So it was an interesting weekend.
Friday night I slept fitfully. Meaning I work up at 4AM, wide awake, unable to get back to sleep. At around 6AM I finally nodded back to sleep, and then woke up at 8AM.
With a lot of blood on my chest.
Seems the line had jiggled around a bit. Now, I've been trained by Bonnie and others to fly into a panic and all I could think of was how much grief they were all going to give me for keeping this stupid line in, however I resisted the urge to panic and calmly told Jill that we probably needed to go to the ER, unless one of our doctor friends could come by and take a look. Fortunately, a surgeon lives about ten houses down the street (truth in advertising: we live in Los Angeles and yes, she is a plastic surgeon and she normally works on something chest-related other than central veinous catheters). This woman was kind enough to take a look, and she told me that the skin was just getting very tired of having the line in there, and a granulated piece of skin probably broke off and let the line jiggle around a bit. She helped me change the dressing, and we cleaned up the blood from the CVL as best we could to cover up the evidence. Hopefully nobody in Arkansas will be the wiser.
Saturday night, I was determined to sleep better. I took an Ambien. I slept very soundly for about three hours. Then I woke up at 4AM, like the walking dead, again unable to sleep. It's becoming a pattern, and as I type this it is 3AM on Monday morning so there's no sign of abatement. Taking the Ambien, though, combined with the inability to sleep, is a real doozy.
The tingling in my feet is still there but it has lessened a little bit. It is most likely the onset of peripheral neuropathy, but I'm not 100% sure because (I'll get to this in a moment) my ankles are so swollen it's hard to even comprehend it, and some of this feeling has to be from the funky cold edema*.
In addition to the tingling, I'm swollen up (despite having been on a reduced dose of Dex, and not having taken it since last Thursday). I still have the rash on my neck from the Dex I took a month ago. Plus I now also have the Thalidomide rash on my face, like last time (BB said "why do people complain about a little rash, it means cancer is dying" so I suppose I will take this rash...except I stopped taking the Thalidomide last Thursday as well after the neuropathy started showing up). Because of the swelling or something else, I also have blurry vision and trouble getting around (I can't bend my ankles, literally).
I will be calling one of the nurses (Melissa, she of the nudist truck driver father story) to give her the rundown on my maladies and see what they suggest. A fellow MM traveller from Australia was kind enough to email me about Alpha Lipoic Acid as a preventative for neuropathy, and I'm definitely going to inquire about this (I'm still using that MetaNx vitamin B compound but one can't have enough preventative medicine where neuropathy is concerned).
Hope you are all sleeping better than I am!
*play on a bad pop song from the 80s, the" funky cold medina." Feel old and pathetic now? Me too.
Monday, June 22, 2009
Friday, June 19, 2009
Some labs...holding steady, basically
I'm working from two sets of lab numbers, both old. The first set was from last Friday (the 12th) and the second set from this past Tuesday (the 16th).
From the pull on the 12th, my IgG was at 623, with an M-spike of 0.27. That's down, and that's not bad...although it ain't 0.0 yet, dammit!!
From the pull on the 16th, my IgG was at 580, with an M-spike of 0.29.
So what I take from this is there is a rounding error going on, and I currently have an M-spike of 0.3.
Other numbers are good to very good. My white count is 9.6, which could be a little high in response to the last of that dreadful cough (which is now gone). Platelets have recovered to 175, which is normal. Albumin is 4.0 now, which is good. Liver numbers, even, are settling down, which is good. All my electrolytes are good.
The only things still out of whack, really, are my red counts. Hemoglobin is only 9.9. That will come up eventually, or I'm sure there are injections to spur red blood cell growth but we won't worry about that right now. We have another three weeks or so of recovery before I subject my marrow to the final round of chemo so we'll watch and see how the counts recover in the meantime.
Meanwhile, we'll watch that damn M-spike. If I can get it under 0.2 before I get back, then I feel like it is on the path to complete remission still. I just don't want to see a plateau.
I'm going to meet with Dr. SH before I return to Arkansas. He is much less aggressive than BB, and will probably tell me all the testing is massive overkill, the remaining treatment is overkill, we should watch and wait, etc. I'm not going to change my mind about BB's protocol whatsoever, but this might give me the psychological ammunition to refuse another fine needle aspiration of a tumor that everybody else thinks will go away and in any case we shouldn't look at it for 45 days, etc. etc. We'll see. It will be interesting to check in wtih SH after all I've been through so far.
I'm worried about some lingering tickling in my feet. If this is the onset of neuropathy, I'm gonna be bummed. It's gone on more or less unabated for a day but I think it could also just be swelling from the Dex, so I'm not going of the thalidomide just yet. I want to get the anti-cancer effects of that drug to keep working.
We should know a bit more, hopefully, on Tuesday when if I'm lucky we'll get the data from today's blood-draw back. Even this past Tuesday will only have reflected one day of the Thalidomide / Dex I was on, so hopefully that worked to suppress the cancer a bit more. Meanwhile, everything is on a positive trend -- I just want to see that M-spike completely gone.
Still, 0.27 g/DL is a lot better than 6.2 which is where I was before treatment back in February!!!
More news as it becomes available. Have a good weekend, folks!
From the pull on the 12th, my IgG was at 623, with an M-spike of 0.27. That's down, and that's not bad...although it ain't 0.0 yet, dammit!!
From the pull on the 16th, my IgG was at 580, with an M-spike of 0.29.
So what I take from this is there is a rounding error going on, and I currently have an M-spike of 0.3.
Other numbers are good to very good. My white count is 9.6, which could be a little high in response to the last of that dreadful cough (which is now gone). Platelets have recovered to 175, which is normal. Albumin is 4.0 now, which is good. Liver numbers, even, are settling down, which is good. All my electrolytes are good.
The only things still out of whack, really, are my red counts. Hemoglobin is only 9.9. That will come up eventually, or I'm sure there are injections to spur red blood cell growth but we won't worry about that right now. We have another three weeks or so of recovery before I subject my marrow to the final round of chemo so we'll watch and see how the counts recover in the meantime.
Meanwhile, we'll watch that damn M-spike. If I can get it under 0.2 before I get back, then I feel like it is on the path to complete remission still. I just don't want to see a plateau.
I'm going to meet with Dr. SH before I return to Arkansas. He is much less aggressive than BB, and will probably tell me all the testing is massive overkill, the remaining treatment is overkill, we should watch and wait, etc. I'm not going to change my mind about BB's protocol whatsoever, but this might give me the psychological ammunition to refuse another fine needle aspiration of a tumor that everybody else thinks will go away and in any case we shouldn't look at it for 45 days, etc. etc. We'll see. It will be interesting to check in wtih SH after all I've been through so far.
I'm worried about some lingering tickling in my feet. If this is the onset of neuropathy, I'm gonna be bummed. It's gone on more or less unabated for a day but I think it could also just be swelling from the Dex, so I'm not going of the thalidomide just yet. I want to get the anti-cancer effects of that drug to keep working.
We should know a bit more, hopefully, on Tuesday when if I'm lucky we'll get the data from today's blood-draw back. Even this past Tuesday will only have reflected one day of the Thalidomide / Dex I was on, so hopefully that worked to suppress the cancer a bit more. Meanwhile, everything is on a positive trend -- I just want to see that M-spike completely gone.
Still, 0.27 g/DL is a lot better than 6.2 which is where I was before treatment back in February!!!
More news as it becomes available. Have a good weekend, folks!
Thursday, June 18, 2009
Slow news week, folks...
Boy they take a long time with labs here. I still don't have all my results from LAST FRIDAY. I should get them tomorrow, along with (I hope) results from this last Tuesday's draw.
The only data I have is that IgG is 625. Except when Arkansas called me to do my "anything wrong with you we should know about" follow up call, they told me that they got labs back and it showed IgG at 680. Both numbers are good, but I don't understand the discrepancy so hopefully I will get that ironed out. It could be they ran the blood that was drawn and sent to them in test tubes, but they claimed they got it from SH's office in LA. Who knows?
I am on the fourth and final day of my dex, which is a good thing -- legs swelling up, eyes puffy and unable to focus, etc. Horrible stuff, this. But it should help continue to kill off the cancer, along with the thalidomide I am taking (and which I am supposed to continue daily for the next three weeks).
Will post more when I get labs, hopefully tomorrow.
Thanks to all who have contacted me recently for various reasons, whether welcoming me home, setting up a time to get together, or letting me know that my blog has been helpful in treatment decisions (I've heard from St. Louis, Australia, and Europe in the last several days)! This really keeps me going and I'm very thankful for any ability to help any of you along the way. Keep strong and let's beat this damn thing, all of us!!!
The only data I have is that IgG is 625. Except when Arkansas called me to do my "anything wrong with you we should know about" follow up call, they told me that they got labs back and it showed IgG at 680. Both numbers are good, but I don't understand the discrepancy so hopefully I will get that ironed out. It could be they ran the blood that was drawn and sent to them in test tubes, but they claimed they got it from SH's office in LA. Who knows?
I am on the fourth and final day of my dex, which is a good thing -- legs swelling up, eyes puffy and unable to focus, etc. Horrible stuff, this. But it should help continue to kill off the cancer, along with the thalidomide I am taking (and which I am supposed to continue daily for the next three weeks).
Will post more when I get labs, hopefully tomorrow.
Thanks to all who have contacted me recently for various reasons, whether welcoming me home, setting up a time to get together, or letting me know that my blog has been helpful in treatment decisions (I've heard from St. Louis, Australia, and Europe in the last several days)! This really keeps me going and I'm very thankful for any ability to help any of you along the way. Keep strong and let's beat this damn thing, all of us!!!
Friday, June 12, 2009
A simple blood draw reminds me of my most embarrassing moment...
And this one is a doozy. Some of you know this, but others probably don't. I'd forgotten all about it until today, when I went to Dr. SH's office in LA to get a blood draw as part of my ongoing therapy while back in LA. I saw one of the technicians and it reminded me of the tests right before my diagnosis...and the HORRIBLE I-want-to-crawl-out-of-my-skin-and-run-away embarrassment I experienced.
And it was all my own fault.
Flash back to my pre-diagnosis days. I knew I had either MGUS or Myeloma, but thought it was probably the former as I exhibited no symptoms in my blood except the M-spike (i.e. my Beta 2 Microglobulin was normal, I wasn't really anemic, my Albumin was normal, I had no issues with Calcium, etc.).
But I had to get a bone marrow biopsy, and I was nervous. Speaking of which, I wonder why that one left no lasting mark, and yet I *STILL* have bruises from every single one they've done in Arkansas?
I had lunch with Jill before we went into the doctor's. I was pretty jumpy, as I wasn't looking forward to the visit. I had a couple of glasses of wine with lunch to relax a bit. Then we headed in.
Before I got the bone marrow, I had to get X-rays. Now bear in mind, I'm nervous, and have a couple of glasses of wine in me. I go into the X-ray room, and they take what seems like 500 X-rays (but was probably more like 30). I'm bantering a bit with the two female technicians to pass the time. Eventually, they have to X-ray my skull, so they stand me up against the wall and arrange the giant X-ray gun next to my head. They stand back about 50 feet and hit the zapper.
This is when I decided it was a good time for shtick. After all, they'd just zapped my brain.
I could go one of two ways...I could either flip my index finger against my lips and do the "abbidy-abbidy-abbidy" thing. Or I could cross my eyes and say "does everything look okay?" I decide for the latter, because the former would be over the top. Subtlety is my strong point, you see.
So the woman comes over, and I look directly at her and say "does everything look okay?" and she says "yes." I paused a moment, puzzled. I must not have been obvious enough with my crossed eyes. I summon up every effort to cross my eyes as goofy as possible and I stare directly at her from about a foot away and say "hey, you're not getting my zany cross-eyed shtick!!!"
It was at this point that I realized the woman herself was cockeyed. Not like a lazy eye but full-blown crossed eyes.
I was aghast. Fortunately, she was cool about it. But I was stuck in there another 15 minutes, trying not to laugh at how horrible the situation was (and failing). Can you imagine?
What price shtick??
And it was all my own fault.
Flash back to my pre-diagnosis days. I knew I had either MGUS or Myeloma, but thought it was probably the former as I exhibited no symptoms in my blood except the M-spike (i.e. my Beta 2 Microglobulin was normal, I wasn't really anemic, my Albumin was normal, I had no issues with Calcium, etc.).
But I had to get a bone marrow biopsy, and I was nervous. Speaking of which, I wonder why that one left no lasting mark, and yet I *STILL* have bruises from every single one they've done in Arkansas?
I had lunch with Jill before we went into the doctor's. I was pretty jumpy, as I wasn't looking forward to the visit. I had a couple of glasses of wine with lunch to relax a bit. Then we headed in.
Before I got the bone marrow, I had to get X-rays. Now bear in mind, I'm nervous, and have a couple of glasses of wine in me. I go into the X-ray room, and they take what seems like 500 X-rays (but was probably more like 30). I'm bantering a bit with the two female technicians to pass the time. Eventually, they have to X-ray my skull, so they stand me up against the wall and arrange the giant X-ray gun next to my head. They stand back about 50 feet and hit the zapper.
This is when I decided it was a good time for shtick. After all, they'd just zapped my brain.
I could go one of two ways...I could either flip my index finger against my lips and do the "abbidy-abbidy-abbidy" thing. Or I could cross my eyes and say "does everything look okay?" I decide for the latter, because the former would be over the top. Subtlety is my strong point, you see.
So the woman comes over, and I look directly at her and say "does everything look okay?" and she says "yes." I paused a moment, puzzled. I must not have been obvious enough with my crossed eyes. I summon up every effort to cross my eyes as goofy as possible and I stare directly at her from about a foot away and say "hey, you're not getting my zany cross-eyed shtick!!!"
