There's No Place Like Home

There's no place like home!  Boy is that true!  I'm so glad to be home finally from the hospital.  Went to the lung specialist on Monday.  I'm still sick with pneumonia and have to take it easy.  One thing that upset me so much was the lung biopsy showed amyloid in my blood tissues of the lung.  The hospital doctor told me the news and said to stop taking the meds for the pneumonia and that there was nothing they could do.  So I basically was given the death sentence.  I called Dr. Kevin Anderson immediately.  He calm me down and explained exactly what was going on.  The truth is if the doctors did biopsies on other parts of my body they would find amyloid everywhere.  Our bodies have amyloid every where in the blood tissue.  The doctor lead me to believe that the amyloid is what caused the infection in my lungs.  On Monday I met with the lung doctor and she said no that it is pneumonia.  Yes I have amyloid in the blood tissue of the lungs but that is not what caused me to be admitted to the hospital.  My oxygen saturation is still low at 88 but they all feel once I have cleared my lungs of the pneumonia that will go up to normal range in the 90s.  I'm so glad to be off the oxygen.  What a pain that is.  I couldn't go anywhere for more that 3 hours and at home I was on a leash (tubing) all through the house.

So I had a 3 week break from Decadron and this week was my first time back on.  To be honest I have not been sick or sore this time.  What is that all about?  Next week I am going to take my break from Decadron.  I will continue with my normal treatment of Valcade every week, Decadron every other week and Cytoxan once a month 300mg for 5 days.  I will do this until Stanford contacts me with a new treatment plan because of the recent discovery of the amyloid in the lungs.  I don't really think Dr. Schrier will change the treatment because my numbers are low at 70.  But we will see.

Saturday is my little grand daughter, Hailey's 1 year birthday.  We are having a big birthday party for her on Saturday.  Sunday everyone is coming over to decorate the gingerbread houses I have made.  I made 7 little ones (Markie, Hailey, Angelina, Ashanti, Amelia, Cashious, Riven and two big ones for me and Nancie.  Sunday is gingerbread decorating day with the kids.  I'm so excited.  I have done this for so many years and don't want to break the tradition.  It means so much to me and I'm going to enjoy every moment.

First time ever Mark and I are getting a fake Christmas tree.  I'm tired of the mess and the problem with lights burning out and the cost.  For $50-$75 you can get a 6.5 foot tree with the lights already on and the stand.  So tonight we are off to look for a bargain fake Christmas tree.

Maxwell will be home for Christmas and I'm so happy.  I haven't seen him since I visited him in San Diego in October.  He is doing so great!  Going to school and has a great job.  Mark and I are so very proud of him.

Please include in your prayers Auntie Mary Joan.  She is really sick and Hospice has been called in.  I don't want her to suffer anymore.  She is truly an angel and I love her so very much.  Also, please include in your prayers my dear friend Judy from Virginia who is suffering with Amyloidosis.  She finally after 7 years waiting for a kidney transplant found a match donor only to find out that the disease has spread and the transplant was cancelled for tomorrow.  She is very sick and needs the transplant ASAP.  Please pray for both of them and all who suffer from terrible life threating diseases.  Be grateful everyday for your health.  Money, jobs, things do not make you healthy or happy.  Enjoy every moment you have on this earth.  Life is so precious!

Love,
Debbie