So my edema has been worse the past couple days. As a result, I've increased the amount of Lasix I'm taking, which in turn has made the BMT doctors concerned about my kidneys. So they wanted me to come in today for a checkup. While there they performed a blood test that indicated my heart is under stress, similar to those in heart failure. My doctors wanted EKG and ECHO tests performed along with supplemental IV drugs to take off the excess water. They convinced me the best way to do this was for me to be admitted to the hospital. So I was.
Worst decision ever. Sure, I had my EKG and ECHO, but I spent the rest of the day sitting around not hooked to any IVs or receiving any treatment for my edema because today it is much better. I took all my medications as I would have at home (after lengthy explanations of my medication regimes.... they still don't have it right), but instead of being free I got to sit in a hospital room. It is so stupid.
On top of it all I'm on a low-sodium diet so I couldn't order anything I wanted off the hospital menu. Literally everything I tried to order had too much salt in it, I had to modify it somehow (read: had to make an already crappy meal even crappier).
We'll see what the EKG and ECHO results are, but the doctors had better have a treatment plan for tomorrow. Because after a day like today it needs to be damn convincing if they expect me to stay inpatient.
22 September 2010
20 September 2010
Complete with Velcro
Today I went and was fit for a pair of diabetic shoes. Hopefully I'll be able to better fit into these shoes than my current ones.
My edema has gotten worse over the past week, since the time I started taking the narcotics. I've upped my Lasix and have been wearing my compression stockings, but they're not much relief. The sooner the pain from the shingles goes away the sooner I can get off the narcotics and, hopefully, stop the massive swelling again.
My shingles sores have dried up and become crusty, now they just need to peel off. The rash is like one big scab. It's itchy as hell and still hurts but the narcotics keep me comfortable, even if I feel like every time I sit down I could fall asleep for hours.
Dr. Oran had her baby, a girl. Everyone is doing well as far as I heard, even though she was four weeks premature. Because she was so early her transition plan hadn't yet been determined, so now that she's out (probably until the new year) my nurse coordinator Carol is still trying to figure out which doctor will be taking over my case. It should be decided sometime this week.
The shingles is stable, my GVH seems to be stable, so I don't have an oncology appointment until next week.
My edema has gotten worse over the past week, since the time I started taking the narcotics. I've upped my Lasix and have been wearing my compression stockings, but they're not much relief. The sooner the pain from the shingles goes away the sooner I can get off the narcotics and, hopefully, stop the massive swelling again.
My shingles sores have dried up and become crusty, now they just need to peel off. The rash is like one big scab. It's itchy as hell and still hurts but the narcotics keep me comfortable, even if I feel like every time I sit down I could fall asleep for hours.
Dr. Oran had her baby, a girl. Everyone is doing well as far as I heard, even though she was four weeks premature. Because she was so early her transition plan hadn't yet been determined, so now that she's out (probably until the new year) my nurse coordinator Carol is still trying to figure out which doctor will be taking over my case. It should be decided sometime this week.
The shingles is stable, my GVH seems to be stable, so I don't have an oncology appointment until next week.
09 September 2010
Moldy... Old.... I'm gonna get something to eat!
Tuesday I was supposed to meet with Dr. Oran. However, since she is pregnant, she didn't want to see me because of the shingles. Shingles is contagious but the only at-risk populations are people who haven't had chicken pox, immunocompromised people, and pregnant women. So I met with another doctor who examined me and discussed everything with me, then went and discussed her findings with Dr. Oran, then came back with what Dr. Oran had to say - sort of like the game "telephone".
The three of us decided that it is still too early to tell if my shingles treatment is effective. More time is needed to see if new lesions are developing. Until then, I'll continue taking my antivirals and pain meds. We also decided that my GVHD has stabilized since discontinuing the prednisone pulses, which means we're going to try slowly reducing the prednisone I'm taking daily from 30mg to 20mg. My creatinine has slowly been climbing as well (it's been hovering around 1.5-1.6), so I'm also reducing the amount of Lasix I'm taking. That should help reduce the stress on my kidneys, as long as the edema stays under control (it's been a lot better recently).
All my tests from my six month anniversary came back normal/clear. There is no signs of leukemia anywhere and the marrow is 100% donor. Furthermore, all three cell precursors are present and producing cells (white blood cells, red blood cells, and platelets). The other genetic tests that were done all came back with favorable results. Finally, my lung x-ray was clear (no pneumonia visible).
My next appointment is tomorrow to check on the shingles. If there is no improvement or I'm still producing new skin lesions I will need to take different antivirals. I'm told, however, that these would need to be done IV which means I'd have to be hospitalized. Hopefully it won't come tot that.
The three of us decided that it is still too early to tell if my shingles treatment is effective. More time is needed to see if new lesions are developing. Until then, I'll continue taking my antivirals and pain meds. We also decided that my GVHD has stabilized since discontinuing the prednisone pulses, which means we're going to try slowly reducing the prednisone I'm taking daily from 30mg to 20mg. My creatinine has slowly been climbing as well (it's been hovering around 1.5-1.6), so I'm also reducing the amount of Lasix I'm taking. That should help reduce the stress on my kidneys, as long as the edema stays under control (it's been a lot better recently).
All my tests from my six month anniversary came back normal/clear. There is no signs of leukemia anywhere and the marrow is 100% donor. Furthermore, all three cell precursors are present and producing cells (white blood cells, red blood cells, and platelets). The other genetic tests that were done all came back with favorable results. Finally, my lung x-ray was clear (no pneumonia visible).
My next appointment is tomorrow to check on the shingles. If there is no improvement or I'm still producing new skin lesions I will need to take different antivirals. I'm told, however, that these would need to be done IV which means I'd have to be hospitalized. Hopefully it won't come tot that.
04 September 2010
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.
01 September 2010
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.
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.
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.
20 May 2010
Day 80
Hemoglobin 10.3
Platelets 61
WBC 3.0
|Neutrophils| 1.8
Creatinine 1.28
Not much to report from the doctor today. My counts have stayed approximately the same from Tuesday. I lost 3kg (about 6.5#), so the increased diuretic seems to be doing something. The neuropathy hasn't changed, but I wasn't expecting it to. I just have to tough it out until the Gabapentin begins to take effect.
Platelets 61
WBC 3.0
|Neutrophils| 1.8
Creatinine 1.28
Not much to report from the doctor today. My counts have stayed approximately the same from Tuesday. I lost 3kg (about 6.5#), so the increased diuretic seems to be doing something. The neuropathy hasn't changed, but I wasn't expecting it to. I just have to tough it out until the Gabapentin begins to take effect.
I don't think there will be any changes to my immunosuppression until Dr. Oran returns - that is unless my GVHD begins to flare. The doctor I saw today had no intention of doing something so bold without a damn good reason which I guess is ok with me. I just miss Dr. Oran already.
Since I don't have much else to say I thought it'd be fun to give you an idea of what my daily medication regiment looks like.
That's everything I take, sitting on the corner of my desk. Most are drugs, the larger bottles in back are vitamins, and the big tubs on the right are creams.
That's my weekly pill box. You can see how big it is with my hand in there. Those little boxes fill up fast, though.
These are the scheduled medications I take, the dose, the frequency, and the function.:
- Furosemide 60mg 2x daily - my diuretic
- Cozaar 50mg 1x daily - anti-hypertension
- Metoprolol Succinate ER 50mg 1x daily - anti-hypertension
- Ursodiol 300mg 3x daily - protects my liver
- Gabapentin 300mg 3x daily - anti-neuropathy agent
- Acyclovir 800mg 4x daily - anti-viral
- VFEND 300mg 2x daily - anti-fungal
- Prednisone 80mg 1x daily - immune suppression
- Rapamune 0.4mg liquid suspension 1x daily - immune suppression
- Azithromycin 250mg 1x daily - anti-bacterial
- Dronabinol 2.5mg 3x daily - appetite stimulant
- Calcitrol 0.25mcg 1x weekly - vitamin made by the kidneys
- Triamcinolone Acetonide Cream 0.1% applied 3x daily - steroid, fights dermal GVH symptoms
- Hydrocortisone Cream 1% applied 3x daily - steroid, fights dermal GVH symptoms, used only on my face and hands
- Lorazepam 1mg 1x daily - sleep aid taken at bedtime
- Zolpidem Tartrate 5mg 1x daily - sleep aid taken at bedtime
- Men's Multivitamin 1x daily
- Calcium 600mg with 250 IU Vitamin D 3x daily
- Organic Flax Seed Oil 1g 3x daily
I also have some prescription pain killers but I don't take them very often, so they're not included. That's thirteen different drug capsules/pills, three vitamins, two creams, and one liquid suspension. For those of you keeping track at home, it's a total of 37 pieces (plus the liquid suspension) going down the hatch every 24 hours (38 pieces on Sundays because of the Calcitrol). It's a greater number than if you were to add up the list above because my prescribed amounts sometimes require multiple pills. For example, my Prednisone comes in 10mg, 20mg, and 50mg sizes, so to reach a dose of 80mg I take one of each size, once a day.
And yes, I can recite the entire list from memory.
19 May 2010
Day 79
I saw Dr. Oran yesterday. She is concerned because my GVH has still not completely resolved. She said once you start treating GVHD, symptoms should completely disappear. Even after almost a month of treatment, however, I am still peeling and red on my hands, face, and feet. Although the symptoms seem to be minor, the fact that they're still present indicates to Dr. O that further suppression may indeed be necessary. She's hesitant to do so because the symptoms are so stable and don't cause me any discomfort. She says we can't just let it persist indefinitely, but she decided to wait some more before taking the next step. We're soon approaching the tipping point, however.
My biggest concern is the edema I still have in my legs. The swelling has also caused neuropathy in my feet. Basically it's sharp, shooting pain every time I put weight on either of my feet, and a dull ache while I'm sitting without weight on them. The pain has been so bad the past few days I've had trouble walking. Dr. Oran still thinks this is all caused by the GVH and complications from my medications. She prescribed something to help with the neuropathy, unfortunately it takes about a week to build up in my system before I'll notice a difference (assuming it will make a difference). Standard painkillers (acetaminophen, ibuprofen, narcotics, etc) don't relieve pain caused by neuropathy, so I have little relief, short of staying off my feet.
In addition to the neuropathy medication Dr. Oran increased my diuretic from 80 mg/day to a total of 120 mg/day. My next appointment is tomorrow. Dr. O is going to be gone for the next three weeks (d'oh), so I'll be seeing a different doctor during that time. I just hope it's not a different doc each time.
My biggest concern is the edema I still have in my legs. The swelling has also caused neuropathy in my feet. Basically it's sharp, shooting pain every time I put weight on either of my feet, and a dull ache while I'm sitting without weight on them. The pain has been so bad the past few days I've had trouble walking. Dr. Oran still thinks this is all caused by the GVH and complications from my medications. She prescribed something to help with the neuropathy, unfortunately it takes about a week to build up in my system before I'll notice a difference (assuming it will make a difference). Standard painkillers (acetaminophen, ibuprofen, narcotics, etc) don't relieve pain caused by neuropathy, so I have little relief, short of staying off my feet.
In addition to the neuropathy medication Dr. Oran increased my diuretic from 80 mg/day to a total of 120 mg/day. My next appointment is tomorrow. Dr. O is going to be gone for the next three weeks (d'oh), so I'll be seeing a different doctor during that time. I just hope it's not a different doc each time.
16 May 2010
Thank You!
Thank you to everyone who was at the benefit today and there with me in spirit. I am incredibly fortunate to be loved by so many people and would not be as healthy as I am today if not for your support.
Thank you, from the bottom of my heart.
Love,
Nic
Thank you, from the bottom of my heart.
Love,
Nic
11 May 2010
Day 71
Dr. Oran is pleased with the progress my GVH has made in the past week and doesn't believe further immune suppression is necessary now. Although the skin on my hands, feet, and face is still dry and peeling, my color "has improved" and the rest of my body looks clear.
The report on my ECHO won't be completed and reviewed by Dr. Oran until later this week, so I'll get a call. I weighed 90.0kg today, which is one kilo less than yesterday. She said the prednisone and GVH could be causing to the edema. Since the GVH is looking better I will start a ten-week taper of my prednisone tomorrow. This in combination with stopping the Norvasc yesterday and my week-long diuretic run should rid me of all this extra water, pending the ECHO. I went and bought thigh-high compression stockings today too...they were hard to put on. But I think they're gonna make a big difference.
The University of Minnesota pharmacies have been out of stock on the pill form of Acyclovir for months. Instead of taking a pill four times a day, I've had to take 20mL of it in liquid suspension. They received stock of the pill form recently, so when I got my refill today I received pills! I'm finally able to put it into my pill box instead of lugging around a jug of liquid form and an oral syringe. That's a lot less to carry. I'm excited about it.
My next appointment is a checkup on Friday. IRael and I will be out for the benefit Saturday, I hope everyone is able to attend!
