My surgery was scheduled for 7 a.m. on a Monday. We had to arrive two hours early, so we woke up at 4 a.m. and drove the quiet, empty streets to the hospital. Usually, the hospital entrance was clogged with cars waiting for valet service, but at that hour it was still. I felt caught between two impulses—wanting to delay what was coming, yet desperate to get it over with.

In the pre-op area, patients were separated by thin curtains, with only a few private rooms available. I was told I was “lucky” to get a room, which only made me sad about those who didn’t.

One by one, my care team came: the nurse, IV nurse, anesthesiologist, and surgeon. Each asked my name, date of birth, and procedure—safety checks that felt more like procedural tests. I had only a vague idea of what was ahead.

The nurse took my vitals, started an IV, and my anesthesiologist tried to keep the mood light. He joked that he’d “make me sleep through the worst part.” My surgeon reassured me that everything looked good, even though I had vomited during the bowel prep. Mo held my hand until the moment they wheeled me away. That was the last thing I remember before the lights blurred.

When I woke up, pain and thirst consumed me. I tried to call for help, but no one seemed to hear me. Nurses moved quickly between patients; everything felt distant. Mo appeared and told me the surgery had gone well. I think I stayed in recovery for two or three hours before being moved to my room—on the 16th floor, in a section called The Pavilion.

The first few days were a haze: pain, nausea, the urinary catheter, and the new reality of an ostomy bag I couldn’t bear to look at. Nurses emptied the bag for me while I lay in bed. When they tried to show me how to change it, I closed my eyes. They encouraged me to walk to speed recovery, but even sitting felt impossible.

At first, I was allowed only to drink liquids. Then, after a while, I was given permission to try soft foods. I battled constant nausea, which I only managed to deal with by taking regular doses of Zofran. Two nights after the surgery, after worsening pain, a portable x-ray was brought in as it was hard for me to move out of bed. The process was rough, mechanical, and uncomfortable—metal plates pressed under my back while I lay still. The next day, they did more CT scans and the doctors mentioned a “small internal leak” was causing the pain. They reassured me that it was nothing to worry about. Later, I learned it wasn’t that simple.

One afternoon, an older woman entered my room. She said she’d lived with an ileostomy for 30 years and wanted to reassure me that life could still be full. She could swim, bike, and live normally. But the moment she said hers was permanent, my heart dropped. Why would the hospital send someone whose situation felt so different from mine? And just days after my surgery? The woman asked if I had questions, but I couldn’t even think. I was still in shock at the prospect that I might have to live with an ileostomy forever. Instead of comfort, her visit deepened my fears about the future.

Things didn’t get much better the following day. On Saturday morning, a debate ensued among the hospital staff about whether I should be discharged. Several doctors stood around my bed debating whether I was ready to go home. My primary surgeon wasn’t there. My nurse insisted I wasn’t ready; the others said I was. They argued about me as if I weren’t in the room. I felt invisible and it was this experience that broke my trust with my caregivers. I wanted to be seen, heard, and treated as an equal partner in my own care.

I was tired of hospital beds with plastic covers, endless IVs, blood draws, and EKGs. I missed my dog, Jada. When the doctors asked if I felt ready to go home, I said “yes” – even though I wasn’t sure and was terrified to leave the safety of the nurses.

Finally, on Sunday, after a week in the hospital, I was discharged. I was stressed about what home would feel like — whether I’d manage, whether everything would be okay — yet at the same time, I was so eager to be outside again, to feel the early fall breeze. A nurse wheeled me downstairs, and as we waited for the valet to bring our car, I took a deep breath. When I sat down inside the car, I started crying — partly from relief that I was finally going home, and partly from the fear of what awaited me there.

Design takeaways:

• Peer support is valuable, but timing and matching matter. Patients need empathy for where they are emotionally, not where others think they should be. Misaligned empathy or attempts at support that aren’t properly timed or contextually matched can actually backfire, making patients feel even more alienated and stressed.

• Medical rounds should be designed as inclusive conversations, not presentations made around the patient.

I was thrilled to go home but terrified something would go wrong. Jada greeted me, jumping with joy, but we had to be careful—one bounce could hurt my healing abdomen. That first night, nausea hit hard. I vomited from 9 p.m. to 4 a.m., too weak to even reach the bathroom. I was dehydrated, but every sip of water came right back up.

The hospital advised electrolyte drinks, but I couldn’t tolerate them. Only coconut water and a homemade lemon-honey-salt mix helped. Those first days felt endless. I counted hours just to survive the nights.

