Christmas Time

Christmas has never been my favorite holiday. As a child some were good and some were not. Once I had children I realized its all about the kids. Then again after the boys left home it wasn't so good.

Christmas 2010 has been the BEST! Of course my outlook is different and I cherish each and every moment but this year I decided to do things I haven't done in a while.

The first thing I decided was because I have a new grand son I wanted to make this year special for him and our family.

I decided to make my gingerbread house again. Not only a house for me but one smaller one for my grandson, Mark and my two little sisters, Angelina and Ashanti. We had so much fun. Evelyn and Ben came to visit and stayed the night with me. The girls spent almost 2 hours decorating their little gingerbread houses. I told Evelyn this will be our tradition each year for Christmas.

The next day we went to Snoopy's Ice Rink to see the lighting of the Christmas tree. The girls met Alex, The Snow Queen who is a friend of Maxwell's. She introduced Charlie Brown and Woodstock to the girls. I think they had alot of fun!

Little Markie and I decorated his gingerbread house the next day. Mommy and Daddy wouldn't let him eat the icing but Nana put a little on his nose. He sat staring at the gingerbread house and a few times reached out and felt the different things on his house. Next year will be more fun!

Last night on Christmas we spent the time at Mark and Erin's house. I made my traditional ham, scalloped potatos, gnocchi, and fruit salad. Everything was so good and the day was so fun. Little Markie was the star attraction. He wasn't feeling good and has more teeth coming in but he was still a good little guy. Sissy Mary and the girls came over too, including Nana. We had a wonderful Christmas. I hope everyone had a blessed one too!

Love,

Debbie

I'M BACK!!!!!

Hi Everyone, yes I'm back! I'm sorry if I worried anyone but life, no I mean time just has gone by fast. It makes me realize how quickly time does go by. It's been two years since heart transplant and I was given a second chance at life. So what has been going on!


In November Mark and I traveled to Detroit Michigan to visit Maxwell and see him play hockey. Maxwell left in August and moved to Port Heron Michigan to play for a junior team in the North American Hockey League called the Port Heron Fighting Falcons. We stayed with the coaches Ernie and Shane in a little vacation cottage on the Lake Heron. It was so beautiful. One day it snowed on the lake. We had so much fun and it was so relaxing. We got to see Max's team win their first game at home. Max is living his dream of playing hockey! We are so proud of him.

Puck and Mia

Mia

Little Markie

As everyone knows in July we moved out of our main house and into the small apartment which was the recreation room. I am loving it! As you can see it is very small but at this time in my life I need simple and small. I can't handle a lot of things at once and the main house was alot to take care of. Mark and I are enjoying our small little house. It gives us more time to do the things we love to do. I am very happy!!!!!

In October I took my little sisters Angelina and Ashanti to Disney on Ice. It was the first time they had seen a Disney Show on Ice. I remember taking my boys to see the show. It was another moment to remember. I know Jazmin was smiling from heaven!

DAD AND LITTLE MARKIE TAKING A NAP AT THE LAKE ON LABOR DAY

"TEAM MOMENT IN TIME" 2010 AMERICAN HEART ASSOCIATION HEART WALK

SEPTEMBER 19, 2010

What a fun day! My family and friends were with me on the 2.5 mile walk around Spring Lake. I was a guest speaker and told my story about how exercising save my life. Together we raised over $1,500.00 for the American Heart Association. What a moment in time!

Time Sure Goes By Fast

Great Grandma Douglas and Little Markie

Great Grandma Salvato and Little Markie

I can't believe I haven't written on my blog for weeks. Time does go by fast.

