I missed my first update last week. I took a break from most electronics over the Thanksgiving break.
I still have not started my new chemo regimen. Twice I have gone into the clinic only to find out that it is not yet authorized and I have to wait for the insurance dance. It is incredibly frustrating to keep waiting. This new regimen feels like a wave that is about to crash over me, and I want to get out of its shadow and get it over with. I want to know how destructive it’s going to be, so I can plan how I’m going to deal with it.
It’s also stressing me out about my schedule. My dad is coming to help out next week, and I would really like to be getting treatment then. I currently have doses 2-4 scheduled in a way that works for my family, and I need dose 1 to happen next week to keep that schedule. I have never had issues with insurance denying treatments so I’m not worried about that, just tired of waiting for the process to run its course.
I have another thing that I cannot get off my mind. Since April I have been on an advisory board for a new clinic being created here, the Livestrong Cancer Institute. Their goal is to treat cancer in a whole new way, very patient centered and including social and emotional issues in their care. It is a thrilling project to be involved in and I’ve found it incredibly fulfilling. What is stressing me out is that they’ve invited me to be patient zero. They’re starting with GI cancer and an adolescent/young adult focus, so I am exactly their target audience. I would really love to give up the travel to Houston – it would be so great to have my husband be able to attend some appointments with me, have surgeries locally and have friends visit me, remove disruption from our lives from me being gone so often. And the care at the new cancer sounds so comforting. But . . . it means giving up the care team I’ve built up that I love. My new oncologist at MD Anderson makes me feel so safe and happy. I know the name of every person I interact with at my local oncologist – from the phlebotomists to the schedulers. Can a start up environment provide the level of care I need? I can’t commit myself to worse care. I keep making up my mind not to switch, and then I go to help out at Livestrong and I don’t feel able to let the question go. In a few weeks I’m going to go act as myself in a mock operations day, pretend to be a patient considering switching to Livestrong. I am hoping that being in the space, with the team, and acting it out will feel clarifying. Either I’ll feel at home or I’ll know that it’s not time to switch yet.
In good news, the song I have been working on in a pilot program is done and it’s incredible. As soon as it’s up on Soundcloud I’ll put up a link!
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.
It’s my last chemo before my next set of scans. Usually by this time I feel nutty and short-tempered and worried, but it’s not really getting to me this time. I think part of it is that I’ve been so busy that it feels like they snuck up on me. I often have an off week between chemo and my scans, so this time I’m distracted by treatment. But I also have a piece of information I don’t usually have; we’ve been tracking my blood marker at home. It’s not a direct measure of my cancer, but it is related and has been accurate for me in the past. I’ve been able to see that instead of climbing, this marker number is falling. It’s making it easier to believe that these scans will go well. For me the goal is: no new cancer and existing cancer is stable or smaller.
The nausea has been a little better this time around. I’ve been able to hydrate more and stay awake and accomplish some tasks. I don’t feel like I can really take credit for it, it seems like it just happens some weeks and not others.
I already have my next chemo scheduled for the week after and it is a bummer. It has only been 4 doses this fall but I am already ready for a break. I know I can take one whenever I want, but I would like to hold out for when I need one, not just when I am feeling grumpy about feeling bad.
We scheduled ourselves a whirlwind fall and this past week was the middle of it. I started out feeling out of sorts after the day I referenced last week where I slept for 20 out of 24 hours. Immediately following that I got insomnia in addition to my regularly scheduled nausea. It felt like a different life than the week before being with some of the most important people in my life in one of my favorite places.
I’m always hungry during chemo because nausea prevents me from eating to satiety, and as soon as I’m able my body wants to make up for the missed calories. This week that desire to catch up never went away and I felt like a hunger monster. This cycle is one of the things I find so dizzying about biweekly chemo – my appetite always feeling like a reaction out of my control. My tongue is feeling more numb and my sense of taste is more affected by chemo lately so I find myself craving the big flavors of grease and salt and spice and sugar to compensate. I’d like to try approaching my nutrition more mindfully next cycle to see if it helps reduce the gustatory rollercoaster.
There are not a lot of cancer perks, but today was full of them. In the morning I was on a panel at a local high school, speaking to students interested in health care careers. I really enjoyed sharing my story. The kids asked me a lot of follow up questions about what it’s like, and I was glad to be able to honestly answer them. I made some great connections with my fellow panel members and left with invites to visit a colorectal cancer lab and to get in the loop for more opportunities to share my story. I went straight from there to a follow up session for my cancer song. We finally have the structure and lyrics settled. I recorded my vocal part in the chorus and was surprised by how much I liked my playback. I finished the day so grateful to have the time to pursue these kinds of opportunities. I already feel secure in my legacy and this is a rewarding addition to it.