In 2014, a young, vibrant woman named Brittany Maynard moved from the home in California she had known all her life so that she could die on her own terms in Oregon. Diagnosed with glioblastoma, arguably one of the most monstrous forms of cancer in this world, Maynard was willing to uproot her life, put her face out into the world, and share a most intimate decision with a universe of strangers in order to help people understand why someone might make the decision to hasten their death.
With little fanfare and no more than a small sidebar in the local newspaper, California has just become the fifth state to legalize assisted death for terminally ill patients. When I read it, on a plane on my way to deliver a talk on how we deal with death in our culture, I cried. I cried for Maynard, and for my mother (seen here on the left at last year’s Fourth of July bash), and for me.
Like so many others, I was transfixed with Maynard’s bravery in opening herself up to scrutiny and criticism. I put myself in her place and wondered what I would have done in the same situation. As a veterinarian who routinely helps people gently end the lives of pets suffering from terminal disease, the idea is not as challenging to me as it is to many. Especially with brain cancer- something that can rob you of the essence of who you are, turn you into someone else, snaking its way without order or reason through your control panel until your body can no longer hang on.
It is, to me, one of the most petrifying propositions out there.
So when my own young and vibrant mother was diagnosed with the very same cancer not five months after Maynard’s death, I fell to my knees and cried with grief, with anger, and above all with terror. For we, too, live in California, and my mother’s delicate health by the time she was diagnosed did not allow us the luxury of moving anywhere. Three weeks before her diagnosis, she was hiking though Red Rock. Three weeks after, she was bedbound. It happened that quickly.
My entire family was focused on my dear Aunt Michele’s mobility, and no one knew what was brewing with my Mom.
I found myself preoccupied with fear for my mother, and worry about what I might do if her pain and suffering were unable to be controlled. Hospice and palliative care is excellent, but even that has its limits. People I thought were my friends sent me all sorts of horror stories they have heard about this cancer, expressing remorse at the news and the hope that my mother, ever so dignified, would not be one who would lose it all in the fugue of neoplasia.
I am really good at delivering an easy death. I have access to drugs no one else can get, and they are remarkable. We can give them to dogs and cats and rats and horses, but not to people. People have to ride it out on cocktails with middling degrees of efficacy. Our own perceptions make it worse: more than half of palliative care professionals have been accused of “euthanasia or murder” by providing adequate palliation to dying people, because euthanasia for a pet is mercy but for a human is dastardly. We have a long way to go in how we think of these things.
Fearing the Loss of Control
Instead of concentrating on my time with my mother, I spent most of it worrying- what would I do if the meds stopped working? How would I respond if she asked me to help her die? How could I refuse? How could I say yes? I had no reassurance that the necessary tools to control the situation were in my toolbox, and that took away from so many little moments I wish I could have back.
In the end, my mother’s cancer took mercy on her. She died quickly, as she wished, and never once complained of pain. She forgot things, felt sleepy, and drifted off oh so gently into that good night. It was a blessing, strange as it sounds. She willed herself to progress the way she wanted.
Had we been given access to life ending drugs, she would likely have filled the prescription.
Had she filled the prescription, secure in the knowledge that she had some control, she would not have taken them. There is no doubt in my mind. She didn’t need them. It doesn’t change my mind one bit as to their necessity, doesn’t make me any less inclined to cheer this new law and fight any who would seek its appeal. It would not have changed the medicine, but it would have changed the emotion, the fear, and the terror.
Because it’s not the inevitability of the outcome that matters in these situations, it’s the little bits of control we are given in times where so much of it has been taken away.
Ever since I started this blog, and even moreso since writing All Dogs Go to Kevin, people write to tell me about their pets who are no longer with them.
They used to apologize for writing, or say they weren’t even sure why they were telling me about their pet, but most people don’t do that anymore. I think they know that they don’t need to explain.
As followers of the blog know, I love birthdays. Birthdays are fun, and I love love love that my birthday coincides with National Dog Day. I always celebrate. This year, though, I could barely be bothered. It was so bad that I got a card in the mail last week from a relative and it took me a full minute to figure out why, exactly, she was sending me one. It was more than not feeling like celebrating, it was as if my brain consciously turned it off.
Part of me wondered if it was because I was finally getting sick of getting older, if my rotten back and increasing-in-number doctor’s appointments were finally clueing me in that birthdays stink. I went about my routine for the day, ran some errands, and came home to scrounge up something to eat for lunch.
And then I understood.
I have never in my life spent my birthday day by myself. Mom never would have let that happen. With the kids in school and my husband at work, it would have been inconceivable to her that I would eat lunch by myself, and we would go out. Always. Today, however, I was alone, and in that moment all the little sadnesses that piled up just felt like more than I was ready to hold.
