Everything Hurts but I’m Not Dying

Everything Hurts but I’m Not Dying

emilyThis morning I vacuumed. Well, sort of. I rolled our heavy yellow Hoover over near the living room window where Carl the Rescue Ficus™ resides during the winter months and sucked up the brown, crusty leaves he’d shed.

Just yesterday, Dan had moved him to the back yard. (That’s where Carl summers.) And the 30-something ficus with the braided trunk customarily dropped his jankiest leaves all across the living room floor in protest. (Carl doesn’t like change.)

The dried up leaves bugged me, so I vacuumed.

But when I say “I vacummed” I don’t mean to imply that I was standing upright and dancing across the living room floor like some ’50s housewife in a floofy skirt and heels. Nope. I was sitting in a rocking chair, wearing the same pajamas I’d had on for three days, stabbing individual ficus leaves with the hose attachment. Because (as most of you already know) I have a brain tumor, am recovering from brain surgery, and am waiting for the side effects of my chemotherapy and radiation treatments to subside.

But wheeling that vacuum across the living room and sucking a couple dozen leaves off the floor would be an accomplishment for me even before I started collecting medical procedures at Barnes-Jewish Hospital in February, and if you bear with me I’ll tell you why.

***

A few days before I found out about the brain tumor, I had a bit of a breakdown at home. Some pretty significant life changes were headed my way, and I felt incapable. I walked away from my laptop one evening and went full metal drama queen on the bed. Dan came to check on me.

“I can’t do this,” I said to him. “And I don’t mean that like I’m overwhelmed right now and tomorrow I’ll get up like I always do and just figure it out. I’m physically incapable of walking. The pain is too much of a distraction to think. I can’t remember the last time I slept.” I started sobbing.

“Okay, well. What do we do? I mean, we’ll figure something out.” Dan tried to come up with a solution that would calm me. But nothing immediately sprung to mind.

“I’m just done. There is nothing left. I haven’t possessed a proper spoon in months.”

***

What I didn’t say was that I had this sickening feeling in the pit of my stomach that I was dying. The next day it would be followed by the squeezing sensation I would assume was an “MS hug.”

I would be wrong about that.

***

As luck would have it, I had an appointment on the calendar to see my primary physician on January 27. I can’t even tell you why I made the appointment in the first place. I’m guessing some kind of follow-up to something or other. It had been on the books long enough that I didn’t even remember scheduling it.

Dan went to the appointment with me. I was emotionally worn down for one thing. For another, I needed him to push me in a transport wheelchair to the exam room. My physical disability was so severe, I couldn’t make it on my own.

That’s the day Dr. S put “gait abnormalities, clonus, and weakness” in my chart before ordering MRIs of my brain and cervical spine.

***

I guess what I’m trying to say is that this little vacuuming challenge I completed this morning is a BFD. I’m physically capable of doing more things today than I was capable of doing even before brain surgeons and radiation oncologists started slicing and zapping me.

And though there are a lot of things I still can’t do, I don’t feel like I’m dying anymore.

 

Emily Live on Facebook

Emily Live on Facebook

On April 12, following my last radiation treatment, I went live on Facebook so that everyone who had been supporting me could watch me ring the final treatment bell in the radiation oncology waiting room at Siteman Cancer Center.

It was freaking emotional, man. The video ends abruptly because I was flooded with emotions and just started crying.

The video of this celebration is public on the Facebook page, if you’d like to retroactively celebrate the occasion with me.

Emily’s Last Radiation Treatment Celebration

post radiation bell photo opp

Post-bell group photo opp with Dan, my parents, brother, and SIL

 

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The Last Brain Tumor Radiation Treatment

The Last Brain Tumor Radiation Treatment

Brain tumor radiation treatment number 28 of 28!!! I’m in the waiting room now at Siteman Cancer Center’s radiation oncology department, and it will probably be another 30-ish minutes before I ring that final treatment bell.

Some people ring the bell with just a couple of people standing by, and some bring their entire extended families. It’s a pretty happy occasion, for the most part, because coming to the hospital every weekday for weeks at a time is grueling and being done with that is a weight off. Not just for patients, but for caregivers too.

My parents, brother, and sister-in-law have come to the hospital with Dan and I to celebrate today.

I will be broadcasting the event on Facebook Live for people who want to join in but can’t physically be in St. Louis right now. (Which is almost everyone.)

Please forgive me if I get a little emotional. I’ve been listening to other people ring the bell for weeks now when they reach their final treatment, and it always makes me well up a little. So I can only imagine how it’s going to hit me when it’s actually—finally—my turn.

Radiation therapy has been hard, and probably a little harder than it would be otherwise because I’m doing it concurrently with low-dose chemo. (It’s supposed to make the radiation work better.) So I’ve got side effects coming out of my…pores. Yeah, pores. And all of that is on top of the fact that I’m still recovering from freaking brain surgery and lying down for radiation means lying down ON. MY. SURGICAL. SCAR. Yes, they put a cushion under my head, but I’ll be honest—the cushion does absolutely nothing for me.

UPDATE: Here’s the Facebook Live archive of my big day. The video ends kind of abruptly because I start crying. It’s an emotional time. What can I say?

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Radiation Treatment #23

Radiation Treatment #23

radiation treatment 23

Radiation treatment 23 of 28. Stepping down on the steroids is greatly reducing puff levels. At least there’s something good to report.

Got a hospital T-shirt from the gift shop today. For days in the future when I may need a reminder how freakin’ boss I am.

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