Weekly Update #61

Finally! I have my new chemo, my Lonsurf and am day 9 of my cycle. It alongside the pain meds makes me very tired. I often take multiple naps a day, my running pace has dropped, I can’t fold more than a few loads of laundry without needing to take a break. Yesterday it was really bothering me to be in such bad shape. My husband came home from work and I could tell he was overwhelmed with the household tasks and I burst into tears out of guilt that I’ve spent the week laying on the couch staring at all that needs to be done but unable to work up the energy to do it. He’s not resentful, but I hate feeling like I make his life harder. He fell asleep just before bedtime and I was able to take that over and let him nap for a bit. It was such a relief to do this thing for him.

I followed up again with my doctor about the MD Anderson trial and it sounds like it’s going to be closed longer than we thought. It’s helpful to have that answer, though it increases the question of whether I’ll end up in that trial or not. For now I am okay with seeing how I respond to the new chemo and hoping that it is a good option for a while.

I also talked with my doctors last week about my increased pain. Even on pain meds nearly all the time my pain was often at a 4 or higher. They upped my doses which really helped, and I have been experimenting with using some steroids as well, the combo of which brings me down to a 0-2 most of the time.

Today I followed up on my new heart condition – atrial flutter. There is a new cardio-oncologist affiliated with my cancer center and I’m going to move all my care to him. For now I’m going to start on a medicine to both prevent the atrial flutter and also protect my heart from damage – my current chemo can damage your heart and the condition could be from previous chemo I’ve taken. I’m also going to do a fancy echocardiogram that will let us see if there are changes to my heart now and track it in the future to see if this chemo is hurting my heart.

Finally, I have to rave about what a wonderful time I had at the marathon this past Sunday. We did hang out in the VIP section which is right next to the finish line chute. We were able to see all the winners go by and it was so thrilling. The male winner of the half-marathon was unbelievably fast as he tore through the finish line. I also connected with the race director and got my medal and my picture at the finish line. I haven’t shared before why this particular race was so important to me. In 2011 I ran the marathon and had to quit at mile 7 – I was newly pregnant with my daughter and a visit to the port-a-potty revealed I was bleeding, so I took medical transport to the finish line. In 2016 while I was on my first chemo I went to spectate and remember so distinctly how it hurt my hands to clap (one of my side effects) and I was sure I would run the race the next year in a tshirt that said, “I beat cancer.” And I couldn’t run the race in 2017 or 2018 or 2019. And I reached the point where I’d never be able to run it wearing a shirt that said I beat cancer. But I could run it in a shirt that said, “I have cancer.” It was a dream years in the making to finish this race and I was so grateful to get to have that experience.

Weekly Update #60

Unfortunately I don’t have very satisfying updates on most of what I talked about last week. I still do not have my Lonsurf – the pharmacy that couldn’t check it out never managed to, so I transferred the prescription to a different pharmacy. The soonest they could get it to me is Wednesday, so I will start this week on either Wednesday or Thursday depending on whether it arrives in time for my breakfast dose.

I also have no update on clinical trials. I still don’t have an appointment with MD Anderson, even after my doctor checked in with them last week. I’m sure it will come at some point and I am now feeling less precious about scheduling things that might overlap.

My pain has been getting worse for a bit and it significantly ramped up in the past week. I’m now on painkillers about 12-16 hours a day. It hurts the most when I’m in bed (it’s my ribs and back that hurt and it’s impossible not to lay on those and sleep), so my sleep is not great. I’m spending lots of time in bed to get adequate night sleep and still taking naps during the day. This is going to be a season of my life where I have to slow down and spend a lot of time reading and watching movies. I did still manage to get in a run today and I’m hoping exercise can help keep the pain at bay, if not I’ll still keep working out and just need more downtime, I guess.

In something that may feel familiar to others with chronic illness, I am also pleased today because I managed to capture a reading of my heart having an episode. I’ve been having them for nearly a year but they are intermittent and unpredictable so I have never managed to get an EKG while I was having one. You can’t treat what you can’t see, so while my cardiologist believes me he hasn’t been able to diagnose or treat it. I have a home mini EKG machine my cardiologist recommended and I send him readings whenever things feel off, so far they’ve all been fast heart rates in a normal rhythm. Today on my run my heart started feeling off like it does sometime and I kept running home so I’d still be in that condition to capture my reading. The app said it say possible atrial fibrillation, we’ll see what an actual human says after reading it. UPDATE: I just got a call from the cardiologist office that I have something called atrial flutter. I have a follow up appointment in a few weeks and we’ll talk about medicine or treatment options. They made a big deal about it not being life-threatening, I guess it’s just something else to add to the diagnosis pile.

