Tuesday, March 31, 2009

Great News!!!

Just read Dr. Kevin Anderson's blog and he is doing AWESOME!! He is doing so well that he might be able to go home on Thursday. That is incredible! It just makes me realize that I am doing the right thing going forward with the stem cell transplant. I want to start living my "new normal life" and be healthy. I'm not afraid!

I decided on Saturday that if my hair is going to fall out then let's start cutting it short now. So I found a picture of a wig and I had my hair cut to that style. It was a wig by Rachel Welch called Voltage. I love the style and its so easy to style. So next month I will cut a little shorter and then a few days after I receive the high dose of chemo I will have my friend Terri Nappi come to Stanford and shave my head. I don't want to start losing big chucks of hair. Everyone I have talked to who has undergone high dose chemo said the same thing, "shave it before it falls out". I will have my cute wig ordered by then and start wearing the wig when I leave the hospital.

Time will go by really fast before the stem cell transplant because I have so many doctor appointments, biopsy, tests and blood work to do. I found out yesterday that Dr. Dana said I do not have to have a heart biopsy until after I recover from the stem cell transplant. That's both positive and negative because I worry about rejection, but the biopsy can hurt sometimes too.
I have complete faith in my heart transplant doctors and the doctors at Stanford. They have always said their goal was to give us our life back and they have.

Well I just wanted to share the good news about the recovery of my dear friend, Dr. Kevin. Please continue to pray for him and send your blessings.

This news was a definite moment in time to cherish. I'm so happy he is doing well! Make moments in time to cherish everyday.

love,
Debbie

Sunday, March 29, 2009

My Decision

I have decided to go forward with the stem cell transplant in May. I know my decision is the right one because the last two weeks I have been off Decadron and Velcade and I feel great. I do not have the side effects like fatigue, soreness, headaches and much more. I want to be healthy and live my "new normal life".

Stanford gave me my calendar for the months of April, May and June. During the month of April I will be doing pre tests such as bone marrow biopsy, blood work, lung and heart function. On May 6th I will begin the Neupogen shots that will stimulate my stem cells to produce more stem cells. I will have these shots twice daily for 5 days. On May 11th I will be admitted to Stanford for 1-5 days for stem cell collection. Doctors need about 3-5 million stem cells collected. These stem cells will be frozen and stored waiting to be put back into me on May 29th. I will be able to go home until May 26th when I will be admitted to Stanford again for the actual stem cell transplant. On May 26th and May 27th I will be given high dose Melphalan (chemo). This is the bad kind of chemo that has many side effects including mouth sores, fatigue, nausea, hair loss everywhere and other things I don't want to mention. Stem cell transplants are very risky especially for a heart transplant patient. Well reality is that I would not have made it through a stem cell transplant with my old heart. I would not have lived long enough to complete 6-9 months of chemo to fight my disease. So the choice was made to receive a heart transplant first and then do the stem cell transplant. Dr. Kevin just finished his stem cell transplant and was released yesterday from the hospital. It was not a cake walk. He was very sick. The length of time he experienced the worst of the transplant was about 7-10 days. We both feel its worth the time being really sick then a lifetime on the drugs Decadron and Velcade.

On Friday, May 29th the doctors will begin to put my healthy stem cells back into my body. At this point my white blood cell count will be dropping to zero. So I think about the first week of June, I will begin to feel very sick. Hopefully I won't experienced the side effects Dr. Kevin did or not as bad. Everyone is different. During this time my healthy stem cells will be doubling and tripling. My body will become healthy with the new stem cells. My white blood cell count will slowly begin to climb back to almost normal. I'm not sure how far my white blood cell count will go up because of the new heart and the risk of heart rejection. Doctors have to maintain a fine balancing act with my new shared heart and the stem cell transplant. That's why it is so risky. Stanford has done alot of stem cell transplants but Dr. Kevin is the first and I will be the second to have one with a heart transplant. At the Mayo clinic they have successfully done 20 stem cell transplants on heart transplant patients with Amyloidosis. WOW this is so much to take in!!!