The visiting nurse came twice a week, teaching Mo and me how to change the ostomy bag. Each session took nearly an hour. The process had so many steps, but she made it look effortless. I couldn’t help much during the change because I still couldn’t look at my stoma. She gently suggested naming it to “befriend” it, but I couldn’t imagine naming something I wasn’t even ready to see.

The final step of changing the bag was to press my hand gently over the stoma to warm the adhesive.  But my hands were cold from fear, so I’d ask Mo to use his instead. His warmth grounded me.

<img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/469fba3c-8693-4609-a9d7-03cb3fd0b5e9/Changing+ostomy.png?">

Even small things became overwhelming. Brushing my hair one day, I realized it had clumped into a thick knot. My mom tried to help, but it was impossible. I broke down crying. I didn’t like my hair, my body, or this new version of myself. Everything felt too heavy — eating, showering, even breathing.

I couldn’t eat much, and the nausea was constant. Every time I emptied the ostomy bag, the smell made me gag. I wore a mask or held mint near my nose while Mo helped me empty the bag. The first week was the hardest. By Saturday, I couldn’t keep even a small bite down. When we called the nurse, she told us to go to the ER. I was severely dehydrated and needed IV fluids.

We went to the ER around 4 p.m on Saturday. They gave me IV fluids, then said I needed scans to find out what was happening. Around 1 a.m., after the CT scan, a doctor told us they saw an infection and would need to place a drain in the morning to remove the fluid. I was exhausted, scared, and heartbroken — I didn’t want to be in the hospital again.

This time, we didn’t ask for a private room. They placed me with another patient who was already asleep. The room was small, crowded, and dark — no window on my side, just the sound of the hallway outside (Bed number 2 in figure below). My bed was near the door, and the other bed only had the window view and space near the bathroom. It didn’t feel like a room meant for two people, but somehow, it was.

<img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/272178b7-0771-4834-9a9f-7722f6996aa7/shared+room.png?">

That night and the next morning dragged on. I was told not to eat or drink while waiting for the interventional radiology team to place a drain to remove the infection fluid. The wait stretched for hours. They gave me swab sticks to wet my lips with ice water, but I was desperately thirsty. Every hour, I hoped someone would come for me. Finally, around 4 p.m., they did.

After placing the drain, I felt a little better. A new drain bag hung at my side, attached to my gown. The nurses emptied it several times a day and measured the output. They said once it was under 10cc for three days, they could remove it. I felt deflated. I wanted fewer bags, not more.

One nurse mentioned that her mother had a drain for four months. Instead of comforting me, it made me anxious. I couldn’t help but overthink—what if mine takes that long too? I didn’t want comparisons or other people’s timelines; I just wanted reassurance that my recovery would be okay.

That night, I was told to stick to liquids. But near midnight, I threw up again, terrified that the drain hadn’t worked. Fortunately, by the next day, things started to improve. I’ll never forget the first real meal I could keep down: ghormeh sabzi — my favorite Iranian stew, had it without beans so it was safe for my stoma. I wasn’t allowed beans, seeds, or raw vegetables, which was hard since I loved all of them, but that simple meal made me feel human again.

Three days later, they ordered another CT scan to check if the drain was working. The scan showed another fluid pocket — one the first drain couldn’t reach. I needed a second procedure. Once again, I waited for hours, fasting and anxious.

While waiting the next day, a social worker visited me. I had been meeting with one since my diagnosis — someone to help Mo and me process the emotional weight of everything. She gently suggested joining a support group for people who had gone through similar experiences. I said no. I didn’t want to compare myself to others or absorb their pain. Looking back now, maybe hearing other stories would have helped. At that time, I just wanted to survive my own.

By afternoon, after waiting for 16 hours, someone finally came to take me down to interventional radiology — which, for some reason, was located in the hospital’s basement. The dim, windowless corridors only added to my anxiety. 

The doctor came to talk to me before starting the procedure. He told me they would need to place another drain, this time near my buttock. I panicked — how would I sit or sleep? He reassured me it was the only way to reach the infection.

When I woke up, I was back in my room — now with an ostomy bag and two drains attached to my body. I felt weighed down, but at least I could eat, drink, and keep food down. My nausea faded each day, and I slowly stopped needing medication for it.

After two more days, they told me I could go home. It had been eight days since I was re-admitted. I was happy but anxious — memories of my last discharge haunted me. Still, I wanted to believe this time would be different.

Design takeaways:

• Patient rooms are often optimized for efficiency, not recovery. Access to light, privacy, and quiet are fundamental elements of healing.

• Prolonged waiting without communication compounds anxiety and discomfort. Real-time updates could dramatically reduce patient distress.

• Procedure spaces often ignore patients’ emotional states. Natural light, sound design, and visual warmth can make pre-procedure anxiety more manageable.

