So Jill and I were getting a bit stir crazy around here and we decided to go away for a couple of days to a nearby city...we'll call it Schmemphis to protect those that live there.
We'd been there once before and I actually liked it. I find this curious now, considering I wasn't on any serious drugs at the time. Perhaps the ongoing economic downturn has really taken a toll over the last six months...or perhaps I am now subconsciously aware that Schmemphis is the violent crime capital of the United States...but whatever the reason, I can now charitably describe Schmemphis as an absolute pit.
On a goof, we drove by...uh...Schmaceland just to see what the fuss was about. Every stereotype of the people that make pilgrimages to this place appears to be true -- albeit from the window of a passing car about 100 yards away.
As Jill said, "if that guy hadn't died on a toilet here, there wouldn't even be a city." Hard to argue the point. Although we did have a very nice dinner last night.
Of note, there were many headlines about a decade ago about the West Schmemphis Three, some adolescents accused of a murder. Having driven through West Schmemphis now, I can say without a doubt that they are innocent. Any and all unnatural deaths in West Schmemphis must be the result of suicide given the absolute despair that must set it if one lives there.
Observed on the road between our current digs and Schmemphis: a large (VERY large) billboard saying "USE THE ROD ON YOUR CHILDREN AND SAVE THEIR LIVES!!!!!" with the appropriate Biblical citation beneath it.
That's right, people! Beat your kids senseless and knock 'em straight into heaven!
Jesus is rolling His eyes.
We plan on having dinner this evening with BB and his lovely wife so I will hopefully have something a bit more upbeat to report!
Sunday, July 12, 2009
Friday, July 10, 2009
A chip in the Chinese Wall...and other stories...
So yesterday was the Fine Needle Aspiration of the tumor deep in my right hip, along with ANOTHER bone marrow biopsy (which I had hoped could be done with the same hole but no, of course not, it wound up being in my left hip, which now means my butt is killing me no matter how I try to sit down).
I went to the hospital at 7AM for an 8AM procedure, ready for bear. At the slightest indication that they weren't going to properly anesthetize me, I was going to get up and walk out. I was taken back into pre-op, where I put on a fetching gown opening at the back, and laid down on the gurney. I spoke with the admitting nurse and she indicated that I was going to be given sedation, and I made sure that it was Propofol in addition to Versed, and she said that was the case. So far, so good.
So now, I waited for what seemed likely to be an inevitable and perhaps poetic reunion with Dr. CAH (not his real name or initials), who some readers may recall was thoughtful enough to interject his personal religious observations in a conversation before beginning a surgical procedure on me. The door cracked open and I was ready to greet him with a smile and hope that he'd forgotten the whole incident.
Instead, a very nice young lady came in and after asking me my name, introduced herself as a secretary. She said she had been doing some research...and asked if I wrote a blog.
Gulp.
"Yes, I do write a blog...and come to think of it I had some less than pleasant things to say about Dr. RVH so I'm sorry -- "
Fortunately, she cut me off and said it was no problem, that she enjoyed reading the blog and found it helpful, and that she was reading it on the down-low. All good news. :) If you're reading this right now, HELLO and congratulations again on your engagement!
Anyhow, with that near-scare out of the way, the usual parade of anesthesiologists, nurses and assistants came through, along with the doctor that would be performing the FNA, a nice woman whose name I have forgotten. CAH must have been out sprucing up the billboads between here and Schmemphis. Anyhow, she explained that the PET scan indicated there was no longer a lesion in the hip, and that there were no "hot spots" that she could read -- although the hastened to add that she isn't qualified to read a PET scan. She said there were several "warm spots" but nothing that looked like a full-blown focal lesion. She said the MRI indicated there was still a hole in the bone where the lesion used to be (I wondered to myself if this was from the previous FNA!) so she would still be taking marrow from that area. This seemed fine to me as BB clearly wanted to monitor the change in that one spot.
Obviously, the initial read of the PET scan is a positive, so I'm happy about that.
Anyhow, it all went as it should have. I got wheeled into the CT room, rolled off the comfortable stretcher on to an uncomfortable CT bed on my stomach, and fell asleep. I woke up in the recovery room, fairly groggy but not in much pain. After 30 minutes, we were ready to leave. The nurse offered me the choice of a Vicodin or a Percocet. Vicodin doesn't do anything for me (I'm resistant, I think, to opiates which is why it required the really nasty stuff to cut the pain when I was in the hospital back in March) so I went for the Percocet because I'd never had it before. It was like trying another flavor at Baskin Robbins, I suppose.
Anyhow it worked pretty well. We had lunch at our favorite Mexican place, and then went home to crash for a few hours. We had a pretty nice dinner and then bumped into BB at the restaurant in our condo lobby. He patted my belly a few times (HE's the one that put me on he Dex, dammit!) and gave Jill a hug. He commented that my hair was coming back, which it is -- although as I have remarked to a few people, I am one hockey mask away from being Jason Voorhees.
Anyhow, I asked BB if my hair was going to fall back out and he said "probably not."
That's good, I suppose...except of course it raises the question again of "am I getting enough poison?"
All in all, mixed signals, mostly good, I suppose -- PET scan shows the treatment is working, hair may stay (who cares in the grand scheme of things), hopefully next phase of treatment gets rid of the remaining Myeloma. We shall see.
In any case, the Chinese Wall has a crack in it. I'm counting on the nice secretary in Interventional Radiology to keep this between us! :)
I went to the hospital at 7AM for an 8AM procedure, ready for bear. At the slightest indication that they weren't going to properly anesthetize me, I was going to get up and walk out. I was taken back into pre-op, where I put on a fetching gown opening at the back, and laid down on the gurney. I spoke with the admitting nurse and she indicated that I was going to be given sedation, and I made sure that it was Propofol in addition to Versed, and she said that was the case. So far, so good.
