No Dress Rehearsal, This Is Our Life

Some awesome things that have been happening:

• I can wear mascara, finally. (I have a full set of eyelashes!) It�s always been my favorite, and I went 6 months without, so no -- I will not downplay my excitement.
• In case you didn�t hear, my second mastectomy was a success. Probably should�ve opened with this one, but gawrsh I love mascara.
• I am far enough along in my healing to wear a specially-fitted breast prosthetic. Which I realize is one of those things you might wish to leave out on a blog that�s read by your parents and maybe your high school teachers. It�s sort of like talking about a shopping spree at Victoria�s Secret: a cool thing, but a keep-to-yourself thing. But it�s also sort of exactly NOT like that. I have cancer. (cancer card! It�s happening!) I do (and write) what I want. Anyway, it�s great fun because when I go out, I no longer need to decide between the very unbecoming one-boob look or futilely stuffing a wadded washcloth into my bra. It�s a massive relief to wear clothes that fit, instead of the billowing, muumuu-like tunics I�ve been favoring. 

• It�s not a huge deal, but I am stupidly proud of an article I wrote that was published on the website, Introvert, Dear. Possibly, I talk about introversion too much. Doesn�t matter. It�s a quick read about coping with cancer as someone who requires (excessive?) amounts of alone time: �I�m the type of person who will go to great lengths to remain invisible in public. But there�s something about being eyebrow-less that turns heads. There�s something about a bald 30-something mom inspecting bananas at the grocery store that drives fellow shoppers to strike up a conversation. People want to express empathy, and that�s terrific. It�s also my worst nightmare.�
• A hugely awesome thing that I�ve been meaning to bring up for a while -- these last several months, our "Coleman Army" has courageously pulled through, picked us up, dusted off our pants, and engulfed us with love and pot pies. When people say �I don�t know how you�re doing it,� all I can think is, �I�m not the one doing it! I�m being carried through these stormy seas by a badass ARMY of the best folks on Earth. They�re doing all the doing.�

So, thank you. I feel pitiful saying that because it just seems...insufficient. Up against the multitude of ways people have helped us this year, my �thank yous� don�t really cut it. Like OK, here�s about half of the cards we�ve received since my diagnosis. Half.

When life can be a real pisser, I�ve found that people can be quite the opposite.

I�ve learned that a plot-line featuring two young people with cancer, mounting medical debt, and a steady diet of spaghetti and Ragu -- this drives most people to rise up and shout, �not on my watch!�

People (dear friends, barely acquaintances, lovely classmates I haven�t spoken to in a decade, complete strangers) have jumped in and made this whole mess a lot less messy.

People have made us meals. So many delicious, nourishing, creative meals. Thank you!

People have sent us gift cards and packages with all sorts of goodies. Danke.

People have taken Ingrid to the Zoo or the park or wherever, just so Paul and I could rest. Much obliged.

This past spring, a young family helped clean up our overgrown yard. A million times, thank you.

One kindhearted and terrific individual set up a fundraiser to help us out. To everyone who has so generously contributed: you are rockstars and we thank you! We are so beyond grateful for the financial help. Now I can placate some of those persistent debt collectors ringing me six times a day (cheap, cancer ain�t). Hurrah!

I am profoundly touched by all this kindness. Profoundly. I know Paul is, too. Also, I�m so grateful for all of the positive and encouraging feedback I�ve received about this silly ol� blog. I am hyper-critical of everything I write, so when I hear a �good job, sport!� it makes my heart glow. Then I get right back to tearing my work apart. But my heart does glow, if ever so briefly.

It�s corny, definitely, but it must be said: writing about this cancer drama-rama has been beautifully healing for me. When Paul was sick the first 2 times around (back in 2012 and again in 2014), I was my usual quiet self about things. I didn�t post updates on social media. Because who wants to hear about my little dark night of the soul when the world is already filled with an almost inconceivable amount of heartache?

So I kept these gross feelings to myself (and a couple of close souls). In the midst of full-blown depression, I stopped writing entirely. I let myself get swept up in the current of life�s foulest emotions (anger, grief, envy, complete and utter despair). 

In the thick of things, I couldn�t see the point of sharing our experience. I wasn�t exactly doing a bang-up job of living our experience; what merit could there be in dragging other people down in the mud with me?

Once I made the decision to write and to share what I was writing, I saw, almost instantly, the benefit. I can�t tell you how uplifting it has been to witness all of these people rallying around us, all of the thoughtful emails, the Facebook messages from total strangers, the encouragement, the prayers, the Moana-themed toys for Ingrid.

It has been one strange and hard and occasionally gut-wrenching year for our family. But I am happy I decided to share some of our story. The internet can do wondrous things (awful, terrible things, too. But for our purposes - wondrous things!)

Some less than awesome things that have been happening:

Paul has been very up and down with his symptoms. These days, more down than up. 

He has terrible stomach pains that leave him doubled over in bed. 

He's anemic. 
He throws up too much. 
He's losing weight. 
He has balance issues, so he now uses a cane when we go out. We are officially 90 years old. Obviously, it's a snazzy green plaid cane. Because Paul is one dapper 90-year old. 

All of this is troubling. Quite. But you wouldn't know it by talking to Paul. He makes cancer look easy. He's still as handsome as ever, and his skin tone is surprisingly healthy-looking, plummeting hemoglobin and all. 

Some items I can�t categorize into awesome/less than awesome things that have been happening:

Yesterday, Paul flew back to DC for a consultation at the NIH. They have a drug that has shown to be effective fighting peritoneal mesothelioma, and they want Paul to give it a shot. This could qualify as an awesome thing, but it�s too early for me to get excited about it. There�s a lot to consider before moving forward. Paul�s faulty kidneys, for one. 

It�s a painful topic, but one that comes up more and more: how in the heck do you decide when to stop chasing risky treatments and just focus on symptom management? At what point do you opt for a shorter, more comfortable life over an excruciating, albeit extended, one? 

I don�t know. Our default mode is to claw at every last scrap of life, chasing after it with the ferocity of ravenous beasts. But what happens when all this grasping for existence leaves you with a half-asleep life of suffering and complications? 

I want to live. I know Paul wants to live. Like I said -- it�s a painful topic. But it�s the one that�s shading our current landscape. It�s coloring the way we live, the way we envision our future, the way we smother Ingrid with desperate kisses.

If you're from the Western New York area then you probably already know, but Gord Downie (lead singer from The Tragically Hip) died from an f***ing brain tumor last week. Death is sad whenever and however it happens, but right now cancer-related deaths strike a nerve with us. 

I'm signing off, then, with some words from The Hip that seem fitting. Gord, you said it better than anyone else could, you shining poet:

A Summer Blogging Challenge: Coleman Edition

I�m a little late to the party, but a fellow breast cancer blogger, Nancy Stordahl, whom I admire greatly, proposed a summer blogging challenge last month. Though the grocery stores here in Western New York are stocked with Oktoberfest, and our temps are hovering right above sweater weather, the calendar agrees with me: it's still technically summer. I got Paul�s answers for these, too. And they�re good.

1. Share anything you want about your cancer diagnosis (or your loved one�s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you�re comfortable sharing.

Liz: I was diagnosed with Invasive Ductal Carcinoma, stage IIIb, in February 2017. The cancer was in my right breast and had spread to my underarm lymph nodes. I was 30. No family history, really. Just one cousin on my dad�s side who was also diagnosed fairly recently. Because a lot of people ask: I found a lump so I went to the Doctor.

Paul: I was diagnosed with Peritoneal Mesothelioma in 2012 at the age of 27. No family history. I guess I felt overwhelmed when I heard the news. I didn�t even really know what Mesothelioma was at the time. I definitely didn�t know how serious and deadly the disease was. I thought I could be cured.

2. What is the most outrageous thing someone has said to you about your (or your loved one�s) cancer?

Liz: Oh, there�s quite a few of these. A well-meaning nurse told me during pre-op, �At least you�re getting a new set of breasts. It�s like an upgrade!� It�s not. She wanted to make me feel better, but it was still the very opposite of what you should say.

Paul: I was having a near-death reaction during a clinical trial at the NIH, and someone Facebook messaged Liz to say �they were praying for us, but Paul shouldn�t be getting chemo or other harmful cancer treatments and that�s why his body is reacting this way. Hugs!�

Liz: Really. Great time to push your self-righteous, delusional alternative medicine agenda on us. ugh.

Paul: Also, people telling me �all I need to do is change my diet.�

3. What is your biggest cancer pet peeve? I know it�s hard to choose, as there are many to pick from, right? But what irks you the most?

Liz: People touting basic self-care habits as cancer prevention. Like if I eat this dish of brussel sprouts instead of this dish of Panda Paws, my cancer will shrink. It won�t. It will just make me sad.

