latest update... from LYNN

Cancer Sucks is right.  Shoop made it home for a couple of weeks.  We thought we were headed in the right direction and then his pain over took him.  He was readmitted on Mother's Day, so yes, not one of our better days.  The doctors continue to be baffled by his pain, especially because it is worse than his previous stay.  They decided to do a test called a lower bowel follow through.  I think that is the name.  Anyways, Shoop had to drink a lot of "liquid chalk."  Not the real name but it is what it looked like.  Once this coated his small intestine, they proceeded to take a lot of x-rays to see if they could find anything out of the ordinary.  What they found was a narrowing of the lower part of the small intestine.  They still needed more answers so they did a colonoscopy to see if there were any obstructions or what might be causing this narrowing.  After three days, the results came back that he has CMV virus in the lower part of his small intestine.  Bare with me,  I became an Elementary teacher and not a nurse for a reason.  This is more than likely causing his extreme pain.  They have him on high dose antibiotics to see if that does the trick.

I did not come in for a day to take a mental break and as I walked into his room on Friday, I noticed his face was beat red.  It looked just like it did when he had GVHD of the skin.  Yes you can get it again, and they did a skin biopsy yesterday to confirm it.  So he is on steroid creams to help the inflammation and the itching.  His face looks a lot less red today which was good to see.  He will peel again but hopefully not as severe as last time.

Shoop has had some rough days.  His gut started to bleed a bit but they think they have that under control now or at least they think the antibiotic is starting to do the job.There hasn't been any more blood in his stool.  Sorry, that might be too much information.  He will continue to get blood and platelets as needed which has been more often than not lately.  As the stomach heals, the need for these two things should decrease.

Where are we as of Wednesday, May 25?  We are trying to control his pain.  His pain has increased substantially.  They believe it is due to the narrowing of the ileum that may be causing intermittent obstructions.  Shoop is back on his pain pump, pushing it as needed with a fifteen minute lock out.  The doctor's concern is that even once the CMV is gone, the narrowing will still be there.  The last resort is surgery where they would remove that part of the intestine but we still have a couple weeks to heal before we cross that bridge.

Sorry this update has taken so long and isn't half as much fun to read as Shoop's blogs.  I just wanted to get the information out there to all our friends.  Please keep the thoughts and prayers coming and again, thank you all for your love and continued support.


Love,

Lynn

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.