next up in my cancer journey is radiation! but before that can happen i had to go to the hospital for something called ‘radiation simulation’. i have been wanting to share my experience of this day for over a week now but haven’t had the courage. it was just a really dreadful day from start to finish. after a nice coffee date with the girls at our local branch of the leukemia & lymphoma society, i decided today is the day i wanted to share exactly how the day went! my apologies in advance… this is going to be a long one!
i started the simulation day by needing an IV in my arm for the CT scan contrast. i always prefer my right arm to be used for any and all blood work/IV’s. my left arm is super sensitive because of previous surgeries i’ve had on it. well, the nurse tried her hardest to use my right arm and after a few tries was unable to get the vein to cooperate. this is mainly due to the fact that I had to fast prior to my appointment…. that included water so my already tiny veins were even harder to “find”. so then she had to call a different nurse who was “more experienced” at accessing difficult veins. she was able to, but it hurt like a you know what. so, after that half hour of torture I went back to the little room where the nurse was giving my husband and i the run down for the day. shortly after i sat down i couldn’t stop the tears from streaming down my face. mainly out of overall frustration, pain and just flat out not wanting to be there. i’ve learned you CANNOT cry in that place because i was swarmed by multiple nurses asking repeatedly if 1. I was ok 2. if i was getting the proper support at home 3. if i wanted to talk to a counselor. like, i’m sorry… can’t a person just cry?! am i really the first person to cry ‘just because’?! & don’t they know it only makes it worse when you’re feeling upset and people keep asking if you’re ok?? i wanted to say “not for nothing but i was just poked 6 different times trying to stick an IV in… I’M MAD!!!!!!!!!!!!!!!!!! but instead i said i was fine and was just aggravated. I think they believed me.
next, i went into the simulation room to learn how to do the breathing exercises! since the area that needs to be radiated is close to my lungs and heart they have a new technique where they hook you up to a machine and have the patient hold their breath while they radiate. this apparently causes your vital organs to “move out of the way” to eliminate some of the long term risks associated with radiation. the machine is super uncomfortable… it’s this huge mouth piece that’s attached to a long tube and pushes REALLY hard on your gums. i also had to wear goggles that allowed me to see the computer screen. every time it turned green I had to take a deep breath and hold it as long as possible… the goal was to hold it for 30 seconds each time. i had to practice this so many times… my guess is about 50. keep in mind during this process I had to lay as still has possible and hold on to these poles that are attached to the table i was laying on…. so that meant I was stretching my arm that has the IV needle in it for an extended period of time and it was SUPER painful… but I couldn’t even flinch. so all the while i’m thinking “why the hell is this IV needle in me if we are not doing the cat scan first? what is the point?” “is my cat scan about to happen?” “WHAT IS GOING ON?!??!” so, I am doing my breathing exercises in silence getting more and more agitated. The nurses were nice-ish… but didn’t really talk to me much… so this whole process was done in pretty much silence… in a freezing room and all i had on were pants!!! i did have a gown on but they had to open it in order to make marks in the center of my body to make sure i was as straight as possible. very awkward.
ok, so the 45 minutes of learning how to do the breathing machine was over… next was making the mask. i had to sit up and then lay back down on what felt like a pillow that they sprayed with a water like substance so it was wet and cold…. the room was already freezing so i had to lay on basically a wet pillow that was molding to the shape of my body. while that was happening they kept shifting me an inch here, then an inch there…. To make sure I was perfectly even on the table… right down the middle. once they FINALLY achieved that, they marked my body with sharpie in the middle of my neck and chest. then they took this large piece of what looked like a blanket but was really the mask and slapped it on my face and head… they quickly opened a spot over my eyes and mouth and the three of them began molding it all around my head. Spraying it with that same water bottle… pushing and tugging to make sure it was tightly wrapped around my head. i had to remain perfectly still during all of this, IV arm was obviously throbbing. this process took about 20 minutes. then the fun part! i had to lay there perfectly still for a half hour while the mask dried. in silence… the nurses weren’t in there and even if they were I wouldn’t have been able to speak because the mask had to set into place. so, I just laid there FREEZING… i kept counting to 60 trying to track the minutes… but eventually lost track of where I was and got even further annoyed. once that was FINALLY over they took the mask off and what little hair i have on my head was now sticking up in every direction possible and was wet in the back from the mask, which was really super adorable. the nurse led me to a ‘gowned waiting area’ which consists of a bunch of patients waiting in gowns… she told me it would be about an hour for the mask to completely dry and then I would get brought back for my scan. keep in mind I am fasting and haven’t been able to eat anything or drink.. so at this point I’m starving… it was about 11:00.
