Weekly Post #70

As often happens, I missed updating in the middle of my chemo cycle. This one wasn’t too bad, no nausea and the fatigue didn’t hit hard until relatively late. Unfortunately it was still a pretty unpleasant two weeks.

The pain I wrote about last time only got to not-needing-constant-pain-meds level within the last day or two. I don’t know why it got so very bad or was so hard to recover from, so no lessons learned to take forward. I have been doing exercise that focuses a lot on alignment and using muscles for what they’re supposed to be used for, I am hoping that long-term that will prove to be useful in pain management. One of the hardest parts of the pain is that it is ramped up by my knitting. I really really miss it. Knitting makes me feel relaxed and creative and allows me to make clothing I love and not having that outlet right now is sad.

I upset my stomach on Thursday night and spent the entire long weekend trying to recover – mostly by laying limply and staring at screens. I’ve watched so much TV this month and have been grateful for the escape.

One of the things that has been interesting about the pandemic is seeing the world go through some experiences I have had as a result of cancer. The current feeling seems to be that we’re all done with this and yet it’s not over yet. I have hit that wall plenty of times in treatment, of just wanting to step off the ride for a minute and have some normal time. But you can’t, it’s not an option, and you have to find a way to bear it. My family of introverts spent a lot of time this weekend in separate rooms; I think we all needed to meet only our own needs and not deal with another human for a little while.

This week is a couple telehealth visits and recuperating from chemo. Next week I have my PET scan (ugh) on Monday and get my results on Thursday. Last time we talked there was a chance I would move to a trial at MD Anderson after this scan. I’m curious to hear what my doctors think of that risk right now, and what the plan will be. I wonder whether the trial runners would be open to giving me a slot here so I didn’t have to expose myself to travel to participate. We’ll see what I hear next week. Hope you’re well, readers.

Weekly Update #15

Finally I have started my new chemo regimen. I am so glad to have to underway, and am pleased that it is much less difficult than I feared. My previous regimen is considered to be fairly light, as chemo goes, so I don’t get any meds to tackle side effects as a matter of course; I have them on hand to take as needed. This one is known to be harder so I get pre-meds before the infusion starts, as well as a morning and evening anti-nausea drug. I’m doing a lot of sleeping and my appetite is low, but I am not feeling any nausea and I can be awake for a few hours.

My dad is here to help out this week and that has been incredibly helpful. He’s taking my daughter to and from school, cooking and cleaning up, running bedtime. My whole job is to take care of myself. It’s a real relief to be able to offload such a huge amount of work to someone else. It makes me think about the offers for help that I don’t take people up on. One reason is that childcare is where we could use the biggest help and my gal has a small circle of places she feels comfortable. The other is that it feels like a lot of work to organize help. Having a trusted family member come in and take over mitigates both those issues.

I asked a whole ago what you thought about hearing interviews from some of people in my life because, but I haven’t yet worked up the nerve yet to ask any of them. I’m still hoping that I do!

Finally, the link to my song is up! Ta-da! A couple neat details about it – the piano you hear is played by my daughter, and the line “I can bear the wait/weight” has my voice singing along with the professional. This song is so much more special and amazing than I dreamed and I am excited that now comes the sharing part.

Weekly Update #13

Hello! This week was scan week so I come to you with updates.

Unfortunately, I did not see the results I hoped for. There was a bit of new cancer – a new spot in my lungs and a new spot on a rib – as well as growth of an existing spot. So next up we add a drug to my chemo regimen and do some radiation for the rib spot. The hope is that this will get me stable again and in 2 months I go back to maintenance.

I love my new doctor so much. I felt panicked when I first heard that there were new spots, but she did a great job of putting it into perspective. This is an incredibly small amount of disease progression for 9 months of maintenance chemo off and on. She doesn’t want to go in guns blazing forever, just knock this back and then let up. I feel like she cares so much about me and my quality of life.

That is not to say that I am psyched about these results. My blood marker was dropping and I felt so good going into this scan – it’s really frustrating that the information was inaccurate. And knowing that I do this heavier chemo and back to maintenance somehow clicked for me that, right, this is my life for the forseeable future. This isn’t even a marathon, because while they feel long they do eventually end and you get to rest. I’m not sure how long I’ll be able to keep up my spirits knowing that there’s no recovery period coming. My mental health plan is to keep taking it one day at a time and take opportunities to fill myself up when they arise.

I mentioned a few weeks ago that I had made a connection to visit a local colorectal cancer research lab. This week I joined the lab for their Thanksgiving potluck and then toured the facility. I used to be a biologist, so I loved getting to hear about their research and seeing where it happens. The lab leader is an oncologist and while she’s not officially my doctor, she wants to keep in touch about my treatment. I feel really fortunate to have this connection.

I’ll end by saying that I spent the afternoon helping a friend in need. I had planned on relaxing after this hectic week, but instead I showed up when a friend was hurting and I could help. And it felt really good. It’s so true that helping others is a great way to pick yourself up.