It's not a toomah...they just call it a tumor

This whole epidermoid cyst/tumor thing can be quite confusing to people who have never heard of epidermoid cysts. NOW I (think) understand that an epidermoid tumor is an epidermoid cyst that occurs in the brain and that calling it a tumor distinguishes it from epidermoid cysts that occur in other areas of the body. Anyhow it makes explaining what I have to people kind of tricky because if I use the term tumor people usually think cancer so I need to clarify that it is not cancer and is benign. In contrast, if I use the word cyst people tend to think that it is something that is not so serious when if fact it is because epidermoid cysts are sticky and therefore quite difficult to remove....not to mention that I have something the size of a golfball in my brain (e.g. the control center of the body).

inspiration

12/14/2019

Today my husband and I brought out daughter to one of her favorite places, the Bridgewater library (a local library with lots of toys and wonderful books) and to our surprise it had been recently renovated and renamed "The Susie Beris M.D. Youth Learning Center" in honor of Susan Beris and her generous donation.. I saw that name and it seemed really familiar....i quickly made the connection that my role model for post brain operation is also named Susan Beris and a little research confirmed that the wonderful woman whom the children's library renovation is named after is in fact that same Susan Beris who underwent brain surgery for stage 4 glioblastoma and ran a 10k only weeks later!
inspiration
https://twitter.com/yale_at/status/1181929120697131008
On a more solemn note today is the 7th anniversary of the tragedy at Sandy Hook...my heart goes out to those poor children and their families, I do not understand how such terrible things can happen to sweet and innocent children. I cannot even begin to imagine what it would be like to lose my daughter, she is the light of my life and everything I do is for her.

Friday the 13th spells RELIEF

My husband and I met with Dr. P this morning at Yale Smillow Cancer Hospital and just as we suspected i have a "textbook" epidermoid tumor.

It was surreal being in a cancer hospital, seeing children and people with inconceivable diagnosis. One little boy we saw was being reassured by his mom that they "won't take blood in the tubes today"

Dr. P exactly what I had hoped for, straight forward, confident, kind, reassuring

• early riser
• coffee set up
• pro active approach 

Decided it was best to just get this over and done with so that we can return to normal life and hopefully have minimal impact on Maeve and a few other positives include

• cant drive anyway so why not get it done
• choosing to act now makes me feel like i am in control and we all know i am a control freak
• its freezing outside so if i have to be in the hospital why not when it is miserable out? i certainly do not want to be in the hospital in the summer
• hopefully we can still go to florida in march

Yes being diagnosed with a benign tumor is not fun and of course a little scary but honestly it is a damn relief, I have spent my life feeling like something was wrong with me and yeah I was diagnosed with depression, anxiety, and anorexia but people do not take mental disorders as seriously as they should (see my undergraduate research paper on mental health stigma) and the fact that I know have a lemon sized tumor in my head that may likely be impacting my attention, executive functioning, anxiety, etc is a relief...that is a sad statement but completely true and yet another reason why we really need biomarkers.

so things i need to do before surgery

• bloodwork and physical with my primary
• call obgyn to share my medical information (e.g. HELLP syndrome) to Yale and let them know that I have a tumor that could likely be  having an effect on my pituitary gland (eg hormones which may be related to my low hormone levels, infertility, lack of any interest in sex, etc)
• get into contact with cognitive remediation psych research
• ???neuroscience department??
• call psychiatrist to update on everything
• tell work that I will be out for a while
• contact Monsignor Weiss
• love and enjoy my family

I was listening to a very interesting podcast today about a woman who also had a golf ball sized tumor on her pituitary gland and was so struck by how much I related to her experience that I actually stopped in my tracks mid run to kind of calm myself...I still can't come to really understanding the fact that I have a tumor in my brain and rather than being a bystander, looking on in or reading about some poor soul with a brain tumor,  I have a brain tumor... Thankfully my tumor is benign but it still feels surreal and just listening to how I have had the same symptoms ... including the total lack of libido (can you see me blushing through my typing?) is just bizarre...

aspie connections

The following is my initial google document in which I wrote up my personal aspie connections and while it is quite scattered, i thought it would be interesting to share
https://docs.google.com/document/d/1-AIydohNH3dZvbAAxiW_ePg4oHzJNCuY4cW1ycO7fD0/edit?usp=sharing

