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 | 17 Comments »
12.26.2011
I have used this blog to tell my cancer story. As my treatment fades into the background and my remission remains an open question, I am in that vague gray territory of Cancer Limboland.
Because of this, I read cancer stories avidly, enough so that I am going to deign to join the end-of-year summarizers that make picks for the year’s Big Stories.
Here are my picks for the Top Cancer Stories for 2011:
Targeted vaccines hold promise of cancer prevention –– and treatment. Gardasil, a vaccine for human papillomavirus (HPV), gained greater notice after Michele Bachmann falsely claimed that it caused retardation. In fact, Gardasil has been shown to be safe, and HPV prevention stands to decrease rates of cervical, oral and throat cancers. Many pediatricians are now recommending that pre-teens start on a schedule of vaccinations, potentially reducing the number of these cancers in the next generation.
Provenge, a vaccine to treat metastatic prostate cancer, came out in 2010 and has been shown to extend life expectancy on the average of four months. This has led to a heated medical ethics debate: is four months of life worth the almost $100,000 price tag? As insurance companies and academics weigh in, the company responsible for the drug has seen its stock shares plunge, potentially discouraging further research into vaccines for other cancers, including bladder, brain, melanoma, and blood cancers. (For a complete list, scroll to the end of this article.)
Chemo shortages effect cancer patients, prompting President Obama to sign an executive order to monitor production. I have pored over the stories (such as this one and this one) about chemo shortages. I know a number of patients who have had treatments delayed because of the underproduction of these drugs. Over 180 lifesaving medications have been unavailable, including ones used to treat childhood leukemia, breast, ovarian, and colon cancer.
The shortages are a multi-factored problem. The U.S. has a decentralized medical system, inconsistent insurance coverage rules, and a pharmaceutical production system that rewards the production and sale of new formulations over old drugs that can be sold as generics. In any case, the situation is dire, and lives are on the line. In November, President Obama took a step to issue an executive order to push on this issue. But clearly, more needs to be done.
While cancer survival rates increased, gaping disparities persist based on education, race, and income. In June, the American Cancer Society released statistics about cancer survival rates showing glaring disparities in subpopulations in the US. The heart stopping line of the news coming out of this report:
“If we eliminated both educational and racial disparities….what we’re seeing is we can eliminate 43% of cancer deaths in men and 30% in women.”
Cancer is disproportionately affecting –– mortally wounding –– some communities over others.
The number of cancer survivors increase, as do the number of survivorship programs. There are now 12 million cancer survivors living in the United States. In 2006, the Institute of Medicine recommended that all cancer patients receive a survivorship plan, individualized for their treatment and medical history, giving guidelines for maintaining and monitoring their health. In 2010, the Center for Disease Control introduced a National Action Plan recommending a Public Health Approach to survivorship care. Along with the Livestrong organization, survivorship is increasingly recognized as an important component of cancer care.
Survivorship care means a lot to me, because it gives people tools and a plan, and, ideally, the socio-emotional support they need. I would like to see these programs broaden their reach, touching more patients and their families and caregivers. This past year I heard of a woman committing suicide during treatment. I learned later that the suicide rate among cancer patients is double that of the general population, with men being at the greatest risk. Survivorship plans need to be initiated at the time of diagnosis, to help support patients through treatment. Support means compliance, which, in the best cases, means better outcomes.
Criticism of the Susan G. Komen Foundation pushes them to change the name of Breast Cancer Awareness Month to Breast Cancer Action Month. While this may seem like a small thing, to me, the name change shows that America’s favorite charity is yielding a little ground to critics (myself included) decrying corporate pinkwashing. As “Pinktober” nets big profits, it has been criticized by news outlets as disparate as the Wall Street Journal and the Huffington Post. Much of the outcry came at the end of 2010, when it became widely recognized that the Foundation was suing smaller organizations who dared to use its trademarked phrase “For the Cure,” resulting in ridicule from longtime supporter and comedian, Stephen Colbert.
Perhaps it’s wishful thinking, but I see Komen’s shift from the language of “awareness” to the more politicized “action” as a potential shifting of the tides. From the response to my own post, I think the public is wising up to empty consumer-oriented pink ribbon slacktivism and demanding research — and real cures.
Of course, if you or anyone you love has been touched by cancer, that is the biggest news of all.
I would love to hear your thoughts on the Big Cancer News of 2011.
I hope that 2012 brings you and your loved ones peace, love, and health.
Tags: advocacy, cancer headlines
Posted in Uncategorized | 8 Comments »