The report on my ECHO won't be completed and reviewed by Dr. Oran until later this week, so I'll get a call. I weighed 90.0kg today, which is one kilo less than yesterday. She said the prednisone and GVH could be causing to the edema. Since the GVH is looking better I will start a ten-week taper of my prednisone tomorrow. This in combination with stopping the Norvasc yesterday and my week-long diuretic run should rid me of all this extra water, pending the ECHO. I went and bought thigh-high compression stockings today too...they were hard to put on. But I think they're gonna make a big difference.
The University of Minnesota pharmacies have been out of stock on the pill form of Acyclovir for months. Instead of taking a pill four times a day, I've had to take 20mL of it in liquid suspension. They received stock of the pill form recently, so when I got my refill today I received pills! I'm finally able to put it into my pill box instead of lugging around a jug of liquid form and an oral syringe. That's a lot less to carry. I'm excited about it.
My next appointment is a checkup on Friday. IRael and I will be out for the benefit Saturday, I hope everyone is able to attend!
10 May 2010
Day 70
I had two appointments today.
First I had an eye appointment. My vision in both eyes hasn't changed since my appointment a month ago. In the right eye this is ok, I can still see very normally. In the left eye I still have the large vision field blockage due to blood from the hemorrhage in my retina. When I wake up in the morning my vision is almost clear in the left eye (the blood settles as my head remains still as I sleep), but within an hour the blood gets stirred up, causing the blockage. The doctor likened it to a snow globe. The good news is that the damage has remained stable since my appointment a month ago and my ophthalmologist says there is no need for immediate surgical intervention. This is also good because since my blood counts are still unstable surgery on the delicate vessels in the eye would be very risky right now. Unfortunately this means I will have to continue living with the blockage for now. It's annoying, but the important thing is that further damage isn't occurring. My doctor also said this sort of hemorrhage often clear up without major intervention, so giving it time is the best course of action.
My second appointment was with the BMT clinic. Yesterday I went in to the clinic because I have been retaining massive amounts of water. When I was in clinic on Friday I weighed 71 kilos, on Sunday I weighed 92 kilos... That's like 27# of water weight in two days! My legs were so full Saturday night I could barely walk. So in order to bring some relief I was put on a diuretic (drug that makes you pee) and began taking frequent trips to the toilet. The doctor said it would take about a week to drain all the excess fluid off.
Being on a diuretic can cause major problems in the blood chemistry, so I have to go in daily and have mine checked. Diuretics also work by removing the water from the interior of the cells in your body, whereas the fluid I'm retaining exists in the space surrounding the cells. So the danger is that I'll dehydrate too quickly, only losing water from the cells' interiors, not the fluid from around the cells (that's the fluid I need to get rid of). So even though I'm full of water I need to drink lots of water, which'll just slow the process. Wrapping my legs tightly and elevating will help force the extracellular fluid into cells, which will keep them hydrated and allow the diuretic to remove the excess fluid. After two days I've noticed a definite increase in my comfort level (I don't feel so much like a water balloon anymore), but I still have a long way to go.
The million dollar question is why this happened. My kidney function is fine. Amlodipine, one of my blood pressure medications, causes edema. Rapamune, my immunosuppressant, also causes edema. But spontaneously gaining 27# of water due to medications I've been taking for weeks? My doctor today wasn't convinced. Unfortunately she's concerned that the cause is my heart. She told me sometimes after chemotherapy and transplant the heart can weaken, causing fluid retention similar to what I experienced. So tomorrow I have an ECHO study to test for heart failure. I also meet with Dr. Oran to discuss how my GVH is progressing. We'll see how it goes.
First I had an eye appointment. My vision in both eyes hasn't changed since my appointment a month ago. In the right eye this is ok, I can still see very normally. In the left eye I still have the large vision field blockage due to blood from the hemorrhage in my retina. When I wake up in the morning my vision is almost clear in the left eye (the blood settles as my head remains still as I sleep), but within an hour the blood gets stirred up, causing the blockage. The doctor likened it to a snow globe. The good news is that the damage has remained stable since my appointment a month ago and my ophthalmologist says there is no need for immediate surgical intervention. This is also good because since my blood counts are still unstable surgery on the delicate vessels in the eye would be very risky right now. Unfortunately this means I will have to continue living with the blockage for now. It's annoying, but the important thing is that further damage isn't occurring. My doctor also said this sort of hemorrhage often clear up without major intervention, so giving it time is the best course of action.
My second appointment was with the BMT clinic. Yesterday I went in to the clinic because I have been retaining massive amounts of water. When I was in clinic on Friday I weighed 71 kilos, on Sunday I weighed 92 kilos... That's like 27# of water weight in two days! My legs were so full Saturday night I could barely walk. So in order to bring some relief I was put on a diuretic (drug that makes you pee) and began taking frequent trips to the toilet. The doctor said it would take about a week to drain all the excess fluid off.
Being on a diuretic can cause major problems in the blood chemistry, so I have to go in daily and have mine checked. Diuretics also work by removing the water from the interior of the cells in your body, whereas the fluid I'm retaining exists in the space surrounding the cells. So the danger is that I'll dehydrate too quickly, only losing water from the cells' interiors, not the fluid from around the cells (that's the fluid I need to get rid of). So even though I'm full of water I need to drink lots of water, which'll just slow the process. Wrapping my legs tightly and elevating will help force the extracellular fluid into cells, which will keep them hydrated and allow the diuretic to remove the excess fluid. After two days I've noticed a definite increase in my comfort level (I don't feel so much like a water balloon anymore), but I still have a long way to go.
The million dollar question is why this happened. My kidney function is fine. Amlodipine, one of my blood pressure medications, causes edema. Rapamune, my immunosuppressant, also causes edema. But spontaneously gaining 27# of water due to medications I've been taking for weeks? My doctor today wasn't convinced. Unfortunately she's concerned that the cause is my heart. She told me sometimes after chemotherapy and transplant the heart can weaken, causing fluid retention similar to what I experienced. So tomorrow I have an ECHO study to test for heart failure. I also meet with Dr. Oran to discuss how my GVH is progressing. We'll see how it goes.
08 May 2010
Day 68
Dad's Belgian Waffle Breakfast Feed
Saturday 15 May 2010
0800 - 1300
Christ The King Church
1040 South Grade Road
Hutchinson, MN 55350
I met with Dr. Oran Tuesday. This was the first time I've seen her since I've developed GVHD and she was surprised that my symptoms had not completely cleared yet. Even today my skin, especially my hands, feet, and face, are red and peeling, signs that GVH is still present. Dr. O said symptoms should have disappeared completely within 10 - 14 days, which was Tuesday. Normally at this point I would have been put on stronger immunosuppressants to quell the remaining GVH, but (of course) my situation is more complicated. First, it was Dr. Oran's first time seeing me, so she had no reference as to whether my symptoms are getting better or getting worse or staying steady. Secondly, the Vancomycin I was taking (an antibiotic) can cause a condition called Red Man Syndrome. This syndrome causes the skin to become red, achy, and peel, thus closely mimicking GVH symptoms. Dr. Oran consulted the GVHD expert at the BMT clinic and the two of them were not enough convinced my symptoms are purely GVHD (thinking the Vancomycin and Red Man Syndrome were playing roles) to justify further immune suppression at this point. Apparently the suppression treatment is pretty high-octane, so they don't want to resort to it unless they can be confidant it is necessary.
So it was decided I would be switched from the Vancomycin to Clindamycin (another antibiotic that would do the same job sans the Red Man Syndrome) until the antibiotic run concluded Friday. I'm meeting with her again Tuesday morning. Then she'll be able to note what sort of changes have taken place and decide if further suppression is needed.
It seems that my symptoms have improved since I've stopped the Vancomycin, but my hands especially are still red and painful. My thighs, chest, and back all look good, so I'm confidant the GVH isn't getting worse, it just should be better at this point.
My taste is still all messed up, but it's better than it was before. At first nothing tasted good. Now I've come to enjoy savory things - meat, vegetables (I eat lots of salads), pastas, plain yogurt, cottage cheese, and orange juice. I still have little sensation of salty or sweet, but I've found enough foods to keep me eating well. I have such cravings for the flavors I'm missing, it'll be a great day when they come back.
I've been retaining a ton of water too. When I was discharged from the hospital on 27 April I weighed about 165#. Now I weigh about 190# and my legs look like plump sausages. I've been eating a lot (my appetite is back with a vengeance) but there's no way I put on that much weight from eating (plus if you saw my legs you'd know they're not right). Dr. Oran said GVHD can cause edema, plus one of my blood pressure medications causes water retention. Plus I bet the antibiotics didn't help. Either way, Tuesday I'm guessing Dr. O'll prescribe a diuretic to help alleviate some of the pressure.
So it was decided I would be switched from the Vancomycin to Clindamycin (another antibiotic that would do the same job sans the Red Man Syndrome) until the antibiotic run concluded Friday. I'm meeting with her again Tuesday morning. Then she'll be able to note what sort of changes have taken place and decide if further suppression is needed.
It seems that my symptoms have improved since I've stopped the Vancomycin, but my hands especially are still red and painful. My thighs, chest, and back all look good, so I'm confidant the GVH isn't getting worse, it just should be better at this point.
My taste is still all messed up, but it's better than it was before. At first nothing tasted good. Now I've come to enjoy savory things - meat, vegetables (I eat lots of salads), pastas, plain yogurt, cottage cheese, and orange juice. I still have little sensation of salty or sweet, but I've found enough foods to keep me eating well. I have such cravings for the flavors I'm missing, it'll be a great day when they come back.
I've been retaining a ton of water too. When I was discharged from the hospital on 27 April I weighed about 165#. Now I weigh about 190# and my legs look like plump sausages. I've been eating a lot (my appetite is back with a vengeance) but there's no way I put on that much weight from eating (plus if you saw my legs you'd know they're not right). Dr. Oran said GVHD can cause edema, plus one of my blood pressure medications causes water retention. Plus I bet the antibiotics didn't help. Either way, Tuesday I'm guessing Dr. O'll prescribe a diuretic to help alleviate some of the pressure.
01 May 2010
Day 61
I've been out of the hospital for five days now and it is great to be home. My skin is still peeling all over my hands, face, and shoulders but it doesn't bother me too much. My sense of taste is still gone - I can't taste anything sweet or salty. It seems to be coming back slowly, but maybe I'm just adjusting to the bland taste of everything. I miss taste so bad, I never would have thought losing it would bother me as much as it is. I'm hoping it doesn't last much longer...
Otherwise things are ok. My diabetes is under decent control even though I'm still on steroids. It's good to be outside and enjoying the spring weather.
Otherwise things are ok. My diabetes is under decent control even though I'm still on steroids. It's good to be outside and enjoying the spring weather.
26 April 2010
Day 56
So I haven't been writing much lately mainly because I've been frustrated with my care recently and haven't felt like talking about it. Today the doctors said I could be "revved up" on the high-dose steroids I'm currently taking, making me more agitated and short-tempered, but I think I'm just so sick of being in a damn hospital. Let's recount 2010 so far:
Days Hospitalized:
January - 31
February - ~14
March - ~21
April - 10 (so far...)
Total - 76 (out of 116)
That's 66% of my year spent in this hospital. And they say it's the meds that have me revved up.
Anyway...
I'm still inpatient. I was finally diagnosed with mild GVHD Friday after the doctors spent a week diagnosing me incorrectly with who-knows-what. So with GVHD comes high-dose steroids, which I'm glad to say I've been tolerating well with my diabetes. They have also greatly reduced my GVH symptoms, so I've been feeling well the past few days, although that makes it harder to stay in a hospital room all day. I've been arguing with my attending doctor about a discharge date and I finally got him to commit to tomorrow, pending no changes yadda yadda.... i just hope he walks in on rounds at 10am with my discharge paperwork filled out, cuz I'm going to be packed and sitting on the bed ready to go.
With GVH, I look like a snake my skin is peeling so bad, everything I eat tastes like styrofoam, and I have diarrhea. Other than that things are going well I guess. I just need to get the frack out of here.
Days Hospitalized:
January - 31
February - ~14
March - ~21
April - 10 (so far...)
Total - 76 (out of 116)
That's 66% of my year spent in this hospital. And they say it's the meds that have me revved up.
Anyway...
I'm still inpatient. I was finally diagnosed with mild GVHD Friday after the doctors spent a week diagnosing me incorrectly with who-knows-what. So with GVHD comes high-dose steroids, which I'm glad to say I've been tolerating well with my diabetes. They have also greatly reduced my GVH symptoms, so I've been feeling well the past few days, although that makes it harder to stay in a hospital room all day. I've been arguing with my attending doctor about a discharge date and I finally got him to commit to tomorrow, pending no changes yadda yadda.... i just hope he walks in on rounds at 10am with my discharge paperwork filled out, cuz I'm going to be packed and sitting on the bed ready to go.
