Spoke at an empowered women leaders conference today. Was amazing!
I am still experiencing issues related to the earlier brain surgeries. Nothing that seems all that problematic to me but things that needed to be addressed.
Incredibly we are coming up on four years since the original brain tumor was identified. That tumor was treated through two surgeries. We are not done with that one but have had more imminent issues that need to be addressed. The first of these surgeries had no noticeable side effects. The second left the left side of my face paralyzed and me without a middle ear. The removal of the middle ear meant the vestibule was gone and all things related to balanced had to be relearned. Additionally, I am completely deaf on that side. The paralysis has meant the left eye does not work as it should. Despite these new adventures life has been good, allowing for continued legacy moments.
The original plan was to treat the remainder of the tumor with radiation, as the piece that remains is wrapped around the nerve for swallowing. Before we could move forward with the radiation I was diagnosed with an unrelated cancer. This aggressive, malignant cancer took precedence over the benign brain tumor. The only frustrating part of the cancer treatment was the insurance company had the ultimate say in my treatment. They disagreed with the progressive treatment the doctor recommended and insisted I go with the tried and true variation. The newer proton radiation does not damage the surrounding tissue, the older radiation treatment does. Since the insurance company holds the purse strings, they left us with no choice. The lung and muscles in the surrounding area are starting to show the expected damage.
But on a more positive note – I have a brain MRI done every six months to monitor the meningiomas. There are a big one and several little ones. One of those little ones started to grow. I know that sounds like a bad thing; however, since we caught it so tiny, I qualified for gamma knife. Gamma knife is by far the coolest medical experience I’ve had. It is effectively, outpatient brain surgery. We left our house at 6 am and were back by 3 pm. It’s actually not surgery, in that there is no anesthesia and no cutting. It’s pinpointed radiation that zaps the tumor.
The most difficult part of the facial paralysis has been that my left eye doesn’t blink spontaneously. It’s getting better (SLOWLY) but not without incident. I’ve had several infections, several very serious. Drs Rutzen and Hanna have been amazing in their care for me. I suspect I could contact them any hour of any day and they would respond. They always go above and beyond when treating their patients. Most recently the cornea in the problematic left eye sprung a leak while we were traveling. Before we knew what was wrong, they set up a tele visit for me. The next day showed no sign of improvement. After an emergency visit with a local eye doctor and a trip to the ER, we all decided best that I get home as soon as possible and get back under their care. This included daily monitoring, while we set up for a cornea transplant. This also was outpatient surgery.
A couple of significant legacy moments – outpatient brain surgery and outpatient transplant surgery.
As the child that made me a mother celebrates her birthday, it’s given me pause to reflect. So many birthday celebrations over the years. I was never big on parties, particularly the present requirement. We had our standard group we would hang out with, so it was always the same folks at all the birthday parties. Two of us were single moms, so the budget didn’t have room for presents that would quickly lose their appeal. The moms got together and made a pact – no gifts – just a party to celebrate with friends.
Over the years, birthdays have caused many legacy moments. Bowling parties were particularly fun, as they would put cushions in the gutters, so there was no such thing as a gutter ball. Most were home parties, always a fun time. When we realized going somewhere meant someone else cleaned up the mess. More and more of the parties were at a location. As the girls grew, they were able to pick the theme and location of the party. I believe it was my first born’s eighth or ninth birthday that I ended up canceling before the invitations went out. At this point, I do not recall the behavior that warranted such drastic action. As the date approached, she informed me that she had verbally invited the entire class and several indicated they would be there. We went to the roller rink, where the party was originally planned to be. Much to my surprise, several of her classmates and parents were there. Indeed, a legacy moment.
I have been twenty-seven for so long, I can’t imagine being any other age. I’m not sure why I settled on twenty-seven. I know it inadvertently started around twenty-four. Someone would ask me how old I was and I would say twenty-seven, truly believing I was. Roundabout twenty-nine, it became a thing and I would just celebrate anniversaries of my twenty-seventh birthday.
