The Journey Begins

When I started this blog in October I never wanted to use the word "journey". I thought a "moment in time" meant something. I felt this was just a "moment in time" and I will get through it. Things have changed and I realize now that a "moment in time" was receiving my beautiful strong heart but "the journey begins" to fight the disease Amyloidosis.


The journey will begin next Friday at 9:00AM, when I will start the chemo drug Valcade. This drug is administered intravenously with a push. I will continue the drug Decadron with this new chemo drug for 4 weeks and then take a break off both drugs for 2 weeks. The cycle repeats for 4-6 months. Each month the doctors will test my blood to determine the Kappa and Badda Light Chain count to see if the numbers are decreasing. I took blood tests today and will know next week what my count for a baseline will be. The last count was done on 11-14-08 and was at 206. To be considered in remission this number needs to be 19 or lower. So I have a long way to go. I pray the chemo drug therapy will work because the next treatment involves a stem cell transplant. I have said it before, this is not my favorite choice but I will do it to save my life.


Dr. Kevin Anderson has just finished his first cycle of Valcade and Decadron. The side effects are very similar to Decadron but at a higher level of intensity. There are many other side effects and the doctors say each person will experience those side effects differently. Dr. Kevin said so far hasn't been too bad but as the cycles increase and the drug builds up this could change. I will have to look at this as a journey and take it one step at a time. So the journey begins!


I don't have to many plans this weekend except getting nails done and hair dyed tomorrow. Zach Brown and Tori Puentes are engaged and are having an engagement party tomorrow. It will be fun to see all the kids and parents from hockey. Zach and Markie played ice and roller hockey together for many years since they were 12. I have alot of great memories traveling everywhere in my mini van from one ice rink to the next roller rink to play hockey. My most favorite memory is how all of us Moms would meet to exchange pictures and scrapbook together. We were very close and still are! Those moments will always take my breath away!


Mark and Matthew leave on Thursday to visit Maxwell in Canada. I'm so jealous cause I would love to go and see Maxwell play hockey. They are going to have so much fun!


I hope everyone had a safe and joyous New Years. My wish is for 2009 to bring happiness, health and prosperity to all. Especially enjoy those special moments in time that take your breath away!


Don't forget those special prayers especially for my donor family. They are always on my mind and I wouldn't be here to begin this journey if it wasn't for their gift of life. They gave me a second chance of life to begin this journey. I will always be grateful!

Love,
Debbie

Happy New Year

Wishing everyone a blessed 2009! Tonight Nana and I are spending the new year together. Mark went to the casino in Lakeport with our neighbors for the evening. I can't go to casinos anymore because of the smoke, the risk of getting sick and the air flow in those places. So Nana and I just got home from having a beautiful dinner at Rivera. Rivera is a small Italian restaurant owned by Lucia and Rita. They called me almost everyday when I lived at the hotel worrying about me after the heart transplant. So when I called them to let them know I was coming they were so excited. They gave me a beautiful orchid plant and Lucia cooked a fabulous dinner.
Nana and I had a wonderful moment in time. Gary and Debbie, after I paid, had already paid for our dinner. Rita came running out to tell me it was already taken care of. How many thank yous can I say to Gary and Debbie. They have been my angels and I love them both so much. So now we are relaxing in our reclining chairs watching a movie called "Almost Famous" with Kate Hudson. Nana and I are not too expressed. It's not Sex in the City, that's for sure! I watch one of the series to Sex and the City each day I ride my bike for 45 minutes. My heart is pumping and I don't think its the bike ride. HA HA!


Today I met with Dr. Acktar, Chemo Doctor from Kaiser. He went over the formal report from Stanford with Mark and I. Nothing I don't already know. I will have more blood work done on Friday to determine the Amyloidosis count to start a baseline. My last count was done on 11-14-08 and was 206. The normal range is 19. I have a long way to go but they feel confident with the second chemo drug Valcade, and what I'm taking now Decadron, that the disease will be put in remission. I will start Valcade next week and I am ready to get going to put this disease in remission. 2009 will be a good year! I will be healthy and enjoy every moment!


