Yesterday, I rang the bell.
Anyone who's experienced protracted cancer therapy, like chemo or radiation, knows what that means. It means the series of treatments has ended.
This was my first time ringing the bell. When I had chemotherapy for non-Hodgkin lymphoma years ago, I was the last person in the infusion suite (my drip was VERY slow, taking more than 6 hours). By that late hour it was just me and a weary nurse who was probably eager to get home after a long day, so I didn't know such jubilation was even an option.
Yesterday it was still just me representing my tribe, but there were other Johns Hopkins patients and staffers hanging around the radiation oncology suite. So there were a few others to cheer and applaud.
The pealing bell serves as inspiration to the other patients, reminding them there's an end in sight. I was happy to take the rubber mallet in hand.
My radiation technician Kaitlyn told me I could hit the bell with either the mallet head or the wooden handle. The handle is harder, she pointed out, so it makes a louder sound.
I went for the handle.
I've still got a lot ahead of me. After my bell-ringing, I met with Marsha, the very helpful nurse in Dr. Quon's office, who reminded me of something I'd already heard: that the side effects of radiation continue to get progressively worse for a while after treatments have ended.
A day after my final tanning session in the Weinberg Building basement, I have no reason to doubt her. The painful radiation burns (like a severe sunburn) circling my neck, as well as my continued swallowing difficulties, are an indication of that. But it's a milestone, and I'm happy to have passed it by.
Marsha gave me a long list of step-down protocols regarding medications as well as a series of exercises to begin once I'm healed up, to keep my facial and neck muscles limber.
She told me I've been a model patient, keeping careful track of the intricate instructions related to medication dosages and homecare procedures. "I didn't have to yell at you once -- and some patients I have to yell at a lot," she said with a smile. (Marsha's such a kind person, I can't imagine her yelling at anyone, but I suppose it's in the eye of the beholder.)
I told her that's no great distinction in my case. It's just that I've been a cancer patient so long, I've long since gone pro.
I won't see Dr. Quon again for six weeks. My follow-up with Dr. Mady, the surgeon, is not until September.
Once I feel a little better, I'll check back with Dr. Hillel to see what can be done to improve my voice -- such as vocal cord implant surgery or speech therapy.
One thing at a time. Healing is on the agenda just now.
In the treatment room where Marsha and I met, there's a framed collection of "Words of Wisdom from Head and Neck Cancer Survivors." Here are a few highlights:
Accept all the help you can.
This is your JOB now!!
Your caregiver is your hero.
Don't hold back the tears. They will wash you. They will cleanse you.
Strength doesn't come from what you can do. It comes from overcoming the things you thought you couldn't do.
Believe!! in your treatment plan.
Cancer teaches you not to sweat the small stuff.
Great things never came from comfort.
You'll meet some wonderful people.
PERSEVERE.
Take it from those anonymous sages of the radiation suite. They know.
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