Quantifying the Suck
On surviving cancer and the value of experiential health data
It’s Tuesday afternoon and I’m running my hand through my hair again, stuck in a meeting.
“You should stop that,” a colleague whispers to me. “It’s distracting.”
I grip another handful, crushing his desire to control my world so I can vainly enjoy something that didn’t exist six months ago. Thinking back on that time, when my hair was barely a fingernail’s height, downy soft and sparse, feels like a lifetime ago. In reality, it was only a few months.
My one-year anniversary from completing therapy for Hodgkin’s lymphoma is this month, yet the memories of the experience are still raw, unbelievable. You had cancer, I tell myself. Serious cancer. You’re a cancer survivor; the luckiest of the unlucky. I am dazed by that thought.
I suppose nine weeks of chemo and three of radiation can leave one at a loss for words.
On one hand, I’m fortunate to have had a highly treatable disease; fortunate to have responded to treatment. On the other, grossly unfortunate to have had to walk the path in the first place.
These moments of pause are the ones my oncologist and physicians couldn’t prepare me for: the points on the ancient globe where sea monsters and mermaids were drawn. Being an engineer and physician, I reflect often on these uncharted points where data doesn’t exist for how I should be feeling. All the subjective parts about living that are more than just knowing your odds of survival or suffering an adverse event.
“Tell me what this will be like,” I said to my oncologist, a week before starting chemotherapy.
“It’s hard to say for you. It’s good you’ve been very active, are young and otherwise healthy. You should be fine. It will be hard, but you should be fine. Impossible to say how difficult it will be because everyone is different.”
She’s a saint masquerading as a mortal, providing wisdom through ambiguity. She knew what I was searching for — a summary of her observations over a career correlated to me, the individual — but she can’t provide it. What kind of person has a harder time? Who has it easier? What is the difference between the two?
“I can connect you with some patients who’ve been through treatment recently. Maybe they can help.”
One patient, a 65 year-old lady, had less disease burden at diagnosis than I. Although she was able to work during treatment, and offered that she shaved her head before starting chemotherapy (“…save yourself a step later.”), it was difficult to connect her experience to mine. The issues that come with illness like this, at 37 years old and mid-career, felt oceans away from her challenges.
The second patient, a 28 year-old male, was later-stage with bulky disease (an ominous prognostic sign) and had lived most of his life on the couch. Although his insight would be useful — “chemo is rough, man, get some weed and take as much Ativan as you can” — I had spent my life outside and wanted to know how much therapy would impact my activity and happiness.
Two throws and two misses.
Even considering that Hodgkin’s is relatively rare with an incidence of 2.8 cases per 100,000 people (breast cancer is nearly 40 times higher), and the volume of experience from treating it over the last 60 years, was this the extent of the data and patient network I could be connected to?
Technically speaking, I was searching for quantified experiential data at the patient level. How much worse will I feel? How far will my hemoglobin drop? Will I spend the day sleeping? How will my weight change? In engineering we’d call this the delta from normal; I wanted to know those values for someone similar to me. Surely a young entrepreneur had disrupted medicine (yet again!) by building an app to collect this kind of information, analyze it, and then apply machine learning algorithms to match me to a similar profile and follow my course. Right?
Sadly, despite all the funding and press coverage of Silicon Valley health analytics startups, and even Apple and IBM’s investment in healthcare research, scouring the internet for insight provided little comfort. Well-funded patient experience platforms, such as Patients Like Me, the American Cancer Society, and the Leukemia & Lymphoma Society — considered the premier guideposts for cancer patients — aren’t involved or interested at this level. They either host or link to forums where patients may post questions and insight at will, but offer no matchmaking by demographics, disease stage, or severity; further, nothing is concrete, reliably measured, or curated. Grinding through the encyclopedia of pages associated with these sites felt like reading a sad version of the classifieds (“68 y/o Stage IV. Can anyone help?”); the athletic equivalent of a stretch and a warmup, all before diving headlong into a major depression.
