Yesterday was a long and busy day. My day started at 6:00AM driving to Santa Clara for my 8:00AM appointment for heart biopsy. As I waited for over an hour in the waiting room they finally came and said they were running late and to go to the clinic first. I went to clinic where I had an echo. The echo went well and Dr. Parak said the heart looked great. All functions were perfect. Next was the doctor's visit to go over medicines and any problems I was having. That's when things went bad.
I found out that my Lambha light chain count after the stem cell transplant did not go down but up from 190 to 215. As you know, that is the number to judge the progression of my disease, Amyloidosis. I was hoping the number would drop. So now Stanford wants me back on Decadron and Velcade again. I hate Decadron so much. It makes me feel so sore and I gain weight too. I was so depressed. It's hard staying positive when you go through a horrible experience like stem cell transplant and it doesn't work. The doctors really don't know why and can't say whether the numbers will drop as time goes on. This disease is just so mysterious. Each patient responses differently and that is why it is so hard to treat. I realize now that my life forever will be doctors, appointments, drugs, biopsy etc. I wanted complete or partial response to take a break from all this but it's not going to happen. I will keep fighting but it's getting harder each time.
Today I wait for the results of my heart biopsy. I should know by the afternoon the results and will let everyone know. I'm hoping to get good news. I could sure use it!
I look forward to the weekend when I get to go to Lake Tahoe. My neighbor friends Jeff and Christine are getting married there. All the neighbors are going and it will be so much fun. The weather will be perfect too. On Sunday, I will be meeting Evelyn, Jazmin's Mom. She is taking me to the cemetery so I can put flowers on Jazmin and Jamae's grave site for their birthday. I wish the beautiful headstone was there already but I know that the fundraiser will be successful and they will have a beautiful headstone. Oh by the way the fundraiser date will have to be changed to September sometime because Evelyn's little girls are in a wedding on the 29th of August and I want them there. So look for the future date soon. I need to check out some things before I decide on the date.
Have a wonderful day and make those moments count.
Love,
Debbie
5 comments:
Keep your head up sis, everything will work out! You just have to love this new life you have and keep making those moments that take your breath away.
Love you lots! Joey and Rachel
It was great seeing you yesterday at the support potluck. I wish I would have talked to you some more, you look great. You have such a great attitude about all this crappy medical stuff. Keep up the positivity and keep fighting. I'm very impressed by how you're dealing with this tremendously difficult situation and I look forward to seeing you next month at the support group. Best wishes, Love Matt
You are strong beautiful and we love you so much sissy. The memories you make now will be ones you will cherish forever.
I love you so much
Mary Ann
Hi Sissy,
Well all I can say is, you have made it through the BIGGEST oppstical you can ever imagine. This is all just little hurtals that you have to endore. Jazmin wants to stay alive and she wants to travel and go places she is not going to let you down. Listening to Evelyn, if Jazmin is anything like her, wow you have a firecracker inside you.
Now Sister, the weight thing, I want you to do me a favor, go in your drawer or where ever you put that golden key from Weight Watchers and get it out. Remember in 1981 when you were Bigger than you are now, and you lost all that weight? Remember.... Weight is nothing weight for you will fall off you know it. So don't stress on that. When things get better and you are on the Boat going to Italy and you are relaxing and figuring out what skinny outfit to wear. You will think back.
As for you test you are doing everything great and keeping up with what you need to do. That is most important.
You are very much and have aleways been my Inspiration.
I Love You
Me your baby sis
hi debbie...
i heard about what has been happening to you and I was just so shocked and sad... first of all, I just want to say that you are one of the most WONDERFUL people i have ever met in this world. Your presence, affection and care are what makes you stand out like a diamond in the sand.. lol really!! ummm...debbie i really miss u and i hope that i get to hug you again :) your such a sweet mom! in the meantime, i wana let u know that you are always in my prayers.. i love you very much and more power to you!!
alwaysss
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