So when people asked me how my birthday was, I said, “meh,” because it was true, and then I said, “I really miss my mom.” It probably was not the answer they were expecting or really knew what to do with, but it was honest and I had to say it.
2008/03/12 Hot Potato by Jason Taellious under Creative Commons license
Because grief is like a hot potato burning in your hands. If you don’t toss it up in the air to give your hands a break every once in a while, they get burned, and then you drop it and then have to pick it up with blistered fingers. The need to let go of what you are holding onto, for just a second, is all that lets you continue to carry it around.
So when people write, I get it, I really do. Because while many people look at someone walking down the street tossing a hot potato in the air like they’re nuts, wondering why they can’t just put it down, I just nod. It is too terrible and precious to throw away; all you can do is wait for it to cool down. It will.
Our hero SuperBrode has been enjoying the relative peace and quiet of Muttropolis, lounging in semi-retirement.
However, evil was afoot! The Malevolent Mast Cell Maniac was on the loose, wreaking havoc on SuperBrode and the good citizens of Muttropolis!
When we last left our hero, he was recovering from their last vicious battle…
SuperBrode survived, but it cost him dearly. Or should I say….D’Early?
Nonetheless, he was well on the road to recovery-
Something seemed….different. Without his Super Fluffy Ears of Wonder working in concert, he felt a little deflated. Or just cold, maybe. So he put his sidekick Tenacious V to work on a Super Secret Project. He thought it was just a hat, but she had other ideas.
When he put it on, his Super Senses were heightened! Treats were falling from the sky!
And even crazier than that, his Bionic Ear seemed to lend certain…powers.
Can it be? Does his Hawaiian ear actually bring to others the spirit of…
He certainly seems to be spreading sunshine wherever he goes.
Tenacious V has built a prototype hat with interchangeable Bionic Ears. Who knows what the future will bring for Bionic Brode?
When it comes to my dog, I am just as nuts as any other client. I can’t think logically, I panic, I just gnaw on my fingernails and try to figure out what’s the best thing to do. For this reason, I had no interest in doing Brody’s surgery whatsoever and instead entailed the services of my friend, board certified veterinary surgeon Dr. Tracy Frey of Soft Surg and the lovely staff at Animal Urgent Care, who took amazing care of us both.
I would like to state for the record that even though Pet Doctor Barbie occasionally runs into situations similar to my own in my posts, I am not her, much as I wish I could be. I’m not that cool. Dr. Frey, though, may actually be the living embodiment of Pet Doctor Barbie in flesh and blood, just with more appropriate clothes.
And when I say that, I mean it as the greatest of compliments: a beautiful and accomplished woman who kicks ass in a tough field while unapologetically maintaining her sense of self and style (it can be done!) Pouf, her amazing and adorable Pomeranian who needs to have her own Instagram account stat, also accompanied her to the surgery.
Before: when he has no idea what he is in for.
Right after induction, shaving up his ear and discovering just how pale he is under all that fur.
Getting a 3-dimensional field sterile in multiple planes takes some derring-do.
The surgery instrument wrap is, of course, also pink.
And we’re off! First stop: hunting for lymph nodes. These will be removed and sent to pathology to check for evidence of metastasis. (say no! It has to be no!)
Planning out the incision. We needed to get 3 cm past the edge of the prior biopsy in order to maximize chances of complete excision.
Eew! This was stuck in a bag and is currently being examined in a lab in Sorrento Valley. Kind of makes those pig’s ear treats a little less appealing, no?
Blood and stuff. This is why I prefer internal medicine and dermatology.
A hemostat works to clamp down on one of the major blood vessels of the ear while Dr. Frey plans a closure. One of the benefits of working with a board certified surgeon, in addition to their technical expertise in surgical technique itself, is the cosmetic outcome. Cartilage can do weird bendy things (have you ever seen a botched ear crop?) so we spent a little time discussing the possible looks for Brody’s ear nubbin:
-teeny tiny pittie point
We went for the third option. Being a surgeon’s work the incision line is so precise you can barely tell it’s there.
Then we spray painted him silver so he could look like a cyborg! Just kidding. That is collodial silver spray and it is actually medicinal in nature.
He woke up super fast. Groggy, but good. I sat in the cage the whole time <3
Post op warm compresses and lovin’ at home.
Every time I look at him I think of this scene from Harry Potter:
So I’ll be happy when his hair grows back. Until then he is simply “The Dog Who Lived.”
And guess what! Our neighbors brought toys and love and this is him yesterday.
Dr. Frey was right! He did just fine.
So now, I wait for the various parts of Brody scattered around the country to be analyzed, and we’ll go from there. So far, so good.