So now, I waited for what seemed likely to be an inevitable and perhaps poetic reunion with Dr. CAH (not his real name or initials), who some readers may recall was thoughtful enough to interject his personal religious observations in a conversation before beginning a surgical procedure on me. The door cracked open and I was ready to greet him with a smile and hope that he'd forgotten the whole incident.
Instead, a very nice young lady came in and after asking me my name, introduced herself as a secretary. She said she had been doing some research...and asked if I wrote a blog.
Gulp.
"Yes, I do write a blog...and come to think of it I had some less than pleasant things to say about Dr. RVH so I'm sorry -- "
Fortunately, she cut me off and said it was no problem, that she enjoyed reading the blog and found it helpful, and that she was reading it on the down-low. All good news. :) If you're reading this right now, HELLO and congratulations again on your engagement!
Anyhow, with that near-scare out of the way, the usual parade of anesthesiologists, nurses and assistants came through, along with the doctor that would be performing the FNA, a nice woman whose name I have forgotten. CAH must have been out sprucing up the billboads between here and Schmemphis. Anyhow, she explained that the PET scan indicated there was no longer a lesion in the hip, and that there were no "hot spots" that she could read -- although the hastened to add that she isn't qualified to read a PET scan. She said there were several "warm spots" but nothing that looked like a full-blown focal lesion. She said the MRI indicated there was still a hole in the bone where the lesion used to be (I wondered to myself if this was from the previous FNA!) so she would still be taking marrow from that area. This seemed fine to me as BB clearly wanted to monitor the change in that one spot.
Obviously, the initial read of the PET scan is a positive, so I'm happy about that.
Anyhow, it all went as it should have. I got wheeled into the CT room, rolled off the comfortable stretcher on to an uncomfortable CT bed on my stomach, and fell asleep. I woke up in the recovery room, fairly groggy but not in much pain. After 30 minutes, we were ready to leave. The nurse offered me the choice of a Vicodin or a Percocet. Vicodin doesn't do anything for me (I'm resistant, I think, to opiates which is why it required the really nasty stuff to cut the pain when I was in the hospital back in March) so I went for the Percocet because I'd never had it before. It was like trying another flavor at Baskin Robbins, I suppose.
Anyhow it worked pretty well. We had lunch at our favorite Mexican place, and then went home to crash for a few hours. We had a pretty nice dinner and then bumped into BB at the restaurant in our condo lobby. He patted my belly a few times (HE's the one that put me on he Dex, dammit!) and gave Jill a hug. He commented that my hair was coming back, which it is -- although as I have remarked to a few people, I am one hockey mask away from being Jason Voorhees.
Anyhow, I asked BB if my hair was going to fall back out and he said "probably not."
That's good, I suppose...except of course it raises the question again of "am I getting enough poison?"
All in all, mixed signals, mostly good, I suppose -- PET scan shows the treatment is working, hair may stay (who cares in the grand scheme of things), hopefully next phase of treatment gets rid of the remaining Myeloma. We shall see.
In any case, the Chinese Wall has a crack in it. I'm counting on the nice secretary in Interventional Radiology to keep this between us! :)
Wednesday, July 8, 2009
Four hours in tubes, a conversation with SF and other stories...
So it was quite a day for tests. We picked up our packet of information at 11, went to get my blood drawn and my dressing changed where they still had my old orders from post-transplant (asking them to do peripheral sticks to run obscure anti-viral cultures that I don't need since I have an immune system again). I explained they didn't need to do that and they eventually go it.
Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?
Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.
Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)
After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.
Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.
I did speak briefly with Dr. SF this evening. Highlights:
* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.
* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.
* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.
* He agrees that the right questions for BB are the ones I have outlined.
So...there you have it. More news as it becomes available.
Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?
Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.
Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)
After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.
Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.
I did speak briefly with Dr. SF this evening. Highlights:
* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.
* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.
* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.
* He agrees that the right questions for BB are the ones I have outlined.
So...there you have it. More news as it becomes available.
Back in Little Rock with renewed resolve...
I returned to Little Rock yesterday afternoon following four weeks or so in Los Angeles. The culture shock was palpable.
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
Friday, July 3, 2009
Good enough for Michael Jackson...plus some questions
So it's all over the news. Michael Jackson was allegedly taking Propofol for insomnia, of all things. This is the drug that they damn well better be giving me before the FNA and the bone marrow next week. If I am lying on the gurney getting ready to be wheeled in to the interventional radiology room with that snake handling maniac doctor, and they aren't going to give me Propofol, I will get up and walk out, it's as simple as that.
Meanwhile, I've been compiling some questions for BB (some of which I will also ask SF, in the odd chance that I get the opportunity to speak with him before going back to Arkansas).
1. My understanding is that the success rate of getting people into complete remission using thalidomide and dex for several cycles is quite high; adding Velcade to the mix should make it even higher -- perhaps close to 100%. Should I not have undergone more induction and thus put myself into remission, or close to it, BEFORE the transplants? If not, why not? What is the rationale for doing the transplants BEFORE the best possible reaction from induction therapy is reached?
