Down with New Year Resolutions

I have never liked New Years. In the beginning my dislike stemmed from a place of disappointment. I was a soap opera watching tween/teen and when I attended parties on New Years it was never like it was portrayed on television. No one was dressed as fancy, the ambiance was dull, it just never met my expectations based on what tv taught me it was SUPPOSED to look like. Then as I got older and wiser I realized that all of that was insignificant compared to the real meaning of what New Years represents. A time of new beginnings, of being the person you want to be. A time to get yourself back on track, eat well, exercise , spend more time with the people you love, be more grateful. All of these are wonderful notions and without a doubt most of us have have things we need to work on. What I reject is the notion that we only do this on New Years. I have always felt that every day we wake up is a new opportunity to start again, to make changes, to be the best version of ourself. I hate the notion of putting that off because I’ll just wait for some ambiguous date in the future to make it happen. This year in particular has made this more of a reality for me. I was reading last night about the surgery I will need to have. Texas MD Anderson Cancer Center has preformed 55 of these surgeries in 18 years ( obviously not a widely preformed procedure), no one has died however 45% of patients had at least one major neurological complication post surgery. What if that’s me? I don’t want to put off what I could do today or any day for that matter in the hopes that tomorrow will be the day when I finally get my act together. Don’t mistake this for wanting to be “perfect” because I firmly believe that word should be removed from our vocabulary. What I want to be is satisfied with how I show up today. When I lay my head on my pillow each night I want to believe I did my absolute best today, and tomorrow I will try again. I will not give up if I stumble and wait for New Years next year, I will begin again every day.

Doing Hard Things

I really didn’t want to go anywhere. I wanted to curl up in bed with my new weighted blanket, turn on the fairy lights in my bedroom and just sleep. However, we had already made plans. We were going to overnight camp at our new leanto that my husband had painstakingly built this summer.

What’s a leanto you ask?

Our beautiful leanto built by my husband.

It’s a three sided structure that you sleep in. We happen to have one of these in the Adirondacks. The plan was to do our first winter camp with the kids this year. Then we were going to reward them with a trip to a hotel for being good sports. When we made the plans we didn’t know about what was happening with me and frankly now that we did know I just wasn’t in the mood. It’s a lot of work to get all the gear together, set up, clean up, and wash it all when you get home. I suggested my husband go without me and I could just use my alone time to get into a better head space. Nope he said, you are coming with us. So away we went.
We didn’t expect it to be so unseasonably warm, still chilly but nothing compared to what it can sometime be like up there at this time of year. We decided to tell the kids what was happening so that they didn’t overhear us talking and get worried, this way we could control the narrative. I snuggled them up in our sleeping bags and had the conversation. We were very positive and upbeat about the whole thing and the kids responded accordingly. Laurel asked if I died if she could get a rabbit and Andrew said he would like a Mac book.
I think part of what was happening is that having a mom who is a grief counselor means you by default hear a lot about death, so I think my dark, sometimes inappropriate humor has been passed along to them.
That night they both snuggled in a little tighter than normal.

The next day we hiked Camels Hump mountain in Vermont. The last time we hiked this mountain was 14 years ago, pre children. We did however have our dog Gypsy with us. She was like my first child and she lived to be 14 years old. It seemed like it was finally time to let her ashes go and this was the perfect place. I know there are many lessons to learn on this journey and one of them is that I need to stop putting things off, like letting Gypsy go. So up the mountain we went determined to reach the top because I wanted her to have the best view possible. When we reached the top I knew immediately we had made the right decision to bring her here. I imagine heaven to look a bit like the top of a mountain in winter, maybe just a bit warmer!

Approaching the summit of Camels Hump.
Gypsy’s final resting place.

I needed to climb this mountain this week, I needed to be reminded that I can do hard things. Hard things like tell me kids that I have a brain tumor. Hard things like sleeping outside in the winter. Hard things like climbing a mountain when you would rather be snuggled up in a blanket by the fire. Life is not supposed to be easy, there was never a guarantee of that.

Second Opinion

My friend sent me this video and this may or may not have triggered the depression phase for me.

The range of emotions that you go through as you are facing a serious life altering diagnosis is absolutely surreal. I am a grief therapist, death is in my face every single day. I try my hardest to live from a place of mindfulness, being in the moment and not wishing for a phase to be over or longing for times gone by. I recently went through a life threatening illness with a close family member, I thought I understood. But it turns out I didn’t.
I went to the appointment on December 24th to review my MRI scans with the neurologist. Suffice it to say, this is not his area of speciality. He explained that I had a tumor in the 4th ventricle of my brain. He could not tell me what kind of tumor it was or how long it had been there or what it would do in the future. He believed it to be cystic and I shouldn’t worry.

