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On Recovering After a Stem Cell Transplant

As a transplant survivor and peer volunteer, I have met with over 150 transplant patients. The most common question I hear concerns what recovery looks like. People want to know about timelines, precautions, complications, medications, benchmarks, and much more.

I can only answer these questions from my experience, and no two outcomes are the same. But I’ve read and heard enough other stories to know where mine is typical or exceptional, so I can also place my story in a broader context.

In June of 2016, I was diagnosed with acute myeloid leukemia. I underwent induction chemotherapy and achieved a temporary remission. In October of 2016, I received a double cord blood stem cell transplant. I fully recovered and have returned to all my prior activities, so mine is a very positive story. Along the way, however, there were several memorable challenges.

Prelude to a transplant

My initial treatment required a five-and-a-half-week hospital stay. It was one week for the traditional “7+3” chemotherapy regimen, and another four and a half weeks to monitor and treat the inevitable infections that followed in the wake of chemotherapy-induced immunosuppression.

My diagnosis was routine for my providers but shocking for me. I was asymptomatic and feeling perfectly healthy at my annual physical. But low white blood cell counts triggered a bone marrow biopsy that established my diagnosis. I was hospitalized the next day and started chemotherapy the day after that. My treatment was underway before I even understood my disease and its bleak prognosis.

When they told me to expect a 5-6-week hospital stay, I was dumbfounded. I quickly realized that I needed ways to cope with how my world had suddenly become very small and quite precarious. Over the ensuing weeks, I developed and honed several crucial strategies.

First, I relied upon mindfulness, meditation, and yoga. It helped me banish thoughts about the past and anxieties about the future, and to non-judgmentally accept and live in each moment as it unfolded.

Second, I did as much physical exercise as my circumstances would allow. My routines included stretching, isometric exercises, extensive hall walking, squats, lunges and pushups. I did it mindfully, and these routines structured my days, increased my energy, and lifted my spirits.

Third, I was a pro-active patient. I cultivated good communication with my doctors and nurses. I asked lots of questions about my treatment and became a collaborator in decisions about medications, dosing, and deciphering and treating the many infections and side effects that came my way.

Fourth, I maintained my robust sense of humor. Sharing jokes and witty banter with my medical providers broke the ice, resolved the tension, and humanized our consults. It also gave friends and family a way to relate to me as the person I’d always been rather than the patient I’d recently become.

Fifth, I relied on a supportive belief system. For some, that’s religion. For me, it was a secular worldview based on my social science background. It encouraged me to learn about my condition and fostered a practical, problem-solving orientation to all the challenges it posed.

Finally, I wrote my story from the very first week. I sent detailed reports about my status and reflections as a cancer patient to a large group of email correspondents. Writing for others forced me to understand my journey so I could articulate it for them. This writing became a psychic survival mechanism (and a subsequent memoir).

When the time for transplant arrived, I packed a bag, grabbed my laptop, and took these coping strategies with me. As doctors cured my body, these strategies sustained me throughout everything that was to come.

The Transplant and Hospitalization

Like many patients, I was admitted to my transplant hospital one week before the actual procedure (day -7). I underwent conditioning chemotherapy and full body radiation. Upon my transplant (day 0), I was told to expect another three to five weeks in the hospital before I could be safely discharged.

Days 1-7 were uneventful except for some moderate nausea due my prior chemotherapy and radiation. I got some relief from a drug called marinol that allowed me to eat regular meals during this time. As my counts hit bottom, I was closely monitored for fevers and infections. Even so, I felt good enough to do daily exercise, walk on a treadmill, do yoga, and be as active as possible while confined to my room.

On day 8, my doctors said I was doing so well they were thinking of discharging me in a couple more days – much earlier than expected. But then I developed an infection and a recurring fever that spiked every twelve hours for several days and delayed my discharge.

By day 19, my infection and fevers had resolved, and I went home under the watchful eye of my caregivers. I thus left the hospital in just under three weeks since transplant – much quicker than the 3-5-week hospitalization I had been told to expect.

A Memorable Month at Home

From day 20 to 50, the plan was for daily clinic visits to monitor counts, treat symptoms, and assess progress. On day 21, a bone marrow biopsy revealed that one of my donors was 99% engrafted, which was an unusually early and complete success for a cord blood transplant. With engraftment underway, we then watched for signs of graft-vs.-host disease.

During this month (day 20-50), my caregivers were essential. They drove me to daily clinic visits for blood draws, provider consultations and needed treatments. From day 20-26, I received daily transfusions of platelets and several transfusions of red blood cells. Several more transfusions as well as injections of growth factor medications to spur new white blood cells followed throughout this month. After the second week, however, they reduced my clinic visits to fewer and fewer days each succeeding week.

