My Cancer Journey to Date

On May 5, 2002, my 56-year-old sister learned that she had ovarian cancer. It was stage 3C. I spent that summer with her in Pensacola while she went through the initial rounds of chemotherapy. I returned to Memphis in the fall to begin a new semester of teaching at the law school. I also made an appointment with my dermatologist because of a rash that developed in my navel where I had been using Neosporin to treat what I thought was some type of cyst or abscess. The dermatologist told me that I should have the “cyst or abscess” removed by surgeon and biopsied, but I was told not to worry, that it was not a “Sister Mary Joseph's nodule,” which is evidence of stage 4 ovarian cancer. She even showed me a picture of a Sister Mary Joseph's nodule, and it looked much worse than the small abscess on my navel. My next appointment was a consult with a gastroenterologist who had done my baseline colonoscopy several years earlier. I was concerned that my stools had taken on a funny shape. Rather than being cylindrical, it appeared as though to thinkers have pressed down on one side of the cylinder. I was concerned that this might be a sign of colon cancer, which he assured me it was not. Instead, it was ovarian cancer pressing in on my colon wall, but he did not mention that as a possibility to me, and, consequently, I never mentioned the bowel symptom to my OB/GYN. My next appointment was with my internist’s nurse practitioner, who scheduled me for a CA 125 and referred me to a general surgeon about the navel issue. My CA 125 was only slightly elevated at 78, but my OB/GYN worked me in immediately for a vaginal ultrasound which revealed a large cyst on my right ovary. She ordered a CAT scan and had evaluated by her partner as well. She recommended a prophylactic hysterectomy but assured me that it did not appear to be cancer. She and her partner both squeezed on the naval abscess and wondered aloud what it might be, stating that the general surgeon could be present at the time of the hysterectomy and could take care of the naval. My next visit was to the general surgeon, who had performed a laparoscopic gallbladder removal on me several years earlier. He assured me that the navel issue had nothing to do with the earlier surgery which involved going in through the navel. He mentioned several things that the navel abscess could be, none of which were cancer. He indicated it would be very minor surgery and that he would perform it at the time of the prophylactic hysterectomy. These were all good doctors. I think it just illustrates what we all know – that ovarian cancer is hard to diagnose and that it is the last thing doctors think about.

I went in for my prophylactic hysterectomy on October 2, 2002 and woke up the next day to learn that I had stage 4 ovarian cancer. The abscess in my navel was a Sister Mary Joseph's nodule. The changes in the shape of my stools were due to the cancer pressing in on the walls of my colon. Because cancer was not suspected, I was not told to prep my bowels before the surgery. Consequently, the bowel could not be reconnected after the cancerous portions were removed, and I was given an ostomy. I was in surgery over 12 hours and received 8 bags of blood, due in part to the fact that I take coumadin for a blood clotting disorder. On the upside, when my OB/GYN discovered that the tumor was malignant, she called for a gynecological oncologist and one happened to be available to complete the debulking procedure, which turned out to be optimal. The gynecological oncologist told me that the fact that I had the ostomy was good news because it would allow me to have second-look surgery to reconnect my bowel after completing the chemo. The doctor could check the time for microscopic presence of cancer and could also insert an intraperitoneal port for high-dose chemotherapy as consolidation therapy, which would give me the greatest chance for long-term survival.

My third sister, who is 10 years younger than me, had a prophylactic hysterectomy shortly thereafter, performed by a gynecological oncologist in Chattanooga. No sign of cancer, thank goodness.

I went through eight rounds of Carbo Taxol, switching somewhere along the way from Taxol to Taxotere because of neuropathy. Had lots of nausea, had one bowel blockage, and developed a large hernia under my ostomy, but otherwise tolerated the treatment pretty well. I couldn’t take coumadin during chemo, so I had to give myself Lovenox shots in the stomach twice daily. I really hated that but there was no alternative. When I went in for my second look surgery on April 15, 2003, the doctors were not able to remove the ostomy or insert the abdominal port because of excess scar tissue. They tried to repair the hernia, but it didn't hold. They were not able to use mesh because of the cancer. And, finally, the cancer was still microscopically present, despite my having clear CAT scans and CA 125’s of 11 and below, following my first round of chemo. My response was, “Okay, so what is plan B?” The doctor told me about a high dose chemo, supported by stem cell transplant protocol that was being tested at MD Anderson in Houston. The way it was explained to me, most any cancer can be killed if you get the chemo dose high enough, but you also kill off healthy cells at the same time, including blood cells. The good thing about putting the high dose chemo in the abdomen is that it avoided having to put it in the blood system. Since I was not eligible for the abdominal route, my only option was the systemic high dose chemo, which required the stem cell transplant, but the doctor warned me that some insurance policies would not pay for the procedure.

