I guess that title can be considered a few days old now as I returned to Karmanos on Friday morning and ended up being re-admitted that afternoon for a variety of reasons, well, maybe no a variety, but, I'll try and explain.
Obviously, my last posting had me "moving on up" and out of the hospital last on Tuesday the 4th. Unfortunately that was the wrong decision and I'm sure I helped bait hook as I was anxious to be anywhere but the hospital. Lots of reasons to want to go home though: see the family on a regular basis, taste food other than the hospital, better TV, more comfortable bed, celebrate a small X-mas with our kids at home, etc...
I think Lynn and my Mom knew something was amiss when we arrived at the house and I pretty much made a beeline to the bed and wanted to sleep for a few hours before the Ohio State game. But, eventually I made my way downstairs hoping to feel better, getting a bowl of cereal and something to drink (I know, huge meal). Dad and I settled into the game through the 1st half and then I think both he and I knew something was amiss when I had to go to bed and forgo the rest of the game due to lack of interest and being unable to get comfortable. I think we all held out that the trip home would gradually get better and better, and after a few days, we could settle into the recovery.
Prior to leaving, and the Doctors did express some concern that I had tested positive for C-Diff (defined) and that it might affect me for a bit. It was being treated, and is generally not a huge concern. But, while I had tested positive, the previous 4-5 days in the hospital hadn't yielded many of the symptoms, so they did let me leave. Now at home, the symptoms showed themselves and really made life more miserable than it should have been for the next 3 days.
The bottom line is that the 3 day stint at home was not comfortable in any way. I couldn't enjoy my family. I couldn't sleep more than 1 hour at a time without Ambien, and that only got me 3 hours max when I took it at night. I tossed and turned and kept Lynn up all night which made her days miserable, unable to get comfortable in bed, a chair, the couch, anywhere... and the family finally had to celebrate X-mas with me in bed not well enough to attend. Looking back, I couldn't eat, sleep, drink a lot of fluids (everything tastes like chalk right now), get comfortable, and had the above noted C-Diff working on me... a hospital stay was in every ones best interests. I think we all thought so by Thursday night, and I even mentioned to Lynn that it would be the best move on Friday, when we had a clinic follow up appointment at the hospital at 9:00am.
By the time we reached the clinic, cramps had set into my belly pretty regularly and they started treating with the pain medications for relief. The Doctors at the clinic are the same doctors who treat the BMT patients on the hospital floor, so there is continuity in the personnel and process. The "clinic" is the area that the patients who are sent home have to attend multiple times a week (tailoring off as time goes by) to have blood levels checked, and assess the progress of the patient. I think it was agreed right away that I would be re-admitted that day and we would begin tests for any signs of the GVHD that may have been causing discomfort. Even prior to coming back to the clinic, it had been explained that the gut is the window into follow up treatment, it is the area where problems will show themselves most noticeably.
I think everyone was relieved to have me back in the hospital, all for the right reasons, including me. The 3 days at home weren't worth it and I think it put everyone on a little edge. So now it was time to treat the symptoms and that started with every one's favorite, a colonoscopy and biopsy of that area for testing. We would continue to treat for the C-Diff and now I would go back on IV medications (which were all pills at home) to accelerate feeling better. The tough part is that they wanted to "clear" out my system, so I would be on a diet called NPO, which means no food or drink outside of water, but only with meds... (yes, I've lost weight). The best part is that since I came back feeling so weak and worn out, I get to wear a wristband that says "FALL RISK." I understand why, but talk about getting labeled...
Here we are on Monday morning, the weekend went by relatively uneventful. I have been able to get some better sleep, but still very weak from no eating, etc... doing my daily walk routine is harder and harder. Results from the colonoscopy came back negative for GVHD and we should have the biopsy results today. Part of my taste issues were a result of developing Thrush throughout my mouth and they have been clearing that up as well. The C-Diff is "negative" at this point, but could be finishing its cycle on my body, and while I feel better, its barely good yet for any length of time, and I think we'll be here for ??? (this time, I'm not pushing it, when they say go, I'll go).
I think everyone agrees that I am progressing, and the Doctors aren't letting me outta here feeling the same way as before. Before even entertaining leaving, I will have to be switched back to all pills for medication and that takes a few days on its own to accomplish (and there are a LOT).
So for now... you are up to date. Sorry if I was blank for the last week, but typing was not an option in the middle of it all and even this AM, I'm pretty tired now.
Keep fighting the good fight.
SS
14 comments:
Praying hard for your progress!
Hey Shoopers,
I am thinking of you... This is the time of year we should be getting our jeans ready for devner market, getting ready to go to the wrangler party and have a great time... No such luck... Hang in there. Be strong and remember that we are all thinking of you!
Hey man. Happy and sorry at the same time. You got a peek of the next steps. Lots of excitement. Now you're back for some tweaking. We're all sending you positive mojo and hoping Shoop version 2.011 will be launching soon.
You've moved from linebacker to a scat back. I'd say that's getting on the offense. Keep attacking and the goal line is yours!
Shoop,
Breaks my heart to read this, what a battle you have to go through. our thoughts and prayers are with you guys. I know you will have this licked in the near future.
Hope to see you soon.
B-BO
Dang it all to heck. Well 2 steps forward and 1 step back. You are such a fighter and one day we will look back on this blog and laugh. Well maybe not laugh but say boy that sucked. You are incredible and keep on fighting. You may be benched for now but pretty soon you will be top quarterback or goalie or pitcher or whatever you want to be. You will be kicking butt at bowling and helping me at Mystery because I have missed half of the games. I love your drive, your sense of humor and you. Hugs to you and Lynn.
Shoop,
I got to go to Keeneland all ages sale yesterday. Coldest day in KY so far and we are at the sales.. Pretty spiffy event... It was a pretty cool event. I was thinking of you Buddy.
Keep on keeping on... Thinking of you!
Betsy
Making progress even still. What an amazing fighter you are! Our thoughts and prayers always....
Stay strong big fella. we are all thinking of you. Get rest but keep up the walking. I know it seems far away but we will be on a golf course walking 18 before you know it!!
Shoop - You should be the one writing books. You have an incredible "voice" when you write. You need to write the book of your story. Of course the ending will be when your horse (you) wins the race (against leukemia) - talk about cashing a big ticket :D
My man,when all is finished and you are looking at a 76 on the card you will look back and say " not only can I beat him on the golf course but I know more about hospitals and AML than Blackie does on his best day."
Hospitals are good places when you need one but I'm hoping your next furlough will be a lot longer. We are looking for the next good news.
B&SA
You have a lot of people pulling for you shoop. We are here for whatever you need. Stay strong and keep positive. Love to you and Lynn.
I want to thank you all for being there for us through the best of times and now the worst of times. You are all right about one thing, Shoop is a fighter. Even Cancer can't take down Oscar! I love you Shoop. We will beat this. It's just a matter of time.
Love,
Lynn
Stay hopeful Shoop and Lynn - it sounds like you definitely have been. Many prayers are with you! What an adventure you have to tell for many years to come!
Kim & Steve
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