That first month at home (day 20-50) was also when I felt the side-effects from my treatment most keenly. The lingering impacts of chemotherapy and radiation, the engraftment process, and multiple medications produced several memorable symptoms. There were aches and pains from the engraftment itself that I treated with ibuprofen, and ongoing bouts of nausea that I managed with marinol. I was also taking about 20 scheduled pills a day, including prophylactic antibiotics, anti-viral and anti-fungal medications, anti-rejection medications, and several pills to manage side effects of these medications.

My most memorable symptom during this period was a staggering level of fatigue as my body underwent this transformation. I was sleeping eight to nine hours a night but still required lengthy naps in the late morning and late afternoon. I couldn’t stay awake for more than four hours at a time and was totally exhausted by nightfall.

On day 39, routine blood work detected a cytomegalovirus infection. It’s one of many critters that can reside in our gut our whole lives unbeknownst to us. But with immunosuppression, the virus can become active and pose serious danger. It is usually well controlled if detected early and treated quickly, so I was immediately put on a more powerful antiviral drug to address the infection.

The virus drastically reduced my white blood cell count while the antiviral medication added further immunosuppressive effects. For a few days, I had additional fatigue, aches, chills, and nausea. When the virus and anti-viral forces fought to a standstill, they contemplated admitting me back into the hospital for several days of IV, antiviral treatments. Instead of re-hospitalization, however, the compromise treatment was an outpatient infusion of IV immunoglobulin to boost my white blood cell count while the antiviral medication gradually tamed the virus. With that, I continued my recovery at home.

Through the First 100 Days

From day 50 to day 100, I experienced gradual if uneven improvement. Clinic visits tapered to once a week or less. Bone aches ceased and nausea all but disappeared. Fatigue also decreased, and when I did feel tired, I could usually trace it to increased activity levels compared to my first 30 days at home. As I was able to reduce doses or eliminate some medications, my mind cleared and my energy increased. While I experienced minor rashes, dry eyes, and sinus headaches, there was nothing that required major medical treatment or raised suspicions of graft-vs.-host disease.

By day 58, I began experiencing neuropathy in my feet. This is a common side-effect of chemotherapy, but in my case, it has been blessedly mild. It mainly presents as numbness and tingling under the balls of both feet. I was told it might resolve within a year, but it remains the only side effect that has persisted and which I now regard as permanent. It has not responded to acupuncture or cortisone injections. My best adaptation has been specially designed shoes and custom insoles that take pressure off the sensitive areas and make the condition quite tolerable.

By day 60, I was having trouble lining up caregivers but still needed to get to weekly clinic visits. I had been prohibited from driving or being without a caregiver for the first 100 days, but that was no longer practical. I carefully began driving myself to clinic visits. By then, I knew how my medications affected me and so I delayed my antifungal medication and the blurry vision it caused until I safely returned from my outings.

On day 78, my oncologist recommended removing the “Power Hickman” central line that had served me well for almost seven months. It had been with me since the beginning of my treatment and had facilitated painless blood draws and countless infusions of blood, platelets, IV medications, and chemotherapy. But with the reduction in all these procedures, the risk of an infected line was becoming greater than the benefits of keeping it in place. An added benefit was being able to take a shower without wrapping my entire upper torso in Saran Wrap to protect the gizmo.

Day 100 was a significant benchmark for several reasons. I had another bone marrow biopsy that confirmed full engraftment and no residual leukemia. Reviewing my biopsy results, blood tests, and overall progress, my oncologist said my recovery to date was “as good as it gets.”

At this time, I was able to eliminate or reduce many of my medications. More importantly, I began to gradually taper my anti-rejection medication (cyclosporine) over the next three-month period. The gradual pace of this taper was meant to allow my old body and my new immune system to learn to get along with each other, restore full immunity, and avoid GVHD

By this time, I was feeling much better and was eager to return to my regular activities. Since my blood counts were all good, I asked my oncologist her advice. She provided a rather technical explanation of why I was still at considerable risk and needed to avoid crowds, continue wearing my mask in public, and follow other precautions.

My layman’s interpretation of her explanation was that even though I had sufficient white blood cells and neutrophils, my anti-rejection medication would still prevent them from fully activating in case of infection. So despite feeling better and having good counts, I needed to maintain precautions until my anti-rejection medication had run its course and my immune system was more functional and able to protect me in a germ-filled world.

Completing the Marathon

From day 100 to day 180, I continued gradual improvement and weathered some minor bumps in the road. My clinic visits were now spaced out every couple weeks, and I began to see other practitioners to assess some peripheral issues arising from my diagnosis and treatment.

Since my leukemia put me at risk for skin cancer, I saw a dermatologist who detected a small, basal cell carcinoma that was easily excised. I continue to see her every six months for full body skin checks with no further issues. My leukemia had also caused some retinal hemorrhaging that was diagnosed before transplant. A follow up visit during this period showed that all retinal issues had completely resolved with the eradication of my leukemia.

