When my son was diagnosed with a high risk cancer, I learned so much about life and the twists and turns it can take. I also learned that many of the things I thought were true, or would be true, were very simply not. The following are fifteen assumptions I found to be false on our incredible journey.
Myth #1. Life With Cancer Sucks.
Sometimes it did. Of course it did. But the majority of time it did not. You have to remember, our cancer journey was over the course of five plus years. And three and half of those were active chemotherapy. There was no way I was accepting “a life that sucked” for three and half years let alone five to seven. With or without cancer. So no. Life didn’t suck. Life was full of wonderfully rich adjectives, and with a gratitude that was palpable. And remember, everything is relative. You better believe life is sucking more for the family who was diagnosed (or unable to be diagnosed) in a third world country; or a country without health coverage; or circumstances where the child has no support. Life was still life. It was ours. And no one was going to tell us it sucked.
Myth #2. Knowledge is Always Power.
When your child is first diagnosed with a life threatening disease you become like a blank slate thirsting for every piece of information you can garner about their diagnosis. But then after a little while you step back and you start sifting through all of that. You ask yourself, what really matters? Do I need to know everything about everything? Do I need to know every possible thing that “could” happen, or is it better for me to have a strong foundation about what “is” happening? And what sources do I trust? Where am I getting my information from? Sometimes knowledge isn’t always more power … it’s just more knowledge … and not always reliable knowledge at that.
Myth #3. Tomorrow Will be Better.
Nope. Tomorrow might be worse. Tomorrow might be the day that never gets better. I’m very much an optimist, but I was always planted firmly in reality as well. There are no guarantees. Tomorrow ‘may’ be better or it ‘may’ be the worst day of my life. I guess it’s that little “will” I couldn’t get over. There are no absolutes. But there is today.
Myth #4. You Have to Have Hope.
Again. Nope. I would rather have no hope than the illusion of hope. I would rather have an educated true understanding of what we are facing than have a false hope. Again, it’s that “have” to have.
Myth #5. Blood is Thicker than Water.
I am so lucky to have some mighty thick blood in my family. My Mom and Dad proved how to walk the talk during so much of this experience. Which trust me is a difficult thing to do over the marathon that is childhood cancer. Their support was immeasurable. Aunts and relatives who came to the hospital and sent cards and gifts lifted my spirits so much, even though outwardly I may have looked exhausted. We were so blessed. But make no mistake, I also learned the viscosity of water can, in a few particular amazing people, be just as thick or thicker than blood. And I discovered that the whole ‘blood versus water’ thing mattered not. Blood or water has little to do with the people who decide to step up, and in turn for the people who just don’t. It has little to do with blood. And everything to do with the people who choose consciously to walk beside you in the world no matter what.
Myth #6. Sharing in Others’ Experiences will Lighten Your Load.
This one reminds me a little bit of the child birthing experience where sometimes, in some cases, some mothers feel the need to share every horror story there is … in a very unsolicited way. And boy, in the cancer world it really depends where your mind and heart are in your journey with whether you can take in all those stories of other children’s side effects and experiences. Many times these side effects were rare, but significantly life changing. I found it often burdened me down with worries that may never occur, rather than lighten anything for me. So I became selective in what conversations I engaged in and with whom. That sounds awful doesn’t it? But I needed to take care of me, and my load was heavy enough.
Myth #7. Numbers are Everything … when it Comes to Survival Rates and Prognosis.
False. False. False! FALSE! This a myth I debunked early on. I had to, as Mark was diagnosed in the high risk category of cancers. I found I had to, in order to live the life I needed to for the kids, for our family, and for myself. The reality is … our experience is … you can beat the odds. And getting weighed down in survival rats and prognosis when the numbers are firmly against you achieves nothing, and can significantly harm the time you have – which we all know is only ever “now”.
Myth #8. Numbers Mean Nothing … when it Comes to Blood Work.
