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!
Wednesday, April 15, 2009
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.
Monday, April 13, 2009
Day + 4: I am strong like bull...or am I?
So today was a good day. Other than being exhausted and continued GI issues, I felt pretty good.
They took labs. It was peripheral (arm) blood draw day, which I vetoed. I'm just tired of being poked, prodded, stabbed, etc. They relented immediately and took blood from the central line...which of course makes me think they don't REALLY need to take it from the arm. Anyhow...
My labs come back. My white count is up! 2.6! Not even neutropenic! My platelets are low, at 70, but all the chemistry is normal. Could I really have been neutropenic for one day? Am I really rebounding? Am I, as some crazed Turkish wrestler would say, "strong like bull?"
No, says the APN (which somehow stands for "merciless witch", as well as "head nurse in charge"). She claims the white count is the result of the growth factor, and tomorrow I will come crashing down. Oh well. It was a pleasant 5 minute dream. I'm in for another 10 days of neutropenia, she says, and who am I to argue?
Still, I'll try to break that record.
They took labs. It was peripheral (arm) blood draw day, which I vetoed. I'm just tired of being poked, prodded, stabbed, etc. They relented immediately and took blood from the central line...which of course makes me think they don't REALLY need to take it from the arm. Anyhow...
My labs come back. My white count is up! 2.6! Not even neutropenic! My platelets are low, at 70, but all the chemistry is normal. Could I really have been neutropenic for one day? Am I really rebounding? Am I, as some crazed Turkish wrestler would say, "strong like bull?"
No, says the APN (which somehow stands for "merciless witch", as well as "head nurse in charge"). She claims the white count is the result of the growth factor, and tomorrow I will come crashing down. Oh well. It was a pleasant 5 minute dream. I'm in for another 10 days of neutropenia, she says, and who am I to argue?
Still, I'll try to break that record.
Recap of non-Easterly feelings
Call me what you will, but yesterday was no day to mock my fellow Man.
Today, however, is. I'm overdue for a bit of local color.
First, my physical state. Not bad, all things considered. I'm on good anti-nausea meds. I don't have the mouth sores yet (and I am rinsing religiously with that awful Biotene stuff that supposedly keeps my mouth full of good bacteria). I got a Neupogen (growth factor) shot yesterday, which they gave me in the sub-cutaneous fat of my arm which was a bit less painful than the belly, and this is going to create flu-like effects (huzzah!) plus bone pain (double huzzah!) as my poor mangled marrow is jostled to make white cells. So be it.
That leaves me with one remaining condition. And here, I am reminded of a statistical observation that came to light when I was in high school. It seems they compared SAT scores among children who regularly watched M*A*S*H versus those who regularly watched The Dukes of Hazzard, and there was something like a 200 point differential. Correlation or causality, who can say, but either way, I was a M*A*S*H kid.
Now there are a number of ways I can go with this...considering I am in the physical equivalent of Hazzard County as I type this. But where I'm going is, sadly, back to the GI tract. I remember the butt of almost every joke in M*A*S*H was either "Frank Burns" or "dysentery." At 14, I'm sure I had no idea what dysentery was, but they sure used it a lot. It was their go-to line. Like Carrottop pulling a rubber chicken out of the crate, like Don Rickles calling somebody "hockeypuck," Larry Gelbart and the M*A*S*H writers went straight to the dysentery gag.
And so here I am. The one impact of chemo that I can't avoid is this horrible persistent diarrhea. The awful constipation that hospitalized me after induction is but a happy memory...like distant visions of playing Candyland as a child. Anyhow, I'm wolfing down Immodium and toughing it out. Honestly, it's pretty manageable, albeit not much fun.
But enough about such unpleasantries, and on to my fellow man. As I write this, the US has just emerged victorious from a skirmish with Somali pirates, who seized a freighter full of medical and famine aid supplies and held the US captain hostage for a couple of days until he was freed by a team of Navy SEALS. It's fairly big news.
And it did not escape the watchful eye of my nurse in the hospital -- a haggard woman with a fondness for copious amounts of southern cooking and the unmistakable steely-eyed glare of a carnival worker. As she was methodically swabbing my lumens with alcohol after taking blood yesterday (counting under her breath as she cleaned) she gave me her thoughts on US policy. "I tell ya what what oughta do with them pirates." There was a pregnant pause, full of anticipation, as she looked at me with a lazy eye. "BLODEMUP." A one-word policy statement, worthy of Von Clausewitz.
I feel halfway decent this morning...got a fairly good night's sleep so other than general exhaustion, so far, so good. Be well, everybody.
Today, however, is. I'm overdue for a bit of local color.
First, my physical state. Not bad, all things considered. I'm on good anti-nausea meds. I don't have the mouth sores yet (and I am rinsing religiously with that awful Biotene stuff that supposedly keeps my mouth full of good bacteria). I got a Neupogen (growth factor) shot yesterday, which they gave me in the sub-cutaneous fat of my arm which was a bit less painful than the belly, and this is going to create flu-like effects (huzzah!) plus bone pain (double huzzah!) as my poor mangled marrow is jostled to make white cells. So be it.
That leaves me with one remaining condition. And here, I am reminded of a statistical observation that came to light when I was in high school. It seems they compared SAT scores among children who regularly watched M*A*S*H versus those who regularly watched The Dukes of Hazzard, and there was something like a 200 point differential. Correlation or causality, who can say, but either way, I was a M*A*S*H kid.
Now there are a number of ways I can go with this...considering I am in the physical equivalent of Hazzard County as I type this. But where I'm going is, sadly, back to the GI tract. I remember the butt of almost every joke in M*A*S*H was either "Frank Burns" or "dysentery." At 14, I'm sure I had no idea what dysentery was, but they sure used it a lot. It was their go-to line. Like Carrottop pulling a rubber chicken out of the crate, like Don Rickles calling somebody "hockeypuck," Larry Gelbart and the M*A*S*H writers went straight to the dysentery gag.
And so here I am. The one impact of chemo that I can't avoid is this horrible persistent diarrhea. The awful constipation that hospitalized me after induction is but a happy memory...like distant visions of playing Candyland as a child. Anyhow, I'm wolfing down Immodium and toughing it out. Honestly, it's pretty manageable, albeit not much fun.
But enough about such unpleasantries, and on to my fellow man. As I write this, the US has just emerged victorious from a skirmish with Somali pirates, who seized a freighter full of medical and famine aid supplies and held the US captain hostage for a couple of days until he was freed by a team of Navy SEALS. It's fairly big news.
And it did not escape the watchful eye of my nurse in the hospital -- a haggard woman with a fondness for copious amounts of southern cooking and the unmistakable steely-eyed glare of a carnival worker. As she was methodically swabbing my lumens with alcohol after taking blood yesterday (counting under her breath as she cleaned) she gave me her thoughts on US policy. "I tell ya what what oughta do with them pirates." There was a pregnant pause, full of anticipation, as she looked at me with a lazy eye. "BLODEMUP." A one-word policy statement, worthy of Von Clausewitz.
I feel halfway decent this morning...got a fairly good night's sleep so other than general exhaustion, so far, so good. Be well, everybody.
Sunday, April 12, 2009
Day +3 / Happy Easter!
Yesterday was a non-event, marked by exhaustion and depleting white cells (about 1.3...not quite neutropenic). We waited over two hours for labs but other than tedium, things were okay.
Today is more of the same...total exhaustion. The weather is horribly gloomy here...black skies, thunderstorms...hardly Easter-like. I'm sure I am now neutropenic and we'll head to the hospital shortly for the daily blood-letting and whatever alchemical remedies they want to apply to me (my money is on more potassium and maybe some magnesium).
Cabin fever is becoming a concern, but otherwise hanging in. We miss the kids today even more than usual. But each day is closer to the end. The back pain is gone, so I know the tumor activity in my spine is reduced or eliminated. I'm eager to see my IgG and M-spike in a couple of weeks...
Anyhow, more news as it merits. Thanks again for the encouragement, all!
Today is more of the same...total exhaustion. The weather is horribly gloomy here...black skies, thunderstorms...hardly Easter-like. I'm sure I am now neutropenic and we'll head to the hospital shortly for the daily blood-letting and whatever alchemical remedies they want to apply to me (my money is on more potassium and maybe some magnesium).
Cabin fever is becoming a concern, but otherwise hanging in. We miss the kids today even more than usual. But each day is closer to the end. The back pain is gone, so I know the tumor activity in my spine is reduced or eliminated. I'm eager to see my IgG and M-spike in a couple of weeks...
Anyhow, more news as it merits. Thanks again for the encouragement, all!
Friday, April 10, 2009
Day +1
Exhausted, so this will be short.
White counts dropped from around 6.7 to around 2.8 today, expect neutropenia to set in tomorrow. Platelets falling as expected, too. Low on Potassium so they gave me two balloons worth of that. Starting Flagile to ward off some kind of GI thing that's going around. Gave us an antibiotic balloon to use in case I develop a fever.
Very, very tired. Just going to try to ride out the next week and hopefully I won't contract anything.
White counts dropped from around 6.7 to around 2.8 today, expect neutropenia to set in tomorrow. Platelets falling as expected, too. Low on Potassium so they gave me two balloons worth of that. Starting Flagile to ward off some kind of GI thing that's going around. Gave us an antibiotic balloon to use in case I develop a fever.
Very, very tired. Just going to try to ride out the next week and hopefully I won't contract anything.
Thursday, April 9, 2009
Day 0 - Transplant #1 finished!
Well, it was almost a non-event. We went into the seventh floor, they ran labs, and pre-medicated me with Kytril and Emend (for nausea) and hydrocortisone and benadryl (to ensure I wouldn't get "oogy" from the transplant). Then lots of saline. About an hour after I got there, they brought one of my eight little teensy bags of pink stem cells that I'd harvested a few weeks ago. It took 15 minutes to administer, during which time I tasted rotten moldy over-sweet butter so I sucked on a piece of hard candy to tolerate that. Blecccch. Otherwise, no side-effects!
Other than tiredeness, that is. I can feel the chemo coma setting in. They monitored me for another three hours post transplant, checking blood pressure, temp and other vitals. A 4PM, I was released, and we grabbed some Mexican food at our new favorite hangout here (reliable high-quality Mexican in Little Rock, of all places!). Now we're back at the apartment and I'm going to veg out on the couch.
Now we basically wait for the stem cells to rebuild the immune system. The nurse said this should take 7-10 days, and with luck I'll only be neutropenic for four or five. Let's hope it goes that smoothly. I don't want any sickness or anything to put me back in the hospital! The anti-fungal medicine they have put me on is causing my liver numbers to act up so they are taking me off it (Fluconazole) for 3-4 days so they can settle down. They are worried about a potential fungal infection called Thrush (I'm afraid to look it up...sounds nasty) and that's why they prescribe the anti-fungal...but we'll have to see what happens.
Otherwise, spirits are high. I'm reminded that 80% of the country would consider my treatment finished (after recuperation)...yet for here, this protocol which will cure me, is only half-done. Still, the cancer will be dead and gone when I'm finished. I'm predicting I will not be in complete remission after this transplant, but I suspect very good partial remission will be achieved. This is based on nothing other than the high protein numbers that persisted after induction. But I'm very confident that after the second transplant, if not the first one, I'll be cancer-free.
Onward and upward! And downward and sleepward...
Other than tiredeness, that is. I can feel the chemo coma setting in. They monitored me for another three hours post transplant, checking blood pressure, temp and other vitals. A 4PM, I was released, and we grabbed some Mexican food at our new favorite hangout here (reliable high-quality Mexican in Little Rock, of all places!). Now we're back at the apartment and I'm going to veg out on the couch.
Now we basically wait for the stem cells to rebuild the immune system. The nurse said this should take 7-10 days, and with luck I'll only be neutropenic for four or five. Let's hope it goes that smoothly. I don't want any sickness or anything to put me back in the hospital! The anti-fungal medicine they have put me on is causing my liver numbers to act up so they are taking me off it (Fluconazole) for 3-4 days so they can settle down. They are worried about a potential fungal infection called Thrush (I'm afraid to look it up...sounds nasty) and that's why they prescribe the anti-fungal...but we'll have to see what happens.
Otherwise, spirits are high. I'm reminded that 80% of the country would consider my treatment finished (after recuperation)...yet for here, this protocol which will cure me, is only half-done. Still, the cancer will be dead and gone when I'm finished. I'm predicting I will not be in complete remission after this transplant, but I suspect very good partial remission will be achieved. This is based on nothing other than the high protein numbers that persisted after induction. But I'm very confident that after the second transplant, if not the first one, I'll be cancer-free.
Onward and upward! And downward and sleepward...
Wednesday, April 8, 2009
Day -1
That's what they refer to the day before transplant as. I'm not sure if tomorrow is Day 0 or Day 1, but today was definitely Day -1.
Day-1 consisted of the last of my four days of Melphalan / mustard gas / whathaveyou. My white counts are starting to go haywire, crested and now beginning to ebb (though still normal for a couple more days, is my guess and that of the nurses with whom I speak). I also got a five-hour "balloon" of potassium as the chemo is wreaking havoc on that. The Dex is making me retain fluid which is causing weight gain and momentarily made me concerned about my kidneys, but all the tests show the kidneys are working fine so it's just an issue of the steroid keeping me ballooned up.
I tolerated the Melphalan pretty well and sucked on ice chips for 20+ minutes before administration, the 20 minutes of administration, and 20+ minutes after administration to ward off Mucositis. I'm also rinsing my mouth fairly religiously with this yucky-tasting mouthwash called Biotene that kills germs. These two prophylactic measures are the best they know to avoid the mouth sores, which are supposedly awful. So I'm sticking with them. For what it's worth, the APN (head nurse in charge of my case on the 7th floor) told me that Mucositis is associated with poor kidney function and since my kidneys are rockin' and rollin' with the beat, I should hopefully fare well. We shall see.
Also today, I got another push of Velcade (take THAT Myeloma!) and another shot of Lovinox in the belly -- the last of these for this cycle. I choked down my last four thalidomide pills this evening, too. No more poison in my body for another six weeks or so! Let's hope this batch did its dirty work.
Tomorrow is a climactic day -- and yet the procedure is very anticlimactic. I'll get some of my stem cells put back in me so that they can help rebuild the bone marrow that the chemo is right now destroying. Then I just need to settle into the feeling of utter exhaustion for two weeks, and hope I don't get sick. If I can stay out of the hospital, this should go much more smoothly than last time.
In the ongoing drama of my GI tract, I am treading the delicate line with grace right now. Now that I'm off the Thalidomide and Dex, hopefully I will be passing out of the danger zone for ER-level constipation. It gives me no joy to write of these topics, but I gotta keep the humor up somehow.
Before signing off, I want to thank some friends who came to visit and helped take care of me so Jill could see the kids. With apologies, these names are too important for initials: Paul Bridwell, Graeme Johnson and Tom Pluta. You are wonderful people and I very much appreciate your visit, kindness and sacrifice. I'm blessed with wonderful friends.
Okay...I'm off to bed...twelve hours from now I have a date with some of my blood! :)
Nighty night.
Day-1 consisted of the last of my four days of Melphalan / mustard gas / whathaveyou. My white counts are starting to go haywire, crested and now beginning to ebb (though still normal for a couple more days, is my guess and that of the nurses with whom I speak). I also got a five-hour "balloon" of potassium as the chemo is wreaking havoc on that. The Dex is making me retain fluid which is causing weight gain and momentarily made me concerned about my kidneys, but all the tests show the kidneys are working fine so it's just an issue of the steroid keeping me ballooned up.
I tolerated the Melphalan pretty well and sucked on ice chips for 20+ minutes before administration, the 20 minutes of administration, and 20+ minutes after administration to ward off Mucositis. I'm also rinsing my mouth fairly religiously with this yucky-tasting mouthwash called Biotene that kills germs. These two prophylactic measures are the best they know to avoid the mouth sores, which are supposedly awful. So I'm sticking with them. For what it's worth, the APN (head nurse in charge of my case on the 7th floor) told me that Mucositis is associated with poor kidney function and since my kidneys are rockin' and rollin' with the beat, I should hopefully fare well. We shall see.
Also today, I got another push of Velcade (take THAT Myeloma!) and another shot of Lovinox in the belly -- the last of these for this cycle. I choked down my last four thalidomide pills this evening, too. No more poison in my body for another six weeks or so! Let's hope this batch did its dirty work.
Tomorrow is a climactic day -- and yet the procedure is very anticlimactic. I'll get some of my stem cells put back in me so that they can help rebuild the bone marrow that the chemo is right now destroying. Then I just need to settle into the feeling of utter exhaustion for two weeks, and hope I don't get sick. If I can stay out of the hospital, this should go much more smoothly than last time.
In the ongoing drama of my GI tract, I am treading the delicate line with grace right now. Now that I'm off the Thalidomide and Dex, hopefully I will be passing out of the danger zone for ER-level constipation. It gives me no joy to write of these topics, but I gotta keep the humor up somehow.
Before signing off, I want to thank some friends who came to visit and helped take care of me so Jill could see the kids. With apologies, these names are too important for initials: Paul Bridwell, Graeme Johnson and Tom Pluta. You are wonderful people and I very much appreciate your visit, kindness and sacrifice. I'm blessed with wonderful friends.
Okay...I'm off to bed...twelve hours from now I have a date with some of my blood! :)
Nighty night.
Tuesday, April 7, 2009
Tuesday on floor 7...and sympathy for the Kurds...
Yesterday my friend Tom from business school arrived so it was the three amigos for most of the day, which was a lot of fun and continued to give me a sense of normalcy. Graeme has returned to Montreal, and Tom will be here tonight and tomorrow night when Jill returns, just in time for my transplant tomorrow.
