Skip to Navigation Skip to Search Skip to Content
Search All Centers

A Stem Cell Transplant Story Part 4: I'm a Survivor

Read Transcript
View next

Published on July 30, 2020

Steve's AML Stem Cell Transplant Survival Story

In part four of a five part series, Acute myeloid leukemia survivor Steve Buechler shares his stem cell transplant story with Patient Power Co-Founder Esther Schorr. Steve describes the moment of "serene euphoria" he experienced when making it to the Day 180 appointment, and the realization that, "I really believe I'm better. I'm no longer a patient, I'm a survivor."
 

Featuring

Transcript | A Stem Cell Transplant Story Part 4: I'm a Survivor

Esther Schorr:

So Steve, we know that day 100 was the benchmark day, as it usually is for transplant patients, but you still needed to take some extra precautions. And did you ask your doctor about why you were still taking precautions? I understand your white count was at a fairly good level. You know, what was that about?

Steve Buechler:

That's right. And the counts had actually been good for many weeks. And so, I guess by day 100, I was getting a little restless and feeling a little frisky, and wanting to start doing things, especially now that we were tapering the anti-rejection medication. To me, that meant I was well on the path toward recovery, and why can't I resume all the things I wanted to resume? And it so happened that the question I was asking was the sort of research specialty of my oncologist. So she went very technical on me.

This is my layman's interpretation, but basically what she said is, "It's true, you have sufficient white blood cells, you have sufficient neutrophils, you have the kinds of things we want to see in a healthy immune system. But the anti-rejection medication that you're still taking, even though you're tapering, in effect, keeps those disease fighters and infection fighters from fully activating. And we want that because don't want them to attack your body. But the side effect is, you don't have the protection that it looks like you have, based on your white blood cell count. You're still really quite vulnerable."

She even said, because I had a cord blood transplant. She said, "I feel a little bit like the mother to your transplant, to your transplant baby. And I want to protect that baby as much as possible. So even though your counts are good, it's like, you'd be firing blanks if you had an infection. So keep wearing the mask, keep avoiding crowds," all the standard things they tell you.

And at least, with that explanation, I could corral my restlessness and say, "Okay, now I understand." And for me, that's always a big thing. If I can understand it, I can live with it. So again, more patience, and more, "Just follow the doctor's orders." She certainly knows what she's doing and she's taken great care of me up until then. So yeah.

Esther Schorr:

Yeah. So you were, but you were still taking, you were tapering, but still taking the anti-rejection medicine. Does it, did it still continue to have any kind of side effects?

Steve Buechler:

You know, I think, if anything, the side effects were becoming more evident, because I think maybe it was a cumulative thing. So even though we were tapering down the drug, I'd been on it for so long, that there were a number of things. And they were all, I will emphasize, they were all minor, compared to some of the more serious complications. But one of the providers I saw said, "Yeah, that Cyclosporine is a really nasty drug."

 And for me, that translated into, I actually made a list here. I experienced from that drug, I experienced the flushing, maybe sort of hot flashes, but how would I know? Hypertension, nausea, altered kidney function, neuropathy in my feet, weight loss, leg cramps, sinus irritation, abdominal swelling, and night sweats.

Esther Schorr:

So you were happy to be tapering off that?

Steve Buechler:

Exactly, yeah.

Esther Schorr:

Got it, got it.

Steve Buechler:

Yeah. Those are the less serious ones, but they were, again, because the cumulative buildup of the drug, they were just becoming more and more evident. So I was, yeah, when the time came, I was happy to leave them behind. I took some blood pressure medication for a couple of weeks. It made my feet swell. They said, "stop it." So there wasn't a lot to do with that stuff, except just write it out.

Esther Schorr:

Yeah.

Steve Buechler:

And as I was doing that, the cytomegalovirus flared up again. And so we did the same thing with the antiviral medication and knocked it back down. So that's just par for the course when your immune system is still compromised.

