Wednesday, January 28, 2009

Special Moments

Today I scheduled a facial with Jeanie, Facially Yours. Before transplant I would have one done monthly. They are wonderful! She is a dear friend that I have known for over 25 years. Sadly, Jeanie's wonderful husband Tom passed away last February after a very brave 20 years fighting Leukemia. He was a beautiful person and is missed every day. Most importantly today I got to talk to Jeanie about alot of things that she and Tom went through during his long battle with the disease. Jeanie shared something special with me and that is to live each day as though it is our last. She gave me this saying and I want to share it with you:


Dream as though you'll live forever,
live as though you'll die tomorrow!
She said Tom and her would read this to each other during his fight. I have to say they live by that saying. I remember the trips they took with their two beautiful daughters. They made moments that took their breath away!!! Thanks, Jeanie.
I came home and looked at my emails and saw an email from Rachel, my brother Joey's fiance. First I had to clear something up, I hate the word "in-law". I told you are marrying my brother you are my sister! So in the email Rachel talked about how important my blog has been to her and my brother. How they look at things differently now than before. That is exactly what I wanted to accomplished when I started this blog. She also told me her Mom in Arizona reads my blog and has encouraged her kids to view it. That makes me sooooo happy!!!
I thought from the very first day what I wanted to say each time I opened the blog to write. I know sometimes (like tonight because I took my Decadron and I'm wired and can't sleep) I tend to ramble on but I'm honest about my feelings. So I want to thank Jeanie and Rachel for these moments in time.
Go out and make moments in time that take your breath away!!! This weekend I plan to make lots. Sonia is coming to meet me and I can't wait to give her a BIG HUG - my shared heart (her sister Jazmin's heart) hugging her. What a moment that will be!
Love,
Debbie

An Angel in Heaven

Jazmin
You didn't add days to my life, but you added life to my days!
I will always be grateful!
Love,
Debbie

Monday, January 26, 2009

Donate for the Cure

During one of my late nights, I started looking on the Internet for anyone who is suffering from this terrible disease. I came across a young man, 17 years old, name Stephen Wright. His mom Chris, has primary Amyloidosis. I read her blog and although I have not had a stem cell transplant (yet) I could see the suffering from this disease. Chris has congested heart failure but the stem cell transplant has saved her life. She is in partial response and will decide soon on the next step to put this disease in complete response. As for Chris's heart, I don't have all the information on what she plans to do in the future. I only ask two things from my family and friends. That is pray for Chris and her family and please look at this web site
www.chrisjourney.com. This is Stephen's web site to his mom and the journey he is about to take.


Stephen is going to ride his bike from Florida to Massachusetts in support of his Mom and research for Amyloidosis. He is accepting donations or sponsors towards the Amyloidosis Foundation. Please look up the site and donate! We need more research to find a cure for this horrible disease. I've never asked for anything like this but I believe this young man has the will and determination to complete his journey and raise $10,000.00 for research. He is also doing this for his Mom but for everyone who suffers from this disease, like me!


Post a comment on his blog and give him support and your prayers to complete his journey safety! God Bless Him!


Love,
Debbie

Saturday, January 24, 2009

Amyloidosis Support Group Meeting

Mark and I just got back from the Amyloidosis Support Group Meeting held at Stanford today. It was a great meeting and I enjoyed seeing and listening to everyone's stories.


There were 3 doctors present who specialize in Amyloidosis. Dr. Belinda Ng, cartologist who studied at Boston University Amyloidosis Center. She was very knowledgeable about the disease and of course the heart and how it pertains to Amyloidosis. I asked a lot of questions.


During the lunch break, Mark and I approached the Doctor from Stanford, Dr. Wittles. Dr. Wittles and his wife both work at Stanford and each are in the field of Amyloidosis and Multiple Myaloma. They had a lot to say. I asked many questions such as, will the amyloid attack my other organs. He said usually not. That there is a certain cell in my plasma that will go back to the original organ (heart) and the amyloid will attach again. So Stanford and Kaiser will not wait for the amyloid to attack my new shared heart. He felt my numbers were still too high but used caution. He is not a firm believer of stem cell transplant. He believes in the traditional chemo treatments first then consider stem cell transplant. He felt that if the numbers don't go down in a reasonable time to near normal (5-26) then a stem cell transplant would be the best option next. I'm hoping and praying that velcade and decadron will bring these numbers down to avoid a stem cell transplant. But as I have said before, if the numbers do not come down or if amyloid starts depositing in my new shared heart, I will proceed with a stem cell transplant. That is my only chance to put this disease into complete response.


