I am one of those people who probably tells more than they should. If I were a celebrity the tabloids would love me. I can be brutally honest, and I don’t care much what others think of how I live my life.
Last week something happened to me, something you might consider a “life changing event.” I was diagnosed with ovarian cancer.
This is my story. It’s long, so I’ll be telling it in segments. And stay tuned. Despite the inevitable ending (the same ending you will have one day as well, my friend), I plan on being around for a long time:
5/29/13, Wednesday: THE BEGINNING
I turned over in bed and felt a sharp twinge of pain in my abdomen. It was Tuesday morning. It was as simple as that.
I got up, ate an early lunch, and felt nothing the rest of the day.
The next morning the pain was back, only worse. I could barely walk to the bathroom. I had to sit on the bed while I brushed my teeth. It felt suspiciously similar to the duodenal diverticulitis I’d had twice in the past seven years, with the last episode just a year ago, only this time it was in a different location and I felt nauseous. I knew the drill: CT scan in the emergency room and antibiotics with lots of bed rest at home.
I called my doctor’s office, and they said they would fit me in. I took a quick shower and woke up my son and his girlfriend. The pain was so intense that I knew there was no way I would be able to drive myself.
In the back of my mind, I wondered if there was any possibility of this being related to some annoyingly odd issues I had been having. For the past four months I had been telling anyone who would listen, including my doctor and dermatologist, that something was out of whack with my hormones. I had been experiencing extremely oily skin, unrelenting acne, and hair loss. In addition, the last two months it dawned on me one day that I often felt full after three bites and that I was going to the bathroom a lot more frequently than normal.
My doctor said it was almost certainly related to too much estrogen, and advised I stop taking the estrogen patch he had prescribed six months earlier for some extreme menopausal symptoms I had been experiencing (mainly hot flashes and depression). The dermatologist told me acne was essentially incurable, then rattled off a long list of possible treatments, and we decided on a benzoyl peroxide facial wash, Pan Oxyl, a thin layer of Finacea each night (which the box says is for rosacea, something the dermatologist never mentioned), and some type of pill to be taken that might kick the acne out of my system. I discovered at the drugstore that this pill was not covered by my insurance and would cost $1,000 out of pocket for 30 pills! Um, no. I was frustrated. I wanted to know why this was happening, not just what to do about it.
The benzoyl peroxide was harsh at first, but I did notice results, and the Finacea also seemed to make a difference. I continued to have breakouts, and they were the deep cystic kind of zits, but repeated dabbing with some Neutrogena Fight and Fade gel usually helped them heal quicker. Despite washing my face sometimes three times a day, every morning there would be a new crop of zits on my chin or along my hairline.
Even more distressing was the hair loss. I have always had very thick, fine-textured hair, so there was plenty of hair to spare before the hair loss would become noticeable. Also, I could wash my hair in the morning and it would be greasy by the end of the day. I felt like I was 14 again. I tried shampoo after shampoo, looking for something that would keep it from getting greasy so quickly, but without drying out the ends.
I was frustrated and felt mildly unsettled after seeing my doctor and dermatologist, as if my concerns were somehow not being taken seriously. Both doctors are excellent, but it all just played into my general unsettling sense of becoming more invisible to society the older I get. Of course acne is not life threatening, but I had just turned 53, dammit, and had already paid my dues years ago on that front! The hair loss was even more distressing, and I had visions of myself turning overnight into an old, hunched over, white haired crone with hair so thin you could see through to the scalp. I had a cane and was chasing kids and dogs off my lawn. I might even be missing a few teeth.
One day, while playing Super Sleuth on the internet to find a reason and solution for the acne, I ran across a comment by someone who said her sister had suddenly begun having horrible acne in her 40’s, went to the gynecologist for a regular check-up, and was told “after one look” that she had ovarian cysts. That one comment was enough to peak my interest enough to start reading about ovarian cysts and cancer.
I did some digging and discovered ovarian cysts can indeed cause some of the same symptoms I had been experiencing, but there was very little real info to be found. Most sites didn’t even mention acne or hair loss in conjunction with ovarian cysts. If this one comment was legit, it was the first time I had heard anyone make that connection. And if it truly was a possibility, I knew it could be a player in the new pain in my lower left abdomen.
