Casey has F-ing Cancer

$102,998 of $105,000 goal

Raised by 1,125 people in 22 months
At 40 yrs old to get handed a diagnosis of Pancreatic Cancer is the worst nightmare imaginable. Instantly your life has vanished, and the new puzzle of your existence beginnings. You are launched into a very dark scary isolated world. For us this happened to my husband a young man in his prime.
So on top of the pain and agony of the disease & super aggressive treatment that makes you terribly ill.... You can't work , you realize your insurance and short term disability are laughable, and half your meds and supplements are out of pocket. Cancer is truly the fastest way to emotional and physical bankruptcy. Unfortantaley our story is all to common.
We have be inundated with incredible friends & family that keep asking how they can help and wanting to "help" , as anyone who is sick or a caregiver can attest too, that question is unanswerable.... I need a miracle , I need a million dollars, I need more time.... But what you can do is provide any financial gift. As many know this type of cancer is super aggressive so we need to be just as aggressive on all fronts, we can't wait.
Funds will allow us to pay co-pays, try all forms of treatments that are out of pocket, get to and from out of state hospitals, pay the bills, & keep fighting hard and giving it everything we got. No one wants to ask for help but since many have, that's really what we need. Thank you for all the positive energy we do feel it and I will continue to update.

Xo- Casey, Michelle, Tutu & Betty
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Just a quick thank you to my friends and family with little notice that took off for 10 days with me on a crazy adventure, 1200 miles to spread Casey’s ashes. To the friends who came for part of the trip, we met & made along the way, and also to the many that wanted to meet up and were in contact with me. Unfortunately the pace that we were moving at and the organic nature of this trip made it difficult to have any real downtime but I thank you for keeping in touch & attempting to hook up, it’s touches me profoundly!!

Also for all you following along at home ... obviously Caseys death and the pstd surrounding it, is something I will struggle with every hour & will for the remainder of my life, but I know a lot of people are still very much unsettled and grieving for Casey as well. So as the “gateway” to Casey it’s my responsibility & I hope in some small way by sharing & continuing to say his name & carry on his passions it will help us all in processing our grief.

I had mentioned to a few people I intend to start a nonprofit; The Casey Grabowski Electronic Music Scholarship Fund. (I’m still working on official name/acronym)
Casey wouldn’t want his legacy to be associated with cancer, he would want it to be about the things he loved. He would’ve loved as a kid if electronic music was introduced earlier & valued like sports are. So the scholarship will be based around awarding a high school student yearly, ( submissions & then top submissions perform live) I will certainly be tapping some of you to help with submissions, web-design, nonprofit status‍ I hope you all that are interested do reach out/get involved.

Personally there are still lots of moving parts and big decisions I have to make. Its a very scary, stressful & singular time but with all of your love and support I promise to do my best & to make you proud. I know what Casey wants, and since he isn’t here I have to live it for the both of us. As always honoring his will & wishes. Love -m
Infinity.
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Today’s a strange day. I’m packing for our West Coast trip to scatter Casey’s ashes (well half of his ashes the other half will be saved for the European leg, me & Casey never got to go to Europe, was out of our budget, but I will make sure I get him there)
Normally when we would go on trips I would pack all Casey’s stuff. I was always in charge of the itinerary, holding his passport, he never even knew what time the flights were or even where we were going half the time he would just say “check my outlook schedule and book/schedule whatever you want, I’m excited to go anywhere”
Instead today I’m packing his ashes.
I have no false impressions of this trip. I’m not going come back healed, of sound mind or with profound closure, that’s simply not the reality. Though I do think some new scenery will do us all some good.... I’m a realist. I know when I come back I have to make some very big decisions about my life, my financial situation, and if I choose to move forward & make a life missing Casey, or allow the quicksand of my grief to snuff my soul... it’s certainly putting up one hell of a fight.
But currently I’m just pissed off.
I’m pissed that cancer took my best friend, pissed that cancer took a far too young man. I’m pissed that he had to suffer through two years of torturous treatments, I’m pissed all the money we saved up and all the dreams we had are gone. I’m pissed off Modern medicine (& holistic) failed us, I’m pissed a brilliant man that loved everything about life, adventure & excitement, loud music and light shows, also a quiet corner in a dark bar where we would sit for hours and never in 20 years ran out of anything to say to each other, a man-child, a musician, a computer wize, a character, a comedian, an optimist and sometimes a real pain in the ass. I’m pissed I don’t get to pack his hole-ly socks & his terrible blue comb with missing teeth. I’m pissed I have to carry your ashes in my backpack, instead of you carrying me on your back.