In yesterday's session, they had to draw blood from my arms and had a hard time finding working veins (I understand this is a problem after chemo) so after the third try, I was about ready to tell them to just use the central line. That started the blood flowing. :) They evidently run special tests on Mondays which are corrupted by the presence of heparin (an anti-clotting agent that they inject into the line to ensure it works) so they have to take blood peripherally. Lovely.
Anyhow, things went fairly normally yesterday although the chemo is having an impact: white counts are spiking (which happen right before the collapse into neutropenia) and my uric acid levels and calcium rose, the former to outside the normal range. This is a function of the tumors being broken down, which is a good thing. But I still had to have an extra bag of saline attached, which added about 45 minutes to my time here. More of a nuisance was that despite the Kytril and Emend anti-nausea medicines, I still feel a little nauseous afterwards. I popped a Ragalin and that helped do the trick, and I was able to have a nice steak dinner with my friends.
The Ambien is no match for the Dexamtehasone. I lay awake in bed until 5:30 and then get 3 or 4 hours of sleep. Not satisfactory. I'm going to try tonight without the Ambien and see if it makes a difference. So far in the great gastrointestinal wars, regularity is winning out over the Thalidomide, but some ground is being given. I'll be watching for the impact of the Melphalan, which will kick in shortly, I'm sure.
Speaking of which, I'm about to receive my third of four infusions, and the nurse today informed me that Melphalan is mustard gas, essentially, in liquid form. Lovely. Bring it on -- the cancer's gonna die, die die!
In yesterday's session, they had to draw blood from my arms and had a hard time finding working veins (I understand this is a problem after chemo) so after the third try, I was about ready to tell them to just use the central line. That started the blood flowing. :) They evidently run special tests on Mondays which are corrupted by the presence of heparin (an anti-clotting agent that they inject into the line to ensure it works) so they have to take blood peripherally. Lovely.
Anyhow, things went fairly normally yesterday although the chemo is having an impact: white counts are spiking (which happen right before the collapse into neutropenia) and my uric acid levels and calcium rose, the former to outside the normal range. This is a function of the tumors being broken down, which is a good thing. But I still had to have an extra bag of saline attached, which added about 45 minutes to my time here. More of a nuisance was that despite the Kytril and Emend anti-nausea medicines, I still feel a little nauseous afterwards. I popped a Ragalin and that helped do the trick, and I was able to have a nice steak dinner with my friends.
The Ambien is no match for the Dexamtehasone. I lay awake in bed until 5:30 and then get 3 or 4 hours of sleep. Not satisfactory. I'm going to try tonight without the Ambien and see if it makes a difference. So far in the great gastrointestinal wars, regularity is winning out over the Thalidomide, but some ground is being given. I'll be watching for the impact of the Melphalan, which will kick in shortly, I'm sure.
Speaking of which, I'm about to receive my third of four infusions, and the nurse today informed me that Melphalan is mustard gas, essentially, in liquid form. Lovely. Bring it on -- the cancer's gonna die, die die!
Sunday, April 5, 2009
So far, so good!!
I am pleased to report that so far, me and Mr. Melphalan are getting along just fine.
I went to the seventh floor, checked into a semi-private room (fortunately nobody else showed) and sat in a recliner. They drew my bloodwork, and informed me they would not be proceeding if my CRP exceeded 10. I would be very sad to be all dressed up (having taken my Dex this morning) with nowhere to go, so I sat, and waited for results of my just-drawn blood to come back, while saline dripped into my arm and Paul and I watched Vicky Christina Barcelona (a nice movie, for what it's worth).
After about forty five minutes, my labs came back and my CRP was 7.0 -- right in the normal range. Green light for poison! I was given Kytril and something else (begins with an E...I'll report) as preventatives for nausea, and I was instructed by the nurse to suck on ice chips, which is believed to help prevent the painful mouth sores which are one of the most common side effects of Melphalan. So I got three big cups of crushed ice and commenced to eat this for 20 minutes leading up to the infusion, the 20 minutes of the infusion, and 30 minutes afterwards.
The infusion itself was no big deal. Melphalan can only exist in a liquid state for an hour, so they don't prepare the agent until they are ready to go. Once they prepared it, they brought in a little plastic bag, confirmed my identity, and started the drip. I felt fine, and still do. My cancer, on the other hand, just took a big kick in the face. I also got an IV push of Velcade, and a fairly painful shot of Lovinox (a preventative for the blood clotting that Dex and Thalidomide can cause) in the belly.
We were there about three hours, maybe a little less. I left feeling fine. In fact, four hours later, my back hurts less than it has in quite sometime. A big one-two punch to the face of the cancer. I have been rinsing my mouth with a special mouthwash that is supposed to help ward off the mouth sores, but otherwise, I feel pretty darn good. I am sure this will give way to exhaustion as neutropenia sets in...but so long as I can avoid penumonia or an opportunistic infection, I am optimistic that I will weather this current batch of chemo.
My cancer, on the other hand, is going to be reeling. There is a marked decrease in back pain, which I attribute to the Myeloma not knowing what hit it.
I'm going to grab a dinner out with my friend Graeme while my stamina allows. Meanwhile, thanks again for your support!
I went to the seventh floor, checked into a semi-private room (fortunately nobody else showed) and sat in a recliner. They drew my bloodwork, and informed me they would not be proceeding if my CRP exceeded 10. I would be very sad to be all dressed up (having taken my Dex this morning) with nowhere to go, so I sat, and waited for results of my just-drawn blood to come back, while saline dripped into my arm and Paul and I watched Vicky Christina Barcelona (a nice movie, for what it's worth).
After about forty five minutes, my labs came back and my CRP was 7.0 -- right in the normal range. Green light for poison! I was given Kytril and something else (begins with an E...I'll report) as preventatives for nausea, and I was instructed by the nurse to suck on ice chips, which is believed to help prevent the painful mouth sores which are one of the most common side effects of Melphalan. So I got three big cups of crushed ice and commenced to eat this for 20 minutes leading up to the infusion, the 20 minutes of the infusion, and 30 minutes afterwards.
The infusion itself was no big deal. Melphalan can only exist in a liquid state for an hour, so they don't prepare the agent until they are ready to go. Once they prepared it, they brought in a little plastic bag, confirmed my identity, and started the drip. I felt fine, and still do. My cancer, on the other hand, just took a big kick in the face. I also got an IV push of Velcade, and a fairly painful shot of Lovinox (a preventative for the blood clotting that Dex and Thalidomide can cause) in the belly.
We were there about three hours, maybe a little less. I left feeling fine. In fact, four hours later, my back hurts less than it has in quite sometime. A big one-two punch to the face of the cancer. I have been rinsing my mouth with a special mouthwash that is supposed to help ward off the mouth sores, but otherwise, I feel pretty darn good. I am sure this will give way to exhaustion as neutropenia sets in...but so long as I can avoid penumonia or an opportunistic infection, I am optimistic that I will weather this current batch of chemo.
My cancer, on the other hand, is going to be reeling. There is a marked decrease in back pain, which I attribute to the Myeloma not knowing what hit it.
I'm going to grab a dinner out with my friend Graeme while my stamina allows. Meanwhile, thanks again for your support!
Ready to rock
The last couple of days have been really nice -- almost normal, actually. I got a couple of pints of blood which gave me a bit more energy, the cough is on its last legs (only really coughed about five times yesterday and none yet today), and I've had a great time relaxing and doing mostly nothing with my friend Paul. We've eaten well, went to a pub and watched the MSU / UConn game last night over a few pints of Guinness rather than blood, etc. It almost feels like I don't have cancer...until I notice my port, and my aching back, and my bald head. :)
Today begins the next ass-kicking for the disease. I told my cancer cells last night to enjoy their time while they can because the brutality starts soon, and it will be merciless.
Chemical diet for the next four days, as an example:
AM:
- 10 pills of dexamethasone (4mg each) to kick the cancer in the face
- Acyclovir horse pill to ward off viruses
- Metanex prescription vitamin B pill to provide energy and combat neuropathy
- Protonix to counteract heartburn from chemo
Chemo: antinausea medicine (I hope!) plus 50mg/m2 of Melphalan plus Velcade via IV push -- kicking cancer in face big time
Afternoon:
- another Metanex
- Another Acyclovir
- Huge horse pill of Levaquin (antibiotic that I'm now seeing FDA warning ads on TV for...)
- Fluconazole to ward off fungal infections
Evening:
- 200mg Thalidomide (another kick to the cancer)
- another Protonix for heartburn
- Senna and Docusan, two kinds of "keep ya regular" pills which I will be popping like candy this time out to avoid a repeat of the last disaster
Tomorrow morning I'll add the "keep ya regular" pills in the AM as well, and also Cymbalta for four days which is the anti-depressant that helps with neuropathy.
PLUS I'll get injections of Lovanox/Lovamax/Lovawhatever in the stomach to ward off the deep vein thrombosis (blood clots) that the thalidomide brings on.
I am ready. I'll write more after the treatment and let you know all about it, dear readers. Have a good one!
Today begins the next ass-kicking for the disease. I told my cancer cells last night to enjoy their time while they can because the brutality starts soon, and it will be merciless.
Chemical diet for the next four days, as an example:
AM:
- 10 pills of dexamethasone (4mg each) to kick the cancer in the face
- Acyclovir horse pill to ward off viruses
- Metanex prescription vitamin B pill to provide energy and combat neuropathy
- Protonix to counteract heartburn from chemo
Chemo: antinausea medicine (I hope!) plus 50mg/m2 of Melphalan plus Velcade via IV push -- kicking cancer in face big time
Afternoon:
- another Metanex
- Another Acyclovir
- Huge horse pill of Levaquin (antibiotic that I'm now seeing FDA warning ads on TV for...)
- Fluconazole to ward off fungal infections
Evening:
- 200mg Thalidomide (another kick to the cancer)
- another Protonix for heartburn
- Senna and Docusan, two kinds of "keep ya regular" pills which I will be popping like candy this time out to avoid a repeat of the last disaster
Tomorrow morning I'll add the "keep ya regular" pills in the AM as well, and also Cymbalta for four days which is the anti-depressant that helps with neuropathy.
PLUS I'll get injections of Lovanox/Lovamax/Lovawhatever in the stomach to ward off the deep vein thrombosis (blood clots) that the thalidomide brings on.
I am ready. I'll write more after the treatment and let you know all about it, dear readers. Have a good one!
Thursday, April 2, 2009
The transplant plan...
First, thanks for the words of encouragement on the heels of my previous post, which I admit was rather moribund. But honestly, you should see that place.
We met with BB yesterday and he was quite optimistic about things. We went through my recent series of tests, confirming again that all the focal lesions are gone (although there are a lot of "hot spots" still, including many in my spine which puts to rest, I think, the issue of where the back pain is coming from) and that my IgG is down to around 5600. My marrow, which had been 70%+ plasma cells since diagnosis, is now around 50%, which is certainly a step in the right direction. BB is going to give me a couple of units of blood to help with the exhaustion.
Jill left today for a week to spend some quality time with the kids, which is overdue for all parties. My dear friend Paul is going to stay with me for a few days, followed by some friends from business school, whom I look forward to seeing. I continue to be humbled by the kindness and generosity of my friends and the difference that they make. Thank you.
The traditional transplant involves 1-2 days of very high dose Melphalan, a type of chemo that's been used for decades. Typically this dose will be 200 mg/m2, as noted previously. In the BB "lite" protocol, I will receive 50mg/m2 per day for four days -- the same total amount but fractionated to reduce toxicity: i.e. hopefully there will be no nausea of vomiting (BB seemed pretty confident of this). On the fifth day, I'll receive a bag of my previously-harvested stem cells. The Melphalan will destroy the old bone marrow and blood cells; the stem cells will rebuild it. While I have no immune system I'll be pumped full of blood, platelets and God knows what to get white counts up, and then presto: hopefully remission. Then I'll have a couple of weeks off to rinse, lather and repeat.
This will start on Sunday. In the meantime, I continue for daily labs and try to get rid of the last of my cough, which is still rattling around but is 99% gone. More news as it becomes available!
We met with BB yesterday and he was quite optimistic about things. We went through my recent series of tests, confirming again that all the focal lesions are gone (although there are a lot of "hot spots" still, including many in my spine which puts to rest, I think, the issue of where the back pain is coming from) and that my IgG is down to around 5600. My marrow, which had been 70%+ plasma cells since diagnosis, is now around 50%, which is certainly a step in the right direction. BB is going to give me a couple of units of blood to help with the exhaustion.
Jill left today for a week to spend some quality time with the kids, which is overdue for all parties. My dear friend Paul is going to stay with me for a few days, followed by some friends from business school, whom I look forward to seeing. I continue to be humbled by the kindness and generosity of my friends and the difference that they make. Thank you.
The traditional transplant involves 1-2 days of very high dose Melphalan, a type of chemo that's been used for decades. Typically this dose will be 200 mg/m2, as noted previously. In the BB "lite" protocol, I will receive 50mg/m2 per day for four days -- the same total amount but fractionated to reduce toxicity: i.e. hopefully there will be no nausea of vomiting (BB seemed pretty confident of this). On the fifth day, I'll receive a bag of my previously-harvested stem cells. The Melphalan will destroy the old bone marrow and blood cells; the stem cells will rebuild it. While I have no immune system I'll be pumped full of blood, platelets and God knows what to get white counts up, and then presto: hopefully remission. Then I'll have a couple of weeks off to rinse, lather and repeat.
This will start on Sunday. In the meantime, I continue for daily labs and try to get rid of the last of my cough, which is still rattling around but is 99% gone. More news as it becomes available!
Tuesday, March 31, 2009
A creepy glimpse ahead...
First of all, no sooner do I compliment the biochemist behind Ambien than his child-drug lets me down. Night before last I got three hours, last night six but only after waking up for 15 minutes drenched in sweat. By the way, the red blood count is behind the wild swings in temperature (mostly freezing).
Not much to report, other than appetite is good, and I've been dutifully going to the infusion center every day to have more life-essence sucked out of me and be poked and prodded. Lately they've been taking stuff out of the arm AND the central line. ENOUGH ALREADY.
To pass the time, Jill and I went up to the seventh floor of the hospital where the high-dose chemo is given. If the infusion center is full of life (and it's not), the seventh floor was like walking into a morgue. The patients on the first floor, even if they are neutropenic and wearing a mask, have some trace of life among them. There is a TV on. People chat about their treatment. In the actual infusion room, the nurses laugh and chat with the patients and there is something approaching energy.
The seventh floor is old, dirty, depressing and filled with people that look like they are praying for death. Cadaverous, vacant eyes, people unable to lift themselves from their reclined chairs (each in their own room at least). Sorry to go HP Lovecraft of you folks but really, it's grim. It's a hospital. There's nothing "outpatient"-feeling about it. We ask how long the daily visits are. The nurses say anywhere from two to eight hours, depending on what needs to be done.
This is my near future. We see BB tomorrow and I expect he'll want me to begin four days of high-dose chemo, followed by the transplant, followed by god knows what to try to get my counts back to normal, all in the tomb on the seventh floor.
The only thing is...my back is killing me and I don't know if it's lingering affects of the surgery, now two weeks old, or if there is actually new damage. If the latter, I don't want to undergo anything that's going to make me neutropenic until after they've fixed me.
God I hope I'm ready for this. Your humble narrator signing off, me brothers.
Not much to report, other than appetite is good, and I've been dutifully going to the infusion center every day to have more life-essence sucked out of me and be poked and prodded. Lately they've been taking stuff out of the arm AND the central line. ENOUGH ALREADY.
To pass the time, Jill and I went up to the seventh floor of the hospital where the high-dose chemo is given. If the infusion center is full of life (and it's not), the seventh floor was like walking into a morgue. The patients on the first floor, even if they are neutropenic and wearing a mask, have some trace of life among them. There is a TV on. People chat about their treatment. In the actual infusion room, the nurses laugh and chat with the patients and there is something approaching energy.
The seventh floor is old, dirty, depressing and filled with people that look like they are praying for death. Cadaverous, vacant eyes, people unable to lift themselves from their reclined chairs (each in their own room at least). Sorry to go HP Lovecraft of you folks but really, it's grim. It's a hospital. There's nothing "outpatient"-feeling about it. We ask how long the daily visits are. The nurses say anywhere from two to eight hours, depending on what needs to be done.
This is my near future. We see BB tomorrow and I expect he'll want me to begin four days of high-dose chemo, followed by the transplant, followed by god knows what to try to get my counts back to normal, all in the tomb on the seventh floor.
The only thing is...my back is killing me and I don't know if it's lingering affects of the surgery, now two weeks old, or if there is actually new damage. If the latter, I don't want to undergo anything that's going to make me neutropenic until after they've fixed me.
God I hope I'm ready for this. Your humble narrator signing off, me brothers.
Sunday, March 29, 2009
A special thanks...
...to the biochemist that invented Ambien. I FINALLY got six hours of uninterrupted sleep last night, thanks to that little miracle pill. They also proscribed something to replace the "good" bacteria in my digestive system that may have been wiped out from the Tigecil. Meanwhile, relieved to report that intestinal distress is much less severe. My only complaints now are exhaustion, the damn cough (which is much improved) and lingering back pain. Plus I have at least three days before the doctor is likely to put any new poison in me so hopefully I'll get on the mend.
In other news, for those interested (including those in my band that might be reading this) I got the very first rough mix of a song from the new record from our producer. It needs a little tweaking but it sounds great. That lifted my spirits, too.
Tomorrow is another easy day...just an echocardiogram followed by labwork. I should strive to enjoy these days....they are the "good ones" I suppose, although I'm so damn tired it's hard to really throw myself into it. Jill and I did manage to go out to eat at a Cajun place called the Faded Rose and it was quite good -- plus they played great classic rock in the background including a beautiful and rarely heard song called In Thee by Blue Oyster Cult of all people...but it's almost all acoustic. I've never heard it played on any radio / satellite / whatever anywhere.
