Don't Forget the Sunscreen

Cancer Diary

Don’t Forget the Sunscreen

Don’t forget the sunscreen. An odd directive from your neurosurgeon. I was given a pre-op medication to “light up” my brain tumor, enabling maximum removal. Interestingly, a side effect of this medication is any light, even from a lamp or fluorescent hallway light, will cause an extreme sunburn. A sunburn all of the O.R. nurses assured me I did not want.

“Bring sunscreen, but wait until after surgery to put it on,” were my instructions. (Which tells me a lot of patients probably put it on before surgery.)

The lights in my hospital room were turned off for 48 hours. My daughter brought in a small book light we set up in the bathroom so I didn’t have to “go” in the dark. Nurses even used a small flashlight when they came in to check my vitals. 

I had to walk right after surgery. Several times a day a nurse or a physical therapist or my daughters walked me through the hospital corridors. To make these walks I had to sunscreen as if I were going to the beach for the day, then shroud myself from head to foot with a sheet. I looked like a ghostly specter roaming the halls. It was October, right before Halloween, so at least I was in season. I’m pretty sure I scared the hell out of the other patients on my floor. 

Even when I was taken for testing and being pushed from floor to floor and tower to tower in my hospital bed I had to be fully covered. Read: Sheet over my head. I looked like a dead body headed for the morgue. 

Believe it or not, it wasn’t too bad having to walk immediately after brain surgery. I was deemed a “fall risk,” and I had the wristband and color-coded hospital gown to prove it. My oldest daughter, know for her penchant for bad Dad Jokes, said she preferred to say I was an “autumn risk.” (Insert groan here.) Adding to the danger of falling was the loss of vision in my left eye, no depth perception, no peripheral awareness on the left. Then add the sheet draped over my head and obscuring the vision in my good eye. Plus the dimmed lighting in the hallway to prevent the sunburn. I think I am painting a picture of a pretty sad walk (or a hilarious walk, depending on your sense of humor).

After the 48-hour sunburn risk was over and I no longer had to be sunscreened, shrouded, or in the dark I think the nurses and physical therapists were surprised to see I could actually walk without assistance. 

Who knew a risk of a severe sunburn would be part of my brain surgery experience? Don’t forget the sunscreen!

Doctors

Cancer Diary

Doctors

When you’re diagnosed with a brain tumor at 8:00 a.m. and are checked into the hospital 5 hours later, it’s difficult to research your illness, get a second opinion, or choose your doctors. Things were moving quickly and I knew that was important. 

It did occur to me that I had options. I have family in Houston and New York City. Everyone knows that M.D. Anderson and Sloan Kettering are the best cancer centers in the U.S., but we felt good about the care we could get in our hometown. Being home was best for us. We discussed other options, but knew any change of hospital would cause delays. 

I wasn’t quite sure how everything was happening so quickly. I thought it was just a ‘crap shoot’ as far as the doctors I was ending up with, but later learned my PCP was making the referrals for my medical care team. I feel like I got the A-Team. My little brother vetted the neurosurgeon and told me that if I’d had the opportunity to hand-pick a doctor, this is who I would have chosen. The neurosurgeon (aka BRAIN SURGEON - OMG, seriously, a BRAIN SURGEON!) was so kind and spent lots of time answering my questions and questions from my family. It was interesting to learn that his schedule was open for me only because his wife was also scheduled for surgery and they ran into an insurance glitch that caused them to postpone her surgery. Yes, even doctors have insurance issues. 

I didn’t meet the anesthesiologist until I was in pre-op. Another precious doctor. He introduced himself and told me I was going to be his mother-in-law for the day. His actual mother-in-law was having surgery at the same time, but because of their familial relationship he wasn’t attending her, but me. He promised he would take special care of me as his stand-in mother-in-law. I was touched. When my daughters were able to join me in pre-op, they asked me to make sure he liked his mother-in-law. In the operating room I asked and he assured me that he loved his mother-in-law. That’s the last thing I remember until I woke up in recovery. 

Crazy that one can have brain surgery and wake up in no pain. How is that even possible? I awoke in recovery to a conversation between my brother and the surgeon discussing titanium. I thought they were taking about golf clubs, but soon put it together and realized they were referencing the plate in my head! I was assured I would not set off alarms at TSA. 

I am so grateful to all of my doctors, and I have a lot. Every medical professional I have encountered on this journey has been a gift. From the CNA who left me an index card with inspirational music suggestions, to the neurology nurses who sat up with me during a 2:00 a.m. meltdown, to the social worker, nurse navigator, volunteers at the cancer center, all the way up to the “big-dog” oncologist and neurologist - everyone has been over-the-top kind and caring. 