I have mentioned in my past blog, Dr. Kevin Anderson. Dr. Kevin had a heart transplant 6 weeks before me and also has AL Primary Amyloidosis. He was the first heart transplant performed at Stanford with Amyloidosis Primary and I was the second. Stanford had not done a heart transplant on an amyloidosis patient in twenty years, I believe. I found out yesterday, that Dr. Kevin will be the first heart transplant patient to have a stem cell transplant and I will be the second. Dr. Kevin is my big brother. He goes first and whatever works on him, they will try on me. So I guess we are making history. Stanford wants to become the West Coast Treatment Center for Amyloidosis. As everyone knows, there are two East Coast Centers which are Mayo Clinic and Boston University. So anyone from the West Coast would have to travel and live on the East coast for treatment. That can be very costly and emotionally upsetting to a patient who has to be away from family for long periods of time. So we are very lucky to have such a prestigious hospital here in the Bay Area.


The doctors who attended yesterday cleared up alot of unanswered questions in my mind and I appreciated your support to our group. It was reassuring to see three doctors take time out of their busy weekend schedules to attend our support group meeting.


I made a big pot of spaghetti sauce today and look forward to having spaghetti and raviolis tonight for dinner. YUMMM!!! There I go again about food! Can't help it, it's just the drugs!!!


Hope everyone had a wonderful weekend. I'm looking forward to next weekend when Sonia, Jazmin's friend will come to meet me for the first time. Can you imagine what a moment in time that will be. Jazmin's Mom wants to come next month sometime and I can't wait to give her a big HUG and welcome her into our family. I know it will be very emotional for her and for me too, but Jazmin is here to help us through it. Making memories that take our breath away is what life is all about. I plan to make lots more!!!!

Love,
Debbie

Friday, January 23, 2009

Good News!

Good News! Just finished my third treatment of Velcade and the nurse Cheryl reviewed my lab results and told me that my Lamba count went down from 277 to 163 in just 10 days and one treatment of Velcade. That is awesome! Now I do know these numbers can go crazy sometimes but that is a decrease of over 100. My kappa light chain count is now at 2, which is below range. I will repeat these tests on the 7th of February before I meet with Dr. Schrier at Stanford. Dr. Dana Weisshaar, my heart transplant doctor, called to say that Dr. Schrier sent her a letter outlining the future treatment plan for me. He did say in the letter that I will follow the Decadron and Velcade treatment plan and if my Lamba numbers don't show significant decrease then a stem cell transplant is needed. He wants me to meet with the stem cell transplant team to go through the introduction to save time later. So Dr. Dana is setting up the appointment for sometime next month. I'm so happy to see these numbers go down! It's what I have been praying for. I have to be patient and keep saying my prayers!


The treatment went well today but I'm already feeling the soreness and swelling in my neck and shoulders. I think its because this is my third dose and the drug is building up in my body. Nurse Cheryl also gave me some nausea pills because she said that can happen too. I'm hoping I feel ok tomorrow for my Amyloidosis support group meeting at Stanford. It's a pretty big meeting with several specialists from Stanford who know alot about Amyloidosis. I will have to wait to see how I feel tomorrow when I get up. Last Saturday wasn't very good but each week is different. I'm looking forward to seeing Dr. Kevin and Barbie at the meeting and my new friends I have met in the support group.


Tonight will be a night to relax. I made a pot roast in my slow cooker and will make mash potatoes and a green salad. YUMMM! The weight keeps piling on but there is nothing I can do to stop it until I'm off these drugs. I'm not too concerned about the weight and will continue to do my daily exercises. I will need the extra weight if and when I go through with the stem cell transplant. I will be on massive chemo and the side effects are weight loss, hair loss, nausea, sores and much more I'm told. So having the extra weight will help in my recovery.


Have a wonderful evening! Enjoy this moment in time. I'm enjoying this moment because I know I'm getting healthy and my body is responding to treatment. What a beautiful moment!


love,
Debbie

Wednesday, January 21, 2009

Heart Biopsy Results

First before I get started, I hope everyone enjoyed seeing my beautiful angel, Jazmin. She is my hero! I wish my donor family love and strength each day. They are always on my mind. Sonia will be meeting me for the first time the weekend of the 30th. I'm so happy to finally meet her and give her a big HUG! It will be a very emotional moment and one that will take my breath away. That is what life is all about. Its not how rich you are or the finer things you have, but how many moments take your breath away! I have had many moments like that. To name a few, the day my sons were born, the day Mark and Erin were married, the places I have been so lucky to see, and the ultimate moment in my life happened on September 26, 2008 - the day I was given a second chance at life by this beautiful girl and her family. Grateful is the word!