I hope everyone has a safe and joyous New Year! Please say a prayer for my donor family giving them strength in their time of sorrow. My love and gratitude goes out to them tonight. I want them to know they are always in my prayers and that Jazmin is with them always!

love,
Debbie

The New Year

2009

What does it mean? For me it means second chances, time to reflect on the year past and just how grateful I am to be sitting here writing this post.

I also have mixed feelings. I hope everyone read my last post on December 24th, honoring my angel, Jazmin Iris Mitchell. I have so much to be grateful for and to look forward to in the new year but my feelings deep inside are hurting for my donor family. How can I be so happy when they are faced with so much sorrow. That's when I ask for help from God and my angel. I hope my donor family knows each day doesn't go by without them on my mind. I pray for them and can't wait until the day I can show them my love and gratitude.

So, 2009 I plan to spend it fighting this disease and being healthy. I want to do the things I have put off for so long. First on my list is to continue my lessons in Italian, finish my photo album from my trip to Italy in 2005 and start my other albums, exercising and eating right and enjoying every moment and I mean every moment!

Today was really FUN! I got to drive for the first time in almost 4 months. It felt so good to get my little red car out on the road, turn the music up really loud and just drive. It would have been really fun going topless (the car not me, HA HA). I felt free!! I really thought about taking a drive to Palm Springs. Wow wouldn't that be fun! I love the hot weather, water and just relaxing. Well, I can dream! Reality sets in and I realize I can't go that far right now but soon! It's amazing how much better you feel being able to do things on your own. It's very liberating!

Christmas was wonderful except I was really sick that day. I'm not sure yet if it was a flu bug or spicy Italian food I ate the night before, but I was really sick. I couldn't take my meds and Dr. Dana was threatening to put me in the hospital to infuse meds. So she gave me time to get them down and keep them down. It took until 3:00PM just to get the morning ones in and then I started all over again at 6:00PM. I felt better but a little wiped out the next day. Maxwell left for Canada on Friday. Matt and I drove to the airport to drop him off and it was very sad. I miss him so much. He stayed by my side the whole time he was here. We had so much fun. He is such a great son and I'm so proud of him. He's back in Innisfil playing hockey. The airline lost his new sticks so he's not happy right now. Hopefully, they find them soon! Matthew left on Sunday with Cassie, his little dog. Grandma (me) babysit Cassie the whole time she was here. She slept on my lap in the chair all day and all night. She is so loveable. I know she misses me now. It was great having all three of my boys here and of course my beautiful daughter (I hate the word daughter in law, and Erin knows it). You forget all the funny things they say and do when they are together. Why do they have to wrestle with each other or their dad?

Wednesday I have my first appointment with Dr. Atktar who is the chemo doctor here in Santa Rosa. He will be treating me and prescribing the chemo drug Valcade. I should start that next week. Hopefully, not too many more side effects from the ones I have already. I will take Valcade once a week for 4 weeks and then have 2 weeks off and then back on. As I said before, Stanford wants me to do this for 4-6 months and if my count for Amyloidosis is not decreasing then I have to consider the stem cell transplant. It's going to work!

Need to close for now have to go back to Kaiser to pick up my refill of meds. Have a wonderful evening. I posted this saying a while ago and wanted to post it again. Markie and Erin gave me a beautiful silver heart and this is inscribe on it:

LEARN FROM YESTERDAY

LIVE FOR TODAY

HOPE FOR TOMORROW

Love,

Debbie

Jamae Domonique Mitchell and Jazmin Iris Mitchell

Twins for Life

Jazmin Iris Mitchell

MY ANGEL

Jazmin Iris Mitchell was a beautiful 18 year old woman. She was loved by her family. I am told she loved the color purple, dreamed of traveling, becoming a veterinarian, was engaged to be married to Marco, honest, loving, strong, compassionate, accomplished artist and is my angel!

She is my donor and I will always be grateful for the gift that she and her family gave to me on the night of September 26, 2008. I want my friends and family to read and see what a beautiful woman she was.

