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!
Wednesday, June 3, 2009
Tuesday, June 2, 2009
Transplant B, Day +6: Platelets and other news...
So...another uneventful day, for the most part. Whites are at 0.02, which was where they bottomed out before. Hemoglobin still north of 11. Platelets fell to 8, so I got a bag today, and I'll probably need more tomorrow based on last time. Electrolytes are all in good shape, CRP is down to just over 10. All good.
Shared the room with the same guy from yesterday and a different daughter (presumably not one getting married in a feed store although I bet she's no stranger to such events) and I'm not sure the guy stopped talking at any point in the intermitting 24 hours between visits. Nice enough fellow (or fella, or even feller) though, and I hope the treatment works for him. He's on the standard branch and is three weeks after his first transplant, and his whites are still not high enough for him to be discharged. He's also got (per a variety of stories he told) nausea, colitis, the shakes, voices in his head, "the boo-hoos" and panic attacks. Okay, I made up the voices part. But not the rest.
I'm fortunate to be weathering this as well as I have been.
I learned two new things to look for clinically. The first is Immature Reticulocytes. These are, I guess, baby white blood cells. The count there will double approximately four days before white blood cells rebound. As of now, they are stable and low, so I'm probably at least four days out from the end of neutropenia. No problem, so long as I don't get sick!
The second thing, and the ultimate goal, is now a little more specific. Once the M-spike has fallen to zero and cannot be observed in the normal blood analysis, it is then subject to a more sensitive test called immunofixation. It's possible for the normal protein electrophoresis to show a zero M-spike, and still have M-protein under immunofixation analysis. So what we are looking for is technically called "Immunofixation-Negative Complete Remission." I will obviously keep the blog updated on that!
Having said this, I couldn't resist a peek at my tumor markers. The most recent ones were drawn last Thursday (I had more drawn yesterday but the results are still in the lab). Now mind you, the purpose of the chemo/transplant process is to kill my blood off and replace it with new blood. The old blood is now dead (the white blood cell count is a good proxy for the overall blood system) but as of last Thursday, a lot of the blood was kicking around. So as an indication of the effectiveness of the therapy, anything drawn before this upcoming Thursday is probably not worth a whole lot.
Nonetheless, I checked out the data from five days ago. M-spike at 0.5 (dammit I know it won't have bottomed out yet but I really wanted it to be zero!) and IgG at 890. IgG is now well within normal range (700-1400) so that is a good sign. Obviously, we want that M-spike to be 0.0 and we want negative results from immunifixation analysis. A watched M-spike never drops, as they say. But mine will, and you'll be updated every step of the way.
Feeling good, albeit exhausted still. The horrible rash from the Dex appears to be subsiding and with any luck it will be gone in the next few days.
Onward!
Shared the room with the same guy from yesterday and a different daughter (presumably not one getting married in a feed store although I bet she's no stranger to such events) and I'm not sure the guy stopped talking at any point in the intermitting 24 hours between visits. Nice enough fellow (or fella, or even feller) though, and I hope the treatment works for him. He's on the standard branch and is three weeks after his first transplant, and his whites are still not high enough for him to be discharged. He's also got (per a variety of stories he told) nausea, colitis, the shakes, voices in his head, "the boo-hoos" and panic attacks. Okay, I made up the voices part. But not the rest.
I'm fortunate to be weathering this as well as I have been.
I learned two new things to look for clinically. The first is Immature Reticulocytes. These are, I guess, baby white blood cells. The count there will double approximately four days before white blood cells rebound. As of now, they are stable and low, so I'm probably at least four days out from the end of neutropenia. No problem, so long as I don't get sick!
The second thing, and the ultimate goal, is now a little more specific. Once the M-spike has fallen to zero and cannot be observed in the normal blood analysis, it is then subject to a more sensitive test called immunofixation. It's possible for the normal protein electrophoresis to show a zero M-spike, and still have M-protein under immunofixation analysis. So what we are looking for is technically called "Immunofixation-Negative Complete Remission." I will obviously keep the blog updated on that!
Having said this, I couldn't resist a peek at my tumor markers. The most recent ones were drawn last Thursday (I had more drawn yesterday but the results are still in the lab). Now mind you, the purpose of the chemo/transplant process is to kill my blood off and replace it with new blood. The old blood is now dead (the white blood cell count is a good proxy for the overall blood system) but as of last Thursday, a lot of the blood was kicking around. So as an indication of the effectiveness of the therapy, anything drawn before this upcoming Thursday is probably not worth a whole lot.
Nonetheless, I checked out the data from five days ago. M-spike at 0.5 (dammit I know it won't have bottomed out yet but I really wanted it to be zero!) and IgG at 890. IgG is now well within normal range (700-1400) so that is a good sign. Obviously, we want that M-spike to be 0.0 and we want negative results from immunifixation analysis. A watched M-spike never drops, as they say. But mine will, and you'll be updated every step of the way.
Feeling good, albeit exhausted still. The horrible rash from the Dex appears to be subsiding and with any luck it will be gone in the next few days.
Onward!
Monday, June 1, 2009
Transplant B, Day +5: Full-blown neutropenia
As expected, WBC crashed today to 0.16. Hopefully it will only be here another 4-5 days -- we'll be watching closely. I'm sure it will get lower before it starts to climb. Platelets at 22, so tomorrow I'll need a bag. Hemoglobin at 11.4, which they think is slightly overstated due to being dehydrated (I begged to differ with the nurse on this...just because I've lost 15 of the 20 water-weight pounds doesn't make me dehydrated...but they gave me fluids anyway). But regardless, reds are higher than they were last time, which is good for the energy.
Now it's a waiting game for the new immune system to engraft. Will keep you all posted!
Oh, notably, shared a room with a family from the sticks. Overheard: daughter planning an after-party for her wedding in a feed store; mother claiming "that sounds too redneck."
No, not making that up.
Now it's a waiting game for the new immune system to engraft. Will keep you all posted!
Oh, notably, shared a room with a family from the sticks. Overheard: daughter planning an after-party for her wedding in a feed store; mother claiming "that sounds too redneck."
No, not making that up.
Sunday, May 31, 2009
Transplant B, Day +4: Whites hanging on
Another uneventful day in the infusion center. White counts are around 1, which means tomorrow should be a full-blown crash just like last time. Hemoglobin is at 11.1, which is higher than before, and seems to indicate that I won't need a blood transfusion, which is good. Platelets fell to 32 today, which means I will probably need a bag tomorrow.
Electrolytes were in good shape, so no potassium infuser is needed. CRP is at 11 and change, which is (I think) to be expected given the struggle of my marrow to start making blood. I've also got a nasty rash from the treatment which looks like severe acne on my neck. I'm told this will go away on its own, but it looks gnarly and is likely responsible for part of the CRP increase.
I'll head back tomorrow for more of the same. No tumor marker data yet -- probably won't get that until Thursday or possibly Saturday but I'll be keeping an eye peeled for it!
Be well everybody.
Electrolytes were in good shape, so no potassium infuser is needed. CRP is at 11 and change, which is (I think) to be expected given the struggle of my marrow to start making blood. I've also got a nasty rash from the treatment which looks like severe acne on my neck. I'm told this will go away on its own, but it looks gnarly and is likely responsible for part of the CRP increase.
I'll head back tomorrow for more of the same. No tumor marker data yet -- probably won't get that until Thursday or possibly Saturday but I'll be keeping an eye peeled for it!
Be well everybody.
Saturday, May 30, 2009
Transplant B, Day +3: Temporary white spike...
Just like last time. The urging of the Neupogen shot made what's left of my poor dying bone marrow give up its white cells, and my WBC is now in the 5.X range. That should mean that tomorrow or at the latest Monday will be the huge crash, which is the necessary rite of passage to new cancer-free bone marrow, so we're on the right track.
Everything else was good today -- didn't need platelets and my electrolytes (Potassium, Magnesium, etc.) were all in balance. We were in and out of the 7th floor in half an hour (they called later with lab results since the lab was behind and they didn't want me to have to wait).
I took a two hour nap in the late afternoon and that seems to have helped with energy. I've lost 10 pounds of water-weight...still have another 10 to go. Eating like a horse so I'm not sure how much I'll be able to get rid of simply by processing water, but hopefully I'll get back to where I was before the Dex took hold.
Have a good weekend, everyone!
Everything else was good today -- didn't need platelets and my electrolytes (Potassium, Magnesium, etc.) were all in balance. We were in and out of the 7th floor in half an hour (they called later with lab results since the lab was behind and they didn't want me to have to wait).
I took a two hour nap in the late afternoon and that seems to have helped with energy. I've lost 10 pounds of water-weight...still have another 10 to go. Eating like a horse so I'm not sure how much I'll be able to get rid of simply by processing water, but hopefully I'll get back to where I was before the Dex took hold.
Have a good weekend, everyone!
Transplant B, Day +2: Maniac Nurse
Everything seems to be happening more rapidly this time.
I'm feeling pretty good. I had one bout of GI issues the night before last, and I was seriously regretting my decision to get the "volcano sauce" at the Whole Hog BBQ, but old habits die hard, I suppose. Anyhow, two Immodium later and I've been okay since...keeping my fingers crossed.
I went to the 7th floor yesterday and in contrast to previous days, it was a long, drawn-out experience. The floor was full. Evidently there had been a transplant yesterday with some complications and that threw everything off. But eventually, I was called in for vitals, which checked out. No nausea, the one bout of GI problems, otherwise doing well. So far, so good.
THANKFULLY, my body has started relinquishing the fluid that it's been hoarding for a week. I'm down six pounds from yesterday. Hopefully that trend will continue. I have been eating like a horse (this is advised to keep up one's strength during the transplant process, so I've been bowing to my appetite). Most of the weight I have gained, though, should be coming off.
Things were moving along fine until the nurse tried to draw blood from my lines. Bone dry. This happens once in a while, and they tell me to breathe deeply and that usually starts the stuff flowing. No dice this time. They generally use Heparin to make sure nothing in the line clots, and putting a bit more heparin in the lines has done the trick before. The assigned nursed tried a different tack, though. She thought it would be a good idea to suddenly jam about 50ccs of saline in rapid succession into the three lines, slamming on the plungers like she was administering an adrenaline shot through the breastbone. I started getting lightheaded. She started cackling knowingly.
I kept getting more lightheaded...I heard "hyuk hyuk hyuk...you feelin' like yur gonna pass out on me??? hyuk hyuk hyuk" as my field of vision blurred. She ran my blood pressure. It had been 135 over 80 but was now 80 over 50. I've always wanted slightly lower blood pressure but anytime I see 80/50 on a TV show it is usually followed by something dire. I laid down on a chair and after a minute or two (during which time the nurse showed my blood pressure numbers in a conspiratorial fashion to the APN/nurse in charge, which rubbed me the wrong way) I started feeling better.
With that scare out of the way, we waited on labs while the nurse tried to explain that the light-headedness sometimes happens and I wondered if the light-headedness happens without the nurse acting like she's abruptly trying to release the Hoover Dam into my chest. The labs themselves were good: white blood count at 1.0, platelets at 97, hemoglobin holding at 11, CRP at 5.8 and Potassium at a healthy 4.4, meaning for once no more infusers were needed. I'd had TWO huge baked potatoes the previous day, and wasn't keen on having another, so I was pleased I didn't need it.
The rest of the day was uneventful, although it took us a good 90 minutes to get them to prepare the broad-spectrum antibiotic that they want me to have on hand in the event of a fever over the weekend, and to get the first of 6-10 dreaded growth factor shots.
Since Neutropenia has happened a couple of days faster post-transplant than the last time, I wonder if my recovery will take the same amount of time, or shorter, or longer. Hopefully it will be 7-8 days of Neutropenia just as last time, which will mean I'll be on the other side of this transplant sooner rather than later.
I got a good night's sleep last night, and my stomach has settled, so right now I'm just fighting the tiredness that comes from being wiped out...and that's pretty manageable so far. Will post an update after labs today.
I'm feeling pretty good. I had one bout of GI issues the night before last, and I was seriously regretting my decision to get the "volcano sauce" at the Whole Hog BBQ, but old habits die hard, I suppose. Anyhow, two Immodium later and I've been okay since...keeping my fingers crossed.
I went to the 7th floor yesterday and in contrast to previous days, it was a long, drawn-out experience. The floor was full. Evidently there had been a transplant yesterday with some complications and that threw everything off. But eventually, I was called in for vitals, which checked out. No nausea, the one bout of GI problems, otherwise doing well. So far, so good.
THANKFULLY, my body has started relinquishing the fluid that it's been hoarding for a week. I'm down six pounds from yesterday. Hopefully that trend will continue. I have been eating like a horse (this is advised to keep up one's strength during the transplant process, so I've been bowing to my appetite). Most of the weight I have gained, though, should be coming off.
Things were moving along fine until the nurse tried to draw blood from my lines. Bone dry. This happens once in a while, and they tell me to breathe deeply and that usually starts the stuff flowing. No dice this time. They generally use Heparin to make sure nothing in the line clots, and putting a bit more heparin in the lines has done the trick before. The assigned nursed tried a different tack, though. She thought it would be a good idea to suddenly jam about 50ccs of saline in rapid succession into the three lines, slamming on the plungers like she was administering an adrenaline shot through the breastbone. I started getting lightheaded. She started cackling knowingly.
I kept getting more lightheaded...I heard "hyuk hyuk hyuk...you feelin' like yur gonna pass out on me??? hyuk hyuk hyuk" as my field of vision blurred. She ran my blood pressure. It had been 135 over 80 but was now 80 over 50. I've always wanted slightly lower blood pressure but anytime I see 80/50 on a TV show it is usually followed by something dire. I laid down on a chair and after a minute or two (during which time the nurse showed my blood pressure numbers in a conspiratorial fashion to the APN/nurse in charge, which rubbed me the wrong way) I started feeling better.
