When I was a kid growing up, I remember watching TV and, from time to time, on a show someone would be rushed to the ER and their husband or parent would spend the night in the hospital room with them. They would always seem so heroic, having to spend the night in some uncomfortable chair and in the morning everything always turned out alright. As a kid, I wondered when that would happen to me. When would I spend the night in the hospital at a loved one's side? When would I get the chance to be the hero, so everything would be all better the next day? Well last night I got that chance. Only not everything is alright and I certainly don't feel like a hero.
I haven't written about my mom in over a year. Since that time I've taken two vacations with her. The first was to Kauai in March. That was the trip of a life-time and I'm so glad I took it with my mom and dad, and with Kate. The second trip was to Pentwater, MI in June.
Growing up, my family took a vacation to Pentwater every summer in our crank-up pop-up camper. I loved camping with my family when I was kid. It was my favorite week of the year--every year. The last year we went was the summer before I started high school. That is, until the summer of 2006, when the whole family returned, only this time we added my brother-in-law Chris, sister-in-law Jenny, and my four nieces. And we stayed in a cottage instead of a pop-up camper. We went back again this June as well. Both trips to Pentwater were greatly enjoyed by everyone in my family.
Since the last time I wrote, my mom has also had twenty-six chemotherapy treatments--every other Friday for a year. During all this time she has continued to work, sing at mass, and participate in many of her volunteer activities. And even though she had each chemo treatment at Northwestern Memorial Hospital, just a few minutes away from my office, I never once visited her while she received them. Every time I was just "too busy" and said I would go next time. The first weekend of November, my family got together at Elmhurst Public House. My dad told me Mom would really like to see me there... but I blew it off. I had just seen everyone the weekend before to celebrate my dad's, grandpa's, and niece Caitlin's birthdays all at once, so I thought that was good enough. I decided it was more important that I go through the process of upgrading my hacked/unlocked iPhone to the 1.1.1 firmware. And I promised myself I was going to finally visit my mom when she had her chemo the following Friday. But of course history always repeats. That Friday, Google hosted Lunch 2.0 and I choose that over visiting my mother again. I told myself I would really really really go to the next one. Well that Friday may very well have been my last chance.
On Friday, November 16th my mom had a very bad pain in her back and my dad drove her to NWM ER that night. Kate and I met my parents at the ER when they arrived. Turns out the pain was caused by blood clots in her lungs. She was very lucky that it did not cause a pulmonary embolism. The doctors admitted her and started her on a prescription of Lovenox. She was released on Monday, the 19th.
My family had a great Thanksgiving. Combined with Kate's family get together before that, I ate so much food I'm lucky I didn't burst. Everyone was happy and thankful to be together.
Monday, November 26, kicked off a series of doctors appointments for my mother. That monday started for my parents at 4:15 am when they woke up to get ready to travel from the west suburbs to downtown. After a CT scan and other tests and meetings with doctors, they were back home after 4:30 pm. It was a very long day and she was very tired. While the CT scan showed no change in the liver tumors, the oncologist thought her chemo regimen had about run its course and we should make a change in treatment. My mom had developed a large amount of fluid in her belly, which the doctor was concerned with. On Thursday, November 29, she had the fluid drained from her stomach. Two and a half liters of fluid were drained before my parents headed back home. It was a very difficult day. On Monday, December 3, a stent was put in the main blood vessel of her liver, which was greatly constricted by the tumor. Again, a very difficult day. By the time my parents got home, she was totally exhausted. The doctor told us that she would have a couple of days of discomfort, but by Thursday she should begin to feel better.
