an uncertain journey through HCV

Still Undetectable!

2008-10-11T16:59:00.002-04:00

I never had a 12-month post treatment PCR, but I finally had one about a week ago, which makes that 18 months post-treatment - and I'm still UD!
It looks like the bug is dead.

I Don't Wonder or Wander Anymore

2008-02-08T18:02:00.001-05:00

This is the first post I put on here in months, so you know this is important.

If you're looking for advice, support, knowledge, friends, etc. regarding Hep C, click on the link marked 'The Nomads' to the right of this post. This is where I park my camel, most nights, since this site opened in early December, 2007, and I became Member #13. Before that, I did wander from place to place and I wondered about some of the people at those sites.

If you've been a member of the "Hep C" online scene for a while, you'll find some old friends and everyone is very friendly. If you're newly diagnosed with Hep C and considering your options, you'll find plenty of people who have been down the same road you're on, who will point you in the right direction.

Most of the Nomads have belonged to other Hep C online forums and have left those other sites, for one reason or another. But, a fair number of Nomads still belong to other forums and this isn't questioned.

This is an unmoderated forum. There hasn't been a need for moderators so far. If you join and post something, your post isn't 'submitted for approval,' it gets posted online immediately. When one member had a little Riba rage incident, everyone else just ignored it, and that is the best way to handle these things.

I hope to see you there - I've got a lovely tent on the edge of the oasis.

The End

2007-10-26T10:33:00.000-04:00

So, that's about it here. This blog was set up to document my uncertain journey...blah, blah, blah. On the way it provided an outlet for my outrage against the medical industrial complex here in the USA, the rigors of HCV treatment, and especially against one particular G.I. practice and one Physician's Ass. I had thought I'd name the practice, & name the Ass, once I was done, but I am considering reporting it and him to the authorities in my state, and don't want to deal with accusations of libel, if I do that. If anyone in the mid-Atlantic region is considering HCV treatment and wants to know the name of a good doctor - to avoid - send me an email, and I'll tell you who not to use. Just last night at the beautician's, I warned a stylist, who is having a colonoscopy Monday with my doctor, about them.

The Ass, being an Ass, gave me orders to have another ultra-sound, but I'm not doing that, especially after talking to an ultra-sound technician last week, who told me that the procedure is worthless.

I won't be having another PCR for a year, not until my next check-up with my primary care physician. The Ass told me that he recently saw another Type 2 HCV patient, whose virus came back, two years after the patient was declared SVR, so I know anything can happen.

If you're a recently diagnosed HCV patient, or just anyone who wants information on my experiences with HCV and its treatment that you haven't found here - and I don't know what else I could say, I didn't exactly hold back anything here - send an email to the address at the right.

I'll be continuing the other blog and renaming it, but haven't thought of a good name yet. I'm either no longer depressed about the events in my life - or the bubble hasn't burst yet and I may still slip into depression. I think I'm adjusting to my new and lonelier life (possible deprssing title I've already ruled out). Since making the decision that my current/ex husband HAD to get some kind of therapy if he wanted to get back together with me, and him refusing to do that and now actively pursing Plan RV, I've felt at peace.

I may even no longer be uncertain...

Nah, probably not.

The Best News!!!

2007-10-20T23:01:00.000-04:00

I had to tell two of my blog buddies in person today, couldn't post anything till I did. I'm Virus free as of Sept. 29th!!!

No physician's ass's were killed in the aforementioned viral massacre, although I'm sure that if one particular physician's ass had been killed, it would have been ruled a justifiable homicide.

One new blog image/avatar was lost in the excitement of writing this, leaving me with the old one; obviously I killed as many of my own brain cells during the HCV treatment as I did HCV viral copies. But, I'll get it worked out. A new image is on the way.

Thanks to Tea and Laurie for spending a wonderful day in New York City with me - and b.t.w. - Tea has the most amazing eyelashes I've ever seen, makes me want to do treatment again...NOT!!

Well, it's late, the basic points are: I killed the virus, I lost my new blog image and oh yeah, did I mention that the virus is gone? Well, the virus is gone!!

A Year Ago

2007-10-12T09:50:00.000-04:00

A year ago today, I started my HCV treatment. At this time, precisely, a year ago I was probably at work, dreading an afternoon appointment with my physician's ass, who was going to give me my first injection. I seem to remember he kept me waiting so long, that I withdrew the proposal I had made him a few weeks before - to give me all of my injections, and I would slip him $25 each, in cash, for his services. I think he kept me waiting for almost an hour and I valued my time at more than that.

So, I learned how to do a sub-cutaneous injection, which proved helpful when my daughter, (who has something called "Liden-5" factor (I think), which causes blood clots in women with it who take birth control pills, and could cause clots in the umbillacal cords of their babies, when they get pregnant, which can cause miscarriages) became pregnant and required daily injections of blood thinners.

And, I've learned a few things about HCV treatment in the past year, which are my conclusions only, based on my observations of reading about hundreds of people's experiences:

1. People with high viral loads should start taking ribariran 4 weeks before their first interferon injection, so the riba can build up in their systems and be at full strength when the interferon begins.

2. Everyone should have a 4-week PCR, that's a full 28 days after their first interferon injection, but before they give themselves injection #5. If they're undetectable at the 4-week point, they're Super Responders, if not they should have a PCR at the end of 8 weeks, to see if they're early responders, if not the usual one at 12 weeks. Knowing that you're undetectable at 4 weeks would give you a sense of well being, knowing that you killed the virus in just 4 weeks, and would make any proposed dose reductions later on in treatment easier to accept.

3. Rescue drugs, such as Procrit and Neupogen should be given to everyone on HCV treatment who needs them, to increase their chances of completing treatment. It is incredibly cheap and short-sighted of insurance companies to deny these drugs to their members, they're saving some money in the short run, but if the patient is taken off treatment, due to anemia or neutropenia, and then goes on to require a liver transplant, this operation will cost the insurance company hundreds of thousands of dollars more than would the rescue drugs.

4. Anyone doing HCV treatment for more than 24 weeks should not fight anti-depressants, if it becomes obvious that they are required. Taking these is not a weakness, it's another type of rescue drugs. You can (or I could) tough it out for 24 weeks, at great risk of having road rage incidents, arguments with everyone, and delusions of psychic powers (which I knew were delusions while I was having them, but nonetheless, on some level, I believed I could read peoples' minds), but 'toughing it out' does not make you a better person, it makes treatment more miserable for you and those around you.

5. If your HCV doctor or physician's assistant does not ask questions about your mental health at each appointment, find another doctor who does do this and switch doctors.

Anyway, these are my thoughts, no one elses. I still have a week before I see my physician's ass for what I hope is the last time on Oct. 19th, and rip him a new one over #5 above, but I have found out, from my primary care physician, that my other blood work is good, my Hgb is back in the 13 range, Hct is similarly good - I didn't ask him about the AST and ALT tests, gotta leave some surprises for next week - even my cholesterol is good (170) and my TSH is .36, which is where I like it.

I'm the biggest baby there ever was regarding needle-phobia, hatred of side effects, and being sick. If I could complete this treatment for 24 weeks (albeit with rescue drugs), anyone can.

Anyone doing this for 48 weeks has my total admiration and anyone doing it for longer than that, or multiple times...well, words fail me. These people are true role models for HCV treatment and Super Heroes.

Hi Ho...

2007-09-28T11:59:00.000-04:00

...Hi ho,

It's off to have my blood drawn for the 6-month post treatment PCR I go.

If my Physician's Ass got the code wrong on the lab slip and my family doctor refuses to change it and I end up having the wrong test - that shows I have the the HCV antibody - and this is the only news my Physician's Ass can give me on October 19th,

Then it's out of a fourth floor window he goes.

(My apologies to the 7 Dwarfs)

It’s probably back

2007-09-20T14:46:00.000-04:00

The virus, that is, and I don’t care. I’m too old to try to get rid of it a second time, I’ll just live with it as best I can.

I’ve been very good about not eating the foods that used to go straight through me before I started treatment, except for some Sushi, now and then; nonetheless, random foods (I kept a food diary for a week to see if I could detect a pattern – no pattern was seen) are back to going right through me again, and I’m back to buying Imodium in bulk and taking it more often than I should be.

If it's back, I’m sorry I’m not going to be able to drink the occasional beer or glass of wine again, the four remaining bottles of beer from the six-pack I bought in July will need to stop calling my name and call someone else’s name instead.

I probably never should have tried to get rid of the virus, at my age and with my minimal liver damage, it probably wasn’t worth doing. My G.I. doctor and his Ass should have realized that: 1) I already had one auto-immune disease; 2) interferon can cause people to develop auto-immune diseases, especially since if they already have one, they are automatically predisposed to get another one, and discussed this with me. They did not. If they had, I probably wouldn’t have done the HCV treatment. I probably should have read the Pegasys brochure more carefully and not relied on a doctor to know what was best for me. Bygones.

The two auto-immune diseases that scare me the most are Rheumatoid Arthritis and Pernicious Anemia.

My grandmother had R.A., my daughter has it, and there is a strong family connection. When my grandmother had it, there was little she could take for it, and she became wheelchair bound and lived her final years in constant pain. When my daughter was diagnosed with it, at the age of 22, there were lots of new medicines for it, and two of them stopped the disease’s progression in its tracks, at least for now.

Since I’m not expecting to be virus free next Friday, I’m just hoping to NOT test positive for the Rheumatoid Arthritis factor, despite stiff achy joints, a constant since about day five of treatment, especially in my hands, that lack the ability to turn a door knob or open a jar of spaghetti sauce. Or if I do have R.A., I hope I can control it with aspirin or ibuprofen, as I obviously can’t take any of the modern ‘may cause liver damage’ drugs that my daughter took for it.

I’m just hoping to NOT test positive for Pernicious Anemia next week, despite zero energy and stamina, almost constant since about day five of HCV treatment. The treatment for that is more B-12, possibly in the form of injections, probably self-administered. I’m really not up for that. My mother got her B-12 shots from the doctor; doctors probably don’t do that now.

So, if it’s back, it’s back, there’s nothing I’m going to do about it. I may even drink those four bottles of beer.

Needless Hair Obsessions

2007-09-14T14:30:00.000-04:00

Black and gray roots, about ¼ inches long
Are finally starting to show through the
Hair I had lightened and highlighted more than six weeks ago.
I thought hair was supposed to grown ½ inch a month?

I have appointments for additional lightening and highlighting
Scheduled for September and October. (My stylist is very popular; you need to make appointments with her months in advance.)
Do I want to schedule a hair cut with those appointments (do you want fries with that?) the receptionist asked when I made the additional coloring appointments.
No, my hair grows so slowly I don’t think I’ll need to cut it more than twice a year.

(This is just the old hair I was left with that I’m coloring and highlighting.
I’ve seen no evidence of new hair growing back.
No little wisps as others have described, long before the 6-month mark that I’m approaching.
Whatever, it is what it is and I’m grateful I didn’t lose it all!)

My co-worker’s wife just had a double mastectomy at the age of 35, and
Reconstructive surgery, the day of that operation.
Chemotherapy – one session so far.
On the 17th day after this one session, her hair started coming out in clumps.
She had it shaved yesterday and is wearing a wig now.
My co-worker shaved his head in support.
Five and a half more months of chemotherapy await her.

My life could be a lot worse than it is.

But: Who will shave their head for me, with me, if I get cancer and need to have chemo? Who will hold my bald head over the toilet, if I'm puking my guts up? Who will even drive me to or home from a doctor's appointment, or a treatment at an 'infusion center?' For 24 long weeks, I wished there was somewhere else I could go for my weekly injections, someone who could do them for me.

But, I don't think I would have liked going to an 'infusion center.'

My future ex-husband’s lesbian lover

2007-09-10T09:49:00.000-04:00

called the house yesterday.

Well, let me clarify that – I don’t know for a fact that she’s a lesbian or his lover.

Nonetheless, she called, I answered, she was surprised to hear a woman’s voice, she stammered a bit, couldn’t get a word out, then said, “um, uh, is Kevin there?” One of the greatest inventions of the late 20th Century was Caller ID. I was able to see who was calling before I picked up the phone. Her first initial, K, as in Kay plus her last name showed up. “No, there’s no Kevin here (the future ex’s name is not Kevin), you must have the wrong number.” I hung up the phone and left the house in a hurry to go grocery shopping, knowing she’d call back again in five minutes or less.

I was out for an hour, when I came back the future ex was still on the phone and not available to carry grocery bags into the house. After I got most of the groceries put away, he came out of his office and proceeded to delete the Caller ID listings, on all four phone handsets. Talk about acting guilty!

“What did Kay want?” I asked later, when the future ex and I were trying to watch a football game that held no interest to either of us (our home team wasn’t playing). “Oh, you know Kay’s last name?” he replied. (How would I not know her last name? She came to our daughter’s wedding, I addressed the invitations. At the wedding, he made me hug her, after she supposedly told him that she thought I hated her. “I don’t hate you,” I told her at the time. It was my daughter’s wedding day, I didn’t want to go into the reasons I disliked, not hated, her that day.)

“She wasn’t really calling me, she was trying to call this handyman she hired named Kevin, she just must have called me accidentally. She’s fixing up her house and trying to sell it. She wants to do something with her life, other than stay in the house until she dies. She has half a million dollars saved, last year she could have gotten $425,000 for the house, now with the real estate market in the crapper, she’ll be lucky if she gets $385,000 for it, if it’s all fixed up.” And more details about Kay’s house (no central air conditioning, on a busy street, ancient plumbing) than I needed to know. Talk about acting guilty! In 33 years I’ve learned a few things about his behavior – when he feels guilty about something, he gets chatty and gives away more information than I need to know.

“What’s she going to do if she sells the house?” I asked. “Is she going visit you in S.C.?” I bluffed (S.C. is the place he’s going to be living).

“Well, maybe she’ll come to S.C., she really doesn’t know what she’ll be doing yet, if she sells the house,” he answered calmly.

“Huh,” I thought, “where’s she going to stay in S.C.? The future ex’s friend owns a house that has four apartments in it, but three are rented, so there’s only the one two-bedroom apartment where his friend stays, and the future ex is going to have one of those bedrooms. I can’t imagine a 62-year old woman wanting to sleep on the sofa, if there’s a sofa, in the apartment where the future ex will be staying.”

A fat, sloppy, crude 62-year old woman, who does not dye her hair or wear make-up may be visiting my future ex in S.C. and I don’t even want to think about where she may be sleeping there. (Edited 9/11/2007 - OK, I get it now - what the lesbian lover has that I don't have - half a mil. in the bank and the prospect of another 400 Gs when she sells her house. He did say previously that he hoped to find himself an older woman with money!)

Later, after I couldn’t get the sound on the TV to work, and went and curled up in a fetal position in bed over this failure, after he pushed one button resetting the cable box and it worked again, he came in and asked me if there was anything he could do to help.

“What you’re doing (leaving) is the reason I’m like this,” I answered. “Our marriage is not good, that’s one reason I’m leaving,” he replied.

“Our marriage is no good because we both neglected it,” I told him. “Kay became your confident and friend, I was just the person you lived with.” I didn’t accuse her of being his lesbian lover this time, he has denied that on previous occasions.

It was too late in the day for a big fight.

Well, this belongs on the other blog, but I can't remember the password for it right now.

24 Weeks or 6 Months?

2007-09-07T15:08:00.000-04:00

I have the lab slip for my 6-month post treatment lab tests, I've had it since I got the results of the 3-month post treatment test. Should I have the test at the end of 24 weeks - that will be Thursday, September 13th, or at the end of 6 months, which will be Friday September 28th, which will coincide with my regular yearly check-up with my primary care physician (PCP)?

Reasons to wait until September 28th -

1. I can ask my PCP to put the tests my physician's ass ordered on a regular lab slip, not a tiny prescription form, and make sure that the correct PCR test gets ordered.

2. One blood test on the 28th vs. one on the 13th, then another one on the 28th.

3. Results of the test can be sent to both the PCP and the Ass, and the PCR will surely be done by the time I see the Ass on Oct. 19th.

Reasons to have the PCR on September 13th -

1. Possibly finding out the results a littler sooner than mid-October, that's if the Ass wrote the correct code for the test on the RX form, or if I can convince the receptionist at the lab that 'Yes, the Ass wrote down a XXXXX5, and this means the HCV antibody test in your book, but he really should have written down XXXXX6 which means quantatitve PCR, yes I know, it's a transposition problem at the Ass's office -someone typed 5 instead of 6 on this master test list he uses, and I've had to deal with this error 3 times in the past year, and he refuses to admit he's wrong or that someone in his office could have made a mistake. Help me out, please ma'am, I have a copy of the lab slip another physician's assistant from the same practice gave me in April, which shows the correct code, you can see that it's just a transposition error.....'

Well, I think by writing this all down, I just answered my own question - I'll wait until the 28th. It's only 3 more weeks. What's 3 more weeks after almost a year?

C.R.S.

2007-09-04T08:56:00.000-04:00

I came in to work today, after a 3-day weekend and can't remember shit about what I was doing here last week, and had to cancel a 9:AM meeting that I wasn't prepared to have. There's stuff sitting on my desk that needs to be done - it's a good thing I left a note for myself on one thing, about calling someone to change something, or I wouldn't remember whose court that ball was in, I guess it's in mine and I have to make a phone call to toss it to someone else's court.

There was a major report that was due September 1st, well that's now late. Part of the report was the subject of the meeting I was going to have today, well that will have to wait. The same report, due last September 1st, wasn't written until January or February when I was out sick. I pretty much blew it off last fall while waiting to start treatment - I was too terrified to concentrate then and I asked for and receieved a two-month extension, but by November, I had started treatment and I was already taking time off due to exhaustion and other side effects. When I would come in to work, I would look at the report draft, shuffle papers around, and hold my head in my hands and think, 'I can't do this, I can't think straight.' And then I put it down and ignored it. And, when I talked to my boss, the few times I talked to him when I was out sick, I implied that I wouldn't be back until he or someone else wrote it for me, it was too stressful for me to think of coming back and writing it.

I pretty much feel the same way now, but can't take the next 6 months off to avoid it. I can't ask for a two-month extension again, that will be two years in a row, with no excuse except the obvious anxiety regarding the upcoming separation from the future ex - and I already had to tell my boss about that last week, so he could cut me some slack. And, I told one other man, who probably knew my marraige was on life support before I knew it was the Titanic headed for its rendezvous with iceberg destiny.

Anyway, I took my wedding ring off on Saturday, there's no reason to wear it anymore.

Getting back to my job - who said that showing up is 90% of it? I show up at work, I push papers around my desk, some people think I'm actually working.

It's easier to ask for forgiveness than for permission, when someone notices the report is late, I'll apologize, plead "future ex-husband induced brain fog" and ask to be forgiven.

It's Not a Tumor

2007-08-31T08:48:00.000-04:00

Or, it's not a 'tuma,' as the Terminator/Governorator said in "Kindergarten Cop."

The MRI results are in and it's not a brain tumor. It's not M.S. They couldn't find anything wrong with my brain, my sinuses, my ear tubes, nothing, zip, nada. I suppose this is good news, I should be glad that nothing major like a tumor or M.S. was detected. But, I wanted them to find some small thing wrong with my ear that could be easilly fixed with medication (preferably) or minor surgery. Now I'm a medical mystery, but not even an interesting mystery.

The Good ENT's offer to put a tube in my ear, to relieve the pressure in it, so I won't have this constant, annoying, stuffiness then popping in the one ear, is still on the table and I have to decide whether to do this by mid-November, which is when my referal to this doctor expires. So, I guess I have some time to think about this.

I AM glad that it's not a tuma.

My MRI

2007-08-25T07:15:00.000-04:00

I saw my new ENT on Tuesday and he ordered an MRI, which I had yesterday. The doctor thinks my hearing loss is 'Nerve Hearing Loss,' - a hearing aide wouldn't help it. From being completely deaf in one ear at the end of January, I have gotten back some hearing, it's now just the high pitched sounds that I can't hear, then there's the ongoing tinnitus problem, for which there is not cure. So I question the coincidence of "nerve hearing loss" occurring just when I had pneumonia and was on interferon, but whatever.

I liked this doctor better immediately than the first one I had seen. His exam rooms were roughly 3 times the size as those of ENT the First, whose staff had patients strategically placed in all of the exam rooms, so when the doctor came in, there was a patient ready in a chair, and ENT the First didn't have to wait.

The new ENT, ENT The Good, had taken the time to read all of the records ENT the First had sent, and was shocked that the person who had conducted my prior 3 hearing tests was not a licensed audiologist! What did I know - she had seemed official, anyway, my hearing test from Tuesday pretty much duplicated the ones from ENT the First's audiologist trainee.

ENT The Good and I discussed putting a tube in my left ear to alleviate the constant popping. ENT the First had said he couldn't justify it medically, ENT The Good said getting my insurance to pay for it wouldn't be a problem, but he wanted me to have an MRI first, something ENT the First never suggested. So, ETG ordered an MRI with contrast.

When I arrived at the radiology office yesterday, I found out that 'contrast' meant that they'd inject some kind of dye in a vein, and BTW, the release I would have had to sign mentioned a 10% chance of dizziness (I'm already dizzy) and nausea when you have a contrast MRI, plus, suggested that if people have or had liver problems , kidney problems (I have a history of kidney stones) or anemia, the contrast dye could make these problems worse. Ever eager to avoid another hole being punched in a vein, and other problems, I declined the contrast.

I had requested one of those 'accessible MRI's,' where the sides of the tube are open. I held very still for the entire procedure, which was a series of tests, one minute - four minutes- five minutes, back to four minutes - I had foam earplugs in my ears, and I've been to a few rock concerts in the day, but this was the loudest noise I've ever heard.

I got through it by closing my eyes, counting very slowly (I thought) to 300 when the test was five minutes long, or 240 when it was four minutes long, and also by mentally singing John Mayer songs - couldn't actually hum, that would not have been good.

"and if you want love take it"...something something - must learn the lyrics for the entire song - "your body is a wonderland."

I guess I'll get the results next week. I hope the test reveals something that can be fixed.

Can't Hardly Wait

2007-08-22T15:12:00.000-04:00

...until this hepatitis C thing is over. I'm looking forward to having my 6-month post-treatment PCR on September 28, 2007, then it will be at least two weeks until the results are known, so I'll make an appointment to see my physician's ass on October 19th or so, and I'm also really looking forward to shoving my last sharps bin at him and telling him what an insensitive jerk he is!

I hope the PCR news is good, so he can't just dismiss me as a hysterical patient, upset by bad news.

I also hope I can hold it together and not punch him.

I hope I can write an eloquent letter to the Board of Physicians' Quality something - need to look this up again - that licenses doctors and physician's assistants, and tell them that this man ignored the entire mental side effects aspect of HCV treatment when he was treating me, has the empathy of Idi Amin, (when I'd complain about this physical side effect or that physical side effect, he'd just say, "it's a crappy treatment") and at the very least, needs to attend a HCV sensitivity class, if not an entire semester's course on how to treat and interact with HCV patients.

If it's back, I'm going to pretend it's not back, except I won't drink alcohol. I'll be dropping out of blogging and forum posting (no need to be around people who have achieved SVR, if I'll never get there, unless and until HCV can be treated by a magic pill, taken only once). I don't want to act bitter towards people who have good results, and it's hard to not be bitter if you relapse. Well, maybe not for everyone, but it would be hard for me.

If it's gone, I hope to join an actual "live and in person" HCV support group that meets once a month at a local hospital, and try to help others who are going through what I went through.

I also have a dark brown wig I'd like to donate to someone, somewhere. I have previously described it as looking like a wet dog, but it really isn't that bad.

Things To Do

2007-08-21T20:00:00.000-04:00

Sorry, this post was moved to My Other More Depressing Blog, where it should have been posted originally. Sometimes I start writing things and don't know where they're going - this post was going there.

Tea, thanks for the suggstion, but I'm no way near ready to date again.

Miscellaneous tidbits that don't fit anywhere else

2007-08-19T19:29:00.000-04:00

October 12, 2006 - I inject my first dose of interferon into my tummy, and in a Mexican honeymoon resort, my daughter who was married 3 days before, gets her period.

October 26, 2006 - Two weeks later, I finish week two of treatment, and one of my daughter's eggs meets one of her husband's sperm; they unite then split into two identical twin embryos a few days later. (The doctors consider the pregnancy to be at week two, the babies' gestational age is day 1.)

November 22, 2006 Thanksgiving Day - My daughter, who has taken two home pregnancy tests, announces the pregnancy to the family. The pregnancy and my HCV treatment are finished their 6th week, the babies' gestational age is 4 weeks.

The week of November 26, 2006 - Anemic and crabby, I nonetheless accompany my daughter to an appointment with her gynocologist, who confirms the pregnancy. The doctor sends her for an ultrasound.

The week of December 3, 2006 - week 8 or start of 9 for me? I ain't going no where, I don't have no energy for nothing, my daugher goes for the sonogram herself and finds out she's having twins!

Between then and January 9, 2007 - week 14 for me - the latest sonogram shows the twins are identical, and I have gone back to work, thanks to improving anemia, thanks to Procrit.

Between then and January 29, 2007 - my daughter finds out she needs to have daily blood thinner injections and refused to learn how to do this herself. Since her husband learned how to do a sub-cutaneous injection as part of his Army training, and I just recently learned how to do this, he and I handle it for the rest of the pregnancy. I am diagnosed with pneumonia, so he handles the injections until I get better and he goes for monthly reserve training. (Sticking a needle into another person is actually worse than sticking it into yourself.)

Some time later - another ultra-sound reveals that the babies are girls.

March 29, 2007 - I finish my HCV treatment of 24 weeks, my daughter's pregnancy finishes its 24th week. I stop keeping my "Keping Pace/Pegasys" journal on how I'm feeling, but keep using it to count pregnancy weeks, and then to record the estimated baby weights from the ultrasounds.

