Debbie Douglas Moment in Time

Moments from Heaven!!!!

2011-12-15T06:43:00.000-08:00

PROUD DADDY HOLDING HAILEY LEE DOUGLAS

BORN DECEMBER 8, 2011

6 POUNDS 14 OUNCES

20 INCHES LONG

ERIN AND HER BEAUTIFUL BABY DAUGHTER

NANA AKA NONNIE

HAILEY

AND OF COURSE A VERY PROUD NANA

SORRY CAN'T FIGURE HOW TO TURN PICTURE

I AM SO BLESSED TO HAVE TWO BEAUTIFUL GRAND CHILDREN. THANK YOU GOD FOR THE BEAUTIF UL GIFTS AND MOMENTS!!!

LOVE,

DEBBIE

THIS IS WHAT LIFE IS ALL ABOUT!

2011-12-06T21:03:00.000-08:00

Lots going on right now. I'm on grand baby watch. Hailey is due on the 15th and Erin is already showing signs of delivering early. I can't wait. A little boy and now how blessed am I to have a little girl too!

This past weekend I spent time making my gingerbread houses for Little Markie, Hailey, Ashanti, Angelina and me. Last night Little Markie stayed and decorated his little house. It is so cute. I worked on Hailey's house today and mine. I made Hailey's house in pink, cause pink is for girls. Spending this time with Little Markie decorating his house was a moment that took my breath away. I was so excited when he would say "right here" was where he wanted to put something. So cute! He was very patient and sat there with me and Mommy decorating his little house. What a moment!!!

This Sunday, Evelyn, Ben and the girls are coming to decorate their gingerbread houses. I went to the Disney store and bought the girls the "princess figures". They are going to be so excited. Another moment that will take my breath away!

As for my health, this past month the Lambda light chains went down to 102. Four months ago I was at 179 and Stanford was getting nervous and put me on chemo every week. I have no breaks which means I'm sick (nausea) Tuesday and Wednesday and then on Thursday the soreness and fatigue starts. By Friday I'm so sore and fatigue. The doctors are saying its because the chemo treatments are building up and the effects are getting stronger. I don't see Dr. Schrier (Stanford) until January and hopefully he will give me at least a one week break. That would be so great!

On December 29th, in Pasadena California, Evelyn and I will put a rose in honor of Jazmin on the Rose Parade Donate for Life Float. It will be a special moment for Evelyn and I and will be a moment that takes my breath away! Evelyn and I will be staying at my favorite hotel the Montage in Beverly Hills. I'm excited to show her the places I have been to and of course we will do alot of girl things like shopping, people watching, more shopping and lots more people watching. I told her we can just sit in the library (aka living room) and watch the people go by. She is really looking forward to this trip and so am I. I will be able to see Kathy and Denise at Youngs Market too! Its been almost 2 years since I last saw them. I miss them so much!

On October 8th I became a Donate for Life Ambassador for the California Transplant Donor Network. I plan to make presentations at the High Schools encouraging young adults to donate. One question? Do you have a pink dot? The pink dot is on your driver's license. Please, please donate! There are 9 million donors in the state of California. As impressive as having nearly 9 million people registered sounds, about 70% of adults still have not yet made a decision themselves as donors in this state. I believe there are about 12,000 people still waiting for an organ. Why! 9 million is not enough. Bear in mind, to be a donor you have to be considered "brain dead" and "in a hospital enviroment" and that is where the problem lies. How many donors who die are "brain dead". Not many, so the more donors there are the chances are higher for someone waiting for an organ. I was blessed and thank God for Jazmin's mom, Evelyn in making the decision to donate. Jazmin save a lot of lives including mine. Jazmin was not a donor but Evelyn made the decision for her daughter. What a miracle and what a special person she is. I will do everything possible to honor Jazmin. She was too young to die but she saved so many lives. She is an angel in heaven!

Well the next news with pictures coming soon will be my new baby grand daughter "Hailey"!

Remember: Every moment is a gift!

Love,

Debbie

PS: To an old friend who commented on my blog. Thank you for your prayers and thinking of me. Enjoy every moment! Make moments that take your breath away! I try each day to do just that!

Sorry for Being Gone For So Long!!!!

2011-11-01T21:40:00.001-07:00

Strip District In Pittsburgh

Famous Prumanti Bros. Sandwich Restaurant

You're in Steeler Country

Steeler Country

Great Seats - 5 rows up from the field

The Ketshup Bottles Open and Pour Out when the Steetlers Score

The fans go all out for their Steelers

T
The Steeler Hall of Fame Wall

Erin's Baby Shower 10-23-11
It's all about PINK!!!!

Baby Cash and Auntie Mary

Hailey's First Toto

Erin and Tory

Thank you so much Tory for the beautiful baby shower

My Pride and Joy

Little Markie

It's November 1st and I can't believe its been 5 months since my last post. So much to say and so much to show.

Well all the good news first! I am going to be a grandma again. A beautiful grand daughter, named Hailey Lee Douglas is expected into the world sometime between December 5th and December 15th. Everyone knows how much this means to me. To be a grandma again is the best moment of my life. Little Markie is now 19 months and is such a joy. I watch him every Monday and the moments I spend with him are so precious. I can only imagine how it will be with two. I dream about her almost every night. I hope she looks like Erin, although in my dreams she does. Erin's girl friends gave her a baby shower and I got to go out shopping for the first time for girl clothes. Yes I went crazy. I told Erin when she brings Hailey over to stay at Nana's house be sure to bring at least 5 changes of clothes so I can play dress up. Little Markie is now saying words like "please" "baby" "bubbles" and many more. I think he says "Nana" but it comes out kind of funny. I know he loves me by the way he looks at me. His little eyes stare at me and when he sees me he runs to me and gives me hugs and kisses. I'm the happiest Nana on this earth!!!!

I haven't done much traveling since the big motorhome trip. Just short trips to the lake and in October Mark and I went to Pittsburgh to see the Steelers and Penguins play. I had sooooo much fun! The people are sooooo nice. Mark was so excited to show me all the places he visited in his last trips. It was just what we needed. I hope to go every year!

I'm excited the fall and winter months are coming because this is my favorite time of the year to be at the lake. There is no one there and I can walk all around with my puppy. I drop Mark off at his favorite place ie: casino and I have the day to myself. It works for both of us. I spend my time watching Burlesque, Under the Tuscan Sun, Sex in the City and more for at least the 20th time. I swear I see different parts each time I see them over. I read my "food network" magazines, which I really enjoy. I have even been doing so many different recipes. Max and Mark are really loving it. I made a Cocoa Pork on Sunday with Cole slaw and BBQ sauce. Mark loved it. It gives me peace to cook for my family. I enjoy it so much!

As for my health. I'm stable at this point. I was really having a hard time with my lambha light chain number. It was going up (172) and Dr. Schrier was getting concerned. He decided I would have to go on chemo every week, take the steroid every week and have it injected into my stomach called sub-que instead of infusion into my arm. He said they were having much success with sub-que. So two months ago I started the new treatment plan. My numbers have dropped from 172 to 128. I have had some side effects that are good like my numbness isn't as bad and the nausea isn't as bad too. I still have the side effects at the end of the week like I have the flu but by Saturday its all gone.

I had my 3 year annual heart biopsy in September. I had a NER (no evidence of rejection) and no amyloid in my new shared heart. They also check my arties for any blockage and there was none. So my biopsy was very positive except I ended up in the ICU for three days. The doctor had a problem during the biopsy where the sack around my heart was punctured and I started bleeding inside. They rushed me to ICU and thank god they knew what to do it didn't cause any damage to my new shared heart. I have had terrible pain since then on my left side near my heart. They have done CT scans, Echo Scans and blood tests. All have come back negative and the heart is functioning great. The pain they think is from the doctor inserting the cath for the drainage of blood after the biopsy. Maybe he did something to a muscle but I can tell you this that at the beginning of the week on Tuesday the pain was gone and by Thursday it was back. The pain was so bad I couldn't breathe and was so worry about the heart. We discovered that when I went on Dexadron that the steroid helped with inflammation and by the time Thursday came the drug was gone and the pain was back. So now I'm on 40 mg of Dexadron on Tuesday and starting Thursday on 30 mg of Predisone with taper. The pain is gone but for how long I don't know. I was so depressed after the biopsy because I was feeling great a month ago. I have to be strong and continue with my treatments. I am having surgery next Thursday on my finger which I have a piece of glass in it, what fun! I have been seeing annual doctors for exams like eyes, skin and on November 15th I will have a bone density test. I keep falling and they want to be sure my bones are not weakening. Every waking moment is devoted to taking care of this body. My sweetheart husband has been such a positive force in my life. All he asks is "are you happy". He goes out of his way to do little things to be sure I'm happy. It's working!!!!

This month is my favorite holiday, Thanksgiving. We will share Thanksgiving with the family at brother and sister, Joey and Rachel's house. It is so much fun and this year we have new additions to the family. Joey's daughter, Shannon gave birth in April to Cashious (Cash). He is so cute and is just now sitting up and cooing at us. Little Markie will be into everything (food I mean) and just 8 months to go for Anthony and Laura's wedding. I'm so blessed to have such a loving and caring family. I'm going to enjoy every moment.

Please enjoy the pictures and I can't promise to update more cause I'm out there "ENJOYING EVERY MOMENT!!!

Love,

Debbie

PICTURES

2011-06-03T17:45:00.000-07:00

MIA'S POSITION THE WHOLE TRIP

MIA ENJOYED PLAYING WITH THE SQUIRRELS ON THE BEACH IN CRESCENT CITY

LIGHTHOUSE IN CRESCENT CITY

HOME!!!!

CAMPSITE ON THE BEACH IN CRESCENT CITY

CAMPSITE IN KLAMATH FALLS

CAMPSITE IN BURNS, OREGON

MARK'S ATTEMPT AT BBQ - CAUGHT THE TOWEL ON FIRE. WHERE DID BOB GO, MY BBQ MAN!

WARMING UP THE BUNS!!! OR SHOULD I SAY BURNING THE BUNS!

HAMBURGERS WERE GOOD!

END OF THE ROAD

2011-06-03T17:16:00.000-07:00

Wow can't believe how fast 17 days goes by. That should be a lesson to me. Time is short and live life each and everyday.

I have had a blast even with the problems we had this past week. I spent precious time with Bob and Cindy Keyes. It was the best! I enjoyed their company and will never forget the moments we had together.

Today we left Klamath Falls, Oregon for Crescent City. It took about 4 hours to get here. We are staying the night in a RV Park right on the beach. It is beautiful to look out at the ocean and the waves. The park isn't the best but it has all the hookups including WIFI and cable.

Just dropped Mark off at the casino up the street and I will join him about 8PM for dinner. I have a little quiet time and of course he enjoys the time playing at the casino. Mia is so tired because Mark and I walked the beach and she ran after all the little squirrels hiding in the rocks on the beach. The squirrels are very friendly but we stay away because I'm afraid they will bite. The weather is nice with little sun but warm. I guess the rain is coming and that's why it is warm outside. We will leave early around 7 in the morning back to Santa Rosa. We have a 5 hour drive home and we have lots to do. The tow dolly must be returned and the motor home cleaned. It will be nice to be home!

I have lots going on at home this next week. First and more importantly is lab work and chemo. As I said before I left, I met with the doctor from Stanford and my numbers have been going up and they want to be more aggressive with treatment. So starting next week I will take chemo 3 times a month. I'm not looking forward to that because I'm getting sick, sore and tired from the chemo now. That means 3 times a month or 3 weeks out of 4 I will be sick, sore and tired. I hate it! I appreciate the time I have had these past 17 days. I didn't think about my sickness, chemo and doctor appointments. All I thought about was how lucky I am to see the places I saw and spend time with Bob, Cindy and of course Mark. But now back to reality! I know I should be happy I have been doing well. I know life is precious and each moment is a gift!

I look forward to more time seeing new places. I don't know if it will be with a motor home but I will be traveling more. This summer I plan to spend as much time as possible at the lake. I feel so good when I'm there and now having chemo so much I want to relax and enjoy it.

I have all these thoughts of wanting to scream out and say "Enjoy life and live for every moment". I hate hearing someone tell me "oh I always wanted to do a motor home trip". No don't say, "always wanted to" DO IT!

I'm happy I did it!
Love,
Debbie

ON THE ROAD AGAIN!

2011-06-01T19:41:00.000-07:00

Well we are on the road again with a new motorhome after the transmission in the last one blew up. This motorhome is newer than the last and so far so good. We left Pocaletto, Idaho this morning about 9:30AM after spending almost an hour moving our stuff from the old motorhome to the new one. What a mess! We lost a day but to be honest it was nice to spend a night in a really nice hotel. The bed and shower was great!

Mark and I just threw everything into the motorhome and took off. We had at least a 7 hour drive to Burns, Oregon. We stop in Ontario, Idaho to see Mark's sister, Jennifer at work. We couldn't spend too much with her because she was working. She also had a cold so I couldn't get too close to her. She is so stressed about her husband Paul and it shows. I feel so sorry for her.
I wish there was something we could do but Paul is in God's hands now. They are hoping UC San Francisco will treat him and will know soon. They will have to travel from Idaho to San Francisco or his treatment. My prayers go out to him and Jennifer.

We arrived at Burns, Oregon about 5:30PM. We gained an hour which today I needed it. I'm really tired. After we got set up with the hookups, Mark and I worked on getting the inside of the motorhome in order. Now we are sitting here watching the Stanley Cup game and BBQ our hamburgers for dinner. The weather is wild. Thunder, lighting and heavy rain for about an hour but now it is so beautiful with bright sunshine. It is very cold out but we have a heater that works great. We are going to eat and watch TV. Tomorrow I have to do laundry before we leave for Klamath Falls, Oregon. We have a 4 hour drive to Klamath Falls and want to leave by 10:00AM to get there by 2:00PM to have time to rest and relax. The past few days have been so stressful and hopefully that is over.

I miss my little grandson Markie and can't wait to see him. I hope to see him on Sunday. Mark said he is teething again and is really crabby. I hope he will still remember me. The day before I left I went to visit him and when I was getting ready to leave he stood at the little window next to the door just watching me leave. It was heart breaking to see this little guy standing there watching his Nana leave. Since I have been gone all I think about is seeing him standing there at the window. He is so cute!

I can't believe my trip is almost over. I saw two cars today with cute sayings on them. One said "Are we smiling yet?" and the other one said "Road Trip" and had their route pictured on the back window of their car. That's what life is all about. Start living life and enjoy every moment. I have done alot of thinking while on this trip. I plan to live life and that includes making more moments that count. I want to spend more time at the lake house especially with little Markie this summer. I want to take him fishing and feed the ducks. Every moment is a gift!

Love,
Debbie

DO WE HAVE BAD LUCK OR WHAT?

2011-05-31T18:43:00.000-07:00

RV PARK IN JACKSON HOLE, WYOMING

RIRIE LAKE IN IDAHO

TOW TRUCK DRIVER CHRIS TOWING THE MOTORHOME TO THE FORD DEALERSHIP

Well its Tuesday evening about 8:00PM in Pocatello Idaho. Not the destination we intended for today.

We were on our way to Twin Falls, Idaho only 2 hours away when the transmission in the motor home blew. Smoke and fire poured out of the engine underneath the motor home. I quickly stopped the motor home and jump out. We were both afraid the motor home was on fire. So, we were towed to a Ford dealership to have the transmission checked out. The technician agreed the transmission was gone and that it needed a new one. Cruise America arranged for an exchange of a new motor home but unfortunately the new one won't be here until 10 or 11 tonight. Then Mark and I have to empty the old one into the new one. We decided to stay the night in a hotel for the night because Twin Falls is 2 hours away.

The Ford dealership recommended a hotel in Chubbuck, the Ramada Inn. We checked into the hotel and quickly checked out. It was disgusting and looked so unsafe we couldn't stay there. I checked online (thank god for the Internet and that I brought my lap top) and found a beautiful Best Western Pet Friendly. We are here for the night and will leave early in the morning for Burns, OR.

We will stop in Ontario, OR to visit with Mark's sister, Jennifer at her work. We were planning to visit her in Weiser but Jennifer and her husband Paul received terrible news this week. Please pray for them. Paul was diagnosed with pancreas and liver cancer. I just want to see her and give her a big hug.

I have to say I'm ready to go home. We were so relaxed today cruising down the freeway to Twin Falls. Yesterday we spent the entire day in the motor home because it was raining all day. I BBQ in the rain and was it cold. So today we were looking forward to spending time outside in the sun relaxing at the RV park in Twin Falls. Now we have added expenses we just did not count on ie: hotel, gas, food, etc. Cruise America is going to hear from me!

We are only 12 hours away from home and will be home on Saturday. I missed Yellowstone and Crater Lake but will still be able to visit Crescent City on the ocean and the redwoods.

I have to remember that each moment is a gift and today is a gift.

Love,

Debbie

WHAT A NIGHTMARE!!!

2011-05-30T11:53:00.000-07:00

DRIVING IN THE SNOW

LAKE IN THE GRAND TETON NATIONAL PARK

SNAKE RIVER IN THE GRAND TETON NATIONAL PARK

I WOULDN'T SAY WE WERE WELCOMED

CAN'T REMEMBER WHAT THE TOWN NAME BUT THESE WERE SO CUTE

BEAR LAKE

SNOW CLIMBING THE MOUTAIN TO THE GRAND TETON NATIONAL PARK

All I can say is yesterday was a nightmare or as Mark said, A Day From Hell. It actually started out great except for dropping Bob and Cindy off at the Salt Lake City airport to fly home.

We had a wonderful week together. I'm so happy to have spent this special time with them. I have so many memories that I will cherish forever.

After dropping them off at the airport, Mark and I packed up the motorhome and started our journey to Yellowstone National Park. All day we dodge the weather. Some places it rained and some pkaces it was beautiful until we reached Yellowstone.

As you can see from the pictures we went from hot desert weather to cold snowy weather. What a change? I know we live in the most wonderful place on earth. We get bad weather but nothing like what we saw yesterday.

So we continue towards Yellowstone going through the south entrance on our way to the west entrance to our RV Park Grizzley Bear RV Park. We were about 47 miles from the RV park deep in Yellowstone when it started snowing and I mean snowing. I'm driving towing my little bug and it was a mess. All of a sudden we look ahead and a big bus is turning around in the middle of the road and we see the road is closed. The ranger at the station we paid $25 to said nothing about the road being closed and let us go over 50 miles in the snow only to have to turn around and go all the way back to Jackson for the night. We were coming down the hill from about 6,900 feet snow everywhere in the pitch black. Not only did we have to worry about the weather but also the wildlife on the road. We saw hundreds of elk on both sides of the road. I have never been so scared in my life. Finally after 2 hours of this we made it to Jackson, Wyoming again. It was 10:00 PM nothing open except McDonalds and I have not taken my meds yet. I couldn't eat but only bites to get my meds down. The worst was to come.

We had no where to go. The only RV park in Jackson was The Virginian and it was closed. We drove around and decided to sleep in the parking lot of a bank. I never closed my eyes. My stomach was aching from the stress and I was so scared someone would bother us. It was a nightmare!

Both Mark and I couldn't sleep and finally felt better when the sun came up. We went to the gas station and filled up gas and propane. I waited till 8:00AM to call the RV Park to see if we could stay there. George was great. The park checkin was 1:00PM and I told him my nightmare from the night before and he allowed us to checkin early. We immediately went there, I paid and Mark set up the motorhome. By the time I got back to the motorhome everything including the TV was working. It was warm and cozy. I felt much better. I made breakfast and we sat and decided our destinations for the rest of the trip.

Also, on top of all that the dining area window blow out while driving and now we have no window. It's 43 degrees out right now and it will be 29 tonight. We have the heater which, thank God, works. We can't do anything until Tuesday because of the holiday today. Just one more thing. I don't know if someone is trying to spoil my fun but it's not working.

So now I have checked the road and weather conditions and our plans have changed. We will not be going to Yellowstone or Crater Lake. Both places call for snow and I'm done with that. So we are going to Jerome, ID Tuesday; Burns, OR Wednesday; Klamath Falls, OR Thursday and Crescent City, CA on Friday; Home Saturday. We decided to cut our trip short by one day to get home and unpack, clean motorhome and relax in our home.

Trust me it has been wonderful and I will never forget the moments. But there is no place like home. I can't wait to go home! I especially miss my boys, Erin and little markie. I can't wait to see little Markie. I got him so many cute little things from the places I visited. Maybe someday I will take him and my newest grandchild on a trip like this. First comes the lake. I want to take him to the lake house and take him fishing and feed the ducks. I plan to spend almost every weekend at the lake. Sun and fun!

Please enjoy the pictures! Remember every moment is a gift!

Love,

Debbie

HOME IS WHERE YOU PARK IT!

2011-05-28T14:07:00.000-07:00

LAKE POWELL

KOA GLENDALE UTAH

OUR OWN BRYCE CANYON AT THE KOA

ZION NATIONAL PARK

Home for us has been Yosmite, Laughlin Nevada, Grand Canyon, Zion National Park, Bryce National Park and now Salt Lake City.

On Thursday we went to Zion National Park. Again such an unbelieveable place. The cliffs with rock formations looked like layers on top of layers. We left late in the afternoon to go to Zion. It was Bob's birthday and we planned to have dinner in a little town called Springdale. The KOA we stayed at said a restaurant called Bit and Spur was good. We drove through Zion stopping to take pictures. We had a wonderful dinner at Bit and Spur. The weather was great and we sat outside watching the locals go by. Cute little town right in the middle of this national park. The people who live in Springdale or beyond have to go through the national park to get home. How beautiful that must be to see each day. We then drove back to the KOA just when the sun was setting. One unique spot in the park is the one mile long tunnel cut right through the mountain. That was incredible. Next day we are up early and on our way to Bryce which is only an hour away.

Cindy and I left first in the bug and drove to Bryce. The boys followed in the motor home. Cindy wanted to stop in the little towns on the way for shopping. We stopped in Old Town Bryce and did some shopping.

Bryce was absolutely beautiful. Mark was tired of looking at rocks so he stayed and dog sit Mia. Cindy, Bob and I took the little beetle and went to Bryce. It was so different then Zion. Zion had more cliffs with rock formations layers of rock. Bryce had rock formations called "Hoodoos" everywhere. These Hoodoos went straight up to the sky. It looked so pre historic. I was waiting for dinosauers to come out somewhere. Both places were awesome.

We have had a wonderful time! Weather has been beautiful. Today it is a little cloudy in Salt Lake City but warm. We have a beautiful site in the Salt lake city KOA park. Full hookups including TV and WIFI. I didn't even take a picture of the last place we stayed at called Ruby's Inn RV. The site was terrible. Dirt with no WIFI and cable. The bathrooms were miles away and crowded. We couldn't wait to leave that place. The shopping for Cindy and I was great. We found lots of treasures to bring home.

Tomorrow sadly but Bob and Cindy fly home. It has been such a wonderful time with them. I so happy I was able to experience these wonderful places and make special moments with them. I can't wait for the next trip. We all agree now it is "lake time". We want to enjoy our trailers at the lake and make moments to remember there.

Mark and I will be traveling to Yellowstone National Park. I will hopefully post when we are at Yellowstone but have to wait to see if the place we are staying at has WIFI.

Hope everyone has a blessed Holiday Weekend. Say a prayer for our troops every where in the world.

Love,

Debbie

2011-05-25T19:37:00.000-07:00

Today was truly a day I will never forget! The saying I like the most "Life is not measured by the number of breaths you take but the number of moments that take your breath away". Today was that day!

We started our day at 9:00AM at the Grand Canyon Railway. We had reserved seats in the luxury car at the back of the train. It was terrific! What a way to spend the day. The train left Williams AZ at 9:00AM for a two and half hour drive up the mountain to the Grand Canyon. We sat in luxury with a continental breakfast, drinks, coffee and orange juice. We had a great rail car assistant named Carol who was a kick. She told us jokes and was so much fun. Oh as I writing this blog, the train goes by blowing its horn. Didn't sleep much last night because at 2 or 3 in the morning one came through the town blowing its horn. Can you believe that? It was great! I was so afraid Mia would start barking at it. She didn't but seem a little confused as to what that was.

Anyway, our day started with a pleasant and comfortable ride to the Grand Canyon. We arrived there at about noon. The walk to the Grand Canyon Rim I have to admit was pretty hard for me. It was many and I mean many stairs to get from the depot to the rim. I did it but my heart was pounding. Then it happened. My first sight of the Grand Canyon and it differently was "A moment that took my breath away". It almost seems unreal when you first see it. I thought it looked like a painting. I'm so happy I was able to see it. I will never forget this day!

We had a wonderful lunch at the El Tovar restaurant overlooking the Grand Canyon Rim. It was then time to get on the train for the ride back. Again we were in the luxury car and had wonderful appetizers and drinks including champagne. I had sparkling cider to celebrate a wonderful experience. All of a sudden the train stopped and would you believe "train robbers" boarded the train. They came to our car and rob us. The sheriff quickly came through the door and hauled them away. It was so fun!

I hope you enjoy the pictures. Please don't say "someday" you want to go to the Grand Canyon or Yosemite or somewhere else. Do it today! You never know how many todays are left I'm not living that way anymore. I'm going to live life!!!!!

Love,

Debbie

GONE!!!

2011-05-24T21:37:00.000-07:00

CO-CAPTAINS RIDING SHOT GUN
LITTLE TRUCK ON ROUTE 66

ROUTE 66

BOB NEEDED EXTRA LIGHT TO SEE THE BBQ

OUR CAMPSITE AT LAUGHLIN NEVADA

On the road in Laughlin Nevada. Long drive to get here and I won't say it is my favorite place. But you know who is loving it! Stayed out late last night at the casino. He's in fine shape today. HA HA! We left today at 4:00PM on schedule and arrived in Williams AZ. The Grand Canyon Railway Resort is beautiful. The property is absolutely immaculate. Tomorrow is a busy day.

We have a train ride to the Grand Canyon. Luxury box car to the Grand Canyon including breakfast, cocktails, private bar with outside platform to walk out on. This is going to be lots of fun! I'll have pictures tomorrow night to share.

I can say this "I can certainly get use to this life real fast". Having a blast!

I'm enjoying every moment.

Love,

Debbie

We are going to the Grand Canyon on a train for the whole day. I'm so excited to see it.

GOING PLACES WITH SMILING FACES

2011-05-22T21:04:00.000-07:00

MARK'S ATTEMPT AT TAKING A PICTURE OF ME

TOMORROW WE WILL GET THE OTHER HALF

First day on the motor home trip. 16 days to go! Our first stop was in Columbia. We stayed at a RV park called 49er RV Park. The oldest RV park in California since 1853. It is awesome. The owners were so kind to us. The moment we pulled in with our rented "Curise America" RV they came running. Do you need help? Is this your first time RVing? We said "no". We can do it! Shortly thereafter, while the owners were watching every move, Mark and Bob started taking the little bug off the tow dolly and forgot to undo the chains. Mark started backing the bug off the trailer and they both notice (Bob) that the chains were still hooked. We are popular in the RV park because everyone thinks if you rent one of these Cruise America RVs that you are from Europe or beyond.

Drove today to Yosemite topless ie: little red convertible bug. It was a beautiful drive to Yosemite. The scenery was absolutately beautiful. Mark enjoyed every single tree he saw. Oh including the 10 or 15 waterfalls we saw. I enjoyed every single moment in Yosemite. I'm so happy I was able to see this beautiful part of the country.

Enjoy the pictures! More fun times to come!

Love,

Debbie

Tomorrow on the road to Laughlin Nevada. Mark is so excited and will be bonding with a slot machine. Cindy and I will be shopping! More things for the grandkids. Bob will be shopping for a new pyrex dish for me because he cracked and broked mine.

What's New!

2011-05-18T18:57:00.000-07:00

This past week was a rough one. I had chemo on Tuesday and then met with Dr. Scherir at Stanford that afternoon. My lambha light chain count went up from 75 to 141 and of course he is very concerned. I'm always sick, tired and sore after chemo each week. So what does he recommend three weeks a month of chemo with one week off. I'm not happy but what choices do I have. That means three weeks each month I feel awful. Not the quality of life I want!
I asked if I could wait until I return from my vacation to start the new treatment plan and he agreed. So the first week of June I will start the new treatment and hopefully my numbers will start to come down again. I was so excited when they went to 75 but its like something inside of me (a monster) keeps telling me that he has control and I have to keep fighting. It is so hard to keep up the positive attitude when you are faced with this each and every day.

Now I just want to go away for these 3 weeks and enjoy every moment. I really need the time away. We are going on a 17 day motor home trip with Bob and Cindy Keyes. They will be with us for the first 9 days and then its me and my hubby alone for the rest of the trip. We are visiting Yosemite, Laughlin NV, Grand Canyon, Bryce, Zion, Salt Lake City, Yellowstone, Weiser Id (Mark's sister), Crater Lake, Grants Pass and then to the coast in Crescent City and home through the Redwoods. It is going to be a beautiful trip and one I have wanted to do for over 20 years. I feel so blessed to have seen such beautiful places like Italy, Spain, Alaska, the Caribbean but this is going to be so very special. I will be bringing my lap top and will share photos and updates along the way. So look for updates. We leave on Saturday and return on June 6th.

I also have the most special news to tell, I'm going to be a grandma again. Mark and Erin are expecting baby #2 in December. I'm so excited to have more grandchildren. Little Markie is the love of my life. I watch him every Monday and it is the best day of the week. He is why I keep fighting along with my family who love me so very much. I'm so blessed.

Well I will update on the road starting Saturday.

Remember: Every moment is a gift!

Love,
Debbie

Lots of News to Tell

2011-05-02T21:27:00.000-07:00

Plenty to Drink
Pool and Spa

View of the golf course

Little Markie's First Easter

Well my first big and I mean big news is that I'm going to be a Grandma aka Nana again. Mark and Erin are expecting baby #2 in December. I couldn't be happier. God bless them all!

Easter was a fun time. Little Markie had so much fun. He did great during the Easter egg hunt. We spent the morning at Erin's Mom's house and it was so much fun. Jeff made a great brunch and it was nice spending time with family.

In the afternoon we went to Scott and Linda's house for their traditional Easter day fun. I love going there to see the kids and meet up with friends. This year Mom came with us and Max, Mark, Erin and Little Markie too. We had so much fun. Little Markie watched the kids running around, painting their faces, hunting for eggs and playing on the jumpie. His little head just was turning from one side to the other. It was so cute. He cried when it was time to go.

This past weekend I had a Wild Women's Weekend in La Quinta. Diane Long my friend from Chico and her sisters, Terri and Cindy invited me to join them in the desert for a women's weekend. I had so much fun! Terri's home in the desert is absolutely beautiful. It felt like a resort. I had my own bedroom with a beautiful bathroom. We spent the time laying in the shade (i can lay in the sun anymore) swimming, eating, drinking water (i can't drink wine anymore too) going out to dinner and much more. I spent all day Saturday visiting Uncle Sal and Aunt Sue who live there. It was fun talking about my early childhood. They were so nice to me and they have a beautiful home. I can't wait to spend time with them this summer. Mom and I will plan a trip to visit. I had alot of fun and thank Terri, Cindy and Diane for asking me to join them. They were wonderful!

Mark stayed home and put in my lawn. My little backyard is beautiful! Pictures to come!

This week watching the Sharks go on to the next round. GO SHARKS! This weekend we will be going to the Giants game on Saturday and maybe take a Sunday drive to the lake.

My other big news is that I will be fulling my big dream - taking a motorhome and see the United States. I will be leaving on May 20th through June 6th. Our friends Bob and Cindy will join us the first 9 days and Mark and I will finish the trip ourselves. We will be seeing Yosemite, Laughlin NV, Bryce, Zion, Salt Lake City, Yellowstone, Visit Mark's sister, Bend, OR, Crater Lake, Crescent City and on the way home we will follow the Avenue of the Redwoods. What a trip! Of course I will be taking my lap top and camera and will post each day all the fun stuff we will do and see.

It's about making every moment count because "Every moment is a gift"!

Love,

Debbie

LIVE-LOVE-LAUGH

2011-04-18T09:39:00.000-07:00

SPENDING MOMENTS WITH TIPPI MARKIE LOVED HIS BIRTHDAY CAKE

MARKIE PLAYING IN THE SAND AND WATER TABLE

MY LITTLE BUG (MIA TOO!)

These words are so important in my life - LIVE-LOVE-LAUGH!!!!

This past month has just flown by. Markie's first birthday was so much fun. Mark and Erin had over 60 people there for an afternoon lunch and celebration. It was so fun! Little Markie was so good. He played with his little friends in the sand box and I know he was loving it.

I took my blood count for lamhba light chain and this past month it went up again to 106 from 75. This disease is so frustrating. The doctors say I'm stable because basically I'm in the 100s. I want it down close to the normal range. Most patients experience up and down counts and some eventually have problems with other organs. I just hope and pray it stays in the 100s and I can enjoy more LIVE-LOVE-LAUGH!!!

Happy Easter to all!

Love,

Debbie

The Best News Ever!!!!

2011-03-18T07:30:00.000-07:00

Markie giving love to his new friend
"Sooo big"

Markie's new friend "Monkey with the big heart"

Markie cleaning out my utility drawer

Nana and Papa with Markie

Yesterday was a sad but also a happy one too! As for the sad part. My Aunt Jeannie passed away on March 11th. What a strong and brave lady. Sitting at the memorial service yesterday brought back so many memories of my childhood. Coming to Sonoma to visit auntie jeannie and uncle jake and my cousins was so much fun. They lived in the country and had all the fun things to do like riding horses and riding motorcycles. We always looked forward to our visit with them. Auntie would make these wonderful dinners and the adults would play cards all night long. The kids would stay outside as long as possible playing. Happy memories of my childhood. I wish auntie jeannie peace and as Sister Diane said, I look forward some day (a long time from now) to visit her again in her new "home".

Now for the best news ever! I finally after so many months got my lambha light chain count down to "75"! That is the lowest ever and I'm so happy. I also had a heart biopsy last week and I had just a mild rejection but the other good news is that there is "no traces of amyloid in my new shared heart". That is the best news ever! I have to protect my new heart and that's why I will continue to take chemo and do what the doctors say. I am so blessed!

I spent the weekend at the lake and had a very relaxing time. I just love my little place. The lake is so full. Its almost over the stone wall and on to the grass area. We should have a wonderful summer with the lake at full. I'm looking forward to summer. The rain is good but I'm so tired of it.

I brought a almost new 2006 red convertible bug. I had a bug in 2000 and love it. So in keeping with our commitment to change our lives and live simply, I decided I don't need to impress anyone with a fancy car and decided to buy a Volkswagen bug. It will be fun having a convertible again but I will have to be very careful in the sun. Most of the drugs I take cause skin cancer and of course so does the sun. So going topless will have to be kept to a minimum. I don't know what it is about these cars but it makes me smile. If you look closely the front of the car is smiling!

I have been watching Little Markie every Monday. I'm so happy to have this special time with him. He is just now starting to walk and will be 1 year old on April 6th. Wow has time passed so fast. Mark and Erin are having a big birthday party for him and it will be a special day.

Maxwell is finishing up what we call a "very rough hockey season". He was traded 3 times and currently is playing in Chicago for the NAHL Chicago Hitmen. We don't know if he will return to the team or have to try out some where else. It is his decision and we will support him. This time off he has to continue training which also means I have to feed him lots. He has to gain weight while he is at home. It will be my pleasure to fatten up my little guy (all 6'3" of him).

The next month of so Mark and I plan to enjoy our little house on Clear Lake. This pass weekend when we went was the first time in 6 weeks. I don't want to wait that long anymore especially with this terrible weather. We installed new windows last year and had a problem with one window leaking. Mark caulked the outside before we left the last time we were there but who knows if it worked. So Saturday when we arrived the first time we did was check for leaks. No leaks! The weekend when it snowed up there and it was a very heavy wet snow it caused alot of damage including trees down. The big redwood tree in front of our trailer is now balded. It lost about 23 branches. We have a better view of the lake but lost some of our shade too. Thank God no branches hit our trailer. So Mark and I will leave again this weekend and spend time there. The big storm this weekend knocked out the power to most of the trailer park except our area. I don't understand how people close up their trailers at the end of the summer and don't come back until the next summer. It is an investment and I want it to be maintained. To be honest I love it up there in the winter more than the summer. There is no one there and we have the park to ourselves. I can walk Mia around and not worry about someone complaining. We take long walks to the lake and sit and watch the ducks. It's my heaven on earth!

Enjoy the pictures and remember "Nothing is worth more than this day!"

Love,

Debbie

WOW WHERE DID THE TIME GO!!!!!!

2011-02-24T13:59:00.000-08:00

Sissy and Cher

"he said, thanks baby"

I am so amazed at how fast time goes by. I know I have been very busy but its been almost 3 months since I wrote on my blog.

Well where do I begin. Christmas was wonderful with my family and especially my little grandson Markie. We had Christmas dinner at Mark and Erin's house. Little Markie was in full swing. Opening presents and eating all of our favorite holiday food. It was a beautiful day!

Mark and I have been working on our little place and its finally to a point where it is definitely a "home". I love the small and cozy feeling it gives me. I don't even think about the big house next door. It is so funny how that can be but it is the truth. The boys in the house are so sweet and kind. They are family to us. I am blessed to have them in our home.

My yard is looking so beautiful. Mark brought me a beautiful fountain outside our bedroom door . It makes the most beautiful sound of water dripping. I can hear it in my kitchen with the window open. I can't wait to finish the backyard with the grass and trees. I'm also going to have a small little area for little Markie to play in. Nana and Papa want to get him a swing set too! I look forward to the summer nights BBQ outside on our new patio.

January and February I spent most weekends traveling. Maxwell left Detroit at Christmas break and was traded to Fresno. Can you believe that! Well he was there for about a month and was traded again to Chicago. He is playing for the Chicago Hitmen. He will be there until the end of March and then home for the summer until the season starts up again in August. He will have to train and stay in shape to play next year. Next year will be his last year and hopefully he will get a college scholarship to play hockey and attend college. We pray for that! I spent a few weeks in Fresno watching Max play and visiting Auntie Babe. It was a fun time!

February 4th Sissy Mary and I went to Las Vegas for our once a year trip. This time we saw Cher. She was terrific! We stayed at the Bellegio at this time we got a room overlooking the lake with the fountains and the Las Vegas strip. Sissy and I watched the fountains while we drank coffee and ate chocolate treats. We shopped, relaxed and went to dinner at Spago's. Our favorite is to have dinner and breakfast in the room. The room service at Bellegio is great! Next year we plan to see Celine. I have seen her before but Sissy hasn't so she is so excited to see her. Sissy went to see the Beetle show again "love". She went by herself and had a wonderful time. She is so funny how much she loves the Beetles. Enjoy the pictures!

We have been going to the lake house but not as much as I want to. The weather has been so bad. Last weekend we were planning to go and it was snowing so bad. The park looked like Tahoe. Jeannie the manager called to let us know that we have a better view of the lake now that 23 branches fell off the big tree in front of our trailer. No damage to the trailer, thank God. I don't want anything to happen to my little place. This weekend it is the same thing! SNOW! The weather forecast said snow at 500 feet in San Francisco. Can you believe that? So we are staying home again. Last weekend we painted and decorated our bathroom. This weekend we have a few small projects to finish. We are having dinner with Bob and Cindy Keyes to plan our motor home trip route. Our trip is in May and we will start at Yosemite. I have never been to Yosemite. We are going to the Grand Canyon, Zyon, Brice, Lake Havesu, Yellowstone and to be honest so many wonderful places. I have always wanted to do this and we are going to be gone for two weeks. Bob and Cindy will be with us for the first week and then Mark and I will be alone the second. I'm looking forward to spending time with him and of course Mia gets to come too! I couldn't go for two weeks and leave my little girl home. No Way!

The last few months have been hard. I have lost two friends from this horrible disease we share. I know they are not suffering any more but miss them. It only makes me realize how precious life and time is. Don't waste it worrying about the small stuff. Take care of yourself each day. That includes eating, exercising and not abusing your body with drugs, drinking and smoking. Why waste this day! My favorite new saying and I have it on my wall in the spare bedroom is "Nothing is Worth More Than This Day". Isn't that the truth? I feel like I preach this but I know how precious life is and it could be gone today. Don't waste a moment of it!

Health wise I'm doing ok. I have a heart biopsy scheduled for March 8th at Heart Transplant in Santa Clara. Its been 6 months since my last one. Although I have enjoyed not doing those every month the long time in between can be scary too! I had a few weird things happen to me and of course I think "oh no" my beautiful heart. Something is wrong! But no I'm ok. I do have chemo still every two weeks and today is my crash day. Feeling the soreness and just low. This will last until Saturday and then I have a two week break from chemo. I celebrate those two weeks and enjoy every moment.

My beautiful niece Shannon is pregnant and we are going to her baby shower next weekend. She is having a little boy. Little Markie will have his first baby cousin. What fun we will have at Thanksgiving with the two little boys.

I'm sitting watching the rain hit the swimming pool. Looking for snow! Where is it?

Enjoy the pictures and especially enjoy this moment!

love,

Debbie

Christmas Time

2010-12-26T16:30:00.000-08:00

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!!!!!

2010-12-15T12:18:00.000-08:00

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

2010-08-31T19:58:00.000-07:00

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

2010-08-11T22:10:00.000-07:00

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!!!

2010-08-03T20:16:00.000-07:00

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

2010-07-17T21:46:00.000-07:00

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

2010-07-07T21:32:00.000-07:00

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

2010-06-17T21:45:00.001-07:00

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

2010-06-16T22:02:00.000-07:00

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

2010-06-01T17:58:00.000-07:00

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

Waiting at Vancouver Airport

2010-05-29T13:07:00.000-07:00

It's Saturaday morning and we are waiting here at the Vancouver airport to fly home. Just got off the boat this morning. The cruise was wonderful and I had a great time. Hopefully this weekend I will be able to post pictures. I have so many beautiful pictures. We had beautiful sunny weather the whole time we were gone. They say that is so unusal for Alaska and it usually rains everyday. We had bright sunshine every day. I love those days sailing on the ship when the weather is so beautiful. Thursaday was one of those days. We went to Glacier Bay that day and the glacier was bright blue from the sun beating on it. It is so beutiful. I have pictures. I am doing well and have a wonderful trip, It felt good to be back on a cruise sailing on the ocean. I love to cruise!

Hope you have many moments that take your breath away. I had many this week.
Love,
Debbie

Cruising to Alaska

2010-05-19T21:07:00.000-07:00

So excited to be leaving on Friday for my cruise to Alaska. We will fly to Vancouver on Friday to spend the night and board the ship on Saturday. I'm so excited. It's been 2 years since I've been on a ship cruising. I love being out on the ocean, especially on sea days. It is so beautiful. The only thing about this cruise is that it will be very cold. The weather in Alaska has been about 50 degrees. Not very warm. I'm not going for the weather but to see the sights and animals. I also want and need to rest. These past few weeks things have been really crazy. I have had so many tests, xrays and blood draws. Yesterday it was awful. I waited 2 hours to take an xray on my back. Oh the xray took less than 5 minutes. That was crazy.

The ship called my travel agent, Bernice and offered us an upgrade to a cabin one level up. I can't believe how beautiful our suite on the ship is. We have our own private veranda, a sitting area, double sinks in the bathroom, separate shower and tub including a whirlpool tub. I think because it will be cold we will be spending alot of time in our room. I have been getting up at 3 in the morning for the last few nights and I have been looking online at the ship. I know where every thing is and plan to see it all. The ship is so big and I have never been on one that big. Sebourn Legend is only 200 passengers and this ship Holland America is 1800 passengers. This will be different but I'm not complaining. I'm going to love it!!!!

So I will have pictures and lots to tell when I return on the 29th. I'm sure there will be many moments that take my breath away and I plan to enjoy each and every one of them.

Love,
Debbie

Heart Biopsy and Other Tests

2010-05-12T22:05:00.000-07:00

AMERICAN HEART ASSOCIATION RED DRESS FUNDRAISER
MATT, MARK AND ROB TAKING JET SKI OUT OF LAKE

MATT AND ME

WHAT A MOMENT!

"MY MATT"

MATT AND CUPPY AKA CHOPPY

ME AND MARION ENJOYING THE MOMENT

MARK PLAYING LADDER BALL

MATT AND CUPPY SUNTANNING

LITTLE MARKIE

IS HE CUTE OR WHAT?

PAPA MARK AND LITTLE MARKIE

My 4 month heart biopsy was yesterday. Monday Mom and I spent the night at the Fairmont in San Jose. Debbie and Gary joined us and we had lunch with our liquor receiver, Rick Cole at the Grill on the Alley. We had a wonderful lunch. That evening we met Ron Ableman, credit manager for Sysco Foodservice for dinner. I haven't seen Ron in a few months and it was so good to see him. We had dinner at Morton's Steakhouse and of course it was a great dinner.

I was so anxious worrying about the heart biopsy the next day. I have been suffering with pain in my joints and right hip. The hip pain has kept me up at night and I haven't sleep very well. That night I took Decadron and it kept me up. At 3:00AM I decided to get up. Mom and I had a beautiful suite and so I went into the living room and watched a movie. I saw "Dear John". What a great movie. I cried from the start to the end. You must see this one! Mom woke up around 5:00Am and we had breakfast in our room before we had to get to Kaiser by 7:00AM. It would be a long day. Heart biopsy at 7:45AM; clinic at 10:00AM; support meeting at noon until 1:30PM and then off to chemo in Santa Rosa by 4:30PM. Wow was I tried last night.

Today I received all my test results. The first and most important was the best news. I FINALLY WENT UNDER 100 FOR MY LAMBHA LIGHT CHAIN COUNT - IT WAS 96.5. I'm so happy to see it below 100, especially that the number of chemo weeks have been decreased from 3 to 2 and Decadron lowered from 40mg to 20mg. The treatment is working. Thank God!

My heart biopsy came in at a 1a/1r heart rejection. I was hoping for another NER (no evidence of rejection) but this is a slight rejection. The doctors are not concerned. They did xrays on the hip and there is nothing wrong. They think it could be the statins I'm on causing joint pain. They asked me to take more pills called Q10 which helps with inflammation. Hopefully it works.

I realize my life is going to be maintaining this body. It is like a job each day. I have to do things to stay healthy and strong. I have alot to live for.

Last Friday I got to be a model for the American Heart Association Red Dress Fundraiser. It was so much fun. I got to pick a beautiful dress out, get my hair and makeup done too. I met so many wonderful women who have had open heart surgery too. No one there who had a heart transplant but we all shared the same feelings. It was a beautiful moment!

My Sharks have made it to the third round of the Stanley Cup playoffs. We have waited for this for so many years. GO SHARKS!!!!

Hope you like the pictures. Of course there's pictures of Little Markie, the trailer and spending time at the lake, the Red Dress fundraiser and more. Hope you enjoy them.

Update on the headstone for Jazmin and Jamae. I'm happy to share that the headstone was finally installed last Saturday. It is absolutely beautiful. Evelyn went to the cemetery and took a picture with her cell phone. I have to figure out how to get it on my blog or when I get to see it in person I will take a picture and share with everyone. All I can say is thank you for all who donated. Seeing that picture took my breath away! Evelyn told me that Jazmin's dream has been fulfilled. I know she is smiling and her heart is very happy. I can feel the love!

Next week I will leave on my cruise to Alaska. I'm so excited to finally be able to go on vacation. It will be a relaxing trip. I'm excited to see the scenery and be on a ship in the ocean. There is a great feeling being out there at sea. I expect to make moments that take my breath away.

Go out and make moments that take your breath away! That is what life is all about!

love,

Debbie

Little Markie Pictures

2010-04-28T21:57:00.000-07:00

Daddy and Markie

Uncle Max and Little Markie
Max says he will be on skates by the time he is 2

Unlce Matthew and Little Markie

Let's See Uncle Matt and Little Markie racing cars!

M
Mommy and Little Markie

What a cute little face!!!!

Nana and Little Markie

I can't tell you how happy holding this little guy in my arms makes me feel. He has brought so much love and happiness to our family. He is truly a blessing!

Enjoy the moments!

love,

Debbie

What's Happening!!

2010-04-21T09:22:00.000-07:00

Well where do I begin. I have been busy, doing what I don't know. Each day I feel like I'm doing the same old thing and that drives me crazy! Get up, go to the office, come home, do laundry and cook dinner, watch TV, go to bed and then start all over again the next day. Boring and not the way I want to live life.

This experience has taught me some lessons. Live life as through its your last day. Enjoy each and every moment. I try to enjoy moments each day but how do you enjoy laundry, cooking dinner and cleaning. Well I guess that's life. I try to enjoy my moments on the weekend especially when I get to go to the trailer. This last weekend we went up on Saturday morning early. It was absolutely beautiful there. The weather was about 75 degrees. We went to a birthday party that afternoon for Jerry who turned 50. The best part was Jerry is a musician and he brought together his old band from 30 years old to play together. It was a great moment to watch these 50 year old men play to their hearts content. As I listened I watched their faces and how happy that moment was for them. I have to say it brought tears to my eyes to know that they were enjoying that moment together playing and singing for us. Thanks Jerry for that special moment!!

This weekend I get to watch Little Markie on Saturday night. I only get to see him about once a week. So Saturday will be a moment I will enjoy. Erin is doing great and so is Little Markie. He goes to the doctor for the first time tomorrow and we will see how much he weighs. Mark is guessing about 8 to 8 1/2 pounds. He is sooooo cute but then again I'm his Nana and what else would I say. I look forward to many more days spending time with him making moments to remember.

Update on the headstone. It's getting closer. I received a call yesterday from Beverly at Bras and Mattos Monuments and she said the engraving is being done now. The installation will be within the next few weeks. I'm hoping before Mother's Day. After installation we will hold a small memorial at the grave site with my family and Evelyn's. It will definitely be a moment that takes my breath away! I have dreamed of this day for so long and I can't believe its finally here. I thank all my family and friends for making this moment come true.

I am so excited. I was asked by my onogolist, Dr. Akthar, to participate in a fundraiser for the American Heart Association Red Dress Campaign. It will be held on May 7th. I will get to have my makeup done and a new red dress from Banana Republic. I will be speaking about my story and that makes me feel so good. I have wanted to share my story with the public and have sent many emails to my local newspaper and even Oparh. No one has responded back, so maybe this is a way to get the word out. It's a great cause and I'm happy to help.

Well I need to run. Off to the gym and then to lunch with a client in San Francisco. I'm glad I get to see my clients from time to time.

Have a wonderful weekend and make memories that take your breath away. Sorry I don't have photos of me and Little Markie but I don't have my camera right now. Maybe I can get some this weekend to share.

Love,
Debbie

Mark Aaron Douglas

2010-04-10T16:55:00.000-07:00

MARK AARON DOUGLAS

BORN APRIL 6, 2010 AT 9:54AM

7 POUNDS 15 OUNCES

21 INCHES LONG

DADDY AND LITTLE MARKIE

GO SHARKS!!!!

THE NEXT JOE THRONTON IN THE MAKING

Wow what a week it has been! Seeing my grand child for the first time was a moment that took my breath away. I don't think there could or will be another moment like this. I will cherish it forever!

Mom and baby are doing great. Erin is a wonderful Mom and I can already tell that little guy thinks she is "special" and so do we. It's so cute how he looks for her when he hears her voice. It is so amazing to watch. To see the love in her eyes for this little person takes my breath away.

As for my son, seeing him as a father was the proudest moment in my life. I felt so proud to be his Mom and experience this moment with him. He is so happy to have Markie here. He looks forward to those moments he will spend with his son at Home Depot, planting in the garden and of course going to a Sharks game. He will be a wonderful Dad!!!

To hear myself say to Little Markie, "Hi Sweetie, it's Nana" was so awesome. For years I have dreamed of becoming a grandma or to be called "Nana". Finally that moment is here. When I look into his eyes I think about how much my life means now. A year and half ago if it wasn't for my family, friends, doctors, my donor Jazmin and her family I would not have been here to experience this moment. I thank God for the blessings in my life and for my grandson Mark. I know what life is about. It's about living and enjoying each and every moment you have on this earth. So enjoy life! I plan to spend as much time making moments that take my breath away with my family and friends.

Enjoy this moment!!

Love,

Debbie

Just Call Me "Nana"

2010-04-06T21:44:00.000-07:00

My little grandson was born this morning at 9:54AM. He weighed 7 pounds 15 ounces and measured 21 inches long. His name is Mark Aaron Douglas. He is absolutely beautiful!!

My wish came true today! A year and half ago, I met with the heart transplant doctors to find out I needed a new heart or I would die in 30 days. Some of you might not have known this fact but I had only 30 days to live. Thank God and thank you to my donor family and Jazmin for saving my life and giving me this moment. Without them I would not be here to celebrate these moments in time.

Tonight I went to the hospital for a quick visit and got to hold Little Markie for the first time. But first the moment that took my breath away was walking into the room and seeing my oldest son, Mark, holding his son in his arms. What a moment! To hold little Markie in my arms made me feel "FREE". I felt like a hundred pounds was lifted off my shoulders. I feel so good inside.

I want to thank my daughter, Erin for the beautiful grandson. She did so good today. She started her contractions about 5 this morning and had little Markie just before 10:00AM. She was amazing! I quickly said to her "you did so well, when is the next one coming". Just kidding!
I want to enjoy Little Markie and make moments with him.

I will have pictures to share as soon as I get my camera back from Mark. I got to the hospital and Mark said he forgot the camera in the car. I said "Here's my camera". So I have to wait and get pictures then. Oh but I heard my sister, Kathy has already posted his picture on her facebook. Thanks sissy for doing that! I know there are so many people (friends and family) that have waited for this moment. Everyone knew how important this was for me! I remember being taken to the operating room the night I had my heart transplant and telling the doctors to just keep me alive long enough to be a "grandma". Thank you to those doctors at Kaiser and Stanford for saving my life!!

This is the most wonderful day of my life and one I will never forget.

Love,
Debbie

THE ART OF WAITING

2010-03-31T18:26:00.000-07:00

Waiting! I don't know about you but I hate to wait for anything. I hate waiting for the computer to start up, waiting in line at Starbucks drive thru and I especially hate waiting for my little grandson to be born.

Well 11 days from tomorrow and waiting! Erin is doing great! She goes to the doctor tomorrow for a full checkup and hopefully we will know how soon we have to WAIT!!! Markie said the other day, with all the technology why can't they tell when the baby will be born. I agree.

They are ready and yes "Waiting" for little Markie to be born. I thought to myself how fast these nine months went by. I'm sure if you asked Erin she would disagree. But I also realize how fast the years go by too. I thought, "it will be two years this September, I received my heart transplant". The years go by!!!

My heart is so full of joy knowing in just a week or so I will be holding my little grandson. I prayed to God each day I was sick that he would give me time to become a grandmother. I remember when I was being considered for the heart transplant telling the doctors "Just keep me living long enough to be a Grandma". I'm so blessed to be here today to cherish this moment. To see my son, Mark, become a father will be a moment that takes my breath away and one I will never forget.

Mark and I will be celebrating our 33rd wedding anniversary on Friday. Now where did 33 years go! We are going to the trailer for the weekend and will most likely go to dinner Friday night. We are on call for the baby to be born and will come home the minute Erin goes into labor. On Easter Sunday we are going to Scott and Linda Ford's house. I really enjoy going there for Easter and being around all her grandkids. Oh by the way she has 7. 6 girls and 1 boy. They are the best kids and their parents are too! Linda makes it so much fun. The kids play in the jumpie and hunt for eggs. The food is great and I plan to make my Ravioli lasagna. It will be a fun day!

Next year at Easter we will be celebrating little Markie's first birthday. I plan to spend this next year making memories with him to last forever. For me time is so precious and I don't want to miss a moment. I have dreamed of taking him to the trailer to go fishing, feeding the ducks and taking walks through the park. There are so many people who own trailers there who have been going to the park since they were very young. This is the reason why we brought the trailer to have moments with family and friends. I plan to spend many weekends at the trailer this summer entertaining friends and family. I call it "Memories in the Making".

Have a wonderful Easter. I will post the minute little Markie is born.

Love,
Debbie

2010-03-23T22:02:00.000-07:00

Cousin Nick, Me, Auntie Babe and Mom

Roger Rocka's Dinner Theater
featuring "Oklahoma!"

Auntie Babe and Mom

What a fun weekend! Last weekend Mom and I drove to Fresno to visit Auntie Babe and my cousin Nick. Auntie Babe is my god mother. Sadly my Uncle Nick passed away a few years ago and she has not seen me since my heart transplant.

As a young girl I spent my summers in Fresno with my Mom's parents. My grandparents lived in a great neighborhood and each year me and my brother and sisters would get on the greyhound bus and visit them. I have wonderful memories of my summers in Fresno.

Uncle Nick and Auntie Babe owed the best restaurant in Fresno, called Nicola's. It was famous for its stuffed steak. I only ordered the cheesecake. Chocolate chip cheesecake to be exact. When I passed my real estate broker's test, my aunt and uncle brought me a whole chocolate chip cheesecake to celebrate. I ate so much of it - it was HEAVEN!!

All weekend we talked until at least one or two in the morning about old times. Auntie Babe was so happy to have us there. Her birthday was Sunday and we got to celebrate with her.

On Saturday night she took us to Roger Rocka's Dinner Theater to see the play "Oklahoma!" What a great show. The pre show was the junior company. It consisted of kids from as young as 6 years old up. I never laughed so hard watching these kids sing and dance to their heart's content. It was a wonderful moment. After their performance was the main show "Oklahoma!". Wow these performers were great! I just could not believe that I was sitting in Fresno watching this wonderful performance. Most of them volunteer to perform and are paid nothing. That did not matter they gave a great performance. That night was filled with moments that took my breath away!! Can't wait to visit Auntie again.

Baby Update: Erin is doing great and baby Markie is getting BIG!!! Only 2 and half weeks till due date (April 12th). I can not wait to see my grandson's little face, kiss his little cheeks and just sit and hold him forever. I dream about all the wonderful things we will share with him. I plan to make every moment with him a moment that takes my breath away!!

Friday Mark and I are going to spend with Matthew. He moved into a new home and Mark is going to paint the living room and Matt's bedroom. As we have done each time he moves, we hang all his pictures and help decorate. I'm happy to spend time with him and glad he moved back to Northern California. He is doing great!

After Mark is done painting on Saturday we are driving to the trailer to spend the rest of the weekend there. Mark finished all the projects last weekend and I am excited to see it all finished. He is so tired of working on the trailer for the past month and just wants to go there and enjoy it. That's exactly what we are going to do. Enjoy it!!

I found a book given to me by Erin's Mom about 50 things that really matter. A quote read "Happiness doesn't lie in the objects we gather around us. It lies within us. To find it, all we need to do is open our eyes". Open your eyes and enjoy the moment!

Love,

Debbie

Doctor Appointment at Stanford

2010-03-17T21:06:00.001-07:00

Yesterday I saw Dr. Schrier at Stanford. I was prepared to ask for a three month break from chemo and decadron treatments. I have been suffering from numbness in my feet and hands and soreness after each treatment. Also, extreme fatigue on the third day. It doesn't make my quality of life good.

So I saw Dr. Wittles first and I asked her if I could take a three month break. My lambha light chain count was 109 this month. It has been at the 100 mark for the last 4 months. They think I'm stable at this time and they feel the current treatment is not working to lower it anymore. So what is the next step.

Dr. Schrier did not agree to a three month break. He decided to lower the Decadron dosage from 40mg to 20mg. Also, he decided to decrease the number of weeks on chemo from 3 to 2 per month. Well I would have liked a three month break but I'm thankful for this change. Dr. Schrier said if my numbers start to go up, then everything is back on. He even feels I might have to increase my dosage of Velcade from 2.6 to 3.3 or go on another type of chemo drug called Reviland. I'm not happy about going on Reviland because it has caused or they think it has, heart rejection. Dr. Kevin Anderson had a heart rejection after starting this drug but since he has been on it and is doing quite well. The Mayo Clinic uses this drug and has not had any heart rejections in heart transplant patients with Amyloidosis. It is still alarming and I don't want to take any chances with my new shared heart. So I will have to think about it further. I told Dr. Schrier my concerns and I said I would try the increase in Velcade first. But I hope I can stay stable and ride this out for a few years at this treatment level. Wouldn't that be great!!

Other than all this I'm doing fine. I recently was diagnosed with sleep apea and I am using the CPAP machine each night. Just one more thing!!!! It is helping and I will use it to protect my new shared heart and my other organs. I didn't realize how serious this was. So take it from me if you snore or someone tells you that you stop breathing when you sleep, contact your doctor immediately. This is serious. It can damage your heart, cause a stoke and much more. Please contact your doctor if this describes your symptoms.

This weekend Mom and I are going to Fresno to visit my Godmother, Auntie Babe. Mom hasn't seen her in years and its time to enjoy the moment with her. She is so excited about us coming down. It's her birthday on Sunday and we are going to celebrate with her.

Baby Markie is due April 12th and he is getting bigger each day. Erin is starting to feel things changing and will be going to the doctor on Friday. We will see what the doctor says and when they think Markie will be born. I can't wait for the moment to see my beautiful grandson. It will be a moment that definitely takes my breath away!!!

Update on the headstone. Evelyn spoke to Bras and Mattos and they said they would have the artwork to her next week. They feel the headstone will be complete by next month. I will be so happy to see that beautiful headstone on Jazmin and Jamae's resting place. Those beautiful girls deserved a beautiful headstone. I again thank everyone who donated to help purchase the headstone. I will never forget the love and support everyone gave to us that day.

Have a wonderful weekend. I found this quote and wanted to share with you:

Legends say that hummingbirds float free of time, carrying our hopes for love, joy and celebration.

The hummingbird's delicate grace reminds us that life is rich, beauty is everywhere, every personal connection has meaning and that laughter is life's sweetest creation.

Make moments that take your breath away!

Love,

Debbie

Congratulations Alex

2010-03-07T16:00:00.000-08:00

CONGRATULATIONS ALEX!!!!

Maxwell's girlfriend Alexandria was a contestant in the Miss Sonoma County Beauty Contest last night at the Speckles Center in Rohnert Park. We are so proud of her. She was the fourth runner up in the contest. What an accomplishment! She has been working so hard for the last few months preparing for this night. She has been through alot. The contestants had interviews with the judges, practices for their on stage performance, and many other things to be prepared for this night. I'm happy I was able to be there to see Alex's moment!!!

Weekend in Las Vegas

2010-03-02T17:52:00.000-08:00

SISSY IN FRONT OF THE CIRQUE DU SOLEIL SIGN FOR THE SHOW

THE BEATLES LOVE

SISSY AND I NEXT TO THE LIGHTED WALL FOR THE SHOW "LOVE"

HEATHER AND I OVERLOOKING THE FOUNTAINS

HEATHER, HER MOM MARIE AND ME

FOUNTAINS AT NIGHT!
WHAT A BEAUTIFUL SIGHT!

FOUNTAINS AT BELLAGIO

ME IN FRONT OF THE FOUNTAINS OVERLOOKING THE

EIFFEL TOWER OF PARIS

MIRROR HORSE IN THE LOBBY

THE CEILING IN THE LOBBY AT THE BELLAGIO

IT IS GLASS BLOWN FLOWERS. ITS BEAUTIFUL!!!

SISSY IN FRONT OF THE TIGER SYMBOL FOR

CHINESE NEW YEAR

OUR VIEW FROM OUR ROOM OF THE SWIMMING POOLS

THERE ARE SEVEN!

OUR ROOM AT BELLAGIO

THE BELLAGIO

AT THE AIRPORT!

I spent the most fabulous weekend in Las Vegas with my sister, Mary Ann, for her 50th birthday. We had so much fun as you can see in these pictures.

Friday we arrive in Las Vegas at 3:00PM to check into our room at the Bellgaio. Our room was on the 15th floor overlooking the pools. What a beautiful room. Almost as nice as the one I stay at the Montage in Beverly Hills. Sissy was so excited to be staying in such a beautiful hotel. I never knew how much she enjoyed doing these kind of things. I can't wait to take her to the Montage someday and make moments there.

That night we decided to have dinner at Spago's. What a wonderful dinner. Sissy had braised short ribs and I had a veal chop. The most exciting part about the dinner was meeting the chef, Eric Klein, Associate Partner. I had all my pills and pudding on the table and he came by to ask whether I liked his dinner or not. We joked about having to take all those pills. The dinner was fabulous and he made a special birthday dessert for Sissy. It was definitely a night to make moments.

The next day we walked up and down the Las Vegas strip. Wow is that a long way! We picked up our tickets for the show that night and met our friends, Heather and Marie for lunch at Pf Changs. It was so nice to see them. They are special friends Max met when he lived in Las Vegas. They have been so concerned and always ask how I'm doing. It was so great to see them! Again, another beautiful moment I won't forget.

That night we went to the Cirque De Soiel show, The Beatles, Love. It was the greatest! I'm just so surprised how athletic these performers are. They were flying from the walls, the ceiling and the floor. What a show. Best part it was played to several Beatle songs. Sissy is a big Beatle fan. She cried when the songs started playing. What can I say! Another moment!

This weekend was all about living my life making moments. This is what life is all about. It's not about the money, cars, houses or jobs. Its about making moments that take your breath away!

A quote from George Harrison before he passed "Life goes with you or without you! Think about it. Where do you want to be?

Love,

Debbie

Erin's Baby Shower

2010-02-22T21:06:00.003-08:00

Great Grandma Douglas wrapping the favors
The two Great Grandmas stuffing napkins

Eo Erin enjoying the good food

Mom, Auntie Mary Joan and Auntie Diane and that's not what I called them in Italian

The food table

Becky, Kennedy, Capri and Erin

Erin opening gifts

The Shower Cake

Erin's baby shower yesterday was so much fun! I am so grateful and appreciate all the beautiful baby things she received for my new grandson, Markie. Thank you!

It was truly a moment that took my breath away!!!

I am so blessed to have experienced this moment and can't wait for the day I hold my sweet grandson.

Love,

Debbie

Erin

2010-02-22T21:06:00.001-08:00

What's Been Going On

2010-02-16T20:59:00.000-08:00

Mia

The New Slider Door

The New Living Room Window

The New Kitchen Room (My Favorite)

This is our launch area on Clear Lake

Front Row Trailers on the Lawn Area

Lake Front View with our dock area

The dock area with picnic table to sit and have morning coffee and watch the sun come up!

Awesome!!!!!

Lots of things have been going on. I got my results last week and my light chain count went up to 106. Now that's not a big jump from 102. Doctor thinks maybe I have hit a plateau. We are going to wait another month and see what the results are then. He's thinking either taking me off the Decadron and Velcade for awhile and see how it goes or trying some new treatments. We will have to wait and see.

I was so busy this past weekend at the trailer. Scott put in the last 4 windows, Rob did the trim around the windows and lots of honey dos for me and Mark was busy painting the outside. It was so crazy. Enjoy the pictures above. I love spending time there and I wish you could enjoy it too!

This weekend I'm having Erin's baby shower. I'm so excited. I just went tonight to buy all the decorations. I really bought great things to decorate with. I hope she will be happy. She called today to say how excited she is and looking forward to spending time with everyone. Tomorrow I will go to Costco and buy the food. Auntie Mary is making chicken picata and I will make the ravioli lasagna with Cesar salad. I ordered a fruit basket cake with real whip cream topping. On Saturday we will try again to see little Markie in 3D. Hopefully, he will cooperate and show his face. If all goes well I will have pictures to share too. Only 7 more weeks till her due date and it feels like 7 years. I can't wait to hold him for the first time. What a moment that will be. Definitely a moment that will take my breath away.

I will take pictures at the baby shower and share them next week on the blog.

Tomorrow I will be at Stanford meeting with the bone marrow doctor. I have important tests coming up soon, bone marrow biopsy in June and I know she wants to discuss the stem cell transplant. I think the results I have experienced so far, numbers falling from 341 in February to 106 last month is the result of the stem cell transplant. I will share her thoughts after my appointment tomorrow.

Have a wonderful week and weekend.

Love,

Debbie

Life Below 100

2010-02-10T18:03:00.000-08:00

So you are wondering what I mean by that. Tomorrow I will hear the results of lambha light chain count for this month. My hope is finally it will be below 100! That will be a moment that will definitely take my breath away!

I have been feeling pretty good lately. My personal trainer, Tim is really happy with my progress so far. Its been just a few months since I started back working out with weights. My progress is going well. I started at 80 pounds on the leg press and today I am up to 265 pounds. It feels so good to be working out again. I started riding my bike doing interval training for about 20 minutes. It sure gets my new heart pumping. I'm going to try and do the interval training 4 times a week, weight training once and twice a week every other week and walk in between. I believe it is important to exercise regularly. Everyone should do something for at least 30 minutes a day. Walk, ride a bike, swim - get out and move. I don't think I could have made a quick recovery after the heart transplant if I wasn't exercising before.

Mark, Scott, Rob and Jeff went to the trailer on Monday and installed 4 new windows and a new slider. I can't wait to see the new windows this weekend. Saturday they will put the rest in. Mark said it is much quieter inside with the new windows. It looks like a new trailer.

Next Sunday I'm giving Erin her first baby shower. I can't wait! She is in her 31st week and little Markie is getting bigger. She said his kicks are getting stronger and more frequent. I can't wait to see his little face, hold him and give him so much love. What a moment that will be.

This past weekend I had the opportunity to spend time with all three of my sons. It was so much fun. They really opened up and talk to me about things they did while growing up. It was so funny to see Matt and Max fighting with each other over stupid things. They talked about times when they did things that even I didn't know about. Wow was that a shock! All in fun but I didn't know about it. I'm just so happy that they are so close to each other even now.

In two weeks, I get to go to Vegas with my sister Mary to celebrate her 50th birthday. We are staying at Belligio and having dinner at Prime. Saturday night we will see the show "Love". How much fun will that be? LOTS!

I will post tomorrow my results from the light chain count. Have a wonderful week.

Remember: Life is not measured by the number of breaths you take but by the number of moments that take your breath away! Go out and make those moments!

Love,
Debbie

Can't Think of a Title for This Post

2010-02-02T18:24:00.000-08:00

Isn't that funny but my mine is completely blank and I can't think of a title for this post. I have a lot going on these days.

The month of February is really busy. This weekend on Saturday night is our son Mark's second annual Beer Bong tournament. He has about 30 people coming over to play. This should be interesting. Last year it went on until 3 in the morning. I won't be playing but its nice to see all the boys and girls Markie played hockey with. Funny they are not boys and girls anymore but men and women, some are married and having children. Time goes by so fast.

Sunday is Super Bowl and of course we are having a Super Bowl party in the bar. Every year it gets alittle bigger and Mark has several football pools going. It's so fun! Last year I wasn't able to go out because it was so close to my heart transplant and I didn't want to get sick. Of course I ended up getting pneumonia anyway. This year I'm doing great and I will just be careful not to be near anyone sick.

The next few weekends I have parties to go to and I am giving Erin her first baby shower on February 21st. It will be so much fun. I have over 50 coming. No games played at the shower. She hates games and so do I. We are just going to eat, visit with everyone and enjoy the moment.

The following weekend on February 26th my sister Mary and I will fly to VEGAS!!! Wow I can't wait. We are staying at the Belligio and seeing the show "LOVE" set to the Beetle music. I am going to take her to dinner at Prime for her 50th birthday on Saturday. I'm sure there will be moments that take my breath away. She is my little sister and I can't believe she will turn 50. Time goes by fast!

Time goes by fast. Don't waste it on things that stress you. Enjoy each moment we have on this earth with the ones you love. Remember the quote. I have this in my trailer on my wall.
Life is not measured by the breaths you take but by the moments that take your breath away!
Live by this message. I try to everyday.

Next week is my off week for chemo. I will take my blood test for light chain count on Wednesday and hopefully by Friday I will have the results. I'm hoping and praying for the count to be below 100. How exciting will that be to finally break the 100 mark. I will let everyone know once I have the reading. I am so blessed to have the results so far.

My friend, Yolanda is currently at Stanford undergoing her stem cell transplant. My prayers are with her. I think about her each day because I know where she is at each point of the stem cell transplant. I know this week is going to be tuff but the results are worth it. I'm finally seeing results I think from the stem cell transplant. Please keep her in your thoughts and prayers.

Also, this year I celebrate one year since I have met and develop a loving relationship with my donor family. Evelyn, Ben, Ashanti, Angelina and Jessika have shown me so much love. They are a big part of my family. We will always share our love and support for each other. I'm excited because they are coming to visit on Sunday for Super Bowl. I miss them!

Have a wonderful week and weekend. Hopefully, I don't forget to take pictures. I cleaned out my pictures from my camera this weekend so I could take pictures when I went to the trailer. I forgot to take one picture. The lake was beautiful with snow on the mountains and I forgot to take a picture. Bad girl. I need to change that!

Love,
Debbie

Catching Up on Things

2010-01-27T06:33:00.000-08:00

Time sure goes by fast. January is almost over and we just started the new year. I'm not even used to using 2010 on everything. It's hard cause for 10 years we have been showing the year as 200_ and now we have to slip in the 2010. That throws me off. Or well I'm sure in a few months it will be old hat.

I don't have much to report these days. Things are going quite well with chemo and my test results. Last post I reported another no evidence of heart rejection - 6 or 7 in a row. My lambha light chain count went down from 119 to 102. I'm praying this month after this cycle of chemo it will be under 100. What an accomplishment if that happens - I mean when it happens. Considering last February I was at 341. The doctors contribute the drop to the stem cell transplant finally kicking in or maybe the increase in the dosage of Velcade each week. I don't care what it is just keep going down. Normal range is 26 so I do have a ways to go but its going in the right direction.

I feel very blessed and lucky when I look back on my disease. There are people out there suffering each day with this disease with no hopes of a cure not even the chance to receive a heart, kidney or liver transplant that will extend their lives or give them the opportunity to receive treatment like a stem cell transplant or the newest treatments available because they are too sick. Some go undiagnosed and then its too late. I was lucky to have very good doctors who recognized the symptoms and took action immediately. I was lucky that Stanford started doing heart transplants on Amyloidosis patients after 20 years and as you know Dr. Kevin was first and I was second. Then came the stem cell transplant. Stanford never performed a stem cell transplant on a heart transplant patient. Again Dr. Kevin was first and I was second. I know we will or have been written in the medical books for this but that doesn't help those out there who go undiagnosed with this disease.

I have a passion and that is to get the word out to the world AMYLOIDOSIS. I wrote to Oprah and asked her to view my blog and read my story and help me save a life. I asked her to do a show on the disease Amyloidosis. Not only will my story tell the facts about the disease but it also will talk about heart transplant, stem cell transplant, organ donation, chemo treatments and much more. I'm hoping she will consider it. The word has to get out. Recently one of our support group members died after being diagnosed only 2 months before. Again, his cardiologist did not recognize that it was Amyloidosis and it was too late for a heart transplant. God bless Bill. Please pray that Oprah will grant my wish and help save a life!!

This weekend we will go to the trailer again. It was soooooo cold there last weekend. My heater in the trailer broke (so I was told - another story). A friend of ours came by and look at it and it was only dirty inside and he got it running perfect. That will help when we first get there to heat the place up and then I can use my little heaters. The trailer was 48 degrees last Friday. It snowed on the hills behind us. By 12:30AM that night it was 68 in the trailer. So the big heater will help heat things up quick and then I can use the others. We got the new windows and Mark is picking them up tomorrow. Scott Ford will put them in on the 13th of February. We are only doing the patio side now and the other side later in March. That will help alot with the heat and keeping it cooler in the summer. Plus it will look so nice and the windows will slide open easier for me. The crank ones we have now are awful. They are the original 1969 slant ones that are cracked with little holes leaking air through them. They have to go!!!

Today I have an appointment at Kaiser for sleep apnea. I was tested positive with my old heart before heart transplant and now they want me tested again to protect my new shared heart. So today is the day. I hate wearing that device at night. I failed the first time and it took two times to get it right. So we will see how I do. If I test positive again they will recommend the night machine to wear to help me breath better. Maybe it will help with sleeping since I haven't slept good since the heart transplant. I take sleeping pill every night but I only get 4-5 good hours of sleep then I'm up. This is due to Decadron and chemo drug for the first few nights after taking them. Then I experience the crash on day 3,4 and 5 and don't sleep because I'm sore. Oh well I'm alive and doing great.

What matters most to me these days is making moments that take my breath away. I try each day to look at something that makes me enjoy the moment. It might be just seeing the sun come up, the stars in the sky, the beautiful rain and rainbows it makes, seeing my puppy Mia when I come home, seeing my new grandchild Markie for the first time in the 3D sonogram. This is what life is about. Its not about money, possessions or credentials. It's about enjoying every moment.

Have a wonderful day and enjoy a moment! I have started writing in my calendar each day a moment that took my breath away. What will it be today!

Love,
Debbie

More Good News

2010-01-18T21:48:00.000-08:00

Every month I nervously wait for the results of my light chain count. This month was the same. I had a heart biopsy on Tuesday and of course I'm worried about that but then its waiting for the both results that drives me crazy. On Wednesday, I received the results of my heart biopsy. NER - no evidence of rejection. What great news! This I think makes 5 or 6 in a row. Jazmin and I are so perfectly matched. Then on Friday, I saw Dr. Acktar and he gave me the great news about my light chain count. The numbers are dropping and my count went down to 102. It's still dropping and that's all that matters. I can't wait for the number to go below 100. That will be a moment that takes my breath away!!! So for another month the same treatment, Monday Decadron and Tuesday chemo for three weeks.

I spent a wonderful weekend at the trailer on Saturday and Sunday. It was raining and I loved it! It's so cozy! Rob put a new light fixture in my kitchen and spare bedroom. They have been there since the trailer was new in 1969. They were so awful. It's little things like that, that make the trailer so homey. I can't wait to go back this weekend. It's my little place in heaven.

I want everyone to know that my long periods between postings doesn't mean something is wrong. Maxwell's charger for his computer is dead and he is using my computer alot. I promise if something is wrong, everyone will know about it before I even get a chance to post it.

I'm looking at going to Las Vegas for my sister Mary's 50th birthday. I keep thinking about the money. I hate that! My life is measured by moments and I hate that I might miss that moment. It's a special time for my sister and I don't want to miss it. I think about the moments that we will make that will take my breath away. I don't want to miss a moment!

This week is going to be really quiet except for chemo and labs tomorrow. With all the storms coming, it's better to just stay inside.

Have a wonderful weekend.
Love,
Debbie

Jazmin and Jamae's Headstone is Ordered

2009-12-29T20:21:00.000-08:00

SAMPLE OF WHAT THE HEADSTONE LOOKS LIKE

I am so happy to let everyone who donated that the headstone is ordered and will be here sometime in April. Evelyn and I have had such an ordeal trying to order the headstone. Jazmin bless her heart had a dream of a headstone with a heart and two angels hugging the heart on each side. The problem was the grave site is not big enough for a headstone that size. So then we had to find another headstone that would fit on the grave site. We went to several companies but either they didn't have what we wanted or the biggest problem was they wouldn't install in the cemetery in Vacaville. Wow I learned alot.

On Saturday, I spent the day with Evelyn and her daughter Jessika. Jessika is Jazmin and Jamae's younger sister. She is beautiful and such a wonderful young lady. I really enjoyed my time with her. She was such an inspiration helping us to design and order the headstone. I'm so happy she was apart of this special day.

The headstone is basically just like the one above with some minor changes. The angel is in a soft gray color with highlights of white. The roses will be yellow with green stems. The lettering will be in white but a special font. On the back Evelyn wrote "In God's loving arms". It will be so beautiful and I'm happy it will be here soon. I know Jazmin was smiling down on us that day. I could feel her spirit was with us.

It will be a moment that takes my breath away the day the headstone is placed. I know it will be hard for Evelyn and her family but I hope she knows how much her beautiful daughters deserve to have a beautiful headstone on their resting place. I was there on Saturday and it hurts my heart to see these little green names plates with their information on it. It really made me mad to see how the landscapers just run their lawnmowers over the plates and they are all scratch up. I hope they are more careful with an expensive headstone.

Well the New Year is almost here. I wish everyone a Happy New Year! Be safe too! We will be spending our New Year at the trailer with friends. I'm really looking forward to it. It's been a few weeks since I have been there and I miss it. Hopefully, 2010 will bring good health and happiness to all! I'm really praying for the good health. 2008 was a year of diagnosis and eventually my heart transplant. 2009 was the stem cell transplant. So during 2010 I hope there will be no major treatments, just continuing with my weekly chemo and watch my numbers go down!!!!

Happy New Year!

Love,

Debbie

GOOD NEWS!!!!!

2009-12-22T06:02:00.001-08:00

LAMBHA LIGHT CHAIN COUNT

119

Another drop in last month in my light chain count. Dr. Akthar was very pleased with the results. He said that as long as the numbers keep dropping, I will hit a plateau and then he will consider going on a maintenance program and off chemo for a while. That would be a blessing!

The normal range is 26, so I still have a long way to go but my wish is 2010 I will reach normal range and stay there. I keep praying to God each day to help me get healthy again. I'm feeling great except for the cold. My new shared heart is strong and helps me to do my weekly workout with my trainer. I still have some extra things to do to maintain my health such as walking or riding my bike and eating better. It's so frustrating being on these drugs because I'm hungry all the time. The steroids put weight on fast. I lost alot after stem cell transplant but thanks to Decadron its all back on again. So all millions of us say each year "I'll start eating and exercising more in 2010". For me that is so important, because I realized after heart transplant how being in shape really helped in my recovery.

Well if this week gets crazy and want to wish everyone a blessed Christmas! Life is not measured by the number of breaths you take but by the moments that take your breath away. Live by those words because you never know what lies ahead. I want to live each moment to the fullest.

I'm going on a cruise in May to Alaska. It's not Seabourn (DARN!! but Holland America. This will be my first cruise on a big ship, 1800 passengers compare to Seabourn at 200. I don't think my little guy with the spray bottle will be coming around and spraying me to keep cool, HAHA. Well in Alaska that won't happen. Maybe in 2011 I will be able to go back to Italy on Seabourn. I wanted to stay close to the US in case of any emergency. It will be fun to see the beautiful scenery, animals and of course make those moments that take my breath away.

Have a wonderful Christmas and Happy New Year!

love to all,

Debbie

GOOD NEWS!!!!!

2009-12-22T06:02:00.000-08:00

Time Does Go By Fast!

2009-12-10T10:04:00.000-08:00

Wow I can't believe how fast time goes by. I haven't blogged since December 1st. So here it goes.

December 4th Weekend

I spent the last weekend in Beverly Hills with Mom, Gary and Debbie. Oh and Mia came too! We had such a great time. The hotel is so beautiful. It felt just like home. We had a wonderful room complete with a little bed for Mia and her own silver feeding dishes. She roamed the halls of the hotel like it was her own palace. She became so protected of her space especially when other dogs were around. It was funny to watch her.

We had dinner at E'Baldi on Friday night. Wonderful food but soooo noisy inside. It is the place to be seen. It's funny to watch the people in Beverly Hills. I can only say one word, "plastic". The hotel staff is wonderful and they are good down to earth people but the people visit the hotel can be alittle fake or should I say alot of fake. On Saturday night we had dinner in the Montage Kitchen with our own private executive chef, John. This was fabulous! We had 8 courses including wine parings (which I didn't have cause of the drugs) but everyone enjoyed it. The food was wonderful. Little portions but so rich!! Mom enjoyed herself so much. I love to see her smile from ear to ear to experience these wonderful things. And of course this could not have happen without the generosity of Debbie and Gary. They are truly dear friends. The things I have been able to see and do I will never be able to say enough thank yous. This weekend was filled with many moments that took my breath away.

I spent time with Matthew and I'm sooooo happy to say he is moving home to the Bay Area. I want him closer to us. He got his old job back in Oakland and will start on the 4th of January. He will stay with us for a few weeks and then move in with his friend Laura. It will be a fresh start for him and less stress. Los Angeles is very expensive to live there and he would have to get two jobs in order to stay there. He is waiting for a test date to take the radiology test to take x rays. I'm just happy he will be coming home.

I need to do some catching up in time on my blog. The week of December7th I spent at home sick. Mark came home from Pittsburg with a bad cold and of course by Wednesday I was sick. I was soooo sick I couldn't attend the company party on Saturday. Monday was the worst and I had to take blood tests to check for low white cell count. Thankfully, white cell count was good but I was so sick. I still have the cough.

This past week I had a doctor's appointment at Stanford with Dr. Schrier. It was the first time in over a year that I could see in his eyes how happy he was with my treatment. My numbers have been going down and he walked into the exam room pumping his arms in the air with a big smile on his face. He was so happy. My numbers have come down from 341 to 130. I will get my results for this past month tomorrow. Hopefully another decrease. He wants me to continue with the same treatment which is Decadron Monday night and Tuesday infusion of Velcade. My numbers have to get down to 26 or close to that. I have a heart biopsy scheduled for January 12th and I will have to do a test for Amyloid in my new shared heart.

This weekend I spent at the trailer. Another relaxing and restful weekend. Christine and I took a ride yesterday to Lucerne to visit her friends. It was a nice ride around the lake. I finished hanging my curtains in the trailer. It looks so good. We ordered the new windows and hopefully Scottie can put them in next month. That will really help with the cold drafts I feel when we are there. It should make a difference. I felt so stressed leaving on Friday night. I had Matthew's dog Cassie staying with us and I couldn't bring her too to the trailer becasue the park only allows one dog. I left Cassie with our neighbor Jane for the night until Matthew came on Saturday night. I felt bad leaving her. Once we were driving to the trailer I felt the stress leave my body.
It is so amazing how much being up there makes me feel so good. We will go up again for the New Year. Our neighbors, Jane and Steve will be staying at Konocti Casino in the RV park. We are going to spend New Year's Eve at the Casino and at their trailer. Another fun weekend to come!

This week is Christmas week. I can't believe this year is almost over. Where did the time go. I brought a beautiful picture with the quote I live by "Life is not measured by the number of breaths you take but the number of moments that take your breath away". I hung it in the trailer and I love reading the quote everytime I'm there. I am so grateful to spend another Christmas with my family and look forward to next year when my little grand son will be here. I will have many moments that take my breath away when he is here. I can't wait!

I wish everyone a blessed Christmas and Happy New Year!

Love,
Debbie

Busy, Busy and Busy!!!

2009-12-01T22:39:00.003-08:00

Wow lots of things have been going on the past few weeks. First, I have been spending at least every weekend at the trailer. It has been so relaxing! Some days I never even get out of my pjs and sit and watch movies all day. I love it! We found a great little restaurant called the Sports Stop. We go there every Sunday morning for breakfast and watch football. The owner, Mike is so nice to us and we have alot of fun. Mark and I have done some things to the trailer to make it more homely. We brought furniture from home up there and replace curtains. It feels like home! The other day I saw these pictures a few months back at this little shop next to us. So Christine and I went there to look at the pictures again. I walked in and went to the little room where they displayed the pictures but they only had ones saying "lake house" or some other stupid sayings. I remember when I walked in there was one sitting in the main store and I looked up and couldn't believe what I was reading. It is the saying I live by and here it is again for all of you to live by:

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

So this is how I choose to live my life now. I live for the moments I make each and every day. I hope you will too!!!

Tonight was sad. I attend a rosary for my Uncle Sammy. My cousins, Angie, Michael, Sandy and Vince were very close to me growing up. We lived only blocks away and I went to school with Angie. Uncle Sammy died on Saturday after a 9 month battle with heart disease and other complications. He was 85 years old and lived a good life. I was happy to be able to attend tonight and see my cousins, aunts and uncles.

This weekend I will be leaving for Beverly Hills. Nana is coming with me and she is so excited. It will be her first trip to the Montage hotel and she is really looking forward to it. We will go to E'Baldi Italian restaurant, my favorite, on Friday night for dinner. Saturday night we will have dinner in the kitchen at the Montage with our private chef. I'm so excited for Mom to experience it because she loves to cook and she will be able to ask questions about cooking tips. We did it a few months ago and it was such a great experience. We will have late check out on Sunday so we can enjoy our beautiful room. I get to take Mia with me too. I'm didn't want to leave her for 3 days. The Montage accommodates animals and the general manager, Mr. Kaski said it was perfectly fine for me to bring her. I will visit Matthew on Saturday and take him to Costco for a Costco run. He needs food and Mom is the only one that can give him what he needs. Big Mark leaves on Thursday morning for Pittsburg to see his Pittsburg Penguins and the Steelers play. He is so excited. So we both will have a great weekend. Talk about moments that will take my breath away. I get to bring my Mom and see how much she appreciates these special little moments. She will be smiling from ear to ear and I get to savor the moment. That is what life is all about.

I wanted everyone to know the update on the headstone. We have chosen a few patterns but having trouble with the color - yellow. The online company has the color but I'm a little nervous about ordering from an online company for something so special like that. We found a place in Napa who agreed to install (another big problem ordering on line finding someone to agreed to install) and there is another company in Hayward who we are looking at to order the headstone from. I thought this process would be simple but it wasn't. Either the headstone we pick is too big for the gravesite, no one will install it or it doesn't come in the color we want. It has been so frustrating. Hopefully soon we will have it ordered and I can breathe a sign of relief that finally Jazmin will get her dream. I have been communicating and saw Evelyn a few times. The girls are doing great but poor Evelyn has been sick with the flu for weeks. She is just now getting better and that's why I haven't seen her. We talk often and I love her very much. She has always shown me her love and support and I am grateful to have her in my life.

Now as for my health. Things are going well. My lambha count went down last week to 130 from 137. Not a big jump down but it was down. Normal range is 26 so I have a long way to go. I was hoping it would be below 100 this time but the doctors say it will plateau and then I will have to look at other treatments. We will cross that bridge when we come to it but for now it's working. Thank God! I have been working out with my trainer every Wednesday. I'm up to 205 on the leg press and Tim is so happy with my progress. I am too! It makes me feel normal. My hair is growing back about 1-2 inches and full of curls. I don't know where the curls came from but it's cute. The weight is coming on again due to the steroid Decadron. My appetite is back and I'm always hungry. Oh well I have other things to worry about. I do need to start walking again and hopefully soon. It will help with my bones and of course weight gain. For now I will continue taking chemo each week and hopefully my numbers continue to come down. No other big procedures until January when I go back for heart biopsy. The heart is doing great. No complications and I just have to say healthy and away from anyone who is sick.

Well its almost 11:30PM and I have a big day tomorrow. I work out with Tim and then I have my first teeth cleaning since stem cell transplant. The high dose chemo did damage on my gums and I was not able to brush with a regular brush or floss for two months after. So you can imagine I will not have a good time. I'm going to tell Karen to take it easy this time especially because I don't want any problems this weekend. I want to do it every month for a few months until the problem is cured.

Have a wonderful weekend and remember go out and make moments that take your breath away!

Love,

Debbie

Busy, Busy and Busy!!!

2009-12-01T22:39:00.001-08:00

Happy Thanksgiving

2009-11-25T19:00:00.000-08:00

Wishing You and Your Family a Blessed Thanksgiving

Make Every Moment Count!

Love,

Debbie

My First Grand Child

2009-11-18T08:17:00.000-08:00

IT'S A BOY!!!!!

I'M SO HAPPY FOR THIS BLESSING!

Happy Birthday To A Special Lady

2009-11-11T21:38:00.000-08:00

HAPPY BIRTHDAY

EVELYN

TO THE MOST LOVING AND CARING PERSON ON THIS EARTH. SHE ONLY GIVES AND NEVER ASKS FOR ANYTHING IN RETURN. THANK GOD SHE IS IN MY LIFE!

I LOVE YOU SO MUCH! HAPPY BIRTHDAY!

Where Has The Time Gone

2009-11-11T21:06:00.000-08:00

I can't believe time has gone by so fast. I haven't wrote for over a week. I have been so busy. Last weekend on Saturday night I got to go to the Sharks game. My first game since getting sick. It was so much fun. Not only did my Sharkies kick butt on the Stanley Cup Champions Pittsburg Penguins 5-0 but to see my husband Mark cry was great! Our neighbors Jane and Steve Bjork came too. It was their first live hockey game. They loved it. We took them to the famous Shark hang out "Henry's" for dinner. So they got the full treatment of Henry's and a Shark game that night. It was a moment to remember. The rest of the weekend was relaxing watching football. I watch the movie "The Proposal" too on Sunday. What a funny movie!

Yesterday was the best day! I got to spend the whole day with my best friend and fellow heart transplant buddy "Tippi". I picked Tippi up and we went to Santa Clara Heart Transplant support group meeting. Dr. Kevin Anderson, another fellow heart transplant recipient, give a presentation on "Men and Sex after Heart Transplant". Al through it didn't have much information for us ladies, I still learned alot. The room was packed with heart transplant recipients, those waiting for a heart in the hospital and those just diagnosed with heart disease and considering a transplant. It is amazing how many people need heart transplants. Doctors have said they transplant a total of 16 from January to June, 2009 just at Kaiser. WOW! Thank God to those who make the choice to donate. It was a fun day. The million dollar girls out all day. We went to lunch and talk and talk. I kept telling Tippi I was sorry for talking so much. I took my Decadron on Monday night and so yesterday I was flying high. She's a good friend and understands.

Since getting sick I have to take such good care of my health in all areas. I have to be seen by doctors for skin cancers, OB/GYN, mammograms and not excluding bone marrow doctors, chemo doctors and heart transplant doctors. My schedule each week includes appointments for something. This is my new normal life. It was funny yesterday, Dr. Kevin, said it so perfectly. Our new normal life finally feels like a normal life again. I have to agree I'm almost there.

This weekend we are going to the lake all weekend. It's going to be so relaxing. I am bringing up some new movies to watch. Mia loves the lake house. She is so calm and quiet there. We go for walks down by the lake. She is so funny. She barks at the waves crashing on the shore. I laugh at the things she finds so interesting. She has brought so much joy into my life. She got groom today and looks so cute. Her hair is so long and fluffy. I love combing her long hair each night.
Jeff and Christine will be at the lake too. We are going to dinner at the Sports Stop in Kelseyville and again for breakfast and football on Sunday morning. We love the place. Mike is the owner and he is so good to us. Food is great!!!!

Next week I will do labs on Wednesday to check monthly light chain count. Hopefully I have another month of decrease in my numbers. That would be great! No chemo next week! Yeah!

