What's been going on?
- November 13, 2020: I conclude another round of chemotherapy at the Seattle Cancer Care Alliance (SCCA). My hematocrit is low, but being told that a blood transfusion is my choice, I opt not to get one.
- November 18: A blood draw shows my hematocrit is even lower, so I receive a unit of red blood cells the following day.
- November 30: Meeting with my oncologist, my counts are still a bit low. She recommends we delay chemotherapy one week, which will provide the added benefit of being off chemo at Christmastime. My creatinine, a metric of kidney function, is 1.69, but my oncologist says that as long as I'm not experiencing any symptoms, there's no need to intervene until it reaches 2.0.
- December 7-11: Another round of chemotherapy. My creatinine on Monday is 1.82, the highest it's ever been and alarmingly close to the 2.0 mark my oncologist mentioned. I am given an extra hour's worth of hydration each day, though my care team assures me my creatinine level is not due to a lack of drinking water.
- December 16: Victoria changes my nephrostomy dressing, and the pain is intense. We send a picture of the wound site to my care team at the SCCA who forwards it to the University of Washington Medical Center (UWMC) who requests I come in for an ultrasound.
- December 17: The ultrasound is uncomfortable as it involves some pressing on my abdomen area where the bulk of my tumors reside. I experience a lightbulb moment when I read the description of my history as "Metastatic DSRCT." I don't think I realized until this point that, prior to starting chemo a year ago, my cancer had already metastasized. I take comfort knowing it hasn't metastasized since starting chemotherapy.
- December 25: Feeling intensifying abdominal pain and even some kidney discomfort Christmas evening, I take my first painkiller in nearly a year. I feel better pretty quickly.
- December 26: The gauze at my nephrostomy site appears soaked/stained with pus. I e-mail a picture to my care team at the SCCA.
- December 27: For the first time outside of an in-patient stay at the hospital, my legs (especially my right one) swell. We manage it with elevation and compression socks.
- December 28: CT scan of pelvis, abdomen, and chest at Kaiser Permanente. For the 90 minutes I'm required to drink the oral contrast fluid, Victoria and I are permitted to leave the clinic and enjoy a walk around Volunteer Park.
- December 29: Sending a more recent picture of my nephrostomy site to my urologist, they arrange for me to come in for a rapid COVID test (#...13?!) at UWMC in order to give me moderate sedation the following day after chemo for a nephrostomy tube change.
- Morning of December 30:
- Regarding the swelling in my leg I experienced a few days before, my oncologist recommends an ultrasound as a standard precaution to rule out a blood clot, which I am at an increased risk for as a cancer patient.
- He says that the radiologist at Kaiser has identified some tumor growth. Reviewing my scans with us, he argues that due to the amorphous and shifting nature of Desmoplastic Small Round Cell tumors, he might describe them instead as "more prominent," and indeed, with some help, even my untrained eye can see the dark shading on the scans where the tumors are pressing on my liver and taking up more space in my pelvis. On a positive note, there is stability in other tumors (such as those in my chest) and no new tumors have appeared.
- He suggests we switch to a new chemotherapy, Pazopanib (puh-ZOH-puh-nib), a pill I will start taking every night as soon as possible instead of proceeding with the previously scheduled chemotherapy. We will need to wait for my insurance (Kaiser) to approve the pill and for the pharmacist to fill the prescription. We'll start the pill at a half-dose (400mg) and monitor how manageable the side effects (fatigue, nausea, diarrhea, rash, etc.) are and how my counts (red and white blood cells, etc.) are affected before increasing to 600mg and hopefully eventually a full dose of 800mg ("Some people can have the full dose and feel pretty okay, but they're more of the exception, not the rule"). Among other side effects, it may turn my hair white, perhaps permanently. My oncologist says patients typically can get this treatment for four to six months before the cancer stops responding to the chemo.
- This leads me to ask for a prognosis — what happens after four to six months? He lists a handful of other treatments that will be available to us off the top of his head, and says I've done very well with intense chemotherapy treatments. "A lot of people say they've been through a lot," he says. "You really have." "It's impossible to say for certain," he says, but my prognosis is six months to a year.
- Afternoon of December 30: I get my nephrostomy tube changed, and they increase the size of the tube from 8mm to 10mm to try to make it a more snug fit within the wound.
- January 5, 2021: We meet with a nephrologist for the first time at UWMC. The big takeaways are that my December 17th ultrasound showed the cortex of my right kidney (the one with the nephrostomy tube) appears to have atrophied, but my left kidney appears to work perfectly well. He gave the analogy that it's as if I am an otherwise healthy 31-year-old who has donated one of his kidneys. He encourages us to reach out to him for consultation as needed with any kidney or nephrostomy tube-related questions we have.
