When time bends
Living in the in-between
In September, I posted an update about The Collector’s Compass. Since then, my dad was hospitalized again in October and, more recently, three times this year, though each stay lasted only a few days instead of double-digit stretches. For a time, he was simultaneously a patient at the Memorial Sloan Kettering Cancer Center, the Dana-Farber Cancer Institute, and the Ruttenberg Treatment Center at Mount Sinai Hospital.
Looking back, the second half of my 2025 was largely spent learning about terms such as neutropenic fever, splenomegaly, and extramedullary hematopoiesis. I spent way too much time looking at blood test results (that were mostly done twice a week) and dedicated even more time trying to understand what might come next. It might sound obvious, but it’s complex and challenging to assess ongoing cancer risk. During this time, only one doctor has ever said to us, “we don’t know,” although I suspect others would have agreed.
One of the challenges about a loved one going through cancer treatment is that it bends time for everyone involved. It forces a shared confrontation with mortality and uncertainty. And for all the support we can give, none of us truly understands what the patient is going through because he’s the one actually living it. My dad has a rare cancer called myelofibrosis. In late August, after his first cycle of chemotherapy, his blast levels, i.e., the detectable cancer cells in his blood, were 32%. Anything over 20% is considered leukemia. Normal is effectively zero.
The week before Thanksgiving, we sought a second opinion, and then a second, second opinion after we couldn’t reach consensus with his then-oncology care team on how to proceed with treatment following three cycles of chemotherapy. That delay bought him some time and, thankfully, he has been in remission since then. After a transfer of service in the final weeks of 2025, my dad completed a modified fourth cycle of chemotherapy in an effort to keep him stable and the disease under control. This ongoing treatment has not come without cost. Since late November, he has received 16 blood transfusions (units of PRBCs).
All of these efforts were in the hope of my dad receiving a bone marrow transplant. It would have been yet another irreversible decision in a series of high-stakes choices that we’ve had to make as a family for the better part of a year. In short, it was the only potential pathway to a cure. We had a donor lined up—an amazing, selfless person from the greater Philadelphia region—and had a date set for the transplant. And then a week before the transplant was supposed to happen, we received confirmation that the mass that had been detected in his liver earlier in the month was, in fact, Hepatocellular Carcinoma (HCC): a second malignancy and yet another new term to learn.
This was devastating news and we are in the middle of implementing a new plan together with his multi-disciplinary care team. Despite this period of ambiguity, I have familiarity with slow-moving, ongoing family crises from another chapter in my life. You can only take one day at a time, the only way forward is through, and no one is going to advocate for you or your loved one more than you or your loved one. And as a kind neighbor shared with me recently, sometimes you can only take one hour at a time, or even a minute at a time. It also requires ruthless prioritization to distill what is important from what is a distraction.
You can never be fully prepared for how uncertain these moments can feel, no matter how hard you try. I’m also drawing from my own lived experience in that area. This means that most of my time in the coming weeks and months will be spent planning, coordinating, and being present in person. It will be an extraordinary time for me and my family.
While I will try to be as active as possible on Instagram (primarily by surfacing and re-sharing interesting content), I’m not sure how often I’ll be able to publish here on Substack. I have several articles in progress and a few already prepared, which will continue to publish in the near term. Beyond that, my ability to attend events or conduct interviews may be limited for a while.
For now, I appreciate the support that my family and I have received, whether it’s understanding, prayers, or advice from those of you who have gone through your own caregiving challenges. For that, I am grateful.
These next few months will be measured differently. Thank you for reading, and for your continued support.
Andrew
Founder, The Collector’s Compass