I understand that life in general comes with unknowns and it’s always an unknown that you’ll get an illness prior to. But you can’t live your life thinking what if I get sick someday; though, PSA, it’s a good idea to be prepared with health insurance in case you do. That said, when you already have an illness and your staring down the barrel of unknowns, it is the scariest feeling in the world.
My beautiful friend, a strong artist, deals with unfair illness unknowns with beauty, art and love. #cancersucks
I have three good friends dealing with this in their everyday lives. Huge-hearted Iris, artist of my portrait, would retreat to the comforts of her home with only her closest loved ones for the weeks before a scan to show if her breast cancer was still at bay or had come back. Spunky Nellie’s monthly scans are the only way she knows if her lung cancer is still showing no sign of disease or if it has come back. Straight shooter Shyreeta has been through the ringer with month after month of doctor visits, pain and inconclusive tests, with still no official diagnosis. I’ve seen them and watched them and wished great health and happiness for them. I’ve seen their faces contort with pain as not knowing is terrifying, especially when it feels like life is on the line.
Unknown Empathy
With my cancer, I felt lucky on the actual cancer side. My tumor was caught small and early and I knew I’d live. Yes, I’ve been through the ringer with weird complications and side effects, but however unpleasant, they all had repairs. That was until I had to get genetic testing. I saw a revered oncologist back in January of 2016. We discussed my whole history and discussed my family background as well. Our dad had died of pancreatic cancer in 2003 which, in a word, Sucked! It’s a horrible disease, one that still turns my heart when I hear someone new has it. With breast cancer, most people think of a BRCA gene mutation, but I learned from her that there are others and that she was particularly worried for me about PALB2, which links pancreatic and breast cancer, raising the risk for both.
So, here I was, with something big looming and the fear of the unknown creeping in on me. I had to fill out a bunch of family history paperwork and submit that, which took a while, then the first available appointment was months away on July 31, 2017. That day was a bit surreal, having to do a physical exam then sit down with the genetic counselor whose thorough descriptions were fascinating and intimidating. After, I gave blood which was shipped off with the thought of results in 2-3 weeks.
Those 2-3 weeks were hard. I felt like, this is it. I’m going to learn that I’ll die of pancreatic cancer and that it could affect my siblings too. I was spiraling. I put on 10 pounds of cortisol stress weight and could focus on little else. I got the call that my results were in and an appointment was set for August 17th. In a happy nutshell, I’m not imminently going to die of pancreatic cancer! I was tested for 24 genes and their mutations and tested negative for 24 including all the pancreatic ones. Huzzah! Yes, if you’re paying attention, I did test positive for one but, where my mutation lies has not yet been classified, so back to my second sentence above, I can’t live my life thinking what if I get sick again someday. I am grateful to have had this experience as I have such a different level of empathy for my friends and what they bravely go through.
I so love this time of year. I love feeling thankful and grateful heading into Thanksgiving and how those feelings continue right on into my birthday in early January. This year, I’m feeling off the charts gratitude and optimism. Helping to maintain these feelings daily, is the cheesy fabulousness of holiday cheer in its many forms.
That triggered the music and, boy, I’ve got the music in me!!! I made my first pecan pie the next day (with a gluten free nut crust and brown rice syrup and maple agave filling) while enjoying carols, singing
(Plus, I did get to attend the Gainesville Making Strides walk and got to partake with survivor friends and doctors.)
I didn’t realize I was going to feel such an affinity for this month. Last year on October 1st, day one of Breast Cancer Awareness month, I was having my fourth surgery. I did participate later in the month in Gainesville’s American Cancer Society walk but I didn’t own the month per se. Perhaps I was too much in the thick of things. This year, coming out of my sixth surgery a few weeks ago, this month feels very important to me and with that comes highs and lows.
But I still had the afternoon when a local hospital was having their Pink It Up party to kick off the month. I had a t-shirt from last year’s walk. It was a little big and shapeless so I set out to make it my own. At first I was going to turn it into a tank top and found pretty neat instructions online on how to do so. As I laid it out to begin, I flipped it over to the back and right in the spot that would be squished and invisible from the tank making process was the word “SURVIVOR.” Along with the shirt last year, survivor’s received these Miss America-esque sashes that emblazoned the word. I loved wearing it at last year’s walk – it made me feel special while highlighting all the survivor’s making it easy for us to meet and greet each other along the route. I had to think of some other way to adjust the t-shirt and voila. Not necessarily good or bad but I liked it. 🙂
I appreciated that I could see their effort: A pink Christmas tree, pink dye added to the fountains outside, a pink chocolate fountain that admittedly looked gross and I wasn’t about to taste it but I give them props for trying, many vendors, and these furry friends. There were people running around in pink, some from head to toe. I thought, hey, my people… maybe? I asked a people if they were patients or survivors, most all said no. They were hospital helpers or volunteers. I actually only met four or five patient / survivors that day out of 200+ people. Seemed wrong. The marketing exec in me kept thinking about how I would have changed up the event starting with having an agenda with a Patient / Survivor Meet and Greet / pink lemonade toast during it.
Meetings are monthly and, my goodness, I have learned so much about cancer, different treatments, and the amazing strength of all the women I came into contact with. These groups are so important as woman with this common bond are always there for each other. We’re not on other people’s timelines to be well or get over it. We can be ourselves and draw on combined strength whether you’re 5 days into your journey or 5+ years after your journey. I had a tradition of eating at my favorite Italian place (Amelia’s!) the night before each surgery. I texted a group of ladies to say I was heading into town and might possibly make the monthly meeting, which my surgery day fell on. Another suggested meeting up the night before and suddenly, I got to have dinner at my go-to, pre-surgery spot with 7 other breast cancer patients / Survivors / Friends. It made the night magical. 🙂
Gather to be brought upstairs. The drill was the same but it was a different experience being on my own as I kept getting asked who was with me over and over by person after person with each giving a look of disbelief. My mom who has been at each surgery was home with our 6 cats and my friend, Amy, who has come to all previous surgeries did offer but her usual role, babysitting my nervous mother while I’m unconscious, wasn’t necessary. Every surgery, my mom would take a “glamour shot” of me pre-surgery, so I took one in her place. It was a little weird being alone as there is always that chance or thought that you won’t wake up and I realized how nice it was to say and hear, “I love you,” as I was going under.
I was doing okay but with a pretty sharp burning sensation from each boob. I looked down and saw, well, this! I had to take and overshare a picture – I felt like a poor man’s FemBot. I posted the pic on Facebook and later got many funny responses as well as suggestions to bedazzle them. Hmmm…
Hey there! Well, I’m nearing my next surgery, this coming Wednesday. This is hopefully my last. If that’s the case, wow, that would be nice. This really has seemed never ending and in some ways, for the last 16 months, been never ending. This will be my 6th surgery, 7th time under anesthesia, and countless time on heavy drugs.