Don’s Story

Site created on July 18, 2022

Welcome to Don’s CaringBridge page. Updates on his leukemia journey will be posted here.

The back story:

Don had not been feeling well for weeks - fatigue, shortness of breath, coughing, bloating. The good wife that Trish is, she was bugging him for a while to see a doctor & finally convinced him to go. 

On Friday, July 9 he was going to head to Convenient Care Plus at Carle (the Plus means it is adjacent to the ER due to the likely need of advanced diagnostics & such - typically where the Antons of Urbana go given their history.) It was a rainy Friday and on the way from work in Bloomington, IL Don's work vehicle hydroplaned off I-74 into a ditch. Luckily he didn't roll, but the car took some significant body damage. (So sorry, Legacy Solar friends!!!!)

After the tow truck & state trooper pulled him out of the ditch Don & Trish made their way to the Carle ER, skipping CCPlus. Don was clearly in shock from the accident. The car accident complicated the insurance & check in process slightly, but Trish was was successful in focusing the doctors & nurses' attention on Don's ongoing symptoms that were not due to covid-19. 

After several hours of blood work, scans and tests the ER doc let Don & Trish know that he had been diagnosed with acute leukemia and needed to be transported ASAP to the University of Chicago Medical Center where there are doctors and treatments that specialize in leukemia in particular. In the middle of the night Don was transported by ambulance to Chicago and Riley & Trish drove up from Urbana and Ryan , who lives on the north side of Chicago now, met them at the hospital Saturday morning. 

The first 48 hours was filled with absolute shock. Although Don had kidney cancer 7 years ago & lost a kidney due to it, all were focused on his heart & lungs, as he also had open heart surgery that same year to repair a broken heart valve. But, life has a funny way of seeing how much one can adapt, especially the Urbana Antons when it comes to health. 

In the first few days of being up at UC Medical it was learned that there were at least 5 other individuals from Champaign County who had been referred in almost the same way as Don within the last few months. Don's medical team is well aware, but offered no explanations.  Covid-19 was brought up but they said that it could take decades of research to know if covid-19 infections altered patients' blood to know if there was a connection. They seem focus on treating the known, not the unknown. 

Immediately after the diagnosis friends & family both in Urbana-Champaign and nationwide had already come to organize & support.  Care for the dogs, Pete & Piglet, was arranged through the summer. Ryan received contributions from friends & family to help him Uber safely after work during the week from his office in the Chicago Loop to the south side, as he was advised by the nursing staff to not take the train as the station is located in an area known for high crime. The Antons/Bellers/Stells & friends from northern Illinois helped with the weekend hotel bills in the Hyde Park area of Chicago so Trish & Riley to be close to Don and a convenient place to rest when he needs to nap or have a procedure done. Grocery & meal delivery cards, coffee shop gift cards, and care packages arrived daily!

Don spent 6 weeks of the summer 2022 in Chicago. At the time of his first discharge he was considered in remission but would need at least 4-5 more cycles of chemotherapy to keep him there. He successfully returned to UC Medical in September for the next follow up round, but things went downhill from there.

Don spent the greater portions of September through December hospitalized locally at Carle for dangerous infections, thus delaying his chemo for months. This resulted in the cancer returning in full-force with no answers from the various options that chemo treatments would offer.

By winter time the UC staff was considering evaluating Don for a stem cell transplant. Although a long & complicated process, it is curative. Don’s younger sister, Amy, tested as a 100% match. Things were looking up and plans were being made to relocate to Chicago for the long (minimally 3 months post-transplant) treatment starting in February.

During a routine appointment day at UC Med in January, however, it was discovered that the at-home, oral “maintenance” chemo that Don was taking at the time wasn’t working at all & his cancer was back to the same levels as the start of all of this.

He was hospitalized 2 more times at UC in the spring for chemo & finally achieved remission to a point where Northwestern Medicine in Chicago was going to accept his case for transplant, but the last dose of chemo at UC attacked his body & immune system so badly he ended up in the ER at Carle with a brush with death due to sepsis in early May.

Within 1 week’s time we went from preparing family & friends for what could be the final goodbye to him once again rebounding and being pu on a fast track for transplant! The northwestern team wanted to move fast knowing his body couldn’t take another round of chemo so he was admitted by the end of the month to start the process.

On June 7 Don had his stem cell “re-birthday” thanks to his sister’s life-giving donation. He’s now working on his body accepting those cells & his new immune system this summer as a patient at Northwestern.

Our team of cheerleaders near & far have also been a key part of all of us surviving this. Don, Trish, Ryan, & Riley are eternally grateful for all the support. This would be a million times harder without the love & help of everyone near & far. 

