I was doubled over on a wooden bench in the Haight, sweating through my shirt at 9 in the morning. My wallet was on the ground next to me because I couldn’t hold it anymore. I looked exactly like what the two SFPD officers thought I was when they found me: another addict having a bad morning in San Francisco.
“What are you on?!” one of them shouted.
I could barely get the words out. “Nothing. I have cancer. I need to get to the hospital.”
I threw my wallet at him. Not out of anger. I just didn’t have the strength to hand it to him like a normal person.
This wasn’t supposed to happen. I’d beaten pancreatic cancer. I’d survived a Whipple surgery. I’d made it through nine months of cisplatin chemotherapy. I’d rung the bell at UCSF.
But there I was, collapsed on a bus stop bench, looking like I was coming down from something, when really I was just trying not to die from rationing my medication.
The Morning It All Went Wrong
It started with yellow bile. That’s always the warning sign for me. When my body starts producing excessive saliva like a dog slobbering, I know I have about five minutes to find a bathroom or trash can.
That morning, I vomited up what looked like a slimy yellow hockey puck. Bile. Stomach lining. The stuff you’re never supposed to see coming back up.
I knew immediately what had happened. I’d been rationing my Creon for weeks.
Creon is the pancreatic enzyme replacement I need to digest food. Without half a pancreas, my body can’t break down protein, fat, or basically anything that isn’t water. I take 22 pills a day. Six with every meal, two with snacks. I’ve been taking them for 14 years, and I’ve never forgotten them once since the incident I’m about to tell you about.
But a few months after my Whipple surgery, I lost my health insurance due to an administrative error.
Creon costs $600 per bottle. That’s 100 pills. At 22 pills a day, one bottle lasts me about 4.5 days. Do the math. That’s roughly $4,000 per month out of pocket.
I searched everywhere for a cheaper option. There isn’t one. Creon is the gold standard for pancreatic enzyme replacement, and there’s no generic version that works the same way.
So I did what seemed rational at the time: I started rationing.
Half doses. Skipping snacks. Eating only two meals a day instead of the four to six small meals my doctors told me I needed.
For weeks, I told myself I was managing it.
What Happens When You Ration Creon
Your stomach doesn’t care that you can’t afford your medication. It doesn’t care that you’re trying to stretch 100 pills into 200. It just knows it can’t digest food, and eventually, it revolts.
The first sign was floating stool. Then loose stool. Then diarrhea that wouldn’t stop no matter what I ate.
I went back to the BRAT diet. Bananas, rice, applesauce, toast. The same protocol I used in the hospital right after surgery. It helped a little, but not enough.
Then came the pain. Not sharp pain. Dull, constant, grinding pain in my abdomen that made it hard to stand up straight. The kind of pain that makes you sweat even when you’re sitting still.
And then one morning, the excessive saliva started. I knew what was coming. I’d vomited bile before, but never like this.
When it came up, it wasn’t just bile. It was pieces of my stomach lining.
I couldn’t hold down water after that. Not even a sip. I knew at that point I had to get to a hospital, but I didn’t have money for an ambulance and I didn’t want to worry anyone by asking for a ride.
So I decided to walk to UCSF. Or take the bus. Whichever I could manage.
I made it to the bus stop in Haight-Ashbury before my body gave out.
“What Are You On?!”
The two SFPD officers were young. Mid-twenties, maybe. They’d probably responded to dozens of overdoses in the Haight that year alone. To them, I looked like every other case: skinny guy, sweating, doubled over, can’t talk coherently.
One of them asked again. “Sir, what drugs did you take?”
I managed to get it out this time. “I have cancer. Pancreatic cancer. I need to get to the hospital. Please.”
I threw my wallet at his feet. Not because I was being difficult. I genuinely couldn’t lift my arm to hand it to him.
He picked it up, opened it, looked at my ID. Then he looked at his partner.
I don’t know what they saw in my wallet. Maybe my UCSF patient card, maybe just my address and the fact that I wasn’t some transient. But their entire demeanor changed.
“We’re calling an ambulance.”
