Thoughts

Forgive my ADD but I have some things on my mind.
Tomorrow my mom runs the NYC Marathon. I'm very excited for her and I'm excited to go cheer her on. It's been a few years since I went as a spectator - which is what inspired me to sign up and start training years ago.
I have pretty much zero interest in running these days. There is part of me though that wonders if tomorrow will spark something in me. Not sure. Retail therapy didn't work but maybe this will.
I've put a ton of time thinking about running and thinking about why I've lost interest. I think it comes down to the fact that I never got better at it. It was always a struggle. And although I know that 26.2 is quite an accomplishment, I'm tired of doing something I clearly suck at as well as something that never got ANY easier.
It's not just that though. It's that coupled with the fact that my life is relentless. All I do is do, do, do for everyone - leaving basically no time for myself. The time that I can manage to find for myself or squeeze in for myself, do I really want to spend it doing something that frustrates and makes me feel like shit? Yet at the same time, physically I like what running does for me.
I really don't know.
Friday nights I go out for me. I'm aware that there are some people who privately judge me on this. How can she go out when her husband is in the situation that he's in? Before I say Fuck You to you - let me enlighten you. Every single awake hour I spend taking care of my children, my husband, my elderly dog, my students. I am a caretaker, a cheerleader, an organizer, a shitty chef, a maid, a nurse, a teacher, a physical therapist, a psychotherapist, a dry cleaner, a patient advocate, a bill payer, an errand runner and a pharmacist. I dream of all this shit too. I wake up sometimes and for half a second or so I remember that things are not normal in my life. I cry. I pull my shit together and begin the daily process all over again. So Fuck You if you have the nerve to think for a second that I shouldn't take 2-3 hours a week to be MYSELF. I triple dog dare you to come here for a week. I could use a break so I welcome you to give it a try. I'd like to see if you're not checking yourself in to a mental institution by the end of just one week. Give me a call and we'll coordinate our calendars - oh yeah, that's another thing I am, a master coordinator.
ANYWAY - I'm curious if I'm inspired tomorrow while I cheer on my mom, my friend and about 50,000 or so other runners. I have guaranteed entry for next year - so I either need to catch the running bug or forfeit my last guaranteed entry.
I'm off to now make our cheering signs (because I'm also a project director) and go to the boardwalk for some skeeball (because I am also the one to maintain normalcy for my children every.damn.day).

Haircut

I need one. Badly. I also need a pedicure. And some yoga. And perhaps to actually put my sneakers on and go for a walk. And you're not supposed to start a sentence with "and" but I'm a rule breaker.

I need to take care of me. Every single awake moment has been spent taking care of others. Even the few times I've gone out I spent thinking and worrying of those I'm caring for.

We've all heard it a million times...take care of yourself so you're physically and mentally able to continue to take care of others. Easy to say when you're not in the thick of it.

It's true though. After all these months of not doing a damn thing for myself, it's catching up to me. I look like shit and I feel like shit.

So yesterday I decided to start thinking about me. I did some retail therapy. This won't provide any long term good feelings, I know, but I'm hoping that it at least starts up the routine of setting aside ME time.

But first I need to switch the laundry, empty the dishwasher, make breakfasts, put laundry away, vacuum, walk the dog, etc, etc, etc.

The straw that broke the camel's back

I wondered where this proverb came from. Here's a bit of info taken from Yahoo: 

"The camel was, of course a familiar, important animal in the Arab world. Its durability represented strength, but its existence as a living creature subjected it to the laws of physical reality. The camel therefore made a useful symbol of something strong but limited. That symbolism lay behind an Arab proverb about a camel that, despite its strength, was finally loaded to the point where it could not move."

Apparently I'm a camel. 

WTF will be the straw?

Lost in words

The Lost Dogs-Jim Gorant
Six Years-Harlan Coben
Night Moves-Randy Wayne White
The Kill Room-Jeffrey Deaver
It-Stephen King
The Mourning Hours-Paula Treick DeBoard
Reconstructing Amelia-Kimberly McCreight
The Never List-Koethi Zan
Always Watching-Chevy Stevens
The Perfect Marriage-Kimberla Lawson Roby
The Fault in Our Stars-John Green
A Serpentine Affair-Tina Seskis
Left Drowning-Jessica Park
Never Knowing-Chevy Stevens
One Step Too Far-Tina Seskis
Where She Went-Gayle Forman
If I Stay-Gayle Forman

These are the books that allowed me to get lost in their words this summer.

I have always been a reader. I read to be entertained, the learn, to connect, to calm my mind.

This summer has not been an easy one. My stress and anxiety have been running at a fairly high level since before school even let out. My mind at a constant state of processing, connecting dots, absorbing, retaining. Books, however, gave my mind a time to slow & take a step back from my real world even if just for five minutes at a time.

