Over the course of this blog I have talked about a lot of details of this cancer journey, but today I want to talk about the part I find the scariest. I have said from the beginning that the mental game of cancer is the hardest part, and that’s certainly true for me. When I was told the diagnosis, I didn’t cry, I didn’t melt down. It’s almost as if I knew it already, and I sort of did. My body had told me all was not well, and I knew whatever-it-was had a name and needed treatment.

The first meeting with the surgeon when she used the word “cancer” in every other sentence while speaking a little louder than I was comfortable with – all of that hit me like a jack hammer. I could not leave that exam room with any denial left in my bones. I did not appreciate that very much. I had The Thing, and I knew life was about to get turned upside down! One of my first questions (that didn’t have an answer then or now) is “how much is this going to cost?”

That was January, and today we’re already in May nearing the half way point of chemo. Today I looked over my health insurance account to get a feel for where things stand. I compared notes on my calendar with the line items and now I can tell you that a biopsy is about $4,000, an MRI is about $6,600 and surgery (Dr Surgeon called this “a simple procedure” but to me it was “surgery”!) to install a port and remove a few lymph nodes is close to $20,000. The real surprise for me was that my first chemo was $97,870! Second chemo was $70,400. My head spins when I look at numbers like these. My health insurance is a school policy that goes from August 2022 to August 2023, but my treatment won’t be over by August, so we will be into a second year of deductibles and caps, etc.

My total is now over $230,000 and if you want to know what scares me… that does.

I’ve had the third chemo, but it hasn’t shown up on the health insurance site yet, and there are three more chemo infusions to go after that. And this doesn’t count surgery, radiation, and drug therapy after that. Anyone want to guess where this total will settle out?

I find myself looking for treatments to refuse just because of the insanity of these numbers. I do have insurance, which is supposed to cover a lot of this, and I’m watching the percentages. In the first 60 days it looked like insurance was covering about 49% of the bill, and thankfully that percentage has gone higher in recent weeks. I’ve noted all the times it says “denied” and how many times I see “processed”. There is a lot of unknown here, and find the financial aspect every bit as challenging as the physical aspects. Will we have anything left financially when this is over? That’s a real question, and right now it doesn’t have a real answer.

I have heard a lot of people talk about their cancer story. I have heard zero of them talk about the costs. We do ourselves and our community a disservice when we are not public and open about these things, especially when we live in a “civilized” country that views health care as a business opportunity rather than as a human right. That’s not right. It’s not Just. And it’s especially not fair. There are a lot of people going without needed basic healthcare because of the expense. We can do better. We deserve better.

I’ve heard people say I’m handling this well. Well, what you think determines how you feel, and I have been paying close attention to what I will allow myself to think. Nevertheless, this part is hard, and it’s ok not to be ok about these things. I recognize my authentic fears and discomfort in this season. I recognize and honor your fears and valid concerns with absolute solidarity!

Early on I had a great nighttime nausea medication that had me sleeping better than I have in years. Feeling rested helped me keep my thinking (and therefore my feelings) in a positive zone. I’ve even started napping (on the rare occasions when the place is quiet enough to allow it) which is just weird! I’ve not been able to nap for years! I believe the additional rest from the medication really helped me feel rested and to be in a more peaceful place in this journey.

I’m not a big fan of living in limbo, but that’s my home address these days. I know we are held in Everlasting Arms. I know provision comes our way like rain comes to replenish the soil. I quiet myself and look for Jesus in the midst of the fear. I play music that reminds me who I am, and whose I am.

We live in a country that prioritizes the profits of the medical and insurance industries over the health and well being of it’s citizenry. I stand witness to that injustice and how it impacts me, and how it impacts you. It’s time that changes. I recognize how difficult this journey is – especially the financial aspect of it. You are not alone.

Sending love your way,

Carmen