5/30 – 6/3/13 Thursday-Tuesday: WHY WAS I SENT HOME????
The next six days were spent mostly in a haze of pain, trying to stay as still as possible and occasionally having to shuffle off to the bathroom, one inch at a time, bent over like a soldier holding his guts in on the battlefield. The ER doctors said I would be in pain, but did they not realize how much pain that would be? Is my 8 only a 4 in the ER?
I did want to let my family doctor, Dr F, know what had happened in the ER, so I decided to swallow my fear of being THAT patient and call him on his cell phone. I have had the same family doctor for 22 years, since my first year of teaching. He knows everything about me and is always accessible. I saved his phone number the last time he called to check up on me, thinking I might need it one day. That day had arrived.
Dr F was happy to hear from me and assured me he would get copies of the tests that were run in the ER and let me know the results. I was especially anxious to know if the CA-125 tumor marker test showed any elevated numbers, which might be indicative of cancer.
He strongly recommended that instead of going to the hospital clinic I see a Gynecologic Oncologist he had sent patients to in the past at UT Southwestern Medical Center. He said if there was any chance this could turn out to be cancer he wanted me to have someone doing surgery who specializes in this specific area. He promised he would make an appointment and get back to me.
He asked if I was in pain and if I was eating. I had to admit, the pain was so strong it completely took away my appetite. When I told him the ER had prescribed ibuprofen he said, “that wasn’t very nice of them,” and called in a prescription for Hydrocodone.
The Hydrocodone was like manna from heaven. It enabled me to eat a little soup and crackers, and I could walk a little straighter. It also knocked me out, and the rest of the day was a mixture of falling asleep, trying to get comfortable on the couch, trying to focus on the words on the page in the book I was reading, and worrying about the future.
Dr F read the results from the CA-125 tumor marker test. When I asked about it he said he didn’t have much faith in the test, that it’s really only effective during chemo, for instance, when the numbers can be compared each time it’s given to see if cancer is more or less prevalent during treatment and after a specific amount of time. His answer signaled to me that the numbers were elevated and he didn’t want to alarm me. Even if he didn’t have much faith in the numbers, if they were low he would have told me. I didn’t let it bother me, but it was a red flag.
He was able to contact the new doctor, Dr K, and it was a testament to her dedication that she left surgery to take his second call after she heard my symptoms. She said she would be happy to see me in her office on Tuesday, the earliest day she could see me, to discuss what was going on and to schedule surgery, but she also stressed that if the pain became unbearable I should check myself into the hospital for emergency surgery. My personal preference was to avoid another emergency room visit and to see her and have a planned surgery, so I planned on hunkering down for the next few days and gutting it out until I could see Dr K.
Armed with hydrocodone, heating pad, cable TV, and my iPad, I did nothing but rest. I tried to eat, but all I could muster was Saltine crackers and clear soups.
6/4/13 Tuesday: THE DAY THE WORLD STOPPED SPINNING
I woke up at 3:23AM and could not fall back asleep. Without waking Michael, I plugged in the heating pad and searched the internet on my iPad for a blog to read to learn more about ovarian cancer. Thankfully, I found one that was good enough to keep me preoccupied until Michael got up at 7:30AM.
The entire day felt like a dream. After phone calls back and forth about the new doctor needing a copy of the CT scan and ultrasound films, packing a small bag to take “just in case” they decided to keep me overnight, running over to Methodist Radiology to pick up the disc with the CT scans, and trying to eat some chicken noodle soup (deliciously salty), I felt numb.
Picking up the disc from Methodist was incredibly easy. Traffic was insane. I had about forty-five minutes of waiting at home before having Nick and Nicole drive me over to the cancer center. I sat in silence. I felt like I was going to my own execution. I was filled with dread with what Dr K might tell me.
Would I find out today that I probably had cancer? Would I be told that I was going to die soon?
I felt like I was standing on the edge of a mass grave, one filled with the bodies of millions of women, all killed by cancer. A female holocaust of ovarian cancer.
I felt separate from the outside world, apart from everything around me. I felt different, an outcast. There’s a killer inside me, I thought.
I felt like I did when I finally decided to ride the double loop roller coaster at Six Flags with my son when he was in high school. Just like on the roller coaster as it reaches the top of the first hill before the steep plunge into the loops, in that moment of accepting you have no control, I would have paid anyone any amount of money to stop the ride and let me get off.
I felt trapped. No escape.
I felt that, no matter what, it was completely out of my control. There was some peace in acknowledging that, in allowing myself to let go of the branches from the side of the riverbank and glide down river.