Newest Update

Journal entry by Trish Anton

“How are you holding up?” is the first thing people ask when they see you after loss. It’s really all we know to say. And the answer is just so complex that language really doesn’t cut it, so I have found myself apologizing at times because I can’t really give an answer beyond “I’m ok.” Maybe I can attempt to explain it through the ways I’ve occupied my time this summer…


I’m reminded every day that Don’s not here on the earth anymore, and particularly every night when I’m home alone in the new house we built a year & a half ago to grow old in together. Some nights the grief is so overwhelming I have no choice but to let it swell up and take over. There’s no point in trying to avoid it because what I’ve learned the hard way from other losses throughout my life is that it will eventually catch up to you. “You just have to go through it.” “Time heals.” “Let the emotions come.” All the books on grief that I’ve been reading this summer say the same thing. 


In grad school I actually was a TA for an undergraduate class on death & dying. Of course at that time the work of Elizabeth Kübler-Ross was part of the standard curriculum - the stages of experiencing death as well as grief. But science has evolved so much since this model was introduced. Neuroscience over the past few decades can now explain how trauma impacts the brain - actually does damage, but also can repair itself as new pathways of understanding one’s new life existence are rewired. The work of Mary-Frances O’Connor (The Grieving Brain), Paul Conti (Trauma: the Invisible Epidemic), and particularly Lisa Shulman’s Before and After Loss: A Neurologist’s Perspective on Loss, Grief, and Our Brain have all afforded me a deep dive into what’s going on inside of me, not only since Don’s passing, not only from his diagnosis in the ER last summer, but through all the medical and life challenges we experienced over the last eight years. All of the cumulative trauma has triggered grief and my way of experiencing and recovering from grief that is unique to me. 


Writer Anne Lamott shares “…your life comes apart in pieces in a way that you never agreed to.” “Even years later, if you have broken a bone, from an X-ray a doctor can still tell it was broken. Grief is similar, in that anyone’s life is forever changed because of loss, even when they have adjusted well.” Mary-Frances O’Connor writes in “The Grieving Brain.” 


But they all also describe relearning how to put one foot in front of the other & recreate your new life.


In the days following Don’s death, his wise Aunt Peggy sent me several books with a note that they were “for when you are ready”. Not knowing when that time would be, I immediately started The Phone Booth at the Edge of the World by Laura Imai Messina. It’s a lovely story of how thousands of people grieved the loss of loved ones with the help of a “wind phone” on the top of a mountain after the tsunami hit Japan in 2011. I “talk” to Don most nights, giggle when I see something he’d find funny, and say “touché” when I am experiencing something that he would have lectured me about. I think we need a wind phone here in Champaign Urbana on the grounds of the UI’s Japan House. 


Anne Lamott and Cheryl Strayed have become my odd, imaginary “bffs” through their books (also introduced to me by Aunt Peg.) Deeply personal, gut wrenching stories of their own lives, losses, hitting rock bottom, and finding winding paths to keep going seem to really hit me this summer. 


When you go from crisis to crisis, control and preparing for disaster is your coping mechanism. “You’re so strong” “You’re a rock.” Well, the rock eventually cracks, and that’s not such a bad thing. Suddenly going from crisis adrenaline for literally years to a full stop with no one to care for from day to day, no job to get up for, and no little kids to corral actually forces you to sit in your grief. There’s a quiet and a still that I’ve never had before during other losses because of all the outside demands. This time, nothing but me and time. Permission to crack. The thought of 2 to 3 days of bereavement leave for someone who has lost a parent, a child, or a spouse is absurd if you think about it. This has been almost a full time job for me over the past several months. 


I know this for sure…I am not going through grief alone. The kids, Don’s sister, his dad, his huge family, his friends, former colleagues, and so many others who have reached out, sent over a thousand cards (I counted them this weekend as I re-read them), people sending prayers and arranging for masses being said in his memory - every life he touched has suffered a loss. When an immediate family member dies it’s easy to selfishly think they are YOURS alone and grief is yours alone. At first the kids were overwhelmed with the amount of text messages, phone calls, and cards that kept coming in. I think they thought they needed to be left alone in their grief. But what I try to explain to them is that everyone gets a piece of this grief. Their dad didn’t just belong to us. You spent 30 years with someone, but it is upon their death, that you learn more about them. People have come out of the woodwork with stories of his impact on their lives and because they are feeling so deeply they feel more connected to us. “Some people seem to have been assigned to me” Anne Lamott says of the community that surrounds you after a loss. 

 

Lessons about grief come to me from a variety of other places, too. Yes, in the title to this essay I reference Bruce Springsteen and even Barbie, as in “The Barbie Movie.” 


Everyone who knew Don knew he was a fanatical Springsteen zealot. And I grew up in New Jersey. My very first concert was “Born in the USA” at the Meadowlands (the stadium where the Giants & Jets both play for those of you outside of the tri-state area.) Bruce was a common language for the two of us. Our wedding first dance was to “Jersey Girl”. I lost track of how many concerts Don went to over the years, as we only went to some of them together, because I sang too much & distracted him from the experience so he started going alone. (I took no offense, as I know how horrid my singing voice is!) 


