We just drove in from Houston and are both very tired.
I learned on Tuesday that Dale
Inouye passed away and have been struggling over the news. For those of you who are new to the blog, Dale was my inspiration and my hero. He'd been fighting leukemia from the age of 2 and though we never met, I followed his blog when we were introduced to it shortly after I was diagnosed. When I felt overwhelmed, I'd think of Dale who fought for seven years and always seemed to be smiling through it all.
If you'd like to read about Dale's fight go to
http://inouyeboynumba3.blogspot.comI know I promised an update tonight, so here it goes:
I met with my transplant doctor on Wednesday after having blood work done and she reassured us that I was doing fine. My white blood cell count was down from last week's reading of 2.5 to 2, but my absolute
neutrophil count had increased from 0.6 to 0.7. This situation isn't unusual and my doctor has seen it in other patients. She explained that it could be the result of one of three things.
1.) Chronic
GvHD--I am currently suffering from a bout with this and I have evidence of elevated numbers of
eosinophils in my blood which are a strong indicator of a
GvH flare up. As if the
rashy, itchy, blistering skin didn't give it away.
2.) A build up of
Bactrim in my system. I've been on a steady diet of
Bactrim since my days as a leukemia patient and it's not unusual for it to cause a severe drop in white blood cells. Why now, you ask? I couldn't really say, but I have been taking a healthy amount of
bactrim for more than a year as a prophylaxis against pneumonia and it has steadily been building in my system. As a side gripe...wouldn't you know the month I stop taking antivirals
I get the flu and a cold. I don't want to tempt fate, I'm just saying.
3.) A low grade infection that hasn't manifested itself in an outwardly physical manner yet. I wouldn't be surprised. To a vagabond virus or a gaggle of misguided bacteria, my new immune system probably looks like an easy mark. I imagine the stem cells are rather like college freshman trying to navigate a huge campus on their first day of classes. You remember, trying to look desperately adult while you run across parking lots surreptitiously checking the badly printed map clutched in your sweaty palms.
LSU is a big campus and it's not unusual to have classes at opposite ends of the campus with only 10 minutes to sprint for your life. I'm a 5'2"(almost) woman in her early thirties with a new immune system designed for a new born. I'm sure the little stem cells get a bit overwhelmed by their new environment.
There is still some concern over my
GvH of the skin. It's never really resolved,
especially on my hands. I was surprised to find out that it's infiltrated my nail beds and that I'll probably lose my nails. The good news is that nail prosthetics actually exist. Could you imagine putting on 10 little fake nails everyday? The debate continues over whether to start me on systemic steroids to reboot my immune system or continue trying to treat the
GvH at a local level. There's a real danger if I'm placed on oral steroids that the
PTLD(
pre-lymphoma) will come back with a vengeance since my immune system will once again be severely compromised, giving the
EBV that I carry a chance to knock me out all over again. Freaking mono. At 18 I never would have believed that it could lead to re-occurring tumors all over my body fifteen years later. I've done that once, thanks very much.
Dr.
Kebriaei consulted with Dr.
Hymes(my dermatologist) and the consensus was that I needed to be re-evaluated before we made any decisions. There are a few options open to me before I have to go on oral steroids. Vanity be damned, but I could care less if my fingernails fall out if it means not having to take a chance on a second cancer that I've already experienced once before. I also seriously doubt that I would wear fake nails to hide the fact. Let people stare if it comes down to it--I'll just be happy to be around to deal with it. I'll see Dr.
Hymes in two weeks and I'll also have a follow up with Dr.
Kebriaei.
I had to have a skin biopsy because of my skin
GvH. Silly me, I just thought it would be a skin scraping this time around. I should have known better when the new PA walked in loaded down all sorts of neat instruments. I got a shot of
lidocaine in the back--feel the burn--and a respectable punch of skin taken from my upper shoulder. This required a very small number of stitches to close up and as of this very moment just feels like a minor wasp sting. Lucky Dr.
Hymes gets to take the stitches out when I see her next. :)
In the mean time, I have to see my local oncologist next week to have blood work done. My transplant doctor decided to have me stop taking
bactrim and gave me a
neupogen shot to stimulate my
neutrophil production. I was scheduled to stop taking
Bactrim in May so this is like getting a half day off from school. It's a really big pill and it does interesting things to my digestion, so I won't be sad to see it go. I've had a few bone pains from the
neupogen shot, but it's always been manageable. The hope is that my immune system will start behaving and start cranking out the appropriate cells. I'm still
neutropenic, but I've been given the go ahead to eat fresh fruits and vegetables.
Just to test the waters, I asked when I would be allowed to have all of the delicious soft cheeses that have become contraband due to my weakened state. Much to my surprise, most of my dietary restrictions have been lifted. I've been given permission to have the
occasional glass of wine or
Guinness. I can stuff my face full of brie and Maytag blue cheese without having to worry about any scary infections or reactions. You'll all think I'm crazy, but I got more excited about fresh fruit and cheese than a glass of red wine. I have yet to indulge in any of these things since we've been on the road for the last two days. Sushi and "raw" meats are still off the menu for another year or so. This means that I will have to wait a few months more before I can enjoy a lovely medium rare steak. I'll live
I saw my
opthamologist today for the
GvH of my eyes. She told me that my eyes look perfect and that I can cut back on
cyclosporine drops. I've been doing drops four times a day and it's really amped up my tear production. There are times when I'm lying down that my eyes just start to well up and shed tears as a result of my prone position. It's a bit of a
nuisance. I can go back to just dosing twice a day until further notice, or the rest of my life. Since my vision is still 20/15, I can not make a single complaint. Not having to track down reading glasses just to be able to read big print is a very welcome miracle. Now that I don't need reading glasses I managed to find the pair that have been missing since October. Luck and coincidence are fickle things.
It's just about 2AM here and I am exhausted and heart-sick. I'll let Chris fill you all in on the finer points of our visit tomorrow. Please say a prayer for the
Inouye family and my transplant buddy Leslie who has been stuck in the hospital these last few weeks fighting the good fight.
Among precautions that the scientists in the movie have to take is one that involves very intense UV exposure. They have to put a covering over their head and then are blasted with UV light for a few seconds until the top layer of their skin is turned to ash. All very dramatic, but you would expect that from a Scifi thriller. The actual "light box" is probably much more mundane. Think more of tanning bed and less of Bill Bixby sitting in an Incredible Hulk making gamma irradiator.