There have been very few times I’ve been aware of getting older. The first was when my firstborn turned ten. There was something about having a child turn double digits. The youngest when my baby graduated high school. I distinctly remember walking around the base in whiting field and thinking we will be gone from here before I need to worry about the quality of the school district. As the younger one was getting ready to graduate that memory came flooding back and I realized in terms of my children, I would never have to worry about school districts again. The third and final time I was aware of my age was three years ago when the issues with my eye began. The eye doctor I was seeing realized I needed a cornea specialist. He called the best guy in town. He started the conversation with – “I have a fifty-eight-year-old woman here.” Many thoughts ran through my head, the final one being **** he’s talking about me. I feel truly blessed that at my age there are only three legacy moments that made me feel aware of my age.
Growing up we never had a housekeeper, with eight of us there was always a chore list of who was responsible for what. As a single mom, I found it more of a necessity than a luxury. Over the years I’ve had some amazing housekeepers, some with interesting quirks.
When we lived in Southern Maryland, I had my first experience with housekeepers. I forget how we found her; we had an amazing woman that would clean up my kids’ trails in addition to the tasks you would expect. Trails were the expression that had emerged to describe belongings that had been left all over. Trails quickly identified all the spots in the house that they had been to. For instance – backpacks on the floor by the front door, potentially followed by a coat, and pieces of the school uniform, by the time we got to the bedroom it would be whatever outfits had been tried on. Then various trails of snacks that were tested, books that were perused, and games and toys that were brought out. Picking up trails was no small feat. Additionally, if I left something prepared for dinner with the time and temperature it was to go in the oven, she would start it for me.
The house we lived in at the time had electric baseboard heat. It was nice that you could control the temperature in each room. The downside was the heat was HOT. It meant you had to be careful about how close things were left to a heater. For instance, I left a trash bag sitting near the heater in the kitchen. When I picked it up to take it out the heater had melted a hole in the bag and the contents quickly spread across the floor. I never was able to get this across to the housekeeper how hot these heaters were. In cleaning up the trails a white stuffed teddy bear ended up sitting on the heater for too long. The bear had a brown streak from its butt to its ankle. From that day forth it was known as diarrhea bear.
When we moved to Annapolis, we tried several commercial services. These didn’t work well for us as we missed the personal nature of the independent operator. We finally found one we liked. Again, I don’t recall her name. But again, she was inclined to do the little extras that made the relationship magic. That is until that fateful day. I was training to run my first marathon and had had a particularly bad run. When I returned, she had rearranged my kitchen to make it easier to clean. As you might guess, my reaction was far from positive. I opted to shower and cool down before moving forward with my initial reaction (fire her). The shower and cool down time got me over the bad run but did not change my mind about the kitchen. You just don’t rearrange another person’s kitchen. I called and left a message for her not to return.
The next housekeepers were adequate but unremarkable until we met Karen. Karen was effectively a member of the family. The things she did for us are too numerous to mention. Just before COVID, she was diagnosed with lung cancer (years ago she’d beat cervical cancer). With COVID we have taken over the cleaning. Sadly, Karen lost the cancer battle. Heaven has an amazing angel but we miss her deeply. Knowing her has left me with infinite legacy moments.
In general, I don’t remember my dreams, but when I do it’s typically because I have woken into them and start acting them out.
My earliest memories of these took place at the shack. I’m also told there was a sleepwalking incident where I made my way out to the end of the dock, stood for a while, then went back to bed. I digress, as that is one, I don’t remember.
The ones I do remember. I had been out jacking with my mom. Jacking is known as eeling in some circles. You go out after dark in a small boat (we used sharpies – as the flat bottom allowed access to more places) on low tide looking for eels. When you see one, you spear it and toss it in the boat. I didn’t catch anything and I was so scared of the eels slithering up my pant leg that I sat with my knees tucked up under me so they couldn’t get in. Curled up in the top bunk, I must have been dreaming about the adventure as I called out to my mom with great enthusiasm, I bolted upright. Sure enough, I hit something – my head on the ceiling.
After another jacking adventure. I became distinctly aware that my brother Joe had left me in the sharpie. It was pitch dark so I was afraid to leave the boat and work my way up to the house. I whispered after Joe to come back, as I whispered, I reached out my hand, touching the wall. It took a minute but ultimately, I realized I was in bed not in the boat.