Oh and the best part is that on Tuesday, November 17th, Erin and Mark find out the sex of the baby. As I said before I don't care what the sex is just that the baby is healthy and Erin is fine. I will be so happy to have a boy or girl. I'm just happy to be a grandma!

Sorry for not writing but like I said "life is getting back to a new normal". Moments are being made and life is good!

Love,
Debbie

The Numbers Are Going Down!!

2009-10-27T19:45:00.001-07:00

Yesterday I received good news. My lambha light chain count went down again to 137 from 169. That is such great news! The chemo treatments of Decadron and Velcade are kicking in and lowering my count. Now can't get too excited I have a long way to go to hit normal of 26. Dr. Akthar says at some time it will reach a platto and even out. I hope it evens out around under 50. Next month will be interesting to see how far it goes down because I will have had a full dosage at 2.6 for 3 weeks. I only had 2 weeks of the dosage 2.6 and had such a great result. Time will only tell. I just can't believe how my life has changed and all I think about is numbers. White Blood Count, Light chain Count and more! Someday I hope I won't have to think about it anymore. I know that won't happen because there is no cure for the disease Amyloidosis. Just controlling it through chemo. I am blessed that the treatment is working. God bless that.

Not much going on this week. I am really tired especially at night. I don't sleep very well which I think is the problem. Last night I took my dosage of Decadron which keeps me up and gives me a dull headache. If it gets really bad I take Vicodim. Not that bad so far. Today I had chemo and all went well. Yesterday I had my monthly visit with Dr. Akthar, chemo doctor. He is very pleased with the results and said we will keep it up and hopefully the numbers will keep going down. I stood in line for almost an hour waiting for the H1N1 shot. I started to get nervous because there were little kids there getting the shot as a live virus through the nose. I am not supposed to be around anyone who gets the shot through the nose as a live virus for two weeks. So why did they have people like me standing next to kids getting the shot that way. I had my mask on and with my short hair, the nurses knew I was immune suppressed. Mom was waiting for me at Dr. Akthar's office and asked if he would give me the shot and he did. Thank God because today they ran out of the shots. I feel better knowing I am protected now. I have to be so careful not to get sick. My boys all got their shots, just the flu shot. Markie will get the H1N1 too because Erin is pregnant.

Erin and Markie had a doctor's appointment which the doctor canceled a half hour before and rescheduled for Thursday. They might be told the sex on Thursday if the doctor sees it right there in front of him. I will let you know after the doctor appointment.

This weekend I am going to the trailer again. I had a wonderful time this last weekend with Linda. It was so relaxing. We went to dinner Saturday and had a terrible meal. We went to Zino's Italian restaurant and ordered Veal Picatta. It came out as a square frozen piece of veal that tasted like ground veal and pork. It was awful. What kind of Italian would serve that. We went to breakfast on Sunday at the Grapevine Cafe. It is a new place with only 6 tables and it was great. We will go back on Sunday this weekend. Our heater is giving us some problems and the repair man was there today and said that he needed to locate a part. If he can then no big deal, if not it means a new heater. That is not good! He'll let me know tomorrow. We might be a little cold this weekend but we have portable heaters that we can use. Let's hope for the best.

Have a great week and weekend ahead. Go out and make those memories count.

Love,
Debbie

Not Much to Talk About

2009-10-23T19:29:00.000-07:00

There hasn't been much to talk about. I guess that is a good thing. No problems with my health. Just the same old things going on. I had a break from chemo this week and that felt good. I was really tired on Thursday and last night slept all night without getting up once. It felt great. I have been having more numbness in the fingers and toes lately. Do not know if its medicines or the disease Amyloidosis.

Tomorrow I will be going to the trailer with Linda Ford. We want to spend some time together, go to dinner and just relax. Scott is hunting and Mark is painting Todd Jr.'s new house. I still have little things to do at the trailer, like fix my chair pads in the kitchen. I love the trailer. It's a place I can really relax and feel stress free. The minute I drive through the gates of the park, I can feel the stress go out of my body. Wish I could spend more time there.

Next week I will see Dr. Akhtar on Monday and find out my lambha light chain count. I hope I have another big decrease. That would be wonderful. All other lab tests have come out good this week. Next round of chemo starts up again on Tuesday with Decadron on Monday. I plan to get the H1N1 shot on Monday. Wow that is so scary when your immune system is soooo low. I'm so afraid of getting sick.

Erin will go to the doctor on the 27th. She is doing great. On November 17th we find out the sex of the baby. I'm excited but don't really care. Boy or girl, it doesn't matter as long as Erin and the baby are fine. I want a healthy grand child. Erin has more energy and is feeling better. I told her to enjoy the next 3 months and then its down hill again. Can't wait to see her big belly and my little grand baby moving inside her. That will be a moment to cherish!

Oh, I haven't said but my hair is coming back. It's so curly and thick. Wow the doctors were right when they said it would come back different than before. I can't wait to style it. My friend Laurie is so excited to start cutting it into some kind of style. We will just have to wait and see what my hair decides to do.

Have a wonderful weekend and enjoy every moment!

Love,
Debbie

Getting Back to Normal

2009-10-14T21:17:00.000-07:00

Yes today it felt like normal again! I worked out with my personal trainer, Tim Rogers for the first time in a year. It felt so great and I didn't do so bad either. Well I didn't do 385 on the leg press but only 80 pounds for 7 minutes. Tim said it is obvious I need to go up on the weight but everything else I did fine. Wow it felt really good. Heart transplant has encouraged me to start building muscle and bone because of the drug Decadron which causes bone fractures. I'm starting slow and hopefully by January I can be back doing my normal exercises twice a week. I need to start walking again too. My ankle is doing fine so I think I can start soon.

Saturday I plan to attend my Amyloidosis support meeting in Walnut Creek. I miss seeing everyone and Dr. Kevin will be there too. The group has not seen me since stem cell transplant and I'm looking forward to talking to everyone about my results and current treatment. We are supposed to have a doctor from UCSF there to discuss our disease too.

After my meeting I'm driving to the trailer for the weekend. Scott and Linda will be there and Mark and I have lots of little things to do on the trailer. I need to dust the spider webs, rearrange my living room furniture and just do little things to get my little place ready for winter . I want to stock the closets and drawers with clothes, jackets and sweats so I don't have to pack every time we go up. I want most things there all the time.

An update on the ordering of the headstone. Evelyn and I ran into a problem with the online monument company. The headstone Jazmin picked out does not come in the size we need (32") for the grave site. They never told us that until we were ready to order. So now Evelyn has to choose another headstone. We are going to a monument company or two in Sacramento and look at them in person to make the decision. Hopefully, by next weekend we can place an order and it will be installed soon.

Have a wonderful weekend! Make those memories count. Today was a moment to remember.

Love,
Debbie

Busy Making Memories

2009-10-12T20:57:00.000-07:00

I have been soooooo busy making memories. First, to the important news. No amyloid in my new shared heart. I am so blessed to have all my annual tests come back perfect including an NER (No evidence of rejection) and no amyloid in my heart. Also, the lambha light chain count is coming down from 211 to 169. This week is my last week for this cycle of chemo, which the dosage of Velcade was increased from 2.0 to 2.6. I hope the increase will keep the light chain count number going down. I will take the test next week.

This weekend was so much fun! I left on Friday and drove to Vacaville to pick up Ashanti, Jazmin's little sister. Ashanti spent the weekend with us. Friday night we relaxed at home. Saturday was so much fun. I made a big pot of spaghetti sauce and meatballs. We had dinner at Sean and Becky's house (Linda's daughter). Becky has three girls, Kennedy, Kaley and Capri. She has a big play room for the kids. Also that night Linda was babysitting Kenndel and Cody, two more grandchildren and Kennedy had a friend over too. There were five screaming girls and one boy. It was so crazy in the house that night. Ashanti had so much fun dressing up in play clothes, modeling and playing with the other kids. We didn't get home until 11:00PM and she was so tired. She fell right to sleep that night. Sunday we went to breakfast at my favorite little restaurant called Norm's Kitchen. Mark and Ron Rackerby came too before leaving for the 49er game. It was sad because it was time to bring Ashanti home. She fell asleep all the way home to Vacaville. I hope she had a good time and that the memories we made will stay with her forever. I know they will be with me forever!

This is what life is all about. It was so important to me to spend time with Ashanti. She is such a special little girl. She loved her big sisters Jamae and Jazmin and talked about them alot. It was nice to hear her tell me things about what she would do with her sisters and how much she misses them. Driving home was really sad and lonely. I missed her!

Oh I also cleaned out my closet and Marks. I took 6 full bags of clothes to the Goodwill. It felt so good to organize the closets and donate the clothes to Goodwill. I have been wanting to do that for months.

Mia goes to the groomer tomorrow for the first time. I'm so excited to see what she will look like after her first hair cut. I can't see her eyes and she looks like a shaddy dog. After she gets her hair cut she will look more like a shiatsu. She is going to be the cutest puppy!

I'm also asking for everyone to say a special prayer to my heart transplant friend, Jon Warren. I met Jon on 8-12-08, just 10 days after he received his new heart. Jon was a very special person with a great big smile. He was a gentle man! Jon suffered from heart failure for many years and finally got the opportunity to receive a new heart in July of 2008. Sadly, his wife Cheryl email me and said Jon passed away on October 4th. He had problems with his colon and antibody rejection. After a fierce battle including emergency surgery, Jon's body just couldn't do it anymore. My heart is broken. I will miss his beautiful smile and friendship. Jon was able to spend the last year doing what he wanted to do. Things he was unable to do with his old heart. Only God knows why he gave him just one more year. God bless you, Jon.

When I hear things like this I realize how precious life is and that every moment is precious. Making moments that take your breath away is my goal in life. I try to look at each day and ask myself "what moment today took your breath away". Ask yourself that same question and if you can't answer then you are taking life for granted. Life is short and we all know anything can happen but don't take it for granted. Spend time with family and friends, go for a drive, take a bath, give a child some love. Whatever it is that makes you stop and say "This is what life is all about".

Love,
Debbie

Is Life Getting Boring!

2009-10-06T19:44:00.000-07:00

I can say life seems to be getting boring and I like it! This means the doctor appointments are getting farther apart except for chemo every week, it's back to the same old stuff.

I spent the weekend at the trailer again. I just love going up there. We had a little problem Saturday night with our heater. We couldn't get it to work and the next morning our assistant manager Tom tried to fix it but it needed to be checked out with a heating company. He was going to arrange the repairs and hopefully its not much and we can get back up there soon. We spent Saturday at Big Todd Schapmire's house. We brought a group of friends (Jane & Steve, Scott & Linda, Jeff & Christine and Bob Keyes) to listen to Big Todd's band. We had so much fun! Todd had a big BBQ and later the band played. It made me so happy and full of smiles seeing Big Todd living his dream of performing on stage (the Redwood Tree Stage in his backyard) to all his friends and family. The smile on his face will be a moment to remember. I'm so happy he is doing what he loves.

Yesterday I had my normal routine of Decadron last night and chemo today. Finally Stanford communicated to Kaiser that my dosage needed to be increase from 2.0mg to 2.6mg and today I received the correct dosage. I want to aggressively attack this disease especially now that I'm seeing my numbers go down. I'm so excited to go to the Amyloidosis support group next weekend and see the group. There are so many of them that have had one or two stem cell transplants and are really fighting this disease. All I can do at this time is continue taking the Decadron and Velcade each week and pray that the treatment works to bring the numbers down. I pray each night that my disease will go into complete or partial response and I can have a break from these drugs. I get to start working out with my personal trainer, Tim Rogers. Kaiser heart transplant feels this is the best thing for me. Yes I will start slow but just watch me go! I was in the best shape of my life before I was diagnosed. I really believe the condition of my body was the reason why I did so well through the heart transplant and stem cell transplant. I hope everyone reading this will understand how important it is to exercise at least 30 minutes a day. It's life saving!

Speaking of prayers, I know how much the power of prayer can mean to someone. So please pray for Auntie Mary Joan's new husband and my new uncle Don. He has suffered a relapse and is in the hospital. Pray that he can recover from this and get back home to Auntie Mary Joan. She needs him close to her and they have many more moments to enjoy.

This weekend on Friday I will be going to pick up Ashanti, Jazmin's little sister. She is going to spend the weekend with me and I am so excited. We are going to have lunch with Evelyn and I will bring flowers to the girl's gravesite. I can't wait to go there and see the beautiful headstone. Hopefully, it will be installed within the next 4 months. Ashanti and I will play with Linda's grand daughters on Saturday, go shopping and play with Mia. There will be plenty of moments made spending time with Ashanti. I can't wait! I called tonight and little Angelina got on the phone and said "Hi Debbie (at least 5 times) I love you (at least 5 more times) Bye Debbie" as clear as a bell. It was so cute. I'll never forget it.

So as I said life is getting boring but I like it! So now it getting back to living and enjoying the things I love to do. Spending time at my little trailer with friends, making memories with the people who mean the most to me, waiting for the moment I can hold my new baby grand child in my arms and just making every moment count.

Enjoy every moment!

Love,
Debbie

It's Been a Year and Oh What A Year!

2009-10-01T19:54:00.000-07:00

Can you believe it's been one year since heart transplant. This week has been a blessing!

One year ago, I received a call from Dr. Dana telling me she had the perfect heart waiting for me at Stanford. Today, I believe she was right! My shared heart and my angel Jazmin have watched over me and continues to give me good health.

On Tuesday and Wednesday, I underwent many tests including blood tests, EKG, echo, heart biopsy, right and left heart cath. All tests were perfect and today I received the call regarding heart biopsy - another NER (5 in a row). Now do I have the perfect heart!

Also, this week on Tuesday was the best news. My lambha light chain count dropped from 211 to 169. That was the best news ever!!! Hopefully, the Decadron and Velcade is finally working along with the stem cell to decrease my lambha light chain count. I know I have a long way to go to reach 26 but maybe this is it - it's finally going down. I pray each day that my count will start going down and my disease would finally be in complete or partial response. I hope the time has come.

Now for the last test results and that is whether there is amyloid in my shared heart. I don't think so but until they tell me yes or no - I worry.

Mom and I had a wonderful two days together. I know how hard it is for her to see me go through all these tests but I could not do it without her. She gives me strength to continue going on. I think about my new baby grand child, a healthy life, traveling, and living my life to the fullest. That's why I will continue fighting this disease.

This weekend I will spend relaxing at our trailer in Lake County. On Saturday, I am going to Todd and Sherri's house in Ukiah to listen to Big Todd's band. I can't wait. That will be so much fun! I think the weather is changing and it should be cold or cooler at the lake but it will be fun anyway. I really want to use our little trailer more this year especially in the winter time when its raining and stormy outside.

Have a wonderful weekend and enjoy each and every moment God gives you! They are special!

Love,
Debbie

What a Weekend!!!!

2009-09-28T19:39:00.000-07:00

I had a fabulous weekend in Los Angeles. It didn't start out good but ended great!

Our flight on Friday was delayed in San Francisco for two hours due to fog. We arrived in Los Angeles at 2:00PM and then drove to Beverly Hills. I was so excited when we pulled up in front of the Montage Beverly Hills. Our friend and doorman, JC greeted all of us. Mr Kaseki upgraded Mark and I to a Junior Suite and Debbie and Gary to a full suite. It was beautiful!

Friday night we had dinner in the kitchen at the Montage. The executive chef, John
prepared small bite meals. The first was pasta in a white sauce with white truffles. Of course, Mark did not want to eat the truffles (mushrooms) but Chef John kept insisting that he try one. He showed us a small truffle that he said cost $2,500.00. Mark quickly tried one. The second course was John Dory fish and again Mark didn't want to try it. Chef John convinced him to try it,he loved it. Our final meals included a tomato salad with sorbay; short ribs; new york steak (small thin pieces) and to top it all off a wonderful chocolate dessert with Carmel ice cream and Carmel sauce. Having dinner in this beautiful kitchen watching all the chefs cooking was an experience I won't forget. It was a moment to remember!

The next morning we were up at 5:00AM and out the door to the Breast and Ovarian Cancer walk. I was not able to walk this year but Debbie walked the whole 6 miles. Good job Deb! We stayed for the ceremony and Team Conley placed third in the overall fundraising. What an accomplishment!

Mark and I left with Matthew and stopped at Costco. We stocked Matthew's freezer with food and he was so happy. Mark and I hung all his pictures on the wall. His apartment looked so great! Matthew had dinner with us that night at the Grill on the Alley. We were starving when we came back from his apartment, we ordered room service and ate too much. We fell asleep for an hour before dinner. We had a wonderful dinner at the Grill but we were tired and full from our snack. I was looking forward to sleeping in the next morning.

On Sunday, we got to sleep in until 9:00AM and had a beautiful breakfast in Gary and Debbie's suite. It was a beautiful morning and the breakfast was so good. We then met our liquor license receiver and his wife, Craig and Cindy for lunch. I felt all I did all weekend was EAT. Then quickly it was time to get to the airport for our flight home. I wanted to go but deep inside I wanted to stay in this beautiful hotel just one more night. I look forward to the next time I can stay there again.

Today I'm alittle tired and stressed about the next two days. Tomorrow is chemo and then Mom and I drive to Santa Clara for my first day of tests. Tomorrow tests include EKG, echo and visit with the doctor. On Wednesday I will be there at 9:00AM for a heart biopsy, right heart cath and an angiogram. Mom and I will stay the night just in case I have any problems. Last time I had excessive bleeding and had to drive home two hours. It was not fun! Hopefully this time will be better.

Have a wonderful week and I will let everyone know the results of my tests at the end of the week.

Love,
Debbie

Remembering

2009-09-24T08:55:00.000-07:00

Remembering one year ago this week the events that brought me to this day. Last year on September 22, 2008, I was admitted to Kaiser Heart Transplant Center to wait (what the doctors said 60 days for a new heart). On that same day, a beautiful child passed onto heaven and is my angel, Jazmin.

Three days later, I was rushed to Stanford Medical Center for a second chance at life. I arrived at midnight September 25, 2008, to wait 19 hours for the right time to begin the heart transplant. At 6:30PM on September 26th, I was taken into the operating room for a heart transplant. The months of testing, doctor appointments, happy and sad times all came together that night. A new heart!

This year has been a year full of moments. Sometimes happy and sometimes sad. Happy times were those such as my speedy and healthy recovery after the heart transplant, my new friends I have met, Kevin, Tippi, John, Matt, Ken and all the other heart transplant recipients, my wonderful doctors, Dr. Costelo, Dr. Warren, Dr. Weisshaar, Dr. Orer, Dr. Toby, Dr. Schrier, Dr. Aeria and of course the nurses at heart transplant center, Sue and Charlene and those who cared for me during the heart transplant and stem cell transplant. Happy moment was the day Erin told me I was going to be a grandma. I told the Stanford doctors, when they were considering accepting me for a heart transplant, that all I wanted was to be a grandma and to give me enough time to be a grandma. Another happy moment was the day I met Evelyn, Jazmin's Mom. When she got out of her car, all I could think of was to give her a big hug and hold on to her. Today, we still give eachother a big hug and I say to her, "my heart to yours, I love you".

