The final entry to the "THE ROAD I TRAVEL"

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It's with a heavy heart, that I make the final entry into the Blog of Terry Lynn Warner. This is Kim Warner, her husband, and was my blessing to have been married to her for 41 great years. Terry Lynn passed away peacefully at her home on Monday morning July 11th at 1:10 a.m. of cancer, which , as you know, fought valiantly for over three years..

I would like to thank you all for your prayers, thoughts, and kindness during her journey with that terrible disease.. I would like to thank CNS Hospice, Huntsman Cancer Institute, and Utah Cancer Specialists for the loving, kind, and professional manner in which she was treated.

May God our Eternal Father bless you for your efforts. May we all learn from her Christ-like example and the courage and fortitude she displayed.   Till we meet again my love!!!!

I can't take it with me!

I know when one dies, that they can't take any of their possessions with them, but it really hit home yesterday.

I bought a bunch of small jewelry ziplock bags for earring size, and some necklace /bracelet size bags.  I got my jewelry box which is about 3 feet tall and mated and bagged up all of my jewelry.  I have a nice ring for each of my daughters that I assigned to each of them.  As I was bagging up all of the jewelry, I had a hard time thinking of parting with some of them.  It was then that I was strongly reminded that I can't take any of my things with me when I leave this earth.  No matter how much I love it.

Infusions are over

Today was really a downer day. This roller coaster ride through cancer is not fun.  I want to get off.

My dear friend took me to Huntsman today.  She went with me to the lab to get my port accessed for blood sample's and  infusion and then in the room to see my doctor.  While she and I were waiting for the doctor to come in, Kim got there so the three of us were there.

He came in and first off he said that my liver function's have really gotten bad the last two weeks, and that he wanted to stop the infusion's since they were not working, including today's.  He said my bellyrubin had gone up and probably between 2 to 4 weeks my eyes and skin would start to turn yellow.  He looked very disappointed.  He said that there were 2 more trials he knew of that might take me, but that he wanted to take more blood and send out to a lab to have it genetically tested again like I did a couple of years ago, only then it was a liver biopsy I had to send.  This was just blood.  He will find out the results in 3 weeks of the genetic findings.  If my bellyrubin keeps going up, the trials might not take me.

  He essentially told us all today that we are most likely at the end of the line.  I asked him how I would feel at the end.  He said I would be very itchy, as liver cancer causes bad itching.  (That is already happening).  He said I would lose my appetite, (That is already happening.  I have lost 35 cancer pounds).  He also said I would want to sleep most of the time but that I shouldn't be in pain.  Liver cancer isn't a painful death.  That made me feel so much better. 

My friend, and Kim and I had a moment of tears and it was hard to hear.  He wants to see me in 3 weeks. 

My Dreaded Week Is Over!! :))

 

This is what my leg looks like when it gets out of the vacume mold having radiation.  It sucks all the air out and the plastic digs into your skin just like a seal-a-meal.  This picture was ten minutes after they took the vacume off.  I wonder what it looked like right after. Disgusting huh!

This was so awesome.  While I was in the infusion room at Huntsman, these good looking young men all walked into the infusion room and sang 3 songs acapella to all of us hooked up to infusions.  They were from Skyline High school mens choir.  They were so good.  I loved their first song.  It was a Disney medley of so many Disney songs.   It made me a bit teary that they took time out to come to the hospital and sing to us.  We also got a bag of different things in the infusion room from people who donated and worked on these bags for cancer patients.  There was probably about 15 things in the bag.  People are so kind. 

 

 

Oh my.  I don't know where to start about this week.  To start out, I went to Huntsman Cancer Institute every day.  Since it takes an hour there and an hour home, it pretty much took up a day.  I was so tired of going there.  Each day, a different person took me and I thank again, everyone who did. 

 

I was supposed to have 3 days of radiation.  I ended up having 4.  On day 2, I threw up in the middle of it and had to come out of the vacume and you can't move even an 1/8 of an inch or you have to start over.  I threw up, therefore they canceled the rest of the procedure. 

 

The day of the CT scan, I threw up in the middle of that also.  They were able to salvage what they had done, and just continued the scan after my sickness.

 

The big finding of the week was my doctor telling me about my CT scan.  It was bad news yet good news.

a.  When the doctor came in, he looked somewhat not happy and told me that my cancer is still spreading.  That is not what I wanted to hear.

b.  On the other hand, he wanted to see what condition I was in when he walked into the room.  I did not look nor act sick, like last time when I had so much pain ( I looked sick that day).  I was having a good day and was happy and he decided then that he could not stop my infusions yet.  Besides, we weren't even done with the radiation that was supposed to help kick start the infusion into working and doing it's thing.  He told me that he wanted me to have about 6 more weeks infusion, which means  3 more  before he calls it off.  Give it a little more time.

 

So I was happy we weren't scrapping the infusions yet. 

 

Friday when I finished my last radiation, I "graduated" from radiation and they gave me a blanket.  I was in tears when the last thing was done on Friday and I could go home.  It was a very exhausting week and I hope the things I did will help my cancer to stop growing and spreading. 

 



Three Years Later!!! Here is where I am in life.

 

Another infusion day at Huntsman.  Wearing my "Hope" key and chain that Shane gave me to wear on infusion day.

 

This puzzle is on the wall as you are going into the infusion room.  I have never seen this big of a puzzle before. The pieces are so small and they all look alike!!!  I love puzzles but I can't imagine trying to do this puzzle!!!! I would love to know how many pieces are in this puzzle.

