Part III: Transplant

Chapter 11: Schrödinger’s Cat

Dear Medical Profession,

I’m not sure if you are familiar with the famous physics thought experiment of Schrödinger’s Cat. You see in quantum physics the very act of observing a particle, fixes a particle. Until that observation, the exact speed and location of said particle is only a statistical probability. To illustrate how unusual this would be when applied to everyday life, Erwin Schrödinger thought about putting a cat in a box with a vial of poison. The vial is set up in such a way that there is a 50% chance of it shattering and killing the cat, and an equal chance of the vial remaining intact, and the cat surviving. According to the theory he was critiquing, Schrödinger’s cat would be simultaneously dead and alive. Schrödinger was Austrian, by the way, and clearly had an odd sense of humor (or a deep problem with cats)

Why the physics lesson you ask? I was reminded of this story when you were telling me about my biopsy results today. You know, where one reading showed me clear of cancer, and one showed the cancer was still present? You see the connection? The differences here being of course: 1. I am not a cat, and 2. this is not in fact quantum physics. Unless of course, it is. Quantum physics that is.

Perhaps I have been secretly enrolled in a new advanced quantum medical experiment. This could be very cool. I don’t pretend to be a physicist, and so can’t fathom how looking at quarks and string theory might be applied to my treatment. I can only hope it involves hanging out in the particle accelerator, lounging with European lab assistants, a guest spot on the Big Bang Theory, and eventually collapsing into a black hole. I might, however, work on the consent agreement phrasing if I were you. As someone waiting for a cancer diagnosis isn’t naturally inclined to look favorably upon a shrug of the shoulders and a “call back tomorrow” answer.

Of course, I have completely overlooked the possibility that you did indeed think me a cat. In which case, with 8 lives lined up in reserve, the diagnosis of recurrent cancer also becomes less stressful. I can assure you that I am not a cat. I do not, for example, like saucers of milk as I am lactose intolerant. While I may sometimes put on an uncaring aura of disinterest in the people around me, this comes much more from a lack of social skills than from an ability to lick myself in odd places (I tried – no luck).

There is always the last option: you know that I am neither a cat nor part of a new quantum state of health. If this is in fact the case, I might suggest a quick resolution of my biopsy results. I know this can take time, and the word “science” in “medical science” is more goal than reality. Still, it would be a great help and load off of my mind to know that I am in fact not going to die…yet. We’re all going to die of course, I was just hoping my death would involve an amazing act of heroism, a quick resolution, a nice dose of surprise, and a large vat of chocolate mousse.

Since we’re on the subject of medical terminology and informing patients, might I make some more suggestions such as replacing the phrase “dropping a lung” as the description of deflating a lung during surgery, with the more illustrative “sitting an overweight elephant on your chest for a day or two.” Also, the phrase “a small air bubble in your chest” is infinitely preferable to “air embolism,” or “partially collapsed lung.” Also, answering the question “Is my diaphragm paralyzed?” with the question “Can you breathe?” may not be as comforting as intended…seeing as the obvious response is: “FOR NOW I CAN!”

So in closing, let me again congratulate you on the whole advancing human life expectancy thing. I look forward to that applying to my case as well, and can’t wait to see which biopsy result wins the lottery (or is it the greatest number of votes?).

Yours,

David Lankes

The answer to the question about my biopsy results, by the way, was positive. Not positive, as in “oh goody,” but positive as in “oh crap.” The cancer had come back. After 6 months of aggressive chemotherapy and more than a year of bad health, I am on the “left side” of the survivability curve. That’s not the fun side.

When you get your initial diagnosis of Hodgkin’s Lymphoma it is almost a relief. You finally know what the hell is wrong with you and everything you read talks about the 90% survival rate. Just this morning my doctor told me that the good news is that 50% of folks who aren’t cured with first-line chemo survive. That is true, of course, until you fill out all of the paperwork for the next line of “salvage treatment” (actual medical terminology). There you learn that only 30% of folks in this line of treatment don’t have a reoccurrence of cancer. But I’m getting ahead of myself.

I still had cancer, though it was much reduced. What’s Plan B? This was the question I asked Dr. C. His answer was autologous stem cell transplant. In fact he said that’s pretty much Plans B-Q. Which led to the next obvious question: what is an autologous stem cell transplant?

His first answer was a not too helpful metaphor. He said, “It’s like Bugs Bunny. Elmer Fudd fires a shot at Bugs. Bugs lifts his head off his body, allowing the shot to miss him, then re-attaches his head.” As I said, not too helpful.

“In essence we give you heavy duty chemo that wipes out the cancer, but also your bone marrow. After the chemo you get your own stem cells back that regrow the bone marrow.” The he added, “Going through the chemo isn’t much harder than what you’ve already been through.” He lied.

With that I was referred back to the hospital where my cancer journey started. The hospital had a bone marrow transplant program. I was referred to Dr. G who headed the program. Dr. G added more details to the transplant procedure, which she said was routine, as they had been doing this work since 1994.