To end, I do have some very good news. After I posted here last week that I was so bummed my new chemo schedule would mean missing my half-marathon, some lovely friends managed to get me in touch with the race director. I get to hang out in the VIP section on race day and watch the runners, as well as get my medal and take a picture at the finish line. It’s so much more than I ever would have asked for! The race director gave me two tickets to the VIP section, so if anyone wants to come hang out with me this Sunday morning let me know!

Weekly Update #59

Nearly a week has passed since my last update and I still don’t have my Lonsurf. Currently it is at pharmacy #3 who has spent 2 days trying just to bill it – apparently their system won’t let them charge my insurance and the copay assistance program. I’m going to make some calls to my insurance and see if I should just pay the $2K+ copay and then wait to get reimbursed or if that has some risks I’m unaware of. I am trying to ignore the little voice screaming, “You’re not getting any cancer treatment right now!!” and enjoy this mini-vacation from chemo.

I spoke more with my doctors about my trial options and we have decided to move forward with the one at MD Anderson. I’m currently waiting for an appointment to be scheduled there for me to talk to the team and sign consent forms. There is not currently a place for me in the trial, but they’re waiting on some paperwork that will change that in early March. If I could get started on my Lonsurf that would be great – it’s a 28-day protocol so I could get in one whole cycle before starting this trial. I hate feeling like I cannot commit to anything in the next week because I could be called to MD Anderson at any time. You get to give no input into your appointments there, you just show up when they schedule you and if you want to reschedule it can be a lengthy wait.

One of the other reasons I am annoyed at the wait for this chemo is that at this point I’ll start taking it in time for my last day of my two on-weeks to be the day of my half-marathon. So, it feels pretty unlikely I will be running this race. I could get a deferral to next year, but it’s also pretty unlikely I’ll be able to run it then. I want to send the organizers a link to the 13.1 miles I ran last week and ask them to give me my finishers shirt and medal anyway but I am pretty sure it doesn’t work like that.

The last thing I want to talk about is wallowing. I am still feeling low in my mood and energy and unsure how best to take care of myself. Are naps and french fries self care or a path to worse mood and energy levels? I asked about it on my Instagram this morning and received a lot of helpful information to chew on. I’m definitely still open to hearing more thoughts on the subject! I want to meet myself where I am, and make choices so tomorrow is as good as it can be.

Weekly Update #58

What a week it has been. I have heard more about my options but ultimately I am still in the unknown.

I had my chemo teach for Lonsurf yesterday. That’s where you meet with a member of the team and talk about how to take the drug, side effects, how to deal with those side effects, any restrictions I need to follow, and possible interactions I need to avoid. I got to meet the team pharmacist who is fantastic. We also talked about chemo pumps, which I am kind of obsessed with after trying multiple kinds (team elastomeric pump over here). It sounds like it is pretty hard to predict when the side effects will hit, so I just have to start the drug and see how it goes. So inconvenient when my providers can’t predict the future.

The Lonsurf is currently waiting for me at the pharmacy. The pharmacist called me yesterday to let me know that the copay is $2K and ask if he could enroll me in a copay assistance program. Yep, that would be great, thanks. So I’m waiting for that to go through and then I’ll be able to pick it up and get started.

I also talked to my doctor about a trial option she is excited about. It has some exciting preliminary data and makes sense for my case. It’s a phase 2 trial which is my preference (it means I would be testing a new drug at the dose they believe to be most effective). Downside number 1 is that it involves a drug that I had to stop taking previously because I had a rare but terrible side effect – it made a hole in my colon. Apparently that doesn’t exclude me from the study and they say it is unlikely to happen again, so I will consider it with trepidation. Downside number 2 is that it is in Denver and would require me to fly there every 3 weeks to receive treatment. That’s a big expense, and sounds exhausting.

There is one other trial we are currently discussing. That one also has some promising initial data and in theory should be effective for my cancer. It is in Houston, which is drivable for me and home to many friends. For this trial downside 1 is that it is a phase 1 trial, which is where they are testing in humans for the first time to find the most effective dose. So I could be on an awesome drug but at too low a dose for it to be therapeutic, or I could be on a toxic dose and have awful consequences. The other downside is that currently there is no slot for me on this trial. I’m on their list and my doctor seems to believe one will open up, but it’s not certain. I have no idea how you compare these options or how to make this decision. I’m going to talk to my doctors about whether these are my best options and I should pick one, or if I could pass them both up and have something better pop up in the next few months.

