“Choosing to have joy is not naively thinking everything will be easy. It is courageously believing that there is still hope, even when things get hard.” – Morgan Harper Nichols
You would think I would have learned this lesson by now, but apparently I have not. I was tossed a major curve ball when meeting with the ABBY clinical team today. First the clinical trial research coordinator and Fellow (student doctor) came in. The clinical trial research coordinator asked me if I had any questions which was fair. I asked my prepared questions and we continued. Next the Fellow asked me what I knew about the trial. Having read the consent and all other materials sent, I sat, with tall shoulders and a proud chest, and with all my confidence, told her what I knew.
She then looked at me and said, "Are you aware you have to come back to Philadelphia every month for in in-person evaluation and to get your medications for this trial?"
Meet Fear
And then sadness. I literally started to bawl. There I was, frantically text messaging my husband and sister, asking if we can even make this happen. My mom was sitting right beside me, but I couldn't verbalize my question to her. I was so overwhelmed.
Inside my brain, I started to get mad. Here I am, traveling the whole way from Alaska, and NO ONE thought to tell me that the requirement was for traveling back and forth once a month? Does that sound like a normal thing people do, even in the world of clinical trials?
I quickly asked if this was in the consent. The clinical trial research coordinator and I spent a few minutes reviewing and agreed that this was not explicitly written.
Now does that change my situation? No. But if they update it before enrolling others, maybe they can come in with two eyes wide open.
My adult self had to quickly snap back out of emotional mode and make a decision. Do I continue on with this trial or not?
I didn't go through two bone marrow aspirates and find out I have DTCs, which increases my risk by 30%, just to do nothing. So I went on with the consent visit and labs today, and plan to proceed with Thursday's appointments which is when I will receive my trial medications.
There's nothing like staying up for 21 hours and changing 3 time zones. 14 hours of sleep and a shower later, today was a good day.
We ventured to the Philadelphia Zoo and spent the beautiful day wandering around the animals. Something that is a little more intentional these days is recognizing a good day. The sun was shining, the weather was warm, but not hot, and...
Tomorrow afternoon, I will meet with the principal investigator of the ABBY trial, Dr. Amy Clark, to establish care, sign my consent to participate, and get pre-study labs completed.
ABBY is a Stage II clinical trial:
I will be randomized into one of these groups and will know which one on Thursday:
Today is my packing day in preparation of heading to the airport this evening. It wasn't until today that I could mentally prepare for this trip. I find myself much more relaxed in anticipation of a flight. I'll pack what I pack and I'll make my flight. No more amping up and worrying about flying.
I found this emotions wheel from BEAM, and loved the messiness of it. It's not just this perfect circle with perfect colors. It's alive.
I've decided I feel in colors. My Dad always taught us to have the right word for what we were saying. We call him the walking thesaurus. Moments like this should have one right word, but they don't. So right now I am: a rainbow. I can literally pick out words from each color in that perfectly, imperfect emotions wheel.
The most common question I've received with these new findings is, "Is this a good thing or a bad thing?"
My most succinct answer is: It's both. It's why I did this (SURMOUNT) clinical trial. I'm catching potential future cancer cells before they have a chance to attach to an organ and become metastatic if the study (ABBY) medication(s) work as intended. It's bad that I have them though as it greatly increases my risk of metastatic cancer if we can't kill them with these study (ABBY) medication(s). Makes my approach proactive and not just reactive. The current practice without clinical trials is waiting to treat it until it has metastasized.
The words I've used to some is "scientifically inevitable". Let us remember I have triple positive breast cancer which is HER2+ and HR+ and I had a residual cancer burden (or not a pathologic completed response) after chemotherapy prior to surgery (neoadjuvant).
Let us consider:
First 5 Years:HER2-positive (HER2+) recurrences most commonly appear within the first five years, often peaking around 20 months to 3 years after diagnosis.
Beyond 5 Years: Because of the hormone receptor-positive (HR+) component, patients carry a steady, persistent long-term risk of late recurrence that can extend past 5 to 10 years post-surgery.
Other Risk Factors:
Tumor Burden: Larger primary tumor size and residual cancer burden remaining after initial treatment increase risk.
Pathologic Response: Not achieving a pathologic complete response (pCR) after neoadjuvant (pre-surgery) treatment elevates recurrence potential.