On September 26th it will be two years since heart transplant. Wow did that go by fast! I'm so blessed to be hear enjoying life. To think two years ago I only had 30 days to live. Does that put things into purspective. I had my first big heart test on August 18th. Thank God everything was perfect. Dr. Sandy Warren said everything looked good to him. The test was to see how the heart handled stress. Because my nerves in my new shared heart are not connected to me I don't feeol stess in the heart or what's really weird is that I would never feel a heart attack. No nerves! They gave me a drug infusion and raised my heart beat to 154. The heart reacted perfectly and then came down when the drug was lower. Felt weird laying perfectly still and having your heart go up to 154 beats and having it feel like it was going to come out of your chest. Weird! On September 7th is the next round of big tests, heart biospy, right heart carterzathion, clinic, xrays, labs and who knows what else. Mom and I will be staying in San Jose the night before and I have to be at Kaiser at 7:00AM on Tuesday. Then we have to race back to Santa Rosa for chemo at 5:00PM. What a day that will be. I will do anything to protect my beautiful new heart.

New pictures of Little Markie are at the top. He will be 5 months old on September 6th. 5 months sure has gone by fast. I get to watch him every Monday. We have such fun. Just Markie and Nana. I have been taking him for walks to the park. He loves it. Especially watching the kids playing on the play structures. His little head moves from left to right and back again just watching them. Its so cute! I love looking into his eyes. He has the most beautiful blue eyes. He seems to just stare at you with those deep blue eyes. It's such a moment when he just lays there still and looks into your eyes. A moment that takes my breath away!

This weekend is Labor Day and we will be at the trailer all weekend. What fun! We have our big party on Saturday with a DJ. The park provides all the food and we only have to bring a dish to share. Lots of food, music and fun all night. I can't believe Labor Day is already here. Like I said time sure goes by fast!

I also wanted to mention the North Bay Heart Walk for the American Heart Association. I looking for donations of at least $25 and or come walk with me on September 19th. at Howarth Park, Santa Rosa. They will have food, music, drinks and games for the kids. Come and support my team "Team Moment In Time". To donate look up the website http://www.northbayheartwalk.org/and click on to find a team "Team Moment In Time". It will be a fun day for all.

Have a wonderful weekend!

Love,

Debbie

TEAM MOMENT IN TIME

COME JOIN MY TEAM! TEAM MOMENT IN TIME FOR THE AMERICAN HEART ASSOCIATION "HEART WALK" ON SEPTEMBER 19TH.

I NEED AT LEAST 10 VOLUNTEERS TO WALK WITH ME AND FUNDRAISE. MY GOAL IS $1,000.00. THAT'S ONLY $100 PER WALKER. HELP ME RAISE MONEY FOR THIS WONDERFUL ORGANIZATION.

THE AMERICAN HEART ASSOCIATION CONTINUES TO SUPPORT RESEARCH TO FIND CURES FOR HEART DISEASE AND STROKE. WITHOUT THEIR SUPPORT WHERE WOULD I BE. THEIR SUPPORT HELPS GRANT MONEY TO RESEARCHERS LOOKING FOR CURES TO MANY DISEASES AFFECTING THE HEART. MY BEAUTIFUL SHARED HEART BEATING INSIDE ME WOULD NOT BE BEATING TODAY WITHOUT THE RESEARCH TO PERFORM A HEART TRANSPLANT. I HAVE A SECOND CHANCE OF LIFE BECAUSE OF THE DONATIONS TO THE AMERICAN HEART ASSOCIATION.

VISIT MY PERSONAL WEB PAGE AND SIGN UP TO WALK OR DONATE TO HELP REACH OUR GOAL. THE WEB SITE IS www.northbayheartwalk.org. GO TO THE LINK FOR FIND A TEAM AND PUT IN OUR TEAM NAME : TEAM MOMENT IN TIME.

IT IS GOING TO BE A FUN DAY FILLED WITH FOOD, DRINK, PRIZES AND MUCH MORE! BRING THE KIDS TOO! LOTS OF GAMES TO BE PLAYED.

COME AND MAKE THOSE MOMENTS THAT TAKE YOUR BREATH AWAY!!!!

LOVE,
DEBBIE

Exciting News!!!

I'm so excited about my next moment in time. Through all the moments in time since my illness, I have always wondered "why me". I don't wish this upon anyone, believe me. But why. As you know, in May I was a model for the American Heart Association Red Dress Fundraiser. I was so honored that they asked me to participate. I am especially honored today experiencing my next moment in time.

Ashlee from the American Heart Association and I met last week to discuss how I could help spread the word not only about heart disease but Amyloidosis. I will be speaking at fundraisers and most importantly I will have my own team to fund raise for.

Last August, my friends and family were very generous in supporting the fundraiser to raise money to purchase Jamae and Jazmin's headstone. It was a special moment and believe me when I saw the headstone for the first time it took my breath away.

I know there are alot of special causes out there today and everyone is asking for donations, especially in this economy. This organizations need our help. Without the American Heart Association research and development would not be at the level it is today. They also support the "START!" program. This program encourages everyone to walk or do some type of exercise at least 30 minutes a day.

My mission in the work I will do for the American Heart Association is to get the word out not only about Amyloidosis but to be healthy. I believe if I was not working out twice a week with my personal trainer, doing Jazzerise and Pilates and walking, that I would not have realized there was something wrong. It would have been too late for me and I wouldn't be here today writing this post. I recovered quickly from the heart transplant and stem cell transplant because I was in good shape. After these procedures and still today, I am working out with my personal trainer and walking. If I can do this "why can't you". You never know when an illness will strike and to be in the best shape as possible will help you recover. Take care of your body. Live to enjoy every moment. That is my message!

So I need everyone's help. Not only for fundraising but to walk with me on September 19th here in Santa Rosa at Howarth Park. It will be a fun day for all. Fundraising is important but your support in walking for this cause is also important.

I also need help to name our team. I would like to include the words "heart" and "moment" if possible. I thought of the name "Team Moment in Time". What do you think? I have to register ASAP, so the name of the team is very important. Thanks for your help.

I had chemo today and received my numbers for the month. Two months ago my lambha light chain count went down to 80. I was so excited. Then the next month they went up to 124. Oh that was not good. Even so, when I received a telephone call from the specialist at Stanford asking why. I told her I was sick and only could do one treatment of chemo that month. So today, the number was 129. Slightly up from last month but consider stable. That is why this disease is a rare and fatal one. You never know when it just goes hay wire. I will probably be on chemo the rest of my life unless i can stabilize the numbers to their lowest point closer to normal count of 26. I pray for this everyday. Other than the normal aches and pains associated with my disease, chemo and the drugs I take, I'm doing good. I am watching my grandson, Markie, every Monday and enjoying him so much. He really knows who I am and that makes me feel so good. I thank God and Jazmin's family for giving me this time with my new grandson.

Remember to make every moment one that takes your breath away. I try to do so everyday.

Love,
Debbie

Crazy Two Weeks

It has been absoluately crazy! Last weekend we moved out of our big house into our little house. We converted the "bar room" into a two bedroom apartment. The big house rented very quickly and we are thankful for that.

Our new little house is adorable. Our very close friend, Rob Brown, who is very talented when it comes to construction, built me a beautiful home!!! I feel so good in this little house. Yes there are things that the big house had that this doesn't but who needs 10 closets. I want to live life simple and enjoy the time I have.

God gave me a second chance of life. I don't want to spend it worrying about how to pay the mortgage, medical bills and utiities. I want to enjoy life. I can't continue to stress over the small stuff like bills. Life is too precious!

I want to spend my time with my family especially with my new grandson, Markie. I get to watch him every Monday. What a special moment for me! Today was so fun. Mark and Erin had errands to do, so I told them to bring Little Markie over. We played for hours. He slept in my arms and what a feeling that was. He is so cute! Growing very fast too. He weighs almost 16 pounds now.

Mark and I have been working so hard on our little house. There are still alot of little things to do. I have made up a "honey do" list for Rob. He just loves it when I say, "Rob can you do this or that".