It was at this point that I realized the woman herself was cockeyed. Not like a lazy eye but full-blown crossed eyes.
I was aghast. Fortunately, she was cool about it. But I was stuck in there another 15 minutes, trying not to laugh at how horrible the situation was (and failing). Can you imagine?
What price shtick??
Thursday, June 11, 2009
Attention Junior Sigmund Freud club...
As Frank would say, I had a "real swinger of a dream" last night. That's a line of dialogue from the utterly brilliant Manchurian Candidate. It's also, I think, the only line in there that dates it. But Francis Allen Sinatra delivers it with such earnestness that it still works.
I've had a lot of trouble with this dry cough. Seems when the white blood cells come up after being next to nothing, they kick into high gear to clean up anything that might be going on in the body. The cough always comes on in the evening, as I'm lying down. I've been taking a cough suppressant / expectorant and it is working fine, but last night I kept waking up from coughing.
In between waking up, I had a very odd dream that is -- I *think* -- related to Myeloma.
There was a 20/20 style expose being done on Dr. JB, the guy who is opposed to any transplants. I had been speaking with a person at the MMRF (Multiple Myeloma Research Foundation) as part of a focus group they are doing, so I had spoken about this doctor (and many others) and that may be why he was fresh in my mind. I guess subconsciously I must think his approach is wrong.
Anyhow, he lived in a very nice house out in the countryside. This was all seen first-person from the point-of-view of the 20/20 guy. They went to his door. He came out, stooped over at a 90 degree angle to the ground, with a wide-brimmed hat. It didn't really look like the actual doctor, but I knew it was him.
The 20/20 guy kept hammering him with questions, and JB would either mumble completely inaudibly in response, or just pretend not to hear, all the while shuffling towards the gate at the front of his large woodsy front yard where the street was. The 20/20 guy was right at his side, following along.
When they got to the gate, JB suddenly stood up straight and screamed "GET HIM, BUBBA!!!!" whereupon two dogs came out of nowhere and started tearing the 20/20 guy to shreds. One dog looked something like a cross between an Irish setter and a werewolf, while the other dog was either a Scottish terrier or a schnauzer. BB is German so I'll assume the latter.
Cut to: I am working on a computer, having heard of the tragic demise of the 20/20 reporter. There is a website dedicated to his work, and he has a link entitled "here is the article I was going to print -- if you're reading this it's because I'm dead." So I clicked on it.
Turned out the expose on JB was that he owed some restaurant supply company $29.60. I was just about to read more when I coughed myself awake.
So...anybody care to interpret that?
I've had a lot of trouble with this dry cough. Seems when the white blood cells come up after being next to nothing, they kick into high gear to clean up anything that might be going on in the body. The cough always comes on in the evening, as I'm lying down. I've been taking a cough suppressant / expectorant and it is working fine, but last night I kept waking up from coughing.
In between waking up, I had a very odd dream that is -- I *think* -- related to Myeloma.
There was a 20/20 style expose being done on Dr. JB, the guy who is opposed to any transplants. I had been speaking with a person at the MMRF (Multiple Myeloma Research Foundation) as part of a focus group they are doing, so I had spoken about this doctor (and many others) and that may be why he was fresh in my mind. I guess subconsciously I must think his approach is wrong.
Anyhow, he lived in a very nice house out in the countryside. This was all seen first-person from the point-of-view of the 20/20 guy. They went to his door. He came out, stooped over at a 90 degree angle to the ground, with a wide-brimmed hat. It didn't really look like the actual doctor, but I knew it was him.
The 20/20 guy kept hammering him with questions, and JB would either mumble completely inaudibly in response, or just pretend not to hear, all the while shuffling towards the gate at the front of his large woodsy front yard where the street was. The 20/20 guy was right at his side, following along.
When they got to the gate, JB suddenly stood up straight and screamed "GET HIM, BUBBA!!!!" whereupon two dogs came out of nowhere and started tearing the 20/20 guy to shreds. One dog looked something like a cross between an Irish setter and a werewolf, while the other dog was either a Scottish terrier or a schnauzer. BB is German so I'll assume the latter.
Cut to: I am working on a computer, having heard of the tragic demise of the 20/20 reporter. There is a website dedicated to his work, and he has a link entitled "here is the article I was going to print -- if you're reading this it's because I'm dead." So I clicked on it.
Turned out the expose on JB was that he owed some restaurant supply company $29.60. I was just about to read more when I coughed myself awake.
So...anybody care to interpret that?
Tuesday, June 9, 2009
Another FNA? Effin' A!!
Howdy folks.
So, first of all, thanks especially to the people that urged me to buck up in response to my last post, which had a bit of woe-is-me in it. I appreciate you reminding me to stay positive and focused.
BB came in. I asked him if I was on track for remission, and he said he was "puzzled" by the "persistence of your M-protein." He also noted that "some people in low risk disease never achieve remission." I had to remind myself, I still have the tail of this transplant, plus consolidation therapy (dose-reduced VTD-PACE), plus three years of velcade, revlimid and dex. I'll get there. I'd just rather get there sooner than later. The sooner I get there, the more of this other therapy is used to keep making my body inhospitable for Myeloma, versus trying to get rid of what's already there.
He thought all my labs looked good, although now he's no longer joking about the liver numbers. They're still only mildly elevated but he wants to run liver panels twice a week to check on them. They did NOT come down last time, so I don't anticipate they will be to quick to go down this time, although I'm going to have a little more time off than planned. BB doesn't want me to start consolidation until the week of July 13, in order to give my marrow time to recover. That's fine with me...more time for the M-spike to fall. I'll be on bridging therapy (50% dose-reduced thal and dex) in the meanwhile, so that, also, should cause it to decrease.
When I return, he has ordered another Fine Needle Aspiration of the lesion in my right hip, which is the largest at 3.2cm as of 5/20 (my last PET). It was pushing 8cm at the start of treatment, so it is smaller. But he wants to know what is going on it there. Hopefully it will be gone by the next PET and he won't need the FNA...because readers of the blog will perhaps recall my last experience with the snake-handling religious maniac that does those.
I advised the nurses how it was going to go down this time...that I was going to have an anesthesiologist in the room administering the proper drugs, not a bunch of buffoons standing around saying "yer not gonna remember any of this hahaha!!" while I'm telling them I'm lucid and going to remember every second, which of course I do to this day.
Anyhow.
After five days of nurses looking at that Dex rash on my neck and saying "it'll go away" the nurse in BB's clinic instantly said "gawd what the hell is that on your neck?" and immediately prescribed some creme. It would have been nice to have had this a week ago. Conveniently, the creme came in a drum the size of a canteloupe so I'm not going to be able to bring it on the plane with me.
While back in LA, I'll go to the lab twice a week to have blood drawn, and they gave me the little kits this time so that two extra tubes will be drawn, clotted, spun in a centrifuge and given back to me to overnight to Arkansas for additional tests. They also gave me a pee jug they want me to mail in.
With this in mind, the quote of the day goes to Mike, one of the nurses in the clinic. "If you're like most people, you won't want to carry a jug full of urine on a plane."
Yes, Mike, I am like most people.
I forgot to mention, yesterday I went to lunch at Chick Fil-A, which I had remembered fondly from my youth. They are a chain perhaps most notable for the owner's decision, for reasons of his faith, not to be open on Sundays. I should say that in California, this is notable. In Arkansas, it is hardly unique. In fact on Sunday if you are driving around looking for lunch, your only options are Shlomo's Deli and Habib's Falafel. [crickets] Is this thing on??? Anyhow...sorry to report that Chick Fil-A was not as good as I remembered.
Okay folks. Be well. My next entry will be from home, probably after I get updated labs.
So, first of all, thanks especially to the people that urged me to buck up in response to my last post, which had a bit of woe-is-me in it. I appreciate you reminding me to stay positive and focused.
BB came in. I asked him if I was on track for remission, and he said he was "puzzled" by the "persistence of your M-protein." He also noted that "some people in low risk disease never achieve remission." I had to remind myself, I still have the tail of this transplant, plus consolidation therapy (dose-reduced VTD-PACE), plus three years of velcade, revlimid and dex. I'll get there. I'd just rather get there sooner than later. The sooner I get there, the more of this other therapy is used to keep making my body inhospitable for Myeloma, versus trying to get rid of what's already there.
He thought all my labs looked good, although now he's no longer joking about the liver numbers. They're still only mildly elevated but he wants to run liver panels twice a week to check on them. They did NOT come down last time, so I don't anticipate they will be to quick to go down this time, although I'm going to have a little more time off than planned. BB doesn't want me to start consolidation until the week of July 13, in order to give my marrow time to recover. That's fine with me...more time for the M-spike to fall. I'll be on bridging therapy (50% dose-reduced thal and dex) in the meanwhile, so that, also, should cause it to decrease.
When I return, he has ordered another Fine Needle Aspiration of the lesion in my right hip, which is the largest at 3.2cm as of 5/20 (my last PET). It was pushing 8cm at the start of treatment, so it is smaller. But he wants to know what is going on it there. Hopefully it will be gone by the next PET and he won't need the FNA...because readers of the blog will perhaps recall my last experience with the snake-handling religious maniac that does those.
I advised the nurses how it was going to go down this time...that I was going to have an anesthesiologist in the room administering the proper drugs, not a bunch of buffoons standing around saying "yer not gonna remember any of this hahaha!!" while I'm telling them I'm lucid and going to remember every second, which of course I do to this day.
Anyhow.
After five days of nurses looking at that Dex rash on my neck and saying "it'll go away" the nurse in BB's clinic instantly said "gawd what the hell is that on your neck?" and immediately prescribed some creme. It would have been nice to have had this a week ago. Conveniently, the creme came in a drum the size of a canteloupe so I'm not going to be able to bring it on the plane with me.
While back in LA, I'll go to the lab twice a week to have blood drawn, and they gave me the little kits this time so that two extra tubes will be drawn, clotted, spun in a centrifuge and given back to me to overnight to Arkansas for additional tests. They also gave me a pee jug they want me to mail in.
With this in mind, the quote of the day goes to Mike, one of the nurses in the clinic. "If you're like most people, you won't want to carry a jug full of urine on a plane."
Yes, Mike, I am like most people.
I forgot to mention, yesterday I went to lunch at Chick Fil-A, which I had remembered fondly from my youth. They are a chain perhaps most notable for the owner's decision, for reasons of his faith, not to be open on Sundays. I should say that in California, this is notable. In Arkansas, it is hardly unique. In fact on Sunday if you are driving around looking for lunch, your only options are Shlomo's Deli and Habib's Falafel. [crickets] Is this thing on??? Anyhow...sorry to report that Chick Fil-A was not as good as I remembered.
Okay folks. Be well. My next entry will be from home, probably after I get updated labs.
Transplant B, Day +13: Plateau blues
Well, here's where we are. White counts normal, platelets on the rise, CRP falling, red blood counts still low but they'll recover. Electrolytes normal. Uric acid normal. Yippee.
My M-spike has been at 0.4 for the last three pulls, including the one from yesterday. I know that we haven't seen the full effects of the transplant, I know I'm not done with treatment, I know it will continue to fall, I know, I know, I know.
Doesn't matter. It's hard not to be disheartened. My first transplant, from the day before to the day of discharge, took my M-spike from 4.0 down to 1.6. Yes, it later fell to 0.7. But my second transplant has only taken it from 0.7 to 0.4.
Achieving complete remission -- and immunofixation-negative complete remission at that -- is essential. 85% of people that achieve CR in BB's protocol remain in remission 4 years later (that's the farthest that they had data at this point). If one makes it to six years without a relapse, one can consider to be very likely cured.
The fact of the matter is, I'm not there yet. And it's upsetting, to go through this unbelievably aggressive protocol. And now I find myself second guessing...would I be in remission if I'd gone for the standard protocol, with its additional induction cycle and more intense Melphalan, instead of the lite protocol?
I can hear BB dictating comments on another patient from across the hall. Soon it will be my turn, and I'll have lots of questions for him.
My M-spike has been at 0.4 for the last three pulls, including the one from yesterday. I know that we haven't seen the full effects of the transplant, I know I'm not done with treatment, I know it will continue to fall, I know, I know, I know.
Doesn't matter. It's hard not to be disheartened. My first transplant, from the day before to the day of discharge, took my M-spike from 4.0 down to 1.6. Yes, it later fell to 0.7. But my second transplant has only taken it from 0.7 to 0.4.
Achieving complete remission -- and immunofixation-negative complete remission at that -- is essential. 85% of people that achieve CR in BB's protocol remain in remission 4 years later (that's the farthest that they had data at this point). If one makes it to six years without a relapse, one can consider to be very likely cured.
The fact of the matter is, I'm not there yet. And it's upsetting, to go through this unbelievably aggressive protocol. And now I find myself second guessing...would I be in remission if I'd gone for the standard protocol, with its additional induction cycle and more intense Melphalan, instead of the lite protocol?
I can hear BB dictating comments on another patient from across the hall. Soon it will be my turn, and I'll have lots of questions for him.
Sunday, June 7, 2009
Transplant B, Day +11: "Just Say No"...to Gout
Not much to report today. They STILL don't have my M-spike from last Thursday...maybe I'll get it tomorrow. I have another blood draw tomorrow for cancer markers, and I moved my clinic appoint to the earliest one they had (10AM) in the hopes that they might have this data available for BB at my discharge appointment on Tuesday at noon. it seems unlikely.
White blood count was 8.4. Platelets inched up to 31. Hemoglobin is 9.9 (that's where it was yesterday, too...I mistyped). Electrolytes were good, including potassium at 3.7 (go potatoes!)
