Saga Redux Part 2

The CT simulation takes anywhere from twenty minutes to an hour. The patient lays on the table and the body area being treated is immobilized with either a mask (for head and neck) or a Vac-LokTM cushion filled with Styrofoam beads. When air is removed from the cushion, it creates a unique mold, so that the patient is in the same position for each treatment. The tech also marks the target area with tattoos, guided by laser beams across my abdomen.

They gave me these instructions to follow before my simulation appointment:

I’m not sure how many people are able to empty their bowels and bladder on command. Everyone’s physiology is unique, so generic instructions like this should be taken as suggestions, not dogma. I used a disposable enema in preparation for the simulation and drank water as ordered. CT appointments were running late, and I had to cross my legs by the time the tech called me.

“Is your bladder full?”
“It’s more than full. My teeth are floating.”
“Well, you’re going to have to hold it for at least 20 minutes. Do you think you can do that?”
“Oh, hell no!”
“Well, empty your bladder a little bit but not too much.”
That’s easy for you to say…

The CT simulator room was down a long hallway past steel double doors and far from the treatment rooms. The tech placed what looked like a heavy, vinyl sleeping bag on the bottom half of the simulator table before I lay down. A few minutes later I felt the Vac-LokTM bag harden around my legs. The tech left the room after all was set, and all I had to do was lie back and think of England for the next 20 minutes.

When the scan was finished, she made three cross marks with an ink pen – one in the middle of my lower abdomen and one near each hip – and covered them with waterproof tape. I’d get permanent tattoos at my first treatment. Before I got off the table, she took my picture with a small digital camera. My DMV mugshot looks like a Rembrandt portrait in comparison.

A radiation physicist and/or medical dosimetrist uses the information acquired by the scan to calculate radiation doses, precise target locations and the number of daily treatments required. This can take a few days or a couple of weeks. (I also think they use the time to ensure treatment is covered.) Treatment starts after the radiation oncologist approves the plan.

I got the call on January 24 to start treatment the following Monday.


The Radiation Oncology treatment center runs about 80 patients through two rooms every day. New patients are fitted into available slots for the first week or two; they get a regular appointment time as other patients complete their treatments and leave. My appointments were anywhere from 1:15pm to 4:15pm before getting a 12:30 slot at the end of week 2. This was a great time because there were more available parking spots near the entrance.

On Monday I arrived 15 minutes before my appointment only to find my first treatment session was cancelled because of some issue with the machine. Carla explained someone had called me, but I didn’t recognize the number and had ignored it. (Note to self: add important number to your contacts.) She assured me their technical people were working on it and I should be able to start the following day.

Peg had gone into work, so she called to ask for an update.

“So how did your first session go?”
“It didn’t. The machine was broken.”
“What happened?”
“Well, it got stuck and the guy who was in there got a massive radiation dose and he exploded all over the place. There are guts on the wall, and they had to bring in a hazmat team to clean it up.”
“WHAT? Oh my God!  That poor man! I can see where they’d need hazmat with all that radiation…Wait, did that really happen?”
Me snickering on the other end.
“You’re an asshole.”

On Tuesday Radiation Oncology called me just as I was getting ready to leave.

“We’re still having problems with the machine, and they are waiting for a part.”
“What, STILL??? So, I’m going to have to wait another day?”
“No, we are trying to work people in. Can you come for a treatment at 4:15 today?”
“Yeah, that will work.”
Not as if I have a choice.

Peg was livid when I told her.

“It’s not a problem for you; you’re retired, and it’s only a 15-minute drive for you. What if it was someone who was working and had to arrange time off? Or someone who had to drive 30 or 40 miles to get to their treatment? If we have a problem with our computer system, someone is on it right away! If this is going to be a regular occurrence, we might have to think about going to one of their other facilities that is more reliable for your treatment!”

Carla took me back to the treatment area for the first time and showed me the locker room. After that, I was allowed to pass GO and head back on my own. There were separate locker and waiting rooms for men and women, not unexpected since most patients wore hospital gowns to expose their treatment areas.

The flat-panel TV on the wall drowned out the overhead speaker playing classic pop music from the 1960s to the 1980s, appropriate for our ages. There was a rotating collection of old guys in the waiting room during my first week; we recognized our arrivals with nods or grunts while watching Bonanza and Rifleman reruns. Several times one man sat in the corner reading a book. I assumed he was there supporting his wife since no one ever called him back for treatment.

Mostly we kept to ourselves, but one day an older man started talking to me about his disease. I wasn’t sure what to say so I just listened.

“I had prostate cancer and now it’s in my bones. They did this procedure (therapeutic plasma exchange) where they take your blood out and clean it and put it back in and that’s helped a lot with the pain.”

He seemed far less upset than I might have been, but maybe that’s part of getting older. You’re resigned to the things you can’t really change and just hope the eventual end isn’t terribly painful.

I couldn’t have any metal (rivets, buttons, zippers) near the treatment zone, so in the beginning I changed out of my jeans and put on a hospital gown. By the third week I’d learned to wear sweatpants and slip-on shoes after seeing another guy wearing them. One might figure they’d make that suggestion to patients, but one would be mistaken.) I’d toss my jacket, car keys and shoes into the locker and was ready to go.

I played around with the amount of water and the time when I started to drink. I learned not to eat a Reuben just before drinking because the fat slowed down water absorption. I tried drinking a lot more than usual to get my bladder to fill, but I paid the price when I peed like a racehorse for a couple of hours, long after my treatment ended.  

I started wearing Depends because it was difficult to fill my bladder enough to keep the techs happy but not so full that I might leak. One time the tech, a young guy probably in his 20s, told me my bladder wasn’t full enough and I should drink more water before the next treatment. (That’s easy for you to say.)  I’d gotten the sudden onset of explosive diarrhea right before my session and unless I clamped the hose with a chip clip, my bladder was going to be on the dry side.


My routine: Every day the techs call my name and escort me to a long desk on which sat several computer screens. Each time they ask for my name and date of birth, which I think is a bit silly. They know my name, my picture is on the computer screen, and I can’t imagine why anyone would sneak into radiation treatments for the hell of it.

