“Flying isn’t fun anymore,” my brother-in-law frequently proclaims along with other travelers tired of security checks and crowded seats. I certainly agreed with him while I sat on full plane in New Hampshire for an hour waiting for clearance on my way home from visiting our children and new grandbaby. Flying definitely isn’t fun anymore for me because I have lymphedema.
No one explained it to me at the time, but I was at double risk for this condition that causes swelling because I had 24 lymph nodes removed when I had my mastectomy, and I had extensive radiation to my chest and lymph nodes. Sure enough about a year after my cancer treatment ended, one day I noticed that all the creases in my right wrist were gone. Wow Did I gain weight that fast? Nope, the creases were still there on the left wrist. The surgeon prescribed a compression sleeve to control the swelling.
The sleeve was uncomfortable and didn’t help much, but I did get a little better. The next time I saw him, my surgeon told me about a new therapist on the other side of the city who specialized in lymphedema. He would be happy to write a referral if I didn’t mind driving so far. An hour’s drive through Kansas City traffic versus living with lymphedema?
Having someone who knew the latest research about lymphedema made a real difference. She explained that compression sleeves can maintain progress, but they aren’t very good for reducing swelling. Most women need one that has been ordered to their measurements. An off-the-rack sleeve that doesn’t fit properly can make the condition worse.
Fortunately my lymphedema was still in the mild stage, so she taught me self-massage and bandaging techniques. The bandages wrap the entire arm and make me look like the Michelin man, but they have worked for me. For nine years, my lymphedema has mainly stayed under control. If my arm starts to feel a little tight or if I see swelling, I bandage at night and wear a custom-fitted compression sleeve during the day until it’s better.
I’ve had two summers where that wasn’t enough when I had to go for massages several times a week and wear the cumbersome bandages all the time except for showering. Getting regular massages is relaxing, if expensive. My insurance expects me to pay the $40 specialist copay for each one. But I consider myself lucky because my therapists have told me that not everyone is able to get lymphedema back under control, and my swelling has never measured higher than moderate on their scale.
So what does flying have to do with all of this? The cabin pressure changes that can make your ears pop on an airplane, can also affect lymphedema. Another problem of flying is that all that sitting also encourages fluid build-up. If I don’t remember to do some arm exercises, I can see swelling after a long car trip too.
My therapist recommends that I bandage before a flight and leave the bandages on for a couple of hours after I get off the plane. I used to bandage before I got to the airport, but since 9/11, I’ve found that I am more frequently subject to “random” searches when I go through security with a wrapped arm.
Now I carry my supplies with me and wrap at the gate. Part of me enjoys watching my fellow passengers’ covert glances as they try to figure out what’s going on. A woman who looks perfectly healthy takes out a plastic bag and lines up rolls of bandages in various sizes on the seat beside her. I watch them watch me as I tear eight little strips of masking tape and stick them on the handle of my luggage. I pull on a stockinette sleeve and adjust it. Then a foam rubber bandage goes over my thumb and wraps all the way up my arm. After the foam I have four more bandages to wrap, and then I’m ready to fly.
Whether breast cancer survivors who have not had lymphedema should wear a compression sleeve when flying seems to be a matter of opinion. If you had an axillary node dissection or if you had radiation to your armpit, it’s worth discussing with your doctor or a lymphedema therapist. My therapist says she sees a lot of women who had a lumpectomy and radiation who didn’t realize they were at risk for lymphedema because of their radiation.
If you had nodes removed AND radiation, then you are at double risk for lymphedema. You’ll want to be especially cautious, especially if you are on a long trip with multiple landings and take-offs, or are on a small plane that isn’t well pressurized.
On this trip, I debated skipping the bandages. Then I remembered that I’d be holding my new grandson when I got to New England. He’s definitely worth a few bandages. I’m going to be doing a lot of flying over the next few years to visit him, and I want that arm in good shape for hugs.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.