With two drains and an ostomy bag, even simple routines became complicated. I couldn’t take a shower — only wash my hair and wipe my body with a cloth. Sitting comfortably was impossible; I had to lean to my right side to avoid pressure on the drain, and sleeping was the same — always on my right. I didn’t know how long this would last.

At least by then, I could empty my ostomy bag myself. The nausea had faded, and for the next month and a half I needed to measure and record every output before my follow-up with the ostomy nurses. We also had to track the drainage from both tubes — measuring and recording the output each day. Twice a day, Mo injected 10cc of saline through the drains to keep them clear, and we emptied them at night. It was a lot to manage — measuring, recording, cleaning.

I started walking around the house, then around our yard, trying to regain strength. I started going out and walking outside but hiding two drains wasn’t easy. So, I just tried to accept my situation as it is and not to abandon myself from outdoor activities.

After a few days, the drain in my abdomen began producing less fluid — under 10cc for three days — so we scheduled its removal. Four days after returning home, we went back to the hospital. 

As I was lying there, an older man in the next bed kept peeking through the curtain, smiling and saying hi. The nurse kept closing it, but he’d slide it open again. Maybe he had mistaken me for someone else — or maybe he just wanted to make me laugh and forget the discomfort. And in a way, it worked.

The nurse began removing the dressing—peeling off the sticky tape was actually the hardest part. That’s when I realized I’d forgotten to bring my adhesive remover spray, something I always used at home when changing my ostomy bag. That little bottle had become one of my favorite tools through this journey; it saved me from so much unnecessary pain. Once the dressing was finally off, the nurse told me to take a deep breath as she pulled out the catheter. It was quick and surprisingly painless.

I was so happy to have one drain removed — it felt like progress. Now I only had one drain left, the one near my buttock. It wasn’t in the most comfortable spot, and the output remained high, so I knew it would take longer before I could be free of it.

Conflicting recommendations:

Later, I met my oncologist to discuss whether I would need chemotherapy. I was nervous, but also hopeful. They had tested 28 lymph nodes—none were cancerous. Maybe I wouldn’t need chemo.

Before seeing her, I did some routine lab work to check my blood cells. When we finally met, she told me I did need chemotherapy. I had hoped she would say otherwise, and hearing that broke me. I was exhausted from hospitals, from feeling weak, and I wasn’t ready for this news.

She recommended FOLFOX for six months—a combination of Oxaliplatin and 5-FU. I asked if such an intense regimen was necessary for stage 2. She insisted it was the standard protocol and pushed to start within two weeks. I needed time to process. She told me I’d need a port before starting chemo and assured me it was fine to place it even with my drain.

On the other hand, during an appointment with my surgeon and ostomy nurses, my surgeon told me I didn’t need six months of chemo. A pill version of 5-FU would be enough for three months. I was shocked. The oncologist’s recommendation had been more intense, and later I found out she hadn’t been present at the tumor board discussion. Her advice had been her own, not the team’s.

Then in the next appointment with my oncologist, she explained four different chemotherapy options and asked me to choose. I was stunned—I expected guidance on the best course, not a menu of options.

Design takeaway:

• Decision design in oncology must balance agency with guidance. Patients need to feel informed, not abandoned. Options should be explained with rationale and personalized recommendations, not left as multiple-choice questions in a moment of fear.

  • The system placed the burden of decision-making entirely on me, without providing clear guidance on the most appropriate or evidence-based option for my case.

Port placement:

It was the second week of October when I went for the port placement. I still had my drain. As before, Mo wasn’t allowed in the pre-op room, so I went alone. A nurse came to take my vitals and place an IV. My veins are small, so it took two attempts. She made an unnecessary comment about my veins being “too small to find and it’s good you are getting a port.” I got angry—I just wanted her to do her job.

I waited for the interventional radiology team. One nurse explained potential complications and asked me to sign the consent. I begged her not to go into the risks, but she insisted, saying, “We do over a hundred port placements a week.” I was shocked. That number wasn’t comforting—it felt like the least empathetic way to say this, and just to advertise that they know their job.

When I mentioned my drain and ostomy bag, she was surprised. After 30 minutes, the radiologist returned and said they couldn’t place the port. The drain posed a risk of infection, and the port placement could not proceed. I was furious. My oncologist had told me it was fine. 

The radiologist suggested a PICC line instead. I was resistant—it would require daily care and remain outside my body. I messaged Mo in frustration. He convinced me to stop and prioritize my drain. I declined the PICC and left, exhausted and angry. Later, a nurse called to reschedule the port, but I refused until my drain was removed.

<img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/8b08dd70-98e4-4cf4-b00f-f42150649e1e/port+vs+picc.png?">

Design gaps:

• No shared system view. The oncology and radiology teams didn’t have synchronized access to my infection or drain status.

