Happy New Year. Ouch! What is going on?

Something is going on inside my body that is not good as of lately.  I am uncomfortable a lot.  Around where my tumors are, are quite uncomfortable when I move a certain way.  I feel bloated a lot, and when I do, I waddle like I am pregnant .  I can barely zip up my coat when I feel like this.  It has felt like this most of the holidays. I get a reprieve a half a day occasionally, but mostly it isn't good.  I hate to say this, but I feel my tumors are growing and they are crowded in there.  I try to get a comfortable position either standing/ sitting/ laying and it is hard to find it.  I get my CT scan on January 15th and I think it is the 20th when I see her and she tells me about it.  I know something is different negatively.  I just have to hang in there three more weeks to find out. It makes me sad.
Chin up.  I can do hard things!

Happy New Year.  Good bye 2014.  It was a good year.

Going 'wigless' to church for the first time.

AHHHH.  I just finished my post and it somehow deleted!!!  (Grumpy) Starting Over :(

OK, yesterday was a very emotional day for me.  It is a day that I have dreaded for over a year.  It is the day that I would go to church without a wig!!!  Maybe those of you reading this might think that is silly.  For me...NOT!!!  It has been something deep inside me that I have struggled, with the thought of the ward seeing me with my extra curly hair that has no rhyme or reason....It is just there. (Did I say,CURLY?) I have struggled inside with my primary class seeing my real hair.  They actually were really cute.  Especially the girls.  They are the 12 year olds who graduated from primary.

I started crying about doing this just before we got in the car, and I couldn't stop the flood gates no matter what Kim said to tell me I looked very nice.  I got to Relief Society, and went to the back row, corner, so I could hide.  I didn't hide long, as many of my friends came back to comment so kindly. Thank you to all of you who were so kind and helped me through my traumatic first time.  I have gone to a few places already wigless, but for some reason this was a huge step for me.  I guess I was getting ready to start the new year with the 'real' me.  I like the 'wig' me so much better but my hair is getting long enough to not hide underneath as well.

Anyway, another milestone to cross, and I did it. 

Happy day at her office. A day to share my thoughts with my Doctor

I really haven't been ignoring my blog.  I would never purposely do that.  This is my story on my cancer road, and it is a beautiful ride right now, but not a lot is happening which is incredible!

I saw my oncologist last week.  I had "Lucy" flushed and blood drawn through her.  Everything looked good. I feel good and I don't feel I have anything wrong with me, especially any type of cancer.  I only still have itching, and we addressed it.  I now am tripling my medication.   She asked me if it made me feel sedated.  I have gotten sleepy in the afternoon after I doubled it but didn't realized it was that medication.

After we addressed the itching, I told her I needed to talk to her.  We looked each other in the eyes and I told her that God sent her to me and me to her.  She smiled her wonderful smile that I have so grown to love.  She didn't quite know what to say. I think it made her happy.  I started to cry, and with a lump in my throat I couldn't say anything more.  Kim finished what I had begun and told her that since it was a month of Thanksgiving, that I had wanted to thank her for everything she had done for me.  I will have a CT scan again between Christmas and New Years is what she said.  Then I will see her January 6th!

My first day tripling my medication for itching, I felt like a zombie.  I really felt sedated and like I couldn't drive or anything.  I was tripling it three times a day.  I realized that I can't triple it at work or away from home.

On the way home from her office, I recalled the first several weeks into my cancer and remembered how sick I used to get and how sometimes I would be right down in bed a few hours or half a day.  I remembered the many things it was doing to me to make me so uncomfortable.  Now....I feel great!  I asked Kim  what has happened that I don't ever feel like that anymore?  I feel totally normal.  He said simply, " it's all the prayers given for you". I smiled and realized how correct he was and how my life has changed for the better.  If my cancer is playing havoc in me, I sure don't feel it.  I sure hope it isn't doing that.

I went and got a foot zoning Friday, and when I went in, one of the first questions she asked me was if I was still taking chemo.  I told her no, not for two months.  She said she could tell I wasn't.  I asked her how and she said that I didn't have a black color surrounding me that chemo brings.  Wow.  I didn't know that.

Well, I am playing the waiting game till the end of the year, and loving life and feeling totally normal.   Thank you again to you all for caring about me!  I love you all.

Happy Thanksgiving!

20,000 views, Itching, swollen ankles and hair growing back, finally.

Well, this blog just went over 20,000 views!!!  I can't comprehend that at all.  I don't get it, but here I go with another post.

So far, doubling up with my med for itching, has worked well, but I still itch enough that I have scratch marks all over my body still.  Some pretty bad ones on my back.  I will have to talk to her next time I see her about this. 

By doubling my medication for itching, it didn't come with out a cost.  My ankles balloon up and my knees and legs (not as bad as my ankles) also get swollen.  I am quite bothered by it and have to keep putting my legs up to help them go down a little.  In the mornings they are fine.  My doctor gave me a water pill and potassium to take to help the swelling to go down which really works good...

My body hair is coming back!  I am getting eyebrows back and eyelashes and with that comes leg hair and etc.  (I didn't miss not having the rest).  With that said, that must mean that where I lost head hair, it must be growing back also, so hopefully I will have my  thick head of hair back.  Unfortunately it isn't the same hair I lost, since it is soooooooo curly.  I mean corkscrew curly. and absolutely no way to fix it that I know of except just gel it and let it do it's thing.  But I do have hair.  I am thankful for not being bald anymore.

