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Brad and Josie - Cancer Treatment Complications Part 2

• Brad Buchanan and G [Josie] van Londen • Season 1 • Episode 8

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Could you endure the excruciating pain of cancer therapy complications and still find gratitude in the experience? Join us as Brad shares his gripping story of survival following a stem cell transplant in early 2016. Brad takes us through the agonizing process of total body irradiation, chemotherapy, and the harrowing reality of developing severe acute graft-versus-host disease (GVHD). His gut-wrenching account of intense pain, temporary blindness, and gastrointestinal distress, coupled with the initial misdiagnosis by his medical team, gives us a raw glimpse into the grueling battle he faced. 

Through Brad's narrative, we delve into the intricacies of managing a hostile immune system and the long-term effects of cancer treatment, such as bone health deterioration, sexual dysfunction, and difficulty swallowing. Brad's insights emphasize the importance of self-advocacy and informed decision-making within the medical landscape. Despite the overwhelming challenges, Brad's story is one of resilience and gratitude, highlighting his appreciation for the life-saving procedure and the crucial role of extracorporeal photophoresis (ECP) in his recovery. 

We also explore the emotional and relational toll of chronic illness as Brad candidly discusses the strain on his mental health and family dynamics. From managing severe health conditions while shouldering family responsibilities to the bittersweet reality of early retirement due to disability, Brad's journey sheds light on the profound impact of chronic illness on personal and professional life. 

The episode concludes with a heartfelt exchange between Brad and Josie, filled with mutual gratitude and reflections on resilience. It leaves listeners with a sense of hope and admiration for Brad’s extraordinary strength.




G van Londen:

Welcome everyone, and Brad, it's now your turn to describe your cancer therapy complications.

Brad Buchanan:

Yeah, yeah. Well, the complications started early. I guess we'll take up the narrative of me going in for my stem cell transplant in early 2016. So, yeah, I got total body irradiation and chemotherapy to get rid of all the traces that they could possibly find of my original cancer and to obliterate my immune system, and so that was the goal of the first part of that my stay in the hospital. The first part of that, my stay in the hospital and once my immune system was gone, I started to have weird things happening with my body. I had something called a C diff or Clostridium difficile, which is basically extremely yucky poop, and, you know, no one quite knew what was causing that, but anyway. So yeah, I had various sort of minor little annoyances that my body was producing up until the point where I received my brother's stem cells on January 11th of 2016. And they eventually became engrafted into my body, creating a whole new immune system, which was great.

Brad Buchanan:

However, in the process, I developed acute graft versus host disease that came upon me much more quickly than my medical team was anticipating and which, in fact, the doctor in charge of overseeing me in the hospital she did not believe that I actually had the graft versus host disease. Yet even though I knew enough to say hey, you know, my skin is, I've got this rash. My skin is also peeling, isn't this graft-versus-host disease? Because that's one of a couple of the symptoms that they tell you to watch out for. And she didn't think so For whatever reason. She was skeptical that it would hit me so soon. And then I started having really bad eye pain, which they thought was conjunctivitis. They really had no idea what was going on with my eyes at first. So there was a couple of days there where I was saying, gee, I think I have this GVHD you've been telling me about. And they were saying, well, I don't think so. And then all of a sudden, things got dramatically worse. My eye pain turned into straight-up blindness. What was happening was ocular graft-versus-host disease, which is unusual for it to happen so immediately. But anyway, ocular graft-versus-host disease had scratched up my corneas, so I was functionally blind. Meanwhile I also had acute gastrointestinal graft-versus-host disease. Basically, what happened with me was my entire epithelial layer, as they call it.

Brad Buchanan:

So that's, my skin, my corneas and my GI tract was kind of scorched, so to speak, by GVHD, and so I was very, very sick. I was in a lot of pain. I had what seemed like endless diarrhea. I was on the commode. It felt like 24-7 for weeks at a time I felt honestly like I was going to die there, just sitting on the commode waiting for the next river of grossness to pass through my body. I couldn't eat. I wouldn't eat.

