39 Week Update

We enjoyed a nice Christmas with my parents this week. On Sunday both of my siblings came down and we had a nice dinner. My dad was in good spirits. Quiet, but happy. Then my parents stayed in town and spent Christmas with us. Dad does much better in the morning and was alert and participated in opening presents. Even commenting on different gifts and how much he liked them. It was a bittersweet day. I kept having to tell myself to stay in the now and not think about the future.

Last week my dad had a post surgery MRI to get a starting point for the Avastin they want him to start in January. It was routine, and we didn’t think much about it. My mom got a call the next day from the doctors office saying that there was some swelling around where they had inserted the chemo wafers but that everything looked good. They wanted to see him after Christmas to plan what they were going to do next. Then my mom got 3 more calls during the afternoon. The radiologist had looked at the MRI again, and the oncologist. They were wrong. It isn’t swelling, it is new tumor growth. I am dumbfounded. He had surgery less than 3 weeks before the MRI. They had removed the tumor. It is growing that fast. WOW The doctor said to enjoy Christmas and that they would have a phone conference when they got back to town. Which is today. I am paitently waiting to see what they have to say. I’m not so paitent. I’ve called my mom twice in the past hour. She is still waiting for the call.

My mom and I had a good talk while she was here. I told her that she really needed to educate herself about the Avastin and see if the cost and the time it MIGHT give my dad will be quality time. I know my father doesn’t want to leave my mom with a huge amount of debt. I have read that the Avastin is very expensive. I told her that she needs to check all her options and talk to dad about it. Although he wouldn’t remember the conversation 10 minutes later. He is struggling with memory and logic. Example, we had a cheese ball and crackers out on Christmas eve. He loves that stuff. We also had a plate of cookies on the counter. I came in the kitchen and my dad was putting the cheese ball on a cookie. This morning my mom said he was trying to make orange juice with the hot chocolate maker. He is forgetting names unless you are right in line of sight. My mom says when he prays at night he says “Please bless the 2 girls and the boy.” meaning me, my sister and my brother. He subtitutes words. He told me last week that they had put up all the Christmas cardboard around the house. (Decorations) He isn’t in pain as far as we can tell. He smiles a lot, but is content to just sit and do nothing. He hasn’t lost all of his sense of humor yet, but is struggling with understanding the meaning of sentences sometimes, especially sarcasm.

So I will sit here and wait some more for news from my mom and the doctors.

I am so glad we had this Christmas with him. It was a happy day.

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A Picture Can Say A Thousand Words…….

I wanted to share an experience I had  by posting an email I sent my mom today.

Today I was looking through all the pictures Steve (my brother) scanned for your anniversary slide show for Aimee and Kimberlee (my cousins).  They mentioned that they didn’t have many pictures of them when they were younger and I said I would look through them and see what we had.  So I went through each picture one by one.  At first it made me really sad to see all the pictures of dad younger and growing up.  Then all of our family pictures of us growing up.  I stopped on this one.  Then I realized wow, we have had such a good life.  We have done so much. Gone so many places.  Done so much together.  It made me sad, but gave me peace.  Dad is amazing.  He has had such a great life.  He has been the best father anyone could ever have.  We are lucky.  He may not have another 5 years but we have had 40+ with him.  We are blessed.  Thank you for my life.  Thank you for the unconditional love.  Thank you for all you have done and still do for us.  I couldn’t imagine a better life.

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Peace.  What a wonderful feeling after so much anger.  Don’t get me wrong.  I am still mad.  But have peace that my dad has had an amazing life and in turn has given me one.  I am grateful.

(Yes, we have matching shirts.  I think my mom had one on too.  How awesome is that??)

What A Difference Morning Can Make

The previous post was pretty dark and depressing.  Sorry.  That is just where my mind had been for the past few weeks.

I talked to my dad this morning and he sounded good and we actually had a conversation.  So I guess there is something to the idea he does better in the morning.  He knew it was me and we talked about them spending Christmas with us.  He was still a little slow, but it was night and day difference than when I talked to him the day I started writing the previous post.  (That took about 4 days to write.)

He says he feels great.  No pain.  Hates dragging the oxygen around.  He gets his staples out on Monday.

They always say the first few days after the surgery are the worst.  I think that goes for family members too.

I haven’t cried today.  That is a good start.

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.

Surgery Updates via Facebook

I am so busy getting back into the swing of things at home and work since being gone that I don’t have much time to post right now.  But here are a few updates that I copied and pasted from Facebook.  I will write more later this week as there is much news to share.

Friday November 30th
Dad update – Very successful! They were able to remove the tumor and put the chemo wafers in. He is out of recovery and on his way up to his room in the Nuro-ICU. The doctor is very optimistic that this could give him another year or two. Thank you for all your prayers and concern.

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Friday Night November 30th
I just have to say my father never ceases to amaze me. He is laying in the ICU with staples in his head after having brain surgery and says to me “There’s my girl. How are YOU doing today?” Oh wow….how did I ever get so lucky. Amazing father. Amazing man.

Saturday December 1st
Dad update- He has been moved out of the Nuro-ICU and onto the recovery floor. He got up and walked today and is eating real food now. They think he may be able to come home Monday. He has bounced back remarkably well this time. So much faster than before. Thanks to the nurses in the ICU. They are wonderful. So impressed at the quality of care he has received.

Monday December 3rd
Dad update- he was struggling yesterday and late last night they found that he has multiple blood clots in his legs and lungs. They went in around 2am this morning and put a device in that will “filter” the clots so they don’t go to his heart. He will be in the hospital for a few more days now.