My Story | Michele T., Pennsylvania, USA
I'm only 43 years old, but during the last few years of my life, I've managed to overcome both infertility and widely metastatic vulvar cancer. It's so hard to separate all that's happened to me, that I hardly know where to start my story, but I guess it began with an abnormal PAP I had during my infertility days.
I spent over two years trying to get pregnant with my first (and only) child, and, after one miscarriage, finally succeeded using fertility drugs. In between the miscarriage and the pregnancy, I had an abnormal pap. My reproductive endocrinologist was very cautious, and although the PAP was only slightly abnormal, she insisted I have a colposcopy. So when I was five weeks pregnant with my daughter, Zoe, she referred me to a gynecological oncologist (GYN-ONC) for the test. He said everything looked fine, and that my abnormal PAP was likely caused by irritation from the D&E (dilation and evacuation) following the miscarriage. Ironically, this doctor would later treat me for Stage 4b vulvar cancer.
The pregnancy was not easy, and after many difficulties, I ended up in the emergency room in danger of miscarrying again at 22 weeks. Luckily, I managed to stay pregnant for almost seven more weeks by lying flat on my back in the hospital. My daughter, Zoe, was born 11 weeks early on June 17, 1997.
Zoe did well for an early preemie, and came home from the hospital after eight weeks. Her first year was very difficult, full of worry and isolation, because we wanted to prevent her from getting sick. But by the end of April, 1998, her pediatrician gave us the go-ahead to start living a normal life. At last we were able to be around other kids and go on vacation! I was 40 years old at this point.
We had a big one-year celebration for Zoe, part birthday party, part introduction-to-the-world party, as there were many people who had not even met her yet. I was really stressed then, the memories of the hospital stay and premature birth remained very strong in my mind. A couple of days after the party, I came down with a cold and also got my period. I started to feel a pain in my vulvar area, but I was so sick, so tired, so out of it, that I didn't even check it for a week.
Then we went to visit my family for the weekend, and in the middle of dinner one night, I was in so much pain I got up, went to the bathroom, and felt around to see what hurt. It was a very small lump inside of my clitoris. I was absolutely terrified! I told my mom and she looked really scared and said I had better get it checked right away. I saw my OB/GYN the next day. She said that it looked like a cyst, and because of its location, she couldn't pop it, or even biopsy it. She thought it would go away, but told me that it might get larger before it popped. She gave me some Lidocaine for pain (which was useless).
At this point, our lives were about to get extremely busy. My husband won a week's vacation in Hawaii, and, on very short notice, we planned to leave with our one-year-old daughter. On top of this, the day we returned from Hawaii, we were to leave again for a week at a rented beach house in New Jersey. And then, after a week home, we were off again for a week in the Poconos for my family's annual vacation. While in Hawaii, I was still in pain, had bad diarrhea and hemorrhoids, some back pain, and generally felt crummy. The 12-hour flights to Hawaii were horrendously uncomfortable, and the trip to the shore was miserable. I spent most of it crying that I wanted to go home.
We got home from the shore and I spent the next week on the couch (thankfully Zoe entertained herself quite well in those days). Then we were off to the Poconos for my family's vacation. In the midst of that, I got another "period" and started bleeding nonstop. The lump got bigger, the pain in my hips and back kept me from sleeping, and the pain in my clitoris was terrible. The minute we got back, I walked into the house, deposited Zoe in the living room, and called my doctor. She saw me within two hours.
She took one look at me and said, "Oh, my God!" She said she didn't know what it was, and that while she wasn't saying that it was cancer, I needed to see a GYN-ONC. She referred me to the same doctor who had done my colposcopy. Since she wasn't able to get me in the following Monday,(it was late Friday afternoon), she got me an appointment with his partner on Wednesday, and told me to call on Monday to see if someone could fit me in. Needless to say, I was scared to death, but I still never looked at myself in a mirror. I think I was too scared of what I might see. I was in such a daze that whole month.
