Wednesday, April 22, 2009

Dear Universe, Are you listening? It's Me.

So, what do you do when everything goes WRONG.

And is anything ever really WRONG, anyways? I mean, maybe I should start listening to the people who say this all happens for a reason.

I don't really buy that God has some plan and is making my father and my family suffer to show us how strong we are or anything like that.

But I do have to say that when EVERYTHING goes wrong around you, and then things just get worse, and worse...don't you have to stop and say, SOMETHING is wrong here.

Do I think I could have stopped this from happening to my father? Do I think he was supposed to suffer? Do I think I was supposed to suffer? HELL NO.

I'm not actually sure what I think. I'm more brainstorming here.

And maybe my controlling nature is flaring up right now because things feel so out of control.

But 5 years ago this month, everything was going wrong. Not big things like now. But in my younger and more immature perspective, everything was wrong. I fell twice in two months and broke two bones. We tried to buy a house and it fell through. My job was making me miserable. I could not seem to catch a break.

I decided to quit my job and pursue my passion as a career. I felt scared and out of control. My boss was begging me not to quit (although she was a major reason I wanted to leave). I said my goodbyes and was to face my first week as a self-employed person.

I woke up that Saturday morning, felt weakness: like I had worked out really, really hard (but I hadn't). I felt shaky trying to hold a pen. By the end of the day, I was walking like someone with muscular deterioration disease. Two days later, I fell while just standing still, my muscles collapsed. I could only crawl on my elbows to the phone to call 911. They broke my door down and took me to the hospital, where I was finally diagnosed with Guillaume Barre Syndrome. At the time, I had a 5 year old and a 1 year old. I did not have the strength to hold them, or even hug them. I couldn't hold my own toothbrush.

Within 10 days, I had decided that this was not acceptable. I went from having zero muscle control and having doctors and nurses standing around me waiting for my respiratory system to fail, to walking with the help of a walker. I was expected to be in the hospital for more than 6 months, breathing on a ventilator. Instead, I walked out on my own after less than 2 weeks.

I decided to stop being scared of my life. I decided just to live it. My career took off faster than I could have imagined. I bought a house I love in a great neighborhood. I have never worried for money, I have never had symptoms from my illness again.

It's like the universe, with all the missteps, was trying to tell me something.

So here I sit again. Career that I used to love, I resent. Marriage over and on the eve of divorce. Money running out quickly. I'm alone. I am experiencing near constant vertigo and wait for my own neurological workup and results from bloodwork. Father, the closest person to me in my life besides my kids, in the hospital fighting for his life and constantly suffering.

What is it?? UNIVERSE, CLUE ME THE HELL IN. Seriously. I BELIEVE IN YOU. Is that what I have to say???? Do I need to tap my heels together three times? I'm ready for the answer!!!

Friday, April 17, 2009

The Dream

I have nowhere to share this really but I need to write it down and get it out.

Last night I dreamt that we were at the hospital picking up my Dad after all of this crap, like months and months from now, and he was up and walking around and totally normal. I was hugging him and so grateful to have him back in my life.

The doctors wanted to call one last meeting, so we all sat around a big table together in sort of a conference room.

Thinking we were about to hear "Congratulations, he's finally outta here!", we sat happily together, so relieved this ordeal was finally over.

I looked at his doctors face and noticed he was not smiling. I looked around the table and noticed that all of the medical team's faces were grave.

After that, all I heard was "two weeks to live."

I stood up, over them, and said "What?? He's done! He's ok! He's coming home!!!!!!!!"

"I'm sorry."

I stood there with a scream stuck in my throat, looked at my Dad, who looked so sad for me (because that's how he is). Looked down and my skin was turning white. I felt it welling up inside me, the scream of anger, but it was so slow, I couldn't seem to make it surface; just stuck in my gut, trapped.

Finally I looked the doctor in the face and screamed "I HATE YOU! I HATE THIS HOSPITAL!" with the most fire I could muster.

I collapsed, and sobbed and sobbed.

Woke myself up, and I was sitting straight up in bed, still screaming and still sobbing.

After I had this dream, I found out that my Dad has more spinal fluid building up in his brain, even with the shunt. I didn't think I had devastation still in me, but I do. And now the dream makes sense. I don't think he's going to die, but the feeling of everything is ok then BAM worst news you could think of...this pattern that has been happening for almost 2 months now. Hope, then relief, then devastation, then anger. I see now how I keep thinking if I take the hope or relief out of the equation, it might stop this pattern. But it doesn't. Nothing does.

I have a doctor's appointment this Tuesday morning. Because get this. I am having vertigo and dizzy spells. I'm 99.9% sure it's stress or anemia or something. But WTF, how could I not go and get it checked out?! I thought to myself, what are the chances of two people in the family having a brain tumor? But then, this family seems to beat the odds, in the not good way, most of the time. As my close friend said, we should go to Vegas.

