Cancer Doesn’t End the Day You Are Declared Disease-Free

As part of our October breast cancer awareness blog series, we will be publishing stories from our clients and who are (or have been) faced with a breast cancer diagnosis.

This blog is written by client Claire Spera.  At a young age she became the patient and then a caregiver. 

When I was diagnosed with breast cancer, I was 27 years old and alone at my gynecologist’s office. I didn’t have any family in Texas, and I was hardly expecting to get that kind of news, so I hadn’t brought anyone with me to the appointment. I’d found a golf ball-sized lump in my left breast two weeks before.

My gynecologist’s nurse practitioner, with whom I had an established relationship, gave me the results of my mammogram and ultrasound, explaining my imaging had come back as a BI-RADS Category 5—highly suspicious for malignancy. She began by describing the BI-RADS readings, from Category 0 through 5. By the time she told me I was a 5, I knew what it meant. Out of nowhere, I burst into shocked sobs. She told me I needed to get a biopsy done to be sure, but that if it came back negative, she wouldn’t even trust the result.

That was my “before and after” moment, a hard line drawn in my life. Before—a confident young professional who had, just a few months prior, gotten the job of her dreams and was working on repaying graduate school loans. After—a scared kid, feeling very alone, wondering if she was about to die before she even really got to live the life she’d imagined.

After the nurse practitioner gave me the news, the gynecologist came in as follow up. Business cards were handed to me for a surgeon and a fertility specialist—“preserving your eggs” was mentioned. I didn’t even ask why I had to worry about that. The Breast Cancer Resource Center was mentioned. I was too overwhelmed to ask more.

Once I felt like I had it together enough to drive, I left the office. As I was about to pull out of the parking lot, a young woman ran up to my window and knocked on it; thinking it was someone from my gynecologist’s office, I rolled it down.

“Please, could you help me? My battery died.”

Oh. Ok, yeah, I have cables.

All I wanted was to be out of there, to be home where I could collapse. I desperately wished my biggest problem was a dead car battery.

I told myself I was going to get home before calling my family. I only made it 10 minutes before I had to pull over into an abandoned business parking lot to call my parents. I could barely get the words out: “They say I have breast cancer.”

I called a friend after, and she told me to meet her at work so she could drive me the rest of the way home.

Then came the part everyone who has been diagnosed with cancer is familiar with: figuring out the staging and the treatment plan. When my oncologist told me I’d need to start with five months of chemotherapy, my mouth literally dropped open. I’d just been hoping to get a lumpectomy, or perhaps a mastectomy, and be done with it. I hadn’t even considered that I would need chemotherapy or radiation, but the whole nine yards was part of my plan, with 10 years of hormone therapy after I was done with active treatment. It was at that appointment that my oncologist said, “I’m sending your name over to BCRC.”

I got a call the very next day from BCRC while I was at work. I was lucky to have a walled office with a door I could close to take the call. On the other end was Patient Navigator Runi Limary, who told me she’d been 28 when she was diagnosed. I remember two main things from that conversation. Runi gave me a lot of practical advice to help me get through chemotherapy, as that was going to be my first step in treatment: one infusion every three weeks for 5 months. I didn’t know if I’d be able to work while undergoing chemo, and she told me it was a very cyclical process, saying I’d probably not want to work for 1-2 weeks after each chemo but that I’d start feeling better before the next infusion and could go back before the next cycle started. My parents flew out to Austin from California to take care of me in shifts as I navigated my way through the fatigue, nausea, weakness, mouth sores, skin rashes, dehydration, extreme diarrhea and—one of my oddest side effects—neuropathy in my throat, which made me feel like someone was loosely choking me at all times and made it hard to swallow.

The other thing I remember was Runi telling me about the Pink Ribbon Cowgirls, a BCRC support circle for those diagnosed at age 45 and under. She added me to a private online forum where I could post questions and read others’ questions and answers. I devoured the information, by now knowing I was going to do a bilateral mastectomy with breast reconstruction.

Two weeks to the day of starting chemo, I began losing my hair. My pillow was covered with it every morning, and it showered down on me throughout the day. It was time to shave it.  I told myself I wasn’t going to cry when I had my head shaved. It was just hair; I had bigger fish to fry. My best friend came over with her clippers, and we did it in my living room. She would later shave her head, too, in solidarity. My cat was lounging on the bed when I walked into my bedroom for the first time in bald-headed glory; I saw a distinct moment of terror come across her face before she realized it was me. As quickly as she panicked, she relaxed again. I was still me.

Throughout treatment, I attended BCRC’s monthly Pink Ribbon Cowgirl support luncheons and made a host of friends my age who were going through the same thing as me. We started our own private messaging group that we still use to communicate with each other to this day. Cancer doesn’t end the day you are declared disease-free, and we all live that reality.

I was also given the opportunity to participate in BCRC’s 6-week in-person support group for those newly diagnosed of all ages. That support circle was my weekly medicine—not the toxic kind that was going to eradicate the cancer from my body, but the healing kind that was going to give me the mental fortitude to get through it.

The speed bumps would keep coming, as they do for most of us going through cancer treatment: a choking incident due to the neuropathy in my throat; canceling my bilateral mastectomy the day before my planned surgery date because I got sick with a bad cold; going to the ER by ambulance the day after I got home from surgery due to passing out; taking a break from radiation halfway through because my skin was blistering so badly; getting a blood clot in my arm from the first hormone therapy I tried.

Then, the day I got my port removed and was officially done with treatment, my mom was re-diagnosed with breast cancer, 23 years after her initial diagnosis.

And still, BCRC was there for me. By extension, they were there for my mom, too.

I was able to pass along the post-surgical garments and homemade pillows BCRC had given me, and to share with my mom information and access to many resources I’d only learned about through BCRC. Runi called me personally every so often to see how things were going, and to make sure I was handling everything OK. In many respects, I found being the caregiver for my mom as she went through everything I just had—chemotherapy, surgery and radiation—even harder than being the patient. I wanted nothing more than to spare her the fear, the frustration, the pain of treatment. I wanted to make it all go away.

Just like that, I knew exactly how my parents had felt during my treatment.

The most incredible thing about BCRC is that they get it.

The BCRC thanks Claire Spera for sharing her story.  She continues to give back and have modeled for BCRC’s signature fundraising event Art Bra Austin. 

If you or someone you know is facing breast cancer and could use our support, please visit our website or call our helpline at 512-524-2560.
Consider making a donation to BCRC this October and give the gift that makes a real difference for the women in Central Texas facing breast cancer right NOW. Visit bcrc.org to learn more about how we can help, or click here if you wish to give back today.

 

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