Hailey Lee Douglas
5 months old
Brother Markie calls her "Hailey Bug"
Wednesday, May 9, 2012
NEW TREATMENT PLAN
Yesterday as I said in my last post was D-Day. Met with Dr. Schrier at Stanford. He is the specialist for Stanford in the Amyloidosis Center. He was not happy about the recent results of my heart biopsy where one sample showed signs of the disease. I know now where it is located but how much and if there are any other spots we will never know. He also felt due to these recent results that my lambha light chain count at 114 is too high and wants me at normal 26.
So here we go. I'm staying on Dexadron and Velcade every week. The new treatment is a more agressive chemo, which is the same as I took during stem cell transplant. This is called Cytoxan. I will be taking it by mouth every day. I start out for the first 5 days 200mg and on the 6th day I will take lab work to be sure my white, red cells and platelets are ok. If so, the dosage goes up to 250mg for the next five days and again on the 6th day, check labs and if ok up the dosage to 300mg. Dr. Schrier wants to get me to the highest dosage my body will handle and keep me there for 30 to 60 days until the count goes down.
Side effects are not fun. The same as the stem cell. Hair loss which I don't care. I want to be healthy and protect my new heart. I want more TIME! Neausa, mouth sores, fatigue, all the normal side effects from chemo. I will also have the same chemo effects I suffer now from the Decadron and Velcade on top of all these new ones. I just want to feel good and I so afraid now that this is going to knock me down good.
I'm so scared!
Well this new treatment should start next week and I will update on my progress. I have also contacted heart transplant with the new treatment and wanted to know about future treatment of the heart. I think I will be doing heart biopsy every 3 months instead of 6. I will see what Dr. Dana says today.
I always think about how blessed I am. I have a wonderful husband who loves me and takes very good care of me. He just wants me to be happy and does everything he can to be sure I'm happy. I love him so much. My sons, daughter in law and grand kids are my world. I look into those babies eyes and hope and pray I will be here to see them grow up. Then there is my Mom. What can I say. She has been through hell with me. Seeing her daughter go through a heart transplant, chemo, stem cell transplant and all the other treatments and now this. My brother and sisters are always pushing me to be strong and fight. Then there are my friends. We have such dear friends, too many to list but they are always here pushing me too to fight. My donor family, Evelyn, Ben and the girls blessed me with the most wonderful gift and I thank and pray for them each day. They will always be apart of my life. Forever!!
So, remember every moment is a gift!! Go out and make moments that count.
RIP Auntie Josie. We all love you!
Love,
Debbie
So here we go. I'm staying on Dexadron and Velcade every week. The new treatment is a more agressive chemo, which is the same as I took during stem cell transplant. This is called Cytoxan. I will be taking it by mouth every day. I start out for the first 5 days 200mg and on the 6th day I will take lab work to be sure my white, red cells and platelets are ok. If so, the dosage goes up to 250mg for the next five days and again on the 6th day, check labs and if ok up the dosage to 300mg. Dr. Schrier wants to get me to the highest dosage my body will handle and keep me there for 30 to 60 days until the count goes down.
Side effects are not fun. The same as the stem cell. Hair loss which I don't care. I want to be healthy and protect my new heart. I want more TIME! Neausa, mouth sores, fatigue, all the normal side effects from chemo. I will also have the same chemo effects I suffer now from the Decadron and Velcade on top of all these new ones. I just want to feel good and I so afraid now that this is going to knock me down good.
I'm so scared!
Well this new treatment should start next week and I will update on my progress. I have also contacted heart transplant with the new treatment and wanted to know about future treatment of the heart. I think I will be doing heart biopsy every 3 months instead of 6. I will see what Dr. Dana says today.
