Q stands for quality, not quantity

Final lesson from a journey through chronic illness

December 30, 2019 (published)
By Christy Corp-Minamiji

Caroline Mitter was a student at the University of California, Davis, School of Veterinary medicine and a member of the Veterinary Information Network when she was diagnosed in 2014 with a rare chronic disease called mitochondrial cytopathy. The subsequent five years saw her robbed of her ability to finish veterinary school, to walk, to eat, and even to breathe without assistance. However, throughout that time, she trained her own service dog, moderated several Facebook groups and wrote poignantly of life with a chronic illness.

Days before her death in September, Caroline asked a friend to help write a series of essays chronicling lessons learned from her disease. With help from Caroline's father, who was her medical advocate, Christy has drawn from memories and Caroline's own writing to create a four-part commentary. This essay is the final piece in the series.

QoL is a common abbreviation in veterinary medicine. It stands for quality of life. I'd always assumed it to be the same in human medicine, but in my travels with Caroline, the emphasis from the medical field seemed to be on prolonging days rather than on enhancing the quality of those days.

On the other hand, when I went looking through Caroline's Facebook photos to select pictures for this series, a pattern leaped out.

Dogs. Dogs everywhere. And cats. And horses. And the people she loved. And hills, trees, birds, oceans, and fields and fields of grass.

Caroline's photos, except those taken to detail her medical journey, are full of joy in living.

Many of us putter through life, caught in the mundane, drifting from one errand to the next, without projects or passions.

Photo courtesy of the Mitter family
Caroline bought her first service dog, Cricket, as a puppy and trained him herself. The photo was taken in December 2015.

Even in her last year of life, Caroline — despite the worries and practicalities expressed by friends and family — took on a project, adopting and beginning training of a second service dog, Raven, alongside her first service dog, Cricket.

Facebook, Aug. 16, 2018

I haven't done an update on myself lately because I'm struggling again with quality of life and being tired of the fight. Even as I welcome Raven into the family, my body and soul are very aware that it has been a long four years since diagnosis, and this calendar year alone has brought more than 50 visits to medical offices and ERs. And yet, at the same time, I’ve been continuing to plod forward, learning how to sit with my pain and be with it when there isn't any other option, and taking advantage of a kind offer to help me get back in the habit of training Cricket on a regular basis.

She was so ill during that last year that Raven, a Labrador retriever pup, had to be fostered by friends until Caroline was home from the hospital long enough to take him. By then, he was nine months old.

Caroline realized she wasn't likely to live to complete Raven's training but by gods, she was going to try. She needed something to focus on, something to do, and a place where she could make a difference.

Bringing an adolescent male lab into a two-bedroom apartment that already housed an adult male golden retriever and three human adults (one of whom came with a small hospital's worth of paraphernalia) meant an exponential magnification of the challenges Caroline and her parents already faced daily. Yet, it was also an exercise in joyful insanity.

This was the same joyful insanity that filled her family and friends' lives with bad puns and gleeful gallows humor.

Photo courtesy of the Mitter family
Even as her life became increasingly limited, Caroline adopted a second pup, Raven, to train as a service dog. Early on, The Ravenator, as she called him, was taught to go to a specific mat to sit or lie down.

Caroline's life was about finding quality wherever and whenever she could.

One of Caroline's last posts on Facebook was a birthday tribute to her mother that embodied this joy.

Happy birthday, Mom. I hope we get to share many, many more with you, and that you still have plenty of air conditioning and chocolate since August 31 is plenty hot in both Maryland and California, and usually in Colorado. We love you and are amazed that you have put up with all of our shenanigans, from moving out West to bringing home animals of all kinds, from insects to large, hairy vertebrates. And you’re my angel of mercy for taking care of me and the rest of the family while you’re at it, including the service dog and his apprentice. I gave you a bunch of hugs already today but I had to say this online to remind the rest of the world how amazing you are. XOXOXO

And then there was this post, one month and four days before she died.

I'm sorry for the lack of updates. A dear friend has been sick, my own central line has been replaced multiple times in the last month due to arrogant medical professionals refusing to listen to what worked for the patient, and it's still exhausting to have to drive to San Francisco for appointments. Fingers crossed, I'm cautiously optimistic that this line will stay in, since the doctor actually listened and said that my requests sounded reasonable and logical.