I also want again to say thank you to Gary and Debbie for their kindness during this project. I won't say what but believe me they are my "angels". They worry so much about me and I can feel their love. We are leaving Monday for Los Angeles to visit Kathy and a few other clients. I'm so excited because we are staying at the Montage in Beverly Hills. I'm taking Mom with me and little Mia too. We haven't been there since last October. It will be a very relaxing three days. We do have work to do like taking clients to lunch and dinner but to spend time in that beautiful hotel will be wonderful. Tuesday we will meet Kathy in Long Beach and Gary is taking us to the Montage in Laguna Niguel. The restaurant and bar overlooks the ocean and is suppose to be so beautiful. I can't wait to see it!

Hopefully when I return Rob will have most of the little things completed in my little house. I'm so excited about my pantry door. I always wanted the etched glass one that said "pantry" on it. It came in yesterday and hopefully he can put it on before I get home on Wednesday. Tomorrow I will spend the day working on my "inspiration wall". I found a picture frame with my favorite saying "Life is not measured by the number of breaths you take but by the number of moments that take your breath away". Around this picture frame I'm going to put all my favorite pictures of my family, friends and the places I have been to. It will be so special everytime I walk into my little house I will see pictures of the people, places and things that take my breath away. That is what life is all about!

One place I feel at home is my little trailer on Clear Lake. It will be another 2 weeks before we can go up. I can't wait. I miss it!!

Quick health update because I don't want to spend my time thinking about my health. The lambha light chain count went up to 124. Very disappointing but I only had one week of chemo last month because I was sick and maybe that was the reason. Also, I have had a lot of pain in my butt/hip area. They did an MRI and found cysts and one disc bugle. The nuero surgeron refused to operate on me because of my heart transplant and said he couldn't help me. Some doctors feel the pain is from all the statins for chlorestrol I take. I have stopped some of them and hopefully things will get better. So far not so but its only been a week. I can't exercise which is driving me crazy and at night I'm in a lot of pain. Other than that I'm doing quite well. I need more rest and relaxation after moving. Hopefully when I get back from Los Angeles things will be complete and we can start to enjoy our little house.

Have a wonderful weekend and enjoy every moment!

love,
Debbie

Thank You for Your Love and Support

Dear Family and Friends, I want to thank you so much from the bottom of my heart for the beautiful gift you have given to me and my donor family. Evelyn, Jazmin's Mom and I will never forget your kindness. The headstone for Jamae and Jazmin, as you can see, is absolutatly beautiful. I finally got the chance to see it for the first time on Thursday. As you know, my favorite saying is:

Life is not measured by the number of breaths you take, but by the moments that take your breath away!!!

Seeing the headstone for the first time, took my breath away. This could not have been possible without the support of my family and friends.

Love you all so very much,

Debbie

The Cutest Baby on Earth

Little Markie came to visit tonight while his Dad helped Papa Douglas carry the sheetrock to the little house. I was so happy to see him. I haven't seen him since last Monday because I have been sick. He too got sick and now Mom Erin is sick. I don't know if it was me or not but I feel terrible that they got sick. Hopefully everyone gets better soon!

He is growing so fast! He is smiling and cooing! It is so cute. I'm so happy to have him in my life. These are moments that take my breath away! Looking into his eyes and seeing this beautiful baby makes everything I am going through worth it. I want to be here to see him grow!

Love,

Debbie

Monthly Light Chain Count

The month has really gone by fast. I really enjoyed my cruise to Alaska and to be honest didn't think about being sick or what has happened this past year. Only the fact that I had to take all my pills each day did the past year and a half come to mind. Coming home and facing the daily, weekly and monthly demands to take care of this body. This includes chemo, doctor appointments and blood work.

