A brief layman’s but technical explanantion#

The way all this works has always seemed like science fiction to me, so I’ll try to describe it from my layman’s perspective. A PET scan uses the fact that cancer lesions are very metabolically active and absorb large amounts of glucose from the blood. For the scan, a special glucose, which is mildly radioactive, is injected intravenously into the patient, and on the final scan, the parts of the body that have absorbed it glow nicely and clearly. It’s then easy to see where lymphoma metastases have formed in the body. And all this works just by making the patient a little bit radioactive. Medical magic.

How it went down#

And now, something about how it all works practically from a patient’s perspective. I first received an SMS with the time I needed to report to the PET center (the hospital primarily communicates with me via SMS). Upon arrival, I just checked in at the reception, and after a while in the waiting room, a nurse came for me and led me to my room. The first time, my boyfriend came with me for moral support. The room was small, just a bed, an armchair, and that’s pretty much it. The nurse soon returned and inserted the IV into my left arm (they put it in the crook of the elbow, so not exactly a comfortable spot if you want to move your arm) and also kicked out my boyfriend, saying it would be dangerous for him later due to radiation, so we said goodbye, and I stayed there alone.

The nurse then asked me a lot of questions. I wasn’t allowed to have any metal parts or jewelry on my clothes or on myself. She asked me if I’d ever had a biopsy, if I smoked or drank, if I’d been sick recently, just everything possible that would be important for them when evaluating the scan results. After a while, another nurse came with a strange machine on wheels, which was used to mix and deliver the radioactive glucose into my vein. The machine buzzed for a bit, the nurses hid behind the door, and when it was all done, they told me I would lie there for 45 minutes without moving at all and that they would come for me later. I asked them to dim the lights and bring me a blanket because the PET center is in the basement, and it was really cold there. They were kind and agreed, so I tried for the entire forty-five minutes not to think about having an IV in my arm, as it was actually the first time I’d ever had one, and I wasn’t used to it yet. But I was there relatively early in the morning, so it didn’t take long for me to fall asleep, at least for a little bit. After a while, a nurse came with a cup of water, saying I had to drink it in 10 minutes and then go to the bathroom before the scan itself.

When I finally got my turn, the nurse led me into the scanner room. I’d never even been in a regular CT scan before, but this was kind of how I imagined it. It was a round and quite narrow cylinder, inside which there was a movable bench I laid on. The doctor put a cushion under my head and knees and also told me to rest my arms on a structure behind my head. She adjusted my bench so I was exactly in the middle, covered me with a blanket again, and then just told me to relax, lie still, and not move at all, and that it should take about half an hour. And then she went to hide in the next room.

What I found funny was that on the top of the cylinder, there was a small rectangular mirror where the image of the name “Nohavica”, a pretty famous Czech singer, on my T-shirt fit perfectly. But immediately after that, the bench started moving, so I stopped looking around and just laid there. They left the IV in my arm because they planned to give me contrast for a CT scan after the PET scan, but due to its placement and the fact that my arms were slightly bent at the elbows above my head, it was even more uncomfortable than when I was just lying on the bed in the room before. I was also surprised that the machine was completely silent, except for the sounds of the hydraulics moving the bench. But the whole thing passed quite quickly and was calming in a way.

When the PET scan finished, the doctor came back and warned me about the side effects of the contrast for the CT scan: a metallic taste in my mouth and a feeling of intense heat, especially in my ears and also in my groin, where people often feel like they’ve wet themselves. This second scan was even faster, just a few minutes, because the contrast works very quickly. It was a really strange feeling. I was a bit scared of what was happening to me, but it ended as quickly as it began. And then the doctor pulled me out of the cylinder, finally removed the IV, and I could leave. My partner was waiting for me at the reception, helped me tie my shoes, and we finally went home. The nurse had warned me beforehand that I would be slightly radioactive for about a day, so I should stay away from pregnant women and small children. Just to be safe, I kept my distance from everyone.

A double set of results#

But that wasn’t quite the end of my first PET scan. Just a few days later, the doctor called me to say that the scan hadn’t been successful and that we’d have to try again in a few days. The reason was brown fat. It’s a special type of fat found primarily in small children and generally younger people, and it serves to warm them in winter (bears, for example, have a lot of it for hibernation). In adolescents my age, it usually goes away, but apparently I haven’t fully grown up and gotten rid of it yet. Brown fat is also highly metabolically active, and because it’s almost everywhere on the body, it meant that my entire PET scan glowed, and apparently you couldn’t see at all what we were trying to find out. So the doctor told me that before the next scan, which would be in a few days, I should go to the pharmacy for a beta-blocker (specifically a drug called Propranolol), a pill that should suppress the metabolic activity of this fat. The second scan, she said, was beautifully readable.