Brad Buchanan:

For weeks they were feeding me through it's called TPN, total Parenteral nutrition so a tube that came in through my fort line into my body and, yeah, I was in horrendous, horrendous shape and at a certain point they told my wife that I probably wasn't going to survive. Something like nine out of 10 people don't survive Stage four, acute graft versus host disease of the type that I had. So, yeah, that was. That was the biggest and most difficult side effect. And acute graft versus host disease when it doesn't kill you, it morphs gradually, sort of with excruciating slowness, into chronic graft versus host disease. After 100 days they say your acute GVHD symptoms go away. And to some extent they did. They got a lot better. They did, they got a lot better.

Brad Buchanan:

What was going on was that the doses of prednisone that I was on and the other immune suppressant medication called tacrolimus, they decided to try something different.

Brad Buchanan:

They pitched it to me as a somewhat experimental treatment called the ECP or extracorporeal photophoresis, where they sort of they took my blood and cycled it through a machine, exposed it to light that's the photo and photophoresis and a chemical called soralin and they gave it back to me and the idea was to sort of tamp down or control the very angry T cells in my new immune system that was attacking the rest of my body.

Brad Buchanan:

So graft-versus-host disease basically means that you're grafted, in other words a new immune system that had been grafted into my body. So graft versus host disease basically means that your graft, in other words the new immune system that had been grafted into my body, was attacking the host, ie the rest of my body, as though it were an enemy to be destroyed. So this was a really difficult and hard to kind of get our minds around phenomenon whereby the thing that was going to cure me of my cancer was also threatening to kill me. And yeah, so that was the biggest side effect that you know and complication, I guess, that I endured from the transplant procedure and it took a long time for the photophoresis treatments to get any kind of semblance of control over my disease and I spent, I think, 139 days total in the hospital use total in the hospital.

Brad Buchanan:

I had gotten, you know, maybe a month's worth of ECP treatments. That made them feel like I was okay to be sent home to recover, but with the proviso that I was not to be left alone unsupervised. I needed 24-7 observation supervision from somebody, which was difficult, I would say, for my wife Kate to get her mind around that, because we had two daughters who at that point were, I think, 11 and 7 years old, so they needed parenting. So we ended up hiring two caregivers one to come in during the day and sort of observe me and help with anything they needed doing, and then at night to sit in the basement with me, basically while I tried to get some sleep. All the while I was hooked up to that TPN nutrition system because I wasn't eating enough, because I was very aware that anything I ate or drank would come rocketing out the other end with a vengeance, and so that diminishes your appetite pretty significantly. And I, at one point, the doctor who suggested that I started an ECP also gave me a pep talk and said you know, if you don't learn how to eat again, you're not going to make it. You know, eventually you're going to have to start taking in nutrition through your mouth and trusting that your body will eventually get used to processing food and deriving nourishment from it in a way that it hasn't been doing for the past month or so. So, yeah, that was the worst of it and you know it's funny because they almost sent me home just before that acute graft-versus-roast disease really kicked in. They were preparing to discharge me, which is kind of shocking to remember because I don't know what would have happened if I'd been at home when that acute GVHD came upon me. I suspect I would have died if I hadn't been, you know, very quickly readmitted and hooked up to the IV and so forth. So yeah, I feel like I narrowly escaped death in a couple of ways during that.

Brad Buchanan:

During that period, when, you know, cancer was no longer my grave, a grave concern. It was this new, it was a cure for cancer, basically the, the promise of being cancer-free, chained with this whole new monster to deal with. That was now a part of me, it was encoded into my own DNA. This disease graft-versus-host disease was basically now who I was genetically speaking, as I wrote in a poem later. One part of me does not like the others, and that part of me is my immune system. The most important element in your viability as an organism is your immune system, I would say. And that immune system was really angry, it felt like, and it took a long time to get it under control to the extent where I felt like I was going to be able to make it and recover properly. But that took months and months and months.

G van Londen:

Are you still on prednisone Brent?

Brad Buchanan:

No, I'm glad to say that I, after multiple gradual attempts to reduce the dosage and get off it completely, I stopped taking prednisone in the fall of 2019, in a way, just in time for the pandemic to hit.

