Posts Tagged ‘changes’
10.03.2011
There are so many stories I could tell about my surgery last week: how my friends, neighbors, colleagues and family rallied around me, once again, to get me through this ordeal; about the absurdity of waiting in the recovery room for 9 1/2 hours because the hospital was overfull; about specific interactions with doctors and nurses that merit closer examination.
All of these would make for good blog posts.
What I want to share with you, however, is a feeling. Feelings are fleeting but powerful.
For me, this feeling defines the experience of my surgery:
Delight.
I have had a hard time writing this post. It feels personal and intimate.
But I wanted to share this emotion, this delight, of waking up with breasts.
During my surgery, my doctor filled each of my expanders with 200 milliliters of saline, giving my hospital gown a nice A-cup sized bump. I have spent almost a year and a half with nothing, less than a flat chest. And I saw again that familiar, feminine shape on my body.
Delight.
Although there are obviously many important differences, the closest thing I have experienced to the surprise, joy, and pleasure I experienced in that moment is when my babies were handed to me after I gave birth.
I have gone through such a long journey. I have had pain and loss. And now I had something new and lovely to show for my suffering.
I am delighted.
Truly, truly delighted.
Tags: appearance, body issues, changes, gratitude, identity loss, reconstruction, survivorship, vanity
Posted in Survivorship | 21 Comments »
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 »
06.24.2011
During treatment, we are thrust into an uninvited, relentless Present Tense. We put aside our plans and obligations and focus on our health. We take leaves from jobs, renegotiate our commitments, garner support from people who care about us.
The future becomes necessarily more tentative. You may not be there to meet it. Or maybe you will, but who knows in what condition. How will I feel next week? Tomorrow? An hour from now?
When you are healthy, it is easy to plan your life with some confidence. When you are ill, there is hesitation, particularly if you are used to being dependable.
Time changes shape. Horizons shorten. The Present Tense of crisis is fueled by adrenaline, colored by anxiety. There is so much to worry about. Health. Money. Health. The inevitable dramas with family and friends.
Health.
As if cancer was not enough strain, imagine throwing young children into that mix. Their needs are perpetual. They are, by design, dependent. This is their childhood.
Despite the insistent, unwelcomed Present, a mother makes an effort to create a semblance of normalcy and joy.
But the strain is always there. A child, naturally, wonders about the future. “When I get bigger…”A mother pulls back, reluctant to imagine a time that she may be robbed of sharing.
My family has been in this state of crisis. Like a person huddles over an injury to protect it from the world, we have been doubled over in the wake of my cancer. We have been wounded. The primary injury has been tended to, but the peripheral problems have only been uncovered, including this unrelenting sense of crisis.
In addition to the physical devastation of treatment, patients and their families must also contend with a new financial reality. On average, American cancer survivors pay $5,000 more a year in medical expenses than people who have not had cancer. That takes a lot of options off the table for the typical middle class family. Vacations go. Summer camp, music lessons –– winnowed down. That certainly has been our experience.
Last week, we got a reprieve. We participated in a beach retreat with a new non-profit called Little Pink Houses of Hope (LPHOH). Founder Jeanine Patten-Coble, herself a breast cancer survivor, recognized that women are not the only ones impacted by breast cancer. An entire family is affected.
LPHOH gave my family use of a beach house, donated by a couple in Kill Devil Hills, North Carolina. LPHOH hosted several families last week. All of us arrived at these homes, stocked with groceries, armed with gift certificates to local merchants and restaurants. Jeanine told us that her goal was to keep our wallets closed for the whole week. Just hearing those words brought our stress down a few notches.
Jeanine and the other “volunstars” provided us with a schedule of optional activities, from kayaking to jewelery making, all designed to give families quality time together. They wanted us to feel comfortable and cared for. Our challenge was to open ourselves up to receive.
It took us a few days before we realized just how tightly wound we were. You don’t realize you are hunched over until somebody lays a hand on you and reminds you how it feels to stand up straight. Midweek, the tight knot we were started to loosen a bit. We breathed more deeply. We smiled more easily.
