Poetic License

Like most things in life, people want you to get over whatever it was that hurt you, and as soon as possible, because they don’t want to hear about it. It makes them uncomfortable. When my daughter died, there was an initial outpouring of support, but it dried up quickly. Some of the things I did in the wake of my daughter’s passing make me uncomfortable when thinking about them, but I was hit so hard by the grief that I couldn’t think rationally. With cancer, there is a different kind of grief — grief over the loss of the life you had before. (And honestly, I think that’s what all grief is. Your life has now changed profoundly, whether through illness or loss of someone you love.) Regardless of the stage or type of cancer, you’re left with a deep distrust of your body, because it knows how to grow cancer, and of the universe in general.

I mistakenly thought that the hard part was the treatment. Like most people, I wrote down and absorbed the details of my treatment so that I could begin a countdown. Unfortunately, that made it difficult to roll with the punches, sometimes. If treatment were postponed or changed, it messed with my timeline. It went from “I’ll be done in early September” to “Will I be done by Halloween?” I fretted over when the surgery would take place. That was, in part, because of insurance, too. I wanted to do it before the beginning of the year, because co-pays and co-insurance in 2020 had meant I had to dip into my retirement account to pay them all. I was at my out-of-pocket maximum before half the year was over, and I didn’t want to start that process all over again. (In the end, I got a better plan for 2021, so it wouldn’t have mattered so much.)

Always in a rush, always trying to get through 6 more chemo rounds or 5 more rounds of radiation. Reminds me so much of my daughter, who was always in a hurry for everything in life. I really thought that if I could get through it all, it would then just be a matter of healing and getting my strength back. I couldn’t wait to get back to the 2-mile walks with my dog or the hours-long game days with friends. I couldn’t wait to feel like driving again. I even got myself an “end-of-treatment” gift of a new car right after I had my port removed.

Silly girl.

About 6 weeks ago, the fatigue began to return. Then the pain on my right side. This is after I battled rashes and headaches and asthma for most of the spring and summer. That earlier stuff was just annoying, whereas the new stuff was painful. I’m used to pain because of spinal problems, but this pain was more frightening because with cancer, you’re always looking over your shoulder. Is it back? I thought. My son lives two states away, and I already have friends doing my yard work. How much more can I ask of people? What if I had to have chemo again, which made me so tired and nauseated that I often didn’t want to do anything and really could not drive much.

I put off going to the doctor, because part of me just didn’t want to know. But finally, the swelling was noticeable and very uncomfortable all day long. It hurt to lie in my bed, but I couldn’t keep my eyes open much past seven in the evening. I had started sleeping 11 hours. (Still am, pretty much, most nights unless I have a long afternoon nap.) But I made my 3-month appointment with my oncologist for next month. A fellow cancer survivor suggested that I also call my surgeon, so I did that, too. After her nurse spoke with me, she scheduled an appointment for the next morning.

My doctor thinks it’s lymphedema. I have been so careful about wearing my compression sleeve whenever my arm feels heavy or tingly (and of course, it’s on my dominant side!), but this is in my breast and chest. The heaviness and gravity has also caused costochondritis in my rib cage (which to my mind made me think cancer had spread to my bones). She thinks I might also have mastitis (an infection in the breast tissue that usually only affects nursing mothers). Cancer changes everything.

Because I told her that I don’t feel I can tolerate a mammogram right now due to the pain, she has ordered an MRI for next week, just to be sure that my “.001%” chance of cancer returning to my mangled boob hasn’t caught up with me. Hopefully that comes back okay. And I’ll be scheduling PT, in which the therapist will basically teach my tissue to find new avenues for the lymphatic fluid to drain (and will teach me how to do this on my own, as well). SO. MUCH. FUN. Oh, and I’ll probably get a new compression garment to wear over my chest. I don’t think this will improve my mood!

I was mistaken in thinking that cancer battles are fought in sprints, when the cancer is active. There’s a whole other ball of wax when you’re in remission. As my friend Jordan so wisely put it, “My life will never be the same.”

And I should know this, because I watched what happened to my father while he battled cancer for 7 years. He lost everything. I mean, everything! I’m fortunate that I didn’t have much to lose that wasn’t of monetary value. I’m on my own, so …

All of this was driven home this morning when I watched Val, the documentary of Val Kilmer’s amazing life that was put together by him and his son, Jack. Val, if you didn’t know, survived throat cancer a couple of years ago, but he lost his voice. He has one of those plastic tubes in his throat that lets him choose to either breath or swallow. He can plug the hole on the outside of his throat to speak, but it’s a mechanical-sounding voice. He’s weak and uses a scooter if he has to be out at an event or something. He falls asleep sitting up. He looks much older than his 61 years. I can relate to all of those things. Even if he had a voice, he wouldn’t have the energy to go back to his job as an actor. He lives in a duplex, where his daughter, Mercedes, lives next door. In this way, he has someone available just in case. He’s in remission. He survived, but cancer took a lot away from him. God bless him.

Today I’m going to try to put in an appearance at the local coffee shop where some friends are meeting for games and community. I want to go, but I still have to finish my laundry and call my sister and my son. Yes, just that little bit of life feels like a lot. Yesterday, I managed to go get a haircut. That was a big undertaking for me, because I also had to stop at the pharmacy for the medication for the mastitis and some drinks. By the time I got back into my car, I was shaking. I don’t like to admit this. I like to see myself as strong and independent. I like to think of myself as the conqueror of all obstacles.

But here I am, feeling so drained at 11:00 on a Sunday, and the day hasn’t really even started. I showered. I changed my bedsheets. And I’m exhausted.

This is a huge part of why I didn’t take on the roommate. She was starting to make demands of me (maybe she saw them as requests, but they felt like demands to my tired person). I simply can’t meet anyone’s demands, not even my own, most days. I was so angry with her when she asked if, after moving into one of the bedrooms, she might change her mind and take the other one. I told her she could if she would help me move the things out of the other spare room. She said, “I have back issues.”

Inside my own head, I raged at her. You have back issues? I wanted to shout. What the fuck do you think I have??

Instead I took a deep breath. It was the beginning of me saying no. I learned a long time ago that I alone am responsible for my own well-being. And it was becoming clear to me that she would have simply been a drain on me. No amount of money would have been worth that. I’m drained enough.

I’m going to see if I can get myself out of the house at least for an hour of social time. But I’ll forgive myself if I can’t, and hopefully my friends will be as gracious.

Namaste, Jude