Being brave isn’t the absence of fear. Being brave is having that fear but finding a way through it.
— Bear Grylls
This is the first post on my new blog. I am not a writer but rather a woman who needs an outlet, and this is it for now. If you are part of the grammar police please excuse my lack of attention to detail, my mind is like a spinning top and I just need to get my thoughts out of my head. I was recently diagnosed with a tumor in the 4th ventricle of my brain. This blog is intended to help me share my story and experience as well as serve as validation to anyone else out there on a similar journey.
I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates. Thank you for tuning in. Peace and ❤️
Many many years ago I learned to do a meditation involving a tree. The premise of this meditation is that you close your eyes and picture yourself walking down a path until you come upon a tree. This particular tree is big, strong, has deep roots so that it is firmly planted in the earth. It has large expanding branches that reach out to the sky as if they are beckoning to the heavens. As I stand beneath it I feel small and overpowered, which is perfect because that is how I feel emotionally when I visit this tree.
My tree is both a meditation and an actual place. Sometimes I would go to my tree in my mind and sometimes I would get in my car, drive 3 miles down the road and hike 1 mile into the forest to stand beneath it. Once there the prescription is simple. Breathe and lay each of your worries onto the branches. Breathe them onto each large limb and know that it will be held now by someone/something other than you. Your burden to carry that worry has been relieved. For years I lay many burdens onto that enormous tree.
On my 40th birthday I went for a walk and when I got to her she was broken. It’s a no wonder, she was over a hundred years old. Two of her largest branches had fallen to the ground, crumbled, in hundreds of pieces.
To me that tree crumbling was a representation that even my tree was tired of holding my shit. That I needed to let it go. Some people might say that I am making something out of nothing, a coincidence, but I don’t care. It’s how I framed it when I approached her and it stuck. She didn’t want to carry my decades of guilt, self hate, shame, hurt, you know all the fun stuff, and frankly neither did I. So I walked away and left it at the base of her trunk along with the rest of the broken branches that had already fallen.
I thought I was “cured”. That my days of dealing with mental health were over. In some ways they were, I don’t really revisit any of that stuff from long ago. I walked by that tree countless times and smiled, happy to have had her help all those times before. After about a year I realized that while it was true that I had come to peace with my past…my present and future were still in front of me.
Life was continuing to happen. A close family member was facing a difficult diagnosis, then I got my own brain tumor diagnosis. My anxiety was back and in full force. I quickly realized that mental health is not linear, there’s not a simple beginning nor an easy end.
I suppose that some people reach the summit, the pinnacle, and arrive at a place of conquering their mental health struggles. I mean maybe perhaps for some people that’s how it works but that’s not what my journey has been. My journey has been that anxiety is ongoing because well…life happens, and when you overcome one obstacle, another one gets thrown in your way. We are constantly evolving and changing and learning to flex into what is difficult and that’s what makes us stronger, what makes us wiser.
I’m learning to know what my strengths and weaknesses are. I’m learning that while I can be the life of the party, I’m not a particularly funny person. I’m not a jokester. I’m serious I’m contemplative, I’m purposeful pretty much about everything that I do. I think the reason is that, for a portion of my life I wasn’t. I was careless with myself and with others. Those are the years that led me to having a lot of regret and self hate. and I don’t want to feel that way again. I don’t want to feel that I caused people harm, sadness, or heartbreak, simply because I’m not being careful with their feelings, with their emotions, with their spirit and their soul.
I haven’t found a new tree yet. I guess I didn’t think I needed one but today, on my 43rd birthday, I went for a walk in the same park that my broken tree resides in. I found a new tree because the reality is that as many times as I keep going around the sun, I’m going to continue to encounter obstacles, difficulties, heart breaks and difficult moments. I need a healthy coping skill and so to my new tree I will go.
As I walk by this tree contemplating how I show up in the world, how my behavior, my actions affect other people, I will continue to pass by this tree the same way in which I continue to go around the sun…slowly and with intention. And hopefully I keep getting better, wiser and hopefully I learn a few good jokes along the way.
Last summer I was at my friends home and her husband was engaged in a most unusual activity. He was using tweezers and moving small pieces of leaves around a container. I was immediately intrigued. He explained that he had collected monarch eggs and was now diligently caring for them so that they might hatch into the tiniest caterpillar you have ever seen. He would then feed this small caterpillar until it grew bigger and eventually made a chrysalis and then hatched into a monarch.
You can do this in your home?
His wife took me into their bathroom and showed a string of chrysalis hanging, waiting for their day to emerge.
I was hooked. I had to do this at my home. I needed to experience this firsthand.
My friends sent me home with milkweed plants and my journey was underway.
I was successful at releasing 6 monarchs last year. My friends released over 200! They have given me a goal, a lofty one but I was determined to work hard this year to release as many as I could.
So at the start of the season I began to fervently comb my milkweed plants for eggs. The eggs are tiny, they look like the tip of a pinhead.
