How fitting it was for me to have met with a Hemo/Oncologist for the first time yesterday, World Cancer Day? Eerily so.
Daddy rushed home from his business meeting in New York City to meet me at Drexel University Hahnemann Hospital. Walking through the front door felt a bit like “coming home”. Just before Christmas I spent a week living on the 14th floor of the same building. In the neurology unit, under the care of Dr. Terri Heiman-Patterson, I received five days of IVIG infusions. Dr. Heiman-Patterson is the section chief of neuromuscular disorders at Drexel University College of Medicine. She is also the medical director of the MDA/ALS Center of Hope at Drexel University College of Medicine, and co-founder and president of the board of the ALS Hope Foundation. She ordered IVIG in hopes of quieting down my autoimmunity and alleviating my symptoms. I have a great deal of respect and admiration for Dr. H-P. She is a deeply thoughtful physician, wholeheartedly devoted to the good of each and every one of her patients. She goes above and beyond her role as a clinician, often aiding patients in her ALS clinic, with things such as securing affordable housing or fighting for proper health insurance coverage. Dr. H-P is a hero in nearly every life she touches.
My appointment yesterday with Dr. Michael Styler was set-up at her suggestion and referral. We were quite impressed with my newest doctor and left his office with more hope than fear, which has become a rare occasion. Realizing I have failed more customary autoimmune therapies, i.e. plasmapheresis, IVIG, and various medications, he discussed the option of trying a chemotherapeutic drug. This has been a topic that we have danced around for awhile, but it seems as if we will formally pursue this modality in the near future.
As I agonize over the choices placed in front of me, it is my family and friends that continue to offer me consolation. A close friend jokingly teased, “I wish you could Google ‘What to say to Francie’.” Despite the fact he couldn’t find guidance for the perfect thing to say on wikihow.com he managed to come up with something to successfully ease my mind. “Don’t be afraid. Be as informed as possible and make the best decision you can. That’s all you can do.” He said, “Just remember, there is no right choice, just a good one.”
I also received valuable wisdom from a dear friend sitting at my kitchen table this afternoon. Margie and my mom have been the best of friends for as long as I can remember, and boy am I thankful for that! I have always loved when Margie would grace us with her presence. Her unique philosophies are more appealing to me than ever, as she exudes nothing but positivity. She shared with me her favorite quote, “God’s WILL won’t lead you where his GRACE won’t protect you.”
With her permission I’m pleased to pass on a few more of my favorite Margie-isms:
“Everyone is a friend until proven otherwise.”
“There’s no such thing as a stranger!”
“I think it would be a better world if we were taught to think with our heart and feel with our head.”