Updated: Sep 14
“When all the parts of the puzzle start to look like they fit, Then I must remember there’ll be days like this” – Van Morrison
It’s been awhile since my last post. That wasn’t by design, just a lot of things changing and no clear lines of demarcation at the time. In hindsight, we’ve gone through some really significant milestones and are dealing with some setbacks that are unresolved. But as we turn this blog from an update on our lives into a platform to help other patients and families through their treatment and recovery process, discussing the ups and downs is necessary.
In July my chimerism test—the measure of how much of my new immune system was coming on line—jumped to 100%. That was great news as my T-cell line was hovering around 80%. My immune system is now fully functioning, even if it doesn’t know all of the instructions yet.
I started getting my immunizations for my new immune system, and in August, I returned to work. The transition back to work has been a challenge. Not only had I been out of work for more than 11 months, but I work in a technical field. I was learning the systems of a new company, re-learning Imperial units after getting fluent in metric, and re-learning the US engineering codes and design philosophies after more than 6 years away. It was a struggle to re-train myself to stay focused for 10 hours a day. No more laying on the couch at 2pm when I wanted to watch tv or take a nap. And the fact that I have 10 years of experience in my field means the expectations of my technical capabilities and production are reasonably high—so I put a lot of pressure on myself to hit a fast learning curve. I was anxious about it. I still am. It’s probably better to be your own harshest critic, but that needs to be calibrated. Too harsh and it’s just self-inflicted suffering for rewards that can’t be gained.
(Above: Matt working in doctors' appointments and blood tests before, after, and during work.)
Around the same time that my immune system kicked in, I got some mild Graft Versus Host Disease (GVHD) issues. My symptoms were quite mild at first—chapped lips, dry mouth, dry skin, watery eyes—but one stood out as problematic: my rapidly increasing liver functions. Weekly blood labs became semi-weekly as the LFT numbers (a measure of my liver functions) climbed 10% following each test. Even though nothing had changed in my diet or drug regimen, I had the liver enzyme production of someone who was drinking 3 beers a night...then 6...then a dozen. The doctors ramped up my dose of tacrolimus (a drug that suppresses my immune system) to try to keep my new immune system from attacking my liver.
And then I picked up a cough. It was dry, but sharp, and at one point I coughed hard enough to strain a muscle or separate a rib. I don’t know exactly what happened but It was painful to breathe deep or sit up or twist my body for about a week. I got over the pain, but the cough persisted and my breathing got shorter and tighter. Deep breaths triggered a dry cough.
A chest CT revealed pneumonia.
A conundrum: continue to suppress my immune system at the expense of getting sick, or let my immune system off its leash and risk liver damage. The doctors opted to protect the liver and go with really strong antibiotics.
(Above: Matt's daily drug regimen.)
Four weeks had elapsed since my cough had started. I had completed my course of antibiotics, and it wasn’t getting better. I had another CT scan and this one looked different. My lungs looked cloudy. The doctors scheduled a lung biopsy.
The biopsy came back with mostly non-results. It wasn’t a traditional bacterial/viral/fungal lung infection, it wasn’t GVHD, and I didn’t have lung cancer—which I didn’t even know was a consideration but was unnerving to hear mentioned. It was classified as “Cryptogenic Organizing Pneumonia” which is a coded way of saying “We have seen this before, we probably know why, we know what’s going to happen, we know how to treat it, but we don’t know how, or why it started now”.
The most likely conclusion is that Busulfan, part of the chemotherapy tandem Flu-Bu taken before my November transplant, was causing a delayed drug reaction. This could go two ways: it would clear up in a month, or it would get worse. Mine did neither. Follow up CT scans showed no progress or regression, but the long term outcome without improvement is fibrosis and permanently diminished lung function. So I started on a high dose of prednisone.
Prednisone is a steroid. Being the sporty type, my exposure to steroids has been mostly through hearing about athletes getting busted. I didn’t realize they’re a much bigger class of drugs with lots of different functions. I would try to explain but Wikipedia just confused me more. Prednisone has a very long list of side effects, many of which I’m dealing with: insomnia, ulcers, hand tremors, weight gain, water retention in my face and legs, a fungal skin infection, acne, anxiety, and periods of severe joint pain.
Weeks 1 and 2 were fine. My breathing felt great, and I had a ton of energy. I constantly felt like I was on my third cup of coffee. This coincided with my 35th birthday. To celebrate, Dani booked us a day trip to Catalina Island, and surprised me by having a bunch of our LA friends meet us at the ferry.
We spent the day wandering around Avalon, and drinking at a beachside resort (I had a milkshake, no booze). It felt great to hang out with old friends, and talk about all sorts of nothingness as we’ve always done. The sun was out, people were in a great mood, and Avalon has a quaint European Mediterranean resort town feel which amplified the vacation experience. The next day we met up with more friends for brunch. It was a perfect birthday weekend.
Around week 3 of prednisone things started to fall apart. Of the aforementioned issues, the outward ones are issues of vanity. Sure, I’m fatter than I’d like to be, and I have acne again, but those aren’t real issues. My legs feel a lot more swollen than they look. I can feel my pulse rippling through the water weight and it’s like my cell phone is buzzing in my pocket all day. Dani and I are taking walks most nights to try and loosen them up. I’ve stripped back my diet to remove acidic and spicy foods for my ulcer, and minimized my sugar intake to prevent the onset of diabetes (another side effect of prednisone). I’m on Prilosec for my ulcer. Anti-fungals for the skin infection.
That leaves the joint pain, ulcer pain, and insomnia. I don’t have a good answer for these. It’s a work in progress. Given the ulcer, I can’t take aspirin or advil. Anything heavier than that and I can’t drive to work or function when I get there, so that’s not an option either. At night, I take temazepam to help me wind down and get to sleep, but the steroids usually wake me around 1:30am or 2:00am. If I'm lucky, I'm able to fall back asleep around 5:00am or 6:00am for another hour or two before work.
I’m on my fourth consecutive week of 4 hours of sleep a night.
Last week I had dinner with my step-sister, a new mother, and our situations are shockingly similar. Consecutive nights of insufficient sleep piques the emotional stability and then anxiety about not getting enough sleep and makes it worse.
I used to be on the pregnant woman’s diet and now I’m living the life of a new mother. Oh, the experiences!
In my frazzled state, my minor complaints suddenly feel bigger than they rationally are. I’m not an emotional person so being emotional is extra confusing. I’ve gone back to therapy in hopes of building a toolkit for dealing with these issues. I’m practicing good “sleep hygiene” and turning off the tv/laptop/cell phone an hour before I go to bed. I’ve cut out caffeine entirely. My drug regimen and bedtime are consistent, but every night I wake up a few hours after I fall asleep with a brain that’s racing and I can’t turn it off. For the first few weeks I would lay in bed for hours trying to fall back asleep, but this self-imposed pressure only amplified my brain activity. Now I just get up when I get up and go to the couch. It’s where I’m writing this blog post.
As Dani pointed out, this is like the Serenity Prayer: I work at the things I can control, let go of the things I can’t, and try to have the wisdom to differentiate.
We are being active about going to the beach to just sit and stare at the water. It’s calming and meditative. We walk the beach holding hands. We practice mindfulness. I have a steadfast commitment to the treatment, to working hard while I’m at the office, and to the positive mindset that things will be better in a few months.
In a previous post I discussed the difference between being positive and optimistic. Optimism comes with expectations. I can’t have those now. So I’m sticking with being positive. Today is good, and the future is going to be better.