i am a wimp

For side effects from my infusion that wasn't supposed to come for a month, I sure did get a lot after only two days.  This better not be my new norm.  I must be too much of a wimp.  I can't take this.  It immobilizes me.  And I get to do it again this week.  Why do I have to always be the worst case scenario?

I am NOT going to define me as the lady with cancer

I have realized something I really don't like that I do.  It dawned on me a few days ago. I define myself as "Terry Lynn Warner who has Cancer".  I have lost my identity.  I may have cancer, but why do I define myself as that?  I know it is the focal part of my life, like it or not.  But why does it define me?  Is that what I am known for now?  Poor Terry Lynn who has cancer?" I don't want people to define me as that.  But first of all, I have to quit thinking that way!!!!!!

I am Terry Lynn Thatcher Warner.  I grew up in Payson, Utah and lived on a farm. I am the oldest of three brothers and a sister.   I had / have a loving family growing up and I loved life to it's fullest.

 I went to Weber State where I met the love of my life.   We dated for a little over a year when we got married in the Provo Temple. I was very young when I got married.  Only 19 years old. We started our family quickly, and I became a mom, 10 months later.

We had three more children by the time I was 27 years old, which was when my mother died.  We had lots of struggles with health issues with each of our children during our years of marriage but had what I felt was a happy life.

I have loved  my callings in the church.  Especially with the youth.  I knew that was my forte.

We have now been married 41 years, and life only gets better, believe it or not.  Cancer or not.  I look into eternity a lot now and imagine Kim and My future on the other side of the veil.  I want our children there with us living on the same street and our grandchildren.  I love them with all of my heart.

I love the Savior.  I know He has walked with me many, many times during my life and He has never abandoned me.  Sometimes He carries me instead of walks beside me I think.

This is who Terry Lynn Thatcher Warner is.  I am not the lady/neighbor/ friend who has cancer.  I may have cancer, but I will not define myself as that anymore.  There is more to me than that, so I need to act like that.  I am putting the blame on myself.  Not on anyone else, but sometimes I do think the new people in my neighborhood only know me by the lady with cancer.  Now you know the first of the story.

My first Infusion day at Huntsman

My first time hooked up to my infusion.  For the first time, I got to use "Lucy", my port. (St. Lucia is my favorite port.  Lucy for short).   I have had her for almost 3 years and finally get to keep her busy!

Two necklaces from Shane he wanted me to be sure and wear during my infusion.  The kids birthstones on the round one.

 

 

Oh, what a week last week was.  My infusion was set for 2 different days, and then the last minute the night before, I would get a call telling me never mind.  My infusion drug hadn't come yet.  When it happened the second time, I told my nurse that a lot of planning had gone into making it possible for us to make that appointment and mentally it is hard to gear up for something unfamiliar and new and then have the rug pulled out from under me the night before.  She knew I was not happy about it.  I hung up the phone and called Kim at work and I started crying I was so upset.  They wanted me to come almost another week later.  After trying to make that schedule happen and now it was cancelled, Kim asked for the phone number and the person he was supposed to call.  He called, and he told them exactly how he felt about it all and calling the last second and how hard it was for me to keep revamping my mind and how hard it was to have that appointment canceled after trying to make it work with our schedules. He told them that for such a classy place as Huntsman, that we were not impressed so far.  WOW, DID THAT PHONE CALL CHANGE THE EVENTS OF THINGS!!!!

Within 5 minutes of Kim's phone call, I all of a sudden became their #1 priority in the infusion department, and magically........ my infusion drug arrived......in that 5 minute time!  They told me that I could come in that afternoon or tomorrow.  Really?  How did that all of a sudden work out?

I had to quickly make plans to get a ride to Huntsman the following day and Kim would meet me there after work.  I called them and they told me that I could come at any time I wanted since I was high priority.  My infusion room was a private room with a bed in it.  Most people were in "pods" as they call them in a huge room.  Here we are in a private room!!  Even the Doctor came to the infusion floor just to meet with me.  That doesn't happen on Fridays, but he did. I was treated like royalty!!!

I realize now that infusion day will last several hours, so I need to prepare for that.  They want me to have my next one in 2 weeks.

I also found out some not so good news.  My doctor told me 1 in 4 this drug will work on.  But the one its works on, it works really good.  If it doesn't work, he will try something else.  I WILL BE THE ONE!!!!!

Next week is coming fast!!

I go to Huntsman next week for my first infusion of immune therapy.  A little bit intimidating.  I did not get into that one drug trial that was full, but we are trying another drug.  It is Optivo.  I hope it helps me.

My first trip to Huntsman Cancer Institute

We went to Huntsman Cancer Institute on Thursday.  It was our first time ever going there for both of us.  I have a friend who gave us some good advice of how to get there and what to do when we got there.  May I say that I loved the Valet!!!

When we went through the front door, these stairs were so beautiful I had to take this picture, but this picture doesn't do it justice.

We were treated like royalty the whole time. I have nothing but good to say about the place.

When the doctor came in to see me he said that he had looked at all of my chart papers and that he had never seen liver cancer like mine.  That he really didn't know which direction to go with me since I didn't have a cruddy liver and that mine was good.  He asked me a lot of questions about how I feel day to day, and just all around.  I feel like a pioneer in this kind of liver cancer.  It disheartened me that he hadn't seen it before, but then not one doctor that I have seen with my cancer, has seen it before. I really thought he was going to send me home and tell me he couldn't or didn't know how to help me.  I was trying to hold back the tears.

Then he came over by us with a paper and wrote down 3 different things we could do.  One was a drug study that was closed to any more people right now.  There were 4 people on a waiting list.  When the drug company opens it back up, they let in 5 at a time.  I would be the 5th.  Unfortunately, we don't know when that will happen. So he is trying a different immune therapy that will try to get my immune system to kick back in and fight the cancer cells, which it isn't doing.  They want me to start an infusion of this drug in two weeks.. Meanwhile, we will see if I get to try the other drug study if it opens up.  I really want it to open up.  He said if the immune therapy works, it could work for a few years.  That was encouraging to me. The chemo alternative would only work about 3 months. 

It was an overwhelming day to say  the least. But I cant be in a better place than Huntsman!!!