Tuesday, April 28, 2009

Meeting at Stanford

Today I had an echo cardiogram at Kaiser hospital here in Santa Rosa. All went well and the technician said I have a very strong heart. Don't I know!!!!

He explained why I was taking the echo before the stem cell transplant. He talked about the electrodes and how the heart can be damaged during massive doses of chemo. Stanford requested the echo before the stem cell transplant and will take another after the stem cell transplant to compare. I remember Dr. Kevin saying how important your heart is during this procedure. It will bring you through it. I know how strong my shared heart is and I'm sure it will get me through it.

Tomorrow I have an appointment at Stanford to sign all the consent forms for the stem cell transplant. A week from now I will begin the first steps towards becoming healthy and living my new normal life. I know I will feel sick but what bothers me the most is being alone for so long in the hospital. I plan to bring plenty of movies, my crocheting, Italian tapes and books to read. I know there will be times where I don't want to see or talk to anyone because I will be tired and really sick. That's ok, I will deal with it. I'm just afraid of being alone through this. I did so well and felt so great after the heart transplant that I know this is going to be different.

I didn't feel very good over the weekend. The body soreness I get from Decadron was really bad and lasted through Monday. Today was much better. On Sunday, Mark and I, along with our neighbors Jeff and Christine drove out to Bodega Bay for lunch. I got to drive my new car with the sun roof open and the stereo blasting! The guys were not too happy but Christine and I sang songs along the way. It was so much fun! We took the route through Guerneville and along the Russian River. I like going out to the coast that way because you really see the beautiful countryside, vineyards and of course the coastline. The coastline is extremely beautiful with the big huge rocks in the ocean and how the waves crash on them. It was what I needed that day! I'm trying to take in as many sights as I can and I don't want to take those moments for granted! That is what life is all about! MOMENTS!

I'm so excited for this weekend because both of my hockey sons will be playing in the Snoopy Tournament. Not on the same teams, so this will be interesting! Maxwell can't wait to score on his big brother Mark! It will be lots of fun. I haven't seen Maxwell skate or play hockey for over two years because he has been away for so long. It has been so wonderful having him home. I know what I have been missing.

Make tonight a memorable moment in your life!

love,
Debbie

Friday, April 24, 2009

What A Week!!

Finally finished all the require blood, bone marrow biopsy and heart biopsy this week. What a week it was! I have never been poked, prodded or cut as much as I have this week.

Next week is an easy one just an echo on Tuesday. I like doing echo because I get to see my beautiful shared heart working so strong inside me. My beautiful angel Jazmin is making sure that my heart is pumping strong. Getting another NER three months in a row is awesome!! I am so blessed.

I just looked up all my results from the blood tests taken yesterday and everything looks pretty good. I have a meeting with Dr. Areria on May 4th to discuss the stem cell transplant and I'm sure all the tests she has ordered. Hopefully, nothing bad has come up such as the bone marrow biopsy, and the stem cell transplant with continue. I will keep everyone informed as soon as I know the results.

I meet with the coordinator at Stanford on Wednesday to sign all the consent forms. I remember the feeling I had when I had to sign the consent forms for the heart transplant. The lump in my throat was huge! Mom and I sat there in a daze thinking what is this woman talking about "a heart transplant". Mark, Gary and Debbie walked in shortly after and I will always remember the look on Debbie's face. It was like she was caught in a dream and this was not happening. I kept saying to them all "is she saying heart transplant for me". I felt like I was dreaming. But of course it was true and my life changed forever that day. I have always felt I was given a second chance at life but sometimes it can be so overwhelming to think I have someone else's heart in my body. But as I have said I am blessed!! I will never forget and will always be grateful to Jazmin's family for the decision they made that night to save my life.

And now I move on to the next step in my recovery. The stem cell transplant will not be a cake walk. I am not afraid and find it a challenge I am willing to take on. I want to fight the disease and win! I want a complete response from the stem cell transplant. I realize that I may have to do other things to achieve that but I am willing to do whatever it takes to have a "new normal life".

I want to travel again to Italy next year. I want to sit on the top deck of the Seabourn Legend and feel the ocean breeze slip by. I want to go outside at night on the deck and see the darkness and the waves crashing next to the ship as we sail along. Oh and the stars! What a beautiful sight! Almost a year ago I enjoyed a beautiful cruise to the Spanish Isles. I knew what was waiting for me back home. The dreaded answer to what was causing me to feel so sick. But at that moment in time I only wanted to experience the moment in time enjoying my wonderful cruise. I told the doctors I would deal with my situation when I returned. I'm glad I did because I would not have enjoyed the trip if I knew what I was faced with before. Things always work out for the best at the time!

