"If there's a book you really want to read, but it hasn't been written yet, then you must write it."-Toni Morrison

I feel like I am all alone. I know I am not. I know there must be other people out there going thru the same crap I am. But God do I feel alone, almost always.

I spent more time then needed talking to a woman at Gilda's Club yesterday afternoon then I really should have. I was looking for a support program for Logan. She was asking me about Lo and I started giving her background info. Then I started talking about myself, and how there is nothing out there, how I feel so lost and alone. She didn't really say anything on the other end, and I was grateful for that. She just let me vent. I needed that. When I got off the phone, i cried. Thank God I was alone in my empty classroom.

Things are really starting to hit me now. I am losing strength, losing momentum. The first year I ran on autopilot. I was in fight mode. There was never a dull moment. Not only was I fighting for and with E, but I was also trying to cope with him hating me.

It has taken a long time to finally admit this to anyone. I haven't really told a real person, but here I am writing it on the internet. My husband hated me. All the websites I consulted told me this was normal. That cancer patients often take it out on those they love the most. Its almost like a natural instinct to push away those that love you, so, in the patients mind, you won't be hurt if something tragic happens. I called bullshit on that often. I mean really, I have heard tragic diagnosis bringing people closer, but rarely pushing them apart. But how the hell would I really know, because I couldn't find anyone else like me out there, a 30 year old cancer spouse and caregiver.

There are lots of books and support groups, and online resources for parents of children with cancer. There are lots of things for breast cancer spouses, and people whose older parents have cancer. But nothing for people like me. Hell even E's cancer isn't common in young adults, although it is becoming increasingly so. It seems the only people close to my age are husbands whose wives are battling breast cancer. And they are lucky because they are given so many support. I am not bitter, I just wish there was something for me.

When we sit in the waiting room at the oncologists office, we look so out of place. I talk to my old lady friends who are fighting colon cancer, and their spouses. But shit its not the same. They have been blessed with the gift of time. I have been married for 40 months. E has been fighting cancer for 16 months. That's 40% of the time I have spent married. 40 effin percent!

Since I am all alone in this, I have turned to writing. Some of the stuff I wrote never made it to the blog. It was just too personal. Those months when E hated me were really really hard. I am thankful that it really was the treatment, as I had suspected, and not a true hatred for me. He finally realized just what he was doing and saying. Don't get me wrong, things aren't perfect. But then again I don't think any marriage is perfect. If its perfect, then in fact its fucked up. Because someone in that relationship is hiding their feelings, or they are putting on a show for everyone else. I have seen plenty of that, especially being a cop's wife. FAKE ASS FUCKED UP PEOPLE/MARRIAGES.

I am thinking about writing a memoir. More for myself then anyone else. It would be to help people who feel completely alone. It would be raw, it would be from the heart, it will show my hurt and my sorrow, and my happiness. It will show what it is really like to be a raging bitch inside, but have to play nice. It will show what it is like to fight tooth and nail for the love of your life. It will show what it is like to have your heart break into a million pieces. It will show what it is like to be all alone. It will contain foul language, and lots of ellipses...because I like them. it might even lack the proper use of capital letters because i am kind of a lazy typist. yea...this might just be a decent idea.

So take a deep breath, pick yourself up, start all over again

Now nothing's impossible, I've found for when my chin is on the ground,
I pick myself up, dust myself off, and start all over again.
Don't lose your confidence if you slip, be grateful for a pleasant trip,
And pick yourself up, dust off, start over again.
Work like a soul inspired until the battle of the day is won.
You may be sick and tired, but you be a man, my son.
Will you remember the famous men who have to fall to rise again,
So take a deep breath, pick yourself up, start all over again...

Ahhh, Old Blue Eyes....if only life were that simple. But there is some wisdom to that. And that is exactly what we are trying to do.

A day after we came back from out amazing respite thanks to FPS, Eric had to go to Sloan for a CT Scan, and to meet with his oncologist followed by treatment. It was a long day to say the least, and he was stuck up there himself.

Sadly eric was told by Dr. Kemeny that they found more tumors on the liver. I guess this was to be expected, considering the PET Scan glowed when he had his tumor removal surgery a few weeks back, but it is still tough to hear nonetheless. I was hoping that the rounds of chemo since the surgery would have made them nonexistent, but those suckers are fighting the chemo and not backing down. Luckily, Eric handled it ok, and even posted on facebook a status about how it looks like this beast (cancer) wants to go a few more rounds with him, but he's ready to keep fighting it. He said he won't give up. Its a beautiful thing to see despite getting pretty shitty news. I am so proud of him.