How do you say thank you to a family who is still grieving the lost of a child. I have lost two children myself, my twins Joseph and George. Tragically, my donor family has also lost two children, twin daughters Jamae on December 2, 2006 and now Jazmin on September 22, 2008. My twins were babies and yes the hurt never goes away but nothing compares to the lost of two daughters at the prime of their lives. I want so much to hug their Mom Evelyn with my shared heart, her daughter Jazmin’s heart. I want her to feel Jazmin beating inside me. Evelyn has said after the holidays that we will meet and I will hold her so tight, because I know that is what Jazmin would want me to do. I can’t wait for that moment in time. It will definitely take my breath away!

I look and talk to Jazmin each morning. I thank her and tell her we have a full life to live. She wanted to travel and I promised her good friend Sonia that I would take her traveling and see the world. I plan to go back to Italy in two years when the doctors give me the ok to travel. I want to see Paris, Ireland, Greece and even places in the United States like Washington DC, Niagara Falls, The Liberty Bell, Lincoln Memorial, Yosemite, Vietnam War Memorial, and Arlington Cemetery. She will be with me sharing these moments.

Jazmin saved many lives that night and is truly a HERO! Her life will always live on in all of us who received life saving organs from this beautiful woman. I know I will always cherish my shared heart. I speak of our heart as “shared” because my good friend Doctor Kevin Anderson, who received a heart transplant on August 15, 2008, first spoke of his donor’s heart as shared. I thought that was very interesting to call our new hearts “shared” but he is right. Jazmin lived for 18 years with the heart that is now beating inside me and I will live the rest of my life with her heart, so we are sharing this beautiful strong heart.

So my wish is to honor this beautiful woman and her loving family. I hope my family and friends will welcome them into our lives and pray for them in their time of sorrow.

Love to My Donor Family,
Debbie

MILLION DOLLAR GIRLS

Tippi and me waiting to go in for our heart biopsy yesterday at the heart transplant center. Tippi received her heart transplant on 8-28-08. I met Tippi at my first heart transplant support group on 8-12-08. That was the day she was admitted to the hospital to wait for her heart. I knew the first moment we met that we would be friends for life. Not a moment in my day goes by where we don't text, talk on the phone or the computer. She is a sister to me! We have lots to do yet in our lives and I want to share moments with her. She has a beautiful family that supports her - husband Scott, son Rob and daughter Bri along with Mom, Dad and sister Lisa.

Today is Wednesday (day after biopsy) and we both are waiting for the phone call from the doctor about our heart biopsy results. I will post the results as soon as I get my call. All lab work looked fine to me when I checked it last night but still need to talk to the doctors. Look for my special posting tonight also. Merry Christmas!

love,
Debbie

BIOPSY RESULTS

What a Christmas this will be! Just received the call from the nurse at the heart transplant center regarding my heart biopsy results. I got an NER - no evidence of rejection!! That is GREAT!! The best result was no evidence of Amyloidosis in my new shared heart. I am so happy because I want to protect my new heart. I get to decrease my presidone to 5mg per day but that won't make too much of a difference since I took 40mg of Decadron today. Oh well what ever it takes to put the disease to rest so I can live a healthy life.

I have a very special post after this one. It means so much to me because I believe my angel, Jazmin is watching over me. She won't let anything happen and that's the reason why I am doing so well! Her family did say she was very loving and caring. I believe them! May you have a blessed Christmas and please say an extra prayer for my donor family.

Love, Debbie

It's late and I should be fast asleep but went to bed too early so now I'm up. I laid in bed thinking I should go back to sleep and then decided to get up and write this posting.

I spent the weekend enjoying new traditions and spending time with my boys. Saturday didn't start out very well. Saturday was my day to crash from the drug Decadron. They say on the third or fourth day is when it hits you and side effects can be different. That is true. Some days I'm fine and others I'm not. Well Saturday was about the worse! I felt extremely fatigue and out of it. We were planning to go to San Jose to spend Saturday with Erin's family celebrating Christmas. I knew how important it was to Grandma Ruby to see me, so I decided to go.

