Posts Tagged ‘survivorship’
01.16.2012
Maintaining a sense of ourselves is one of the great unanticipated challenges of cancer treatment. When you have a brief illness or accident that lays you up for even a few weeks, it pales in comparison to the months or years of treatments we endure as cancer patients. Our bodies and capacities are compromised –– sometimes permanently altered. Friends and family disappoint or leave us. Our work goes undone.
Our changing selves may be less recognizable to those around us. Our appearance is altered, our habits changed. But staying recognizable to ourselves — that is what keeps the cancer from metastasizing to our identities.
Up until now, I have been so immersed in my own struggle, I haven’t had much room to take in other people’s stories beyond the blog posts I read. My friend Sarah sent me the book she wrote about her breast cancer and treatment, and I have finally had the capacity to take it in.
Sarah’s book is about many things, but in large part, it is about maintaining an identity across the years and trials of being a cancer patient.
Sarah is an artist, a gardener, a runner, a maker of beautiful things. Her book gives an account of her journey from diagnosis, treatment, and beyond that is unusually vivid and highly personal. It is an emotional story, told by somebody with a keen sensitivity to her own experiences and feelings.
As with so many of us, Sarah’s cancer upends her life. She immediately feels the intrusion on her identity:
My life is full-time breast cancer now. There is no space for anything else. Researching treatments, mainly, and thinking a lot. [...] Where did my life go? I feel down. How can I recover a sense of me, a sense of pleasure and things that aren’t cancer related?
As she adjusts to this new self, she articulates the discomfort so many of us feel:
It’s summer now and everywhere I look I see women with two breasts and I find it so depressing. I am only four months since diagnosis and have been through so much already. [...]
I have cried in joy at the pleasure of being alive. I have cried in pain over the loss of my breast. I have cried deep into the night, I have lain awake worrying about death, my death. I have felt isolated and alone, I have wept in hospital waiting rooms, I have nervously examined my own blood as it goes off to be tested, wondering if I could see anything wrong with it, how my own body has let me down like this.
The life of a patient leaves her feeling lost, like she is becoming somebody unrecognizable:
Spending the day in pyjamas. I didn’t even possess pyjamas before breast cancer. Why would I? I would never laze around for days on end. Ever. Am I turning into a slob?
Like so many of us, she notices others’ awkwardness in interacting with her:
I look so well, it seems to confuse people. I’ve been ignored by people, who walked straight past hoping I wouldn’t notice; and then there are those who pat my shoulder and look at me with a sort of pity that seems to imply that I might die soon. Is that what they think?
Even medical people struggle to bridge the divide between the healthy and the ill. In one episode, Sarah tries to be understanding of a consulting surgeon. He, like many of his colleagues, has no idea what she is experiencing.
I try to be nice to him, but I’m not getting through here. No, I think he has absolutely no idea what it feels like to get a cancer diagnosis, to lose a breast, to face treatment decisions that are weighted with life and death statistics, and the emotional impact of all that. To have this chemical and surgical menopauase. Just what it feels like, I can tell he has no idea.
The power of Sarah’s story is how she never stops being Sarah. She remains inquisitive, reflective, passionate, sensitive, taking classes in botany, sewing her own new beautiful bras, knitting, camping on the coast with her beloved Ronnie.
There is no time left for artifice, for superficial niceness, for anything that does not fill my heart with complete joy.
At the book’s end, Sarah makes it through her treatment. Even then, she frames her experience in her own terms, giving it her own meaning. She rejects the term survivor. As she says:
I don’t feel like a ‘survivor’, I don’t feel I want to be in a ‘special’ club, I don’t feel that I am in any way special because of the disease I happened to have had.
As I read Being Sarah, I found myself this book to be mandatory for all who work on oncology wards. We are lucky when we have medical people who are empathetic to our experiences, but in my own estimation, it is beyond the grasp of too many of the doctors and nurses we encounter.
I am not alone in my assessment of the value of this memoir. Sarah’s book won a commendation by the British Medical Association Medical Book Awards.
