Tuesday, October 18, 2011
Sunday, September 25, 2011
I am generally an opponent of militarized language in my own life and the culture around me. I think that using war and battle metaphors erodes our sensitivities and normalizes the suffering of war. For these reasons and many others, I have tried to come up with a different framework for talking about my cancer, but at times, that has been hard.
Several years ago I read Susan Sontag's book, Illness as Metaphor, which I found to be an interesting and powerful critique of how many chronic illnesses have been addressed by culture and society, but the book was largely about the danger of the use of metaphor to describe illness. I have found that I needed to express how I was feeling to get through this experience. In order to express how I was feeling, I needed the tool of potent metaphor. But too often, I couldn't think of language absent of militaristic terms.
For example, in trying to describe my feelings just after getting my good test results last month, I had one clear image in my head; one truly effective metaphor. I felt like a General at the end of a war, who had been so focused on each individual battle that they couldn't see beyond what was right in front of them, now standing atop a hill and surveying the final battlefield, still coming to grips with the losses and successes, while a ticker tape parade waited at home. This metaphor captured the complexity of my relief, joy, grief and the intensity of the moment, but like so many of my metaphors along this cancer journey, is soaking with militaristic imagery.
A few weeks ago, an opinion piece appeared in the New York Times that dealt with this subject in what I felt was a thoughtful way, written by Daniel Menaker. As I continued to contemplate the ease and frequency with which I fall back on the use of this vocabulary, I was really interested in what he had to say.
Menaker opens his column:
EVERY day in obituaries, you will find combat metaphors about people who have died of cancer. "After a heroic battle against cancer," "valiant fight against melanoma" And so on. News stories routinely refer to "weapons" against the illness, the "arsenal" of drugs, "victories."
This line reminded me of something that Christopher Hitchens wrote in the first of his extraordinary columns about his cancer experience in Vanity Fair:
You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.
For so long, I have struggled to figure out why these combat metaphors are so common for cancer patients specifically, and why and how they have been useful for me over the years.
I'm not sure I'll ever be able to live with the military language around cancer that label me a survivor, a fighter, a victim; but I'm not sure I'll ever be able to fully describe my experience in the vacuum of such language. Menaker does a great job of explaining the utility of these terms. He writes:
But I also endorse the militarization of cancer talk. At least for some patients, and at least when they talk to themselves or those close to them about their situation. Because all of us are — by part of our nature — combative creatures, and it can be emotionally useful to view cancer as an enemy, even when you know it’s not.
It can motivate us to follow the often complex treatment regimens (regimens!) involved. It can help us feel less frightened and more composed when facing surgery. It can strengthen our resolve to stay in the best shape possible and to deal with pain when it comes. It may be a kind of self-delusion, but it may also assist self-preservation. And it may help others to face their illness with less fear than they would have had otherwise. There is nothing wrong with being emulable.
There’s a strong reason that cancer in particular tends to elicit warfare language: it is so radically territorial in its actions. That is, it’s usually trying to take over the physical space that is one’s body, just as a foreign army tries to take over one’s country. Also, try as we may, we cannot scour the language of metaphor. “Cancer” itself is a personification — well, a crustaceanification. A malignancy doesn’t know or care if it’s “mal.” It’s not evil. It just is.
Both authors also explain what does and does not work about these metaphors in their personal experiences. Hitchens writes:
Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.
When I read this, I breathed a sigh of recognition. These terms didn't feel wrong only because their source is in war and violence, they also made me feel disingenuous. Words like "brave" and "warrior" made me feel like a fraud. What is valiant about fighting (there's that term again...) for your own life? Survival is the most base, simple thing we're all biologically programmed to do. And my experience reflected Hitchens'; during treatment, you often feel anything but strong or valiant. Still, the question persists: what is a new metaphor or set of terms to use to articulate aspects of this experience?
In his article, Menaker says that he has found it useful to think of cancer as a "problem." He writes:
...it seems more calming, less victimizing, to think of the disease as a problem, not an enemy. A problem to be worked on, considered from this angle and that, and solved. Or just as if not more likely, not solved. But in either case not a malevolent foe who is going to vanquish or surrender to me. There’s no “volent” involved, after all.
I see his logic here, but I wonder if the term "problem" doesn't bring along its own set of issues. A "problem" is something that, with the right set of resources and the correct strategy, you are able to solve. There have been times when, in order to cope with the reality I was facing, I had to acknowledge that this might be a problem without a solution. And, does the notion of cancer-as-problem make those who do not live less effective problem-solvers? That just doesn't resonate with me.
My own shaky version of a solution to this larger question is to instead, try my best to think about cancer as a journey. A journey is neither positive nor negative on its face, but does bring with it the inherent positivity of forward motion. A journey doesn't imply a struggle per say, but does evoke the idea of stops and lessons along the way.
To reframe and make more accurate the metaphor of the General on the hill, I have sought out the right words to describe not the war, but the journey.
I think that the emotions of the past few weeks have been made more complex because of my embrace of the journey metaphor, but that in the long run, I am better off for that. It has enabled me to understand that this significant stop along my path is not the final one, not an ending of any kind, but rather a milestone to be celebrated and contemplated as I continue down the road.
