Having done this now for several months, I can see that writers walk the line between serving their readers, on one hand, and serving themselves, on the other. So, I asked myself, who is the audience of this modest journal? And concluded that it was, primarily, friends and family who genuinely wanted to know how I was doing. Then, as things developed during the blog, we added some readers who just wanted to learn more about the Stem Cell Transplant process, and my experience of it.
As I write, we are on a plane back to our home in Bethesda. This morning at 5:15, we turned off the lights to our empty Palo Alto apartment and locked the door. The rental car went back yesterday. The last of our apartment furnishings went either to our three daughters (all of whom reside in the Bay Area at this moment), or to patient #4.
This past Friday, #4 and his wife moved into an apartment above us. He has begun his vaccine process and will progress, smoothly no doubt, through his transplant in a couple of months. When April comes, he will thankfully bequeath his accumulated household goods to patient #8, and so on.
My personal expectations, in the near term, are mundane. If I can avoid the related illnesses that are sometimes a consequence of the transplant, the remainder of my experience will consist of a few overnight trips back to Palo Alto:
In February, my final inspection by Dr. Weng (Hopefully final, anyway). In late March, I will be given the sixth and final vaccine treatment. Finally (if I may point out the understated finality of this paragraph), an April follow-up that may, or may not, indicate in a scientifically valid way, any long term prognosis for success of the vaccine. In July, 2011, I will attend the class of 2010 reunion. The return trips this year might provide some interesting news, so I promise to post whatever I learn. After that, my work here is probably done.
Just as most other MCL patients who choose the autologous transplant route, from this point on, we all just watch and wait. And watching and waiting is not the stuff of good blogs. At least, not for any of the readership that I serve.
So thank you all for reading thus far, and for sending your comments and notes of support. If I lacked the energy to respond, I hope you understand how important each was to me during a long and sometimes trying process. If you were seeking information about the SCT process, maybe these posts have been helpful. If there are some other classes of readers (veering a little into self-indulgence now), this is where the fun ends and I return to regular life.
January 31, 2010
Sunday, January 31, 2010
Thursday, January 14, 2010
Full Circle
On January 11th—Day+14— I was pronounced fit to leave the hospital to continue the progression of the transplant at “home.” Home being the rented apartment we occupy across from the Hospital campus. I will reside here until I have passed the risk period of high fever, infection, etc.—from 15 to 45 days, depending on my progress. One more waiting room.
The transplant process was, for me, virtually event-free. Not to say that it was without its attendant drama. But all aspects were managed quite well by the nursing staff at the Hospital. Which leads me to a deserved complement for the nursing staff: The day-to-day stem cell transplant process is managed almost entirely by the specialized nursing staff at Stanford. I am sure that there are economic considerations at work here, but, to my mind, the factors are more psychic. I imagine that that the work of the nurses allows the practicing oncologists to maintain an appropriate clinical distance as their patients suffer greater and more varied doses of toxic chemicals. (Just as a dentist must endure the continuing suffering of cavity filled patients.) So the system is much better for the competent work of the nurses, who buffer patients and doctors during the worst of the process. With quiet determination, they conduct this near-death process, at an age when many of us were still “finding ourselves.” And they do it 24 hours a day. In fact most of the real action in any day seems to be between the hours of 11:00PM and 6:00 AM. The oncologists are able to do what they do best—maintaining a watch from a more clinical perspective. The system moves forward.
And speaking of buffers, this blog has served its purpose well, allowing me a little perspective on the process as I have moved along. I hope that most of the work, and pithy events, are behind me, but will pass along any more that occur. Thank you all for reading this, and for being there.