I called my carrier and they told me it would be covered. I made my appointment to be screened at MD Anderson for the clinical trial. Shortly after returning from MD Anderson, I received a call from my insurance company telling me that the treatment was not covered because it was considered experimental. I immediately went into “lawyer mode,” found my policy and began to learn about the appeals process. I knew that time was of the essence because I had to be in clinical remission in order to qualify for the clinical trial. I knew I still had the cancer and that it was growing. It was just a matter of time until I would no longer be in clinical remission. I outlined all of this for the insurance company, putting them on notice of the need for an expedited appeal. I worked on the appeal, nonstop, for the next 12 days, researching the law, the cases, the medical literature, etc. until time to argue my appeal in person in Nashville (typically, appeals take months to process). I won the appeal, was granted a waiver, and was on my way to MD Anderson a week later.

My daughter and I spent the summer there (you have to have someone with you at all times, except when you are in the hospital. They have to learn to flush the central line, clean and change the dressing, administer antibiotics and fluids by IV fanny packs, etc. It is not for the faint of heart, but they have classes for patients and family members and everyone manages to learn what to do, it seems). After a huge battery of tests, including a bone marrow sample, they removed my port and inserted a central line. Then I was hospitalized for 5 days for a cocktail of medium-high dose chemo. I also had to get off the coumadin again and back on the Lovenox shots. Next, I began giving myself daily shots to build up my stem cells. After a few weeks of that, they harvested the stem cells by removing the blood, running it through a machine and then putting it back in. All of this was done through the central line, but I had to remain lying in the bed for 7 hours at a time while it was done. The blood is very cold when it is replaced so you feel like you’re freezing from the inside out, but they give you lots of heated blankets. Fortunately, I made enough cells that they got all they needed the first day (it is more usual to take 2-3 days). Then I got a couple of “free” days before going back in the hospital for the high dose cocktail. I had a lot of nausea, so I was on a drip and nothing by mouth for a couple of weeks, but the lady who finished the day I arrived never missed a meal. We all react differently. After the high dose chemo runs its course, they give you back your stem cells that have been frozen in the interim. They harvest enough so that if the first batch doesn’t take, you have a backup batch. My first batch took and I started to regain my strength and return to normal. I now had a brand new immune system, like a new born. I even had to get all my baby shots again. The folks at MD Anderson were caring, wonderful, and professional.

My red and white cells continue be a little low, but otherwise I am back to normal. My cat scans have continued to show no evidence of disease and my CA125’s continue to be normal. I was told that because my cancer is a lower grade cancer it is more resistant to chemo, so even the high dose chemo may not have knocked it out completely. On the plus side, it is also slower growing. So far, so good. My philosophy is that I am well until someone tells me otherwise.

My cancer is estrogen positive, so I also take Femera to prevent my body from producing estrogen. At first I had a lot of joint pain, stiffness and hot flashes, but they are pretty much gone now. Other side effects include weight gain and high cholesterol, but I am working on both of those with diet and exercise and am making steady progress.

My sister, unfortunately, was not so lucky. She succumbed to the cancer on December 16, 2004, a little over 2 ½ years after her diagnosis. She had a much more aggressive, fast growing cancer and a less optimal debulking. She was also platinum resistant. Her initial CA 125 was almost 1000 and it never fell into the normal range. She tried all the salvage drugs. Each worked for awhile and then the cancer would become resistant and take off again, sending the CA 125 ever higher. She stayed in Pensacola until Katrina hit, damaging her house and the hospital where she received treatment. She moved in with me and continued her treatment with my doctor at the West Clinic until she went on hospice care on November 1, 2004.

Our family has undergone genetic testing and, so far, all the results are negative. A lab has stored our blood, however, in the event that new tests are developed.