the SWAY

Jenny here.  And its Day +681.  And it’s the 2^nd anniversary of Wil’s first stem cell transplant, that didn’t engraft.  It’s the strangest cocktail mix of feels; It’s a smooth glass of hope with a double splash of how-the-hell-did-we-make-it-this-far?  In some 50 days we will reach year two of the transplant that DID work.  I think back to that time…all those months that dragged on…Now the days seem to fly by.

Summer is nearly over and, man, have we been enjoying the electric bills, in our new smaller life, as Texas heated up to simmering 102-104 degrees a few weeks ago. I wish I could say that everything had a place and was in its place at the apartment…but…we are slowly chipping away.  We are installing shelves above doors for extra storage, still scanning and shredding hard copies of paperwork…still figuring out where things work best.  But it’s happening and we really feel settled, in the midst of some organized clutter.  The dogs are doing FABULOUS and seem to be more chill than they ever were in the house.  I attribute it to the fact they can lay in one spot and see/hear us at almost every corner of the place without lifting a head.  They get more time with Wil, on short little walks throughout the day, and they love the easiness of life on our little couch. 

I'm also loving that Wil can help with some things. He's even been more inclined to cook or help manage things around the house. And it's great that he can and that its at his pace. I know he worries about me working a lot...but he's still recovering and I feel settled knowing he's doing just that!

The summer has been busy too.  Wil finished his second class, post-transplant, and feels like he has a new degree plan in mind now.  He worked really hard and got an “A”!  I have been working like crazy, trying to get back up to speed at my private practice after hanging on for dear life for a few years.  I’m excited to finally have the time/mental capacity/want to update paperwork, set up an electronic management system, and even consider growing my practice in the coming year.  I truly have not had any desire or energy to consider such a task before this month.  And that, in and of itself, feels…normal-ish.

Yet the sway.  Normal-ish what?

I am not sure I fully feel awake in my own life.  For the first year of cancer, I felt lost on planet leukemia, but it became the new reality.  I figured it out and there was no choice but to keep walking and do a bang up job of it.  

Now I seem to sway. 

Between what was, what was after that, and what is now…or could be.

Wil is about the same.  Chronic pain and a heart of pure joy most days.  His mobility has been helped by the cane and he has embraced that assistance.  It helps him balance and avoid falls.  His new med cocktail for the pain management seems to be helping him manage better too.  Little improvements are such a big thing.

At his last doctor appointment, his white count had dropped below normal levels.  Now, most of his counts are still in the low average or slightly below normal ranges.  But his WBC had been WNL for quite some time.  The PA must have seen my face, and interjected with “the body can do weird things, no need to worry just yet.”

Sway.  

Familiar waves of feelings toss me around.  For all the normal-ish moments we’ve entertained this summer, it’s a punch to the gut to feel an instantaneous fear I'm that is so familiar.  His oncologist is not worried, or not enough, to schedule any additional tests or appointments.  So I know that’s a great sign.  But my little outlier, who was atypical before diagnosis…it’s also hard not to move back into a space of worry.  Every bump.  Every slight change.

Side note:  As much as life is slow and easy right now, we still have to check him for GvHD every day.  And GvHD at this point in time, is different than in the beginning months after transplant.  If you have had acute GvHD (as Wil did) you are more likely to develop chronic.  It’s the thickening and color change of skin.  It’s joint pain and stiffness.  It’s dry eyes.  Fatigue.  Or changes in breathing.  These, among other subtle symptoms.  So yes, go out and live.  Be free.  But not too free.  Remember that every day you have to monitor yourself.  And keep a careful eye on any changes.  It’s the sway, the two sides you bounce between daily, in life post cancer.  Cancer still influences our life at every turn. Even when life is normal-ish.

October will be his second anniversary.

I have a co-worker who’s little girl had a stem cell transplant and just celebrated her 5^th.  I almost laughed  at myself in even spitting out the words, “Do you feel relieved?”

No.  There is no relief in worry, just bigger expanses, larger waves, more gentle sways.  There is no eliminating the experiences or scars we are left, just a gradual, and greater tolerating of life as it is, and how it will probably continue to be. 

So yes, we are alive.  We are OK.  I am still quiet, mostly, as I am rocked back and forth by the experiences. 

But we dream now.  And oscillate.  We move in and out of the anxiety with less effort (most days).  We stay in the graces of moments with more mastery, and rest in the simplicity of the now when we can.  More careworn than airy…still…it’s a rhythm…and it’s our home.   He's my home. Which is all I truly need. 

Much Love.