Wednesday, February 25, 2009

Biopsy Results and Stem Cell Transplant

Monday on our way to Stanford, I got a call from Stanford Bone Marrow Transplant Team saying Doctor Sally Aeria had to cancel because she had "pink eye". A very contagious eye infection that I do not need to get. So I rescheduled the appointment for Friday, March 6th.

Mark and I then went to the Fairmont Hotel in San Jose to spend the night before biopsy the next day. We had a wonderful lunch and dinner in the hotel and I felt so relaxed. Stress is so high for me the night before biopsy. I start to think about rejection and especially this time because I was sick. So I got up early Tuesday and we went to biopsy by 7:00AM. I was second in line, Tippi was first. She took a little longer because they did a right heart cath and biopsy. I finally got in and it seem to go ok until I went to the clinic and all of a sudden my juggler view opened up and started to bleed. The juggler vein is what they use to do the biopsy. So it took over an hour before it stop. Dr. Dana finally came in and was going to stitch it up but decided to use a form of seaweed to stop the bleeding. It worked! I was so afraid to take the bandage off this morning in the shower. But it was ok. Dr. Dana thinks they might have hit a blood vessel and that is what started to bleed. My biggest fear has always been to wake up in the middle of the night with my juggler vein bleeding and I bleed to death. WOW that was scary!

The GREAT NEWS is that my biopsy results were NER - NO EVIDENCE of REJECTION! I'm so happy. My beautiful shared heart is so perfect. Evelyn, Jazmin's Mom has told me just how strong Jazmin was. I'm sure my angel is doing whatever it takes to protect me and my shared heart. I was so afraid of rejection because of being so sick this month. I am so blessed!
My labs were good except cholesterol came back high and they increase my dosage of Privcol. Next month Dr. Dana will do biopsy for Amyloid in my shared heart. Please say prayers that there is no Amyloid in my shared heart.

After biopsy, we made the trip to Stanford to see Dr. Schrier Amyloidosis specialist. I was afraid he would just say to schedule the stem cell transplant ASAP because my numbers jumped up so high. He say he is not concerned with the numbers but only one number 0 ZERO. He said these numbers go up and down and are not consistent until the factory is stop. Then you will see the numbers going consistently down but only worry about zero. Now how do we get to zero. Chemo treatments and stem cell transplant. Stem cell transplant does not guarantee that I will get to zero. After stem cell transplant I will still have to do chemo, so why rush now? He agreed and we said we would wait until April or May to make the decision to schedule the stem cell transplant. That means I will be on Decadron and Velcade for almost six months. If it has not changed by then or most importantly my new shared heart has evidence of Amyloid, that's it I will do the stem cell immediately. So for now please pray that the chemo treatments will work and we can shut down the factory and give me some time.

I realize how blessed and yes LUCKY I am. My beautiful shared heart came so quickly and I was able to recover and get a second chance at life. I thank my donor Mom, Evelyn for making the ultimate decision to donate her daughter's heart, so I had a second chance at life. I am so blessed to have her in my life.

So for the next few months I plan to go out and do the things I have put off. First, my Italian speaking lessons have been put on the back burner. No more. I have a deep passion to learn to speak and I want to fulfil that dream. If I have to find a tutor I will, but it's something I passionately want to do. I also have places to go and people to see (sounds funny, but true). I want to go to Yosemite, Carmel and Monterey, Tahoe and when the weather is nice I want to spend at least a week at my trailer in Kelseyville. Just relaxing, reading and recovering. So now that I know I have to at least May or June for the stem cell transplant I will be planning my trips. First one I have already mentioned is to the Montage at Beverly Hills. I will be going the weekend of March 20th. Dr. Dana said as long as my heart biopsy on March 17th goes good, I can go that weekend. That will be so much fun. Kathy Conley and her husband will be coming up to have dinner at the hotel restaurant Muse on Saturday night. I haven't seen Kathy since December and I miss her so much. She calls me every morning on her way to work and we get to talk. She is such a support for me since she is a breast cancer survivor. I can really talk over things with her and she helps me understand.

