I don’t often tell my entire breast cancer story all at once. I usually share just bits and pieces of it. This afternoon, I talked about a few chapters with a fellow mommy while waiting in a doctor’s office. It turns out while I was being diagnosed with cancer three years ago, this woman found herself in a serious car accident. We talked about physical therapy, our long lists of doctors, our respective survivals. Our chat was short and sweet—and powerful.
This morning, I told my whole story. I talked about diagnosis, surgery, chemotherapy, hair loss, radiation, drug therapy, counseling, anti-depressants, hospitalizations, and doctor relationships. I talked about my hopes, my fears, my attitude, and my state of mind every step of the way. It took more then one hour of phone time to pour out every last detail for the researcher who will somehow use my information to help better the business of cancer. Our chat was long and involved—and powerful.
Talking about cancer is emotional. It forces me to revisit my travels with a life-threatening disease. It also helps me appreciate how far I’ve come, how well I’m surviving, how important it is to talk.
I told my researcher guy today that I’m willing to talk about anything related to cancer. Sure, I could be private about it all. I could keep my information inside. But I figure that doesn’t do anyone any good. Talking—and writing—about cancer is what helps. It helps me. I hope it helps others.
If you want to know something about cancer, especially breast cancer, ask me. My information is yours for the taking.
On Saturday, my mom and I attended a half-day seminar on the topic of breast cancer. It was sponsored by Shands Hospital and many of the speakers were my own medical people — a surgeon who took my blood prior to my lumpectomy for research purposes, an oncologist who treated me both times I was hospitalized during my first chemo regimen, my physical therapist, and the woman who coordinated my initial care when I was first diagnosed. I already knew a lot about what they talked about but I learned that there is a lot on the horizon for breast cancer detection and treatment — like new radiation techniques that can limit the treatment time from seven weeks to just one week and methods for detecting the smallest trace of breast cancer before it begins to grow. My physical therapist is studying cancer-related fatigue (I think I have it!) and how to manage it. It amazes me that these medical professionals are spending their work days seeking cures and miracles. What a huge responsibility. What a noble cause. I am lucky to be in their care.
But after hearing about all the science and hope and possibilities, I am reminded mostly of one loud and clear message I heard on this day. The oncologist spoke about the components of breast cancer tumors — there are about six criteria that are taken into consideration when studying a tumor, such as age, stage, grade, lymph node status, hormone receptivity, and HER-2 status. My criteria are: age 34 at diagnosis, stage 1 (out of 4), grade 2 (out of 3), lymph node negative, ER/PR negative, and HER-2 positive. Some of this is good; some not so good. A balance that has left me feeling okay about my personal situation. But the oncologist said, “even a good tumor in a young women is a bad tumor.”
I guess I knew this. My age is what qualified me for aggressive treatment — because young women have the most aggressive tumors. But to hear it spoken in a formal teaching setting, and in somewhat of a grim tone, is troubling. But I’m OK. I’m not wounded by this bit of information and I’m not anxious like I once would be. I still feel like I am winning my battle, so I can take this in stride. And if cancer comes back to me one day, I’ll just keep fighting — like this young woman who is quoted in the book, “Hope Lives: The After Breast Cancer Treatment Survival Handbook.”
“Why do I keep going through treatment when there is no permanent cure? I ask myself this every time. There are no options other than death, which to me is no option. It’s not that I fear death. I really don’t anymore. I just love life too much to quit. It’s a race against time. Treatment buys me time until they come up with new drugs or new ways to treat this illness. I’m not quitting.”
Robin, age 38, diagnosed 1996, 1998, 1999
Yesterday I went for a physical therapy consultation. My therapist specializes in lymphedema which is a swelling of the arm that results from the removal of lymph nodes during a lumpectomy. I had four lymph nodes removed so I am risk for this condition. It can be a mild swelling or it can be quite obvious. It is usually permanent so therapists try to address the condition before it happens. There is no real prevention for it but awareness is still important. And radiation therapy can contribute to the swelling because it damages the effectiveness of the lymph nodes — which work to drain fluid from the body. When some are missing and others are damaged, fluid can build up and cause swelling.
I have a low risk of getting lymphedema — four missing lymph nodes is not so bad — but I will still be monitored. So yesterday I had my arm measured. My affected arm (left) was a tiny bit larger than my right arm but this is not significant right now. I was given some exercises to do at home to maintain good range of motion — I feel some tightening in my armpit — and I need to purchase a compression sleeve to wear on my arm if I experience swelling or if I ever fly on a plane. It is not recommended that I lift more than 15 pounds with my left arm (Danny weighs 30+) and I cannot ever have my blood pressure checked on this arm — or have a needle stick or any other procedure that could affect the flow of blood and fluids.
I will go back to physical therapy in two weeks and will be monitored throughout radiation — which is 1/3 of the way done now.
I just completed my 10th radiation session and have 23 to go. It is making me very tired but I have not experienced any skin irritation yet. I am prepared for something to happen in the next week or so. I am applying aloe vera gel and calendula (an ointment made from a flower) to treat my skin. When the burning occurs (which is expected), these will soothe my skin. I was told not to wear a bra throughout the whole radiation phase — or to at least wear something that is not tight or restricting on the skin that is being treated. Today I am wearing a bikini top because I have not found anything else that works. Since I can tie the string that goes around my back, I am able to adjust the tightness and pull it low enough that it doesn’t touch my affected skin. I tried jog bras and tight camisole shirts and wearing nothing at all. I am not comfortable without any support so I hope the bikini works out.
So now I am struggling to find the best bra and the best support — exactly what I was doing up until 1996 when I had a reduction surgery. And I thought then I was forever free of this problem. You never can tell what lies ahead.
I had a consultation today with my radiation oncologist. I will begin radiation soon — maybe next week — and then if my genetic test comes back positive and I opt to have a bilateral mastectomy, I will just stop the radiation (without breasts, there is no need for radiation).
I am not so worried about radiation, although there are still side effects. I may feel tired. And I may experience skin redness, burning, itching, and irritation. Since I tend to burn in the sun, I am likely to burn from the radiation. Long-term side effects include damage to the heart, lungs, and ribs since they all are located near my breast and will be exposed to radiation. So I’m learning over and over again that to survive cancer, I must accept other potential health issues in the future. One author wrote about cancer patients that we should all be so lucky to live 20 years to have a heart condition.
There is a possibility of an arm condition as a result of having lymph nodes removed (I had four removed during my lumpectomy). This condition is called lymphedema — a swelling of the arm that can be permanent. My arm is not swelling, but I am being referred to a physical therapist who will work with me on exercises to help prevent the swelling. Doctors are trying to be more proactive about preventing it and not just addressing it once it occurs.
So radiation and physical therapy are on the horizon. And my blood test results should be back in 2-3 weeks. Then I will know if a genetic mutation is to blame for this journey.
What a crazy journey it is.