Reinvention

When Pain Brings Perspective

It’s been several months since I felt an urge to write about breast cancer. I’ve been trying to slip back into my old life, which is very odd. It’s very odd to find that I don’t want the old life back.

Being ill puts details into relief, and that means you see what is missing in your life, too. I invested too much of myself in my job. I think I sort of dumped everything there, and screwed into it as a way to feel secure, all those years when I was in an unhappy relationship, when I felt inadequate as a partner, as a parent.

I feel that I have burrowed down and now need to pull myself out without breaking. This summer I came close.

I remember when the nurse told me, “Don’t ever say ‘just pills’.” This was when I told her that I was looking forward to being finished with chemo and radiation and then just taking pills. The pills come with side-effects. Headaches, joint pain, incontinence, brain fog, hot flashes. The oncologist had me switch to another type (women responded differently to different pills, sometimes even just different manufacturers). The problem was, he didn’t check for contraindications. The new pills were steroids. Within a week, I was in a bipolar mixed state, with obsessive thoughts so difficult that I was becoming a danger to myself. One phone call and I was off the pills immediately, and in the oncologist’s office the next morning. I was told to take a week off of medication.

What happened to me during my steroid-frenzy may have been the most difficult part of this entire year. I have learned to check for contraindications and steroids myself. But I also learned a lot about forgiveness and living with regrets, with mistakes, and with self-compassion.

I’m back on the original pills. There aren’t many to choose from. But there is a brand new medication for hot flashes that isn’t hormone based, and it has been amazing. But the joint pain persists. I am looking at 7 years of not being able to stand up and walk across a room without halting and limping the first 10 steps. It’s very strange since I am probably fitter than I have been in the last 6 years or so. Pilates several times a week, swimming, running, hiking, yoga. I have to admit that it’s difficult to stay motivated.

Lymphedema. I have had lymphedema in my remaining breast tissue and along my torso since the beginning of the year. I felt the same heaviness in my left arm. The chording reaching all the way to my wrist. My physiotherapist said that I was feeling nerve damage, but still, I felt the swelling. I bought some designer, light compression sleeves for those days when my forearm feels or looks odd, or when I exercise. I also bought a cut-proof glove to wear when hiking. I like the perk that I can grab a thorn bush for balance on a tricky trail without worrying about getting hurt. (Injury to the arm on the side where there are no lymph nodes can cause lymphedema.)

My first 3 days back to work this year was a team-building trip that included a 4-6 hour hike. I made it in 5 1/2. No one has asked me since if I was really ready to be back at work.

Now that I am back, I am trying to figure out who I am now. What I want. This body, this mind. I have no idea what my goals are anymore.

I was talking to a former student yesterday about feeling like our old selves. He is experiencing universal alopecia. Another student was working at the cafe where we were drinking coffee and commented on how she didn’t recognize me because my hair was short. I explained that I was going to keep it short because the thought of waiting 6 years for my hair to get to its previous length (my look) to feel like my “old self” was absurd to me.

My chemo curls are gone. So now I get to reinvent myself.