There are three large signs above the entrance – HDR, BEAM and XRAY – which illuminate depending on which process is active. The department uses high dose radioisotopes (HDR) such as iodine-131 (I-131) for treating thyroid cancer. I’m getting Intensity-Modulated Radiation Therapy (IMRT) which uses higher doses of x-rays (BEAM). XRAY lights up when doing a CT scan, a much lower dose, before treatment.

I walk in past a 10” thick door filled with lead and into a lead lined treatment room.  When I told Peg about the lead, she said, “See! The chances of a disaster are low but not zero!”

The star of the show is the Varian TrueBeamTM Linear Accelerator. The kV x-ray generator and flat panel detector are at 3 and 9 o’clock. The Electronic Portal Imaging Device (EPID) is at 12 o’clock. The linear accelerator treatment head is at 6 o’clock.

I drop my pants and jump on the table, putting my legs in the Vac-Lok mold. They ask if I want a blanket, but I decline because it’s warm in the room. They are quick to cover my nether regions with a pillowcase, but I think it’s for their peace of mind more than mine. Old man penis, like its owner, is tired and not much to look at. Laying on my back is uncomfortable. I’m trying to keep my bladder from leaking, and my right shoulder hurts when I put my arms above my head. I just want to get it over with.

They raise the table and push it towards the machine. They still need to adjust my body by yanking on the sheet beneath me. “Pull a quarter.  Pull a half. Pull one.” When the lasers are lined up with my tattoos, they leave the room. I hear the door creaking as it closes, and I wait.

The CT parts move into position. The machine then makes a single smooth rotation and forms a CT image of my pelvis which appears on the computer screens at the desk. Then the tech compares a digitally reconstructed radiograph (DRR) with the scan for fine alignment. The scanner parts are moved back to their resting positions, and I wait while things are lined up. Sometimes the tech remotely adjusts the table before the treatment begins.

There’s a dull thud a few minutes later which I assume is the accelerator powering up. A red light on the wall starts flashing. There’s another thud followed by what sounds like a swarm of cicadas as the machine starts to rotate. This time the machine’s movement is a little jerky.  (Dr. Howard told me that happens as the collimators in the treatment head adjust, shaping the treatment beam.)  It makes one full rotation, pauses for six seconds and then rotates in the opposite direction.

Occasionally the machine will stop and beep. They told me afterwards not to worry, because automatic sensors stop it if the sheet got too close, and no, it wasn’t continuing to fry my innards. They had to reboot the computer system during another treatment. You’re sure everything is OK out there?

The machine stops and I can hear the blast door opening. The techs lower the table as I pull up my pants. They remove the mold and help me sit up. I say, “See you tomorrow.” Then I make a beeline for the bathroom.

Every Tuesday they take my weight, and then Danielle escorts me to an exam room and asks me the following questions:

“How are you feeling?”
“Pretty good.”
“Any problem with diarrhea?”
“Not enough to need Imodium.”
“Any problem with urination?”
“Nope.”
“How’s your energy level?”
“It sucks.”
“OK, I’ll tell Dr. Howard you’re ready.”

Some side effects can be debilitating. A friend of ours, who is really skinny, suffered radiation burns to his lower abdomen that were so painful his wife had to drive him to his appointments lying flat in the car. The mother of someone with whom Peg works has to drive 40 minutes to her sessions and sometimes is so tired she can barely get out of bed.

Diarrhea has been the worst side effect. I initially thought it was because I no longer had a gall bladder, but it was much worse than that. The first bowel movement of the morning is normal; after that it’s watery like my colonoscopy prep. I can hear my intestines gurgling and I get sudden urges for the next few hours.

Fatigue has been the most frustrating. I have a long list of things I’ve wanted to do since I retired, but motivation is near impossible. I want to nap all the time, but I fight the urge, which does me little good. I’m still tired and nothing gets accomplished.

Dr. Howard comes into the room a few minutes later and goes over what the nurse has told him. I verify my answers for him, and he says, “You are doing remarkably well. I’ll see you next week.”

During one visit I asked him, “What’s the chance of recurrence?”
“Let me look at your pathology report.”
“Gleason 9 with EPE (extraprostatic extension.”
“Yes…I think we have an 80-85% chance of cure.”

This wasn’t surprising given my tumor was aggressive. If I’m lucky, any recurrence will be slow and late enough that something else will kill me first.


My visits with Dr. Howard are short because I am a physician and not a typical patient. We speak the same professional language and have an intuitive understanding of each other. (Peg says we share “the secret handshake” that grants me access to special courtesies like being released from the hospital three hours after my prostate surgery.)  I’ve had very few side effects and there is little need to spend a lot of time with me.

Lest you think the physician visit is superfluous and merely a reason to charge for the visit, I can assure you it’s not. He or she is monitoring a patient’s progress and needs to be aware of anything that might require altering the treatment plan.

The average patient is likely to be overwhelmed with a cancer diagnosis and subsequent treatment. Nurses have a special role as the intermediary. Patients will often impart far more information to the nurse because “I don’t want to bother the doctor.” They pick up on a patient’s non-verbal cues such as reluctance, anxiety, frustration, or anger. And it’s not unusual for a patient to tell the nurse one thing and the physician something entirely different or contradictory.


I got a garden-variety cold the last week of treatment and I was far more tired than usual. (I suspect it’s because my niece had one the week before me. She is a pre-school nurse, and her charges are disease-spreading vermin who rarely suffer as much as adults with the same maladies.) As I left the treatment room the second to last day I said to the tech, “I’d like to say I’m gonna miss this but I’m not.”

Finally, it was over. I dragged my tired ass out of the locker room and rang the large bell sitting at the desk, signaling the end of treatment. I said goodbye to Danielle and hugged Carla on the way out. The staff was great, and I can’t thank them enough.

It’s been a few weeks since I finished treatment. The diarrhea has slowly gotten better, but I still have a throbbing, painful hemorrhoid reminding me every day. I’m less tired which may be due to more sunny weather as well as recovery.

I’ll get my first post-radiation PSA and see Dr. Howard at the end of June. It probably won’t be down to zero because radiation therapy isn’t like a laser blasting everything in its path. Instead, it kills some cells and damages the DNA of others so those cells can’t replicate. (How Radiation Therapy Treats Cancer-NCI)

I’ll discuss the aggravation of dealing with billing in another post, but the ballpark estimate of charges for my treatment is around $69,000.

