Tuesday, October 27, 2009

The Numbers Are Going Down!!

Yesterday I received good news. My lambha light chain count went down again to 137 from 169. That is such great news! The chemo treatments of Decadron and Velcade are kicking in and lowering my count. Now can't get too excited I have a long way to go to hit normal of 26. Dr. Akthar says at some time it will reach a platto and even out. I hope it evens out around under 50. Next month will be interesting to see how far it goes down because I will have had a full dosage at 2.6 for 3 weeks. I only had 2 weeks of the dosage 2.6 and had such a great result. Time will only tell. I just can't believe how my life has changed and all I think about is numbers. White Blood Count, Light chain Count and more! Someday I hope I won't have to think about it anymore. I know that won't happen because there is no cure for the disease Amyloidosis. Just controlling it through chemo. I am blessed that the treatment is working. God bless that.

Not much going on this week. I am really tired especially at night. I don't sleep very well which I think is the problem. Last night I took my dosage of Decadron which keeps me up and gives me a dull headache. If it gets really bad I take Vicodim. Not that bad so far. Today I had chemo and all went well. Yesterday I had my monthly visit with Dr. Akthar, chemo doctor. He is very pleased with the results and said we will keep it up and hopefully the numbers will keep going down. I stood in line for almost an hour waiting for the H1N1 shot. I started to get nervous because there were little kids there getting the shot as a live virus through the nose. I am not supposed to be around anyone who gets the shot through the nose as a live virus for two weeks. So why did they have people like me standing next to kids getting the shot that way. I had my mask on and with my short hair, the nurses knew I was immune suppressed. Mom was waiting for me at Dr. Akthar's office and asked if he would give me the shot and he did. Thank God because today they ran out of the shots. I feel better knowing I am protected now. I have to be so careful not to get sick. My boys all got their shots, just the flu shot. Markie will get the H1N1 too because Erin is pregnant.

Erin and Markie had a doctor's appointment which the doctor canceled a half hour before and rescheduled for Thursday. They might be told the sex on Thursday if the doctor sees it right there in front of him. I will let you know after the doctor appointment.

This weekend I am going to the trailer again. I had a wonderful time this last weekend with Linda. It was so relaxing. We went to dinner Saturday and had a terrible meal. We went to Zino's Italian restaurant and ordered Veal Picatta. It came out as a square frozen piece of veal that tasted like ground veal and pork. It was awful. What kind of Italian would serve that. We went to breakfast on Sunday at the Grapevine Cafe. It is a new place with only 6 tables and it was great. We will go back on Sunday this weekend. Our heater is giving us some problems and the repair man was there today and said that he needed to locate a part. If he can then no big deal, if not it means a new heater. That is not good! He'll let me know tomorrow. We might be a little cold this weekend but we have portable heaters that we can use. Let's hope for the best.

Have a great week and weekend ahead. Go out and make those memories count.

Love,
Debbie

Friday, October 23, 2009

Not Much to Talk About

There hasn't been much to talk about. I guess that is a good thing. No problems with my health. Just the same old things going on. I had a break from chemo this week and that felt good. I was really tired on Thursday and last night slept all night without getting up once. It felt great. I have been having more numbness in the fingers and toes lately. Do not know if its medicines or the disease Amyloidosis.

Tomorrow I will be going to the trailer with Linda Ford. We want to spend some time together, go to dinner and just relax. Scott is hunting and Mark is painting Todd Jr.'s new house. I still have little things to do at the trailer, like fix my chair pads in the kitchen. I love the trailer. It's a place I can really relax and feel stress free. The minute I drive through the gates of the park, I can feel the stress go out of my body. Wish I could spend more time there.

Next week I will see Dr. Akhtar on Monday and find out my lambha light chain count. I hope I have another big decrease. That would be wonderful. All other lab tests have come out good this week. Next round of chemo starts up again on Tuesday with Decadron on Monday. I plan to get the H1N1 shot on Monday. Wow that is so scary when your immune system is soooo low. I'm so afraid of getting sick.

Erin will go to the doctor on the 27th. She is doing great. On November 17th we find out the sex of the baby. I'm excited but don't really care. Boy or girl, it doesn't matter as long as Erin and the baby are fine. I want a healthy grand child. Erin has more energy and is feeling better. I told her to enjoy the next 3 months and then its down hill again. Can't wait to see her big belly and my little grand baby moving inside her. That will be a moment to cherish!

Oh, I haven't said but my hair is coming back. It's so curly and thick. Wow the doctors were right when they said it would come back different than before. I can't wait to style it. My friend Laurie is so excited to start cutting it into some kind of style. We will just have to wait and see what my hair decides to do.

Have a wonderful weekend and enjoy every moment!