With GVH, I look like a snake my skin is peeling so bad, everything I eat tastes like styrofoam, and I have diarrhea. Other than that things are going well I guess. I just need to get the frack out of here.
18 April 2010
Day 47
Friday morning I woke up around 0430 and couldn't stop coughing and couldn't catch my breath. So IRael took me to the ER and they gave me medications and calmed me down. They also drew a bunch of blood cultures to investigate why I have been having low-grade fevers. We were in the ER until around 0730, then we went to the BMT clinic and met with a provider there who changed some of my medications around. My creatinine had also jumped to 1.9, so i received a liter of saline before they sent me home.
I spent the rest of the day sleeping and feeling crappy. Then this morning I received a call from one of the BMT fellows saying one of my blood cultures grew streptococcus. He said I could treat this as an outpatient, but because it is a weekend and additional testing needed to be done, he recommended that I come spend a few days inpatient. So here I am again - room 4B-223. So far they've started me on antibiotics and have drawn a lot more blood. Otherwise I've been sleeping a lot. We'll see what the doctor has to say tomorrow. Hopefully I'll only be in for a few days.
I spent the rest of the day sleeping and feeling crappy. Then this morning I received a call from one of the BMT fellows saying one of my blood cultures grew streptococcus. He said I could treat this as an outpatient, but because it is a weekend and additional testing needed to be done, he recommended that I come spend a few days inpatient. So here I am again - room 4B-223. So far they've started me on antibiotics and have drawn a lot more blood. Otherwise I've been sleeping a lot. We'll see what the doctor has to say tomorrow. Hopefully I'll only be in for a few days.
10 April 2010
Day 40
Hemoglobin 8.2
Platelets 102
WBC 5.3
Creatinine 1.60
Yesterday I met with a midlevel doctor. She thought things are going well except that my creatinine is elevated again, most likely because of the cyclosporin I began Tuesday. My kidneys seem to be sensitive to even this extremely low dose, so I again stopped the cyclosporin. I'm meeting with Oran again Tuesday and we'll discuss what to do instead then.
Platelets 102
WBC 5.3
Creatinine 1.60
Yesterday I met with a midlevel doctor. She thought things are going well except that my creatinine is elevated again, most likely because of the cyclosporin I began Tuesday. My kidneys seem to be sensitive to even this extremely low dose, so I again stopped the cyclosporin. I'm meeting with Oran again Tuesday and we'll discuss what to do instead then.
I also am going to be evaluated by physical therapy. I think the pain in my feet and legs is (at least partly) because my muscles have atrophied (due to the extended hospital stays and not being as active when at home) and become very tight. Some days my legs are so stiff I can barely walk. The doctor yesterday also explained that when muscles tighten they can do so around nerve endings, causing pain. Couple this with the edema I have in my feet putting more pressure on nerve endings and it could explain the faux-neuropathy symptoms I experience.
I've never been a very limber person, but lately it has gotten ridiculous. Some nights I will lay on my back and have IRael help me stretch out my legs. The next day there is a significant improvement in how they feel, so I think PT will do some good. I hope it will make it easier (pain-free) for me to get exercise, especially once my counts are good enough for me to start training to get my strength back.
08 April 2010
Day 38
Hemoglobin 8.8
Platelets 86
WBC 3.5
|Neutrophils| 1.5
Creatinine 1.26
I met with Dr. Oran on Tuesday and again she was pleased with the improvement in most of my counts. Since my creatinine has finally reached acceptable levels she put me back on cyclosporine. The dose is only 25 mg (10% of a standard dose) and we will see how my kidneys react. I believe Dr. Oran wants to increase this dose until we reach the highest level possible that my kidneys will tolerate. She also prescribed a Z Pack (azithromycin, an antibiotic) to help potentially treat whatever I have been coughing about. She considers it "overmedicating", but she'd rather be safe than sorry.
I met yesterday with endocrinology and they don't think the problems I'm experiencing in my feet is neuropathy. It isn't presenting like standard neuropathy, so they think it is more likely due to a medication associated with my kidney function. They will continue to monitor it, in case it is early-stage neuropathy, but recommended I discuss it with nephrology, hoping they would have some insight.
I also met with my ophthalmologist yesterday about my left eye. The good news is that there is no serious or continuing damage in my eye. The vessels are very sensitive and can bleed even if when my platelets aren't < 30. The bad news is that there isn't much he is willing to do about it at this point. It may take weeks for the blood to clear, and that's only if it isn't continuing to bleed. But since my body is still adjusting from the transplant he doesn't think surgical removal of the blood is a good idea. If I continue to have this problem after things "have settled down", then we can discuss surgical intervention. For now, I have to wait it out, as annoying as it is having only one good eye. Maybe I should get a patch...
Platelets 86
WBC 3.5
|Neutrophils| 1.5
Creatinine 1.26
I met with Dr. Oran on Tuesday and again she was pleased with the improvement in most of my counts. Since my creatinine has finally reached acceptable levels she put me back on cyclosporine. The dose is only 25 mg (10% of a standard dose) and we will see how my kidneys react. I believe Dr. Oran wants to increase this dose until we reach the highest level possible that my kidneys will tolerate. She also prescribed a Z Pack (azithromycin, an antibiotic) to help potentially treat whatever I have been coughing about. She considers it "overmedicating", but she'd rather be safe than sorry.
I met yesterday with endocrinology and they don't think the problems I'm experiencing in my feet is neuropathy. It isn't presenting like standard neuropathy, so they think it is more likely due to a medication associated with my kidney function. They will continue to monitor it, in case it is early-stage neuropathy, but recommended I discuss it with nephrology, hoping they would have some insight.
I also met with my ophthalmologist yesterday about my left eye. The good news is that there is no serious or continuing damage in my eye. The vessels are very sensitive and can bleed even if when my platelets aren't < 30. The bad news is that there isn't much he is willing to do about it at this point. It may take weeks for the blood to clear, and that's only if it isn't continuing to bleed. But since my body is still adjusting from the transplant he doesn't think surgical removal of the blood is a good idea. If I continue to have this problem after things "have settled down", then we can discuss surgical intervention. For now, I have to wait it out, as annoying as it is having only one good eye. Maybe I should get a patch...
04 April 2010
Day 34
Hemoglobin 8.3
Platelets 81
WBC 2.8
Creatinine 1.37
I met with Dr. Oran yesterday, she was pleased to see that my counts had improved slightly. She tweaked the dosing on my medications a little more and hopes to add cyclosporin back when I meet with her again Tuesday. She also ordered a chest CT to investigate this cough I still have, but because I have no other symptoms she didn't think it would show anything significant.
Last Thursday I woke up and the hemorrhage in my left eye was back, again disrupting about 90% of my field of vision in that eye. It is exactly like when I was inpatient and my platelets were low, but since that is not the case this time (my platelets are at an acceptable level), I'm not sure what is going on. I have an appointment with a retina specialist on Wednesday to get it checked out.
I have also been having a lot of pain in my legs and feet. By the end of the day my feet are swollen with a tingling/burning sensation - Dr. Oran believes this to be neuropathy, a common complication for diabetics. I also have joint pain in my right knee as well as deep "bone" pain in both legs from my knees to my ankles. I don't think this too is neuropathy, but Dr. Oran is expediting an appointment for me to see an endocrinologist. Neuropathy is their specialty so they will figure it out.
Platelets 81
WBC 2.8
Creatinine 1.37
I met with Dr. Oran yesterday, she was pleased to see that my counts had improved slightly. She tweaked the dosing on my medications a little more and hopes to add cyclosporin back when I meet with her again Tuesday. She also ordered a chest CT to investigate this cough I still have, but because I have no other symptoms she didn't think it would show anything significant.
Last Thursday I woke up and the hemorrhage in my left eye was back, again disrupting about 90% of my field of vision in that eye. It is exactly like when I was inpatient and my platelets were low, but since that is not the case this time (my platelets are at an acceptable level), I'm not sure what is going on. I have an appointment with a retina specialist on Wednesday to get it checked out.
I have also been having a lot of pain in my legs and feet. By the end of the day my feet are swollen with a tingling/burning sensation - Dr. Oran believes this to be neuropathy, a common complication for diabetics. I also have joint pain in my right knee as well as deep "bone" pain in both legs from my knees to my ankles. I don't think this too is neuropathy, but Dr. Oran is expediting an appointment for me to see an endocrinologist. Neuropathy is their specialty so they will figure it out.
31 March 2010
Day 30
Hemoglobin 8.6
Platelets 72
WBC 2.3
Creatinine 1.40
Except for a few hiccups here and there things are going really well. Yesterday I met with Dr. Oran. My biopsy results showed no signs of leukemia, and DNA studies showed 97% of circulating WBCs and 99% of cells in the marrow contain Mitch's DNA. This shows that Mitch's cells have successfully implanted, have removed most of my marrow cells (thus removing the cancer), and are producing the cells they need to be. Although not at 100%, Dr. Oran is very pleased with where I am at for only being +30 days.
She is concerned, however, with the fact that my counts seem to be slowly dropping. The cause of this is not clear to her. She would be much more concerned if i hadn't just had such a successful biopsy. Since the tests confirm things seem to be going well in the marrow she believes the cause may be one of my medication. So we discontinued the MMF a few days early (it only is typically taken through day 31) and switched one blood pressure medication for another. I will be seeing her again on Saturday to recheck labs and further monitor my counts and medication changes. She still hopes to put me back on low-dose cyclosporin, pending improved kidney function.
I still have the cough but it is not as bothersome as it was last week. I have no other symptoms, so careful monitoring continues to be the name of the game. I generally feel well, my energy continues to improve, and I am able to get out of the house and enjoy the beautiful spring weather we have been having in Minnesota.
Platelets 72
WBC 2.3
Creatinine 1.40
Except for a few hiccups here and there things are going really well. Yesterday I met with Dr. Oran. My biopsy results showed no signs of leukemia, and DNA studies showed 97% of circulating WBCs and 99% of cells in the marrow contain Mitch's DNA. This shows that Mitch's cells have successfully implanted, have removed most of my marrow cells (thus removing the cancer), and are producing the cells they need to be. Although not at 100%, Dr. Oran is very pleased with where I am at for only being +30 days.
She is concerned, however, with the fact that my counts seem to be slowly dropping. The cause of this is not clear to her. She would be much more concerned if i hadn't just had such a successful biopsy. Since the tests confirm things seem to be going well in the marrow she believes the cause may be one of my medication. So we discontinued the MMF a few days early (it only is typically taken through day 31) and switched one blood pressure medication for another. I will be seeing her again on Saturday to recheck labs and further monitor my counts and medication changes. She still hopes to put me back on low-dose cyclosporin, pending improved kidney function.
I still have the cough but it is not as bothersome as it was last week. I have no other symptoms, so careful monitoring continues to be the name of the game. I generally feel well, my energy continues to improve, and I am able to get out of the house and enjoy the beautiful spring weather we have been having in Minnesota.
23 March 2010
Day 22
Hemoglobin 9.3
Platelets 120
WBC 3.4
Creatinine 1.77
I met with Dr. Oran today. She is pleased with how I am doing but hoped my kidneys would have recovered better than they have. My hemoglobin, platelets, and WBC counts have stabilized within acceptable values. This is especially good news for my WBC - she has confidence in their ability to begin defending me. So much so that I am discontinuing the 1000mg of Penicillin I was taking each day and reducing the amount of Acyclovir (anti-viral) I take from 4000mg daily to 2400mg daily. Both good steps in the right direction!
Dr. Oran had hoped that my kidneys would have recovered better than they did (they actually showed no improvement) since stopping the cyclosporin. If they had, she wanted to put me back on the cyclosporin but at a much lower dose, hoping to find a sweet spot that would allow me to be on the drug while keeping my kidneys happy. But since there was no improvement in my creatinine level she did not add the cyclosporin back. She did not replace it with any other drug either. I did not ask why another was not prescribed to take cyclosporin's place.
Dr. Oran also said that the "rash" that has appeared on my forehead - and now spread to cover the top and back of my head and neck, behind my ears, and onto my chest - is not a typical presentation of GVHD. She called it acne, although it is unlike any acne I have ever seen! Not that it could not be an early presentation of GV"HD she added, but still unlike how the disease typically presents. Good news, I guess, and since the rash still has no other symptoms - no itching, burning, peeling, associated fever, etc - I guess it is a minor concern. She prescribed some hydrocortisone creme in case it is developing GVHD and we will see if that has an impact.