2. Since it is better to achieve CR than not (there can be no such thing as "event free survival" when I have an ongoing event), given that I responded to induction, with the benefit of hindsight would I not have fared better with a second cycle of induction? [This question is close to the first one but gets directly at the potential shortcoming of the Lite arm of TT4)
3. If I do achieve CR now, given that I've already had the transplants (versus having them after remission has been achieved), is my CR less quality than would have been the case? Other doctors have described the transplant as a means of eradicating any cells left over after induction has created remission. Obviously in Arkansas the transplants are used as part of active therapy, not consolidation. What is the biological benefit to this?
4. If I respond to consolidation but I do not yet reach complete remission, can I get a second cycle of consolidation? If not, why not?
5. Of those enrolled in TT3, how many achieved remission AFTER consolidation? And how is their event free survival rate and sustainability of remission relative to those who achieved CR BEFORE consolidation?
6. Of those enrolled in TT4, how many achieved CR in the lite branch versus the standard branch?
It's hard to imagine answers to these questions that would put me at ease, frankly. But BB is a confident person, to say the least. Listening to my initial consult with him again, it reminded me of why I went there. I asked him "what's the typical treatment plan for a recurrence" and his response was "the likelihood of recurrence is so small, we don't have a typical program."
So perhaps he can answer the questions above very clearly and confidently...we shall see.
I called SH's office to try to get my results of this past Tuesday's blood tests, but they are closed for the holiday. So I shall have to wait until Monday to find out if my M-spike stayed at 0.3. And then on Tuesday, it's back to Arkansas. More news as it becomes available.
Meanwhile, I've been compiling some questions for BB (some of which I will also ask SF, in the odd chance that I get the opportunity to speak with him before going back to Arkansas).
1. My understanding is that the success rate of getting people into complete remission using thalidomide and dex for several cycles is quite high; adding Velcade to the mix should make it even higher -- perhaps close to 100%. Should I not have undergone more induction and thus put myself into remission, or close to it, BEFORE the transplants? If not, why not? What is the rationale for doing the transplants BEFORE the best possible reaction from induction therapy is reached?
2. Since it is better to achieve CR than not (there can be no such thing as "event free survival" when I have an ongoing event), given that I responded to induction, with the benefit of hindsight would I not have fared better with a second cycle of induction? [This question is close to the first one but gets directly at the potential shortcoming of the Lite arm of TT4)
3. If I do achieve CR now, given that I've already had the transplants (versus having them after remission has been achieved), is my CR less quality than would have been the case? Other doctors have described the transplant as a means of eradicating any cells left over after induction has created remission. Obviously in Arkansas the transplants are used as part of active therapy, not consolidation. What is the biological benefit to this?
4. If I respond to consolidation but I do not yet reach complete remission, can I get a second cycle of consolidation? If not, why not?
5. Of those enrolled in TT3, how many achieved remission AFTER consolidation? And how is their event free survival rate and sustainability of remission relative to those who achieved CR BEFORE consolidation?
6. Of those enrolled in TT4, how many achieved CR in the lite branch versus the standard branch?
It's hard to imagine answers to these questions that would put me at ease, frankly. But BB is a confident person, to say the least. Listening to my initial consult with him again, it reminded me of why I went there. I asked him "what's the typical treatment plan for a recurrence" and his response was "the likelihood of recurrence is so small, we don't have a typical program."
So perhaps he can answer the questions above very clearly and confidently...we shall see.
I called SH's office to try to get my results of this past Tuesday's blood tests, but they are closed for the holiday. So I shall have to wait until Monday to find out if my M-spike stayed at 0.3. And then on Tuesday, it's back to Arkansas. More news as it becomes available.
Thursday, July 2, 2009
A number of updates...
Hello folks.
It's high time for an update, for a number of reasons...not the least of which is that the image of a poor possessed Linda Blair violently throwing up isn't the most welcoming thing to see on a webpage, so the addition of new material should cause it to scroll down a bit and not be quite as immediately off-putting.
First, I want to say a thing or two about me feeling sorry for myself. :)
The fact is, I *do* feel sorry for myself for reasons which we'll get to in a moment. But I also feel guilty about feeling sorry for myself. I know that I got a bum deal getting this disease, but I also know that many others -- including some that follow this blog -- have had this disease longer and/or in a more challenging manifestation than I do. So in feeling sorry for myself, I want to acknowledge that others have it even worse than I do. I haven't lost sight of that.
Nonetheless, my primary goal in this blog is to be accurate and honest -- I want those who haven't yet gone through what I've gone through to have my unvarnished feelings because if this blog is to be of service to anybody, honest and transparency are paramount. And the honest truth is, I am angry that I'm not in remission, and I'm very, very concerned.
I spent a couple of hours yesterday listening to my diagnosis conversation with SH, and to my first consult with BB (before my bone marrow had been done) and my second consult with him (after it had been done). Two comments they made contributed to my current feelings.
* SH noted that depending on the study, the simple combination of thalidomide and dex, which is what he would have put me on for induction, has achieved COMPLETE remission in 70% to 90% of the cases! It's funny now to hear him explain all these terms and medicines which were so foreign at the time, yet which are now second nature. Revlimid, Prednisone, Dex, Melphalan...they were all nonsense words at the time. But the point is...even WITHOUT Velcade I stood a 70% to 90% chance of COMPLETE remission, not this crappy "very good partial response" in which I find myself mired.
* BB noted that those who achieve CR in Total Therapy have a better long-term prognosis than those who do not.
I am pissed off that I am not in complete remission, and I believe that it could be because I randomized into the Lite protocol which has only one cycle of induction rather than two. I am concerned that I am going to be the proof point that the Lite protocol isn't as good as the standard protocol. And now it's too damn late to do anything about it. Other than perhaps ask for two rounds of consolidation...if that's not too late to make a difference.