Some time in April or May - my daughter and I have a fight over how far along her pregnancy is. Without whipping out my journal to show her, she thinks she's a week behind where I think she is. Every Sunday she reads a chapter of "Pregnancy Week by Week," and she's reading the wrong week! :{

May 17, 2007 - Week 32, I'm 8 weeks post-treatment, and the babies are about 3 2/3 pounds each.

May 31, 2007 - Week 34, I'm 10 weeks post-treatment, and the babies are said to be 4 1/2 pounds each

June 7, 2007 - Week 35, and the girls are supposed to be 5 pounds each.

June 29, 2007 - I go for my 3 month post treatment PCR. Week 38 of the pregnancy and the babies are supposed to be 5 lbs. 13 oz and 6 lbs. 10 oz.

July 5, 2007 - I'm 14 weeks post treatment. The end of week 38 of the pregnancy, and the babies are born weighing less than the ultrasound said they would, but healthy.

So, my daughter stopped counting pregnancy weeks and started counting 'weeks old.'

It's now August 19, 2007 and they're 6 weeks old and it's been 44+ weeks since I started HCV treatment, 20+ weeks since I finished, and I really want to go have my last PCR in another 4 weeks, but I know I should wait until September 29th, which will be a full 6 months after treatment.

So, I have to keep busy, I'm also counting weeks till my husband leaves - 5 1/2 at this point. And to keep busy, I'm redecorating: painting the bedroom, moving the dining room into the living room, and the living room into the bedroom. Also, moving the children's playroom down to the basement and the guest bed into the old playroom on the main level of the house, so I have a guest room for my daughter and the babies to stay in for a few weeks, when her husband does his two week Reserves stint, and that bed isn't going downstairs, I'll have a guest room for the first time in this house in a room that I'm not ashamed to have guests stay in.

And, I have to keep busy, I'm having my son-in-law tear up my deck, which is an eyesore, and I need to put down sod or plant grass where the deck is/was.

Have to keep busy, can't stop, don't want to have time to think about the impending aloneness and loneliness to follow.

I must find something else to count/keep track of when the future ex is gone.

The road to hell,

2007-08-16T08:15:00.000-04:00

paved with good intentions - yes I have heard that one. I said I wouldn't write any more. I didn't keep my word - but that's the word: word!

Words come into my head and the only way I can get them out of my head is by writing them down. The words that come into my head recently don't belong here, the belong in another blog.

So, if you're reading this primarilly for information on how the HCV virus and treatment for same affects (or effects - which is it? I've had problems with the correct way to use those two words all my life. A long, long time ago, in a distant galaxy, I wrote a paper in college on when to use each of them. I still have the "Dictionary of problem words and expressions" that I used as a reference for that paper, sitting on my bookshelf, not 8 feet away from me, and I'm too lazy to get up and look them up again.).

So, if you're reading this to find out how the HCV virus and its treatment INFLUENCES a person (that's what I usually do - find another word for affects/effects), read this blog.

If you're looking for information on how a bad marital break-up influences a person, read My Other, More Depressing Blog. There is a link to it on the top right corner of this blog. The other, more depressing blog is not for the faint-hearted.

I Need Some Space

2007-08-13T14:03:00.000-04:00

...between me and the demands of HCV, blogging, marital updates, commenting on other people's blogs, emails, support groups, etc.

From everything except contact with actual blood relatives.

I'll be back when I can deal with all of the former again.

Hi, Welcome, Thanks for Stopping By

2007-08-08T12:02:00.000-04:00

Approximately 2/3 of the people who find this blog for the first time search on the words "L.B.R." This blog is Yahoo search result #343 (out of about 1,200) if you search under "L.B.R."

I'm not even going to spell out what L.B.R. stands for, as if I do that, it will probably move this blog up higher (to a lower number) under L.B.R., and if you are reading the first 342 'hits' under L.B.R. before you read this, you are reading way too much about L.B.R's, and you probably have liver problems, possibly Hepatitis C, and you need to stop surfing the internet and get up off of your butt and do something about it, before your liver goes from Stage 0 to 3 in the U.S., and downhill on the scales they use to measure liver damage in other countries.

Check out the top group of links on the right for more information on Hepatitis C and L.B.R. This blog describes my personal experiences with Hepatitis C, not anyone elses and I am not even the worlds 343rd most knowledgeable person about L.B.Rs. If you want to ask a personal question about this, send me an email.

1/2 hour later - OMG, this is even worse than I thought! # 343 on Yahoo Search out of about 1,200. #5 (five) on Google Search (which most people use) out of about 14,000. I think I'm going to have to delete that post or something. Why is this happening? The L.B. was over a year ago?

Bull Shit-O-Meter on Low

2007-08-05T20:48:00.000-04:00

The future ex has a very nice uncle, who is 80, and a very nice aunt who is 67, and the future ex and I went to their house tonight for another of the many parties this couple has for their friends and relatives, and I couldn't stay there with all of the married couples they call their friends. I couldn't pretend to be one of them.

Even though we've been to so many of their parties that I'm getting to recognize and even remember the names of some of their friends, they're not my friends. I ran into one of their friends, who lives in my neighborhood, a lot last winter at the supermarket, during the day, when I was out of work sick (but food shopping had to go on), and I guess I didn't know enough about her to question why she was there in the daytime, and she didn't know enough about me to wonder why I wasn't working.

Anyway, most of the future ex's aunt and uncles' friends are OLD! They shop in the daytime because they're retired.

It isn't often that I'm the youngest person at a gathering, at my age, but it really isn't enjoyable. I look at women with thinning (worse than the hair loss I experienced on HCV treatment) orange-dyed hair yelling at their hard of hearing husbands, couples with eight grandchildren living overseas that they never see, people recovering from triple bypasses and hernias, etc., etc., and usually I come away from these parties feeling fortunate at how good my life is in comparison to them.

But none of them has a future ex getting ready to split the scene. Maybe some of them have lousy marriages, but none of them are getting ready to pull the plug on these marriages. Linda (is that her name?) yelling at her husband Matt (is that his name?) has hair the color of Lucille Ball, and maybe she's Irish and maybe it was that color once, many years ago, but don't tell me that's a natural color for a 70 year old. But Linda seems to love Matt, and she's just yelling at him to get him to take his pills.

When I walked into the party, I felt uneasy. The uncle greeted me and told me I look tired. A lot of people tell me I look tired these days. I made my way into the house through a roomful of people sitting around a table with food, but the predominant smell in the room was raw onions, sitting there ready to top the hamburgers that were going to be cooked, and I hate onions and I especially hate raw onions, so I had to get out of that room.

I found the aunt in the kitchen, and a pitcher of iced tea, poured myself a glass, made a mess trying to get ice out of a 35 year old refrigerator, sat down at the kitchen table to drink it. The aunt urged me to mingle, I told her I didn't have the energy or inclination to mingle (she's one of the few flesh and blood people I see, who knows of the impending divorce). She introduces me to whoever comes into the kitchen. I don't even make an effort to pretend to remember names. The woman from my neighborhood arrives, carrying potato salad that does not go with my 10-day old diet (so far I've lost 1 pound). I flee the kitchen with my glass.

The future ex comes in and says hello (we arrived at the party separately, as he came from home, (MY home now, as of Thursday, or was it Wednesday?, as the loan assumption/settlement finally got settled at the last possible minute of my loan committment. But, of course our Marital Separation Agreement, which he wrote, says he can stay until the end of September) and I drove from another state, and he invades my personal space by standing too close, and his gut is almost touching me (2 weeks on the South Beach diet for him, and he SAYS he lost 8 pounds, but he'll never lose the gut) and he wants a kiss. I don't think so.

I move to the living room, empty of people, and sit down on a 35-year old sofa near the front window and wonder for the 1,000th time, how this couple can live with lime green walls, paisley curtains and other relics of the last time it was decorated during the Nixon administration.

The aunt comes in and tells me she knows what I'm going through, as she is a child of divorce. I tell her she has no clue, having a father walk out on a mother is not comparable, and that I have to leave. I could stay and cause a scene, or I can leave. Leaving is a better idea: standing up on a table, banging a knife on a glass and telling the ex's aunt and uncle's friends, even though I'm stone cold sober, what an asshole my husband is...well that's just overly dramatic and there's no point to it. I could get a reputation for being crazy if I do crazy things. I've never seen anyone do anything like that outside of a Hollywood movie. The aunt tells me to take care of my health during this stressful time. She has no idea what I just went through.

I can't handle any more of these family functions. I can't be around other people's friends, and especially all of these old people any more.

The bull shit detector is on high, but the capacity to process it and regurgitate it is not working at all.

I Need To Find A New Dentist

2007-08-03T19:45:00.000-04:00

This one WAS new a few months ago. He's a distant cousin of the future ex. When I first went to see him, I was near the end of my HCV treatment, and undetectable, I didn't have to tell him squat about HCV, but for some reason, I told him the story, listed all my HCV medicines on the registration form, and even dragged out my very first "8-weeks on treatment 'Undetectable' lab report," which I was carrying around with me for months. He made a copy and put it in my chart.

He took digital x-rays of my teeth, found 2 cavities, told me to come back to see the hygienist for a cleaning.

I went back for the cleaning, but kept putting off the fillings until today.

Today, he kept me waiting 15 minutes, then brought me back to the x-ray room to inject me with Novicane. He had just seen my husband a few weeks ago, and my husband had told him all about his plans to play Pirates of the Caribbean, so the dentist asked me if he had left yet for points south. I told him he hadn't, and in my best country western voice asked 'how could I miss him, if he won't go?' The dentist asked if I was jealous of my husband leaving. "No," I said, "I don't want to go sailing, if I wanted to go sailing, I'd go with him." Then the dentist said he'd be back, he was finishing up with another patient.

Another 10 minutes went by. I got bored, finished reading the magazine I had brought with me from the waiting room, looked around for other reading material, and there was nothing except for my chart, so I looked through it.

It had my x-rays, the form I had filled out with my medical history, and my insurance info., then I found a copy of an insurance form from another patient IN MY CHART. But, I did not see a copy of my first 'Undetectable report' in my chart. I wondered if the doctor had forgotten I had HCV, if the report wasn't in the chart.

I tore the other person's insurance form out of the chart and when the assistant came in to get me, to move me to another room, I told her that the form, which I had left on a counter, didn't belong in my chart.

I went back to the treatment room and had two relatively uneventful fillings.

Then I got up to leave, the doctor said goodbye, then said to his assistant, "You know what to do with the room, don't you?"

I knew where this was going - they were going to have to burn the room, or at least sand blast it or run a blow torch through it to destroy the evil HCV virus the dentist thought I still had!

"I'm cured," I cried out, (even though there's only a 95% chance I'm cured), "I don't have HCV anymore. You're supposed to treat everyone as if they had an infectious disease, not just the people who tell you they have one."

"Yes, well, we do," the dentist said, "but the room has to be disinfected and sit empty for an hour."

"Why can't I have my fillings done in a room that's been disinfected and has sat empty for an hour? I thought there weren't any safe people anymore, just safe procedures and practices," I said.

"This is how we do things here," he said and took off his disposable gloves and left them on the tray and walked out.

I looked down and realized I was holding the disposable bib I had been wearing, and before this final conversation with the dentist, I was going to throw it in the trash myself, rather than let someone touch it, because it had a little blood on it. I looked around for a trash can but didn't see one. "Fuck it," I thought. The dental assistant was dressed in a Hazmat suit, as if she was going for a walk in the Paris sewers, I'm still undetectable, a little of my blood won't kill her. I wadded it up and left it on the tray and went back to the receptionist to pay.

The insurance form from the other patient was sitting on the receptionist's desk. I suddenly realized that my Undetectable report was probably in someone else's chart. One day, the person, whose chart it's in, may look through his or her chart and see it.

I paid the bill, let the receptionist schedule me for another check-up in late October and left.

But, I'm not going back there, I'm going to find a new dentist and not tell him I had HCV.

Last Tango in Paris…

2007-07-31T11:39:00.000-04:00

…not happening, not even in Quebec.

I don’t know how or why these things happen, they’re kind of like the failed ‘Food for Oil’ program that didn’t work in Iraq.

Somehow or other my husband and I kinda, sorta had sex a few times recently.

Once was on my birthday. I like to have sex on my birthday, plus it was the first time I felt human and therefore had the urge, in many months. So, that was in May, yada, yada, yada, I ended up with a 30 GB ipod as a birthday present from him.

Then there was one more time in June, which I didn’t enjoy, and once in July, which he didn’t enjoy, so we’re even.

Somehow or other, we got to talking about taking one last trip together. I wanted to go to Paris, but the future ex is too cheap to pay for a trip to Europe. I suggested Quebec City, and nothing came of that suggestion for the longest time. Then I found a good deal on a week in County Clare, Ireland, the day after we watched a half-hour TV show on the west coast of Ireland, but we couldn’t find another couple to split the cost ($600 for the week), then there would have been trans-Atlantic airfare, rental car, dollar vs. Euro issues, etc.

So we went back to talking about Quebec City as a Paris alternative, but the future ex is too cheap to pay for a hotel in the city. I found a place 40 miles north of QC, and we were about to make reservations for a week there in September, then he picked up his phone to call the place and found that there were five messages from his sailboat owning friend, with whom he’s going to live. So, he had to call his friend back first.

So, I went back to the living room and loaded 4 more CDs into itunes, then onto my ipod. Then I cooked my Nutrisystem dinner entrée and ate it. (The diet is part of my ‘getting ready to get back on the dating scene plan,’ which also includes a haircut, color and highlights scheduled for Thursday.) Then I washed the dishes in the kitchen. (OK, it was just a fork and knife to wash.) Then I watched the local news. (OMG, some woman in Ocean City, MD seems to have killed four of her own newborn babies and stuffed them in various places in her house! What a sick world this is.)

And I realized that:

I don’t want to go anywhere with the future ex at this particular point in time.
I have another 3 weeks of vacation to use up this year and I don’t want to spend one of them with someone who doesn’t love me or appreciate me, when there are other people I could spend time with who do love me.

And, when I told him all this, I think he was relieved that he wouldn’t have to spend any more money on a dying relationship, but of course it led to an argument regarding when and what to tell the kids about his leaving. He would prefer to tell them that he’s just going away for the winter; I feel they’re old enough for the truth – we are separating and have a formal Marital Separation Agreement (MSA) for the separation. That’s why I’m spending all this time and money assuming the mortgage on the house and getting a new deed for it, in my name alone. The MSA will lead to a divorce by the end of 2008 if he doesn’t come back.

The way things are right now, I don’t want him to come back.

And, I cried a little, and for the first time, about how lonely I’m going to be, how I’ll have no one to turn to if I get a flat tire or if the car breaks down, no one to shovel snow in the winter, and I’m going to have to get a big bad-Ass German Shepherd in order to feel safe living in this house I’m going to own, etc.

But, he doesn’t want to admit, even to himself, that he’s walking out on our marriage for no good reason. (In my opinion, he’d have left already if our daughter, Fertile Myrtle, hadn’t gotten herself knocked up on her honeymoon, and then had twins earlier this month.) He sees himself as an adventurer, not a cad.

Anyway, he then told me that he’s got a ticket to ride and it’s dated September 27, 2007. He wants me to drive him to the airport.

We’ll see.

3 Month Post Treatment Results

2007-07-27T07:19:00.001-04:00

UNDETECTABLE!!!!

The Urge to Know

2007-07-26T09:12:00.000-04:00

I had a sudden urge to know the results of my 3-month post treatment PCR, and just left a message for my Physician's Ass about this.

Now I'm shaking and having heart palpitations and feel like crying.

Well, I made one phone call - when in the history of my treatment by this bozo has he ever called me back after only one phone call? Never.

So, all I have to do is to continue in my ignorant/blissful state is: not press the issue by making more phone calls, sending faxes, or showing up at his office without an appointment and pounding my fist on the receptionist's desk, and I can continue sticking my head in the sand about this for another 2 months.

Black-Eyed Susans...

2007-07-23T15:00:00.000-04:00

...are the only thing growing in my flower box this year, and they aren't doing very well, thanks to very little rain, me being away for two crucial weeks, and the future ex not watering them while I was away!

Rudbeckia hirta (Asteraceae)

A stiff, upright annual or shortlived perennial native to the eastern United States, but has become endemic throughout North America. The Black-Eyed Susan is probably the most common of all American wildflowers. The characteristic brown, domed center is surrounded by bright yellow ray florets. Thrives in most soils in full sun. A true sunshine worshiper that forgives neglect.

Average planting success with this species: 80%
Height: 2-3 feet
Germination: 7-30 days
Optimum soil temperature for germination: 70F
Sowing depth: 1/16"
Blooming period: June-August
Average seeds per pound: 1,710,000
Seeding rate: 2 lbs. per acre
Suggested use: Roadsides, open fields, floral gardens, mixtures.
Miscellaneous: The state flower of Maryland. When cut, has a vase life of 6 to 10 days. Reseeds.

The ones you see on the blanket on the horse that wins the Preakness (second race of the Triple Crown, held two weeks after the Kentucky Derby) are fakes, as the real Black-Eyed Susans aren't blooming in May. But, since you have to wrap the winning horse in the state flower (or a reasonable facimile thereof), the blanket is made of other flowers - Gerbera (SP?) daisys perhaps? - that have had their centers hand colored black!

What I said on the Ron's Resignation thread on the forum, to a Susan, that got edited, after she told Chrissy to shut up (before I forget) -

"Who are you?

Someone who joined a week ago?

Or an old member with a new name?

What gives you the 'street cred' you seem to think you have here?"

(Or something like that.)

My blog, I can say what I want here!

From the Middle of Nowhere to Nowhereville

2007-07-22T20:18:00.000-04:00

So, I just got back from 2 weeks in the middle of nowhere, to my usual Nowhereville home, with the future ex. How many days do we have left to go before he leaves? Less than 75, I think.

Today he 'helped me' buy a new computer, which meant getting to Best Buy before they opened at 11:00 a.m., & getting in line behind one other couple to buy the deal of the week - a nice Gateway laptop on sale, for $500, then running to the computer department and standing in another line as the Best Buy employees unlocked the computer storage area and handed out laptops. I had a minor shouting match with a man who tried to jump the line, but there were enough computers for everyone.

Then the future ex set it up for me.

I don't set things up in advance, I just turn them on and set things up as I need them.

In return for his services, he asked me if I could have sex with him. "Why not," I thought, there's no one else around for me to have sex with - it's hard to date when you have a future ex-husband at home.

Unfortunately, we got into a major fight about him thinking he needed my email password to register a trial version of Office, and me not wanting to give it to him.

So the computer is only half set-up...which means: it works, I can check my email, I can blog, I can load pictures directly from my camera memory stick, but according to the future ex, I'm only using a fraction of the computer's capabilities, and therefore, I'm ignorant.

So, I don't want him to have sex with an ignorant person, so neither one of us is having sex.

We're not even half not having sex.

The Beer Gods Conspire Against Me

2007-07-21T06:31:00.000-04:00

Eager to sell our one remaining time share unit, as part of our marital financial disengagement, the future ex and I go to a presentation by a company that calls itself "Timeshare Relief." We only used the place once or twice, mostly traded it for weeks in other areas, during the 18 years we've owned it. After the last trip there, when I was so bored I got a tatoo, I vowed never to go back. It is becoming increasingly difficult to trade this week for places I want to go. Neither of us wants it.

There are about 8 other couples in attendance. Getting rid of a timeshare unit is a big problem. The sales presentation most people hear when they buy their unit is that the timeshare week is a valuable, appreciating asset, which can be passed down to your heirs forever. In reality, it's a burden on the heirs, who are faced with ever increasing maintenance fees and the prospect of having their credit ruined if they don't pay them.

Yada, yada, yada...one hour later - Timeshare Relief wants $2,800 to take this burden off our hands!

We're out of there, and back to the old idea of just getting my name off the deed, by doing a 'quit claim.' Since we're in Pennsylvania, in this historical/tourist town, and the timeshare is in PA also, we find a title attorney who will handle the paperwork for about $50.

Next mission - return Little Miss Sunshine (which has a totally unexpected ending) to Blockbuster, buy limes, buy beer.

We pick our way through town, in ever increasing Friday afternoon traffic, finally getting to Blockbuster and the grocery store next door to it to buy 1 lime. Then back towards town to the Beer Mart, where I find I can't buy a six-pack, everything is sold in cases!

I express my frustration to the sales clerk. She tells me to go to a tavern down the road, where they sell beer in six-packs. She gives directions, we head that way and overshoot the tavern.

By this time, the future ex is getting bugged driving up and down the same old strip, even in his ultimate driving machine, and says he's not turning around. And, why do I wait till he's started the South Beach Diet (no carbs) to want a beer? How come I never drink with him? I don't know, something about a liver eating virus.

We drive back to my daughter's house, on the way he makes a joke about something and I laugh, the first time I've laughed at one of his jokes in ages - well, even a broken clock is right twice a day.

We spend a quality hour giving two screaming two week old infants their first in-water baths, then he leaves.

I do my usual cooking/washing/cleaning for the rest of the afternoon and vow to go out for beer after dinner.

Dinner fades into endless baby feedings, finally I'm watching 20/20, which has an episode on plastic surgery, and I vow to go to Costa Rica soon for a tummy tuck and maybe a boob lift.

Then I go to sleep - no beer.

My daughter goes out at midnight to buy the last Harry Potter book.

I'm taking my lime home with me and stopping at a store in my own state, where I can buy a six-pack of beer...and I'll probably drink it tonight.

I'm going to pretend it's gone...

2007-07-20T10:34:00.000-04:00

...It's hot, it's summer, I really want to drink one beer: I'll make it a Corona with a slice of lime.

I just got this craving this past week, along with my daughter getting the same craving. She hasn't had a beer since October, I haven't had one in I don't know how long. She's not nursing, nor is she pregnant anymore. I couldn't possibly be pregnant - except for one time in all of time, a woman has to have sex in order to get pregnant!

I'm drinking this tonight. I'm such a cheap drunk, I probably will get drunk on one beer.

Here's to summer!

A Shadow

2007-06-30T11:36:00.000-04:00

I had my 3-month post-treatment blood test yesterday. Now it will be a challenge to get the results of all of the other tests next week, with a holiday stuck in the middle on Wednesday, but not get the results of the 3-month PCR. It won't be impossible, just a challenge.

Let's assume my blood left the lab at 4:PM. Most of it goes to some central location for processing. The vials for the CBC, LFT, and TSH were probably tested this morning. Perhaps the vial destined for the PCR test goes to another location, in any case it's frozen, and stays that way until the lab accumulates enough vials of different patients' blood for the same test, then they test all the samples at the same time, once a week, or once every 10 days or less often, as needed.

I need to start calling my physician's ass's Monday afternoon for the CBC, LFT, and TSH test results. Since it's a Monday, getting in touch with him will be difficult. So, I'll keep trying on Tuesday, but he may not be in the office where I see him: the GI practice has another office, miles away - this office is usually open only on Wednesdays, but with this Wednesday being a holiday, the remote office could be open on Tuesday instead. If that's the case, then I'll have to try again Thursday morning. All I want to know is: am I anemic again, or am I neutropenic (if that's a word) again and how's my thyroid? If I can get this information, I will not call back for the PCR test results until September. If the virus is back, I don't want to know. There is nothing I'll do differently if it's back, I have no plans to go through HCV treatment again.

But, if I can't connect with the PA by Thursday morning, that's it, I'm not going to keep trying. Every day that goes by increases the chance that my frozen PCR-test blood got batched with other frozen PCR-test blood vials from other HCV patients that were drawn earlier last week, or even the week before, and that increases the chances that by late Thursday or Friday, my own PCR test results could be available. I don't want to know!!!

Concern about whether the virus has come back is just a small shadow on a large planet.

In reality...

2007-06-27T09:58:00.000-04:00

...I'm neither a brain surgeon, an engineer nor a rocket scientist, I can't concentrate for shit and keep making up excuses to avoid working. My job is rapidly deteriorating to boredom and I'd be leaving it now, if my husband wasn't leaving me.

Instead, I need to work at least another 3 years, probably another 6, thanks to him deciding he'd rather go off and have adventures than stay married to me. He did offer me the option of being here with me six months a year, then doing his other thing the other six months, but I turned that humiliating offer down, after having to ask someone what was wrong with that idea, and she told me it was humiliating (I was 4 or 5 months into treatment and couldn't think of the word to describe the situation.)

Sitting here staring at the hem on my shirt, white embroidery on yellow tunic shirt with Mandarin style collar

Interesting – if I put a period at the end of a sentence fragment, Word’s grammar check identifies this as a mistake and puts a green squiggly line under it, if I don’t put a period at the end of a fragment, no green squiggly line

It’s not that I have no work to do, it’s that I don’t want to do the work I have to do, I’ve been doing this job for more than five years and it bores me to tears. Guess that wasn’t a sentence fragment: I put a period at the end of it and no squiggly green line appeared. Neither was that. Nor this. Whoops – ‘nor this’ was a sentence fragment. Fuck it. 'Fuck it' is a valid sentence, no squiggly green line.

No one seems to have noticed that I’m not doing any work.

So, what else is going on in my life?

I have to have another blood test tomorrow – CBC, TSH, and the dreaded 3-month post-treatment PCR. Then I will try to reach my physician’s ass by phone on Monday or Tuesday, but if I can’t, Wednesday is a holiday, so I’ll have to try again on Thursday.

Waiting, waiting, waiting, I’m always waiting for something or other. I really have no control over the events in my life; I’m just waiting for others to act, so I can react.

Well, here's a picture of a cactus in bloom, taken in May, 2006 near Sedona, AZ. I'll have to look up the name of the Native American monument where I saw it tomorrow at my wonderful job, (the monument is run by the U.S. Park Service, and I bought a post card, which is on my bulletin board at work) I can't remember shit, it starts with a "*T."