I am so happy for the next two Holiday months!!  Yay!  I am pretty much done Christmas shopping.  I want to wrap presents!!

A bouquet of flowers at the Doctors Office?...SWEET!

How many times have you ever gone to a Doctor, of any kind, and come home with a bouquet of flowers?  Well I never have until yesterday at my Oncologists office.  I saw another lady walk past our room we were waiting in, with a bouquet also.  How awesome was that?

Well, my appointment with her was ***** 5 stars!  Life just keeps getting sweeter and sweeter with my cancer. (I now have none of the side effects of the chemo in my system left, and I feel fantastic.)  She really encouraged me in how good my blood tests were, how healthy I looked, and even how when she pushed this time on my tumors, she said that I am able to withstand more pressure than normal without me wincing.  Guess what I said to her as I looked into her eyes on the patient table?  I told her the reason I feel and look so good is because I don't have cancer! She looked at me and grinned from ear to ear, and emphatically said, "O-K"!  Then I got the flowers just before I left.

I have been praying umpteen prayers about my itching.  I have also had multiple priesthood blessings in the middle of the night from such bad itching about 2:00 in the morning, and no sleep yet.  I believe my doctor was inspired from God to tell me something so simple:
  "I want you to double up your itch medication, 3 times a day and see if that helps", is what she suggested!  How simple of a fix would that be if it helps? Why has that not been thought of weeks upon weeks ago? ( Because I needed some refining of some sort to go through it I think.)

  I am one day into it, and I so far have had the best day and evening with hardly any itching!!!!  A huge difference!!!  I need to see if after one day it was just a fluke, or is it going to be divine information sent to my doctor!!!! I believe it is. 

Kim and I left her office in such high spirits!!  I was flying again, just like last time.  She said I had to be on the harmone blocker for 3 months before we get another CT scan.  So that would put it at the first of the year. I am thinking good things will happen in that scan...."I gotta have FAITH"!

Thanks again for prayers from so many of you....thank you...thank you!

My dark, "supposedly-not-cool" hair, and tender moment with Capri.

********************************************************************

A few days ago I got my hair colored a darker color than my normal color. The next morning my granddaughter came over and saw my hair. She is 6 years old.  Here is the exchange we had:

Ava:  Grammy, why is your hair so dark?

Me:  I went to the salon yesterday and I had it colored.

Ava:  Let me go get you a hat.

That sure made me laugh inside.  It must not be a color she liked.  She made me wear the hat all day also.
*************************************************************************

I had a sweet moment of feeling close to my Father In Heaven yesterday. I seem to have a lot of these lately.  I will share this one:

I was tending grandchildren again yesterday. My granddaughter Capri, was born on my birthday and just turned one year old. She is my youngest grandchild. 

I was holding her and she looked up in my eyes and smiled that mischievious little "Capri" smile at me and laid on my shoulder with her little grin. I had such a feeling of love from my Father in Heaven that he was giving me time to get to know that little soul.  That He was giving me time for her to love me and for me to love her.  There was a time that I didn't know if I would get to know her very well.  But we had a moment together yesterday, and it filled me with thanks to my God for allowing me that sweet love filled moment.  Tender mercies!

A potential help from a Hormone Blocker. Seriously?

My Doctor appointment today made my head swim!  I couldn't believe what she was telling me.

On the ride to her office, I told Kim that if I had one wish, (but I knew it would not come true) it would be to be able to take chemo pills again and not have to have IV chemo, which she pretty much said was my alternative when Nexivar didn't work.

Since I saw her last, she took a sample of my last years biopsy and it was sent to Phoenix.  With my personal cell DNA and my personal proteins and with the biopsy from the tumor, they profiled me.  The information they sent back had 2 lists. A short list of treatments that would most likely NOT work for my cancer and body makeup.  Then there was a longer list of ways of treating MY cancer!  I do have hepatoma cancer of the liver.  I have known that over a year ago. That kind of cancer will work differently in different people.

Well, already, I liked the fact that my list of things that could possibly work for me, was longer that the ones that wouldn't work.  She seemed pleased about that too.

Drumroll********  My body make-up seems to be compatible with hormone blockers to fight cancer!  There are several different kinds I could try. All of them being an oral pill. No chemo at all. Just the hormone blocker. I couldn't comprehend that I was hearing this right!  I just had never heard of this.  She said breast cancer patients usually take this for five years after they have had breast cancer and been on chemo/radiation. I was dumbfounded.  I had never heard of this.  Taking a non-chemo prescription just from the pharmacy, a $10.00  90 day bottle was all I had to get.  Take one a day.  I kept saying to her, "Seriously?  That's it?"

Like I mentioned before, if I had a wish, I hoped I could take my chemo in pill form again.  Not only was I getting my wish, but it wasn't even chemo that I would be taking!  This particular hormone blocker can make me feel really achy over time.  The other hormone blockers on the list had harsher side effects.  But this one we decided was a place to start anyway. I couldn't get the smile off my face.  I couldn't believe how I had just been blessed.  Hugely blessed! I HAD OPTIONS! AWESOME OPTIONS!  If any of you reading this, do not believe in miracles, this was a small miracle that was for me.  When Nexivar didn't work, I didn't have many options that would work well.  But this scientific testing, took me to a whole new level.  

We talked about how maybe this hormone blocker might not work.  Then, we try another one.  Keep doing this till we get to the list on my profile of chemo drugs that may work.  

