It’s been a year since my craniotomy and meningioma eviction. And, today happens to be Thanksgiving, probably my favorite holiday of the entire year. So let me tell you what I’m thankful for.

• An outrageously supportive family
• Incredible friends
• A world-class healthcare team (Emory Neurosurgery)
• Supportive coworkers and employers (even though I no longer work there, I’ll never forget the love and kindness shown to me)
• My sweet dogs, always up for a snuggle, a snack, or a nap
• My graduate program’s willingness to give me a medical withdrawal and then let me continue the program so I can graduate on time
• Coffee, tea, and ice cream

If you’re in a similar position as me–you need brain surgery to remove a meningioma–I want you to keep in mind a few things.

One, everyone’s experience and “journey” is different. It was really unnerving to see vlogs and blogs about meningioma that were unintentionally scary. Once I thought about it, I realized the enemy was the unknown. I didn’t know what I was facing, but I was still scared and anxious. Please, instead of focusing on what you find online, listen to your healthcare team. Ask questions if you don’t understand, even if it’s a simple thing like how long you’ll be in the hospital, or what your scar will be like.

Two, if you do find yourself worrying excessively, or becoming uncomfortable with the way you’re feeling in the face of your diagnosis, plan, or recovery–find help. One place to start would be to ask your healthcare team for a referral to a counselor. Your primary care physician can also help. Many employers offer an employee assistance program (EAP) which offers short-term support assistance to employees and their family members (usually, limited to those who live in the same household as the employee). To access the EAP, you call a toll-free number and speak with an intake counselor about what is going on, and that person helps you locate resources in your community for help. EAPs typically provide short-term counseling for free (anywhere from three to eight sessions is typical), but immediate assistance is also available over the phone. And if you ever find yourself in a position where you feel like hurting yourself or others, please tell someone you trust or go to the nearest emergency room.

You will feel better–eventually. Realize the small victories you achieve every day. Maybe you take one fewer pain pill or you feel your appetite coming back. Give yourself time to heal, physically and mentally. There’s no timeframe on health.

Throughout this entire situation, I realized just how important my attitude was to my recovery and my overall health. So while it’s not always easy, please try to keep a positive attitude. It will benefit you in the end.

Happy Thanksgiving!

 

 

 

 

I have a reminder on my calendar next week to call my neurologist and set up an appointment for my one-year brain MRI. Ideally, I’ll get it done in September or maybe October, so it won’t exactly be a year since my surgery, but hey, what’s a month or two when you’re talking about brain tumors?

This is the type of thing that keeps me awake at night–the anxiety of what might happen. What if there’s another tumor? What if I have to have another craniotomy? What if they find something else up there?

Last night, as I pondered these questions for the umpteenth time, I heard a strange noise, which I did my best to ignore. When I arose for the last bathroom break of the evening before my slumber started, I turned on my bedside lamp, and my eyes were instantly drawn to a small, grey lump on the carpet.

Upon closer inspection, I found that a toad had joined me. I had no idea how this toady frog boi gained entry to our house, nor my second-storey room. My best guess is that he hitched a ride on one of our dogs.

This isn’t the first time I’ve shared my room with a reptile. A few years ago, I was staying with my aunt and uncle in California when I noticed a fence lizard in my room. I think their big floofy orange cat brought it in. Unfortunately, the lizard took shelter somewhere in the room, and I was a little freaked out about having to sleep in a room with a lizard on the loose.

We had a few drinks, got a little giggly, and tried to figure out how to lure the lizard out of the room. My husband suggested microwaving a plate and putting it in the middle of the room–cold-blooded reptiles rely on heat from outside sources to maintain their body temperatures–which sounded like a perfectly reasonable thing that some herpetologist expert might have suggested. Except he totally made it up.

Eventually, I fell alseep, and the lizard was never seen again.

So whether it’s a brain tumor, or a visiting reptile, there’s always something that will keep me up at night. It’s just how I am. I’m also hopeful that like the lizard, I’ll never see this tumor again.

First, the BEST news: I finally heard from my doctor, and it was decided I don’t have a second meningioma. YASSSSSSS.

I’m slowly getting back to normal life. After surgery, I feel like I have so much more energy. I’m not experiencing headaches like I used to. I don’t feel tired. I’m in a better mood. So I’m starting to get back to a level of normalcy that has been absent from my life for quite some time.

One of my most treasured activities is ballet. Those of you who know me in real life may be surprised about this as I am just about the polar opposite of a typical dancer. I’m tall and large and bulky. I sweat a lot when I work hard. I can’t find a leotard that will fit me right. Just about the only thing I have in common with a ballerina is that I have really excellent, high arches.

