You are sitting at your kitchen table. You have three folders. You have one laptop. The time is four in the morning. You are looking at a spreadsheet. The spreadsheet has twelve tabs. Each tab is a different part of your life. One tab lists the doctors. One tab lists the medications. One tab lists the dates of every blood test.

You built this spreadsheet because the hospital did not give you a map. The hospital gave you a brochure. The brochure had a picture of a smiling woman. The brochure did not have a list of contact numbers. The brochure did not have a timeline. You are the system designer now. You did not ask for this job. You do not get paid for this work. You do the work because you want to stay alive.

The Column Header That Says “Expires”

Rafael sits at a desk in a different city. Rafael is in week seven of the process. Rafael has a spreadsheet too. Rafael added a new column yesterday. The column header says “Expires.” Rafael added the column because he learned a hard lesson.

He learned that medical records have a shelf life. He learned that a PET scan from three months ago is useless. He learned that a visa application needs a fresh letter. Rafael is the person that other families ask for help. Rafael shares his template. The families download the template. The template is better than the documents from the institution. The template has the truth. The institution has the rules.

The Worker in the Factory

I am an industrial hygienist. I work with safety systems. I spend my days looking at manuals. I spend my days looking at how people follow instructions. I once believed that the manual was the work. I believed that the institution knew the best way. I was wrong. I was very wrong.

The manual is written by people who want to avoid a lawsuit. The manual is not written for the person who is in danger. The worker in the factory knows the real steps. The worker knows which machine will fail. The worker knows which valve is stuck. The patient is like the worker. The patient knows where the system breaks.

I learned this when I got a paper cut today. The paper cut came from an envelope. The envelope held a medical report. I looked at the blood on the paper. I realized that the paper is just a proxy for the person. The system treats the paper. The patient manages the person.

You realize that the institution prefers your confusion. Clarity is expensive. Confusion is cheap. If the hospital explains every step, the hospital is responsible for every step. If the hospital stays vague, you must find your own way. You find your own way by building tools.

You build a document tracker. You build a phone log. You build a list of questions for the next multidisciplinary team meeting. This is unpaid systems design. Thousands of people are doing this work right now. Each person is solving the same problem from scratch. Each person is building a map that the hospital already has. The hospital has the map internally. The hospital does not share the map with you.

The Complexity of CAR-T

The process of finding treatment for relapsed or refractory blood cancer is complex. You look at the options. You see the term CAR-T therapy. You see that seven CAR-T products are approved in China. You write the names of the products in your spreadsheet. You write down Relma-cel. You write down Axi-cel. You write down Idecabtagene vicleucel.

You list the targets. You write CD19. You write BCMA. You search for the response rates. You find that the overall response rate for DLBCL is between 70% and 83%. You find that the complete remission rate for B-ALL is between 80% and 92%. You find that myeloma trials show 90% to 100% response. You put these numbers in a column. The numbers are better than the numbers in your home country. The cost is also different.

The Budget Tab

The cost in the United States is between $500,000 and $800,000. The cost in China is between $100,000 and $150,000. You create a budget tab. You list the price of the treatment. You list the price of the flight. You list the price of the hotel for ten weeks.

You are doing the work of a travel agent. You are doing the work of a financial planner. You are doing the work of a medical coordinator. The system expects you to do this work. If you do not do the work, you do not get the treatment. This is the reality of CAR-T treatment in China. The science is advanced. The logistics are your responsibility.

Mapping the Nine Steps

You map out the nine steps. Step one is the medical record review. You need the pathology report. You need the immunohistochemistry results. You need the imaging files. You put a checkbox in your spreadsheet for each file. Step two is the multidisciplinary team review. The doctors look at your data. The doctors decide if you are eligible.

Step six is the manufacturing. This is the part that surprises you. The manufacturing in China takes 24 to 36 hours. The manufacturing in the United States takes three to five weeks. You write this in your spreadsheet. You underline the numbers. You wonder why the difference is so large.

Step seven is lymphodepletion. You receive chemotherapy. The chemotherapy clears the way for the new cells. Step eight is the infusion. The hospital puts the modified cells back into your body. Step nine is the follow-up. You stay near the hospital for several weeks. The doctors monitor you for side effects. The doctors look for cytokine release syndrome. The doctors look for neurotoxicity. You have a tab for side effects. You have a tab for daily temperatures.

The Project Manager Patient

The spreadsheet grows every day. The spreadsheet is now thirty megabytes. The spreadsheet has links to eleven research papers. You read papers from the Blood Cancer Journal. You read papers from Frontiers in Immunology. You cite the sources. You act like a scientist.

You do this because you cannot afford to be a passive patient. A passive patient gets lost in the corridors. A passive patient waits for a call that never comes. An empowered patient is just a patient who has been forced to become a project manager. You do not feel empowered. You feel tired. You feel the weight of the data.

The hospital does not ask to see your spreadsheet. The hospital has its own software. The software does not talk to your spreadsheet. The software does not track your hotel reservation. The software does not know when your visa expires. The software only tracks the billing and the labs.

The gap between the software and your life is where the failure happens. You fill that gap with your labor. You are the bridge. You are the glue. You are the person who ensures the doctor has the right file at the right time.

You talk to other families in the online group. You see the same pattern. A woman in London has a spreadsheet. A man in Sydney has a spreadsheet. They all have the same columns. They all have the “Who, What, Sent, Confirmed” headers. They all spent hundreds of hours building these tools. If the institution provided the map, these thousands of hours would be saved. The families could spend those hours with each other. The families could sleep. But the institution does not provide the map. The institution provides a brochure.

Efficiency vs. Bureaucracy

I look at the paper cut on my finger again. The skin is open. The blood has stopped. The body knows how to heal. The body has a system. The body does not need a spreadsheet to fix a cut. The body does not need a visa to move cells to a wound.

The body is efficient. The systems we build for the body are not efficient. The systems are heavy. The systems are slow. We build spreadsheets to survive the systems. We build spreadsheets because the institution has decided that our labor is free. Our labor is the hidden subsidy that keeps the medical system running.

The Evidence of Struggle

You click save on the file. You close the laptop. The sun is coming up. The sun is bright on the kitchen table. You have a list of things to do today. You have to call the hospital in Shanghai. You have to check the pathology report again. You have to make sure the CD19 expression is documented. You have to update the “Confirmed” column.

The spreadsheet is the only thing that gives you a sense of control. It is a false sense of control, but it is all you have. The spreadsheet is the map. The spreadsheet is the work. The spreadsheet is the evidence of your struggle.

When you finish the treatment, the spreadsheet will stay on your laptop. You will not delete it. You will keep it in a folder. You will name the folder with the date. The spreadsheet will not be part of your medical record. The hospital will never see it. The data you gathered will not help the next patient.

The next patient will start from scratch. The next patient will open a blank file. The next patient will type “Step One” at four in the morning. This is the final failure of the system. The system does not learn from the maps we build. The system only waits for the next person to get lost.