Time Gets Away When...........

Wow, I guess I pushed this update thing a little far out, but what better time than my 4 month anniversary from checking into the hospital.  Of course, that would include the 2 trips home that became learning experiences on how to really feel when you think you are ready.

Since Lynn assisted with the last update (thanks babe!), I wanted to make sure I took that burden off of her shoulders as well.  Clearly, we’ve had plenty of ups and downs with how I’ve been feeling and being able to handle some of the aspects of the post BMT.  The major issue has continued to be my intestinal area and how it is reacting to the drugs and food I’ve been allowed to include in my diet.  We have gone back and forth from just a water/liquid diet to one that includes some turkey slices.  

With little progress, the Dr.’s have decided we will back everything down and try and isolate the source of the problem that continues to haunt my midsection.  I have had a lot of good days recently and been able to catch up on a little bit.  But, it’s been really hard not being able to be at home with the family.  The safety of the hospital setting certainly set in, but we do want to make sure that the next time I go home, its permanent!

Over the last 6 weeks they have confirmed that I have changed blood type to AB Negative and I’ve had all kinds of procedures including chest x-rays for pneumonia, Doppler scans of legs/arms (for clots), CT scans, and EKG scans.  We do know I have ulcers below the stomach that are causing a lot of the pain and trying to get those healed is at the top of the list.  The GVHD has not been the major problem in recent weeks, and getting to the bottom of what is even has the staff taking it slow.

I hate that my blog silence had put some worries out there on me, but once I returned to the hospital for the 3^rd time, my body and mind had been beaten down pretty good.  This is a crazy disease, and on 2-3 separate occasions my weight has fluctuated 20+ lbs and my strength has literally left me feeling helpless in bed.  On top of treating the primary side effects, items like weight and strength have to be dealt with as well.  We have had the physical therapy team in and they have given my personal trainer (Lynn) plenty of drill sergeant material.  Actually, she has kept me to task and we are seeing a lot of progress with my strength.

The goal hasn’t changed on our end or even the Dr’s; it is to get me out of here but only when they and we feel I’m at a very low risk of returning to the hospital.  And so everyone knows, I am getting all of the cards and emails and it is still overwhelming.  THANK YOU!

And, thanks to April bringing baseball back.

latest update... from LYNN

Hi All,
This is Lynn writing for Shoop today.  Over the past couple of weeks we have had quite the adventure.  Shoop's health was steadily increasing to where he could go home.  Shoop came home for the week-end starting Friday, March 4th feeling good and had a nice week-end but noticed his strength steadily declining. 

We had our standard clinic visit on Monday in which we sensed possibly something else going on.  One of the symptoms is that his strength seemingly melted away.  Now he needs physical therapy to do more basic tasks (even typing for 20 mins takes up to much energy)

The doctors did not want to release him and we felt the same, as sad as it is.  Now we are managing the same type of symptoms that we did way back in January.  Again, identifying what is going on has been the biggest obstacle.  Once this is done, the doctors are confident that we can have an effective treatment plan.  However first we have to determine whether it is GVHD again or other viruses such as CMV.  He is currently back on the NPO diet and have been for a week.  His weight is fluctuating significantly and that is the first thing the doctors need to get under control. 

Discharge doesn't look imminent at this time although he knows this is the right place to be.  If nothing else, we will try to keep short updates once a week.  It's very frustrating not being home but we are so appreciate of all of the wonderful meals and never ending support.