The adage is true… you can’t judge a book by its cover. I recently read an article that was shared on Facebook by a fellow cancer survivor. The article was about how people think that since you look “normal” after completing your cancer treatments that you must be doing fine. Sometimes that is just not the case.
Unfortunately, some of these cancer survivors are not thrivers but instead are metavivors. A metavivor is a person living with metastatic breast cancer. Many of these metavivors are still receiving treatment in some form, may have lingering issues from reconstruction or other surgeries, or dealing with any number of symptoms developed as a result of chemotherapy. I know a metavivor that has been fighting breast cancer for over twenty years! You would never know that she is suffering with so many medical issues stemming from years of fighting her metastatic breast cancer. She is truly an inspiration!
Thank God (modern medicine and Dr. Timothy McKee) my breast cancer is in remission and is not metastatic; but that does not mean I am “fine.” Not only do I have to deal with bone loss and memory issues due to the Anastrozole I am taking for the next six years, I also struggle at times with my mental health…some days are great; some days are not as great. But one thing I am constantly dealing with is lymphedema.
Lymphedema is swelling that occurs in your arms or legs. This is a result of having lymph nodes removed as part of cancer treatment to test if cancer has spread. The removal of lymph nodes results in blockages of the lymphatic system which is part of your immune system. These blockages cause the lymphatic fluid to not drain properly, leading the fluid to build up, which then leads to swelling. There are four stages of lymphedema and there is no cure. Not only does your arm or leg swell but is can also give you the feeling of heaviness or tightness and can cause achiness and discomfort. Fun huh?!?!
During my lumpectomy surgery to both breasts, a sentinel lymph node biopsy was done. Sentinel lymph nodes are the lymph nodes closest to the cancerous area and are the most likely ones that cancer would spread to first. To find these sentinel nodes, dye is injected into the tumor or affected area. The dye will travel the likely path the cancer would. The first set of lymph nodes it enters would be the sentinel nodes. Those lymph nodes are then removed to be tested for cancer.
The five lymph nodes on my left side breast and armpit area came back negative. Three of the five on the right side came back positive. Once it was determined that the lumpectomies did not have clear margins, meaning that there was still cancer present in the area, I was scheduled for a double mastectomy. At that time, an additional 12 lymph nodes were taken from the right side to be tested. Thankfully, those lymph nodes came back negative. Clear of cancer!
My lymphedema was noticed while I was getting radiation. I was still swollen from the steroids from chemotherapy, but radiation can contribute to swelling as well. I was scheduled an appointment with a physical therapist who specializes in lymphedema. She was wonderful! She gave me exercises to do, showed me massage methods to practice, and at one point I even had to wrap my arm at night to try and get the swelling down.
The most common form of treatment other than physical therapy is wearing a compression sleeve. I was fitted for one of them by a certified lymphedema specialist. Again, she was awesome as well! One good outcome about this whole cancer thing is that I met some really wonderful people along the way.
Now three years later, I can tell when my lymphedema is acting up. It is usually when I do something repetitive like vacuuming or lifting heavy things. So far, I’m lucky. My lymphedema is only stage 1. When my arm gets “angry” I wear my sleeve for a few days and usually it subsides. I take a swim aerobics class twice a week and I also do Qigong which has some great stretches to keep my arm flexible and helps move my lymphatic fluid. If the arm is not exercised and stretched it can lead to something called a frozen shoulder. This really limits the movement of the shoulder and arm and can cause inflammation.
There was only one time that I really worried and was concerned it was something more serious. About a month ago, I had a little cyst on my right side around where my ribs are. I figured it wasn’t anything serious but, as many cancer patients will understand, it didn’t belong there, so it had to go. It was a simple in-office procedure requiring only three stitches. Within 24 hours, my chest, arm and upper back hurt. Even to breath. I seriously thought I may be having a heart attack! But trying to think rationally, I contacted my lymphedema therapist. She did indeed confirm that anything traumatic like that, no matter how little I may think it is, can cause a major flare up. That put my mind at ease, but I felt miserable for about a week until it cleared up.
It is for that reason, if someone has lymphedema you can’t have any blood drawn or blood pressure readings taken on any affected arms. It is also recommended that if you fly you wear your compression sleeve(s) to help with swelling due to the altitude.
So, most of the time I’m ok. But it is funny how when I do have to wear my sleeve that people notice and ask what happened. Many are unaware of what lymphedema is and that can be a side effect of breast cancer.
I like when people ask me about these kinds of things because it gives me a chance to educate them about breast cancer and how important it is to get checked and that cancer has lifelong last effects. So, my book cover may look like it is in pristine condition, but it is the pages in between that really tell my story and story of other cancer fighters, survivors, thrivers, and metavivors. So, don’t be too quick to judge people by their outward appearance. They may suffer from other issues you are totally unaware of. Like Ellen DeGeneres says, “Be kind to one another.” The world needs more of that 😊