If all goes well my stems cells will engraf and I will begin to feel better. When my white blood cell count reaches a safe level the doctors will release me from the hospital. I will then spend up to 30 days in an apartment close to Stanford. I have to spend at least 4 hours a day at Stanford taking tests and blood draws to check for rejection or infection.

I decided to rent a corporate apartment in Mountain View close to Stanford during this time. They are beautiful. Last time after the heart transplant I stayed at a residence inn. It was nice but very small (studio). Mom and I will need more room this time because I am not allowed to leave the apartment only for doctor appointments at Stanford. Last time I was able to go out of the hotel room for grocery shopping, walks or for a ride doing errands. This time Stanford is very strict and I will not be able to go out of the apartment at all. They said maybe on the last week there I could go for walks around the complex, maybe! So I want a really nice place to live if I'm going to stay for that long. The apartment is two bedrooms, two baths with a living room and full kitchen. I even asked for a washer and dryer so Mom won't have to carry laundry to a laundry room by herself. So I think we will be very comfortable and safe.

It's so hard to comprehend going through all this. I keep thinking I will wake up from a bad dream and this is not happening to me. But then again I do not wish this on anyone. 2009 will be the year to be healthy. Next year 2010 will be my "new normal life"!!! I will live to travel, share special moments with friends and family and enjoy every moment I have left on this earth. I hope you will too!!!

Please pray for me during this time. Pray for the strength and courage I need to get through the next phase of my recovery. Everyone helped me through the heart transplant and I know everyone will be here for me through the stem cell transplant. From the bottom of my new shared heart "Thank you"!

Enjoy this special moment! I am!

love,
Debbie

Wednesday, March 25, 2009

Doctor Appointment Stanford Hospital

Great News!!! No evidence of amyloid in my new shared heart!!!! Yeah!!!


I am so grateful for the blessings of a beautiful shared heart. Jazmin is always on my mind and I know she is with me every step of the way through these moments in time.


I told Dr. Wittles and Dr. Schrier that I am ready to go forward with the stem cell transplant beginning with testing in April and the stem cell transplant in May. I voiced my concerns regarding the complications Dr. Kevin has experienced. They both say not everyone will experience those kind of complications. I believe this is true because going through the heart transplant, each patient was different. We all have different experiences with the heart transplant. So I have to have faith in the doctors at Stanford Medical Center and I have to be as strong as I can be before beginning the next step. That includes mental, physical and emotional.

I have been walking, doing pilates, little weigh lifting including ball squats for two minutes. Mental and emotional I want to thank Dr. Flavio for his helpful suggestions and talks. I feel I am prepared for the next step in treating the disease and living a "new normal life".


I love the words "new normal life". Dr. Kevin expressed it to me when I visited him at Stanford. We will not have our normal lives back but a "new normal life". I'm ready for my new normal life with the disease in complete response.

Have a wonderful day! I had a nice walk today and enjoyed the beautiful scenery of trees, vineyards and flowers. Life is good!

Love,
Debbie

Monday, March 23, 2009

A Wonderful Weekend

Title to this posting says it all, "A Wonderful Weekend". This was my first weekend away since the heart transplant. There were so many wonderful moments!

Gary and Debbie came to pick up Mark and I on Friday around 6:30AM. We wanted to get to the hotel early to enjoy the beautiful rooms. We made it to Beverly Hills in six hours. Got to our rooms and decided to have lunch at the hotel's restaurant called "Parq". What a nice lunch. After lunch we went to our rooms to rest. Unfortunately, I had a bad headache all day since 4:00AM. I kept taking Tylenol hoping it would go away but by 6:00PM it was getting worse and I was stressing thinking something is wrong. Matt and his friend Danny came to visit before dinner. Matt kept saying to take Excedrin Migraine but I have been told not to take anything unless it is approved by the doctors. So I decided to call the doctor and ask. Dr. Park said no but that I could take Vicodin instead. I thought about taking it sooner but I'm so afraid to get hooked on it, so I don't take it. I took the Vicodin and not more than a half hour later my headache was gone. I felt so much better but my night was ruin. I had already missed going to dinner and Mark and I had to have dinner in our room. What a disappointment because Mr. Kasikci had arranged for a special dinner in the hotel's restaurant kitchen. He had the head chef cook whatever we wanted. Gary and Debbie went and had a wonderful dinner. They said it was so fun to watch the chefs in the kitchen cook the orders and see the whole process of how the kitchen operates. The chef cooked them a fabulous dinner. Mr. Kasikci said next time I come to the Montage I will be able to do it again.