As a veterinarian, I’ve seen lots of cancers: lymphoma. Melanoma. Osteosarcoma. Hemangiosarcoma. Mast cell tumors. Wait, those are just my own dogs I’m talking about. When I factor in my clients, I think I’ve seen it all.
Dogs get cancer, at very high rates: about 50% of senior dogs die of it, if the statistics are to be believed. Why? Well, if you read overly simplified, graphics-intensive websites by people who really don’t know what they’re talking about, they will tell you that they know why cancer happens: GMOs. Preservatives. Kibble. Microwaves.
I wish it were that simple. It’s not. And the reason that line of thought drives me nuts is that it has sent so many lovely people into spirals of depression when their dog dies and someone on the internet convinced them it was their fault because they, the owner, did something terrible like feed their dog kibble or use a plastic bowl. People end up in therapy because of things like this.
Cancer is not a singular diagnosis; the type and breath of neoplastic disease means there’s often little resemblance from case to case; a transmissible venereal tumor bears very little resemblance to a splenic hemangiosarcoma. If we could pinpoint cancer to one cause, we’d all be rich. And yet, with all this secret knowledge, overall cancer rates aren’t budging.
Because I love a breed known for having one of the highest rates of cancer (is it the fact that Golden Retriever owners feed worse food overall? Or is it genetics?) I watch Brody pretty closely. Knowing that 60% of Goldens get cancer in their lifetime, I spend a lot of time inspecting him for lumps. As we speak, the largest observational study of its kind is currently underway to help us better understand what’s going on. In the meantime, you do the best you can but truthfully, there’s not a whole lot of ability to predict and prevent cancer. Even for the people who home cook organic food (sorry. Do it because you want to, not because it will make your dog live forever.)
You can save money (and life expectancy) by doing some simple things:
Knowing he is an at-risk breed, I do what I can to try and keep Brody healthy. When he gained too much weight on his food, I got the weight off. Obesity is thought to be a risk factor for cancer. Just as importantly, I get his bumps evaluated and when I find one, I don’t mess around.
The dog eats like a king; I give him the good stuff because I care about quality ingredients, though not enough to condemn people who can’t afford it. But even with his high end diets, at age 6, he’s on his second cancer. The first one, a melanoma, was excised two years ago and has yet to recur- because we caught it early. And now we have this: a little teeny ear lump.
I thought it was no big deal, but I got it evaluated anyway. See? We vets do it too. A lump is a lump is a lump. Until you get it microscopically evaluated, you just don’t know. I just got the call last week: it’s a mast cell tumor.
I’m thrilled we got this diagnosis
Am I thrilled Brody has a mast cell tumor? Of course not. They stink. Despite the fact that the visible mass is only half a centimeter, this type of tumor has tons of microscopic disease and is notorious for requiring huge surgical margins for a complete excision. For that little tiny tic-tac mass on his ear, he is very likely going to need to lose his entire pinna. (I’m getting a surgical consult this week.)
However, losing an ear is minor compared to where these things end up when people wait. You can lose an ear, but you can’t lose an entire head, for example. This is small beans compared to what lots of pets need to go through later in the game when masses grow. If we get a complete excision, this should be a closed case. And guess what? It’s so much cheaper than tons of radiation and chemo and massive surgeries. Win-win for the dog and your wallet. I’m not happy he has it, but I’m happy I know now, early.
Why wait? Aspirate that shizz!!
What one thing can you do to guarantee your pet won’t get cancer? There isn’t one.
What you can do is maximize their chances of survival and recovery: Don’t mess around. Dr. Sue Ettinger, veterinary oncologist and all-around brilliant person, has an initiative called Why Wait Aspirate that is as simple as can be: when a vet tells you that a lump is ok to “just watch”, what does that mean? When do you do more than watch it? Here’s Dr. Sue’s guidelines*:
ASPIRATE OR BIOPSY IT!
Easy peasy, no pun intended. Of all the things you can do to help your pet live long and live healthy, none matters more than early detection.
*Photo Credits: Calendar by Michael Hyde, Flickr Creative Commons license; Peas by Isabel Eyre, Flickr Creative Commons License
I wrote my mother’s eulogy the day of the service, this Sunday. I was stuck. I wanted to share all the profound things we had said to one another over the years, but we just didn’t have that kind of relationship defined by meaningful, deep philosophical conversations. As I sat with Brody’s head in my lap, it occurred to me that we also did not share in deep conversations, but it never lessened our bond. As soon as I thought about that, it all started to come.
My mother was not one for profound conversations. Don’t get me wrong- she was a profound thinker, absolutely, but I think she found the idea of sitting around talking about philosophy either pretentious, or simply a distraction from the things that really mattered, like dessert. This was a hard thing for me to accept.
I spent my whole life waiting for us to have those deep, intense, heart to heart talks where we would bond over politics, being a woman, or a mother, or a wife. It was really important to me that my mother and I share that kind of moment, and I’ve been working at getting her to engage in one with me for as long as I can remember.