I started to comb through the leaves multiple times every day, hoping to come across these teeny tiny beauties. The first couple of weeks were uneventful, but then one afternoon as I was pulling out of my driveway I spotted a female scoping out my plants. I jumped out of the car and watched her as she laid the first of many eggs to come.
As I collected those first eggs I started to think about a friend of mine who has infertility issues. I thought about how each one of her eggs is so very precious to her. Each one holds so much promise of what is to come in the future. This friend has lost 6 babies. Each time she calls me I hold my breath waiting to see what news she has, is it good news or sad news. As I lay each leaf into my hands to try and bring forth life, I thought of her and when we met how devastated she was when her first daughter died. I decided in that moment that the sanctity of eggs, human eggs, butterfly eggs, would not be wasted on me, I would fully appreciate the process and be cognoscente of all the ways it can go wrong and your baby doesn’t end up here. It turns out that in the wild only 10% of egg/caterpillars survive and make it to the butterfly stage, like growing a human baby there are many ways this can go south.
So I learned this delicate hobby and fed my caterpillars, watched them grow and waited for the next stage. The chrysalis, the magical moment when the caterpillar winds itself up and transforms before your eyes.
This year I will be tagging my butterflies when I release them. The purpose of this is to see if they make it all the way to Mexico when they migrate in the fall. Each monarch is given a number and it is put into a database. Each monarch becomes a data entry point. When I spoke to my neuro oncologist from Columbia 2 weeks ago he told me that they didn’t have enough data points on me to know exactly what was happening in my brain. They think they know but are not certain. I know it wasn’t his intention but I felt completely dehumanized. I had been riddled down to data entry points.
As I have watched these little insects grow and change I have been thinking about all my moms who have had fertility issues along with my own brain tumor I decided that this year I wanted to name each one. They each deserved to be more than a data entry on a spreadsheet, they all deserved more respect.
The first names that came to mind were those of my friends 6 babies. When we met she had just lost her daughter Juju. So my first butterfly to be released would be Juju, I knew in my heart that this was exactly the right thing to do.
It turns out that Juju hatched early. All of my chrysalis were still bright green and had not started to change color but yesterday morning (the 27th) when I came outside she was sitting in her habitat. I mentioned it to my husband that it was strange that she had hatched so early, she really wasn’t due to be here for at least 4-5 days. He chalked it up to averages and we moved along.
I texted my friend in the afternoon and shared with her my plans, to release butterflies named after all of her babies. She was honored. I am honored to be part of such a special journey with all of my families.
When I told her that the first one had hatched today and I would be releasing it and it’s name would be Juju she texted me back “it’s the 27th… Juju was born on the 27th, it is a sacred day for me”.
I have worked in the world of loss and grief long enough to know one thing. There are way too many coincidences that occur around the loss of loved ones to attribute all of these encounters as “chance”.
The rest of my summer will include lots more feeding, tagging and releasing. It’s a hobby that keeps me busy, keeps me calm and is helping a species on the brink of endangerment.
My hope for everyone who reads this is that you find the thing that brings you joy, makes your heart smile and keeps you going. These are strange times and we all need a little bit of delight.
There is a stretch of land on my husbands family’s property that as you walk you hear a very distinct sound beneath your feet. If you have never experienced this before you might not even notice that you are walking on top of something, but you would be wrong. For many years ago my husbands grandparents used this part of the land as a “dump”. Anything metal or glass was pitched into this part of their land and over the years leaves and roots have covered the debris. The coverage is minimal, the new layer of dirt is only about an inch thick. As you walk along this stretch of land you can hear a light crunching. It is the sound of aluminum pressing further into the earth, glass descending deeper into the topsoil. One could assume that walking on glass would break all of it immediately, but you would also be wrong.
Our last visit to the land was right after Earth Day and while we had done an Earth Day cleanup in our own community the kids and I decided we wanted to cleanup this part of the family land. We started with the obvious piles and then I began to notice the sound beneath my feet when I was in certain sections, so I started to dig and unearth all kinds of treasures.
Some was plain old garbage, broken pieces of cans, bottles, old mattress springs, an old hairbrush but there were also copious amounts of glass bottles that were unbroken. Vessels that were completely useable, so I did what I do best, I started collecting them. By the time the kids and I were done (and it is by no means done) we had nine contractor bags full of glass and metal. One whole bag was coming home with us for me to reuse. My husband would insert an eye roll emoji here! I have a tendency to not be able to pass up “usable” items.
I did a lot of thinking and pondering as I spent the day clearing, cleaning and unearthing things that were not where they belonged. This is in no way a judgment on my husbands grandparents, they were part of a different time in history, a time when caring about the planet was not on everyone’s radar. It was a time when landfills were commonly in homeowners backyards, but it got me thinking…
What is it that I do that my kids and grandkids will look back on and say “goodness how did grandma not know about that, how could she have not realized the damage she was doing”? I’m certain that Patrick’s grandfather never imagined his granddaughter in law cleaning up his garbage pile at some point in the future, and yet here I was.
I pondered how I can show up better, how I have an obligation to the future generations to make good choices even when they are not the most convenient choice for me. I thought about what I am not even aware of, what are are my blind spots?