*June 28, 2007 - Tuzigoot National Monument

A Wasted Day In Dilbertville

2007-06-25T14:07:00.000-04:00

"Alice is the only female engineer in Dilbert's department. She's habitually overworked. Her cardiovascular system is basically coffee. She has a quick temper when confronted with the idiocy of her co-workers. She does not handle criticism well."

I'm supposed to be working on a big project, but the direction it should take depends on a decision (supposedly reached last Thursday) on another big project. I have not been able to find out the decision regarding the other project. If that project is funded, I can proceed in the current direction on the second project, if it isn't the second project will take the place of the first.

On Friday, my boss sent an email to a higher up mucky-muck inquiring if the first proposal was going to be funded. No answer. Today, I sent my boss an email, asking if he heard anything about Project #1. (My office is less than 50 feet away from my boss's office, but email is the preferred method of communication with him, as whenever I walk into his office with a question, I get sucked into a discussion about this, that and the other thing - everything but what I came into the office to ask.))

Today he is holed up in his office, working on his own project, which is more important than mine, so I know not to bother him. I ran into him in the hall, on my way back from lunch - an hour ago - and asked him if he heard anything about my project.

"No," was his answer.

"Well, could I call Mr. P., (the big mucky-muck) and see if he'll tell me if my project is getting funded?" I asked.

"No," was his answer. "I'll call him later this afternoon."

It's now 2:18 PM here in Dilbertville and my boss is still having lunch. Big mucky-muck is probably thinking about where he'll go for Happy Hour tonight.

It's time like these that I miss drinking the most.

Someone else with HCV

2007-06-22T21:05:00.000-04:00

Last night I talked to one of my oldest friends, the only person besides my husband and one cousin who knows I have hepatitis, and she told me about another friend of hers that I only met a few times, the last time at least 35 years ago, who also has HCV.

She must be type 1 and has been on and off treatment for years, she sounds about as crazy as a loon - she lives in the same area as my friend, but won't visit, pick up the phone, answer the door. (As my friend was telling me this, visions of me just 3 months ago, collapsed on the sofa, sprang to mind. Memories of wearing a hat and sunglasses when I walked the 50 feet from my car to my office, during the time I was trying to evade a summons, also the wonderful day when I DIDN'T almost shoot someone.)

But, for some reason the friend of my friend and her husband are supposed to visit my friend next week. (My friend lives an hour and a half away and has two big parties a year: one on the last Saturday in December, one on the last Saturday in June. I didn't go to the one in December and I'm not up for the one next week either. I told her I'd try to visit in August, when I feel capable of driving that far.)

But, I told her to ask the other woman to call me, or at least give her my phone number, I don't know if she'll call - I barely remember her, she probably doesn't remember me either.

She has been on and off interferon for years and has to be close to 60 by now. With thinning hair and the other ravages of multiple treatments, she still drinks (but only on the weekends!) and talks about dying young and leaving a good looking corpse!

I don't know what I'd say to her if she does call - that I went crazy when I was on treatment, too?

Well, I have a week - maybe I'll tell my friend not give her my phone number.

I moved the picture of my dog up, because I like it near the top.

Summertime Blues?

2007-06-18T10:34:00.000-04:00

Some people get this seasonal affective disorder in the winter, I tend to get it in the summer.

A few weeks ago, I spent several hours on the phone with the gate keeper of my insurance company, trying to find a psychiatrist that spoke English as his/her first langauage in my area, who also accepted my insurance. No such luck.

Just now, I heard an announcement on the radio, a study group is looking for women of my age experiencing depression. Perhaps I'll call, I don't really feel depressed at this particular moment, but who knows? Maybe I am, really and don't just know it - I am experiencing difficulty falling asleep and staying asleep.

I'm also very upset that I couldn't get a picture of my dog uploaded last night!!

The study offers paid doctor's visits, medication, lab work - just what I need, more holes punched in my arms - plus possible compensation for my time and travel if I qualify. I think as soon as they hear the words 'recently completed treatment for HCV,' I'm not going to qualify.

Maybe it's just that, exhaustion due to lack of sleep, fights with Blogger over uploading a dog picture, plus a boring job, and the FFEH, who is now wavering about: 1) if he is leaving - after we each spent $600 to work out a property settlement agreement and I began the process of taking over the house loan, made more difficult by the mortgage lender having their loan assumption office in Alaska of all places! Not gonna mention the name of this company, but there's a song about them in "The Music Man;" 2) how long is he going to be gone, if he leaves; and 3) do I really want to divorce him - if I just wait a while, he thinks maybe he'll croak from one of his multiple real and imaginary illnesses. (He really doesn't want me to drop his health insurance coverage!)

Hope it's just that, not the summertime blues, because as we all know...
...there ain't no cure for the summertime blues!

Must get that dog picture posted tonight!

Success! Meet Chloe, my in-house support system during treatment!

So, if this is as bad as it gets...

2007-06-11T13:11:00.000-04:00

...I can live with it, and if anything else happens from here on - I'm not blaming it on HCV.
I will get depressed - depressing things will happen.
I will be happy - happy things will happen.
I will be normal - normal things will happen.

Just don't fixate on my hair, and I'll try to ignore it as well.

Returning...

2007-06-09T18:06:00.000-04:00

...to my normal life
very weird - it waited for me
well, most things did - some are moving on without me
something new started the day I started treatment, and hasn't ended yet
but most things are just as I left them
with some dust on them, well a lot of dust on them...
some things have grown, the grandson born last June is almost walking
the grandaughter is talking
two plants have died, and I'm going to lose another one - it's beyond saving
but I think I may be back....
to my normal life, whatever that is.

The Good

2007-06-04T07:16:00.000-04:00

If anyone has been reading the Bad and the Ugly, it is only fair that I write about the good:

June 2, 2007 - Two months later Post Treatment (give or take a few days) - today I did the most walking I've done since before starting treatment in October.

Did some shopping, the same outlet mall I went to in April and couldn't walk from Peppridge Farm to Old Navy - I parked near Old Navy this time, walked all the way to the end and back without getting exhausted. (OK, I stopped in the middle, sat down for a few minutes and finally connected with Star over the phone - Hi Star :}! )

I drove close to 70 miles, made 2 trips to Walmart, didn't get mad when the security person at the Walmart exit heard the buzzer go off after I went though the exit and made me come back and have my bag checked.

She threw a little fit, however - it seems the check-out person was supposed to have deactivated the sensor on the batteries I bought and the exit lady was upset that the check-out lady didn't do her job properly, I tried to calm HER down in fact. I mentioned that she and the check-out lady were both enslaved to the same corporate master, sisters in the same fight against "The Man," she wasn't buying it - said she would report the check-out lady, Well, I tried. It's sad - People on the bottom of the socio-economic scale turning on each other....

A month ago I would have said something like - "take your d***m battery and stuff it down your throat, I don't want it." Or, I would have run (or tried to run) through the sensor and reach my car, I probably would have been tackled by big, bulky outside security man.

Ate dinner out - OK, it was a lousy chain restaurant.

I think this was the best day I've had since stopping.

10:40 PM, still awake - OK, I can see a problem developing here, must get to sleep or I'll pay for all of this activity tomorrow.

June 3, 2007 - I didn't feel too bad!

P.S. - old hair is still falling out, but new hair is coming in...unfortunately, the new hair is all grey - but it's hair and it can be died, probably easier than my natural darkest brown color can be died! :]

Update For May

2007-05-23T08:08:00.000-04:00

This is early, but I think this is going to be all there is for May:

May 7, 2007 – I’m still experiencing periods of exhaustion, but these can usually be relieved by a one-hour (after work) collapse on the sofa and a 10 – 15 minute ‘cat nap.’ I can’t exactly do this at work, though. Here it is 1:50 PM, and I am sweating out my last hour at work, before I can leave, drive ten miles home, and then collapse. And dizziness, I’m still feeling dizzy on and off – today this has been more noticeable than before. Today I did walk the equivalent of one city block – that should be 1/10 mile, and I should force myself to do this every day, or I’m never going to regain any stamina, and by the way, my Handicapped Parking Pass is going to expire at the end of the month, so I’m going to have to park further from my office in a mere 3 ½ weeks. I wonder if I can include the longer walk from car to office and back as part of my 1/10 of a mile. I should really try to increase the distance I walk each day.

May 8, 2007 – I know it’s early in the month, but I’d like to nominate the following exchange between my husband and myself for the Bizarre Moment of the Month award. I’m scheduled to have a minor surgical procedure on Friday the 11th and he is driving me there and back. I’ll be given some injection of la-la drugs that will either knock me out, or make me feel no pain. This morning, my husband asked me if it would be OK to stop at Home Depot on the way back from my surgery, so he can pick up some 2 X 4s!

I reminded him of my last surgical procedure, last summer, which was my liver biopsy, for which I was given similar anesthesia, and the drive home from that, in which I believe he had to pull the car over twice, so I could vomit into a plastic basin I stole from the hospital, then empty the contents along the side of the road!

Since I finished treatment and am only doing monthly blog updates, people have asked me “how is your marriage going?” Well, you just read how it’s going. I’m looking forward to this husband becoming my First Future Ex-Husband (FFEH), and I’m almost ready to start looking for my Second Future Ex-Husband. (BTW – we are not stopping at Home Depot on the drive home from surgery.)

BT, BTW - FFEH is having a colonoscopy and endoscopy on May 29th, and since I'm driving him, I'll be sure to stop at Macy's to pick up a tube of lipstick or new perfume on the way back from HIS procedures! ;}

May 18, 2007 – Made it through the surgery, today I have to call the doctor for the pathology report, to see if I’m going to be OK or need more surgery. Just called – I don’t have cancer – good to know! Feeling stronger each day, but I’m still not exerting myself by exercising.

Saw the thyroid doctor yesterday – TSH recovering nicely, due to the abrupt cessation of interferon and the increased thyroid medicine he gave me in January. One more TSH blood test scheduled for June 1st to see if I still need that additional medicine or can go back to my pre-treatment dose.

May 19, 2007 – Drove to PA today, well had the FFEH do the driving, as we were delivering some furniture to our daughter, who now lives there. Found a new way to get there and back, that doesn’t involve going through small towns that make most of their income through speed and traffic light enforcement. It may be about 5 miles longer going that way, but it’s a much prettier ride, at least in the Spring, when everything is green.

Total exhaustion ensued upon leaving her place. The FFEH drove home via downtown Gettysburg and I made him drop me off in the town square, where I found a bench, until he could find a place to park the car – not easy on a day when most of America was having a yard sale – one American selling their old crap to another American – and the town square was taken up by “antique dealers.” When did old records by Bread get to be antiques? Then we had lunch. I walked into a ‘real’ antique store that sold supposedly real shell casings from the Civil War and bought one that had been used the Union Army.

The store also had a collection of books about Lincoln and the battle. They were hanging under the cover page of a recent issue of 'U.S. News and World Report' magazine, which had a picture of Lincoln on the cover, and an article about his Gettysburg Address (as in speech, not where he lived) inside.

On top of the magazine cover was a headline for another article inside the magazine: FDA Approves Breast Implants for Use.

I found this hysterical – a teaser about silicon breast implants on top of a picture of Lincoln, and pointed this out to the store owner, who hadn’t noticed it before!

OK, I’m still having some manic moments, now and again.

The Accidental Liver Function Tests

2007-05-10T18:47:00.000-04:00

I was not going to do this - have a liver function test. I didn't want bad news, if things were heading south, I didn't want to know.

But, on May 2nd, my doctor ordered a CBC with a Complete Metabolic Profile, for some surgery I'm having tomorrow, and lo and behold a Complete Metabolic Profile includes an ALT and AST.

Being the anal-retentive person that I am, I was not happy with the verbal report from the doctor, relayed through my husband that "everything is fine." Mostly concerned about my Hgb and ANC numbers, I had to get a copy of the test results, to be filed with the rest of my collection of lab reports, not knowing there would be LFT results on it.

My copy finally arrived today:

ALT = 17
AST = 15

Lower than they were at any time while I was on treatment. How wild is that?

My Problems Pale in Comparison

2007-05-01T09:19:00.000-04:00

At the One Month Post-Treatment Marker - How I'm Doing:

Physically - The pneumonia is mostly better, but, I still cough occasionally.

The hearing loss in the left ear is driving me nuts and I finally wanted to have a tube put in, like a little kid, on April 18, 2007, but that ship had sailed, the doctor couldn't justify it medically, and after a hearing test that showed I have gotten some hearing back since the end of January, all the doctor did was drain the ear.

The procedure had me crying like a baby after the doctor did it - a little misunderstanding between he and I regarding him saying 'he was going to numb the eardrum before the procedure,' and me expecting the ear equivalent of novicane so I wouldn't feel a thing, and all I got was the equivalent of the gel some dentists put on your teeth before they give you novicane.

It's still too soon to tell if it did anything to help, but I also have a bad case of tinnitus, that has developed in the past week or so...

...I can't believe Kurt Vonnegut is gone...

I still feel like I went 15 rounds with Mike Tyson, when he was in his prime, but at least he's not punching me anymore. Aches and pains in joints are slowly improving, digestive system is slowly getting its shit together. I'm still running occasional low grade fevers no doctor can explain. The ENT dr. ordered a new blood test to test for signs of infection, which would explain the sudden hearing loss that happened on 1/29/07 and is a partial hearing loss and high pitched whine (tinnitus) still going on now. (I have since learned that a sudden hearing loss should have been treated by an ENT doctor within 24-48 hours of its start, a little detail my Primary Care Physician declined to tell me, when I saw him on 1/29.)

So it goes.

But, when will I ever learn?: never let anyone except a phlebotomist, who does nothing all day but draw blood, go near my veins. After the ENT nurse made one stab at a place on my arm where most people have veins, but I do not - and this was after I showed her the place where my one vein is, easy to spot due to the bruise from the previous week's CBC blood test - and did not draw blood, I said, 'that's it, give me a lab slip, I'll go to a lab.'

New and emerging physical post-treatment side effects - increased itching, and I seem to have developed an allergy to elastic. I itch the most in places that touch items of clothing that contain elastic. If you really want more details, I may have to buy 4 or 5 ankle length skirts and go commando during the summer. (I may also need elective surgery to lift up two other body parts to where they used to be, and then I won't have to wear any type of underwear at all.) Or, I could just go see my dermatologist...

My hair is still falling out by the brushfull. And it's on items of clothes I take off, bathrobes, pillows, the floor... I had another 'haircut that no one noticed.'

Now, regarding the mental side effects: OK, let's get this cleared up for once and for all.

When an American says, "I'm sure there must be a loaded gun around here, some place," there ususally is, but that does not mean that someone (that would be me) is actually going to pull the gun out and shoot someone else, especially if the person who made the statement (that would be me) can't remember the combination of the safe where the loaded gun is kept!

So, with paranoia striking deep, For What It's Worth, I had to go back to being curtained, and take my picture off the previous post, due to a big, ugly brute banging on my front door on April Fools Day and flashing a piece of aluminum foil at me, when I peeked through the window. His pretext, it seems, was to serve me with a summons, to give a deposition in a civil case. I already agreed to testify at the trial in June. No possible good could have come from me opening that door and accepting the summons to be deposed on April 12th, as I was still raging with interferon, and probably would have torn it up and thrown it back at him..or worse, then been arrested for assault.

The man stood in front of my house for a good 5 - 10 minutes, after I had peeked out through a shade on the window for a second, yelling my name and threatening to call the police. My dog was going wild. I had to get away from the front door. (What must my neighbors think of me?)

For a person my age, I could still crawl on my belly like a snake amazingly well, to get from the living room to the bedroom, and avoid being seen by the angry man with the fake badge, through the one front of house facing window that did not have its shade pulled down. If he could have called the police because I refused to open the door, I'm sure he would have called the police. If the police had arrived, I still would not have had to open the door. (3 back and forth frantic phone calls to my husband, who was out, were required to get that concept through my brain fog: don't open the door, if the police have a warrant, they can break in, and you can get the door fixed later. Don't call the police yourself to get the man removed or they will come and they will make you open the door or break it down. Don't open the door!)

April Fools Day was the last day that I could have been served the summons, been given the required 10 days notice, and been forced to give the depostion on April 12th. So, I sucessfully 'evaded service.' But that was not the actual alleged gun episode...

The actual alleged gun episode - I'm getting to it...

So, despite what you may have heard about me, I DID NOT pull a gun on a hapless door repairman on April 2, the day after the big brute with the fake badge incident...but I did think about it, I just couldn't remember the combination on the safe.

The impulses to shoot people, or just wave a gun in their faces, or pistol whip them are fading. I'm still having a little road rage, but road rage goes on all the time in the U.S. - and don't tell me everyone who gets into a little road rage here is on interferon!

Then there's the patient rage at my physician's Ass! I found out there was a Hepatitis C patient mental health questionnaire that my physician's Ass had never given me, by seeing a substitute physician's assistant on April 12th who first thing - handed me a Mental Health Self Assessment Questionnaire!

I found this news hilarious and burst out laughing. (OK, so I still have a little mania thing going on, too.) The sub. P.A. was concerned that I haven't been filling this out each month.

I laughed some more, and looked through it quickly (I should have kept it!) - Was I experiencing feelings of sadness, desperation, suicidal thoughts? - well anyway, that was the first time I saw it, and it did not ask about mind reading skills and ability to predict the future!

The sub. P.A. asked me if I would mind filling it out.

What's the point, I replied? Only during the week of April 2nd, as the interferon cloud slowly began to lift, did I begin to realize that except for perhaps the initial time I met him, at NO time during the past 6 months did my P. Ass ask me any questions about any mental side effects.

And, I revealed a little about my manic episodes, the laughing at inappropriate times, and I say I'm going to write one doozy of a letter to whatever authority licenses Physician's Assistants in my State, when this is all over. (But, I don't mention the mind reading/psychic powers - hey, they're not on the list.)

Anyway, when I saw the sub. P.A. on April 12th, I learned I was undetectable as of the end of 24 weeks of treatment (March 29th), was sent to do one more CBC to check my whites and ANC, and went back to work full time on April 16th.

From April 16th to 17th, it took me five phone calls and a fax to get the results of my April 13th blood test from my regular physician's Ass. My April 13th blood levels were all normal, not as high as they were before I started treatment, but I was told to abandon the use of all rescue drugs and let things rise by themselves. I was pronounced fit to have a tube put in my ear on April 18th, although the ENT ultimately chose to not do this - and it was up to my ENT doctor as to whether he wanted to give me antibiotics after this, but my WBC and ANC didn't require them.

I'm still tired, but this forces me to use my brain instead of my body, maybe not the best thing to do, if I want to get back some physical stamina, but, it's all I can do right now. Stopped at an outlet shopping mall on April 21st, just wanting to have lunch at the food court and use a $10 Old Navy coupon. I found I parked too far away to walk to the 2 places I wanted to go. Walked back to the car, passed a place that sold bread and bought some raisin bread. Drove closer to the Food court and Old Navy, but there were no parking spots nearby, well the coupon is good till June, if I don't lose it. This obsession to use a $10.00 coupon must be interferon fueled, even a month post last injection. Ordinarily, I toss out coupons worth less than $25.

Still hungry, I decided to find the first fast food place on the right side of the road (OK, left hand turns are still a bit of a problem) and eat there. It turned out to be a McDonalds, that I almost missed, so I parked near a lawn care store next to it. Ate my 1/4 pounder with cheese, then walked a short distance to the lawn care/hardware place and got 4 bags of mulch and some weed killer and fertilizer, thereby avoiding a trip to Home Depot. Very proud of myself.

April 24th - My G.I. doctor still hadn't signed my return to work full time form, but I went back to work full-time (more or less) on April 16th. I accomplish virtually nothing. On the 19th, I had a productive day and wrote 2 letters. On the 20th, I pushed papers around and surfed the internet, (this is what I do most days at work: surf the internet and chat with friends over the computer, I've recently added updating my blog to my daily tasks, that's why this post is so long) then left early for the Sudden Hearing Loss blood test. I forgot to get an excuse note from the lab, so my company will charge me with a 'sick leave occurence.' Well, it's April already and this is my first occurence (use of sick leave without a note) in 2007. I'm allowed five, before counseling is required.

April 25th - My return to work form finally signed, I picked it up from my doctor's office and ran into my husband's cousin and her husband. The cousin's husband said I looked good! Men, what do they know! (Tip for the ladies: if your hair is thin, show a little cleavage - men won't look at your head!)

April 26th - I watched 3 busloads of soldiers from the National Guard Armory, located a mile away from where I work, go off to war. They drove right past my office. Eight of the 140 citizen/soldiers work for my company.

How fucked up must my company be to have someone assigned to harass me full-time regarding my doctor's notes, but no one noticed that 8 people here belonged to the same National Guard Unit?

Anyway, I had never actually watched 140 people go off to war before, and it was pretty emotional. I was the only one (that I saw) out of about 100 who gathered to wave goodbye to them to actually cry, but I did manage to hold my tears in until the buses passed, so the soldiers didn't see it. Then, a few people saw me crying and came over and hugged me or patted my shoulder afterwards. The crying was not an inappropriate reaction. This "Love the soldier, hate the war," crap is a major disconnect, even for the people without brainfog.

May 1 - Bad news from all around this past month regarding relapsers. One expected it to happen, one I didn't really know, one was ever hopeful it wouldn't happen, the other person was the very last person I would expect this to happen to...if a vote had been taken on who would be the most likely person to beat this virus, this person would have won the vote by a landslide...I can't comprehend the workings of this virus.

140 citizen/soldiers with an uncertain future, relapsers with uncertain futures.

Who the fuck am I to complain?

My problems pale in comparison.

"Time It Was, It Was A Time, It Was"

2007-03-25T19:58:00.001-04:00

"a time of innocence,"

...and a time of innocence shattered. I'm the type of person who, when taking medicine for any reason (including a period of major depression about a decade ago), and experiencing ANY side effects I didn't particularly care for, would simply stop taking the medicine and take my chances with the disease for which it was prescribed. This time I couldn't do that.

It was a short time in the general scheme of things, half the time that about 90% of the people with this disease are required to treat it.

To make up for winning the half marathon lottery, I whined and griped and complained about every little ache and pain about twice as often, and twice as loudly as did those who did not win the lottery.

"a time of confidences."

A time of people I never met knowing me better than those I've known for half a lifetime or longer, because they cared, because I let them know me.

My brother, JB, and sister, C1 (who is C, by the way, that you had to be C1?). Umm...that would be MY brother and MY sister, not each other's brother and sister - because that would be so WRONG on so many levels (none of us being in West Virginia!) - who gave me the courage to get started, provided endless laughter and diviersions along the way, and reconnected me with my inner troublemaker. (But, Mom still loved me the best, and you both still have no idea what that means or where it comes from!)

My "blog brothers and sisters," every one of them young enough to have been my sons or daughters, who surrounded me with love, support, and simply saying "hello" every day, from the four corners of the world: the "true blood brothers," one from the East, across the mighty sea, and one from the West in black and white; the ample poet to the South; the shining star to the North. Thank you for letting me be one of you. (Even though what I wrote was crap in comparison to what you all wrote.)

A time of confidences betrayed by the one I used to love the most, and having no Plan B then, and of still not having a Plan B, as I have not yet looked forward past the actions of this day (take last pills). So, now I'm going to have to come up with a Plan B, a Second Act to my Life. Even though F. Scott Fitzgerald said that there are no second acts in American lives. I'm going to prove him wrong, what did he know - wasn't he an alcoholic? Anyway, he's dead I'm not, and I've already achieved the impossible by becoming the oldest living female blogger, so the rules of the 20th Century no longer apply, if they ever did.

A time of plots and intrigues and psychic powers and mind reading skills I'd like to unload. (Seriously, I wasn't ever able to read your mind - unless you were trying to deceive me, then yes, you should still worry, I can still read your mind.)

"Long ago, it must be, I had a photograph.."

...well I had a photograph here, but even though it's been almost 2 weeks since the last interferon dose, the paranoia lives on...so the photograph isn't here anymore. If you missed it, well it wasn't much, I'm not a hottie.

"Preserve your memories, they're all that's left you."
(Paul Simon)

Well, I hope they're not all that is left. I hope I don't take the easy route and push this all out of my memory as soon as possible. I hope I've learned something from it.

I must have learned something from it, I'm just very fragile right now (and as another comrade in arms would say, "please consider my feelings and don't post any derogatory remarks)...I just don't know what it is right now.

"Th-eh-th-eh-Th-eh-Th-ah...That's All Folks"
(Porky Pig)

Well, maybe I'll be back with some good news in July...then in October...

Gonna Try The Floating Thing

2007-03-22T13:29:00.000-04:00

3/22/07 - Be back next week...or sooner if it doesn't work!

Two hours later, therefore sooner, not working...too much time spent alone on the ugly putty colored sofa in the past 24 weeks, too much time worrying about germs, whether am I ever going to hear out of my left ear again, and what is the half-life of interferon: how long does it take your body to get rid of it?

3/23/07 - Well, this is not working, not enough energy left to let go and float. I should have planned better, not wasted so much of it bending over to pick up my hair from the floor...but really, I couldn't deal with looking at it all the time...but I guess I should have just not looked down, not looked back. This pneumonia thing was the next to last straw (don't know what the last straw is/will be). I think I would have had enough fuel to get through 24 weeks, including this last week...well 10 days, cause I moved injection day up by 3 days during the 24 weeks...but due to the pneumonia thing I STILL CAN'T GET RID OF, I'm running on fumes.

Why does the doctor say I'm better, should be feeling better, when I'm still coughing and partially deaf? Why does my husband, who stopped coughing weeks ago, get called back for 3 x-rays and then a cat-scan yesterday, when I have to plead for a second x-ray, because my chest hurt so much, it felt like I cracked a rib? So, now he's now thinking he has cancer, what a freaking hypochondriac! Then, he mentioned TB...and that was enough, I walked over to the fridge, grabbed a dose of Neupogen, and injected it then and there, right in front of him, and without even using an alcohol wipe.