Even searching at the fringes of patient experience — independent posts like this one — yielded little insight. Although interesting from an emotionally reflective standpoint, nothing was quantifiable. Further, I didn’t see value in reading more about existential struggles, or a coming depression, when I was already at that threshold: I wanted to know values for change.
In the end, there was nothing remotely close to an answer for the most fundamental question of cancer patients facing treatment: what is this going to be like for me?
So, facing a few months of treatment ahead, I contemplated taking a swing at the problem on my own. Beginning with collecting the metrics created from simply going through treatment (lab results, therapy regimen, daily weight, number of steps and hours of sleep per day, volume of clinic visits and blood draws) I believed I would have enough objective data to create a relatively basic picture of the treatment experience.
Combining that objective data with a scoring system to assess how I felt three times a day, I believed I could tell a future version of me what to expect. My hope was that at least when Future Me went to Google and asked “what is treatment like for Hodgkin’s?” or “how much does Hodgkin’s treatment suck?” he could know that by Week 6 of treatment he’d be so anemic that hiking the local hill would feel like passing Camp 4 on Mt. Everest and afterwards he’d need a two-hour nap. Maybe his actual experience would differ for the better (or the worse), but at least he’d have a starting point for expectations
Cancer is an incredibly isolating experience. From the moment I read my own chest film in the Emergency Department at Stanford Hospital I knew I was fundamentally different than everyone else around me: I was sick. Left untreated, I would exit life within the year. Reinforcing that isolation were the shortcomings of the innovation and healthcare ecosystems to provide meaningful reference points on a personal level. Spending time trying to find actual human comparators only further cemented that feeling: I was shouting into a forest for a connection to the present and the future, searching for a breadcrumb trail that didn’t exist.
The last morning before starting chemo, rowing on Lake Merced under a heavy summer fog, I committed to creating my own trail and attempting to turn my experience into something meaningful for others. Survive or die, I said, the information generated from the experience shouldn’t be lost; there has to be a way to turn a profoundly negative event into a useful one. I didn’t want to be another contributor to the information vacuum, that default state where you endure months of treatment and are left at the end wondering how to explain it all.
So, Future Me…want to know what it’s like to go through treatment for Stage IIA Hodgkin’s?
Here’s my data and story.
Demographics at Diagnosis
37 years old, 6'1'’, 185 lbs, full head of hair
I spend my spare time rowing, cycling, and running up to 15 hours a week.
No smoking, rarely drink alcohol, try to eat well. No prior illnesses.
Vices: I bite my nails and read too much news.
Diagnosis
I found an enlarged lymph node behind my left clavicle (i.e. a Virchow node) on 6 June 2015. A trip to the Stanford ED showed mediastinal widening on my chest x-ray; physical exam and. CT scans demonstrated multiple fields of lymphadenopathy (enlarged lymph nodes) in my thorax. After undergoing a surgical nodal excision and PET CT scan three days later, I was diagnosed with Stage IIA Classical (Nodular Sclerosing) Hodgkin’s Lymphoma on 12 June 2015. My disease was confined to my left chest, left axilla, and left supraclavicular fossa. The largest node measured nearly 8 cm in diameter and was directly under my sternum. I did not have B symptoms (night sweats, fever, unexplained weight loss, shortness of breath, etc.) or bulky (i.e. “Stage IIX”) disease.
I was considered fortunate in that Hodgkin’s is one of the best understood (and most treatable) malignancies outside of childhood leukemia and testicular seminoma. Five year survival rates for Hodgkin’s are better than 85% for the lion’s share of stages (>90–95% at Stage IIB or less), and even if it recurs within the 5 year monitoring period there is still a coin flip’s chance of beating it on another chemo regimen. Thanks to generations of dedicated oncology researchers, we’ve gotten to the point where curing Hodgkin’s is less of a concern than discovering how to minimize the toxic side effects of treatment.