Friday, September 9, 2011
As I conclude my recovery time here in Chicago, and plan to return to Washington on September 15(!), I have found my time divided between two main efforts. The first has been an on-going alchemy challenge with my doctor to maintain the right combination of medications - especially the three that do the job of striking the ideal balance between the donor graft and my own immune system. I have had some tougher days: some flare-ups of graft versus host disease that leave me tired and nauseous, followed by dosage changes that can be hard on my body. I've also begun to face the follow-up and fall-out from all these different toxins I have been necessarily exposed to. Seeing specialists to deal with permanent damage, and doing tests to compare baselines, is going to continue to occupy attention and time in my life, but it feels good to finally address some things that have had to wait to deal with until after treatment was finished. Mostly I have had good days, and feel like I have had the luxury of some time to organize and think ahead in a way that I haven't in many many months.
One of the manifestations of this new energy has been the second effort occupying my time and attention: a massive house-cleaning project that I've dragged my whole family into. While I was never destined to star on Hoarders, those who've been in my room in Chicago or my apartment in DC might characterize it as clean but cluttered. Piles, full shelves and sometimes brimming closets are my standard. If only you could see me now.
This instinct to purge makes some cancer-related sense. The desire to start fresh, to step up to all those things I'd been putting off when treatment had left me so exhausted and overwhelmed, and the urge to control my environment after years where control felt so lost, all seem like a natural reaction. But another byproduct of this mass cleaning effort has been a prolonged and sweet episode of "elissa froman, this is your life."
I've found items ranging from the hilarious (my 3rd grade school paper article polling the class on the ’93 Bush-Clinton election, a lot of pictures from my bowl-haircut days) to the telling (a VHS tape recorded off the TV that contained both Judgment at Nuremberg and Sesame Street Presents: Follow That Bird!) to the reflective (my first lesson plan as a religious school teacher, 14 years of hand-written cards from one close friend) to the once-thought-lost (favorite earrings from eighth grade, my first oil painting) and about everything else in between.
There's something surprising and poignant about how this cleansing expedition has turned out. As I feel a renewed opportunity to let myself look forward to my future, significantly less encumbered (though not completely free) by the "what-ifs" that have been present for so long now, I feel that this little protected period of time between the good news and rushing back to life in Washington, is an oasis. And having the opportunity to look back so deeply and thoroughly: reading birthday cards and book inscriptions; seeing toys, art projects and stories that bring back great memories; holding little landmarks of my past in my hands; has prepared me well for continuing to contemplate my future.
Monday, August 15, 2011
This message and a subsequently returned call to Dr. Gordon a few minutes later (two days before I was expecting results; what a mensch!) confirmed the best scan results possible. No activity on the PET scan and nothing on the CT except for some scar tissue in the location of the original tumor in my chest that started it all. No measurable cancer. My scans were clear.
It took me a couple of hours to move from the spot where I heard the message, returned the doctor's call, and took a couple of minutes to cry tears of relief, joy, and a blend of other emotions.
Having been elated by good news so many times, only to be crushed by the bad, it's hard not to scan the situation for all possibilities. But all here are positive. At a minimum, this sanctions my return to DC and buys me three months until my next set of scans. At the most, this is the beginning of a future clear of this burden, this hurdle, this medical, emotional and personal education that I didn't ask for but got anyway. A future full of choices and opportunities and the full range of human experiences that I'm destined to have. A future.
Since 100 days is a significant milestone after a transplant, (risk of acute Graft Versus Host Disease decreases, some medications can be adjusted, etc.) I will likely plan to return to Washington shortly after, in early September, with monthly visits to my doctor here in Chicago for awhile.
While I know that healing from a transplant is an involved year-long process and that I will not be proclaimed cured until I have five years of clean scans, I am hopeful those five years begin today. I am hopeful that the transition from being a person with cancer, to a person who had cancer, begins today. I am hopeful that I get to start writing a new chapter, beginning today.
Wednesday, August 10, 2011
Thursday, July 14, 2011
Until I started chemotherapy, steroids were just something that after-school specials had taught me to avoid (Bobby and Stacy, anyone?). But I soon learned that they are part of almost all Hodgkin's chemotherapy regiments and would be needed for many other aspects of my treatment as well.
Over these past few years I have had to take a lot of steroids, and a lot of Prednisone specifically, for a range of reasons: to suppress allergic reactions to a contrast dye required for my dozens of diagnostic scans and an allergic reaction to SGN-35, and most recently, as treatment for Graft Versus Host Disease. The Predisone has worked successfully in all of these cases. While I acknowledge with gratitude that the drug has been effective, it also gives me about every side-effect possible.