With that scare out of the way, we waited on labs while the nurse tried to explain that the light-headedness sometimes happens and I wondered if the light-headedness happens without the nurse acting like she's abruptly trying to release the Hoover Dam into my chest. The labs themselves were good: white blood count at 1.0, platelets at 97, hemoglobin holding at 11, CRP at 5.8 and Potassium at a healthy 4.4, meaning for once no more infusers were needed. I'd had TWO huge baked potatoes the previous day, and wasn't keen on having another, so I was pleased I didn't need it.
The rest of the day was uneventful, although it took us a good 90 minutes to get them to prepare the broad-spectrum antibiotic that they want me to have on hand in the event of a fever over the weekend, and to get the first of 6-10 dreaded growth factor shots.
Since Neutropenia has happened a couple of days faster post-transplant than the last time, I wonder if my recovery will take the same amount of time, or shorter, or longer. Hopefully it will be 7-8 days of Neutropenia just as last time, which will mean I'll be on the other side of this transplant sooner rather than later.
I got a good night's sleep last night, and my stomach has settled, so right now I'm just fighting the tiredness that comes from being wiped out...and that's pretty manageable so far. Will post an update after labs today.
Thursday, May 28, 2009
Transplant B, Day +1: Some things I've learned
1. It is possible to gain TWENTY POUNDS of water weight in a week. I am so bloated I can barely move.
2. After a transplant, taking a sleep aid is essential. I got not a single wink last night. Tonight I'll try Ativan or Ambien depending on how tired I am. All the messing about with Thaldomide and Dex has thrown my internal clock for a loop.
3. If the embroidery woman in the waiting room tries to strike up a conversation, pretend you are from Kyrgyzstan and don't speak English. I cannot overstate the importance of this lesson.
4. I don't like diarrhea. I really don't care for it at all.
White counts are down to 3.18, but not yet neutropenic. Hemoglobin at 10.6, essentially stable and I hope it doesn't go any lower. Platelets at 91. It seems the crash is coming on faster now than with the last transplant, which is fine so long as the rebound occurs faster as well!
My Potassium is still not cooperating, so I have two more infusers to go. Liver numbers still haywire from the Fluconazole, Velcade and whatever other poison is irritating it, but they aren't alarmingly high so we'll press on. CRP still low, which is good because I have fluid in my lungs (along with everyplace else in my body) and I wanted to make sure that's just a function of bloating rather than anything else. Kidney function is still good.
On the protein side of things, total protein and albumin both fell. The albumin we want to be high, but it's really the ratio of the nasty M-protein to the albumin that we want to watch. Total protein is the lowest it has been (5.1, low normal is 6.5) so I am hoping the M-component of that is now zero...but I know that we won't get an accurate read on that until the labs that are drawn a week from today, so I'm anticipating news on the cancer markers in about 9 days. Seems a long time to wait, but hopefully it will be worth it.
More news as events merit!
2. After a transplant, taking a sleep aid is essential. I got not a single wink last night. Tonight I'll try Ativan or Ambien depending on how tired I am. All the messing about with Thaldomide and Dex has thrown my internal clock for a loop.
3. If the embroidery woman in the waiting room tries to strike up a conversation, pretend you are from Kyrgyzstan and don't speak English. I cannot overstate the importance of this lesson.
4. I don't like diarrhea. I really don't care for it at all.
White counts are down to 3.18, but not yet neutropenic. Hemoglobin at 10.6, essentially stable and I hope it doesn't go any lower. Platelets at 91. It seems the crash is coming on faster now than with the last transplant, which is fine so long as the rebound occurs faster as well!
My Potassium is still not cooperating, so I have two more infusers to go. Liver numbers still haywire from the Fluconazole, Velcade and whatever other poison is irritating it, but they aren't alarmingly high so we'll press on. CRP still low, which is good because I have fluid in my lungs (along with everyplace else in my body) and I wanted to make sure that's just a function of bloating rather than anything else. Kidney function is still good.
On the protein side of things, total protein and albumin both fell. The albumin we want to be high, but it's really the ratio of the nasty M-protein to the albumin that we want to watch. Total protein is the lowest it has been (5.1, low normal is 6.5) so I am hoping the M-component of that is now zero...but I know that we won't get an accurate read on that until the labs that are drawn a week from today, so I'm anticipating news on the cancer markers in about 9 days. Seems a long time to wait, but hopefully it will be worth it.
More news as events merit!
Wednesday, May 27, 2009
Transplant B, Day 0: Did somebody get the number of that bus...
I forgot how much this takes outtaya, red blood counts be damned (mine are down to 10.8 at this point...by the way, I track red blood count in Hemoglobin...my actual RBC is between 3 and 4, which is low, but Hemoglobin needs to stay about 8 otherwise I need an infusion, so that's the number I look at).
Got my stem cells today. 7.9 million of them, versus 3.9 million last time. This leaves me with about 17 million more -- enough for three transplants or so, not that I'll think I'll ever need them. I asked about them giving me more in an effort to speed engraftment but they said it makes no difference. They usually give more the second time, and anything beyond that is just kinda picking out a bag and seeing how many cells are in it (I got two bags). I compared this to going to the grocer and wanting 1.5 pounds of good quality tuna steak and seeing how many filets of different sizes it takes to get to the right total weight. There was at least dim recognition in the eyes of the nurse so I gather the metaphor translated.
My kidneys are not doing a good job of retaining Potassium, so the two infusers I had yesterday must be repeated. They also gave me a pill (Spironolactone) that is supposed to encourage the kidneys to retain potassium rather than pee it all away, so I'll add back one more pill to the (thankfully) dwindling regimen. I'm down to the antifungal, antiviral, antibiotic, antiflu and now anti-peeing-out-potassium.
After the transplant, my heart rate was 120 and my blood pressure was around 165 over 97. They kept me for a couple of hours to monitor this, but at the end of the day it's all the damn fluid retension from the Dex. I'm up FIFTEEN POUNDS in five days. Ugh. Soon, I'll be peeing all this out but in the meantime my ankles are so swollen it hurts to wear shoes and I can barely move around. I feel like the guy at the end of the Monty Python sketch where he's eaten too much and is swelling to the point of bursting. Or, rather, one of the Thunders from Big Trouble in Little China who just expands until he explodes.
Yeah...THIS guy:
Anyhow, hopefully that is temporary.
Other than the potassium, the transitory high blood pressure, and the utter exhaustion, I feel pretty good, all things considered. For those interested in poop, I'll be discontinuing the Senna -- bracing myself for diarrhea at this point. I have to say, I went back and read all that stuff I wrote while I was doped up on Dilaudid and it's pretty damn funny but I'm not sure I'm going to have too many more Merciless Turds from Outer Space stories on here, so those yucks may be behind us. I'll have to find more fertile ground for humor. It's getting harder, though...people here are so nice and devoted to my care that it's not that easy to mock them relentlessly. :)
On the subject of sweet sentiment, we were treated to a very nice moment today. I was wearing a shirt given to me by the good people at PinnacleCare that reads "Cancer Sucks." Seemed like an appropriate "stick it to the man" type thing to wear on such an auspicious day as my second stem cell transplant. Jill and I went out to lunch at an upscale burger joint called Cheers, since I still have white cells and soon I'll be under bubble-boy lockdown in the apartment so we're enjoying the ability to go out when we can. We had finished our lunch when we were told that a nice young couple with their young son sitting outside had paid our tab.
We went out and spoke with this lovely couple from Chicago for about 20 minutes. Lance had been treated here for Myeloma, after diagnosis in his early 30s. He began treatment elsewhere and it didn't take, so he came here and went off protocol, did SuperBeam plus some very strong Velcade therapy, but it wiped out the Myeloma. He and his wife were dining once and had their tab paid for by others under similar circumstances and decided to keep the good will / karmic wheel rolling. Jill and I were very, very touched and will keep this in mind -- sooner or later there'll be a similar opportunity. I thought back to when I gave the guy that cut my hair some money to pay for a child that couldn't afford it...that time of thing is a small gesture but very meaningful when you are on the receiving end of it.
Lance had only great things to say about his experience in Arkansas and the state of his immune system post-transplant, which is something I've been modestly curious about since KG of the MMRF had told me her immune system was never the same. Lance used to have allergies and no longer does, is almost never sick, and was informed by BB that once somebody has beaten MM on the Arkansas protocol, their life expectancy is actually LONGER than the average person at large because the immune system has been reset so effectively. BB told Lance he has seen hypertension go away, all sorts of other immunodeficiency problems go away, etc. The fact that people are being checked frequently for three years is also a factor, I'm sure.
In all, a great day...but I am bushed and back to bed now. Looking forward to a visit from my friend Geoff tomorrow, while Jill will get to pop back to LA to see the kiddies. Geoff, I hope I have the stamina to get off the couch while you are here!
Got my stem cells today. 7.9 million of them, versus 3.9 million last time. This leaves me with about 17 million more -- enough for three transplants or so, not that I'll think I'll ever need them. I asked about them giving me more in an effort to speed engraftment but they said it makes no difference. They usually give more the second time, and anything beyond that is just kinda picking out a bag and seeing how many cells are in it (I got two bags). I compared this to going to the grocer and wanting 1.5 pounds of good quality tuna steak and seeing how many filets of different sizes it takes to get to the right total weight. There was at least dim recognition in the eyes of the nurse so I gather the metaphor translated.
My kidneys are not doing a good job of retaining Potassium, so the two infusers I had yesterday must be repeated. They also gave me a pill (Spironolactone) that is supposed to encourage the kidneys to retain potassium rather than pee it all away, so I'll add back one more pill to the (thankfully) dwindling regimen. I'm down to the antifungal, antiviral, antibiotic, antiflu and now anti-peeing-out-potassium.
After the transplant, my heart rate was 120 and my blood pressure was around 165 over 97. They kept me for a couple of hours to monitor this, but at the end of the day it's all the damn fluid retension from the Dex. I'm up FIFTEEN POUNDS in five days. Ugh. Soon, I'll be peeing all this out but in the meantime my ankles are so swollen it hurts to wear shoes and I can barely move around. I feel like the guy at the end of the Monty Python sketch where he's eaten too much and is swelling to the point of bursting. Or, rather, one of the Thunders from Big Trouble in Little China who just expands until he explodes.
Yeah...THIS guy:
Anyhow, hopefully that is temporary.
Other than the potassium, the transitory high blood pressure, and the utter exhaustion, I feel pretty good, all things considered. For those interested in poop, I'll be discontinuing the Senna -- bracing myself for diarrhea at this point. I have to say, I went back and read all that stuff I wrote while I was doped up on Dilaudid and it's pretty damn funny but I'm not sure I'm going to have too many more Merciless Turds from Outer Space stories on here, so those yucks may be behind us. I'll have to find more fertile ground for humor. It's getting harder, though...people here are so nice and devoted to my care that it's not that easy to mock them relentlessly. :)
On the subject of sweet sentiment, we were treated to a very nice moment today. I was wearing a shirt given to me by the good people at PinnacleCare that reads "Cancer Sucks." Seemed like an appropriate "stick it to the man" type thing to wear on such an auspicious day as my second stem cell transplant. Jill and I went out to lunch at an upscale burger joint called Cheers, since I still have white cells and soon I'll be under bubble-boy lockdown in the apartment so we're enjoying the ability to go out when we can. We had finished our lunch when we were told that a nice young couple with their young son sitting outside had paid our tab.
We went out and spoke with this lovely couple from Chicago for about 20 minutes. Lance had been treated here for Myeloma, after diagnosis in his early 30s. He began treatment elsewhere and it didn't take, so he came here and went off protocol, did SuperBeam plus some very strong Velcade therapy, but it wiped out the Myeloma. He and his wife were dining once and had their tab paid for by others under similar circumstances and decided to keep the good will / karmic wheel rolling. Jill and I were very, very touched and will keep this in mind -- sooner or later there'll be a similar opportunity. I thought back to when I gave the guy that cut my hair some money to pay for a child that couldn't afford it...that time of thing is a small gesture but very meaningful when you are on the receiving end of it.
Lance had only great things to say about his experience in Arkansas and the state of his immune system post-transplant, which is something I've been modestly curious about since KG of the MMRF had told me her immune system was never the same. Lance used to have allergies and no longer does, is almost never sick, and was informed by BB that once somebody has beaten MM on the Arkansas protocol, their life expectancy is actually LONGER than the average person at large because the immune system has been reset so effectively. BB told Lance he has seen hypertension go away, all sorts of other immunodeficiency problems go away, etc. The fact that people are being checked frequently for three years is also a factor, I'm sure.
In all, a great day...but I am bushed and back to bed now. Looking forward to a visit from my friend Geoff tomorrow, while Jill will get to pop back to LA to see the kiddies. Geoff, I hope I have the stamina to get off the couch while you are here!
Tuesday, May 26, 2009
Transplant B, Day -1
Back from the final round of Melphalan, and the last dose of Dex for this go-round (thank God, as I'm bloated and up 11 pounds and it's doing everything from making my eyes unable to focus to making my ankles too big for my pants) and so with the exception of the Thalidomide this evening, that will be the last of the poison for round three of chemo. Hurray!
I have minimal side effects other than exhaustion -- I feel like I've been hit by a bus. That's to be expected. Red blood counts fell to 11.1 and I hope they don't go any lower -- I got used to them being up around 13.5 and it felt good in that range. Whites are hanging on in the 7.X range, and platelets are at 159. So no crash yet from the chemo, but we know it's coming.
