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Maureen’s Story (Carcinoid Tumor, Breast Cancer)

Maureens Story Carcinoid Cancer and Breast CancerHello! My name is Maureen Rapier-Kufa. I am otherwise known as “Thelma”! My wife, Kris Kufa-Rapier, and I have been called “Thelma and Louise” for several years. This is our story.

We love to road trip. We love Illinois wine. Folks saw us at Uncork Urbana a month or so ago, our first road trip in months, and began asking questions when they saw Thelma sporting her chic Miami neck brace. “Is this what happened when y’all drove off that cliff?” We joked that Louise was smart to have her seat belt on at the end of that trip. But we reckon it’s time to fill you in. Hold on, it’s gonna be a bumpy ride!

As y’all know, this past winter was one for the record books. Snow, Snow, SNOW! So when Thelma started getting some pains in her neck early this spring, she figured it was just arthritis from an old injury she got as a teen, irritated by the cold. It was time to check in with the doctor when it got so bad she couldn’t sleep.

An MRI showed Thelma had a tumor in her cervical spine (back of her neck, in layman’s terms) that was pressing on her spinal cord. Surgery would keep her from being paralyzed or dying. Hmmmm… too many wineries and road trips on our agenda. Let’s operate!

The neurosurgeon set the date for Friday, May 9. Never one to do things the “normal” way, Thelma got up on Tuesday, May 6th, having a difficult time walking and using her hands. When the pain was so bad that evening that she “Wouldn’t wish it on my worst enemy,” and our son had to practically carry her to the Laguna Blue SUV, Louise knew Thelma couldn’t wait till Friday.

It doesn’t seem to matter what hospital you go to in an emergency. The staff doesn’t seem to worry as much as you hope. When we arrived, the waiting room was filled. One lady said she’d been there for 9 hours! The only staff to speak to was a security guard who informed Louise they took people in order of importance with trauma as the first seen. Louise made several pleas on Thelma’s behalf because she could see the pain in Thelma’s eyes. Two and a half hours later, Thelma’s name was called. Louise wheeled Thelma to an exam room where we could at least get some comfort from the pain.

We really weren’t prepared for what happened next. In between numerous staff members wanting Thelma to rate her pain (always a resounding 10, on a 1-to-10 scale), Thelma discovered she could no longer move her arms and legs. She was paralyzed. The next thing they knew, the monitors started beeping loudly, and Louise saw Thelma gasp for breath. The nurse yelled out to give her a steroid STAT and then yelled to Louise, “Remind her to breathe. I’m going for the surgeon!” That’s when Louise saw the oxygen levels drop and lights started flashing. Yep, Thelma was in a bad way, and it was all going to hell in a handbasket!

Thelma was told she was now “critically urgent” and was being rushed into emergency surgery two days early. Dr. Beejal Amin at Loyola assured us he would take care of this, as he comforted Louise with a gentle pat on the shoulder. Then it was Go-Time!

Poor Louise, with her short little legs, had to hold on for dear life while the hospital staff flew Thelma’s gurney down the hallways from the ER to the operating room. Thelma was holding tightly to Louise’s hand. At one point Louise got her bag caught on a door and flew back like she was bungee jumping!

Louise had a tough wait ahead of her since the surgery was scheduled to last about six hours. Our dear friend, Pastor Barbara Lohrbach, came to keep Louise company and comfort her spirit. Dr. Amin’s staff gave them hourly reports about Thelma. It was five hours later when Louise was told that Thelma was now in recovery.

Thelma woke up in recovery to hear a nurse say, “Look who’s awake… and she’s smiling!” Yes, Thelma was smiling. She knew she was ALIVE!

A few hours later, Thelma was moved to the Neurological Intensive Care Unit. Louise and Pastor Barbara could finally see her after waiting patiently for several hours.

