2.5 years post-transplant, here's my recovery status:
Medicines
I had a lot of acute GVH of the skin, and almost no other GVH. They say to avoid rash on over 50% of your body, but I was regularly over that. The rash was red, had bumps, but only itched a little. It did not hurt.
To get rid of it, we had to go up to 30mg of Prednisone, a steroid, in the summer of 2013. We've been easing down ever since. Because I had pneumonia in January, 2014, the doctors have been more aggressive in trying to reduce my immunosuppressives.
As a result, I am now at 7.5 mg of Prednisone and a half gram of Tacrolimus (ProGraf). The doctors dropped my antifungal (Voriconazole, and used to be Fluconazole) at the last appointment, July 25. They said that would reduce the immunosuppressive effect of the ProGraf, which is already at an amount they call minimal.
I still take an antibiotic and antiviral every day as a backup because of the mild immunosuppression. I also take Bactrim (another antibiotic) three times a week to prevent pneumonia. Obviously, that didn't work, but I'm still taking it.
Health
I have been on Coumadin (Warfarin), a blood thinner for almost a year because I had my third post-transplant blood clot last fall. It's also the third blood clot of my life. Those can be painful.
Throughout 2013, and maybe some of 2012, I had some tingling, numbness, and pain (neuropathy?) in my feet. It got worse throughout 2013, then was steady in 2014 until April. In April, my ProGraf was dropped in half to the 500 mg I take now. My feet began improving immediately, and my blood thinned to an almost dangerous level over the next couple weeks. We had to lower the amount of Coumadin I was taking.
I think the ProGraf was thickening my blood, causing the clots when I didn't take Coumadin, and combatting the Coumadin when I did. Dropping the ProGraf made the Coumadin work much better.
We dropped the Prednisone again 7/25, and now, just 3 weeks later, I have no feet problems. They feel great, and I am back to walking and even running some. I love it, though the year of foot pain that was increased by walking has left me weaker and less motivated.
I am pressing through anyway.
I am also getting stronger faster than I was. Yay! I'm still not back to my old average strength self, but I'm close.
I did a plank (pushup position but with elbows on the floor rather than hands) and held it for 90 seconds the other night. That's pretty good for an old guy like me. The sad part is that I can't blame my potgut on weak stomach muscles. I am just fat.
Only 20 pounds to lose, though.
Chronic Fatigue Syndrome
After 2012 (transplant performed 1/17/2012, very thorough preparation, including radiation, full body and brain), my problems with fatigue were much better. Really, I was doing somewhat okay even 6 months post-transplant, in summer of 2012.
I'd say throughout 2013 I had what I call "fatigue days" almost weekly, maybe every two weeks. I dragged, and trying to exercise just made it worse. On those days I had no appetite, and usually me energy and appetite both returned at the same time.
The fatigue days still happen, but more rarely, and often I can point to a cause, somewhere that I've overdone it physicall or mentally.
I can work 40 hours per week at a desk with no problem.
I own a distribution business. We moved our warehouse between Christmas and New Years, Dec. 25-30, 2014. On one of the first days I helped load pallet racks for three hours, pulling 10 pound to 30 pound boxes off pallets and handing them to someone else to put on shelves. I was very proud of myself.
I was useless the rest of the week. I definitely could not do an active job like that for more than 10 hours per week. Of course, I'm 53, and I haven't been able to exercise like a healthy person for three years now. Now that my feet are better and I'm responding to exercise better, that may change.
Eye GVH
I still have the occassional attack of eye GVH, but I no longer need any medication to treat it. I started expressing oil from my eyelids, and that has eliminated all suffering from GVH of the eye.
Dry Eye Zone expresses concerns about my method. It has staved off GVH to the point that my eye doctor said my eyes are fine and that I don't need to see her anymore. Therefore, I am going to continue, but I can't recommend that to you, anyway. The warm compresses suggested on that site are surely a better idea, anyway.
