The day before my very first chemo treatment I decided to spend my last day as a normal person, doing some of the everyday things that I love the most. My objective: to have fun and not worry about the next eighteen weeks of chemo.
First things first: I slept in late. It was heaven. I lounged around until 10:00AM or so, read a book, checked my email, blog posts, and Facebook, then finally decided to get up and take a shower. There was no hurry.
Next on the agenda: really bad-for-you, high calorie fast food from Cane’s (chicken tenders, fries, Dr Pepper, and extra Cane’s sauce). I know. It’s my guilty not-so-secret.
It wouldn’t be a day as a normal person unless I went to Target. I love Target. My motto has always been: If you can’t get it at Target, then you really don’t need it. And no, Target is not sponsoring this post. (Neither is Cane’s.) I bought a bunch of things I would consider “cancer snacks,” which was really nothing more than stuff that sounded good at the time: gummy fruit snacks, chocolate pudding, nutty protein bars, and a big bag of pistachio nuts. I had no idea if I would really want to eat any of this stuff if I felt nauseous from the chemo, but we would certainly find out.
After Target, my son’s girlfriend made a chocolate cake with vanilla frosting, my favorite. We had both been craving something sugary all week, so she was kind enough to make it. I had a huge piece and loved every single bite before dinner.
I spent a little time watching TV, relaxing, and gathering my thoughts about the next day. I was nervous, but not unnecessarily so. I wasn’t afraid, but felt uncertain about what it would really be like, and if it would be as bad as everyone said it would be.
I met a group of running friends for dinner at a small, local restaurant. We had been trying for several weeks to have a Ladies Night Out, but somehow Bill and Anil crashed the party and became honorary girls for the night. It was such a great evening, filled with talk of running, being sick, our lives, a little gossip, and exclamations over how good the food was. I had a tasty dinner salad with an excellent risotto with shrimp.
To end the night, all but two of us piled into our cars and went to see the movie Before Midnight. I loved the first two films, Before Sunrise and Before Sunset, and had been looking forward to the next installment for years. Literally, years. Maybe it was because being a normal person was exhausting, or because my mind was on the next day’s first chemo session, but I was disappointed. Maybe it was the build-up. Maybe I’m too much of a hopeless romantic. I still liked the movie, and should probably see it again in a different frame of mind and when I’m less worn out, but I found the talk exhausting. Maybe the pushing forty Jesse and Celine were both just a little too real this time for me.
I’m tired of real. I have enough real on my plate right now to last me a lifetime.
To top off my last day as a normal person, my daughter arrived from Portland to be here for me during my first two chemo sessions. In case I haven’t mentioned it before, I have the best daughter and son in the world. Having them both here to help me through this, along with my husband and my son’s girlfriend, not to mention my awesome friends, has been the biggest blessing of my life so far.
It was a perfect day.
Bring on the chemo!
I stumbled upon a great blog I love, My Swollen Stomach, when I was first diagnosed with ovarian cancer two months ago. Her story is slowly unfolding into something similar, yet very different, from my own. The writer was 22 years old when her journey began.
Please take a moment to read her blog. Start at the beginning. All I can say is, if someone had told me I had to wait six months for surgery to remove my “cyst,” like this young woman was first told, and sent home in the kind of excruciating pain I was experiencing, cancer probably would have killed me.
Sadly, this is what happens all too often to women who are not lucky enough to experience any symptoms or pain that may alert them earlier to the fact that they could have ovarian cancer.
There is no diagnostic screening for ovarian cancer.
Most women are diagnosed with ovarian cancer when it is already in the advanced stages. The overall five year survival rate for ovarian cancer is only 43.7%.
This year alone, 22,240 American women will be diagnosed with ovarian cancer. 14,030 women will die from this silent, deadly killer.
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 . . .
6/5/13 Wednesday: A CHANGE OF PLANS
I woke up around 5:00AM and checked my email. I felt an instant wave of love and caring when I read all the messages from my friends and family. I am truly blessed to know so many good, kind, caring people.
Strangely, at that moment, going through this experience felt like an incredible gift I’d been given. It was an affirmation that people are good, life is good, and not to mess it up by being mean or cynical or hurtful. We’re all here to help one another. Anything less is unacceptable. Don’t waste time worrying about stupid stuff. And everyone has their own stupid stuff, so don’t worry about someone else’s stupid stuff either.