So, on top of everything else, we're now having this constant argument about who is making whom sick. So, I do have to watch my back all the time, I can't float.

Week 24 - Just Like Any Other Week

2007-03-21T15:40:00.000-04:00

After one day of 'the world has been lifted off my shoulders,' it's back to reality today (how many 'ls' in reality?). Woke up at 5:AM with "the headache," gobbled (how many 'bs' in gobble?) 6 tylenol by 1:PM, realized these were not going to get me through the day, took my frozen peas out and put them on my head...this same bag of frozen peas has been used as a headache remedy so many times, that it now smells, so I got rid of it and took some ibuprofren (how do you spell that?).

I was looking for a police officer to arrest the person who had parked in MY handiciapped parking place this morning at work...until I noticed that car also had a handicapped parking pass. When did my company hire someone else with a handicapped parking pass? Why wasn't I notified?

So, now it's 3:47 PM. and, just like any other week, I'm looking forward to my 4:PM ice cream with a side order of 400 MG of ribavarin, and the 'bugs crawling through my veins' feeling that gives me the rest of the night, that makes it really hard to fall asleep.

But, after tomorrow's a.m. pills, I get to fill up my pill organizer for the very last time!!! :}

Stopping the War

2007-03-19T12:05:00.000-04:00

I just did injection #24, one day early, so phase 1 of the HCV war is over for me. People have questioned why I think I'm going nuts - well here's an example: I could not think of moving up injection 24 by a day myself - someone else suggested this to me, as a way to get it over with. Had this person not suggested this, I would not have thought of it. Things are that cloudy in my brain.

Phase 2, riba pills, is scheduled to end on March 29th. As the great American philospher, Yogi Beara, once said "it ain't over till it's over," and it ain't over yet. I'll let you know when it's over.

I have one dose of Procrit left, to provide an orderly withdrawal for the Hemoglobin troops, and will probably use this on March 29th, after my final pills and blood test. I have several doses of Neupogen left, and will probably use two more to support the WBC and ANC troops, who are still being attacked by the pneumonia insurgents.

Thanks to everyone who has helped me get through this. Congratulations would be premature at this point. "It ain't over till it's over," and it ain't over yet.

Gradually...then Suddenly

2007-03-17T20:40:00.000-04:00

After reading "Prozac Nation" in 1998, while going through a period of depression myself, due to a delayed reaction to my father's death in 1996, I would have never thought that Hollywood could make a movie out of that book.

Well, they did, and I saw it last weekend. The movie is nothing like the book, and the main character does not appear to be depressed.

Anway, the movie starts with the actress who plays the main character, doing a voice over, comparing the way she became depressed to the way some millionaire (or perhaps billionare) went broke - gradually...then suddenly.

This is how I'm losing my mind on interferon - gradually, then suddenly. Not at all, actually, for the first 12 weeks...then gradually in January...a little faster in February (but not fast enough to notice while it was happening, only noticible now, looking backward)...now suddenly.

And what happens when it's over - is this like a game of 'Crack the Whip,' where children hold onto eachother and spin around, and the one on the end comes loose and goes flying?

Is it like a 33 RPM record that gets to the end, but the record player keeps playing, and the record keeps spinning around, but no music plays?

From what some people have told me lately, from what I've read, it seems the laws of physics must apply. It must be like a sudden stop in a car, when your head and shoulders keep going forward. Which law is that? For every action there is an equal and opposite reaction? There must be more of them, (that's why they call them laws of physics, not law of physics), but I don't know them...it's not important, I think the one I mentioned is the important one here.

I'm fastening my shoulder/lap seat belt real tight.

Low Battery

2007-03-16T10:29:00.000-04:00

Don't have that much longer to go, but I don't know if I have enough power left to make it there...

This pneumonia/ear thing, which has been going on since Jan. 26th, isn't helping matters, but I probably should have kept something in reserve for the end.

Right now, I'm obsessing about riba pills.

Yesteray I thought that if I just took one extra on the weekends for the next two weekends, I'd be done with them on March 27th, 7 days after my last injection.

Then I realized that at 4 a day, I'll only pick up one day - be done by the 28th instead of the 29th, and if I had wanted to be done on the 27th, I should have started this 'one extra pill per day on weekends' plan two weeks ago...

Anyway, I've been taking 4 ribas a day since Oct. 12th and I don't get nauseaus from them...don't know what a sudden increase to 5 a day would do my stomach, not to mention the old Hemoglobin count.

Is there a point to this post? With all of my psychic abilities and mind reading skills, I wish I could read my own mind!

Tirade D'Jour

2007-03-15T12:58:00.000-04:00

Things that should be priced and sold in pairs: shoes and windshield wiper blades.

When you go into a shoe store and there is a sign that says: "Shoes $9.99" do you ever think that's the price for one shoe? No, that's the price for a PAIR of shoes.

I took my car for an oil change to a national chain called Jiffy Lube (may as well name the company), the place that used to call itself the "Home of the $19.99 Oil Change." Well, inflation has driven that price up to $32.99. They also call themselves the "Home of the 10-Minute Oil Change," well, that means ten minutes, if there is no one ahead of you, but that's all ancient history.

Anyway, I knew I needed new windshield wiper blades (sign #1 - the left one is ripped), so I looked at the price list on the wall: Windshield Wiper Blades - $9.99, and told the service person to put those on the wipers. The sign did not say "Windshield Wiper BLADE - $9.99" it clearly said Windshield Wiper Blades. I thought I was getting 2 for that price.

Yada, yada, yada, 1/2 hour later...just as doctor's office now have nothing but medical programs running on the TVs in their waiting rooms, oil change places now have nothing but boring car care programs running on their waiting room TVs.

I see my car being driven around the front of the building, I go to the cash register to pay - $56 + some change for the experience!

"Don't know much about Algaebra, don't know what a slide rule is for," but I do know that $33 + $10 + 5% tax does not = $56 + some change!

I look at the detailed bill as it prints: lo and behold $20.98 including tax for the windshield wiper BLADES, that, it turns out, are not sold in pairs!

By this time, the wiper blades are already on my car, and my credit card has already been swiped.

"You wouldn't do this to a man," I say, my voice rising. I look at the only other person in the waiting room - a man, who had previously griped to me that these Jiffy Lube places were total rip-offs, and if he hadn't recently suffered a back injury he'd be changing his own oil.

The man at the cash register does his "lady I don't know what you're talking about," look and hands me back my credit card.

I assess the situation. He looks to be my age or older. I have the element of surprise on my side - I don't think he expects a woman of my age to leap across the counter and attack him.

But, I'm hurting from 22 + weeks of HCV treatment, a possible cracked rib causing pain on my right side, and here today/gone tomorrow/back again today anemia.

I fold my receipt and stuff it in my purse, declare that "the next time I want to be ripped off, I'll take my car to the dealer." and stomp out.

Jiffy Lube - don't go there. Tell a friend.

Just a Touch of Insanity

2007-03-13T20:49:00.000-04:00

Ok, I am going a little crazy here at the end. But, I'm harmless...I may be the Bitch of the Century - this century, the one that just started, there may still be 93 (or is it 94?) years left in it, but I think I'll top anyone else in the bitchiness category, including those persons not born yet.

So, if I say or do crazy things...

what am I trying to say here?

I do have moments of lucidity, and at those times I drive, work, go food shopping...there is no food left in any store that interests me, no form of chocolate even. I am bored with cooking and eating, yet I get hungry, then eat the only things available. The only thing that is saving me from fast-food overload is that there are no fast food places on the right side of the street on my drive home from work, and I feel incapable of making left-hand turns now.

These moments of lucidity are interspersed with hours of pill counting - why do I bother? I just counted a few hours ago and can't remember how many are left - seconds of syringe counting - "One - Ha, Ha, Ha," as the Count on Sesame Street would say, my favorite number (next to none) - minutes of yelling at Rosie O'Donnell and Joy whatever her name is for being mean to Elizabeth whatever her name is (from Survivor) on the View, before switching to The Price Is Right (a much better alternative for 11:AM) - and constant fights with the husband over the thermostat - he wants it hotter, I want it cooler.

Today the outside temperature reached 73, as it did in the house and there were no fights over the house being too hot or cold.

Soon this will all be over and we'll be fighting over what temperature to set the air condiioner. Or, maybe there will be a Spring, and we'll open the windows.

Still Undetectable

2007-03-12T17:13:00.000-04:00

Undetectable on Nov. 30, 2006; still undetectable on March 1, 2007. Don't know why I put myself through the second test, especially after deciding (after I had the test) I wasn't going to extend my treatment...but this is what I do: obsess about things that are beyond my control.

Some people call that 'worrying' and tell me that 'worrying is a useless emotion.'

Onward and upward!

Diary of a Mad White Woman

2007-03-12T14:00:00.000-04:00

I guess I had another Riba Rage incident, this time directed against myself, which caused yesterday's psychotic episode.

It's actually good when these things happen on weekends, and I can't get into arguments with my boss and co-workers, because I need the bi-weekly paycheck. Well, I could get into arguments with them on the weekends, but I'd need to contact them by phone, and it's just too much trouble.

Much easier to accuse my husband of trying to hack into my computer and email, then have a fight with him about that.

So this is the second weekend in a row that this has happened. Reminds me of the saying: "The beatings will continue until morale improves."

The psychotic episodes will continue until the patient stops the interferon injections.

"Paranoia Strikes Deep"

2007-03-11T17:03:00.000-04:00

"Into your heart it will creep."

Well, I think my husband (or someone else with his computer knowledge - and there is no one else with his computer knowledge, which goes back to the beginnings of NASA in the early '60s) has - for lack of a better word - fucked up my email account.

I hope he's just fucked it up and is not reading all my messages, well he's asleep now, he's not reading anything.

Anyway, if I can't get back into it - it's a yahoo account - what do I do? It recognizes me and my password when I log in...and says I have 5 new messages...it just won't let me see them. Is there a phone number at yahoo that I could call?

I've tried to log in now on two computers. There goes my entire address book, with hundreds of addresses. All my friends and relatives.

If I had yours, please send it to me again in a private message.

And then...the email started working again. Must have been a yahoo problem. After we had a fight about him hacking into my computer. After I discovered that if I wear a bra all day I don't cough as much. After he told me 'why don't you list that cure for coughing on your blog?' Which I didn't think he knew I had.

"It starts when you're always afraid."

"Climbed the Mountain and I Turned Around'

2007-03-09T11:41:00.000-05:00

Well, not all the way up the mountain, still stuck at the same place I reached on March 6th. My PCR results won't be in until March 12th, and I made an appointment with the Ass for March 13th to talk to him about them and why he ordered another 12 weeks of medicine for me on March 6th, as it is easier going to his office, paying $25.00 and letting him bill my insurance company for the balance, than it is to try to reach him by phone.

And I'm trying not to read anything into the fact that my 8-week PCR test was completed in 8 days - why is this one taking 12 days? It doesn't necessarilly mean that the test came back 'detectable' on March 6th, and the Ass had them re-run it.

And, I'm not doing my March 13th injection (#23) until after I get the March 1 PCR results, and if I'm back to being detectable, I'm not doing that injection.

"And I Saw My Reflection on a Snow Covered Hill"

And I realized that my hair looks as bad from the back as it does from the front. Massive comb over efforts are required, along with 6" platform shoes, so no one can see the crown of my head, never letting anyone see me fron the rear, and the discontinuation of wearing the woolen winter hat.

If I get pneumonia from not wearing a winter hat...oh wait, I already have pneumonia. Have, not had, as I am still coughing up large quantities of gunk I won't even look at, but every medical professional who looks at my x-ray or listens to my chest tells me I'm fine...but I'm not fine. Fine people don't cough up gunk.

And the ear doctor who looks in my ears tells me they are fine, and the G.I. physician's Ass who looks in my ears tells me they are not fine, he can see that the right eardrum doesn't look normal.

And, to build up the old white blood cells and fight the bacteria that must still be attacking me, even after 2 rounds of antibiotics and a round of Prednisone, I now inject Neupogen, which lists the Ecoli bacteria as one of its ingredients, into me twice a week, and a day or so later, I feel better, but only for a day or so. (I should probably be taking 3 injections a week, but I don't have enough stockpiled to do that many.)

Then the cough and the ear get the better of me, and I slip down the mountain and have to pull myself back up to where I was on March 6th. And the cough and the ear are not going to get better for good, and for once and for all, until I stop injecting Interferon into my body every week.

So, I signed up for 24 weeks and if I'm still undetectable, I'll do the 24 weeks and maybe I'll get rid of the cough and the ear thing in April, if and when my immune system ever gets back to normal.

But if I find out on the 13th that I'm not undetectable, then that's it, game over, mountain climb over, I'm going to call a helicopter to get myself down. I'll continue the Neupogen until the immune system is back to normal, if ever, but I'm not going to continue the HCV treatment, I'm not going to extend.

Don't anyone try to talk me out of this...and thank you Stevie.

Today's Panic

2007-03-07T11:42:00.000-05:00

On Monday, my 'specialty drug' pharmacy noticed I'm about to run out of HCV drugs, so they faxed a reminder request to my Physician's Ass - who I just saw Monday and did not have the results of the PCR I had on March 1st - and Tuesday he faxed back a 12-week refill of the meds to the pharmacy! So the pharmacy called me last night (of course after the doctor's office closed) and asked about arranging shipment and I freaked out!

I can't believe the PCR would have come back detectable and the Ass wouldn't call me to tell me this before ordering 12-more weeks of meds. I think he just keeps forgetting i'm only doing 24 weeks and automatically approved it without thinking. At least that's what I hope happened.

If I'm back to being detectable, doing another 12 weeks of Pegasys makes no sense, in fact that's the definition of insanity: to keep doing the same thing over and over, and expect different results.

Anyway, I'm rambling now. I'm trying to call the Ass now, and get to the bottom of this. But he's in a different office than the one I go to today, and doesn't have my file there.

If i'm back to being detectable, I'm going to find a new G.I. dr. and Ass to handle the rest of my treatment. I've had it with these idiots!

Back to the Sofa

2007-03-06T09:10:00.000-05:00

Outside temperature: 17 degrees F. with windchill making it feel like 6 degrees F.

Inside the house temperature: 70 degrees

My temperature: 99.1 F., 1/2 a degree above normal. Perhaps my body is finally fighting the lingering ear infection and cough.

March 1 lab test results: WBC and ANC dropping below the US "too low" point, despite weekly injections of Neupogen, now increased to twice a week, effective yesterday. Hgb dropping from 16 on Feb. 15th, still not below what passes for normal here, but I could feel the drop happening and had to resist the temptation to put myself back on Procrit last Friday, and instead waited for my physician's ass to tell me to give myself another injection yesterday. PCR results still not back. I'll call back for them on Thursday or Friday. Or next Monday - why risk possibly ruining the weekend?

Blood pressure yesterday: 148/80. "Oh," I told the Ass, "I haven't taken my HCTZ today, I don't do that till 3 hours after I take my Ribas, don't want to wash them out of my system." "Good plan," he says - "why is your pulse up to 102?"

I resist the temptation to tell him that being so close to him makes my heart race, then the urge to say I just took a dose of crystal meth, which I got from my Homies down in the Hood. (The man has no sense of humor.) "I don't know why my pulse is up to 102," I say, "oh wait - I took a dose of OTC cough medicine, could that be the reason?" Good enough for him, he asks me the brand and dose and writes this down in my chart.

Today, interferon injection #22 is now finding its way from stomach fat to blood system (should be easy this time - this one drew blood) to liver. I woke up at 5:30, ate breakfast and took ribas at 6:00, did the deed at 9:00. Getting earlier and earlier with this each week, in my rush to get it over with, also I don't get side effects from it the day of the injection, so why not do it early? Three round little Bandaid Spots now on my abdomen, one for each injection done during the past 2 days.

On the day I do my final injection, I'll probably get up at 4AM, eat breakfast at 4:30 and do the injection at 7:30.

So, with the low whites and the possible germy people at work, it's back to the sofa, where I spent most of November and December. It is a nice sofa, relatively new, only 4 1/2 years old, fairly comfortable, a putty colored micro-suede...and I hate it! It is a sectional sofa with a chaise lounge section, (my place) and a 3-cushion sofa that fits next to it. There are two seat cushions between my chaise and the end where my husband sits, and he has an ottoman at his end.

I have already watched 3 hours of local news, Good Morning America and the Today Show and have a daily newspaper to read, if I want to be even more informed. I WILL NOT watch Regis and Kelly and I will not watch The View. Actually, I want to read the comics, so I will read the paper later. I just turned the TV off, well not off, but to some light classical music, and I started reading a new book last night, which I'll resume after I check my work email and make a few phone calls. The book is called "Family Tree" by Barbara Delinsky. At best, it's Chick Lit, but it's only the second book I've attempted to read in almost 5 months, and I don't think I could handle "War and Peace" right now. To get to this book, I had to abandon "Nature Girl" by Carl Hiaasen, after finally deciding at page 206 that Mr. Hiassen hit his fiction high point with "Skinny Dip," in 2005 and is now becoming a hack. I am going to log onto Mr. Hiassen's website later and tell him this.

My head is clearing after the past weekend's "Wow did that ever come out of left field Riba Rage incident." Yesterday it felt like it was stuffed with feathers.

Snow is expected tomorrow, so I probably will not go to work then and I'll aim for going in on Thursday.

I dropped a riba pill yesterday when I was filling up my pill organizer. I spent 10 minutes looking for it on my hands and knees and actually lying down and shining a flash light under the bureau, the bed and a desk. It should be visible, it's pink and the bedroom carpet is green. I counted the pills left in the bottle and they total 61, there are 28 in the pill organizer and 2 in my purse, in case I get caught away from home when it's time to take them. There is definitely one missing...maybe there are 3 in one compartment of the pill organizer? I'm not going to worry about this...well maybe I should - my dog has enough sense to not eat pills found on the floor, but the grandchildren...just because I can't find this now, doesn't mean it won't surface later. First place to look: pill organizer, then grab another flashlight and back on the floor.

I guess I really do want to find it, so I can say I took every pill I had to take. Final pill taking day: March 29th.

(c) 2007 uncertain4sure LLC

The Next Time I Get The Urge to Hug Someone...

2007-03-03T07:42:00.000-05:00

I went into work last Friday, not yesterday, the Friday before, to help a new employee, who started work the day I was diagnosed with pneumonia and was getting confused with no direct supervision or guidance, about what to do...to the point that I was afraid she'd quit.

While I was there, a co-worker, whom I hadn't seen for several months came over to say goodbye to me and some other people. He announced that he was retiring, effective March 1, he had had enough of company bull shit and politics. He looked, for lack of a better word, like crap: thinner than a rail, stressed out beyond belief. While he was there, I got him to sign some forms that needed signing, but I hadn't really worked with him all that much in the past 5 years, but had worked closely with him for the first 12 that he had been with the company, so he was really there to see the woman who had taken over my old job.

When he left my office, I had the sudden urge to hug him, which I resisted, as we didn't have that type of relationship and I am not a hugger. He also had a bit of a history as a sexist at the job he held before he started working at my company, which he told me about the first time we met, and had left that job to avoid being charged with sexual harassment. I told him when we met: don't touch me, don't use the F word, don't use the C word, don't call me a bitch, and don't call other women bitches all that often, and we'll be fine...and we were.

Wednesday was his last day at work.

On Thursday, he blew his brains out with an antique firearm in his basement.

I found this out yesterday. After talking with the woman who took over my old job
and had worked closely with him for the past 5 years, she told me that he had told her that Retirement=Suicide. I don't know if he had told anyone else that, but if he did, obviously no one had believed him.

He had a wife and two adult children, who were married and successful. But, obviously he saw his job as his life.

I said goodbye to him last Friday, thinking I'd never see him again, but just because that's the way it is with people who leave or retire, especially those who leave bitter: they don't come back to visit.

But I wish I would have hugged him last Friday.

March the Worst...

2007-03-01T10:12:00.000-05:00

...27 more days (at most) counting today, being optimistic, and not letting fear and loathing take hold of me: it ain't getting any worse than this. Well they ain't getting any worse on the HCV front, that is.

Now, on the marriage front...things are not getting better, they are getting worse. The simple plan of having a nice civil breakup, but continuing to live together for another six or seven or eight months is becoming more and more ridiculous and impossible.

On Sunday, I asked my son to check his work schedule for October, then made reservations for a two-bedroom condo at the beach for me, him, and his two children. I didn't even ask my husband if he wanted to go, or what dates in October were good for him, just assumed that he would be out of my life by then.

After our son left, my husband announced that if he is still here in October, he's going with us, it will nice to spend a week with the grandchildren before he leaves forever. I really don't want him to go with us, having him around changes the tension level of any vacation and makes it more like work. Well, we'll have the "I paid for the place and you're not going with us" discussion in the Fall.

We are barely speaking to each other.

But, what I hate and resent the most...what I hate and resent the most...I'll have to think about that for a while...almost 33 years...so many outrages from which to choose.

A high ranking outrage, but I'm not sure it's going to rank #1: his memory vs. mine - he forgets every act of mental cruelty he committed, I remember then all.

Blackjack

2007-02-26T19:58:00.000-05:00

Not sure if I'm going to have time to write something tomorrow (with my Hgb at 16 on Feb. 15 and no need for Procrit since a few days before that, I have tons of energy, and now that the pneumonia is just about gone, and the ear is no longer deaf, I'm back to working 1/2 days, as I was in January) about injection #21 - Blackjack.

It's not really my game - the odds are in the house's favor, but it will mark the 7/8 point, and my last injection in February.

Getting back to the quantitative PCR decision - I am going to have this done on Thursday, along with my usual bi-weekly CBC. If any viri stragglers have returned, I want another 12 weeks to kill them, or 24 weeks, if needed.

I'd rather do 36 weeks or 48 weeks now, than 24 weeks now...then another 48 later!

So, that's the plan...unless I flip-flop again.

Going to get to the lab early enough Thursday afternoon, so I can throw a riba tantrum if they can't understand my Physician's Ass's coding on the lab slip. Getting an initial viral load before I started treatment required 3 attempts (holes punched in my arm), getting my 8 week PCR only required one attempt...but 3 visits, before the receptionist took pity on me and figured out what the doctor wanted.

So...beginning, middle, end.
I think tomorrow's injection will mark the end of the middle, and the beginning of the end. Based on the results of the PCR, of course.

I'm In A Good Place

2007-02-25T08:19:00.000-05:00

...for the place I'm in.

Nothing hurts today, except for the things that usually hurt - the small joints in my fingers and toes, some of the larger ones in my knees.

I'm not having any psychological side effects right now, except for the ability to read minds and predict the future, and I promise I'll use this for good, not evil.

At this point, I think I could even do 48 weeks of treatment, if I had too, but I'm not going for another PCR until I'm done treatment, because I don't want to, so perhaps I'm having a minor delusion about feeling I could do 48 weeks, brought on by the knowledge that I only have to do another 4 weeks.

Well, aches and pains (which I've been told is a good sign that I'm going to reach SVR), mind reading, predicting the future, and minor delusions...I can live with these!

If people (vs. machines) actually picked the winning lottery numbers, perhaps I could even get rich!

I've Said Enough

2007-02-21T09:50:00.000-05:00

...on the hepatitis forum.

Last night, while looking for something someone else said a few days ago, I noticed there was a way to search on who had the highest number of posts...and I was shocked to find that I currently rank #7. That's more than everyone except Ross, Carol, Martin, John, Chrissy...and I forget who the other person was...Minerva, I think. That's more than Ron.

But, I'm now getting afraid that new people going there may think "hmmm...this person has posted a lot, she must know a lot," when nothing could be further from the truth. I know nothing, except my own experiences.

Approximately 1/2 (600) of my almost 1,200 posts were me expressing my fear of sticking needles into my abdomen and treatment, thinking of ways to avoid starting treatment (I thought becoming a Christian Scientist was brilliant, no one else did.), even dreaming up ways to weasel out of treatment while I was four months into treatment.

I posted about 400 jokes, one-line responses to other people's comments, (that I thought were funny at the time, but were sometimes snide and cruel) and pranks and diversions (wedding, husband, children, etc.) to avoid thinking about starting treatment. I posted more about my life than most people wanted to know.

Perhaps I asked about 50 intelligent questions and definitely asked about 50 dumb ones. Perhaps I said hello to about 50 new people...until the physical side effects of my own treatment made it difficult for me to want to make new friends.

I picked fights with just about everyone there at one time or another and apologized to most of those people. If there's anyone else I owe an apology to: here it is - I'm sorry.

I don't know what the rest of what I posted consisted of. (The numbers above are just ballpark figures, I didn't actually count.) If I helped one person through anything, maybe that was my purpose there.

Right now I'm very demoralized about the events of the last 3 days, and I don't have anything positive to say there...so unless and until my attitude changes, I'm going to try to not say anything. Yesterday there was one thing I could say there about something I had personal experience with (Procrit takes 2 - 3 weeks to start working.), so I said it.

I'm going to concentrate on getting through the last month of my treatment, staying in contact with the good friends I have made there and here...and keeping my mouth shut about things I know little or nothing about.

I'll keep on blogging, when the urge hits, and again, when I have something worth saying.

Hasta la vista, baby - I'll be back!

(c) 2007 uncertain4sure LLC

Fat Tuesday

2007-02-20T08:33:00.000-05:00

An hour and a half until injection #20, only because someone once told me to wait 3 hours between Ribas and injection, then I rip that box to shreds and there's only one box left. I'll do my last injection, #24, exactly one month from today.

Back on antibiotics after the ENT gave me 3 choices yesterday regarding my still deaf, but not quite as deaf, left ear: 1) watch and wait; 2) put a tube in it; or 3) another round of antibiotics. Gee, Let's Make a Deal: I choose Door Number 3, Monty!

My blog is turning into crap (I haven't had a single moment of creativity in weeks), my body is crapping out, my White Blood Cells are crapping out (which is why I chose Door Number 3), my Neupogen is not working as good as it did when I first started taking it in November, even my Acidiphillus is (literally) crapping out and not working as well as it had been.

