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!

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!

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

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!!!

Peace!

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.

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!

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!

I watched tonight as my dad watched his oldest grandchild (my niece, Celine) graduate from high school. Sitting two chairs from him many things went through my mind. Will he be ok? Will his legs get too swollen? What happens if he gets coughing too much? Of course, he did cough and tried to control it the best he could. His legs did swell even though he tried to keep them up a little.

But the one thing I wondered was, will he be here to see his youngest grandchild (my son Jonny) graduate? I know I say I don't try and think too far in the future, but it does sneak up on me. And as I looked at Jonny (and the rest of the family sitting around us) I am again grateful that we atleast had this day together. Each day is a gift from god.

I am also very grateful for the AMY Support group. After only being a member for a few days I have already gotten an outpouring of support. I am inspired by reading about what others are going through and getting their thoughts. I am also excited about the opportunity to go to a meeting in Chicago this month. I talked to dad and he seemed open to it.

Sometimes I wonder if my dad is fully in this fight for his life like the rest of us are. I worry he is losing hope. It was good to talk to my brother tonight. As a family we are very in line with each other. So, I will go to bed tonight and say a prayer for a good day tomorrow. I also send my thoughts and prayers out to the other families fighting this disease. God bless!

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

I am very grateful for this saying. I learned it in the safe rooms of AA/Alanon. Who would have thought that something I thought would be so devasting - my husband's alcoholism/drug addiction (I am proud to say his is sober today and I love him so much) - would bring me wonderful gifts. I find the slogans are helping me through this time with my dad.

One day at a time - each day I wake up and say a prayer that we have another day together. Altough he lives an hour and a half away from me, I can still talk to him. Actually, I can tell in his voice if it is good or bad day - he can't hide it any more.

Let go and let God - At first I was very mad at God for what he has done to my dad. I kept asking, why God? Why are you doing this to him and our family? I now realize I just need to turn my dad over to God and know that whatever he has planned for him is what is meant to be. This is all easier said than done, but it is a must!

First things first - I can't worry about what needs to happen months from now. I need to focus on today - keep the priorities in order. PRIORITIES - wow - that is a hard one for me. I am a mother, wife, daughter, sister, aunt, employee, volunteer, etc. and I feel like I let people down if they are not my priority. What I realize is that I am my number 1 priority and if I keep myself in order, everything else is easier to work with.

I am grateful for today and will call my dad once I am done typing. Only 12 days till his next appointmnet at Mayo. I began preparing a binder with all my notes from all the appts. It is helping me keep everything in order. I also have my ongoing questions to it, so I don't forget to ask anything. I am going to ask a few hard questions this next time - God help me be strong for the answers.

Thanks for listening :)

I am new to this Blog thing, but I feel like the best way for me to stay sane through this time with my dad is to write about it. Papa Jim is the name that my kids, Jonny and Robby and my nieces, call their grandpa. My dad's real name is Jim Zahn.

First I need to tell you about my dad. The facts: he is 70 years old, has been married to my mom for a long time (don't count the few years they were divorced from each other). He has 4 brothers and they were raised by people that were not their real parents, but loved them just the same. Dad had a tough life growing up, but managed to make something of himself. I am very proud of that about him. I have an older brother, Marty. He is married to Dee and they have three girls - Celine, Amber and Rachel. My dad's passion is his cabin on the Mississippi. Since I was a little girl this is where we spent every weekend. Actually, the cabin is why I am even starting this blog.

This past memorial day weekend was the first nice one in a LONG time. And so while all their friends were enjoying boating and time with family, my dad could not. It hit me pretty hard. There was no boat in the water, no pulling his grandkids on the tube, no late night fires or fun in the sun. Instead he watched from the shore as his friends pulled his grandkids tubing and went to bed early as others stayed out and talked.

This is not the man that raised me - I am a daddy's girl. And even though I am 38 years old, I will always be. I understand the reality that we will all lose our parents some day, but watching your parent fight a disease that has no for sure answers and that people can't exactly tell you why they have it is very painful.

I realize that no one may ever read this, but the ability to put it ou there is helpful to me. I will add more later about how we got to this point.