I’ll certainly post more about/from the trip here & also on my IG dedicated to our story @Prematurelypurgatoried.
The story doesn’t end when the life ends.. there’s a whole other chapter that people need to hear, even if it’s uncomfortable & heart wrenching.
As always I thank you all for your ear, your love, your unwavering friendship, it never goes unnoticed.

xo -m
Also if you live in the West Coast and are planning to meet up please send me a message ✌️
Loose itinerary
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Advocating for a sick person was something I unfortunately had no choice in. One day your laying in bed about to start a normal Friday & your husband’s doctor calls and tells you both on speaker “bad news you have a tumor in the head of your pancreas, more than we can count in the liver and your lymph nodes are all lighting up, you have stage four pancreatic cancer” in that moment our life & my role as a human changed in a thunderclap.

I don’t feel that because Casey has passed away my work is done.
The mission was not only to advocate for my person, but to help us all to understand, the tangled web of health insurance, true medical cost, how to stay on Cobra, applying for Medicaid/Medicare
(though always denied),
fundraising, crowdfunding, getting multiple newspaper and online publications telling our story, searching countrywide trial databases, seeking out Drs and connecting with them through any means necessary, researching alternative therapies, facilities outside the US, grant writing, applying for ever single program/assistance I could find & submitting ridiculous amounts of paperwork.

Now in death I have an entire new world of bureaucracy. Joint accounts frozen because deceased bank continues to make mistakes, utility, phone, dmv, court, register of wills, banks, constantly making me out to be suspicious and then having to tell my sorry over & over.
Faxing, scanning, over night mailing, stamping, sealing, notarizing, & crying.
You would think these Institutions would be better equipped ...Casey is not the first young married person to die, certainly wouldn’t be the last.

My mission now is since I’ve tripped my way through ( still am)! all these very complicated & complex scenarios is to hope I can be a resource for anyone, at any point should, this mess be dropped on your head.
Michelle R. Dewey Consultanting ;) Life to Death and inbetween‍.


I also (even though drugs/medications are suppose to be destroyed when the patient dies) I have large amounts of Creon ( a super expensive enzyme) & other NON NARCOTICS, Creon is a medication that is roughly 2400 a month. In addition to supplements & alternative meds. Patients are sick and can not access these medications with absurd costs. Please send me a private dm/message if you’re a PanCan patient struggling to pay for enzymes.
At minimum I want to continue to help others in the Pancreatic Community especially EOPC ( early onset pancreatic cancer) meaning diagnosed before age 50.

This is a growing population, and it’s incredibly deadly... recent medical journals/reporting have said EOPC is almost always diagnosed at stage four, the patients almost always have NONE of the pre-qualifying conditions seen in traditional pancreatic cancer, chemo and treatment options are less successful, and it is even more aggressive & kills faster. Why is this happening in healthy young bodies?
We don’t know:/

So today’s message is the fight/advocacy/education doesn’t stop because a beautiful solider falls.
It would be selfish of me to not at minimum continue to stay active in trying to help others through the land mines that a aggressive cancer diagnosis, treatment, and aftermath presents.
I hope everyone joins me again this year in the Pancreatic Cancer Walk.

That’s all
Now go enjoy your Sunday with a cocktail & a meaningful conversation

Xo-m
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Since today is World Cancer Day I thought I’d share a little bit about signs and diagnosis because cancer is a sneaky bastard.

Most of you know Casey did not exhibit pretty much any of the early signs of pancreatic cancer; generally pancreatic cancer is diagnosed through, sudden jaundice, extreme pain, significant weight loss or bouts of pancreatitis, and a family history of pancreatic cancer, or heavy smoker.
Casey had none of those.

Ultimately Casey had pretty mild acid reflux and what he called an awkward feeling in his abdomen only right before diagnosis. But what he did have that we now realize was cancer was changes in personality.

