Friday, September 22, 2023

The Faces of Blood Cancer - CML

Today is World CML Awareness Day. The theme this year is putting a spot light on CML. I cannot think of a better way to help spread awareness than to share this next story. 

I am very happy to introduce you to the beautiful and talented Cadence Grace. Her story is remarkable and you can read more on her blog Love and Leukemia.

OH! and if you like country music I highly recommend downloading her solo song I'm Not for only $0.99. I'm listening to it right now! Proceeds go to support The Canadian CML Network.

What was/is your diagnosis?

I was diagnosed with Chronic Myeloid Leukemia (CML) in 2018.

How did you find out you were sick? What led to your diagnosis?

I found out I had cancer during a routine physical to prepare for a month-long trip to Nicaragua where I was planning to complete yoga teacher training. Regular bloodwork showed my whites were elevated way beyond what would be expected even with a severe infection and my doctor immediately suspected leukemia. I was referred to the local cancer center for a bone marrow biopsy to determine the type of leukemia and a couple weeks later it was confirmed to be stage 1 CML.

What were your first thoughts when diagnosed?

Until we knew exactly what was happening, I was pretty terrified. Definitely when you googled leukemia the information was pretty scary. It was also a huge shock. I hadn’t been to a doctor in years before this appointment and felt like I was at the peak of my physical health, but pretty quickly a lot of things came in to focus that all seemed to suddenly make sense. I had been extra exhausted lately but with a full time job and yoga training I had just shrugged it off as burning the candle at both ends. I also had been experiencing night sweats and bleeding gums which I kept thinking was gingivitis or something. Lots of small things that didn’t seem connected until it all became really clear in the hindsight of the diagnosis.

Initially my diagnosis came with a really positive outlook. I was told I had won the lottery of cancers’ because CML was now so easy to treat. Basically I would just take medication every day that kept my cancer under control and if it worked I would live a pretty normal life otherwise. 

It was all quite scary and overwhelming but I really tried to believe that everything was going to work out the way they said. Unfortunately for me, I was one of the rare few who had a class intolerance to all of the medications that existed at the time for my treatment and it became apparent within a few months that my experience was going to look a lot different than most CMLers.

What did your treatment consist of?

Initially I was started on dasatinib (Sprycel) a TKI inhibitor which was supposed to control the mutated cancer cells from continuing to replicate. Unfortunately it affected my other blood cells as well to the point where it was lowering them to dangerous levels. We had to pause treatment multiple times to let them recover and each time we tried to lower the dose to find a sweet spot. But ultimately after a year of attempting to get the medication to work I still wasn’t event taking a dose large enough to control my cancer and I ultimately was told that I would need to have a life-saving stem cell transplant in order to survive.

In April of 2019 I underwent conditioning chemo for a week and then had an allogenic stem cell transplant. My recovery was extremely challenging.

I experienced acute and chronic Graft Vs Host Disease (GVHD) which is a form of transplant rejection that can affect any muscle, organ or tissue in your body. For over two years it traveled around my body from my guts to my skin, eyes, mouth, liver and genital tract.

In order to stay alive, I had to take high dose steroids which led me to gain a hundred pounds in less than 8 months and caused severe osteonecrosis in both hips ultimately leading to a double hip replacement.

I also experienced numerous infections including a drug resistant form of cytomegalovirus that nearly killed me and left me with severe kidney damage and chronic kidney disease. As a result of this infection, I developed Guillain-Barre syndrome, a condition that causes your body to attack its own nerves leading to temporary paralysis. I spent almost 7 weeks in the hospital learning to walk and write again and it took over a year to recover as fully as I’m going to. 

What is your current medical status?

Currently I am cancer free. While my experience with GVHD was awful, it’s one of the reasons I am cancer free. Following my transplant my cancer was still detectable, but GVHD Triggers a secondary process called Graft Vs Leukemia where in addition to attacking yourself, your body also attacks your cancer cells and ultimately my GVHD response was strong enough to also trigger Graft Vs Leukemia and kill the remaining cancer cells leaving me undetectable.

Based on your own experience, what advice would you give others that were diagnosed with the same type of blood cancer?

If you’ve been diagnosed with CML, the outlook is great. There are new drugs that have been approved since my diagnosis that likely would have allowed me to avoid a transplant had they existed then.

They’re even starting to work towards some people achieving treatment free remission which was previously something we didn’t think was possible.

There are so many options of TKI’s now that for most people you’ll find the right fit for you and live a mostly normal life.

If for some reason you feel like your treatment path doesn’t look like fellow CMLers and you’re starting to get worried, be honest with your doctors and ask for answers.

The best thing you can do is learn about your illness, learn about the testing, understand the tests and results so you can play an active role in your treatment and be able to ask questions of your team and understand why they’re doing what they’re doing.

What was your life like before your diagnosis?

Before being diagnosed I was at the peak of my life and health. I had recently been married and bought my first house. I was the lead singer of country group Runaway Angel and we had just returned from touring Europe and releasing our second record and it felt like around the corner all my biggest dreams were so close to coming true. It was incredibly painful and there was a lot of grief involved in having to hit pause on everything for four incredibly long years of the hardest experiences I’ve ever faced.

How is life different for you now post diagnosis?

My life is very different now. I’m still working at recovering from my double hip replacement and the Guillain-barre, which I have permanent nerve damage in my feet from. I lost a lot of strength and muscle which I’m working on trying to build back.

I suffer from severe PTSD which I’ve been doing extensive psychotherapy to work through… But it’s not all bad! Cancer really shifted my perspective on a lot of things. It made it clearer to me what really matters. It made me more compassionate and empathetic to the suffering of those around me. It made me patient, strong and taught me how to rely on myself. Keeping track of all of my appointments and medications made me a more responsible person.

I was also diagnosed with ADHD following my transplant and finally getting on medication and understanding how it affected my life has really shifted a lot of things for me and lifted a weight I had been unknowingly carrying alone for many years. It also made me recognize how much fear had been holding me back in my life before cancer. One of the first things I did when I recovered was buy a place in Nashville. Something I had regretted not doing when I was sick, and I knew I had to take the chance no matter how afraid I was because the taste of regret is something I never want to taste again.

Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?

One of my biggest fears when I was diagnosed was losing my husband. We had been recently married and I was terrified that this experience would be too much for him. I think a lot of people would have walked away. Having to support me for nearly 4 years while running his own business and keeping our house running was an insane amount of work and dedication but he showed up like no one else. He had my back and never wavered and it was his strength that really set the bar for me to aim for. His strength kept me strong in my darkest moments and ultimately the experience brought us closer together than we were before. I am forever grateful that he stood by me.

In terms of my other relationships, cancer plus experiencing it during covid was extremely isolating. I had to experience so many significant things alone and work through so many things in my head. As my recovery stretched on, I started feeling awful continuing to put the weight of my struggles on friends and I started to turn inwards to deal with everything. This made me a very quiet and introverted person compared to the loud and extroverted person I was before and I’m still working on learning to talk to people again and find my voice and place in relationships after cancer.

How has your cancer experience affected your body image, and your relationship to your body?

In a lot of ways cancer disconnects you from your body. You lose all sense of shame. People are constantly poking, prodding, stabbing, cutting you. I lost my hair. I’ve had both hips replaced. I had to learn to walk again. I gained and lost 100 pounds. Every time I looked in the mirror it felt like I was looking at a stranger and even though I told myself it was all temporary it still feels like I’m trying to reclaim old parts of myself that seem like they might be gone forever. There’s a lot of anger and sadness about how much of myself was completely stripped away and how much work I’ve had to do to build it back and still have to do. In a lot of ways I still feel very disconnected from my body and am still working at rebuilding that connection.

What are some lifestyle changes you’ve made since your diagnosis?

Definitely because I experienced nearly complete paralysis, moving my body is something I just appreciate and treasure so much more than before. Just getting up and moving my body is something I need to do for my physical and mental health. It’s about more than weight and looks- it’s just something that feels good that I appreciate so much because I know what it feels like to not be able to move and how desperately I would have given anything then to move my body.

Because my body went through so much I feel like I value physical health so much more than I did before. Eating healthy food, getting exercise, but also taking the time to care for my mental health and spiritual wellness matters so much more to me than it did before.


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