Back in the Hospital

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

New Year, New Start

Hopefully, the above sentiment can ring true for this damn Cancer thing.

Good news is that it looks like I will be going home on Monday the 3rd.  We've been quietly hoping this is the case and all seem to be on track for leaving tomorrow.  I know its been a week since the Christmas post and while the it may have lacked a lot of adventure (good thing), I've been very up and down in how I feel.  A couple days pretty good, and others not so hot, but the doctors are all pleased with my progress and the blood counts showing stability.

Over the last week, the length of the hospital stay has started to really wear me down.  Sleep is random at best, most nights grabbing a couple hours between 11pm-3am and then falling asleep around 4am until the barrage of visitors (shift change, doctors, and more doctors) in the am.  If I can catch a nap in the afternoon, its a bonus.  All of this made it tougher to take visitors for very long.  Rest assured, I want to see everyone and will in due time.

Just saw the Dr. and he isn't promising Monday, but more like 50/50 for Monday, definitely Tues.

The ironic part of being in the hospital so long is that when you get near the check out date, it throws a small wrench in program.  You get used to the hospital being some type of weird security, which it isn't.  Going home is more welcome than imagined, but now it becomes the waiting and waiting.  The body doesn't recover quickly and the next 90 days are critical for not developing any of the infections that are the major risk.  But, as the doctors have reiterated over the past few days, I am in as good a position as I can be right now.

Getting back to doing some work (in between the 3x a week Dr. visits) will be welcome.  And on top of that, we'll figure out, for the first time in months, how to start living around the house with some sense of normalcy.  There has always been the "next" treatment scheduled and we've all been on that anticipation schedule.  Now its time to anticipate getting better, as if the new year did turn a page for this ordeal.

I may only feel about 60% at best, but it will sure feel a lot better in my own bed, on my own couch, etc... and some of my own food on a non Del Boca Vista schedule.

Will get more out later, even more football to fall asleep to today...