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#64

This is my first update since I started self-isolating two weeks ago, which happened to coincide with the two weeks of my chemo cycle where I take the medicine.

It has been really hard to have my household at home to see what my experience looks like; normally I get to do lots of my resting while they are at work and school and save the best of me for time with them. The past two days we have been starting homeschool for my daughter, but have also been the days with the most fatigue and I feel so much guilt for letting down both my husband and my daughter. We all have extra stress going on and I wish I could be relieving some in our household, not adding more.

Another way I wish I was helpful and feel like I am letting people down is sewing masks for my local cancer clinic. I contacted my oncologist and said I’d be happy to step up if there was a need, which she immediately responded that there was. I thought I would finish these on Friday of last week and they’d be able to use them all this week, but instead it’s Tuesday and I still have so much sewing to do plus I need to launder them before dropping them off. I know they’ll help whenever they arrive but it’s so frustrating to lack the energy to finish this task that is so important to me.

The active treatment during a pandemic part of my life is going surprisingly well. I am so glad to be on oral chemo right now, which I take entirely at home, and the pharmacy even ships the medicine to me. I can do my check ups via telehealth, which has been going really smoothly. I only need to leave my house for blood work biweekly, which I am doing at a low-traffic lab location and following disinfecting protocol afterwards. I will have a scan this week or next which will also require me to leave the house.

My pain has finally been trending down, which is great news. I am glad to be on way fewer pain meds. It also is a hopeful sign (though no guarantee) that my new chemo regimen is effective – much of my pain is from cancer so often less cancer means less pain. Again, I have a scan soon so we’ll know one way or another. I don’t love this treatment overall, but for a global pandemic it is pretty optimal so I would like to be able to stay on it.

I hope you’re all doing okay, friends. If you want to vent about your hard times in the comments I will read and send you so much love. I am having my own struggles, but still have plenty of empathy left for y’all.

Not Like This

Last night I got the call from my oncologist – it is time for me and my family to go into self-isolation. I need to leave the house as little as possible, wear protective gear when I do, and disinfect when I get home. We should pull my daughter from school, whether it is closed or not. My husband should work from home if possible. It is scary and disappointing and inconvenient, but the primary emotion it brings up is one I haven’t accessed much during my cancer – anger.

I am angry at the idea that I have suffered through 4.5 years of cancer treatment to be threatened by a virus that is a mild cold for most. I am angry that it didn’t need to become a pandemic, but our global governments have mismanaged it into one. I am angry that my small joys are being stricken from me – going to see movies, midday naps while my daughter is at school, volunteer work at my cancer center. I have plenty of books and yarn and TV to fill the hours, but it is demoralizing to have no end in sight. And I think I am most angry that I am not even immunocompromised. These are all the right steps to take because the risk of things going bad for me is too high, and it shatters my illusion that I can live like a healthy person. I can’t count on good hygiene to let me do the things that are important to me.

I feel like I should close on a positive note, with a list of all the businesses and people who have been so generous and found solutions to keep some normality during this season. But I’m not ready to go let go of my anger and move to appreciation yet. Maybe by my normal update next week.

Weekly Update #63

Last week was a bit of a rollercoaster, luckily ending on a high note. As I have had to increase my levels of painkillers, I have been finding it more difficult to urinate. It’s a relatively common side effect and one that I was handling okay with various breathing and positioning techniques. On Wednesday, however, I realized that the entire day had passed without me ever fully emptying my bladder. I was afraid of getting into a very bad situation, so I called the nurse line at 10:30pm and they recommended going to the ER.

The ER visit ended up being quite an adventure. The doctors there were very worried about the combination of me being unable to empty my bladder plus the new nerve sensations just nearby in my butt cheek. They sent me for an MRI to see if there was a physical problem causing these issues. The MRI came back clear, but it was an excruciating experience. Laying on MRI tables always sets off the pain in my ribs, which tends to radiate around the left side of my body feeling like flames. For the first time ever I had to use my panic button and ask to be let out of the machine early because the pain was simply too much for me to bear for another second. I only had 4 minutes left but I couldn’t do it. I sobbed and maybe had a mini panic attack while walking around so the pain could subside. They gave me some IV morphine and between that and a break I was finally able to finish. After that the doctor agreed to give me a catheter and I thought we were done. He tried to convince me to be admitted so I could see a neurologist and a urologist. He said he didn’t think I needed emergency surgery, which I guess means it had been a concern of his at some point (?) and also that I may have the catheter permanently. I told him I would rather go home and set up the follow-up appointments myself. I was able to get in to see my oncology team that morning and they agreed that they have been keeping an eye on these issues and have a plan and were happy to remove the catheter for me, thank goodness. I spent the rest of the day catching up on rest.

I said that the week ended on a high note, and that is the knitting retreat that I went to on Friday. I was supposed to head over on Thursday but was waylaid by my medical drama. I was so pleased to be cleared to go on Friday morning. It was a weekend at a beautiful resort surrounded by some of the most lovely people. I’ve been going to this retreat for years, usually as a teacher, and have built some wonderful relationships over that time. I got so many tight hugs this year – I was in bad shape when I attended last year and there was so much relief that I am doing better now. It felt really great to be surrounded by that kind of love and affection. I was also really honored that I got to choose one of the charities that the event raised money for – Wonders + Worries, which has provided emotional care for my daughter throughout my illness and is a very special organization. I left feeling so full of love and inspiration and gratitude.

This week I start back up on my oral chemo, so it was really great to fortify myself before I get to the part where I feel worse again. I will have lots of warm memories to surround myself in when I need a pick-me-up this week.

Weekly Update #62

Last week I was still really exhausted from my oral chemo. I am enjoying finally getting some energy back this week and knowing I have another week before it all starts up again. We went to a local Renaissance Faire this weekend and I was able to walk around outside for a 7 hour day. That’s a really long day for me and I made it without a map or mobility aid, it felt good to feel so good.

I had an interesting chat with my doctor yesterday about a paper she read recently. There is some evidence that patients like me who develop a specific mutation that makes us resistant to one of the drugs in my most recent infusion combo, that it can go away over time. She is going to do some more research, it means that that chemo may be available to me again as an option and we might do that instead of moving to a clinical trial next. This sounds kind of too good to be true, but I am definitely crossing my fingers!

I have a new symptom and it is making me want to crawl out of my skin. I have mentioned before that I have an area on one side of my butt and extending down the back of my leg that is numb. Something has changed and now that nerve is instead giving feedback all the time like my muscles are either contracting really hard or being stretched out. I haven’t found anything that helps it, just ways to distract myself from it. It’s not painful, it’s just an incredibly unpleasant sensation and it is so hard to ignore when it flares up.

I have the next doses of my new drug in hand – after I called the pharmacy to schedule delivery I realized my heart was pounding, so clearly my body has some memory of how stressful it was to get the last batch. For now I am trying to figure out the rhythm of when are rest days and when are more reliable work days.

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.