Tokyo didn’t enter this story as a neat metaphor.
It arrived like a reflex.
I read my CT results, I panicked, and I booked the trip.
Not because I was trying to outrun reality — but because I needed something in my life that wasn’t a corridor, a scan, a waiting room, or a definition. I needed forward motion I could control with my hands and my feet: a ticket, a plan, a camera, a map of light.
If the appointment had felt calm — if I’d walked out genuinely believing all lesions were stable — I’m not sure Tokyo would have happened the same way. Maybe I would have taken my time. Maybe I would have been practical. Maybe I would have waited.
But that isn’t what happened.
The sequence that matters
Here’s the order of events, because the order is the point:
- I read the CT result.
One dominant liver lesion grew. I felt it in my chest before I felt it in my brain. - I freaked out and booked Tokyo.
The booking wasn’t denial. It was my nervous system taking the wheel and choosing something that felt alive. - I had the meeting.
And in that meeting, something steadied me. I latched onto the part I could carry: stable disease. - I walked out hearing: “everything is stable.”
I didn’t invent that on purpose. I compressed what I heard into what I could hold. - Last night, I read the meeting notes.
And the precision returned. Not cruelly — just clearly. Stable disease because the target lesions didn’t grow. But that dominant liver lesion still did.
That’s when I understood why my internal story felt inconsistent. It wasn’t dishonesty. It was emotional triage. It was selective hearing doing its job.
Comfort and precision can both be true — but they aren’t the same
What the notes reflect is this: No progression of the target lesions. Therefore, the study assessment is Stable Disease (SD).
That’s real. It matters.
But it isn’t the same as: All lesions are stable.
Those two sentences sit close together. Under stress, they can blur into one. But one sentence is a clinical category. The other is a blanket comfort.
And I’m learning that I can’t build plans out of blanket comfort.
I can build plans out of precision.
Here’s the truth: I’m not going at 100%
This is the part I have to say out loud, without dressing it up.
I’m going on this trip feeling nauseous almost every day, sleeping 11–14 hours a day, and carrying a persistent 2–4 hour afternoon nap that basically eats the middle of my day. On top of that: the dull headache. The kind that doesn’t scream — it just refuses to leave.
So no, this isn’t “Tokyo at full power.”
This is Tokyo with pauses. Tokyo with shorter days. Tokyo with me listening to my body instead of trying to outwork it.
And that matters — because it shifts this trip from “bucket list before it’s too late” to something quieter and more honest: I’m going while I can, in the way I can.
Tokyo, version two: not escape — an intentional trip in an imperfect body
With that said, Tokyo isn’t a dramatic gesture for me. It’s a practical one.
It’s me choosing to keep living forward while the medical story unfolds in parallel.
Tokyo, for me, is a place where the world returns to scale through the camera. Where my job becomes simple again: walk, watch, frame, wait for the moment.
A face in a crowd. Light cutting across a street. A gesture that lasts half a second and then disappears.
And maybe that’s why scan language hits so hard: because it’s also about frames — what’s included, what’s measured, what “counts,” and what doesn’t.
A trial doesn’t describe your whole life. It describes what it measures.
A scan doesn’t describe your whole body. It describes what it sees in that slice, at that moment, with that method.
And the human mind does something similar. It frames what it can carry.
So I’m planning Tokyo the same way I’m learning to plan everything lately: with intention, with margin, and with kindness.
Not heroic days. Not forced productivity. Not a contest.
Just presence.
A few rules I’m setting for myself:
- Rest is part of the itinerary. Not failure — fuel.
- One anchor per day. Everything else is optional.
- Short sessions, not marathons. A good hour with a camera can be enough.
- Medication, hydration, and food aren’t afterthoughts. They’re the foundation.
- If nausea or a headache shows up, I don’t negotiate with it. I adjust. I slow down. I go back. I live to shoot tomorrow.
- Sleep isn’t “fixed” by force. If it shifts, I adapt the day instead of punishing myself for it.
Tokyo doesn’t require perfection. It requires presence.