In fact, physicians will tell you treatment for Hodgkin’s is largely algorithmic. Meaning, depending on your entry stage and profile, you are placed on a specific drug and radiation regimen developed and validated by expert consensus. If it works, great; if it doesn’t, you move to another algorithm. It’s like having a trip planned for you from Point A to B. Based upon those two bookends, oncologists know from research what the most likely outcome will be: the guesswork and artistry of medicine isn’t eliminated, it’s just minimized.
Chemotherapy
I was given a choice for chemotherapy: either the ABVD or Stanford V regimens (both including post-chemo radiation). These protocols have demonstrated equivalent outcomes for early (less than Stage IIB) disease. ABVD is fewer drugs, takes longer, and isn’t too physically hard (granted, it’s still “hard”); Stanford V is far tougher physically, but takes one-third to one-half as much time as ABVD.
I chose “hard and fast” and began the Stanford V (pronounced “Stanford Five”) chemotherapy protocol on 1 July. Stanford V is a seven drug regimen that includes Doxorubicin, Vinblastine, Vincristine, Mechlorethamine, Bleomycin, Etoposide / VP-16, and Prednisone. These drugs are cardiotoxic, pleurotoxic, neurotoxic, and vesicants; they stress your kidneys and liver, are teratogenic / mutagenic, make your hair fall out, and leave you feeling terrible. Mechlorethamine is also known as “mustargen”, “mustine”, or “HN2"; it is the same nitrogen mustard used as a blister agent for chemical warfare during WWI. In layman’s terms, these drugs are bad shit.
Different combinations of drugs are given each week by IV over 4 to 6 hours in an infusion center. Four weeks of treatment comprise a “cycle” and you receive either two or three cycles for Stage IIB disease or less. The worse your disease, the more cycles.
At home I took prednisone by mouth, every other day, along with a number of other mandatory daily drugs to prevent or minimize the side effects of the treatment regimen. These included TMP/SMX (to prevent pneumonia), acyclovir (viral infection), aspirin (clotting), docusate sodium (constipation), prochlorperazine (nausea), omeprazole (reflux), and lorazepam (anxiety). Lastly, after the second week of chemo I had to give myself Neupogen (filgrastim) shots daily to keep my white blood cell count above the minimum allowable for outpatient chemotherapy.
How I Felt
Using a simple scoring system, I recorded how I felt three times a day, every day, on a scale from 1 to 5. I began recording the day before chemo began (30 June) and ended the day after radiation completed (5 October). Scores were based upon the following:
- 1: I feel terrible, heavy nausea and discomfort (☹️)
- 2: I don’t feel well, I have persistent nausea or discomfort (🙁)
- 3: I feel ok, maybe some nausea or discomfort (😕)
- 4: I feel pretty good (😐)
- 5: I feel great, as if I were healthy and rested (🙂)
The maximum score for any day was 15 (5 at morning, mid-day , and evening), and treatment days are marked with a gray bar, below.
From the data it’s apparent the effects of chemo were both acute and chronic. My scores would tank during the two days directly after chemo, and they progressively worsened, in general, over the long haul. The first week of each cycle was the hardest (coinciding with the mechlorethamine dose), resulting in a drop at of least third below the preceding value (e.g. “I feel 33% less good than yesterday”). Symptomatically, I felt like I was in a perpetual state of waxing and waning contradictions: starved but unable to stand the thought of eating, worn out but too anxious to sleep, nauseated but incapable of vomiting. I could control some of the symptoms with medication, but the drugs only served to take the edge off temporarily. After a month of chemo, I stopped trying to control my symptoms because they would come back twice as strong when the drugs wore off later and I was burned out on taking nearly 20 pills a day.
Quantitatively, my morning scores were better than afternoon or evening, and the first (mechlorethamine) and third weeks (vincristine and vinblastine) of each cycle were truly rough, requiring more time to recover than the other weeks. When tested for statistical significance (i.e. a “true” difference), the mean scores for weeks one and three were genuinely different (p < 0.05) from the second and fourth weeks; the overall mean score from the second 4-week cycle of chemo was also statistically different than the first cycle. Translated, odd weeks really were harder than the even weeks, and I was definitely declining by the duration of treatment and by each cycle.