Well, another infusion day over.  This was an interesting day.  The big thing I needed to do today was talk to my doctor about my pain.  Norco/Lortab and Percocet is not cutting it and I feel awful all the time since the emergency room on Sunday.  When I am in pain, I don't feel like myself and don't feel like doing anything.  I feel like a shell of who I should be.  The tears started spilling out when he asked me how I was doing.  We had a good discussion about what to do with my pain.  I have now been on my new pain plan for a day and I am so excited about it. It is like comparing black and white.  He told me again how I don't look sick and how hopeful he is for my infusion to work for me. 

I went into radiology to get my mapping/molds made of my body for round three of radiation with my cancer. (First radiation here at Huntsman).   I got a new tattoo for the radiation which brings the total to 6 now.  They are on my abdomen.  Just dots is all.  But noticeable. 

After the mapping, the nurse talked to me about the radiation and how extremely lethargic I will be for several weeks and especially how nauseated I will be.  I guess the nausea will get worse a month after radiation.  I will have three days of radiation.  Every other day.  Also, in between radiation days, I will have another infusion. That week will be a week I am not excited about in the least.  I am going to need extra will power and strength.  I feel weak in that area right now.  I have awesome friends and family who have already come forward and offered to take me back and forth to Huntsman that week, since Kim will have to work.  It's an hour away which takes up someone's whole day for me.  Thank you to all who have taken me so far.  I have deeply appreciated it.  I am sure it won't be the last time I will have to ask someone to take me.

I am so happy about being at Huntsman.  I wish I could have gotten there 2 years before.

Oh, and guess what?  Three years ago, on Mother's Day is when I found out something was really wrong with me.  I got horribly sick, and went to the doctor the next day.  The day after that I was told I had cancer.  Then that first oncologist is the one we disliked so much.  He was awful.  I remember that he told me I had just a few months to a year to live.  Now it has been 3 years!!!!  I am so glad you were wrong!!!

I need to get out of the doldrums.

Ok.  I need an attitude adjustment.  I feel so low and down.  I can't get past going to the ER Sunday after I had had such a much needed and relaxing vacation.  Then barely 12 hours later I am back in the ER telling me I need my gall bladder out.  My Huntsman nurse called me today and said that he thinks that I don't need my gall bladder out and that it is my cancer causing my pain. I can't take in deep breaths or hiccup or anything but normal breathing or my pain shoots through the roof. Today I seem to be feeling a bit better but Norco around the clock is not sufficient. I need something stronger.  The ER giving me the strong stuff in an IV makes me feel like "ahhhh, thank you".  But that isn't in pill form.  Percocet and Norco just don't cut it.  And with this worry about gall bladder, I have been a mess and not a very happy person. Tonight I felt better than I have since Sunday.  I just need my attitude to brighten up.  I feel sad and gloomy and frankly feel like giving up.  But I won't.  I am not a quitter so I need to perk up.  Sorry this is a lousy post, but it is how I am feeling.

I have my next infusion in two days and have an appointment with the radiation doctor to plan the radiation days in two weeks.  I would like a penny for every tear I have shed as of late.  I could take a bath in them there are so many.

If you chance to meet a frown, do not let it stay.......
Quickly turn it upside down and smile that frown away.
No one likes a frowny face, change it for a smile......
Make the world a better place by smiling all the while.

Vacation

Kim and I have been gone on vacation for 9 days.  We needed time to just relax and be away from our stresses..  We needed to go and have fun and not think about the "C" word....... and boy did we have fun.

 I got a wheelchair in the Salt Lake, Vegas and LAX airports which saved my bacon.  It was a long walk through those airports.  We also rented a wheelchair at both Disney days which also was the best thing for my situation.  Kim was my Knight in Shining Armor pushing me all over Disneyland up and down ramps.  It seemed like so many up ramps.  He was awesome. 

We got home Saturday night, and early Sunday morning I got that same pain it seemed, when I had pneumonia.  We went to the ER and they think it is the gall bladder and I am supposed to call my oncologist at Huntsman and go through him for whatever we do.  I felt so low at the ER yesterday when I was told that I would probably need my gall bladder out.  I just felt like that I couldn't take that on also.  Kim gave me a blessing last night to give me the strength mentally, emotionally and physically to be able to go through whatever I will need to.  I don't know anything about gall bladder surgery.  How long you are in the hospital or anything about it.  I guess I need to try and find out.

THE VACATION WAS GOOD!  VEGAS, ANAHEIM AND OCEANSIDE!  WONDERFUL!!

Huntsman radiation consultation

Today I went back to Huntsman to have a consultation with a Radiology Oncologist.  He feels like he could help me. That was encouraging. Radiation has always helped me in the past.

The plan is to go make my radiation molds when we get back from vacation and have radiation for three days in a row the day before I have my next infusion.
1- It will help with my pain in some of the tumors
2-  it will encourage the immune therapy infusion to kick in and get it working.

I was very encouraged.  There will be the side effects I had last time, mainly with me, no energy, lots of fatigue, and nausea.  I will be making many trips to Huntsman after our vacation.  I am glad I have this option.  It makes me very happy.

Infusion needs to kick in!!

 

The top picture is of Kim and I waiting to go into the infusion room. 

 

 

I went to Huntsman on Thursday. My oncologist talked to a radiology oncologist about me and showed him my images.  They both think that if I was radiated on a few of the tumors, it would help with my pain and kick start the infusion to start working.  So they made an appointment for me to see this new oncologist next week.

 

  We had a long talk about my future.  I learned that if this infusion doesn't work, that I most likely wont last through the summer.  That was sobering. 