My biopsy went well, it was probably the best one I have had yet. For the biopsy they take two kinds of samples. The first is a bone core taken from the iliac crest of the pelvis. Using a hollow cylinder with a sharp edge they screw out a small core. They then insert a needle into the hole left when the bone is removed and draw three syringes full of the liquid marrow found on the inside of bones. This liquid is called the aspirate. They use lidocaine to numb the area to remove the bone core, so that process is not painful at all. Drawing the aspirate, however, has been the most bindingly intense pain I have ever felt, and, unlike the lidocaine, there is little that can be done to reduce the intensity. This time, however, the pain had only a slight edge. It hurt, but nothing like previous biopsies I have had. I hope I can get the same doctor to perform all my future biopsies. The combination of her skill, the lidocaine, and the fentanyl-ativan combo I also received made the experience much more pleasant than usual.
My next appointment is with a mid-level - a doctor but not an attending like Dr. Oran - on Friday for a follow up to the medication changes made today. I will meet with Dr. Oran next Tuesday to discuss the results of my biopsy and reassess the cyclosporin situation, hoping for an improvement in my kidney function. My mission is to drink 3L of water each day between then and now, hoping it is the love my kidneys have been looking for.
Platelets 120
WBC 3.4
Creatinine 1.77
I met with Dr. Oran today. She is pleased with how I am doing but hoped my kidneys would have recovered better than they have. My hemoglobin, platelets, and WBC counts have stabilized within acceptable values. This is especially good news for my WBC - she has confidence in their ability to begin defending me. So much so that I am discontinuing the 1000mg of Penicillin I was taking each day and reducing the amount of Acyclovir (anti-viral) I take from 4000mg daily to 2400mg daily. Both good steps in the right direction!
Dr. Oran had hoped that my kidneys would have recovered better than they did (they actually showed no improvement) since stopping the cyclosporin. If they had, she wanted to put me back on the cyclosporin but at a much lower dose, hoping to find a sweet spot that would allow me to be on the drug while keeping my kidneys happy. But since there was no improvement in my creatinine level she did not add the cyclosporin back. She did not replace it with any other drug either. I did not ask why another was not prescribed to take cyclosporin's place.
Dr. Oran also said that the "rash" that has appeared on my forehead - and now spread to cover the top and back of my head and neck, behind my ears, and onto my chest - is not a typical presentation of GVHD. She called it acne, although it is unlike any acne I have ever seen! Not that it could not be an early presentation of GV"HD she added, but still unlike how the disease typically presents. Good news, I guess, and since the rash still has no other symptoms - no itching, burning, peeling, associated fever, etc - I guess it is a minor concern. She prescribed some hydrocortisone creme in case it is developing GVHD and we will see if that has an impact.
My biopsy went well, it was probably the best one I have had yet. For the biopsy they take two kinds of samples. The first is a bone core taken from the iliac crest of the pelvis. Using a hollow cylinder with a sharp edge they screw out a small core. They then insert a needle into the hole left when the bone is removed and draw three syringes full of the liquid marrow found on the inside of bones. This liquid is called the aspirate. They use lidocaine to numb the area to remove the bone core, so that process is not painful at all. Drawing the aspirate, however, has been the most bindingly intense pain I have ever felt, and, unlike the lidocaine, there is little that can be done to reduce the intensity. This time, however, the pain had only a slight edge. It hurt, but nothing like previous biopsies I have had. I hope I can get the same doctor to perform all my future biopsies. The combination of her skill, the lidocaine, and the fentanyl-ativan combo I also received made the experience much more pleasant than usual.
My next appointment is with a mid-level - a doctor but not an attending like Dr. Oran - on Friday for a follow up to the medication changes made today. I will meet with Dr. Oran next Tuesday to discuss the results of my biopsy and reassess the cyclosporin situation, hoping for an improvement in my kidney function. My mission is to drink 3L of water each day between then and now, hoping it is the love my kidneys have been looking for.
21 March 2010
Day 20
Thursday my doctors gave me a goal to drink 3L of water that day in an effort to keep my kidneys hydrated and my creatinine low. I did, but by Friday morning my creatinine had jumped back to ~1.8. The decision was made to take me off the cyclosporine, since functioning kidneys trump anti-rejection (I am still on the MMF so I am not completely off anti-rejection meds). I have an appointment with Dr. Oran Tuesday morning to assess my medications and, I am assuming, add another anti-rejection med. The problem is, I was told by the doctor I saw on Friday, that the next common anti-rejection drugs have interactions with VFEND, the ever important antifungal I take. So she did not substitute another drug for the cyclosporine for now. This runs the risk of GVH appearing before I see Oran on Tuesday. So far I have probably felt better off the cyclosporine than I did while I was taking it (the side effects of that drug were awful). However, I think I am showing signs of GVH: I have changes to the skin appearing on my head and my GI tract has become irritated. The skin on my forehead and in my hair has an odd bumpiness to it. It is not painful or even very noticeable unless you look closely, but I feel this may be how it begins. We will see what Oran has to say about it on Tuesday. My hope is that I am put on a new anti-rejection and, if my symptoms are because of GVH, they disappear without the need for further treatment. Acute GVH is treated with high-dose steroids, and we all know how much my diabetes would love that.
I also have a bone marrow biopsy Tuesday morning...ugh. Just thinking about it makes me depressed. It will be a first look at what is going on in my marrow and how Mitch's cells are doing. I am not quite sure what to expect, if there will still be leukemic cells present, or my cells present, or what. Good questions for Oran I guess.
I also have a bone marrow biopsy Tuesday morning...ugh. Just thinking about it makes me depressed. It will be a first look at what is going on in my marrow and how Mitch's cells are doing. I am not quite sure what to expect, if there will still be leukemic cells present, or my cells present, or what. Good questions for Oran I guess.
18 March 2010
Day 17
Hemoglobin 9.2
Platelets 147
WBC 4.0
Creatinine 1.62
My creatinine was lower today, so my kidneys seem to have responded well to better hydration. I didn't receive another infusion today, instead I'm trying to drink about 3L of water on my own and see how my kidneys react to that. If that's not enough I'll receive an infusion tomorrow at my appointment.
Today I felt worse than usual. I wonder if it is related to my kidney function (since I didn't receive the fluid infusion today). We'll see how things go tomorrow.
Platelets 147
WBC 4.0
Creatinine 1.62
My creatinine was lower today, so my kidneys seem to have responded well to better hydration. I didn't receive another infusion today, instead I'm trying to drink about 3L of water on my own and see how my kidneys react to that. If that's not enough I'll receive an infusion tomorrow at my appointment.
Today I felt worse than usual. I wonder if it is related to my kidney function (since I didn't receive the fluid infusion today). We'll see how things go tomorrow.
17 March 2010
Day 16
Hemoglobin 9.5
Platelets 142
WBC 3.7
Creatinine 1.81
I was pretty nauseated again today, I think mainly due to the medications I'm taking. The doctor I saw today thinks the reason my creatinine took such a jump is because I am not drinking enough water. So today at the clinic they infused a liter of saline and will see if it impacts my creatinine when it is tested tomorrow. If not then they will change my medications.
I didn't prepare what I wanted about my medications like I said I would yesterday. Maybe for tomorrow.
Platelets 142
WBC 3.7
Creatinine 1.81
I was pretty nauseated again today, I think mainly due to the medications I'm taking. The doctor I saw today thinks the reason my creatinine took such a jump is because I am not drinking enough water. So today at the clinic they infused a liter of saline and will see if it impacts my creatinine when it is tested tomorrow. If not then they will change my medications.
I didn't prepare what I wanted about my medications like I said I would yesterday. Maybe for tomorrow.
16 March 2010
Day 15
Hemoglobin 9.6
Platelets 128
WBC 4.8
Creatinine 1.77
It's great to be home, but it is also much more difficult. I get tired fast, but it is just like the previous times I have been discharged, so I expected this. The worst part are the pills I need to take. About 40 total every day, many of which are used to combat the side effects of other medications. I will have more on that tomorrow.
My creatinine also took a huge climb, which is worrisome. Hopefully it is just a fluke spike and tomorrow it will have decreased.
Platelets 128
WBC 4.8
Creatinine 1.77
It's great to be home, but it is also much more difficult. I get tired fast, but it is just like the previous times I have been discharged, so I expected this. The worst part are the pills I need to take. About 40 total every day, many of which are used to combat the side effects of other medications. I will have more on that tomorrow.
My creatinine also took a huge climb, which is worrisome. Hopefully it is just a fluke spike and tomorrow it will have decreased.
15 March 2010
Day 14
Hemoglobin 9.3
Platelets 91
WBC 8.4
|Neutrophils| 7.1
Creatinine 1.48
I'm being discharged today. I'm excited to be going home. Tomorrow I'll begin daily clinic visits at the Bone Marrow Clinic. It won't be fun having to come back here every day for a while, but definitely better than being inpatient.
Platelets 91
WBC 8.4
|Neutrophils| 7.1
Creatinine 1.48
I'm being discharged today. I'm excited to be going home. Tomorrow I'll begin daily clinic visits at the Bone Marrow Clinic. It won't be fun having to come back here every day for a while, but definitely better than being inpatient.
14 March 2010
Day 13
Hemoglobin 8.9
Platelets 70
WBC 9.0!!!
|Neutrophils| 7.4
Creatinine 1.52
This morning I woke up when the doctors made rounds and threw up. Once they left I went back to sleep until Dietz came to visit around 1300. I took all my pills, received some dilaudid, and threw up again. Now I feel fine. The problem here is that I threw up most of my pills that I took, including my CSA and MMF. So now my doctors are concerned that I will not be able to keep my meds down and, thus, unable to be discharged.
I had not thrown up in like four days before today. So I am not sure why I threw up the first time. Every other time I have had chemotherapy I have had morning sickness for a while afterwards. With it I get really nauseous right away in the mornings, usually throw up, then feel fine the rest of the day.
The second time I think it was a combination of having taken my pills (there are a lot of them, so my stomach was full of water) immediately before receiving a strong dose of dilaudid... I think the two just did not mesh well. I didn't have a problem taking the same medications last night, so I am hoping this is a one-time deal. As long as I can keep them down tomorrow morning I think I will be ok. I really hope they do not discharge me for that reason alone.
Platelets 70
WBC 9.0!!!
|Neutrophils| 7.4
Creatinine 1.52
This morning I woke up when the doctors made rounds and threw up. Once they left I went back to sleep until Dietz came to visit around 1300. I took all my pills, received some dilaudid, and threw up again. Now I feel fine. The problem here is that I threw up most of my pills that I took, including my CSA and MMF. So now my doctors are concerned that I will not be able to keep my meds down and, thus, unable to be discharged.
I had not thrown up in like four days before today. So I am not sure why I threw up the first time. Every other time I have had chemotherapy I have had morning sickness for a while afterwards. With it I get really nauseous right away in the mornings, usually throw up, then feel fine the rest of the day.
The second time I think it was a combination of having taken my pills (there are a lot of them, so my stomach was full of water) immediately before receiving a strong dose of dilaudid... I think the two just did not mesh well. I didn't have a problem taking the same medications last night, so I am hoping this is a one-time deal. As long as I can keep them down tomorrow morning I think I will be ok. I really hope they do not discharge me for that reason alone.
13 March 2010
Day 12
Hemoglobin 9.5
Platelets 56
WBC 4.4!!!
|Neutrophils| 2.7!!!
Creatinine 1.52
Great news today - my white cell count is in the normal range! Dr. Oran said that she'll discharge me Monday if I eat well over the weekend. Most of my meds will be switched to pills by tonight, I'll just need to keep them down (which shouldn't be a problem, I haven't thrown up in days). I'm super excited but I need to not get my hopes too high. There are a lot of reasons why my discharge could be delayed by a day or two, some of which are out of my control. Still, I can't wait to get home.
I've received a growth factor each night, that's why my counts have returned so sharply. The side effect of this is bone/deep tissue ache (Mitch knows what I'm talking about). So today I have that soreness but less nausea than I've been having. I think I get one last dose of the growth factor tonight. Once it's done it'll take a day or two before the aching stops.
My lunch just arrived: chicken nuggets, tater tots, peaches, and chicken noodle soup. We'll see how this goes...
Happy Birthday Mitch! I didn't get you a gift, unless you want some medical supplies, then I got a whole cart for you... Who couldn't use saline syringes and gauze pads? I hope you do something fun.
Platelets 56
WBC 4.4!!!
|Neutrophils| 2.7!!!
Creatinine 1.52
Great news today - my white cell count is in the normal range! Dr. Oran said that she'll discharge me Monday if I eat well over the weekend. Most of my meds will be switched to pills by tonight, I'll just need to keep them down (which shouldn't be a problem, I haven't thrown up in days). I'm super excited but I need to not get my hopes too high. There are a lot of reasons why my discharge could be delayed by a day or two, some of which are out of my control. Still, I can't wait to get home.
I've received a growth factor each night, that's why my counts have returned so sharply. The side effect of this is bone/deep tissue ache (Mitch knows what I'm talking about). So today I have that soreness but less nausea than I've been having. I think I get one last dose of the growth factor tonight. Once it's done it'll take a day or two before the aching stops.
My lunch just arrived: chicken nuggets, tater tots, peaches, and chicken noodle soup. We'll see how this goes...
