Back-To-Back Seizures (Kinda)

Well toots. I had another seizure on Saturday. That's a fast turnaround since I just had a seizure a few weeks ago. Never a good sign.

I was playing with my nephew, who had just finished his peewee football game. His older brother was suited up on the field.

We were swinging on tree branches, between practicing touchdown dances, when all of a sudden I felt the seizure coming on. I looked at my eight year old nephew, who didn't even know what a seizure was, and by the tone of my voice, he knew something was very wrong. I told him, with my bug eyes, to get Dan. I slowly followed, pulling pills out of my purse. There was so much excitement, the fans cheering for the players on the field, kids throwing balls, girls taking SnapChats with their friends, laughter, yells. There was nowhere quiet to go.

I put a pill in my mouth and chewed it, hoping it would seep under my tongue and enter my blood system fast. Dan came to me, pulling off my coat since I had lost control of my torso. I always overheat when there's seizure activity, so it's important for me to get cool as soon as possible. He gently rocked me down to the ground, supporting my neck. He then ran to get water, and ice, and a few people started to ask if we needed the trainer, or a medical professional. I was able to tell them it was nothing to worry about, that I'm epileptic, and will be fine in a minute. A big fear of mine is being put in an ambulance, and being placed in the hospital, but we were able to avoid that issue. I don't know what I would have done without Dan.

As the shaking and twitching waned, the emotional release of the seizure loosened tears that streamed down the side of my face. I was so relieved that it didn't turn into a grand mal. I was actually thrilled that I had managed the episode in a calm way. That it was relatively under the radar, and aside from the throbbing headache, I was able to take a group picture right before we snuck out. I was out of it - I don't even remember taking the photo, but I'll never pass on the opportunity to commemorate outings with my sweet little nephews whom I absolutely adore.

I hope that I didn't scare them. I ended up with a droopy face for several hours. It was fine if I was toothy smiling, but the half-assed smile was the dead giveaway.

I have to say that this seizure episode will not stop me from running around getting crazy with these cuties. However, I might need to spend a few minutes prepping them for a future episode so that they know what's happening, and that it isn't anything to fear. If I explain it the right way, with a nice coloring of humor, they might even think it's kinda cool. Usually, life is all about how you handle it.

Guest Blog Series - Lone Wolf

Several days ago, a girlfriend shared a brilliant idea with me. She said, "What about guest blog posts?" It came as a solution to share other people's stories since I get sick of writing about me. You'd normally never hear about any of these folks because unlike me, there are people who fear repercussions from being honest about their diagnosis. And sadly, from the stories that I've heard, their often not wrong. Once we know something about a person, we can't un-know it. And that becomes an issue regarding employment; our stories change how we are viewed. 

You guys know me, I have no filter (or a very weak one), and I just speak. But there are times when I've regretted writing this blog. It's rare, but it happens, and it's because I know that the interwebs are eternal. If I apply for a job, there is no hiding my story. I can't disguise what I've gone through, the deficits I deal with. For certain lines of work, it's unappealing for employers to hire cancer patients, especially depending on the specific diagnosis, and prognosis. It's just a fact. Anyway, I reached out to one of my tumor friends, one who is living in solitude with her diagnosis. 

My goal in sharing these stories is several fold. I want patients to have an outlet, to express themselves anonymously. I want to give a voice to different stories so that people learn the dynamics of disease. I wish life was easier, that we could all share our truths openly, but if we can't, at least we can have a format to do that here. I have no idea if there will be others who would be interested in sharing. I really hope there will be more patients, caregivers, family members, friends, etc. that would be interested in sharing their views, their experiences. I wanted to provide this slot for guest writers, because I get to hear these amazing stories, and I learn so much. It makes me a better person, it helps me understand the myriad of lives on this earth. The more I learn about other people, the more compassion I have, the more I can love deeply and be patient, and kind. And it's interesting to hear what other people go through, to hear their perspectives. I hope this provides a benefit to those who choose to write a guest post, and a benefit for those who read them. 