I shared some of my feelings with Bonnie, BB's assistant. I asked her if I was going to rely on VRD (Velcade, Revlimid, and Dex) in maintenance to get me into CR, shouldn't I have been on this to get into remission, and THEN had the transplants...since this is what most doctors would do. She said that "[there is] not a need ever to have a remission before doing transplants. That isn’t logical scientifically. Have [BB] give you the words. If mvdtpace didn’t get you in the CR club than throwing VRD et al on the wound would not have been a better approach."
Well...maybe. Except that M-VDT-PACE, which I had, could have been repeated (as it is in the standard branch). A longer induction period would surely have gotten me closer to complete remission than was the case. One period of induction was enough to bring my M-protein down from around 8 to around 4. The first transplant took it from 4 to 0.7. What if a second cycle of induction, which would have been the norm in the Standard arm, had been administered and I went into the transplant with an M-spike of 2? For that matter, what if I'd had the more concentrated high-dose Melphalan?
What if? What if? What if?
So now, I'm concerned that I will not reach CR -- or that if I do, it will be as a result of maintenance therapy, and that I won't have received enough poison to keep the disease away.
Which brings me to my next semi-depressing observation. What should have been a hopeful presentation by Dr. KA (remember him?) to the Multiple Myeloma Research Foundation was instead depressing. KA showed a slide of a typical patient whose M-spike rapidly goes to zero, and then a new means of measuring myeloma activity which takes much longer to go away. Getting the M-spike to zero was discarded like it was a given. And here I am, unable to get there...much less achieve the more stringent definition of complete remission based on the new way of measuring the disease (which is more accurate than the immunofixation test).
KA did speak about several new types of drugs coming out, most of which I've written about here. Carfilzomib (next generation Velcade) has been shown to succeed where Velcade has failed. Similarly, Pomalidomide (next generation Revlimid) has been shown to succeed where Revlimid has failed. Heat shock proteins and HDAC inhibitors are two other classes of drugs that hold a lot of promise.
But I wasn't supposed to need any of that crap. I didn't come to Arkansas to get TREATED. I came to Arkansas to be CURED.
And that cure is looking more and more elusive.
I don't really know where to take it from here. I suppose there is still some chance that the M-spike could continue to fall, although I've now had four readings: 0.27, 0.29, 0.32 and 0.30. It's hard to be more consistent than that. I'm sure the consolidation treatment will take it down further. Whether or not it goes to zero from consolidation I'm not sure. If it does, then great, I suppose. If not, perhaps I'll get a second cycle of consolidation? Which I'm sure BB might try to resist since that would remove me and my precious data from his study. I would need to go "off protocol." But if that's what it takes, then I will insist on it.
I'm going to try to talk with Dr. SF about all of this before I return to BB's shop next week. I'm going to have a very frank and difficult conversation with BB, and I want to be armed with everything (i.e. the success rate of several cycles of VTD in induction, for example) before doing so. I also want to make sure my logic isn't flawed.
But I don't think it is.
Anyhow...more news as it becomes available. To those of you in the US, have a great 4th of July!
It's high time for an update, for a number of reasons...not the least of which is that the image of a poor possessed Linda Blair violently throwing up isn't the most welcoming thing to see on a webpage, so the addition of new material should cause it to scroll down a bit and not be quite as immediately off-putting.
First, I want to say a thing or two about me feeling sorry for myself. :)
The fact is, I *do* feel sorry for myself for reasons which we'll get to in a moment. But I also feel guilty about feeling sorry for myself. I know that I got a bum deal getting this disease, but I also know that many others -- including some that follow this blog -- have had this disease longer and/or in a more challenging manifestation than I do. So in feeling sorry for myself, I want to acknowledge that others have it even worse than I do. I haven't lost sight of that.
Nonetheless, my primary goal in this blog is to be accurate and honest -- I want those who haven't yet gone through what I've gone through to have my unvarnished feelings because if this blog is to be of service to anybody, honest and transparency are paramount. And the honest truth is, I am angry that I'm not in remission, and I'm very, very concerned.
I spent a couple of hours yesterday listening to my diagnosis conversation with SH, and to my first consult with BB (before my bone marrow had been done) and my second consult with him (after it had been done). Two comments they made contributed to my current feelings.
* SH noted that depending on the study, the simple combination of thalidomide and dex, which is what he would have put me on for induction, has achieved COMPLETE remission in 70% to 90% of the cases! It's funny now to hear him explain all these terms and medicines which were so foreign at the time, yet which are now second nature. Revlimid, Prednisone, Dex, Melphalan...they were all nonsense words at the time. But the point is...even WITHOUT Velcade I stood a 70% to 90% chance of COMPLETE remission, not this crappy "very good partial response" in which I find myself mired.
* BB noted that those who achieve CR in Total Therapy have a better long-term prognosis than those who do not.
I am pissed off that I am not in complete remission, and I believe that it could be because I randomized into the Lite protocol which has only one cycle of induction rather than two. I am concerned that I am going to be the proof point that the Lite protocol isn't as good as the standard protocol. And now it's too damn late to do anything about it. Other than perhaps ask for two rounds of consolidation...if that's not too late to make a difference.
I shared some of my feelings with Bonnie, BB's assistant. I asked her if I was going to rely on VRD (Velcade, Revlimid, and Dex) in maintenance to get me into CR, shouldn't I have been on this to get into remission, and THEN had the transplants...since this is what most doctors would do. She said that "[there is] not a need ever to have a remission before doing transplants. That isn’t logical scientifically. Have [BB] give you the words. If mvdtpace didn’t get you in the CR club than throwing VRD et al on the wound would not have been a better approach."