When Casey was first diagnosed many of the doctors asked if in the year or two prior we noticed anything.... even mood/emotionally etc. and this is where diseases get missed.

Many of us think only a brain cancer or neurological conditions present in this case but many cancers can first present in subtle (or sometimes not so subtle) personality changes.

In the year or so prior to his diagnosis Casey had a few months where it was literally like a monster invaded his body he was not Casey.
We now know that monster was pancreatic cancer starting. He was highly agitated, highly agitated at work, he had very little patience he would fly off the handle about things that never bothered him he was acting out, he was engaging in behaviors he would’ve never in a normal “Casey”

But when it’s happening you think OK this is a 39-year-old man just having a midlife crisis which certainly happens.

He even sought out therapy and a psychiatrist and his primary multiple times....because he knew something wasn’t right. They told him is was just stress & depression ....the typical go away your fine work up...

Also he did start responding to alcohol a little bit strange we would have two drinks with dinner which is nothing for us and right before diagnosis he fell hard and cut his nose/face. His body was already not metabolizing alcohol properly, even a drink or two would make his behaviors much more amplified than he normally would’ve been.

When he got the diagnosis and we connected the dots it all made a lot of sense.
And I’m certainly not trying to dismiss mental conditions, or “bad” behaviors or scare anyone.

Not everyone that has a bad few months has a terminal cancer growing in them!
But I think in our case & in a high achieving / high output / young & fit person like Casey his disease first showed itself in advance in these pretty extreme at times personality changes ( of course the spouse sees it the most).

He of course went back to sweet kind gentle normal Casey, and that other person never resurfaced, as we were told this disease changes and morfs, but the clarity & the “ah that makes a lot of sense” moment was pretty intense.

He even he said a slight feeling of feeling justified he knew something was very wrong. He (we) assumed it was just family mental health issues developing.

Sometimes it upsets me that the professionals he saw didn’t connect any dots, but unfortunately I’m not surprised.

So for World Cancer Day I ask people to think outside of the list & boxes that they associate with specific cancer/ cancer predisposition signs/symptoms.

You know your body best and if something is off no matter if it’s personality, mentally, physically...just keep pushing to get answers
don’t allow yourself to be dismissed ( or boxed into the stress/anxiety/depression pat on the head here’s a lollipop camp)

And if ultimately it is mental that’s ok too, but early detection is key in extending life & prognosis in cancer and that is near & dear to my heart obviously.

Thanks for reading.
M
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Read a Previous Update
Casey Grabowski
20 months ago
8
8

Thanks everyone for your continued support!

+ Read More
Casey Grabowski
8 months ago
5
5

Thank you all once again. My outcome may not be certain, but your love and generosity is, and nothing can change that!!

+ Read More
Jaimie Watts
22 months ago
4
4

I work for the American Cancer Society - I'm happy to help navigate support that you may need!

+ Read More
David Grabowski
14 months ago
3
3

Keep up the good fight, Casey! Sending you all our love from the West Coast, cousin.

+ Read More
Ron Ozer
6 months ago
2
2

A wonderful inspiring article - https://www.delawareonline.com/story/news/health/2018/09/04/husbands-pancreatic-cancer-battle-demands-full-time-caretaker/1124419002/

+ Read More
Helen Marie Graves
22 months ago
2
2

Be sure to contact your local American Cancer Society. They have lots of programs to help support cancer survivors financially and emotionally!

+ Read More
Dave
1 month ago
1
1

Michelle, The suffering of your soul mate is over, while yours has transformed to a shape that will someday taper to a point of light - an eternal reminder, and guiding star. I am saddened, and yet through your words, relieved. I will forever admire, and be humbled by your grace. Better that you had not been burdened so, but no candle can bring forth its light without some part of it begin consumed. Dave

+ Read More
Jackie
5 months ago
1
1

Dear Casey and Michelle- I admire your strength, courage, and resilience that you have demonstrated for one another and to the world. You offer inspiration for others afflicted with this horrible disease and those who provide their care. With love, Jackie Gabrysh

+ Read More
Alexandra Gorczynski
17 months ago
1
1

Miss you both and sending love and positive thoughts! ♥ ♥ ♥

+ Read More
Holly Hopkins
21 months ago
1
1

Sending all of the good vibes and juju your way! xoxoxo

+ Read More
Vaughn Corbett
22 months ago
1
1

Love you man! Keep that chin up!