Potassium dropped below the low-end of normal (3.5) to 3.2, so they put me on two of those infusers, but otherwise it was an uneventful trip to the 7th floor. I got my second and final dose of Velcade this time around, which I was warned could cause constipation, so I'm going to add back the second daily Senna pill that I just yesterday removed from my regimen. I note from my previous posts that the GI tract gave way pretty nastily on day +4, so I was hoping to wean myself off that, but the tightrope walk between constipation and its converse is a tough one to tread.
The Lovinox hurt, but it's the last one, so that's that.
Now I'm going to crash, much like the Lakers did in last night's debacle against Denver.
ADDENDUM: Some of my friends get a kick out of following the more low-brow elements of my fight, so to you guys (and you know who you are) I am carrying around another jug of urine, to be deposited at the lab tomorrow. Hope this makes you happy.
I have minimal side effects other than exhaustion -- I feel like I've been hit by a bus. That's to be expected. Red blood counts fell to 11.1 and I hope they don't go any lower -- I got used to them being up around 13.5 and it felt good in that range. Whites are hanging on in the 7.X range, and platelets are at 159. So no crash yet from the chemo, but we know it's coming.
Potassium dropped below the low-end of normal (3.5) to 3.2, so they put me on two of those infusers, but otherwise it was an uneventful trip to the 7th floor. I got my second and final dose of Velcade this time around, which I was warned could cause constipation, so I'm going to add back the second daily Senna pill that I just yesterday removed from my regimen. I note from my previous posts that the GI tract gave way pretty nastily on day +4, so I was hoping to wean myself off that, but the tightrope walk between constipation and its converse is a tough one to tread.
The Lovinox hurt, but it's the last one, so that's that.
Now I'm going to crash, much like the Lakers did in last night's debacle against Denver.
ADDENDUM: Some of my friends get a kick out of following the more low-brow elements of my fight, so to you guys (and you know who you are) I am carrying around another jug of urine, to be deposited at the lab tomorrow. Hope this makes you happy.
Monday, May 25, 2009
Transplant B, Day -2: Connectivity and Synchronicity
First, the mundane. White counts continue to climb (8.4 today) as is expected -- the climb before the crash. Red counts basically stable from yesterday (down a hair but not too much). Platelets holding firm at 169, but will be coming down soon. Mustard gas administered without issue, good pre-meds for the nausea are holding it in check. Haven't gone on the Zofran to augment them, although I do take an Ativan at night to help combat the effects of the Dex which would otherwise keep me awake.
All my electrolytes are in good shape, creatinine still low, and liver numbers are beginning to settle down, which is welcome news. A lot of these numbers are going to bounce around during chemo so I don't worry about them too much, although I want to make sure the creatinine is on the low end as that ensures good kidney function.
Speaking of which, my kidneys are slowing down due to the Dex. I've put on ten pounds from the dex in three days and urine output has been cut dramatically. This will all be gone in a week but I feel a kinship for every menstruating female out there -- bloating isn't all it's cracked up to be.
Lastly on the medical front, the nurse was VERY good with the Lovinox injection today. Almost made up for yesterday's painful shot.
Now, on the connectivity front, I shared the semi-private room today with a lovely couple from Branson, Missouri. The gentleman was about 12 days post-second transplant and he looked great. It's nice to see somebody else doing well from the treatment. He's 50 and is on the standard arm, which meant he didn't get the fractionated Melphalan (he gets one big dose in one day, versus my smaller doses for four) and he had two cycles of conslidation up-front, and he got some complications from Deep Vein Thrombosis (perhaps hearing of his travails made my prophylactic Lovinox shot go in easier). But otherwise he's doing very well. He asked where we were from, and I mentioned Los Angeles, and he knew of this blog. So hello there, fellow traveler!
I've read that it is therapeutic just to journal one's observations, and I've found it both a good cathartic release as well as a means of keeping friends and family up-to-date, and also I've found it useful as a personal reference guide to plan what's going to happen with this upcoming transplant relative to the last one (for example, eliminating Docusan and using only Senna to combat the constipation effects of Thalidomide). But the blog is more than that -- it's a way of connecting with a support group that has at its core family and close life-long friends but has expanded to include fellow travelers from around the world, some of whom are in Arkansas being treated right now partially due to reading my blog, which is wonderfully rewarding. Above all, as I have written before, my blog followers are a tangible, meaningful part of my support for getting through this disease. Not a day goes by when I don't appreciate all of you -- some post, some pray, some offer good vibes, some do all of the above -- and every bit of it is meaningful to me and to beating this disease. I love you guys!
I'm feeling pretty good, although very tired. We had an 8AM appointment (due to the holiday they wanted to front-load everybody so they could take time off) and we were back at the apartment by 10:30. I promptly slept until 2PM.
More to come tomorrow. Enjoy the rest of your Memorial Day!
All my electrolytes are in good shape, creatinine still low, and liver numbers are beginning to settle down, which is welcome news. A lot of these numbers are going to bounce around during chemo so I don't worry about them too much, although I want to make sure the creatinine is on the low end as that ensures good kidney function.
Speaking of which, my kidneys are slowing down due to the Dex. I've put on ten pounds from the dex in three days and urine output has been cut dramatically. This will all be gone in a week but I feel a kinship for every menstruating female out there -- bloating isn't all it's cracked up to be.
Lastly on the medical front, the nurse was VERY good with the Lovinox injection today. Almost made up for yesterday's painful shot.
Now, on the connectivity front, I shared the semi-private room today with a lovely couple from Branson, Missouri. The gentleman was about 12 days post-second transplant and he looked great. It's nice to see somebody else doing well from the treatment. He's 50 and is on the standard arm, which meant he didn't get the fractionated Melphalan (he gets one big dose in one day, versus my smaller doses for four) and he had two cycles of conslidation up-front, and he got some complications from Deep Vein Thrombosis (perhaps hearing of his travails made my prophylactic Lovinox shot go in easier). But otherwise he's doing very well. He asked where we were from, and I mentioned Los Angeles, and he knew of this blog. So hello there, fellow traveler!
I've read that it is therapeutic just to journal one's observations, and I've found it both a good cathartic release as well as a means of keeping friends and family up-to-date, and also I've found it useful as a personal reference guide to plan what's going to happen with this upcoming transplant relative to the last one (for example, eliminating Docusan and using only Senna to combat the constipation effects of Thalidomide). But the blog is more than that -- it's a way of connecting with a support group that has at its core family and close life-long friends but has expanded to include fellow travelers from around the world, some of whom are in Arkansas being treated right now partially due to reading my blog, which is wonderfully rewarding. Above all, as I have written before, my blog followers are a tangible, meaningful part of my support for getting through this disease. Not a day goes by when I don't appreciate all of you -- some post, some pray, some offer good vibes, some do all of the above -- and every bit of it is meaningful to me and to beating this disease. I love you guys!
I'm feeling pretty good, although very tired. We had an 8AM appointment (due to the holiday they wanted to front-load everybody so they could take time off) and we were back at the apartment by 10:30. I promptly slept until 2PM.
More to come tomorrow. Enjoy the rest of your Memorial Day!
Sunday, May 24, 2009
Transplant B, Day -3
Uneventful morning. Cold is better, cough almost gone. WBC back up to normal range (6.7) and platelets at 160, which is on the low end of normal, but normal nonetheless. Red blood counts slipping, which is unfortunate as I was hoping to keep them nice and high to keep my energy up. Hemoglobin was 12.6 yesterday and is 11.3 today. : ( If I can keep it above 11, I'll still feel myself, at least. Even above 10 would be good. We'll see what happens.
CRP is down to 6.8 from 9.8, which is good as well. Also, phosphorus went way up back into the normal range. So, essentially, other than my red blood counts everything is normal heading into this. Good good, as my friend Bill Block would say.
I reviewed my pill regimen from the first transplant and I noted that I took senna and docusan both twice a day to ensure regularity while on Thalidomide. I don't think I needed all that, so I'm going to drop it to just the senna and see what happens. Otherwise, I'm maintaining the full complement of everything from last time. I won't go on the Zofran until I need it; right now the Kytril and Emend are working well enough. It was day 3, I think, of the 4 Melphalan administrations last time that started to overwhelm that, so we'll see what happens.
I'm sluggish, and I noticed this morning with my cereal that my taste buds are gone again. It had been probably a week or so since I lost all trace of that horrible vitamin C taste in the back on my mouth. That hasn't come back yet, but there's a marked reduction in the flavor of food. This is fine...if those cells are dying, the cancer cells are dying, too.
Notably, my hair is coming back in. I spoke with Bonnie and she seemed to affirm my observation that the Melphalan didn't cause the hair to fall out -- it was the PACE chemo that did it. It's funny -- in the non-fractionated version of the Melphalan (meaning 200 mg/m2 over one day rather than 4 days of 50 mg/m2) both SF and SH assured me hair loss would occur. Meanwhile my beard has come in pretty full and my scalp is darkening again, and what was stubble is now 1/4 long in many places (or even longer in the case of one 1/2" gray hair that is gonna get tweezed if it steps outta line). It's coming in straight and dark brown, as well, which is good to see.
Now my question vis-a-vis hair is, if the fractionated Melphalan doesn't knock it out, will the dose-reduced PACE in consolidation do it? It would be terrific to have my full hair of hair back in August rather than October! How nice to spend even a moment worried about such trivial things.
I'm looking forward to seeing the next set of tumor markes. I'm not sure the Melphalan will have had time to act by tomorrow, which is when they usually run those labs. The next lab run would probably be Thursday, with results coming on Saturday or Sunday. That magical number will be the M-spike...which hopefully will be gone completely.
It's pouring rain here -- time for a catnap. I hope you and your families and friends are enjoying the long weekend!
EVENING ADDENDUM:
Taste buds almost completely gone, stomach ache as well. That means the whole GI tract is going, as it is expected to. That also means the cancer cells are dying! The nurse today was quite nice but she wasn't very good at the Lovenox shot...she went straight into the belly instead of at an angle and she didn't pinch the skin very well -- most of the time I just grimace or hiss quietly as the needle goes in -- this time I yelled "OWWW!" and couldn't help myself. :)
Had spicy Indian food tonight -- last time for a few weeks I will dare try that. And lastly, it's gonna be back to that rotten mouthwash several times a day and night. Just took all my pills and it's off to a fitful sleep...
Have a great Memorial Day everybody!
CRP is down to 6.8 from 9.8, which is good as well. Also, phosphorus went way up back into the normal range. So, essentially, other than my red blood counts everything is normal heading into this. Good good, as my friend Bill Block would say.
I reviewed my pill regimen from the first transplant and I noted that I took senna and docusan both twice a day to ensure regularity while on Thalidomide. I don't think I needed all that, so I'm going to drop it to just the senna and see what happens. Otherwise, I'm maintaining the full complement of everything from last time. I won't go on the Zofran until I need it; right now the Kytril and Emend are working well enough. It was day 3, I think, of the 4 Melphalan administrations last time that started to overwhelm that, so we'll see what happens.
I'm sluggish, and I noticed this morning with my cereal that my taste buds are gone again. It had been probably a week or so since I lost all trace of that horrible vitamin C taste in the back on my mouth. That hasn't come back yet, but there's a marked reduction in the flavor of food. This is fine...if those cells are dying, the cancer cells are dying, too.
Notably, my hair is coming back in. I spoke with Bonnie and she seemed to affirm my observation that the Melphalan didn't cause the hair to fall out -- it was the PACE chemo that did it. It's funny -- in the non-fractionated version of the Melphalan (meaning 200 mg/m2 over one day rather than 4 days of 50 mg/m2) both SF and SH assured me hair loss would occur. Meanwhile my beard has come in pretty full and my scalp is darkening again, and what was stubble is now 1/4 long in many places (or even longer in the case of one 1/2" gray hair that is gonna get tweezed if it steps outta line). It's coming in straight and dark brown, as well, which is good to see.
Now my question vis-a-vis hair is, if the fractionated Melphalan doesn't knock it out, will the dose-reduced PACE in consolidation do it? It would be terrific to have my full hair of hair back in August rather than October! How nice to spend even a moment worried about such trivial things.
I'm looking forward to seeing the next set of tumor markes. I'm not sure the Melphalan will have had time to act by tomorrow, which is when they usually run those labs. The next lab run would probably be Thursday, with results coming on Saturday or Sunday. That magical number will be the M-spike...which hopefully will be gone completely.
It's pouring rain here -- time for a catnap. I hope you and your families and friends are enjoying the long weekend!
EVENING ADDENDUM:
Taste buds almost completely gone, stomach ache as well. That means the whole GI tract is going, as it is expected to. That also means the cancer cells are dying! The nurse today was quite nice but she wasn't very good at the Lovenox shot...she went straight into the belly instead of at an angle and she didn't pinch the skin very well -- most of the time I just grimace or hiss quietly as the needle goes in -- this time I yelled "OWWW!" and couldn't help myself. :)
Had spicy Indian food tonight -- last time for a few weeks I will dare try that. And lastly, it's gonna be back to that rotten mouthwash several times a day and night. Just took all my pills and it's off to a fitful sleep...
Have a great Memorial Day everybody!
Saturday, May 23, 2009
Is the Opera over? Because we saw Heart perform tonight...
...and Ann Wilson was singing up a storm. [ba-dum dum]
There is a weekend music, food and...err....possum? belt buckle? moonshine?...festival this week. It's on the river here. A festival on the river. Care to guess the name?
So we bought tickets to the Riverfest yesterday because there were some interesting nostalgia bands playing (the B52s, Heart, etc.) and tickets were $12.50 for THE WEEKEND. Last night we saw three songs of the B52s -- enough to see that the short woman had gained about 150 pounds but was still gamely capering around, while the tall woman was unable to move. Only the weird Fred guy was his old (and I mean old) self, prancing around and blowing on a slide whistle on one song. That was about all I could take.