 

We also talked a lot about me going on vacation to California next week.  He really wants me to go.  He said that it may be my last vacation and I need to go.  This is so nuts to me.  I see these terrifically sick looking people at Huntsman who look like they are in the last days of their lives, and then there is me.  I don't even look sick yet.  I almost feel guilty during my infusion because here I am plucking along looking normal while they look so ill.  And then I hear that I only have a few months left if the infusion doesn't work.  It just doesn't make sense to me.  But, you know........none of my cancer has made sense to me or any doctor who I go to. 

 

The only thing that has been different with me lately, is my pain.  I have several places that I hurt where I used to not.  He would show me on my body where new tumors were and sure enough, it was my new pain.  I pretty much have to take pain medication every day now and also something for nausea each day.  So I know because of that, things aren't going well inside.  It just isn't manifesting itself yet outwardly.

 

So that is my latest news.  I just keep praying that my infusion is going to work.  I am on a roller coaster ride like no other.

Funny Prescription!! And its legitimate!!

I went to my family doctor yesterday.  He told me that I don't need oxygen any more but I do need home health physical therapy.  It made me glad that I can toss the oxygen.

He also wrote me a prescription for when we go on vacation next week, to have a wheelchair at Disneyland.  It cracked me up.  I thought he was kidding when he said he was going to do it, but he was serious. He wrote a novel on the prescription about what I was going through and how I needed to not wait in line.  I did get a laugh out of it though. 

On a whole, on a scale of 1-10, I feel like a 5.  I am noticing that I have pain in many different places now than I have in the past.  Now that I am getting more tumors in new places, it is expanding in different places in my body and I am starting to feel them. 

I am getting stronger though.  That was my hope this week as I am going to Huntsman tomorrow for my third infusion. I just knew I needed my strength to be able to do an infusion so close to my hospital visit.  My oncologist said that about now, a month into the infusions, that my body should start responding to the infusion.  If it is going to work on me, it needs to kick in fast and stop the tumor growths and stop new ones, because they are out of control fast now.  I feel that this is my last chance.  I want to be that "one-in-four" to have this work.  I need it to be me!!

I cannot stress enough, how caring and loving my family, neighbors, friends and ward members have been to us.  There seems to be an act of service in our/my behalf daily.  It is so humbling and emotional for me to accept so much kindness from others.  It is so hard for me to be on a receiving end of service and ask for help in someway or another, and tears fall freely as I write this because I am so in debt to practically everyone I know for their kindness and service to me.  Thank you to all of you reading this who send me cards in the mail, take me to doctor appointments, bring meals, treats, phone calls, or just text me to see how I am doing.  It is so humbling to us both. 

Last but not least, is that I have an angel husband.  That is the only way to explain him.  He is so invested in my comfort and well being, that he amazes me.  Where does he get the mental, emotional and physical strength to always be there for me? Love constantly flows from him to me in assisting me.  I really couldn't do this alone.  Thank you Kim.  You will always be the love of my life.

These are my beautiful flowers I have gotten recently.  My kitchen looks like a florist.  It smells wonderful.  I had to show them before they die.  That's the problem with cut flowers....They eventually are gone.

ER- Hospital stay and Pneumonia

Good grief.  Where do I begin? Through all these new infusion reactions of intense muscle pain, lets add some more things to the pot and stir it all up, why don't we!!!

Kim's birthday was this week and we went away overnight for his birthday Monday night.  We had a great time watching the March madness finals, and just enjoying being away.  The next morning, madness broke out in my body.  At 7:00 am the next morning, I started hurting in my right side, abdomen until it was such gripping pain I actually thought I could pass out.  I was getting nauseous and the pain was so acute and sharp, I couldn't get off the bed nor turn sideways.  Only lay on my back.  Poor Kim had huge concern on his face.  He could tell something was not good.  He called Huntsman and talked to my nurse there and she was concerned because it sounded like it could be appendicitis from where the pain was coming from.  We went right to the emergency room.  I got a CT scan and found out I had three new larger tumors and gall stones.  Now the question was, was I having a gall stone attack, was the pain from the new tumors? Was it my appendix?  What the heck was going on?  I had no fever so more than likely it wasn't my appendix.  After 3 hours in the emergency room I went home to just watch for any fever over 100.4.  If so, I needed to come back.  I was in so much pain and in the evening I took my temperature and it was 101.  We looked at each other, and DID NOT want to have to go back to emergency, but we decided we needed to.

Then every test imaginable was run.  I was in so much pain.  They were concerned that it was gall stones and finally ruled out appendicitis.  Then a test came back showing that I had pneumonia.  At 2:00 in the morning they said that I needed to be admitted.  I can honestly say that that day was one of the worst days of my life.  I had never had that intense pain before.  I truly felt I was dying.  The question was, what was I dying from?

All the way as they were taking me to my room on the floor, I threw up like never before.  I don't even know how many times.  I was sicker than I had ever been.  I literally just wanted to die.  

After more scans and tests, they finally ruled out gall stones as the reason for the intense pain.  It was from the pneumonia is all they could find out.  The three new tumors were probably not helping things either. 

As I laid in the hospital I realized how thankful I was to not have those other possibilities and that I just needed to get better from the pneumonia. I know that I had people from the other side of the veil there cheering me on.  Sometimes in my sickest moments, I would look around the room to see if any of my dead family members were there.  I knew if I could see them, that it was my time, and I was going to tell them to go back!!  I wasn't ready to go "home" yet! 

This all started Tuesday morning and I got home from the hospital Friday night.  I was so glad to be home in my own bed, and not hooked up to all those things anymore.

