The Good, The Bad, And The Not So Ugly

While traveling down this road full of pitfalls and glorious heights you learn a lot. Like how to bite your tongue when you want to scream. Or suggesting that everything is a-ok when you really don’t know. Or offering hope to someone else when you’re having a difficult time finding it yourself. Then for the umpteenth time, coming full circle to: no matter what, I still win! You find that you never knew you could dig so deep within yourself discovering who you truly are. Discovering what is actually important to you, not to everyone else…to you. Discovering that everything you ever wanted you actually already have, have had it all along. 

Let me recap the past few weeks.  Two weeks ago, I went to Dallas to share my story with about 200 conference attendees at Foundation Medicine’s (FMI) fall meeting .  These passionate folks are committed to making sure that genomic sequencing testing gets to everyone who needs it while helping advance the science of cancer care.

( https://www.foundationmedicine.com) 

You’ve heard me talk about this before, my commitment and belief that everyone diagnosed with cancer should get Comprehensive Genomic Sequencing testing.  It’s the only way to know what is driving a patient’s cancer and assure that the patient and their doctors have the information needed to access the best medical options available. 

I was treated like a rock star even though I never sang a note. Jen, Sharon, Maggie and a host of others, attended to my every need while making me feel welcome and appreciated.  I experienced the excitement of being on stage again, telling my story and confirming that FMI is making a difference in peoples lives, including mine. Sharing coffee and danish with FMI’s CEO, Cindy Perettie, was a definite highlight. FMI is definitely in good hands with this woman at the helm in my humble opinion.  It was a wonderful few days and I am incredibly grateful to have had this experience and opportunity. 

I returned on September 13, Monday the 16th I had scans and the next day Jim and I met with Dr. Narayanan, aka; Super Ninja Most Wonderful Oncologist (SNMWO). The PET/CT showed that the nodule we were watching grew and there are new mini spots lighting up in my peritoneal cavity, that’s the bad news.  Here’s the good news, that’s the only place we are seeing it. 

So where do we go from here? I was hoping that an EGFR/PanHer trial we’ve been following would be available but it’s not open yet and the biopsy tissue I donated in June to grow a live cell line wasn’t successful, there weren’t enough cancer cells. SNMWO suggested another chemotherapy we haven’t tried yet or Immunotherapy. He also suggested reaching out to the University of Colorado Cancer Center about a clinical trial and this is the direction we decided to pursue.  Kaiser approved the referral earlier this week and I’ll be seeing Dr. Camidge on October 8 for a consult.

Waiting, watching, wondering. That’s what I’m doing right now. If I am eligible for one of UCHealth’s clinical trials, I’ll be switching over my treatment location and meeting a new team. I have mixed emotions about not being under the consistent and watchful eye of Dr. Narayanan. While I know he will be keeping tabs and will always be my number one go to, it feels like losing a friend, a partner, my gifted and trusted doctor and the quarterback of my team. How can anyone else possibly fill the size 20 shoes I have put him in? My expectation is that the mentor will live up to the brilliance and caring of his student, for you see, my SNMWO was once a Fellow* to this highly respected lung cancer specialist. Having already met Dr. Camidge is a plus, he was my second opinion doc and I have run into him at events and requested his expertise over the past three years. I know I would be in excellent hands but keeping it real while sharing with you the inner workings of my mind, as it relates to the realities of my world, is therapy for me and one of the reasons I write and bake cookies.

Have I told you lately how much I appreciate you, your prayers, support and love?

Stupid crazy cancer.

*A Fellowship is the period of medical training, in the United States and Canada, that a physician, dentist, or veterinarian may undertake after completing a specialty training program (residency). During this time (usually more than one year), the physician is known as a Fellow. Fellows are capable of acting as an Attending Physician or a Consultant Physician in the generalist field in which they were trained, such as Internal Medicine or Pediatrics. After completing a Fellowship in the relevant sub-specialty, the Physician is permitted to practice without direct supervision by other physicians in that sub-specialty, such as Cardiology or Oncology. WikipediA