I tried to say thank you, but I think it came out as a groan.
What the Hospital Found
By the time I got to UCSF, I’d been without Creon for so long that my digestive system had essentially shut down. My stomach lining was damaged. I was severely dehydrated. My electrolytes were completely off.
They put me on IV fluids immediately. Two days in the hospital. The attending physician was furious. Not at me, but at the insurance company.
She personally called them and begged for pre-authorization so I could get my Creon prescription filled. I don’t know what she said to them, but it worked. My insurance came back on within 48 hours.
When I got out, I picked up my prescription. Six bottles. Enough for a month. I’ve never rationed a single pill since that day.
The Five Minute Warning Sign
Here’s something they don’t tell you in the hospital: your body will warn you before things get catastrophic, but the warning window is short.
For me, it’s always excessive saliva. The moment I start producing saliva like I’m about to drool, I know I have five minutes, maybe less, to find a bathroom or trash can.
If you’ve had a Whipple surgery and you’re experiencing this, don’t ignore it. It’s your body telling you something is very wrong with your digestion.
Other warning signs I’ve learned to recognize over 14 years: dull, grinding abdominal pain that doesn’t go away. Floating or oily stool, which means fat isn’t being digested. Sudden, urgent diarrhea after eating. Extreme fatigue after meals because your body is working overtime trying to digest without enzymes.
If you’re rationing Creon or skipping doses, stop. I know it’s expensive. I know insurance is a nightmare. But vomiting up your stomach lining is worse.
What I Wish Someone Had Told Me
If I could go back to the week I lost my insurance, here’s what I wish someone had told me.
Fight the insurance company immediately. Don’t wait. Don’t assume it will resolve itself. Call every day. Get your doctor involved. Get a social worker involved. Insurance companies delay because they’re hoping you’ll give up or go away. Don’t.
Hospital financial assistance programs exist. UCSF has one. Stanford has one. Most major hospitals do. If you’re uninsured or underinsured, ask about financial assistance before you start rationing life-saving medication.
Your doctor can appeal denials. My oncologist at Stanford wrote a letter explaining that Creon wasn’t optional for me. It was as essential as insulin for a diabetic. That letter got my insurance to cover it at the highest tier.
There are patient assistance programs. AbbVie, the company that makes Creon, has a patient assistance program for people who can’t afford it. I didn’t know this at the time. I wish I had.
Don’t ration enzymes. Just don’t. The damage you do to your digestive system can take months to repair, and in severe cases, it can land you in the hospital, which costs way more than the medication you were trying to avoid paying for.
Fourteen Years Later
I still take 22 Creon pills a day. I still carry them everywhere. In my car, in my bag, in my jacket pocket. I have backups in my backups.
I’ve never forgotten to take them since that day on the bus stop. Not once.
I still get a little anxious when I see a bottle running low, even though I have insurance now and my prescriptions auto-refill. There’s a part of me that remembers what it felt like to ration them, and I never want to feel that way again.
The SFPD officers? I never saw them again. I don’t even know their names. But I think about them sometimes. They could have walked past me. They could have assumed I was just another addict and kept going. They didn’t.
If you’re reading this and you’re struggling with Creon costs, with insurance denials, with trying to make 100 pills last 200 doses, please don’t do what I did.
Call your doctor. Call the hospital financial office. Call AbbVie. Call someone.
Because collapsing on a bus stop in the Haight while cops assume you’re on drugs is not a sustainable health plan.
What This Story Can’t Give You
This article tells you what happened. It tells you what went wrong and what I learned the hard way.
But it can’t give you the daily checklist I use to manage Creon dosing. It can’t give you the meal timing strategy that prevents digestive crises. It can’t give you the list of foods that work and the foods that will wreck you even with enzymes.
That’s what I put in the Complete Whipple Survival Guide. It’s everything I learned over 14 years. The stuff the hospital discharge papers don’t cover. The stuff your surgeon doesn’t have time to explain. The supplement protocol that made my surgeon ask for my doctor’s phone number. The 7-day meal plan that actually works. The exact Creon timing protocol I use every single day.
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