Isn’t Once enough?

Ten years. I’d been in remission ten years! My oncologist rejoiced with me at my yearly checkup when the bloodwork came back clear. Then she smiled. “I don’t use the word ‘cure’ because there’s always a chance your lymphoma could come back, but after ten years, I’m pretty optimistic it won’t.”

That was the first of May 2015. The last week of May I started having strange pains in my abdomen. They felt like menstrual cramps, even though I’d had a total hysterectomy years ago. By the first of June, they suddenly got worse so I went to the ER, thinking it might be appendicitis. The doctor ordered a CT scan of my abdomen.

While waiting for the results, I wondered if I could heal from an appendectomy in a week’s time so I could still accompany my husband on a business trip. After his conference, we’d planned to see both our sons and their families. Our newest grandchild was only three months old, and I’d only seen him once.

The ER doctor and the nurse walked into the room with serious faces. “All the lymph nodes in your abdomen are enlarged,” he said solemnly. The nurse came closer to catch me if I fainted. I didn’t, but I was stunned. I struggled to stay calm and clear-headed. When I had lymphoma in my neck ten years ago, it hadn’t hurt. But what else but lymphoma could cause lymph nodes to enlarge so quickly? The doctor frowned. “You’re awfully calm about this.”

“What good will it do to get upset?” I shrugged to hide my feelings. “I’ve always known the lymphoma could come back.” Of course, I was upset! I wanted to scream! I felt betrayed by my own body. It was especially cruel that it happened so soon after having perfect bloodwork.

I wouldn’t see the oncologist for almost three more weeks. My husband and I were prepared to hear the worst: “It’s stage four and all that can be done is pain management.”

What scared me most was how fast it was growing. The pain increased daily while waiting for scans and appointments to be scheduled. I had to up the doses of opiates to keep it manageable. That’s how excruciating the pain had become in such a short time. It was as bad as end-stage labor with no break between contractions.

As a woman of faith, I wasn’t afraid to die, but I felt an urgent need to get my affairs in order. I wrote my obituary. I crafted letters to my husband, sons, daughters-in-law, and the three grandbabies. It broke my heart they were all so young, they would have no memories of me.

My husband cancelled his business trip, but we did go visit our sons. A few hours before we were scheduled to fly back from Kansas City, the pain doubled again, and I had to go to the ER. It took two shots of “morphine light” to manage it enough so I could board the plane — in a wheelchair. I hugged our children and grandchildren as if saying goodbye forever.

I felt I had fallen into an episode of the Twilight Zone

I had completed a fantasy novel and was already sending it to agents and publishers. I felt so strongly that I was going to die, I found a pre-made cover and self-published it as a goodbye gift to my family and friends.

Finally, we met with the oncologist. I’d never heard her cuss before that day’s visit, but she did because she was angry the lymphoma had returned when the month before we’d celebrated ten years’ remission. She believed it was only stage three, but I would have to get a biopsy to determine which type of lymphoma so she could select the correct chemotherapy.

My pain continued to increase daily, so the oncologist prescribed a stronger opiate. I tried to take the smallest dose, but soon had to increase it and needed a refill. Even though I was taking it as prescribed, the pharmacist refused to refill it, saying I wasn’t supposed to take that much. Meanwhile, one of the chemo nurses was arm-wrestling the insurance company to expedite a pain patch so I wouldn’t have to take so much of the opiate. I felt as if I’d fallen into an episode of the Twilight Zone.

To complicate matters, the radiologist, who inserted my port catheter, refused to do the biopsy. Since the lymph nodes were wrapped around my abdominal aorta, he said it was “too risky.” The only local surgeon we could find kept asking if there were any other lymph nodes he could biopsy instead. That only added to my anxiety!

Following the biopsy on July 3, I had to stay overnight at the hospital. I had trouble convincing the nurses I was in terrible pain. Finally, a light bulb went on in my head, and I said, “It’s not from the surgical incision; it’s the cancer pain.” Those were the magic words! If I’d told the pharmacist my cancer pain was increasing daily, perhaps he wouldn’t have been so dismissive of my need for a refill.

Based on my experience ten years before, I knew that as soon as the chemo touched the lymphoma, the lymph nodes would shrink, and the pain would go away. When I called the cancer doctor to get an appointment, the receptionist said, “She’s going on vacation for two weeks.”

I felt like I was going to die and nobody cared! I finally lost it. “If I have to wait that long, you might as well shoot me, because this pain is going to kill me.”

The receptionist put me on hold and returned in less than a minute. “Dr. B can squeeze you in on Thursday morning before her usual appointment times.”

Chemo began the following week. As happened before, almost immediately the enlarged lymph nodes began to contract as if they were writhing in agony. Within two days I was able to stop all the pain meds.

Now that I was out of the fog of pain and opiates, I could focus on fighting the cancer. After six weeks of living in a nightmare of agony, dealing with the side effects of chemo felt easy in comparison. I never thought I’d use “easy” and “chemo” in the same sentence!

There’s something especially terrifying about an unexpected cancer recurrence, when to all indications it was gone forever. You can’t help but wonder, “Why me? Isn’t once enough?” But the saying, “What doesn’t kill you, makes you stronger” has merit. Having gone through it all over again, and once again defeated the beast, I can attest to the fact it is true.

I have been back in remission for several years, making memories with my grandchildren. Surviving cancer twice has inspired me to help others going through the same trial. It’s unfair, unwanted, and unexpected, but it is possible to get through it... again. If you are living with a cancer recurrence and would like to talk to someone, leave your information below. Someone from our team would be happy to listen. Because you’re not alone in this.

Photo Credit Ken Treloar

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