Esther Schorr:

All right. But you got to a point when your new immune system and you were back out in the world. Did your doctor give you some advice about anything that you needed to do, now that you're sort of cleared for takeoff?

Steve Buechler:

For the end of this period. We're getting up now toward day 180. Yeah. At that point, she was essentially saying, "You're pretty clear to return to all of your desired and regular activities."

The one major exception they carved out was, avoid any fungal sources of infection. So going into the yard work, turning over soil, maybe even having plants. At one point, I even heard eating raw mushrooms could precipitate a fungal infection when you still have a bit of reduced immunity. And apparently they're both easy to contract, and hard to eradicate.

So that was the one prohibition that extended throughout the whole first a year, all the way to the end of, all the way to my first-year anniversary in October. In fact, I remember meeting with her one year after transplant, and she said, "Well, now, you're further along in the story, now you can even go and do yard work." Unfortunately, that morning, the kid we'd hired in the neighborhood to cut my lawn had just put the lawn to bed for the year. So I timed that just perfectly, because I don't like to do yard work, so...

Esther Schorr:

Do you still eat mushrooms, though?

Steve Buechler:

Well, I'm back on eating mushrooms, yeah, absolutely. Yeah, yeah.

Esther Schorr:

So you've passed this humongous milestone. And so, were there anymore surprises?

Steve Buechler:

Well, it felt like there were some loose ends to deal with, because I'd been seeing oncologists and people dealing with the direct effects of the cancer, but it seemed like now it was time to go and see a dermatologist, because I'm at greater risk for skin cancer as a result of the, both the disease and the treatment.

And so, sure enough, I went to a dermatologist and they said, "Well, I want to biopsy something there on your upper arm. It looks a little suspicious to me." And the word came back. It was a basal cell carcinoma, which is the least, least threatening kind of skin cancer. So she excised it. But I now see her every six months for body skin checks, because I am more prone to skin cancer as a side effect, a long term side effect of what I've been through.

I also returned to an ophthalmologist, because way back between induction and transplant, I was diagnosed with some retinal hemorrhaging and what they call, were they cotton wool spots or something, in my ... Not, didn't affect my vision, but they were seeing things that weren't right in my eyes. And they said, "That's probably due to the leukemia."

When I went back to visit in this time period, they looked, checked everything out, and I said, "That's all resolved. There's no hemorrhage. There's no cotton wool spots. It's all better, because he got rid of the leukemia."

So these are some of the other side effects of both the disease and the treatment. So it was good to get those things clarified, and realize they were all coming back online, so to speak, and returning to normal.

Esther Schorr:

Right. So next big milestone, day 180. So at that point, you had your six month biopsy. So what were the results?

Steve Buechler:

The results, once again, were good. They confirmed a full engraftment, and found no residual disease. And this is probably the seventh or eighth biopsy overall. And all but one were actually pretty good. The first one diagnosed the leukemia, and after that, they were confirming that we were on the road to successfully treating it.

But I will say this was the point. This is six months post-transplant, when it just felt qualitatively different for me, like I was really able to accept the fact that I really believe I'm better, and I've gotten better, and this is going to be long lasting, and I'm no longer a patient, I'm a survivor, someone who's in recovery. We need to do continuous monitoring and things like that. But there was a burden that I wasn't even fully aware of, just was lifted, and I observed-

Esther Schorr:

It's like a psychological shift, yeah?

Steve Buechler:

Absolutely. And as I was writing about it, I tried to figure out how to characterize it, and the awkward phrase I came up with was, "It was a serene euphoria." That is to say, it was almost magically good, but very calm, considered, comfortable sort of way.

It was just the oddest positive sensation I think I've ever felt, but it was just a recognition of how much danger I had been in with this disease, which I didn't fully appreciate, when I was treated in the beginning. It was sort of interesting. My doctors never really told me how scary this disease is, and I never asked.

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.

 


Recommended Programs:

View next