I Grant You Three Lists...
"I failed at all of the above and felt like a useless sack of potatoes. Two steps forward, five steps backward."
This week, I came home after a 16 day inpatient stay at MGH for an autologous bone marrow (stem cell) transplant. It went fine. I am feeling 85%. It’s mid-September, which means I’ve been doing this cancer thing for 6 months. In that time, I’ve learned some things that will be useful for the rest of my life. A lot of this knowledge should be directly applicable to the next young healthy 42 year old who gets diagnosed with multiple myeloma. Some of it may be generally useful to those confronting cancer or chronic illness, or adapting to new life circumstances.
This 6 month milestone is significant because it means I’ve handled all the major oncology treatment types for stage 1 multiple myeloma. These include:
Surgery (tumor resection and spinal fusion / stabilization. A 7 inch scar running down my neck.)
Chemotherapy (8 cycles of Dara-KRD, of which I’ve completed 4. Note this includes targeted therapy (Kyprolis), which are molecules which attack cancer and try to spare healthy cells)
Radiation (10 fractions of targeted radiation to the spine and surgical area)
Bone Marrow / Stem Cell Transplant (autologous - using my own bone marrow, and taking the full 200 mg dose of melphalan, a high dose chemotherapy which leaves me with a shiny head. I finally get to look the part.)
As oncology treatments go, there are a couple others: immunotherapy and hormonal therapy that I have not done. I’d put these in the general bucket of ingesting molecules to attack and reduce the number of cancer cells, and putting up with side effects.
Suffice to say, some of these were not pleasant, but they are in the past. I have responded well in that the treatment regime lowered my cancer cell count to near zero (but not zero). At present, there is no cure for multiple myeloma, and likely will not be for another decade. I am in remission now, able to do 90% of what I want to do, have a relatively high quality of life, and a good prognosis for many more decades. More importantly, I know I can handle the remaining 4 cycles of chemo because it will not be worse than the first 4 cycles. When my multiple myeloma returns in the next 3-8 years, I’ll know how to handle a second round of treatment, which will be some combination of the 4 treatments above, and possibly CAR-T Cell Replacement Therapy.
Being a Sack of Potatoes
There’s a lot to cover. Let’s dive into the middle:
Sometime this past Spring, I recovered from surgery and had a few cycles of chemo under my belt. I underwent a short radiation treatment with minimum side effects. I had recently returned to work part time. I was happy to be able to pick up more of the home load and had been driving for weeks already. I picked up my younger son early from school to take him to an eye doctor’s appointment. I dialed into a conference call for work while in the car. I got on the highway and headed towards the eye doctor’s office 22 minutes away with a few minutes to spare.
The end result was, we arrived at the eye doctor’s office 28 minutes late. I was frazzled. They’d given up our slot, and we had to reschedule it. I don’t remember anything of the work call other than I was trying to find words and keep up. While I was driving and talking on the work call, I missed the major highway exit (I-93N Route 128) and kept on driving for 5 minutes until I realized it. Confused, I turned around. Then, once I got within a quarter mile of the eye doctor’s office, I drove in circles for 15 minutes until I found the office. I made 8 U-turns during this time. I had it pulled up on google maps the whole time, but couldn’t figure out how to turn into a giant parking lot. It wasn’t due to heavy traffic or an accident. It was chemo-induced brain fog. A recent Atlantic and NYT piece highlights COVID-induced cognitive impairment, or brain fog. There are millions of people experiencing this in some form.
In these 60 minutes, I simply ran out of processing power while trying to do these things:
Follow what my colleagues were doing to solve problems at work
Verbalize some succinct words to help the focus the team on what we might do next
Operate a car safely in moderate traffic, and navigate to a place I’d been dozens of times before at a normal pace.
Talk to my son and figure out how his school day was
Get my son on time for his checkup to make sure everything was fine.
