Taking on 21 years of treatment side effects
I have realized that my long history of breast cancer survivorship has come with a caveat: While I am above elated to be a lot further along this path than I could have ever imagined that I would be at this point, I know that the countless cancer treatments have wreaked havoc on my body in the process.
I started receiving my first line of treatments for an early-stage breast cancer diagnosis in December 1998. This was less than a month from me giving birth to my youngest daughter. While my body was adjusting to one major process, it was flipped into high gear to deal with another major task. After eight cycles of chemotherapy treatments, a mastectomy followed by a TRAM flap reconstruction surgery, and 5 weeks of daily radiation, I thought that my body was set to return back to business as usual once I finished this cycle in 1999. Well, that was the thought process of a very energetic 32-year-old, who did not have much of a clue as to what really was to follow.
A new diagnosis
Just 2 years after this rigorous journey I was diagnosed with metastatic breast cancer in November 2001. I was then faced with an aggressive line of treatments which included receiving treatments on a weekly basis along with injections to help build my white blood cells, which would be depleted by those same aggressive treatments. This process hit me hard. I plainly remember thinking how a 34-year-old could feel so much older in such a short time frame. The treatments forced my body into early menopause and the joint pains came rolling in like a never-ending cycle. I was pretty much knocked down to my knees! Not only could I barely play with my daughters — who were only 3 and 5 at that time — I had just enough strength to make it from my bedroom to the couch in my den. Some days even that was stretching it.
The cancer had rapidly spread throughout my body in just 2 short years, to include my bones, lungs, liver, spine, abdomen, and brain. I was in unbearable pain from all the scar tissue that had formed in my body due to constant chemotherapy and radiation therapy plus multiple surgeries. Neuropathy also became a problem. I could barely walk at times. The sharp, jolting pains in my hands and feet caused me to feel somewhat isolated from the lifestyle that I was accustomed to. At one point, I remember sitting on the edge of my bed, too weak to walk to my en suite bathroom, so I got down on the floor and crawled there. I felt very broken at this point. Mild depression was beginning to set in my mind. I remember feeling that my life could not get any worse than that.
As time went on, more aches and pains started forming in my body. I started noticing a lot of hip pain, but I tried to bear it and just go on with life. That thought process worked for a while, as I started physical therapy to help me walk better without limping. After procrastinating for a while and trying to avoid additional surgery to my already frail body, I had additional scans done that revealed my right hip had avascular necrosis, a deterioration of bone tissue caused by ongoing treatment.
Managing pain and long-term effects
At that point, there was no way around it, I could not go any longer with this type of deteriorated hip, and of course, the type of pain that I was experiencing along with it. I had to have the hip replacement surgery that I was trying so hard to avoid.
I often refer to these side effects as my battle wounds and they serve as constant reminders of how the effects of metastatic breast cancer treatments can be a whole other beast to deal with. Going into my metastatic journey, my main goal was to treat my diagnosis as aggressively as I could so that I could have a greater chance at life, as well as having a chance at raising my daughters, who were babies at the time of my first diagnosis. My focus was on them more so than on myself. I remember having bursts of strength at times, just because I knew that my babies needed me to be strong. Even while fighting for my life, I was a mother first and this mother felt that she had to do all that she could to be in her daughters’ lives.
Reflecting now, the focus of dealing with the possibility of long-term side effects was not on my mind at all. I had adapted to my circumstances. I remember just wanting to get through my diagnosis, one day at a time. My diagnosis was aggressive and there was not much hope I would live to see long-term side effects.
For my type of breast cancer, I will be on some type of treatment for the rest of my life. So, now what? It is putting a game plan in motion to deal with the onset of those painful side effects that will come along because of metastatic breast cancer treatments. I have learned how to manage my pain to a level that makes it bearable for everyday life. I had decided a long time ago that I was not going to give up on my diagnosis because of my babies, so giving up was not an option! Well, my daughters are not babies anymore. They are now young adults who can take care of themselves. This really is about me going forward.
I feel that I would be doing myself a disservice if I did not provide myself with as much self-care as I possibly can, so that I can be a better me. Furthermore, how much help or support can I be to others if I am not seeking the help that I need? I continue to stay active daily, to take a walk or work in my garden. I even cut my grass to get exercise. I have also incorporated yoga into my routine to help with pain management. Massage therapy and a warm heating pad continue to help with the painful area in my right shoulder, where scar tissue resides due to numerous treatments. Some type of physical therapy will always be on the list, as it has helped me in the past.
As for my mental health, I enjoy traveling, especially road trips with my daughters, as we are always trying to explore new places. Trying to catch a beautiful sunrise or sunset on the beach is normally top on our list — just being around a body of water is healing to my soul. No, these regimens have not stopped my pain, but they make the pain bearable so that I can enjoy a quality of life that I can deal with.
Terlisa Sheppard, 53, was diagnosed with metastatic breast cancer in 2001. She lives in Orlando.