Jumping to Conclusions

Its been a rough week mentally for me. On Wednesday I went to my local hospital and tried to get a copy of an old CT scan from 9 years ago. Both doctors here in Buffalo had asked me if I had ever had a previous MRI at any point in my life. They both suggested that I may have had this tumor for decades and since I am “asymptomatic” (in their opinions) that this might not be a big deal. The woman at medical records kindly explained that they only keep scans for 6 years and mine was already destroyed. However there was a report in my medical record and I could have that. When I looked at it, it was no help. She saw the look on my face when I was looking it over and asked me what I was looking for specifically so I explained. “I was diagnosed with a very rare type of brain tumor and I’m trying to figure out if it has always been there or if it is more recent”. She told me that there was a room full boxes of old medical records waiting to be destroyed and she would look to see if my full record was there. Bless her, it was.


The full report showed that I had no lesions/masses/calcifications, nothing… That means that this tumor has not always been there and it is something that has developed in at least the last nine years, but maybe 6 or 3, there is really no way to know when it started.

It wasn’t until the next day that I started to put the pieces together and that’s when I got worried. The doctor from Roswell told me that when they put my MRI up on the screen there was unanimous agreement that it was a subependymoma. He told me it was slow growing. I asked how slow growing, that is a very subjective term. He said 1mm every 1-2 years. Ok I thought, that doesn’t sound too bad, but, this thing is already pressing on my aqueduct so how many more mm would it need to grow before I develop hydrocephalus? Well that was before I had the old CT scan results. My tumor is 17mm x 9mm. If that tumor is less 9 years old then it is absolutely not growing at average of 1mm per 1-2 years. That means it is more aggressive.


My husband says that I can’t jump to conclusions because I have incomplete information. I wish I could say that I have been successful and that I haven’t been worked up, but that would be a lie.


One of the doctors I am going to see at NY Presbyterian thought it was a low grade glioma. Until this week I had completely put that out of my mind, mostly because it was the scariest of all the potential differential diagnoses that were on the table at this point. But now I felt the need to revisit that idea. I don’t like it, it’s giving me crazy anxiety.

So until Wednesday when I can go to Cleveland Clinic and ask a thousand questions I’ll be hanging out with my cat giving myself pet therapy.

The worlds best snuggler.

Gratitude

Today my spirit is overflowing with gratitude. I feel so lucky to have so many people in my life that care about me and have gone out of their way to help ensure that I end up in the hands of a skilled neurosurgeon. 

We live in a time where the word privilege is thrown around quite a lot,  today I am feeling that privilege more then I ever have in my life. This makes me both grateful that I happen to be in this position but also sad for others who I know do have the same kind of options. 

Thanks to the many supportive friends and family that I have, we have secured appointments to see the top neurosurgeons at Cleveland Clinic (Jan 22), NY Presbyterian (Feb 4th) and Johns Hopkins (Feb 7th). Without people holding my hand on this journey and offering their support this would not be possible, and while holding space for that gratitude I also began to think about 14 years ago when I went on a mission trip to Philadelphia. 

I was in my last semester of my bachelors program and had found out the day before I left that I was pregnant with my first baby, my daughter. I was excited to be part of this trip. I have always been a seeker of experiences and I couldn’t wait to meet people who I knew would have a lot to teach me. 

I did learn a lot on that trip, I learned about the resiliency of the human spirit. I also learned firsthand about privilege. One of the days I spent there was at what was essentially an adult daycare, people came for the day and were entertained with games and crafts, snacks and companionship. On this particular day there was an elderly man who was about 70 years old, he began to have a tonic clonic seizure, and I being young and inexperienced in what working in a poor community meant didn’t understand why no one was calling for help. I got very upset and one of the workers pulled me aside and said “darling, we don’t call an ambulance for people like him, we lay him down on a couch and hope it stops”. No one had meds for him, no one had love for him, it was one of the saddest experiences of my life (and we all know I have had a lot of sad experiences). There was no family to call to come and get him, to let them know that he was not doing well, there was just nothing. I have thought a lot about that experience at many different points in my life, but last night and all day today I haven’t been able to stop thinking of him. Thinking of all the people who do not have access to good health care let alone the best health care, all the people who don’t understand how our health care system works and how to navigate it, all the people who don’t know to get a second opinion or don’t have time. I am privileged and I know it. I own it. I also am very grateful, this is not something I take for granted. 