I failed at all of the above and felt like a useless sack of potatoes. Two steps forward, five steps backward. Time to adapt to a new reality, again. When people encourage or praise cancer patients for being strong fighters, they probably mean enduring physical trials with grace. And sure, there are plenty of those fights along the way. It usually goes like this: Ingest a pile of molecules which leave you feeling like a sack of potatoes, uncurl yourself from the fetal position, and get up and go for a walk or do another pedestrian task at 10x the time and effort. Then go to back to bed. This is pretty straightforward for our animal brains. Less straightforward is dealing with cognitive impairment that comes with many chemotherapies and oncology treatments. You know you need an Intel Core i7 processor and 16GB to go about your modern knowledge worker day. Instead, you are running around with an x386 from the early 90s with 4MB or RAM. The most annoying part is that I could not wholly engage people, ideas, or tasks insightfully, effectively, or reliably.
I spent a few weeks googling “how to fix chemo brain fog,” then more urgently, “when will chemo brain go away.” The answer is sobering- months to years to never. I talked to some other people who went through similar treatment regimes who told me you gradually get used to it, and figure out ways around it. Oof. I spent more time googling things like, “cancer fucking sucks.”
Weeks later, I had my own rough coping mechanisms for brain fog.
Let’s call this LIST A:
Focus on single, clear, and simple tasks.
Streamline inputs in series. Don’t try to multiplex incoming signals. No calls while driving.
Hold only 1 task, number, or location in your head. Usually the next one you’ll need.
Give yourself 33% more time to get places and study maps before you get into the car.
Give yourself 2x time to get any executive task done (sending email, scheduling an appointment, paying bills).
Prioritize processing power and memory for physical safety: driving, turning off the stove, and using sharp objects safely.
Think about conversations before you have them and practice the words and names.
Tell people close to you that you will need their help to do some embarrassingly simple things.
Lower your expectations for how many tasks you can do, but try to do them to the same standard even if it takes 10x as long.
Do not try and fake higher functionality. It will only make a sloppy mess of things that you’ll have to clean up later.
Because processing power and memory is limited, I also converged on these rules.
Let’s call this LIST B:
-Focus on one person and one conversation, and repeat back to confirm your understanding.
-Focus on the signal. Filter out noise from workplace politics and insecurity. Don’t get distracted by the noise.
Be slow to take offense, especially due to others’ insecurities. There is no extra processing power to get worked up over this. Still have standards, but delay emotional judgment of others.
Focus on a few relationships and people that matter. Julia. The kids. My parents and family. Friends. Show up and be present.
Be upfront with trusted colleagues and friends and ask for help.
Vocalize your appreciation and gratitude to people around you. Be genuine.
Cut out the noisy people from your life: drama queens, self-centered people, and people who complain about first world problems.
Continue to process the wider world, but focus on acting locally. Take on a few things but do them well and consistently. Bow out from the rest until you have more mental capacity. Focus on what you can control, and let go of what you cannot.
Try to exercise and swim, which helps stimulate brain activity. Keep the animal brain strong.
Remember that even when you feel like a sack of potatoes, many people would still trade places with you in a heartbeat.
Implicit in this cognitive impairment is that I didn’t have extra processing power or motivation for these things.
Let’s call this LIST C:
Integrating ideas through reading and writing (and hence no substack posts for months)
Art and creativity
Learning new things
Making things or fixing things
Sense of humor. I could barely process the world as it was, let alone try to rearrange it to be funny for myself of others. Get worried when you lose your sense of humor.
Working through stimulating conceptual problems, like excel models for global manufacturing. A bit concerning that this is required for my current professional role and responsibility. It’s also my general usefulness (and employability) as a modern knowledge worker.
600 Hours in the Breakdown Lane
In the first substack post, I wrote about the indomitable spirit to buoy myself for the long fight to come. Having gone through the hardest parts of this journey, I can now articulate that for me, indomitable spirit has these six parts:
There is some physical grit required to endure discomfort. Willpower to get out of bed, and stubbornness to stay out of bed.
