Reflections from Medical Prison

Here I sit the day before my stem cell transplant after 6 days of chemo, in a sterile room with linoleum floors and an endless cascade of medical waste in the form of plastic wrappers and alcohol swabs.  Everything about me is manufactured for a specific purpose, which should be patient comfort, but even small talk often seems to stroke the egos of medical staff.  I’ve been knitting a sock, like any regular, unconfined person may do, and at least twice I have been told that I need to sew some grips on the bottom.  It doesn’t even occur to the medical professionals that my entire life is not centered around the BMT clinic.  First, even if I wanted to only wear socks around the hospital (I do not want all those cleaning products sticking to my feet) instead of slippers or shoes, I’m only planning on being here for another two weeks or so.  What an insignificant amount of time to spend in one place, for the expectation that I’ll be around long enough to need grips on my socks!  Another problem I have with these types of off-hand remarks is that it robs me of my youth, as “older” people are the ones with “Fall Precautions” outside their doors.  I’m 23, clearly able-bodied, and don’t have to give into the “sick cancer person” vibe the nurses seem to cherish as they experience some inauthentic altruism in their day-to-day work.

I reread the above paragraph and question: am I ungrateful?  These doctors, nurses, waiters, housekeepers, and pharmacists are all employed on the basis of treating me, and curing me, of a cancer I never asked for.  The lack of empathy people have about patients’ loss of control is disheartening.  I attended a “wellness group” yesterday where about 5 people and the recreational therapist introduced themselves and then made inspirational collages from magazines and the patterned plastic scissors you last used when you were 7.  My collage ended up with a brilliant photo of Barack Obama pointing to bleeding hearts, which I think is a clever double entendre for my own liberal ideals.  The words “love,” “hope,” and “encourage” may help my fellow patients (who were all over 50) reflect on how to get through their own suffering, but fall emptily on the ears of a young person who maybe hasn’t given up yet.  I wish the staff could see my will without me having to tell them hollow facts about myself, though maybe we’re all striving to feel more compassion, and I don’t know these people either.

Words and Tones

What haunts me in the dead of night is often not the grim possibilities of never-ending cancer treatment or how soon I will be able to return to work, but the insensitive comments I am bombarded with.  Cancer is mistaken to be a disease reserved for the elderly, with the occasional childhood leukemia tragedy, so I am not surprised that people misstep socially around adolescents and young adults with cancer.  There are unique, concrete challenges for our age including financial and parental dependence, however, I have found that social interactions require a higher degree of nuance too often overlooked, as I hope to show you.

While I feel immensely supported by my friends and other young adults, something I have encountered as a young person with cancer is that older adults fail to take me as seriously as they would somebody their age or older.  There is a pervasive belief that young people know and understand less about the world because they lack “experience.”  A crucial part of supporting a young person with cancer is respecting her as independent, and recognizing that she is in some ways more experienced than an older, “wiser” person.  There is no greater insult than to be told that someone understands what I am going through, in any sense.  An older couple had the audacity to attempt to convince to me that they “certainly do understand my situation,” which stripped me of dignity and portrayed their ignorance.

A different type of comment that infuriates me is seemingly innocuous remarks about things I have lost: health, hair, fitness, and a plan for the future.  While you technically can tell me about how you’re in the best shape of your life, or how you’re having such a hard time growing your long, flowing locks from 3 inches past your shoulder to 4 inches past your shoulder, I highly advise against it.  To me, these types of comments signal a lack of social awareness and are at best falling on deaf ears and making me feel uncomfortable.  As if I didn’t already feel like enough of a genetic failure by having cancer in my early 20’s, the treatment is harsh and leaves me feeling physically weak and unattractive.  It is courteous not to flaunt the unobtainable, defining characteristics of a healthy young adult in front of those of us who lack them.

A foolproof rule of thumb is to never, ever ask someone what her prognosis is.  When asked what my prognosis was upon relapse, I felt like little more than a statistic, and that the person that asked merely viewed me as a pawn in their narcissistic worldview.  If you really are that curious, you can look up the statistics yourself, but please don’t indicate to me, ever, that you’re thinking about the prospect of my possibly impending death.

On another note, pity feels like forcing me to down a “drink me” potion, reducing my humanity to that of a helpless child trapped by the uncontrollable.  The following excerpt from a card I received, despite its well-meaning intentions, actually made me more frightened for my outlook upon relapse: “My heart aches for you… I love how you have explored languages!”  I felt like I was attending my own eulogy given the past tense, and the enormity of emotion only served to overwhelm me as I thought, “Is it really that bad?  Should I be more scared?”  The essential element to include in any card aimed at young people with cancer, specifically those with a good chance of being successfully treated, is unfaltering optimism.