On the plus side his CEA level FINALLY went down to 6 after holding steady at 7.9 for over a month. In the words of Madea...


So we keep fighting on. Taking every day as a gift from God, being thankful for all that we do have, and continue to be blessed by crossing paths with special people during this journey. I have said this before, and I truly mean it, if it had not been for this experience, I don't think we would have learned what love means. Love isn't just a word or a feeling, it's an action too. And we have been shown love in so many places we may never have seen it. I have also learned a lot about life. Wisdom and beautiful secrets usually only those with many more years then I get to share. As much as cancer sucks, and boy does it suck, we are lucky. Without cancer, we would have never been so truly blessed and touched in so many ways. Much love and happiness to all who read this....(if anyone even does).

I Never Wanna Die

Now
For the very first time
Don't you pay no mind?
Set me free again
You keep alive a moment at a time
But still inside a whisper to a liar
To sacrifice but knowing to survive
The first decline another state of mind
I'm on my knees, I'm praying for a sign
Forever, whenever
I never wanna die
I never wanna die
I never wanna die
I'm on my knees
I never wanna die
I'm dancing on my grave
I'm running through the fire
Forever, whatever
I never wanna die
I never wanna leave
I'll never say goodbye
Forever, whatever
Forever, whatever

Foo Fighter's "Walk" came on the radio when Eric and I were driving back from my grandmother's birthday party a week ago. He had never heard it. I had heard for the first time right about the time he had had his last surgery in April of 2011. Then I heard it over and over when he was hospitalized. It sort of became my private tribute to him, and my personal fight song. Anyway, that night was the first time he had ever heard it.

The irony does not allude me that, although this song has been out for months, he hears it for the first time about a week after being told his cancer is back. I think it was fitting though. Especially the part where Dave Grohl screams I never want to die over and over again. That's Eric. He has told me this time around he is not sad or bitter or questioning why, he has accepted and is ready to fight. But I watched his eyes as he listened to this song. It touched him. He never wants to die, who would? And I know he won't give up, no matter how hard it gets.

What i feel is he anger and passion of the song. I will do everything in my power to keep Eric happy, healthy, and ALIVE. I want to grow old with him. Sure I am pissed right now. Parts of me are angry because I don't understand why he has to fight so damn hard. But that fight and that anger is what keeps him alive. I realize that now.

I have decided to start updating this more. It let's me vent and keeps me sane. It also helps keep people up to date I presume. I don't know how many people even check this. I still keep the carepage (click HERE if you want to sign up, you get email updates when something new is posted) for more medical updates. This blog I am going to use for more of the raw emotional part I assume. I have no idea who checks and reads it so it makes it easier I guess. I don't have to worry about my mom yelling at me for posting info and complaining, or falling apart, or just being 30.

I just want to be happy. That's all, happy. I am so tired...And I miss the man I married...

For Pete's Sake, Take a Break from Cancer

Through an amazing organization called For Pete's Sake (FPS) our family is being given the opportunity for a respite. This grassroots local non-profit is pretty amazing. I highly suggest you visit the page to learn more. Basically this young woman Marci lost her husband to cancer when he was just 30 years old. After his death she dedicated her life to helping others going thru the same thing. It's truly inspirational. Anyway, I had called to ask a few follow up questions and ended up talking to this girl Amber. This was all before we found out Eric's cancer was back. I was so giddy and happy that Amber asked me to write about my experiences. We ended up being the feature family for the month of November. I was really touched. I started to write Amber then got sidetracked. I finally finished that letter today and wanted to share it. I am very touched by this organization, and hope that you support them in any way. They really make such a difference in the lives of others.

Amber,
When I spoken with you a few weeks ago, after chewing your ear off forever, you had asked me to write down my experiences and email them to you. I sat down to begin writing this, and then got sidetracked with the million things going on with life. But I knew I would get back to it. FPS has blessed us with the opportunity to go on a respite, and the least I could do was share my personal joy with this experience, and how touched I was by the kindness of others. I was feeling such happiness and joy as I talked to you. And I couldn't wait to share my experiences. And then my world was altered, and I was left in a state of disillusion.

On Monday November 7th we were told my husband's cancer was back. After all the surgeries, and treatment, and almost losing him to infection over the summer, he was feeling great and technically 6 months "cancer free". After telling us those horrible words, the next thing they said, was "You will still be able to go on your respite. We will schedule treatments around it." And with a few words, this respite became so much more then just a break after months and months of fighting, it became a break in his next battle we now face. And you cannot even imagine how much more this opportunity means to us then before (Not that it wasn't already AMAZING). In some ways I am still in a state of shock. I knew there was a chance this could come back, I kept watching the lab reports and the CEA levels slowly rising, but I just hoped and prayed he wouldn't have to go through this again. But here we are, ready to fight. A little battered, somewhat broken, very tired, but not yet ready to give up.