Okay, thanks! This update was mostly to provide a comparison for others of you wondering if you're ever going to get better.
Showing posts with label bone marrow transplant. Show all posts
Showing posts with label bone marrow transplant. Show all posts
Thursday, August 14, 2014
Wednesday, July 23, 2014
Marrow Donors and Transplants
I haven't posted on here in a long time. There are some leftover issues, of course, but leukemia/BPDCN is pretty much in the past for me now. My "new normal" is a whole lot like my old one except that I'm slower and can't run very far.
Anyway, some asked me about being a marrow donor, and this discussion of bone marrow or stem cell donation seemed pretty informative, so I'm posting it here, too, just in case you find it helpful.
How to Donate Marrow
Just go to marrow.org and sign up. They will mail you a donor package with lots of information. You swab your cheek, put it in, uh, something they sent you, and you send it back. That's enough to find out if you _might_ be a match. That's it. The likelihood they'll call you is pretty slim. If they do, then they'll want blood to check your DNA for 10-14 genetic factors. If you're an exact match, or really close, and you're the only one, they'll call you. Giving marrow is, literally, a real pain in the butt for about a week. "Feels like a mule kicked you in the backside," I was told. Nowadays, they usually take stem cells. They give you medicine for a week that makes your marrow run wild and its stem cells pour into your bloodstream. Your bones ache for a week, and then they take the stem cells out with a machine very similar to a dialysis machine, the ache goes away, and you go home.
That's the whole process, but only 1 in 500 people who sign up are called on as donors. It takes that much to find "the match." So, for the most part, your action is just to order the kit and send in the swab. Easy.
I know of someone who had 50 people come up on the list as potential donors. Only 3 turned out after blood tests to both be willing and to be a good match. One turned out to be a perfect match.
For me, they found 3 potentials in the whole world and none of them were a workable match after blood tests. My brothers were a complete mismatch, and my sister was the lowest acceptable match. Fortunately, nowadays women donate their placentas and cord (at some hospitals) and cord blood doesn't have to match near as well as adult blood. I got cord blood, which is usually not preferred, but for someone as harshly prepped as I was, the immature baby immune system that those stem cells created in me turned out to be a blessing. It's not as strong as an adult transplant, so it kept me a little safer.
Is this TMI? This process is amazing to me. Some people really need an adult transplant because the new immune system has to go in and destroy any lurking cancer cells. They thought I was healthy enough and had a good enough attitude that they would just use a scorched earth policy on every possible hiding place they could think of. The baby immune system didn't have anything left to clean up.
Sometimes there is a battle between what is left of the patient's marrow and the donor marrow. I have a friend almost three years after transplant who still has 2% of his own old marrow. Not me. I was 100% donor the first time they checked because they did an excellent job getting my marrow to 0% even before the transplant.
Anyway, some asked me about being a marrow donor, and this discussion of bone marrow or stem cell donation seemed pretty informative, so I'm posting it here, too, just in case you find it helpful.
How to Donate Marrow
Just go to marrow.org and sign up. They will mail you a donor package with lots of information. You swab your cheek, put it in, uh, something they sent you, and you send it back. That's enough to find out if you _might_ be a match. That's it. The likelihood they'll call you is pretty slim. If they do, then they'll want blood to check your DNA for 10-14 genetic factors. If you're an exact match, or really close, and you're the only one, they'll call you. Giving marrow is, literally, a real pain in the butt for about a week. "Feels like a mule kicked you in the backside," I was told. Nowadays, they usually take stem cells. They give you medicine for a week that makes your marrow run wild and its stem cells pour into your bloodstream. Your bones ache for a week, and then they take the stem cells out with a machine very similar to a dialysis machine, the ache goes away, and you go home.
That's the whole process, but only 1 in 500 people who sign up are called on as donors. It takes that much to find "the match." So, for the most part, your action is just to order the kit and send in the swab. Easy.
