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Wednesday, June 22, 2011

My New Birthday

There have been some game-changing moments in this journey of mine, and last week's trip to Stanford was a biggie. It's crazy how I can seem to be stumbling along in the dark, then—in a very defining moment—a harsh florescent light flickers on and illuminates the path in front of me. It's like turning on a flashlight deep inside a cave, or, for my Tolkein people, like lighting a torch while passing through the Mines of Moria—a whole host of unpleasant things are usually lurking in the distance.

My most recent meeting with the Stanford people was last Wednesday, and it's taken me this long (about a week) to process those three hours. Some of that time was spent mentally and emotionally adjusting to the new realities that were presented to me, the rest was spent transcribing the interviews we taped with the Transplant Specialist and the Social Worker. 
Was transcribing each 90-minute tape word-for-word really necessary? Probably not, but apparently there is still some residual journalistic nerdiness leftover from my CityBeat days. Plus, I literally have nothing better to do. So it comes as no surprise to me that banging out those tapes actually turned out to be enlightening and therapeutic. We had all come away so overwhelmed and confused by those whirlwind conversations that transforming them into words on a page helped de-mystify them for me, taking my understanding of what's coming down the pike in the next few months to a much deeper level.

So. What is coming down the pike? Three more six-day inpatient chemo cycles and then: a Stem Cell Transplant.  (Click that link if you're interested in browsing a complete .pdf of the pre-transplant info binder they gave me).
Until last Wednesday, the Stanford docs had been holding out their opinions about whether or not I had a Stem Cell Transplant in my future. However they did summon us for a meeting with a Transplant Specialist/Coordinator, so that had to mean something. Right?

A meeting with the Transplant Specialist/Coordinator! That sounded important. Plus, the lobby of The Stanford Cancer Center is so sleek and marbly that every time I come for a meeting I expect to be directed to an elegantly-appointed conference room, with sweeping views of the Stanford Campus and a long mahogany conference table in the middle. (Or at least a fancy wooden desk.) During the meeting, I would then expect to sip mineral water while my slides are put through Power Point. Then, once my case history was thoroughly reviewed, the time would finally have come to discuss the pros and cons of the treatment with my wise, compassionate Transplant Specialist and her highly capable team.

Of course, each time I show up, I am directed to the ground-level clinic, where me and my small entourage (mom, dad, Annie) are shuffled into one of several cramped exam rooms, all painted the exact same shade of tomato soup. I'm also made to wear a heavy flannel hospital gown, which, for the actual amount of poking and prodding they do, is totally unnecessary. My butt crinkles the paper of the exam table as my family perches thigh-to-thigh on folding chairs. We all slump wearily, listening to the medical bustle in the corridor outside, chuckling at ourselves for continuing to arrive with the same illusions. (I know I'm not the only one who expected mahogany furniture.)

When the doctor did arrive, she was kind enough, but they're always rushed. This is not to say they aren't thorough. They are. They're just speedy. One minute she's shaking my hand hello, the next thing I know she's on her way out, saying her nurse will bring me a binder with everything I need to know about my Stem Cell Transplant. I know from my tape that valuable, informed, comprehensive phrases passed through her lips while we all sat in that tiny room together, it's just fascinating how little is retained in the moment. 

The second meeting, with the social worker, was even more overwhelming. We met her in another cramped, windowless room in the bowels of the Cancer Center, this one decorated with inspirational nature posters instead of medical equipment. She was a tiny woman with a very loud voice and, though she smiled a few times and made a couple jokes, gave off a mostly humorless demeanor. 
Other than a few tidbits about my post-transplant care—both tap water and bottled water will need to be boiled daily before I so much as brush my teeth with it, bananas must be washed and dried before they're peeled and fed to me—the biggest thing we all took from that meeting was the new Marijuana rules. As in, I can't have it anymore. At all. In any form. Because anyone going through any kind of transplant at Stanford has to sign an abstinence contract saying they will not consume any drugs or alcohol, including weed (including edible weed as a form of cancer therapy, apparently) for two months prior and six months after the transplant. God. Talk about seeing down the path and seeing it will suck. 

Anyway. The stem cell transplant. Here are the golden nuggets I have managed to grasp that explain why I need to have this transplant and what it will be like:



1. Both my Stanford doctors and local Oncologist are in agreement that I don't have a "normal, run-of-the-mill lymphoma." Apparently, the fact that it bounced back after the first small dose of chemo makes all the medical people in my life quite nervous. (My local doctor just told me recently hat he's been hoping I'd be able to get the transplant ever since that moment in time.) The word they all like to use is aggressive. It seems my cancer is/was just too aggressive to sit around and wait for it to come out of remission. Even the specialists at Stanford don't see a case like mine—with a cancer that behaves this way—very often. This means that the tools they usually rely on to make these decisions ("caseloads of literature," to quote the Transplant Lady) just aren't available to them, and they have to go with their gut.

My local doctor also pointed out that first remission is the most opportune time to do this procedure—while the cancer cells are beaten back and my body is functioning healthily. If I were to wait for it to return, it's possible it might come back meaner and stronger, and be resistant to the chemo next time. 

2. This part is really key: Even though it seems so encouraging that my scans have been coming back cancer-negative since the first heavy dose of chemo, those tests only show up positive when there are more than 1 billion cells present. One biiiiillllliiiiiooooon cells! Physically, that's a centimeter's worth of cancer cells. 
I personally find it shocking that modern technology has not caught up to being able to detect, say, a thousand. Or less! And that there's no way to know if it's really gone. So that's what the doctors are saying without saying it: the chances of 100, or a thousand, or a million, or 999,999,999 cancer cells being leftover after the chemo is just too great. 