First day back at work

I finally went back to my job and did an annual evaluation today and it really reminded me how much I miss my clients. The little girl that I saw today is such a sweet, smart, and amazing little angel and it was a joy to see her and play with her today. I feel bad for my poor colleague as I am definitely a bit "slow" mentally due to the keppra and time off but she was really wonderful as usual.  Today was the first day I met with the client at home (I usually see her at daycare) and therefore was my first session with her mom...I completely forgot that her mom is a nurse at the ER and it turns out that I had in fact met her when I went to the ER following my seizure and head injury, it could have been really awkward but we just laughed about it and had a really nice visit.

The EEG results came back and other than the expected slowing of the normal background rhythm in the area of the cyst the results were normal so my doctor let me know that it is up to me whether I want to continue with the Keppra, try a new medicine, or stop anti-seizure meds at the moment with the understanding that I will have to go back on them if I have another seizure. I am not sure what I want to do, I am not a fan of how I feel on these medications but am also scared of having another seizure...I will talk it over with my husband tonight and see what he thinks because we really are in this together and I want to do what is best for him, Maeve, and all of the wonderful people I am blessed to have in my life. 


I also spent a bunch of time researching and learning about the temporal lobes in general and cysts and it is quite fascinating...could this epidermoid tumor be related to my struggles with executive functioning, anxiety, and depression? Research studies on arachnoid cysts in the temporal lobes and psychiatric issues are really interesting and I am surprised by how much I can personally relate to case studies...the poor task initiation, poor organization and massive issues with scheduling, thinking "on my feet".... I know that epidermoid tumors are different but the location is the same...I also contacted a doctor from Yale with experience with epidermoid tumors last night and was delighted when I saw his reply this morning at 6 am in which he cc'ed his secretary to arrange an appointment :) I also contacted a neurosurgeon in Hartford who has experience with epidermoid tumors and am hoping to meet with these additional neurosurgeons soon to figure out what the next steps are. 

Have I even mentioned my husband? Well, he is amazing. Not only did he sign up for marrying me with the full knowledge of my depression, anxiety, social awkwardness, and eating issues but he has now saved my life and is being an incredibly strong, supportive, and loving husband whom I probably scared to death when he discovered me seizing in the bathroom, banging my head on the wall. He and my parents (and my in laws who almost left the airport on their way to Florida) are now driving me around like a child to various doctors appointments and procedures and then my daughter around to her dance classes, daycare, and tumbling.I just could not be more blessed, especially considering my beautiful angel girl who has been singing the cutest little song "I love you forever" and giving lots of hugs. I am amazed at how well she is coping and hope that we can keep her life as normal as possible no matter what happens.

 In terms of the epidermoid tumor I did get some fun pictures from my MRI:

...it looks like i have a lime in my right temporal lobe...could that have anything to do with my anxiety, poor executive functioning skills, etc?

Now some positives:

My doctor also responded to my concerns about the anti-seizure medication and said that if my EEG results from today come back fine then I can stop the keppra.

Alycia Halladay from the Autism Science Foundation is amazing and so responsive! I plan to finish up writing my podcast about the differences between modern day ABA and DTT tomorrow and am really hoping she has some work to keep me busy during this uncertain time. 

Happy 35th birthday..... what more can i ask for? Two months prior to my birthday I realized that I may very well be on the Autism Spectrum which may be related to my executive functioning issues, my sensory issues, my difficulty with social situations, and my compulsive need to control my food and exercise even though I am underweight and unhealthy because the control helps numb my constant anxiety and stress. Oh wait! That's not enough, let's throw in a seizure, a brain cyst, take away my license, and leave me to figure out how to organize and schedule a job that is not adequately intellectually stimulating and requires me to drive from house to house! I CANNOT do this...but how else am I going to pay for my er visit in ambulance, neurologist, eeg, mri, neurosurgeon,  and daycare, dance lessons, and tumbling classes for my daughter. I feel paralyzed and do not know what to do.


