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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:


Friday, June 10, 2011

The Third Lap Around the Ward

What fun are hospital stories when there is no thrilling drama to relate? No next-door neighbor begging to be freed from his mortal coil, no Kia babbling in incomprehensible tongues and no bad nurses to complain about?


There was that Spinal Tap. Wednesday morning I believe it was. It happened in my room, and the whole thing took maybe 15 minutes. My friendly and familiar oncologist did the deed. I curled up in a ball facing away from him, and he put some shots of numbing medicine into the spaces between the bones. Then in went what felt like two giant needles. The second one hurt. I cried. Crying during a procedure slows things down a bit because they have to wait for your body to return to normal relaxing rates before they can continue. After that I didn't feel anything. Apparently they took some fluid out, and it was clear as opposed to translucent. A good sign. They also apparently put some methotrexate in, but I didn't feel any of that business either. Then this morning my doc came in and announced that the cancer tests they did on the spinal fluid came back negative. Hooray!
The next step is to go have a meeting with more Stanford Doctors about the possibility of a Stem Cell transplant. My doctor here is in favor of it, as I think I've said before. I'm pretty sure the Stanford Docs are too. At this point, the relevant question may be more about when it happens than if it happens. 
As my cancer tests have been coming back negative since the first big round of chemo, some people are starting to wonder if it's really necessary to go through six whole rounds before getting to the big finale. This week's was the third. Perhaps only a fourth would really be necessary? We'll see. 
As for the stem cell "transplant," it sounds scary but as I am learning is really more of a glorified transfusion. They take the cells out of your blood (which is easier to get at than some other fluids) and then "clean" the blood somehow of whatever cancer cells they find, regrow the stem cells (in like 20 days or so, I'm hearing) then give them back to you. I'm sure I'll know more after that meeting. June 15. Another trip north with the parents. Hopefully nobody passes out before this one.


But, meanwhile. What of me and my existential crisis, my big grapple with the human condition? Well, it continues. But, like a cork in the ocean—or a turd in the toilet—one must just stay try to afloat. 
This hospital stay has been, as I keep mentioning, highly uneventful, which is what you want most hospital stays to be. Orange-sauce goes in the port, comes out into the pee hat, and another day goes by. I've watched some exciting basketball games—go Dallas!—I am reading a good novel, and Annie continues to be an incredibly good-natured, fun, snuggly companion. We have matched each other well at cribbage games on the dingy patio, watched some good TV (what's not to love about Extreme Make Over - Weight Loss Edition? Each episode is like watching a whole season of The Biggest Loser). And we've watched some bad TV (I'm looking at you, Celebrity Fit Club, about which I will only say that it is hosted by Ant, and if you remember who Ant is, that's your own fault. We did). 


In the hospital there is less of a question about what I could or should be doing when. Except, of course, for the times Dr. Dad passes by to mention that Mozart was 27 when he died, and look at all he managed to accomplish! Or when he stops in to find Annie on her iPad and me at a crossword puzzle, and then suggests perhaps it's time to start learning another language. I find these comments incredibly frustrating and counter productive. Because they actually do make me wonder. Is he right? Am I crazy? Is being in the process of surviving cancer just not enough? I have to say, it has crossed my mind—I seem to be in the process of receiving a second chance at life. Doesn't that mean I'm meant to do something terribly significant with all this extra time? Does it?


Anyway. I'll be out of here tomorrow, which is nice enough to know. After that I'll just have to see what I'm in the mood for. I'm looking forward to going back to my new weight-lifting regimen at the Lifestyle Center and have been feeling a little more inspired to start cooking again. (If only I had a basket full of fresh organic veggies from some hearty Pioneer Valley-grown soil!) Still, even though Save Mart is currently standing in for a weekly organic farm-share, I reckon those seem like healthy, happy, manageable goals for now. And I think that's the best I can do.

Monday, June 6, 2011

Fo Stage and No Stage Visit the Sea

Annie and I took a trip to the seaside last week. I had grand plans to drive her all the way from Santa Cruz to San Luis Obispo on Highway 1, but alas, we didn't get quite that far. It turned out that a substantial part of Highway 1 had slid down the cliff during a recent heavy rain—as it tends to do every so often—so the road was closed midway. I was sad not to be able to take Annie all the way down my favorite part of the California coastline, but still happy to be escaping Visalia.


