After a week or so of slow and steady progress with the GVHD, I started to feel a plateau in the progress. What the staff was looking for and what I was looking for were a somewhat opposing forces. If fact, I thought that having more "output" signified that we were moving in the right direction, particularly because it had all been diarrhea and we were starting to get some of the formed poop (Nothing like starting the morning off with some detailed descriptions... ha). But alas, the volume is NOT what they want to see. They want to see that things progress to be and less volume. More equals a higher chance for some infection in the gut which could be interfering with the overall progress.
I had been headed down a nice path of adding one food selection every day to my diet which had us all encouraged. I had added chicken (more than just the broth), fruit, potato's, and was working on ordering a grilled cheese when the staff decided that enough was enough and we were going to scale back on all food and resume the NPO died (Nothing by Mouth). That decision hit me and Lynn pretty hard as we sat here that morning. I guess we aren't completely surprised by anything that that comes down the path anymore, after all it has been over 2 months here and another 3 prior to Karmanos. But boy, when you are cruising along, even the smallest change can affect the treatment more dramatically than you might think. Its as if 1 day = 3 days (and generally not on acceleration... its a regression) So, since the 7th (last posting) or so, we've seen my energy level go up to where we would get a little excited about getting some time line for heading home. But it was a little something...
I think we are learning to bundle the time together in weekly fractions and then assess how they should be judged, trying to do it day by day just doesn't cut the mustard (yet another food that would go well with a corned beef on rye). So for the week, each day has been it own little adventure, and if you hear small bits and pieces, its not really a true recap.
Health wise, we know the goal is to get the diarrhea down in volume, which will then be trigger for more people food (not the feed bag I am using now) and once that process starts, we can "look" at dates, but its a circular reference at times as that one setback scares the entire "look ahead"....
Ahhhhhhh.... the new Biopsy of the Upper and Lower abdomen . Looks like this one will take the place of the old Bone Marrow Biopsy. (I hope not). I only made the correlation as I have now have had 3 colon biopsies since January 7. I had planned on posting this update earlier in the week, but felt like it belonged in this update if I could get some answers. The positives are that there is no sign of the GVHD in the colon and or liver. There were some ulcers spotted on the duodenum and those are being biopsied, but the Doctors are continuing to believe that it could be unrelated to the GVHD and just a very tender spot that will require kid gloves in recovery (postponing any tacos', I'm sure).
The results were confirmed and there is no GVHD in the ulcers and those will be slow to heal on their own, and again, it just takes time. That brings it all full circle back to the gut and its nasty disposition at times, which apparently I have brought on some of myself by eating too much hard candy (despite being told not to by my doctor and caretaker.) they are worried about in the gut except for what is being treated at this time. The dietary restrictions, whether it be liquids only, or the BRATE (adding a few things to the liquid) are there for a reason, and my pig head will need to do a better job of letting them heal.
The big news was that I was able to get outside for about 20 minutes on THURS and wow what a feeling. If you haven't been outside for 8-10 weeks, it's a pretty powerful feeling, just to look around and appreciate the surroundings. Yes, I know its the "D", but it's home and gives you another reason for wanting to sit on my own porch instead of the hospital concrete slab.
Now its Saturday, and the 2nd straight weekend without football. Who knew we could manage, the blasphemy! Good for the Packers, I guess. Now the Kool-aid gets mixed and combined with the Lions hot streak at the end of the season... scalpers paradise!
Can we dare say Winter is almost over (and I can say I missed it?)
Last, I will try to keep updating, seems like longer and longer between posts I know. Again, some of the delay means things are status quot, and other parts of the delay may mean we haven't had such a hot couple days and are laying low until things get better, and they do, it just takes time. And m
Thanks for all the thoughts and prayers, they keep us on our toes,
9 comments:
I been reading your post. All you talk about it eating or Not eating and pooping or not pooping. Geez. Got any good jokes to tell us. Where's that Shoop humor? Don't forget who you are and why we all love you.
In a city park stood two statues, one female and the other male. These two statues faced each other for many years.
Early one morning an angel appeared before the statues and said, "Since the two of you have been exemplary statues and have brought enjoyment to many people, I am giving you your greatest wish. I hereby give you the gift of life. You have 30 minutes to do whatever you desire." And with that command, the statues came to life.
The two statues smiled at each other, ran toward some nearby woods and dove behind a couple of bushes. The angel smiled to himself as he listened to the two statues giggling, bushes rustling and twigs snapping.
After 15 minutes, the two statues emerged from the bushes, satisfied and smiling. Puzzled, the angel looked at his watch and asked the statues, "You still have 15 minutes. Would you like to continue?"
The male statue looked at the female and asked, "Do you want to do it again?"
Smiling, the female statue said, "Sure. But this time YOU hold the pigeon down and I'LL poop on it's head!"
A drunk man staggered into a Catholic church and sat down in a confession box, saying nothing.
The bewildered priest coughed to attract his attention, but still the man said nothing.
The priest then knocked on the wall three times in a final attempt to get the man to speak.
Finally, the drunk replied, "No use knocking, mate, there's no paper in this one either.
Shoop have you been sneaking off to church? Luv ya
Leaving for vacation tomorrow. Hope when I get home you'll also be home. Finally got the last hundy. BE GOOD!!!!! xxxooo Vita
At what point can you add White Castle to the diet?
Can I enlist Melissa as a humor consultant for my blog?
Funny thing about GI output in medicine. A surgeon is happy with a lot after an abdominal operation and worrying about an obstruction for 5 or 6 days.
Aside from your team's unhappiness with your output it seems other signs are very positive. I hope the next post moves you closer to a bowl of Skyline.
B&SA
hi shoop,
been keeping up with your blog and one stand out today. the candy. i hope you will listen to the drs and stop the sugar (hate to lecture) but if you research it at all infection and bacteria literally feed off sugar. and then other infections in the gut pop up (candida, yeast, food sensitivities) bc they are opportunistic. it's not good for your immune health either. this means all sugar: carbs (convert to sugar), gatorade (tons of sugar), i would nix fruit too. i know you are back on the feed bag, but a sugar free diet may get you back on solids faster than you think. aside from that, and speaking from experience, sometimes all you can do is wait. time does heal ... takes forever (when you are on this side of the coin), but again, it's often all you can do, which i think you already know. i know the kids miss you and i'm sending their love. jimmy wore your 'cancer sucks' hat proudly last weekend. you've got a big team behind you. hold tight to that. hang in .... we're all thinking about you. toni
Speaking of candy
Peanuts
An old man and a young man worked in office next to each other. The young man had noticed that the older man always seemed to have a jar of peanuts on his desk. The young man loved peanuts. One day while the older man was away from his desk the young man couldn't resist and went to the old man's jar and ate over half the peanuts. When the old man returned the young man felt guilty and confessed to taking the peanuts. The old man responded "That's ok since I lost my teeth all I can do is lick the chocolate off the M&Ms."
We're almost inside a month from opening day. I would think a post regarding the Reds season outlook has to be coming soon.
And to tie the food discussion in with baseball--give us your analysis of the Cameron Diaz / ARod popcorn incident. Can we assume when you're ready to eat popcorn Lynn won't be feeding it to you?
Keep fightin' Shoop!!!
Melissa is such a comic. Hearing you got to go outside was awesome & makes us all better appreciate that we can step outside anytime & enjoy it - so we all better shut it when we want to see winter go away. Appreciate the small things.
You're always in my daily prayers.
Kim J.
Post a Comment