Thursday, June 17, 2010

The Cutest Baby on Earth





Little Markie came to visit tonight while his Dad helped Papa Douglas carry the sheetrock to the little house. I was so happy to see him. I haven't seen him since last Monday because I have been sick. He too got sick and now Mom Erin is sick. I don't know if it was me or not but I feel terrible that they got sick. Hopefully everyone gets better soon!
He is growing so fast! He is smiling and cooing! It is so cute. I'm so happy to have him in my life. These are moments that take my breath away! Looking into his eyes and seeing this beautiful baby makes everything I am going through worth it. I want to be here to see him grow!
Love,
Debbie


Wednesday, June 16, 2010

Monthly Light Chain Count

The month has really gone by fast. I really enjoyed my cruise to Alaska and to be honest didn't think about being sick or what has happened this past year. Only the fact that I had to take all my pills each day did the past year and a half come to mind. Coming home and facing the daily, weekly and monthly demands to take care of this body. This includes chemo, doctor appointments and blood work.

Part of taking care of my body is to have monthly blood draws to check lambha light chains. In May as I reported, my lambha light chain count finally went below 100 to 96.5. I took the test this month on June 8th and Monday received the results. 80!!!! Can you believe it? 80!!!! I was so excited I jumped off the table and gave Dr. Akthar a big hug. On Tuesday, I met with Dr. Schrier at Stanford University for my checkup. Dr. Schrier is the Amyloidosis specialist at Stanford. He was happy with my results but is still very cautious. I asked again for a break from chemo and Decadron. The answer was NO! He said that there are a total of 75 patients being treated at Stanford with Amyloidosis. Only three have had transplants. Of course those three are Dr. Kevin, Yolanda and myself. He said each patient is different in type of
light chain (Kappa vs Lambha) and how we respond to the types of treatment. Some patients are on Decadron/Velcade or Decadron/Revlind or Decadron/Malvalyn (spell?). He said all of us are responding differently. He feels I should continue with my current treatment until my numbers are the lowest possible. The normal range for lambha light chain count is 5-26. I feel he is right that I should continue until the count is as low as possible. I can't take the chance of it going up after doing everything I possible can to get low. I don't want to face another stem cell transplant because my count is out of control.

Yes, I'm disappointed that I can't have a break but I'm also very blessed that my count is still going down. There are many others out there who have not had the same results and are fighting for their lives. I have to remember this is a fatal rare disease. It can turn on you at any time and destroy organs.

My life has changed but I'm still here enjoying moments. Moments that take my breath away. Moments like seeing my little grandson smile for the first time, enjoying my cruise to Alaska, spending time at the trailer with friends. Thank God for these moments!

What's happening today. Well, I'd like to get over this cold I have had for over two weeks. Wow this is awful! Being immune suppressed it takes my body time to feel better. I hate being sick. I can't see my little grandson and I feel terrible. I'm also having problems with my back. Today I saw a doctor who has ordered an MRI. She thinks I have tissue damage which is causing the pain. The pain is so bad it wakes me up in the middle of the night. Hopefully, nothing is wrong but I have to wait until the results of the MRI. Just one more thing! This is what I'm talking about. I just wanted a break from everything!

Enjoy every moment!

Love,
Debbie

Tuesday, June 1, 2010

ALASKA CRUISE



Hi Everyone. Back from the cruise to Alaska. What a beautiful cruise. If you have not been on a cruise, you are missing out. Look at these pictures. It will take your breath away! Take it from me, go and make memories that take your breath away!




Mark and I Just Before We Sailed Away


Sailing out on the Ocean. Is this Heaven!!!!



The first Iceberg I saw. Look at the blue color!




Blue Iceberg!




Is This Beautiful or What? Look at all the icebergs. Look at the big glacier in the back. Took my breath away!




Can you believe how many icebergs are here?




The ship and Me. Can you guess who's bigger?




Sailing in the ocean. Look how smooth the ocean is! This picture taken from our veranah.




The Glacier at the end of Glacier Bay. Can't see too good in this picture but it is blue.


Awesome!!!!





Iceberg with a bald eagle on top.



Mark with the glacier behind him in the distance.



Me on the top deck with the icebergs in the distance. This ship was 10 stories high.




Doesn't this take your breath away!




What a beautiful day on the ocean to go whale watching. It was 75 degrees, no wind with flat ocean. In the distance, a hump back whale's tail. We saw so many whales and otters.





Ship docked in Ketchikan, Alaska. I tried to get the whole ship in the picture to show you how BIG it is. This ship is 86,000 tons with 1900 passengers. Sebourn Legend which I have cruised on to Italy, France, Spain and the Caribbean is 11,000 tons with 200 passengers. This was different being on a big ship. Holland America was wonderful and we enjoyed the cruise.




Ketchikan, Alaska's First City




Santa and Me




Sorry the picture is sideways. Couldn't get it to turn. This is the eagle at the entance of Ketchikan.



Ketchikan, Alaska


Did you know that the towns of Juneau and Skayway are land locked. You can only reach them by boat or seaplane.


I have so many more pictures to share but these are my favorites. I had a wonderful time and can't wait to go again. This was just what the doctor ordered!

Love,


Debbie