Million Dollar Girls 
Tippi
MeMaking Memories That Take Your Breath Away
Monday, January 12, 2009
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
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
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
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
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
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
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
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