Well I'm sure you noticed my rambling and are wondering what in the heck is she talking about. I took Decadron today and one of the side effects is I'm wired tonight. Just got off the phone talking to Gary and Debbie and all I did was talk, talk and talk. I don't even know if they got a word in. Sorry Gary and Debbie! I will try and take my sleeping pill and hopefully I will sleep but normally it keeps me up all night. So we will see what happens tonight.

It is worth mentioning one more time. Last March I was looking forward to a beautiful cruise to the Spanish Isles in June. That month I was diagnosed with restrictive cardio myopathy. My cardiologist said I would be scheduled for further tests to rule out Amyloidosis. I went on my cruise in June and when I returned in July I was diagnosed with congested heart failure due to Amyloidosis. My life depended on receiving a heart transplant. Just three shorts months and my life changed! Can this happen to YOU! Think about what you do and say each day because you never know how much time you have with your love ones. Life is short and I realize my is. I plan to make the most and best of it! How about you!

Love,
Debbie

Saturday, February 21, 2009

Stem Cell Transplant is in the Future

Stem Cell Transplant is what is in the future! I met with Dr. Akthar on Thursday and he said I have been approved for a stem cell transplant. So when? He was not happy about my Lambha light chain count going up from 153 to 311. That is not what we had hoped. It wasn't because I took off for two weeks (off Decadron and Velcade). My disease is just progressing and we need to stop the factory before it attacks my new shared heart or my numbers go up too high.

Monday, February 23rd I will meet with Stanford Bone Marrow Transplant Team to discuss and consent to the transplant. I will first meet with the social worker to discuss the financial and consent to the transplant. Then at 2:30PM I have an appointment with Dr. Sally Ariera. She heads up the stem cell transplant team and we will discuss the stem cell transplant. It should be a long day. I have biopsy next day at Kaiser. I'm disappointed because I have to fast before I go to the biopsy. I love my breakfast in the morning. Mark and I order breakfast in our room and its so good. I have to wait until after lab work before I can eat or take my medicines. I think we will stay in the room for dinner on Monday night. The Sharks play and the Bachelor is on. It's the special "The Girls Tell All" night on the Bachelor. Should be interesting!

Today I stay in all day and rested. My neck and shoulders are really sore to touch from the chemo treatment yesterday. I don't feel very strong today. I need to rest as much as possible before my biopsy on Tuesday. I start to get really anxious before biopsy day. It's so stressful waiting for test results whether you have a rejection or not. This one is going to be even more stressful because I have been sick these past few weeks. Hopefully, I'll have a good biopsy.

I talked to Evelyn, Jazmin's Mom today and I sure miss her and the girls. I can't wait to meet Jessika too. Little Angelina has an ear infection (her first one). Poor little one, those hurt so bad. As soon as the girls are well, I hope Evelyn will come to visit again. I miss them all!

Tomorrow is Sunday and the weather is suppose to be rainy. Scott and Linda asked if we would come to their house for dinner. I'm going to bring a leg of lamb and cook it at their house. The Oscars are on tomorrow night. I love watching the stars on the red carpet in their beautiful dresses.

I'm going to ask permission from Dr. Dana if I can travel to Beverly Hills on March 20th. I have a two free night stay at the Montage in Beverly Hills. I would love to go and stay for the weekend. I really need it! Even if I feel bad it will be wonderful staying in a beautiful hotel. I would love to get a massage! The hotel is located next to Rodeo Drive and it will be fun to window shop. I love to people watch in Beverly Hills. I miss going to Beverly Hills and staying at the Peninsula Hotel. I always felt like I was on vacation. It was so peaceful! I had the most beautiful room overlooking the garden area. The room had french doors that I could open up and let the fresh air in. The gardens were beautiful. I had a beautiful bathroom with a big tub. I would take long baths. When does anyone have time at home to do that? I enjoyed meeting my clients for beautiful dinners at nice restaurants. We would see so many movie and TV stars at the restaurants. It was fun!

