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

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 fiancĂ©, 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

Saturday, December 12, 2009

Shooting Skeet

In Chapter 5 of Catch 22 (for those interested in research) Yossarisan and Dunbar discuss the merits of shooting skeet on the newly constructed range. Dunbar makes the argument that, while it is boring and unpleasant, the practice makes the time pass very slowly—thereby increasing the length of his life.
My life has lengthened considerably in the past two weeks, by this measure. And would seem to hold much more longevity in the future.
Cytoxan Mobilization , not being a perfect science, still leaves something to be desired in terms of side-effect management. Happily, two weeks later, I am sitting, once again, in apheresis, awaiting collection of sufficient white blood cells to proceed with the next, and final, phase of the transplant.
My hair is leaving town again. And to paraphrase Bruce Springsteen: “they ain’t coming back.” New hair will follow, though, if my experience proves correct.
Both Jane and I are going back to Bethesda for a few days of break. Will return at the end of next weekend, when the real work begins. Transplant chemo begins the 23rd of December. (Followed up on the 25th and 27th). Actual day of transplant is the 28th. The week or so following will be a replay of the week following the Mobilization, but with better special effects. Not sure how much blogging will be available in that time frame, but I will do my best.
Feeling a little Dickensian as we approach the holidays, I wish a “Happy Christmas to all” and the best of holidays to everyone else.
Saturday Morning, December 12

Saturday, November 28, 2009

High Cy

According to Wikipedia: Cyclophosphamide (the generic name for Endoxan, Cytoxan, Neosar, Procytox, Revimmune), also known as cytophosphane, is a nitrogen mustard alkylating agent,[1] from the oxazophorines group.
An alkylating agent adds an alkyl group (CnH2n+1) to DNA. It attaches the alkyl group to the guanine base of DNA, at the number 7 nitrogen atom of the imidozole ring.
It is used to treat various types of cancer and some autoimmune disorders. It is a "prodrug"; it is converted in the liver to active forms that have chemotherapeutic activity.


Got up early today and hit the rowing machine for a quick 4,000 meters. Pretty lame distance, but a good idea after last night’s spectacular turkey fest at our friends, the Luikarts, in San Francisco. Off to the hospital by 10:30. And waited...
This phase is called “Cytoxan mobilization.” As we were setting up, I asked the nurse what was in store for the day, as I have already had regular Cytoxan doses as a part of my R-CHOP. After she runs the numbers, she tells me that I will be receiving about 10 times the R-CHOP dose. “It’s really a different drug at these doses.”
Great.
At 4:30, the session begins with Harry Nilson’s Jump Into The Fire playing on my ipod. This seems appropriate. Initially, the nurses administer a panoply of anti-nausea meds including Benadryl, Dekadron, Zofran. Benadryl, when administered in industrial strength doses leaves a metallic taste in my mouth. It also makes it difficult to fully form words or type accurately. I persevere, as I am not otherwise occupied.
Now that I’m suitably armed, the Cytoxan begins to flow like water.
This will continue for another 90 minutes. There may be drama, or not. To keep me occupied during my overnight stay, they have administered a drug to stimulate VERY frequent urination. It works as advertised. I am on the 30 minute sitcom schedule. This will protect my bladder from burning that the Cytoxan can cause, if it stays too long.
My venue is now more private. I am in a hospital room in the E-1 wing of the main hospital at Stanford. This is a somewhat specialized area—the transplant unit—where all in-patient transplants are performed. Super sterile conditions. Everyone wears a mask. While it can be of some interest for an overnight, this is where I will come for the transplant and spend three weeks. Probably longer than I will want to stay. The food is fine, but no wine is served with meals—or in between for that matter.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
It’s the next morning and things are fine. No particular drama, although the hospital is not the place for a good night’s sleep. The nursing staff, as usual, is excellent. Now I go home for a week or so of self-administered neupogen injections, to stimulate stem cell production in my blood stream. A note for those who are debating national health care this month: Jane went to the drug store to order the neupogen, and was presented with a tab for $12,000 for a ten-day supply. Not a problem for our BC/BS policy. Less likely so for others.