The best part of this all she said:  "You feel good. You are not a sick cancer patient.  Any chemo IV drug will potentially make you sick with toxins from side effects.  Why do that when you feel just fine?" I loved her reasoning. So this hormone blocker could make me achy after time.  That is it.  

I thanked and thanked her. I felt so happy that I hardly could contain myself.  When we got home from the pharmacy, I asked Kim to dance in the kitchen with me.  We danced around like two little kids. (and he thinks he can't dance!!! ) 

Kim and I believe in all of your prayers.  I am a recipient of being blessed because of them.  I can't tell you thank you enough.  My life just took another small turn for the better. Life is good!

Itching........and more itching.......and......

I have always had itching with Nexavar. I have been off of it now about a month.  A week ago I had a new sensation of itching.  From under my skin. The first night, I fell asleep at 5:30 am.  Next night, 1:30 am.  Last night I got about 3 1/2 hours.  I called my doctor for something to help me sleep through the itching.  I got Ambien, and I can't even sleep through itching with Ambien! I am goofy after taking it and can't walk around very well, but sleep?  Not through the itching.  If anyone has ANY IDEAS..... Please share.  I am taking Atarax for itching, benedryl, Allegra, trying Lortab, prescription creams, and I have tried some other things also.  And I seem to get little electrical zaps, (is what if feels like) and it makes me jump. I itch during the day, but nothing like early evening on.  Eye lids, ears, roof of mouth, palms, soles of feet, and every other body part. Help! Is this normal?

My take on it is that toxins from Nexavar are still trying to work themselves out through my skin.  Then what do I do about it?

Itch, itch.
There's not a stitch.
Of skin that doesn't itch, itch itch.

Okay.  That's corny TL

Page views By Countries

Ok.  This blew my mind.  This is crazy..

I didn't know this existed on my blog.  I found it the other day.  It is page views by countries.  I knew there were page views, but not broken down by countries!!!!!!!!!  Get this.......

United States-------15,395
United Kingdom---943
Russia---------------283
Hong Kong---------265
China----------------146
Canada--------------114
Indonesia -----------104
Germany------------98
France---------------87
Brazil----------------73
Ireland---------------8
Phillipines ----------2
Poland---------------2

Seriously?  How do all these people know?  Why do they care about this blog?  They don't know me in all these countries.  If anyone out there wants to make a comment, I would like to know. I am truely baffled.  This blog is quite unimportant except sort of as a journal for me and to let my friends and relatives know my condition.   Somebody out there across the world cares also, for whatever reason. Thank you.  I wish I knew who you were.

Starting Path #2

My Oncologists Office;  September 9, 2014

 

 

This was a little nerve racking waiting today to see what Dr. Klein was going to have me do now that she has taken me off of Nexivar.  Last night, we prayed that she would know the direction she needed to go for me and what medication would be best for me. So..........

 

She looked at me and asked me how I felt.  I told her I feel wonderful.  All of the side effects of Nexivar are gone and I really feel fantastic.  I asked her what we were going to do now....... She rested her chin on her wrist and just quietly stared at me.  Looking right into me.  I remember thinking,

"Ok, Father in Heaven.  This is your turn now. Remember our prayer last night?  She is waiting for your answer now".

 

Then she stopped thinking and said that she didn't want to use any intravenous drugs out there for liver cancer.  They didn't work very good.  Nexivar worked best.  She said she didn't want to give me chemo that would cause toxins that would give me bad side effects and most likely wouldn't even help me.

 

She remembered how my liver cancer is different than she had ever seen.  I should have cirrhosis of the liver with hepotoma cancer of the liver and be VERY sick.  I should also have  lots of tumors in the liver.  I don't fit that scenario at all.

 

She said my tumors are more by the biliary duct going into my liver, (or was it going out?). And she wanted to check around the country looking for someone doing cancer tests on that particular place,  the biliary duct.  Then that would be fine tuned just for me.

 

All of my blood tests looked really good, especially since I was not taking Nexivar any more.  I am not sick, so she said she wants to take the time to find out something out there for me...just little ol' me! She is so awesome!!!

 

Wow......she told me to come back in 2 weeks and in the meantime, she will be checking things out, get it pre-approved by our insurance, and go for it.  I GET TWO MORE WEEKS TO FEEL GREAT!  Woo hoo. I may not be chemo sick now for my birthday!  

 

 

 

 



This Past Year on The Nexivar Path of my life.....Starting a new path in 2 days.

Wow, what a ride this has been this past Nexivar (my Chemo) year.  This is a picture of me "pre-Nexivar".  My own hair. As I look at it, it makes me sad how this drug really aged my face. :(

 

Kim and I before Cancer

This necklace is from our kids for me to wear when I got chemo, which I never had to go get it.  I just took the oral medication below. 

 

After 5 days of taking the Nexivar, this is what happened to me.  I was covered from my scalp to my feet. You can see where they inserted "Lucy", my port in the first picture

These are the letters I got in the mail when I was feeling like I wanted my mom!  The next week, all of these letters came in the mail in my mothers handwriting, talking about her cancer to her sister.  My cousin sent them to me.  These letters came 30 years after mom died.

 

Kim and I going to "Relay For Life"  The shirts they gave us.

 

After my hair falling out so bad, I got my head shaved.

 

My two sassy wigs I got for that very bald head!

 

My BFF necklace Kim gave me for Christmas.  One for him and one for me.  He still wears it.

 

The Young Women bright me this just before they went to girls camp, and I couldn't go from being sick.

