For Quality of Life at the End of Life

$60,643 of $100,000 goal

Raised by 508 people in 3 months
Created February 13, 2019
Friends of Kathy, Kim and Greyson
on behalf of Kim Acquaviva
During the past few weeks, family, friends and colleagues have witnessed the courage, dignity, honesty, grace, and strength of Kathy Brandt, her wife Kim Acquaviva and their son Greyson.  Kathy has been diagnosed with advanced stage ovarian cancer and according to what they have been told, she will not survive this disease. With her family, she has made the profound decision to forego chemotherapy or other treatment that might prolong her life but drastically diminish the quality of the time she has remaining. With this decision, she is “walking the walk and talking the talk” of everything she has contributed during her career in the hospice and palliative care world. With this decision, she is also gifting us with an example of courage and how we too can face the end of our lives when it is inevitably our turn.

To thank her for this gift and show support during this grace-filled but difficult time, the goal of this GoFundMe campaign is to try to raise as much money as possible to alleviate financial worries during the months ahead. This is precious time for Kathy, Kim and Greyson to focus on being together and building memories – not worrying about money.

We are powerless to make this all better, to take away the sorrow and the suffering, to reverse the randomness of cancer’s horrid reach. But we have the power to give as generously as we can to ensure that Kathy, Kim and Greyson know they are loved and they are not alone as they move into the future.
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This is the summer of making memories. We are going out to eat, seeing friends, building Lego sets together, going camping, etc. When Grey wanted to see the latest John Wick movie I asked to go with him so that we could hang out together.

The past few times we’ve gone to the movies I’ve purchased tickets to the slightly more expensive theaters with the reclining seats so that I can sit comfortably for a few hours.

Since Kim wasn’t going with us and we’d need to Uber we decided to see the movie in DC rather than head out to our favorite theater in VA. The thing about the recliner seats is that they are reserved seating, so I purchase them online and select where we sit in the theater. I went online, and the only options for were shows in the regular theater and a second theater, which was marked “Recliner seats, 4D, Reserved seating.” So, I think we’re golden, I purchase our seats in the theater with the recliner seats and we get an Uber.

When we walk in the theater it was obvious that these weren’t regular recliner seats, nor were they the usual seats. They looked like something you’d see at Disney. Once we were seated and I had a chance to look around I noticed that the individual seats were segmented into groupings of four, they were elevated off the ground, and there was a button on the arm rest that read “water on, water off.” I quickly whispered to Grey, “these aren’t regular movie theater seats, these are like the flight simulators that rock and shake based on what’s happening on the screen.”

His eyes grew wide and he said, “well this is going to be interesting.” Before the movie started we had a quick preview of the functionality of our seats, the seats shook as a car engine started, then they tilted forward and back matching the action on the screen. It didn’t seem too bad.

The movie starts with someone trying to kill John Wick. Within minutes everyone in the theater is laughing as we are getting tossed around for a good ten minutes as John tries to defend himself. Suddenly John is stabbed in the shoulder and I feel the first “punch” in the back. It turns out the chair wants us to feel every time John is seriously injured. If you’ve seen a John Wick movie you know where this is headed. John ALWAYS gets injured. In every fight.

Since my pain is primarily in my back and shoulder, here’s the image you need in your head. Every 5 minutes or so, every time there was a fight scene, I was leaning forward while the chair was rocking and moving. I probably looked like I was trying to curl up in a fetal position during every action scene.

Each fight scene lasted between 5-10 minutes, so basically I’d get to rest for a few minutes and then wait for John Wick to get punched, kicked, stabbed, shot, etc. Did someone say that going to the movies was relaxing?!

Needless to say to say mission successful -- it was a very memorable day at the movies for Grey and I!
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An update from kb:

I’m saving the “healthcare system” money - and yet my cancer is breaking our bank.

We are so appreciative of the hundreds of donations we’ve received from friends, family, and complete strangers. When Heather Wilson and Joy Barry set up the Go Fund Me after my operation we were floored. We were worried about how long I’d be able to keep up my consulting work (turns out, not very long) and manage our ongoing expenses. We hadn’t considered the healthcare costs because we opted for palliative care. The problem is, my primary palliative care “treatment” isn’t covered by insurance.

I take between 8-10 medical marijuana capsules a day ($5 per pill) to manage my pain and anxiety. That’s $50 day, $350 a week. I also vape to supplement the pills as needed. All told we are spending about $2,000 a month on my pain/anxiety medication. I also take CBD pills, miscellaneous other medications, and take injections once a day, all of these except the CBD have co-pays. The CBD, which costs $1 a day, isn’t covered.

My drain supplies cost us $850 a month and office visits for the oncologist are $408 each time we go. I can’t begin to untangle all the charges from my operation, scans and related visits. But needless to say, we paid thousands of dollars.

All of these added costs arriving when I can’t work, we are moving, and we still have our regular mortgage, car payments, etc.

I know that patients with more complicated or longer illnesses will pay tens of thousands more than Kim and I will, I guess I’m just a little resentful that our antiquated ideas about marijuana, combined with our rigid Federal bureaucracy, and payers that are wary about providing treatment that is a Schedule I substance, according to the Federal government.

I’m saving the healthcare system money by not having any more scans, no longer seeing my oncologist, doing everything possible to avoid the ER through expert pain and symptom management. And yes, I’d do it even if it didn’t save money because it’s what’s right for me. I just wish that our healthcare system could figure out a way to pay for those things which truly add value to patient quality of life, even if it means breaking out of its comfort zone.
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An update from Kathy:

The disease is progressing. I knew it was, but I couldn’t tell. Now I can.

Cancer is growing in my abdomen. Fluid is building up and causing my belly to swell and even though we have the tube to drain the fluid, because the fluid is loculated, the drain can’t access all the fluid. Which is a bummer.

Right now my stomach doesn’t hurt much, but I can feel the pressure and know that it will just continue to grow over time.

I’m not scared of the pain. We have a meeting with palliative care to come up with a plan to address it. And I know that Kim and the team will keep me comfortable. It’s what the pain represents, the ticking clock.
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Yesterday we put in an offer on a house in Charlottesville and it was accepted -- an exciting day but at the same time, bittersweet. It’s our dream house in a beautiful neighborhood in Charlottesville - it has literally every feature we were looking for. We were SO ecstatic the seller accepted our offer. But nothing dampens one’s home-buying enthusiasm quite like realizing this is the house in which your spouse is going to die over the summer. Or worse - the house your spouse will never live in if they die before move-in day mid-June. I want to host Thanksgiving with Kathy and have a house full of family and a basket full of crescent rolls I burned because I was too busy laughing to pay attention to the oven timer. I want to sit next to Kathy on Christmas morning wearing dorky matching pajamas and opening stockings with Greyson. I want the house to be an envelope Kathy, Grey, and I stuff full of memories over the next twenty years. Knowing Kathy won’t be with us a few months from now to stuff that envelope makes my heart hurt.

Stuff your envelope with memories today. That's what we'll be doing today.
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$60,643 of $100,000 goal

Raised by 508 people in 3 months
Created February 13, 2019
Friends of Kathy, Kim and Greyson
on behalf of Kim Acquaviva
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