Love,
Debbie

Wednesday, October 14, 2009

Getting Back to Normal

Yes today it felt like normal again! I worked out with my personal trainer, Tim Rogers for the first time in a year. It felt so great and I didn't do so bad either. Well I didn't do 385 on the leg press but only 80 pounds for 7 minutes. Tim said it is obvious I need to go up on the weight but everything else I did fine. Wow it felt really good. Heart transplant has encouraged me to start building muscle and bone because of the drug Decadron which causes bone fractures. I'm starting slow and hopefully by January I can be back doing my normal exercises twice a week. I need to start walking again too. My ankle is doing fine so I think I can start soon.

Saturday I plan to attend my Amyloidosis support meeting in Walnut Creek. I miss seeing everyone and Dr. Kevin will be there too. The group has not seen me since stem cell transplant and I'm looking forward to talking to everyone about my results and current treatment. We are supposed to have a doctor from UCSF there to discuss our disease too.

After my meeting I'm driving to the trailer for the weekend. Scott and Linda will be there and Mark and I have lots of little things to do on the trailer. I need to dust the spider webs, rearrange my living room furniture and just do little things to get my little place ready for winter . I want to stock the closets and drawers with clothes, jackets and sweats so I don't have to pack every time we go up. I want most things there all the time.

An update on the ordering of the headstone. Evelyn and I ran into a problem with the online monument company. The headstone Jazmin picked out does not come in the size we need (32") for the grave site. They never told us that until we were ready to order. So now Evelyn has to choose another headstone. We are going to a monument company or two in Sacramento and look at them in person to make the decision. Hopefully, by next weekend we can place an order and it will be installed soon.

Have a wonderful weekend! Make those memories count. Today was a moment to remember.

Love,
Debbie

Monday, October 12, 2009

Busy Making Memories

I have been soooooo busy making memories. First, to the important news. No amyloid in my new shared heart. I am so blessed to have all my annual tests come back perfect including an NER (No evidence of rejection) and no amyloid in my heart. Also, the lambha light chain count is coming down from 211 to 169. This week is my last week for this cycle of chemo, which the dosage of Velcade was increased from 2.0 to 2.6. I hope the increase will keep the light chain count number going down. I will take the test next week.

This weekend was so much fun! I left on Friday and drove to Vacaville to pick up Ashanti, Jazmin's little sister. Ashanti spent the weekend with us. Friday night we relaxed at home. Saturday was so much fun. I made a big pot of spaghetti sauce and meatballs. We had dinner at Sean and Becky's house (Linda's daughter). Becky has three girls, Kennedy, Kaley and Capri. She has a big play room for the kids. Also that night Linda was babysitting Kenndel and Cody, two more grandchildren and Kennedy had a friend over too. There were five screaming girls and one boy. It was so crazy in the house that night. Ashanti had so much fun dressing up in play clothes, modeling and playing with the other kids. We didn't get home until 11:00PM and she was so tired. She fell right to sleep that night. Sunday we went to breakfast at my favorite little restaurant called Norm's Kitchen. Mark and Ron Rackerby came too before leaving for the 49er game. It was sad because it was time to bring Ashanti home. She fell asleep all the way home to Vacaville. I hope she had a good time and that the memories we made will stay with her forever. I know they will be with me forever!

This is what life is all about. It was so important to me to spend time with Ashanti. She is such a special little girl. She loved her big sisters Jamae and Jazmin and talked about them alot. It was nice to hear her tell me things about what she would do with her sisters and how much she misses them. Driving home was really sad and lonely. I missed her!

Oh I also cleaned out my closet and Marks. I took 6 full bags of clothes to the Goodwill. It felt so good to organize the closets and donate the clothes to Goodwill. I have been wanting to do that for months.

Mia goes to the groomer tomorrow for the first time. I'm so excited to see what she will look like after her first hair cut. I can't see her eyes and she looks like a shaddy dog. After she gets her hair cut she will look more like a shiatsu. She is going to be the cutest puppy!

I'm also asking for everyone to say a special prayer to my heart transplant friend, Jon Warren. I met Jon on 8-12-08, just 10 days after he received his new heart. Jon was a very special person with a great big smile. He was a gentle man! Jon suffered from heart failure for many years and finally got the opportunity to receive a new heart in July of 2008. Sadly, his wife Cheryl email me and said Jon passed away on October 4th. He had problems with his colon and antibody rejection. After a fierce battle including emergency surgery, Jon's body just couldn't do it anymore. My heart is broken. I will miss his beautiful smile and friendship. Jon was able to spend the last year doing what he wanted to do. Things he was unable to do with his old heart. Only God knows why he gave him just one more year. God bless you, Jon.

When I hear things like this I realize how precious life is and that every moment is precious. Making moments that take your breath away is my goal in life. I try to look at each day and ask myself "what moment today took your breath away". Ask yourself that same question and if you can't answer then you are taking life for granted. Life is short and we all know anything can happen but don't take it for granted. Spend time with family and friends, go for a drive, take a bath, give a child some love. Whatever it is that makes you stop and say "This is what life is all about".