Oh, the MRI results are as follows:

HISTORY: Intracranial mass. History of seizures. TECHNIQUE: Multiplanar pre and postcontrast enhanced MR imaging of the brain was performed using standard pulse sequences at 1.5 T, including FLAIR, EPI diffusion-weighted imaging, and gradient echo imaging. 5 cc of Gadavist gadolinium based contrast was injected intravenously. COMPARISON: CT from Danbury Hospital dated 11/24/2019. FINDINGS: EXTRA AXIAL SPACES INCLUDING BASAL CISTERNS: There is a mass in the right middle cranial fossa which appears to be predominantly extra-axial and is circumscribed and lobulated and displays predominantly decreased T1 signal and heterogeneous predominantly increased T2 signal and marked restricted diffusion. Following contrast administration there is a thin rim of faint marginal enhancement. It measures 4.8 x 4.8 x 5.8 cm. The lesion insinuates along the surface of the temporal lobe and anterior sylvian fissure and contacts the right middle cerebral artery and its distal branches. contrast administration there is some marginal enhancement. Mass effect sulcal effacement and right to left subfalcine midline shift; and uncal herniation results in effacement of the right perimesencephalic cistern. VENTRICULAR SYSTEM: There is effacement of the temporal horn of the right lateral ventricle related to mass effect from the right middle cranial fossa mass lesion. CEREBRAL PARENCHYMA: There is a lesion in the right middle cranial fossa that insinuates along the surface of the right temporal lobe with displacement that results in sulcal effacement and uncal herniation is right to left subfalcine midline shift (3 mm).. While the lesion is probably mainly extra-axial there could be an intra-axial component as cortex of the polar region of the temporal lobe appears to partially envelop the mass lesion. There is no intra-axial edema or abnormal enhancement. CEREBELLUM: The cerebellum is normal. BRAINSTEM: There is mild mass effect upon the right cerebral peduncle due to uncal herniation as a consequence of the mass lesion in the right middle cranial fossa. The remainder of the brain stem is normal. CALVARIUM: Normal VASCULAR SYSTEM: Appropriate arterial and dural sinus flow voids. The right middle cranial fossa mass lesion contacts the cavernous sinus and supraclinoid internal carotid artery as well as right MCA and its branches. VISUALIZED PARANASAL SINUSES: There is mucosal thickening within the maxillary sinus and ethmoid air cells. Air-fluid levels are present within both maxillary antra. VISUALIZED ORBITS: The orbital structures, including optic nerve complexes, are normal. VISUALIZED UPPER CERVICAL SPINE: Normal SELLA AND SKULL BASE: The sellar region and skull base are normal.

Impression 1. Right middle cranial fossa mass with imaging features compatible with an epidermoid tumor. This is predominantly extra-axial but insinuates along the surface of the right temporal lobe with some findings raising concern for intra-axial extension. Associated mass effect with sulcal effacement, 3 mm of midline shift, and uncal herniation.

MRI was today and WOW those things are noisy, I cannot begin to imagine how a child could possibly go through that! The pictures confirmed the presence of a epidermoid cyst in my right temporal lobe and I guess the next step is to meet with the neurosurgeon and see what he thinks. In the meantime, my doctor wants to up my Keppra or try a new drug but I do not really understand why that is necessary following one seizure and explained that in an e-mail stating:

Thank you for getting back to me. I am doing a little better with the Keppra 1x daily although I still feel a little out of it and cognitively slowed down the next morning. Unfortunately. I have a history of insomnia and depression and really cannot handle the side effects and ups and downs of trying out drugs especially that I am a mom who has gone through this when trying to cope with insomnia and depression. Moreover, since this was my first seizure and there were clear precursors (e.g. dizziness) is it necessary to be on medication after just one seizure?
Thank you,
Molly

I honestly just cannot deal with being a zombie because it just is not me and I cannot be the mom I know I can be.

I can't do this

AM
I can't do this. I am a miserable, cold, zombie. I can't be a mom, I love my daughter, I want to be involved and happy and enjoy her wonderful smile. I just feel paralyzed, this time of year is incredibly difficult for me and now I am stuck in this old dusty house freezing. The only thing that calms my mind is walking and running outside but now it is so damn cold that my face hurts and I just cannot psyche myself up to go outside. i feel guilty about not cleaning up the house, about feeling like a zombie and not being there for my wonderful little girl...

