I Haven't Written in a Very Very Long Time.

I was thinking about a friend that was coming to the end of Chemo and about to plan an End of Treatment Party.  We had one of those. It was great.  I bet if I dug far enough into one of my back-up drives, I could find some pictures.  

Whenever there is such an event, I rejoice with reservations.  We left treatment with such joy and celebration. It was a great time.  We rented the Lake Union crew house.  Lots and lots of people came to help us celebrate a huge point in our lives. 

Much has happened since then.  Graduation, the beginning of college, a great summer, a relapse, a double cord blood transplant, a return to college, graduation, big moves for both of us. 

While Leukemia and the entire experience has faded and been replaced with new memories, I still can't shake it sometimes.  I spend time with families newly diagnosed and those along the route.  I talk with them and they want, more than anything, to be reassured everything is going to be okay.  

The truth of the matter is that it is never going to okay.  It is never going to be the same.  It never going to be over.  It is just going to be a new part of the world in Cancer World.  

I have had moments of withdrawal because I don't want to have to put on that smile.  That face trying to make someone feel better about the fact we still reside in this place of shadows and fear. 

Often as I view the world, I feel like we are in a bubble.  The bubble moves and bends and flows like an amoeba.  Everyone can look in the amorphous bubble and we can see out but we can't leave.  Hands can touch but there is always a barrier. A simple minuscule surface that separates and divides those within and those without. Only those inside the barrier are even aware of the separation.

As a mom of a Cancer Kid/Young Adult Cancer Survivor, the worry continues.  I have a list in my head of all the things that are down the road.  Breast Cancer, Skin Cancer, Lung Cancer, Brain Cancer, Thyroid Cancer, and the list goes on.  The issue of infertility, weird skin stuff, just everything.  One of the items on my list was her needing individual health insurance. 

We faced that issue in June.  Her policy ended June 30th and she had to find something to replace it.  The search was amazingly difficult.  As she transferred out Seattle Children's Hospital, she found her list of needed "Oligists" at the Polyclinic : Endocrinologist, Hematologist, Oncology Gynecologist, and her GP that has been her doctor since she was born.  None of the available policies would give her any of her doctors.  Not a single one.  None of the plans provided for her very complicated medications.  

The entire process was interesting and educating.  There are a bunch of plans out there that our current administration came up with that would have covered her for about $6000.00 a year for premiums.  They didn't cover her doctors, her medications beyond a very specific and limited formulary, emergency rooms or medical transportation.  They limit the policy to one million dollars. Sounds good! A million dollars is nothing when you live inside the Cancer Bubble. 

She made a very hard decision and gave up all of her doctors.  She is going to have to establish care at Group Health/Kaiser.  It is so hard to educate a whole bunch of new doctors. Her history is complicated and she has been able to make great progress with so many of her post-treatment regimes.  

Insurance fear has been faced and the challenge was met.

 One fear down.  One of many to come.