I did have to come home with oxygen.  I just couldn't get enough oxygen by myself.  I needed the oxygen machine. It didn't take long before home health had it up to our house and installed the machine with a 50 cord to go all over the house.  I sure do feel better breathing with it.  I should only need it till the pneumonia is cleared up and I am breathing better.  What a week this has been for both of us.  We are so glad it is over.  I am just exhausted!

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!!! 

My appointment to Huntsman is finally made.

Huntsman Cancer Institute called me a couple of days ago.  Boy do I feel intimidated to be going to such an important place.  It's kind of scary.

I go there for a Phase 1 appointment which means they will see if I fit into any of their trials.  The first time going could last several hours.  I have no idea what I am getting myself into.  None whatsoever.  Maybe that's good that I don't have a clue.  I go on Thursday March 3.

Huntsman........ And grieving

News from my oncologist!!!!

He called me on Thursday and said he had talked to a friend at Huntsman and that there was a couple of experimental studies on liver cancer that he wants me to do.  He said he was optimistic about these studies.  He said he had seen patients in my position being helped by these studies.  He also said that he wasn't going to start me on chemo.  He just wants me to start on these studies. He said that if  he was in my spot that that is exactly what he would do.  He said someone from Huntsman cancer institute will call me the first of next week.  I am sooooooooo happy that I don't have to start chemo again!!!!!  Yea!!!!!

The last two days, I have been to a viewing for a family friend who died from cancer, and the next day, a funeral for a relative who lost his battle with cancer.  It has  really rattled me.  Both lost their lives to this terrible C word.  I have spilled  too many tears this weekend seeing myself in those caskets and it has been an emotional roller coaster.  I am a little down and need a booster shot with some happiness in it.  It's got me in a funky mood that I need to change.  I don't like feeling negative like this. Tomorrow will be a better day.  I just need to grieve I guess.

a little miracle for me

I feel like I just got a golden ticket in my Oompa Loompa bar!!!!

I went to my oncologists office today assuming I was going to hear the same bad news I heard a few days ago and how there was nothing that could be done for me.  I was prepared.  But guess what?  It didn't happen!!!!!!

He said that there was a medication he would like to try me on with minimal side effects.  It isn't FDA approved though.  And he has some friends at Huntsman Cancer Institute that know of studies on different cancers and he wants to see if a study is being done on my cancer, liver.  And between the two things, he says that because I am still strong and not sickly and in pain and have a bad liver, he can try me on these medications.  If I was sick, he would send me home and try to keep me comfortable as possible, end of story. But I haven't gotten sickly yet which is to my benefit.

He said he has worked with a man my age with the same cancer and in the same situation as me and he has been able to help him and it has been a year now.  Wow.  I was stoked!!  He wasn't too concerned when I brought up how fast I felt the tumors were growing.  He showed us how small they were and said if he could keep them that size and not grow any more, I could live a normal lengthy life even with those tumors and lesions.  He was all about being positive and acting like this was not the horrible scenario I thought it was. He said he was going to do his homework and find out what Huntsman had and what drug to use for me and call our insurance.  Wow!!  I then got my port flushed in the chemotherapy room and I went home a much less stressed woman than when I came in.  My life is still having miracles it seems.  This was another miracle I felt.  Thank you to all of you with your prayers for me.  It has been the seeds of my miracles.  I CANT GIVE UP!!!

The Beginning of the end

It is 4:00 in the morning and sleep is not possible.  Yesterday was a changing day for me.  A new chapter of my life.

I started the day having a CT scan in Ogden.  Then I came home to wait for my radiation doctor to call and tell Kim and I the news about it and the MRI.  I just haven't felt good about what I was going to hear.

Later in the day, around 4:00, 12 hours ago, we were told that I have 8 new tumors in a left quadrant of my liver.  These have surfaced in the last few weeks.  They have come fast.  Not only that, I have two lesions in my left lung and 6 in my right lung.  My doctor said that he can't do radiation to the liver tumors because I could have liver failure.  And essentially, there is nothing he can do.  I guess he called my regular oncologist and they talked.  Between the two of them, they said that there wasn't anything more that they could do for me.  I do see my regular oncologist this Thursday when I will ask about my time line.  I feel in my heart that it won't be very long because the tumors are rapidly growing.  The liver tumors are about a half inch each and the lesions in the lungs are about a quarter inch each.  It is the beginning of the end.

We called our kids with the tearful news.  How do you tell your kids something like this?  And how do they respond?  I then called my brothers and sister.  I told each child and sibling of my love for them.  Something I don't tell everyone as often as I should.

Kim and I had some tearful moments the rest of the day and evening.  He called his sister and brother also.  In our tender moments together, we talked about eternity.  Our sealing in the temple was the beginning of our eternal family.  That is the most important thing to me.

The bishop and his wife came over later in the evening and spent some time with us and I loved how he put it, that we will just be in different rooms is all.  He gave us each a blessing which I was so appreciative of.  Especially Kim getting one.  He needed one as much as I did.

It makes me so sad to see my children sad.  That is going to be hard is to watch them deal with this.  And especially to see Kim grieve.  To see the tears run down his cheeks is difficult for me.  But like he keeps telling me, we need to get our heads above the clouds and look at this.  Look at the big picture.  We know when we come to earth, at some point, we will die.  It's the plan.

Anyone reading this blog, I want you to know that I have a testimony in my heart.  I know that Christ is real and that my Father in Heaven knows exactly what I am feeling and my family is feeling and he is comforting Kim and I at this time.  I have been praying that he will comfort my children also.

I am not so good with words, but I have tried to write somewhat that is in my heart.

