As you may already know, I have become involved in an art project initiated by You, Me, and the Big C to repurpose people's used radiotherapy masks as pieces of art based on their own unique experiences of cancer treatment. [EDIT - 7/11/18: Now that this piece is finished, you can read more about it's progress in this blog post]
For more information on how, why, and who, see my previous blog post.
As I continue work on the mask, I thought I should share the story behind the mask I have been given. Just a heads-up: it's not the easiest of reads and speaks of both physical and mental hardships.
Below is Lisa Reed's story:
"I live in the moment, the now, the present, the day. I have been battling cancer since 2007. Squamous Cell Carcinoma to be exact. A very aggressive form of cancer that started in my left tonsil. It then moved to my tongue, where I lost a portion of it in 2011. I fared surprisingly well, when losing the small portion of my tongue, and it merely put a small dent in my lifestyle.
By 2012, however, it had invaded the base of my tongue in which it was necessary to remove two-thirds of my tongue. I underwent a 12-hour surgery to rebuild my tongue in what is called a Left Radial Forearm Free Flap. Basically, my tongue was reconstructed, using the muscle from my forearm. Science has shown that our bodies respond best when using our own parts. We are our own salvage yards. As you might imagine, I have a significant speech impediment as my arm is learning how to be a tongue.
I had initially gone through a high dose of radiation treatment in 2007 when I was first diagnosed with cancer, having the usual seven-week protocol. This time, however, I was prescribed seven weeks of radiation along with four high dose chemotherapy sessions, which began at 7 a.m. and last until 7 p.m. A port and feeding tube were surgically inserted for both treatment and nourishment. I decided that the whole time was I was going to be having my treatment that I would wear my Wonder Woman T-shirt, to draw strength to get me through the days.
Cancer truly is a full-time job. Radiation treatments are daily Monday through Friday and on my chemotherapy days, I find myself packing a bag as if I were going on a trip, breaking only to run upstairs to undergo my scheduled radiation treatment for that day. I spent many days in the Infusion Centre for prescribed fluid infusions as the chemotherapy was making me severely dehydrated and depleting me of vital minerals and vitamins.
Grocery shopping became a heartbreaking chore but necessary to feed the rest of the family. I bought Boost and Ensure for my feeding tube. Sadly, I started to dread the grocery store a place I used to love to go to create beautiful meals for my family and friends. You see I come from a family of amazing cooks, big “foodies” and I, too, loved to cook, bake and entertain friends and family often. I would prepare a meal for my family and then, literally, have to leave the room. I could not bear to watch them eat something I could not. Oh, and the smell of delicious food would put me in tears and eventually make me mad. So mad that no one dared to tell me how good it was. I made everyone around me uncomfortable.
People would say, “Have you tried this or tried that?” These were very hard questions to even try to answer. Meatloaf dinner does not taste good in the blender! You see the base of your tongue is the muscle that pushes your food down as you swallow. Losing that meant I was working strictly on gravity to swallow. My food had to be in a more liquid state or it would just sit there in my mouth. I was becoming depressed.
Depression is death in recovery. It was at this point, I realised it was up to me to make something happen, so I got busy. I researched nutrition and scoured bookshelves for books focusing strictly on soups. Many recipes I had to reinvent to make them possible for me to eat. I learned it was impossible for me to swallow the skin on corn kernels. Who on earth ever thought of that? So I had to run corn through the blender, then a food mill to be able to eat my squash and corn chowder soup. Totally worth the extra effort in the end. Plus this was a step I could skip when feeding others. I was determined to eat healthy DELICIOUS food I could prepare for myself and others.
My hard work and determination paid off in the end. I was sustaining myself and my medical team finally agreed to remove my feeding tube — almost six months earlier than expected. Besides the dreaded cancer diagnosis, breaking up with food had been one of the hardest things I ever had to do.
My life seemed to become, once again, recognisable to me. I was enjoying my passion for cooking and eating delicious meals. I finally worked myself up to more solid foods and basically tried to eat anything I could get my hands on. I have settled down some since then.
In September of 2016, I had a bit of a set back where my jawbone had started to die due to all the radiation treatment. I had to have my lower left mandible removed due to the necrotic bone. A mandibulectomy with a fibular free flap they call it. In short, they rebuilt my jaw from the fibula of my right leg. I was down, but not out.
Fortunately, for me this time, my feeding tube was placed in my nose. Through sheer will and determination, I was able to leave the hospital five days early and had the feeding tube out in two short weeks. I had to beg them, mind you, with the promise I would return if I had any problems.
I have now become sort of the office mascot. They have asked me to reach out to other patients who are struggling and need some creative inspiration. A job I do not mind. Cancer requires thinking outside the box.
I tell my story because I was only given 5 years to live, . On December 21st 2017, I was given the news I was told I would never hear. “You are in remission.”
I am a fighter.
I am a warrior.
I am Lisa Reed."