We're so far from 'plan A' or 'plan B' that I'm just calling this Plan S for "Plan Sam." A.K.A. the plan that finally works!
Before I get into the details, I'll start with the most important thing: Sam is feeling much better. We're still living in the hospital, but he's much more alert, eating more and we're spending our days binge watching "The People vs. OJ Simpson," instead of being really miserable and panicked. It's not ideal, but it's far better than last week, so we'll take it.
Over a week ago, when Sam's doctors presented his case at the meeting with a number of other leukemia and transplant experts, the team they consulted with didn't have any new ideas. So, Dr. "No One Is Giving Up Here" and the attending at the hospital, Dr. Becker, forged ahead with one of the antibody studies they'd already investigated. While there were originally a few antibody study options on the table, they were forced to proceed with the one that would move forward the quickest since Sam's blast count was rising at a rate faster than OJ's white bronco. So that started last Wednesday.
Plan S includes 6 days of chemotherapy and one day of an antibody treatment, which will be given on Tuesday, Feb. 21. This method is essentially a middle ground between only giving chemo, which wasn't an option due to toxicity, and only antibodies, which weren't an option due to the Graph vs. Host Disease (GVH).
Today Sam's on day five of the chemo. So far, everything is going as planned. Like I said before, he is actually feeling better with the chemo drugs because they also knock back the symptoms of the GVH... which really says something about how miserable GVH is.
After Tuesday, he'll have a break to recover where his blood counts are dangerously low again. They'll monitor him closely and we'll all do everything we can to get him into the damn transplant procedure as soon as humanly freaking possible.
Anyway, I wanted to give you the update that we have 'Plan S' underway and so far, it is going well.
No spoilers for how our T.V. show ends, ok? We can't wait to find out what the jury decides on OJ! (kidding)
Holy schamoley, you guys.
Sam and I were blown away by the love you shared the last couple days. I think I may have said that in the past, but this is new. On Sunday, I wasn't sure if I was strong enough to endure this bs again. (And if I wasn't, how could Sam possibly be? I worried and worried about that.) But then, so many of you reached out. Sincerely, when someone says in earnest that they're sending good vibes or prayers, it's powerful. Like, almost tangibly powerful. I can't explain it. Well, actually, I can. Sam woke up today feeling a lot better than he had in a week. He keeps saying he had "vim" today. I really don't know what that means, but guessing based on onomatopoeia and the sheer number of poop jokes he made, I think it's a god thing! Sure, the drugs the team started yesterday could have had to do with it, but he's never responded to GVH drugs that fast, so I think it was YOU.
Our friend Mindy keeps saying, "love is all there is," and this weekend, she was so right. Literally, love is all there was. Nothing else went right except for so. much. love. It was swirling all around us so densely that when we needed it, we could just reach up and grab some, and it was always there.
Anyway, a common theme in talking to you and reading your messages today was that I freaked you all out pretty good with my last post. Things seemed bleak and scary. I'll admit, I was in a literally and figuratively dark place when I wrote it. I think the biggest problem was that I didn't mention any solution.
So, I'm writing tonight to say that while yes, things are a little bleak and a lot scary, THERE IS A PLAN in formation. Aright, I guess that means there is no plan. But, THERE WILL BE A PLAN.
More importantly, No One Is Giving Up Here. Like, not at all, even a little bit. Sam is still working toward a cure for this. He could have chosen to hang it up a long time ago and go on hospice. But he didn't. He's here to fight. I hate how cliche that term is, but unfortunately, we all know that "fighting" is probably the best way to describe it. Even though his body decided to take ten steps backwards last week, his spirit, thanks in part to you, ran 10 miles ahead. OK? OKAY? Ok. Glad we had this talk.
To reassure all of you out there who love Sam that No One Is Giving Up Here, I thought I'd discuss what we've learned over the last few days about what might come next so that we all have something good to hope for and interesting to read about.
Before I get too far into this, I have to say that I am no scientist, so think of this as your 30,000 foot overview of exciting new clinical trials* for curing cancer. To any scientists or doctors out there reading this: I'm truly sorry for all the ways I'm about to slaughter your medical vocabulary. Anyway. First, some background info.
Chemotherapy has lifetime limits. The toxicity in your body builds up, and after so much, they worry that impact to your organs will outweigh any potential good that could come from chemo. Sam is at or very near those limits for a few classes of chemo drugs that they'd need to use to effectively knock back his leukemia again. Because of this, the team here in Seattle is exploring a few clinical trials to kill the leukemia** without heavy doses of chemo.
So, we've been learning about these low or no-chemo clinical trials for getting him back into remission. Here's how I understand them: chemo targets and kills all rapidly dividing cells. This is effective at killing cancer, but it also kills a whole lot of good cells too, making your hair and nails fall out, impacting your organs, and making you feel like shit. About ten years ago however, scientists discovered that leukemia has its own stem cells, just like humans do. Within the last ten years, they've studied ways to use antibodies to effectively target and destroy just the rapidly dividing leukemia stem cells, and not all the other good cells. They're just now at a point of starting to test this on humans. Because they're not messing with as many good cells, apparently there are very low side effects to these antibody treatments. Some can even be done as outpatient procedures. There were four trials Sam was potentially eligible for on Thursday. Now that he's officially been diagnosed with GVH, he apparently could maybe still be eligible for two of them.
I don't know about you, but this all sounds like a pretty brilliant idea to me. The scary part is that these trials are so new that there are no results yet about success rates, or even really side effects or useful things like that. It's fairly uncharted territory. But, when you are looking at uncharted territory or organ failure, the former sounds kinda good.