I always think about how blessed I am. I have a wonderful husband who loves me and takes very good care of me. He just wants me to be happy and does everything he can to be sure I'm happy. I love him so much. My sons, daughter in law and grand kids are my world. I look into those babies eyes and hope and pray I will be here to see them grow up. Then there is my Mom. What can I say. She has been through hell with me. Seeing her daughter go through a heart transplant, chemo, stem cell transplant and all the other treatments and now this. My brother and sisters are always pushing me to be strong and fight. Then there are my friends. We have such dear friends, too many to list but they are always here pushing me too to fight. My donor family, Evelyn, Ben and the girls blessed me with the most wonderful gift and I thank and pray for them each day. They will always be apart of my life. Forever!!
So, remember every moment is a gift!! Go out and make moments that count.
RIP Auntie Josie. We all love you!
Love,
Debbie
Tuesday, May 8, 2012
HAD THE BEST WEEKEND EVER! TODAY IS THE D-DAY!
But as my life has been going. Today is D-Day. Appoointment at Stanford at 3:30PM with Dr. Schrier. Due to the recent results I have no idea what he is going to do. I know one thing I'm going to ask to be on chemo everyweek. I supposed to be off next week but I don't want to. I have to be aggressive in fighting this disease. We will see what he has in mind.
My heart has not had those heavy palpapations in the past few weeks but just little ones. I have cut out caffained coffee and trying to have less stress. So we will see in the next few months but heart transplant is saying that I will have to have heart biopsy every 3 months now.
Today is Tuesday and its nausea day. I'm not able to eat much except cream of wheat. Then of course by tomorrow the soreness and fatigue start and that lasts until Saturday. Staying home this weekend and celebrating Mother's Day with my mom here. The grand kids are coming over to visit and have dinner too.
It will be a fun day!
Last Friday, I was a model again this year in the Go Red Dress for Women and the American Heart Association. I had so much fun. I saw old friends who are heart surviors and met new friends. I took Mom too and she love it. On May 17th, Mom and I are going to a dinner presentation at a winery to hear Dr. Jeffrey Wolf from UCSF talk about multiple meloluma. Although I don't have that, he is also a specialist in Amyloidosis and treats some of my support group friends. It should be interesting and its FREE!
Happy 5 month birthday to my little Hailey. Markie calls her "Hailey Bug". She is getting so cute. I had her chuckling yestereday. She smiles and coos now and is trying to roll over. Yesterday was a good day. My niece Shannon and her baby boy Cashious, Brittary and Daniel (Brittney is due in August) came to visit Mom and I. We had babies every where. It was fun! Little Markie was playing hockey with Cashious and was trying to check him. Funny but not a good idea. These are the moments that I'm living for.
Well its time to get ready to drive to Stanford. Will post results of doctor appointment tommorrow.
Every moment is a gift! Go out and make those moments count!
Love,
Debbie
Friday, April 20, 2012
Moments in Time Mean More Today Than Yesterday
More than ever moments mean so much to me now. Time spent with my family and friends give me strength and courage to fight on.
I have had so many disappointments in the last few months and I think my new heart is hurting. I have been experiencing flutters and palpitations and have been hooked to a heart monitor for weeks. The doctors felt the disease has progressed into the heart and on Monday it was confirmed. Amyloid has progressed into my new shared heart. Although this is scary I am going to keep fighting. My doctors are monitoring my heart and the progression of the disease so I feel confident. I have to remember that my old heart was not treated for the disease and that is why it failed but I am on chemo every week (decided to stay on every week after this latest news) now and hopefully the progression will be slow. I plan to meet with heart transplant at the end of the month just to be sure of future treatment of the heart. I had an emergency heart biopsy last week and the pressures and echo were normal at this time. This is going to be something they will be checking more closely now.
In the meantime, moments mean more to me NOW!!!! I don't want ugly, negative people in my life and I have surrounded myself with those who love me and care about me.
