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.

 

Wednesday

At my house, Wednesday is bills night.

Every Wednesday night, faithfully, my husband sits down to pay all of our bills. We used to sit down together to pay the bills, but after the cancer diagnosis I kind of checked out. For more than a few weeks I was just too sick to sit with him. But then I just wanted to bury my head in the sand because most of the bills were my medical bills and there was a lot of sadness, frustration, and guilt wrapped up in my head when I would attempt to get back with the program.

Let's be honest. There still is. But it was time for me to jump back in, and as I said a few weeks ago, watching the Chicagonista LIVE! show about finances was the push I needed.

So, we are back to Wednesday night bills night with both adults in the house. I brought back the two spreadsheets we use to track spending and the last few weeks we have faithfully filled them out.

I still feel really unsettled when we work on it. I don't like it. But, it needs to be done. So I'm sucking it up, and jumping in.

Things aren't magically better (although, wouldn't it be nice if it worked that way?). But I think this is the first step to getting them better - tracking the money again, knowing where it is going, knowing what we can cut and what we need to spend more on, these are all really good things.

We'll see where it takes us. While I know it won't be a straight line up, I hope we can find a 2-steps forward, 1-step back, because at the end of the day, that's still forward progress!

Sharing

Phew. After yesteday, I'm pretty sure everyone knows where I stand on Pinktober. However, I do realize I'm not the only person in this world.

My story is not the only breast cancer story out there and my feelings aren't the only feelings people should have. That is why, this month, I have asked people to guest post here on the blog. I've asked them to share their stories with us - as a survivor, someone currently in treatment, as a caregiver, or a friend, or a family member. So many people have a story to share, and I'd like to take time this month to share more people's stories with you.

So watch over the course of this month as I share these posts with you! I can't wait. I'm excited about this! I hope that you enjoy it as well.

PS - do you have a story to share? I've got lots of room to share more, so leave me a comment with a way to contact you so I can share your story as well!

Pinktober!

It's that wonderful time of year! That time of year when the world looks like it has thrown up Pepto-Bismol everywhere. Ah yes, the lovely Pinktober, when the world is full of pink! And ribbons! And boobs!

Pardon me while I go and bury my head in the sand for this month. I'm over it. Guess what? I had breast cancer, I don't need to walk into my local stores and see nothing but pink to make me aware. My guess is, for most of you reading this blog (and most of America), neither do you. I've never met someone who isn't aware of breast cancer.

That's not to say, I know lots of people who aren't properly educated about breast cancer. But awareness and education are two different things. So are, frankly, awareness and action. And while all these feel good campaigns are out there to tell us that the 5 year survival rate has gone up (which is good, don't get me wrong), what they leave out is the deaths per 100,000 women has remained almost the same - in 1970, 28.4 in every 100,000 women died from breast cancer. In 2012? It was 26.1 deaths in every 100,000 women. Do you see this? Do you see? We've managed to save 2 women out of every 100,000 in 40 years.

Now, obviously this is awesome news for those 2 women. However, this is really terrible news for the other 26. Does this seem like progress to you? Are you happy with this?

Breast cancer probably gets the most attention. Especially in Ocotber, when we are inundated with messages about saving the boobs, save second base, etc, etc.

Well, pardon me while I tell you, I don't care about saving the boobs, tits, breasts, second bases, whatever name you want to call them. I want to save lives. I'm tired of pink everywhere, of boobs everywhere, all in the name of a cure that we haven't managed to find yet.

Do I seem angry? Yes. Probably because I've lost too many people to breast cancer and know too many more right now living with stage IV cancer. I've known too many people who are still dealing with side effects of treatment, who might not have cancer now, but worry about (not if) but when it will come back? Who look at their bodies and feel terrible about the scars, the implants, the lack of nipples. Who have to walk around the entire month of October and see boobs everywhere and hear about how we want to save breasts.

I believe the message started off innocently enough - bring people together, unite over a ribbon, but it seems lately it's been commercialized. Now I see products in pink with ribbons on the package, but read the fine print - the company isn't giving money to any group, they are simply making it pink, charging more, and hoping you'll feel so good about buying pink you won't notice they are pocketing all the money.

This is not to say that I am bothered by those who wear pink to support friends, family members, spouses, grandparents, mothers, daughters, sisters, aunts, etc. No. That is different - that is people coming together to show support. I love that, and I love stories about it. This is not what I'm talking about though.

I'm talking about ads with breasts and a nice little pink ribbon telling you to buy pink stuff to help the fight. Never mind the fact that they would never in a million years, allow the breasts of a breast cancer survivor to be in their ads. Because, despite the fact that many of us have implants, and people joke about how we got a boob job, our breasts are not pretty. They are not gorgeous. They'd never make the cut for an ad.

