When I was 37 in 1993, I began to have a lot of problems with my periods.
Out of the blue, my periods began to skip every other month and when they did occur, I bled heavily with many large clots and I also had horrible cramps that made me double over with pain.
And the duration of my periods began to change as well. Before that time, my periods were always between 4-5 days each month. Now when they occurred every other month, sometimes they would only last 2-3 days but once it lasted for well over a week.
Ever since I had my first period at the age of 13, my periods were always as regular as clockwork, with no bloating, no cramps, no unusual heavy bleeding or any of the other difficulties that some of my friends had with their menstrual cycles.
So at my next yearly physical, which was about 8 months after all of this had started, I mentioned to Dr. Natalie Kelly how weird it was that my periods had suddenly changed so dramatically.
She gave me my normal yearly pelvic exam and PAP test and she also had a blood test drawn to see if perhaps my estrogen levels had changed. Maybe I was going into a very early menopause.
She also did a pregnancy test even though I laughingly told her that the only way I could be pregnant would be through another “Immaculate Conception” and I was pretty sure I wasn’t saintly enough to qualify!
I made a return visit to see Dr. Kelly in a month to discuss the test results. It turned out I was not pregnant, nor was I going through early menopause, and my pelvic exam and the PAP test were normal. Nothing seemed to explain why my periods were now acting so radically different.
Dr. Kelly then ordered an ultrasound test to be done on my uterus and ovaries just to see how they were looking. Those ultrasound test results showed that a cyst had formed on the outside of my left ovary but everything else looked fine.
Dr. Kelly said that the cyst appeared to be benign, or non-cancerous, but she wanted to keep an eye on it to see if it ever began to grow or change in any way. She said that the cyst still did not easily explain why my periods had suddenly changed. But between the two of us keeping a close eye on any other new changes or symptoms, I should be okay.
So each year I had an ultrasound test done on my reproductive organs to check on any changes, as well as a PAP test and pelvic exam. My periods continued to be more and more erratic though .
Soon I only had a period every third month then every fourth month then I only had a period twice a year. And when my periods did occur, there were many painful, debilitating cramps with copious amounts of heavy, clotty, bleeding.
Each year’s ultrasound would show that the cyst on my left ovary had grown a little bit more. Finally at the third year’s ultrasound, Dr. Kelly decided that it was now time to call in a gynecological expert to get a second opinion on what could be going on with the cyst and with the continued problems with my periods.
She sent me to see Dr. Richard Elsworth and I had deep faith and trust in him as soon as he walked in the door, looked me straight in my eyes and had shaken my hand. He immediately gave me confidence that this problem would be quickly solved and taken care of.
He gave me a physical examination and as he went through all of the blood work, ultrasound results, and other tests that had already been done, he told me that he really wanted to perform a laparoscopy, which is what I always called a surgical “lookie-loo”, on the cyst on my left ovary. Dr. Elsworth also wanted to do a D & C on the lining of my uterus at the same time because some small spots had appeared on the last ultrasound.
I was surprised to hear that because Dr. Kelly had not mentioned that there had been spots in my uterus on the latest ultrasound. Dr. Elsworth said he was pretty sure that because of my many difficulties with my periods in the past three years, those small spots were most likely just tiny pockets of old menstrual fluid that had not been properly expelled.
I then agreed with him that it made sense to do both the laparoscopy and the D & C (dilation and curettage). The surgical procedure called a D & C is when the cervix is dilated and the uterus is then scraped out and biopsies on the tissues are then performed.
He said that he wanted to biopsy the tissue in the cyst during the laparoscopy and if it looked even just a little bit irregular, he wanted my permission to remove my entire left ovary and the Fallopian tube at that time.
So I told him to please schedule the laparoscopy and the D & C as quickly as possible and that I would sign off on any consent papers he needed.
So within a month I had the laparoscopy and the D & C. Dr. Elsworth told me that the cyst was benign but that because it had wrapped and twisted itself around both my left ovary and Fallopian tube, he had no other recourse but to remove the cyst, the left ovary and the left tube.
When I asked about the D & C results, he said that the lab should be getting the report to him within a few weeks, but he was not anticipating any problems in my uterus. Dr. Elsworth or Dr. Kelly would let me know about those results as soon as possible.
I quickly recovered and I forgot about the D & C results until three months later when I had made appointments with Dr. Kelly for both me and my daughter, Tara, to get prescription refills.
