Helpful Resources and Information I Wish I Had When First Diagnosed

I intend to update this post constantly, as I am always coming across new and helpful resources.  I believe they can be utilized regardless of whether you are newly diagnosed, or a long-time member of the cancer club. 

This is in no way an exhaustive list, but these are some valuable websites and organizations I personally connected to.  I also don’t claim to be any type of expert!  You have to do what is right for you.  So, I have included some of my personal advice based on my experiences and those I’ve met along the way.  

One invaluable piece of advice I have heard over and over again, as well as advice I’ve given:  DO NOT GOOGLE!  Don’t get me wrong – it’s hard not to in our digital age.   Try your best to avoid the overwhelming urge to search out your symptoms, diagnosis, etc. on chats or less-than-established websites.  I have heard horror stories of patients googling one symptom, or one treatment option, and becoming convinced they will die in the matter of months.  I’ve also heard countless patients tell me that they entered an online chat on some random site only to feel helpless and more frightened about their diagnosis and/or prognosis.

On the flip side of that though, I have met a number of people, who did their own research on their disease and found cutting-edge treatment options.  That led to numerous conversations with their doctors and in some cases, changing doctors/hospitals after weighing all the options.  Again, do what is right for you.    

Overall though, I’d recommend focusing on sites such as:  American Cancer Society (cancer.org); National Cancer Institute (cancer.gov); Association of Cancer Online Resources (acor.org); and, the Mayo Clinic (MayoClinic.com).  They are the experts – not us.

For brain cancer-related sites, I rely on the National Brain Tumor Society (braintumor.org).  Disclaimer: I am heavily involved in NBTS, so I am admittedly biased.  Some other brain tumor organizations people have found helpful are:  American Brain Tumor Association (abta.org/) and Voices Against Brain Cancer (voicesagainstbraincancer.org/). 

I also found my hospital’s website, as well as their social workers, key resources.  Again, I am extremely biased towards my hospital (I wouldn’t go anywhere else), so I won’t include their specific link.  Although, despite how incredible my doctors and hospital are, I found that I had to be the one to reach out for these resources.  So, be proactive.  Seek out social workers.  Ask them for information and helpful sites, organizations, publications…  Be your own advocate.  It’s incredibly challenging, especially early on in your diagnosis.  Don’t you have enough to worry about?  I strongly believe it benefits in the end though.

I have mixed feelings about support groups.  They work for some people.  They don’t work for others.  My advice: Ask questions.  Find out as many details as you can about the group(s).  Weigh the options.  Are you open, or ready, to seek support from other patients/survivors?  For me, I was frightened to hear other people’s stories.  What if it made me feel even worse about this whole roller coaster, and more specifically, scare the hell out of me?  Would there be people there at the end of their battle, truly facing the worst, i.e. dying?  In the end though, the support group I joined helped me feel less crazy (Like, wow, other people have these crazy thoughts too?) and I connected with some really incredible people.  Specifically, I joined a group through Cancer Care (cancercare.org), and found them to be a good fit for me personally. 

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), Cancer Care provides a fantastic program, Healing With Words.  They describe it as “an online therapeutic writing group… The group will be a space to respond to writing prompts, share work, and participate in discussion surrounding the writing process itself.”  I absolutely loved participating in this group and many of the articles and pieces I included under this category were provided by the social worker moderator.

Additionally, one particular organization I cannot say enough amazing things about is First Descents (firstdescents.org/).  I really don’t even know how to put into words what First Descents gave to me.  So, I’ll let their site best summarize what they do, in the technical sense.

“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same….Each program is limited to 15 participants, ensuring individualized care, medical attention and an intimate experience with fellow survivors. First Descents programs are available to young adults with cancer regardless of their financial means. All meals, accommodations and program activities are provided free of charge, including travel scholarships, when needed.”

“At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family. These are the moments that define First Descents and the paradigms our programs seek.”      