So, yesterday was my monthly heart biopsy. All went normal and Mark and I spent the night at the Fairmont in San Jose. We had a wonderful dinner the night before in our room because I was not up to going out. We enjoyed breakfast the next day in our room again and then went to the hospital. I got my results this afternoon and my heart biopsy result was a 1R which means slight rejection. The doctors are not concern about 1R rejections. I did have some changes to my medicines. My cyclosporine count was low (158) and they adjusted my Gengraff (immuno suppressant drug) to 125mg AM and 150mgPM to help bring the number up to 200 to 250. So I started that tonight. Also, Stanford felt I should not be taking Presidone (steroid) anymore being that I am on Decadron. Dr. Dana feels I should stay on it but lower my dose from 5mg to 2.5mg. So I will take that dose tomorrow.


Erin came over tonight and brought her friend Amanda. I hope Amanda won't mind if I tell her story. Armada is 26 years old and two years ago had Stage 4 Lumploma cancer. She was on massive chemo that wasn't working. She was dying and her only option was a stem cell transplant. I asked to talk to her. We met last year at my trailer at Clear Lake. She spoke to me about the stem cell transplant but that was way before the heart transplant or even the chemo treatment. So fast forward to today and I'm faced with the decision to have a stem cell transplant. I wanted to hear the good and of course the bad. She didn't sugar coat anything, which I appreciate that. I need to know the truth. She is completely cancer free after two years and looks and feels healthy. Her thoughts are "why feel crummy every day on these drugs or even stronger chemo, when you can have the stem cell transplant and yes feel awful for thirty days but then feel good after. Not to mention the chance of going into remission. Now there again I don't have cancer and there is no cure for Amyloidosis. It will always be in my body. The goal is to stop the production of new Amyloid being produced and attacking my organs. My future will include more chemo or second, third stem cell transplants. So I have decided to get more information and I will be contacting Stanford tomorrow to set up the appointment to meet with the stem cell transplant team to discuss stem cell transplant.


Tomorrow I have lab draws of blood for chemo lab tests before chemo on Friday. Chemo treatment is Friday at 3:00PM. I can now have a flu shot and will get that on Friday. Also, Dr. Dana said I can get my teeth cleaned again and made that appointment. Also, sad to say but the drugs are really effecting my eyes. My vision is so blur. I made an eye appointment for next week to get that checked. I have reading glasses everywhere. I am having trouble writing checks at the store and can't even see the number ringing on my cell phone. So sad how these drugs cause other problems such as blur vision, weight gain, hair growth, cancer, bone problems and much more. But I need them to keep my body from rejecting my beautiful shared heart and I will do whatever it takes to prevent that.


It's 10:30PM and hopefully taking Decadron today I won't be up wired at 2:00AM. If so, I have made a list of things to do. All the cabinets are cleaned so I can't do that but decided to work on my photo albums and my Italian tapes. So I hope for sleep tonight.


Remember enjoy those moments that take your breath away!


love,
Debbie

Sunday, January 18, 2009

To My Donor Family With Love

Jazmin



Two Families,
Each unknown to the other,
Yet bound together
Forever and irrevocably
By a golden chain
Whose links are
Love, unmatched generosity,
And indescribable gratitude.
Today is forever burned
Into the memories of both families.
One will remember with sadness
The tragedy which took their loved one.
The other will remember with joy
The gift which gave their loved one back to them.



AH! That wonderful gift!
The gift of Life!
Praise be to God
For families who can, despite their grief,
Give to others so they might live.
You are my donor family.
I am the recipient of your love one's heart.
How can I ever say "Thank You"?
I pray for you every day
And thank God for you every day.



May God bless you and keep you;
May he comfort you and strengthen you.
This is my prayer for you
My wonderful donor family.
I will always carry you in my heart.

Not Feeling So Hot!!!

How can I complain when there are so many other people out there worse than me suffering from cancer and undergoing terrible chemo treatments. Yes, I did feel terrible yesterday and it kept me down all day. The pain and the tingling in my feet was the worse since being on Decadron and now Velcade. I sat in my recliner most of the day. Thank God for my recliner. It is so comfortable. Gary and Debbie gave us these recliners and they are beautiful. I got a good night sleep which helps alot. I feel ok this morning but of course I'm up early. I never could sleep until 8 or 9 o'clock. Mark will take me grocery shopping today. Today there are two playoff football games. Mark's team the Steelers plays this afternoon at 3:30PM. I think Scott and Linda are coming over. I haven't seen Linda in a few weeks and miss her. I plan to make dinner tonight, since I only had cream of wheat last night. I brought a pork roast at Costco and I will make that tonight. Hopefully, the Steelers will win and go to the Super Bowl or Mr. Douglas will be in a BAD mood! HAHA


