Dead Reckoning

There really hasn't been any major events in Jen's condition over the past week.  Her pain has migrated from her left to her lower right which is a bit of concerning.  We're not sure why.  But except for a few bouts of nausea here and there and pain now and then she continues to improve.  Or at least she's holding steady at this positive level of activity.   Dr Santana is convinced that it's due to the medication.  Whether it's due to the Xalkori, positive thinking/energy, or everyone's prayers I don't know.  Whatever it is we hope and pray that she continues to improve.

If someone were to see us right now they'd think we were lying about her cancer.  I honestly think that.  The kids seem unphased.  Most of the time Jen's doing the normal everyday things she did before. Laundry, cleaning, getting the kids to bed,etc.  The "normalcy" of it is surprising given the situation.  I keep asking myself, "Is this how it's like for everybody with cancer?"  Because she's doing this well, do we just keep going on like nothing significant is happeing?  Did the last few weeks really happen?  Are we spending enough time together?  Should I be more optimistic/pessimistic?  Should I be scheduling a family vacation cause she's improving, or hold back cause we don't know the future? ... It seems I have nothing but questions for everything

Jen's next CT scan is on the 23rd of July.  At that time they'll measure the tumors to confirm that the medication is indeed working.   Until that time, we just have to take it on faith that it is.

Somebody mentioned to me this is like flying on instruments.  I disagreed.  I'd consider the CT scans and all the labs "instruments".  This is like flying above the clouds with no panel.  Yeah, we're flying, we're under control, but we're going through each day just on dead reckoning.  Flying a heading, and when the 23rd comes around we'll decend back through the clouds and hope we recognize what's down there and can come up with a plan to deal with it.

We spent the 3rd and the 4th seeing relatives in northern Wisconsin.  Driving up on the evening of the 2nd we passed through one of the most violent rainstorms I've ever driven in.  The noise in the van was deafening, visibly was extremely reduced, and everyone was nervous whether or not we should stop or drive on through. This may sound crazy, but I saw it as the perfect metaphor for what the Engel family is experiencing right now.  The amount of stuff we're processing is deafening, we don't have visibility into the future, and everybody's scared.  I turned it into an unexpected teaching moment for the family, especially myself.  I drove through it, even though I was uneasy about it, because I knew what was waiting on the other side of the storm if we made it through.  I was right.  The whole family saw the rainbow just before we hit Oshkosh.  Good thing I was up front, otherwise the kids would have seen the tear.

A good portion of the stay involved bringing friends and relatives up to speed on Jen's condition.  The conversation is standard routine now....  yeah, it's stage four... yeah, it's hard to tell by looking at her... yes the kids know... and so on.  On the one hand you want them to know everything and answer all their questions,  but on the same token you're tired of answering them. It reminds you of the seriousness of it.  Kind of makes you feel guilty for wanting to withdraw and stop talking about it.

Because of the extreme heat she's been staying indoors.  She's the smart one.  I completely fried myself.  For a little while I let go and was completely absorbed with the kids out on the lake.  Unfortunately, that meant I forgot to put on sunscreen.  Since I was in and out of the water I didn't realize how burnt I was. ouch.

Last weekend I spent some time with a trusted friend talking about our respective situations.  It was reassuring to hear that someone else was successfully navigating their "messy" situation.   You know who you are.  Thanks.