Lessen learned: You have to be your own advocate and trust your gut feeling! By Lisa Jenni…
The lymphedema started already a few days after surgery, my shoulder/upper arm seem to swell up quite a lot on the back side, way more than the usual post-surgery seroma, and at a place where no surgical damage occurred. Asked about it, the surgical oncologist said nothing went wrong during surgery, and I’m unfortunately “on of them”. Soon, all lymph nodes, one by one down into the elbow area started to act up badly and each one was a very swollen painful bubble. I started to research the internet and found soon the Lymphedema Research Foundation. A private friend (RN) checked in with me on the phone and I told her how it looks and feels. There was a long pause on the phone, then she sent me all information she could find on LE, and recommended MLT immediately, but still it took weeks to get me an appointment.
January 20, I started my first round of chemo (of 4). At the first post-op visit, my medical oncologist was extremely surprised over the quick and high degree of my lymphedema. She said, she’s never had a patient with such severe Lymphedema. The shock in her eyes told me she’s at a loss, but immediately took to the phone and got me 10x MLD prescribed and some kind of over-the counter stocking for the arm with a clove. Looking back this was a ridiculous wimpy approach to my booming lymphedema. Two massage therapy sessions per week (really?) – are NOT even covering the beginnings of the dilemma. I was repeatedly told I need to wrap my arm 24/7 and rest it hand high up. Of course a part of it was teach me how to do the self massage, but to be honest, the only thing that happened was, I got really bad tendonitis on the one healthy arm I had left. I started panicking, – I felt so lonely, stupefied and helpless like never before. But still, my gut feeling told me, time is of essential, despite the very slow grinding mill; it took until end of May until I got my first manufactured-to-my-measurements garment (Jobst).
At this point, I was in scrambles. Even worse, by now, the impact of chemo had me completely overrun, and no matter what I did, the swelling kept creeping up uncontrollable. My arm looked like a balloon and the skin felt if it swells only a bit more, it’ll pop open. And I knew, radiation would follow, 35 times beaming into an area of my body already deeply compromised.
Due to our move to the US, I experienced long 5 years of having no work permit until I got the Green Card, so I went back to art school, started quilting and went back to my roots as a watercolor artist, founded think-quilts.com. Now self-employed, I didn’t exactly loose my job due to lymphedema, but there was also zero chance to get employment if I wanted to. Within a few months, I became a disabled person without access to benefits. Never mind, just before the recession hit, we bought a smaller house, and at the exact time of my diagnosis, the bottom of the economy fell out, we just moved and had our old house on the market, on top of it, even my husband’s job at the big high-tech company wasn’t safe anymore. An air of deep depression engulfed both of us.
The weather in 2009 wasn’t cooperative: That particular late spring and summer created the most intense heat wave ever recorded in the Northwest. We had weeks during that summer with triple digit temperatures 103F, 104F and climbing. Everyone enjoyed “for once not a rainy summer!”, for me it felt like a death sentence. The Pacific Northwest has usually a moderate climate with only a few very hot days (mid 90’s), so most houses don’t have AC. I was suffering badly. Heat is a great enemy of lymphedema.
At some point after radiation ended and the effect of chemo lessened, I gained some brainpower back. I found at my local fitness club a personalized 16-week program (incl. psychological support), which is designed to put people with a heart decease, obesity, or after accidents back on track. I asked my oncologist if she could write me a recommendation, so the insurance would pay little less that ½ of the cost ($6400 total), and it was granted. I called it “Cancer Rehab” which doesn’t exist for real, but this was the best that happened to me in a long time. After finishing the program, I’d lost 50+ pounds; I gained back my strength and was physically fit to actually enjoy the upcoming skiing season.
Having gone thru hell and back, this should be a standard for all cancer survivors who endured all three phases: Surgery, Chemo and Radiation. As of today, only heart disease, stroke and accident patients are getting scheduled for rehab.
My lymphedema lessened bit by bit in micro-steps during the personal training and diet. Please note, before I ever stepped on any treadmill or held any weight in my hand for lifting, I religiously wore the fitted Jobst sleeve (even I hated every second of wearing it). I am certain, the weight I lost made a big difference in circumference of my arm, and since there was less of a layer of fat, the compression garment worked better. These garments apply pressure to the whole limb, but the transport of lymphatic fluids only works via lymphatic vessels and veins, which are embedded into or closely attached to muscles. The more you move your muscle mass, the more “stimulation/massage” happens to the lymphatic system. Its easy to understand how a layer of cushioning fat can limit or eliminate this effect. This is one of the main reasons why a skinny person will have more success with any of the compression garments and MLD. Soft-cushioning fat is your enemy.
Here a word about the compression garments for arm and hand
Every single sleeve made to my specs was manufactured by the German company Jobst, – and this is supposed to be the “Cadillac” of these sleeves. I say, no way!
The knit fabric is itchy like hell, and I’m sure the clove part hasn’t seen any improvement since it’s invention. All wrong! I’m a painter, I’ve studied the human body in drawing; I do know how a hand looks like. The anatomy of a hand has a “webbing” were the fingers come out of the palm, and by close inspection seen from the top, it is a triangle slowly widening toward the knuckles. The inside-end of the webbing is delicate skin in order you can spread out your fingers like a V. For ages, every Italian fine leather clove maker knew how to add a little triangle on the top to the finger root for ease and comfort. But not the way the compression gloves are knitted. It always cuts sharply and painful into the delicate inside webbing, and leaves a triangle gap towards the knuckles to be perfectly filled with lymph fluid.
The arm sleeve has it’s own challenges besides being itchy, it doesn’t discriminate between areas where more pressure is necessary and areas they should stay flat. The arm below the elbow is not round! It’s a rather flat oval between two bigger bones, and most lymphatic vessels run in the groove between these bones, together with the blood vessels. The sleeve makes the area filled up with non-moving lymph fluids, with the result, the lower arm and had look like you’ve blown up a rubber clove with air and made a knot. This turned out to be completely counter-productive for my arm/hand, so I stopped wearing it during normal day activities.
As the years went on, changes in medication prohibited me of any exercise for months at a time, and sure enough, the pounds started creeping back on me. Little by little, despite the fact I tried to live healthy, and efforts to get slowly back into regular workouts and cook from scratch healthy food, – low-fat protein, lots of veggies and fruit, minimized carbs, rarely sweets, no junk food. We go hiking in summer, skiing in winter, but I couldn’t stop the lymphedema from progressing.