6/7/13 Friday: RELEASING THE MONSTER
On the morning of surgery I woke up at 3:30am, more than likely because someone came to take blood, my temperature, or my blood pressure. The nurse said they wanted to do an ultrasound on my legs before surgery to see if there were any more clots. They had scheduled me for 5:00am, but had asked if they could go ahead and get me early since they were very backed up. Since I was already awake, I didn’t mind at all, so I pulled out my iPad and checked emails until they came to get me. In reality it would be 5:00am before they actually got to my room.
Despite the fact that I was going to have major surgery later in the day, I felt great. The song Safe and Sound (Capital Cities) was playing incessantly in my head. I had started hearing the song on the radio a few months earlier and loved it, and we heard it in the car on the way to our first meeting with Dr K. It was always in my head in the hospital, and the morning of surgery I played the YouTube video and posted it on my facebook wall page, asking everyone to play it and sing it while I was in surgery. It had become my own personal anthem.
Being in the hospital had made me start to think of the tumor as being something from the movie Alien. I have no idea why this was. I really didn’t have any bad feelings towards the thing, but I did keep envisioning that scene from the movie where the alien pops out of the guy’s stomach, slimy teeth and all. I started thinking of it as the Alien Monster Baby.
Dr L came by later in the morning. Dr L is very serious and very matter of fact. I made it my personal mission to catch Dr L off guard, ask him random questions, and make him laugh whenever I could. Since I had just posted the Safe and Sound video as my personal anthem, I asked him if he listened to music in the operating room. He said sometimes, depending on the type of surgery and the procedure. I asked him what kind of music they played. He kind of smirked and said the technician played Top 40. I really wanted to ask him what kind of music HE listened to, but thought it might be too much.
He tried to escape, but I wasn’t done. When getting my ultrasound at 5:00am, and calculating how little sleep I had gotten (again), I had thought of another random question that would be perfect for Dr L: If I got three hours of sleep last night, and the surgery lasted five hours, would that count as my eight hours of sleep for the day? He shuffled and looked away nervously, laughed and said, “No, those are two completely different kinds of sleep,” and left as quickly as he could get out of the room.
Dr L is my very own personal Christina Yang from Grey’s Anatomy.
I felt anxious but also relieved that the tumor would soon be removed. I was tired of being in pain and tired of having no appetite. More than anything though, I was ready for a shower. The nurse disconnected my IVs and covered both forearms in plastic, taping them shut so no water could get into the IVs. That shower was the highlight of my hospital stay.
After the shower the rest of the morning was spent relaxing with family before surgery, which was scheduled for 1:00pm. A doctor had come by earlier to initial the side of my abdomen where the affected ovary was located, and I was in good spirits.
I played Safe and Sound one last time before surgery. Another song played and we kept talking. The third song was Coldplay, Warning Sign. My son suddenly stood up and said, “Okay, I think I’ve had enough of the music.” I thought he just didn’t like Coldplay, but quickly realized he was crying. I looked over at Michael and his eyes were becoming red and he had a panicked look on his face. I diffused the situation as quickly as possible.
I texted my sister, who was in charge of offering comic relief while I was in surgery. My text said: Please hurry up and get here! The men are falling apart!!!
Eventually, my husband, my kids, my sister, and my friend Liz were all hustled upstairs to the pre-op room. Two anesthesiologists came in, then a third, to discuss the risks of anesthesiology and the decision not to have an epidural port put in because of the blood thinner, Lovenox, I was taking for the blood clots. I hadn’t been thrilled about the idea of having an epidural anyway, so I was relieved the option was off the table. Someone talked to me about donating part of my tumor for research, which I agreed to do if it could help someone else in the future, and I signed papers for that.
I told every doctor who came into the room not to give me any more IV’s unless I was asleep. I was pretty adamant about it. After having to have another IV put in for the CT scan, I was down on IV’s. I was tired of being hurt. I wanted to be sedated.
It was like a party in the room. I had somehow morphed into a stand-up comedienne during my entire hospital stay, and I had no idea why. Maybe it was the pain meds, maybe it was nerves, or maybe just my way of coping, but my entire family and I were constantly cutting up and laughing. We were still going strong in the pre-op room, and I had to make everyone promise not to get us kicked out of the hospital while I was in surgery. I needed a room to come back to!
