Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools—We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
Breast cancer survivor tries to decide if she is spoiled and ungrateful or, if like many cancer survivors, she just needs a little safety valve to blow off steam.
Pain. Pain. Pain and more pain. I am frightened by moments where I want to rip out my tissue expanders and just quit. That thought is my safety valve — my little emergency exit, my dirty little secret, and I hold it close these days. I have read that many women struggle with pain after a mastectomy! Why can't we manage this better? My husband notices tears in my eyes almost daily and wonders why.
It is now more than 18 days after my double mastectomy with reconstruction, and I still have lots of pain, physical and emotional. Every once in a while, I can get into a position for a short period of time that doesn't hurt if I don't move and if I don't take too deep of a breath. At that point, another part of my body gets sore and stiff, so that when I adjust to reduce the soreness, the attempt to move just starts pain all over again.
What pain? First, there is physical pain. There are incision pains on and under my breasts, a 5" scar across my back, and incisions where three drain tubes come out on the front of my body over my rib cage in three different places. There is soreness on the sides of my body toward each armpit and a burning, tingling upside-down triangle of skin where my cleavage once was. There is pain from what feels like an iron bra under my skin that digs into my rib cage and armpits. I am told this is from the tissue expanders. The tissue expanders seem to rub me the wrong way wherever they touch me - against my rib cage and even reaching out toward the surface when I move the "wrong" way and they "bite" the tender top skin.
I thought the breast area would be numb after a double mastectomy, after cutting and removing so many nerves. Right? Wrong. What is a good moment? As a child, do you remember making a "guitar" from a shoe box and rubber bands? That is a good moment with my expanders, when they merely feel like scrunched juice boxes held against me with big rubber bands on the top and the bottom. At those moments they are merely bulky and uncomfortable.
There is mental pain, too. I am not just sore. I am sore and angry and sad. Who am I angry at? No one. I am angry at the situation, and, well maybe myself. Why did I think I could do this? Even though I am very grateful for skilled surgeons and current technology, the whole thing is just really a lot to manage. To go through a double mastectomy and reconstruction is tough mentally and physically. Really, you take someone who is trying to fight cancer or to prevent cancer from coming back to the breasts and now this process too - all in a quest to get back to some kind of "normal"? I am weary. I am fed-up. I am sad. I am out of patience powder and it is still a long haul.
I feel loss. Yes, they were "just" breasts, but, well, they were my breasts and now they are gone. There is not a piece of clothing in my closet that fits my current body type with tiny breasts. My closet makes me sad. I am sorry for the rant and I feel the truth of my moment needs to be out there. I will get through this and I will vent when I need to vent. I hope this will help you feel less alone if you have gone through this or if you plan to go through this. You are not alone, and we are all here to help and support each other.