"Don't give up. Normally it is the last key on the ring that opens the door."
-Unknown
Normally, when you hear the phrase "The Big C" people think of THE big one -- cancer. I'll never forget the day I heard it about me. For a lot of people, it's the worst thing they can think of hearing and though it definitely was for me at the time and still is in some respects, I have learned that there are some things that are worse than cancer. Life without people you love. Incredible, unending pain. Throwing up over and over for days. Dark, deep depression. These are just a few things.
Today, my second nurse of the day came to my door and put on a yellow sterile gown and gloves and taped a sign to my door. Now, because I've had cancer for six years, there are few things I fear that she could be putting up there and it is by no means the worst thing I've been told, but it is a straight up pain in the ass, literally.
Clostridium difficile. Otherwise known as C. Diff. Yet another "Big C."
When you're already sick and you know you're going to be facing a whole host of gastrointestinal upset, the last thing you want to hear is that you want to hear is that you have C. Diff. Typically, it presents as non-stop watery diarrhea along with very severe abdominal cramping, among other symptoms. But you CAN be a carrier of C. Diff and have no idea. I am the latter. The good news is that aside from a little stomach cramping that I'd assumed was due to some of my meds, I feel like I'm supposed to feel at this point in time. It is however going to be very annoying.
The biggest question is: How exactly did I catch C. Diff? Also: What does it mean for me and my caregivers now?
* It’s something you can catch if you are immuno-compromised which I have been — I was neutropenic for a couple of weeks there shortly after having a UTI and some heavy antibiotics, which wiped out the good bacteria in your gut that would normally fight off C. Diff.
* I can no longer use public spaces like the lounge. My caregivers (my mom and brother) can, but they have to put on a gown, then immediately wash their hands, then they can go out.
* I can walk the halls, but I have to do the same thing: put on a gown, a mask, wash my hands, then go out.
* They can leave the floor and go anywhere else in the hospital not in a gown. If it’s your intention to go beyond the double-doors, then you don’t have to gown-down.
they have to wipe down the seat with a bleach wipe when they’re done.
* Hand sanitizer is only fine in the room to protect me. If you are leaving the door to my room to go into a public space, you have to wash your hands because hand-sanitizer doesn’t kill C. Diff. This is the big deal -- hand-sanitizer is good, but not good enough for C. Diff. Don't mess with it.
* I’m taking Vancomycin for it. I am mostly symptom free, besides some cramping that I thought was was totally normal for my other conditions/medications.
* I can't use the public laundry here. My caregivers have to take it home, wash it, and bring it back.
In general, it doesn't change a whole lot for me, but it does change a lot for my caregivers and I feel horrible about that. Prayers and good thoughts for them would mean a lot to me. They are already going way above and beyond and this isn't fair to them and I feel rotten about it.
In other news today, we had our first switch -- my mom headed home with my dad and my brother is here with me. He's not physically with me at the moment. He's on a walk around Ann Arbor/U of M right now, which is fine. He knows when to be with me and when to take some time for himself and give me some time for me, which is great.
Also, I was on a walk today with my family around the floor and one of the medical professionals -- I'm unsure of her role, because she was wearing a white coat, but that could mean doctor, nurse practitioner, or physician's assistant, so I have no idea -- was wearing this beautiful upside down crescent moon charm on a necklace and I told her how pretty it was. A few minutes later, I passed her again later in my lap and she caught up to me and GAVE ME her necklace for good luck. It was so unexpected and sweet and she had to rush away before I could get her name or properly thank her. I'm wearing it now.
Another interesting thing I'm participating in is a clinical trial called TempTraq. Basically, it's a silicone patch that you wear under your arm. You get a new one each day and it transmits your body temperature to the researchers and also to an app on your phone that tells you your temperature in real time. And since I'm participating in it now, I get to keep participating in it for the rest of my first 100 days at home, which means it'll be so much easier to keep track of fevers. I'm really excited about it!
I put my first patch on around 2:30 p.m. and it didn't take long to get used to. It already feels totally natural. And because it's silicone, I'm not reacting to the adhesive like I do with Tegaderm and other dressings and tapes.
So far on my checklist for the day, I've:
-brushed my teeth once
-I've done all my salt & soda rinses, but will probably do one more before bed to be safe
-taken one walk in the hall (I need to get a couple ore in)
-met all my fluid goals by like 300% (I'm a big water drinker!)
So that's how things are going on this end. Things are still okay despite this ever-evolving medical situation.
xo,
Heather
* I can't use the public laundry here. My caregivers have to take it home, wash it, and bring it back.
In general, it doesn't change a whole lot for me, but it does change a lot for my caregivers and I feel horrible about that. Prayers and good thoughts for them would mean a lot to me. They are already going way above and beyond and this isn't fair to them and I feel rotten about it.
In other news today, we had our first switch -- my mom headed home with my dad and my brother is here with me. He's not physically with me at the moment. He's on a walk around Ann Arbor/U of M right now, which is fine. He knows when to be with me and when to take some time for himself and give me some time for me, which is great.
Also, I was on a walk today with my family around the floor and one of the medical professionals -- I'm unsure of her role, because she was wearing a white coat, but that could mean doctor, nurse practitioner, or physician's assistant, so I have no idea -- was wearing this beautiful upside down crescent moon charm on a necklace and I told her how pretty it was. A few minutes later, I passed her again later in my lap and she caught up to me and GAVE ME her necklace for good luck. It was so unexpected and sweet and she had to rush away before I could get her name or properly thank her. I'm wearing it now.
Another interesting thing I'm participating in is a clinical trial called TempTraq. Basically, it's a silicone patch that you wear under your arm. You get a new one each day and it transmits your body temperature to the researchers and also to an app on your phone that tells you your temperature in real time. And since I'm participating in it now, I get to keep participating in it for the rest of my first 100 days at home, which means it'll be so much easier to keep track of fevers. I'm really excited about it!
I put my first patch on around 2:30 p.m. and it didn't take long to get used to. It already feels totally natural. And because it's silicone, I'm not reacting to the adhesive like I do with Tegaderm and other dressings and tapes.
So far on my checklist for the day, I've:
-brushed my teeth once
-I've done all my salt & soda rinses, but will probably do one more before bed to be safe
-taken one walk in the hall (I need to get a couple ore in)
-met all my fluid goals by like 300% (I'm a big water drinker!)
So that's how things are going on this end. Things are still okay despite this ever-evolving medical situation.
xo,
Heather
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