After today's injection: 4 more interferon injections, an unknown number of Neupogen and Procrit injections. Then a week of pills.

"Laissez les bon temps rollez!" (Apologies to anyone who actually speaks and writes French - Let the Good Times Roll!)

A Pain-free day

2007-02-18T18:22:00.000-05:00

A trip to the store to buy some new sheets and a blanket.

A waste of a free "on demand" movie - Miami Vice, don't even waste a free movie coupon on it.

And then my husband finally acknowledged the puddle on the bathroom floor that I pointed out to him a week ago, and determined there was a leak.

I am not a plummer. He is not a plummer. A lot of shouting and screaming ensued in a small bathroom. I could do little but mop things up. As it turned out he had a kit to replace the broken mechanism in the toilet. I only have to get one more part from Home Depot tomorrow. Braided stainless something or other.

My ears don't like shouting in small rooms. My ears don't like shouting.

I guess it could have been worse - the leak could have been acknowledged on an achey day.

So, this would be Feb. 18; therefore 10 more days in February, 27 days in March, then I'm done. Forever. Never doing this again. Hannibal Lechter can eat my liver, but I'm never doing this again.

It's Not Enough

2007-02-15T09:51:00.000-05:00

From the World's Cheesiest Valentine's Day Card;

Hallmark wrote - "There's a Time and a Place for love...Any Time Any Place! Happy Valentine's Day!"

My husband wrote:

"Un -
I do love you very much in my own way as I'm sure you love me in your own way. We need to accept that way of love if we are to be happy with each other. All my love, Certain"

I say: No, it's not enough, I don't have to settle for this. I want more out of life and love. We're not happy now, I'm not going to accept this, and we're not going to be happy with each other.

Tearing up the card right now...keeping the chocolate.

...Well, at least Valentine's Day is over, now maybe I can find some Cadbury eggs and Peeps!

Invisible

2007-02-11T16:25:00.000-05:00

I had 3 inches of dead and decaying hair cut off the bottom of my hair on Friday and the husband didn't notice. Didn't expect him to.

Then my son didn't notice today, neither did my 2 year old grand child, so guess she's not "exceptional." (They say that exceptional 2-year olds will notice a hair cut on someone.)

Then my daughter didn't notice later, neither did my son-in-law.

I am an invisible middle aged woman and no one would notice it if I cut my nose off, let alone a minor hair cut that took my hair from shoulder length to chin length.

The adult children still haven't noticed I've been sick since October...and with 6 weeks left, it's almost become a game to keep them from finding out!

They call me at work, my voice mail message says I'm out on extended sick leave, they call me at home and make their various demands, not once asking why I'm out on extended sick leave.

Well, they do know about the pneumonia and the ear problem...and they did know about the anemia, one because she was here the night I had a very loud fight over the phone with my drug insurance company about them not authorizing Procrit right away, the other because I used my handicapped parking pass with him once.

But how long do they think anemia, pneumonia, and ear infections go on? How long will they believe my answer to why I'm anemic, "Because my hemoglobin is low and I'm not producing enough red blood cells," without wondering why the Hgb is low...etc?

Are they dumb or just insensitive? Or maybe a little of each...

It's Official - I'm Now Bored

2007-02-07T14:52:00.000-05:00

Guess I must be feeling better, except for the almost total deafness in the left ear, I'm now bored to death at the prospect of sitting home another 6 or 7 (still don't know the answer to the "do I stop with an injection or do I have to take another week of pills question") weeks...

Saw a new ENT yesterday, well he's not new as in "fresh out of medical school," just a new doctor for me - with all the "ologists" in my life, would you believe I didn't have an ENTologist? Anyway, he put on gloves to look in my ear after we discussed my HCV treatment and a visiting doctor from Ethiopia got this horrified look on his face. A brief one-sided discussion (by me) regarding safe patients and safe practices ensued...then I realized I wasn't exactly winning friends and influencing people by explaining to two doctors the way HCV is transmitted...then I said to myself, "screw it - put your hand condom on if it makes you feel better."

Yes, the left eardrum is definitely swollen, something my GI doctor told me on Monday, well, time for a hearing test. I let them both lead me down the hall to the audiology booth. Good Uncertain held Bad Uncertain in check and allowed an 85-year old woman (with dual hearing aids) to get ahead of us...and this caused a 1/2 hour wait for the test. Yes, I've definitely lost some hearing in the left ear.

Diagnosis - never heard it, the old ENT, as in 67 at least, was more interested in facing the visiting Ethiopian than me while speaking, so I couldn't see his lips.

Treatment - 6 days of decreasing amounts of Prednisone, supposedly emailed by the old ENT to my pharmacy - when my regular doctor does this, the prescription is usually filled when I arrive 20 minutes later. When the old ENT did it, it didn't arrive, and I stomped out of the pharmacy angry, after insisting on paying for my orange juice and cookies at the pharmacy counter and not wanting to get into another line.

Got home at 4:35, called the old ENT's office...and the office closed at 4:30. Called the after hours number, got into an argument with the answering service person about me supposedly speaking faster than 70 words per minute, and her only being able to type 70 words per minute - I know I don't talk that fast! Anyway, the message must have been conveyed to the old ENT...and the RX arrived at the pharmacy at 5:11, but I didn't pick it up till today.

And, that's supposed to heal the deaf (and possibly raise the dead). But I have to go back on the 20th...and if it's not cured by then, I may need to have a tube put in my ear...which believe it or not, will not be the first time I've had a tube put in that ear.

So, anyway, now I'm on Prednisone and I'm bored.

Ventured into my work email account and the same boss I spoke with Monday afternoon, who didn't me to do any work from home, was suddenly asking me all these questions about my active projects. So I wrote him back: "look, how much time a day am I going to be expected to answer questions, if I'm on leave?" And I think he's going to be reasonable and do things my way, box up all my open files and bring them to me tomorrow.

So, maybe this will be my last day of being completely bored...And maybe I won't have to use up all of the sick days I've been saving for 20 1/2 years to get through this.

Doing Better - At Least On Paper

2007-02-05T11:19:00.000-05:00

Just got my last blood test results and everything is back in the normal range, except for MCV and MCH (don't know what they are, but they're not terribly out of range).

Don't know how this can happen while a person is recovering from pneumonia, except for the Neupogen and Procrit "rescue" drugs I swear by.

The pneumonia is still there - and even an untrained person like me can spot it on the x-ray - and now my left ear has gone totally deaf and I have to see an ENT dr. tomorrow, but I'm not being dose reduced or taken off treatment, so I think I skated on this patch of ice, and maybe my luck will hold out another 7 weeks.

Hard Right Turn

2007-01-30T09:40:00.000-05:00

"In a dream, I'm riding the Philadelphia subway, but it is one of those old subway cars with cane seats and overhead straps, that haven't been around since about 1960. The doors of my car have just closed at the Independence Hall (5th and Market) stop, and now there is just one more underground stop at Second Street, then there will be a slow, gentle, screeching turn to the left, and the subway will climb above ground and become an elevated train...and then I WILL see the light, there WILL be light, and the rest of my trip towards my childhood home beyond the northernmost Bridge-Pratt stop will be above ground and in the light.

Holding on to the overhead strap on the subway, almost asleep, (you have to grow up riding the subways in a large city to be able to sleep standing up while riding) for once not worried about some pervert grabbing my ass...the subway makes an unexpected hard right turn, and I lose my hold on the strap and go flying through the air and crashing into the floor."

What was the crash?

Pneumonia - is it viral, is it bacterial? - must drag myself out of a heated 70 degree house into a 19 degree world and go have an x-ray today, so my doctor can tell the difference. Don't know if I can do it. He gave me an antibiotic, and there's no treatment for it anyway, if it's viral.

Anyway, the doctor saw no reason why I couldn't do injection #17 today, but he's just the PCP, not the G.I. dr. or the Ass, who's always listening to my chest, worrying about secretions. But I don't see him till Monday, so I will get injection 17 done in a few hours.

This must be why I couldn't see the light last week, I subconsciously knew there was going to be an unexpected turn and crash blocking it.

Where's the Light At The End?

2007-01-24T19:59:00.000-05:00

How come some people can see this 10 or 11 weeks out and I can't see it yet and I'm closer to it? Is it because I'm still considering chickening out, stopping after the next time I see the Ass on Feb. 5th, or reducing the Pegasys dose? What's that going to do for me? Nothing, except devalue the 16 weeks I've already been through.

I think this is where the people who have an AA/NA background have an advantage - they know how to take this one day at a time. I'm looking at the end, trying to see past the days in between today and then.

Why Do I Bother...

2007-01-22T10:41:00.000-05:00

...dragging myself to work,

1) when I feel like crap, when the people I work with call out sick with imaginary colds and fake chest pains, whenever there happens to be an inch of snow on the ground?

2) when my boss barely says hello to me in the morning, in his hurry to go have coffee with his boss and his boss's boss, and suck up to them? When he barely acknowledges my existence, unless he wants me to do something yesterday? Where, when I felt myself getting sicker in late October, I asked him if I could explain what I do to him and everyone else in the unit, so someone could do my work (just in case) and he could never find the time to listen to me explain what I do, so nothing got done in the 7 weeks I was gone, and now I'm so overwhelmed I just move papers from one stack to another and nothing still gets done?

3) when I could get in so much trouble for blogging and surfing the net at work, but would be in no trouble at all for staying home for the next 2 months and doing nothing and getting paid for it?

Am I an idiot, or what?

Ironic

2007-01-18T19:46:00.000-05:00

This time last year, when I went to see my thyroid doctor, my main concern was thinning hair and I was talking about getting hair plugs.

That was back in the good old days, when my old G.I. dr. had me convinced that I was one of those lucky 15 - 20% of people with HCV antibodies who cleared the disease themselves and I would never have any problems with it. Ironic, ain't it, the difference a year makes.

A few weeks after the visit to the thyroid doc., the G.I. dr. did another viral load test on me and suddenly realized I wasn't as undetectable as he once thought I was, and so began my uncertain journey...

Today, when I saw my thyroid doc. with my TSH up to 5.51 (meaning it's getting too low), I told him I had HCV and was currently in treatment, and my main concern was my liver (and saving my thinning hair...then world peace...and the kids...in that order).

The doctor quickly calculated that I needed another 88 MCG of Synthroid in my life per week, to bring the TSH down and my thyroid up. How to do this? I told him that if he wrote me a new RX for Synthroid, I could only get 30 days worth the first time from my cheap-ass drug insurance company, then they'd allow 90-day refills. He did the math in his head (75 X 7) + 88 = ...never did tell me the answer, then got me some 88 MCG Synthroid samples and told me to take my usual 75 MCG/day + 1/2 of an 88 MCG tablet every Friday and Monday.

I thought this was simply amazing, that he could do this equation in his head, and he told me he used to calculate Mickey Mantle's batting average in his head, after each time Mickey Mantle batted...which led to a conversation about Mickey Mantle's liver, and what was the real deal was regarding Mantle: was it alcohol or hepatitis? The medical community is unsure of the verdict - the man did drink a bit, but it could have been hepatitis...or a little of each that killed his liver.

Afterwards, I went to the very nice mall near his office, 30 miles from my house, and tried to find my ususal Maple Sugar lipstick at the cosmetic counter. This was the second time and 2nd mall I've been to in 3 weeks looking for Maple Sugar. I don't think Estee Lauder makes it anymore. The woman at the counter looked for it, and then simply said, "sorry, we don't have any." I thought this was a very lousy thing for a sales woman to say to a customer. I thought cosmetic saleswomen at department stores worked on commission and should have suggested something else.

So, I asked her if she could suggest an alternative color. "Well, let's see," she said....dragged out 3 different shades that brought out the 3 Bears in Me: too coraly, too pinky, too bricky.

Finally, I pulled one off the sample rack myself, rubbed some on my hand, grabbed a Q-tip and put some on my mouth, decided it was close enough to Maple Sugar for government work, and asked for 2 tubes, so I could spend more than $35.00 and get the Estee Lauder free gift: a purse I'll never use, another lipstick that is too bricky, some assorted creams I'll never use and a mascarra that had better be black.

She experienced great difficulty charging my credit card. It simply would not work.

"Is this your first day working here?" I asked her. "I don't work here," she replied, "I work for Estee Lauder. I just travel from one store to another for the free gift promotions when the stores need extra help."

"Oh that explains it," I thought, neither she and the woman at the other mall 3 weeks ago were working on commission. Finally she realized that she was sending my credit card information to the OTHER side of the counter and I had to walk completely around the counter to press YES on that machine, then sign my name.

The name of the shade I bought: Ironic!

It's true, trust me, I'm not that creative! Check it out yourself at your local Estee Lauder counter if you don't believe me.

(c) 2007 uncertain4sure LLC

Blindsided Bad UC!

2007-01-16T14:50:00.000-05:00

I had her convinced we were moving our injection day to Wednesday, I actually had myself convinced we were moving our injection day to Wednesday. At 2:30 PM, an hour and a half after the usual injection time, I woke up, the voice of the man who killed John Lennon said "Do it, do it, do it," then both of the 2 Pegasys syringes left in the third to last box started screaming "pick me, choose me, use me today."

I sprang into action, quickly put the dog out in the yard, opened the third to the last box and said to the two syringes in it: "You are both equally deserving of use today, this is just a random choice, whichever one of you doesn't get used this week will get used next week, I promise."

Grabbed one, put it on the kitchen counter on a paper towel, ran to the mirror in the bathroom to see if there was any spot left on my stomach that hadn't been used twice already, thought I spotted a white patch an inch or so below the navel (or naval, whichever one doesn't mean Navy-like, but means belly-button), ran back to the kitchen, put the needle on the syringe, pushed the air out, cleaned the area with the alcohol swab, did it, did it, did it!

For the first time ever in 15 injections, I felt pain when the needle went in. For only the second time ever, I must have hit a cappilary, a speck of blood appeared when I pulled the needle out. Dam it, dam it, dam it! Well, the other time this happened, I got my usual side effects afterwards, have to hope that happens again and the medicine gets to the right place (guess that would be the liver...duh) and does its job.

Held the alcohol swab on the injection site for a few seconds, by then the dog was scratching to come back in the house. Let her in, and Bad UC came in with her. "Huh? What just happened here? What did I miss?"

"Nothing, let's take some Tylenol and watch Ellen DeGeneres."

She never even saw it coming!

(c) 2007 uncertain4sure LLC

Agoraphobia (sp?) fear of wide open spaces

2007-01-15T14:02:00.000-05:00

With 20-20 hindsight, I probably wasn't ready for a solo trip to Walmart, after two months of living in my little controlled environment - my house, my family, my little strip shopping center with my grocery store, pharmacy, dollar store - what more does a person need?

Well, I needed bras, which aren't sold there. I've been wearing the same Hanes brand and style for about 20 years, these have been getting harder and harder to find, last year I found them at Walmart, so today, I knew I couldn't handle the Measuring Nazi at Victoria's Secret, so I ventured out to Walmart to get the exact style and size I always wear.

I don't remember the ladies lingerie department as being so huge in Walmart...but I managed to stay focused and look for "Hanes" signs at the top of racks, and finally zeroed in on the rack with the bra I wanted. I found two in my size, then looked around for Hanes bikinis - way to many choices, disorganized styles (briefs mixed with high-cut briefs, mixed with thongs), couldn't find my size. Danger Will Robinson!

I shifted my badly performing shopping cart to the childrens' department, hoping to find one of those wrist leash thingies that my son could use with my granddaughter. The childrens' department is also bigger than I remembered it, but I found a sales clerk, asked her if they stocked wrist leash thingies, and she took me to the one childrens' harness they had in stock, a modified dog harness. Didn't get it.

At that point, I heard someone's cell phone playing my ring tone, reached into my coat pocket to answer it, and it wasn't there...and I realized I left it charging in my car on the front seat.

I grabbed the two bras from the shopping cart, abandoned the cart in the childrens' department, and headed to the cash register. There is a long line at check-out and I pick up another cart to lean on. The "12 items and under" line isn't moving and I jump to another line that was moving - before I got in it - then notice that a person ahead of me is buying two of every junk food item Walmart stocks, and I see the person who was behind me in the "12 items and under" line leave before I make it to the register. The cashier swipes my two items, then wants me to swipe my credit card, but there is a fat woman standing at the credit card swipe place, and she is not moving. I reach around her to swipe my card, but the magnetic strip goes in the wrong way. The cashier tells me I did it wrong. I say, "well, if this woman who just paid could move, maybe I could do it the right way," then the woman turns and tells me she is waiting for her son to pick up all of her bags - did I have a problem with that?

I realize she could probably kill me just by sitting on me, and keep my mouth shut. I DO STARE HER DOWN!!! She turns her head away from me first, so I count that as a win, declare victory and high tail it out of there.

Back to my friendly neighborhood strip shopping center, just like Cheers, where everyone knows my name, and the photo clerk at Rite Aid prints the one photo I want from my CD in about 5 minutes.

But not before I have an ugly incident with the blood pressure machine in the pharmacy waiting area. I put my forearm in the blood pressure cuff - three times - and get an error reading 3 times in a row. Finally I reach down and unplug the machine, forgetting that everything that happens at Rite Aid gets video-taped by Rite Aid. They'll probably be able to figure out who unplugged the blood pressure machine by tracing my movements around the store from photo counter, where I wrote my name on an envelope, to pharmacy waiting area back to photo counter, and they'll probably be coming for me very soon.

Must remember to ask - "Officer, exactly what is the name of the crime that occurs when a person unplugs a blood pressure machine?" actually, I should probably not say anything other than I want a lawyer, I know my rights!!!

(c) 2007 uncertain4sure LLC

3 Months In

2007-01-12T19:28:00.000-05:00

Missed the "I'm just as far in as I'll ever be out" point and am now more than half way through this tunnel. Still can't see the light at the end, tho'.

But first, must readjust the injection schedule again, as Fridays are becoming unbearably painful and it's too hard to work. Today I was supposed to be working from home, but couldn't. I'll get the work done tomorrow or Sunday and no one will ever know. So moving injection day back by one day will now have me doing my last injection on Wednesday March 21, not on the 20th - and the 21st is the first day of Spring, seems appropriate to end the virus killing as life is reborn elsewhere. I don't care about whether I have to take a week's worth of pills after the last injection. Well, I do care, I really don't like the evening Ribas, which make me feel like something is crawling through the veins in my arms, but I can do those, knowing that will be the end of this.

No time left to get depressed. Literally, it would take too long to call the 800 number I need to call to get pre-authorized to see shrink, get some names and numbers, call them, make an appointment, see the person, explain my entire life in 45 minutes, start anti-Ds, have them work...there is no time for this.

Must continue to stick my head in the sand regarding things around me spinning out of control, and I'll think about them in the Spring, after all the Spring is another season (apologies to Margaret Mitchell).

Must focus on directing my crankiness appropriately, and there are many appropriate targets -

1)to the receptionist at my old dentist's office, who never sent my X-rays to my new dentist, who never called me and told me I needed to sign a release before she could do that, who faxed me the release without the dentist's return fax number on it, which required another cranky phone call to her to get that.

2) to the roofing company that dropped nails into the intake for the radon pump and now refuses to pay for the replacement - $350. Must find out how to sue them in small claims court and start this process. Must report them to the home improvement commission, file a complaint. May start another blog entitled "Turner Roofing Company Sucks," so if they have a website (must check this out), a link to my blog will be displayed on the same search engine results page as their website. (Warning to Turner Roofing Company - Do Not Start With Me - You Will Not Win.)

3) to the state tax assessor, who assessed the value of my house at double what I paid for it in 2002. Must start the appeal process for this by Feb. 15th. Today I saw an ad in the local paper from the real estate agent who sold us this house, saying that "many houses he sold in the past few years were reassessed at ridiculously high rates, and he will help all of his clients appeal the new assessments." Must fax him a copy of the assessment notice and a cover letter Monday.

So much to do, so little time left to do it while on treatment and working half-days. Must get started. Monday.

(c) 2007 uncertain4sure LLC

Geese Spotted Flying South

2007-01-11T19:57:00.000-05:00

Saw huge flocks of Canadian geese flying south today, massive formations, every one of them determined to get out of Dodge or else...
Winter must be coming finally. It must be the water temperature that finally signals them it's time to go. I drove past this pond I pass every day and it's been full of geese since October and all "winter," but today there were just a few stragglers left - probably the sick and elderly.
How many times do they do this? How many years does a wild goose live, if the vice-president doesn't shoot it down? Maybe the ones who are still here just said to themselves this year "I am too old for this shit, I'm just going to stay put this year."
Why does the 12-volt electric ice-scrapper I bought not work? Why does the sun not rise (on days when it's sunny) high enough above my neighbor's house to defrost the frost on my car windshield before 9:AM?
Well, maybe now at least the wasp's in the nest in my Juniper bush will die and I won't have to worry about them again until the Spring, just two months and 10 days away.
I can do two months and 10 days of winter. Maybe it will snow once or twice, maybe it will be a nice, pretty snow - 3 or 4 inches deep, nothing like what they got in Denver or that city in New York, what's it called - starts with a B, near Niagra Falls???? It's the name of an animal, I can picture the animal, it's on the nickle, what's it called??? Crap - this is this is one of the worst senior moments I've ever had!
Bet geese never get brain fog.

You Lost This Round "Bad Uncertain"

2007-01-09T14:31:00.000-05:00

So shut up, it's over for another week, against your advice, I just did injection #14, so shut up about it already, I'm sick of hearing you whisper:

"You know you had a very low viral load - you probably killed all the virus with your first injection," and

"You know that other type 2 person from the Forum who only did 12 weeks of treatment - well she just posted her 6-month post-treatment results and she's clear, so you probably don't need to do this anymore." (For the record, Bad Uncertain, she was 2B, we are 2A/2C, what our Physician's Ass calls a "hybrid." Sounds like what happens when a horse mates with a donkey.) And -

"Your body can't take much more of this." The hell it can! Some people would kill for a 140/90 blood pressure reading.

"You were clear at 8 weeks, you were an early responder, you probably were a Super Responder." But, we'll never know that for sure, will we, because we didn't have a 4-week test, because we didn't want to know that then, and didn't want to have this argument every week. So why are we having this argument every week?

"OK, Good Uncertain, you won this round, but you do have that new lab slip from the Ass for a new PCR on the 18th, if you're still clear then, I'll be back. There is probably some poor person without decent insurance who could use those two boxes of Pegasys and the bottle of Riba more than you can."

Great, leave me alone until then, actually leave me alone until I see the Ass on Feb. 5th, I'm not going to call him for the Jan. 18th results - well maybe just the Hgb and ANC numbers, and you know he's not going to call us unless we call him first.

(c) 2007 uncertain4sure LLC

NFL Wild Card Weekend

2007-01-08T07:30:00.000-05:00

The Indianapolis Colts beat Kansas City Chiefs, whose defense fell apart, meaning the Baltimore Ravens now have to play the Colts next weekend. (The Ravens had the weekend off, due to their being the second highest ratest team in the NFL, or at least maybe in their division or conference or something.)

Anyway, what a grudge match this is going to be. Some "ancient history" - the Indianapolis Colts used to be the Baltimore Colts, until their owner in the 1980's - Bob Irsay - suddenly moved the team to Indianapolis, literally in the middle of the night, in Mayflower Moving Company moving vans. (The Mayflower Moving Company no longer does business in Baltimore.) It took Baltimore many years to get another NFL team, during a time of major league expansion, thanks to the head of the NFL at the time - a Mr. Paul Taglia-boo! as he's called in Baltimore, not wanting this city to have one.

Finally, about 10 years ago, Baltimore went out and purchased the Cleveland Browns and they became the Ravens. The NFL quickly let another team move to Cleveland. They didn't have to wait more than 10 years like Baltimore did.

Check out:

http://www.baltimoreravens.com/ to follow all the action

Other teams advancing in the Wild Card round: Seattle, Philadelphia, that's all I can think of right now.

A Random Day in Fire Season

2007-01-04T19:29:00.000-05:00

The phone rings at 5:00 a.m., never a good sign, but this time no bad news. My son has just put out his first major fire since becoming a fireman in August and there are TV news crews there. I turn on the news, and sure enough there are reporters and firetrucks, and a captain being interviewed, and four people in firemen uniforms - can't tell if any is my son - in the background.

I realize my pajamas are soaked in sweat - that's a new side effect I never had before: fever and sweating through the night. Well, that's it, I'm going to get every side effect in the book. Just because my hair hasn't fallen out half way through treatment doesn't mean it won't fall out during the second half of treatment, or even afterwards.

I make it to work by 8:30, actually have a somewhat productive 1/2 day...there is an important chart missing from my desk, I confront my boss, he admits he took it. Good, at least I'm not losing my mind.

I notice myself having trouble putting my feet where I want them to go, actually stagger into a wall a few times - must be the day before my Procrit injection.

I meet my son at my bank at 12:30, so he can cash in some U.S. savings bonds his grandmother bought him, one a year since he was born until he turned 21, and some are now matured and not earning interest, others still are, but he needs the money NOW to pay his lawyer in his custody case. I'm sure my mother-in-law never imagined these bonds would be used for something like that!

We go to lunch at a nearby deli. We both order sandwiches, then he heads over to the soup bar. He comes back with a container of something. A pretty girl next to him asks him what soup he got. Manhattan clam chowder. I say "barf," don't like clams, don't like soup in general. The girl says she got Navy Bean soup. My son sniffs instead of finding a tissue and blowing his nose. I automatically say "don't sniff." He answers "yes, Mom." I realize I just embarassed him in front of the pretty girl.