G van Londen:

Yeah, so that's good for your bone health too, because your bones have some intrinsic capability to regrow. There's many things that I could choose to zoom in on. One of the things that I wonder, if I am allowed to ask, is if you knew in advance that this is what was going to happen, would you do it again? Would you you say, yes, put me through the stem cell transplant? That's, I think, a very hard question to answer, because the alternative would have been a guaranteed death.

Brad Buchanan:

yeah, uh, I, I would like to believe that I would do it again. Yeah, um, and I've thought about it a lot and you know I would say, not only would I do it again, I would probably do it at the same institution that I had, even though that method of transplantation was different than the one that was on offer at the other place where I got my second opinion, where they did a much different approach. They basically did not give you total body irradiation and not this sort of same systemic chemotherapy. They let your new immune system from your donor gradually take over from your old immune system.

Brad Buchanan:

But I didn't really trust that that approach would work for me, and the thing I've always feared most is a return of my original cancer, because I know that that was going to kill me. You know, there was tangible evidence as soon as I started coughing up blood from my lung. That was an obvious sign that, oh yeah, this cancer is a nasty one and I would absolutely get a stem cell transplant again at the same institution with the same donor. It's really hard to think about how things would have been different if I'd made a different choice, because at no point was I really conflicted about the decision of where to do my transplant. Also, I would have had to live in the Bay Area, hours away from my family, for many months to do that alternative transplant that I was just talking about, and that was never really a viable option.

G van Londen:

Yeah.

Brad Buchanan:

Yeah, I don't have any serious regrets about the procedure I chose. However, you know, I do feel like I could have been educated more fully about the side effects graft-versus-host disease. I think I did as much advocacy on my own behalf as I could have done, but my doctor was skeptical. She was actually the person who started the stem cell transplant program at my home hospital, so she thought she'd seen everything you know and she had to some extent, until something new popped up me and my weird disease and my weird body. That you know she didn't, she didn't fully understand at the time. And there were also side effects that they they did not really discuss with me. I did. I did buy books of like here's what a stem cell transplant is going to look like, you know, and here's some of the things that could happen. But you know, there are so many possible side effects for a stem cell transplant that it's almost impossible to cover everything with the proper emphasis. I will say there are a few things that you know I eventually had to contend with that I would have probably benefited from more warning about. One was the sexual dysfunction that ensued from total body irradiation and you know, basically after my transplant I was so badly incapacitated that I didn't really care what was going on with me with respect to my sexual health. But when I finally kind of like started to think about it again, some ways I expected to to resume sexual functioning as I had done before, and that was not. That was not easy. I did have basically a version of what we would call erectile dysfunction, where I could get but not sustain an erection, and that took me a lot longer to figure out than it should have done. And if I'd had more warning or maybe more education about that, I could have anticipated it and spared myself and my wife some awkward moments and frustration. But yeah, eventually, you know, I just got the proper medication that was prescribed and you know that problem disappeared with the, you know, with the passing of time. But yeah, it was certainly a side effect they didn't warn me about, specifically to do with the radiation.

Brad Buchanan:

And then another side effect there are so many possible side effects of chronic graft-versus-host disease, but one of them that was not on my radar at all was I started having a lot of trouble swallowing. Again, this was just before the pandemic hit. So we're more than three years out from my stem cell transplant. But one of the symptoms of chronic graft-versus-host disease is that your esophagus can start to get constricted. And I was having very frightening choking episodes, first on my pills, that I had to swallow dozens of pills every day and at a certain point they started sticking in my esophagus and nothing is quite as awful and frightening as having a pill stuck that simply won't go down or come up. Yeah, you're going to choke right there and die.

Brad Buchanan:

And so I had, you know, a few weeks worth of uncertainty about what's going on here. No one talked to me about it. Of uncertainty about what's going on here, no one talked to me about it. The first healthcare provider you know I I went and saw was like oh no, no, that's, that's not graft versus host disease. You know he might have acid reflux or something like that, but the fact is that that he didn't know the first thing about graft versus host disease, but he'd never seen it before, so he discounted it as a possible reason for the choking episodes.

