Ovarian Cancer Part 1

Last summer, I had a hysterectomy. This was performed due to an excessively large fibroid that had taken over my uterus and was wreaking havoc on my body. (Actually 8 fibroids, we discovered, after the surgery.) I never had any intentions of having children and my awe with the natural monthly occurrences of the female body had run its course. I was tired of it all and elected to have my reproductive equipment removed.

As with any surgery, there were many things to consider. Since it is not desirable to open one up any more than necessary, I was asked to make decisions about what else, if anything, I wanted removed. The ovaries were the main issue. I asked my doctor for guidance and she told me she always erred on the side of caution when it came to ovaries. This meant, if at all possible, keep them. I told her I would do some research and get back to her. I thoroughly investigated this situation and decided that it would be in my best interest to keep them as there were greater than normal health risks associated with being forced into menopause by surgical means. There were some conditions in which I approved her removing the ovaries: if they appeared to be diseased or not functioning. I figured in either event, I would end up back in the operating room having them removed at a later time so why not save us both some time and energy.

I had been having pain in my lower right side for several years and felt confident that my right ovary was somehow involved. (I kept telling my doctors that but since I didn't have a medical degree and they did - I guess my thoughts were unworthy to them.) In my mind, I did not expect that the right one was going to be able to be salvaged. My left one, based on physical exams and sonograms, appeared to be fine so I had high hopes of keeping that one.

The day for surgery finally came and the culprits of my pain were finally removed. It was a long, laborious surgery but successful. I was sporting about a 1 foot incision from the nether regions all the way up to my belly button ~ vertical not horizontal due to the size of the fibroids and uterus. (While fibroids are rarely cancerous, the goal was to remove everything in one piece so as not to dislodge any potentially cancerous cells into the open wound.) As with any incision like this, the best strategy for patient relief is drugs and lots of them. They kept me pretty shot up with morphine which allowed me to do all the things they needed me to do before I could be released from the hospital.

I think it was day 3 before I even thought to ask anyone what they removed from my body during the surgery. I was immediately disappointed when I learned that not one but both ovaries had to be removed. I asked my doctor why. She explained that she found cysts on both ovaries and had this gut instinct to take them. And in the same breath, she informed me that while she did not have any written reports yet, the pathologist at the hospital had some concerns about the cysts. He had forwarded them on to another pathologist for a second opinion. Then she asked me if I wanted to go home. Hum - lots of morphine floating around my head, a visitor that day who stayed far too long, I was missing both ovaries and was now in surgical menopause at 36, something was funny with the cysts on my ovaries, and now a car ride home? It was all a little too much for me. I said sure and hoped things would get better.

I was a bit queasy on the car ride home, but was happy to be there when I got there. My family had choreographed my arrival with the walking of my dog (aka my baby girl with fur) so that I would have a couple minutes to get in the house and get settled with a barrier of pillows before she came back in. (Our love for each other is immense and we do not like spending time apart. Three days was a LONG time.) I settled into the couch, piled pillow upon pillow on my abdominal area and sides, and was ready for her love. My dad brought her back in and when I called her name, she ran like a bat out of hell towards me. My mom gave her instructions on what she could and could not do. She seemed to be taking notes although I never saw her whip out a piece of paper. She didn't care what the restrictions were as long as we could be together again and I felt much the same way.

Four days later, it was time for my first follow up doctor's appointment. My mom and I piled into the car and set out on our journey anxious to find out what the second pathologist had discovered. When I got there, my doctor informed me that I had a serious infection and either needed to start taking these potent pills for $10 a pop for 10 days or go back into the hospital for IV therapy. I decided to try the expensive pills - I wanted to be at home ~ I wanted to be with my baby girl. Then I inquired about my ovaries. She flipped through my file and said that not only did both pathologists find the ovarian cysts suspicious (which is fairly uncommon), but now they found tumors in both ovaries and the tumors appeared suspicious too. At this point, she informed me that my ovaries had been sent to New York for further testing. Hum - not sure what to think so I didn't.

I was exhausted from the trip and still higher than a kite on pain medicine. I am sure my mother and I discussed this new information on the way home but nothing is sticking in my head now. All I knew was that there was something suspicious about my ovaries and until I knew something definitive, I wasn't coming unglued. We stopped to put in my super potent antibiotic prescription and I was pleased that my insurance picked up a portion of the bill as this medicine is not generally covered under insurance. (Seems like they would cover it as it would be a lot cheaper than paying for me to go back in the hospital but that is for them to figure out - not me.) Went home, made all the obligatory phone calls informing everyone that I now had suspicious ovarian tumors too but did not know anything more.

Week 2 - next follow up appointment. My doctor was pleased with the progress my wound was making and felt that the medicine was licking the infection. She applauded my mom for being an excellent wound attender as she was having to wash it 2 times a day with hydrogen peroxide. Sounds easy but the wound was not pretty, there were retention sutures which were trying to grow into my skin that she had to pull away and wash, and my mother never wanted to be a nurse. God Bless Her! Then I asked about my ovaries. She flipped though my chart again, said my ovaries had stumped the pathologist in New York and they were now on their way to Milan, Italy - headquarters for Ovarian Cancer Research. I almost jumped off the exam table when she informed me that my ovaries were going to Milan before I was! I looked over at my mom and saw her laugh at what I had just said/done but also saw painful tears streaming down her face.