The only thing a little out of whack was the uric acid. Normal is 3.5 to 7 (m/dl or whatever) and mine was 9.3 yesterday and 9.5 today. Some of this is normal as a result of the body getting rid of the cancer cells, white cells, etc. However, it should have come down by now. There's something called Tumor Lysis Syndrome after chemo that results in a lot of markers being too high. Uric acid is one of these. You don't want prolonged elevation of uric acid, believe me: gout, kidney stones, general renal failure...not so good.
So they gave me a 30-minute infsion of Rasburicase [insert Rasputin joke here, thus making it the SECOND time I've reference Tsarist Russia in my blog). This should significantly reduce the level of uric acid in my system (it evidently sorta "resets" it and is much more powerful -- and expensive -- than the Allopurinol which is what they gave me for uric acid when I first showed up here).
That's about it. Everything else is very normal except CRP which is still in the 60s, but I remain convinced that's from hematopoesis.
Tomorrow, Jill goes back to see the kiddies and I'm here for a couple more days on my lonesome. I'll let you folks know when I get that M-spike data back.
White blood count was 8.4. Platelets inched up to 31. Hemoglobin is 9.9 (that's where it was yesterday, too...I mistyped). Electrolytes were good, including potassium at 3.7 (go potatoes!)
The only thing a little out of whack was the uric acid. Normal is 3.5 to 7 (m/dl or whatever) and mine was 9.3 yesterday and 9.5 today. Some of this is normal as a result of the body getting rid of the cancer cells, white cells, etc. However, it should have come down by now. There's something called Tumor Lysis Syndrome after chemo that results in a lot of markers being too high. Uric acid is one of these. You don't want prolonged elevation of uric acid, believe me: gout, kidney stones, general renal failure...not so good.
So they gave me a 30-minute infsion of Rasburicase [insert Rasputin joke here, thus making it the SECOND time I've reference Tsarist Russia in my blog). This should significantly reduce the level of uric acid in my system (it evidently sorta "resets" it and is much more powerful -- and expensive -- than the Allopurinol which is what they gave me for uric acid when I first showed up here).
That's about it. Everything else is very normal except CRP which is still in the 60s, but I remain convinced that's from hematopoesis.
Tomorrow, Jill goes back to see the kiddies and I'm here for a couple more days on my lonesome. I'll let you folks know when I get that M-spike data back.
Saturday, June 6, 2009
Transplant B, Day 10: Back pain explained, nausea returns, Heinrich Himmler's toilet and other stores...
How's THAT for a headline, eh? :)
I got up at 2AM in agony and took another Dilaudid and another Tylenol. I woke up at 9AM, and THANK GOD the pain was mostly gone. Meanwhile, the Dilaudid really did a number on me. I have felt sick all day -- nausea, headache, exhaustion -- just awful stuff. But it got rid of the pain.
Nonetheless, it is nasty stuff indeed. I told the nurse today that unless my white count was very low, I wanted to talk things over before agreeing to yet another shot of Neupogen. If my count was, say, 2.5 they'd probably want another one, and if it was 4, they might not. So I crossed my fingers.
We went to the hospital, and they drew labs and put me in....the chair the woman died in yesterday. It reminded me of a time when I was working in France. I worked 18 hour days but it was still pretty nice because I was in Paris and stayed at the Hotel George V, one of the great hotels in all of Europe. Now a Four Seasons, at the time it was still independent. I was in Paris for six straight weeks, and the triumvirate at the top of my company (this was before I returned to Disney) stayed at even more expensive hotels (two of them stayed at the Hotel Crillon, one of them at the Hotel Lancaster). The gentleman who stayed at the Hotel Lancaster happened to be Jewish, as are many of my closest friends. And as it turns out, he stayed at the Lancaster because it is owned by people of Jewish descent. I've subsequently stayed there, and it is a lovely hotel, just off the Champs d'Elysees.
The four of us had a business dinner, and we were walking back towards our hotels. As we walked towards the George V, this gentleman said "so, Nick...how's it feel to be sleeping in Gestapo headquarters?" I thought, at first, he was joking, but he was dead serious and seemingly pretty peeved that I'd chosen to stay there. I asked him what he meant. Turns out the George V, during the Vichy Government, was used by the SS as their headquarters in France.
I returned to my room with stooped shoulders from the massive guilt-trip laid on me. As I went about my business that evening, all I could think of was "Himmler probably took a dump in this toilet." It was the last night I stayed in the George V, sadly.
So...fast forward 10 years to today, and here I am sitting in this woman's chair from yesterday, hoping that they had removed the tragic aura from her chair as fastidiously as French chambermaids scrubbed away Himmler's butt-hairs from that toiletseat. It's a peculiar type of dread, and I of course felt renewed sadness for the poor woman and her family. And again, thankfulness for how successful my treatment has gone...so far. :)
As I was pondering this, the nurse came back in with my labs. Jill thought my WBC would be at 7. I thought that was hopelessly optimistic, but thought it might be 3.5, which would at least allow me to make an argument that I didn't need another shot.
WBC was EIGHT POINT FIVE. That's a MASSIVE increase overnight and explains the horrible pain in my bones. Well, it was worth it. No shot needed, no more neutropenia! I engrafted fully in 10 days...pretty darn good and better than my previous transplant.
Platelets bounced up a bit to 28, so I didn't need a bag today. Hopefully they will continue to rise. Neupogen can inhibit platelet formation so I'd expect to see that bouncing more rapidly. Hemoglobin held at around 10.5. That, too, should hopefully increase. CRP went up again to 60, but I'm pretty sure that's a result of all the blood cells being made. Uric acid was high as well, which can happen when whites go up that rapidly.
My electrolytes were pretty good, although Potassium fell to 3.3 today (low normal is 3.5) so I was told to eat five foods with potassium. The only problem is, I felt HORRIBLY nauseous from the Dilaudid. I barely made it out of the hospital. I took some Ragalin when I got home, and that helped, but I was not in the mood to eat anything. Moreover, I had only the second bout of diarrhea last night, so I took some Immodium for that. Immediately followed by Oxycontin. Immediately followed by Dilaudid. Longtime readers can guess what that means.
Now I am scared to death to do anything for fear of GI issues. If I *don't* take a Senna, I could be in for a bad situation. If I *do*, I could be in for an equally bad situation. I'm going to wait it out and see what happens -- if nothing's gone on by noon tomorrow, I'll have no choice but to take the Senna and hope for the best. MC and CL, this update was for you. :) Hope you appreciate it because my more genteel blog readers probably think I am scatalogically obsessed.
So...that brings us to dinner. I managed to eat an ENORMOUS baked potato, and had a glass of orange juice, both very good sources of Potassium. I can't bring myself to eat any more, and I'm exhausted so shortly I will take an Ativan to help with lingering nausea and to assist in getting to sleep, and then I shall lie down.
As of now, though, I'm looking a being discharged on Tuesday. I should get cancer markers back tomorrow from Thursday's blood draw, and hopefully they are nearly gone...I know not to expect too much, though. I'm guessing the M-spike will be 0.3, but maybe with some luck it will be lower. In any case, it's headed in the right direction.
Well...this was a long post but after that curious header it needed to be in order to tie everything together. My only lament is that there isn't a proper medical term for "butthair" as I was really hoping to pull off my humorous commentary without stooping to crudeness. Alas, no such term exists.
I shall leave it to others to take this up with the medical community.
I got up at 2AM in agony and took another Dilaudid and another Tylenol. I woke up at 9AM, and THANK GOD the pain was mostly gone. Meanwhile, the Dilaudid really did a number on me. I have felt sick all day -- nausea, headache, exhaustion -- just awful stuff. But it got rid of the pain.
Nonetheless, it is nasty stuff indeed. I told the nurse today that unless my white count was very low, I wanted to talk things over before agreeing to yet another shot of Neupogen. If my count was, say, 2.5 they'd probably want another one, and if it was 4, they might not. So I crossed my fingers.
We went to the hospital, and they drew labs and put me in....the chair the woman died in yesterday. It reminded me of a time when I was working in France. I worked 18 hour days but it was still pretty nice because I was in Paris and stayed at the Hotel George V, one of the great hotels in all of Europe. Now a Four Seasons, at the time it was still independent. I was in Paris for six straight weeks, and the triumvirate at the top of my company (this was before I returned to Disney) stayed at even more expensive hotels (two of them stayed at the Hotel Crillon, one of them at the Hotel Lancaster). The gentleman who stayed at the Hotel Lancaster happened to be Jewish, as are many of my closest friends. And as it turns out, he stayed at the Lancaster because it is owned by people of Jewish descent. I've subsequently stayed there, and it is a lovely hotel, just off the Champs d'Elysees.
The four of us had a business dinner, and we were walking back towards our hotels. As we walked towards the George V, this gentleman said "so, Nick...how's it feel to be sleeping in Gestapo headquarters?" I thought, at first, he was joking, but he was dead serious and seemingly pretty peeved that I'd chosen to stay there. I asked him what he meant. Turns out the George V, during the Vichy Government, was used by the SS as their headquarters in France.
I returned to my room with stooped shoulders from the massive guilt-trip laid on me. As I went about my business that evening, all I could think of was "Himmler probably took a dump in this toilet." It was the last night I stayed in the George V, sadly.
So...fast forward 10 years to today, and here I am sitting in this woman's chair from yesterday, hoping that they had removed the tragic aura from her chair as fastidiously as French chambermaids scrubbed away Himmler's butt-hairs from that toiletseat. It's a peculiar type of dread, and I of course felt renewed sadness for the poor woman and her family. And again, thankfulness for how successful my treatment has gone...so far. :)
As I was pondering this, the nurse came back in with my labs. Jill thought my WBC would be at 7. I thought that was hopelessly optimistic, but thought it might be 3.5, which would at least allow me to make an argument that I didn't need another shot.
WBC was EIGHT POINT FIVE. That's a MASSIVE increase overnight and explains the horrible pain in my bones. Well, it was worth it. No shot needed, no more neutropenia! I engrafted fully in 10 days...pretty darn good and better than my previous transplant.
Platelets bounced up a bit to 28, so I didn't need a bag today. Hopefully they will continue to rise. Neupogen can inhibit platelet formation so I'd expect to see that bouncing more rapidly. Hemoglobin held at around 10.5. That, too, should hopefully increase. CRP went up again to 60, but I'm pretty sure that's a result of all the blood cells being made. Uric acid was high as well, which can happen when whites go up that rapidly.
My electrolytes were pretty good, although Potassium fell to 3.3 today (low normal is 3.5) so I was told to eat five foods with potassium. The only problem is, I felt HORRIBLY nauseous from the Dilaudid. I barely made it out of the hospital. I took some Ragalin when I got home, and that helped, but I was not in the mood to eat anything. Moreover, I had only the second bout of diarrhea last night, so I took some Immodium for that. Immediately followed by Oxycontin. Immediately followed by Dilaudid. Longtime readers can guess what that means.
Now I am scared to death to do anything for fear of GI issues. If I *don't* take a Senna, I could be in for a bad situation. If I *do*, I could be in for an equally bad situation. I'm going to wait it out and see what happens -- if nothing's gone on by noon tomorrow, I'll have no choice but to take the Senna and hope for the best. MC and CL, this update was for you. :) Hope you appreciate it because my more genteel blog readers probably think I am scatalogically obsessed.
So...that brings us to dinner. I managed to eat an ENORMOUS baked potato, and had a glass of orange juice, both very good sources of Potassium. I can't bring myself to eat any more, and I'm exhausted so shortly I will take an Ativan to help with lingering nausea and to assist in getting to sleep, and then I shall lie down.
As of now, though, I'm looking a being discharged on Tuesday. I should get cancer markers back tomorrow from Thursday's blood draw, and hopefully they are nearly gone...I know not to expect too much, though. I'm guessing the M-spike will be 0.3, but maybe with some luck it will be lower. In any case, it's headed in the right direction.
Well...this was a long post but after that curious header it needed to be in order to tie everything together. My only lament is that there isn't a proper medical term for "butthair" as I was really hoping to pull off my humorous commentary without stooping to crudeness. Alas, no such term exists.
I shall leave it to others to take this up with the medical community.
Friday, June 5, 2009
Transplant B, Day +9: A day for reflection... -and- BACK ON DILAUDID?!?!?!?
Hello there, folks.
First, the labs: WBC at 1.48, so tomorrow (hopefully) I won't be neutropenic. Platelets are at 23; we'll see if they hold tomorrow. It will be close. RBC fell (Hemoglobin at 9.9 today) but that may be a function of drinking more water . Kidney function is great. Liver function is finally starting to return to normal levels (2 of 3 metrics are normal, 1 is still high). Electrolytes are fine. CRP went up to 50, but I'm still feeling good (or was at the time) so we all think it is the impact of the Neupogen growth factor.
The only complaint I had other than tiredness was some persistent lower back pain, which I'd had a little of before so I know it's from the growth factor, which is raising hell in my bone marrow trying to get the system up and running. Like Fonzy smacking the jukebox. Poor jukebox.
They gave me a Tylenol, after they determined I wasn't running a fever, and this seemed to take some of the bite off the pain. Tylenol would normally be reserved to reduce my fever, since if I get a fever I'm pretty hosed without an immune system. We know from last time 'round that I'm going to have a fever at some point as my blood is being manufactured, so I want to be prepared for if. If I'm on the Tylenol for pain, we won't be able to determine if I'm running a fever from an infection, since Tylenol will reduce a fever by a couple of degrees. I want to know something is up before I hit 101 and have to rush to the ER.