Brad Buchanan:

Well, turns out, you know, I did my own research, as I often had to do, and I found out yeah, this is one of the known symptoms of chronic graft-versus-nose disease. And so I went back and insisted and saw an ear, nose and throat doctor who said, yes, you're right, it's, it's probably GVHD and there's a, there's a fix. We can send a, put a little like balloon into your throat and re-enlarge that part of your esophagus. So again, I got that treatment just before the pandemic hit, so that my swallowing problems are mostly behind me, I would say. But you know, there are so many possible complications when you're messing with someone's genetic identity their very DNA is altered in a stem cell transplant, as mine was it's almost impossible to wrap your mind around all the things that could go wrong.

Brad Buchanan:

And I ended up writing a whole book about my experience with graft-versus-host disease and giving some information that people should know before they have a transplant or before someone that they know or love goes in for a transplant, that there are so many things that can happen as a result of this genetic transformation that we undergo in this procedure. I had my top five things to know about acute graft-versus-host disease and my top five things to know about chronic graft-versus-host disease. Graft-versus-host disease and my top five things to know about chronic graft-versus-host disease. But there are so many other things that come into it as well. I will say that I kind of got off easy to some extent on the sexual side effects of GVHD. Some men, but a lot more women, have serious problems with skin irritation or dryness and so forth after a stem cell transplant as well.

Brad Buchanan:

It can be a real challenge to overcome all those things, and those are the kinds of things that people don't like to talk about. I was even warned against writing my book about GVHD by my oncologist, who I respect greatly, but I had to differ with him on this score. He thought my book would frighten people away from getting their life saving transplants. But as I said to you and as I say in the book repeatedly, I would still do what I did, knowing what I know. But yeah, I was only in my book. I kind of gave my experiences and then shared information. But there's so many other you know things that we're just discovering now about how we can better maybe prepare people physiologically for the transplant as well as managing their GDHD if it crops up. But I see you have questions coming so I'll stop.

G van Londen:

Yeah, I have a whole list that I wrote down so I don't forget. So let me say a few things. One is the side effects we've listed here are just a limited list. Both of us experience more than we can remember right now or we think is important to share right now.

G van Londen:

I think one of the themes that popped up today both in my story and your story, Brad is to summarize today's session thus far is being your own advocate. You know your body best, you know what's happening and hopefully you will find a. You have a provider who has an open mind, who doesn't stick you in boxes but listens to you and applies the art of medicine to think through what is going on here and doesn't just stick you in a box and assume that that is it and move on to the next patient, which, sadly, because of a shortage of time and the need to be efficient, often doesn't allow a lot of room for a provider to sit down with you and listen to you. They're supposed to diagnose you quickly, treat you quickly and move on. But we're dealing with real patients here who, in particular, in terms of Brad and myself, we have very unique, complicated situations, and there's many more complicated patients out there who often can present in very bizarre, unique ways, and so they deserve a little bit of extra time.

G van Londen:

The other thing that you mentioned which is interesting is the informed consent or, as my late mentor used to say, informed conversation when you go to large national society meetings.

G van Londen:

One thing that was discussed at one point is whether brain fog should be mentioned as a side effect of cancer treatment, and many cancer providers decided against it, because the more you tell patients what may happen, the less they're inclined to go through the treatment, or the harder informed consenting will be, because you have to persuade them more. I guess I understand where they're coming from. I still think an informed conversation where sometimes you may need to spend several visits with them if the time allows, if cancer treatment can wait, where you tell them what will be expected, what is going to happen, I think is the ideal way to go, Although at the end of the day it's hard to anticipate everything that can happen, and you went into it blindly, both figuratively and literally. That's really amazing how you had that scary experience of a a total vision loss. It's already hard enough being in the situation you were in with all your senses, let alone if you you miss your vision well, I have total vision loss.