I started when I was eight, by attempting to start a Mom and Me Book Club discussion. I said, “Mom, what does the word ‘conceive’ mean?” I often asked her about words I didn’t quite understand.
She said, “What’s the context?”
So I opened up my Judy Bloom book from the library and read, “I was conceived under the Million Dollar Pier.”
She pursed her lips, pointed to the Encyclopedia Britannica and told me to look it up. That was the end of Mom and Me Book Club, though to her credit, she never once banned me from reading Judy Blume- or anything else, really.
When I was in high school, my subversive reading habits led me to writing all sorts of editorials for the school newspaper about the availability of birth control for teens, the failures of the Oceanside Unified School District, Administrative Team, abortion. I spent a lot of time in the principal’s office. No one could figure out how I grew up to be such a diehard feminist. They all thought my sweet little mom would be mortified to know what I was saying. She knew. She’s the one who planted the seeds in my head in the first place.
Still, I was bound and determined for us to get our deep moment of profound conversation. I kept giving her chance after chance. When I went away to college, I was down for every holiday, and many weekends. She was there for every milestone event in my life. She was at the birth of both my children, the doctor’s appointments when I was worried about something scary, the triumphs and the defeats and the myriad tiny moments in between.
When the kids got older, we’d meet for lunch every week. Brian hated those lunch meetings, because ‘lunch’ was always followed by ‘shopping.’ She’d always convince me that I needed a new pair of boots, a necklace, a pair of earrings. She did not believe in practical gifts. Gifts should be beautiful and shiny and able to be physically opened and lord help you if you used one of those little gift bags instead of wrapping it with actual paper and ten pounds of curling ribbon.
Christmas, 1980-something ish.
Our interactions were a lot like those presents: plentiful, beautiful, and fun.
When she got sick, I panicked, because I was thinking, you know, all this time together, hours and hours and hours, and we still haven’t had those profound conversations that mothers and daughters are supposed to have.
I tried, once, to talk to her about what was going on, and she said, “That’s depressing. Pshaw. Turn on Harry Potter.”
I asked her if she could have anything, what would it be. Anything, Mom. And she said, “I want to go and watch the balloons in your backyard.” That was our life these last two months, Harry Potter and balloons and just being together.
I sat with her every day, Dad and I and the kids, making sure that when she was ready to impart her wisdom, I was not going to miss it. So when Dad was taking the kids to swim class, and I was sitting next to her on the bed, she held my hand, looked at me, and said in as earnest a tone as I have ever heard, ‘Can I ask you about something?’
I was thrilled. This was it. This was the moment I had been waiting for my whole life.
“Of course, mom.”
She took a deep breath, fixed me with her gaze, and said, “Do you know what Spotted Dick is?’
“It’s a spotted pudding, right? What made you think of that?”
“I don’t know. It sounds gross.”
“OK, Mom. I won’t make you eat one.” She giggled.
As the weeks wound down to days, I knew I had to figure this out if I was going to be able to move forward without regrets about wisdom left unshared. So I thought about what Mom would tell me to do- and I looked it up.
I found a book about dying, and it laid out the things that you’re supposed to say in order for someone you love to be able to die peacefully: I forgive you. I love you. We’re going to be ok.
I put the book down and shook my head. That’s all they had to say?
Forgive? There’s nothing to forgive. There were no unresolved hurts.
I love you? That’s nothing new. We said that every day.
We’re going to be ok? She knew that. We were always trusted to figure things out for ourselves, and though she was there for me if I needed her, I rarely did.
And that’s when I finally figured it out. There is no need to have profound conversations when you live a profound life. She truly did lead by example, with grace, kindness, toughness. For all those friends and family who are so upset that they didn’t get a chance to tell her something, don’t fret. She knew. And you knew her.
I will never have to wonder what advice she would give me in the long days ahead, where she would have stood on an issue. She has built a place in my heart minute by minute and day by day for decades now, and now that she’s disappeared inside its confines, I will never worry about whether or not she is there.
Patricia Anne Marzec, the greatest woman I’ve known.
Has it already been a week since my mother died? I feel like I’ve been in a haze, dropped in the middle of the ocean and swimming only because I have to, not because I actually know where I’m going. I’ve found a new appreciation for Dory, a different nuance in Finding Nemo.
I don’t know why life insists on dumping everything on us all at once instead of pacing things one month at a time, but it seems to be a rather consistent theme. What I’d like to be doing right now is sitting in bed with the sheet over my head, but there’s just too much to do.
When a death ends, the work just begins. Closets to go through and memorials to plan and family dynamics to breathe through. In this case, all these tasks are intermingled with the other responsibilities of being a mother as well as a daughter. I pick my mother’s casket, and on the way home pick out a birthday cake for my son. That sort of thing.
My daughter graduated fifth grade this week. I was not really aware fifth grade graduation was a big deal. I thought we might hear a song, clap politely, and get on with it. I was sorely mistaken. What we were in for was a two hour event with five speeches, two processions, music, slideshows, choreography. It was longer than my high school and college graduation combined.
The line for the auditorium starts an hour and a half early. I walk into the auditorium with the grandparents behind me, mentally counting off the number of seats I needed: 2, 2, 2….oh. 2, 2, and 1. It’s the little moments like this that catch you unaware. Mom would never have missed a graduation.
When the ceremony finally ended and the kids file into the lobby, I pull out the flower bouquet my father picked up for us on his way over. I hand it to my daughter, who stands surrounded by children wearing leis made of dollar bills. Mom would have brought a lei. She always did stuff like that. My daughter smiles politely, seeming vaguely disappointed, but she always seems vaguely disappointed. I am told this is part of being a tween. I am too tired to care.
I was supposed to volunteer at the promotion picnic today, but I leave early because I have to get Brody to the groomer in advance of the family arriving this weekend for the memorial. That, and order programs, write a eulogy, bring an end of the year gift to the teacher, bring a blanket to the funeral home, clean the house, find something to wear, pick up the kids from school, celebrate something, I guess. People offer to help, but these are all tasks I need to do myself.
I am exhausted, in a bone wearying way I didn’t know could exist.
Brody comes back from the groomer, and sits next to me on the couch. He is never disappointed with his lot in life. He just is. I put my head on his back and inhale, feeling the rising waves of grief intruding on my to-do list. He smells like one of those old Strawberry Shortcake dolls. When I cry, he doesn’t say anything or search for unhelpful platitudes or edge away uncertainly. He is surprisingly absorbent.
He is here, breathing with me. It is enough. For now, he is enough.
Did you know tomorrow is National Donut Day? Donuts have always held a special place in my family’s heart. Mystical, you might even say.
I grew up in New England, where Dunkin Donuts are as ubiquitous as Starbucks and McDonalds. Driving through for a box of Munchkins was our way of celebrating, commiserating, or simply getting a sugar fix.
For my grandfather, the Dunk was also a neighborhood gathering place where he went to shoot the breeze, down a jelly donut with a coffee regular (it’s a Massachusetts thing), and read the newspaper. Always a neatly folded newspaper. At his memorial service, there was actually an entire Dunkin Donuts contingent who came to pay their respects, which made me feel better about sneaking a bag of Munchkins into his hand at the wake. It’s what he would have wanted.
When my parents moved to California in the mid-80s, we lost that donut connection, because Californians aren’t really that into donuts. They became a special occasion sort of thing, and with that excuse my mother made sure that when we got them, they weren’t just regular old donuts but those big chocolate slathered cream puff monstrosities. It was our homage to the past, comfort food for the sweets obsessed.
When Emmett was diagnosed with lymphoma, I bought him a doggie donut because, well, what else are you supposed to do. Enjoy your donuts while you can and party on. I took what to be a bit of an iconic photo that sort of defines this blog:
When life gives you lemons, throw them away and eat a donut because making lemonade is way too much work.
My son turned 9 yesterday, and as I was planning what treat he wanted to bring into school for his classmates, I asked him: “Cupcakes or popsicles?”
“Donuts,” he promptly replied. “OK,” I said, “you shall have birthday donuts.”
At 5 am on his birthday, he crawled into bed with me. “I couldn’t sleep,” he said. “I’m just so excited about my birthday.”
At 5:30 on his birthday, my mother died.
And so we sat, dumbstruck, for a bit and attended to the things one must attend to, and then my dad and I sat on the bed side by side and said, “Now what are we supposed to do?”
So we went and got some !@#$!#@!#@!# donuts.
You can be sad and happy at the same time. That is the joy and pain of being human.
So when I say I’m happy tomorrow is National Donut Day, I mean it. It is a day to not only eat a literal donut, which I hope you do, but to put aside the petty crap of who bought the best end of the school year gift and whether or not your net carbs are coming in under 30 grams, but to say,
“I AM EATING A DONUT BECAUSE I CAN AND I AM GOING TO ENJOY IT, DAMMIT.” Because one day, you might wish you had.
And if you want to make me smile, I would love if you- or your dog, or you and your dog*- have a donut in Pat’s honor tomorrow (or today, who cares) and share a photo of you enjoying it with me. We would both love that. And for every photo here, on Twitter, or Instagram with the #brainfood I will donate a dollar up to, I don’t know, $500, to the National Brain Tumor Society because Mom still had a lot of donuts left in her to enjoy, dammit, and two months was not nearly enough time to let her know that.
Mother’s Day, 2015 at the beach. Each day is a gift and a chance to eat a donut.
*And by donut for your dog, I mean dog treats shaped like donuts, or other your-dog-appropriate ring shaped goods
I know I’ve been remiss in posting, and I wish very much I could say it’s because I’ve been so busy creating amazing and exciting book campaigns and creating a plan to hit the NY Times Bestseller List in July. I still want to, don’t get me wrong, and I still plan to at least give it ago. But that’s not why I’ve been quiet.
I guess you could say I’ve been doing nothing. Nothing. Let me explain.
I’ve said to many people when I started working with Paws into Grace two years ago it was like my career and work finally made sense. I liked working in a clinic, I liked the day-to-day stuff, but only two jobs in life ever touched my soul and felt as close as one could come to a calling: writing, and veterinary hospice. Stepping into hospice work was like buying a new pair of leather shoes and finding them already perfectly worn in.
If you recall, I took it a step further when I began speaking on the topic at various Ignite talks, the first one being in January this year at NAVC:
Then later, in San Diego in February:
Putting those two talks together forced me to really dig into why I thought this work was so important- first, I realized, we can do a lot to help people understand the process of grieving a pet.
Then, I realized losing a pet is in itself a really important lesson in how to lose a person, or more importantly, how to help them gracefully experience the end-of-life process. I really, really wanted to share that message.
I remember a lot of things about that night at Ignite San Diego, namely about how I said that all people should hire me so their kids wouldn’t stick them in a nursing home later in life because they were too scared to deal with them. I pointed at my parents and said, “See? Aren’t you glad I made this promise to you guys in front of like, 200 people?” And they laughed, because we knew that was all a long time away.
It all happened very suddenly: the fall, the seizure, the diagnosis of an inoperable brain tumor. One day, my life was filled with the usual concerns, getting annoyed with pseudoscience on the net, figuring out Teacher Appreciation Week. The next day, I forgot everything except this: My mom, still young, beautiful, and full of life, looking at the same diagnosis that made Brittany Maynard a household name last November. It is perhaps one of my worst fears, this particular beast, and now it has invaded someone I love more than words can adequately express. The person who, in other circumstances, would be the one I called for support.
Now she was looking to me, and then it all made sense, this need to understand the importance of hospice and advocacy and learning to let go gracefully. I wasn’t meant to help other people understand the difference between living poorly and dying well. I was doing all of this preparation, whether I knew it or not at the time, for my own mother.
In the space of two weeks, I moved my parents into my house, earned frequent parking points at the hospital, and had to dig deep into everything I ever stood up for and ask myself if I really meant it when I said I thought people should change how they dealt with illness and end of life in their families:
Would I help someone honor their own wishes to say no when everyone in an authority position was pushing for treatment? It seems like oftentimes it is easier to do all the treatment than to say no and risk upsetting loved ones who want you to try it.
Would I be honest with my children in an age-appropriate way or just kind of try to avoid it for a while? Use the old la-la-la-everything’s-fine approach our family has relied on for generations?
Could I bring this whole experience into my house, ask my husband and my children to take on this really intense experience, when it would be a lot easier on them- in the short term at least- to keep my parents at arm’s distance, in their own home, in skilled care?
The two weeks during the diagnosis phase was an unending slog up and down the linoelum floors of the hospital, trudging from one cramped waiting area to another: CT. Neurooncology. Neuroradiology. Neurosurgery. Each appointment took an emotional toll that far compounded the physical one, leaving mom too pooped by the end of the day to do more than go to sleep. Waiting rooms filled with other seriously ill people nervously picking at the fraying vinyl upholstery, doctors too aware of the gravity of the diagnosis to be able to offer a smile.
My mother was so upset at the prospect of poorly effective radiotherapy she didn’t want that she could barely speak after the appointment with the radiologist. He had recommended six weeks of daily radiation and chemo, tied to those halls and the stale air. Glioblastoma, a poorly researched and dreaded cancer- even in the world of oncology, it’s a bad one- has had few treatment advancements in 25 years. Treatment doesn’t cure the disease, just kind of kicks it down the line a little.
“And if we choose not to do the radiation?” I asked.
“You could do nothing,” he said, “But I don’t recommend it.” No one did, but nonetheless that was exactly what Mom wanted.
So we did it anyway, leaving through the doors of the hospital one last time into the cool evening breeze of the evening marine layer rolling over, before calling in the ‘Nothing’ that is hospice. So far, Nothing has included the following:
Watching hot air balloons fly by in their sunset flights
Getting through all the Harry Potter movies
A comprehensive plan for managing every symptom, every discomfort
Greeting the children every morning and tucking them in every night
Trying every flavor of macaron at the local French bakery (lemon = best)
Getting our nails done
Going through old photo albums
Driving to the beach
Brody, exhibiting that strange instinct most dogs seem to possess, hasn’t left my parents’ side. He’s been so protective, in fact, that he came barreling out of their room last night to bark at me when I got up at 2 am for some water.
