A quick “up to speed” for anyone just checking this link out. My history is with severe Crohns disease, non responsive to all standard Crohns drugs, and to all trial drugs I could get my clammy hands on (Remicade, Humira, Entyvio, Stelara) and then the out lying immune depressant drugs. I am now excited to be trying a new treatment called extracorporeal photopheresis, extracorporeal photochemotherapy, or extracorporeal photoimmunotherapy. Those are long words but I hope that will catch anyone looking it up who may also be starting it or wondering about the treatment. This will be much easier to read than the other internet options.
In short. I get hooked up to a machine and I.V. line, it cycles 1.5L of my blood separating the white blood cells by centrifuge. The separated white blood cells then get mixed with a chemical (8-methoxypsoralen) which is UV (ultraviolet) sensitive. The mixture is run under a UV light that makes the whiteblood cells go into this state called apoptosis. These cells are then pumped back into my body, which in turn tricks my body into attacking these cells instead of my immune disease. This gives the parts of my body that my immune system is usually trying to constantly destroy a much needed break and chance to heal.
What I have noticed this first month is that, as messed up as I think I am, other auto immune diseases are just as hard, if not harder than my journey. My treatment room has two machines so I get to sit across from another person receiving the treatment for their issues like: T-cell Lymphoma, Type 1 Diabetes, Multiple sclerosis, and a bunch of other non responsive immune diseases. So everyone there is having a hard time. Spending that much time next to people also going through tough shit is really helpful, most have great insights and tricks or tips, and some don’t want to be bothered. I try to be friendly and if I’m engaged by the other patient I will start a conversation but if not I just bug the nurses because they HAVE to deal with my constant questions.
It is important to have empathy and compassion for everyone in that room. “Don’t be a rude dick or if someone else is a rude dick use it as a lesson on how not to be a rude dick” I really don’t care how sick I am or how big my problems feel, if the 70 year old lady with lymphoma who cant move herself can be nice, so can I. I try to understand the nurses are at their job too, they handle rude dicks well, but are people going through their own lives and issues as well. I should be a good part of their day not a bad part. The patient next to me could be having the worst day of their life that day and they are in no way obligated to recognize me as a fellow human. But most do because they have compassion and empathy in that moment, if not stressed. They owe me nothing and its not a competition of who has it worse, if you’re in this club we all have had our challenges and have been broken or given up at one point.
Before my appointment I keep as hydrated as possible without drinking too much that a washroom is needed…because I’m hooked up to the machine, which isn’t easy to stop and unhook, so bedpan it is. Which it perfectly acceptable to use but also means the nurses have to deal with it later. The hydration keeps my vessels nice and plump, easier to work with, and faster to draw from, all which save time. Fatty foods the day before, up to treatment time, should be low in fat, fat in the blood stream is hard to distinguish from white blood cells so the process takes longer. The machine gives me a blood thinner mixed in, so calcium and magnesium pills are taken to offset some of the loss of those minerals during treatment. Some people try to arrive tired so they can sleep through it all. That doesn’t work for myself. Also this process varies in time greatly. So appointments might be early, on time, or very late. Nothing anyone can do but guess. Waiting might be a thing but no one is to blame, except the machine, I can totally blame the machine…it doesn’t even have feelings, stupid machine with your beeps and chemicals “Ou look at me I save people” shut up machine you self righteous prick.
As for the treatment itself, I try to wear comfy clothes with easy access to the arms for the nurses. T-shirts are preferable, I tried muscle shirts but the nurses really don’t like putting tourniquets on bare skin. My treatment center has a endless amount of blankets if a t-shirt isn’t enough to keep warm (blood does cool off while out of the body) if under blankets, or sleeping I try to keep my I.V. arm in the open so the nurses can see whats going on without worrying crap went wrong under the blanket and waking me up, also I pretty much never move that arm unless I want to be stuck in there forever with constant alarms beeping and going off. Time passes however I spend it, a good conversation can make it fly by, or my phone is a great distraction, if one can use their non I.V. arm, if not, it’s a good time to work on becoming ambidextrous. They said to bring a laptop or book if I wanted, but I really don’t think that would work with the amount of arm movement I need to type or turn pages.
