May 5, 2016 - We are home! New plan...

I realized many of you still think we are in Houston! We are home now, and I feel an overall sense of relief about my life!

Next steps: await the mutational status of my CLL. I will then discuss with Dr. Burger, at MD Anderson, the plan of care - whether we "wait and watch" or we begin the Imbruvica/Ibrutinib tablet treatment for control of the CLL.

I have decided to no longer seek treatment at West Clinic in Memphis. My next chemo/immunotherapy appointments have been CANCELLED. [Oh, that is such a relief to even type.] I am going to make trips to Houston as needed for blood work, doctor visits, etc. We are very disappointed that I was initially advised at West Clinic to begin chemo/immunotherapy immediately, WITHOUT being told of the impending risk factors (mainly the real risk of developing other blood cancers within my lifetime that have no effective treatment!).

For anyone who may stumble on this blog in your diagnosis journey - whether its CLL or another form of cancer - hindsight is 20/20. So use my hindsight as YOUR foresight, and save yourself some heartache! Once diagnosed, seek out specialists for your type of cancer BEFORE beginning any treatment - especially for a chronic cancer (which means slow growing). Don't just see the nearest oncologist a referring doctor recommends. Get to someone who is connected to the research!

It is depressing knowing that I do have cancer and that there is no cure for CLL (yet!). This is something I will battle for the rest of my life. But luckily the good news is I am able to live a long life with CLL. We were very scared for several weeks about all those unknowns so having some clarity and being in the right hands has been life changing!

Many thanks to all my friends and family who helped me get to MD Anderson, whether by cooking food for my family, bringing us food during chemo, driving me to/from West Clinic, babysitting Jackson, and sitting with me during long doctor appointments keeping me laughing through it all. Thank you to the amazing Dr. Leah Tonkin, who I am lucky enough to call a friend, for getting all my paperwork to MD Anderson and doing the research with the best at St. Jude to get me with the best at MD Anderson. I am eternally grateful!

I will keep you posted as I continue this journey with my bad blood.