But maybe not. She says she has a cold too and talked to her Mom earlier. I look down at her hands, see no wedding or engagement rings and finally I see this for what it is - she's interested - and say "I'm getting away from both of you sick people," and go get a table. I sit down where I can see them waiting for their sandwiches, laughing and talking. I see the girl pay for her food at the cash register and leave, my son pays for ours (with my money - I said random day, not miraculous day) and brings the food to the table. "Did you get her name and number?" I ask. "No," he answers, "she was too high maintenance."

Well, she was dressed very nicely, either works at a high paying job or comes from money and probably wouldn't be intersted in dating a fireman, especially after the first date, when she sees the two child car seats in the back of his car. (My son goes out on a lot of first dates.) But she was late twenties...maybe 30...close to the tipping point regarding numbers of straight men available per unmarried straight woman. Who knows what might have been?

We eat our lunch and he tells me about the fire. It started in a basement apartment, probably the man who lived there was smoking in bed. There was no smoke detector there, and he died, probably of smoke inhalation. My son was the first one in with a charged fire hose and put out the fire single-handedly. Then he heard on his radio that there was a man reported in the basement, who hadn't come out yet...and my son reached down to the floor and felt a head.

"Crispy critter," I asked? "Oh yes, I couldn't tell if he was African American or white." The other two people living upstairs walked out the front door.

"Great," I say, "I'm so happy that you finally got to put out your first big fire. Don't call me at 5:00 a.m. anymore unless you rescue someone."

(c) 2007 uncertain4sure LLC

Remind Me Why I Went Back to Work

2007-01-03T19:41:00.000-05:00

But, before I forget, here's a picture of the Wright Brothers' first plane flying, in Kitty Hawk, NC, on Dec. 17, 1903. I was in Kitty Hawk last week and saw the museaum/memorial.

So, I went back to work, why? To deal with the stuff on two desks that's been sitting there since early November? To talk to a boss who comes in at 9:30, spends an hour drinking coffee, and yacking, and sucking up to his boss and his boss's boss, then goes to lunch for 2 hours at noon? To print 66 emails that no one bothered to even open while I was gone, containing 66 bi-weekly reports?

Why I really went back: I felt better and my dog and I were at an impasse regarding the Iraq situation - she didn't disagree with any of the suggestions I had regarding ending the war, but had none of her own. I was tired of her not accepting my ideas, but having no good ones herself.

She has no position at all on global warming! She seems to enjoy the warm 55-60 degree (very unusal at this latitude) December and January days, sitting on the deck in the sun, but when I try to remind her that she's not going to enjoy July and August in the 90's and 100's, she just turns her head away from me. Maybe she realizes that she's 9 years old, doesn't have children or grandchildren, and she's not going to have to worry about this issue much longer.

And, she still hadn't forgiven me for putting her in a kennel for the Kitty Hawk trip, so I knew the conversations between us weren't going to improve any time soon.

2007 (c) uncertain4sure LLC

1/2 Done, Gotta go back to work and can't take my dog with

2007-01-02T07:43:00.000-05:00

More than 1/2 done actually, 13/24 to my OCD blog reading friends, (You know who you are.), sorry these numbers add up to 10 or 1 + 0 = 1, but I like 1, one, rhymes with WON!

Well, gotta start pulling myself together to go back to work today, really sad I can't bring my dog, who has been my main companion for the past 7-8 weeks.

By the way, my dog now gets really upset when I start getting ready to do my injections - as soon as I take the medicine out of the fridge, she realizes this is not food either of us can eat, I think she senses or smells my stress level rising, and she starts barking, as if to say "don't do it," not realizing the greater good that's going to come out of each injection. She is much more observant than my husband and my 2 grown children regarding how this treatment is making me feel.

To decrease her stress and so I can concentrate, I now have to put her out in the backyard before I get my medicine out of the fridge, so she doesn't see what's going to happen. But, then when she comes back in after I have cleaned everything up, she still senses that something is wrong and sniffs me (she doesn't do this any other time I put her outside) and sniffs the cabinet under the bathroom sink, where I have my sharps container! Maybe it is the alcohol wipe that she smells...

I wish I could bring her to work with me, she isn't much of a talker, but that would offset my boss who talks too much.

(c) 2007 uncertain4sure LLC

Happy New Year

2006-12-31T07:39:00.000-05:00

Not here yet, but it must be 2007 somewhere by now, maybe in Fiji or New Zealand.

In this little corner of the world, New Years for a region of approximately 2 million people suddenly must be scheduled around a football game that was supposed to be played at 1:PM, but has now been changed to 4:PM due to the team clinching a spot in the playoffs (set to start next weekend), the game being picked up by national tv, and the game being important regarding the team getting a "bye" (week off) next week and home field advantage in the playoffs if it wins today, and I don't know what happens if it loses.

So, I don't know what I'm doing today, other than watching a football game from 4 to 7. If the team wins today, I'll change my blog background color to purple.

I'm now at the half-way point in my treatment, got my red blood cells under control, due to 4 weeks of Procrit, the ultimate anti-depressant in my opinion, and am going back to work part-time on Tuesday. I do think the symptoms of anemia mimic those of depression, it is sad how quick doctors are to prescribe anti-depressants to people on interferon therapy, and how difficult and expensive it is to get on Procrit. If this "rescue drug" decreases my chances of SVR, so be it. I know I'd be stopping treatment at this 12-week mark without it, which I think would decrease my chance of SVR even more.

I feel - for lack of a better word - like crap, all the time, there are no longer any good days or bad days, every joint in my body is just as likely to hurt the day before a weekly injection as it is 3 days after an injection. The nausea comes and goes, the headaches come and go, but it is all manageable with sufficient quantitites of oxygen getting to the old brain.

So, to my "daily blogging brothers and sisters," if I can manage to work, I won't be writing as much myself in 2007, but I WILL be reading what you write and leaving comments. You have all truly been my lifeline during the past two months that I was out of work, and I couldn't have come this far without you.

(c) 2006 uncertain4sure LLC

Merry, Happy Early & Sustained

2006-12-18T07:30:00.000-05:00

Well, I just looked at a calendar (but how can it be December 18th when it was 65 degrees yesterday?) and I realize I won't have much time for posting, emails, etc. during the next 2 weeks, due to the usual family/holiday madness, suddenly heightened by my son and grandchildren's court ordered holiday visitation schedule, set to start tomorrow and run (off and on) for the next 2 weeks.

So I want to wish everyone the Merriest, the Happiest, the Earliest and the Most Sustained. I'll check in when I can, and I'll be thinking of everyone here even when I'm not around.

In 2007, I'm going to try to go back to work part-time, as long as I can get my Hgb into Rocky Mountain vs. Himalaya ranges, but I'll try to check in more often than I'll be doing the rest of this year.

Peace to all!

Advice Part 2

2006-12-15T07:30:00.000-05:00

* Putting mascara on llama lashes (which are only on the left eye) is like throwing gasoline on a fire.

* The only thing predictable about treatment side effects is that they will change.

Advice from the Treatment Trenches

2006-12-12T10:12:00.000-05:00

For anyone considering treatment:

*When choosing a G.I. specialist - If you have any choice in the matter, don't just go to the first person your primary care physician recommends. Just because your doctor plays golf with the G.I. specialist, this does not make the GI doctor experienced in treating HCV.

* If a GI specialist you are considering has a website, go to it, read everything, if it doesn't say that "Dr. So-and-so has an interest in treating HCV," keep looking and find someone who does mention that on their website.

* Look for a GI specialist who graduated from medical school no earlier than 1993. Since HCV was first identified in 1992, these doctors have seen and treated cases of it since their last year of medical school, during their internships and residencies. In the US, these doctors would be no older than about 40 - 42 by now.

* Think outside the box - just because you live in a middle class neighborhood, don't limit your doctor search to the same middle class neighborhood. If you are a US veteran, consider going to the Veteran's Administration for treatment, as you most likely were infected while you were in the military, especially if you were in Vietnam or the Gulf War. The VA has an excellent website and calls itself "the largest provider of HCV treatment in the US." They use electronc records, which means that if you develop a rash while on treatment and your GI doctor sends you to a VA dermatologist, the dermatologist will have instant electronic access to all of your GI history and you won't have to tell your story over and over.

That's all for now, I'll add a Part 2 when I have more to add.

More to Add - this has nothing to do with how to pick a good HCV specialist, but, I just did injection #10 about an hour ago, then 20 minutes ago my son called and told me his attorney managed to get him an emergency child custody hearing for Thursday, and now I have to go help him clean his apartment on Thursday, so he can take pictures of it and show the custody judge.

The third day after my injections is really not a good day for me usually. Guess I'll load up on tylenol and coffee. This is not the final child custody hearing, just a holiday petition, of which there are plenty this time of year, so he can spend some time with his children during the holidays. Since my grandson was born in June, he has not spent a night with my son and my granddaughter used to be able to spend the night with my son, but not since June.

What the childrens' mother is doing is clearly illegal, without a child custody order, but she thinks she's going to win full custody and really doesn't want either child getting to know my son any better, she just wants money from him. I could go on...but I won't right now.

Suffice it to say that if you're a betting person and you're trying to decide whether to bet on Pegasys or bet on Mom being fit to clean on Thursday, the smart money is on Mom.

Big Day Out

2006-12-11T07:26:00.000-05:00

The husband and I drove to our daughter and son-in-law's new house yesterday. Just one state to the north, but it was like going back in time as far as the condition of the roads there. Two-lane black top most of the way, as soon as you cross the state border. There is one little town there that must get most of its yearly revenue from speed traps and red light infractions.

I realized for the first time that I am truly living in suburbia, on land that was farm land until the 1980's, then developed with zoning plans regarding where you could put houses, shopping malls, factories, etc. The places we drove through in the other state started out as farm land and small towns, that went back to the 1800's at least, but have now blended together in a massive urban sprawl - you can hardly tell where one town ends and the next one begins. A 40 mile drive took an hour, on a Sunday with no traffic. Our daughter still commutes to her job in this state, where they used to live, and allows an hour and a half each way.

Their house is cute, the first one finished and occupied in a planned development of 45 houses, each on 1/2 acre. They got it at a great price, being the first ones to buy, and my son-in-laws' connections with the builder also helped. He actually works for the builder, so he got to build his own house, and get paid while doing so!

Like all young couples, their furniture is a collection of castoffs from various relatvies, the driveway is still not paved and probably won't be until the spring, I don't know if or how they're going to be able to get out in bad weather. But, they're happy.

We brought them sandwiches from a deli we passed on the way for lunch - and stayed for about 2 hours. I declined the tour of the garage and unfinished basement, and instead collapsed on their sofa.

An hour driving home, going a diffrent way, door to door, we were gone 4 hours, the longest time I've been out of my house in about a month.

(c) 2006 uncertain4sure LLC

Unbe-freaking-lievable

2006-12-07T15:07:00.000-05:00

After a 4 week long battle with my drug insurance company, which I will no longer name, after someone left a comment about having worked for that company & thinking they were affiliated with a funeral home/mortuary business:

* my rx. for Procrit is suddenly approved by my employer, got a call Monday, haven't mentioned it, husband deleted caller ID record, thought I had imagined the entire conversation.

* the drug insurance company calls me Tuesday a.m. and asks me if I want a refill on my Neupogen. I know I still have one dose left, they don't. I tell them I'm going to the doctor on Friday and will let them know if he wants me to refill it.

* I call a different person at the drug insurance company later Tuesday, nothing in the system yet about Procrit - would I like more Neupogen? NO!

* yesterday a.m. 8:30, I'm at home, where else would I be? The drug company calls my husband, at work, on his cell phone and asks if I'll be home today, Thursday, to accept delivery on a shipment. He says sure, where else would I be?

* 11:00 a.m. yesterday - I get back from my blood test, there is a 10-minute old message from the drug company on the answering machine. Can they send me Procrit and Neupogen? I tell them to send me Procrit, hold the Neupogen until I see the doctor Friday. Do you need a credit card number I ask? Oh, no, ma'am, your family is over your yearly deductible, no payment is required.

* 4:30 P.M. yesterday - husband arrives home from work, tells me the drug insurance company called him at 8:30 a.m. and is sending me something, well 2 things actually, to arrive today. What things I ask? I don't know, says the husband, name some things you're taking. Pegasys? No. Ribavarin? No. Procrit? Yes. Neupogen? Yes. I didn't want that, I cry! Well, you're getting it, he says. I told him I talked to them at 11:00 and only authorized Procrit. Well, maybe that's all you're getting. Spend a sleepless night wondering what exactly I am getting....

* 9:30 a.m. today - UPS truck pulls up, I go outside to sign for package - no signature required because my family is over its yearly deductible. Inside I find: 4 doses of Procrit, 4 doses of Neupogen, ten syringes, needles guards, alcohol wipes, bandages, new sharps box, and a partridge in a pear tree (just kidding about that last item). The ten syringes are probably worth more in certain markets than are the $3,000 worth of medicines, and are now taking up valuable room in my combination safe.

Why did this happen? Well, now that I'm approved by employer to have these medications, the drug company is in the business of selling them. And, a little bit of "talk to the man, don't talk to the woman, she doesn't know what she needs, if she says she doesn't need something, talk to the man, he'll know what she needs."

So, the plan is: 1) use my Pegasys travel cooler to take one dose of Procrit and 1 syringe to my apt. w/my P. Ass tomorrow, and if my blood test yesterday says I need it, learn how to do the injection for that then 2) call the drug insurance company next week and tell them to take my husband's cell phone number out of their databases and never call him again!

Groundhog Day - The HCV Movie

2006-12-04T14:48:00.000-05:00

Every day is the same, from Monday through Friday, when you're all alone with your dog, who is not much of a talker, from the time your husband (who you're not really talking with too much these days) leaves for work until he comes home.

There are the early morning news shows: Good Morning America from 7 to 9, which remind me of a line in an old Joni Mitchell song "all the news from home brings more about the war..."

Then at 9 I switch to the expanded last hour of the Today Show, which runs till 10, then, I'm ashamed to admit, Regis and Kelley from 10 to 11. I actually saw 12-year old Dakota Fanning interviewed twice today, once on either GMA or Today, can't remember which, then on Regis and Kelley promoting Charlotte's Web.

Then there's The Price is Right from 11 to 12,

Oh, I actually had some excitement today - the Radon pump stopped working last week, today 2 servicemen came out to fix it. It appears the motor burnt out suddenly last week, and the pump repairmen found roofing nails and materials inside it, from a new roof we had put on more than 2 years ago. So, tomorrow's excitement will be contacting the roofer and asking them to please send me a check for $350.00 to cover the cost of replacing the radon pump motor. I will probably need to write a letter.

The goal of the day (met) was to put away some laundry I had washed last week, the side effect of the day is dull headache. Took 2 tylenol at 8:30, need to take 2 more soon, that should hold me till bedtime.

From 1 to 2 there's Days of Our Lives, which I've been following off and on for 40 years.

2 to 3 is dead time TV wise, and now it's 3PM and time for the Ellen DeGeneres Show, followed by Oprah at 4PM.

12/5/06 - The side effect of the day is achey knees and right foot, also sudden bumpy red rash that appeared on chest area (only the area not usually covered by a bra) and upper arms. Possible cause: eating a yoghurt-like product called Activia, which is supposed to contain beneficial digestive enzymes. That's the only new thing in my life since Sunday. Or else winter dryness, I've had this rash on my arms before in the winter, never on my chest. What I'm doing to treat this: apply moisturizer twice a day, fortunately it does not itch. What I can't do: use any Cortisone products, as I'm allergic to these.

The goal of the day is meet the photographer from my daughter's wedding, return the proof pictures to him and give him her selections for an album and enlargements. Challenges of this goal: 1) the photographer is a talker, and thinks he does better work than he actually does, 2) daughter was not exactly clear on how she wants her album arranged. Contract called for 90 pictures on 36 pages, she picked 90 pictures and only put them on 32 pages, 3) I'm tired and cranky. Thing in my favor: photographer is having root canal surgery this morning and may be too tired to argue with me.

12/6/06 - Must try to remember that not everything that happens while on HCV treatment is related to HCV treatment. While trying to think of what else is new in my life that could have caused the above mentioned arm and chest rash - I realized that on Sunday I wore a wool sweater for the first time since last March. The rash is the area that touched the sweater. Yesterday, before I figured this out, I wore a wool scarf for the first time this winter. Of course, my neck and lower face now have the rash as well. Well, guess I need to break out the Old Navy performance fleece sweatshirt I already own and get to a store today or tomorrow, sometime, and buy a new scarf and hat.

The goals of the day are bi-weekly blood test and food shopping, picking up some prescriptions from the pharmacy located inside the supermarket, and staying warm without wool.

Injection 8, Sides Changing & Guilt Trip re Type 2

2006-12-01T06:40:00.000-05:00

Did injection #8 yesterday, barring any more "recovery drugs" this means only 16 more injections left.

Sides are changing, or maybe I ran around too much yesterday, going to the gyno. (yeah, you still have to do that if you're a woman, whether you're on treatment or not), stressful quantatative PCR (after a more understanding receptionist at the lab, finally figured out what the Ass wanted and looked up the proper code for this test), requiring two holes being punched into my arm, but at least the phlebotomist who missed vein #1 on the first attempt and was missing vein #2 on the second try, had the sense to hold the needle in my arm, call her co-worker for some help, and the co-worker found vein #2.

Headache all day thereafter, took the maximun allowable amount of tylenol, which did nothing for the headache. With platelets now at 215, down from almost 300 pre-treatment, I'm now afraid to take Advil. Oh, and I don't know for sure, this has never in my entire life happened to me, but I think I'm developing a cold sore on my lip. Lovely, just lovely, must really get out today before winter blows in tomorrow and pick up some over the counter (probably worthless) cream for this.

Today: woke up achey already - to date this side usually doesn't hit till Saturday. Drinking some coffee, ate some breakfast, took my Riba. Think I may be feeling a little better already. God Bless Caffeine!

Feeling a little - don't know how else to say this - guilt over being a type 2 and only having to do this for 16 more weeks. Some of my best friends in the world are now my virtual friends, the people who now understand me better than some physical friends, and they are doing 48 weeks of this treatment crap, and Why? Why was I so lucky to get this randomly good genotype, to win the lottery and only have to do 24 weeks of treatment?

This is NOT something I worked for, studied for, saved up for, or deserve. This is as arbitrary as having been born beautiful or having been born rich (which I wasn't). At least if I HAD bought a HCV lottery ticket, I could say that, I deserved to win this as much as anyone else.

Better, nicer people than I am started treatment before I did and I'll be done before they are. Why? Why?

The maddening part of this is that I can't even allow myself to dwell on this, otherwise I WILL get depressed over it, which is the last thing I need.

Dec. 2. 2006 - Yes sides are definitely changing. Worst days were injection day and day after, now up to nausea day - I seem to have skipped two days. If this "pattern" holds, I could technically go to my husband's company's Christmas party next Friday night, if I do my injection early on Wednesday, which is when I was going to do anyway to transition to Tuesday the following week. Except it's at a museaum and I don't know if I could handle all the walking around and looking at artwork...wish it was just a simple "sit down and eat" party or even something with a cocktail hour first, I can usually find a chair at once of those, but I don't know about a museaum party...Oh, and there could be music and dancing - not up for dancing...
(C) 2006 uncertain4sure LLC

Well, I Thought Wrong

2006-11-28T12:38:00.000-05:00

Thought this was going to be a nice, stress-free, blood pressure returning to what passes for normal, non-blogging day. Well, I thought wrong.

Background: Last Tuesday my Ass wrote what he thought was a lab slip for a quantatative PCR test. I took it to the lab, they plugged in the number he wrote, the test came up on the paper the lab wanted me to sign as Qualatative, I refused to sign and did not have the test.

So, since I have been around the block a few times with this particular test and this particular lab, the last time the Ass (or was it the doctor?) got it right, I wrote down the correct code for a Quant. PCR, and kept that number in my ever-thickening HCV treatment file.

On Wednesday, I mailed the wrong lab slip back to the Ass, with a letter listing the right code for a Quant. PCR, and a self-addressed stamped envelope, for him to send me a correct lab slip via return mail.

At 11:30 today, as I was pulling myself together for a trip to the pharmacy to pick up yet another prescription for yet another medicine I'm on, (Ass does not understand my complicated thyroid history, and refuses to order extra TSH tests for me in addition to what Roche/Pegasys recommends, which is another issue) the Ass called and insisted he had written down the correct code, and that if I had no confidence in him, I had better find someone else to treat me!

I tried to explain that I had had problems getting this test done before, due to the wrong code being written on the lab slip, and that's why I had written down the correct code earlier this fall, when all concerned (the doctor or Ass and the lab) finally got it correct. He insisted that he was looking right in the lab book of codes and what he wrote last week was correct. Not wanting HIM to fire ME as a patient over the phone, I said, fine, send the original lab slip back to me.

Then he hung up so quickly, that I never did get to ask him if I should stop taking the Neupogen (an important little detail he neglected to mention to me yesterday, and I have one dose left) as my whites and ANC are back in the normal range, so I had to call him back - not more than 60 seconds later, but by then he was already with another patient, so I had to leave a message with his secretary, and she was the one who called me back ten minutes later and told me that he said, yes, discontinue the Neupogen.

So, I'll go have the wrong test, have another hole punched in a vein for no reason, it will say I've got HCV antibodies, and I won't know my viral load next week and if I'm undetectable or not. Then I'LL FIRE HIS ASS IN PERSON!

I'll admit that he knows more about gastroenterology in general than I do. Why can't he admit that I know more about the correct code to write down to get a HCV Quant. PCR test than he does? Could it really be that I am the first HCV patient he is treating? I tried to suggest that the book of codes he was using MAY be out of date and the lab had a new book, he didn't want to hear it.

So, I have one more appointment scheduled with him for next Friday the 8th, then what do I do when he doesn't have my viral load (if any) because that test was not run, due to the wrong code being written down on the lab slip, and I confront him with the evidence of his incompetence?

Ask to be transfered to the female doctor in his practice who works without a Physician's Ass. or try to find another G.I. doctor from a different practice in the middle of treatment?

I suppose I should try to get this Ass to order the second half of my meds before I fire him, maybe I should line up another G.I. doctor before I fire him as well.

Since 1998, no one in this G.I. practice has done anything right for me. The first doctor I saw kept insisting my liver was fine, my liver was fine, running only the most basic and cheapest liver function test. Then for a while in 2000, he told me that my viral load was so low that I'd be considered undetectable and he thought I had cleared the virus on my own. Then, a year ago, the first doctor suddenly announced that I wouldn't be considered undetectable and pushed me in the direction of treatment. Then I found out I would have had a better chance of SVR if I had begun treatment before I turned 50, rather than afterwards. So, I fired him and asked to be transfered to a younger doctor in the same practice, not realizing that treating HCV patients was sub-contracted by doctors to physician's asses. And then, since if it weren't for bad luck, I'd have no luck, I seem to have drawn the worst physician's Ass in the history of physician's Asses!

So, I guess I've really answered my own question, and if I can't transfer to the woman doctor in the practice who doesn't sub-contract her HCV patients, I should talk to my primary care physician about finding another G.I. doctor.

And, since I kept a copy of the incorrect lab slip and the letter I wrote when I sent it back to the Ass, there will be hell to pay, complaints to the proper medical authorities, etc. regarding the extra hole (at least one - possibly two, if the phlebotomist has problems finding a vein) that is going to be punched in my arm later this week for no reason, possibly a law suit. Either now if I transfer to a doctor in another practice or when I'm done treatment, if I transfer to the female doctor in this practice.

God Bless America - the only place in the world where if someone makes your life miserable, and you're smart enough to document it, you can sue them!

Have a nice day y'all.

(c) 2006 uncertain4sure LLC

Post Turkey Letdown

2006-11-27T07:21:00.000-05:00

Sub-Title: A boring day in the life of someone on HCV treatment.

Interesting fact: Today would have been my parents' 57th wedding anniversary.

Woke up at 4:00 a.m. Went to the potty, took my Levoxyl thyroid medicine with some H20, tried to fall back asleep. Husband snoring pretty loud, gave up and got out of bed at 5:00 a.m. At that point, my back really hurt from sleeping on a ten-year old mattress, model name "the Granite," that we both liked back then, and I needed to sit upright in a rocking chair for a few minutes to straighten the back out, before finding the energy to make coffee. Poured a glass of orange juice, took the butter out to soften up and got the coffee machine going by 5:15.

Breakfast at 5:30 - 2 slices of 12-grain bread with lots of butter, 2 riba, one cup of coffee. By 6:00 a.m. - coffee has kicked in and it's time to take the antibiotic I put myself on last Wednesday for a throat/swollen gland thingie.

Husband woke up at 6:00, left the house at 6:30, no more good-bye kisses since our big fight last week, but he did make me a cheeseburger last night, so at least we're being civil (since the remote control throwing incident of Friday the 24th). The cheeseburger was overcooked and unseasoned, but I've learned not to complain when people bring me food.

Next decision point coming up at 8:00 a.m. - to take 2 tylenol or not. Perhaps I'll try moving around a little more and see if I really need them. If I miss this 8:00 a.m opportunity, I won't have any till noon, otherwise I get mixed up with all the pills I take each day - you haven't heard half of them yet.

Goals for the day: 1) Obtain results of Nov. 21, 2006 lab test and find out if I'm more anemic, less anemic, or the same as on Nov. 7. 2) Call several pharmacies and get price quotes on 4 doses of Procrit plus four disposable syringes. Can I not boil some of the used syringes I already have and re-use them, or will the plastic parts melt if boiled? Well, I think the syringes will be cheap, compared to the Procrit, may as well get new ones.

8:00 a.m. - took the 2 tylenol and turned the bottle sideways, so I'll know I've taken 2 already today. Back feeling much better already.

8:30 a.m. - ate some yoghurt to help some...digestive issues...brought on by the antibiotics.

9:00 a.m. - getting ready to take 1/2 a HCTZ for high b.p. (it was 178/80 at the Ass's office last week, but I think that was mostly due to stress.

Thinking about watching Brokeback Mountain on HBO, we have "on demand" so I can always stop it when my Ass's office opens in 1/2 hour, then start it again whenever.

