Friday, February 04, 2022

On Baltimore, Botox and Covid


 Quarterly trips to Baltimore for my Botox injections are not exactly a walk in the park for my caregivers, and last week’s rapidfire trip was no exception. Although they are generally stress-filled and appointment-laden trips for me as well, they are also imperative to my recalcitrant muscles and – in some small way – to my peace of mind. These Botox treatments involve 12 painful shots to some incredibly sensitive muscle groups: the sinewy piece of flesh directly in front of my armpit, my triceps and my finger and wrist flexors on the underbelly of my forearm. The injections are intramuscular so the needle is big and the Botox burns, but in 2 to 3 weeks from now I will finally be able to stop perma-clenching my pecs and the ancillary muscles being yanked on throughout my neck and back will gradually relax. It’s not instantaneous and it doesn’t magically enable me to move my arms again, but it’s the only thing that alleviates what has come to be accepted as chronic discomfort.

 

In addition to helping with pain, these trips to Baltimore also immerse me in a world of almost shocking medical competence. As someone who lives in and (with the exception of the weather) loves Ithaca, the healthcare here – at least for someone with a progressive neurological disease – has been mostly abysmal. When I arrive at Kennedy Krieger’s International Center for spinal cord injuries (KKI), I am no longer an anomaly; it’s like stepping into an oasis of medical omnipotence. When I say things like “I’m afraid the skin integrity under my left butt cheek has been compromised,” the doctor is wholly unfazed and ready to investigate, write a prescription for an appropriate cream and suggest practical solutions. Every single MS -related problem that I have, no matter how obscure, feels almost normal at KKI. And Dr. Recio, who I have seen since 2008, is at the epicenter of all my health-related needs. He understands that people with spinal cord injuries, even non-traumatic spinal cord injuries like MS, necessitate care from a veritable team of doctors: urologists, neurologists, pulmonologists, endocrinologists, gastroenterologists, physical and occupational therapists, mental health professionals etc. etc. The only two medical professionals I currently see who have not been either facilitated or recommended by Dr. Recio include my dentist and my OB/GYN. So for me, the hassle of a 10 to 12 hour round-trip drive, the packing, the perpetually disappointing hotel stays and the inevitable crappy night’s sleep prior to the Botox appointment are actually worth it. And it speaks to the generosity and commitment of my caregivers that they willingly escort me every 3 to 4 months, because I certainly wouldn’t characterize it as fun.

What made this particular trip more trying than previous trips, you ask? Great question. Well first, I

En route to Baltimore

decided – with Mary and Shelly’s enthusiastic consent – that this would be my service dog’s first official working trip. Gem is impeccably obedient, endlessly affectionate and willing to do just about anything I ask her to do, but she is still a dog who needs to be fed and taken out to go to the bathroom. As the interior of my van was packed to the brim for a mere two night’s stay, Gem was relegated to the 1’ x 2’ space between my wheelchair and the door of my van to sit for the 5+ hour drive. We stopped twice on our way down to Baltimore and she peed somewhere in Pennsylvania at about 4 PM on Sunday. That was the last time she peed until the following day. We discovered, somewhat alarmingly, that Gem does not like to pee in strange places – especially strange places in a city without much grass. Fortunately, she has excellent bladder control, but unfortunately every time she stirred between 5:30 PM when we arrived at the hotel and 6:30 AM the next day, either Shelly or Mary would have to get her dressed in her service dog apparel and her gentle leader and walk around the block fruitlessly while she sniffed every single solitary tree embedded within the sidewalks surrounding the hotel. This happened at 6, 9, 11 and – after jumping off the bed in the middle of the night – again at 3:30 in the morning. I love Baltimore and, with the exception of only once in the 12 years I lived there, never felt unsafe, but I also never walked Izzy anywhere in the middle of the night while beseeching her to pee. Such a task seems maddening to even the craziest of city dwelling dog lovers.

Gem showing off her door opening skills in the hotel. 

The other thing that complicated this particular Baltimore excursion was the weather. On Monday morning when the alarm went off at 6:30 AM, Mary and Shelly and I made the collective decision to get me ready for my appointments and pack up the room so we could leave immediately following my 2 PM MRI. We figured we would drive at least some of the way back to Ithaca and possibly get another hotel (preferably surrounded by grass) depending on traffic etc. The three of us, with Gem in tow, vacated the Marriott and headed up to Kennedy Krieger for my 10 o’clock appointment, and – as promised – all of my most bizarre health issues were competently addressed by Dr. Recio and his staff of nurses and phlebotomists. We left the Botox appointment with plenty of time to grab a turkey burger from a food truck outside before heading one block south for my MRI. An hour and ½ later, feeling somewhat disoriented from my 90 minutes inside a cacophonous tomb having my brain and spine imaged, we loaded into my car and headed north on 83 out of the city. According to my Waze app, we would be back in Ithaca by 8:30 p.m.

Unfortunately, no one warned us that we were driving directly into a spontaneous snowstorm. Neither did anyone tell us that what Shelly had described on Sunday morning as “a scratchy throat” was – by Monday afternoon – Covid. Nevertheless, the drive went swimmingly until – maybe 4 ½ hours into our trip (a mere hour and ½ away from home) – it began snow-pouring monstrous, fluffy wet flakes of snow that almost immediately coated the road beneath us with a thick layer of icy slush. Shortly thereafter we discovered that my “all weather” tires were essentially bald and provided zero traction amidst said icy slush. It was obvious to everyone in the van (with the exception of Gem) that we were essentially skating along the highway at the breakneck speed of 13 miles an hour. As the tractor-trailers sped by us in the fast lane, completely unfazed by the spontaneous blizzard, my Honda pilot would fishtail in their wake. No one said anything other than, “we have to get off of this road” while simultaneously praying that we would find an exit without either a hairpin turn or a downhill ramp. Even with my car in four-wheel-drive it was obvious that Mary had little more than luck keeping us on the road, and there were zero opportunities to safely pull off. We debated, would it be safer to pull over on a straight a way with a small amount of shoulder, or somewhere with a larger shoulder but adjacent to a cliff or a deep ditch; if we got rear-ended by another car driving 60 miles an hour where should we be facing before being catapulted to our inevitable destruction? At long last we approached an exit to Route 17 and had space to pull over that would neither send us careening into a rock wall or a gully, and Mary put the car in park while I called 911.

 

Thankfully it was a quiet night in Binghamton and the 911 dispatcher sent us a police escort to get us safely to the exit. We were eventually trailed by a boyish state trooper with his emergency lights on, and with him behind us we were finally confident that no impatient 18-wheeler would inadvertently throw us off the road. We crawled into Binghamton by 11 PM (2 ½ hours after our Waze predicted ETA in Ithaca) and unloaded into a Doubletree hotel where three of us ate a highly dissatisfying meal from Burger King and tried to unwind.

Shelly squeezed Gem into the front of the car while we waited on the side of the highway. We feared that if my car was hit from behind Gem might be pegged between the side of my car and by 400 pound wheelchair.


 

Although incredibly grateful that we lived through the harrowing 15 miles in a blizzard, Shelly was increasingly certain that her “scratchy throat” was more than a cold and her flushed face suggested more than just paranoia. I, trying to convince myself and Shelly, attempted to assuage her fear by blaming her symptoms on a bad night’s sleep and a stressful drive; how could she possibly have Covid? In the meantime, Mary helped her unpack the obnoxious quantity of supplies and medications that I require for a mere 12 hour stay in a hotel, and we all went to bed as quickly as possible. By the following morning, after Shelly had experienced a restless night accompanied by chills and excessive sweating, she somehow managed to keep her concerns to herself and helped Mary pack us back up while getting me through my morning routine as expeditiously as possible. We returned to Ithaca on shockingly snow-free roads, and within a few hours Shelly’s sinking health-related suspicions were confirmed: she tested positive for Covid. Mary, after having just escaped contracting her husband’s bout with Covid, hoped she was somehow immune and came into work with me for the next two days. I immediately scheduled a Covid test that would correspond with my fourth day after (a prolonged) exposure and warned all of my college caregivers to wear extra PPE when they worked with me. By the day of my scheduled test, Mary too was showing symptoms of impending sickness and she ended up getting tested the same afternoon as I did. The following day she took the morning off and we both anxiously awaited our results: she was positive, I was negative.

It has now been over a week since we all returned; Mary and Shelly are mostly recovered and my second PCR test just confirmed that I am still negative. I guess when one’s immune system is strong enough to destroy one’s nervous system, it can simultaneously fight off Covid? Especially when coupled with a relatively recent vaccine booster and my foolproof immune-activating acupuncture supplements which apparently fend off more than just your average cold. For the first time in my life I’m somewhat relieved to be a bit of a medical mystery. But mostly I’m relieved to have caregivers that are willing to battle the weather, the pandemic and the sundry hurdles that these quarterly Baltimore trips notoriously entail.

Sunday, November 28, 2021

Introducing Gem

 

Shortly after posting my last blog, I spent the next month doubled down on service dog applications. I submitted initial applications to 10 different service dog organizations throughout the country and received official follow-up applications from only two programs: ACTS (Assistant Canine Training Services) in North Conway, New Hampshire and K9s for Mobility in Cheyenne, Wyoming. I filled out each extensive application, detailing the extent of my disability, my familiarity with dog ownership and the types of tasks a potential service dog might complete for me. I solicited references from friends who could attest to my ability to care for a dog despite my physical limitations and harassed my neurologist to complete a rather lengthy questionnaire explaining the specifics of my disability. I was then asked to compile videos showing the layout of both the inside and outside of my house. To my surprise, within a week I was offered a Zoom interview with both programs. Neither ACTS nor K9s for Mobility mentioned anything specific about the timeline I could anticipate, but I looked forward to both interviews with a renewed sense of hope. At the very least, the amount of time and concentration I spent completing the applications got my mind off the almost suffocating loneliness I felt without Izzy by my side.

 

When comparing the two programs, I ultimately felt more drawn towards ACTS because of its (relative) proximity to Ithaca (an eight-hour drive as opposed to a flight requiring layovers etc.), and because of the warmth and commitment I felt when meeting Nan Ippolito, the director of client services and Mary Russell, the director of graduate services during the interview. However, two weeks later I interviewed via Zoom with K9s for Mobility in Cheyenne and, catching me completely off guard, they invited me to fly out there in October to meet potential “matches.” Wanting to be completely transparent with both programs, I emailed ACTS immediately and told them I was invited to Cheyenne to meet potential service dogs in October, but that I first wanted to inquire about what type of wait-time I might expect through their program. To my complete surprise, Nan asked me if I could possibly delay booking travel by a week because they planned to “evaluate” one of their current dogs on August 31. Contingent upon the positive outcome of that evaluation, they were planning to offer her to me. But, if she failed her evaluation I could expect a 1 to 2 year wait for another potential match. I immediately channeled my cosmic energy and prayers to all the things: Jesus, the universe and Izzy’s indestructible spirit. I do not know what role dead dogs play in facilitating future dog ownership for the people they leave behind (especially when said dog actively despised most of her fellow four-legged friends), but I desperately wanted Izzy’s help in finding her successor. So I asked all powers that be – Izzy included – to guide this unnamed dog to pass her evaluation if and only if she would be a perfect fit for me and my unconventional lifestyle.

 

I must have refreshed my Gmail inbox 327 times on the afternoon of August 31, but I did not hear a word from Nan and started to assume the worst. I reassured myself that everything would be okay, I didn’t feel “ready” for a new dog anyway. The next morning, I stumbled through my duties with Mary and tried to focus on other things. It wasn’t until my post-stander bathroom routine that I received a phone call from an unknown number and answered eagerly, hoping it would not be another reminder about my car’s extended warranty. It wasn’t. It was Nan. I felt my heart leap into my throat as soon as I heard her voice. When her opening sentence was, “Kate, I have great news…” I started crying before she even finished her sentence. She must have been confused by my silence, but my words were unable to fight their way through the heart-shaped lump in my throat. I look imploringly at Mary as if to say, say something for me, I can’t talk, but Mary was crying as well. Nan went on to explain that the dog they were offering me was a black lab named Gem, and she would be mine by Thanksgiving if I could coordinate plans to make it work.