Semantics are generally overlooked, yet may also profoundly affect any young adult as they have affected me.  I rarely refer to myself as a “cancer patient,” as I feel the word “patient” is dehumanizing because above all I am a person.  A human being who had a life before cancer and who struggles daily to prevent herself from being defined by her health struggles.  Words often associated with cancer such as “warrior,” “fighter,” and “battle” imply that people with cancer have some degree of control over the success of their treatments, which is not the reality.

The simplest advice I can give to facilitate conversations with adolescents and young adults is this: be respectful, and genuine.  We are forced to confront our mortality at a time in our lives when society tells us we are invincible, fearless, limitless.  When this construct crashes down around us and shatters, we can feel vulnerable and nearly everything feels like a personal attack, an affront to our new approach to life.  I hope that this post either enables you to more deeply support a loved one with cancer, or help you, as a fellow young adult, to know that your thoughts and feelings are valid.

 

ICE Treatment 1

Since ICE is used as a salvage chemotherapy regimen, most of the people with Hodgkin’s only experience the front-line regimen ABVD.  I haven’t found much online where people discuss the timeline of side effects in-depth, so here is my experience with ICE:

Day 1, Wednesday:  Check in at 11:00 am, start chemo at 10:00 pm.  You might be wondering why I didn’t start chemo for almost 12 hours, and I honestly don’t have an explanation.  Apparently it takes some time for the bloodwork to finish, and some time to make the drugs, but this wait seemed extensive.  I did one hour of etoposide and then I stayed on IV saline throughout the night.  For those curious, my pre-meds (drugs given to prevent nausea) were Zofran and dexamethasone.  I also had a thiamine (vitamin B1) injection every six hours during my stay.  Since it had been about 9 months since my previous chemo, ABVD, I was nervous and requested ativan, which calmed me down.

Day 2, Thursday:  I remained on saline throughout the day, then did another hour of etoposide from 10-11 pm, one hour of carboplatin from 11 pm-12 am, and finally ifosfamide (mixed with Mesna to protect the bladder) for 24 hours starting at roughly 1 am.  My potassium was low, so I needed an infusion at some point this day as well.

Day 3, Friday:  I was on ifosfamide throughout the day, then at 10 pm I had one hour of etoposide concurrently with ifosfamide.  Then I was completely finished with chemo at about 1 am that night!  Yay!  Unfortunately, they left me hooked up for a few more hours because I needed magnesium.

Day 4, Saturday:  I managed to poke and prod at the nurses and doctors enough over my stay to convince them to discharge me at a reasonable time.  I left the hospital by 10:00 am and proceeded to take several naps throughout the day.  Throughout the stay my appetite was normal and I didn’t experience any nausea, which is great!  I maintain that one of the worst side effects is constipation, which I experienced starting on Day 2, continuing until maybe Day 6.  This time around I stayed more on top of things, taking senna and colace twice a day from days 2-6, which worked well enough, though I needed Miralax on Day 3 because I was terrified they wouldn’t discharge me if everything wasn’t running smoothly.

Day 5, Sunday:  I was also sleepy this day, taking several naps and just generally not doing much.

Day 6, Monday:  This morning I woke up and felt like death, or like I’d been hit by a bus.  I could hardly stand up without becoming lightheaded, so I ate an English muffin, drank some tea, and then started to take my pills when I threw up.  Ew.  I napped some more, woke up, ate a slice of cheese and again, threw up.  This time I was smart enough to take a Zofran, so I finished taking my pills with some milk and managed to keep that down.  I got my Neulasta shot, a granulocyte-colony stimulating factor (G-CSF, used to boost white blood cell counts), and some late-afternoon tortellini alfredo from Panera and felt pretty swell for the rest of the day.

Day 7, Tuesday, and on: I’ve noticed very few side effects throughout the rest of this 3-week cycle, other than the obvious – hair loss.  Beginning day 14, a few extra strands of hair fell out in the shower until Day 17, Friday, the day my head looked like a horrible cross between George Costanza and Gollum, so on Saturday my tolerant and supportive husband shaved the rest of my hair off.  I have purchased a couple of head scarves from Etsy, which I am very excited to wear during my lengthy, impending hospital stay.

In my spare time (which is all my time as I have successfully evaded any semblance of responsibility by having cancer), I have knitted a travel coffee mug sleeve and am looking forward to starting a lovely periwinkle Chantilly lace scarf.  I’ve filled my weekends by watching professional League of Legends games and Letterkenny.  I’m hoping to soon work up the motivation to finish my metal model of Big Ben and have been contemplating starting a Twitter account where I attempt to paraphrase sections of Road to Reality, which sounds about as difficult as actually understanding the laws of the universe.  For now, life is good as long as I can keep my mind off my own mortality.