 

 

There are so many more memories than this but that will suffice.  So bring on this new path of my cancer.  I am ready.  I will tell what happens when I see my oncologist in two days.   

Strike 3 and I am not out!!! A change of plans in my cancer life.

I don't quite know how to feel as I write this post, as I think I am still in a little bit of shock and sadness from my Oncologist appointment today.

I had a CT scan last week, and I really have felt really good the past couple or three months.  I wasn't too concerned about my appointment, but I guessed wrong unfortunately.

The interesting thing I think, is that Sunday, two days ago, I was to talk about having gratitude through my illness, in Relief Society.  Ironically, my life changed a bit today, from my health I said on Sunday.

When my doctor came in, I wanted to see big smiles meaning that my cancer looked good.  She had a smile, mostly I guess to see me again from 2 months ago, but then came the news.

My cancer tumors are growing. And a new one in my liver.  She gave the dimensions of how much each one grew, which I cannot remember, but it seemed like somewhat bigger.  Anyway, bad news that I wont be taking my chemo pills, (Nexivar) anymore.  It had a chance to help me, and now lost it's luster with me and is being sent to pasture. I really didn't want to hear that I would now need to begin taking my chemotherapy intervanously. No more pill form of chemo.  :(    I guess that there really was a reason why I have "Lucy" (my chemo port....I named it St. Lucia.  Lucy for short) after all. 

Strike 1:  My doctor said I most likely could lose all my hair.  Only I probably wont be shaving my thinning hair this time.  It just may all fall out. (She didn't say that.  I did.)  That was such a sad thing to hear.  I just got it colored at the salon, which I hadn't been to since a year ago.  It isn't long enough to style, so I just had it colored.  I was sooooo longing to "very soon" not having to wear a wig or hat.  But then again..... maybe I will be the exception.  (Wishful thinking).

Strike 2: She also said it may make me nauseous but that they have great medicine now for that.  I can take about anything but feeling nauseated!!  But then again..... maybe I will be the exception.  (More wishful thinking).

Strike 3:  She said I may feel quite tired!!! Really?  I want a nap now as it is every day by 12-1:00 pm.  Oh yay...I will get up in the morning at 8 and be ready for a nap by 10 just like my 11 month old granddaughter.  We can nap together!! It will not be funny if I am ready to nap with her again for her afternoon nap also!!!!  Then again....I love napping. 

My doctor said I could go off the Nexivar for the next two weeks, and mentally re-adjust my thinking for this next phase of cancer and then we will start my "Lucy" chemo.  It could be once every three weeks.  We will see.

I always knew that I was on a high wire, and that some day it wouldn't keep me up there any more.  I remember when I started Nexivar, I was so scared to know what was ahead of me.  I did it, have been there, done that.  Now this new path I am taking is scary.  What will this bring?  Hopefully not another nasty horrifying rash!

But looking at the good side, I haven't been able to get in our hot tub this past year because of the Nexivar.  I can relax in it again this Fall/Winter.  Also, I already have Lucy, so no hospital surgery to get a port, and my blood pressure medicine may not be needed any more, since Nexivar added a lot of med's for that. That would be nice.

I know that things will be just fine.  I have been teary today, but hopefully this new "path" wont be too mean to me, but if it is....BEWARE ....I WILL FIGHT BACK! 

What does a CT scan do for me?

I have high anticipation this next couple of weeks.  I haven't seen my oncologist for a couple of months, nor have I had a CT scan for 8 months.  I am doing both the next two weeks.

For those of you who don't know what a CT scan does for me, it shows where the tumors are in my body, and how big they are. A year ago, my first CT showed I had cancer tumors initially.  That was when my family doctor called us in to tell us the not so good news.  A cluster of them around my liver, but not really attached to anything inside, except a very small spot on my liver.  There was also a secondary site where a cluster had also started up, in my chest which were just pin sized.  That is why they said it is stage  four because it has spread to a different site.

The second CT was done in October, and it showed the tumors were a little larger than they were in July. Then in December, the CT showed them back to the size they had been in July.  That was great news.  The pin sized cancer cells were still pin sized.

So this CT scan on Monday will be really important for me to hear the outcome.  It will tell me what a year of Nexavar  (chemo) has done for me.  Is it shrinking the tumors? Are they still growing?  Are more spreading? I had been told by my oncologist that Nexavar would not clear the cancer.  That clearing it could not be done.  It was to try to keep them from getting larger and spreading more.  That is as good as the chemo could do for me.

I am very hopeful.  I feel like I am the same today as I was a year ago. That is my hope.  The week after my CT, I will see my oncologist and she will tell me what they found.  Good news would be that things are still the same and not worse.

I have had an amazing past year, believe it or not. A person can have an amazing life even if you are sick.  Too many things have been a spiritual high, and a really great love for so many people in my life between my family, neighbors and friends.  I have so many people who have helped me emotionally, and spiritually, and have just been so kind and loving.  So that is how this past year has been so amazing. I am so much more thankful for everything in my life.  Things I used to take for granted.  Each day is a gift I am given, and I love it.  Whew.  I can't wait for August 26th to come.  I will know much more about my future.

Ava and the ice cream cone

This is my granddaughter Ava.  A couple of days ago I took her to lunch.  We were sitting there eating, and she got a free ice cream cone with her meal.

After she ate her meal, they brought her cone out.  She was licking on it and was having such a fun time going out to lunch with Grammy.