 

After what could only be perceived as an awkward silence, I was finally able to articulate some sort of affirmative response in between halted breathing and inaudible sobs and attempted to assure Nan that these were happy tears. Happy tears that I didn’t know I was even able to produce. Before Izzy died in June, it had been nine years since I could remember producing actual tears out of my eyeballs. In fact, I communicated concern about this to my doctor a few years ago, wondering if perhaps MS had stolen my ability to emote properly, or if my years of Lexapro consumption had finally done irreparable damage to my limbic system preventing me from physically producing tears. Whatever the cause of my relatively recent emotionless existence, my last conscious memory of crying was on July 1, 2012, when I left Baltimore to move home to Ithaca. However, when Izzy died, it was as though she bequeathed me the gift of tears once again; losing her was immensely painful, but for the first time in nine years the pain had somewhere to go rather than inside my body, it streamed down my cheeks. When Nan told me about Gem that afternoon it was the first time that I realized I also was capable of tears of joy.

 

Throughout this process I have had numerous conversations with Nan where I have doubted my worthiness of an actual service dog. Dogs raised through ACTS have more skills and knowledge than many middle school students I have taught, and considering the fact that I almost always have a caregiver with me, would I be a waste of a service dog’s abilities? Do the people in my life negate my need for a service dog? The self-doubt continued to spiral: am I too disabled for a service dog? Would the skills of a service dog be squandered in my household where so many of my needs require the dexterity of fingers? Are there so many caregivers on my caregiving team that consistency would be impossible? Am I destined to bore or – worse yet – ruin an actual service dog? When I expressed these fears to Nan prior to my interview, she was so reassuring – as the layers of smothering insecurity piled on, she assured me that I was a perfect candidate for a dog of this caliber; that I deserved a service dog. So I moved forward, committed myself to what would inevitably be a long wait for a dog, and attempted to intercept my insecurities before they rendered me dog-less forever.

 

More amazingly, while ACTS requires two weeks of “team training” once clients are matched with their dog, they were willing to waive the two-week requirement for me, understanding that it would be a practical impossibility for me to tear one of my caregivers away from their own families for a 14-day stay in New Hampshire. Nan asked me if I could commit to three days of training and – before even checking with Mary or Shelly – I immediately said yes.

 

So between September 1 when I got the good news from Nan, and November 19 when I was able to reserve an accessible hotel room for two caregivers, myself and my mom, I shared the good news with everyone and started trying to imagine my life with an animal who wasn’t Izzy. When I told my college students, it’s possible they were almost as excited as I was. In fact, two of my sixth year PT students offered to take me to North Conway, New Hampshire during their fall break, October 13-16, so I was able to meet Gem even before our scheduled mini-training in November.


Fast-forward to today, the Sunday after Thanksgiving. As I write this, I have a Shih Tzu on my lap and a beautiful black lab curled up on the floor next to my wheelchair. She is, as I suspected, smarter than a handful of middle school students I have taught and inexplicably loyal to a person who has neither trained her nor pet her. She has been “mine” for barely 48 hours and she has already picked my phone up off the floor and placed it on my lap after an inconvenient spasm sent it flying upside down and under the table, she has learned to “tug” the pocket door in my room open, and these are only two things that she has “learned” in a brand-new environment with people she hasn’t even known for a week. She stays in her “place” when we are eating, does not rudely beg for human food and loves to show off her ability to “go find help” when asked. My God brother’s nine-year-old daughter (with some minor assistance from me) taught her how to “tug open” the pocket door to my room, and our next task is to conquer tugging the blanket off of me at night when I am hot. I anticipate there will be growing pains ahead of us; she will test me and I might fail. I also know there is ample room inside my brain for continued self-doubt and ruminations over ways I will potentially fail as a service dog owner. But I am absolutely certain that whatever difficulties befall us in the distant or not so distant future, I will not face them alone. The team at ACTS will never be more than a phone call away, and I am looking forward to regular Zoom meetings in order to check in on both Gem’s progress and my own.

 

Perhaps most importantly, when I let her kiss my face, even when I am not disseminating pieces of cheese from my mouth as a reward, she squints her eyes and lays her ears back against her head while her tail wags and her hind end wiggles in a manner eerily similar to Izzy. When I invite her onto my bed before I go to sleep, she curls up adjacent to my pillow and rests her chin on my chest, and when I move from room to room during my four-hour morning routine, she follows at a distance before laying down nearby as if to supervise. She loves to pick things up off the floor for me, and last night even picked my mom’s phone off the floor next to the couch and placed it on her stomach as if to say, I’m willing to help you too, you know. And unbelievably, somehow, she seems to know that I am her person – at least for now. And equally surprising, I have found an almost endless capacity to love a dog with the same fervor that was once reserved for Izzy. Gem is an amazing dog, and I can’t help but believe there was a certain amount of providence involved in the two of us finding each other. Too many things just don’t make practical sense without a pinch of divinity mixed into the equation. So thank you, to all the things I implored while Gem was passing her evaluation with flying colors: Jesus and the universe and even the spirit of my precious Izzy beast. But thank you most of all to the people involved in making me cry tears of actual gratitude and joy. Thank you to the selfless puppy raisers and trainers who spent the last two years nourishing, loving and training Gem, to everyone who works for ACTS, to everyone who supported me throughout the painstaking application process, and to everyone who helped me make the arduous drive to New Hampshire in order to make this dog a part of my life. I hope she will be with me for a long, long time to come.

If anyone is able to make a donation to this incredible organization for Giving Tuesday, here is the link. I can promise your money is going to a fantastic cause.

https://www.paypal.com/donate/?hosted_button_id=WFH4LZNL8M35G 



Sunday, June 27, 2021

On Dog Motherhood


Two things in my life keep me sane: gratitude and perspective. I must say though, they do not come easily – especially when browsing social media or lamenting the exhaustive list of things I wish I could still do. Being grateful and keeping perspective require consciousness and effort that I frequently lack, but – once summoned – also enable me to be mostly happier than sad. Mostly.