Through First Descents, I spent one week with 9 other cancer survivors kayaking through the whitewater rapids of Oregon’s Rouge River.  These 9 people are now my FD family, and I don’t say that lightly.  I do not know where I would be without them, and without my FD experience.  The program challenged me physically, emotionally and mentally.  I absolutely came out of that week a better and stronger person. 

As a side note, I almost did not make my trip.  I was scheduled for my program in mid-August.  I learned of my recurrence in June, and underwent my 2nd brain surgery on June 30th.  I then began IV Avastin infusions and one week of intense, high-dose radiation.  Through every single step of the process, I feared I would have to cancel my trip.  However, through my oncologist’s tireless fight, all of my treatment was scheduled around my FD program, and I was thankfully approved to participate.  My FD experience was truly life-changing, and I will forever love my doctors for giving me that gift. 

On another side note, I will probably dedicate a number of posts to FD and what I gained from my experience. 

Basically, if you have the opportunity, apply for an FD program, like now!!!

                  

“The Things I Wish I Were Told When I Was Diagnosed With Cancer”

This is a piece, which I continue to come back to since cancer entered my life.  If I only knew these things when I was initially diagnosed…

The Things I Wish I Were Told When I Was Diagnosed With Cancer

By: Jeff Tomczek

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

 

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

“Uh, I’ve had the worst week of my life.”

“Uh, I’ve had the worst week of my life.”

So, not everyone has survived brain surgery, twice, and battled brain cancer, twice.  I fully recognize that.  Living with cancer and the trauma of it all has brought me an invaluable perspective on life.  I know that people cannot truly understand my experience without having personally faced cancer, or any life-threatening illness really.  Even among cancer survivors, each and every one of us has our own story and struggle.

With all that being said, I was not prepared for the vast array of reactions to my diagnosis.  I was told that people would surprise me in the most unspeakable, incredible ways, and others would surprise me in the worst ways.  Truer words have never been spoken.

After learning I had been diagnosed with cancer, the majority of people said, “I just don’t know what to say.”  Honestly, that’s all you need to say.  There are really no “right” words.  There may be a lot of wrong ones (I’ll get to that), but I found that as long as the love and concern was there, that was all that mattered.

The day before my surgery, I received a framed photo of a group of my friends, taken while we were in the Caribbean just months before, ironically celebrating my 34th birthday.  As my friend handed me the frame, all she said was, “We love you.” It meant everything.

Following my surgery, one of first the gestures that struck me was the onslaught of food people brought over and sent to our apartment.  It was amazing!  I never imagined that such a simple thing would mean so much.  By the way, I highly recommend chocolate.  Chocolate helps everything.  And while I couldn’t personally enjoy a glass of wine while recovering from surgery, my God, would I have loved a few bottles sent my way!  Wine also helps everything.

Coming from a strong, Irish Catholic family, and having married into one, I received an incredible amount of prayer cards. I would not consider myself a particularly religious person in the conventional sense, but every prayer card and mass touched me deeply. I do truly believe all of the prayers helped in my recovery.  Even if you don’t believe in God, or a higher power, I feel there is a powerful energy created by all of the good vibes/thoughts/rain dances people send your way.

I do not have any immediate family in this country, aside from my parents. Recognizing that, my husband’s family stepped in and scheduled among themselves what days they would each care for me in the weeks after my surgery. Not having to ask them for help  meant the world.

Soon after my diagnosis, one of my closest friends dedicated a race to me, posting that I was an inspiration to her. Throughout our friendship, I always saw her as the strong one. Now, I was serving as her inspiration and strength.

These are only a handful of the incredible ways people responded to my diagnosis.  Yet, there were many hurtful and painful surprises along the way too.

