Weekly Update #89

I know I have worried a lot of folks with my long radio silence. I’m here, I have just been having a rough time lately.

Before I get into that, I want to mention that I was interviewed for a podcast called Grief Is A Sneaky Bitch and the episode came out this week! I talk about the pre-grieving I am doing, knowing I am chronically ill and death is on my horizon, and the host, Lisa Keefauver is an amazing expert on grief. Here’s a link to my episode, I think you will really like it.

So, as I opened with, I have been having a hard time recently. I wasn’t ready to talk about it last time I posted, but when I had a CT scan just before starting the trial, it showed that there’s some activity in my pelvis. There’s a mass that involves my original tumor site and my cervix that they can’t tell from the pictures whether it’s a recurrence at my original site (most likely) or new cervical cancer (unlikely). The mass is squishing one of my ureters, the tube between your kidney and your bladder, so we’re keeping an eye on it and some point we’ll need to have a stent placed to make sure my ureter can keep on draining.

This news was really scary to hear. I haven’t been able to share it with almost anyone, it just feels so awful. Since reading that radiology report, I have noticed discomfort in my pelvis and it has gotten into my head that I am feeling my body rot away. I recognize that only having these sensations after reading about the mass indicates that maybe my anxiety brain is involved in the feelings, but that doesn’t remove the fear it brings to my body.

Along with this, my appetite has plummeted again. I’ve lost more weight and am about to start some meds to stimulate my appetite and prevent me from feeling full so quickly. My nutrition situation is so bad, I’m starting to get winded just walking around the house because I don’t have the energy to support myself and I’ve been losing muscle mass. So I’m trying to do just 10 minutes of walking outdoors each day and my nutritionist and I brainstormed a few options to increase my intake. I feel embarrassed that I can’t solve this problem that has been ongoing since July, and my nutritionist always makes me feel better by reminding me that I really am trying my hardest. Unintentional weight loss has never been an issue for me in my life, but man is it hard to force yourself to eat when food is unappetizing.

I’m sure not eating enough is contributing to my mood, which has been low lately, too. I feel like that is finally improving. I have the energy today to write this post. And I can imagine replying to an email or two (so sorry if you’re waiting in my inbox). My mood is still precarious, but Biden winning the election is definitely helping to tilt everything towards more manageable right now.

Next week I head back to MD Anderson for my second dose of my trial med. It should all go smoothly now that I know what to expect. I’ll miss my family for a week, but it will be the last full week I’ll need to be away for the trial. And truly, it is very joyful to get to spend time with my friend and her family while I’m there.

My joy for this past week is that Joe Biden won the election. When I saw the results and felt hope, I realized what an unfamiliar sensation it is in my body and frankly I didn’t like it. But I’ve experienced it more and more this week and it is starting to feel really good. I am excited for his presidency to begin and for us to undo the mess caused by the Trump administration. And also to watch Trump et al. go to jail. I’m excited about that, too.

Weekly Update #80

I cannot believe that I missed my cancer-versary last week – the anniversary of my cancer diagnosis. It was 5 years, an important milestone I had long dreamed of celebrating. When you first get diagnosed and immediately search survival statistics, they are all phrased as percentage of those diagnosed still alive 5 years later. So 5 years becomes this magic number in your head. Here I am, still alive 5 years later. The bigger celebration for me will be next year when I get to 5 years since realizing I had stage 4 cancer. The survival rates are incredibly different (by literally an order of magnitude) and I truly thought it would be a miracle for me to reach 5 years of stage 4. But it’s going to happen next year. And this year I have made it to 5 years since I was ever diagnosed. Like last year, I am incredibly proud of having made it this far. Of the luck and putting up with unpleasantness that has allowed me to make it another year sick and alive.

This week has been an eventful one. I upped my dose on Tuesday of last week to the full dose of Stivarga and just a few days later had the experience where you message the office about a side effect and the doctor is calling you 10 minutes later. Eek. I was having a decent amount of blood show up on my pads, which is not normal, and is a risky side effect of this drug. My doctor immediately took me off the drug for the rest of the week and then told me to take the following rest week as normal.

I went in-person today to see my doctor. She said that I looked okay, much better than my last in-person visit where I was kind of droopy with dehydration. We had a nurse from the Gynecological Oncology team join us and do an internal exam. Unfortunately she was not able to find the source of the bleeding. So, that means I need to go for a vaginal ultrasound later this week to see if it reveals anything. That said, the nurse didn’t actually see any fresh blood and my oncologist took that as heartening and said that next week I can start on the middle dose of Stivarga, pending bloodwork on Monday showing that everything looks good.

I’m also currently taking a break from my blood thinner to really cut off any bleeding that may be happening and allow it to clot and stop before we start me back up on this medicine. I followed up with my cardiologist today and he said my heart looks really healthy and strong.

Overall I am doing okay. I have a lot of fatigue, I think I could easily sleep 16 hours a day and I spend a lot of time trying to fight off falling asleep in my chair. So I am going to prioritize naps and physical movement, both of which can help boost energy. I have some suggestions for some of the other side effects I have going on.