Happy Birthday Mitch! I didn't get you a gift, unless you want some medical supplies, then I got a whole cart for you... Who couldn't use saline syringes and gauze pads? I hope you do something fun.
12 March 2010
Day 11
Hemoglobin 9.4
Platelets 36
WBC 2.0
|Neutrophils| 0.7
Creatinine 1.47
I felt a lot better today than I did yesterday. My white cell count is up again and my doctors believe these are Mitch's cells beginning to present. They also said this is a sign I could be discharged soon. That event hinges on four factors:
Platelets 36
WBC 2.0
|Neutrophils| 0.7
Creatinine 1.47
I felt a lot better today than I did yesterday. My white cell count is up again and my doctors believe these are Mitch's cells beginning to present. They also said this is a sign I could be discharged soon. That event hinges on four factors:
- My white cell count continues to rise.
- I start eating and thus don't need the TPN.
- All my IV medications get switched to oral.
- No further complications arise.
11 March 2010
Day 10
Hemoglobin 7.5
Platelets 42
WBC 1.0
|Neutrophils| 0.3
Creatinine 1.62
Received Two Blood Packets
Today I felt exhausted and literally slept until 1930 and when I was up I felt like shit. It is like the feeling you get when you have the flu and your body just feels awful. The heme-onc fellow on service came in and talked to my dad and IRael (while I slept) and he thought I could be feeling this way because my kidneys are finally showing their stress and may not be filtering efficiently, thus giving me the toxic feeling..
My creatinine has slowly been climbing. Dr. Oran (who is now the attending on service, hooray!) says it is because of the cyclosporin (CSA) I am taking. CSA an important anti-rejection drug but is known to be hard on the kidneys. Since my kidneys are already compromised it seems they just cannot handle the stress. Dr. O hopes that I can stay on the drug until at least day 30 (it is just that good of an anti-rejection drug, and during the first month you need your A-team of anti-rejection meds). There are other options, ones with a lower kidney toxicity, but CSA is the gold standard. That being said, my doctors would rather have functioning kidneys than CSA. So if my kidney function got too low they would take me off the CSA before they would dialyze me. IRael told me that the heme-onc fellow also said my dose of CSA is going to be reduced in an effort to relieve the stress.
If I go off CSA the likelihood that I develop graft versus host disease (GVHD) increases, even on other drugs. So we will have to wait and see how this pans out.
I have not really noticed a difference in my level of nausea since that sticker was applied to me. It really has not had a good chance though, since I slept all day today and feel all gross anyway. It has been effective in giving me terrible dry mouth, so at least I know I am receiving the drug.
Platelets 42
WBC 1.0
|Neutrophils| 0.3
Creatinine 1.62
Received Two Blood Packets
Today I felt exhausted and literally slept until 1930 and when I was up I felt like shit. It is like the feeling you get when you have the flu and your body just feels awful. The heme-onc fellow on service came in and talked to my dad and IRael (while I slept) and he thought I could be feeling this way because my kidneys are finally showing their stress and may not be filtering efficiently, thus giving me the toxic feeling..
My creatinine has slowly been climbing. Dr. Oran (who is now the attending on service, hooray!) says it is because of the cyclosporin (CSA) I am taking. CSA an important anti-rejection drug but is known to be hard on the kidneys. Since my kidneys are already compromised it seems they just cannot handle the stress. Dr. O hopes that I can stay on the drug until at least day 30 (it is just that good of an anti-rejection drug, and during the first month you need your A-team of anti-rejection meds). There are other options, ones with a lower kidney toxicity, but CSA is the gold standard. That being said, my doctors would rather have functioning kidneys than CSA. So if my kidney function got too low they would take me off the CSA before they would dialyze me. IRael told me that the heme-onc fellow also said my dose of CSA is going to be reduced in an effort to relieve the stress.
If I go off CSA the likelihood that I develop graft versus host disease (GVHD) increases, even on other drugs. So we will have to wait and see how this pans out.
I have not really noticed a difference in my level of nausea since that sticker was applied to me. It really has not had a good chance though, since I slept all day today and feel all gross anyway. It has been effective in giving me terrible dry mouth, so at least I know I am receiving the drug.
10 March 2010
Day 9
Hemoglobin 8.3
Platelets 26
WBC 0.9
|Neutrophils| 0.4
Creatinine 1.47
Received Platelets
Another day where I had more nausea than usual. I was prescribed a medicated disc that is adhered right behind my ear. Supposibly this will help with motion sickness (my nausea gets worse anytime I get out of bed). It supplies a drug through the skin and is changed every 72 hours. The most common side effect is dry mouth, which sucks because my mouth already feels like a desert. If it works I guess it's worth it.
I'd also like to say how difficult it is to take a picture like the one above without help.
Platelets 26
WBC 0.9
|Neutrophils| 0.4
Creatinine 1.47
Received Platelets
Another day where I had more nausea than usual. I was prescribed a medicated disc that is adhered right behind my ear. Supposibly this will help with motion sickness (my nausea gets worse anytime I get out of bed). It supplies a drug through the skin and is changed every 72 hours. The most common side effect is dry mouth, which sucks because my mouth already feels like a desert. If it works I guess it's worth it.
I'd also like to say how difficult it is to take a picture like the one above without help.
09 March 2010
Day 8
Hemoglobin 8.8
Platelets 23
WBC 1.2
|Neutrophils| 0.5
Creatinine 1.45
Received Platelets
I was very nauseous this morning so I spent it sleeping. It got better as the day went on. I received a bag of platelets early today since my count dropped below three. Otherwise it was a pretty standard day.
Platelets 23
WBC 1.2
|Neutrophils| 0.5
Creatinine 1.45
Received Platelets
I was very nauseous this morning so I spent it sleeping. It got better as the day went on. I received a bag of platelets early today since my count dropped below three. Otherwise it was a pretty standard day.
08 March 2010
Day 7
Hemoglobin 8.8
Platelets 33
WBC 1.1
|Neutrophils| 0.5
Creatinine 1.36
Today was ok. I'm trying to eat more real food but it's difficult. Fruit seems to work well, other things tend to just cause more irritation. I tend to get more nauseous as my stomach gets more full, so I don't know. As long as I'm on TPN I don't need to eat, so I guess I won't push too hard.
Platelets 33
WBC 1.1
|Neutrophils| 0.5
Creatinine 1.36
Today was ok. I'm trying to eat more real food but it's difficult. Fruit seems to work well, other things tend to just cause more irritation. I tend to get more nauseous as my stomach gets more full, so I don't know. As long as I'm on TPN I don't need to eat, so I guess I won't push too hard.
07 March 2010
Day 6
Hemoglobin 9.6
Platelets 55
WBC 0.7
|Neutrophils| 0.1
Creatinine 1.32
My counts have been bouncing around over the past few days - they'll be down one day and up the next. This seems counterintuitive to what should be happening since I've received chemo - shouldn't my counts just be going down at this point? Good question, so I asked my doctor. She explained that the type of transplant I'm having relies on the donor system to, upon implantation, do the work of a strong chemo treatment in eradicating the cancerous marrow cells. The pre-transplant treatments function to weaken my system, making it easier for the donor system to implement. That being the case, the dose of chemotherapy and radiation given to me were relatively weak. Thus, my cells are still dividing. The chemo will eventually cause my numbers to completely drop, but when used in tandem with the growth factor I receive every night (growth factor = drug to make the cells divide = a rise in counts) an erratic downward trend is often seen. I liken it to an engine running out of fuel. It'll sputter a few times before it completely stops.
Right now I'm feeling really nauseous but I felt pretty good for most of the day.
Platelets 55
WBC 0.7
|Neutrophils| 0.1
Creatinine 1.32
My counts have been bouncing around over the past few days - they'll be down one day and up the next. This seems counterintuitive to what should be happening since I've received chemo - shouldn't my counts just be going down at this point? Good question, so I asked my doctor. She explained that the type of transplant I'm having relies on the donor system to, upon implantation, do the work of a strong chemo treatment in eradicating the cancerous marrow cells. The pre-transplant treatments function to weaken my system, making it easier for the donor system to implement. That being the case, the dose of chemotherapy and radiation given to me were relatively weak. Thus, my cells are still dividing. The chemo will eventually cause my numbers to completely drop, but when used in tandem with the growth factor I receive every night (growth factor = drug to make the cells divide = a rise in counts) an erratic downward trend is often seen. I liken it to an engine running out of fuel. It'll sputter a few times before it completely stops.
Right now I'm feeling really nauseous but I felt pretty good for most of the day.
06 March 2010
Day 5
Hemoglobin 8.4
Platelets 74
WBC 0.4
Creatinine 1.29
Not feeling very well today. My counts have really started to drop and since my WBC is below 0.5 x 10^9 cells/L I'm officially neutropenic. I'm still not eating much but my scheduled anti-nausea drug has still kept me from throwing up, although I still get nauseous.
Platelets 74
WBC 0.4
Creatinine 1.29
Not feeling very well today. My counts have really started to drop and since my WBC is below 0.5 x 10^9 cells/L I'm officially neutropenic. I'm still not eating much but my scheduled anti-nausea drug has still kept me from throwing up, although I still get nauseous.
05 March 2010
Day 4
Hemoglobin 9.6
Platelets 98
WBC 0.6
|Neutrophils| 0.4
Creatinine 1.30
The scheduled anti-nausea medications they started me on yesterday have helped a lot with my symptoms. I haven't thrown up once today. My stomach still has that irritated feeling and I'm still really tired. Otherwise today went ok.
Platelets 98
WBC 0.6
|Neutrophils| 0.4
Creatinine 1.30
The scheduled anti-nausea medications they started me on yesterday have helped a lot with my symptoms. I haven't thrown up once today. My stomach still has that irritated feeling and I'm still really tired. Otherwise today went ok.
04 March 2010
Day 3
Hemoglobin 10.0
Platelets 12.1
WBC 1.1
|Neutrophils| 0.8
Creatinine 1.11
My nausea seems to be getting worse so they decided to switch me to a scheduled anti-nausea drug in addition to the ativan I've been using for acute symptoms. I've also been having headaches, so they switched my Cyclosporin from two four-hour infusions daily to a continuous 24 hour drip. I guess headaches are a common side effect, hopefully this will help.
Otherwise I spent myday sleeping and puking.
Platelets 12.1
WBC 1.1
|Neutrophils| 0.8
Creatinine 1.11
My nausea seems to be getting worse so they decided to switch me to a scheduled anti-nausea drug in addition to the ativan I've been using for acute symptoms. I've also been having headaches, so they switched my Cyclosporin from two four-hour infusions daily to a continuous 24 hour drip. I guess headaches are a common side effect, hopefully this will help.
Otherwise I spent myday sleeping and puking.
03 March 2010
Day 2
Hemoglobin 7.8
Platelets 139
WBC 1.4
|Neutrophils| 1.1
Creatinine 1.19
Received Two Blood Packs
More vomiting and nausea today. The doctors did a CT scan of my gut to make sure the constipation and associated discomfort wasn't something more serious. It wasn't, I'm simply packed to the gills with shit.
That's what I've been "eating" for the past 24 hours. The yellow fluid is a mixture of amino acids (protein building-blocks), dextrose (sugar), sodium, calcium, magnesium, phosphate, multivitamins, trace elements (cobalt, manganese, nickel, aluminum, etc - elements needed in extremely low concentrations), phytonadione (Vitamin K), insulin (to combat the dextrose), and then acetate and chloride to buffer the solution (make it suitable for administration in the body). Everything is computed exactly for my body mass and how many calories they want me to have.
The large yellow bag can be thought of as the proteins and carbs, then the smaller white bag is the fat (lipid). It's a 20% fat emulsion consisting of 50g soybean oil, 3.0g phospholipids from powdered egg yolk, and 5.625g glycerine (probably to help bind it all together). The lipid portion adds 500 calories.
Sounds delicious, no? Way better than eating vegetables or meat. Plus the whole chewing annoyance is conveniently avoided.
Platelets 139
WBC 1.4
|Neutrophils| 1.1
Creatinine 1.19
Received Two Blood Packs
More vomiting and nausea today. The doctors did a CT scan of my gut to make sure the constipation and associated discomfort wasn't something more serious. It wasn't, I'm simply packed to the gills with shit.
That's what I've been "eating" for the past 24 hours. The yellow fluid is a mixture of amino acids (protein building-blocks), dextrose (sugar), sodium, calcium, magnesium, phosphate, multivitamins, trace elements (cobalt, manganese, nickel, aluminum, etc - elements needed in extremely low concentrations), phytonadione (Vitamin K), insulin (to combat the dextrose), and then acetate and chloride to buffer the solution (make it suitable for administration in the body). Everything is computed exactly for my body mass and how many calories they want me to have.