Armed with that knowledge, we left the hospital. Fast-forward six hours, and I'm in agony. It feels like somebody has stuck two railroad spikes deep into the small of my back and is rotating them around. It's horrible.
With some reluctance, I popped some Hillbilly Heroin (Oxycontin) at around 9PM local. By 9:35, we're on the line with the hospital. This feels in some ways worse than when my back was broken. At least with that, I could find a position to lie in that didn't put pressure on the fracture. This is unremitting. Sitting, kneeling, standing, on my back, side, stomach...nothing makes a difference.
So on the advice of the attending physician, I took a 2mg Dilaudid along with a Tylenol. Currently in bed, hoping this horrible stuff kicks in soon. This SUCKS.
Normally, they will continue to administer Neupogen until there are two consecutive days above 2.0 on the WBC scale. Today mine was 1.48. If it's high enough tomorrow, they may bypass the shot...but if it's only 3-4, they will want to give me another shot. I may veto it on the basis of this pain.
Now...having said all this, I'm very, very, very fortunate.
In the wake of the American Cancer Society statistics on five-year survival for Myeloma (34%) and the strikingly higher success that BB has achieved here, I've thought a lot about why everybody doesn't come to do this. Certainly a lot of it is luck...if somebody shows up in the ER with a broken rib, and blood tests turn up Myeloma, whomever the on-staff hematologist / oncologist is will put the person on whatever protocol they feel like using. This is still a rare cancer. And the data from Total Therapy 3 (which has the truly impressive statistics for event-free survival, sustained remission, and *cure*, to use the magic word) is only a year or so old, in terms of its general publication (data had been collected for 3-4 years before). In part, the protocol here will be used more broadly as a natural result of the success here and the realization by the broader MM medical community that this is a highly effective treatment for a majority of newly-diagnosed patients.
Having said this...the Autologous Stem Cell Transplant is not a trivial procedure. As it turns out, this way of resetting the immune system isn't used unless the patient faces likely death without it. For cases of immune system disorders -- even serious ones like Lupus -- they won't do this. And I've now had this done twice.
Total Therapy has a 5% treatment-related mortality rate. Many people who contract this disease are quite old -- it is a disease of the elderly, after all -- and many may not be in great health. I'm sure those factors contribute to the TRM figure. By the way, when I first wrote of the 7th floor, I mentioned cadaverous patients looking like they're waiting for death. The man I saw two months ago, I saw again yesterday. He's 89. When I first saw him, he was bent over almost 90 degrees, leaning on a walker. Now, he walks tall and erect, on his own power, occasionally leaning on a cane. He's on the mend.
But he's survived a difficult procedure...one that is used sparingly and only if death is a likelihood without it. I've had this done twice, and I've made it through very well, tonight's pain notwithstanding.
Not everyone is so lucky.
Today, a woman in her 50s received a stem cell transplant. She probably checked into her room 30 minutes before Jill and I arrived at the 7th floor today. Just like with me, they probably pre-medicated her with Benadryl and then hung the bag of her stem cells. Just like with me, the APN stayed in her room after verifying the right cells were being given. This was probably right as Jill and I, now signed in, sat down in the waiting room, thirty feet down the hall.
Loud beeping started. Nurses scrambled. One shouted "call the code!" Carts were pushed rapidly down the hallway. Everybody swarmed into action. Jill saw a young woman in the hallway, talking with two nurses.
Ten minutes later the woman was dead.
It was a horrible day. I didn't quite feel guilty for making it through better than this woman, but I did feel tremendous sorrow (as did Jill, who offered to stay with the woman's 22-year old daughter). It seems the family was here from Jamaica. The woman's husband returned this morning to Jamaica because their daughter, who had just graduated from college, arrived today to relieve him.
How horrible.
So with every wave of pain that pulses through me, I am thankful. Thankful that I was diagnosed early, thankful that I had time to research where to have this done, thankful for the work of BB and his team for the last 20 years that has put them in a place to believe they are curing a large portion of patients...and thankful to God and science that I've made it through as well as I have.
There's an Italian restaurant here that has a dish named after my doctor. We went there a few weeks ago -- it's pretty tasty -- and sat beneath a large framed newspaper article about BB. The author of the piece, which was written about 10 years ago, said that patients who are diagnosed with Multiple Myeloma are "in the grip of a devil." It's a terrible disease...necessitating a terrible treatment...and I'm lucky to survive both.
Be well everyone.
First, the labs: WBC at 1.48, so tomorrow (hopefully) I won't be neutropenic. Platelets are at 23; we'll see if they hold tomorrow. It will be close. RBC fell (Hemoglobin at 9.9 today) but that may be a function of drinking more water . Kidney function is great. Liver function is finally starting to return to normal levels (2 of 3 metrics are normal, 1 is still high). Electrolytes are fine. CRP went up to 50, but I'm still feeling good (or was at the time) so we all think it is the impact of the Neupogen growth factor.
The only complaint I had other than tiredness was some persistent lower back pain, which I'd had a little of before so I know it's from the growth factor, which is raising hell in my bone marrow trying to get the system up and running. Like Fonzy smacking the jukebox. Poor jukebox.
They gave me a Tylenol, after they determined I wasn't running a fever, and this seemed to take some of the bite off the pain. Tylenol would normally be reserved to reduce my fever, since if I get a fever I'm pretty hosed without an immune system. We know from last time 'round that I'm going to have a fever at some point as my blood is being manufactured, so I want to be prepared for if. If I'm on the Tylenol for pain, we won't be able to determine if I'm running a fever from an infection, since Tylenol will reduce a fever by a couple of degrees. I want to know something is up before I hit 101 and have to rush to the ER.
Armed with that knowledge, we left the hospital. Fast-forward six hours, and I'm in agony. It feels like somebody has stuck two railroad spikes deep into the small of my back and is rotating them around. It's horrible.
With some reluctance, I popped some Hillbilly Heroin (Oxycontin) at around 9PM local. By 9:35, we're on the line with the hospital. This feels in some ways worse than when my back was broken. At least with that, I could find a position to lie in that didn't put pressure on the fracture. This is unremitting. Sitting, kneeling, standing, on my back, side, stomach...nothing makes a difference.
So on the advice of the attending physician, I took a 2mg Dilaudid along with a Tylenol. Currently in bed, hoping this horrible stuff kicks in soon. This SUCKS.
Normally, they will continue to administer Neupogen until there are two consecutive days above 2.0 on the WBC scale. Today mine was 1.48. If it's high enough tomorrow, they may bypass the shot...but if it's only 3-4, they will want to give me another shot. I may veto it on the basis of this pain.
Now...having said all this, I'm very, very, very fortunate.
In the wake of the American Cancer Society statistics on five-year survival for Myeloma (34%) and the strikingly higher success that BB has achieved here, I've thought a lot about why everybody doesn't come to do this. Certainly a lot of it is luck...if somebody shows up in the ER with a broken rib, and blood tests turn up Myeloma, whomever the on-staff hematologist / oncologist is will put the person on whatever protocol they feel like using. This is still a rare cancer. And the data from Total Therapy 3 (which has the truly impressive statistics for event-free survival, sustained remission, and *cure*, to use the magic word) is only a year or so old, in terms of its general publication (data had been collected for 3-4 years before). In part, the protocol here will be used more broadly as a natural result of the success here and the realization by the broader MM medical community that this is a highly effective treatment for a majority of newly-diagnosed patients.
Having said this...the Autologous Stem Cell Transplant is not a trivial procedure. As it turns out, this way of resetting the immune system isn't used unless the patient faces likely death without it. For cases of immune system disorders -- even serious ones like Lupus -- they won't do this. And I've now had this done twice.
Total Therapy has a 5% treatment-related mortality rate. Many people who contract this disease are quite old -- it is a disease of the elderly, after all -- and many may not be in great health. I'm sure those factors contribute to the TRM figure. By the way, when I first wrote of the 7th floor, I mentioned cadaverous patients looking like they're waiting for death. The man I saw two months ago, I saw again yesterday. He's 89. When I first saw him, he was bent over almost 90 degrees, leaning on a walker. Now, he walks tall and erect, on his own power, occasionally leaning on a cane. He's on the mend.
But he's survived a difficult procedure...one that is used sparingly and only if death is a likelihood without it. I've had this done twice, and I've made it through very well, tonight's pain notwithstanding.
Not everyone is so lucky.
Today, a woman in her 50s received a stem cell transplant. She probably checked into her room 30 minutes before Jill and I arrived at the 7th floor today. Just like with me, they probably pre-medicated her with Benadryl and then hung the bag of her stem cells. Just like with me, the APN stayed in her room after verifying the right cells were being given. This was probably right as Jill and I, now signed in, sat down in the waiting room, thirty feet down the hall.
Loud beeping started. Nurses scrambled. One shouted "call the code!" Carts were pushed rapidly down the hallway. Everybody swarmed into action. Jill saw a young woman in the hallway, talking with two nurses.
Ten minutes later the woman was dead.
It was a horrible day. I didn't quite feel guilty for making it through better than this woman, but I did feel tremendous sorrow (as did Jill, who offered to stay with the woman's 22-year old daughter). It seems the family was here from Jamaica. The woman's husband returned this morning to Jamaica because their daughter, who had just graduated from college, arrived today to relieve him.
How horrible.
So with every wave of pain that pulses through me, I am thankful. Thankful that I was diagnosed early, thankful that I had time to research where to have this done, thankful for the work of BB and his team for the last 20 years that has put them in a place to believe they are curing a large portion of patients...and thankful to God and science that I've made it through as well as I have.
There's an Italian restaurant here that has a dish named after my doctor. We went there a few weeks ago -- it's pretty tasty -- and sat beneath a large framed newspaper article about BB. The author of the piece, which was written about 10 years ago, said that patients who are diagnosed with Multiple Myeloma are "in the grip of a devil." It's a terrible disease...necessitating a terrible treatment...and I'm lucky to survive both.
Be well everyone.
Thursday, June 4, 2009
Transplant B, Day +8: Turning the corner
Another uneventful day in the lab. WBC crept up from 0.03 to 0.17, which hopefully means that I have two more days of Neutropenia at most. Immature reticulocytes quadrupled today and are now squarely in the normal range -- that probably means my whites will be in the normal range in four days. Hemoglobin at 10.8, basically the same from yesterday. Platelets were 14, so I got another infusion. CRP is at 40, but all my bloodwork is negative for viruses and bacteria, so the APN and I both believe it's from the Neupogen shots and the ensuing hematpoesis (blood manufacturing). All my electrolytes were in good shape.
On the basis of this, I have a discharge appointment scheduled for next Tuesday, which is two days earlier than I thought and at 12 days after transplant, pretty darn good! I'll have cancer markers from the blood draw today back on Saturday or Sunday, and that's probably the most up-to-date data we'll have for Tuesday -- we MIGHT get data from the Monday draw but I doubt it. I hope the M-spike is continuing to fall...I don't expect it to be zero before I leave, unfortunately, but if it is 0.2 or even better 0.1, I'll be happy because I'm sure it will continue to fall.
They'll do another bone marrow, of course, when I return here before consolidation. I'm guessing that will be done in the first week of July. And that will be the time to see if the immunofixation test is negative. So I've got a month to get rid of the last of these damn cells.
Anyhow, a great day in general, and I'm almost through this third of the fourth treatments. To celebrate, I issued a double-dog-dare to my digestive tract and got some Chicken Vindaloo. Yum!!!!
Go Lakers!
On the basis of this, I have a discharge appointment scheduled for next Tuesday, which is two days earlier than I thought and at 12 days after transplant, pretty darn good! I'll have cancer markers from the blood draw today back on Saturday or Sunday, and that's probably the most up-to-date data we'll have for Tuesday -- we MIGHT get data from the Monday draw but I doubt it. I hope the M-spike is continuing to fall...I don't expect it to be zero before I leave, unfortunately, but if it is 0.2 or even better 0.1, I'll be happy because I'm sure it will continue to fall.
They'll do another bone marrow, of course, when I return here before consolidation. I'm guessing that will be done in the first week of July. And that will be the time to see if the immunofixation test is negative. So I've got a month to get rid of the last of these damn cells.
Anyhow, a great day in general, and I'm almost through this third of the fourth treatments. To celebrate, I issued a double-dog-dare to my digestive tract and got some Chicken Vindaloo. Yum!!!!
Go Lakers!
Wednesday, June 3, 2009
Transplant B, Day +7: Lies, Damn Lies and Statistics
Uneventful day at the hospital. Whites skyrocketed to 0.03. Immature reticulocytes went up from .24 to .32, so the climb is beginning...probably five more days before a major white rebound, is my guess. Hemoglobin fell to 10.6 and I'm feeling it...more tired today than before. Platelets jumped after my infusion yesterday from 8 to 50, but fell to 23 today, so I'll need more tomorrow.
CRP is over 20. I feel fine, but we want that number to come down. I'm hoping it was just because i didn't sleep as much last night and am more worn out.
Otherwise, doing fine.
The American Cancer Society recently published statistics on the eight most lethal cancers, one of which is Myeloma. According to this 2009 data, the five year survival rate of Myeloma from diagnosis is 34%. That's sobering data. Meanwhile, BB's data shows that 80% of his patients are still alive after four years...and if I can get into complete remission, I've got an 85% chance of remaining in complete remission in four years. I need to get that damn M-spike down to zero!!!
On that note, tumor marker data from Monday was available today. M-spike at 0.4, IgG now at 780. I'm sure it will continue to come down, but I want it at ZERO.
Be well, everyone!
CRP is over 20. I feel fine, but we want that number to come down. I'm hoping it was just because i didn't sleep as much last night and am more worn out.
Otherwise, doing fine.
