In what has become an early spring event, I am looking at my second bone tumor crisis. Just at the moment that I felt fabulous and had an energy level that I had not felt since before I was diagnosed with this sludge, I got nailed with intractable pain and disability from a tumor that has been in my sacrum since I was initially diagnosed with metastatic disease in August 2012. I just couldn’t believe my luck. Literally two days after telling my director that I couldn’t wait to dig in at last, I was felled with severe pain that truly came out of nowhere.
A routine PET/CT and one MRI later, it was revealed that the 2.7 cm tumor had grown to 3 cm. But the great news was that the primary tumor in my breast was smaller and nothing else was lighting up in my battered frame. The site was biopsied and its makeup changed to a limited degree. Where I was ER+/PR+, HER2- at initial diagnosis, this time I was PR-.
To deal with the pain and kill this thing, I am going through my second course of radiation. While radiation is no picnic, this time it hasn’t been so bad if you take the long view.
For one thing, the workflow in the radiation oncology unit has changed for the better. The staff has been wonderfully supportive and professional–really outstanding! I had to have a frame made to keep my legs in the right position, but that was not a big deal. And while the reality of laying on a table while a total of 70 seconds of high dose radiation in six positions is beamed into my body still freaks me out, I’m tolerating it pretty well.
The first two days I had outrageous nausea and was drowned in fatigue (which caused me to miss the Black Sabbath concert, dammit!). I am still in some pain that keeps me off my feet and the fatigue is like a cloud over my head, but I can detect mild improvement and hope to be pushing that damned boulder up the hill once again in a few days.
So besides missing the concert it all seems to be moving along as planned. Except for the email I received from the nurse practitioner on behalf of my physician. Seems the doc wants to change up my medication since the tumor wasn’t responding to the Exemestane. She put before me a couple of choices.
Behind Door Number One is the the choice of Exemestane + Affinitor. Yes, this little dandy of a drug is used to treat breast cancer (and other cancers), usually after other cancer medications have been tried without successful treatment. The more common side effects are bloody nose, chest pain, weight loss, cough, diarrhea, fever or chills, mouth sores, nausea, bleeding gums, extreme fatigue, and vomiting. Oral chemotherapy. Fabulous!
Behind Door Number Two is the choice of Exemestane + Faslodex. This is used to treat hormone receptive positive breast cancer in women who have gone through menopause and whose disease has spread after treatment with antiestrogen medication. This is given monthly via two injections into one’s gluteus maximus. Side effects include commonly reported side injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes. Sweet!
And there is always a Door Number Three. On first glance it doesn’t seem like much of a choice, but the lure of knitting fiber, wholesome milk, and adorable cartoon animals are the clear winners in this choice before me. I pick this one!
Personally, I have some issues with the choices from the start. Given that this tumor is now on its way to permanent destruction and everything else in my body has responded quite positively, I am quite content to wait until further scans to make one of these choices. After all, these two tumors have been there since the start and have always been active, even if they were stable. I meet my new medical oncologist in a few days and will discuss it then. (My former oncologist has moved on to bigger and better things at Yale University, so this will make my fourth oncologist.)
First of all, I’m not crossing the line into chemotherapy–oral or no. Psychologically I’m not there. And, second, I already get one injection in my ass every month (Xgeva) and every three months another (Lupron). I’m not anxious to put my poor posterior up for more torture.
While personally this cancer experience has been pretty damned awful with regard to pain as the result of bone metastasis, in the grand scheme of things my cancer has been relatively well controlled. The lymph nodes and tiny lung lesions were resolved shortly after starting Tamoxifen and have remained so. I experience mischief in my axillary lymph nodes now and again (pain that comes and goes with no palpable nodes) and my primary tumor–though still intact–is much smaller. Bottom line is that I’ve been able to hold steady with systemic hormonal therapy. But chemotherapy? That is the proverbial line in the sand.