The large yellow bag can be thought of as the proteins and carbs, then the smaller white bag is the fat (lipid). It's a 20% fat emulsion consisting of 50g soybean oil, 3.0g phospholipids from powdered egg yolk, and 5.625g glycerine (probably to help bind it all together). The lipid portion adds 500 calories.
Sounds delicious, no? Way better than eating vegetables or meat. Plus the whole chewing annoyance is conveniently avoided.
02 March 2010
Day 1
Hemoglobin 8.5
Platelets 107
WBC 1.1
|Neutrophils| 0.9
Creatinine 1.24
I received my second and last dose of cells from Mitch tonight. I needed at least five units and he ended up supplying a little over six. The more the merrier, so they infused it all tonight. Mitch was feeling sore after it was all done and just wanted to go home to sleep. He has the day off work tomorrow so he'll have a chance to recover.
My day was pretty standard. I threw up a bunch and slept even more, but I felt ok by the end of the day. They started me on liquid nutrition called TPN (Total Parenteral Nutrition) since I'm typically eating only one small meal a day. I've been on it before, basically it's a big bag of the building blocks of food (amino acids, electrolytes, lipids) that are specifically proportioned for my body weight and slowly pumped into my veins. This way I don't have to eat by mouth, although it's better if I do. My doctors don't want me to start becoming malnourished so they decided to be proactive and start me on it early. It smells gross.
Platelets 107
WBC 1.1
|Neutrophils| 0.9
Creatinine 1.24
I received my second and last dose of cells from Mitch tonight. I needed at least five units and he ended up supplying a little over six. The more the merrier, so they infused it all tonight. Mitch was feeling sore after it was all done and just wanted to go home to sleep. He has the day off work tomorrow so he'll have a chance to recover.
My day was pretty standard. I threw up a bunch and slept even more, but I felt ok by the end of the day. They started me on liquid nutrition called TPN (Total Parenteral Nutrition) since I'm typically eating only one small meal a day. I've been on it before, basically it's a big bag of the building blocks of food (amino acids, electrolytes, lipids) that are specifically proportioned for my body weight and slowly pumped into my veins. This way I don't have to eat by mouth, although it's better if I do. My doctors don't want me to start becoming malnourished so they decided to be proactive and start me on it early. It smells gross.
01 March 2010
Day 0
Hemoglobin 9.6
Platelets 117
WBC 1.2
|Neutrophils| 1.2
Creatinine 1.31
I received Mitch's cells today. It took about six hours to collect them and about 15 minutes for them to be infused into me. He'll have to do a second collection tomorrow so he'll be back at the hospital then and I'll receive another packet tomorrow night.
Otherwise I spent the day feeling ill and sleeping.
Platelets 117
WBC 1.2
|Neutrophils| 1.2
Creatinine 1.31
I received Mitch's cells today. It took about six hours to collect them and about 15 minutes for them to be infused into me. He'll have to do a second collection tomorrow so he'll be back at the hospital then and I'll receive another packet tomorrow night.
Otherwise I spent the day feeling ill and sleeping.
28 February 2010
Day -1
Hemoglobin 8.0
Platelets 150
WBC 1.8
|Neutrophils| 1.7
Creatinine 1.24
Received Two Blood Packs
Right away this morning I received two packets of blood before I headed down to be irradiated. It was an uneventful process, I sat on a table and they irradiated about six minutes on each of my left and right sides. It was completely painless, colorless, tasteless, etc., the only way I knew the machine was on was because it made a buzzing sound. Once I was done I returned to my room. I was actually feeling pretty well for a while, then the effects started setting in. By afternoon I was extremely tired, my entire body was sore and I was nauseous. I slept for most of the afternoon, took some meds once I woke up and now I'm feeling a little better. I'm still experiencing stomach pains.
Tomorrow's the big day. Mitch will begin collection in the morning and I'll most likely receive the cells by 6 or 7pm.
Platelets 150
WBC 1.8
|Neutrophils| 1.7
Creatinine 1.24
Received Two Blood Packs
Right away this morning I received two packets of blood before I headed down to be irradiated. It was an uneventful process, I sat on a table and they irradiated about six minutes on each of my left and right sides. It was completely painless, colorless, tasteless, etc., the only way I knew the machine was on was because it made a buzzing sound. Once I was done I returned to my room. I was actually feeling pretty well for a while, then the effects started setting in. By afternoon I was extremely tired, my entire body was sore and I was nauseous. I slept for most of the afternoon, took some meds once I woke up and now I'm feeling a little better. I'm still experiencing stomach pains.
Tomorrow's the big day. Mitch will begin collection in the morning and I'll most likely receive the cells by 6 or 7pm.
27 February 2010
Day -2
Hemoglobin 8.3
Platelets 143
WBC 2.9
|Neutrophils| 2.8
Creatinine 1.15
My day started out by me throwing up all over the floor next to my bed. That kinda set the tone for the rest of the day, although the biggest problem I'm having now isn't with nausea. My stomach is really upset, kinda like indigestion. The doctors say the lining is probably irritated from the chemotherapy or other drugs. It really sucks because the anti-nausea medications available are much more effective than anything they can give me for the pains I'm feeling now. It makes eating unpleasant, but I'm getting constipated anyway. Damn fludarabine.
Today was my last day of chemotherapy. Tomorrow morning I'll be irradiated. It should only take about twenty minutes.
Platelets 143
WBC 2.9
|Neutrophils| 2.8
Creatinine 1.15
My day started out by me throwing up all over the floor next to my bed. That kinda set the tone for the rest of the day, although the biggest problem I'm having now isn't with nausea. My stomach is really upset, kinda like indigestion. The doctors say the lining is probably irritated from the chemotherapy or other drugs. It really sucks because the anti-nausea medications available are much more effective than anything they can give me for the pains I'm feeling now. It makes eating unpleasant, but I'm getting constipated anyway. Damn fludarabine.
Today was my last day of chemotherapy. Tomorrow morning I'll be irradiated. It should only take about twenty minutes.
26 February 2010
Day -3
Hemoglobin 8.7
Platelets 174
WBC 4.8
|Neutrophils| 4.7
Creatinine 1.15
Today I began my two immunosuppressant drugs: Cyclosporin and MMF. They make me feel terrible. Just nauseous and ill. Unfortunately I'll be on them for quite some time. The cyclosporin is hard on kidneys too, so they will be even more closely monitored for function while I'm on the drug. The doctors will also closely monitor the level of the drug in my system to ensure proper therapeutic levels (such that the level of the drug doesn't get too high and risk kidney damage).
Today I also went down to the radiology oncology department for final measurements for my total body irradiation on sunday. It only took a half hour or so but I was feeling really ill. I would rather have been sleeping. That's mainly what I do these days, between the chemo drugs dragging me down and the anti-nausea meds making me tired, so I sleep it off.
Tomorrow is my last day of Fludarabine. Then I have TBI on Sunday and cells on Monday. Mitch has been up to receive his growth factor injections over the past few days and will continue through Monday. He says it makes him feel odd, giving him unusual and random body pains. Other than that he says it's not too bad.
Platelets 174
WBC 4.8
|Neutrophils| 4.7
Creatinine 1.15
Today I began my two immunosuppressant drugs: Cyclosporin and MMF. They make me feel terrible. Just nauseous and ill. Unfortunately I'll be on them for quite some time. The cyclosporin is hard on kidneys too, so they will be even more closely monitored for function while I'm on the drug. The doctors will also closely monitor the level of the drug in my system to ensure proper therapeutic levels (such that the level of the drug doesn't get too high and risk kidney damage).
Today I also went down to the radiology oncology department for final measurements for my total body irradiation on sunday. It only took a half hour or so but I was feeling really ill. I would rather have been sleeping. That's mainly what I do these days, between the chemo drugs dragging me down and the anti-nausea meds making me tired, so I sleep it off.
Tomorrow is my last day of Fludarabine. Then I have TBI on Sunday and cells on Monday. Mitch has been up to receive his growth factor injections over the past few days and will continue through Monday. He says it makes him feel odd, giving him unusual and random body pains. Other than that he says it's not too bad.
25 February 2010
Day -4
Hemoglobin 9.0
Platelets 174
WBC 7.8
|Neutrophils| 7.4
Creatinine 1.19
Still having lots of nausea today and high blood glucose. My line is feeling better but still sore where it drops into the vein. Tomorrow I start my meds to further suppress my immune system as well as to prevent rejection of the donor system. Cyclosporin is one of them which is known to be hard on the kidneys. Hopefully it won't begin causing problems, my creatinine has been good so far this round.
24 February 2010
Day -5
Hemoglobin 8.9
Platelets 145
WBC 5.9
|Neutrophils| 5.0
Creatinine 1.26
Today was rough. Not only was my line still sore but I spent most of the day really nauseous and over-all gross feeling. I think the chemo I got yesterday is responsible. Plus today my glucose has been a rollercoaster which hasn't helped anything.
It was an uneventful day. One does of fludarabine all day. Should be the same for the next three days.
Platelets 145
WBC 5.9
|Neutrophils| 5.0
Creatinine 1.26
Today was rough. Not only was my line still sore but I spent most of the day really nauseous and over-all gross feeling. I think the chemo I got yesterday is responsible. Plus today my glucose has been a rollercoaster which hasn't helped anything.
It was an uneventful day. One does of fludarabine all day. Should be the same for the next three days.
23 February 2010
Day -6
Hemoglobin 9.0
Platelets 110
WBC 2.6
|Neutrophils| 1.3
Creatinine 1.33
Today I started two chemotherapy drugs. The first, Fludarabine, I've taken before as part of my previous FLAG treatments. I responded well then, so the doctors expect that I should do well on it again, even though I believe it is a stronger dose. My first dose was today and I'll receive four more doses over the next four days. The second drug is called Cytoxan. This is my first time taking this drug and I only take one dose, which was today. This drugs' major side effect is bladder irritation. It can cause the lining to sluff off, making for painful urination as you pee out the sluffed tissue and, of course, blood that goes with it. I'm on another drug to help prevent any bladder trouble, plus they're pushing fluids and making me pee every two hours for all of today and tomorrow. Continually voiding my bladder should help prevent the drug from accumulating in the bladder and, thus, help prevent irritation.
Fludarabine also means I'm back on Decadron (the anti-nausea steroids), and that means I'm back on an insulin drip. My glucose has been bouncing up and down all day, it seems anytime I eat the Insulin I bolus is ineffective at adequately covering the carbs I ate.
I've also been nauseous from one of the drugs I'm on. My line has been hurting today still, not worse than yesterday but it is still very sore. Hopefully tomorrow it will begin to feel better.
Platelets 110
WBC 2.6
|Neutrophils| 1.3
Creatinine 1.33
Today I started two chemotherapy drugs. The first, Fludarabine, I've taken before as part of my previous FLAG treatments. I responded well then, so the doctors expect that I should do well on it again, even though I believe it is a stronger dose. My first dose was today and I'll receive four more doses over the next four days. The second drug is called Cytoxan. This is my first time taking this drug and I only take one dose, which was today. This drugs' major side effect is bladder irritation. It can cause the lining to sluff off, making for painful urination as you pee out the sluffed tissue and, of course, blood that goes with it. I'm on another drug to help prevent any bladder trouble, plus they're pushing fluids and making me pee every two hours for all of today and tomorrow. Continually voiding my bladder should help prevent the drug from accumulating in the bladder and, thus, help prevent irritation.
Fludarabine also means I'm back on Decadron (the anti-nausea steroids), and that means I'm back on an insulin drip. My glucose has been bouncing up and down all day, it seems anytime I eat the Insulin I bolus is ineffective at adequately covering the carbs I ate.
I've also been nauseous from one of the drugs I'm on. My line has been hurting today still, not worse than yesterday but it is still very sore. Hopefully tomorrow it will begin to feel better.
22 February 2010
The Beginning of the End
Day -7
Here I am, coming at you live (again) from the University of Minnesota Medical Center - Fairview. Only this time I'm on unit 4B in room 224 and I'm glad to say it's one of the large-sized rooms. Not that I can have a ton of people in here, but I'll probably have them bring in a treadmill (since I won't be able to leave my room starting tomorrow). Plus I have a table and chairs. Everything else is pretty standard.
My central line was placed this morning. It took about an hour and everything went well. They went in at my neck and inserted the catheter into the vein (the red spot near my collar in the photo, it's actually an incision about a centimeter in length). They then tunneled the remainder of the catheter under my skin down to my chest. It's cool, you can feel the tube running under the skin. The entire area is terribly sore though. My nurse says it'll take a couple days for it to not hurt anymore , but tomorrow the pain will probably be worse. I just can't move my head or arm or swallow without it hurting. Super annoying.
I can't say that I'm thrilled to be back in the hospital, but the feeling is bittersweet. I'm glad that it is finally transplant time but those two weeks I spent out of the hospital were mighty enjoyable. It's hard to get excited for something that will probably be such a challenge; I feel good and I'll be sad to lose that. But it is all in the name of progress and I certainly wouldn't change any of my plans. I'm ready to be cured.