Anyhow...that's all that's fit to print from Little Rock. More to come as events develop!
In other news, for those interested (including those in my band that might be reading this) I got the very first rough mix of a song from the new record from our producer. It needs a little tweaking but it sounds great. That lifted my spirits, too.
Tomorrow is another easy day...just an echocardiogram followed by labwork. I should strive to enjoy these days....they are the "good ones" I suppose, although I'm so damn tired it's hard to really throw myself into it. Jill and I did manage to go out to eat at a Cajun place called the Faded Rose and it was quite good -- plus they played great classic rock in the background including a beautiful and rarely heard song called In Thee by Blue Oyster Cult of all people...but it's almost all acoustic. I've never heard it played on any radio / satellite / whatever anywhere.
Anyhow...that's all that's fit to print from Little Rock. More to come as events develop!
Friday, March 27, 2009
You people are the best...
First, the update. Pain from hip a little better today with some help from Tylenol. Labs indicate my blood is ALMOST back to normal. My red blood cells are very low, which helps explain my exhaustion (I'm anemic) and I'm not sure why they are taking so long to catch up but whites are now squarely in the normal range, platelets are normal, kidney function is normal, liver function likewise, and CRP is down to 12 (from a high of 260) with normal being under 10 so that's very close.
Today was a brutally early day with a 6:30AM PET Scan and the noon MRI. Lying on those boards hurt my hip quite a bit but it had to be done. I managed to have a full dinner courtesy of Jill's lovely cooking -- her chicken-stir-fry-over-rice even penetrated this nasty awful metallic film that seems to be applied, courtesy of my poor mangled taste buds (some of the cells that often give up the ghost to chemo), to all food. Dinner was nice.
Importantly, I did some online sleuthing and I would not at all be surprised to find that the Fat Man / Little Boy antibiotic they put me on -- Tigecycline -- is behind my intestinal distress since that's a very common side effect. I'm going to ask them to discontinue it -- I've had 7 of the 10 days worth of it.
Now...I want to thank all of you for reading, and for your comments and for your emails. You honestly don't understand how something as simple as a comment on this blog restores my strength and sense of purpose. I'm touched by all of you so very much, and Jill and I thank you.
Today was a brutally early day with a 6:30AM PET Scan and the noon MRI. Lying on those boards hurt my hip quite a bit but it had to be done. I managed to have a full dinner courtesy of Jill's lovely cooking -- her chicken-stir-fry-over-rice even penetrated this nasty awful metallic film that seems to be applied, courtesy of my poor mangled taste buds (some of the cells that often give up the ghost to chemo), to all food. Dinner was nice.
Importantly, I did some online sleuthing and I would not at all be surprised to find that the Fat Man / Little Boy antibiotic they put me on -- Tigecycline -- is behind my intestinal distress since that's a very common side effect. I'm going to ask them to discontinue it -- I've had 7 of the 10 days worth of it.
Now...I want to thank all of you for reading, and for your comments and for your emails. You honestly don't understand how something as simple as a comment on this blog restores my strength and sense of purpose. I'm touched by all of you so very much, and Jill and I thank you.
Catch up time!
Sorry folks, but this week has flown by. It's also hard to convey the exhaustion that sets in -- whether this is due to the chemo, or 18 days in the hospital on fairly high-dose Dilaudid is hard to discern but the notion of entering a blog update seemingly involves as much effort as active participation in an Amish barn-raising.
On Monday we met with BB, who made some interesting (as always) observations about the course of my treatment, which was right on target as far as he's concerned. He said I have a "strange disease" insofar as it makes a lot of protein but is otherwise fairly benign. Given that I had back surgery for four mangled vertebrae, I'm not sure I'd call it benign -- but then I didn't have kidney failure so perhaps I should count my blessings. He said that there was a half-life of IgG and other factors that confuse the numbers, but that I should consider things to have been around 10,000 at their worst and now around 6,000. BB felt this was good. He also said that the rising CRP (C-reactive protein, a measure of infection) was due to hematopoesis (growth of red blood cells) rather than actual infection. He further pointed out that the rising light-chains in my blood (another measure of the disease) are caused by something in the treatment and are transitory. So basically he laid to rest any concerns we had about my labs. Everybody is pleased that I harvested so many stem cells, and BB targeted the next phase of the protocol, "Transplant 1", to begin this Saturday -- which was promptly delayed when we scheduled all the tests he wanted. I now meet with him next Wednesday, and I presume treatment will begin on Thursday.
On Tuesday, we spent 9 hours at the hospital undergoing tests. A CT in the morning, an EKG, an endless MRI, and bloodwork in the infusiong center. It was exhausting and my stoic approach to this whole ordeal started to cave -- I feel terrible and I'm sick of it. My back hurts, my stomach is upset, this F$^!#@$!@ cough keeps anything from healing, and I'm utterly exhausted. I want to be better again, dammit. I'm sick of tests, I feel like a prisoner in an internment camp, etc. I have unsettling dreams Sunday and Monday night that impact my psyche. I start to think maybe there's something to the anti-depressant qualities of Cymbalta, the drug that I took for two days for neuropathy, that could make it worthwhile. I decide to wait.
Wednesday is a better day, with only the infusion center to worry about. Still, I'm exhausted. My life has been reduced to fitful attempts at sleep, followed by days of sitting on the couch waiting for night to fall. It's awful and I understand now why someone in their 70s might look at BB's program as madness. But at 40, it remains the right choice for me. This is a poor palliative, though, as I observe that my taste buds are now shot. Steak has no flavor. Nothing appeals. The pounds continue to drop -- not all from the right places mind you -- and I can't think of anything I want to eat.
Thursday we were due to begin with yet another MRI at 7AM. Neither Jill nor I slept even five minutes. Jill, sweetheart that she is, suggested we just reschedule it -- after all we have until next Wed with BB -- and deal with the consequences later. This allows us to sleep in until 9:30, after which we report to the clinic for a pre-bone marrow consult to once again explain why I shouldn't require sedation. I sign the forms. We then proceed to outpatient surgery, where they do the deed. I'm blissfully unaware of anything...until about an hour after the procedure with the painkillers wear off. My hip is KILLING ME. Previous marrow biopsies haven't hurt nearly this much. Tylenol helps a bit -- and also aids my back. If I could just lose this damn cough and get a couple of good nights' sleep, I have to imagine things would improve.
I'm also doing several balancing acts -- I will never again allow myself to be constipated, but the converse is now happening and let me tell you, 10 trips per night to the bathroom is no picnic either. I have to imagine the meds I took to ensure regularity (and which I ceased about three days ago) are getting out of my system but it's getting very old, and of course it's yet another thing that contributes to my inability to sleep.
Meanwhile, I don't know if it's my thyroid or the cooling system in the apartment or the horrible synthetic comforter that came with our condo's master bed but I pass rapidly between the chills and heat sweats -- there's virtually no equilbrium. I worry that the sweating will affect the dressing on my ever-so-important Cook catheter that hangs dutifully from the right side of my neck, or that God forbid the moisture renders the catheter vulnerable to infection (so stern was the warning to "NOT GET THIS WET!").
I manage to take a shower every few days by dutifully wrapping the catheter first in press-n-seal wrap, and then layering a washcloth or towel over it and replacing said washcloth upon the first sign of moisture. This is a chore. Everything is a chore. And the fact that my back hurts makes all this activity more difficult that it otherwise would be.
Today began with a 6:30 PET scan that we made, and continues with another MRI about an hour from now (the replacement from the early morning one we missed). Then to the infusion center, and then perhaps rest. It's so hard to see the end of the tunnel...but I remind myself I'm one day closer to it.
I'll try to do a better job of posting more frequently! Be well, all of you.
On Monday we met with BB, who made some interesting (as always) observations about the course of my treatment, which was right on target as far as he's concerned. He said I have a "strange disease" insofar as it makes a lot of protein but is otherwise fairly benign. Given that I had back surgery for four mangled vertebrae, I'm not sure I'd call it benign -- but then I didn't have kidney failure so perhaps I should count my blessings. He said that there was a half-life of IgG and other factors that confuse the numbers, but that I should consider things to have been around 10,000 at their worst and now around 6,000. BB felt this was good. He also said that the rising CRP (C-reactive protein, a measure of infection) was due to hematopoesis (growth of red blood cells) rather than actual infection. He further pointed out that the rising light-chains in my blood (another measure of the disease) are caused by something in the treatment and are transitory. So basically he laid to rest any concerns we had about my labs. Everybody is pleased that I harvested so many stem cells, and BB targeted the next phase of the protocol, "Transplant 1", to begin this Saturday -- which was promptly delayed when we scheduled all the tests he wanted. I now meet with him next Wednesday, and I presume treatment will begin on Thursday.
On Tuesday, we spent 9 hours at the hospital undergoing tests. A CT in the morning, an EKG, an endless MRI, and bloodwork in the infusiong center. It was exhausting and my stoic approach to this whole ordeal started to cave -- I feel terrible and I'm sick of it. My back hurts, my stomach is upset, this F$^!#@$!@ cough keeps anything from healing, and I'm utterly exhausted. I want to be better again, dammit. I'm sick of tests, I feel like a prisoner in an internment camp, etc. I have unsettling dreams Sunday and Monday night that impact my psyche. I start to think maybe there's something to the anti-depressant qualities of Cymbalta, the drug that I took for two days for neuropathy, that could make it worthwhile. I decide to wait.
Wednesday is a better day, with only the infusion center to worry about. Still, I'm exhausted. My life has been reduced to fitful attempts at sleep, followed by days of sitting on the couch waiting for night to fall. It's awful and I understand now why someone in their 70s might look at BB's program as madness. But at 40, it remains the right choice for me. This is a poor palliative, though, as I observe that my taste buds are now shot. Steak has no flavor. Nothing appeals. The pounds continue to drop -- not all from the right places mind you -- and I can't think of anything I want to eat.
Thursday we were due to begin with yet another MRI at 7AM. Neither Jill nor I slept even five minutes. Jill, sweetheart that she is, suggested we just reschedule it -- after all we have until next Wed with BB -- and deal with the consequences later. This allows us to sleep in until 9:30, after which we report to the clinic for a pre-bone marrow consult to once again explain why I shouldn't require sedation. I sign the forms. We then proceed to outpatient surgery, where they do the deed. I'm blissfully unaware of anything...until about an hour after the procedure with the painkillers wear off. My hip is KILLING ME. Previous marrow biopsies haven't hurt nearly this much. Tylenol helps a bit -- and also aids my back. If I could just lose this damn cough and get a couple of good nights' sleep, I have to imagine things would improve.
I'm also doing several balancing acts -- I will never again allow myself to be constipated, but the converse is now happening and let me tell you, 10 trips per night to the bathroom is no picnic either. I have to imagine the meds I took to ensure regularity (and which I ceased about three days ago) are getting out of my system but it's getting very old, and of course it's yet another thing that contributes to my inability to sleep.
Meanwhile, I don't know if it's my thyroid or the cooling system in the apartment or the horrible synthetic comforter that came with our condo's master bed but I pass rapidly between the chills and heat sweats -- there's virtually no equilbrium. I worry that the sweating will affect the dressing on my ever-so-important Cook catheter that hangs dutifully from the right side of my neck, or that God forbid the moisture renders the catheter vulnerable to infection (so stern was the warning to "NOT GET THIS WET!").
I manage to take a shower every few days by dutifully wrapping the catheter first in press-n-seal wrap, and then layering a washcloth or towel over it and replacing said washcloth upon the first sign of moisture. This is a chore. Everything is a chore. And the fact that my back hurts makes all this activity more difficult that it otherwise would be.
Today began with a 6:30 PET scan that we made, and continues with another MRI about an hour from now (the replacement from the early morning one we missed). Then to the infusion center, and then perhaps rest. It's so hard to see the end of the tunnel...but I remind myself I'm one day closer to it.
I'll try to do a better job of posting more frequently! Be well, all of you.
Sunday, March 22, 2009
As soon as I brag...
...about the igG going down, yesterday's markers were 6500. Oh well. Not supposed to look day-by-day.
The good: still out of the hospital, slept well last night.
The bad: IgG and CRP both up. CRP over 100 now. Still can't shake this infection.
The ugly: Nausea and vomiting continues.
I got out of the apartment long enough to walk to lunch three blocks away...now I'm exhausted. Going to rest.
The good: still out of the hospital, slept well last night.
The bad: IgG and CRP both up. CRP over 100 now. Still can't shake this infection.
The ugly: Nausea and vomiting continues.
I got out of the apartment long enough to walk to lunch three blocks away...now I'm exhausted. Going to rest.
Saturday, March 21, 2009
Free at las....blaaaaargh.....
So I did get released yesterday. I think I was not quite ready for primetime but I've been taking it easier and I'm surviving.
I got out of the hospital around 5:45PM yesterday, and went to Walgreens to pick up the oral Dilaudid that I would need for "breakthrough" pain in the event my Fentynyl patches failed me. While at Walgreens, I started getting a horrible nauseous feeling. I popped an Ativan and asked Gordon to wait in the parking lot while my stomach settled. After 10 minues of focusing, we got in the car and made it back to the apartment. 10 minutes later I was projectile vomiting, into dry heaves. The only stuff that came up was phlegm so I'm not sure if there is some kind of drip going on from the remnants of the lung infection or what, but whatever it was, I didn't feel good. At all.
I tried Ragulin once I was cleaned out, and it seemed to help. That and holding perfectly still, watching some of the 2nd round of the NCAA tournament. Then I crashed at around midnight.
I slept very well -- the only time I havent been interrupted every 3 hours by a nurse wanting vials in almost three weeks. I got up at 3AM and coughed up a bit, but had no problem going right back to sleep and I slept until 9AM, which was great. I woke up feeling pretty rested and so I tried to have a little breakfast bar, with some diet coke (no regular water is allowed because of the low sodium situation I've got). Unfortunately, this didn't work. 20 minutes later I was throwing up again, violently cleaning out any of the morning pills I took -- including the Ativan that I had taken for nausea.
I waited 20 minutes for my stomach to settle and I took a Ragulin since this seems to work AFTER a bout of nausea to hold things together. We are running low on pills, though...I've got plenty of Ativan, which doesn't work that well for me.
I went to the infusion center -- by the way, terrible idea to drive around in a BMW M6 if you have a bad back. There seems to be a huge metal pole sticking out of the seat RIGHT into where my back hurts. Every bump is agony.
At the infusion center, I told the nurse about the nausea and they gave me some intravenous Phenergan (sp) which is yet another type of anti-nausea. They also wrote a prescription for suppositories -- not delightful, but if you think about it, when you can't keep anything down, how do you keep down the meds? I noted to the nurse that I hadn't had a bowel movement in two days, but also noted that I hadn't really eaten anything since I was discharged and said that I was on stool softeners, etc. We agreed to monitor it closely. I'm not going to have anything extreme...yet.
We went to Walgreen's again to pick up the suppositories and also bought some of those sweet Eda's strawberry bars that I've become addicated to. We also bought some potato chips to keep the salt up (not kidding). It's interesting on the salt...I went back to the oldest labs I had that measured Na in my blood and it's from mid-February and the Na is 131 (135-145 is normal). Could it be that we are worrying too much about low Na? Maybe this is my baseline? Do doctors really want a HIGHER salt diet for people?
We came home, watched the Bruins get annihilated by Villanova, had a strawberry bar and some chips and then slept. For about five hours. After which Gordon woke me up to check up on me...I got up, and decided I was hungry enough to eat some more. We phoned in a steak order from Sonny Williams' steakhouse and I had a respectable dinner (steak, potatoes, another strawberry bar, half a glass of wine, and a lot of Gatorade which I also decided today would be good for replenishing salt and potassium, etc.).
Since then, we've been vegging, watching TV. I actually feel pretty good -- my energy level is low, and my back is stiff and sore where they operated, but I feel reasonably good. I'm not coughing nearly as much...although I need to right now and probably will do so immediately after signing off on this blog. There's still a bit of a rattle in my lungs But I do feel like I am getting healthier.
I see BB on Monday AM and I'm sure he will order a fresh PET scan and bone marrow biopsy for sometime next week. As written here before, I'm going to insist on conscious sedation for the bone marrow, and they can complain all they want but I'm not budging. If I had to guess, I'll have those procedures done on Wed and Thursday, and start the 5-day course of high-dose Melphalan on Thursday afternoon. We'll see what BB has to say.
I will also note that the IgG marker, which I hadn't seen in my labs, was included in some medical notes that accompanied my discharge from the hospital. I'm not going to read too much into it because of the half-life of both the chemical agents and the cancer itself, but as a rend, it is quite positive:
2/18/09 11200
2/28/09 8110
3/5/09 4550
3/9/09 6320
3/12/09 6420
3/16/09 4490
Bear in mind, again, that all seven focal lesions were gone on the PET scan ordered on 3/5, which is a great sign. I am hopeful the next PET Scan posts similar results and that the next Bone Marrow reflects lower activity...although I hasten to remind myself and you, dear readers, that my Bone Marrow activity was at 70% at diagnosis and remained at 70% on 2/18...so it holds pretty steady.
I'm in danger of rambling now...we are putting a pizza in the oven so I'm going to go in an effort to eat a bit more.
Thanks again for your support!
I got out of the hospital around 5:45PM yesterday, and went to Walgreens to pick up the oral Dilaudid that I would need for "breakthrough" pain in the event my Fentynyl patches failed me. While at Walgreens, I started getting a horrible nauseous feeling. I popped an Ativan and asked Gordon to wait in the parking lot while my stomach settled. After 10 minues of focusing, we got in the car and made it back to the apartment. 10 minutes later I was projectile vomiting, into dry heaves. The only stuff that came up was phlegm so I'm not sure if there is some kind of drip going on from the remnants of the lung infection or what, but whatever it was, I didn't feel good. At all.
I tried Ragulin once I was cleaned out, and it seemed to help. That and holding perfectly still, watching some of the 2nd round of the NCAA tournament. Then I crashed at around midnight.
I slept very well -- the only time I havent been interrupted every 3 hours by a nurse wanting vials in almost three weeks. I got up at 3AM and coughed up a bit, but had no problem going right back to sleep and I slept until 9AM, which was great. I woke up feeling pretty rested and so I tried to have a little breakfast bar, with some diet coke (no regular water is allowed because of the low sodium situation I've got). Unfortunately, this didn't work. 20 minutes later I was throwing up again, violently cleaning out any of the morning pills I took -- including the Ativan that I had taken for nausea.
I waited 20 minutes for my stomach to settle and I took a Ragulin since this seems to work AFTER a bout of nausea to hold things together. We are running low on pills, though...I've got plenty of Ativan, which doesn't work that well for me.
I went to the infusion center -- by the way, terrible idea to drive around in a BMW M6 if you have a bad back. There seems to be a huge metal pole sticking out of the seat RIGHT into where my back hurts. Every bump is agony.
At the infusion center, I told the nurse about the nausea and they gave me some intravenous Phenergan (sp) which is yet another type of anti-nausea. They also wrote a prescription for suppositories -- not delightful, but if you think about it, when you can't keep anything down, how do you keep down the meds? I noted to the nurse that I hadn't had a bowel movement in two days, but also noted that I hadn't really eaten anything since I was discharged and said that I was on stool softeners, etc. We agreed to monitor it closely. I'm not going to have anything extreme...yet.
We went to Walgreen's again to pick up the suppositories and also bought some of those sweet Eda's strawberry bars that I've become addicated to. We also bought some potato chips to keep the salt up (not kidding). It's interesting on the salt...I went back to the oldest labs I had that measured Na in my blood and it's from mid-February and the Na is 131 (135-145 is normal). Could it be that we are worrying too much about low Na? Maybe this is my baseline? Do doctors really want a HIGHER salt diet for people?
We came home, watched the Bruins get annihilated by Villanova, had a strawberry bar and some chips and then slept. For about five hours. After which Gordon woke me up to check up on me...I got up, and decided I was hungry enough to eat some more. We phoned in a steak order from Sonny Williams' steakhouse and I had a respectable dinner (steak, potatoes, another strawberry bar, half a glass of wine, and a lot of Gatorade which I also decided today would be good for replenishing salt and potassium, etc.).
Since then, we've been vegging, watching TV. I actually feel pretty good -- my energy level is low, and my back is stiff and sore where they operated, but I feel reasonably good. I'm not coughing nearly as much...although I need to right now and probably will do so immediately after signing off on this blog. There's still a bit of a rattle in my lungs But I do feel like I am getting healthier.
I see BB on Monday AM and I'm sure he will order a fresh PET scan and bone marrow biopsy for sometime next week. As written here before, I'm going to insist on conscious sedation for the bone marrow, and they can complain all they want but I'm not budging. If I had to guess, I'll have those procedures done on Wed and Thursday, and start the 5-day course of high-dose Melphalan on Thursday afternoon. We'll see what BB has to say.
I will also note that the IgG marker, which I hadn't seen in my labs, was included in some medical notes that accompanied my discharge from the hospital. I'm not going to read too much into it because of the half-life of both the chemical agents and the cancer itself, but as a rend, it is quite positive:
2/18/09 11200
2/28/09 8110
3/5/09 4550
3/9/09 6320
3/12/09 6420
3/16/09 4490
Bear in mind, again, that all seven focal lesions were gone on the PET scan ordered on 3/5, which is a great sign. I am hopeful the next PET Scan posts similar results and that the next Bone Marrow reflects lower activity...although I hasten to remind myself and you, dear readers, that my Bone Marrow activity was at 70% at diagnosis and remained at 70% on 2/18...so it holds pretty steady.
I'm in danger of rambling now...we are putting a pizza in the oven so I'm going to go in an effort to eat a bit more.
Thanks again for your support!
Friday, March 20, 2009
On the verge of release...
Mornin' folks.
A lot (mostly good) has happened in the last 24 hours:
* I continue to feel better following back surgery and while the back is still quite tender where they did the work, other than some stiffness and soreness there I'm feeling pretty good.
* I am off Dilaudid and am relying instead on a fairly minor continuous dose of Fentanyl delivered via patches on my shoulder. I will have oral Dilaudid in case of breakthrough pain but basically I'm off the IV. This means I can type a lot better, too. :) It's amazing how thick a fog that stuff puts one in. I still can't think lucidly enough to construct that previous sentence without ending it in a preposition, but things are improving.
* My blood numbers are stabilizing. I got another pint of blood yesterday, my platelets continue to go up, my electrolytes are reaching normal ranges, my white cell count is still on the high side at 22 and change but coming down. Everything is as expected there.
* I checked out the bloodflow in my legs via doppler/ultrasound to make sure the pain I felt in my left leg was coincidental with back surgery rather than bloodclot-related. Everything looks good.
* Turd the Merciless tried to mount another attack but we kept in front of the constipation with Lactulose so all systems are working.
Hopefully, I will be released from the hospital today. BB came by yesterday and seemed to think I could be released immediately but he then acknowledged I had to get off the IV medication, which I've now done. He seemed very interested in rapidly doing another bone marrow and PET scan to "re-stage me" and then proceed with therapy. Personally I think I could use a couple of days off but we'll see. Jill ran into Bonnie, BB's head nurse, who of course attributed my constipation and complications on the sedation I insist on for the bone marrows. Meanwhile the anesthesiologists all tell me that they do those procedures with anesthesia all the time and that I shouldn't be "bullied" into not using them. So I'm sticking to my guns. They may want to do another bone marrow next week -- and if they do, they'll do it with me asleep, plain and simple. :)
My friend Gordon has come out to relieve Jill, who left very early this morning. We watched UCLA squeak by VCU last night in the tourney and will watch them hopefully beat Villanova on Saturday. Otherwise, not much on the docket.
More news as it develops. Thanks to all for your support!
A lot (mostly good) has happened in the last 24 hours:
* I continue to feel better following back surgery and while the back is still quite tender where they did the work, other than some stiffness and soreness there I'm feeling pretty good.
* I am off Dilaudid and am relying instead on a fairly minor continuous dose of Fentanyl delivered via patches on my shoulder. I will have oral Dilaudid in case of breakthrough pain but basically I'm off the IV. This means I can type a lot better, too. :) It's amazing how thick a fog that stuff puts one in. I still can't think lucidly enough to construct that previous sentence without ending it in a preposition, but things are improving.
* My blood numbers are stabilizing. I got another pint of blood yesterday, my platelets continue to go up, my electrolytes are reaching normal ranges, my white cell count is still on the high side at 22 and change but coming down. Everything is as expected there.
* I checked out the bloodflow in my legs via doppler/ultrasound to make sure the pain I felt in my left leg was coincidental with back surgery rather than bloodclot-related. Everything looks good.
* Turd the Merciless tried to mount another attack but we kept in front of the constipation with Lactulose so all systems are working.
Hopefully, I will be released from the hospital today. BB came by yesterday and seemed to think I could be released immediately but he then acknowledged I had to get off the IV medication, which I've now done. He seemed very interested in rapidly doing another bone marrow and PET scan to "re-stage me" and then proceed with therapy. Personally I think I could use a couple of days off but we'll see. Jill ran into Bonnie, BB's head nurse, who of course attributed my constipation and complications on the sedation I insist on for the bone marrows. Meanwhile the anesthesiologists all tell me that they do those procedures with anesthesia all the time and that I shouldn't be "bullied" into not using them. So I'm sticking to my guns. They may want to do another bone marrow next week -- and if they do, they'll do it with me asleep, plain and simple. :)
My friend Gordon has come out to relieve Jill, who left very early this morning. We watched UCLA squeak by VCU last night in the tourney and will watch them hopefully beat Villanova on Saturday. Otherwise, not much on the docket.
More news as it develops. Thanks to all for your support!
Thursday, March 19, 2009
Well.......crap. : (
So my back hurt all night long. I asked for (and was given) a copy of my labs this morning and there are a couple of numbers outta whack.
My white blood count is still at around 23.5, which is high but not unexpectedly so. The red counts are all low, again not unexpected. The real bummer is that the C-Reactive Protein (a measure of inflammation and infection) had been plummeting nicely and instead of continuing to fall, it's reversed directions on us. Normal is around 8-12; mine had been as high as 260 upon admission to hospital; was at 12 yesterday but today it's more like 30. PLUS I've got a bit of a fever.
I hope the pain in my back isn't an infection at the surgical site.
More to come as it arrives.
Best,
Nick
My white blood count is still at around 23.5, which is high but not unexpectedly so. The red counts are all low, again not unexpected. The real bummer is that the C-Reactive Protein (a measure of inflammation and infection) had been plummeting nicely and instead of continuing to fall, it's reversed directions on us. Normal is around 8-12; mine had been as high as 260 upon admission to hospital; was at 12 yesterday but today it's more like 30. PLUS I've got a bit of a fever.
I hope the pain in my back isn't an infection at the surgical site.
More to come as it arrives.
Best,
Nick
Wednesday, March 18, 2009
Fiddlesticks.....or #%&*%$@%&!!!! OUCH!!!!!!!!!
I awoke this morning after anxious dreams to learn I had been transformed into a giant cockroach.
With apologies to Kafka, I should have it so good.
I went to bed last night and barely got any rest. We are still working through the logistics of the kids and that's very, very difficult for us all, especially Jill who is such a doting mother that separation is just gut-wrenching. We got through noodling some potential solutions there at around 1AM, which I figured would be good timing since I get about four hours out of sleep out of Dilaudid and Ativan. Sure enough, I woke up around 5AM and had the usual battery of blood draws and tests done.
I had met yesterday with a doctor from anaesthesiology to get consent for the procedure. I hadn't yet met with the doctor doing the vertebroplasty but I wasn't that concerned. However, now I'm to the point of being wheeled out of my room having received my good-bye kiss from the antiobiotic IV and still I haven't spoken with the surgeon.
In the pre-op room, we learned (1) they originally had me scheduled to replace my Cook catheter with a Quinton catheter (very interesting since we were doing the OPPOSITE!) and (2) I actually have FOUR compression fractures in my vertebrae...not just the two that we'd been told about. T4 (or 5?), T10, L3 and L4. I was a little unnerved by these late developments...but I was also unnerved by the fact that the anaesthesiologist couldn't decide whether or not to put me totally under general. After arguing for so long on so many procedures for MORE sedation, it was odd to feel nervous about the amount I would be getting.
Anyhow, sooner or later everything got taken care of and two hours later I was back in my room. They changed out the catheter correctly, and did something on my back because I AM IN FREAKIN' AGONY HERE!!!!!! The good news is I am able to cough without feeling like my back is going to split in half, so I don't need to worry about pneumonia. The bad news is my back is KILLING ME. I am hopeful, and there is a good deal of precedence for this, that it will improve overnight...provided I can actually get some sleep. Before the surgery, I would find a reasonably comfortable position (say pain = 2 on a 10 scale) and hang on as long as I could before it began to deteriorate, ending in a coughing fit and pain of say, 7 or 8. Now I am a constant 5. No relief...no respite.
Jill says the swelling in my back has gone down and that's a good sign...so hopefully tomorrow will be a fresh start, a new day, and all that happy horses**t =. :)
We'll find a way. One way or another.
Thanks to all for your continued support!
Gregor the sentient cockroach, signing off.
With apologies to Kafka, I should have it so good.
I went to bed last night and barely got any rest. We are still working through the logistics of the kids and that's very, very difficult for us all, especially Jill who is such a doting mother that separation is just gut-wrenching. We got through noodling some potential solutions there at around 1AM, which I figured would be good timing since I get about four hours out of sleep out of Dilaudid and Ativan. Sure enough, I woke up around 5AM and had the usual battery of blood draws and tests done.
I had met yesterday with a doctor from anaesthesiology to get consent for the procedure. I hadn't yet met with the doctor doing the vertebroplasty but I wasn't that concerned. However, now I'm to the point of being wheeled out of my room having received my good-bye kiss from the antiobiotic IV and still I haven't spoken with the surgeon.
In the pre-op room, we learned (1) they originally had me scheduled to replace my Cook catheter with a Quinton catheter (very interesting since we were doing the OPPOSITE!) and (2) I actually have FOUR compression fractures in my vertebrae...not just the two that we'd been told about. T4 (or 5?), T10, L3 and L4. I was a little unnerved by these late developments...but I was also unnerved by the fact that the anaesthesiologist couldn't decide whether or not to put me totally under general. After arguing for so long on so many procedures for MORE sedation, it was odd to feel nervous about the amount I would be getting.
Anyhow, sooner or later everything got taken care of and two hours later I was back in my room. They changed out the catheter correctly, and did something on my back because I AM IN FREAKIN' AGONY HERE!!!!!! The good news is I am able to cough without feeling like my back is going to split in half, so I don't need to worry about pneumonia. The bad news is my back is KILLING ME. I am hopeful, and there is a good deal of precedence for this, that it will improve overnight...provided I can actually get some sleep. Before the surgery, I would find a reasonably comfortable position (say pain = 2 on a 10 scale) and hang on as long as I could before it began to deteriorate, ending in a coughing fit and pain of say, 7 or 8. Now I am a constant 5. No relief...no respite.
Jill says the swelling in my back has gone down and that's a good sign...so hopefully tomorrow will be a fresh start, a new day, and all that happy horses**t =. :)
We'll find a way. One way or another.
Thanks to all for your continued support!
Gregor the sentient cockroach, signing off.
Tuesday, March 17, 2009
A quick aside...
...the evening shift nurse these past few nights is a very nice guy. Extremely knowledgeable. Kind to a fault. Likes to chat.
The kind of nurse that you hear about with a trail of death behind him and a big tupperware drum full of biceps in his attic.
Just sayin'.
The kind of nurse that you hear about with a trail of death behind him and a big tupperware drum full of biceps in his attic.
Just sayin'.
Bad to the bone...
Some good, and some mostly crummy details on the eve of my back surgery.
First, the final count on stem cell collection was 28 mil stem cells. Assuming I don't change the surface area of my body too much (i.e. by getting fat) this should provide me with enough cells or 7 to 8 transplants should that be necessary. The current protocol envisions two. The remaining cells will be kept indefinitely and could be used for long term autologous transplants down the road, or for entirely different uses, some of which may not be disease related at all.
I'm a little concerned about my ability to type -- it's taken a real blow these last couple of weeks and I am hoping it's just one part being out of practice and one part sitting in the wrong position or it could have a real impact on my typing speed and potentially other elements of manual dexterity upon which I rely (i.e. guitar, piano, etc.)
The doctor delivered some sobering news about my back today -- we all still expect a high likelihood of a full recovery, but she cautioned that it might not be 100% fixed after one procedure, and perhaps worse that the back is still going to be weak for the next couple of years. I'll need to go on something like Zometa, which is a bone strengthener typically given to little old ladies for ostheoperosis. This will help strengthen the bone but has a lot of complications -- I can't have any oral surgery, for example -- which is a non-trivial concern given that there may be a root canal in the next few years on my left side. Oh well...this is the new reality.
The other depressing aspect of the new reality is that I won' be able to play with my kids as actively as I had hoped -- indeed as actively as I had told Parker. A lot of the simple but strenuous stuff we used to do together will be off limits for at least a couple of years.
Coughing is still a nightmare -- there are still sheets of phlegm in there that need to come out but which are stubborn and without the strength in my back to sustain a concerted effort to get rid of it all, it's lingering. Nonetheless, an important infection marker in my blood is coming down so that's a good sign where the lung infection is concerned. I am back on an antiviral medication that will hopefully help me get rid of it the rest of the way.
I did't have the presence of mind to ask about golf or tennis but I hope both these activities are greenlit -- running was not approved, for example.
: (
First, the final count on stem cell collection was 28 mil stem cells. Assuming I don't change the surface area of my body too much (i.e. by getting fat) this should provide me with enough cells or 7 to 8 transplants should that be necessary. The current protocol envisions two. The remaining cells will be kept indefinitely and could be used for long term autologous transplants down the road, or for entirely different uses, some of which may not be disease related at all.
I'm a little concerned about my ability to type -- it's taken a real blow these last couple of weeks and I am hoping it's just one part being out of practice and one part sitting in the wrong position or it could have a real impact on my typing speed and potentially other elements of manual dexterity upon which I rely (i.e. guitar, piano, etc.)
The doctor delivered some sobering news about my back today -- we all still expect a high likelihood of a full recovery, but she cautioned that it might not be 100% fixed after one procedure, and perhaps worse that the back is still going to be weak for the next couple of years. I'll need to go on something like Zometa, which is a bone strengthener typically given to little old ladies for ostheoperosis. This will help strengthen the bone but has a lot of complications -- I can't have any oral surgery, for example -- which is a non-trivial concern given that there may be a root canal in the next few years on my left side. Oh well...this is the new reality.
The other depressing aspect of the new reality is that I won' be able to play with my kids as actively as I had hoped -- indeed as actively as I had told Parker. A lot of the simple but strenuous stuff we used to do together will be off limits for at least a couple of years.
Coughing is still a nightmare -- there are still sheets of phlegm in there that need to come out but which are stubborn and without the strength in my back to sustain a concerted effort to get rid of it all, it's lingering. Nonetheless, an important infection marker in my blood is coming down so that's a good sign where the lung infection is concerned. I am back on an antiviral medication that will hopefully help me get rid of it the rest of the way.
I did't have the presence of mind to ask about golf or tennis but I hope both these activities are greenlit -- running was not approved, for example.
: (
Monday, March 16, 2009
STILL WAITING...
