Dear Friends —
I’m here to report that Phoenix’s Sky Harbor is actually quite lovely. I remember flying in and out of Phoenix many years ago, and back then the airport was sort of desert meh — chaotic baggage claim areas and drab exteriors. I remember I once saw a tumbleweed ball bounce around taxi cabs in the oppressive desert sun and wondered why in the world did anyone think this would be a smart place for civilization to build a large metropolis.
But today Sky Harbor is having a moment. Beautiful stores, restaurants, curated art on display, clean bathrooms, short security lines. I noticed it all because just days ago I learned that Sky Harbor Airport and I are going to become dear friends for many months to come, and I wanted to size up this new bestie. I think she and I will get along famously.
Here is the latest. When I last posted I chronicled a rather wild and winding tale that connected me to the Ever Smart Dr. S in Scottsdale, who said breakthroughs in immunotherapy were now in motion, and — if I hustled — I might be able to get into a promising trial featuring immunotherapy drugs ideal for me.
A word here on hustling and cancer. For patients like me — feeling basically fine, but who’ve reached the end of the line on chemo, and who are now ready to step into cutting edge approaches — hustling is everything. There is no CUTTING EDGE HQ a patient can call to sort out which breakthrough is best. Instead patients study trial data on their own, usually late at night, and then compare notes with other patients. If you’re very fortunate, a patient can tap into a powerful network to help shove open a door or two to hear from the top experts to learn more about the best path to explore. And then if you’re even more fortunate, a patient can hop onto planes for hastily arranged appointments with top experts.
I’m ridiculously fortunate. And this is complicated, because the more I discover about hustling and connections, the more mindful I am that the vast majority of cancer patients are doing the very best they can, but they don’t have the kind of network or flexibility that I have. Complicated is one word for this; a more accurate word is crushing. My friends who work to lower barriers to quality health care have dedicated their lives to create a world where medical excellence is available to all. Their determination eases that crush.
I started last week with an early morning flight to Phoenix to begin the administrative steps to enter into the trial that Dr S is running in Scottsdale, and then returned the next morning for a physical evaluation and lab work. Later that afternoon I flew to Houston for a meeting with the world’s top expert on colon cancer trials at MD Anderson — Dr K(3). Even though there is no CUTTING EDGE HQ for the millions of patients needing expert advice, there is Dr. K(3). And he happens to be brilliant.
My appointment was Wednesday morning — my fabulous friend Tiffany joined me for this leg of the relay. We listened carefully as Dr. K(3) walked us through the particularities of my biomarkers and genetic clues, plus how the breakthroughs in immunotherapy and cellular therapies hold such important promise.
I learned that my cancer cells are smarter than most, which is why traditional chemo is no longer a card for me to play — essentially my rogue cells are now playing chess while chemo plays checkers. But Dr K(3) is a chess grandmaster when it comes to cancer, so he gave me extraordinary counsel on navigating the often confusing world of immunotherapy. The upshot? He agreed with Dr S that the Phase II immunotherapy trial underway in Scottsdale and many other locations is a strong fit, and I needed to hustle to get going.
Hours later I bid Tiffany adieu and climbed onto a flight back to Sky Harbor, praying I would hear from the trial coordinators that I had been accepted. An email arrived as the plane was boarding with this remarkable news: You’ve been accepted into the Agenus trial, and you’ve been randomized into the A group. We’ll see you Friday for your first treatment!
I landed in Phoenix and walked through Sky Harbor with a bit more confidence compared to two days prior, knowing that this airport and I would now be having a weekly date for at least 24 weeks to come.
Friday morning a new chapter of my story began. My brother dropped me off at the medical clinic and I met my new nursing crew, a fabulous bunch who hustled like crazy for me over several days to make sure all of my paperwork processed quickly, and who maneuvered scheduling to make sure I could receive treatment within a tight window.
I settled in, marveled at the liquid drug hanging over me, and only then asked the question probably all of you have been wondering all along — how does immunotherapy work, and will it be like chemo? The short answer here is twofold: immunotherapy is vastly different from chemo, and we are learning in real time how the drug behaves with respect to efficacy and side effects. Which is to say, welcome to the world of discovery.
The Phase I folks from this trial offer us a few clues. Many of them reported low grade fatigue and a little nausea. Some struggled mightily with lousy digestive issues. Some said it was all easy peasy without much hassle.
As a Phase II patient, my job will be to pay special attention to how I feel while on the drug (this weekend I had a little fever, chills, and aches, but nothing too awful). Then those observations will be added to hundreds and eventually thousands of others, and someday that data will roll up to a more comprehensive playbook for a patient in 2032 who will be told about a heartbreaking colon cancer diagnosis. In that same conversation she’ll hear about miraculous immunotherapy drugs now approved and ready for her.
She will be fortunate on that day, as will millions of others. We hope.
Until that day, my invitation is to receive my miraculous fortune, find ways to hustle like crazy for other patients who may not have the sparkly network that I have, and know that my participation in this trial is adding an important plot detail into a far more expansive story of healing. That healing might include my own health, or it might provide a key insight that will result in a breakthrough for that patient in 2032, who will hug her kiddos tight with a beaming smile, knowing she is the recipient of her own miracle.
When I looked up at the drug dripping into my veins, I knew more than ever that I am part of a beautiful endeavor. Decades ago, brave patients entered into a trial to see if Foxy would work — they were randomized into different groups, with different dosages, and they logged notes about side effects. Their hustle, their connections, and their fortune eventually became a gift for millions. I have been one of them.
And now it’s my turn to set a new story — and maybe a new drug — in motion. I am gratefully in the A group, and I will no doubt soon be an A Lister on Southwest Airlines as my Grand Sky Harbor Weekly Swoop begins in earnest.
Let’s go.
xoxo
Amy, you are amazing. I love your attitude as you go through this amazing trial and yes it is a privilege to be chosen to accept this trial. You’re in my prayers and I hope to see the ultimate victory with you. Love you.
So much to take in here… Lots of wow, that’s incredible…. I love your perspective on paving the way for others as it has been paved for you. Praying for lots of travel mercies! ❤️