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Dave
1 month ago

“How lucky I am to have something that makes saying goodbye so hard.” Winnie-the-Pooh

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Billy
3 months ago

Dear Casey and Michelle, you are both an inspiration to me and my prayers will go on; it's hard for me to understand so many things, but the one thing that is clear is how much you two have shown everyone around you what true love looks like... God bless, love, uncle Bill

+ Read More

$102,998 of $105,000 goal

Raised by 1,125 people in 22 months
Created May 9, 2017
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$100
Anonymous
3 days ago
JC
$250
Judy Carrino
12 days ago

Michelle, I bought a spice orange mini convertible from you. We met Casey when you and him were at Back Porch. I always asked Chad how you and Casey were doing. He told me about Casey and the Cancer in Dec when I traded in the car I bought from you. I was absolutely heartbroken. Tonight I texted Chad to check in on Casey and he told me he had passed. I am so so sorry. ❤️❤️ Please call if you need anything. 516.413.8077. Judy Carrino.

$100
Anonymous
19 days ago
$80
Anonymous
19 days ago
ME
$50
Mike Edwards
1 month ago

Hope to see everyone at the next pancreatic cancer walk.

$100
Anonymous
1 month ago
MB
$25
Melissa Baird
1 month ago

I donated because while I was at a coffee shop enjoying my warm drink I heard the barista share about his friend, Casey, who had recently died. Death is one of those things we as a culture simply don't talk about, so it was refreshing even as it was heartbreaking to hear this friend of Casey's talk openly and honestly about death and his own grief. I am holding Casey's friends and family in Light and Love today.

Casey Grabowski
20 months ago
8
8

Thanks everyone for your continued support!

+ Read More
Casey Grabowski
8 months ago
5
5

Thank you all once again. My outcome may not be certain, but your love and generosity is, and nothing can change that!!

+ Read More
Jaimie Watts
22 months ago
4
4

I work for the American Cancer Society - I'm happy to help navigate support that you may need!

+ Read More
David Grabowski
14 months ago
3
3

Keep up the good fight, Casey! Sending you all our love from the West Coast, cousin.

+ Read More
Ron Ozer
6 months ago
2
2

A wonderful inspiring article - https://www.delawareonline.com/story/news/health/2018/09/04/husbands-pancreatic-cancer-battle-demands-full-time-caretaker/1124419002/

+ Read More
Helen Marie Graves
22 months ago
2
2

Be sure to contact your local American Cancer Society. They have lots of programs to help support cancer survivors financially and emotionally!

+ Read More
Dave
1 month ago
1
1

Michelle, The suffering of your soul mate is over, while yours has transformed to a shape that will someday taper to a point of light - an eternal reminder, and guiding star. I am saddened, and yet through your words, relieved. I will forever admire, and be humbled by your grace. Better that you had not been burdened so, but no candle can bring forth its light without some part of it begin consumed. Dave

+ Read More
Jackie
5 months ago
1
1

Dear Casey and Michelle- I admire your strength, courage, and resilience that you have demonstrated for one another and to the world. You offer inspiration for others afflicted with this horrible disease and those who provide their care. With love, Jackie Gabrysh

+ Read More
Alexandra Gorczynski
17 months ago
1
1

Miss you both and sending love and positive thoughts! ♥ ♥ ♥

+ Read More
Holly Hopkins
21 months ago
1
1

Sending all of the good vibes and juju your way! xoxoxo

+ Read More
Vaughn Corbett
22 months ago
1
1

Love you man! Keep that chin up!

+ Read More
Dave
1 month ago

“How lucky I am to have something that makes saying goodbye so hard.” Winnie-the-Pooh

+ Read More
Billy
3 months ago

Dear Casey and Michelle, you are both an inspiration to me and my prayers will go on; it's hard for me to understand so many things, but the one thing that is clear is how much you two have shown everyone around you what true love looks like... God bless, love, uncle Bill

+ Read More
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