MRI not read yet. More tumors. Black tumors

I need to write a little about my MRI and doctor appointment yesterday, since everyone on Facebook knew I was going to find out how well the radiation worked.  The problem is, is that after we left St. Marks getting the MRI, we went to my doctors office to have him read the MRI and the radiologist hadn't sent the report yet.  So my doctor tried to decipher what he thought he could see.  What he did see was that the radiation had worked good on the tumors and there were a lot of black ones.  This is good.  In the left part of  my liver, in December there was three dots.  Those three dots are now small tumors.  This is not good.  There is also a spot on my lung that hasn't been there before.  He wants me to have a CT scan to get a picture of the whole lung so we can see what is going on.  After the CT scan, he will call me about both the MRI and CT.  So...... I play the waiting game some more.  I do that a lot it seems.      That's all I have to report right now.

I've lost my curl......

Hey, did I ever say about how my hair is hardly curly anymore?  Amazing!  I have just enough that it gives my hair some body.  I didn't think it would every happen!!!!

Two weeks post surgery. Doing well

It has now been over two weeks and I have had a very different and better experience this time.  I don't know why, but I have.  A tender mercy. I didn't have the post surgery syndrome either.  The acid reflux has been the worst of the after symptoms and even the tiredness seems somewhat less.  I feel that I can now get on with my life and try to be normal again.  I see my radiation doctor that did these past three surgeries on February 3rd when I will have an MRI and then he will tell me how the radiation did on my tumors.  Whew.  Important day!!

the Stages of my Life......

It's been a week after surgery and I am having such a better time with side effects, knowing what happened last time and trying to prevent it from happening again.  The dang acid reflux is really hard to regulate and keep from getting it.  Normal foods I can normally eat causes it and I have to take a lot of meds to keep it under control.  Nausea hasn't been as much a problem this time so far.  ( only thrown up once!). I really feel blessed for a respite in these side effects.  I just thought I needed to check in with my progress.

A touching thing happened the other night during our family prayer.  It was my turn, and as I thanked Heavenly Father for all the stages in life we have been able to have, I turned to mush!!  I lost it.  I remember being a newlywed.  Young parents learning HOW to parent, then the teenage years.  Remembering our oldest child, Tiffany's wedding.  Our first grandchild.  Being called grandma for the first time.  Becoming empty nesters.  And now having a terminal illness, that makes me look into eternity more and more.  Being so glad that I am sealed to my one and only love of my life.  Remembering all those things  that gave us our gray hairs.  But I am happier now than I ever have been believe it or not.  I can look past this icky part and realize that I have had a full life and I have no regrets.

Life is good!!

Radiation Day

Today is the day after my last radiation surgery.  Yesterday was the same thing I had done 2 other times, pretty much.  I found that I had a more enjoyable surgery this time than the last two.  Very good. 

I think I was on high alert with the nurse, Physician Assistant, and the doctor to make sure I got on all the meds to take care of all of the really bad side effects from last time.  All three of them went "overboard" to discuss medications I needed to take and when, to not have what happened last time. 

I don't think I have felt so sleepy as I did yesterday and I do now.  All of this medication has made me so loopy and sleepy.  My sleep is so good when I am sleeping.

I feel pretty good today.  I don't hurt anywhere really and don't feel nauseous.  Things are looking up.  The Doctor wants to see me in a month. 

Our Christmas Miracle

Christmas Eve was one of the most memorable events that I will never forget.  It was like it happened to somebody else.  Not Kim and I. 

Before Christmas Eve, we got a few Christmas cards in the mail, anonymously with money in them.  It was crazy and we didn't know why people were doing it. Then Christmas Eve day, someone brought by a huge jar filled with change and bills inside on top.  I brought it in the house and just sat at the table and bawled my eyes out.  Why were people picking us to be so kind to?  Why were they singling us out of everyone who needed help?  When Kim got home, he went through the numbness of it all like I had.  We were so humbled.

Then one of the girls who used to be in my young women class, showed up at my house with a card.  She told me that she told her mom that she wanted the money they would spend for her for Christmas and she gave it to me in her card.  Another tear jerker!!  A teenager giving up Christmas for me??? Why me???

I knew our kids had been up to something.  And we were about to find out.  After all of our Christmas Eve party was over and gifts opened, all of our kids and spouses got together to give us one last gift, and all these cameras came out.  I looked from one to another and they were all standing in a row pointed phones our way.  They sent us on a treasure hunt, and we came back with a vase of flowers and a wrapped box.  The box was opened and there was  stacks of $20 bills that seemed endless.  Kim asked them if they robbed a bank. We both were so touched.  I was again a bawling mess.  The excitement of the kids were so evident and we found out that they had all collectively participated in some way or another together in fund raisers for money for my cancer.  It was the most humbling experience.  That all of this money came from our neighbors, friends, acquaintances, ward members, non- members, county residents, people we didn't know, people our kids know who don't know us, people from literally all over the world!!! Anonymously giving money to us!!! To help with our cancer bills. 

After they gave us the box with the money in it, Emily had made a video with all of the kids and grandkids in it and showed parts of the three projects they did to make money.  It was so touching.  I couldn't believe it.  I still can't believe people did this for us!! It is sooooooo humbling and we have been entrusted with this money for my cancer care.  Wow.

 Just while I have been typing this post, the doorbell rang with another envelope from several families that  are our relatives near by.  (I will wait till Kim gets home from work and let him open it).  This is unbelievable.  Thank you.  Thank you.  Merry Christmas to all of you who participated in this special Christmas for us.  We wish we could hug each person. 

This is the video that our kids had for us to watch.  It was really a tender video to our hearts.  Thanks kids!!!    

