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Trying to remember that there is always a reason, always something that makes you smile during the day- recognizing the event, person or situation that made you smile will make your day seem that much better.

Tuesday, July 21, 2015

Whispers..

I heard you...and I thank you for being close today..
Everyone someone asked..how did yesterday go...
You whispered...take a deep breath...they ask because they care..
When their unending optimism came out with...this will be it...you will get good news..
You whispered...take a deep breath...they say it because they don't want to watch you go through this anymore..
When I avoided the subject and they brought it up again
You whispered...take a deep breath..they just want to make sure that you know you can talk to them...
When I went into the bathroom and surrendered to the tears..
You whispered...take a deep breath...take a moment...and then get back out there and make them see you are okay.
When I saw people who were in from out of town and noticed his look of confusion and then when understanding dawned and he didn't know what to say
You whispered...take a deep breath and say what he needs to here you say.
When more bad news from Pittsburgh presented itself and I sat on the couch, with tears rolling down my face..
You whispered...take a deep breath...
You whispered..it's ok to feel like this..
You whispered...find the strength I am giving you and let her know that it will be okay..
Tonight, as I get ready to close my eyes for a few precious hours of sleep...I whisper, please...I need you.  I whisper...I want to push back the thin veil that separates us and feel your reassuring hug and never let go.  To feel your strength and support.
You whisper to me...I am here and I will always be.  Take a deep breath child and let me help you.  Take my strength that I give to you and walk your path. 
You whisper to me...I don't know where the path goes but i know you aren't walking it alone.  We are all here, walking beside you, picking you up, supporting you.  When your strength fails you, I will give you more...and I will always be here..
I say out loud to you...thank you to my angels for giving me strength to fight this fight...even when I am not sure I can..
You whisper...just breath darling....I love you.

Saturday, July 18, 2015

This week

Honestly this week has kicked my ass.
I expected to feel better, being done with treatment..but I didn't
I was doing too much...trying to keep up.
I was getting in my own way...forced to eat because of low blood counts...but throwing up almost as fast as I was eating.
I look like I am shooting drugs...
The vampires were fed well this week with all of the blood work I have had done.
Trying to do it all...but failing miserably because I couldn't get out of my own way.
It was a rough one....topped with an epic meltdown because plans change.
I have to admit something...I am a bit of a control freak...
And having no control is killing me.
Asking for help or time is not my strong suit and I need it.  Desperately.
I can't do it all...and when I get that look that it is okay...
Or have someone tell me that I am trying to do to much makes me want to punch something...
It isn't an excuse...but my super woman cape...that I refuse to take off...is failing me right now.
I am in the fight of my life and you would think I would cut myself some slack...
Knowing that no one is especting me to move moutains...or even expecting me to do anything but simply fight is killing me.....
Cause you know what...it really isn't everyone else I am afraid of disappointing or letting down...it is myself.
No one has any expectations of me right now...just me...
And I am not meeting them.
I don't know how to not fix it..
I don't know how to slow down...
I don't know how to give myself time and space...
And right now...it is a lesson that I need to learn and I am failing...miserably at this one.