Well...maybe. Except that M-VDT-PACE, which I had, could have been repeated (as it is in the standard branch). A longer induction period would surely have gotten me closer to complete remission than was the case. One period of induction was enough to bring my M-protein down from around 8 to around 4. The first transplant took it from 4 to 0.7. What if a second cycle of induction, which would have been the norm in the Standard arm, had been administered and I went into the transplant with an M-spike of 2? For that matter, what if I'd had the more concentrated high-dose Melphalan?
What if? What if? What if?
So now, I'm concerned that I will not reach CR -- or that if I do, it will be as a result of maintenance therapy, and that I won't have received enough poison to keep the disease away.
Which brings me to my next semi-depressing observation. What should have been a hopeful presentation by Dr. KA (remember him?) to the Multiple Myeloma Research Foundation was instead depressing. KA showed a slide of a typical patient whose M-spike rapidly goes to zero, and then a new means of measuring myeloma activity which takes much longer to go away. Getting the M-spike to zero was discarded like it was a given. And here I am, unable to get there...much less achieve the more stringent definition of complete remission based on the new way of measuring the disease (which is more accurate than the immunofixation test).
KA did speak about several new types of drugs coming out, most of which I've written about here. Carfilzomib (next generation Velcade) has been shown to succeed where Velcade has failed. Similarly, Pomalidomide (next generation Revlimid) has been shown to succeed where Revlimid has failed. Heat shock proteins and HDAC inhibitors are two other classes of drugs that hold a lot of promise.
But I wasn't supposed to need any of that crap. I didn't come to Arkansas to get TREATED. I came to Arkansas to be CURED.
And that cure is looking more and more elusive.
I don't really know where to take it from here. I suppose there is still some chance that the M-spike could continue to fall, although I've now had four readings: 0.27, 0.29, 0.32 and 0.30. It's hard to be more consistent than that. I'm sure the consolidation treatment will take it down further. Whether or not it goes to zero from consolidation I'm not sure. If it does, then great, I suppose. If not, perhaps I'll get a second cycle of consolidation? Which I'm sure BB might try to resist since that would remove me and my precious data from his study. I would need to go "off protocol." But if that's what it takes, then I will insist on it.
I'm going to try to talk with Dr. SF about all of this before I return to BB's shop next week. I'm going to have a very frank and difficult conversation with BB, and I want to be armed with everything (i.e. the success rate of several cycles of VTD in induction, for example) before doing so. I also want to make sure my logic isn't flawed.
But I don't think it is.
Anyhow...more news as it becomes available. To those of you in the US, have a great 4th of July!
Tuesday, June 30, 2009
A visit from the Noonday Devil
Interesting turn of phrase, right? I always wondered what set the Noonday Devil apart from other devils. I remember it was one of the particular things that Max Von Sydow was hoping to rid poor little Linda Blair of.
Speaking of which...possible side effects of Melphalan shown below.
Anyhow...back to the Noonday Devil.
Turns out that per Augustine, the Noonday Devil, as distinct from other devils, shows up at particular times to make us doubt that "it's all worth it." It's a sadness that sets in...a certain defeatism that targets us when we're getting a little weary of the burden.
Well the Noonday Devil has been paddling my ass most of the day.
I got my results back from last week's labs. 0.3g/dl. I have hit the wall definitively in terms of progress.
Not much else to say, really. My question remains as I identified it last week: if I'm relying on VRD to get remission shouldn't I have been on this in the first place, with transplants (tandem or otherwise) AFTER achieving remission, and then maintenance?
To use another acronym, rather than use VTD-PACE or VRD...how about WTF?
The question is one only BB can answer. Until then, I'll try to keep the Noonday Devil at bay.
Speaking of which...possible side effects of Melphalan shown below.
Anyhow...back to the Noonday Devil.
Turns out that per Augustine, the Noonday Devil, as distinct from other devils, shows up at particular times to make us doubt that "it's all worth it." It's a sadness that sets in...a certain defeatism that targets us when we're getting a little weary of the burden.
Well the Noonday Devil has been paddling my ass most of the day.
I got my results back from last week's labs. 0.3g/dl. I have hit the wall definitively in terms of progress.
Not much else to say, really. My question remains as I identified it last week: if I'm relying on VRD to get remission shouldn't I have been on this in the first place, with transplants (tandem or otherwise) AFTER achieving remission, and then maintenance?
To use another acronym, rather than use VTD-PACE or VRD...how about WTF?
The question is one only BB can answer. Until then, I'll try to keep the Noonday Devil at bay.
Wednesday, June 24, 2009
A visit with Dr. SH, or "stepping outside BB's world for a moment."
In addition to having my blood drawn yesterday, I spoke with Dr. SH, the hematologist / oncologist in Beverly Hills who diagnosed me back in November.
First, I have definitely hit a plateau. The M-spike on my draw last Friday (the 9th) was .32, to go along with .29 the time before and .27 the time before that. SH said these figures are "too low to be of consequence" and that they were all within the margin of error and that it would be impossible to interpret them as rising from this data, so I'm going to assume I am at 0.3 and that is that for this round of treatment.
It does piss me off that I went through a second transplant and only went from 0.7 to 0.3. I expected more. Still, I have a round of consolidation therapy, and then three years of velcade, revlimid and dex. Considering VRD is what most doctors give to people to get them into remission BEFORE a transplant, I'm sure it will get me there. I need to ask BB about the biology behind the difference of the two paths:
Path 1: VRD to achieve remission, then a single transplant to consolidate the gains, ends in no traces of the disease with maintenance therapy.
