Wednesday, February 14, 2024

Cancer with a Sign

As a person living with an incurable chronic cancer and as a cancer patient advocate I am always looking for ways to support having our voices heard.

I am happy to help support this new initiative taking place called #CANCERWITHASIGN.

Details below as posted by The Cancer Collaborative

Cancer is no laughing matter, but sometimes, you've just got to find the humour in the chaos. That's why we're inviting cancer patients, survivors, caregivers, advocates, anyone really, to share their wishes, experiences, frustrations, ideas, and even funny quips about their cancer experiences by holding up a cardboard sign. Its cancer meets dude with a sign.

Whether it's poking fun at the endless waiting room waits or expressing a real desire for change in cancer care, the #CANCERWITHASIGN campaign is all about using humour as a powerful tool for connection and advocacy.

Grab a marker, get creative, and join us in sparking conversations about the ups and downs of the cancer journey. Let's turn our frustrations into fuel for change. 

Share your sign, share your story, and let's make some noise for a world where cancer isn't just survivable—it's laughable. join the #CANCERWITHASIGN campaign today!

dm us @cancerwithasign on IG or send an email to cancerwithasign@cancercolab.ca




Wednesday, January 31, 2024

We Don't Get to Ring The Bell





Back in July I wrote a post about some books I thought were worth sharing. They were not specific to CML except one but all worth reading in my opinion.

I just recently read this book by Anne McAuley Lopez who is living with CML. I really enjoyed it. If you are curious about what it's like to live with CML this is the one book to read.

It can be easily downloaded or purchased through Amazon - Kindle. 

We Don't Get to Ring the Bell

If you do not have an amazon account or use kindle or kindle app, reach out to me and I may be able to help.



Monday, January 1, 2024

New Year, New Beginning…….New Direction?





What was the idea behind starting this blog? 

I have told this story before but I think it needs to be revisited to understand my thought process.

When I was first diagnosed in 2017, I did not feel like I was given a lot of support from my medical team. I spent weeks scouring the internet looking for answers and hoping to find someone else to talk to.

I did finally managed to connect with Lisa who runs the Canadian CML Network. She sent me some information and was able to connect me to someone that lived closer to me. I can tell you, that made all the difference to me. So much so that my husband and I made a plan to travel to her city to meet in person. Lucky she lives in a great place to visit which is only about 4 hours by car. 😄


When it comes to CML we do have a few organizations dedicated to education and support. Here is a list of 3, but there are a few others as well.




 
So what more can I add? 

That's what I keep asking myself. 

My original goal with getting into patient advocacy was to help anyone newly diagnosed with CML have someone to talk to and help guide them to information. 

We all know you can head down a rabbit hole looking stuff up online. 

I will continue to share my story whenever I can but because I struggle with daily fatigue I find it hard to post as much on this blog as I’d like to, so it’s not really reaching as many people as I was hoping. 

I’ll be doing a bit more thinking over the next few months to see what I feel is the best direction. 

Wednesday, September 27, 2023

The Faces of Blood Cancer - T-ALL

 

What was/is your diagnosis?

T-cell Acute Lymphoblastic Leukemia (T- ALL).

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

I was tired, coughing, and bruising. I thought maybe I had low iron. I went for a blood test. I found out when I went to see the hematologist. 

What were your first thoughts when diagnosed?

I was in shock...told the doctor I couldn't stay because I didn't have any pjs 🙂 but I was admitted right away.

What did your treatment consist of?

I did the debate Farber pediatric protocol

What is your current medical status? 

I've been in remission since November 2016, finished treatment in November 2018.

What was your life like before your diagnosis? 

Before cancer I was on the go all the time.

How is life different for you now post diagnosis?

Life after cancer my saying is “The mind is willing but sometimes the body isn't able.” which gets frustrating.  Still dealing with chemo brain though it gets less as time goes on.

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

For relationships some people walked out of my life and some walked in. I don't blame those that walked out because maybe I would've done the same.

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

I gained 80lbs and still have 60lbs on but I've come to accept that.

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

My piece of advice contact LLSC and get a peer supporter through their peer support program, it was a game changer for me. Having someone my own age to talk to that had the same diagnosis and received the same treatment as me.




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.






 

Friday, September 15, 2023

The Faces of Blood Cancer - ALL


Not only is September blood cancer awareness month but it is also childhood cancer awareness month.



I'm very happy to introduce you to Amelia who was diagnosed with blood cancer when she was only 2 1/2 years old. 

Her Mom Veronica was nice enough to share only a small part of Amelia's cancer journey with me.

They continue to share updates and other stories as well as support organizations that were a great help to them such as LLSC and Candlelighter's by participating in Light the Night Walks and doing bottle drives and more.

You can check out her facebook page at Amelia's ALL.

The questions were answered by Amelia’s Mom.

What was/is your diagnosis?

Acute Lymphoblastic Leukemia

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

Canada Day weekend 2018 - we noticed our 2 1/2 year old daughter Amelia limping as she chased her older brothers around the campsite. As the weekend progressed, she walked less and less and so we immediately arranged a doctor visit upon our arrival back in town. The night before we brought her in she had a slight fever of 99 F that came and went with medication, and a little prickly purple rash on her legs. Then, when we were literally in the doctor’s waiting room, she looked up at me with blood oozing from her gums. 

Once the doctor heard the symptoms, she sent us straight to Janeway Emerge where we were shocked to learn all signs and tests were pointing towards blood cancer.