When I asked him what I should tell my family he said “tell them you have a lump”. When I told him that it was very scary to get this diagnosis and that I felt he should have called me himself he didn’t even bat an eye, “If I thought it was serious I would have called”, so I reiterated that anyone being told that they have a mass in their brain is going to think it is serious, that maybe he was desensitized to this work and should consider his patients perspective. He did not agree. Dr.A and I said goodbye, forever.

By chance I happened to have needed to take my daughter to the pediatrician that afternoon, he also happens to be our family doctor. While I was checking in at the front he came out and said “Amy, I’m so sorry, I just read your MRI, is it benign? Do you want Xanax”?
I explained that we didn’t know enough about the tumor yet to say for sure and yes I would like an anti anxiety med, I’m not screwing around this time. I know my limits and this has exceeded my ability to remain calm, cool and collected. Off I went with my prescription for Lexapro and promptly popped the first pill the minute I walked into the house.

Lucky for me my husband has an old friend who happens to be a neurologist at New York Presbyterian Hospital. We called her for a second opinion. She does not specialize in brain tumors but knew who to put us into contact with. They reviewed my MRIs and felt that it was in fact not cystic but rather something else and that I should not wait 3 months but 6 weeks for a repeat MRI. Three specialists at New York Presbyterian had 3 different opinions. One felt it was a subependymoma, another thought it was a “weird” subependymoma and the last felt it was a low grade glioma.

I will insert a break so you can Google now 😂

Subependymomas account for 0.2-0.7% of all brain tumors diagnosed and one of these guys believes mine to be a “weird” type. Good grief.
It apparently is weird because they usually grow from the floor of your 4th ventricle and mine is growing from the roof. They also said that the tumor is pushing slightly on my aqueduct but not enough to inhibit cerebral/spinal fluid from being properly circulated.
It appears that at this point the surgery is probably the best option. Want to know what that would look like? Don’t watch if you are squeamish.

I have an appointment on Jan 2, 2020 with a neuro oncologist here in Buffalo and will then be making plans to fly to NYC to go see the doctors at New York Presbyterian and Sloan Kettering. Until then I’ll be scrolling Pinterest for a new haircut.

7 days long…

The last thing that that the nurse said before we hung up after the news of “you have a mass on your brain” was that I needed to have another MRI done, this time with contrast to better see what was happening inside my brain. The last MRI took forever to get insurance approval and I was clearly very anxious about having this second one done, sooner rather than later. The onslaught began of way too many phone calls to my insurance company and the doctors office. This is also when my anxiety really started to ramp up. The not knowing what is happening is absolutely maddening. Sadly, I am no stranger to anxiety. I struggled terribly most notably after the birth of my second child. I suffered from severe postpartum anxiety, looking back I probably should have gone on meds, but I was too stubborn. I was 100% committed to be the crunchiest, granola mama on the planet, (insert eye roll here), and hence I suffered way more than I needed to had I just given into a temporary bout of anti anxiety meds. I know better now, and the amount of anxiety I am already having lends me to believe that will soon be a reality for me.

I guess I should address why I had the original MRI. I had been having pain in my neck for more than a year, pain that was so chronic I was beginning to understand how people can become addicted to pain pills. I also have been suffering with some memory issues. I had also been complaining to my husband about tripping while walking up stairs. The original doctor that I went to see was a neurologist that specialized in memory issues. On my first visit he asked me to differentiate between a horse and cow and because I could draw the face of a clock I was sent away with a clean bill of health. So I made another appointment with the P.A. and after she really listened to me decided that maybe an MRI was reasonable to at least rule out anything major. I was half expecting them to call and tell me that I had early onset dementia. There are family vacations I have no memory of, I never have a clue as to whether I have already watched a movie or not, did I read that book already, not sure.
Obviously that was not the call I received, I was instead told that I had a mass.
I ended up going back for my second MRI, the one with contrast on December 19, 2019, 6 days after the initial MRI results were given to me. Yes I did take 5 doses of CBD oil to calm my ass down, and no I am not claustrophobic until I get into an MRI machine to tell me what this mass in my brain is.
I was told when I left the MRI that I would be called the following day if they saw anything, so I waited by the phone with baited breath. They didn’t call and it was a Friday so at 3:30 I called and asked for my results. A nurse pulled up my chart and said “oh” and then told me someone would call me back. 30 more minutes and no call. I called again, I waited on hold for 20 minutes and then the nurse who answered accidentally hung up on me. I called again, this time I waited 25 minutes on hold and when I finally got through I nearly lost my mind. The nurse explained that my second MRI showed an enhancement of the mass and that I should have another MRI repeated in 3 months.
That was it, no sense of urgency, no concern, nothing.
I asked why the doctor did not make the call himself and she had no explanation, she did however hang up with me and called back 5 minutes later to say that the doctor would meet with me on December 24th to review both of my scans.
I work in health care and I have to interject that I could not image a scenario where treating a patient like this would be acceptable. There is no excuse for not calling a patient personally to give news of this magnitude.