• Scheduling overlooked context. The system approved a port placement even though my active drain was clearly documented in my chart.

• Knowledge gap between providers. My oncologist didn’t realize that having a drain made the procedure unsafe.

• Patients bear the cost of misalignment. I was left to coordinate between departments myself — managing calls, messages, and confusion — all while recovering from major surgery.

Design Reflection: Coordination Is Care

This was a design failure, not just a communication failure. The systems that manage scheduling, medical notes, and care coordination weren’t designed with the patient as the center point.

When systems don’t talk to each other, patients become the messenger — and in complex cancer care, that’s when errors, anxiety, and distrust multiply.

Design takeaway:

• Cross-departmental care systems should visualize dependencies and risk factors — not just tasks. A drain, a fever, or an infection shouldn’t be invisible data points when scheduling procedures that could endanger recovery.

It was around the last week of October when the output of my second drain had been below 10 cc for three days. We tried to schedule an appointment for removal, but they said a fistulagram was needed first. A fistulagram helps doctors see whether the passageway is open, blocked, or leaking so they can safely remove the drain.

Scheduling this seemingly simple appointment turned out to be extremely complicated. No one answered the phone. We tried different numbers, even visiting the same place where I had my first drain removed, asking for the radiology department’s contact. Nothing worked. Days passed with endless calls. A nurse eventually gave us a number, but no one answered. My surgeon’s team replied quickly to messages, but they could only help so much. I can’t even remember exactly how we finally managed to book the appointment—but we did.

On the day of the procedure, after waiting for an hour and a half, a very young nurse took me to the room. I changed in the bathroom and lay on my stomach, which was uncomfortable with my ostomy bag. I asked for a pillow, but it didn’t help much. Several assistants and the doctor arrived to start.

First, they injected contrast dye to check for any leakage. The procedure seemed straightforward, but it quickly became stressful. The doctor didn’t seem confident in handling the device. She injected more dye and asked me to move, repeatedly saying she didn’t know what it was that she was seeing—at least ten times. Each time, my anxiety grew. Who was this doctor that didn’t know what was happening? My trust in her vanished.

In the end, she told me I wasn’t ready for drain removal and that I’d need another appointment next week. I couldn’t believe it—the output had been below 10 cc for five days. I asked her to explain, even requesting she draw it for Mo, but she had no paper. Exhausted, we accepted it and tried to get a reliable number for the department for the next appointment.

A week later, when I returned, I made it clear I didn’t want any fellows in the room—only an attending to do the procedure. This time, the same doctor who had placed the drain initially performed the procedure. I immediately felt more confident. He checked everything quickly, explained why the drain couldn’t be removed last time, and what had changed. Then, finally, the drain was removed. I was overjoyed. I felt free again. I realized that in a training hospital, it was important to ask for attendings to perform procedures at least for my case—no more fellows.

Design gaps:

• Extremely difficult to schedule a routine procedure due to unresponsive phone lines and unclear departmental contact.

• Lack of coordination between departments caused unnecessary delays despite my condition being clearly documented.

• Communication breakdowns left me relying on trial-and-error calls and messages to multiple staff members.

• Lack of training or supervision for fellows leading to uncertainty and stress during procedures.

• Poor communication and inability to explain decisions clearly to patients and families.

• Patients left feeling anxious and frustrated due to unclear rationale for procedural delays.

Design takeaway:

• Transparency, training, and tone all shape patient trust. Teaching hospitals can still be human-centered — if mentorship includes communication and empathy, not just technical skill.

• Teaching hospitals must balance training with patient trust. A transparent approach — explaining who’s learning and who’s leading — would restore confidence and reduce fear.

<img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/0b875191-87a4-4e1c-be3a-5826a1b1f96e/journey+map-+surgery.png?">

When the drain was finally gone, I could sit, sleep, and shower again. The feeling of water on my skin after two months felt miraculous.

Only two steps remained: starting chemotherapy and, eventually, my stoma reversal.
We decided to continue treatment at Sibley Memorial Hospital in D.C., closer to Mo’s family — closer to support.

This stage of my journey revealed something fundamental:
Health systems are designed around efficiency, not experience — around workflows, not people.

Every moment of confusion, every silence, every hallway without light or human warmth has a design root. And redesigning cancer care means more than new tools or protocols; it means rethinking how care feels to the person living inside it.

These months taught me how fragile trust can be — not just in medicine, but in systems. When care is designed around protocols instead of people, even well-meaning clinicians become part of an inhuman process. Patient-centered design isn’t about aesthetics or efficiency; it’s about dignity, timing, and empathy — the things that make healing feel human.