Hugs from Heaven

I got a giant hug in the mail today. I got home and there was a package on my front door step. I opened it and it looked familiar. I could still make out a faint design in black.   started reading the letter then I had to stop. Dan came in the room and he sat down and I read it out loud to him. We both cried. It was truly a hug from heaven.
Thank you Aunt Judy. ( yes it is a God thing )

My aunt has a life long friend name Jan. I send her my blog and she reads it to my aunt Judy.

My aunt Judy sent me a package with a letter in it. I want to put a portion of her letter to me in this blog.

" I don't know all the time line for this BUT I must tell you what God showed me: I was so cold my butt and legs were really cold , so I got to thinking what I had to wear that would be warm and cover my behind. I mentally went Thur my inventory then I remembered this cozy shirt your Mom gave me a long time ago. She and I always got so depressed when Nov rolled around. She knew I always fight the winter/ Nov blahs by waring RED. I used to ware red lipstick, red nail polish, red sweatshirts and even red boots ( when I was young ) Any way I went and got it out of the drawer and brought it out here to the living room, intending to wear it. When GODs holy spirit said ( in my head)" not you, that is for Crissy. Just as sure as I am sitting here at the big table, by the big windows His voice. I knew that voice I have heard it many times in my life. There is no doubt because at that time of the day & all of this was before Jan had gotten home and called & read your blog to me. Of course now I know HE told me those words.

Darline, when you are cold warn out and physilogically drained , put this on and know in your heart it is hugs , loves those shared special times between you and your Mom. You are so precious to your parents, as their baby girl, and you are even more precious yo your heavenly father. Feel all their arms around you holding you in their eternal love.
Little did your Mom or I know that this cozy shirt ( she wore in a pic with your Dad) would one day be a hug from heaven to you our dear Crissy. 

Ok now you can see why we cryed.  I will ware this shirt and feel close to my Aunt Judy. My Mom and Dad and my heavenly father.
Thank you Aunt Judy for the amazing hug in a package. I love you
Crissr.


My spell check is not working :)

Self Grace

Rachael sent this to me. This is what gives me such strength. All of you who believe in me.
Bless you.

This is a long story.

Well we left the hotel at 7:30 Az time. 6:30 our time .,I am not a morning person. The drive is about 5 minutes from the hotel so we left very early to make sure we were not late. All the paper work said ( don't be late or we might have to reschedule). We did not want that. As we got going we ran into a MAJOR traffic jam..........I thought everyone here was retired????????
It was a very bad accident. Looked like it could have been fatal.( prayed for those involved ) I could see the mayo clinic, but it still took us until 8:30 to get there. We called them while we were slowed down once again as there was a 4 car fender bender on the bypass that they sent us on to get around the wreck . I felt like getting out and running through the little piece of desert to get there. Snakes and cactus kept me in the car.

everyone was late . Thank God.

I had my blood draw and was waiting in the waiting room and the gal in charge of the drug study came out and said they had cancelled the CT scan. They were having a problem with my insurance paying for it. That was suppose to be figured out 2 weeks ago. My insurance had just payed for one about 3-4 weeks ago. The drug trial co is suppose to pick up anything my insurance did not pay. WHAT is the problem. They asked me to go to another waiting room. I told the gal we had traveled about half way across the U.S and paid 1500 dollars that if they did not get it figured out that I would not be making the trip back. She came back about 1/2 hour later and said it was all figured out. Needless to say I was very frazzled and crying. I had my CT scan. My Echo on my heart then meet with 2 different Doctors. We did get lunch around 12:30 this was after fasting and no coffee. I will admit I had to keep working on the water works the rest of our visit. Dan cried a few times with me. We left and went and got a ice cream and was told that the area we are staying in they just found arsenic in the water. I came back and took a nap. Dan went for a walk and came back with bottled water. Ya it was a day. We go back tomorrow at 9am I will get a blood draw get my meds and 3 hours later another blood draw. I had a blood draw today then got a IV. I must say that their CT scan drink tasted like a pretty good piña colida.