So then, I could finally learn the stage of my lymphoma. The doctor explained that the stages for this type of cancer don’t make that much of a difference. Hodgkin lymphoma of both stage two and stage four are treated essentially the same way. The reason is that blood cancer very easily and quickly metastasizes to other parts of the body, but because it’s the Hodgkin variant, it responds very well to treatment at every stage, so it doesn’t matter much how far it has actually spread. My scan showed that I primarily have lesions in my neck, where I found the original lump, but there are also many in my chest, and one small lesion is just above my liver. Because of that last one, they had to diagnose me with Stage 3 according to the rules. And based on that, I learned that I would have chemotherapy treatment, with the ABVD regimen, which I’ll definitely elaborate on sometime later.

Pharmacy and blood tests#

These two stops are usually the first ones I make on my chemo day, starting from half past eight in the morning. I need to go to the pharmacy for medicine without which I would endure this day much worse. For now, it’s probably enough to just know what I usually get for there on this day:

• Akynzeo — One tablet that helps with chemotherapy-induced nausea. There’s really only one in the entire large package, so it’s clearly very important (and would also be expensive if the Norwegian state didn’t finance it for me).
• Dexamethasone — Steroids (specifically glucocorticoids) that help the body regenerate faster. When I first took them, they gave me a proper energy boost, but since then, I haven’t felt any significant pick-me-up, so they’re probably working more in the background now. They also help with nausea.
• Zoladex — As I mentioned above, the gynecologist and I agreed that it would be best to induce artificial menopause during treatment, which this injection ensures. I get it every four weeks. However, due to misunderstandings and also the fact that I’m not a Norwegian citizen, I unfortunately have to pay for it myself, which is very expensive. But maybe I’ll still manage to resolve it and hopefully get my money back.

I’d also like to mention that I don’t remember a single day when I didn’t have to deal with some system issues at the pharmacy. It seems the pharmacists always have a different problem, usually it’s that they can’t see me in the system, they don’t see my prescriptions from doctors, or they don’t like that I don’t have a Norwegian ID and have to call the oncology to sort it out among themselves. The longest it took me was about two hours before they were able to give me the medication, on average, it can be about 25 minutes. This is unfortunately probably the price I pay for deciding to do all this in Norway. But I’ve slowly gotten used to that too.

Next, blood tests always await me, which are relatively simple compared to the pharmacy. Their station is right next to oncology. You just go in, take a waiting ticket, and when your number comes up, you go to the nurse in the cubicle. The waiting time seems random, it can take anywhere from five minutes to a good 45 minutes, and it’s very hard to estimate how long it will be this time. The blood draw itself is quick, though. The nurses are kind, they’re usually gentle with the needle, and maybe I’ve just gotten used to it, but it hardly hurts anymore. I don’t even have a problem watching what the nurse is doing once she inserts the needle into the vein (I still don’t like that part). I think my curiosity is one of the main weapons I’ve learned to use as a counterweight to the fear of everything the nurses and doctors do to me.

A chat with the doctor and the wait for the afternoon stress#

Around ten o’clock, I then go to the doctor’s office, where we discuss how I’ve been doing for the past two weeks, whether anything is bothering me, how unpleasant the side effects were, and if anything can be done about them. I usually prepare a few questions, so the length of the consultation also depends on that. Before, I trusted myself to remember my questions, but I soon found out that my memory wasn’t serving me very well (which, by the way, is one of the long-proven side effects of chemo), so now I write them down in Keep, along with the doctor’s answers.

The consultation usually calms me down a lot. The doctor is always kind and very understanding, and she won’t let me leave until she’s sure she’s answered all my questions. When she gets the blood test results, she explains what they found, focusing mostly on white blood cell levels and other indicators that I still don’t fully understand. When everything is in order, she orders my chemo cocktail for the day, which is mixed at the hospital pharmacy, so I usually have a few hours until it’s ready.

