My Story | Marcy, Wisconsin, USA
Hi! My name is Marcy and I am 45 years old. On September 29, 1999, I was diagnosed with Stage 1b2 cervical cancer.
My story starts back in November, 1996, when I began spotting. At first it was nothing serious, just a spot occasionally after I used the bathroom. My periods had always been very regular, I never missed any except when I was pregnant with my two children. Nor had I ever had any problems with my pregnancies. Everything had always been perfectly normal with my cycles...until I started spotting.
Somewhere in the back of my head, I was alarmed by the spotting, but having a mother who is a nurse having to deal with the occasional hypochondriac, I didn't want to get overly excited. So, I made an appointment with my general practitioner. He had been my doctor for at least 15 years, and I had complete faith in his abilities. He was cautious and caring, yet he never over-treated. During my visit with him, he examined me, did a pelvic, and asked the usual questions. Then he then did a PAP smear, and said he didn't see anything out of the ordinary, but he recommended that I see a gynecologist, as that was their specialty. In a week I called for the PAP smear results. They were negative.
So, like many other busy people, I continued to work every day, putting in as much overtime as I could. I was a driven person back then. Having been a single parent for several years before I met my husband, I had experienced tough times trying to support two young children on my salary. Never having received child support, I knew it was up to me to make things work, so I dug in and worked as much as I could. As a result of those lean years, I remained in a "driven mode" that only included work, work, and more work. So it was easy to let time fly by without realizing that over two years had passed without having had my yearly checkups.
But by 1990, I no longer needed to work as much. I had gotten married for the third time, and we lived in the house my husband owned, so money wasn't a big issue. But I had gotten used to making good money, and, after being so broke when I was a single parent, I appreciated having nice things. So I continued to work 12 hours a day. A counselor I had seen for depression told me I was killing myself working so much, and that if I didn't stop soon, I would end up with cancer, or have a heart attack from all the stress. Of course I didn't listen to her, I knew how much I could take!
Anyway, after I had the PAP smear, I thought about making an appointment with a gynecologist, but we were in the process of building a new house. We closed on our old house in October, and had to live with my stepson until they finished our new house. So, in limbo, and with the holidays approaching, I finally picked the name of a gynecologist out of the phone book and made an appointment. I went to see him three hours after we closed on our new home.
The new doctor seemed kind and caring. I told him why I was there, and about the results of the PAP smear I had done in November. He said everything looked fine, but wanted to do an endometrial biopsy just to be on the safe side. He said to call in a week, and that if the results came back negative, not to worry, that it was just my age and possibly the start of menopause. I was only 41!! However, being the good daughter of a nurse, I trusted him and trusted that what he was saying was true. Inside I was a little relieved, as now I knew there was nothing wrong. A week later when I called for the results, they too, were negative. So, I just forgot about the spotting, having been assured that everything was fine.
Over the course of the next few years, the spotting continued with increasing frequency, from a spot now and then, to several days out of the month. I continued to tell myself that nothing was wrong, after all, two doctors did tests and found nothing unusual. But now, whenever I douched, I would start bleeding. Not just spotting...BLEEDING. Again The Voice in my head told me something was wrong, but every time that I heard The Voice I said to it, "Now, you know the gynecologist told me there was nothing wrong, SO QUIT BOTHERING ME!" And The Voice obeyed...for awhile.
Two and a half years passed, and my life went on. By now, the spotting had turned to bleeding that continued for at least 28 days out of the month. Bleeding that I used to deal with using a panty liner, now required the use of a tampon to stop.
Like most women do, I had several discussions with the gals at work about missed periods, pregnancies, menopause, and so forth. I mentioned that I had been spotting for two years, but that I wasn't worried about it, because a gynecologist told me not to worry, it was just my age.
In disbelief, one of the young girls in the office said, "You know Marcy, the spotting really worries me. It isn't normal. Why don't you go see a doctor?"
"Nah, I'm fine," I assured her, "a doctor told me it was just my age."
But The Voice in my head said, "Kim, you're right, this isn't normal."
After hearing a few of the girls in the office talk about a gynecologist they liked, I thought, "What the heck, I might as well make an appointment." But then I remembered that I didn't have any vacation time left...I needed to wait until next year.
"YOU MAKE THE APPOINTMENT NOW, MARCY!" screamed The Voice.
So, I finally gave in to The Voice and made an appointment with Dr. B., the gynecologist the other girls in the office were seeing. We laughed about how he would know most of the girls in our department, once I went to see him.
My appointment with Dr. B. was on a Wednesday at 10 A.M. I got the okay from my boss to take a long lunch, and told the department secretary that I would be back in about an hour and a half.