Luckily, my doctor was able to squeeze me in the following Monday. During the examination, I will never forget the nurse's face when she saw my vulva. When she winced, my heart sank. At first, my GYN-ONC thought he would perform the biopsy in the office, but then he said it would bleed too much. He told me that if I were his wife, he would want the procedure done in an operating room with all the facilities of the hospital at hand. He told me that it did not look good, and that it was likely cancer. Apparently, the growth had taken over my clitoris which was indistinguishable from the tumor. A ring of tumors made the opening to my vagina so small the doctor could barely insert a pinkie , and my cervix looked bad, too. He told me that the treatment for this type of cancer was usually quite radical, a surgical procedure that removed most of the vulva (vulvectomy).
My doctor was really very compassionate in giving me this news, but he also looked extremely concerned. I began to cry. I told him I couldn't die because I had a one-year-old daughter who needed me. He said he understood and patted my hand. That night I went home and looked at myself in the mirror. I was horrified to see the most horrible, mangled, lumpy, twisted tumor where my clitoris was supposed to be. I never let my husband look at it.
The next day I went into surgery and he did biopsies all over the place. Although originally I had been told I would go home that day, when I woke up from the anesthesia, they told me that I needed to spend the night . Apparently the bleeding was bad, and they wanted to make sure it didn't get worse. My husband was told that there was cancer in the vulva, vagina, and cervix, but that the bladder, rectum, and lymph nodes looked clean. I was happy to stay in the hospital that night dosed with morphine. What a great drug! I could have cared less about anything that night! But the next day was a different story. I went home on Percoset, had a reaction to it, and started Darvoset. They had also given me another drug called Tordal, and I had an allergic reaction to that too. I was in terrible pain, constantly bleeding, having allergic reactions to drugs, and sure I was going to die. It was horrible.
It took them a while to get the pathology report because they needed to do additional tests on the samples. Finally, they determined it was squamous cell carcinoma, and decided it was vulvar cancer based on its location, although my doctor told me that, honestly, they didn't know for absolute sure where it started. I had a CT (computed tomography) scan, and more bad news. There were over 200 nodules on my lungs, but strangely, there was no evidence of cancer anywhere else. I was told this was highly unusual, because this kind of cancer usually did not jump across the body in this way.
My doctor said that I was not a candidate for surgery because my cancer was too far along and he wanted me to start chemotherapy immediately to prevent the cancer from spreading. I never got a second opinion, as there was really no time. I had a tumor that was growing and spreading so incredibly fast that I was going to be dead very soon if we didn't get treatment started. Needless to say, this was a horrible, horrible time. I have encountered tragedy and adversity in my life, but nothing can shake you up like staring death in the face when you have a one-year-old child. I just knew that I could not die. Zoe needed me too much, and if I died, she would never even remember me. I couldn't bear that thought.
There were things that I didn't want to know. I didn't want my doctor to tell me what my chances of survival were. I did ask him once, when he told me about the lung nodules, if I was going to survive this. He said that he really wished he could tell me I would survive, but that he honestly didn't know. He was always honest with me, but he also seemed to know what I could handle hearing at any given point. I only asked once what stage I was in and he said "later stages". I knew I was Stage 4, but I never pushed him to tell me. I decided that I didn't want to be limited by statistical expectations. But by then I had done some research on the web and I knew the survival rate for Stage 4 vulvar cancer was only 5%!
My brother and my college roommate both told me to start drinking Essiac tea. My brother sent me some of the dried herbs, and my husband began the long and stinky two-day process of brewing the tea for me. I began drinking it after I had my first chemo. We both figured, what the heck, I didn't have anything to lose. I did make sure to ask my oncologist about it, though. He said that while there was no scientific proof that it worked, it wouldn't hurt me, and he told me to go for it. He said his only experience with it was a patient of his who had cervical cancer. When she had a recurrence, she refused medical treatment and drank Essiac tea. While she did die eventually, she lived a lot longer and a lot better than what would have been expected for her advanced stage. I found that within a week or two of using the tea, I could stop taking the narcotic for pain and could manage with a couple Anaprox a day. I also drank a nutritional whey supplement called Optimune every day. It was supposed to help keep your blood counts up, and in my case, it worked. I never had to put off a treatment due to low counts, and I did not get a cold the entire time I was getting chemo, even though it was cold and flu season.
My chemotherapy regime consisted of a total of six rounds, one every three weeks of a taxol/cisplatin combination, considered to be the big guns in the chemo world. Because of their toxicity and side effects, my doctor's practice liked to give the taxol/cisplatin over a 24-hour period which meant I had to get my chemo as an inpatient. The combination of drugs took around 36 hours to administer. I would go into the hospital sometime in the late morning one day and leave around midnight the next day.
