Ever climb a sand dune?? It is a series of stepping up just to slide down, step up more and slide again. Progress, but slow, hard progress. This feels like our lives right now...exhausting! Mayleigh and I went to see Dr Sharman in Eugene yesterday for labs, chemo and a talk about options since Mayleigh had such a bad allergic reaction to the last chemotherapy drug that landed her in the ER. He started with the good news first that we CAN work with our local oncologist to have 3 of the four treatments needed (during SOME of the consolidation therapy protocol) each week in our area. We were then informed that there is another drug substitute needed to replace the drug she's allergic to. It however, will require 6 treatment doses for every one dose of the drug she's allergic to and that this drug is EXTREMELY rare so we need to do infusions of it in Eugene. So, we are required to follow an INSANE protocol to treat her A.L.L cancer & add in an INSANE number of additional treatments due to allergy; then throw in traveling for more than 2 hours each way for most treatments...that's enough stress for anyone right? Then we add in that Dr. Sharman MD in Eugene is required to work with Dr. Latan MD up at OHSU in Portland...who is now required to work with Dr. Cook MD (local doc) in order to get the 3 out of 4 treatments locally (sounds great right??) but after hours of phone calls later to determine who is overseeing the insurance coverage/pre-authorizations, who is liable for the treatment at which location, who is in charge of making sure the orders for the Outpatient infusion center got the drugs needed and that the schedule for all doctors, clincs, rides, insurance pre-authorization and patient is ready in order for that all to happen? That's right...ME!
This ladys expression is how I'm feeling right now. As I continue to figure this all out, organize and argue with doctors, clinics, hospitals, insurance and making sure there are rides to and from each appointment...my heart aches thinking of anyone who doesn't have a feisty advocate (momma bear) to jump the hoops to ensure the treatment protocol is even being followed. Cancer patients who require this kind of treatments have enough to stress over and "chemo-brain" (as Mayleigh calls it) & should NOT have to do what the staff SHOULD be doing. That and it is they who also get paid good money from us and our insurance to do their job!! Being that I have a full time job as momma bear and a more than full time job running my company Framehuggers...along with a part time volunteer job as the VP of our diabetes association (while living/treating my own type one diabetes) and trying to move Mayleigh, Ian and 2 Chinilla's, 2 Guinea Pigs and a hedgehog into out home...well lets just say I may need some prayers for my sanity please :)
As we aim our arrow ultimately at our goal; we will have to accept that the slip in our steps is not setting us back; but is instead a force of energy behind every struggle that will propel us to hit that target dead center! I'd like to thank my incredible husband who has dedicated this entire last "holiday" weekend at the school district (as he's been the ONLY computer technician for the last 8+ years) working from early morning till after midnight, trying to play catch up on what should have been a relaxing 5 day break before school started. He had to transport and unbox new computers, update and or install software on every computer,install all smartboard & projectors, update websites (mine and schools), start training a new computer tech (yea but more work to train), educating himself to pass tests required to become a Google Certified Trainer so he can educate teachers....all this just to come home & hear my woes. He is my rock and helps me keep/find my sanity in his loving arms and listening ears (sorry I make your ears hurt). You hold me up Larry Workman (along with an entier school district) and you should get Man of the Year award in my book!!!
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