Then she said,

AVA: "Grammy....would you like a lick of my ice cream cone?"

ME: "Sure, thank you", I said.

As soon as I took a lick, Ava looked up at me with those beautiful eyes, and said.

AVA: "Grammy.  You still have cancer don't you!" (more as a statement than a question.)

ME: "Yes, I do."  I couldn't understand why that all of a sudden came out.  Then it dawned on me.

ME: " Do you know that you can't get cancer from me if I lick your ice cream cone?"

She happily looked at me and smiled.

Wow!  That was some serious stuff.  My granddaughter thought she could get cancer by sharing with me, and still offered me a taste of her ice cream cone.  How humbling was that?

Then she said.

AVA:  "How old are you going to be when you die with cancer?"

ME:  "Probably 109 years old."

AVA: " Wow Grammy.  I will be 20 and Capri will be 10"!!!!

I got such a kick out of that.  Capri is 10 months and Ava is 5.  You gotta love kids.  They are Gods gift to us for sure.

My summer

I haven't written much lately.  Things have been going well with me, with the exception of my sore feet, hands and tongue, as always.  My hair is growing so, so slowly while taking chemo, and I just want it to get long enough to have it cut in some sort of short style, but it still isn't.  I am going to have to learn to figure out curly hair when I have to start fixing my hair.  But right now, I just throw a hat on.  It's cool though for the summer.

Dr. Klein called and wants me to start taking iron.  My blood showed something going on, so I need iron.  I am picking it up today at the pharmacy.

I have had such a great summer so far.  Fun family reunions, and get-togethers, a trip to Vegas, Arizona, and Montana.  It has been fun.  I think our summer trips are over now.  It's been great!

Seeing Dr. Klein, my oncologist. I look cute? Are you kidding? I'LL TAKE IT!

Yesterday was a great day! I visited my oncologist.  I haven't seen her for two months. They flushed my port. Took blood, weighed me, (these are things that I do each time I go) took my blood pressure, and waited to see her in room 1. I was told during my port flushing, "Oh you look so cute".  That made my day since I don't have people tell me that with the "hat-thing" these days.  But she said it. 

When my doctor came in the room, she said, "Oh you look fabulous". I looked at her like, "what"?  I realized that all women feel unattractive during chemo.  They lose their hair and they feel like they have lost beauty, identity, self esteem, and this whole office works to build it back up for you.  Two thumbs up for my doctors office.

She said that I have now been going to her for just over a year, as it was June 4th last year. She smiled, as if she was so happy about it. She asked me the usual questions I get asked each time.  Some of them are funny.  An example:
"Do you eat because you have to or because you are hungry?"
Geeze.......BECAUSE I AM ALWAYS HUNGRY. But I understand why they ask it. I have had times that I just didn't want to eat.  That is why I lost my 30 lbs. Lack of wanting to eat.  But I don't feel that any more! yay! 

She told us from my blood taken that my iron might be low or that I might have bleeding in my stomach.  She poked around my stomach and I didn't feel tender.  There could be a chance I have to have another endoscopy.  Hopefully not.

She said that I am doing great, and look great and how happy it makes her.  I asked her if my cancer could be slow growing.  She said it could be and I could have had it 1-2 years. Maybe not.  It doesn't seem to be growing too fast now, but between all the prayers and such going out in my behalf, and my chemo I take daily, the liver cancer seems to be doing nothing right now. She wants to see me in two months.  Just prior to seeing her, I will take another CT scan and she will tell me the results when I come in.

During our family prayer, I all of a sudden lost it.  I could not talk from the lump in my throat.  I just was overcome with gratefulness that I get to hang out with you all for hopefully a long time to come.  Things are looking good!

Life After Death

This is the book I just talked briefly about in my last post that I just wrote.  This book has changed my thinking about paradise and what happens when we die.  I feel so comforted to know the things that I learned reading this. I totally believe everything he said.  I strongly suggest anyone wanting to know about their loved ones after they die, to read this book. I am not scared of the transition when it happens to me.  It's all about service on the other side.  I just hope I can give service here so I can practice for there when my time comes......which will be a long time down the road is my plan! 

Another year of Nexavar. Get better Vi.

I haven't written for quite awhile.  Not because I am a slacker.  Because, things are pretty much the same this past month.  A lot of palm and foot pain.  I am taking some medication now to help with those nerve endings. I am now taking it three times a day in hopes that it will help.

The company that makes my Nexavar, (my chemo tablets) called us.  Remember when I started a year ago being told I would be taking Nexavar, and how expensive it was.  Between $800-$900 a month!  That is an insult to charge people that to help them live longer. Anyway, we had to talk to the company to see if we could get the amount lowered, and they did.  Lowered it a ton!  Well, our time is expiring and we have to fill out all this paperwork again. They called us three days ago, and they almost tripled what we are paying now, but we are still grateful as it is a far cry from how much it could be.  It is hopefully prolonging my life and blessing me. I would like to believe it is.

I would like to tell my stepmom Vi, how much it means to me when she sends me cards, thoughts, pictures, and special poems in the mail to raise my spirits when I am down.  She has really shown love and kindness to me through my struggles.

Right now, she is in the hospital struggling with her own health.  I want her to know I am now praying for HER on my end.  Wishing for her to have a total recovery and be the Vi that I have known  for all these years. The same loving and kind person that she is. Hang in the Vi.  I truely care for you and want you to get to go home soon.