Then George Floyd was killed.
I have always been a proponent of equal rights, and of the black lives matter movement since it’s inception. I understand white privilege, and acknowledge that I benefit from it. What I didn’t understand was how unknowingly, I was contributing to this system. I am reading the book Me and White Supramacy, interestingly I took it out from the library the day before we were quarantined and it had been on the floor of my bedroom waiting to be picked up. Now was certainly the time!
This book has forced me to see my blind spots. It has made me look at all my “good intentions” and “acts of kindness” and realize that sometimes even with the best of intentions, I am screwing up. Sometimes I make judgments and say things that are culturally inappropriate. This book has made me realize that I have to do better. This book has made me realize that “this” is my dump. This is one of the issues that my ancestors could look back upon and say “Grandma why didn’t you do more, how could you say things like that”?
When I was thinking about walking on broken glass I couldn’t help but to think of how talking about racism feels like you are tiptoeing on broken glass, trying not to get cut, uncertain about the terrain, not always knowing what way to go. I think the reward is the same as the unearthing of the beautiful unbroken containers, finding wholeness in others and ourselves.
And into brain tumor news… I decided to go and have the 4 month MRI during the Covid pandemic because the amount of cases in WNY had been decreasing and that peace of mind was important for me. My results came back and the tumor is stable at this time, they did not detect any growth. This is of course great news! The eternal optimist in me (sarcasm) doesn’t want to get her hopes up until the one year MRI. At diagnosis the doctors me that this type of tumor grows on average 1mm per year and that any growth less than 1mm cannot be detected in an MRI. I guess that leaves me wondering if it is in fact growing, albeit slow, but just has not shown up since it couldn’t be seen yet.
I currently view my life in six month increments, just get to the next scan and then reassess.
My goal for the next six months is that I am going to do my damndest to show up better for my nonwhite friends. I am going to try hard to clean up “my dump” now so that no one else has to deal with it later on.
I have been wanting to write for weeks, but I have been wordless. Literally wordless. Waking each morning, making my way through the days falling asleep at night, and not feeling like any of it really happened the next morning when I arise and do it all over again. I feel like I am living in a dream where what is happening or the lack of what is happening is just, surreal.
So we are in the midst of a pandemic. Corona virus causes the respiratory infection Covid 19 and to date there have been 2.5 million cases worldwide and 174,000 deaths. In the United States we have had 810,000 cases and 44,000 deaths. My kids and husband have been off of school since March 13th. It’s officially been 5 weeks in quarantine. We have not gone anywhere except to do curbside pickup of groceries. We are obeying all the “social distancing” rules, which is really physically distancing and not seeing our family or friends and it’s starting to take its toll.
I am working from home and like many others out there, this has been an adjustment. I have had to learn new technology and adapt to not seeing my patients in person and most importantly not giving hugs which is really important to me. I feel very connected to everyone still but there is a difference in seeing people in person. I’ve always known that I am a very “touchy feely” kind of person but this has reaffirmed for me how important human contact really is.
As the days have gone by I have longed to feel something that would move me to write. And then it happened. I was listening to NPR, it was an interview with a long time first responder EMT. He was talking about a recent experience he had with a husband whose wife had died at their home from Covid. Both husband and wife worked in health care and the wife became ill. The husband tried to call into work to stay home with her and care for her but his job said that they were short staffed and needed him to come in. He went to work. He came home the next morning to find his wife dead in their home. His wife died alone. He didn’t get a chance to say goodbye. The EMT was very emotional as he described how painful it was for him to be present with this man but couldn’t offer comfort in the way of a hand on the shoulder or arm, a hug, he had to stay 6 feet away from the husband as they considered him to also be positive for Covid and needed to protect themselves as well.
These are unprecedented times.
The next morning I awoke and turned on my phone and the first thing I read was a story about a woman whose husband died from Covid and the funeral was a disaster because they could only invite 10 people. Many family members were angry that they had not be chosen as part of the 10. She was unable to receive “in person” condolences of people who knew and loved her husband. There was no shared sense of grief. The community aspect of grief was gone, she felt completely alone.
Since I was on a roll I decided to keep reading more articles and the next I read was about a local man who died from Covid alone in the hospital. The daughter spoke to a local news station and was very upset about her dad being alone, how unfair it was for him to be by himself when he took his last breath. Sadly all of the people who are dying in the hospital are dying alone since there are no visitors allowed right now.
When this initially began I think I was in shock about all of this happening and I couldn’t feel anything because it was all too much, but something about the combination of hearing these three stories in one day flipped a switch for me.
I had a panic attack that day. It was an existential crisis kind of moment. The same kind of moment when I learned I had a brain tumor.
Facing your own mortality is something I am accustomed to (based on the work that I do) but some days it just hits me harder than others. There was something about the aloneness piece that I kept coming back to.
What was that?
And then like the skies parting on a cloudy day and the sun shining through, I knew.