That’s usually when my partner and I meet up and go somewhere for lunch. With Norwegian prices, it’s not a cheap pastime, but around lunchtime, we both usually start to feel more stressed, so we sacrifice a few krones for a peaceful lunch we don’t have to cook ourselves. At this point, I also take the medications I got at the pharmacy earlier. At first, we used to get boxed meals from the hospital canteen, but after three months of negative association, just the noodles in a box started to make me feel nauseous, so last time we went to a different canteen a few buildings away. It’s a bit more expensive, but they have fresh and different food every time. The burrito with arugula leaves and various dips was a nice change last time, and at least I didn’t feel sick right after lunch.

Time for the infusion#

Around one o’clock, we finally move to the chemotherapy department of my oncology, where we usually spend the rest of the day, sometimes even until five. I always check in at the reception first, we spend a short time in the waiting room, but soon a nurse comes for us. I think it’s because I always have my partner with me, or because we don’t speak Norwegian, but they always lead us into a private room (only once was I sent to the hallway with other patients, where my partner couldn’t stay, so we wouldn’t disturb them). In the room, a comfortable armchair awaits me, from which I usually don’t move except when I need to use the restroom, as thorough hydration is really very important on this day. Usually, however, as soon as I enter this room, I start to feel nauseous. Even though I know it only comes from associations in my head, there’s unfortunately not much I can do about it. Last time, I asked the doctor if anything could be done about this anticipatory nausea, so she prescribed Valium, an anti-anxiety pill. I feel like it didn’t work much, but I’ll keep trying.

The nurse then inserts the IV again. Chemo is toxic to the vein where the infusion is given, so I alternate arms each time, left one time and then right the next. The nurses here are usually skilled, they put the IV in my forearm near my wrist, which allows me to move my arm much more easily than with the PET scan. They usually succeed on the first try without problems; out of eight infusions, the nurse only had to try multiple times twice. I also appreciate that they always connect a saline solution for extra hydration, which is really helpful.

After about another hour, the mixed chemo finally arrives. For the first two months, I had the full ABVD dose, meaning Adriamycin (more commonly called Doxorubicin), Bleomycin, Vinblastine, and Dacarbazine. Each of them has different side effects, but for simplicity, I’ll only mention those that manifest directly on this day.

• Doxorubicin is red (which is also why I can’t drink red-colored drinks like cranberry juice anymore) and, among other things, causes terrible mouth sores, which I learned to fight by chewing ice during the infusion after getting approval from my doctor. This prevents it from acting in my mouth and jaw. Now, ice automatically makes me sick, but the sores without it were unbearable. The first time, I couldn’t chew food at all for about four days, and even drinking was problematic, so it’s a pretty good sacrifice to make.
• Bleomycin causes lung toxicity and also flu-like symptoms, so they had to give me Paracetamol to lessen the fever. After two months of treatment and a great interim PET scan, they thankfully discontinued Bleomycin for me, so since then, I’ve only been on the AVD regimen, which still isn’t a walk in the park, but I think it’s definitely better.
• Vinblastine doesn’t do anything special on the day of the infusion, but it’s primarily responsible for hair loss. With other cancers, this can be fought with cooling caps, but my doctor didn’t approve that for me because the cap would prevent it from acting on the scalp, and since lymphoma is classified as a blood cancer, it’s necessary for Vinblastine to get everywhere.
• Dacarbazine is the last of the substances in my chemical cocktail and has the largest volume because it’s toxic to veins and can really hurt like crazy during the infusion, so they mix it with saline solution to make it less concentrated. Despite that, I’ve gradually had to reduce the infusion speed from the usual 1000 ml/h to the current 300 ml/h, which in practice means we usually sit there for a good two hours longer than originally planned. It’s also important to keep the arm warm during this substance so the veins are more dilated. The nurses always give me a warming blanket to wrap my arm in. It still hurts sometimes, but it’s much better. Unfortunately, my veins are apparently too weak.

All these substances are administered sequentially in the order I described, and mainly because of the last one, it can really take a long time. After several hours of sitting in the hospital, with the unpleasant smell of hospital laundry and disinfectant that I quickly associated with nausea, I always can’t wait for the infusion to end. Luckily, my partner sits there with me the whole time, and we usually chat or watch videos or a TV series, so time passes a bit faster. The very end is then quick, the nurse pulls out my IV again, and we can go home right away.

In the evening, I usually go to sleep very early, sometimes around nine, and I can sleep for more than 12 hours that night. Tough days await me right after, which I dedicate to relaxing (as much as possible), distracting myself from the ever-present nausea, and newly, writing these posts. I think this helps me a lot to escape boredom, nothingness and the feeling that everything is wrong with me. Instead I dedicate myself to some creative activity when I have the strength for it.