Thursday, October 03, 2013

Remembering a Friend

Lisa in 1995
Today I have the pleasure of sharing a piece written by Lisa. I know Lisa through twitter where we both participate in the weekly #BCSM chat (BCSM = breast cancer social media). She is a lovely person and I am honored to share her moving piece with you today.

Lisa Guttman Greaves was diagnosed with cancer in both breasts in 1994 at the age of 31. Finishing treatment in 1995, she has had no evidence of disease since that time. You can connect with Lisa on Twitter at @LGG1 

Remembering a Friend 
by Lisa Guttman Greaves



Breast cancer awareness month. October. Pinktober. Reflecting on recent virtual and in-person discussions about “the culture of pink,” metastatic disease, and the meaning of survivorship has caused me to think a lot about my friend Donna. Donna died from metastatic breast cancer more than 15 years ago. I would tell you the year, but I don’t remember. Not because I didn’t love her, but because my memories from that time have no relationship to time measurement. They operate like a psychotic accordion, stretching out some notes to torturous lengths—and flattening others to bare nothingness. 

I met Donna in a breast cancer support group at the hospital where we were both being treated. We had a major bonding moment when it came to light that we suffered the same, seemingly uncommon, side effect from chemotherapy—extreme nausea while showering. Such is the stuff of friendship development in the cancer world. Some of the women in our group acted somewhat maternal toward me as a 31-year-old; Donna was probably 20 years older than me but we felt no age distance. She was someone I could always relate to and laugh with.

Donna and I grew even closer as our treatment paths took us in a similar direction. We both had very aggressive tumors with poor prognostic characteristics, and we both made the decision to follow our “standard” courses of chemotherapy with high-dose chemo with autologous stem cell rescue (AKA bone marrow transplant or BMT). The high-dose chemo is lethal enough to kill your bone marrow, disabling your body from producing new blood cells. The rescue comes by way of stem cells, in my case my very own cells that had been harvested for this purpose. 

(A note: this was in 1995, when it was largely believed, though not clinically proven, that this treatment had the best promise for staving off recurrence in certain types of breast cancer. Clinical evidence ultimately did not bear this out. I have more to say on this topic, but not in this post.)

So when I entered the three-room BMT unit at the hospital, Donna was already there. She was so awesome to me; she knew the ropes and shared all kinds of intel. I knew my incessant coughing was keeping her up every night but she never let on. Donna was a person who could be cheerful, encouraged, and encouraging in the darkest of times, which this was. Let me be clear; she wasn’t a crazy, cock-eyed optimist ignoring the reality of her cancer. She was honest and knowledgeable.

I have never felt so alone in my life, in my fear—even while supported by incredible, loving family and friends and first-rate medical care—as I felt in that BMT unit.  I was alone with my disease. And that’s when it happened.  A thing I’m ashamed of to this day.

I became jealous of Donna. I mean REALLY jealous. Wickedly jealous. She used the treadmill they brought into her room. She had moments of positivity. She welcomed her friends to come and visit her.  I went on inconsolable crying jags. I lacked the energy to watch TV. I finally believed I had cancer. I scribbled in my journal: “I have a paranoia that everyone is judging me because I’m not handling things as well as Donna. I want to be the patient that everyone says what a great job they’re doing.” I added wallowing in guilt to my plentiful and growing list of side effects. It amazes me looking back that my desire to be the “good patient” wasn’t wiped out along with everything else the toxic treatments took. 

It was only a few days later that I wrote (quoting DH Lawrence’s poem Snake): “ ‘Now I have something to expiate—a pettiness.’ Donna is going home today and I’m so happy for her. All of my horrible competitive feelings are gone." I remember the day Donna left. She came in my room and excitedly told me that you’re not allowed to vacuum for six months after getting out of the hospital; she was planning to milk that for all it was worth. We laughed about how careful we were going to have to be crossing the street because we sure as hell didn’t go through all of this just to get hit by a car leaving the hospital. She told me she was going to try to get permission from her doctor to go to Race for the Cure.

Donna was the first of my friends to die from metastatic disease.  When I went to her funeral, which was packed with friends and family sharing stories and reminiscences, I realized that as well as I knew my dear friend, there was a world separate from her cancer that I had no part of. Obviously I already knew that on some level, but seeing it in person was astonishing and kind of thrilling. Donna’s best traits were increased exponentially in her total self; I could see this mirrored in the countless people I talked to that day. I think of you, Donna, every time I play a music box.

I think of Donna, too, every time I hear someone say to me “If anyone could beat cancer, it was you” or any of those other similar things that we survivors hear from well-meaning people who don’t—or won’t—understand that that’s not how it works at all. I don’t just think of Donna. I think of all of those friends I lost in those first few years post treatment as I came to feel like a professional funeral attendee in my early 30s. I think of so many women I subsequently met and talked to after they were diagnosed. I think of my friends and community members currently living with metastatic disease.  The overwhelming offense I take at anyone ever thinking or implying that these people didn’t do enough, care enough, or be positive enough rocks the very core of my being. I know Donna would feel the same way.
 

5 comments:

  1. Absolutely - we do what we can, and that is enough. Now let's have the research catch up! (I cheer with each possible advancement and real breakthrough that is made.) Thank you for sharing a little glimpst of Donna's story. ~Catherine

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  2. Your glaring honesty makes this entry quite beautiful.

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  3. Anonymous8:40 PM

    Lovely reflection and honesty.Thanks for sharing this-really helpful for patients,carers and me, as a doctor.

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  4. Hi Lisa,
    This is wonderfully honest, poignant and beautiful. And I completely agree it's offensive when it's implied that someone who has died from mbc didn't fight hard enough. Thank you for sharing about Donna. And thanks, Brandie, for featuring Lisa's guest post!

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  5. Beautiful and raw. Thank you for sharing.

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Seeing your comments makes me smile! Thank you so much =)