Monday, February 23, 2009

One in a Million

I am going to have that printed on a T-shirt for my husband because apparently he may be One in a Million!

We had our appointment today with the hematologist/oncologist. I was expecting nothing much but that was not to be. Here is what we are now facing...

Three tests came back concerning.

Two weeks ago the doctor wasn't very concerned about the carcinoid cells. Now he is. The test for that came back "elevated". We don't know what that means at this point but more tests are being ordered. This is a very slow growing form of cancer, it could have been there 20 years so. Cat scans are being ordered right now, I'm not sure what's next. What we do know is that the current concern is the nodule on his adrenal gland. That gland sits on top of your kidney. The doctor assured me today that you can live a full life with just one kidney. Not sure I wanted to here that but ok!

Test number two is a little odd. He came up positive for something called lupus anticoagulant syndrome. This does not mean he has lupus. Actually I'm not sure I know exactly what it means but the doctor said it's treatable. They do not diagnose you with this disease until you have two positives so more blood work is being done.

Number three is a bit tougher. It's called paroxysmal nocturnal hemoglobinuria or PNH. It's usually not a good thing when your doctor is reviewing your record and suddenly says "wow". What he explained is when someone goes in for blood clot issues a battery of tests are run including this one. They never expect a positive because it is only seen in 1 to 5 in a million people. Most hematologists never see this their entire career, including Steve's doctor. A follow up test is being done. They shipped some blood via Fed-Ex today to Maine. Apparently a lab there specializes in this. It takes one week, we will know on Tuesday. Interestingly enough Steve's doctor will be traveling to a convention later this week in Florida. One of the items being discussed is PNH.

So here is how I am choosing to look at all this news.

1. Steve had all of these conditions and either God is going to heal him miraculously either divinely, through medicine and doctors or ultimately through death. Steve could have died many times over this past year and he didn't. I do not fear that as much as I used to. He truly is in God's hands.

2. The knee surgery/vocal cord injury/blood clots/tracheotomy all happened in Gods plan to reveal all this other stuff that we would have NEVER discovered otherwise and it can be dealt with. If all this had not happened it is entirely possible it might not have been found it until it was too late. Steve is only 52. Everyone keeps telling him he's young. If these are things that can be treated better to do it now than when he is older with decreased chance of recovery.

3. The tests are all wrong. Never know, we are talking about the man who had a suddenly re-grown appendix! I'm ok with this too.

There is a saying in the medical profession: When you hear hoofbeats you think horses not zebras. In other words you think of the most likely cause of a problem not the unusual.

It's looking like my husband is a zebra.


2 comments:

Jeff said...

Zebra or not, you sure have earned your stripes this past year, Steve. Keep pounding those hooves, big boy!

Kim Becker said...

Are you sure he's not just a horse in striped pajamas? Hmmm...