Monday night Mark and I are going to San Jose to spend the night before my heart biopsy on Tuesday. I used to stay at a hotel with a kitchen and cook dinner and breakfast the next day, but it is so stressful packing food, cooking and rushing to get to my biopsy the next day. So the last time, we decided to stay at the Fairmont in San Jose. We had a beautiful room on the fourteen floor in the new tower overlooking the city lights. Mark and I had dinner that night at The Grill, a steakhouse. That was the first dinner out for me. They were so nice to me too. I told them I just had a heart transplant and needed a table away from people to avoid infection and they gave us a private table in the corner. We had a wonderful dinner. The next day I ordered breakfast in our room at 6:00AM. What a breakfast! Eggs, chicken apple sausage, potatoes, fruit, OJ, toast and coffee. It was so nice not to have to rush and stress before my biopsy cooking breakfast. I have to have something to eat with all the medicines I take early in the morning. So this week we will stay again at the Fairmont. I'm praying for another NER (No Evidence of Rejection) heart biopsy. I'm a little nervous because of the new drug I'm on, will that cause a rejection. I think about it all the time. This week will be busy with heart biopsy on Tuesday, labs on Thursday and chemo on Friday.


I have a special posting after this to my donor family. I have been communicating with Jazmin's fiance's sister Sonia. She has been wonderful. She has shared so much about Jazmin and it makes me smile when I think about her. Sonia is coming to meet me the weekend of the 30th. I can't wait to give her a BIG HUG! Jazmin's Mom Evelyn has said she will meet me soon but needs more time. I respect her feelings and want to give her time. Tippi shared this special poem with me called "To My Donor Family". I will post it after this posting to my donor family along with a special picture of Jazmin. I want to keep her in everyone's mind and say a special prayer to my donor family.


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


love,

Debbie

Friday, January 16, 2009

Decisions Decisions

Since Tuesday's meeting with Dr. Shrier at Stanford I have been tossing the decision of stem cell transplant in my head. I keep asking the question is this the right thing to do now or wait? I don't have a crystal ball and don't know how effective the chemo treatments will be. I emailed my heart transplant doctor, Dr. Dana Weisshaar at Kaiser regarding my decision and asked her for her opinion. She wrote back to say that she is not an expert on AL Amyloidosis and depends on the expert Dr. Shrier at Stanford. Dr. Dana feels that there must be a good reason why Dr. Shrier recommended stem cell transplant in February or March and wanted me to be sure I understood his reason. If he agreed to wait and honor my decision to give the chemo treatments a chance, then Dr. Dana is ok with that. Her main goal is to keep my shared heart working and protect it anyway possible. Good news is that there are no amyloid deposits in my new shared heart at this time and we want to keep it that way. Dr. Dana will check the heart every 3 months for amyloid deposits. So at this point, my decision is to complete the first round of Valcade, which will be in 3 weeks, and check lamba light chain number and make a decision. If the number has gone up drastically, then the decision is clear to schedule a stem cell transplant. If the number is lower and we see some progress then I will proceed with a second course of Valcade for 4 weeks and check numbers again. So at this point, it is a wait and see decision.


I slept good last night after being up since 2:00AM and feel rested. I have my chemo infusion appointment at 2:30PM, which won't take too long. Mom is picking me up after to go to Walmart for a few things. I learned how to burn CDs and made her 5 CDs last night. There are so many great songs on them, of course country like Toby Keith, Brooks and Dunn, Kenny Cesney but also some Italian artists, Celine Dion, the Supremes and the Four Seasons. It brings back memories when I listen to the Four Seasons and think about the time I took Mom, Auntie Mary Joan and Erin to see the musical Jersey Boys. We had so much fun! I took them to dinner in Sausalito to Angelino's and then to the Four Seasons where the hotel car gave us a ride to the theatre. We watched and sang (Auntie and Mom were dancing and singing in their seats). It was a wonderful memory I will hold in my heart forever! That is what moments are made of. I want lots more of those moments in time!


Have a wonderful weekend and enjoy every moment in time!


Love,
Debbie

Tuesday, January 13, 2009

Moments Shared at Kaiser and Stanford

I knew today would be busy! It started out at Kaiser Heart Transplant support group meeting. I saw all my heart transplant friends, Ken, John, Matt, Linda, Leo and met new friends. It was a very good support meeting. I met a lady (forgive me I cannot remember her name, but know she will contact me) who was recently listed on the transplant list. Her heart was damaged by a virus. I first met her months ago, before I had my transplant, and could see how scared she was and how she denied having any problems. I was in the same space and could understand her feelings. I was happy to see her and her husband today. She seem prepared to accept the fact she needs a heart transplant. I hope we were able to help our new heart transplant friends move forward with their decision. It was definitely the best decision I made.