- January 7: Ultrasound of right leg at the SCCA to rule out a blood clot as the cause of swelling. Like with the previous ultrasound, it's an uncomfortable procedure for the part where they press on my pelvis where tumors are located.
- January 9 to present: Started taking Pazopanib. Little to no side effects so far, an encouraging (if premature) sign.
What's coming up?
- Start taking blood pressure daily at home to track trends. If we see increased blood pressure, I'll be given medication to help manage it.
- January 23rdish: Go into the SCCA as needed for blood draws or other tests to monitor my body's ability to tolerate Pazopanib.
- February/March: Nephrostomy tube change, CT scans
How are you doing?
I am, as always, ambivalent: lots of tears, lots of laughter. Victoria and I have an explicit ethos to try to allow for a range of emotional expression; it's just that in light of the appointment with my oncologist on the 30th, there have been lower lows and higher highs. I am sad, frightened, worried, and anxious as I contemplate that I will likely die within the year. I am joyful, grateful, peaceful, and glad as I think about how wonderful my life has been and continues to be. In many ways, I feel as though I'm living "my best life," meditating/praying, doing yoga, walking, writing, reading, connecting with Victoria, family, and friends.
Luckily, I just so happened to be doing a lot of logistical and emotional preparation around death. In my Dungeons & Dragons campaign with my siblings, my character died unexpectedly, and I suddenly found myself rehearsing death with my brothers and sister. Moved by a participant experiencing a tough prognosis in Young Adult Cancer Support Group, I finally spent an afternoon reviewing the Episcopal Diocese of Olympia's Life Planning Manual and Death With Dignity's Five Wishes documents. I've started outlining "Loving Letters" to leave for immediate family members.
I didn't start doing these things because I thought death was imminent but because it had sunk in that inevitably we all will die, and it's important to me to have these things in order before that happens. I am determined to outlive this prognosis. I want to finish the book I'm writing, to see my nephews grow up, and for us to grow our family. I've come to realize that I'm not afraid of death, at least not in a way that causes me to lose sleep. I trust that when death becomes imminent, healthcare professionals will keep me as comfortable as possible and that God will handle the rest. It's not that I fear death, in other words; it's that I want to live. In a phone call, a priest at St. Mark's Cathedral said that it sounded like I've "been differentiating between grief and fear."
It's a helpful exercise in mindfulness to remind myself what is real and what is not. The tumor growth is real; the prognosis is not. Starting a new chemotherapy is real; the list of potential side effects is not. I'm looking forward to working with a death doula (an additional support resource to supplement therapy, spiritual direction, clergy, support group, yoga, and palliative care) not because death is imminent but because when I do inevitably die, I want to be as prepared as I can be.
How can we support you at this time?
I love feeling connected and hearing from folks. If you comment, e-mail, text, etc., thanks in advance for your understanding if I'm slow to get back to you. It's the greatest comfort to know that I am not alone.
What's your prayer for yourself?
This is the question my spiritual director asks me at the end of each of our sessions together. Most recently, my prayer was that I can find moments of lightness, humor, and joy in this time.
Last month, my prayer was that I take to heart the refrain of "Do not be afraid." Doing a Theological Reflection with my Education for Ministry group around Christine Valters Paintner's poem, "Please Can I Have a God," it struck me that my desire to lean into mystery and the unknowable may be somewhat at odds with my desire for confidence and strength, my yearning to be assured. Thomas Keating writes, “Powerlessness is our greatest treasure. Don’t try to get rid of it. Everything in us wants to get rid of it. Grace is sufficient for you, but not something you can understand. To be in too big a hurry to get over our difficulties is a mistake because you don’t know how valuable they are from God’s perspective, for without them you might never be transformed as deeply and as thoroughly…”
People sometimes say that they are petitioning God in their prayers for my "wholeness," or to "fix what has been broken." I tend to balk at this. Yes, I have cancer, but I believe I am still nevertheless whole and don't think of myself as broken.
This growth and accompanying prognosis has brought me back to square one. In many ways, I feel as uncertain as I did back when I was first diagnosed. So much of the sentiment I've gotten from loved ones and felt myself has been about hope, and I'm once again struck by Keating's wisdom:
“To hope for something better in the future is not the theological virtue of hope. Theological hope is based on God alone, who is both infinitely merciful and infinitely powerful right now. Here is a formula to deepen and further the theological virtue of hope with its unbounded confidence in God. Let whatever is happening happen and go on happening. Welcome whatever it is. Let go into the present moment by surrendering to its content … The divine energies are rushing past us at every nanosecond in time. Why not reach out and catch them by continuing acts of self-surrender and trust in God?”