Love,
Debbie

Tuesday, October 6, 2009

Is Life Getting Boring!

I can say life seems to be getting boring and I like it! This means the doctor appointments are getting farther apart except for chemo every week, it's back to the same old stuff.

I spent the weekend at the trailer again. I just love going up there. We had a little problem Saturday night with our heater. We couldn't get it to work and the next morning our assistant manager Tom tried to fix it but it needed to be checked out with a heating company. He was going to arrange the repairs and hopefully its not much and we can get back up there soon. We spent Saturday at Big Todd Schapmire's house. We brought a group of friends (Jane & Steve, Scott & Linda, Jeff & Christine and Bob Keyes) to listen to Big Todd's band. We had so much fun! Todd had a big BBQ and later the band played. It made me so happy and full of smiles seeing Big Todd living his dream of performing on stage (the Redwood Tree Stage in his backyard) to all his friends and family. The smile on his face will be a moment to remember. I'm so happy he is doing what he loves.

Yesterday I had my normal routine of Decadron last night and chemo today. Finally Stanford communicated to Kaiser that my dosage needed to be increase from 2.0mg to 2.6mg and today I received the correct dosage. I want to aggressively attack this disease especially now that I'm seeing my numbers go down. I'm so excited to go to the Amyloidosis support group next weekend and see the group. There are so many of them that have had one or two stem cell transplants and are really fighting this disease. All I can do at this time is continue taking the Decadron and Velcade each week and pray that the treatment works to bring the numbers down. I pray each night that my disease will go into complete or partial response and I can have a break from these drugs. I get to start working out with my personal trainer, Tim Rogers. Kaiser heart transplant feels this is the best thing for me. Yes I will start slow but just watch me go! I was in the best shape of my life before I was diagnosed. I really believe the condition of my body was the reason why I did so well through the heart transplant and stem cell transplant. I hope everyone reading this will understand how important it is to exercise at least 30 minutes a day. It's life saving!

Speaking of prayers, I know how much the power of prayer can mean to someone. So please pray for Auntie Mary Joan's new husband and my new uncle Don. He has suffered a relapse and is in the hospital. Pray that he can recover from this and get back home to Auntie Mary Joan. She needs him close to her and they have many more moments to enjoy.

This weekend on Friday I will be going to pick up Ashanti, Jazmin's little sister. She is going to spend the weekend with me and I am so excited. We are going to have lunch with Evelyn and I will bring flowers to the girl's gravesite. I can't wait to go there and see the beautiful headstone. Hopefully, it will be installed within the next 4 months. Ashanti and I will play with Linda's grand daughters on Saturday, go shopping and play with Mia. There will be plenty of moments made spending time with Ashanti. I can't wait! I called tonight and little Angelina got on the phone and said "Hi Debbie (at least 5 times) I love you (at least 5 more times) Bye Debbie" as clear as a bell. It was so cute. I'll never forget it.

So as I said life is getting boring but I like it! So now it getting back to living and enjoying the things I love to do. Spending time at my little trailer with friends, making memories with the people who mean the most to me, waiting for the moment I can hold my new baby grand child in my arms and just making every moment count.

Enjoy every moment!

Love,
Debbie

Thursday, October 1, 2009

It's Been a Year and Oh What A Year!

Can you believe it's been one year since heart transplant. This week has been a blessing!

One year ago, I received a call from Dr. Dana telling me she had the perfect heart waiting for me at Stanford. Today, I believe she was right! My shared heart and my angel Jazmin have watched over me and continues to give me good health.

On Tuesday and Wednesday, I underwent many tests including blood tests, EKG, echo, heart biopsy, right and left heart cath. All tests were perfect and today I received the call regarding heart biopsy - another NER (5 in a row). Now do I have the perfect heart!

Also, this week on Tuesday was the best news. My lambha light chain count dropped from 211 to 169. That was the best news ever!!! Hopefully, the Decadron and Velcade is finally working along with the stem cell to decrease my lambha light chain count. I know I have a long way to go to reach 26 but maybe this is it - it's finally going down. I pray each day that my count will start going down and my disease would finally be in complete or partial response. I hope the time has come.

Now for the last test results and that is whether there is amyloid in my shared heart. I don't think so but until they tell me yes or no - I worry.

Mom and I had a wonderful two days together. I know how hard it is for her to see me go through all these tests but I could not do it without her. She gives me strength to continue going on. I think about my new baby grand child, a healthy life, traveling, and living my life to the fullest. That's why I will continue fighting this disease.

This weekend I will spend relaxing at our trailer in Lake County. On Saturday, I am going to Todd and Sherri's house in Ukiah to listen to Big Todd's band. I can't wait. That will be so much fun! I think the weather is changing and it should be cold or cooler at the lake but it will be fun anyway. I really want to use our little trailer more this year especially in the winter time when its raining and stormy outside.

Have a wonderful weekend and enjoy each and every moment God gives you! They are special!

Love,
Debbie