Sometimes I catch myself so caught up in the present moment that I realize I haven’t taken time to look ahead, or to reflect on how far I’ve come. And then I look at the calendar and realize that one month from today I will receive my first dose of chemo to begin the reboot of my immune system. I haven’t even thought about what that might feel like in my veins, or how it might taste, or how my insides will react. The moment I consider it, the big picture takes over. Inspiration from my 96-year grandmother who has survived three different types of cancer. Gratitude for the overwhelming support of friends and family to make sure my transplant happens. Solace from knowing that if I hesitate even one moment longer, this opportunity might pass me by.
Today I remembered to finalize hotel reservations to secure the “hospital rate” (I’m required to stay close to the hospital after my first dose of chemo so that if I have any bad reactions to the neupogen shots (to boost my production of stem cells) before harvest on 10/2, I will be within minutes of the teams that know the proper protocols) and then gasped at the $3,050 bill. Then I remembered the tolls to get into downtown Chicago and the $22/day “hospital rate” to park the car. Then I remembered that for twelve days I’ll need to buy, prepare, and eat food that is probably quite expensive on the magnificant mile.
Then I remembered the letter I received last week informing me that my final appeal to overturn the denials by insurance ultimately failed. The independent reviewers upheld the denial because they agree the procedure is “experimental” when offered outside clinical trial. Even though the clinical trial at Northwestern is technically not over (they are still treating patients that were part of the control group – just not enrolling new patients – as they finalize data and publish reports before applying for FDA approval), insurance doesn’t agree. After hearing from others who were similarly denied by insurance, I am hopeful that after the first phase insurance will reimburse most of the expenses (except harvesting, storing, and returning my stem cells) so that I can begin to pay back family who generously offered significant loans in order to make this happen. The moment I stress about the idea of paying back $125,000 I start to think I should just cancel. Maybe I could wait it out, right? Suffer for four more years until HSCT is approved by the FDA and then insurance will cover it without batting an eye.
Then I hear The Hiders sing “chances fly past you, just as fast as a bullet. and if you don’t pay close mind, you may never know it” and I remember that this – now – is my last chance. Back in May Dr. Burt told me this is my last chance – because my MS is so aggressive, he wouldn’t even offer me the procedure a year from now.
So I want this chance. To walk more than 10 yards without struggle and to make it more than five consecutive days without a hard fall. To take my daughter to the zoo again, teach her to ride a bike, practice yoga, and maybe one day I can teach her to rock climb…
It seems the next four weeks are about to fly past and as I finish up work projects, write the last of the daily notes I will leave for my daughter, declutter the house, and visit with friends and family for what may be the last time until spring, I hope to pay close mind and maybe even find time to think about packing a suitcase… maybe in a couple of weeks.
Be happy. Be well. Be present.