Radio Ga-Ga

TGIF!! It's funny how fridays have a meaning again, no radiation for two days! Three weeks down and one to go. This is starting to feel like going to work every day and that's a feeling I really don't miss right now. Even though being strapped down from my face for few minutes each day isn't that bad.. Only thing that sucks is the optimistic time-planning in the radiation deptartment. I've been to 15 treatments so far and I'm quite sure a maximum of 3-5 of those have been exactly at the given time. Either they're running late for some reason, sometimes early and a few times the place has been crowded because one of the radiation machines is broken. At one point this week two of them were out of service. With 5 radiation rooms and patients dropping in every 10min that can screw up a daily schedule quite badly! Also I've managed to get in a few minutes late (max 3min) a few times which means they pick the next one before me and I get to wait 10min. This also happens if you arrive at the exact minute you're supposed to get called in. Old people usually arrive like 30min in advance so I've lost my turn at least 3-4 times so far. At least I get to feel young in the waiting area, I think I've seen one person that can be categorized as the same generation as I am. Cancer isn't that popular among people in their 30's, weird huh?

Anyway, only side-effect I've felt is a soar throat. Both tubes! The trachea is in a constant state of feels-like-I'm-getting-a-flu and the esophagus is just short on lubricant. It hurts like hell when I swallow dry, hot, cold, coarse or acidic foods or drinks. It started some time last week and has been getting worse every day. So it's making eating and drinking somewhat restricted, maybe I can lose weight now? ;) (I wish!) Now that I think about it my skin has also been slightly reddish after the treatments but not anything like a sunburn.. yet! So not much left now. Every day I get in, wait for a few minutes to half an hour, get called in, take my shoes and shirt off, jump up on the motorized bed, get strapped down and get scanned and radiated. Takes about 5-10min once I'm in there! They also have to align me perfectly with my four tattoos and this takes some effort from the poor nurses who have to pull me back and forth on the bed. It helps a little bit that they have a sheet on a somewhat slippery surface, but still, I'm no lightweight. To make it easier for them I've quite well mastered the position I'm supposed to be in, Tuesday and Wednesday they didn't even have to touch me! I just found the exact position myself. They found it rather impressive. We're talking less than millimeter range here! But yeah, 6 treatments left and I'm a free man!

Here's a picture and a video of how the machine works:

Back to the oncology department!

It's a warm fuzzy feeling when you know that the entire contents of your ribcage will soon get bitch-slapped by ionizing beams of death.. I guess that's why I had a doctor's appointment first so they could explain how they do it? Well, at least I thought it was supposed to be a brief reassuring chat but I ended up spending 3h there! At first I did go for a brief chat and of course the usual crap where they listen to your heart and lungs even though I had recently had both spirometry and heart sonography and know those are in great shape, but I guess they have to do something to earn the 30€ I spend for each doctors visit. There is no such thing as free medicare..!

Anyway, then I hear I'm supposed to get x-rayed, measured and prepped for the radiation too. (And naturally another visit the blood-lab.) So I wait outside the X-ray room for a good 20min until I get called into a big spacious room with about five people ready to take me on. First they lay me down on a moving bed with the usual doughnut-shaped x-ray machine but this room had four lasers in the roof measuring me up on the bed. The nurses rock me back and forth and keep drawing on me with markers until they get me in a good position. Suddenly they attack me with a wet, rubbery asphyxation blanket and strap it down to the bed. (Sort of like this one: Neck Fixation) Apparently they need to make sure my chin and head do not move one millimeter when the radiation starts. In very short time the blanket started to shrink and harden and really pull my face down towards the bed. That was total sci-fi stuff! =) Now they have a fixation device moulded in my image to strap me down exactly like I was. On top of that they tattooed four dots on me for where the laser pointers had been. So I didn't manage to stay untattooed for the rest of my life after all.. They will take about one week to calculate the radiation dose with some physics geeks and try a simulation run next friday. The real radiotherapy starts on Monday (22/10).

Here's a slightly better picture of the facemask:

 

Ultrasound of music.. I mean my heart!

Oh yeah, the week was not over yet.. Monday: blood test, Tuesday: gastroscopy, Wednesday: (man I hate the spelling of that day) heart sonograph/ultrasound/ultrasonography! Yeah it's that thing they do to pregnant women with the gel and scanner thingy on the stomach. Only this was aimed at my heart. They measured every ventricle, artery, atrium and valve to make sure it's in tip-top condition. Took bloody 45min too! Why? Because the radiation will be hitting not only my tumor but also my heart, left lung, trachea and esophagus. The heart should be fine but I can get some immediate symptoms from the lung, throat and skin. Those symptoms include skin burning, heartburn (acid reflux) and "fake" pneumonia. So not real pneumonia but pretty much the same symptoms. But once again all symptoms are quite individual so you never know, I might just be compatible with radiation? ;)

Gastronomical findings?