Wednesday, July 8, 2015

In the blink of an eye

In the blink of an eye, everything changes.
One moment in time, even though you think you are prepared, your world shatters for a second time.
Staring, dumbfounded, hearing those words....brain tumor...back...growing..
A million thoughts swirl, coherent sentences refuse to form.
You know, you should be listening....asking questions...and you hear the Charlie brown teacher...and lots of blah blah blah.
Because, you see, that isn't the way it is supposed to happen.
The walls are down...still being rebuilt from everything else that went on...it has only been a month since you went from fighting next to your husband through radiation treatments, second opinions, doctors consultations until finally, the treatments are  finished and you wait to hear whether or not they worked. Knowing that you don't have those answers yet, not knowing what that future holds.
And all of a sudden, the other shoe drops.
Those headaches you have been ignoring for months...
That random pain that you pushed through so that you could be there for him...
The sleepless nights, the medication changes, the nausea.
It was just supposed to be stress.
It was your body's way of reacting to feeling utterly helpless.
Maybe we should do scans...
How many times did people, loved ones, coworkers who know your history say that...
How many times did I wonder out loud to the doctor to be told it is just stress.
Finally relenting, because that fight was paused for a little while and nothing was working....nothing made the headache go away..
When you said the number...58 days..the doctor sat up and took notice...said ok..let's just be safe..
Lying there...perfectly still...with a.million thoughts going through my head.
It will be ok...
Be there done that..
And really karma can't be that unfair...
After everything with hubby..
After a cancer diagnosis and contiuing treatments with best friend...
It just can't happen...it just can't be..
And then it did.
All of a sudden, I am right back where I was years ago.
Facing the same thoughts
Facing a diagnosis
Facing a treatment plan that means poisoning your body and hoping it kills the bad things before it destroys everything else.
How do you say the words out loud...knowing you are breaking the hearts of those who love you..
How was I going make this okay....tell everyone I love it would be okay...when I didn't know it would be....when I didn't know where I would find the strength to fight..
Emotionally, I was still in pieces from everything with hubby...
Mentally, I didn't have a reserve of strength to pull from.. .I had used it all...my well was bone dry.
Talking about it was surreal..
I couldn't believe when I told my mom that I was saying the words again....that this was really happening...
It was a nightmare...and I wasn't waking up...it wasn't fading with the sun..
Six weeks...to start.
A handful of pills...Monday through friday.
No, the side effects aren't any less.
Iron counts are low
Red blood cell counts are on the very edge of being low.
28 treatments out of thirty done.
Endless nights on the bathroom floor
Weird shooting pain all over
Protein bars, six pretzels and juice...everyday..
Because that is all that will stay down...
Three am demons that visit...
Thoughts of mortality that swirl around.
The completely overwhelming desire to yell, scream and cry...which happens...at three am when no one else is around to see it.
The wall wasn't rebuilt..
And now..
Well, now it has been obliterated..
I can't even find a brick to start rebuilding it...
Emotionally raw...physically exhausted
But if you ask, I am just fine...because it scares the hell out of me to say anything else.
I am surrounded by amazing people in my  life...people who love me, who care about me and who will do anything I need...they all want to fix it...they all want to make it better...and they can't.  
I have to be strong...
I have to be positive..
I have to not give into the demons because they are unforgiving when they invade your mind..
But I am tired..
Tired of being strong..
Tired of smiling...
Tired of being "fine"
I needed to write.
I need to know that there is one place that I don't have to be fine.
It isn't going to be pretty...
It isn't going to be smiles...
My emotions need to come out...the good, the bad and the ugly...this is my safe place...the place that isn't invaded by someone I need to see when I wake up in the morning...when I go to work or the grocery store.
There are amazingly good things and people in my life...they will be documented too...so I can look at them and reread them.
But I need to be true to the other side.  The one I don't show often to people...because that is the reality of this disease...the reality of life at the moment..
It is my journey....one i wish i wasn't on...but we don't  always get to choose our paths...the only thing we can do is keep putting one foot in front of the other...one day...one hour..one minute at a time...and hope that you make it out the other side in one piece.

Monday, March 16, 2015

From Fighting...to waiting

Tomorrow... a day we have waited for. 6 weeks.. just get to March 17th.. Tomorrow is the 30th treatment. The last one. Ever. Whether it works or not. As I sit here...in my cold, quiet house and the tears pour down my face, not for the first time during this ordeal, and I ponder the last few months. He is out...at a meeting...as he has been throughout this whole ordeal. He did okay... worst side effects hit about two weeks ago and have been relentless... He can't taste anything... and food is one of his only vices... he tries so hard... he will put a mouthful of something in and scrunch up his face to see if there is anything... and then his face will fall and his sad puppy dog eyes will look at me and say "nothing...nothing at all"... His throat has been terrible because they are radiating through it from five different angles.... there is calcified ear wax in his ear canal so he can barely hear out of his left ear.. and he is exhausted... but he is almost done.. this chapter is closing. We won't know for months if it works.. not shrinking anything.... not relieving any of his symptoms just supposed to keep it from growing... The last six weeks have been the hardest of my life. Someone at work asked me today. even harder than your diagnosis. 1000% yes. Mine I could handle...mine I knew what it was and what was going on...mine was mine...and honestly...I was so focused on getting me better that, as selfish as it sounds, the people around me were not always my focus. And quite frankly if something went wrong when it was me...I wasn't going to be here to deal with it... I have never been more scared, useless, hopeless, helpless in my life than I have been in the last six weeks. I had to keep my shit together- I didn't have a choice- had to be strong for him, for me and for everyone else. I had to take care of him and let him get better and not worry about anything else....I didn't have the ability to let anyone else see that my world...the walls that he holds up for me on a regular basis....they were crumbling around me and I didn't know how to fix them. I always thought that I could be one of those woman who didn't need him. Don't get me wrong, I knew I loved him and wanted my life to be with him, but that god forbid anything happened I would be okay. I realized, I wouldn't be. I would not be okay. My whole world would fall down around me and I don't know if I would be able to get up. I have woken up with the thought that he might not be around forever everyday since November 16th and although there are only a few people that I would admit it to, it scares the hell out of me. So tomorrow, we go from fighting this everyday to waiting. Waiting to see if it worked Waiting for tests Waiting for months to pass The radiologist was asked what happens if the radiation doesn't work. He said we are thinking positively He was asked "What symptoms should we be looking for if it were to start growing again" He said "you shouldn't think like that, this is going to work" He was asked "Okay, I get it, but just in case, what should we do" He said "Hope it worked" I Said " I buy a lottery ticket every Wednesday and Hope I win, but I haven't gone out and bought a yacht yet" He laughed and still didn't answer me. So I guess we hope the odds are better than winning the lottery.

