Testimony – Episode 6: Small Doses/Små doser

Testimony Episode 6 — Small Doses
Episode 6 — Small Doses / Små doser
EN SV

Phase 1 had asked everything of the body at once: four weeks, four infusions, hours at a time in a curtained bed. What came after asked something different — four more doses, spread across four months, each one small enough to be over before it had properly begun. This episode covers that stretch: the consultation that set it in motion, the visits themselves, the disciplines that ran underneath all of it, and the holiday that landed, uninvited but not unwelcome, right in the middle.


A Friend in Need

Thursday, 16 November 2017 — appointment 10:00
Karolinska University Hospital, Solna

Dr. Sonnevi had moved. The lymphoma section had concentrated itself at Karolinska’s Solna campus — further from Huddinge, a longer journey, a different set of corridors to learn. I had the appointment card. I had the time. I had a plan.

Leave home at 07:00. Ten minutes on foot to Flemingsberg station. Pendeltåg to Odenplan, then a bus connection to Solna. Arrive with time to register, pay the visit fee at the cashier, find the right department. Simple enough, on paper.

I was at the station before 07:15. I looked at the departures screen.

Postponed.

I waited. The minutes moved. The screen updated.

Postponed again.

I watched my clock and the screen simultaneously now, the way you watch two things when both of them are telling you something you do not want to hear. The gap between where I was and where I needed to be was closing, minute by minute, on a platform in Flemingsberg in November.

A third postponement.

Three cancellations. The pendeltåg was not coming — not in any time that would get me to Odenplan, and from there to Solna, by ten. The whole connection had collapsed. I had to make a decision, and I had to make it now.

I opened my phone. Uber. I requested a car. I waited. No one came. The minutes continued moving. I stood outside the station near the bus stop, watching the road — and then I saw taxis passing. Ordinary taxis. Not the app, not the algorithm, just drivers with cars and the particular unhurried certainty of people who know these roads.

I stopped one.

I opened the door and sat in the back before I had fully decided to. I told the driver where I needed to go — Karolinska Universitetssjukhuset, Solna — and something of why. The appointment. The time. The three postponements on the board behind me.

He listened. And then, calmly — with the particular calm of someone who has heard urgent things before and knows that urgency is best answered quietly — he said:

“Do not worry. I will take you there on time.”

He had an accent I placed somewhere in Eastern Europe. He drove the way his words had sounded — steadily, without drama, with complete confidence in his own knowledge of the route. Twenty-four kilometres from Flemingsberg to Solna. And then, as we moved through the morning traffic, he said something else:

“You can ask SL to reimburse the taxi cost. I will give you the receipt — you can use it as proof.”

I had not known that. In the middle of everything — the worry, the clock, the body that had just spent weeks being treated and was now sitting in the back of a stranger’s taxi trying not to be late for the doctor who had overseen all of it — I had not known that SL had a reimbursement process for exactly this situation.

He knew. He told me. He gave me the receipt.

We arrived at Karolinska Solna with perhaps ten minutes before the hour. But arriving at the hospital was not the same as arriving at the right place. The new Karolinska building was still finding its final form — and the Lymphoma section had not yet moved into it. It remained in the old building, tucked behind corridors that did not announce themselves, that required you to know where you were going or risk losing minutes you did not have.

I moved as fast as I could without running. Through the entrance, reading signs, following the route I had tried to memorise — corridor, turn, corridor again — to registration, then the cashier, the visit fee paid, the paperwork done, and then finally the right waiting room, where I sat down and tried to bring my breathing back to something ordinary.

The wait lasted perhaps two minutes.

Dr. Sonnevi came to the door of the waiting room and called my name.

I stood up.

Later, I filed the SL claim online — carefully, in Swedish, the way I had learned to navigate Swedish systems: precisely, with all the documentation attached. I wrote what had happened: Pendeltåget hade inställt ca. 3 gånger, så för att inte jag kom försenad tog jag taxi. The fare was 989 kronor. The distance was 24 kilometres.

SL reimbursed me.

The driver had been right about that too.

Flemingsberg station, winter

Flemingsberg station, winter. Not necessarily the platform or direction of that particular morning — but the same cold, the same waiting.

The CT reviewed this day, taken after Phase 1’s four weekly doses, showed decreased size of the liver, spleen, and prostate — a partial response. The diagnosis behind all of it: extranodal MALT lymphoma involving the prostate, seminal vesicles, and bone marrow, stage IV. The decision made this day: continue with four more doses, given monthly.