3. So. Stem Cell Transplant. Or, technically, "High Dose Chemotherapy with Autologous Stem Cell Rescue." 
There are two important words in that long name. One is autologous, which means that they will actually be using my own stem cells, vs. those of a donor. (This decreases the risk of "up-front mortality" from 20% to about 3%. It's just far easier and less risky to take one's own cells out of their body, tinker with them, and give them back, which is what's going to happen here.) 
The second important word is rescue, meaning this procedure isn't even technically referred to as a transplant. (Again, they're not taking anything out of anyone else and putting it in me.) At one point one of the Stanford docs referred to it as a "glorified transfusion." He was trying to minimize the scariness of the procedure—nice try, Dr.Villalobos—but he's basically right. 

4. So what the hell is going to happen, and how is it going to work? 
Ok. So first, before I'm admitted to the hospital, they'll give me some more really heavy chemo. That chemo will continue to kill off whatever cancer cells are still lingering. Then I go home for a week and inject myself daily with shots that stimulate white-blood-cell count. White blood cells are born as stem cells, and these injections will force the production of so many stem cells that my bone marrow won't be able to contain them all. They will be pushed out into my bloodstream to await collection. That's phase 1. No biggie yet, right?
Phase 2 is the collection phase. I will go back to Stanford and they will connect my Hickman Catheter (to be inserted sometime at the beginning of all this) to a machine that draws the blood out of my body, spins out the stem-cells, and then gives me back my blood—and everything else in it. How sci-fi is that? 
Phase 3 is the hardest part. Only then do they admit me to the hospital, because this is the time they will crank up the chemo so high—I think seven times the amount I'm currently getting in the hospital—that what remains of my immune system will die. The idea is to completely clean out the system and start from scratch. During that time, my stem-cells will have been living in a freezer somewhere. After that last week of chemo, they will put them back in my body through an IV drip, just like a blood transfusion. How weirdly simple. 
The doctors call the day of stem-cell replacement my New Birthday. For about a week or so after my New Birthday, those stem cells should be settling in back at home and getting cozy in my bone marrow, ultimately repopulating my immune system and bloodstream with cancer-free cells! 

5. That's basically all there is to it. The problem is that I can't just hop out of bed a week after my New Birthday and carry on with my life. It's going to take time for my body to build a new immune system. Of course, with a fledgling immune system, I'll be like a hermit crab or a snail without a shell. Completely vulnerable to viruses, bacteria, fungus and the like. So once released from the hospital, my crew (mom, dad, Annie) will have to take me to rented apartment in the Stanford Vicinity and treat me like the real Bubble Boy I'll be. (Section 6: Infection Prevention Measures is by far the most interesting part of that binder). There are millions of things I won't be able to eat. And plenty more things I won't be able to do, for varying lengths of time afterward. Among the most random: no flossing, no gardening, no golfing, no carpentry work, and no live Christmas trees (for six months after transplant).

For me, one of the most disheartening parts of all this is just the length of time it's going to demand. I had thought perhaps I'd be returning to Massachusetts—and some semblance of normal life—before Thanksgiving. Now it seems my New Birthday won't be until mid-October, and then there's the recovery, and at least three months worth of follow-up visits. That's pushing the CaliforniCancerCation into early 2012. I got here in March 2011. You do the math.

So I have seen down the path, and it's longer than I'd like it to be. It's like starting to solo half-dome and having the mountain grow another couple thousand feet while you're still clinging to the rock midway. I'm still not worried about falling off, I'm just not that jazzed about the climb. 
My biggest obstacle continues to be day-to-day living. Boredom and ennui are my biggest enemies. And I'm not particularly looking forward to three more weeks of chemo without the help of my trusty friend THC. But I'll survive. One way or another. I'm sure of it.

4 comments:

  1. Very fascinating stuff. I am actually contemplating reading this entire PDF. I was struggling to envision what a stem cell transplant in your case meant, but you broke it down really well. That is an AWFULLY long time to recover and abstain from weed. But hopefully, it does wonders and it is all very worth it.

    Great idea to tape the conversations. I often feel dizzy after leaving the doctor just over pretty usual stuff...can't imagine trying to process it all with something as complicated as this.

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  2. NO FLOSSING!!!! I had not heard about that small detail yet. I don't know if people know this about Kia, but she really likes to floss.

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  3. If it helps, I'm enjoying following your posts. If you're bored, please post more.

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  4. No X-mas tree? Those bastards.

    A year is a good, round number, don't you think? I know it sounds like forever, but it will be behind you before you know it.

    I recently read an article in the New Yorker about a baby with cancer and the dad who wrote it had some pretty interesting things to say. For one, he said he doesn't think human beings really, truly are able to understand and feel the weight of our own mortality. He says it's just not possible because, if we did, it would be debilitating. We all just wake up every day and pretend it isn't a real possibility.

    But you've now dealt with something we all try so hard to deny. And you, the girl who's always been an old, wise soul stuck in a beautiful young yoga body, are going to be even more self-actualized and complete than you already were. You are going to freakin' conquer cancer, man. That's epic.

    If I were to list some of my teachers/inspirations in life, you would be one of them. And I'm not just saying that because you have cancer.

    When I would read your articles, I always saw humanity in them. You were able to interview people and actually inject their souls and personality onto the page. I try to remember that and copy that every time I sit down to write.

    Anyway, I know you've already heard this a hundred times, but I'm here crossing my fingers and hoping you seriously consider writing a book. We can help you self-publish if necessary. We can get a kickstarter going and get you some seed money so you can have that $500 and a room of your own where you can kick back and write.

    Love and miss you. Here's to seeing those beautifully flossed white smiling teeth soon.

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