Chemotherapy was very rough for me. I tried every anti-nausea drug there was and nothing helped. I threw up constantly for a few days after each treatment. I had severe heartburn that was worse during the first week after treatments, but continued all month despite medication. I lost my hair, which although it was no fun, was really the least bothersome of the side effects to me. I got neuropathy, pain and numbness in the hands and feet. I was very spacey and had a very hard time concentrating on anything. I spent a lot of time doing really easy crossword puzzles because I couldn't focus on reading, or anything too challenging.
Each treatment got progressively harder, and by the fifth or sixth, I was crying the night before I had to go into the hospital. And the hospital stays themselves were not easy. I never got any sleep, had a lot of difficult roommates (and a few really nice ones, too), and just hated everything about it. I had lived in that same hospital for seven weeks while pregnant, my daughter lived in the NICU (Neonatal Intensive Care Unit) for eight weeks, and I was okay, but one night of chemo in that place made me nutty! And then there was the fatigue. That was the hardest. Thankfully my mother-in-law stayed with us for the first week after each treatment to help take care of my daughter. I could barely get off the couch on some days, or get out of the bathroom. Weirdly enough, even with all that sickness, I actually gained weight during chemo. I was not thrilled with this since I was pretty overweight to begin with, but all the medical people were happy I was gaining.
The plan was to do two rounds of chemo and then have a CT scan to see how it was working. Then I was supposed to take a break and do radiation, then finish up the chemo. But after two rounds of chemo there began to be amazing changes. My CT scan showed a remarkable reduction in the amount of lung nodules. Where there once had been hundreds, there were now only a few. The tumors on my genitals were "melting away", as my now ecstatic, smiling doctor put it while practically doing a jig in the examining room! He said the chemo wasn't supposed to get rid of the genital tumors, but since it was, we shouldn't mess around with success.
And so I continued with the chemo, but never did have the radiation. By round four, my cervix was clean and healthy-looking, and the tumor ring around the vaginal opening was gone. There was a hard piece of tissue attached to my clitoris, but otherwise it looked normal. My doctor said he was pretty sure that it was scar tissue, not tumor, and could be easily removed surgically. I continued with the last two rounds of chemo and about a month or so later, went back into surgery. My doctor was able to remove the scar tissue cleanly from my clitoris. He also did numerous biopsies, including a cone biopsy on the cervix. Everything came back clean! I had a CT scan (my first since my second round of chemo), and the only thing left on my lungs was one tiny, pin-prick-sized dot that both the radiologist and my doctor felt was very likely scar tissue.
My GYN-ONC has been a rock of emotional support for me throughout my treatment and recovery. I love him! Not only has he gotten me through treatment and saved me from radical surgery, he has always been there to hold my hand through all my periodic little scares. A few months ago, he left his practice and moved to a smaller city to become the head of gynecological oncology at a hospital there. Even though he is over two hours away, I travel to see him. Emotionally, I just can't give him up right now. His partners are all excellent doctors, but they are just not him. I do have to have some backup support here in the city though, for emergency checks (like the time I had a pimple on my vulva...boy, was that scary!) and to get my port flushed periodically. So, I have found a local GYN-ONC who is willing to work with me AND my main GYN-ONC. I'll see the local GYN-ONC once a year and will send him all my test reports as they are available. He has also agreed to see me anytime I have problems that need immediate attention.
To date, everything continues to look clean. I have exams every few months (I just recently graduated to a four-month schedule) and CT scans every four months. My last CT scan was fine. The last two scans have made no mention of the scar tissue on my lungs, so it is very possible that it is gone. I do have some after-effects from the chemo and cancer, including occasional bouts of neuropathy and vulvadynia (a painful vulva condition with no cure, likely caused by the trauma of the cancer). I continue to drink Essiac tea every day and plan to do so for the rest of my life. Even my doctor doesn't want me to stop. Medical science has done a lot for me and my daughter over the years, and while I don't consider myself to be a "new age", anti-medical establishment-type person, my mind is open to complementary therapies, too. Since my case has been so unusual, and I am still here and going strong when by all rights I shouldn't be, "Heck", as my doctor says, "why tamper with success?"