It's probably even psychosomatic, but the only likely way to shut that off now is to hear from a doctor that I am nuts and a hypochondriac. And then watch-- boom, no more dizzy spells.

Will keep updated.

Tuesday, April 14, 2009

The Shakeup

I'm still here. I just haven't really known what to say.

Dad had his 3rd brain surgery last Friday to put a shunt in his head to permanently drain excess spinal fluid away from the brain. They can't explain why he has excess spinal fluid, it's rare...but he does seem a little better. He's sedated and acting a little strange so it's hard to say yet. And honestly, I've been staying away for a couple of days at a time. It's just gotten to a level of total and complete I CAN'T TAKE IT ANYMORE and it's easier to pretend it's not happening. Not to mention, I HAVE to. I have three kids and a business who are suffering without me.

It's strange to have all these feelings of being completely overwhelmed with my life, all over again. I can think back to when my husband first got his own place, and see the patterns happening all over again. First, total immersion in the situation. Next, the sadness of being completely alone through my troubles. Then, the completely overwhelming feeling of I-can't-do-this-one-more-minute-and-just-want-to-sleep-my-life-away. That's pretty much where I am now, although the more I let myself stay away from the hospital, the better I am feeling. I started getting up with my kids in the mornings again, started picking up things a little more instead of letting everything pile to the ceiling. Just at that stage where it feels easier just to let it all go than to try and face any of it.

I'm bitter and bitchy a lot of the time, and feel socially awkward. Where I used to be the person who had no trouble making friends and conversation, I find myself fumbly and distant. I try to change it and it's just too strong. I don't know why this is really. I hope it doesn't last. It's like I've seen this ugly side of humanity that not everyone sees, and it's changed me. I know exactly who my real friends are (a little humbling and surprising), I don't trust doctors, hospitals, nurses anymore, I feel constantly paranoid, I get angry at bizarre things like seeing old men driving cars (why can HE drive and my 53 year old father can't?). All the aftermath of this huge shakeup, and it's hard to say which of it will heal and which will scar.

And when I say shakeup, I mean all of it. The death of my baby 11 years ago. The auto-immune disease. The divorce and swift re-marriages of my parents. The event that led to the demise of my marriage. Followed by the second chance followed by the second event that led to the demise of my marriage. Followed by the separation, the brain tumor announcement, the surgery, and all the complications following. I think I used to think that all of us had some sort of quota for traumatic events. Like, this HAS to be the worst of it. But it wasn't, and now that safety net is gone in my mind...could something now happen to my children? To me? To my brother or my mom? No one is immune.

Saturday, April 4, 2009

You won't believe it, but here it is.

I don't even know where to start.

Rehab was not working. Dad was getting worse.

Thursday, my sister-in-law was visiting him, and mentioned that the people taking care of him were not really following what they were supposed to be doing.

I mentioned this to his wife along with some other observations of my own. She called his doctor.
Finally, he was moved to a "close observation" floor of the rehab center.

Upon his arrival, the nurse there decided he needed to go to the ER right away. His breathing had become labored and "gargled".

Driving to the hospital, I thought this was just a quick backdoor way into getting him readmitted to the hospital.

When I walked into the ER, I walked into an episode of ER. There were 6 people standing around him, there was yelling, there were alarms, they were sticking things down his throat; my brother and Dad's wife were with him and looked scared to death.

He was gasping for air. His breathing--"labored" they called disturbing, I hope to someday be able to forget it.

They had him on oxygen. His chest was working too hard. His heartrate was too high. His oxygen levels not high enough.

His eyes were closed but he looked scared and kept reaching for his wife to cradle him.

They kept sticking suction down into his throat and pulling out ounces and ounces of something brown: HIS LUNCH.

He had aspirated his pureed beef and gravy.

We spent an intense three hours with him, watching him gasp for air. We kept pleading with the ER doctor, the techs, and the nurses to please do something. They kept telling us his numbers were fine and they didn't want to intubate him needlessly.

Finally after this three hours of torture, a doctor walks in, her face pale and sober... she walks to my Dad, turns and looks at us, and says "You know his numbers aren't good, right? He is experiencing respiratory failure."

We told her all the things everyone had been saying about not wanting to intubate. We didn't want him to be intubated because of all the damage the intubation had caused his throat, his swallowing, everything...

She said, at this point, that didn't matter...he was heading toward respiratory arrest.

She made calls. In come all the people again. One walks in with a crash cart. I took one last glance at my struggling father and just decided I couldn't be there one more second. I felt like I was standing in the middle of a war.

I walked to the waiting room, sat and shook and cried for a while, then decided I was ready to find out what had happened.

My family was around the corner, and let me know that he had been sedated and intubated, again.

I walked in the room, took one look at him, out and looking like a vegetable, and decided once again I couldn't take anymore images of him like this. I bolted.

