Weekly Update #55

When I had my last scan in November, one of the things I was most pleased about was getting to stay on the same regimen and knowing my schedule for the holidays. It has been just as lovely as I hoped for. My daughter has been off school and my husband off work almost the entire time since my last treatment. We had a slow, quiet Christmas and have been enjoying leisurely days of video games and movies and walks around the neighborhood.

I seem to be emerging from the funk I was in last time I wrote. I got through my anniversaries just fine and am appreciating feeling well this year. The other tough thing was that last week my husband had his first colonoscopy. Everything turned out fine, but it was anxiety-provoking for me. My brain was convinced that 100% of the time people in our families get colonoscopies we wake up to find out we have cancer. It brought up the confusion and grief of the day of my diagnosis, and filled me with fear at how we would handle getting my husband through it as well. I’m glad he got a good report and that we don’t have to go through it again for 5 years.

This past weekend was an 11 mile training run and it went well. I was very nervous about my last one was so painful. I have to admit that if I weren’t already signed up for my race, and I hadn’t bragged about it so widely, I probably would not run it. I can run 11 miles, but I am not enjoying it the way I used to enjoy distance running. I am very slow now and the long run takes up so much of my day – that run was over 3 hours, plus the recovery afterwards and the nap I end up needing, it is really time-consuming. I am going to see this training cycle through, and then I will figure out if I want to keep running as my primary exercise focus or move onto something else.

My pain levels are rising again. We know that the cancer in part of my ribs grew a bit on my last scan, but it is not a surprise. Eventually we will do radiation for it. I’m not sure how we know when it’s time to do so, but I trust that my team will help me evaluate that. I’ve moved from not taking pain meds at all to taking them occasionally and my sleeping positions have become limited again, only a couple keeping the pain low enough not to distract me from sleep.

I want to close with a bit of reflection on the year. It was my first year with my only treatment being chemo – no surgery or radiation – 21 doses of it. The first part of the year was incredibly humbling, my treatment was really hard on me and I found myself needing a mobility aid to be out in the world. In May I changed cancer centers and treatments and both were life-altering. I am so pleased with the care I receive and feel so fortunate to have my team. And I feel the best I have in a long time. I have been able to exercise again and increase my bone density to normal after two years of being osteopenic (the first step towards osteoporosis). I also was able to participate in some amazing advocacy – speaking at SXSW and a conference, being featured in the year-end appeals for the LIVESTRONG Foundation and Wonders and Worries, the work I continue to do with my home center, building their programming.

Last year I was so scared to create goals for myself, unsure how I would ever have reliable energy to complete them. Right now I know that my abilities may change this year, but I am less afraid to attempt challenges and have to adjust my expectations along the way. This year I want to continue to work on my fitness and my meditation, as well as focusing on the kind of self-care that is moisturizing and drinking enough water and eating foods that make my body feel good and seeing my friends. Let’s go, 2020.

Weekly Update #54

Last time I talked about going off an antibiotic I was taking to manage the rash that is common on my regimen. The rash has shown up big time, but in a weird presentation I have it in my armpit spreading down to the side of my breast and ribs. It doesn’t hurt or itch, luckily, but if it were on my face I probably would go back on the antibiotic because it truly is unsightly.

Have I mentioned the most surprising side effect of this treatment? My eyelashes are incredibly long now. The top ones look like I am wearing fake lashes and the bottom ones are long and curly. I have to comb them daily to keep them out of my eyes.

My energy and my mood have been low the past few weeks. Last week was the anniversary of my hardest chemo ever, the closest I have ever been to being hospitalized by treatment, and my body responded with an echo of those awful symptoms last week. And two years ago I was suffering from my most heinous side effect, one that I still find unspeakable here, and days away from the surgery that traded that agony for a less terrible quality of life reduction. I remember so clearly from last year how awful I felt, and wondering if each subsequent Christmas for the rest of my life would be worse. I suspect that these anniversaries are the cause for my current blahs, and as I write about it I am remembering the meditation course I just finished and how I can help myself with those tools. I had hoped that the course would make that connection automatic, but it takes longer than eight weeks to stop your brain from jumping to the habits you developed trying to protect yourself.

I also had my first bad long run this weekend. It was supposed to be 9.5 miles and about 7.5 miles in my heart rate felt super high. I incorporated more walking, finally giving up on running entirely, and was unable to bring it down. I had to call my husband to pick me up just .3 miles from the end of my route. It was so disappointing to get so close, but my vision was starting to go black at the edges when he got there so it was clearly the right call. I’m not entirely sure what went wrong, I know that sometimes you just have a bad run, so I have some ideas to try for next time but am hopeful it was just a fluke.

This week is my last chemo for the year! I am ready to get it out of the way and then feel good for the Christmas and New Year’s holidays with my family!

Weekly Update #53

Last time I talked about how my PET scan showed that I had a possible new bit of cancer in my spine that we were going to follow up on. I had that follow up scan last week and found out it was a false alarm. Yay! I still need to chat with my team about what we’ll do about my ribs – there was a tiny bit of growth there and I am experiencing more discomfort. Does it make sense to do radiation now or put it off? I’m okay with either decision.

I take some vitamins and supplements prescribed by my team to help with some deficiencies I tend to get from my chemo. I’m pretty laissez-faire about them, figuring that they’re not essential like some of my other meds. Last pre-chemo bloodwork showed that I was low again and I needed supplementing, though, so I have been trying to get back on track. One thing that made it tough was I was also taking an antibiotic that cannot be taken within 2 hours of the vitamins. With that being twice a day as well as the vitamins and some of them needing to be taken with food, it was a lot to coordinate. I’m trying out not taking the antibiotic – it’s to manage the rash that’s common with this chemo, which is not pretty but causes no harm. Tomorrow I go in for bloodwork before this next chemo, fingers crossed my supplementing works.

Thanksgiving was lovely for my family. We had a week off together, spent relaxing and playing. On the holiday itself we got together with friends and ate very well. I’m so happy that the timing worked out that I could feel so good during this time. I’m on track to have the week of Christmas off as well, which I am really looking forward to.

Half-marathon training is still going well. I hit 8 miles yesterday, a distance that sounded very scary even as I set out on it, but that I totally nailed. And on the three runs previous to that I set new mile PRs on each one (for this phase of my running life). I’m down by 2:15 from when I started running again three months ago. It’s really motivating to see this kind of progress! I’m pondering adding another half-marathon into my schedule – there’s one in town a month before the one I’m training for, and it fits perfectly with my training schedule for that day. I’m torn between thinking it’s silly to pay for a race for a run I could do for free and enjoying the celebration while I have the chance. Thoughts?

I’m never excited excited to do chemo, but it feels weird to have gone two weeks without seeing my team, so I am ready to go see them this week and get my infusion.