Weekly Update #45

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.

Weekly Update #44

One of the things that is hard about continuous chemo is that even though I get the same treatment every 14 days, my body responds a little differently every time. I feel like I should be a professional at this regimen after 9 doses, but there are new challenges to address nearly every time. This round brought with it new levels of skin dryness – no matter what I did my entire face had the ghostly glow of dead skin sitting above the surface. My appendages have started to be hit, too, with little red patches on my arms and legs as well as continuing foot damage. I have been leaning hard on my lanolin creams and it seems to finally be getting better.

I am mildly allergic to both the cleanser they use to prep my skin for accessing my port and the adhesive they use to hold the port needle in place. I normally expose myself to the allergens rather than remembering to stop the nurse in time, but this time around my skin really reacted poorly. The nurse wrote it in big letters in my chart to avoid these next time and go with the supplies I’m not allergic to.

The other way this cycle was rough was overdoing the carbonated drinks. Plain water is tough to drink in the first couple of days post-treatment, so I mix it up with sparkling water. It was too much for my digestive system and I made myself sick. I felt so foolish for messing this up, I should have known that chemo makes my intestines more sensitive, I should have been able to drink more still water. I am trying to chalk it up as a lesson learned and be gentle with myself for not predicting this outcome.

We’re already talking about my next scan, which will hopefully be at the end of next week. Talking about scheduling the scan made me realize part of why exercising has been so important to me lately. When I work out I feel like cancer is not the entirety of my life. I have other things beyond it to focus my time and energy on. Putting a scan on the calendar feels like it reduces me to just a cancer patient. I am enjoying having cancer be a smaller part of my time and am going to work hard to maintain this balance.

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.

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.

Weekly Update #40

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.

Weekly Update #39

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!

Weekly Update #38

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.

Weekly Update #37

It’s been another couple weeks since I posted, and I learned last week that my blood markers dropped yet again. These blood markers tend to move with the amount of cancer in my body so in theory they indicate that my treatment is effective. I had the scan that will confirm how things are going earlier this morning, so now I am hydrating and eating and hoping for good news.

This is my first update scan not at MD Anderson in almost 3 years. As I hoped, I had much less anxiety leading up to the scan without it being part of a trip and feeling like an event. I get the results on Thursday, so I suspect that the anxiety is going to hit between now and then. But I get to be with my family while I await the results, which definitely helps to mitigate the worry. And I don’t have to get the results and then drive home 3 hours.

Last weekend I went away for a sewing retreat and sewed a pair of jeans. When I booked the trip I picked a place just blocks away, unsure if I’d have the energy to make it to the shop, let alone get through a weekend of sewing. It’s a surprisingly physical hobby with lots of standing, bending, reaching, carrying. It took me a week to recover, but I got through the class, and am so grateful to be on a regimen that allowed me to do so. I left feeling inspired to sew more and have quite the queue on tap now!

Overall I feel like I am settling into being in a place where I can do more planning and have more direction. We were just surviving for so long, and now I want to take advantage of the chance to live. I have gotten back to doing morning pages, which is an exercise from the book The Artist’s Way. Writing these pages has always led me to my truest direction, including my husband. I am still waiting to see what they will bring and am excited to be in a place to carry it out.

Weekly Update #36

Hello! I am feeling much better than last time I posted. It is feeling easier lately to focus on my own survivorship and not anyone else’s statistics.

I’ve gotten the dry skin variant of the rash my regimen can cause and it is tolerable but annoying. Multiple times a day I have something in my eye and it turns out to be a flake of my own skin. I haven’t found any moisturizers yet that last longer than a few hours and for part of the cycle my face is itchy. It has been worsening over my cycles so far; I’m hoping to find a stasis soon.

I heard last week that my blood markers are trending down, so my oncologist decided to do a fifth round of this chemo before my next scan. I don’t mind putting it off a couple weeks and enjoying feeling pretty good like I am now.

Sleep is the toughest symptom right now. I’m finding it really hard to get to sleep at a decent hour – part of it is me not going to bed and part is not falling asleep. This week I’m trying to make good choices in this arena and hoping I’ll feel so good I’ll want to keep it up.