Up until now, I've had large doses of the drug, but haven't stayed on it for extended periods of time. So while the puffiness, weight-gain, charley horses, headaches, the yucky taste of the pill itself (my friend Amy plans to get rich someday by inventing a candy-coating for it), mood-swings and never-feeling-full-after-
I've spoken to doctors, nurses and friends, and taken to blogs, for advice on how to prevent/treat this latest symptom. I read that potassium helped, so I've been drinking coconut water, eating bananas and taking a potassium supplement the size of my pinky. I'm also taking magnesium and keeping tonic water beside my bed, since quinine is thought to help mitigate the symptom as it's occurring, but interestingly enough is only available in tonic water. I've tried stretches suggested in the blogosphere. I'd like to think it's helping a little, but ultimately I'm just looking ahead a few more weeks when I can hopefully be off of the drug completely.
Prednisone is one of the most prescribed drugs in the world, and is used to treat a huge range of conditions, so I know that many of you (generally empathetic individuals to begin with), can seriously empathize here. I know, from speaking to many of you, that Prednisone has been your best friend and worst enemy as well. If you have any tips on coping with Prednisone side-effects, let me know!
Besides these steroid shenanigans and a surprise virus and infection, the past couple of weeks since my last post have been pretty good. I've felt much more like myself. I've been able to feel pretty productive and spend time with friends and family without too much distraction from my medical challenges. And I've had a couple of positive check-ups with my doctor which confirm that the GVHD is under control for now and my blood counts are slowly climbing. I am past day +50 post transplant, and celebrating the milestones as they come. The next major step, and the scariest one of all, will be diagnostic scans sometime in August. These scans, which I haven't had since late March, are the only way to really see how the cancer is progressing or regressing (there are no blood markers the way there are with some cancers). Only then will we be able to know how effective both radiation and the transplant have been.
Friday, July 1, 2011
Thursday, June 16, 2011
Wednesday, June 8, 2011
So now that I'm home recovering, many of you have asked me: "what's next?"
I don't know the full answer to that question, but here's at least the short-term summary. Today I went to the doctor and learned that my counts are great and rebounding very well. I'll be seeing the doctor once a week and once a week (down from every other day) a nurse comes to my house to check my vital signs and to draw blood tests. Hopefully soon, that protocol will change to me going to a local clinic. Right now we're focused on balancing anti-rejection medications that continue to suppress my immune system, testing to see how the donor is engrafting through special blood tests (which I think begin next week), and managing any Graft Versus Host Disease. My doctor has explained that we want to see a bit of GVHD because it is also an indication that the new cells are attacking the lymphoma, but they don't want to see too much, as GVHD at it's most extreme can be fatal. This phase will last awhile - likely until day +100, at which point we'll repeat diagnostic scans to determine how this effort has worked. As of now, I expect to remain in Chicago throughout. I'm a bit hazy on the details of what happens after this, though at the end, the hope is that I'm cancer-free and ready to get back on track with my future plans.
Thursday, June 2, 2011
Monday, May 30, 2011
Thursday, May 26, 2011
I'd been giving the concept of mindfulness a lot of thought during my recent course of radiation, and decided to challenge myself. Given that I found that daily practice pretty loathsome, I decided to see if I could ritualize the 40-minute daily treatment process by being present and mindful through a mantra of sorts. The theory is that if I can be mindful when I most want to escape reality, in a challenge that I find physical and emotionally painful, I can apply the concept to other parts of my day and experience more easily. And that by ritualizing the experience, it provided some context and inner strength to stay physically still for so long and transcend the pain accompanied with doing so.
The mantra began to take shape about a week before I began radiation. Three friends and I went to hear the Wailin' Jennys perform live at a local venue in Virginia. My friend Emily, social media maven that she is, had been tweeting back-and-forth with their account on Twitter since we'd purchased the tickets months ago, and had requested a song. She'd also tagged the band, as well as all of us attending the show, on Facebook the day of the concert. They tweeted at her at some point that same day to let her know that because one of group members was a bit hoarse, the group wouldn't be able to sing this particularly high-note inclusive, specially requested tune. So we were quite surprised when, a couple songs into the second set of the night, the group dedicated a different song to us. Group member Ruth Moody explained that she had written the song in the hopes of being more mindful and worrying less, and they began to sing a song called You Are Here off their new album. A truly beautiful tune that stuck in my head, the chorus is:
Then I got to thinking about a couple of months ago when my friend Amy, a yoga instructor, taught me a Kundalini Yoga chant that aims to even breathing, decrease stress and help clear negative energy. She taught be to breathe in - Sa Ta and breathe out - Na Ma, and explained that translated from Sanskrit, the chant, satanama, means, "I am here."
These two concepts aligned well in my quest for a mindfulness mantra, but a piece was missing. There were three parts to radiation: three separate fields being irradiated. The third part came to me immediately.
In Hebrew, there's more than one than on way to say "here I am" or "here you are," but there are very select, special times in the Hebrew Bible when a term is used to define presence of a human being in their interfacing with God. So Hineini: Here I am, became the third phrase to focus upon during my attempt at a mantra.
By the final days of radiation, the mantra began as I lay down automatically, and in the days since then, I have continued to use each individual part, and the collective together, as I strive for mindfulness even in the hospital where it's easier to settle for the convenience of shutting down, and detaching from your awareness of yourself as institutional practices inevitably diminish your sense of individuality and self.
So I'm trying each day to remind myself: you are here, I am here, here I am. And I'm getting through it, slowly and one day at a time.