Happy Birthday To My Bad Mama Jama.

Today marks exactly one year since my mama‘s stage-4 pancreatic cancer diagnosis.

It also would have been her birthday.

Today is bitter-sweet at its very core.

It also calls for joy.

A photo posted by stephrosedoan (@stephrosedoan) on Feb 12, 2015 at 2:47pm PST

Happy Birthday, Mama Goose! I’m so v. thankful we were able to talk you into the silliness of celebrating your “Halfy Birthday!” Not only was it the day you turned a 1/2 year older but it also marked 6-months of fighting cancer like a bad Mama Jama. I am so proud of you! Thank you for being my world, my moon, my guiding star and my entire galaxy for 24 years.

You Wouldn’t Like Me When I’m Angry.

A woman who no one in my family had met before died and I sobbed about it. She lost her battle with pancreatic cancer at about 11am last Sunday, according to a post on Facebook.

My dad, too, cried over the woman who we’d never met in person and didn’t really know– the woman in the picture with her death announcement was a total stranger to us. If we’d have seen a “healthy” Albie on the street, we would’ve walked on by without a second look. It was the same way with my mama. People who met her during her 8-month battle with pancreatic cancer were shocked at seeing the pre-disease pictures we’d chosen for her memorial service. This disease strips every inch of meat from its victim’s body until nothing remains but a half-alive skeleton. And it gets worse, so much worse.

My dad and I had just finished a greasy diner breakfast (note: challah french toast is king) and on our walk back to my apartment dad brought up Albie. Neither of us knew how she was doing and the last we’d heard she was taking a “much needed break” from her treatment beginning late July. We’d only ever communicated with Albie via Facebook since “meeting” her in a pancreatic cancer support group last fall. The newest post on her wall said Albie had passed away that morning, and my dad and I read in disbelief.

I get mad sometimes. I used to get mad all the time back when my mama was still fighting and it felt like our family lived at her cancer center. We were surrounded by sick people all the time. I was mad because while I spent all my time with people who were either dying, on the road to dying, or lucky and beating death to a pulp, other people kept on keepin’ on with living. I was mad because before I knew what cancer really was I’d also kept on keepin’ on with life. I’m doing it again, too. We all keep on keepin’ on by going to work, making dinner, working out at the gym, meeting up with friends, falling in love, getting married, buying table lamps and oval-shaped rugs and those damn decorative pillows, and we live our lives. It’s the way we’re supposed to live in a continuos and unaffected circle of life. And, I hate it.

I hate the saying: “keep on keepin’ on” mostly because it sucks. Not only has it grown cliche and too sorority (I’m a member of the tribe) but who the fuck in need was ever helped by shit staying the same? What progress has come from us keepin’ on keepin’ on with zero change?

I guess, I’m still kind of mad. I’ll tell you why. (Ha, of course, I will.)

One triumphant moment in my history of being the younger sibling was when I explained something to my big brother (aka my superior who I will never be as kewl as, ever) and he said: that’s a good point! Fellow baby sibs will understand this. This is not shit that happens for us v. often. My brother and I were sitting on our mama’s bed–we all took turns guarding her during those last weeks just in case the mighty angels came down and swept her away in chariots of fire or whatnot–it was our turn and we started debating her initial decision to have fought this stupid terminal disease. Coming out the gate 8-months ago, her doctors were clear on this is how it ends: she dies while her children sit on her bed watching. But she wanted to fight and she fought like hell. The side effects of chemo sucked the life out of her, though, and she suffered through the cycles of side effects like high fevers and intense weakness, plus exhaustion, and even more nausea, and this super weird cold-sensitivity thing forcing her to eat everything at room temperature and wear *gloves all the time.

So why go through with it all– the extra sickness and constant glove-wearing– if she was dying no matter what? Fair question. But, as I told my brother, someone’s gotta be the one to say no. Rosa Parks said no. She got arrested and didn’t get to ride the bus after her “no” but it definitely stirred shit up for the better. Something NOT okay was going on and because she had the courage to say no, despite the consequences, things changed. And it wasn’t an overnight change. IDK (history too well) if she ever got to enjoy the changes she put into motion that day… but, just like my mama, she decided things could not keep on keepin’ on.

Basically, I got my big brother to agree with me that our mom was a lot like Rosa Parks. (He was under a lot of mental and emotional stress back then.)

When it comes right down to it… the reason my mama (and Albie, most likely, also) died is because she starved to death. My mom stopped being able to eat at the end of March, and then her family and close friends had to watch starve to death. For weeks. Day and night. While we planned Easter dinner and then during the entire month of April. We watched her starve for a month and live without water for over 15-days until she died on April 28.

You mad too yet? Nope. Okay, I’ll keep on goin’ on.