Upon making my Autism - Eating Disorder connection (e.g. restricting intake and going nuts with exercise out of a need for control and sameness) and myself  I have learned a lot about myself in the past few months. Specifically,  I struggle with

• 
  
• unexpected changes
• anxiety
•  loud noises
• social situations, especially small talk
• executive functioning
• cognitive flexibility
• planning
• organizing
• multi tasking

On a positive note, I can hyperfocus on topics of interest and find peace in routines.

PM
Feeling a little better now, and well there is one thing that I can do...document. Since I love researching and it is something that has always calmed me I have been doing quite a bit of research on this whole arachnoid cyst thing and well it apparently is not exactly common...especially in females and on the right temporal side. I have also read a bunch of links to anxiety, adhd, and depression....which considering my diagnoses of anxiety, adhd, and depression makes this an interesting area of interest. So if there is nothing else that I can do, at least I can document my story. With that said the following is my CT Brain Scan report:

FINDINGS: There is a 4.2 x 3.8 x 5.7 cm CSF attenuation anterior right temporal lesion.

This does not appear to represent a typical arachnoid cyst as there appears to be small

amounts of brain tissue along the periphery of the lesion and there are small marginal

calcifications. Remaining brain is unremarkable. No intracanal hemorrhage, acute

cortical infarction. Ventricles nondilated. Basal cisterns preserved. No extra axial

collection. Osseous structures intact.

I am getting an EEG and MRI this week and will report back my results.

11/20

I feel...paralyzed… an overwhelming need to disappear.  The simple question is why? Unfortunately,
there is no simple answer...just a million little reasons that feel like a million stones placed on my
chest...weighing me down...making it hard to breath. 

• Lack of hours at work today and the session that I did have felt pointless (a solo visit without a program book therefore no way to review progress and know what skills the child is working on, substitute teacher so I could not really review how things are going since my last visit including what has been helpful or not helpful)

• Asked to take on a new case in Newtown and not knowing if I should

Reasons to take

• Hours
• Could schedule on days that I may be going to Waterbury for ESDM cases...that is if I receive the advanced training that I have been waiting a year on that may be happening in December/January

Reasons not to take

• No other cases in Newtown area
• Great therapist but very needy and tends to expect me to change all that is broken with our system

I am generally unhappy with job due to lack of structure, lack of training for therapists, lack of objective measures, and no real goals...I think we are supposed to be training caregivers in implementing NDBI strategies BUT therapists do not know how to implement NDBI strategies, many caregivers view our time as babysitting time and do not participate, cancelations and no shows, lack of a team approach (slps, pts, etc all working on different and sometimes conflicting skills such as slp teaching child to sign more when I am trying to have them vocalize, lack of individualization in goals and recruiting parent input in goal development,  small talk which I can handle when it is with people I have gotten to know but there are constantly new therapists and new parents, constant scheduling and attempting to arrange co visits with therapists, children, and caregivers who have their own changing schedules (wish I knew where I was going each day and that there was consistency), no shows that i do get paid $15 for including my time for traveling, rescheduling, trying to pop in somewhere else, etc)....generally feel like there is no point to my job but do not know what else to do. 

• Feel like I am trying to do 3+ jobs at once and just cannot do it because I feel the need to give each one 100% and they are all part time projects and I have an inability to multitask and shifting between tasks is extremely difficult. I wish I could focus 100% on something that I really care about...research ... maybe I should focus on podcast as that may help perhaps lead to more research with ASF….but I also need to make $....
• • Work
  • Parent training study 
  • Podcast 
  • ??Burke study and research??
• My birthday is coming
• Holidays
• Maeve almost drowning and me having to jump in pool to grab her and now need to call to cancel swim lessons and maybe membership but i do not want her to be afraid of water and therefore feel like i need to take her swimming even though I hate swimming in the winter when it is cold (purple numb fingers, dry skin, unbearable chill) which is why I signed her up for lessons but then they had a new teacher every week who wear all nice kids but had no idea how to teach children, and then the drowning episode
• My weight is down and I am completely addicted to my fitness tracker
• Cognitive remediation therapy?
• Need to clean house
• Need to paint trim
Unfortunately, this is not the first time I have experienced this…