I know of someone who had 50 people come up on the list as potential donors. Only 3 turned out after blood tests to both be willing and to be a good match. One turned out to be a perfect match.
For me, they found 3 potentials in the whole world and none of them were a workable match after blood tests. My brothers were a complete mismatch, and my sister was the lowest acceptable match. Fortunately, nowadays women donate their placentas and cord (at some hospitals) and cord blood doesn't have to match near as well as adult blood. I got cord blood, which is usually not preferred, but for someone as harshly prepped as I was, the immature baby immune system that those stem cells created in me turned out to be a blessing. It's not as strong as an adult transplant, so it kept me a little safer.
Is this TMI? This process is amazing to me. Some people really need an adult transplant because the new immune system has to go in and destroy any lurking cancer cells. They thought I was healthy enough and had a good enough attitude that they would just use a scorched earth policy on every possible hiding place they could think of. The baby immune system didn't have anything left to clean up.
Sometimes there is a battle between what is left of the patient's marrow and the donor marrow. I have a friend almost three years after transplant who still has 2% of his own old marrow. Not me. I was 100% donor the first time they checked because they did an excellent job getting my marrow to 0% even before the transplant.
Sunday, February 16, 2014
Exercise: We Can Do This!
The 30-degree weather seems to have moved on. It feels like a warm, summer day, but the high 50's temperatures today are actually just average for February in west Tennessee.
I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.
Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.
So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.
Possible.
I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.
Nope.
I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.
I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.
Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!
Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."
I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."
One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.
Here's to a slightly less stimulated appetite and less muscle-eating steroids.
Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.
This sounds like complaining, doesn't it?
I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.
I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.
I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.
I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.
I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.
I may have been guilty of feeling sorry for myself at that moment.
Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.
I have not suffered, at least not much.
To Fellow BPDCN Patients or Survivors
Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.
I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.
So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a week, but it is not dangerous.
Well worth it to save a life.
I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.
Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.
So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.
Possible.
I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.
Nope.
I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.
I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.
Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!
Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."
I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."
One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.
Here's to a slightly less stimulated appetite and less muscle-eating steroids.
Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.
This sounds like complaining, doesn't it?
I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.
I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.
I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.
I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.
I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.
I may have been guilty of feeling sorry for myself at that moment.
Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.
I have not suffered, at least not much.
To Fellow BPDCN Patients or Survivors
Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.
I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.
So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a week, but it is not dangerous.
Well worth it to save a life.
Thursday, August 4, 2011
August 4: Update
I've been telling the nurses that my blood counts are starting to go up tomorrow and that I'm going home on Monday.
I haven't been on my computer much since my update Monday morning. Monday and Tuesday, if I remember correctly, there were a lot of visitors. In my current condition, visiting for an hour or two with someone forces me to have to nap afterwards. Who'd have thought sitting up and talking could require so much energy!
Yesterday—Wednesday—I got up and tried to walk two miles. I made it, though I stopped 6 laps short so I could talk to someone. It was much harder than I expected because I knew my blood counts were pretty good (for a leukemia patient, in this case about 2/3 of the blood you have).
Afterward I went to my room, looked at the mail I haven't looked at, laid down, and had a total energy collapse. I spent the rest of the day laying in bed trying not to move.
I did have a slight temperature, but it never got out of the 99's except once when it was 100.1. The nurses tell me that sometimes this happen when your body begins to make blood cells again.
I'm counting on that being the case.
I decided yesterday to take this day to rest no matter how good I felt.
I feel like taking this day to rest :-D.
I hope this update isn't too boring. I try to put some storytelling energy into my blogs, but I just don't have any today. I'm not depressed, and I don't feel bad. I'm still at peace. I just have no energy.
Storytellers with no passion are not good storytellers. It's the cardinal sin of storytelling.
In case you're interested (am I sounding like Eeyore yet?), and in case I haven't already told you, here's what's going on.