 

That said, I am having a harder time than I care to admit moving forward without my dog. She wasn’t directly responsible for it, but she played a major role in helping me snooze the incessant clanging of my irrelevant biological clock in my early 30s – mainly by reminding me how insanely impractical motherhood would have been for me, and also by keeping me distracted in perpetuity by antics that will forever be unprecedented. Izzy was a daily source of joy amidst a life that is – to my chagrin – overwhelmingly characterized by frustration. She was my daily activity partner and reason to be outside – even during the winter. She was filled with shenanigans that were only barely eclipsed by her fierce loyalty to me. On a particularly dark day during the first half of her life, I called my brother and asked him if he would take Izzy if something happened to me; he – apparently understanding what I was alluding to – said no. He refused to raise a dog whose very existence reminded him of the saddest thing that had ever happened to him. I’m sure that was not exclusively the reason I opted for therapy rather than the alternative, but I cannot overstate the importance of having a responsibility to something outside of myself for the last 14 years. I know with absolute certainty that there will never be another dog like Izzy in my life, ever. I also know though that she cannot be the only dog I have in my adult life.

 

Which leads me to another sticking point: my reality-based fear that no other dog will ever know me as its mom. For the first five years of is Izzy’s life I fed her, trained her, pet her, brushed her, attempted to cut her nails and walked her (or otherwise exercised her) every single day. When I impulsively picked her up at the Baltimore SPCA in 2007, she rode back to my apartment on my lap as I precariously navigated 83 S. using hand controls as she crawled up my chest with razor-sharp puppy nails. Thankfully, because of those first five years together, she knew – no matter what I could or could not do for the last 9+ years of her life – that I was her person.

 

It is that feeling, the feeling of being seen, occasionally willfully ignored, unconditionally loved and simultaneously taken advantage of that made Izzy feel like my kid. I’m not delusional, I know that she was just a dog and I will never truly know the depths of love that a mother feels for her child. And part of me actually is relieved that I will never understand that type of love, because with it comes the possibility of hurt, frustration, and – for some moms – heartbreaking loss. But with Izzy, even when she was getting kicked out of dog parks for attempting to eat her furry friends, there was one thing that I never questioned, not even once: her love.

 

A few weeks ago, as Izzy lay next to me on the floor, I decided to investigate the possibility of adopting a service dog through Canine Companions. I have a rather extensive list of needs (as one might surmise) and some of those needs could be addressed by a well-trained and loyal dog. I completed a pre-application online in order to receive an actual application for said service dog, but the website warned that they are inundated with requests and it would take 4 to 6 weeks to receive the application. Further, once approved for said service dog, the waiting list to be paired with a dog can take as long as 20 months and culminates with a two-week long stay in Long Island in order to be appropriately matched and trained together. Understandably, neither my mom nor caregivers seem super eager about the prospect of a mandatory two weeks in Long Island to complete the adoption process, which leads me – indirectly – to this blog post.

 

How can I avoid spending the next two years of my life dogless?

 

And how can I ensure – if I do not adopt a legitimate service dog – that my next dog will know I am his or her person? In my unrealistic dreams, Izzy is running wild in doggy heaven while finding her four-legged successor that she will magically direct into my life. Maybe this dog will arrive at the Tompkins County SPCA while Shelly is volunteering; maybe a perfect Kate-companion will end up surrendered in the exam room of one of my veterinarian friends; maybe he or she will magically wander into my backyard. More practically however, I know that – just as I must actively choose gratitude and perspective on a daily basis – finding my next dog will require some type of conscious work and patience that I’m not entirely sure I possess. Writing this post and opening myself to the possibility of a future that is absent of Izzy, but not necessarily absent of joy, is maybe just a small part of that work.

 

Friday, June 11, 2021

On Saying Goodbye…


During my teaching days in Baltimore, I managed to fit more into one day than I can even imagine squeezing into a week at this point. I usually stayed at school until sometime between four and five, and then drove home to my apartment to grab my dog before heading to the dog park and eventually the gym. The drive between my apartment and the park could take anywhere from 10 to 30 minutes depending on traffic, and as soon as we turned onto Boston St., Izzy immediately started whining in anticipation. On a particularly anxious day she actually peed in the passenger seat of my car when we were still five minutes away; that's how much she loved the dog park. On one afternoon when I returned to my apartment, it took me a minute to find my keys and unlock the door and I heard Izzy on the other side, repeatedly whacking her tail against the wall in anticipation of my arrival. When I finally opened the door, she charged me with the force of a wild beast, leaping from the doorway of my apartment directly onto my lap with all four of her feet. Unfortunately my wheelchair, already weighed down by the backpack of school supplies hooked over its handles, immediately flipped over, landing the chair, myself and Izzy upside down on the floor of the hallway in front of my door. Undeterred, Izzy placed one paw on each of my shoulders and licked my entire face until I was crying for mercy (and, embarrassingly, one of my neighbors came out to rescue me).

I'm telling this story right now, because Thursday was Izzy's last day with me. It was a spur of the moment decision made easier when my friend Annette, who just happens to be an end-of-life veterinarian, came over and told me her stomach looked potentially filled with fluid and her heart arrhythmia was more pronounced than usual. She had already firmly rejected regular dog food for more than a week in favor of homemade beef stew (thanks to my mom), baked cod (also thanks to my mom) and over easy eggs (thanks to Mary). Additionally, she was living with lymphoma, hypertension, a heart arrhythmia, hyperparathyroidism and splenic masses since the end of January. With a lump in my throat I knew, rationally, I was prolonging the Inevitable and I elected to avoid any further discomfort to the dog who literally brought joy to my life every single day for the past 14+ years. After relocating to the couch, and putting Izzy's sedated head on my lap, we put her to sleep. Forever.