Brad Buchanan:

Weirdly enough, I had like slivers of usable vision at the very peripheral edges of my eyesight so that I could I could tell whether it was light or dark outside. But my corneas were scratched up like in the middle of my eye. If you held like two fingers in front of my face, I couldn't tell you how many figures there were. But if you know, if I wanted to see something, I would sort of I would sort of turn my head away from you to look from the corner of my eye to see what I could. So yeah, there was some usable vision, but you know I couldn't drive. But I walked around the city. Once I figured out how to use my white cane and recovered enough energy, I did. But I was going to also talk about, or ask you about, whether you had any cognitive effects or side effects of treatment, because I certainly did, or side effects of treatment, because I certainly did that you know they would come in and give me quizzes about you know how I would react if I came home and found the front door wide open and I didn't. I didn't give the answer that they wanted, I guess.

Brad Buchanan:

But yeah, I had a lot of cognitive short term, I think, cognitive challenges. I was also on a lot of pain medications which produced weird hallucinations and horrible nightmares. At one point I was also taking two medications that kind of clashed in my particular organism. So I had what I now think of is almost like a schizophrenic break where my brain was having this hyper active conversation with itself. That lasted for a few hours and was maybe the most terrifying period of my entire treatment, where I thought I was truly losing it, treatment where I thought I was truly losing it and I finally, you know, got a nurse in to say, hey, I'm, I'm having a like a almost a schizoid episode here. We need to change my drug regime because two, two drugs were were not agreeing with each other and you're producing this horrible agreeing with each other and you're producing this horrible, nasty side effect in me, and so, anyway, did you have any cognitive issues?

Brad Buchanan:

of side effect.

G van Londen:

I did not have that much when I went through all my cancer treatments, except the routine stopped postoperatively and things like that. When I went through the menopause it definitely affected my brain function, as it does with every menopausal person. I guess I could still function, but I know that it wasn't as sharp and as quick as it was before, that it wasn't as sharp and as quick as it was before. Now, with my mitochondrial disease, my brain is definitely less, much less quick, much less memory focus to the point that now there's a reason I'm disabled at this point. But I know that some individuals on the cancer treatments have their brain fog be so terrible that it results in their inability to participate in their family or society, their work and some of my patients were even demoted for that reason. Their brain function was really deeply and in a prolonged manner affected.

Brad Buchanan:

Yeah.

G van Londen:

But luckily I was spared from that then. But now my mitochondrial disease is doing a big, big number on it, which is a little bit sad, I was going to say it's the same with your vision, because my brain sad, I was going to say is the same with your vision, because my brain, physically I was always very clumsy and, you know, not very strong, but my brain was my Speedy Gonzalez, you know. It compensated for and that is now a little less and same with you. Your reading, your writing was your passion, your hobby, your work, your everything. But then when you lost your vision, you lost that. I'm glad you're regaining some of that, because the world needs more of you.

G van Londen:

Brett Thank you there is for brain fog.

G van Londen:

for most individuals it's a temporary setback when it relates to cancer and cancer treatments, and it's only the small percentage of people in which it is permanent and really disabling. So we don't want to scare people. It's something that you should know about, as we mentioned before. It's something that you should know about, as we mentioned before. If you know about it, you can recognize it earlier, but it's very rare for things affecting you long term. There was another thing, brad, that I wanted to ask you, but we can delete it if you wanted to. I think one thing you didn't mention and maybe he did that with purpose is a big, big loss you experienced, and that is the loss of your marriage. I don't know how comfortable you feel talking about that, or if you should reserve it or delete it.

Brad Buchanan:

Well, I'm happy to talk about it. I don't know that it was a direct result of cancer and the treatments. I think it was a complex group of factors. Our marriage lasted for 25 years, the last nine of which were eaten up with worries about my health, and you know, that did become a big factor, I think, you know, in the deterioration of our partnership. But you know, I think that there are a lot of factors that can lead to people just growing apart and the dynamic in the relationship changed. You know, and wasn't really.

Brad Buchanan:

You know, I was never going to be able to go back to the person that I was before I had cancer. You know, I am, I am technically disabled. I am, you know, I'm, I'm. I speak much more slowly than I used to. I don't, yeah, I'm, I'm not up for going on hikes or doing a lot of outdoor activities, which my former wife still enjoys very much.

Brad Buchanan:

My lifestyle is just radically altered and, yeah, so I think, you know, we both felt at a certain point that we were just living different lives separately, in a way under the same roof, and that wasn't ultimately going to be conducive to a lot of happiness and togetherness. So, you know, things are always very complicated in a long-term relationship, especially when there are kids involved. And you know, I think both of our main concern in all of the marital problems was you know, how do the kids manage to keep their lives going with parents who are not really getting along very well? And ultimately we felt like it would be more honest for them and for ourselves to say, yeah, we're, we're, we're separating. And you know, I think the kids have done really well with all of it and are thriving, honestly, and I think they both see that we spells of illness and a near-death experience played a role.

Brad Buchanan:

Yeah, of course, but it's very hard to pinpoint exactly what was the straw that broke the camel's back. You know there are a lot of straws and you know who knows exactly. There are a lot of straws and you know who knows exactly. But yeah, I mean, I know you've you've talked to Kate, interviewed Kate. I think she spoke to this topic too. I'm not sure I have a ton to add to what she said and what I'm kind of echoing here.

G van Londen:

No, no, no, I wasn't trying to. I guess what I was trying to relay is that any illness, for that matter, changes the dynamic of a partnership and that can result in different outcomes for different people. It definitely strained our relationship for quite a while. Yeah, one of the things I was thinking whether I should share is, for a long time it kept being HPV positive and so it has to come from somewhere, and so I thought for a really long time that maybe my husband was unfaithful and he was continuing to bring it home. But he wasn't. This was just me being unable to fight the infection, and so there was a lot of stress trying to juggle work or health, child work, our health child. My husband has a health condition, and then me on top of that.

Brad Buchanan:

So, yeah, lots of stress, yeah, I mean, I think you know the things that Kate and I went through would probably end 99.9% of of of marriages with one thing and another. But you know, I I think what we've always done is is been really honest with each other about where we were at. Yeah, I think that in the end, um, we felt that to keep that honesty, um, we had to tell our kids what was going on, and and and and, and, ultimately, um to separate. But, uh, but yeah, we, we had thought, just getting to the transplant, after all the ups and downs of my initial cancer treatments and you know the, the frightening episode of coughing out blood and getting rushed to the ER and navigating that summer of chemotherapy and getting the transplant lined up, navigating that summer of chemotherapy and getting the transplant lined up, after I had initially thought I was going to get the autologous transplant but the pivoting to the allogeneic transplant where I needed a donor. We found a donor. It was my brother and he came and donated and we thought we hit the finish lines when we got to the transplant phase and it was so far from being the finish line that you know we cope with all the fallouts from the different, the different things that were happening to me. All I had to do was sit there and and be the patient, but she had to make everything else in our lives finances, child care, know, just everything else was falling onto her lap, as well as having to be my you know caregiver and advocate when I was too sick or too nauseated or just incapacitated to to speak up for myself. You know, up for myself, you know. So, in a way, all I'm left with is a gratitude to her for having gotten me through the worst of my medical problems and into a place where, you know, I felt comfortable enough, that I was medically stable to survive, you know, on my own, on my own, and you know I'm grateful that I got to that place where I was independent enough that I could be my own caregiver and advocate and so forth, and still, you know, be there for our daughters and so forth, I mean.

Brad Buchanan:

Another side effect of all my treatments, though, was that I had to retire early from my job, a job that I do miss in a lot of ways, but I was just too sick. I was either going to have to go back to teaching at least half time or risk losing my benefits if I didn't. And the third option that I chose was to declare early disability retirement, which I did. It was a very easy choice to make. I was lucky to have that choice, so that I have a pension and so forth. So, yeah, that was the other side effect. I was lucky to have that choice so that I have a pension and so forth. So, yeah, that was the other side effect. My career was the other casualty of the cancer treatments and protracted illness that ensued. But, yeah, I was lucky not to have to, not to be forced to go back to work when I was still really sick or and now, when I'm disabled, you know. So I I'm pretty fortunate in a lot of respects yeah, yeah, no, you're right, I lost my career too.