Neuro checks were done throughout the night and the next couple days checking mobility in hands and feet. Push, pull, wiggle, raise. She did it all! Thelma was still on the ventilator just to be sure she could breathe. Again Thelma beamed from ear to ear when one of the doctors declared her “a miraculous recovery” only a day and a half after surgery. With rehab, doctors shared, Thelma should be practically as good as new – well, as good as a girl can get who has seen as many birthdays as Thelma has seen!

The tumor biopsy showed it was carcinoid (or neuroendrocrine) cancer, the same slow-growing cancer Thelma has had in her abdomen for 17 years. Thelma had a eight-inch scar running from just below the crown of her head to the base of her neck which had been closed with 35 staples. She now has a plate, a rod, and three screws in her neck to make up for three vertebrae that had to be removed (just call her Bionic Thelma!). And she has a neck brace to wear for 10 weeks or more. But she can move, and she is alive!

After having the ventilator removed and other unpleasant tubes they give you during surgery, a move to the regular neuro floor of the hospital was a welcome relief. Some of our young’uns visited on Mother’s Day, bearing spring flowers. The kids were a sight for sore eyes and did wonders to lift our spirits! We had fun taking a ‘selfie’ to try to rival the Oscar Twitter-crasher.

It wasn’t long into our hospital stay before we were told the doctors found evidence of another tumor in Thelma’s right breast which was found during the PET scan the day before neurosurgery. A bedside biopsy done about a week after the big surgery showed the tumor was a malignancy that needed to be removed soon. Lots of tears flowed when we heard that!

Although Thelma was wiggling fingers and moving her arms and legs, she had lost much of her strength. Walking was difficult, at best. Her hands were clumsy, and it was hard to grasp anything like a fork or toothbrush. So it was decided that Thelma required in-patient rehab before she could go home.

Six days after surgery, she was moved to the Rehab Unit. Yes, she could wear “street clothes”, but she’d pay the price. Three to four hours of occupational therapy, everyday living therapy, recreational therapy and physical therapy was written on her board every day. Hard work would be required to be released. If no one would be at home to assist Thelma, she would be moved to a rehab facility for further therapy. That was when Louise decided she’d take an unpaid leave of absence so Thelma could go home.

Thelma started on the Rehab Unit using either a walker or wheelchair to get anywhere. It was strange to realize how much goes into walking. Vision is a huge part of balancing, for instance; Thelma found she couldn’t close her eyes while standing without falling. Walking also suddenly required thinking – heel, toe, heel, toe… swing your arms for balance… ignore other movements in the hall. Just a slight distraction from walking was enough to make her teeter. But after ten days of doing what she had to do, Thelma was going home without any apparatus. The discharge order was to get some more physical therapy for strengthening and to take some time to heal a little more before the breast surgery.

One tumor down and one to go!

A lumpectomy was scheduled for June 3rd, less than a month after the last surgery. The surgeon was able to remove the 4cc breast tumor completely. It was diagnosed as a metaplastic carcinoma, an aggressive breast cancer. It was no surprise to us when the doctor said it is extremely rare and less than 1% of breast cancers are this type. In fact, this cancer is so rare that there is not much data about it. And, like carcinoid cancer, it does not respond to chemotherapy. A biopsy of the tumor confirmed it was also high grade and triple negative. Yep, that’s par for the course for Thelma!

Once again Thelma was told to heal for a few days after the lumpectomy before radiation on her cervical spine would begin. A couple more trips to the hospital for a CT scan and an MRI, then a special mask was made in preparation for the specialized treatment.

The mask is made of plastic that is heated up, then placed on the patient so it molds specifically for the individualized treatment. It feels a little like a nice, warm facial at first. Then you realize you can’t move anything, including your eyelids. It’s definitely not for the claustrophobic!

So Thelma had a week’s worth of radiation treatments for the spinal tumor that couldn’t be removed because it stubbornly wrapped around a vertebral artery. Side effects were minimal. Just some hair loss at the nape of the neck (where she was shaved for surgery, so not much to lose), a little bit of sore throat, and tiredness.