The American Cancer Society recently published statistics on the eight most lethal cancers, one of which is Myeloma. According to this 2009 data, the five year survival rate of Myeloma from diagnosis is 34%. That's sobering data. Meanwhile, BB's data shows that 80% of his patients are still alive after four years...and if I can get into complete remission, I've got an 85% chance of remaining in complete remission in four years. I need to get that damn M-spike down to zero!!!
On that note, tumor marker data from Monday was available today. M-spike at 0.4, IgG now at 780. I'm sure it will continue to come down, but I want it at ZERO.
Be well, everyone!
Tuesday, June 2, 2009
Transplant B, Day +6: Platelets and other news...
So...another uneventful day, for the most part. Whites are at 0.02, which was where they bottomed out before. Hemoglobin still north of 11. Platelets fell to 8, so I got a bag today, and I'll probably need more tomorrow based on last time. Electrolytes are all in good shape, CRP is down to just over 10. All good.
Shared the room with the same guy from yesterday and a different daughter (presumably not one getting married in a feed store although I bet she's no stranger to such events) and I'm not sure the guy stopped talking at any point in the intermitting 24 hours between visits. Nice enough fellow (or fella, or even feller) though, and I hope the treatment works for him. He's on the standard branch and is three weeks after his first transplant, and his whites are still not high enough for him to be discharged. He's also got (per a variety of stories he told) nausea, colitis, the shakes, voices in his head, "the boo-hoos" and panic attacks. Okay, I made up the voices part. But not the rest.
I'm fortunate to be weathering this as well as I have been.
I learned two new things to look for clinically. The first is Immature Reticulocytes. These are, I guess, baby white blood cells. The count there will double approximately four days before white blood cells rebound. As of now, they are stable and low, so I'm probably at least four days out from the end of neutropenia. No problem, so long as I don't get sick!
The second thing, and the ultimate goal, is now a little more specific. Once the M-spike has fallen to zero and cannot be observed in the normal blood analysis, it is then subject to a more sensitive test called immunofixation. It's possible for the normal protein electrophoresis to show a zero M-spike, and still have M-protein under immunofixation analysis. So what we are looking for is technically called "Immunofixation-Negative Complete Remission." I will obviously keep the blog updated on that!
Having said this, I couldn't resist a peek at my tumor markers. The most recent ones were drawn last Thursday (I had more drawn yesterday but the results are still in the lab). Now mind you, the purpose of the chemo/transplant process is to kill my blood off and replace it with new blood. The old blood is now dead (the white blood cell count is a good proxy for the overall blood system) but as of last Thursday, a lot of the blood was kicking around. So as an indication of the effectiveness of the therapy, anything drawn before this upcoming Thursday is probably not worth a whole lot.
Nonetheless, I checked out the data from five days ago. M-spike at 0.5 (dammit I know it won't have bottomed out yet but I really wanted it to be zero!) and IgG at 890. IgG is now well within normal range (700-1400) so that is a good sign. Obviously, we want that M-spike to be 0.0 and we want negative results from immunifixation analysis. A watched M-spike never drops, as they say. But mine will, and you'll be updated every step of the way.
Feeling good, albeit exhausted still. The horrible rash from the Dex appears to be subsiding and with any luck it will be gone in the next few days.
Onward!
Shared the room with the same guy from yesterday and a different daughter (presumably not one getting married in a feed store although I bet she's no stranger to such events) and I'm not sure the guy stopped talking at any point in the intermitting 24 hours between visits. Nice enough fellow (or fella, or even feller) though, and I hope the treatment works for him. He's on the standard branch and is three weeks after his first transplant, and his whites are still not high enough for him to be discharged. He's also got (per a variety of stories he told) nausea, colitis, the shakes, voices in his head, "the boo-hoos" and panic attacks. Okay, I made up the voices part. But not the rest.
I'm fortunate to be weathering this as well as I have been.
I learned two new things to look for clinically. The first is Immature Reticulocytes. These are, I guess, baby white blood cells. The count there will double approximately four days before white blood cells rebound. As of now, they are stable and low, so I'm probably at least four days out from the end of neutropenia. No problem, so long as I don't get sick!
The second thing, and the ultimate goal, is now a little more specific. Once the M-spike has fallen to zero and cannot be observed in the normal blood analysis, it is then subject to a more sensitive test called immunofixation. It's possible for the normal protein electrophoresis to show a zero M-spike, and still have M-protein under immunofixation analysis. So what we are looking for is technically called "Immunofixation-Negative Complete Remission." I will obviously keep the blog updated on that!
Having said this, I couldn't resist a peek at my tumor markers. The most recent ones were drawn last Thursday (I had more drawn yesterday but the results are still in the lab). Now mind you, the purpose of the chemo/transplant process is to kill my blood off and replace it with new blood. The old blood is now dead (the white blood cell count is a good proxy for the overall blood system) but as of last Thursday, a lot of the blood was kicking around. So as an indication of the effectiveness of the therapy, anything drawn before this upcoming Thursday is probably not worth a whole lot.
Nonetheless, I checked out the data from five days ago. M-spike at 0.5 (dammit I know it won't have bottomed out yet but I really wanted it to be zero!) and IgG at 890. IgG is now well within normal range (700-1400) so that is a good sign. Obviously, we want that M-spike to be 0.0 and we want negative results from immunifixation analysis. A watched M-spike never drops, as they say. But mine will, and you'll be updated every step of the way.
Feeling good, albeit exhausted still. The horrible rash from the Dex appears to be subsiding and with any luck it will be gone in the next few days.
Onward!
Monday, June 1, 2009
Transplant B, Day +5: Full-blown neutropenia
As expected, WBC crashed today to 0.16. Hopefully it will only be here another 4-5 days -- we'll be watching closely. I'm sure it will get lower before it starts to climb. Platelets at 22, so tomorrow I'll need a bag. Hemoglobin at 11.4, which they think is slightly overstated due to being dehydrated (I begged to differ with the nurse on this...just because I've lost 15 of the 20 water-weight pounds doesn't make me dehydrated...but they gave me fluids anyway). But regardless, reds are higher than they were last time, which is good for the energy.
Now it's a waiting game for the new immune system to engraft. Will keep you all posted!
Oh, notably, shared a room with a family from the sticks. Overheard: daughter planning an after-party for her wedding in a feed store; mother claiming "that sounds too redneck."
No, not making that up.
Now it's a waiting game for the new immune system to engraft. Will keep you all posted!
Oh, notably, shared a room with a family from the sticks. Overheard: daughter planning an after-party for her wedding in a feed store; mother claiming "that sounds too redneck."
No, not making that up.
Sunday, May 31, 2009
Transplant B, Day +4: Whites hanging on
Another uneventful day in the infusion center. White counts are around 1, which means tomorrow should be a full-blown crash just like last time. Hemoglobin is at 11.1, which is higher than before, and seems to indicate that I won't need a blood transfusion, which is good. Platelets fell to 32 today, which means I will probably need a bag tomorrow.
Electrolytes were in good shape, so no potassium infuser is needed. CRP is at 11 and change, which is (I think) to be expected given the struggle of my marrow to start making blood. I've also got a nasty rash from the treatment which looks like severe acne on my neck. I'm told this will go away on its own, but it looks gnarly and is likely responsible for part of the CRP increase.
I'll head back tomorrow for more of the same. No tumor marker data yet -- probably won't get that until Thursday or possibly Saturday but I'll be keeping an eye peeled for it!
Be well everybody.
Electrolytes were in good shape, so no potassium infuser is needed. CRP is at 11 and change, which is (I think) to be expected given the struggle of my marrow to start making blood. I've also got a nasty rash from the treatment which looks like severe acne on my neck. I'm told this will go away on its own, but it looks gnarly and is likely responsible for part of the CRP increase.
I'll head back tomorrow for more of the same. No tumor marker data yet -- probably won't get that until Thursday or possibly Saturday but I'll be keeping an eye peeled for it!
Be well everybody.
Saturday, May 30, 2009
Transplant B, Day +3: Temporary white spike...
Just like last time. The urging of the Neupogen shot made what's left of my poor dying bone marrow give up its white cells, and my WBC is now in the 5.X range. That should mean that tomorrow or at the latest Monday will be the huge crash, which is the necessary rite of passage to new cancer-free bone marrow, so we're on the right track.
Everything else was good today -- didn't need platelets and my electrolytes (Potassium, Magnesium, etc.) were all in balance. We were in and out of the 7th floor in half an hour (they called later with lab results since the lab was behind and they didn't want me to have to wait).
I took a two hour nap in the late afternoon and that seems to have helped with energy. I've lost 10 pounds of water-weight...still have another 10 to go. Eating like a horse so I'm not sure how much I'll be able to get rid of simply by processing water, but hopefully I'll get back to where I was before the Dex took hold.
Have a good weekend, everyone!
Everything else was good today -- didn't need platelets and my electrolytes (Potassium, Magnesium, etc.) were all in balance. We were in and out of the 7th floor in half an hour (they called later with lab results since the lab was behind and they didn't want me to have to wait).
I took a two hour nap in the late afternoon and that seems to have helped with energy. I've lost 10 pounds of water-weight...still have another 10 to go. Eating like a horse so I'm not sure how much I'll be able to get rid of simply by processing water, but hopefully I'll get back to where I was before the Dex took hold.
Have a good weekend, everyone!
Transplant B, Day +2: Maniac Nurse
Everything seems to be happening more rapidly this time.
I'm feeling pretty good. I had one bout of GI issues the night before last, and I was seriously regretting my decision to get the "volcano sauce" at the Whole Hog BBQ, but old habits die hard, I suppose. Anyhow, two Immodium later and I've been okay since...keeping my fingers crossed.
I went to the 7th floor yesterday and in contrast to previous days, it was a long, drawn-out experience. The floor was full. Evidently there had been a transplant yesterday with some complications and that threw everything off. But eventually, I was called in for vitals, which checked out. No nausea, the one bout of GI problems, otherwise doing well. So far, so good.
THANKFULLY, my body has started relinquishing the fluid that it's been hoarding for a week. I'm down six pounds from yesterday. Hopefully that trend will continue. I have been eating like a horse (this is advised to keep up one's strength during the transplant process, so I've been bowing to my appetite). Most of the weight I have gained, though, should be coming off.
Things were moving along fine until the nurse tried to draw blood from my lines. Bone dry. This happens once in a while, and they tell me to breathe deeply and that usually starts the stuff flowing. No dice this time. They generally use Heparin to make sure nothing in the line clots, and putting a bit more heparin in the lines has done the trick before. The assigned nursed tried a different tack, though. She thought it would be a good idea to suddenly jam about 50ccs of saline in rapid succession into the three lines, slamming on the plungers like she was administering an adrenaline shot through the breastbone. I started getting lightheaded. She started cackling knowingly.
I kept getting more lightheaded...I heard "hyuk hyuk hyuk...you feelin' like yur gonna pass out on me??? hyuk hyuk hyuk" as my field of vision blurred. She ran my blood pressure. It had been 135 over 80 but was now 80 over 50. I've always wanted slightly lower blood pressure but anytime I see 80/50 on a TV show it is usually followed by something dire. I laid down on a chair and after a minute or two (during which time the nurse showed my blood pressure numbers in a conspiratorial fashion to the APN/nurse in charge, which rubbed me the wrong way) I started feeling better.
With that scare out of the way, we waited on labs while the nurse tried to explain that the light-headedness sometimes happens and I wondered if the light-headedness happens without the nurse acting like she's abruptly trying to release the Hoover Dam into my chest. The labs themselves were good: white blood count at 1.0, platelets at 97, hemoglobin holding at 11, CRP at 5.8 and Potassium at a healthy 4.4, meaning for once no more infusers were needed. I'd had TWO huge baked potatoes the previous day, and wasn't keen on having another, so I was pleased I didn't need it.
The rest of the day was uneventful, although it took us a good 90 minutes to get them to prepare the broad-spectrum antibiotic that they want me to have on hand in the event of a fever over the weekend, and to get the first of 6-10 dreaded growth factor shots.
Since Neutropenia has happened a couple of days faster post-transplant than the last time, I wonder if my recovery will take the same amount of time, or shorter, or longer. Hopefully it will be 7-8 days of Neutropenia just as last time, which will mean I'll be on the other side of this transplant sooner rather than later.
I got a good night's sleep last night, and my stomach has settled, so right now I'm just fighting the tiredness that comes from being wiped out...and that's pretty manageable so far. Will post an update after labs today.
I'm feeling pretty good. I had one bout of GI issues the night before last, and I was seriously regretting my decision to get the "volcano sauce" at the Whole Hog BBQ, but old habits die hard, I suppose. Anyhow, two Immodium later and I've been okay since...keeping my fingers crossed.
I went to the 7th floor yesterday and in contrast to previous days, it was a long, drawn-out experience. The floor was full. Evidently there had been a transplant yesterday with some complications and that threw everything off. But eventually, I was called in for vitals, which checked out. No nausea, the one bout of GI problems, otherwise doing well. So far, so good.
THANKFULLY, my body has started relinquishing the fluid that it's been hoarding for a week. I'm down six pounds from yesterday. Hopefully that trend will continue. I have been eating like a horse (this is advised to keep up one's strength during the transplant process, so I've been bowing to my appetite). Most of the weight I have gained, though, should be coming off.
Things were moving along fine until the nurse tried to draw blood from my lines. Bone dry. This happens once in a while, and they tell me to breathe deeply and that usually starts the stuff flowing. No dice this time. They generally use Heparin to make sure nothing in the line clots, and putting a bit more heparin in the lines has done the trick before. The assigned nursed tried a different tack, though. She thought it would be a good idea to suddenly jam about 50ccs of saline in rapid succession into the three lines, slamming on the plungers like she was administering an adrenaline shot through the breastbone. I started getting lightheaded. She started cackling knowingly.