I am full of gratitude for the healthcare we have access to in our own backyard. It is 3.8 miles from my house to the cancer center. It takes us less than ten minutes to get there, and there is no traffic. I cannot imagine having to deal with Houston traffic or New York subways or cabs to get to daily treatment. Unless I qualify for a trial at a different cancer center I won’t have the stress involved with being out of town. This means a lot to me and to my family. 

I feel a little like Dorothy in the Wizard of Oz when she realized that everything she wanted or needed was always right in her own backyard. 

We’re Going to Have a Fun Weekend, Dammit

Cancer Diary

We’re Going to Have a Fun Weekend, Dammit

I was released from the hospital for the weekend prior to BRAIN SURGERY, which was scheduled for Wednesday October 1, 2025. After lots of tests, another MRI, a CT Scan, an EEG, and probably others I can’t remember I got to go home to spend a few days with my family. My daughters and my husband had tagged-teamed the three days at the hospital with me. Now that we were being “furloughed” I was ordered to have fun. I have to say that when you are looking at a few days to live your best life before having brain surgery it is a bit daunting to come up with fun. 

So, what did we do? We went to Costco. Yep, Costco. We went up and down every aisle as a family group of five. We bought all the fun stuff, the ridiculous snacks, the necessities, and the not so necessary. Then we ate cheap, but delicious Costco hotdogs near the check out stands. That was fun! We also went to the fanciest restaurant for fancy food where I had my first glass of wine in almost three years. (I gave up alcohol in 2022 and one of the first things I said after my diagnosis was, “I gave up wine for this!”) 

    We watched movies. We watched the movie Arthur with Dudley Moore and laughed and cried. We ate tons of good food, I having decided that life was literally too short to worry anymore about my weight. We cried a lot, we laughed a lot, we tried to figure out the new medications I was now on, we worried about the surgery. But, mostly we did have a good weekend. 

My oldest daughter, who had flown in immediately from her home in New York, had a previous job at the Columbia University Library in the Oral History Department. She brought her fancy recording devices and over the course of her 10 days here we recorded 14 hours of my history. I felt like I was on a season of This is Your Life Jenifer Smith. She led me through my childhood, my relationships with my parents and siblings, my years of schooling, my love affair with my husband, my time as a young mother, my career, my friends, my extended family, everything. It was a beautiful gift that she was able to walk me through my fabulous life and record it for my grandchildren to one day have. But the best thing about it is now when I tell anyone that I have led a wonderful and full life and that I have no regrets, I have documented proof that that is true! 

There was a lot of serendipity that weekend. My little brother from Houston surprised me and came into town to be with us before, during, and after the surgery. My sister, also from Houston, organized a family text group to keep everyone apprised of my situation. She was also my gatekeeper, screening calls and messages. I was able to have a previously scheduled dinner with my close girlfriends to tell them in person what was happening and I had time to let others know of my situation before I went back into the hospital for surgery. 

By the time we had to report back to the hospital at the crack of dawn on Wednesday, October 1, I felt like I was wrapped in protective quilt batting. I had been nourished in body and spirit by the love and kindness of my family and friends. I was ready. 

Disco Ball

Cancer Diary

My Very Own Disco Ball on What Would be my Daddy’s 100th Birthday

On September 10, 2025 my father would have turned 100. Sadly he died at the age of 68. I turned 68 last November and I’ve been consciously aware that I’ve been given more years than either of my parents. My mother died at 57. When I turned 57 I dedicated that year to living my best life in honor of my mother; I went the whole year without alcohol, I said yes to anything involving family, and I relished time with friends. This year I’ve tried to do the things my father would have enjoyed had he lived beyond 68; I traveled, spent time with family, and tried to develop a few new hobbies. So, that’s my history with my parents dying young (ish) and why I’m mentioning the day my dad would have turned 100. That’s the day my life took a turn, that’s the day I got my very own disco ball. 

Let me explain. On September 10th I had a dermatologist appointment, so I had to get up, showered, and dressed a little earlier than my retirement life normally calls for. While in the shower I suddenly began experiencing a disco ball light show. Fabulous prisms of white light in my left eye. Even with my eyes closed the flashing lights did not cease. Was I having a 1970’s flashback? I was afraid I was experiencing what might be the beginning of a detached retina. I was unsure about driving, so my husband drove me to my dermatologist appointment, (which is the subject of a future story), and then directly to the office of my retinal specialist, where I was immediately ushered into an exam room. After an hour of extensive tests, photos of the  inside of my eyeball, and consultation with the doctor, it was determined that I was having ocular migraines. Wow, fun for me! 