When I have to make that choice, my desire to live out a full decade is drastically diminished (or at least I think so). And even though I have to make all kinds of arrangements and contingency plans, I’ve predictably pushed it off. I mean, I don’t feel like making funeral arrangements for myself. But I suppose I have to face that all happening sooner rather than later; after all, people do it all of the time. Oh, yeah, and probably goodbye career! And it is not that death is in any way imminent–it isn’t!–but once I use up that last line of hormonal defense there’s no going back.
Chemotherapy is the tipping point when I have to make a deal and choose not what I want to do in my life, but how far I am willing to go to have any life at all.
The Breastless Nude
Recently I went on quite a tear when it was revealed that Kohl’s and Komen had co-opted METAvivor’s intellectual property for an ad campaign. It really rakes my last nerve when people do this; rather than call up an original idea–which I’m sure their advertising departments could have done–they chose to take an idea already copyrighted and trademarked. And what bothered me most was that the campaign, which had no mention of Stage IV breast cancer, was built on the backs of Stage IV women and men via METAvivor. But now there’s something else that’s got my pantyhose in a bunch.
I came across a project by photographer Charise Isis called Grace. Isis, inspired by Hellenic sculpture, has assembled a collection of photographs of women who have had mastectomies as an “exploration into the grace of their humanity.”
Yawn.
People start taking photographs of women with mastectomy scars and suddenly it’s pushing the aesthetic envelope. It begs the audience to empathize and then hold these women in high esteem because they have a disease, have gone through treatment, and survived. It must be noted that women and men with breast cancer are no braver, stronger, or aesthetically pleasing than anyone else who goes through the experience of cancer. Then why the imagery?
Women–particularly their breasts–have been objectified for centuries. Now we witness the objectification of mastectomy scars. Indeed, Isis emphasized that sculptures of antiquity, despite their amputations and scars, survived and are “valued as objects of beauty within our culture.” Is the corollary, then, to value women as “objects of beauty” in society? Do mastectomy and further surgery scars become “objects” of beauty and bravery in breast cancer culture?
This project also perpetuates the iconic mythology of breast cancer–that to conquer breast cancer one must be strong and brave. It is the responsibility of the woman to defeat her disease and become a survivor. If she doesn’t survive? Well, she didn’t try hard enough.
Of course, in Grace they’ve all had cancer. We should not be surprised that women living with metastatic disease are absent from yet another pithy piece on breast cancer survivors. The ugly scars hold no interest if they are on a woman who has metastatic disease. Breast cancer isn’t about death. It is about pink ribbons, endurance, and survivorship.
I am not particularly moved by this project. The images try very hard, but they seem forced and largely uninspired. And although some may find inspiration in its images, my view is that as a body of work it objectifies the surgery, the scars, the physical detritus of breast cancer. Although I have only just heard of it, the project has been traveling the United States for the past two years “showcasing the brave subjects who bared their bodies for the camera, in the name of survivor solidarity.” (Source.)
Bullshit.
I am an enthusiastic supporter of David Jay’s SCAR Project. And it is largely because of the foundation on which the project has been constructed: “The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: raise public consciousness of early onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.” Jay also includes men among his subjects.
The women who pose for the SCAR Project are not representing some existential depiction of disease. They are there to show the pain, the disfigurement, the life changing hell that this is breast cancer. Indeed, as the project proclaims: breast cancer is not a pink ribbon.
I think that it is time to rip to shreds the idea that breast cancer is a rite of passage for women. We need to acknowledge that despite the pink camouflage, those of us with breast cancer withstand the barrage of treatments most other cancer patients undergo: oral drugs/chemotherapy, IV chemotherapy, radiation, and surgery because we have a disease that can kill.
We must stop romanticizing this deadly disease through ideas of bravery and survival skill. Breast cancer patients are no braver, stronger, or aesthetically pleasing than anyone else who must experience this dreadful disease. And remember that many with metastatic disease have no outward signs that they have breast cancer.
And we need to stop putting women on pedestals, for as soon as a woman stands there she loses her identity. She is reduced to her being identified with her body parts or how she appears to the senses. She becomes a scar, an implant, a loss.
I am much more than that. We are much more than that. It is time that we demanded nothing less.