My only experiences with cancer before I was diagnosed were either:
1. People who beat it and
2. People who didn’t beat it.
From what I saw, beating it meant no longer having cancer.
Beating cancer or beating it back
There are centers that have a bell ringing ceremony when someone completes treatment. I’ve seen cancer survivor celebrations. They are like birthday parties and some people call them re-birth days. Some people return to work, return to busy lives, and plan their futures with decades in mind.
Then there are those of us that aren’t so fortunate. Treatment ends with an admission to a palliative care center. There is no return and instead a celebration of life when that life ends.
When I was diagnosed with leukemia in 2011 I thought it would go only one way, and maybe that way would be gritty because I’m so darned stubborn. I mentally prepared for a rather complicated treatment program, thinking it would end within a few short years.
I didn’t know about the In-Between.
It was year two of treatment when my oncologist was unable to find a support group for me in my area. Everything available centered on those who had survived cancer or those prepping for palliative care. There was no in-between.
My oncologist recommended private counseling services
It was year three of treatment when I attended counseling with a recommended social worker. In our first session she acknowledged the horror of staring at one's own demise. When I told her that I wasn’t terminal she very delicately reminded me how difficult reality is to accept sometimes. She told me that making preparations in a timely manner is very important. There was no in-between as far as she was concerned. I ended our first session quickly.
Last year I joined a cancer surviving and thriving group online. I introduced myself and described eleven years of continuing leukemia treatment to shocked and astonished faces. No one in the group had been in treatment nearly that long. They had beaten it somehow. They were in recovery. I felt like an alien, a circus freak, or maybe a pink elephant in the room.
The In-Between is a strange place
It's a strange place where people are unsure whether they should congratulate you or feel bad for you. I mean, I’ve survived leukemia for a decade now. That’s incredible, right? Amazing. Then again, I’ve only had two chemo breaks in a decade and my treatment dose has just been increased… again. That’s terrible, right? Awful.
The in-between place doesn’t give a designation or a destination. Am I a cancer warrior about to win the battle and ring that bell? It doesn’t seem so. Am I losing the fight and making plans for palliative care? Not at all.
Being in active treatment for years with no end in sight makes the in-between place very confusing, not only for everyone else, but also for me. Being in active cancer treatment affects everything in my life, yet I still have a life.
Connect in the Forum: How do you deal with life in-between?
I haven’t beaten it, just beat it back.
It’s a whopper of a different perspective here in-between. Every time I beat cancer back into submission I am filled with gratitude. Life seems sweeter, like candy does when we finally get some sense of taste back, you know? But this cancer is an unwelcome passenger with quick rapid fire punches. It’s not too long before it’s rearing its ugly head again and I’m beating it back …again.
All this wrestling means I am not who I was before cancer. I am not who I thought I’d be, either. It’s an in-between place where you just never know what you are willing to fight for until you are actually fighting for it.
For some of us that fight continues for years and years. We dodge and weave and bend and just as we are about to break? We beat it back again! We’re not cancer free and we are not palliative, we are just gearing up for the next battle.
It’s been over a decade for me and this in-between place makes me both grateful to have a life and determined to live it the best way I can. I’ve been told that the in-between place is the best I can hope for. I doubt that. I know we can beat it back until one day we break out.
Have you ever felt like you are in-between? Let me know what you are thinking in the comments below. How do you deal with life in-between?
Have you met another blood cancer patient?