Strive to see things as they are, despite the lens of pain and discomfort.
Have a goal and focus on it. Have minimum standards for yourself.
Develop coping mechanisms and run rules to deal with the reality in #2 to achieve #3.
Maintain a reserve of hope, positivity, and optimism.
Engage others to help you. Do not hide.
Before I go on sounding like I had this all figured out or was wise from the start, let me reiterate that this journey had plenty of moments in the breakdown lane. In the past 6 months I estimate I spent 600 hours like this:
Curled up in the fetal position awake in some kind of discomfort. Some of it was searing post-surgical pain. Most of it was a malaise of nuisance side effects.
Unable to sleep in the dark, but unable to overcome the activation energy to get out of bed. Sometimes caused by the steroid energy roller coaster.
Googling things like “how bad is multiple myeloma.” Cancer doom scrolling.
In the horizontal position, awake, but without enough energy to read or think clearly. The recurring thought pattern is, “I need to figure out how to make this work if it’s going to be like this for the long haul.”
With an uncompleted task in front of me, completely frustrated and feeling like a sack of potatoes. Sometimes in tears when the kids aren’t around.
These 600 hours are incremental to normal doom scrolling, binge-watching, daydreaming, zoning out, and interstitial reflection time. I’ve come to learn that staring off into space is normal for cancer patients who have brain fog, and are processing their new and difficult realities while putting up with physical discomfort. I could have used these precious hours to play with our boys, finish up household projects, enjoy nights out with Julia and our friends, and do productive, meaningful stuff. In many ways, cancer wastes a lot of time. It derails plans. It deflates fun. Staring off into space on the bed in the breakdown lane worries your loved ones.
In retrospect, I wouldn’t trade these 600 hours for anything. Through this forced meditation, I have refined my 3 lists. These are coping skills and a recipe for a full life in the next 50 years. List A is fundamentally about being present. List B is about being intentional, genuine, and unburdened. List C is about being and sharing your best colorful self with others during your one wild and precious life. These lists are not mine alone. They are built on the foundations of stoicism, Buddhism, and Viktor Frankl’s logotherapy. Through my cancer journey, I have operationalized these philosophies into tenets that work for me. I do not know if they are readily transferable to others without spending seemingly interminable hours in your own breakdown lane.
If you are recently diagnosed with cancer, managing a chronic condition, or adapting to a new reality, I hope that you can believe that the “breakdown lane” might better be named the “building resilience lane.” I look forward to hearing about your lists. Even when I was short on brain power, my empathy for the suffering of others increased. I wanted to know what they were up against, and how they were dealing with it. I did not expect that dealing with my own shit would give me a lot more energy to understand and support others dealing with theirs.
6 weeks after all this first went down, I started physical therapy at Spaulding. At the time, I was learning how to sit up and move my head around safely. Lauren, my physical therapist who specializes in oncology patients, asked me about the things I liked to do. It came out that I had lots of hobbies and lived an active life. Lauren, through assigned exercises, reminded me that the whole point of recovery and oncology treatment is to keep doing as many of those activities as possible. The goal wasn’t to have good blood counts and undetectable cancer scans. It was to live the fullest life possible. With so much time spent getting blood drawn, taking infusions and medicines, and tracking results, I am grateful that Lauren re-stated the goal: to not only live, but live well and fully. In the breakdown lane, this true goal can be masked by chemo brain fog. Thank you again Lauren.
Let’s call it a day.
Below is an appendix of the physical discomforts of the first 6 months of multiple myeloma treatment and recovery. Do not dwell on it. It’s a temporary pile of pain that needs to be eaten. I include it to help others who need to prepare themselves for this long fight. Enduring the physical side effects is not the hardest part of the cancer journey. It is not trivial. It is also not the end state victory.
I love the combination of your analytical and philosophical mind here, Jason. You are transforming a grueling ordeal into a learning experience, which I suspect is the best any of us can hope for from a grueling ordeal.