Embraceable Actual

Jenny here. Please forgive the lateness of this update.  It's been a busy week.

Wil had his 2 week follow up with the bmt oncology clinic on Thursday, complete with labs and plans for the near future of his treatment. His liver numbers, all except for the bilirubin, are NORMAL!  But even the bilirubin is at 1.7.  A mere .7 from the target point. Other counts all looked great too. They did need to add a potassium pill and a beta blocker. The latter to try and lower his heart rate. My sweet guy's heart is always at 115+ pulse rate due so much panic at times. Tensing, sweating, hyperventilating. Each day is a big unknown in his mind. He had a chance to meet the oncology psychologist and will start seeing him periodically for support. I'm glad because I know he doesn't want anxiety help from this social worker ;-)

Seeing his worry at the appointment, his sweet oncologist came alongside him, put her arm around him and said "talk to me sweetie. Tell me about your worries". They are so kind and compassionate there. Bottom line of appointment:  Chemo to commence in 2-3 weeks!

A small victory for me was filing a grievance on the SNF. They finally realized the had never verified his SSN and DOB. I had wondered how they would bill insurance without it. Funny thing, I received our bill yesterday from them. A zero balance (that should have been over a thousand dollar total copay).  Take that SNF who treated my baby wrong!

If people were in my head throughout the day this week, they would find a whole lot of clutter, noise, and questions.

The question that is lingering, maybe even hovering, over me this week is, " How do you embrace the actuality of your life?"

I'm hoping I'm not alone here when I say I've spent a lot of time and energy in my life embracing what I have no power over--the past and the future. At times it has left me with very little time for now. The now is in my face all the time lately. In 2-3 hour increments. In leaps, and inches, and stillness.  In hearing him laugh spontaneously and out loud for the first time since Thanksgiving watching the Tonight Show. The here is up close and personal in helping him care for and relearn basics.

There are so many contradictions in caregiving. There is no place I'd rather be than home.  I drive FAST to rush home. Then sit in the driveway trying to get strength to start it all again.  I ride high on little successes like Wil putting on his own shirt with little help, then sob at the bank counter for reasons I can't explain. I look around and think, how lucky am I and in the next breath think how did we get here. I'm exhausted but I can't sleep.  I write these blogs hoping they will mean something to Wil down the road but am tired of hearing myself.

I don't think I'm alone in having spent a lot of time waiting for the next big thing or life event to send me over the top into happiness instead of taking the actual, adding a dose of wonder, and curling up peacefully next to it.

I've been more frustrated lately. With everything and nothing. As much as I try to stay toward the center, a lot of this is agitating. A lot of relationships that surround us are hard. I'm not always the caregiver or person I'd like to be. I want to hurry up through this part just as much as he does (and even while I'm telling him to slow down and be patient)!  I just haven't embraced it all yet.

Ironically, I cried into Wil's shoulder yesterday while trying to calm him down. I said "you know what sucks about cancer?  Everything else!" He looked at me strange. No one wants cancer. Gosh, the "big C."  I've come to accept it. Embracing cancer was a first mini step for me (Wil may have a very different view here from his perspective). I didn't know it was everything else I would resist. Cancer experienced in a vacuum, the place I'd like to put Wil, it just a medical issue to treat. Role changes, time, money, brokenness, relationships, family, loss of independence, drama...the everything else is what I'm left to sort through and work on creating a space for in my life and heart.  The actual life I have been given the opportunity to live is not the one I want to embrace but that one I must embrace to truly be happy.

I tell people in my work, "there is nothing to change, nothing to fix.  Breathe."  I help them come to a place of heart expansion. Opening up their life to make room for all that's here instead of spending so much energy avoiding. Embracing  the actual.  Today that made me realize why Wil in his unknown wisdom made me promise to keep writing. To make and keep a space for all the actualities. I'm still just as anxious to hear from him what these few months have been like as you all!  Until then, and while I'm in the middle of my own heart expansion, I'm embracing him and as much as I can.