There is this little voice in my head that tells me to organize 1500 blog posts and write a book. Maybe a Dummies Guide to Cancer World Survival. In going through Cancer part one, I am realizing how different Relapse World is from the first time around. There are two books here.
Part One is an easier book because in most of the cases there is an end in sight. While no one believes it when they are starting Cancer World does become more manageable. You learn that the schedule is a lie. You can't count on counts. The side effects can be managed. Essentially you learn to cope. You learn to go with the flow, accept help and you let other people fold your laundry. You can see the end and can sort of power through.
Now there are plenty of bumps in the road. Weird infections, blood clots that require constant attention, hair coming and going, different color chemotherapy, long lasting effects from all of this treatment. It is hard. It is excruciating. Lots of people just fall apart. But there is an end. Once the panic subsides and you are able to look around it does not take long to get to "We have the good kind of cancer." It is doable.
Relapse World is ugly and treatment and the emotional roller coaster is so different. First there are no answers that can be given. It is much more terrifying because when it didn't work the first time, the doctors are more afraid the second time. They pretend they are not but they are much more nervous. There is no clear and certain protocol. No straight line. It is more like the Harry Potter Maze. Lots of dangers and low cure rates. They know that we can exit the maze unexpectedly and many have.
It is more frightening because they have to take out the big guns. The dark blue chemo's, the big radiation machines, the big double lumen Hickman lines. Nothing is held back. It becomes very clear that there will be no passes, no skipping of chemo, no withholding steroids for an impending dance. It is serious and terrifying and mindbogglingly.
But again, like last time, you settle into the ride and close your eyes more, retreat to watch 650 episodes of Dark Shadows. You limit your contact with the outside world. No big plans for trips are made, no end of treatment party is planned. You begin to wonder if you will ever trust again. You get angry faster and more often. You start to want to kill people who say things like "What do you do all day?" "Why does Mary-Elizabeth still have to to go the hospital?" "Isn't it over yet?" Its never going to be over!!!!!
I guess we are sort of like the Upper Classmen in a very small and highly competitive and exclusive school. Our job is to be leaders and help the younger classmates through the process. We share the secrets of how to survive in the hospital, and what much of the jargon means. We help the other parents by listening to them and assuring them they are not the first to be horrified by _______________________. Fill in the blank.
As the Upper Classmen we are good sounding boards but are reluctant to share our stories too freely. We remember the blood curdling screams that when off in our heads the first time we heard the word RELAPSE. We know better then to let the new people know our story.
The biggest difference now is the size of the group of relapse parents. It is a much much smaller clan. Very reserved, very scared and have good reason to be. They don't here numbers like 85%, 90%. They hear 40%, 10%, or even worse.... Plan a trip to Disneyland... and not in the happy Make-A-Wish sort of way.
There is also the death thing. I only remember the loss of two kids during our first round. Both relapsed before they were done with the first part of treatment and both died. This time is different. Kids are dying before they even get to transplant. When one dies, we all have to work very hard to regain our balance. Each time it happens it takes longer and longer to straighten up again.
The one thing that is not different is that we still are supportive of each other. We still reach out, we still go the extra mile. We still have good things to share and lots of support and love to give each other. We all live with the knowledge that we are fighting the most important battle of our lives.
I still think we need to commit to cure this thing and learn to prevent it.