Summers prior, I would run. I would run to be alone, to clear my head, to handle my shit. This summer, running wasn't in the cards as I needed to be physically present. It's been 28 days of Chris being in the hospital. I would estimate that it was an equal amount of days in which he was not doing so good while at home. That's close to 60 days of red alert with no ebb & flow. A constant.

I started to fear leaving the house for an extended period of time. What if he needed me? But I couldn't just sit and stare at him (I actually tried that & it didn't go over so well). So I read.
And when bouts of insomnia would keep me up, I would read to settle the constant churning of my mental gears.
Waiting for hours in the emergency room, I read (when not having very intellectual debates with my sister in law).
Sitting in hospital room #1 waiting for endless streams of doctors to provide their insight-I read.
Trying not to allow the term "ICU" be what breaks me-I read.
Just allowing hospital room #3 be the place to allow his body to stabilize-I read to stabilize my mind.
Being present while he sleeps at the rehab hospital where he works so hard to get back to some sense of normal-I read.

It is my escape from sadness when it starts to creep in. It is my escape from fear. It is where I go when I want to throw a full blown temper tantrum (eh, to be honest here-the tantrum sometimes wins).

Color

Tattoos. Some people love them, some people hate them, some people like them but would never get one, some people want one but haven't taken that leap yet. I love them. I love looking at other people's permanent selection or artwork, I love that they can be a conversation starter, I love trying to figure out what a person's tattoo may mean to them, and I love that it's a way to capture a time period, experience, or serve as a daily reminder.

I love mine. All of them. Well, I may not LOVE the first one I got when I was 18 but I do appreciate that it represents a time that seems so long ago.

I get them for me. I don't get them for you or anyone else. If you happen to like what I get, appreciate them, be I inspired by them, that's great...but it's not why they're there for. Each tattoo symbolizes something for me...it would be like getting crafty with a photo album, buying a piece of jewelry, or having a special playlist. Mine just happen to be with me all the time.

The question has come up on numerous occasions, "What about when you're like 80 years old." Well,  if I live that old, I can guarantee that my tattoos will serve as my memory book. I will think about the times I got each tattoo and take time to reflect on those different moments in my life. The marathons I've run, the marathon I trained for but Super Storm Sandy had other plans, the guidance I needed, the mindset I like to try to maintain, the love of my life, the guidance my family needs, all of it.

I would Never offer up my opinion (without being asked) about someone's beliefs, interests, lifestyle, etc. Never. That's not to say that I don't have opinions - but who the hell am I to judge you? I accept that each of us is unique. I don't eat beef/pork - you do? That's fine. I'm not going to push my non meat consumption on you. You love snow? I hate it - you go ahead and enjoy it while I sit here enjoying a cup of tea and bitching about how cold it is. You're religious? Go ahead - I am not. And that is just perfectly fine.

I am fine with explaining the different tattoos I have and what they represent. I'm not one to get pissed off by people asking what they mean. As long as that's what you're really asking for.

Anger

If you Really know me, you know that regardless of what happens to be going on in my life at any given moment, I am an angry person. I'm also a silly person, a practical person, a dedicated person, a lazy person, a motivated person, etc. I'm a pretty healthy balance of both ends of the spectrum. Yet, I always come back to the low simmering anger.

Some say that anger isn't healthy. I think that's a load of shit. Anger is what motivates me. I have the ability to harness my anger and use it to help me get through things and get things done. I don't need a DSM-IV code assigned to me for this. Anger is a gift and I like that it's my gift.

These last few weeks have truly sucked. Sadness, fear, more fear, uncertainty, confusion....to name a few. But it didn't break me. It won't break me. There are some people who would've balled up and cried from the all of it. Other people who may just assume the role of almost a bystander. And then there are those of us who get angry and keep our shit together & get things done.

Yes, I am sad. Sad that my love has to fight so hard, sad that my kids are not getting our full attention this summer (relax, they are being showered with attention & love & ice cream), sad for myself. But where will wallowing in sadness get me?

What's my point here? Well, figure out who you are. Every single component and embrace every single one. Then figure out how to use them to make shit happen-whatever that may be.

Too many months

Too many months of treatment. Cocktails of chemo, Avastin and Decadron (nasty-ass steroid). There is no way that after close to 2 years straight of one cocktail or another the body isn't exhausted. Bad cells & good cells being attacked. Mental health being challenged. Consistently stable MRIs yet still more treatment. Why?? Symptoms keep worsening despite the many, many stable scans. Makes no sense. And raises many questions: is the treatment actually doing more harm than good? Is one of the drugs "masking" the MRI scans? Could the steroid be making certain symptoms worse since it just Loves to mess with muscles? So many questions, yet so few answers.
I like logic. I like answers. And I like respect. Doctors do not have all the answers-this I know. And although I don't have the privilege of using the prefix "Dr." before my name, I've been part of the brain tumor world for 7 years. Seven years of obsessively researching, reading, questioning. So when I ask questions-please do not dismiss me because we don't share a prefix.
And when I raise concerns about the health of the person I love with my whole heart, the person who I watch closely for any new developments, the person who I jump to make modifications to daily living for in order to minimize his frustrations, the person You only see every other month for 10 minutes at a time...so yeah, when I raise concerns and questions, do not dismiss me.
My concerns were correct. My confidence in you gone.
All the frenzy that followed my dismissed concerns turned out to be a good thing. New team of doctors established, long term steroid use complications controlled, intense physical therapy coordinated. All very good things.


