A Year of Immunotherapy, A Lifetime at the Cancer Center

February 4, 2019 by V.R.M. - No Comments

i want to live so densely. lush. and slow.

in the next few years. that a year

becomes ten years. and the past

becomes only a page. in the book of

my life.

               nayyrah waheed

 

This post has been hard to write, not because there is something particularly terrible to report, but because I have been unable to find a tidy way to end it. There is typically only one “ending” to the story of being a melanoma patient, and many events in the life of one. What those of us who live with cancer can always count on is another doctor visit, another test, another reminder and more bad news waiting around the corner. Someone trying to look on the bright side tells us, “a few years ago everyone who’d walk in for melanoma would be dead within the year.” A new doctor greets us with, “you look better in person than on paper” (how is that a compliment?). Someone in a movie dies of cancer and people around her become unhinged, and we know everyone around is wondering what it’s like to see our possible future projected on a screen: Here I am, but here cancer is, too. All these reminders tear me down, but over the last year and a half they have also trained my capacity to rebound and come back to living the life I want faster. Yes, I do fall into dark days where I worry how much longer I have to live. But for the most part, I come back to the now, to my girls, to the love of my life, and to this life I love so much. I live.

Prologue

September 2018.

Goal: I will run a half marathon with my “new old body,” as I’ve come to call it, and I will continue to reclaim my life from cancer. Nothing is the same yet everything is. Whatever happens, I will toe the start line, and however long it takes, I will cross that finish line.

At the Seawheeze Half Marathon race start.

On the first day of autumn, after a year in a clinical trial, I ran a half-marathon. I don’t know if it was the sixth or tenth or twelfth half I have run (I don’t keep track), but that particular race, the SeaWheeze, is my favorite. It takes place in Vancouver, one of the most beautiful cities in the world. Thousands of runners line up for the start as DJs blast music, volunteers dance, and crowds holding the funniest signs (yes, it’s long and hard – but who said that was a bad thing?) cheer. The race ended up being more of a rainy run-walk for me, but I was elated. Crossing that finish line was the perfect way to celebrate the freedom that came after completing a year of cancer treatment and having no current presence of disease. Some months before, back in Spring, the spirit hadn’t been quite as celebratory.

August 2017.

I had often imagined what my last immunotherapy treatment at the U.M. Cancer Center would be like. After my appointment with the oncology team, I’d walk in to the infusion suite carrying baked goods for the group of kind nurses I’d gotten to know over the past 12 months. A nurse assigned to me would start an I.V. in my left arm (just in the right place so I could continue to work on homework) and saline would drip while we waited for the pharmacy to deliver the pembrolizumab. We’d talk about her kids or his band-director wife and the middle-schoolers she taught. Once the drug arrived, one nurse would take my vitals while another typed in various numbers, matching the drug to the code on my patient bracelet. I would repeat my last name, first name, and date of birth several times as nurses checked the drug and dose. The pump would go on, and for about 45 minutes, Keytruda would drip its way into my bloodstream, working its invisible magic against any stray melanoma cells in my body.

I say invisible* because for duration of my treatment at the Cancer Center, neither I, nor the oncology team, nor the nurses had any way of knowing whether the immunotherapy treatments were working or not. My stage III cancer diagnosis had been based on a recurrence of melanoma on the scar where the original lesion had shown up in 2011, and based on the fact that the previous melanoma had been removed with clear margins, doctors assumed cancer cells had begun their trajectory toward other places in my body.

For the most part, the ten months of treatment were not too terrible. I’d show up at the hospital every three weeks for a blood draw and 45-minute infusion. For the first three months or so, I got a headache and sluggishness that felt like a hangover along with an upset stomach. Symptoms eventually settled into a perpetual dry mouth and thirst for the next 6 months, so I carried a water bottle everywhere, just like everyone else at the University of Michigan. My treatment appointments lasted about three hours, and for most of the infusions I got, I worked on papers or homework. At the end of the treatment, I was usually in good enough shape to go to work. Unless I’d told you, you wouldn’t have known I was spending a day at the Cancer Canter every three weeks.

Another one (this time for a CT scan).

To monitor possible metastasis, every three months throughout the year-long treatment, I’d chug the berry-flavored (and barf-inducing) Redi-Cat radioactive solution and lie down for a CT scan of my neck, chest and abdomen. In the process, I got to know my body in a most intimate way, literally from the inside out. While I generally love information, I wasn’t as excited about what the radiologists would see in those scans, like the spot on my liver (most likely nothing!) or my one slightly-larger ovary (is the other one jealous?). I learned that my veins were “rollers” and started to bring my own arm warmer to avoid the CT nurses having to try to start my IV 4-6 times, leaving my arm bruised in the process. Over the year, the endless waiting in the freezing-cold recesses of the hospital basement, where all the fancy scanners with spinning parts and magnets generating heat and noise are kept, became my least favorite part of the treatment. But thankfully, each CT scan found no visible signs of cancer in my body.

