This will be short but I finally can sit up and write a quick blog post, so I will let you all know what is going on.
Thanksgiving evening I took a neupogen shot, which gave me a bad reaction as it often does. I spent that night in severe agony, feeling like I was delivering a baby out of my spinal canal. The pain eased up by the next day but I never recovered, I stayed in bed nearly unconscious and sick for two days. Saturday night, diarrhea started and I checked my temperature: 101.7. I'm supposed to call my oncologist anytime my fever goes above 100.5 so I called, and they told me I probably had neutropenic fever and to get to the ER and they would call to have me admitted.
I can't possibly describe what I went through from that point on. Hellish would be an understatment and the worst experience of my life would not. I didn't have neutropenic fever, I had a SuperBug infection called C-Diff. (Clostridium difficile) By the time I got there, I was in a bad way. I had fulminent c-diff colitis and was septic. I spent two nightmarish days in ICU with a dysentery-like diarrhea, pain,, and sickness like I've never felt before. My heart rate was 160 and my blood pressure sky high. They gave me antibiotics.
The antibiotic started to work, so they moved me to a ward, on IV flagyl and vancomycin. They told me they thought they would have to take my entire colon out, although I was in such bad shape they didn't want to operate on me, and in looking it up, survival is not good for that operation.
On about Day Four the surgical team decided I'd recovered enough that my colon was safe, and I was so relieved. But, right at that point is where my recovery stopped. And, my belly started growing. On the seventh day they let me out of the hopsital with a prescription for vancomycin and I went home.
I've been home since Friday, and today is Wednesday. At first, I was overloaded with IV fluids. My legs were swollen from thigh to ankle and they looked like elephant trucks. My stomach was also very bloated, and I also thought that was from IV fluids. Made it very hard to breath. But, now that the IV fluids are gone, my stomach is still horribly distended. I can do only the most basic self-care; my husband had to take the week off to help me. I still have diarrhea about 8 times a day and I don't seem to be improving.
My last meal was Thanksgiving - on that date I weighed about 100 pounds. When I got out of the hospital that first day, after non-stop diarrhea and no food, I weighed 118. Now I weigh 110.
I saw my Primary Care Physician yesterday and he said that if I wasn't better in 24 hours, he wanted to re-admit me to the hospital. My vitals are fine but the belly distension is worrisome. I'm not better but I made an appointment with my oncologist for tomorrow, and I'll see what he says. I know he'll fight the bowel removal and I want him in charge of my care. So, between these two doctors, I'll likely be back in the hospital this weekend but hopefully they will have a trick or two up their sleeve to get me into a real recovery.
I have not been able to lift anything heavier than an iPad or iPhone and can't update the blog from those devices. I tried to give twitter updates and will continue to do that when I can't post.
I know there have been many worried thoughts about me, many prayers sent up, and well-wishes sent my way.
Thank you for that, and keep them up for I'm not out of the woods yet. All I want now is a nice, simple Christmas with my family without the fear of losing my colon hanging over my head!
1 week ago