January 13, 2010
The transplant process was, for me, virtually event-free. Not to say that it was without its attendant drama. But all aspects were managed quite well by the nursing staff at the Hospital. Which leads me to a deserved complement for the nursing staff: The day-to-day stem cell transplant process is managed almost entirely by the specialized nursing staff at Stanford. I am sure that there are economic considerations at work here, but, to my mind, the factors are more psychic. I imagine that that the work of the nurses allows the practicing oncologists to maintain an appropriate clinical distance as their patients suffer greater and more varied doses of toxic chemicals. (Just as a dentist must endure the continuing suffering of cavity filled patients.) So the system is much better for the competent work of the nurses, who buffer patients and doctors during the worst of the process. With quiet determination, they conduct this near-death process, at an age when many of us were still “finding ourselves.” And they do it 24 hours a day. In fact most of the real action in any day seems to be between the hours of 11:00PM and 6:00 AM. The oncologists are able to do what they do best—maintaining a watch from a more clinical perspective. The system moves forward.
And speaking of buffers, this blog has served its purpose well, allowing me a little perspective on the process as I have moved along. I hope that most of the work, and pithy events, are behind me, but will pass along any more that occur. Thank you all for reading this, and for being there.
January 13, 2010
Sunday, January 10, 2010
After the Gold Rush
Here we are at Day +11. I fear the text of this event has been a little anti-climactic for many readers. “if it was supposed to be so tough, why did it take only a couple of paragraphs to tell?” Probably others may feel “enough is enough” “got any good ball scores.” Well, to leave the initial transplant behind, I would offer this summary:
The Core of my autologous SCT experience began on Day -6 and ended, from the perspective of discomfort, about Day +9. During that time, doctors, nurses and assistants asked me probably 75 times “do you feel any pain? On a scale of 1- 10, with 1 being the mildest and 10 being the worst imaginable pain.” By the end of this process, I no longer even playfully considered the high end of that scale. Not that I went there all that often. I really didn’t. But there is a psychic cost to asking yourself that question, once you understand that you may call it 8, only because you feel that a 10 must involve some screaming, and you were unable to do that part. I also learned what I began to suspect before I started: That time is your friend, and pain’s enemy. You can endure a great deal of a feeling that begins: “This will only hurt for about 10 seconds”
On the other hand, a span of 15 minutes can be a life time, if it comes at the end of another hour and 1/2. If you are playing on the deep end of the scale, I swear to God the clock WILL NOT MOVE.
Discomfort is what we call the collective of Nausea, Vomiting and Diarrhea (NVD) and terminal fatigue. Again, this was not at all a regular part of my process. But it will happen before engraftment at least once or twice for a day or two.
This is not the time to reconnect with your adolescent body image issues. (1st rule of SCT for Dummies).
Most hair ejects from your body. Various blisters and rashes overtake most available skin. Nails warp or die. And you should see the other guys!! (Actually, I believe most of the other patients in the SCT units were male at the time I was there. And most of them seemed to be having a more complicated process than me. They all took it well.) Imagine a bunch of old, very bald, guys with funny pajamas, sitting in the corridor doing shoulder rolls for our physical therapist. Imagine me in that group.
Probably like me, they had no idea where the necessary resolve would come from (not the place for the style of good form, sorry). But we all had it and leave, I hope, with something to spare for another time.
And if they are like me, they will have no bright line memory of any one event that made this whole thing such a biblical struggle.
January 8, 2010
The Core of my autologous SCT experience began on Day -6 and ended, from the perspective of discomfort, about Day +9. During that time, doctors, nurses and assistants asked me probably 75 times “do you feel any pain? On a scale of 1- 10, with 1 being the mildest and 10 being the worst imaginable pain.” By the end of this process, I no longer even playfully considered the high end of that scale. Not that I went there all that often. I really didn’t. But there is a psychic cost to asking yourself that question, once you understand that you may call it 8, only because you feel that a 10 must involve some screaming, and you were unable to do that part. I also learned what I began to suspect before I started: That time is your friend, and pain’s enemy. You can endure a great deal of a feeling that begins: “This will only hurt for about 10 seconds”
On the other hand, a span of 15 minutes can be a life time, if it comes at the end of another hour and 1/2. If you are playing on the deep end of the scale, I swear to God the clock WILL NOT MOVE.
Discomfort is what we call the collective of Nausea, Vomiting and Diarrhea (NVD) and terminal fatigue. Again, this was not at all a regular part of my process. But it will happen before engraftment at least once or twice for a day or two.