Just as Dr. Kelly was getting up to leave, I asked her if she had ever heard back from Dr. Elsworth or the lab about my D & C results. She began flipping through my chart, frowning, as she said, “That’s strange, there’s no report in here at all. Well, you and Tara come across the hall to my office and I will phone the lab and that way the girls can get this room ready for the next patient.”
So Tara and I softly chatted about what had occurred for both of us at our respective elementary and college classes that day while Dr. Kelly waited on hold for what seemed to be the longest time.
Then I heard her say, “Uh-huh, uh-huh, oh, okay, go ahead and put me on hold again.” She then told Tara and I that the lab was still trying to find the report and that it might be a few minutes longer so why don’t we go ahead and just wait for her back in the examination room again, okay?
We met the nurses’ aide coming down the hall with fresh linen but we told her that Dr. Kelly still wasn’t done with us and that we were going to go back into the examination room at her request and we apologized for the mix-up.
So I told Tara to go ahead and start working on her homework since it might be a while longer but just then, Dr. Kelly came back into the room and sat down in front of us.
“The lab just apologized for not sending the results on to both Dr. Elsworth and myself as quickly as they should have in this case.”
Then Dr. Kelly leaned forward, grabbed both my hands and squeezed them. “Jeneane, I’m so sorry, but the D & C results show that those spots in your uterus are cancer cells. I just spoke to Dr. Elsworth personally and he is as surprised and flabbergasted as I am because we had both earlier agreed that if you did have cancer, it was most likely going to be in that ovarian cyst, and not in those spots on your uterus.”
Then she closely watched me as I sat there, dumbfounded and numb and in shock. I felt like my whole body as well as my brain had shut down. I didn’t know what to think, what to do, I just couldn’t absorb what Dr. Kelly had just told me.
Tara sat there, looking at both me and Dr. Kelly, not sure what to say or do either. I finally squeaked out, “I have cancer? I have cancer? Is that lab sure? I mean they sat on this report for three months! What if they are wrong, what if they got me mixed up with somebody else?”
But Dr. Kelly reassured me that even though the lab was very wrong in why this report had not been immediately forwarded to her and Dr. Elsworth, and that she would make sure that heads were going to roll at that lab about that situation, but she was also confident in this particular lab’s work. She was very confident that there was a high degree that the cancer diagnosis was correct. And Dr. Elsworth felt the same way.
I looked at Tara and I noticed her little lip was quivering as she tried so hard to be brave and I took her into my arms and told her that I loved her very much and that me and Dr. Kelly and Dr. Elsworth were all going to try our best to make me better.
Then I said to Dr. Kelly, “Oh, my God! What if I have passed on a cancer gene to Tara! But that is weird because I’ve never known any female in our family who has had either cervical or uterine or even breast cancer before. I will double-check with my mom later but what if I have given a bad gene to Tara?”
And Dr. Kelly told me, “Well how about we worry about you first and I’m pretty sure that Tara will agree with me that that is the most important thing right now” and Tara vigorously nodded her head in agreement.
I said softly to myself again, “I have cancer, I have cancer. This just doesn’t feel real yet. But please tell me what I do now, because I need to have some sort of plan to focus on. It feels like there is now a monster inside of me trying to eat me up and I just want to kill that sucker, stomp on it, kick its ass and get it out of me right now!”
Dr. Kelly laughed and said she was wondering when my normal smart-ass self would return and I grinned back at her.
She said that Dr. Elsworth’s office was going to have me come in to see him within the next couple of days and she would assume that he would recommend a complete hysterectomy and that it would be done most likely inside of a month.
I asked her if I would have to have chemo and she said that she didn’t know because everything would depend on what they found during the hysterectomy, such as whether or not the cancer had penetrated to the outside of the uterus and perhaps had spread to other areas.
Dr. Kelly gave me a huge hug and she told me to call her night or day if I ever had any more questions for her and it made me feel good because I knew that she really meant it.
On the way home, I kept repeating softly out loud to myself, “I have cancer, I have cancer” in different tones and inflections, trying desperately to make it seem more believable in any way I could.
I apologized to Tara for feeling the need to keep saying it over and over again but she said it was okay, that she actually understood why I had to keep saying it because it still didn’t seem real to her either.