We went to his last ever concert together, however, in March. Springsteen’s 2020 album “Letter to You” is included on his current concert tour. It was a deeply emotional night for Don in Milwaukee as he fully understood & embraced the message of mortality delivered by the E Street Band. Bruce’s 2016 Memoir “Born to Run” set up the Broadway show (that I flew Don to to see by himself) in which Bruce was a storyteller more through spoken word than his music, reflecting on the eras of his life and career (sorry Taylor Swift fans, Bruce beat her to it & has 3 decades more of music to chronicle his “eras”). Bruce is telling his fans this is likely the last time he & his legendary band will be able to give this type of electric and age defying arena tour. Don knew this was his last time seeing Bruce. We cried about it on the car ride to Milwaukee, we cried about it during the concert, we talked about it afterwards in the car ride back to Chicago for what would be his last round of chemo at the University of Chicago before the stem cell transplant attempt at Northwestern. An acoustic solo of “I’ll See You In My Dreams” was a fitting end to the concert set list, and it’s a pretty fitting song right now. 


“The road is long and seeming without end

The days go on, I remember you my friend

And though you’re gone and my heart’s been emptied it seems

I’ll see you in my dreams.


I got the old guitar here by the bed

All your favorite records and all the books you’ve read

And though my soul feels like it’s been split at the seams

I’ll see you in my dreams.


I’ll see you in my dreams

When all our summers have come to an end

I’ll see you in my dreams

We’ll meet and live and laugh again

I’ll see you in my dreams

Yeah, around the river bend

For death is not the end

And I’ll see you in my dreams.”


He repeated all of those songs again at Wrigley Field, the concert I went to with Don’s sister Amy about a month after Don’s death. These songs were for us left behind this time, though. And I’ve seen him in my dreams a couple of times since July. He’s always healthy and jovial, but then disappears. Same story with each dream I remember. No sadness, just letting me know he’s ok and then he moves on. Just like the butterflies that have been visiting many of us since the weekend he passed in Chicago. “For death is not the end.” This keeps me going every day. 


About 2 weeks after Don’s passing a friend took Riley & I to see “The Barbie Movie” at a drive-in. I really didn’t know much about the movie and like most thought it was going to be a goofy flick about a toy I had absolutely no interest in as a child. But, it was important to get out of the house & start reengaging so I went. About half way through I found myself with tears streaming down my face over scenes in which Barbie finds herself confronting her purpose, learning about aging for the first time, and having to reinvent herself. Of course I absolutely fell in love with the overarching message of feminism, but for me it was again the messages of mortality that hit hard. Never would I ever have imagined connecting with Barbie of all characters, but Margot Robbie as well as Rhea Perlman delivered such touching performances to capture the vulnerability of life that after going to see it 4 times in the theater and now owning the digital version I find myself embracing pink Birkenstocks with gusto. And it brings me just plain joy, too, which I know I am allowed to experience. (Wait until you see my Halloween costume!)


I used to float, now I just fall down

I used to know but I'm not sure now
What I was made for
What was I made for?…
'Cause I don't know how to feel
But I wanna try
I don't know how to feel
But someday, I might
Someday, I might…
'Cause I, 'cause I
I don't know how to feel
But I wanna try
I don't know how to feel
But someday I might
Someday I might
Think I forgot how to be happy
Something I'm not, but something I can be
Something I wait for
Something I'm made for
Something I'm made for”
- Billie Eilish 

 

I’m starting to get to a point where fond memories are outnumbering the sad ones. I smile when I think of him more than burst into tears. I remind myself that he got to see the Cubs win the World Series. He got to be a father. The love he imparted upon our 2 kids is palpable. He loved being a teacher until he didn’t but then found a second career with the most loving people he could have ever called colleagues. He saw Bruce maybe 2 dozen times (again, I lost track.) He traveled all over the world and found that Nice, France was his most favorite spot on earth. He was the one who cried tears of happiness when I crossed the finish line in Memorial Stadium completing my first (and only) full marathon. He was the life of a family party. I laugh out loud every time I think of all the costumes I made him wear for Christmas card photos or Halloween costumes! He learned how to brew his own beer. He baked me my Aunt Millie’s knot rolls every Christmas and they may have been better than hers. He was the best dog dad ever to our seven adopted dogs (over 27 years.) He was the one who would take most of them to be put down when it was time, which is an act of such deep love and respect. Fifty-one years is not enough, and maybe fifty-one years is plenty. 


I’m ok. I’m going to be ok. 


Get living, people. 


“…When your best hopes and desires

Are scattered to the wind

And hard times come, and hard times go

Hard times come, and hard times go

Hard times come, and hard times go

And hard times come, and hard times go

Yeah, just to come again

Bring on your wrecking ball

Bring on your wrecking ball

Come on and take your best shot 

Let me see what you’ve got

Bring on your wrecking ball”

  • Bruce Springsteen



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