Special Moments

Today I scheduled a facial with Jeanie, Facially Yours. Before transplant I would have one done monthly. They are wonderful! She is a dear friend that I have known for over 25 years. Sadly, Jeanie's wonderful husband Tom passed away last February after a very brave 20 years fighting Leukemia. He was a beautiful person and is missed every day. Most importantly today I got to talk to Jeanie about alot of things that she and Tom went through during his long battle with the disease. Jeanie shared something special with me and that is to live each day as though it is our last. She gave me this saying and I want to share it with you:

Dream as though you'll live forever,

live as though you'll die tomorrow!

She said Tom and her would read this to each other during his fight. I have to say they live by that saying. I remember the trips they took with their two beautiful daughters. They made moments that took their breath away!!! Thanks, Jeanie.

I came home and looked at my emails and saw an email from Rachel, my brother Joey's fiance. First I had to clear something up, I hate the word "in-law". I told you are marrying my brother you are my sister! So in the email Rachel talked about how important my blog has been to her and my brother. How they look at things differently now than before. That is exactly what I wanted to accomplished when I started this blog. She also told me her Mom in Arizona reads my blog and has encouraged her kids to view it. That makes me sooooo happy!!!

I thought from the very first day what I wanted to say each time I opened the blog to write. I know sometimes (like tonight because I took my Decadron and I'm wired and can't sleep) I tend to ramble on but I'm honest about my feelings. So I want to thank Jeanie and Rachel for these moments in time.

Go out and make moments in time that take your breath away!!! This weekend I plan to make lots. Sonia is coming to meet me and I can't wait to give her a BIG HUG - my shared heart (her sister Jazmin's heart) hugging her. What a moment that will be!

Love,

Debbie

An Angel in Heaven

Jazmin

You didn't add days to my life, but you added life to my days!

I will always be grateful!

Love,

Debbie

Donate for the Cure

During one of my late nights, I started looking on the Internet for anyone who is suffering from this terrible disease. I came across a young man, 17 years old, name Stephen Wright. His mom Chris, has primary Amyloidosis. I read her blog and although I have not had a stem cell transplant (yet) I could see the suffering from this disease. Chris has congested heart failure but the stem cell transplant has saved her life. She is in partial response and will decide soon on the next step to put this disease in complete response. As for Chris's heart, I don't have all the information on what she plans to do in the future. I only ask two things from my family and friends. That is pray for Chris and her family and please look at this web site
www.chrisjourney.com. This is Stephen's web site to his mom and the journey he is about to take.


Stephen is going to ride his bike from Florida to Massachusetts in support of his Mom and research for Amyloidosis. He is accepting donations or sponsors towards the Amyloidosis Foundation. Please look up the site and donate! We need more research to find a cure for this horrible disease. I've never asked for anything like this but I believe this young man has the will and determination to complete his journey and raise $10,000.00 for research. He is also doing this for his Mom but for everyone who suffers from this disease, like me!


Post a comment on his blog and give him support and your prayers to complete his journey safety! God Bless Him!


Love,
Debbie

Amyloidosis Support Group Meeting

Mark and I just got back from the Amyloidosis Support Group Meeting held at Stanford today. It was a great meeting and I enjoyed seeing and listening to everyone's stories.


There were 3 doctors present who specialize in Amyloidosis. Dr. Belinda Ng, cartologist who studied at Boston University Amyloidosis Center. She was very knowledgeable about the disease and of course the heart and how it pertains to Amyloidosis. I asked a lot of questions.


During the lunch break, Mark and I approached the Doctor from Stanford, Dr. Wittles. Dr. Wittles and his wife both work at Stanford and each are in the field of Amyloidosis and Multiple Myaloma. They had a lot to say. I asked many questions such as, will the amyloid attack my other organs. He said usually not. That there is a certain cell in my plasma that will go back to the original organ (heart) and the amyloid will attach again. So Stanford and Kaiser will not wait for the amyloid to attack my new shared heart. He felt my numbers were still too high but used caution. He is not a firm believer of stem cell transplant. He believes in the traditional chemo treatments first then consider stem cell transplant. He felt that if the numbers don't go down in a reasonable time to near normal (5-26) then a stem cell transplant would be the best option next. I'm hoping and praying that velcade and decadron will bring these numbers down to avoid a stem cell transplant. But as I have said before, if the numbers do not come down or if amyloid starts depositing in my new shared heart, I will proceed with a stem cell transplant. That is my only chance to put this disease into complete response.