She is a very loving and caring person and I am lucky to have her in my life. As for sad moments, I have to say there are few but the only one that I think about most is "why isn't there a cure for my disease and when will I be in partial or complete response".

There are many others out there suffering more than I have this past year. I think about my Aunt Mary Joan. Stage 4 breast cancer and how strong she is. She says I'm an inspiration and that I am so brave. She is the one who is brave! She told me she wants "quality of life" and not necessarily "quantity of life". I agree. We have to live each day as though it could be our last. Make those moments count!!!

Mom and I spent Tuesday with Evelyn. We went to lunch and talked, laughed and enjoyed the moment. It meant so much to me to be with Evelyn that day. Mom and I took flowers to the girls grave and said our prayers. I told Jazmin that it will be soon that her beautiful headstone will be placed in honor of her dream. Ashanti's birthday was a few days before, so Mom and I got to go shopping for her and Angelina. Ashanti called me to say thank you and to hear her sweet voice was so special. That day I felt happy inside and a sense of peace. Again, a moment I will never forget.

Now to why I haven't posted in a week. My computer died and I had to call Dell for a tech to come out. All is fixed now. Yesterday, didn't go as planned. I started out doing my normal morning routine which has included walking Mia for 45 minutes. We started on our walk and 5 minutes into it, I fell and twisted my left ankle. I had to call Jane, my neighbor to come and get us because I could not walk. Mom came and brought me to Kaiser for X rays and to see the doctor. No broken bones but badly sprained. He gave me a boot to wear to stabilize the ankle because of my trip to Los Angeles this weekend. Just what I needed, when I was beginning to get on track with my exercise and feeling stronger. Now this puts me back a few weeks. Oh well, could have been worse like a broken ankle or leg.

Tomorrow I fly to Los Angeles for the Long Beach Cancer Walk. I have done this walk several years, but of course I won't be walking this year. I plan to volunteer to help with registration or anything else they might need. I will be donating $500.00 to breast cancer from the Jazmin I. Mitchell Memorial Fund. I want to state that the two hurtful postings made by someone who didn't identify themselves WAS NOT Evelyn. I know who it was and I feel sorry for that person. Evelyn has and continues to be supportive of the way I have handled the fundraiser. I never did anything without her approval or wishes. Everyone knew that if there was any money left after the cost of the headstone, it would be given to a charity from Jazmin's Memorial fund in her name (NOT MINE). Thank you to my family and friends who donated to the Jazmin I. Mitchell Memorial Fund. Not only did it support Jazmin's dream of a beautiful headstone but also those suffering from breast cancer. I know in my heart Jazmin would have done the same.

Now for the fun times ahead. I fly to Los Angeles Friday and get to stay at the Montage Beverly Hills. Mr. Kaseki upgraded us to suites and will be hosting a special dinner Friday night. I am most thankful to Gary and Debbie for their love and support during this year. Taking me to Los Angeles to celebrate my one year anniversary for the heart transplant, and staying in this beautiful hotel will be a moment to cherish. Saturday will be one year and we are going to celebrate at The Grill on the Alley in Beverly Hills. It's one of my favorite restaurants and Matthew will be joining us for dinner. You could say that it's my 2nd birthday. I now have 3. My first birthday November 22nd the day I was born; second birthday September 26th heart transplant and the third birthday, May 29th stem cell transplant. I have always loved celebrating my birthday so believe me I going to celebrate each one!

I'm feeling good except for the ankle. I will begin the new treatment plan next week. Also, on September 29th and 30th, I will be at Santa Clara Heart Transplant undergoing many tests on my shared heart. This is my annual checkup and yesterday I did all the blood work and x rays for this checkup. Mom and I will be staying in San Jose for the two days enjoying our stay at a beautiful hotel.

Now more than ever, my hope for everyone is to enjoy those special moments in time. I have many more moments in my life to enjoy.

Love,

Debbie

Stanford Appointment

2009-09-16T07:54:00.000-07:00

Yesterday I had an appointment at Stanford with Dr. Schier, Amyloidosis specialist. He is not encouraged with the current results of Decadron and Velcade and wants to get more aggressive with my treatment. He said that in Italy they are treating this disease aggressively with 2 days of Velcade instead of one. So his future treatment plan ordered for me will be an increase of the dosage of Velcade from 2.0mg to 2.6mg once of week for the next two months. He will monitor my lambha light chain count during this period to see if there is any change in the count. If after two months the light chain count is still at around 200, he will increase the number of doses to two times a week for two months. After that, he will discuss the treatment of starting Revlind (another chemo drug) with my heart transplant doctors. Revilind has been suspected of causing rejection to the heart and he wants to discuss this with the heart transplant doctors before. There has been no evidence connecting heart rejection with Revlind but Dr. Kevin Anderson has been on the drug and has had two 2R rejections. So they are looking closely at this connection.

I realized yesterday this is going to be a lifetime of drugs managing the disease. We can only hope the new drugs being researched now will cure this disease. There is a new drug being tested in England that has blasted amyloid out of patients bodies. It will not be available in the United States for two years. I met Tony from my Amyloidosis support meeting at Stanford yesterday, and he said Stanford has also been researching a drug to do the same time. So I need to continue fighting with the drugs available to continue this fight until the drugs are available here in the United States. I pray to God it comes soon because there are so many people out there suffering and dying from this disease. A cure must be found!

I feel blessed to have the time given to me to continue this fight. Without the heart transplant last year, I wouldn't be here to write this post. I have been given a second chance at life and a chance to fight this disease and wait for a cure.

There are so many things in my life for the future that keep me going on. My new baby grand child, my sons and my daughter Erin, Mark, Mom and my friends and family. You all make life worth living.

REMEMBER YESTERDAY,

DREAM ABOUT TOMORROW,

BUT LIVE TODAY!

Posting of Comments

2009-09-14T23:13:00.000-07:00

Dear Family and Friends,

From now on, I will be moderating all comments posted on my blog. I'm sorry to have received two hurtful postings last Friday night and decided I need to approve all comments before they are posted.

I want to say thank you to the person who wrote the comment posted below. It said it all!

Most importantly thank you to my family and friends who donated to the fundraiser.

I will always be grateful!

love,

Debbie

2009-09-14T22:07:00.001-07:00

New Picture of My New Grand Child

2009-09-13T11:09:00.000-07:00

Erin went to the doctor on Tuesday for her monthly checkup. Mark and Erin got to see the baby moving inside. They said it was so exciting! Erin thinks the baby looks like a "gummy bear". I can see, I think a little arm but its hard to see anything unless you are there while the sonogram is being done. Erin and baby are doing great. I'm just so happy to be a grandma. I don't care, and I mean it, what the sex is. I only want Erin and the baby to be healthy.

More pictures to come next month and then on November 17th we will find out the sex.

Love,
Debbie

Had a Wonderful Weekend

2009-09-07T19:00:00.000-07:00

I had a wonderful weekend at our trailer on Clear Lake. The weather was alittle cold but it was so nice to be up there. Our friends, Jeff and Christine stayed with us and we had so much fun. Matter of fact, they had so much fun they bought a trailer in our park, so they are neighbors here at home and at the lake. They are so excited about the beautiful trailer they got. Lots more memories will be made.

Saturday night our trailer park owners put on a BIG party and provide all the food. I ate so much including some wonderful desserts. We got to see everyone in the park and visit too. They had a band and DJ who play music until 10:00PM and then everyone went over to Richmond Park and dance the night away.

Sunday we spent all day and evening at Konotic Casino. I didn't go in because our friends Jane and Steve had their 5th wheel in the RV Park, so Mia and I stayed there visiting with everyone. We had dinner in Lakeport at "The Park Place" which was a very nice place. Mark played alittle more and I watch the fireworks show the casino put on and we were home and in bed by 9:30PM. Today we got up early made breakfast and drove to Potter Valley to see Mark's Mom. We got her some things at the store and did little odd ball chores for her. We had a nice visit. She is doing ok. She finished her chemo and the doctor said so far the disease is in remission. Thank God. We pray for her every day. I don't want her to be in pain.

I got home around 3:00PM and today I took Decadron so of course I'm wired up. I went grocery shopping, did laundry, made a banana cream pie for dessert and unpack. I'm making my onion soup potatoes and steaks tonight for dinner. YUMMM!

Tomorrow is chemo day at 11:00AM. I'm sad because tomorrow is heart transplant support meeting and I can't go because of chemo but I will be there next month. I miss seeing everyone, especially Tippi. We were going to go together and have a girls day but that can't happen now. I want to go over and spend time with her. We have so much fun together!

Erin goes to the doctor again tomorrow and I will have a new picture of my new grand baby on the blog tomorrow night. She is doing great and said we should see more in this picture. They are going to know the sex by November. I don't care what the sex is I'm just thankful and blessed that I will be here to welcome my new grand child. Thank God and my angel Jazmin in heaven.

The fundraiser was a complete success and I raised $4,000.00 towards the headstone. I will be able to donate in Jazmin's name $500.00 to Breast Cancer on the 25th of September when I go to the cancer walk in Los Angeles. I'm so excited to donate this money in my Auntie Mary Joan's name and my dear friend, Kathy Conley, who is a 5 year breast cancer survivor. I will also be celebrating my one year heart transplant date. Will it be a celebration, in a way but I will never forget and always be grateful to Jazmin. I will spend Sept. 22nd with Evelyn, Ben and the girls going to the cemetery to put flowers on Jazmin and Jamae's grave. I wish the headstone was placed but it will be there soon! I'm so grateful to my family and friends who donated to achieve Jazmin's dream! Thank you!

I forgot to say, that I have pictures from the fundraiser but I'm having trouble getting them on the blog. Some are really small and backwards. I'll keep trying to get them on. Christine did a wonderful job taking pictures of everyone. There are so many great shots!

Well have to get dinner going but wanted everyone to know I'm doing great. This weekend was full of memories I will cherish forever. To think last year at this time I was so sick and didn't even know if I would be here this year to attend our trailer park party, do the fundraiser or dream of holding my new grand child. Life is short and I will not take it for granted. I'm going to enjoy every moment!

How about you!

Love,
Debbie

What's Going On

2009-08-31T20:14:00.000-07:00

The week went by soooo fast! Didn't do much but just rested. I started riding my bike again for 30 minutes each day. Wow it my legs feel like I'm turning cement. I'm so out of shape. I can't wait to get back to my personal trainer, Tim Rogers and super slow. I am going to ask if I can go back after my big tests next month on the 29th and 30th.

I went to the oncologist today, Dr. Akthar. My lambha count went from 215 to 211. Wow big decrease. This is like chipping through cement. He was not concern and said we have to wait another 3 months after these 3 courses of Decadron and Velcade. Then he said they will decide what's next.

I hope everyone saw my new grandchild's sonogram picture. Erin is doing great. She will go to the doctor again on September 8th and I will have a new picture to share. I can't wait until I see that beautiful baby. That will be another moment that takes my breath away. I'm so lucky and blessed to have these moments. I will never take them for granted.

I'm working on downloading the pictures from the fundrasier. I hope to have them on the blog by tomorrow. They are wonderful and we had a great time that day. What a moment to remember!

Well I'll say goodbye for now. The Country Music Awards are on and I love country music! I saw my favorite hunk, Toby Keith at Konocti on Friday night. We sat row 5 from the stage. It was awesome! He is so good looking!!!!

Love,
Debbie

I'm Going to be a Grandma

2009-08-26T08:28:00.000-07:00

This is the most beautiful picture in the world. My first grand child. If there was ever a moment in time that took my breath away, it was seeing this picture for the first time. My sweet grand child.

Erin and Mark told us about a month ago that she thought she was pregnant but didn't want us to tell anyone until her doctor's appointment yesterday. Mark and Erin went to the doctor and took a sonogram (picture above). Baby Douglas is due April 13, 2010. They saw the baby's heart beating. Erin said it finally felt "real".

Mark and I are so proud and happy for our family. Of course, updates on my blog will be coming. I can't wait to post a picture of me holding my new grand child.

This is what moments are made of. I hope to have many, many more moments like this that take my breath away!

Love,
Debbie

Jazmin's Dream

2009-08-24T19:53:00.000-07:00

Jazmin's dream came true on Saturday. Jazmin dreamed of purchasing the headstone for her sister Jamae. On Saturday at the fundraiser, her dream became a reality.

My sincere thank you to all who attended and to all that donated to this beautiful cause. I will never be able to express the deep gratitude I have for my family and friends who supported me in making Jazmin's dream come true.

It will be a beautiful day, when the headstone is finally placed on the grave site for two beautiful angels in heaven. The headstone is so beautiful and it features two angels hugging each side of the headstone. Jazmin and Jamae deserved to have a beautiful headstone in their honor.

I will have pictures from the fundraiser posted this week. It was a fun day and a moment I will never forget. When Jane told me we made our goal, it was a moment of joy and one that took my breath away!

Thank you so much,

Love
Debbie

Dreams Do Come True

2009-08-19T21:37:00.000-07:00

Jazmin, my donor, had a dream. That dream was to purchase a headstone for her sister, Jamae. Not knowing a short time later, she would be with her sister. The headstone Jazmin picked out for Jamae will be a dream come true for her. I'm so blessed to have family and friends who have supported this fundrasier. I'm hoping on Saturday we will have enough donations to make this dream come true for Jazmin.

It will be a very special day when the headstone is installed and one that will definitely take my breath away!

Thank you to everyone who has donated so far. I really appreciate the love and support. I hope to see everyone on Saturday to celebrate this awesome day.

If you are unable to attend, donations may be sent to Jazmin I. Mitchell Memorial Fund, c/o Exchange Bank, 2201 Mendocino Avenue, Santa Rosa, Ca 95403.

Thank you again for your support.

Love,
Debbie

Feeling Good

2009-08-14T07:48:00.000-07:00

This week I took my second course of Decadron and Velcade. It is amazing how these drugs effect you. The nausea is gone and the appetite is back. I still feel the soreness around my neck and upper body on the 2nd and 3rd day after taking the drugs. It's not as bad as before because I know what it is caused from. I have one more week for this course and then I have a one week break. This will continue for another two months and then Stanford will decide the next treatment. So far everything is stable.

The fundraiser is going great! To date a total of $1,225.00 has been donated. I am so appreciative to everyone who has donated. The fundraiser next weekend will be so much fun! I'm hoping to collect the total $3,000 - $3,500 needed to purchase the headstone by next weekend. It will be a moment that takes my breath away when the headstone is installed.

Please send your checks to: Jazmin I Mitchell Memorial Fund, c/o Exchange Bank, 2201 Mendocino Avenue, Santa Rosa, Ca 95403. Thank you so much for your love and support towards this cause.

Tonight I'm going to dinner to my favorite Italian restaurant, Riveria. It's been so long since I have been there. It will be nice to see Rita and Lucia too! Tomorrow is Christie and Brian's wedding. Christie is Bob and Cindy Keyes daughter. It will be a beautiful wedding!

Sunday I have some things to do before the fundraiser and Maxwell will help with that. I want the yards to look nice before the fundraiser. I'm also going to try a few new recipes for dinner. I love Gilada from Everyday Italian and her pasta dishes. So I have one I want to try.

Have a wonderful weekend and make moments that take your breath away!

Love,

Debbie

Enjoying the Moments

2009-08-10T16:21:00.000-07:00

I have been so busy. Well I guess you can call it busy. I went to the lake on Thursday for two days. I met Marion and Terri there. I had a great time! Thursday night they made a wonderful dinner for me. Mia and I played all day and night. She loves the lake and the little trailer. The weather was a little cold. I even had to put my electric blanket on my bed at night. The days were windy and warm. I left on Saturday to go home. Erin's birthday is today! Happy Birthday Erin! Markie gave her a birthday party on Saturday night. It was so fun seeing all the kids and Martie and Jeff (Erin's parents) were there too! Lots of fun.

Sunday was a relaxing day. Mark went to Potter Valley to visit his Mom. She is very ill. Please say extra prayers for Mom Douglas. I stayed home to catch up on some things. Later that day, our neighbors, Steve and Jane, Jeff and Christine and Pam all came over for dinner. I made a spiral ham, my homemade scalloped potatos, roasted vegetables. Sooooo good! Jane made Mom's fruit salad. Yum! We sat around and just talked and listened to music. So relaxing! These are moments that mean alot to me. I want lots more!!!

Today I did some work and things around the house. I'm planning the fundraiser and organizing the details. It is going to be so fun and I'm looking forward to seeing everyone. Thank you to all who have donated so far. We are currently at $1,150.00. Our goal is around $3000 - $3500. This will purchase and install the headstone for Jamae and Jazmin. The day it is installed will be a moment to cherish in my life! I know Jazmin will be smiling down on us! Thank you! The information for the fundraiser is at the top but please send checks to the bank:

Jazmin I Mitchell Memorial Fund c/o Exchange Bank, 2201 Mendocino Avenue, Santa Rosa, Ca 95403.

Make moments that take your breath away each and every day! It's not the quantity of life but the quality. Make it a special one!

Love,

Debbie

First Day Back on Decadron and Velcade

2009-08-05T18:58:00.000-07:00

Yesterday was my first day back on Decadron and Velcade. Oh have I missed them. Yeah right!
Last night I was up until 1:30AM and fell asleep and woke up again at 4:00AM. Needless to say I'm tired tonight.

I leaving to go watch Mark and Markie play baseball in a championship game. It should be fun but cold.

Tomorrow I leave for my trailer on Clear Lake. I'm staying there until Saturday. I'm so excited to go up and relax. Marion and Teri are there and we are just going to relax and read books. It will be Mia's first time there and I know she will love it there. I'm hoping my little sister Kathy will come and visit too. Maybe even spend the night with me. That will be so much fun!

Well I will write when I get back from the trailer on Saturday.

I plan to make moments that take my breath away while I there.

Love,
Debbie

The Call Finally Came

2009-08-03T19:49:00.000-07:00

The call I was dreading finally came this afternoon. It was from Dr. Aktahar's office to schedule infusion of Velcade. I was surprised to hear that Stanford wants me to take Velcade twice a week instead of once of week. I will also begin taking Decadron too. I'm going to ask if I can take Decadron on Monday, so when I crash and feel terrible it will be on Wednesday and not on the weekend. I will find out tomorrow once I meet with the doctors. I realize this is going to be a lifetime of medication, doctors and tests. If I could "make a wish" it would that for the next year no medication, no doctors and no tests, but I know that won't happen. This is going to be for a lifetime and that's what is hard to accept.

I had a wonderful day yesterday. I went to Tori Puentes bridal shower. It was so nice and Tori got so many wonderful gifts. I'm so happy for her and Zach. The wedding in September will be beautiful. After the shower, I came home and Big Todd made a wonderful dinner for us including Tom and Jeanie Benton. We had filets, corn, bake potato, onion rings and I made a new recipe of Fried Mortazella sticks. Everything was so good! We talked about old times. Jeanie and I graduated from Ursuline together. So it was fun talking about the things we did.
That's what moments are all about. These were very special moments. Thanks Big Todd for a wonderful dinner. You and Shari are the best!

