Each moment is bittersweet

PHOTO: A birthday is a reminder of my cancer-versary

PHOTO: A birthday is a reminder of my cancer-versary

It has been almost three years since I experienced the first significant symptom that I had brain cancer.

It was one week after my 29th birthday that I lost consciousness at work, suffered a grand mal seizure, convulsed uncontrollably for five minutes, then peed my pants in front of the boss. I had no history of epilepsy and was 29 years old.

If only one in three adults diagnosed today with a malignant brain tumor will be alive five years from now... then I am more than half way through the waiting period.

I stopped Temodar three months ago and I think I am feeling normal again. Sometimes I wonder if cancer aged me (I like going to sleep early, even on weekends), but then again I could be feeling this way because I am getting older.

I started the process of getting a huge, cancer-inspired tattoo last weekend. It is going to take two months to be done (I will post pictures when it is complete). Some of my older friends wonder why I am still getting tattoos at my age and I like to remind them that:

  1. I am not old and

  2. If there was a possibility you could die sooner than all the people you know, wouldn't you live your life to the fullest (and not worry about having tattoos when you are old)?

Brett and I have fallen into a routine where we come home from work, make dinner and then watch two episodes of Star Trek on DVD before bed. Sometimes I wonder if we are wasting time by watching TV and being less active, but there is something comforting about being curled up next to Brett that I find very satisfying. We don't just sit next to each other--our arms and legs are wrapped around one another like we are one person. We don't want to be apart.

I asked him the other day if he feels like I do; we sit with each other like that because, in the back of our minds, we can't get enough of each other.

“Are you ever afraid that one day I will be dead and you wish you cuddled me more?”

His answer is yes.

We feel the same way. We constantly want to be together. Maybe it is unhealthy to spend so much time together--if I didn't have cancer I think we'd spend more time with other people, exploring more hobbies. But we are both scared that there isn't enough time.

This fear doesn't stop us from living our lives. But if we have the choice to be alone reading a book or be in the same room reading the book, we read in the same room on the same couch with our feet touching.

Brett still takes care of me to almost the same level as he did after brain surgery. He does all the cooking, he refuses help, and maybe this is just the way he'd be normally as a married partner. Or maybe he still "babies" me because he wants my life to be worry-free. I tell him I want him to have a break too, but he truly gets comfort about of taking care of me.

Brett isn't as outgoing as I am so staying home is natural for him. But I have friends who want to hang out with me and they roll their eyes when I mention Brett coming along. They don't realize how precious each moment is to us. It's not like, "Oh, now that we are married no one else matters." It's just that each moment is bittersweet.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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Brain cancer and organ donation do not mix