The drive over was very quiet. One of my current favorite songs played on the radio (“Safe and Sound,” by Capital Cities), and I took it as a good sign. Two more high energy songs came on afterwards and it had an immediate effect on my mood.
We pulled up to what felt like a luxury hotel. Valet parking, circular stone driveway, and a massive, amazing Chihuly sculpture in the lobby. I immediately regretted never making it over to the Chihully exhibit at the Arboretum last year. Oh well, I thought, at least I got to see this one.
The waiting room felt alive. It was noisy. There were a lot of people, but everyone was talking, laughing, smiling. I wondered how many of the people sitting there had cancer. Maybe they were all actors, hired to sit there and look happy and alive, to give the real patients some hope.
I noticed a sign on the table which said, in big letters: If you have to wait longer than 15 minutes, please tell the receptionist. I was impressed. Sure enough, within eight minutes or less, barely diving into the four page health questionnaire, my name was called. My weight was taken, blood pressure taken (116/78), and we were shuttled back to an exam room where I continued to fill out the form. Dr K walked in less than three minutes later and introduced herself. She needed the form to be completed right then, my husband probably didn’t know where to find us, and I was stressed from the extreme efficiency of the office! She left to find Michael and returned, hubby in tow, just as I finished filling out the questionnaire.
I immediately felt at ease with Dr K. She spent perhaps thirty minutes asking me in depth questions about my medical history, then about what specifically led to last Wednesday’s ER visit. She wanted to hear everything about what might be the cause of the cyst, and seemed genuinely excited by the mystery of trying to figure out exactly what this thing was.
For the first time in the past two years I feel like someone really listened to me about the confusing menopausal symptoms that have plagued me. One overarching trend I’ve noticed in my internet research has been how the majority of women feel no one is listening to them about their problems and issues. They mostly don’t feel like they’re being taken seriously. I’m glad my son’s girlfriend has been able to go through this with me so she can learn how to stand up for herself if she one day has to go through something similar.
THE PELVIC EXAM. OMG.
(WARNING, MEN! Uncomfortably graphic description of a pelvic exam involving lady parts!!!)
Wednesday’s ER pelvic exam was uncomfortable, but this was ten times worse. No matter where Dr K touched, it hurt. She did a full pap smear, scraping and all, then the two worst things you can imagine (or maybe you can’t): the Absolute Fist Clencher–two fingers inserted into the vagina with her pushing around on the belly and along the vaginal wall and cervix, and the Muffled Scream Move–one finger inserted into the vagina and one finger inserted deeply into the rectum.
Y’all. I am no sissy when it comes to pain. I run marathons. I had both children naturally, sans drugs. I suffered almost every single month from the ages of 14 to 23 with menstrual cramps so bad I would vomit at school and be sent home to wallow under a heating pad for the rest of the day. THIS was worse. Far worse. It was almost unbearable, and I was so embarrassed to react the way I did. I felt bad for Dr K because she kept apologizing for causing me pain, and I kept apologizing for how much noise I made.
After the Muffled Scream Move she shut down shop and stopped the torture. The next person who comes close to touching my pelvis again better have a knife in her hand and and a mask on her face or I just might lose it.
After this she showed us the scans of the cyst on her computer. Once she explained what we were seeing, it was easy to see what all the fuss was about. Holy Toledo, it was massive. To me, it looked like a big piece of chicken shoved in between my hip bones, my stomach wall, and my spine. No wiggle room. No empty space. Packed in tight.
She said it was too bad her research students weren’t with her that day because it was such an instructive case. I liked that she was excited about figuring out what this was. She was like the CSI inspector of ovarian masses and my abdomen was the Murder Mystery Theater.
We scheduled the surgery for Friday afternoon. She didn’t want to wait and do a colonoscopy first (boy was I glad). She had three small procedures in the morning and said it worked out perfectly in her schedule. Because of the size of the mass, it would not be laparoscopic surgery. In fact, the scar would be quite large. Bikini season is over for this middle-aged mama. Maybe I will get a cool Jack and the Beanstalk tattoo to cover the scar.
She will be removing both ovaries. I had been hoping to save one of them, but she says it obviously isn’t working anyway and will only cause problems in the future. I may be in the hospital up to five days post-op, then more recovery time at home. I mentioned how training for Marine Corps Marathon begins at the end of June and she laughed at how we runners are “all the same.” Everything is contingent on what they find in surgery, but I could be running again within several weeks after surgery. But she emphasized that I will be very, very slow. Pace is completely irrelevant to me at this point. My goal is just to run again one day. Running Marine Corps would be nice, but I’m not going to push it.
