“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
Starting early for today's visits for research labs, my baseline bone marrow aspirate, and meeting with the trial NP to acquire my medications for the next 28 days.
Right when I had switched back to long term thinking, I need to return to more of a day by day outlook. What is healing anyway? An acceptance that you've been through the thing and made it, and now you could go through the thing again, and in theory, you'll make it again?
I'm more afraid of leaving my parents without a child than I am to lose my life. But being prepared to lose gives me a special edge on wanting to win. It's the drive that keeps me pushing to pursue the latest and greatest to try to prevent the future risk of recurrence in early breast cancer. For me, and for those after me.
My mom had a great idea to get away to the beach today. We went to Atlantic City and Margate City, NJ.
I learned that Lucy the Elephant is a big deal. She is a 65-foot-tall, six-story, elephant-shaped architectural landmark in Margate City, New Jersey, and the oldest surviving roadside tourist attraction in America.
It was much less crowded at the beaches in Margate City.
We ended our day at a beachfront dinner at Landshark Bar and Grill, right next to the Ferris wheel.
It's amazing what a good nights sleep can do for you. I woke up ready to logisticise. Like jazzercise but much less __________ (fill in the blank):
I will need to return to Philadelphia every 28 days as 28 days = 1 cycle for this treatment. After looking at dates and factoring in flights and family visits, which is part of the reason I chose to do this study in the first place, I think we can make this happen.
I mean, every single one of you, who are here to support me. I appreciate it more than you can know. I didn't plan for this. I didn't plan for any of this. And being a planner, that can make you go crazy. But I have found peace in understanding why everything doesn't have to be planned and that I have the skills and support to make it happen. So thank you for being here with me through it all.
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!