Tonight, I returned to dance class. A dedicated group of my dance friends from two studios ago keep me in the loop about classes they go to, and tonight I was able to join them. I am forever grateful for their friendship and camaraderie in dance. We all work hard and challenge ourselves. It is fun!

I happened to return to class on an extremely challenging night. We worked on the floor. Not across the floor, on the floor–instead of at the barre, we did the typical ballet technique exercises laying on the floor, with a giant rubber ball in between our thighs. I know I’m going to pay for it in the morning, but it felt great to challenge my muscles and joints.

Another thing I’m back to is my masters program. I had to take a medical leave last term, which was actually the first term of the program. I remember the day I went to campus to break the news to my professors. It was a gorgeous fall day, and the late afternoon light made the bricks of the campus buildings glow. The grass was still quite green, but the leaves on the trees had already started to turn colors. I had the distinct feeling I was breaking up with someone, like I wasn’t going to see them again.

Never fear, graduate school will always be there, ready for you. This past Saturday was a whirlwind. I worked with two other students to shoot a short film. It was really invigorating. I loved everything about it. (Let’s see if that is still the case when we get to editing this Saturday!)

The theme through all of this is learning. I like to keep active and learn new skills. I like to challenge myself. Dancing ballet as an old lady who didn’t dance as a child is a good way to scare yourself. Even more so if you can perform in public.

(“Dance like nobody’s watching, cause they’re probably on their phone looking at Facebook.”)

You know what else scares me? Running audio for a film, when I just learned how to use the recording device and mic 20 minutes ago. It’s like some sort of reality show. “Graduate School Survivor Island” or whatnot. Your next challenge: speed-editing your film together without losing any of the important bits.

But I do it. I have developed the grace to allow myself to make mistakes and to not be perfect. It’s a great lesson for me, and more importantly, for my daughter.

This was a gift from my brother, his son, and his partner. His partner K had this hat made especially for me and I LOVE IT. I just opened it today at my family’s first annual civil rights luncheon/second Christmas because of crazy schedules.

#winning

One of the features* of my personality is that I physically manifest stress. The first time this happened, I was managing a challenging project at work. I ran an insurance audit program, and the client in question had been planning to do an audit for about two years before they finally decided to move forward. It was a municipal government, so instead of only having the layers of bureaucracy I was used to dealing with (directors and VPs and EVPs and so on), there was the fact that somehow, time seemed to move more slowly in their office.

I went to work one morning a few weeks before the audit was scheduled to go live. At this point, I was having nearly daily phone calls with my point of contact at the client, which was pretty unusual. I had established a really good protocol to get programs off and running with minimal client input after the initial meeting, because that’s what most people wanted–a turnkey solution. Not this lady. She was a risk manager, and I was a risk to be managed. So we would talk daily, run tests, I would look at data and make sure we each had the same result.

Over the course of that day, I felt like I was getting a really bad menstrual cramp. This was not unusual for me, and I had a huge heating pad and jumbo bottle of ibuprofen in my office, so I popped a few pills, cranked up the heating pad, and got to work. The afternoon rolled around and I collected my daughter to take her to the allergist. I noticed that the pain, which felt an awful lot now like back labor felt when I was birthing said daughter, was not getting any better. I was limping around and was getting rather scared because it now hurt to walk.

My daughter and I returned home and I realized something was really wrong. I couldn’t walk. My back was so locked up, I COULDN’T WALK. What was going on? My sister came over and drove me to the ER where I was told that my back was messed up.

OK. So my back was jacked. I got muscle relaxers and pain medications and followed up with my primary care doctor as instructed.

“What happened to you?” my doctor asked, seeing that I was still massively uncomfortable. “Did you have an accident or lift something? How did you hurt your back?”

“Um… actually… I was hoping you could help me figure this out. I literally just woke up one day and my back hurt. It got worse and worse, and I couldn’t walk, so I went to the ER and they said my back was messed up,” I stammered.

It was then that my doctor told me that in adults, ANYTHING can cause your back to go out. Sneezing can do it. So can getting out of the car the wrong way.

When she asked if I was stressed, I said yes–extremely. We concluded that stress had been the cause of my back problems.

So, ever since then, I’ve had to really actively try to manage my stress. As I was a pretty carefree child, teen, and young adult, having to make an effort to not stress out was novel.

Another problem came along when I started clenching my jaw in my sleep when faced with stress. I have a mouthguard (that I end up spitting out in the middle of the night), I take the muscle relaxer pills, I get the Botox injections to relax the muscles in my face. But it’s not enough.