Thank God tomorrow is a new day.
The new day was not so great. We woke rested and then started a confusing day allover again. I had my blood draw and then the head of the trial and the financial off came and said that that they needed to talk to Dan and I. We moved off to the side and they told us once again that our insurance was not wanting to pay for the standard of care that they had said that they would. IN looking into it a bit more. The drug study was wanting my Insurance company to pay for way more than standard of care. When we went down there it was because they had worked it all out with my insurance company and the drug maker was going to pick up the tab on everything not covered. This was not true. They were only going to cover the drug. Wish we had know this much sooner. Like several thousand dollars ago. They were trying to get it figured out. Dan and I waited from 9:30 to 1 and they called us and said that they had it all worked out that I needed to come up and take my first dose. We did this and then My Dr there wanted to talk to me off the record!!
She said that she had heard that our insurance was not going to pay for anything to do with the drug trial. I explained all that we had been through. Tears of frustration rolling down my face. She went on to explain that if I had any side effects and ended up in the hospital that I would be on the hook for that bill and she thought they could be from $100,000 to 2 million very quickly. I told her we could not take that financial risk. ( I had talked to my insurance company and they acted like they would pay for this stuff. I am not a insurance expert so I was going with that they would not)
We left after discussing a different treatment that I could have here in Salem. We had been gone about 1/2 a hour. Just enough time to really get a grip on the situation and feel good about heading home with out starting the treatments. When my phone rang. It was the financial office stating that they had worked it out with my insurance company and that they were willing to pay for everything.
Dan and I were both numb..... WHAT????????? she was saying come back and get the drugs. Dan said that he would turn right around and go back all I had to do was say the word. I could not.
I had told her I would call her back. I could not do that either. We went and ate 1/2 a dozen donuts and said lets go home.
This whole thing gave me so much peace about the care I had been getting in Salem.
She had said the same thing as the DR from the Mayo clinic and I had never had the problems. I felt like I could go every 3 weeks and get the run around each time. I would start feeling sick and have to do that all day flights and hotels and rental cars and the run around again. It then sounded very overwhelming. Staying in Salem sounds so much more peaceful. Near my home, my family and my support system.
It was a hard lesson to learn, but I believe it was to bring me back to Salem and know beyond a shadow of a doubt that this was where I was suppose to be for my treatments.
I will keep in contact with the Dr from the mayo clinic. I will probably go in about 6 months and see her. Just not ready to do it right away.

I meet with DR Tiffany today at 2:30 to go over my new treatment. I am so prepared to do this. I guess as prepared as one can be.
I think it is a IV infusion , and all that comes along with that . Yes I should be bald again. It is easy as long as Dan keeps telling me how beautiful I am without hair.

Starting treatment

I don't know how to explain how you can be so excited to start doing something when you are dreading it even more. It is such opposite feelings about the same event. Hard to make spence about it. But this is how I am feeling about it.
Dan and I are flying to Scottsdale on Tuesday. I have Dr appointments from 8-2 on Wednesday. Then  Thursday at 9 more testing . Then I will start my chemo pills then another blood test 3 hours later. I won't lose my hair, but it comes with all the other glorious side effects.  Headed home on Friday.

Please say a prayer for my  niece , she is having a double mastectomy on Friday. YES , she is BRCA1 positive also.
 I will post after we get home and let you know how it went. Going to Scottsdale every 3 weeks.

Information, fun and more fun

The mayo Clinic in Scottsdale Arizona. It was so great to be able to come here and get a second opinion. We meet with the DR Nina Karlin. We both liked her right off and it was not just because her name was Nina ( what my grand kids call me ). She was just so with it. We left with her having my sternum biopsy slid and my lung biopsy slide being sent to the Mayo clinic in Rochester. She wants them all run again and check for Her 2 also. I guess one of mine came back once her2 positive. This was the first we had heard that. I have had so many different diagnosis on my tumors. It is important to get it right as this will dictate the type of treatment that is best for my tumors. The majority it has come back a triple negative. I believe it will be confirmed once again.
I am having a CT scan tomorrow to update that and see what is going on in my lungs. I cant feel anything so I cant say of I think that more is going one. Once Dr Karlin has this information she will give her opinion on what form of treatment I should have. She did say that I should start treatment and not wait to do so.

Dan and I meet today with a DR at OHSU that is getting ready to start a drug study for triple negative  breast cancer. He thinks I would make a good candidate for this. It would be in the form of 2 different pills ( YES) no port. He said it has some side effects that come about the first 3 months and then they go away.compared to other drugs that get worse over time. They have found that one of the pills goes after the tumor markers and when it would change to become resistant the other pill does not allow the second morphing. It sure sounded good to Dan and I. I would go up the first couple of weeks a couple of times a week and then it would get to about every 2 weeks. The DR said it has been showing some great strides.

I am very thankful to all the Dr's helping me to make the best decision for me.
Dr Tiffany for encouraging me to look into other options and get the second opinion.
Dr Karlin for looking into my tumors more
Dr Martin for being so excited about the new study
Dr Gordon for his late night calls to just check on me and see how I am doing.
Dr Leonard for giving me back my boobs. He is an amazing Plastic surgeon.
If I ever get the guts up I will post a pic of my new boobs on this site.

Dr Vanderburg for always helping me to seek more tests when everyone said it is all good.

Dan and I had a wonderful time in AZ. We decided to make it a mini vacation and we drove to Sedona. It was beyond beautiful.

