Good Afternoon all:
I was originally hoping to write a post proclaiming that the new protocol started yesterday but, man, it was busy. From about 9:00 to the time we left, 6:15, there was a never ending stream of people poking, prodding, giving me this medicine, hanging that bag of fluid (or medicine).In the end I had very little time to do anything (except sleep off what I think might have been 3 doses of Benadryl).
So, the medicine from the clinical trial has been infused. I now have super human strength, the ability to lift comically heavy things like freight trains, and can scatter molecules (yours or mine) to the four winds.
Oh, that might have been the dream I had last night. As I report on the progress of this new trial I will try to maintain an even mix of both reality and optimism.
Clearly, the first day after receiving my first weekly dose cannot yield much but I can report the following:
1. The side effect that the consent form showed as effecting 100% of patients did not waste any time finding its way to me. (Don't ask, you'd rather not know)
2. My white blood cell counts today rose pretty dramatically and were higher since March by my Dad's reckoning. Still no neutrophils, but the number of white blood cells is a promising sign.
3. Are my fevers under control,or closer to it? I went to bed last night with a borderline fever but not hot enough for Tylenol. I checked throughout the night and my temperature dropped instead of continuing its inevitable march upward.
I've entered this trial envisioning it like a baseball game where someone has handed me a new bat, far improved from the one I retained from High School. With a wink and a nod they've told me to "give this one a try". It feels nice in my hands and I get a satisfying whoosh when I swing it. I was never much of a homerun hitter growing up. Perhaps that changes now.
As always, thanks for reading.
--Russ.
Tuesday, July 27, 2010
Tuesday, July 20, 2010
Try as I might
Good Afternoon All:
This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.
My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.
The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.
This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.
I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?
I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.
This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.
So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.
So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.
As always, thanks for reading.
--Russ.
This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.
My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.
The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.
This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.
I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?
I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.
This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.
So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.
So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.
As always, thanks for reading.
--Russ.
Monday, July 12, 2010
Update
Good Morning all:
I'm typing this post from Hopkins but as an outpatient. As it turns out the decision was made late on Friday to go ahead and release me from the hospital and move me to outpatient care.
I had a bone marrow biopsy Friday that showed a continued presence of leukemia in my marrow, and having ruled out all other infection sources, the doctors were content to pin the fevers on the disease. So, I had to deal with the bad news that the chemo didn't continue to kick the disease out of my body after the preliminary biopsy showed cancer in the marrow. At the same time I had to stifle my enthusiasm for returning home.
The biopsy is truly bad news. Each failed treatment becomes problematic. The doctors are looking at next options and based on some test results that might not be available until next week a decision along these lines will remain on hold. In the meantime I have challenged the Oncology team to do what, in my opinion, they have neglected to do since I relapsed--buy my body some time to recover its counts. It seems that the cancer is recovering faster than the real me, and ultimately crowds out any opportunity for new, healthy marrow to develop. I intend to be dogged on this point. I think I have hit my mark so far as I got a glimmer of recognition when I mentioned this point to my Outpatient Nurse Practitioner this morning.
On the positive end I am home. I've lost weight, a fair amount of muscle I might guess, but I feel good. Over the weekend I successfully assembled Audrey's new bicycle (Mommy and Daddy's gift for her 6th birthday), watched the kids enjoy bikes and skateboards with the neighborhood kids all while coolly sitting under the shade of a tree with Bella sitting calmly at my side. We even joined some neighbors for dinner last night. And best of all I got to tuck my kids into bed each night and spend some quiet moments with Marla.
Of course, none of this is possible as an inpatient and so I feel glad to have this opportunity even if it comes as a result of some distressing news. As I know more about the next treatment I will update here. Also if inspiration strikes on a more philosophical post you can expect to find it here.
As always, thanks for reading.
--Russ.
I'm typing this post from Hopkins but as an outpatient. As it turns out the decision was made late on Friday to go ahead and release me from the hospital and move me to outpatient care.
I had a bone marrow biopsy Friday that showed a continued presence of leukemia in my marrow, and having ruled out all other infection sources, the doctors were content to pin the fevers on the disease. So, I had to deal with the bad news that the chemo didn't continue to kick the disease out of my body after the preliminary biopsy showed cancer in the marrow. At the same time I had to stifle my enthusiasm for returning home.
The biopsy is truly bad news. Each failed treatment becomes problematic. The doctors are looking at next options and based on some test results that might not be available until next week a decision along these lines will remain on hold. In the meantime I have challenged the Oncology team to do what, in my opinion, they have neglected to do since I relapsed--buy my body some time to recover its counts. It seems that the cancer is recovering faster than the real me, and ultimately crowds out any opportunity for new, healthy marrow to develop. I intend to be dogged on this point. I think I have hit my mark so far as I got a glimmer of recognition when I mentioned this point to my Outpatient Nurse Practitioner this morning.