Enter the mantra. A mantra is a phrase you repeat to yourself that helps you meditate. It comes from the Eastern religious traditions but has been widely adopted all over the world, by all kinds of people, with all kinds of needs.

In my case, I say my mantra before I close my eyes to sleep. My mantra is:

“Lips together, teeth apart. My teeth will never touch.”

It’s simple, but it works. It helps–a lot.

As I’m waiting for my neurosurgeon to get back to me on what my MRI really shows–if we’re ready to have meningioma round 2–I have to remember to relax. And as I get back into my regular routine, I have to remember to give myself the grace I deserve.

 

*(In software design–a world I was part of for a long time–we would say, “It’s not a bug, it’s a feature!”)

Back when newspapers were the best part of waking up, aside from Folgers, that is, everyone read the comics. And they weren’t all funny. Some were just serials told in illustrations, like a hand-drawn soap opera.

To wit:

This puzzling comic appeared in multiple newspapers in November of 1962. I always thought a Mickey Finn was a spiked drink, e.g., “I’m gonna slip her a Mickey.” Apparently, it was also a comic strip by Lank Leonard, about a well-intentioned, good-hearted police officer. Why this guy has a meningioma, or why it is significant, is lost on me. Anyone know?

On Thursday of this past week I checked to see if the radiology report from my New Year’s Eve post-op MRI was ready. The purpose of this MRI was to check that I was healing well.

The health system I use makes these documents available via the patient portal. Any time I have an MRI (or bloodwork, or any other encounter with a test) I review the report and print a copy for my own records.

This scenario works really well because most of the time, I know what to expect. I thought this would be a straightforward type of thing. I’m feeling well, still in good shape, no changes. I’m not randomly vomiting or walking in circles or speaking German. I haven’t had a headache in a few weeks.

But this report threw me for a loop.

It said I have a subdural hematoma. And it also says I have another meningioma.

I already knew what a hematoma is. It’s the clinical term for a bruise. Logically, I thought having a bruise at my surgical site makes sense. There was trauma, the blood clotted to protect the site, and I’m only about a month out from surgery. I suppose this makes sense; thinking back, though, I do not recall the surgery team advising this was likely to happen, or even could happen.

Google results on “subdural hematoma” do not console. It is portrayed as an emergency, or at least a really urgent situation. Like, get into surgery now because your brain is going to be squeezed into oblivion. Subdural hematoma is often caused by a head injury, as you might expect, although it can also be spontaneous. In my case, it’s probably due to a vein being cut during surgery.

Physicians judge subdural hematomas on at least four criteria, so far as I can tell: origin, thickness, reason, and if the brain has changed due to the hematoma. The origin of mine is likely the vein cut, a casualty of surgery. The thickness of mine keeps it in the don’t worry about it zone. And the reason for mine is the surgery. I don’t have any other risk factors, like alcohol abuse or advanced age. The hematoma has not caused the midline of my brain to shift, so it seems not to be affecting anything–just looks spooky on the MRI. So, this is a watch-and-wait situation.

On to concern two, Meningioma’s Revenge. The report referred to prior imaging (done right before surgery) as a comparison, and said it was present on those images. So I went back and checked that report. It was not mentioned on that report… nor on the previous five years’ worth of reports. I’m not skilled enough to know what to look for on MRI images, except if it’s blatantly obvious AND has been pointed out to me, so I have no way to know what I’m looking for. My husband spent a while looking at the images, too, and the best we could come up with is that it’s a mistaken impression. But who knows?

I emailed my surgeon’s PA to ask about the two issues. She promised to follow up with my surgeon. So here I wait, trying to not let it ruin my weekend.

There are so many unknowns about meningiomas. It’s not like a growth you can see on or feel through your skin. There are no outward expressions of a meningioma’s development. There is no way to pinpoint when a meningioma begins to grow. Could another tumor have sprouted since November? It’s not out of the realm of possibility.

But I hope it is just the radiologist’s mistake.

 

 

 

Patron saints are like advocates for specific causes, afflictions, countries, sports teams… you name it. They are mainstays of more orthodox traditions, like Roman Catholics and Anglicans, although many Christians (and non-believers) will call upon a patron saint at some time in their life.