Other Considerations:
Site of recurrence: If it returns as metastatic (distant) disease, HER2-positive (HER2+) cancer has a higher tendency to recur in the brain compared to some other subtypes.
Let us remember, this is why I chose to enter these clinical trials, so others may live.
So back to how does it feel? It feels like I'm ready to hit this shit with all I've got. The fact that both UPenn clinical trial teams (SURMOUNT and ABBY) contacted me so quickly after the results to get started really shows me we're on top of this. The continued support I continue to have from everyone is so very appreciated.
The feeling I have is like a rugby scrum and we're the All Blacks (cancer is yellow):
I realized I never posted about the end of our trip to Philadelphia. We were able to take some time to explore our nations history at Valley Forge and exploring the Independence National Park area. We made it home in one piece.
This void was due to a time of waiting, a time of pause. But when I got my call from my SURMOUNT clinical trial investigator on August 26th with the results of my bone marrow aspirate, we were quickly launched back in to go mode.
This bone marrow aspirate showed 1 disseminated tumor cell in 10 slides and was confirmed by a second pathologist to prevent false positive. As posted in the past, bone marrow aspirates for this purpose began with a 40% chance of false negative, so finding a confirmed positive disseminated tumor cell on the 2nd bone marrow aspirate was, in a way, lucky.
I received a call within 1 hour of my results from the SURMOUNT Trial to enroll in the ABBY Trial. They requested that I return to Philadelphia as of September 8th to start the consent and lab draws and remain there until September 10th to obtain a baseline bone marrow aspirate and complete randomization to see which arm of the trial I will have for treatment.
Arm A is treatment with Verzenio alone
Arm B is treatment with Verzenio plus Hydroxychloroquine
I will find out which Arm I am enrolled in as of September 10, 2026.
I will be much more active on my blog again as I continue to navigate my treatment to prevent cancer from coming back!
Another early morning to drive the 472 miles from Ohio back to the Philly area. Taking the PA turnpike which is apparently ~$100 from west to east now?!
We plan to take a little time for ourselves and explore the Valley Forge Historical Park before heading back to the hotel, crashing, and getting up early to get into Philly for my Bone Marrow Aspirate tomorrow morning. We’re hoping to pack in Independence Hall to see the Liberty Bell and the Constitution after my BMA and before our flight but we’ll see.
We had a great visit with my parents and puppy, Oley. We had some fantastic thunderstorms and watched an even more fantastic FIFA World Cup 3rd place match. A great visit, all in all.
We’re now headed the 207 miles to visit Steve’s family. A few days there before heading back East to my Bone Marrow Aspirate procedure for my SURMOUNT clinical trial.
I mentioned MyChart in my last post and it still did not disappoint. I received timely results for all of my labs, CT Scans, and Nuclear Bone Scan (correction from PET Scan). I thought it was a PET Scan, but it was clarified it was strictly a Nuclear Bone Scan that uses 1/3 the nuclear isotope and is more specific to finding bone metastases.
Findings: NO METASTATIC DISEASE FOUND!!!!
This gives me the green light to proceed with the SURMOUNT Clinical Trial and if all goes well, I will never have to do the ABBY Clinical Trial. I will have a Bone Marrow Aspirate every 6 months for 3.5 years as long as no disseminated tumor cells are found in my bone marrow. That’s best case scenario!
Grateful for a sunny day with less wildfire smoke!
Today is a marathon day. After a great sleep at a hotel outside of the city, we’re headed into Philadelphia University City to the University of Pennsylvania Perelman Center for Advanced Medicine for all of my tests.
Before leaving, I couldn’t help but giggle at the continued, and unexpected, continuation of my shark theme. This was the shower set at our hotel:
Now for the traffic report. We planned an early morning to get on the road and avoid as much traffic as possible. To put this in perspective, there are 738,700 people in ALL of Alaska. That’s just 1.3 person per square mile, just the way we like it. Now we’re on the road with the population of Philadelphia, 1.57 million, expand that to the surrounding areas, where we stayed, it expands to 6.33 million. Now add in the FIFA World Cup international visitors for the final game in just 2 days and we’re swimming in people. So far, my driver (my husband), has been doing a phenomenal job ducking and weaving through the lanes. I finally caved and got Waze (thanks Mom) which has been a tremendous help in finding the best route and knowing any upcoming hazards.
Today’s itinerary with a big shout out to MyChart by Epic, which makes it so easy to plan a day of appointments, even from 4,290 miles away:
