Reality Fights

Jenny here. Gosh, I apologize for it being over a week without a significant update. We have both been posting on our Facebook community page with small updates. So,we hope you've been able to check out little happenings on there.

Wil is currently in the hospital, having been admitted for his chemo on Wednesday. As I sit here waiting on rounds, he is more than halfway done with round 2A and hopefully will discharge on Sunday or Monday, depending on counts.

What is better than that?  This:  Wil is...back. Positive, thoughtful, involved Wil is here now, asking questions, taking charge of his own treatment, learning to give himself insulin during his steroid induced high glucose days, inquiring about his cancer, alert, thinking about school. On Wednesday night, after he admitted, both nurses and I noticed his blood pressure was pretty good (compared to previous admits where it was sky high and he was anxious) and he seemed...calm. Quietly ok (that's equivalent to my dramatic super happy for my shy, sweet, naturally overly serious guy).

I mentioned it to him. "You seem different today."

In his Wil way, slow to speak, quiet, matter of fact confidence, he said, "I think I'm accepting this now."   Just like that, overnight, his mood and outlook has changed.

And then there's me. His polar opposite. Normally louder, less serious, pushy, fast paced, easily distracted. This is the moment I've been praying for for him. I don't how you fully accept a disease you intend to eradicate as quickly as possible. But that moment of surrender to what this moment is and is not...for the cloud to lift. I've been hoping for that. So I could take a rest and not have to carry the positivity load.

You can't push a mountain, and in my 14 years of loving Wil, I've long learned to give him space. Wil needs time and there is no rush. He won't have it and it won't create motion more quickly if you do. He has taught me so much about stillness. (I'm a better therapist and person because of him).

Sometimes our innate differences means I forge ahead on issues in our life looking more OK and optimistic than my partner in crime. I guess the cat is out of the bag now on that one because of this blog!!  I am so thankful, though, that in a good companionship like ours, we can take turns at emotional states, because while Wil has had a transformational week in his journey, full of acceptance, hope, and promise, I've been fighting with reality...a lot.   Feeling heavy hearted amidst all the hope I still hold onto.

I move in and out of despair and cheer, from sorrow to trust in what will come. The reality is, he can beat this. The reality is, he might not. Oh reality, you complicated, fickle thing.

Here's a Readers Digest condensed version of my week:

Last Friday I was flying high from his clinic appointment. His counts were good.  So good we could think about going out in a public place (gasp) with some precautions (mask, avoid crowds, take your own snacks, etc).

Saturday I felt the courage to look more into finding other people online with ALL (with no real luck).  Of course when he was first diagnosed I was all over the internet looking up facts and info about ALL.  Through the storm I had no time for any more research. And Wil has been an outlier so most of it was not very true to our story at the time anyway.  I felt empowered last Saturday so I got back online. I was left in awe that in 2013 Wil was one of approximately 2070 adults diagnosed with ALL in the U.S.  It's funny how that medical info makes more sense now because we are surrounded by it daily now. But, 2070 people out of the 315 million people in our country?  His nurse said she knows of just a few treated last year at UTSW (AML is the more common one...also the one ALL can turn into, if cancer comes back).  40% of adults beat it. That means over half don't. What?  I hate that. But Wil is my outlier. I pray he continues to not be the norm. Because the 6 out of 10...well, I'm not prepared to wrap my heart up in that reality. Yet there is no denying that we are just two people. He is one of 2070. With blood cancer you are chasing a moving object. It's out of sight but the journey continues. Most people reach remission. It's holding on to it...8 years to feel like you beat the odds....praying he won't be one of the 1000 plus adults that also lose the battle each year, that is what is absolutely daunting to think about.

Side-note: I read somewhere that about 750 people a year are struck by lightning. His odds of ALL?  Not too different.  Full of wonder. Full of questions. Yet feeling like maybe our life together is meant for more than what we could have planned...That this lightning strike might mean something bigger for us in this little ol' life.

Sunday we took my sisters kids to see a movie. Their faces light up around their "Unkie."  All of Wil's germ worries seem to melt and he looked so happy to do something normal. I felt so happy to do something normal. But snuggling there with the kids I had tears streaming down my face. I'm so sad these days that another generation of "Crouch" kids are living through the painful reality of illness. It never escapes me that I was my nieces age when my dad was first really sick. I know I'm over personalizing here. But I remember what that looked like to see my dad sick and in the hospital. I remember what it felt like. I wish I could bubble wrap them up and protect them from having to know this reality at such an early age...that people they love are not spared from heartache. That life can be scary. Guilty for dragging them along this rocky road. But grateful they are here all the same.

Monday Wil had a BMA (bone marrow aspiration or biopsy). Literally, there is a long hollow drill bit that they use to drill into his hip bone to get fluid and tissue to biopsy. Under just some numbing agents, Wil laid on his stomach while I watched them use an orange drill, similar to something I'd use at home to hang curtain rods, to drill in 6 inches.  Flesh, numb. Bone, however, has no way of being numbed. I sat there amazed, listening to the whirring and seeing him hit the bed repeatedly to help push through.  I find medical stuff interesting (I'm the person who ASKS to watch my own wisdom tooth extraction in college), yet I tensed and was sick to my stomach, knowing this would be one of many BMA's in the next 8 years, hating to see him have to endure it.