In the meantime, my husband and I were in a pretty demanding training program to become CASA volunteers, which required a lot of reading and computer work. My very own disco ball was not taking a rest. I was experiencing what I now thought was an ocular migraine pretty often and for longer periods of time. And when I wasn’t having the disco ball flashing, I noticed that the peripheral vision in my left eye was gone. I figured this out at the grocery store when I panicked because my husband suddenly disappeared and he was just standing behind me and to my left. I soldiered on, but made another appointment with the retinal specialist, had another extensive exam, and still no concrete answers. I got in with my primary care physician and she couldn’t explain what was happening either, but she did order some additional testing that would take place the following week once I returned from a planned trip to Atlanta, Georgia to attend my goddaughter’s wedding. 

Flying to Atlanta by myself was an experience because I was now partially blind in my left eye and was still rocking the disco ball. I changed planes in DFW, navigated the Atlanta airport, met my sister at her gate, and got to Gainesville for the wedding. It was a wonderful weekend of festivities and family, but the flashing lights and diminished vision plagued me the whole time. I was worried about getting home by myself, and my sister even offered to fly home with me, but I made it alone - a feat I’m pretty proud of in hindsight. 

My fabulous PCP had me scheduled for an MRI and a Carotid Doppler when I returned home. The doppler showed nothing out of the ordinary, but when the MRI machine opened and the technician helped me out, he informed me that I had an 8:00 a.m. appointment with my PCP the next day. Well shit! That didn’t bode well. The next morning my lovely doctor had to tell me I had a brain tumor. By noon I was checking into the hospital and meeting with a Neurosurgeon. Things moved fast. All because of my very own disco ball on what would have been my daddy’s 100th birthday. 

The Snake

In 1963, when I was in first grade, we had an unwelcome visitor to our home. My mother was in the kitchen cleaning after she’d put us kids to bed, and my father was in the living room watching television. My mother said she heard my father say, “Carol, bring me an axe.” 

This was years before Stephen King wrote The Shining and Jack Nicholson creeped everyone out with his performance of the axe wielding crazed husband, so my mother peeked around the corner into the living room to see why a weapon was being requested. There was a snake in the house, coiled around the arm of my little wooden rocking chair. Instead of bringing an axe, she called the next door neighbor. Daddy and the man from next door wrangled the snake into a large glass jar with holes punched into the metal lid. 

The mystery of where the snake came from was solved when it was learned that the pet store on the next block had some snakes escape. Our wooden front door screen was warped at the bottom and the front door was open on this hot August evening. To quote my mother’s written account of the incident in a letter to her family, “That snake just came right in, without even knocking.” 

All these years later, I’m confused by why the boa constrictor was not returned to the pet store, but rather given to my then 10-year old uncle, Steve. Also, what happened to the other escaped snakes? 

In my mother’s letter she continues, “Steve has been wanting a pet snake all summer, so now he has his wish. He picks the snake up and lets it crawl and coil around his hand, arms, and around his neck. One night Steve was playing with the snake and watching T.V. - mostly watching T.V. Well the next thing they knew, the snake was gone and Mother, Sam, and Steve looked all over the den for it. Finally they found the ‘varmint’ hiding behind that big brass plate on the den wall.” 

This was just the first of many snake escapades experienced by my grandmother, aunts, and uncles during the years the snake lived with them.

There is an undated clipping from the local newspaper with the headline: Pet Boa Pops From Hiding. The article states, “A pet boa constrictor, lost for four weeks, tumbled out of hiding Wednesday, much to the astonishment of the Lewis Owen family, 3502 46th St. The two-foot-long snake owned by Steven Owen became lost about a month ago following a trip to Steven’s school, Christ the King. Wednesday Steven opened the door of the family car and the missing snake tumbled to the ground. Mrs. Owen, a teacher at Christ the King, said her son’s pet became lost when they were taking it home from school after showing it to Steven’s class.” 

What the article doesn’t say is that “showing it to Steven’s class” really means they took the snake to school to show his classmates how the snake was fed. I know this because once my entire Brownie Girl Scout troop met at my grandmother’s house to watch as a mouse was dropped into the dry aquarium home of the snake, as the snake froze, then struck the mouse with enough force to stun the poor little thing before it was devoured whole. The horrified Brownies watched as a bulge, that was the mouse, slowly made its way along the snake’s body. There is no telling how many girls were scarred for life on that afternoon. 

