Upon Googling, I find the solution to treating saddle sores is first and foremost to reduce the friction. From there it sounds as if limiting the bobbing and swing motion will also help. So, we are in full swing attempting to do all three. Unfortunately, my last trip to Los Angeles, suddenly pitched me (us) back in the saddle in a big way. A series of scans showed multiple new masses and confirmed that I have relapsed. I swiftly lost my spot on trial and was sent galloping away without any fanny-padded jodhpurs to be had. With that, we are doing all we can to quickly get right side up after feeling as if we were hanging from the belly of said galloping 16 hand wild horse.
With this change, I am no longer being seen at Angeles Clinic and have returned to the care of CPMC, aka “Dr. Minor’s office”, where Dr. Minor retired and Dr. Kim has taken over his practice. Thankfully, within 24 hours of our news, our amazing team of medical resources (including Dr. Minor) had weighed in from around the country with a plan of attack. All acknowledge that we are in new territory, with no cutting edge single agent option sitting on the horizon for us to latch on to. However, they believe that there are creative ways to pair the many of the new therapies that have come to market in recent years in order to gain stability. We are so grateful to have a plan in works to hopefully still the bobbing and swing motion of our ride.
As it stands right now, David and I are sitting in Houston airport after a two-day dog and pony show at MD Anderson. We are considering the TIL (tumor infiltrating lymphocyte) process, which is a bit like a bone marrow transplant monster truck style, and is only available at a couple of sites worldwide. While pioneered at NCI (National Cancer Institute), the program at MDAis very well established, more flexible, and run by doctors that came from NCI. This protocol involves tumor removal; a laboratory process that isolates and expands T cells from your tumor (cells that work in immune response), and then reinfusion of your T cells after many rounds of inpatient chemo. This is followed with high dose Interleukin-2 (IL-2) as a growth factor to rev it all up with that goal that these expanded TIL will home into and attack tumors. This all falls in a powerful form of cellular therapy for cancer called “Adoptive T-cell Therapy” (ACT) and translates to shacking up in Texas for a month if we decide to take that trail.
The process is by no means a simple solution as there are a formidable host of variables that can knock you off course at any point. We have cleared jump #1: Acceptance for Screening. This hurdle includes one’s ability to function at a high administrative level and deliver reams of historical reports (12 years worth) on very short notice, followed by jumping on a plane and flying to Texas on same said short notice. Upon landing, a slew of tests and having a tumor that the surgeon deems worthy complete screening. Thursday was test/screening day, which translated to 9 hours in the MD Anderson Cancer Center where we are pretty sure one could complete an entire marathon worth of mileage, no problem. The place –included multiple eateries, a hotel, hair salons, post office, the most efficient, tech driven valet parking set up I have ever seen and 6 different elevator towers—truly an indoor city that requires a map to navigate.
On our Texas trek, we also traversed jump #2: Tumor Harvest (sounds so California farm to table! but translates to surgery). I had surgery yesterday (Friday) morning to remove enough tumor mass from my quad muscle to “pass go”. The surgery went well, I spent the day in the very spanky efficient MD Anderson surgery center where the moment I began to wake anesthesia—I mean really, one eye barely fluttering, the view from it a blurry roomscape---they had me out of bed and walking down the hall with a walker and a bare Texas moon—not a pretty sight at all! No messin’ around here in Texas. We were back in our hotel by eve and had a good night complete take out Texas bbq and a Shiner Bock. And now, after whirlwind trip where we barely breathed any Texas air in daylight hours, we are sitting at the Houston airport ready to high tail it back to Cali. Not very excited about the prospect of flying right now but looking forward to being home.
Next on this crazy trail ride, jump #3: Growing TIL. This is a 6-week laboratory process with a 50% success rate (if you need somewhere to throw some energy, this is a good spot----chant, pray, sing, wish on a star--- “grow TIL grow”). If my TIL grows, it will be multiplied to millions of cells and then frozen so that it can be held until I need it. While MD Anderson is working to get my TIL to grow, I am going to start on a combination of treatments at CPMC based on my genetics and immunotherapy agents. If these treatments work, I will stay on them as long as possible (another place to throw some healing energy). If they do not work In the next couple of months, and the TIL grows, providing I still meet the criteria to continue on TIL treatment: strong physically and no brain mets (another place you are welcome to invoke any and all powers you have!---clear brain!!),I will go ahead with jump # 4: TIL treatment. While this treatment is grueling, it does hold the potential for durable remission and kicking this cancer’s ass out of town.
Needless to say, this return to the saddle has hit us all hard. Thankfully David has been able to take a bit of time off work (thank you Suzanne & Chambers crew) -- this has allowed us to hatch a plan, get our feet under us and quickly move forward. He has been incredible ---a true rodeo champ, theme given, and I am so grateful to have such an amazing partner in this. As always, Calem and Emilia are the hardest part of this for me---being the cause of the angst and fear they hold and not being able to make it go away is torturous. But, we are taking it one step at a time, building strong support systems for them and laughing as much as we can together as we go (making fun of mom is not off the table and generally leads to serious belly laughs)—good stuff. I can only imagine what coming home with a walker and compression tights will translate too. Eee gads! So, all said, saddle sores aside, we are doing well. We all have full plates, lots to do right now, and intend to do everything we can to keep it “normal” and keep doing those things. The rhythm and purpose is important to all of us.
We continue to be blessed by the most incredible medical team, who are willing to reply immediately, and help open doors to keep the pace. This is a true gift. While the next couple of weeks will surely be bumpy with new treatments to navigate, one day at a time, we will head through it. We will be back in Napa tonight and will begin the process of figuring out what we need to keep it all rolling. My driving is a bit limited so rides home from school/practices will certainly be helpful and I am sure more items will pop up, so stay tuned. My apologies that we have been slow to get the word out but this has been a very sudden, unexpected situation that has taken every moment of our time and energy to get headed quickly in the right direction. Giant thanks to Grandma M. for dropping it all and heading up to Napa to helm Camp Kaywoodie while we hit the road. And much gratitude to those-of you that have jumped in to hold us up in recent days—we love you and are so grateful to have you in our lives.
Saddled up, spurs on, here we go---planning to hog tie this beast and ride on!