I'm unclear on where I stand when it comes to the afterlife these days, but I have to believe I will see her again. And I can only hope that when we meet, wherever it is, she will be just as excited as she was when I attempted to wheel through my door 10 years ago.

Sunday, February 28, 2021

On Podcasts

 

Historically I am a bad sleeper. I can date my first bout of insomnia back to the age of seven when, for whatever reason, I was plagued with the anxiety that accompanies sleeplessness. Make no mistake, I was seven years old, there was absolutely nothing in my life to be anxious about, but it was dark, and I was alone and everyone else was sleeping and I was supposed to be sleeping, and oh my God why couldn’t I sleep? Reading became an obsessive antidote to this anxiousness from that point forward, and – even throughout high school – I would invariably fall asleep with the adjacent reading lamp still on and my face plastered against the pages of a book. My sleep-related anxiety even prohibited me from reaching over to turn the light switch off, as the darkness indicated time to sleep, and despite my heavy eyelids and my barely conscious ability to comprehend the written word, the movement of my hand towards the lamp would immediately catalyze a racing heart. I used tiny reading lamps throughout college, so my roommates could deal with the light, and years later, once my disease had rendered my fingers unable to turn the pages of a book, I could still navigate a Kindle – backlit appropriately for reading in the dark, and easy enough to resume if I fell asleep and woke myself back up. For a few underappreciated years, the Kindle was the perfect solution: I could read without concerns about the anxiety-provoking light switch. Unfortunately, it too was only a temporary fix as multiple sclerosis soon came for even my left thumb, leaving me alone in the dark with nothing but my thoughts. But my thoughts were darker than my bedroom, and I could not sleep without something, anything, to occupy my mind other than my own fears. At first, audiobooks seemed a natural solution, but I frequently fell asleep in the middle of a chapter only to wake up hours later with the book over and no memory of where exactly I had lost consciousness. Eventually, I was gifted an Amazon Echo and was introduced to a brand-new anxiety antidote: podcasts. So no, I no longer sleep with the light on, but I do frequently find myself snoring about 15 minutes into an episode of This American Life, the Moth or – my personal favorite – Terrible, Thanks for Asking (TTFA).

 

A recent episode motivated me to reach out to the host, Nora McInerney, and my friend Lena convinced me to publish my email in a blog. So here it is:

 

Hi Nora!

I am an avid TTFA listener for a few reasons: 1. I am occasionally predisposed to self-pity (which I abhor) and I appreciate that your show offers much-needed perspective. 2. I believe deeply in the philosophy that two things can be true at the same time – your life can be hard but simultaneously joyful, painful but simultaneously rich, frustrating but retrospectively hilarious. In short, I was diagnosed with multiple sclerosis in 1997. I was 19 and a sophomore in college where I had (ironically) been recruited to run track. Although my original plan was to "beat" my diagnosis, deal with the temporary setback and get back to running, my immune/nervous system had other plans. I was never able to run again yet did – despite being rather gangly – attempt to throw the shotput in order to stay involved with the team. Three years later I graduated with my BA in history and got a job through TFA (teach for America, not to be confused with Thanks for Asking) teaching middle school in Baltimore Maryland. My disease had progressed significantly at that point, but I was still able to walk – albeit with a noticeable limp – and I kept major progression at bay by taking steroids every four months (great for the skin by the way). I taught for 12 years (although teaching middle school nearly killed me and after three years I got a job teaching high school), but by April 2012 I was using a power wheelchair and could no longer use either of my arms reliably and was paying (out-of-pocket) for live in caregivers. When I was no longer able to sign a hall pass, I finally retired. Leaving teaching was, and still is, the hardest loss I ever suffered. It obviously sucks not being able to walk or use my arms anymore, but at that point teaching had become my identity – even more than running had been in college.

 

All this to say, your "Who Cares part 3" episode really resonated with me. When I finally left teaching I was paying more for caregiving than I was making as a teacher (with tenure and a Masters from Hopkins). Luckily I had a number of supportive friends that encouraged me to start fundraising – probably much like you had to do when you finally accepted that your husband needed part-time care. Asking my friends, most of whom were also teachers, to donate money to me was a hard pill to swallow, but with endless amounts of help from a support system that I'm still not entirely convinced I deserve, I have held an annual caregiving fundraiser every year since 2011. Even now that I retired from teaching and live in my childhood home with my mom (my dad also has MS and lives in a nursing home, something he also pays for out-of-pocket), the fundraisers have continued (although I did have to skip the in-person event this past year thanks to Covid). If it were not for the generosity of my friends, family and community (I currently live in Ithaca New York), I have no idea how I would survive. I spend – on average – between $500 and $800 a week for an annual total that surpasses my SSDI + my teaching pension. And yet because I receive that annual income, I am unable to qualify for any type of public assistance. It is a double-edged sword, and fortunately (?) one that the general population knows nothing about.

 

So thank you. Thank you for putting that valuable information out into the world and thank you for understanding and validating not only people’s pain, but also their resilience. I'd love a chance to share my story with you in more detail if you are interested, including but not limited to my somewhat recent attempt at a relationship which ended five years later in an unimaginably painful way.

 

Also, without working hands, this email is only possible thanks to my Dragon dictation software. It gives me a voice and makes navigating my computer possible. It also occasionally makes me lose my mind and want to throw my computer out the window. But that is why I see a therapist!

 

With gratitude, Kate Hooks

 

 

 


Sunday, May 24, 2020

On Cancer

In a slightly less humorous turn of events, Izzy was diagnosed with presumptive cancer at her last annual visit back in September. I brought her to the vet with two concerns: alarming halitosis, and a strange growth on her right hind paw. I left the vet with two additional concerns: a chipped canine tooth (thanks to last spring’s thunderstorm fiasco) and a rather significant amount of weight loss. Her vet and I discussed the pros and cons of getting a 12-year-old dog's teeth cleaned, and we decided to run a “full senior screening” blood panel first and wait for the results before worrying about her teeth.

A week later the blood results were in which showed a small elevation in calcium. Her vet emphasized that the elevation was very minimal, but she asked me to bring Izzy back in for a recheck and a brief follow-up exam. Mary and I brought her back after school the next day, and the two of us sat in the waiting room while the technician brought Izzy back for the exam. 10 minutes later, the same technician asked us to go back to an exam room to talk to the vet in person. I’ve spent enough time in doctor’s offices at this point to know that “the doctor wants to talk to you” is never a harbinger of something good, and I said as much to Mary as we followed the technician to the exam room. After another brief wait, Izzy’s vet came into the room and closed the door. She explained that she had rechecked her blood and that the original results were accurate, her calcium was elevated. And since elevated calcium can indicate one of two types of cancer, she followed up the blood work with a rectal exam and discovered a “firm nodule the size of a pencil eraser in her left anal gland.” She continued to explain that it was not conclusively cancer until it was biopsied, but that in order to biopsy the growth it must first be removed.

Let me be crystal clear right now in case it’s not obvious: my dog is the only constant source of joy in my life. I can think of exactly 3 days out of the last 13 years where I second-guessed my decision to rescue her from the Falls Road SPCA in 2007. Granted those were really bad days when, according to my friend Shelly, Izzy deserved to end up in a freezer (one of those days is detailed in another blog, to read it click here). But other than that, she has been the most consistently loyal, entertaining, and adoring companion I could ever ask for. Which explains why, when her vet mentioned cancer, my face started to burn while the air seemed to disappear around me. I felt like a fish flopping about helplessly on the shore after the tsunami receded. Mary’s eyes bore into me, almost willing me to cry, but then I heard myself speak and I sounded calm and rational and far away: “She is almost 13 years old, do you think surgery is the best option at this point? Her overall quality of life is paramount to me.” She assured me that yes, given Izzy’s otherwise good health, she’d definitely recommend the surgery. She told me to schedule an appointment with the oncologist on my way out and we said goodbye.

Izzy pre-ultrasound waiting for her morning treat
(she needed to fast and did not understand)
I’ve been blessedly lucky that none of my immediate human family members has dealt with cancer at this point, so I can only imagine how exasperating the healthcare timeline must be for humans. From the time I heard the word cancer until Izzy’s actual surgery, we waited a mere 2 ½ months, but it felt like 2 ½ years. During that time period, she had an appointment with her oncologist, an appointment in Syracuse for an ultrasound to check for metastasis, and an appointment with the surgeon.

Mercifully, per ultrasound results, there was no obvious evidence of metastasis in her lymph nodes or other vital organs and her surgery was scheduled for early November. In the meantime, my friends and I had planned a 10-day trip to California, and although I was hesitant to leave my dog for that long, there was no rational reason to cancel our vacation plans. I hoped a vacation would help kill the time, and one of my travel companions for the trip was my favorite compassionate-yet-logical vet friend, Ellen. She not only understood my concerns, but also was leaving behind her own beloved cat with cancer. So I tried to suppress my anxiety and enjoy myself in California. It was a trip I had been planning for over a year and Ellen and I were meeting up with my sister (from another mister), Sonya, and several of my other favorite people in the world on the West Coast. Still, I could not help missing my four-legged sleeping companion with vile breath.

Ellen, Kristen, Matthew, and my sister, Sonya
While in California I was surrounded by so much beauty – both the environmental and human types. And I was simultaneously distracted by so many wheelchair malfunctions (for more details click here) that I was able to keep my mind from obsessively worrying. When we returned from the West Coast, I had less than two weeks left to wait before the surgery. The morning my mom brought her in for the surgery at Colonial Veterinary Hospital, I made sure to let Izzy lick my face extra-vigorously and said about 300 silent prayers on her behalf. The surgery was not until 5 PM, and the surgeon said he would call me afterwards. If everything went according to plan, we could pick her up within 48 hours. In the meantime, I went to school for the afternoon and tried to stay distracted by editing college application essays and helping students identify central themes in the book Things Fall Apart. I prayed that Izzy’s fate would turn out better than Okonkwo’s.

Day 3 in the hospital
My phone did not ring until close to 7 PM, but it was good news: Izzy was alive and recovering, and the surgeon thought he got good margins. Per my request, in addition to removing the tumor, he had also removed the unsightly old lady wart that protruded from Izzy’s left side. He told me to call the clinic in the morning to check on her and he hoped she would be ready to come home by the following day. As it turned out, she was not. Nor was she ready to come home the next day, or the day after that, or the day after that. Post-surgery, Izzy was stricken with the most dreaded of possible side effects: fecal incontinence. Two words that should never be used in the same sentence. I called Colonial twice a day for six days, and twice a day I heard about her lovely disposition and ravenous appetite, before hearing about her uncontrollable diarrhea. Given the fact that Colonial is staffed 24/7, and that technicians were able to bathe her and sterilize her incisions after every “accident,” I did not pressure my mom to go pick her up; sometimes I know my limits. Fecal incontinence does not fit into the schedule at the Hooks’ household, especially with two other dogs and only one able-bodied human.

As the days added up, I was secretly starting to worry that fecal incontinence would continue indefinitely, and I would never get my dog back. When I vocalized my concerns to the surgeon, he seemed genuinely shocked that her recovery was so fraught with difficulty. I thought back to my original conversation with the oncologist in late September about Izzy’s quality of life being paramount, and I started questioning my decision. Then I flashed back to my appointment with the surgeon in October; he did warn of potential fecal incontinence, but said it was extremely rare – especially with such a small mass in such an otherwise healthy dog. As two days turned into three days and three into four, I continued calling Colonial until even the technicians recognized my voice. They graciously invited me to come visit her in the hospital, but it seemed too cruel – she would think I was there to bring her home and then I’d turn around and leave her again. So, I continued to wait, and after six days I finally got some encouraging news during my morning phone call: Izzy still had diarrhea, but she had no accidents overnight. I consulted with my mom, and we agreed that – if Izzy continued with no accidents throughout the day – she could come home that evening.