The next day was Saturday and Matt came early in the morning and pick us up to spend the morning with him. Matt is buying a home and he wanted to show Mark and I the places he has been looking at. We had breakfast and looked at all the condos he has been bidding on. Matt brought us back to the Montage in time to meet Dan and Kathy Conley for lunch. We had a great time and of course a wonderful lunch. Debbie, Kathy and I had spa appointments at 3:00PM and the boys including Matt got to drive the hotel fancy cars around Beverly Hills. Matt was thrilled!! My facial was so relaxing and the hotel's spa is so beautiful. I enjoyed it so much. Kathy and I sat after in the ladies lounge for an hour just talking about what I'm going to be faced with once I begin the stem cell transplant. Kathy is a five year survivor of breast cancer and she has been such a support to me. Most of what I have gone through or about to go through she knows how I feel. It's such a comfort to have her support. We had to rush and get ready for dinner at 7.

Dinner was at the hotel's signature restaurant called "Muse". It was upstairs from the Parq restaurant and I climbed both flights of stairs with no problem. Six months ago that would not have been possible. Our dinner was so good and I was stuffed by the end. One problem with all this good food and eating out breakfast, lunch and dinner. My feet and ankles swell up and I was retaining water. I start taking my Lasix but it didn't work. The drive for six hours sitting in one spot and not moving around did it also. I'm happy to be home today eating normal simple foods, went for a long walk this morning and feel better. The ankles are still alittle swollen but I think by the end of the week things should be back to normal. We left early Sunday and stop to have dinner at Max's in Kenwood. I came home and went right to sleep. It felt good to be home!

No results today regarding the heart biopsy for amyloid. Hopefully tomorrow I will get those results. It's taking so long. No news is good news, so they say!

I have my appointment tomorrow with Stanford, Dr. Schrier regarding the stem cell transplant. I will let him know I have made the decision to go forward with the transplant and begin testing in April. If all goes as planned, I will begin the stem cell transplant in May and finish by the end of June.

Tonight is my favorite TV show, "Dancing with the Stars". So it's time to get dinner going and watch the show.

I had a wonderful weekend but my camera's battery was dead so I couldn't take pictures to share. Trust me the Montage in Beverly Hills is a beautiful hotel and I had so many wonderful moments I will never forget. Thank you to Gary and Debbie for the extra special things they do to make my weekend special. Thank you to Mr. Kasikci for the beautiful room. I enjoyed staying there and look forward to my next stay.

Have a wonderful evening and enjoy the special moments.

Love,
Debbie

P.S. Please say a special prayer for Dr. Kevin Anderson who is currently undergoing the stem cell transplant. You can view his blog from mine under "Heart Transplant Friends".

Wednesday, March 18, 2009

Biopsy Results

It's Wednesday and all day I waited for the "call". Finally at 2:30PM after having a wonderful lunch with Sarah Shaker, my client from Instituto Laboral De La Raza, I decided to call the heart transplant center. I was told they were calling everyone and would call me back. I waited another two hours and again was told they would call me back. I was so anxious and started having a tension headache, so I thought I'm going to go for a walk to get it off my mind. About halfway through my walk, my cell phone rang and yes finally it was "Sue". As we made small talk about why they had not called soon, my mind kept thinking "be strong if it's bad news". I said to Sue, "ok give me the news". She laughed and said, "Debbie you are NER". I screamed a loud "YEAH"! I was so happy, two months in a row NER! Now this means I can go to Beverly Hills this weekend, I won't have to have a biopsy for two months (6 months post transplant, can you believe that), and I'm finally off Presidone (steroid).

