Yesterday I came home from treatment and my daughter’s friend Sara was over for a play date. As I came through the door she gave me this:
Interesting how kids interpret the things adults and other kids deal with every day. I have never spoken with Sara about Cancer, Multiple Myeloma or any thing about my troubles. I am sure Ava has and her father is one of our assistant basketball coaches and a great friend. But the thoughtfulness of putting her feelings down on paper and making a bracelet makes me wonder – what do KIDS know about us and how much of our daily conversations to KIDS understand and absorb?
My kids know a lot – probably too much – of what I am going through. The thing about it is they have trouble, I am sure, expressing their ACTUAL thoughts. The fact that my MSpike being at zero brought tears out of Victor – that he holds that stuff in – saddens me.
Ava has to do a research project for school. They have to pick a subject and then research about it on the Internet and write a report. She chose MULTIPLE MYELOMA. The fact is – she knows about it. She asks me about it and understands the basic concepts but do we want her on the Internet READING about this horrible affliction – which so far, by the way, has NOT disrupted my life as it should or as it has others? NO! Sweet a thought as it is, we encouraged her to find another topic: Ava Gardner.
So, what do KIDS know and how much SHOULD they know? From the beginning we have been honest with our KIDS. We thought about not using the word Cancer but decided that it was ultimately okay. I mean, after all, I have Cancer, right? So we told them. And we also told them that they have ABSOLUTELY NOTHING to worry about. If the medicine works, I will live a long time. And so far, the medicine is working. We also told them that what I have is INCURABLE. Even if it goes away, it will come back. But – we can manage it with medicine.
So – I am the face of Cancer for my KIDS, their friends and I imagine maybe even more people than that. Does that mean I want them to understand more? I am torn on that one. My face of Cancer is a positive one. My face of Cancer is a bold, confident, determined face. There are people – and I have read about them on the Internet – that don’t have that bold determination. Some choose not to fight – true – but MOST don’t have the strength.
I tweeted an article link about Flynn Robinson, a former NBA player and NBA champion who died of Multiple Myeloma at 72 after a TWO YEAR battle.
Do you think a former NBA champion had no determination or drive to fight this? I don’t think so. Sometimes the disease is bad. Sometimes the disease goes too far. Sometimes the disease wins. Do I want my KIDS to know THAT? What will I be like TWO YEARS FROM NOW?
I am so fortunate to have access to the best doctors, the best staff and friends and family to keep me fighting – even on days I don’t feel like it. I am determined to not miss a single thing life has to offer. I coached every basketball game, every soccer game I could – sometimes even driving up right after a treatment. One basketball game I was so nauseous I didn’t think I would make it through. I push myself harder than ever at work. Taking Fridays off for treatments means that I have to pack a 5 day week into a 4 day week in an industry landscape that right now is the most competitive I have ever seen in my career. I am determined not to miss a single day, a single opportunity to perform. I am determined to not let my colleagues see Cancer beat me.
But the TRUTH is that it might. If it beat Flynn Robinson it could beat me someday. As great as I feel, as determined as I am, I am HIGH RISK. I have a chromosome deletion that means that this is indicative of a very aggressive form Myeloma. I don’t know exactly what that means. At first I thought it meant that it would come back quicker once in remission. Now I am to believe that it means it grows and spreads faster. I don’t know exactly but I do know this: That chromosome deletion is the ONE THING that scares the shit out of me. That is the one thing that I think about when I read about guys like Flynn Robinson or anyone else who has the physical ability to fight but eventually loses.
The ONE THING I do know is that I can be scared SHITLESS on the inside but BOLD AND CONFIDENT on the outside. I will not be the face of Cancer unless it is that bold and determined face that I want my KIDS, all the other KIDS, my WIFE, my FRIENDS, and my COLLEAGUES to see.
I am FORTUNATE to be young, strong and DETERMINED to fight this shit back – FOREVER. and that is all I want KIDS to know.
Two soccer games today. Two baseball games today. Another great day to fight Cancer.