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
(technically tomorrow the 17th)
Dates never held much value to us. We never really celebrated birthdays or anniversaries, or made a fuss, we weren’t into gift giving just because of a date.
We had more then we needed everyday.
But the death dates, diagnosis dates, bad news dates, these I can’t escape.
I woke up today, fed the cats, walked the perimeter of the inside of the house, basement, and exterior like I do every morning. Not sure what I’m looking for.
I decided I would take my convertible to go get a cup of coffee, (still in my pjs).
I haven’t driven this car very much this season, the passenger seat hasn’t been moved since Casey was the last person to sit in it last October when I took him for the last ride with the top down.
Well instead of getting a coffee to go.... somehow I just ended up at the beach ( for not local friends that’s almost 2 hr drive)
I just space out and sort of came too and I’m walking into a restaurant/bar I worked at one summer about 17 years ago, ( yes in basically pjs ha)
I last time I was here was last year with Casey. He was quite sick but still walking (though not well) we got nachos & our favorite sandwich to split.
I ordered the same. I’m just sitting here looking at much more food then I can eat,
(still didn’t get that coffee).
I miss the quiet of companionship.
Much of the time me and Casey were silent when it was just us 2. We liked long drives , sitting in cafes & bars quietly, talking if necessary but never filling space with junk, mostly just being physically present. I knew what he was thinking and vice versa.
It made things very easy.
Casey also always new how to find me.
From our very early days of dating, where he would just show up at movie theaters when I was out with others friends and find me, yes in the dark calling my name ,( so embarrassing ha). To my work trips later in life, (he was NOT invited on) , I’d hear a knock on the hotel door, like in Chicago, and in he walks. Oh hello !
I have hundreds of stories like this.
Without communication he just knew how to find me.
I guess I’m looking for him now.
For those that enjoy the political component and wonder what we actually did I’ll just touch on some bullet points (if anyone has more specific questions I’d love to share it but I can get pretty involved for the lehman reading, so just message me)
PanCAN meets every year in June to March to Capitol Hill and each state meets with their states senators and representatives in meetings.
Us being the Delaware constituents were pretty fortunate (unfortunately I’d like to say things are bipartisan in cancer funding but they are not)
Being in a blue state we have very receptive senators and representatives who are all very educated on the issues & receptive.
So what did we asked for:
41.6 BILLION for NIH research and fiscal year 2020 specifically 6.5 of that earmarked for the National Cancer Institute.
10 million dollars specifically from the Department of Defense for PANCREATIC cancer research ( not lumped in with many other cancers)
People think the DOD just does defense work that is not true The DOD is one of the wealthiest departments and they have funded cancer research for decades but not Pancreatic as a stand alone. We now have a completely separate “line item” for pancreatic with monies not being split up between different cancers.
And we ask that our Congress & Representatives join the “Caucus (group) of the Deadliest Cancers.”
As most people know there’s hundreds and thousands of caucuses politicians join
( most of them do nothing just looks good on paper, but they never even meet or take action ) But we ask/want them to join “The Deadliest Cancers Caucus”
So basically you march to Capital Hill and meet closed door with your said states Congress/Rep’s one on one in a meeting.
You have sometimes only 15 minutes to pitch personal stories, state facts and statistics & pitch, and then you ASK directly “do I have a YES on these three issues”
Its beautiful how this country and democracy CAN work and the ability we have as constituents to ask for things.
For Delaware we had YES’s to all our funding requests and two yes’s to joining the caucus. They were warm and we are fortunate not all states are as welcoming.
The second component of advocacy day is PanCAN rolling out all the new research that is starting up and all the new discoveries of last year/s which is a ton!
The biggest initiative is something called Precision Promise. For the first time the clinical trial platform is being started by a grassroots organization, not by big Pharma or Universities
With strict rules that every pharmaceutical company has to have full share/transparency with research sharing to be part of this program!
Clinical trials have never been driven in the United States like this.
It’s huge actually!
It’s also way too involved and no one would read it ha! But if you are interested please reach out to me directly and I will share for those in the pharmaceutical /medical world what it means.
And lastly we talk a lot about early detection / gentics. I can’t stress this enough if you have had someone in your family with pancreatic cancer you must go in for genetic testing, (if insurance does not cover the max you can be charged is $250) this is not to be taken lightly I can’t do it for you, & I can’t stress it enough.
Pancreatic cancer is the second cause of cancer deaths in the state of Delaware and it will be the second in 2020 in the entire US. With only a 9% survival rate outside of five years as patients are usually dead within months of diagnosis we have to do better!
Thanks for reading
I was feeling quite positive and then I checked my phone this morning and another friend of mine lost her husband yesterday he was 52 his name was also Casey he was married with children, this is the sobering reality and this is why we bang on Congress’s doors!