Instead of making that a big coastal loop, we drove straight over to Cayucos, a tiny little seaside town on the central coast.
It was the day after Memorial Day, and though we knew it must have been a busy weekend at the beach, by Tuesday afternoon when we showed up the town seemed deserted. We pulled in right in front of a fish taco shop and an ice cream store, so naturally we kicked things off by feasting on fish tacos and ice cream (see photo). We also had the good fortune to find a beachfront motel room at the Shoreline Inn...By The Sea!, for shockingly less cash than I'd expected to be charged for a beachfront room. From our deck at the Shoreline that afternoon we watched a pod of dolphins pass through the waves, headed North on some mysterious dolphin mission. 
One favorite moment: Driving up the coast awhile before sunset and pulling off at a vista point to watch the sea. We grabbed our always-handy backpack chairs out of the trunk and set them near the edge of the cliff. There we reclined, looking off into the horizon, as the sun sank lower and lower and sparkled off the water. Soon, two noises caught our attention. One, the gargling, bellowing, snuffling sounds of at least fifty elephant seals lounging on the beach below. I knew that they migrated to this beach every year, but Annie had no idea they were lurking down there and was quite captivated by their size and numbers. Most of them just laid on the beach sleeping, but a few were shuffling about in the sand and a few more could be seen bobbing around the rocks offshore. 
The second sound was a little harder to identify. Thwap thwap thwap! And then again, clearly and unmistakably from the direction of the ocean, thwap thwap thwap! It took a moment for our eyes to focus on the sound, but eventually we saw it: an otter, floating on his back in the foam just offshore, vigorously banging some kind of abalone or oyster on a rock placed on his belly. The thwap!ing went on the entire time we were sitting there, and at one point the first otter was joined by two more. Then all three of them could be seen, up close and personal, little fists clenched around their clams or whatever, working hard to get dinner open and into their mouths. Above and behind us, the clouds turned purple over the hills and birds swooped down into the sea. We were surrounded by nature, and it was so very alive. (Sunset photo taken later that evening).
The next day we visited the pier at San Simeon. I ever-so-casually suggested we walk out to a point at the edge of the bay, and to my great surprise, Annie was interested making the journey. (I had very fond memories of frolicking in the little forest upon that point in younger years with my dear friend Abby, and was extra happy to revisit the trail and the little woods up there.) We hiked through eucalyptus groves, past tall, grassy meadows until we came to the point where the land gave way to cliffs, a small beach below, and then open ocean. We forgot to take a picture from the point, but did remember to take one of it:
Our last day-and-a-half was spent visiting with said dear friend Abby at her parents' house in Morro Bay. Her mother, being a realtor and having a flair for interior design, has decorated the house like something out of an episode of HGTV programming. Like a page of a magazine. (Sadly there is no photo evidence to back up this statement). But believe me, with the windows in the front of the house facing the bay and the ones in back looking out upon golden rolling hills, it felt like luxury palace we would love to reside in—for a lot longer than two nights. If only!
Why oh why couldn't my parents have retired on the coast instead of staying on forever in dreary old Visalia? The question must be asked at least once while laying in Abby's mother's king size bed, staring out the window and watching the sea in the distance—or really anytime one is  contemplating the gorgeous vast blue openness that is the Pacific. Oh, to be able to open a backpack chair and stare into the ocean whenever one had the inkling.


It was a terrific trip. But those days are behind us now. As two weeks have passed since I left the hospital, it is now time to return for another round of orange cancer-sauce. I am sitting upon my latest hospital bed as I type this. 
As for the cancer—what cancer? There may still be some mutant cells hiding out in various nooks and crannies of my insides, but their numbers have been so minimized that I don't experience Cancery Symptoms anymore. I'm getting the impression the doctors can't really be sure when its' gone for good. Hence the excessive numbers of rounds of chemo. Just keep on blasting away at a foe we can't really see, that seems to be the method here. Plus, to take the added precaution that the cancer cells not migrate to my spinal fluid and set up shop in there, I have a spinal tap to look forward to this week. For that procedure, I'm told, my doctor will take a hideously big syringe and inject a nice squirt of oh-so-toxic methotrexate into my spine. From there the drug will travel along wherever spinal fluid goes, exterminating all the cancer cells in its' wake. As I certainly don't want cancer cells hiding in my spinal fluid, I support this procedure in theory. We'll see how it goes down in reality.


Still, things could be worse. Muddy Waters is playing on Pandora, my window lets in a substantial amount of light, and I haven't been hooked in to any tubes yet. Annie is playing poker on her iPad, and things are mellow. So far no neighboring patients have started screaming out begging for death, so that's cool too. I've got my crocheted jellyfish hanging from the IV stand, my inspirational photos on the walls. I have two books to read, a library of crossword puzzle and little game-books, a deck of cards cards, a cribbage board, and more. My gig is rigged, in other words. 
Now I just have to make it through the week.