2 HOURS pass and they finally came to get me and at this point I was ready to snap out and told the nurse that…. she informed me that technically my scan wasn’t scheduled until 2:00 (which was news to me) and that they were actually taking me back early… at this point there was no sense in arguing but I told her that no one ever told me that… and if that was actually the case, WHY did I have to get here so early?? it made no sense and I think the she may have been fibbing a bit, but whatever. so, I am now in the scan room… they put the mask on that i just made earlier and clamped it on to my face as tight as possible… that was fun! then they put the breathing tube in… that was even more fun! then the goggles and I had to lay there and practice radiation a few more times. DIDN’T I ALREADY DO THIS?! yes, but I had to do it again. (keep in mind at this point i was wishing my iv arm would just fall off because it hurt sooooooo baaaaaaaad.) so, we played radiation and the mouth piece was really starting to irritate my gums above my front teeth… just because of all the pressure put on them… so that was now joining the things that hurt! also, I was drooling from the mouth piece which is SUCH a disgusting feeling…. not only that but I couldn’t wipe it away because my arms were locked in place!!!! so i had a wet face from my own spit and had to lay there in it for much longer than i would have liked.
once that hell was over it was time for the cat scan… FINALLY! they injected the dye which felt super not pleasant because of how sore the vein was… and then in typical fashion it makes you feel like you wet yourself… which was fun. wet face, wet pants feeling… good times! once that was finally over they didn’t take the IV needle out because apparently a “nurse” had to do it…. i wanted to say “i’m sorry, AREN’T YOU A NURSE??!!??!?!” but considering they already think i’m hysterical, I refrained.
next it was time for my tattoos… which i didn’t know exactly what this entailed… i’m aggravated that i didn’t do my research because going into it blind was not a smart decision. they marked me with dye in 6 places. one by each arm pit, one in the middle of my chest and 3 further down my abdomen area… and then they took some sort of stabby needle instrument and pierced each ink spot!!!!! IT HURT!!!!!!!!!! as if the day wasn’t hell enough.
let’s recap. at this point i am famished, feel slightly violated, the damn IV is still in my arm!!!!!!!! my gums now hurt, my neck is stiff from being locked in place for so long… i was a mess. but, i finally had the iv removed… was able to get food in the hospital cafeteria and all was right with the world…. kind of.
I left that hellish day with a few thoughts…
1. why did I have to get the IV in first thing if they weren’t going to access it until the very end? couldn’t they have done that during the 2 HOURS i had to wait for the CT scan? it served absolutely no purpose up until that point and only made the simulation that much worse because it was throbbing the entire time.
2. why couldn’t I put my shirt back on if I had to wait for 2 hours in the gowned waiting area? i could have at least been slightly more comfortable. sitting in a gigantic, uncomfortable hospital gown was not fun.
3. the nurse should have given me a better timeline of the day initially. if i was told i had to wait 2 hours from the beginning, it would have helped with how irritated I felt. probably.
now it is over… my vein is super bruised and looks like it will never be normal again. i can’t imagine if i decided to receive chemo through my veins vs. the port… NO WAY! not for me. so thankful I made the port decision!!! also, i know all of the tests and “practice radiation” they did is important… they need to know EXACTLY where to radiate. they have physicists study the scans and review every single minute detail with the doctors… it’s really fascinating to be honest…. but I just was unprepared mentally and really regret not doing more research on what my particular radiation simulation was going to entail. live and learn!
my most recent pet scan revealed that there is NO cancerous activity!!!!! as for the mass, it has shrunk significantly and hopefully will be gone after radiation. i will say hearing the doctor say that “it’s ok if the mass is there as long as there’s no new growth or activity” worried me a bit! i know they will keep a close eye on it, but still… i don’t want it there at all! ugh cancer, so stressful!!!!!!
if you made it to the end of this novel…. THANK YOU!!!!!!!!!!! i wish i would have taken some pics of the horrid day… but i did not. you can use your imagination!!! instead i will show some pics of recent happenings… enjoy!