Then there was the time I was working on the play. I was sitting on something and was asked to move as it needed to be put out on stage. As I was attempting to slip off it, it began to rise and rise. When I hit the floor I woke up, realizing it was just a dream. And the sensation of the floor slipping away was just because the bed I slept in was high off the floor. Like a top bunk.
Most of the times I wake in a dream it is fairly mundane. I’ve lost count of the number of times I’ve got up believing it was morning. I’ll brush my teeth and even head downstairs for coffee, I have gotten as far as drinking a cup before checking the clock and realizing what has occurred. I have made it part of my morning routine to check the clock. Most of the time I remember before leaving the bedroom.
I’m sure my husband’s favorite are the ones that include screaming. I can scream with squat. When I try it comes out a squeak. It is not uncommon for me to decide I need to practice screaming in a dream. It doesn’t always wake my husband, but it does often enough that it is a running joke. Each of these ties to a legacy moment.
Our house was always filled with music (still is). But when my girls were growing up any situation could make us break out in song.
For instance, on foggy mornings, we would sing America’s “Ain’t it foggy outside …. “
Vacuuming was almost always done to the soundtrack from Beaches.
When one of the girls was in a bad mood we would put some music on and dance. Dancing in the hall was a favorite.
Although I clearly favored country, I had a very eclectic collection.
I played trombone in high school. I particularly enjoyed marching band. There’s a piece of me that regrets giving it up, but outside of high school events it didn’t fit in my life. The time playing and taking lessons gave me a deep appreciation for Big Band music; particularly Glenn Miller.
Having grown up in the sixties and seventies with older siblings, early rock music filled the house. Much of that still brings very nostalgic memories. Sound tracks from various shows flood me with memories of participating in or attending plays.
As a teenager, I volunteered at a summer camp. Each summer we would have a talent show put on by the staff and volunteers. A group of us got together and did some songs from the 50’s. I was one of three do-up girls, complete with poodle skirt.
There was a preparatory seminary not far from where I went to high school. They would put a play on every year. Each year they would put a call out to the neighboring schools for girls to try out for the female roles. The year I was particularly active with the play we did Fiddler. I only had a bit part but dove in with great zeal for behind the scenes activities. I took on the responsibility for making the customs for the supporting cast. I made a taffeta skirt with elastic waist for each of the girls and a prayer shawl for each of the boys.
I have a strong tendency to semi wake when dreaming and start acting them out. Typically, the dreams are related to something going on in make sense with what is going on in my life at the time.
The room I slept in had a bed suspended from the ceiling, As the day for the play was approaching, I had one of those dreams. I dreamt I was sitting backstage on a box for the set. One of the stage hands asked me to get off the box as they needed to move it on stage. As I went to slip off the box, I realized it was rising. It continued to rise and rise. The floor seemed to become further and further away. Eventually; my feet hit the floor hard. At that moment I realized I was dreaming was dreaming and rather than being backstage I was in my bed.
Music, triggers so many legacy moment memories.
I have been a diehard country music fan as long as I can remember. The song “I was Country When Country Wasn’t Cool” (Barbara Mandrel) could easily be my theme song.
When my girls were much younger, we had a local radio station that you could call in a pair of songs during the lunch hour to be played back to back. They wanted to send that one paired with “Blame it on Mama (the Jenkins).
Consequently, every time I’ve gone for an MRI or other treatment that they offered music for I would request country.
After the first meningioma surgery, I ended up in ICU. ICU is actually fantastic if you have to spend days in the hospital, so much quieter and the ratio of staff to patients is phenomenal. After that first surgery, every time I moved, I’d be in intense pain. Based on what I had done the pain didn’t make any sense. After several days of trying different things, we decided a brain and spine MRI was in order. The level of pain I was feeling was indicative of a slow leak.
I was scheduled for 4 am for the scan, which is when I typically wake. This was my favorite time slot as typically they would call down; confirm I was good to go and I’d be back in my room before most folks were waking. This particular scan would take about two hours and require lying on an immobilization backboard. For the MRIs to be meaningful, there could be no movement in the images.