Knowing that I have a very rare type of tumor is terrifying, it would be easier to hear “we do 10 of these surgeries a week, this is no problem”, but that is not my reality. A small weight has been lifted knowing that I am seeing some of the best doctors and hopefully 2 out 3 of them agree on a plan moving forward so I can find some peace. 

Searching…

I heard back from Roswell. Their advice was to do nothing for now and rescan me in three months. Apparently when my MRI was put up on the screen at the tumor board there was resounding agreement that my tumor was a subependymoma.

Here’s the thing, I’ve been doing a lot of reading, and this is what I know as of now. The University of Texas MD Anderson Cancer Center did a 18 year retrospective review of patients with 4th ventricle tumors. There were 55 patients in 18 years who presented with a tumor in the same location as me (not all were subependymomas). Johns Hopkins conducted a similar study over 19 years and had 15 patients.

Texas MD Anderson is the number one ranked hospital for cancer. Johns Hopkins is the number one ranked hospital for neurosurgery. I wonder how many patients Roswell has seen with my type of tumor. They are ranked 14th in the country for cancer and do not even show up in the list for neurology (I scrolled through the top 100 and then gave up). I guess my point is that I am assuming that they probably have very little experience with this type of tumor and therefore I have very little faith in the guidance they have to offer.

The neuro oncologist there did agree to allow me to have a repeat MRI with contrast at the end of the month so that when I go to NY Presbyterian Columbia/Cornell and Cleveland Clinic I will have multiple scans for them to review and they can assess if there has been any change in the last 6 weeks.

I found a book called Living Low Grade, it was written by a man who was diagnosed with a low grade brain tumor (similar to mine) that was inoperable (not my case). He talks about the stress of knowing that something foreign is occupying space in your body, something that doesn’t belong there. How do you continue to live like you did prior to diagnosis and not attribute every ache/pain/twinge to your brain tumor growing? I think that is the space that I am contemplating currently. Am I capable of living low grade for a period of time, potentially years. I don’t know the answer to that yet. I think once we visit Cleveland and NYC and I have more answers about the risks of the very invasive surgery I would need then I will be able to better assess how I am feeling. Until then I’ll be on a yoga mat trying to restore some peace back into my body.

My favorite yoga studio.

Worry

As you can imagine I get a lot of well intended advice at this point on my journey. Most notably “try not to worry”. That flies off the tip of peoples tongues without a hesitation of what they are actually saying. Worry by definition is “a worried condition or feeling; uneasiness or anxiety”. Anxiety by definition is “distress or uneasiness of mind caused by fear of danger or misfortune”. I am going to go out on a limb here and say that feeling unease about the fear of brain cancer or the the fear of neurological complications from surgery would not be unwarranted. Actually, I wonder how someone would be given a diagnosis of a rare brain tumor and not worry, not be fearful? Sometimes it’s hard not feel like this guy below, like my worst nightmare has happened and now I’m just waiting to be eaten up and swallowed whole.

Other times, I don’t feel anxious at all. I feel super optimistic, I feel like “I’ve got this”. Some days I am panicky for reasons I can’t even put into words, it’s just a bad day.
Anxiety stems from the fear of the unknown and that is the landscape that I am negotiating right now, the unknown. This could go a few different ways. I could have surgery, recover perfectly and have a wonderful story to share about my new life perspective, or it could have a few more bumps in the road, bumps that I cannot predict, maybe bumps that never get smoothed out. That is the worry, events and circumstances that I have zero control over.
I know people have good intentions when they tell me not to worry, they are too are worried, they are concerned over both my physical and mental health, but when I hear this I always conjure up in my mind the meme below.

It’s the same concept for worrying. Telling me stop doesn’t help me to not do it. But what does help is having an outlet, like writing this blog, going out for tea/coffee, joining me on a hike, being an ear for me if I’m having a bad day. Worry is just another part of the process, I can’t stop it, I can’t completely control it so I oscillate between avoiding the fear and confronting it.

Yesterday a friend brought me lunch and along with it a very small bag. When I opened it what I found inside were 10 tiny worry dolls. This friend is a cancer survivor and said to me you need somewhere to put your worries so give them to these little dolls each night.

Guatemalan worry dolls

No one can take the pain and stress of this journey away, all you can do is walk along side someone as they learn to navigate this terrain for themselves, and I cannot express how grateful I am for all the people in my life who are walking alongside me.

We scheduled our second opinion visit to New York Presbyterian Columbia/Cornell for February 4th. We will meet with a neuro oncologist and neuro surgeon who has experience with this rare type of ventricle surgery.

Ritual

I woke up this morning feeling very peaceful, who knows why, but I’m not arguing when it happens. When I have moments of peace I just drink it up like my favorite chai tea. I sat on my couch for about an hour and watched the snow falling from the sky, watching the squirrels running up and down the trees, and I got to contemplating ritual. How ritual plays a role in our lives. What is means to us and how we make meaning out of our lives through ritual. One of my favorite rituals this time of year is to read the story The After Christmas Tree with my kids.

When my kids were very small I discovered this book on one of our trips to the library. The kids in the story are sad that the holidays are coming to an end. The parents decide to have an after Christmas party to help quell their kids sadness and the outcome is helping to feed the birds and wildlife, a way to give their tree a second life. The kids make bird feeders, string popcorn, and scatter nuts around the tree that is now placed outside their window so they can watch as others also get to now enjoy it.
The ritual of reading this book and then making bird feeders has been one of my favorites for over a decade. Now my kids are older and don’t really want to participate. I am committed however to rituals and especially this one. I know that many years from now when I am long gone my kids will talk about doing this every year, I hope that they will recreate this ritual with their children. I know that everything that we do will be not be repeated by our kids, but I do hope that some of it sticks and that there is sentimentality that will be carried along with it.

I borrowed my niece to carry on the tradition!

Ritual is what brings us comfort, it ties us to our history, our traditions. My desire is to entrench my family into a life rich with ritual so that as life changes and people come and go there is a constant feeling of security in the rituals that will continue to happen regardless of who is present.

Laurel and Andrew six years ago (2014) with our “after Christmas tree”.

On a side note the neuro oncologist suggested that I have a lumbar puncture (spinal tap) done to potentially determine if the tumor I have is benign or malignant. It is definitely much less invasive than brain surgery and could help me to make a decision about ultimately having the surgery or not. The idea is that the tumor should shed cells into my cerebral spinal fluid and that when that CSF is looked at they could determine exactly what type of cells the tumor is shedding. It sounds like a simple enough procedure so I will probably opt to go that route.

Pick a Tumor, Any Tumor…

ependymoma, low grade glioma, astrocytoma, subependymoma

Today was the first visit with a neuro-oncologist. Another doctor, another opinion on what kind of tumor it is. Today’s vocabulary lesson was the word astrocytoma. A quick internet search and I’m now more confused than ever.

https://abta.org/tumor_types/astrocytoma/

So basically subependymomas are a type of ependymoma. Astrocytomas are a type of glioma. All of these are possibilities but no one knows which one. Aghhhhhh.

The doctor we met with today was lovely, had a wonderful bedside manner and was very patient with all of our questions, and there were a lot. Because this doctor was not a neurosurgeon he was unable to answer a lot of our questions but is going to take my case to the tumor board at Roswell next week. The tumor board is a group of tumor specialists who meet bi weekly to discuss unusual cases. He will present my case and they will call me to tell me what they believe my best course of action is.
The biggest dilemma to consider is do you live with a tumor in your brain that may or may not at some point become problematic, or do you undergo major surgery that has a high likelihood of a major neurological complication in order to prevent a potential disaster in the future.

How does one make this decision? How do you weigh the least desirable potential outcomes of surgery against the least desirable potential effects of a tumor spreading? I don’t remember taking a class in high school or college that prepared me for this. I don’t have a phone a friend option because no one can make this decision for me. My husband says we need more information, that more data will help me to make a decision. I agreed and got 2 more copies of my MRI to send to The Cleveland Clinic and Johns Hopkins, maybe they will come back with 2 more opinions and muddy the waters even further. Until then I will be wandering the forest seeking answers from the trees or the whispering winds or whatever can help guide me through this painful process.

”The answer my friend is blowing in the wind”.

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.
Ummmm.
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..