Featured image © Can Stock Photo / focalpoint

Saga Redux

In December 2019 I had surgery for prostate cancer after my annual PSA levels, which I’d beengetting since 2007, started to gradually increase in 2017. The surgical pathology report showed my tumor was more aggressive than the biopsies, and even though the resection margins were clear, the tumor had already started to extend beyond the prostate. Radiation treatment for a recurrence sometime in my future was likely inevitable. I would get PSA tests every three months for a couple of years, then every six months if they remained negative or stable. Eventually, if all was well, I’d get annual PSA testing for the rest of my life.

My PSA levels during 2020 were <0.014 ng/ml, below the level the test can detect. The first one of 2021 was 0.015 ng/ml, a very insignificant increase. My levels rose again slightly before hitting a plateau between 0.022 – 0.027ng/ml. In December 2021 Dr. Fine, my surgeon, recommended I get tested every six months. In June 2022 the result was 0.023 ng/ml, and I was relieved it had gone down.

Six months later my PSA was 0.044 ng/ml, almost double the previous level.

I sat at my desk for several minutes, starting at the results on the monitor. Intellectually I’d known this was a possibility, but now it had become reality and I wasn’t sure how I felt. It wasn’t a death sentence and the low level meant I didn’t have a large cancer with metastases. I was more worried about how Peg would react.

“My PSA was point-zero four-four.”
“Ok. How do you feel about that? It’s been a good three years.”
“I dunno. I’m not surprised but I’m not sure what to do next. I should probably ask Dr. Fine what he thinks.”
“Well, I’ll support whatever you want to do.”

Now, back in the good (or bad) old days, before e-mail, smartphones, and websites, I called patients on an antique, corded landline to discuss important issues, like abnormal Pap smears and biopsy results. Now most large health care organizations use MyChart, an application that allows patients to schedule their own appointments, communicate with their healthcare providers, view their medical records and test results and pay outstanding bills, all while adding another degree of separation between patients and said providers.

My health care organization, Suburban Medical Center, is more interested in efficiency and revenue than customer service; their medical providers are tightly scheduled and controlled. They prefer to communicate via email, often after hours or during a rare break.  There are no direct phone numbers to any of the offices; one has to call the generic department number. If I want to talk with a physician’s nurse, the department personnel might try to contact her (usually her).

I sent a message to Dr. Fine through MyChart.

Me: Level has doubled. Now what?
Dr. Fine: Since lower than 0.05, I recommend repeat PSA in 3 months. We can follow it a bit closer. If it continues to rise, we would consider planning for salvage pelvic radiation therapy.
Me: Pelvic salvage sounds like a sunken ship. So is this likely tumor cells, residual tissue or Karma messing with me?
Dr. Fine: Not Karma Salvage RT sounds bad but can provide cure for you. We went 3 years with just surgery which is great for your very aggressive cancer. If you’d like, I can arrange a visit with our radiation oncologist, Dr. Howard.
Me: Only if you think we’re at that point. It seems the experts don’t agree on the threshold; 0.05, 0.1 and 0.2 are the numbers I’ve come across.

Whether to treat or continue monitoring depends on the level and the rate of PSA increase, but in the end it’s what the patient wants to do. Ultimately, I decided that continuing to follow PSA levels would only increase my level of anxiety and delay the inevitable.

I asked the office to set up a referral and ran into my first problem. Someone entered a referral to Hematology/Oncology. I tried the “Find a New Provider” option in the application, but Radiation Oncology didn’t appear on the list. I found Dr. Howard on the organization’s general website but there was no option for making an appointment. Round and round we go.

I thought making an appointment in person would be more expedient, given the office is only a few miles from my house. Carla, a diminutive, cheerful woman greeted me as I walked in.

“My name is Carla. How can I help you?”
“Is this Dr. Howard’s office?”
“Yes, it is.”
“I had surgery for prostate cancer 3 years ago and now my PSA levels are going back up. Dr. Fine suggested I talk with Dr. Howard about radiation. I’ve been trying to make an appointment and it hasn’t been easy.”
“How soon are you hoping to see him?”
“Sometime in January is fine.” (I didn’t want to ruin Christmas with potentially bad news).
“Well, let me see what I can find.” She looked at the schedule for a few minutes.
“He’s got an opening on Tuesday January 10. You’ll meet with his nurse at 8:30am and she will go over a lot of information, then you’ll see Dr. Howard at 9:00am.”

I knew Peg would want to come to the appointments because she cares deeply about my wellbeing and doesn’t trust the health care system as far as she could throw it. She also asks far more questions than I do. I mostly wanted to talk about whether radiation was a good idea, how long it would last and what side effects to expect.

There were several other people in the waiting room on our appointment day. Everyone had to wear masks, but for some people rules are mere suggestions. There was an old guy in a wheelchair whose daughter hovered over him while he took sips of coffee in between hawking up hairballs, sans mask. Why have a coffee machine in the waiting room if you’re supposed to keep your face covered.

Danielle, the nurse who does pre-consult counselling, called us into a room and, over the next 25 minutes or so, gave us an overview of radiation treatments, side effects and how to deal with them, and warning signs like rectal or urinary bleeding. I don’t remember a lot of details; you’d probably have to ask Peg. Having the nurse see the patient first is probably a good idea, especially with elderly patients, given that nurses tend to be far more patient. She gave us a packet of information and left.

A few minutes later Dr. Howard came into the room and gave us a warm greeting. He was a tall, thin bald guy who reminded me of Ru Paul. I shamelessly told him I was a retired physician; that often changes the tenor of the interaction. There’s no need to dance around delicate subjects like clinical judgement, diagnostic or therapeutic uncertainties, disability or death.

We’re here because my PSAs have gone up relatively quickly in the past six months. Given my tumor was more aggressive than the biopsies and there was extraprostatic extension, I figured we’d be doing this sooner or later. Is there an advantage to doing this now over waiting and following PSAs?”
“I know what I’d do in your situation. Radiation is like battling an army. I can fight against 1000 soldiers or 10,000 soldiers. So, doing it now increases the chance of cure.”
So, how do you know where you’re shootin’?”
“We direct radiation at the bed where the prostate was. Before treatment we run what’s known as a CT simulation and map out the area. It takes about 2 weeks for the radiation physicist and me to set up a program. We’ll call you when we’re ready to start treatment. You’ll come in five days every week, but initially we’ll be putting you in to different time slots. You’ll have a regular time slot in a week or so as other patients finish their treatments.”
How long is this likely to take?”
Usually about 37-40 treatments. We’ll start doing PSAs again in about three to four months.”

