Tick-tock. My 100-day period of isolation is coming to a close. A lot has happened and nothing has happened. Recovery is an incredibly personal experience. At times I’ve felt like a monk sitting on top of a mountain, alone, receiving prayers, gifts, and well-wishes from my family and friends below. They pile up, but at the base of the mountain far away from where I sit.
Twice a week we go Moores Cancer Center at UCSD to get my blood drawn in the infusion center. They check my blood labs for my white blood cell counts, my platelet counts, my hemoglobin levels and my neutrophil counts among other things. They also check my body chemistry to make sure that my liver and kidney functions are ok and that my electrolyte levels are good. One of my drugs, tacrolimas, is an immunosuppressant — vital for keeping my sister’s immune system from attacking my body. They check my tacro levels weekly. Most visits, I require an infusion of magnesium because something about the tacro causes me to burn it off. Once a week I visit my doctors. This gives us a chance to bring up our ailments (nothing is too small), worries, and discuss our labs and course of action. The doctors also check to make sure I’m not developing a rash or pneumonia —things that wouldn’t be picked up in my labs.
(Above: Matt during one of his infusion appointments.)
At home my drug regiment started out absurd and has steadily been dialed back. I’m on a home infusion of anti-fungal meds, a liquid dose of antibiotics, and a large handful of pills — 25 to be exact. Most of those are tacro pills and magnesium supplements to counter the side effects of the tacro. When we first left the hospital, we had a giant whiteboard with our pill schedule listed out for the week. As the weeks have ticked over and it has become routine, we put away the whiteboard and work from memory. Not having the whiteboard staring me in the face all day was a subtle emotional hurdle.
My Physical Health
When I was first released from the hospital at the end of November, it was a catharsis like I’ve never experienced. The pain, discomfort, fear, loneliness, and isolation of the transplant in-patient term was over. I had received a life-saving procedure and walked out the door a few weeks later. My life reclaimed. But first I had to recover.
We were warned during our pre-procedure meetings with our medical team that recovery was going to be slow and non-linear. It was likened to a shuffle: two steps forward, one step back. I didn’t believe them. I understood the words, but with my previous chemotherapies I felt rough for a couple of weeks and then bounced back quickly. This was nothing like that. For the first 8-10 weeks (including the hospitalization) I was a shell of my former self. I could barely walk to the car, I couldn’t stand for more than 2 minutes, I couldn’t shower myself without help, and I had to be particularly careful not to pass out from over-exertion. My attention span was naught and I spent my days napping or watching tv, often too weak to do it sitting up. I could barely eat or drink and often when I did, it would result in a stomach ache. I was constantly weak and tired.
And then, for no obvious reason at all, I started feeling better. It was early January and there was no discernable difference in my blood labs, but I suddenly had the strength to walk to and from the car without the need to sit down. It wasn’t much compared to my previously healthy self, but it was clearly progress. Another discrete jump happened about 2 weeks ago. I woke up feeling different. The day prior I couldn’t manage to walk much more than 200 yards but now I can walk for 20 minutes without needing a break.
My newfound strength also means I can stand long enough to make dinner, that I can help fold the laundry and put things away, that I can be safely left on my own for a few hours. That has really made a difference for us. Dani can finally go to a yoga class or go grocery shopping without needing to find me a babysitter. She appreciates the break and I appreciate the solitude.
(A quick note to follow up Dani’s post the other week; our relationship is doing fine. A few people asked if we were doing ok and we are. Her last post was an honest expression of the frustration, loneliness and heartbreak that is being a caregiver. I read it before she posted it and thought it was well-written and truthful to our experience. As she said, things are getting better as my health improves so there’s no cause for worry.)
My Emotional Recovery
There’s a lot to the emotional side of this. I haven’t unraveled the full extent of the emotional baggage but this is what I understand so far:
In the early days after being released, we were totally consumed by the fear of getting sick. With my embryonic immune system further suppressed by drugs, we were in constant fear of fevers. Dani would check my temperature regularly and we would agonize over changes of 2 tenths of a degree. Only a week after I was released from the hospital, my temperature spiked and I was re-admitted for a week of monitoring. Released again, I spiked another fever a week later. That one abated within hours after we arrived at the Emergency Room, and we went home for a night of fitful sleep.
(Above: How Matt spent most of his days for the first couple months following the transplant.)
The stress of worrying was a compounding cycle. Dani and I would both worry about the slightest changes to my health, but our fear kept us from discussing it with each other. As she said, it was a very isolating period. After we put together a couple of weeks in a row of not getting sick, the anxiety abated. My doctors weren’t nearly as worried as we were. My blood counts were stable, my weight was stable, and I wasn’t exhibiting any signs of Graft Versus Host Disease (GVHD). Our focus shifted to getting to the 100-day mark because it was tangible.
As my daily focus has expanded, so has my understanding of my situation. My existence has become monastic. Rise, eat, take pills, wait, take pills, wait, eat lunch, take pills, read/watch tv, eat dinner, take pills, wait, take pills, shower, sleep. Every day. When we have doctor's appointments, they get added to the routine. Until we started going on walks this past week, I never left the apartment except to go the hospital. My life is exceptionally boring.
Early on in my recovery, Mom asked if I was depressed. I wasn’t then and I’m not now, but my daily behavior does have that quality. Every day is Groundhog’s Day. No matter what happens, tomorrow will be the same. It’s hard to get motivated to do anything. It’s emotionally difficult because, prior to my diagnosis, I felt very empowered to make decisions and control the direction my life was going. I was also healthy and strong. Now I have the specter of ill health haunting me. While I have moved past the fear of day-to-day sickness, I have no idea how “well” my new immune system is going to perform. Leukemia isn’t a solid cancer with a growth or tumor to which I can ascribe physical properties and states of being. I can’t say that my leukemia is shrinking or retreating, or that it will be excised shortly. I cannot get angry at it or forgive it. Rather, it exists in an ethereal state. That’s hard for me to deal with. I’m an engineer. I think linearly: identify a problem, choose a course of action, collate the results, alter course if results are unsatisfactory.
That process doesn’t work here. We’re gathering an absence of results. It’s a collection of double negatives: I haven’t shown signs of a cancer that I no longer have. How the hell am I supposed to work with that? To hang on to any semblance of control and understanding, I study my semi-weekly blood labs for any irregularities. Hemoglobin dropped from 10.2 to 9.8 or my eosinophils are 6% instead of being below 4% -- no idea what it means but I worry about it until I have a chance to ask the doctors. Even then, the answers can be unsatisfactory. Usually, my results are a normal fluctuation, but that’s not an explanation of why and there’s nothing I can do to influence it. More relevantly, the explanations never verify that I’m going to return to full health. I am no longer healthy, strong, or in control. That is a blow to my self-identity and I’m not sure how to get past it. All I know is that I will. I made the decision in the beginning that I would not let this destroy me — not physically nor mentally — and I am committed to that resolution. I can't say that it hasn't given me a run for my money — it has certainly beaten me down at times —but it will never destroy me.
(Note: This blog post from Matt was written last week and just finalized last night. Today is officially our "100 Day" post-transplant milestone! More updates to come on that soon.)
(Above: A text from my best friend this morning!)
(Above: James and April flew to San Diego to spend a weekend with us and since we couldn't go out to restaurants, we made restaurant-style food at home!)