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A Stem Cell Transplant Story Part 3: Signs of Progress

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Published on July 23, 2020

AML Patient Regains Independence After Transplant

Acute myeloid leukemia (AML) survivor Steve Buechler shares his stem cell transplant story with Patient Power Co-Founder Esther Schorr. In Part 3 of this series, Steve recounts his experience reaching the Day 100 benchmark after transplant. Steve moved from feeling like a patient to getting back to "normal." He describes the psychological boost of relying on care partners less. He details how the reduction of medication allowed him to regain his independence. Steve discusses some challenges, side effects and precautions that he took during his AML recovery and follow-up care.
 

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Transcript | A Stem Cell Transplant Story Part 3: Signs of Progress

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.

Esther Schorr:

Welcome. This is Esther Schorr with Patient Power, and I'm glad to have you join us today for a very special discussion with a very special patient and survivor. So I'd like to now introduce Steve Buechler. Welcome, Steve.

Steve Buechler:

Thank you.

Esther Schorr:

Good to have you here. So Steve, was the second month after transplant the same as month one?

 

 Steve Buechler:

There was some gradual improvement. There were some new events, there was some variety, but I would say that first month at home, that 30 days that we discussed in the previous segment was probably the most challenging. But the nature of the challenges just sort of shifted around a little bit in this next period that we're talking about coming up to day 100.

Esther Schorr:

Okay. So I know that there's probably some change in just the routine of being checked on as you get farther out from transplant. Did the number of times you had to go into the doctor change? Did you have different blood tests that had to be done at different periods? Can you talk a little bit about that?

Steve Buechler:

Sure, yeah. The clinic visits at this point, we're down to about once a week and then they got even less frequent through this period, so that was helpful. The bone aches that I reported earlier, they were gone. The nausea had improved. The fatigue was getting better. I could feel my energy and activity levels were slowly coming back up. I was able to reduce some of the medications that I'd been on. When they sent me home from the hospital, I had a pill box – it the size of a small Buick. It was just enormous. I was taking 20 different pills a day and the pill box had seven days across the top and four times a day down the side. And I had to take pills at so many different times of the day. I had to turn the thing sideways.

So I had four days across the top, but like six or seven different times during the day, or I put it in pills before breakfast, after breakfast, with meals, repeat this pill. It was almost like occupational therapy just to organize my pill box and remember to take them all, which I appreciated. And my caregivers helped a bit with that. So being able to reduce and eliminate some of those medications was very welcome. I had some minor side effects. I had some rashes. I had some dry eyes, some sinus headaches. At one of my clinic visits, I asked the provider, "Now is this rash, is this a sign of GVHD, graft versus host disease?" They almost chuckled and said, "No," in fact they said, "That's so minor. Don't even worry about it. If you have a graph versus host disease rash, you're going to know it, it's going to be presenting all over your body." So, okay. That works for me.

Esther Schorr:

So you were still on some medications though. Was there continuing to be any side effects from the medication? When did you get to start to drive and things like that?

Steve Buechler:

Yeah, there was only one medication that really caused a very predictable, nasty side effect. And boy, I'm going to forget maybe, it was called voriconazole (Vfend and Vfend IV), which I think is an antifungal medication. I had antifungal and antibiotic and antiviral medications and anti-rejection medications, but this one had a warning label, I don't think I'd ever seen it, basically said "This drug will," not may, "will cause blurry vision, black and white lines," and all these kinds of things.

Esther Schorr:

Oh no.

Steve Buechler:

And the first time I took it, it was quite severe. And my body acclimated to it over time. But what made that interesting to calculate is after week five, I ran out of my live-in caregivers. They had to go back to their lives in Wisconsin. I was supposed to have caregivers for the whole 100 days. It just wasn't possible to pull that off. So for a couple of weeks with clinic visits, it was catch as catch can. I called on my sister-in-law, who lives in the Twin Cities, I called on a colleague from work, I hit up a neighbor one day for a ride to the clinic, but it just wasn't possible to sustain the two rules, have a caregiver with you at all times, and no driving for the first 100 days.

Esther Schorr:

So what did you do?

Steve Buechler:

I drove. I realized, about that-

Esther Schorr:

Okay. And how did that go?