When I was about 25 my grandmother died. I drove with my parents to Florida to attend the services for her. We have a very small family. My dad has one brother. That brother has three children. My uncles wife and children did not come to the funeral. So there was me, my brother and my parents, my grandfather and my uncle. One “friend” of my grandfathers showed up and when they arrived they whispered in my ear that they were only there to support me, not my grandfather (he had made some questionable choices at the end of my grandmothers life). I had always made an effort to visit these friends when I would go visit my grandparents, I still send Christmas cards even though I haven’t seen them in almost 20 years. Anyway, the entire event was tragic. Tragically sad that someone died and so few people cared.
The next day my mom and I were swimming in the ocean and I remember being very quiet, pondering the event from the day before. I finally decided to speak and said “Mom, I think that was the most depressing thing I have ever witnessed. It feels like no one cares that she died, her daughter in law and grandchildren didn’t even come. She had no friends, no coworkers, no connections to anyone. I don’t ever want that to be me”. My mom and I talked at length about the decisions we make in our lives having lasting implications.
This was a pivotal moment in my life. It quite literally changed the way in which I saw myself and how I showed up in the world. I can admit that I became a bit sidetracked with thinking about how many people would show up if I died, would people have nice things to say, would I die with a list of regrets, how could I ensure that I would be remembered fondly?
When I became a counselor a decade later I realized that some of this was ego driven. The need to be liked, the desire to be missed. Really it was so much more than that though. At my core what I really want is to live a life that matters to others, to make a difference in peoples lives. I want people to feel that they are better for knowing me and that I was part of their growth. I want to be present for others with no pretenses, I just want to be someone who will walk through hard shit with you.
I think what really triggered me the other day listening to these stories of people who have died from Covid is that they very may well have lived lives that mattered, but still they died alone, and their families are forced to grieve alone.
It is a sad time in our country, and there is a heaviness of grief everywhere. Life is different, things have changed and may never be the same. Families and friends are missing one another. People are missing community interaction.
This isn’t to say that there have not been silver linings in all of this, there certainly are and I will save that for another post! Our animals, they are winning. Our dog and cat have never gotten this much attention or exercise!
In brain tumor news I am supposed to be having another MRI in 2 weeks. I haven’t called to schedule it because I cannot imagine how they can sterilize the insides of the machines as well as the air in the room. I can’t wear a mask because they have tiny pieces of metal in them. The doctor at Johns Hopkins thinks it’s fine to wait a bit but the question is how long? How long will Covid go on? I suppose I will start to have symptoms if the tumor is growing but then am I putting myself at risk for other issues? Like many things in life sometimes there are not clear answers and we have to just do the best with the information we have and hope it’s good enough.
Many months before I got my diagnosis I had planned a romantic getaway for my husband and I to Costa Rica. We are not really resort kind of people so we chose to go to the less developed part of the country on the Caribbean coast, staying at a treehouse that I found through Airbnb.
I have been so excited about this trip but the day after I got my diagnosis I started to question whether or not we should go. In my heart I really wanted to go and escape reality but I was winding up my own anxieties about what could potentially happen, being in a foreign country and needing surgery, developing hydrocephalus, you know the kinds of things that your mind does when it’s a runaway train. Everyone I talked to said don’t cancel your trip, just go, enjoy yourself. We heeded friends and family’s advice, along with the doctors and didn’t cancel.
The trip started out a bit rocky as we didn’t know the area and we had to figure everything out on our own. I didn’t say anything to my husband on the first day but I was having doubts about whether I had chosen wisely and perhaps we should have just gone to a resort. We don’t speak any Spanish and many people there didn’t speak English. We didn’t completely understand the money system. We didn’t have a vehicle, we thought we would just be able to taxi everywhere (which wasn’t the case). We didn’t have someone preparing food for us which meant we had to figure out all of our meals, with no car. Our Airbnb was on a dirt road, at the top of a hill 1.4 km from the main road. We had some challenges! So many people have said to me since returning home “Amy, this does not sound like a vacation, relaxing or fun”, but honestly it really was.
The first day we were there we walked, a lot, we didn’t really have a choice. We got to know and understand the landscape of the area we were staying. It was a pretty interesting ecosystem, to be in the jungle but also right on the coast of the ocean.
We got a feel for the nearest town, Puerto Viejo, about 3km away and did a grocery shop of what we could carry. Mainly fruit for breakfast, snacks and drinks. The day next we tried to rent a car but realized that no cars were available and the nearest big city was 5 hours away and the likelihood of them bringing a car down for us was slim, so we rented a motor scooter to tool around the coast. I have never been a big fan of motorcycles but I have to tell you that zipping along the Caribbean coast on that thing was quite exhilarating!
On the third day there I remember saying to Patrick “Today was the first day I have woke up and my first thought was NOT, you have a brain tumor”. Hurray for vacations! Honestly we were so busy trying to figure out what to do, how to get money, where to eat, enjoying the walks in the beach that there wasn’t much time for anything else, my brain was adequately occupied.