So many beautiful rock formations in so many colors

When I took this picture and walked back to the car. My dress hem was full of burs from some grass that was growing next to this cactus. Dan had to help me pull them off my dress so I could get in the car.

We finished off the evening with the BEST Italian food ever. The owner wrote this book on Italian cooking. I usually come home with a new pair of earrings as my vacation memento. This time it was her cook book.

 

 

I will have to post later what the decisions are that we come to after all this new news. What I do know is that my trust in the Lord has not wavered. I know that he is in charge and will continue to guide Dan and I on this journey of life together. This is not something I am doing on my own. Dan is my constant companion, My strength and so much more. He sends me scriptures on my phone almost every day. He is my encourager.  I love this man

confusion to peace

Jenn Johnson - Come to Me

http://youtu.be/sjut9VTv4fw
 

 

This a song that Nydrie Edwards posted today on her facebook.  Thanks Nydrie.

 

I did not know what to write about today, but felt like putting my thoughts down on paper. I guess that today I am a little confused and not sure how I should feel. So what I really need today is just peace in my mind and my heart.

 

I got a call from the Mayo clinic today stating that they did more stains on my tumor and that they had 2 pathologists read it and they both agreed that it was a triple negative cancer.

I have had so many different diagnosis and with each one your cancer is treated a little different.

1st  triple negative

2nd  progesterone positive ( slightly)

3rd estrogen receptor positive ( slightly )

4th triple negative By 2 pathologists.

 

SOOO, the study I was going to do at the Mayo clinic is now being changed back to the original one that I was going to go there for. I have been on some meds that they will probably take me off of with this diagnosis. I am a little bummed because that means that I have been having basically no treatment for about 5 weeks. Because the drug I have been on is for estrogen receptor positive cancer.

 

I know that they will get it all worked out, but truly a bit tearful. I m feeling a bit overwhelmed today. Tomorrow is a new day.

 

New day today: I think I figured out what I was feeling. I have been taking Letrozol for about 5-6 weeks. I was told there was a 1% chance it would slow down my cancer ,then I was told that there was a 10% chance it would slow down my cancer. Then yesterday I was told that it would not do anything. I think that even though the numbers were low I was still very hopeful and yesterday I lost my hope for that drug and had to be honest with my self that I was REALLY hoping that it was going to do something. That I would go back in for a CT scan and they would say wow it is smaller or wow it did not change at all.  These are the bumpy roads I have talked about. Now that I know what I am feeling I can organize it , look at it, analyze it and get over it and move on. :)

 

The Lord is my Old Faithfull / is that ok to say

Dan and I have had a blast doing our road trip to Yellowstone Park. We planned to do this about 3 years ago then I got  sick and we put it off.
This time we planned it and I got sick and we said no better time then the present. So off we went we took our little Rosebud trailer and we packed her full of great things to much on, comfortable cloths and our computers :) Yes we love our computers. Some of you take your pets on your vacations we take our computers. Much neater, nothing to feed and nothing to clean up after.

I went to Yellowstone park with my Grand Parents and my Parents when I was 7 or 8. There is a lake called Jenny Lake at the base of the Grand Tetons ( GRAND for a reason ). I would tell Dan about it every once in a while. I really was impressed as a child how beautiful that lake was. So we had to make a trip to the lake.

 We stayed a couple of Nights in Jackson Wyoming and looked that area over. For me I would have to say the part of the trip that had the most impact on my was the little church in the Tetons. I have also told Dan about this church for years and the view it had out its little window. How you could feel the Lord there. Well It has not changed. We got there and it looked exactly as I had remembered it. Walking up there is a big bell. I rang that bell and it echoed all around us. .     

We went inside and again it was just like I remembered except one thing. This time the presence of the Lord was more than I have ever felt any where ever.

I wanted to talk about what I was feeling, but could only cry. I felt like the Lord was telling me again to ask him for a healing, from my cancer and from my pain. It felt like I had the biggest lump in my throat and I could not speak so only tears came. Finally I told Dan through choking tears that I felt like I was to pray for a healing. He prayed for me and I cryed some more.

 

We walked around and looked at the rest of the building that they had there, but I felt like I had just been covered in the Lords presence like a blanked. I felt it the rest of the day.

 

I have had what would in the begging a small spot under my right breast on a rib ( it felt like ) that would just hurt every now and then. Then it became more and more. Then I had surgery about 3 weeks ago to get rid so some scar tissue that was making things look bad and hurt. When I woke up this spot was much worse. It hurt the most. Over the days following the surgery it seemed to be getting a bit better. When we got on our trip it went into hyper drive and just was so painful. I was taking something for the pain every 4 hours. My radiation Doctor said it could have been caused by the radiation. All I knew was that I wanted it gone.

