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 . . .