Paul: Anything that starts with �I read an article��

4. What is something you want others to know specifically about breast cancer?

Liz: I�ll admit, I was in this camp before diagnosis, but people - breast cancer is total crap. It isn�t the easy-breezy cutesy disease it�s portrayed as. It KILLS people. It�s made our life very hard.

Paul: This is about Meso, not breast cancer. But I�d like people to know that not everyone gets a monetary settlement. When people hear "Mesothelioma," they usually associate it with all the lawyer ads. We never received any money out of this.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Liz: At first, I didn�t worry about it. Not at all, actually. I was fully confident that if I just pushed through treatment this year, I could get on with my life. Now that we know my chemotherapy did NOT do what it was supposed to and my mastectomy did NOT do what it was supposed to, I worry. I keep myself distracted and busy enough that I don�t fritter my days away with worry. But it�s there. I�m terrified of it metastasizing.

Paul: My biggest worry is that I won�t be around when Ingrid is growing up.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

Liz: Eh, no. Why is cancer the one disease that people expect to be morally edifying? Like I have this terrible disease, my husband has this terrible disease, and it sucks. If anything, cancer makes us grumpy and tired and sad. But then I guess it does make us more empathetic?

Paul: No, cancer did not make me a better person.

7. What is your favorite cancer book? (No, I�m not fishing for mentions of mine!)

Liz: Oh, I haven�t read any yet. But Paul Kalanithi�s When Breath Becomes Air comes highly recommended by a bookish friend whom I trust. Also, I LOOOOVE Nora McInerny. She wrote about her husband�s battle with brain cancer on her blog, My Husband�s Tumor, and I really need to read her recent memoir It�s Okay to Laugh: (Crying is Cool Too). She is hilarious and honest and wonderful.

Paul: Oh, I don�t read that stuff.

8. Besides your family, where do you turn for emotional support?

Liz: My cat. Seriously, haha! I�ve received loads of pamphlets with different young adult support groups that people tell me �I just have to join because it will help you so much!� But I just don�t go for that stuff. I pray. Prayer is a huge support. Without Faith I would find this much harder.

Paul: My Faith.

9. How many cancer blogs do you read and why do you read them?

Liz: I don�t read any regularly. Mainly, because I am sort of new to this whole thing. I do like Nancy�s Point, though. She is honest. I appreciate sincerity and truth when it comes to cancer. No fluffy optimism for me.

Paul: I just read Liz�s.

Liz: Aw, thanks Paul. <3

10. Do you call yourself an advocate? If so, what drives you?

Liz: I don�t. My life is too full right now to focus on anything other than �getting though.� Being an advocate for anything sounds very important, though.

Paul: Ain�t nobody got time for that.

So, sunglasses. Over or under the headscarf???

Why am I Spilling My Guts on the Internet?

There's a thing that happens when you get diagnosed with cancer. Or maybe I'm a total nutter and it's just me. Not sure, but it seems the further along I get in my treatment, the less actual hoots I give about what people think.

 Wow. 

That sounded horribly smug and self-righteous coming out...what I mean to say is - I've developed a (slightly) thicker skin about certain things. 

Like this blog, for instance. Under normal circumstances, I would NEVER have started a blog. Mostly because I'd fret incessantly over the possibility of coming across as snobbish. Or self-absorbed. Or insecure. I'd worry that my posts would trigger collective eye-rolls and Facebook friends unfollowing me en masse. 

I do care about people, they're lovely. I just don't have the energy to waste on worrying what they think about my false eyebrows. Or, more to the point, what they think about my ideas, my writing, or this silly blogging shtick. 

Which, hooray for me because I always used to worry about other peoples' opinions when it came to my writing. How can you not? When you write a blog, you're naturally writing with an audience in mind. It's not just "Hey Journal I did this today" anymore. There are others involved. 

But so what. I have cancer. (Fair warning - I will be pulling out the "cancer card" here as frequently and unabashedly as suits my fancy. Again: the not caring thing)

The biggest reason I initially dismissed blogging about our cancer, though, was my distress over the fact that it would look like some thinly veiled pity party. The absolute last thing I want people to think (hm, maybe I still care a little bit) is that I am in constant need of sympathy or that I spend my days in tearful victim-mode. Please, don't get the idea that I think for one second our family's situation (while difficult, sure) is really any more painful or challenging than anyone else's. 

Because we are NOT special, not in the life-is-hard category. Not one bit. Everyday I hear stories or read things about atrocities and tragedies my mind can barely work out. So no - we are not unique in our suffering. 