Where the hell IS Godot anyway? I am having a hell of a time concentrating on typing (literally three out of four keystrokes are wrong because of the influence of the Dilaudid) and the door seems to open every six minutes between housekeeping, food orders, food deliver, food pickup, food review, nurses, clinicians, doctors making rounds, plus blood being drawn, cultures being run, lab results being delivered, vital signs being checked, linens being changed, etc.
Ugh. Anyhow, the latest news is that my vertebroplasty has been scheduled for Wednesday sometime. There's simply no way to do it before then. On the plus side, I'll have extremely skilled doctors performing the procedure and I will be able to do both the vertebroplasty and central venus catheter replacement at the same time under conscious sedation. The doctor performing the vertebroplasty has done more of these than any other doctor in the world.
Meanwhile my beard keeps coming out in groups of a dozen little hairs at a time. Soon, in the words of Montgomery Burns, I'll be as "bald as a plucked chicken."
Thanks to all for your continued support and interest. I'll keep you posted on things as they develop.
Ugh. Anyhow, the latest news is that my vertebroplasty has been scheduled for Wednesday sometime. There's simply no way to do it before then. On the plus side, I'll have extremely skilled doctors performing the procedure and I will be able to do both the vertebroplasty and central venus catheter replacement at the same time under conscious sedation. The doctor performing the vertebroplasty has done more of these than any other doctor in the world.
Meanwhile my beard keeps coming out in groups of a dozen little hairs at a time. Soon, in the words of Montgomery Burns, I'll be as "bald as a plucked chicken."
Thanks to all for your continued support and interest. I'll keep you posted on things as they develop.
Sunday, March 15, 2009
Waiting for Godot...
Now I'm just waiting for the vertebraeplasty, which can hopefully be performed tomorrow, after which I'll be discharged. It's hard to tie anybody down because it's the weekend, and there's still no certainty, but hopefully tomorrow I'll get in, get conscious sedation and get both my back fixed and my line switched back out from the big ol' honkin' Quinton catheter to the smaller Cook catheter.
My beard, which had been staying the same length for the past two weeks, is now falling out. To be expected, of course, but for some reason there's an odd sense of finality to it. When I wipe my hand across my cheek, a poof of little hairs comes out. Well, as I said, I've been expecting it so no biggie.
That's probably all the news that's fit to print until I'm either (a) discharged from the hospital, or (b) other complications prevent the former from happening. So hopefully I'll be writing to you from my apartment in the next couple of days.
Thanks again for your interest and support!!
My beard, which had been staying the same length for the past two weeks, is now falling out. To be expected, of course, but for some reason there's an odd sense of finality to it. When I wipe my hand across my cheek, a poof of little hairs comes out. Well, as I said, I've been expecting it so no biggie.
That's probably all the news that's fit to print until I'm either (a) discharged from the hospital, or (b) other complications prevent the former from happening. So hopefully I'll be writing to you from my apartment in the next couple of days.
Thanks again for your interest and support!!
Saturday, March 14, 2009
Harvester of Sorrow...
I awoke this morning to the dulcet tones of two orderlies telling me they'd be coming back to bring me to apheresis shortly. I had two small bowls of raisin bran to make sure all systems were good to go, and I had them hit me with some Ativan (anti-nausea so as to accommodate a whole lotta painkiller) and Dilaudid (said painkiller). By the way, I have lost between 20-25 pounds and hope to keep it off. If I can tighten the belly just a little bit I'll look pretty darn good, I think. Though my expectation levels have been reset on my hair based on responses to that picture -- although my darling wife says I look like the doctor guy from Lost, some other messages indicate these sweetly-deranged comments could be a side-effect of marriage. :) I guess I'm a guy who needs his hair. Which is fine -- I bargained time for it to return in my overall calendar, and in the meantime, it will make shaving easier.
Apheresis is a completely painless, if dull, process through which the cells are removed via the Quinton Catheter now in my neck, separated in a centrifuge and returned to the bloodstream minus the immature "stem cells" (those which are capable of forming any type of blood cell). These are set aside for a part of the procedure down the road.
Dr. ML at Cedars' Sinai -- he of the gloomy outlook -- had suggested one of the limiting factors in how long they can keep someone alive with MM is the fact that it gets more difficult to harvest cells from patients that have already donated. Generally it can take 3-4 m cells per sq meter of body surface (an odd measurement upon which I have ruminated elsewhere in this blog). Also, there is only so much room to store samples. Lastly, the use of drugs like Revlimid, which are preferable to Thalidomide for therapy, make it difficult for a body to properly secrete these stem cells.
I had a productive harvest yesterday. I was in the chair for about four hours, during which time we watched some Lost episodes. This morning, I was informed that my white counts were back up to 12.2 (huzzah!!! A robust immune system!!!) and that I yielded over 19 million stem cells yesterday!! An addition to designating me an "overachieving stem cell donor", this virtually guaranteed that I needed no more than one more day (today) in the apheresis chamber. After today's harvest, I should have between 25-30 mil stem cells which should be enough for at least 7 transplants, including the two I need during this current therapy. Plus they will store all of them for me. Not too shabby!! :)
I no longer need the shots in the stomach to stimulate the growth, so that's one less painful procedure to deal with. Now it is really just a matter of getting my back fixed -- which could be challenging as it's been hurting like crazy lately and I'm sure that two weeks of being in here, terrified of coughing and gasping desparately for air when I do, probably hasn't helped. We should find out when my vertebraeplasty is scheduled -- with luck, it will be done Monday and then I'll be out of the hospital on Tuesday.
Then we'll take some amount of bridging therapy (thalidomide, dexamethasone, or potentially velcade) and wait for my body to fully recover (appetite, strength, etc.) before the next onslaught of high-dose chemo. I'm ready.
And this time I'm taking some kind of anti-conspitation drug!!! :)
Apheresis is a completely painless, if dull, process through which the cells are removed via the Quinton Catheter now in my neck, separated in a centrifuge and returned to the bloodstream minus the immature "stem cells" (those which are capable of forming any type of blood cell). These are set aside for a part of the procedure down the road.
Dr. ML at Cedars' Sinai -- he of the gloomy outlook -- had suggested one of the limiting factors in how long they can keep someone alive with MM is the fact that it gets more difficult to harvest cells from patients that have already donated. Generally it can take 3-4 m cells per sq meter of body surface (an odd measurement upon which I have ruminated elsewhere in this blog). Also, there is only so much room to store samples. Lastly, the use of drugs like Revlimid, which are preferable to Thalidomide for therapy, make it difficult for a body to properly secrete these stem cells.
I had a productive harvest yesterday. I was in the chair for about four hours, during which time we watched some Lost episodes. This morning, I was informed that my white counts were back up to 12.2 (huzzah!!! A robust immune system!!!) and that I yielded over 19 million stem cells yesterday!! An addition to designating me an "overachieving stem cell donor", this virtually guaranteed that I needed no more than one more day (today) in the apheresis chamber. After today's harvest, I should have between 25-30 mil stem cells which should be enough for at least 7 transplants, including the two I need during this current therapy. Plus they will store all of them for me. Not too shabby!! :)
I no longer need the shots in the stomach to stimulate the growth, so that's one less painful procedure to deal with. Now it is really just a matter of getting my back fixed -- which could be challenging as it's been hurting like crazy lately and I'm sure that two weeks of being in here, terrified of coughing and gasping desparately for air when I do, probably hasn't helped. We should find out when my vertebraeplasty is scheduled -- with luck, it will be done Monday and then I'll be out of the hospital on Tuesday.
Then we'll take some amount of bridging therapy (thalidomide, dexamethasone, or potentially velcade) and wait for my body to fully recover (appetite, strength, etc.) before the next onslaught of high-dose chemo. I'm ready.
And this time I'm taking some kind of anti-conspitation drug!!! :)
Friday, March 13, 2009
What a long, strange trip it's been! (warning: lighthearted scatalogical humor in this storyline)
So sorry for the delay between responses but as you will no doubt discern, there have been reasons for the delay. I have no intention of giving birth to the Great American Novel, no desire to employ literary devices stolen from Cervantes (a story within a story? no thanks), no need for ornate medical devices tied back into the Merovingian Bloodline Conspiracy exploited in Umberto Eco or Dan Brown, etc.
No, I merely got very sick and that took me out of commission for a while.
On the weekend of February 20th or so (that Sunday to be precise) Jill had gone off to the store in a valiant effort to keep the apartment stocked with healthy alternatives. Sadly, while very well-intentioned, this all went out the window and as I write this I can jealously smell Jill's donut holes from Krispy Kreme's wafting in over the comparatively dull strawberry pure juice bar that I'm eating. Anyhow, the events of that particular date had nothing to do with either strawberries or donuts...rather, they had to do with some of varmint casserrole (my money in these parts is always on possum [sic]). The astute readers among you will note I already made this leap of logic in my post at the time.
I had found a bloc of old war movies to watch on TCM -- Bridge on the River Kwai was playing at the time, when the fire alarm went off. I leapt to my feet to pull some jeans on and that's when I noticed that painful, stiff, sickly warmth that had first washed over my back when I was golfing back around Thanksgiving. I could barely make it into my jeans, but somehow I managed to negotiate 10 flights of stairs down and out of the building with a resolve that Alec Guinness' colonel could only have been proud of -- only to learn that the source of the fire was a gruff older man's wife [ed. we'll call her Sniffy]. The gruff old man kept mumbling about how mortified Sniffy was...and as put out as we all were, I couldn't really bring myself to ask what kind of varmint was being prepared. I waited interminably for an elevator (not gonna put ten more flights on stairs on this back!) and sooner or later, found myself back in my apartment in one piece. When Jill came back later that afternoon, we resolved to report the painful back episode to the doctor the next day.
When we met with the doctor (the one who suggested Cymbalta), he was going to have a bone density scan run, plus the standard post-Velcade bone marrow scan / gene array, plus an MRI for the back pain, etc., etc. Long-story short, the bone marrow went off without a hitch, as did installation of the central Cook Catheter, a three-aperture port in my neck which sounds pretty gnarly but which was actually a GODSEND -- no more needles! Everything from draws, to cultures, to insertions of isotopes for PET Scans, inserts of magnetic contrast for MRIs, IV pushes, etc. All soup to nuts painlessly taken from that one access point. However, the MRI was never actually scheduled and fell through the cracks [cue ominous and foreboding music].
My brother Peter had come out the weekend of the 27th and 28th to give Jill a few much-needed days back with the kids, which was remarkably nice of him. The bone density scan looked okay so there was no explanation for the back pain, which was worsening. I figured it was weakening bones and I let people know about it -- in any case, I was in treatment now, thank God. I remember it was almost like me taunting the cancer at this point. Mocking it. "Bring it on," that sort of thing.
Peter and I had a blast. We ate good food (including sushi), had tasty beer, watched a lot of old movies, laughed until we cried at everything from family members to some of the aforementioned movies, and had an altogether wonderful time. By the time he left, however, at the risk of being blunt, the ol' bear hadn't visited the woods in about five days. I had been warned that the chemo, painkillers, Thalidomide and various other drugs have a tendency to "bind you up"-- but who takes those things seriously, you know? Nonetheless, I had told the nurses in conspiritorial tones in the infusion center the previous day and they had prescribed something called Magnesium Citrate -- which Peter and I discerned is essentially the same thing as solid rocket booster fuel. Directions: drink half bottle, grip toilet bowl for dear life, brace yourself.
After the first prescription (which was filled in largely the same manner that weapons-grade uranium is conveyed between laboratories) was used up, I was given another bottle as well as a smaller bottle of something called "Flowmax." Somehow, this smaller bottle with the simpler label looked far more frightening than the fancy multi-syllabic name of the first solid-rocket-fuel-meets-colon-cleanser. At any rate, after a couple of more doses, a tiny little squeak emerged from the mighty apparatus so while I wasn't sure I'd be able to stop once I got started, I was likewise certain I wasn't doomed to some forgotten sphinctreless chapter of Milton's Paradise Lost. Jill had returned from Los Angeles, and panic started to subside...
Until that evening, when I woke at 1AM buckled over in pain, unable to move, stand up, sit down, roll over, or do anything. We called the doctor. He agreed that even one little toot was progress, but that I should get in there for pain treatment if nothing else. And so shortly after 1AM, March 2nd, we checked into the emergency room at the University of Arkansas for Medical Sciences. Soon after we arrived, they admitted me to the hospital (but of course we had to wait 9 hours in the ER for a room).
My gut was KILLING ME. I felt like I was having a baby. Ladies, my hats are off to you. The pain was literally coming and going in waves. I had Jill walking me through Lamaze breathing exercises in order to make it through this colossal impending dump that was threatening to turn me into Dr. Jekyll and a nightmarish Mr. Turd, bounding around committing atrocities. I was literally focusing my breathing so the horrible turd-like Eye of Sauron inside me would turn its back on me long enough for me to return the one ring of Flowmax to the forges of Mordor.
Despite my protestations, the clinicians moved me from one stretcher to another one to take a chest x-ray. I remembered every funny urban myth "poop" story about college athletes coming back to me at once now. Somehow none of them were funny any longer.
The GOOD news is that there didn't appear to be a bowel obstruction. So now we just had to keep taking the Exploducon 6000 until it had time to work its magic, and manage the extreme pain in the meantime. We tried Morphine. Nothing. We upped the dose. I literally heard the poop laughing at us. "Pathetic earthlings," bellowed Turd the Merciless from within. "Who can save you now?" Normally, this would be funny -- you know...haha, talking poo, hahahaha. Not in this case. I was filled with the fear of the grave in a vey real sense.
We increased to a new medicine...Dilaudid. This stuff is STRONG and had worked for Jill when she had viral meningitis the previous summer. And it worked for me...but unfortunately in between doses we noticed that which the gas pain had not allowed us to focus on previously: there was something very wrong with my back.
They scheduled me for an MRI Thursday the 5th. On the 3rd and 4th I basically toughed it out on meds and watched my blood numbers change daily. All of this information seemed good. Of course I would be getting the PET Scan on the 5th as well, which I couldn't wait to see since BB's data shows a very, very high correlation between long-term successful outcome and reduction in focal lesions from the test Velcade and Melphalan.
Bear in mind, I've also got falling white counts (and platelets, red blood counts, etc) this whole time because I'm now neutropenic. This is important for two reasons: (a) I am constantly fighting off infections, and (b) I have a constant wet, hacking cough. Now -- quick question: your back is killing you and you cough uncontrollably; when you cough, do you feel (a) terrific, (b) fair, (c) in unspeakable agony??????
So I'm in the MRI answering "C!" to this in my head over and over and somehow by the grace of God and a ton of Dilaudid I get through the MRI -- which confirms that I have a partially collapsed left lung, bilateral pneumonia (explains cough) and two broken lumbar vertebrae (explains horrible pain in back).
By now, though, I am fully neutropenic. I negotiate waking sedation for the PET scan because without this, there's no way I can hold still for them to get a reading. While initially not happy about it (because it delays his protocol) BB sees the logic in this and schedules the PET with conscious sedation for the evening of the 6th. Of course any procedure done to correct my back pain is too risky since I couldn't fight off any ensuing infection and so I am left to strike a delicate balance between Dilaudid and Ativan which is used to help sleep and fight nausea (without contributing to constipation!).
Meanwhile, I am getting twice-a-day shots in the belly to stimulate blood growth factors and to mobilize the blood stem cells from the marrow into the blood stream where they can be easily harvested for use in high-dose transplants that are upcoming. The quality and pain of these shots vary by nursing staff but most of them aren't all that bad. With no platelets, the belly does bruise rather nastily, though...I look like I got shot in the belly with one of those anti-personnel crowd dispersion devices.
Speaking of the nursing staff...they are delightful, by and large, particularly on the Myeloma floor where their dedication to patient care is extremely evident. I have only very nice things to say about them.
Well, and also one funny thing.
One woman who comes from a former Soviet republic doesn't have perfect mastery of the King's English. She was just going through all of the horrible things that can happen to me from doing a procedure while neutropenic (i.e. no immune system, no ability to overcome more trivial infection, etc.). At one point she say "I am now to walk from room to get lab results for you." She leaves the room and then comes back about three minutes later, looking very serious.
Stonefaced and Stalinesque she says "There is something I mus to tell you."
"Y-yes?????" I asked, trepidatious about the labs even as they were just routine.
"We have harpist."
Great. If I need a little "pick me up / shuffle" from some nonagenarian harpist of Armenian descent that looks like a key part in one of the early Woody Allen movies to lighten my day, I'll be sure to call. Just the other day I was reminiscing abot Pappy Boyington's squadron runs over the balkans and ondering what hapened to that little Azerbaijete Susie May Glotzsomanjanian?
Sooooooooo....with all that said and done, where are we as of Friday, March 13, 8:14PM Pacific?
1. The PET scan showed complete absence of all the focal lesions identified during my trip / scan /the week of Jan 24th. This is HUGLEY good news. First, in the qualitative sense, it means all seven of the clusters of cancer cells that were observed a few weeks ago are now obliterated. Nada. Nothin. That means there will be no more pain. No rib pain. No back pain. Nothin'. QUANTITATIVELY it is an even BIGGER deal. There is a "very, very high correlation" between this finding and long-term, deep, sustained remission / curative potential of the total therapy protocol.
BB came to share his excitement about this. He was patting my head and playfully pulled out a tiny clump of hair. He told the nurse on duty to order a haircut for me so I don't look like a homeless person. :) With this in mind, I had the building's stylist come by. He was kind enough to give me the skin-job haircut -- I tipped him well and told him to use it for a child who couldn't afford it.
2. I responded very well to chemo with manageable side effects -- but for the back pain, which shouldn't be there next time 'round, and the constipation which I now know to look out for, I'd have more or less skated through.
3. I am doing very well with harvesting and should be done after my session tomorrow with enough bags of stem cells for 6+ transplants in the future (total therapy doesn't envision needing more than two, but also anticipates future harvesting to be difficult given the amount of Revlimid and other drugs being used today).
