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 Limbo 1-3

Tuesday night when we got home for Toronto, It felt like the sickness I woke up with was invading my entire body at a rapid pace. I couldn’t stop coughing and my face, all around my eyes and underneath felt like it was going to explode. It reminded me of a TKI headache (They’re the worst) but 100 times more painful.

I laid down on the couch in the living room and didn’t get back up. I could’t fall asleep, even though my body felt like it desperately needed the rest. My eyes felt like they were wiggling at warp speed and I had to give up watching the TV and mostly listen to it. By 5am when I still hadn’t fallen asleep, I knew something was wrong. I tried to toss and turn on the couch for a couple of hours but the nausea that had begun in my stomach was making it hard to lay still.

When I heard my husband was awake at around 8am, I told him I wasn’t feeling well and thought something was wrong. He helped me move into the bed in our room, but within a couple minutes of moving there I knew I was going to be sick.

Soon I was so sick it felt like my lungs and chest were going to explode, as I threw up for what felt like the hundredth time. I started drinking water just so I could have something to throw up because the retching was intolerable and was starting to produce blood. I was drowning in sweat but so cold I couldn’t stop shaking.

Bill was on an important training call for some software he had just invested in to help his sales team and I felt so guilty that after spending a few days in Toronto with me, here I was interrupting another one of his work days to take care of me. He’s been trying so hard to keep everything operating smoothly and I know it hasn’t been easy. So instead of bugging him, I called my mom from bed and told her to come over and call an ambulance. I knew it was time to accept defeat and delay the transplant.

We went to Lakeridge Oshawa and all I could think was ‘Please don’t let it be sepsis’. I’ve been living with a Low Neutrophil count for almost 10 months, where It’s been hovering between .5 and 1 the entire time. At my last check up it was at .7 and I knew I was at a greater risk for infections. Sepsis is a huge risk for immune suppressed patients like me and it can be a quick acting and extremely risky infection to have.

Since I’m a Leukemia patient they quickly put me in an isolated room, while they ran a ton of tests and X-rays to see what was going on. They gave me a gravol injection and some Zofran (Post chemo anit-nauseants) to try and control the vomiting, as the bleeding from retching was starting to get worse and I was quickly running out of energy to even sit upright to be sick anymore.

After a few hours when all of my tests came back clear including sepsis, we could finally breathe a sigh of relief. The medication had eventually stopped the vomiting and the doctor thought that perhaps the infection from my tooth extraction had destabilized my immune system enough to leave me vulnerable to a combo bacterial/viral infection. He said my white counts had jumped up for the first time in four months, and suddenly my Neutrophils were sitting at 1.5 which showed my body was definitely trying to fight off infection. Since I take drugs that suppress my blood counts, they don’t typically rise on their own without withholding the drug- rather they have been slowly declining since November. It is a promising sign that even at this stage of my disease that my body was working hard to try and heal me. He also said that my platelets had dropped to 38, from 51 in the last week, and that I would need to discuss with my CML Doctor how best to proceed with managing them.

They wanted to get me out of the hospital quickly to reduce the risk of further infection, so once they were able to rule out anything serious I got to go home with a bunch of Zofran to keep me feeling better. I spoke with my transplant coordinator who confirmed that my transplant would be delayed 2-4 weeks, and that they would assign me another date shortly, after conferring with my donor for their availability.

It was soul crushing at first. I bawled. I felt like I had finally come to a place where I was ready for this procedure. I was a week away from checking in and getting my hickman line. I was so close. I worried that my donor would be frustrated or back out; that I had inconvenienced them too much. I was worried my doctors would hate me or find me annoying. I felt like such a burden. Above all, I was frustrated that I had to resign my fertility for the speed of this procedure, and here we were delaying it. It made me mourn the loss of it all over, and I suddenly found myself clinging to the desperate hope that maybe they could save it, now that we had time, all over again. But I knew I was only kidding myself.

I was so sick for the next couple of days that I didn’t really leave my bed. I mostly rested and tried to let my body heal. I’m taking antibiotics to try and help me get better but they’re extremely strong and do a number on my stomach which makes it hard to eat. I wasn’t able to go to the Durham College CML Network/ Hearth Place fundraiser and I was so disappointed. I was grateful to my parents for going on my behalf and speaking for me. I’m hoping to still make it to the event this Sunday, but am still taking it an hour at a time right now.

Now that I’ve had a few days to reflect, I have a lot of feelings about the transplant being delayed and the crazy ways the universe works. I know this happened for a reason, and there are many things I need to do now before my next date. There was a clear reason I needed more time and I was blindly ignoring it. The universe gave me a huge wake up call. But that’s a story for another blog post….

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