Jeannie Hopper-An Inspiration To Us All

wbcgaruss

Here is a story for us to use as inspiration and remember we can do this no matter the challenge. It is a story of a lady that faced stage 4 tongue cancer. She had a great care team but there is a lot involved in her treatment and recovery as would be expected. Here she shares her story to help and inspire others from her darkest moments.

("At one point, I had a complete meltdown")

April 03, 2019

Half of my tongue is gone, but I couldn’t be happier

BY Jeannie Hopper

I’ve had four of my back teeth removed, the floor of my mouth rebuilt and more than half of my tongue replaced with an arm muscle. But other than a slight lisp and some scars on my neck and forearm, there are no obvious signs that I once had stage IV squamous cell carcinoma, a type of oral cancer.

Recovery from my oral cancer treatment was not fun. It was hard and scary and painful. But it was also worth it.

That’s why I want to share my story both here and through myCancerConnection, MD Anderson’s one-on-one cancer support community. I want other people facing a similar diagnosis — particularly young mothers — to see that there’s a bright and happy light at the end of that long, dark, uncomfortable tunnel.

My oral cancer symptoms

My first symptom of oral cancer was a small, white patch on the underside of my tongue. It randomly appeared in 2011, and was very sensitive and painful. Since I was only about six weeks away from delivering my second child, I assumed it was one of the million weird things that can go on in your body during pregnancy. 

When it didn’t go away in a week or two, I mentioned it to my OB-GYN. She said it wasn’t pregnancy-related and sent me to a dentist, who said it wasn’t a normal mouth sore and sent me to an oral surgeon. The oral surgeon did a biopsy, which came back negative. He said it was a callus and would resolve on its own.

I delivered my daughter a few weeks later and lived with that patch on my tongue for the next five years. It only bothered me every few months, so I ignored it.

My oral cancer diagnosis

In May 2016, the patch suddenly started hurting. It also seemed to be getting bigger. My general practitioner sent me to an oral surgeon, who did another biopsy. The results showed nothing, but he told me the patch was “moderate dysplasia,” a pre-cancerous condition. Because my tongue had become so painful, he suspected it was already turning into cancer and sent me to an ENT.

The ENT did a more comprehensive biopsy while I was under anesthesia. He removed three pieces of my tongue, from much deeper down in my throat. When I woke up, he told me that I had squamous cell carcinoma of the tongue, a type of oral cancer.

I wish I could say I was stoic or brave, but the truth is, I was terrified. After being reassured five years earlier that I was fine, now I had cancer, and it was stage IV.

Traveling to MD Anderson for the best oral cancer treatment

The ENT said MD Anderson was the best place for treating squamous cell carcinoma, and my online research made clear that MD Anderson has the world’s best Head and Neck Center. But I didn’t think I could travel back and forth to Houston. My husband and I had just moved our family to northern Mississippi for a new job, and I was worried about how we’d manage.

My parents and siblings told me to go. They’d take care of the kids, even though they lived in four different states. I made an appointment.

My oral cancer treatment

At MD Anderson, my world-renowned oncologists recommended three rounds of induction chemotherapy, followed by surgery and radiation combined with more chemotherapy.

Dr. Randal Weber removed the tumor from my tongue on Oct. 17, 2016. Then, Dr. Alexander Mericli rebuilt my tongue and the floor of my mouth using part of my left forearm muscle. My medical oncologist, Dr. Merrill Kies (now retired), was in charge of my chemotherapy. And Dr. David Rosenthal was my radiation oncologist.

The hardest part of recovery: learning to eat with an ‘arm-tongue’

My new “arm-tongue” felt like a foreign object in my mouth when I woke up from surgery. It was so swollen that it stuck out for about two weeks. I couldn’t close my mouth completely and had to use a bite stick to keep from damaging it accidentally.

Even after I could close my mouth, speaking was hard for the first few days. But it came back a lot faster than I thought it would. For one thing, I had an entire team of specialists helping me, including speech pathologists, physical therapists, dentists and dieticians. I also did a lot of swallowing, neck and tongue exercises daily, which helped a great deal.

The hardest part of my recovery was learning how to eat again. I started with liquids and pudding-type food, then soft foods and so on. But I had to pass a swallowing test first, which I wasn’t able to do until six weeks after the surgery. I continued to get most of my nutrition through a PEG tube inserted in my stomach. I kept it in for about seven months, until I could maintain my weight for two weeks eating only by mouth.

I’m used to my new tongue now, so I can eat just fine, though it’s not always pretty. I just have to take really small bites, drink liquids to help me swallow dry things and only chew on the side of my mouth that has teeth and a “real” tongue. My tongue is tethered to the bottom of my jaw now, too, so I can’t stick it out. But I’m used to it, so it doesn’t really hold me back. I teach classes and give huge presentations at work. It’s not very noticeable.

Making the best of my new normal

I lost most of my taste buds through surgery and radiation, so now I can only taste really strong sweet or sour flavors. That makes it hard to get excited about food.

But I’ve been cancer-free since finishing treatment in December 2016. So, there is, indeed, a light at the end of the tunnel. My goal now is to live the best life possible. I’m grateful to have the opportunity.

I live more in the moment now and spend more time with my family. I also try to remember that life takes its own path sometimes, and it’s not our fault if it’s not what we planned. You can get tongue cancer even if you’ve never smoked. You can have half your tongue and the floor of your mouth removed and replaced with an arm muscle (what?!) and yet still eat, speak and be awesome. 