G van Londen:

I forgot that part. Yeah, it's interesting, isn't it, how we forget things.

Brad Buchanan:

Yeah, well, yeah, I mean, I started thinking of my. You know the hospital was my new job in a way. You know that was. That was the place where I spent the most time and had obligations, and it was even hard to stop going there. Often I'd be biking or walking around my neighborhood, which is close to the hospital I was treated at, and almost be nostalgic for the hospital and the support that I got there. It was a place where I felt safe. Even though some of my treatments were difficult, I had people there that were really passionately devoted to helping me survive them and in some ways it was hard to make the transition back to everyday life. You know where I was on my own. You know to to monitor my my symptoms and report back is.

Brad Buchanan:

Another effect of my transplant was I was pretty badly immune compromised still, and so well. The most sort of problematic symptom of that was I developed a second cancer, and the problematic symptom of that was I developed a second cancer, a B-cell lymphoma that was caused by the Epstein-Barr virus that reared its head because I was immune compromised. The Epstein-Barr virus is something a lot of people have in their bodies. It doesn't cause any damage, but when your immune system doesn't know how to fight it and neutralize it, it can generate a cancer that they initially thought was going to be terminal. For me, I didn't think I would be able to survive it for more than about a year. You know this was premature and I ended up getting into a clinical trial in New York, where, you know, I got on a plane, blind and still pretty sick, to go for three weeks at Memorial Sloan Kettering where my parents joined me, and we actually had a great time. Oddly enough, not knowing whether I was going to make it gave us all a bit of a, you know, carte blanche to just go and eat at fun restaurants and drink the odd glass of wine and appreciate New York, you know, in a way like what the hell? What have we got to lose? Let's enjoy. If this is my last year of life, let's enjoy part of it together, anyway.

Brad Buchanan:

So yeah, my immune suppression left me vulnerable to pneumonia as well. The first few times I got sick after my transplant I'd get a head cold. I, you know I'd get a head cold. Ordinarily I'd be able to fight off, no problem, but it would put me in the hospital with double pneumonia. So I'd have to go back in and be hooked up to IVs and so forth and you know I would get so sick I could barely move. You know I couldn't climb up the stairs anymore anymore. And so, yeah, I definitely needed continued medical support and attention for the first three years, I guess, of my post-transplant life, because you know I was still getting photophoresis treatments. Only last summer did I finally say I'm done with photophoresis and had my port removed.

Brad Buchanan:

But yeah, I had more than a hundred photophoresis treatments which had their own side effects, although those were pretty minimal. Basically they made my eyes and my skin very sensitive to the sun and I actually developed a skin cancer on my neck that had to be surgically removed. I actually developed a skin cancer on my neck. It had to be surgically removed, I think in part because of my fragile skin, and photophoresis was part of that treatment regimen. That made my skin really paper thin and I bruise super easily. I get little cuts I don't even know where they came from, just kind of rendered my skin very fragile and permeable. But but again, this is like in the context of the bigger medical picture. You know, those minor side effects just kind of seem like nothing, nothing much. But yeah, my immune, compromised state after my transplant. That got me into some difficult positions. You know where the slightest thing could put me back in the hospital or could render me vulnerable to more cancer, you know.

G van Londen:

Yeah, I think we've had a very thorough conversation, although in the reality we can go on and on because there is more, but I think maybe for today this is enough. What do you think, Brad?

Brad Buchanan:

Yeah, well, you probably need to get your nap fairly soon, right?

G van Londen:

Yes, also that, for those of you who are listening, I'm in the East Coast area and Brad is on the West Coast area three hours behind on me, so I wish Brad a very good day. I'm going to take a little nap.

Brad Buchanan:

I'll probably take my nap three hours as well, okay.

G van Londen:

Well, thank you everybody for listening and thank you, brad, for talking and asking those good questions.

Brad Buchanan:

It's always my pleasure, Josie.

G van Londen:

Thank you, Brad.

People on this episode

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Josie

Host
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Brad Buchanan

Co-host