After the support meeting it was off to Stanford to meet with Dr. Shrier. I was so happy Gary and Debbie were there. Poor Dr. Wong, we jumped all over him with questions. He was so supported and answered all our questions. I got a lot of information today and want to share it with you. First, I asked about my Lamba light chain number which was 277. The first test I took before the heart transplant was 264 and then after transplant it went down to 206. So I was concerned when the last test result showed an increased to 277. Dr. Wong was concerned too until I told him I did not start Valcade until last Friday and that my blood work was done before first infusion of Valcade. He thought I had been on Valcade for a month and why was the count high. Dr. Wong felt much better knowing I had not started Valcade and felt the number was basically stable. So now time will tell. I will take Valcade with Decadron for 4 weeks and off for 2 weeks. I will be retested in 6 weeks to see what my Lamba count is. He also said that the type of Amyloidosis I have usually will go back to the same organ - my heart. I have been afraid that the disease will attack my other organs such as kidneys or liver. Now how long did it take to damage my old heart, no one knows. It could have been 20 or 30 years. One thing is for sure Kaiser and Stanford will not let anything happen to my beautiful shared heart. That is why they are aggressively treating the disease. I have had two heart biopsies for Amyloidosis and both were negative - thank God. Dr. Shrier came in and talked about the stem cell transplant. He stated according to Mayo Clinic I would be having a stem cell transplant in February or March. Of course, I said, you mean next year and he said no this year. That's when I started to cry. I said, "No". I'm not ready for a stem cell transplant. I want to give Valcade and Decadron a chance and if it doesn't work than I will do it. So for now we wait and see. I feel at least 4 months on Valcade will be a judge on where I'm at with my disease. If my lamba count goes totally crazy, I told him I will do the stem cell transplant sooner. I just got my life back and want time to enjoy moments! He was fine with that. So please say a prayer that the chemo will work!


I'm so thankful to have Kaiser, Mayo Clinic and Stanford treating me. I have the best doctors in the world caring for me. New research is developed every day and who is to say a new treatment for Amyloidosis won't be discovered. I have to have faith! In the meantime, I will do whatever it takes to slow the progression of the disease.

Mark comes home tomorrow. Maxwell played in the All Star Game tonight. Mark said he got one assit in the game and his team lost. Mark enjoyed the time he spend this past week with Maxwell. I feel better knowing Mark was able to see where he plays hockey, his friends, and where he lives. Maxwell loves living in Canada playing hockey and will stay there for next year.
I miss him so much but realize this is his future and he has to go after his dreams!


I need to check my lab results from today. My cycolospine count was too high last week at 284. So the heart transplant doctor lower my gengraff to 125 AM and 125PM. Hopefully, it has come down before next week's heart biopsy.


Have a wonderful evening and enjoy every moment in time! I enjoyed the moment I spent today with my heart transplant friends old and new.


Love,
Debbie

Monday, January 12, 2009

Million Dollar Girls


Tippi


Me

Making Memories That Take Your Breath Away

Million Dollar Girl's Weekend

The weekend was worth a MILLION dollars!!! Tippi and I had so much fun. On Saturday we went to the coast for lunch. Pictures say a thousand words! It was a wonderful drive out to the coast and the weather was terrific! We stayed home that night and just relaxed. I was a little tired from our day and the chemo treatment I had on Friday. We talked all weekend long! I really enjoyed the long talks we had. It is so comforting to have someone to talk to about the heart transplant and what we are going through. Scott picked Tippi up and I missed her when she left.


Doug and Lynn Rackerby came to visit after Tippi left. It was so nice to see both of them. Lynn works in the same department with Dr. Sandy Warren, my cardiologist in Santa Rosa. He is a wonderful man who kept telling me he would get to the bottom of what was causing my heart to fail. He was, along with Dr. Kevin Castello, who diagnosed my disease, Amyloidosis. What I mean is that they knew something was wrong and kept pushing until we knew for sure it was Amyloidosis. Dr. Warren referred me to Dr. Dana Weisshaar in Santa Clara who performed the heart biopsy which showed Amyloid in my heart. Thank god for these doctors!! Lynn has been such a support to me also. There were a few times I didn't understand a lab result or test and she was there to help me understand. Thank you for being there for me, Lynn!


Nana is staying with me until Mark comes home on Wednesday. She is making "Joe Special" tonight for dinner. YUMMMM!!! I'm so lucky to have my Mom here with me!!! I don't know how I would have made it! We are going to watch "The Bachelor" at 8:00PM and hopefully I won't fall asleep before its over. Last week I fell asleep and on Saturday when they did a repeat of the show I fell asleep AGAIN!! So tonight I'm staying up!


Tomorrow will be a busy day! Gary, Debbie, Mom and I are going to support group at Santa Clara Heart Transplant Center. I'm so excited to see all my heart transplant friends. They make me so happy! After the meeting I will be seeing Dr. Shrier at Stanford. Debbie is looking forward to meeting him and asking questions. She has been up to date on my disease since the beginning and I'm counting on her to ask questions that I have been afraid to ask. She writes notes and I can go to her later for the answer to a question. That is so helpful because sometimes I am in denial or just don't want to hear what is being said. That is FEAR! I know one thing and that is I'm feeling great right now and I feel I have my life back again. I can drive and do a few more things each day. The next treatment if the chemo doesn't work will be a stem cell transplant. As I have said before, that is nasty! It involves 30 days in the hospital, massive chemo and radiation. I'm not ready for that yet but if the doctors say my life depends on it then I will do it. I'm hoping Dr. Shrier will give me the 4-6 months we talked about. Until then I will fight this disease with my chemo treatments and it will not get me!!! I'm Italian!!! A fighter!!!