I will always have a lisp and issues with swallowing. I will always eat best when no one is looking. I will never kiss my husband in quite the same way again. And I will never look in the mirror and see the person I expect to. But in spite of all that, I am glad to be alive. I’m proud I made it, elated with my life and happy to be where I am today.

My advice to other patients: Focus on today

BY Jeannie Hopper

I am a strong, athletic, never-been-sick type of person. I am also very career-driven. So when I was diagnosed with stage IV squamous cell carcinoma of the tongue, a type of oral cancer, in 2016, I thought it’d be no problem. I’d undergo treatment and keep working while I was doing it.

Boy, was I wrong. That might be true for some people, but it sure wasn’t for me. I was hospitalized for a week after my very first chemotherapy treatment. I had to be flown back to Houston from Mississippi so my care team could see me personally. I was dehydrated and a total mess. At one point, I had a complete meltdown, and one of the nurses had to sedate me to keep me from yelling. (So embarrassing!)

But then, she called in an MD Anderson social work counselor, Djuana Fomby, who helped me put it all in perspective. The day I met with Fomby changed my entire outlook.

My biggest challenge: relinquishing control

I was really mad when I was admitted to the hospital. I thought I’d failed because I wasn’t strong enough. I’d heard all these stories about people who were still working while on chemotherapy and felt totally fine. That was not my experience.

I could barely move and was really weak. I also had to get a PEG tube inserted much sooner than I expected to, because the chemotherapy was attacking the tumor in my mouth, which was affecting the way my tongue and throat functioned. Suddenly, I couldn’t swallow anything, so eating and drinking were not possible. That felt like another way I’d failed.

Nothing seemed to be in my control anymore, and I was panicking. But the night I lost it, Fomby was a lifesaver. She helped me stop worrying about bills and kids and work and surgery and radiation and mowing the lawn and Jeremy’s spelling test — basically, everything I was mentally piling on myself. She helped me focus on today and understand that I had to let everything else go and take my cancer treatment one day at a time. Because the rest of it wouldn’t matter, if I didn’t get through this first.

So, I did that. I put on blinders and focused on chemotherapy. No sense in worrying about surgery or radiation yet. Those were still months away. I put all my crazy, overachieving energy into fighting cancer while in treatment, knowing I’d eventually be able to resume all the stuff I really wanted to be doing instead. Cancer became my full-time job. I still had bad days, of course, but because of my attitude adjustment, they became much less frequent and more manageable.

What I’ve learned from undergoing oral cancer treatment

Surviving cancer does not magically make me a better or more profound person. But I do feel like my family is stronger now and my career is more successful because of my experience at MD Anderson.

It was there that I learned I could not do it alone. That took me a long time (and the help of my MD Anderson social work counselor) to finally admit. But I can let people in and trust my health care team, even when the things they tell you seem impossible (a working tongue made out of arm?!).

I am an incredibly independent and driven person, but it was not until I accepted my situation and permitted others to help me that I was finally able to stop stressing myself out and begin the business of healing. So, control what you can and trust that the rest will work itself out. It’s OK to lean on others.

Links https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

https://www.mdanderson.org/cancerwise.dir.html/author/Jeannie%20Hopper

katlou

First of all I just want to say that I am so sorry to hear about what happened to Jeannie Hopper but also very glad that she is doing well. I feel the need to share my story (which I have shared before on this forum) because I also had a white patch on the underside of my tongue that turned into cancer.

My dentist found this white patch on the underside of my tongue so I went to an ENT for a biopsy which came back negative for cancer. Over several years I had two more biopsies done which were also negative for cancer and after the last biopsy my ENT said it was nothing to worry about and that I didn't need to come back. My gut was telling me something different. I waited about a year and a half and went to a different ENT and asked that the entire white patch be removed rather than just a biopsy on a portion of it which he agreed to do. The test results on that were a very small stage 1 cancer. I was very fortunate that this was caught so early because the only other treatment I had to have was a wide resection to be sure I had sufficient clear margins around the cancer. I had no chemo or radiation. It is just over 5 years for me and there has been no recurrence.

What I am trying to say is that the earlier you catch this the better off you are and these white patches can turn into cancer. If I were to get a white patch (or any sore) on my tongue again I would request the entire thing to be removed rather than just biopsies on portions of the patch. Maybe the white patch was cancer free at first but a small portion of it did turn into cancer later. Listen to your gut and if you don't agree with what the first doctor says or does get another opinion.

wbcgaruss

katlou, thanks for sharing your story again and for your wise insight into your situation and advice for others in this situation to just have tongue discolorization removed. Above all follow your gut feeling and if something doesn't seem right to you don't stop pursuing a solution till you are satisfied. I am so thankful your story had a happy ending and a lesson for others. I hope that someone reading this is helped by it or may have a family member or friend or co-worker that complains about a discolorization on their tongue and they will remember they saw your story here and urge them to get care right away.

Wishing You the Best

Take Care, God Bless-Russ

katlou

Thank you, Russ. I realize my cancer situation is very minor compared to most on this forum but I continue to read posts and want to help where I can. I could have very easily been in a situation with a much more advanced cancer had I listened to my first ENT and stopped having the white patch biopsied/removed so I just want to encourage people to get other opinions if they continue to be concerned until they are satisfied that they are okay.