This is the boring part, though I guess it's not so boring for the doctors that are monitoring the bacteria and the antibiotic in my blood. The doctors have kept my temperature under control for a week now, though, so I'm thinking they're doing an awesome job with this antibiotic.
Anyway, the boring part is just waiting around for my body to kick back on. That takes 10 to 14 days from "nadir," the low point of the chemotherapy. Nadir is usually designed to be at 14 days. Today is day 21 for me, so I've set my heart on having everything kick back on 3 days before what's normal because Dr. Strickland told me he's seen that happen before.
That would mean tomorrow's blood counts would be improved rather than down.
We'll see.
Either way, it's just a waiting game.
Once my blood counts get up enough, they'll release me. Specifically, they want to see my neutrophils at 500. Currently they're at 1.7% of 400, or about 6. (I think that's how it's calculated.)
So, we're not there yet.
After my neutrophils are 500, then I can go home. Two weeks later I come back in for a marrow biopsy to make sure things are still okay. Normally, they would then admit me to the hospital, but Dr. Reddy—my current attending physician; they rotate—tells me that they'll delay to let me go to a house church conference in Florida over Labor Day weekend.
I'll come back in the hospital for a couple weeks for a shorter round of chemo called a consolidation round, go home for a couple weeks, then do another consolidation round.
After that we head toward a bone marrow transplant.
In a bone marrow transplant, the doctors actually harvest bone marrow from the pelvis of the donor, making numerous tiny holes with a needle to extract the marrow. The donor is under general anesthetic and wakes up feeling like they've been kicked in the butt by a mule.
No stitches, no incisions. Just needle holes—a lot of them.
The soreness goes away in a week.
In a stem cell transplant, the doctors give the donor growth hormone that causes a lot of bone marrow stem cell production, so much that the stem cells enter the blood, and can be harvested there.
Then, they hook the donor to a machine, which takes blood out of one arm, extracts the stem cells, and puts it back in the other arm.
That's a lot easier on the donor, but there's enough differences between the results of the two methods that the transplant team usually chooses one over the other for one or more reasons.
For the patient, there is a massive chemotherapy dose for days before the transplant, completely wiping out his bone marrow. Not everyone can handle that, so it's a lot more viable for young patients. Dr. Strickland says that at 50 years old, I'm on the line between usually no problem and usually a problem.
For older folks, they sometimes try a less aggressive chemotherapy, and then depend on the new immune system to destroy any leftover cancer cells after the transplant.
The biggest complication that recipients face is Graft vs. Host disease. That's sort of the opposite of, say, a kidney transplant recipient rejecting a kidney. In Graft vs. Host disease, the transplant--the new immune system--rejects the body it's put in and begins to attack it.
You can imagine that's bad.
Apparently, there are drugs that control it, and GVH, as it's called, can vary from a skin rash to a fatal destruction of many bodily organs.
Apparently, it's hard to predict no matter how well or not well you're matched with a donor.
I talked to a man yesterday who had a bone marrow or stem cell transplant 6 years ago. I'd just been reading about transplants the night before, and I'd read that the first 6 months to a year can be pretty miserable with all the sorts of problems that are also side effects of chemotherapy: mouth sores, gastrointestinal problems, and graft vs. host disease with rashes and other symptoms.
So I asked him if it was rough. He paused a moment, trying to decide if he was going to discourage me, and then he said, "It was extremely rough for a year and a half. Better after that."
He then told me not to get him wrong, it was tolerable, just extremely rough.
Well, now he's relapsed. His transplant was for myelofibrosis, which often leads into AML. The transplant took for a while, but now he's got AML.
Life's not easy, and not everything we try has good results.
As he left the break room, he said, "But, hey, it's 2011, it's 5:30 in the morning, and the sun is still shining on my head, and for that I'm grateful."
Gosh, I love people like that.
So, I have a tough row to hoe.