I am still waiting for the results of the heart biopsy for Amyloid. Sue said that could take a few more days to receive from the lab. My heart tells me it will be negative, so I'm not worried. Jazmin is watching over me and she will not let anything happen.

Tomorrow I will spend the day packing and getting ready to go to Beverly Hills. I'm so excited to stay at the new Montage Beverly Hills. I think I will have either a facial or pedicure or maybe both. HA HA! I'm just happy to go away for a weekend trip. It's been a very long time!! I will see Kathy Conley and her husband Dan on Saturday. Debbie, Kathy and I will spend time together window shopping on Rodeo Drive and going to the spa. There is one shop that has beautiful evening dresses that I want to go into. Every time I have gone to Beverly Hills the store was closed. I hope I can go inside this time. Although I have gained alot of weight I don't think I will be able to try any dresses on, because we all know most movie stars are a size "0", it will be fun just looking at them. I can dream and maybe someday I will be able to try one of those dresses on.

Have a wonderful weekend. I will bring my camera and take lots of pictures to share. I plan to make many moments that take my breath away!!!

love,
Debbie

Tuesday, March 17, 2009

Heart Biopsy and Stem Cell Transplant

Just got home from Santa Clara Heart Transplant Center for monthly heart biopsy. It's so funny how all of us heart transplant recipients ask "whose doing biopsy today" and then we wait for the answer. We all have our favorites. "Jo Jo" from Stanford seems to be the one most like. He's very good - in and out quick! I like that!

Along with the normal heart biopsy today, Dr. Dana ordered a biopsy for amyloid. This is going to be the ultimate decision whether I moved forward quickly to stem cell transplant. My lamba light chain count only went down to 190. Wow its like chipping at cement! To be honest it makes me so mad at times. I will not let it get me! Amyloidosis is in for a big fight!!! Decadron and Velcade seem to keep it in a sable mode and that's ok. I want complete response.


I went to Stanford after biopsy today to see Dr. Kevin Anderson. For those of you who don't know, Dr. Kevin has Amyloidosis and had a heart transplant on 8-15-08. He has been my rock! Dr. Kevin has helped me get through some rough times prior to transplant and coping with the disease. Dr. Kevin is currently undergoing a stem cell transplant. He looks wonderful! OK, yes he's in the hospital, confined to his room but he's almost done. I want to be there! Dr. Kevin is so easy to talk to (that's the doctor in him). I sat there throwing question after question at him and he calmly answered in terms I could understand. So far things have gone well. He felt today was the first day he felt bad and gave himself a health score of 64. The mouth sores are beginning and he said next week will be the roughest. That is when his white blood cell count goes way down and there is so much risk for infection. His stem cells need to start multiplying and increasing his white blood cell count. That could take another week or two. He feels the stem cell transplant is worth it, so not to be on the high doses of steroids and chemo for long periods of time. I'm starting to understand it all. I agree. The steroids are awful!!!


I have an appointment next week at Stanford with Dr. Schrier. I have decided to start the preparatory procedures in April. Dr. Kevin said it takes about a month for tests such as bone marrow biopsy (YUCK, not another one), lung capacity test, blood tests and who knows what they have up their sleeve. Once tests have been completed then I will begin the stem cell transplant process which includes many different procedures. So if Dr. Schrier agrees I will begin stem cell transplant sometime late May. Once completed, if all goes well, the disease will be in complete response and I will be off of Decadron and Velcade.


Mom's birthday was yesterday and she came with me to stay at the hotel. We had a wonderful evening together. I ordered dinner in our room and we sat and watched "Dancing with the Stars". Ate hot apple pie and ice cream for her birthday. It was so much fun! I don't know where I would be today without Mom. She was there for the heart transplant and now again for the stem cell transplant. I'm lucky to have her!