I left with an appointment the following Tuesday at 4:00pm for the CT simulation.

Preauthorization

There’s a meme on the Internet that exquisitely illustrates the differences between the American and Canadian health care systems. (Since I don’t know if this is copyrighted, click here to view.)

Breaking Bad Canada
You have cancer.
Treatment starts next week.
END

Just because you have insurance doesn’t automatically mean the insurance company will approve payment without question. They require approval for anything that is likely to cost them a lot of money. Our insurer is very good at authorizing treatment. Other companies make their subscribers jump through a lot of hoops, even for cancer treatment, looking for ways to weasel out of paying. (A friend of ours whose wife ultimately died of her second cancer had to fight for things our insurer would have approved without question.)

Peg works for our insurance company, which stresses the employees are the “first line of defense against waste, fraud and abuse,” and as such are diligent guardians of precious health care dollars. And did I mention she hates the health care system in general?

She called our insurance company to ask about preauthorization for my simulation and treatment. This started a week-long exercise in futility, prompting her to wonder, “How do they manage to open the doors in the morning?”

“I started with one of our care coordinators who was very helpful. I asked about getting a pre-authorization for the CT simulation and therapy and how much this was likely to cost us out of pocket. She told me Suburban Medical hadn’t submitted pre-authorization requests yet, so she called Linda in Radiation Oncology. Ultimately, they determined there was no need for the pre-authorization for the simulation because it’s not for diagnosis. We’ll need it for treatment, but they can’t provide a cost estimate until after the provider submits a treatment plan.
“So, then I called someone else to try and get a ballpark figure for radiation treatments. He found general cost estimates for prostatectomy and brachytherapy but nothing for radiation. He suggested I call Suburban Medical, which I did but I left a voicemail and haven’t heard back.”

A week later she tried again.

“I called the care coordinator again; she hadn’t gotten a pre-auth yet, even though it’s been ten days since your consult and your simulation was at the beginning of this week. Suburban Medical told her she wouldn’t get any requests until the imaging results were available. It usually takes a couple of days to approve it, but she said she’d fast track it for us before treatment starts.
“I called Suburban Medical but whoever I spoke with couldn’t supply any cost estimates. She suggested I call our insurer back, which I did. Our rep said the provider should have this information easily available since this is their business. He’d need more information because estimates are based on the individual provider, the specific plan and reimbursement contract. He did say, ‘You’re likely to blow through your deductible and out of pocket before this is over.’
“I finally gave up and went to Google. Estimated costs for radiation therapy for prostate cancer recurrence range from $33,000 to $67,000.”

Wow!

I’m fortunate having insight into the health care system as well as a tenacious woman looking out for my interests. Imagine, though, the aggravation and anxiety a person with little disposable income has to endure, navigating through a confusing bureaucracy and wondering how to pay for several thousand dollars of treatment while coping with a cancer diagnosis.

I’ll discuss the simulation and treatment in my next post.

Featured image © Can Stock Photo / bertoszig

Memories

It’s been a little more than two months since Baxter crossed the Rainbow Bridge. We miss his furry little face every day, but we have so many memories of him to ease the pain.

The Early Years
Baxter was a very smart puppy. We took him to an obedience class at Pet Smart soon after we got him. He impressed the trainer, learning the commands quickly while the other dogs seemed to struggle, although the training treats were a great incentive. He learned the usual tricks – sit, high-five, shake hands – and every new visitor to our house was an opportunity to show off.

Peg taught him some unique tricks, like “let us pray” and “sign of peace” so he could join Sunday Mass on the television. I taught him “Bang, you’re dead,” which he did with a dramatic flair. Then I’d tell him to roll over and give him two treats for an Oscar-worthy performance. One trick he never learned was “put your toys back into your crate,” no matter how many times Peg tried. He’d look at her as if to say, “Why should I? That’s your job!”

Baxter lived with a cat before he came to us and adopted many cat habits. He liked to stretch out on the back of our couch. Sometimes when we picked him up from the groomer, we found him on the counter next to Miz Laura’s cat who either tolerated or ignored him.

He got so excited when we took him to the groomer, Miz Laura for “Spa Day.” He’d start squealing and jumping around the car when he realized where we were going. He strained against the leash until we got inside, then ran around in circles when Miz Laura came out to get him. They often let him roam free after his grooming. Miz Laura always put a bandana or necktie around his neck, and he looked really handsome!

He figured out how to get to the island in the middle of the kitchen by jumping from the couch to the dining room table to the counter and then the island. I learned to put meat into the microwave to rest after catching him mere inches from the “spoils of war.” Peg didn’t believe me when I told her about Baxter’s acrobatic feats. “He can’t jump that high!”

Her skepticism bit her in the ass the first Halloween with him. I was out of town on a job and Baxter got into leftover chicken bones she had left on the counter, which led to an emergency visit at the veterinarian’s office and a $300 bill. When she called, I said, “Thank you, Jesus,” having avoided the royal ass-chewing I would have gotten if it was my fault.

He loved sharing our dinner, but we quickly learned he wouldn’t eat his dry dog food nuggets if he got people food first. He didn’t like eating alone, so we’d sit in the family room while he dined, then we’d adjourn to the dining room for his “Taco Bell Fourth Meal.” He’d sit on the floor between us, or he would jump on the dining room chair next to me if the handouts weren’t coming fast enough. He’d jump on the table if he was particularly impatient.

Feed me!

And he was very fast. Once evening he grabbed a stick of butter off the table and flew to the floor before Peg could catch him. Another time he sat on the chair at the far end with his paws on the table while he eyed Peg’s steak intently, calculating his chances of success. I imagined Ennio Morricone’s Spaghetti Western music playing in that little brain.

Merry Christmas! Where’s mine?

When he got bored with the nuggets, he’d toss a toy into his bowl. Or he’d say, “Fuck the nuggies! I want your food!”  We eventually switched to four-dollar-a can dog food, mixing in a bit of dry food for adequate nutrition, but there were still evenings when I ended up tossing it in the trash.

Here, YOU eat this crap!