Steve Buechler:

I realized about day 60, I know how my medications are affecting me, and which ones will cause these side effects. I'm otherwise feeling pretty good. I made some very short drives, like to the neighborhood grocery store, to another medical appointment, and realized, "This is going fine. I can hop on the freeway and drive downtown for my clinic visits." Psychologically, it felt incredibly liberating.

Esther Schorr:

I was going to ask you about that.

Steve Buechler:

Just to be in charge of my life, in the sense that I could drive a car, I could go here, I could go there. And at one of my visits, somehow, the issue of how I got to clinic came up. And I confessed to my oncologist that I was driving. And she kind of rolled her eyes and said, "I didn't hear that."

So she was reinforcing the point that I shouldn't be doing that, but they have to understand, there's only so much you can do. The caregiver thing is a huge challenge for a lot of people. And I managed it as best I could, but this was the point where I kind of became my own caregiver. And so, I would go down to my appointment. I would come home. Then I would take the drug that blurred my vision, because I knew I was home safe for the day, so ...

Esther Schorr:

Well, maybe that's the kind of thing that Uber's come in handy, for some people these days.

Steve Buechler:

Could be.

Esther Schorr:

But not during COVID, but-

Steve Buechler:

Yeah.

Esther Schorr:

But right, so that would be a big challenge, so. But I think it's interesting that the flip side of that, and you shared it was, that that reinforced how wonderful it is to feel that sense of independence, and not depending on other people. That's significant. So I know there was a, the next really big milestone had to do with a change in the equipment that was needed to deliver medication to you. Can you talk a little bit about that?

Steve Buechler:

Sure. Going way back to the beginning, my first hospital, I think the second morning of my first hospitalization, they said, "We're going to take you down for a little minor surgery." "What? What minor surgery are we doing?" "Well, we're going to give you some fentanyl, and we're going to poke a hole in your chest, and that's going to allow us to install," they didn't say "install," but that's my word, "install what's called a central line, which lots of cancer patients have."

And it really facilitates all kinds of things coming in, chemotherapy for one, other kinds of medications. At one point, I think probably had five or six different medications on my IV pole, the tree that you have, where the bags hang? And so, there were six or seven different lines, of blending into two lines, that then went into this central port in my chest. And that's how they got the medications in. That's also how they got the blood draws out. And I can't imagine what it'd be like to go through all this, with punctures for every blood draw, and every infusion or transfusion. It just wouldn't be tenable. So this is a great invention.

Esther Schorr:

Right.

Steve Buechler:

And so, that was with me from June to, I think we're up to about January now. And on one of my visits, my transplant oncologist said, "I think maybe it's time to get rid of that," because there is a risk that it can get infected. And in fact, the nurses clean it very carefully when they administer things. And we were taught how to clean it at home, to make sure that you minimize the risk of infection.

Esther Schorr:

Well, was this like losing a friend? Or a sign of something good?

Steve Buechler:

It was time for this relationship to end, let's put it that way.

Esther Schorr:

Got it.

Steve Buechler:

It had done its job. And once I realized, you know, I'm only getting weekly blood draws, I'm not needing it, basically. And that's really what she was saying. So that was kind of a symbolic sign of progress.

One of the nice things about it is that, for this six or seven months or whatever it was, if I wanted to take a shower, I had to protect this thing. So I was basically getting like Saran Wrap, and wrapping up my upper torso, to cover it completely with plastic, so it didn't get wet, which could be a source of infection.

So frankly, that was a pain, it was a pain in the chest to do that. So to be able to take a shower and not have to worry about getting this thing wet, and getting it infected, another liberating sign. Another step that I'm moving away from the patient role and getting back to something that resembles kind of a normal life.

Esther Schorr:

Right, right. So I guess, then, you're coming up on that really big day for post-transplant, which I know is usually day 100, that's kind of a benchmark day. So maybe tell us a little bit about how that went for you.

Steve Buechler:

That was a big day. They did get another bone marrow that day, and I got the results within a couple days after that. And again, the bone marrow is as clean as could be. It was good news, continued good news. And my oncologist basically looked at the bone marrow biopsy, reviewed my blood counts, looked at all my other symptoms. And she simply said, "At this point, I can say your recovery is really as good as it gets."

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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