25,000 views

Wow. I can't believe that I have had so many views on this blog.  And you are not bored already?

New Harmone Pill

I saw my regular oncologist this past week.  I haven't seen her since before I started radiation. 

I stopped the old harmone pill, and started a new one.  This one has a few side effects that I don't like, one being that I could start having hot flashes again. Really?  I only had them for 20 years is all!!!!!  But, maybe this is the winner!  If so, bring them on for 20 more years!!!

When I am in my doctor's office, she has me lie down and she presses on the parts of my abdomen where  the tumors are.  Usually, I am not "that" sensitive and I can take the soft pressure.  NOT TODAY!  No matter where she softly pressed, it was very uncomfortable/painful.  She said she thinks the tumors are inflamed from the radiation and that is why they are so tender.  I hope so also.  It sure was different from normal.

My itching is, I would say, 75% better than before radiation.  She and I both think that one of the tumors was causing the itching, and since it is shrinking, the itching has cut back hugely!  That was one of my worst side effects of cancer.  The insane itching!!!  Yay!  Such improvement. 

After listening to General Conference this past Easter weekend, I realize again, God's hand in my life.  I know I am a name, an individual, and his daughter.  I know that the trials I have experienced in my life, have been for a very good reason.  To give me character. To give me empathy for others, and to learn patience, along with other things.  I just hope that I am learning the things from trials that I am supposed to learn and not being a whiner.  Some days I feel like a "whiner-forty-niner!"  Especially the last couple of weeks with some minor surgery and getting a sinus infection on top of the inflamed cancer.  I didn't know which thing felt worse.  Today, I started an anti-biotic and I am hoping to be feeling on the mend, with that and having my stitches taken out.  Life is going to get better soon.

My Flag made it to the top of Killemenjaro

Well, I have been following "Radiating Hope", which is about the Tibetan flags of cancer patients making it to the top of Mount Killemenjaro in Africa.  Bonnie, my nurse at the hospital where I had radiation, went on the trip to hike the flags up, and I got to follow the course on facebook.  It was exciting to see the flags flying between tents, and to see them up close, and the fibers of the weave of the flags becoming frayed just like they told me they would do.  I cant wait to take our personal

 Tibetan flags outside for the summer and watch the fibers go to Heaven, (as they say) and bless the cancer patient.  Pretty awesome, huh!

My flag is going to Mount Kilimanjaro March 20.

I wish there were little frowny faces that I could put on this post.  Just pretend there are, OK?

I saw my radiation oncologist today.  Kim and I thought we were told a month ago when I finished up the radiation that today we would know how the tumors were doing since they got zapped.  Well, that didn't happen.  We had our hopes up to find out if 'operation raisin' worked or not, but now we have to wait for May 21st to find out. ( More frowny faces....I hope you can see them 'cause I can.)

When I went to see this young whippersnapper today,  (remember how I said he looked like he was only 12 years old), we had a talk about how the side effects had been, and still were.  I asked him to show me exactly where those 3 tumors were, and he drew me a picture, and told me they were easy the size of tennis balls!!  I questioned him on that and he said easily that big.  THREE OF THEM!!!!!! Seriously? Was he kidding me? I had no idea that they were that big.  I know I have 5 tumors.  So if three are that big, then how big are the other 2?  It explains to me why my stomach is distended so much and how I know I am not imagining it.  I do know that one of the things one of the tumors was doing was causing havoc with swelling of my left leg and ankle, and that has quit so that tumor must be smaller.  The other two are also going to be smaller. Just you wait and see.  If they were tennis balls, then they aren't going to be raisins.  Maybe golf balls? Shriveled up ones would be good.

Here is something fun.  Remember the Tibetan flags I showed a few posts ago?  Remember how they are taking my flag along with other cancer  patients to the top of a mountain and hanging them for good luck? Well, they leave for Mount Kilimanjaro Friday!!  The nurse who works with me when I see this doctor, is flying to some far away city where ever this tall mountain is, and she is taking the flags and will be climbing the mountain with a group of others.  She will be wearing a GPS so I can follow her and follow the flags going up the mountain.  Doesn't that sound fun? The Internet address to follow the flags is:
                          Radiatinghope.org

It has a facebook page and I am excited to follow Bonnie, my nurse, while she is climbing.  Holy cow!  I got to write on a flag for her today to give her inspiration, I use when I get down with my cancer.  It will be a surprise to her to get these inspirational flags for her to climb with when she leaves.

