A wrong turn on the same dark road.

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This is not going to be a 'why me', or 'poor me' post. It's really not my style, but, I am in need to "talking" my way through this. This post may be more for my reference than for anyone else, and is sure to be long... but I guess it's a story of 'you just never know.'


Brief recap of me. 2 febrile seizures, A-ok for the next 20 years before the seizures came back in full force. Scarring found on the right temporal lobe, resected part of the hippocampus in Sept 2001. Life goes on until seizures returned in May 2012, another resection to 'finish the job' in April 2013. Just recently celebrated my 500th day seizure-free. My driver's license was also reinstated 2 weeks ago. :woot::banana:

Awesome, right?!!

I've been living with my dad since my seizures came back. (Long story there, but won't get into it). My dad is a total neat freak, and definitely a work-aholic. This past weekend, he commissioned me into helping him cut down several trees in the neighboring empty lot, for which he was going to be paid by the property owner. He worked for several hours Saturday afternoon before calling it a day and agreed to resume on Sunday. I heard the chainsaw going next door before I wanted to be awake, but, knew I should be out there helping. I wouldn't be able to sleep over the sound anyway... :roll:

We worked, and we worked hard. 4 trees cut down, cut into logs, branches bundled, etc. I got a call from my son letting me know that it was time to pick him up from his grandmothers, so off I went. But, not before acknowledging dad's extreme efforts for the day, and trying to convince him to leave everything for later, we'd do more later, or another day. He nodded and agreed, but knew he was lying.

Once Terron was in the car, we decided to head out for an early dinner together, knowing I really didn't feel like cooking. With my newfound freedom of driving and mobility, we hit up a favorite restaurant that we haven't been to in a few years. By the time I got home, it was about 2 1/2 later.

*Plot thickens*

Terron and I walk towards the house, at which point we notice the front door banging. We start giggling "oh geez, what's he fixing now". We waited for a pause in the 'hammering', and knocked back. One, just to be silly, and two, I didn't want to hurt him by opening the door if he was back there fixing something, about to hammer in a nail on the door frame or something.

But our knock went unanswered, so we knocked again. No answer, and no one unlocking the door. I take my key back out of my purse, and unlock the door. Noticeable pressure from behind the door as I start to open it slowly. With enough of a gap, I see legs on the floor. My dad's. I keep opening the door, moving him out of the way, and hear him panting. My first instinct was a heart attack. He's dad (my grandfather) passed away from one. My dad had been working HARD all day outside. He's drooling, he's shaking. He's having a *$#*$^!@* seizure! The banging on the door was his body, banging against the door :crying: :eek: Kneeling on the ground beside him as he starts to come around again, I call 911. Terron was a champ, remaining calm as I tried to focus. I've had what feels like a million seizures, but have only seen one, other than this one.

The ambulance came quickly, which was soon followed up by a firetruck. They were concerned about a possible stroke, or head trauma, so was quickly placed on the board, neck brace on, and off he went to the hospital. I got in my car, and called my aunt, and promised to keep her updated. Dad looks to be asleep, as I run into the ER. He had another seizure in the ambulance en route to the hospital, so he was in la-la land after being pumped full of ativan. He was whisked away for a CT scan, and it was the beginning of a nightmare. Being optimistic, I thought they'd make sure his seizures were under control, let the meds wear off, and I'd be taking him home. We all know how little they actually do for us there when we've had a seizure, right?

No stroke. :tup:

At 3:40am, the doctor comes in and tells me that I should go home, no point in waiting, dad would be asleep for hours. Hesitantly, I left, but didn't sleep. Monday morning, I go back to the hospital to find that dad has been moved to a quieter room in the ER. We were asked to fill in a form for the MRI, and a neurologist came to speak with us for a bit, and we were then sent to a regular room. Finally some peace and quiet from the constant beeping monitors. Dad gets up to walk from the transport bed to his new bed, and I can see that his balance is unsteady. Probably side-effects to the dilantin he's now on. I hate that he's now experiencing that. I called the nurse practitioner from my epilepsy/neurosurgery program at the hospital where my surgeries were done. If he had epilepsy, there's no where else I'd rather be, and honestly, I needed to hear a kind voice on the other end of the phone who would understand my fears. I left her a voicemail as I just missed her.


Tuesday we were informed that he'd be going for his MRI in the early afternoon, and I questioned why an EEG was not being done as well, and he seemed surprised why that hadn't been requested yet. The neurologist was also a little perplexed. I guess this is where experience pays off. ugh. At least Tuesday looked like it would be a little more productive than Monday anyway. After being hooked up to the EEG, I sit staring at the screen while the tech begins the recordings. I'm no expert, but as the lines start to go a little crazy, and the tech turns to look quickly at my dad, I know something is up. I didn't tell him that, though. Next was the MRI. Seemed like enough excitement for that day, with some progress made, so I was happy.

Wednesday, I show up with my dad's favorite McDonald's Fruit & Oatmeal and coffee... it's become our new ritual. This work-aholic man, who seems to have had 9 lives, and is rarely sick is starting to get REALLY bored. We do laps on the hospital floor, and instead of using the private bathroom at the foot of his bed, we walk to the one at the other end of the wing by the elevators. 11:30ish, the dr makes his daily rounds, and enters the room without his usual haste. He took two steps closer than normal too, to situate himself on the bed, sitting next to dad's legs, as I sat in a chair facing them. The next 3 minutes happened in slow motion, and have been replayed in my head a million times since then. Staring at the floor, he says "The MRI scans show a brain tumor. In fact, two. I'm very sorry." He proceeds to tell us that he'll have a neurosurgeon come in to speak with us, but that the next step will be to refer us to another hospital downtown, where a biopsy would be done.