Treatment is just laying there comfy for a few hours. With constant checks of blood pressure and that you are in fact, alive. The machine probably goes off a few times for random reasons and keeps the nurses busy. There is no pain. This isn’t a complicated step.
After treatment things may be a little interesting, but results may vary! First of all my blood is now UV sensitive so any UV light hurts. I thought when they said to avoid sunlight they were crazy, me the guy who lives for summer isn’t going to avoid sun. Until I met the sun, felt like my eyes had arc flash burn, or in other words gives me a huge headache and eyes hurt. apparently skin can sunburn easily too, but after a couple rounds, sunlight is no longer my friend and I didn’t stick around in the sun enough to find out. Avoiding sunlight is important even through windows and stuff, so I’m finding things that don’t involve exposure to UV rays. My solutions so far have been, yoga at the gym, anything with friends at night or indoors, video games, more drawing, and starting to look at more small business courses online to follow so I’m not completely lost when I enter the work force again. I would like to set up a stationary bike to practice balance stuff, but we will see how that goes.
My immune system is working crazy hard after treatment, so I have a fever and exhaustion on top of what my Crohn’s symptoms are. Headache is bad but isn’t a migraine, It drives you to the edge but doesn’t push you over. Just fever, pain management, and sleep for a few days and I’m ready for my new indoor life!
Putting in place and system of routine and mental checks is the only way for me to get through this without falling into a deeper depression. My body and mind want to be comfy and to do things tomorrow, but those a tricks of my mind, tomorrow I will feel the same when I wake up and will put it off another day. I realized I think of myself in the future as “perfect” as in when planning the next day I think of my future self as full of motivation, with a good attitude, energy, and no procrastination. But that has never happened once. I feel the exact same so it’s better for me to put tasks in place the moment I should, instead of delaying them, no matter how I feel. So I think critically and worst case scenario, what do I have to have in place to not get depressed or catch me as I fall. Routine, activity, socialization, critical thinking, goal achieving, and mental check ups are all things my body doesn’t want to do, but it doesn’t matter what my mind wants because it is a trick of my human existence. So I have a routine, started an achievable gym routine. I have talked with friends and family about keeping up socialization, I try to look at myself from a third person point of view to identify and fix weaknesses that may come up or develop. I’m trying to set new goals to achieve, so that I can get a reward system without the sun. I have put in place my psychiatrist, psychologist, family doctor, and specialists to keep me with regular check up during the next year, and will use each of those to help identify what I may need to work on. I won’t be perfect, I may not be jubilant, I will struggle and I will overcome. I believe in the lessons taught, from the struggle of life and I believe that I still have hope. Even if I go extended periods of time without feeling it.
Quick pros and cons:
-This could make me feel better in a year.
-I’m rearranging my reward system to not use summer as a crutch which may make all year a more bearable time.
-I have set up support for when I fail.
-These regular appointments help grow my compassion and routine.
-I get to wear cool sunglasses all the time, also received a purple blanket from the drug company.
-I get to overcome and push my limits of what I know I can accomplish and deal with.
-This makes my diet better and hydration a priority.
-I get to work on other skills, like writing, blogging, drawing, talking, video games, creativity, and learning.
-A more aggressive chemo therapy wont be as much of a shock if other illnesses require it in the future
-Gives me hope for my future.
-I will be a much more convincing ghost on Halloween
-Fever, more exhaustion, and headache at least 3 days a week.
-Cant sun tan with super hot babes all the time on a yacht. This treatment is the ONLY thing holding me back from that.
-Have to interact with humans and not just my cat.
So if you are starting this treatment, thinking about it as an option, looking for a friend, or just looking out of curiosity. I hope this can help at least one person feel better about going into it or just dealing with their own struggle, what ever that may be.
Also I kinda want to write a book…anyone know how you do that? Like do I just start typing and post it as a PDF or do I go to like contact a book person. If you have any tips on how to get more than 4 people to read it when finished, hit me up at Rii Projects on Facebook. Now stay out of the sun, son!