Unite and Conquer in Here Be Dust

  • Dec. 7, 2015, 12:40 p.m.
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  • Public

On Dec. 5 I celebrated my first full year after completing active treatment (lumpectomy/chemo/radiation) and the end of my first year on anastrazole (at least four more years to go). I still deal with fatigue and vertigo, along with increased carpal tunnel syndrome flare-ups. New research links the use of anastrozole with a higher incidence of CTS: “It has been suggested that hormonal risk factors may be involved in the pathogenesis of CTS, and a higher incidence of CTS has been reported in randomized clinical trials with aromatase inhibitors (AIs) compared with tamoxifen.”

The good news is that although still higher than my pre-anastrazole baseline, the frequency and severity of my flare-ups have decreased over the past month. My guess is that this decrease corresponds to the end of Yard Work Season. My hands won’t undergo those workouts again until the spring. Meanwhile, what passes for winter hasn’t hit Florida yet. Even before cancer, colder temperatures had exacerbated my CTS, so I’ll see how it affects my hands this time around. My “new normal” for flare-ups still exceeds my “old normal” for winter.

I received these last month:


Large size

Learning that my creative play in the form of a “Sassy Cups” bra had resulted in a $2,200.00 donation to Citrus Aid made my day. As Dr. Bennett’s letter states, “The Citrus Aid Cancer Foundation has assisted over 80 individuals while under active treatment with financial aid for items such as gas cards, household expenses, medications, and transit vouchers.”

(I pose with the bra on display in this entry. Close-ups of the bra are shown here.)

None of us had anticipated the donation when I was asked to make the bra, which also resulted in the donation of a display table for Citrus Aid during the Diva Night/Sassy Cups event on October 10. Citrus Aid is headquartered at Robert Boissoneault Oncology Institute, the facility where I received radiation and where my support groups meet. The foundation is completely volunteer-run and focuses on a single county whose population in 2014 was estimated at 139,377 by the U.S. Census Bureau. It is small-scale, local, and efficient.

I am especially heartened by the fact that the donation benefits people in need who are dealing with any cancer, despite the fact that Sassy Cups had focused on one particular part of anatomy. And that brings me to my entry title.

Frankly, I had created the bra with mixed emotions. As I have written here, I can do without the crass commercialization and fetishization that comes with Pinktober, which does a disservice not only to breast cancer patients but to all cancer patients. Designing the bra spoke to my love of creative play, but on one level it played into that fetishization. I had decided to go ahead with it solely because of the organization for which I had been asked to do the project. Citrus Aid benefits people in my county regardless of which cancer they are facing.

But make no mistake, the cancer community is divided. That’s got to stop.

For example, I recommend reading the discussions here and here (beginning with barryboomer’s (lymphoma, stage IV) third comment, “For some reason the BC Marketing Machine is really good…”). There is resentment among some in the general cancer community against the attention paid to and funding provided for breast cancer relative to other cancers. See, for example, the comments by CAS1 (lung cancer) on the advocacy thread.

As I had written on that thread, “One of the travesties of BC stems from cultural fetishization and misogyny, period, which are behind the focus on things like wigs, makeup tips, etc. Crass as this sounds, internal organs don’t ‘have to be’ dressed up. The ‘male gaze’ doesn’t alight on (name the internal organ of your choice). … That is what we are also fighting, in addition to cancer. Worse still, it threatens to divide our community because bottom line, we are all in this together. I know that part of the lobbying done at MET-UP‘s DC event involved funding for ALL cancer research and treatment, not just BC (see, for example, http://cultofperfectmotherhood.com/action-alert-all-caps-freak-out/ ). I also know that stage IV BC patients often report having more in common with stage IV patients with other cancers than with early-stage BC patients. I understand that, in the admittedly limited way that someone diagnosed at an early stage (but always with the potential to become stage IV) understands that.”

My comment included quotes from The Risky Body’s “You are not required to be pretty” and Lara Huffman’s “My Disease Isn’t a Cutesy Slogan.”

This division within our community becomes all the more distressing given recent findings that, “Classifying cancer tumors by their molecular structure instead of the organ or tissue where they were found such as the bladder or breast might lead to more precise diagnoses, better treatments and results for patients.” For example, triple-negative breast cancer was found to be genetically similar to ovarian cancer.

The Cancer Genome Atlas has begun to break down those body-part-based research silos, which should yield better, more targeted studies in the fight against all cancers. That still leaves a formidable body-part-based infrastructure of research, care, funding, and disease cultures. And that becomes a problem when help, or the lack thereof, is based on stigma (see, e.g., lung cancer), commercial misappropriation (see Pinktober), and anything other than attention to the diseases themselves. We cancer patients – we patients, period – need to unite as best we can.


GypsyWynd December 07, 2015

Congratulations on passing the one year mark.
Describing cancers by their structure rather than their body location makes sense. Although it's probably easier to get people to donate to "breast cancer" than to some molecular/medical thing they can't pronounce.

Vamp December 08, 2015

Congrats!

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