It didn't turn out that way though. She felt worse and worse as the week progressed. She was in such pain that my dad called her oncologist at 3:30 am (waking her out of bed) on Friday morning. She told my dad to take her to the ER now. Mom refused to go, telling my dad she would be okay. As Friday progressed my dad decided that she was going to go whether she wanted to or not. Reinforcements came in the form of my sister Debbie and her husband Chris. They convinced Mom that she needed to go to the ER. So back we went to NWM's ER on Friday night. I once again had Kate in-tow for another hot date sitting in the waiting room. In the ER, Mom had more xrays and another CT scan. We even recognized some of the nurses from the 3 weeks ago stay which is not a good sign that you remember those people. She was admitted into the Prentice wing at about 4 am Saturday morning.
What I've left out from above is that my mom has barely eaten much of anything since her trip to the hospital three weeks ago for the blood clots. We understood that she might not have much of an appetite, especially with all the fluid build up pressing on her stomach. But my mom never told any of us that it was physically painful for her to eat. We didn't find that out until she told the doctors when we got to her room in Prentice that night. Not wanting to be a burden or to make us worry, she never told us how bad it was.
My mom's blood clots are the likely chain reaction that started all her recent troubles. The blood clots stopped blood flow to a section of her lungs and destroyed the tissue there. The dead tissue is now infected and has caused pneumonia. This is likely the main source of her worst pain, but it doesn't stop there. She also has two hernias. One is about the size of a softball and the other the size of a golf ball. She is far too weak for surgery to fix the hernias.
Last night, my dad, Debbie, Kevin, and I had a long appointment with the oncologist, Dr. Mary Mulcahy, in Mom's room so she could listen. This was an absolutely amazing visit with her doctor and she showed us things none of us had seen before about my mom's case. She was able to pull up all of my mom's CT scans. Dr. Mulcahy stepped us through the last two years of CT scans showing us the progression of the tumors in my mom's liver. She showed us charts of my mom's test readings over time and showed us how one particular reading has jumped up considerably over the past few weeks. That combined with my mom's symptoms are a sign of liver failure caused by bile not being allowed to drain from her liver. The readings should be accompanied by dilated bile ducts in her CT scans though, and that is not the case. Dr. Mulcahy is going to consult a liver specialist because at the moment she is stumped.
This leads me to last night. I just couldn't leave my mom alone last night. She is so out of it from the pain medications that there is no way she would be able to hit the nurse call button if she woke up in the middle of the night and needed something. So I finally got to spend the night at a hospital. It was the worst night of my life. After my brother left at 11:30 pm, I laid down on the couch to try and get some sleep. Unfortunately, every five to ten minutes my mother would moan that she was in pain. "Oh it hurts," or "would you help me, please?" were the phrases I heard repeatedly. When I would ask her what she needed me to do, she would only answer "I don't know, just help me please." I've never felt so useless. I definitely did not feel like the heros I saw on TV.
At 3 am, the nurses came in to give her more pain meds and check her vitals. They also shifted her into a new position in the bed. When they left, I laid down again. A moment later my mom was moaning and asking for more help. She was all hunched over on the side of the bed so I straightened her up and stuck a pillow between her and the railing. I asked if that was better but only got an "I don't know" response. I turned my back to grab another pillow and before I turned around again, I heard my mom's unmistakable snore. I immediately knew things were better. I left the pillow where I grabbed it and laid back down on the couch. It was 3:10am. I fell asleep to the soothing sounds of my mom's snores and didn't wake up until 5am when the nurses came in to check on things and give her more pain medication. Back to sleep I went and things went just as well as the two hours before.
At 7:30, I woke to my mom moaning that she hurt. I called the nurse. At 8 am she finally got her pain meds, a full three hours since her last. God love small victories. The rest of the morning has been fairly peaceful. I woke her up to feed her two pieces of a hard-boiled egg (which she hated) and half of a cup of orange juice. She hasn't complained of much pain but she has been extremely out of it and sleeping virtually the entire time. I hate to see her like this. I don't know what is better, hearing her complain about the pain, or seeing her so sedated that I can't have any kind of a conversation with her.
There is plenty more to this story but it's late Tuesday night and I need to get some rest. At the moment I don't know what else to say other than these two words: cancer sucks.