11/29

Happy Happy 35

Let’s add some fun new updates and anxiety stones 

• Overwhelming anxiety continued to build since last entry leading up to intense de ja vu, dizziness on Sunday that ended with me in the ER due to a seizure and concussion. I last remember spraying down the shower after showering and then apparently I had a seizure, fell down, and whacked my head on the bathtub. Luckily my husband found me and called 911, called my parents, and kept me safe while the ambulance came.At the ER, a CT scan showed an arachnoid tumor that “does not appear typical”.... Visit to neurologist → Keppra and 3 months no driving...3 months no driving in a job that requires me to be driving as much as I am actually interacting with clients...how do I schedule that? Oh and add in appointments for the doctor, eeg, mri, neurosurgeon, and neurologist. 
• How do i do this? My mom, Brandon, and coworkers are amazing and willing to drive me around and I am very thankful for that...unfortunately it goes directly against my intense need for control, to be on my own and by myself, to work on my own schedule and routine...and basically adding in an inordinate amount of stress. I just don’t have any idea what to do…
• Oh and most importantly, How do I entertain and socialize my daughter? She needs to go around to play groups and play dates and now I cannot even do that...she does not have siblings...she needs to be with peers…
• A few positives..
• Sent in my podcast and received wonderful feedback
• Fitness tracker is gone

11/31

I walked into my second visit with a client today two weeks after my initial visit. and upon seeing me
he walked around to the back of the class room, took a bin of cars off of the shelf, dug through the bin
to get the green garbage truck and a police car, walked over to me, and put the police car in the
garbage truck just as we had done over and over again during our initial visit. I am completely
astounded that not only did he remember me but remembered the exact play routine we engaged in!
This reminded of another little girl who upon seeing me enter her daycare for my second visit ever
retrieved a particular yellow dump truck from a shelf, walked up to me, and grabbed for my clip board to
roll the truck down just as we had done during our first visit a month ago!

Spectacular memory and association!

ASD mind is truly amazing and makes me think that the real goal of early intervention should be to help
these child communicate with the world all the wonderful things that are going on in their minds and
share their gifts.

11/3

Need ASD screening for vulnerable/ at risk girls (eg those exhibiting signs of anxiety, depression,

disordered eating, self harm). To do this we need 

• a valid instrument for screening ASD in females
• Identify gatekeepers (school counselors/psych, pediatricians, psych)
• Educate gatekeepers on ASD in females
• Provide gatekeepers with screener 

 Where to get funding? Autism research foundation? Spectrum women?
University programs researching ASD in females ?

11/1

I have learned a whole lot about myself over the past month or so as I learn more about ASD in

verbal women and definitely feel like I am not alone in this world and that there are in fact many people who do think like I do and have the same struggles…. For example,executive functioning and set shifting are two things that I have incredible difficulty with and I think that is why I have such difficulty completing everyday tasks from cleaning the refrigerator to writing a powerpoint training for therapists (executive function) and switching between tasks and especially going from one client to another (set shifting).

The self-awareness that I have is fantastic but now I need to take action and figure out how to work

with my strengths and weaknesses. I really identify with how Temple Grandin talks about the importance of protocols and checklists. I feel like if i had a checklist for everything then there is nothing that I cannot do because when given a task I get so overwhelmed by the details and steps that I never seem to make adequate progress.

10/27/2019

While my in-laws were visiting yesterday I came to the realization that I really just do not have the
energy to mask anymore, I am who I am and well...that is all. I am sorry that I am not bubbly and
outgoing but that is just not who I am...I also really cannot do my job anymore...all of this scheduling with 13 different families
(and multiple therapists each with their own schedule)  including several who currently have
their phones disabled and are therefore unreachable is just too stressful...I just do not know what
to do...I love working with the kids but hate the scheduling, driving around, lack of structure,
working around everyone’s schedule which leads to me not being able to have a schedule at all and never
knowing where I am going or when..am I in the wrong job? What can I do?

