How Things Are Going…

.

Getting my chest port put back in was like admitting defeat – like I’d completely lost control of the situation.  Okay – so now it’s gonna kill me again and I gotta do something terrifying, frustrating, humiliating, and more than anything – humbling and violating to stop it.   God damned this f***ing disease and everything that its done to bring me to my knees begging for mercy.  It truly has been my nemesis – eating away at me relentlessly for years on end, slowly dissolving any and all of the cherished abilities I once had as a physical being.

Just like the last time this is about to be the best and worst year of my life – all at once.  Back when I was first diagnosed with this rare and deadly cancer it was 4 months after I’d just gotten married to the most understanding, beautiful, and unbelievably tough little woman in the entire world.  She reinforced over and again as she single-handedly drug me through treatment all alone in NY city that year that as long as I was doing okay then she was okay.  Imagine being stuck with someone really sick for a year in a little apartment all alone and thousands of miles from all of your friends and family.  The only lifeline she often had was the telephone.  And yet she really only got upset and cried twice that entire time, and it was only because I was getting my ass kicked so badly by the treatment.  So I did whatever I could during those times to climb back out of the meteoric crater that I’d been cast into in order to struggle back to being “okay.”  I couldn’t stand hurting and seeing her like that.  To me it was the worst thing a person could do to another that they dearly loved right after promising dreams of fulfillment, and a life of companionship and adventure together.

Now I have a baby.  The baby was born on the same day that the doctors told me that the cancer was back – in the same exact location in my back – and that we’d need to do several extremely dangerous emergency surgeries to remove that cursed vertebra and everything around it.  She actually arrived three weeks early.  She was due on October 5th and was born on September 15th – just in time, incidentally, for me to be there for the birth.  Any later and I would have either been in surgery or recovery and therefore unable to do the 36-hour stint of spousal support that it took to bring that beautiful little package into the world.  Seeing my baby born was just the coolest thing… just so damned amazing – especially considering that I was never supposed to be able to conceive of such after what cancer treatment did to sterilized me the first time.  And I would have so terribly regretted not being there.  She and mommy evidently understood this and coordinated a miraculous effort to insure that I would be, and that I even had a sort of protection against the bad news that day.  You know that feeling of relief and euphoria you get when a baby’s born – that high you get after being up for about 2 straight days and finally know that momma and baby are gonna be alright – that’s what I had the day I walked over from her hospital room into to the appointment room where I got the bad news.  I heard what they were saying – knew it was terrible – and yet it didn’t bother me.  A night’s sleep later and everything came crashing down – but that one day was pure peace and calm – from 7:15 am in the morning when she was born, all the way through the time I collapsed on the pillow that night.

What the baby did to help protect me that day can only equate to true love and intent, and it’s something I’ll always cherish and remember. Not surprisingly they say that dads often take a while to warm up to their new babies, and it’s usually as a result of being kind of disconnected from the process.  They’re not carrying and therefore not nearly as in touch as much as the moms.  All said, however – I knew what kind of gift I was getting the day she was born early. It was awe-inspiring.  And I was so grateful to both baby and mom for making such a caring and Herculean effort to do what it took to make it happen.

.

Best and worst years… No one can really comprehend the guilt I feel for putting my wife and now baby through this a second time.  There is a deep sadness that envelopes everything – something that’s been really hard for me to get over.  My wife’s aunt and mother were with us for about 3-weeks.  Before that it was my own mom and dad – taking care of just about everything as I recovered from all of the surgeries and prepared once again for chemo.  This – all while Cris was getting back on her feet after the delivery in order to go back to work right away since we’re gonna need the money for daycare assistance and the thousands in extra co-pays and uninsured prescriptions.  Every time I think about her mom and aunt leaving I get choked up and can’t breathe. It’s not just that I miss them.  It’s that I can’t stand the idea of putting my wife through this again – thousands of miles from family with an invalid for a husband and now a baby to care for as well.  Luckily we didn’t have to move away from home this time.  Our circle of friends are within easy reach and one of her sisters is even living with us long term.  It doesn’t change the guilt I feel however.  It’s as if I’m letting them down again just when they need me the most.

.

Chemo Regiment – Day 3 of 120:  I’m scheduled to be in treatment for a year and am already feeling sick to my stomach after just two cycles.  My breath and skin smell like chemical waste, and every time I go to the bathroom the unnatural odor almost makes me want to vomit.  I’ve got another 118 of these to go… to check in, wait, get weighed, record temp and blood pressure, wait, and then get poked painfully in the chest with a needle to get everything started.  From the time we leave the house to when we finally get back home takes about 3 to 4-hours – a colossal waste of time, energy and money – every day of the week for two weeks, then off for a week, then back on again for another two weeks, on and on into eternity.  At a time when a person’s quality of life should be at its best, it’s at its worst – squandered and wasted in waiting rooms and care centers.  The last time I went through this it was with innocent little babies in the pediatric ward in NY City.  You see a baby go through something like this and all you can think of is – “If that baby can do it then so can I.” This time I’m with a bunch of older folk here in Portland.  It’s been almost six years since the last time and I’m tired.  In all that time, and after all that I’ve tried, I never regained even a modicum of my full athletic ability and am therefore starting now from a far weaker standpoint.  The old folk aren’t helping to raise my fighting spirit – not like the babies did.  Maybe it’s the shear audacity of seeing a child with cancer or because of their innocence or of how babies symbolize “possibility” where older folk somehow do not.  I don’t know, but whatever the case, the older folk aren’t even remotely as motivating as those babies were.

I sit here now waiting for my third treatment to begin and wonder once again why so much pain and suffering has been reserved for a single person and his family. I think about that all the time now.  Why – when there are so many evil, and therefore far more deserving people in the world, does another good one end up with a disease like this?  It’s a frustrating question that I’ll never receive an answer for.  And yet in all of this – all of this tragedy – there is some consolation.  By some stroke of luck or inevitability I’ve experienced more real and substantive miracles than most people will ever have in a lifetime.  I’m not particularly religious or important, or even wise for that matter, and yet here I am – still alive – clearly miracle number one – and with a beautiful, healthy baby girl – easily miracle number two.  Much of this is thanks to the unwavering efforts of yet a third miracle – my loving and beautiful wife.  And there were plenty of others along the way, like for instance the baby’s birth date and how it coincided with my latest diagnosis… one happenstance after another that often defied description, reason, or logic and that I’m far too tired to talk about here in any significant detail.  All those miracles… all for one person and his family… the only substance besides family and good friends that have kept me going.

.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: