Smile

Jenny here.  It's almost the end of July!  A few quick updates to share.  Monday and Tuesdsy were D days and donation is complete!!  The donation process, 2 weeks of multiple appointments for Wil's family member, is done!  The final cell count is not back yet. They use a math equation to determine the ideal amounts for Wil based on his body. The aim was a measurement of 5 (but in actual cell numbers would be in the millions).  Hopefully there is enough. At this point it is what it is, but they are telling us it looks good.  The cells are off to the lab and being programmed. We have a few more appointments for Wil to be ready for admit, and a few more steps (chemo and radiation) once admitted before day "0", otherwise known as transplant day. But it's all underway. We are so incredibly grateful for the donation and are keeping hopeful this will be a cure.

Although we've watched all the videos of other donation stories and had been prepared for the donation process, it certainly was a learning, heart wrenching process. That story is for another time and place, but someday I hope our experience will help comfort others. This is life, not a lifetime movie, and it may be some time before we move through the emotions of the last few weeks. In truth, maybe way past the transplant day, because now it's time to focus on that. Wil hit his lowest point last week under all the stress, but he is at a new place and focus this week. We are slowly checking wants off the to do list with movies and outings, seeing friends and family as people are able. In truth, finally using up some of the amazing gift cards to restaurants and movies we've had sitting here!  It's been fun to be out with him. Soon enough we will start the long journey and life restrictions over the next 12 months. And that list is long.

Wil and I, by nature and by our birth order (oldest children), tend to be people people. People pleasers. Responsible. Prepared. Ok, maybe also overly bossy or at least appear that way at times. Some even think those traits equal judgmental. In reality, we just like to plan ahead, think things through.  We are opinionated, I will give you that!  We have deeply over-thought things through and come to a place of peace by the time anyone knows what we are thinking (these blogs are not written on a whim, they are the result of countless hours awake at night, sorting through my own shit, racking my own brain about the meanings of facts and relationships).  We tend to be leaders as first born children. We may not follow where someone else goes, and even disagree with it, but we are also OK with everyone living their best life for them because, at our core, we want to protect and make everyone happy. 

Side note:  The single biggest issue I have with dear Mr. Clark is his need for harmony. How he will crucify himself if there is even one person he loves that is not happy. How he will sacrifice himself and his feelings and his own health to let others be happy and keep the peace. It's also the thing I love the most about him. It's why people love him.  There are so many moments I melt in his genuine love for others. You can love him, hate him, like him, scream at him, take him for granted, attack his character...but at the end of the day he still holds people in love no matter which side of the coin. He will still kiss a forehead and cry and wish he could have done more to make a situation he has no control of different.  Over and over again I know, without a doubt, why I married him. He is goodness, integrity, honesty, and light.  No one is perfect in actions and, given any sit down conversation with him he will be the first to tell you that, but in heart?  He is pure and can find that same purity in others.  Sure, people might say I'm kind, but I learn from him every day how to love a little deeper. His capacity to see people and hold them in his heart surpasses my understanding. 

So much of my life, although outspoken person that I can be, I have struggled with guilt as an older child. Taken on too much responsibility for situations. Held things together, maybe, just maybe, too much and too long...hoping and praying and thinking I can make it better for others by sheer will power. Time and again I have found this:  I can't make life happen for anyone but myself. I can't make people happy who don't want to be happy. And I can't get someone to love me who doesn't want to see my inherent worth, no matter how hard I try.  So the universe, in this particular year of my life, seems to keep giving me ample opportunities to have my faith rocked. Not in the way you would think. My faith in divine intervention, our hope, the trust in the goodness of this world...those don't seem to waver as much as my faith in me and my worth. 

You see, the disease part of this journey isn't the hard part.  Cancer is not the hard part for us. Does that make sense?  I'm not sure it can until you are faced with something like this, but hold on to this in case you do find yourself in our shoes.  When I talk to other caregivers and patients, this is what I hear over and over (and so I feel I have confirmation that this crazy idea is reality for many):  illness is not the hardest part. It's everything else. It's everyone else. 

