Posts Tagged ‘healthy people’
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.
Tags: appearance, body issues, boobs, changes, coping, essay, healthy people, identity loss, reconstruction, straight talk, survivorship, vanity
Posted in Survivorship | 56 Comments »
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.
Tags: attitude, body issues, changes, coping, courage, essay, exercise, fatigue, healthy people, identity loss, nausea, running, side-effects, survivorship
Posted in Survivorship, Wellness | 29 Comments »
04.11.2011
Academic conferences are, among other things, a kind of reunion. My career has traversed a number of communities. Every place I have been, I have made friends and built relationships. We often keep distant tabs on each other, mainly through our work.
In between paper sessions and talks, the life of the conference takes place over meals, coffee, and receptions. That’s when you get to see your old friends and catch up. It was interesting to re-enter that world this past weekend after having gone through a great personal challenge.
I am not going to write about the few people who seemed to be avoiding me. I am going to give them the benefit of the doubt that they did not recognize me with my corkscrew curls, which only got screwier in the New Orleans humidity.
I was pleased with the grace that a number of my friends and colleagues showed me. I thought I’d catalog them here since I am often told by witnesses to the life tragedy of cancer, “I’m not sure what I should say.”
A grad school friend
We were walking together, and she stopped and turned to me. “Can I just say how sorry I am for everything you’ve been through? When I got your news, it hit me so hard. There are so many ways our lives are similar, and you are the first of my contemporaries to deal with this. I am so glad you are doing better.”
A former professor I knew mostly at a distance.
“I want you to know that I am so proud of you. I love your blog and have sent a number of friends there. What your doing is great.”
A former mentor
Meaningfully: “I am so glad to see you here.”
Friends I hardly ever see but I can really talk to
“We can talk about this if you want, but we don’t have to.”
(And they meant it 100%.)
Friends who faced their own challenges the past two years
“I am so sorry I couldn’t reach out. I was so swallowed up in my own life. But I thought about you all the time. And I’m so glad to see you.”
****
It’s normal to have long gaps between seeing colleagues. At one reception, someone I hadn’t seen in over five years came up to me, brightly saying, “Wow! Lani! I love your hair!” I just smiled and said thank you.
Then he looked at me intently and said, “So how’s it going? How have you been?”
I had to say that the true answer makes terrible cocktail party conversation, and then outlined briefly the chronology of events.
I felt like the wet blanket at the party.
Overall, it felt like another important transition back into my old life. I am glad to report that I was received with a warm welcome.
Tags: appearance, attitude, changes, coping, daily life, healthy people, identity loss, talking, what to say
Posted in Survivorship | 6 Comments »
04.04.2011
My chemobrain seems to be improving in most areas of my life. I can concentrate better. I recall details more accurately. I even keep some ideas in my short-term memory. Each time this happens, I notice. It’s a fist-pumping triumph.
However, I continue to struggle recalling faces. I led a seminar a few months back. A student who I have known for over a year attended. She had been out on maternity leave, so there had been some break in our contact. My brain could not put her name and face together.
It felt painfully obvious to me. When I teach, I tend to use people’s names to facilitate conversation. I had to look at her and say “you” a lot, internally distressed at not pulling up her name in my brain.
Afterwards, I checked with another student, “Was that Liz?” I was assured that it was, and I went up to Liz and explained my embarrassment at blanking on her name.
If you knew me better, you would know how completely uncharacteristic this is. At my 20th high school reunion, the organizer forgot to get name tags. I offered my Facial Recognition Services to my distressed classmates. I stood in the corner with a number of people, discreetly helping them link high school names with middle aged faces. I had nearly perfect recall of the name-face link for people I hadn’t seen in years.
So this new handicap is a big change for me. I am trying to figure it out. One strategy I’ve developed is to make a deliberate study of new faces, talking aloud their distinctive qualities and then saying the names that goes with them.
Without that, my recognition is a bit of a crapshoot.
The worst experience I’ve had so far with prosopagnosia happened a few weeks ago at the Guggenheim.
After a lovely afternoon of modern art, I went to pick up my coat and bag. There was a long line at the bag check, and I was preoccupied with the subway map. I absentmindedly handed my tag to one of the men working behind the counter, and after a minute or two, looked up again.
“Did you hand me your tag?” he asked.
“Uh, yeah. I think so.”
“Are you sure it was me?”
“I’m pretty sure,” I answered, the dreaded doubt seeping in.
