Catching Up on Things

Time sure goes by fast. January is almost over and we just started the new year. I'm not even used to using 2010 on everything. It's hard cause for 10 years we have been showing the year as 200_ and now we have to slip in the 2010. That throws me off. Or well I'm sure in a few months it will be old hat.

I don't have much to report these days. Things are going quite well with chemo and my test results. Last post I reported another no evidence of heart rejection - 6 or 7 in a row. My lambha light chain count went down from 119 to 102. I'm praying this month after this cycle of chemo it will be under 100. What an accomplishment if that happens - I mean when it happens. Considering last February I was at 341. The doctors contribute the drop to the stem cell transplant finally kicking in or maybe the increase in the dosage of Velcade each week. I don't care what it is just keep going down. Normal range is 26 so I do have a ways to go but its going in the right direction.

I feel very blessed and lucky when I look back on my disease. There are people out there suffering each day with this disease with no hopes of a cure not even the chance to receive a heart, kidney or liver transplant that will extend their lives or give them the opportunity to receive treatment like a stem cell transplant or the newest treatments available because they are too sick. Some go undiagnosed and then its too late. I was lucky to have very good doctors who recognized the symptoms and took action immediately. I was lucky that Stanford started doing heart transplants on Amyloidosis patients after 20 years and as you know Dr. Kevin was first and I was second. Then came the stem cell transplant. Stanford never performed a stem cell transplant on a heart transplant patient. Again Dr. Kevin was first and I was second. I know we will or have been written in the medical books for this but that doesn't help those out there who go undiagnosed with this disease.

I have a passion and that is to get the word out to the world AMYLOIDOSIS. I wrote to Oprah and asked her to view my blog and read my story and help me save a life. I asked her to do a show on the disease Amyloidosis. Not only will my story tell the facts about the disease but it also will talk about heart transplant, stem cell transplant, organ donation, chemo treatments and much more. I'm hoping she will consider it. The word has to get out. Recently one of our support group members died after being diagnosed only 2 months before. Again, his cardiologist did not recognize that it was Amyloidosis and it was too late for a heart transplant. God bless Bill. Please pray that Oprah will grant my wish and help save a life!!

This weekend we will go to the trailer again. It was soooooo cold there last weekend. My heater in the trailer broke (so I was told - another story). A friend of ours came by and look at it and it was only dirty inside and he got it running perfect. That will help when we first get there to heat the place up and then I can use my little heaters. The trailer was 48 degrees last Friday. It snowed on the hills behind us. By 12:30AM that night it was 68 in the trailer. So the big heater will help heat things up quick and then I can use the others. We got the new windows and Mark is picking them up tomorrow. Scott Ford will put them in on the 13th of February. We are only doing the patio side now and the other side later in March. That will help alot with the heat and keeping it cooler in the summer. Plus it will look so nice and the windows will slide open easier for me. The crank ones we have now are awful. They are the original 1969 slant ones that are cracked with little holes leaking air through them. They have to go!!!

Today I have an appointment at Kaiser for sleep apnea. I was tested positive with my old heart before heart transplant and now they want me tested again to protect my new shared heart. So today is the day. I hate wearing that device at night. I failed the first time and it took two times to get it right. So we will see how I do. If I test positive again they will recommend the night machine to wear to help me breath better. Maybe it will help with sleeping since I haven't slept good since the heart transplant. I take sleeping pill every night but I only get 4-5 good hours of sleep then I'm up. This is due to Decadron and chemo drug for the first few nights after taking them. Then I experience the crash on day 3,4 and 5 and don't sleep because I'm sore. Oh well I'm alive and doing great.

What matters most to me these days is making moments that take my breath away. I try each day to look at something that makes me enjoy the moment. It might be just seeing the sun come up, the stars in the sky, the beautiful rain and rainbows it makes, seeing my puppy Mia when I come home, seeing my new grandchild Markie for the first time in the 3D sonogram. This is what life is about. Its not about money, possessions or credentials. It's about enjoying every moment.

Have a wonderful day and enjoy a moment! I have started writing in my calendar each day a moment that took my breath away. What will it be today!

Love,
Debbie

More Good News

Every month I nervously wait for the results of my light chain count. This month was the same. I had a heart biopsy on Tuesday and of course I'm worried about that but then its waiting for the both results that drives me crazy. On Wednesday, I received the results of my heart biopsy. NER - no evidence of rejection. What great news! This I think makes 5 or 6 in a row. Jazmin and I are so perfectly matched. Then on Friday, I saw Dr. Acktar and he gave me the great news about my light chain count. The numbers are dropping and my count went down to 102. It's still dropping and that's all that matters. I can't wait for the number to go below 100. That will be a moment that takes my breath away!!! So for another month the same treatment, Monday Decadron and Tuesday chemo for three weeks.

I spent a wonderful weekend at the trailer on Saturday and Sunday. It was raining and I loved it! It's so cozy! Rob put a new light fixture in my kitchen and spare bedroom. They have been there since the trailer was new in 1969. They were so awful. It's little things like that, that make the trailer so homey. I can't wait to go back this weekend. It's my little place in heaven.

I want everyone to know that my long periods between postings doesn't mean something is wrong. Maxwell's charger for his computer is dead and he is using my computer alot. I promise if something is wrong, everyone will know about it before I even get a chance to post it.

I'm looking at going to Las Vegas for my sister Mary's 50th birthday. I keep thinking about the money. I hate that! My life is measured by moments and I hate that I might miss that moment. It's a special time for my sister and I don't want to miss it. I think about the moments that we will make that will take my breath away. I don't want to miss a moment!

This week is going to be really quiet except for chemo and labs tomorrow. With all the storms coming, it's better to just stay inside.

Have a wonderful weekend.
Love,
Debbie