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A Stem Cell Transplant Story Part 5: Daily Gratitude

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Published on July 30, 2020

Gratitude After A Successful AML Stem Cell Transplant

In the final story of Steve's five-part stem cell transplant journey, Acute myeloid leukemia survivor Steve Buechler discusses with Patient Power Co-Founder Esther Schorr what life looks like after a stem cell transplant. Steve shares how often he returns to his doctors for check-ups and what post-transplant complications he did and did not experience. From receiving all his childhood immunizations again to reaching important milestones, Steve's journey proved to be one of deep gratitude. He has since spoken with or visited over 150 AML patients who are at the beginning of their medical journey.
 

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Transcript | A Stem Cell Transplant Story Part 5: Daily Gratitude

Esther Schorr:

So now you're at a point where you're really very far out from the event. What happened as far as, did you need to see the transplant oncologist again? Is there follow-up that happens at some interval, just from a practical standpoint?

Steve Buechler:

Yeah, it was at this day 180 visit that I said, "Okay, when do we meet again?" And she said, "Well, let's plan on six months."

Esther Schorr:

Wow.

Steve Buechler:

"Whoa." Yeah, that was another sign, that things that really, really changed from daily clinic visits, not that long ago, to a six-month interval. And so, this was also the time when the care really phased back to my original induction oncologist at my first hospital. So it kind of shifted back to her. So I saw her for monthly blood draws, and bimonthly consults, and they've gradually spread out.

Now I have those blood draws four times a year, and I see her just twice a year. So it was interesting how the care shifted back to her. And if I had any GVHD or transplant issues, I was to go back to the transplant oncologist, otherwise, the original oncologist.

Esther Schorr:

Kind of a handoff.

Steve Buechler:

Exactly. Yeah. So the only return to the transplant oncologist was at the end of year one, for ... That's when they had to start redoing my childhood immunizations, because they'd all been wiped out by the transplant,

Esther Schorr:

It's like a re-boot, when you reboot or repave your computer.

Steve Buechler:

Yeah. Yeah.

Esther Schorr:

You have to put the virus protection back on.

Steve Buechler:

And even then, they could only give me dead viral sources to prompt immunization in the first year. I had to wait two years before they used live viral sources for the rest of the immunizations.

Esther Schorr:

Wow. Okay.

Steve Buechler:

But by then, we were pretty far out, and I was confident that things were on track.

Esther Schorr:

So, looking back now, what is the biggest thing you wish you knew about the transplant journey you went on, at the start of it? What would you have wanted? Was there something you would have wanted to know ahead of time, that you didn't know?

Steve Buechler:

Well, what really comes to mind is I'm glad about the things I didn't know, which we just talked about, the lethality of this disease. The first time I heard hard statistics, it was when I was consulting about a transplant. They said, "If you go this route, it looks like this. If you go this route, it’d look like that." And neither one of them looked that good. So again, maybe a little knowledge or maybe a little ignorance, is a good thing.

I think I was very well informed. I was exposed to lots of different kinds of information. I think what I may have missed, is actually something I'm trying to provide now, is a personal story because you have all of these clinical descriptions of all the things that could possibly go wrong because they have to warn you about that for humanitarian as well as probably legal reasons, and it's just overwhelming when you read all this kind of stuff. What you have to learn is that much of the bad stuff won't happen to you or to every patient and that every patient's path is different.

I think I heard what I needed to hear, or what I was able to hear pretty much when it was appropriate for that to happen. I said I came late to an appreciation of how deadly this disease can be. One oncologist said, "Yeah, once it's diagnosed, life expectancy can be measured in hours, days, weeks, or months if you're lucky." That's how aggressive it is. I'm just glad I didn't know that.

Esther Schorr:

It's good you didn't know that at the beginning. Now you've talked to so many transplant patients, Steve, and while every story has its unique parts, were there things that were unique about your story versus what you know now having talked to so many people's kind of normal course of events?

Steve Buechler:

I think it was a combination of things that made my story unusual, if not unique. And I think of it in terms of this, I call it the trifecta. I got into remission on the first try with induction chemotherapy. That doesn't happen for every patient. Sometimes they have to go through multiple rounds. In rare cases, they don't ever get into remission. For my particular disease and genetics and all that, they told me there was about a 60 to 70% chance we'll get you into remission on the first try. So that was kind of expected. Successful engraftment happens for most patients, but it rarely happens within a mere three weeks, and to be 99% engrafted that was unusually-

Esther Schorr:

That was the super start of things.

Steve Buechler:

... early and unusually complete. But the most unusual thing was that I never had graft versus host disease. They told me for my specific disease and genetics and all that kind of stuff, there's about a 60 to 70% chance of acute GVHD within the first 100 days. Never happened. And that reduces my chance of chronic long-term GVHD to something like 20%. And I never had that. So the combination of remission, engraftment and no GVHD that's as good as it gets part that my oncologist talked about. That's pretty rare to have all three of those things happen.

On the other hand the infections and the side effects and the complications I had, there were a lot of them. I think that just comes with the territory. I don't know that any patients avoid their own version of those kinds of things, because what they do to you to cure this disease is just so brutal that you're going to get sick. You're going to get infections. You're going to get a variety of things, which fortunately these folks have all seen before. And if there's a remedy, if there's a treatment, if there's some way to ameliorate it, they know what it is and they'll do it. I think patients should never hesitate to speak up about conditions or symptoms that are concerning to them because at least in my case, the medical folks are willing to try a lot of different kinds of things to keep you healthy and foster recovery.

Esther Schorr:

Steve, you now spend your time giving back. What motivates you to do that now?

Steve Buechler:

Well given my outcome, I feel more gratitude than I know what to do with. If I tried to express all the gratitude, I feel to the doctors and nurses that saved my life, I'd camp out on their doorstop and shower them with rose petals and just all kinds of things that would be really creepy. That's not appropriate behavior. So if I can't sufficiently thank them, what I can do is try and pay it forward. And so I'm trying to be, for current patients, the kind of person I wished I would have had back when I was being treated and someone who could say, "Here's my story. Here's what might happen to you. Here's how I reacted." That personal story, I think can be very, very helpful in dealing with the disease, in healing, in being aware of options. It never replaces medical advice or medical care, but it just addresses the person rather than the patient.

One of my writing mentors talks a lot about that. A guy named Arthur Frank, who wrote a book called The Wounded Storyteller. He talks a lot about how powerful modern, technical Western medicine is, but it's still basically about treating the body and something has to happen to treat the person as well. For me, that was the coping mechanisms I mentioned and writing, other people may have different things. But it's worth attending to how do we bring about a more holistic kind of care that speaks to the person as well as the patient, because the success of both is really kind of intertwined.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

 


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