Following the completion of chemo, I was given two weeks off to recover before starting radiation. The data shows that my scores climbed steadily back towards normal values (totals near 12 — 14) during that period, even recovering further during the early days of radiation. After being relatively steady at a total of 14 for several weeks, the totals then began to turn down again from the compounding effects of daily radiotherapy. The drop in scores during this period was especially strong in the afternoons and evenings, as the day wound down, when I would feel overwhelmed by very deep fatigue.
In hindsight, radiotherapy was a subtle beast. Like a Coca-Cola polar bear you can have as a pet until it surprises you with a maiming. Because it was physically painless, my natural tendency was to underestimate the effect. Whereas with chemo the nurses wear protective gowns (an obvious visual cue to coming misery), IVs hurt, your veins burn, you’re sick, and your hair falls out in clumps, radiation produces only a subtle smell of ozone. Comparatively, you may as well be on a cruise through the Mediterranean.
Reality was, again, quite different than anticipated. At the time, the only thing I could compare to radiation fatigue was my former career as a surgery resident, where some months I averaged nearly 120 hours awake and working per week. Sadly, even that benchmark wasn’t close: the fatigue from radiation was so profound that it rendered all other thoughts pointless. The only consideration was sleep, and it got to the point where going to bed was far more interesting than any social situation or activity.
Hemoglobin (HGB)
A good friend of mine, an oncologist, describes the systemic effects of chemotherapy as burning a house down to get the mice out. Sure, the chemo kills the cancer, but it affects everything else, too. Nowhere was his insight more evident than the influence on my red and white blood cells.
From the day I started chemo until the day I completed it (25 August), my body did not manufacture red blood cells (RBCs), the cells that circulate in your blood, containing hemoglobin that carries oxygen to the tissues of your body. This is because chemo interferes with the cell production systems that keep things running smoothly. RBCs only live around 90 days, thus as soon as you stop making new ones your net total begins to decrease. Plus, helping you out, the hospital laboratory pulls 2 to 4 vials of blood from you each week to check your counts again. The end effect is anemia, which manifests slowly, insidiously, over time. You can see this decline below.
Interestingly, the actual decline is not perfectly linear from the beginning, as one would expect with a full stop of RBC manufacture. There are large dips that follow hits from chemo, then my body would attempt to rebound, only to be whacked again into submission. Ultimately, the last three data points bend to a linear decline where, I believe, physiology finally gave in to the effects of the chemicals.
Physically, I didn’t notice anemia until it was legitimately in my face. I began with a hemoglobin of 13.5 g/dL and ended around 10.0 g/dL; losing roughly 30% of my oxygen carrying capacity over the course of treatment. That’s about half a gram (0.5) of hemoglobin per week, or the equivalent of losing a 1-Unit blood transfusion of packed RBCs every seven days.
At 13.0 g/dL, I felt the same as when I began treatment. When I hit 12.0 g/dL I felt some subtle fatigue and saw my power output values on the bike drop for the same heart rate I used to hold during steady state training when I was healthy. Around 11.0 g/dL I noticed that my resting heart rate, which usually sat around 46 beats per minute, had climbed to the mid-60's and would keep me from falling asleep. Hitting bottom, at 10.0 g/dL, I had serious daily headaches (your brain doesn’t like having less oxygen than it grew up with), felt like I was in a fog of fatigue, and was short of breath walking hills that I used run while shouldering a 30 lb pack. At that point I had lost roughly 25% of my oxygen carrying capacity.
Once finished with chemo my hemoglobin rebounded relatively quickly, almost linearly, to my pre-treatment value within two months. After a lifetime in athletics, this side of recovery felt like what I imagine moving from 14,000' to sea level must be like: winning a raffle for an additional set of lungs. I was surprised to see the rebound trendline after chemo to have approximately the same slope as the decline. Hooray, physiology.
