Day 94

Hemoglobin 11.3
Platelets 101
WBC 5.3
|Neutrophils| 2.7
Creatinine 1.49

This week marked the one year anniversary of my diagnosis.  I found myself thinking not about how sick I was or debating my new quality of life, but rather how strong I feel now and how good my life is.  Other than this foot pain I feel healthy and my life and how I live reflects that.  I do have limitations and will for a while, but not forever.  And if this is where I'm at one year after my leukemia diagnosis with all the complications I experienced, nine months after a pneumonectomy, and three months after a bone marrow transplant, I have no doubt that in six months, or a year, or two, or five I will be stronger and healthier than I can imagine, and this disease and all that came with it will be nothing that could ever hold me back.

I met with a midlevel on Wednesday.  My counts are up (finally), which made me pleased.  She didn't have much to say.  The neuropathy is still unchanged, but the Vicodin and Gabapentin gel help with the pain and make the day bearable.

We decided that I should be evaluated by a neurologist to make sure nothing is being overlooked.  There is one neurologist at the U who specializes in neuropathy that is currently accepting new patients.  He sees patients at two clinics.  At his primary clinic his first available appointment is in February of 2011....no good.  The other clinic is at the U's pain management clinic and I can be seen around the end of July....not much better.  My doctor spoke with his nurse and, after explaining my situation, I was put at the top of the waiting list.  So if there is a cancellation I'll be the first to be offered the cancelled appointment.  So hopefully I'll be able to get in sooner.

So all this week I have not been sleeping well.  I've tossed and turned all night and it seemed like I was getting up every hour to go to the bathroom.  Well yesterday I'm looking at the pills in my pill box and realized I put my diuretic in the wrong boxes.  So instead of taking it in the morning and afternoon like I was supposed to I'd been taking it in the afternoon and right before bed.  That explains why I was up to pee so much during the night...  So I put them where they needed to be and slept great last night.  I thought it was kinda funny.

Monday I have a chest xray and my Day 100 bone marrow biopsy.  Ugh, I'm dreading it already.

Day 90

Hemoglobin 11.0
Platelets 73
WBC 3.9
|Neutrophils| 2.1
Creatinine 1.39

Friday I saw a midlevel.  She didn't have much new to say.  The neuropathy isn't any better, so we decided I should seek the opinion of a neurologist.  The hope is that he will have more insight into the cause of this pain and how to treat it.  All the BMT doctors tell me is that it is "common after chemotherapy," but I would like a more firm diagnosis.

My blood pressure has been up, so my Cozaar dosage was increased.  No other medication changes at this time, except for the prednisone taper.  As of Wednesday I'll be down to 40mg/day.  My next appointment is Wednesday.

Yesterday I drove to Rochester to see my brother.  I had the sunroof open the entire drive down...turned out to be a bad idea.  The sun was shining in onto the top of my head and my skin has freaked out.  It looks and even blistered (the big dark spot) like a terrible sunburn, but it doesn't hurt.  A bunch of my pill bottles say "You should avoid prolonged or excessive exposure to direct and/or artificial sunlight while taking this medication," plus GVH patients, I've read and been told, are very sensitive to sunlight.  Exposure to it can cause the disease to flare.  I guess I should have been more careful.

So I got a ball cap now that I'll wear when I'm out and it is sunny.  I need to find a big straw hat...

Yeah, that'd do.