The doctor’s office called in the late morning to give me a few more instructions, to tell me my potassium was low and I needed to eat bananas, and that I was dehydrated and needed to drink Gatorade. I had been drinking water like a fiend and felt constantly thirsty, especially since the weekend, so the Gatorade was a nice change. Bananas, not so much. Nicole always eats bananas, so luckily there was one perfectly ripe one for me to eat before she got up. I felt bad about eating her breakfast, though.
At 11:30 Dr K personally called to tell me there was a change of plans. Based on yesterday’s lab work, my tumor marker test seemed to indicate higher numbers than last week. More worrisome was an elevated CEA (something to do with the colon). She had mentioned the possibility that this could actually be colon cancer that was manifesting in the ovary, so hearing this news was worrisome. Even worse, based on this new information, she wanted me to be admitted to the hospital that afternoon for a colonoscopy first thing the next morning, one day before the scheduled surgery. She had told me last week that she ordinarily would have had me do a colonoscopy before the surgery, but that we didn’t have enough time. She had decided that we needed to make time for one, and the only way to do this was to admit me to the hospital.
I don’t take unexpected changes well, and had a short freak out session about having to check myself into the hospital two days early. I calmed down, started packing, and the kids and I arrived around 2:15, with my sister, who just happened to pull up in front of the house as we were backing out of the driveway.
Checking myself into the hospital was a strange, surreal feeling, almost like checking myself into a health spa–but not really. An orderly came and I was taken by wheelchair to room 377, my home for the next seven and a half days. I settled in while friends sent texts, emails, and phone calls. Doctors came and went, and an IV was set up, with two attempts needed to make it happen (as usual).
There was a new party in the house. Cindy, Nick, and Nicole kept things lively and fun. Liz and Allison came by, and Allison brought gifts: a big sippy cup and a plush, deep red blanket. She has been such a wonderful source of understanding and advice, having just had a double mastectomy herself. She chose her card very carefully because it highlighted the words courage, strength, and hope. She said I would need to remember those words and tell them to myself over and over. I put the card next to my bed on the table.
The kids decided to go out to dinner in the early evening. Taking our nurse’s advice, they went to The Mint in Highland Park, leaving me alone for the first time all day. I was glad for the quietness and the time to myself, but now that there were no distractions, I felt sorry for myself, too. Not much, but a little.
I was in the hospital, with an IV in my arm, and I was having a bowl of red jello for dinner.
The kids eventually returned and Michael was finally able to make it to the hospital after going home from work and feeding the dogs. More doctors and nurses came and went (the shift had changed), and just after 7PM they brought the colonoscopy liquid, GoLYTELY. Someone must have thought they were being really cute when they came up with that snappy brand name.
Holy moly. I had heard it was a lot, but it was 4 LITERS. In a jug! For me to drink 4 liters of anything, even water, would be a big deal. I had already been primed by lots of people, including the doctors, on how disgusting the solution is. I was pleasantly surprised. It really wasn’t that bad. A little salty, a little warm, but not half as bad as I expected. I had expected thick, chalky, and maybe brown. One doctor had even told me it smelled bad, but I didn’t smell a thing. It looked like water. I had the thought that it would probably taste better if it were chilled.
I chugged. I took deep swallows by straw. I wanted to get this over with. When I asked the nurse what time I should have it finished by, she said midnight so I wouldn’t be on the toilet all night. I was shocked. Midnight! I planned on having that sucker finished off long before then, and peacefully sleeping shortly thereafter.
After drinking about five cups, my stomach decided to revolt. I started to gag. I almost threw up when I tried to swallow. I tried every mental trick I could think of. I told myself it was just water. I held my nose, didn’t take a breath, and sighed. And sighed again. Everyone tried cajoling me to drink, as if I were merely a petulant child who was too stubborn to drink any more. My stomach had had enough and was shutting down.
I put out an SOS on facebook and asked my friends for tricks on how to drink a jug full of this disgusting liquid. Several people suggested Crystal Light, but the hospital didn’t have any. The nurse suggested Sprite, but I always associate it with being a kid and my mom making us drink it when we had upset stomachs, which makes me feel instantly nauseous, so I refused the Sprite. Marilyn the nurse, who was so very patient with me, brought some apple juice to mix into the solution, but I still felt like hurling every time I took a drink.
By midnight I had reached my limit. I told Marilyn I couldn’t drink anymore, that it just wasn’t possible, and sent Michael and the kids home. Another nurse came in and told me they might be able to give me an enema or two in the morning to finish the job. All I wanted to do was try to get some sleep in between trips to the bathroom.