Thankfully, Shelly – who might be the only person who loves Izzy almost as much as I do – agreed to accompany my mom and me to pick her up. It was later in the evening when we arrived at Colonial, and the waiting room was empty. The three of us headed back to an exam room to wait for a technician to retrieve Izzy and give us the (extensive) discharge instructions. When the door finally opened, we were presented with a very excited, very skinny Izzy with a cone on her head. The second she saw us she started wiggling and squinting her eyes and wagging her tail, and she left a trail of pudding poop in her wake. The technician did not seem to notice, but I saw my mom’s eyes start to bug out of her head and I had a sinking feeling that we might be bringing Izzy home too soon. But at that point it was too late, the damage was done, Izzy already knew that she was coming home. The discharge instructions began: first there was anti-septic wash for the incision site, which needed to be thoroughly cleaned at least twice a day, and then there were antibiotics, pain meds, anti-diarrheal meds, a probiotic powder and prescription dog food. The instructions continued, and I could see my mom’s stress level elevate with each directive: one medication was administered every six hours as needed, the other was every twelve, the probiotic powder could be split between both meals or put in one, but it could not be given at the same time as the antibiotic, and we needed to make sure that Izzy was always on a leash even if she just went into the back pen to pee, and under no circumstances could she jump on furniture until the sutures were removed.

When the technician finally stopped talking and left the room (to get another medication incidentally), Shelly and I tried to assuage my mom’s concerns. I tried to reassure her that I understood all of the directions and that everything was written down in the discharge instructions. Meanwhile I could not reconcile the Izzy in front of me with the Izzy from seven days ago – she looked like she had lost about 10 pounds, her rear end was pink and inflamed, her tail was shaved so she looked like a rat and she had anxiously nibbled the towels in her crate so aggressively that the area between her lips and her nostrils was red and raw. She reminded me of a kindergartner with Kool-Aid all over her face. Nonetheless, I tried to convince my mom (and myself) that we could figure everything out at home and that Izzy’s sphincter function would soon return to normal. I paid the bill, and the four of us headed home.

Shelly sat in the back of the van and held onto Izzy to keep her from jumping on the seat, and less than five minutes into our ride home she had two accidents. I was relieved that the floor of my van is not carpeted, but that fact did not change what I saw as a bad omen for the rest of the evening. Incidentally, while Izzy had not had an accident in the house or car for over 12 years, she did not seem particularly ashamed of herself. My mom pulled the car into my driveway and opened the garage door, and the second we let Izzy out of the back of my car, she dragged Shelly straight to the shelf that holds the tennis balls and started prancing in place and looking up at the box of balls and looking at us, up at the balls and back at us, back and forth. Something about that moment, even though she had just pooped in my car, reassured me that she was going to be fine. She might be emaciated with fecal incontinence, but she still wanted to play ball in the dark. Once in the house and off the leash, she immediately trotted to the back door and asked to be let out. That was also a good sign, I thought, even though she left a small poop splooch or two along the way. Shelly came to our assistance and followed behind Izzy with the Clorox wipes, and then helped us problem solve the next inevitable obstacle: where should Izzy sleep? Where to put a dog with a leaky sphincter?

A discontent Izzy in my bathroom
Shelly considered lining her crate with trashbags or towels, but quickly abandoned that idea once we realized she could barely fit in the crate while wearing the cone of shame. Ultimately, we decided to cover her bed with towels and put it in the bathroom adjacent to my bedroom. I figured after six nights in a crate next to other hospitalized dogs, the bathroom floor on her plush bed would be luxurious. I figured wrong. After Shelly left and I was settled in bed for the night, and after Izzy had gone out for the last time (and had her incisions thoroughly cleaned by my mom), my mom closed the door to the bathroom and attempted to retire to her own room for the night. Izzy’s noises elevated slowly, starting as occasional pathetic sounding yelps, but ramping up to a full doggy temper tantrum within minutes. I could hear her banging up against the door with the plastic cone as she graduated from pathetic yelps to high-pitched, almost piercing barks. I heard my mom’s footsteps through the house, and she opened the door to the bathroom and moved Izzy to the other side of the house in the laundry room. Once again, it took only a matter of moments for Izzy to successfully articulate her sense of doggy injustice. Panting dramatically, she was eventually returned to my room where she stood at the foot of my bed accompanied by my increasingly displeased mother.


Temper tantrum, please notice the Kool-Aid lips 

“What do you suggest we do with her? It is after midnight, I’m not doing this all night.”

Before she even finished the sentence, Izzy jumped onto my bed. She immediately curled up with her cone on my legs, and sort of looked up at my mom as if to say: “Took you long enough to figure that one out.” Defeated, my mom shoved an old blanket underneath her, turned off the light and left my room in disgust.


The rest of the night, or at least what was left of it, followed suit – Izzy needed to go out once in the middle of the night but mostly made it through the next eight hours without incident. It was a stressful first 48 hours home after an already stressful 2 ½ months, but I am happy to report that over the next two weeks, her sutures remained intact, her diarrhea subsided, her sphincter control returned and my mom expertly followed her extensive medication protocol – including frequent antiseptic cleansing to affected areas. Most importantly, six months post-surgery, her quality of life seems unchanged; she still tramples over my mom’s shih tzus daily while she races to get a morning treat, she still begs to be fed as if she is on the brink of starvation, and she still wants to play ball – every single day, no matter the weather. The older she gets, the less obedient she seems, but the only thing that matters to me is that as of today, she is cancer free, and she remains full of the shenanigans which make her both the best and worst dog of all time. 
"Porch ball" with Shelly

Sunday, May 10, 2020

On Traveling with a Dog

This is one of my all-time favorite Izzy stories.