10:16 a.m. - left message for Phys. Ass. re my 11/21/06 blood work @ 9:30, no call back yet. (What do I expect calling the day after a 4-day weekend? Well, I expect someone from their office to get my damned results from the lab even if this them means calling the lab, and then I expect someone to call me back before this movie is over - Brokeback Mt. turning out to be not as bad as I thought it would be.)

10:55 a.m. - OK, this movie is now officially getting boring. But, it's like a used car - I have too much time invested in it to stop watching it now.

11:35 a.m. - finished watching Brokeback Mt., 2 hours and 15 minutes of my life I'll never get back. It was OK, but I can see why Crash won the Oscar for best picture that year.

Called the head honcho at my Employee benefits review committee, was connected with her secretary and left a message asking when my case would be reviewed.

Next decision - to get dressed or not? I think I will, I hate sitting around in pajamas all day, I feel so sick doing that, when today, I'm not really feeling all that sick. I think I actually hit a blood vessel doing my injection on Thursday, and the worst is over for the week. Good news for me, probably good news for any HCV viri that may still be in my liver - they can probably sense the interferon's been interfered with and they can come out and party!

But, first, I'm going to try to call the lab where I had my blood test last Tuesday and see if they'll give me the results over the phone, don't want to bug the Ass again till after lunch. Oh yes, lunch, that's also a decision to be made!

To be continued - hang in there anyone who's reading this - I promise I'll never do another post like this again.

12:15 PM - called main 800 number for lab that ran 11/21/06 CBC and was told that results were sent to my doctor's office on 11/22/06 and could not be given out to me, even with my DOB and SS#! P. Ass's office now closed for lunch. I'm eating 1/2 a bologna sandwich.

12:50 PM - called 1st pharmacy (big national chain) for price of 4 doses of Procrit - $2,434 and now I am getting nauseus, my usual Monday side effect, maybe I did do my injection correctly last Thursday. Called 2nd pharmacy - put on hold for ten minutes, hung up - must keep this line open, don't ya' know, I'm expecting important phone calls from my P. Ass and Employee benefits dept. Next stop: drugstore.com, then using my work cell phone to call a few more pharmacies, as this IS a work related matter - I can't work without this stuff.

1:30 - drugstore.com price = $2,176.98 this does not include syringes. Wrote down customer service # to call about that. Called 3rd pharmacy: $2,400/Procrit, syringes $.30/each. Can be obtained overnight, except on Fridays (closed Sat and Sun, a real old-fashioned kind of place!) Offers free delivery.

2:40 PM - So how does this happen?

Just got the results of my Nov. 21, 2006 blood test. Most things are back in the normal range:

WBC - 7.3 up from 2.9 on Nov. 7th

RBC - 4.86 up from 3.18 " "

Hgb - 14.4 up from 10.7 " "

Hct - 41.6 up from 30.9 " "

ANC - 3.6 up from 1.5, thanks to Neupogen, guess that also explains the WBC rise

and RDW higher (18.7) up from 17.5 on Nov. 7, which was higher than the normal range, which my Ass just explained means I'm making new blood cells, and this is a good thing.

So, what to do? 1) Stop calling pharmacies and pricing retail Procrit. 2) He (the Ass) advised letting my employee benefit review committee rule on the Procrit, and if they approve it and send it, don't take it, save it.

I told him I thought the committee would call him for updated lab results, especially since the letter he wrote on the 17th said I was having more tests last week. He said he didn't think so. (He knows SOOOO much more about how cheap my company is than I do, since he's been dealing with them almost a month now, and I've only been working there 20 years.)

I don't think these are my results - I think they got my blood mixed up with someone elses! Still can't walk 50' to the mailbox without getting exhausted.

Actually, I am exhausted, think I'll take a nap.

Interesting Fact of the Day #2 - my son was rear-ended Wednesday night (he's OK, but his car's a mess) and needed to borrow my car until he could arrange a rental on Friday. He tore my handicapped parking permit off the rear view mirror - I mean he really tore it, I had to repair it with tape, when I got the car back, and he never asked me why I even had a handicapped parking permit.

(c) 2006 uncertain4sure LLC

I Feel Undetectable

2006-11-20T09:41:00.000-05:00

...even tho' I wimped out of a 4-week PCR, I woke up this morning feeling undetectable. So, I had to get rid of the puke green blog background and pick a calm, cool color.

Still have to decide if I want to risk having an 8 week PCR...and possibly hosing the holiday season with anything less than excellent news. Doing this (8 week PCR) would give me time to change to the other interferon, which is molecularly different from the Pegasys I'm on, to wipe out any HCV stragglers that may still be around.

Or, I could wait for the standard Type 2 12 week PCR. Decisions, decisions.

Well, I'm making them, little by little. Bullied my way into a 3:PM apt. 2morrow w/my Ass. Bringing my junk yard dog husband (JYDH) for back-up. Perhaps they (Ass and JYDH) can communicate better "Mano a Mano," than Ass can communicate with me. Men get treated better all around in the US medical system. (I should have picked a female G.I. doctor, well, that's water under the bridge.)

Or, if nothing else, JYDH may be able to stop me from strangling the Ass and spending Thanksgiving Holiday in stir.

Later - well, I'm not the one who doesn't understand the system, it's my Ass. Just got my denial letter from Caremark, mailed November 15, 2006 from Scottsdale, AZ for only $.308 cents (a first class stamp that costs $.39, would have gotten it to me by 11/17/2006, but hey, Caremark saves $500 a week every week they don't let me have this drug) saying the request for Procrit was being turned down because i don't have non-myeloid cancer, HIV, myelodysplastic syndrome, chronic renal failure, nor am I having elective, noncardiac nonvascular surgery.

So I called the Ass's office and left a message for him saying that I'm coming in tomorrow at 3:PM with the JYDH and want "a letter of detailed medical justification for the denied prescription written by my physician on my physician's office letterhead" and I want this ready and signed by a doctor by 3:PM. The Ass has basically "blown me off" for a week now, I feel like I'm living in a base camp at 17,000 foot above sea level, getting ready to climb Mount Everest, and I faxed in my appeal of this decision on 11/15/06, but the time for my employer's benefit review committee to consider all this won't start ticking until the copy of the denial letter and letter of medical necessity is also faxed in, and through no fault of mine, the Ass has made my life even more difficult for the past 6 days by refusing to concede that I know more about this appeal process than he knows.

It would be nice if I could convince the JYDH to punch the Ass tomorrow, well, stranger things have happened! Actually, it would be nicer still to get out of the Ass's office tomorrow without the police being called!

Tuesday Nov. 21, 2006 update:

Well, bringing a man with you to a doctor's appointment tells them you mean business. The doctor even walked in (I haven't seen him since July!) and said I had several choices:

1) change drug insurances - how can this doctor be in business and not know how drug insurance works? The place I work only offers one type of drug insurance, we have a choice of several medical plans and dental plans but only one drug insurance + even if they offered more than one plan, you can only change plans during open enrollment, which won't come around again till June (thought my husbands company worked on a calendar year, but they also work on the July - June year my company uses, so that's not gonna work)

2) buy myself a few doses of Procrit, which I already thought of, and they gave me a paper Rx for a 4-pack

3) wait till my Hgb drops some more, and they sent me for another CBC to see if it did, &

4) stop treatment - NOT AN OPTION.

Then he explained Catch-22 to my idiot husband: the drug insurance can deny me Procrit because I'm not anemic enuf, then 4 weeks from now if I'm more anemic, they can refuse to send me the second half of my meds because I'm too anemic to stay on treatment. This is only something i've been trying to explain to my husband for a week, but I'm just a hysterical bitch wife who knows nothing, but as soon as the doctor explained it to him, he got it.

So, they had the appeal letter ready for me to fax to my review committee, it was actually dated last Friday, and after I had my CBC, we stopped at an Office Depot and i faxed them everything they need, and I should have a decision one way or another by the end of next week. In the mean time, i would bet that my Hgb has now dropped below the magic 10.0 # and my Hct is below 30, so I think I'll just have to hold on another week or ten days, and the insurance company will have to give it to me.

If not, I'm going to have to call every pharmacy around, find the best price - and they are all around $2,000 - $2,100 for 4 doses - and charge this, so I can bring my numbers up in time to re-order. The appeal letter actually said they were thinking of taking me off treatment, don't know if they were serious about that or just saying it to help me get the Procrit. But, I'm scared.

Oh, and i said i wanted a PCR to see what my viral load is, if I'm really undetectable or if I'm deluding myself, so I thought I could get that done with the CBC, but the ASS screwed up the lab slip, wrote the wrong code for qualatative not quantitative, so I didn't have that done today. I told the lady at the lab that I could look through her book and pick out the right code, and fix the lab slip, but she wouldn't let me!

Tomorrow I'm going to be running around picking up my pre-cooked thanksgiving dinner from Safeway - I have never done this before, but I am just too tired to cook, plus the toys I ordered from Toys R Us, 2 weeks ago for my granddaughter's birthday, that we're going to celebrate on Thanksgiving, haven't arrived yet, so I have to go toy shopping too, and if the stuff I ordered ever arrives, give her that next month.

So, I'm going to write the Ass a letter and tell him what the right code is for a Quant. PCR and just mail it to him, and then maybe he can mail me a correct lab slip and I'll have the PCR next week.

So, now I know: always bring a man to a doctor's appointment when you want results. When I don't have this one anymore, i think you can rent husbands - really, there is a place called Rent a Husband that mostly does home repairs, but i think you can probably rent one for any reason and it may be cheaper getting one to just go to a doctor with you than for hard stuff like painting or cleaning gutters!

Saturday, November 25, 2006

Riddle: What is more pathetic than an old married couple watching 2 different old movies in 2 different rooms, on 2 different TVs?

Answer, as I don't expect that anyone reading this has any more patience for riddles than I have: An old married couple watching the same old movies in 2 different rooms on 2 different TVs. But, after last night's ugly remote control throwing incident (by me), it's probably for the best. For the record, I threw it on the floor, not at anyone or anything. And it still works, having had the good fortune to land on carpet instead of hard wood. Well, Steve McQueen in The Cincinatti Kid was good, Gary Cooper in Pride of the Yankees is not working out for me. Time to get my daily exercise - walk 50 feet to the mailbox, then channel surf.

(C) uncertain4sure 2006 LLC

Don't know who to believe, 25% done

2006-11-16T11:08:00.000-05:00

Just did injection #6, 25% done with those kinds of injections. Still have 3 Neupogen in the fridge & wondering if I should try to stretch them out by doing them every 8 or 9 days, or doing next one Saturday, like I'm supposed to? Avoiding germy people like the plague, haven't left my house all day. No Germs Welcome Here!

My physician's Ass says my Procrit appeal is still being reconsidered by Caremark; Caremark tells me it's out of their hands, I have to appeal to my Employer Benefit Committee. I don't know who to believe. Well, actually, I think my Ass thinks he's telling me the truth, but he's being lied to by Caremark to stretch out the appeal process, save themselves $500 + week that Procrit costs. Soon they'll be able to blame the stretched out appeal process on Thanksgiving, after that, they'll blame it on Christmas and New Years. After our last conversation - the Ass called when I was setting up for my injection and said to give the appeal a few more days, I just told him to have a nice weekend, and I'm going to try to do the same. I'm tired and I'm gonna do a Scarlet O'Hara - I'll think about it another day.

Hemoglobin? Hematocrit? I don't got no stinkin' Hemoglobin! I don't gotta show you no stinkin' Hematrocrit till next Wednesday's lab test!

Although now my weekends consist only of watching football (hope Penn State is playing a team they can beat tomorrow, hope Joe Pa heals OK, hope Notre Dame has a good game this weekend - love their cutie-pie QB!) Those are the two college teams I support. On Sundays there's the Ravens who are doing amazingly well, but why does each win have to come down to the final two minutes or less? Very stressful!

And arguing with my husband. And joy of joy, after Friday, he's off all next week!

So tired that last night I found myself drinking H2O from my granddaughter's Cinderella sippy cup, cause I didn't have anything else with a top or a straw, and the dog has knocked over 3 glasses of my H2O in the past 2 days. Ended up eating yoghurt and microwaved oatmeal for dinner.

Oh, and my marriage is essentially over, all that remains is working out who leaves who (and I am not moving till I recover from treatment) and some property issues.

November 17, 2006

1. So there I was at the library story hour (for 2 to 6 year olds) with my 30-year old son and 2 year old granddaughter, and one of the librarians was reading a book about animals and the sounds they make, and all the kids are doing great, then she gets to a Koala bear and asks what sound a Koala bear makes and none of the kids knows - I don't think Koala bears make a sound, correct me someone if I'm wrong - so, since none of the kids are answering I shout out "Aussie, Aussie, Aussie, Oi, Oi, Oi," and my son moves his chair ever so slightly away from mine.

Well, that's not the answer the librarian wanted: she wanted to teach the kids "G'day Mate," but I don't think her answer was any better than mine. This is how American children grow up with misinformation regarding Australia, like before I learned about gravity, I grew up wondering what kept Australians from falling off the planet, since their end of the world pointed downward.
Then she reads a book about kids and their mothers, and I look around and realize that my son is the only man there, as he works shift work, and he and his babies' mama are separated. So, the story gets to the point where the librarian asks if any children want to sit on their mother's lap and a few do, and my granddaughter is looking like she's feeling left out, so, still trying to get her to grasp the concept that I'm her Daddy's Mama, I ask my son - twice - if he'd like to sit on my lap - and after the second time he tells me he heard me the first time.

Then story hour ends and my son gets me and his daughter into his car as fast as possible and takes me home.

2. Later at the supermarket, I see a fat, ugly woman loading groceries into a Chevy Suburban gas guzzler taking up not one, but two, handicapped parking places. (I now have a handicapped parking permit.) So, I pull back a little, wait at least two minutes, then a non-handicapped parking spot opens up a little further away and I go for it.

As I walk by her car, she's still yacking with some ugly man in the passenger's seat, hasn't even turned her engine on - I make the universal "roll down your window gesture," and she does and I scream at her that due to her taking up 2 handicapped spots with her big-ass, fossil fuel eating POS, I had to park 50 feet further away! She says she's sorry, I say, "yeah, sure you are." She says she has a handicapped license plate, do I want to look at it?

I say, "No lady, I don't even want to look at your ugly face," and walk into the supermarket.

(C) 2006 uncertain4sure LLC

Me vs. Caremark Drug Insurance Co.

2006-11-13T14:05:00.000-05:00

Their motto is: "It all starts with care."

On Nov. 8, 2006, I had a blood test (CBC) that revealed my Hgb had dropped to 10.7, well below the 11.5 considered anemic in the US. At 10:00 a.m., my physician's assistant called in an Rx for Procrit and also Neupogen, as my WBCells were also crashing (WBC 2.9 and Neut 1.5)

I ran some errands, then got home by 2:PM, sure that I'd have a phone message from Caremark asking me for that all important credit card information before they shipped these medications. As there was no message on my answering machine, I called them and found out that my physician's Ass actually had to FAX these Rxs to Caremark, not just call. I called his secretary and gave her that information to give to the Ass, and he faxed the Rxs.

An hour or so later - it all runs together due to brain fog and lack of O2 getting to the grey matter, Caremark called back and said that the Neupogen had been approved but, not the Procrit! Gave Caremark the credit card # they wanted for delivery on Saturday, tried to get through to the doctor's office - have you ever tried to get through to a doctor's office on a Friday afternoon? - and finally got in touch with the low doctor on the totem pole for the weekend, who called Caremark in Wilkes Barre, PA to get the Procrit approved, but by then it was after 5:PM, and - have you ever been to Wilkes Barre, PA or seen the TV show The Office, set in Scranton a few miles away, pretty depressing places - everyone had gone home (or more likely to Happy Hour). Asked the doctor if she thought I would die over the weekend with a Hgb of 10.7, she said she didn't think so, so I gave up and called it a day.

Neupogen (4 doses) arrived Saturday a.m. without instructions - except for "keep this cold." Figured out how to inject this by looking it up on line.

Saturday and Sunday - sat around my house like a bump on a log, no energy to do anything. Had to actually sit on a plastic stool in my shower to have enough energy to wash my hair for the first time in two weeks. With food supplies diminishing and a husband more interested in watching football than going food shopping, ordered some groceries on line, they are supposed to be delivered tonight.

Monday a.m. - today - first thing. Got on the phone to Caremark, asked them what my doctor or Ass had to do to get this approved, got a secret phone number for my Ass to call, called his office and gave this to him. Called Caremark, gave them my cell phone #, told them I was going out to buy the 3 items (milk, bread, and ice cream) I could not order online, and could they please call me when they needed my credit card #. No phone call.

Back and forth on the phone between Wilkes Barre, the Caremark pharmacy itself in Richardson Texas, about 15 miles from Dallas/Ft. Worth airport, my physician's Ass, finally at 1:39 PM someone at Caremark advised that the prior authorization for Procrit had been denied. No reason for the denial could be given to me. (I'm only the patient.) I was given a "reconsideration phone number" for my Ass to call, and was told that if he'd call and stay on the line, a decision could be made at that time. Called my Ass's office with this #, was told by his secretary that he had already appealed the decision and was awaiting further information, he would be in touch with me today.

Why is this happening to me? This is not a question of self-pity - I know why it's happening. Caremark had to approve the Neupogen, because they'd be in serious trouble if I came down with an infection, but if I have to stop HCV treatment because my Hgb and Hemocrit and RBC #s get too low, then they'll save themselves $4,647.95 on the Pegasys and $798.82 on the Riba if I can't reorder my next batch of these meds.

At this point (2:33PM EST), I feel I have maxed out my bitchy abilities, and have no alternative but to turn this over to my junk yard dog husband, who is expected home within the hour. Frequently when a man asks the question "why are you doing this to my wife?" he gets a more sympathetic response than a woman gets when she asks the question "why are you doing this to me?"

Watch this space for updates. How low can a person's Hgb, hct and RBC drop B4 they are taken off HCV treatment?

Monday Nov. 13, 2006 - Well, I did get some answers from the Caremark pharmacist by calling on the doctor's only phone line - seems Procrit is only authorized by them for tx of chemo/cancer or HIV related anemia. Trying to get an alternative approved. Epogen or something else that starts with an A. Junk yard dog husband still not home - never here when I need him!

Later Monday - Latest update and probably last word for the day on this matter - Caremark ins. co won't approve Procrit "off label" for my kind of anemia until Hgb drops below 10 and Hct drops below 30. Phys. Ass. appealing, but I'm sure he'll be told by X insurance co. to pound sand

Tuesday Update - Me = 1, Drug Insurance Co = 0 My P. Ass just called to say that, on appeal, he kicked my drug insurance company's ass about the Procrit, and I should be getting that all important phone call regarding a credit card for my portion of the co-pay, and what a difference a day makes! (Still can't believe all this until I get that call for the credit card #, but I was about to ask for anti-ds, not doing that now.) Thanks to all who put me in their prayers, those who advised me how to get rx drugs from Canada, (I was actually checking out flights to Toronto before the phone rang) and especially those who MUST REMAIN NAMELESS, who offered to stretch their own limited supply of this medication by sending me some to help me, but you know who you are. Gonna go let myself have a little cry, then tell what's his face, the not helpful junk yard dog, then wait for the phone to ring.

Wednesday -

AGGGGHHH! It now appears that the info. from my Ass yest. that the decision on me getting Procrit was reversed on appeal (meaning, I'd get it) was not correct. It seems an an appeal was filed, and my employer's benefits review committee has 30 days to make a decision - from the time I fax a cover letter, (which i didn't know about & haven't done),a letter from my treating dr. w/detailed medical justification for my appeal, and a denial letter from the plan, supposedly mailed last fri. or mon. or tues., it all runs 2 gether when not enuf blood w/O2 is getting to my brain, but I haven't received this yet. Now on phone w/someone named Libby who is on the management team for this bull shit company (I would call it a Mickey Mouse co., but wouldn't want to insult Goofy), who is further researching whether Caremark ins. co is reconsidering my Ass' request - an internal matter w/in Caremark, or if in fact it has to go before my employer's review committee. If it has to go b4 a committee, and it can help that I haven't been able to come to work in a week, since i can't think straight, this may help my appeal. So, here I am burning daylight again...

Still waiting for FMLA to Be Approved

2006-11-09T11:57:00.000-05:00

How I got HCV

2006-11-07T08:34:00.000-05:00

I know I really haven't answered this question yet, so here's the short, exhausted version

I blame my husband.

* Got me pregnant, well I wanted to be pregnant, but it was his demon seed that did it.

* Day after due date, convinced me to have labor induced, cause he was tired of waiting around for the baby to be born, wanted to go sailing.

* So, I went in for an induction, 30 hours in labor, still not dilated, emergency C-section, which led to blood transfusion, 22 years later, donated blood, diagnosed w/HCV.

*Therefore, his fault I have this.

I told my husband: I want to inject just one shot of Pegasys into him, so he can see what the side effects feel like (then I'll get on the phone with Roche and tell them that I accidentally broke a syringe, so they'll send me another) and he didn't want to do it. So, then I made him read the entire Pegasys brochure and he thinks I just need sleeping pills and that will make my life better and I'll be able to shop and cook and clean again!

I find myself being rude to people more and more. Thursday I went for my labs and an old couple in a Buick cut me off for the last good parking space near the building. So, I had to park further away, then I saw them shuffeling to the building and I thought "two can play at this game," so I sped up, passed them entering the building, did not hold the door open for them, got on the elevator to the lab on the 3rd floor, did not hold the elevator door open for them, and got to the lab and signed in ahead of them so, i got taken first! (My Hemoglobin is holding at 11.5, only went done .1 from the week before.) There was one man ahead of me when I got there. Then they walked in and said they were fasting: could they go first? I asked the man ahead of me if he was fasting and he was. I was also fasting, so I said "We're all fasting here," and did not let them go ahead of me.

Then, I did the same thing to an old lady at the supermarket who was heading for the last electric shopping court. She was very surprised and said she really needed it, but by then, I was already on it and didn't turn back!

What a complete and total bitch I am turning into. I am going to try to talk my physicians Ass into a handicapped parking sticker. I have to print a form and get him to sign it, if he does I'll take it to Motor Vehicle Administration and get the sticker on Friday.

An Angst Day

2006-11-02T11:37:00.000-05:00

My horoscope said I'm going to have an 'angst' day today. Have already had another blood test and gave myself injection #4. So far, pretty angst-free.

The only other possible angst situation is a mamogram recall in 1 1/2 hours.

Supposedly, I moved or breathed while they were squeezing the sh*t out of my boobs last month, and the radiologist wants to flatten my boobs again and take more pictures. I was also accused of having "dense" breasts, so they want to cover their butts by taking more views. I knew my brain is getting more dense, due to brain fog, since being on treatment, but didn't know it is spreading to my boobs as well!

Four injections down, 20 left to go, threw away my first empty Pegasys 4-pack, 1/6 of the way done!

I simply do not have time to have breast cancer this year, right now I'm working on treating my HCV, God: if breast cancer is in your plan for me, could you please reschedule it for 2008? Thanks so much.

11/3/06 - update - I don't have breast cancer. Radiologist just wanted to take some more pictures, do an ultra- sound.

11/4/06 - update - convinced my PCP to run another CBC on me on 11/2/06, although my physician's Ass said I couldn't have one till next week. Numbers are: TSH 3.5, normal, but i like it when it's a little lower, Hct 33.3 - not too different from last week, Hgb (my main concern, had been worried that it was sinking faster than the Titanic went down) - 11.5, down only .1 from week b4, and ANC/WBC - 4.0 - up quite a lot from week b4, how the hey does that happen?

11/5/06 - exhausted beyond belief. Can't get out of bed, get dressed, go food shopping, and there is no food in the house. Can see this becoming a Dominos pizza kind of day.

11/6/06 - sent my boss an email last night, telling him I had applied for FMLA leave and was expecting it to be approved, oh, and by the way, I was not coming to work today. He replied that he'd like to discuss this with me, behind closed doors, tomorrow. I replied that the company doctor and Human Resources department already had all of the information about my serious medical condition that the FMLA required, and that there was little for us to talk about, other than who would be doing my work while I was out. He called about 10 min. later, fortunately some Jehovah's witnesses or campaigners came to the door, my dog went wild, and I was able to get off the phone gracefully. I now carry a copy of my company's FMLA policy around with me at all times at work, and if need be, I'll drag it out and show it to my boss tomorrow, as I am obviously more familiar with it and its confidentiality provisions than he is.

So, that's all for now.
(c) 2006 uncertain4sure LLC

My Ordinary Life

2006-10-29T08:16:00.000-05:00

Mom met Dad in 1949, fixed up by one of Dad's aunts. Mom was 32 at the time, Dad 37. Mom had tried to have some fun after completing school in the '30s and b4 getting married, but then WWII came along and there were few men to date. By '49 her prospects were fewer and she was ready to marry a man she said she didn't love and get out of her mother's house.

Married in November, 1949, by the summer of '50 she was still not pregnant, and was advised to go away for a week, which she did, then come back and resume attempts to conceive me, which were sucessful. So, I was conceived during Labor Day weekend 1950 and born on Memorial Day, 1951.

There is not supposed to be a "class" system in the US, but in the '50s and '60s there was. How to tell what class you were in was determined by where you rode in cars. (See old '50s and '60s TV and films for confirmation of this.)

* Two Lower class couples, out for an evening together - women sat in the back seat, men in the front.
* Two Middle class couples - one married couple sat in the back, one sat in the front
* Upper class couples - husband from 1 couple and wife of other sat in the back, the alternate couple sat in the front.

My family was lower class, perhaps upper-lower class, as my Dad ran a "Ma and Pa" grocery store with his mother, in the neighborhood where he grew up.
When I was born, my parents moved further out, still in the city, but close to the suburbs.