A week or two into my radiation treatment, and just about six weeks after surgery, a particular person asked how I was. I did not want to have a long conversation on just how badly I was feeling, so I breezed over exactly how I was doing. When I asked how she was doing, she started out by saying, “Uh, I’ve had the worst week of my life.” She proceeded to tell me the most mundane, ridiculous story about a series of meaningless events that happened throughout her week work. It was one of the most insensitive things anyone has said to me throughout this entire experience.***

During one of my particularly hard weeks, I mentioned to that same person that I was experiencing some very bad anxiety. Her exact words were, “What do you have anxiety for?” It seemed unbelievable to me that she actually couldn’t conceptualize how this experience could cause me anxiety. I reacted in a very snarky way, and not even recognizing my obvious sarcasm, she then proceeded to tell me what I needed to do to help my anxiety. It was not advice I wanted, nor needed.***

***And before you think, “Who is this person?, I will just say it is a person, who should have known better, but who I dearly love and care for.***

People just want to seem like everything is normal, so they tend to act like everything is normal.  The problem is – being diagnosed with cancer in your early 30s is NOT normal.  None of us want to be treated differently simply because of cancer.  Yet, that term “perspective” constantly crosses my mind.  Suggestion #1: Do not talk about your stray grey hair, as my hair is literally falling out in clumps due to radiation to my brain.  Suggestion #2:  Do not tell me that as soon as I recover from brain surgery, I can start thinking about having babies.  Suggestion #3:  Do not compare breaking your leg to my brain surgery and brain cancer – I’m sorry, but they are not the same.

“Don’t worry.” I have been told this more times than I care to think about. I do know that it comes from a good place, and that when people tell me this, they just want me to be okay.  They don’t mean to place added stress on me, or make me feel like I have to be strong for them.  I do just wish more people would instead say, “I understand. It’s scary.  This absolutely sucks.” They could acknowledge how serious my diagnosis truly is and use multiple expletives, like I tend to do. When people tell me, “Don’t worry” I feel that it discounts or minimizes the legitimate fear I have about this possibly ending my life.

Another comment I’ve struggled with is, “You look so good!” I admittedly do not look like the “typical” cancer patient we see all over television and film.  You know, the bald head, sunken eyes, grey skin and skeletal frame.  I look just like everyone else, minus the bald spot and enormous scar on the top of my head.  That may be what scares people though.  I feel that when someone looks at me knowing I have/had cancer, while seeming so healthy and normal, it makes them fear that cancer can happen to anyone.  It could even happen to them.  In some ways, I think people would be more comfortable facing my diagnosis if I fit into that characteristic cancer patient aesthetic/chic.

Despite some of the more hurtful reactions, I have come to be extremely patient and empathetic towards other people’s struggles.  The title of Robin Roberts book Everybody’s Got Something sums up that notion well.  Everyone has their own pain, heartache, longing, fear.  Again, we each have our own story and struggle.

No one is prepared for cancer.  There is no handbook to direct us on how to react, whether you’re the person facing the diagnosis or you’re the loved one of that person.

One of the most poignant moments in discussing my diagnosis was when I expressed my worries about a recurrence with my oncologist. She looked me in the eye and said, “We will deal with that if it happens.  Then, we will make a plan for what our next steps will be. For now, just live your life.”

So, every single day I come back to those words: “Just live your life.”  No matter what the day will bring, or what the day has brought, this is my mantra.  Cancer has brought some terrible things into my life.  Yet, it has given me this new, beautiful, profound perspective on life, and that is something I will cherish forever.

“So, does that mean it’s cancer?”

“So, does that mean it’s cancer?”

“So, does that mean, it’s cancer?”  That was the question I found myself asking, during my first post-operative appointment with my neurosurgeon.  The only way to fully determine  whether a tumor is “benign” or cancerous is to undergo hours of complex surgery, involving your skull being sawed open and your brain being cut into to remove the evil intruder that has invaded your body.  (I use the word “benign” in quotes because personally, having to undergo brain surgery, whatever the ultimate diagnosis may be, doesn’t seem “benign” to me.)

