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.

Weekly Update #52

Last week I had a PET scan and the results were good! The tumors in my lungs continue to be stable or smaller. I am so pleased that we’re still seeing a response to this current therapy regimen. There was a small bit of progression on one rib, and a suspected new area on my spine, so I will do a follow up MRI to assess those and probably do another round of radiation in a few weeks. I tolerate radiation really well, and they’re short course for this sort of thing, so I’m not too bothered by adding that on for a bit.

My doctors really worked hard to get me results on my scan day which was really wonderful. I had brought a book to pass the time between appointments and had just settled down in a quiet spot when someone else sat down nearby and started watching news footage of a school shooting without headphones. It was more stress than my body could bear at the moment, so I went to the front desk and asked if they could put me in a room early. It was a little thing for them, but made such a difference in my experience to spend the next two hours in a quiet, relaxing space rather than gritting my teeth. My husband was able to join me while we waited for results and it was fun to pass the time playing pictionary with him.

One of the reasons I’m so relieved about this good scan is it means we keep on my same regimen for the next two months. I will be on known, predictable treatment through the holidays. Last year I had a scan on the same day, actually, and moved to a new regimen. That one was incredibly hard on me – we had to reduce my dose because of how poorly I tolerated it and I was pretty miserable through my daughter’s winter break. I remember how sad I was thinking that Christmas might only be downhill from here, and instead this year I am on track to feel even better. I am so grateful for the gift of quality time with my family.

I also get to keep up my half-marathon training! Yesterday I did 6.5 miles and the long runs are continuing to feel great. I’m going to ask at my young adult advisory board is anyone else is planning on running the race, as I think it would be fun to set up a team so we can have matching bibs.

Chemo continues on schedule for this week, so I am off to get some more fun things done in the part of the week where I feel better!

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.