My own self had to be put aside for a few weeks. Marathon training week 1 didn't happen, then week 2 didn't happen. And so on. Now with 99 days or so until marathon Sunday, I am so far behind in training that it wouldn't be safe. I cannot risk injury right now. I also truly don't know how I could fit the training in. It's even harder when there are two kids in the mix. I got teary eyed when writing the email stating I couldn't run the race this year and I got teary when I had to hit the big, red CANCEL ENTRY button. I have been told that right now, this all is my own personal marathon. I suppose-it's just minus the sneaks. And there is no medal for keeping shit together.

I don't like asking for help so I am very thankful to all the people who just started doing things. No matter how big or small, I am so thankful. 

Long time, no write

It's been a long time since I felt like writing something. This will probably wind up all garbled and out of sorts but so be it.

So after last year's marathon training, I was looking forward to running the 2012 NYC Marathon. Yet that bitch, Hurricane Sandy, had other plans. I remember getting the phone call telling me to go sit in my car (our neighborhood was still without power) and listen to the news. I ran out and turned on the radio to hear that the marathon had been cancelled. My initial reaction was immediate crying. I had worked SO hard because I had intended to make that marathon my very last 26.2 miles and I wanted to go out with a time I could be proud of. Selfish reaction - maybe so but I don't think that meant I didn't feel for what people were going through. I just couldn't believe that all my hard work and excitement was just DONE. In an instant.

After that, I backed off running. Happens every year. It's like the marathon kicks off my winter hibernation mode. I worked out but the sneakers never hit the pavement.

Then my appendix had some plans for me. That took me out of working out altogether. It also hit around the time that I actually decide I want to start running again.

Eventually, I was given medical clearance to start running again. That would be great to hear normally but all it really did was pile on the anxiety. Here's what some of you don't know -

I started running only a few years ago. I was the kid who, although athletic, would pretend that I ran the full mile in gym when in reality I walked one lap. I was also the kid who walked off the varsity softball team when we were told to start running laps. I've always been a walker - running scares the shit out of me. But a few years ago, I went to cheer on a good friend who was running her first NYC Marathon. I had never given two shits about that marathon or any other but I do give a shit about supporting my people so I was going. I spent that day filled with emotion (and sangria) - I cried watching all the runners go by and I cried watching the spectators cheer. I cried because our first cheer zone was directly across from Memorial Sloane Kettering, I cried when the father of a child with a brain tumor talked to Chris.

By the next morning I had decided that I would run the marathon the next year. Clearly I'm insane. I hooked up with The Tug McGraw Foundation and received a spot on Team McGraw. I wanted to run for a reason and any cause that supports brain tumor awareness, programs, research, etc. gets my vote. Since then I have trained for and run for this team the last few years. My long runs are always in my team shirt and people always stop me to ask about it.

What strangers and most of you don't know much of is that 7 years ago Chris was diagnosed with a tumor on his brain stem. Inoperable. Scary words to hear when you just gave birth to your second child. After months of aggressive treatment, the tumor shrunk and became stable. For a few years life went on as usual. Although we always knew the tumor was still there, lots of times it wasn't even thought about or discussed. Until the tumor decided to become active again. More chemo, more Avastin. Then a change in chemo since the kind he was on wasn't doing the job.

It's now been 20 months of non-stop treatment. Every 2 months another MRI which shows stability however Chris continues a slow decline. This coming week he starts another round of chemo (he's been off chemo but still on Avastin for a few months). He's tired. I'm tired. I'm also angry. Very. I fucking hate brain tumors. I hate everything about them.

So this year, I will be running my last 26.2 through the boroughs. I don't know how I'm going to fit in all the miles now that I have taken over all household responsibilities but I will figure it out. Because that's what I do. Figure out how to fucking maintain some sense of normalcy. I will train angry and hopefully that will motivate me to keep moving despite the ridiculous amount of miles, the lack of time, the tumor that I want to rip out. I will continue to ask people to donate - and I don't care if it annoys people. Try having a brain tumor enter your life to learn what annoying is.

I will write as therapy. I will write for those of you who are interested in reading. I will write to keep me accountable for the training.