Stage IV

Extranodalt MALT-lymfom, stadium IV. The words sat on the page of the Samordning note, next to my name, in the same plain clinical font as everything else. Stage four. I knew, in the way most people know, that higher numbers in cancer staging are supposed to mean worse. I did not yet know whether that was true here, or how true, or true in what sense.

So I did what I had already learned to do with everything else about this illness: I read.

The number itself, it turns out, describes geography more than it describes danger. In lymphoma staging, stage IV means the disease has been found in more than one place outside the lymph system — for me, the prostate, the seminal vesicles, the bone marrow. Three sites. That is what earns the number four. It says nothing, on its own, about how the disease behaves, how fast it moves, or how it answers to treatment.

And MALT lymphoma, the type in front of my own name, is not a fast-moving disease. It is rare — a small slice of all non-Hodgkin lymphomas — and it is characteristically slow, sometimes so slow it causes no symptoms at all until something else, some unrelated test, happens to notice it.

I found a chart from Sweden’s national lymphoma quality registry, the kind of document that exists specifically to answer the question I was asking. It explained something called relative survival: take people matched for age and sex, and ask what fraction of them would still be alive after five years even without any cancer at all — in the registry’s figure, 80%. Then look at what fraction of actual lymphoma patients were alive at that mark — 60%. Divide one by the other, and you get 75%: an estimate of survival specifically among people for whom the lymphoma, and nothing else, was the only thing that could take them.

I found more, beyond Sweden. A study following people with stage IV marginal zone lymphoma — the family MALT belongs to — put five-year survival at 84.5%, ten-year at 79.8%. The same study looked specifically at what role rituximab played in that outcome. Rituximab was the drug already in my own veins, already renamed on a hospital card as MabThera. And in a separate study of MALT lymphoma outcomes, lymphoma itself was found to be the cause of death in only about 4% of cases across ten years — most of what took people, in that data, had nothing to do with the disease I had just been diagnosed with.

None of this made the word four feel small. But it gave it a shape I could hold instead of one that only loomed. Stage IV was not a countdown. It was a location — three places instead of one — attached to a disease that, by every number I could find, was in no particular hurry, and that medicine already had real, working answers for.

I kept reading. It helped more than I expected it to.


Eight Chairs

The kallelse told you where to go, but paper directions and a real building are two different things.

Cashier first, to register the visit. Then the question of where, exactly, Dagvård was hiding — fifth floor, they said. The lift. Then the corridors — long, the particular kind of hospital corridor that has too many doors and not enough of them labeled, each one closed, none of them announcing which side of it belonged to you. I walked past nurses moving with purpose in both directions, and for a moment I didn’t know which one, if any, was mine.

Then a nurse called my name.

She led me into the room, and the room itself was the first surprise. Nothing like Huddinge. No curtains dividing the space into small private worlds — here it was open, eight chairs arranged across it, each one adjustable, somewhere between a chair and a bed depending on what a body needed that day. Just a little wider than I was. I sat down, found the angle that felt right, and she left me there to wait.

Karolinska Solna corridor

Karolinska Solna, the corridor between the entrance and the room — the one with too many doors and not enough of them labeled.

When she came back, she came back complete — a full cart, every instrument and medicine already gathered, nothing left to fetch twice.

First, blood. A sample, the way it always started. And then the part I still find strange to describe: the treatment itself. A small needle. MabThera, into the abdomen. A few seconds, start to finish.

A few seconds. Where Huddinge had asked six hours of me — the drip, the curtain, the shaking, the blanket — this asked six months’ worth. I sat with that contrast every time it happened, and it never stopped feeling strange.

They kept me a while after, watching for any reaction. There wasn’t one. Then I could go.

Back through the same corridors, the same lift, out through the main entrance — and there, close enough to see from the doors, the bus stop. Some visits it took me only a few minutes to catch one. Other times three or four times that, standing in a Swedish winter that did not care how quick the treatment inside had been.

Dose 1 of 4: 21 Nov 2017, subcutaneous, left abdomen (nurse: Charlotta Holmgren). Dose 2: 19 Dec 2017, right abdomen (Siv Södergren). Dose 3: 16 Jan 2018, right abdomen (Sara Mosell). Dose 4: 13 Feb 2018, right abdomen (Anna Bronner) — plan noted: awaiting evaluation with X-ray, then follow-up at the hematology clinic.
Dagvård A15b schedule card

The actual Dagvård A15b schedule card — 19 Dec, 16 Jan, 13 Feb, all marked MabThera.


Christmas, For Real

We decided, that year, to do Christmas properly — more than we’d ever done Thanksgiving. Not a smaller version, scaled down to match however I was feeling. A real one.

