A Sui Generis Diagnosis

A Sui Generis Diagnosis

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July at Medical City Fort Worth

I came home from work on Monday and he was in bed at 5:30 p.m.  He slept through the next two days before going to the doctor to learn his only unusual symptom was a low-grade fever and slightly elevated white blood cell count.  The temperature outside in Texas was over 100 degrees but he shivered in jeans, t-shirt and a fleece jacket inside the house as well on the car ride back to the doctor two days later.  He continued to sleep most of the day and all night.  He ate very little.  He now had a temperature of 101 degrees and a pounding headache.  The doctor ordered another blood test but we would not get the results until the following Monday.  This was Thursday.

Friday, I was planning a trip to Kansas City to visit my daughter.  My flight was early in the morning so I woke up to pack and prepare to leave when I found him downstairs in a spare bedroom curled up in a ball in bed, under several layers of blankets.  He had turned the air conditioner off and the temperature in the lower level of the house was over eighty degrees.   I told him I would not leave him, as he was too sick.  I cancelled my flight, called my daughter and told her I was taking him to the doctor again.  We ended up in the emergency room at Medical City Fort Worth Saturday morning as his condition had deteriorated and his body was aching, his temperature spiked to over 102 degrees overnight.  He could barely walk into the waiting area.

The staff at the hospital quickly did an assessment and speculated that he had meningitis.  They ordered a MRI and prepared to do a spinal tap.  The spinal tap was cancelled after they found from the images that he had two masses in his brain, most of it laying on top of the brain but some had seeped into the ventricles.  The initial diagnosis was brain cancer by the emergency room physician.  They ordered more testing to determine the source of the cancer as they speculated it had metastasized from some other organ in his body like the pancreas or liver.

Several hours later into Saturday night, we learned it was not cancer but some sort of infection that initiated from the lung and traveled to his brain.  The infection ate a hole in the left lung the size of a quarter. This diagnosis was made by the neurosurgeon.  RM had several more procedures done over the night including a more exacting MRI to assist the surgeon.  At 5 a.m. Sunday morning, the surgeon and his team met with our family as C2 and her husband traveled all night to get to the hospital in time to see RM.  The neurosurgeon shared the plan for brain surgery or what is called a craniotomy that they would perform that morning.  We knew it was serious when so many specialists came in on their day off to perform the procedure.

We were so elated it was not cancer but the surgeon had to firmly remind us of the severity of the surgery and the risk of the infection spreading from the brain into his blood stream. We signed the consent.

We felt positive going into the surgery as we had the chance to talk to the entire surgery team and each one assured us of the surgeon’s abilities. During the middle of the night, I quickly did an internet search to learn the surgeon earned his medical degree from the University of Virginia, did his residency at Baylor and studied at M.D. Anderson.  The anesthesiologist shared with me that her husband had a brain tumor, which was successfully removed by this surgeon. She reminded us that getting through surgery was the start of our journey back to our new normal.

He came out of the surgery with two large incisions in his skull.  One incision was located on the left forehead and another on his head in the back secured with staples and stitches. He looked like pictures you see of people blown up in Iraq. He spent nearly a week in intensive care when we learned after several days of lab analysis that he had inhaled a large amount of bacteria called nocardia.  Nocardia lives in soil and water.  We do not why RM’s body could not fight the infection off.  The doctors used words like a one-off occurrence, an anomaly, or what I call – of its own kind – sui generis.

For six weeks, he took IV antibiotics that left him unable to eat.  He survived on water and probiotics. We now journey with RM through therapy, oral antibiotics, doctor appointments, weird side effects, and returning to the activities we enjoy like yoga, walking and just piddling. Thank you to all of our family and friends for your support! So blessed to have RM with us. He is our sui generis.

 

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October on our way to a concert

 

 

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Mindfulness My Friends

Mindfulness My Friends

Lately, I committed to a home yoga practice in a small space I created in our bedroom on the second floor of our little cottage on Ashland. The practice is usually about 30 minutes long and it helps me focus, stretch and reduce my anxiety levels caused by just regular life issues.  