I'll post pictures of Tippi and I at the coast after this posting. Make memories each day that take your breath away. I enjoyed making memories with Tippi and love her as a sister!


love,
Debbie

Saturday, January 10, 2009

First Course of Valcade

Yesterday was my first course of Valcade. Valcade along with Decadron have been successful in treating Amyloidosis. Although there is not a cure for Amyloidosis, these two drugs seem to slow the progression of the disease. As many of you know, I take Decadron on Wednesday 40mg or 10 little green pills, along with the other 27 pills for my shared heart. The Decadron is a nasty drug and causes many side effects. Each week I have experienced a different reaction to the drug. This past week it was, as I wrote in my blog, being wired. I was up at 2:00AM and couldn't go back to sleep, talking 50 miles a hour and sometimes not making much sense. Usually by today, I feeling fatigue and sore, but so far this morning feel pretty good. Slept good which helps alot. So yesterday, my first course of Valcade went well. I arrived at the infusion center in Santa Rosa at 9:00AM. They started an IV for about 15 minutes to flush the vein and then injected the drug into the IV, just like a shot. I met with the Ongologist Pharmacist who gave me alot of information at the two drugs. These two drugs are successful in treating multiple melanoma, also. I have been diagnosed with that form of a blood cancer but it is in the smoldering stage. That means that sometime in my life there is a chance it could surface, but as luck has it, having Amyloidosis and being treated with Decadron and Valcade will put the multiple melanoma into remission, hopefully! The Pharmacist stressed that these two drugs need to work together and need time. One or two courses will not be enough to see changes in the Kappa and Lamba light chain count. So I plan to give it time, as long as my numbers don't go too crazy.


These days all I think about is numbers. Numbers for cycolsporine, number for white blood cell count, number for blood pressure, blood sugar and yes numbers for Kappa and Lamba light chain. On November 14th my Kappa count was 4 and Lamba count was 206. The normal range for Lamba is 5-26. On Thursday I received my latest results which were very disappointing. I have been on Decadron for almost two months and my Lamba light chain went up to 277. We're going in the wrong direction I told the doctor, what's happening. She said these light chains are so crazy and sometimes they go up and sometimes they go way down. Decadron alone does not lower these numbers and possibly the number could have been alot higher. So now we wait and see how the two drugs together will work to lower these numbers. I will do lab work every Thursday, yes to see the numbers of my white blood cell count, kidney function and alot of other things, before they infuse Valcade on Friday. I will take Valcade and Decadron for 4 weeks and then go off for 2 weeks. I will enjoy not taking Decadron for two weeks!!!! Enough of all that serious stuff. I can just tell you, I will beat this and I will fight this. It is not going to get me!!!!

Yesterday I drove to Vallejo and picked up Tippi to spend the weekend with me. We enjoyed a wonderful evening together. Had a nice dinner, honey mustard chicken and a green salad. Talked for hours about her disease, my disease, our donor families and of course our beautiful donor angels. Tippi's donor is Angelina, a beautiful 28 year old Mom with 6 children who accidentally overdosed. Tippi has communicated with her donor Mom and will meet in April at the annual Donor/Recipient get together held by the Northern California Placement Donor Center. Tippi and I then got our PJs on and watched, guess what! SEX IN THE CITY movie! We laughed for hours! Finally went to bed at 11:30PM and sleep great! Today I would like to take a drive for a few hours either to the coast or up North through the wine country to show Tippi the sights. She hasn't seem too much of the wine country and maybe we can stop for lunch in Healdsburg. That is going to be a sight, two women with masks on who recently had heart transplants. I want to make memories with her that take our breath away! She has been such a support to me and I only hope I have given her the same. She brought her camera so pictures will be posted.


Maxwell's game last night was canceled, so Mark was a little disappointed. He has another game on Sunday and of course the All Star game on Tuesday. Today they are sight seeing and will go to the Hockey Hall of Fame. Matthew met a few friends in Toronto and stayed there overnight. He is enjoying the world of traveling. He will leave on Thursday for Florida to visit his friend Ann Marie and then next month its New York. I'm so happy he is able to travel and see the world. I know what a feeling it is to see other places. I have so many memories of my trips to Europe that it gives me hope to someday go again.


Have a wonderful weekend and I will post pictures soon. Tippi and I will enjoy making memories that take our breath away! This is our second chance in life to make memories that last forever!