Another detail left out of the newspaper article is that during the month that the snake was living free in the car, my Aunt Gail was married to a Park Avenue New Yorker in a lavish Lubbock wedding. Many guests were ferried from the airport, to venues, and to hotels via this very car. My great Aunt Opal, a very genteel lady, would have run all the way home to Canton, Texas had the snake decided to show itself while she was a passenger. Just the thought of prissy Aunt Opal in close proximity to a snake has been enough to send me or any one of my family members into paroxysms of laughter over the last sixty-years. 

My Aunt Gail was only slightly less squeamish about reptiles. A tale told on her was about her brothers, my uncles Sam and Steve, wrapping the snake around the front door handle and then telling Gail the snake was loose and missing in the house. Gail went berserk and ran out of the house, through the front door, grabbing the snake in the process. One of Gail’s sisters, my Aunt Mary said, “When she realized she had grabbed the snake, her life as she knew it was over. As I was coming home from school she was on the front lawn screaming, running and jumping and pulling on her hair.” 

As you can tell, we had a lot of fun having a pet snake at my grandmother’s house. When school was in session my grandmother kept the snake in a terrarium in her second-grade classroom at Christ the King School. Over the years I have met many of her former students who commented on what an interesting classroom my grandmother kept. Sadly, classrooms such as hers are a thing of the past. 

During summer vacations and holidays the snake came home. Every year the rocks holding down the lid of the terrarium got larger as the snake got bigger. Eventually the snake was too big to be contained. After many Houdini-esque escapes and recaptures, my grandmother gave the snake away. She said she was afraid it would eat one of her grandchildren. 

I have many memories of my grandmother and her home on 46th Street. The snake and the antics of my aunts and uncles are all part of a beautiful tapestry that made up my childhood.  

Rumination While Deboning a Costco Rotisserie Chicken

How was my Costco total $352?

How much does a raw whole chicken cost? Surely it’s more than $4.99. How can Costco afford to sell their rotisserie chicken so cheaply? It’s just a ploy to get you in the door. Come for cheap chicken, stay for the expensive nutritional supplements, laundry detergent, dog food, and giant tubs of mayonnaise. 

Are these the chickens that were almost out of date? Chickens they didn’t sell fresh? What’s the shelf life on this chicken?

My dad once told me my mother could get more meat off of a chicken carcass than anyone he knew. From anyone else I’d suspect a double entendre, but he meant it as a sincere compliment. 

As a child my mother could catch a chicken in their yard, break its neck with one quick swing, dress it, and cook it for their family of 12. This is probably why she was so good at picking the meat off the carcass. 

Why do I keep using the word “carcass?”

Did my mother ever know the luxury of a rotisserie chicken? I’ll have to ask my sister if rotisserie chickens were a thing prior to 1991 when our mother died. 

I’m saving the chicken bones in a ziplock bag that I’ll freeze until I have enough to make a batch of bone broth. I’m so frugal. Then how did you spend $352 just now at Costco? 

My mother always said her favorite piece of chicken was the wing. There is little to no meat on these chicken wings! I was a grown-ass adult before I realized my mother didn’t really favor the wing, she just said that so the rest of the family could have the good parts. 

Warm chicken fat is gross. I wonder if it’s a good moisturizer for my hands? Shit, I forgot to buy lotion at Costco. 

How much chicken salad will this make? We may be eating chicken salad all week. What else can I do with this chicken? 

My mother would know. 

Dear American Airlines

Dear American Airlines,

Your flight attendants say, “We know you have a choice when you travel, thanks for choosing us.” Well, dear American Airlines, sometimes we don’t have a choice. Like when I’ve already purchased a ticket and you delay the flight 5 hours (FIVE HOURS) and there’s no way I can catch the last connecting flight home. I have to either wait and hope: a.) the plane I’m supposed to get on arrives from DFW to LaGuardia at some point in the next 5 hours (FIVE HOURS), or b.) the part needed to fix the mechanical issue arrives from JFK and the said mechanical issue is repaired at some point in the next 5 hours (FIVE HOURS). These were the two stories I received from your gate agents when questioned about the 5 hour (FIVE HOUR) delay. 