Wake up for yoga

I like Yoga with Adriene with her free yoga videos, most recently completing her Dedicate 30 Days series which I highly recommend. Adriene is quirky and fun and she too has a dog that likes to join her in the morning ritual. You can find her at this link: .https://yogawithadriene.com/

This week-end, I had the window open a little crack and I could hear a bird chirping her wake up call to anyone that would listen. I listened. I had a cup of hot tea beside me on the mat, along with a little blankie, a lit candle, and it all was so nurturing.

I was slow to pick up on the yoga craze even though my father was a champion of yoga for years. It was how he dealt with severe lower back pain as he aged. I added the practice with my trainer’s encouragement in order to increase flexibility while I was building strength and endurance through regular exercise under her supervision. If you need a great personal or small group trainer, I highly recommend Jenny at Mindful Mule. http://www.mindfulmule.com/

Yoga is really the art of waking up. Yoga offers up a way for us to see a world that is working for us instead of against us.  Yoga reminds me that everything is connected. I am learning to breathe for the first time but still need a lot of practice synching up my breath with the movement. It takes practice which is why I have committed to an almost daily time on the mat.

Let’s do this.
Love, Kansas Style

Love, Kansas Style

 

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My father showed love in his actions. You had to look for it.  My dad rarely, until he was much older, told me that he loved me in words except in his terrible handwriting, scribbled on birthday cards.  I think he expressed his love for me much more directly than he did for my brothers as he was the type of dad that believed in toughening up the boys and relaxing just a bit with his girl.

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My  brother, Mike,  his wife, Debbie and me. My brother was able to say I love you.

My dad expected me to mow the yard, learn to drive a truck, fix flat tires and shoot ten free throws without missing.   I don’t know what he expected of his boys, but the bar was higher, for sure. Being soft or in touch with his feminine side was not in his character except he liked to dance the waltz and the cha- cha- cha- and he could mix up a mean Caesar salad dressing from scratch.  OK, he was conflicted and raised a Baptist so I give him a bit of a break.

My dad was homophobic which unfortunately got worse as he aged.  The first time he commented that a man was “light in the loafers” was when I was with him in a men’s department store in Topeka and he was trying on a yellow leisure suit with white stitching on the lapels.  The ultimate 1970’s American kitsch in male fashion. The presumed gay man was helping to fit this unfortunate suite to my father’s 6 foot 4 inch frame.  I was along for the ride as it was summer and my mom was at work.  In my fading memory, the sales guy did seem to take his time measuring the polyester-infused inseam on my dad’s long legs but I think he was only going for accuracy not intimacy.

My dad had a commanding presence with his tall. lean frame and booming voice.  He had a good head of hair that turned gray in his early 30’s. It suited him well for his career as a high school principal and public school educator — straight out of central casting.

My brother one time commented that dad had a “big man on campus” complex and he was probably right.  Dad played basketball in high school in the tiny railroad town of Newton, Kansas, when they were in contention for state champions nearly every year. His picture was plastered on quite a few small town newspapers back in the day.  He played ball at a state university, went on to serve in the Air Force, and then started his career as a respected teacher, coach, counselor, principal and administrator in small towns in Kansas.   He was a big fish in a little pond and he loved it.

My dad was super affectionate with me, as he read a self-help book that told him that his role in raising a healthy girl was to provide praise, support and unconditional love in order to give me the gift of confidence and high self-esteem.  He actually told me this when I was a teenager.  What dad tells their kid this?  So he hugged, squeezed, and rubbed my shoulders but never did he actually say the words “I love you” until he was sick and dying.  Yes, I cried.  He gave me tons of compliments about how I dressed, or my cute, new hairstyle, my good grades, my “people” skills as he called it or on how I “was a natural” at raising his grandkids just no verbal commitments about love.

His parents, my grandparents, didn’t say “I love you’s“ either.  They were very practical, thoughtful people who valued education and did not suffer foolishness.  They were caring but I think they thought if they said, “I love you” often it became meaningless? Or something along those lines.  It was inherent in our family’s culture.  Maybe it is a white, Protestant, Midwest characteristic? Growing up, I did hear some friend’s parents telling their kids they love them before we skated out the back door for small town fun but not very many. And rarely did I hear other dad’s using loving salutations beyond a grunt or an eye roll.