As if it hadn’t been enough to have survived brain surgery, now I was faced with days of agonizing over the official diagnosis.  Did I actually have cancer?

I eventually learned the answer to that nagging question was indeed, “Yes.”

My particular tumor was an anaplastic ependymoma, an extremely rare and aggressive form of brain cancer, which was likely to recur.  They weren’t lying – it would soon recur.  That is a story for another day though.

It’s indescribable to truly explain the feeling when you’re first told you have cancer.  From what I can describe, I felt… numb. My heart felt like it had actually stopped beating. I am an incredibly sensitive person and typically can cry at the drop of a hat.  P.S. There hasn’t been a single Disney movie that didn’t bring me to tears.  Yet, when I heard the word “cancer”, I cried like I had never cried before. The tears came so slowly. It felt like time had paused and then reset in slow motion. I couldn’t breathe fully. I couldn’t look at my husband, who sat there next to me. Frankly, I couldn’t feel anything.  I just sat there with my head down, staring at the floor.

Quickly though, I held my head up, stopped crying and said, “Okay.  Well, what do we do now?”

I still don’t know exactly where that intense, sudden feeling of strength came from.  I didn’t feel scared or hopeless.  I felt determined that I was going to do everything in my power to fight this and come out on top.

As the weeks went by and we established a treatment plan, I felt hopeful. I would remain positive, recover from surgery, and just get through this. I wanted to get strong again and return to an active, healthy life. I was convinced that I would be able to just look back on those months after surgery and treatment, and see them as a very tough bump in the long road of life.

Surprisingly, I never became angry or questioned, “Why me?” Of course, I questioned what had caused this, and I was frustrated to hear that I would possibly never know how or why this disease had so harshly attacked my body.  However, I decided very early on that I would not let negativity control my life. Frankly, negativity had subsumed so much of my time and energy in the past, mostly due to trivial, petty things. While I had always lived a happy, fulfilled life, I struggled with finding the positive in things and tended to focus on the negative. After hearing the word “cancer” I vowed that would no longer be the case.

As time progressed, treatment ended and I was left alone with my own thoughts, things became very dark. My anxiety became overwhelming. You know the saying, “Life isn’t easy”?  Well, no one ever says just how “easy” dying can be.

I sat at home in the weeks after treatment so frightened that the tumor would come back. I feared that the next time, the tumor would be inoperable and that it would slowly eat away at my mind and body.  I also thought that I would have to undergo multiple surgeries, but ultimately the tumor would still keep coming back. What would happen to my husband and my family, who loved me so dearly? How much would they suffer watching me painfully and slowly die? I would do my best to push these thoughts out of my head and get back to focusing on all the positives. However, it was a constant struggle and frankly, the anxiety consumed me.

During that time, I convinced myself that any little sign of discomfort or something out of the ordinary meant the tumor was coming back. In fact, weeks before my first round of follow-up scans, I contacted my oncologist multiple times convinced that a minor head cold was a sign that the cancer had returned. Logically, it didn’t make sense. Yet, by that time, logic had not just gone out the window – it had been violently shoved out the window, seemingly never to return. I agonized that any little sensation in my arms or legs was the start of a new seizure. Given the anti-seizure medications and my prognosis at that time, the likelihood of a seizure would have been slim-to-none. Yet, wasn’t this whole entire brain cancer experience already so out of the realm of possibilities?

Scanxiety is real and it is horrible.  I often say that I wish my doctors could just schedule the scans without me knowing the date and time, and simply call an hour or so before to tell me to come in.  It would save so much stress, worry, panic, fear, etc. etc.  Scanxiety has gotten better over time, (Thank you, Ativan!) but that period leading up to my first post-treatment scans was unbearable.