My mom and all of my friends and other relatives were as shocked as I had been. I guess I had thought I had dodged a bullet when I had only needed to have the laparoscopy done that culminated in the removal of my left ovary and Fallopian tube but apparently that bullet had just ricocheted and bitten me in the butt big-time.
I saw Dr. Elsworth a few days after that and he told me that he had been just as shocked as Dr. Kelly had been to have the D & C biopsy report come back with a diagnosis of endometrial cancer. He explained that the endometrium is the lining inside the uterus.
When I asked if I would need chemo, Dr. Elsworth explained that he really wouldn’t know until after he had removed my cervix, uterus, and the right ovary and Fallopian tube and had them all tested for cancer cells before he could say what I would need after the hysterectomy.
So I urged him to get the hysterectomy on the surgical schedule as quickly as possible because I felt like I had a monster now growing inside of me and I wanted it out now, right now!
I also told Dr. Elsworth that if this had an unhappy ending, that lab was going to be sued because there was no excuse whatsoever for holding up a diagnosis of cancer for three months!
Dr. Elsworth agreed with me that that was completely unacceptable and that he had already had the director and the owner of that lab on the carpet and I grinned as I told him that Dr. Kelly had said she was going to do the same thing.
So I went over my will again, and verified that, just in case anything ever happened to me, my good friends, Noreen and Ed, would step up and would raise Tara for me. They tearfully agreed again that yes, they would be more than happy to do that because they both loved me and Tara so much. That eased my mind a lot to know that Tara would be taken care of just in case of any bad news.
Soon it was the day of my surgery. Since my surgery might take the longest of all that were scheduled for that day, it was due to begin at 1pm, after the other surgeries were completed.So I drove Tara to school in the morning and then my mom accompanied me to the hospital. She would leave when it was time to go pick up Tara after school and the hospital would keep her updated on me at home.
I didn’t make it to my regular hospital room until almost 6pm but I do groggily remember that Dr. Elsworth had said in the recovery room that based on the preliminary tests, it looked like the cancer had been in a very, very early stage and that it had not penetrated beyond the lining of the uterus. He would have more definitive biopsy results in a few more days but he was confident that everything would now be okay.
I gave him a very sleepy thumbs-up which made him laugh and I grinned back at him as I drifted back into my anesthesia-induced deep snooze.
I don’t remember too much about that first night after my hysterectomy. I remember the nurse explaining about the morphine pump that was connected to my I.V. line and I remember hitting it once that night but that is all.
I was feeling a lot more perky the next day and I even went out for a few short walks, having my I.V. pole accompany me like a faithful dog.
I had several visitors in the afternoon and I received permission to go outside with them for little walks, primarily so that I could borrow cigarettes from them and gratefully light up and reduce my nicotine cravings.
My mom was going to bring Tara up to see me after she had picked her up after school and they had had dinner. I had insisted that Tara not miss school during my operation, thinking that that would have been way too long and too hard a day on her.
I had not seen Tara since I had taken her to school the day before and I was very much looking forward to giving her a huge hug.
And since I had gone all day without using the morphine pump one time, I requested that it may as well be removed and the nurses had done so about an hour before my mom and Tara arrived.
As I waited for them, I soon realized that I had done way too much that day as I felt pure exhaustion and fatigue creep over me like the tide slowly coming into shore.
I was so happy to see Tara and my mom come in and I made room on my bed for Tara to perch on it so that I could hug her and hug her and foolishly grin at her with my joy at seeing her again. Tara and my mom made my tiredness fade into the background.
Dr. Elsworth told me again three days later when I was discharged that I had been extremely lucky because my particular type of cancer had been accidentally found so early.
He said that the biopsies showed that my cancer had been a very dangerous and fast-growing type but that the cancer cells had not penetrated through the uterine lining into any of the numerous blood vessels attached to the outside of the uterus.
If the cancer cells had entered the bloodstream, the cancer would have quickly spread to everything inside me. But my cancer had been so recently and accidentally found before it had had a chance to spread any further than just the inside of my uterus.
So I asked Dr. Elsworth, “So what happened to me was literally the definition of serendipity, right? Because you and Dr. Kelly were keeping such a close eye on that ovarian cyst, that cancer would have normally grown and spread before any symptoms could be noticed and then by that time, it would have been a much rougher and possibly deadly outcome. Is that a pretty accurate summary?”