As parents, we are not going to get it right all the time.  But I do think we need to tell our children in words, that “we love them”.  RM and I should probably say it more often to our three C’s.  RM is much better at expressing his feelings than my dad or me for that matter.  It is probably one of the reasons he is so attractive to me. I love it that he cries along with me as we watch sad movies or how he tears up when he says, “good bye, I love you” when one of us leaves home for an extended time.

So, this Father’s Day, if you are lucky that your dad is with us, please try to utter, out loud, the words, “I love you”, to him even if it is excruciatingly painful for the both of you.  It gets easier, the more you say it, and in my opinion, no less meaningful if said a lot.

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1979

1979

1979.  That is the year I graduated from Holton High School with a class of a little more than 80 students, the same year as the release of the Sony Walkman.  Mobility — the idea that you could take music with us – was HUGE. The music channel, MTV, launched just a few years later — who remembers listening to the release of Video Killed the Radio Star? It was so cool.

We were all about the music as a class. We listened to My Sharona by The Knack, and Hot Stuff by Donna Summers. Songs by the Bee Gees, Blondie and the Village People’s enduring YMCA were hits in 1979.  We loved country music tunes like Eddie Rabbit’s hit,  Every Which Way but Loose and some of us were into hard rock by Led Zeppelin, Judas Priest and AC/DC. We snuck into the local club, the Jolly Troll, to listen to local bands close up and personal. Many of us turned 18 so we were legal to drink beer in Kansas at the time.  Our favorite was Coors.  The music sounded better with a cold can of Coors in my hand.

We sang, danced and acted in school iconic musical productions of West Side Story and South Pacific.  We played music in our cars, many decked out with an 8-track, cruising around the square.  At lunch, jammed into the old gym for some free time, John Denver sang Rocky Mountain High from a delapidated jukebox.

We whistled along to KISS FM radio from Topeka while swimming at the city pool on lazy summer days.  Some of the last lazy days for most of us as we launched into adulthood.  We Are the Champions, by Queen, was released in 1977, and the pep band blasted that catchy anthem repeatedly during warmups and timeouts at boys basketball games.

Our class had a diverse set of interests outside of music and many of us played dual roles.  We marched in the band, sang in the choir and competed in sports.  We held leadership positions both at school, in our churches and other affiliations preparing us for our futures in science, engineering, business, logistics and a wide variety of fields.  We were multi-taskers.  We almost all worked outside of school either paid or unpaid helping on the family farm, checking groceries or filling up gas tanks.  No job seemed too small to us.

Next week, we celebrate our 40th reunion together as a graduating class.  I am unable to attend this year but from the social media chatter, it looks like there will be good attendance over Memorial Day with our class featured on a float in the local parade as well as a dinner and an after party.   Mostly, we just spend time catching up and sharing stories. We often laugh about embarrassing tales from those days that we would not share with anyone else except our high school friends.  Likely, because our current friends cannot relate or do not really care as much as our high school friends about our stories from back then.  Who would you talk to about the thrill of victory and the agony of defeat after making it to the State Basketball Championship back in 1979? Alternatively, that time, some classmates snuck into the city pool and skinny-dipped?  Some of these stories certainly change and get better over time.  Hell, who can remember at our age?

We are on the cusp of 60, trying to hold off the inevitable aging process so that we can stay active, travel and enjoy life after so many years working 9 to 5 or dusk to dawn.  I like to see ourselves now after all these years as joyful people who are at peace with who we are and why we are.  Our foundation was first built in our childhood when the importance of purpose, interconnectivity, selflessness, and service were first taught and demonstrated to us by our families, our teachers and our community.  In retrospect, our lives speak for themselves well after we are gone.

So, this is what 40 years since graduating high school looks like for each of us. Who knew? So, raise your Coors cans high and celebrate, because my classmates from 1979, we are all champions of our own little neck of the woods.

Below is a card I found tucked inside the jacket holding my high school diploma. My main takeaway from this rather stuffy pronouncement, 40 years into the future is, yes, Principal Versch you are correct: ere life has flown.

