Photos

The pictures are kinda washed-out.  The rash looks much more bright red in reality and there are large white blisters near my midline on both my front and back (they're hard to see in the photos).  I'm told eventually the entire rash will blister, pop, crust over, and peel off.

Since the antivirals I'm on are hard on the kidneys (go figure), I went back to the BMT clinic yesterday for lab work and to re-evaluate my shingles.  My creatinine came back at 1.53, which isn't great but acceptable.  The doctor started me back on Gabapentin (Neurontin), which should help with the generalized abdominal pain I have.  She also switched me to a Fentanyl patch.  It'll provide constant pain medication instead of having to take pills every 3 hours.  I was started on a low dose and so far all it seems to do is make me drowsy.  I'm still taking Dilaudid every 4-5 hours to manage the pain.  Between the two it covers it well, but being on strong narcotics isn't ideal, the combination of the two basically leaves me stoned.  It's better than being in pain, but I'm hoping Tuesday, when I meet with Dr. Oran, we can work something better out so I don't spend my days in such a dug-induced fog.

Meet the Family

Say hello to Baxter.  IRael and I adopted him from the Humane Society on Saturday.  He's an 11-month-old black lab mix with a tail that is curly like a spring.  He is such a sweetheart and will climb over anything to come cuddle by your side.  It's been fun learning what he likes and figuring out his personality.  He came to the Society as a stray, so he's like a blank slate - they had no background information on him, but it's apparent he's been neglected (you can see in the picture some scratches/worn fur on his nose, we think from an over-tight muzzle).  He doesn't quite know how to react to some of his new treats and toys, although he's quickly learning they're his to be enjoyed.

He is incredibly well-behaved, loves everyone he has met, and plays well with other dogs at the park.  IRael and I are lucky to have found such a sweet dog and are glad he seems to be adjusting well to his new home.  I love having an animal around again, his companionship over just the past few days has been a boost for my sometimes lonely spirits.  We're looking forward to many great years with such a handsome, loving canine.

Call Me "House" Kempfert....

...because I'm covered in shingles.  D'oh.

So Monday I woke up with a small patch of irritated skin on my right side of my belly.  I didn't think much of it.  Yesterday I woke up feeling ill and the patch had grown and become very painful, but I still didn't think much of it.  Today I woke up, the patch had grown more and was still extremely painful, even without touching.  After much nagging (thanks IRael...) I called my nurse and she recommended I come get it checked out.  Turns out I have shingles.

Shingles is caused by the Varicella-zoster virus, the same that causes chickenpox.  I had chickenpox as a kid, and after the body fights off the virus the first time it doesn't completely disappear.  Instead it lies dormant in nerve endings, waiting for an opportune time to re-emerge.  If it does it isn't called chickenpox, it's called shingles.  So it is quite common for it to appear in patients who are immune compromised.  It causes painful skin lesions, flu-like symptoms, and, in extreme cases, organ damage, blindness or deafness (if it affects the nerves in the eyes or ears).

I've never had my skin hurt like these shingles lesions hurt.  It feels like stabbing knives all along the affected area, and that's when there is no contact.  Wearing a shirt is almost unbearable, such little pressure increases the pain dramatically.  The doctor I saw today started me on an anti-viral to combat the infection and gave me a strong painkiller to help relieve my suffering.  I've had an upset stomach all day too.  Unfortunately she said it will probably get more uncomfortable before it gets better, which can take two or three weeks.  There isn't much else that can be done. They can give me different painkillers if the dilaudid doesn't work.

My appointment with Dr. Oran yesterday was rescheduled for next Tuesday.  So I haven't heard any of my test results yet.

Lazy Summer

So it's been a while.  A lot has happened since my last post and yet not much has changed.  My Day 100 work-up in June went well - all my tests came back with favorable results.    Around that time my GVH flared again and has been trouble ever since.  Since I am post-Day 100, the GVH is now classified as chronic instead of acute, which doesn't mean much except for how it is treated.  At the end of June I began eight weekly infusions of 1200mg of Prednisone (steroids) in an effort to suppress my immune system (in addition to the 30mg I take daily).  Being on that much Prednisone is awful.  I would get my infusions on Tuesdays and for the next three days I could hardly sleep.  I would be restless, irritable, and have dramatic mood swings.  It has made my skin so fragile any bump or scratch produces a sore or blister that takes weeks to heal.  It causes me to retain water and made me chubby.  I've gained about 40 pounds since I started the eight infusions, I can't wear shoes because my feet don't fit inside, and my face is so round people don't recognize me.

The worst part of it is that it didn't work.  Last Tuesday was my last infusion and by that time all my symptoms should have resolved.  Yet today I still have GVH sores in my mouth, my hands and neck are red, and my eyes are constantly dry (a new symptom with chronic GVH).  Dr. Oran is concerned because of my lack of a response to treatment - such an intense steroid treatment typically does the trick but for me it hasn't.  We're going to wait at least a week to see how my body responds without the weekly pulses, but it looks probable that I'll require alternative immunosuppression to control my GVH.

It's disappointing.  The Prednisone was so hard on my body and the little relief I received was offset by the complications it brought.  I'm frustrated by how slowly I'm making progress.  Before having the transplant I had completely unrealistic ideas of where I would be at Day 100 or 6 months.  Even though my expectations of myself and my progress have been adjusted, it was a tough adjustment to make.  Day 100 was hard because I didn't feel as good as I hoped (expected) I would.  I was still fighting serious complications, which were common and normal and to be expected at Day 100, but I felt I should have been past that.  That my progress should be faster and I would breeze through recovery and return to my normal life in record time.  But that's not how it works, and that was a hard realization to come to.  And that's when I stopped writing my blog.

Now I've set more realistic goals.  People ask me how I feel, I don't say good.  I say alright, because honestly I have a lot of times when I feel like shit.  I have good times and can do a lot of what I like to do, but life is hard.  Recovery is hard.  It takes time.  And I've learned that I need patience.

Friday I have my six month biopsy and labs, then I'll meet with Dr. Oran again next Tuesday for the results.  I don't expect any surprises, but you never know until you know.  I'm not looking forward to the biopsy... ugh.

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.