Love,
Debbie

Thursday, January 8, 2009

Decadron Has Kicked In

Well its 2:00AM and I'm up. I took my weekly dose of Decadron yesterday and it has kicked in. Every week it is a different side effect. This week it seems, I'm wired. I can't sleep and decided to get up and post on my blog. I wrote two emails to friends already and will read the newspaper and do some paperwork.


I think I have some things on my mind that have kept me awake also. I keep thinking about my first infusion of the chemo drug, Valcade. The thought of a poisonous drug going into my blood stream gives me an awful feeling. I hope I won't be too emotional on Friday. Mom is concerned and decided to be with me that day. Mark will be in Toronto with Max or else he wanted to be there. I'm trying to be the big girl and not worry everyone, but my feelings (and the look on my face) cannot be hidden. My family and close friends, Gary and Debbie, know when I'm not myself and something is bothering me. I know in my shared heart that this is good and that the two drugs together will put my disease in remission and I can be healthy again. I'm still waiting to hear about my Amyloidosis Kappa and Lamba light chain count. The lab results still have not come in from Kaiser. I hope they are here soon because I have an appointment on Tuesday with Dr. Shriver at Stanford and he needs those results. I'm hoping they will be down to under 100 but don't want to get my hopes up. The last test was 206 on 11-14-08. I have been on Decadron for 2 months now and hope it has done something. In the mean time I wait.


Tippi is spending the weekend with me and I'm so excited. The world better look out for the "million dollar girls". We call ourselves that because between the stays in the hospital, heart transplant, drugs, labs, doctor visits etc., the cost of our care at this moment is over one million. My heart meds can be $3,000 per month, Decadron $6,000 and Valcade, they have told me is $12,000 per month. That is insane! Thank God for insurance. That reminds me everyone
should look at their insurance coverage and be sure you have appropriate coverage. I did not have prescription drug coverage, until my social worker, Janet Stevenson review my coverage. I almost had a heart attack before my heart transplant. I immediately changed my coverage to include drug coverage but have to pay more money up front each year ($3,000) before the coverage kicks in. As you can see by the cost of the monthly drugs that won't take too long to meet the deductible of $3,000 per calendar year. So please check your coverage. I never thought I would be sick and need insurance coverage.


Tippi gave me a beautiful poem to our donor family. I want to publish that on my blog but have asked the family for some more pictures of Jazmin with her sisters (there are a total of 5 girls), Mom and friends. I want to be sure my family and friends keep them in their prayers each day. Jazmin is such an important part of my life now and seeing her and her family makes me happy. I wish I could have heard her voice. But for now I have her family and friends who help me know Jazmin. Sonia, Jazmin's fiance Marco's sister will be coming to visit for the first time on the 24th. She was very close to Jazmin and I'm looking forward to meeting her. She will be married in August and sadly Jazmin was a bridesmaid. Sonia is sad that she will not be there physically but has asked me to be there. I feel this is an honor and I will honor her wish. I told her Jazmin will not be there physically but in spirit. Her heart will be there to feel the joy and happiness of the day. I promised her that. I hope each day, that meeting me and the things I put on my blog to honor Jazmin, brings comfort to the family and friends. I never want to hurt them in anyway. So look for my pictures of Jazmin and her family and the beautiful poem.


I have a link to Dr. Kevin Anderson's blog and alot of you have heard me talk about him. He is a doctor with the same disease Amyloidosis. He received a heart transplant on 8-15-08 and is currently receiving treatment for Amyloidosis ahead of me. So Dr. Kevin is very important in my life. He was there through the gruelling 3 months before Stanford said "yes" to put me on the transplant list and I will never forget the support he gave me. Look at his blog, http://www.kevinandbarbie.com/. He went to Tahoe with his family and the pictures are breath taking. That is what I have been talking about. There is a picture of him on a snow mobile and my first look at the picture was, "He is living his life and that is what a heart transplant
gives us - LIFE". When I speak of making memories that take your breath away,
that is what I'm talking about. Please take a look at his blog. It will take your breath
away! What memory are you going to make today that takes your breath away? I have been thinking about that alot lately!


Well its 3:09Am and I'm still awake, so what to do now. I'll read the yesterday's newspaper and do some paper work. I don't think I can go back to sleep yet. Have a wonderful day and enjoy this moment in time. Sorry for the lenghty post and the extra spaces above(sometimes this blog goes crazy) but the drug kicked in and the thoughts are just flowing out.

Love,
Debbie

Tuesday, January 6, 2009

Wearing the Mask

I decided I couldn't take it any longer! I wrote a letter to the Editor at the Press Democrat in Santa Rosa and it was published today. You can view it online at www.pressdemocrat.com under the editorials.