Dr K stopped by to initial my abdomen again (the previous doctor’s initials had come off in the shower) and to check in with me. When she left, I saw she had forgotten her marker on the table beside me. Oooohhh, very dangerous move on her part. The wheels started spinning and I asked the family what they thought about writing a little message or picture on my stomach for serious Dr L. Of course they jumped all over the idea and I quickly had to rein them back in from wanting to turn my abdomen into a graffiti filled billboard. I had my daughter draw a small smiley face and write “Hi Dr L!” underneath it.
I had visions of him being so shocked he passed out in the operating room, so when he checked on me just before surgery I fessed up and told him what we’d done. He was genuinely delighted and amazed that we thought he needed to “lighten up.” I finally asked him what kind of music he likes to listen to and he said we “might be surprised.” Thinking he was going to say he liked country music (no way), he admitted he likes to listen to 70’s classic pop, like Neil Diamond. Not quite the Yo Yo Ma that I suspected (though he said he had seen him play in concert before), but not so surprising. I would have loved it if he had said he liked to listen to country music.
I apologized to my family for anything I might say after the surgery, before the anesthesia wore off. From the moment I entered the hospital I seemed to have no filter. I knew it could get me in trouble if I was zonked out on anesthesia and pain meds.
My daughter’s flight from Portland was delayed 25 minutes, but as one o’clock came and went, and we learned that Dr K’s three small surgeries had taken longer than expected, we realized Dominique had a real shot at making it to the hospital before I went into surgery. Indeed, we got to spend almost an hour with her before they finally wheeled me out of the room around 4:30pm — three and a half hours after our planned time of 1:00pm.
Saying goodbye to my family and Liz was strange. Everyone looked so worried. I had to keep reassuring them that everything would be okay — and I really meant it. I wasn’t worried at all and knew that I would be fine. I remember someone telling me they were going to give me something to relax me, me saying “good, I need that,” and someone putting a cap on my head and trying to shove my hair underneath it.
The last thing I remember is asking the doctors if they could sedate my husband so he would stop taking so many photographs.
In the next instant, my eyes were closed and Dr L was telling me that everyone saw our little joke on my belly and thought it was hilarious. The clock above my head said it was 10:30pm. How could that be? I was conscious but I could not for the life of me open my eyes. It was too much effort. My entire upper and lower abdomen was one huge white bandage. I had new IV’s on both wrists and arms. I had a hard plastic thing inserted under the skin below my left breast.
I don’t remember how I got back to my room. I do remember Michael leaning into me right after surgery telling me that we will be staying in Dallas for a long time, that I will have to see Dr K every three months for the rest of my life. I reassured him not to worry about that now. I wondered why he thought that was so important. I didn’t care where I lived as long as I was alive.
I was in my room surrounded by my family. I told them just because my eyes were closed didn’t mean I couldn’t hear them. I was alive. I was so out of it.
We stayed up talking and had “Family Therapy.” Dominique said I looked like the Dalai Lama sitting up high on his throne, eyes closed, dispensing clairvoyant information. We talked and talked. I told everyone some changes we needed to make as a family. Some things seemed crystal clear, others completely unimportant.
I knew the anesthesia was going to make me act weird. If there were any vestiges of my verbal filter left before the surgery it had been nuked out of existence once and for all by the time I got back to my room. Nothing seemed more important to me at that moment that getting my life in order and setting some things straight.
It was hard to talk. My mouth felt like it was one big cotton ball. Michael and the kids had to keep swabbing my mouth and gums with these little sponges on sticks that the nurse gave us. This cottony dryness lasted for days after the surgery and was very unpleasant.
We talked. We laughed. We cried. My family is so patient with me. I am bossy and selfish and they waited it out with me.
Finally, at 3:30am, I couldn’t stay awake any longer. My sister and the kids drove home and Michael slept on a cot in the room. Apparently I moaned a lot in my sleep. I remember having nightmares in my sleep, dreams of lions eviscerating another animal as I watched.
And for the record, the alien monster baby was officially 13.8 cm long and weighed half a pound. We might have photos of the little beauty, twisted and ruptured in all his glory–but I’m pretty sure you won’t want to see them.
To be continued . . .
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 . . .