So now I wait for the results from today. I don't think I will know anything about the amyloid biopsy until Friday or next week. I know it is going to be negative! As for the heart biopsy, that will be negative too! I want to go to Beverly Hills this weekend for my first big outing. Dr. Dana said ok to go if everything is ok with biopsy, which I know it will be. I'll post tomorrow results!


I posted before this post a poem from a friend in Virginia Judy, who also has Amyloidosis. She found my blog and started writing to me. She has undergone a stem cell transplant and has been very supportive. I talked on the phone with her for over an hour asking questions about the disease, stem cell transplant and chemo treatments. She sent the poem to me through a link from a man name Jay. Jay also has Amyloidosis but has been in complete response since 1994 after a stem cell transplant. So in his words, "Don't Quit" when things go wrong! The link to his web site to read his book, "Heart like Cement", the Amyloidosis patient survival book is http://sites.google.com/site/curedofamy/Home/my-page.

Have a wonderful evening!

Love,
Debbie

Don't Quit!!!!

"When Things Go Wrong"


When things go wrong, as they sometimes will
And the road you're trudging seems all uphill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.

Life is queer with its twists and turns
As everyone of us sometimes learns,
And many a failure has been turned about,
And he might have won if he stuck it out,
Don't give up though the pace seems slow
You might succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down
How close he was to the golden crown.

Success is failure turned inside out,
The silver tint on the cloud of doubt,
And you never know how close you are,
It may be near when it seems afar.
So, stick to the fight when you are hardest hit,
It's when things seem worst, that you must not quit.

By Edgar Guest

Sunday, March 15, 2009

Sissy, I tried to do it the other way, but this is the way I had to do it....
Love you
Your Little Sis.
Kathie

Wednesday, March 11, 2009

Support

I never understood what the word "support" would really mean until I walk into the heart transplant support group meeting on 8-12-08. Yesterday it finally hit me.

I went to Vallejo and pick up Tippi and away the "million dollar girls" went to support group. We arrived earlier to see many friends, Norm and Mary, Ken, Steve and his wife, John, Leroy and his wife and Leo. There were many in patients waiting for a heart or just admitted to receive medical treatment for congested heart failure. I have to say there were more than I have seen since my first meeting in August, 2008. It's really sad to see those patients waiting for a heart and not knowing what the future holds. I don't like to use the word lucky because I don't find it was luck that brought my shared heart to me so quickly. I feel "blessed". I feel blessed that Evelyn, Jazmin's Mom made the decision to donate her beautiful daughter's heart to me. I feel blessed that my shared heart, Jazmin's heart, is so perfect and we are a perfect match. Evelyn has told me over and over again, how strong she was and it is true. I have had so many NER (no evidence of rejection) biopsies. I'm blessed to have Evelyn and her beautiful girls in my life. I'm truly blessed! Support group has helped me through the transplant candidacy process and just knowing each and everyone is there to help you get through the tuff times and the happy times.

Happy times are moments when you first see a person who has been waiting for a heart and she walks in. That was Mary. Mary waited in the hospital at Kaiser and Stanford for over nine weeks. Mark and I visited her at Stanford last month after biopsy. I have to say she looked awful and I told Mark I was so afraid a heart would not come in time to help her. But then, on February 27th a heart came and Mary was transplanted. She looked beautiful yesterday after just one week. So full of life and grateful for the gift she has received. She made us all cry with happy tears!

Next month I plan to take a picture of my heart transplant friends for posting on my blog. I had a wonderful day with Tippi. We went to support and then to lunch. We had so much fun yesterday! Tippi was able to get out and enjoy the weather and I was able to enjoy her friendship. We talk all night long on the computer instant messaging each other. Monday night we had so much fun messaging each other about "Dancing with the Stars". Dante, the naked guy from Sex and the City movie is competing and Melissa the bachelorette who just got dump was on too. It was fun to watch! I gave Tippi the same 15 minute Pilate book that Carrie, my Pilate's instructor gave me. Tippi started today and loved it. She can do the exercises with ease and I think it will really help with her limitations from the disease, FA. I'm committed to helping her get strong and be the person she wants to me. She is a beautiful loving individual. I'm blessed to have met her!