We had a few stops to make before - Hockey Xsport in Oakland. Maxwell needed two new hockey sticks and blades. I haven't been there for years when the boys were little and both in hockey together. It brought back lots of memories driving them everywhere to pick up hockey gear. I know at the time it was a pain but I would give anything to have those days back again!

We arrived at Grandma Ruby's house and everyone was there. Uncle Bob, Aunt Barb, Andrea, Michael, Martie, Jeff and Grandma Ruby. Grandma Ruby will be 91 years old in January and is so full of life. I watched her enjoying every moment in time spent with her family that day. We had a wonderful dinner prepared by Aunt Barb and Jeff and during dinner Grandma Ruby surprised all of us. She had written a paper about her life and wanted her family to know everything about her. She read a three or four page story of her life and as she read the story I found myself thinking she is a remarkable person. At 91 years old she wanted her family to know the accomplishments she achieved in her life such as owning her own business in the 1960s called "Martha Lee Designs" in which she employed 30 employees making small doll clothes for the then famous "Barbie" dolls. She went on to received several degrees at San Jose State University before retiring. She and her husband after retirement enjoyed traveling every where including Europe and the far east. She was so proud to share this moment in time with her family and I was happy to be there.

After dinner Mark, Markie and Maxwell left for the Sharks game. Grandma Ruby loves ice hockey and especially the Sharks. She knows everything about the team and the players. Grandma Ruby spends lots of time on her computer looking at the team stats and standings. She emails Markie all the time about current Shark events and he enjoys talking to her about the team. Her favorite player is Johnathan Chechoo #14. Grandma Ruby loves her Sharks!

This was my first time at Grandma Ruby's house for Christmas. I was so lucky to be included in their family tradition of gift giving and enjoying each other's company. Uncle Bob took the role of Santa wearing a special Santa hat that I assumed he wore each year. Each gift was given out in a precise order and was opened by the receiver before the next one was given out. Uncle Bob made sure that the person had plenty of time to open and thank whoever gave the gift to them. It was not a rushed event! Unlike, my childhood memories of Christmas gift giving where the hour spent was so rushed no one could remember who gave what! This was different. We spent time talking and enjoying the moment with each other. I kept looking at Grandma Ruby and thinking how wonderful it was to have her there sharing this moment. I told Martie it was a special time for me and it took my breath away. I'm so happy I made the trip even though I wasn't feeling well. I slowly became tired and fell asleep as they finished opening their gifts. Jeff was so kind to take Erin and I back to the hotel and you guess it I feel fast asleep.

Sunday, I spent the whole day home just relaxing and really doing nothing at all. Today is Monday and Mark and I will leave for San Jose around 2:00PM. We are staying at a hotel and I have my routine heart biopsy on Tuesday at Kaiser Heart Transplant Center at seven in the morning. Its been a month since the last heart biopsy and I'm really nervous. Tippi feels the same. I know it will be fine but its the unknown and the wait for results that always makes me crazy. This is something I will have for the rest of my life. I will have heart biopsy every month for the first year and then I believe it drops to one every three months and then one every six months. This next one will included the congo red test for Amyloidosis in which they will take a few extra pieces of the heart to test for Amyloidosis. My last test was negative and I hope this one will be too!

Today before I leave Mom and I will go grocery shopping for Christmas dinner. Maxwell asked for my homemade lasagna on Christmas Eve with Italian sausage. I have enjoyed preparing all of his favorite meals. The other night it was great smelling hot brownies cooking in the oven. It brought back memories of waking up at midnight smelling brownies cooking in the oven. Maxwell would cook brownies and eat only the middle of the pan. I'd wake up the next morning to find a pan of brownies with the middle gone. I would give anything for those moments again!

I have a special posting this week I'm working on. It means so much to me and I want it to be right. It definitely takes my breath away and I'm sure it will you!

It's almost two in the morning and I better get some sleep. I will post results on Wednesday of heart biopsy and of course my special Christmas posting.

Enjoy those moments in time that take your breath away!!

love,
Debbie