Baxter was a carnivore who loved any kind of meat, but he was especially fond of my brother-in-law’s pulled pork, cooked low and slow on his beloved smoker. One summer the family gathered at our house for pulled pork two Sundays in a row; Baxter thought he’d died and gone to doggie heaven. He was positively miffed when, the next Sunday, the family brought pizza. He gave a snort of disgust and retreated to the family room.

Baxter also loved sweet things like whipped cream, Dairy Queen and Culver’s frozen custard.  I’d take him to Dairy Queen in the afternoon and we’d share a soft-serve cone. Usually, he dove into it but sometimes he would wait until the third or fourth offer before remembering, “Oh yeah, I like this stuff.”  We often took Baxter with us when we went to Culver’s for a sundae, rewarding him with samples on the way home. He also enjoyed the Pumpkin Shake, available only in October and early November.

Our local grocery store Jewel shares the same parking lot with Culver’s. One evening Peg drove to Jewel to pick up a few things, taking Baxter along for the ride. (If I recall correctly, he ran to the car as soon as Peg opened the door to the garage.) He kept looking at Peg as she drove past Culver’s: “Wait. You’re not going to stop? Why did you bring me in the first place???”

The Guardian of the Cul-de-Sac
The Tibetans bred Shih-Tzus (which translates to “little lion” in Mandarin) from the Pekinese. Pug and Llhasa Apso. The little dogs were initially used to warn the royal court of intruders but later became companions. Baxter appointed himself as our guardian, standing sentinel at the patio door for any riffraff that might pose an imagined threat.

He went ballistic when people walked by and became more incensed if accompanied by a dog, large or small. It didn’t take long for him to figure out that whomever he saw from the patio door would reappear on the other side of the house. He’d run upstairs to the guest room, jump on the bed and continue yelling until they were out of sight. If anyone walked on the sidewalk in front of the house, he’d run back and forth between the guest room and our room, sounding more like a thundering herd of cattle than a fifteen-pound dog.

The Daily Rituals
I took him out to pee every morning and then fed him breakfast, followed by an insulin injection once he became diabetic. He used to demand a walk before I could have coffee, but as he got older, he was content to take the early morning nap, followed by a quick stretch before the late morning nap. We settled into a predictable routine which included daily afternoon recreation.

He loved car rides. When he wanted one, he would stare at me or jump onto the couch and paw my hand. If I asked, “Would you like a car ride” he would bark and go to the back door. Sometimes he’d run to the car if I opened the door to take the garbage out. Occasionally he’d try to con me into a ride at 11:00pm. Sometimes he’d get lucky, and I’d indulge him since a short trip around the neighborhood was enough.

He liked going for walks up to the playground near our house and back. I started taking him to another park after he yanked a muscle in his neck playing “whose dick is bigger” with the dog behind the neighbor’s fence. He couldn’t see her but knew she was there. That turned into a midnight visit to the emergency vet during COVID.

The Nightly Rituals
Baxter wanted to go upstairs at 5pm during the winter because it was dark and, in his mind, time for bed.  We resorted to putting up a gate in the hall because otherwise he would run upstairs and start barking for us to join him. He’d reluctantly stay with us if we were watching television, but his patience ran out around 9pm, when he started pulling my socks off with his teeth.

I started eating a mozzarella stick at bedtime to keep my fasting blood sugar at a reasonable level; Baxter soon expected me to share. Our nighttime ritual evolved into a protein snack, several  Old Mother Hubbard cookies, a drink of water and four pieces of Pill Pockets. If Peg wasn’t fast enough with the Pill Pockets, he climbed on her and tried to snatch the bag out of her fingers. His attitude towards cookies was, “We’re done when I say we’re done!” One night when he started barking for more Peg told him, “You’ve had enough!” The little shit then jumped off the bed, ran downstairs to one of his many stashes, brought a cookie back to the bedroom and devoured it while looking directly at Peg.

He slept at the foot of our bed, but I would move him closer to us before we went to sleep so he wouldn’t roll off the end. He growled but never opened his eyes. He used to love curling up in bed under my chin when it was cold; I’d listen to little puppy snores through the night. If he woke up before me, he would stare at me, willing me to get up.

Toys
Baxter loved ripping the appendages off his favorite stuffed toys. He went through several Gorillas and Dragons. He liked to pull the stuffing out of Panda and ripped out Peg’s repairs several times. He had a pink rabbit who, after having his ears and legs torn asunder, became a blob we nicknamed “Stinky Bunny,” well-marinated with doggy saliva. We tried to send Stinky Bunny to the farm upstate, but Baxter managed to rescue him from the trash.

Poor armless Gorilla!

Flying Bear was another favorite toy. He loved to grab it with his teeth and whip it back and forth. We tried to find a replacement when Flying Bear became overly ripe, but didn’t have any luck.

Quirks
He liked to lay on the couch’s footrest and watch television with us; he’d lay very still and stare intently. Sometimes the only way I knew he was still awake was when his ears would twitch. But several things would set him barking at the screen while jumping against the entertainment center:

  • The Buick jingle
  • Any program in black and white
  • Black people on TV (though not in person)
  • Animated films (Peg gave up trying to watch Disney’s Brave because he’d go berserk)
  • Animals on TV, even if he’d never seen one in person.

When I left for a job, he would put several of his toys on my office chair or in my spot on the couch. I guess he was keeping my spot warm. When I came back from Springfield, he knew when I was about 15 minutes from home, because he’d sit by the door to the garage. Peg called me and we’d count down the streets until I pulled into the garage. Sometimes he and I would bark at each other over the phone.

I learned to devote the day of my return from a job to the happy homecoming and indulge his every wish/demand. “Your ass is mine!” We had to go for a walk or a car ride IMMEDIATELY! I had to walk him for a walk every morning before he would let me work in my office.

Later years
Baxter liked to greet anyone coming into the house until he got older. Then he’d run upstairs, coming down only when he thought it was time for people to leave. He turned into a grumpy old fart like his daddy.

Baxter couldn’t easily get up on the bed in the guest room to survey his kingdom the last year he was with us, so he spent his time in a day bed on the floor in Peg’s office. He developed some quirky habits like scratching anything that struck his fancy: the filing cabinet; a binder on the floor; the trash can. Sometimes he would drag a piece of paper off one of the numerous piles on the floor and shred it. Peg would yell, “Stop that!” He’d give her that “What?” look and then resume digging, sometimes deliberately looking at her.   He started knocking over a box of beef sticks under Peg’s desk. She would put them back in the box and he’d knock it over again. Eventually, she gave up.