I know I just said numbers being everything is false. But when framing it in the context of bloodwork, they ARE in fact everything. I lived and died by those CBCs. They told me so much. How he was doing, what tomorrow may look like, whether we could hope for a jaunt to the playroom, a walk in the park, or the brass ring of going home. And when we did get home those numbers mattered because they affected our daily life, and therefore what memories and moments we were able to experience. Would the day entail an afternoon transfusion of platelets, or instead a trip to Hennigars? We made our fun no matter which it was … but those Hennigar days were precious, and the numbers helped us get there.
Myth #9. Crisis Brings Out the Best in People.
It doesn’t always. And you have to learn what to do with that at every turn and at every experience. There will be the people who don’t come to the hospital because it’s too difficult for them. For them. For THEM. Sigh. There were others who just seemingly dropped off the face of the earth because they didn’t know what to say. I had to learn to forgive all these people, to see things from their point of view, or to let them go from my life. I have chosen all three at times.
Myth #10. Facts are Clear Absolutes.
There are very few absolutes in the childhood cancer world. Facts must be communicated and they must then be received. This must happen in an environment that is both unequal and unfathomable, to both the oncologist and the family. The frame with which this is done, which health professional is telling you, and where you are as the parent emotionally, all significantly affects how you interpret a so called fact. Trust me.
Myth #11. It’s All Part of a Larger Plan.
Ummm … Hi. There is no plan. There is a big difference between believing in a larger plan and a higher power. And if by some small measure of truth there is a larger plan, trust me, you don’t want to hear about it. The ending isn’t always good. Even for children. So no. My plan didn’t focus on anything larger. It focused on getting through the day, whispering thank you for the day, being present in the day, making the day incredible. For Mark. For Megan. For me. For us. It was about the day. It was about the here and now. It was no larger than that. And it didn’t need to be. At least not for us.
Myth #12. The World Stops.
Guess what. It doesn’t. I remember my first time leaving the hospital after diagnosis. I had no understanding how everyone could just be living their life. It was then I learned you think it stops; but it doesn’t. And sure, it may stop for you. For a few moments. But even then it keeps on turning pretty damn soon after those words are uttered. Because those bills keep coming, the animals still need to be fed, and work eventually needs someone back all too soon.
Myth #13. It Takes a Village.
Sure a village is nice, but I found not required. I didn’t really have a village. I had just moved, and at that was in between homes. As in physical houses. The village I had nurtured was hundreds of miles away in a different Province. The majority of this journey we did on our own. There were no freezers full of casseroles or no neighbours popping by. There were no friends offering to help with Megan. We knew no neighbours and we had no friends here yet. And that’s not a ‘woe is me’ thing. That was just the way it was. We literally were in the middle of a move to a brand new place. So yes. A village would have been nice. I know it would be different now having established relationships here. But we still managed pretty ok without it.
Myth #14. Home is Where the Heart Is.
I’m afraid sometimes home is home, and it has nothing to do with the heart. Sometimes it’s brick and mortar and your very own bed. I know there were many nights in the hospital I felt this way as I lay on a cot next to his bed. And I know I felt this the night that Mark lost his first tufts of hair as we were lying on a mattress on the dining room floor of my parents house. We were waiting for our new home to be built and while we were in the hospital had to move out of our rental that was our temporary home. On that night when I saw his hair on the pillow as he lay beside me, home wasn’t where the heart was. That night I wanted nothing more than to be in my own bed in my own home …not some transient, homeless gypsy, sleeping on the floor waiting for drywall to be erected in Avonport.
Myth #15. The Oncology Floor at a Children’s Hospital is a Horrible Place To Be.
People have this pre conceived notion of what an oncology wing at a children’s hospital is. I know I did. They have visions of bald little children with tubes coming out of them, being poked and prodded, waiting to die. I guess parts of that sentence are true. But the reality of the floor is so very far from that notion. We laughed and played and lived a lot of life there. We met our strongest allies and our fiercest champions. We built relationships second to none. We saw the definition of resilience. You see, it couldn’t possibly be a horrible place to be, because lives are being lived so fully there each and every day. They are being valued and treasured. And they are being appreciated … at least I know they were by one family … because after all, it was there where I first started whispering thank you.