 

Appointment Anxiety

Appointment Anxiety

QCurrently, I am on an every six-month schedule for checkups with the oncologist. Although these are supposed to be routine visits, I always get anxious. This will be the tenth year of going to these appointments since I received a diagnosis of breast cancer back in 2009.

Is this picture anxiety inducing?

You would think I would get use to the blood work routine, the questions, the sterile environment, and the poking and prodding of my body, but I don’t.  This year, I graduated to the long term survivor club with the clinic so now I will only see the nurse practitioner unless test results are not normal. Please let them be normal.

Sometimes, I try to visualize the worst case scenario so I am prepared emotionally but then I think, just focus on the positive, you idiot.  You feel great, you are taking care of yourself, this is out of your control.

Another step I took this year to ease my anxiety is to schedule my oncologist appointment and my wellness exam with my family doctor all on the same day.  Thinking to myself, that getting it all done on one day would minimize the number of anxious days leading up to the appointments.

To avoid bone loss, one of the common side effects of a battery of chemo treatments, I receive an infusion of a medicine through an IV to help reduce any additional bone loss. To receive the medicine, I have to enter the same massive, open floor plan infusion room that I first got chemotherapy several years ago. No problem, right? PTSD my friends.

This time, there was a man in his 30s seated across from me receiving the drug, cancer survivors call, The Red Devil. Aptly named as its victims experience hair and nail loss and extreme nautiousness and fatigue. The young man  has his hands in a bucket of ice to try to save his nails while his young wife, rubs his neck gently fighting to not cry as her huge brown eyes fill with tears. I wanted to walk out then and there but my arm was also tied to an IV pole. I visualized myself in Rome looking out over the cityscape and took a deep breath, tears in my eyes too.

Another tactic I tried this time to ease anxiety is to do a 45 minute at home yoga practice the morning before the exams and I found myself a little more relaxed.  At least at first. Learning to breathe helps. I also talked about my fears more with friends at work and told myself that the anxiousness I am feeling is natural and understandable based on my past experiences at the doctor and in the clinic. Also, I know the doctors want what is best for me.

It helps that Dr. Young always gives me hug at the end of the exam, she seems as releaved as me, as I skip out the clinic doors with my results of cancer free. She stays behind and treats us all everyday. I get to go home to my loved ones and try to live my best life post cancer. I hope that I will see that young man again in a year or so and we can chat about what it’s now like to experience appointment anxiety as one of the lucky ones just doing our best to handle life after a diagnosis of cancer.

 

 

Fort Worth to Hochatown

Fort Worth to Hochatown

Hochatown is a lumbering town just outside the entrance to the Beaver’s Bend State Park located in southeastern Oklahoma just over the Red River from Texas. Hochatown has the customary OK casino and a pretty good pizza place, called the Grateful Head. I think why it has such a devoted following is for the divey patio, live, local music, good service, and extensive beer menu. The pizza was just average but then I am spoiled by RM’s wizardry with the pizza peel.

 

Grateful Head

It took nearly 4 hours from the Fort, road tripping to our final destination, Cabin #4. We stopped for a quick bite at the Paris Bakery located — you guessed it – in tiny Paris, Texas. The bakery serves killer artisanal bread so I snagged a loaf to add to my camping pantry. My pantry is stored in a green, plastic tub (it formerly housed holiday decorations) for easy access and unloading when we get to the camp site and includes a set of utilitarian pots, dishes and utensils picked up at local Dollar Generals out of necessity. Cautionary tale: Not all cabins are equipped equally.

We don’t like to eat off paper or styrofoam even when we are camping. We do so more from a POV of civility, imbedded in both our heads by our parents, than ecology.

Cabin #4

We arrived early afternoon of Good Friday and checked into the cabin at the main office. Our cabin was a studio with a little kitchen, bathroom with shower and wood burning fireplace. We then toured the exhibit at the heritage center featuring local artists working with different types of wood, native to Oklahoma. Tip: to get a cabin at popular national or state parks, you need to plan your trip out 9-12 months.

