Wednesday, August 22, 2012

We know what its not...

As I mentioned in the last post, Paul has been suffering from lower back pain, into his hip and groin.  So, we have been working for the last three months to figure out what is causing it.

First, Paul had MRI’s of his back and both hips.  The back only showed some scar tissue forming around the area he had his spinal fusion.  The hips look pretty good except for some arthritis….so the good news no  avascular necrosis was seen.  The bad news still now answers.  So the next step was to go to a urologist.

After meeting with a urologist a couple of weeks ago, they thought Paul might have a kidney stone lodged in there somewhere.  They wanted to do an intravenous pyelogram (IVP) which is a special x-rayexamination of the kidneys, bladder, and ureters (the tubes that carry urine from the kidneys to the bladder) to see if they could find anything.  The problem is you have to do a bowel prep before they do the IVP.  Since Paul has no stomach and already has problems with his bowels they weren’t sure it was a good thing for him to do.  They said they had never had a patient without a stomach before, so they called up Paul’s gastroenterologist to get an opinion.  They decided it was best not to do the bowel prep if it wasn’t really necessary because if they did find something, they would have to do a cystoscopy anyway.  A cystoscopy is a diagnostic procedure that uses a cystoscope, which is an endoscope especially designed for urological use to examine the bladder, lower urinary tract, and prostate gland. It can also be used to collect urine samples, perform biopsies, and remove small stones.

Paul had his cystoscopy yesterday.  The doctor said he did not find anything unusual…no kidney stones or strictures.  He was stumped.  As was I.  My first thought was Paul is going to be glad there is no apparent  problems with his kidney and other organs, but he is going to be discouraged because we still don’t know what is wrong.  I was right.  Paul was happy, but actually depressed at the same time.  

Paul felt pretty miserable after the procedure.  Let’s just say he was glad he was under anesthesia for the procedure because it is like getting catheterized only worse…  It was VERY uncomfortable to have to pee afterwards and still is today.  He puked several times yesterday and just felt really miserable.  His back was absolutely killing him yesterday…  By late last night his back had finally calmed down.

Amazingly, today Paul’s back feels the best it has felt in three months.  We don’t know if they dislodged something when they were in there and just didn’t see it or what.  We are just hoping this a permanent thing!  We don’t want to jinx it!

My heart has been full of sadness the last couple of days.  I have been following a blog about a guy named Trent who had Pleomorphic Spindle Cell Sarcoma.  His wife Holly, had been keeping this amazing blog  I was very touched by her strength, honesty and spirituality.  I would talk to Paul about what was happening in their lives.  I could relate to so much of what she said.  I felt like she was my friend and I didn’t even know her.  I prayed for them.  I wanted Trent to live! 

Unfortunately (or fortunately for him because he had been through so much), Trent passed away early yesterday morning.  Strangely, the way I found out was not by their blog, but on facebook.  One of my dear friends (also a mission companion) had posted it on her wall.  I was schocked! I didn’t know that Cindy new Holly and Trent.  Evidently, they had become good friends in Nebraska.  Anyway, I called Cindy and cried and cried with her.  I told her that I have been wanting to meet Holly. Cindy told me what an amazing person she is.  I guess that now I will actually get to meet Holly.  I just wish it was under better circumstances.  I know that Holly’s heart is absolutely breaking right now!  Not to mention that there are five beautiful children that are going to be missing their daddy…sometimes life just doesn’t seem fair…

Paul will be officially retiring on disability in December.  His short term disability runs out in December and then we will be on retirement/LTD.  His health is not good enough to go back to work.  All the doctors have told us that he will always battle fatigue, dumping syndrome, and numerous other problems because of the lack of his stomach.  Obviously, retiring when you have a nine-year-old and six-year-old isn’t the ideal, but you do what you have to do.  We met with our financial planner today, if all goes as planned (won’t know for sure for a few months), I will not have to go back to work.  That in itself is a huge blessing!!!

I pray daily that Paul’s cancer will not return.  I pray daily that I will be strong enough to handle what comes our way.  I pray daily that Heavenly Father will forgive me for not always being as grateful as I should be. I do know that it is so important to be grateful for even the small things, but sometimes you just feel a little like having a pity party.  We really have been blessed throughout this whole ordeal.  God has given us amazing family and friends who constantly are supporting us and lifting us up.  

I think this post has gone on long enough…