4. I should be getting my back fixed via a simple procedure called a vertebraplasty on Monday or Tuesday, after which the back should no longer be an issue. And then I can finally get out of the hospital and go back to the Little Rock condo.
5. I anticipate beginning high-dose Melphalan plus transplant (the first of two) late next week.
THANK YOU VERY MUCH for your patience. I'm sorry it has taken me so long to update this but as you can see, there's been a lot going on and I did want a little bit of the suspense and limbo to come through and to preserve the reality of the experience. You folks are wonderful friends and an amazing source of strength and inspiration.
No, I merely got very sick and that took me out of commission for a while.
On the weekend of February 20th or so (that Sunday to be precise) Jill had gone off to the store in a valiant effort to keep the apartment stocked with healthy alternatives. Sadly, while very well-intentioned, this all went out the window and as I write this I can jealously smell Jill's donut holes from Krispy Kreme's wafting in over the comparatively dull strawberry pure juice bar that I'm eating. Anyhow, the events of that particular date had nothing to do with either strawberries or donuts...rather, they had to do with some of varmint casserrole (my money in these parts is always on possum [sic]). The astute readers among you will note I already made this leap of logic in my post at the time.
I had found a bloc of old war movies to watch on TCM -- Bridge on the River Kwai was playing at the time, when the fire alarm went off. I leapt to my feet to pull some jeans on and that's when I noticed that painful, stiff, sickly warmth that had first washed over my back when I was golfing back around Thanksgiving. I could barely make it into my jeans, but somehow I managed to negotiate 10 flights of stairs down and out of the building with a resolve that Alec Guinness' colonel could only have been proud of -- only to learn that the source of the fire was a gruff older man's wife [ed. we'll call her Sniffy]. The gruff old man kept mumbling about how mortified Sniffy was...and as put out as we all were, I couldn't really bring myself to ask what kind of varmint was being prepared. I waited interminably for an elevator (not gonna put ten more flights on stairs on this back!) and sooner or later, found myself back in my apartment in one piece. When Jill came back later that afternoon, we resolved to report the painful back episode to the doctor the next day.
When we met with the doctor (the one who suggested Cymbalta), he was going to have a bone density scan run, plus the standard post-Velcade bone marrow scan / gene array, plus an MRI for the back pain, etc., etc. Long-story short, the bone marrow went off without a hitch, as did installation of the central Cook Catheter, a three-aperture port in my neck which sounds pretty gnarly but which was actually a GODSEND -- no more needles! Everything from draws, to cultures, to insertions of isotopes for PET Scans, inserts of magnetic contrast for MRIs, IV pushes, etc. All soup to nuts painlessly taken from that one access point. However, the MRI was never actually scheduled and fell through the cracks [cue ominous and foreboding music].
My brother Peter had come out the weekend of the 27th and 28th to give Jill a few much-needed days back with the kids, which was remarkably nice of him. The bone density scan looked okay so there was no explanation for the back pain, which was worsening. I figured it was weakening bones and I let people know about it -- in any case, I was in treatment now, thank God. I remember it was almost like me taunting the cancer at this point. Mocking it. "Bring it on," that sort of thing.
Peter and I had a blast. We ate good food (including sushi), had tasty beer, watched a lot of old movies, laughed until we cried at everything from family members to some of the aforementioned movies, and had an altogether wonderful time. By the time he left, however, at the risk of being blunt, the ol' bear hadn't visited the woods in about five days. I had been warned that the chemo, painkillers, Thalidomide and various other drugs have a tendency to "bind you up"-- but who takes those things seriously, you know? Nonetheless, I had told the nurses in conspiritorial tones in the infusion center the previous day and they had prescribed something called Magnesium Citrate -- which Peter and I discerned is essentially the same thing as solid rocket booster fuel. Directions: drink half bottle, grip toilet bowl for dear life, brace yourself.
After the first prescription (which was filled in largely the same manner that weapons-grade uranium is conveyed between laboratories) was used up, I was given another bottle as well as a smaller bottle of something called "Flowmax." Somehow, this smaller bottle with the simpler label looked far more frightening than the fancy multi-syllabic name of the first solid-rocket-fuel-meets-colon-cleanser. At any rate, after a couple of more doses, a tiny little squeak emerged from the mighty apparatus so while I wasn't sure I'd be able to stop once I got started, I was likewise certain I wasn't doomed to some forgotten sphinctreless chapter of Milton's Paradise Lost. Jill had returned from Los Angeles, and panic started to subside...
Until that evening, when I woke at 1AM buckled over in pain, unable to move, stand up, sit down, roll over, or do anything. We called the doctor. He agreed that even one little toot was progress, but that I should get in there for pain treatment if nothing else. And so shortly after 1AM, March 2nd, we checked into the emergency room at the University of Arkansas for Medical Sciences. Soon after we arrived, they admitted me to the hospital (but of course we had to wait 9 hours in the ER for a room).
My gut was KILLING ME. I felt like I was having a baby. Ladies, my hats are off to you. The pain was literally coming and going in waves. I had Jill walking me through Lamaze breathing exercises in order to make it through this colossal impending dump that was threatening to turn me into Dr. Jekyll and a nightmarish Mr. Turd, bounding around committing atrocities. I was literally focusing my breathing so the horrible turd-like Eye of Sauron inside me would turn its back on me long enough for me to return the one ring of Flowmax to the forges of Mordor.
Despite my protestations, the clinicians moved me from one stretcher to another one to take a chest x-ray. I remembered every funny urban myth "poop" story about college athletes coming back to me at once now. Somehow none of them were funny any longer.
The GOOD news is that there didn't appear to be a bowel obstruction. So now we just had to keep taking the Exploducon 6000 until it had time to work its magic, and manage the extreme pain in the meantime. We tried Morphine. Nothing. We upped the dose. I literally heard the poop laughing at us. "Pathetic earthlings," bellowed Turd the Merciless from within. "Who can save you now?" Normally, this would be funny -- you know...haha, talking poo, hahahaha. Not in this case. I was filled with the fear of the grave in a vey real sense.
We increased to a new medicine...Dilaudid. This stuff is STRONG and had worked for Jill when she had viral meningitis the previous summer. And it worked for me...but unfortunately in between doses we noticed that which the gas pain had not allowed us to focus on previously: there was something very wrong with my back.
They scheduled me for an MRI Thursday the 5th. On the 3rd and 4th I basically toughed it out on meds and watched my blood numbers change daily. All of this information seemed good. Of course I would be getting the PET Scan on the 5th as well, which I couldn't wait to see since BB's data shows a very, very high correlation between long-term successful outcome and reduction in focal lesions from the test Velcade and Melphalan.
Bear in mind, I've also got falling white counts (and platelets, red blood counts, etc) this whole time because I'm now neutropenic. This is important for two reasons: (a) I am constantly fighting off infections, and (b) I have a constant wet, hacking cough. Now -- quick question: your back is killing you and you cough uncontrollably; when you cough, do you feel (a) terrific, (b) fair, (c) in unspeakable agony??????
So I'm in the MRI answering "C!" to this in my head over and over and somehow by the grace of God and a ton of Dilaudid I get through the MRI -- which confirms that I have a partially collapsed left lung, bilateral pneumonia (explains cough) and two broken lumbar vertebrae (explains horrible pain in back).
By now, though, I am fully neutropenic. I negotiate waking sedation for the PET scan because without this, there's no way I can hold still for them to get a reading. While initially not happy about it (because it delays his protocol) BB sees the logic in this and schedules the PET with conscious sedation for the evening of the 6th. Of course any procedure done to correct my back pain is too risky since I couldn't fight off any ensuing infection and so I am left to strike a delicate balance between Dilaudid and Ativan which is used to help sleep and fight nausea (without contributing to constipation!).
Meanwhile, I am getting twice-a-day shots in the belly to stimulate blood growth factors and to mobilize the blood stem cells from the marrow into the blood stream where they can be easily harvested for use in high-dose transplants that are upcoming. The quality and pain of these shots vary by nursing staff but most of them aren't all that bad. With no platelets, the belly does bruise rather nastily, though...I look like I got shot in the belly with one of those anti-personnel crowd dispersion devices.
Speaking of the nursing staff...they are delightful, by and large, particularly on the Myeloma floor where their dedication to patient care is extremely evident. I have only very nice things to say about them.
Well, and also one funny thing.
One woman who comes from a former Soviet republic doesn't have perfect mastery of the King's English. She was just going through all of the horrible things that can happen to me from doing a procedure while neutropenic (i.e. no immune system, no ability to overcome more trivial infection, etc.). At one point she say "I am now to walk from room to get lab results for you." She leaves the room and then comes back about three minutes later, looking very serious.
Stonefaced and Stalinesque she says "There is something I mus to tell you."
"Y-yes?????" I asked, trepidatious about the labs even as they were just routine.
"We have harpist."
Great. If I need a little "pick me up / shuffle" from some nonagenarian harpist of Armenian descent that looks like a key part in one of the early Woody Allen movies to lighten my day, I'll be sure to call. Just the other day I was reminiscing abot Pappy Boyington's squadron runs over the balkans and ondering what hapened to that little Azerbaijete Susie May Glotzsomanjanian?
Sooooooooo....with all that said and done, where are we as of Friday, March 13, 8:14PM Pacific?
1. The PET scan showed complete absence of all the focal lesions identified during my trip / scan /the week of Jan 24th. This is HUGLEY good news. First, in the qualitative sense, it means all seven of the clusters of cancer cells that were observed a few weeks ago are now obliterated. Nada. Nothin. That means there will be no more pain. No rib pain. No back pain. Nothin'. QUANTITATIVELY it is an even BIGGER deal. There is a "very, very high correlation" between this finding and long-term, deep, sustained remission / curative potential of the total therapy protocol.
BB came to share his excitement about this. He was patting my head and playfully pulled out a tiny clump of hair. He told the nurse on duty to order a haircut for me so I don't look like a homeless person. :) With this in mind, I had the building's stylist come by. He was kind enough to give me the skin-job haircut -- I tipped him well and told him to use it for a child who couldn't afford it.
2. I responded very well to chemo with manageable side effects -- but for the back pain, which shouldn't be there next time 'round, and the constipation which I now know to look out for, I'd have more or less skated through.
3. I am doing very well with harvesting and should be done after my session tomorrow with enough bags of stem cells for 6+ transplants in the future (total therapy doesn't envision needing more than two, but also anticipates future harvesting to be difficult given the amount of Revlimid and other drugs being used today).
4. I should be getting my back fixed via a simple procedure called a vertebraplasty on Monday or Tuesday, after which the back should no longer be an issue. And then I can finally get out of the hospital and go back to the Little Rock condo.
5. I anticipate beginning high-dose Melphalan plus transplant (the first of two) late next week.
THANK YOU VERY MUCH for your patience. I'm sorry it has taken me so long to update this but as you can see, there's been a lot going on and I did want a little bit of the suspense and limbo to come through and to preserve the reality of the experience. You folks are wonderful friends and an amazing source of strength and inspiration.
Saturday, February 28, 2009
Livin' it up at the Hotel Chemotherapy...
It's been a few days...I've been in a "chemo fog" for some time. The side effects are fairly manageable so far -- I had a pretty nasty case of the hiccups, of all things, but they prescribed a medicine for that. I have a bit of heartburn, also manageable by medicine. The rest is just being exhausted most of the time -- I've experienced, thus far, none of the "up and at 'em" that the dexamethasone is supposed to infuse --and thus none of the "roid rage" I've been concerned about. The exhausting does make it hard to focus, but I can live with it.
Oh, and then there's the pain. I think it must be associated with the heavy load on my kidneys but the lower back feels okay now, but directly above it, in both and back and the front, it's very painful to lie down, and painful to get up. I've been taking a little Oxycontin for it and that seems to help -- a LITTLE. The nurse says that it will be difficult to gauge pain for the next week or so because the pain from the disease will go down, but the pain from the meds will be present and when I start getting the twice-a-day growth shots to increase my blood counts, that is supposed to cause pain as well. Oh well. It will subside when it's ready.
Speaking of blood counts, I am happy to say that the elevated kidney activity that almost landed me in the hospital a few days ago is, in fact, related to the effectiveness of the treatment. My IgG (parts of immunoglobulin G per dL of blood) has falled from somewhere around 14,000 upon my arrival here to 8300. This is where it was at the beginning of January, and this is only after 1.5 full days on therapy. So far, so good.
I am on the bag for one more day, so hopefully by the time that is done, this number will be much lower already.
I'm noticing a teensy bit of neuropathy, most prominently in my left foot. I took the cymbalta yesterday and today but I will get the prescription for the B6 and folate on Monday and that should help as well.
Running out of energy for this blog. Thanks for all the email, phone calls and blog comments. I appreciate every one!
Oh, and then there's the pain. I think it must be associated with the heavy load on my kidneys but the lower back feels okay now, but directly above it, in both and back and the front, it's very painful to lie down, and painful to get up. I've been taking a little Oxycontin for it and that seems to help -- a LITTLE. The nurse says that it will be difficult to gauge pain for the next week or so because the pain from the disease will go down, but the pain from the meds will be present and when I start getting the twice-a-day growth shots to increase my blood counts, that is supposed to cause pain as well. Oh well. It will subside when it's ready.
Speaking of blood counts, I am happy to say that the elevated kidney activity that almost landed me in the hospital a few days ago is, in fact, related to the effectiveness of the treatment. My IgG (parts of immunoglobulin G per dL of blood) has falled from somewhere around 14,000 upon my arrival here to 8300. This is where it was at the beginning of January, and this is only after 1.5 full days on therapy. So far, so good.
I am on the bag for one more day, so hopefully by the time that is done, this number will be much lower already.
I'm noticing a teensy bit of neuropathy, most prominently in my left foot. I took the cymbalta yesterday and today but I will get the prescription for the B6 and folate on Monday and that should help as well.
Running out of energy for this blog. Thanks for all the email, phone calls and blog comments. I appreciate every one!
Wednesday, February 25, 2009
Wednesday: The Chemical Wedding
It got up this morning early, still exhausted from the doping the day before. If I can just make it through a couple of cycles of dex I can hopefully get past this horrible back pain.
We made it over to for the bone marrow. What with the holes in my neck, sedation was easy. I didn't feel a thing. I woke up and was pretty groggy -- but after about 45 minutes in recovery they decided I was okay to go over to the infusion center. Our schedule arrival time there was 11AM but we were there at 2:10! So I called the psychiatrist I'm scheduled to meet with at 2:30 for 4PM (knowing that would probably be a pipe dream). We figured I was out of the woods for nausea so we took 10 4mg tablets of dexamethasone. I feel neither irresponsibly rage-filled nor physically impressive. Phhhfft. Another mass media hype-job!
By the time they called us back, I needed a liter of something to combat my uric acid (now 11.3) and to bring down calclium (that was by a nasty subsutaneous injection). The good news is they thing the heightened kidney activity is a side effect of cancer cells rupturing and dumping calcium and uric acid in the blood stream. The Kidney's need help with that.
I also got another Velcade push, a shot in the belly (this one didn't hurt as much) for reducing risk of blood clots, and the final glory, being hooked up to the Platinum, Adriacycin, Cytoxin and Etoposide. Poison running through my veins, as Alice Cooper once sang.
I needed a bit more antinausea to combat all this so we've added a new pill, Ragazan or Ranmanazz or Rasputin -- can't remember which. Anyhow I'm support to take two pills per dose, four doses per day. And then cap it off with Thalidomide before I go to bed.
Hopefully tomorrow will be a better day. Should be, in theory! :)
We made it over to for the bone marrow. What with the holes in my neck, sedation was easy. I didn't feel a thing. I woke up and was pretty groggy -- but after about 45 minutes in recovery they decided I was okay to go over to the infusion center. Our schedule arrival time there was 11AM but we were there at 2:10! So I called the psychiatrist I'm scheduled to meet with at 2:30 for 4PM (knowing that would probably be a pipe dream). We figured I was out of the woods for nausea so we took 10 4mg tablets of dexamethasone. I feel neither irresponsibly rage-filled nor physically impressive. Phhhfft. Another mass media hype-job!
By the time they called us back, I needed a liter of something to combat my uric acid (now 11.3) and to bring down calclium (that was by a nasty subsutaneous injection). The good news is they thing the heightened kidney activity is a side effect of cancer cells rupturing and dumping calcium and uric acid in the blood stream. The Kidney's need help with that.
I also got another Velcade push, a shot in the belly (this one didn't hurt as much) for reducing risk of blood clots, and the final glory, being hooked up to the Platinum, Adriacycin, Cytoxin and Etoposide. Poison running through my veins, as Alice Cooper once sang.
I needed a bit more antinausea to combat all this so we've added a new pill, Ragazan or Ranmanazz or Rasputin -- can't remember which. Anyhow I'm support to take two pills per dose, four doses per day. And then cap it off with Thalidomide before I go to bed.
Hopefully tomorrow will be a better day. Should be, in theory! :)
The lost Tuesday...
Yesterday was a blur. I went to the clinic to get something prescribed for my back, to pick up the thalidomide and tamiflu prescriptions, to get something strong for antinausea, and to have labs drawn. Then we went home around 2PM and I crashed. Woke up at 8PM, did Monday's blog entry, tried to watch a bit of TV and gave up around 10PM, went back to bed.
Up at 7AM today, pain in the back has spread and it remains very difficult for me to stay focused, type a sentence without fumbling over words, etc. Hopefully these are lingering side effects of something I don't need any more of...dunno.
I *do* know that today, I have another bone marrow pull, a small one, and they've already got a hole in my neck to sedate me. Hopefully it will go very, very smoothly with no barfing. I also hope that the oxycontin I'm taking actually works because my back is killing me. Then I'll go to the infusion center for more daily labs.
Hopefully, I won't be wiped out and can write more later.