There were side effects, of course: I was tired all the time and had trouble waking up and I didn’t quite feel like myself. My stomach was a mess. My skin was dry. But knowing there was an end in sight made everything bearable, and each treatment got me closer to the final one. As February came around, I could see the light at the end of the tunnel and figured I’d be one of the lucky people I had heard about who breeze through treatment. But this race was not going to end the way I envisioned it.

November 2017.

Things were going so well, in fact, that a few months into the treatment, someone had told my girls that their mother “didn’t even look sick.” Just as cancer was invisible in my body, my disease and its treatment, too, were invisible to most people. When your hair doesn’t fall out and you don’t look ill, people don’t see how cancer and its treatment become the uninvited guests you are forced to live with. My normaldays often involved struggling to wake up, breaking up a morning fight between my adolescent daughters (for whom life was immediate and endless, as it should be), dropping them off at school, and heading right over to school, work, or the Cancer Center, where people were facing how brief life really is. Living in these parallel worlds of life and death was surreal.

***

The Cancer Center waiting rooms are the place where class, origin, and education level all blend unwillingly. Intermittent phone sounds break up the whispers and silence and tell a story about their owner.  At the blood draw area, there would routinely be a man in Hells Angels regalia, chains and all, sitting next to a woman wearing her mother’s pearls. A Burberry jacket next to an old, tattered coat. Infinite kindness, but also impatience and frustration. A husband accompanies his wife but only speaks to her when absolutely necessary, in short and clipped sentences, while another teases his by saying, “hurry back – you know I can’t do this part for you,” as she steps away to use the restroom. Some days, the room looks like the DMV: so many numbers drawn, so many people waiting, no one too excited about getting their number called.

In this place, pain is everywhere: in the faces of husbands pushing their wives in wheelchairs, in the thin frames with numbers in their hands waiting for blood draw, and in the people crossing fingers and saying prayers for good news. We are all in the waiting room because we’re trying to make this stop, hoping the ghost will never come back, admitting that it is time to let go, or holding the hand of someone who is. I hate what this disease does to the humans sitting in the waiting room with me every three weeks. This uninvited guest wears me out, makes me dark and worried, breaks my heart. It makes me wonder “how much longer do I get?” way more often than you do.

***

One time, on the same week I had an infusion, a client arrived for crisis counseling complaining of insomnia. After a while, the client revealed their mother was dying of metastatic melanoma and they were exhausted from caring for her and unable to grieve her loss. Here was potentially my daughters’ future. Your mother is dying and there is nothing I can do. There is nothing I can do.

***

Even if we beat this, in survival our bodies are left marked by cancer’s visit. My colleague, who has survived several rounds of chemo, shows me her arms: “so hairy,” she says, “they didn’t used to be this way, but when it grew back, it was like this.” For all of us, scar tissue covers the once soft skin in the fold of our elbows, now a roadmap of countless access to our veins. Our sexual selves, too, changed; some of our bodies struggle to balance the desire hormone cocktail while others are prematurely turned to the “off” position. And at the core of it all is our inability to mourn for all these losses because, hell, the alternative would be so much worse. We’re supposed to be ok with letting go of all these things no one has to think about – hair, sunshine, sex, food, staying up late, being naked without scar self-consciousness, tingling hands. And our partners, in turn, are forced to live a life where their maladies shouldn’t matter because cancer is so frightening it eclipses their every possible fear and complaint.

Sometimes I look at my body, and everything I’ve put it through this last year – the needles, the IVs, the medication, the endless appointments — and I am amazed by its resilience. But it is getting tired, I can tell. The aging that once happened in a gentle progression happens in leaps each time I walk through the door at the Cancer Center. My skin thins and becomes brittle. I grow more white hair. This cancer business makes me feel old and tired. All of this is what you can’t see when you bump into me at the soccer game, when I don’t “look sick.”

***

But within all that death and fear, there were beautiful days, too.

While cancer may have tried to isolate me, connecting with people throughout the year of treatment helped me feel alive. Learning the name of the receptionist at the 1stfloor melanoma clinic made the check-in feel more like a visit. Chatting with another patient in the waiting room and sharing a laugh over turning Fox News off (we don’t need any more stress in our lives!) made the waiting more tolerable. Developing a two-way relationship with the oncology team changed the experience radically for me. Over the course of treatment, women and men with impressive degrees and qualifications became Diane, Susan, Chris and Raad. They shared details about their lives, their families and their interests, making the endless clinical trial appointments something I looked forward to rather than dreaded. We talked about why they decided to go into medicine, oncology and endocrinology. We talked about growing children and upcoming grandchildren, trips, relationships, what it was like to be a cancer patient and what it was like to care for cancer patients. They answered countless emails and rescheduled endless appointments to ensure I could fit life in between cancer. The kindness of every receptionist, nurse, and clinician made the Cancer Center tolerable.