My recent joy is that I was part of a group of women that arranged an anti-racism march that went really well. We were happy with the turnout and the energy at the event – really positive. It was great to see our idea become real and to see the number of people who wanted to show up and affirm the same values as us.

Weekly Update #68

I am still feeling really energetic, more than I have had for a while, it feels like. These oral chemo cycles have more variance than the infusions did – it’s tougher to predict how I will feel during and after treatment time.

I’ve been enjoying this energy in lots of ways. I have started daily morning walks with my running headphones so I can listen to podcasts. I’m also doing a daily exercise program called Momma Strong. It is 15 minute workouts and has so many modifications available for bodies with restrictions, which mine definitely has. It feels great to be back to exercising and in a way that feels sustainable. We’ll see if I can keep it up during chemo as optimistically as I am feeling right now.

Chemo starts up on Wednesday of this week. My daughter and I are trying to build our week around the idea that I will feel worse towards the end. So we’re playing the complicated board games like Mousetrap and Operation today and saving ones I can play from the couch for later on. And we’re going to try a system where I talk about how many things I think I can do with her in a day, and then she gets to pick how she wants to spend my energy together. I hope it will make it less sad for both of us when I can’t be present in the way that I like. We’ve been having so much fun together the past couple weeks, really playing and bonding and communicating so well, and I want to backslide as little as possible.

I got a call today from Wonders and Worries, a local charity we’ve been using the services of for years – they support children who have a parent with a serious illness, providing counseling, support groups, etc. They have a toy MRI machine, a doll with a port, and can make healthcare less mysterious and scary to kids. They have been so helpful with my daughter. At the knitting retreat I attended in March I got to select a charity to fundraise for that weekend, and Wonders and Worries received the money and wanted to thank me for selecting them. They said that the money is being used this week to help provide services to families, which makes me so happy. I’m so grateful for the generosity of the retreat attendees who made the donation possible, and that I was able to share about this incredible organization with that audience.

The highlight of my past week has been helping my daughter practice roller skating. We got an outgrown pair from a friend and she has been practicing daily. It brings me so much pride to watch her work hard at a skill she wants to improve, and I love that she feels safest when we hold hands while we go. She’s past the age where she would want to hold hands on a walk, so it is a real treat to get to do it daily.

I hope you’re all finding joy in your lives, despite our bizarre circumstances.

Weekly Update #65

Another two weeks have passed. Time feels so weird in this pandemic time. I was looking back at my last entry and it all feels so far away. I had forgotten nearly all of what was happening then. I’m sure I’ll feel the same way reading this in a week.

Last week I had a scan on Monday. It was incredibly bizarre to go to a clinic at this period in time. We scheduled my scan at a local branch of a radiology practice, rather than the office I normally go to attached to the hospital, to lower my risk. Even still, before I could enter I was interviewed by a pair in head to toe PPE including face masks and coats. They took my temp, asked screening questions, checked I was on the list for that day, and then finally opened the door for me to go in. One thing I hadn’t realized is how much masks hide people’s facial expressions. I could tell the woman at the front desk who checked me in was truly smiling because it reached her eyes, but for most others it was impossible to tell what they were thinking or trying to silently communicate.

The scan involves injecting a constrast dye, and we wanted to use my port so we’d go through the cleaning process I’m supposed to do every 4-8 weeks (depends on who you ask) instead of setting up a separate appointment. The tech who accessed it was unhappy with the amount of blood return he got and recommended a dye study test be done to follow up. In a normal world that would have been done last week. In today’s world we’re putting it off at least 2 months. The tech mentioned that his wife crochets and when I asked him about it he showed me page after page of her projects on his phone. I love a proud crafty husband.

That was a lot of lead up to the scan results, which were stable. So, the plan is for me to stay on the same chemo for the next two months. I like that idea, I feel safe on this drug that I can take at home and only requires two blood draws out of the house over the four week cycle. While stable is always good news for me, this doesn’t feel like good news. Partially because my blood marker, CEA, is climbing, which means that the next scan could have bad results. And apparently this drug, Lonsurf, rarely does shrink anyone’s cancer, its role is really just to keep them stable. That sounds desperate to me, makes it feel less safe.

There is still a clinical trial at MD Anderson that we are hoping to enroll me in, and it is scheduled to accept new patients in June, which is when my two months of treatment will be up. I never imagined that I would be leaving the house in June and am surprised my doctor thinks that will be reasonable, but she’s far more informed about the risks than I am. And really, all I can do is wait until then and see what happens.

As for how I’m feeling physically – mostly just very tired. I’m still needing a nap most days, on top of 9-10 hours at night. An amount that wouldn’t be a problem if I didn’t have to be in charge of schooling an 8 year old, but is tough in the circumstances. I have managed two runs in the 3.5 weeks I have been home. A few more walks than that, but generally not much activity. I know it’s so important to help fatigue and for my health, but it requires a herculean effort to achieve some days. If anyone has any hints on staying active despite fatigue I will take it.

As always during this time, I hope you’re all well. I’m thinking of my cancer community and what a hard time this is for us all. I’m thinking of my friends and how much I wish we could be in person hugging. My ears are always open if you’re having a hard time. ❤

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 #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.