Weekly Update #51

Gosh, it has been such a whirlwind week.

Last Tuesday and Wednesday and I traveled to DC to speak at a symposium for leaders of healthcare systems in transformation. The work of the attendees and their panels were so inspiring – people who are using housing to improve healthcare, connecting the formerly incarcerated to healthcare, improving healthcare equity. My panel was on patients sharing their experiences and why healthcare systems should listen to us. It seemed incredibly well-received and I was pleased with what I was able to communicate.

The downside of this symposium was the dinner on Tuesday night. The speech was by a journalist and doctor about some case studies of hospitals handling crises on the scale of hurricanes. Some of these hospitals handled it well, and others really didn’t. It was excruciating to sit there and listen to a description of how doctors debated about whether to euthanize patients and ultimately did so. I was the only patient in the room, the only person who was picturing themselves unconscious in a hospital bed with a team deciding whether they should try to save or end your life. I was really disappointed in myself that I didn’t leave like I wanted to, that I prioritized not making a scene over taking care of myself. I was able to see the social worker at my cancer clinic later that week and we had a really good talk. She asked me what I would have done if my daughter was next to me uncomfortable like I was, and without a doubt I know I would have left that room, I have left other rooms to make her feel safe and I don’t care what anyone thinks about it. It was a real breakthrough to imagine doing that for myself, and when I am inevitably in another uncomfortable situation I feel more empowered to do what’s right for me.

On Sunday I had the silent retreat day of my meditation course. We alternated guided meditations and time on our own to have our own journey. I walked away with a greater appreciation for valuing the now over what I wish would be. It was easier than I imagined and than the instructor had warned us it might be. I spend a lot of time home alone in silence and I think that has served to prepare me for that aspect of the day. I am inspired to devote some days to silent meditation in the future.

Finally, my daughter celebrated her birthday last week. I have an 8 year old! It was a big week for her with birthday and Halloween and time change. We’re keeping things low-key this week while we all catch our breath.

Weekly Update #50

This past chemo was a rougher one. Many chemotherapy regimens have a cumulative effect and nearly a year on Irinotecan, one of my current drugs, seems to be catching up to me. During the infusion I had more side effects hit and as I described them to my doctor she said it was like I was checking off a list of the common reactions. I have one more dose before my next scan, after that we’ll talk about whether to make any changes – it’s possible to lower my dose or get that drug less frequently.

That said, even though chemo took me out last week, three days later I was able to run 4 miles. I am going to train for the half-marathon distance at the Austin Marathon in February. I don’t like to commit to things that I don’t know I can finish, so it is a stretch for me to announce that I am training, knowing that I may not be able to run the race. I am going to do what is in my power to get me to that starting line, and hope that I am not sidelined by factors beyond my control.

This week I am heading to a small symposium of healthcare systems undergoing transformation. I will be speaking on a panel about my work as a patient advocate and why it is so important for serving your target community. I sometimes feel weird in the run-up to these events when participants are trading bios and most are there due to their multiple degrees and years of work, whereas I am in the room because I got sick and I talk about it. But I have earned my expertise as a patient and really do enjoy sharing why our voices are so important. I’ll share how it went next week!

Weekly Update #49

October is always a super busy time in my household. All three of us have birthdays this month, and I have an annual work trip, too. It is one of my favorite times of the year, filled with fun activities, but it is definitely hectic.

I got home earlier this week from the aforementioned work trip. It is an opportunity to see in person friends I generally only keep up with on the internet. And I get to see sheep and goats and yarn and beautiful handmade clothes. I love being there, and it is always a particular bummer to get treatment the week after. For a weekend I forget I have cancer, and it is a rude reawakening to find myself back in the chemo chair.

Last time I talked about about being able to come off a medication I had been taking preventatively to prevent rash from my chemo. That rash showed up this week, so clearly the medication had been effective. I’m getting back on it and looking forward to the improvement.

I met with my team today and things are continuing to go well. We’ve reached a kind of autopilot and that’s everyone’s goal for my treatment. I have one more and then a PET scan, my least favorite because for prep I have to avoid all sugars/starches for 24 hours. If that looks stable then we’re talking about spreading out my scans to every 3 months. I’ll happily take a little more time between scans!

Running and meditation are both going really well. I managed a 3 mile run last week and am going to try for 4 this weekend. I’m hoping I can train for the Austin Marathon this February and run the half-marathon distance. In meditation class we are getting to some big stuff that is really challenging how I handle difficult feelings. I am loving how it feels when I put it into practice and am working on recognizing when it’s time to call on those skills.

Weekly Update #48

Port replacement was no fun and I am glad that it is over. I am allergic to the most common skin cleanser for surgical procedures, and they elected to use it anyway and give me a big dose of benadryl. I was itchy all that day and the rash is still fading. The doctor told me to avoid all activities that produce sweat for a week, as well as not lifting my elbow above my shoulder on the port side. I got sore today shelving books in the library at my daughter’s school – just pushing the other books aside to make room was obviously irritating to the affected side. After the procedure the doctor told me that mine was the deepest port he has seen in over 1,000 procedures. That sure explains why it was so hard to access!

My birthday was this weekend, my fifth since my diagnosis. Each birthday I get to celebrate is a big deal, and I find I want to celebrate them quietly. My daughter planned a day of celebration for me, and it was delightful to follow her lovingly crafted plan. Rest and snuggling and family play was exactly how I dreamed of spending the day.

I have come off a medication I was originally put on when I started my new treatment, as it is supposed to help with the skin side effects. I was nervous about it, but my skin seems to be handling it fine. A big positive is that it is now easier to take all the vitamins I need to be taking – they have to be timed a certain number of hours away from that medicine and it was tough to fit them all in a day. I have been needing infusions of a couple vitamins during chemo because my levels have been low – I am hoping that taking the supplements more regularly means I can avoid that and shorten my infusion visits.

This week I get back to chemo. I am never excited to get chemo, but one positive side effect is that the steroids I get to help manage the associated nausea also help with my pain. The pain flares up pretty predictably when I have an extra week off of treatment. Getting back to my biweekly schedule will hopefully keep it at bay again. Now I’m off to knock out all the errands that need my attention before chemo takes me offline for a couple days.

Weekly Update #47

Last week was a rotten allergy week for me – I was congested and my throat hurt and I was worn down. And I had a hard time with that. Allergies seem like not that big a deal compared to the rest of my health history, so in my mind it seems like I should be able to blow right through them. Being slowed down by mucus was frustrating and humbling. It’s amazing how hard it is to listen to your body over your brain.

My port replacement procedure is scheduled for later this week. I am looking forward to getting that finished and moving on with port number three. Makes me very glad I don’t have treatment this week so I don’t have to get it through an IV again. It’s not comfortable to hold your arm straight for 4 hours. My next treatment I am looking forward to my regular chemo nurse being able to access my port without having to call in reinforcements.

I am looking forward to an extra week off from treatment this week. I am hoping to knock out some sewing and indulge in some reading. I have stacks of fabric and books waiting for some love, and this week I should have a chance to indulge.

Weekly Update #46

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.

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.