Life...

     This year is the first year that there are no gifts under our tree. And this is the first year that I'm totally ok with it. I don't say this to get sympathy. Please don't take it that way. I say it because for the first time ever in my 46 years I've come to realize that I've always had what I need. The gift of life. Life cannot be bought, bargained, or begged for. It is a gift. My life forever changed this year. Physically, emotionally, and financially. Things I once thought were a definite are now uncertain. But we have LIFE! God gave his son so we could have eternal life. Did you see how God slipped that word in there? Life. Life is what it's all about. Life while we are here and life in the hereafter. So this year, celebrate life. I know I will. I will celebrate the life of my beautiful husband, my two healthy sons and for my life for being able to see it all,  for yet another Christmas. We have nothing without life.

faith in humanity restored.

  Today I got the most fabulous phone call.  A call from Sharon Bigelow.  Sharon is from the Navigate Cancer Foundation.  The Navigate Cancer Foundation is a non-profit organization that pairs up cancer patients and their families with knowledgeable oncology nurses, dedicated to improving cancer care outcomes.  She was a breath of fresh air.  A calmness in the storm,  a drop of water in the desert.  She gave me such encouragement.  She gave me priceless information...all at no cost to me.  It's really hard to believe there are people still out there like that. 

 She also reiterated how curable this cancer really is...how wonderful the prognosis really can be...I so needed those words.  She even sounded as if she were crying with me as I spilled the contents of my heart.

I had truly lost my faith in humanity here lately.  We all watch the news..bad stuff here, bad stuff there, bad stuff everywhere.  Kind and generous people are few and far between and random acts of kindness now are almost unheard of.  That is, until I met Sharon...

Sharon,  though I'm sure you might never see this blog, but just in case you do, in case fate brings you to this page like the call I received from you earlier,  I'd like to say thank you.
Today in the spirit of the season, you made my heart grow 3 times its size.

 

movies....

Just hearing the word "cancer" will make you go into immediate fight mode thinking.  It will force you to decide quickly what is important in life and what is not.  Trust me, long lines at the super market or bumper to bumper traffic is no longer of importance.  The word cancer causes fear to the very core of the soul.  It is like a thief in the night that has broken in, with no artillery in the house, to fight him off with.  It is an unwelcomed intruder. 

 

Have you ever watched those scary movies where the  girl goes walking off alone, in the woods?  Of course you are thinking the whole time, "Don't do it idiot!"

 

Or have you watched the Home Alone movies, where this genius little kid booby traps the whole house against the crooks trying to get in?

 

 

The reason I recall these 2 movies scenarios are as follows:

 

 

1, You really don't know what’s in front of you. And you didn’t think you were stepping into danger.

 

2,  There really is no trap you can set to protect you from the dreaded "C" try as you might, every precaution you lay down is of no guarantee.

 

But, my favorite movie of all time is "You’ve got mail" this is the very ending; I'm hoping this whole saga has.   To be wrapped in each other’s arms.  A bright long and healthy future ahead and a happy silly dog barking in the background....

could that be a little sun?

Today it may be raining outside...but in my heart, the sun was shining.  We had a great day.  We attended a holiday brunch and ate ourselves into an oblivion...ahh  It was so good to see old friends and meet some new.

 

But, now for my rant...Let's talk about my husband’s sister...grrr (this blogging thing isn’t so bad) She is the most evil witch I have ever met.  She hasn't even talked to Ray in over a year and now seems to be the primary megaphone of spreading the word of his diagnosis...Something’s I'll just never understand.... it sure is sad to answer the phone and it be a childhood friend that Ray grew up with, wanting to know 'all' about it...The first words out of his mouth were “Ray's sister called me and......etc"   (excuse all those run on sentences, I write like I talk)  People really have balls, he hadn't even talked to this particular friend....in let's see, how long???  Maybe I'm being too harsh.  Maybe he meant well...but I wish friends and family would call just because they care about you instead of when you get a 'cancer diagnosis' or win the 'lottery'

I could go on and on about his family...but for now, I won't.  I'm just thankful for the few and faithful friends that we have that remain steady. They take up the slack for the rotten families that have been dealt to us.

 

But to sum up the day, it’s been good.  Ray remains positive and I’m going on 24 hours without shedding a tear. So that to me is a win, win.  It’s taking me a long time to get over the shock of the whole thing. I know I’m on a roller coaster of emotions.  I may be crying tomorrow or I might be as strong as the rock of Gibraltar.  All I know is we have to take it day by day…minute by minute…We will get through this.  He will get well.  I refuse to believe anything else. 