For all of you who are proving to love me, apparently more than I love myself, which is very difficult, I want to remind you that from my perspective, this isn't about me. There are 7 billion people in this world. In general, one less doesn't make much a difference unless you can make your life count for something. I don't want my tombstone to say, "He scored 20,000 on such and such video game."
I don't need to change the world. I just want to be like George Bailey of It's a Wonderful Life and do what's in front of me to do.
A little pain and a little risk to get and give a lot of love. It's a good tradeoff.
There's two things that give me hope of making a difference in people's lives.
Same's true for all of us. Never underestimate yourself.
This is why it's all good.
This is the way, and I'm looking forward to walking in it.
My pillow case is covered in black hair now. My lips are cracking, probably from rinsing my mouth with salt water to take care of the sore on my tongue. The nurses gave me vaseline for my chapped lips, which works amazingly well ...
... both for healing my lips and for picking up hair off my pillow.
This morning, I washed my hair first, and then I had to rinse hair from my face and most of the rest of my body.
So, tired of chewing on hair, I'm buzzing it off today.
That's all the news I can think of!
This shawl has been a godsend, as low energy is usually combined with sudden chills.
Yesterday—Wednesday—I got up and tried to walk two miles. I made it, though I stopped 6 laps short so I could talk to someone. It was much harder than I expected because I knew my blood counts were pretty good (for a leukemia patient, in this case about 2/3 of the blood you have).
Afterward I went to my room, looked at the mail I haven't looked at, laid down, and had a total energy collapse. I spent the rest of the day laying in bed trying not to move.
I did have a slight temperature, but it never got out of the 99's except once when it was 100.1. The nurses tell me that sometimes this happen when your body begins to make blood cells again.
I'm counting on that being the case.
I decided yesterday to take this day to rest no matter how good I felt.
I feel like taking this day to rest :-D.
I hope this update isn't too boring. I try to put some storytelling energy into my blogs, but I just don't have any today. I'm not depressed, and I don't feel bad. I'm still at peace. I just have no energy.
Storytellers with no passion are not good storytellers. It's the cardinal sin of storytelling.
The Future
In case you're interested (am I sounding like Eeyore yet?), and in case I haven't already told you, here's what's going on.
This is the boring part, though I guess it's not so boring for the doctors that are monitoring the bacteria and the antibiotic in my blood. The doctors have kept my temperature under control for a week now, though, so I'm thinking they're doing an awesome job with this antibiotic.
Anyway, the boring part is just waiting around for my body to kick back on. That takes 10 to 14 days from "nadir," the low point of the chemotherapy. Nadir is usually designed to be at 14 days. Today is day 21 for me, so I've set my heart on having everything kick back on 3 days before what's normal because Dr. Strickland told me he's seen that happen before.
That would mean tomorrow's blood counts would be improved rather than down.
We'll see.
Either way, it's just a waiting game.
Once my blood counts get up enough, they'll release me. Specifically, they want to see my neutrophils at 500. Currently they're at 1.7% of 400, or about 6. (I think that's how it's calculated.)
So, we're not there yet.
After my neutrophils are 500, then I can go home. Two weeks later I come back in for a marrow biopsy to make sure things are still okay. Normally, they would then admit me to the hospital, but Dr. Reddy—my current attending physician; they rotate—tells me that they'll delay to let me go to a house church conference in Florida over Labor Day weekend.
I'll come back in the hospital for a couple weeks for a shorter round of chemo called a consolidation round, go home for a couple weeks, then do another consolidation round.
After that we head toward a bone marrow transplant.
Bone Marrow and Stem Cell Transplants
In a bone marrow transplant, the doctors actually harvest bone marrow from the pelvis of the donor, making numerous tiny holes with a needle to extract the marrow. The donor is under general anesthetic and wakes up feeling like they've been kicked in the butt by a mule.
No stitches, no incisions. Just needle holes—a lot of them.
The soreness goes away in a week.
