Treatment updates

Just some talk about general Butterscotchy stuff here.
Are all 3 of you going bald again? Did it even grow back from last time yet?

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Posts: 939
Location: #1 Australian Fan

I shaved my head for Sam's first round of chemo, but I kept shaving it all along.

I find that, for me, life is easier without hair.

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Posts: 1371
Location: St. Louis, Missouri, USA

Mine is shaved. I kept it that way more or less, but I'm too lazy to do it all the time.

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Posts: 1722
Location: Dallas, TX USA

Cancer UPDATE!

I had a PET scan yesterday. I sat in the beige dungeon that is the hospital and had some radioactive sugar (encased in a steel bottle, to protect the nurse administering it) injected into my arm, waited an hour while drinking a Horchata-like beverage called CONTRAST, and then slid back and forth in a large metal tube. It wasn’t as sexy as it sounds.

I’ve done these a few times now and am content to say they don’t scare me or give me anxiety in the slightest. But they do require my pants to be pulled down, to below the knee. Evidently the PET scan machine is powerful enough to see through my body and watch cells metabolize sugar, but if my pants are up ALL HELL WILL BREAK LOOSE.

I’m not sure if I’m missing the point here or if I’m just on to the scheme of nurses everywhere to declothe me. I believe it to be the latter.

Today I met with my doctors and went over the results. We watched the two scans, one from yesterday, the other from before I began treatment, as the doctor slid a dial that walked through my body in slices, beginning slightly above the eyes and working down to that pantless pelvis. The previous scan, situated on the right, flashed like the night sky in a battlezone - white light burned inside bones and atop most organs. The scan from yesterday sat contentedly quiet, save for a few embers still burning in that left armpit.

The docs were ecstatic, as was I. A full-response before the first stem-cell transplant is the best thing we could hope for. And here we are, near full-response, even before the final, three-day R-ICE treatment, which begins Friday.

All this good news is really just a way to hook you and segue into why I haven’t been talking about it. By it, I mean the cancer: the second round, the second massive test of my own endurance, optimism, and spirit. The second dragon battle.

When I got rediagnosed back in February I walled myself up. I watched as my loved ones took the news hard and I decided that it wasn’t yet time to deal with this. I needed to be there for them, to be okay, to maintain a shiny demeanor of optimism and hope. And so I did, for about 4 weeks. I helped those close to me back up-and-running, went through all the reassurances I could, and kept my rage, sadness, and cosmic disbelief to myself.

But about two weeks ago I finally felt that the space was free enough for me to break down - to admit that I was just sitting here, waiting for someone else to tell me how the fuck this could possibly be a good, meaningful thing for me to go through again.

I sat on the couch and bawled my face off to Diana, while explaining how the month of making sure everyone knew they’d be okay if maybe I died had enraged me. Because at the end of it, they would still be around to grow, to handle whatever grief they had, and to move on. They’d still be around to mine the silver linings - to live. And as I sobbed the words out I realized what had happened.

For the past month I haven’t been LIVING. I hadn’t met this challenge head on, roaring, as I claimed I always would. I’d failed myself on this fundamental tenet, one which I thought I’d have burned into my psyche from the previous round.

I accidentally became a bystander to my own life. I forgot the value of Process, of breaking gigantic difficulties into manageable chunks, and of engaging with and PLAYING with the constraints given to me.

The benefits of getting cancer were quite clear the first time: The importance of doing the THING you want to do, of creating meaningful work, of finding and loving your family, of not wasting time. These are things we hear often, but when stamped with an expiration date they took on a new frame of meaning - one in which the cliche that from before became a real rule to live by, pruning away a lot of the bullshit most people sit through and call “living.”

The low hanging fruit of meaning has already been plucked from this cancery experience. It’s only the stuff on the higher branches that remains. Getting to those higher branches requires a lot of work, and maybe a lot of help. I don’t have any clue what could be up there, how to scale this effectively, or what equipment I’m going to need.

That’s where I’ve been these past few weeks; Sitting under a tree of meaning, waiting for the wind, gravity, or an unknowing ally to give me a Newtonian epiphany.

Now it’s time to climb.

Thanks to all of you who have sent well wishes, stories, and armpit targeted energies my way. Your patience while I got this wrangled is inspiring, humbling, and lovely.

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Posts: 329

Great to hear from you, Sam! Hold on positive thinking!

