Almost 3 weeks ago, I took a covid test and it was positive. I had been feeling tired and a little congested, but I thought it was just because I had been stressing about going to that chorus weekend and once I was there, I relaxed and had a great time. But woke up on Sunday feeling sketchy, so took a test when I got home… First timer. I haven’t had covid once until now – August 2024. I often refer to my cancer year as another period of time with pandemic rules… that, and we’ve been lucky. Thankfully it was just a couple of days of fever and tiredness. I had the mild version, but I still don’t recommend it.
So, covid virginity gone and isolating from my partner in a smallish apartment. When I told my mom, all she had to say was, “You’re still coming to Great Falls, right?” So, of course I had to go to Montana and help with the preparations for our Family Reunion and to spend time with my mom. The reunion attendees included my 3 brothers and 2 of our spouses, 7 nieces and nephews, and our matriarch – my lovely Mother.
One of my nephews was in charge of the schedule and he knocked it out of the park! We made lots of good meals and fancy drinks. We played games and played music together. We made each other laugh and had deep discussions. Relationships were re-enforced, healed, renewed, and newly begun. I hadn’t seen some of my nieces and nephews for more than a decade and it was so lovely to see them now, more adult than I remember and absolutely living great lives!
And as I listen to Christian editing the video in the other room and hear the sounds of my deceased father’s saxophone, I’m reminded of what a beautiful family I have. We genuinely like each other AND love each other, and that appreciation was an integral part of the whole weekend. I am truly grateful for my family.
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 I’m 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 “work it out”.
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 cancer’s 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 prevail… 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 I’m 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 woods… 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 didn’t sign off on this or that, a paperwork was submitted wrong, or they didn’t have the right fax number… 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 price… even in a life or death type of situation. I can’t 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 company’s to pay off the cost of all the R&D that I’m 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 “free samples” 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 much… and I know there are many women out there going through the trauma of cancer treatments and survivorship who don’t 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, I’m pretty sure nothing. I’m 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…
