Release

Jenny here.

I don’t know her, but I knew her.  I was her, and strangely enough today, walking back into the oncology building, I was still her.

I won’t bury the lead like some food blogger, recipe 17 page scrolls down.  This morning, like so many mornings before, but not many lately, we drove to Dallas--on too little sleep, empty stomachs due to fasting labs--fueled by my favorite kind of anxiety, the denied.  No digging needed here, so if you are not up for emotional rambling tonight or if the rest is boring, you don’t have to read further—today we had our last oncology appointment.  The proof is in the numbers, Wil has been released from BMT.

All month, and especially this week, insomnia has been my long lost friend, come to stay.  There has been work projects and family things to worry about, so my usual story line, “I’m just really busy,” was in full effect.  Wil is different, but similar, under stress.  We’ve been easily irritated with each other this week for “no apparent reason” (are you laughing with me yet?).  Which made for a silent car ride through morning rush hour to UTSW BMT clinic.  Not necessarily angered with each other, just in our own heads.  Clearly, no stress at all at the Clark house!

Side note:  If you are an enneagram person, Wil is a 5, I am a 7.  We look very different under stress, but both of us turn inward to our thoughts and over analyze every detail before we come back out.  We are head first, then heart and body aware.

Pulling up to the building, I am always blown away by the fact that cancer levels the playing field—every kind of person shows up—all ages, backgrounds, races, personalities.  It’s not like a PCP office where yes, many people might have some similar diagnoses, but it could be super diverse.  At oncology you KNOW why everyone showed up—to try to live.  And, so, when the couple in front of us got out of their car at valet, while they looked nothing like us in any way, I still knew them, at least a little.  As she asked for a wheelchair for her husband.  While she gently guided him out of the way of another car and explained slowly.  While he looked alive, but exhausted and weak, and not quite tracking the conversation.  I saw them, and I kind of wanted to look away.   But I knew them.  We were them in a different life.

In the Universe’s wisdom (or maybe mocking?), by the time we had made our pitstop in the bathroom,  past the orange Chihuly, past the ambulance bay that I used to wait at for Wil when he had to be transported from the SNF, past guest relations where I no longer recognize faces, past radiation, to the bathroom I have used hundreds of times there, where I have waited outside for Wil, envisioning he had fallen and bleed out because he was taking a few more minutes this time…into THAT bathroom, there the wife was again.  Washing her hands.  Tired.  Looking in the mirror.  Saying out loud, what I have said so many times before, sitting on one of those damn toilets, or crying at the bottom of my shower:  “You can do this.”

These are moments that feel so private, yet so shared.  I looked into the mirror and smiled her way.  I said, “Me too.  I’ve said that in this bathroom so many times before.  Just not as often now.”  She smiled back, and genuinely said “that’s great news.”

We kept passing them at different moments in the process.  At the blood draw, at the waiting room.  I listened to her chat with others.  I used to do that too.  Pass the time with a bag of books, sketchbook, craft, but often in my weariness just move on to idle chit chat.  It’s different when you know this chapter is closing though.  This morning I was equal parts wanting to run, take it all in, to smile, to cry, to just be…I wanted to see it all and also look away.  Holding on, holding back, letting go.

The appointment with his oncologist was medically unremarkable.  We caught her up on life.  She reviewed labs that are better than they have been since transplant, with even some improvement on the kidney function.  We talked about all the medical specialists that are still needed ongoing, to deal with this new life that chemo and treatment has given us—a new body that has pain, needs constant monitoring, and yes…has given us extra years.  It’s a mixed bag we fought hard to get and carry.  And grateful that we have this mess to share.

He is still 100% donor DNA.  It is very rare that the leukemia will come back, if cancer comes back it would most likely be a secondary kind, hence the monitoring.  Transplant wise, GvHD or rejection is no longer a threat.  Her work with us, and with BMT…is done.  Released.  Forever on her caseload as an open appointment, but no set date to see her again.

I hate crying in public.  And I didn’t want to lose my shit there.  I sat silently, eyes filling with tears, Wil said to her that the win was because of her and me.  We both shrugged.  I’m not sure either of us takes compliments without some discomfort. But he looked at her again and said, “You saved me.”  Those words, it was all I could do to not ugly cry on cue.

She said to send her a picture as life moves on.  If only she knew, that every picture I have taken for 6 years—of our lovely, sharp shards of a mosaic life--a piece of that joy and our love is sent her way, along with all the UTSW faces we have met.  You changed our life.  Not just through your science and skills, but through compassion, straight talk.  You acknowledged how close it all came, several times, so I didn’t feel absolutely nuts in my fear, when I knew family and friends just couldn’t understand it the same.  And you always did with it with resolve to keep trying.  None of this positive outcome was for sure, but I was never alone.  Our love and life, our story, forever entwined.  No thank you will ever do.  And since I couldn’t say that in person today, without fear of my heart breaking in the BMT office, I hope you know it all the same, and understand your life has kept Wil’s life in mine, something I will always carry with me.

Anti-climactic is the best way to describe how I am processing things tonight.  As we walked out of clinic, people mentioned how nice it must be to not come back.  But personally, I have been dreading this moment for over 5 years.  We are over the moon about Wil’s progress.  We are adapting to life post treatment with chronic pain, follow ups, metabolic issues, etc.  We are learning each other again.  It’s just hard to say goodbye to the people who changed the course of your life forever, you know?  Even the strangers who you can smile at in the bathroom mirror and know, without a shadow of doubt, that you’re not in this world alone, or crazy, or a woman on the edge—without explanation, these people get you and know what it’s like to just want one more day on this earth with your person.  And you’ll fight like hell against anything or anyone that tries to get in your way.

I knew this day would come.  It’s a special kind of grief though, saying goodbye to this space.

We came home and slept today for several hours.  The peace tonight is knowing that we can release some of our energy back to living (maybe even discovering new paths) AND that our time on the inside cancer ride was not wasted, as we extend some energy to others.

See, there will always be faces in mirrors to smile at and knowing nods to give someone swirling in the middle of emotions.  And they often won’t be strangers, as cancer doesn’t seem to rest or skip over family and friends.  So, as I cry over the celebratory seafood dinner (one we couldn’t eat for 2 years through treatment), I promise…I promise, promise, promise, to not forget what it feels like to only have your nose above the water line, treading water.  And that a simple, non-fixing, but all-knowing kindness, can release an emotional life jacket to another soul.  I pledge to not look away when there is pain, but to say, “YES.  Yes, I feel you.”

I know that’s the kind of love that kept me breathing, time and time again.

Much Love.