Part of taking care of my body is to have monthly blood draws to check lambha light chains. In May as I reported, my lambha light chain count finally went below 100 to 96.5. I took the test this month on June 8th and Monday received the results. 80!!!! Can you believe it? 80!!!! I was so excited I jumped off the table and gave Dr. Akthar a big hug. On Tuesday, I met with Dr. Schrier at Stanford University for my checkup. Dr. Schrier is the Amyloidosis specialist at Stanford. He was happy with my results but is still very cautious. I asked again for a break from chemo and Decadron. The answer was NO! He said that there are a total of 75 patients being treated at Stanford with Amyloidosis. Only three have had transplants. Of course those three are Dr. Kevin, Yolanda and myself. He said each patient is different in type of
light chain (Kappa vs Lambha) and how we respond to the types of treatment. Some patients are on Decadron/Velcade or Decadron/Revlind or Decadron/Malvalyn (spell?). He said all of us are responding differently. He feels I should continue with my current treatment until my numbers are the lowest possible. The normal range for lambha light chain count is 5-26. I feel he is right that I should continue until the count is as low as possible. I can't take the chance of it going up after doing everything I possible can to get low. I don't want to face another stem cell transplant because my count is out of control.

Yes, I'm disappointed that I can't have a break but I'm also very blessed that my count is still going down. There are many others out there who have not had the same results and are fighting for their lives. I have to remember this is a fatal rare disease. It can turn on you at any time and destroy organs.

My life has changed but I'm still here enjoying moments. Moments that take my breath away. Moments like seeing my little grandson smile for the first time, enjoying my cruise to Alaska, spending time at the trailer with friends. Thank God for these moments!

What's happening today. Well, I'd like to get over this cold I have had for over two weeks. Wow this is awful! Being immune suppressed it takes my body time to feel better. I hate being sick. I can't see my little grandson and I feel terrible. I'm also having problems with my back. Today I saw a doctor who has ordered an MRI. She thinks I have tissue damage which is causing the pain. The pain is so bad it wakes me up in the middle of the night. Hopefully, nothing is wrong but I have to wait until the results of the MRI. Just one more thing! This is what I'm talking about. I just wanted a break from everything!

Enjoy every moment!

Love,
Debbie

ALASKA CRUISE

Hi Everyone. Back from the cruise to Alaska. What a beautiful cruise. If you have not been on a cruise, you are missing out. Look at these pictures. It will take your breath away! Take it from me, go and make memories that take your breath away!

Mark and I Just Before We Sailed Away


Sailing out on the Ocean. Is this Heaven!!!!



The first Iceberg I saw. Look at the blue color!




Blue Iceberg!

Is This Beautiful or What? Look at all the icebergs. Look at the big glacier in the back. Took my breath away!

Can you believe how many icebergs are here?

The ship and Me. Can you guess who's bigger?

Sailing in the ocean. Look how smooth the ocean is! This picture taken from our veranah.

The Glacier at the end of Glacier Bay. Can't see too good in this picture but it is blue.

Awesome!!!!

Iceberg with a bald eagle on top.

Mark with the glacier behind him in the distance.

Me on the top deck with the icebergs in the distance. This ship was 10 stories high.

Doesn't this take your breath away!

What a beautiful day on the ocean to go whale watching. It was 75 degrees, no wind with flat ocean. In the distance, a hump back whale's tail. We saw so many whales and otters.

Ship docked in Ketchikan, Alaska. I tried to get the whole ship in the picture to show you how BIG it is. This ship is 86,000 tons with 1900 passengers. Sebourn Legend which I have cruised on to Italy, France, Spain and the Caribbean is 11,000 tons with 200 passengers. This was different being on a big ship. Holland America was wonderful and we enjoyed the cruise.

Ketchikan, Alaska's First City

Santa and Me

Sorry the picture is sideways. Couldn't get it to turn. This is the eagle at the entance of Ketchikan.

Ketchikan, Alaska

Did you know that the towns of Juneau and Skayway are land locked. You can only reach them by boat or seaplane.

I have so many more pictures to share but these are my favorites. I had a wonderful time and can't wait to go again. This was just what the doctor ordered!

Love,

Debbie