Almost 2 years after leaving Baltimore, I convinced Shelly, another member of my Ithaca caregiving crew, to take me on a mini break down there to visit friends. My friend Peter lived outside of Baltimore and invited us to stay in his accessible mother-in-law suite, and he made the deal even sweeter when he told me I could bring Izzy. Predictably, Shelly, Izzy and I left Ithaca two hours after we intended to, and I quickly realized we were not going to arrive at our intended destination until after 10 o’clock at night. Under normal, even perhaps highly trafficked circumstances, the drive from my house in Ithaca to Baltimore city is 5 – 5 ½ hours max. With Shelly driving, however, the same exact drive (even without traffic) took almost seven. I blame it on her slightly abnormal obsession with McDonald’s unsweetened iced tea which necessitates we stop almost hourly to pee. At 9 o’clock, still north of Baltimore and more than an hour away from Peter’s, Shelly and I aborted the mission and elected to find a hotel room for the night. The only problem was my beast.


Izzy, Shelly, and me on the Inner Harbor

Luckily for us we had her therapy vest in the car, and it would only be for one night. We pulled into a Hampton Inn a mere 15 minutes north of Baltimore city, got an accessible room with a roll in shower and the three of us retired for the night. Izzy was a picture of perfection, she ate her dinner in the room, went out for a nice walk before bed, did not bark or whine when strangers walked by and snuggled up with me in the queen-sized bed all night. The next day we coordinated plans to meet my friend Lena for a trip to Whole Foods and a nostalgic walk along the waterfront in Baltimore. As we walked/wheeled, she convinced us to find a hotel within walking distance of downtown rather than trek to Peter’s house in Silver Spring. Considering everything Shelly and I planned to do was downtown – including our later dinner plans – we were easily convinced. After the previous days’ interminable drive from Ithaca, another 45 minutes seemed daunting. Especially given Shelly’s obsession with iced tea, and the traffic on I-95. I called Peter and told him we’d see him at dinner and used the (presumably now obsolete) Hotels Tonight app to find an inexpensive hotel room in the Inner Harbor. 


We told Lena we’d see her later and headed a few blocks away to the hotel. Izzy, adorned in her therapy vest, got settled into yet another hotel room and Shelly and I did our best to make her feel comfortable before we left. She ate her dinner, we left her water bowl in plain view, and she had access to two queen size beds of her choice. Relatively certain she was tired after our walk anyway, Shelly and I headed out to meet my friends for dinner. Our reservations were at 6 o’clock at a restaurant about 10 blocks away from the hotel. As Shelly and I left the lobby I said to the concierge, “I’ve never left my therapy dog behind in a hotel room, and sometimes she gets anxious without me, so please call my number if there are any problems.”

Shelly and I got into the van and headed to City CafĂ©. The traffic was horrendous. 20 minutes after leaving the hotel, we’d barely made it five blocks. And then the inevitable: my phone rang, it was an unknown Baltimore number. Shit. Without functioning hands, I was no help, and Shelly had to reach over and grab my phone in order to answer it while navigating rush-hour traffic. The man on the other end of the phone sounded frazzled: “Ma’am, I’m sorry to tell you but it seems your therapy dog is causing problems on the eighth floor. There have been some complaints about the noise coming from your room. Can you please come back?” Naturally we were on a one-way street going north, so by the time we’d turned around and fought through thick traffic heading back to the hotel, we were already late for our intended dinner reservations. I stayed in the car while Shelly ran in to grab the beast. Moments later she was back in the car with Izzy in tow.

Me: Where is her leash?
Shelly: I didn’t grab it, she was already out of the hotel room when I got to the eighth floor.
Me: What are you talking about?
Shelly: She greeted me as soon as the elevator door opened, so I did not even go to the room. Someone must have gotten her out before I got there.
Me: Shelly, that makes no sense. Why would the hotel staff let a dog out of the room to wander around the hotel without a person?
Shelly: I don’t know, it did not make sense to me either.

Then it dawned on me: the door to the hotel room was a lever. My crazy dog had let herself out of the room. I called Peter with my predicament and explained that we’d be late, and that my dog had broken out of our hotel room and would be joining us at dinner. Shelly and I crawled our way up Charles Street back towards our original destination and eventually arrived a mere 20 minutes late. Unable to find parking, I called Peter again and begged for his assistance. I was anxious to see all of my old teacher friends and felt like a proper asshole for being late. Meanwhile, Shelly’s hair was about to fall out of her head after driving through Baltimore traffic, and trying to parallel park on crowded one-way streets was beyond what either of us could handle. Peter traipsed out of the restaurant as Shelly unloaded me from the van, and I implored – as Shelly passed off the keys – “Can you please put Izzy’s vest on and bring her in after you park? I think it’s still too hot for her to sit in the van.”

Shelly and I went into the restaurant, completely forgetting that Izzy didn't have a leash in the van. Once I introduced Shelly to my favorite friends from Baltimore, all of whom had been sitting at the table for at least 30 minutes, I awkwardly parked my chair under the edge of the long table and turned around just as Peter walked in with Izzy. He had removed his belt and looped it through her collar, and had buckled her therapy dog vest around her midriff rather than around her chest, so as she walked it wiggled down towards her hind end and resembled a diaper. Meanwhile, unaccustomed to being in restaurants or surrounded by so many friendly people, Izzy was ebullient; her eyes squinted as if she were smiling, she tilted her nose in the air to smell all the delicious food and she wiggled with excitement. I could almost hear her say, “See what good things happen when I escape from hotel rooms?”

We ate dinner, shared dessert and made general merriment until the post-meal surprise: tickets to see Peter Bradley Adams at a local venue, one of my favorite singer-songwriters. The concert was scheduled for 8 o’clock, so we needed to head out as quickly as possible. The only problem? Izzy. What was I going to do with my dog during a two-hour concert? Mercifully, one of my friends at dinner was not accompanying us to the concert, and he volunteered to dog sit for the rest of the evening. (Probably something he will never do again.)


The concert was incredible. Shelly describes Peter Bradley Adams as a “closed mouth singer” but his voice resonates with me, and beyond that, I just felt so loved and so grateful to everyone who made the entire evening possible. And despite the fact that my therapy dog escaped from a hotel room, made us late to dinner, and ruined any chance of my friend Matt having a relaxing evening with his wife due to Izzy's irrational anxiety about spending time with strangers, I will always look back on that night as one of my top 10 favorite memories. It certainly would have been more seamless without Izzy, but it would not have been as memorable. For any of us.