...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.
01 September 2010
24 August 2010
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.
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.
04 June 2010
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.
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.
30 May 2010
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.
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.
26 May 2010
Day 86
Two weeks until Day 100... A significant milestone I guess, but primarily I'm excited because I think they'll remove my central line. I want to be able to shower like a normal person (you don't want to know how long it's been since I've washed my hair, albeit there isn't much to wash).
Last night and tonight I've had terrible insomnia, even after taking my Ambien and Ativan. I was up until 0600 or 0700 this morning, and now it's 0154 and I'm still wide awake.
I saw a PA today in clinic. My counts are up a little, something like:
Hemoglobin 11.1
Platelets 77
WBC 3.7
|Neutrophils| 1.8
Creatinine 1.38
My mass is down to 83kg (~180#). It's definitely noticeable in my legs, they don't look very sausage-y anymore except around my ankles and feet, exactly where the neuropathy pain is. I haven't been wearing my compression stockings much and even at night I don't seem to be retaining much water in the upper parts of my legs or body. I'm still on the diuretic, so I just need to keep hydrated as the last of the extra fluid comes off.
My neuropathy pain is still constant and severe. I've found that one of the painkillers I have left over from my lung surgery (I pop two 500mg acetaminophen/5mg Vicodin hybrids) will take the edge off the pain and make walking easier for about 4-5 hours. I talked it over with the PA today and she was fine with me taking it. She also doubled my dose of Gabapentin and prescribed a Gabapentin gel to rub into my feet. I hope it brings some more thorough relief. Even with the partially effective painkiller my feet are still miserable. It wears off so fast and doesn't help me at times like when I sleep. If I have to get up during the night to use the bathroom, for example, walking is so impossibly painful I crawl to to the toilet and back on my hands and knees. Trying to walk brings such excruciating pain my legs will give out and I usually fall to the floor, which is how I got the brilliant idea to crawl in the first place. Strokes of genius come in such strange packages sometimes...
On the plus side (I guess) I took a pair of crutches from my parents' house while I was home this weekend, so if I have to go mobile for an extended period of time it is a little easier. I should say faster, not easier. I can shuffle much more quickly on the crutches than if I just walk freestyle. I also received a handicapped parking tag for my car (woo close parking!). I refuse to let this pain keep me from living my normal routine (ie grocery shopping). I'm glad I have at least a few options - painkillers, crutches, disabled parking - that make it possible, even if still painful, to do what I need to do to stay independent.
Plus now, with a disabled tag, I can park at meters and don't have to put in quarters!
My next appointment is Friday. The PA was concerned that my creatinine was up a little (I think it's the diuretic's fault, since there's such little excess fluid left. That's why I need to watch my hydration and keep my kidneys happy). My blood pressure has also been elevated since I stopped the amlodipine. If it is still up on Friday they plan to add another anti-hypertensive. I thought she should have done it today, but the PA insisted we wait. So I guess we will wait.
Last night and tonight I've had terrible insomnia, even after taking my Ambien and Ativan. I was up until 0600 or 0700 this morning, and now it's 0154 and I'm still wide awake.
I saw a PA today in clinic. My counts are up a little, something like:
Hemoglobin 11.1
Platelets 77
WBC 3.7
|Neutrophils| 1.8
Creatinine 1.38
My mass is down to 83kg (~180#). It's definitely noticeable in my legs, they don't look very sausage-y anymore except around my ankles and feet, exactly where the neuropathy pain is. I haven't been wearing my compression stockings much and even at night I don't seem to be retaining much water in the upper parts of my legs or body. I'm still on the diuretic, so I just need to keep hydrated as the last of the extra fluid comes off.
My neuropathy pain is still constant and severe. I've found that one of the painkillers I have left over from my lung surgery (I pop two 500mg acetaminophen/5mg Vicodin hybrids) will take the edge off the pain and make walking easier for about 4-5 hours. I talked it over with the PA today and she was fine with me taking it. She also doubled my dose of Gabapentin and prescribed a Gabapentin gel to rub into my feet. I hope it brings some more thorough relief. Even with the partially effective painkiller my feet are still miserable. It wears off so fast and doesn't help me at times like when I sleep. If I have to get up during the night to use the bathroom, for example, walking is so impossibly painful I crawl to to the toilet and back on my hands and knees. Trying to walk brings such excruciating pain my legs will give out and I usually fall to the floor, which is how I got the brilliant idea to crawl in the first place. Strokes of genius come in such strange packages sometimes...
On the plus side (I guess) I took a pair of crutches from my parents' house while I was home this weekend, so if I have to go mobile for an extended period of time it is a little easier. I should say faster, not easier. I can shuffle much more quickly on the crutches than if I just walk freestyle. I also received a handicapped parking tag for my car (woo close parking!). I refuse to let this pain keep me from living my normal routine (ie grocery shopping). I'm glad I have at least a few options - painkillers, crutches, disabled parking - that make it possible, even if still painful, to do what I need to do to stay independent.
Plus now, with a disabled tag, I can park at meters and don't have to put in quarters!
My next appointment is Friday. The PA was concerned that my creatinine was up a little (I think it's the diuretic's fault, since there's such little excess fluid left. That's why I need to watch my hydration and keep my kidneys happy). My blood pressure has also been elevated since I stopped the amlodipine. If it is still up on Friday they plan to add another anti-hypertensive. I thought she should have done it today, but the PA insisted we wait. So I guess we will wait.
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