Today I got to go to San Francisco for the Media Credit Meeting I would have each month before I got sick. It's been since September last year that I have gone. It was so great to see my clients and talk business with them. It really made me feel "normal". You must think what is she talking about, but when you get sick so quickly and your life changes so quickly, you value "normalcy". It's those every day things that we take for granted that I want back. I want my job back, I want to walk into a restaurant sit down and order and not worry about infection and large groups of people, I want to go to my trailer now and spend the night and wake up to the beautiful scenery all around, I want to travel and go back to Italy, I want to go to sleep at night and not think about my shared heart or the disease I have, I want to be "NORMAL"!!! Today I felt normal!!!

I've been reading the book "Cancer on $5 a Day" by Robert Schimmel. Robert is a comedian who had non hodgkin's lymphoma stage 3. His book is so inspiring and very direct. He uses comedy to tell his story. I find myself laughing out loud at some of the things he says. But then there is the serious inspiring side to his writing. He talks about all the BMWs, Rolex watches and the finer Tiffany trinkets can not help you when you are faced with Cancer and death. He stresses living the moment and enjoying each one because you never know when the next one will come. It's what I'm living!

Tomorrow is lab work before chemo treatment on Friday. Friday will be my last day for this second course of Velcade. I will have a two week break before starting course 3. Please view Dr. Kevin Anderson's blog (quick link on my blog see below on right side). He is currently having the stem cell transplant and is posting his thoughts each day. Please say a prayer for him.

Enjoy the moment!

Love,
Debbie

Friday, March 6, 2009

A Day At Stanford

Today I spent the day at Stanford meeting with Carolyn, social worker for the stem cell transplant clinic, Dr. Sally Aeria, stem cell transplant doctor and Zoe, nurse coordinator . It was a long four hour meeting but cleared up some many misconceptions I had about the stem cell transplant procedure.

Carolyn discussed the details involved in the stem cell transplant as it relates to hospital stay, hotel/apartment stay, diet, precautions, and the dos and don'ts. As she stated, I will be staying close to Stanford the first week while I undergo injections of a drug called neupogen that stimulates the production of stem cells. After the one week injections, my stem cells will be removed and stored (frozen) until transplant day. After one or two weeks at home, I will be admitted to the hospital for about 10-12 days. During this time I will undergo massive chemo using the chemo drug Melphalan. What this will do is destroy the Amyloid production in my body prior to the new healthy stem cells being put back into my body. Yes, I will experience all the nasty things associated with chemo such as nausea, mouth sores, hair loss and pain. Although this does sound awful the doctors have assure me that they will do everything to relieve whatever I am feeling. Once the doctors have determined the day, I think she called it day Zero, my stem cells will be placed back into my body. These are healthy stem cells that have not been affected by the disease. They will take over and multiple and make new healthy stem cells. Dr. Aeria stated that I will be feeling healthy and normal at that point. I will be released from the hospital to begin the hotel/apartment stay for approximately 2-3 weeks.

During the hotel/apartment stay there are many restrictions I must follow. No visitors allowed except close family and visitors who do come must be healthy and follow the precautions of hand washing and wearing a mask. I cannot cook or prepare any food. Matter of fact the doctor said the kitchen is off limits to me during this time. All food has to be cooked and processed not raw. I cannot go out to restaurants or have take out during this time. It is very critical during this time to follow the strict guidelines set forth by my stem cell transplant doctors. All these precautions are to avoid infections. After the hotel/apartment stay I will be released to go home to recover. The restrictions will still apply at home but some will be lifted such as food preparation. Visitors are still required to be healthy and wear a mask. Dr. Aeria said I will not be back to normal immune system function for 6-9 months. My immune system will still be at what we call immune suppress due to the heart transplant but not as low as when going through the stem cell transplant.