This is when my angry phase kicked into gear. Elizabeth Kubler Ross talks about the 5 phases of grief, her research is actually about one facing their own death not when you are grieving the loss of a loved one. The 5 phases are denial, anger, bargaining, depression and acceptance. Anger was in full force for me for about 12 hours straight. I was so mad at the doctor for not calling, I was mad at the universe, I just wanted to be mad. While the house was empty I was vacuuming and I started to yell and scream at the top of my lungs and smashed the vacuum right through the kitchen molding around the base cabinets (no one said this would be all unicorns and rainbows right).

The fact that this was all happening around the holidays was both a blessing and a curse. The upside is that this is a busy time of year and there are lots of activities to distract oneself from the mental chatter. The downside is that is is that the holidays and you don’t want to be Debbie Downer in front of your loved ones, or burden them with this new information which feels really big but you don’t have enough information to really share because you don’t even know what to say yet. But you are scared and need to process. Do you see how the spiral begins..

You have a mass…

December 13, 2019 which was a Friday by the way, started off like any other morning. I got my kids on the bus and was gathering my work supplies up when I received a phone call from the nurse at the neurologists office I had visited. “I am calling with your MRI results” she said. “It was abnormal, they found a mass, but don’t freak out, they said it is not emergent. Your brain looks like it has abnormal lesions and fluid. Do you have any questions”?

I was speechless. I didn’t have any questions because it was so unexpected that I literally did not have one clue about what to ask her. “Ok, I replied, thanks for letting me know” and we hung up.

And then I cried. Cried like when you watch the movie Stepmom and the mom dies kind of cry. The timing of this phone call could not have been worse, you see that evening I was holding a Candlelight Vigil for my patients at the hospital I work at. I am the coordinator of perinatal bereavement of a hospital in Buffalo New York and each year we hold a beautiful event for families right before the holidays. A night for them to reflect, honor and pay reverence to their baby who has died. I run the service and give a speech each year, something that is hope filled, inspirational, up lifting. And I just got a call that I have a mass on my brain. I had no idea how to separate my own experience in this moment, so I cried some more.

On the drive to work I decided that if ever there was a time when I would need to implement some of the techniques that I teach clients it would be now, so I stuffed all my anxiety, worry, terror in a “box” and went to the service and spoke from my heart.

I didn’t cry at the music like I normally do, I just sat stone faced, wondering if my family would be attending some similar type service next year to remember me.
I quickly conjured up every person that had every uttered the words brain cancer/ brain tumor to me. “I had a friend who died of a brain tumor”, these were the people who could help me, I hoped.

A coworker who had too much experience with brain tumors suggested that I name it. I immediately knew her name, Roxanne . I don’t know why, but I do know that’s her and she needs to go.

One of the handmade ornaments at the Candlelight Vigil, a message of hope.


Evicting Roxanne

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 ❤️

Hi, I’m Amy ❤️

I am an average every day working mom/wife/daughter/sister/friend.
I have a wonderful supportive husband Patrick who I have been married to for 15 years.

Patrick and I out for date night

We have two beautiful children together, Laurel (15) and Andrew (13) and I am a stepmom to Alex (29).

Alex, Laurel & Andrew

We have two dogs and two cats, but our picket fence is not white!

Jasper our very snuggly but sometimes bad cat.
Olive, worlds best mountain hiking dog.
Finnegan, our Covid puppy.
Margo,the newest baby of the house. She is giving Laurel is a run for her money in being the spunkiest of the house!

I am a therapist who specializes in perinatal loss and pregnancy and postpartum mood disorders. I love working with women and families and helping to empower them to grow together through difficult times. I also work as an independent contractor for a company where I travel around the country and speak on perinatal loss.
In my spare time I enjoy hiking and camping with my family, walks alone in woods, photography and hanging out with my kids.
I decided to start a blog after my diagnosis of a brain tumor because I feel that this will be an easier way to give information to all of my family and friends without having to text a book to each person every time they want an update on what is happening with me. I am hoping to be a resource to others who have to go through this in the future. My goal is to lessen my own anxiety as I try and navigate this very scary unknown road.
Thanks for joining me!

Hiking Camels Hump in Vermont. December 2019