Once I learned that the scans were clear, my oncologist sat down with me, extremely concerned for my mental and emotional well-being. Now that the pre-scan anxiety began to subside, I had to focus on getting back to the person my oncologist had first met, who told her, “I’m going to beat this.” I got professional help to handle the anxiety, I returned to work part-time, and I began to again focus on the good things in my life. Quickly, the overwhelming anxiety disappeared. The strong, positive person I had been when I first learned of my diagnosis began to return.

It’s been two years since I first asked, “So, does that mean, it’s cancer?”  Unfortunately, it would not be the last time I would have to ask that question.  The whole experience still feels surreal. I still worry about what the future holds for me and whether my cancer will return, yet again. None of us know what the future holds though.

After my diagnosis, I will never be the same again, mentally, physically, or emotionally. I’ve come to accept that though. Life may not be easy, and it may not be fair, but it’s the only life I’ve got and I plan to make the best of it.

“So, you’re going to need a little bit of brain surgery.”

IMG_1402Two and a half years ago, I took this photo while sitting on Maya Beach in the Phi Phi Islands on my honeymoon in Thailand.  At that point, I was living a pretty damn perfect life.  I was married to the love of my life.  I had amazing family and friends.  I had a challenging, professional career working in New York City.  I led an active, healthy lifestyle.  Yet, I knew how to throw down a few cocktails and let loose.  I am Irish.  I know how to have a good time…

Basically, I was the “girl who had it all.”

Then, on Sunday, April 6, 2014, everything changed in the matter of a heartbeat.

While sitting in my nail salon that Sunday, reading what was likely some trashy gossip magazine and being completely mindless, I began to feel a strange sensation in my left leg.  I had been experiencing this sensation for a few months, but I had naively chalked it up to some kind of ambitious yoga stretch that I obviously hadn’t yet mastered.  First mistake – do not ignore your body when it is clearly telling you something is wrong!

In those prior months, I had simply expected the sensation to just go away.  I brushed it all off.  I mean, I didn’t have time to worry about something that seemed so minor.  I couldn’t work a doctor’s appointment into my demanding schedule!  Who has the time?  However, I soon began to have frequent episodes where my entire left foot and leg would go completely numb.  I would have to stop walking, or running, or doing whatever it was I was doing, until the feeling subsided.  I worked in New York City.  I was constantly in a rush.  This sensation was just getting in the way.  It was an annoyance that I finally admitted needed to be checked-out further, just so I wouldn’t have to stop on the subway steps with hordes of people behind me bothered that I was holding them up.  And yes, that is what finally brought me to see my doctor… not a true concern for my health, but my frustration in this inconvenience to my daily routine.

So, I eventually sucked it up.  On Thursday, April 3rd, I saw my primary care physician.  While relaying my symptoms, my doctor seemed clearly concerned.  Due to a family history of multiple sclerosis, she ordered an MRI of my brain, which would likely be scheduled for the following week.  I sat there in tears.  How could some numbness in my leg be a possible sign of MS?  I had seen what MS had done to my family members.  I suddenly began to imagine my future and it scared the hell out of me.  Little did I know what would come just days later.

Anyway, there I was that Sunday, having a “me day” at the nail salon, attempting to forget about that doctor’s appointment and the nagging feeling that Yes, something was definitely wrong.  Ironically, as I sat with my nail girl, I began telling her about that appointment and what my doctor feared.  At that moment, the numbness in my foot came on and began traveling up my leg, into my left side and down my left hand.  I asked her to give me just a minute, convinced the episode would pass.  Suddenly, I began to have trouble breathing.  In sheer panic, I told her to call 911.  For the next 30 seconds, I lost all control of my extremities.  I was violently shaking, unable to speak.  Then, I lost consciousness.

I later learned that I had suffered a grand mal seizure.  When I eventually returned to my nail salon, the girls explained that the seizure had been so violent, my contact lens had actually popped out of my eye.  By some miracle, one of the salon employees had experience with seizures, and was able to care for me until the EMTs arrived.

