compression sleeve | The Best Worst Case

Cancer – and the aftermath of cancer – doesn’t go away. I may look better and feel better than I did last year, but cancer is with me every single day and my body is still struggling. I’ve never operated at less than 120% physically, and now I’m at a permanent 70-80%. It’s depressing. I have to think about every movement my left arm makes: can’t have it below my heart too long, can’t have anything restrict it, can’t have it above my head, must be aware of restrictions even though I can’t feel most of it since it’s numb, can’t sleep on the left side, must remember to wear compression sleeve, can’t lift heavy objects (what is considered a heavy object?) The list goes on and on. Who doesn’t take their body, their limbs for granted? Why would we ever worry about not lifting, not walking?

People have compared my cancer to breaking a bone, appendicitis, getting the flu, or getting stitches. They’re somehow trying to relate to what’s happening for me. But you typically recover from those things and you usually never need to think about them again. Twenty percent of my body is disabled. Forever. I don’t wake up and ever feel 100%. This wasn’t a skin tag removal so please don’t compare cancer to everyday maladies.

The damage is physical and, I hate admitting this, but it is psychological as well. There is definitely some PTSD going on here. Giant waves of paranoia, fear, and helplessness crash over me multiple times a day and drag me into a black hole. And I’m hard on myself about it. I tell myself to get over it, that I’m being pathetic, that it’s not so bad, that I’m just feeling sorry for myself, or this very ugly one: that somehow I deserved this. I am horribly mean to Leah.

Coming to terms with cancer is going to be a lifelong journey and it’s a crappy, crappy road. I keep searching for a silver lining that doesn’t exist. I suck at ‘living every day to its fullest.’ I am not a grass-is-greener-bright-side kind of girl; that will never be who I am. I am a Reality Girl driven by half facts and half dreams.

The amount of cancer related appointments I continue to go to is never ending. In the last two months I’ve had visits to my oncologist, radiology oncologist, gynecology oncologist (more on that in another post), physical therapist, general surgeon, and breast surgeon. There are reminders on the calendar screaming at me that cancer is in the room, every day, every week.

None of my doctors has declared me “cancer free.” They say, “We certainly hope you’re cancer free, but with HER2 receptors and lymph node involvement we can’t say for certain.” With each new ache or pain I stop and ask myself, am I ok? Is the cancer back? Has it metastasized? When should I worry about a new symptom? My radiation oncologist says I should worry if something increasingly worsens or is persistent. His words become my mantra when I have a pain, ache, or visual changes.

Writing feels like therapy for me. If I spew it out without holding back, with no filter, no end or beginning, no thought of where I’m going, maybe it will be easier to walk into the black hole of the future and away from the black hole of the past.

I met with a radiation oncologist in Rochester on Wednesday and she recommended I get radiation five days a week for six and a half weeks.

Every doctor so far has said the same thing to me, “You’re too young for this.” This doctor was no different. Her reasoning for radiation was solid: I’m young, my cancer was multi focal (which means I had multiple tiny tumors throughout the breast tissue), I’m estrogen negative, there was lymphovascular invasion, and the cancer is high grade.

My struggle and hesitation to get radiation is mainly about one thing: the risk of lymphedema in my arm. I feel like I’ve dealt with cancer, mastectomy, and chemo pretty goddamn well. I have adapted as new things have come up. But limit the use of my arm, and it may push me over the edge. It could very well tip the scales a little too much towards darkness and depression. Could I adapt to limited use of an arm? Of course, this is what we all do, adapt to our environments. This is how we survive and evolve on the most primitive level as a species.

But this could be a difficult adjustment for me. I have already been experiencing mild swelling in my wrist and hand these last few weeks. Radiation will further compromise my already compromised lymph nodes. It will scar and damage the remaining healthy lymph nodes it comes in contact with which could limit the flow of lymphatic fluid and increases the risk of more swelling.

There are things that I am doing to manage the swelling: wearing a compression sleeve and gauntlet, holding my arm above my heart several times a day, lymphatic self-massage, and physical therapy which I will start after chemo is over.

It comes down to the word “limit.” I don’t like that word. I don’t like the implications. I don’t like the sense of not having any control. Not that I truly have control over anything. Maybe this is what my struggle is about – letting go of control and accepting my limits.