Erin's Baby Shower

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

What's Been Going On

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

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

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

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

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