For the past year, my world had been full of uncertainties and anxiety about what my future will look like. Whether or not I will ever be back to “normal” – pre-Cushing’s disease. Those of you that have been following my journey know that I had two failed surgeries and lived through experiences that I never thought would happen to me. There were times where I felt so defeated that I was just glad to have done almost everything that I wanted to do in this life and just call it a day. It has taken time and patience to pull myself together and try to make the best of it all because I know how things could always be worse and that I am fortunate enough that it is not. Last year, in between dealing with my health issues and recovery, I worked on my portfolio for art school. I applied to my “dream art school” – one of the top art universities in Canada and got my acceptance letter just before everyone is advised to stay home due to a pandemic that no one in our generation or the one before us have experienced.
My consult for bilateral adrenalectomy with the endocrine surgeon is scheduled next week but they have just announced that all surgeries that are non-urgent are suspended in preparation for what is to come. I had plan to have surgery this summer so that I can go to school in the fall which doesn’t look like it will happen now. I am still grieving over this. For me, given so much that have happened this past year, was another unexpected disappointment – a series of unfortunate events. It seems that the universe would give me a little bit of hope and then take it away shortly after.
“You know what kind of plan never fails? No plan. No plan at all. You know why? Because life cannot be planned.” – Kim Ki-taek, the movie Parasite.
While it is hard to accept that many plans fail. It is much harder to think that I may not be given the opportunity to come up with a plan if I am dead.
Close to 500 people died in Italy today, it was very much the same in Wuhan in China just a few weeks ago. There were unbelievable videos posted showing crematories simply could not keep up with the amount of dead bodies. Some people will choose to shield themselves from such terrible news/facts and that is rightfully their choice. And some people will choose to be completely ignorant and continue about their lives with minor inconveniences for now. One thing is for sure though, the whole world will suffer economically for years to come which is inevitable unless you are the top 1%. I learned a great deal this past year about so many things that it would take a long while to write about. But for now, despite not being able to go to my dream school and not moving forward with curing my disease I keep telling myself:
Buona salute e la vera ricchezza
“Good health is true wealth”
and another Italian proverb: “The person who enjoys good health is rich, even if he doesn’t know it”
Because I am grateful to have another day tomorrow when I wake up with a roof over my head and food in the fridge. Thanks to my incredible mother – even though her own small food business is barely sustainable and going to be out of business soon (despite my resistive plead) she continues to hull food over to my house to drop off at my doorstep so that I don’t have to go to the grocery store. My sympathies for all those lives lost due to this virus and the many more that will come in the days ahead. There is another Italian proverb: “As long as there’s life, there is hope”. Let’s take care of each other and do everything that we can to save lives.
My family was given a number to track my status while I was in surgery. In the OR family waiting area, there is a screen, much like the one you would see at the airport with the tracking number and where the patient is. The surgeon scribbled down Josh’s cell phone number on a scrap piece of paper before wheeling me in for surgery. Josh would wait for his call when the surgery is complete. My mom said she had never been so worried in her life, her heart was pounding the entire time. Josh, my brother and my dad passed the time by snacking on junk food from the vending machine and the “Nutman”. The three of them argued over everything from climate change, the carbon tax, to China’s surveillance of the world. The surgeon called Josh 2 hours later and reported the surgery went well. During the surgery, they found another small nodule that was not visible on the MRI and it was successfully removed. My mom said she saw a surgeon out to talk with another family that was waiting and it did not look like it was good news. She was so relieved by the phone call that surgery was successful and they could go see me now.
The part where you enter the OR and within 5 minutes you are in a coma is great. It’s like you leave the world for a little while, you don’t have to worry about anything, you just have to believe that you are in capable hands where you would wake up as they promised (well actually they don’t promise anything, you sign a consent acknowledging that you may never wake up…) Gotta have a positive attitude right?
When I woke up, I literally thought I was going to die. I had this unbelievable headache, nausea, and eventually vomiting blood. The worst of it all was that I really had to pee and they didn’t put a catheter in the OR. The nurse I had was efficient and amazing, I was promptly taken care of (I asked to have a catheter put in) and she quickly gave me something for pain and nausea. I went from feeling like death to near death in about an hour. She did all this while my concerned family was buzzing around. I ended up spending a week on that unit because of complications associated with my Cushing’s disease. I had diabetes insipidus, I was so thirsty and everything I drank went right through me. I had no strength to get up to go to the bathroom every 15 minutes. I thought the Foley catheter was the greatest invention of all time. I lied in bed, drank, and waited for my bladder to contract. I kept meticulous record of my intake and output to pass the time because I couldn’t sleep despite how exhausted I was. When I was feeling a little bit better with a bit of energy, I was carrying my catheter bag around with me like a purse to walk laps around the unit – I thought about asking for a walker so I can hang the bag there and do my laps…. If you ever worked on a surgical unit, you would know that they call patients like me a “Walkie Talkie”. Aside from monitoring and managing my diabetes insipidus, I was improving little bits at a time and I was hopeful for a speedy recovery.
I braved every needle poke and it did not even faze me anymore when the vampires make their rounds (the only problem was that they ran out of good veins to poke because they were so bruised – I told them to just start drawing from the hand). I lost count after 30 pokes. The patient next to me had a malignant brain tumour (I think she was only in her late 40’s). I felt very fortunate that I had a tumor that is most likely benign and that surgery would yield a 70 to 80 percent cure rate of Cushing’s Disease. After spending a full week in the hospital, I was eager and felt ready to go home.
#writing #memoir #nonfiction #recovery #surgery