P, a dear friend made at the School of Social Work.

At the University of Michigan School of Social Work, where I was completing the final year of a masters in social work (MSW), my classmates brightened my life with their youth and energy, while classwork kept my mind engaged and focused on subjects other than possible outcomes and side effects of cancer treatment. If at first the idea of completing the MSW while undergoing cancer treatment seemed impossible, the reality was quite different. There was so much work to do for the masters – the good kind – that I had no time to ruminate about cancer too much. A few times people asked me how I could do so much, but in all honesty I wished I could have done even more.

I want to do it all. I feel like I am on a sprint to do it all, try it all, get it all done before this ghost comes back for me. Before I have to go back to that place.

March 2018.

Last March, as I was starting to see the clinical trial’s finish line, things started to change. Symptoms that had once been manageable crept up: I started feeling incredibly sore all the time, regardless of my activity level. My joints ached and my hands swelled. I stopped wearing my engagement ring and wedding band, afraid I wouldn’t be able to take them off one day. The “hangover” mornings returned, making it difficult to get up to get myself and the girls to school. My head ached constantly. I was barely exercising because I simply couldn’t. I’d try to go for a walk, but would get too dizzy to even make it to the end of the block.

On visit 14 of the 17 scheduled, so close to the finish, I was asked to report side effects. Almost every one the oncologist read, I had. Dizziness. No energy. Nausea. Soreness everywhere. Swollen. Loss of appetite. Blurred vision. The oncologist suggested skipping an infusion and adding it at the end, but I just wanted to be done with it. Do it, I told him. I sat in the infusion chair, head leaning on the wall, and the nurses mentioned I looked unusually tired. I figured it was school. I had the infusion, and I went to work. And then I got even worse.

It’s interesting how when we experience long-term, slowly worsening symptoms, we forget who we used to be and how we used to feel. Ill becomes the new normal. And if you are one of those folks who “put their head down and keep working,” you are probably as terrible as I am at acknowledging that it is time to call uncle. In late April, it was taking me close to two hours to get out of bed. When I cooked meals for my family, I barely ate a bite. The weather was improving, and as C and the girls tossed the football back and forth, I’d sit on the front step watching them play because I had no energy to participate. Our old dog, Lucy, declined to the point where we had to put her down, and when the vet walked out of our house with her soft, lifeless body, I cried until there were no tears left.

May 2018.

On Mother’s Day, after I struggled to make it through the manicure my husband gifted me (my hands hurt so much I couldn’t stand to be touched) and I couldn’t keep my celebratory meal down, I wrote a tidy little email to the oncology team listing my side effects and telling them I was done with the trial. They responded by telling me to come to the hospital right away to get IV fluids and tests. Turns out my pituitary, thyroid and adrenal glands were pretty angry and had decided to quit before I did (I can’t blame them, really). A few hours later, with the help of 3 bags of fluids and a hefty dose of prednisone, I slowly started to come back to life, and there was relief – but there was intense sadness, too.

Over the following three days, I shed ten pounds, and what some would celebrate left me frightened. For the first time in my life as a cancer patient, I looked sick. I was pale and my eyes were sunken and rimmed by dark circles. My skin was grey, dry and flaky. The ring I couldn’t wear weeks before now kept sliding off my finger. The reflection in the mirror and too-big ring gave me a taste of the end, when we shed tokens of life’s milestones as our bodies give out and we wait for death. I caught a glimpse of something none of us ever wants to see.

***

As I recovered, I was grateful to feel better, but I was also angry at my failing body. I had gone into the treatment a fairly healthy 44-year-old and submitted to a drug’s clinical trial based on the statistical probability that cancer would most likely grow and kill me. And here I was a year later, steroid-dependent, anemic, ringing ears, unable to run a mile without walking, and on daily medication. I would have to come to terms with the fact that I would most likely never return to the woman I was before treatment. I would probably get used to having to take meds daily, and learn to accept being less fit. But it will be it would far, far harder to reframe the way in which I always envisioned myself to match the person my disease had transformed me into.

I have forty plus years invested in setting high demands for myself, body included, and old habits die hard. When I found out my health was failing, I wasn’t sure I could be compassionate toward a body that refused to live up to my expectations – even the modified ones. Intellectually, I know life is dynamic and ever-changing and I am lucky to be alive and living so near a cancer center that was able to provide $150,000 worth of experimental medication to me free of charge via a clinical trial. But soon after the abrupt end of treatment, I was angry I had drawn this fucking lottery number that meant I’d gone from being fit and listing “no medications” to needing a pillbox and a med alert bracelet.