We met her nurse and they gave me all their contact information. Once again, these women are organized. I can reach them online, by phone–they are always accessible. Very reassuring. We went over pre-op stuff (I will come back in on Thurs to meet the anesthesiologist and go over surgical stuff.) No solid food on Thursday, an enema Thursday night and Friday morning.
When we walked back out to the waiting room all the laughing families and happy cancer patients were gone. She had taken as much time as we needed with her. She wanted to check the tumor markers again, and five or six vials of blood were drawn.
I went home a completely different person. I felt upbeat, optimistic, almost giddy. Dr K made me feel that much better. I had gotten a few texts from my close friends during our long appointment, so it was time to start calling folks back and telling them the news about the impending surgery.
After dinner I called my daughter, who said I was “chirping like a little songbird.” Not quite, but I felt better than I had in a month, and I could see a light at the end of the tunnel. I debated posting something on Facebook, not wanting to look like I was trolling for sympathy or pity, but because I knew that my friends’ support and love would hold me up during the tough times ahead. I went ahead and posted a few details, asking for everyone’s “prayers, positive thoughts, and energy vibes,” and it was the best thing I could have done.
Later that night, I fell asleep on the couch while watching TV with Michael and Nicole. I was exhausted, and slept like a rock, waking up occasionally, not believing I couldn’t keep my eyes open. I groggily checked my email when Michael went to bed and was brought back to reality when I saw all the Facebook messages from my friends and family.
Oh yeah. I’m having surgery on Friday. I forgot.
Embracing the fact that my sleep patterns have been all over the place this past week, and acknowledging that I get NO writing done when either of The Talkers, Michael or Nicole, is awake, I sat in bed and wrote for an hour or so while Michael slept. I’ve been writing a lot the past two days, and writing helps. For some reason, when I’m anguished or in trouble, I need to write. That’s when I truly find my voice. It’s what got me through childhood, adolescence, and my divorces. Writing and reading in the late/early hours of the day, when the world is quiet and everyone else is asleep, is my salvation.
Finally we had a plan to remove the tumor and get rid of the pain. I had two days to wrap my head around the idea of surgery, to get caught up on some writing, and to get my things packed.
Or did I?
To be continued . . .
The emergency room of any hospital is a strange place. Ask anyone who has been there. The kids dropped me off at the ER and I walked in to register. I was relieved to see only one other person waiting. I was in so much pain and my hand was shaking so much I couldn’t fill out the registration form. I had to ask the nurse if she could fill it out for me. I slumped over the edge of the counter as I gave her my personal information.
I spoke to the check-in nurse briefly, gave all my insurance info to another woman, then waited some more. We probably waited an hour, and the ER waiting room slowly filled up. I enjoyed looking at the clothes people wore to the ER. There were a lot of track pants, but also a surprising number of six inch heels and tight, short, hoochie mama dresses. I bet there were some good stories connected to those clothes.
We were finally called back and told that all the rooms were full, was it okay if they gave us a curtained off area along the hallway? I laughed and asked if we really had a choice, and she said some people actually choose to wait for a room. I guess some emergencies are more private–and urgent–than others. My curtained cubicle was not bad, situated right across from the main nurses’ desk, and I asked to leave the curtains halfway open so I could see what was going on around me. No chairs are allowed in these cubicles in the hallway (fire hazard), so Nick and Nicole squeezed onto the end of the bed with me. I was just glad to be in a bed. The pain was definitely an 8 by now.
A nice nurse gave me a gown and a warm blanket, and a young paramedic put in an IV. It took two attempts. Ugh.
By far the worst part of any trip to a hospital, for me, is putting in an IV. They are not fun. The worst location to have one put in is on the wrist or top of the hand. No matter where they put it, it hurts. Maybe my abdominal pain was enough to divert my attention, but it really didn’t hurt too much this time, despite the fact that it took two attempts. The nice nurse came and asked the young paramedic why it didn’t work the first time, told him to “push right on through the valve,” and stood by for assistance on the second arm. I could tell he was a little nervous because we were all watching him.
More waiting. Dr H introduced himself, pushed at my stomach near the belly button telling me it sounded like diverticulitis, then frowned as I guided his hand down to the actual location of pain and told him my hormonal issues from the past few months. He didn’t seem convinced that it was anything other than diverticulitis, and eventually I was wheeled off for a CT scan–for the first time ever without having to drink the dreaded 35 ounces of contrast liquid. I guess I talked about hating it so much that they took pity on me. I sent the kids off for some lunch for themselves while I had the scan.
The man who wheeled me down to the CT room asked if I had ever had diverticulitis before, then was amazed when I told him I’d had the rare duodenal form twice. He literally oohed and aahed. I think it made his day. He didn’t know why they were doing the scan without the contrast, checked to make sure they weren’t making a mistake, then had me slide across the bed to the big donut-shaped tube. I took a few deep breaths when my old familiar buddy, British Accent Man, told me to, and then it was back to my “room” to wait for results.