My mom’s body stopped digesting solid food and eventually, when even our go-to liquid meal of chicken broth caused her severe pain until being vomited back up, her oncologists suggested (commanded) it was time for hospice care. I’ll remember this forever, of course. It’s imprinted in my soul: the day her oncologist had “reassured” us that her best bet at having more time was by going into hospice care, which my mom surrendered and agreed to, because continuing treatment would kill her. So, her best chance at surviving was to enter into a service that is designed for people who are dying, and they’re dying very soon.

One of the nurses put it best, “Damned if you do. Damned if you don’t.”

When our FB friend, Albie, posted a status saying she was taking a “much needed” break a few weeks ago, my dad and I shared the same thought of that’s not good. After my mama had died, Albie checked-in on us often. My dad and I prayed for her every day and talked about visiting, or meeting, her one day. I replied to her comment on my profile picture once saying how much I wished her the miracle my mama never got. She needed to beat this impossible cancer– for her self and her own family but also for my mama. Go, Fight, Win!

But, the pancreas doesn’t respond to chemotherapy. It’s used as palliative care to stop and/or slow the cancer from spreading. It was big, big news when the FDA approved the drug Abraxane for use along with the already used drug, Gemcitibine, in September 2013. Groundbreaking research was done for the discovery that together these two miracle drugs drastically improved the average survival… by two months. The lifespan of patients went from 6-months to 8-months! Woo! That’s the only advancement we’ve made in 20-years.

And yet no one’s called bullshit.

The Pancreatic Action Network (PANCAN) celebrated like it was 1999 again for two more months! No one had the balls to admit two months isn’t enough and we need to do more. Our patients, loved ones, moms and dads, brothers and sisters, children, trial test subjects, whatever these people are to we who care– need more than an additional two months.

Why should we demand more? Why should we care? As we keep on keepin’ by going to Soul Cycle, shopping at Whole Foods for only organic veggies, buying new shoes, being overall dang good people who donate to charity and don’t litter… why stop our lives and care more?

Because, pancreatic cancer will be the second leading cause of cancer deaths in 2020, according to the American Cancer Society stats. It’s moving from the fourth leading cause to the second in less than four and a half years. Add ten years, and it’s predicted that by the year 2030, the number of new pancreatic cancer cases will have doubled and the deaths will have almost tripled. Last year, 46,420 people were newly diagnosed and 39,590 people died.

This cancer is coming for you, or someone who you love even more than you, and there’s no cure. All you can do is plan what to do with the exciting gift of those extra two months.

*I got Mama a little present to cheer her up during the weird cold-sensitivity-thing, and also make her feel a little more useful around the house. It was good for her to feel like she still had purpose. I bought her fuzzy gloves that were made for dusting! She, however, did not wear them so it was a loss. Great idea, though, glove company!

Why This Babe Writes.

I write this not because I think I’m totally right, at all– I write it because I read, for hours, in the middle of the night when I couldn’t sleep, while I watched the world around me catching fire—burning and smoking and leaving nothing but a crisp, dark memory of what my life was like before grief— I read what was written in most likely the same state I write what I write. And I hope people read. Not because I’m super vain and begging to be heard, but because I don’t know any other way out of that fire in the middle of the night without getting burned. It was the power of knowing I wasn’t alone, while in a house full of people who came to ‘be there’ for us, and that there were other people who’d lost mom or dad, brothers and sisters, and worse than I can ever imagine, there were parents who’d lost a child. These were the broken people who I made my friends—we were all shattered, but together. And if, while still in pieces and surrounded by slivers with sharp edges pricking their scars, they could continue to live again, well, then… me too. What I read was sad and hard and made me sob, but it’s the only comfort I felt– just knowing they were still writing.

One thing I recently read, which really nails shit on the head, says grief makes you lose your filter. It’s so true. There are so, so many things I don’t care about anymore— and most of them have to do with what other people think of me. It’s scary and wrong, how little thought I give to what other people are thinking while reading my writing or scrolling through my posts on social media. But it’s the truth: I don’t care. I don’t care because I’d rather have one person, or one follower, who reads my blog or an Instagram caption, or a lonely late night Tweet, and feels a little comfort from it… over getting thousands of views from people reading pure bullshit and liking everything I do in life. This really isn’t realistic for anyone, of course, but we hella wish it was. And there are so, so many things grief takes away from caring about… ‘what people think’ is so, so very low on my list of things worth ever caring about again.

For the Love of Slob, Stop Heckling.

