My First Side Effects.....

Well, I knew it wouldn't be long until the side effects of my little" friends" would surface.  I sort of noticed something last night, but today I'm sure.  My palms are starting to look red and super sensitive to heat!  Picking up a pancake  and testing my dish water was like putting my hand on a hot plate!  So super sensitive to heat! And the bottoms of my feet are starting to be tender and somewhat sore.  I can't be a wimp.  It assuredly will get worse before it gets better.  I was aware of  what would happen to the palms and bottoms of my feet.  Only they most likely will get very red and dry and cracked!  (That hasn't happened yet.)  Last night in bed, my cancer masses bothered me in my stomach.  I haven't felt them like that for many weeks.  I had to keep reminding myself, " the Nexivar is doing its job.... Yea"!

I am excited to have family pictures taken this evening.  I wanted to do it soon in case I lose my hair and get the red facial acne.  While Shane, my son is here from Vegas, I thought it would be a good family picture moment.

Thank you for caring about me enough to read my blog. I wish I knew who you all are that visit. Thank you for comments you leave.  It makes me happy.

July 25th is the Day

I got my chemo medication on Tuesday afternoon.  I decided to wait until after the holiday to start it.  So July 25th is the big day.  I was told by my doctor that this medication should not be my enemy.  The cancer is the enemy and this is my dear friend. I must imagine powerful things taking place in the cancer when I take it.  I am to think of some picture in my mind of what I think of when taking this pill.  Something battling the bad guy.  She wants to know what my image is when i see her next.  As of yet, I don't know.  Any ideas out there?  I am open for suggestions..........  But the day is almost finally here.

Nexivar is a go! Am I ready? NOT!

Today has been a really busy day as far as getting my Nexivar medication. I got a call this morning from the drug company, and they will help pay some of our cost on the drug! We are so happy! We are now down to an affordable amount . A huge miracle. They will help pay it for a year.  Then we have to try and get help again. We will have to do that for the rest of my life as I continue this drug, as I will always take it for as long as it helps. The drug is being shipped to me as I speak. They think I should have it Monday or Tuesday, July 22nd or 23rd. I will start it then.  And guess what? I can lose my hair after all! :(   The nurse from the drug company told me I can have thinning hair and that it could fall out on my pillow or in the shower. They told me the other side effects possible. ( Please don't let me get some of them)! Some sound so awful, including the hair loss. I may have to hide in my house till they go away! (Just kidding....well, sort of just kidding. I could look pretty awful with a face plastered with a red rash and nasty hair).  I asked Kim if he will still love me when I look really ugly.  He laughed and said yes! HE LAUGHED!  This isn't a laughing matter!!!!  Well, OK, it is!  LOL

Where Did 15 pages of faxes go?

Another week set back.  We faxed 15 pages of information about our income to our doctor's office.  I know they received them and faxed them right to the drug company ASAP. We should have gotten a call from the drug company within 48 hours.  Yesterday, after waiting a week, Kim called our doctor's office and asked about it.  They called the drug company and they said they never received it!  (15 faxed pages just disappeared in thin air somewhere by the fax machine!) Meanwhile......after weeks and weeks and more weeks of playing the waiting game.......I feel great.  I haven't been sick for about 4-5 weeks. I just can't believe how NOTHING has worked timely. I keep thinking it isn't a coincidence for some reason. Hey! I am learning patience though. At least I think I am.

Thank you to everyone who has offered suggestions and ideas for my well being.  I have a lot! It overwhelms me the different things out there.

My Book of Memories and Thoughts from my Friends and Neighbors, and Family

This Book my daughter Emily made for me from many of you reading this blog is priceless.  Watch the video I made of it!!!  I was speachless!!  Thank you to all who wrote something to me!!  I love you all!

Hepatoma Cancer- Mayo Clinic- $900- Yikes!

 

Kim and I waiting for the Doctor at my appointment.

Well, as I have said before......this cancer of mine is not going to let us take care of it easily.  In fact, it is so rare/unusual, that my MRI was sent to the Mayo Clinic!!!  That is as high as you can go folks!  I about died when my oncologist told us that yesterday.  But in being sent there, we did find out for sure that what she thought about my cancer, is entirely true. I do have Hepatoma Cancer, which is in the liver.  Here is what I learned yesterday. (Why cant this be easier????)
1.  I will be taking an oral chemo pill twice a day.  Hopefully my body will tolerate it.  If the masses shrink, that is excellent but that means I continue taking it the rest of my life.  I never quit.
2.  If it doesnt work, and I cant tolerate it, I would go on an intervenous chemo which doesn't work as good.
3.  The chemo pill will cost us out of pocket, after our insurance pays, $900 a month.  Our mouths dropped.  That would take our savings in several months.  Not years.....months.
4.  We are now in the process of trying to prove how much Kim gets paid monthly, to show the drug company that we literally can't afford paying that much money on that drug monthly.  I have a lot of papers to fax my doctor office today, they will fax it to the drug company, and if they accept that fact, they will try and find a company to help us out.  Some company who will help share the cost of the drug with us.  If we find a company to help, then when their money runs out, we find another sponser.  Isn't that awful that drug companies know they can charge totally unreasonable amounts because people will pay it when it is life and death situations?  It is a crime I think.
5. My doctor told me I wont lose my hair with this drug!!!  Yea!!
6. The chemo drug is called Nexivar.
7. I can never be cured...(So they say) But I can gain time if Nexivar shrinks what is there.
8.  This cancer will keep a patient looking healthy, and not sick looking for a long time.  But not to be deceived by that.  It is bad. But the fact I am healthy, is a good thing that will help me because I am strong to start with when I begin my chemo therapy.

I can't thank you all enough for your kind comments on this blog, those of you who have helped me with fasting and praying for me.  Those of you who have sent me cards in the mail, have given me love and support when you see me, have dropped off a loaf of bread or cookies, or other caring ways that you have touched me and helped Kim and I.  Each of these things bolsters up my courage and helps me to know that I CAN DO THIS!!! Thank you all!

Another week goes by with no conclusive news

Well, my MRI info I guess did not go to Hunstman cancer institute like my oncologist wanted. Our insurance is not IHC and Huntsman is.  So it is being reviewed at the University of Utah. I did find out I don't have hepatitis A or B.  Hey, I got my feet zoned today and she said I look great!  She has confidence in me getting well. There has to be a reason for all things. So there has to be a reason for this happening week after week.  I don't know what that reason is, but I know somebody who does and He is in charge. Not me.  I think I am going through some earthly testing that is surely testing me and my families patience.  After this, I will never be impatient again at Christmas and unwrap my gifts when no one is looking.  I will have learned patience finally!  ( Kim will laugh when he reads this!)