Dr. Kevin Anderson will begin his stem cell transplant this week. Please pray for him. He has always been my support and will begin this journey first. I will follow his progress and most likely when he has completed his stem cell transplant it will be my turn. He is such a brave soul!
You are in my prayers, Kevin.

Moments in time are what life is all about. Go out and make those moments mean something!
Love, laugh and live!

Love,
Debbie

Thursday, February 19, 2009

What's in the Future for Me

Yes its 2:30Am and I'm still up. Started chemo drug Decadron yesterday and this is what it does. I'm wired and having some leg pains that kept me up. Just took Tylenol hoping that will help with the pain so I can sleep. No luck!

Today I have an appointment with my Santa Rosa oncologist, Dr. Akthar at 10:00Am. Mom and Debbie will be coming. We got bad news yesterday. My lambha light chain count went up from 155 to 311. That is a big jump. I emailed Dr. Dana, heart doctor. She is concerned next week with the biopsy and thinking maybe I will have a heart rejection. Not because of the light chains but the pneumonia I had two weeks ago. We will see. They will treat the rejection with Presdiosone 100mg and possibly IV infusions too. She also stressed I needed to plan for the stem cell transplant due to the numbers not being stable. I meet on Monday with the Stanford Bone Marrow Transplant team and I'm sure they will discuss dates. I want to wait until Dr. Kevin is completed with his stem cell transplant. He will begin harvesting stem cells next week and his stem cell transplant is scheduled for March 14th. So hopefully I can wait until April or May for mine. In the meantime, I will continue with the chemo treatments of Decadron and Valcade. I had a two week break from them and hopefully that didn't cause the increase but I will discuss with Dr. Akthar today and Dr. Schrier Stanford on Tuesday. It is what it is and there's nothing I can do but considered moving on with the stem cell transplant. Even that doesn't have any guarantees. I could still not reach complete response and have to consider another stem cell transplant or stay on chemo. The drug Decadron is very bad for me. I can't stay on it for my whole life. It was described to me as "it burns your bones". So I don't want to be face with hip replacements, bone fractures etc. So hopefully something will work so I can get off this drug soon. Honestly what scares me is being sick, bleeding from everywhere, nausea, hair loss, pain etc. I know it is only for a few weeks but it is nasty! I feel so good now and think why put myself though it but realize I have to do something to put this disease into complete response. There is no cure but only stop the factory from making Amyloid. Friday I will do chemo Velcade and hopefully next week the numbers will come down again or stay the same.
Please pray for me. I really need your prayers now!

Now more that any time I want to go out and do the things I haven't seen or done. I plan to go to Los Angeles next month to use my two nights free at the Montage in Beverly Hills. Gary and Debbie will come too. Gary will drive since I can't fly yet. It will be fun and relaxing! I then want to plan a trip to Carmel and Monterey in April. I haven't been there for years.

Update on Maxwell too. He has been asked by the Tampa Bay Lighting, an NHL hockey team in Florida to attend an NHL Scounting camp in May in Boston. Also, a scounting team is interviewing him on Tuesday in Innisfil. Maxwell is #3 in total points for his league and #1 for total assits. He is doing so great with hockey. Most of the kids in the league are at least two years older than Maxwell. We are so very proud of him. I'm kinda sad that he won't be coming home in April but will have to wait until after the camp. This is ok because its what we have been working so hard for. I mean Maxwell has worked so hard. He is maintaining a 3.5 grade point average in school and will graduate this June. Keep up the good work, Max. Love you.

Don't wait to make those memories that take your breath away. These are the years to do it. You don't know what life brings you each day. Make it worthwhile.

Love,
Debbie

Tuesday, February 17, 2009

Back On Chemo This Week

It was a nice two week break from Decadron and Velcade. To be honest, I didn't really feel that different. I was sick the first week and really felt bad. This last week I was feeling better but I thought maybe something magical would happen like I'd lose 20 pounds and my face wouldn't be so puffy. No chance. There are worst things out there that many people have to deal with each day. I feel blessed that my life is where it is today.

