Coming off a full-day stint at the hospital getting two units of blood yesterday and mentally preparing for VTD-PACE round two. I’m at work, so I suppose given that measure of wellness I’m OK. My mind is mush, however.
What do you think about when you’re hooked up to the IV? I try not to think at all, but reality creeps in when I’m not 100% distracted. Have I had too many transfusions? Is this sustainable?
And how did I get here?
Even for those who have had cancer ruin someone close to them I think it’s hard to fully understand the struggle of living like this. As a lung cancer blogger I follow recently noted,
… there is no post to our traumatic stress. It is ongoing, or OTSD.
We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.
Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?
As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.
So well put it’s almost criminal.
I’ve been feeling the sheer WEIGHT of it all lately. The frequent transfusions, the “this better work or rut-ro, Shaggy” chemotherapy (VTD-PACE), an upper GI problem we’ve been trying to nail down, the “fatigue” combo of the chemo drugs + Myeloma + low hemoglobin, yada yada yada. It all has seemingly teamed up to test my mental and emotional fortitude. I’m not even sure how to describe it except that I imagine it’s similar to being in prison for life — you have to adjust. THIS is the definition of your life now, the new normal. The anxiety of the next blood test, the realization of how precarious your life is and how sick you really are, the never-ending doctor appointments, mountains of prescriptions, etc.
It’s a lot to take in, and sometimes it feels like I’m carrying a second me on my back. I think I’ve used the analogy before but at times it’s like being in a snowglobe that someone (God?) just shook up for no obvious reason.
Life going OK, Rich? Here!
*shake-a shake-a shake-a*
Now try it.
I go back into the hospital on Monday for VTD-PACE round two. I’m a lot less nervous this time given how the last cycle went, but I can’t help but whisper a quiet “WHAT THE FUCKING FUCK?” to myself in the late hours of the night when the silence of the wife and daughter sleeping and the muted crackle of what I’m inhaling is my only company. My mind transcends, giving me a perspective that is at once both intriguing and depressing. Questions flutter through my mind, epiphanies coming in such rapid succession that it’s hard to grab a hold of just one for too long.
How many have sat where I sit, wishing for a cure but knowing every single person who’s ever had cancer has wished the same? How’d that work out for them?
How much longer can I do this, really?
Is it wrong to wish sometimes that the cancer would just fucking win and I could be done with all of this?
Where the fuck are the Korean BBQ potato chips?
I think the transfusion thing is messing with me lately. My wife, my parents and even I have started questioning how sustainable this is when I’m needing weekly red blood cell units just to survive. To SURVIVE. That’s a little hardcore, but it’s the truth. The simple reality is that my disease reached a point this year where it was either “kill it with fire” or, most likely, start dying in earnest. As a result these things, this chemo, the blood, etc., are needed. Weekly doctor visits that turn into all-day transfusions, monthly IViG infusions, Zometa infusions, the daily cabinet-worth of prescriptions. Sacrificing, in various ways, the future for the present just to have a chance to experience that future.
Sorry, I’m probably supposed to paint a rosier picture of being Doomed, aren’t I?
I’m not in a terrible mood, really. I’m unhappy, for sure, but who the fuck is happy about having cancer? OK I know some people play the “cancer has improved my life” card, but that’s a minority in my experience. It’s not something you can just ignore unless you willfully ignore it. It’s always there, tainting everything it can get its insidious little claws on. It forces constant reflection, questioning, fuels bizarre and dangerous at times thoughts.
I flip through my Twitter feed at least once a day, noting what’s on everyone’s mind in this horrible little world. One theme that comes up a lot is whether or not it’s OK to use combat-related terms to describe having cancer. The objection, if you couldn’t figure it out, comes from when someone inevitably dies from this — nobody wants to think of those folks as “losers,” you know? But it is a battle, for every fucking inch. Physically, mentally, emotionally, daily. That’s the part that I don’t feel equipped to describe, at least with simple words on a screen.
How do you do it every day knowing there’s no end in sight, no relief coming?
How do you get up every day knowing that and function as a “normal” person, a father, a worker drone, a human being? What do you do when something takes away your future and writes you a new (and horrible) one?
I dunno. So far I just fight. I take it day by day, as I’ve learned through going through this, but you can’t stop not thinking about the future forever. And right now mine is 1-2 more in-patient cycles of VTD-PACE followed most like by a stem cell transplant and then … I dunno. Neither do my doctors.
As a result I’ve become what I call a pocket hedonist. I take pleasure when I can and where I can, no longer caring (within reason) who thinks what about it. Yesterday, for example, I ordered a pizza from Fat Sully’s and got a 20″ for the nurses in the infusion center as well. I enjoy doing things like that. I write here, although on days like today I wonder who I really could be helping by putting this bile to paper besides myself.
I think this is the death of hope. It feels like that. The odd thing is in its absence I simply feel like an automaton going through the motions instead of someone crushed with despair. I’m tired of hope. It’s exhausting, the cycle of hope – disappointment – hope, and I’m tired the minute I wake up every day these days. I’d rather just be me, although I wonder if I’ve permanently lost who that is in all of this.
Instead, I simply DO. I no longer feel the need to ascribe my actions to something that keeps letting me down. I take stock every day of what I’m capable of and I just focus on continuous motion.
Is that wrong? Am I doing cancer wrong? Inquiring minds want to know!
In the meantime, I’ll just be moseying along and trying not to think.