That is about all I have to say.  I can't wait to follow my flag with my very own name on it. Now I am writing happy faces.  Can you see them?

I am a 'sick' lump on a log! That says it all.

I know I have been bad for not saying anything about my condition 'after' radiation.  Well.....

1.  Sick, sick, sick from nausea in the mornings and into late afternoon.  I finally took Zofran, for nausea in the mornings before breakfast and that helped tons. 

2.  Extreme lethargy.  Tiredness off the chart.

I called the radiation office and she said I could have these side effects a month.  And they would dwindle each week.  The nausea has dwindled, but the tiredness is still really bad.  I keep thinking something else must be making me this tired, but then I think, probably not.  I just need to be patient.

Why is it that anything to help cancer, that they sock it to you big time financially. Doesn't seem fair. 

Last Radiation Day....I am a bell ringer!

What a day!!  Today I finished my radiation.  While I am in the tube, I sing primary songs to help me take my mind off of the loud noises, and the time goes by faster.  Lying there with my arms above my head and having to hold perfectly still for a half hour takes it's toll. 

When I was finished, I was elated.  I went out in the waiting room to Kim and they directed us back in the hall.  The video above is what happened.  There was a gold plaque with a short poem on it about surviving cancer, and how I was done with the radiation, and to ring the victory bell three times.  If you are watching this on a cell or ipad, it probably wont show.  You need to see it on a computer.  All of the crew that has been with me the whole time were there as I rang the bell and they all cheered me on after I did it.

They then told me about these Tibetan flags that have a meaning of hope and health, and I was given 5 of them to hang outside and the weave in the flags are loose, and fibers of the flag will fly out and it goes in the wind for hope and health.( I hung them in the house to see them for awhile.  There is all this writing I can not read on it.)

Then they told me how my name will go on a Tibetan flag and it will be taken to Mt. Everest/ Himalaya's by hikers and hung on top of the Mountain to fly freely and fiber by fiber, go in the wind.  I guess it is a cool ritual.

Then there was a sack they gave me with a blanket and a hat for me.  Isn't that the kindest thing?  I was so impressed and they have been so extremely kind to me through the whole process. 

Remember, this is "Operation Raisin", and that is the main goal here. 

Valentine's Day/ Over hump day

Happy Valentine's to whom ever you are reading this.  I have been making chocolate covered strawberries all morning, milk chocolate and white.  I have a couple of dozen and they look so yummy!

Well, Thursday was supposed to be my 3rd radiation, but after trying 3 times to get the machine to work, they sent me home.  I went back yesterday, Friday, and everything worked without a hitch.  They told me as I left that I now was over hump day,  Yay!  Only 2 more times.  Next week on Tuesday and Thursday and then I am done.  They are extremely nice there.  I can't complain about the company I hang out with there. I mostly am just tired.  That is not considered a problem that I am having from radiation.  I am always tired anyway.

13 hours of sleep?

Good grief!  I was so so tired last night.  I went to bed at 8:00 pm and didn't wake up till 8:45 am!!! Almost 13 hours of sleep!!!  And I was zonked.  Even this morning when I peeked to see the time, I wanted to sleep more but was almost ashamed I was still asleep and tried to get up.  Well, now you know how blasted tired I was. I hope today I am not tired like yesterday.

Much better radiation day!

Woo hoo.....better radiation day!  I didn't get sick.  I did take mediation under my tongue before, so maybe that is why.

They were situating me in my beanbag cast and measuring me this way and that and she moved a soft object from under my arms that I had above my head  and I  tried to move my head to see a soft landing now for my arm, and I screwed up the whole aligning thing.  So they had to re-do me.  I won't do that again.

There are many loud noises going on in the tunnel while I do this and I tried not to think of them this time and let my mind think of something I enjoyed, or sing some of my favorite songs.  It sure helped and made the time go by faster.  Kim was able to go with me this time.  It was a good day.

Again, we were told how they are really giving me a lot of radiation with these five times.  It makes me wonder, what it is doing exactly inside me?  What it does to zap them? With thousands of micro beams, like they said happens, I wonder how it all takes place. Just curious.  I do feel tired. Good day.  And Kim cleaned my car!  Can't get better than that!

