Thursday, October 25, 2012

Visit to Stanford

Well the boxing gloves came out between me and Dr. Schrier.  As always before he comes to visit I meet with a fellow (medical student doctor).  He quickly asked me if I had any problems and quickly stated that Dr. Schrier was aware that I hate Decadron.  I told him the side effects and felt my quality of life was poor.  I'm so depressed, sick, sore and really tired 5 days out of 7.  I'm really starting to stress about taking Decadron for so long.  I fell again last week and know that sooner than later the next time will be serious.
So he took his little notes and left us for about 20 minutes.

The door swings open and quickly Dr. Schrier says "ok, I'm increasing Cytoxan to 300mg and I'm giving you a break from Decadron every other week but you will still be on Velcade every week".  Wow Mom and I just looked at each other and smiled.  I was just asking for one week off Decadron (don't tell him that) but every other week is GREAT!  Now next week will tell.  I have never been off Decadron and still taking Velcade.  So which drug causes the side effects.  I really and have always thought it was the Decadron but next week will tell.  I hope and pray now that it is and not the Velcade.  When I had my stem cell transplant in 2009, they gave me Decadron and not Velcade and I had the same side effects.  Please Please be the Decadron!!!!

Dr. Schrier is concerned about blood counts, kidney function and bladder function increasing my dosage of Cytoxan to 300mg.  He is monitoring it weekly before each chemo treatment.  My numbers are low 70 and he is happy about that.  No new occurrence of Amyloid in the heart.  This was big news to him.  He was very happy about that and felt the Cytoxan is working to protect the heart.  I had a multitude of tests on the heart for the last few weeks.  Every thing has been perfect!!  I'm so blessed to have been given this second chance at life to receive a beautiful gift like this.

Looking forward to my trip to Pittsburgh next month.  A little disappointed that we can't see a hockey game but we will have so much fun.  Our good friend Jeff is coming with us.  He just loss his girlfriend this year and needs to have some time away.  It will be so fun!

I have this beautiful quote hanging from my wall next to my bed.  It is about LIFE.  Smile often.  Be grateful.  Be the change you wish to see in the world.  Try new things. Work hard.  Don't count the minutes count the laughs and above all... make every moment count.

Love,
Debbie

Friday, October 19, 2012

LIFE!!

LIFE!  Believe in magic.  Tell stories. Love with all your heart.  Never give up.  Do what you love.  Follow your dreams.  Be happy.  Live today.  And above all... make every moment count.

These are words I try to live by each and every day.  Sometimes it is very very hard.  I keep fighting because I have so much to live for.  My wonderful husband, Mark, my three sons, grand kids, family and friends.  I have so much more to see and do in this life and I'm not ready to go!



I want to laugh again till my belly hurts!!!!

Everyday it is a struggle to maintain my health, emotions and mental state.  This week was especially hard because I was on both chemo drugs at the same time.  Usually for the past 3 months I would take Cytoxan after getting Velcade.  This month they landed on the same day.  So I was so sick this week.  To make things worst I fell again!  Now my left foot (which I fractured months ago) and ankle are swollen and sore.  Not to say again about the huge cut on my right leg which will turn black and blue soon.  This sucks!  I know I am at risk of broken bones because of the steroid but here we go again. 

I received my light chain count results yesterday.  Last month down to 61 and this month up to 70.  I know its only 9 points up but I was hoping for a big drop before seeing Dr. Schrier next week.  I really want a break and I need it!  I'm not asking to stop chemo (either one) I just want to stop Dex for one week a month.  As I have said before so many times, that steroid is awful and has so many side effects.  I just need a break.  So Tuesday hopefully he will give me a break from Dex.  I lowered my dose from 40mg to 20mg and that has done nothing, so I think one week a month will help.  I want to be a person again.  Being sick from Tuesday till Saturday is not the way to live life.  It is holding me back from doing the things I want to do.  LIVE LIFE!

Keep sending those prayers for Auntie Mary Joan, me and all the others in the world fighting for LIFE!

Love,
Debbie



Sunday, October 7, 2012

MY SWEET LITTLE GIRL!

Wednesday, October 3, 2012

Tests Tests and More Tests

I'm so tired of being poked at for the last two weeks.  I had my annual heart biopsy last Tuesday.  No evidence of rejection.  I met with Dr. Dana and sat down with her to talk over some things that have been bothering me.  I asked her about my survival with a transplanted heart.  She said my heart is very healthy and strong.  She doesn't worry about the heart.  Also, I am living and surviving with a rare fatal disease that my numbers are going down (61) and she is not worried about that either.  What she is worried about is the effects of Decadron on my bones.  She said sooner than later the bones will start breaking and she said I really have to do more weight bearing exercises.  I told her easy to say when out of 7 days only 2 days I feel good.  The reaction I get from the Decadron is getting worst where I sometimes can't even get out of bed.  My family doctor is conducting some muscle lab tests on Friday when I am in the middle of the reaction.  She also said to take Benadryl for the reaction and maybe that will help.  I'm trying everything.  I hate feeling sick, tired and sore every week.  The goal is to get my numbers to normal range 5-26 and maybe Stanford will let me have at least a one week break.  I need it!

Spent last weekend in Chico visiting Danny and Diane Long.  Mark and I drove up on Thursday before everything hit me on Friday.  Friday I couldn't even get out of bed and slept most of the day.  Then Saturday a little better and by Sunday feeling good.  We just stayed at their house eating, drinking (them not me) and talking to the late hours.  They are coming to stay with us on the 19th.  So excited they haven't seen our new home and I'm happy to see them again.

This weekend its to the lake.  We haven't been there for 3 weeks.  Just been so busy.  I'm so excited to rest and relax.  Things have been so stressed around here.

My beautiful loving Auntie Mary Joan is not doing well.  Please say prayers for her.  I just don't want her to suffer.  I love her so much and this is so very hard on my Mom.


Wow does this say it all!


LIFE:  FIND A PASSION AND PURSUE IT.  AND ABOVE ALL... MAKE EVERY MOMENT COUNT.


Love,
Debbie