As we relaxed and enjoyed the sounds of the jungle, namingly the howler monkeys, I began to ponder the concept of creating a life that you do not need a vacation from. This is a common philosophy that is rampant in our culture right now, it’s all over Facebook and Pinterest.
I started to romanticize the concept of moving somewhere else, anywhere but my real home and living a life with no constraints, somewhere that didn’t feel like groundhogs day. Wake up, work, laundry, dishes, bills, grocery shop, take care of animals and other small people, sign permission slips, drive small people around so they can live their best lives, go to sleep and repeat and repeat and repeat…
Being on vacation in a beautiful foreign land allows your mind to travel (pun intended) to this space easily. It’s easy to get carried away into the vacation mindset of no worries, no cares, relaxation (except when you are trying to use Google translate or wondering if you should be wearing a mask in the mist of the Covid19 breakout). Given what I have been dealing with the last few months it’s a no wonder that I want a break from that, a break from the decisions, the worry, the unknown. As my mind wandered and I started to envision a life of constant travel, or maybe a life of being settled somewhere else, I realized that no matter where I go this will eventually follow me, the reality of having to pay bills, make money, carry health insurance, school our children, live with a brain tumor, it will all still be there. At one point in our lives my husband was very motivated to sail around the world. We talked about homeschooling our kids on the boat, the exciting adventures we would have, the ports we would enter and the sights we would see. But we would have also encountered groundhogs day on the boat, who’s cleaning the bathroom, who is making dinner? I don’t see a way out of the daily life, the daily stressors, obligations, responsibilities. I actually love my daily life, my job, my kids, my partner, but sometimes it’s a lot. Thank goodness for vacations and real escapes if only for a temporary time to allow our mind and body to hit reset and begin again.
In the end I was super happy to have made the plans I did. We had a terrific experience, felt totally immersed in the culture, learned a lot about international travel and most importantly got to spend time together without talking about brain tumors!
We had not made any plans ahead of time but once we arrived and were settled for a few days we decided to partake in the traditional Costa Rican activities such as zip lining and whitewater rafting. I may seem like a very adventurous gal, and I am , but not without mass amounts of fear attached. I am actually petrified of heights. Zip lining was a real reach for me. The site we went to was 260 feet in the air, we were in the canopy of the jungle. It was beautiful, but terrifying. There was another mom there and she got up on the platform, freaked out and decided not to go. I had a lot of reservations, but I kept thinking about brain surgery and how I would have to face my fears surrounding that if I needed to have it done, that I would need to trust the process and that in the end I would hopefully be better off for having had the experience. With that, I let go and rode the zip line, not without a lot of screaming from me and laughing from the spectators.
Our last stop was a 15 hour layover in Mexico City. What I really wanted to do was to go see where the monarch butterflies migrate to in the winter. The mountains were about 2 hours away and then a 1.5 hour horseback ride up to where the butterflies congregate. A week before we left a butterfly activist who ran one of the sanctuaries was killed by the cartel because they want the land for palm oil. So the long of the short of it was that we decided not to go there. So I randomly chose a location to go sightsee and we hailed an Uber and got dropped off at a beautiful cathedral which happened to be the center of a cultural festival (unbeknownst to us). Awesome doesn’t begin to explain what we encountered. Amazing architecture, mass amounts of street food,handmade fares, dance demonstrations and my favorite, the prayers to Our Lady of Guadeloupe. We stumbled upon these older woman swatting people with leaves and swinging incense around them and I said to my husband “I don’t know what is happening, but I want in on it”. I sat down in the chair and waited for the magic to happen. An older Mexican woman hit me with leaves over and over while saying prayers, I think I heard the word protection somewhere in there. Then came the neck massage and the crack to my neck, I was not expecting that! All I kept thinking through the whole thing was “please make my brain tumor disappear”. I paid her some pesos and went on my way. We turned the corner and discovered a huge group of people dressed in traditional Aztec garb. Many of them were also performing these prayers and rituals of protection, sooooo I did it again. I mean if it works then it was worth it right? So if my next MRI scan comes back clear I will know it was the blowing of the conch shell in my ear and the prayers to Guadeloupe!
We finally arrived home and life got back to normal quickly. One week later I went for another MRI. This time of my neck, spine and lumbar spine. It was 2 hours in the machine, aka coffin. I had no idea it would be that long, but I managed to get through it by meditating the entire time. Surprisingly I actually put myself to sleep at one point. This scan was looking for drop metastasis, thankfully my results came back and it was clear. I won’t know until June if the witch doctors voodoo worked to make the brain tumor disappear, here’s to hoping.
Today is Valentines Day, I can’t think of a better day to ponder those we love and what they mean to us (except maybe every day if you are into mindfulness, lol)!
From the day that this all began for me I have been shown nothing but love from everyone I know and care about. First and foremost my husband, Patrick. I called him at work crying when I heard the words “mass in your brain” and he immediately stepped into “let me help and do something” mode. He has given me the space to sort through this muddled mess of a time, all while being mostly patient with me. I’m not sure how I would have handled this if the shoe were on the other foot. What I do know is that I am happy to have him by my side sharing in all of it, the good, bad, ugly, etc… (isn’t there a song about that)?