Saturday was Valentine's Day and Mark and me along with Jane and Steve Bjork (neighbors behind us) went to the Kenwood Grill for dinner. We had a fabulous dinner! Jane and Steve really enjoyed it. It was their first time to the Kenwood Grill. I was so full! I love going to Max's restaurant. Everyone is so nice!

As the title to this post says, "Back on Chemo This Week". I start Decadron tomorrow and I guess I will be up all night tomorrow. I have enjoyed sleeping in till 7 or 7:30AM. On Friday I will take Velcade. I have not received my latest Lambha and Kappa light chain count but I'm praying it has come down again. I will even accept little increments as long as it goes down. I was at 155 on 1-29-09. Remember normal is 5-26. I have a long way to go but each decrease is positive. I see Dr. Akthar, oncologist here in Santa Rosa, who will go over my numbers and talk about plans to continue with the chemo or proceed with stem cell transplant in the future. I have a meeting on Monday, Feb. 23rd with Stanford Stem Cell Transplant team to get the information regarding the stem cell transplant. It is an all day meeting at Stanford. Then the next day on the 24th its monthly biopsy, labs, clinic and chest x rays. That afternoon I will be back at Stanford to meet with Dr. Schrier, oncologist Stanford, regarding the Amyloidosis. It will be a business two days.

I keep telling my dearest friend Kathy Conley, who is a breast cancer survivor, when will I wake up in the morning and not think about being sick. I can't wait for the day I don't have to talk about Amyloidosis (although it will be with me the rest of my life because there is no cure). I pray for that day!

I'm watching my Sharks play the Edmonton Oilers and all they are doing is fighting. We are leading so far, 3-2 in the second period. I wish I could go to a game soon. I would have to wear my mask and that won't be very comfortable.

Maxwell is doing awesome in Canada. So far he is second in the league for total points and first for total assists. Most of the kids in his league are 18-20. Maxwell will be 18 on March 15th. I watched a video that the league puts on and they interviewed Maxwell. He was so professional and looking so good in his sweater and tie. I know he will hate me for that but he's my little man.
I miss him so much. He will be driving back from Canada in April after the play offs and stay until August or September. I can't wait!!!

Have a wonderful week. Have you made memories that take your breath away?

Love,
Debbie

Friday, February 13, 2009

A Special Thank You

Olivia, Sonia's daughter

Sonia and Me
I want to say a special thank you to Sonia. Sonia was one of Jazmin's closest friends. Jazmin was also engaged to Sonia's brother, Marco. Sonia was there with Jazmin the night she passed away. She is truly a close friend.
As everyone knows, it's sometimes so stressful and emotional thinking about your donor. Who was she or he? How old? Where did they live? All these questions run through your mind. Let's not forget the thoughts of the family and what they are going through. My sister, the little detective that she is, searched on the Internet and found a young 18 year old girl who passed away around the same time I received my heart in Vacaville. The night of my transplant one of the heart doctors told us the heart was coming from Vacaville. So away went Kathy and she found Jazmin Iris Mitchell. Kathy found the obituary and thought well maybe she has a myspace. Sure enough every teenager has one and Jazmin did. Kathy picked up on Sonia's name and wrote to her on Sonia's my space. Sonia responded to Kathy and eventually Sonia and I were emailing eachother. She kept me updated on Evelyn and the girls on how they were doing. I respected Evelyn's wishes that she needed time to get through the sorrow and will contact me when she was ready. Well as all of you know I met Evelyn and her girls two weeks ago. This would not have happen if it were not for Sonia and my sister Kathy. I am so grateful to Sonia. This is something I have wanted since the day my shared heart starting beating inside me. I wanted to meet Jazmin's family and friends. It has been a wonderful experience.
Sonia, thank you is such a small word to use for what you have done for me. I know our Angel in heaven feels the same.
Also, big hugs to Olivia.
I hope meeting me was a moment that took your breath away. I know it was for me because you hugged me and put your hand on my shared heart to feel it beating inside. I will never forget that moment!
Love,
Debbie



Happy Valentine's Day

Wishing everyone a Happy Valentine's Day! Go out and make memories and enjoy the moment!

