Two years ago today, I embarked on an odyssey that completely changed the trajectory of my life. I checked into Emory University Hospital’s Winship Cancer Institute, where I received the first of five days of intensive chemotherapy to destroy my bone marrow and to wipe out my immune system. 

Several days later, I received 13 million new stem cells from a German donor. 

In the spring of 2023 I developed VEXAS syndrome, a rare, incurable genetic mutation that caused a blood cancer called myleodysplastic syndrome. It caused a string of seemingly unconnected, yet awful health complications. I thought I was going to die.

The only permanent treatment for my disorder was for me to receive a stem cell transplant. That process consisted of a steady regimen of toxic chemicals to kill my existing bone marrow to destroy the genetic mutation. This created space for new stem cells where marrow is generated. My new stems cells moved on their target and set up shop producing new marrow.

The treatment used to save my life had a 63 percent survival rate.

I received a chemo called busulfan for five days. On the final day of the treatment I also received melphalin, another chemotherapy agent. They kicked my ass. My hair fell out, I was exhausted 24/7 and I didn’t have an appetite for nearly six months. 

My hair and appetite came back, as did my energy levels.

Repeated chimerism blood tests have shown that my blood cells are 100 percent comprised of my donor’s cells and zero are my original cells. The new stem cells took over and completely rebuilt my immune system.

VEXAS syndrome was only discovered in 2020, so there’s no long term empirical data showing whether or not the mutation will reemerge. That being said, there’s no evidence of the mutation that caused my illness remaining in my body. I continue to have my labs monitored and I am thankful for having reached this milestone. 

Coming back from a life threatening illness puts a lot of life’s issues into different perspective. When you rely on other people for survival, you realize how important those relationships mean. I have lots of people who helped pull me through this, and I’ll always cherish the love and support I received. Prolonging my life and protecting my health has become so much more important in my day-to-day. I make a more conscious effort to not obsess about things I can’t control. I can’t say I’m always successful, but I’m still a work in progress, and I’m conscious of what I should be doing.

Sunday was my birthday. Well, my other birthday. A year ago I got my new German stem cells. I can’t believe it’s been a year since the transfusion. There’s been sooooo much change I’ll give y’all a quick catch up and then we’ll move to more interesting topics. Did I get any birthday presents? A couple of margaritas and spending time with folks I love.

In late spring several things happened almost at once. My labs got better and better. Maggie, my NP took me off of the ProGraf and a number of my other medications. I got two of the three rounds of my early childhood medications (my new blood didn’t have very much immune protection.) I started walking in the mornings a couple of days a week with Vince and Tom. I was still 50 or so pounds down and looking like a cancer patient (I can say that because I WAS a cancer patient,) so I started working with a trainer at the gym twice a week. I still get the pinpricks on my skin when I’m warm and I still have some tremors in my left hand, but I can drink the hell out of coffee again. My energy came back about 90 percent and continues to improve.

My friend Molly offered me a job, so I started working in production finance at Adult Swim on Cartoon Network. Mark had some weird health stuff that stuck around for a bit in the summer. Someone t boned his Tesla, his brother died and we ended up in the ER one early Sunday morning. So it was kind of a crappy summer, but at least I felt well enough to help out. We got through it.

I’ve got my energy back, my ankle feels like nothing ever happened to it and I’m still down almost 50 pounds. I hardly ever think about all that happened last year. I don’t dwell on any of it anymore. There’s no point.

The last few months have been pretty great. The guy who framed the carriage house pulled up the gross blue carpeting on the stairs and upstairs and put down new flooring. I redid my office. We had a fun weekend in upstate New York. Mark and I celebrated our eleventh anniversary on a clipper in Casco Bay, eating lobster rolls and exploring the outdoors in Maine.

I’ve been incredibly lucky. 2023 was a huge challenge, but I think about it less and less. I still make movies in my head sometimes but that’s what XANAX is for. I’m full of hope and thoughts of the future again, which is nice.