Those treatments were to be followed by six weeks of five-days-a-week radiation for the breast cancer. And in between all of those treatments would be out-patient physical therapy to build up strength lost before the cervical surgery. Using the stairs, typing with both hands, and lifting arms above shoulder height would hopefully will be simple tasks again!

Radiation for the breast cancer was delayed a few weeks due to Thelma getting ill from an octreotide shot. This is a shot she has been getting monthly for the past 3 years for the carcinoid cancer. She came to find out her bowel system was “over-stimulated” due to meds they give you in the hospital to help you go, on top of the octreotide shot. Her bloodwork also showed low potassium, so she had to go in for an IV drip to get her potassium levels back up.

Right now, Thelma is in week 4 of her radiation for the breast cancer. She comes home and sleeps nearly 2-3 hours. Somehow it just wears her out. Other than a new rash on her chest and right breast, she doesn’t have too many other side effects so far and feels lucky! Because she cannot move her neck or turn her head to get it out of the way during radiation, she also has a sore throat and a very hoarse-sounding voice. Of course, the bad thing is even when she has a good day and feels good, just doing minor tasks makes her shoulders and neck very stiff due to the wonderful hardware in her neck. That causes pain, and the best way to get relief is lying down. So, she will lay down for an hour or so and get right back up! Bionic Thelma is hard to keep down!

Something we never lost through this journey was our sense of humor. With Thelma on a ventilator, we had a fun time using sign language for a couple days! Thelma played a lot of games of charades with Louise (and did plenty of eye-rolling when Louise just didn’t understand). Louise thought getting Thelma to blink her eyes to answer yes and no questions would be a good idea. Through sign language, one blink would be “no”; two blinks , “yes”. Louise asked a yes/no question. Thelma blinked twice. “Hmmm…” Louise asked, “Is that yes or no?” Thelma just rolled her eyes as they laughed.

When Thelma was on the ventilator, she thought her cough sounded like a seal barking. Louise didn’t find the humor, but Thelma did!

It wasn’t long before Louise told Thelma that her incision was longer than planned. And that meant Thelma had been shaved from the nape of her neck to the top of her incision. Her mission was to find out what doctor cut her hair with the intent to tell them, “Don’t quit your day job!”

Louise told Thelma that there was enough hair to cover her scar. But she added, “You’d better stay out of the wind. Your hair will go blowing like an old man with a bad comb-over!”

One of the nurses told us about the scare he had finding a “dead hamster” in Thelma’s medical file! The doctor kept the hair he’d shaved off of Thelma’s head and put it in a baggie for safe-keeping! Nurse Steve explained it was some kind of hospital policy that hair is kept for the patient’s discretion. Steve said it just about scared the bejeebers out of him! We laughed so hard we cried!

Although it wasn’t funny at the time, we laugh now: Thelma had discovered while in the emergency room that she was paralyzed. She knew she was going to get sick again, so Louise told the nurse. The nurse grabbed a basin and tried to hand it to Thelma. Ummm… hello?! Arms don’t work! Louise held it instead, thank heaven.

So what else is in store for us? Well, in between the poking and prodding and radiating of body parts till Thelma glows in the dark, we’re hoping to road trip to more places than the hospital and doctors’ visits! You better believe we’re gonna find a way to take a few road trips to sample our Illinois wines! We love to meet new people and hear stories of friendship from those we meet along the way.

Yep! We’re gonna keep on moving as long as we can. After all, it’s not how many times you get knocked down – it’s how many times you get back up. You can count on Thelma and Louise to “Fight like a Girl, Drink like a Lady.”

Maureen
Illinois
Submitted 09/06/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. Hey 🙂
    I am a 16 year old girl from Kansas City, MO. I go to North Kansas City High School and am currently on the Varsity Volleyball team. Each home game we decorate and throw a mini volleyball out to the crowd. I have decided that throughout the rest of this year and next year I was going to dedicate each ball to a female currently fighting cancer. I read your story and was very inspired by it. I am going to dedicate my ball for tomorrows game to you and hope that it inspires many more as well.

  2. Y’all are precious!

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