My worst nightmare, come true. The doctor leaves, and I silently walked to his bedside, laid my head on his chest, and together we cried. The rest of the day is a blur of emotions, phone calls and tears. Ironically, about 30 minutes after we got the news, my phone rang with a private number. It was the nurse practitioner returning my call from monday, with the best timing. Of course, I'm still sobbing at this point, but she was able to decipher enough. She told me to keep her in the loop, and would help in any way she could. I told her how much I trusted their department, the surgeon, and how badly I wanted him treated there.

The neurosurgeon came at around 4:45p. Of course he did... in the 20 minutes I had left to bring Terron home, and grab a 3 minute shower. I told my dad to hold him hostage till I got back, or worst case, have him call me while there. My phone rang as I was about 2km away from the hospital. I had a million questions anyway, so I tried to keep him talking long enough to be able to meet him up there. My plan worked. I stood over his shoulder as he was reviewing my dad's MRI images. I saw them. The two growths in my dad's head that are now forever changing our world.

We know that the one is deep in the middle of the brain, on the thalamus = inoperable. The other is on the right parietal lobe. A biopsy would be needed, which is not done at the hospital where my dad is currently, so he corroborated with the other doctor in saying that he'd be referred to a hospital downtown. The next part was music to my ears. He mentioned Toronto Western hospital (YAY!!! My hospital!), and a neurooncologist, and Dr. Valiante, a neurosurgeon. MY NEUROSURGEON!! They sent an email, along with the images to my neurosurgeon as I stood there.

I had prepared for a fight, in a country with socialized healthcare, where we can exactly pick and choose who treats us. This is a huge win. I followed up with an email to the nurse practitioner to fill her in... and since our last names are now different, I wanted to make the association.

Today, Thursday, was relatively quiet in comparison. There was hope he'd be getting out today, but, dilantin levels need to be taken first, and he wants to wait for the typical 4 days. He's going stir crazy, and it not the most patient patient, but he's doing fairly well facing the fact that there's something wrong. (He's also realizing that he's not in his 30s anymore, and that perhaps cutting down huge trees, even with the help of his daughter, is perhaps not so wise... and facing his mortality a little). It's been a tough week. We discussed the plan to move forward. When I learned that the neurosurgeon had marked it as non-urgent, I lost my cool a little. The doctor agreed that it was unreasonable, and reassured me that he'd change it.

So it looks like he may be able to come home tomorrow, and can resume some sense of a normal life until we find out when we go downtown, and for what. It's the beginning of a very long road.

Other than the obvious, the things I can't quite wrap my head around.. some of the ironies/divine interventions.

-I get my license back, dad loses his. :tdown:
-I rave about the awesomeness of my epilepsy/neurosurgery program all the time, now I'm pushing and advocating for him to get in there.
-My lesion/scar tissue was on the right, his tumors are on the right.
-I JUST bought a new car, and picked it up last Wednesday. I now have a way of driving him around, as he did for me.
-Good thing I came home when I did... and I'm eternally thankful that he wasn't on his bike, or driving at the time. After I left, he'd contemplated driving to the coffee shop for a quick snack and coffee, but rode his bike instead. Things went downhill after he returned.
-There are about 2 hours during which we don't know if he had other seizures. :(
-While I had a good friending advocating for me, and asking all the right questions, the tables are turned, and I'm now in that role. The doctor started talking about seizures and some of the side effects of dilantin. He stopped mid-sentence, and looked at me and said "Well, you already know..."
-I just HAPPENED to have scheduled a vacation week to use up some time. What a week off! ugh

Repeatedly, my dad says "Like daughter, like father." But it's not supposed to work that way. Now we wait.

If anyone has read this far, thank you! As the last few days have been a horrible blur, especially with my own memory issues, I want a place to go back and look at the details. I've been told for years that I should write a book. You never know. So begins a new chapter, and this may be handy to look back on.
Good night. :(
 
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You were there for him and that's all that matters! Good Luck and I will keep you and your dad in my prayers!
M
 
Mel,
So sorry to hear about your Dad. Thinking of you & all your family.
 
So sorry to hear about your dad, glad that you were there for him knowing all the questions to ask. Please let us all know as everything progresses.

Your dad and you are in my prayers {{{Hugs}}} Dolores
 
Mel,

I'm so sorry you're going thru this terrible time now. Happy to know you know all about seizures and Dilantin. Happy that you're still seizure-free!

Hang in there! Will be thinking of you.
 
Mel, I'm so sorry for you and your dad, and this unexpected trial. But what a blessing that he has you by his side to navigate and comfort him.

:hugs:
 
Hi, Mel
I'll be thinking of you and your dad, and wishing for the best. Look after your dad, but remember to take care of yourself, too. You have a great son who I know will be there for you every step of the way!
 
I'm sorry for this sad news that you and your family are facing. May you receive all of the strength and support that you need.
 
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