Grew up in a stable neighborhood, where kids played outside till all hours of the night, women and teenaged girls could walk safely at night and there were no known sex perverts or serial killers.

My mother was both physically and verbally abusive to me, thought that was the way mothers were, until I started school and found out that everyone's mother wasn't like mine. Had a hard time bringing friends to my house - more than once - and grew up painfully shy, not helped by being an only child.

At the same time, my mother was overly concerned about my health, not having more children to worry about or a job. I was a sickly child for about the first 7 years, had my tonsils out at 3, to supposedly stop me from getting sick as often (didn't work). They promised me ice cream - I never got it. That (tonsilectomy) and splitting my chin open and having it stitched up without anasthesia are my earliest memories. I was constantly having blood tests and innoculations and therefore developed a life-long fear of injections. My mother was constantly applying nose drops, ear drops, eye drops, you name it, and therefore developed an life-long aversion to sticking anything up my nose, ears, eyes, and any other orifice. By the time I was 10, I learned how to hide illnesses from her.

In 1960, my mother's mother died, and she had a breakdown, which was not acknowledged or treated properly by her family physician. She refused to see a psychiatrist. Every week she saw the GP and every week she came home with a new Rx for some new psychiatric wonder drug, when she really should have been institutionalized.

This went on for several years, then menopause hit her, precisely as puberty hit me, and things went downhill from there.

I was a "good girl" for the most part, did well in school, didn't cut class too often, didn't hang with the wild boys, I was smart enough to know that if I was home by my curfew, there was no way my parents could find out what I had done when I was out. I was painfully thin throughout my teens, despite my mother's attempts to fatten me up, perhaps because of it, and was not one of the pretty, popular girls.

Started drinking in high school, stealing alcohol from my parents' liquor cabinet, ordering cases of beer from the liquor store to be delivered to my parents' house, then accepting delivery and paying in cash and started planning my escape.

My father's mother died in 1966, and it then became obvious that my Dad had been holding the family store together with a series of loans, smoke and mirrors, and the store went bankrupt soon thereafter. Our family managed to hold onto our house and car, that were in both of my parents' names, but everything else was gone, including the money my grandmother had saved for me (under her name) for college.

However, this put me in good shape to get financial need based scholarships for college, which is what I did. Got admitted to my state university, and left home in the fall of 1968 and never came back except for brief vacations. Majored in drinking (before it was called binge drinking) and doing as little work as possible, but managing to skate by. The two most useful things I learned in college were: my social security number, which I've had to know by heart many times since, and the rules of American football. If you don't know the rules, it seems so arbitrary - why is the clock stopped now, when at other times it continues to tick down? Why does 15 minutes on the clock = 45 minutes until we can eat Thanksgiving dinner? I would advise every American girl to learn these rules!

Since it was the '60s, "I smoked a lot of grass, Oh Lord, I popped a lot of pills, but I never did nothing that my spirit, didn't kill." What song was that from and who sang it? Please tell me, leave a comment about that, if nothing else.

Graduated with a degree in Social Work in 1972, spent 1 1/2 years as a social worker, all my friends at the time were social workers, all we talked about was our pathetic clients, decided I couldn't stand it, and left the US, for what I thought was for good, in 1973.

To Be Continued

10/30/06 - not so good blood results from week 2: Hgb 11.6, down from 13.3 the week b4 and 14.1 b4 tx; Hct 32.7, down from 38.6 the week b4 and 40.7 b4 tx; ANC 2.3K, down from 3.3K the week before. Turned my FMLA form into my company doctor's secretary and wrote down 2.5 hours FMLA on my time sheet for the day. This may be a stretch. They have 15 days to approve the FMLA request, and I should have asked 30 days in advance for "planned medical tx," but I didn't realize I was going to feel this exhausted so quickly.
Have lost interest in continuing my life story at this time, but will get back to it. Trip to Phoenix in early December looking less and less likely, even if I'm on Procrit by then, I don't want to have to carry it through security...

(C) 2006 Uncertain4sure LLC

End of week 2 & 3rd injection under my belt

2006-10-26T14:22:00.000-04:00

Background - the Family and Medical Leave Act was passed while Clinton was president and gives employees the right to use up to 12 weeks a year for a serious medical condition. I think HCV treatment qualifies. Of course there is papework to do for this. My company has a form, I brought this form to my Physician's Assistant, henceforth to be called "my Ass" on Oct. 12, 2006 and asked him to have the doctor fill it out and mail it back to me. On Oct. 16th, I faxed another copy to him. On October 18th, I called and left a message with the secretary, asking her to have the Ass call me. He didn't call.

Not hearing anything from him by Oct. 23rd, I filled the damn form out myself and faxed it to him, asking the Ass to please just ask the doctor to sign it.

On Oct. 25th, I wrote the following letter to the Ass and faxed it to him:

TO: ASS
FROM: Me, patient
Subject: My FMLA form
Dear Ass - I can't believe you haven't sent this back to me already, signed by Dr. X. I gave you a blank copy on 10/12/06. Then I faxed another copy to you on 10/16/06. Then I filled the thing out myself and faxed that back to you on 10/23/06, and all I need you to do is get Dr. X to sign it.

Have you read the possible side effects of the medications I'm on? If I get into an accident because I'm dragging myself to work even though I'm dead tired and nauseous most of the time, because I can't take time off from work without this form, well, I don't even want to imagine what would happen then. (subtle implied threat - you are going to lose your license, your job, your home, your life as you know it)

The FMLA Act has been the law of the land since 1993 or 1994. I find it hard to believe that I'm the first patient who has ever asked someone in your practice to fill out this form. I think I did all of the hard work for you, filling it out, all I need you to do is get Dr. X to sign it, and mail it back to me.

Blah, Blah, Blah, gave him my phone #s for the 4th or 5th time.

This a.m. - dragged myself to work yet again. 15 minutes on hold to the Ass's office to find out that my blood test results for last week aren't in yet. (Yet my primary care physician can get blood test results in 2 days.)

Left work at 11:00 to have more blood drawn, joked to co-worker that they're testing me for anemia - they are, among other things!

Got home -

Well, the Ass finally called me back. Here are the 3 #s he gave me from my 1st week blood test:

HCT = 38.6 down a little from 40.7 b4 starting

Hgb = 13.3 down a little from 14.1 pre tx, and

ANC 3.3K or 33 K - can't read what I wrote, don't have a starting # cause I wrote down the % from last time (67.4%).

No LFT, I don't get that till week 4, no TSH till week 4, although my regular doctor ordered a fasting one for next week, so I'm gonna have one anyway.

The Ass said "not too bad," I said I'm exhausted, he said "that's one of the known side effects of tx" (Mr. Empathy, eh?). I said we'll talk about my sleeping problems when I see him on Nov. 10th.

My sick form is supposed to be in my chart on the doctor's desk, awaiting signature.

At the blood lab earlier, the new woman at the lab found a vein in my left arm - didn't know I had any there - and advised that I arrive at 7:45 next week for my fasting TSH to beat the old folks who get there at 8:00 to wait for the lab to open at 8:30, then have their cholesterol checked, then go out for breakfast at McDonalds! Gonna have to buy Christmas presents for her and Dachau (sp?) trained Karen from last week.

Did my shot #3 already, had the same problem with the needle pulling off as last week, but I bitch slapped it around until it behaved! Now, I'm off till Monday - hope that form arrives in the mail 2morrow or Saturday, so I can turn it in on Monday and I don't have to have a Riba Rage incident.

Filled out my Pegasys journal and rated the week mid-way between Good and Okay, an improvement over last week.

3 injections down, 1/8 of the way through this garbage! Wish I could sleep. So jealous of people who sleep for 15 hours after their injections...

I Start Week 2 a Few Hours Early

2006-10-19T13:19:00.000-04:00

I leave work at 11:00 a.m., drive to the lab in the same building as my G.I. doc's office, park, walk in the bldg., open the door to the lab 4 a woman in a wheel chair and Whoa! Totally packed waiting room, no chairs left, people sitting in chairs have this desperate look in their eyes...

I back out of the office and drive to another branch of the same lab, closer to my house, where Karen, the Bataan Death March trained phlebotomist, put on an extra lab coat (just for me) when I was there once before. No one is waiting in the chairs, Karen and the receptionist are doing nothing and I tell them they have a good thing going at their branch, compared to the other branch closer to town. Karen knows she knows me, but she doesn't know how she knows me. My properly coded lab slip - with a numerical diagnosis code - triggers no alarms with her and she takes me right back to draw my blood. Since she thinks we're old friends and I must be a good, safe patient, she only puts a glove on her right hand, until I tell her that if I were HER drawing MY blood, I'd put a glove on the left hand as well, so she does. She 'sticks the landing' in one motion, and I'm out of there and on my way home, in time to catch the end of the noon TV news.

It was then 12:30 and I have nothing left to do before "Days of Our Lives" comes on at 1:PM, so I decide I'll do my injection then and get it over with. I find my Pegasys syringes in the bottom of the fridge, under the dog treats, in a Walmart bag with a smiley face on it. I carefully take one out, along with an alcohol swab, needle and the directions. I wash my hands and dry them with a clean dish towel. The Pegasys is neither cloudy nor frozen - a back of the mind fear during the past week - so I pronounce it useable.

I try to tear open the needle kit and it doesn't tear, so I cut it open with a scissors. I remove the rubber cap from the syringe and push the needle on. I don't feel it lock into place, and it looks different than the picture on the instructions, so I call the 24-hour Pegassist phone number to get a nurse for advice. Good thing these Pegassist RNs aren't 911 operators and good thing my house isn't on fire. Nine minutes later, I'm still on hold, and I hang up in frustration.

I try pulling the clear needle cover off and I was right, I didn't have the needle pushed down far enough, the entire needle comes off! Fortunately, my PA last week told me to NOT follow the direction about always putting the syringe down horizontally, and I'm still holding it upright, so no medicine comes out. I shove the needle back on, more forcefully this time, and this time, when I pull the needle cover off, the needle stays on.

Since injecting in the gut caused no pain last week, I decide to do this injection there as well. I wipe the area with the alcohol swab, then carry the syringe over to the sink and push the plunger up to the 180 marker. I walk back to my chair, forget where I swabed b4, and pick a new place, swab and take a deep breath, pinch some fat, push the needle in - amazed how insensitive my stomach is, no pain again! - then let go of the fat I'm pinching with my left hand, take hold of the main body of the syringe with that hand and use the right hand to push the red plunger all of the way in. Following my PA's advice, which I don't see anywhere on the Pegasys instructions, I hold the needle in place for about 30 seconds, (so the medicine doesn't run out when you take the needle out), I don't care, at that point the needle is already in me and still not hurting at all, I actually think I'm having an out of body experience by this point, can't believe I'm doing this all by myself, this must be someone else doing this to themselves....then take it out and throw it in a sharps container. I shove the container to the back of the cabinet under my bathroom sink, behind some 10 year old emergency tampons I still keep around for old time's sake.

I manage to get everything cleaned up before Days of Our Lives starts. But with all of the new characters on the show and new actors playing old characters, I really am not following what's going on, although there was a good cat fight between Sami and another character, whose name I don't know, in the first 5 minutes of the show. Roman Brady, played by an actor who used to play another character on the show named Chris Kosicheck 20 years ago, arrests his brother Bo Brady, for reasons which are not clear to me, in the final scene! Must remember to tune in tomorrow.

I fill out my Pegassist journal with the date, time, dose and injection location and on Page 15, under "How I'm Feeling," acknowledge that Week 1 was an Okay Week. Two down, 22 left, 1/12 of the way done.

10/20/06 - At 5PM yesterday I realized that in all the excitement of managing to do injection #2 all by myself, I've forgotten to take my 2PM thyroid medicine, my 4PM Nexium and my anytime Potassium pill! Today: if this week is anything like last week, this will be my day for running errands, food shopping, and getting ready for a slightly achey weekend.

10/21/06 - As it turned out, all I was able to do yesterday was return one item to the cash register nearest the door at Pennys' then go food shopping. There was a long walk from where I parked the car to Pennys, fortunately, they let you return anything at any register, don't make you take it back to the department where you bought it. I'm feeling like crap 2 days post injection, more arthritis-like than flu-like symptoms, but at least I know that I must have done my injection properly. Actually, any time I don't feel like crap, I start to worry that the Pegasys must have worn off! I ended up taking 2 tylenol last night, 2 at 7:30 this a.m., and 2 more about 8 hours later.
How long does it take 2 tylenol to work in a person who has taken virtually NONE in the past 8 1/2 years? Twenty minutes!

10/22/06 - Took 2 more tylenol @ 9:30 a.m. and am doing OK. Support from the Hubby - virtually none. He went to his uncle's house at about 5 yest. pm to fix his computer, ended up staying 5 hours, thereby killing our plans to go out to dinner. I ate 1/2 an avocodo, some canned peaches, some cheese and some figs myself. His dinner, cooked by his aunt was not that much better: canned tuna and pasta w/sauce from a jar and a vegetable stir fry. Today - I was up at 7:30, he slept till 9. I expressed an interest in going to a movie, even one of his chosing. But, after an exhausting a.m. checking his email, he's now, at 2:PM, taking a nap - in bed.

10/23/06 - Difficulty sleeping last night, mostly because I went to bed hungry and my stomach was acting up. Took a Rozerem (or however it's spelled) my PCP gave me at 1:AM. US tv commercials for this new sleep aid show the insomniac's dreams (Abe Lincoln playing chess with a beaver or otter) talking to him. I don't think I got more than 3 hours sleep and Abe Lincoln did not appear to play chess with me. Almost called out of work sick today, dreading a staff meeting that had been scheduled for this afternoon. Dragged myself to work anyway, then my boss called me to say he was sick, staff mtg. postponed indefinitely! Without my boss on my case today, I should have all day to figure out how to fill out a FMLA form, then fax it to my GI dr., as obviously he can't figure out how to fill it out.
Abe, I hope to see you tonight.

First Injection

2006-10-13T09:44:00.000-04:00

I did it!

After waiting in the doctor's office for over an hour to pick up my medications and have PA give me my first injection, I realized I didn't want to do (must hate waiting more than injections) that every week.

So, when my PA finally came in I told him I wanted to do it (injection) myself. He brought out a pillowcase full of my medicines & supplies - literally - I had to take a paper pillowcase off a pillow on an exam room table to put it all in, then he washed his hands, I washed mine, he suggested I do a practice saline injection, I declined. A brief standoff/staredown match ensued, then he decided I could watch him do one on himself, so I did that, then he talked me through a real one.

Did not feel a thing, having ample fat in the gut.

He wrote out a bunch of lab slips and a schedule for lab work. If I'm not anemic now, I will be after all these blood tests!

Carried my load of 11 remaining syringes, 2 bottles of riba pills, a cute little Pegasys cooler kit for traveling, which will make a great lunch cooler, sharps container, miscellaneous reading material, etc. down to my car, looking a bit like Santa Claus, without a red outfit.

Stopped for gas (petrol) on the way home - discovered I could not find my ATM card, which I last used at 3:22 PM on way to doctor's office to get cash. Frantic search for card in wallet, pocketbook, car, an a-hole pulls up behind me at the pump and says "Lady, if you're not gonna get gas, move your bleeping car," gave up search for card, forgot the gas.

Stopped next at produce store that had 12% fat Russian yoghurt the last time I was there - they don't stock it anymore. Raced home to call my bank and cancel my ATM card, fortunately no one had used it, then found the highest fat item in my refrigerator - some 5% cottage cheese, and took 2 ribas with that. Then my husband comes home with food for dinner, including pre-cooked sweet potatoe caserole that has a higher fat content (9%) than the cottage cheese had, so I ate some of that.

2 3/4 hours post injection: feeling no different than before and settled in front of the TV, with an extra blanket and wearing my winter jammies, as it's supposed to be cold tonight.

Fell asleep before the end of Grey's Anatomy - 2nd week in a row - good thing they show repeats on Fridays - slept as well as women my age sleep.

Next day, today: Woke up today with Edy's Grand Ice Cream and butter as the high fat items in the fridge. Chose to eat 2 slices of 9-grain bread with lots of butter as my high fat item, ate one slice, took 2 more ribas, ate the other slice , then drank a half a cup of coffee - I know, I know, but I just can't give it up - and am now sipping water.

PA called with my viral load from last blood test - 121,000 - not too high, but about twice as high as it was 8 months ago. Think I'm starting treatment just in time.

Other numbers:
WBC 6.8
ANC - wrote down the % not the # - 67.4%
Plt - 291
HgB - 14.1
HcT - 40.7
ALT - 44
AST - 45
Forgot to write down the rest, but TSH a little hyper - PCP already told me to decrease Levoxyl to 6/week, skipping Sundays.

Todays goals: Annual Mamogram @ 3PM, find Russian 12% yoghurt - can't eat ice cream in the a.m!

All things considered: the worst thing that happened to me yesterday was losing my ATM card, now I'm going to have to write checks if I need cash for the next 5-7 business days, until I receive my new one!

So far - have not needed to take any Tylenol.

uncertain the non-virgin - does that make me an interferon ho?

10/18/2006 update - never noticed b4 today, there is a slight incline from where I park my car to my office. Then 6 steps 2 get into the bldg., and another 18 to get up to my floor. Only my 6th day of treatment and I want nothing more than my PA to fill out my Family Medical Leave Act form already and get it back to me, so I can take it to the company doctor and get this "time off for a serious medical condition" thing set up, and maybe work 1/2 days instead of full days. Oh, and one more thing I want - I'd like a handicapped parking sticker, so I can park in the handicapped spot much closer to my building and not have to walk up that incline!

I hate the US Medical Industrial Complex!

2006-09-29T16:45:00.000-04:00

Went to my GI dr. apt. today. Was told that the GI dr. had an emergency - they called and left a message for me - on my home phone!

Do you have my work phone #?

Yes, but we thought you'd be at home (they didn't think).

So, I saw the Physician's Assistant, (did I mention that I drove from my office to the doctor's office, b4 getting out of the car, did a little pre-check that I had all my forms: referral form, Family & Medical Leave Act Form, purse with the $25.00 co-pay....my purse...where's my purse...not in the front seat...not on the floor...not in the back seat...must be back in my office, unless I put it on top of my car when I got in and it flew off. Don't think I did that. At this point it's 11:17 and I'm early for a 11:30 appointment. Frantic 3 mile drive back to my office, parked at a meter without putting money in, (because all of my money is in my purse) ran in the building and up the stairs, unlocked my office and there it is, under my desk where I left it. Very fast 3 mile drive back to the doctor's office where I arrive at 11:37, all is good- no tickets, no accidents, better parking spot than I had the first time.)

Well, Mrs. Certain, the PA says, you have anti-bodies for Hep B and have Hep C.

(Tell me something I don't know, I scream silently to myself.)

I know, I tell him, I've known this for over 8 years and I'm ready to start treatment now. He then reads through 8 years of GI history to confirm that.

Have you had a biopsy?

Yes, July 7th,

which induces another flip through the chart. Well, not too bad, not too much damage. Well, you'll need some blood tests.

I had them last week. He looks through the chart and finds the qualitative test, but not the quantitiative test.

That's impossible, I say, still holding it together, the first lab I went to couldn't figure out the diagnosis code for the quantititve test, so I went back to the place I went earlier in the year and they did that test.

He asks the nurse to call the 2nd lab and they fax over the report. (I should also mention that the second lab test last week caused a bruise on the inside of my arm that is roughly the size and shape of Manhattan - bygones.) They fax over the report and they too did the qualitative test!

He writes another lab slip for me and says I need another blood test to get the starting viral load #.

He also tells me I need a hepatitis A shot before they'll treat me. I'm "lucky' I had Hep B, or I'd need a shot for that too.

Oh, and I also need to see an opthamologist and have my eyes checked before I start treatment!

Is there any reason the doctor couldn't have told me all this in July. The PA doesn't know why the doctor does (or doesn't do) what he does (or doesn't do).

Oh, and I'm only going to be getting 600 microthingys of Pegasys and I question that, he reads the pegasys guidelines on type 2 and says, nope, 600 thingys, that's all you're getting, end of discussion. He'll start the pre-authorization for that and the medicines will be sent directly to the doctor's office. (You tell me the doctor's office is not getting a piece of that action and I have a bridge I'd like to sell you, it's in Brooklyn.)

I call my primary doctor to try to schedule a Hep A shot. they don't stock this, tell me to get it at a pharmacy and bring it Tuesday afternoon.

Raced to another lab - same company that did the 2nd test last week, different office and hopefully gentler phlebotomist. They look through the same book the 2nd lab looked through last week, and put down qualitative on my form and ask me to sign it. By this time, I know enough to look at the form before signing it. They re-do the lab slip and finally I see quantitiative and sign. By this point my veins are cowering an inch below my skin, but the phlebotomist finds a vein on only the second try.

On to the pharmacy to order the Hep A vaccine, where the pharmacist calls my drug insurer for authorization and finds it's not a covered item. I get on the phone with the drug insurer, explain why I have to have it, and the answer is still no, not a covered item. The pharmacist tells me its about $90 and they can have it for me on Tuesday. Fine, I think, that's one way to solve a problem - throw money at it. (I'll write a letter to the CEO of my drug insurer later, when I have the energy.)

Race home because my cell phone battery is going low.

Next issue - finding an opthamologist whose office is open at: by this time 2:30 on a Friday, who accepts my insurance and can get me an appointment next week. I open the phone book to the "O" section, close my eyes, my finger lands on someone's name, I call the number and - Yes, Virginia, there is a Santa Claus! - someone answers and schedules me for an appointment on the 5th. I'll need a referral from my PCP of course.

Call my PCP's idiot referral person and give her all the information I need to have the magic referal piece of paper ready for me Tuesday, when I have my Hep A shot. Try to throw a little sniffle into my voice, so maybe she'll pity me - ordinarilly referral forms take 3 days, which means if it's not ready Tuesday, it will be ready Wednesday or Thursday morning at worst. Wait - Thursday is too late - it has to be ready by Wednesday, that's the 5th...no, it's the 4th, never mind.

Collapse on the sofa, and I really want a beer.

Of all that happened today - I am the most concerned about the 600 units of Pegasys dosage - could this be right for a type 2, or is my PA an idiot?

I think I'm going to try to take a nap.

This is all a big conspiracy against me starting treatment when I want to start and being done in time to go to Captiva Island, FL for a wedding in April.

(c) 2006 uncertain4sure LLC

Confession

2006-09-27T18:43:00.000-04:00

I have a confession to make.

I got a tatoo a few years ago, the day the Columbia space shuttle exploded, guess that was 3 years ago. This was after I knew I was HCV +. The tatoo place was very clean, the tatoo artist wore gloves and a mask, all of the needle equipment came out of sealed manufacturer's bags. The subject of me having HCV didn't come up. I'm in the tatoo shop and the radio breaks to a special announcement from Dubya, saying the Columbia is lost, as if I didn't see it break up when it entered the atmosphere on TV 5 hours before that! Not that his announcement made me decide to do it, that was just the day I did it.

Why did I do it? My husband and I were on vacation, I was bored, he was skiing, I saw a tatoo shop, the rest was history.

Then, about a year and a half ago, I decided I didn't want it anymore, so I went to a doctor and started laser removal. I've had 9 treatments so far, and it is still visible. I'll probably need 4 or 5 more to completely get rid of it. The doctor doing the laser removal wears gloves and goggles, and I wear goggles as well. The nurse who puts the dressing on afterwards wears gloves, too. The subject of me having HCV didn't come up.

Why am I having it removed? I wasn't as proud of it as I thought I'd be. It's on my ankle, and I work for a stuffy company that doesn't encourage visible tats. I haven't worn a skirt to work, except in the winter, when I've occasionally worn a skirt with boots, since I got the thing. I think if I had it in a less visible place, I'd have kept it.

What is this all costing me? - you don't want to know! $125 for having the tattoo done in the first place, a lot more to remove it.

What is the point of this confession? I don't know - maybe to further explain my name here

uncertain -

- only because I thought "basket case" would be an insult to the women in South Carolina, and others around the world, who make a living weaving beautiful baskets.

Oh, there is another point - this pre-treatment brain fog is brutal! Can't wait 4 it to go away when I start tx - my husband thinks my plan to start treatment is just a "whim," much like my decisions to get a tatoo, then get rid of it were whims.

(c) 2006 uncertain4sure LLC

Two for One

2006-09-17T18:37:00.000-04:00

Started as a blog to document my fight with HCV, this can serve double duty (2 for 1) as a diary of a marriage going down the crapper.

My husbands latest complaints: 1) I never talk to him, never initiate a conversation. 2) I interupt him constantly when he is talking.

My side: 1) I have nothing interesting to say to him. I work at a boring job, have few interests, and we have little in common. 2) He never shuts up. Since he never shuts up, I never know that he's not done speaking, so if I do say something, it's always an interuption of what he's saying. I'll admit that I do interupt him at times - when he's wrong (and my memory is better at his for details - it's a proven female phenomenom), when I've heard what he's saying before, when he's boring.

He is a person who will read the instructions on how to assemble a new coffee-maker aloud to me and expect me to listen to them. If he is assembling the coffee-maker and I'm not helping, why do I have to hear the directions? If I say anything, I'm interupting, if I walk away, he'll tell me not to walk away when he's speaking.

I really don't need to know how to put together the coffee-maker if this is a one-person job and he's doing it, all I need to know is how to operate the thing. So, now despite my decision not to say another word to him for the rest of the day, I'm going to have to ask him where he put the directions to OPERATE the new coffee-maker, if I want to set it up to brew coffee automatically at 5:45 a.m. tomorrow.

Or, maybe I won't ask him and I'll just not make coffee for us tomorrow, either by setting up the machine tonight or by turning it on tomorrow, and instead I'll stop at McDonalds' on my way to work and get a "Senior Coffee" for $.52. (Getting McDonalds' Senior Coffee (which is actually a Small Coffee) for $.49 plus tax is the only benefit I've seen so far for being 55.)

Which would you do?