I kept getting more lightheaded...I heard "hyuk hyuk hyuk...you feelin' like yur gonna pass out on me??? hyuk hyuk hyuk" as my field of vision blurred. She ran my blood pressure. It had been 135 over 80 but was now 80 over 50. I've always wanted slightly lower blood pressure but anytime I see 80/50 on a TV show it is usually followed by something dire. I laid down on a chair and after a minute or two (during which time the nurse showed my blood pressure numbers in a conspiratorial fashion to the APN/nurse in charge, which rubbed me the wrong way) I started feeling better.
With that scare out of the way, we waited on labs while the nurse tried to explain that the light-headedness sometimes happens and I wondered if the light-headedness happens without the nurse acting like she's abruptly trying to release the Hoover Dam into my chest. The labs themselves were good: white blood count at 1.0, platelets at 97, hemoglobin holding at 11, CRP at 5.8 and Potassium at a healthy 4.4, meaning for once no more infusers were needed. I'd had TWO huge baked potatoes the previous day, and wasn't keen on having another, so I was pleased I didn't need it.
The rest of the day was uneventful, although it took us a good 90 minutes to get them to prepare the broad-spectrum antibiotic that they want me to have on hand in the event of a fever over the weekend, and to get the first of 6-10 dreaded growth factor shots.
Since Neutropenia has happened a couple of days faster post-transplant than the last time, I wonder if my recovery will take the same amount of time, or shorter, or longer. Hopefully it will be 7-8 days of Neutropenia just as last time, which will mean I'll be on the other side of this transplant sooner rather than later.
I got a good night's sleep last night, and my stomach has settled, so right now I'm just fighting the tiredness that comes from being wiped out...and that's pretty manageable so far. Will post an update after labs today.
Thursday, May 28, 2009
Transplant B, Day +1: Some things I've learned
1. It is possible to gain TWENTY POUNDS of water weight in a week. I am so bloated I can barely move.
2. After a transplant, taking a sleep aid is essential. I got not a single wink last night. Tonight I'll try Ativan or Ambien depending on how tired I am. All the messing about with Thaldomide and Dex has thrown my internal clock for a loop.
3. If the embroidery woman in the waiting room tries to strike up a conversation, pretend you are from Kyrgyzstan and don't speak English. I cannot overstate the importance of this lesson.
4. I don't like diarrhea. I really don't care for it at all.
White counts are down to 3.18, but not yet neutropenic. Hemoglobin at 10.6, essentially stable and I hope it doesn't go any lower. Platelets at 91. It seems the crash is coming on faster now than with the last transplant, which is fine so long as the rebound occurs faster as well!
My Potassium is still not cooperating, so I have two more infusers to go. Liver numbers still haywire from the Fluconazole, Velcade and whatever other poison is irritating it, but they aren't alarmingly high so we'll press on. CRP still low, which is good because I have fluid in my lungs (along with everyplace else in my body) and I wanted to make sure that's just a function of bloating rather than anything else. Kidney function is still good.
On the protein side of things, total protein and albumin both fell. The albumin we want to be high, but it's really the ratio of the nasty M-protein to the albumin that we want to watch. Total protein is the lowest it has been (5.1, low normal is 6.5) so I am hoping the M-component of that is now zero...but I know that we won't get an accurate read on that until the labs that are drawn a week from today, so I'm anticipating news on the cancer markers in about 9 days. Seems a long time to wait, but hopefully it will be worth it.
More news as events merit!
2. After a transplant, taking a sleep aid is essential. I got not a single wink last night. Tonight I'll try Ativan or Ambien depending on how tired I am. All the messing about with Thaldomide and Dex has thrown my internal clock for a loop.
3. If the embroidery woman in the waiting room tries to strike up a conversation, pretend you are from Kyrgyzstan and don't speak English. I cannot overstate the importance of this lesson.
4. I don't like diarrhea. I really don't care for it at all.
White counts are down to 3.18, but not yet neutropenic. Hemoglobin at 10.6, essentially stable and I hope it doesn't go any lower. Platelets at 91. It seems the crash is coming on faster now than with the last transplant, which is fine so long as the rebound occurs faster as well!
My Potassium is still not cooperating, so I have two more infusers to go. Liver numbers still haywire from the Fluconazole, Velcade and whatever other poison is irritating it, but they aren't alarmingly high so we'll press on. CRP still low, which is good because I have fluid in my lungs (along with everyplace else in my body) and I wanted to make sure that's just a function of bloating rather than anything else. Kidney function is still good.
On the protein side of things, total protein and albumin both fell. The albumin we want to be high, but it's really the ratio of the nasty M-protein to the albumin that we want to watch. Total protein is the lowest it has been (5.1, low normal is 6.5) so I am hoping the M-component of that is now zero...but I know that we won't get an accurate read on that until the labs that are drawn a week from today, so I'm anticipating news on the cancer markers in about 9 days. Seems a long time to wait, but hopefully it will be worth it.
More news as events merit!
Wednesday, May 27, 2009
Transplant B, Day 0: Did somebody get the number of that bus...
I forgot how much this takes outtaya, red blood counts be damned (mine are down to 10.8 at this point...by the way, I track red blood count in Hemoglobin...my actual RBC is between 3 and 4, which is low, but Hemoglobin needs to stay about 8 otherwise I need an infusion, so that's the number I look at).
Got my stem cells today. 7.9 million of them, versus 3.9 million last time. This leaves me with about 17 million more -- enough for three transplants or so, not that I'll think I'll ever need them. I asked about them giving me more in an effort to speed engraftment but they said it makes no difference. They usually give more the second time, and anything beyond that is just kinda picking out a bag and seeing how many cells are in it (I got two bags). I compared this to going to the grocer and wanting 1.5 pounds of good quality tuna steak and seeing how many filets of different sizes it takes to get to the right total weight. There was at least dim recognition in the eyes of the nurse so I gather the metaphor translated.
My kidneys are not doing a good job of retaining Potassium, so the two infusers I had yesterday must be repeated. They also gave me a pill (Spironolactone) that is supposed to encourage the kidneys to retain potassium rather than pee it all away, so I'll add back one more pill to the (thankfully) dwindling regimen. I'm down to the antifungal, antiviral, antibiotic, antiflu and now anti-peeing-out-potassium.
After the transplant, my heart rate was 120 and my blood pressure was around 165 over 97. They kept me for a couple of hours to monitor this, but at the end of the day it's all the damn fluid retension from the Dex. I'm up FIFTEEN POUNDS in five days. Ugh. Soon, I'll be peeing all this out but in the meantime my ankles are so swollen it hurts to wear shoes and I can barely move around. I feel like the guy at the end of the Monty Python sketch where he's eaten too much and is swelling to the point of bursting. Or, rather, one of the Thunders from Big Trouble in Little China who just expands until he explodes.
Yeah...THIS guy:
Anyhow, hopefully that is temporary.
Other than the potassium, the transitory high blood pressure, and the utter exhaustion, I feel pretty good, all things considered. For those interested in poop, I'll be discontinuing the Senna -- bracing myself for diarrhea at this point. I have to say, I went back and read all that stuff I wrote while I was doped up on Dilaudid and it's pretty damn funny but I'm not sure I'm going to have too many more Merciless Turds from Outer Space stories on here, so those yucks may be behind us. I'll have to find more fertile ground for humor. It's getting harder, though...people here are so nice and devoted to my care that it's not that easy to mock them relentlessly. :)
On the subject of sweet sentiment, we were treated to a very nice moment today. I was wearing a shirt given to me by the good people at PinnacleCare that reads "Cancer Sucks." Seemed like an appropriate "stick it to the man" type thing to wear on such an auspicious day as my second stem cell transplant. Jill and I went out to lunch at an upscale burger joint called Cheers, since I still have white cells and soon I'll be under bubble-boy lockdown in the apartment so we're enjoying the ability to go out when we can. We had finished our lunch when we were told that a nice young couple with their young son sitting outside had paid our tab.
We went out and spoke with this lovely couple from Chicago for about 20 minutes. Lance had been treated here for Myeloma, after diagnosis in his early 30s. He began treatment elsewhere and it didn't take, so he came here and went off protocol, did SuperBeam plus some very strong Velcade therapy, but it wiped out the Myeloma. He and his wife were dining once and had their tab paid for by others under similar circumstances and decided to keep the good will / karmic wheel rolling. Jill and I were very, very touched and will keep this in mind -- sooner or later there'll be a similar opportunity. I thought back to when I gave the guy that cut my hair some money to pay for a child that couldn't afford it...that time of thing is a small gesture but very meaningful when you are on the receiving end of it.
Lance had only great things to say about his experience in Arkansas and the state of his immune system post-transplant, which is something I've been modestly curious about since KG of the MMRF had told me her immune system was never the same. Lance used to have allergies and no longer does, is almost never sick, and was informed by BB that once somebody has beaten MM on the Arkansas protocol, their life expectancy is actually LONGER than the average person at large because the immune system has been reset so effectively. BB told Lance he has seen hypertension go away, all sorts of other immunodeficiency problems go away, etc. The fact that people are being checked frequently for three years is also a factor, I'm sure.
In all, a great day...but I am bushed and back to bed now. Looking forward to a visit from my friend Geoff tomorrow, while Jill will get to pop back to LA to see the kiddies. Geoff, I hope I have the stamina to get off the couch while you are here!
Got my stem cells today. 7.9 million of them, versus 3.9 million last time. This leaves me with about 17 million more -- enough for three transplants or so, not that I'll think I'll ever need them. I asked about them giving me more in an effort to speed engraftment but they said it makes no difference. They usually give more the second time, and anything beyond that is just kinda picking out a bag and seeing how many cells are in it (I got two bags). I compared this to going to the grocer and wanting 1.5 pounds of good quality tuna steak and seeing how many filets of different sizes it takes to get to the right total weight. There was at least dim recognition in the eyes of the nurse so I gather the metaphor translated.
My kidneys are not doing a good job of retaining Potassium, so the two infusers I had yesterday must be repeated. They also gave me a pill (Spironolactone) that is supposed to encourage the kidneys to retain potassium rather than pee it all away, so I'll add back one more pill to the (thankfully) dwindling regimen. I'm down to the antifungal, antiviral, antibiotic, antiflu and now anti-peeing-out-potassium.
After the transplant, my heart rate was 120 and my blood pressure was around 165 over 97. They kept me for a couple of hours to monitor this, but at the end of the day it's all the damn fluid retension from the Dex. I'm up FIFTEEN POUNDS in five days. Ugh. Soon, I'll be peeing all this out but in the meantime my ankles are so swollen it hurts to wear shoes and I can barely move around. I feel like the guy at the end of the Monty Python sketch where he's eaten too much and is swelling to the point of bursting. Or, rather, one of the Thunders from Big Trouble in Little China who just expands until he explodes.
Yeah...THIS guy:
Anyhow, hopefully that is temporary.
Other than the potassium, the transitory high blood pressure, and the utter exhaustion, I feel pretty good, all things considered. For those interested in poop, I'll be discontinuing the Senna -- bracing myself for diarrhea at this point. I have to say, I went back and read all that stuff I wrote while I was doped up on Dilaudid and it's pretty damn funny but I'm not sure I'm going to have too many more Merciless Turds from Outer Space stories on here, so those yucks may be behind us. I'll have to find more fertile ground for humor. It's getting harder, though...people here are so nice and devoted to my care that it's not that easy to mock them relentlessly. :)
On the subject of sweet sentiment, we were treated to a very nice moment today. I was wearing a shirt given to me by the good people at PinnacleCare that reads "Cancer Sucks." Seemed like an appropriate "stick it to the man" type thing to wear on such an auspicious day as my second stem cell transplant. Jill and I went out to lunch at an upscale burger joint called Cheers, since I still have white cells and soon I'll be under bubble-boy lockdown in the apartment so we're enjoying the ability to go out when we can. We had finished our lunch when we were told that a nice young couple with their young son sitting outside had paid our tab.
We went out and spoke with this lovely couple from Chicago for about 20 minutes. Lance had been treated here for Myeloma, after diagnosis in his early 30s. He began treatment elsewhere and it didn't take, so he came here and went off protocol, did SuperBeam plus some very strong Velcade therapy, but it wiped out the Myeloma. He and his wife were dining once and had their tab paid for by others under similar circumstances and decided to keep the good will / karmic wheel rolling. Jill and I were very, very touched and will keep this in mind -- sooner or later there'll be a similar opportunity. I thought back to when I gave the guy that cut my hair some money to pay for a child that couldn't afford it...that time of thing is a small gesture but very meaningful when you are on the receiving end of it.
Lance had only great things to say about his experience in Arkansas and the state of his immune system post-transplant, which is something I've been modestly curious about since KG of the MMRF had told me her immune system was never the same. Lance used to have allergies and no longer does, is almost never sick, and was informed by BB that once somebody has beaten MM on the Arkansas protocol, their life expectancy is actually LONGER than the average person at large because the immune system has been reset so effectively. BB told Lance he has seen hypertension go away, all sorts of other immunodeficiency problems go away, etc. The fact that people are being checked frequently for three years is also a factor, I'm sure.
In all, a great day...but I am bushed and back to bed now. Looking forward to a visit from my friend Geoff tomorrow, while Jill will get to pop back to LA to see the kiddies. Geoff, I hope I have the stamina to get off the couch while you are here!