You don’t need to be Catholic to know of these two notable examples that seem to have permeated our American culture:

• St. Anthony, the patron saint of lost items. If you find yourself looking for your keys, or an earring, or your favorite book, and you just can’t find it, pray to St. Anthony. You can say, “Tony, Tony, please come down. Something is lost that can’t be found.” Sounds silly, but in my experience, it surely doesn’t hurt. I always find whatever I’m looking for after saying this incantation, although this is probably a coincidence.
• St. Joseph, that Joseph, the earthly father of Jesus, is also the patron saint of quickly selling a house. If you want to sell your house, bury a statue of St. Joseph in your front yard. There’s a prayer to say, and once your house sells, you place the statue in your new home, in a place of honor.

Many folks seek out some type of tangible help–something to hold on to–when going through a crisis. I was no different. I wanted any sort of help I could muster. My family, friends, and colleagues were a wonderful source of support, but what about other-worldly support? If I’d moved into a house I didn’t feel quite right about, I would definitely smudge it or seek a blessing for it; why wouldn’t I do the same for my body?

I wanted to research any patron saints of… illness? Brain tumors? Surgery? I tried to track down my copy of The Golden Legend from college, seeing as I was a religious studies major, but couldn’t find it. (I said the St. Anthony prayer until I remembered I had sent the book into trade at Powell’s.) So I turned to the Internet.

St. Peregrine is the patron saint of serious illness. He was born in Italy in the late 1200s, and lived a holy life. He was afflicted with cancer but never gave up his love for God. I couldn’t find any specific patron saint of tumors, nor brain tumors, so I figured St. Peregrine was a good match.

St. Padre Pio (or Padre Pio, as he was known) was an Italian Capuchin monk who received the stigmata. He also suffered from several serious illnesses during his life, some of which were mysteriously healed spontaneously. Thus, he is said to protect against stress–he certainly experienced it during his life.

I couldn’t find a specific saint for brain tumors, so I went with Sts. Peregrine and Padre Pio. And I added in St. Joan of Arc for good measure, because she was an amazing, powerful young woman who didn’t back down and trusted in her destiny–the exact qualities I needed to exude to conquer my own battle.

I bought religious medals from a seller on Etsy. Just having these in my possession made me feel better. While I never prayed to the saints specifically for intercession or protection, I knew there was someone out there, in some realm of time and space, who would be on my side.

Looks like it worked.

 

 

It’s been a little over four weeks since the surgery, when I had my skull cracked open and my tumor removed.

• My incision is ticktey-boo. I keep finding sutures popping out every so often. Doesn’t hurt, just odd.
• No more headaches.
• No more pain around my incision site.
• I have blow-dried my hair–gently, of course–without a problem. (I’m still waiting for the OK to head to the salon for color, though.)
• I’m feeling quite well and planning to returning to work on January 2.

A little over a year ago, we lost our beloved Belle, who was the sweetest goldendoodle to ever have roamed the Earth. She turned people who didn’t like dogs into dog people. She was 45 lbs. of cuddles, snuggles, and pure love.

Belle’s passing turned our three-dog household to a two-dog household, and my daughter felt like she didn’t have anyone exclusively for herself. She saved her birthday money and bought an aquarium and some beautiful fish, including a gorgeous betta named Jerry, but quickly learned a fish wasn’t a good substitute for Belle.

It was finally time to bring another pup into our home. Of course this was on Black Friday, five days before my operation.

What could go wrong?

Turns out that we really lucked out at the Atlanta Humane Society when we found this little one.

Meet Macy:

It did occur to me how badly this plan–getting a new dog, especially a puppy, five days before brain surgery–could go. But, my daughter needed a dog. She needed someone to be her very own, warm in her arms. Especially when her mom was going to have brain surgery.

Fortunately, little Macy turned out to be a gem. She is probably around six months old now (she’s in the midst of losing her puppy teeth). Macy had no trouble with the kennel. She gets on well with our other two dogs, Jett and Fergie. Macy loves to play, but more importantly she loves to snuggle. She still has that soft puppy fur and loose puppy skin that slides all over. She’s affectionate and only the vacuum cleaner scares her. Macy and my daughter are inseparable. And it’s lovely.

As it was Black Friday the day we came home with Macy, sales were on all over, and I got a Wisdom dog DNA test. We were all very keen on knowing what Macy’s provenance was. She has spots like a Dalmatian, but nips at the heels of the other dogs. Her tail is long and the hair on the end of it looks like a paintbrush. Her sweet little head is elongated like a bull terrier.

Turns out that she is part bull terrier, American Staffordshire terrier, boxer, and various other assorted dogs, with no mention of Dalmatians whatsoever.

The only thing that matters is that she is a GOOD dog. She’s a great pal for my baby girl. That’s all that matters.

❤️