I have mentioned in my past blog, Dr. Kevin Anderson. Dr. Kevin had a heart transplant 6 weeks before me and also has AL Primary Amyloidosis. He was the first heart transplant performed at Stanford with Amyloidosis Primary and I was the second. Stanford had not done a heart transplant on an amyloidosis patient in twenty years, I believe. I found out yesterday, that Dr. Kevin will be the first heart transplant patient to have a stem cell transplant and I will be the second. Dr. Kevin is my big brother. He goes first and whatever works on him, they will try on me. So I guess we are making history. Stanford wants to become the West Coast Treatment Center for Amyloidosis. As everyone knows, there are two East Coast Centers which are Mayo Clinic and Boston University. So anyone from the West Coast would have to travel and live on the East coast for treatment. That can be very costly and emotionally upsetting to a patient who has to be away from family for long periods of time. So we are very lucky to have such a prestigious hospital here in the Bay Area.


The doctors who attended yesterday cleared up alot of unanswered questions in my mind and I appreciated your support to our group. It was reassuring to see three doctors take time out of their busy weekend schedules to attend our support group meeting.


I made a big pot of spaghetti sauce today and look forward to having spaghetti and raviolis tonight for dinner. YUMMM!!! There I go again about food! Can't help it, it's just the drugs!!!


Hope everyone had a wonderful weekend. I'm looking forward to next weekend when Sonia, Jazmin's friend will come to meet me for the first time. Can you imagine what a moment in time that will be. Jazmin's Mom wants to come next month sometime and I can't wait to give her a big HUG and welcome her into our family. I know it will be very emotional for her and for me too, but Jazmin is here to help us through it. Making memories that take our breath away is what life is all about. I plan to make lots more!!!!

Love,
Debbie

Good News!

Good News! Just finished my third treatment of Velcade and the nurse Cheryl reviewed my lab results and told me that my Lamba count went down from 277 to 163 in just 10 days and one treatment of Velcade. That is awesome! Now I do know these numbers can go crazy sometimes but that is a decrease of over 100. My kappa light chain count is now at 2, which is below range. I will repeat these tests on the 7th of February before I meet with Dr. Schrier at Stanford. Dr. Dana Weisshaar, my heart transplant doctor, called to say that Dr. Schrier sent her a letter outlining the future treatment plan for me. He did say in the letter that I will follow the Decadron and Velcade treatment plan and if my Lamba numbers don't show significant decrease then a stem cell transplant is needed. He wants me to meet with the stem cell transplant team to go through the introduction to save time later. So Dr. Dana is setting up the appointment for sometime next month. I'm so happy to see these numbers go down! It's what I have been praying for. I have to be patient and keep saying my prayers!


The treatment went well today but I'm already feeling the soreness and swelling in my neck and shoulders. I think its because this is my third dose and the drug is building up in my body. Nurse Cheryl also gave me some nausea pills because she said that can happen too. I'm hoping I feel ok tomorrow for my Amyloidosis support group meeting at Stanford. It's a pretty big meeting with several specialists from Stanford who know alot about Amyloidosis. I will have to wait to see how I feel tomorrow when I get up. Last Saturday wasn't very good but each week is different. I'm looking forward to seeing Dr. Kevin and Barbie at the meeting and my new friends I have met in the support group.


Tonight will be a night to relax. I made a pot roast in my slow cooker and will make mash potatoes and a green salad. YUMMM! The weight keeps piling on but there is nothing I can do to stop it until I'm off these drugs. I'm not too concerned about the weight and will continue to do my daily exercises. I will need the extra weight if and when I go through with the stem cell transplant. I will be on massive chemo and the side effects are weight loss, hair loss, nausea, sores and much more I'm told. So having the extra weight will help in my recovery.


Have a wonderful evening! Enjoy this moment in time. I'm enjoying this moment because I know I'm getting healthy and my body is responding to treatment. What a beautiful moment!


love,
Debbie

Heart Biopsy Results

First before I get started, I hope everyone enjoyed seeing my beautiful angel, Jazmin. She is my hero! I wish my donor family love and strength each day. They are always on my mind. Sonia will be meeting me for the first time the weekend of the 30th. I'm so happy to finally meet her and give her a big HUG! It will be a very emotional moment and one that will take my breath away. That is what life is all about. Its not how rich you are or the finer things you have, but how many moments take your breath away! I have had many moments like that. To name a few, the day my sons were born, the day Mark and Erin were married, the places I have been so lucky to see, and the ultimate moment in my life happened on September 26, 2008 - the day I was given a second chance at life by this beautiful girl and her family. Grateful is the word!


So, yesterday was my monthly heart biopsy. All went normal and Mark and I spent the night at the Fairmont in San Jose. We had a wonderful dinner the night before in our room because I was not up to going out. We enjoyed breakfast the next day in our room again and then went to the hospital. I got my results this afternoon and my heart biopsy result was a 1R which means slight rejection. The doctors are not concern about 1R rejections. I did have some changes to my medicines. My cyclosporine count was low (158) and they adjusted my Gengraff (immuno suppressant drug) to 125mg AM and 150mgPM to help bring the number up to 200 to 250. So I started that tonight. Also, Stanford felt I should not be taking Presidone (steroid) anymore being that I am on Decadron. Dr. Dana feels I should stay on it but lower my dose from 5mg to 2.5mg. So I will take that dose tomorrow.


Erin came over tonight and brought her friend Amanda. I hope Amanda won't mind if I tell her story. Armada is 26 years old and two years ago had Stage 4 Lumploma cancer. She was on massive chemo that wasn't working. She was dying and her only option was a stem cell transplant. I asked to talk to her. We met last year at my trailer at Clear Lake. She spoke to me about the stem cell transplant but that was way before the heart transplant or even the chemo treatment. So fast forward to today and I'm faced with the decision to have a stem cell transplant. I wanted to hear the good and of course the bad. She didn't sugar coat anything, which I appreciate that. I need to know the truth. She is completely cancer free after two years and looks and feels healthy. Her thoughts are "why feel crummy every day on these drugs or even stronger chemo, when you can have the stem cell transplant and yes feel awful for thirty days but then feel good after. Not to mention the chance of going into remission. Now there again I don't have cancer and there is no cure for Amyloidosis. It will always be in my body. The goal is to stop the production of new Amyloid being produced and attacking my organs. My future will include more chemo or second, third stem cell transplants. So I have decided to get more information and I will be contacting Stanford tomorrow to set up the appointment to meet with the stem cell transplant team to discuss stem cell transplant.


Tomorrow I have lab draws of blood for chemo lab tests before chemo on Friday. Chemo treatment is Friday at 3:00PM. I can now have a flu shot and will get that on Friday. Also, Dr. Dana said I can get my teeth cleaned again and made that appointment. Also, sad to say but the drugs are really effecting my eyes. My vision is so blur. I made an eye appointment for next week to get that checked. I have reading glasses everywhere. I am having trouble writing checks at the store and can't even see the number ringing on my cell phone. So sad how these drugs cause other problems such as blur vision, weight gain, hair growth, cancer, bone problems and much more. But I need them to keep my body from rejecting my beautiful shared heart and I will do whatever it takes to prevent that.


It's 10:30PM and hopefully taking Decadron today I won't be up wired at 2:00AM. If so, I have made a list of things to do. All the cabinets are cleaned so I can't do that but decided to work on my photo albums and my Italian tapes. So I hope for sleep tonight.


Remember enjoy those moments that take your breath away!


love,
Debbie

To My Donor Family With Love

Jazmin

Two Families,

Each unknown to the other,

Yet bound together

Forever and irrevocably

By a golden chain

Whose links are

Love, unmatched generosity,

And indescribable gratitude.

Today is forever burned

Into the memories of both families.

One will remember with sadness

The tragedy which took their loved one.

The other will remember with joy

The gift which gave their loved one back to them.

AH! That wonderful gift!

The gift of Life!

Praise be to God

For families who can, despite their grief,

Give to others so they might live.

You are my donor family.

I am the recipient of your love one's heart.

How can I ever say "Thank You"?

I pray for you every day

And thank God for you every day.

May God bless you and keep you;

May he comfort you and strengthen you.

This is my prayer for you

My wonderful donor family.

I will always carry you in my heart.