My mother has chosen to die well instead of living poorly. But really, I can’t call what she’s doing right now dying. The walls of the hospital, filled with fear and extended wait times and the ever-looming spectre of illness, feels more about dying. She is living. Each moment, each breath of spring air, each hug, is imbued with a gratitude and a joy it wouldn’t have had in a different situation.
I don’t believe one person’s tragedy is any greater or less than anyone else’s, no story more worthy of being told. But I do hope that in sharing this one I might reach someone who is struggling with a similar situation or just looking to understand why a loved one may have made the same choice.
We’re terrified, but we’re ok. We’re devastated, but happy. I have an incredibly high tolerance for stress right now but Rubio’s running out of pico de gallo leaves me in tears. We are doing what we can and continuing what routines we are able to do. We are together, and that matters most.
We are doing nothing but living, and that is enough. It is, in fact, everything. And this Mother’s Day, we’re having a hell of a celebration.
I always assumed my experience as a veterinarian would serve me at some point when I needed to navigate the human healthcare system. The similarities between veterinary training and medical training, after all, lend themselves to a good number of similarities: how to read scientific articles critically. How to read an MRI. When to call the office and say, this prescription doesn’t seem quite right, is this what you wanted?
The similarities are all well and good, but I never understood, in the marrow of my bones, until recently that what would serve me best was our differences.
We MDs and DVMs are both given an ethical mandate to ‘do no harm’, which we as communities hold dear. Our duties to our patients are guided by this overarching principle; we look to it for direction in complicated cases, fall back on it when we feel conflicted about a request, and hold it like a flashlight when we shine a light into the cave of an uncertain future, looking for direction.
But oh, do those lights shine in very different spectrums.
As a veterinarian, I agree. We veterinarians occupy a strange place in the medical field in that most of us view it as not only an option but often a moral imperative to ease the pain of a traumatic death process through pharmacologic means. We are precise in our process, with the goal of minimizing stress and pain. We view it not as causing death, but as easing an uncurable pain. In this, we view our fulfillment to do no harm.
But in the human medical field, the prevailing attitude is by and large that hastening death is, indeed, harm, and anything we do to prolong a life is conversely fulfilling their requirement to do no harm, no matter what it does to a person or family in the process.
Even if it is multiple craniotomies.
Months of chemotherapy.
Daily radiation therapy with a bevy of ill effects. And you have to get screwed down to the table wearing one of these while they shoot brain shrivelling radiation beams at your head:
Not to cure a disease, but to make a patient breathe one more day, for better or for worse. It is the second most common utterance to me in my hospice work: we do better with our pets than we do our people when it comes to end-of-life decisions, and truly, friends, we really do.
I was recently-by invitation- listening to a doctor outline just such a series of events and possibilities to a patient who didn’t want to partake in them, who has been looking- without success- for someone to say, it’s ok to say no to months of hospital visits and yes to fewer days filled with this:
Plenty of people do want everything we have to throw at disease, and more power to them all. Thank God for modern medicine. But when did it become not only an unthinkable mistake, but an outright affront to the medical community to say, “thanks but no thanks”?
Searching for information on hospice and palliative care has been as challenging as getting bootleg rum during prohibition, furtive conversations in hallways and whispered hints at such necessary things as family support and respite care, secondary concerns far down the to-do list after scheduling yet another CT. I never knew how much of an afterthought the emotional wellbeing of the patient truly is in many medical decision making processes.
“So what if they don’t want to do this?” I asked.
“Well, this is the standard of care,” the resident responded.
“And if they choose not to do this?” I asked again.
“Why wouldn’t you?” he said, dumbfounded. He never did give me an answer.
I once worked in a very stressful place. It was an emergency hospital, always about 3 staff members short of a full crew and 25 people piled in the lobby waiting for treatment. It was a large staff of doctors, about 10 at the time, and as how things tend to happen in nutso environments the staff would get nutso a little bit as well. Stress does that to people.
You never sat still at that hospital; it was run run run, a dog bleeding out in room 1, a dyspneic cat gasping in room 2, five clients wanting updates on the phone. We didn’t catch up on things there so much as run as fast as you can so as not to fall further behind. The whole place had a surreal Through the Looking Glass feel to it, now that I think about it.
In the midst of this chaos, one or two of the more enlightened veterinarians managed to float above it all. Dr. Naidus was one of them. Needles would be flying and people screaming and papers falling to the floor, and he would be solemnly nibbling on some healthy snack or another, surveying the scene with an amused glance before going back to whatever it was he was doing.
