Saturday, May 31, 2014

Secret Fears that are not So Secret

Sometimes there has to be some distance between the event and the reflection to make some sense and have some perspective. When we are in the heat of the moment, we can only do so much and take in so much. 

I thought I was pretty much on top of everything until I went to a survivorship conference.   They are all sort of the same. Cancer World people. Inspirational speaker:  I had cancer and I made it and I don't have any problems. (Denial is a great coping mechanism.) 

When you enter cancer world it is all about survival.  What percentage of kids with this kind of cancer "Survive".  I totally understand the need to be so focused but the longer you are around, the more you realize that percentage is only a tip, the very very tippy top of the iceberg of information.  

It is so so complicated and each kid is different. There are things they don't want to talk to us about or they mentions in passing. As we are going down the road, we find out about them.  I can remember when I sat there and heard someone that had treated Mary-E explain that Spinal/Cranial radiation continued to damage their bodies for 3-5 years.   That is a long time in a child age 12.  

I could not believe I had missed that little fact but went back to this blog and sure enough, there it was.  Clear as day.  In my inane babbling about heavy doors shutting, eating and sleeping problems, I had missed an important fact.  These life saving doses of radiation were taking away her brain and thyroid and God only knows what else.   For 3 to 5 years. 

But... do we not follow the protocol. The time tested method of trying to beat this thing. Probably we do what we can to help her live.  

It is only later, in the aftermath and years later do we try to second guess ourselves. 

Should I have done this.....?
Could things have been better if I had done this........?
What would have been the result if we had tried....?

I remember be terrified to know we were going to miss a round of some chemo.  How do we make it up? Will it come back if we don't do more?
How do we know if it is really all gone?

We walk out of clinic for the last time. We note the last bit of Chemo. We celebrate the end of treatment, we go on a Make-a-Wish trip.  

We close our minds to all the doubts that sit in the background.  The stirrings of worry. The little bits of dreams that are unsettling.  We do our best to ignore it.  We want to believe that if we do all the right things and say all the right prayers and banish Spam and other processed foods from the diet, things will be okay.  

Charles Hemenway, MD, PhD. clearly is not a tuned in pediatric oncologist.  He has not seen his patients go through treatment, relapse, try again, relapse, try to find a last ditch drug and study and then watch long slow downward drain of the life that came into the world with so so much promise. 

There is a 70% cure rate.  There is a 30% death rate... The kids endure with grace and courage massive treatment and pain and suffering. 

We fear we will be part of the 30% or the 60% or the 95% of children that die.  We hear the odds, we play the odds but we all know we have no way to change the odds, no matter what we do or how hard we try.

No wants to think about the downside of all of this but it is real. It is there and happens. 


No comments: