Wednesday, June 16, 2010

Another doctor appt has passed and now we begin again!

I won't bore you with all the details, but the recap is pretty easy:
- his light chain count has gone down. It is now at 10. That is great from where it was at in January (52). Normal is 2, so we are getting close
- he starts his next round of chemo today
- his echo showed some additional damage to the heart, but we knew that was possible, because until his light chain is normal, that darn bad amyloid is still working around in his system
- he is going to see the pulmonologist in Mayo soon about the cough
- he is also going to see the cardiologit at Mayo for a second opinion - YES - I am very happy about that
- his kidneys are doing ok

So, I think I have become that crazy lady that doctors/nurses dread seeing come into an appt. This time I had my binder ready with all my notes and list of questions. Thank goodness the doctors/nurses at Mayo are VERY patient and understanding - they must get special training that other hospitals don't give! :)

On the multiple hour drive to Mayo I kept picturing myself "getting mean" about wanting answers like I had to do in Waterloo. That I would need to stand up and pound my fists and say - "Don't you get it? Don't you know who this man is? This is MY dad!" But I didn't have to! Whew!

Instead I left feeling very drained, but very content about the next steps. This will continue to be a struggle, but I am so thankful we are where we are!

Thanks for ALL the prayers!

Sunday, June 13, 2010

Where does the weekend go? It is going to be a busy week ahead. Give me strength.

Tuesday is dad's next appointment at Mayo. I am more anxious for this one that any before. It could be because they are doing more tests to see how things are going. I am hoping for the best but preparing for the worst. It will at least be good to have some more information on exactly what this thing is doing to him.

I am also very prepared with some questions for his doctor. The more I read and research, the more I wonder about certain things. It isn't that I don't trust his doctor. I absolutely do. I just want (or should I say need) my parents to really "hear" the answers. I really need my parents to understand how much my dad's diet affects all of this.

I am thankful for all the prayers and support I have going into these appointments. It does give me the strength that I need to make it through.

Peace and good night. Monday will come too soon!

Friday, June 11, 2010

It is a beautiful friday afternoon. The kids are done with school for the summer and enjoying the pool and hanging out with friends/family. I am counting the minutes till I can leave work (I love the off at 3 pm friday). And my hubby has the day and night off, so we can enjoy some much needed alone time together. How wonderful it is to have a day like this.

Life keeps moving and you can either decide to hop aboard or it will leave you behind. As much as the ride can have its curves, bumps and scary moments. It is also filled with pleasure, smooth times and surprises. What a ride I am on right now.

We have a good friend of the family that is dying. Her name is Sue. She and her husband, Doug are wonderful people. She has chosen to live each day to fullest until she can't any more. We had the pleasure of spending time with them a couple weeks ago. It gave us a chance to just talk. We didn't dwell on the fact that we are not sure how long she has (at best - maybe till the end of the year?). Instead we talked about good times and everything that is going on in our lives. It was a great visit.

Robby really struggled when we said good bye. He realizes he never knows when it might be our last good bye to her. He hugged her for so long and cried. Many of us cried watching them. My son has been so postively impacted by Doug and Sue, that it is hard to not feel like that.

My mother-in-law had a chance to see Sue a couple days ago and Sue said something to her that I will hold close to my heart. We were concerned that maybe Sue felt bad about Robby getting so emotional about it. But Sue just said to her it was OK and that it met alot to her. In fact the words she used were that "she would take that to her grave". Wow! I just love that lady! God will truly have another angel when she comes to his gates.

Pray and have faith! Peace - Jamie

“For nothing will be impossible with God.”Luke 1:37

Thursday, June 10, 2010

Explaining illness to kids is very hard. My kids (15 and 10 yr old) are both very aware of their papa being sick. I can't hide it from them. It is so evident based on just how he looks, all the doctor appts he goes to and how tired he is all the time.

But how do you really explain this to them. AMY is such a weird thing to put into words. Cancer is a scary word. I know many doctors don't call it that anyway. Although, our doctor says you do just based on how it is treated. I just keep praying that god will give me the right words when I need them. :)

I think about a book like - "What to expect when you are expecting". Everyone reads it when they are having a baby and figure out exactly what they should do. I want a book called - "What to expect when your family member has Amyliodosis". If someone finds it let me know!!!


