I’m not going to bury the lede here – my scan results came in last week and they were good! Yet again my tumors are stable or smaller in size and there’s no new cancer. I get to stay on this regimen that is working for my cancer and my life until our next reevaluation around Thanksgiving.

Yet again getting the results was such a starkly positive contrast to my previous experiences. My doctor said she could see that I was stressed when she walked in the room and could call me with scan results as soon as they have them. I decided to stick with what we do now, which is meet right after the big team of lots of specialists chats about my case. I’d rather know the results and the plan at once. I really appreciated that they want to minimize scanxiety as much as possible, though. My doctor also noticed that I was scheduled to get my next treatment the week before my birthday and offered to push it out a week. Those little details are the things that make me feel so taken care of as a patient.

The less fun news is a follow-up to my port. I had a dye study done and it confirmed what we suspected – the port is broken and will need to be replaced. I’m waiting on that procedure to be scheduled and am glad to have that extra week before we need to use it at my next chemo. I am also a little bummed about the port replacement because it means I can’t come off my blood thinner shots yet – I had gotten the go-ahead but now I have to wait until after the replacement to switch to an oral blood thinner. Soon my poor stomach will be free of bruises.

I’ve started my meditation course and as I feared/expected, it is going to be intense for me. I am doing the course because I want to confront the intense feelings I so deftly ignore, but looking hard stuff in the face is tough. My teacher and I talked about it in advance and I’m prepared for lots of self-care to get me through it, and using the skills I already have of knowing what is and isn’t safe for me to confront at any given point.

Now that the school year has started I am putting a lot of my extra energy into my daughter’s school and I am really enjoying it. I’m volunteering at the library a couple times a week and am going to do some tasks for her teacher when she needs an extra hand. Being sick means I cannot always show up for my daughter in the ways she wants, and it feels like the time at her school is helping her feel better about me being there when I can.

I’m back at the updates and my chemo – I write this from my infusion suite recliner. It is turning out to be kind of a bummer here. My port isn’t functioning correctly, so I have to get today’s infusion via an IV in my arm. Not super comfy for 4 hours. And also I will need to follow up and do a dye test to see if the port is broken like we suspect. If so, that means removing and replacing it. The silver lining is that this port has caused problems almost the entire two years I have had it, so maybe a new one would work better.

Last week I got to take a week off from chemo and visit Scotland to see friends get married. It was incredible to get to go on a trip like that. When we booked it we didn’t know what kind of shape I would be in when travel came, and it was a delight that my energy levels weren’t the limiting factor in our adventures. I was bummed, though, on day 6 when I was really tired out. We walked up about 13 flights of stairs and my husband and daughter were find by the end, while I was worried that I might throw up or have an unhealthy heart rhythm. And later that day we had to run for a bus and I simply couldn’t do it. I was really upset in the moment – it felt like a punch in the kidney reminding me that I have been working out and am feeling better, but I am still a sick, disabled person. I can look at the evidence and see that we were incredibly active the whole trip and I did things I couldn’t have done 6 months ago, but I still feel the disappointment in my heart. I was lucky that the next day was our train ride from Scotland to England. Looking at the sea out one window and fields of sheep out the other filled up my soul so much.

Friday was scan day for me. I am still so appreciating how much easier to have them in town. It was just a part of my day and I felt much less stressed about it than the ones at MD Anderson. The tech really went out of her way to make it so I didn’t have to go get a second needle stick for my blood work that day. I have heard that my blood marker numbers look good, and I’ll get the official scan results and plan for the next couple months on Thursday.

Now it’s time for my benadryl-induced nap. I’m hoping all the sleeping I’ll do the next few days will help me get over the last of my jet lag.

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.

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.

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.

It has already been a remarkably productive week for me already by the time I’m writing this at midday on Tuesday. I’ve needed less rest time this week and have been able to knock out a bunch of really satisfying little tasks. It feels like energy like this only pops up right before treatment (I go in for chemo tomorrow) and it always makes me mourn the things I could be getting done if I were healthy. And every time I feel torn because I am working on accepting that my value doesn’t come from my productivity, but also I like getting things done because it feels good to accomplish things. I don’t know how to reconcile those ideas or if they are reconcilable?