The goal is to start by publishing a guest post once a month. Please let me know if you would be interested in contributing. Let me pull from two posts ago, "your story is enough". Let's learn from each other. I hope you enjoy.

"I love trees, especially when seasons change.
I love their stability, strength, and endurance." - Lone Wolf

“My Story”

So I am sitting here thinking …. “This is the first time I am going public about my diagnosis and yet I am using a pen name…ugh.” There is a reason I assure you.. Ok … So where do I begin? Honestly, I am not sure where to start. I guess I will start on the day my life changed forever, but first let me provide a little history. I am a 30 something mother of young children. I am a licensed mental health therapist, and I have been married to my high school sweetheart since, well forever.

On April 2nd, 2013 I went to the ER because I was having a pretty bad headache. A few days prior I hit my head very hard on our glass shower door. Of course this was because my puppy was up to no good and I went to quickly check on her and BOOM … there goes my head. Anyway, due to the headaches, my husband suggested I go the the ER in case I had a concussion. The ER visit went from “hey your young but let's do a CT anyway to now we need to do a MRI.” Honestly, I thought that I had bleeding in my brain and I was terrified. After my MRI, the doctor returned, and the nurse took our kids out of the room. I began to cry before he spoke because I knew it was going to be news that would forever change my life.

I will never forget that the doctor sat very close to me and said, “You either have MS or a brain tumor.” My husband and I sobbed for several minutes, but then I quickly remembered that my children are down the hall coloring and I need to be strong for them. I had to be!!!

Through time I visited several neurosurgeons, neurologists and neuro oncologists. Hey, I was on an interviewing tour. Remember we pay them!! After speaking with several specialists,  I was preliminary diagnosed with a low grade glioma. You may be wondering if I had any symptoms. The answer is no, not one. The neurologist did put me on Keppra (anti-seizure) just in case. However, three days after I decided to stop taking it I had a small focal seizure in my right arm. So my neuro oncologist decided to take away my driving privileges. Of course I would NOT let that happen!!! I have three very active kids. Therefore, on July 1st I chose to have an awake craniotomy. Ok … I have to be honest here; my two c-sections were more uncomfortable and nerve wracking compared to this craniotomy. All in all, the craniotomy went well and I had over 90% of the tumor resected. 

So pathology .. What's the news? Diffuse Astrocytoma, Grade II. Now this is when my dear old friend Google became my worst nightmare. Search after search said I was going to die and worst of all the time frame in which I can die varied. So here I am “the mental health therapist” that has dealt with everyone else’s crisis now in the middle of her own. Yeah .. I know all the coping skills, to accept what you cannot change, to move forward not backward, to reach out for help, to assess signs of depression and anxiety, etc. However, during this time I was literally a “hot mess.” I was on roller coaster of emotions that never stopped. I couldn't sleep, I couldn't look at my beautiful children or husband, I couldn't look at the sorrow on my parents faces. It was such a dark place in my life and I refuse to go back there. It took so much time to get from there to where I am today. I would love to share this in posts to come. However, I say that the one thing that ignited change was when a woman told me that I live in a house of depression. This shook me to my core. You see as a therapist I have worked with many children and see the ripple effects the parents actions can have on them. At that point, I became stronger, a fighter and a thriver. I have met amazing people along the way, including Jess. Jess and I have a lot of similarities, including diagnosis, but we are similar in one very important aspect … Yes we still live in fear of the unknown but we live, love and laugh as much as we can because guess what … no one makes it out of this world alive! So maybe, and that's a big maybe, my time is shortened but having to face my mortality everyday gave me the beauty of living in the moment. Ok .. Ok .. I can go on about that forever so instead I will address why I have a pen name.

