Have The Day That You Have
Title of this post is from the movie The Odd Life of Timothy Green. They thought maybe “Have a good day” was too much pressure. Sometimes it is and you just have the day that you have. And it’s okay.
I know you all are getting tired of reading these posts and honestly, I’m getting tired of writing them. I had to go to the hospital to stay for a week and I got home Thursday. It all started last Thursday at around 4:00 pm. I texted a few friends that I was starting to feel not so great. I was home with the children and we had been having a good week. I started to feel a little crampy in my gut. Not that strange, it happens. My friends seem to jump to conclusions that I’m either dead or dying if I don’t respond to texts within an hour. They start bugging Jeffrey. He doesn’t really know what’s going on. I’ll spare you the details, I was on the potty spewing abhorrent fluids from all directions by 7:00 pm.I’m not supposed to just wait these things out so I called the on-call doc and spoke with the BMT charge nurse. I was told to take 60 mgs of Prednisone (for fear that it was severe GVHD) and if I could keep fluids in we could go to the hospital in the morning. It didn’t work. The Prednisone came right back up with every sip of fluid I attempted. I emerged from the bathroom to find a bag packed and I called the charge nurse back and by 10:00 pm we had the kid’s fearless and ever-ready grandma at the house and we were waving our VIP card at the Emergency Department at the OSU Medical Center. Until the new James facility is finished the cancer patients have to go through the general ER with all the cases of strep and GSWs and bar fight injuries. I remember enough to still see a picture of the guy ahead of me at check-in describing the etiology of his affliction. I don’t remember details because at this point I was severely dehydrated. I was able to nod answers to questions and give my SSN while Jeffrey parked the car.
The staff knew that I was coming and I was wheelchaired through to triage with my head lolling about to the side. I was told later that my heart rate was way too high and I was near unconscious. I don’t know how long we were in the ER but it couldn’t have been long because they wouldn’t touch me. There really is a VIP pass to the ER and so far I’ve never had to wait. I was given a room on the 8th floor and the famous traveling Tom was able to get an IV started in my impossible veins. The next couple days were a blur as I was on 3 different anti-nausea meds and painkillers. I was sent for a simultaneous endoscopy and colonoscopy. I am picturing the scope cameras somehow meeting up in the middle of my GI tract somewhere but I have no memory of any of this. Biopsies were taken and all of my parts were observed. I was diagnosed with an absolute riotous case of C Diff. It’s a bacteria that people with lowered immune systems get from the use of IV antibiotics and institutional medical care. This is my 4th recurrence of C. Diff and the worst one yet. Although the biopsy for GVHD was negative I was given a clinical diagnosis of GVHD of the gut based on the positive response to the steroids used to treat it. And they use high high doses of steroids. And I hate them. I hate this medication so much that I scheme and plot to get my dosage lowered and sometimes the doctors listen. This time though the doctor would not hear anything of it. I was also approved for a crazy expensive medication that not very many people get but it specifically treats C. Diff. Since this is my 4th admittance to the not so cheap hospital for this illness I was not as surprised as some that I got approval for this med.
She told me something that I needed to hear. She told me that I could die without this medication. She said that if the dosages were tapered too quickly and if the GVHD flaired back up it could become resistant to steroid treatment and my insides could slough away and it could kill me. I’m no longer allowed to complain about my steroid dosages. No one wants to hear it. I was started on a type of steroid that works just in the intestines in addition to prednisone. It’s used to treat patients with Crohn’s with chronic inflammation of the gut. This will allow the doctors to taper my pred doses more quickly but I’m still on 100 mg a day. I can’t sleep, my skin peels off, my eyelashes fall out, I get uncomfortably bloated in my feet, ankles, belly and face and I develop a very unhealthy relationship with mayonnaise. But, sticking with the theme that at least I’m not dead, that is all I will say about that.
I was feeling much better by Monday at the hospital but they were not yet letting me out of their sights yet. I had my favorite nurse, Larry, who always makes me laugh and embarrasses me with poo jokes constantly. My buddy Joe has a fabulous new job on West campus OSU and he made the trek over to the James to take me to lunch daily. I loved my lunch dates even though he had to pay because Jeffrey confiscates my wallet and I couldn’t really eat anything other than rice and bread. It gave me a reason to get out of bed and shower and took the pressure off of Jeffrey to make it to the hospital right away in the day to keep me company. Victoria also visited to take me outside for walks. She seems to think fresh air cures all the things. I walked all the way to the very edge of the medical center campus to where I could see the texture of the road and the buildings I could not visit. Of course, I complained endlessly about all the bullshit hospital stuff. She wouldn’t hear it. She said, “You know, you could call me tomorrow and tell me that they are removing both of your legs and I wouldn’t care as long as you are not dead.” It takes a special kind of friend to say that.
By Wednesday there were hints of discharge but I admitted to the doctor and she agreed that one more day would make sure I was well. I am home now and while I look like a battered woman from my bruises and scars and I’m surviving on a diet of eggs and toast I am doing okay. I’m trying not to think about the full week that I lost. A week with my children. A week of appointments and exercise classes and big plans for continuing to rejoin the real world. But I will start again. I can’t make up for lost time but I keep moving forward.
I was freezing cold and asked Larry to bring me some pants. I hope it was a joke because he brought me bariatric pants.
Even the nurses who feed pills to people all day long comment on how many pills I have to take in a day.