So when will this all take place. At this point, Dr. Aeria said that the best time to have a stem cell transplant as a heart transplant patient is up to one year post transplant but ideally the perfect time is 6-9 months post transplant. That means end of March to end of June. Now all can change if my numbers go crazy or if amyloid starts depositing into my heart. I am scheduled for a heart biopsy to check for amyloid on the 17th of March. I have told Dr. Aeria that if one of those two things happen, then I will schedule the stem cell transplant immediately. So at this point my hopes are to continue the chemo treatment of Decadron and Velcade and wait the two or three month period. So only time will tell.

I received my 3rd dose of the second course of Velcade today. Just as last week tonight I'm feeling the effects like last week which included soreness under my neck, shoulders, arms and down the middle of my back. Hopefully tomorrow it won't be worst. I don't have any plans tomorrow and will rest and relax.

I thought today as I sat there at Stanford how did this all come to past. Just last year my life did not include surgery, doctors, hospitals, pills, transplants and all this crazy stuff about my disease. Where are you today? Realize how things can change and how short life is. Enjoy each day and moment on this earth. I will fight this disease to the end. It will not get me. But one thing is for sure life will be different from now on. I want more moments! I want more moments that take my breath away! That is what I want to live for!

Enjoy the moment!

Love,
Debbie

Tuesday, March 3, 2009

When will the Day Come

When will the day come where I don't wake up and go to sleep thinking about my disease. I'm not even worried about my shared heart. It is a beautiful strong heart and I feel great. But there is that looming thought of the disease which has changed my life. I want to wake up and not think about the word "Amyloidosis".

Last Friday, I received my second dose of the second course of Velcade. By 5:00PM that night my neck, down to the middle of my back was so sore. I woke up on Saturday and felt awful. All day my body hurt. I'm only able to take Tylenol and didn't want to take Vicodin which is so strong. I was able to go to Rachael's surprise birthday party and tried to go to dinner at Markie and Erin's house. I couldn't do it and left early. I came home, ate some cream of wheat, took my pills including a sleeping pill and went to bed. Sunday I woke up feeling better and that feeling has been gone since then.

BUT, tomorrow is Wednesday and I have to take Decadron. Decadron makes me feel wired, so I won't be sleeping much tomorrow night. The good news is that my Lambha light chain count went down again to 207 from 311. Those crazy numbers drive me crazy. I don't want to get too excited because they go up and down so quickly. I will do my lab work on Thursday and see what the numbers are this week after two doses of Velcade. I would be so happy to see those numbers go down under 100. That would be GREAT!

I'm so happy the time is changing this weekend. I love summer and when the time changes I know summer is almost here. I plan to spend alot of time at my trailer in Lake County relaxing and recovering. It is so peaceful there and I enjoy it so much.

I am looking forward to the dry weather this weekend. I wish I could do some gardening but I can't touch dirt. Now believe me I'm happy about that but still want some things done in the yard. My iris plants need to be separated and planted on the other side of my yard. So I think I will show Mark how to do it and hopefully we can do it. The builder planted these plants all in purple on one side of the yard and each year I keep saying I'm going to replant some on the other side, so this is the weekend.

I have my stem cell transplant meeting on Friday. I plan to sign the documents authorizing the stem cell transplant when I need it. We will see the transplant team at 1:00PM to discuss the procedure. I want to get as much information as possible before I have to do it. As you all know, Dr. Kevin Anderson, is currently undergoing a stem cell transplant (please refer to Kevin's blog site: WWW.kevinandbarbie.com for daily updates on his progress. Please pray for Kevin during this time.

Tonight is another night of The Bachelor. Wow what a crazy night last night! I plan to watch my Sharks play at 7:30PM and then the Bachelor.

Have a wonderful evening!

Love,
Debbie