Tuesday, May 26, 2009
Transplant B, Day -1
Back from the final round of Melphalan, and the last dose of Dex for this go-round (thank God, as I'm bloated and up 11 pounds and it's doing everything from making my eyes unable to focus to making my ankles too big for my pants) and so with the exception of the Thalidomide this evening, that will be the last of the poison for round three of chemo. Hurray!
I have minimal side effects other than exhaustion -- I feel like I've been hit by a bus. That's to be expected. Red blood counts fell to 11.1 and I hope they don't go any lower -- I got used to them being up around 13.5 and it felt good in that range. Whites are hanging on in the 7.X range, and platelets are at 159. So no crash yet from the chemo, but we know it's coming.
Potassium dropped below the low-end of normal (3.5) to 3.2, so they put me on two of those infusers, but otherwise it was an uneventful trip to the 7th floor. I got my second and final dose of Velcade this time around, which I was warned could cause constipation, so I'm going to add back the second daily Senna pill that I just yesterday removed from my regimen. I note from my previous posts that the GI tract gave way pretty nastily on day +4, so I was hoping to wean myself off that, but the tightrope walk between constipation and its converse is a tough one to tread.
The Lovinox hurt, but it's the last one, so that's that.
Now I'm going to crash, much like the Lakers did in last night's debacle against Denver.
ADDENDUM: Some of my friends get a kick out of following the more low-brow elements of my fight, so to you guys (and you know who you are) I am carrying around another jug of urine, to be deposited at the lab tomorrow. Hope this makes you happy.
I have minimal side effects other than exhaustion -- I feel like I've been hit by a bus. That's to be expected. Red blood counts fell to 11.1 and I hope they don't go any lower -- I got used to them being up around 13.5 and it felt good in that range. Whites are hanging on in the 7.X range, and platelets are at 159. So no crash yet from the chemo, but we know it's coming.
Potassium dropped below the low-end of normal (3.5) to 3.2, so they put me on two of those infusers, but otherwise it was an uneventful trip to the 7th floor. I got my second and final dose of Velcade this time around, which I was warned could cause constipation, so I'm going to add back the second daily Senna pill that I just yesterday removed from my regimen. I note from my previous posts that the GI tract gave way pretty nastily on day +4, so I was hoping to wean myself off that, but the tightrope walk between constipation and its converse is a tough one to tread.
The Lovinox hurt, but it's the last one, so that's that.
Now I'm going to crash, much like the Lakers did in last night's debacle against Denver.
ADDENDUM: Some of my friends get a kick out of following the more low-brow elements of my fight, so to you guys (and you know who you are) I am carrying around another jug of urine, to be deposited at the lab tomorrow. Hope this makes you happy.
Monday, May 25, 2009
Transplant B, Day -2: Connectivity and Synchronicity
First, the mundane. White counts continue to climb (8.4 today) as is expected -- the climb before the crash. Red counts basically stable from yesterday (down a hair but not too much). Platelets holding firm at 169, but will be coming down soon. Mustard gas administered without issue, good pre-meds for the nausea are holding it in check. Haven't gone on the Zofran to augment them, although I do take an Ativan at night to help combat the effects of the Dex which would otherwise keep me awake.
All my electrolytes are in good shape, creatinine still low, and liver numbers are beginning to settle down, which is welcome news. A lot of these numbers are going to bounce around during chemo so I don't worry about them too much, although I want to make sure the creatinine is on the low end as that ensures good kidney function.
Speaking of which, my kidneys are slowing down due to the Dex. I've put on ten pounds from the dex in three days and urine output has been cut dramatically. This will all be gone in a week but I feel a kinship for every menstruating female out there -- bloating isn't all it's cracked up to be.
Lastly on the medical front, the nurse was VERY good with the Lovinox injection today. Almost made up for yesterday's painful shot.
Now, on the connectivity front, I shared the semi-private room today with a lovely couple from Branson, Missouri. The gentleman was about 12 days post-second transplant and he looked great. It's nice to see somebody else doing well from the treatment. He's 50 and is on the standard arm, which meant he didn't get the fractionated Melphalan (he gets one big dose in one day, versus my smaller doses for four) and he had two cycles of conslidation up-front, and he got some complications from Deep Vein Thrombosis (perhaps hearing of his travails made my prophylactic Lovinox shot go in easier). But otherwise he's doing very well. He asked where we were from, and I mentioned Los Angeles, and he knew of this blog. So hello there, fellow traveler!
I've read that it is therapeutic just to journal one's observations, and I've found it both a good cathartic release as well as a means of keeping friends and family up-to-date, and also I've found it useful as a personal reference guide to plan what's going to happen with this upcoming transplant relative to the last one (for example, eliminating Docusan and using only Senna to combat the constipation effects of Thalidomide). But the blog is more than that -- it's a way of connecting with a support group that has at its core family and close life-long friends but has expanded to include fellow travelers from around the world, some of whom are in Arkansas being treated right now partially due to reading my blog, which is wonderfully rewarding. Above all, as I have written before, my blog followers are a tangible, meaningful part of my support for getting through this disease. Not a day goes by when I don't appreciate all of you -- some post, some pray, some offer good vibes, some do all of the above -- and every bit of it is meaningful to me and to beating this disease. I love you guys!
I'm feeling pretty good, although very tired. We had an 8AM appointment (due to the holiday they wanted to front-load everybody so they could take time off) and we were back at the apartment by 10:30. I promptly slept until 2PM.
More to come tomorrow. Enjoy the rest of your Memorial Day!
All my electrolytes are in good shape, creatinine still low, and liver numbers are beginning to settle down, which is welcome news. A lot of these numbers are going to bounce around during chemo so I don't worry about them too much, although I want to make sure the creatinine is on the low end as that ensures good kidney function.
Speaking of which, my kidneys are slowing down due to the Dex. I've put on ten pounds from the dex in three days and urine output has been cut dramatically. This will all be gone in a week but I feel a kinship for every menstruating female out there -- bloating isn't all it's cracked up to be.
Lastly on the medical front, the nurse was VERY good with the Lovinox injection today. Almost made up for yesterday's painful shot.
Now, on the connectivity front, I shared the semi-private room today with a lovely couple from Branson, Missouri. The gentleman was about 12 days post-second transplant and he looked great. It's nice to see somebody else doing well from the treatment. He's 50 and is on the standard arm, which meant he didn't get the fractionated Melphalan (he gets one big dose in one day, versus my smaller doses for four) and he had two cycles of conslidation up-front, and he got some complications from Deep Vein Thrombosis (perhaps hearing of his travails made my prophylactic Lovinox shot go in easier). But otherwise he's doing very well. He asked where we were from, and I mentioned Los Angeles, and he knew of this blog. So hello there, fellow traveler!
I've read that it is therapeutic just to journal one's observations, and I've found it both a good cathartic release as well as a means of keeping friends and family up-to-date, and also I've found it useful as a personal reference guide to plan what's going to happen with this upcoming transplant relative to the last one (for example, eliminating Docusan and using only Senna to combat the constipation effects of Thalidomide). But the blog is more than that -- it's a way of connecting with a support group that has at its core family and close life-long friends but has expanded to include fellow travelers from around the world, some of whom are in Arkansas being treated right now partially due to reading my blog, which is wonderfully rewarding. Above all, as I have written before, my blog followers are a tangible, meaningful part of my support for getting through this disease. Not a day goes by when I don't appreciate all of you -- some post, some pray, some offer good vibes, some do all of the above -- and every bit of it is meaningful to me and to beating this disease. I love you guys!
I'm feeling pretty good, although very tired. We had an 8AM appointment (due to the holiday they wanted to front-load everybody so they could take time off) and we were back at the apartment by 10:30. I promptly slept until 2PM.
More to come tomorrow. Enjoy the rest of your Memorial Day!
Sunday, May 24, 2009
Transplant B, Day -3
Uneventful morning. Cold is better, cough almost gone. WBC back up to normal range (6.7) and platelets at 160, which is on the low end of normal, but normal nonetheless. Red blood counts slipping, which is unfortunate as I was hoping to keep them nice and high to keep my energy up. Hemoglobin was 12.6 yesterday and is 11.3 today. : ( If I can keep it above 11, I'll still feel myself, at least. Even above 10 would be good. We'll see what happens.
CRP is down to 6.8 from 9.8, which is good as well. Also, phosphorus went way up back into the normal range. So, essentially, other than my red blood counts everything is normal heading into this. Good good, as my friend Bill Block would say.
I reviewed my pill regimen from the first transplant and I noted that I took senna and docusan both twice a day to ensure regularity while on Thalidomide. I don't think I needed all that, so I'm going to drop it to just the senna and see what happens. Otherwise, I'm maintaining the full complement of everything from last time. I won't go on the Zofran until I need it; right now the Kytril and Emend are working well enough. It was day 3, I think, of the 4 Melphalan administrations last time that started to overwhelm that, so we'll see what happens.
I'm sluggish, and I noticed this morning with my cereal that my taste buds are gone again. It had been probably a week or so since I lost all trace of that horrible vitamin C taste in the back on my mouth. That hasn't come back yet, but there's a marked reduction in the flavor of food. This is fine...if those cells are dying, the cancer cells are dying, too.
Notably, my hair is coming back in. I spoke with Bonnie and she seemed to affirm my observation that the Melphalan didn't cause the hair to fall out -- it was the PACE chemo that did it. It's funny -- in the non-fractionated version of the Melphalan (meaning 200 mg/m2 over one day rather than 4 days of 50 mg/m2) both SF and SH assured me hair loss would occur. Meanwhile my beard has come in pretty full and my scalp is darkening again, and what was stubble is now 1/4 long in many places (or even longer in the case of one 1/2" gray hair that is gonna get tweezed if it steps outta line). It's coming in straight and dark brown, as well, which is good to see.
Now my question vis-a-vis hair is, if the fractionated Melphalan doesn't knock it out, will the dose-reduced PACE in consolidation do it? It would be terrific to have my full hair of hair back in August rather than October! How nice to spend even a moment worried about such trivial things.
I'm looking forward to seeing the next set of tumor markes. I'm not sure the Melphalan will have had time to act by tomorrow, which is when they usually run those labs. The next lab run would probably be Thursday, with results coming on Saturday or Sunday. That magical number will be the M-spike...which hopefully will be gone completely.
It's pouring rain here -- time for a catnap. I hope you and your families and friends are enjoying the long weekend!
EVENING ADDENDUM:
Taste buds almost completely gone, stomach ache as well. That means the whole GI tract is going, as it is expected to. That also means the cancer cells are dying! The nurse today was quite nice but she wasn't very good at the Lovenox shot...she went straight into the belly instead of at an angle and she didn't pinch the skin very well -- most of the time I just grimace or hiss quietly as the needle goes in -- this time I yelled "OWWW!" and couldn't help myself. :)
Had spicy Indian food tonight -- last time for a few weeks I will dare try that. And lastly, it's gonna be back to that rotten mouthwash several times a day and night. Just took all my pills and it's off to a fitful sleep...
Have a great Memorial Day everybody!
CRP is down to 6.8 from 9.8, which is good as well. Also, phosphorus went way up back into the normal range. So, essentially, other than my red blood counts everything is normal heading into this. Good good, as my friend Bill Block would say.
I reviewed my pill regimen from the first transplant and I noted that I took senna and docusan both twice a day to ensure regularity while on Thalidomide. I don't think I needed all that, so I'm going to drop it to just the senna and see what happens. Otherwise, I'm maintaining the full complement of everything from last time. I won't go on the Zofran until I need it; right now the Kytril and Emend are working well enough. It was day 3, I think, of the 4 Melphalan administrations last time that started to overwhelm that, so we'll see what happens.
I'm sluggish, and I noticed this morning with my cereal that my taste buds are gone again. It had been probably a week or so since I lost all trace of that horrible vitamin C taste in the back on my mouth. That hasn't come back yet, but there's a marked reduction in the flavor of food. This is fine...if those cells are dying, the cancer cells are dying, too.
Notably, my hair is coming back in. I spoke with Bonnie and she seemed to affirm my observation that the Melphalan didn't cause the hair to fall out -- it was the PACE chemo that did it. It's funny -- in the non-fractionated version of the Melphalan (meaning 200 mg/m2 over one day rather than 4 days of 50 mg/m2) both SF and SH assured me hair loss would occur. Meanwhile my beard has come in pretty full and my scalp is darkening again, and what was stubble is now 1/4 long in many places (or even longer in the case of one 1/2" gray hair that is gonna get tweezed if it steps outta line). It's coming in straight and dark brown, as well, which is good to see.
Now my question vis-a-vis hair is, if the fractionated Melphalan doesn't knock it out, will the dose-reduced PACE in consolidation do it? It would be terrific to have my full hair of hair back in August rather than October! How nice to spend even a moment worried about such trivial things.
I'm looking forward to seeing the next set of tumor markes. I'm not sure the Melphalan will have had time to act by tomorrow, which is when they usually run those labs. The next lab run would probably be Thursday, with results coming on Saturday or Sunday. That magical number will be the M-spike...which hopefully will be gone completely.
It's pouring rain here -- time for a catnap. I hope you and your families and friends are enjoying the long weekend!
EVENING ADDENDUM:
Taste buds almost completely gone, stomach ache as well. That means the whole GI tract is going, as it is expected to. That also means the cancer cells are dying! The nurse today was quite nice but she wasn't very good at the Lovenox shot...she went straight into the belly instead of at an angle and she didn't pinch the skin very well -- most of the time I just grimace or hiss quietly as the needle goes in -- this time I yelled "OWWW!" and couldn't help myself. :)
Had spicy Indian food tonight -- last time for a few weeks I will dare try that. And lastly, it's gonna be back to that rotten mouthwash several times a day and night. Just took all my pills and it's off to a fitful sleep...