I let Jill drag me to the other big stage near the Clinton library to see Willie Nelson. Willie, unlike the B52s, looked exactly like I remember him in the 1980s. Which is to say, impossibly old, frail, and smelly. But the audience was very much into it. I felt like calling out for him to perform a little known Manowar* song (like Bridge of Death, or Blood of My Enemies) but there are only two people reading this blog that will chuckle at the brilliant irony of that, and there certainly would have been nobody at the Willie Nelson show that would have understood or laughed. Blood of My Enemies could have been construed as a country song about the ay-rabs, though. In fact, I can see it now...Nick screams "play Blood of My Enemies" and some huge redneck in bib overalls turning around and saying "you dumbass, that's a Toby Keith song!" or something.
Anyhow, tonight Heart performed and I have to admit, they were awesome for the four songs we saw after the Lakers game ended (go Lakers!). They did a very good cover of The Who's Love Reign O'er Me (one of my favorite songs). Although from the looks of Ann Wilson, deep dish pizza has been reigning o'er her for some time now. Still, her voice was amazing.
I looked around and realized this is probably the last outing of this sort I'll be going on for a month -- I could almost see a thick halo of germs swarming around every drunk, unclean and/or smoking person there...which is to say about 98% of the people including security. They'd had about 12 hours to get to whatever state they were in by 11PM, so good for them, but it's no place for somebody whose immune system is about to fail. I went home and practically took a bath in the antiseptic handwash I have.
So...like a movie with too much exposition before the opening credits, here at last is the medical meat of this blog entry.
I took my 10 little dexamethasone pills this morning, and went back to the 7th floor at 9AM to run the gauntlet again. Labs were drawn, and some weird things were observed. White blood cells were low -- 2.7 -- but I was told this is because I started the Levaquin. Phosphorus, of all things, was low, and I was given a list of foods to eat. Uric Acid is a bit high, not sure what that is from. CRP needed to be below 10 to proceed with the Melphalan and it was 9.8...which is about what I expected given the cold that is still lingering but as I write this almost done. Red blood counts are holding steading -- still slightly anemic but a lot better than before.
The Melphalan went down without a hitch. I got my Kytril and Emend for nausea, which as of the time of this writing are fine. I did NOT get Zofran / Ragalin this time...and reading up on Zofran there are some side effects that can elevate liver tests, so I wonder if that's what did it? We shall see. There seem to be a lot of medicines that are doing that. So I will stick to my "if I don't need it, I won't take it" program. I got Zofran in the hospital and my liver numbers were fine...oh well, we'll figure it all out.
I also got a shot of Lovanox in my belly again, which was tolerable but not something I want to repeat. Sadly I need to do so 3-4 more times. So far, I'm sluggish but otherwise feel good. Three more days of this, and I'll have hopefully dealt the death blow to the cancer.
Pill rundown:
Levaquin (antibiotic, 1/day)
Acyclovir (antiviral, 2/day)
Tamiflu (antiflu, Swine and other, 1/day)
MetaNX (buncha prescription-form B vitamins as a prophylactic for neuropathy, 2/day)
Thalidomide (poison, 2 100-mg pills each night)
Protonix/Pantoprozole (ameliorates heartburn associated with all this other stuff plus the chemo)
Kytril (antinausea, 1/day)
Emend (antinausea, 1/day)
Atavan (required to combat dex to let me sleep, 1/day)
Senna (as needed to make sure I don't get the abdominal cramping problem, 1/day based on last transplant experience)
Fluconazole (antifungal, 1/day, they put me back on it)
Amazing there's room for food with all that, but there still is, at least until the chemo clobbers my appetite (which would be fine as I'm back up to 177 pounds which is about 12 more than I want to be carrying around). So since we needed to eat, I went to do another thing I won't be able to do for the next two weeks -- sushi! We found a very, very good place called Igibon. Shockingly fresh fish, and about half the price of what a similar place in LA would be. Something to like about Little Rock!
Well, it was a full day, given that I got the liquid mustard gas this morning. I expect the next few days will be progressively less full, until about a week from now when I will probably crash outright -- but I'm hoping the elevated red counts will enable me to have a little energy even then.
That's all the news that's fit to print and then some. Good night all!
-----
*Manowar is a very obscure heavy metal band that dresses up like vikings, who take themselves wayyyy too seriously, and who had a number of decent albums in the mid 1980s but who are now widely considered a joke in the US even though they continue to be worshipped in Europe. Spinal Tap has nothing on these guys -- one of them accidentally struck the singer with a not-so-fake sword on stage in the 1980s and they had to stop the show to get the guy to a hospital. It may not be a drummer exploding spontaneously like Tap...but then it really happened.
There is a weekend music, food and...err....possum? belt buckle? moonshine?...festival this week. It's on the river here. A festival on the river. Care to guess the name?
So we bought tickets to the Riverfest yesterday because there were some interesting nostalgia bands playing (the B52s, Heart, etc.) and tickets were $12.50 for THE WEEKEND. Last night we saw three songs of the B52s -- enough to see that the short woman had gained about 150 pounds but was still gamely capering around, while the tall woman was unable to move. Only the weird Fred guy was his old (and I mean old) self, prancing around and blowing on a slide whistle on one song. That was about all I could take.
I let Jill drag me to the other big stage near the Clinton library to see Willie Nelson. Willie, unlike the B52s, looked exactly like I remember him in the 1980s. Which is to say, impossibly old, frail, and smelly. But the audience was very much into it. I felt like calling out for him to perform a little known Manowar* song (like Bridge of Death, or Blood of My Enemies) but there are only two people reading this blog that will chuckle at the brilliant irony of that, and there certainly would have been nobody at the Willie Nelson show that would have understood or laughed. Blood of My Enemies could have been construed as a country song about the ay-rabs, though. In fact, I can see it now...Nick screams "play Blood of My Enemies" and some huge redneck in bib overalls turning around and saying "you dumbass, that's a Toby Keith song!" or something.
Anyhow, tonight Heart performed and I have to admit, they were awesome for the four songs we saw after the Lakers game ended (go Lakers!). They did a very good cover of The Who's Love Reign O'er Me (one of my favorite songs). Although from the looks of Ann Wilson, deep dish pizza has been reigning o'er her for some time now. Still, her voice was amazing.
I looked around and realized this is probably the last outing of this sort I'll be going on for a month -- I could almost see a thick halo of germs swarming around every drunk, unclean and/or smoking person there...which is to say about 98% of the people including security. They'd had about 12 hours to get to whatever state they were in by 11PM, so good for them, but it's no place for somebody whose immune system is about to fail. I went home and practically took a bath in the antiseptic handwash I have.
So...like a movie with too much exposition before the opening credits, here at last is the medical meat of this blog entry.
I took my 10 little dexamethasone pills this morning, and went back to the 7th floor at 9AM to run the gauntlet again. Labs were drawn, and some weird things were observed. White blood cells were low -- 2.7 -- but I was told this is because I started the Levaquin. Phosphorus, of all things, was low, and I was given a list of foods to eat. Uric Acid is a bit high, not sure what that is from. CRP needed to be below 10 to proceed with the Melphalan and it was 9.8...which is about what I expected given the cold that is still lingering but as I write this almost done. Red blood counts are holding steading -- still slightly anemic but a lot better than before.
The Melphalan went down without a hitch. I got my Kytril and Emend for nausea, which as of the time of this writing are fine. I did NOT get Zofran / Ragalin this time...and reading up on Zofran there are some side effects that can elevate liver tests, so I wonder if that's what did it? We shall see. There seem to be a lot of medicines that are doing that. So I will stick to my "if I don't need it, I won't take it" program. I got Zofran in the hospital and my liver numbers were fine...oh well, we'll figure it all out.
I also got a shot of Lovanox in my belly again, which was tolerable but not something I want to repeat. Sadly I need to do so 3-4 more times. So far, I'm sluggish but otherwise feel good. Three more days of this, and I'll have hopefully dealt the death blow to the cancer.
Pill rundown:
Levaquin (antibiotic, 1/day)
Acyclovir (antiviral, 2/day)
Tamiflu (antiflu, Swine and other, 1/day)
MetaNX (buncha prescription-form B vitamins as a prophylactic for neuropathy, 2/day)
Thalidomide (poison, 2 100-mg pills each night)
Protonix/Pantoprozole (ameliorates heartburn associated with all this other stuff plus the chemo)
Kytril (antinausea, 1/day)
Emend (antinausea, 1/day)
Atavan (required to combat dex to let me sleep, 1/day)
Senna (as needed to make sure I don't get the abdominal cramping problem, 1/day based on last transplant experience)
Fluconazole (antifungal, 1/day, they put me back on it)
Amazing there's room for food with all that, but there still is, at least until the chemo clobbers my appetite (which would be fine as I'm back up to 177 pounds which is about 12 more than I want to be carrying around). So since we needed to eat, I went to do another thing I won't be able to do for the next two weeks -- sushi! We found a very, very good place called Igibon. Shockingly fresh fish, and about half the price of what a similar place in LA would be. Something to like about Little Rock!
Well, it was a full day, given that I got the liquid mustard gas this morning. I expect the next few days will be progressively less full, until about a week from now when I will probably crash outright -- but I'm hoping the elevated red counts will enable me to have a little energy even then.
That's all the news that's fit to print and then some. Good night all!
-----
*Manowar is a very obscure heavy metal band that dresses up like vikings, who take themselves wayyyy too seriously, and who had a number of decent albums in the mid 1980s but who are now widely considered a joke in the US even though they continue to be worshipped in Europe. Spinal Tap has nothing on these guys -- one of them accidentally struck the singer with a not-so-fake sword on stage in the 1980s and they had to stop the show to get the guy to a hospital. It may not be a drummer exploding spontaneously like Tap...but then it really happened.
Friday, May 22, 2009
Well, I *thought* that was going to be my last post of the day...
...but I have to give a "shout out" to Dr. SF, who would have been my primary stem cell transplant guy had I stayed in LA for this, and who will be the person who is in charge of my maintenance therapy for the next three years once I finish up here.
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
A final brief story before round #3 of Chemo...
This technically took place yesterday, but it deserves its own entry.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
Plasma cells and bone marrow on the day before the next transplant begins...
We went to the clinic yesterday to review all my tests and to discuss timing of beginning transplant #2, which I wanted to begin as soon as possible while at the same time being mindful of my bad cold, which had almost departed my sinuses but which was still alive and kicking in my chest. I don't want my immune system being wiped out just in time to let a little bronchial cold turn into pneumonia and a hospital visit again.
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
Thursday, May 21, 2009
Notes from Ground Zero of pop culture
Yes, I do mean Little Rock.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Tuesday, May 19, 2009
48 hours, from the ridiculous to the sublime to the grueling...
Yesterday started off very early. I was a little anxious about coming back here and diving back into things, to say nothing of bidding farewell to my kids for another month, so I didn't sleep very well on Sunday night. Bleary eyed, we headed to the airport Monday morning for a 6:35 flight.
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
Monday, May 18, 2009
Back to the grind...
Well folks, it has been a wonderful couple of weeks, treatment free (especially after being pulled of the Thalidomide), back at home with the kids, seeing a very few friends and feeling mostly normal. However, cancer waits for no man and so we are departing for the airport at the ungodly hour of 5AM for our return to Little Rock.
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
Friday, May 15, 2009
Another lab update and more good news...
It's funny...I've become so accustomed to getting daily labs from BB's clinic that it's an almost unimaginable wait to have my blood drawn on Monday the 11th and not have the information until Friday the 15th! And yet, that was the case for a lot of my data.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
Thursday, May 14, 2009
Thanksgiving in May
Just a quick little note here...I started this blog after Thanksgiving, and with any luck, by this Thanksgiving the posts will be irregular. I won't necessarily have the opportunity to tie Thanksgiving, the holiday, to the feelings I have for those who follow this blog -- especially those who are kind enough to call, email, post, etc., some of whom have even tolerated my inability to call back right away, etc.
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
Rotten little kids...or "I'm an idiot."
So what's the one thing that could drop a turd in the ol' punchbowl, as they say, of my progress?
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Monday, May 11, 2009
Numbers update...
I've been getting my blood drawn once a week (hard to adjust to not having daily counts, but I'm managing!) at Dr. SH's place, where this journey began back in November. It's funny to think how much I now know about this disease, and my treatment, and how far advanced BB's protocol is relative to the historically standard course of action...
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
Thursday, May 7, 2009
A minor update, in which your humble narrator suffers from a myriad of minor ailments...
Just a few odds and ends here. First up: the Thalidomide caused an allergic reaction on my face. It's not too bad to look at (I just look tan) but it itches quite a bit. Thankfully they have pulled me off Thalidomide for a week to see if it goes away, which is fine by me as I hate that stuff. I took it for six days, four of them with Dex, and that should be enough to keep the cancer suppressed for another couple of weeks until my next transplant.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
Saturday, May 2, 2009
Weekend update
Pinnacle Care's nurse (not Elizabeth, who is in bed with a 7-month twin pregnancy!) came by yesterday to supervise me changing my dressing and the tips on the lumens. Everything went well. The materials aren't 100% the same as what they use in the hospital but they are close enough, and I've got enough Saline and Heparin to keep the lines functional. So I can cross that concern off my list.
Not much else to report, other than the back pain is real and not going anywhere. I had thought the dex would relieve it pretty significantly but day two on dex and nothing. My hope is that it's muscle atrophy. I'm trying to do some light stuff around the house (moving wine boxes, etc, which does involve lifting things that weigh 50 pounds or so, and I'm sure that has a lot to do with it). I don't know any better way to build muscle, though, except through use.