It’s been a couple of months since I got my stem cell transplant and I am on the mend! I had another bone marrow biopsy and results show no VEXAS or MDS. Dr. Langston said she couldn’t ask for a smoother recovery. She reiterated that stem cell trsnsplant is one of the toughest treatments modern medicine does. She was actually smiling behind her mask-which I have never seen. I’ve gone from two Emory visits per week to once every other week. It feels great to progress so smoothly and it’s nice not having to drive out to Decatur once or twice a week. I’m healing.

I’m feeling okay. The GI stuff has cleared up (with the help of anti-nausea medication.) The ankle is almost healed but I’m still wearing a small brace when I go to bed. This stupid trembling of my hands sucks and it’s making typing, which I am not great at in the first place, harder. It takes me twice the time it ordinarily would. The tremors are from the ProGraf, which is my anti-rejection drug, so I’ll just have to deal. I’ve got this weird ear thing-my ears have been popping a lot. I went to an Ear, Nose and Throat specialist who told me there was nothing wrong. It’s lessening. Besides that I have the same aches everyone else my age does.

I have taken many naps. I haven’t had a lot of energy, but that’s slowly changing. I’m getting stronger. Concentrating on stuff is still a bit of a struggle. The chemo fog comes around from time to time but it’s decreasing. I’m driving. I have gone to the gym several times in the last few weeks. So, slowly getting back out into the world. Since I have a brand new immunity system I got a fu shot and the COVID shot. I understand I have to have all three COVID shots again. I am supposed to stay out of work for two or three months and I am itching to get back to it.

Thanks for taking the time to read this. My posts might seem sporadic but a fellow has to be in the right mood to write. If anything of note happens I’ll post about it.

It’s been a little more that three weeks since I got out of the hospital. For the first week or so I questioned Emory’s decision to let me out a week early. I was experiencing robust stomach and gastrointestinal pain. My head was still in chemo-fog and I developed a tremor in my hands. It’s annoying to type with shaky hands.

After two weeks at home the GI symptoms lessened dramatically. What stuck around is the chemo fog, hand tremors and something going on with my ear. The chemo fog is lifting more and more every day. Another weird side effect of the chemo (I guess) was talking in my sleep. Mark told me I had a whole conversation about Justin Bieber, old fashions and nonsensical phrases like “If you’ve seen one, you’ve seen a dozen.” Mark had a couple weeks off which he spent addressing any whim or outlandish request I made at the time. Michelle came in from North Carolina and is staying with us for a couple of weeks ostensibly to be my caregiver. We’ve been watching the train wreck holiday programming on Food Network. She’s gone to appointments with me, she’s keeping me on track to drink and eat enough and she’s been in charge of dinner for the most part.

Food is the continual bane of my existence. Most everything tastes like a sofa cushion or dry leaves. My peer counsellor Steve said it was two years post-transplant before his eating was back on track. Eating has been a struggle. I’m down forty pounds, and I can’t afford to lose any more weight.

The week that I checked into Emory I twisted my ankle on a bike ride. It hurt like hell and the pain six weeks in was almost as bad as when it was a fresh sprain. Mark scheduled an Xray to be done and it seems that I have been walking around for six weeks on a BROKEN DISTAL FIBULA. The day before during my regular appointment I told the Nurse Practitioner that I was having elevated temperatures at night. She ordered an additional culture to look for infection. Mark and I were heading to get my ankle scanned when I got a couple of calls from Emory to tell me that a culture came back positive and that I needed to be admitted again. I got the scan, after which we went to check me into the hospital. Once I got into the room, the nurse started an IV drip of Vancomycin. An hour or so later a PA comes in and tells me that the culture was read wrong (?)

I called Mark to have the PA explain the mix up. I was discharged from Emory right then. Of course, Mark had come home to pack a bag for me. He came to pick me up and had to endure the horrible traffic, reroutes and frenzied activity that came along with Mrs.Carter’s memorial service, which was happening at the church across the street from the hospital. It was a huge Pain in the ass.

