I started this blog for selfish reasons. I need a place to vent and feel sorry for myself. I also thought that my friends would eventually get sick of me posting about my father’s cancer on our regular family blog. So I decided this would be a good way to update my father’s condition for those that are interested and also help my mind process all that is happening.
I am suppose to be working right now. I am home with a sick 4 year old. I gave her some cough medicine and put on the new Chipmunk movie hoping she would drift away for a few hours and let me get some work done. But when I sat down at the computer ready to pull up spreadsheets and budget reports I just stared at it. It seems to be the story of my life these past 4 weeks. Nothing really seems all that important anymore. Work, laundry, eating….. it all seems so trivial and meaningless. The fact is my dad has cancer and is going to die. That is blunt and rough, but it is the unfortunate truth, and the reality of it all is that it completely sucks and it is sucking the life out of me right now. I feel like I am functioning on autopilot.
My dad was diagnosed with stage IV Glioblastoma Multiforme (brain cancer) on March 26th, 2012. He is 67 years old.
At the beginning of March he started having a hard time remembering things. He had to think really hard to answer questions and seemed a little dazed all the time. My mom took him to the doctor and the doctor attributed it to a change in his medication they had made a few weeks before. (Note, the change in medication was just from the name brand to the generic brand of the same meds.) The doctor told her to stop the medication all together and wait for it to work its way out of his system and the symptoms should go away. She waited a week. It got worse. He stopped talking, well not really talking, he would answer questions (after a lot of thought) but would not just up and start a conversation. He would fall asleep whenever he sat down for more than a few minutes. He couldn’t remember something from earlier in the week. So my mom took him back to the doctor again. The doctor said the same thing. It is just a side of effect of the medication change. It will get better give it another week and if he isn’t better then come back next week. It got worse. He couldn’t remember how to make a sandwich or what he ordered at a restaurant 5 minutes earlier. He lost his sense of humor. My mom called the doctor again on Monday March 19th and told them that the doctor had told her to call if it wasn’t getting better. They put her off and told her to come in the next day, the doctor was way too busy that day to fit him in. So on Tuesday she took him in AGAIN and AGAIN the doctor said the same thing.
Side note: My parents live 120 miles away from my brother and I, and 500 miles from my sister, so we were not aware of any of this that was going on. My brother had visited the first week when this started happening but attributed it to what the doctor had told my mom, a change in medication. I talk to my parents at least 2-3 times a week, but my mom was trying to take care of this herself and didn’t want to worry us kids. I had talked to him during these few weeks a couple of times but just thought my dad was distracted with other things when we talked and didn’t think much of it.
I called my dad that Monday the 19th before his doctor’s appointment to ask him a question about my furnace. He told me that he was getting ready to go to the doctor because my mom said he wasn’t feeling well. Odd, I thought. I asked him if he felt sick. He paused for a few second and I asked him if he had a stomach ache or something. He said yes, yes a stomach ache and they needed to change his medication. Weird, I thought. I then asked him about the furnace and his answer (which come to find out later was his new answer for everything) was “I just don’t know what to tell you about that.” Ok then….. my dad usually has an answer for everything. I thought he must be in a hurry to get to the doctor and said goodbye.
It was a busy week for us and I didn’t call my mom back until Friday. We had the typical small talk and I asked her how dad was feeling since they went to the doctor on Tuesday. She finally told me what was really going on. The memory loss, the personality changes, he was starting to have problems with incontinence, he fell asleep all the time, he wouldn’t talk to her unless she initiated the conversation. She told me how the doctor kept putting her off. She didn’t know what to do. I asked her for the name of the supposed medication in question and told her I would call her later in the day since I was at work.
I am addicted to Google. If you don’t know the answer, Google it. So I Googled the medication. The generic and the name brand. Not one side effect of either was memory loss or personality change. Not even in the fine fine print at the bottom. So I called my best friend whose brother is a doctor and told her what was going on. We both agreed it sounded like he might have had a stroke. She called her brother and he said that he needed to go see a specialist immediately.
I called my mom back that evening and told her what information I had gathered and that I thought he needed to go to a specialist. I could tell on the phone that she was at her breaking point. I asked her if I could talk to dad. I don’t even remember what we “talked” about, all I remember is that it wasn’t my father I was talking to. I got off of the phone and sobbed. I knew something was terribly wrong.
I sat in my bathroom (the only room in the house semi-private, away from the 4 year old) and paced back and forth wondering what I should do. I felt like I needed to go down and talk to my parents (idiot) doctor and strongly suggest that my dad needed a CT scan. My mom was just too caught up in the middle of it all and not in a position to be pushy about any of what was going on. So I debated back and forth on whether to call my parents best friends and ask them what they thought. They spend 3-4 days a week with them. I didn’t want to go behind my mom’s back and have her think that I didn’t trust her judgment, but I just felt like something was wrong.