Path 2: VTD-PACE to reduce cancer, then two transplants, then consolidation therapy, then some amount of VRD to get to remission extending into maintenance therapy, ends in no traces of the disease with maintenance therapy.
I guess what I'm saying is, does the manner in which remission achieved impact biology and if so, how and why? I've always rationalized that I would rather achieve remission early through the powerful "kitchen sink" stuff that BB throws at me, and then have the traditional maintenance as "icing on the cake" so to speak. But it seems I'm not going to get there. It seems increasingly likely that I will need VRD to achieve complete remission (I still refuse to accept the notion that I might not achieve it at all) and if that's the case, why would it not have been better to use VRD pre-transplant followed by double-transplant? In other words, why isn't induction longer under Total Therapy? This is a series of questions that likely has a very long and clinical answer, but I am eager for it. I'll have to ask BB when I see him on the 13th of July.
Now...to SH's comments. Bear in mind, he does not approve of BB's protocol. He thinks it is overkill (both from a chemo standpoint and from a testing standpoint) and that the quality of life caused by the treatment is a real problem. Now, I've made it through pretty damn well, but SH was still saying things like "you have to consider the possibility of leukemia from all this chemo later in life." BB has 15 years of data and said that he's not seen a single episode of late-term leukemia from total therapy, so I'm not worried about that.
Basically:
* I have achieved very good partial response. Without seeing one of the bone marrows, it's impossible for SH to say, but I am "probably in remission." We discussed the nature of remission. In some patients with Chronic Myelogenous Leukemia, they might live to be 85 and die of something else, but there could be leukemic cells in their marrow. Are they in remission (prior to their death, of course)? If not, does it matter? It becomes an intellectual exercise, SH says. I told SH I would feel better about the intellectual exercise if the preponderance of the medical community no longer felt that Myeloma killed people within five years. SH conceded my point.
* In SH's opinion, all the testing is overkill. He almost did a spit take (but he wasn't drinking anything) when I told him I'd had six bone marrows. There is no need for this testing at this point, in his opinion. Watch the M-spike. If it starts going up, I'm no longer in remission. From my standpoint, that's not good enough. I think there is value in the data and it could explain why the M-spike has plateaued. I do think on the margin BB does more testing than is probably necessary, and I may yet veto the FNA with this in mind.
SH is a "control the disease" kind of guy. When I told him that I was won over by BB's data, he said "okay, so you're a believer, then." I was mildly put off by that, actually, but I do see his point: until a double-blind study is done, all that we know is that there is a subset of patients for whom total therapy works very well, and we don't know if they'd have done just as well with a much less toxic regime.
I've been through this logic before: the risk of late-term leukemia is very low, and I'm through 75%+ of the main brunt of treatment with almost no side effects (toes are still tingling a smidge so I'm not going back on the thalidomide until my alpha liopic acid shows up in the mail). I don't care if I could have been cured with something less toxic so long as I am cured.
Anyhow, the bottom line is this: I still have the disease. I am hopeful that the next round of chemo will clobber it some more, and if that doesn't get me into remission, then surely at some point the VRD in maintenance will. If I get a satisfactory answer from BB on the big question I outline above, I may even feel good about it. Right now, I'm still rather upset that I don't seem to be improving any further.
At some point, I will need to draw the line on my treatment and return to life. I had hoped that this would be AFTER I no longer have any trace of the disease. It is looking increasingly as though that won't be an option.
First, I have definitely hit a plateau. The M-spike on my draw last Friday (the 9th) was .32, to go along with .29 the time before and .27 the time before that. SH said these figures are "too low to be of consequence" and that they were all within the margin of error and that it would be impossible to interpret them as rising from this data, so I'm going to assume I am at 0.3 and that is that for this round of treatment.
It does piss me off that I went through a second transplant and only went from 0.7 to 0.3. I expected more. Still, I have a round of consolidation therapy, and then three years of velcade, revlimid and dex. Considering VRD is what most doctors give to people to get them into remission BEFORE a transplant, I'm sure it will get me there. I need to ask BB about the biology behind the difference of the two paths:
Path 1: VRD to achieve remission, then a single transplant to consolidate the gains, ends in no traces of the disease with maintenance therapy.
Path 2: VTD-PACE to reduce cancer, then two transplants, then consolidation therapy, then some amount of VRD to get to remission extending into maintenance therapy, ends in no traces of the disease with maintenance therapy.
I guess what I'm saying is, does the manner in which remission achieved impact biology and if so, how and why? I've always rationalized that I would rather achieve remission early through the powerful "kitchen sink" stuff that BB throws at me, and then have the traditional maintenance as "icing on the cake" so to speak. But it seems I'm not going to get there. It seems increasingly likely that I will need VRD to achieve complete remission (I still refuse to accept the notion that I might not achieve it at all) and if that's the case, why would it not have been better to use VRD pre-transplant followed by double-transplant? In other words, why isn't induction longer under Total Therapy? This is a series of questions that likely has a very long and clinical answer, but I am eager for it. I'll have to ask BB when I see him on the 13th of July.
Now...to SH's comments. Bear in mind, he does not approve of BB's protocol. He thinks it is overkill (both from a chemo standpoint and from a testing standpoint) and that the quality of life caused by the treatment is a real problem. Now, I've made it through pretty damn well, but SH was still saying things like "you have to consider the possibility of leukemia from all this chemo later in life." BB has 15 years of data and said that he's not seen a single episode of late-term leukemia from total therapy, so I'm not worried about that.