I want to tell about this wonderful book about a man who dies, and is able to tell about his experience on the other side.  I will try to put my thoughts about it soon.

Love my life. Love my family and neighbors and friends, and especially love my husband, Kim. Thank you to all of you following the path I am traveling.

I need to do a little "poor baby"

This last week or so has been a little difficult for me. I guess I have just been tired of all the stuff going on with me that just make me not feel well. My feet just really hurt on the bottoms. I am tired of limping most days.My hands and face are dry and chappy. My palms are sore.My tongue is also so sore and tender.  The constant diarrhea is getting me down, and as I pop my tons of medicine every morning and night, I want to throw it all down the drain and say "to heck with it".

My mouth always has sores that wake me up in the night with a pain that would feel like pain spreading fast like fireworks going off in my whole mouth during the night. Then in a few seconds it is over until it happens again before morning.

And my blasted hair is growing so slow, it makes me so so sad.  I just want it to be long enough to look good in a short cut.  But it doesn't. I hate to put this on paper, but I just feel so not pretty. (A nicer way to put it).

I look in the mirror on a no-hat or wig day, and I feel I look so unattractive. It makes me really feel sad. Cancer does a number on a person. Physically and mentally. I feel like I need a mental makeover.  However that would be.  ( I think I may have made that word up.)  I guess all this is tiring me and wearing me out with the same things, day after day. I keep thinking, I know it could be worse. I get that. I think of that all the time.  I want to feel pretty with my short curly hair that stands up straight on my head and makes me feel like a boy!  It is getting summer. I want to not have to wear hats and look nice.

Sorry I'm whining. I don't like to. It's just been tough recently with it all.

It's been one year!

On Mother's Day,  it was one year ago that I became very sick and went to the doctor the very next day.  One year ago today, Kim and I were told I had cancer.  Then a long process took place before I knew what kind.  Maybe almost two months.  I wouldn't change this past year for anything.  I thought about it the other day, if I could go back to my life before cancer.  And I surprisingly wouldn't want to.  I have changed.  Kim has changed.  My whole family has changed.  I think it has brought us closer.  I am happier now than ever before.  I am not scared of death, or the other side.  So, no...I wouldn't want to go back and not go through what I have gone through. It has been a huge blessing. I know it sounds crazy, but it has. I am a survivor! A happy one.

My Curly Hair

So here is my very curly hair coming back.  It does seems to be coming out but I am hoping it is because of the change from winter to spring.  I seem to go through loosing some hair that time of year.  It will grow extremely slow while I am on chemo and it sure is.

What? Not again!

Ok....so......my HAIR is FALLING OUT AGAIN.  Dog gone it. Take a deep breath.  Enough said.

Great day to be alive!

I am sooooo happy today:  Let me tell you why:

Friday, April 18, I met my new Family Doctor for the first time. Kim and I really liked him a lot.  He spent 1 1/2 hours with me that day.  Kim went with me to see what he thought of him.  We both were completely sold on him. He was so supportive of me with all the stuff he will be treating me for, especially my cancer. It was a great appointment.

Today, 4 days later, I went to see my oncologist.  I haven't seen her for 2 months, and she was glad to see us again.
2 good things:
1.  My blood was great.  Nothing out of the ordinary
2.  She said I am doing great. And no CT scan for 3 or 4 more months! 

I haven't had a CT scan since Christmas but she doesn't feel I need to have another for quite some time.  She made the comment that I have been coming to her now for almost a year. I told her that by my first oncologists opinion, I should almost be dead.  Then Kim, (cough), said, (cough, cough):  "He is a horses ---". I looked at him like, "what did you just say"?
My doctor peeked around her computer at him with this surprised look like, "did you just say what I think you did"? We both were staring at him for just blurting that out. I felt like saying, "Kim......tell us how you feel about him, why don't you?" Then my doctor started laughing.  She started trying to give us that other doctors point of view those 11 months ago, and why he would say the things he did.  After she was through talking, Kim said. " He's still a  butthead. I will now shut my mouth". We both were laughing.

Anyway....I am so thankful for today.  I feel even more certain than I did before that I am doing  good, and that I need to make goals and plans for my life more than just a few months in advance.  

She helped me today with some of the things happening to me from the chemo, but told me that I am lucky.  Most people have such worse things to go through.  I was so in agreement.

Anyway, I feel on top of the world today!  Woo hoo! I am loving life!!!!!  

Health update....... Lots of "Ouches".

I have been extremely blessed to have not needed to see my oncologist only once so far in the past three and a half months.  I see her again in a couple of weeks, which I am sure she will get me another cat scan appointment.  It will have been 4 months by then.

I don't know if  it is the length of  time spent on chemo, or if my cancer is getting worse.  I only know that I am feeling much more affected by the chemo.  My poor tongue feels like it has been badly burnt, everywhere.  It is so hard to chew anything crunchy or anything chewy.  Anything remotely spicy or hotter than very lukewarm sends me through the roof. I feel like I have to chew like I am a child learning how to chew solid food.  I have to gingerly move the food around in my mouth and I feel self conscious now of people watching me eat.

Yesterday and today have been crippling.  The bottoms of my feet hurt enough that I can't walk well. I have had to wear socks the last few months around the house from the tenderness of my feet, but now it seems nothing seems to help.  My palms also have gotten more severe, and there are quite a few things I can't do now with my hands.  It has been frustrating.

I also have felt very very tired.  By noon some days, I am ready for a nap, and I feel a dramatic difference in my strength.  I feel weak.  I am having a harder time lately.