In his office, Dr. B. questioned me about all of my symptoms, and told me he didn't think that my spotting was anything serious. When I asked him why he would say such a thing without having examined me, he said that, at my age, the chances of having cancer were at least 20,000 to one. "Great," I thought, and felt stupid that I had wasted his time. He led me to the examination room, and left me to undress. When he came back in, he examined my breasts, and then started the pelvic exam.
Immediately, he said "Mmmmmmmm, your cervix is hard."
"What is it supposed to be?" I asked.
"Soft," he said, then asked, "Do you know you're bleeding today?"
I said, "Huh-lo, that's why I'm here!"
"No," he said, "you're not just spotting, you are BLEEDING." I asked him what he thought it was and, just like that, he said it might be cancer.
He told me that he wanted to examine me under a magnifying lens in another room. I got dressed, and sat in the waiting area until he could take care of a few patients, and get the other room ready. I called my boss and told her what was going on, and that I would be a little longer than I had planned. And as I sat in the waiting area, The Voice began to pray, "God, please don't let this be cancer. If you don't let this be cancer, I promise I will start going to church again, I PROMISE."
After about half an hour, I was called into another room and told to undress again. The doctor came in and examined me under a colposcope. He said he was 99% certain that I had cervical cancer!! He took three biopsies, and told his nurse to stamp "RUSH" all over the containers.
"Am I going to die?" I asked.
He responded that I should ask about the five-year survival rates instead.
And all the while, I'm lying there, thinking, "This CAN'T be happening to me!" The doctor told me he thought I was late Stage 1 or early Stage 2, but that the final diagnosis would be based on the results of the biopsies. I left his office with my mind in a fog.
I called my boss, sobbing, and told her I wasn't coming back to work that day and why. I called my husband, met him at work, and we left to go home. Shortly after getting there, my daughter came home and asked why my husband and I were not at work. I told her we just decided to take the afternoon off.
She looked at me suspiciously and asked, "What's wrong?"
"Nothing," I told her.
"You've got cancer, haven't you?" I almost fainted! How could she possibly know? She told me that her biggest fear in life was having her mother get cancer and die, leaving her all alone.
I called my mother, the nurse, and told her. She suggested calling my family doctor who had done the PAP smear in 1996, because the gynecologist said there was no way that I could have such an advanced cancer if I had my PAPs every year, like I thought I had.
I thought I had been in each and every year for my checkup, but what I found out was that the last PAP test had been done in November, 1996, and it was now September, 1999. I couldn't believe it! I then made an appointment with a gynecologist in town...one that my mom said was an excellent doctor. Because I was so upset, he got me in the next day, and confirmed what the other gynecologist said...late Stage 1 or early Stage 2 cervical cancer.
Dr. B. called me late Friday with the results of the biopsies. All indicated "poorly differentiated adeno-squamous cell cervical cancer" and I was referred to a gynecological oncologist (GYN-ONC) in a nearby large city. Dr. B. had already faxed my records, and he told me to call immediately for an appointment
My appointment wasn't until the following Monday (this was Friday) and all I wanted at that point was for someone to get IT out of me! That was the worst weekend of all...waiting and waiting for Monday to come.
Finally Monday came, and as I walked up to the receptionist's desk to check in for my appointment, I noticed a sign above her desk in big letters which read "Gynecological Oncology." I couldn't believe that I was really there to see a doctor for CANCER!!
My GYN-ONC turned out to be a wonderful, kind, caring man. He explained everything in detail, and told me I had a very good chance of being cured, depending on whether the cancer had spread (he didn't think it had). I was scheduled for a chest x-ray, abdominal CT (computed tomography) scan, and a lymphangiogram. Because of the size of the tumor, estimated to be about four centimeters (cm), he recommended that I have chemotherapy and radiation. He felt that the surgical margins might be too narrow to be curative, and that the prognosis for those treated with chemo/radiation was as good, if not better, than those treated with surgery. I opted for the chemo/radiation, and was referred to a radiation oncologist.
I knew that the next step was to determine whether the cancer had spread beyond the cervix, and that, if it had, my chances for survival were small. As I got my chest x-ray, I watched the films load onto the computer screen in front of me. My heart was in my throat because I saw a big white area in the middle of my chest and I immediately thought, "There it is, more cancer!" Trying to act casually, I asked the technician, "What is that?"
"Oh, that's just your heart," he said. When I heard that, I was so relieved; I felt my heart return to its normal position in my chest, and the blood rush back to my brain. I had thought surely I was a goner.