Basically:
* I have achieved very good partial response. Without seeing one of the bone marrows, it's impossible for SH to say, but I am "probably in remission." We discussed the nature of remission. In some patients with Chronic Myelogenous Leukemia, they might live to be 85 and die of something else, but there could be leukemic cells in their marrow. Are they in remission (prior to their death, of course)? If not, does it matter? It becomes an intellectual exercise, SH says. I told SH I would feel better about the intellectual exercise if the preponderance of the medical community no longer felt that Myeloma killed people within five years. SH conceded my point.
* In SH's opinion, all the testing is overkill. He almost did a spit take (but he wasn't drinking anything) when I told him I'd had six bone marrows. There is no need for this testing at this point, in his opinion. Watch the M-spike. If it starts going up, I'm no longer in remission. From my standpoint, that's not good enough. I think there is value in the data and it could explain why the M-spike has plateaued. I do think on the margin BB does more testing than is probably necessary, and I may yet veto the FNA with this in mind.
SH is a "control the disease" kind of guy. When I told him that I was won over by BB's data, he said "okay, so you're a believer, then." I was mildly put off by that, actually, but I do see his point: until a double-blind study is done, all that we know is that there is a subset of patients for whom total therapy works very well, and we don't know if they'd have done just as well with a much less toxic regime.
I've been through this logic before: the risk of late-term leukemia is very low, and I'm through 75%+ of the main brunt of treatment with almost no side effects (toes are still tingling a smidge so I'm not going back on the thalidomide until my alpha liopic acid shows up in the mail). I don't care if I could have been cured with something less toxic so long as I am cured.
Anyhow, the bottom line is this: I still have the disease. I am hopeful that the next round of chemo will clobber it some more, and if that doesn't get me into remission, then surely at some point the VRD in maintenance will. If I get a satisfactory answer from BB on the big question I outline above, I may even feel good about it. Right now, I'm still rather upset that I don't seem to be improving any further.
At some point, I will need to draw the line on my treatment and return to life. I had hoped that this would be AFTER I no longer have any trace of the disease. It is looking increasingly as though that won't be an option.
Tuesday, June 23, 2009
A break from Myeloma...some cooking exploits!
Because it can't always be about cancer...and because, dammit, I'm very proud of what I pulled off last night...
One of my favorite chefs is Michael Mina, and his flagship restaurant in San Francisco is one of my favorites in the world (he also has played a major role in bringing fine dining to Las Vegas and his restaurants there are top notch). When the wife and I went to Michael Mina in February, we came home with his cookbook.
This cookbook is pretty aggressive...the whole restaurant there is organized around the concept of "trios" where a particular type of food, whether an appetizer, main course or dessert, is prepared and then served three different ways in small portions. This means, of course, three times the preparation time. Plus the recipes themselves are quite involved...each of the three preparations might have, in addition to the actual food itself, two kinds of sauces and two or three additional little things with it.
I do, however, love a challenge. And I enjoy cooking. In some ways, it has the same appeal to me that tinkering with a chemistry set at age 10 did: you pour a bunch of stuff together, it fizzes, changes colors, smells different, and then you make somebody eat it!
So when Jill gave me these special plates for Father's Day that have three little divided compartments and which are tailor made for this "trio" concept, I knew I had to give it a shot.
The cookbook itself is one of those that is beautiful to look at but IMMENSELY complicated and not put together in a sensible way. For example, there will be literally ten things that all need to be prepared in parallel, but there is no information about how to sequence them. The book also does things like, in a very time-sensitive recipe where panic is setting in, say "add one tablespoon of sauce X that takes 6 hours to make and which I haven't mentioned yet." I spent literally four hours on Sunday transcribing the recipes from the cookbook and trying to make some sequence out of them, and made my shopping list. On Monday morning I shopped, and I started cooking at 3:30PM. I was in constant motion until the main course was served at 10:45PM. So literally seven hours of cooking for probably ten minutes, at most, of eating. Not sure about the tradeoff...
Anyhow, here's what we ate.
The appetizer: seared scallops on miniature grated potato cakes, presented three ways.
Left to right, the first was on a corn tarragon pudding, with black truffle, with scallop ceviche in black truffle vinaigrette and truffled corn compote.
The second was on a red beet beurre rouge sauce (the only sauce that broke, dammit!) with scallop ceviche in champagne wine vinaigrette and beet garnish.
The third was on a beurre blanc sauce with lobster and scallop ceviche in lemon marinade.
This third preparation also calls for caviar to be put on top of the ceviche and on top of the lobster bits, but I can take it or leave it, the wife doesn't really like it, and even I have to draw the overkill line somewhere -- buying a tin of the stuff in order to use 1/2 a teaspoon for two people would be completely egregious.
For the main, we had butter-poached prime filet in pinot noir reduction, again served three ways. Frankly, while an interesting preparation it wastes a LOT of butter and it could much more easily be made by cooking a steak on a flat-iron skillet (my preferred method). Nonetheless, it was tasty. It was supposed to be "real" medium-rare; it probably came out medium which I wasn't thrilled about but it was still good.
Left to right, the first preparation was on a bed of horseradish mashed potatoes, with baked cippolini onions and buttermilk onion rings.
The second was on a bed of bernaise sauce with broiled asparagus tips, served with salt-baked yukon potato with tarragon butter, creme fraiche, fresh bacon bits and fresh-cut chives.
The third was with miniature potato cakes and garlic-wilted fresh spinach, served with horseradish cream sauce.
This third treatment in the book calls for a foie gras reduction as well, but I'm ethically opposed to foie gras, and I don't like the taste of it either...so nuts to that.