Once the mobilization and stem cell harvest are complete—hopefully by the 12th of December-we are free to go, and hope to get back to Bethesda for a week to feed the dog and let him out.
11/28/09

Monday, November 23, 2009

Goosebumps

Stanford was the last stop on our “tour” of medical institutions in March and April of this year. Almost uniformly, to that point, the reception from the hospitals was similar and terminator-like. We were interviewed by the lead research doc, complete with attending residents, a nurse or two, etc. Each explained the risks of the disease, the need for treatment either yesterday, tomorrow, or, if they were mellow, maybe in a month or so. With the exception of Dr. Windham Wilson at NIH, the message was a variation on the theme: “come with me if you want to live.”

Our final stop, at the insistence of our daughter, Molly, was The Farm, to check out their nascent vaccine program for MCL. We met with the aforementioned, bright and engaging Dr. Josh Brody who gave us his detailed description of their vaccine and its previous successes. After answering our questions, he introduced us to Dr. Wan Kai Weng, who would oversee the stem cell transplant part of the process. Wan Kai is a spare young man, usually dressed in khaki pants and short sleeved, button-down oxfords. He began his medical training in immunology, became interested in the treatment of cancer, and moved to the BMT department of Stanford. He is exceedingly bright, soft spoken, and has a priceless bedside manner. (When I made the off-handed comment that my several bone marrow biopsies were non-events, he put his hand on my shoulder and said with an earnest twinkle: “then we are just the hospital for you”)
Wan Kai spent two hours with us that day. He described in detail the operation of the Lymphatic system. How it worked and what went wrong when it broke down and Lymphoma developed. He made the whole description interesting, never condescending, and available to the guy who never took high school biology.
Wan Kai sealed the deal for us. Couldn’t imagine going through this elsewhere.

Flash forward to 2:00 PM, Friday, Nov. 20. We are sitting in Dr. Weng's examining room. I have completed the vaccine portion of this trip, having spent 8 hours on the Apheresis machine one floor above. (You might recall from your Greek that the word Apheresis means “total body enema.”) They have collected sufficient white cells to make the next, more muscular, version of my vaccine.

This is the hand-off from Dr. Brody in "Vaccine" to Dr Weng in "BMT." Wan Kai examines me. Looks at my many test results. Asks how I feel. He describes, again, the coming events. As we finish, he looks over his glasses at me and says, with quiet conviction: “You know, you are about to make history.”
11/23/09

Wednesday, November 18, 2009

Rituxan/ Apheresis as Entertainment

OK. Not really. The final task of the Vaccine team is to perform a “clean up” of blood cells using the mono-clonal antibody Rituxan, then follow up the next day with a significant herding of the cleaned-up cells in the Apheresis machine.
At this point, getting a liter or so of Rituxan shouldn’t be a big deal—as it was a regular part of earlier chemotherapy. I could even sit and write my blog posting while getting it… So you can imagine while reading this that you are connected to an IV, listening to vaguely soothing new-agey kind of music, getting a little fuzzy-headed, and diligently patrolling the frontiers of your mind to check for intruders.
This particular infusion room is pretty busy. It is more formally run than the center in Bethesda where I received the earlier chemo. For one thing, the nurses all don spatter gowns when administering the drugs. This can be disconcerting. Most of the people seem “old” but I am certain that I look different. On the other hand, you really hate to see someone who is much younger in here. For obvious reasons.
The elderly gent across the room is wearing shorts and a short sleeved shirt. Because the temperature is no more than 65, he must be a beast.
They are ramping up the dosage rate as I write. In theory, as my tolerance proves itself, they can download faster. If my tolerance has declined a little, we may have some drama, during which time, I will defer logging my impressions. But so far, I would describe it as a mid-party fog. Time to stop drinking, if you have any sense, and you will feel fine tomorrow. Proceed beyond this point at your own risk.
Guess I will have one more beer.
11/18/09

