When Cancer Comes. Part Two
It was such a relief to finally have a diagnosis. To know what we were dealing with and what needed to be done to address it. It was still scary, but we took one day at a time, learning all we could about testicular cancer. Levi handled it all with such grace and quiet strength. He had a very logical, methodical, and unemotional approach and did what he needed to do. I never saw him cry, or wallow in self-pity. Ever. It was incredible to watch him interact with the hospital staff, always polite and thoughtful, not wanting to inconvenience anyone despite his discomfort. I had no idea what my son was made of.
While Levi was in the hospital for his orchiectomy, we met with his oncologist from Hillman Cancer Center. The very first question he asked me was - “Was your son born with an undescended testicle?” I had to stop and think for a second. “Yes. He was.” The doctor nodded like he already knew what my answer would be and said, “They all are.” Apparently, in addition to being a tall, thin, white, young male - all risk factors for testicular cancer - being born with an undescended testicle increased that risk 10 fold! What?! According to the data, cryptorchidism affects 30% of boys born prematurely and 4% born at term. Levi was part of this 4%. The testicle did finally descend on its own by the time he was around 4 months old. The doctor explained that the testes are on the outside of the body for a reason. They need to be cooler. Because his testicle spent too much time in his abdomen, it got too warm and the cells were damaged. That is a very simplified explanation, but for more information see here:
If your son was born with this condition, please be sure he is doing frequent self-exams at the onset of puberty. Testicular cancer is a young man’s disease, with the majority of cases affecting men between the ages of 15-34. Levi was 19.
At one point, I had an interesting conversation with an oncologist about our ability as a society to discuss testicular cancer, the importance of regular self-exams, education, and early detection. She explained that we have no problem discussing breast cancer and educating our young women- even in high school- about the importance of self-exams. But no one wants to talk to the boys. Even though the data clearly shows that far more young men are at risk and more likely to develop testicular cancer than their female counterparts are to develop breast cancer. We need to be talking to our young men! If this story can help bring awareness and help other mothers educate their sons, then I am more than happy to tell it.
Shortly after Levi had his orchiectomy, he had a port surgically inserted in his chest that would deliver the chemo directly into the vein at his heart. We also visited the fertility clinic at Magee Hospital so that his sperm could be harvested and frozen prior to the onset of chemo, just in case his numbers wouldn’t rebound afterwards. Chemo was to start 4 days later at Hillman. It was supposed to be a day trip, but when fluid was discovered around his lungs, he was hospitalized again for about a week. Apparently, his lungs had been traumatized from all of the biopsies 2 weeks prior. They inserted a drain in the side of his chest called a Pigtail, which was one of the most painful things he had to endure. The pigtail was hooked up to a suction machine that would suck the fluid out of his pleural cavity. I slept in the hospital room on a chair beside his bed and I would watch the machine fill with an incredible amount of fluid. He would say, “Mom, can we get them to turn that off for a while? It really hurts.” He was obviously in a lot of pain. This went on for a few days. By this point Levi had also suffered 5 pulmonary embolisms and an infarct (a small area of dead tissue in the lung resulting from loss of blood supply). His blood had thickened from the cancer causing the blood clots. It just seemed to be one thing after the other.
During that initial meeting with the oncologist, he explained the protocol and the plan for Levi’s treatment so we would know what to expect. He was hopeful that the chemo would shrink the 5” tumor that was in Levi’s abdomen and that there would be no need for additional surgery. But Levi’s tumor was the mixed cell type, so there was a chance that the chemo wouldn’t take care of it. And it didn’t. Basically, some of the cells inside the tumor were not cancerous and some were. The chemo was effective in killing the cancerous cells, but the other cells continued to grow and were rather aggressive. Levi was initially scheduled for 12 rounds of chemo, but by round 9, it was determined that chemo would be paused and the tumor would be resected immediately. It was simply growing too quickly and had reached a diameter of 8”! They were afraid that if it got any larger, it would be extremely difficult to remove and it was simply too risky to wait until the end of the 12th round. They were afraid that his organs would start to shut down because they were so squashed. I was so relieved the tumor was finally going to be taken out. Ever since the tumor had been discovered in March, I just wanted it out of his body!