This week has been a week to rest and recover from the pneumonia. On Tuesday, I picked up Tippi in Vallejo to go to our heart transplant support group meeting. Tippi has not been there for two months and really wanted to go. We had a great time. She got to see old friends and talk about her recovery. We got to see Mary, who is awaiting a heart transplant. We pray for her each day that a heart will come soon. I always have mixed feelings when I make a statement like that. I would say the same thing when I was waiting. I knew somewhere out there, someone would have to die to give me life. It was hard waiting and knowing that was what would have to happen in order for me to live. Then there is the other side we don't think about and that is our donor family. I have been so lucky to have met my donor family. Evelyn, Jazmin's Mom, is so wonderful to me. She is a loving and caring person. Talk about a strong person. That would describe Evelyn. She has gone through the unthinkable, losing two beautiful daughters within 2 years. She tells me Jazmin would have wanted to be a donor and it gives her peace knowing Jazmin's heart is beating inside me. We have connected so quickly and can't imagine not having her and the girls in my life now. I pray each day that God gives her strenght.

Mark and I will be going to Max's for dinner on Valentine's Day. I love going to the Kenwood Grill. Many friends who treat us like family. Max always gives me a table in the corner and prepares meals that won't hurt my heart. It will be a very nice evening!

Matthew came to visit this weekend and today he is taking me out to do errands. I have to go to the DMV to renew my disable plate and pay the registeration on my car. Then we will go to lunch together. I'm just happy to see him home.

Maxwell will finish his hockey season in April. He will come home then until September. WOW that is going to be so wonderful having him home. I know it will be short because he will go back to Canada somewhere to play hockey. Mark and I are so proud of him.

Have a wonderful weekend and stay dry. I guess we finally are getting the rain we desparately need. Go out and make memories that take your breath away!

Love,
Debbie

Sunday, February 8, 2009

Feeling Better

This week was fun! My first week off all chemo drugs and I get sick. I was looking forward to feeling better off the drugs and doing more. Well that's life sometimes it goes sideways.

I'm feeling better but still have a cough. Can't tell you how much that hurts my incision. My chest is so sore from the coughing. I have rested all weekend and hopefully I can do more this week.

I really want to go to my heart transplant support group meeting on Tuesday. I want to go to Vallejo and pick up Tippi and take her. She hasn't been able to go in two months and I want her there. I thought it would be fun to go together and then we can visit Mary Ann (Mary Ann is in the hospital waiting for a heart transplant) and then go to lunch. I want to make it a day with Tippi. These are moments that mean so much to me!

On Friday I will do my lab work for Stanford's appointment on the 24th to determine my latest lambha light chain count. Dr. Schrier wants this count before I meet him on the 24th. I have scheduled the appointment with the bone marrow transplant team for February 23rd. Mark and I will stay in San Jose that night because I have my heart biopsy on the 24th. I'm looking forward to the meeting with the bone marrow transplant team to clear up questions and concerns I have. I'm leaning towards April or May to have my stem cell transplant. I will be in the hospital for 30 days and living in an apartment next to Stanford for another 30 days (Mom and I on the road again). I think if I do it by the end of April, I will be recovered by end of June. My brother Joey is getting married on June 27th and I would love to be there. Also, summer is my favorite time of the year and I want to be well!!! So that's my thoughts and I will know more after my meeting with the team on the 24th. I wished I didn't have to make these decisions, but sometimes life goes sideways!

