Weekly Update #43

My days have been full since school started last week. I’m spending a lot of time on self-care things: exercise, cooking, journaling my morning pages, meditation. I feel so incredible and am happy this is where a big chunk of my time is going lately. I’m also adding in some volunteering at my daughter’s school, catching up with friends, and taking on more around the house.

I had forgotten how different a kind of tired it is to be worn out from being busy, as compared to from being sick. Busy-tired has a kind of invigoration to it because my brain is always buzzing with the next thing to cross off the list. Sick-tired is much more physical, it’s weighing whether it’s worth it to get up to address your needs like thirst or hunger.

I was very excited to hear from my team that after an upcoming trip we can reevaluate my blood thinner shots. I’ve been doing them for 6 months and my belly and I are ready to be done. Lately I’ve been doing them next to my husband while he reads me a mini-mystery (like the grown-up version of Encyclopedia Brown). It’s an intimate moment in our day for him to make a painful task more pleasant and flex our brains together.

I’ve had this weird thing crop up this summer where about once a month in the morning I will go from feeling fine to ravenous to nauseous to throwing up in about 5 minutes. I mentioned it last time I saw my team and they asked if there was any way I was pregnant. My husband and I are both infertile thanks to medicine (him a vasectomy and me cancer treatment), but I took a pregnancy test just in case. It’s funny how you still kind of hope it’s positive, even when you very much do not want to be pregnant. It was negative, of course, so my symptoms remain a mystery. A lot of little things like that crop up and I always mention them all to my team because I don’t know what’s serious. It’s always a surprise to me what has an explanation (the bumps on my tongue) and what doesn’t (the numb section of my left butt cheek). At this point anything that doesn’t cause pain or impede my mobility I am happy to put up with.

Happy week to y’all. Tomorrow is chemo number 4 since my last scan, here’s hoping it’s another smooth one.

Weekly Update #42

It was nice to reflect a bit last week surrounding my cancer-versary. It has continued to be on my mind since because I’ve been able to continue ramping up my exercise to include regular running and heavy weightlifting. At the time I was diagnosed I was working out with a similar schedule, and I thought the tailbone pain I was feeling was due to overtraining. Once we found out it was actually from a tumor pressing on the area I pretty quickly lost the ability to exercise like I used to. It feels so good to be back in my running shoes and at the gym, progressing and getting stronger.

I’ve had to add an unexpected tool to my side effect-mitigating arsenal recently – superglue. One of my drugs dries out my skin a ton and I keep getting little cuts on my fingers that are really hard to heal. After watching one cut get larger and larger over a couple days I finally poured superglue on it and amazingly, it finally got better. It’s really important I not have open cuts due to infection risk, so I now have a tube of glue on my desk and I apply somewhere every couple of days. I’ve gotten very good at applying just 2 drops so it doesn’t spread all over my hand.

School started back up this week for my daughter and I am ready for us to hit our stride with our routine. The only worry I’m going to have to carry is whether I’ll finish my infusion on time to pick her up from school on chemo days. I have the earliest appointment available and it’s still tight whether I’ll make it to her school by 3pm. We generally know pretty early on in my infusion when I’ll be done, so at least I’ll have time to text friends to see if someone can hang with Marlowe for a few or even take her home if things are running really long.

Four Year Cancer-versary

Today marks four years since my cancer diagnosis. I was diagnosed in recovery from a colonoscopy. I remember waking up and asking my husband if we had any news and him saying we should wait for the doctor. I later found out that he had already heard the news, and I will be forever in awe of his strength in those moments between when he heard and when I did. I was still groggy when the doctor came in and explained that he’d found a tumor. My husband and I came home and watched one of the new seasons of Wet Hot American Summer, sweating because our AC wasn’t working. I kept getting phone calls from doctor’s offices to set up appointments. I didn’t know who they were or what the appointments were for or whether the order mattered. I was on the cancer assembly line at that point.

I have felt different ways on each anniversary. This year the overwhelming feeling is pride. Living four years with stage 4 colorectal cancer is a big deal. I’m still here, and my last scan showed things getting smaller. I am proud of what I have weathered. I like that I have chosen to respond by becoming softer and kinder. Cancer is so hard, but I think I handle it with grace.

I have not done this alone. I am grateful to my medical team and my non-medical community for their help and support getting through this journey. My family is incredible. They are going through cancer just as much as I am and they bring humor and love and empathy with us on each step. Thank you to everyone who is reading this for caring about me and my illness.

Weekly Update #41

As someone who has blood drawn fortnightly at a minimum, I appreciate that I have good veins and am an easy stick. Unfortunately, the same cannot be said for my port – due to a combination of weight gain and (bad) luck of positioning it is difficult to access. This past week it behaved particularly badly and had a clot in it that we had to wait to dissolve before I could start my infusion. The nurses gave me the choice to get my infusion sooner through my arm, but I get 4+ hours of meds, and that is a long time to be stuck with my arm straight. The nurse said that clots like these tend to crop up every 6-9 months and while I can’t find any evidence of it in the archives of this blog, I am pretty sure I had one about 9 months ago. So, hopefully I am all set until May of next year.

I’ve been thinking about compliance this week because I have been skipping some of my meds recently. Some because they’re unpleasant and some because they have a small window when I can take them and I haven’t put in the energy to remember. I am trying to do better this week; I know my doctors don’t put me on drugs for the fun of it. But I also have so much more compassion at this point for non-compliance than I did earlier on in this journey. I get how exhausting it is to always be tracking so you have your meds, to reinforce your sickness multiple times a day, to have to do painful procedures. I get how non-compliance comes from barriers rather than people not wanting to take care of themselves. I appreciate medical professionals that see non-compliance as a patient need that’s not being met rather than a personal failure.

It’s time over here for back to school and it has me itching to plan the family calendar. I have my daughter’s extracurriculars planned and wish I could feel as settled myself. At my new clinic I don’t plan my scans months in advance, we book them more like a couple weeks out. That flexibility is wonderful, but also means I don’t know what my chemo schedule looks like after the next couple infusions. Why do I need to know now if I’ll have chemo on October 9 or October 16? I don’t, but my whole body would feel more relaxed if I did. I’m also pondering changing the day of the week I get my infusion once school starts up and am (over)thinking the best day given our commitments. The last piece of the fall planning puzzle is I am torn about undertaking my own extracurricular activity. A survivor I met recently recommended a meditation class to me and I am tentatively enrolled to take a similar one. I like the idea of increasing my mindfulness tools, but am also terrified of delving into the pain that causes me to seek them out in the first place. The class is a serious commitment of time and energy and I am feeling nervous about the investment. Fingers crossed it all becomes a bit easier to decide over the coming weeks.