Hi! I'm Cadence

I was diagnosed with Chronic Myeloid Leukemia on February 12, 2018. This is my story.

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Day Zero (Transplant Day)

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Day -26

Appointments: CT, 2DEcho, Dental Exam

Today started out a bit hard but ended off wonderfully.

Last night I spent the first night in the ‘temporary home’ my husband and I had to rent in Toronto, since we live too far away to be within a safe distance if something goes wrong during my recovery from the transplant once I’m released. It can be touch and go for weeks to sometimes many months, and we were told to prepare for a recovery that could come with many setbacks, and which typically didn’t follow a linear scale. 

When I’m anxious or have a lot going on in my life, instead of being exhausted I tend to have an abundance of energy that isn’t always enjoyable. This definitely strays into mania at times. Last night I didn’t fall asleep until around 4am, and was up at 7:45 for a day full of appointments. We are about to start all the pre-assessment tests to clear me for the transplant, and they do a great job of putting a lot on one day, but it ends up being a long day.  

Thanks to the extreme generosity of so many people I was able to rent a place designed for medical outpatient stays with furniture, laundry and even cleaning that is about a 5 minute walk from Princess Margaret. This meant I could hit snooze at least once and still make it on time to my 8:30 appointment, so I do. Thank you everyone, that snooze was for you 😉

It also means that the day feels nicer when in between my appointments I can go back to somewhere safe and warm that’s so close. Thank you so much for making this happen, I cannot express how grateful I am to not be carrying to stress of trying to figure out how we would have paid for a space like this in Toronto for the time we were required to without the help of everyone that contributed in various was to support my transplant and recovery. 

When I finally drag myself out of bed, I throw on some clothes and stumble towards the hospital. The walk is nice and it wakes me up a little.  My first test of the day is a CT scan of my chest. The wait is short, and the test is short as well. They slide you into a little donut, on a bed, and something spins around you rather loudly while someone tells you to breathe in and out.

In no time we are finished, and I’m walking back to the condo. I have about an hour and a half to unwind before I walk back to the hospital for my dental appointment. 

Prior to transplant you need to meet with a dentist at the hospital who decides if any teeth need to be fixed or removed to ensure there is limited risk of oral infections. I was dreading this appointment because I have terrible teeth after many years in my youth of struggling with bulimia. Over the years I had slowly worked away at band-aiding the issues but never had quite enough money to undo the full damage I had done. I imagined him needing to rip all my teeth out when my transplant coordinator first told me about the dental appointment. 

When I first arrive for my appointment, they make you read and acknowledge a waiver that states that if you don’t have insurance you will pay for all the dental work you receive, as required by your dentist prior to transplant. It’s mostly not covered by OHIP, but if you need it, you need it. If you can’t afford it they can work out payment plans and deferred payments until you can afford it. Yikes, I laughed to myself nervously. 

A technician took my mouth x-rays and asked me some questions. Then, the dentist came in and reviewed my x-rays and asked for few more specific ones to get a better look. After reviewing those, we talked about my teeth and if I understood that some of them might need to go. He was really nice and understood that I had huge anxiety about my teeth. He tapped on a few of my teeth and we talked about some areas that were obvious issues. Then he froze a q-.tip with nitrous and touched my teeth with it to see how sensitive some of them were. It was like torture. It would have made an excellent Sensodyne commercial. 

We ended up settling on removing one tooth for now that presents a possibility for infection and doing some repair work on a few others. This would need to be done right away so the tooth site can heal. He scheduled it Monday, at the same time as another pre-transplant appointment, and told me to just come when I was done that appointment and we would try to fit it in between that, and my bone marrow biopsy in the afternoon. Perfect timing.

He explained that I would take an antibiotic Monday morning to help fight any chance of infection, since my immune system is low, and that I will have my blood checked in the morning on Monday as well to check my platelets as they have been trending downwards consistently for the last few months and were hovering around 50×109/L on Feb 20. If they were much lower than that we would need to talk about doing a platelet transfusion first to boost my counts before the extraction. It all just seemed so complicated.  

After the dentist I walked back to the condo and had a little bit of lunch, then walked back to the hospital, but this time Toronto General across the street for a 2D Echo. I had never had one of these before and it’s a strange experience, especially as a woman.

While you do get to wear a gown, there is essentially no point. You don’t even get to do it up or have your arms through the sleeves. It’s like an ultrasound of your heart from many angles, and therefore ends up being a lot of paddle on/and/or around your left breast. You lay on your left-hand side on a table and the technician sits beside you in a stool at the ultrasound machine, and they put their arm around you, like a strange, tight, side hug.

After a while I found it strangely comforting, that it felt like this stranger, who was listening to and looking at my heart, was kind of hugging me.  Wet paddle in hand, as he uncomfortable dug it into my helplessly sideways uncovered breast, looking for the best images of my heart, I appreciated the unintentional hug from this guy. I appreciates all of the jobs that so many people in the medical field do that integrate together to keep us all working and well.

At one point I got to twist and see my heart beating and it was so cool. I also really enjoyed getting to hear the machines swooshing interpretation of its beating.  It took about half an hour to get all the images, and then I headed back to the condo again to grab my bags and leave for the weekend to head to a Pink Pearl retreat for women under 40 with cancer. Two of the girls I met at CML Network group are going and I’m super excited. 

Traffic was a grind, but once I arrived it was honestly like breath of fresh air sharing dinner with 30-40 other young women just like me who are trying to cope the best they can with the ongoing changes that cancer presents to your life. I instantly felt like I could connect with all of these people without any effort.

We talked about our diagnoses, our experiences, our hopes, dreams, jobs, hubbies, kids, and dreams of having kids that had been lost forever. I’ve never done a retreat, or hung out with lots of young people, and especially women with cancer. I felt at home. I laughed hysterically with my room-mate at the oil paintings in our room, and I just felt joy inside. Today was hard, but it was great. Life is great. I can’t wait to do it all over again in 26 days

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