Sometime during the summer, he developed the habit of wandering down the hallway like the night watchman before he finally settled down. He didn’t want to sleep on the bed with us, so I bought another doggy bed for our room. Some nights he preferred the bed in Peg’s office.

I think the most remarkable thing about dogs is they live in the moment. They don’t appear to grouse about getting older and I don’t think they ever contemplate mortality. Every day is a good day, even when it isn’t.

Vaya Con Dios, Mi Pequeño

Several years ago we suspected Baxter had become diabetic and had a bladder infection. He was drinking even more water than he normally would during the summer, and he urinated large quantities more frequently. We took him to Dr. Laura, our veterinarian, with our concerns.

“Normally I’d question someone else’s diagnosis but you two are pretty astute and you’re probably right.”

His blood sugar was 600 and he did indeed have a bladder infection. Dogs usually do not develop Type 2 diabetes; their pancreatic islet cells just shut down completely. Insulin remains the only treatment but titrating the dose required a few all-day suckers for glucose curves. Baxter used to love going to see Dr. Laura but, after three glucose curves over a few months, he associated the veterinarian’s office with things unpleasant and traumatic.

Baxter did really well for the next few years. He adjusted to the insulin quickly after Peg promised him two training treats after each injection. His appetite was never a problem. I started taking him to a local park for his afternoon walk after he went berserk over the neighbors’ dog behind the fence and got a terrible neck muscle strain yanking on his leash. He developed a cataract in his right eye; diabetes and age would eventually take its toll on the rest of his vision. But he still appeared to be one happy (and demanding) puppy.

Dr. Laura discovered a lesion in Baxter’s mouth in May 2021 when he went in for his heartworm test.

“He’s got this black thing on his upper gum that wasn’t there a few months ago when we saw him for his dental, and I’m afraid it might be melanoma. It’s the most common location in dogs because of the hyperpigmentation of their oral mucosa. I want to get him in to remove it as soon as possible; then we’ll just wait for the pathology report.”

A week later she told us it was indeed canine melanoma, but with a low mitotic rate, giving us some hope, even though the lesion had appeared rather quickly. She suggested a consultation with the local veterinary oncology group so we made an appointment.

We were still in the middle of the COVID-19 pandemic so we sat in the car in the heat while one of the vet techs took Baxter inside for evaluation. The veterinary consultant came out to talk with us after about 45 minutes. She was young, sweet and well-meaning but lacked the pragmatism that comes with experience.

“If we don’t do anything, you can expect him to live about three to six months. We can do surgery to remove part of his jaw treat him with radiation, once a week for 6 weeks after he’s healed from the surgery. We’d have to sedate him every time he has radiation. That might give him more time, probably six to twelve months. Since he is diabetic, though, it’s important to keep him on a strict diet and feed him every 12 hours. He shouldn’t have any treats or people food.”

Peg and I glanced at each other. I imagined Baxter rolled his eyes and said, “Well, that ain’t gonna happen,” under his breath.

We thanked her and then talked it over with Dr. Laura.

“He’s fifteen years old and I can’t see putting him through such misery at his age. We can see him every six weeks to follow the tumor’s progress. If he stops eating or appears to be in pain, we can talk about what to do then.”

We agreed and took him home, hoping he would last at least until Christmas. The tumor slowly reappeared but it didn’t seem to bother him. Christmas came and went and when Baxter went in for his annual heartworm test in May 2022 and appeared to still be relatively healthy, Dr. Laura felt that he was more likely to die of something other than the melanoma, so she asked to see him in three months.

By the summer he was definitely slowing down. He spent most of the day sleeping, but he was lively when awake. His appetite was good and he still insisted on his bedtime Pill Pockets. (We joked about “opening another dime bag,” because they were running about eight bucks apiece.) His vision continued to deteriorate; he knew where his water bowl was and I had to guide him to his breakfast and dinner. Sometimes he would get stuck in a corner or beneath the dining room table and we’d have to coax him out.

He could usually make it up the stairs but he was reluctant to go down on his own because his vision was so poor (he’d tumbled down more than once). So he would call for his faithful manservant.  I’d hear his collar jingle as he shook himself, then a low growl. If I was too slow to respond, he’s start barking with the classic Shih-Tzu “arf-arf.” (Translation: “It is so hard to find good help these days. I don’t know why I haven’t fired you!”)

I’d climb the stairs and kneel short of the top so we were face to face. I’d scratch his ears while he rubbed his head against me, then work my way back to a butt scratch and tummy rub. He’d wag his tail though not as furiously as when he was younger. I’d always ask for a kiss but he was notoriously stingy, only kissing early in the morning on rare occastion before he remembered he was a tough guy. “No kiss for you!”

Around August Baxter started sleeping poorly at night. He’d usually get up around 2:30am and I’d take him outside; some nights he got up every two hours. That I was retired and could nap during the day made it a lot easier.

By early October he often appeared dazed after his nap, as if he didn’t know where he was or what he wanted to do – doggy senior moments. When he peed by Peg’s desk chair, completely unaware, we pondered that which we’d been avoiding. Maybe it was getting close to his time.

I noticed his tongue flicking in and out when I went upstairs to get him for dinner on Wednesday. On Thursday he started shaking his head as if he had a Parkinson’s tremor. I took a couple of videos on my phone and showed them to Dr. Laura.

“That definitely looks like seizures. Once that starts to happen…”

Peg and I had long ago decided that we wanted him put down at home, especially since he’d become terrified of the vet’s office. Dr. Laura’s practice had become very busy because of COVID and her colleagues, like those of other practices, were stretched thin and she wouldn’t be able to come on short notice. But, she said, there were veterinarians whose sole purpose is providing our companions with the “death with dignity” humans are often denied. The Companion Animal Euthanasia Training Academy (CAETA) certifies practitioners in   compassionate and painless in-home euthanasia, minimizing the stress for both the pet and their parents.

Baxter had a major seizure Friday morning about 2:00am and he was terrified. I took him downstairs and outside, but he didn’t need to pee. He just whimpered and shook. I lay down with him in the family room for the next half hour trying to calm him down, then took him back upstairs. He had another seizure around 4:00am but this time he seemed oblivious for which I was thankful.