The doctor’s office was thankfully not very crowded. The only other person waiting was a fabulous looking 78 year old woman with thyroid cancer. She shook her head slowly, smiled, and told me, “These doctors just take your money and create new symptoms to keep you coming back. It’s all about making money.” Then she talked about the coming rapture and how she’s “seen it all coming” since she was a little girl in church. I steered the discussion towards politics and Obama, and we both agreed on how disappointed we had become in him. I mean, how DOES one deflect talk of the rapture in a doctor’s office waiting room? And I loved my doctor and didn’t agree that he just wanted my money.
In the meantime, I half sat/half reclined and felt nauseous. All of the pain was centralized in one location, but it affected my entire abdomen. All I really wanted to do was find a bed.
After they called me back and weighed me, I had the sudden urge to vomit. I ran to the bathroom and made it just in time. Since I hadn’t eaten anything all day, it wasn’t bad. But I still felt nauseous.
My doctor’s initial conclusion was that it was probably diverticulitis, only this time in the colon where most people have it. When I asked about the possibility of an ovarian cyst, he admitted that could also be the cause of the pain. By this time the pain was severe.
He recommended I check myself into the ER for a CT scan. He also thought my pain was bad enough that they would want to admit me into the hospital, but I had no intention of letting that happen.
Diverticulitis is fairly common, but duodenal diverticulitis is not. The first time it appeared it caused a five day stay in the hospital. The head of surgery had no idea what the large mass on my duodenum was, only that it was a large mass and it was causing an infection. He didn’t want to operate because of its size and the possibility of bursting, but he knew that it wasn’t cancer. I stayed hooked up to an IV with all food and and liquids delivered intravenously for the entire five day stay. I had all kinds of GI tests run after the mass healed but no one could figure out exactly what “it” had been.
When it happened again last year, six years after the first time, the ER staff took another CT scan and compared it with the one from six years ago, which showed the lesion in exactly the same spot. A doctor young enough to be my daughter made an immediate diagnosis of duodenal diverticulitis, which is apparently rare enough to explain why no one figured it out the first time. I was sent home with a round of antibiotics and was up and running again within ten days.
So it was off to the emergency room again, just over a year since the last visit. My doctor is kind and caring, but I was embarrassed when he insisted on one of his nurses wheeling me out to the car in a wheelchair. I hate being fussed over and drawing attention to myself. I run marathons! I’m tough! I could do this on my own!
To be continued . . .
The day after I wrote my previous post on death, I found myself in the ER. Coincidence? Karma? Jinx? More like bad luck and the reappearance of something that no one could explain six years ago. At least now: mystery solved.
Six years ago I landed in the ER, then spent five days in the hospital. Imagine the head of surgery coming to you and saying: The good news is: it isn’t cancer. The bad news is: we really don’t like to operate there, we have no idea what it is, and we have to admit you immediately.
I hadn’t been scared until he mentioned the c-word, and realized I probably should have been. Things could’ve been much worse. In the end, after five days in the hospital hooked up to an IV with no food or water, and after numerous tests, all they could say was they didn’t really know what it had been and hopefully it would never happen again.
It was just one of those freaky things that sometimes happen to people.
Fast forward six years to last week when a slight stomachache turned into pain and fever again, in exactly the same location. This cannot be happening again, can it? It must be something different! Of course I did what I always do when I need answers: I went straight to the internet. After ten minutes of peering intently at diagrams of the human abdomen, I knew I needed to call the doctor. Since I knew it couldn’t possibly be the same thing as before, this time I feared cancer–or imminent death.
I called my doctor.
I loaded up the Kindle and iPad and headed to his office. I knew this wasn’t going to be fun and would probably take all day, if not longer. If it was anything like last time there would be needles involved, and plastic-tasting liquids ingested, and hours and hours of waiting. And worrying.
I’ve had the same doctor for over 20 years. He knows everything about me. He said it was too coincidental that it was in the same location, and even if it wasn’t related the fever and pain pointed to something potentially serious. He wanted me to have a CT scan right then, and called ahead to the same ER I went to six years ago.
The ER? Seriously? Now the dollar signs appeared above my head. How much is this going to cost me? What is my ER deductible?
Even worse, how long will this keep me from running? I was training for a marathon, dammit! I hadn’t missed a day on the training plan yet, and my running was going really well!
