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Finding the Light in a Heavy Journey

February 2023 Vol 9 No 1
Carrie Cefalu (Karen)
Hartland, Wisconsin
Carrie Cefalu

My cancer journey has been a blessing and not a horror story. Like a cat, I seem to have 9 lives. We all have our story to tell.

9 Lives

Much has happened in my life since 2008, when I had brain surgery for a brain aneurysm. The doctors kept monitoring me for 5 years, until it progressed and I needed surgery.

Then in 2013, I was diagnosed with stage II uterine cancer, and had surgery to remove the tumor. During the surgery, I suffered a major stroke on the operating table. The next morning, we (my surgeon, husband, and me) all noticed that the right side of my body was not cooperating with my wishes. I couldn’t even hold a fork in my hand to eat.

During my recovery, I was trying to do all the normal things with my right arm, which helped me to recuperate and get back to normal. This was my therapy, and it helped me heal.

After my uterine cancer diagnosis, I started to keep a journal of my journey. The writing helped me physically and mentally. It was like having a conversation with another person.

In 2016, I had a near-fatal accident when I flipped our pickup truck. But after all that, my health was fine for a while, until a small spot was found on my spleen by a CT scan I had to investigate some unexplained pain. The spot was very small and no one knew what it was. So my doctor monitored it for about 1.5 years, and because there were no changes, it was forgotten for a while. In 2017, I also had a ruptured Achilles tendon repaired.

Stage IV Uterine Cancer

Fast forward to mid-2019, when I started having problems that I initially thought were linked to my acid reflux (which I have had for years), and then this was followed by my losing weight. Mind you, I had extra weight to lose, so I was not too concerned about that.

But during a scheduled checkup with my internist in late 2019, who was concerned about my weight loss, she scheduled a series of tests for me, including a CT scan. The CT scan now clearly showed a tumor on my spleen. So in December 2019, my internist informed my gynecologic oncologist about my situation, who then discussed my case with the surgeon. They would then be in charge of my journey.

The tumor in my spleen was the size of a fist, and was removed with my spleen, along with a wedge from my stomach and a part of my pancreas. The surgeon did a wonderful job of informing me that while removing my spleen, he would also check to see if any other areas were touched by cancer, which he did.

At that point, my diagnosis was stage IV, or metastatic, uterine cancer. It became clear that the original uterine cancer had not been removed entirely; it is possible that a cancerous lymph node was not caught at the time, and it had then continued to grow and became metastatic cancer.

After Surgery and Chemo Side Effects

It became apparent that my stomach was not working properly after the surgery. I was only able to suck on ice chips, but I had no appetite anyway. While in the hospital, with the gastric-nasal tube going down to my stomach, I referred to myself as Snuffleupagus, from “Sesame Street.”

Because of the tube running through my nose into my stomach, I had to be disconnected from the suction receptacle on the wall whenever I had to use the bathroom or go for a walk. When I buzzed for a nurse, I always said that I needed to have my “hoover” disconnected, because it sucked the juices from my stomach. The nurses got used to my sense of humor.

After 9 days in the hospital, my husband was finally allowed to take me home.

I was then receiving chemotherapy for 4 months, till the end of July 2020, had many lab tests and many doctor visits, but I still feel I’ve been blessed! My experience about the time I received chemotherapy is not a horror story. I didn’t have nausea or vomiting that many people mention as a very hard experience when receiving chemotherapy.

But don’t get me wrong: I had a lot of “other issues” during the chemotherapy, including extreme exhaustion, neuropathy in my hands and feet, constipation, and diarrhea. But I was spared some of the horrors.

At the end of 2021, I visited my dentist, because of sensitivity in my teeth. The dentist ordered a bone density test, which revealed that I had osteopenia (weakening bones), possibly because the chemo sucked calcium from my body, resulting in osteopenia and dental problems. I also continue to lose hair, now that it has grown back.

My Choice to Stay Positive

With my chemo completed, I began feeling that I’m on vacation. I don’t have to be at the clinic every week. Yippee!

Throughout this cancer journey, I’ve tried to keep a positive outlook. My husband and I tried to “make light” of some issues we had to deal with; otherwise we most likely would have been crying, but that’s not the way I want to live my life.

It is how I’m reacting to a truly bad diagnosis. I figured that it was my choice how to react; this is what I choose. People have to be comfortable with their own situation.

Some people think we’re crazy for making light of such a serious issue, but this is how my husband and I have handled this journey. I still have not cried during this entire journey. Because cancer is so serious, we try to find some light in this.

Before starting chemo and losing my hair, I started a list of “All Things Positive about Chemotherapy.” Here are some items on my list:

  • No more shedding of my long hair
  • Save money on shampoo and cream rinse
  • No more shaving of legs and armpits
  • Save money on mascara
  • Side benefit: keeping weight down if I’m sick
  • My husband won’t have to hold my long hair back while I’m heaving my guts out (didn’t happen)
  • No tweezing of eyebrows.

A Family Affair

Within a week of starting chemo, I had our family cut my long hair, and I decided to make this a celebration with our family—my husband, sister, son, and daughters’ families, including our 5 grandboys.

Just after I started chemo treatments, when we were with everyone, I made enough ponytails on my head so they could all cut off a piece of my hair. It was a nice way for me to include everybody and make them a part of this family journey. After all, cancer touches the entire family.

My husband and I even made a bet as to how my head would look once I lost all my hair. Would the shape of my head be smooth, or have bumpy waves on the back of my skull? I won: it was smooth. I even took a picture with our daughter’s cabbage patch look-a-like doll. I knew it was in the basement somewhere.

A Box in My Head

My largest concern is that I would become paranoid about the cancer coming back. I’ve joined our cancer support groups at the clinic where I have received treatment. I still have my port in place, to make it easier for my lab tests and injections for my PET scans. Currently, I am on a 4-month schedule for these scans; so far so good.

I’ve always operated as if I have a little box in the back of my head. I put my problems in there, and then shut the drawer. Do I know what’s in the box? Yes, but I truly try not to think about it. Thinking bad thoughts does not help our healing.

I’m still writing in my cancer journals. This keeps me connected to myself. It helps to clear my mind. I’m the only one who ever sees what is written in the books. To me it is a cathartic experience.

Each day that I wake up and get out of bed is a blessing from God. Whatever higher power you believe in, it helps to hold on to thankful thoughts. Each day is another new day. Stay positive!

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