 

Is there a God?

I don't know why I'm so spiritually perplexed here lately. I used to never ask such a thing. But, lately I seem to have a case of the " Doubting Thomas" syndrome.  Is this something we all go through when we  get devastating news?

I hate to even type it. But, according to God if its in your heart, he already knows. So, there's  really no point in trying to hide it.

What kind of God would allow cancers, murders, school shootings and death of innocent children? And if he's real, then who would want to serve a God like that?

In the bible they speak of great miracles that were witnessed. They didn't have to wonder if there was a God. God spoke audibly to Adam and Eve, parted the Red Sea, turned water into wine and so on...we've all heard the stories.  Why are all of us now left to only stories...and told by preachers to have faith.  We don't get to see any of those wonderful things.  I don't know about you, but I'd sure like to hear God whisper to me "Peace be still" from time to time.


Although  my faith is very weak at the moment, I will continue to hold onto what thread of it I have left. And continue to hold onto the words, "This too shall pass."

Reminiscing....

This coming February will mark the anniversary of when Ray and I first met.  I was sitting at home in Tennessee one night playing on the computer. He was sitting at his home in New Jersey doing the same thing. By chance we both landed in a chat room, a voice chat room.  The moment I heard his voice I was immediately smitten. He said he had the same feeling. There was just an attraction so strong that neither one of us could understand it...but we ran with it. This particular chat room you could either talk or type, quite extroadinary.  I know from that night on I couldn't wait to get up in the morning, run to the computer, log on, and here those prescious words. "You've got mail."  My heart would literally skip beats, my breath would get shallow.  We quickly exchanged info, and the phone conversations immediately insued.

To make a long story short...I moved to New Jersey 3 months later. Lock, stock and barrel. We knew we had found our soul mates in one another. And it felt good.  We've always said that we have a scary kind of love.  Meaning, that we always fear something will happen to one of us. And the other would be left only to die of a broken heart. He is the very reason I wear a seatbelt to this day. I hate those damn things. And face it, in Tennessee it just wasn't something that was ingrained for me to do. But, because of him I buckle up...not because of the law or fines or any of that shit. Just for the pure reason of I'd never want to cause him pain.

Well to change the topic...how many of you have ever seen those cancer center of America commercials?  You know the ones where they appear so sympathetic and empathetic?  They seem to make it appear that they will be there for you know matter what. Well, I called them. The first and foremost important thing on their minds is what type of insurance do you have? And once they found out that I have an insurance they don't participate with, conversation over.  The damn almighty dollar wins out again. Another door slammed in our face.  That's ok, I'll keep knocking......

from Xanadu to Xanax...

  I realized,  I have to have some help...Help of the chemical kind. And I hate it.  I've passed by the medicine cabinet many times without stopping, until yesterday that is.  I felt my body breaking down.  I went out yesterday to the pharmacy to pick up Ray's meds and I collapsed on the stairs in tears when I arrived back home.  So, 1 mg of Xanax seemed to be just the little bit of (and I stress 'little' bit of) relief I needed.

We received the report from Fox Chase Cancer Center.  I also spoke with the Surgeon who relayed to me the pathologists prognosis.   "The pathologist said that if you
could choose any cancer type to have, then this would be the one.  It's slow growing and usually responds well to treatment."

 

I'd say that's good news.  There are so many subtypes of lymphoma.  I plugged in his particular type in the computer and found that this type has a 90 percent cure rate...90 percent!!!!  Hell, I don't think the odds of us getting to and from work safely everyday are that high!  So, this was great news.

We meet with the oncologists on Dec. 26th.  We will find out more then.  We still have to go through a body scan and a bone marrow biopsy to see what stage we are in.  I hope its only stage 1...please pray for stage 1!!!   Ray had a lymph node removed 18 years ago from the same arm, same spot, and the lymph node was the same size. (they are golf ball size)  Being that this type of cancer is indolent (slow growing) we are sure he was misdiagnosed way back then.  When he had the node removed 18 years ago, Ray recalls having it at least 8 years prior before even having it seen about.  You'll never guess the reason why he went to the Dr back then... Jackie Onassis!  That was back when everyone was talking about how she had died of lymphoma and they were giving all the warning signs of the disease.  Ray said then "Hell, I got a huge node under my arm, better go have that bastard seen about."  Ironic, eh?  only to be misdiagnosed....damn. 

