This is another post from the draft vault. Written May 2014 a few weeks after my mastectomy and never posted. Though I have written more on the theme of this piece since 2014, I post this now, at the two year anniversary of my surgery, in service to all those who are wrestling with their own feelings either in the run up to, or the aftermath of, a mastectomy.
It wasn’t expected by my doctors for someone at my stage and subtype of cancer to have a pCR, a pathologically complete response to the neoadjuvant treatments. The unexpected results of the pathology report inspire mixed feelings. Though I am very happy to be an outlier, because what the surgeon removed was no longer filled with tumorous cancer tissue, there is some emotional work required on my part to come to terms with having had surgery at all.
In particular I had hoped to keep my lymph nodes, and did a lot of visualizing around their health. Which worked beautifully. Except there was no way of knowing that ahead of time. The screening tests of western medicine are not accurate enough. The MRI I received weeks prior to surgery no longer showed lymph tumors, which encouraged me to negotiate a plan with my surgeon to keep the lymph nodes.
This plan failed when scar tissue in the lymph channels prevented the surgical dye from identifying sentinel nodes. The surgeon decided to remove the axillary nodes – which is basically all of the fatty tissue in my armpit. This is standard of care with someone with my initial presentation. The tumors in my lymph nodes were noted clinically at diagnosis- which means you could feel them with your hand, and the biopsy and various scans showed extensive cancer-ing activity in my axillary nodes. My initial diagnostic pathology in December showed very robust growth rates within my diverse tumors. Both traits generally seen as very bad. For all these reasons the nodes were removed.
So, though it might be argued that there was no need to remove my breast and lymph nodes – as the pathology tests done post surgery show that there was no longer any cancer activity within – it doesn’t change what is. There is no going back. Which leaves me moving forward very grateful to be on the far side of the bell curve, surprised to be okay right now with the loss of my breast, and at the same time needing to do some emotional adjustment to accept the loss of my lymph nodes.
Sorting through how I might be feeling is a whole lot easier knowing there are multiple, possibly conflicting feelings at play in any given moment, and that I can feel strongly about something without diminishing the validity of what another person might be feeling about their own situation. Getting to this point has necessitated wading through a lot of guilt, that obscures how I am truly feeling. As if having some good news means I am no longer eligible to feel any hard feelings. There is this subtext I keep feeling, that goes like this:
“You should be Grateful you aren’t dying. Just think of the people who are worse off than you.”
To this I say, acknowledging the emotions I am processing is not the same as whining. Nor am I hoping to manipulate the feelings of others, or discount the suffering of those with a more grim diagnosis. I am acknowledging that I feel both overwhelmingly grateful, and happy and fearful and sad, and just a bit angry.
The funny thing about emotions is that we usually feel more than one thing at a time. While our society sometimes wants to simplify everything down to one thing at once. Reality is more complex than that. Feeling sad about my lymph nodes does not diminish feeling grateful and happy about the pCR, or okay about the loss of my breast. It seems to me that there is an unspoken rule in our society that says you can only have certain emotions at certain times, and that there is only so much emotional energy to go around. A faulty logic similar to berating a child who is full with “Finish your plate, there are children starving in Africa” is at play here. Eating or not eating that plate of food will not feed children on the other side of the world. Just as feeling or not feeling a given emotion will not change the circumstances for someone else. Really there is infinite emotional energy available, and we likely feel several things simultaneously at any given time.
Much can be accomplished to ease suffering by eliminating SHOULD from the emotional dialog. The reality is that as social beings our emotional state is influenced by the emotions of others. Sometimes this is difficult, other times it is a blessing. What I know is that when we try to follow the “should” rules, everyone feels worse. The “should” rule doesn’t reduce suffering, anymore than finishing my plate at dinner will feed others on the far side of the world. I believe that when I can be true to how I am really feeling, and be open with the people close to me, I can give others the opportunity to be more authentic, which helps us to connect more deeply, and makes everyone feel better. When I am in that shaming place of should there is no connection, or actions to help others.
So, right now I am feeling sadness around the loss of lymph nodes, and the accompanying effects on my right arm. Coming to terms with that is proving to be the most challenging part of my recovery. Right now, while still in the early stage of surgical recovery, the various pains, areas of numbness, and reduced range of motion of my arm are almost all associated with the axillary lymph node dissection. My chest feels, and really looks, fine – but the removal of lymph nodes, and the unavoidable damage to nerves, creates a set of consequences that changes my relationship with my right arm and how I will use it for the rest of my life. I am not suffering physically, the physical pain is manageable with Advil, it is the emotions of sadness and fear of future complications that I need to manage – and there are no pills to take for those things.
One feared future complication is Lymphedema, an accumulation of lymph fluids which can result from compromised lymph channels. The swelling can impact movement, strength, and makes for very high stakes of infection from something small like a tiny cut, burn or bug bite. The list of changes includes: not lifting anything heavier than 15 pounds on my right side, never using a sauna again, wearing a compression sleeve for the next four weeks, or perhaps year, and then anytime I might be at risk for triggering the lymphedema, like riding an airplane or getting sweaty from working in the yard on a warm day. These are changes that will impact my livelihood, and several things I passionately enjoy, such as beekeeping. Dealing with my fear of lymphedema is no small thing.
I am on the mend, adjusting to being modified, and I fully expect that the mix of emotions I am feeling right now will shift towards my usual set point of enthusiasm with general optimism. Despite the changes to my body, my infinite being self is steady, even while I am still transforming spiritually, emotionally and physically in many ways. I hope that some of what I learn through all this will serve to help others, and if expressing the full extent of my various feelings will ease the suffering of someone else, all the better.
It might be interesting to note that at the time I wrote this piece I felt too uncomfortable to post it. I was still struggling with being okay with all the different emotions I was experiencing. Looking at it now it seems a little like a self pep-talk to help me change my occurrences. And I can see I was actually feeling more than “a bit angry.” Most of 2015 was spent continuing to do this emotional work.
Two years out from writing these words I am fully healed physically from surgery. Which I measure by the fact I can sleep on my stomach again, though if I sleep on my right side, my preferred side pre-cancering, I wake up. The removal of some of my pectoral muscle impacts my body mechanics some, mostly manifesting as a really tight trapezius muscle.
My lymph node removal does indeed continue to impact my life – I am still wearing a compression sleeve daily to support my lymph. I don’t sleep in the sleeve. Most of my swelling has been minor. It has tended to be worse in my torso and armpit, rather than my arm. If I don’t wear the sleeve, my arm gets achy if I do pretty much anything. I wear a modified bra when I go to town, and need to be mindful of the type of band they have, too tight = swelling. Ironically the prosthetic I tried out came with a bra with too tight a chest band.
I can’t wear any even slightly heavy shoulder bags now. (The residual impact of a childhood collarbone fracture on my left side prevents me from switching shoulders.) It is encouraging me to go against the current cultural trend to be prepared for anything with a GO bag, too heavy. I’ve also let go of any ideas of backpacking again.
Finding a brand of compression sleeves that fit my particular arm better has decreased incidents of swelling. Plus the brand LympheDivas sleeves come in a stunning variety of colors and patterns, which make them actually sorta fun to wear. I purchase mine here, on a site with excellent customer service.
I continue to explore emotions of all kinds, all mixed together. Mostly I’m okay with that.