Up at 7AM today, pain in the back has spread and it remains very difficult for me to stay focused, type a sentence without fumbling over words, etc. Hopefully these are lingering side effects of something I don't need any more of...dunno.
I *do* know that today, I have another bone marrow pull, a small one, and they've already got a hole in my neck to sedate me. Hopefully it will go very, very smoothly with no barfing. I also hope that the oxycontin I'm taking actually works because my back is killing me. Then I'll go to the infusion center for more daily labs.
Hopefully, I won't be wiped out and can write more later.
Tuesday, February 24, 2009
Ugh.
I feel awful.
I got to the bottom, yesterday, of why the first bone marrow under versed didn't hurt, but he crazy guy and his RN didn't get the job done. It seems the first bone marrow also included propyfol, which is a strong conscious sedation. The people in interventional radiology either didn't read the full notes from the same procedure, or weren't allowed to administer it. Either way, now I know what happened.
We checked in a the myeloma clinic to ask a dozen questions that weren't answered before and to get my mandatory pre-op counseling. In this session, a hefty doktor from former union of soviet socialist republics asked me a few questions. After a few minutes, this man who had only one vovel anywhere in his name decided I need to go on an anti-depressant as this procedure is psychologically and emotionally damaging. I hold him both BB and the mandatory psychology visit indicated that I was not depressed at all and didn't need it. He said "you should take it. I take it." I look at this guy and wonder if growing up in Chernobyl was as depressing as it sounds. Finally, he mentioned that this particular type of anti-depressant also works against neuropathy. That raised an eyebrow, so we filled the prescription just in case I start tingling!
After a lot of self-advocacy (which could be read as "whining" or "complaining") I pushed them into scheduling the two procedures (bone marrow transplant and central line placement) under concious sedation, back-to-back. They pulled this off and I woke up in recovery with a bandage on my butt and three large IVs hanging out of my jugular vein!
I felt fine in recovery, but I was verrry groggy. Groggier than I have been before on Versed. But it did it's trick. No pain, no recollection of anything, kudos. The recovery nurse pushed some water and graham crackers on me. Ten minutes later I was barfing into a plastic bag. Ugh.
Then we went to the infusion center, where I had blood drawn through one of the lovely new neck IVs, and where I had my test dose of Melphalan infused. We left.
I was too exhausted to do anything other than throw up two more times and go to sleep -- this was about 5PM. At 1:30 I got up and my back hurt just as much as before. I took an Oxycontin. I woke up at 9AM and I feel nauseous and in pain; I took another Oxycontin. Dr. Yuri Andropov was supposed to prescribe some strong antinausea meds but they haven't really done so yet -- that's one thing we will demand today.
We have a 10AM at the infusion center...I hope I leave there feeling better than I do right now. This sucks.
I got to the bottom, yesterday, of why the first bone marrow under versed didn't hurt, but he crazy guy and his RN didn't get the job done. It seems the first bone marrow also included propyfol, which is a strong conscious sedation. The people in interventional radiology either didn't read the full notes from the same procedure, or weren't allowed to administer it. Either way, now I know what happened.
We checked in a the myeloma clinic to ask a dozen questions that weren't answered before and to get my mandatory pre-op counseling. In this session, a hefty doktor from former union of soviet socialist republics asked me a few questions. After a few minutes, this man who had only one vovel anywhere in his name decided I need to go on an anti-depressant as this procedure is psychologically and emotionally damaging. I hold him both BB and the mandatory psychology visit indicated that I was not depressed at all and didn't need it. He said "you should take it. I take it." I look at this guy and wonder if growing up in Chernobyl was as depressing as it sounds. Finally, he mentioned that this particular type of anti-depressant also works against neuropathy. That raised an eyebrow, so we filled the prescription just in case I start tingling!
After a lot of self-advocacy (which could be read as "whining" or "complaining") I pushed them into scheduling the two procedures (bone marrow transplant and central line placement) under concious sedation, back-to-back. They pulled this off and I woke up in recovery with a bandage on my butt and three large IVs hanging out of my jugular vein!
I felt fine in recovery, but I was verrry groggy. Groggier than I have been before on Versed. But it did it's trick. No pain, no recollection of anything, kudos. The recovery nurse pushed some water and graham crackers on me. Ten minutes later I was barfing into a plastic bag. Ugh.
Then we went to the infusion center, where I had blood drawn through one of the lovely new neck IVs, and where I had my test dose of Melphalan infused. We left.
I was too exhausted to do anything other than throw up two more times and go to sleep -- this was about 5PM. At 1:30 I got up and my back hurt just as much as before. I took an Oxycontin. I woke up at 9AM and I feel nauseous and in pain; I took another Oxycontin. Dr. Yuri Andropov was supposed to prescribe some strong antinausea meds but they haven't really done so yet -- that's one thing we will demand today.
We have a 10AM at the infusion center...I hope I leave there feeling better than I do right now. This sucks.
Sunday, February 22, 2009
Slow day...
I had difficulty sleeping last night because of back pain. Got up this morning and had to take some advil. It was a little better, but it still had a twinge. Jill ran to the store and the second she left, the fire alarm in the building went off. I tried to put my shoes on and tweaked the back...I had that same sick warm feeling that I had when golfing...like I'd broken something. Then I had to walk down 11 flights of stairs, which was a bit of an exercise. False alarm. Somebody's possum casserole started smoking, evidently.
It hasn't gone away -- I thought it might be a side effect of Velcade but that's extremely rare. It's probably the Myeloma. It's a very good thing I am here...I was almost totally incapacitated today. Ugh.
Tomorrow...the bone marrow and the surgical installation of the central venous catheter. Then a test dose of Melphalan, and we pick up the Thalidomide. Ugh.
Nitey nite, folks.
It hasn't gone away -- I thought it might be a side effect of Velcade but that's extremely rare. It's probably the Myeloma. It's a very good thing I am here...I was almost totally incapacitated today. Ugh.
Tomorrow...the bone marrow and the surgical installation of the central venous catheter. Then a test dose of Melphalan, and we pick up the Thalidomide. Ugh.
Nitey nite, folks.
Saturday, February 21, 2009
First trip to the infusion center...
I went over there for what I thought would be a quick injection of Velcade at 11AM.
We left around 2:30PM.
The waiting wasn't that bad, as I'd been anticipating it. Despite working for Disney I've never seen an episode of lost. So I've been conserving the DVDs I've gotten -- four years worth of shows. I watched the full pilot and another episode before I got called in.
That was when the fun began. They didn't have my orders ready, but they did tell me that they needed to draw more blood. "Why?" I asked. "I haven't been given any medication and you ran blood panels two days ago."
Turns out they aren't so good with answering "why" to my satisfaction. Oh well.
The real issue is that it turns out Velcade isn't a shot. It's an intravenous push. The woman tried THREE TIMES to find a vein. By which I mean she pushed in and moved it around and it hurt a lot when she removed it. Then she moved to the other arm, finally found one, and took six vials of blood before the IV push of Velcade. I am supposed to have this done every week for the next three and a half years. I may go insane if they can't find another mode of delivery.
Anyhow, so far, I feel no different, other than both arms are sore and I haven't coughed since I took all those pills! :)
Night falls on Little Rock...tomorrow looks like a day off (I'm sure they want more blood but nobody wrote any orders down for me, so they can go pound sand...they'll be getting blood on Monday anyway).
We left around 2:30PM.
The waiting wasn't that bad, as I'd been anticipating it. Despite working for Disney I've never seen an episode of lost. So I've been conserving the DVDs I've gotten -- four years worth of shows. I watched the full pilot and another episode before I got called in.
That was when the fun began. They didn't have my orders ready, but they did tell me that they needed to draw more blood. "Why?" I asked. "I haven't been given any medication and you ran blood panels two days ago."
Turns out they aren't so good with answering "why" to my satisfaction. Oh well.
The real issue is that it turns out Velcade isn't a shot. It's an intravenous push. The woman tried THREE TIMES to find a vein. By which I mean she pushed in and moved it around and it hurt a lot when she removed it. Then she moved to the other arm, finally found one, and took six vials of blood before the IV push of Velcade. I am supposed to have this done every week for the next three and a half years. I may go insane if they can't find another mode of delivery.
Anyhow, so far, I feel no different, other than both arms are sore and I haven't coughed since I took all those pills! :)
Night falls on Little Rock...tomorrow looks like a day off (I'm sure they want more blood but nobody wrote any orders down for me, so they can go pound sand...they'll be getting blood on Monday anyway).
Chemical breakfast...
About to head over for the Velcade after finishing my first breakfast in anticipation of treatment.
Courses:
1. One bowl raisin bran with skim milk
2. One water
3. One 200mg tablet of Fluconazole (not an Italian dessert, but anti-fungal medication)
4. One 500mg horsepill of Levofloxacin (antibiotic)
5. One 400mg tablet of Acyclovir (antiviral medication)
6. One 40mg tablet of Pantopazole (again, not an Italian chicken preparation (Pollo Alla Pantopazole) but antinausea)
7. One 75mg tablet of Oseltamivir, aka Tamiflu (flu prevention)
Funny...I had heard that a seven course meal in Arkansas consists of an Armadillo and a six-pack. Turns out it's much more involved in creating an immune system. They'll be taking my real one away starting very soon, so they're building it up while they're killing it off.
I've got a pretty bad cold right now. The meds above should obliterate it in quick order, I think!
Courses:
1. One bowl raisin bran with skim milk
2. One water
3. One 200mg tablet of Fluconazole (not an Italian dessert, but anti-fungal medication)
4. One 500mg horsepill of Levofloxacin (antibiotic)
5. One 400mg tablet of Acyclovir (antiviral medication)
6. One 40mg tablet of Pantopazole (again, not an Italian chicken preparation (Pollo Alla Pantopazole) but antinausea)
7. One 75mg tablet of Oseltamivir, aka Tamiflu (flu prevention)
Funny...I had heard that a seven course meal in Arkansas consists of an Armadillo and a six-pack. Turns out it's much more involved in creating an immune system. They'll be taking my real one away starting very soon, so they're building it up while they're killing it off.
I've got a pretty bad cold right now. The meds above should obliterate it in quick order, I think!
Friday, February 20, 2009
Last notes before the battle...
So today was supposed to be a short day and ended up being long.
Went to the clinic to meet with BB. I figured it would be a 30 minute consult, and then the day would be free. That's what it said on the schedule.
We showed up at 10AM and left at 5PM.
Some notables:
1. I have been randomized into the "lite" protocol. I was advised that there is "nothing lite about it" but it should have lower toxicity and fewer side-effects than the "standard" protocol -- and it means six fewer weeks in Arkansas. This is all good and fine...provided the efficacy is the same. BB assures me he is certain that it is. And if it isn't working, he will take me off protocol and nuke me good.
2. Tomorrow, I get a test dose of Velcade by injection. This will be the first slap to the face of my cancer. On Monday, they will do a bone marrow biopsy and a gene array to determine how the Velcade works on the cancer. If it works very well, or poorly, BB will adjust the therapy accordingly. Also on Monday, they will surgically install a central venous catheter in between my clavicle and sub-clavicle. Which means I will have an IV in place for several weeks, sticking out of my neck. Sounds awesome!! But it does mean they'll do all their blood draws, chemo pushes, etc. through this port. Monday afternoon, I will get a test dose of Melphalan, and then another bone marrow biopsy on Wednesday to see how the cancer responds to the Melphalan. Again, they'll have the ability to tweak the treatment based on that data.
3. On Wednesday afternoon, full induction begins -- velcade by IV push, thalidomide in capsule form, dexamethasone in table form, and then the four chemo elements in induction (Platinum, Adriamycin, Cytoxin/Cyclophosphomide, Etopside). Collectively, VTD-PACE. This phase will last a total of eleven days, during which I'll be given two kinds of shots in the belly twice per day each to boost blood counts and fight clotting. When the blood counts return, they will swap out the venous catheter for an even bigger one, and give me shots to stimulate stem cell mobilization. They'll harvest my stem cells through the big gauge catheter, and then the transplant begins.
4. The "lite" protocol transplant consists of 4 days of high-dose chemo, but lower than the standard regimen. Standard is 200 mg/m2 of Melphalan over 24 hours; lite is 50 mg/m2 per day for four days, while continuing VTD for their believed synergistic effect. After this, I'll be given some of my stem cells back, and they'll shoot me up with meds to help my counts return. When my counts return, they'll remove the central line, and I'll take a break of around 3 weeks -- this will be my chance to go home and see the kids. I'll continue taking thalidomide and dex during this break, daily. I may or may not need daily belly injections for the clotting issue.
5. When I come back, I'll do another transplant, followed by some thalidomide and dex daily for a week or so, followed by one cycle of consolidation therapy which will be the same as the induction therapy.
6. Then I'll return to LA, with quarterly visits back in Arkansas, and I'll spend THREE YEARS on maintenance therapy consisting of oral thalidomide and dex, with weekly visits to a doctor's office for injections of Velcade.
It has been hell fighting the insurance company, and also fighting to make sure I can be sedated for all the painful procedures here. There's no clinical need for me to be alert and feeling everything in a bone marrow pull, a needle aspiration of a tumor, or the central line placement -- ALL OF THESE are done under GENERAL anesthesia at City of Hope, and at other centers from Dana Farber to Mayo Clinic they are done under conscious sedation, which is what I'm demanding. Yet I'm made to feel like I'm weak for doing so. Well, frankly, screw anybody that doesn't think I need it. There's no point in having pain for no reason, least of all because they don't want to be bothered with scheduling an anesthesiologist.
Well...it's been a long, strange trip, as a band I'm not fond of once sang. Tomorrow at 11AM Arkansas time, the fight begins in earnest. I'll post on that, as well as the wealth of meds (9 types so far that I'll take in pill form daily, plus another three given through IV, PLUS all the chemo) that I'm on and their side effects -- sobering. But I'm ready.
Thanks again, all, for your support.
Went to the clinic to meet with BB. I figured it would be a 30 minute consult, and then the day would be free. That's what it said on the schedule.
We showed up at 10AM and left at 5PM.
Some notables:
1. I have been randomized into the "lite" protocol. I was advised that there is "nothing lite about it" but it should have lower toxicity and fewer side-effects than the "standard" protocol -- and it means six fewer weeks in Arkansas. This is all good and fine...provided the efficacy is the same. BB assures me he is certain that it is. And if it isn't working, he will take me off protocol and nuke me good.
2. Tomorrow, I get a test dose of Velcade by injection. This will be the first slap to the face of my cancer. On Monday, they will do a bone marrow biopsy and a gene array to determine how the Velcade works on the cancer. If it works very well, or poorly, BB will adjust the therapy accordingly. Also on Monday, they will surgically install a central venous catheter in between my clavicle and sub-clavicle. Which means I will have an IV in place for several weeks, sticking out of my neck. Sounds awesome!! But it does mean they'll do all their blood draws, chemo pushes, etc. through this port. Monday afternoon, I will get a test dose of Melphalan, and then another bone marrow biopsy on Wednesday to see how the cancer responds to the Melphalan. Again, they'll have the ability to tweak the treatment based on that data.
3. On Wednesday afternoon, full induction begins -- velcade by IV push, thalidomide in capsule form, dexamethasone in table form, and then the four chemo elements in induction (Platinum, Adriamycin, Cytoxin/Cyclophosphomide, Etopside). Collectively, VTD-PACE. This phase will last a total of eleven days, during which I'll be given two kinds of shots in the belly twice per day each to boost blood counts and fight clotting. When the blood counts return, they will swap out the venous catheter for an even bigger one, and give me shots to stimulate stem cell mobilization. They'll harvest my stem cells through the big gauge catheter, and then the transplant begins.
4. The "lite" protocol transplant consists of 4 days of high-dose chemo, but lower than the standard regimen. Standard is 200 mg/m2 of Melphalan over 24 hours; lite is 50 mg/m2 per day for four days, while continuing VTD for their believed synergistic effect. After this, I'll be given some of my stem cells back, and they'll shoot me up with meds to help my counts return. When my counts return, they'll remove the central line, and I'll take a break of around 3 weeks -- this will be my chance to go home and see the kids. I'll continue taking thalidomide and dex during this break, daily. I may or may not need daily belly injections for the clotting issue.
5. When I come back, I'll do another transplant, followed by some thalidomide and dex daily for a week or so, followed by one cycle of consolidation therapy which will be the same as the induction therapy.
6. Then I'll return to LA, with quarterly visits back in Arkansas, and I'll spend THREE YEARS on maintenance therapy consisting of oral thalidomide and dex, with weekly visits to a doctor's office for injections of Velcade.
It has been hell fighting the insurance company, and also fighting to make sure I can be sedated for all the painful procedures here. There's no clinical need for me to be alert and feeling everything in a bone marrow pull, a needle aspiration of a tumor, or the central line placement -- ALL OF THESE are done under GENERAL anesthesia at City of Hope, and at other centers from Dana Farber to Mayo Clinic they are done under conscious sedation, which is what I'm demanding. Yet I'm made to feel like I'm weak for doing so. Well, frankly, screw anybody that doesn't think I need it. There's no point in having pain for no reason, least of all because they don't want to be bothered with scheduling an anesthesiologist.
Well...it's been a long, strange trip, as a band I'm not fond of once sang. Tomorrow at 11AM Arkansas time, the fight begins in earnest. I'll post on that, as well as the wealth of meds (9 types so far that I'll take in pill form daily, plus another three given through IV, PLUS all the chemo) that I'm on and their side effects -- sobering. But I'm ready.
Thanks again, all, for your support.
Thursday, February 19, 2009
Dateline: Little Rock
This will be a quick (for me, meaning 6 paragraphs or so) update. We are now ensconced in a decent apartment which was until very recently occupied by another patient of BB's who has moved two floors up and one room over to a better apartment. Honestly, it's not too bad -- although the guest bedroom has two beds smaller than cots and no window treatments, so it's blinding sunlight in there at 6AM.
