It seems like my world expands and contracts each day. My focus is everywhere and nowhere!
I’ve been getting very active again in my Santa Monica Chorus. Teaching ear training each week and learning a $hit-ton of new music! If you know a little about Sweet Adeline’s and my barbershop life, you know that apart from chorus rehearsals every week, our regional organization gets together two or three times a year to sing and compete (and of course bond and party). This year my chorus is competing in October at the International competition in Kansas City and we’re excited and hopeful and perhaps positioned to make it to the top 10.
I’ll be going to Summer Sizzler (another event) in Oxnard next week and competing in a double quartet contest with a pickup group called šKALEIDOSCOPEš. In our package we’ll search for and sing songs about Rainbows…
I guess that’s what I’m doing in my everyday life these days, searching for my rainbow. Not the pot of gold, although that wouldn’t hurt, but my hope and possibility after the rain… I’m exploring my new mind and body with each breath. I’m not sure exactly who I am anymore and the discovery process is intense and fraught, even though I’m super grateful to be alive and kicking and moving pianos around – something I thought I would never (and probably really shouldn’t) do again.
I am having a hard time getting back to writing and playing the piano, but I am doing a lot of art… Which is incredibly therapeutic and informative about my evolving state of being. Here are some pieces that I have made in the last few months.
Update: I got my pills this morning! Finally… April 16, 2024
April 6, 2024
I have been without my maintenance medicine now for four days and Iām experiencing a strange blend of emotions, somewhere between terror, gratitude, and rage as I sit here on hold with the insurance company once again trying to āwork it outā.
As some of you know, I started taking Zejula in August, soon after I finished chemo in July. Zejula is a PARP Inhibitor which is like this crazy heat seeking missile which targets the cancerās ability to multiply while leaving my own cellar growth intact. It was pitched to us as the best thing since slice bread to happen to ovarian cancer survivors and in particular my cancer makeup exactly. The only problem is that it costs 15-21 thousands dollars a month (depending on dosage), and I cannot even remotely afford that. Who can?
Never fear, the American healthcare system will prevailā¦ said no one ever. It is not until you see first-hand exactly where the rubber meets the road (or the fax meets the computer) do you get a sense of where the breakdown happens and even then… Maybe Iām biased but what is the point of my insurance company spending a quarter of a million dollars pumping me full of chemo drugs, going through several minor surgeries and 1 major one; removing my reproductive organs, spleen, and omentum so that they can drop the ball at the last minute? I was just beginning to feel like I was out of the woodsā¦ It just does not make sense!
Nor does it make sense to give me this false sense of hope, where somehow between the insurance company (LACare), the pharmacy, and the drug manufacture they can miraculously cover the full 21K each month and I can have a fighting chance that this thing won’t come back. Except every month or two a seemingly new issue occurs, preventing me from getting refills. The insurance company didnāt sign off on this or that, a paperwork was submitted wrong, or they didnāt have the right fax numberā¦ apparently there are so many different type of things that can go wrong in the tangled bureaucracy that is our healthcare system, that a new issue DOES go wrong way too often…
How do you even price a high-stakes maintenance medicine like Zejula, I doubt very many people could afford it at a quarter of the priceā¦ even in a life or death type of situation. I canāt believe that there are a bunch of pharma-bros sitting around trying to squeeze cancer survivors out of more money? I assume they get the insurance companyās to pay off the cost of all the R&D that Iām sure went into this drug, but then why is the insurance only paying 30% and I have to rely on being subsidized by the drug manufacture (GSK) or the specialty pharmacy (Optum Specialty Pharmacy) itself.
So I sit here on hold, with the doctors office (UCLA Medical), with the pharmacy, with my insurance company, and with the drug manufacturer for hours at a time. My treatment has now been interrupted on 4 separate occasions in the last 8 months, too bad there were no āfree samplesā to tide me over until the other paperwork goes through. I would estimate I spend close to 8 hours of time on the phone each incident (this last week was at least 12), it feels like a part time job. But you would be surprised how much hold music one can take when you feel like you are fighting for ones life (sometimes I just go to the piano and play along). But I have never been more motivated in my life to be on the phone with polite persistence, because what other choice do I have. Who do I yell at? Who do I blame for the countless hours spent on this hope? I do want to stay alive!
I think of the people who are alone, who are not lucky enough to have the amazing group of friends and loved ones who have supported me throughout this process and who help to keep me going. I am good girl, a try-hard, a rule follower, I do tend to be pretty responsible in life, but even for someone like me this often feels like too muchā¦ and I know there are many women out there going through the trauma of cancer treatments and survivorship who donāt have the time or energy to keep pushing like this after such a traumatic fight. Do they just give up and let their prescriptions lapse and wait for the cancer to come back? Not to mention people in other countries where this drug is not even available.
So what can be done about it, Iām pretty sure nothing. Iām just going to keep sitting here on hold, listening to shitty music until I get somebody that can help me get over this latest snag and I can get some more of my luxury cancer medication. God bless America!
Kate plays On Hold music for you over and over and over…