Let me start at the beginning. I left home 6 days earlier for work travel, flew from the conference in New Orleans to New York to spend the weekend with my daughter, son-in-law, grandchildren, and Lucinda Williams. (Okay, so I only spent a few hours with Lucinda at her show Saturday night.) I got up early on Sunday and had to walk blocks away from my daughter’s apartment to get an Uber because the streets were closed due to the Brooklyn Half Marathon. An eighty-dollar Uber ride got me to LaGuardia in plenty of time to check my bag, go through security, grab a coffee, and get to my gate. As soon as I sat down my phone and every other phone in the gate area began dinging with a delay notice; thirty minutes, no problem. Ding, ding, ding, another delay notice; an hour, no problem. Ding, ding, ding; 3 hours, what the hell? I was number two in line to speak to the gate agent. Rebooked, confirmed on last connection, no problem. Ding, ding, ding: 5 hours (FIVE HOURS); potential big problem. I could only make my connection if everything went perfectly. 

Sitting at the gate with all of the other disgruntled passengers a mass hysteria began to grow. Everyone was mad. No one knew what was actually happening. The gate agent was so overwhelmed with rebooking passengers she gave up and left. Anyone wishing to rebook had to go to a rebooking kiosk on the other side of the airport. The scuttlebutt at the gate was that the flight would be canceled and we were all screwed. At this point, even with my rebooked and confirmed ticket, I decided to follow the crowd to the other side of the airport to find out what the actual hell was happening. 

I got in line behind the eighty or one hundred and fifty other passengers trying to rebook. I waited in line for almost 2 hours. When I first arrived there were four gate agents assisting, by the time I got to the front of the line there were only two. The nice young man who assisted me confirmed my fear that I would most likely miss the last connection home. He offered to rebook me on a flight that could make my connection at DFW via Raleigh, North Carolina, but before he could push all of his computer buttons the flight to Raleigh was delayed. There was no other option but to fly the next day. The nice young man scheduled my flights, put in a request to retrieve my checked luggage, issued me two car service vouchers, and a twelve-dollar meal voucher. 

I was semi-happy. Very irritated about the situation, but at least I wasn’t going to waste anymore time at the airport, or so I thought. In the meantime, the customer eight-inches to my right was in the throes of travel rage. The entire time I was being taken care of by the nice young man, my fellow delayed passenger was being assisted by a nice young woman. My fellow delayed passenger was not anywhere near semi-happy. He was pulsing vein in the forehead mad. He was I’m not leaving this kiosk until I speak to your supervisor mad. He was I want financial compensation and I want it now mad. He was I’m video recording this on my cell phone and posting to social media mad. The nice young woman was I’m calling Port Authority and having you arrested mad. Wow. I was more traumatized by my fellow passenger than I was by the five hour (FIVE HOUR), now actually a twenty-four hour delay. I was shaking when I left the scene of the rebooking. It could have been because I had missed lunch, but I’m pretty sure it was because of the rage-fueled fellow delayed passenger.

Off to claim my checked luggage, hop in a car, and get back to my daughter’s apartment. That sounds so easy, doesn’t it? Wrong. Baggage claims office informs me that it will take forty-five minutes to an hour for my bag to come up. I had the claims agent double check that the nice young man had done everything correctly to request my bag so I wouldn’t be waiting an hour in vain. Check, everything in order. I wait an hour; no bag. I go back to claims office, speak to a different agent who tells me my bag is already on a plane. On a plane to Raleigh, North Carolina. She can put in another request, but it will take forty-five minutes to an hour. I decide to forgo clean clothes, toiletries, and medication just to be on my way. 

I call the car service, tell them I’m at LaGuardia and need a ride. No problem, the driver will call when he arrives, in about forty-five minutes to an hour. Seriously. The driver finally calls, I go out to the car, there are four other passengers in the vehicle. I’m thinking, dear God, we’re going to be driving all over the five boroughs delivering passengers. The driver speaks no English, but I pick up that we are going to JFK Airport. What? I say what about my trip to Brooklyn? I have to call the service, have the driver circle back to LaGuardia and drop me off where I once again have to wait forty-five minutes to an hour to get my ride. Oh, and the car service dispatcher cussed me out and told me that I requested transportation to JFK. Seriously. And, I still haven’t had lunch and it is late afternoon. 

While waiting on the second car to come pick me up, on a whim I go back to the baggage claims office and there is my bag. In the office. Not on a plane to Raleigh, North Carolina. 

After another forty-five minutes to an hour I call the car service and am told they haven’t found a driver to pick me up. Seriously. I take a taxi from the airport and spend another eighty-dollars to get back to my daughter’s apartment. Where I proceed to have a nervous breakdown crying jag in front of my horrified son-in-law and grandchildren; my daughter is used to it. 

So, dear American Airlines, I blame you for my horrible day. I would like to say I will no longer be choosing you when I travel, but like I said in my opening paragraph, sometimes we don’t have a choice. This is what travel has become these days. We just have to go with it and try not to get arrested.