My life is never going to be the same.

6 months ago. 1000 changes since. Most of them for better, all of them good.

In the past 24 hours, I’ve twice been told that my life will never be the same. 

Mom heard it the second time and asked me how I processed that idea, that there was, in fact, no going back to the life I once had.  No longer holding onto the “taking it back off the shelf” mindset that I held in those early cancer days. With relapse, that whole idea of seeing a problem, solving it with grace and positivity, and moving on feels laughable.  and not just because of how linear that ideal is for such a non-linear, non-sensical, all-consuming experience as staring at death in the face and being brazen to think you won’t be shuttered and shattered by it. The foolishness is a defense to avoid the shock and the fear. Imagining all that can be (will be) extinguished from my old life, the life I was head over heels in love with, and walking barefoot and bald into an uncertain future is too much to process while still needing to cook breakfast and get to appointments on time. Speaking of extinguishing, nothing extinguishes a good old fashion existential crisis vibe like the 37-step process to see your oncologist the Tuesday after a holiday. There is no time to panic about death when you’re panicking about 80 80-year-olds navigating a parking garage. 

Bone Marrow Transplant (BMT) is infamous for long recovery times and long-term side effects. Most recipients are readmitted within the first 90-days with either an infection or treatment needed for Graft vs. Host Disease (GVHD). Most GVHD symptoms are skin or gut related and present as rashes or diarrhea and need to be addressed as soon as they are discovered to prevent needing long-term care. In some ways, as a BMT patient, I’m hoping for a little GVHD as it’s a sign that fusion is successfully happening between you and your donor; but you only want the sweet spot. I ask every nurse I trust what GVHD is like as a patient, and the stories aren’t…great. I ask every nurse what I can do to prevent it, and again, not an answer I want to hear because the answer is…there is no answer. Every person is different. My gut flora was wiped out. My immune system was wiped out. Yes, it’s important to know the signs my unique body gives of trouble, but it’s more important to know the signs of GVHD as my body is no longer what it once was. In short? I’m a tissue cyborg now. A ti-borg. (also, doesn’t Ty Borg have a TV show slingin’ remodeled houses at people - the “MOVE THAT BUS!” dude, right?) 

Curiosity led me down the path to today's big question: how do I live knowing my life may never be the same? That I may spend chunks of my life inpatient and these chunks may put an abrupt halt to any other plans I’d made in an active attempt to move on. If BMT doesn’t work, will I be on chemo until chemo just doesn’t work anymore? What if movement remains limited or my infection risk grounds me to the house or I can’t really make any serious plans without a bailout option? What if the quality of my life tanks? Who is Hayley without movement or sight or freedom? 

Woosh!!!! Feel that avalanche? That is anxiety tightening its beef stick fingers around my body and squeezing. 

And WHY is this banana here?! Add it to the unknowable questions.

It’s tempting to counteract this little “what if” session with a “what if everything just, like, totally works out” session, but that doesn’t do it for me. Before I can begin to really tinker with any major question, I ask myself a few easy ones first. Hayley, have you slept enough? Hayley, did you do your morning routine? Hayley, what will be gained by you facing this question right now? Is this the right question, the wrong time, or the wrong question? 

Okay, okay, okay. Have I slept: kind of. But I feel energized in a non-manic way, so I think I’m good. Did I do my routine: yes. In fact, I found a nice little wisdom nugget from Montaigne from today's books, “He who fears he should suffer, already suffers what he fears.” Cool. This helps. Not fearing what hasn’t happened. Okay, next. What is gained by asking this question: I’m about to walk out of this hospital in a few days into the heart of this question which is really a question of how I will cope with an uncertain future. It seems like the right question, it seems like the perfect time. 

Q: So Hayley, how do you move on with living knowing life may never be the same? 

A: Short answer? Fine. Because I’ll be alive. As long as my quality of life is satisfactory, holding it up against the pain of life and living longer is on the table, baby gonna keep living. 

And who freakin’ knows! I don’t know, maybe it will all be smooth sailing. Maybe I’ll be the ultra-running, business-owning, baby bangs-wearing woman I used to be, or maybe I’ll become someone I love even more, or maybe it WILL be really challenging but nothing I can’t flow through with a little help from friends and all the streaming networks. Lest I forget that I was never going to know what would happen anyway. I can say with confidence not a single one of those conversations in my head that I’m having with a co-worker tomorrow EVER happened like I role-played it. Life just…happens. New data is presented, and I work with that data and new decisions are made. I said from the beginning I reserve the right to change my mind about any beliefs at any time because the more questions I ask, the more there are waiting for me, and sometimes the questions just cramp the hell outta my style where I’d be better off releasing my fists, laying down in the river, and flowing along. 

I will not suffer from the fears that I may suffer. Dang, Montaigne, you nailed it, buddy. 

BABY BANGS!!!