It’s been a long and often scary five months away, but Dining with Denise is back
Since graduating from college and entering the working world nearly 28 years ago, the longest I’ve been off work is 12 weeks — back in 2005 after the birth of my daughter.
As I write this today, I’m back at work after nearly five months away. I signed off just before my surgery for tongue cancer in mid-November, and I’ve been gone ever since. What a strange ride it’s been.
I shared in a December post on the Dining with Denise Facebook page about the reason I was away from work: In October, I was diagnosed with squamous cell carcinoma of the tongue, aka tongue cancer. It started as a painful little bump on the right side of my tongue that never went away. In October, I finally got a biopsy and then a scary diagnosis.
Surgery was the first step, and that happened on Nov. 17 at KU Medical Center. I was lucky in that I lost only a small section of my tongue on the left side and that the reports from the surgery were good. The cancer had not spread to my lymph nodes and was removed with “clear margins.” But there was one marker in my surgical pathology that made me a possible candidate for radiation.
My doctors at KU Med were on the fence about whether I should or shouldn’t have radiation, so — at my sister’s insistence — I went to MD Anderson in Houston for a second opinion. MD Anderson is considered one of if not the best cancer treatment centers in the country, so when the doctors there told me that I should go forward with radiation, I took their advice. Thankfully, I was able to stay at a friend’s apartment in downtown Houston, and I started six weeks of radiation on Jan. 3.
Radiation in your mouth is beyond brutal, but I did pretty well throughout treatment. I had a different friend or relative come stay with me every week I was there, and they kept my spirits up and forced me to do the exercising and eating required to keep me from losing my ability to swallow or worse. The doctors were impressed with how well I was able to continue eating, which I attributed to my love of food. I wasn’t going down easily.
My last treatment in Houston was on Feb. 10, when I “banged the gong,” something radiation patients get to do to celebrate the end. My gong banging was so enthusiastic and loud that I got a small round of applause from the people in the adjoining waiting room when I exited. I came home the following week.
The seven weeks since I’ve been home have probably been more challenging than the duration of treatment. The side effects of radiation hit their peak about two weeks after it’s over, and then it takes a long time for the tongue to get back to normal. I’m still experiencing lots of pain when I eat, and though my taste buds fully returned a few weeks ago (something that made me want to go back to Houston and re-bang that gong) I can’t really handle most foods yet. Anything spicy, tomato-based, citrus-y or crusty or hard-edged causes extreme pain. Any alcoholic beverage would set my mouth on fire, so wine is out — and I really like wine.
Lately, my diet consists of lots of things I rarely ate before radiation: pancakes, Jell-O, mac and cheese and other boring, soft stuff. I’ve also become dangerously addicted to boba tea (Thai milk tea with 50% sweetness and double the boba, please) because it feels so good in my mouth. I may need a boba intervention.
Also, my speech is not what it once was. I sometimes have a little lisp, and I have trouble with double n’s, double d’s and double t’s. Sometimes it hurts to talk. Sometimes it’s fine. All of this will get better with time, but I am impatient, especially on this topic.
After my post in December, I heard from at least a dozen people in Wichita who have been through nearly the exact same diagnosis, surgery and radiation that I have. They’ve become my online friends and cheerleaders. I have a goal once I feel better to get us all together in person and maybe form a little Wichita support group. But first, I want to get a little more back to normal. I will feel better, these cancer veterans promise me, but it takes time. Months for some things. Possibly years for others.
Now that I’ve had a successful surgery and radiation, my prognosis is good. There’s an excellent chance the cancer will not return, but I have to go to Houston every two months for scans to make sure. My first return appointment is at the beginning of May, and I’m already developing that “scanxiety” I’ve heard so much about. But I’m trying to stay positive, and being back at work is going to be a great distraction. I already feel a little better, and as I type this, I’ve only been back at work for a few hours.
If you’re interested in more details about my radiation journey, I kept a daily journal intended to keep my friends and family updated while I was in Houston. But many Eagle readers and Wichitans I’d never met also found it and cheered me on every day. Their support was invaluable, and I found it quite touching. You can find that blog, titled “Denise, irradiated” on Facebook at at https://www.facebook.com/deniseirradiated
In the meantime, If you or a loved one is diagnosed with tongue or any other type of cancer and need to talk, please, reach out. The scariest time of a cancer journey is right after diagnosis, I found. I wanted to talk to people who’d been through tongue cancer, but I had no idea where to find them. I’ve found them now, and they’ve become very important to me. I’m still grieving for a young Wichita woman whose mother reached out to me on Facebook and wanted to hook me up with her daughter when I was home and well so that we could share war stories and maybe work together on forming that tongue cancer support group. I was looking forward to it, but unfortunately, she lost her battle with cancer a few weeks ago, and I never got to meet her.
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I feel lucky in many ways. McClatchy and The Wichita Eagle treated me extremely well throughout my absence. So did my editor, Michael Roehrman, and my colleague Carrie Rengers, who stayed on top of the restaurant beat while I was out. It was a big ask since she has so many business stories to cover already, and I think working double drove her to near exhaustion. But she kept our readers informed and the Dining with Denise blog populated with news, and I deeply appreciate it.
I’m ready to get back to it, so please, if you hear of any restaurant news — openings, closings, changes, places that everyone needs to try — please let me know. And if you have any questions about the Wichita restaurant scene, send them my way. You can reach me at dneil@wichitaeagle.com.
This journey has been scary and painful, and one I do not recommend. I’m among a small but growing group of “younger” people who got tongue cancer for no reason: I never smoked or drank heavily or participated in any tobacco-related activities. If you do, I highly recommend you find a way to stop. Tongue cancer is really, really no fun.
Despite all of that, the last five months have also been kind of uplifting. I truly can’t believe how much time and effort my close friends and family put into getting me through this. I was touched by how many readers and restaurant owners and people I never met sent me encouraging messages, offered support, even sent gifts. I have so many thank-you notes to write, the postage might just break the bank.
Thanks, Dining with Denise readers, for your patience the last five months. It’s good to be back.
This story was originally published April 3, 2023 at 2:25 PM.
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