Peg started calling practices. The first one was a group of three veterinarians but two were out with illness and the woman Peg spoke with said she couldn’t do anything until Monday. She then called Compassionate Heart and spoke with a wonderful woman who said she would be at ou

We felt at ease with Dr. Jessica as soon as we met. We sat in the living room while she talked about her professional history and making the transition from veterinary practice to doing exclusively palliative pet care and in-home euthanasia.  She is certified by Fear Free®, an organization whose “mission is to prevent and alleviate fear, anxiety & stress in pets by inspiring and educating the people who care for them” and outlined the procedure.

“We strive to make this as stress-free as possible for him and for you. I usually start with a narcotic and sedative, but the sedative might induce a seizure, so I’ll just use the narcotic. As soon as he’s relaxed I’ll put in the IV catheter and I’ll use a topical anesthetic to minimize any pain. After that, I’ll give him Propofol to make him sleep. When you’re ready I’ll give him last injection, pentobarbital, and he will finally be free of pain.”

“How do you do this? I’ve had to deliver dead babies and it was NEVER easy.”

“People ask me that a lot. I had to put my own dog down a couple of months ago, but doing it at home in familiar surroundings is much less stressful than in a veterinary office. You’re alleviating their suffering and that’s what matters.”

Dr. Jessica went over cremation options. Memorial cremation is done with other pets so the cremains are not separate. A private cremation is done alone and costs more, but the cremains are exclusively those of your pet. The funeral home she used was a family business and “very meticulous.” She would transport him to the funeral home; they would call her in about a week to pick up the urn and she would deliver it to us.

I carried Baxter downstairs and laid him on the blanket she’d provided. She introduced herself to him, speaking softly while stroking his head and getting acquainted. The night had left him exhausted but he leaned into her hand as if she was an old friend.

We started feeding him the beloved Pill Pockets as a distraction. Peg said, “He can have as many as he wants since it won’t make any difference.” (Glycerol is the second substance in the Pill Pockets ingredient list and he got runny poop if he had too many at one sitting.) He didn’t notice when she injected the narcotic into the skin on his back, having downed half the bag.

He became groggy and eventually lay down on the blanket. Dr. Jessica normally puts the catheter in the hind leg so the family can comfort their loved one without an obstruction, but Baxter wasn’t having any of that, so she opted for his front leg. She shaved a patch in his foreleg with a small clipper, then applied the topical anesthetic. She inserted the catheter after a few minutes and he didn’t flinch, then injected the Propofol.

“He’s asleep now. When you are ready, I will give him the last injection.”

We sat with Baxter, saying our goodbyes and trying not to cry. I nodded to Dr. Jessica. She pushed the plunger of the syringe and waited a few minutes before listening to his chest with a stethoscope. He was gone and now at peace.

She took out something that looked like soft plaster and pressed his front paw into it. It would harden over the next several days. I tried to carve Mr. B in it but I lacked the manual dexterity and a proper tool, so I left it at “B.”

“I’m going to step outside and you let me know when you are ready.”

Baxter never liked to be cuddled when he was alive; he would squirm until I put him down. I held him in my arms as this was my last chance to do so.

Peg let Dr. Jessica know we were ready. She brought in a basket and we put him in one of his favorite blankets. We thanked her again and she left. Then we cried in each other’s arms, mourning his loss but thankful for the extended time we had with him.

The next morning I felt guilty because I’d gotten to sleep through the night. I swore I heard his collar jingling as if he was shaking himself after waking up. “It’s all right; there’s no need to feel guilty. I had a good life with you.”

I still leave the upstairs hall light on out of habit; I expect to see him when we come up for bed. I say, “I miss you, Boo-Boo,” every day. I haven’t had the heart to clean the dog boogers off the window he always looked out during our car rides. We kept hair from his tail, the last necktie he got from the groomers and, for now, all his dog beds.

I don’t want another dog right now, maybe never. I want to travel now that I’m retired, and it’s hard to leave a beloved family member when they are healthy, let alone aging and blind, even with someone you trust implicitly. Selfish, I know but I also don’t want to risk dying first; I’d half hoped Baxter and I would go out together

Maybe I’ll go volunteer at the shelter where we got him 11 years ago, leading myself into temptation, perhaps?

My next blog post will be our memories of Baxter.


RESOURCES

If you or someone you know has an ailing companion and want to give them a peaceful trip across the Rainbow Bridge, check out this link:  In Home Pet Directory

Lightning Strike Pet Loss Support: Founded in 1996 after the death of “a grumpy 19-pound longhair Maine Coon tabby cat,“ Lightning Strike provides “lightning-fast” pet loss support and grief counseling for pet lovers grieving over the death of a pet, a dying pet, sick pet, or a lost pet.” Resources include online forums, list of pet loss books, and live chats.

Chance’s Spot Pet Loss and Grief Support: Started in 1998 after the passing of the founder’s beloved English Setter, Chance. “Chance’s Spot provides an online support forum, publications on pet loss, hotline numbers, and referrals to anyone who needs help to cope with the grief associated with the death of a pet.”

Tree Givers: “Plant a tree in memory of a lost pet as the perfect, thoughtful memorial for friends & family members.”  Plant one, five or ten trees on public land in any state; certificates available framed, unframed or digital starting at $24.95.

The Pet Loss Support Page: Directory of Support Groups, Counselors, and Pet Cemeteries in the US, Canada, UK and Australia/New Zealand

Carruth Studio Pet Memorials

Scents and Scents-ability

What I started writing at 2am the night after my knee surgery

There are many unforgettable scents I’ve come across throughout life that I can imagine just by my memories. How many do you recognize?

Babies and puppies have their own warm, comforting scent, like that new car smell without the chemical outgassing.

The Sonoran desert in Arizona is home to a variety of hardy aromatic plants: desert willow; creosote bush; mesquite trees. I still remember what Sabino Canyon, northwest of Tucson, smells like in the searing midday heat.

Sonoran Desert landscape, Arizona

I found a decaying animal carcass along the Route 80 bypass just above Spring Canyon Road in Bisbee, Arizona when I was eight. There wasn’t much left, just a ribcage and desiccated but still rotting flesh, but the acrid smell was unforgettable.