Next steps: living and planning at the same time
Now that I’ve read the notes, there are two real next steps — and they can coexist.
1) Travel honestly, not heroically.
Go in the state I’m in, acknowledge the fatigue and nausea and headaches, and build the trip around reality instead of wishful thinking.
2) Ask the direct question about the growing lesion.
Because stable disease under trial criteria doesn’t erase the fact that one lesion grew — and I don’t want to pretend that detail doesn’t matter.
This is what I’m learning: living well right now means I can hold two truths without letting them tear each other apart.
I can go to Tokyo.
And I can advocate for the next step medically.
One is the art of continuing to live.
The other is the discipline of staying precise.
Both belong in the same life.
Letter To Research Trial Coordinator
Hi XXXXXXX,
I hope you’re well. After reviewing the research encounter note from my Feb 18 visit, I understand that I am classified as stable disease, because there is no progression of the target lesions on the tumour assessment sheet.
That said, the CT report notes the dominant segment 8 liver metastasis (along the resection margin) increased from 2.5 cm to 3.4 cm, while the other liver lesions are stable. Since this appears to be outside the target lesions used for the study assessment, I wanted to ask what options exist to address that one growing lesion independently of the trial, while continuing on protocol.
Could you please advise:
Does the study protocol allow local treatment of a non-target lesion that is enlarging (e.g., SBRT, ablation, embolization, or surgical resection) while I remain on the study drug?
If local treatment is allowed, are there any timing requirements (holding doses, washout period) or extra steps (e.g., MRI liver, referral process, sponsor approval)?
If local treatment is not permitted on protocol, can the team still make referrals for opinions (radiation oncology / interventional radiology / hepatobiliary surgery) so we understand feasibility and can plan ahead?
Would you recommend any additional imaging (such as a liver MRI) to better characterize the segment 8 lesion for local treatment planning?
My goal is simply to understand what’s possible for treating that one lesion, given the overall assessment is stable disease and the trial drug seems to be helping elsewhere.
Thank you very much,
Paul
Progress Notes
- documented in this encounter XXXXX XXXXX XXXXX - 18/02/2026 2:45 PM EST Formatting of this note is different from the original. MEDICAL ONCOLOGY - GI CLINIC - FOLLOW-UP Service of Dr. Chen Name: Paul Gordon Macpherson ? MRN: XXXXXX ? Date of Service: 18/02/26 The patient has a diagnosis of resected mCRC with liver mets - receiving treatment on GSK5764227 trial. Seen today pre-cycle 6. Oncology treatment outlined below: Oncology History Overview Note Sigmoid adenocarcinoma with liver lesions / MMRp / NGS negative May 2024 : near obstructing tumor : Sigmoid resection - pathology : T3N2a sigmoid adenocarcinoma G1 8 cm margin negative 5/24 LN + LVI July 2024 : liver biopsy confirmed liver metastasis "Neoadjuvant" FOLFOX x 15 cycles (until march 5, 2025) April 28, 2025 : Multilobar liver metastasis resection ( 13 liver lesions removed with negative margins) Oct 2025 : CT/TEP/IRM : Progression new liver mets + (3 in total) Dec 2025 : GSK5764227 trial INTERVAL HISTORY: I saw Paul Gordon Macpherson today in the GI Medical Oncology clinic. He is tolerating well the treatment. He has good appetite. There were no additional reported systemic symptoms. ECOG status:0 PHYSICAL EXAM: Wt Readings from Last 3 Encounters: 18/02/26 88 kg 04/02/26 89.2 kg 21/01/26 90.6 kg Patient was alert and oriented in no acute distress. Abdomen was