36 Week Update

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.

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3 thoughts on “36 Week Update

  1. This is a comment from one of my good friends who lost her dad a few months ago to Multiple myeloma (cancer of the plasma cells).

    I just read the post on your blog about your dad. I am so sorry! It sucks pure and simple…there is no way around that. I wish that no one had to experience this pain. My mom was similar to your mom in that she wanted to believe some of the more hopeful prospects that she was told and now I think she is struggling because of that. She doesn’t say anything to me, but she does to my sister who is living there right now and she says things like that she should have questioned more or fought harder to get them to do more. It breaks my heart for her. It doesn’t do any good and it just makes it harder for her. I do think the doctors did what they could. I think they were good doctors…so I wish they would have found it two years earlier when he started having all his health issues, of course, at that point he probably would have been well enough for a bone marrow transplant and that could have made a huge difference. I don’t know why I’m telling you all this…just know that I love you and am thinking about you and have your whole family in my prayers.

    Oh, I also wanted to mention that the steroids they put my dad on caused him to have early onset dementia so unfortunately that is something to worry about as well.

    It is hard and no one can possibly understand exactly how you feel or what you are going through. I hated the end with my Dad because I lost him months before he ever died. He just wasn’t my Dad anymore. Those last couple of days were beyond heartbreaking, but I needed them to be ready to let him go. I got to the point where I literally just prayed to Heavenly Father to take him and let it be over, so I really do understand. It sucks!!! I wish I could just give you a big hug and we could cry together as we talked about how lucky we are to have such awesome dads.

  2. The end of this post sounded so much like me, sorry that you reached that point already.

    We grieve them every day even though they are still with us, just not the person they used to be. We grieve because there is nothing else to do sometimes, when all cheering up fails, when everything sucks big time and it just all gets too overwhelming to deal with.

    About 1 or 2 months before Mom died, the doc told us that her tumor was receding and it looked good up there in her brain. It never made sense to me because even though he told us she was better she was doing so much worse and I knew it couldn’t be true. And I was right.

    Don’t get too mad at yourself for grieving, we can’t help how we feel. I don’t regret it, all the times I wished she would leave already because I was ready and because I knew I couldn’t do this any longer. Take care!!

  3. I know excatly how you feel. It is a horrible diesase that just wrecks havaoc on families that are dealing with this beast of an illness,
    You are helpless to do anything and have to watch what it does slowly as it robs you of your loved one.
    I know as I watch my husband deteriorate more and more each day.
    He was the most healty man I ever met and all of his muscles are gone leaving skin and bones.
    His stomach and face are bloated due to steroids. Bleeding uncontrolably at times due to other drugs.
    I know he is aware of all these changes and that he is slowly dying and there is nothing more painful than this slow death!
    Yes I understand how u want this to be over so as not to watch the suffering..
    SInce we have no control over this just love him and tell him this every day you can. One day he just wont be here any more..
    aloha

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