Second Radiation Surgery date

Wow.  I didn't know that I hadn't written since the first of the month.  I guess because I haven't felt well that I didn't.

I have "so much" to write.  So many things have happened.

Let's go back a few weeks:  I think I had nausea for three to four weeks post surgery.  No appetite, and very little sounded good to eat.  Silly though, that I always thought tacos sounded good.  We went to Taco Bell or some taco joint " A LOT"!!!  I wonder why.  And fruit always sounds good.

Anyway, I finally got over sickness and tiredness.  No more needed naps or lying down to just rest.  And I started really feeling good!!!! Better than I have felt in quite awhile.

On the 22nd, we went to St. Marks and I had an MRI. (Remind me that I don't like those.  I forgot).  Then we went over to the surgeon who does my radiation down there.  I had a million questions it seemed from all of the things I went through post surgery.  All of them were normal, but I just had bad cases of all side effects, but still normal side effects.

We set another date for the second radiation surgery.  He never got into the left side of my liver to give any radiation.  There are black holes in places he did radiate which means the tumor is dead there.  I found out that "black holes" are good in the tumors.  And I have some.  They haven't had time to shrink yet though.

My second surgery will be January 6th. 

Fainting

I have debated for about a week whether I should put this on my blog.  Then I thought:  This is my journal of my cancer.  It is part of what I am going through.  Put it on the blog.

Last Saturday was our daughters birthday.  We went up to her house to give her a card before she left for the Utes game.  When I got home, I needed to shower.  I got in the shower and kept feeling extremely weak.  So weak that I was too weak to keep my arms up washing my hair.  I had not  a smidge of energy.  I felt faint and so I sat down in the shower.  I called Kim to come in and told him I felt like I was going to faint.  He got in the shower with me to help me back up, and that's all I remember.  I guess I fainted and he caught me.  He was really upset because he didn't know if I was alive or dead. I remember coming to and then instantly throwing up.  After cleaning us both up, Kim took me in to lie down.  It was Saturday, so he called the doctor on call.  Kim told him what had happened and he wanted Kim to take my blood pressure.  It was so low.  The doctor said this was common for having a Y90 surgery.  (That is the name of the surgery I had.) He said that 10-14 after surgery it was common to have post embolization syndrome.  And I was out 10 days exactly.  He said it was the worst part of post surgery.  (Hey, nobody told me about no syndrome!!!)

The doctor said I was dehydrated and if I couldn't get the top blood pressure number to go above 100, I would need to go to the ER and have them give me fluids.  Kim pumped me with fluids.  I have had a struggle keeping it over 100.  It hasn't been easy. For the next 24 hours, I didn't dare go anywhere in case it happened again. That was very frightening to us both. 

Thanksgiving and decorating the tree.

Kim put up the Christmas tree tonight, and I was too nauseous to help for awhile. I finally took some med. so I would feel like helping decorate. (Kim doesn't decorate the tree) .

I am still struggling with my health, but I think I am feeling a little better than I was.  Thanksgiving was very tiring for me, so after dinner I had to go lie down for awhile.  After a half hour, I was able to spend time with the family and be just fine.  Most days I need two times to go lie down and rest.  Mostly I can't sleep but the rest is what I need.  Radiation really zaps your strength and stamina.

I can't wait until this is WAY behind me.  It's a lousy memory so far.

Just throw me over a cliff.

Whining or not, I have not had a good week since surgery.  My stomach is either feeling nausea/sick or I am bloated and it hurts like heck, or constipation,or I have acid reflux to the point of no return.  (If any of you have reflux, you know how painful it is especially when it is out of control and has burned your esophagus all the way down to your stomach and you want to scream.) Then the right leg and liver hurt and ache from the catheter.  It has been a pretty unpleasant week.  I called first thing Monday morning to talk to my doctor about the reflux and I am now on a lot of med. for it.  I don't like all the prescriptions I am taking after this surgery, but the med. for nausea is saving me from sickness and hallelujah for pain meds.  I just am going in a circle from one thing to the next all day long, and not sleeping well makes it all worse. And to think that I have to do this all again?  Just throw me over a cliff before that day.

stop whining TL!

I don't mean to be a whiner 49er, but this surgery is kickin' my trash!!!!! I am not bouncing back like I did in the first one two weeks ago.  But I have to keep telling myself, I was filled with toxic material this time and my body is reacting to getting it out.  I just want it to hurry and let me be.  I want to feel like a normal person again and have energy and feel like getting dressed!  I don't want to be nauseous and feel sick and be in pain .  And I want to be able to sleep good!!! Ahhhhh. I need a good nights rest.  The rest I DIDNT GET AND THOUGHT I WOULD DURING SURGERY!!!  Today I have felt quite down, except for the sweet card I got in the mail and a package of Hugs I got from a neighbor, and a wonderful meal tonight from a dear friend.  Silly pictures from my sons family to make me laugh, and phone calls and texts.  Each was a booster shot for me of love and helped my spirits rise back up.  I have to keep reminding myself, " I Can Do Hard Things".

Second surgery over. I radiate!!! One more to go.

Today is the day after my surgery.  The doctor said it went well.. I hope so.  For the two hours in surgery, I again was kept groggy awake on purpose so I could hold my breath and blow it out when they told me to.  I was not too happy about this.  I was awake last time they inserted the catheter and hated feeling everything and hearing everything.  I really thought I wouldn't have to do it again.  This time was worse.  The nurse could tell when I couldn't stand the pain any more and asked to give me more pain med which I was thankful for.  I got nauseous after surgery for a bit.  I feel like a mag truck ran over me today, the day after.  I go see this doctor a few days before Christmas and have the (hopefully) final surgery December 30.  That's not positive but hopeful.