The next thing I remember was being wheeled into the ER.  My immediate thought was, “I am dying.  This is what dying is like.”  I recall the EMTs asking me my name.  I didn’t know it.  They asked me what was happening, how I was feeling.  All I could muster was, “I don’t know.  I don’t know.”  I have no idea how I got into a hospital gown or into a hospital bed, but when I finally realized where I was, I screamed out, “Please call my husband.  Where is my husband?”  Thankfully, the nail salon had been able to contact my friend, who was then able to call my husband.  Life lesson – never underestimate the value of a great nail salon!

When my husband arrived in sheer panic, it was like something out of a movie.  He rushed into the hospital room, throwing back the curtain.  I had never seen him look so scared.  He is the strong, silent type.  This had clearly rocked him to his core.  I immediately became hysterical.  In between gushes of tears and attempts at catching my breath, all I could say was, “I don’t know what is happening!”

In a way, as strange as it may seem, I feel blessed for how the seizure happened.  I wasn’t driving.  I wasn’t alone.  I wasn’t, god forbid, on the subway where people likely would’ve just assumed I was some crackhead, who had a bad dose.  I was somewhere safe, where everyone knew me.  I also wasn’t the one, who had to make the devastating calls to my family and friends to tell them what had happened.  Where would I have found the words?  I also cannot overemphasize the glory of anti-anxiety medication!  The ER doctors were kind enough to administer those soon after I was fully coherent, so I was at least highly medicated when I learned what had actually happened.

A calm, soft-spoken neurologist eventually came into my hospital room, which was now filled with family and friends.  I recall him putting his head down, eyes to the ground, telling me, “Your scans show there is some kind of lesion on your brain.  Whatever it is, it will have to be removed, and it will have to be removed sooner rather than later.”  Frankly, I hadn’t even realized I had undergone any scan.  News to me!  I also couldn’t fathom that just days earlier I had believed I was in perfect health.  Now, I had something in my brain that had caused my entire body to entirely shut down, nearly killing me.  What was going on?

The next few days in the hospital continue to be a blur.  Again, meds are amazing.  I don’t know how I would have even begun to process everything without being highly medicated.  It is amazing what our minds do remember though.

One of the few, crystal clear memories I had was getting our family lawyer to draw up legal documents.  One such document was a Living Will to ensure that my husband and family would not have to make the dire decision to keep me alive under extenuating circumstances, like ya know, becoming a vegetable only being kept alive by machines.  As an attorney myself, it didn’t even occur to me what the significance of those documents meant to my family.  For me, it was just business.  For them, it was devastating having to think about such possibilities.  I even had my two dear friends, who are also attorneys, come to sign and witness the documents in the hospital.

Another significant, overwhelming moment during those next few days was trying to arrange brain surgery – definitely not something I had ever in my wildest dreams thought I would have to do.  You know that saying, “It’s not brain surgery.”  Well, it was, and now I was faced with the biggest decision of my life.  Who was I going to trust with my life, to cut open my skull and remove something in my brain?

Another frightening lesson I have learned through all of this is that the doctors you choose really do mean life or death.  While the ER doctors were extremely competent, I would not have trusted that hospital to perform brain surgery.

Through various connections, I was beyond fortunate enough to get an appointment with one of the top neurosurgeons in the country.  He is my hero for so many reasons, but one of my favorite things about him is how he broached the topic of surgery.  I distinctly remember him walking into the room during our first consult.  He was not wearing a lab coat, but in “business casual” as you’d say.  I got the sense immediately that he was not going to be one of those pretentious, “holier than thou” physicians, although given his credentials, he would have all the right to be.  He introduced himself casually and sat down on the chair next to the exam table.  With his legs crossed, sitting back, he looked at me and said, “So, you’re going to need a little bit of brain surgery.”  All I could do was laugh.  At one of the worst times in my life, there I was… laughing.

And so, in just a few short days, my life was turned upside down, inside out.  My life would certainly never be the same, but thankfully I’ve got a lot more life to live and a lot more to write about.