Under the spillway

For the last two years, in celebration of my birthday and Earth Day, we elected to get out in nature and support the preservation of our environment. This year, the Easter week-end was beautiful with temperatures in the 60’s and 70’s and so much glorious sunshine. We hiked several trails, wiggled our toes in rain-fed streams and stumbled onto a little trivia that the Beaver’s Bend State Park is not named for the semi-aquatic rodent as one might presume but for the family with the surname, Beaver, who donated the land to form the park. The family home is gone but the foundation is located near one of the trails inside the park. Go see if you can find it! Or find a local trail or park to savor the fleeting springtime temperatures of Texas.

Broken Bow Lake

 

 

Rome Reflections in Spring Time

Rome Reflections in Spring Time

Every conversation between Italians sounds like a squabble to C2 and me. We dodge european smokers idling outside entrances to bistros and major tourist attractions.  We look up lung cancer statistics for Italians and learn it is alarming especially for youth.  They too have embraced the foolish electronic cigarette craze.

We walk at least nine miles every day over cobblestones, up ancient, steep stairways made of  sedimentary rock, around the edges of a gaggle of tourists and away from pesky hawkers pleading with us to part with our euros and buy brightly colored, selfie sticks, all the while sheltered from the warm, spring time sun by rows of suessical umbrella trees.  Pink cherry tree blossoms are puffing about below our flat windows but surprisingly we see few daffodils or tulips, only an occassional forsythia with bright yellow buds lining a walkway.  The sycamore trees leaning over into the Tiber River have not yet budded out. The terrain reminds me of the Texas Hill Country with the seven hills circling the heart of Rome topped by a rocky, arid soil supporting still to this day, the ancient ruins of the Forum, Colosseum and other Roman and Greek architectural antiquities. The sunshine is so bright and warm and it is only March. What must July be like in Rome?  I forgot my sunglasses and instantly regret it.

Every where are shops offering pizza, pasta and gelato options but few other cuisines are found in Rome much to our surprise.  The best pizza we found was in our neighborhood of Prati at a tiny little place called Pinsa ‘Mpo offering 21 different varieties including dairy free options which is challenge to find in the land of cheese.  We found a local bistro that served superior pasta dishes as well as seafood options which helped to provide some variety to our diet.  Shrimp stuffed squid and seafood salad were our favorites.  One memorable cool day, we sipped mushroom soup under the awning of a cafe, curbside, watching a couple on a Vespa cruising nearby and families with babies bundled up against the brisk weather.

I tasted gelato — rosemary and honey, pistachio, and biscotti –  all to rave reviews.  What’s not to love about a cup of cream in the afternoon to soothe the aching muscles of a tourist calves?  What’s not to love about inexpensive but good quality house wine and a nice meal to cap off the day?  We did all that and more.

We visited a farmer’s market showcasing local and fresh options called, Mercato dell’ Unità,  housed in a neo-classical building about half-way along the stylish shopping street Via Cola di Rienzo, in the Prati district near our Air Bnb.  It has everything to sell from fruits and veggies to meat, fish, cheese and household items.  We shopped here for our dinner one night and prepared steamed artichokes (they are in season now) along with chicken and spicy, chicory salad prepared from the tiny cooktop in our eighth story rented flat.  Oh, yes, we added a crispy, warm baguette with fresh butter as well to our menu which we called dessert.

We took a cooking class from a local chef one evening, then toured Pompeii and the Almalfi Coast during a fourteen hour day trip with a group of sixteen via Viator Tours.  We scaled the stairs to the top of the Saint Peter’s Basilica to peer out across this great city.  Early on the first morning of our trip, we toured the Vatican Museum and sneaked into the Sistine Chapel before the crowds to marvel at Michelangelo’s most famous work of art.  The ceiling painting tells the story of the book of Genesis through his artwork showcasing his skills, capturing the human form, as well as his resilient painting on his back over nearly four years.

C2, our navigator through the narrow streets of Rome, as well as the key holder to the cyber locks to enter our flat, successfully navigated us to various neighborhoods, city centers and meetups on time and without delay.  We even made our way through Dublin airport on St. Patrick’s Day!