It has been hard to remember to stay three feet away from Kim because of the radiation.  He keeps forgetting too I think.  He sleeps in the guest room for a few days.  The hospital just called and said today probably would be my worst day and I hope so.

Everybody has been so kind.  Meals, cuddly blankets, phone calls.  It has made me feel good.  Thank you.

November 17th. Toxic day.

November 17th at 6:00 am.  I have my next date.  On this surgery we will blast the tumors with radioactive beads.  Then I will be toxic for 4 days.  I get to ride home in the back seat of the car while Kim drives.  I am going to hate not having companionship with Kim or anyone for fours days.  But I can sure talk on the phone!   Well, Kim doesn't have to " call" me, but he can talk to me across the room.  This doesn't sound fun at all.  It already sounds like I will be sent to the dungeon.  Ahhhh!

First Surgery Down at St. Marks Two more to go.

(Groggy pictures after surgery)

 

What a day. I have so much to tell about it.

 

First and foremost, the surgery mapping was a success.  They didn't have to cut off any blood supply to my liver, which we were told just before the surgery that they may have to do. The two doctors will ponder on the mapping for a couple of days to determine what will happen for the surgery.

 

Today, they went in my groin with a catheter, (which I didn't know would happen on this procedure also).  I was groggy through the whole operation so I could follow commands of: " Take a deep breath.  Let it out and hold your breath and hold very still".  I followed that command about 20 or so times for the next two hours.  In the catheter, they put dye through my veins finding the veins that went into my liver, and not out of my liver.  After the procedure, I had to lie in my bed for 3 hours holding my right leg very straight and not bend it.   I was very glad to get home.  But hearing about my next surgeries...........yes.....more than one more......won't be a walk in the park.

 

My next surgery will be in two weeks.  Not sure which day yet.  They have to order the radiation beads from Australia!  (Seriously?) The radiation beads will be precisely entering into 2 of my tumors in the liver, through the groin in a catheter just like today.   (I guess there are four tumors.  Not 3.) Here is the killer:

 

When I get home.  I have to stay 3 feet away from people for 4 days. Kim and I can't even sleep in the same bed.   I guess I will be lit up like a Christmas tree!!  LOLOLOL  I wont have to put a star on the top of my tree.  Just put me on it!!!! LOLOLOL

 

All silliness aside, the nurse told me as she was wheeling me to the car, that I will need someone with me for 3 days!!! I have no idea why.  And she said, "Give your grand kids loves and kisses before you come to the hospital, because you can't for a few days after."

 

Then a month later, they will do the same procedure again to the other two tumors in the liver.  This doctor was very knowledgeable. He is the only one in the state that used to do this surgery.  Now he has a partner, which I had today.  He came from Huntsman originally, and now is in private practice.

 

So, that is my day.  I haven't needed any pain meds, which I am happy about.  I have to not drive or lift things and take it easy for a few days. 

 

Whew!  One down.  Two to go!

 

Read the post below this.  This is what happened to me on the way to the hospital.   

Thank you mom for being with me! I am glad you remembered that Primary Song.

I know a name.
A glorious name.
Dearer than any other
Listen I'll whisper the name to you.
It is the name of mother

Mother so gentle and kind and true
I love you.
I love you.
Mother so gentle and kind and true.
I ---- Love ---- You!

This morning we had to get up at 5:30 to be to my surgery at St. Marks Hospital in Salt Lake by 7:00.  All morning this song above kept going through my mind---- over and over and over.  I ignored it until finally I took the time to  recall the words and wondered why did this song come into my mind  so early in the morning? We only sing this song on Mother's Day. 

 On the way to the hospital, I figured it out.  My mom planted that song in my mind. I know it!  It was her way to let me know that she was with me today.  I am sure of it.  It brought some tender tears realizing the creative way she let me know she was following me today.  Thanks Mom!

Date set for hospital procedure.

My first procedure will be November 3rd at St. Marks.  I will be there most of the day.  Yay.  Can't wait to get it over.

My Surgical plan. Feelings of Peace

Yesterday I had felt was going to be such a scarey day for me.  I was meeting with two important doctors that would be in my life and Kim had to work.  I was going to have to meet with them alone.  I don't like alone in this situation.  I ended up having my sister and daughter come with me.

The night before these appointments, Kim gave me a blessing of comfort and blessed these new doctors to know what to do for me.  He asked for guardian angels to be with me also.  All of the above happened.  I have never felt so at peace.

The first doctor I visited, couldn't hardly believe my liver cancer.  He had never seen it like this before, (reruns from 2 1/2 years ago listening to doctors talk about my cancer). He said he had three plans.  After explaining them all, I asked him which one he thought would work best for me.  Here is the plan:

It is called radioembolization.  They will go through my groin with a catheter with an exact amount of radioactive beads that will go inside each liver lesion and zap them.  I responded SO PERFECTLY to radiation on those three tumors, that they want to hit these lesions inside the liver with radiation also.  It will take two trips to St. Marks Hospital in Salt Lake.  There is not that bad of side effects I don't think.  Nausea  and some bleeding after the procedure and feeling very tired and lethargic for several weeks.  (Oh yay.  Just in time for the holidays to not have energy.  Oh well, so be it). THATS IT! There was no horrible bomb dropped about scarey side effects.  My sister was with me and we both felt so positive and peaceful about the plan.  It seemed so obvious!  He said it would be a couple of weeks before we start.  It sounded quite intricate.  I am excited to get going.