Sarah describes the emotional life of a cancer patient beautifully. I kept having those moments of recognition, of having my own experiences reflected back in a new light. Even where my experiences diverged from hers, I found her honesty gripping and raw. Like the rough coastlines and beautiful gardens that bring Sarah delight, her story has a wild, natural beauty that reminds us of the unexpected tenacity of life.
To purchase Sarah’s book, go here.
Tags: body issues, book review, changes, coping, courage, daily life, doctor-patient interaction, essay, support, survivorship
Posted in Survivorship | 6 Comments »
01.08.2012
I have had a hard time writing about reconstruction. It doesn’t quite fit the heroic cancer narrative of kicking ass and taking names. It’s more personal and intimate. Reconstruction serves quite literally to rebuild not to cure, making it awkward for an audience.
Nonetheless, I have had some interest bubble up through my various connections about what I am up to and what it is like. I asked my friend and fellow blogger Katie from Uneasy Pink to generate some questions for me to answer on the topic. So, here we go…
How did you chose from the alternatives?
I had delayed reconstruction, largely because of my radiation. Radiation damages skin and muscle on your chest, thereby completely altering your reconstruction options. My doctors uniformly advised me against starting reconstruction until 12-18 months after radiation because of the increased potential for complications with both my medical treatment and the cosmetic result.
This is my attempt at making a decision-tree illustrating reconstruction options.
A number of choices were not available to me because of the specifics of my case.
Once I began reconstruction 15 months after radiation, my goal was the best cosmetic outcome with the least chance of complications or damage.
Women undergoing breast reconstruction can choose broadly between tissue reconstruction and implant reconstruction. Because of my radiation treatment and body fat content, I was not a candidate for tissue reconstruction. (You can read more about these options here. There is also a newer kind of tissue reconstruction that I did not have access to, although I would likely be a candidate for it.)
Among the options for implant reconstruction, I chose bilateral lat flaps with tissue expanders and silicon implants.
Lat flaps involve taking some latissimus dorsi muscle from the back and moving it to the chest to create a shelf for the breast implant.
Tissue expanders work to stretch skin to make room for saline or silicon implants.
Because of my radiation, I had to do lat flaps on the right side. The skin was too damaged to just place tissue expanders and implants under the chest muscle (the alternative). I could have opted to do the flap on one side and the expanders under muscle on the other, but it would have compromised the cosmetic result because of the inherent asymmetry. Although I had some hesitation around the lat flaps, my doctor reassured me that they take a very small amount of muscle to make the shelf for the implant.
I chose the silicon implant because it was lighter and more natural feeling. My surgeon reassured me about the quality of the silicon implants he uses. The saline also risked dimpling and sloshing when I run.
What it have the surgeries been like for you?
I had never had surgery before I had cancer. Through all the treatments I underwent as a cancer patient, I had the easiest time with surgery. My tolerance for anesthesia and overall fitness seem to play into this.
That being said, having surgery after chemo as I did with my mastectomies was a whole different ballgame compared having surgery when I felt fit. Although the first of my reconstructive surgeries was the most difficult (it involved the lat flap construction and tissue expander placement), my suffering paled in comparison to what I experienced with my mastectomies. I was in the hospital for four days and had 6 drains in all. Definitely not fun. But waking up with an A cup nearly brought tears to my eyes.
In what ways has it met/exceeded/fallen below your expectations?
I would say that overall, so far, this processes has met or exceeded my expectation. The first surgery was tough, but I regained mobility quickly. Interestingly, I had so much scarring from radiation that my mobility actually improved since my surgeon removed significant cording from my armpit.
The one part I did not anticipate as fully was how uncomfortable the tissue expanders would be. The tissue expanders go in during the first surgery and are little bags that get injected with saline little by little to stretch out the skin. Once I got above a B cup (about 300 ml on my body), I was quite uncomfortable. My final fill went up to 400 ml, so that was over a month of living with that discomfort.
How has it impacted you physically, as far as strength, exercise and flexibility go?
I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.
How about the psychology of it?
For me, this has been the best part. Not having to strategize my neckline with every outfit. Feeling like I can have some lovely amnesia about everything I went through with the treatment. I know fully that these are not fully functional breasts –– they do not have the sensation of real breasts –– I feel more like myself with them.