White Blood Cells (WBC) — Immune System
White blood cells fight infection. Without them we would be consumed by the bacteria and viruses that live on and in our bodies, and to which we are exposed in the environment.
In order to receive chemotherapy as an outpatient, my WBC numbers (i.e. “counts”) had to stay above a minimum number. Lower than that minimum and you are termed “neutropenic”. If my counts couldn’t stay high enough on their own, I would have to give myself daily shots of a boosting drug, Neupogen. If they didn’t stay high enough after that, it was bad news: I would be admitted to Stanford Hospital and treated as an inpatient.
The effect of chemo on my WBC count was profound: it was like someone had dropped a bucket of fish poison in a koi pond. The first dose put my WBCs in the toilet, putting me right above the minimum to receive chemo during my second week. The second dose took that toilet value and flushed it. Because my counts were too low to receive therapy in Week 3, I gave myself daily Neupogen injections until the counts were high enough to continue chemo in Week 4.
I flirted once again with neutropenia when I came down with a case of bacterial sinusitis in Week 5. This experience is reflected in the data, where after my counts rebounded they nosedived again, almost entirely consumed fighting off a runny nose. I was put on antibiotics and, luckily, the counts climbed quickly with Neuopegen and therapy was not interrupted.
The value of Neupogen cannot be understated: it’s the entire reason I was able to complete chemotherapy. Without it I would have never finished my 8 treatments in 9 weeks as an outpatient.
Weight
I recorded my bodyweight every morning using a WiFi-connected scale. As seen by the high variance of the data, my weight fluctuated significantly from day to day over the treatment and recovery periods because of competing influences: steroids (prednisone) spur water weight and predispose you to more adipose (“fatty”) tissue composition, whereas chemo dampens your desire to consume food and is strongly dehydrating. Even so, I lost about 8 to 9 pounds during therapy at a relatively steady rate, eventually dropping from around 186 lbs to 177 lbs at the lowest point (a 5% decrease).
There was no obvious change in my body composition during therapy and I appeared to be losing muscle and fat equally. My weight returned to normal rapidly after I stopped chemo and was able to exercise and eat more regularly.
Activity
I recorded the number of steps I took each day by keeping my iPhone with me at all times. In hindsight, this was a beneficial feature of the device that kept me connected to the living world. Obviously, not all activity can be quantified in steps, so I had some modifying rules:
- Every 20 minutes of cardio with HR > 130 counted for 3,000 steps
- A full body heavy lift counted for 4,000 steps
- An hour of Pilates was worth 3,000 steps
Before starting chemo I planned to exercise every day that I could, just to keep from deconditioning and going insane. I figured that the day of chemo and the day after would be awful, so I planned those as OFF days. In reality, this was pretty much true: chemo was always on Wednesday, and in the first cycle I was able to get back on the water or to the gym by Friday afternoon.
In the second cycle it took two days to recover after a treatment and was usually Saturday afternoon before I felt stable enough to exercise. After I passed my 6th treatment I had to stop rowing as even light pressure at a low stroke rate made me feel like my heart was going to explode. I vividly recall my last row on chemo, out of breath at a snail’s pace, horrified from thinking I was going to give myself an exertional heart attack. From then on, I chose to hike Windy Hill in Portola Valley carrying a 30 lb. backpack for cardio (or ride the stationary bike), or go lift at the gym.
From the data, it’s evident that my activity trended down over time, in both the chemo and radiation periods, and really tanked in the acute peri-therapy periods. I was able to rebound relatively quickly following a chemo treatment (thus the high variance in the data) but it became harder as time wore on. Again, the mean during chemo (~10,800 steps/day) and radiation (~12,000) were statistically different (p < 0.05), showing that all things being equal, treatment phase had a direct impact on my activity volume.
Considering the trends, similar to the data on how I felt, my hemoglobin, and what I weighed, I can only imagine activity levels substantially worsening over time in a linear to somewhat-linear progression. You can’t escape the compounding, grinding effect of it all over time.