We got in the car and I wished I was able to drive as I thought I was in better condition than my mother at that moment. Before the appointment, my mom and I had discussed possibly stopping at this cute, little shop on the way home if I felt up to it. As we approached the shop, I asked mom if she still wanted to go. She gulped loudly and said, "no," she really just wanted to go home. Then the tears started again and her voice started cracking. She pulled it back together so that she could get us home safely but her emotions let loose when we pulled into the driveway. I called my sister and father and I broke for the first time letting them know things were not looking so good. They both wanted to talk with mom but mom was out of commission and did not want to talk with anyone. They understood and asked if they should come up to my house. Mom said no - she wanted to be alone and I really couldn't have cared one way or the other. I was still operating under the "I'll come unglued when I know something for sure."

This next week, we spent many hours discussing the state of my ovaries and whether all these pathologist thought I did or did not have cancer. What was it that was stumping them? Why did my ovaries have to go all the way to Milan, Italy? At some point, my mother decided that the doctor all suspected I did not have ovarian cancer but they wanted to make sure they weren't missing anything. I, on the other hand, did not think things were looking so good.

Week 3 - Mom needed an answer now and we planned to get one from my doctor during this follow up meeting. At the very least, she wanted to know which way everyone was swaying. Did they think I had cancer but were just making sure before issuing a final ruling, or did they think I didn't but wanted to make sure they had looked at everything before telling me I was OK? We went in for my appointment and the doctor was very pleased with the healing. The wound was looking good - finally. Now for the big question. Did I or did I not have cancer? My doctor flipped through my file, found the final report from Milan, Italy and confirmed that YES I did have ovarian cancer. I immediately looked at my mother and ask her if she heard that - I did have cancer. I wanted to make sure we were both on the same page when we left that day. She shook her head yes. Then I asked my doctor where she was going on vacation. I don't know - the news just didn't phase me. My doctor explained that she wanted to see me again at week 4 and if the wound continued to do as it had been doing, she would release me at that time to Moffitt Cancer Center. She said that ovarian cancer was a very tricky disease and she wanted the experts working on this situation. I agreed. So that was the plan.

Mom cried all the way home this time. I called my sister and father and told them the news. A friend of mine who had been regularly in contact with me called to find out what the doctor said, and when I told her, she got very quiet. Knowing that she had a vast amount of medical knowledge due to her own reproductive issues, I took her silence seriously. "It's not good, is it?" I asked. "No," she said, "this is not good."

Still having 2 more weeks before I could resume any type of normal activity, I hopped on the computer and started researching madly. I wanted to know as much about this disease as possible. I quickly learned that it was VERY deadly primarily because by the time it is found, it had already spread. I thought about the pain I had been having for the last 4 years and realized this was probably describing my situation.

I had never feared death. I had strong beliefs in a Higher Power and believed that when my physical body gave way, my spirit would live on. I had no children or husband to leave behind and knew that someone would take and love my "baby girl with fur" for the rest of her life. My finances were in order, I had made amends with all I had wronged, and I realized I could die immediately in peace. It was a nice place to be considering what I was facing.

Week 4 - Went to see my doctor "hopefully" for the last time before being referred to Moffitt. She said everything looked good and was releasing me to Moffitt's care. She told me how the referral process worked and when I could expect to be hearing from them. She hugged me, wished me the best, and said good bye. And away I went.

Moffitt called 2 days later and set up my initial appointment for the following week. I called the masses and put them on notice so that we could all make the journey together. I was not in this battle alone; I had my family by my side! Mom and I had to collect all of my medical records as well as slides of my ovaries and other organs/tissues collected from the surgery. This took a couple days and gave us something else to focus on.

When we went to pick up the slides at the hospital, the girl made some comment about just preparing them that morning. I asked about the process and she explained it to me. She told me that my ovaries had been preserved in cubes of paraffin wax and each time slides were needed, she simply sliced a thin layer off of the paraffin wax block. I was amazed and she asked if I'd like to see them. Of course I did! They looked like two big dice. The colors were not so pretty - browns and blacks. Not nearly as pretty as the colors on the slides - pinks and purples - because they put a dye on the slides to make the cell easier to see.

As luck would have it, I won a computer microscope a couple years ago by completing a survey. So as soon as I got home, I broke out the microscope and started checking out my tissue slides. The ovary slides were amazing. I could see with my own two eyes where the cysts and tumors were. It was no longer taking someone else's words for it. I saved several images on my computer which I plan to use one day to make a fabulous wall hanging. I doubt anyone will even know what it is - unless of course they read this entry.

Mom and I packed up on Sunday and head to her house in preparation for my appointment at Moffitt on Monday.