Otherwise, tired, but feeling good. It is so uplifting to be back home and spent time with my children and as a family. We had a couple of friends over for dinner last night, ate a great meal, drank some good wine -- almost normal! It felt really, really good and I look forward to the day when I can do this without worrying about having to begin another course of treatment soon. And, of course, without the back pain.
Not much else to report, other than the back pain is real and not going anywhere. I had thought the dex would relieve it pretty significantly but day two on dex and nothing. My hope is that it's muscle atrophy. I'm trying to do some light stuff around the house (moving wine boxes, etc, which does involve lifting things that weigh 50 pounds or so, and I'm sure that has a lot to do with it). I don't know any better way to build muscle, though, except through use.
Otherwise, tired, but feeling good. It is so uplifting to be back home and spent time with my children and as a family. We had a couple of friends over for dinner last night, ate a great meal, drank some good wine -- almost normal! It felt really, really good and I look forward to the day when I can do this without worrying about having to begin another course of treatment soon. And, of course, without the back pain.
Friday, May 1, 2009
Last comments pre-poison...
It was a nice 48 hours, taking only a couple of pills neither of which would harm me.
GI tract ALMOST fully back to normal (basically takes four weeks from date of transplant, or roughly a month from Melphalan, about what I expeted). Taste has mostly returned although I do have that lingering sense of bitterness on the back of my tongue that flares up every once in a while.
My back pain has worsened. I did some lifting (boxes and children) around the house so that could have aggravated it -- my muscle tone is shot to hell so it may just be that physical therapy is needed before I can do much of anything. It starts off okay in the morning and gets worse through the day, so that is an argument against cancer / bones breaking and in favor of physical therapy being needed. But in any case it was severe enough yesterday that I had to take a couple of courses of Tylenol (including one to be able to sleep). I might even welcome the MRI in a couple of weeks time. Maybe. :)
The Thalidomide arrived yesterday, so today I start the poison. This time only 20mg of Dex versus the 40mg used in primary therapy, but I'm sure it will be enough to further wither my muscles -- which is fine, so long as it further withers the cancer, I suppose. And then this evening the Thalidomide. The dose is reduced (100mg versus 200mg) but it's every day for three weeks instead of for four days...and this has me worried about neuropathy, so I started taking MetaNx last night and will take both that and, when Jill returns from the pharmacy today, Cymbalta as well to ward off those effects.
I'm a little worried about the Cymbalta, too...it's primary use is as an anti-depressant. When I took it for four days to help with neuropathy, I didn't worry about it. But if I'm on this for three weeks, it will be a more complicated thing to wean myself off of it...for that reason I might take one every other day instead.
[10 minutes passage of time here]
Okay, so I've researched them both. MetaNx is successful in relieving neuropathy symptoms among diabetics -- it's unclear how much it prevents neuropathy other than relieves symptoms. Cymbalta is more of a temporary relief thing, and definitely a palliative rather than a preventative. That means: MetaNX yes, Cymbalta not needed. If I experience any neuropathy whatsoever, I call the clinic and they'll cut the dose, damn it!
Onward.
GI tract ALMOST fully back to normal (basically takes four weeks from date of transplant, or roughly a month from Melphalan, about what I expeted). Taste has mostly returned although I do have that lingering sense of bitterness on the back of my tongue that flares up every once in a while.
My back pain has worsened. I did some lifting (boxes and children) around the house so that could have aggravated it -- my muscle tone is shot to hell so it may just be that physical therapy is needed before I can do much of anything. It starts off okay in the morning and gets worse through the day, so that is an argument against cancer / bones breaking and in favor of physical therapy being needed. But in any case it was severe enough yesterday that I had to take a couple of courses of Tylenol (including one to be able to sleep). I might even welcome the MRI in a couple of weeks time. Maybe. :)
The Thalidomide arrived yesterday, so today I start the poison. This time only 20mg of Dex versus the 40mg used in primary therapy, but I'm sure it will be enough to further wither my muscles -- which is fine, so long as it further withers the cancer, I suppose. And then this evening the Thalidomide. The dose is reduced (100mg versus 200mg) but it's every day for three weeks instead of for four days...and this has me worried about neuropathy, so I started taking MetaNx last night and will take both that and, when Jill returns from the pharmacy today, Cymbalta as well to ward off those effects.
I'm a little worried about the Cymbalta, too...it's primary use is as an anti-depressant. When I took it for four days to help with neuropathy, I didn't worry about it. But if I'm on this for three weeks, it will be a more complicated thing to wean myself off of it...for that reason I might take one every other day instead.
[10 minutes passage of time here]
Okay, so I've researched them both. MetaNx is successful in relieving neuropathy symptoms among diabetics -- it's unclear how much it prevents neuropathy other than relieves symptoms. Cymbalta is more of a temporary relief thing, and definitely a palliative rather than a preventative. That means: MetaNX yes, Cymbalta not needed. If I experience any neuropathy whatsoever, I call the clinic and they'll cut the dose, damn it!
Onward.
Wednesday, April 29, 2009
I just flew in from Arkansas and boy...
...are my arms tired and my meds lost!
Never a dull moment. I arrived with five prescriptions to fill. I already flew out with several bottles of pills and I didn't feel like bringing an entire medicine chest with me (nor do I think I'd have been allowed to fly with 20 bottles of pills). I figured why bring a bottle of 10 Levaquin pills when I'd need to refill the prescription anyway, and since I had a fresh prescription, I would just fill it in LA.
So I got here with prescriptions for Levaquin (antibiotic), Acyclovir (antiviral), Thalidomide (poison), Dexamethasone (poison) and Heparin (syringes full o' stuff that keeps the blood from clotting in my CVL). I arrived at the airport and it was a beautiful sight...my little girl had a sign welcoming me with balloons, and my wife videotaped the arrival...I ran over and dropped my bags and threw my arms around her. It must have seemed like out of a movie to anybody watching.
We drove to a pharmacy intending to just drop off the prescriptions, knowing it would be a while before they could fill them all. That's when we learned that (a) they couldn't fill a Thalidomide prescription, which was just as well because (b) the nurse had written two prescriptions for Acyclovir and none for Thalidomide!!!, (c) they don't have Heparin, (d) I forgot that I need anti-neuropathy meds -- Cymbalta and MetaNex, which I didn't have a prescription for.
(By the way, I will be put back on Tamiflu -- still have some pills left -- when I hit the second transplant so neener neener neener to anybody sleeping in line outside RIteAid trying to score some of this during the Swine Flu 2009 tour!).
Long story short, we scrambled to get a prescription for Thalidomide from Caleb (BB's physician's assistant) and he found a Walgreen's that would ship it overnight, so that arrives tomorrow, allegedly. That solved problem A and B. Problem C was a little tougher, because three pharmacies and a doctor's office said that Heparin syringes are only released to doctors and they wouldn't give me any, and that my only option would be to go into the doctor's office daily for a line flush and be charged a full doctor's visit!!!! I put the good people at Pinnacle Care on this. Around this time I realized I'd also left the kits to clean and change the dressing on the CVL. D'oh! Pinnacle Care found a place that would deliver this and the Heparin, and needed only to get a California doctor's signature on a prescription. They hounded Dr. SH, my original hematologist, and got this taken care of and so today, I got two giant bags full of medical supplies delivered to my house! Problem C solved.
We got Caleb to write prescriptions for the Cymbalta and MetaNex, so that solved problem D. Everything is in order.
Tonight, I showed Parker my CVL and she watched as I explained everything about it and how we needed to keep it clean and make sure it didn't get clogged, and then I flushed the lines with saline and heparin. She was very impressed, noting that my CVL was "weird" and she hoped I would have it removed soon. :)
It's GREAT to be back at home -- sleeping in my own bed, spending time with my family, etc. We dropped Parker off from school today together, and picked her up together...we had a nice little lunch in between pharmacy visits...even a visit to the DMV wasn't so bad because it felt normal.
My low-grade fever / back pain / night sweats continue. I had suspected this was due to hematopoesis / stem cell engraftment and some fellow Myeloma voyagers have confirmed this, which is good to know (still not sure about the back pain but it explains the flu-like symptoms). So now, the night-sweats and fever are more of a nuisance than anything else -- I'll have to change the dressing pretty soon but hey, I've got something to do it with! :) Pinnacle Care is going to send a former nurse over to explain very carefully to me exactly how to do it, although I already know, but I figure the first time doing it myself it couldn't hurt to have somebody around who has done it 1,000 times before.
Well those are my scattered thoughts. I'm tired, still, but otherwise feel good, especially now that I know the fevers aren't anything to be panicked about. :)
Be well, all of you, and thanks for your continued support!
Never a dull moment. I arrived with five prescriptions to fill. I already flew out with several bottles of pills and I didn't feel like bringing an entire medicine chest with me (nor do I think I'd have been allowed to fly with 20 bottles of pills). I figured why bring a bottle of 10 Levaquin pills when I'd need to refill the prescription anyway, and since I had a fresh prescription, I would just fill it in LA.
So I got here with prescriptions for Levaquin (antibiotic), Acyclovir (antiviral), Thalidomide (poison), Dexamethasone (poison) and Heparin (syringes full o' stuff that keeps the blood from clotting in my CVL). I arrived at the airport and it was a beautiful sight...my little girl had a sign welcoming me with balloons, and my wife videotaped the arrival...I ran over and dropped my bags and threw my arms around her. It must have seemed like out of a movie to anybody watching.
We drove to a pharmacy intending to just drop off the prescriptions, knowing it would be a while before they could fill them all. That's when we learned that (a) they couldn't fill a Thalidomide prescription, which was just as well because (b) the nurse had written two prescriptions for Acyclovir and none for Thalidomide!!!, (c) they don't have Heparin, (d) I forgot that I need anti-neuropathy meds -- Cymbalta and MetaNex, which I didn't have a prescription for.
(By the way, I will be put back on Tamiflu -- still have some pills left -- when I hit the second transplant so neener neener neener to anybody sleeping in line outside RIteAid trying to score some of this during the Swine Flu 2009 tour!).
Long story short, we scrambled to get a prescription for Thalidomide from Caleb (BB's physician's assistant) and he found a Walgreen's that would ship it overnight, so that arrives tomorrow, allegedly. That solved problem A and B. Problem C was a little tougher, because three pharmacies and a doctor's office said that Heparin syringes are only released to doctors and they wouldn't give me any, and that my only option would be to go into the doctor's office daily for a line flush and be charged a full doctor's visit!!!! I put the good people at Pinnacle Care on this. Around this time I realized I'd also left the kits to clean and change the dressing on the CVL. D'oh! Pinnacle Care found a place that would deliver this and the Heparin, and needed only to get a California doctor's signature on a prescription. They hounded Dr. SH, my original hematologist, and got this taken care of and so today, I got two giant bags full of medical supplies delivered to my house! Problem C solved.
We got Caleb to write prescriptions for the Cymbalta and MetaNex, so that solved problem D. Everything is in order.
Tonight, I showed Parker my CVL and she watched as I explained everything about it and how we needed to keep it clean and make sure it didn't get clogged, and then I flushed the lines with saline and heparin. She was very impressed, noting that my CVL was "weird" and she hoped I would have it removed soon. :)
It's GREAT to be back at home -- sleeping in my own bed, spending time with my family, etc. We dropped Parker off from school today together, and picked her up together...we had a nice little lunch in between pharmacy visits...even a visit to the DMV wasn't so bad because it felt normal.
My low-grade fever / back pain / night sweats continue. I had suspected this was due to hematopoesis / stem cell engraftment and some fellow Myeloma voyagers have confirmed this, which is good to know (still not sure about the back pain but it explains the flu-like symptoms). So now, the night-sweats and fever are more of a nuisance than anything else -- I'll have to change the dressing pretty soon but hey, I've got something to do it with! :) Pinnacle Care is going to send a former nurse over to explain very carefully to me exactly how to do it, although I already know, but I figure the first time doing it myself it couldn't hurt to have somebody around who has done it 1,000 times before.
Well those are my scattered thoughts. I'm tired, still, but otherwise feel good, especially now that I know the fevers aren't anything to be panicked about. :)
Be well, all of you, and thanks for your continued support!
Tuesday, April 28, 2009
11th hour scare...
When one goes to either the seventh floor or to BB's office, one gets one's vitals checked. Blood pressure (sitting and standing), heart rate, blood / oxygen (measured by a sensor placed over a fingernail -- measures the efficacy of oxygen getting into the blood stream as a % up to 100 -- pretty interesting) and the fastest measurement but a critical one, temperature.
If one is running a temperature any time the immune system has been compromised, it has to be watched closely. And somewhere between 101 and 101.5, it means a trip to the emergency room to have broad-spectrum IV antibiotics applied.
When I went to the 7th floor at 8AM yesterday, my temperature was a nice 97.4. Lovely. When I got checked at BB's office at 10:45, it was likewise 97.5 or something. Great!
When I spoke with Bonnie at around 2:45 as I was getting leave BB's office, I gave her a hug and she asked if I was running a temperature because my head felt warm. I told her I'd had a checked just a couple of hours ago and it was 97 and change. We shrugged it off.
Fast forward to me on the couch at 9:30. The temp is over 100. I call Bonnie, and she advises to take two Tylenol and call her in an hour. I call her in 45 minutes instead because the temp is now 101. She tells me to watch, and if it hits 101.5, get to the ER and cancel my flight. There were tense moments and I checked the damn thing every 10 minutes. I watched it go from 101 (it's peak) to 100.6, 100.4, 99.6 and I exhaled. I dozed off on the couch and woke up 30 minutes later -- about two and a half hours from taking the Tylenol, and I was at 98.3. THANK GOD.