After the radiation oncologist reviewed my test results, I was scheduled for simulation. He recommended that I have a CT scan of my lungs because of something noted on the chest x-ray. The abdominal CT scan was "unremarkable" and the lymphangiogram didn't show any spread to the lymph nodes.
I had the CT scan of my chest done, scared of what might show up, since I had been a smoker for 27 years, stopping only after I found out I had cancer. The day before I was to start the radiation and chemo, my radiologist called me into an exam room and said, "The results of the CT scan of your chest showed some spots that the radiologists think are metastases to the lungs. I'm sorry, but if that is true, your cancer is incurable, and I cannot treat you." I thought I was going to faint. I was just starting to get used to the fact that I had cancer, that I would be treated and survive, and then to be told THAT! I cried the whole hour-and-a-half drive home.
The radiologist referred me to a pulmonary specialist who reviewed the CT scan films, and told me he wasn't impressed. He thought I had histoplasmosis, a fungus infection of the lungs, common in the midwest. Once again my heart, which had been in my throat for the last few days, fell back into my chest were it belonged. I cried with relief!
I was tattooed, and set up to start radiation. My chemo was scheduled for every Monday, and I was to have external radiation Monday through Friday for five weeks, followed by two internal implants two weeks apart. During this interval, I was to have three boost radiation sessions.
Chemo and radiation are tough. I had the hardest time with the weakness and fatigue. I was used to doing whatever I wanted, but when the chemo finally hit me, it hit me hard. At one point, I couldn't walk to the end of my driveway and back without stopping to rest. At times when I took a shower, just the weight of the water hitting me on the head, felt almost unbearable. Smells were another thing that drove me crazy. I had this horrible, gritty taste in my mouth, and I felt like I had the worst case of morning sickness possible. That lasted through the whole five weeks of treatment. One can never appreciate feeling good until you feel really horrible.
The internal radiation implants were another interesting experience...imagine being closed in a room for two days lying flat on your back. Hmmmmmmm, was I really radioactive? I must have been because right after the implant was in place, and then after they took it out, a man would come in my room with something like a Geiger counter to measure the amount of radiation I was putting off. Interesting, I thought. Have you ever tried to eat food lying flat on your back? I learned to scrape the food in, not even seeing what I was putting in my mouth. Because I wasn't very hungry, I just ate jello and fruit. And I had prepared to go to the hospital as if I were going off on some lavish vacation, putting books and magazines in my bag. Never touched either. I spent the majority of the time sleeping.
Having the implants taken out was somewhat painful. Thankfully, my doctor told me to be sure and ask the nurse for a pain shot an hour before I was to have the implant taken out. When they pulled out the gauze, it felt like someone was pulling layers of skin off the inside of my vagina. Ouch!
I finished all of my treatments on December 16, 1999, and by Christmas Eve, I was starting to feel less nauseated and stronger. I went back to work on January 3rd, 2000, and, by then, was definitely ready to return. I was very happy to be back to life again.
The year since my diagnosis has not been totally smooth sailing. The lung nodules continue to be an issue. After having several CT scans, a bronchoscopy, and a referral to a thoracic surgeon for a lung biopsy, my case was presented to a cancer review board. While the board agreed that the nodules were most probably the result of a fungus lung infection, they won't know for sure until a biopsy is done. Because the nodules are so small, they recommend follow-up CT scans every several months in the hope that a pattern will develop to prove the infection theory, or that a nodule will get big enough to biopsy.
The latest scan also revealed a previously undetected shadow on my liver. The shadow was observed on only one slide, and while they feel it is probably nothing, it needs to be investigated.
As nutty as it sounds, I am not worried anymore about my lungs or about the shadow on my liver. I have decided to move on and continue to enjoy life instead of focusing on the "what ifs." This issue may not be resolved for some time, and I don't want to spend every day worrying about what I can't change. Nothing can change what has happened in the past. I can only do my best to care for myself; the rest is in God's hands. What will be, will be. I just want to really LIVE life, and be there for others who are struggling with cancer.
Being diagnosed with cancer has been sad and terrifying, but surprisingly, a good thing. It gives one a different perspective on life. I no longer take my health, family, and friends for granted. I am truly thankful for each and every day! My goal in life now, is to help others cope with a cancer diagnosis and the difficulties of treatment. I want to help in any way I can, by being there for those that are going through this alone. I found that being diagnosed with cancer can really knock the wind out of your sails, but I was fortunate to have the support of family and friends. I cannot imagine going through it alone.
I am thankful that I found on-line support at EyesonthePrize.org, as I have received much love and support during the short time I have been a member here. God never closes a door without opening a window. Love to all and God Bless!