Not pictured in the steak preparation is the pinot noir reduction itself, which I forgot to pour until after the pictures had already been taken (but I was terrified another sauce was going to break so we needed to eat quickly and I didn't have time for more pictures).
Needless to say...I hope they don't run cholesterol numbers when I hit the doctor's office this afternoon. I plan on speaking with Dr. SH to keep him abreast of what I've done and where I am in treatment. I expect he will tell me that BB's program is overkill, that all the testing is overkill, and that maintenance therapy is overkill...although SH is good enough to note that others disagree with him on the latter point, in particular. I'm very appreciative that SH, even though he disagrees with BB's protocol, told me to investigate him.
Hopefully, I will have good news from the lab draw last Friday. As it turns out, I'd been taking a little too much of the Thalidomide (oops!). I'd been taking 200mg a day, which is what they do during chemo, but during "bridging" therapy I'm only supposed to take 100mg a day. I've cut it out completely, but I will resume it tomorrow at 100mg and see what happens.
One last thing re: the cooking last night...a picture of the chef, about to do battle with multiple butter-based sauces.
One of my favorite chefs is Michael Mina, and his flagship restaurant in San Francisco is one of my favorites in the world (he also has played a major role in bringing fine dining to Las Vegas and his restaurants there are top notch). When the wife and I went to Michael Mina in February, we came home with his cookbook.
This cookbook is pretty aggressive...the whole restaurant there is organized around the concept of "trios" where a particular type of food, whether an appetizer, main course or dessert, is prepared and then served three different ways in small portions. This means, of course, three times the preparation time. Plus the recipes themselves are quite involved...each of the three preparations might have, in addition to the actual food itself, two kinds of sauces and two or three additional little things with it.
I do, however, love a challenge. And I enjoy cooking. In some ways, it has the same appeal to me that tinkering with a chemistry set at age 10 did: you pour a bunch of stuff together, it fizzes, changes colors, smells different, and then you make somebody eat it!
So when Jill gave me these special plates for Father's Day that have three little divided compartments and which are tailor made for this "trio" concept, I knew I had to give it a shot.
The cookbook itself is one of those that is beautiful to look at but IMMENSELY complicated and not put together in a sensible way. For example, there will be literally ten things that all need to be prepared in parallel, but there is no information about how to sequence them. The book also does things like, in a very time-sensitive recipe where panic is setting in, say "add one tablespoon of sauce X that takes 6 hours to make and which I haven't mentioned yet." I spent literally four hours on Sunday transcribing the recipes from the cookbook and trying to make some sequence out of them, and made my shopping list. On Monday morning I shopped, and I started cooking at 3:30PM. I was in constant motion until the main course was served at 10:45PM. So literally seven hours of cooking for probably ten minutes, at most, of eating. Not sure about the tradeoff...
Anyhow, here's what we ate.
The appetizer: seared scallops on miniature grated potato cakes, presented three ways.
Left to right, the first was on a corn tarragon pudding, with black truffle, with scallop ceviche in black truffle vinaigrette and truffled corn compote.
The second was on a red beet beurre rouge sauce (the only sauce that broke, dammit!) with scallop ceviche in champagne wine vinaigrette and beet garnish.
The third was on a beurre blanc sauce with lobster and scallop ceviche in lemon marinade.
This third preparation also calls for caviar to be put on top of the ceviche and on top of the lobster bits, but I can take it or leave it, the wife doesn't really like it, and even I have to draw the overkill line somewhere -- buying a tin of the stuff in order to use 1/2 a teaspoon for two people would be completely egregious.
For the main, we had butter-poached prime filet in pinot noir reduction, again served three ways. Frankly, while an interesting preparation it wastes a LOT of butter and it could much more easily be made by cooking a steak on a flat-iron skillet (my preferred method). Nonetheless, it was tasty. It was supposed to be "real" medium-rare; it probably came out medium which I wasn't thrilled about but it was still good.
Left to right, the first preparation was on a bed of horseradish mashed potatoes, with baked cippolini onions and buttermilk onion rings.
The second was on a bed of bernaise sauce with broiled asparagus tips, served with salt-baked yukon potato with tarragon butter, creme fraiche, fresh bacon bits and fresh-cut chives.
The third was with miniature potato cakes and garlic-wilted fresh spinach, served with horseradish cream sauce.
This third treatment in the book calls for a foie gras reduction as well, but I'm ethically opposed to foie gras, and I don't like the taste of it either...so nuts to that.
Not pictured in the steak preparation is the pinot noir reduction itself, which I forgot to pour until after the pictures had already been taken (but I was terrified another sauce was going to break so we needed to eat quickly and I didn't have time for more pictures).
Needless to say...I hope they don't run cholesterol numbers when I hit the doctor's office this afternoon. I plan on speaking with Dr. SH to keep him abreast of what I've done and where I am in treatment. I expect he will tell me that BB's program is overkill, that all the testing is overkill, and that maintenance therapy is overkill...although SH is good enough to note that others disagree with him on the latter point, in particular. I'm very appreciative that SH, even though he disagrees with BB's protocol, told me to investigate him.
Hopefully, I will have good news from the lab draw last Friday. As it turns out, I'd been taking a little too much of the Thalidomide (oops!). I'd been taking 200mg a day, which is what they do during chemo, but during "bridging" therapy I'm only supposed to take 100mg a day. I've cut it out completely, but I will resume it tomorrow at 100mg and see what happens.
One last thing re: the cooking last night...a picture of the chef, about to do battle with multiple butter-based sauces.
Monday, June 22, 2009
Side effect round-up...
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.
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.
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.
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