My first day of radiation, and getting sick

 

 

These are two of several pictures I had them take of me in the Tomo Therapy machine as I was finishing my first day of radiation.  These are the only pictures I dared put on my blog because of my top and sweats being pulled up and down to show the tattoos on my abdomen/torso that they made. 

The purple is the bean bag.  See how it conforms to my legs feet and ankles?  And the saran wrap stuff I talked about in the last post on top. 

The first picture is me coming out of the tunnel from the radiation.  It all took about 30 minutes and with my arms above my head, they were about dead staying in the position that long.

After the procedure, I went in the doctor's office and waited for him to come in and talk to me.  I had my daughter Emily with me.  Within about 5 minutes, I started feeling green, and I found the garbage can in his office and out came breakfast. I know.  tmi.  Then he came in and I had to go to his garbage can again while he was in there.  [ Embarrassing!]  He felt so bad that it had affected me this way.  We made some plans for next weeks appointment so that I don't get sick, and a prescription. He also told me that everything went perfect and how they really gave me a large dose of radiation today and are giving me the weekend off to get used to it before next week. Emily thinks the doctor looks like he is only '20' years old!  Funny stuff.

Before I left the hospital, I had to run to throw up again and twice on the way home.  I felt an queasiness  till late afternoon.  And I was tired!!!  But boy did I sleep good that night!   1 down, 4 to go!!!  Hoping for raisins!!!!

Getting ready for another phase in my cancer life.

Tomorrow is the big day. 
 
My Radiation.

The first time.

I am excited, yet scared.
 
Through faith, my scaredness seems to be less than my excitement to start this amazing process.  Like I said, they were going to do a phantom surgery, meaning they are doing the surgery without me to make sure all the I's are dotted and T's crossed before I come. 

Last night, was an interesting night.  I kept wanting to cry.... for no reason, or at least I didn't know the reason.  I just wanted to cry and have Kim hold me.  Then in a few minutes, it would happen again.  I think it is build up in my brain for tomorrow.  It's just another crook in the road of the unknown.

Radiation!!

The Bean Bag Suction.......I am a seal-a-meal!

Oh Goodness, where do I begin with this day?

Today I had my Radiation Dr. Appointment.  The office people were so pleasant and kind.  Then we waited for the Doctor to come in.  The door opens and in walks this young nice looking young man about Shane's age.( My youngest son who is only 31).  Kim and I couldn't get over it!!!

He had two plans.  One was less strong radiation with only 3 different directions of radiation coming.  It would be about 2 weeks.

The other plan was much more aggressive and the radiation would be thousands of micro beams. (His choice).

I went in a room today for them to essentially make me a body cast out of a bean bag.  I laid on a CT scan table where the bean bag was laying on top.  4 people prepped me for this first essential CT they would go by.  I had them tucking suction tubing all around and under the bean bag and over the front of me.  Then they put something that looked like saran wrap all over the top of me.  Boy were they tucking everything perfectly.  Then they turned on suction, and it sucked every bit of air out around my body and the bean bag formed to my body all around me. It was the weirdest sensation I have ever felt.  They asked me to wiggle my toe, which they could see through the plastic on top, and I couldn't.  They gave me the CT scan and from that they know where to tattoo 5 dots on my stomach to align with some sophisticated instrument to send the micro beams. By being in suction, I can't move one smidgeon which could make them make a mistake.

 I was told that several people will be in the room when this happens because there are so many things that have to happen precisely as planned.  In fact, they will be doing a phantom surgery on me before I ever come back to make sure they do everything perfect.  If they hit a vessel or something that they shouldn't.......well....we wont go there, because they wont. 

The machine will zero in on three big fat tumors that is pushing up against my kidney and some important blood vessels that could eventually really cause me problems.  This machine should turn those tumors into a raisin, is the way they put it, and essentially split the DNA and it will die.  They could start up again sometime, but I would have to wait a year to do anything again.

This was the most interesting thing I have ever seen!!  They helped me out of my body bean bag mold and they put it in a closet for me every time I come in, and did I mention?  I only have to go 5 times!!!!! Awesome! Then they take another CT scan in about 3 months and see the tumors and what they did.  Mine will be raisins! 

There is just so much to tell about this. I hope you found it as fascinating as I did.  I go and get my first radiation Thursday.  I most likely will be fatigued after, and could be nauseated since it takes place in my stomach.

