There, wham, kablam, the worst is over. This weekend the last of the junk has been pumped into my veins, and the last pills were taken this morning. I’m not done yet - I do have 3 weeks of radiotherapy to go still - but it feels like it’s over. In three weeks time I’ll have an immune system. My heart will start behaving again. My hair will come back, and I’ll be able to sit in the sun for longer than ten minutes without burning up like a Bram Stoker phantasm. I can take bit of fatigue and skin irritation from the radiotherapy.
My unique mix of good- and bad-luck wouldn’t be mine, however, if that last round had gone off without a hitch. So plant yourself firmly in your seat as I tell you how I’m still very attached to my right arm. Both literally and figuratively.
The Friday morning started as it did every three weeks with an early alarm, and a slew of tablets to take. With much reluctance I crawled out of bed and drove myself on with the thought of being back outside with the sun shining off my cue-ball and the worst part over. So I got on my bike to the hospital, took the lift up to the fourth floor and took my place in my trusty seat. The IV was put in without problems and; as always; checked to be properly in my vein. You don’t want the chemo rubbish in the tissue outside your veins after all…
Everything was going as usual, and the first of the three meds was in. I felt relatively fine, but I was counting down the minutes until I’d be done. The second - and most unpleasant - round was almost in. Just some remnants left in the pipe and I’d be two down - one to go. Then I spotted some nice deep orange streaks in my right biceps. The same colour as the doxorubicine. I called the nurse over quickly, knowing this wasn’t supposed to happen, and one look at her face told me what I already expected: this was not good. This rubbish isn’t good when it goes neatly into your veins, but when it goes outside them and ends up in your tissue, that’s when nasty things can happen. The doxorubicine was the worst of the three drugs this could have happened with. The oncologist had warned me of this and I knew what the worst case scenario was. Enough tissue damage to lose the arm. Of course this had to happen to me when I was so close to being done.
A physician was immediately called to start the protocol for when this happens. I was given an icepack to put on my arm, and medication used to neutralise the damage was mixed up in the hospital pharmacy. I decided to call my dad. I was calm at the time but a bit of support was most welcome at the time. Luckily he got to the hospital quickly.
After having been transported to a different room and being examined by the on-call doctor, an oncologist called Sushi, and load of worried glances by nurses the medication and a plastic surgeon arrived. The pretty colours had gone from my arm by now, and it didn’t hurt either. After a short examination by the plastic surgeon he told me I’d been lucky. He’d seen this happen before, and it would have looked drastically different now had I not been as lucky. “Follow the rest of the protocol to be sure, but it looks like you got lucky.” was the best thing I’d heard that day. That protocol did mean that I would have to be hooked up to the same IV (that wasn’t taken out) for two hours whilst the stuff (dexametosocantrememberine) was pumped into my arm. They wanted to keep me in the hospital for three days, but after my best puppy-dog eyes aimed at the oncologist and head nurse I was sent home with a well wrapped up IV still in my arm. As long as I’d be back the following two days. Oh, and I did have to finish my chemo as well… So there I was, an IV in both arms, cosy in my hospital bed. I guess it could’ve been worse.
That whole ordeal is over by now, the only remnant being a bruised crook of my elbow. Just my type of luck: massive bad luck followed up by enough good luck to have it turn out ok with a story as the only permanent reminder.
After my short update last time this will be a bit more of a bible-text since I’ve been a little busier this time. Bombarding someone with enough radiation that they have to keep the technicians safe with a meter thick concrete wall takes some finesse and preparation. This too I’ve got to experience by now.
It started with a consult with the radiotherapist Dr. Chin. He explained to me why and where we were irradiating. Even though my scan looked brilliant, and Dr. Brouwer my oncologist was “extremely pleased” with how the treatment had taken they decided to irradiate. Why? The same reason I got those last two round of chemo, the maximum allowed dose. Because T-Cell lymphoma’s are nasty little buggers, and we want to make sure it’s properly exterminated. Sounds like a decent plan doesn’t it?
Dr. Chin made a nice little drawing and explained to me how it all works. I would be put on a table with two braces above my head to hold my arms. An X-ray will be taken before each round of radiation to make sure I’m in the correct position. That will be followed up by lighting me up with a targeted high-dose X-ray. The machine rotates around and does that from a few different angles, making sure the beam intersects only in the part of me that needs the radiation. This is to make sure the full dose is only delivered where it’s needed (under my right arm). Then I’ll be back outside in 15-20 minutes without having felt a thing. Side-effects should be mild given the dose, I’ll most likely end up with some fatigue and irritated skin. The skin won’t blistered or be damaged, but it will be unpleasant. I’ll have to go in every weekday for three weeks and then I’ll be done. I’m starting the 19th of June, which means it will all be over by the 9th of July.
An image was needed to figure out where exactly I needed to be irradiated, so I was taken to the basement straight after my consult to capture it. I was put on a (slightly uncomfortable) table with my arms above my head and a pretty set of laser cross-hairs on my chest. My biopsy scar was taped up with strands of copper wire (visible as a point of reference on the scan) and little stickers with lead in them were put on my sternum and sides in the spots the laser beams crossed to allow me to be positioned in the same way for the radiotherapy. I was put through the CT-scan in 5 minutes, and my stickers were replaced by four small tattoos and two stickers on my arm.
The CT-scan will be used by the radiologist and physicist to work out how to program the machine to irradiate me accurately and make sure I don’t catch fire or any such nonsense. They’ll double and triple check it so I don’t have to be afraid of any errors.
After the radiotherapy I’ll be joining my parents for a trip to Spain and some well-deserved rest. My first check-up scan is scheduled for the 1st of August with the results in on the 5th. That’ll be a tense day, but I have faith all will be well. I’ll have to stay in the hospital for the day on the first thanks to my allergy for the contrast fluid, but eh, we can deal with that.
So, nice, all these exciting (and perhaps long-winded) stories of mine. But uhm, how’s it going?
I’m alright. The side-effects are still there, the fatigue is still there. But at the same time I know it’ll only get better from here on out, and I’m about ready to start my second chance.
During my treatment I’ve met my fair share of people that did not get that second chance. And I don’t intend to ever forget how lucky I am.