Science Fiction Meets the Dark Ages

For my non-medical readers it is time for a little more biology. All those blood cells that I’ve talked about (reds, whites, and platelets) are produced by your bone marrow. This is the spongy substance that lives in your bones (primarily your big bones in your legs, hips, and arms). The chemo regimen the oncologists were proposing (that I’ll detail in a second) would kill off this marrow, and thus my ability to make blood cells. So the marrow would have to be replaced.

Many folks have heard of bone marrow transplants. You may also have heard about how painful they are. Harvesting bone marrow involves drilling into these bones and sucking out the marrow. It is a long and painful procedure, and it is quickly disappearing.

It turns out that within this marrow are special cells, called stem cells (more technically called pluripotent stem cells – as opposed to the more controversial embryonic stem cells). These stem cells are like a blank template that can be turned into any of the major blood cell types. So for procedures like mine, you don’t need all the marrow, just these stem cells. It also turns out that these stem cells will every so often hitch a ride with white blood cells and escape the bone and circulate in your blood stream. This means that these cells can be harvested “peripherally;” that is through an IV. No drilling, no sucking, much less pain, much easier.

Now comes the amazing part. To transplant these harvested stem cells into me after my bone marrow is killed off involves nothing more than injecting the stem cells into my blood stream. The stem cells find their way back inside my bones and regrow the marrow, and start cranking out all my needed blood cells.

Now you’ll remember from the Bringer of Doom story that my bone marrow was clear of cancer. That meant that rather than grabbing someone else’s stem cells (a donor), I could use my own. When you donate your own stem cells it is called an autologous transplant. When you get the stem cells from a donor, it is called an allogeneic transplant.

So what about the chemo? Well, if you did the transplant with cancer still growing, it would just give the cancer a new source of cells to work with. So you need to get rid of the cancer, and that means chemo. Since the normal chemo regime of ABVD hadn’t done it, we’d have to go to a different and more intense chemo. As one doctor put it, “We hit you with a hammer. Now we’re going to use a sledgehammer.” That sledgehammer is known as ICE for the toxins used. And those toxins are beauts.

Take Ifosfamide; the I in ICE. This drug is derived from mustard gas. Mustard gas. MUSTARD GAS! Yes, yes, that mustard gas. World War I, hunker down in the trenches, All Quiet on the Western Front, chemical weapon mustard gas. The E in ICE is for Etoposide. This comes from the May Apple plant. Don’t let the apple in the name fool you; this plant is poisonous. Native Americans used to boil the roots of this plant to make an ointment that killed warts. Oh, and the C is Carboplatin – it is used to disrupt DNA replication. If that doesn’t sound scary you may want to review DNA: The Secret of Life by James Watson (I don’t want to give it away, but it turns out that you need DNA replicating to be alive).

So I was going to get three or four rounds of ICE. If that put the cancer in remission (as seen on a PET scan), I’d harvest my stem cells, then go into the hospital for the REALLY big sledgehammer: BEAM. This is the cocktail that actually takes out your marrow. It includes Melphalan. While you are getting Melphalan the nurses have you eating ice chips to restrict blood flow to your mouth. Why? Because Melphalan scars your digestive track from your mouth to your ass. The restricted blood flow in your mouth from chewing ice just prevents (or at least moderates) open mouth sores. Yeah, this was going to be fun.

My wife’s conclusion upon learning about the treatment: this is serious, and it is time for a second opinion. Turns out my brother-in-law Joe had a connection and could get a consult at the Dana-Farber Institute. After seeing the Cleveland Clinic, we knew that there was value in the term “world class institution.”

Dana-Farber is different from any other medical facility I had been to. By the time I actually sat down with the doctor to review my case, I had been enrolled in three different clinical trials. Seriously. When I registered they put me in one about medical records. After I registered they asked if any tissues that may be extracted from my examination can be used in another trial. Then a third one if I actually started care there. It was an amazing operation.

It turns out there was no tissue extracted during my examination. Instead my wife and I sat and talked with a very experienced doctor/researcher in Hodgkin’s Lymphoma. From this meeting I learned:

• My treatment to this point (6 rounds of ABVD) was what he would have recommended, and more cycles of ABVD wouldn’t have done any good.
• The ICE/BEAM transplant procedure would be his next step, and that stem cell transplants were becoming increasingly routine (no real reason to do it in Boston versus Syracuse).
• The rate of lymphoma in the world was increasing, while the rate of Hodgkin’s Lymphoma was not.
• It was fine to take a vacation in Disney before I started the whole process because the cancer was microscopic at this point.

So, with my wife, we decided to do the treatment in Syracuse under the care of Dr. G, and then we flew down to the happiest place on earth for Thanksgiving. We had a great time. We rode Space Mountain. We had Thanksgiving dinner with my Aunt and Uncle and their family. I only broke down once thinking about the coming chemo.