Throughout all of this, Levi was finishing up his schoolwork from spring semester and studying for his final exams. He scheduled his finals around his chemo and surgeries so he would be in the right frame of mind to take them. He took his Organic Chemistry 2 final right before this big surgery to remove the tumor and he did amazingly well! The professor couldn’t believe it. He said, “Levi, you are one bada$# kid!” Remarking that some of the students who came to class everyday didn’t do as well as Levi had. He was so relieved and I was glad that this hurdle was out of the way.
On June 30th, 2 surgeons performed the 5-hour surgery. They told us up front that there was a 10% chance that Levi would lose the kidney that was right next to the tumor, depending on how involved it had become. He did lose that kidney as well as a rib that had to be removed in order to gain access to the tumor. They also removed many lymph nodes. All of Levi’s organs had been displaced to one side because the tumor was taking up so much space. The surgeon said that he basically had to remove all of Levi’s organs, and then place them back into the abdominal cavity in proper order. Can you imagine? It was the longest 5 hours of my life. Levi had an incision that spanned diagonally from his belly button to the side of his chest. 35 staples in all.
Over the 5-month course of Levi’s 12 rounds of chemotherapy, he was hospitalized 5 or 6 different times for severe nausea. He was completely unable to eat or drink (or keep meds down) and needed to be on an IV so he wouldn’t dehydrate. He would have one week on, and one week off of chemo. Each time, taking him 3-4 days to recover. Every cycle was so difficult for him and unbearable for me to watch.
Just as the year was coming to a close and we thought we were in the clear, Levi felt some discomfort in his groin area. We took him for a scan and then came home to wait for the results. I was so distraught I had to leave the house. All I could think about was the oncologist telling us about follow-up treatment if the cancer had returned. He said the drugs were very strong and used the word “horrific.” I couldn’t even wrap my brain around that. What he had been through was horrific enough. I didn’t think he could survive round 2. I was literally on my knees sobbing. The scan indeed revealed 2 more small tumors, which were immediately removed. The subsequent pathology confirmed that there was no evidence of cancerous cells and the oncologist determined that no follow-up chemo would be necessary. I swear Levi and I held our breath for 2 days waiting for that call. I was cooking dinner when the doctor called me to give us the news. I closed my eyes and held the phone to my ear. I started crying when he said the words. Levi was sitting at the island in the kitchen and I turned to tell him. He closed his eyes, put his head in his hands and took the biggest, deepest, cleansing breath and said, “Ah! Thank God I don’t have to do chemo again!”
I am happy to report that Levi is graduating with his class in May 2017. Despite his illness, he never missed a beat. He kept studying, writing papers, and taking tests, all through his many surgeries, numerous hospitalizations, and chemotherapy. I distinctly remember him taking his books to chemo, puking his guts out and picking them right back up again. Who does that? What he endured and overcame was enormous. At 19 years of age, he looked death in the face. But he never quit, and pushed through with a determination and grace I’ve never before witnessed. Throughout, his quiet display of confidence in his ultimate healing was truly inspiring. Daily, we pray for his continued healing. This August, he will be 3 years out from his last day of chemo.
When Levi was very young, I placed this framed quote on the wall above his bed-
Yes, we got a new family doctor.
Yes, Levi can still have children.
No, none of the doctors ever apologized for missing the cancer. His own family doctor never personally followed up to see how he was doing. It’s so sad to me that the most basic of human courtesies and caring have been exchanged for a greater concern with self. With some doctors ultimately deciding to tiptoe around- sidestepping- because they are afraid of an overly litigious society. What have we become? I just wanted an apology.