This week is my last one with my personal trainer. It has been awesome, and has really helped me feel ready to be in charge of my workouts. I used to be a runner and have really been missing it, so I’m getting back to that. Today I went out for 30 minutes doing run/walk intervals and it was literally nauseatingly hard. But it was also amazing that my body can still run. I can breathe deep and use so many muscles and push myself for half an hour. Earlier this year I found it challenging to stand for that long. Yesterday I went to a great yoga class and focused on connecting with my body, something I find increasingly hard as I spend more time as a patient. It’s really thrilling to be able to work my body and I want to take advantage of this opportunity as much as I can.

I have taken enough doses of this new regimen that I have a pretty good idea of the range of side effects. Right now as I am going into treatment (cycle days 12 and 13) my skin gets really dry. The skin on my eyelids often flakes off, and I get areas of redness and sensitivity on the tops of my cheeks that look like I got too much sun. My neck gets the ugliest rash – it’s red and feels scaly and is spread in slashes up and down. The tips of my fingers flake off and feel extra sensitive. My heels crack and bleed. If I have to remove a bandage in this time period I’ll get a skin reaction. After I get my treatment I will be nauseous and tired. On day 3 the gas will hit and be uncomfortable for several days; this is also when my skin will clear up. Days 7-11 are the only ones without any noticeable side effects. It’s helpful for me to have these written down, and maybe they’ll be helpful for someone else on the same regimen – Irinotecan and Cetuximab (aka Erbitux).

Not really looking forward to the worst-feeling days of the cycle, but am glad for the opportunity to kill some more cancer.

The high of good scan news are waning and I’m settling back in to the daily work of fighting cancer. Going to my appointments, monitoring the things that I’m at risk for, the boring stuff that makes cancer a job.

Today I spoke on a panel for a group of high school girls who are interested in health care careers. Two other survivors and I talked about our experiences and answered all of their questions. I really enjoy these experiences – I like telling my story and I like the way it helps future clinicians learn about what life is really like for a patient. Even though it’s rewarding, these events are draining. Inevitably people want to hear about the hardest parts, want you to relive the most intensely emotional moments. It’s a performance I have to put on and then recover from.

I am testing out a new medical device. I have a number of complaints about the one I normally use, but it was so hard to find one that worked at all that I stuck with it for more than a year once I found something that met the minimum requirements. With my recently increased energy I’ve decided to see if I can do better. It’s scary because the consequences of the device failing really suck, and also amazing because the model I am testing is a ton more comfortable that what I currently use.

That wraps up this week’s news. Hope you’re all having an excellent summer!

Last week started out tough, with having to wait for my scan results, but ended on such a high after getting great news. I noticed that it was really different for me to share the news digitally versus in person. I sincerely appreciated the outpouring of love here and on Instagram, but I felt pretty overwhelmed and numb in those conversations. I was able to see a number of friends this weekend and sharing with them face to face was much more emotional. It helped that time had passed and I was more able to process the information.

I am six weeks into working out with my trainer and I am noticing the effects more in daily life. It is easier to get up off the ground without using my hands – it used to be a struggle for my leg muscles but they’re clearly stronger now. I also notice it in my posture, which tends to be terrible. I am noticing my positioning more often and able to improve it for longer periods of time. These are the sorts of things that will make a difference for me in maintaining independence and mobility as long/much as possible so I’m really pleased to see these kinds of results.

I talked a big game about writing my morning pages last week, but as soon as the stress and fear surrounding my scan hit I stopped them and haven’t restarted. In those times of overwhelm I find myself frozen, and I avoid the kind of self-care that could help ease things. It feels too hard to feel any of those feelings so I try to feel nothing at all. It’s a habit I’m slowly trying to address and I am looking into taking a meditation course this fall that is specifically about these skills.

I’m ready to get back to my treatment this week and keep destroying more of this cancer.