Other than the line placement I didn't have anything done today. Tomorrow I begin chemotherapy. It'll be two drugs, Fludarabine (which I've had before during FLAG) and a new one... but I'll get into that tomorrow.
Here I am, coming at you live (again) from the University of Minnesota Medical Center - Fairview. Only this time I'm on unit 4B in room 224 and I'm glad to say it's one of the large-sized rooms. Not that I can have a ton of people in here, but I'll probably have them bring in a treadmill (since I won't be able to leave my room starting tomorrow). Plus I have a table and chairs. Everything else is pretty standard.
My central line was placed this morning. It took about an hour and everything went well. They went in at my neck and inserted the catheter into the vein (the red spot near my collar in the photo, it's actually an incision about a centimeter in length). They then tunneled the remainder of the catheter under my skin down to my chest. It's cool, you can feel the tube running under the skin. The entire area is terribly sore though. My nurse says it'll take a couple days for it to not hurt anymore , but tomorrow the pain will probably be worse. I just can't move my head or arm or swallow without it hurting. Super annoying.
I can't say that I'm thrilled to be back in the hospital, but the feeling is bittersweet. I'm glad that it is finally transplant time but those two weeks I spent out of the hospital were mighty enjoyable. It's hard to get excited for something that will probably be such a challenge; I feel good and I'll be sad to lose that. But it is all in the name of progress and I certainly wouldn't change any of my plans. I'm ready to be cured.
Other than the line placement I didn't have anything done today. Tomorrow I begin chemotherapy. It'll be two drugs, Fludarabine (which I've had before during FLAG) and a new one... but I'll get into that tomorrow.
17 February 2010
Day -12
IRael and I met with Dr. Oran yesterday. All my tests returned expected results so Oran gave her approval for the transplant. I signed about 30 pages of documents and we decided Monday, 22 January would be when I am admitted. She wanted to have those cardiology tests performed prior to transplant. She said the results won't have any effect on my transplant status, just better to have the results than not.
So yesterday I had an echocardiogram and tomorrow I have an adenosine stress test. I also met with my nephrologist today to discuss my kidneys and blood pressure. That'll do it for appointments. Now I just wait for Monday.
So yesterday I had an echocardiogram and tomorrow I have an adenosine stress test. I also met with my nephrologist today to discuss my kidneys and blood pressure. That'll do it for appointments. Now I just wait for Monday.
13 February 2010
Workup Week Update
Yesterday concluded my testing for workup week. I spent nearly 25 hours at clinics over four days being poked, scanned, and measured. I'm glad to report, to my knowledge, almost all the tests came back well. The only abnormal result I'm aware of was my ECG - an electronic measurement of the heart. I saw a cardiologist about it yesterday and he was confidant my heart was fine, there just may be a minor underlying issue that requires further investigation. Nothing that will hold up my transplant, just something that it would be good to know. I will have a couple tests performed once I'm stabilized post-transplant.
I'm also pleased to report that my infectious disease doctor - the doc who monitors my fungus - couldn't be happier with my current state. My chest CT this week showed absolutely no signs of infection. No fungus, no bacteria, nothing. Furthermore she believes I'm in much better condition now prognostically than I was in December. Waiting the extra two months (albeit because of a relapse) afforded me the ability to enter transplant much healthier compared to December. Not that I was necessarily unhealthy then, but I still had pneumonia and was still close to my surgery date. Now she can find absolutely nothing on my scans and believes it is likely the fungus will give me minimal problems, if any, during transplant. She said several times how impressed she was with my ability to heal and how far I have come. It was great to hear.
The next step is to meet with Dr. Oran on Tuesday. There she will discuss all my test results and give her final recommendation for or against transplant. If she gives the go ahead, my nurse coordinator, whom I met with this week, said I will most likely be admitted either Thursday or Friday, 18 or 19 Feb (less than a week!).
In the transplant system, days are numbered in reference to the day I will receive the donor cells. This day is referred to as Day 0. Any day before that is a negative day; any day after is a positive day, counting consecutively up or down.
On my admission date (Day -7) I will report to the hospital and first have a central line placed. This is similar to a PICC line in that it will be used to deliver drugs and draw blood. Instead of being located in my arm, however, the access ports will be located on the right side of my chest. The tube will then be tunneled under my skin up towards my neck. It will enter one of the large veins in my neck and travel to my superior vena cava, ending just outside the opening to the right atrium of my heart. The advantages of a central line over a PICC is, since it is tunneled under the skin before entering a vein instead of inserting directly into a vein, the chance of sepsis (an infection in the blood) is greatly reduced. This is especially important during transplant since my immune system will be weakened for a much greater period than with regular chemotherapy. It will take about an hour to place the line. Once it is in I will be brought up to the transplant ward. The first day will be mainly administrative work prepping for the upcoming procedures, so I won't have anything else done that day.
Once on the transplant ward I won't be allowed to leave my room until my counts return. I can have visitors as long as they're not ill, but only three additional people are allowed in my room at a time. There are special air filters in each room to remove airborne pathogens, but they overload if more than four people are present. They will bring exercise equipment into my room to allow me to be active. I'm allowed to have outside food brought to me (thankfully!) and I'll have access to a refrigerator so I can keep cold snacks around.
I will begin five days of chemotherapy on Day -6 in order to suppress my immune system in preparation to receive the donor cells. I will also begin immunosuppressive drugs starting a few days before Day 0. On Day -1 I will have total body irradiation (TBI) to further suppress my immune system. The dose I'm receiving is 200 centiGray (cGy) (1 Gray = 100 rad), which is a relatively low dose. In comparison, if I had a kidney tumor I would receive a radiation dose of 3000 cGy; if I had a brain tumor I would receive 5000 cGy. Since it is such a low dose the likelihood of side effects is minimal (although everyone reacts differently of course). The doctors said the most likely short-term side effects I'd have would be nausea and hair loss. The likelihood of more serious long-term side effects - organ damage, sterility, decreased hormone production, and secondary cancers - are also minimized. Cataracts are still a possibility, even at this dose, but I was assured if they did occur they're easily treated. They wouldn't likely appear for 15-20 years as well.
Day 0 would be when I would receive the harvested stem cells from Mitch. They would be infused similar to any other blood product. A very anticlimactic event, as Dr. Oran put it.
Once the cells are infused I again will play the waiting game. It can take anywhere between 12 and 30+ days for my counts to return and I won't be discharged until after my WBC is over 1000 cells/µL (1.0 on my scale from before). When my counts do return it will be a much slower/less dynamic process compared to when they returned after chemotherapy. This is because it will take time for the donor system to implant and begin to function normally. The lab will monitor the percentage of WBCs that are mine compared to the donor by comparing the DNA of the cells present (how cool is that!). The type of chemo and radiation I'm receiving only suppresses my immune system, it doesn't wipe it out completely. So initially my counts may be a mixture of Mitch's and my cells. Eventually the donor system will destroy all my remaining cells, but this may take months. My blood type will also switch to Mitch's (from A to O - again, super cool!!), but this process may take up to a year.
Once my counts are up and if I'm in otherwise good general health, am stable and eating, I will be discharged. For some patients this is as early as Day 12! The transplant center requires that I have a 24 hour/day caregiver through Day 100. This person or these people will ensure that I'm taking my medications on time, watch me for signs of complications, and transport me to the clinic for appointments (which will be daily at first). Usually by Day 100 most patients have stabilized and are feeling well enough to not need additional assistance.
That's a quick run-down of what will happen over the coming months. A lot of what will happen depends on how things go. If I have lots of complications or other problems I'll be hospitalized longer than if things go smoothly. They say a related donor like Mitch who's a 100% match is the best possible donor scenario, so hopefully complications related to donor-recipient matching will be minimal. I only have to watch out for infection and hope my kidneys and other organs cooperate.
All this is heavy, but I'm ready to be well again and I know this is how I will get there. It won't be an easy spring, but I can make it through this. I've come through so much, I'm certainly not gonna stumble this close to the finish line.
I'm also pleased to report that my infectious disease doctor - the doc who monitors my fungus - couldn't be happier with my current state. My chest CT this week showed absolutely no signs of infection. No fungus, no bacteria, nothing. Furthermore she believes I'm in much better condition now prognostically than I was in December. Waiting the extra two months (albeit because of a relapse) afforded me the ability to enter transplant much healthier compared to December. Not that I was necessarily unhealthy then, but I still had pneumonia and was still close to my surgery date. Now she can find absolutely nothing on my scans and believes it is likely the fungus will give me minimal problems, if any, during transplant. She said several times how impressed she was with my ability to heal and how far I have come. It was great to hear.
The next step is to meet with Dr. Oran on Tuesday. There she will discuss all my test results and give her final recommendation for or against transplant. If she gives the go ahead, my nurse coordinator, whom I met with this week, said I will most likely be admitted either Thursday or Friday, 18 or 19 Feb (less than a week!).
In the transplant system, days are numbered in reference to the day I will receive the donor cells. This day is referred to as Day 0. Any day before that is a negative day; any day after is a positive day, counting consecutively up or down.
On my admission date (Day -7) I will report to the hospital and first have a central line placed. This is similar to a PICC line in that it will be used to deliver drugs and draw blood. Instead of being located in my arm, however, the access ports will be located on the right side of my chest. The tube will then be tunneled under my skin up towards my neck. It will enter one of the large veins in my neck and travel to my superior vena cava, ending just outside the opening to the right atrium of my heart. The advantages of a central line over a PICC is, since it is tunneled under the skin before entering a vein instead of inserting directly into a vein, the chance of sepsis (an infection in the blood) is greatly reduced. This is especially important during transplant since my immune system will be weakened for a much greater period than with regular chemotherapy. It will take about an hour to place the line. Once it is in I will be brought up to the transplant ward. The first day will be mainly administrative work prepping for the upcoming procedures, so I won't have anything else done that day.
Once on the transplant ward I won't be allowed to leave my room until my counts return. I can have visitors as long as they're not ill, but only three additional people are allowed in my room at a time. There are special air filters in each room to remove airborne pathogens, but they overload if more than four people are present. They will bring exercise equipment into my room to allow me to be active. I'm allowed to have outside food brought to me (thankfully!) and I'll have access to a refrigerator so I can keep cold snacks around.
I will begin five days of chemotherapy on Day -6 in order to suppress my immune system in preparation to receive the donor cells. I will also begin immunosuppressive drugs starting a few days before Day 0. On Day -1 I will have total body irradiation (TBI) to further suppress my immune system. The dose I'm receiving is 200 centiGray (cGy) (1 Gray = 100 rad), which is a relatively low dose. In comparison, if I had a kidney tumor I would receive a radiation dose of 3000 cGy; if I had a brain tumor I would receive 5000 cGy. Since it is such a low dose the likelihood of side effects is minimal (although everyone reacts differently of course). The doctors said the most likely short-term side effects I'd have would be nausea and hair loss. The likelihood of more serious long-term side effects - organ damage, sterility, decreased hormone production, and secondary cancers - are also minimized. Cataracts are still a possibility, even at this dose, but I was assured if they did occur they're easily treated. They wouldn't likely appear for 15-20 years as well.
Day 0 would be when I would receive the harvested stem cells from Mitch. They would be infused similar to any other blood product. A very anticlimactic event, as Dr. Oran put it.
Once the cells are infused I again will play the waiting game. It can take anywhere between 12 and 30+ days for my counts to return and I won't be discharged until after my WBC is over 1000 cells/µL (1.0 on my scale from before). When my counts do return it will be a much slower/less dynamic process compared to when they returned after chemotherapy. This is because it will take time for the donor system to implant and begin to function normally. The lab will monitor the percentage of WBCs that are mine compared to the donor by comparing the DNA of the cells present (how cool is that!). The type of chemo and radiation I'm receiving only suppresses my immune system, it doesn't wipe it out completely. So initially my counts may be a mixture of Mitch's and my cells. Eventually the donor system will destroy all my remaining cells, but this may take months. My blood type will also switch to Mitch's (from A to O - again, super cool!!), but this process may take up to a year.
Once my counts are up and if I'm in otherwise good general health, am stable and eating, I will be discharged. For some patients this is as early as Day 12! The transplant center requires that I have a 24 hour/day caregiver through Day 100. This person or these people will ensure that I'm taking my medications on time, watch me for signs of complications, and transport me to the clinic for appointments (which will be daily at first). Usually by Day 100 most patients have stabilized and are feeling well enough to not need additional assistance.
That's a quick run-down of what will happen over the coming months. A lot of what will happen depends on how things go. If I have lots of complications or other problems I'll be hospitalized longer than if things go smoothly. They say a related donor like Mitch who's a 100% match is the best possible donor scenario, so hopefully complications related to donor-recipient matching will be minimal. I only have to watch out for infection and hope my kidneys and other organs cooperate.
