damn it all….lymphedema and life

Damn it all. I think I am getting to that age where stuff just happens…to you…to me…to everyone around us.

I had been feeling a little sad sack about myself because well….I am back to physical therapy. My balance is a little wonky at times. And this summer I seem to have developed slight and light lymphedema.

What is lymphedema? Swelling in an arm or leg caused by a lymphatic system blockage.

Lymphedema is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

If you have had breast cancer and you have had sentinel lymph node or any lymph node removal, you know all about this. And fear it. It can be brutal and a little painful because of the swelling.

I had slight lymphedema in my left arm after my breast cancer surgery. Then nothing ever again.

Things I was never told about lymphedema or just even having the sentinel node removed include that I should have had myself fitted for an arm sleeve for travel especially flying. Why? Read here off of Penn’s website (note I am a Penn patient):

There has been a longstanding controversy regarding the use of prophylactic compression garments following lymph node dissection during air travel. The Casley-Smiths reported that 6% of lymphedema patients initially develop swelling during or following air travel. This has supported the practice of wearing compression class I garments on limbs at risk during extended airplane flights.

The physiological rational for this practice is the increased movement of fluid across blood capillary walls when tissue pressure decreases. Pressure exerted by the body’s tissues opposes the leakage of fluid from blood vessels. This pressure is important in maintaining a balance between the leakage and removal of fluid. If too much leakage occurs, chronic swelling can develop. When we are aloft in an airplane the cabin is pressurized. Cabin pressures are significantly lower than the atmospheric pressures we normally experience. When atmospheric pressure drops, so does our tissue pressure. They are directly related. As tissue pressure is reduced, there is greater movement of fluid from blood vessels into tissue. Consequently, fluid may build up to the point that it exceeds the transport capacity of the lymphatic system. Most people develop some degree of swelling if they fly for a long enough period. For example, we generally have difficulty donning our shoes once we’ve landed on the other side of the Atlantic. Our feet have swollen. People with compromised lymphatic systems will have greater difficulty removing the extra fluid and remain swollen for longer periods of time. If they fail to receive appropriate treatment, they may remain permanently swollen. Only the territory drained by the resected or irradiated lymph nodes is at risk. For example, a woman who has undergone dissection of the lymph node in her armpit will only be at risk for swelling in her breast, arm, and upper trunk (on the side of the surgery). The rest of her lymphatic system is intact and should be able to adequately drain fluid from all other body parts…..The current recommendation of the Lymphedema Service at the Abramson Cancer Center of the University of Pennsylvania for patients who are at risk but have NO history of swelling is to wear a Compression Class I sleeve during flights greater than 3 hours. All patients who have had an isolated episode of swelling should wear a sleeve regardless of the length of the flight. All patients with chronic lymphedema should wear a sleeve or apply compressive bandaging during ALL air travel. The sleeve should be donned before the airplane cabin is pressurized. This can be done at the airport gate or on the plane prior to take off. The sleeve or stocking should be worn for a brief period, 1-2 hours, after landing. A trained professional must fit compression sleeves. Your hospital may have a physical or occupational therapist capable of fitting compression garments. Alternatively, many surgical supply or durable medical equipment providers employ trained fitters. It is important that you contact your insurance company first since they may have contracted with a particular provider. ~ Dr. Andrea Cheville

I never ever knew ANY of this until a few months ago. How it came up is I was speaking with one of the physical therapists where I go about life after breast cancer. She deals with a lot of lymphedema patients. I never knew until I was there post knee surgery. This therapist works with patients on specific exercise regimens. I never even knew because no one told me there were specific physical therapy regimes available for breast cancer patients.

Honestly, I feel kind of dumb I didn’t know. But now I do and I was fitted for a sleeve for travel and flying. I also have this great booklet from Chester County Hospital (which is part of Penn) of exercises.

When I am at physical therapy now, I am wearing athletic socks with slight compression capability. There are these socks available so you don’t feel like your only option are Grandma’s old compression stockings.

I don’t like the balance issues so I am working to rectify them. But some on my care team are starting to wonder given the addition of slight lymphedema in my left foot and ankle, balance issues, and the worst hot flashes yet if this isn’t slight Tamoxifen toxicity. I have two years left to take it. Please note I will take it all 10 years. I am not a good candidate for aromatase inhibitors and I am not playing Russian roulette by going off everything. So I will continue to suck it up.

I have a “Thou Shalt Not Whine” sign. Obviously I am ignoring it.

A week ago someone I have known since my early twenties just died in his sleep. His wife is living with stage 4 metastatic breast cancer. Not to sound trite but that is one of those life is unfair moments I am having a hard time processing. The service is today and I am wrestling with going. My sad trigger post breast cancer is death and funerals. I know I should go and I will go but I don’t want to say goodbye to yet another part of my youth.

F@ck. Yes I cursed again. Perhaps I need a “Thou Shalt Indeed Whine And Curse” sign instead.

And then there is this other thing. Someone else I have known forever (especially if you calculate the years in dog years which is over 300), texts me yesterday. They ran into a mutual friend so she wanted me to hear it from her. She’s a breast cancer survivor too so I think I literally stopped breathing for a moment before I read her whole message. She was diagnosed with glioblastoma a couple of months ago and has been undergoing treatment. That’s brain tumors in plain English.

F@ck F@ck F@ck.

Come on God and the higher powers. Enough already.

Why is it when you hear things like this you remember drunken summer nights dancing and raising hell? Is it a subconscious desire to be young and immortal again?

Perhaps. But my friend is responding well to treatment, has a plan, and is super positive so I am getting on board. But it’s still a shock to the system.

Life is a long strange road indeed. With testing along the way that makes you pause and reflect. I am a goddamn lucky woman and I love my friends and family. But damn. We aren’t 21 anymore. But the reality is do I really want to be 21 again? Probably not. But adulting has it’s challenges, doesn’t it?

Live your best life. That is the best that any of us can do.

About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
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