As is customary they asked what kind of music I would like and I indicated country. I’m still a huge country music fan but there ought to be a hospital filter on the playlist that keeps to happy songs. Instead what I got was:
If Tomorrow Never Comes (Garth Brookes)
If I Die Young (The Band Perry)
Live Like You Were Dying (Tim McGraw)
How do I Help You Say Goodbye? (Patty Loveless)
Holes in the Floor of Heaven (Steve Wariner)
One More Day (Diamond Rio)
Believe (Brooks & Dunn)
And more songs like that.
Since then I have started asking for Pop Music. I don’t recognize most of what is played and don’t try to follow the words so I’m not sure the playlist is better.
A couple of weeks back, the oncologist let me know during a regular follow-up, one of the other meningiomas was growing. Because they were so small, I qualified for Gamma Knife. Gamma Knife is a one and done radiation treatment. Between MRI and radiation, it is many hours in the tube. In preparation for this, I opted to work on my meditation skills. This turned out to be a very relaxing playlist. Had it not been for the clanging of the MRI and the slightly uncomfortable position my head was in for the Gamma Knife I likely would have slept most of the day.
The legacy moments of singing (and dancing – particularly dancing in the hall) fill me every time I hear one of those songs.
A few days back I was chatting with some girlfriends and the subject of having things explode came up. The front runner for greatest disaster was forgetting to pierce potatoes and having them explode, this was the front runner until I shared my story.
My girls were still fairly young, maybe five and seven, when this happened. It was just before Easter, In addition to getting the eggs colored we had a bridal shower to attend. In my typical fashion, I was sure I could juggle it all. I started boiling the eggs, with a plan to let them cool while we were at the shower. The girls finished their lunch and we piled in the car to trek down to the south end of the county. I had that forgot something feeling the entire drive. As we pulled into the driveway, it dawned on me what I forgot. I had not taken the eggs off the heat.
I called Grandpa P, my neighbor across the street. As he and his wife had adopted my children as their grandchildren, I had long ago left a spare key with him. I made him promise not to clean up the mess and just turn the burner off. He agreed. He called me a short while later. Not only had the pot boiled dry but the eggs all exploded. There were bits of burnt egg everywhere. As promised, he did not clean up the mess. He did open every window in the house in hopes of airing out the stink. As we returned to the house, the girls in unison requested eggs for dinner.
This was by far the greatest kitchen disaster I ever experienced but by far not the only.
There was the time I picked up gyros from a local Greek restaurant. The gyros had cooled down considerably by the time we arrived home. I opted to popped the whole bag in the microwave, forgetting they were wrapped in foil and there was a stack of flimsy napkins in the bag. Within seconds the microwave was full of flames. The gyros survived but the same could not be said for the microwave,
Along a similar vein was the time as a teen I assumed a Pyrex bowl would work as well for melting butter as a metal bowl on a gas stove. You guessed it, that was the end of the Pyrex bowl.
These are the only ones I recall being directly responsible for. One of my favorite stories is when someone in the household misread a recipe and added a cup of salt instead of a pinch of salt to brownies. This was one of those disasters that likely should not have been salvage, but mom decided to try. By the time she added enough oatmeal and other ingredients to dilute the salt there were dozens and dozens of cookies. As I recall the story, several boxes ended up at boy scout camp with my brothers and were use as weapons against a neighboring camp. Another piece of the story is years later they were used to melt snow after a storm.
Even with the disaster nature of each of these situations they are truly legacy moments. Each one will be with me forever.
Technology today has made it easy to maintain a sense of socialness. Early on during the pandemic, one of my golf buddies sent a note to all of us asking if anyone had a zoom account that we could all get together for happy hour on Friday. Having such an account the wheels were put in motion. We’ve gotten together every Friday night since then. Granted it is a different sort of happy hour but it is great to see everyone.
It didn’t take long to realize additional opportunities. I’ve shared many a cup of coffee with folks I would traditionally meet at a coffee shop. It’s fantastic catching up for an hour or two without a particular agenda.
My family has a standing meeting once a week for all that can make it. I’ve seen more of my siblings during this pandemic that I typically do in a year. In general, we are all so busy, that the only time we get together is weddings and funerals. The nature of our busy lifestyles, even weddings and funerals are not guaranteed.
