Weekly Update #89

I know I have worried a lot of folks with my long radio silence. I’m here, I have just been having a rough time lately.

Before I get into that, I want to mention that I was interviewed for a podcast called Grief Is A Sneaky Bitch and the episode came out this week! I talk about the pre-grieving I am doing, knowing I am chronically ill and death is on my horizon, and the host, Lisa Keefauver is an amazing expert on grief. Here’s a link to my episode, I think you will really like it.

So, as I opened with, I have been having a hard time recently. I wasn’t ready to talk about it last time I posted, but when I had a CT scan just before starting the trial, it showed that there’s some activity in my pelvis. There’s a mass that involves my original tumor site and my cervix that they can’t tell from the pictures whether it’s a recurrence at my original site (most likely) or new cervical cancer (unlikely). The mass is squishing one of my ureters, the tube between your kidney and your bladder, so we’re keeping an eye on it and some point we’ll need to have a stent placed to make sure my ureter can keep on draining.

This news was really scary to hear. I haven’t been able to share it with almost anyone, it just feels so awful. Since reading that radiology report, I have noticed discomfort in my pelvis and it has gotten into my head that I am feeling my body rot away. I recognize that only having these sensations after reading about the mass indicates that maybe my anxiety brain is involved in the feelings, but that doesn’t remove the fear it brings to my body.

Along with this, my appetite has plummeted again. I’ve lost more weight and am about to start some meds to stimulate my appetite and prevent me from feeling full so quickly. My nutrition situation is so bad, I’m starting to get winded just walking around the house because I don’t have the energy to support myself and I’ve been losing muscle mass. So I’m trying to do just 10 minutes of walking outdoors each day and my nutritionist and I brainstormed a few options to increase my intake. I feel embarrassed that I can’t solve this problem that has been ongoing since July, and my nutritionist always makes me feel better by reminding me that I really am trying my hardest. Unintentional weight loss has never been an issue for me in my life, but man is it hard to force yourself to eat when food is unappetizing.

I’m sure not eating enough is contributing to my mood, which has been low lately, too. I feel like that is finally improving. I have the energy today to write this post. And I can imagine replying to an email or two (so sorry if you’re waiting in my inbox). My mood is still precarious, but Biden winning the election is definitely helping to tilt everything towards more manageable right now.

Next week I head back to MD Anderson for my second dose of my trial med. It should all go smoothly now that I know what to expect. I’ll miss my family for a week, but it will be the last full week I’ll need to be away for the trial. And truly, it is very joyful to get to spend time with my friend and her family while I’m there.

My joy for this past week is that Joe Biden won the election. When I saw the results and felt hope, I realized what an unfamiliar sensation it is in my body and frankly I didn’t like it. But I’ve experienced it more and more this week and it is starting to feel really good. I am excited for his presidency to begin and for us to undo the mess caused by the Trump administration. And also to watch Trump et al. go to jail. I’m excited about that, too.

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