Saturday, February 14, 2015

update

Just wanted to stop in and wish you all a very Happy Valentine's Day... WE didn't do much today....went to a drs appointment and breakfast. Getting ready for a major snow storm that will bring lots and lots of snow and high winds.. I am not entirely sure where we are going to put it all... there is currently a fifteen foot snow bank next to the porch...that will be a bit higher by tomorrow. Only 12-18 inches of snow instead of the 24-30 inches they were predicting so I guess that's a good thing. Normally but this time of the year we are in single digit countdown mode to our tropical vacation but we had to skip out on that this year due to hubby's treatments... He is doing okay...he has had treatments so far...so he hit the 20 left to go mark. He has started with some nasty side effects including a sore throat, almost constant headaches and he is exhausted. Normally, he (like most men) is a big old baby when he doesn't feel good..but he has his super hero cape on and is pushing himself to keep doing everything... Naps occur frequently in the afternoon and he is starting to realize that his cape won't keep him flying for very long..and that's tough... but he still smiles and tells me he's "fine". I worry and stress is taking a toll but I try to put it away when I can so that he doesn't see it often... He keeps telling me that it's no big deal and he is okay... and I know he is...in most ways....but I will keep worrying... hope that this short message finds all of you happy, healthy and loved. AS the snow falls from the sky I wish on each of those snow flakes that you are all doing well...

Sunday, February 1, 2015

Lots of travel....and a treatment plan finally!

I feel like I have been doing nothing but traveling for the last few weeks...and in reality that's true. Our national sales meeting was two weeks ago and then I got stuck in Florida during the blizzard of 2015. I am one of those people that when a trip is supposed to be over, it is supposed to be done. I switch my brain off travel mode and am ready to be home. We met with the dr that will be treating hubby before I left and a treatment plan is in place. He starts radiation treatment on Wednesday, five days a week. In a way, Florida was good because it allowed me to get out of the very close perspective and allowed me to take a 1000 foot view of everything again. Meetings were good and my mom met me down there when the meetings were over. Her best friend from college has a house down there and she and her daughter met my mom and I am we had a girls weekend. We shopped and went to the beach. We went on a dolphin tour and hung out and just talked. One of the highlights of the trip was getting to meet someone you are all familiar with....Bouncin' Barb!! She drove down to meet us, showed us a little hole in the wall place that was outside and had fantastic food and dolphins jumping out of the water next to us. She is absolutely lovely in person... She made me smile.. She made me laugh... She made me realize that online friends are just as good "in real" life as they are online. Putting a voice to her words was amazing and I am beyond grateful that she took the time to come down. Now I am sitting in yet another hotel room, getting ready to fly out tomorrow morning before the snow. This time to Nashville for training. I am excited and looking forward to it..but at the same time am worried about hubby. I know he will be fine...but....I can't 100% guarantee it... All I keep saying, is I have to get through the next 6 weeks... 6 weeks of treatment and living on the edge... but in the grand scheme of things....it's only 6 weeks. 42 days 1008 hours 60,480 minutes... no problem right? Hugs and love to all!!

Wednesday, January 7, 2015

Today was supposed to make it better

Sitting alone at my house..
Hubby is off to another mason meeting.
We went to Boston today for another consult with another dr to figure out a treatment pln for hubby.
They found a tumor in his neck about seven weeks ago.
Benign...but not exactly sure what it ia.
This dr today gave us another type he thinks it is.
At the end of the day...I am told it doesn't matter..treatment is the same.
I am tryong...desperately...to put my faith in what they say.  Failing at the moment but still trying.
Radiation is the treatment.
Once a day for five to six weeks.
Luckily, in our home town...so no relocating to Boston for us.
And we wait. ..again...for another dr to get to us.
To do more tests to figure out where to localize the treatment.
Two steps forward today...which should make me feel better.
It doesn't...
I heard that the one person who means more to me than anyone in the world is going to have to go through hell. 
Sickness,  fatigue, sore throat, taste buds changing..
Figuring out that he is not invincible..
Having to say no...because he won't be up for it...
Fighting..not to make it go away but to make sure it doesnt get any bigger..
Dealing with the pain and symptoms that he has now for the rest of his life.
It was supposed to make me feel better to have answers...instead I feel completely useless and defeated.
I am sure I will differently tomorrow
There are good things that came out of today...
But right now...I just want to scream and cry...