Sleep
I recorded my daily sleep volume, be it at night or from daytime napping. Bedtime was easy to record because I would take Ativan to sleep, per my oncologist’s direction, and it would put me down like a tranquilized rhinoceros. The only comfort in taking drugs to rest is that I knew exactly when I was going to sleep every night. The alternative to drugging up was lying awake, wondering about life with cancer.
Predictably, as fatigue from treatment mounted over the course of therapy my sleep time increased. This was true for total sleep volume, principally because of napping frequency and duration. Once into the radiation phase of treatment my napping largely subsided.
Subjectively, any kind of sleep during treatment was deeply disturbing. Beyond the fatigue and having no choice but to rest, entire blocks of time would pass where nothing could wake me. I had an unremitting feeling that life was leaving me behind, and it worsened every day. When I did arise I invariably felt worse than before I laid down, as if I had been clubbed unconscious. The displeasure of sleeping eventually became so visceral that every time I laid down I had to confront a palpable fear of impending death, envisioning someone finding me cold and pulseless in bed.
I recorded dreaming only once, early in the course of taking prednisone, when I leaped from bed in a panic after being attacked by a giant eagle. It was horrifying.
Subjectives
I recorded a number of qualitative milestones over the course of therapy, best explained on a timeline.
• 1 July: first treatment, adriamycin makes me pee red
• 2 July: eagle swoop dream, terrifying, feel awful from chemo
• 4 July: IV site burning, vein scarred, painful
• 9 July: bad reflux, trouble swallowing, incredibly constipated
• 10 July: hair has started falling out. that sucks.
• 12 July: sinus infection, started azithromycin, neutropenia, no chemo
• 20 July: hair roots painful, hair falling out everywhere
• 21 July: hair in tub, filling drain, emotionally unsteady
• 25 July: can’t stand taste of Crystal Light anymore
• 29 July: fourth treatment, persistent jaw pain (side effect of Vincristine/Vinblastine)
• 30 July: ravenous, ate an 8 piece bucket of KFC and three biscuits in one sitting
• 5 August: very heavy nausea, profound fatigue
• 7 August: shaved head, realized I need to start looking forward
• 12 August: 6th treatment, fingertips numb (side effect of vincristine)
• 16 August: really bad headaches, sick of blood draws
• 19 August: 7th treatment, two IVs simultaneously, crying
• 21 August: fell asleep on conference call, woke up to empty WebEx
• 22 August: continuous nausea, drugs won’t touch it
• 24 August: hiked Windy Hill at dusk, started crying at summit
• 25 August: last chemo treatment, emotionally fried
• 9 September: started radiation, esophagitis, miserable experience
• 18 — 19 September: orientation at MIT, feel like an outlier
• 27 September: bad esophagitis, trouble swallowing, no interest in food
• 3 October: profound fatigue, fingertips tingling, hurts to swallow
• 5 October: finished radiation, worn out.
Radiation
After my last round of chemo I was allowed a two-week rest before beginning radiation. The purpose of radiation is to minimize the chance of disease recurrence. Prior randomized trials have shown that even though one may demonstrate a complete response (i.e. you’re cured) to chemo, the chance of disease recurrence may be as high as ~20% over 5 years; with radiation, the risk of recurrence is in the low single digits.
Radiation appointments are brief, taking 15 to 20 minutes per day. Actual beam exposure time is maybe 1 to 2 minutes; the rest is positioning and processing. It took 15 business days for me to reach the recommended total dose of 30 Gy.
My deepest inklings of PTSD come from the radiation treatment and, looking back, this is evident in how little data I recorded during the time. It was a horrible, Kafka-esque experience: laid out under a giant machine, strapped down by my face with a hard plastic mask, no shirt and cold from the air conditioning, unable to move. “Clear the room!” they would shout, shutting the leaden door before firing up the emitter.
