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
“You are not prepared for the afterworld. How do I prepare? I have come to terms with death, but that’s different. Loss of physical independence has hurt but it’s shown me that my body is a temple, a residence to some other being. Study runes?
I keep having dreams of tangible objects having some power or somehow come alive. I feel like I’ve had hundreds of these dreams but can’t describe any one, all I remember is a distant feeling of elation, or sometimes another distinct feeling.
Freedom Dreams: flying, partying, skateboarding. Brought on because of disability.
I feel like my body is a museum and my rotting organs are artifacts, and people wave to them as they pass by.
Working under the assumption that your conscious (spirit, etc) and body disassociate at death and your conscious goes on to do whatever (religious transcendence, space travel, inter-dimensional portals, etc) does your conscious “feed”? Like, does it need to consume to “live”? If so, what does it consume?
Will my conscious even be one cohesive unit? Can I be in a million places at once? Will I defy the limits of space and time? Can I zip through the sun?
What will I “see” without eyes? What will I think without a brain?
I’ve had dreams of floating in infinite darkness. I’ve read that the afterworld is whatever you imagine (you create your own heaven or hell).
I continue to see stark white and a pitch black apparition of a human body, black suit, black skull. I don’t know if it’s talking to me, but it’s getting more frequent.”
Only me and Casey truly know everything we lived for those 22 months, and only me and Casey truly know what we went through in the last four days. I needed to protect his dignity he made that very clear, and I needed to protect everyone else from the horror, gruesome and chaotic death that he went through.
We don’t talk about death in this modern society and tend to think Hospice has everything under control and our beloved ones just pass away gently, like in a movie but I can assure you that was not the case.
What I have seen, what I have smelled, the echoes my ears replay every night in this bedroom where I lay now have forever changed me as a human, my core has been turned inside out, cut into puzzle pieces that are impossible to reconfigure. And yet nothing scares me anymore, nothing after I have seen hell. But this was my job solely as wife & soulmate.
I do not grieve for myself or my own loss, but I grieve for Casey, I grieve for the life he was robbed, for the pain he endured over & over trying anything & everything.
I grieve when he said “I don’t want to die” only days before. I grieve when he asked me if his body was withering and I would lie and say no, and I quickly get him dressed after I bathed him so he never had to see that death had already moved in.
3 months... and it feels like another weight has been added to the chains I drag. When will the weight be too much ?
Bills keep coming, I’m actively still fighting, negotiating, pleading with such parties. People disappear, turn away, and can’t express grief. Disappointments in some, and hero’s in others.
I prefer to be transparent to speak about my grief as much as possible I choose to stay active in the pancreatic cancer society I choose to not hide My therapy is through visibility and being vocal.
I honestly don’t know if I’ll be able to sustain my business or my home. I have my own serious health condition ( 10 plus yrs) that is chronic & life long that I refuse to talk about because I never wanted any thing to take away from Casey and his story, but it’s a real struggle every day to keep your head above water; emotionally financially & singularly
I went food shopping for the first time this week since Casey passed away (one reason I was waiting on my food stamps to come through which has been painstakingly ) and two
the idea of going into a food store and not buying specifically for Casey’s restrictive diet and to prepare food for Casey was too much to bear.
How many bananas does one person need?
Casey gave me the strength to push through things in my own condition and sometimes it doesn’t seem worth it to push through for yourself :(
3 months today just stings a bit deeper.
Those that continue to reach out & donate it means the world! Those that aren’t scared to talk about death. Those that simply listen to me without judgement. Those that loved Casey, and love me. Thanks for continuing to be present.
We don’t stop caring-walking-advocating we are better then that right?! we continue to fight advocate!!
please consider joining TEAM CASEY ( link below)
we don’t say “he died so the fight ends”?!
Show up !!!
it could be your husband father sister
let’s rally !!!!
Can’t walk ?
ok no problem mon:::
( donate to Team Casey literally 10 bucks helps us meet our goal! )
all money goes to research!!!
And just a reminder I will be also going to DC and speaking to Congress in June holler ⚡️⚡️⚡️look our DC I’m a firecracker ✨
this is good work & I am honored to continue it as we all will be touched by cancer!!
it’s not just about Casey it’s about all of us and all of the ones we ❤️ dig in & stand up !!
**SELECT TEAM CASEY***
Casey left lots of notes in his phone. They’ve been almost impossible for me to read without becoming hysterical but some of them do bring me comfort I’ll share a few below:
“End of life thoughts/priorities:
1)Time with Michelle, taking care of each other physically and emotionally. This is my top priority”
“I thought I’d at least live to be 80, not 42. I will continue to keep fighting every day. It’s been 22 months since diagnosis, and every day is a struggle to not stare death in the face.”
“Why me (or why not me)? How does this fit into a list of priorities? It takes a huge emotional toll that is hard to push past. It’s like a big black curtain that you get lost in. Watching other people die while you are on your death bed is a surreal feeling, including pets”
“I can’t help feel like I’m constantly having an out-of-body experience. Like there are two of me, and I’m the healthy one trying to manage the sick one”
“Michelle has done an amazing job ensuring that our current reality is managed. She will take care of both of us until I’m gone. I am blessed in that regard”
... no Casey I was blessed to have the honor to care for you
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