I knit this sweater for myself to wear after surgery. I call it “Welcome back, girls.”
If a person is going to do this surgery, what can she realistically expect for recovery time?
“This surgery” is really three surgeries. Luckily they get progressively easier. The first surgery is the lat flap and tissue expander placement. It is the toughest, with 2-3 weeks of really being out, and another 3 weeks of limited activity. The follow-up fills also require appointments and continual adjustments.
The second surgery involved switching out the tissue expanders for the implants. The whole thing took less than an hour. There were no drains involved, and I was off of pain medication within a week’s time. My physical activity is restricted for four weeks.
I will report on the final surgery (nipple reconstruction) once it’s over. But the surgeon assures me that this will be the easiest procedure of the three.
What’s one thing the doctor didn’t tell you that a woman facing the surgery should know?
My doctor was pretty frank with me, but I think I still underestimated the discomfort of the expanders. By the time my second surgery was on the horizon, I felt 9 months pregnant. I was ready to get those puppies out of me.
UPDATE: My friend Sarah found an actual decision chart in the back of a book by a surgeon in the UK. There is another procedure that uses tissue from the buttocks to make a new breast!
Tags: appearance, body issues, boobs, choices, reconstruction, social media, straight talk, survivorship, vanity
Posted in Survivorship | 18 Comments »
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 »
08.14.2011
Twenty five years ago, I began a friendship that broadened my world. A French exchange student stayed with us in our home. I enjoyed showing her my 15 year old’s version of America for the summer. Soon afterward, I got to take a tour of her 18 year old’s version of France.
I spent two summers abroad with her family. My French became strong enough for me to enter the advanced French literature seminar in college.
But I haven’t been to France in over two decades.
J’ai beaucoup perdu.
This past weekend, a little bit of France came to me. I had another lovely visit with my French friend (that’s how she signed her letters back in the day and continues to sign her emails now).
Only this time, she brought her family.
I didn’t know what it would be like to try to summon up all that dormant vocabulary and grammar, especially after the number chemo did to my brain.
I’ll be honest, it felt a bit rough at first. Lots of misconjugated verbs and comment dit-on‘s.
My friend and I can weave in and out of all sort of versions of Franglais, but her two girls and husband counted on me for some French conversation. Not to mention my own family. My husband speaks fairly functional French but the kids needed to be let in on the action. I found myself playing the role of translator quite a bit.
But then, I crossed over to actually producing thoughts in French, to hearing myself what the song and rhythm of the language should be without having to overthink each utterance. Every time a synapse connected and a word came back –– pop!–– I wanted to do a fist pump.
Becoming plural — having a we to talk about –– was not the only significant change to my language in the past 20 years. As teenagers we spoke in singular tenses — je et tu — but now we are very, very plural.
In part, the gaps in my vocabulary reflected the changes in the world –– I needed words for “email,” “going online,” “googling.”
But the missing words also reflected changes in my own life. I need much more medical vocabulary now that I am a 40 year old cancer survivor than I did as a 20 year old college student with a Eurail pass and a backpack.
I have picked up some of the vocabulary from reading the blog Maison du Cancer and by tweeting with the amazing French survivors that we often refer to as les Cathies, Catherine Cerisey and Catherine Malhouitre. So I knew radiothérapie, chimiothérapie. But I needed some help describing consultations with le chirurgien. That word is a mouthful.
All of these words rushing forward, all of these blanks to fill in: it made me remember, once again, how deeply our language is connected to who we are.
Why, for example, is there no good French translation for “silly” but English is so impoverished when it comes to food that we need to borrow French words like gourmet and the even better gourmand?
There are whole swaths of experience that can be kept at bay when we have no words to describe them.
Which is, in part, why I blog. We share our stories and put words to the otherwise indescribable experiences cancer brings to us.
When we tell our stories, they are no longer invisible. We learn from each other and invent the words and images we need to feel seen.
Our stories become a part of a collective strength, and then we are no longer alone.
Tags: advocacy, chemobrain, coping, courage, daily life, doctor-patient interaction, essay, hope, identity loss, parenting, support, survivorship
Posted in Survivorship | 10 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 »