This is not the time to reconnect with your adolescent body image issues. (1st rule of SCT for Dummies).
Most hair ejects from your body. Various blisters and rashes overtake most available skin. Nails warp or die. And you should see the other guys!! (Actually, I believe most of the other patients in the SCT units were male at the time I was there. And most of them seemed to be having a more complicated process than me. They all took it well.) Imagine a bunch of old, very bald, guys with funny pajamas, sitting in the corridor doing shoulder rolls for our physical therapist. Imagine me in that group.
Probably like me, they had no idea where the necessary resolve would come from (not the place for the style of good form, sorry). But we all had it and leave, I hope, with something to spare for another time.
And if they are like me, they will have no bright line memory of any one event that made this whole thing such a biblical struggle.
January 8, 2010
Monday, January 4, 2010
Et Voila!
The much anticipated “guest writer” has decided to make an appearance. Please welcome…Jane.
Where to start? I suppose we can start from today, Day +7. Mike is through the worst part of the transplant, fingers crossed. In typical form, he is riding his in-room stationary bike almost daily. He is fighting an unexpected but nonetheless exciting skin rash—one of the myriad side effects of the 3 toxic chemical infusions he was given two weeks ago. He is extremely tired, but still manages to spend time chatting with us, doing his daily physical therapy routine, etc. As expected, his white blood cell count hovers just above zero and will remain here for the next week or so. With no immune system to speak of, Mike is at great risk for opportunistic infection. When the girls and I visit, we have a strict “germ removal” protocol for entering his room (gown-up, wash hands for 3 minutes, face mask, booties).
14 days ago, Mike received the first of three chemotherapy drugs designed to delete his immune system. Called BCNU, this particularly gnarly drug can only be dissolved in and administered via alcohol and can cause hangover-like effects. “Can I see the cork?” Mike asked as the nurse was loading up the UV-protected glass bottle. He had an acute reaction to this drug (see Christmas Day entry titled, “Back on Your Heads”). Thankfully, the side effects diminished quickly when the infusion finished.
Over the following 5 days, Mike received two more infusions. (It’s a shame “infusion” makes it sound like a spa treatment.) He tolerated these better than the first, but with each one came an additional wave of fatigue and nausea. He walked the mile loop around the BMT floor most days when chemo was not the main act of the day (22 laps = 1 mile). On one such walk, as he lapped another identically dressed BMT patient-walker, he commented, “Nice pants.” He was on a roll that day. After 11 laps, I asked him if he wanted to sit down for a break. “No,” he replied, “I’m on a mission.”
On the 7th day, he was officially “born again”—he received the stem cells the doctors had carefully harvested and stored weeks before. This was Day Zero. The following day, Day +1, he received his own juiced-up T-cells (Patient 1A’s wife calls this the “magic potion”), pre-programmed to hunt down and kill the few remaining cancerous B-cells. (See picture above.) Mike will be laying low while his immune system regenerates, and will hopefully be out of the woods in the next week or two. We’re all sending good vibes to those little busy cells of his.
All of The McGuires wish you and yours a very Happy New Year. We look forward to next Christmas and New Year back in our own hometown!
Wednesday, December 30, 2009
Guest Post from Shannon: Mike's Birthday
On the 29th, the nurses brought Dad the traditional birthday cake, complete with serenade, to celebrate the re-birth of his immune system.
Go cells, go!
Friday, December 25, 2009
Okay Everybody. Coffee Break’s Over. Back on Your Heads.
December 22, I commenced my own, personal, protocol for a Stem Cell Transplant. Tuesday began with an industrial dose of BCNU. Side effects are greatly varied, but generally last only the length of the infusion (about 2 hours). For mine, it began with a growing tightness in my jaws, which spread quickly to teeth, gums, tongue. Within an hour, I was describing an 8 on the one-to-ten pain scale, for the benefit of the attending nurses. Heading for a perfect 10. Finally, on the third or fourth adjustment, the nurses applied enough pain killer to put me under. Everybody went home for the night. When I woke up the next morning, all was well and the BCNU was relegated to the distant past.