Don't have much plan this weekend. Get to have my hair cut and dye for the last time before it all falls out next month. I'm ok with it. I'm worried that they will not let me dye it when it starts growing back in and I refuse to go gray. So we will have to wait and see. I just might have to wear my cute wig longer than I thought. I want to take a ride to Potter Valley on Sunday to visit Mark's Mom. She sounded so great the other day we talked. She is eating well again and feels much better. God bless her! We will then stop by the Schapmire's in Ukiah and visit shortly. I haven't seen Grandpa or Grandma Schapmire since I had the heart transplant and I thought it would be nice to say hi.

Have a wonderful weekend!

REMEMBER YESTERDAY,
DREAM ABOUT TOMORROW,
BUT LIVE TODAY!
Love,
Debbie

Tuesday, April 21, 2009

Tests and More Tests

My poor body has had enough! Yesterday I had the dreaded bone morrow biopsy. I was so nervous and asked Dr. Akthar if he would give me something stronger. The nurse came in with a shot of Demerol. That's all I needed. It still hurt and I had a few rough moments but I did it.



Today I had my heart biopsy at Santa Clara Heart Transplant Center. It went pretty good but I will never get use to it. So now I wait until tomorrow for the phone call to hear the news - rejection or no evidence of rejection. I'm hoping for a no evidence of rejection which will be my 3rd month in a row. That will be awesome especially before the stem cell transplant. Until then I wait!



After my appointment at the heart transplant center Mark and I went to Stanford to meet with Dr. Schrier and get blood drawn for the bone marrow transplant team. Dr. Schrier thought it was time for the stem cell transplant because my numbers are just staying at a stable level and he felt the Decadron and Velcade were not successful. I will take my last Decadron and Velcade this week before starting the stem cell transplant in two weeks. I wish I could start tomorrow. I'm ready!!



Mom and I went to the wig shop on Friday and I bought a beautiful wig. It is so cute! I tried it on for Mark tonight and he really liked it. I bought a few little cotton caps to wear in the hospital. I don't want to wear the wig in a hospital bed, so these are perfect! Terri Nappi will be coming down to Stanford on the 28th of May to cut and buzz my hair before it all falls out. I don't want that to happen. Linda Ford will also come with Terri. I will need all the moral support I can get!!!



Tomorrow I will stay close to home because I have to do a 24 urine test collection. Thursday it is blood draw day for both chemo and the stem cell transplant. I have no idea how many vials of blood they will take but for the heart transplant it was close to 40. Friday will be my last day of chemo!



Mawell finally got home on Sunday night late from Innisfil, Canada. He left Innisfil on Thursday and got stuck in Cheyenne, Wyoming for two days. Finally on Sunday the weather cooperated and he was able to get home late that night. It was so great to see him and have him home. He will try out for different teams this summer and decide where he wants to play. For now I'm enjoying every moment!!!


Wednesday, April 22nd continue posting:
I plan to bring my lap top to the hospital and continue writing on my blog.
Stanford said I can use my cell phone and lap top while I'm in the hospital. They said to bring movies, books/magazines, crocheting anything that will keep me busy. I will continue with my lessons in Italian on the Rosetta Stone tapes. I just wish I had someone to talk to that would help me to get over the hump in my lessons. I know alot of verbs and phases but if you don't use it, you lose it! I think I should go to Italy for six months and study there! I think I deserve it after all I have gone through! HA HA

My Sharks won last night and hopefully will continue to win. I fell asleep during the 3rd period so I didn't get to see the whole game but they won!

Sorry for the long posting but I have lots to say! Just got my call from the heart transplant center. Today is the day they call for biopsy results. I got another NER (NO EVIDENCE OF REJECTION). Third month in a row. I have the perfect heart just like Dr. Dana said the night she called me to say a heart was here. Jazmin was perfect and her heart certainly is. She has helped me through all I have gone through so far and will be fighting with me through the stem cell transplant. God Bless Her! My lab work is perfect and no change in medication.

What a beautiful day! Not to hot and not to cold. I'm home resting from all the biopsies these past two days and doing the 24 hour urine test. I need the rest. I'm tired of people poking and cutting into me. Enough is enough until tomorrow - blood draw. But today was my last day on the drug Decadron. My stem cell transplant will be successful and I won't have to take this nasty drug anymore.