Friday, November 13, 2009

Moving In (and One Important Correction)


To quote Rudyard Kipling, things are “proceeding according to precedent” here in Palo Alto. All three initial vaccine injections are done. No hair has appeared on my palms.
I moved into our new apartment across from the Hospital on Monday, after my last shot of vaccine. Jane arrived later that day. We bolstered the local economy (something which is totally unnecessary, to my eye) by buying all sorts of home and office supplies. The IT guy arrived on time. We went live on Tuesday Afternoon.
By Wednesday, no longer able to defer installation of my new and improved catheter, I spent the morning in outpatient surgery at the Stanford Cancer Center, where the nice surgeon did her work. (Any one desiring more information can Google “Central Venous Catheter” for details.) It will, no doubt come in handy in the coming weeks.
Thursday we worked in the morning and spent the afternoon getting our “truth in lending” session with the BMT people. The nurse informed us of many possible, unpleasant, or life-threatening, side effects. I am convinced none will apply to me, but thanked her for taking the time.
Then another nurse (Stanford seems to have an endless supply of well qualified and competent nurses) gave us a “training session” on the care and feeding of my new catheter.
Pretty worn out by all of this discussion of risks and infection, we retreated at the end of the day to a small, but excellent, wine bar in town, where I introduced Jane to a glass of “Zendagio,” a great Dry Creek blend that you can only seem to find around here.
Coming soon: When my blood tests indicate sufficient reaction to the vaccine, I will have a brief chemo session (actually Rituxan is an MAB, not technically chemotherapy) then spend a day or two back in the Aph. Center where they will collect all of those primed T-cells for future use. This could begin as early as Sunday or as late as 10 days after. In any event, we get Thanksgiving week off, as all of the girls and friends will be in town then. The Monday after Thanksgiving is set to begin the BMT process with a healthy dose of chemo, followed by a “harvest” of my stem cells for use in the transplant. It takes about two- three weeks to complete that part. Then, on or about the 22nd of Dec., I will check in to the hospital and begin the heavy lifting.
A Retraction, of sorts: During the waiting period before I began this process, the other initial vaccine candidate, who is a local resident, slipped in front on the schedule. He is now ahead of me by a week or two and is on course to be the first one through the trial. I have a little regret about this, but there is some comfort in having an older brother go through things before me. (actually, we are almost the same age)
And so, until further notice, our address will be: 1736 Oak Creek Drive, Apt # 207
Palo Alto, CA 94304
11/13/09

Monday, November 2, 2009

Ready Or Not

During the week of October 20th the good folks at Stanford gave me the signal that they were ready to start. Finished a host of pre-induction tests and left town on Wednesday night, October 28th.
Bright and early on the 29th, I appeared at the Apheresis center for some initial white cell collection. The Aph. center is a large room in the Cancer Center with maybe a dozen reclining "lazy-boys" around the perimeter. Behind each is a machine the size of a steamship trunk, with names like "Count Suckula," "the Leech,"and "Blood Sucker." Inside each is a spinning drum. It collects my blood and separates the blood cells, dividing red, white and plasma. White cells are the heaviest, they go to the outer perimeter, Voila!
My daughter, Joanna attended. Our nurse was a pro. We were finished by 11:00 or so.
Interviewed Erin Hillier, my assigned Social Worker at the Hospital, had lunch, drove to SF to meet Molly for Dinner, dropped off Jo, took Molly back with me to PA. Ready for Day 2.