In the end I was able to get in to see the orthopedist who sent me home with the Mercedes of boots. The boot really helps when I take my afternoon walks. I’m trying to get out and walk every day. I’m not nearly as tired as I was last week. So the phrase of the month, which I am getting a tattoo of at some point, is CAUTIOUSLY OPTIMISTIC.

Look, somehow I got let out of the hospital six days early. The Basement period was rough and I owe a huge debt to the care team that was assigned to me. I was actually a bit surprised and taken aback that I was getting released so quickly after over a week of feeling like hammered shit. I had been laid up moaning and burping but somehow from outward appearances had started feeling marginally better and my labs showed that my little German swimmers were doing their thing.

I moved into the engraftment period. My little German swimmers have found their way to my bone marrow, have set up shop, and are now creating white blood cells and platelets and generally doing what they’re supposed to with a flourish. Once again, I have many people to thank for my early breakout. To be able to breathe fresh air after being cooped up on the ninth floor for three weeks was liberating and made me very happy.

So, I’ve been at home since Saturday. I kind of feel off still but every day I seem to feel a little bit better. Post-transplant my symptoms have been GI related and some hand tremors. I still am not big on eating. Mark got me these Chai Tea Atkins Protein Shakes. I’ve had two so far and both times they came right back up. There will no longer be Atkins Protein Shakes in my future. I’ve been out walking short distances a couple of times (except yesterday-we shall not speak of yesterday) I know how therapeutic walking is, but I get so exhausted and my right ankle throbs like a motherfucker. Walking around in my neighborhood is so much better thank making loops of the ninth floor.

The amount of pills I have to swallow three times a day is ridiculous. When I was living in Murfreesboro and managing Dad’s medication, filling up his pill trays I felt overwhelmed sometimes. Mark is managing probably five times as many. I also have the central line in my chest, and once a day he has to flush the ports with Heparin, which is also a big pain in the ass. Heparin decreases the clotting ability of the blood and helps prevent clots forming in my blood vessels.

I’m not complaining. I’m thankful for so many things. I’m a lucky man.

The stem cell transplant was only the phase of this situation I have going on. I’ll be going back to Emory at least twice a week for I don’t know how long. The most crucial days are the first one hundred days. My immune system will be jumpstarted by then. But then in a year I will have to get every one of my childhood vaccinations, which will be a huge pain in the ass. Also, I’ll be getting a third bone marrow biopsy at some point. The drugs were so much better at Emory I didn’t feel a thing.

I am filled with gratitude for everyone who’s checked in on Mark and me, by texts, Facebook and phone calls. Y’all keep asking me if there’s anything we need and if you can do anything to help. We’re good for now. It means so much to Mark and me. Keep us in your thoughts.

I can’t recall what day it was when it happened. The chemo zapped me pretty hard, and I don’t really remember relevant dates. I think of my post chemo days in terms of good or bad things that happened on that particular day, like I can remember when Sloan and Dennis and Jen and Bun and Andi and John and Molly and DeVan popped by for visits. Similarly, I remember the incidents that occurred on bad days as well. Losing what was left of my hair was a bad day as I was also doing projectile vomiting every now and again.

I can’t say that I was chagrined or all that bummed out when my hair all fell out. I knew what was coming. I had Michael Sponsel at Freedom Barber Co. on the Beltline to buzz me down a few days before I checked in. I had a few days of walking around with a shiny pink dome in preparation.

One of those mornings post-chemo however I was horrified when I looked in the mirror and my moustache and beard were half missing. I could rub my chin and I’d end up with a bunch of hair in my hands. I went ahead and took off all my facial hair with a razor.

