Today is my third ‘Re-Birthday’. Three years ago today, a kind and incredibly selfless person gave part of themselves to me, so I could win my battle with cancer and have a chance at a second life.
To many of you I’m sure, three years seems like a long time, and it is. When I was first told I would need a transplant I imagined myself being back to work and living a normal life within a year, but that didn’t really happen. After two and a half years of complications I finally ended up trading in the ticking time bomb of cancer for another: Stage 4 chronic kidney disease. I’ve been told to prepare myself for the likelihood I will need dialysis or a kidney transplant in the next 5-10 years.
This uncertainty makes it challenging for me to plan ahead; to make decisions about where I want to be or what I want to be doing in 5-10 years. My life feels like a sand timer where time is slipping through my fingers faster than I can hold on to it and it leaves me with a sort of desperation I know my husband and friends don’t always understand, not matter how hard they try.
Bill often talks about the things we will do when he retires at 55, and I try to kindly remind him that I may not be a part of that picture; that I may not have that same luxury of time as he does. It’s not because I’m morbid or negative. I am simply realistic. I want to do those things now, before it’s too late. Until you’ve had time stolen from you so callously, it can be hard to shift the ‘one day’ mindset to truly live in the ‘now’.
Since my transplant I have often joked that the universe ‘speaks to me’ and sometimes loudly. I don’t always understand these messages or their purpose, but I feel driven towards these messages and feelings as though I am being guided by an unseen hand.
Buying a condo in Nashville was my first ‘Message from the universe.’ It seemed crazy at first to both of us, but last summer we started casually checking out properties for sale. A few weeks later a property arrived in Bill’s inbox. It was in an amazing location, and it was an unbelievable price. Even stranger- it was listed by a company called ‘Ashton Realty.’ (Our last name is Ashton and it felt like a sign!) We knew there had to be a catch, and there was- It didn’t qualify for a mortgage so we would have to buy it outright. With some assistance from my parents, we were able to make it work, so we put in an offer and before we knew it, we had bought our first place in Nashville.
In March, once Covid had calmed down a bit, we finally got to see it and start doing some much needed renovations. We mostly stayed in and ate take out as we were afraid of getting Covid in the states and being stuck down there unable to come home. Part way through the trip I started getting severe night sweats and was so tired I would sleep until noon every day and could barely drag myself through the day. It reminded me of the few weeks leading up to being diagnosed with cancer and I suddenly started to panic thinking it was back. I tried to push through the rest of the trip and when we went to get Covid tested to return home, we both tested negative, so I figured I was in the clear.
A couple days after we got back the fatigue seemed to be getting worse and I started to wonder if I had finally gotten covid. Rapid tests kept coming back negative day after day, but I kept feeling worse until finally almost a week after we got home, I tested positive for Covid and so did Bill. For the most part it was tolerable except for one day where I couldn’t keep any fluid down and had to get an IV at the hospital to keep up.
In the middle of it all, my Nana who I am very close with was rapidly declining and I was praying I would test negative quickly enough to see her before she passed. After 5 days I finally tested negative and was able to see her. I got to sit with her for her last couple days while she was still a bit aware. We read the bible, I sang her favourite hymns and we listened to music from her teenage years. On her last night, I sat up with her while she slept and around 5:30am and I went home to get some sleep myself. My dad stayed with her, and she passed in her sleep less than an hour after I left. She was in her 100th year and had lived an amazing life. Some of my happiest memories are of all the adventures we had together when I lived with her for nearly three years as her caretaker. She taught me far more than I taught her. Patience. Resilience. Unconditional Love. I was incredibly sad to see her go, but I know she will be at peace and so happy to see my Papa again.
The second time the universe spoke to me, it spoke with a warning.
Before my transplant I had smoked cannabis for over 10 years. The truth is, I was an addict. I’ve struggled with mental health issues for most of my life and cannabis became one of my coping mechanisms. It calms my mind, quiets my ‘Becky,’ and slows down the chaos in my brain to let me focus. When I was told I needed a transplant I had to agree to quit until my immune system was working again or I would risk getting aspergilis or another kind of fungal infection in my lungs that could be deadly.
I tried to quit, but the fear and overwhelming emotions leading up to my transplant terrified and paralyzed me. The truth is, I smoked right up until the day I checked in for my transplant. Quitting was one of the hardest things I’ve ever done. It was like letting go of a security blanket during some of the hardest moments of my life when I desperately needed something to numb the pain and grief I was experiencing.