On the most primitive level, where chemotherapy was given by nurses with a human touch who empathized with me personally, radiation was given by technicians who demonstrated a manufacturing line kind of behavior. I was part of a queue for the day, corralled for processing, zapped, and then cut loose. The sterility of the process, treatment by the staff, and having to be restrained were all, collectively, so profoundly depressing. It’s still difficult now, 10 months after finishing radiation, to put into words. I hate it.
PET Scan
A week after completing chemotherapy I had my final PET CT to determine whether or not I had responded to treatment. The expectation for the scan is a complete response with no residual disease, and any indicator otherwise would be terrible. In the case of residual disease, I would have been admitted to Stanford and started on a much harder, alternative chemotherapy regimen.
There is little one can do to prepare for receiving the results of the scan. Mine was performed on a Friday morning, so I had to wait until Monday for the official read. I’m certain I’ve never been so anxious about anything else in my life. Facing a binary outcome on what you perceive to be the remainder of your time on Earth is not to be underestimated: you’re either “fine”, or you’re not even remotely fine at all.
I spent most of that weekend trying to distract myself. I went to the gym and the movies, eating lunch each day at my favorite deli. For three days in a row I climbed Windy Hill with the backpack, anemic and huffing my way to the top, summiting at dusk. On Sunday afternoon, I pushed myself as hard as I could up the trail, feeling victorious over making it to the end of chemo and the worst summer of my life. Celebrations with cancer are short-lived, I learned, when I broke down later in the parking lot, wondering if that climb might have been my last.
Monday eventually arrived after a long, sleepless night, and I learned my result. My clear PET CT is shown below. Complete response.
Epilogue
“Why is there no joy in this moment?” I stammered to my oncologist, straining to make words after learning my result.
“Because you’ve been through so much already…and there is still a lot left to go,” she said.
Her words represent the central dilemma of being a cancer patient today, the price of the emotional and physical tax paid to transform the unknown into the known hasn’t been estimated. Even as a physician, when I was diagnosed with Hodgkin’s I knew virtually nothing about the experience ahead. Further, the guideposts offered to me as a patient were alien and impossible to relate. Is that the best that we as physicians can offer our patients? Is walking blind into the unknown the most that we as patients should expect?
My answer to both questions is no.
Even with the most basic data gathering tools now ubiquitous to daily life — a pad, pen, smartphone, and spreadsheet — I was able to answer the questions that were most meaningful to me. Will my activity drop? Yes, at least 10% over the course of therapy and substantially more during the acute dose period. How much will my hemoglobin change? It will drop 30%, almost linearly by week, but you won’t feel it until half that much is gone (and those feelings will get much worse later). What about weight, sleep, my white cells, how I feel, and my hair? Well, you’ll lose 5% of your weight, on average; your sleep will go up substantially (napping, principally — don’t fight it); you’ll likely miss an episode of treatment because your white counts will be too low; your mornings will largely feel alright, but after that you’ll feel awful, with at least moderate nausea and discomfort, worsening week to week. Finally, you’ll almost certainly lose your hair, beginning right after the first dose.
Granted, I have the benefit of hindsight and knowing the course intimately. Scientifically speaking, the case of one patient is not enough for deep medical analysis. However, from experience I will tell you that even one case — the N of 1 example — is an incredibly meaningful starting point for a patient. How meaningful? If my care team had connected me to Future Me, or even someone remotely similar, it would have made all the difference. It would have simplified the information gap, creating the bridge between the known and the unknown — the most challenging part of living with cancer.
The author Brené Brown wrote that “…maybe stories are just data with a soul.” My soul is forever charred by the experience of surviving cancer, and my data is the story of that voyage. Knowing the objective attributes of patients when they are diagnosed and begin therapy, the treatment regimen and the probable outcome for the majority, largely curable disease like Hodgkin’s should be the starting points where we begin to fill in the uncharted experiential spaces on the modern maps of medicine. These are the questions that deeply matter to patients, and that we, as physicians and human beings on the same voyage through life, have a responsibility to answer.