I drove myself to the ER, all alone and feeling pitifully sorry for myself. I texted Michael and told him not to come meet me until he got off work and fed the dogs first, that I already knew the drill and there was nothing he could do to help. I had my iPad and Kindle to keep me company.
The ER waiting room looked like a Greyhound bus station. There was the ubiquitous TV playing a rerun of House or some version of CSI, and almost every chair was taken. There were entire families camped out, people hunched over asleep, people in wheelchairs and face masks, and lots of empty snack bags and Coke cans on the floor. There was a mix of ages, but the majority of people were old. And very poor. Strangest of all, people were talking. There were conversations going on about the most mundane things, laughter, jokes being told. Watching the people around me did not keep my mind off my worries. What stories do these people have to tell? What are their lives like when they’re not sitting in the ER?
I waited. I had a sudden, overpowering urge to casually walk out to my car and drive home. I wanted to curl up in my bed and draw the covers over my head. I wanted to be anywhere but there.
Six years ago the ER waiting room was empty and I was hustled back to a “room” almost immediately. This time I sat for almost an hour on a cold, uncomfortable plastic chair before I was called back, and I barely managed to get a curtained off spot in the hallway just big enough for a bed because they were so busy. My blood pressure was taken for the fourth time that day, I was given a gown, and I met the doctor on call who, after some gentle nudging on the area of pain, told me a CT scan was indeed in order.
I was hoping he wouldn’t say that. A CT scan meant an IV, and I hate IV’s. But once that was taken care of (and it really wasn’t too bad this time), I relaxed. I realized things were out of my control and I would deal with whatever the CT scan showed. If it was cancer, I would deal with it. If it was the mystery thing from six years ago, I would deal with it, too. I had lots of time to think about all this while I drank the Slurpy-sized container of plastic-tasting contrast liquid, then the two hour wait while it made its way through my body. Michael showed up just before I was rolled away for the CT scan. He immediately took command of the iPad and made himself comfortable on the floor.
The ER isn’t always like you see on TV. There was no screaming, no blood, no doctors running down the hallway screaming, “Stat!.” It was fairly quiet, even though nothing separates you from the other patients but sheets. Since I was in the hallway I saw everyone who walked or rolled past. All of the doctors and nurses seemed so young, but most of the patients were very old. I had the feeling most had been there before and used the ER as their primary care physician. I heard the doctor explaining to the woman next to me (who had a CT scan for what turned out to be a urinary tract infection) how he could only give her a prescription for pain medication for two days, otherwise “we’d have every person in the city coming here for pain pills” (which is something I’d never thought about before). He advised her to see her regular doctor if she needed more.
It’s the not knowing that is truly the worst. And the waiting.
We waited a long time to hear the results. We played Yahtzee. We talked. We listened to other conversations around us and I smiled encouragingly at other people being wheeled down the hall for tests. Everyone looked scared and uncertain, just like me.
Finally, a new young doctor appeared. After comparing the CT scan from the one taken six years ago, and ascertaining the problem was indeed in exactly the same location as before, the doctors could now determine what was going on. This time I was given a prescription for two types of antibiotics and a painkiller and instructions to eat only broth for a few days, then slowly reintroduce solid food. I could run again when it felt comfortable to do so. Now I knew what “it” was, that it’s something the doctors rarely see and is the reason why it wasn’t diagnosed six years ago, and that it can be treated. It wasn’t cancer and was nothing that required surgery or a hospital stay. A day’s worth of anxiety slowly seeped out of me, and suddenly I was exhausted.
Before I left, a nurse took my blood pressure yet again. Then she took it again. And again. Finally, she asked me, “Are you just a healthy person?” I told her I ran a lot and she was satisfied. It seemed strange to be asked that question in the ER, but was also a good note to go home on.
I feel very fortunate that it wasn’t something worse than what it could’ve been. Eating broth for a few days is no fun, but it’s a small price to pay. There are so many others who go to the ER with much worse ailments than mine, and sometimes the news is life changing (or ending). My day in the ER gave me a lot of time to think, about my health and my life in general, and I can’t help but know how lucky I am. I say it all the time, but things really can change in the blink of an eye. Simply put, don’t take your health, or your life, for granted.