Weekly Update #35

I mentioned last time that I was going to be on the local news – here’s a link to the clip and article. It was really great to get to talk about the work I have done with my local clinic and how much I enjoy being treated there. I am so happy to be able to help build a cancer center that I get to be a patient of as well.

I’ve been putting off this post because it’s going to be hard to talk about what I want to talk about. I am hopeful that getting it out there will be a net positive, so I’m being brave and tackling it.

I know my boundaries about cancer information really well. I know what will provide me comfort and what will give me anxiety. And last week I crossed that boundary and I truly regret it. As I talked about in my last post, I was worried that I didn’t have the rash that I had been told is correlated with this treatment being successful. I was curious if that was really true, so I googled and I read a research paper about it. And it is true, per that paper, that getting the rash within 8 weeks is indicative of a response. I’m at 4.5 weeks now and the rash has been progressing, so that anxiety is lessening. Additionally, when I mentioned it to my team last time my nurse mentioned that there may be some new research showing the correlation isn’t that strong, so I am waiting to hear back on that.

The tough thing that I saw in that paper was the overall survival of the patients, from the time of their first dose. The longest person lived 4 years. I have accepted that my disease is incurable and can process that news in terms of living the life that I want to now. But seeing a number that is far smaller than I had hoped in a scientific paper has really thrown me for a loop. It has meant sitting at my 7 year old’s ballet recital and wondering if she’ll stick with it long enough to dance point and realizing I won’t live long enough to find out. Thinking about whether it sounds more tragic to die at 39 or 40 – is it sadder to miss the new decade or just reach it? Four years is so short, and I know that not all of my last years will be good ones, so how much good time does that mean I have left?

The study I read is 4 years old, and I know that means that the medicine I have access to will be different. And that I am none of the patients in that study. I am trying very hard to hold onto these facts. I think there is value in preparing myself for my eventual death, but not in focusing on counting down my time when we don’t know what the clock is set to. If you see me in person I don’t want to talk about it, but I would definitely take a firm hug. And if you see me electronically, I’ll take the intention of a hug.

23 thoughts on “Weekly Update #35

    • I’m giving you the biggest and strongest hug right now. And I’m not a hugger 😉. I don’t know which paper you are talking about So I don’t know the details, but you are not one of those people and a lot can happen in 4 years, since that paper was published. Continue to dream about watching your daughter grow up!
      I had a colonoscopy last week and I thought about you. I mean not while I was on the shitter during the prep, (ha!!) but while I was waiting for the procedure.

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  1. I’m going to repeat it anyway: you are not a statistic and lots of medicine can happen in 4 years.

    Chin up! It’s easier to receive all the hugs that way!! 😉

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    • It helps me to remember that the paper is 4 years old, and if the patient lived 4 years, then the patients had to be treated at least 10ish years ago. That's a huge amount of time for medicine to progress.

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  2. The biggest hug I can send virtually is heading your way. Keeping you in my thoughts and sending all the mojo your way. ❤

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  3. Big hugs!!!

    Here’s the thing… medical studies are usually carefully vetted to not allow people who have differing circumstances or are getting ANY other treatments which might impact the study of the thing in question. Unless of course, they want to study something in tandem/combination. So that study is just about that thing and nothing else. You have other options and such, so your results are not going to be the same even if that’s your only “treatment” for a period of time.

    Hugs again!

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