Posts Tagged ‘healthy people’

Lance Armstrong, Susan Komen, and Me

01.20.2013

I have had variations on the following conversation ever since I finished treatment:

convo

 

I know this does not make me popular. I know some of you reading this find me coarse and unnecessarily harsh.

But you how no idea how much pressure there is to be inspiring after cancer.

Perhaps if my initiation into CancerLand had not involved losing somebody dear to me, I may have taken up this mantle and done my best to own the Heroic Survivor story.

But I came in to my diagnosis with the rawness of losing my brother, lending me a take no prisoners attitude against cancer.

I always wanted to know the goriest details. I had no romance for this experience. My oncologist marveled about me early on in my treatment, “You have no denial mechanism.”

So what does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?

Like my brother, Susan Komen died at a young age. Her sister Nancy Brinker famously promised™ to help put an end to breast cancer.

I empathize greatly with the young Nancy. I know firsthand the impotence we feel as we watch somebody we love die. I understand the appeal that her organization holds, particularly for those left behind who want to do something in the wake of so much helplessness.

In becoming a legend, Susan Komen ceased to be a full person. Instead she became a symbol for her sister’s wish. Who knows what Susie was really like, since her persona has been carefully crafted by her surviving sister. (Twitter is haunted by a ghost who begs to differ with Nancy’s account of her love of pink and shopping).

Whatever the truth once was, Susan Komen has become the Noble Patient who gave her sister’s life Greater Purpose.

Then there is Lance Armstrong. Like Susan Komen, he was diagnosed with cancer at a young age. Like Susan Komen, he faced Stage 4 cancer. He not only managed to achieve remission, he became a paragon of health, winning the Tour de France an astonishing seven times.

Lance Armstrong became a legend. He beat the unbeatable, the Ultimate Survivor, becoming an inspiration to many who donned yellow bracelets and hoped to be half as lucky as he.

Many of these same people felt betrayed this past week as Lance finally admitted to doping to bolster his performance.

I was not among them.

Personally, I had long seen the limitation in his story as an exemplar: testicular cancer is one of the few cancers that is reversible at Stage 4. But details like that don’t matter in hagiography.

So while I am grateful to Livestrong for drawing attention to survivorship as a phase of cancer with its own needs for medical attention and social support, I am not heartbroken to learn that Lance’s feet are made of clay.

Lance’s legend, like sweet Susie’s, has put undue burden on plain folks like myself whose path to recovery is neither straightforward, triumphant, or full of Hallmark Channel Movie inspiration. (My friend Xeni wryly calls the saccharine survivor genre “cancer porn.”)

Lance, it turns out, is all too real. I am sure Susie was too. Lord knows her sister Nancy is.

So, Well-Meaning People, this is the answer to your question:

My life was rich before cancer took my brother from everyone who loved him.

I had gratitude before I had to go through almost two years of devastating treatments from which I am still experiencing side-effects, social, emotional, financial, and physical.

Am I humbled by my friends’ love for me? Absolutely.

Have I redoubled my commitments to be there for others in their time of need? Undoubtedly.

But, really, Well-Meaning People. This is just a deepening of what already existed for me.

If cancer were eradicated tomorrow, life would still provide plenty of adversity to remind us about what counts.

 

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Posted in Survivorship | 19 Comments »

Not Normal

09.30.2012

Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.

In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.

I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)

This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.

I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.

To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.

It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.

It’s the usual working parent juggling act, only performed on a tightrope.

As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.

My work folks mostly seem to understand. My family mostly seems to understand.

The place I have had the hardest time is in parent communities.

Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.

The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.

But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.

As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.

The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.

At the most convenient moment, I made my exit.

On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.

With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.

I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.

And, as of now, that is not my case.

 

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Posted in Survivorship | 10 Comments »

Marking Time

07.26.2012

With no big medical events on the calendar, I am, in many ways, more normal than I have been in almost three years.

But yet I am not.

I don’t need to rehash the combination of fatigue, lymphedema, fogginess, and trauma I have been left to sort through. I’ve covered that mess already.

If I am not my Old Self and I am not a Cancer Patient, who am I?

For instance, I like to think of myself as reliable. Right now I am not.

Will I ever be again?

Much of recovery involves managing expectations, both my own and other people’s –– and on an uncertain timeline.

It’s not easy. Sometimes I have focus and energy. Sometimes I don’t. Sometimes I have pain and exhaustion. Sometimes I don’t.

I have not found any predictable rhythm to it.

I have been trying to make room for this uncertainty: don’t overcommit, stay forgiving of my limitations. Let myself rest, bow out. Listen to my body.

Stay realistic, despite the ways I am champing at the bit to get back to that magical land of How Things Were.

Take myself off of a set timeline, let things unfold as they may. People call it a New Normal, but there is nothing normal about it.

If my wellness were the only uncertainty, maybe I could manage to make space in my life for this to work itself out.

But there is that other shadow in my life, the fear of recurrence.

With odds somewhere between 20 and 30%, most breast cancer patients cannot ignore that reality.

It’s a haunting and existentially impossible situation:

What if I give myself time, stay gentle in my expectations, and I get pulled up short again?

How do I let Time Heal All Wounds when I am Racing Against Time? When life may pull another fast one on me and the clock may abruptly stop?

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Posted in Survivorship, Wellness | 17 Comments »

The Surgery Which Must Not Be Named

08.07.2011

The date is now set for the first of my reconstructive surgeries. As has been my custom, I sent out a dispatch to my support people to inform them of the date and some of the needs my family and I will have.

But you know what I forgot to include?

What the surgery was for.

I got some concerned notes from friends, wondering if I had experienced a recurrence or morbidity from earlier surgeries. Was I BRCA positive? Was this an oophorectomy or hysterectomy?

As regular readers of my blog know, I usually lay things on the table medically. I am not typically coy about what goes on.

This omission was interesting. Why had I suddenly become so uncharacteristically shy?

Blogger friend Stacey has written about how awkward it is to discuss reconstruction –– sometimes even with your doctors.

Luckily, I have felt very comfortable with my docs.

Family, friends, and colleagues… well that’s a different matter.

Part of it, I think, is that people are not as presumptuous about the “correctness” of other phases of cancer treatment. When you tell folks you have to have chemo, the skeptics may, at most, ask if you had a second opinion. But once you assure them of your diagnosis, they only offer sympathy.

Breast reconstruction becomes infused with opinion. Political opinion. Medical opinion. Cosmetic opinion.

While not everybody states their views outright, they find ways to insinuate them into conversations.
I am familiar with this dynamic. It reminds me most of the kind of indirect (and sometimes quite direct) judgments I felt in conversations about childbirth and breastfeeding.

For this reason, I am going to provide here my personal answers to the FIQ’s in conversations about my choice to pursue reconstruction.

What are FIQ’s?

I just made them up.

Frequently Insinuated Questions.

So here goes.

Why don’t you just embrace your new body?

Yes, this is the body that let me live. But it is also a body of trial and grief. It is a body that reminds me of what I have endured every time I dress and undress, every time I wear a swim suit, every time I hug. My happiest post-treatment moments are ones that do not foreground my cancer experience. I would like to have more of that pleasant amnesia around my body itself.

I have been told by more than one person about women who embrace their mastectomied bodies by tattooing their scars. Cool on them. When people stare at you, you have given them something to look at, have changed the meaning of the stare into, “What an awesome tattoo.” I think that’s great.

But it doesn’t work for me. Aside from not being a tattoo person, I am not a candidate for tattoos, between the extensive radiation and the lymph node dissection which leaves me prone to infection. I sometimes get the feeling that I disappoint people by not being a badass tattooed survivor.

Why would you want to endure more surgeries?

I have my reasons. Of all three events in the Triathlon from Hell — chemo, surgery, and radiation — I tolerated surgery the best. It seemed to be the one place where my prior fitness paid off.

I don’t want  to endure more surgeries. But cancer often forces you to choose between crappy options.

The best preparation I have had for this aspect of cancer treatment is a game I played with my brothers growing up. We would pose gruesome hypothetical scenarios and ask each other to justify our choices, like, “Would you rather freeze to death or be burnt alive?”

Other women may not experience it this way, but for me, choosing between my mastectomy scarred body and more surgery is one of those would you rather scenarios with no right answer. Choose your pain: the accretion of small psychic insults for the rest of your life, or intense, short term suffering for a physical approximation of what you have lost. On the balance, my personal answer, after much self reflection, is that I would rather endure 9 months of surgery.

I do not judge other women for making different decisions. I wish I did not feel judged by others for my choice.

Why didn’t you just get reconstruction when you had your mastectomies?

If I had insisted, I could have. My radiation oncologist told me clearly that it would risk compromising the treatment and it would make for a lesser cosmetic outcome. My priority during treatment was to save my life. I figured I would deal with the cosmetic aspects at a later point, once I knew that is what I wanted to do.

The surgeons at my hospital recommended waiting 12-18 months for my tissue to heal after radiation. Delayed reconstruction has been psychologically hard, but the morbidity rates are lower than reconstruction on radiated skin. In some ways, it has given me an opportunity to live with a mastectomy body and have a clear sense of my own feelings about that. I will not have to wonder how it felt.

Are breasts really that important to you?

Growing up, I had a friend who was born with noticeable asymmetry in her face. Nobody questioned her and her family’s decision to get plastic surgery for her when she got old enough. Faces are part of how you present yourself to the world, how people see you and interact with you.

Later, my friend Josh had part of his arm removed to treat sarcoma. He wore a prosthetic initially, but found it cumbersome and finally decided to let everybody deal with their discomfort around his missing body part. He used humor to help put people at ease, like about the particular danger he would pose if he texted while driving.

So where do breasts fall on the spectrum of body parts? Do non-conforming breasts socially require surgical correction, the way that we all understood my friend’s facial surgery?