I got up this morning and it's 99.6. I popped two Tylenol. I'm going home today, by hook or crook. I should say last night I also resumed taking Levaquin (my antibiotic) and Acyclovir (my antiviral) both because I might as well start getting ready for bridging therapy, and because I wanted to kill off whatever what is my body causing the fever. It's very odd, considering my CRP was normal yesterday as well. My *hope* is that this, along with the back pain, is being caused by hematopoesis (growth of blood cells). Flu-like symptoms are very common, but it's unusual to experience them this far out from having the Neupogen injections. Hmm...
Anyhow, I'm gonna blow this hot-dog stand and get back to LA pronto. Will let you know what happens (cut to: me being quarantined with suspect Swine Flu cases trying to get into Arkansas from Mexico City...let's hope that doesn't happen!). :)
If one is running a temperature any time the immune system has been compromised, it has to be watched closely. And somewhere between 101 and 101.5, it means a trip to the emergency room to have broad-spectrum IV antibiotics applied.
When I went to the 7th floor at 8AM yesterday, my temperature was a nice 97.4. Lovely. When I got checked at BB's office at 10:45, it was likewise 97.5 or something. Great!
When I spoke with Bonnie at around 2:45 as I was getting leave BB's office, I gave her a hug and she asked if I was running a temperature because my head felt warm. I told her I'd had a checked just a couple of hours ago and it was 97 and change. We shrugged it off.
Fast forward to me on the couch at 9:30. The temp is over 100. I call Bonnie, and she advises to take two Tylenol and call her in an hour. I call her in 45 minutes instead because the temp is now 101. She tells me to watch, and if it hits 101.5, get to the ER and cancel my flight. There were tense moments and I checked the damn thing every 10 minutes. I watched it go from 101 (it's peak) to 100.6, 100.4, 99.6 and I exhaled. I dozed off on the couch and woke up 30 minutes later -- about two and a half hours from taking the Tylenol, and I was at 98.3. THANK GOD.
I got up this morning and it's 99.6. I popped two Tylenol. I'm going home today, by hook or crook. I should say last night I also resumed taking Levaquin (my antibiotic) and Acyclovir (my antiviral) both because I might as well start getting ready for bridging therapy, and because I wanted to kill off whatever what is my body causing the fever. It's very odd, considering my CRP was normal yesterday as well. My *hope* is that this, along with the back pain, is being caused by hematopoesis (growth of blood cells). Flu-like symptoms are very common, but it's unusual to experience them this far out from having the Neupogen injections. Hmm...
Anyhow, I'm gonna blow this hot-dog stand and get back to LA pronto. Will let you know what happens (cut to: me being quarantined with suspect Swine Flu cases trying to get into Arkansas from Mexico City...let's hope that doesn't happen!). :)
Monday, April 27, 2009
Discharged and happy about it...but not as exhilarated as I thought I'd be...
First, sorry to be AWOL here but after my appointment on Thursday, they gave me a few days off so I took advantage of it by doing absolutely nothing other than watching the NFL Draft and about 30 episodes of Battlestar Galactica, which had been highly recommended by a couple of people. It's not without it's flaws, but it's a decent enough potboiler and a good way to pass a lot of time while fatigued and when lying down on a couch for 8 hours a day is the best pastime one can think of.
I went to the ol' seventh floor this morning and had labs done. White count is around 3.6, which is enough to get on an airplane so long as I don't have 15 Swine Flu cases sitting around me. Hemoglobin climbed to 9.1 which is still quite low but it's going in the right direction. Platelets are at 79, again low, but rebounding. Good thing, too, as my resilient beard and moustache have been coming in and I've been afraid to shave. For the last five days I've had this incredibly creepy growth that looks like a 7th grader trying to impress somebody with a wannabe goatee*, and one sideburn consisting of about 20 half-inch long hairs. This morning I finally broke down and shaved -- ever so carefully so as to avoid bleeding that wouldn't stop very easily. Not a drop was spilled, I'm happy to say.
On the hair front, it is worth noting that other than the top of my head, I've not really lost any. I may have mentioned this before, but I'm grateful that I didn't lose my eyebrows (what little ones I have) or eyelashes. I really wanted to avoid that undeniably disturbing Bob-Geldof-In-The-Wall look, and was fortunate to be successful.
And as usual, my potassium was low. As I type this, I've got one balloon infuser of 250ml of some kinda Potassium juice going into my line, and I've got another one that I will swap this out for in a couple more hours. These electrolytes are needed to provide the raw materials for rebuilding blood cells, so take them I shall. Plus, I guess, eat lots of potatoes and drink lots of orange juice. Bananas, evidently, are a red herring -- not even in the top 30 foods for potassium. In fact it's possible that a red Herring might actually have more potassium than a banana. Somebody at the Banana Grower's Association must have incriminating photos of the head of the Potassium Support Foundation or whomever is involved with Banana/Potassium PR efforts.
So I met with BB today, who was quite pleased with my progress and discharged me (hurray!) to go back to LA tomorrow for about 2 and a half weeks. Part of my desire in keeping it short was to avoid "bridging therapy" which is another course of Thalidomide and Dexamethasone (more on this below). I may discuss extending my furlough by another few days, then, to catch Parker's little concert that she gives at her school on May 21st. Right now I'm scheduled to return here on the 16th but if I've gotta take the damn Thalidomide and Dex anyway, what's another week? We'll see. Part of the issue is I want to get all this treatment over and done with as soon as I can, and there will be several days of more tests prior to the second transplant, so if I don't come back until the 22nd, it might be the 30th before I start the second transplant. I can probably shave 7-10 days off that if I try hard.
I also need to take care of the CVL (central venous catheter i.e. tubes that come out of my neck) to ensure it don't get infected. This is fairly easy to do, but normally, for extended trips, they remove these. Removal, as I have likely written elsewhere, consists basically of telling you to hold your breath while they yank the six inch metal wire out of your carotid artery without so much as a hearty handshake, much less any sedation/local anesthesia. This does not sound like a barrel of laughs. Moreover, as the procedure itself takes about four seconds, I can't even justify having them knock me out for it. The thing reminds me of tying a string to a loose tooth with the other end on a doorknob and then slamming the door. This, of course, would be followed up by the inevitable re-insertion of the line when I return, and that is something that I would want sedation for (as everyplace in the world except here does it under sedation). So by keeping the thing in, I can avoid two unpleasant procedures. Sounds like a win to me. BB chuckled at me a little but then he's not the one going through it. We also bonded briefly over a dislike of taking turboprop planes, which is about 90% of the air traffic in and out of the bustling Little Rock National Airport. So he is not impervious to phobias!
BB then narrated his notes to Dr. SF, and described me as "at this time, in very good partial remission at least" (meaning I could be headed for complete remission). I knew this was the case, but hearing him dictate it was very nice. I am a little troubled by my modestly elevated liver enzymes, which were caused by antifungal meds that I've not been on in two weeks -- and I haven't had more than three or four glasses of wine/beer in the last two weeks so it's not that. BB offered his opinion that I might need to drink more! :) We'll watch these although they were very low during the month of March so I'm not sure what is going on.
I was in high spirits until they came in and started talking about bridging therapy. I was really hoping to be off pills for a couple of weeks -- especially off poison. Bridging therapy is used between transplants to ensure the cancer doesn't creep back. The time between transplants is 6 weeks to 6 months, and since BB had previously said "don't worry about bridging therapy" to me an Jill, we assumed I would need it. Certainly if I'm only going to be gone two and a half weeks, I wouldn't need it, right? Turns out: wrong. And it's extensive. Thalidomide DAILY (albeit in a reduced dose of 100mg) for the entire time I am gone. On the plus side, I guess this oughta kill the hell out of whatever cancer is left (I will also be on dex in reduced dose for four days). But between constipation and more importantly neuropathy, I really didn't want to be on Thalidomide for an extended period of time. Hopefully I won't develop anything. But this does mean that now, in addition to these pills and Levaquin and Acyclovir, I've also got to bring all my damn stool softeners and a least one anti-nausea tablet/sleeping aid plus the Metanex B6/B12 pill and the Cymbalta both for the neuropathy. I'm back to a pill breakfast and will probably be stopped at the airport to account for the thirty bottles of prescription meds I'm bringing with me. Sigh. Oh well. Better to have the pill breakfast back in LA than here.
I will also be making weekly trips to a lab out there to get blood work done. Hopefully they can draw from the Cook catheter because otherwise I am looking at those lovely 30-tube draws I love so much. Note to self: check with SH's office and make sure they do this.
Ugh. I really, really hate this stupid disease.
When I return, I'll go through three days of re-staging testing. As we speak, I am once again demanding IV sedation for the bone marrow, and I am arguing against a gene array analysis because we've reached the stage where this isn't being used for my own therapy but is being thrown in the ol' database for posterity's sake. That would be good and fine for a urine sample but I don't feel like approving another course of mining for ore deep in my hip (deeper than a regular bone marrow). I used to be quite proud of my backside and now not only has it lost all its muscle tone from the dex, I've got four dime-sized black circles from previous bone marrows and gene arrays that have been there for weeks and are going noplace. They're awful, and I don't want any more of them.
Oh well.
Putting a positive spin on all this, I'll be taking so much poison over the next few weeks that my Myeloma might even be completely gone before I get back -- at a minimum I expect the M-spike to fall even further. So...there it is.
Okay folks, as always, thanks for your support, emails, comments, prayers, positive vibes, and everything else. I will write during my furlough, but probably not daily, so don't be concerned if you don't hear that regularly from me until the middle of next month. I'm off to convince Bonnie the nurse that I don't need a gene array -- or rather, I'm off the have her convince me otherwise. :)
P.S. Bonnie told me to say no to the gene array. That clinches it!
----
*I note that what is commonly called a goatee is actually a Van Dyke (no relation). The goatee is only the tuft on the chin, whereas the Van Dyke has the noble wraparound moustache thing going on.
I went to the ol' seventh floor this morning and had labs done. White count is around 3.6, which is enough to get on an airplane so long as I don't have 15 Swine Flu cases sitting around me. Hemoglobin climbed to 9.1 which is still quite low but it's going in the right direction. Platelets are at 79, again low, but rebounding. Good thing, too, as my resilient beard and moustache have been coming in and I've been afraid to shave. For the last five days I've had this incredibly creepy growth that looks like a 7th grader trying to impress somebody with a wannabe goatee*, and one sideburn consisting of about 20 half-inch long hairs. This morning I finally broke down and shaved -- ever so carefully so as to avoid bleeding that wouldn't stop very easily. Not a drop was spilled, I'm happy to say.
On the hair front, it is worth noting that other than the top of my head, I've not really lost any. I may have mentioned this before, but I'm grateful that I didn't lose my eyebrows (what little ones I have) or eyelashes. I really wanted to avoid that undeniably disturbing Bob-Geldof-In-The-Wall look, and was fortunate to be successful.
And as usual, my potassium was low. As I type this, I've got one balloon infuser of 250ml of some kinda Potassium juice going into my line, and I've got another one that I will swap this out for in a couple more hours. These electrolytes are needed to provide the raw materials for rebuilding blood cells, so take them I shall. Plus, I guess, eat lots of potatoes and drink lots of orange juice. Bananas, evidently, are a red herring -- not even in the top 30 foods for potassium. In fact it's possible that a red Herring might actually have more potassium than a banana. Somebody at the Banana Grower's Association must have incriminating photos of the head of the Potassium Support Foundation or whomever is involved with Banana/Potassium PR efforts.
So I met with BB today, who was quite pleased with my progress and discharged me (hurray!) to go back to LA tomorrow for about 2 and a half weeks. Part of my desire in keeping it short was to avoid "bridging therapy" which is another course of Thalidomide and Dexamethasone (more on this below). I may discuss extending my furlough by another few days, then, to catch Parker's little concert that she gives at her school on May 21st. Right now I'm scheduled to return here on the 16th but if I've gotta take the damn Thalidomide and Dex anyway, what's another week? We'll see. Part of the issue is I want to get all this treatment over and done with as soon as I can, and there will be several days of more tests prior to the second transplant, so if I don't come back until the 22nd, it might be the 30th before I start the second transplant. I can probably shave 7-10 days off that if I try hard.
I also need to take care of the CVL (central venous catheter i.e. tubes that come out of my neck) to ensure it don't get infected. This is fairly easy to do, but normally, for extended trips, they remove these. Removal, as I have likely written elsewhere, consists basically of telling you to hold your breath while they yank the six inch metal wire out of your carotid artery without so much as a hearty handshake, much less any sedation/local anesthesia. This does not sound like a barrel of laughs. Moreover, as the procedure itself takes about four seconds, I can't even justify having them knock me out for it. The thing reminds me of tying a string to a loose tooth with the other end on a doorknob and then slamming the door. This, of course, would be followed up by the inevitable re-insertion of the line when I return, and that is something that I would want sedation for (as everyplace in the world except here does it under sedation). So by keeping the thing in, I can avoid two unpleasant procedures. Sounds like a win to me. BB chuckled at me a little but then he's not the one going through it. We also bonded briefly over a dislike of taking turboprop planes, which is about 90% of the air traffic in and out of the bustling Little Rock National Airport. So he is not impervious to phobias!
BB then narrated his notes to Dr. SF, and described me as "at this time, in very good partial remission at least" (meaning I could be headed for complete remission). I knew this was the case, but hearing him dictate it was very nice. I am a little troubled by my modestly elevated liver enzymes, which were caused by antifungal meds that I've not been on in two weeks -- and I haven't had more than three or four glasses of wine/beer in the last two weeks so it's not that. BB offered his opinion that I might need to drink more! :) We'll watch these although they were very low during the month of March so I'm not sure what is going on.