The interns and newer veterinarians such as myself were drawn to him like an acolyte to a guru, trying to figure out the secret of his zen-ness. He’d laugh and tell us when we were old we’d be too tired to get worked up over the small stuff too. (He was right.)
Clients loved him as much as we did. Every Christmas, when I considered myself lucky to get a hand soap from the rare client who could remember my name, baskets would start showing up in the treatment area with his name on it. Baskets and baskets and baskets. He always shared.
Dr. Naidus got more gifts than the rest of us put together, including the owner and the boarded surgeon, and when we tried to figure out the secret of people loving him as much as they did it was simple: he gave them what they wanted. Treatment, or palliation if they didn’t want to pursue heroic measures. We were in an economically depressed area and people spent a lot of time confronted with estimates they couldn’t realistically afford.
He was always kind and understanding and worked with them based on what they could do. It wasn’t, as he kept reassuring us, rocket science. Be kind. Laugh, for goodness sake, it’s not that bad.
He took the same approach with the terrified interns, who were performing under a great deal of pressure without a lot of knowledge under their belts. We’d come up to him, all of us including him up to our eyeballs in paperwork, for advice or a ‘can you take a peek’ or ‘HELP!’ and he always did, with nary an eyeroll or a sigh or a ‘in a few minutes.’ In a place where people routinely lost their sanity trying to stay afloat, I never saw the guy lose his cool, like, ever. He surrounded himself with a bubble of laughter impervious to the anxiety around him. It rubbed off.
I worked with him only briefly, but have heard news of him through my friends who remained and considered him a dear friend. I knew he had been battling illness for a while, and had dealt with it with his characteristic humor. He did well for a very long time and went on to charm many more clients in the years since we sat side by side in that chaotic treatment area, watching the world swirl by.
In Through the Looking Glass, Alice happens upon the Red King, napping beneath a tree.
“He’s dreaming now,” said Tweedledee: “and what do you think he’s dreaming about?”
Alice said, “Nobody can guess that.”
“Why, about you!” Tweedledee exclaimed, clapping his hands triumphantly. “And if he left off dreaming about you, where do you suppose you’d be?”
“Where I am now, of course,” said Alice.
“Not you!” Tweedledee retorted contemptuously. “You’d be nowhere.”
Dr. Naidus was very much this type of quiet force in many lives. I am sure he was greeted today by many pets he has helped over his long career, as they welcome him home. Perhaps he and Kevin are sharing a brew; it’s been a long journey. Life, what is it but a dream?
Rest well, my friend. Thank you for being you.
PS This is not the hospital I wrote about in this post. ;)
It is one of the sad ironies of being a veterinarian in clinical practice that most of your clients are majorly unhappy to see you. (Retrievers don’t count, they’re always happy to see you.)
The reasons are obvious: vet clinics mean temperature taking, and shots, and cold tables. Trust me, I don’t much enjoy heading off to my doctor’s office either, nice as the staff is. Those awful half length hospital gowns they give you (ladies, you know the ones I’m referring to)- cold and humiliating. I’m here for something I’m not going to like.
One of the most common things I hear from clients at a home euthanasia appointment is, “I just couldn’t bear to do this at the clinic. My last dog was shaking like a leaf when we went in for the appointment and I felt so terribly guilty afterwards.” And who can blame them for feeling guilty? Who wants their last memory of their dog or cat to be them cowering in a corner? How awful.
Not all pets feel this way about the vet, of course, but for those that do, it just adds another layer of emotional trauma to an already challenging time. Is this the pet signaling they don’t want to die? No. As pain management expert Dr. Robin Downing says, “Pets don’t fear death. They fear pain.” They are telling us they don’t like the vet, but of course we are only human and it’s hard not to extrapolate that to a bigger message that isn’t there.
So what happens in the absence of the clinic and the coat, when a pet meets me outside the office? A pleasant hello, usually. Even when I am there to help them transition. Especially when I am there to help them transition. I will be honest, I wasn’t expecting that.
I was reminded today of a lovely Golden I met last year, who was winding down a battle with cancer. When I came to the family home, their sweet girl was almost nonresponsive. As I knelt down by her side, she opened her beautiful brown eyes and gave me a huge, enthusiastic wag. We all stood there in shock, as she had not been able to do much of anything in the hours leading up to that moment. She did not fear death, or me.
In the absence of a preconceived assumption of vaccines and thermometers, pets are free to judge me based on whatever it is they perceive I am there to do. I cannot tell you the number of kisses, licks, wags, head bumps I get from pets who by all rights should be past caring who is sitting next to them. It means something.
It’s not, “Oh boy! THE DOCTOR IS HERE!”
It’s not, “That blond lady sure does smell good, like bacon.”