soft, non-tender and non-distended. Cardiovascular exam showed RRR, normal S1 and S2, no murmurs, No JVD. Lungs were clear on auscultation, no wheezing, no crackles. There was no Peripheral edema or calf tenderness. LAB RESULTS Results from last 3 months Lab Units 18/02/26 1400 04/02/26 1401 21/01/26 1255 HEMOGLOBIN g/L 141 152 150 WBC AUTO 10*9/L 7.6 6.6 7.2 NEUTROS ABS 10*9/L 5.9 4.9 5.7 PLATELETS AUTO 10*9/L 233 239 220 Results from last 3 months Lab Units 18/02/26 1400 04/02/26 1401 21/01/26 1255 CREATININE umol/L 96 94 104 UHN POTASSIUM mmol/L 4.3 4.2 4.6 ALT U/L 20 25 24 AST U/L 28 26 25 ALK PHOS U/L 81 87 89 BILIRUBIN TOTAL umol/L 10 8 7 CALCIUM mmol/L 2.23 2.15 2.15* GLUCOSE mmol/L 5.9 5.6 8.0* MAGNESIUM mmol/L 0.83 0.89 0.84 ALBUMIN g/L 44 43 44 Tumour markers Results from last 3 months Lab Units 04/02/26 1401 21/01/26 1255 07/01/26 1458 CEA ug/L 71.1* 66.5* 57.9* CA 19 9 kU/L 44* 39* 38* RECENT IMAGING: CT Abdomen and Pelvis LIVER/BILIARY SYSTEM: A liver metastasis in the periphery of segment 8 along the resection margin measures 3.4 cm (series 5, image 94), previously 2.5 cm. The additional metastases have remained stable, for example, in the subcapsular segment 7 measuring 1 cm (series 5, image 94), and in segment 5/6 measuring 1.4 cm (series 5, image 117). Subcentimetre liver cysts are stable, for example in segment 7 (series 5, image 90). Cholecystectomy. No biliary dilatation. SPLEEN: Unremarkable. PANCREAS: Stable pancreatic body cystic lesion measuring 2.2 cm. ADRENAL GLANDS: Unremarkable. KIDNEYS and COLLECTING SYSTEMS: Stable left renal cortical cyst. LYMPH NODES: No enlarged lymph nodes. PELVIC ORGANS: Mildly enlarged prostate. The bladder is unremarkable. GASTROINTESTINAL TRACT, PERITONEUM and RETROPERITONEUM: No peritoneal nodules or ascites. No bowel obstruction. Unremarkable colonic anastomosis in the pelvis. VASCULAR: Patent major vessels. SOFT TISSUES and BONES: No aggressive osseous lesion. INFERIOR THORAX: CT chest reported separately. OPINION: Increased size of the dominant hepatic metastasis in segment 8. The additional liver metastases have remained stable. No definite extrahepatic disease. Stable pancreatic cystic lesion. CT Chest FINDINGS: MEDICAL DEVICES: Right Port-A-Cath with tip in the distal SVC. CHEST WALL AND THYROID: Stable calcified left thyroid nodule. LYMPH NODES: No enlarged thoracic lymph nodes. HEART AND MEDIASTINUM: Cardiac chambers and pericardium are normal. Stable coronary artery calcification. PLEURA: No pleural effusion or pleural thickening. AIRWAYS: The airways are patent. LUNGS: Stable biapical fibronodular scarring. Stable linear band atelectasis/scarring in the right lower lobe. Mild subpleural reticulations in both lower lobes are unchanged. There is a new 2 mm nodule centrally in the left upper lobe on image 29, series 9. BONES: No destructive bone lesions. UPPER ABDOMEN: Reported separately. IMPRESSION: A new 2 mm nodule centrally in the left upper lobe is nonspecific and requires surveillance on the next follow-up study. ASSESSMENT :The patient and plan was reviewed with the staff physician. Paul Gordon Macpherson is a 57 y.o. male being seen on 18/02/26 with a diagnosis of resected mCRC with liver mets - receiving treatment on GSK5764227 trial Plan : Reviewing the tumor assessment sheet, there is no progression of the target lesions; therefore, there is SD. Labs are ok to proceed with treatment We will see him back in 2 weeks. I did my best to anwser the patient and family's questions today. Thank you for letting me be a part of this patient's care. Sincerely, XXXX XXXX XXXXX MD , GI oncology fellow, On behalf of Dr XXXXX XXXX and Dr XXXX XXXX Medical Oncology - Gastrointestinal Malignancies Princess Margaret Cancer Centre