Even though I was now tapering my anti-rejection medication, its cumulative impact produced numerous unpleasant side effects. While I avoided the most serious ones, I nonetheless experienced flushing, hypertension, nausea, altered kidney function, neuropathy, weight loss, leg cramps, sinus irritation, abdominal swelling, and night sweats. I began a temporary regimen of blood pressure medication and rode out the other issues. To top it off, I also had a flare up of the cytomegalovirus, which once again was quickly detected and effectively treated with specialized antiviral medication.

On day 180, I had my 6-month biopsy which reconfirmed full engraftment and no residual leukemia. At this time, I stopped my anti-rejection medication and its unwanted side effects began to dissipate. I was also able to stop virtually all of my remaining pills with the exception of an antiviral medication which continued until day 365. With adequate immunity restored, I was cleared to do any activity I wanted with one exception: I had to avoid fungal sources of infection (yard work, turning over soil, fresh mushrooms, etc.) for the next six months because such infections are easy to contract and difficult to eradicate.

For me, this was a major psychological turning point. I accepted that I was actually better, resumed my “normal” life, and let go of lingering anxieties about my status. When my transplant oncologist said she didn’t need to see me for another six months, it was initially unnerving after such intensive monitoring. At the same time, it reinforced my sense that I had reached a major milestone in my recovery.

“As Good As It Gets” (and Some Cheap Advice)

After day 180, my care shifted back to my initial oncologist at my induction hospital. Monthly blood draws and bimonthly consultations gradually became less frequent. Four years out from my initial diagnosis, I now have blood draws four times a year and see this oncologist twice a year.

At year one and two (days 365 and 730), I returned to my transplant oncologist for my final two biopsies which found no residual disease.  At year one, they re-did my childhood vaccinations from dead viral sources; at year two, I received my remaining vaccinations from live viral sources.

There’s good reason to say my story is “as good as it gets.” First, I got into remission on the first round of induction chemotherapy. This does not happen for a significant minority of AML patients who require multiple rounds of chemotherapy or other treatments to attain remission.

Second, I had full donor engraftment in three weeks. Most patients achieve engraftment, but it typically takes longer or doesn’t happen as completely as it did in my case. In the worst-case scenario, a small percentage of patients never experience engraftment and face a very poor prognosis.

Third, I have had no graft-vs.-host disease. I had been told there was a 60-70% chance of acute (within the first 100 days) GVHD in cases like mine, but I had no symptoms that could be attributed to this cause. That reduced my chances of chronic (after the first 100 days) GVHD to 20%. Although it can appear years after transplant, I’ve had no symptoms as of this writing.

What is typical about my story are the various infections, unpleasant side-effects, and minor complications documented here. They are simply part and parcel of the disease, treatment, and transplant; few if any patients escape them altogether. But in my case, they were quite manageable with the excellent support I received from my medical practitioners and caregiver team. Thanks to them, I left my transplant hospital on day 19 and never returned.

Advice is cheap, so here’s my two cent’s worth. Even in the best-case scenario, recovery is so gradual that it’s hard to realize when you are actually making progress (especially when there are periodic setbacks). I learned to pay attention to even small steps of improvement and took heart when they occurred.

Here’s one example. Around day 40, I ran up a flight of stairs at home and became short of breath. I initially found this discouraging, but then I realized I hadn’t even run up a flight of stairs since my diagnosis, and that this was progress not regress. Recovery happens through small, incremental changes that eventually culminate in qualitative improvement. It helps to be aware of these small steps as they occur; you may even want to record them in a weekly journal to fully appreciate them.

Finally, some clichés bear repeating. Recovery is a marathon, not a sprint. Moreover, it’s a marathon on an obstacle course of potential complications. Don’t hesitate to ask for help from your doctors or accept assistance from your caregivers. It’s not a burden; it actually makes them feel better when they can help you out. Finally, cultivate patience, resilience, and fortitude as you go the distance. It will serve you well.

Facing Acute Myeloid Leukemia: Notes from a Survivor

In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures.  I felt great and had no reason to think I had any health problems.  When my doctor suggested some routine blood work, I readily complied.  When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied.  When the results came in, my life changed forever.

The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy.  I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin.  I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.

As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities.  If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant.  My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant.  If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.

My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank.  Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system.  For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.

For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace.  It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease.  Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”

Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.

The first set of practices that sustained me was mindfulness, meditation and yoga.  To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment.  Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next.  Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.

Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week.  I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects.  In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.

A second practice involved being a proactive patient.  Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.

On several occasions, my proactive stance made a positive contribution to my treatment.  When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect.  I suggested changing the dosing schedule, they concurred, and the problem resolved.  The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.

A third practice involved maintaining a regimen of physical activity.  During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons.  I developed a routine of walking the halls three times a day, trailing my IV pole behind me.  They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.

When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls.  But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.

A fourth practice involved maintaining my sense of humor.  I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings.  Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease.  Using humor became another way of keeping the cancer at bay.  It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.

Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor.  These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers.  In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.

A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery.  Narrating my story for others required me to make sense of it for myself.  The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me.  While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.

I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period.  This writing would eventually serve three purposes.  It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.

As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival.  But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.