Friday, June 10, 2016

Back to chemo

In life, there are things you can change and things you just have to find a way to make it through.

I think modern American culture tends to make meaning in life mostly out of the first: we measure ourselves by the difference we made, the things we chose and accomplished. We tend to see the other things, from minor inconveniences to major problems, as distractions on the way to building the lives we want. A successful life is one where we finish the things we wanted to get done.

It seems to me, though, that older cultures--preserved in part through our religious cultures--take another view. While religions call for plenty of personal and community change, they seem to treat being alive as its own important challenge and to place significant value on learning to endure life well. A good life means more than the luxury of accomplishment: a good life is learning to carry a difficult world with some kind of grace.

I'm a modern American. I like to choose my path and make a difference. My religion has also given me more of a vocabulary and tool set for thinking about what it means to endure well, but it's not a skill set I have traditionally wanted to spend too much of my time and attention developing.

That is changing.

Last Wednesday, I got discharged from MD Anderson Hospital in Houston after five days of intensive chemotherapy. It was the first cycle in a new set of treatments, planned for the rest of the summer and into the fall, which are supposed to make up for the failure of three months of chemo early this year to finish the job. By the time I was let out of the hospital, I felt the familiar, insistent sorts of gross I've come to except: twenty-five pounds of retained fluid weight and three days of delayed bowel movements pressing down on my guts, numbness and tingling from damaged nerves in my feet making my steps strange, head a little dizzy and body more than a little weak.

I was not thinking particularly philosophically at the time. Just paying attention to the strangeness of my body and trying to get out of the building. Even through the fog of physical unease, I felt a patient's sort of gladness--a mixture of muted excitement and profound relief--to be going home. Since my house is maybe two thousand miles away from the hospital, "home" in this case meant my cousin Manju's house,* a more than welcome place to spend my two weeks off before the next round of treatment. And I felt all kinds of grateful to have my little sister Judith in town to help me do all the little things a patient is supposed to do, if also little embarrassed that our quality time together had, thus far, mostly consisted of her watching me lie around and moan or else shuffle around and moan.

It was raining on our way back: first gently, then in quantities that triggered flash flood warning text alerts. We made it back home just fine, despite the Houston monsoon, and I made it through the night OK, peeing off maybe ten pounds by morning. By Thursday a little before noon, I remember sitting on a couch and feeling surprisingly decent. For the first time in days, I could actually breathe deep and just think.

I looked over at my sister. And then, without any warning, I started to cry. I felt totally overwhelmed and intimidated; just beaten down by the prospect of going through all the troubles and uncertainties of treatment again.

I'd been fairly patient through my prior months of chemo. I'd done a good job accepting it with a mixture of humility, humor, and really boring but important discipline. And yet, with a moment to think ahead, all that experience didn't feel like enough to carry me through again--especially given that the coming rounds are likely to be significantly physically harder.

It was after the panic that I got philosophical. Looking back, I think I've made it through cancer treatment before, both after the initial diagnosis in 2008 and the discovery of a metastized tumor in November of last year, by framing it mostly as a distraction.

As soon as I suspected I might have testicular cancer in 2008, I read about outcomes and focused my attention firmly on the 95+% survival rate. By the time the doctors gave me my diagnosis, I was already willing to think of this as something to go through on the way to other things. It was the same when doctors confirmed late last year that a colony had survived in my digestive system and decided, after seven years of keeping a low profile, to try to take over. I was fairly intimidated by the intensity of the coming treatment, but quite confident that after a few months of disruption I'd be back to my goal-driven life. "It's not going to be fun, but it is going to be fine" became our family motto. We were able to endure by looking for the light at the end of a not-too-long tunnel and pushing through. 

Then came scans in March and April that showed half of my tumor is left, wrapped around the main artery to the liver. It turns out to be an important artery, so surgery was out as anything but a last ditch option. It turns out more chemo, first in higher doses than I've had and then in higher doses than I could survive without a transplant of my own stored stem cells, is the best treatment option. The percentage chance that I will be fine is still quite high--probably in the upper 80s to low 90s--but given the length of treatment, it's getting hard to see cancer as a distraction I'm holding on through. It's starting to feel like this is my life for now.

 And maybe, as far as making meaning out of life is concerned, that is an acceptable thing. Maybe the work of learning to carry this difficulty is an important part of my time living in a body on earth.

I am trying to move forward with that mentality. Whatever I can endure, whatever I can learn, whatever humor I can find in absurdity and whatever beauty I can find, as it were, in ashes--those things can be my milestones.

It's been ten days since chemo.

One day I made it out of the house to walk and stood under a canopy of trees. This is my life, and it is good.

One day while lying on the couch, I watched my nine-year-old cousin Jasleen put together a puzzle of the presidents and told her stories of Ulysses S. Grant's bad driving and John Quincy Adams' secret to eavesdropping in the House of Representatives. This is my life, and it is good.

One day, I vomited and swore through the morning then felt good enough by 1 pm to go to church. I asked two men I barely knew to bless me, and they spoke not only with comfort from the Holy Ghost and eyes for eternity, but also about my two-thousand-miles distant children and the comfort I could be to them even in the midst of the stress my pain caused them. This is my life, and it is good.

One night, I woke up with a fever high enough to need to go into the hospital and did so despite my distaste for hospital stays. They found that my absolute neutrophil count (normal=1,500 to 8,000) was 6. I braced for a stay of many days. This is my life, and it is good.

One night, I struggled to ignore neuropathic pain in my feet, digestive pain, lower back aches from the hospital bed, fever, and body-wide exhaustion to finally get some overdue sleep. For hours, I failed. I started to wonder if the universe is really worth its suffering. I tried to pray, and failing to find words, settled for crying out in my mind, again and again, the single word "father" until I fell asleep in the midst of my many pains, the sharp sensation of ice against my neck dimming other stimuli just enough to let my mind go. This, too, is my life. And it, too, is good somehow.

 One night, having had more sleep and knowing my white blood cell count was improving, I took advantage of the hospital time to watch an NBA playoff game. The players danced across the court and in a few consecutive possessions seemed to execute each play flawlessly. I let my eyes follow them, then let my eyes rest. I felt proud to share a world with such mastery of a craft. Sometimes, findings ways to be grateful for this world is my life. And it is good.

*Manju is actually my mom's cousin, but is close to my age. Being from an older generation than me, she's happy to take on the role of overprotective auntie when needed. Because we remember playing as kids together, though, there's also a nice feeling of shared experience and comforting closeness. It's a great combination.


  1. James:

    I have re-read this post for the third time this morning. It is insightful and moving and thought-provoking in some unexpected ways (like much of your writing).

    It reminds me of this by Emily Dickinson (called "Part One: Life"):

    If I can stop one heart from breaking,
    I shall not live in vain;
    If I can ease one life the aching,
    Or cool one pain,
    Or help one fainting robin
    Unto his nest again,
    I shall not live in vain.

    Brett in Welfare

  2. I wish you the very best. God bless you. I hope your treatments continue to blast the hell out of the cancer and you are soon home with your family. This post made me weep and at the same time, made me glad I know somebody with your strength and faith.

  3. I too have been inspired to share your resolve, patience, insight, hope, faith, family, and pain... only through your writing. There is great comfort in knowing that "be still and know that I am God." To only say father over and over and over... well it is enough.

  4. Praying for you and your family, James.

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