So now that I have celebrated my 4th year post stem cell transplant and left cancer far behind I have a new feeling coming over me.
It feels like a warm, gentle summer breeze sliding over my skin. Like the cotton from the poplar tree that looks like summer snow, it fills me with a sense of calm wonder.
It's a gentle sense of relief.
As cancer patients we are always on alert to our bodies and the grim reality of how close we may be to have something fatal happen, even when the cancer is gone. Stepping out into life when the chemo stops feels a lot like going about our lives pretending we can't feel the breath of death on our necks. No one seems to understand. In fact they can't understand unless they have been through it themselves. There's always the anxiety of wondering if that's another lump or in my case if the weeks blood test results will show blasts.
Truthfully it's hard for me to even think the words blast much less type it here. I scour my blood test results, once a month now, looking to see if there is any odd morphology results. When the the results say they were sent for further analysis because something was off I feel the light pricking of horror. I can see the distress my organs are in due to the graft vs host but I ignore it and go on. When I don't hear anything in a few weeks I relax a little because no news is always good news.
When I was able to leave the hospital after my transplant I refused to give fear the time of day. I refused to let it rule me, I refused to let my mind wander to the 'what' if's, and I refused to dwell on it. Fuck fear. If I was going to die tomorrow I wasn't going to waste my time going out that way.
My life is MY LIFE and I will always keep it that way. It's kind of hard to maintain that stance when you hear of acquaintances predicting your death, have excommunicated 'friends' call your parents asking to let them know if the cancer comes back and a lot of other bullshit that goes down.
This shit is hard. Living post cancer is hard.
Well, my 4th rebirthday felt like a release. I know the first 3 years statistically are the ones to mostly likely have a recurrence. Cancer patients are weighed down with a lot of stats. Before my transplant I thought, "fuck the statistics', but then I realized the the stats came from the hospital I was in. Out of all the hundreds of people that go through their doors, a certain number don't go back out. They weren't just random numbers.
As I went through the process of the chemo and my transplant, the people who I had spent all my time with in hospital, and had gotten to know, died. One by one, they died. People my age, people with spouses and children. How do you deal with that? I felt terror and guilt and anger and grief all while trying to stay alive. I lay awake in the hospital aware that the nurses were listening to me breathe and while they did that I was petrified that I would stop breathing.
When they passed on, I pacified myself by saying over and over that they unfortunately were taking the bad part of the stats for me and I was the percentage that would live. I was right. I may not be at my 5 year point yet but I know I am right.
As hard as I tried to get though all this without having deep effects, I have failed. But is that a bad thing?
I grieved and wondered why I was left while others were gone. I am completely aware that it's survivor guilt but that doesn't do anything to alleviate it. I'm so sorry. To the beautiful people I had the privilege of knowing and sharing that intimate time of our lives with, I'm so sorry that you had to go while I stayed.
But I am here.
AML is a brutal cancer but I stand to let the world know that it CAN be beaten. Cancer is becoming more and more a chronic disease rather than a fatal one. With every year that passes the medical science gets better. The hope is only growing.
So now that 4 years are behind me I feel that old feeling of security sifting over me. Of course there is no real security in life but I feel like death has left me. I don't feel it's presence like I used to. I'm on a loose leash with my oncologists now.... the graft vs host problems are winding down. Really, I see no reason why my life can't just get a whole lot better from here.
I'm heading into some uncharted territory and have my life to get back.
I have been writing this blog since I was 1 year post transplant. It was in reaction to my frustration and anger that I was still very sick and incapable of even taking care of myself. I needed to feel like I was accomplishing something and writing little snippets of how I saw things kept me going. Through this process of isolation from the world I have been able to feel like I was still worth something.
This blog has brought me more than I could ever have imagined. It connected me to others, gave me some self worth, helped me open up and to mentally process what was happening to me in a way that was mine.
And people responded. It turns out I wasn't the only one feeling like a square peg in a world of round holes. So in a way I accomplished my original goal. I couldn't find any upbeat, inspiring, funny, slightly morbid places to see on the net so I made what I would have liked to have found.
At the time all I could find about living through cancer was misery and sorrow. I wanted light hearted and real. Cancer is not a death sentence but it is a life sentence. Might as well laugh about it and cry about it when needed. And what I mean about life sentence, is that it's a heavy experience that you'll keep forever. It's part of you.
Every experience that we have ever had, we can use to our benefit.
So now that I feel like a door has opened to the rest of my life there are some things I've been dying to do. Not literally of course. Every time I felt frustrated, overwhelmed and hopeless, I wrote down something I would love to do when I was better. Some of it was simple, like feeling my bare feet in the sand and on cool grass rather than a hospital floor. As a result, I didn't wear shoes or socks for over a year except when I had to. My toes froze on many occasions but I was so happy for it.
My list has been growing and I finally know I can begin to tackle it... or should I say experience it? This is NOT a bucket list. This a list about reentering life and living like I mean it. I know every moment I have is borrowed and valuable. There is no time to waste.
*list to be compiled and posted tomorrow, or whatever tomorrow means in my current world, which could be in a few days*