Empty

Jenny here. I've been avoiding blogging. I've more or less been mulling over this post for a few days now and it's all a jumble.

I can't say why exactly. At first I told myself it's because I'm tired. After all, I said to myself, we have been at clinic 2-3 days a week (totally 15+ hours with drive time).  Plus the full time work and cooking every day the immunosuppressed way (meaning it's more time intensive for me, the cook, with more frequent shopping trips, more cleaning and prep time for foods, and not being able to eat left overs).

Then came the addition of Wil running a low grade fever on Friday night (me rushing home from work mid shift thinking we'd be in the ER), both of us scared.  He hovered around 100 degrees most of the night, but I'm happy to report it came back down...and then back up...and then back down. It meant a long night of hourly temp checks. And then Sunday morning it was back up...

Side-note:  Every clinic appointment they quiz us about the magic number. 100.5. See, with cancer, a 100.4 temp means start driving to the hospital because, with a bottomed out immune system, a 100.5 temp can be potentially life threatening.  They say to us:  "What's 100.5 mean?  Pack a bag." It could mean flu, infection, or a whole host of other equally not good stuff.  This will probably not be the last scare, I'd imagine. He's just been tolerating everything SO well it got comfy. But we know we are still in the beginning. This is our week 6 of 6 in the first round of the heaviest chemo. Many more rounds to go this year. With each one his body will be broken down a little more. We keep a packed bag in my car for Wil *just in case.*

Sunday morning we had an early weekend clinic check. WBC was up to .4 from .2 (normal immune system people range from 4-11) and a platelet count of 7 (compared to him being 110 when he left the hospital after cocktail B...and normal levels being >150). Thank you volunteer donor W035214106036 for the platelet transfusion while we watched the Illini play and had juice and crackers. The transfusions, we are told, will become more routine as we cascade further down the chemo rabbit hole.  The transfusions, combined with drugs for anti-everything (bacteria, fungus, viral) and the neulasta shot...they keep Wil going and fighting.

Today was another clinic visit and levels were looking up. WBC was 4.1 (out of neutropenia!) with platelets at 35 (we need 100+ before next chemo cycle). Liver is back to normal from this last round!  He is sleeping, eating, and getting around. Other than body bruises from the low platelets and neuropathy, he is feeling well.  So well, in fact, he DROVE to get tires on his car today...just a mile away, but the first drive in over 4 months. I think I may have felt what parents of teens feel. "Take your time. I will be right behind you. Don't play with the radio. Keep enough distance between you and the other vehicles."  How annoying I was today!  I am not sure I was actually taking in air anymore as he backed out. I know I prayed the whole way to the shop. I saw him bobbing his head to music (Wil later said "but it was Bruno Mars!  I couldn't help it!"), using normal acceleration. Heart. In. Throat.

But I'm so proud of him. I took pics of course. Like a first day of school. I haven't seen him smile that big in a long time. That trip for tires was a double blessing today. Bought with kindness from someone we love and a 2 mile round trip drive we will never forget.  It was definitely a cancer can't steal happiness moment.

So it's not that there is nothing going on or things have not been good...I've been feeling...empty. I think that's the word. It's the only one that comes to mind. Or at least in comparison to a few months ago when I was FILLED to the brim with emotion...now I feel kind of empty. It's the only word put on my heart to write about, yet, I'm struggling to be ok with it. Struggling to write a blog about it. I'm not sure I'm even doing the enormous empty space I feel any justice.  I'm certainly not completely empty, but where I used to feel so much, space remains.

When I looked at synonyms for empty, thinking I could find a less negative sounding word, I found vacant, bare, deserted, void, exhausted, etc. Yes, I'm tired. It goes without saying. The nurses remind me often I'm looking haggard when I am coming off a swing shift, sleeping 3 hours, then taking Wil to clinic for 5 hours (self care is an ever evolving challenge). But I feel anything but unfilled or hollow.

So I spent 2 days trying to convince Wil to write a blog entry, and let me off the hook, about the week and his perspective.  I want to know that side of the coin as much as everyone else. I told him to just start, that it would be good for him, that something would come up, that it's all about the process of just putting it out there. Yet, I was not about to do it myself.

Strength. Faith in things possible. Belief in goodness, present and future. I'm finding they look and feel and behave differently at every turn. A few years ago I might have argued that faith and love couldn't dwell in emptiness, yet here I am. At the intersection of both, and encountering empty.  Every day there is something new to experience in this journey. Even when you don't want to.

Side-note Dos:  At these crossroads, I think about my dad even more. When Wil can't eat tomato products I remember how diligently my dad worked to relearn his love of ketchup after his radiation. He knew he loved it. So he kept eating it until that small slice of normal was his again.  If you knew my dad, or some of the rest of us in our house growing up, it was THE condiment of choice.  Out of no where this week I was reminded of a silly "ketchup song" I sang at church.  Thirty years later it means a little more to me than just a fun song about my favorite sauce. "I wanna be filled with the spirit, I wanna be used full and free, but I can't be filled with the spirit, 'til I'm empty of me.  So pick me up, take my cap off, turn me upside, whack me on the backside lord and pour me on the ground. Goosh, gosh, goosh goosh." (Complete with Sunday school choreographed moves of course!). Whack. Cancer. Instant re evaluation. Jenny, Goosh, goosh, goosh. Floor.


The thing is, my life was so very full before cancer. With love and good, yes. But with so many other things that were not serving me as well. Too full. Crammed, overcrowded really. When Wil got his diagnosis, my very first thought was "he may die alone while I'm working my crazy hours. I may lose him but also lose out on the time we have left." Cancer emptied us of dreams, obligations, guilt. Emptied us of the self made expectations for this life.  Opened us for a whole new ending.

See, I'm a little more empty every day. I'd never wish cancer on anyone. But I do hope there is a moment in your life of this...of being expanded, torn, pulled under...of being readied for the next unknown lesson...of being unburdened of the things that just don't matter...casting off expectations so that something new and unplanned and lovely can find a home in you.  It doesn't have to be cancer. I think I was just bull headed enough I needed more than a gentle whisper.
It's not pretty though, because in the emptying process there is so much anger about loss of control. For patient and caregiver alike.

Cancer, one of life's terrifying, surprising riptides. Disorientating moments under water, when there are no more air bubbles to blow, no air left to hold on to, seeing surface is there, longing for air, but suspended, empty lungs, while pulled further and further from the shore you know.

That momentary nothingness, on the edge of everything. Painful, scary, the enormous crushing weight and power of the water around you. Will I have enough to sustain me until I safely emerge?

The emptying is counter intuitive to love and faith but required all the same. The pause, the whack, the goosh...the lesson to struggle less, to swim away from your original plans and instincts so you'll be carried along to where you need to be...realizing there is more oxygen in you than first sensed, and that being pulled is a lesson in trust you can't find without strong currents. A place of quiet surrender to the motion of life as it is right now. But more importantly, a stillness, a place of just enough, emptied of extra weight.  Knowing your nose will breathe air again and be filled.  Saved.