In a stem cell transplant, the doctors give the donor growth hormone that causes a lot of bone marrow stem cell production, so much that the stem cells enter the blood, and can be harvested there.
Then, they hook the donor to a machine, which takes blood out of one arm, extracts the stem cells, and puts it back in the other arm.
That's a lot easier on the donor, but there's enough differences between the results of the two methods that the transplant team usually chooses one over the other for one or more reasons.
For the patient, there is a massive chemotherapy dose for days before the transplant, completely wiping out his bone marrow. Not everyone can handle that, so it's a lot more viable for young patients. Dr. Strickland says that at 50 years old, I'm on the line between usually no problem and usually a problem.
For older folks, they sometimes try a less aggressive chemotherapy, and then depend on the new immune system to destroy any leftover cancer cells after the transplant.
The biggest complication that recipients face is Graft vs. Host disease. That's sort of the opposite of, say, a kidney transplant recipient rejecting a kidney. In Graft vs. Host disease, the transplant--the new immune system--rejects the body it's put in and begins to attack it.
You can imagine that's bad.
Apparently, there are drugs that control it, and GVH, as it's called, can vary from a skin rash to a fatal destruction of many bodily organs.
Apparently, it's hard to predict no matter how well or not well you're matched with a donor.
I talked to a man yesterday who had a bone marrow or stem cell transplant 6 years ago. I'd just been reading about transplants the night before, and I'd read that the first 6 months to a year can be pretty miserable with all the sorts of problems that are also side effects of chemotherapy: mouth sores, gastrointestinal problems, and graft vs. host disease with rashes and other symptoms.
So I asked him if it was rough. He paused a moment, trying to decide if he was going to discourage me, and then he said, "It was extremely rough for a year and a half. Better after that."
He then told me not to get him wrong, it was tolerable, just extremely rough.
Well, now he's relapsed. His transplant was for myelofibrosis, which often leads into AML. The transplant took for a while, but now he's got AML.
Life's not easy, and not everything we try has good results.
As he left the break room, he said, "But, hey, it's 2011, it's 5:30 in the morning, and the sun is still shining on my head, and for that I'm grateful."
Gosh, I love people like that.
So, I have a tough row to hoe.
For all of you who are proving to love me, apparently more than I love myself, which is very difficult, I want to remind you that from my perspective, this isn't about me. There are 7 billion people in this world. In general, one less doesn't make much a difference unless you can make your life count for something. I don't want my tombstone to say, "He scored 20,000 on such and such video game."
I don't need to change the world. I just want to be like George Bailey of It's a Wonderful Life and do what's in front of me to do.
A little pain and a little risk to get and give a lot of love. It's a good tradeoff.
There's two things that give me hope of making a difference in people's lives.
- Never underestimate the power of a kind word. So often, it's the little things that matter.
- Jesus offers us the opportunity to live a life that's far more than our own. "I am crucified with Christ; nevertheless I live. Yet not I, but Christ lives in me, and the life I live in the flesh I live by faith in the Son of God who loved me and gave himself for me" (Gal. 2:20).
Same's true for all of us. Never underestimate yourself.
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. (Marianne Williamson, A Return to Love; accessed August 4, 2011)
This is why it's all good.
This is the way, and I'm looking forward to walking in it.
Back to the Mundane: Hair
My pillow case is covered in black hair now. My lips are cracking, probably from rinsing my mouth with salt water to take care of the sore on my tongue. The nurses gave me vaseline for my chapped lips, which works amazingly well ...
... both for healing my lips and for picking up hair off my pillow.
This morning, I washed my hair first, and then I had to rinse hair from my face and most of the rest of my body.
So, tired of chewing on hair, I'm buzzing it off today.
That's all the news I can think of!
Thursday, July 7, 2011
July 7: Getting You Up to Date
Okay, so the diagnosis is Blastic Plasmacytoid Dendritic Cell Neoplasm.
