Monday, December 19, 2011
Most people recover from C-Diff in 3 to 10 days. As you all know by now, I am not most people. It has been very disheartening being sick as long as I have been - since Thanksgiving - but last weekend, I saw an uptick in my health and now I believe I am on a (very long) road to recovery.
My life, since I got out of the hospital on December 3rd has been this:
1. Mornings about 9:30: Painfully and oh, oh so slowly, I get out of bed. My colon hurts, and is swollen, and I am carrying a 9 months pregnant-sized belly around. My feet were also swollen and I weighed 118 pounds out of the hospital - 18 pounds more than when I went in, and that was before constant diarrhea and 9 days of no eating, so I'm clearly extremely bloated. Sitting up is like climbing a mountain with broken ribs, and trying to put my feet on the floor is like finding a crevice and having to push around to find solid ground.
For a while, I decided to sleep on the couch as I could not breathe lying down in bed. Then I got out a sloped wedge pillow I had and was able to sleep propped up. My husband wanted me next to him, maybe to keep an eye on me.
2. After the difficulty of getting out of bed, I forced myself to sit at the dining table and have a half cup of decaf coffee and read the paper. This has been my routine for 18 years, and I wanted that normality. This was very painful for several reasons: sitting up straight is extraordinarily difficult on whatever was going on inside with my colon; I'd lost a significant amount of weight and my hard wooden chairs are painful on my butt/back bones, and I have been experiencing neurological problems, so each turn of the head, or eyes, or slight movement, sends electrical shocks down my body that I can actually hear. It sounds like the whooshing wind. I force myself to eat a Fage yogurt and read for as long as I can.
3. Hobble to the bathroom and release toxins.
4. Wash hands and retrieve (slowly and gently) my iPhone and iPad, and head (slowly, hunched, and shuffling) toward the couch. I had it set up with a small table next to it, a 10 foot Apple charger, a glass of water, pain meds, several pillows for propping, and a blankie. There I would spend the remainder of the day - until bedtime. My habit has been to watch documentaries on Netflix (saw some good ones too) and then read for a while with my iPad kindle app, then watch some more documentaries. I'm reading a book a day, and I'm a picky reader. Ten bucks a day is a lot to spend, so I'm trying to find more movies or books that last longer. (Suggestions welcome but I am looking for good literature or interesting non-fiction - I like memoirs of non-famous people. I don't like mysteries or popular formulaic fiction - and definitely not science fiction.)
5. Take a bath. (Showers require too much standing up but I have a removable showerhead for washing hair.)
Up until last weekend, that was all I could do. I didn't want to talk on the phone - or in person - because breathing was difficult. Moving was difficult. Living was difficult. I couldn't answer email (I'm sorry) as it required more energy or thought than I could muster.) I felt that my colon was still in danger of rupture. I was very, very sick in a way I had not been before and in a way I find hard to describe. "Just snap out of it!" Impossible.
My husband stayed home for a week from work, because I couldn't stand long enough to make myself some soup, and it hurt terribly to get more water or move around. I was extremely tired, slightly depressed and feeling like I was never going to come out of this disease. The second week, my husband had to go back to work so I was alone. By then, I could stand long enough to make soup and mostly, I didn't think I would die right then so it was okay for him to be gone all day. But, it was lonely and I thought this bed to couch existence would be my life until cancer got me.
We had no Christmas tree - my family didn't want to get it without me. I understand that, but it was a burden on me to know that without me, they wouldn't celebrate Christmas. We have all decided that after the holidays (when they are on sale) we will get an artificial tree. As much as we love real trees, there may be times in the future when I can't leave the house again and they need to celebrate the holiday. We can still get a real tree and choose the best as a family but if I'm sick, we can pull down the fake one.
And, you'll note my optimism in planning to be around for another Christmas. But, I no longer feel that is a certainty.
Eventually, the diarrhea slowed. I was able to get around a bit better. I could do a load of laundry, walk to the kitchen. The bad pain went from all over my midsection to just the right lower quadrant. It feels a lot like the pain you get when you run too hard and get that stitch, only mine doesn't go away. The rest of my abdomen feels like I did a hundred sit-ups.
All the water weight from the hospital is gone and I weigh 90 pounds. My stomach is very deformed but I'm not 9 months pregnant anymore - now it's like like I have an alien baby - a big swelling here, a concave area there, a tail-sized length over here. The diarrhea has slowed to just a few times a day.
Two days ago, I got dressed for the first time.
This Saturday, I was able to walk long enough to get a Christmas tree. I was nauseated when I got home, but I did it. We decorated it yesterday.
Thank goodness for Amazon Prime. I have almost all my Christmas shopping done. I have to go to one store, which will be an adventure and I'm not sure I can.
I'm still trying to get an appointment with a specialist, although they are saying 3 weeks, which is completely unacceptable. I saw a Dr. Nassir in the hospital and some sort of protocol means I have to see him again and he's not available. I don't understand this because the woman on the phone told me there were 40 infectious disease specialists in their practice, and I don't care which one I see. I saw Nassir in the hospital for maybe a minute and he only directed my care until the hospitalist took over. I no longer feel like my colon is in danger of rupturing anymore but I am still taking vancomycin (my PCP kindly gave me six refills) and I want to know if I can stop taking it, what to do if the c-diff comes back, how long I'll be in this debilitated state, why it has taken me weeks to recover when others only take days, when I can eat a normal diet and when I can start chemo. I told the appointment-setting woman on the phone to please call me Monday and if she couldn't get me an appointment in a reasonable time I'd go elsewhere.
So far, it's almost 1:00 and no call.
I've had a home health nurse calling me, and they said they were going to send somebody out, but they changed their minds. That's fine with me as I don't know what a nurse could do for me, but I just called her to see if she can help me get in to see a doctor quicker.
This has been an awful disease and it's frightening being as sick as I was, and I don't think I'll ever be able to relate my hospital experience online - it was the worst thing I've ever gone through. Having sepsis and never-ending diarrhea is not the way I want to go out, I can tell you that much. I'm glad I'm recovering but I have had to tell my work I won't be back when I was supposed to in January, and now my money will run out. My job is only protected for a few more months and I'm not sure I'll make it back.
And, I've had to miss chemo, which makes me very afraid the surgery I had to remove my liver was for nothing. We all know that metastatic cancer means there are cancer cells in other places, and without chemo to kill it I may end up right where I started, only this time without the hope of surgery.
But, I'm stepping on the path to recovery, however temporarily, and the flowers alongside that path are lovely. I'm able to function now, although at a very reduced ability, but it's better than I was two weeks ago, and I hope two weeks from now I'll have even more recovery behind me. I'm so thin no clothes fit and I look scary but I hope to gain that weight back soon.
This disease left me with the knowledge that I'm very vulnerable. I thought, in a cavalier way, that the liver resection surgery would surely give me years and years and I'd eluded death, at least in the short term. I thought I might see my son go to college, my other son get married, maybe even see a grandchild. I know now that isn't close to a guarantee, nor is it likely. The life expectancy for a person with metastatic breast cancer to the liver is 2 years, and it is no longer impossible to believe that I will be gone next year. It's made me sad and while I have not given up the fight, I know know there are powers beyond your will, mind and desire that are stronger than you are.
C-diff may not kill me in the conventional way, but since I can't do chemo, if I die of cancer in the next year, it will certainly have played a role.
Posted by Ann aka ButDoctorIHatePink at 1:17 PM