Ten minutes after Michael left Marilyn the nurse returned. She apologized and said that she had called Dr K who had told her I had to keep drinking. I wanted to burst into tears. I had sent everyone home and somehow had to do this on my own.
The pity party began. I poured another cup and asked for a Sprite. I turned on the TV and tried to find something to take my mind off what I had to do. It was a very bad night for TV. Warlocks. Zombies. Infomercials. Political news.
I devised a system that enabled me to drink more liquid. I would take one tiny sip of Sprite, the biggest gulp of GoLYTELY I could handle, followed immediately by another sip of Sprite, all without taking a breath. By 3am I had only managed to drink two more cups of the stuff. I turned the TV back on and saw more shows about warlocks and zombies. I found the hospital channel and a short informational show called How To Breastfeed. This will be great, I thought. I loved nursing my children. It will bring back good memories.
Within the first five minutes I was sobbing. Seeing all the babies smiling up adoringly at their mothers as they nursed certainly did bring back good memories. In fact, all I could think of was how I would give anything to go back in time to the first few days in the hospital after giving birth to my son and daughter. I cried remembering the love I felt holding my new babies, and how quickly time passed, and how could I now be in the hospital fighting cancer?
I felt utterly and totally sorry for myself.
By 5am I was exhausted and called it quits again, this time for real. Nurse Marilyn called Dr K again to tell her I was still struggling with the vile GoLYTELY, and she asked if I was at least trying to drink or just plain refusing to drink. I was proud that I wasn’t being so stubborn that anyone would think I was “refusing.” I just couldn’t muster another drink.
I had probably had a total of three more cups since midnight, amounting to just over half of the four liter jug. GoLYTELY had indeed done it’s job, but I had failed. Hopefully it would be enough to have the colonoscopy done later that morning. Nurse Marilyn was kind and patient with me, and remained positive and upbeat until her shift ended at 7am.
After pills, vitals, and blood work at 5am, I finally slept.
6/6/13 Thursday: MY FIRST COLONOSCOPY
I was nervous. Surgery to remove a tumor I could handle. It was the unexpectedness of having to come in early for a colonoscopy that threw me, coupled with the not-knowingness of doing something for the first time.
After getting a few hours of sleep, I woke up and felt very emotional. Michael had gone to work and the kids hadn’t arrived at the hospital yet. I was all alone. I sat in the recliner and looked out the window–which had the worst view in the world, nothing but a flat roof, windows across the way, and not one inch of sky to be seen. I started crying, feeling scared and overwhelmed, but when the nurses came in they thankfully ignored my red eyes and told me someone was coming down soon to get me for the colonoscopy.
I HATE crying in front of others.
At about 10:30am I was wheeled upstairs for the procedure. I was comforted to see there were a lot of other people there, in cubicles and in various stages of anesthesia. My nurse wrapped me in warm blankets, asked me questions, and flashed a pink sapphire ring very similar to my wedding ring. Since I hadn’t been able to wear mine all week, and having never seen one on anyone else, I immediately liked the nurse. I told her I was nervous and she treated me so kindly, telling me everything she was doing, and I soon felt at ease.
Eventually they wheeled me into a large room. There were strange machines I had never seen before. Oxygen was inserted into my nose, and I loved breathing in the clean, cool, fresh air. I had heard it was active sedation, but I remember nothing of what went on. The next thing I remember is trying to open my eyes and someone telling me everything looked great, that my colon was clear and they found nothing, no polyps. What a relief!
I was wheeled back to my room, and for the life of me I could not open my eyes. I was very groggy, and when the orderly stood me up and walked me to my bed I felt a sudden wave of nausea and started heaving. I was so embarrassed, and I HATE throwing up, but someone managed to grab a plastic tub and I kept the room vomit-free. In hindsight, I felt that perhaps they rushed getting me back to my room and standing up again. I’m sure they have their reasons (lots of patients waiting for colonoscopies, probably), but I decided I had to take it upon myself to let others know the next time I’m sedated that I need to be eased back into consciousness slowly. I’m sure being sedated on a completely empty stomach didn’t help either.
The rest of the day was mostly one visitor after another, and there was another CT scan scheduled for later in the afternoon. Since the scan in the ER had been done without contrast, Dr K wanted another one done so she could see the tumor more clearly before surgery.
ANOTHER CT SCAN AND A NEW CONCERN
CT scans are easy and actually kind of fun. I used to think the CT contrast was gross and too much to drink (35 oz), but after the attempted 4 liters of GoLYTELY the night before, I knew it would be a breeze. Also, one of Dr K’s assistants admitted that all I really needed to drink was at least half of the solution and, armed with my new ammo, I made sure to tell the nurse how much I was planning on drinking–and not a drop more! They had also spiked it with Sprite, which helped.