I see people keeping track of their growing infants, posting propped up pictures of babies with the number “5” ,
pictures of women’s Alfred Hitchcockesqe profiles, “five months” they proclaim!
Couples are planning vacations for five months out, “we’ll take the scenic route and look at leaves”
I think in math only. 5 months, minus 20 some years .... hmmmm I’m still 96% away from getting back to balance to zero.
Time spend vs time dead. All logic and reason don’t serve me here. Only my equation, clear, get back to zero.
Post trauma & acute grief nibble at short term memory. In five months I’ve locked myself out of the house and cars multiple times, I have left doors unlocked & lights on for days at a time. I’ve looked in my refrigerator to find food I have no recollection of buying but I have the receipts to prove I did.
I’ve received next day messages saying “it was lovely seeing you” just the night before and yet I have no memory of any conversation with them.
My brain has become a conservationist, reducing power, making the necessary budget cuts. This thoughtful organ behind my eyes is trying to protect me, the only way it knows how, by dimming the lights on the darkest folds.
I don’t dare turn them back on.
I only way to survive is in the dim.
Many contacts here (GoFundMe) over lap and/or follow my Instagram devoted to Casey/life pre/post cancer/death or my personal FB which unfortunately is also basically a page of devotion:
But I’m sure there are some folks that don’t overlap and this was our only communication, so I still like to use the Go Fund Me as another/continued way to communicate.
It can be very disappointing and sad after death a lot of correspondence, family, support, questions or concerns evaporate with their life.
So I thought I would maybe just give you a brief bullet point of catch ups, updates, etc for those interested or making inaccurate assumptions.
I’ve been very busy with my grassroots effort for the Pancreatic Cancer PurpleStride walk in Wilmington which will be next Saturday, June 1
Our team has been in and out of third and fourth place without any corporate sponsors, with us just pounding on virtual doors.
All the money for this goes to research & I fully support this organization .
I’m really proud of the work and our team You can still donate until May 30!!!
Make sure you follow link & donate to Team Casey
Obviously next weeks walk will be incredibly difficult for me. Last year Casey was with me & even though living with a terminal illness he was stable that day & pushed hard! He was my prince and in great spirits for last years walk.
I miss him so damn much.
Next I will be going to DC at the end of June for three days for the National Pancreatic Cancer Advocacy Day. These are very involved meetings/workshops with members of Congress, healthcare professionals, insurance professionals etc; talking about research, funding, clinical trials, access to healthcare, access to new treatments etc.
I will be put in front of a lot of important people and a lot of different groups Yelling our story!!! With all the hardships and trials and tribulations that should not of happened. I have a lot to say!
Secondly I think people should know not everything is rosey and buttoned up when somebody dies, even if you know their death is inevitable. I am still fighting lots of legal concerns, I am saddled with an overwhelming amounts of paperwork & IRS battles. I am still fighting many medical bills, I write letters and I negotiate nonstop.
When the mail comes everyday I get sick to my stomach.
Almost daily I’m contacted via mail or phone from “ambulance chasing” heartless people trying to take my home and remaining assets. It’s a sin what a person is put through after walking through hell.
Casey had a very limited amount of life insurance, I know people of told me it’s nobody’s business but I just want to make it clear there was no pot of gold at the end of the death rainbow, life is very difficult.
I have applied for a small business grant for the store, if that does not come through unfortunately I will need to close Mesh Vintage and concentrate on just sustaining myself.
I am still on Casey’s cobra which I’m allowed to stay on for a year which is $700 a month. Some of you know if I have a chronic autoimmune condition I‘ve had for 10+ years (it’s not something I openly discuss because I never want any attention to be diverted away from Casey) but obviously that complicates health insurance & livelihood.
I have of course tried to access anything from city and state and social services and unfortunately I have been turned down because I’m a small business owner.
Ultimately my home maybe sold which happens after loss. A lot of people have given the advice that says “you should never make big decisions within your first couple years of grief” but unfortunately not everyone has the luxury of taking time for themselves or just allowing the grief process to percolate,
sometimes it’s a matter of survival.
So it’s a delicate dance I do daily ( it’s only been 4 months...I know it feels like eternity )
But it’s equally important for me to advocate all these things for Casey. I still have every intention of starting the Casey Grabowski Electronic Music Fund.
I’d still love/want to promote his music more & I still of course plan to stay very active in the pancreatic cancer community, but I also need to survive, have a safe place for myself & cats ...so that’s what’s going on in my neck of the woods, clearly, transparently.
Life after young death is uncharted territory.
As always thank you for reading & taking the time. I know we all got “stuff” but sharing/unloading verbal/written baggage actually does help a bit.
With love always M & C
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
Truly it is better to stay naturally numbed out for a while. I believe it is the body protecting itself for survival.
“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