The nice nurse came by a little later with something for the IV. When I asked her what it was she told me saline, because the doctor thought I looked a little “peaked.” Oh, and this little vial here that I’m inserting into your IV? Morphine. Morphine! The effects were almost immediate and the pain subsided to about a 3. It was the first time I’d felt comfortable all day.
Dr H eventually came by with results from the CT scan. I had a cyst on my left ovary. A 10cm, “complicated” cyst. He said because of its composition (fluid and solid particles) and size, he was going to call someone from gynecology to come down and give me more information. Though he said it was too soon to start worrying about cancer, he admitted there was some cause for concern.
A cyst the size of a grapefruit. Well, hello, my little friend. This explained a lot about the bloating, tight jeans, and frequent trips to the bathroom.
I was calm. I was relaxed while I took in the news. I felt a slight sense of satisfaction that I was right about something being wrong with my hormones and ovaries these past few months. The idea of cancer, however, had never entered my mind. I told the kids I wasn’t worried at all, that except for the excruciating pain in my belly I felt strong and healthy. I ran marathons. I was thin. I had had two children. I breastfed both for a year each. I had none of the risk factors and no family history. I didn’t feel seriously ill in the least.
The gynecologist (or gynecological nurse, I’m not sure which) came down and explained more, telling me they wanted to run some tests to rule out all the “bad stuff” first. She said it didn’t mean there was anything to worry about, they just wanted to rule out the bad first and go from there. She asked me a lot of questions, then I was wheeled off to an examination room for a pelvic exam, which another gynecologist performed.
She was nice, but her cool demeanor wasn’t very calming. She seemed a little stiff and nervous. She spoke to me about torsion, which is when a cyst twists on itself and cuts off the blood supply to the ovary–which is “very bad,” though she didn’t explain why. She told the nurse to bring a pap smear kit, and I asked her if that was necessary since I’d had a hysterectomy five years earlier. Oops. She admitted she forgot I’d had a hysterectomy and apologized. Everyone makes mistakes, but it made her lose a little credibility in my eyes. Both doctors did a pelvic exam. This was not comfortable at all, even with the morphine. She said my stomach wasn’t too tight or hard, which was a good sign, and she didn’t think there was any torsion.
The cyst and ovary would definitely need to be removed, as soon as possible. She asked if I wanted my doctor to make all the arrangements or if I wanted to come to the clinic across the street. Maybe it was the morphine, but this is where I kind of spaced out. I wondered why my family doctor would need to be informed when he’s not a gynecologist, so she said she would schedule an appointment for the following Monday in preparation for surgery and that they would call me (they never did). Monday was still five long days away . . .
We were finally given our own room with a teeny, tiny TV monitor on a long, expandable arm that my son had fun annoying us with, and three chairs. Michael arrived from work, and we saw on the TV that it was storming outside. We heard nothing inside the hospital, and I was sorry to be missing a good thunderstorm. I thought about the dogs alone at home, who hate thunderstorms.
The nice nurse asked if I’d ever had a transvaginal ultrasound before, then told me about the grapefruit sized ovarian cyst she’d had years ago. She called hers a “chocolate cyst” based on the color of the fluid. Hers was removed, was noncancerous, and she went on to give birth to a son three years later. She knew all about the pain I was going through.
A CA-125 blood test was given to test for tumor markers, then I was wheeled off again for an ultrasound. First the technician tried on top of my abdomen, but she said there was so much fluid inside my abdominal cavity she was having a difficult time finding either ovary. I asked if that was a bad thing, to have fluid in the abdomen, and what it meant, but all she would say was that it could mean different things. She next did a transvaginal ultrasound which gave her slightly better results. Both procedures were uncomfortable but not painful. The technician was very quiet and made almost no small talk, which was not very reassuring.
After getting to the doctor’s office around 11:00AM, and the ER around 1:00PM, by the time we left the hospital around 7:30PM it had been a full day. The young paramedic removed the IV shunt while I joked about him leaving it in and giving me a vial of morphine to take home with me. Trainspotting Mom! Maybe my joking waved a red flag because I was sent home with nothing stronger than prescription strength ibuprofen (800 mg).
I felt I was leaving the ER with more questions than answers. I had a large ovarian cyst. It could be cancerous. It would have to be removed, along with the ovary and possibly the other ovary as well, no matter what the CA-125 blood test showed. I would still be in pain for the next few days.
In the meantime, the morphine was starting to wear off.
To be continued . . .
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 . . .