My family will be fasting for me this Fast Sunday.  We need total precision in this process.  That is what we are fasting for.

So there is my day.  Was your day as sophisticated as mine?  Oh......hardly.  Admit it.

Goodbye to my wigs

Guess what got put in a box and stored away? Right there.  You can see them.  I have worn them almost 1 1/2 years now.  In fact, I think of the brown one on the right as me now.  That to me was my new identity.  It was longer than my other hair used to be but looked so natural on me and I loved that one.  The black one was my "ooh-la-la" wig.  Whatever that is supposed to mean. My black hair look. Not my fav.

So away they go, and I am 100% into my real hair now.  Like I said before, one puzzle piece at a time my life changes.  This is for the good.  They were really itchy and I didn't like wearing them anyway.  Bye bye, to that part of my journey.

Good News or Bad News? Radiation is coming.

Wow!  Good news or bad news is the question?  I accept this as good news........

Two days ago, I saw my doctor to have her report to me on my CT scan.  All of the tumors have grown about 1/4 inch, one a little more than 1/4 inch. So that harmone blocker was not working, and the tumors continue to grow.  She wants me to start radiation.  She didn't know if radiation could even get into there and zap them.

Well, I just got a call from her today telling me that the radiation oncologist whom she picked, seems very positive that he can help me and that he should be calling me to meet with me. Wow.  Awesome!  It won't be a walk in the park.  She said it most likely would be every day except weekends for 4-6 weeks!!  Holy cow!  I sure hope that they let me drive myself.  I can't expect others to haul me down there every day for weeks.........that would make me feel sooooooooo uncomfortable.  (Take a deep breath..........)

So where do I go from here?  I wait for this doctor's call, which I think will be soon.  Then my Heavenly Father will guide the rest.  "He" is in the driver's seat.  I am going along for the ride. I hope the ride isn't real bumpy.  I kind of choose them to be smooth, but who am I kidding?  I need to prepare for ruts in the road.

The Puzzle of my Life

 

I have been putting this puzzle together that I got for Christmas.  It is a 1000 piece puzzle, and as you see, I am not even close to being half done.  At this point in the puzzle, I am having a hard time finding pieces for other areas.  I look at all the pieces that I have left, and I wonder if I can really finish it.  As I sit at the table, I look through the box, and I find one piece that fills in a hole here, and then I find another that fills in a hole there, and then another and so on.  It seems tedious, but I think that it is one less piece in the box.

 

I thought how this is like my life right now. Waiting.  One way is with my hair.  I want it to get past this stage that it is.  I am so grateful that I am not bald like last year.  I am also grateful that my hair came back.  But trying to get past this curl is trying my patience.  I want my hair the way it used to be, because I knew how to handle it.  I knew how to fix it.  I knew how I wanted it at the salon. 

 

Now,  all I know how to do with my hair is fluff it with gel.  I keep hoping that at some point it will go back straight like it used to be and that I can have "me" back again.  I just have to wait, "one piece at a time". I am hoping that those pieces are in my life puzzle. 

 

 

 

It's like that in any part of my life.  Sometime's it's the "waiting game",  and I don't usually have patience for it.  Through this trial of having cancer, I really have learned about "the waiting game". Just like this puzzle.  Things happen, one piece at a time.

 

In 4 days, I get my next CT scan and see how the harmone blocker has done the past 4 months.  I have a feeling that it hasn't worked, but we will see.  I see her on January 20th and she will tell me. 

 

 

 

 

 

Feeling Down and not feeling Well

I really have not had very many good days since Christmas. It has been hard to feel that I am deteriorating with using this harmone blocker and know that I can't see my oncologist for three more weeks.  I hurt and ache through my whole body and feel really weak.  Almost flu like symptoms but I know that it is not.  I feel worse in the mornings and feel normal about 2:00 in the afternoon. 

Kim had a talk with me about this last night.  Essentially, that I need to buck up.  He didn't say that, but after our talk, I told myself that I needed to accept what is happening and pray for help.  We got a book for Christmas that Kim is reading first, and it has good advice for people going through trials.  I will give some points of it when I get a chance to read it.  Kim is inspired as he is reading it. I really think that the aches and pains are coming from the harmone blocker.  I hope so, and can't wait to try a different one when I see her. Oh, I want to know what that CT scan is going to show!!!!!

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.

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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.
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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.