I was in high spirits until they came in and started talking about bridging therapy. I was really hoping to be off pills for a couple of weeks -- especially off poison. Bridging therapy is used between transplants to ensure the cancer doesn't creep back. The time between transplants is 6 weeks to 6 months, and since BB had previously said "don't worry about bridging therapy" to me an Jill, we assumed I would need it. Certainly if I'm only going to be gone two and a half weeks, I wouldn't need it, right? Turns out: wrong. And it's extensive. Thalidomide DAILY (albeit in a reduced dose of 100mg) for the entire time I am gone. On the plus side, I guess this oughta kill the hell out of whatever cancer is left (I will also be on dex in reduced dose for four days). But between constipation and more importantly neuropathy, I really didn't want to be on Thalidomide for an extended period of time. Hopefully I won't develop anything. But this does mean that now, in addition to these pills and Levaquin and Acyclovir, I've also got to bring all my damn stool softeners and a least one anti-nausea tablet/sleeping aid plus the Metanex B6/B12 pill and the Cymbalta both for the neuropathy. I'm back to a pill breakfast and will probably be stopped at the airport to account for the thirty bottles of prescription meds I'm bringing with me. Sigh. Oh well. Better to have the pill breakfast back in LA than here.
I will also be making weekly trips to a lab out there to get blood work done. Hopefully they can draw from the Cook catheter because otherwise I am looking at those lovely 30-tube draws I love so much. Note to self: check with SH's office and make sure they do this.
Ugh. I really, really hate this stupid disease.
When I return, I'll go through three days of re-staging testing. As we speak, I am once again demanding IV sedation for the bone marrow, and I am arguing against a gene array analysis because we've reached the stage where this isn't being used for my own therapy but is being thrown in the ol' database for posterity's sake. That would be good and fine for a urine sample but I don't feel like approving another course of mining for ore deep in my hip (deeper than a regular bone marrow). I used to be quite proud of my backside and now not only has it lost all its muscle tone from the dex, I've got four dime-sized black circles from previous bone marrows and gene arrays that have been there for weeks and are going noplace. They're awful, and I don't want any more of them.
Oh well.
Putting a positive spin on all this, I'll be taking so much poison over the next few weeks that my Myeloma might even be completely gone before I get back -- at a minimum I expect the M-spike to fall even further. So...there it is.
Okay folks, as always, thanks for your support, emails, comments, prayers, positive vibes, and everything else. I will write during my furlough, but probably not daily, so don't be concerned if you don't hear that regularly from me until the middle of next month. I'm off to convince Bonnie the nurse that I don't need a gene array -- or rather, I'm off the have her convince me otherwise. :)
P.S. Bonnie told me to say no to the gene array. That clinches it!
----
*I note that what is commonly called a goatee is actually a Van Dyke (no relation). The goatee is only the tuft on the chin, whereas the Van Dyke has the noble wraparound moustache thing going on.
Tuesday, April 21, 2009
Day + 12 -- bring on the germs!
Okay, I have an immune system again.
White count is up to 6.16. High enough to ward off germs, and most importantly high enough to avoid the need for another Neupogen shot!
Hemoglobin is up to 8.8. Other than after receiving blood, since beginning treatment I have not experienced rising Hemoglobin. Could it be that my new marrow is actually making red blood again, and there aren't enough malignant plasma cells to get in the way? Time will tell.
Platelets still languishing at 31, but without the dreaded Neupogen shot to stunt their rebound, they should start springing back up.
All my chemistry is good, although Potassium slipped a bit so I am back on the potato diet this evening, and probably tomorrow. They even gave me a day off from any kind of infusion -- I will go back Thursday, Saturday and then early Monday AM so BB has the most recent lab data to work from during my discharge appointment with him at 10:30.
I also got a partial update of tumor markers. IgG is down to 1430 from 1600 a couple of days before. Getting close to normal ranges! It will all depend on the M spike, of course, which is unfortunately still in the lab. Lambda free light chains are squarely normal. Beta-2 Microglobulin, which is something that is normal until Myeloma causes it to rise to high levels, has fallen from 2.4 (versus normal range of 0-2) to 1.3 from the start of treatment.
I won't be happy until that M-spike is totally gone, and my guess is right now it is probably at 1.1 or so. But I am getting very close to being in what would clinically be defined as "very good partial remission." That's not the gold standard but it is a damn good start!
White count is up to 6.16. High enough to ward off germs, and most importantly high enough to avoid the need for another Neupogen shot!
Hemoglobin is up to 8.8. Other than after receiving blood, since beginning treatment I have not experienced rising Hemoglobin. Could it be that my new marrow is actually making red blood again, and there aren't enough malignant plasma cells to get in the way? Time will tell.
Platelets still languishing at 31, but without the dreaded Neupogen shot to stunt their rebound, they should start springing back up.
All my chemistry is good, although Potassium slipped a bit so I am back on the potato diet this evening, and probably tomorrow. They even gave me a day off from any kind of infusion -- I will go back Thursday, Saturday and then early Monday AM so BB has the most recent lab data to work from during my discharge appointment with him at 10:30.
I also got a partial update of tumor markers. IgG is down to 1430 from 1600 a couple of days before. Getting close to normal ranges! It will all depend on the M spike, of course, which is unfortunately still in the lab. Lambda free light chains are squarely normal. Beta-2 Microglobulin, which is something that is normal until Myeloma causes it to rise to high levels, has fallen from 2.4 (versus normal range of 0-2) to 1.3 from the start of treatment.
I won't be happy until that M-spike is totally gone, and my guess is right now it is probably at 1.1 or so. But I am getting very close to being in what would clinically be defined as "very good partial remission." That's not the gold standard but it is a damn good start!
Monday, April 20, 2009
Day + 11 -- and a break in the cloud cover coming up!
Hello folks. Jill returned from LA (and the kids) last night and my brother Pete departed for his home in Chicago. The water brigade of friends and family that have helped out by visiting so Jill can get back to the kids every now and then has been so important to us and we are very, very appreciative!
I barely slept last night -- don't know why but I'm exhausted. The back aches, and I have lingering GI issues any time I try to eat something with so much as a gram of fiber, so I'm sticking to all the food that is bad for you. Hello pasta, my old friend -- it's time to eat you again.
My blood counts have turned the corner. White blood cells bounced up to 2.1 today -- which means I am technically probably no longer neutropenic, although I am going to continue on as though I am for another day or so. Platelets are still only 39, but that's an improvement. Their recovery is inhibited by the growth factor that I continue to receive via burning injection every day to stimulate white blood cell growth. If my white remain above 2 tomorrow (and they certainly should) then tomorrow's Neupogen shot should be the last for this cycle. My poor arms are so bruised (that's what happens when you can't clot -- a simple needle prick is an invitation for internal bleeding) that I look like a junkie, so a respite is very welcome.
Red blood counts remain low -- hemoglobin is flat at 8.4. But I have come to live with this, and realize that it will take a long time for these to recover. CRP is down today from 26 to 17 -- still a little high but to be expected given hematopoesis and the fact that it came down is a very good sign. No infections, looks like! Potassium was on the low end of normal but they gave me a take-home balloon infuser to prop it up. Magnesium is fine. Liver is still irritated from some combination of the anti-fungal meds that I stopped eight days ago and the overall protocol, but the numbers are only a little high.
Most importantly, I have a discharge appointment with BB on Monday at 10:30. I anticipate he'll give me a solid two weeks to go home and see the kids before returning here for transplant #2. This is happening none to soon -- we need to get home to see the kids for both their sake and ours. Jill will go back the day after tomorrow, assuming I am in a position to care for myself, and then I'll be here by myself for a few days before returning, hopefully, Tuesday.
Even better, I am told that my cancer markers will continue to go down -- the already low numbers are not a plateau. There's some chance that I will be in complete remission after the first transplant, and if not, it looks likely that it will be very good partial remission. The second transplant, hopefully, will get us the rest of the way.
Lastly, they have told me that I can keep my Cook catheter in place, which is good because it's two less painful procedures that I need to endure (removal, which is done without any sedation or local anesthetic, and installation of a new one upon return). I just need to flush it daily, which I've learned to do.
This is a horrible disease, and the treatment (particularly the one I chose) is not very pleasant -- but things are going as well as we could have hoped. I am absolutely confident that all of your support, prayers, positive vibes and thoughts have an impact on this -- thank you all very, very much.
More news tomorrow.
I barely slept last night -- don't know why but I'm exhausted. The back aches, and I have lingering GI issues any time I try to eat something with so much as a gram of fiber, so I'm sticking to all the food that is bad for you. Hello pasta, my old friend -- it's time to eat you again.
My blood counts have turned the corner. White blood cells bounced up to 2.1 today -- which means I am technically probably no longer neutropenic, although I am going to continue on as though I am for another day or so. Platelets are still only 39, but that's an improvement. Their recovery is inhibited by the growth factor that I continue to receive via burning injection every day to stimulate white blood cell growth. If my white remain above 2 tomorrow (and they certainly should) then tomorrow's Neupogen shot should be the last for this cycle. My poor arms are so bruised (that's what happens when you can't clot -- a simple needle prick is an invitation for internal bleeding) that I look like a junkie, so a respite is very welcome.
Red blood counts remain low -- hemoglobin is flat at 8.4. But I have come to live with this, and realize that it will take a long time for these to recover. CRP is down today from 26 to 17 -- still a little high but to be expected given hematopoesis and the fact that it came down is a very good sign. No infections, looks like! Potassium was on the low end of normal but they gave me a take-home balloon infuser to prop it up. Magnesium is fine. Liver is still irritated from some combination of the anti-fungal meds that I stopped eight days ago and the overall protocol, but the numbers are only a little high.
Most importantly, I have a discharge appointment with BB on Monday at 10:30. I anticipate he'll give me a solid two weeks to go home and see the kids before returning here for transplant #2. This is happening none to soon -- we need to get home to see the kids for both their sake and ours. Jill will go back the day after tomorrow, assuming I am in a position to care for myself, and then I'll be here by myself for a few days before returning, hopefully, Tuesday.
Even better, I am told that my cancer markers will continue to go down -- the already low numbers are not a plateau. There's some chance that I will be in complete remission after the first transplant, and if not, it looks likely that it will be very good partial remission. The second transplant, hopefully, will get us the rest of the way.
Lastly, they have told me that I can keep my Cook catheter in place, which is good because it's two less painful procedures that I need to endure (removal, which is done without any sedation or local anesthetic, and installation of a new one upon return). I just need to flush it daily, which I've learned to do.
This is a horrible disease, and the treatment (particularly the one I chose) is not very pleasant -- but things are going as well as we could have hoped. I am absolutely confident that all of your support, prayers, positive vibes and thoughts have an impact on this -- thank you all very, very much.
More news tomorrow.
Sunday, April 19, 2009
Day + 10
Well, I tip my hat to my fellow sufferer that made it out of the hospital in 10 days. I didn't quite get there, but that's okay!
Today's tale of the tape: white count at 0.5, hemoglobin at 8.4, platelets at 16 (I needed another bag today), CRP at 28, and potassium and magnesium in normal levels. That translated to a quick trip to the hospital, all things considered (the platelets infuse in about 10 minutes).
The Neupogen injections are getting old -- and my back and head hurt from them, but this is temporary. Hopefully by Wednesday I will have an immune system again, and then we can see when I can get back to LA for a couple of weeks between transplants.
More news as it develops.
Today's tale of the tape: white count at 0.5, hemoglobin at 8.4, platelets at 16 (I needed another bag today), CRP at 28, and potassium and magnesium in normal levels. That translated to a quick trip to the hospital, all things considered (the platelets infuse in about 10 minutes).
The Neupogen injections are getting old -- and my back and head hurt from them, but this is temporary. Hopefully by Wednesday I will have an immune system again, and then we can see when I can get back to LA for a couple of weeks between transplants.
More news as it develops.
Saturday, April 18, 2009
Day + 9 -- counts up, cancer down!
I am beginning to feel the inevitable fatigue that comes from low red blood, and I'm getting the side-effects of the neupogen -- headache and back pain, most noticeably, and as soon as I brag about the resilience of my GI tract, there's backsliding there as well. But frankly, I weathered this pretty well so I'm not complaining -- really just making notes so I'll be able to prepare for the second transplant in a few weeks.
The second transplant will be important, because I definitely want complete remission and I'm not there yet...but the numbers thus far are promising. First, my white blood cells are up to 0.1...very low, but certainly higher than 0.02. Platelets were at 22 today, again very low but up from 16. Hemoglobin (the key marker for red blood) is down to 8.2 from 8.5 and 9.1 the day before, which explains my fatigue. They asked if I wanted blood, but I said not yet -- keeping the WHO warnings in the back of my mind, I figure why take more than I absolutely need. They will infuse if it falls below 8, though, which it probably will. Potassium was borderline so I had to promise to eat a baked potato today (a very good source) and we'll see tomorrow if I need an infuser of it. Lastly, CRP is about 20 now, and if that increases again (as it likely will) they will give me an IV antibiotic tomorrow as well.
So tomorrow I may be full of additives and that could make for a long day at the hospital. Oh well.
I asked for my most recent tumor markers as of last Thursday (it takes two days to process the results). These are from when I hit the floor with the white count of 0.02, so these likely represent (I am guessing, anyhow) as low as the numbers will get from this transplant. I could be mistaken but I'm trying to be conservative, so I'm sticking with the presumption that this is the new "plateau" until the next phase of treatment...assuming it doesn't come back:
* M spike is 1.3 now (grams per deciliter of blood). Down from 1.6 a few days earlier, from 4 at both diagnosis and pre-transplant, and from 8 at the peak.
* Lambda free light chains crept up from 0 to 1.8...still squarely normal but I am reminded now that the light chains rise as counts recover so I'm not going to focus on this metric any longer.