This is how October makes me feel. In talking to others, I know I'm not alone in this. {I also know some survivors embrace and love it}. I love people coming together. I love people wanting to do good in this world. I think as a society we could do this so much better - we could come together in a way where real education is shared, where actions take place, where October isn't just a month for companies to try to sell pink stuff.

That is what I dream of. That is what I long to see. Not more boobs. Not more meaningless pink stuff. Let's work on changing the mortality rate in big ways, let's work on coming together to make a big difference. I'm not sure how we do this, but I know we can.

How about you? How does Pinktober make you feel?

28.4 number in 1970

28.4 number in 1970

It was 28.4 in the same 100,000 women.

It was 28.4 in the same 100,000 women.

What I Didn't Know I Needed

tonight's moon taken by me

It's a Saturday night, just after midnight. I'm sitting on my couch, in jammies, watching netflix.

I'm exhausted. Yet I can't sleep. This isn't the first night recently like this. In fact, it's not the second or third or tenth. It is frustrating .... beyond frustrating. I'd like to call my doctor, actually I'd like to call all of them, and just say please fix me - make my body start absorbing things like iron, make the stomach and other digestive issues go away, make more energy come to me, just fix it all.

Of course I can't do that at the moment, so I muscle through it, because really, what else is there? I've got this amazing family that is counting on me to do a lot of things. And in general, I enjoy doing those things. But. It's. So. Hard.

I can't fix the physical stuff right now. I'm doing what I can - eating iron-rich foods and pairing them with citrus. I'm having my dairy not with my iron. I'm spacing my dairy to ease my stomach. I'm eating more soups because they are tolerated better. I'm resting when I need to. I'm sure it's helping, or I hope it's helping. But it's not fixing.

So I turn to the emotional side of things. It's hard to feel happy when you feel so broken.

But. But I don't want to be a downer. I don't want to be stuck - not in cancer-land (or I guess post-cancer land) or in the woe-is-me mindset. Because it's easy to be stuck there, for me at least.

And yet I'm not a sunshine and rainbows and unicorns kind of person. Or a cancer is such a gift! person. Or a my life is so much better now! thinker. (Nothing against those who are, it's just not me).

However. There is space in the middle. I can be happy, and still feel icky. I can have a smile on my face, but still think cancer is the crappiest "gift" I've ever received. I can spend a few minutes venting and then spend the next two hours laughing and talking about a million other things. This sense of balance - the good, the bad, the stuff that makes me want to cry with the stuff that just makes me smile, it's always been hard for me. It's been even harder the last few years.

I often feel that I need to be HAPPY and UPBEAT and ALWAYS SMILE NO MATTER WHAT!!!! This is definitely mostly self-imposed, though I see this pressure in the cancer community - just stay positive! And it's scared me from any sort of support group. We're supposed to talk about how cancer is gift and has transformed me into a wonderful person and now the whole world is a better place because of it. No, seriously, I went to a meeting once and this was how people talked. It was their truth (or I hope it was and no one was acting to fit in). The women fed off of it and seemed happy. I felt awkward and uncomfortable. I also wondered what was wrong with me, and why I couldn't do cancer "right" - the way those women were doing it. So I shied away.

Going on my First Descents Trip last month changed all that for me. It wasn't a support group per say. But it was. There was so much weight lifted off my shoulders. It was just people hanging out, talking, sharing - the good, the bad, the beautiful, the ugly. It was freeing. So freeing. When I came home I immediately told my husband I needed this here. On a regular basis. It was refreshing and wonderful.

So thanks to a friend, I got plugged into a local cancer group that was less traditional support group and more, hey get together and whatever. Tonight I went to my first group get "meeting". We met at a restaurant and just hung out. Lots of talking, lots of laughter and smiles, lots of sharing. I left feeling lighter. The world was not magically transformed but my brain felt recharged so my ability to deal with the world drastically went up.

I suppose we are a support group. Not one with a social worker or therapist leading it. Not one that meets at hospital or cancer center. Just people, coming together to hang out, and oh yeah, we all had or have cancer. And in that coming together, there is so much support. And some new friends. Who don't freak out when you talk about your nipples (or lack thereof) because some of them are like "ME TOO!" Before you know the whole tables is laughing over nipples, even the guys.

This is what I've needed. This is what was missing. I just didn't know it. I didn't know it until I was there and saw how perfectly it felt in my heart and head.

When I walked back to the car, I noticed the moon in the sky. Tonight's moon was gorgeous. A bright, big, almost full moon - complete with it's scars and craters, at home in the sky amongst so many stars. That's what I felt like. My scarred, imperfect self, hanging out with a bunch of stars. And it was perfect.