Dead skunk in the middle of the road. Stinkin’ to high heaven!

I sometimes roamed the drainage ditch that ran along Tombstone Canyon in Bisbee. I would build earth dams across areas of flowing water, creating a reservoir I’d then destroy with imaginary Allied bombers (usually a stick). I remember the smell of wild mint among the sparse fauna. Now I would be afraid of contracting some water-borne illness like Naegleria, the brain-eating amoeba.

Eddie Rojo’s tavern in Bisbee had a shuffleboard table I’d play with while my stepfather indulged in his favorite pastime, soaking his regrets in Falstaff. The table had fine sawdust in the gutters which competed with the smell of old beer in the tavern’s floorboards. I liked sliding the heavy pucks up and down the butcher block playing surface that was smooth as glass.

I used to have an olfactory hallucination at night when I was little, which I can only describe it as “spoiled mustard.” I’ve never run across that smell when awake.

My grade school in Arizona had an auditorium that doubled as the lunch room. Kids’ sack lunches sat there unrefrigerated until noon. The pungent, nauseating odor coming from the contents usually made me puke on the table. The lukewarm milk cartons also had their own unsettling smell.

Mrs. Frost, my first-grade teacher, wore a very distinct perfume which I found very comforting. Thirty years later I instantly recognized that scent when my medical assistant Eileen wore it one day. She told me it was White Shoulders, created during the 1940s and still popular.

There was nothing like the smell of ditto ink coming from a warm test paper, fresh off the printer. We hold them against our faces and inhale before starting the exam. Generations of schoolchildren will never experience it.

I don’t remember my grandparents’ concrete house in Puerto Rico having window screens. At night our beds were enveloped in tents of mosquito netting laced with pyrethrum, an insect repellent derived from chrysanthemums. I can still smell it.

Family in Vega Baja, PR 1957

One didn’t need a clothes dryer in the desert, even in the winter. One of life’s greatest pleasures is taking in the fresh scent of bedsheets or clothes after they’ve dried outside, something no laundry product can match.

Winter in Bisbee, AZ, 1960

We were friends with a couple that had seven children, five of which were crammed into several beds in a small room. The mattresses were old and likely peed on several times over the years. I remember being 8 years old sleeping on one of those mattresses with one of their girls while our parents played cards into the night.

Back during the 1950s and 1960s most doctors’ offices had a strong antiseptic smell, most likely from isopropyl alcohol. It always made me think of those long, reusable hypodermic needles soaking in those stainless steel trays and the big glass jars of cotton balls and tongue depressors.

The scent of blooming flowers in the spring – roses, lilacs, apple and cherry blossoms – represent new life after a soul-killing winter.

Lilac Blossoms

That comforting, clean air smell after a fresh rain is called petrichor.  Some it comes from lightning splitting atmospheric nitrogen and oxygen, which recombine into ozone and nitric oxide. Another component is geosmin, produced by Actinomycetes, a bacteria found in soil.

Mount Washington, NH

Most people in temperate areas look forward to burning dead leaves in the fall. Those of us with chronic lung disease dread the smoke and many municipalities have outlawed open burning. Burning the evil weed, along with the red eyes, giggling and munchies, is a different story.

Autumn leaves in Gorham, NH

Wood-fire smoke comes in several varieties:

  • the hot, dry wood smell of a sauna
  • cozy when sitting around a fireplace in winter or a fire pit in the summer
  • oddly unsettling when it permeates everything in a house that has been heated solely by firewood
  • terrifying when it comes from the raging forest fire beyond the horizon

The air at sub-zero temperatures has a crisp smell largely because there are so few odiferous molecules in the air.

Svalbard Island, Norway

Everyone remembers having the pine scent of a fresh Christmas tree filling the house. I stopped getting real trees thirty years ago because the pesticides and preservatives caused bronchospasm. I take solace in the bags of cinnamon-scented pine cones that Jewel sells every year.

Christmas 1962

The dead mouse in the wall behind our range had an unmistakable musty odor. My two “helpers,” a cranky Lhasa-Apso and a greyhound with “a great nose,” tasked with helping me locate the carcass, sat in the family room and laughed while I drilled three holes between the studs before finding it.

The pseudomembrane of the upper respiratory tract produced by diphtheria infection is said to smell like a wet mouse, though I’ve never encountered either.

I reached a milestone in 7th grade when I realized that foul body odor was coming frtom my own armpits and it was time to start using deodorant.

The eye-watering rotten-egg smell of hydrogen sulfide, is “rancid” when in reference to a particularly noxious fart, but “smells like money” if you own a petrochemical refinery.

I stopped at a turnout on a back country two-lane and sat at the lone concrete picnic table under the trees. I noticed a slightly sweet but pungent odor nearby; it came from a cool, dusky pile of human feces about ten feet away. Someone must have been really desperate to drop a deuce on the side of the road. Well, when you gotta go…

There is absolutely nothing like the intoxicating, primal scent of an aroused woman’s vaginal secretions, now indelicately known as “wet-ass pussy.” I’ll never forget my first encounter, forbidden yet exciting! Regrettably, women lose that aspect of arousal with age.

Abstract vulva in fabric

Not everyone likes it; many young men who lack both discriminating olfactory epithelium and finesse find it “disgusting.”  The “personal hygiene” industry preys on women’s insecurities to sell crap, promising they’ll smell “fresh as a daisy.”

Fresh semen has its own unique odor, though I doubt most women find it alluring.

Human blood has a slightly metallic odor, especially when encountered in large quantities, such as after a postpartum hemorrhage, or on the floor around the operating table on which the dead guy with a .22 hole through his heart lay.

Para-dichlorobenzene gives mothballs and urinal cakes their pungent smell, which I’ve also detected in a couple of really poorly-maintained home bathrooms.

The black knobs on the lids of some cooking pots are made of phenolic resin, made from combining phenol and formaldehyde. They emit a very unpleasant odor after being heated in an oven.

It’s been said everyone has opinions and they all stink. Also that politicians and dirty diapers need to be changed frequently for the same reason.

Photo Credits © Can Stock Photo
Lavender field: Ariec
Sonoran Desert: ancientimages
Lilacs: sagasan
Arctic: carlosobriganti
Fabric vulva: mikhail_sheleg
Other photos: my collection