Weekly Update #69

It has been a rough week since I last posted, with the overarching theme of pain.

Last Tuesday, the day after I wrote my last post, I woke up with my knee killing me. It got worse as the day went on and when I got up on Wednesday it could barely hold my body weight and I was worried about falling. I went into my doctor’s office to take a look at a bunch of possibilities and we didn’t see anything concerning with my knee, but did confirm that my blood work showed my immune system was down and I needed to delay my next round of chemo.

Since Tuesday it seems I wake up each day with a different part of me hurting, and I am like a zombie filled with pain meds and trying to tune out the pain by watching TV. The past couple nights I have barely slept because every position I lay in makes my ribs hurt so much the pain wakes me up. I’m on the max allowed dose of pain meds, I’ve tried ice and heat and stretches and rest and nothing is helping. It is pretty miserable.

I had more blood drawn today so we can see if my immune system has improved and I can start on my chemo this week. Fingers crossed that’s the case. For whatever reason, chemo often reduces my pain.

The one highlight of my week is that my daughter put together an incredible collection of Mother’s Day surprises for me. My favorite was the PowerPoint she created for me and presented on the big day, complete with a laser pointer. It was adorable that she wanted to badly to create a special day for me.

Time for me to get back to alternately trying for a small nap and watching TV. Hope this week goes up from here!

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 #67

I am feeling much better today compared to last week. I have been able to hydrate and eat some nutritious food this week and it was a big boon to my mental health.

Unfortunately, as the chemo exhaustion and nausea fade away, my pain is returning. It’s a frustrating trade-off. The rhythm for this oral chemo doesn’t seem to have a period where I feel really good – just different kinds of discomfort. And as someone who will be getting some kind of treatment for the rest of my life, it means I have weird feelings about this one. I want it to work because of course I do, but if it does that means longer on it and feeling like this.

I do have enough energy for exercise, though, and am trying to figure out what to do. Running is off the table for now because I have some sort of hip injury that I can’t shake. I’d like to do something to improve my strength and feel overwhelmed at the online options. I welcome any suggestions!

Last week I had to have an in-person visit with one of my doctors. The building has organized things so that my clinic’s floor only sees immunocompromised patients, and I was impressed with how safe I felt while there. My doctor recommended pelvic floor PT and I was in such a daze to be out of the house that I didn’t ask any follow-up questions like can those appointments be done via telemedicine (surely not?) and what is the risk of putting it off until it’s safer to leave the house. I need to follow up and ask those questions, but I’m not looking forward to the PT so I am putting it off.

That’s about all for this week. I have a full week before I have to go back onto my chemo pills but it already feels imminent. This weekend is my 12th wedding anniversary so I would love to focus my energy on that instead, but it’s definitely not where my thoughts are naturally traveling. More well wishes to everyone out there.

Weekly Update #66

In the past two weeks I took all the doses for round three of this oral chemo, Lonsurf. I am so incredibly glad to be on the other side of the active part of this round; it was a tough one. I was really nauseous and we began to work our way up the anti-emetic ladder. Continual nausea is so demoralizing. I was picking between eating or drinking most of the time, my body didn’t have room for both. It is such a relief to just drink when I’m thirsty and not regret taking more than a sip.

In past cycles this week is when the sleepiness is strongest. I have already taken a nap today and wouldn’t say no to another; we’ll see how I handle the week. My daughter and I did more walking last week – we went out for physically distant visits with friends where we chatted from opposite ends of the lawn – and I think that helped with my energy levels. So I’m going to try to put forth the effort to make that happen again this week, hoping that the act of doing it makes it easier.

I have some big cancer-related COVID-times fears that I want to talk about. It’s intense stuff related to my death, FYI, if that’s something you want to skip, avoid the next two paragraphs.

I am really scared that I will die during this quarantine. I believe the estimates that we might be only 1 month into 18-24 months mostly at home. I’m 1.5 years into an estimate of having 3-5 more years to live. The math includes an uncomfortably large overlap. I have had the benefit of time to make plans for the end of my life, and they include traveling to see people and definitely getting to hug those I care about again. It is incredibly sad to imagine not getting to mourn with the people I planned on mourning with.

And here is the other, selfish, fear I have around dying during this quarantine. I am afraid that my death will matter less to people, due to the pandemic that surrounds us. I always imagined my death being one of those things that makes people go home and hug their children tighter, a senseless loss. But we’re having thousands of senseless losses each day due to COVID-19. Won’t it numb people? How can it not? I feel like dying now would make me a small name on a long list, and nobody’s death should feel that way.

I hope everyone continues to stay safe and healthy.

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.

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!