Wednesday, June 5, 2013

Just Kidding! Today is Not the Day!

So, we're not doing radiation today...  Turns out he was eligible for the pill trial down here, but he got randomized to be off the drug and to be part of the control group.  And we still don't have the results back from Salt Lake about the vaccine trial.  The oncologist down here called up there (which we think is part of why we were waiting in our room for most of an hour - even though it took 3 minutes to call us back) and we should - for real this time - have the results of that test by Friday.  Turns out we were misinformed, and Mark does need to be enrolled in the vaccine trial before he starts radiation, so if he had started today, without being officially enrolled, he would not have been able to do it (if he even qualifies, we still have no idea if he does or not - those are the test results we're waiting for, to see if he has the mutation that can be targeted by this vaccine).  He will still get the standard care either way, but now we know that if he does the trial down here, he will be doing it without the extra treatment.

So, just when we thought life would finally become predictable, it's not anymore...  :)  Welcome to the adventures!  Remain seated and keep your hands and arms inside the car and enjoy the ride along with us!

On a positive note, we got lots of stuff done today that we weren't expecting to have time to do, and we figured out why Mark seems to have shrunk.  He has gained enough weight with the steroids that he needed new pants.  I thought we had his size all figured out, but it turns out that I had mixed up some of the numbers (in my defense, Mark had confirmed them before anyone bought anything, but apparently his barely post surgery brain was not to be trusted as much as we thought).  I have been pinning up his pants for days.  At first I thought it was just a fluke or due to his posture, so I took in a little bit on his jeans in a pinch while we were out and I only had one or two safety pins.  Then I pinned that up a bit more securely when we got home and had more pins.  The pants were still too long, so I took them up some more (all with safety pins, my sewing machine is buried underneath tumor paperwork that seems to be piling up...  I'll find it again someday, but today is not that day).  Then I took up his church pants, then his other pair of jeans.  It was about to the point of being tragic just how much height he seemed to have lost (even though standing next to him I couldn't tell he was that much shorter).  Then I washed the jeans he wore to the hospital (I found them in a pile on the floor, so they missed a load or two) and for some unknown reason I decided to check out the size before I put them away.  Turns out that not only had we added a few inches to his waist, but also to his length.  I had upped that number by 2 inches...  It was quite the relief.  He wasn't shrinking!  We got him some new jeans today (ones that are the right size this time!) and he should be much more comfortable walking around, not having to constantly pull up his pants from under his shoes... :)

3 comments:

Jenny Gardner said...

Yeah for no shrinking!!

Sorry to hear that you are being told one thing by one person, only to find out something totally different by another....I think I would lose it on someone if that kept up, but you guys are more patient than me, which is probably a plus here. =)

Laurie said...

I'm pretty sure this is the first time I've ever actuallt HOPED that a family member would come out of testing with an official "mutation" diagnosis, but I have my fingers crossed...

Sorry you're still waiting for answers, but hey... at least now you know your husband isn't shrinking! (Pretty lame positive, I know.)

I sure do love you guys. Thanks again for keeping us posted!

Sabrina Gardner said...

Wow, what a crazy adventure you're on! The story of Mark's pants made us laugh, we're glad he's not shrinking and you guys are hanging in there. We love you, thanks for the updates.