We shifted into the pleasant Present Tense of a lovely vacation. The no-watches-needed Present Tense of an afternoon by the ocean . The wake-up-and-see kind, as you lazily peek back at the sun through the curtains and anticipate another adventure.
I was able to go on a Ferris wheel at a fair with my children, teaching them how to be brave.
I played in the waves with my son, sharing the awesomeness of the ocean.
I collected seashells with my girls, seeing beauty around us.
My husband sang as he kayaked down a river, while his punctured boat slowly sank, requiring the occasional bail out. A perfect metaphor for life with cancer, to be sure.
As we left the cocoon of the retreat, we came back restored, finding more joy in each other and our lives, together. Our time seems lighter, even in the ordinariness of our daily lives.
Along with seashells and sandy shoes, we have brought home a bit of the pleasant Present.
Tags: attitude, changes, coping, daily life, essay, gratitude, mental health, parenting, support, survivorship
Posted in Survivorship, Treatment, Wellness | 16 Comments »
05.09.2011
I’m sorry I haven’t posted in awhile. My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue. It’s been a bit of a dance — keep on top of life and manage to rest and exercise.
It’s a little scary to have experienced a sense of ascension from the Cancer Pit and then feel it tug me back in. Aside from my own physical symptoms, last week two online friends died. Both were parents of young children. Both were around my age. Sarah had been in remission and faced a recurrence that ultimately killed her.
This is Sarah. She made a promise to herself that she would die with her hair.
Derek wrote about going through the same treatment as an online friend on the same timeline. His friend’s treatment worked, but his did not.
These events renewed my sense of urgency about improving our understanding of cancer –– not just breast cancer, but the ovarian cancer that killed Sarah and the colorectal cancer that killed Derek.
Last week, I also participated in my first clinical trial. I had learned about it through Susan Love’s remarkable project, The Army of Women (AoW). I had a doctor’s appointment anyway. It only involved drawing a few extra tablespoons of blood and a follow-up phone call. The researcher I spoke with said that AoW has made a huge difference in their ability to recruit enough subjects for their study. Across the board, she said, the participants have been eager to help.
I had intended to do another clinical trial at the end of my treatment, but it didn’t work. For that trial, I would take Metformin to prevent a recurrence. Because my tumors were hormone-receptor negative, I am not taking anything like Tamoxifen or Armidex to prevent recurrence. My chance of recurrence is around 20-30%.
My oncologist had explained to me why they were prescribing the diabetes drug to breast cancer survivors. They had done meta-analyses of survival and recurrence rates in breast cancer survivors. Metformin seemed to significantly lower recurrence rates when they looked at populational data, controlling for other factors like weight, age, and fitness. They thing it has to do with cortisol suppression.
I ended up not being able to do the clinical trial because the Metformin shipment got held up in Canada. By the time it arrived, I was no longer qualified because of my date of diagnosis. My doctor offered to prescribe it to me for off-label use.
I hesitated. There are potential gastrointestinal side effects to Metformin. And for those of you who are new to my blog, you may not realize that I am a Side-Effect Queen. No discomfort, however small, seems to pass me by.
Then Sarah and Derek died.
That was it.
I called my doctor and decided I couldn’t bank on my fitness, youth, and good attitude to prevent a recurrence. I felt better about doing something at a molecular level that might interfere with tumor formation.
I spoke with three breast oncologists who thought the Metformin was a good idea. My blogger buddies who went to the National Breast Cancer Coalition conference and reported that the Metformin trial seemed like the most promising thing out there in preventing recurrence.
I needed to make a choice. The consensus was that this seems like a good one.
Because if my cancer comes back, it will be metastatic.
Diarrhea or metastatic cancer?
I’m going to take Door Number 1, Bob.
Let’s hope I have made the right choice.
If you are a woman in the US or Canada, please sign up for the Army of Women. You don’t have to be a cancer survivor. There are a lot of clinical trials out there that just need participation. We need a better understanding of cancer. Knowledge is power.
Tags: changes, clinical trials, coping, fatigue, self-advocacy, survivorship
Posted in Survivorship, Treatment, Wellness | 20 Comments »
