by Jeni Birr
We spent many hours discussing the possible side effects. Frankly, he was very surprised I didn’t already show any signs. I had never had any trouble finding the right words, or any tingling feelings, or weakness on one side of the body or anything. The only symptom I’d noticed were the minor “episodes” I’d had several times over the last few years, which were determined to likely have been mini seizures, but I’d convinced myself it was all in my mind because my dad had just died of a brain tumor. It amazed me that no one seemed to think that was relevant. They all said things like “it’s not genetic,” and “it really is just a case of lightening striking twice,” which I still have a hard time believing.
He explained that with the type of surgery he would be performing, in the area where the tumor was, I would not be able to speak for up to a month afterwards; that it would all come back eventually, but it may be a few days, or it could be a few weeks. It may come back gradually, or it might come back overnight. I would still be able to take care of myself and wipe my own ass, but we should probably have a system in place for communicating if I was tired or hungry, or wanted something because I would still need a lot of help. I made a very extensive set of note cards. The top one said “I love you!”
He also explained there were several blood vessels running through the area, and if he did happen to nick one, there was a possibility I would have a stroke and most likely lose the use of my legs, which would be permanent. There was also of course, with all major surgeries, particularly those in the brain, the possibility that I might not wake up at all. I didn’t need time to think about it though, I’d already made up my mind to have it done. We scheduled it for about two weeks out, April 24th.
We spent the next couple weeks training Eric how to take care of the bills and the banking and what the usernames and passwords to everything were, because this had all previously been my job. I made him extensive cheat sheets because I was very particular about how I liked to keep our bills and spending money organized, and how I paid each thing and why. He listened and adhered to most of it, and then came up with his own system which was different from my own, but I figured I needed to learn to let go of this and let him do it his way, which worked out just fine. It probably seems like I’m setting up to say he ruined our finances, but he didn’t. It was a real “learning experience” for me. I also called everyone in my family to inform them they would probably not here from me personally for a while after the surgery, but Eric would keep my Aunt Jan informed and she would relay the messages if there was any news. I also started a blog at JenisProgress.blogspot.com (shameless plug) to let everyone know what was going on, and that I would be updating when there was news, and Eric would update it with the successful surgery results as I would not be able to.
We had to drive out to the university hospital a few times before the surgery for different blood work and what they call a “Live Mapping MRI,” where the patient is actually involved in the MRI and they can determine what areas of the brain are used for what thought processes. I’m pretty good at lying perfectly still when I need to, but it was even more important for this one because I had to pay attention to images in front of my eyes and think certain things at certain times, and make my mind go blank at other times. Have you ever tried to make your mind go completely blank?! Impossible. It is for me anyway. The tech suggested to just think of a white table cloth, but I work in a restaurant, the image I got was a fine dining table with candles and flatware. I just tried to think of a white square. Then they would show me pictures of objects and I was supposed to say the word in my mind, but not mouth the word; and we had to repeat that part about three times, even though I am certain I was not mouthing the words. This went on for about two hours. I was getting kind of annoyed, which is hard to do to me, but eventually, we were done.
We decided to spend the night before the surgery in a hotel right around the corner from the hospital as it was about an hour from our house and we were supposed to be there by 7:30am. We got dinner at the Applebee’s or Chili’s or whatever it was across the parking lot. This was not the greatest idea because apparently Tuesday was kids’ night and it was packed with families with small children. I know, I’m an ass and families with small children probably hate me and my people who don’t like the sound of other people’s children crying or shouting or whining, but I already work in a restaurant where I have to put up with it over fifty hours a week. I wanted what could potentially have been my last meal to have a little bit of peace, but no, this was not the place for it, and I had to stop eating by 8pm, so Applebee’s or Chili’s or whatever it was, is where it was going to have to be.
We woke up the next morning and went straight to the hospital and checked in. In less than an hour I was taken to where I could change into my gown and put all my personal items in a bag to give to my husband when I was taken in for surgery about an hour later. He was allowed to sit with me while we waited for the surgeon to come by and go over everything with me again, and the nurse to put the IV into my arm. The whole time we were talking and laughing and taking goofy pictures of me in my gown and cap. I’m sure I should have been nervous, but I’d had a really good feeling about this surgery. I’m not normally someone that “gets feelings” about things, but I just had a feeling, with no better way to describe it, that this was going to go well, so I wasn’t nervous. I’m sure Eric was, but he hid it well. Eventually they came to put the anesthesia in my IV and obviously, I don’t remember anything after that.