Enjoy this wonderful day and all it brings to you!

love,
Debbie

Wednesday, April 15, 2009

UPDATE ON STEM CELL TESTS

The next few weeks will be one test after the next. Today I had a cat scan of my chest because of the pneumonia I had a few months ago. Stanford wanted to be sure that my lungs were cleared before beginning the stem cell transplant. Then I went to the dermatologist to check a mole on my leg. The mole on my leg was fine but they found one on my ear that was not. GREAT! So she took a biopsy and I will know the results in two weeks. What else? That's the last thing I need to worry about.



Monday and Tuesday next week are not going to be fun! I have a bone marrow biopsy on Monday and Tuesday I will be at Santa Clara Heart Transplant to do a heart biopsy, labs, chest x rays and clinic. Then I have an appointment with Dr. Schrier and Dr. Areia at Stanford. It is going to be a very long day. These tests are necessary and I will do everything to be sure that my stem cell transplant is a success.



I have echo scheduled for April 28th and then on Wednesday, April 29th I sign all the consent forms to go forward with the stem cell. The next week, May 6th I will start the injections and I'm on my way to my "new normal life". Mom and I toured the corporate apartment I will be renting during my stay as an inpatient at Stanford. It is beautiful! Two bedroom, two bath upgraded apartment with all the goodies. We are going to be so comfortable there. I wanted a two bedroom, so Mom and I have some privacy and especially because I'm up so early and Mom sleeps in later. This is going to be so perfect for us. Our first night will be May 6th till the 10th and then I will be in the hospital from the 11th to maybe the 15th. We will then go back to the apartment sometime between June 12th and June 15th when I am released from the hospital after the stem cell transplant. I really loved the complex and grounds. There are several other Stanford hospital patients living there right now. I was able to meet one lady who has leukemia and will begin her stem cell transplant on Friday. We will meet again when I check in.



Tomorrow I have labs and chemo on Friday. My lambha number went down from 234 to 197 last week. Going in the right direction but number still too high. We will see where I'm at next week. That will be my last chemo before stem cell transplant. No Decadron and No Velcade!


As you can see, it's a DECADRON night and I'm wired. I'm talking to Tippi on the computer. I just love her so much. She is so strong and such a support to me. I miss her and wish we lived closer. I told her when I'm done with the stem cell we have to go on a "girls weekend" again. I had so many beautiful moments with her that weekend she stayed with me.



I really miss seeing my donor's Mom, Evelyn and the girls. They have been sick for so long and have not been able to see me. We write and talk on the phone. I am so blessed to have met them. I think about them, Jazmin and Jamae everyday. I always send my love to them and only hope that as time goes on things will get better. I know you will never forget a child or children who have passed on but I know in my shared heart that Jazmin is with me and Evelyn everyday. She gives me strength to keep going and I know she is with her Mom too!



Tonight Erin and her friend Amanda came for dinner. Amanda had a stem cell transplant three years ago and is in remission from lympnoma cancer. She brought photo albums showing her during chemo and when her hair fell out. She answered so many questions and made me feel so at ease. I'm getting more and more anxious to get it over with. I called Terri Nappi tonight and she is coming on the 28th of May to shave my head after chemo. I do not want it falling out. I want to shave it off first. I am going to a wig shop Amanada told me about on Friday and try on some wigs. I want to either order the one I found on the Internet or buy one on Friday. I will let you know.



Till then, go out and make moments that take your breath away!

REMEMBER YESTERDAY,
DREAM ABOUT TOMORROW,
BUT LIVE TODAY!!!!!
Words to live by!
love,
Debbie
P.S. Maxwell is driving home from Canada tomorrow. Please say a little prayer for a safe journey home! I miss him so much!

Sunday, April 12, 2009

Happy Easter

HAPPY EASTER!
Yesterday I went to the Amyloidosis Support Meeting in Walnut Creek. Mom came with me and she really enjoyed meeting everyone. Kevin, Barbie and their girls were there and I finally got to meet Catalin and Rebecca. Of course, I told them how much their dad meant to me and how much he has helped me through this process. Dr. Kevin looks wonderful and is recovery each day from the stem cell transplant. I just can't believe how healthy he really looks. He still says he experiences fatigue but most side effects are minimal and he is on his way to a "new normal life". He hopes to be back at work in a few months and will be training for the big bike ride in October.
The guest speaker was a lady from the "Caregiver's Alliance". All the care givers met and discussed caregiving together. Mom said it was nice to be able to talk to others about caregiving.
Today will be a quiet day. Matthew and Danny came up from Los Angeles and Mark and Erin will be here this afternoon. I made a big pot of spaghetti sauce and meatballs. That's going to be our Easter dinner. Maxwell will be driving home from Canada starting Thursday. I'm so nervous about him driving so far but what can I do. The boys think I'm being silly to worry about him. They say "he's 18, Mom". They don't understand how Moms feel.
Have a wonderful Easter Sunday!
Love,
Debbie

