Every thing H

New home , new hair cut. well that is it for the H's.

I want to start this with saying that my CT scan showed that 2 of the very small tumors in my lungs got smaller and one stayed the same from just 2 chemo treatments. When I am all healed up from my surgery I can start chemo with a renewed vigor knowing that what is am going through is worth it.

My surgery went well I have a healthy right boob again and a giant scar down my back that looks like a crescent moon. If I were younger I would probably try to hide it with a tattoo of guess what ( a crescent moon )....... but since I cant see it and my amazing husbands rubs lotion on it for me and tells me how beautiful I am. Well It is going to just stay as it is.

Dan and his brother Shawn have both taken on with much vigor getting this home done. Shawn must have inherited the loving heart that Dan did as they both want to get it done for me. Shawn and Dan  talk each night on what the next plan will be and then Shawn is here first thing in the morning helping to get our home in order. What I love the most about it is listening to the two of them having such a great time together. This will be good memories for them. laughing and singing to 70' music. and making everything seem funny. ( no drugs involved).

The sun is peeking through the clouds and I am just feeling so blessed. I gave myself a long sponge bath this morning. I have a antibiotic pump hooked into my port for a week or so more. It goes off twice a day to make sure that I don't get any infections from this last round.

Today I feel so positive about my future. I heard a servied this morning about not getting what you deserve. It really struck a cord with me. I have been asking the Lord to heal me and really thinking that he is going to do it ( most of the time) then I think ... I know people who were such better Christians that I am and he did not save their lives from cancer, he let them go home early. Surely he wont save mine either.
Then the service said that the Lord does not give us what we deserve, but what his will for us is regardless. there is no scale of 1-10 of how good a Christian we were our whole loves. If that were the case I would have been condemned and burned years ago for the life I lead. Then his sweet spirit comes in and says that it is not by my performance, but his love for me his GRACE. WOW!!! That is so big. I need to hold onto it every day. I am pretty good at that, but be reminded and in turn ran to him again today and ask once again to spare my life and take my cancer away.

So this explains the H for house
The H for hair is that mine is thinning so I went to my hair gal Heather and had her take it down to the nubbins. So I am back to my real short hair. That was if it just gets really thin the thin spots wont be so noticeable. If it all comes out it will be easier also.
ok. H can be for Heather also :)

The scoup

Well here I am again getting ready for another surgery. I usually call everyone and tell them, but this is starting to get really old.
So I have not called everyone. I am going to have surgery on Friday. I will be in be in the hospital for a few days. You might be thinking ... wow she would do anything to get out of living at the hotel :) No I would not do this.

I had 36 radiation treatments on my right breast side back in Nov, Dec, Jan of last year. I had another breast surgery on August 4th of 2012. It has never seemed to really be right compared to the other surgery's and how much I loved my boobs. I did not love this new one. Lately it was getting a little more misshapen. I made appointment to see my plastic surgeon on the 20.
I was suppose to have a Chemo treatment on Monday the 7th, but the evening before I had what seemed to be a leak in my right boob. Kathi and I went to see my plastic surgeon on Monday morning to make sure it was ok to have Chemo that I was not getting a infection or something. Well it was the or something.
My implant was pushing to pop through my radiated think skin and had sprung a leak.
The Dr felt like it was something that need to have some kine of urgent attention. He talked with my oncologist and the two of them agreed no Chemo that day for me and not for 6 weeks after my surgery. I am going to have to have them take some skin and muscle from the right side of my back and pull it around to the front to give me  some strength in my skin. They will take the implant out and clean it all up and then put in a implant also.
I will admit I was pretty glad not to have to have chemo on Monday. We should be moved in and all comfortable in our new place long before I have to have another treatment.
I did have to have a CT scan on Monday for my oncologist. She wanted to look and see what the treatment had been doing or not doing........ I am voting doing.
_______________________________________________________________________
I have a cousin whose daughter is getting married this week in Pendleton. I have just know FOREVER  that I would be at her wedding. It was a given.
Well I knew that I would not make it because of the chemo. I let them know that I would not make it.
I just really really want them to know how much their family means to our family.
They have always been so supportive to my whole family. From my parents down.
We love you Mark, Marilyn and family. I pray that Shakina's wedding is blessed by the presence of the Lord. I also pray that you would feel the love coming from your Salem family. Many tears have been shed about not being able to be at the wedding.

round 3 of chemo -1 new treatment down

 

Well I did my first treatment a week ago on Monday. It was easy to go in and get it. It took about 4 hours all together.

 

I thought I was breezing through it and on the 3rd day I was ready to go shopping. Then at about 11:30 I sat down and cryed and needed to go home. Overcome by emotions (prednisone) I went home and slept. Then each day seemed worse. I went in yesterday and they said that I had cough a cold on top of the chemo. Bad cough. I am taking strong antibiotics and hope to keep this reined in. My low blood count days start today and for about the next 4 days. Needless to say I am staying home and away from anyone sick. Even though I was passing mine around when I thought it was from the chemo.

Our house is all packed up and it will get loaded up o Saturday. We move to the hotel on Saturday and should be able to take possession of our new place on the 12 or 13th.

Then we will have about 2-3 weeks of work and then we can move in. We still wont have a kitchen in, but to just get settled into our new place will be great. The new kitchen will be in in about 6 weeks from closing. I will post before and after pics. Dan and I are building and fluffing a very comfortable nest for the two of us to rest in. We think that we will have more time to be with our family and friends. Not having a yard or a big home to always consume our time and energy. It is better spent else where.

 

 

 

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