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. ❤