On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog. Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy. She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.
On that day of the LBBC Yoga on the Steps Fundraiser in DC, my sneaky triple negative breast cancer in fact was not gone, only as yet undetected. And that 95% chance of non-recurrence? Well, somebody has to be in that 5%. So much for my faith in statistics. In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . . .” Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes. In the world of Stage IV disease, I am very very early . . . my cancer is virtually in its infancy. And I have every intention of keeping it there. I am stunting your growth, you little b . . .d!!
Wrong assumption # 5: stage IV is a death sentence. I did not know that stage IV could be livable. I truly thought that—except in rare instances—stage IV patients were down for the count. I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)
I have just completed five rounds of chemotherapy, and am nearing the end of treatment. The chemo was actually less fatiguing and I experienced fewer side effects this time. I kept my hair, which shallow but true, makes me feel good about myself. And I really, really don’t look sick at all, unless one notices my port. I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago. It’s always something. But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%. These numbers I can handle. Hallelujah! Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this. Cancer, you’re going down.
Granted, I don’t always feel or act so tough. Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime. My lifelong goal will be to keep him away from the good body parts.
In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes. Albeit, I will do all of these things as a cancer patient. It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.
As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel. The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org. In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST. Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine. During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you. In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.