I Am Eli… Hear Me Roar!

I didn’t write for the last few days because my roar sounded more like a whimper than a ferocious call of dominance and savagery. Occasionally the whimper turned into a lonely howl, like that of a young animal waiting for someone to come save it from danger. I felt lost and alone, and really unsure of my ability to go through all this again. In the shower, and in the middle of the night, and anytime I was alone, I just kept thinking about the hopelessness of my situation. The truth is, nothing and no one can save you from cancer. If it is as aggressive and intent on leaving its claws in someone, as mine is, it really just seems like a matter of time. How can someone miraculously beat cancer twice and then turn around only to be diagnosed a third time? My thoughts since then have been filled with the panic that always gripped me at the plate when I used to play softball. The count is three balls and two strikes.  It’s do or die time.  I square up to the pitcher and take a mighty swing. Instead of making contact, the ball zooms past me into the catcher’s mitt and the umpire calls, “Strike Three- You’re Out!”

The day after Jon and I received the initial diagnosis from Dr. M we visited the radiologist who looked at my MRI scans and gave us a much more detailed report, which was unfortunately worse than the information we had gotten the day before. To be fair, Majlis had not seen the scans and was just reading us results from the lab technicians who were looking at my brain on a small computer screen. Instead of only having one 2 cm lesion and another that was too small to even measure, the radiologist told us that I actually had EIGHT new lesions in the brain that needed radiating. There is the larger one, the one pressing on my spine and making me dizzy and nauseous, as well as 7 other lesions (each about 6 mm). If I had five or less lesions, they could proceed with a localized treatment with less harmful long term implications. However, since I apparently have eight lesions to get rid of, the radiologist said that I cannot use the gamma ray treatment because it would be too toxic to my brain cells, they would be exposed to too much radiation. “Wow, I’m really screwed,” I thought to myself. “How is this so much worse than the information we were given yesterday?” “Is this the beginning of the end?” I tried to make eye contact with Jon, but it was too difficult.

As you can imagine, we were both completely distraught by the bad news but tried to deal with it as best we could. “At least I don’t have to get a new Freddy Krueger mask made because they still should mine from before,” I joked. But, sadly, when I asked, they told me they threw the old mask out, so I had to wait for an hour to get another one made. As the lab technicians stretched a hot piece of plastic across my facial features to cool into place, silent tears fell from my eyes and formed little rivers on my cheeks. The mask definitely makes me feel claustrophobic and I’m glad I cannot see myself wearing it because I would probably freak out. I know it is made tight like that so they don’t accidentally radiate something that they aren’t supposed to, but it makes me feel like a freak show. The mask is so tight this time that I cannot open my eyes and my forehead and nose are covered in checkerboard mesh marks after just five minutes of having it buckled on. It is not fun. I left the appointment completely dejected and whimpered the whole way home.

One of the most difficult aspects for me mentally has been untethering myself again from the life I had worked so hard to reenter. Due to my dizziness I no longer have the energy to teach anymore or be at work. I can’t drive myself places safely, run errands, or walk the dogs by myself.  I can’t even enjoy a simple glass of wine.  Participating in a soccer match or doing anything athletic at all… forget about it. And so I am left, flapping in the breeze, desperately hanging on to the Eli I remember, but wondering what is left to tie me to her. Sometimes it seems like it would be easier to just let go and untether myself altogether. But of course that’s not really the path we’ve been designed for.

As soon as the news of my diagnosis broke, I received many emails from well-wishers, shocked and horrified that the cancer had returned again. The emails didn’t say much other than people wanted to show their support and wished they could take away my pain. Don’t worry- there isn’t anything else to say and do when tragedy strikes a third time, so I am grateful for the messages.   Initially, though, I wasn’t interested in what people had to say because I was having a hard enough time getting out of bed and continuing on with life.  I kept my phone charged in my room and didn’t look at it as the words came pouring in. It was just too much. However, Jon convinced me that the best thing to do would be to have everyone over in a show of support and strength, so in the spirit of the Timmtingers, we held a “Celebration of Bad News” gathering on Saturday night. We laughed and ate and tried to be as festive as possible, because honestly- what else is there to do? Although I barely had enough energy to dress myself and sit on the couch to receive hugs, the party was very therapeutic for me. I am constantly moved by the amount of support that I receive from friends, the community, and simple acquaintances.

Throughout the party I continued to grow in strength.  Friends of mine have made pink Team Eli bracelets similar to the yellow Livestrong ones to sell at school.   The proceeds of the sales are going to METAvivor, an organization I support that sponsors late stage (metastatic) cancer research. If you’re so inclined, you can donate at the top of my blog page or by clicking on this link: http://www.metavivor.org/. I will bring bracelets home in June for anyone who wants them, so put your orders in now. A huge shout out goes to the Swiryn/Galbraith clan for getting that initiative started. Initially they made three hundred bracelets and sold out of them within a day. I am in awe and deeply humbled.   

I recently read a quote on a breast cancer website I follow. It said, “We never know how we are going to die, but we can choose how to live.” So, I’ve decided that as long as I’m able to, I will not think about dying of cancer. Instead I choose to travel, I choose to host parties, I choose to cook, I choose to write, I choose to laugh when the moment arises. In short, I choose to be Eli. I know, at times, my roar will falter, but I know that when I can’t do it alone, Team Eli will be behind me, gnashing their teeth and baring their claws. So, here I go. I’m up on my hind legs bellowing with all my might: “I am Eli- hear me roar!!”