That was the best call I ever made. They reaffirmed everything I thought and agreed I should come down and get my dad into the doctor. They told me 3 weeks’ worth of examples of how something was wrong with my dad. It scared me. They called my mom and told her that I was coming down on Sunday and I was going to get dad into some kind of doctor on Monday. They said she sighed in relief and said “Now something will finally happen.”
My mom was able to make an appointment with another one of the (idiot) family doctors in the practice they go to for that Monday morning. I went down to their house on Sunday and was amazed at how much my dad had changed. It was sad. It made me feel helpless. He knew who I was. He talked if I asked him questions. Otherwise he would sit and just stare into space.
Monday morning we went and saw the (idiot) doctor. He asked my dad why he thought he was there. My dad said “These ladies seem to think I’m sick. I don’t feel sick.” I told the doctor my dad needed a CT scan. Maybe he had a small stoke.
Then the conversation went as follows:
ID (Idiot Dr.) -Well if it was a stroke there is nothing we can do about it now.
Me- He needs a CT scan or to see a neurologist.
ID – Well a neurologist will take weeks to get into. Maybe it is the medication still.
Me – I’m not a Dr.,but I Googled that medication and there isn’t one side effect like what is going on with my dad. He needs a CT scan.
ID – Maybe it is Alzheimer’s.
Me – It’s not Alzheimer’s, that doesn’t come on this quickly. (I’m not a doctor, and didn’t even Google that, and knew it wasn’t Alzheimer’s) He needs a CT scan.
ID – It could be pressure in his brain. We would need to do a spinal tap to find out.
Me – He needs a CT scan and to see a neurologist.
ID – Well we could start with a CT scan.
This whole time he is talking to us he is typing on his laptop.
Obviously not looking at Google though.
So the receptionist was able to get us over to the hospital for a CT scan right then.
I will give a summary of what happened next as this post could easily turn out to be a million words if I don’t.
They did the CT scan.
The radiologist tech came back out and said he needed to do another one with contrast. I asked him if he found something. He said yes.
They did one with contrast. Brought my dad back and said wait.
They never tell you to wait. They always tell you to go and we will call you with the results. Oh boy…..
The tech came back in and told us we could go, the radiologist was reading the results right now (which also never happens) and would call the idiot Doctor and he would call us.
So we went to Costco to walk around and then were planning on going to lunch with my parents best friends. We didn’t think we would hear back for a few hours.
10 minutes in Costco my mom gets a phone call. Idiot Dr.. My mom starts crying and then tries to find a piece of paper to write on.
I take the phone from mom.
ID – I am sorry to have to tell you this but your dad has a brain tumor. You need to take him to the ER right now. They know you are coming. I’m sorry, this never even crossed my mind as a possibility.
Idiot doctor, where did you get your medical degree from? Get Google. Get a life. (If you want to know who the Dr. is just so you make sure you don’t ever possibly come in contact with him email me. I will tell you who he is. I did promise my mom I wouldn’t publicly announce/denounce him as the complete F***up he is.) Excuse the “language” there. I don’t like the guy.
We went to the ER. They got him in and did a MRI.
ER doctor pulled me and my mom aside and showed us the results. It was brain cancer. Mom looked at the picture and turned around and went back into the room with my dad.
The tumor was the size of a plum on his front left lobe. The swelling associated with the tumor had moved the mid line of his brain over 7.5 mm. There actually was no mid line at the top/front of his brain. That pressure was causing all of my dad’s symptoms.
I asked him to write down what type of cancer it was so I could Google it when I got home.
He wrote it down and said “Just realize, everything you read about this cancer is bad. There is no good news with this cancer at all.”
Ok….I’m a big girl. I can deal with it.
He was right. When I finally sat down late that night and Googled Glioblastoma Multiforme everything screamed HORRIBLE, AWFUL, TERMINAL, PROGNOSIS NOT GOOD.
I hated Google that night.
My dad had surgery the next morning and they removed as much of the tumor as they could. Unfortunately this type of cancer has little “fingers” that grow off the sides of the tumor so there is no way they can get it all. They also found a satellite tumor lower in his brain that was inoperable.
This is a FAST growing cancer. I asked the neurosurgeon how long he thought he might have had this. He said as little as 2 months.
So it can grow back that fast again…..
My dad recovered from surgery amazingly. He was up and walking the next day. He started being able to hold a conversation a few days later. He went home 5 days after surgery. He has his sense of humor back. He says he feels better than he has in months.
He started chemo and radiation last week. These will slow down the tumor’s growth. But won’t get rid of it.
If you read the link above you can see the prognosis time we are looking at. I don’t even want to type it on here. I am pretty superstitious and have been knocking on a lot of wood these past few weeks.
I thought my dad would be here until I was in my late 60’s. His dad, my grandfather, is still alive. He is 94.
Life changes so quickly. Time is short.
I am trying to make the best of it, and being positive.
I am failing miserably.