Let’s talk about friends and how many of my friends have let me bend their ear with way too many details about this whole rigamarole and never once said “enough of all this”! Nope, instead they sent me cards, jewelry, bread pudding, accompanied me on hikes at my favorite spot, met me for tea/juice/lunch, gotten me out of the house and out of my own downward spirals and lifted me with positive thoughts and told me to keep fucking going. I truly am so grateful for all these beautiful people and moments that I have been able to share in the past two months.
So this is where I will admit that I have not done a great job of making friends at work. I am friendly, but I am not one to go out with people from work. I don’t do happy hour, casino runs, dinners, wine parties, really anything outside of coming in and doing my job with a smile and heading home. So it has been particularly incredible to me how many coworkers have shown me immense amounts of kindness. Today one of my coworkers brought me her recently deceased mothers prayer shawl. I can’t imagine how special that must be to her and she really wanted me to have it.
Another coworker gave me a very special medallion, it belonged to a patient and was gifted to her. When I shared with her what was happening with me she didn’t hesitate, she put her hand in her pocket and pulled out Father Baker, she told me to pray to him, I’m not one to argue with friends so I did as I was instructed. I may have rubbed his face off on the plane ride to NYC, which was the most turbulent flight I have ever been on.
Last but certainly not least has been my family, constantly calling and checking on me, signing me up for restorative yoga because they know I need it, offering to take care of my kids so I can go to appointments, second opinions and maybe Costa Rica for a week!
A friend recently posted an article on Facebook that was entitled “Wanna feel loved? Get cancer”. It was a good article and hit home for me. After I started to share with friends what was happening with me I had more invitations to lunch, coffee, drinks than I have since I was a mom (you know the good old days where your calendar isn’t booked up with all your children’s activities). I’m not complaining, I love to chat with friends and catch up. What did strike me though was how sad I felt that this really is what our culture has come to, we are all so busy (I’m not excluding myself from this) that we don’t have enough time to fit in all the things we would love to do, and often that means friends get short changed. For every friend, colleague, patient, family member who has taken time out of your day to just shoot me a few moments of your day I want you to know I appreciate it, I see you and I know that I am loved and so are you. 💕
This was the last visit for opinions. We have already visited the 10th ranked hospital in the country (Cleveland Clinic) and the 4th (NY Presbyterian) and today was reserved for the best in the country. Saving the best for last!
We met with Dr. L who is a neurosurgeon and happens to be running a long term study in subependymomas. He is an expert in skull based tumors and has performed over 1,500 surgeries. He was very kind and personable which almost made up for the 3 hours that we waited to see him. He explained that he believed that the brain tumor I have is a subependymoma, which is great news. Of all the potential tumors I could have this is the most desirable. He told us about the study that he is conducting on subependymomas and he happens to be collaborating with Columbia where we just were on Tuesday. He also asked me to participate in their study, which of course I am happy to do.
Dr. L explained that in the study so far they have had 50 patients from John Hopkins who have been diagnosed with subependymomas and of those only 2 people have had surgery because their tumors were growing. After surgery pathology determined that those patients did not have subependymomas, they had another type of glioma. That means that they have been correct in diagnosing 96% of the time thus far.
Dr. L has a hypothesis that people are born with subependymomas. He believes they could be some variant of “normal” if it is true that some people are in fact born with them.
The last 2 questions that I asked him were these; have you had any patients who have developed hydrocephalus and have you had anyone else who has presented with their tumor in the roof of their ventricle (they usually occur on the floor). His answers were no, no one has developed hydrocephalus. If he did have a patient develop hydrocephalus he would not recommend the procedure that Cleveland discussed. He said that it would be a bandaid and not really deal with the root cause and that in such a case he would remove the tumor surgically which would resolve the excess accumulation of fluid. To question number 2 he answered yes, he has had a patient who had a tumor in the roof of their ventricle. That patient was one of the two patients who had needed surgery because their tumor was growing and it wasn’t really a subependymoma.
He wrapped up our visit with recommendations similar to Columbia, close follow up to watch for growth and after a few years if we see nothing then we can be fairly certain that it is in fact a subependymoma and I am in the clear.
On the way back to the car I was quiet. I am a verbal processor, I talk my way through every issue I have. Except for this. This is the first time in my life where after every appointment I have needed time to really absorb and process what had just happened before I could talk about it. This is different. It has made me realize that one really cannot predict what they would do in any given situation because until you are there it is just speculation. I would never imagine that I would need so much space and quiet time.
When I was ready to talk Patrick asked how I was feeling and I hesitated and said “Well I can’t help but to think about the patient who presented like me with a tumor in the roof and it turned out that it wasn’t a subependymoma.” My husband quite literally put his hand on his head and sighed the biggest sigh you could imagine and said “Amy, we have traveled to 3 top hospitals in the country and you have been given the same news by everyone. They all believe your tumor to be a subependymoma. What is it going to take to convince you”?