We've bought all the sundries we need, and my guitars and recording equipment are set up, as is the PS3 which means the world of Blu-Ray, DVD and videogames has been unlocked. We had sushi last night (surprising good) and barbeque for lunch today (unsurprisingly, awesome).
My friend Ray kindly drove the M6 all the way from LA to here -- a feat which was exhausting but which he admitted was kind of cool, given how nice the car is. I took him out to a nice steak (there are several sources here) and we watched funny movies until the wee hours. Then he was on his way. This was yesterday, Wednesday. After we dropped him off at the airport I stopped by the clinic to do a blood draw (pretty easy -- only six vials this time) and a circular X-ray of my jaw (rotating camera all around me...I felt like I was being filmed for the Matrix 4).
Today was supposed to be nothing to do, except I fought a lot with CIGNA who doesn't want to pay for lodging here. It's ridiculous and counterproductive -- they won't pay for a $3,500 a month apartment, but they'll pay for 6 months in a $3,500 a DAY neutropenic, air-locked hospital room. I'm going to have to spend a fair amount of energy beating the crap out of them, which is unfortunate because I'd rather spend that beating the crap out of cancer. Also, for the first time, some elements of my employer are cracking in their support. They can override any decision CIGNA makes, because they are the payor. CIGNA just administers. But right now, they aren't on the right team. I would hate for them to have to pay 10X as much...I'm really working on them. My friends at Pinnacle Care and CoPay solutions are pissed off and I don't blame them.
I did work this afternoon for a while, which felt good and natural. It's a tough time in this economy, and tough for Disney (though we are positioned better than most media comapnies). I feel bad that I am not able to be there helping out. But I spoke with my boss, who has been great through all of this, and asked to be put back on a project that I was one before I got sick. I have to imagine I can handle a couple of hours a day.
Tonight, we had dinner with Bonnie, BB and BB's wife. It was a terrific time. We got along wonderfully and I was so happy to spend time with them outside the clinical setting. I have total faith that no matter what I'm put through, it will be for a good purpose. I believe BB will cure me.
Also, in the last 36 hours, I've been contacted by three people from 30-41 who were diagnosed and are at various stages -- one is watching, one is about to start treatment, one is about to finish it -- and I have to say it is a wonder to me that people have connected with this journey. We all have a common bond -- whether it be fighting this disease directly, or fighting it with the aid of our family and friends who themselves are connected. I'm so gratified that people are reading, learning, and hopefully drawing inspiration from this. At the same time, I am so very, very thankful for those of you who are following along. Your presence strengthens me. I have no higher compliment to pay.
Tomorrow, I meet with BB in a non-social setting to get randomized and learn where I am and what's about to happen. Maybe I'm sick (mentally)...but I'm ready to commence the ass-kicking that Cancer has asked for.
Lastly...I owe a few of you phone calls. Thank you for your forbearance -- I'll give you a buzz tomorrow.
Take care, everybody. The guy you are backing is about to open fire on what ails him!
We've bought all the sundries we need, and my guitars and recording equipment are set up, as is the PS3 which means the world of Blu-Ray, DVD and videogames has been unlocked. We had sushi last night (surprising good) and barbeque for lunch today (unsurprisingly, awesome).
My friend Ray kindly drove the M6 all the way from LA to here -- a feat which was exhausting but which he admitted was kind of cool, given how nice the car is. I took him out to a nice steak (there are several sources here) and we watched funny movies until the wee hours. Then he was on his way. This was yesterday, Wednesday. After we dropped him off at the airport I stopped by the clinic to do a blood draw (pretty easy -- only six vials this time) and a circular X-ray of my jaw (rotating camera all around me...I felt like I was being filmed for the Matrix 4).
Today was supposed to be nothing to do, except I fought a lot with CIGNA who doesn't want to pay for lodging here. It's ridiculous and counterproductive -- they won't pay for a $3,500 a month apartment, but they'll pay for 6 months in a $3,500 a DAY neutropenic, air-locked hospital room. I'm going to have to spend a fair amount of energy beating the crap out of them, which is unfortunate because I'd rather spend that beating the crap out of cancer. Also, for the first time, some elements of my employer are cracking in their support. They can override any decision CIGNA makes, because they are the payor. CIGNA just administers. But right now, they aren't on the right team. I would hate for them to have to pay 10X as much...I'm really working on them. My friends at Pinnacle Care and CoPay solutions are pissed off and I don't blame them.
I did work this afternoon for a while, which felt good and natural. It's a tough time in this economy, and tough for Disney (though we are positioned better than most media comapnies). I feel bad that I am not able to be there helping out. But I spoke with my boss, who has been great through all of this, and asked to be put back on a project that I was one before I got sick. I have to imagine I can handle a couple of hours a day.
Tonight, we had dinner with Bonnie, BB and BB's wife. It was a terrific time. We got along wonderfully and I was so happy to spend time with them outside the clinical setting. I have total faith that no matter what I'm put through, it will be for a good purpose. I believe BB will cure me.
Also, in the last 36 hours, I've been contacted by three people from 30-41 who were diagnosed and are at various stages -- one is watching, one is about to start treatment, one is about to finish it -- and I have to say it is a wonder to me that people have connected with this journey. We all have a common bond -- whether it be fighting this disease directly, or fighting it with the aid of our family and friends who themselves are connected. I'm so gratified that people are reading, learning, and hopefully drawing inspiration from this. At the same time, I am so very, very thankful for those of you who are following along. Your presence strengthens me. I have no higher compliment to pay.
Tomorrow, I meet with BB in a non-social setting to get randomized and learn where I am and what's about to happen. Maybe I'm sick (mentally)...but I'm ready to commence the ass-kicking that Cancer has asked for.
Lastly...I owe a few of you phone calls. Thank you for your forbearance -- I'll give you a buzz tomorrow.
Take care, everybody. The guy you are backing is about to open fire on what ails him!
Monday, February 16, 2009
Good Night Saigon...
It's very hard to go to bed, knowing this will be the last night at home for three months...knowing that tomorrow morning I say good bye to my kids for what will seem an interminable amount of time to them, and to me. Parker is bad enough, but she'll be mostly the same when I come back to see her in three months. My little son, though, is only 17 months. And he'll be very different...maybe starting to speak in full sentences. I've set up videoconferencing so I can see them each night...but arms can't reach through a monitor for a hug. My heart breaks with all the things I'm going to miss because of this bullshit disease.
The bags are packed...Ray is with the car in Amarillo tonight and will make it out the rest of the way tomorrow, getting to Little Rock just after we've arrived, checked into the apartment, and gotten the lay of the land. My hair is cut shorter than it's ever been. Parker even said "you don't look anything like daddy."
Wow.
I know I won't sleep a wink. But still I have to try.
The bags are packed...Ray is with the car in Amarillo tonight and will make it out the rest of the way tomorrow, getting to Little Rock just after we've arrived, checked into the apartment, and gotten the lay of the land. My hair is cut shorter than it's ever been. Parker even said "you don't look anything like daddy."
Wow.
I know I won't sleep a wink. But still I have to try.
More nonsense from CIGNA...
So the good news is I got a phone call saying that the procedures have been approved. This is once again inconsistent as they have also been asking for several more tests (a close-up jaw x-ray, a PSA (prostate) urine and blood test, and something else that escapes me). I've asked my contact at CoPay Solutions to confirm we don't need to bother with this stuff -- why waste time and complicate things if we don't have to?
They haven't yet approved lodging and transportation -- and the funny thing is, when I say "I know your policy is just deny, deny, deny, deny, deny until the person goes away" they never challenge or correct me. They had also said that the denial for my lodging and travel would be sent out about two weeks ago, and I find out today that the letter is dated February 16, so they just plain ol' lie. That's okay. I will take them on and demolish them if need be, just as I am going to demolish cancer.
Lastly, I heard from a Dr. EA at BB's clinic who completely contradicted what CS told me about mouth sores. The "we haven't seen any in two years" has been replaced by "you will probably get them, and we use ice chips to try to minimize their severity."
WHY CAN'T THESE PEOPLE BE CONSISTENT?!?!?!?!?!?!?
Anyhow, tomorrow is the big day. Any moment my hair guy is going to arrive and I will turn into a marine recruit. "With a bit of shape to it," my stylist is quick to point out. We shall see! :)
Tomorrow, then, we board our plane. I did some work with Parker on her George Washington Carver project, and we made waffles this morning. She loves helping daddy make waffles. I relished that. It's going to be a long time until we make them again.
They haven't yet approved lodging and transportation -- and the funny thing is, when I say "I know your policy is just deny, deny, deny, deny, deny until the person goes away" they never challenge or correct me. They had also said that the denial for my lodging and travel would be sent out about two weeks ago, and I find out today that the letter is dated February 16, so they just plain ol' lie. That's okay. I will take them on and demolish them if need be, just as I am going to demolish cancer.
Lastly, I heard from a Dr. EA at BB's clinic who completely contradicted what CS told me about mouth sores. The "we haven't seen any in two years" has been replaced by "you will probably get them, and we use ice chips to try to minimize their severity."
WHY CAN'T THESE PEOPLE BE CONSISTENT?!?!?!?!?!?!?
Anyhow, tomorrow is the big day. Any moment my hair guy is going to arrive and I will turn into a marine recruit. "With a bit of shape to it," my stylist is quick to point out. We shall see! :)
Tomorrow, then, we board our plane. I did some work with Parker on her George Washington Carver project, and we made waffles this morning. She loves helping daddy make waffles. I relished that. It's going to be a long time until we make them again.
Sunday, February 15, 2009
The last weekend as a free man...
...or, if you want to take a more optimistic view of things, the last weekend before I start killing my cancer.
I've eaten very well over the last couple of weeks -- Gary Danko in San Francisco, Michael Mina in San Francisco, and Joël Robuchon in Vegas, one of just a couple of three-star Michelin restaurants in the US. Now, it's crummy food and no wine for a long time. C'est la vie.
Some minor changes to the schedule. Our friend Ray picked up my car yesterday and began the arduous three day drive to Arkansas -- what a great guy, and we are of course very, very thankful.
We'll fly out on Tuesday. We have an apartment -- it's evidently not a very good one but it will do until we can improve the situation. It is in a good building, but the previous tenant is also a patient of BB's -- and he just wrote a harrowing account of a simple central line placement that nearly turned into one of Countess Bathory's rejuvenating spa treatments. Anyhow, the particular apartment we are moving into is evidently not exactly furnished very well. Hmm....did I bring my Blu Ray player for nothing?
Wednesday we'll run around shopping. Thursday I am going in for more blood work, although I have been assured that this is nothing like the 30-vial draw on my first visit. If they want to take half a dozen vials, I can live with it. My bet is they take the 12 or 14 that City of Hope used to do. Not the end of the world, but as I've written elsewhere, I picked the wrong disease for somebody that doesn't like needles.
I presume on Thursday I will also formally sign consent to sign up for Total Therapy 4, which is the study that randomizes between the standard Total Therapy 3 treatment and a "Lite" version that may have reduced toxicity. The core differences, and I apologize if I'm repeating this:
* Lite version has only one cycle of induction, versus two (same drugs though)
* Lite version uses fractionalized Melphalan for the high-dose treatment: 50mg/m2 for four days straight in conjunction with ongoing Velcade, Thalidomide and Dexamethasone, as opposed to 200mg/m2 in one fell swoop in the Standard arm.
* Lite version has only one cycle of consolidation, versus two (again, same drugs).
The lite version is about six weeks shorter than the regular version, which sounds good to me, but I also don't want to go through all this crap only to have it not work. So if I'm in the Lite version and I'm not achieving Complete Remission, I will ask to be taken off Protocol and given another induction cycle, etc. Similarly, if I'm in the Standard arm and achieve Complete Remission after one cycle of induction, I'll ask to be moved to the Transplant phase immediately.
Both Lite and Standard harvest after the first cycle of induction, interestingly enough.
On Friday, we meet with BB, and he'll go over the blood work, etc.
On Saturday, I will get a plain ol' shot in the arm containing 2mg Velcade/m2. By the way, turns out m2 measures total surface area of the body. Seems curious to me -- I would think that body mass in kg or m3 for body volume would be better measures...but this is the standard measure so that's the way we go.
On Monday, they will sedate me and install the port, while at the same time doing the first of many bone marrows. That afternoon, I'll get my first Melphalan application administered through the port (10mg/m2, which seems like a lot depending on how much body surface area I've got -- more than I did a few years ago, that's for sure! But the 200mg or 50mg doses they give during the high-dose chemo are administered over continuous 24hr drip versus this one IV push, so that won't be as daunting as it seems.
On Wednesday, another bone marrow. And then that afternoon, I get plugged into the chemo soda fountain for a few days.
Tomorrow, I'll be getting my head shorn pretty short. And I will help Parker with her school project. The school is observing Black History Month and every student in Parker's class drew a person out of a hat and is supposed to make a poster about that person's life. Parker drew George Washington Carver. I can't wait to help her.
In the meantime, all I can think of is the funniest bit Eddie Murphy ever did on Saturday Night Live, way back in 1984. I wonder if any of this will make it to the poster? :)
I've eaten very well over the last couple of weeks -- Gary Danko in San Francisco, Michael Mina in San Francisco, and Joël Robuchon in Vegas, one of just a couple of three-star Michelin restaurants in the US. Now, it's crummy food and no wine for a long time. C'est la vie.
Some minor changes to the schedule. Our friend Ray picked up my car yesterday and began the arduous three day drive to Arkansas -- what a great guy, and we are of course very, very thankful.
We'll fly out on Tuesday. We have an apartment -- it's evidently not a very good one but it will do until we can improve the situation. It is in a good building, but the previous tenant is also a patient of BB's -- and he just wrote a harrowing account of a simple central line placement that nearly turned into one of Countess Bathory's rejuvenating spa treatments. Anyhow, the particular apartment we are moving into is evidently not exactly furnished very well. Hmm....did I bring my Blu Ray player for nothing?
Wednesday we'll run around shopping. Thursday I am going in for more blood work, although I have been assured that this is nothing like the 30-vial draw on my first visit. If they want to take half a dozen vials, I can live with it. My bet is they take the 12 or 14 that City of Hope used to do. Not the end of the world, but as I've written elsewhere, I picked the wrong disease for somebody that doesn't like needles.
I presume on Thursday I will also formally sign consent to sign up for Total Therapy 4, which is the study that randomizes between the standard Total Therapy 3 treatment and a "Lite" version that may have reduced toxicity. The core differences, and I apologize if I'm repeating this:
* Lite version has only one cycle of induction, versus two (same drugs though)
* Lite version uses fractionalized Melphalan for the high-dose treatment: 50mg/m2 for four days straight in conjunction with ongoing Velcade, Thalidomide and Dexamethasone, as opposed to 200mg/m2 in one fell swoop in the Standard arm.
* Lite version has only one cycle of consolidation, versus two (again, same drugs).
The lite version is about six weeks shorter than the regular version, which sounds good to me, but I also don't want to go through all this crap only to have it not work. So if I'm in the Lite version and I'm not achieving Complete Remission, I will ask to be taken off Protocol and given another induction cycle, etc. Similarly, if I'm in the Standard arm and achieve Complete Remission after one cycle of induction, I'll ask to be moved to the Transplant phase immediately.
Both Lite and Standard harvest after the first cycle of induction, interestingly enough.
On Friday, we meet with BB, and he'll go over the blood work, etc.
On Saturday, I will get a plain ol' shot in the arm containing 2mg Velcade/m2. By the way, turns out m2 measures total surface area of the body. Seems curious to me -- I would think that body mass in kg or m3 for body volume would be better measures...but this is the standard measure so that's the way we go.
On Monday, they will sedate me and install the port, while at the same time doing the first of many bone marrows. That afternoon, I'll get my first Melphalan application administered through the port (10mg/m2, which seems like a lot depending on how much body surface area I've got -- more than I did a few years ago, that's for sure! But the 200mg or 50mg doses they give during the high-dose chemo are administered over continuous 24hr drip versus this one IV push, so that won't be as daunting as it seems.
On Wednesday, another bone marrow. And then that afternoon, I get plugged into the chemo soda fountain for a few days.
Tomorrow, I'll be getting my head shorn pretty short. And I will help Parker with her school project. The school is observing Black History Month and every student in Parker's class drew a person out of a hat and is supposed to make a poster about that person's life. Parker drew George Washington Carver. I can't wait to help her.
In the meantime, all I can think of is the funniest bit Eddie Murphy ever did on Saturday Night Live, way back in 1984. I wonder if any of this will make it to the poster? :)
Hello, my name is Professor Shabazz K. Morton. In 1895, at the Tuskagee Institute in Alabama, a black man named George Washington Carver developed a new method of soil improvement through crop rotation to end the South's African cultural dependence on cotton alone. As a result, Carver came up with hundreds of industrial uses for the peanut. Sure, industrial uses.
Meanwhile, one night, he's having a few friends over to his house for dinner. And one of them leans over and says to Dr. Carver, "Excuse me, George? What's that your putting on your bread?" Carver says, "Oh, that's nothing but a butter substitute that I made from peanuts. I can't digest all that animal fat, you know."
So the other fellow tasted it, and he says, "Hmm.. this tastes pretty good, man. Mind if we take a peek at the recipe?" And Dr. Carver says, "Take a peek? Man, you can have it. Who's gonna eat butter made out of peanuts? No, I'm working on a method to compress peanuts into phonograph needles."
So, Professor Carver's two dinner guests...Edward "Skippy" Williamson and Frederick "Jif" Armstrong - two white men - stole George Washington Carver's recipe for peanut butter, copyrighted it, and reaped untold fortunes from it. While Dr. Carver died penniless and insane, still trying to play a phonograph record with a peanut.
This has been "Black History Minute". I'm Professor Shabazz K. Morton. Good night.
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