As we muddled around in this confusion, the actual man I handed the tag to came forth with my bag. I looked from the first man to the second. They were both tall African American men with shaved bald heads, but their faces were quite distinct. The first had a brush mustache, and the second had thick round glasses.
“Oops,” I said, realizing my mistake. “That’s just terrible.”
The first man looked pained and answered me pointedly. “Yeah, you’re right. That is terrible.”
He took the tag of the next person in line, and I rushed off with my bag.
I felt awful knowing that our agreement about my mistake being terrible came out of different understandings of my confusion.
I was ashamed that I couldn’t see the mustache versus glasses. He assumed I was a racist.
I wished I could tell him about blanking when Liz returned from maternity leave. Or chemobrain. Or any number of embarrassing things that would ease his judgment of me.
But the moment was gone.
Tags: appearance, awkwardness, chemobrain, daily life, healthy people, survivorship
Posted in Survivorship | 8 Comments »
02.07.2011
This past Sunday, I met up with a local running club. About fifty or so runners congregated at the park entrance. It was a crisp, clear day. The coach called our attention and announced the morning’s runs.
I listened attentively as he spoke. I’m just getting my running legs back, but I’m pursuing them with a vengeance. I asked my oncologist what I could do to help ensure that I am not one of the 20% of women in my situation who end up with metastatic cancer. She told me that I will hear a lot of unfounded advice, but from her point of view, the only two things that would influence my prognosis are keeping myself to my lowest healthy weight and exercising regularly.
So I signed up for two half marathons. The first one will exactly 4 months after my last treatment, one year after my last Big Chemo. The other will be right after my 40th birthday in April.
The coach described three runs for the morning, and now I had to choose. I had a dilemma, though. To train for my half, I needed the longer distance of the intermediate group. Because I have just started to get my mojo back, the beginning group’s pace suited me better.
The choice may seem obvious to some of you. Of course, I hear you say, I needed to go the distance with the intermediate group and settle into the back of the pack.
But that’s a big adjustment for me. I’m not used to traveling at the back of the pack.
I went with the intermediate group and started out the 8 mile run at too quick of a clip, chatting alongside another runner. After a half a mile, I realized that I couldn’t hang in.
“Sorry, I’m going to have to drop back,” I said.
In my former life, my pride would have spurred me on to push myself to meet his pace. But my body is fragile as it recovers. It must take precedence over my ego.
As I ran along, letting more and more runners pass me by, I meditated on the metaphor of this situation. Others look at me and see somebody who is fit. I have the gear and the form of an experienced runner. I am relatively young. My hair is long enough and my complexion rosy, so I no longer look the part of the cancer patient. People expect me to be a different kind of runner.
However my pace belies these expectations. My body knows the difference. My lungs bear the scars of the radiation. My heart is recovering from the 18 doses of Herceptin which caused it temporary damage.
It doesn’t matter what they think, I tell myself. I know how to do this. I know how to get in the rhythm of my own breath. It’s a hilly course, and I know how to steady my own exertion so that I climb with constant effort.
The run brings my reality into sharp focus. I am constantly facing choices like this, managing people’s expectations of me and my own limitations. Right now, on this course and in my life, I can expend my energy on distance or pace but not both at once.
I run at the end of the pack, but I am not alone. There is a woman in front of me. From the look of her physique and form, she is a newer runner. She often slows to walk the hills. She hasn’t learned how to change her stride and pump her arms, to manage her energy on the climb. Every time she hears me approach, she picks up her pace again, determined not to be The Last One. Once I realize this, I feel somewhat annoyed. Today, I bear the stigma of The Last One. She doesn’t want to be me.
I have to fight my vain desire to pass her up just to make a point. I decide to treat this like yoga. I tell myself that I have to follow my breath and find my body’s edge. Stop comparing, I tell myself.
I am pleased with myself as I get into mile 7. The run has been good, and I’ve carried myself the whole way without walking. I feel strong enough to go for a few more miles if needed.
We approach another hill, and the woman slows so that now she is only a few yards ahead of me.
As the hill gets steeper, she stops to walk once again.
This time I pass her up.
I find a metaphor in this moment, too.
I may not be able to do speed and distance, but I have not lost the strategy for dealing with the hills. My illness may have set me back, but I still benefit from the wisdom of my experience.
Tags: appearance, attitude, body issues, changes, coping, courage, daily life, essay, healthy people, identity loss, survivorship, vanity
Posted in Survivorship | 13 Comments »