To be human is to suffer. Unless you're Kate Middleton and you get to marry a prince and stroll around London looking like a (classy) Barbie all day. But JK because she has two toddlers, so actually her life is more probably a holy terror, and my sentence about human suffering still stands. 

When I first considered writing out our story, I had to come up with concrete reasons to do so. As it stands, this is what I have:

1. On a practical level, I'm blogging to keep friends and family in-the-loop. I thought about weekly email updates, but that seemed way too '90's. (still, what a grand decade that was!)

2. A more selfish reason: I wanted to document our lives for our own personal "time capsule," so to speak. Something tangible that would remind us of that crazy year where mommy and daddy both lost their hair.

3. Lastly, I am telling our story with the hope that it might help a brother out. I can't say who is going to bother with this word-vomit, but if I'm able to reach even one person who is struggling with a similar situation, then that's the ticket!

Typically, I don't go for books with the label "self-help" printed near the ISBN code. But someone very smart gave me a copy of a memoir called On Fire by John O'Leary, a man who was burned as a child over 100% of his body and lived to tell the tale. His story is incredible. 

Anyway, he talks about the importance of embracing your own story and sharing it with the world. He says revealing our unique trials is not done to"seek sympathy, but to free you from longing for it...It's not [told] to perpetually remind others about your brutal childhood, lousy marriage, crummy health, shabby job, or rotten life. It's certainly not [used] as a crutch as to why you remain stuck in the rut today. Nope, we [tell] it proudly to learn the lessons within it, celebrate the scars resulting from it, and do even greater things because of it."

I'm an extremely private person. When conversing with acquaintances, I have a knack for steering the conversation away from myself. I'm weird, ok. I'm not comfortable talking about ME. But when big, hard, terrible things come tearing into your world, your walls start crumbling. 

Cancer, in particular, breaks down your sense of control. You literally LOSE CONTROL because there are things you can't do anymore. There are elements that can make you feel in control to some extent (watching your diet, researching your disease etc.) But cancer is gonna do what cancer is gonna do.

He's a sleezebag like that. 

Cancer breaks down our carefully constructed worlds. And my private-self still doesn't like talking about it. But this:

"In our own woundedness, we can become sources of life for others." - Henri J.M. Nouwen

I don't know if that applies to me. I just don't know. 

I'm definitely not jumping up and down shouting, "Look at me! Look at all these hard things I'm going through! My story is so sad and you should read about it and be INSPIRED! I'm awesome, BTW."

But I like to write. I like to write, and I want to remember this part of my life. So I'll tell my story. And if part of it brightens your day, well, then cool. At the end of the day, I do sort of want people to think I'm an alright person, and that I'm not a total blighter for starting another "cancer blog."

Buuuuut. If that's what you think, I'm also OK with it.

What's The Story Morning Glory?

So I have this thing with amateur bloggers. Well, it's funny. I, um, hate them. Wait - no, no, bad Liz: we don't use the word "hate" in this household. (unless it's directed at food bloggers, and even then it's pushing things)


Get it together.

OK OK. I don't HATE them. Not even the food bloggers. (but ugh, they are just the worst) I just sort of a little bit think they're generally, sometimes, a touch, oh ah - pretentious AF? There! I said it! I said it, and you were thinking it, so now we're even, and we can all breathe and move on!

Down to business: the business, that is, of me introducing myself as (gag) yet another novice blogger schlepping her small words into the ether.

I hate it as much as you do.

It's just - you know. I kind of have this story I want to share. I've had this inner turmoil going on for months where one moment I'm like: "I need to write a book! A 12-part series! How do you self-publish on Amazon? Can I learn it on YouTube?" And the next moment I'm like: "Oh dear God, someone put me out of my misery and burn my laptop and permanently erase all memory of Wordpress from my brain!"

At the very least, I can promise you I will never, EVER make you scroll though reams of boring, mediocre musings on springtime just to get to a recipe with quinoa in it. I won't even mention quinoa in this blog.

I can't guarantee I'll hold back entirely on inspirational quotes or pictures of my kid....but I'll rein it in. And they'll only be the best of the best. No onslaught of lame cat photos, so rest easy there.

Things this blog will most probably involve:

1. tidbits about a toddler covered  from the neck-up in a 1-inch layer of Vaseline.
2. details of life as a husband-wife team battling cancer together. (we so romantic)

I mean if you're here, then you probably already know that's the gist of things in the Coleman household: Toddlers covered in Vaseline. Back-to-back chemo sessions.

Also, I'll throw in any gifs of Adam Scott I can get my hands on. You're welcome.