What were your first thoughts when diagnosed?

Shock. I couldn't believe this was happening. It was surreal. She was my youngest baby. My only girl. And what would I tell her brothers? How would we tell them? And that I had to pull it together because my husband already lost a cousin to the same condition and how must he feel... 

Amelia didn't understand of course and there were no words to say.

What did your treatment consist of?

Amelia was admitted and the next day we received confirmation that she had Acute Lymphoblastic Leukemia.  We spent the next 2 weeks in the hospital with her, during which time she received 11 blood and platelet transfusions, started chemotherapy, underwent surgery to install the port in her chest through which she received most of her treatments and spent 5 days in ICU covered in wires due to complications.  Then she was discharged to continue the rest of her treatment as an outpatient through the Janeway’s Medical Daycare Unit. 

After the intensification period of her treatment was done, blood tests indicated there was no evidence of disease. Remission! The first hurdle - phase 1 of her treatment - was done!

 She still had several phases of her treatment protocol ahead of her and so for the next couple of years Amelia would receive chemotherapy via IV's, lumbar punctures and even orally at home in addition to steroids and antibiotics. During the first 5 phases, chemo was administered in hospital anywhere from once every 10 days to 4 out of 5 days and sometimes daily at home. In her last phase, which lasted from April 2019 until September 2020 she received chemo orally at home every day and once every 3 months via IV at the Janeway. 

It was intense! 

She finished her chemo in 2020 after 803 days of treatment and continues to be healthy. She is active and happy and finally went on her Wish Trip this year!

What was your life like before your diagnosis?

She was happy, vibrant, full of life. A regular toddler.

How is life different for you now post diagnosis?

We think every day how grateful we are to the hospital, to blood donors, everyone and every organization that has a hand in saving her. I still get to hold my baby, not everyone who hears "your child has cancer" does.

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

The conversations I had with other parents of childhood cancer patients and/or with survivors helped normalize what we were going through, which enabled me to be in a better frame of mind caring for her. Reach out to the hospital patents group, your local Candlelighters group or connect with a peer through the Leukemia and Lymphoma society of Canada peer support program. Even if it is via email. Even if you only go one time. Even if it is just one phonecall. I learned a lot from the parents we met through the hospital waiting rooms, Candlelighters and the LLSC. 

Treatment is 2-3 years, you don't have to feel alone.



If you look at the picture above you will see Amelia wearing a necklace of beads. Each bead represents a treatment or procedure such as a course of chemotherapy, hospital stays, blood work and many more. 

For more information on this program you can check out the webpage Beads of Courage Canada or visit their facebook page.






Wednesday, September 13, 2023

The Faces of Blood Cancer - MM

As stated on the Myeloma Canada website - 

Every day 11 Canadians are diagnosed with myeloma, yet in spite of it's growing prevalence, the disease remains relatively unknown. To date, there is no cure for myeloma, however advancements in research and treatment are enabling those impacted by myeloma to live better and longer lives than ever before. More research leading to new therapies or new combinations of therapies are required to find a cure.

I’d like to introduce you to Alyssa Dickey who was diagnosed with Multiple Myeloma.

She is a patient advocate, is involved with Myeloma Canada and is part of the steering committee for the Health eMatters conference which helps empower cancer advocates.

You can check out her facebook page Myeloma in the Middle to learn more about her experiences with Multiple Myeloma.


Here is a bit of her story in her own words.


I share my story often, but especially in September. If it helps one person this month I know I have made a positive impact.

In 2010, when I was 32 years old I was diagnosed with multiple myeloma (mm for short). Multiple myeloma is the 2nd most common blood cancer, but many people (including me) have never heard of MM until we are diagnosed with it. So, when we talk about blood cancer awareness, with multiple myeloma there is still a lot of work to do!

Getting a cancer diagnosis at 32 was pretty shocking. But, at the same time, it was very validating. You see, I had been experiencing many symptoms and feeling like crap for several years. I kept making appointments with my family doctor and pushing for "specialists" but no one caught the cancer. 

Women, especially young women still face barriers in healthcare. I just didn't realize it at the time, and I hadn't found my voice yet to speak up for myself and demand answers.

Blood cancers like MM can cause general symptoms. I had fatigue, bone pain, infections, and night sweats which were all more readily explained by other things. As my health declined I knew there was something seriously wrong with me. When my heart was tachycardic and I was fainting from minimal exertion I started showing up at the ER. I was finally diagnosed when an ER doctor realized I was severely anemic and had an extremely elevated protein in my blood (hallmark symptoms of MM).

The scariest part of hearing I had multiple myeloma was also hearing there is no cure. From day one with cancer I knew I would be off and on treatment for the rest of my life, and that my life would be shortened by cancer.

Well, I am happy to say it's been nearly 14 years since I was diagnosed. I've had one relapse but have enjoyed two long periods of remission. After relapsing my treatments were more intensive, with multiple drugs, a salvage stem cell transplant, and then a few rounds of consolidation chemo followed by oral weekly chemo. This lasted for 3 years. I chose to stop my maintenance treatments and have maintained NED (no evidence of disease) for 2 years. With MM the standard care now is for continuous treatment, cycling through meds while we wait for a cure.

If I had to pick one thing that had a positive impact on my recovery I would say it is being active and staying active. Not only do I enjoy my gym routine, and sports like biking and skiing, but the physical and mental health benefits that come with it. Being diagnosed as a young adult I wasn't ready to give up so when the multiple Myeloma comes back my body will be ready.