I am told the surgery took about six hours, which is what we expected. They gave Eric a pager and told them they would page him with updates. His father and my uncle came up to the hospital shortly after they took me in. I guess the surgeon spoke to him when I was out and told him everything seemed to go just fine, but I wasn’t conscious yet so they didn’t know for certain the extent of my ability to communicate. I do remember waking up though. The surgeon’s assistant asked me “what is four times nine” and I said “thirty six.” Aside from having the worst headache of my entire life, I was perfectly fine, able bodied, and even able to speak; which wasn’t even supposed to be an option. I found out later that when the assistant texted the surgeon that I was “doing math,” he thought she was kidding. He asked her how I was really doing and she told him she was serious.
I spent the rest of the day in the ICU and don’t remember much of that because they were giving me morphine. If you’re curious what type of surgery I had just google “Bifrontal Craniotomy.” I warn you though, it’s pretty intense. I had staples all the way across the top of my head when they removed the bandages, and to this day I can still tell where the metal plate is and where the bolts are holding it in place.
The surgeon came to visit me that afternoon and seemed very pleased with the surgery. He let us know that there was only one tumor, but it was about the size of an avocado, and he had removed about ninety five percent of it, but felt that the other five percent would be too risky, and that radiation would hopefully take care of that. I was pretty out of it for much of the next few days, which was amplified by the fact that I couldn’t focus on anything because my face was so swollen I couldn’t put my contacts in and my head was still too damaged to put my glasses on, and I am very blind without my vision aides. Eric watched the NFL draft next to me, and I mostly slept.
The first night was pretty bad. I’d had a urinary catheter in the whole day so I didn’t need to get up to go to the bathroom, but apparently there is metal in it so it had to be removed for the follow up MRI I had to get at about midnight. As soon as I got back to the room I begged my night nurse to put it back because otherwise I was going to have to call her in at least every hour because I have an incredibly small bladder. She asked a doctor and they said no, but she was very nice about bringing me the bedpan probably every twenty minutes for the next hour. After the third time she checked my bladder and I was indeed retaining urine so she was able to do a temporary catheter or something to release most of the urine so that I was abl
e to sleep, but my head hurt too badly to sleep much.
The next day I was moved out of the ICU to a room on the neurology floor, but with a roommate. There were curtains up between the sections of course, but she was always on the phone, or had her family visiting, or was snoring while she slept. I feel like we probably would have stayed another day, but after twenty four hours sharing a room with this woman, I decided I could be just as miserable at home on my couch as I could in the hospital, and I requested to be discharged, which took several hours. I’ll never understand why there is always an intense hold up when a patient is ready to go home. It took even longer with my dad.
Eventually, the nurses had the prescriptions ready which fortunately included a gradual tapering off of the bloody steroid and had explained what I needed to take when to Eric, and we were sent down to the hospital pharmacy, which had one person working and a line of at least six people waiting. He parked me in my wheelchair off to the side and stood in line for a few minutes, but could see that I was still in a lot of pain and really wanted to get home, so we left.
We stopped at our local CVS pharmacy where I already filled all my other prescriptions and they had everything except for one thing that we had to go to another CVS for a few miles away. I just remember it was very bright that day and I couldn’t put my sunglasses on so I just tried to keep the visor down and my eyes closed, but it still hurt pretty badly. Eventually, we had all the medication in the county and headed home. I’m pretty sure I went straight to bed, after wolfing down the McDonalds we had also stopped for.
Over the next few days I had good moments and bad. I really scared Eric one night because he was asking me questions and I would just look at him and kind of smile, but not answer the question, but this was only the second night after we got home, and it was very late, and honestly, looking back now, I think I was just really high. I had never really smoked before because I am a complete lightweight and it would just put me to sleep, but I’ve been told Marijuana is of great help to cancer patients, and it’s medically legal in Michigan, if you have a card, which I do now, so every now and then when I’m nauseous or have a bad headache, I’ll smoke, and it sure does help.
Eric, bless his soul, followed me around the house the first few days until he felt he should give me some space. On probably the fourth day home he was allowing me some private time in the bathroom when I started feeling lightheaded in the shower. I finished rinsing and turned around and shut the water off, and then I fell. I don’t remember the fall, but I think my knees just buckled out from under me because I didn’t topple over, I just went straight down and landed on my butt and snapped back to consciousness as Eric came bursting through the door asking “what happened” with that same pained but tender look on his face. I simply said “I fell.”
I got out of the shower and wrapped up in a towel and sat on the toilet a few minutes until I felt better. After asking me at least twelve times if I was certain I hadn’t hit my head, he decided we would not be running errands that day. He had our friend, Corrie, bring us some groceries because he didn’t want to leave me alone and I was in no shape to be leaving the house. Fortunately, we had a bunch of friends offering to help us with whatever we needed. Corrie would not be the last.
