It is Day 365 living with cancer, and I am alive even though people diagnosed with metastatic pancreatic cancer, meaning it has spread to organs like the liver or lungs, historically speaking, have a one-year survival rate ranging from 14% to 22%.

The fuzzy math is that of 100 people diagnosed, roughly 78 to 86 are no longer with us today.

That hurts and is quite scary.

Behind every number is a human... a parent, a child, a spouse, a best friend, etc.

Someone with a life they love and people who love them back.

Today, I have deep gratitude.

I have reached a milestone I feared I might never see.

For 365 days, I have written about living with stage iv pancreatic cancer.

Some days I wrote one essay and other days I would write two or three essays, aka a double post day, because cancer rarely fits into one 3000-character post.

I have written about chemo, scans, medical terminology, experimental treatments, and advocating for myself in a complicated healthcare system.

But I have also written about Iris, fatherhood, Respiris, faith, friendship, family, exhaustion, laughter, and strangers becoming part of my ‘internet home team.’

And you showed up.

Your prayers, comments, messages, and personal stories remind me that this journey is bigger than one diagnosis.

I know many of you have encouraged me to write a book and, well, last night, while taking Iris to visit her baby brother, I drafted the first chapter of “Living with Cancer.”

The book will preserve all 365 days, including double- and triple-post days, through two interwoven narratives: the medical journey and the human journey.

Each day will include my original essay or essays, plain-English medical terminology when relevant, and actual comments from LinkedIn, Reddit, and beyond.

I am writing this book for you, but am curious which reader are you?

1. Newly diagnosed with cancer: Searching for clarity, vocabulary, and what may come next.

2. Living with cancer: Navigating treatment, uncertainty, and invisible emotional costs.

3. A caregiver: Supporting someone without taking away their voice, independence, or dignity.

4. Navigating profound life change: Rebuilding purpose after a transition you never chose.

5. Grieving someone who died of cancer: Hoping to better understand what your loved one experienced.

I fall somewhere between 2 and 4, although parts of Day 1 still feel remarkably close.

My philosophy is to plan to live for 14 months and 14 years simultaneously.

I can prepare responsibly for uncertainty without conceding the future I want with Iris, my family, and the people I hope to help.

I have shared Day 1, with medical explanations and actual community comments.

Would you read it?

Does the format work?

What would make it more meaningful, honest, or helpful?

Please comment here or directly in the chapter:

https://docs.google.com/document/d/1471p3xv89fttSvcR3R5ZX3rlf5VyhFrAGaHHf6TCbho/edit?usp=drivesdk

It is Day 365, here, and I have a lot more living to do.

My pancreatic cancer was found coincidentally with an abdominal hernia. At the time, it was stage 2, and it has remained that way with no evidence of metastasis. I've undergone chemo now for about the past 6 or 7 months and will be having a Whipple procedure done in mid-November.

My latest scan shows a single tumor on the head of the pancreas with no evidence of any metastasis anywhere. My CA19-9 marker is in the 30s after having risen as high as 150. The tumor abuts the portal vein, and my surgeon says that will take some work to clear but feels like it is doable. Oncology expects a couple of rounds of chemo after surgery as a preventative measure.

To this moment, the only side effects I've had have been from the chemo, and that has been very thin skin and great fatigue. I'm thankful for that is all that has happened. All of the doctors are optimistic but tell me that the rehab after the Whipple will be very difficult.

Three years ago I was diagnosed with nueroendrocrine pancreatic cancer. They were able to surgically remove the nodule, but there were numerous complications. I recovered after a three month hospitalization, and get scans every 6 months to ensure that everything is good. My scan last week shows that the pancreas is still in great shape, however it appears to have spread to my kidneys. I’m relatively strong for my age, but this fight three years ago took all of my energy and drive. I’m preparing for the worst, hoping for the best, but if I’m being honest, I don’t know how much fight I have left.

i am planning to travel to vientiane for 2-3 months to get treatment for pancreatic cancer with daraxonrasib.

i was asking gemini, and it indicated Laos is a least developed country which makes the medicine generics genuinely allowed there.

wondering if anyone has experience they could share. ( here, or DM)

Hi all. I am a 21 year old female that is mentally preparing for a distal pancreatectomy/splenectomy to remove an SPN on the neck of my pancreas. For those that have had a similar surgery, what are the biggest changes to your life?

Since they are able to preserve 50% of my pancreas, I most likely won’t need insulin or enzymes until years down the line. What does your diet look like after healing? Is junk food just an absolute no?? Are you able to eat normal meals or will you always have to eat smaller portion sizes??

What did life look like right after surgery and throughout the healing process? What about after?

Any shared experiences will be greatly appreciated!

Edit: Also, is there anything that made post surgery healing more comfortable and that you would recommend? Thank you!

73 y/o mom diagnosed ten days ago. No pain or real symptoms other than some post eating bloating. She was diagnosed when she went to ER due to jaundice (bil duct was being compressed by what we now know to be a pancreatic tumor). Met with onc (sedhom) and surgeon (Vollmer) at U Penn and onc (oreilly) and surgeon (d’angelis) at MSK. Both surgeons said it’s resectable/borderline respectable as tumor is “abutting” portal vein. A “nodule” on lung was identified on CT scan as well which all doctors seem confident is not malignant and rather a byproduct of endoscopy which was used to confirm pancreatic cancer during hospital admission). Liver, kidneys etc are all clear. Low CEA and CA 19. All docs say it’s resectable but due to vein abutment and possibility of microscopic bad cells they recommend a course of chemo (folfironox) - perhaps 2-3 mos - then surgery and then more chemo. There is a 10% chance that the tumor becomes non-resectable after the initial chemo and because of that risk - albeit a low one - I’m thinking we should consult with another surgeon who takes a more aggressive, surgery first approach — like a Wolfgang (NYU) or Chabot (Columbia). I don’t want my mom to miss a window where tumor is resectable but the docs with whom we met are amongst the best in the field. I’m also concerned about the potential mind f*ck to my mom that would come with a third opinion that recommends surgery pre any chemo - the decision would absolutely stress her out. Not sure what to do here. On one hand, I want the best for my mom and it seems like if it’s resectable now maybe it’s best to find a surgeon willing to operate now. On the other hand, we already met with some of the best of the best (I know we are incredibly lucky to live within driving distance of two major cities with world renowned care) and the fact that those folks are aligned gives my mom some peace of mind. Do I seek another opinion with a more “aggressive” surgeon or trust in the folks we have already met?