Showed up at 8:00 for the pre-vaccine exam. I passed. So they gave me three separate pre-vaccinations: Pneumonia, Tetanus, Diphtheria (I recall). then off to the adjacent building for The Vaccine.
I am led into a largish exam room or a small operating theater--I am not too careful to note the details. Both Dr. Josh Brody, and Dr. Wan Kai Weng (head of the BMT dept.) are there. I am asked to lie down on the table (just for a vaccine injection??) and they proceed to describe the science of the day's events, the reason for the other vaccinations, etc. While one is speaking, two nurses, dressed in full length coveralls, with caps, and masks, wheel in a gurney with two large boxes--one is steaming with dry ice. The nurses look very serious and do not speak. On the gurney are my vaccine and a colossally expensive drug to augment its effects. I am told it was delivered via a tunnel under the hospital.
As one of the docs continues the science lecture, the other disappears behind my field of vision and hunches over the cart. The two nurses are very attentive.
Josh jokes that they will be loading the entire contents of one box into me today. He laughs. The room spins a bit. I laugh. The drama builds while Josh loads a tiny syringe with a total of 5cc's of fluid. He pinches some skin around my groin. Never felt a thing.
End of the session. The nurses watch me for an hour to make sure I don't misbehave. I am good.
We hang at the hospital for a while then go to lunch where I down two glasses of wine to celebrate the day.
Mike (10/30/09)

Tuesday, October 13, 2009

In the Waiting Room

My final session of chemotherapy (known as R-CHOP) was completed at 1:00 PM on August 17th. The event passed without any fanfare--mostly because none of us knew it would be the last. So there were no good-byes to the staff, no gifts, pictures, etc. Here is what my last "Breakfast of Champions" looked like:


Despite any rumblings that may occur in your, or my, stomach at the sight of these, this is not your father's chemotherapy. I must give kudos to the infusion staff and to Dr. Vinnie Juneja for minimizing much of the potential discomfort of this experience. In many respects, I was able to continue with the regular aspects of my life.

Meanwhile, also on August 17 (give or take a few days), 3,000 miles away, Dr. Josh Brody and the MCL research team at Stanford received approval from the FDA to commence a Phase I study to apply a previously developed vaccine to the treatment of Mantel Cell Lymphoma. In anticipation of all of this, back in April, we spent a day in Palo Alto visiting the hospital and leaving enough blood to construct my own version of the vaccine. The vaccine was made and resides in a freezer somewhere in the vicinity.

So the next chapter in all of this will include administration of that vaccine with a contemporaneous "reconditioning" of my immune system, also known as an Autologous Stem Cell Transplant or SCT. (Used to be called a bone marrow transplant, but technology has overtaken that aspect. It is no longer necessary to invade my skeleton for marrow. Stem cells are, instead, extracted pretty simply from my blood in a process called Apheresis.) The SCT will remove most traces of my lymphoma and place my immune system on a new and rejuvenated footing. The vaccine, which is administered before, during, and after, the transplant will teach my new T cells to recognize and destroy any newly forming MCL cells.

The Vaccine/ SCT process will begin sometime between October 30 and November 24, as soon as the "T Cell" component of my blood returns to pre-chemo levels, to allow the vaccine the greatest opportunity for success. It will take the better part of three months. I will spend most of this time in Palo Alto.

For the fraction of the population that finds such things interesting or have asked for progress reports, I will try to post regular updates of my adventures as a research vehicle. As a warning: inappropriate humor may appear from time to time, as well as a few "bad" words if they describe my condition best. Thankfully, due to a predictably diminished libido, there will be no sexually explicit content!

In the mean time, while we wait, I am learning my way around the blogging machine, working as much as the economy permits, and enjoying the waning days of the golf season. Jane and I are honing our compartmentalization skills and imagining trips to far-away places in a simpler time. The Girls (Molly, Shannon, Joanna) continue to handle things well. Max, the dog, sleeps.

Although I enjoy this process of writing, I don't have any really good words to describe the wonderful support expressed by so many people along the way, and what it has meant to me and my family.

Mike (10/13/09)