When my mom was up against the toughest battle of her life after being diagnosed with stage four pancreatic cancer on her birthday last year, these are the pants she wore:Screen Shot 2015-07-30 at 2.56.12 PM

I’d recognize them in my sleep. There was always at least one pair in every load of laundry, and every mall trip included a stop at Eddie Bauer for another pair. She lived in these sweat pants for the last 6-months of her life. They kept her tiny, shrinking, body warm and the draw string enabled enough flexibility to still fit the next week. So, it was the memory of these sweatpants that sparked my unease with an article I read yesterday.

It was written by one of my favorite writers, John Jannuzzi, who wrote his post after reading a rant post in the NY Post, by Elisabeth Vincentelli (who’s maybe one of his favorite writers?! Thus, completing the circle of life!) This chain may sound confusing. Basically, both writers post pros of dressing for success in order to be taken seriously, (because this is such a new thing!) I respect these two writers immensely, and they make lots of valid points… But… I have a big BUT and I cannot lie: their words read like those belonging to v. fabulous New York City people, who’ve never set foot in a small-town suburb and walked among its native people. Most definitely, the writers have never once braved the glorious lands of the netherworld, aka WalMart. (The prices there amaze me!) It’s not a bad thing.

I’m not here to tell anyone right from wrong, shame the fashion elite, or try a dramatic appeal to their emotions. I’m smart enough not to give myself authority where I haven’t earned it. But. Really, y’all?  Your standards for dress are a galaxy far, far away from what is most important on the list of priorities many people carry with them every day.

My mom, while wearing saggy sweatpants, was facing a 5 percent chance she would be alive beyond a year. And, despite these impossible odds, as well as her oncologist’s too honest prognosis of 6-months, she 100 percent had not “given up” on herself.

In fact, she was overly positive, and I still sob every time I go back and read her last Tweet.

Never give up. You don’t know what’s right around the corner.”

Her Eddie Bauer sweatpants were worn to as many places possible: dark movie theaters, the mall, neighborhood parties, the cancer hospital, visits with family, Christmas dinner, and even church. It was a blessing when a day arrived where she physically could leave the house, sweatpants or *not. (*It was v. much encouraged by my family that she wear pants.)

Plus, do you know how not fun it is shopping for a cute chemo outfit? It’s not fun. My mom and I tried before her first treatment to find a great new “power outfit” that really set the tone (for a miracle) because, as Jannuzzi writes, “Those who look their parts and places project authority, confidence, and an undeniable sense of self-awareness.”

The truth is, though, there are some heartbreaks in life that squash us no matter what we wear or will buy, how much money we have, if we’re attractive or not, or whether we are super successful and always look our part in the world.

I’m sure both writers would argue they, of course, weren’t suggesting sick people need to dress better– but they don’t know that. One quick and dirty glance isn’t enough to know what someone’s got going on beneath sweatpants, pjs and cargo shorts– even, if you’re wearing Google glasses, you still can’t tell. It could be a really, super bad day. It could be a big deal someone got out of bed. It could be the nicest clothing that person owns… Something you can learn by shopping at WalMart: the majority of people in our country are just trying to pay bills, stay healthy (enough), love their kids (enough), make a living, and be happy (again, enough.)

The crowd of unsuspecting people who’re standing outside a theater in the creepy picture used by the NY Post, well, maybe they’re just really happy and thankful to be seeing exciting, live theater in NYC. And, maybe despite, Vincentelli’s disgust, the men running around with their jiggly man boobs flapping in the wind are just plain happy as can be. Maybe these “slobs” are happier than the people who judge them. There are days since my mom’s death where I fight every demon to feel happy. So, if “happy” is setting the bar too low, well, sorry.

After reading the articles I did think, well, maybe I do need to dress nicer because I don’t have cancer. I want to honor my mom’s memory, not look like I’ve given up on life. Before her cancer, my mom dressed extremely well– stylish and age-appropriate — and sweats never, ever, left the house. Her visits to my college attracted tons of gushing sorority sisters, all saying how gorgeous she was and they’ll dress ‘just like her’ later in life, (when they’re old.) But despite my genetics for shopping, I’ll be damned if the way I honor my mom is with how I dress… this woman went a month without food and over 15-days without water before she had finally “given up.” That’s some rad shit.

I understand I do need to be realistic about how the world works because there are different types of people. Some types can be super snobby and judge you harshly. I usually don’t notice it while I’m bopping in my stretchy yoga pants listening to Weezer and daydreaming about WalMart, but it happens. Maybe my opinion on dressing will evolve with maturity, like my music taste, or maybe I’ll forever dress and act like a child, as Vincentelli says. I gotta say, though, after being her caregiver, kissing her when she died, planning her funeral and then burying my mom, I don’t feel very childish in anything I wear.

I’d be careful what you label people, esp. if using Grandpa Jannuzzi’s term, “subhuman.” Think about what defines people. And, if there truly is a need for better dress… then there’s a need for better understanding, too.