Given the physical distance, my girls and I live from each other, we’ve used video chats for as long as they have been available. It’s a blessing to be able to share in them raising their children. My granddaughter has recently started potty training. Through technology I was able to celebrate with her mom her success.
Another amazing celebration was my best friend’s birthday. We coordinated the menu, including matching birthday cake. We shared dinner via Zoom. Followed by lighting candles on respective cakes, and singing happy birthday. It was wonderful sharing the moment.
Several networking groups, I belong to have shifted to video meetings. Some I’ve coordinated the online activities to facilitate the networking; Others I have just been a participant. Zoom offers a breakout room feature to divide the large group into smaller groups. These smaller groups create the opportunity to get to know someone better.
Our Rotary club has shifted to online meetings. Since my surgeries I’ve been finding it difficult to make meetings. The online format has taken away my excuses and I’ve thoroughly enjoyed re-engaging with Rotary. Our club does an activity that is called member tête-à-tête. The names of the participants are put into a hat each person is given the name of another person. You reach out to the person you are given and get together with them; the primary purpose is to get to know another member on a deeper level. Since you are given someone, and someone else is given to you, it creates the opportunity to get to know two members. In the current situation these have shifted to a virtual platform also.
I also reconnected with the bluebirds. The bluebirds are a special group of women that I worked closely with during my doctoral program. After completing the program, we all went back to our busy lives. Some of us would get together occasionally, but the opportunity for all of us to get together was illusive. Now we get together every other week.
As I contemplated the breakout rooms, I realized we might be able to get our Bunco group together for a game. It took most of the night and a bit of trial and error to figure efficient ways of moving people around. Much fun was had by all and even with the physical distancing, social connecting continues to create legacy moments.
Since I was a child, I had a tendency to contemplate the questions that simply could not be answered. Or muse on tremendously philosophical concepts.
One that I had given much thought to was that for us to unite as a planet we would need a common enemy. In my mind that common enemy would be a life from another planet. The conundrum I had envisioned, was for life on another planet would have to be more advanced than us for them to have figured out space travel. And for them to have reached that state of enlightenment they would have to be peaceful. Given all that they would know better than to stop by for a visit. Never would I have guessed that a microscopic virus would be that common enemy. I do hope that what we’ve learned about caring for each other is not lost when we get this situation in check.
Some other questions I like to contemplate:
Since color is simply how we perceive a certain wave length of light there is no way of knowing if those perceptions are identical. Said another way if I was to look at an apple through someone else’s perception. Would the colors look the same to me? We can confirm that we give the same name to the same wavelength as we each view through our own perception, but there is no way to test what our perception of that name is. And to take it to an even deeper conundrum, if we could identify everyone’s perceptions might we all have the same favorite color. Like I said, unanswerable.
Or cogitating on the infiniteness of the universe. Trying to wrap my head around this in finite terms, I would convince myself there has to be and edge or end to the universe, but that would need to be in something else. More universe? Ok, so when we get to the edge of that, then that would have to be in something else, Again, more universe? Ok, so when we get to the edge of that, then that would have to be in something else, Again, more universe? And so on. Alas no, imaginable end, and no way to answer it.
When I went to Kenya, I had all the answers; when I returned, I realized I knew nothing. Many of the questions that came up during that trip had no good answer. For instance, there is a region where unemployment is at 75%. Those that do work, work at a long stem rose farm. The farm gets water for the roses from a lake. At the rate the water is used the lake will be dry in roughly 10 years. However, slowing down production would kill the farm and put the entire population out of work. So damned if you do damned if you don’t. There were many other stories like this. What it made me realize is things that seem to have an easy answer, frequently don’t. It is only by looking at the full picture that we can determine a path forward.
More recent contemplations have revolved around, what is important in life. Between the surgeries, the cancer and this virus there has been lots of time to think about what matters. Interestingly, each time I had to clear the work off my calendar it was easy to do. It was easy to find someone willing to cover for me, or the work became irrelevant. On the flip side my calendar is backfilling with lots of zoom meetings. I am getting to ‘see’ so much more of family and friends via the internet. The need for personal connection is strong. I’ve met with folks I haven’t connected with in years. So many legacy moments of amazing time together, even though so far apart.