Weekly Post #72

This morning I met with the radiation oncologist to move along the process of getting me in her tube. Overall I’d rate it a booray. The boo part is that she wants to do a PET scan before we start radiation. Based on my CT scans my rib mets haven’t changed since she last radiated me 18 months ago, so the field she’d design would just hit everything. That’s not great and could cause damage to my lungs or ribs, which I definitely don’t want long-term. The PET scan will show where we should be targeting the radiation so we can be smarter about it. I’m glad that she took my pain seriously despite the fact that the scans indicate I should not be having pain like this. I am really sad that adding the scan means I would be lucky to start radiation late next week, it’ll probably be the week after, and my current QOL is not great so I am not excited to extend it.

One thing that stands out to me surrounding all the waiting I am currently doing is how much my attitude about it has changed. I have to wait on the PET scan to get insurance approval before it can happen, the new chemo we’re starting me on is stuck in insurance/copay tomfoolery as well. In the past I have raged about these things, calling insurance and my team daily about updates on the timelines ahead of me. It never actually speeds anything up and definitely makes me feel worse. Currently I am just waiting to be informed about when these things will be ready and honestly feel very little stress about it. Everyone is doing their job and eventually it will get done. I’m not sure if this change in strategy is due to the mindfulness work I have been doing lately or just experience but it feels nice to have part of this be easier.

Do people want to hear about pain? It is weird to build your life around it. Planning the timing of pills so you can sleep and using aids like tennis balls and ice packs just the right amount so they ease and don’t irritate. And a lot of naps. It’s weirdly easier to nap during the day than sleep at night.

My big source of joy in the past week is that I finished the quilt top I am making for my husband. It came out so beautiful and I feel so good to have gotten so far on the project. I’m still not even halfway done, I’d guess. The style of quilting my husband wants is quite intense. I want this to be an heirloom for him so I am truly happy to put in the time. But I am also planning to knock out a t-shirt for myself next as a little palette cleanser before I get back to the quilt. I also have been using a little inkle loom to do some weaving in the evenings in place of the knitting I usually do. It’s really nice to have a craft to do with my hands, even if I’m not sure what I’ll do with the resulting fabric ribbons.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s