Wednesday, June 9, 2010

The song I danced with my dad on my wedding day. It says a lot! :)

"Wind Beneath My Wings"

Oh, oh, oh, oh, oh.
It must have been cold there in my shadow,
to never have sunlight on your face.
You were content to let me shine, that's your way.
You always walked a step behind.

So I was the one with all the glory,
while you were the one with all the strength.
A beautiful face without a name for so long.
A beautiful smile to hide the pain.

Did you ever know that you're my hero,
and everything I would like to be?
I can fly higher than an eagle,
'cause you are the wind beneath my wings.

It might have appeared to go unnoticed,
but I've got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you.

Did you ever know that you're my hero?
You're everything I wish I could be.
I could fly higher than an eagle,
'cause you are the wind beneath my wings.

Did I ever tell you you're my hero?
You're everything, everything I wish I could be.
Oh, and I, I could fly higher than an eagle,
'cause you are the wind beneath my wings,
'cause you are the wind beneath my wings.

Oh, the wind beneath my wings.
You, you, you, you are the wind beneath my wings.
Fly, fly, fly away. You let me fly so high.
Oh, you, you, you, the wind beneath my wings.
Oh, you, you, you, the wind beneath my wings.

Fly, fly, fly high against the sky,
so high I almost touch the sky.
Thank you, thank you,
thank God for you, the wind beneath my wings.

Tuesday, June 8, 2010

I pray every morning. This morning something occurred to me. Not everyone knows this but my brother and I are both adopted. I have always believed that we were specially chosen for my parents.

When I was a young teen I was at a baseball game and an older woman came up to me and asked if I was related to "so-and-so Zahn". I said I wasn't sure and turned to my dad who was sitting a row behind me and asked him. He said yes, that was my grandmother (his mom). Keep in mind I never knew her, she died shortly after my parents married. The next words to me out of this Lady's mouth were unbelievable - you look just like her when she was your age.

My dad later talked to the woman and found out she was a cousin to my grandmother and they played as little girls. When my dad told her I was adopted she about had a heart attack and swore I was a reincarnation of her. :)

I always knew there was something special about my brother and I being "chosen" for my parents.

Now, as dad fights this horrible disease it occurs to me even more. I am thankful for my brother (Marty) and sister-in-law (Dee). They work at St. Marys in Rochester and understand Mayo Clinic. Plus, they work in the "heart" area and are able to help explain things to my dad. They have been able to help with the appointments too and give us a place to stay when we need it.

Then you have me - that daddy's little girl - who has turned into a strong willed women (much because of him). On the night before dad was to have his first appointment at Mayo, the hospital he was at in Waterloo was not going to release him and said we would have to cancel the appointment at Mayo. That sure the heck wasn't going to happen and I went all the way up to the head of patient advocacy at that hospital and made sure he got out. You could say I got in somewhat of a fight with the doctor - and I would do it all again!

So, it is no coinceidence that I look like my dad and my brother looks like my mom - My family was truly meant to be. I love them all.

God Bless!

Monday, June 7, 2010

It is interesting how some days you just hear all the right things. Yesterday at church was just that!

The message was about being radicalis - my first assumption was that we were going to go crazy at church! But then I realized as Pastor Rex spoke that what it really means is "relating to a root". The first funny thing was that he talked about was vegatables and used the example of a radish and how it got it's name from this word - just so you know - one of my dad's favorite sandwiches is a radish and butter sandwich. He was a poor kid growing up and these were the types of things he ate and still coninutes to.

So, the whole radish thing got my attention. :)

Then what Pastor Rex went on to talk about is how we need to become rooted in christ and believe and from that we can bear fruit... “Blessed is the man who trusts in the Lord, whose hope is the Lord. He is like a tree planted beside waters, that stretches out its roots to the stream. It fears not the heat when it comes, its leaves stay green. In the year of drought it shows no distress, but still bears fruit” (Jeremiah 17:7-9).

This became so enlighting to me. I cannot change what is happening to my dad. What I can do, is stay rooted in my belief and trust in god.

And as a family, we need to stay rooted together, all growing from the same tree. Nourish each other with wisdom, love and support.

I am so thankful for our church and the people there! Peace and God Bless!