All this is heavy, but I'm ready to be well again and I know this is how I will get there. It won't be an easy spring, but I can make it through this. I've come through so much, I'm certainly not gonna stumble this close to the finish line.
10 February 2010
The Simple Things in Life
Today I finished my IV antibiotic. That means my PICC line is no longer needed and was removed! The best part of losing my PICC isn't that I don't need to care for it anymore. It's that I can now shower without a bag around my arm. Seriously! I haven't had that luxury since June 2009. It was great. :D
You can see where the two PICC lines were placed in the inside of my left arm. The larger, darker spot on the right is where the PICC that lasted from July to January was. The smaller, red spot on the left is where the line was removed today.
You can see where the two PICC lines were placed in the inside of my left arm. The larger, darker spot on the right is where the PICC that lasted from July to January was. The smaller, red spot on the left is where the line was removed today.
07 February 2010
An Update....Finally!
Sorry for the lack of posts. Here's a rundown of what's happened since my last update.
I started spiking fevers the night after my last post. For about a week I ran temps up to 104˚F. I spent almost all that time sleeping. They eventually determined that my PICC line had become infected. Unfortunately that meant it needed to be removed. They couldn't put a new one in until after the infection was under control, so that meant I had to deal with an IV in my hand. The worst part of it is that they can't do blood draws from an IV, so I had to get stuck, sometimes up to three times a day, to draw blood.
In the photo, you can see the three ports in the center, that's what was outside my body. The rest of that tube went through a vein in my arm, through veins in my chest, to my superior vena cava. The tip ended just outside my heart. It's about 46cm total in length.
After about a week of treatment the infection came under control. I was terribly weak from the fevers and not eating, so I spent the next week sleeping and gaining my strength back. I felt decent but was easily tired. And I still had no PICC.
I had a bone marrow biopsy on Wednesday, 03 February. On Friday I received the results: <1% blasts! I am back in remission. By then my counts had also recovered. I was also surprised to learn that they were discharging me that day too! I was being sent home on IV antibiotics, so I had another PICC line placed (so I could dose at home) and they sent me on my way.
So now I'm home and enjoying every minute of it! I get tired fast and take lots of naps, but it is such a pleasure to be sleeping in my own bed, eating my own food, and seeing Yuki.
Tuesday morning I start workup week again in preparation for transplant. Dr. Oran said things should happen quickly, so I might be back in as early as the end of next week. Definitely before the end of the month, assuming everything goes smoothly during workup.
Thank you to everyone who has sent cards, visited, or emailed. I know I'm terrible at replying, but be assured I have read everything and appreciate all the thoughts and wishes while I was hospitalized. I won't be posting to this blog everyday while I'm out, but will keep it updated as things progress.
I started spiking fevers the night after my last post. For about a week I ran temps up to 104˚F. I spent almost all that time sleeping. They eventually determined that my PICC line had become infected. Unfortunately that meant it needed to be removed. They couldn't put a new one in until after the infection was under control, so that meant I had to deal with an IV in my hand. The worst part of it is that they can't do blood draws from an IV, so I had to get stuck, sometimes up to three times a day, to draw blood.
RIP PICC Line
July 2009 - 28 January 2010
After about a week of treatment the infection came under control. I was terribly weak from the fevers and not eating, so I spent the next week sleeping and gaining my strength back. I felt decent but was easily tired. And I still had no PICC.
I had a bone marrow biopsy on Wednesday, 03 February. On Friday I received the results: <1% blasts! I am back in remission. By then my counts had also recovered. I was also surprised to learn that they were discharging me that day too! I was being sent home on IV antibiotics, so I had another PICC line placed (so I could dose at home) and they sent me on my way.
So now I'm home and enjoying every minute of it! I get tired fast and take lots of naps, but it is such a pleasure to be sleeping in my own bed, eating my own food, and seeing Yuki.
Tuesday morning I start workup week again in preparation for transplant. Dr. Oran said things should happen quickly, so I might be back in as early as the end of next week. Definitely before the end of the month, assuming everything goes smoothly during workup.
Thank you to everyone who has sent cards, visited, or emailed. I know I'm terrible at replying, but be assured I have read everything and appreciate all the thoughts and wishes while I was hospitalized. I won't be posting to this blog everyday while I'm out, but will keep it updated as things progress.
26 January 2010
Day 35
Hemeglobin 9.9
Platelets 17
WBC 0.1
Creatinine 1.19
Today there was a bit of excitement around here. I was sleeping when the nurse began infusing platelets around 1030. A little after 1100 I woke up; it felt like there was an elephant sitting on my chest and my entire body itched like crazy. I started coughing and I realized what was going on: I was having an allergic reaction to the platelets for the first time. Thirty seconds later I had nurses and doctors running in and out while I sat on the edge of the bed wheezing. The platelets caused a systemic allergic reaction, much like someone with food allergies after eating a peanut. My bronchi became inflamed and started tightening up, making it difficult to breathe and my entire body broke out in hives. They gave me benadryl and corticosteroids to help calm the reaction and paged respiratory therapy stat. They showed up after a couple minutes and gave me a nebulizer of albuterol to open my airways. The drugs made me sleepy but I felt better fast.
Reactions to blood products are common and are more likely to occur the more blood products you receive. After I recovered they drew my blood for testing against the platelets I received to see what went wrong. They found that the platelets themselves were not the problem. There was also no trace of bacteria in the platelets that could've caused the reaction. The lab figured that it was caused by a protein impurity, something that can happen from time to time. A more aggressive pre-infusion medication plan should help prevent a future reaction.
Otherwise things remain well.
Platelets 17
WBC 0.1
Creatinine 1.19
Today there was a bit of excitement around here. I was sleeping when the nurse began infusing platelets around 1030. A little after 1100 I woke up; it felt like there was an elephant sitting on my chest and my entire body itched like crazy. I started coughing and I realized what was going on: I was having an allergic reaction to the platelets for the first time. Thirty seconds later I had nurses and doctors running in and out while I sat on the edge of the bed wheezing. The platelets caused a systemic allergic reaction, much like someone with food allergies after eating a peanut. My bronchi became inflamed and started tightening up, making it difficult to breathe and my entire body broke out in hives. They gave me benadryl and corticosteroids to help calm the reaction and paged respiratory therapy stat. They showed up after a couple minutes and gave me a nebulizer of albuterol to open my airways. The drugs made me sleepy but I felt better fast.
Reactions to blood products are common and are more likely to occur the more blood products you receive. After I recovered they drew my blood for testing against the platelets I received to see what went wrong. They found that the platelets themselves were not the problem. There was also no trace of bacteria in the platelets that could've caused the reaction. The lab figured that it was caused by a protein impurity, something that can happen from time to time. A more aggressive pre-infusion medication plan should help prevent a future reaction.
Otherwise things remain well.
25 January 2010
Day XXXIV
Hemoglobin 7.5
Platelets 24
WBC 0.1
Creatinine 1.27
I've had this happen in the past: I will wake up with a random song stuck in my head. Any song, even ones I don't particularly like. And it happens on days when I wake up without an alarm or other input, so I don't think the song is suggested to me while I sleep. Today it was "Octopus's Garden" by the Beatles. It used to happen several times a week, but it's been a few months. It's weird, I've been meaning to write them down and look for a pattern.
Two packets of blood today and some platelets. Other things are going well, my muscle pain is less today. My eyesight has also been improving in my right eye. I still have the floater in my left, but reading things at a close distance has become a lot easier.
I've started reading, my first non-textbook in probably five years: "The Education of Henry Adams" by Henry Adams. It's an autobiography that focuses on Adams' views on how to educate a man. It topped Modern Library's list of best non-fiction books of the 20th century. Hopefully I'll enjoy it.
Platelets 24
WBC 0.1
Creatinine 1.27
I've had this happen in the past: I will wake up with a random song stuck in my head. Any song, even ones I don't particularly like. And it happens on days when I wake up without an alarm or other input, so I don't think the song is suggested to me while I sleep. Today it was "Octopus's Garden" by the Beatles. It used to happen several times a week, but it's been a few months. It's weird, I've been meaning to write them down and look for a pattern.
Two packets of blood today and some platelets. Other things are going well, my muscle pain is less today. My eyesight has also been improving in my right eye. I still have the floater in my left, but reading things at a close distance has become a lot easier.
I've started reading, my first non-textbook in probably five years: "The Education of Henry Adams" by Henry Adams. It's an autobiography that focuses on Adams' views on how to educate a man. It topped Modern Library's list of best non-fiction books of the 20th century. Hopefully I'll enjoy it.
24 January 2010
Day 33
Hemoglobin 8.1
Platelets 33
WBC 0.1
That's my namecard outside the door to my room. I've been considered "Name Alert" for about a week now, meaning that two patients in the same ward have similar last names and doctors, etc need to not be fooled. I'm surprised at how often this is an issue. Especially at first, I had several doctors and technicians enter my room only to discover I'm not who they're looking for. Obviously doctors like Oran know me and don't make this sort of mistake. But the doctors who make inpatient rounds for different services are regularly changing, and I'm often meeting new people. Today my weekend endocrinologist came in and told me she walked into my doppleganger's room by mistake. It's a relief how quickly any mistake is realized. The worst consequence I've experienced has been receiving the wrong food tray. Safeguards like bar coded patient wristbands help protect from serious mistakes.
Drs. Oran and Zilla outlined their plan for me today. I will have a biopsy done around day 21. It could be a few days earlier depending on how quickly my counts return. If the biopsy is clear of blasts and my health remains well I will be "rushed" to the transplant ward. Not literally, but the doctors agree there should be no unnecessary delays and things should happen quickly. That's what I was hoping they'd say, although I would've enjoyed being home for a week.
One of the antibiotics I take can cause muscle soreness, so I've been switched off it and onto a penicillin. We'll see if that helps. Other things are about the same. I received blood products yesterday so I'm feeling energetic today. But since my counts are up today I didn't get any blood products, so tomorrow I'll be sleepy.
Platelets 33
WBC 0.1
Drs. Oran and Zilla outlined their plan for me today. I will have a biopsy done around day 21. It could be a few days earlier depending on how quickly my counts return. If the biopsy is clear of blasts and my health remains well I will be "rushed" to the transplant ward. Not literally, but the doctors agree there should be no unnecessary delays and things should happen quickly. That's what I was hoping they'd say, although I would've enjoyed being home for a week.
One of the antibiotics I take can cause muscle soreness, so I've been switched off it and onto a penicillin. We'll see if that helps. Other things are about the same. I received blood products yesterday so I'm feeling energetic today. But since my counts are up today I didn't get any blood products, so tomorrow I'll be sleepy.
23 January 2010
Day 32
Hemoglobin 8.7
Platelets 21
WBC 0.1
Creatinine 1.16
Here's a fun statistic for you to celebrate the start of my second month of incarceration hospitalization: I've spent 110 days in a hospital since being diagnosed 31 May (that's 46.2% of the days between then and now!). Here's the breakdown: 65 days when I was diagnosed, 13 in October for surgery, and 32 so far recently. Considering a conservatively estimated two weeks until my counts return then three weeks for transplant, I'm looking at a grand total inpatient day count of around 150 for a period less than a year. No wonder I feel like I didn't get much done in 2009..
Now that's about $255/day for a hospital room, plus doctors, plus services, plus medications, plus.... :)
Day 11 of chemo round four. My muscles are sore to the touch. Dr. Oran didn't have much to say about it, things like this can happen with how low my platelets have been. I had a condition called petechia when I was diagnosed - tons of tiny hemorrhages that cause a rash because of low platelet counts - and this soreness reminds me of that, but I don't have any rash. It's not dangerous, just annoying because I can't get comfortable..
I've been having low glucose all day, endocrinology is slowly stepping down my basal rates. Otherwise things remain about the same.
Platelets 21
WBC 0.1
Creatinine 1.16
Here's a fun statistic for you to celebrate the start of my second month of incarceration hospitalization: I've spent 110 days in a hospital since being diagnosed 31 May (that's 46.2% of the days between then and now!). Here's the breakdown: 65 days when I was diagnosed, 13 in October for surgery, and 32 so far recently. Considering a conservatively estimated two weeks until my counts return then three weeks for transplant, I'm looking at a grand total inpatient day count of around 150 for a period less than a year. No wonder I feel like I didn't get much done in 2009..
Now that's about $255/day for a hospital room, plus doctors, plus services, plus medications, plus.... :)
Day 11 of chemo round four. My muscles are sore to the touch. Dr. Oran didn't have much to say about it, things like this can happen with how low my platelets have been. I had a condition called petechia when I was diagnosed - tons of tiny hemorrhages that cause a rash because of low platelet counts - and this soreness reminds me of that, but I don't have any rash. It's not dangerous, just annoying because I can't get comfortable..
I've been having low glucose all day, endocrinology is slowly stepping down my basal rates. Otherwise things remain about the same.
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