I have been angry today. This is the day I have been dreading. The day my dad didn’t know who I was. Granted we were on the phone so I wasn’t right in front of him. But even after my mom told him it was me he forgot within a minute. He was polite and tried to hold up his end of the conversation. But he stumbled over his words and thoughts. I told him I was glad my sister was there to be with him and he asked me “who”. Your other daughter dad. Oh wow.
Lets back up a few days.
Last Thursday I get a call from my mom saying that they may not be able to do surgery due to some of the results they got from my dad’s pre- op EKG. They were on their way to see a cardiologist. It turns out my dad has a right bundle branch blockage in his heart. It is an electrical issue that affects the beat of the heart. Since it wasn’t an actual blockage in his main arteries in his heart they felt it was ok to proceed with the surgery. We drove the 2 hours to my parents and spent a nice evening. He was tired and I could see some of the same confusion as I did before his diagnosis, but not that extreme. He was anxious to get the surgery over with and move on with the next phase of all of this.
Surgery was Friday. The tumor was just to the right of his original tumor so they were able to go in at the same place as before. So less trauma to his brain. The surgery only took about 2 hours. Last time it was more like 4. The doctor came and talked to us afterwards.
The tumor was about 3 inches long. Serpentine in shape. He said it reminded him of an anchovy. Huh? It was easily removed and he got as much of it out as he could. He also said that there were some main blood vessels in the area he cleaned up. I don’t really know what that means. They were able to put the chemo wafers in that will slowly release into his brain and eventually disintegrate. He was very optimistic even going as far to say we could have another 2-5 years with him. What? Really? You are really saying that to my mother? There is no way on God’s green earth that is true. I’m not a doctor, but I am not stupid, naive, and gullible. I was mad. Fuming mad he would even give my mom that kind of news. I later talked to a few of the ICU nurses that commented on how they couldn’t believe how fast this tumor grew after comparing his MRI’s. Then they too couldn’t believe that the doctor gave my mom that prognosis.
My dad went from recovery to the Nuro-ICU within an hour. Later that day when I walked into his room he reached his hand out to me and said “There’s my girl, how are you doing?” He is laying in the ICU with staples in his head after having brain surgery and is asking ME how I’m doing.
That is how amazingly awesome my dad is. That is why it is so hard to watch him go through this. I am glad that at least he doesn’t understand most of what is going on and isn’t aware that he has changed and is declining.
The rest of that day he was pretty alert and aware of what was going on. He got up and sat in a chair for while. Saturday he got up and walked and started eating food. But his awareness was declining. When I left to go home he wasn’t able to pay attention long enough to say goodbye. I attributed it to being more active and the fact that his swelling around his face and head was affecting him.
Late Saturday afternoon they moved him out of the ICU and up to the recovery floor. My sister said he was doing well and getting up and walking “laps” around the floor. Same for Sunday and they even talked about letting him go home Monday morning. I called and talked to him Sunday night and he couldn’t even finish a sentence. Again he stumbled over his works and stuttered a lot. My mom said it was because he was tired. She is still in rainbow and pony land. In denial. But hey, if that is what gets her through fine. But I felt that it was something more and just hoped that the doctors would figure it out before they sent him home.
4:40 AM Monday morning my phone rings. Nothing good come from phone calls that early in the morning. In the minute it took to wake up enough to answer the phone I mentally prepared myself for the worst.
It was my sister. Around midnight the nurses noticed he was having problems keeping his oxygen levels up and was very confused. They did an emergency CT scan and found that he had multiple blood clots on his legs and lungs. They called the emergency cardio team and they inserted a blood clot filter in his heart to break up the clots before they got to his heart. It was a relatively easy process. They went in through the vein in his neck.
Monday they wanted him to walk as much as possible. They did another CT scan to see if there were any new clots. It ended up he had a rather large clot on the back of one of his legs. They put him on a low low dose of blood thinner. They don’t want to give him too much so if won’t cause any brain bleeding.
The doctors felt good enough with his progress to send him home on Tuesday. They sent him home with oxygen. He forgets why he is wearing it. He will ask my mom and she will tell him and then 10 minutes later he will ask again. He tries to take it off and my mom has to explain AGAIN why he has it on. He is extremely tired and taking even a shower wipes him out.
Both my mom and sister say he does better in the morning and of course I call him at night because I am at work during the day. I don’t spend all day with him so he very well could be doing better. But having your dad not know who you are is heartbreaking.
Their next appointments aren’t until next week. I think they need to go in now and see if he needs more steroids. Maybe that will help with the confusion. But my mom is content to wait. I have to respect what she wants to do. I would be going batshit crazy right now scrambling if it were my husband. But she and I are 2 totally different people.
I have been feeling guilty lately for how angry I have been and how negative this all makes me. I try to stay positive but honestly there is absolutely nothing positive about this damn disease. My father hasn’t been himself since the beginning of March 2012. I try and try to remember the last time he and I had a normal conversation void of this underlying beast and when he was in his complete mind frame. I can’t. It makes me sad. Then it makes me mad.
Yes, I know I should cherish the time we have together. But really, this isn’t my dad. At least not the father I remember having for 42 years. I hate how all consuming this is. Honestly I want it all to be over with. I have been grieving from the day he was diagnosed. Almost 9 months. I love my father. But I am ready to move on to the next step of grieving.
So now you can tell me how insensitive this is and how horrible a daughter I am for feeling this way. I can imagine how all this looks from an outsiders point of view. But if you have/are going through this I am sure you understand and feel the same way, at least to some degree. I am just stupid enough to vent it all on my blog.