Tomorrow, Sam's O.G. chemotherapy doctor (a.k.a. "Dr. No One Is Giving Up Here") is presenting Sam's case in a meeting of a whole bunch of doctors to discuss what the group thinks might be best for Sam. I'm happy this meeting is happening and will keep you posted.
Thanks so much for being incessant cheerleaders, vibe senders, joke crackers, prayer warriors and love givers.
We love you right back.
*If you want a good opportunity to donate to this research, some of Sam's best friends from high school are skiing the 52k Birkebeiner Ski Race to raise money for Fred Hutch Cancer Research Center in honor of Sam. Here's the link to their page. ...Love. See? It's EVERYWHERE.
**Reminder, the only option to CURE Sam's cancer at this point is a bone marrow transplant - a different kind of bone marrow transplant than last time. He can't just have chemo without a transplant because his form of cancer is so aggressive that even if it gets him into remission, it'll only be a matter of time until the cancer comes back. Not all cancers are like this: many people get into remission and never relapse. Unfortunately, that's not the case for Sam. (Exhibit a: this November he got into remission, and he relapsed already last week after only a little over two months.) Anyway, you cannot have active leukemia going into a bone marrow transplant, hence the effort to get him back into remission. again.
Sam's leukemia is back again, putting his transplant and hopes for a cure back on hold. On top of that, today he was finally diagnosed with a resurgence of graph versus host disease after six days of round the clock vomiting and diarrhea. He was admitted to the hospital on Thursday evening for closer monitoring and to start IV nutrition to sustain his weakened body. He hasn't been able to keep more than a few bites of food down since Monday. In between incessant tests and trips to the bathroom and interruptions from doctors and nurses coming in to hang meds, he sleeps about 20 hours a day. We don't know yet how the GVH impacts the treatment options for the leukemia. Because he has two other viruses on top of the GVH, they won't let him leave his small hospital room even for a walk in the hallway.
The ~four hours a day he is awake, he's able to make jokes and talk, which is a gift. And, his "brother" Pete came to visit this weekend - also a gift. I'm so grateful for these two things and the constant, powerful love from all of you. But in regards to the rest, I'm actually speechless. For one of the first times in this whole cancer ordeal, I have no idea what to say.
Sam leaned against the wall of the dark, packed elevator, eyes closed, wearing a mask. His jeans were covered in vomit. I stood guarding him from falling over and guarding others from the sick person in the clinic, while staring distantly at the floor.
As the door began to open to the sixth floor, I realized how stereotypically “cancer treatmenty” we must have looked. Or maybe something more along the lines of how the cast looks at the end of “The Hangover 2.”
They don’t know why Sam can’t keep any food down this week, but the triage nurses got him set up with warm blankets and a bag of fluids, and the excitement died down shortly after we arrived. Sam fell asleep after a few rounds of questions from the nurses. I sat in the dark and played calming music from my phone.
Yesterday as we were leaving the clinic after having the same kind of morning as we were today, we learned that Sam’s peripheral blasts shot up to 5%. There’s no option to blame a computer error now. That means that, more than likely, he’s already relapsed and thus, missed his window for the bone marrow transplant, which is his only shot for a cure.
A few songs later, the new attending doctor on the Bone Marrow Transplant service came in to meet Sam. They discussed Sam’s nausea and vomiting for a while, and he admitted he didn’t know what is causing it. Next, he addressed the peripheral blasts we’d learned about yesterday afternoon. As we feared, he said he would not recommend a transplant with active leukemia. He said that while Sam’s chances of surviving a transplant remain low, going in with active leukemia means that even if he survived the process, there’d be a high likelihood that his leukemia would relapse once again after it was all said and done. He said he’d set us up with a meeting with Sam’s original chemo doctor – the one who convinced us to come down here and got him into remission back in November. He said she’d be the one who could discuss ongoing clinical trials that might be able to get Sam back into remission without the regimen being too toxic for his system.
We’ll meet that doctor tomorrow afternoon to hear what she’s got for us.
Meeting with her under these circumstances feels like groundhog day. I’m struggling with the fact that this means that the last three and a half months of Sam’s suffering were for nothing. Sam reminds me that he’d be dead by now if we hadn’t come down, which puts things in a dark, yucky kind of perspective.
The doctor left and the lights dimmed again while Sam’s IV fluid drip continued. He fell back asleep. Sitting in the dark once again I realized I’m pretty angry that the doctor last month didn’t jump at moving forward with Sam’s transplant during the short window when he would have been eligible. I’m frustrated with “the system” of the Seattle Cancer Care Alliance. I could rattle off a few other upsetting things. But when I really think hard about it, I realize that I’m just mad at cancer. Really mad.
I’m mad that Sam isn’t up for doing the things he loves. I’m mad about all the experiences we’re missing out on, with each other and our friends. I’m mad that he’s fighting this for the third time. I’m mad about a buncha’ things, but how useless is that?
Sam’s IV pump stopped. He was disconnected and the nurse told him we were free to go, after giving instructions on how to deal with his symptoms the rest of the day, and to call if things worsened.
We shuffled out into the hall, this time carrying a bag containing Sam’s vomit-pants, which had been replaced by the most comically massive scrubs you could imagine.
We wandered back into the corner of the elevator and out to get in the car looking slightly less “cancer treatmenty” on the outside, but very much more on the inside.
Sam fell asleep almost immediately when we arrived back at the apartment. I took myself out to lunch.
I laid down by Sam a few hours later as he woke up and he said something that made me laugh. It felt so good to do so after these awful two days. I remembered that, though it sucks, we are capable of making the most of this time. I remembered that while the world and the treatment system and the myriad of doctors and specialists feels big and scary, at least during it all, we can lay in bed together and laugh about how terrible today was for Sam’s pants.