This all adds up to a fair amount of time lying in bed, taking pain meds, etc., and less time doing fun things with my dogs, but [my friend] Gina Spadafori very generously arranged for a house call of a different sort — a horse call! I got a personal visit from the well-named Patrick and his person [Katie Pittman], both of whom are retired officers of the Sacramento Police Department! Patrick has seen it all and didn’t bat an eye at me driving my wheelchair up near him, then using Cricket to help me stand and walk a bit closer. I haven't gotten to hug a horse neck or kiss a velvety nose like that in a very long time. Their visit was very much appreciated and [another friend] Alana Curtis was kind enough to donate her time and trailer space, since I don’t think the Yolo County bus system appreciates passengers over 1,000 lbs.

Despite the chaos, Raven's training IS moving forward, inch by inch. We’re working on just the bare necessities of settling and loose leash walking in some new places with new distractions. I put Cricket's regular vest (as opposed to his mobility harness) and a "training" leash on him for some walking around the train station, which Dad got some pics and video of. I can't even tell you which week that happened, though I guess my phone remembers the date.

For now, just grateful for family, friends, animals, and at least moderate pain management.

VIN News Service photo
The author, Dr. Christy Corp-Minamiji, met Caroline in 2014, the year Caroline had intended to join the veterinary profession.

None of us who knew Caroline wanted to lose her. The desire to extend her QoL into quantity of life wasn’t limited to physicians who feared the medications that made her life and pain bearable. Part of me still wishes my friend was here to trade bad puns and hold my hand. But more and more, it was us holding her hand while she struggled for breath and for the words with which to pun.

Our cupcakes and tea dates had long since given way to changes of IV fluid and nutrition bags. Caroline was on total parenteral nutrition (TPN), without the ability to eat food for more than three years.

When the only antibiotic that could kill the bacteria causing her final sepsis produced immediate and profuse vomiting and diarrhea that ran in streams off her hospital gurney, Caroline knew it was time to go. The Q for which she had fought for so long was gone.

On July 15, 2019 — two months and nine days before her death — Caroline described the difference between quality and quantity of life.

I guess I'm late by a few days, but happy TPNiversary to me! 3 years of gutting it out without regular meals.

I feel more like a weary survivor than a gleeful celebrant. I do still want to send rude messages to the doctors who said that my gut "had" to work, that long term TPN wasn’t possible. I’m so grateful that it is, because some of the most amazing people I have met or talked to online are reliant on TPN.

I won't lie, the food cravings can be bad at times, and it's not an easy road. But no one ever said that life was going to be easy. Choosing TPN — hooking up every night or morning, changing the batteries in the pumps, getting labs done, sometimes throwing up bile or dealing with other complications, and repeated procedures and hospitalizations for line replacement, treatment of infections, and so on — means choosing life. The choice to keep fighting our diseases for one more day is also a gift from the amazing researchers, clinicians, and patients who got the state of the field to where it is today …

I'm getting so very tired of repeated hospital visits, of pain and nausea, of reflux and vomiting because my gut function is getting worse, of meds not working because I can't absorb them some days. I continue to keep moving forward, grateful that I have been given another chance to do so and knowing that those chances won’t keep coming forever. But I'm also reevaluating, once again, where my priorities lie as far as spending time in the hospital or driving all the time to see specialists, versus living out what life I have left with my dogs and local friends and family. I'm working a bit more on setting things up so that if my situation changes suddenly, I can hopefully have the kind of death that isn't wildly contrary to how my priorities in life have been.

I’ve never had a bucket list, unlike many patients with diseases like mine, because I've been too busy living my life and working on the next thing to think about the last anything.

I've been lucky to experience a lot of amazing things in my three decades of life, [such as] galloping over jumps on beautiful horses .... Vet school itself, in combination with the learning I did in college, was a life-changing experience, of learning not just about the course material but about stretching myself to the limits, about learning to rely on friends and classmates, about acquiring new mentors and learning from the patients and clients themselves …

I've loved some truly amazing animals and people, some of whom have drifted away, but they always leave happy memories and a space that, while painful, has always been somehow filled by a fortuitous encounter with some new person who is amazing in their own way. Even as my physical world seems to have shrunk, my circle of contacts has only grown, and some of the people I've met online because of my disability and disease have truly changed my life for the better …

Photo courtesy of the Mitter family
In her Facebook caption for this photo from 2014, Caroline noted that the beach was one of the few on the Sonoma Coast in California easily accessible to someone with physical disabilities.

