Keep Making Plans

If you drive to the top of the parking garage of the healthcare facility where I’m receiving care and look to the south along the highway, you will see a billboard with bold text in all capital letters that says "KEEP MAKING PLANS." It’s an advertisement for their cancer treatment program. 

As someone who is in the active throes of receiving treatment for cancer, this is quite possibly the most absurd and laughable marketing slogan I’ve ever heard. I understand its intent, and the hopefulness that it’s meant to convey, this idea that we as a healthcare institution will help carry you through this process of cancer and someday you will make it out on the other side, so keep making plans in the meantime. 

But why this is so laughable to me is the fact that I have no idea when my brain or my body is going to betray me, so making plans feels nearly impossible. My life is now measured minutes and hours, maybe days, but definitely not in weeks or months, and certainly not in years. Any thought of the long-term future immediately feels overwhelming and distressing to me. I have no idea how to keep making plans when I’m not sure what a day is going to bring.

Exhibit A: Take for instance this past Thursday. I was in the middle of a Zoom call for work. (Yes, I’m also trying to hold down my job in the midst of all this. I started working in small doses 2 weeks after I was discharged from the hospital, which was 3 weeks after surgery.) I could feel a seizure coming on, first in my left leg. I had enough time to both mute and turn off my camera before the worst of it hit, thankfully, and I had time to yell for my mom, as both my parents were around, also thankfully. (My parents are saints, and I have no idea how I would make it through this process without them.) 

My mom came running in, and by that point, my left leg had totally seized up, and I couldn’t move my left arm in the slightest and convulsions were repeatedly unfolding. I have what's called focal seizures, which are different from generalized seizures, which affect the whole body. Focal seizures affect only one part of the body. So, when I have a seizure, it affects only the left side of my body, and I generally never lose consciousness. I can also typically speak while they are happening. My mom grabbed my left hand while my dad held my left leg steady. Thankfully, I was sitting in a chair already and not walking around or doing something; otherwise, I would have undoubtedly come crashing down.

I had plans to go to rehab that day, but clearly my brain had other plans that day. Which is why that marketing slogan is so ridiculous to me at times. How do I keep making plans when I never know when my body may decide otherwise? I appreciate the intent and hope of what that slogan is attempting to convey, but in the midst of the chaos, it feels virtually impossible to keep making plans. I can't even make plans to get to rehab in the course of a single day.

So, I decided to ask ChatGPT if it had any other alternatives to the slogan. This is what it offered up:

1. "Keep scheduling uncertainty"
2. "Keep planning for surprises"
3. "Keep penciling in the unknown."
4. "Keep arranging for the unexpected."
5. "Keep RSVP-ing to uncertainty."
6. "Keep preparing for plot twists."
7. "Keep reserving for the unpredictable."

Ir seems for the time being my best alternative to "KEEP MAKING PLANS" is "KEEP PENCILING IN THE UNKNOWN," and to keep living life one hour at a time. 

Thank God his mercies are new every morning.

And every hour.

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;
    great is your faithfulness.
24 I say to myself, The Lord is my portion;
    therefore I will wait for him.”

Lamentations 3:22-24

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

Here’s the wild part to the seizure I had on Thursday. While it was happening, I felt this involuntary prayer slip out of my mouth, barely above a whisper. I just said, "Jesus, make it stop." And instantly, and I do mean instantly, the convulsions stopped and my muscles stilled. Now, I still couldn’t move my left leg or arm because I lost all motor control, but I was the worst of the seizure did indeed stop. We eventually got a hold of my oncologist to see what we needed to do next. As much as I loathe the idea, he upped my dose of my original seizure medication, the one that causes depression, and upped the dose of the new seizure medication. So I’m on both now meds now. I didn’t have to go to the hospital, but I did wipe all my appointments for the rest of the day, including all of my rehab therapies and an acupuncture appointment I was supposed to have. I ended up sleeping most of the afternoon.

Apart from the seizure, the beginning of the week was equally emotionally tumultuous because I had an appointment with the oncology nurse to discuss the basics of chemo and radiation. Based on what she explained, if my body can hack all of the cycles, I will be in treatment for a little over 14 months. It just makes me feel like my life is about to disappear into the Bermuda triangle of cancer, where things go in, but mysteriously never come out. I started to drown in the notion that I’m about to lose a year of my life to treatment. That’s where things really start to feel overwhelming if I think about the future for too long. I also started seeing a counselor earlier this week, and I think she’s going to be incredibly helpful as she specializes in chronic health conditions. I loved her bit of wisdom: "Only rabbits belong in the rabbit hole."  🐇 I keep rehearsing that to myself over and over again.

While I do feel like there’s still some residual effects from the seizure, I did manage to make it to an appointment with my occupational therapist on Friday, and he seemed encouraged by what I was still able to do. So while I personally feel like there were some grip strength and motor control setbacks after the seizure, he was still pleased with what I could do. It’s hard for me to remember those things, that not all is lost despite my perception telling me so.

Next week, I will continue to have rehab and I will have a follow up appointment with my oncologist on Wednesday. I’m sure we will discuss everything that happened with the seizure and the increase of the medication, but we will also discuss next steps for chemo and radiation, including the timeline for when it will actually start. I will also have a consult with the radiation oncologist on Thursday morning. We will go over any questions I have about the process and also discuss the timeline we map out with my oncologist.

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Prayer requests:

1. Pray that no more seizures would occur.
2. Pray that depression would not take hold as I get back on the original anti-seizure medication.
3. Pray that I would be radiant through radiation (I've been praying this one a lot as I prepare for next steps.)
4. Pray that I would love Jesus more and more and that my gaze and my thoughts would be fixed on him amid the trials.
5. Pray that I would be winsome and tender-hearted through this process.