I am having a hard time with all of this. I am not doing the self-care that would be most helpful – getting plenty of sleep, writing about my feelings, meditating. I don’t know how long to let myself wallow, and it is a self-perpetuating cycle, it makes you want to wallow more. My new chemo will definitely go better if I am taking good care of myself, maybe that will be enough to motivate me.

I do want to end on a positive note and share that I ran a half-marathon distance on Sunday! It was my last long training run and it was a tough one but I made it to the end. Big thanks to the house on my route that has a drinking fountain in their front yard – it allowed me to fill up my water bottle at a time when I really needed it. I’ll only be off my new chemo for 5 days before my race so I don’t know if I’ll have the energy that day, but I met my goal and I feel proud of myself for sticking to it.

Weekly Update #57

It has been a while since I have had to type this, but my scan results last week were not great. Not terrible, but not great. Several of my spots of cancer – in my lungs and in my ribs – are bigger compared to my November scan. Nothing is a lot bigger, but any progression means that my regimen is not working and it is time to move on to something else.

So, what comes next? A clinical trial. Right now my team is looking at what is available and picking out a first choice, a backup, and a backup backup. The way clinical trials work, though, is that I cannot start any time I want. They are enrolling and starting new patients at certain windows. So, while we are finding the right trial for me and waiting for them to be starting new patients, I am going to go on a new chemotherapy. It is an oral chemotherapy called Lonsurf, which is similar to my first chemo, also a pill. It will be a really different rhythm than infusion. Instead of a couple days of feeling really crummy, this will be gradually feeling more and more run down over a couple weeks, and then recovering over a couple more.

I don’t mind that switching to oral chemo means no more 6 hour infusion sessions, but overall I am bummed about these changes. I am giving up a known, livable treatment plan for the unknown. I don’t know how I will feel on my new chemo, and I also don’t know how long I’ll be on it before I’ll start on a clinical trial. I just have to wait until I get the call, unable to plan very far into the future – once I get the call I will probably be on the trial in about two weeks.

The other big unknown about the trial is where it will happen. One of the options is at my local cancer center, but there are also options at MD Anderson and a couple other sites in Texas. I would definitely prefer to get treatment locally, but if I have to travel to get access to the most promising drug I will make that work.

All I can think about is how will timing work out with my half-marathon and Spring Break and various other commitments. I am trying to feel my grief and discomfort and lean into self-care. I’m glad I have the time to take care of myself this way right now.

Weekly Update #56

Will I ever get back to actually doing these weekly? Who knows! I’d sure like to.

Today was scan day for me. It’s a nice routine at my cancer center – I know what to wear so I don’t have to change into scrubs, I know the staff and it’s always nice to visit with them, and the protocol recently changed so I was on the table for less than 15 minutes. Then I came home and ate and went about my day. I have the appointment to talk about my results on Thursday.

It’s an especially doctor-heavy time right now. I have to be at the cancer center every day but Friday this week since it’s a chemo week, and I also have to do my follow-up with my cardiologist (a precaution because of some of the drugs I take) this week. Once I have my scan results I also need to call my radiation oncologist and visit her to discuss how to plan when I get more treatment from her.

I made it through yet another long run (12.5 miles) and still regret signing up for this race. I have just one more long run before the race, thankfully, and then I can go back to running much shorter distances. Yesterday I was ready to skip it and do the bare minimum to get through the race, but with 24 hours of recovery I feel like the pride of following my entire training plan will be worth it.

In a cancer discussion group I am a part of, someone recently brought up the topic of how, exactly, does a person die from cancer. It’s something I have wondered about myself – what will actually cause my death and what will the last months be like? I’m now leaning into doing more end of life research and planning. I just finished reading Advice for Future Corpses by Sallie Tisdale, which has really good info about what the last months, weeks, days are like and also a couple really helpful appendices with planning information. I also ordered a copy of Voicing My Choices, which is a tool for capturing your wishes around end of life, especially medical treatment. I am planning to work through those tools in the next week or two, and I have a few more books coming to read. Really facing and thinking about this is intense, but as with all things that feel forbidden, actually facing it and removing the taboo will ultimately be empowering and make me feel better.

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 #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.