Tuesday, December 1, 2009

Some downs, some ups

Yesterday when I got my blood drawn at the clinic, the nurse asked if I thought I needed any "products." I said no. I've been feeling fine the past week and even managed a few short walk-runs (and I mean short). My legs felt a little more bouncy.

So I was unpleasantly surprised when Melissa said my hematocrit was 22 and I needed blood. My platelets – up to 33 last week – were back down to 20, but I could get away without a transfusion. Dr. Alyea came in and said that since I felt fine and looked good, I could get away without a blood transfusion too.

In the "if it's not one thing it's another" department, they said my liver function numbers had been increasingly higher the past several weeks. I don't know anything about liver function, but it turns out that higher numbers are not good. Dr. Alyea said it was probably a sign of more graft-versus host, and he increased my dose of prednisone from 10 mg. a day to 20. I had already been taking 20 and then had cut back to 10. I am also increasing the Prograf, in hopes that the higher dose will help me be able to decrease the prednisone soon. Sorry if this is confusing. I have just been looking at my pill boxes and finding it a little confusing too.

Imagine puffy cheeks here. Actually, puffier, because I already have a bit of that chipmunk look.

He said he thought that maybe the liver problem was contributing to the lower counts, and that he was "very optimistic" that this would all work itself out. He also gave me a little talk about falling asleep at the wheel, having learned about my mishap on the way home from Philadelphia when I fell asleep, ran up on the curb and got two flats.

It would be terrible if I hurt myself, and super-terrible if I hurt someone else, he said. Bottom line: stay well-rested.

I wasn't well-rested that day. I knew I had to get up early (OK, 6:30 isn't early for most people, but it is for me), and I vowed to get in bed by 10 or even 11 on Sunday night. But I get that second wave of energy and I keep doing things. Our friends Jim and Jane are looking for a small rescue dog, and they don't have a computer. So Sunday night I went "off task" and looked at Petfinder.com to help them find one. Jane told me they were fine just reading ads and checking through word of mouth. But I did it anyway. WHY? No good reason. Then all of a sudden I'm moving laundry, finishing the morning's forgotten paper...and doing who-knows-what...and before I know it, it's 12:30 a.m.

When the alarm went off in the morning, I could hardly move. I called Meryl and she did the one, two, three....get UP! with me.

Anyway, on the way home I was going to take a nap at Diane's, but I had had a quick lunch with Margaret, and then gone back into the clinic to talk to a financial aid advisor about problems with my insurance. It was raining and already getting dark around 3 p.m., so I thought I'd just push on through. After about 15 minutes I realized I couldn't do it, so when I pulled into the Starbucks parking lot in Waban, I pushed my seat back and promptly konked out. After a power nap of about 20 minutes, I was fine. I went in and got my strong coffee and headed home with no problem.

When I stopped at a store near home to do some quick shopping, I ran into an acquaintance who asked how I was doing. I told him that overall, things looked good. He smiled at that. Then he said, "Well, at our age we're all pretty much looking at the end." He's a little older than I am, but still, I don't consider any of us baby boomers as being close to the end. And this guy looks great. Love that sense of humor.

In the car, I called Ben for some other reasons and ended up talking about the appointment. I told him Dr. Alyea had said he was "very optimistic," and that although that sounded pretty good to me, I wanted certainty.

Ben said Alyea's words were terrific and the best anyone could want. "You can't say anything better than that," he said. "I'm looking at my clock and it says 5:51. I am very optimistic that it will soon say 5:52. But can I guarantee it? No. Nobody can guarantee what will happen next. So forget about it!"

Back home, I made dinner and then tried hard to eliminate unnecessary projects. I did a little better than the night before, getting to bed before midnight. I guess every little step helps.


Paula said...

Ronni, Ronni, Ronni,
Keep your mind at home
on these doctor trips!

Your body is amazing and has proven it time and time again.

Jim said...

Tough Girl Ronni,

Keep taking good care of yourself and you'll be running soon!


Jonny said...

The day you have a "chipmunk look" is the day Cindy Crawford gets inducted into the fat farm hall of fame.

You're like me...I need an alarm clock to tell me to go to bed, then I can get up on my own.

Dicipline... yuck.


susiegb said...

Well Ronni, I must say - I'm a baby boomer, and I'm certainly not 'looking at the end'!! And I've had/have a life-threatening disease (NHL)!! What's his problem?!!

When I think about it (not often) my future life goes on and on down some gently twisting path and off into A distant future which is many many years away!!

And yes, 'very optimistic' is wonderful to hear from your doctor, and probably the best any of us could hope/expect! Really we all know that there's no certainty in life other than this minute we're living right now ... :)

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donna said...

Once again, a truly insightful bit of writing. Great comment from your doctor. Little steps - you've hit a lot of speed bumps, but you're getting there. It is kind of amazing that your friends don't have a computer. In this day and age that sounds like not having electricity or running water. Get your rest and keep looking forward. Love you!

PJ said...

I really admire your ability to power nap,something I could never do. It seems like they're being really conservative with blood transfusions at Dana-Farber, going by symptoms rather than numbers. There's a new doctor there who's studying the effects of iron-overload on transplant recovery and overall survival. I'm not sure, but I think the excess iron gets stored in the liver, which may explain your elevated liver numbers.

pam said...

Hear Ye, Alyea! yea, as in yes, -- and listen to the sound advice of your wonderful first-born...you are our Runder-Woman, filled with life and a long road ahead, may the road rise up to greet you, dearest Ronni, and i know it will, and brings a bright horizon...

Meryl Fingrutd said...


Maybe the key to all this is "balance"- you run a little, you rest a little, you go again and rest again etc. And don't let your ego get in the way (i.e. no need to further establish that you are an amazon woman).


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