Honoured Teammates are very special individuals who have battled, or are battling, a form of blood cancer. TNT participants train and participate in endurance events in honour of these courageous individuals. So often people are asked to raise funds for a charity with very little understanding of how valuable their efforts are. By honouring a member of our own community, and hearing their story firsthand, participants are able to understand the extreme value of their efforts.
After a few months of remission, in the fall of 2011, she started showing signs of Graft Vs. Host Disease (GVHD), which happens when the donated stem cells (graft) perceive the host's body (MC) as foreign, and attack various organs, tissues and glands, often for months, sometimes for years, hence affecting the recovery process and quality of life. These reactions are common with transplants and are managed to various degrees of success, using various medications and close monitoring, but still have potentially life-threatening complications. MC have been experiencing these complications since the winter of 2012. More research is needed to better understand and manage these issues.
MC. The support and encouragement from the staff and participants keeps me involved in TNT. It means that my journey matters, that I matter and gives me incentive to keep on pushing myself. It makes me think of something other than my own issues. It is rewarding to know that we are informing and educating people.
ZJ. You once described an analogy of training for a marathon with battling cancer (when you addressed our Montreal Marathon team). Clearly they don’t really compare, but there are some parallels. Can you offer some words here?
MC. The comparison to a marathon compares in that at the beginning everything is daunting and overwhelming. You need to take it one day at a time, one step at a time.
You have good days of progress and set backs where you need to push through. A marathon is not life threatening but the idea of training remains the same.
You have to set small attainable daily goals and bigger goals and you chip at it. Attain the smaller goals, change them, without losing track of the bigger picture. And don't forget to reward yourself. When you think you can't go any further, stop, regroup, lift your head, set an attainable goal and keep going remembering why you're doing this. Have a visual reminder, a name, a picture, a thing to touch and trigger your motivation.
ZJ. Wow, there is so much good stuff for me to hang onto and remember as I train for the marathon. Thank you! It is true that we need to keep our minds on the "why" and how what we're doing truly matters.
I have been wondering MC, are there any misconceptions about cancer out there that drive you nuts? Is there something you wish people could understand better?
MC. Yes, there are a lot of misconceptions. Not all cancers are the same. Blood cancers take a different toll on the body than tumor cancers since you just don't get surgery and chemo and that's it. Not that tumor cancers are less dangerous and less intrusive but less is known about blood cancers. Some people need transplants some don't. Even transplants are different according to the type of blood cancer and/or the person themselves.
Some blood cancers have long term effects some don't, but all are life changing. They change your body, your spirit, your take on life and how others perceive and treat you.
Blood cancer can change into other cancers, it can be affected by GVHD and affect a whole bunch of organs such as in my case (eyes, nose, mouth, digestive system, gut, liver, lungs, skin, spleen...) Digestive system and liver issues were life threatening for me and liver still a huge chronic and acute issue. Eyes, nose mouth skin chronic issues right now.
Severely immuno-compromised always an issue which makes me susceptible to bacteria, virus and infections. We rarely die of our illness, we die of an infection our body can't fight or organ failure. In my case, the meds themselves can be life threatening and affect your quality of life from long use like steroids which deconditioned me to the point where I need to build all my muscle mass, learn how to stand and walk again.
It has also rendered my spine very brittle where the simplest thing can give me fractures (coughing, stretching, moving the wrong way...).
Not much is known about blood cancers, GVHD and the right med combination to manage and control all these issues, more research is needed.
We must also remember the social, economical, and personal burden of blood cancers, especially those with long lasting effects. All cancers have a huge emotional impact but let's not forget that life goes on around you, old and new bills accumulate and money is tight. That for me is a huge impact that no one thinks or talks about.
Once I'm done dealing with the health issues, I will not be able to work for a long time so as I am worrying about recovery and healing, I also worry about bills and having enough money to provide for my needs on a daily basis. This of course is not covered anywhere but is part of a patient's journey, financial stress.
There's also the stress of isolation when severely immuno-compromised. That's a whole other challenge.
ZJ. A lot of truths here. Cancer is very complex. There are so many forms and it affects each individual so uniquely. Blood cancers do need specific research because you're right, treatment used for solid tumours are not going to be appropriate for something in ones blood. I appreciate your other insight as well, on how this journey has impacted you bigger picture. Oftentimes conversations about cancer include only discussing the disease rather than the overall impact it can cause for an individual. MC, can you tell me what the real power of funds raised by the LLSC? Why should we continue to fundraise? Do the funds really make a difference to people like you?
MC. Money raised benefits much needed research in understanding the diseases and discovering new drugs. But beyond that patient services include education and valuable information to patients and their families, as well as support services such as info sessions, get-togethers, potlucks, support groups etc., all needed to help us cope emotionally and mentally with these diseases. All this is provided by LLSC. Otherwise it would be too overbearing and overwhelming to do this alone. I am doing it alone and LLSC and TNT are like family for me.
ZJ. I hope you know that your TNT family thinks of you often and everything we do, is inspired by you. You have an incredible courage to face what you've had to. Thank you for sharing your journey with us. Any words of encouragement for me, in my TNT journey? And for my summer teammates?
MC. As you can see from my previous answers, all money raised is extremely beneficial both for research and patient services. Some of the benefits I see directly, and research will benefit patients down the line.
When you think about joining TNT to raise funds for LLSC, it benefits all blood cancer patients now and to come. When training becomes tedious, or it's cold and wet, think about doing it one day at a time, one step at a time. As patients, that's what we have to do.
I can choose to stay in bed and not make any effort, or push myself and make a difference. I have my days where I don't want to be doing this. I have days of frustration, anger, disappointment, sadness and pity parties. (This week being one of them)
In the long run, I need to remember that I get out of it what I put into it.
I hope I get to meet you all soon and be able to speak to you in person and thank you in person for your dedication and hard work. It takes special people to dedicate themselves to training and to a cause.
One day at a time, one step at a time but ultimately, I get out of it what I put into it.
Thank you, Marie-Chantal!!! <3
-Zahida
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Please consider sponsoring me as I train for my next marathon. My goal is to raise at least $5000 for the Leukemia & Lymphoma Society of Canada, and support the 100,000 Canadians living with a blood cancer. Please visit www.tinyurl.com/runwithzahida to make a secure online donation.
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