Cancer Didn't Make Me a Hero: It Made Me Tired

I am done with chemo. That's right, I finished my 16th and final infusion yesterday.

On hearing about my completion, I was given major props by everyone. As if I had just graduated with honors from Princeton. There was a lot of congratulating going on and thumbs up and even a pair of fresh-cut roses gifted to commemorate such a victorious feat. 

It felt good. People are so kind.

But it also felt strange because, c'mon, it's not like I contributed anything worthwhile to the human race by surviving weekly doses of poison being pumped through my veins. Mostly, I sat in a Lazy Boy for 2-3 hours every Wednesday trying my darndest to complete just one Sodoku puzzle. These were one-star level puzzles, and they were IMPOSSIBLE.


Some people spend their Wednesdays discovering new gene-altering drugs to eradicate disease. Others devote their mornings to composing euphoric sing-along musicals with transformative dance numbers. And I can't even complete a level one-star Soduko. I do not deserve so much as a high five, let alone two white roses.

I just get though things, really. I'm no pioneer here.

People, though, are so kind that they bestow, with alarming regularity, magnanimous epithets on me and Paul that I'm not certain we've quite earned.

They say things like "you're the strongest person I know" or  "you're such a fighter" or "damn girl, you are such a ninja warrior princess!" No one has ever said that last one, but I would be so beyond flattered that my head would probably burst into into a thousand pink butterflies and I would legally change my name to: "Liz Warrior Princess". (Hey - morning after chemo here. Anything goes.)

The truth, if you care to know, is that I don't feel particularly brave or strong or brilliant (again, level 1-star puzzle people). I am just doing what I have to do to survive and carry on. Sometimes, I'm good at it (i.e. I don't cry in the shower, and I go for a walk after treatment). Sometimes I'm appalling at it (I'm driven home in self-imposed silence and then devour potato chips while binge-watching Sherlock. Later, I may or may not launch into an irrational fit of rage over a bowl of cereal milk left out in the TV room.)

I understand why people say such undeserving things on my behalf. I really do. Some of them may even genuinely believe chemotherapy has morphed my husband and me into a pair of benevolent crime-fighting superheros.

Or, more likely, they are just being nice. One thing they do have right, to an extent, is that having cancer has changed both of us. In some ways, yes, for the better. We're more empathetic, we've been forced to practice selflessness with each other, we've had to learn to surrender to God's will (always an on-going lesson).

On the other hand, having cancer has also brought out some ugly parts of ourselves, mostly when we are at home together. The gracious people calling us Warrior Ninjas do not see that, of course. The truth is there are looming moments (days, weeks, months) of despair and hopelessness. Times of doubt, lack of Faith, crankiness over blanket-hogging.

We fight. We grumble. We worry. We are just humans being humans. Weak. Tired. But doing our best. Usually.

Thank you for choosing to see our better side, though. Or for pretending to, if that's what you're doing. Just thank you for the kind words. They are good to hear. And it is good to have chemo behind me.

Paul's Treatment: 2016 - Now

One more post should just about bring Paul's treatment up-to-date. Frankly, I'm itching to get on with things. So I'll be editing ruthlessly here.

The thing about Meso is - it's incurable. We all hate that word. It signifies defeat. It suggests someone is going to die by the end of the story. It's something that, if I'm going to be perfectly honest here, took me some time to wrap my head around.
 I definitely didn't process that fact when Paul was first diagnosed. We'll be kind and call it innocence instead of ignorance, but at 25 I still thought everything was fixable. We have science, people! Haven't we made enough advances in medicine to make my otherwise healthy husband tumor-free?

But. We haven't.

By the fall of 2015, his tumors had diminished slightly in size, but they were still there. They will likely always be there. So, unless we wanted to drive ourselves mad with worry, we had to adopt a new approach to Paul's cancer. Instead of looking at his disease as something we can cure, we see it as a type of chronic illness that needs to be treated periodically. His treatments won't have a definitive end in sight like mine do. We do maintenance when it's required, and we manage symptoms as they surface. It's a beastly thing to sort out, but we've navigated things ok so far.

2016 was a top-notch year for our family. First-class all around, really. Paul was feeling good, his disease was stable, and he was enjoying a break from treatments. He got himself a new job, I quit my old job, and we bought our first home. We had a terrific summer.

 

What? We like ice cream. 

I know the comparison has already been made, and I know how lame and cliched it sounds, but having Meso is very much like being on a never-ending roller coaster ride. Except that roller coasters are fun and awesome and Meso is...not. Anyway, we were up in the clouds for a while there, but by the fall of 2016 things started going downhill. Fast. Symptoms reappeared: weight loss, fatigue, night sweats. By October, we decided it was time to gear up for another treatment.

In November, Paul enrolled in a second clinical trial at the National Institute of Health in Bethesda, Maryland. We were hopeful, especially since he had responded so well to his last trial drug. But guys. This new chemo kicked his skinny butt. Actually, it very nearly killed him, so he wasn't even able to complete 2 full cycles (seriously.)

In February 2017, he tried an Immunotherapy called Keytruda here in Buffalo. Again, he had to stop after 2 rounds due to complications with his kidneys and liver (you know, nothing important.)

Which brings us up to speed! (phew - you still with me?)

Paul hasn't received any treatment since his last Keytruda infusion in April. (Unless you count his prescription drugs...which wouldn't be too far off the mark because, baby, that list runs for miles.)

He isn't able to work, and he does have a slew of symptoms that we're dealing with. But I think (and I'd suspect he'd agree), right now Paul is able to enjoy a mostly comfortable life with the people he loves. He can't go on long walks anymore without getting winded, his intestinal tract will never be the same (goodbye fried wonders of the world), and his brain function, well. That's up for discussion. (love you, Paul!)

There are things he can't do, and it's frustrating. Of course it is! But, given the circumstances, we're lucky there are still plenty of things he can do. Over the last 5 years, we've revised (with several rewrites) our version of what constitutes a normal, happy family. And anyway, forget "normal." It's a pointless adjective when it comes to family life. Just happy. That's what we aim for.

Post- HIPEC Treatment: 2012 - 2015

Life after Paul's HIPEC surgery was good. Real good. He was considered 'NED' (no evidence of disease) and required no further treatment beyond quarterly CT scans to make sure things stayed that way.
I'm likely romanticizing those first two years of marriage (there I go again), but most of my memories look like this:

Super Fantastic Explosion of FUN!!!

We camped and took roadtrips in my old Volvo wagon and met interesting hippie folks at festivals and visited vineyards and had lots of bar-b-ques and hiked and watched Dexter. We also made this exquisite creature:

Ingrid Philomena Coleman - born July 29, 2014

In August, with a proud, springy gait that is the hallmark of new fathers, Paul went in for his routine scan. That's what his CT scans had become to us: entirely ordinary, unremarkable check-ups. Just part of our routine. At that time I was, for some reason, extremely...I don't know. Naive? Yes. Silly and naive about what we were dealing with here.

Mesothelioma is a bear.

It's viciously aggressive and, in our case, brutally cruel with its timing.

"Liz. Something came up on the scan. They think it's back."

I was gutted. I hadn't even fully healed from the messy ordeal that is childbirth yet, and my husband was on the phone telling me he has cancer. Again.

A week or two later they did a biopsy, which confirmed their suspicions: it's the blasted Meso. Oh, Paul. Sweet, handsome, hilarious Paul. Just stop. Stop having this bloody cancer. Stop so we can be young and new and happy forever.

Sept-Nov 2014: Paul receives two (dreadful, awful, mean) chemotherapies - Alitma and Cisplatin. They don't work.

New Year's Eve, 2014: Dr. Kane attempts another debulking surgery. It doesn't work.

Ok, Meso. We get it: you're bigger than us and a bit of a bully. Can you just be cool for like one minute, dude, and give us a win? Just something small, to make us feel better about the world and stuff.

January 2015: Meso tells us to piss off, but our family and friends and total strangers won't take that for an answer. So they turn themselves into a massive safety net and make sure we are fed and loved and taken care of. They even throw us a huge benefit, raising funds to help us with the mounting debt that happens when you have stupid cancer. People are incredible. I can't even tell you.

February 2015: We look into clinical trials and start traveling to meet with Mesothelioma specialists. First stop: Chicago. Where we have deep dish pizza. And meet with Dr. Kindler. But pizza!

So: oversimplifying here, obviously. Even with our warm and fuzzy safety net and the life-altering experience of tasting Chicago deep dish for the first time, those were some rough months. Looking back, I can see very clearly that I had a severe case of post-partum depression that my stupidhead self ignored. Don't be like me. If you can't get through a day without ugly-crying 16 times, um, get help.

March 2015: We attend a Mesothelioma Symposium in Bethesda, Maryland. Major turning point. Major. We connect with Dr. Hassan's team at the National Institute of Heath. We meet, for the first time, other people fighting like Paul. Meso becomes less scary. Still a bully, yeah. But we discover this jerk does have weaknesses, and we are getting back in the ring. And this time, I am going to be the hot cheerleader wife my partner needs. Hey Meso! That's right, I'm talking to you! GO STICK IT.

April - May 2015: Paul enrolls in the SS1P clinical trial at the NIH. He makes it through two cycles, but is booted in June when his body develops an antibody to the drug. We're bummed, but just gotta keep on keepin' on.

September 2015: Paul receives the first bit of good news he's had in the last year: his tumors ARE SHRINKING!!!!! Wahoooo! Finally, his tumors had responded to something. We were overjoyed. 

Kayaking for Meso: 2015 - Raising funds for the Mesothelioma Foundation