My blood pressure has gotten really high the last few weeks, which has made it necessary to find me another family doctor to replace our previous one who died the end of December.

I have looked forward for conference to buoy me up.  I don't want to complain and be a Debbie Downer.  That is for sure.  If I start acting like that, will somebody kick my butt!

Hey....a good thing though!  My hair is growing more, but because of the curls, it looks shorter.  But as soon as it gets warmer, I may try to go out with no hat or wig.  I was able to color it darker so it isn't white (or orange) and it looks thicker now.  The top front is still really sparse.  But getting hair back is making me happy.

My Talk In Sacrament Meeting

The bishop asked me to speak in Sacrament meeting last Sunday on how the priesthood has influenced my life. I was actually very happy to speak on that subject since as of late I have  had more priesthood blessings than normal. I am so grateful for the power of the priesthood .  I feel it and am comforted. As happy as I am with our new kitchen, I am more grateful I have an honorable priesthood holder in my home. Life is good!

Old kitchen....VS......New Kitchen

 

Above is pictures of our old kitchen.  Below is our new Kitchen.

 

 

 

 

 



 I never ever expected it to be so beautiful.  Thank you to all who helped to make it like this.  Thank you, thank you, thank you!!!

(We haven't brought the table in yet.)

Vacation in Southern Carribean

This past two weeks have been so much fun.  We went to the Southern Carribean out of San Juan and went to St. Thomas, St. John, Barbados, ST LUCIA, St. Kitts, and St. Marten.  The main place I was excited to see, is evident! St.Lucia.  If you have followed my blog, I had a port put in  my chest back in June to be able to hook up my chemo to.  I ended up being able to have my chemo through a pill, and haven't utilized my port other than to have it accessed every six weeks to clean it out.  My niece said I should give it a name, which made me laugh.  I decided since it was a port, I would name it my favorite "port" which is definitely St.Lucia.  So when we went to St. Lucia last week,  I introduced my "Lucy", to her name sake, St. Lucia.  I have always thought of St. Lucia as what Heaven would be like.  On our water tour around the island, I was talking to a sweet 20 year old St. Lucian young lady, and I told her heaven would look like this island.  She very quickly answered me with the best comment ever.  "Heaven is going to be ever so much better than St. Lucia".  I feel so lucky to have been able to go back again.

We got back Monday night, and when we came in the house, there were welcome home flowers and balloons and my new drawers in my kitchen were filled with plastic black ants and rubber mice!  Oh yay!  It was pretty funny!

On our vacation, I had some rough days.  Kim gave me a blessing one night, and many other prayers were given for different difficulties I had.  One morning, we had just started a tour on Barbados, and I got very ill. I knew there was something I could do to help the pain, but didn't know what.  I silently prayed,  and said that I knew HE knew what I could do for me to help myself.  Please help me to know.  The second I finished, I was told to drink some of my bottled water.  I did, and I was able to feel so  much better within a minute. I ended up in the onboard doctors office one day from an ear ache but my bad times were so minute to the great time I had on our vacation. I found out that my skin reacts to sun much differently than before chemo. I would get red blotches from the sun in weird places.

While we were gone, our kitchen was finished.  The day after we were home, our appliances arrived and now I am busy putting things away in my cabinets.  I feel like I am having Christmas times 10!

THUMBS UP!

Ok. This is the best week. Crazy......yes. Wonderful......yes. Exciting......another yes.
Today I saw my oncologist Dr. Klein. (Did I say how much I love her? Oh, yes.  I already have probably more than once). I trust her totally with my life. She is witty, kind, she cares for me. I feel it. Sense it. Everyone in her office couldn't be more loving. All of them women, which I didn't know when I went there, but they are the best.
Today in visiting with her, my port, Lucy, (St. Lucia) was flushed out since I don't use it with taking my chemo in pill form.  It has to be flushed out every 6 weeks.  It actually had been two months.  My blood tests were wonderful.  Everything looked good.  I was so happy. Dr. Klein said I still look healthy. She talked to me about my hair quite awhile.  She is happy about how it is coming back.  She said most times it comes in gray or white and color comes after awhile more of growing.  She also says the hair usually grows very slow taking chemo. That is the truth!!!!! It is still so short. Hardly any on top.  Mostly on the back and sides. Today was great hearing good news.

This week, our kitchen is being rebuilt.  He will start Thursday. Countertops Friday. And I am ecstatic! I constantly daydream about how it will all come together.

Kim has vacation soon and I can't wait to go to a warm climate and just forget all my concerns and worries for the past 10 months and just get to be normal for awhile. I told that to Dr, Klein, and she said, "you are normal". I told her I have a new normal these days. My new world of normal. I am reminded of it every time I look in the mirror.  That's one reason I want my hair to come back so I don't see the "no hair" look each day.

I talked to Dr. Klein about feeling like my face is aging rapidly. She laughed and said I am not. She sees no difference, and why I think that is because most women when they look in the mirror, they adjust their hair, or something to do with their hair. When you have no hair, your whole face is bare with nothing to hide it and lines on your face are more noticeable because of no hair for your eyes to go to.  It made sense and made me feel better.  She always seems to have an answer for everything. It is comforting.  Life is crazy and exciting! I love it. Thank you for wanting to read my blog. Over 13,000 hits! And it's only me!!!!  So humbled!!!!

