Hello friends, as always, it’s good to be back with you this week. This is a milestone for me – my 20th blog post! Thank you all for following my story and supporting me on my cancer healing journey. I’m writing you today from the beautiful, picturesque mountains of Vermont, where I’ve come for a few days of intensive therapy for my lymphedema, one of the side effects of my treatment for breast cancer. My one and only amazing brother Derrick, a professional musician and music teacher from Baltimore, is with me – so it’s an excellent opportunity to spend some quality time together bonding as brother and sister.
Today I want to share with you about a condition I have called lymphedema. What is lymphedema? Lymphedema is a collection of fluid that causes swelling- also known as edema – in the arms and legs. Often, this swelling can be due to surgery to remove lymph nodes, which usually takes place during treatment for breast cancer. Lymph nodes exist throughout the body, but the largest groupings are in the neck, armpits, and groin areas. Often when a woman has breast cancer surgery, the lymph nodes under the arm on the side where the cancer is are removed to see if there is cancer in them, which was the case with me. 13 lymph nodes were removed from my right armpit, and 4 of them were found to be cancerous – meaning that at the time of my initial diagnosis in 2000 the breast cancer had already spread beyond my breast itself, although it was not in any organs or bones at the time.
Whenever lymph nodes from your armpit are surgically removed, there is up to a 40% chance of lymphedema occurring. Having radiation therapy, which I did, can compound one’s risk. Unfortunately, there is no way to predict who will develop lymphedema and who will not. Lymphedema compromises the functioning of the lymphatic system, which works in harmony with the immune system to clear our bodies of unwanted bacteria and foreign substances.
To reduce the chances of lymphedema developing, one should minimize the pressure on the affected arm. I must take the following precautions: not carrying heavy bags, no injections or blood draws, and no blood pressure should be taken on the arm where lymph nodes were removed. Also, it is recommended that if you have a massage, the masseuse should stay away from the area around the armpit where the lymph nodes were removed, because deep tissue massage could inadvertently provoke a disruption in the flow of the lymphatic system, thereby causing lymphedema. For me, everything was fine for about two years after my radiation ended. I decided to treat myself to a massage and subsequently noticed that my right arm was a little swollen.
After that, I went to seek therapy. My case was mild then, and the recommendation was for me to wear compression sleeves during the day. Compression sleeves are elastic garments that resemble ladies’ stockings. The purpose of these garments is to keep the swelling down and encourage the flow of lymph fluid out of the affected limb. Currently, there is no known cure for lymphedema, and it tends to progress over time. Over the years, I have had multiple additional therapy sessions every six months of so, consisting of five-to-ten-day manual lymphatic massage drainage sessions performed by trained lymphedema therapists. After these treatments, I then get custom-made compression garments to wear during the day, and specialized, padded ones to wear at night as well.
Up to this point, I’ve only been talking about the swelling in my right arm. Unfortunately, about three years ago I also developed lymphedema in BOTH of my legs. I developed my condition after undergoing radiation therapy to both my right and left pelvic regions for the cancer in my pelvic bones, which I deeply regret to this day. About three months after the radiation ended, I noticed swelling in my right leg. About a month after that, the same thing happened to my left leg. I was stunned because I had not been told overtly by my then-radiologist that lymphedema was a possible, if not probable side-effect of radiation on my pelvic bones. I’ve been living with this condition for over three years now, and it is a daily inconvenience and annoyance.
Although it does not cause me any pain, it adds time to my daily routine because I must carefully put on my custom-made leg compression garments and my customized arm and hand garments. In the fall and winter, wearing these garments is not as much of a problem because the weather is cool. However, in the summer, it is frustrating and HOT to have to wear leggings on a daily basis underneath my dresses and skirts to control the swelling. Note: the purple garments are my nighttime ones. The daytime compression garments resemble the arm sleeve shown above.
What does all this have to do with where I am currently on my healing journey? I’m here in Brattleboro, Vermont having innovative lymphedema therapy with a therapist recommended by my naturopathic doctor. The treatment uses a device made by Arrowhead Health Works. The device works using forms of energy frequencies, light, and sound in conjunction with massage, and has been shown to be 3 – 4 times more effective at reducing swelling than manual massage alone. My first session was yesterday. It was relaxing, and I’m happy to report that noticed results right away! I have two more intensive sessions scheduled for today and tomorrow, and I’m looking forward to the reduction in swelling in my arm and legs.
I have metastatic breast cancer. The burden of breast cancer is already a lot, but to have it compounded by lymphedema in my arms and both legs is extremely wearying. Sometimes when I’m home all day, I sit up in bed with my legs and feet elevated, and work from there so as not to have to put on my garments.
When I’m out and about, walking around whether inside or outside, I must wear daytime compression garments on my legs. If I do not wear them, the force of gravity quickly causes the fluid to move down and the leg swelling will increase if not contained by compression garments. In an ideal situation, people with lymphedema wear their garments almost 24 hours a day – daytime ones during the day and nighttime ones while sleeping. As you can see, it is a chronic problem that requires ongoing attention and treatment; it is a part of my daily life.
I hope you’ve learned something about this condition called lymphedema that affects many persons who have had cancer. Although not hidden to those of us with the condition and our loved ones, it is most likely very hidden and unknown by others. I hope to update you next week about the next steps on my cancer treatment journey. My research continues, and I am receiving expert medical counsel and advice from members of my health care team. I appreciate your continued prayers and well wishes, and I look forward to talking to you next week!