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Posts: 570
Location: Cracow, Poland

Hey Sam!

And when you're up that damn tree, even if you don't find as much as you would have expected, remember to watch the world from there. The view is probably beautiful.
Not a lot of persons can claim to get this far.
You may already have passed the worst part. You chose to fight. You chose to climb your metaphorical tree. You're one hell of a badass.

And you already have all the equipment you need: incredible courage, incredible willpower, incredible smartness.
I don't think I know anyone who could handle everything half as well as you did it.

Hang on, we're still going to send you wishes, stories and armpit target energies your way as long as it is needed, and even after.

We're all with you!

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Posts: 1831
Location: Bordeaux, France

What's at the top of the tree? The best damn view and an epiphany of accomplishment. Good to hear you're making headway, not just with treatment but with all the stuff that comes with it. You know we're all here for you, no matter the physical distance between us, that doesn't matter one iota because we're right there with you, hun. <3

And don't forget, this is a journey... and for every two steps forward there may be a step back, but as long as you keep moving you'll get there eventually. You're allowed to stumble, you're allowed to fall... you're human, it's expected and encouraged. Just get back up, dust yourself off, and keep moving forward again.

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Posts: 939
Location: #1 Australian Fan

Can I just say I cried? I love this community.
We're all behind you, Sam!
Prayers and a lot of love and virtual hugs.

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Hey, everyone. There hasn't been an update here for a while because as the treatments wear on Sam becomes (understandably) less interested in talking about it. We were going to podcast today, but Sam is feeling particularly shitty so we're going to hold off for a day (or several). So I'll take this time to give you a treatment update.

Sam finished the last round of pre-transplant chemo this past weekend. It was a particularly nasty form of chemo (referred to as BEAM therapy, for anyone wanting to look it up) that indiscriminately obliterates actively dividing cells in the body.

The reason cancer is bad is because cancer cells divide whenever they damn well please, and in super-aggressive cancers the division rate can approach the maximum rate possible by human cells (a doubling in cells every ~24 hours). By contrast, all of the other cells in your body either never or very rarely divide. The exception to this rule are adult stem cells, such as those found in hair follicles, mucous membranes (like the mouth), and the intestines.

So, non-targeted chemo like what Sam just got is a common way to kill cancer, but it also kills healthy cells when they divide. The reason patients survive the chemo is that most of their cells are not dividing during treatment. But one of the main reasons patients get super sick from chemo is that some cells are indeed dividing during treatment, especially stem cells. Unfortunately, a key mechanism that allows cancer to escape treatment is that a small fraction of the cancer cells won't have divided during the treatment window.

SO. Sam finished that chemo and was feeling pretty good for a few days. Now, though, he is hitting the peak of the toxic side-effects from the fact that chemo is a horrible poison. The side effects are expected, pretty well understood, and generally have powerful drugs to offset them, so Sam will come through the worst of it in a few days. He's handling it like a badass.

In parallel with all this came the first (of two) bone marrow transplant. Your blood supply (red blood cells, immune cells, platelets, and so on) is maintained by a very active pool of bone marrow stem cells. These cells are completely wiped out by the chemo, and so they have to be replaced otherwise the patient literally cannot produce blood! This first transplant was of Sam's own stem cells, harvested a few weeks ago, and is referred to as a "rescue." The chemo is so intense that they have to take your stem cells out of your body to protect them, then put them back when it's over! Sam completed his self-transplant on Monday.

So now we wait. Sam is and will continue to be closely monitored and drugged to handle the side effects of his LAST DAMN ROUND OF CHEMO. At the same time, he is having his blood cell counts checked regularly so that they can make sure his self-transplant worked. He'll be stuck in the hospital until he is able to make his own blood cells again, which can take several weeks.

If you're wondering what you can do, unfortunately there's not a lot. But Sam does love hearing happy thoughts and well-wishes from friendly people, as you all are. Seth and I are taking a Crashlands break for the rest of the day (and maybe week) to make some positive-vibe stuff and you'll be invited to chip in (more info will be forthcoming).

And, as always, you should help other cancer victims find donors. Signing up is easy (I've done it) and free (though they'd love donations), and donation is usually a nearly-painless process.

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Posts: 1722
Location: Dallas, TX USA

We all know that Sam is a badass. Sam, keep it up! I believe you'll be like newborn soon!

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Posts: 570
Location: Cracow, Poland


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