We stood in the hallway, my family and I, and mused at how things just keep coming out of nowhere, things we could have never imagined or made up. We try to prepare ourselves for the worst, and then something unimaginable unfolds. You can't write this shit.

The next morning, I was still struggling with the images in my head of the scene in my Dad's hospital room. The phone rang (I have a phobia of ringing phones now, seriously) and it was my sister-in-law...

Dad had a ct scan that morning. There was spinal fluid around his brain. He was going into emergency surgery with his neurosurgeon to relieve the buildup.

And so again, I made my way to the hospital, sat in the same waiting room I sat in almost a month ago, this time with no hope or optimism, just feeling as though there was no other option but for things to go very, very wrong. Shock. Numbness. Fear. Complete and total despair.

The doctor came out afterwards and spoke to us...the operation had gone well, he expected everything to go just fine, but this is a major setback. Like starting completely over, only worse. This time, we don't know how much damage has been done from the spinal fluid buildup, from the intubation. Also, he has aspiration pneumonia.

Just because that wasn't dramatic enough, after the surgery, the doctor decided to verbally attack us as a group. He felt like we were questioning him too much, said that if we had some "issue" with him that we had better find us another doctor, that we had better "watch out", and basically threatened to remove himself if we didn't treat him with respect. This was all provoked only by Dad's wife asking if she needed to be in on a meeting between doctors (she was joking, and laughed when she said it). Obviously we are all under stress, but this took us completely off guard. We all felt it best to just apologize and kiss his ass, since he is our only hope for my Dad... but talk about knocking us on our asses. We stood around and just stared at each other for a minute..."Did that just happen?"

I feel like I'm drowning. I don't know what to do anymore. My friends don't know what to do anymore. My closest friend told me she was actually too scared to even say anything to me at this point. What's sad is that I understand it. I wouldn't know what to do either. Their lives go on, mine has stopped...and I just have to step back and wave goodbye. So I'm left completely isolated, alone in charge of three innocent children who cannot understand what is wrong with their mommy or their grandfather. I try to get through the day but I just want to sleep so I can stop seeing the horror play over and over in my head.

I call my Dad's work voicemail hundreds of times a day to hear his voice. I read his emails from just weeks ago. I look at his picture, I remind myself of the times that make me love him so much: riding on his shoulders as a child, having lunch every week with him, him coming to every soccer, baseball, and basketball game of my children, inviting us to dinner constantly so he could get a "grandkid fix", his special bond with each of my kids, his love of football and music, watching him play his guitar on stage, smiling and singing JUST 4 WEEKS AGO.

And then the image sneaks back in of him with a drain coming out of his head, a tube down his throat, flat on his back and seemingly's my worst nightmare, materializing EVERY SINGLE DAY. Over and over and over again in cruel and unusual ways.

People keep commenting about how "strong" I am, how God doesn't give you more you can handle, blah blah blah. Let me tell you, I go on because I have to...because the kids continue to need me, because the sun comes up every morning whether I want it to or not, because I can't die so I have no other choice but to breathe.

Said best by a close friend who just lost her husband to cancer:

"I know by saying, “I know the place you mind dwells at the moment,” means nothing. You want to slap people that try and give you a hug, roll your eyes at those who say “hey keep in touch love you” and most of all this is an odd time where you want to be left alone, but not really left alone. It’s an awkward time in life with no rhyme or reason as to why you are here and if there even is a reason to the madness that seems to be life (or a sick version of hell) at the moment.

There is a phrase that I have kept with me all these past two years – this, life as I know it, is just my greener side of hell at the moment. Hell God throws us way more sometimes that we can handle and , I just like I am sure you have, – have come to hate that phrase and just want to pummel the next person that tells you that or that this is some part of a greater plan. What great plan, puts a father in the hospital?

Hugs seem fake and tright. You’ll even wonder why those that were there in the begining no longer come around – or when they do it’s for five minutes when you need them for more like two hours.

You don’t trust your self with your emotions, one second you see a glimmer of hope – only to have it squashed 5 minutes, 5 hours or 5 days later. There is no easy fix. And I pray often to have God, or whatever higher power is up there, to give me some of your pain. I’ve had almost 2 years of dealing with raging emotions, because even when I was positive and the go-getter around people, I was that person that went home cried it all out so I could be strong when I needed to be. It SUCKED, it added a hardened layer to me that is the bitchier side. You sink down to the 13th depth of hell and sometimes just wish that you could go to bed and walk up with it all being a dream. No tumors, no hospitals, no fake people.

Often times you dread to think of what could be worse than this – because with everything you know what’s worse and you know you just don’t want to go there. You search the radio looking for something that pumps you up, only to find that everything pisses you off. You sometimes randomly go through your phone wanting to talk to someone, only to see that every name in your phone is just not the person you want to talk to – because that person is sitting in a hospital bed next to you."