Hair loss due to chemotherapy can be pretty debilitating. For lots of people, a good head of hair is part of who they are. We spend tons of money on the right cut, the right color, highlights and lowlights and God knows what else. I get it-having a good head of hair tells the world you’re confident and robust and healthy. When I had Michael buzz me down I think I was mentally gearing myself up for the trauma I thought losing all my hair might cause. I have a decent looking head, and I usually wear baseball caps anyway. So I was sort of at peace with the idea. That being said, the facial hair loss was a kick in the teeth.

I look old.

Truthfully, I was more afraid of the mouth sores and the GI distress.

The mouth sores didn’t happen. Yet. I may or may not encounter them in the next couple of months but I think I might have dodged a bullet. Gastroenterologistically (did I just create a new word?) it’s been rough, but every day I feel a little bit better. I’m incredibly lucky.

Today is day six after the transplant. I’ve moved all my stuff into the basement. If I have the standard recovery. I’ll be coming up out of the basement on day sixteen. I’ve had some perilous stomach cramps and I’m feeling pretty damn weak. After the basement portion of this ride, if all goes well, I move into engraftment, when those courageous little stem cells find their way to my bone marrow, and I’ll be moving into recovery.

There’s a lot of talk about the basement period but nothing definitive. I’ve been told that my reaction and the amount of time I’m going to feel crappy is contingent upon my physiology. No two basements are the same. The new Dr. making the rounds, Dr. Nooka says that the discomfort I am going through is pretty typical.

On a lighter note, I may have been envisioning this period worse than it’s turning out to be. The nurses are able to give me relief for most of the symptoms. I got a new sleep med added to the arsenal. It’s called Rozerem and it’s like melatonin with an attitude. I take that and an Ativan right before bed, which seems to be working.

As long as I’m distracting myself I’m okay. My sister sent me a sketchbook and some beautiful gel pens. Other highlights of my day are counting the helicopters, harassing the nursing staff and complaining. I have every intention to work on my screenplay. During my MBA I had an unconventional professor who talked a lot about task avoidance. My screenplay is a task I’ve been avoiding. In successful screenplays there’s always a B story. I’ve been struggling with the B story a bit but I think I’m on to something.

I appreciate all the great comments I’ve been getting on thewilworld. I initially thought about doing a video blog but that really isn’t me. I’m enjoying the writing. Please tell your friends about it.

Sorry, I’ve been slacking. The chemo caught up with me a little, I think. I’ve got a little nausea and some GI distress, but that’s the extent of it so far. One of my tasks is to get as much exercise as possible, so I’ve been out walking the ward, trying to push myself. This afternoon I also did a few minutes on a stationary bike.

With the transplant I received 13.74 MILLION stem cells. I’ve been told this is a very large number of cells. The process was a little anti-climactic. Dennis and Sloan and Mark cut up and kept me in good spirits.

I had a very sad conversation this morning with a mother whose son was supposed to be checking onto the ward for a transplant, but he’s got some rare blood cancer from Africa and instead of responding to the chemo his cancer has come back and now he’s non-responsive. I think he might have left the world today-there was a big huddle down at his room later this afternoon. There’s a lot of sadness up here on the ninth floor.

Me, I’m trying to eat things and drink things and walk around in circles up here. I’ve had a few guests that have brightened my day more than I am probably able to show. My phone continues to blow up with folks checking on me. Mark has been fantastic. I’ve been moody and a little morose but having Mark here and doing stuff we ordinarily do has given me a sense of normalcy, whatever that is.

My next hurdle is called The Basement. It’s the period of time when my white blood cells and platelets are going to be virtually non-existent. The little swimmers are making their way into my bone marrow to start what they call engraftment, where the positive stuff starts to happen. In the meantime, I’m going to be weak and sallow for a few days before the building process begins. Supposedly this timeframe is going to suck pretty badly. I’m going to try to post during this time but I can’t guarantee how lucid I’m going to be. I’m hearing all kinds of conflicting reports. Maybe my virile little stem cells will make the basement less scary. I’ll try to keep y’all informed.