I waited for more than a year after my transplant until my immune system was back to normal and I was off all my immunosupressants before I quietly started again. I didn’t tell my team because I was afraid of being scolded or judged. At the time I was experiencing an immense amount of depression and loss and had no idea how to get through each day.
Last November right before CCMA’s, a CT scan of my chest showed a group of nodules spread between both lungs, with one measuring 8mm. At the time my team said not to worry, I had a chest infection and we assumed they were connected. I was given antibiotics and had a repeat scan booked for the new year, but inside I was terrified. I could hear the universe screaming at me to quit. Telling me it was time. Time to give it up. But I still couldn’t.
In early March the repeat scan showed the nodules remained, and I finally admitted to my team I had been smoking cannabis again. My doctor freaked out and told me I was being incredibly stupid. That I had fought so hard for a second chance at life, and I was risking throwing it away over weed. He was right. I felt so ashamed. That was the second warning.
I spent the next few weeks trying to quit while I waited for an appointment with a respirologist. I kept telling myself things would be fine, but some days it felt like the universe was screaming at me to quit. It wasn’t that I didn’t want to, I did. I knew it was time. I just didn’t know how I was going to deal with my feelings or chronic pain without it.
The respirologist looked at my scans and felt the shape of the nodules was likely not cancerous but was definitely strange. He told me to quit smoking and we would do a repeat scan in a couple months to see if there were any changes and if not, we would biopsy the largest nodule. Because he didn’t seem overly worried, I let myself also not be overly worried.
By the end of March I had gotten my smoking down to a half a joint a day at night so I could sleep, and I was clinging on to my addiction for dear life, afraid to finally let go of the one thing that brought me comfort in my darkest hours. My one vice.
About five days after I got over covid, my lungs suddenly started to fill up with an immense amount of fluid. I was having trouble breathing and I couldn’t stop coughing. I had already made an appointment for last week to see my oncologist about a growth at the back of my mouth before we went back to Nashville as my family doctor was unsure of what it was and said it should be biopsied. When he listened to my lungs struggle for air, he sent me for an emergency CT. The results brought my world to a halt.
The test showed I was experiencing either a bacterial or pathogenic superinfection, or the beginning of something called bronchiolitis obliterans, which is a devastating chronic lung condition with no treatment and a median survival of two years. It is common in transplant patients and can be caused by cannabis use.
That was my last warning.
When I read the results, I was engulfed in shame. I had wasted my chance. So many people had cheered me on, had held me up during this experience and I had let everyone down by not letting go of my addiction. I felt stupid and guilt ridden. I sobbed in bed clinging to my husband, terrified. I had ignored the universe’s warnings twice and now it was too late. This was the end.
My doctor called shortly after the tests came back. He told me that because of the acute onset of symptoms they believed it was a superinfection- one infection superimposed upon another, making it difficult to treat either, but they couldn’t rule out the more severe condition. They would treat it with heavy antibiotics first before repeating the scans, and I would need to cancel my upcoming trip to Nashville until I stabilized.
I felt a small tinge of relief from this news, but I knew this was it. The last warning. It was time to quit, for good or I would pay the ultimate price.
My husband tried to distract us by booking an overnight stay in Niagara Falls this past weekend, which used to be our favorite place to escape to. We had a nice dinner out and enjoyed some fun reconnecting with each other. The next day one of my blood tests from my oncologist appointment came back positive for Epstein Barr Virus. I had contracted EBV a month after my transplant and because it can rapidly evolve into lymphoma in transplant patients, I went through a round of chemo then to stop it. Now, Covid and this other lung infection had weakened my immune system enough for it to reactivate. I was experiencing a triple superinfection.
This brings us to today. I am five days smoke free. The antibiotics seem to be helping a bit and while I wait for my next scan I am trying to hope for the best and I am trying not to spend all my time engulfed in my own shame. I know what I did was stupid. I know I probably let a lot of you down. Maybe some of you will feel differently about me after this and that’s OK. I deserve it. I took my second life for granted, something I promised I wouldn’t do. I won’t do it again.
All I know is, when the universe speaks to me next, I will listen the first time. I now see what not heeding it’s messages or warnings can lead to. I trust that it has my back if I let go and let it guide me. So I will. I hear you universe.