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 . . .
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.