A few hours later, I met for the first time with my new oncologist.  When he walked into the room, and knew everything about me starting at the on sought of my cancer, I was impressed.  The biggest plus was when I told him about the surgery that the first doctor thought would work for me.  He got a smile and said that he was on board 100%.  That was exactly his thoughts.  Hallelujah!  Both doctors agreed on what should be done.  I felt that peace again and I knew I was being blessed. I felt so happy  and comforted all day long.  It was an exceptional day.  Now I just hope for a good Endoscopy report tomorrow. Then I can relax for a couple of weeks.

A HUGE change in my cancer.

Well, I went to see Dr. Fisher today, my Radiation Oncologist. There was good news, but bad news also.

Good News:  My three tumors have shrunk to the size of raisins.  They are essentially "No More".! The radiation did a number on those babies!!  Yea! Such good news.

Bad News:  Those three tumors (raisins now) have always been outside my liver, which has always been soooooooo unusual.  I have been a puzzling case right from the get go because the cancer was NOT IN my liver.

Well, now it is........................................
And it is very fast growing.........................

Since my last CT scan, where it didn't show any lesions in my liver, it has only been 4-5 months.  Now it shows 3.  One is two inches and the other two are 1 1/2 inches each!!  That is FAST GROWING!  So the tumors are gone but fast growing lesions are in my liver.  Dr. Fisher wanted to call a few oncologists and get their opinions on what course to take with me. 

REMEMBER MY ONCOLOGIST THE FIRST TIME I FOUND OUT I HAD CANCER? (Go back and read the very first of my blog if you don't know about him)  Well get this!!!!!  He hasn't changed any!!! Dr. Fisher called him to get his opinion on what he would do with my currant situation.  This is what he said:

" I would give your patient strong pain medication and call Hospice for her".  SERIOUSLY?  I DON'T EVEN LOOK SICK YET!  HOSPICE?  I am sorry to say this but HE IS A JERK!!!

(Calming down my blood pressure).  Dr. Fisher didn't believe that and said that he felt there was some other things we can do. It is called Intervention Radiation.  A specialty radiation. To try to go inside me and cut off the blood supply to the three lesions in my liver.  I kept getting hugs from the doctor and nurse in his office, so I knew that what he was telling me was NOT what I wanted to hear.

Dr. Fisher said that he was not going to give me a timeline that I have left in my life.  I had already super ceded time lines before and would probably continue to do it again.

Well, for the next hour we discussed different doctors.  I am going to get a new oncologist, as bad as I don't want to.  She still hasn't come back to work, 9 months later from her stroke.  So he got me an appointment with the other oncologist that is in her office.  They have all of my files. 

Then I got an appointment for the surgeon who would zap the lesions in my liver, to have a consultation.  Then I have some thickening from the CT scan in my esophagus.  I have an appointment to have an EGD.  All of these are new doctors and I don't like NEW.  I guess I bite the bullet and buck up.

The day after this appointment, I think I was in despair.  I didn't get dressed.  I laid around all day and was in a dark hole.  I gave myself the day to contemplate my new diagnosis, and get over my sadness.  The next day, and since then I have been fine again.  I needed to mourn a day.  My appointments will take place within 2 days.  They are trying to get me taken care of ASAP.  Crappy Cancer.

I want my mommy!

With all of the pain I have been having in my right side by the tumors, I decided to call and find out when my next CT scan was planned for.  I was told it would be the first part of November.  I told her how I had been feeling and she said that we ought to do it ASAP.  Well, yesterday I had a CT scan.  Something unusual happened this time.  I have had so many CT's,  that it is 'old hat' now for me to go have it.  I always have the same lady do it and her and I have gotten to be friends.  I just love her.  Well, I went in on the bed you lie on and she put the IV in and said she would be back in a couple of minutes.  All of a sudden, I wanted my mom.  I wanted her there with me. I was just like a little child that wanted their mommy.  I didn't want to be alone.  And the tears just leaked out of my eyes down my cheeks and into my hair.  I don't know what came over me.  That hadn't happened before. When she came back in, she saw my tears and asked me if I was ok?  I told her yes.  She handed me a tissue and commented that she hadn't seen me react like that before.  I told her I hadn't.  Then I thought to myself, that because I had seen her so many times doing this, that she was my comfort.  She was my surrogate mother at my CT scan.  (There was no way that I was going to tell her that though). Anyway, my tears streamed down into my hair through the whole scan, and when she came back in, she said that I was going to make her cry.  When I talked to Kim about it, he thought that maybe my mom was there was why I felt like that.  I don't know if she was or not.  It would have been great if she was though.

I will know my results next week when I have my appointment.  Geeze, I hate cancer!

End of Summer. Loving Autumn

Summer is over, and I now am in my favorite time of year.  Autumn!  Ahhh.  I love the smell and sites of Autumn and especially the temperature. 

This past summer has been very quiet with my cancer.  After having the radiation, things improved remarkably.  However, I feel that maybe bad stuff is going on again.  I am having pain more than I would like in the area of the tumors again.  Next CT scan will tell if that is true or not.

I still feel very tired each day.  If I go lie down, even if I don't go to sleep, it helps me so much to carry on the rest of the day.  I guess it is still the radiation that has caused this tiredness.  But if that is a symptom, I'll take it.  I don't mind having to have a rest most days.

Thank you to all of you to check on this blog.  I haven't had much to say as of late, but that is good for me.  It means my life has been quite normal. 

My heart really goes out to my oncologist who is still out from working since her stroke.  I so hope she comes back.  I miss her and will very much miss her if I don't see her again.