Monday, September 28, 2009

What a Weekend!!!!

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

Thursday, September 24, 2009

Remembering


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

Wednesday, September 16, 2009

Stanford Appointment

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!

Monday, September 14, 2009

Posting of Comments

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

Sunday, September 13, 2009

New Picture of My New Grand Child

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

Monday, September 7, 2009

Had a Wonderful Weekend

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