9 years post-BMT. (It’s) *still* crazy, after all these years.
For the most part, this blog was set up as a way of giving you updates from The SAMFund and providing information about young adult survivor resources when we have it. But once in awhile, we will also be sharing things of a more personal nature — because, after all, we’re all in this together. This week is one of those times. I woke up this morning, had a good, long cry as I do every year on this day, and now — here we go.
Each year, August 24th hits me like a Mack truck. During the rest of the year, I can focus on everything else. I stay busy with work, school, family and friends. I’m even starting to forget the names of my chemo drugs, which is not entirely a bad thing. But August 24th brings it all back into focus. And as I reflect back, I am simultaneously grateful, terrified, humbled and overwhelmed. It’s a loaded day, to say the least.
I have struggled with what to call it. It’s not a purely celebratory day, though I do know it’s important to acknowledge the day I got my life back. I hope it goes without saying that of course I’m thankful to be here. But while I celebrate the fact that I have been able to go forward with my life for the past nine years, the memory of the (too many) friends lost during our time in treatment together becomes more vivid than ever. Mandy. Stacey. Jeff. Jason. Jack. Kim. Peyton. I miss you more than I could possibly put into words.
After a year of treatment for Ewing’s (which, incidentally, ended on August 25th, 2000), hours upon hours of chemo infusions, more days and nights in the hospital than I care to remember, one 12-hour surgery and a bunch of smaller ones, a secondary diagnosis of Myelodysplastic Syndrome right after my 23rd birthday and more experimental chemo, it all came down to August 24th, 2001. So, I call it my “re-birthday” (or, “rebirth-day”).
That day in the hospital – with my parents right next to me, surrounded by my friends and family, listening to Sarah MacLachlan on the CD player as the sun streamed into my room – was surreal. I remember the doctor walking into the room with a teeny tiny bag of what looked like blood, and I clearly remember wondering how in the world that was going to help me. We all watched as it traveled through the catheter tubes directly into my veins. I’m not sure what I was expecting, but I didn’t feel any great change at that moment. No shower of balloons from the sky; no sudden surge of I-don’t-know-what in my body. And yet, it was the biggest moment I will ever know. Life-changing, to the nth degree. Life-giving.
August 24th is an annual, automatic perspective check. It forces me to take stock of where I am, and remember where I’ve been — and sometimes it’s so overwhelming I literally can’t move. (I was once on the corner of 72nd and 1st, down the street from the Ronald McDonald house where we spent so many days and nights, and had to call Adam because I didn’t know what to do. I was paralyzed. I think it was my very first – and hopefully only – panic attack.)
I can’t totally explain why, but things feel different to me this year. It’s not that I can suddenly stop worrying about cancer’s aftereffects or the possibility of another diagnosis. The flashbacks of those days in the hospital hit me this morning, just as they always do when this day comes around. And the survivor’s guilt doesn’t subside as one more year passes by. But yet, for some reason, as I take a step back and look around, things feel… Stable. Happy. Productive.
For years I have insisted that I don’t want cancer to be the one thing that defines me — and yet, ironically, I’ve designed my life and my career around it. But for the first time, I’m finally starting to see myself as more than my cancer experience. The SAMFund may have started out of my own personal story, but it’s now about a much larger community of passionate, motivated young adults trying to find their way through this crazy experience called survivorship. They are the ones moving The SAMFund forward. And as my own story becomes the background and I am able to focus on my role as the Executive Director of a thriving, growing organization, I feel more empowered than ever.
The SAMFund has now awarded $500,000 in grants and scholarships, with hopefully another $75,000 to $100,000 — in addition to a brand new program (more on that soon!) — to be added this fall.
I’m continuing to teach a class at Brandeis, which has given me a much-needed, non-cancer-related outlet on which to focus some of my time during the fall semester.
And, most importantly, I now have a beautiful little 6-month old son who, with his beaming smiles and his infectious giggles, reminds me that there is more to my life than cancer. Without a single word, he is teaching me how to stay in the moment.
So, on this August 24th, I still grapple with a rush of emotions. I feel the survivor’s guilt. I am in shock that nine whole years have passed since that one pivotal day. I remember the fear of not knowing whether I would ever blend in again. And as I do my annual check-in with myself, and see a full, well-balanced life, more than anything, I feel… content.
There’s one more side note I want to include before I end this post. You all probably already know how The SAMFund got started in 2003 when my friend and I became aware of the lack of financial support for YAs post-treatment and decided, without fully realizing what we were getting into, to do something about it. But you might not know why all of this happened in the first place…
I’ve mentioned many times how grateful I am — and how lucky I am — for the constant presence of my parents (all four of them), the unconditional love and support of my husband, and an incredible network of friends and family who have had my back for the past nine years (and many years before that). But there are two people — who are so humble they wouldn’t want to be named here but I know they know who they are — who are probably most to thank for The SAMFund.
When we were trying to figure out where we would live for the year following my transplant, these two amazing friends basically appeared out of nowhere and arranged for us to move into an apartment close to the hospital. Two years later, they were among the very first to get involved with The SAMFund. When I wanted to go back to graduate school, they provided me with a full scholarship. And when I wanted to spend more time on The SAMFund in its earliest days, they helped me with my living expenses so that I could follow a dream.
The SAMFund is, truly, a tribute to them. Their generosity when I needed it most is testament to the fact that when financial barriers are taken away, anything is possible. To them, I say thank you — for giving me the opportunity to provide that same feeling of relief, of empowerment, and of support to so many others.