***

When I hear the terms, “warrior” or “survivor,” it pisses me off. Those labels romanticize a cataclysmic life change that none of us have a damned choice in. I am neither. I am just here, living, because I love this life so damned much and I don’t want to be robbed of it. I love how beautiful it all is and I don’t want to miss a thing, so I push myself. And now I have to live with the fact that my body just told me I can’t push any harder or run any faster, no matter how hard I try.

***

Some days, it seems ridiculously privileged to feel sorry for myself when so much works so beautifully. I am lucky to have a husband who was (and is) incredibly supportive. Lucky to have a boss who allowes me to work whenever, however, and never hesitates to send me home if I looked a overly tired or sick. A community that sacrificed time to make meals for my family when I couldn’t and still takes the time to listen when frustration surfaces. It seems so self-involved to worry about my body’s changing identity when I am still here, while a friend lost her own fight to stay alive to parent her little boys. But it still happens. It’s happening today, as I write with aching hands.

Life is such a multi-faceted adventure, isn’t it? Within terrible things lie wonderful discoveries. Within what appears perfect, lies lurking discontent. When we identify and express our frustration, we can leave it behind and move toward our “new” life. As people with cancer, we should be allowed to care about superficial things like outfits, a TV show, a 5k run, or a favorite meal because worrying about everyday things indicates normalcy. These things create the life that we call ours, and engaging in them fights how cancer takes life away from us: slowly, in seemingly insignificant ways.

Life, again.

With the ladies of TVT motorsports and C at MidOhio.

A week after I quit the clinical trial and was given a hefty dose of steroids, I felt well enough to instruct and drive on our car club’s first track day of the season. My husband’s support has always manifested in his tireless efforts to keep our life going with the utmost consistency even as it kept getting thrown off the rails, and this even was no exception. He prepared the car, got it to the track, filled it with fuel and left it ready for me like a tempting dessert, devoid of pressure. And tempt me it did, my car. I hopped in to drive – tentatively at first—testing out my sore hands and sense of balance to see if I could make it work. Before I knew it, I fell into the familiar rhythm where the world falls away and the prayer-like trance of driving happens. It was so goodto drive. So good to put all the frustration, anger and fear of last year and leave it behind with the rubber I shed on track. So empowering to trust my body, in its aging and ever-changing shape, to perform behind the wheel. I could feel myself in doing what I loved in every lap and I felt alive. At the end of the day, I went home and made shrimp tacos for my daughters, and we ate them while they told stories of their day and their life, where time is abundant and life is lived in the moment. Time slowed down for me too, and I lived.

Epilogue.

Time passes, and life continues to morph. Over the last couple of months, there has been even more change and more collateral beauty.** It has been seven months since the trial ended and I’m still learning how to be a new person in my old life. There are days when I am frustrated at having to slow down because my body is tired and full of aches, or sick of wondering what the magic formula for feeling well could possibly be. I’ve had two scares to date – one set of mysterious spots on my head that appeared and disappeared before I could show the doctors, and a questionable set of scans – and I know they won’t be the last. There is so much “wait and see” in being a cancer patient, and so many “could be” moments. I know now that with every false alarm, I’ll have to revisit my fear of dying and wonder how much longer I have with my girls and my husband. Living with cancer is exhausting.

Vancouver with the love of my life.

But cancer also makes you fearless and less prone to time-wasting. My girls are talking about high school and boys and learning to navigate social interactions, and I am grateful to be here for the everyday hormonal moments many dread. Last track season, after years of driving conservatively, I pushed my limits and posted my fastest laps at Grattan and MidOhio. Over time, my body has gotten stronger and filled out, but instead of hearing the mental background noise about “getting too heavy” I’d heard for the majority of my post-pubescent life, I hear nothing at all and simply love the fact that after everything, my booty and I are still here. I am unsure if I’ll ever manage to run distance again, but every mile and workout to date has been a cause for celebration. While 5 a.m. wake-ups and early morning runs are a thing of the past, I’ve found an 8 a.m. strength-training group that encourages me, keeps me accountable and makes me laugh. Those white hairs on my hairline? I stopped plucking them and welcomed being 46, smile lines and all. I feel like I lived a lifetime of experiences over the last year, with emphasis on I lived. I am afraid, but I am alive.

 

 

 

*There was one strange way in which I knew the immunotherapy was working on my immune system. All around me, people caught colds, flu, etc. – and I never did. It was both strange and awesome.

** The movie Collateral Beautyis worth watching.