 

Relapse and Cancer Blogging

After a relapse scare in October, meaning that a biopsy of my lymph node came back negative, I confidently entered my oncologist’s office in February thinking that surely my enlarged lymph nodes were due to something less sinister.  I was, to say the least, surprised to hear that indeed my Hodgkin’s lymphoma had returned, and of course devastated that I couldn’t go on living my life like I never had cancer.  Just when I had begun to embrace my pixie cut and arduously train for the Tar Heel 10 Miler, it felt like a rug had been ripped out from beneath me.  I broke down later the next evening, lying on the carpet and believing my only purpose in life, in that instant, was to knit kitty blankets (like, tiny blankets I can drape over my cat when she is sleeping).  I have, despite this, developed more reasonable coping mechanisms, though I am still unsure if unrelenting optimism is the way to go.  My treatment plan is to do 3 cycles of ICE (ifosfamide, carboplatin, etoposide), which are each 3 weeks and require a 3-day inpatient hospital stay.  After evaluation including a PET scan, heart and lung tests, and a bone marrow biopsy I will then be able to proceed to an autologous stem cell transplant (SCT), which essentially replaces all of my blood and bone marrow with my very own stem cells that were collected previously.  After all of this, I may either enroll in a clinical trial for CD30 CAR-T cell immunotherapy, or use the more well-researched brentuximab vedotin targeted chemotherapy to prolong remission/increase chances of a cure.

I couldn’t have more eloquently stated the following: “I never wanted to be a cancer blogger, because I never wanted cancer” by apainintheneck.  It’s true that nobody wants cancer, but I already have it, so I might as well talk about it!  I spend most of my free time lurking about the internet, occasionally “liking” posts or reviewing restaurants, yet I’ve been increasingly perturbed by my lack of content creation.  I’ve always been “the quiet one,” but I’d like to put myself out there in the world, and this seems like a great way to do it.

One thing I have noticed among the lymphoma forums I peruse is that there is brief discussion of day-to-day life during Hodgkin’s lymphoma relapse, specifically ICE and autologous SCT.  First, this is fantastic as there are relatively few people who have a Hodgkin’s recurrence.  Second, this is frustrating for me as I can’t anticipate side effects as well as with ABVD, the first-line chemo regimen for Hodgkin’s.  I’m hoping to use this blog more often in the future (if my post history is any indicator, I would post 3 times per year) as a venue to inform people of my experience with cancer and chemotherapy.  If I have learned one thing over the past 15 months, it’s that every cancer story is different.

 

Truck nuts: Anthropomorphizing your vehicle two testes at a time!

Anybody who knows me well knows I have a dark, self-deprecating sense of humor.  The absurdity of testicles hanging from the bumpers of trucks does not fall into the category of things I find amusing.  The irony of attaching male genitalia to a vehicle often paired with stickers portraying conservative values including “the right to bear arms and kill helpless animals for fun” and “support the troops who enforce our ignorant xenophobia” is certainly not lost on me – aren’t these people generally staunchly homophobic?  I was under the impression that balls are the most objectively ugly body parts on a human being, so could someone please explain to me why this company is marketing this eyesore?  More importantly, I want to know about the people that proudly parade giant plastic nutsacks (or upgrade to chrome… so luxurious) around town.  Who are you and what compels you to assault my eyeballs with your truckballs?  If anybody could shed some light on this disproportionately right-wing American phenomenon, I’d certainly appreciate it.

Moving Forward

Today, I took a step forward in putting my experience with Hodgkin’s lymphoma behind me.  My port was removed expertly and painlessly, a symbol of hope and survivorship, regardless of what the future may hold for my health.  I hesitate to center this blog around my “cancer journey,” since I’d hate for my every action to be scrutinized based on preconceived notions about what a cancer patient should be.  A few weeks into treatment, binge-watching The Unbreakable Kimmy Schmidt in bed, I heard truer words that couldn’t have hit closer to home.  For those familiar with the show, Titus perfectly explained to Kimmy his fascination with her unfortunate predicament.  Titus believes there’s a part of each one of us that feels comforted seeing strangers experience tragedy in one form or another because we can be thankful for the positive aspects of our own lives.  Though of course our empathy compels us to feel deeply and terribly for these strangers, their awful tragedies didn’t happen to us.  And why would they?  We’re young, beautiful, healthy.  It pains me every day I look in the mirror at my unintentionally short hair to realize how naive I was.  Being confronted with my own mortality jolted me awake and showed me the truth about who I was: an elitist, but more importantly, someone who was no better than anyone else.