Wednesday, April 2, 2008

Are we there yet?

Can I once again tell you all just how tired I am of this whole deal? Yeesh...

Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)

The oncology visit held the promise of PET/CT results...

There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.

Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.

There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.

Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.

Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?

Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.

On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')

Please, pray for us. And I need to ping Dave again to see where he's at too.


tinkknitz said...

Dang John. I'm so sorry J is away for your anniversary. We would HATE that.

I believe Bree is home for a few days as of today but don't quote me.

As for the tired and fed up thing: your experiences guided me so much before I took that first step. Dealing with your own crap is one thing that keeps me going now. And let's not forget the assorted friends and family with medical needs which we have mentioned on our blogs. Now our Bree inspires you and I both ~ though I know we would wish that lifted from her. We pray for each-other and are all in this together it seems.

What a lucky bunch of sickos we are.

Lynn said...

Hi John - Greg's wife checking in. Sorry you didn't get all the news you wanted, especially being home alone. We're thinking of you. Hang in there!!!!! And Happy Anniversary!

Nittany Knits said...

Alex is looking forward to your man date Friday :-)

daisy said...

Just saw your post and wanted to say hi and hang in there. Found out last year at the age of 31, I had stage 3 colon caner which was followed by surgery and chemo, which ended almost a year a go. The journey was hard but I believe whatever doesn't kill me makes me stronger and that all things happen in this world for a reason. I don’t need to know the reason I just have to stay on the path and have faith. I also was diagnosed with Lynch Syndrome and was a little pissed to find out that my chance of cancer was 80% and no one ever said anything. Presently planning to get married in Nov 08 and have kids soon after because w/ Lynch Syndrome I also have a 40-60% chance of producing ovarian/cervical cancer. There are procedures you can have done to not pass this on to your children and I’ll be looking into that because the genetic doctor told me it’s a 50-50 chance. You are in my prayers!