Well tomorrow will be my first day for Velcade. Hopefully, not too many side effects from it. Have a wonderful week.

Love,
Debbie

The Week Went By Fast

2009-08-01T07:44:00.000-07:00

It was a busy week running errands and doing things around the house. No doctors appointments until the end of August. I do have to do lab work next week to check cysolporine counts. The last two were weird numbers. On biopsy day the count was 998 and at the end of the week it dropped to 134. 134 is still low but Dr. Dana said not too bad. She would like me to be around 150 - 200. I will do it again on Monday to check.

September will be a busy month for doctor's appointments. I have heart biopsy, cardio gram, appointment with Dr. Shrier and Dr. Areria. At least I get a little break during the month of August. I will start the drugs Decadron and Velcade this next week. I'm not looking forward to that but I have to keep fighting this disease.

The fundraiser is going great! To date the total amount of money raised is $730.00. Please support me in raising money to purchase a headstone for my donor, Jazmin Iris Mitchell. She and her twin sister Jamae do not have a headstone for their grave and this will be a dream of Jazmin's if we can raise enough money. Jazmin before she passed away picked out this headstone for her sister Jamae, not knowing a year and half later she would pass away. I want to honor my donor and her family and raise enough money to purchase the headstone Jazmin wanted. Please send your donation to the Jazmin I Mitchell Memorial Fund c/o Exchange Bank, 2201 Mendocino Avenue, Santa Rosa, Ca 95403 if you cannot attend the fundraiser on August 22nd at my house. All donations will be greatly appreciated.

This weekend I have Tory Puentes bridal shower on Sunday. Todd and Sherri Schapmire along with their son Todd's in laws, Tom and Jeannie will be coming for dinner. I haven't seen Tom and Jeannie for a while so it will be nice to see them. Jeannie and I graduated from Ursuline many, many years ago. Of course, Big Todd will be cooking and he is the best! It's always nice having someone else do the cooking. It will be a fun day!

I hope you have a wonderful weekend and remember to make memories that take your breath away.

Love,
Debbie

THIS IS WHAT LOVE IS ALL ABOUT

2009-07-29T07:54:00.000-07:00

Auntie Mary Joan and her son, Lou walking her down the aisle

Auntie Mary Joan and Uncle Don taking their vows

Auntie Mary Joan and her daughter Shelly

The Newlyweds

Auntie Mary Joan, Uncle Don, Mark and Me

Love knows no time and it doesn't matter how old or young you are. When you are truly in love with someone, it is magical. I experienced that magic on Monday night. My Auntie Mary Joan and my new uncle Don married in a beautiful ceremony. On September 12th they will exchange vows again with all family and friends in attendance. It will be another beautiful moment!

Moments like these are what life is all about. Make the most of those moments!

Love,

Debbie

Weekend Moments

2009-07-27T07:16:00.000-07:00

I had a wonderful weekend filled with memorable moments. Friday, Saturday and Sunday I watched my sons, Mark and Maxwell play ice hockey in the Snoopy Tournament. It was so much fun watching them and also seeing all my hockey families. The boys team won the championship.

Matthew drove up from Los Angeles and spent the entire weekend with us. So I was very happy to have all three sons here. We went to breakfast, watched TV and enjoy each other's company.

The fundraiser is going great! We have a total donations to date of $680.00. I am so excited and grateful to those who have donated for their kindness. The fundraiser is August 22, 2009, noon to whenever. Come and enjoy food, drinks, music and swimming. A minimum donation of $20.00 per family or more will be appreciated. If you cannot attend, donations may be sent to the Jazmin I Mitchell Memorial Fund, c/o Exchange Bank, 2201 Mendocino Avenue, Santa Rosa, Ca 95403. Please share this information with your family and friends. This means so much to me and will be a moment never to forget if we are able to purchase this headstone. I look forward to the day when I can go to the grave site and see this beautiful headstone there.

Today I have to bring Mia to the vet for her first shots. Oh no, I remember those first shots when the boys were babies. I hated it. I hope she will do ok. She is so cute and is a joy!

Tonight is Auntie Mary Joan and Don's wedding. This will be a happy moment. I plan to enjoy each and every one. I'm so happy for both of them. They are an example of how life should be lived. It's not the quantity but the quality. Make each moment count! I love you Auntie and Don and am so happy for both of you!

Have a wonderful day and remember make moments that take your breath away!

Love,
Debbie

Forgot the Most Important Post

2009-07-24T07:59:00.000-07:00

No Amyloid in my new shared heart!!!

I am so blessed with a beautiful heart from my angel Jazmin Iris Mitchell. I will always be grateful to her family for this beautiful gift.

Love,

Debbie

Fundraiser

2009-07-24T07:52:00.000-07:00

The fundraiser for Jazmin and Jamae is going great. We have raised a total of $650.00 so far. Thank you to those who have donated. I really appreciated your love and support.

For those of you who don't know about the fundraiser. It will be held on August 22, 2009, noon to whenever. Come and enjoy food, drink, music and swimming. Everyone is invited. We are hoping to raise a total of $2,850.00 to purchase a headstone for Jazmin and Jamae. The fundraiser will be at my house, 2015 Dennis Lane, Santa Rosa. If you have any questions, please call me at 707-569-9024. A minimum donation of $20.00 per family. Please help me to raise enough money to show our appreciation to Jazmin's family for the gift of life they gave me. I will always be grateful. If you cannot join us, donations may be sent to Exchange Bank, Jazmin Iris Mitchell Memorial Fund, 2201 Mendocino Avenue, Santa Rosa, Ca 95401.

Love,
Debbie

Fundraiser

2009-07-22T07:28:00.001-07:00

Fundraiser

August 22, 2009

Noon - ?

2015 Dennis Lane

Santa Rosa

707-569-9024

Please join me in support of this fundraiser to raise money to purchase a headstone for Jazmin and Jamae Mitchell. Come and enjoy an afternoon of food, drink, music and swimming. Minimum donation of $20.00 per family. If you are unable to attend please send your donation to Debbie Douglas c/o Jazmin Iris Mitchell Memorial Fund, 2015 Dennis Lane, Santa Rosa, Ca 95403. This fundraiser is very important to me and I hope you will support this cause. It will be a way to express our heartfelt gratitude to Jazmin's family for the beautiful gift of life!

Love,

Debbie

Joey and Rachel's Wedding

2009-07-21T20:33:00.000-07:00

It was a beautiful day!!!!

Jeff and Christine's Wedding in Lake Tahoe

2009-07-21T17:38:00.001-07:00

Neighbors

Steve having too much fun!

Jeff and Christine

Jeff and Christine's wedding in Lake Tahoe was beautiful and so much fun. It was great having all our neighbors there to share this special day. Congratulations to Jeff and Christine!

A Great Weekend In Lake Tahoe

2009-07-21T17:30:00.000-07:00

I was on the top of the world!

Emerald Bay

I had a wonderful relaxing weekend in Lake Tahoe. I drove to Emerald Bay on Saturday and took these beautiful pictures. I felt like I was on the top of the world!

I Finally Have a Little Girl

2009-07-21T17:19:00.000-07:00

Mia

She is so sweet and lovable!

A Big Thank You

2009-07-21T07:14:00.000-07:00

A Big Thank You to

David Codding and My Sister Mary Ann

for the generous donation to the fundraiser.

My heart is so grateful for this gift!

Thank you so very much!

Fundraiser Date Change Again

2009-07-21T06:55:00.000-07:00

Sorry for the change in the date again for the fundraiser. Just found out that Auntie Mary Joan and Don will be having their wedding celebration that day and I will not miss that.

So the fundraiser will now be on August 22nd, same time and same place. This is very important to me and I hope you will support me.

On Sunday, I visited the grave site with Jazmin's Mom. It was very sad to see a "postcard size" piece of paper in the ground with their names and the dates they were born and passed away. I want to honor them by making this dream come true for Jazmin. Jazmin picked out the headstone for her sister, not knowing that a year and half later she would passed away. Please help support this beautiful gift.

love,

Debbie

Fundraiser

2009-07-16T15:47:00.001-07:00

FUNDRAISER DATE HAS CHANGED TO AUGUST 22, 2009

PLEASE JOIN THE FAMILY AND FRIENDS OF

DEBBIE DOUGLAS

IN A FUNDRAISER FOR

JAZMIN AND JAMAE MITCHELL

SATURDAY, AUGUST 22, 2009

NOON - ?

2015 DENNIS LANE

SANTA ROSA

707-569-9024

www.debbiedouglas.blogspot.com

Jazmin’s heart beats a new life in our friend Debbie Douglas. The family and friends of Debbie are so grateful to Jazmin’s family and their amazing gift of life! Jazmin was preceded in death by her twin sister Jamae. Together Jazmin and Jamae lay in rest together in peace just as they did so many short childhood years ago. Jazmin’s family is unable to afford the cost of a headstone marking their daughters beautiful lives. We as family and friends are having this fundraiser to raise $2,800.00 necessary to purchase the headstone for Jazmin and Jamae. Your small donation of at least $20.00 per family will help us raise the money in support of our heartful appreciation to Jazmin’s family. Come and enjoy an afternoon of food, drink, and music. If you cannot attend and would like to donate, please send checks to Debbie Douglas c/o Jazmin Iris Mitchell Memorial Fund, 2015 Dennis Lane, Santa Rosa, Ca 95403.

Doctor's Appointments Kaiser and Stanford

2009-07-15T06:39:00.001-07:00

Yesterday was a long and busy day. My day started at 6:00AM driving to Santa Clara for my 8:00AM appointment for heart biopsy. As I waited for over an hour in the waiting room they finally came and said they were running late and to go to the clinic first. I went to clinic where I had an echo. The echo went well and Dr. Parak said the heart looked great. All functions were perfect. Next was the doctor's visit to go over medicines and any problems I was having. That's when things went bad.

I found out that my Lambha light chain count after the stem cell transplant did not go down but up from 190 to 215. As you know, that is the number to judge the progression of my disease, Amyloidosis. I was hoping the number would drop. So now Stanford wants me back on Decadron and Velcade again. I hate Decadron so much. It makes me feel so sore and I gain weight too. I was so depressed. It's hard staying positive when you go through a horrible experience like stem cell transplant and it doesn't work. The doctors really don't know why and can't say whether the numbers will drop as time goes on. This disease is just so mysterious. Each patient responses differently and that is why it is so hard to treat. I realize now that my life forever will be doctors, appointments, drugs, biopsy etc. I wanted complete or partial response to take a break from all this but it's not going to happen. I will keep fighting but it's getting harder each time.

Today I wait for the results of my heart biopsy. I should know by the afternoon the results and will let everyone know. I'm hoping to get good news. I could sure use it!

I look forward to the weekend when I get to go to Lake Tahoe. My neighbor friends Jeff and Christine are getting married there. All the neighbors are going and it will be so much fun. The weather will be perfect too. On Sunday, I will be meeting Evelyn, Jazmin's Mom. She is taking me to the cemetery so I can put flowers on Jazmin and Jamae's grave site for their birthday. I wish the beautiful headstone was there already but I know that the fundraiser will be successful and they will have a beautiful headstone. Oh by the way the fundraiser date will have to be changed to September sometime because Evelyn's little girls are in a wedding on the 29th of August and I want them there. So look for the future date soon. I need to check out some things before I decide on the date.

Have a wonderful day and make those moments count.

Love,
Debbie

A Special Day

2009-07-13T21:11:00.000-07:00

A special prayer to my donor Jazmin and her sister Jamae today on their birthday.

My love to them both always,

Debbie

This is what it is all about!

2009-07-13T08:39:00.000-07:00

Views from the Highway 29

Relaxing! This is what it is all about!

The trailer on the lake.

Views from the lawn area.

I had a wonderful 3 days at the lake. This is what life is all about! Enjoying each and every moment.

I got to the lake on Friday at noon. Cindy Keyes was there and we spent the next 7 hours sitting on the lawn area talking, eating, drinking (no alcohol) and reading. The weather was perfect! That evening Bob fixed us a wonderful dinner and I went to bed early. I now have a TV in my little bedroom so each night I would get in bed and watch the news before falling to sleep. In the morning I would wake up at 7:00AM, make my coffee and jump back in bed to watch TV and have my morning coffee until 9:00AM. It was so relaxing.

Saturday Bob and Cindy had to leave to go back home but Linda and Scott came up. I got a surprise because Linda brought her grand kids, Kennedy and Kiley to play at the lake. We had such a wonderful time. The girls are sooooo cute and sweet. Kiley kept looking at me funny with my cap on and finally asked where my hair went. I told her that I was sick and that the doctor gave me some medicine to make me feel better but it took my hair away. She then asked to touch the top of my head to feel the new hair growing. It was so cute and made me cry! We had another wonderful day playing with the girls (although I couldn't do much but watched) it was relaxing. That night we sat on their deck talking with friends until 11:00PM. Wow I was so surprised I stayed up that long. Scott walked me up to my trailer and I slept great that night.

Sunday morning I did the same sat in bed with my coffee watching the food network shows. I got up and made breakfast and started organizing things in the trailer. I haven't been there for over a year and there were things I wanted to clean up and organize. I love my little trailer so much. This was the first time I have been able to stay there by myself and enjoy the quiet time. I have a CD of the songs from "Dirty Dancing" and played that so loud while I cleaned. I like to sing and listen to my music. I left the lake around 2:30PM with sadness. Don't get me wrong I love my home but being there is like "heaven". Look at the pictures above and decide for yourself. Can't wait to go back up again!

Today I am going to rest because I have a very big day tomorrow. I called Charlene at the heart transplant center to look up my results of the light chain count. I will let everyone know my count once she calls back. This is very important to see the progression of my disease and whether or not the stem cell transplant stopped the progression. I'm confident it did but need confirmation. I also have a heart biopsy but feel good about that because my shared heart is doing just fine. The fatigue I feel is mostly from the stem cell transplant and is very common. I will continue resting and gaining strength. I'm hoping to start walking again too.

I will be posting the invitation to the fundraiser for my donor, Jazmin on August 29th. It will be a celebration of my recovery and my heartful gratitude to Jazmin. I'm hoping to raise enough money to purchase the headstone form Jazmin and her sister Jamae. Look for the invitation coming soon!

Have a wonderful day and make it a memorable one too.

Love,

Debbie

Going to the Lake

2009-07-10T08:10:00.000-07:00

Today I will be leaving to go the trailer on Clear Lake. I'm excited because it is so peaceful and beautiful there. My friends Bob and Cindy Keyes will be there so it will be fun. I'm hoping Linda and Scott will come up tomorrow but I'm not sure yet. Mark has a bachelor party for Jeff on Saturday night so I don't want to be here at home for that.

I'm feeling good. Still tired but getting stronger each day. I still have problems eating dinner at night (nausea). I eat cream of wheat to get my heart pills down. Other than that I'm doing great.

I have my doctor appointment Tuesday with the Amyloidosis doctor to discuss the results of the stem cell transplant. I'm hoping my light chain count is down and it was successful. I have to be positive.

Have a wonderful weekend. Make those moments count.

Love,
Debbie

Doctor's Appointment At Stanford

2009-07-07T06:47:00.000-07:00

Yesterday I had a doctor's appointment with Dr. Aeria, Bone Marrow Transplant. I did my lab work before meeting with Dr. Aeria. All blood work was perfect. White blood cell count is now up to 9.2, platelets are at 357 and Hemocrit was at 32.9. Dr. Aeria was very pleased with my blood work results and said everything is going along fine. I have another appointment with her on the 20th.

Next week on the 14th, will be a busy day with heart biopsy at 8:00AM, support group meeting at noon and then at 3:40PM appointment with Dr. Schrier at Stanford. Dr. Schrier is the Amyloidosis specialist at Stanford. I will do my blood work this week for light chain count before my appointment with Dr. Schrier. This test will determine where my counts are after the bone marrow transplant. I'm hoping we see a decrease and that my disease has stopped. I have been told it could take up to one year before they know for sure the true numbers and whether or not the bone marrow transplant was successful. Time will only tell. I have to stay positive especially after all I have been through.

My sister Kathy met someone this weekend who gave her a great quote that I want to share with you. "DREAM BIG ANYTHING IS POSSIBLE". That is what I do each and every day. I hope you do too!

Today is a rest day. Yesterday traveling to Stanford and waiting for results and doctor makes for a long day. I took Mom to lunch at Angelino's in Sausalito. We had a wonderful lunch with capriese salad and gnocchi. The weather was beautiful and the views of San Francisco was awesome. There was a beautiful yacht sitting in the Sausalito bay. Talk about big dreams. I thought what fun it would be to cruise around the world in a beautiful yacht like that. I saw beautiful yachts in Monte Carlo but this one was huge! Remember "Dream Big Anything is Possible"!

Have a wonderful day!

Love,
Debbie

Special Moments in the Making

2009-07-05T21:06:00.000-07:00

I had a wonderful weekend. I can't say it any other way but "God, I'm so glad to have these moments". I spent the entire weekend at my trailer on Clear Lake. The weather was hot and it caused a little swelling of ankles but each morning it was gone.

Our friends, Todd and Sherri Schapmire stayed with us on Thursday night. Todd cooked a wonderful dinner of salmon and steak. Yum, it was good and I ate it. Matter of fact I ate three meals a day which is more than what I have been eating. We stayed at the trailer all day Friday just talking and laughing about all the years of traveling with the boys when they played hockey together. It brought back so many wonderful memories. I enjoy their company so much.

Saturday night Scott and Linda had a luau at their trailer. We all dressed up in Hawaiian clothes and ate great food. There were about 30 of our friends from the trailer park there. It was alot of fun. Konacti had fireworks on the lake. I was too tired to go out on the lake to watch. Our friends Jim and Pricella have a patio boat and took everyone out. It would have been fun but I can't push it. I went back to the trailer with my kids, Mark, Erin and Maxwell. We had a wonderful evening. I fell asleep watching TV on my new little TV in my bedroom and slept till 8:00AM. It felt so good.

Big Mark wanted to leave by 1:00PM but I refused. Mom said Santa Rosa was all cloudy and cold. I told him "NO", I'm not going. We stayed until 3:30PM and then came home. I get so sad when I have to leave there. It is like paradise to me. So quiet with beautiful trees everywhere, the water and the birds. I love getting up before anyone, making my coffee and sitting down by the lake watching the sun come up. It is a beautiful site and a moment that takes my breath away, especially now. I'm going up again this coming weekend on Friday and I hope Mom will come with me. Just the two of us. It will be so fun!

I have a special request from ALL family and friends and hope you will do this one thing for me. I am planning a fundraiser for my beautiful angel, Jazmin on August 29th. I'm going to celebrate my life and the life of Jazmin and Jamae. The fundraiser is for a headstone for the girls. They don't have one and I want all of us to work together to make it happen. Mark and I will have the biggest party at our house that day and I hope all my friends and family will be here to help celebrate this beautiful moment. Invitation will be posted on my blog soon with details. Look for it!

Well I have been going on and on. It's getting late and I should go to bed. I hope you had a wonderful weekend too. Just remember to make those moments that take your breath away. I made lots this weekend.

Love,
Debbie