Thursday, April 9, 2009

Cancer on $5.00 A Day

I just finished reading the book "Cancer on $5.00 a Day" by Comedian Robert Schimmel. It is a best seller and what an inspiration. I enjoyed the book and his humor towards his treatment of non-hodgkin's lymphoma. He used humor to get through the chemo treatments for 8 months.

He wrote these life lessons and I want to share them with you:

Keep your sense of humor, no matter what.
Create a purpose, a focus, and never take your eyes off it.
Figure out what's important to you. What's really important.
Be open. Try anything. You never know.
Love. You need love. Tons of it. A shitload of love.
Sometimes you need to be selfish.
You need support. You're in this alone, but you can't fight this alone.
The most precious thing you have is time. Don't waste it.
Your only human.
And, finally, once again -
Laugh.
God bless him, he is in remission and has been for years.
Love,
Debbie

Wednesday, April 8, 2009

Decadron Night

Well its a Decadron night and I'm wired and up. Erin came for dinner and she just left. Yes all we did was talk since 6 o'clock tonight. I had a wonderful time with her tonight. We talked about everything. Erin's friend Amanda had a stem cell transplant and was going to come tonight but had another appointment. She is planning to come next week. I want to talk to her about some of the complications she experienced during the stem cell transplant. I know everyone is different and I will experience things differently than Dr. Kevin and Amanada. It just helps to talk to others that have gone through it.

I have a slight dull head ache which is normal for taking Decadron. I hope I'm ok on Saturday because I have the Amyloidosis Support Meeting and I want to go. It doesn't matter, I will drag myself there. It's important to me!!!

Tomorrow I will do my labs at 7 in the morning and wait until the afternoon to see if I will be able to take Velcade on Friday. I hope my liver tests come out ok and Dr. Akthar let's me go ahead with Velcade. I also have a doctor's appointment with Dr. Akthar tomorrow to discuss the upcoming tests (Bone marrow biopsy, echo and pulmonary function tests) and the stem cell transplant. I will also know by Monday what my lambha light chain count is for this week. Reading Dr. Kevin's blog posting tonight, he is right those numbers are spurious (a new word I learned today meaning "not true"). These numbers go crazy and I have to realize that. I'm not going to put to much weight on these numbers until after the stem cell transplant. Dr. Kevin did say that they feel the numbers should drop at least 50% after transplant. So my number this week was 234 for Kaiser and 23.4 for Stanford. So my numbers should drop to 117 for Kaiser which is still too high. Kaiser's normal range is no more than 26. So we will have to deal with that. As for Stanford their range is 2.3, I believe. Dropping 50% my number would be 11.7. It makes me go crazy! I have to forget about it and just pray that the stem cell transplant will be successful and I can live my "new normal life".

Have a wonderful day tomorrow! Make moments that take your breath away! Tonight spending time with Erin, made moments that took my breath away!!!

Love,
Debbie

Tuesday, April 7, 2009

Waiting, Waiting and Waiting

Waiting! I was never the kind of person who would wait around for anything! I'm really, well I don't want to use the word "excited", because how can anyone be excited about a stem cell transplant. But I am. I want to get it over and begin my "new normal life".

This past week I realized for the first time that Decadron has been making me feel sore and tired on Friday and all weekend. Last week I was not able to take Valcade on Friday because my liver tests were elevated. Dr. Akthar said no and I would have to wait until this week. I took Decadron on Wednesday and by Friday evening I could feel the soreness coming on. By Saturday I felt terrible. I couldn't even touch my skin, it hurt so bad. Of course, the doctors have never heard of such a reaction - only me. I thought all this time it was the Valcade but I didn't take it on Friday and the soreness was there. So it's the Decadron.

The best thing about the stem cell transplant is that when it is successful, I won't have to take Decadron and Valcade. I will feel much better. I have had a taste of how it will feel when I have the two week break from these drugs. I felt TERRIFIC!

That's way I don't want to wait any longer. I want to get the stem cell transplant over and begin to feel better. I will still be fragile and have to be careful not to be around anyone who is sick, eat the proper diet and exercise to build strength. The doctors say it will be another 6-9 months before I can feel close to normal.