Have a great Memorial Day everybody!
Saturday, May 23, 2009
Is the Opera over? Because we saw Heart perform tonight...
...and Ann Wilson was singing up a storm. [ba-dum dum]
There is a weekend music, food and...err....possum? belt buckle? moonshine?...festival this week. It's on the river here. A festival on the river. Care to guess the name?
So we bought tickets to the Riverfest yesterday because there were some interesting nostalgia bands playing (the B52s, Heart, etc.) and tickets were $12.50 for THE WEEKEND. Last night we saw three songs of the B52s -- enough to see that the short woman had gained about 150 pounds but was still gamely capering around, while the tall woman was unable to move. Only the weird Fred guy was his old (and I mean old) self, prancing around and blowing on a slide whistle on one song. That was about all I could take.
I let Jill drag me to the other big stage near the Clinton library to see Willie Nelson. Willie, unlike the B52s, looked exactly like I remember him in the 1980s. Which is to say, impossibly old, frail, and smelly. But the audience was very much into it. I felt like calling out for him to perform a little known Manowar* song (like Bridge of Death, or Blood of My Enemies) but there are only two people reading this blog that will chuckle at the brilliant irony of that, and there certainly would have been nobody at the Willie Nelson show that would have understood or laughed. Blood of My Enemies could have been construed as a country song about the ay-rabs, though. In fact, I can see it now...Nick screams "play Blood of My Enemies" and some huge redneck in bib overalls turning around and saying "you dumbass, that's a Toby Keith song!" or something.
Anyhow, tonight Heart performed and I have to admit, they were awesome for the four songs we saw after the Lakers game ended (go Lakers!). They did a very good cover of The Who's Love Reign O'er Me (one of my favorite songs). Although from the looks of Ann Wilson, deep dish pizza has been reigning o'er her for some time now. Still, her voice was amazing.
I looked around and realized this is probably the last outing of this sort I'll be going on for a month -- I could almost see a thick halo of germs swarming around every drunk, unclean and/or smoking person there...which is to say about 98% of the people including security. They'd had about 12 hours to get to whatever state they were in by 11PM, so good for them, but it's no place for somebody whose immune system is about to fail. I went home and practically took a bath in the antiseptic handwash I have.
So...like a movie with too much exposition before the opening credits, here at last is the medical meat of this blog entry.
I took my 10 little dexamethasone pills this morning, and went back to the 7th floor at 9AM to run the gauntlet again. Labs were drawn, and some weird things were observed. White blood cells were low -- 2.7 -- but I was told this is because I started the Levaquin. Phosphorus, of all things, was low, and I was given a list of foods to eat. Uric Acid is a bit high, not sure what that is from. CRP needed to be below 10 to proceed with the Melphalan and it was 9.8...which is about what I expected given the cold that is still lingering but as I write this almost done. Red blood counts are holding steading -- still slightly anemic but a lot better than before.
The Melphalan went down without a hitch. I got my Kytril and Emend for nausea, which as of the time of this writing are fine. I did NOT get Zofran / Ragalin this time...and reading up on Zofran there are some side effects that can elevate liver tests, so I wonder if that's what did it? We shall see. There seem to be a lot of medicines that are doing that. So I will stick to my "if I don't need it, I won't take it" program. I got Zofran in the hospital and my liver numbers were fine...oh well, we'll figure it all out.
I also got a shot of Lovanox in my belly again, which was tolerable but not something I want to repeat. Sadly I need to do so 3-4 more times. So far, I'm sluggish but otherwise feel good. Three more days of this, and I'll have hopefully dealt the death blow to the cancer.
Pill rundown:
Levaquin (antibiotic, 1/day)
Acyclovir (antiviral, 2/day)
Tamiflu (antiflu, Swine and other, 1/day)
MetaNX (buncha prescription-form B vitamins as a prophylactic for neuropathy, 2/day)
Thalidomide (poison, 2 100-mg pills each night)
Protonix/Pantoprozole (ameliorates heartburn associated with all this other stuff plus the chemo)
Kytril (antinausea, 1/day)
Emend (antinausea, 1/day)
Atavan (required to combat dex to let me sleep, 1/day)
Senna (as needed to make sure I don't get the abdominal cramping problem, 1/day based on last transplant experience)
Fluconazole (antifungal, 1/day, they put me back on it)
Amazing there's room for food with all that, but there still is, at least until the chemo clobbers my appetite (which would be fine as I'm back up to 177 pounds which is about 12 more than I want to be carrying around). So since we needed to eat, I went to do another thing I won't be able to do for the next two weeks -- sushi! We found a very, very good place called Igibon. Shockingly fresh fish, and about half the price of what a similar place in LA would be. Something to like about Little Rock!
Well, it was a full day, given that I got the liquid mustard gas this morning. I expect the next few days will be progressively less full, until about a week from now when I will probably crash outright -- but I'm hoping the elevated red counts will enable me to have a little energy even then.
That's all the news that's fit to print and then some. Good night all!
-----
*Manowar is a very obscure heavy metal band that dresses up like vikings, who take themselves wayyyy too seriously, and who had a number of decent albums in the mid 1980s but who are now widely considered a joke in the US even though they continue to be worshipped in Europe. Spinal Tap has nothing on these guys -- one of them accidentally struck the singer with a not-so-fake sword on stage in the 1980s and they had to stop the show to get the guy to a hospital. It may not be a drummer exploding spontaneously like Tap...but then it really happened.
There is a weekend music, food and...err....possum? belt buckle? moonshine?...festival this week. It's on the river here. A festival on the river. Care to guess the name?
So we bought tickets to the Riverfest yesterday because there were some interesting nostalgia bands playing (the B52s, Heart, etc.) and tickets were $12.50 for THE WEEKEND. Last night we saw three songs of the B52s -- enough to see that the short woman had gained about 150 pounds but was still gamely capering around, while the tall woman was unable to move. Only the weird Fred guy was his old (and I mean old) self, prancing around and blowing on a slide whistle on one song. That was about all I could take.
I let Jill drag me to the other big stage near the Clinton library to see Willie Nelson. Willie, unlike the B52s, looked exactly like I remember him in the 1980s. Which is to say, impossibly old, frail, and smelly. But the audience was very much into it. I felt like calling out for him to perform a little known Manowar* song (like Bridge of Death, or Blood of My Enemies) but there are only two people reading this blog that will chuckle at the brilliant irony of that, and there certainly would have been nobody at the Willie Nelson show that would have understood or laughed. Blood of My Enemies could have been construed as a country song about the ay-rabs, though. In fact, I can see it now...Nick screams "play Blood of My Enemies" and some huge redneck in bib overalls turning around and saying "you dumbass, that's a Toby Keith song!" or something.
Anyhow, tonight Heart performed and I have to admit, they were awesome for the four songs we saw after the Lakers game ended (go Lakers!). They did a very good cover of The Who's Love Reign O'er Me (one of my favorite songs). Although from the looks of Ann Wilson, deep dish pizza has been reigning o'er her for some time now. Still, her voice was amazing.
I looked around and realized this is probably the last outing of this sort I'll be going on for a month -- I could almost see a thick halo of germs swarming around every drunk, unclean and/or smoking person there...which is to say about 98% of the people including security. They'd had about 12 hours to get to whatever state they were in by 11PM, so good for them, but it's no place for somebody whose immune system is about to fail. I went home and practically took a bath in the antiseptic handwash I have.
So...like a movie with too much exposition before the opening credits, here at last is the medical meat of this blog entry.
I took my 10 little dexamethasone pills this morning, and went back to the 7th floor at 9AM to run the gauntlet again. Labs were drawn, and some weird things were observed. White blood cells were low -- 2.7 -- but I was told this is because I started the Levaquin. Phosphorus, of all things, was low, and I was given a list of foods to eat. Uric Acid is a bit high, not sure what that is from. CRP needed to be below 10 to proceed with the Melphalan and it was 9.8...which is about what I expected given the cold that is still lingering but as I write this almost done. Red blood counts are holding steading -- still slightly anemic but a lot better than before.
The Melphalan went down without a hitch. I got my Kytril and Emend for nausea, which as of the time of this writing are fine. I did NOT get Zofran / Ragalin this time...and reading up on Zofran there are some side effects that can elevate liver tests, so I wonder if that's what did it? We shall see. There seem to be a lot of medicines that are doing that. So I will stick to my "if I don't need it, I won't take it" program. I got Zofran in the hospital and my liver numbers were fine...oh well, we'll figure it all out.
I also got a shot of Lovanox in my belly again, which was tolerable but not something I want to repeat. Sadly I need to do so 3-4 more times. So far, I'm sluggish but otherwise feel good. Three more days of this, and I'll have hopefully dealt the death blow to the cancer.
Pill rundown:
Levaquin (antibiotic, 1/day)
Acyclovir (antiviral, 2/day)
Tamiflu (antiflu, Swine and other, 1/day)
MetaNX (buncha prescription-form B vitamins as a prophylactic for neuropathy, 2/day)
Thalidomide (poison, 2 100-mg pills each night)
Protonix/Pantoprozole (ameliorates heartburn associated with all this other stuff plus the chemo)
Kytril (antinausea, 1/day)
Emend (antinausea, 1/day)
Atavan (required to combat dex to let me sleep, 1/day)
Senna (as needed to make sure I don't get the abdominal cramping problem, 1/day based on last transplant experience)
Fluconazole (antifungal, 1/day, they put me back on it)
Amazing there's room for food with all that, but there still is, at least until the chemo clobbers my appetite (which would be fine as I'm back up to 177 pounds which is about 12 more than I want to be carrying around). So since we needed to eat, I went to do another thing I won't be able to do for the next two weeks -- sushi! We found a very, very good place called Igibon. Shockingly fresh fish, and about half the price of what a similar place in LA would be. Something to like about Little Rock!
Well, it was a full day, given that I got the liquid mustard gas this morning. I expect the next few days will be progressively less full, until about a week from now when I will probably crash outright -- but I'm hoping the elevated red counts will enable me to have a little energy even then.
That's all the news that's fit to print and then some. Good night all!
-----
*Manowar is a very obscure heavy metal band that dresses up like vikings, who take themselves wayyyy too seriously, and who had a number of decent albums in the mid 1980s but who are now widely considered a joke in the US even though they continue to be worshipped in Europe. Spinal Tap has nothing on these guys -- one of them accidentally struck the singer with a not-so-fake sword on stage in the 1980s and they had to stop the show to get the guy to a hospital. It may not be a drummer exploding spontaneously like Tap...but then it really happened.
Friday, May 22, 2009
Well, I *thought* that was going to be my last post of the day...
...but I have to give a "shout out" to Dr. SF, who would have been my primary stem cell transplant guy had I stayed in LA for this, and who will be the person who is in charge of my maintenance therapy for the next three years once I finish up here.
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
A final brief story before round #3 of Chemo...
This technically took place yesterday, but it deserves its own entry.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
Plasma cells and bone marrow on the day before the next transplant begins...
We went to the clinic yesterday to review all my tests and to discuss timing of beginning transplant #2, which I wanted to begin as soon as possible while at the same time being mindful of my bad cold, which had almost departed my sinuses but which was still alive and kicking in my chest. I don't want my immune system being wiped out just in time to let a little bronchial cold turn into pneumonia and a hospital visit again.
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
Thursday, May 21, 2009
Notes from Ground Zero of pop culture
Yes, I do mean Little Rock.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Tuesday, May 19, 2009
48 hours, from the ridiculous to the sublime to the grueling...
Yesterday started off very early. I was a little anxious about coming back here and diving back into things, to say nothing of bidding farewell to my kids for another month, so I didn't sleep very well on Sunday night. Bleary eyed, we headed to the airport Monday morning for a 6:35 flight.
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
Monday, May 18, 2009
Back to the grind...
Well folks, it has been a wonderful couple of weeks, treatment free (especially after being pulled of the Thalidomide), back at home with the kids, seeing a very few friends and feeling mostly normal. However, cancer waits for no man and so we are departing for the airport at the ungodly hour of 5AM for our return to Little Rock.
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
Friday, May 15, 2009
Another lab update and more good news...
It's funny...I've become so accustomed to getting daily labs from BB's clinic that it's an almost unimaginable wait to have my blood drawn on Monday the 11th and not have the information until Friday the 15th! And yet, that was the case for a lot of my data.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
Thursday, May 14, 2009
Thanksgiving in May
Just a quick little note here...I started this blog after Thanksgiving, and with any luck, by this Thanksgiving the posts will be irregular. I won't necessarily have the opportunity to tie Thanksgiving, the holiday, to the feelings I have for those who follow this blog -- especially those who are kind enough to call, email, post, etc., some of whom have even tolerated my inability to call back right away, etc.
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
Rotten little kids...or "I'm an idiot."
So what's the one thing that could drop a turd in the ol' punchbowl, as they say, of my progress?
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Monday, May 11, 2009
Numbers update...
I've been getting my blood drawn once a week (hard to adjust to not having daily counts, but I'm managing!) at Dr. SH's place, where this journey began back in November. It's funny to think how much I now know about this disease, and my treatment, and how far advanced BB's protocol is relative to the historically standard course of action...
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
Thursday, May 7, 2009
A minor update, in which your humble narrator suffers from a myriad of minor ailments...
Just a few odds and ends here. First up: the Thalidomide caused an allergic reaction on my face. It's not too bad to look at (I just look tan) but it itches quite a bit. Thankfully they have pulled me off Thalidomide for a week to see if it goes away, which is fine by me as I hate that stuff. I took it for six days, four of them with Dex, and that should be enough to keep the cancer suppressed for another couple of weeks until my next transplant.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
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