The worst part was they needed to insert another IV. Apparently the one I already had wouldn’t accommodate the larger needle they would use for the CT scan. I was not happy about getting another IV. I made sure everyone knew it, too. (See, I’m not perfect, I can get very grumpy about some things.)
I made sure to flirt with the CT nurse, a big, burly Jersey Shore kind of guy who took my hand and thanked me afterwards for being such a great patient. After the scan (I was surprised that this scanner had an American female voice instead of Methodist Hospital’s British Accent Man) I was taken back to the room and looked forward to a quiet, relaxing evening with the family in preparation for tomorrow afternoon’s surgery. I like to ease into scary situations and get my bearings first.
But, it was not to be. Within an hour or so of the scan, during dinner, Dr Lin came to the room with “unfortunate” news. Two very small blood clots had been discovered in my lungs. He explained about deep vein thrombosis and pulmonary embolisms being deadly, and told us this would have an impact on surgery. Dr K came by shortly thereafter and told us that blot clots changed the game, that they were almost always a marker for malignancy when tumors were involved. I heard the words “cancer” and “malignancy” used several more times, and asked her point blank if she thought it was cancer. She said yes.
It was a sobering moment.
We had two options: either take blood thinners for two weeks and postpone the surgery, or insert a filter into a major artery from my neck which would act as a clot catcher to catch any other clots that might travel up from my legs and into my heart and lungs before and during surgery. The filter would be removed a month or so later. Dr K didn’t want to wait two weeks; she wanted to remove the tumor tomorrow, as scheduled. I agreed. I couldn’t imagine another two weeks of worrying, not eating, and being in pain from the massive tumor (which the new scan now showed as being 13.6 cm).
My nice quiet evening had suddenly morphed into something very scary and unexpected. And dinner was shot.
The filter insertion would take place within the hour. More doctors came to the room to discuss the procedure, consent forms were signed, and Michael and I thanked our lucky stars that we had gotten married in January and switched me over to his much better insurance.
I was whisked to a new room, and this one looked like something straight out of the movie Alien. The machines were huge, it was freezing cold, and it felt like I was in the center of a huge spaceship. There were multiple large TV screens around me. The nurses, Jay and Sean, were hilarious. One told me I had saved him from a really bad movie (After Earth) and the other was buying sod at Home Depot when he was paged. They seemed genuinely thrilled that they had been called back to work. You could tell they LOVED their jobs, which was very comforting. As they were preparing me for active anesthesia (I would be awake the entire time), a beautiful nurse from Africa showed up. When one of the men mentioned something about me being a runner, she leaned over and said quietly in my ear, “I am from Kenya and I am going to beat you in your next race!”
Game on. Oxygen was inserted into my nostrils, only it wasn’t the clean, fresh-smelling kind from the colonoscopy. This oxygen almost burned my nostrils and I made sure I told them about it. They said maybe it was turned on too high and it did seem to help when they turned it down.
One of the men told me the huge machine I was under was actually an x-ray machine. I was asked to turn my head to the left and a large sheet of paper was placed on top of my head. I must have involuntarily flinched because Jay asked if I was claustrophobic, which I affirmed. He made sure there was an opening I could always see out of, and at times I would see a face peering in at me, asking if I was okay.
The procedure itself wasn’t painful, but it was certainly odd. I felt pressure on my neck at times, and was aware that they were guiding a tiny octopus-armed filter down my vein, but I never felt pain. It was more uncomfortable than anything else, and maybe that was because it involved metallic things being inserted into major arteries in my chest. When it was over, I asked how come they hadn’t sedated me like they said they would, and they said I had been sedated. I asked to see the filter on one of the screens, and indeed it looked like a little octopus somewhere inside a vein in my body.
Afterwards, it was back to the room to inspect my new, huge neck bandage and a walk down to the entrance of the hospital. I needed fresh air. As we passed the gift shop, I couldn’t help but notice a large sign on the door: THE GIFT SHOP WILL BE CLOSED ON SATURDAY FOR INVENTORY. I joked with Michael about how I was having surgery on Friday and how would anyone be able to buy me gifts the next day if the gift shop was closed? Unfair! And who does inventory on a Saturday, the busiest visitation day of the week??? As I told Michael, the first of many times, I need to tell someone about that!
I was powerless against cancer, but by God I could at least try to control everything else.
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 . . .
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 . . .