I want everyone to know Jazmin's Mom is the most loving and caring person I have ever met. She has shown me so much love! My heart is so happy! It made me so happy yesterday when my cell phone rang and on the other end a little voice said "is this Debbie?". It was Ashanti. We talked and it made me smile. I'm so happy to have them in my life. I want to make moments with them that take our breath away. I don't think anything can compare to the moment I first got to hug Evelyn. I will never forget that moment and I don't think she will either.

Have a wonderful Sunday and go out and make memories that take your breath away!

Love,
Debbie

Thursday, February 5, 2009

I Let My Guard Down

I let my guard down and now I'm sick. Yesterday I went to Kaiser for chest xrays and blood tests. I have right lung pneaumoia. For the last four months I have been so good asking friends and family to wash their hands and jell up before coming into the house. I have signs outside my front door, back door and slider telling people, "if you are sick, do not enter". Well someone was sick and now I'm sick, my sister Mary Ann is sick and Jazmin's Mom and Sisters are sick.

My immune system is very low right now to avoid heart rejection. So when I get a cold it becomes pneumonia. I can't afford to take a risk like that again and I hope this won't put me into a rejection.

I'm asking again that whoever comes into my house or near me, MUST wash their hands and jell up. Most importantly, if you or your child is sick, I cannot be around you. Please have consideration for my health. I have gone through alot including chemo and won't take these risks anymore.

So for the next few days, I'm on a very strong antibiotic and hopefully this will clear my lung. I'm thankful I have my two week break from chemo or I would be forced to miss my treatment. I plan to rest at home.

Remember please follow the rules I have posted at my doors!

Love,
Debbie

Tuesday, February 3, 2009

Precious Moments


Ashanti & Angelina



Jazmin's Mom Evelyn and Me


These are precious moments! On Saturday, Jazmin's Mom Evelyn drove from Vacaville to meet me with her youngest daughters, Ashanti and Angelina. I can't begin to explain the joy and happiness I felt meeting her. It is something I have dreamed about for months. She is a very loving and caring person. She made me feel welcomed into her life and assured me that she made the right decision for Jazmin. It was very emotional for both of us. I gave her the biggest hug because I wanted her to feel her daughter's heart beating inside me. We watched the CD from Jazmin's Memorial Service and it was so beautiful. Jazmin was a beautiful girl with so much to give in her life. I realize now that her greatest gift was my shared heart beating inside me. It's been hard these past months thinking about her and realizing she lost her life to give me life. I have a child the same age and how would I do it. Evelyn is such a strong person to make the decision she did. Jazmin saved so many lives that night. She is truly an "angel".


Evelyn and her girls, Jessika, Ashanti and Angelina will always be family to us. It was truly beautiful to see my family and friends on Sunday tell her how much they appreciated her gift and how much she means to all of us.
I can't wait to make moments in time that take my breath away with her and the girls. I have to say this weekend, giving her a big hug, was definitely a moment that took my breath away!
love,
Debbie


Doctor's Appointment Today

Mom and I left this morning at 6:00AM for my doctor's appointment with Dr. Dana at 9:00AM. She was concerned last week with the headache I had and wanted to do a echo cardiogram to rule out rejection. She said if my ejection fraction (think that is what it is called) was low, then she would have me do a biopsy today.

She did the echo and my shared heart ejection fraction was 65. Perfect she said! I have a bad cold and cough and she prescribed cough syrup with codeine, so I can sleep. Other than that she said everything looks good and I don't have to come back until the 24th for heart biopsy.

I was glad to be able to see the doctor today to be sure my shared heart is ok. As Dr. Dana said it is PERFECT and it is!

love,

Debbie

Monday, February 2, 2009

Hi Everyone

I wanted to post something to let everyone know I'm doing fine but not feeling well today. I think I am coming down with a little cold. I had a very busy weekend and I have some wonderful things to tell everyone. Today I just wasn't feeling well to sit down and write about my experiences this weekend. I promise, after my doctor appointment in Santa Clara tomorrow, and I'm feeling better, I will write about the most precious moment in time I experienced this weekend.

Love,

Debbie