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 . . .
The day after I wrote my previous post on death, I found myself in the ER. Coincidence? Karma? Jinx? More like bad luck and the reappearance of something that no one could explain six years ago. At least now: mystery solved.
Six years ago I landed in the ER, then spent five days in the hospital. Imagine the head of surgery coming to you and saying: The good news is: it isn’t cancer. The bad news is: we really don’t like to operate there, we have no idea what it is, and we have to admit you immediately.
I hadn’t been scared until he mentioned the c-word, and realized I probably should have been. Things could’ve been much worse. In the end, after five days in the hospital hooked up to an IV with no food or water, and after numerous tests, all they could say was they didn’t really know what it had been and hopefully it would never happen again.
It was just one of those freaky things that sometimes happen to people.
Fast forward six years to last week when a slight stomachache turned into pain and fever again, in exactly the same location. This cannot be happening again, can it? It must be something different! Of course I did what I always do when I need answers: I went straight to the internet. After ten minutes of peering intently at diagrams of the human abdomen, I knew I needed to call the doctor. Since I knew it couldn’t possibly be the same thing as before, this time I feared cancer–or imminent death.
I called my doctor.
I loaded up the Kindle and iPad and headed to his office. I knew this wasn’t going to be fun and would probably take all day, if not longer. If it was anything like last time there would be needles involved, and plastic-tasting liquids ingested, and hours and hours of waiting. And worrying.
I’ve had the same doctor for over 20 years. He knows everything about me. He said it was too coincidental that it was in the same location, and even if it wasn’t related the fever and pain pointed to something potentially serious. He wanted me to have a CT scan right then, and called ahead to the same ER I went to six years ago.
The ER? Seriously? Now the dollar signs appeared above my head. How much is this going to cost me? What is my ER deductible?
Even worse, how long will this keep me from running? I was training for a marathon, dammit! I hadn’t missed a day on the training plan yet, and my running was going really well!
I drove myself to the ER, all alone and feeling pitifully sorry for myself. I texted Michael and told him not to come meet me until he got off work and fed the dogs first, that I already knew the drill and there was nothing he could do to help. I had my iPad and Kindle to keep me company.
The ER waiting room looked like a Greyhound bus station. There was the ubiquitous TV playing a rerun of House or some version of CSI, and almost every chair was taken. There were entire families camped out, people hunched over asleep, people in wheelchairs and face masks, and lots of empty snack bags and Coke cans on the floor. There was a mix of ages, but the majority of people were old. And very poor. Strangest of all, people were talking. There were conversations going on about the most mundane things, laughter, jokes being told. Watching the people around me did not keep my mind off my worries. What stories do these people have to tell? What are their lives like when they’re not sitting in the ER?
I waited. I had a sudden, overpowering urge to casually walk out to my car and drive home. I wanted to curl up in my bed and draw the covers over my head. I wanted to be anywhere but there.
Six years ago the ER waiting room was empty and I was hustled back to a “room” almost immediately. This time I sat for almost an hour on a cold, uncomfortable plastic chair before I was called back, and I barely managed to get a curtained off spot in the hallway just big enough for a bed because they were so busy. My blood pressure was taken for the fourth time that day, I was given a gown, and I met the doctor on call who, after some gentle nudging on the area of pain, told me a CT scan was indeed in order.
I was hoping he wouldn’t say that. A CT scan meant an IV, and I hate IV’s. But once that was taken care of (and it really wasn’t too bad this time), I relaxed. I realized things were out of my control and I would deal with whatever the CT scan showed. If it was cancer, I would deal with it. If it was the mystery thing from six years ago, I would deal with it, too. I had lots of time to think about all this while I drank the Slurpy-sized container of plastic-tasting contrast liquid, then the two hour wait while it made its way through my body. Michael showed up just before I was rolled away for the CT scan. He immediately took command of the iPad and made himself comfortable on the floor.
The ER isn’t always like you see on TV. There was no screaming, no blood, no doctors running down the hallway screaming, “Stat!.” It was fairly quiet, even though nothing separates you from the other patients but sheets. Since I was in the hallway I saw everyone who walked or rolled past. All of the doctors and nurses seemed so young, but most of the patients were very old. I had the feeling most had been there before and used the ER as their primary care physician. I heard the doctor explaining to the woman next to me (who had a CT scan for what turned out to be a urinary tract infection) how he could only give her a prescription for pain medication for two days, otherwise “we’d have every person in the city coming here for pain pills” (which is something I’d never thought about before). He advised her to see her regular doctor if she needed more.
It’s the not knowing that is truly the worst. And the waiting.
We waited a long time to hear the results. We played Yahtzee. We talked. We listened to other conversations around us and I smiled encouragingly at other people being wheeled down the hall for tests. Everyone looked scared and uncertain, just like me.
Finally, a new young doctor appeared. After comparing the CT scan from the one taken six years ago, and ascertaining the problem was indeed in exactly the same location as before, the doctors could now determine what was going on. This time I was given a prescription for two types of antibiotics and a painkiller and instructions to eat only broth for a few days, then slowly reintroduce solid food. I could run again when it felt comfortable to do so. Now I knew what “it” was, that it’s something the doctors rarely see and is the reason why it wasn’t diagnosed six years ago, and that it can be treated. It wasn’t cancer and was nothing that required surgery or a hospital stay. A day’s worth of anxiety slowly seeped out of me, and suddenly I was exhausted.
Before I left, a nurse took my blood pressure yet again. Then she took it again. And again. Finally, she asked me, “Are you just a healthy person?” I told her I ran a lot and she was satisfied. It seemed strange to be asked that question in the ER, but was also a good note to go home on.
I feel very fortunate that it wasn’t something worse than what it could’ve been. Eating broth for a few days is no fun, but it’s a small price to pay. There are so many others who go to the ER with much worse ailments than mine, and sometimes the news is life changing (or ending). My day in the ER gave me a lot of time to think, about my health and my life in general, and I can’t help but know how lucky I am. I say it all the time, but things really can change in the blink of an eye. Simply put, don’t take your health, or your life, for granted.