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If At First You Don't Succeed...

Not great news.

Chemo isn't working.

The original area of concern seems to have responded, however there are new mutations and they are moving fast.

This week has been scary. I had a scan last Friday night and Monday evening I was able to read the results in my health portal. Some text in that report said "this is concerning for disease progression". So then we were worried with no context for 2 days until my appointment on Wednesday that confirmed the chemo wasn't working. My case was presented to a bunch of doctors Friday morning and it looks like radiation and a new chemo combination is what they came to a consensus about.

But, that's not set in stone. We will find out next week if the location can be safely treated via radiation. If not, straight to chemo.

For now, all treatment will stop until radiation is set up which means I might have a couple of weeks of feeling better.

So now we are discussing how we will spend that time. Obviously we want to take advantage.

When we had pretty good news in June we got a little "comfortable" and fell into our usual habits. But last week we had a discussion about what our expectations were for treatment. Aaron thought I was going to get remission from this and was surprised to hear I didn't think I would. Then we got this news, he took it hard.

I guess I need to be more transparent. I don't expect a firm "win" this time around. I think that I will be "receiving treatment" until it's time to go.

I used to want to live long enough for Torin to remember me, but I don't think it's going to happen. I also think about how joyful he is now and how uncertain and confused he would be if his youngest memories are of his mom as a vegetable. My cancer is going to take my cognitive functions even more than it has already. The version of me "alive" might not know him, or be able to talk to him, or able to hold him. I am devastated to even consider it, but I have to be prepared. I don't want to take the innocence away from my little boy by unwittingly denying him the true experience of the unconditional love I have for him. He will have plenty of love from EVERYBODY but I don't want to be one of the things that makes life harder for him.

However, it's technically out of my hands. Earl decides what the timeline will be so what I'm gonna do is use radiation to give him the finger, partaaay with my hubby, and smoosh face my dinosaur. 

The scary week is just about over and the new plan is being hatched, one less thing to worry about!

Bending down to hold the hand of a kid who tries to beeline for the street hurts our backs so I found this handy device that saves our backs and also gives him more autonomy.

Still sleeping in weird positions...


 

Comments

  1. UnknownSeptember 12, 2021 at 1:36 PM

    Hey there. I'm so sorry that things didn't go well as expected but I was so amazed at how courageous and optimistic you have always been. I hate to comfort someone and say everything will be fine when in reality I don't know honestly if everything will really be fine. But in your case, I have full full faith in you and I truly believe in one way or another you will get through this. Please hang in there! I just moved in to Boston last month as my grad school switched to in-person classes for this fall semester. I'm very sad that I didn't get to say goodbye to you before I left AA as I wasn't really in good shape as well at the time. I hope when I visit Michigan at some point in the next month or two, I could go visit you or at least say hi to you. Take care! And I sincerely hope you feel better very soon! Zaiyi

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