Lymphedema - OT Round 2

A little after three years post-surgery I began having swelling, pain, and redness at the surgery site as well as down the right side of my chest. A whirlwind of doctor appointments ensued to ensure the cancer had not returned. I saw the surgical oncologist, had a mammogram, and had an ultrasound. It was decided that I had sustained a minor injury (a scratch which became infected) while doing yard work. The doctor explained that any infection would be more likely to “set up” in the area of the scar tissue. I was placed on heavy antibiotics for almost four weeks when the inflammation, and swelling, finally began to ease.

Fast forward four months, and the redness, swelling and pain returned. This time my surgical oncologist sent me to an Occupational Therapist that works with the cancer center and specializes in treating issues that are caused by cancer and cancer treatments. It was at this initial appointment that I received a new diagnosis – Lymphedema. You have heard me say it before, and I will say it again, radiation is “the gift that keeps on giving”. The lymphedema, you guessed it, is a direct result of radiation damage. The bad news, it cannot be repaired. It is permanent tissue damage. The good news, it can be managed through specific stretches, clothing choices, and MLD massage. Once again, I found myself learning about a diagnosis I never expected. I drove 45 miles twice per week for hour long sessions with the therapist. We tried a form of cupping using a machine whose name I cannot remember, we tried blading, we tried stretches, we tried MLD massage, and we tried a mechanical pump…. In addition to all of these items I was told that I need to start wearing a compression bra during the day and (at least when the lymphedema is flared up) I will need to sleep in one as well.

Let’s take a small step back, for those unaware, lymphedema is (according to my Women’s Hospital “Living with Lymphedema” book) “ …a persistent swelling that collects in the spaces between tissues beneath the skin. This fluid can decrease the amount of oxygen that reaches the tissue. It can also promote infection be serving as a medium in which bacteria can grow rapidly…”

In addition to daily MLD massage, a type of self massage that promotes lymph node drainage, I have been given a multitude of restrictions. Here are just a few:

• Do not have injections or blood draws on the affected side

• Avoid heavy lifting on the affected side

• Take care to avoid bites and scratches that could become infected

• Wear compression garments daily

• Avoid prolonged exposure to sunlight

• Do not have blood pressure taken on the affected side

Learning to live with lymphedema is still new, as I type this, but is apparently somewhat common in patients that have had radiation treatments. Who knew? I certainly didn’t.

One thing is for certain, cancer treatments are more of a marathon than a sprint. Even three years after surgery and radiation I am being surprised with new side effects. I know of a lady that is eight years out from her surgery and radiation and she still battles side effects daily. If there is one thing I can teach others from my experiences, it is this: Cancer treatments and side effects do not end when surgery is done, radiation is done, nor when you hear “we got it all” from your doctor. It is an on-going battle, a daily battle (especially with daily medication side effects), and it can be a very trying battle. Lean on those around you for support when you are having a bad day. But also know that they won’t all be bad days, there are good days too! Rest if you must, but don’t quit!

And if you are not the patient, but know someone who is fighting the battle, be the strength they need on the hard days and celebrate the wins on the good days. After all, we are all in this life together.