Casey has F-ing Cancer
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
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
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.
Also if you live in the West Coast and are planning to meet up please send me a message ✌️
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.
Now go enjoy your Sunday with a cocktail & a meaningful conversation
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.
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
“How lucky I am to have something that makes saying goodbye so hard.” Winnie-the-Pooh
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