News – Page 4 – Kate Kohler

Zejula

August has been the month from hell… Not only are temperatures around the globe breaking records, but my hot flashes are setting some new ones and so are my moods…

Zejula is my cancer maintenance medication. Its other fancy name is Niraparib Tosylate. I started taking it and then my cancer team took me off of it for a week or so because my blood work wasn’t quite right, but after restarting it, my body seemed to be adjusting to it quite well. The side effects are manageable. This drug is a parp inhibitor, which is a new kind of cancer drug that targets my particular cancer cells.

So, I go to refill my prescription on the specialty pharmacy website and get to the checkout area and my copay is ridiculous (like there’s nobody can afford that kind of ridiculous), so I pause and call the pharmacy and they have me call my insurance and they tell me they don’t cover that medicine, even though they had covered it in July. So, I call the doctors office not knowing quite what to do.

Two weeks of phone calls and paperwork, and I still don’t know exactly what went wrong with my insurance… Was it because the manufacturer stopped making capsules and replaced them with tablets? Was it because my oncologist prescribed the first round and my PA prescribed the second? Was it because the pharmacy was trying to mail it from out of state (they do have an in state location)? Was it because the exact right form wasn’t submitted to the insurance company? I may never know…

Our health care system is broken (blog post for another time), but I’ve been super lucky this year with how much of my care was covered… But getting this drug, this life-saving, hopefully curative drug, has just been maddening. Not to mention stressful. Aren’t you supposed to keep cancer patients from being stressed out?

Anyway, I ran out of pills in the meantime and my treatment was interrupted for about a week. My oncologist didn’t seem too worried about it, so I’m trying not to worry… Wish me luck with that.

The good news is that the two weeks of phone calls and paperwork paid off and my insurance is now covering part of the drug. My copay is still ridiculous, but I also applied for a copay assistance program that the manufacturer has in place, because they know how expensive it is. So, I’m covered… For now…

And I finally received a bottle of pills on Tuesday and for that I am very grateful.

Fight for what you need!

Kate, with a very serious expression, holds a UPS pharmaceutical delivery box with the word CRITICAL on it.

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Ovarian Cancer Awareness Month

Cancer, Creative Process, Gratitude, Musings, News / Kate Kohler

September is Ovarian Cancer Awareness Month.

I want to make some noise about this cancer, that is too often diagnosed late. Please, help me spread the word!

Here are some places that are doing really good work:

Read my blog post about ovarian cancer symptoms and what to watch out for.

I will walk 60 miles in 30 days to help raise money and awareness for Ovarian Cancer Research Alliance.

I have teal heart earrings on etsy available. And for the month of September I will include a teal cancer awareness ribbon pin and a $5 donation to Ovarian Cancer Research.

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Remission

Cancer, Creative Process, Gratitude, Music, Musings, News, Photos / Kate Kohler

Journal Entry 8/2/23

I am in remission. Officially. Was told by two different doctors that I can say the word remission and mean it. It feels like it’s not real, but it is.

Cancer has changed me in so many ways, I don’t think I can even describe the scope of it. but I’ll try to tell you some of the things.

There are some obvious changes.

If you look at my belly you will see a foot long scar (pubes to boobs). It’s healing nicely and I have unexpected impulses to show it to people.

I am still bald, but my hair will grow back. I’m almost tempted to keep it shaved. It’s my cancer card. My excuse for having groceries delivered (the delivery drivers don’t seem nearly as judge-y when you answer the door with a bald head).

Inside of me there are a whole bunch of parts missing. Thankfully, I don’t seem to miss them at all. Although their absence creates some menopause like discomforts, like hot flashes and heart racing and vaginal dryness, but we don’t need to talk about that.

I think I escaped most of the neuropathy, but I do have some tingles in a couple of fingers on my right hand sometimes.

Less obviously is the tiredness that comes from the treatments. They say that recovery time is 2 months per 1 month of treatment, so I should be back to something like normal in about a year. Although because I’m on a maintenance drug that may take longer. In lessons and socializing with friends, I seem to have enough energy to act “normal”, but then I definitely need a nap that afternoon, or the next day.

My brain doesn’t work as fast as it once did. And I sometimes get words mixed up as they are coming out of my mouth. It could be amusing, I guess, but mostly it’s just a little frustrating and I have to slow down and reset and have compassion for myself and speak slower.

My spirit is struggling to make sense of the cancer still, but more than that, I’m examining my life and the way I spend my time. The things that I want to do with the time I’ve got left.

Because cancer reminds you, that you will die. Hopefully I’ll still get to be an old lady with long white hair, but I don’t know that for sure anymore.

And so, I rest. I play. I love. I write. And I try to create more music, because my voice is most easily expressed in music.

Kate, wearing glasses and a black beanie, leans back in a chair by the fire pit in a friends back yard.

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