My Aging Body and growing hair

I saw my oncologist almost two months ago.  It was the longest time in between visits that I have had thus far.  Today is Thursday, and I will see her Tuesday.  I am assuming everything will go fine.  I haven't had particularly anything awful happen.  Just the same stuff.  Very tender tongue, bottoms of feet and very tender palms.  I seem to be aging off the scale fast, on my face.  It is happening other places also, but my face visually ages weekly.  That has been disheartening, but Kim keeps telling me he doesn't notice nor does he care.  I told him after several more months I will look like his mom, not his wife.  

My hair is probably about two inches or just under, and curly, and the orange has washed out.  I am getting it colored next week before our vacation so I have noticeable hair.  I won't color it myself, as you saw in a previous post, it didn't take for some reason. 

Can't wait to find out about my blood tests.  They have always been pretty good.  I am planning on it being the same. It was so nice to have had a two month break. More to tell next week.

My Kitchen

Last spring, around March or April, we got serious about remodeling our kitchen.  We had some money saved and after 39 years, it was the kitchen's turn to be remodeled.  I was so excited because, essentially it is 'my' room in the house.  I know where I put things, and I mostly am the one in there. I was so excited to pick out our cabinets, countertops, colors of paint, etc.  We had talked with the cabinet builder and had set the date to install cabinets, the first or second week of June.  I had picked out my appliances and everything.  I had waited a long time for this and it was finally going to happen.

 

 

The first week of May, was when my cancer symptoms surfaced and I was diagnosed with liver cancer. At the time, we had no choice but to cancel our kitchen plans.  I was in and out of hospitals, surgeries, all kinds of hospital tests, and chemotherapy.  Week by week our money saved for the kitchen, depleted.  Kim said he didn't want the kitchen anyway, if I wasn't going to be in it.  At the time, we had been told I had just one year to live.

 

In the fall, I talked to Kim about the kitchen again, and he was less than enthusiastic about it.  He said he had enough on his mind with all that was happening, and he couldn't take on anything else right now.  Besides, our money was now half of what we had saved.  I was sick inside.  It was my fault the money had to be spent, so I should just accept that I would never get my new kitchen.

 

Then Kim came up with an idea of not doing it like we had planned, but do a modest remodeling, by only replacing cabinets, and no walls taken out.  It would save on replacing flooring, and not much mess, and MUCH less expensive.  I knew that this was better than nothing, so I accepted the fact that my kitchen would not be opened up with the wall between the table and cabinets gone.

 

The next thing I knew, after Christmas, he talked to me more about it, and if we didn't do this and that, less expensive appliances and so forth, maybe we could proceed ahead.  I was so excited I couldn't sleep.

 

With the help of some very kind and thoughtful neighbors, who offered to help us with the remodeling project with all the things Kim and I have no idea how to do, (electrical things, canned lighting, refinishing walls, etc.) they were willing to give of their time to help us make this project a reality, and we got to take out the wall!!! Woo hoo!!

 

This past two weeks has been quite the project thus far, and we are way down the ladder still from being finished. But as we have learned with all of our remodeling projects through 39 years, "you have to make a huge mess to have a beautiful outcome". 

 

 



 These two pictures are the same wall. Goodbye wallpaper, and everything else on the wall.

 

These next two pictures are the wall we are taking out, to open the room up.

 

 

And this is my kitchen pictures. These cabinets are metal and our house is the house Kim grew up in.  It was built just after World War II.  This kitchen is from 1949.  I am so happy to wave goodbye to them!!!!

 

 

This pretty much sums up what it looks like now.  The stove is still there so we can cook and Kim left  the sink intact until we "have" to remove it.

The room is so open now.  My dream is coming true! I can't wait to see the completed project.  Hopefully in a month.  Until then, our kitchen is in the living room. I am so happy my cancer did not stop this project.  Whether I am here many more years, or less, it needed to be replaced, and thanks to some friends and neighbors sharing their time, it is becoming a reality!!!  I love my life!

Curly eyelashes!

I noticed yesterday that my eye lashes are growing back....and they are curly!  I have always had the straightest eyelashes and had to use an eye lash curler.  I tried to put a little mascara on the lashes coming back.  I couldn't see them before because they are colorless.  When I tried the mascara is when I saw they were coming in curly!  I have a big smile! Yay!

The Power of Prayer and the Priesthood

There are most likely some of you reading this that are not a member of my faith.  I am a member of the Church of Jesus Christ of Latter Day Saints.  Some call us Mormons because we have another set of scriptures that goes along with the Bible, that takes place in America.  The Book of Mormon.

Yesterday, I talked with my husband and told him how strongly I felt that my cancer condition should be such a more debilitating story today, 9 months later, than it is.  I literally have felt the power of so many of your prayers.  I have had the most beautiful blessings through the priesthood power of those having priesthood authority in our church. It has blessed me emotionally, spiritually and physically. I know there have been those of you who have fasted for me.  Prayed for me.  Put my name on the prayer rolls of our temples all over the world.  With the faith of those wonderful people, I am here today living my life happily, with my cancer pretty much the same as it was 9 months ago. Not better, but not worse.  I feel a peace in my soul that comes from all of these things coming together and blessing me, my husband and family.


I asked Kim yesterday, "How can I thank all of those who have prayed and fasted for me? I don't even know who all of you are?".  He gave me good advise.  He told me to pray for others who need prayer. That is how I can pay- it- forward.  Thank you so much to all of you.  Your cards, and well wishes have blessed Kim and I.