I imagine breasts fall somewhere in the middle, and different women answer that question differently.

Here is where I land. I don’t like choosing my clothing around my surgery. I don’t like the extensive strategizing I end up doing when it comes time to change in the locker room. I don’t like the sinking feeling I get every time I undress, no matter where I am. I don’t like the feeling of cuddling my children with prostheses.

I have spoken with enough women who have made different choices to get a sense of the trade-offs. I have no illusion of “becoming whole again.

But I have listened to other’s stories, and I have spoken with my doctors about the medical realities.

I know of a woman in her 40s who enjoyed swapping out different sized prostheses –– or wore none at all –– to suit her fashion choices and activities. I know a 90 year old woman who had a radical mastectomy in the 1970s who told me she never felt comfortable with her modified body. I know a small-chested BRCA positive woman who got prophylactic mastectomies without reconstruction and felt surprised at how much she missed having breasts.

There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me.

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Posted in Survivorship | 56 Comments »

Personal Worst

07.05.2011

Since I finished treatment, I’ve been a half-marathonin’ fool.

I ran the NYC in March with a childhood friend.

I ran the Nashville in April.

This is one of those race photos they try to sell you. Hehe.

I took May off, but was back at it again in June, this time in Seattle.

Me and my Seattle running buddies. They stuck by me the whole way.
Interesting Fact: We have 10 kids between us.

 

How do I explain this marathoning madness? Simple. I know myself.

When I asked my oncologist what I could do to minimize my odds of recurrence, she said, “You will hear a lot of things. But there are only two things we know for sure. Exercise regularly and keep yourself to your lowest healthy weight.”

I am a compliant patient, but I knew I would be even more compliant with these goals on the horizon.

So that’s that. I don’t want the cancer to come back. Plus there are added bonuses.

When I run regularly, I feel better. I’m more confident in my body. It’s the only time I actually enjoy my booblessness.

Vigorous exercise marks a clear before/after for my treatment. I couldn’t run during treatment because of my extreme nausea and pain. Now I can.

Running helps me combat post-treatment fatigue. I sleep more deeply and have more energy when I’m running.

Running is an individual sport but runners compete against themselves. “To PB” is a verb — it means to get your personal best time.

So I thought that by running three races in four months, I would PB by the end.

I was wrong. I PW’d.

That’s right. I got my Personal Worst.

I’m not one for excuses but I do like a good story, so here goes. Pull up a chair and stay awhile.

Devoted readers of my blog may recall that I started an experimental use of an old medication, Metformin, in early May to prevent the cancer from recurring. My oncologist reassured me that any side-effects would be short lived. She obviously forgot she was talking to the side-effect queen.

I was so nauseous, I ended up back in bed most evenings. My doctor told me to take Zofran, the big guns anti-nausea drug. It only kind of helped and heaped on new side effects like dizziness and constipation. It was one thing to endure those when I could lie in bed all day during chemo. But I’m trying to hold down a full time job and raise a young family here.

I tried cutting my dose in half, reasoning that taking some of the drug was better than none of it. They had to back off on my chemo dose because of my bad reactions, so why wouldn’t I do the same thing with the Metformin? When the nausea persisted, diabetic friends offered suggestions. Cut down on your carbs. Take it with meals.

I tried all of the above, to no avail.

Worse yet, the nausea and related fatigue started to cut into my running. Exerting one’s self while dizzy and pukey is highly unappealing. As I pulled back on training, I started losing some of the ground I had gained in my wellness. I went from feeling better to pretty bad again.

The morning of the Seattle race, I took my medicine before the run.

I spent the first 8 miles feeling nauseous.

“Slow down a little, I’m sorry,” I kept telling my friends.

They obliged, insisting that it was all about running together.

And we did. We ran the whole way, except for the water stations. And my insistence on high-fiving the kids who came out to cheer for the runners. And to thank the people carrying flags to remember fallen soldiers.

Oh, and the potty stop.

But we ran and we ended with the uniquely exhilarating feeling of delicious endorphins coursing through our veins.

Even a PW wasn’t terrible.

But that was the beginning of the end of my affair with Metformin.

When I got back home, I had an evening where I became arrested by nausea. That was the final straw.

Why, I reasoned, am I trading in something I know will help me (exercise) for something that might help me (Metformin)?

So I stopped taking the pills.

Today I met with the nurse in the Survivorship Clinic. She’s a runner so she appreciated my PW tale. She has seen a lot of people on Metformin and her opinion was this:

The running is more important. The drug is a hypothetical. Metformin is hard for some people, and it sounds like you are one of those people. Quality of life matters and you need to keep exercising.

Cancer and survivorship often involve selecting between two crappy options. It feels unsettling not to do something medically to keep the cancer from recurring. But it felt even worse when I tried to.

My PW clarified the best of the crappy options. Stop the drugs and keep running.

And keep finding ways to hang out with good friends. They’ll make it fun, even when it is your worst time ever.

 

 

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Posted in Survivorship, Wellness | 29 Comments »