today was my first of many of a type of chemotherapy treatments for uc.
yes....i have been putting this off a long while.
for the sake of...whatever....here's a summary:
i almost died last year because i had undiagnosed and therefore, untreated uc for months. i have been in a flare of varying degrees for over a year now. my disease has not yet gone into remission.
well, recently it got "almost died" bad again....
to say i have been cautious about my treatment is an understatement. the medication options a person has with UC are not pleasant. there's a tier of relatively harmless drugs they put you on first. if those don't work, they move to the next tier...typically steroids...which suck and which i will not take longer than a month or two.
if THOSE don't work....they stick you on these chemo, immune-system killing drugs. these drugs come with enough risks and side-effects that they're only worth taking if nothing else is working and you're losing your life to UC- like i am.
well, for the last year i have stayed mostly on the first tier of drugs, which has kept my illness down enough that i have lived a....well, nowhere NEAR functional life. i have only managed to work part-time, and even then i've had to take a lot of sick days. i can't go out much, can't travel. i'm constantly anemic. the list goes on and on.
this last month, my UC flared again so severely that i spent a whole weekend unconscious and was throwing up absolutely everything, including any water i tried to drink. i had to go to the hospital for IV therapy to keep me hydrated. my GI was concerned yet still gave me the choice of what to do...he mentioned the chemo med....but didn't push me. i decided to take a small course of the steroids with my normal, mild UC med and sort of see what happened.
well, i got a little better for about two days...and then suddenly much worse. the pain in my stomach was so excruciating i could hardly breathe. i could hardly get out of bed and when i did, it was to go to the bathroom. i was achey and feverish, and weak. going to work was impossible. my body stopped responding to the steroids. this was a VERY bad sign. so back to my GI i went.
"okay look....you're going to lose your colon or die from this at this rate. you need to do these treatments." he said.
so.....i did. what choice did i have? it's not like i've had ANY quality of life the last year really. i can't camp, hike, go out with friends, date, ANYTHING. i can't work, and working with kids is my passion. i can't write, because my brain becomes so foggy when i'm sick. the potential effects and risks of the treatments were scary but not scarier than what i was already living in. plus, i'd had so many good blessings. it was time to go by faith.
so today i went to my first chemo treatment in the huntsman cancer center. it was a humbling and moving experience. i was put in an area surrounded by other patients getting THEIR chemo treatments. there are different kinds, and some of them had iv's going into their chests. mine just went into my arm like i am used to.
when i walked in, i can hardly describe the feeling. i was the youngest person there. one woman, who looked to be in her forties, was wearing this awesome skirt, boots and tights outfit and was surrounded by friends. she had a scarf on her head, and instantly i sympathized because it was SO hard last year when i lost about 70% of my hair. there was an old man who looked so tired, i felt tired just looking at him. i walked into that room to my seat and felt the most amazing feeling of love and acceptance. nobody knew exactly why i was there but me, but they knew that i was clearly battling something serious and they understood. everyone gave encouraging smiles. it was like being at church if NO ONE judged....it was just amazing. i listened to some of the conversations around me...the things these people were going through just to live a little longer. suddenly, i was intensely grateful. grateful that even if this treatment is hard on me...the chance of it working and restoring me to a normal life is very high. it's not like that for the people around me. how much time did they have left, i wondered...and how much more would they have to fight?
the treatment went without incident, and my heart was full when i left. i thought about what it will be like when i come back in two weeks...the people in that room with me were true warriors. i saw it in every smile they gave me, in the faces of the friends of their accompanying loved ones. it made me realize how silly i've been to put this treatment off. suffering through the sickness the last year has been making me a victim. suffering through whatever effects the treatment brings makes me someone who is fighting. these people are fighting for maybe just a few more months. i am fighting for normalcy. i have so much more to fight for, and they are fighting harder than i am!!! it's time to step it up.
all in all, i am intensely grateful for the Lord and how well He knows me. He knows i needed to experience this today. He has promised me i'll get well. the rest is up to me, and i'm going to make it happen.
i've almost died enough in the last year...clearly i've got things to live for.