Tuesday I was deleting old voicemails while lying in bed with Wil, binge watching Mad Men. I played an early January voicemail from him. The only words that we're understandable were "I need help."  The rest, you could hear the pain, but you not make out. With a teary look Wil asked what it was he was hearing. At the time he was so frustrated that we couldn't understand him.  He had no idea how he had sounded. Or how hard it was to get 20 of those a day and not be able to do anything about it.  "Why do you keep those?" he asked. Artifacts...from a time I won't forget. Milestones for how amazing he is doing now. Things could be worse. They already were not too long ago. Pain and happy all at once.

Wednesday night, talking with a dear friend who stopped by the hospital, the realities of hoping for a family of our own really hit me. When you have such a long journey ahead, when do make a responsible decision about even trying for that?  And even adoption. You have to be years down the road and have proven health to be considered. It all seems so...unattainable if I really think about logistics and our age. 8 years. 3 for treatment. 5 more holding your breath that nothing else pops up. ALL, you insidious bastard, likes to play hide and go seek as well as morph into new blood cancers.  What are your plans for the next 8 years?  Still tough to wrap our heads around.

Daily fights with various realities. That's been my week. Can you feel the twists and turns, the curious emotional layers, of this roller-coaster?


**Disclaimer and alert:  I am going to use a certain word with caution in the next paragraph. Wil and I even talked about not using it at all.  We ask everyone to be silently thankful and respectful of where we are at in our process...because this is a complicated word and carries with it some powerful feelings. Please continue to send your love and optimism, but take a moment to think about how this word is multidimensional...a complicated duality we feel from this one little word. A word that is good, yes. But a word, a place in treatment that isn't necessarily static.  A word that in Wil's diagnosis and treatment is the first step toward vitality, not a last step. I guess what we are trying to ask is for folks to reframe from rolling out the red carpets and popping the champaign. But rather, to have a quiet thankfulness for just this moment. Free from expectations and goals.

So the big news of the week is that the preliminary results of the BMA fluid they took on Monday is that there is no detectable cancer now. "Remission."

I share this with hope and with gratitude to his treatment team.  The Jenny B.C. would have heard the "R" word and celebrated in a loud way.  "Congrats". "You did it."  "It's a miracle." Sighs of relief. It's different living through it.

The reality is with any cancer, but especially blood cancers, remission can come more easily than an all out "win."  The doctors say "there is no cancer detected now. But we know it's still there. So now we keep going in this direction."  They are not being negative, and I hope everyone can understand we aren't either. We have reached the end of mile marker 3 of a marathon run.  No noise makers and hats. Just...calm focus.

Early on, at the starting gunshot, we needed the cheers. We have needed love and received it and are still standing!!  We are off to a good start. We will accept as many "amens" as we can get!!  We will continue to need you even more in all the years to follow as we learn to live with cancer. As we pass this first segment of treatment (hopefully by fall), as we transition to the next one in year two, and then the year after that, and then to starting a new post-treatment life in 3 years from now with periodic checks and, hopefully, into that post 5 year sigh of relief.  Because that IS our reality. 8 years, at least, until we can say we beat the odds.  We are still in it, in the mental/emotional/physical battle portion. We are ok. We will need you even more toward mile 20.

I don't know if you remember that blog back when Wil first came home from the SNF. When he told me his new life basically would always include cancer. Remission doesn't mean your body returns to a state of B.C.  It certainly doesn't mean you ever emotionally come back to where you started out. Matter of fact. People find it sad. He's so smart. I only feel inspiration when I hear his words.

We will work to not live in fear, but the reality is that cancer is just part of our forever story now. Like it or not.  The miracle is in the middle, not the end. Wil is determined now. We focus on moments these days rather than long range goals when possible. There is no time to party it up, the fight has just begun. But yet not without profound enjoyment in little things. I used to see Wil less hours in a week than I do in some 24 hour periods now!  At the core of it, I now have all I ever really wanted.

Anything can happen. Anything. We haven't been promised an easy ride in this life. Just that we are not alone. Any of the possible realities is no match for the company you keep on the trip.

So here's where we are at and what we celebrate without asterisks:  He's tolerating the chemo.  It seems to be working. We are blessed. The love in our life seems to multiply faster than our hearts can keep up. And why we ask you all to live with us in these singular moments, to be with us in the stillness.  To be with us in all the forms that reality can take.

We fight reality a lot. We fight the tears. I internally try to prepare to be OK for whatever outcome whilst enjoying the ride, laughing, increasing my heart space for it all...continuing to fiercely love the only person I can't imagine a life without. I fight the darkness. I fight the urge to just be blindly optimistic because I know...I know in my soul that embracing all of what comes IS what this is all about, even if it doesn't fit the reality I *want* for our life.  Fighting to embrace new realities, learning to let go of old ones. And that is ok.

[ready for you all to insert a sea of Amens]

For reasons yet unseen, this is not for nothing. Much love my friends.