I had mentioned to you on the phone that a little while after we had started the nomination process, I actually read Marci's story. I can't really tell you why I hadn't before, but I just hadn't. I researched and read every other page of the site, but her story was the one thing I just couldn't yet read. Eventually I got a box of tissues ready, went in my classroom all alone, and read it. I am glad I was alone and had the tissues ready. I felt like I was reading my own story. I was newly married to the love of my life. I was just turning 30 years old. I was trying to move upward in my career in the field of education. I had become a cancer spouse. And Cancer has invaded and threatened all that I loved so much, and worked so hard for. My husband, my big strong 35 year old Philly cop, was fighting the toughest criminal he ever had encountered. A horrible thing that wanted to kill him, colon cancer. Colon cancer that had been traveling and growing inside his body for years, with no indication it was there. Colon cancer that was Stage 4 when they finally found it. I just recently found out that when I wasn't in the room with him a doc had told him he had about 8 months to live. Who were they to put a time stamp on life? I didn't realize my husband had an expiration date.

But he fought so hard. From Oct 2010, they day of diagnosis to this next round in the ring. But all the time, Eric has just wanted to be "normal" he is sick of being the guy with cancer. He is tired of us being the cancer family. We just want to finally have happy memories. And that is what you are giving us the chance to make. you are enabling us to take a break from cancer, and be a family. Your enabling us to have an opportunity for our sons to have memories that don't involve hospital rooms and oxygen, and sickness that chemo causes. you are helping us to live.

Thank you so much for all that you do. Thank you for making this hell just a little bit easier. Thank you for helping me, feel like a mother and wife, and not a caregiver. And thank you to Marci, for taking the worst experience of her life, and turning it into such a beautiful thing for others. Through her strength and dedication, Pete lives on.


Sincerely yours,

Jeaneane

Numbers...

I know I haven't updated in a while, there is just so much to write about, I need some tie to really think it out. But until then I would like to leave you with a post I put on Eric's facebook on March 16th, 4 days before Eric participated in his First 5k sponsored by Colon Cancer Coalition .

life can sometimes be about numbers. 5 months ago you were diagnosed with cancer and had part of your colon removed. the stage was 4. 4 months ago today you had the first round of your tumors removed from your liver. in 4 days you will run your first 5k. 5 weeks after that the rest of your cancerous tumors will be removed from your liver. you are beating the shit our of cancer, and I am so proud of you! I love you!

Eric Finished the 5k...he might not have come first, but he didn't come last, and he finished.He continues to beat the odds, those numbers in life.


Eric Finishing up the race with his friend Mike



Eric Anxiously awaiting the start of the 5k....notice Colon Cancer Warriors and Survivors wore special colored race bibs


Our Team: Dial's Dooker Troopers


I thought of a new song today. Eric had chemo yesterday and feels like complete shit. And a lot of our friends who are battling cancer has felt pretty shitty too lately. These lyrics came to mind....


But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The one's that you've been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying

If your going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there

Don't worry....things will get better, and thre is a light at the end of the tunnel.

The Doctor's Wife

There is an awesome series in the New York Times following the journey of Dr. Bach, a physician at Memorial, whose wife was diagnosed with cancer. I found the blog from a post made on the Memorial Sloan-Kettering Facebook Page.

Much like myself, Dr Bach is blogging about his journey. His series, The Doctor's Wife is very real. In the first 2 submissions I have found myself nodding, tearing up, laughing (the form comment) and just FEELING everything Dr. Bach is going through.

Ok so I am not a Doctor, so maybe I do not know the clinical end, but I am a highly educated young woman who is so deeply in love with her husband that she will do anything to keep in him alive. I have taken on the role of caretaker, and have completely educated myself with regards to colon cancer, especially with regards to Eric's current diagnosis.

I highly suggest everyone take the time to read this frank account of Dr. Bach's journey.


If I could be you, if you could be me
For just one hour, if we could find a way
To get inside each other's mind
If you could see you through my eyes
Instead your own ego I believe you'd be
I believe you'd be surprised to see
That you've been blind

Walk a mile in my shoes
just walk a mile in my shoes
Before you abuse, criticize and accuse
Then walk a mile in my shoes