When my legs and lungs allowed, I hiked whenever I could, or drove out to the coast to sit and meditate to the repetitive splashing and swirling of the waves. I got to go backpacking alone in the Coast Range and sleep with the coyotes howling outside … and drive the dirt roads of Mendocino National Forest on the way home from a volunteer trip, stopping to pick blackberries along the road and then blasting music ...

When I could still eat normally, I was a foodie and had a lifetime’s worth of calories …

So really, other than wanting to train a bunch more dogs, there isn't a lot that's really MISSING. I had plenty of chances to do things that would trigger my acrophobia, and I stand firm in my decision to skip those.

There are many trails left unwalked, mountains and rivers and beaches left unvisited, but the Caroline that could walk them quietly, and take them in in the way they're meant to be taken in, is gone. Sadly, she died in 2014. Maybe this is really the obituary for my past self that my palliative care doctor suggested. The past Caroline, the one with the long hair, also loved swimming and going IN the water in the ocean (the Atlantic warmed by the Gulf Stream, thank you, not the icy waters of the Red Triangle here), but she's gone, as my weak diaphragm can't even take going into a therapy pool above my waist, and my central line MUST stay dry.

So maybe it would be nice to wade in a pool with a walker where I can keep the upper half of my body upright. I've arranged a special horse visit for some goodbyes and settling of unfinished mental processes. I have two dogs who are happy to learn new things and go outside on adventures at any time of day or night, and having Raven is teaching me about a different type of dog who sees the world differently from either of my other two dogs. ...

The previous Caroline, the one who died with the old plans for my life when I got diagnosed almost exactly five years ago, was a traveler with severe wanderlust. I still experience that but travel is much more difficult, logistically, physically, mentally, etc. I don’t think the new Caroline is ever going to set foot on an airplane because of all of the risks and complications, and I'm still greatly grieving the loss of the ability to visit the people and places I love on the East Coast.

I think the best I can hope for is being stable enough to do some road trips along the West Coast. Even crossing the Sierras is quite daunting because I struggle at even moderate altitudes. But even a round trip to San Francisco or Palo Alto is exhausting, and staying in hotels is difficult because I've come to rely so much on being in a hospital bed. I have trouble not just with breathing but with choking on my own saliva and mucus if I end up flat on my back. Perhaps I would be best off in hotels that have couches in the rooms, so that I can sleep kind of draped over the back of a couch. I would very much like to spend some more time talking to the waters of the Pacific, and losing myself in the mountain wilderness somehow (yay for backup wheelchairs).

Anyway, I'm not ready to shove off by any means, but my own mortality continues to come up in the medical decisions I make, the countless trips to the hospital and choice of whether to stay inpatient for "just in case" type scenarios, and my decreasing quality of life at home due to worsening GI function and swallowing.

If anyone is still reading, one of the things I miss the most about being stuck in bed so much is being able to go visit people. I used to be the person who would go drop in (with permission) and randomly visit to talk with friends or plan expeditions with them. A lot of my ability to do that sort of thing died with the old Caroline, but I still love seeing and talking to people. I would love to have more people come visit and just tell me what they're up to. I feel like I talk about myself here on FB and even in person, it can be hard to ignore the medical equipment surrounding me. I'm happy to explain about it but I really miss just having human contact in person and talking about happy subjects. Come visit and show me several hundred pics of your baby, or your cat, or whatever. Not only do I not mind, I would be delighted. I worry that I may not live long enough to see my sister have and raise kids, so I love the FB posts from all of my friends who have kids, and some of them have even met me in person and survived without learning any new vocabulary.

And there is Caroline's final lesson and gift: Focus on the quality of your life and that of others. Visit your friends and loved ones. Share the pictures, the puns, the pups and the laughter.

About the author: Dr. Christy Corp-Minamiji is a 1996 graduate of the University of California, Davis, School of Veterinary Medicine. She has practiced small animal medicine and large animal medicine, and worked in the biologics industry. Since 2011, she's worked for the Veterinary Information Network, in communications. Christy and Caroline became friends in 2014. Over the years of their friendship, they shared cupcakes and tea, tears and bad puns, and lots and lots of golden retriever hair. Christy wrote this commentary to honor one of Caroline's final wishes.

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