This poor man to have to deal with me. He’s not wrong. I’m not convinced. I want to be. I am very hopeful and optimistic that I am in the 96% and yet….
This is a funny phenomenon. I was thinking about how when it comes to our health we often have a completely different reaction to statistics than in other areas of life. When I hear that there is a 90% chance of rain I assume it will rain. When I hear that there is a 96% that my brain tumor won’t cause problems in the future I think “I’m not so sure, what about that 4%”. I’m not sure if this is because I literally work in a world of the statistically insignificant with fatal consequences and numbers less than 100% don’t bring me comfort. Perhaps it’s because I haven’t made total peace with my own mortality. Maybe I’m more of a pessimist then I think? I’m can’t tell you exactly, what I can tell you is that I know I am driving people mad! I’m sorry friends.
I also have been thinking a lot about my decision to call my blog “Evicting Roxanne”. This is was a presumption on my part that I would have surgery, that I would chose that path, that there was no possibility of living with something like this. We can chalk that up to another part of this process in which I have grown.
The truth is that this experience is a microcosm of life, it’s complicated, it’s messy, it has highs and lows and in the end it shows us our strengths and weaknesses.
Today is the day I have been waiting for. My husband and I woke up at 3 am to catch the first flight out of Buffalo into New York City. I was equal parts nervous and excited. I can’t explain why but I was putting extra weight on what the doctors at NYC had to say over Roswell and Cleveland. Maybe it’s because it’s the 4th ranked hospital in the country for neurology, maybe it’s because we had a connection to the doctors through a friend, I can’t exactly put my finger on it but I was anxious to hear their opinions. My stomach was in knots, we went to an amazing bagel shop (of course it was amazing, its NYC) and I couldn’t finish what I bought. I couldn’t finish my coffee even though I was exhausted. I just wanted to get through these consults.
When we arrived at the hospital it was a bit comical for me. They had just implemented a new electronic medical record system (Epic, get ready work friends!) and everyone was very stressed about it. Working in healthcare has taught me to be extra patient in these situations.
The first doctor we met with was the neurosurgeon, he had a VERY fancy office which radiated “Im hot shit and you should value my opinion”, and we did! Dr. B was very tall and kind. He showed us my most recent MRI and explained why he thought it was the type of tumor that they believe it to be. At this point the consensus is that this is a subependymoma.
That my friends is the best possible option of all the tumors that it could be. They are ridiculously rare, benign and the slowest growing. This is great news but I will take a moment to explain that just because a brain tumor is benign doesn’t mean that it doesn’t cause problems for people. I have learned a lot over the last 2 months, for example most brain tumors are benign, only around 30% are malignant and they are the ones that everyone fears getting (most notably glioblastoma). Benign brain can reek all kinds of havoc on people’s lives. The list includes epilepsy, stroke like symptoms, blacking out, double vision, issues walking, lactating, migraines, constant nausea, the list could go on and on. Anyway I bring this up because prior to being in this situation I did not realize any of this and frankly probably didn’t have empathy like I do now. Like many things in life until we gain first hand experience we just don’t understand what others are going through. For me this is more verification to stop being judgmental because there are a lot of paths I have no clue about.
Ok so to get back to the appointment. Dr. B felt that since I am not showing any signs of hydrocephalus (accumulation of fluid in the brain) that we should not do surgery right now. He explained that we should continue to monitor me closely and if there is any growth if the tumor then we should do surgery then. He had a lot more confidence about removing the tumor then Cleveland did, and his rate of postoperative neurological complications was much less than what I had read in the litterature. Phew!
Time for the neuro oncologist. My heart stopped for a second we we got off the elevator and a huge sign stated that we were at the “Glioblastoma Center”. I looked at my husband and said “I don’t want to be here, I don’t want to be at the brain cancer center. This is literally the place that no one ever wants to come to.” Down the hall we went, and met our first doctor, a wonderfully sweet fellow named Peter Pann.
Dr. Pann was lovely and had an amazing bedside manner and spent a good long time with us while Dr. I was looking at my MRI. Then they sat us down and reassured us that my tumor does not appear to be aggressive in any way. They believe it is stemming from my fourth ventricle and not brain tissue (that is great news) And it is possible that it might have stopped growing years ago and I may never have a problem with it. They agreed that I should be followed closely having another MRI in 3 months and then every 6 months for 3 years. If there is no change after 3 years we can assume that it has stopped growing.
There was talk of putting me in a study about subependymomas which I am completely open to. I am an information girl and always go to the research when I want to understand something . I would happy to be part of helping others in future to better understand their situation. Hopefully they call me and I can participate.
Dr. I did have some concerns about my memory loss and suggested that I go to cognitive therapy, I will tackle that after my vacation (if I remember)!
All of this news called for a celebration drink! So off we went to Chelsea Market.
When we arrived home there was a book waiting in the mailbox for me. I had started to read it online and decided it was worth putting in my library. Until further notice this is my new story, I am living low grade. Hopefully for a really long time.
