Andrea Bozzi's Journal
What a difference a year makes
Written Jul 15, 2013 4:30pm by Andrea BozziAll, Despite knowing better, I went back to the past. What a year. Last year this time I was heading south. God had different plans for me and here I am still fighting the beast.
I am currently waiting for my counts to recover, so I can get another round of chemo -woohoo.
I will have two more rounds before having another biopsy. The hope is the biopsy will be PCR negative.
The side effects of my medication can be bad. I now have foot and hand syndrome. Constant tingling in hands and feet and severe heat sensitivity. I think I am getting something new to help. My appetite is terrible, but it has done wonders for my waistline. My legs are like pencil sticks. I assume one day, I will have an appetite and be able to enjoy a glass of wine. Until then, enjoy food for me and toast me while you are out. I long to go out, but the white blood counts control my life for now. I have a cold that seems to be lasting forever.
Overall, I am ok. I will be heading on vacation very soon. I am excited. I willowy the pictures. I did finally color my hair, not much I can do with the curly locks though. So, if you see some lady walking on the beach, completely covered, with a hat -it's me!!
be well. Peace.
CLEAN BIOPSY !
Written Jun 21, 2013 6:06pm by Andrea BozziI am elated. I rec'd a phone call from HUP( Hospital of the University of Penna), my research group and was told my marrow is completely clean. They found 0 blasts. My ITD (mutation) is negligible. I will not be going into a clinical trial, but will instead stay the course with the inhibitor and a few more rounds of outpatient chemo. The downside to chemo is low blood counts, but that is nothing new for me and now I know the signs and symptoms. This is the best news I could have gotten on the anniversary of my diagnosis. My husband said, we give up 12 months for 400 more! Though I will still have treatments and I know things are not carved in stone, I can breathe.
To my physicians and nurses - God Bless you all! To everyone saying prayers, thank you! God has a plan for me and the paved road will become clearer each day.
Peace and love forevermore,
Day 166 -moving forward
Written Jun 18, 2013 6:32am by Andrea BozziHi all,
This week marks my one year anniversary of fighting leukemia. Part of me says don't celebrate that awful day and the other side of me looks and.screams "You're a Survivor" for one year. I am wearing my survivor bracelet that Diane and Milton sent me. I have kept it on top of my jewelry case for months and read that word, "survivor". So many have not had the same opportunity and good fortune to keep going.
I feel good most days. I follow up weekly with the bone marrow group. I did have one test come back as positive for probable relapse, but so far, no leukemia blast. However, I am being given chemotherapy and treatments as if I did relapse. The goal is to stay one step ahead of this genetic mutation and pretty much 'slap it back' should it try to turn on. Much of the treatment is accidental, used for something else and then found to inhibit FLT3. A friend and fellow warrior in New York is on another clinical trial at Cornell for Plexxicon3397. Penn is trying to see if I qualify, so I had another bone marrow biopsy (19 in one year) yesterday. If I qualify great, if not great (it means current treatment is working).The good news is that there are options and since I am not in a time sensitive danger zone, there is time to really think through options and tailor my treatment plan.
It is wonderful having the advantage of Penn in my backyard. Their research ability and access to clinical trials allows me to be on the cutting edge. They have the ability to have a specialty within a specialty and I am thankful for their expertise and guidance.
I thank God every day for your thoughts and prayers. Peace, love & hope always,