 

We still walked through all the majestic beauty of the Yellowstone Park and kept saying how amazing the Lord was for creating all of it. We saw so much natural beauty. If you ever get the chance to go it should be on everyone bucket list.

We came across a whole heard of Bison. Dan was reading on a sign about them when 2 of them started a grunting and head butting each other just on the other side of the ( flimsy ) sign . Everyone stepped back and Dan stood still taking pictures.

We had such a wonderful time. It was just as I imagined it would be.

But wait

This is not the end of my story. When we got back to our home in Bend. Again I felt like I was suppose to ask the Lord to heal me. So I prayed that he would. I woke up at about 7am the next morning and I still had that dang pain just as bad as ever. I went back to bed and woke up at 8:30 and yes it was GONE. I am praising the Lord for that.

 

 I believe that he wants us to keep bring our issues to him. His word says to come to his throne continually. So I am not bugging him I am only doing what he has asked of me. and Yes I woke up again today with no pain and had to share it. Thank you JESUS

P.S It was our 30th wedding anniversary on August 21st. The Lord gave me the answer to my prayers over 30 years ago and he is still answering them.

  

 

The whirl wind

Wow, where do I begin. Life was such a whirl wind for about 2 weeks. I am feeling grounded again. Maybe it is because I had surgery and had to slow down. I feel like my feet are back on the ground. Or should I say off the bed.

ok, lets start with the surgery. I was thinking a small surgery life the left boob a little more and get all the scar tissue out of the right one caused by the radiation. That sounds easy right?

Well now I have a drain coming out of my right side and left side and way more pain than I thought. It came in between the mastectomy and the getting of my permanent implants for a pain scale. I must say though that yesterday seemed to be a turning point and now if I could just get these drains out and and the elastic band that is around the top of my boobs gone I would feel way better. I can feel the drain in my right side right under my breast laying on my rib I think.

The day Dan and I were told that I should have about 2 years until the tumors in my lungs became symptomatic, then 3 years of treatments and anything after that would be a bonus. There is no other thing to say then. Are you kidding me. I am going to die of cancer. That is a hard one to wrap your brain around. I have always kind of thought I would, but even that is no guarantee. I could be hit by a bolt of lightening, fall in the shower, (chock on a chicken bone ,this one is more likely )

Dan and I both went through bouts of crying and sadness. We took a few days off from the world and we were together. It is a togetherness like no other. When you feel like you are going to be torn from the one you love so much. That nothing else matters. You can not put into words enough how heavy your heart feels. All the things that you think you will not be there for. I want to grow old with Dan. I want to be the one to get his slippers and help him put them on his feet. I want to cuddle into the curve of his back and keep his old bones warm. I want to be the one that goes to the store and gets his favorite foods and buy his undies and socks. This is what I want to do. I want to look at him and see the young man I married almost 30 years ago. I still see him everyday.

Then I realized that maybe we have been given a gift. KNOWLEDGE. Time is more precious than ever don't waste it.

So, we are getting our home that we have loved for about 11 years on the market and looking to move to a single story home. Little to no yard and probably brand new ( no work for Dan on weekends) We are going to play on the weekends and spend time with the people that we love. No more time on the yard, plumbing. caulking. whatever. Hopeful we will have simplified our daily life.

In the midst of our whirl wind Dan and I sat down and poured our hearts out to what what was going through our minds.  We did not hold back for fear of making the other person more afraid. I told him the thing that I was struggling with the most was that I felt like I was losing everyone, EVERYONE . At some point I would be gone and I was going to miss out on all that my family was doing and growing. My family means the world to me, they are my life's reward, my reason for being.

Dan said that at first he would be in shock and go to work and come home and pretend I was at work. Then he would be the old man that shows up to the holidays alone. That his home would never be home again without me here. For me looking at it now his walk through this will be much harder than mine. For this I am so sorry for. Letting each other know what was running around in our minds like crazy little devils, started the process of getting grounded again.  

We were both going through our own whirl winds and needed to say a few thing things in order to get our feet on the ground. Then the peace of Jesus came in like a flood, over flowing.

I thought about going to heaven and seeing all the people that I love there. My mom and Dad. Wow I miss them. I am sure that they have found out some great things about heaven that they can point out to me. I was thinking how people think that you are floating in the sky with a harp. NO that's not it. I am going to be dinning with my loved ones and the King of king the Lord of Lords. My guess is that there will be loads of laughter and joking. I love to do that. "Laughter doeth good like a medicine".

No I think heaven is going to put Earth to shame . no sadness, no tears, no sickness. It is going to be amazing.  I will be thinking .... I cant wait for them to get here to see what THEY were missing.

For now I am going to put as much life in my life that I can. Love my family and I am going to live REALLY live my life.