It felt good to express my feelings about wearing a mask in public. I told the Editor I feel the public should be more compassionate when seeing someone wearing a mask. It doesn't mean they are contagious but that maybe they are sick or recently had a heart transplant and they are trying to protect themselves from infection. I was happy the Editor decided to publish it today and hopefully I can change someone's view.


Kaiser made a mistake on Friday and didn't draw enough blood to do the Kappa and Lamba light chain lab work to determine my amyloidosis count. So yesterday, I had to go back to the lab and draw blood. Hopefully, I will have the results by Thursday. I meet with Stanford on Tuesday, January 13th to discuss my treatment plan and the results of these tests. Also, on Tuesday, Gary and Debbie will be taking me to the heart transplant support group meeting and then to Stanford. I'm so happy to see all my heart transplant friends and hope they are all doing well.


Tippi will be staying with me this weekend when Mark goes to Toronto to visit Maxwell. The "million dollar girls" alone at home - pretty scary! We are going to have so much fun! I'm looking forward to just being able to talk to her face to face instead of on the computer or by telephone. When we do see each other, we are both rushing between heart biopsy, chest x rays or clinic and never get time to visit. It's so comforting to have someone I can talk to about all the things we are experiencing. Makes you realize you are not alone.

Have a wonderful evening and enjoy every moment in time!

Love,
Debbie

Sunday, January 4, 2009

Special Moments

This weekend was a time for special moments. I think about the word "family" and what does that mean. Family doesn't always mean your immediate family. I am very lucky to say I have a wonderful immediate family which includes many, many (Italian) aunts, uncles and cousins. Also, included in my life, which I refer to as family, is the hockey families. I will never forget the wonderful memories I have with them.


Saturday night was a time to reflect on those memories. Mark and I attended Zach and Tory's engagement party at Tory's parent's house. We had so much fun! We got to visit with all of the boys and the hockey moms and dads. The funny thing is that they are not boys anymore. Most are married and some even have kids. Time does go by fast. What I would do now, to roll time back, to those days of traveling in the middle of the night to Las Vegas for a hockey tournament, watching my son Mark's team win the State Championship for Midget A, spending every weekend either in a cold ice rink or roller hockey rink. I wouldn't have changed a moment! Spending time yesterday with Rob and Marion, Terri and Joe, Dave and Darlene, Kathy and Marty, Doug and Sharon and Warren meant so much to me. We laughed and joked about all the wonderful times we had. I know that those moments spent with our kids made them what they are today. I am so blessed to have shared such beautiful moments.


Today is Sunday and I spent 4 hours visiting with Uncle Jake, Aunt Jeannie, Cousin Tammy, Joel and Anthony. Mom, Sissy Mary and I went to Tammy's house to see Uncle and Aunt Jeannie. Auntie Jeannie has recently been diagnosed with lung cancer and is being treated here in Santa Rosa. They have not seen me since my heart transplant and it was important for me to see them. I brought the pictures of the family in Sicily to share with Uncle. He had not seen the pictures of his mother's home in Sicily or the aunt and uncles who still live in the home there. Three years ago Mark and I went to Sicily to visit the family. They did not know I was coming and greeted us with open arms. It was a very emotional moment. I have the pictures of that meeting on my slide show. The thought of being in the home that my grandmother was born in and meeting her half brothers and sister was definitely a moment that took my breath away. Uncle Jake was so moved by the pictures he kept saying to me today, "Before I die I want to go to Sicily". It brought tears to my eyes. It reminded me of the first time I went to Italy. I took my Mom on that trip and we were in Portovenerne. I remember sitting in a plaza looking at the people and realizing they all looked like me, Italian. It was awesome! I want Uncle Jake and Aunt Jeannie to share that moment! Today was such a memorable day because I was able to share such special moments with my Uncle, Aunt and cousins. This is what family is all about! I am so lucky to have such a large family filled with uncles, aunts and cousins (1st cousins all the way down to 4th & 5th, I think). I told Uncle Jake, as soon as the doctors give me the ok to travel, I plan to visit Sicily again. This is my hope and dream!


So family can mean uncles, aunts and cousins, hockey moms, dads and kids or even close friends, who have been in your life for many years or just came into your life moments ago. You are a rich person to have a family!


This coming week I have my first chemo treatment of Valcade on Friday. I will let everyone know how it goes. I anticipate the side effects, according to Dr. Kevin Anderson, should be the same as what I'm experiencing now with Decadron. I am not supposed to lose hair and all that other nasty stuff associated with chemo. Valcade is a mild chemo and the side effects include tingling of fingers and toes, swelling and soreness. But each person is different, so I have to wait. No matter what, it is what it is and I have to do it! It will save my life!


Wishing you a wonderful week. Go out and make memories that take your breath away! I made quite a few this weekend!


Love,
Debbie

Friday, January 2, 2009

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