Thursday, we begin with VP16. Less drama than the BCNU. Finally on the 26th, a replay of my previous Cytoxan. Transplant on the 28th. Additional vaccine the next day. At that point we are finished for the Year.
If, in the coming days, I am unable to continue this monologue due to more pressing business, my wife Jane, has volunteered to appear as guest writer. Please afford her all of the usual courtesies associated with this lofty post.
12/25/09
Thursday, we begin with VP16. Less drama than the BCNU. Finally on the 26th, a replay of my previous Cytoxan. Transplant on the 28th. Additional vaccine the next day. At that point we are finished for the Year.
If, in the coming days, I am unable to continue this monologue due to more pressing business, my wife Jane, has volunteered to appear as guest writer. Please afford her all of the usual courtesies associated with this lofty post.
12/25/09
Tuesday, December 22, 2009
Holiday Update
It is December 21. Jane and I made it home for the bulk of last week, just in time to experience an epic Washington snow storm. I found myself oddly unprepared for the expressions of support from so many friends and family. But it was hugely important to me, and to Jane as well. Thanks to all of you, for all you have done. I certainly hope that, should the situation present itself, I will respond in kind. And I hope that the situation never does.
A cute story: while clearing up some loose ends at work, I called an attorney about some lingering invoices. ( I have been a little lax in such things recently.) He said he thought it better not to make a collection call at year end because I might be otherwise occupied, and wished me luck. From a professional viewpoint, it is sad that he will have to be unchained from the other ten thousand at the bottom of the sea.
We returned to CA last night. Would have preferred to stay home indefinitely, but this situation demands some closure. Glancing around, I see that there is no one else for the job.
I truly look forward to the time when none of this—chemo-therapy, BMT’s, gory details, and all—is to be found anywhere in our conversations around the table, at the bar, or on the playing field. It will happen. Maybe next Christmas.
Of historical significance, our oldest daughter, Molly, has become engaged since the last post. She and her fiancé, Julien Lamamy, met in grad school several years ago and have continued their relationship over some daunting distances. We are very happy for them. They make a wonderful couple and care for each other deeply. And speaking for both parents, we couldn’t ask for a better husband for Molly.
All three of our daughters, Molly, Shannon, and Joanna, are here for Christmas and New Years. When they aren’t visiting me in the hospital, they, and Jane, should have some good times together over the holidays. Never underestimate the impact on immediate family. Mine is doing a first-rate job of supporting the testy patient.
Today is the winter solstice. One of my favorite times because the days only lengthen from here. Tomorrow I begin the BMT, and will resume the challenge of finding the most humorous, edgy ironies in the events that others only find unpleasant.
Best to all.
12/21/09
A cute story: while clearing up some loose ends at work, I called an attorney about some lingering invoices. ( I have been a little lax in such things recently.) He said he thought it better not to make a collection call at year end because I might be otherwise occupied, and wished me luck. From a professional viewpoint, it is sad that he will have to be unchained from the other ten thousand at the bottom of the sea.
We returned to CA last night. Would have preferred to stay home indefinitely, but this situation demands some closure. Glancing around, I see that there is no one else for the job.
I truly look forward to the time when none of this—chemo-therapy, BMT’s, gory details, and all—is to be found anywhere in our conversations around the table, at the bar, or on the playing field. It will happen. Maybe next Christmas.
Of historical significance, our oldest daughter, Molly, has become engaged since the last post. She and her fiancé, Julien Lamamy, met in grad school several years ago and have continued their relationship over some daunting distances. We are very happy for them. They make a wonderful couple and care for each other deeply. And speaking for both parents, we couldn’t ask for a better husband for Molly.
All three of our daughters, Molly, Shannon, and Joanna, are here for Christmas and New Years. When they aren’t visiting me in the hospital, they, and Jane, should have some good times together over the holidays. Never underestimate the impact on immediate family. Mine is doing a first-rate job of supporting the testy patient.
Today is the winter solstice. One of my favorite times because the days only lengthen from here. Tomorrow I begin the BMT, and will resume the challenge of finding the most humorous, edgy ironies in the events that others only find unpleasant.
Best to all.
12/21/09
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