When I was first diagnosed, many people I encountered felt sorry for me. They pitied me. Every face I saw had sympathy written all over it. One thing about me is that I have always been a go-getter. You know, nothing can stop me!!! However, I began to notice that their pity weakened my strength. It just dragged me down. Let me tell you, as a therapist, I  am highly trained on empathy versus sympathy. It was interesting to experience the two first hand. This actually helped me to become a better therapist. So after this experience I limited who I told. I never EVER tell my clients because their sessions are about them … NOT me!! Also, my job doesn't have a clue. I want to be seen as a qualified therapist and not “the woman with a brain tumor.” Oh and get this,  I use medical marijuana. Yeah … Not such a fun conversation to have with parents at one of my kids next game! So, for now, I have a pen name to protect my job, my license, and my children, but as my sister in law always says “I cannot wait for your ‘I’m coming out party!!!!’” Me too!! This baggage is too heavy for me to carry, BUT if I face sympathy, pity or judgement this time around I will be well prepared to point to where the door is!!! As someone I love always says to me and now I say to you, “Light and love.”

- Lone Wolf

Urgent Jess Update

The email I sent to friends and family after the results of my scan:

Friends & Family,

Just wanted to send a quick note to let you know that I've had some extremely unexpected news. After an insanely intense debilitating headache that occurred last Friday while snowshoeing with Danny (and a couple of re-occurring headaches on Saturday and Sunday), I scheduled an appointment to meet with my doctor yesterday morning (Monday).

I told her that I had such a bad headache that I couldn't walk or see for about 90 seconds, and that the left side of my head, and lower back of my head, felt like they had a lot of pressure, and continued to have a pretty bad aching sensation.

I pressured her to sneak me in for an MRI scan immediately, but there were some hoops regarding my insurance so we planned a CT for today.

This morning I went in for my CT scan, at which time they said that I would instead be receiving an MRI (at which point I thought, "ooooh, UPGRADE!!"). Once in the room for the MRI they told me that I would not only be having an MRI but also an injection to see my brain even better (at which point I thought, "Cool! Double upgrade!!!").

After the procedure the radiologist looked at me funny and asked when my followup exam was (and I told her Friday), she told me that they would have my results shortly. I only got halfway home on my drive before I had a call from my doctor who told me that she had been on the horn with the neurosurgeon Dr Higgens and that I have a massive brain tumor and an AVM. I asked her if I was going to die, and her response, "We hope not."

She wanted me to turn around and head back to the hospital because they were holding a position at the CT dept for an Angiogram as soon as I could get in. Of course, I then called Danny sobbing and told him I couldn't talk but that I had a brain tumor. Then, I had my parents come get me from my car - I couldn't drive because I was sobbing and shaking so badly.

I've since done the angiogram and I just took my first pill to take care of the brain swelling. 

I have an apt with the neurosurgeon tomorrow where he will go over my diagnosis and my options. It all depends on the AVM and the Tumor (I'm capitalizing because I fell like it deserves that kind of punctuation). The two issues are unrelated, but make it difficult for surgery. I have no idea what type of tumor it is. We have no idea what I'm actually dealing with.

Anyway, at this point all I know is that I have a large Tumor in my lateral parietal region and an AVM.

I will be in and out of the hospital in the following days, and it looks like the first brain surgery is scheduled for Thursday morning at 8:00 am.

In the meantime, I love you all - all of my friends and family, and if you pray or send positive energy, please do what you do and think of me because I'll feel all of your positive thoughts. I'm not sure how things will continue from here, and I probably won't be on the phone except for doctors or things of that nature - I've already been on the phone today with three different doctors, two radiologists, and multiple nurses regarding this issue. They are awesome, awesome people, and they're really moving this right along.

Sorry if this email is ridiculously long - but you all know that I'm absurdly long winded.

Please don't be offended if I don't get to your call/text/email - it's definitely not personal. All of my love to everyone - I have been so insanely fortunate in my life - and I can't wait to conquer this - and for the record, I am cashing in regarding this email...any grammatical error of any sort or any particular aspect of my writing that doesn't sound eloquent and mind blowingly witty, is because I have a brain tumor.

ALL MY LOVE
XOXOXO
Jess

No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.

No European Post Yet

I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.

(image added later)

So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)

So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.

I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.

It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!

Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.