Yeah, I've been practicing on and off for 48 hours, and I still can't say it fast, even though I now know what all those words mean.
So, I'll give you the details, and in the next post I'll tell you about my experience with going home and googling Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).
BPDCN is a very rare and aggressive lymphoma (I think that's what I'm reading) which usually will turn into a particularly aggressive form of Acute Myeloid Leukemia (AML). There's probably been less than 500 diagnosed cases, though I can't find any certain number.
The outlook for BPDCN was particularly grim until the last five years or so, with pretty much everyone dying within the first two years and a median survival time of 13 months. (Whoo whee! Wow!) BUT ...
The problem was that they were treating it like other leukemias. If you obtain remission with chemotherapy with other leukemias, you wait and see if the remission will last. If it doesn't, then you do chemo again, obtain a second remission, then do a bone marrow or stem cell transplant.
Not with BPDCN. With BPDCN, the first remission never lasts—in fact, it never lasts longer than 3 months—and you don't get a second remission. The patient dies, and he/she dies pretty quickly.
So now they know that with BPDCN you obtain remission with chemo (an intensive chemo designed for AML), the chances of which they refer to as "excellent," and then you do the bone marrow transplant.
Then ...
Then they don't know. It's been too recent, and there's been too few cases, so they really don't know what happens after that.
I know of several cases that are currently in remission after bone marrow or stem cell transplant. One's at 18 months (currently) and one was at 26 months when the medical report was written (I think in January). Both patients were doing fine, still in remission.
One older patient (over 67) made it 57 months (almost 5 years), and it doesn't appear from the medical paper that the person died of the BPDCN, but it's hard to tell from the abstract that I am able to read on Pubmed.
So, technically speaking, that's my situation. I have a pretty good shot with chemo and bone marrow (or stem cell) transplant, assuming we can find a donor, and then I become part of the medical testing to see how long BPDCN patients last.
Okay, now some practical info...
Concerning being a bone marrow donor:
I'll post more info on how to offer to be a donor as I have it. The doctor says I should type my brothers and sister first. My children are not much better hope than the average citizen.
Giving bone marrow doesn't mean giving all the marrow in your body. They pull a little bit from your hip, just like they did the bone marrow biopsy on me, and then they inject it right into my bloodstream (after they've made sure to destroy all my bone marrow through chemo). The bone marrow, having stem cells in it, then proliferates on its own, replacing bone marrow, blood, and everything.
Really, it's a pretty amazing process.
If you want to find out more about offering to be a bone marrow donor before I do, try marrow.org. I will, too, but it will be a couple days before I post anything.
I've had a lot of offers from people to have their bone marrow checked for a match. It's really wonderful of everyone to be so kind. I am happy to report that giving bone marrow's not that bad. It's very weird, having a needle poking around inside your hip bone. I've never felt anything like it, but it wasn't bad, and I was only barely sore the next day, though another donor once said she felt like she'd been kicked by a mule afterward.
Concerning certainty of diagnosis:
The pathology lab in California settled on Blasti Plasmacytoid Dendritic Cell Neoplasm as an official diagnosis, but the doctors at Vanderbilt want to verify it. They are looking at my cells under a microscope from both the bone marrow biopsy and my blood. They have not given the BPDCN their blessing yet, though I think it's likely they will. It's also likely that even if they don't, I still have something rare. I just didn't match any of the more common stuff.
Also, I've seen pictures of bumps exactly like the bumps on my back on the internet from other BPDCN patients. Further, to have lesions (the bumps) as your first symptom, followed rapidly by leukemia symptoms, is the norm for BPDCN. On the other hand, they make the diagnosis on exact chromosome abnormalities on particular blood cells (in this case plasmacytoid dendritic cells, which help identify pathogens in the blood), so that's what they're verifying.
Okay, now I'm going to go write another post about the harrowing experience I had the day I was told I have Blastic Plasmacytoid Dendritic Cell Neoplasm.