* IgG down to 1800 from 2100 a few days ago, 6000 pre transplant and as high as 11000 before treatment. Normal is 700 to 1400.
After the second transplant, I have to imagine IgG will be normal and the M spike will be next to nothing -- still not good enough as I want it to be zero...but things are moving in the right direction.
Thanks as always for your comments -- it's great to hear from you all!
The second transplant will be important, because I definitely want complete remission and I'm not there yet...but the numbers thus far are promising. First, my white blood cells are up to 0.1...very low, but certainly higher than 0.02. Platelets were at 22 today, again very low but up from 16. Hemoglobin (the key marker for red blood) is down to 8.2 from 8.5 and 9.1 the day before, which explains my fatigue. They asked if I wanted blood, but I said not yet -- keeping the WHO warnings in the back of my mind, I figure why take more than I absolutely need. They will infuse if it falls below 8, though, which it probably will. Potassium was borderline so I had to promise to eat a baked potato today (a very good source) and we'll see tomorrow if I need an infuser of it. Lastly, CRP is about 20 now, and if that increases again (as it likely will) they will give me an IV antibiotic tomorrow as well.
So tomorrow I may be full of additives and that could make for a long day at the hospital. Oh well.
I asked for my most recent tumor markers as of last Thursday (it takes two days to process the results). These are from when I hit the floor with the white count of 0.02, so these likely represent (I am guessing, anyhow) as low as the numbers will get from this transplant. I could be mistaken but I'm trying to be conservative, so I'm sticking with the presumption that this is the new "plateau" until the next phase of treatment...assuming it doesn't come back:
* M spike is 1.3 now (grams per deciliter of blood). Down from 1.6 a few days earlier, from 4 at both diagnosis and pre-transplant, and from 8 at the peak.
* Lambda free light chains crept up from 0 to 1.8...still squarely normal but I am reminded now that the light chains rise as counts recover so I'm not going to focus on this metric any longer.
* IgG down to 1800 from 2100 a few days ago, 6000 pre transplant and as high as 11000 before treatment. Normal is 700 to 1400.
After the second transplant, I have to imagine IgG will be normal and the M spike will be next to nothing -- still not good enough as I want it to be zero...but things are moving in the right direction.
Thanks as always for your comments -- it's great to hear from you all!
Friday, April 17, 2009
Day +8
Have hit the bottom and am ever so slightly creeping back up now. White count today was 0.03...very, very low but higher, after all, than 0.02. Platelets were only 16 so they gave me more. They are getting ready to give me a unit of blood, although I'm not yet in need of it. Otherwise chemistry looks good. CRP is 11.6, which is where it was yesterday...we anticipate a rise in this and a low-grade fever as blood counts go up. Hopefully in 3-4 days I'll be back to normal. Need to get there in two days to tie my fellow Myeloma patient blog reader who made it in 10! :)
Feeling pretty good other than just very tired. No more GI issues (actually been about three days), thank God! Now my only side effect is exhaustion -- and I can manage with that just fine.
Be well everyone!
Feeling pretty good other than just very tired. No more GI issues (actually been about three days), thank God! Now my only side effect is exhaustion -- and I can manage with that just fine.
Be well everyone!
Thursday, April 16, 2009
Day +7
White counts remained at 0.02. Platelets fell to 12(!!) so they infused me with some more to bring it up north of 20. I guess that makes a difference at some level (honestly at 12 I was afraid I was going to get internal bleeding in my backside just from sitting down on something) but it still seems very low. All the other chemistry numbers are pretty good, although the liver is still irritated from the Fluconazole that I took ten days ago (or from chemo, perhaps). CRP crept up to 11 but that's still quite low, and I have no fever or other indications of anything wrong, so everything is in good shape. I expect CRP to increase due to hematopoesis (per BB's observation last time) so I won't be surprised if that comes up. Meanwhile, hopefully my white counts and platelets will start to recover soon -- I'm getting tired of the neupogen shots, which burn quite a bit (though they hurt less in the arm than in the belly...good to know for next transplant).
I feel pretty good, all things considered, although I felt better yesterday with the news on the tumor markers. So in this little controlled experiment, when all the labs are the same from day one to day two and the only independent variable is news about the treatment working, it's proof positive that good news makes a difference. :)
Jill is getting to see the kids tomorrow, which is great. My brother Pete is coming to relieve her for the weekend -- I'm afraid he's in for an (even more) boring time this weekend as I can't leave the apartment, basically. I'm sure we'll manage.
I feel pretty good, all things considered, although I felt better yesterday with the news on the tumor markers. So in this little controlled experiment, when all the labs are the same from day one to day two and the only independent variable is news about the treatment working, it's proof positive that good news makes a difference. :)
Jill is getting to see the kids tomorrow, which is great. My brother Pete is coming to relieve her for the weekend -- I'm afraid he's in for an (even more) boring time this weekend as I can't leave the apartment, basically. I'm sure we'll manage.
Wednesday, April 15, 2009
Day +6...I hit the wall...and so does cancer!
So first, the counts: whites are at 0.02. Lowest I've ever been. Literally, I think two white cells keeping each other company. Platelets are at 27 (normal is 150 to 500). They will likely give me a transfusion of platelets tomorrow so I don't end up like one of the Romanov kids. They are also preparing to give me more blood (take THAT World Health Organization) in the event the hemoglobin falls much lower.
Surprisingly, I don't feel horrible...although some of this is psychological rather than physical. All of my labs are where they should be...CRP (the tell-all measure of impending infection) is normal, which is rare for somebody with no immune system. So I pressed my luck and asked the APN for the tumor markers. She came back ten minutes later and said "I think you'll be in the mood for a Disney parade." And so I am.
There are three markers that are looked at:
* M-spike measures the presence of the protein in my blood that is manufactured as a result of the myeloma cells. It is this M-spike that was observed when I was first diagnosed. The M-spike at diagnosis was around 4, and it increased to around 8 right before my treatment began. As of two days ago, it is at 1.6! Obviously, we want this to be zero, but it will continue to fall and this is a very good sign.
* Lamba free light chain is a metric of tumor activity, although mine has never been all that high -- except as a result of therapy (BB noted the treatment causes a spike which later falls). At any rate, normal is below 1. Mine was around 3, if memory serves, and went up to as high as 50 or so. It is now effectively ZERO.
* IgG is a measure of the antibodies created by both legitimate plasma cells, and by the myeloma. Normal is 700 to 1400. Mine was as high as 11000 before treatment. After induction they fell to 6500. Three days ago, they were at 2100, and still falling.
Bottom line: the therapy is working. I am not in remission yet, but the cancer has been kicked square in the face.
Onward!
Surprisingly, I don't feel horrible...although some of this is psychological rather than physical. All of my labs are where they should be...CRP (the tell-all measure of impending infection) is normal, which is rare for somebody with no immune system. So I pressed my luck and asked the APN for the tumor markers. She came back ten minutes later and said "I think you'll be in the mood for a Disney parade." And so I am.
There are three markers that are looked at:
* M-spike measures the presence of the protein in my blood that is manufactured as a result of the myeloma cells. It is this M-spike that was observed when I was first diagnosed. The M-spike at diagnosis was around 4, and it increased to around 8 right before my treatment began. As of two days ago, it is at 1.6! Obviously, we want this to be zero, but it will continue to fall and this is a very good sign.
* Lamba free light chain is a metric of tumor activity, although mine has never been all that high -- except as a result of therapy (BB noted the treatment causes a spike which later falls). At any rate, normal is below 1. Mine was around 3, if memory serves, and went up to as high as 50 or so. It is now effectively ZERO.
* IgG is a measure of the antibodies created by both legitimate plasma cells, and by the myeloma. Normal is 700 to 1400. Mine was as high as 11000 before treatment. After induction they fell to 6500. Three days ago, they were at 2100, and still falling.
Bottom line: the therapy is working. I am not in remission yet, but the cancer has been kicked square in the face.
Onward!
Tuesday, April 14, 2009
Day +5...and some thoughts on positive thinking
First, the mundane: the APN was right on the money. White cells cratered today...count is at 0.2. I think that means there are 20 white cells left in my blood. Like the Jedi knights, hunted to extinction...like the last stragglers of Arthur's knights searching for the grail...like the sordid characters in Rick's bar in Casablanca...these last white cells are hanging out on some street corner with their last pack of smokes while the rest of my bloodstream lies in a shambles around them.
Anyhow...enough of that. All the other labs look good and things are heading in the right direction. Platelets are only 40...which means if I so much as look at something the wrong way I'll bleed out. So the next few days are important ones, and I'm going to lay low and hope I can stay away from any kind of infection. So far, so good.
Now...I have been reflecting a bit on the nature of my attitude in this struggle...and I did want to make an observation or two. I'm not making myself out to be a heroic figure or anything like that...and it's funny since in my past life I had a very cynical sense of humor (okay, okay, it comes out here as well) and was anything but a pollyanna. But I was struck my something about my approach that is probably worth commenting on for my own reflection if nothing else.
Somebody who also keeps a blog on cancer was kind enough to reach out to me a couple of days ago, and I looked at that person's blog. Now I am NOT passing judgment on this person in any way, nor am I taking ANYTHING away from their struggle, so please don't take this that way. But two of the last three entries focused on secondary cancer from treatments used in chemotherapy, and on the dangers of receiving blood. It's hard to say where "cautionary" ends and "alarmist" begins, but they seemed pretty dire.
I choose differently. Yes, there are risks to open-ended use of some chemo (in my induction, Etoposide and Cyclophosphomide are both associated with long-term acute myelogenous leukemia, as early blog readers will know from my research on them). However, these risks are small -- 2% in the population at large, and that includes much larger doses of these two drugs than I received. Yes, the world health organization has sounded alarms about getting too many blood transfusions...but the fact is blood is pretty essential to well-being and if you don't have any blood, you feel like you've got eight toes in the grave, believe me. Getting a transfusion when one's red counts are very low is a sensible thing.
What I'm trying to say is that my approach has been to ask questions, make sure my providers know what they are doing and that they have considered these issues, and then place my confidence in the protocol. Dwelling on everything that can go wrong is defeatist and works against the body's efforts to heal. I'm not going to don Tibetan robes and move into some ashram someplace, but I do believe that the mind and body are part of the same system and that having confidence in the treatment is essential to it working. Frankly, I think part of the reason I contracted cancer in the first place is that I was cavalier about my well-being. No more. I choose to live. I choose to beat cancer. I choose to have confidence in my protocol, and I choose not to dwell on every little thing that can go wrong. This is not the same thing as choosing ignorance. It is, instead, a categorical rejection of defeatism and a categorical rejection of the little demons of doubt that trip us up.
Okay. Enough philosophizing. I'll try to make sure tomorrow gets some good inbred jokes or something. :)
P.S. Forgot to mention, the stink on floor 7 is HORRIBLE. I only really started noticing it the last three days or so, but it's that smell of the preservative in the transplant bags...like rotten beef boullion...sickly sweet...ugh. I chew gum to manage through it. Yuck.
Anyhow...enough of that. All the other labs look good and things are heading in the right direction. Platelets are only 40...which means if I so much as look at something the wrong way I'll bleed out. So the next few days are important ones, and I'm going to lay low and hope I can stay away from any kind of infection. So far, so good.
Now...I have been reflecting a bit on the nature of my attitude in this struggle...and I did want to make an observation or two. I'm not making myself out to be a heroic figure or anything like that...and it's funny since in my past life I had a very cynical sense of humor (okay, okay, it comes out here as well) and was anything but a pollyanna. But I was struck my something about my approach that is probably worth commenting on for my own reflection if nothing else.
Somebody who also keeps a blog on cancer was kind enough to reach out to me a couple of days ago, and I looked at that person's blog. Now I am NOT passing judgment on this person in any way, nor am I taking ANYTHING away from their struggle, so please don't take this that way. But two of the last three entries focused on secondary cancer from treatments used in chemotherapy, and on the dangers of receiving blood. It's hard to say where "cautionary" ends and "alarmist" begins, but they seemed pretty dire.
I choose differently. Yes, there are risks to open-ended use of some chemo (in my induction, Etoposide and Cyclophosphomide are both associated with long-term acute myelogenous leukemia, as early blog readers will know from my research on them). However, these risks are small -- 2% in the population at large, and that includes much larger doses of these two drugs than I received. Yes, the world health organization has sounded alarms about getting too many blood transfusions...but the fact is blood is pretty essential to well-being and if you don't have any blood, you feel like you've got eight toes in the grave, believe me. Getting a transfusion when one's red counts are very low is a sensible thing.
What I'm trying to say is that my approach has been to ask questions, make sure my providers know what they are doing and that they have considered these issues, and then place my confidence in the protocol. Dwelling on everything that can go wrong is defeatist and works against the body's efforts to heal. I'm not going to don Tibetan robes and move into some ashram someplace, but I do believe that the mind and body are part of the same system and that having confidence in the treatment is essential to it working. Frankly, I think part of the reason I contracted cancer in the first place is that I was cavalier about my well-being. No more. I choose to live. I choose to beat cancer. I choose to have confidence in my protocol, and I choose not to dwell on every little thing that can go wrong. This is not the same thing as choosing ignorance. It is, instead, a categorical rejection of defeatism and a categorical rejection of the little demons of doubt that trip us up.
Okay. Enough philosophizing. I'll try to make sure tomorrow gets some good inbred jokes or something. :)
P.S. Forgot to mention, the stink on floor 7 is HORRIBLE. I only really started noticing it the last three days or so, but it's that smell of the preservative in the transplant bags...like rotten beef boullion...sickly sweet...ugh. I chew gum to manage through it. Yuck.
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