March 30: Let the fun begin

I started this blog to keep family and friends up to date. I didn't want to use social media like Facebook because this cancer is not “who I am” or who I will be defined as in the future. Its not that I am ashamed or embarrassed about having cancer I just didn't feel like this was something I wanted “joe shmo” to know..... we all know that person.... the one who likes to know things just to know things and be the one to tell everyone else. Ha!  And then there is the connotation of making such an “announcement” on FB.... you know what they say..... its not official until its facebook official! 🤦🏻‍♀️. Who needs Social media anyway...I am in awe of how many people have reached out just through word of mouth! Thank you.
Well, as times has gone on I realized writing  this is actually therapeutic for me. Its become a way to get all the balls we are juggling in one spot and helps make what can be so overwhelming seem not so bad. The hardest part with online blogging away from home is doing it on an iphone. See what happened there, that was my way of finding an excuse for any grammar errors💁🏻‍♀️

Friday afternoon we heard that insurance did not approve the proton radiation despite a peer to peer so we move onto an appeal which Dr Oliver is working on right now. The denial is super frustrating but we are not laying down and taking it. To be clear, it was denied by AIM, a company hired by Premera BCBS (our insurance company) to do prior authorizations. Friday night I took to Premera’s Facebook page (ok ok so sometimes we do need social media 😛)...... and in about an hour they responded asking me to send them my contact number and thirty minutes later they called (at 7pm CT on a Friday). We chatted for about an hour- most of the time it was me holding them hostage on the phone until I politely told them everything they needed to hear. And by politely I mean..... well everyone knows me well enough to know what I mean.....

“ I am appalled that you would go against the recommendation of an oncologist at the world’s #1 hospital and deny proton radiation treatment to treat a very rare and aggressive malignant carcinoma. I am a 41 year old mom of two kids with my whole life ahead of me. Proton therapy will help prolong my life, protect the vital organ adjacent to radiation which is my heart, lungs and breasts and dramatically reduce the risk of future malignancies. Shame on you.”

I expressed very clearly my concerns with having one of their medical specialists review the appeal. You see when we couldn't find a cause of my SIADH at home I utilized a benefit we have with Premera and had an expert medical doctor review all my labs, hospital records and images and give us his expert opinion on diagnosis plan and treatment.  I was assigned a nephrologist at Harvard Medical and his plan was- continue NaCl tabs, eat more protein and monitor sodium levels. He was more concerned with wondering if I was vegan rather than investigating deeper!


Eric too was proactive emailing top executives at Microsoft. Their response was even faster than Premera! Surprising for such a huge company. By the end of the day he heard from the Executive VP of HR, who engaged the GM of global benefits and the SR director of global health and wellness benefits. We are hopping that with Microsoft and Premera being actively involved now that the appeal process will be expedited and we will have more info by mid week. 🙏🏻🙏🏻🙏🏻

 If the radiation they want to do here is not covered we will head home and get conventional radiation.  As much as I would LOVE to be home I am terrified of the affects conventional radiation will have on my heart.  (With conventional radiation we run a great risk of affecting my heart because the tumor they removed was attached to the protective barrier of my heart and thats the site if radiation).

The weekend was, well boring! We went for a couple walks but pretty much everything is closed down until mid April. I did get a couple deliveries this weekend which was super exciting and helped pass the time! My friend Brooke send me an echo dot so I can have music 🎼 playing. When i got it up and running the first song “alexa” played was Three Little Birds  “every little thing is gonna be alright”...... Hoping thats a sign from the music gods. Im so blessed to have so many friends and family wanting to make this easier on us.

We have a busy week!! Today is chemo for dummies day...... ie chemotherapy education appointment with oncology nurse. And in all honesty i do hope its dumbed down a little. Ive learned that this is not as “scary” when people tall to me like a patient and not a NP.  I have always tried to explain things to my patients in words that make sense.  Looks like  I was onto something!  Plus it saves me the energy to have to remeber everything and explain it to Eric. Tomorrow starts round 1A followed by 1B and 1C..... good times! Never thought I would be excited to undergo chemo- funny how your mindset changes when you have no other option. I love a good challenge and I am ready to take this on full steam and get it the hell over with!

********AS OF 10:30CT TODAY INSURANCE HAS COVERED PROTON RADIATION***********
We will be staying in MN for about the next month. I have an address if anyone wants to be my pen pal!

View from our room of Mayo Clinic and attached hotels 

Two of the main buildings on Campus