Dr. Elsworth replied, “I couldn’t have said it better myself! Yes, it was serendipity that we found the cancer while keeping track of the cyst, and yes, by the time you would have had any symptoms or problems, that cancer would have most likely been at a Stage 4.”
Then I asked Dr. Elsworth, “So what exactly made my periods go wacky all of a sudden? Was it the cyst? Was it the cancer? Was it both?”
He explained that he had presented my case to several of his colleagues and none of them could figure out either exactly what was the cause of my original complaint about my periods skipping months and becoming unusually painful.
Dr. Elsworth said that the left ovarian cyst, at the time it was first tested by ultrasound, was not enough on its own to cause those problems and the cancer cells did not develop until the third year after that so that could not have been the cause for my problems with my period.
He said whatever was the cause for my period problems was another serendipitous situation because without that first complaint of mine, the doctors would most likely have not found the cancer in time.
Dr. Elsworth also said that he had been consulting with an oncologist (cancer specialist) from the moment we had learned about the cancer cells. The oncologist was pretty certain that having a complete hysterectomy had taken care of the cancer situation.
But just to be on the safe side, the oncologist wanted me to have special blood tests, a pelvic exam, and a manual exam of my breasts done every three months for three years. He didn’t believe I would need any form of chemotherapy unless the cancer did spread somehow.
The oncologist had said that if the cancer were to return, it would be detected in the blood work and that it would most likely come back as breast cancer. He also wanted me to begin yearly mammograms as well.
I was suddenly overwhelmed with the full realization of how damn lucky I was that the cancer had been found so early. Then I felt humbled and even more gratified when I thought of the too many other women who had died of uterine or ovarian cancer that had been detected too late.
There is only one test to detect cancer in a woman’s reproductive organs and that is the PAP test. But that test only detects cervical cancer and there were no tests for uterine or ovarian cancer.
I started crying from too many overwhelming emotions and from the relief, guilt and tension from this whole ordeal. Dr. Elsworth gave me a big hug and then he grabbed Kleenexes for me.
Every three months for three years after that I saw Dr. Kelly to get my breasts, blood, and pelvic checked. Normally doctors’ offices do not notify you about the results of tests if they are normal or negative; the theory is that no news is good news.
But when I asked Dr. Kelly if there was any way that she or one of the nurses could please call me and let me know about the test results being done every three months, I would be so appreciative!
I explained that the original delay by the lab about the cancer cells had made me very anxious that another delay about a return of the cancer could turn out to have a much worse ending. So until I actually heard about the latest test results, I felt like I was holding my breath and that tension was making me even more stressed.
Dr. Kelly exclaimed, “Oh, Jeneane, I will personally call you and let you know what the test results are every three months and your feelings are perfectly understandable!”
So I held my breath four times a year, hoping that each test result was normal. And I celebrated with my family and friends at the end of the three years when I was officially declared cancer-free!
I was extremely lucky and I knew it. Each doctor I have had since then for different medical problems has also told me how lucky I was when they reviewed my medical records.
I was extremely lucky in other ways as well. Normally having a total hysterectomy as early in life as I did would have thrown my body into a confused menopausal situation, with hot flashes, mood swings, etc.
Dr. Elsworth had prescribed estrogen pills for me but I weaned myself off them after the first year when I discovered that this particular brand of estrogen was made from pregnant mares’ urine and that the horses were deliberately kept dehydrated to concentrate the estrogen better.
I have always loved horses and that was such a cruel and inhumane way to manufacture estrogen that I refused to give that company any further profits.
But luckily, I had no problems with any kind of menopause symptoms, then or later on. What a bonus! No more periods, no more hassles with tampons or pads, no hot flashes or mood swings!
On the other hand I did have to have cancer to get to this bonus point, but hey, so far, I was not complaining about the end results!
However, I do not like being called a cancer survivor because I did not have a hellish time. I did not have to do chemo, and my cancer was luckily found so early that the hysterectomy took care of it.
I feel that the only things I “survived” were two surgeries. Yes, I had cancer. Yes, it felt like there was a monster inside of me but I do not feel that what I went through qualifies me as a cancer survivor when so many other people have suffered and endured so much worse than me.
But, having such an experience still made me greatly appreciate how truly lucky I was: in life, in friends, in loved ones, in great doctors and also with the further proof of how strong I really can be when I necessary.