10/28

Female Client’s last session, happy go lucky =, we are playing, reading, smiling → sing happy birthday
-->shut down → I completely identify and empathize because I DESPISE the Happy Birthday Song as
i hate the attention and personally request that it not be sung. i even request for my birthday as a whole
to  be ignored because the attention makes me extremely uncomfortable.
i wonder if this could be common among individuals on the Spectrum with higher social motivation
tendencies??

Camouflaging research (Hull, Mandy, Lai, and colleagues) is fascinating...
especially personal accounts by late diagnosed women because I completely relate and honestly
thought I was broken because social interactions (even basic conversations) exhaust me. 

October 23, 2019

Upon realizing that I may be on the Autism Spectrum I copy and pasted a list from Tania Marshall of
common Aspie Women traits, highlighted what I identified with, and as I made certain connections in
my head between my past and present self and  traits on the list I would add comments.
But the list is becoming quite messy and in order to show the progression of my understanding I am
going to write the connections down separately as I make them. The format will be very similar to
every day Aspie In which the author wrote an entry each day for a year upon realizing she had
Aspergers/ My writings will most likely be daily and probably after I run because I tend to make the
most connections while running and listening to podcasts and research. Anyhow, to begin with here are
today's connections that I made when I was driving to work this morning (running late in traffic, trying to
navigate where a new client lives, worrying about communicating with new client through a translator,
and trying to schedule upcoming sessions) and then walking my dog while listening to the Podcast
Them Aspergers.

• I hate the job that I love
• I LOVE working with children on the Spectrum, they are a joy to interact with and I find
• helping them acquire new skills to be incredibly rewarding. HOWEVER, there are many

• aspects to my position of being a BCBA in Birth to Three that I do not enjoy and cause
• me great anxiety which in turn leads me to controlling the things in life i can control (e.g.
• exercise and food).
• Specifically, scheduling co-visits with 5 other therapists for 12 different clients (each therapist
• and client with their own unique schedule) is a massive head ache as i struggle with
• organizing and scheduling as well as constantly contacting others to arrange visits not to
• mention I find it hard enough to schedule something a simple as a hair appointment and

therefore simply go to walk ins. 

• 
  

While it is frustrating when people have to cancel last minute, I completely understand that 
illness and family emergencies do happen. However, canceling or not showing up for your child’s
therapy session because you forgot, slept in, decided to take a last minute vacation --even though
you have not paid your therapy bills--, Netflix unexpectedly released a new season of your favorite show

early, is incredibly frustrating (especially since we do not get paid). Clearly, my job works directly against my internal need for consistency and routines

• not knowing where I am going to be each day makes me very anxious.
• Small talk. Because I work with so many people, each session requires a certain amount of small talk that can be exhausting and really just unpleasant. I avoid going to the office at all costs (especially after 9 am) so that I do not risk seeing people and having to make small talk.
• Lack of a manualized procedure. I feel like most of my time is spent without a purpose. I do like the structure that comes from following an organized program such as that detailed in Project Impact sessions as well as the Parent Training study I am involved with which requires parents to complete a module each week and then the purpose of our visit is to discuss what they learned, clarify anything that they did not quite understand, discuss what worked what did not work and how to improve.

• I find small talk incredibly aversive largely because I am constantly reminding myself to
  make eye contact, rehearsing what I should say next, and monitor conversational turn taking and apparently other people on the Spectrum find this to be true as well. I am not the only  one! 
• Because of the extra effort i need to put into socializing, I do not find it rewarding and in fact  avoid it. BUT again I am not alone in this, as many individuals on the Spectrum feel the same way. Unfortunately, I have always felt incredibly guilty about backing out of social gatherings in the past and the way that I “coped” was to binge/purge, self-harm, or overexercise. I never quite understood why I engaged in such self-destructive behavior but i now understand that I felt overwhelmed by guilt and feeling that there MUST BE something wrong with me to back out of social events that were supposed to be pleasurable and that in  order to suppress these feelings I engaged in incredibly harmful behaviors. 
• Doesn’t everyone have routines?

• I like my routines and schedules and find them to be very calming and I know this is
• characteristic of someone on the Spectrum but doesn’t everyone have routines? I guess not
• everyone gets as frustrated and frazzled as I do...because when sudden changes happen
• I do get extremely anxious and agitated.