On the positive end I am home. I've lost weight, a fair amount of muscle I might guess, but I feel good. Over the weekend I successfully assembled Audrey's new bicycle (Mommy and Daddy's gift for her 6th birthday), watched the kids enjoy bikes and skateboards with the neighborhood kids all while coolly sitting under the shade of a tree with Bella sitting calmly at my side. We even joined some neighbors for dinner last night. And best of all I got to tuck my kids into bed each night and spend some quiet moments with Marla.
Of course, none of this is possible as an inpatient and so I feel glad to have this opportunity even if it comes as a result of some distressing news. As I know more about the next treatment I will update here. Also if inspiration strikes on a more philosophical post you can expect to find it here.
As always, thanks for reading.
--Russ.
Monday, July 5, 2010
An update and a silver lining
Good Morning All:
Yesterday morning I was 'set off' by the routine 7:30 visit from the Intern preceding rounds. She greeted me by saying, "Well we're going to try and find out what is causing these fevers today." Immediately two questions flashed in my mind. Sarcastically, and actually never stated was: . . . and so what have you been doing over the past week?
The question I did ask was, "Oh? What are we going to do different today?" Her response astounded me. She replied "Nothing. We'll just monitor you." After a brief discussion where I confirmed that I understood the medical concerns with letting me out of the hospital with a pattern of daily fevers, I added ". . . but there is a definition of insanity." She stumbled through the reference but she actually said it back to me (insanity is doing the same thing over and over and expecting different results). At this point she looked like she really would rather be somewhere else. Since my point clearly had been made I let her go.
She is part of the team that visits about an hour later on rounds. Before the rounding team enters my room they talk about my case outside my room--this is where the seed I planted takes root. When they came in we talked about my fevers, etc. and the Attending Physician, lo and behold, did have a change to make to my medications. He swapped out one medication that can cause fevers with another that does not.
While it is premature to proclaim anything. I've now been fever-free for 24 hours. At times it feels like one has to be a trial lawyer to encourage the doctors to move from a comfort zone. But perhaps I'm cynical, perhaps the Attending Physician had this in mind all along and did not share it with the intern.
Silver Lining Alert:
This last round of chemo (the one I had a little over a month ago) was billed as one that would be difficult on the digestive tract. Without the sordid details, it has performed as sold. I started the regimen on a liquid diet. And digestive 'issues' have made my willingness or the effectiveness of eating somewhat spotty. As a result I have dropped about 30 pounds and have hovered around the weight-loss mark I had set for myself over 15 years ago! For as bad as I can feel with the fevers, I feel great! Of course, I haven't lost all the stuff you'd want to lose. I'm probably a little on the dehydrated side and I'm certain that as I lounge around in the hospital I'm losing muscle mass as well. But I don't think that accounts for all 30 pounds. A harsh way to go about losing weight, but effective.
As always, thanks for reading.
--Russ.
Yesterday morning I was 'set off' by the routine 7:30 visit from the Intern preceding rounds. She greeted me by saying, "Well we're going to try and find out what is causing these fevers today." Immediately two questions flashed in my mind. Sarcastically, and actually never stated was: . . . and so what have you been doing over the past week?
The question I did ask was, "Oh? What are we going to do different today?" Her response astounded me. She replied "Nothing. We'll just monitor you." After a brief discussion where I confirmed that I understood the medical concerns with letting me out of the hospital with a pattern of daily fevers, I added ". . . but there is a definition of insanity." She stumbled through the reference but she actually said it back to me (insanity is doing the same thing over and over and expecting different results). At this point she looked like she really would rather be somewhere else. Since my point clearly had been made I let her go.
She is part of the team that visits about an hour later on rounds. Before the rounding team enters my room they talk about my case outside my room--this is where the seed I planted takes root. When they came in we talked about my fevers, etc. and the Attending Physician, lo and behold, did have a change to make to my medications. He swapped out one medication that can cause fevers with another that does not.
While it is premature to proclaim anything. I've now been fever-free for 24 hours. At times it feels like one has to be a trial lawyer to encourage the doctors to move from a comfort zone. But perhaps I'm cynical, perhaps the Attending Physician had this in mind all along and did not share it with the intern.
Silver Lining Alert:
This last round of chemo (the one I had a little over a month ago) was billed as one that would be difficult on the digestive tract. Without the sordid details, it has performed as sold. I started the regimen on a liquid diet. And digestive 'issues' have made my willingness or the effectiveness of eating somewhat spotty. As a result I have dropped about 30 pounds and have hovered around the weight-loss mark I had set for myself over 15 years ago! For as bad as I can feel with the fevers, I feel great! Of course, I haven't lost all the stuff you'd want to lose. I'm probably a little on the dehydrated side and I'm certain that as I lounge around in the hospital I'm losing muscle mass as well. But I don't think that accounts for all 30 pounds. A harsh way to go about losing weight, but effective.
As always, thanks for reading.
--Russ.
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