by Theresa Palomares
Theresa Palomares from Houston, Texas is a woman living with metastatic breast cancer. She is one of the initiators of the Inspired Metastatic Breast Cancer Advocacy Quilt and METS Collage project, whose aim is to raise awareness of the lack of research funding for stage IV breast cancer.
In August 2011, I went for an annual mammogram to confirm what my general physician had been telling me for years, that the lump in my right breast was a “fibroid.” More than half of women experience fibrocystic breast changes at some point in their lives, so it was a reasonable assumption. However, my life was forever altered when the results came back positive for breast cancer instead. I hurried to a breast surgeon to get the monster out. No easy feat, my surgical scars were so severe they left me with a crippled arm and damaged nerve endings. Following the chemotherapy and radiation treatments, I had neuropathy (weakness, numbness and pain resulting from nerve damage) throughout my body, damage to my heart and vascular system, and a weakened immune system.
My particular type of breast cancer grew both in response to the hormones estrogen (ER Positive) and progesterone (PR Positive). This meant that my ovaries, because they produce estrogen, were actually fueling the cancer cells. One of the drugs I took to block the estrogen attacked my uterus. My only option was to have a total hysterectomy, removing my ovaries and uterus. After being forced to make such life altering decisions, I realized that I had no real control over my disease. By September 2012, I developed a new back pain that was, I soon found out, caused by a metastasis (spread) of breast cancer to my spine. Still too small to treat, my oncologist told me it would be best for us to keep an eye on it, something I call the “wait and see game.” The idea is that these drugs may deter the cancer from growing. When they fail in their job, the only other choice I’ll have will be to be on chemotherapy for the rest of my life.
Life with these drugs can be extremely distressing. I recently had to switch from one drug to another because the one I had been on since my metastatic diagnosis was no longer working. In addition, besides bone metastasis in my spine and a small tumor in my liver, doctors found two nodule growths on my thyroid. I also have persistent headache: for someone with metastatic breast cancer, this symptom requires a brain MRI and PET scan to find out if the cancer has spread to the brain.
The biggest issue for me right now is that I have had to leave my home in Houston, TX to relocate to Oklahoma City. There is a 24-month waiting period for medicare due to disability rulings, so I have been without insurance since I was classified as disabled due to metastasis. I could not afford insurance; my home state made drastic cuts to the medicaid system; and criteria for enrolling in the federal breast cancer treatment program are income-based and designed primarily for one-stop treatment rather than the continuous treatment needed for a metastatic patient. As a result, I have had to rely on the Indian Health Services, which is responsible for providing medical and public health services to members of federally recognized Tribes and Alaska Natives. I am from the Delaware tribe, so to use the program I need to take up residency in Oklahoma.
When I was diagnosed with metastatic breast cancer, I realized the “survivor” label no longer applied to me. I could no longer be one of those pink-ribboned warriors who shout, “I’m cured,” and enforce “early detection” messages to raise money for “the cause.” With metastatic (stage IV) breast cancer, a “metster,” I was no longer in the PINK club.
When I first joined a local breast cancer support group, because I sought support from my community, I had no idea I first would be ignored and ultimately asked to leave because my situation scared the other “survivors.” I kept looking for a group that would understand, but the only support group for Stage IV breast cancer was 22 miles away. It was just on the other side of town, because I don’t drive due to my debilitative state, it might as well have been on the other side of the planet.
Resigned to operate from my home base, I joined an online forum for advanced breast cancer (ABC Forum) called “Inspire.” We kept seeing our metasisters dying, so some of us formed a Facebook group (Inspired Metastatic Breast Cancer Advocacy Group) to come up with ideas about how to bring attention to metastatic breast cancer (MBC). Funding for MBC is a pittance (just 3-5 percent) of the total monies spent on breast cancer research. Most of the money goes towards awareness and “early” detection.
We started some petitions: one to ask “Breast Cancer Awareness Month” to be renamed “Breast Cancer and Metastatic Breast Cancer Awareness Month;” another, which is still ongoing and has collected 20,000 signatures so far, to ask the Ford Warriors in Pink campaign to add a metastatic breast cancer organization to their list of non-profit beneficiaries. They give prominence only to early stage organizations and to stories of “cure,” and on their panel of “warriors” they do not have any Stage IV stories.
I also contacted my mayor to ask why, since in the past she had lit City Hall in pink for awareness month, she couldn’t do the same thing for the approximately 40 thousand women and men who die from MBC every year, those for whom the pink of survivorship does not apply. She asked what our colors were, so I told her about METAvivor Research and Support, Inc., a group that concentrates exclusively on MBC and distinguishes the unique experiences of metastatic disease with a tricolored ribbon of pink, green, and teal. Success! City Hall was lit up in METAvivor’s colors for 3 days in 2012. Since then, METAvivor has started asking other cities to light up buildings in our honor.
Our group also started a quilt project. We decided to make am 8½ square foot quilt with our stories sewn into it for display at hospitals, charity events, and fundraisers. I had never sewn before but ended up being the project manager, I guess because I was the healthiest member of the group. So far, my “mets” are stable, and I’m not on chemo. The quilt, now 75 percent complete, hasn’t been easy for this non-seamstress, but I’ve had a lot of help. I received fabric from Arizona; photo transfer paper from Washington; a display stand from Maryland; and fabric and stories prepared on iron-on transfer paper from London. Even women who were exhausted and dealing with chemo-brain sent in their stories. I edited them and posted them on our Facebook page.
Some of the people taking part in the quilt project have already died but others, like me, are still alive and waiting for news of some breakthrough in cancer treatment—something that will prolong our lives. We hold out hope. It is amazing when we receive stories from people even up to a few days before their deaths. They want their stories to be told.
Since the MBC community recognizes October 13th as Metastatic Breast Cancer Awareness Day, I would like to display the quilt in front of City Hall in Texas during the second week in October. The Bayou City Arts festival will be going on, along with the tri-colored lights of MBC awareness.
I wanted to tour the quilt before now, but I am no longer a “superwoman.” I am getting it done though. My metasisters and metabrothers are counting on me. In early September, the quilt, half done, made its way to its first stop, a metastatic breast cancer retreat organized by the Avon Foundation and John Hopkins University. The goal is to send it to as many research centers as possible so scientists will see the real faces and read the real stories of women and men struggling to stay alive on salvage chemotherapy. Sometimes when there is a will, there is a way.
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