My lambha light chain count went up again this past week from 190 to 234. What a crazy number it is? Well so is the disease! I still think I'm ok because I have been stable around the low 200(s). I will see Dr. Akthar on Thursday for a checkup and discuss this more but I know he will say let's not worry about the numbers until after the stem cell transplant.

Dr. Kevin is doing well. Please view his blog for updates at www.kevinandbarbie.com or click on the link on the right side of my blog. He is such an inspiration for me. I'm so lucky to have him as my friend and support. Say a prayer for him.

This Saturday is my Amyloidosis support meeting in Walnut Creek. I'm excited to see everyone and let them know I have decided to go forward with the stem cell transplant. Dr. Ng will be there to discuss the disease and new treatments for remission. She is very knowledgeable about this disease and worked at Boston University in the Amyloidosis clinic.

Tomorrow I will visit clients in San Francisco for our monthly media group meeting. Unfortunately, most of the radio, TV and newspaper clients have lost their jobs and our group is slowly dwindling down to nothing. What a sad situation we have gotten ourselves into.

Have a wonderful evening! Tonight is Dancing with the Stars results night. Did you see Dante without a shirt last night? Did I say that! HAHA

love,
Debbie

Thursday, April 2, 2009

Dr. Kevin Anderson is Doing Great!!!

Dr. Kevin called me last night and I was so happy to talk to him. He is doing awesome. If some of you don't know, Dr. Kevin just completed a bone marrow transplant which I will start in May. He said he feels healthy but still very fatigue. He is so thankful to have been able to complete this next step towards recovery and complete response of the disease Amyloidosis.

Dr. Kevin has been my "Rock". He has gone ahead of me and set the path for me and others to receive heart transplants and now stem cell transplants for the disease Amyloidosis. Standford had not done a heart transplant on an Amyloidosis patient for over 20 years until Dr. Kevin had his transplant on 8-15-08. I was the second on 9-26-08. There are others waiting in the wings to receive a heart next. Then last month Dr. Kevin became the first heart transplant patient to receive a stem cell transplant with a heart transplant at Stanford under the direction of the Mayo Clinic. The Mayo Clinic has successfully completed over 20 such procedures. So thank you Dr. Kevin for the courage you have to be the one to pave the way for us to become healthy and enjoy our new normal lives.

Dr. Kevin is a devoted doctor and what I admire most about him is his way to explain things in a clear precise process that we can understand. Dr. Kevin went over all the tests and procedures I will be faced with this coming month. We talked about the stem cell transplant and what I will be faced with as to complications, if any. He reassured me that not everyone will experience the same complications. I felt so good talking to him and wish I was done and over with the procedure. I know the next few weeks will go extremely quick and I welcome it.

Mom will again be my caregiver for this next step of my recovery. She has been so strong and caring. I don't know what I would have done without her. I know it is not easy to care for an ill patient but she did a terrific job when I went through the heart transplant and I know she will do great during the stem cell transplant. Things will be different than the heart transplant as to food preparation and things I can and cannot do. First all water must be boiled, no uncooked food such as salads, raw vegetables and fresh fruit, all food must be cooked or processed. I will not be able to help cook any meals, as a matter of fact, I can't even enter the kitchen during my apartment stay. I have decided to rent a corporate apartment during our stay in Palo Alto. Last time we had a studio and it was small. I decided for about a small amount more, we could have a 5 star corporate apartment 2 bedroom, 2 bath. It is beautiful! Once discharged from the hospital, I have daily appointments at Stanford for 4 hours a day. At this time, Mom will be able to do errands and shopping because I am not allowed to do that either. Very different than the heart transplant. The risk is infection. I appreciate and love my Mom for all she has done for me during this time of my life. I love her so very much!

Dr. Kevin made several suggestions I am going to follow before entering the hospital on May 26th to begin the stem cell transplant. He suggested to begin eating the microbial menu (no raw food etc.) and to stay away from as many people as possible especially kids to prevent the risk of infection. He developed pneumonia and that was very risky. As all know I had pneumonia two months ago, so I really have to been careful. I think these are great suggestions and I will follow them. My goal is to recovery during 2009 and be healthy in 2010. I want to travel to Italy again next year, go back to work, enjoy the things I have put off doing.

I have complete confidence in my doctors at Stanford to care for me during the stem cell transplant. I will keep providing updates on my blog during every step of the process.

Have a wonderful day! Enjoy every moment in time. What I am going through is just a moment in time. It will pass and I will fight this and emerge healthy!

love,
Debbie