I have one more appointment, Friday I am heading to Johns Hopkins. I realize this might seem like overkill to some but it’s my brain, not a toe! Until then…
Last night I took a wonderfully relaxing restorative yoga class, complete with candles and chanting music, it was lovely. When I arrived home my very adoring husband met me in the driveway and said “Come on let’s go to the movie store and get a rom/com”. Huh? A rom/com? Really? “Yes, you like those”, he replied and off we went without any argument from me.
The movie store was empty so we were given a lot of attention by the salesman who walked the store with us and tried to help us find a movie that was appropriate for the whole family. There were two that he recommended and one had a dog so I chose that one, The Art of Racing in the Rain. Disclaimer, if you have not watched this movie and want to be surprised turn back now and stop reading the rest of the post!
All I knew was that this movie had a dog and I thought I had heard it was a book turned into a movie and people said it was good. Anyone who knows me knows I don’t really follow pop culture too closely and that combined with my horrendous memory makes choosing movies a bit of a crap shoot.
So we know in the first scene that the dog is going to die, I’m not spoiling anything here it really is that obvious.
I can handle a dog dying, as a matter of a fact I began thinking this would actually be good for me because I have been questioning if I am even capable of crying anymore. Since starting the anti anxiety meds I have felt a lot less anxiety (thankfully they are doing their job), but I have also felt a lot less sad and I’m not always convinced that is a good thing. You see I am a full experience kinda girl. I want to feel ALL the feelings, good bad, every single bit of it, just a tiny bit less worry! So anyway since I haven’t really had a good cry in a while I figured this would bring some things to the surface and show me that I am still whole.
Here is what I didn’t expect. About halfway through this movie the mom starts to feel sick and the dog immediately knows that something is not right with her, he can smell what is happening. I looked at my family and said “Oh my God, the mom has a brain tumor”! Seriously? How is it possible that of the hundreds of movies available I chose the one with the mom who has a brain tumor? I know exactly how this is possible because my patients talk to me about this all the time. In their cases it is movies about babies dying, stillbirth, miscarriage. No matter what they put on tv to distract themself somehow it finds them, the same way that this movie found its way into our dvd player.
It goes without saying that the mom dies, then the dog dies. The last time I cried this much through a movie I was watching Stepmom, if you have seen this movie then you understand there is just no way around it.
Back to last night. So it goes without saying that I ugly cried, and my kids hugged me a lot (this was the first time I have really showed any emotion about this in front of them). Yes, I had a discussion with them about the fact that the mom in the movie probably had a very aggressive brain tumor based on what we saw transpire with her, and that is not what I have (at least I hope not, fingers crossed for a good scan this week).
I have worked in the world of grief for eight years now, every day is death, grief, & loss. Working so close to death by default makes you consider your own mortality in a way that the average person is probably not accustomed to. This isn’t new for me or uncomfortable. But it has never felt as close to home as it does now. Even though it may still be, and hopefully is VERY far away. Something I have learned over the years by working so closely to death is that all we are guaranteed is today, right now, the present. I try hard to pay attention to the small details, to enjoy the moments and to not take them for granted. The dog in the movie stated that “The good driver knows not to dwell in the past or the future but to focus on the present”.
Some days it is a struggle to completely focus on the present but that is my goal, to continue to notice, wonder, revel, and enjoy the moments I am given. Also, I’m taking recommendations of shows that do not involve moms dying from brain tumors!
Today we met with a neurosurgeon who specializes in posterior fossa tumors. We were finally able to actually see my original MRI.
Sadly because Dent was unable to do their jobs correctly, the disk was empty that was supposed to contain the most recent MRI with contrast (insert many swear words here). Perhaps this is why people become type A, maybe they have learned that if they don’t do things themselves they won’t be done. I digress…
So Dr. K explained how my tumor is on what he referred to as “no mans land” (very reassuring) and that there was no easy path to surgically remove Roxanne. If he used the upper route then he potentially would not be able to reach the bottom of the tumor.
If he uses the lower route then the angle isn’t right to reach the top of the tumor. He did say that if the tumor does continue to grow that it could create a pathway for removal that is not currently there.
Dr. K is fairly confident that the tumor is not cancerous but agreed to do an MRI of my spine just to make sure there were no “drop metastases” anywhere. Since I am having a repeat MRI next week he suggested that we review that and if there is no change then wait another four months and MRI again to keep on eye on it. In the meantime he will take my case to the tumor board and see what their consensus is. Wait! What about hydrocephalus?!?! Well Dr. K has a plan for that too. Apparently if I develop any signs of hydrocephalus then then can take a small camera and drill into the top of my head and navigate the camera down through my 3rd ventricle and create a new path for the cerebral spinal fluid.
To be perfectly honest this was not how I wanted this visit to go. What I wanted in an ideal world was to be told that I should have surgery and that the complication rate was low and that I was in very experienced hands and I shouldn’t worry. I suppose MicK Jagger was right and you can’t always get what you want…
I have promised my husband I will stop researching until we go for our next opinion in NYC, wish me luck… 😂