Disease is a medically managed, or possibly not manageable, part of this experience.  There are guidelines and plans and plans about plans. They don't all work out, but your care is mapped out in a logical pattern based on those who have gone before you. Medically, everywhere you turn you find a reason and a support. The clinic and the hospital are our safe zone.  The procedures are painful but always have a specific why that can be answered in the here and now. 

Our relationship to ourselves, to life, to others...the relationships are the hard, heart wrenching, puddle of emotion on the floor parts of the trip. They shake us up, strip us down, and cause pain for sometimes no explanaible reason other than this is just life...the why is often somewhere in the distant future. 

Disease is disease. It's not personal and doesn't discriminate. The actions and messages and issues and human energy the swirls around us, the sometimes uplifting but also sometimes dagger energy, is what is hard to sift through without hemorrhage of heart.  There are so many moments where we question ourselves as the arrows are thrown. We know we are not perfect but we try do our best and given the load, I'm proud of how we are surviving. it's all we have.  It feels shattering to have that basic human worth, the central heart space of us, questioned, even though I know it's not my place to have all the answers. 

I write this blog to process all the mud and muck and come to a place of peace. This past week taught me that even when I am just in process, people may take this process personally for them, instead of just a general "aha" place for me. I hate to break it to you all...this blog is all about me and my journey as a caregiver. I hope it speaks to others in a tough spot, because I'm not trying to teach or scold at all.  At the end of the day, it's my work, my purge of emotions, my trek through the hard parts--for my own survival. This is not a cancer patient blog. It's a caregiver blog. It's how I stay vulnerable and visible to myself when all of me just wants to curl up in a ball and hope I wake up to a different set of circumstances. I'm honored anyone else has stuck with the ups and downs and kept reading!  I'd still write it even if no one did though. 

On Saturday morning, after a few rough emotionally packed days, I woke up with a song on my heart. Does this happen to anyone else?  Have you ever heard a song for years, or maybe your whole life, and then one morning, as you wipe the crust from your eyes, look over at your sleeping love bug, and think about the week in retrospect, just have a a familiar song bubble up?  And not only that, but bubble up with meaning to your life it never had before?  

I'm sure it's one you know, so I will let the song sing it's self through the lyrics:

"Smile though your heart is aching

Smile even though it's breaking

When there are clouds in the sky, you'll get by

If you smile through your fear and sorrow

Smile and maybe tomorrow 

You'll see the sun come shining through for you.

"Light up your face with gladness

Hide every trace of sadness

Although a tear may be ever so near

That's the time you must keep on trying

Smile, what's the use of crying?

You'll find that life is still worthwhile

If you just smile"

You know in all my years that song, in it's Nat King Cole version that plays in my head, has always made sense...in my head. Waking up after a week of soul breaks, picking up the pieces of self, gluing me all together and seeing my worth, my warmth, my goodness, even when others don't...this song for the first time hit my heart space. It's not about putting on a happy face and pretending to be anything you are not. It's not about denial of the Ick factor that presents itself to say otherwise. There are so many feelings packed into those few lines. 

No, it's not about faking it. It's about choices. 

It's about taking happiness as a personal mission. It's about confirming your own worth. It's about not waiting for the pain to subside to let life fill with love and hope again.  It is the fact that choosing to greet your life with a smile is here and now and even compliments pain, agony, doubt, fear, and anger quite well. Happiness is not the absence of those feelings, it's the acceptance of all emotions and the choice to move forward. So we smile as a nod to our authenticity and worth and to the questions still unanswered. We smile to inherent beauty of ourselves and those around us inspite of imperfections and hurt. Just a few more things cancer, or any part of it, can't steal.  

Sweet Mr. Clark, I get it now. I somehow can feel why you keep smiling through all the Ick without complaint. And I feel honored to be along side you through it all. You my hubby, will always be my favorite human. 

"That's the time you must keep on trying

Smile, what's the use of crying?

You'll find that life is still worthwhile

If you...just smile"