The tree was small — small enough for a shelf, not a room — but it was dressed the way a full-sized one would be: red and gold ornaments, ribbon, a string of small wrapped presents tucked in among the branches themselves, as if even the tree needed something to unwrap.

Underneath and around it, the real presents waited. An Electrolux air purifier, still boxed. A body scale from Beurer — the same maker as the HealthManager apparatus that had been quietly logging my weight and blood pressure every morning since August. A hand vacuum. A new rice cooker. And, further back on the shelf, wrapped in its own paper year after year: the yearly surprise from Byggplast, the same colleagues who had sent flowers to the apartment during Phase 1 without waiting to be asked. Some things, apparently, you can count on.

To the side, past the cards standing upright on the shelf: a bottle of Offley and a bottle of Jack Daniel’s, waiting for later.

Four days earlier I’d had the second of four subcutaneous doses. In four weeks I’d have the third. In between, none of that — just a tree that fit on a shelf, dressed like it didn’t, and a room that had decided, deliberately, to celebrate.

Christmas tree and presents

The tree, the presents, the Electrolux, the Beurer scale, the yearly Byggplast surprise, and the Offley and Jack Daniel’s waiting for later.


The Weight Coming Back

Fifty-nine kilograms. Early September, mid-Phase 1. That number is where the disease and the treatment together had dragged me, and I remember looking at it on the scale and understanding, for the first time in purely physical terms, what was being taken from me.

I decided it would not keep taking.

The walking was one front. The plate was the other, and I fought on it every day, three times a day, with the same seriousness I’d have given an actual enemy. FatSecret logged every gram — nothing eaten without being weighed, nothing weighed without being entered, nothing entered without being checked against a line I would not let myself fall beneath: 2,500 calories, minimum, protein and vitamins and minerals accounted for like ammunition counted before a battle.

Weighed breakfast porridge

Breakfast, weighed and eaten on purpose — the same discipline as Ep.5’s Urtekram ritual, carried into Phase 2.

New Year’s Eve, 2017. Between the second dose and the third. I ate like it was work, because it was: Marie biscuits and banana and honey to start the day, then peanuts and cheese and bread and fries and kebab through the afternoon, and at dinner, alongside the potatoes and more kebab, a scoop of Star Nutrition Supreme Mass — a gainer’s supplement, 461 calories and close to 29 grams of protein, taken the way you’d take medicine, because in every sense that mattered, it was. The day closed at 3,481 calories. Almost a thousand over the floor. I did not eat that much because I was hungry. I ate that much because I refused to lose the ground I’d already taken back.

And the scale kept score. By the 18th of December — three days before that plate — it read 68.9 kilograms. Not 59 anymore. At 175 centimetres, 65 kilograms was supposed to be my number, the BMI-ideal line I was meant to sit on. I had gone almost four kilograms past it.

I won’t call that fantastic. It wasn’t a clean recovery to some perfect target — it was something messier and more honest than that: nearly eleven kilograms fought back from the bottom, and then some, not because I was chasing a number past 65 on purpose, but because worry doesn’t calculate precisely. Under treatment, under the pressure of not knowing, I ate the way you eat when you are afraid of ever seeing 59 again. The uncertainty inside me pushed as hard as the discipline did. Together, they overshot.

Weight chart, 59.0kg to 68.9kg

Weight logged daily via Beurer HealthManager — the actual climb from 59.0 kg to 68.9 kg, Aug–Dec 2017.

Twice a day, still, the same measurements underneath it all — blood pressure, pulse — because a war you stop measuring is a war you’ve already started losing. The apparatus didn’t know it was a holiday, and it didn’t know about ideal weights either. It just kept asking, and by December, whatever the number said, it was no longer the number that had frightened me in September.


Phase 2, in Full

Cross-referencing the clinical notes against the lab and treatment record gives the complete shape of these three months:

DateTimeEvent
16 Nov 201710:00A Friend in Need — CT reviewed (PR), decision to continue 4 more doses monthly
21 Nov 201714:44Dose 1 of 4 — subcutaneous, left abdomen
27 Nov 2017—Lab check
19 Dec 201714:07Dose 2 of 4 — subcutaneous, right abdomen
22 Dec 2017—Lab check
25 Dec 2017—Christmas Day
31 Dec 2017—New Year’s Eve
16 Jan 201813:28Dose 3 of 4 — subcutaneous, right abdomen
22 Jan 2018—Lab check
29 Jan 2018—Lab check
13 Feb 201813:48Dose 4 of 4 — final dose. Plan: await X-ray evaluation, then hematology follow-up

Eight doses in total, four weekly and four monthly, closed out on 13 February 2018 — waiting, now, on what the next scan would show.


Read next: Episode 7 — coming soon.

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