Some things are, and should be, on a need-to-know-basis (at least in the movies they seem to have lots of that) and maybe that's good. When you get called to a procedure like gastroscopy it's really not good to read up about it too much and see what other people think. It builds up unnecessary anxiety. And for most people an experience like that can be quite traumatic I guess? So after reading up on it quite a lot I was a bit nervous that it would be as horrible as the lung endoscopy.. Well, it's not! Not even same ballpark! Sure you can find better things to do than puking air for 5min straight but this was just another quick stop at the docs office for me. I didn't even take the local anesthesia for this one. I came in, layed down on my left side on the bed, got a thickish (much thicker than the lung-tube) tube in my throat and tried to swallow it.. Then I started throwing up non-stop for a few minutes (which made easy access for the tube) and after a few biopsy claws had been in there, they pulled it out. I thanked for an interesting experience and walked to my car and drove home. Then I ate breakfast! Like a Boss! =)

Sure I had a bit of a sore throat afterwards, but the only thing I was interested in was the findings of the biopsy. They told me they would call me on Monday (8/10), I got the call on Thursday. No biggie, since I wasn't really that worried about it, but still kind of strange to keep me in the dark for over a week. Anyway, got the call and everything was fine as expected, so all this did was postpone the radiation for anther week. I might have some sort of chronic inflammation of the stomach wall but since I've never felt it or had any issues with it what so ever, who cares! I'm busy killing cancer!

The CAT is my PET

Stay back kids and gannies, daddy is going nuclear! Or at least I was, for a few hours. Went for a complete body scan again and man is it boring! Once they inject the radioactive isotope, you need to lie still for like 50min.. and you can't even read a book! Or play with your phone!! Aaargh! AD/HD kicks in after about 10min, so I'd say at 50min it's borderline torture. At least when you're done, you get to tightly sqeeze inside a huge tube and not move a muscle for another 30min! And all this while glowing like the skyline of Chernobyl of -86. But it's all for the good of my health so enough complaining.. Even the cannula went in on the first attempt. =)

Then I got some interesting results the day after (27/9). I already had a radiation therapy meeting set up for next week but -whooptidoo- change of plans! It seems my stomach wall has some issues with either the pills I've been eating (corticosteroids) or the cancer I've been having so that's what's next on the agenda of check-ups. It's unusually thick or swollen and needs to be checked for cancer just in case. Now how do they do that..? **drumroll and french horns** Esophagogastroduodenoscopy!! Or as us mortals prefer to call it, gastroscopy. Personally I feel like one endoscopy was quite enough and rather unenjoyable too (the lungs), but then again, better to be safe than sorry and it's all for the greater good and blaah blaah. So a little trouble in "paradise" after all. IF it really is lyphoma acting up, even though it's very unlikely, I'll be back on chemo by next week. If not, we can just call this a minor speed bump and radiation will be back on the schedule as planned. Oh and yeah, the tumor is quite tiny now

Edit: Wanted to add this picture here.. Seems suitable for the gastro. =)

Chemo 6 of 6 and Spiro V?

6th time's the charm? Hopefully yeah, and also quite probable judging from the previous check-up. Blood tests went smoothly and all the values have been close to identical every three weeks so it's looking like Mike 6-0 Chemo. The last visit at the day hospital was almost bitter-sweet, almost.. 99% of me never wants to see that place again EVER, but that 1% of me got used to it and it felt somehow safe to be there, knowing that I'm getting taken care of. Even if it means having a god-damned cannula stuck in my vein. (I really hate those things by now!) And also it's the only place I ever read more than 20 pages from a book in one session. Now I'm never going to finsh the three books I have going. Anyway, if everything goes as in Strömsö, I won't have to go back in a long time! (Never say never..)

And then there was spirometry! I've honestly lost count but I have a feeling this is my 5th time.. Could be 6th or 7th if we count the failed attempts and multiple tests per day? However, because I'm a responsible adult and I tend to learn from my mistakes I managed to pull a Britney (Ooops I did it again..) and miss my Monday morning appointment (17/9)! Since I did make it to my second dermatologist appointment (3/9) I guess they thought Monday mornings are fine now somehow..? Well they're not! So after another earfull of bullshit over the phone I got it rescheduled to Thursday 20/9. This time I managed to get there, only about 10min late, since I went to three different places before I was pointed in the right direction. The spirometry and diffusion capacity measurings were done at the allergies-department now. Funny how they seem to have those machines on every floor at TYKS. The good news in all this mess was that my values in capacity, peak flow, diffusion and everything else were all back to normal (89-105% of reference values) compared to the 50-60% readings taken back in May. Lung volume alone went up two litres! So things are really looking peachy! Next stop, PET + CT!!

Dermatologist, take 2.0

Wohoo I made it! 8.15 on Monday morning and on time! I would've NEVER accepted an appointment this early if it wasn't for me f***ing up last week, but guilt makes you do stupid things. But this time karma really got to bite me in the ass. I had to wait for at least 1h30min before I got to see anyone! I wake up at 7:30 on a Monday morning, drive half-asleep in chaotic, aggressive, crappy morning traffic, show up on time with my hat in my hand feeling ashamed for last week and this is what I get!! I think I got called in at around 9:50! Spank you very much! The best part is that all the rashes I was supposed to show the doctor had now disappeared and I felt kinda dumb (and royally pissed off) coming in there with nothing to show. Of course I do have about a million allergies and stuff so I had a long list of demands.. err suggestions on what I would like to have examined. But of course they can't start anything before all the other treatments are over so I'll have my prick-tests and such done in December some time (4 appointments!). Also the bite from the tick wasn't looking like anything was blooming in there so I guess the visit wasn't all for nothing.. Fun times.