I have had so many disappointments in the last few months and I think my new heart is hurting. I have been experiencing flutters and palpitations and have been hooked to a heart monitor for weeks. The doctors felt the disease has progressed into the heart and on Monday it was confirmed. Amyloid has progressed into my new shared heart. Although this is scary I am going to keep fighting. My doctors are monitoring my heart and the progression of the disease so I feel confident. I have to remember that my old heart was not treated for the disease and that is why it failed but I am on chemo every week (decided to stay on every week after this latest news) now and hopefully the progression will be slow. I plan to meet with heart transplant at the end of the month just to be sure of future treatment of the heart. I had an emergency heart biopsy last week and the pressures and echo were normal at this time. This is going to be something they will be checking more closely now.
In the meantime, moments mean more to me NOW!!!! I don't want ugly, negative people in my life and I have surrounded myself with those who love me and care about me.
MANY PEOPLE WILL WALK IN AND OUT OF YOUR LIFE, BUT ONLY TRUE FRIENDS WILL LEAVE FOOTPRINTS IN YOUR HEART!
IT'S NOT WHAT YOU GATHER, BUT WHAT YOU SCATTER THAT TELLS WHAT KIND OF LIFE YOU HAVE LIVED!
We should all live by these simple but true words!
I have been enjoying my time with my grand children. I watch both of them on Monday with Nana aka Nonie. On Thursday, I have Hailey to myself and we are bonding. Little Markie doesn't really like Nana paying attention to little sister, so its hard when both are here by myself. I am so blessed to have these moments with my grand children.
I also have been doing alot and I mean alot of cooking. My favorite project right now is cooking with different vegetables. I make a vegetable Parmesan every week for my Mom and I. It is sooooo good. All veggies and so healthy. It is so funny every night Maxwell asks what's the surprise dinner tonight. So far Mark and Maxwell are enjoying my new creations.
Today is my down day for chemo. I'm really sore and tired. I'm not complaining anymore because I realize I have to fight this disease and chemo is the only thing that will give me time. That's all I want is TIME!
Love this weather and looking forward to spending more time at the lake house. Mark and Jeff are going this weekend to fix our metal shed roof. I have a birthday party for little Cashious, Shannon's son who turned one on April 18th. My sister Kathy will be spending the weekend with me and I'm excited. It will be a girl's weekend with my sister Mary and Mom too.
Please keep the prayers for me going. I really have a fight on my hands. Also, pray for those who are suffering from life threatening diseases. I see this every week when I go to the infusion center and it breaks my heart. Be thankful for what life you have!
Love,
Debbie
Tuesday, April 10, 2012
Markie 2 Years Old & Hailey 4 Months Old
Markie loved his Birthday Cake
Hailey is 4 monthsWow can't believe how fast 2 years has gone by. My little Markie turned 2 on April 6th and Hailey turned 4 months on April 8th.
Everyday is a gift and these moments are so special to me!
love,
Debbie
Wednesday, April 4, 2012
HAPPY 35TH WEDDING ANNIVERSARY
On Monday, April 2nd, Mark and I celebrated our 35th wedding anniversary. Scott and Linda Ford came over last night to watch the Sharks beat Dallas and brought us this beautiful cake. That was so sweet! Can't believe how fast 35 years has gone by. Mark and I are so blessed. We have a beautiful family, grandchildren and many wonderful friends. We don't need alot of money because we feel richer than others to have these blessings. Happy Easter to all. We are having Easter dinner at Erin's Mom and Jeff's house. Little Markie will get to have an easter egg hunt and this year I'm sure he will know exactly what's in those little plastic eggs. He will be 2 years old on Friday, April 6th. We will celebrate a family birthday party on Friday and then he will have his big party with his little friends on April 14th. I have been watching both Markie and Hailey on Mondays. Nonnie aka Nana Salvato comes over to visit and help. Then on Thursday I decided to watch Hailey only. It has given me the time to bond with her. Markie is so jealous and wants Nana only on Monday, so its hard to bond with Hailey. I am really enjoying my time with them. Can't wait for the summer months where I can bring Little Markie to the lake with me and Papa. There are so many little kids there in the summer he will have so much fun.Stop and enjoy every moment because every moment is a gift!
Love,
Debbie
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