Yeah, I've been practicing on and off for 48 hours, and I still can't say it fast, even though I now know what all those words mean.
So, I'll give you the details, and in the next post I'll tell you about my experience with going home and googling Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).
BPDCN is a very rare and aggressive lymphoma (I think that's what I'm reading) which usually will turn into a particularly aggressive form of Acute Myeloid Leukemia (AML). There's probably been less than 500 diagnosed cases, though I can't find any certain number.
The outlook for BPDCN was particularly grim until the last five years or so, with pretty much everyone dying within the first two years and a median survival time of 13 months. (Whoo whee! Wow!) BUT ...
The problem was that they were treating it like other leukemias. If you obtain remission with chemotherapy with other leukemias, you wait and see if the remission will last. If it doesn't, then you do chemo again, obtain a second remission, then do a bone marrow or stem cell transplant.
Not with BPDCN. With BPDCN, the first remission never lasts—in fact, it never lasts longer than 3 months—and you don't get a second remission. The patient dies, and he/she dies pretty quickly.
So now they know that with BPDCN you obtain remission with chemo (an intensive chemo designed for AML), the chances of which they refer to as "excellent," and then you do the bone marrow transplant.
Then ...
Then they don't know. It's been too recent, and there's been too few cases, so they really don't know what happens after that.
I know of several cases that are currently in remission after bone marrow or stem cell transplant. One's at 18 months (currently) and one was at 26 months when the medical report was written (I think in January). Both patients were doing fine, still in remission.
One older patient (over 67) made it 57 months (almost 5 years), and it doesn't appear from the medical paper that the person died of the BPDCN, but it's hard to tell from the abstract that I am able to read on Pubmed.
So, technically speaking, that's my situation. I have a pretty good shot with chemo and bone marrow (or stem cell) transplant, assuming we can find a donor, and then I become part of the medical testing to see how long BPDCN patients last.
Okay, now some practical info...
Concerning being a bone marrow donor:
I'll post more info on how to offer to be a donor as I have it. The doctor says I should type my brothers and sister first. My children are not much better hope than the average citizen.
Giving bone marrow doesn't mean giving all the marrow in your body. They pull a little bit from your hip, just like they did the bone marrow biopsy on me, and then they inject it right into my bloodstream (after they've made sure to destroy all my bone marrow through chemo). The bone marrow, having stem cells in it, then proliferates on its own, replacing bone marrow, blood, and everything.
Really, it's a pretty amazing process.
If you want to find out more about offering to be a bone marrow donor before I do, try marrow.org. I will, too, but it will be a couple days before I post anything.
I've had a lot of offers from people to have their bone marrow checked for a match. It's really wonderful of everyone to be so kind. I am happy to report that giving bone marrow's not that bad. It's very weird, having a needle poking around inside your hip bone. I've never felt anything like it, but it wasn't bad, and I was only barely sore the next day, though another donor once said she felt like she'd been kicked by a mule afterward.
Concerning certainty of diagnosis:
The pathology lab in California settled on Blasti Plasmacytoid Dendritic Cell Neoplasm as an official diagnosis, but the doctors at Vanderbilt want to verify it. They are looking at my cells under a microscope from both the bone marrow biopsy and my blood. They have not given the BPDCN their blessing yet, though I think it's likely they will. It's also likely that even if they don't, I still have something rare. I just didn't match any of the more common stuff.
Also, I've seen pictures of bumps exactly like the bumps on my back on the internet from other BPDCN patients. Further, to have lesions (the bumps) as your first symptom, followed rapidly by leukemia symptoms, is the norm for BPDCN. On the other hand, they make the diagnosis on exact chromosome abnormalities on particular blood cells (in this case plasmacytoid dendritic cells, which help identify pathogens in the blood), so that's what they're verifying.
Okay, now I'm going to go write another post about the harrowing experience I had the day I was told I have Blastic Plasmacytoid Dendritic Cell Neoplasm.
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