Alice – Rare Cancer: a Journey
How do I describe my journey through cancer, a rare cancer at that?
April 6, 2007: It wasn’t quite a normal day. Surgery isn’t normal. My gynecologist decided that a hysterectomy was appropriate to determine the cause of abnormal bleeding and a fibroid that on MRI didn’t look like the others. We knew that in my early 50s, I was done having kids. Cancer markers for ovarian and uterine cancer were normal, so we expected this to be a “routine” hysterectomy. He even agreed to do it under spinal anesthesia, as I was terrified of general anesthesia. I was very calm going into surgery, expecting nothing more than a sore belly when I came out.
I don’t remember much about the surgery – something mentioned about my appendix, but the sedation, while allowing me to talk with the doctor throughout, eradicated most memories of the event. I felt fine in the recovery room, and was chatting nonchalantly with the nurses, though was surprised that my husband wasn’t allowed in to see me there, as I’d been told he would be. My world had changed, but I didn’t yet know it.
When I finally got to my room, my husband and my doctor came in together. Dr. C told me that he’d found cancer, that my ovary had been encompassed by a massive tumor that had originated in my appendix. I started screaming, crying, anything to get me to awaken from this nightmare. They quickly moved me to a private room. My husband later told me that Dr. C was distraught and shaking when he came out of the OR to talk to him. I also learned from Dr. C’s staff that his wife reported that he went home and cried. He couldn’t believe what he had found, and he believed my prognosis to be poor. My hysterectomy was expanded to be a TAH-BSO with appendectomy under the guidance of a GI surgical oncologist that my gyn called in.
Diagnosis: “mucinous adenocarcinoma of the appendix with metastases to the ovary and omentum, and extensive peritoneal seeding.”
Shock. Disbelief. Someone wake me up. Where is my world? What is my world? What is reality? This can’t be happening. I’m too young. I’m going to die. What do I do? Where do I go? I’m going to die and everyone will see that my house is a mess! And on and on. Life in the Twilight Zone. Days were bad, but nights were worse. As soon as the lights went off, my head would start spinning.
Consults – I needed to travel to experts for consults. My local oncologist, at a major medical center, had no references for this rare cancer.
After meeting with 3 different experts with 3 different approaches, I chose the one whose approach made the most sense to me based on the specifics of my tumor type. Dr. P recommended laparoscopic surgery to ensure all cancer had been removed, and placement of a belly port for a series of subsequent intra-peritoneal (IP) chemo treatments with FUDR. If he found more cancer, I would require full open surgery, a laparatomy. This might be followed with possibly systemic chemo. I had time, and didn’t need to race into anything. Best case, I’d be in the hospital 4 days; worst case (if I needed the laparatomy) I should be out in 10 days.
Surgery was scheduled four months after my initial surgery. In the meantime, I bought myself a new kayak, and spent as much time on the water as possible.
During surgery, Dr. P carefully examined every organ in my peritoneal cavity for any cancer, all signs of which were removed. He opened me wide (no more laparascopy), resected my colon in several places, removed my omentum, and placed a belly port. 48 hours after the massive surgery, my first cycle of IP chemo was started.
However, major complications ensued and my expected 10-day hospitalization was almost tripled to 29 days. My gut wouldn’t resume functioning (ileus) for 3 weeks. I developed a major incisional infection and pneumonia. NG-tubes and other catheters and PICC lines, in, out, in again. More tests. Start eating. Then nothing by mouth for several weeks. Would the problems never cease? Would I ever go home? Would I ever feel alive again? Would life be worth living again?
At long last, I did go home, weaker and sicker than I could have ever imagined. I was finally scheduled for my second of a planned 8 cycles of IP chemo several weeks after my hospital discharge. At my first post-hospital round, more complications, in that I was experiencing pain that greatly exceeded anything the nurses had seen before. We learned that I had to have the chemo with a narcotic meds drip started in order to tolerate something that shouldn’t have made me feel more than bloated. Narcotics were continued 5 days post-treatment. Debilitating pain in a woman who gave birth to several children with no pain medication whatsoever. IP chemo consisted of 3 days of infusions: 2 liters of FUDR over 2 hours on day one, one liter each over an hour on days two and three. Then roll from side to side for an additional hour each day to disperse the chemo. All four liters were left in to resorb on their own. Repeat in two weeks. Still, after 5 of the 8 planned cycles, the doctors decided that the risk of damage, as indicated by my ever-increasing pain, exceeded the benefit, and IP was discontinued.
My belly port was removed without a hitch (yay!); chest port was placed, and more rare complications from the port kept in the hospital overnight to get it replaced the next day, resulting in much more pain from that procedure than the norm (and a much bigger scar).
During systemic chemo [Folfox], I encountered even more problems. My side effects were the rarest; ones that they don’t bother telling you about because most medical centers have never seen them. In addition, for my first round of chemo, a nursing error resulted in me getting a massive overdose of chemo, based on someone who weighed more than half again as much as I.
Subsequently, I had 7 of a planned 12 rounds of systemic chemo. The side effects were too severe for me in this as well. Since all of my drs agreed that the systemic chemo was of questionable value in my specific case, but was their “best guess scenario”, I decided that the known complications were not worth the unknown possible benefits.
By the time I stopped chemo, I could barely walk. My hands and feet were bleeding and in pain. I had developed an anal fissure from the chemo that I was told would not heal until I stopped chemo (o, the pain!) I had major neuropathies. I felt lousy and miserable.
Getting through chemo was incredibly difficult. But I did it. I’m told by others, by doctors, that I handled it unusually well. Somehow, we manage to draw on strengths we may not know that we have. I certainly didn't know I had this in me. I learned a lot about myself during this experience, and the self-understanding continues.
Fast-forward to today, almost 5 years since stopping treatment, 6 years since diagnosis: I bicycle, kayak, curl (on ice.) I travel, work, play. I do what I can to show other cancer patients that there is “the other side” and that after all of the suffering from treatment, you can resume life. I’m living a “normal life”. My daughter graduated college. My son was married. I’ve competed in curling competitions around the country, snorkeled with octopus in the Caribbean, studied French in France. Life goes on, and I’m in the thick of it. I’m planning to be here for a long time.
I still have some neuropathy issues. My feet hurt a bit, and my fingers tingle. I am hyper-sensitive to sound. I’ve gained a lot of weight with the changes to my metabolism and digestive tract. I have regular scans and blood tests. Because of the rarity of my cancer and its tendency to come back after 10 or 15 years, I will never be declared cured. I had additional major surgery in 2010 to repair an incisional hernia, resulting in 6 more (uneventful) days in the hospital. But overall, I’m doing very well. I’m living a normal life.
Cancer will always be part of my life. However, it is no longer omnipresent; a constant shadow of the sword of Damocles. It’s something in the background that I hope will remain in the background until such time as we need to address it again. And I’m sure I will be facing active cancer again. But right now, I have too much life to live to spend it worried about the future.
Yes, there is life after cancer. And yes, we do survive.