CHAPTER 16
A week or so later we drove back out to Dr. Sagher’s office to have the staples and sutures removed, and discuss further treatment and the pathology report. Turned out, it was really a stage 4 Glioblastoma Multiforme, exact same one my dad had given into just two years prior. Dr. Sagher said it was very unlikely they had anything to do with each other, but he would be willing to bet my tumor was already present and growing when he discovered he had his. Looking back, of course I wish I’d gotten checked out when I had those little episodes, but I had asked my dad’s surgeon if my brother and I should get checked out and he said no, it’s not hereditary, and my insurance at the time wouldn’t have covered the CT scan, so I didn’t. Like I said, I figured it was all in my head, for lack of another way to describe it. No pun intended, really.
Too Early*2013
She was born six weeks early
Weighing 5 pounds and 5 ounces only
The doctors with only her interests in mind
Said she can’t go home yet, she must stay the night
Too early, too early
Too young and too fragile
Too early to go home
When she was just a child of 8
Her parents decided to separate
She chose to go live with her mother
Within months only, she wanted to go home
But selfish mother said no
Too early, too early
Too young and too fragile
Too early to go home
When she was only 29
And workin that unpaid overtime
The doctors found a mass in her brain
She had it removed and did all she could do
But it took her anyway
Too early, too early
Too young and to fragile
Too early to go home
Too early, too early
Too young and too fragile
Too early to go home
~*~
After we were done with Sagher, he sent us to the other side of the hospital to meet Dr. Larry Junck, who would become my new Neuro-oncologist. He seemed like a very smart man, but had the personality of a potato. He explained that we would start radiation in several weeks, at which point I would also begin chemotherapy which would be taken in pill form an hour before the radiation. He explained that some people react poorly to chemotherapy and it tends to attack the white blood cells as hard as the tumor, so I would need to get my blood checked weekly because white blood cells make up the immune system. He also insisted I get a pneumonia vaccine before starting radiation and chemo. I feel like there was more because we were there for hours, but I think this is the bulk of it.
I know that when my second father, Don Milton, had cancer of the throat he drove out to Ann Arbor every day for his chemotherapy, but we really weren’t trying to do that. We asked if there were any closer facilities and turned out the hospital about five miles from our house had a U of M Cancer Facility, so we scheduled an enrollment appointment there for about a week later.
This is where I met Dr. Abu-Isa, who became my Radiation Oncologist, and was much more pleasant to work with. He was younger and actually had a sense of humor. I filled out some more paperwork and scheduled my first day of radiation to be May 28th, the day after Memorial Day.
That weekend we went up north to Eric’s dad’s cabin on Hubbard Lake where we had been to several times before. I didn’t normally love going up there for more than a few days because for whatever reason; I felt like life was going on without me. I don’t relax well. I can’t just sit still and do nothing. It makes me anxious, and there wasn’t really much to do up there except sit around and drink, which is great for most people, but just not me. This time, however, I had no problem with it. The surgery had made me very passive and I was still not back to the normal me. I had no qualms sitting around doing nothing at this point, even though I couldn’t drink because it would likely react poorly with my meds.
The day we left was the day before my birthday. We took the long way home which was very scenic. We stopped at the Tawas State Park which had a lighthouse and beaches and a gift shop, and Eric brought his fancy camera he had bought after graduating that took really high quality video and photographs and he took a whole lot of photos. There was also a dog friendly beach that we took Apollo to, but he hates water. He will not jump in the water unless he’s chasing a favorite toy we’ve tossed in and as soon as he hits it he freezes, so he didn’t want to go down by the water. We also stopped at a few little parks and piers on Lake Huron for more photos. It was quite lovely.
The next day Eric surprised me for my birthday. He said wear comfortable shoes and then blindfolded me and drove all over hell and gone trying to confuse me, b
ut we really ended up at the zoo that was only a mile or two from our house. I love animals and had been asking to go to the zoo, but he never wanted to go because if he wasn’t working, it was a weekend, and it was likely to be packed. But he wasn’t working at this moment because I hadn’t been given the okay to be left alone yet, and my 30th birthday happened to fall on a Monday. We walked all over, even though it was ridiculously hot for May 20th in Michigan. In typical Eric fashion, he took lots of incredible photos.
Later we went to Red Lobster for dinner, which is my favorite restaurant that we never go to because he’s deathly allergic to seafood, but they have other things and made appropriate accommodations, as any restaurant should. I know it doesn’t sound like much, but with Eric not working we were running out of savings quickly; so it was perfect for me. His birthday was five days later and our friends, Jeff and Aimee, who had just gotten married several days after my surgery, took us out to dinner at Eric’s favorite local sports bar: 24 Seconds, in Berkley.
On Memorial Day we got together with my Grandmother and my Uncle at a restaurant on Woodward, where we had always met as a family, but no one knew why because no one really liked it all that much. My dad had always liked the giant goblets of beer they had. I think this is why I liked going, because it reminded me of my dad. My grandma and I talked about who knows what while Eric and my Uncle talked about cars and guy stuff. This was a typical gathering.