My youngest son is in town for a couple of days and will be staying with us.  We have a very nice Holiday Brunch to attend tomorrow.  It will be good to see old friends.  Mimosa's all around.  Today I seem to have a better outlook...let's hope it lasts....

waiting for tomorrow

It's so odd how things are more obvious to me now than what they used to be.  I mean, I actually will stop and watch a bug crawl, or a leaf fall from a tree.  I watch the kids get off the school bus one by one...It's like life looks more different than it ever did before.  I'm all of a sudden, in no hurry...I want to savor each and every moment.  Every morning I'm the first to awake, and at night the last to go to sleep.  I watch Ray every chance I get.  I watch him when he sleeps.  I watch his chest rise and fall.  I watch him in such a peaceful somber.  Am I sounding morbid to you?  I don't mean too.  Its just now I notice things more.  I appreciate things more.  The world is a different color.  I'm seeing in HD so to speak.  I'm savoring every moment that he's well...before the real sickness hits.  I hate that I know so much about cancer...I wish some of it would be a surprise...but not so.  I've seen it..I've treated it....I've cried about it...It's a horific disease with the treatment just as horific.  Perhaps this is why I'm so afraid.  I hate to see a stranger go through this..so you can imagine how I feel with the cards being dealt to my husband....

Have you guessed that I'm a pessimest yet?  Guilty as charged.  But, that's who I am.  I think that's what has always made me a good nurse.  I've questioned Dr's many times about meds and care to pt's. I've never been one to just go with the flow.  I make a Dr. earn his pay check.  If you want an advocate, then I'm your girl.  Ray said that God put him in the best nursing hands possible.  Whew, that's a big title to up hold.  But, I will be his voice.  They are already talking in words he doesn't understand.  I interpret.  Ray likes it that way.  I guess that helps take a little stress from him.  He didn't even want to take the phone call from the Dr.  He wanted me too...and I did.  I'm the one that had to tell Ray that he has cancer...it was one of the hardest sentences I have ever spoke.

I have cried now almost non stop for days...My eyes hurt.  I honestly have skin breakdown underneath my eyes where I have wiped so much.  I know things have to get better one day.  I hope tomorrows that day.....

It will never be ok....

These are just my random thoughts. How I feel…I don’t expect to be judged for them…I don’t expect anyone to try and give me answers…this is just the only way I know how to cope right now. There will be plenty of spelling errors, fragmented sentences and multiple words used incorrectly..I'm no writer...I'm just me. If you’re reading this, I guess in some small way you care…and for that I thank you.

So, for those that don’t know...my life changed forever on 12/11/12.

My best friend, confidant, lover, husband, my ALL was diagnosed with Hodgkin’s Lymphoma.

I’ve never been hit so hard in my life…It’s like someone sucker punched me in the gut and then threw me into a bottomless vat of water.  I couldn’t breathe, I couldn’t  talk…and for a moment I couldn’t even cry…now I know the meaning when people say that they felt they were in a suspended animation…it’s like you can see things, but you can’t hear them…and then when the initial shock wears off everything seems to be moving in slow motion.  A drop of water leaking from the faucet takes forever to hit the sink….

I’m angry…no, I’m fucking pissed off!!!  I want to run screaming, I want to hit something, I want to rip things in tiny bits…but what good would it do?  Nothing!  He didn’t deserve this. He’s the most caring compassionate, loyal, devoted husband, friend and man that I have ever known.  He has never put himself first…N.E.V.E.R.   I want to take this cancer from him and put it into me.  I don’t want him to suffer as I know he’s going to, when the treatments begin.  The treatments alone come with a shit load of risks..not fair…not fucking fair…this wasn’t the way it was supposed to be…

With all that we are facing…sickness, weird looks from people, financial devastation, etc…what do you think his first thought was? It was ME, he is worried about me…ME!  It’s not about me…but I’m still his main concern…God, Why? Why is this happening?  When will I stop crying? When will I stop begging you for help? When will my heart stop hurting?  I know I have to be strong for him.  I know I must fake a somewhat happy face when he gets home..I know he needs positive energy from me. I know he needs some sense of normalcy.  I’m all he has to turn to..but how? HOW? HOW? HOW??????? How do I not let him down?  How do I pass the most important nursing assignment ever put before me?

People tell me “It will be ok, cheer up, don’t be negative!”  Are they all fucking crazy???? These are all ear pleasing words.  I used to say these same things to families all the time…I was a hospice nurse for Christ’s sake…things might get better…but it will never be ok.  Is anyone listening??  IT WILL NEVER BE OK!  My husband has CANCER! And it will never be fucking ok…..