(Almost) a year ago...

Isnt that the truth?

Tomorrow marks one year since the surgery John had on his arm for his misdiagnosed "pinched ulnar nerve" (which turned out to be a malignant peripheral nerve sheath tumor...), andon 11/3 it will be one year since his diagnosis.

I'm acutely aware of the reality and severity of my situation, but this tiny little part of my brain still has trouble coming to terms with the fact that the "movie reel" of those four months that continuously plays in my head is, in fact, REAL.  

John was misdiagnosed, not treated for cancer for a year until it because so bad it could not be treated, and then in less than four months, he was gone.

No one could've ever convinced me this where where I would be a year later.  And yet here I am.

It has been 8 months and a few days since John has passed.  Time has not made things easier.  People tell you that it will, but people lie.  I wouldnt call this situation "better"- I'd call it "different".  You become more used to what happened, you accept it more, you carry on with your life as best you can....but no, it doesnt become "easier" to lose your husband and the father of your children.  Its a situation I can never fix and it bothers me to no end that no matter what, I never, ever will be able to change the outcome of what happened to John.

I miss you tons, John.  More than anyone would ever know.  Not a day goes by that I dont think of you, miss you, or wish you were here.  In fact, sometimes its multiple times a day.  Sometimes it feels like its all day.

I wish you were here for me and more importantly, I wish you were here for our kids.  

Memories that leave you feeling broken

I was driving to work this morning, and my mind wandered to the place it usually does- thinking about John in some capacity.  Sometimes I think about things he did or said, or our life together, or how much I miss him, or I think about when he was sick....just kind of wherever my mind wanders.

Today I was thinking about how its been over a year since he first started complaining about his arm hurting and went to see the neurologist.  The whole year or so played out in my head, all the way to the point at which he died.  And while I know all of this is VERY real, a small voice in my head said in disbelief "There's no way that actually happened."  It all still feels like some very weird dream.  But nearly immediately after that passed through my mind, a bigger voice in my head immediately reminded me that OH YES, it had indeed happened and yes, my husband suffered for so long with a misdiagnosis and yes, once he was diagnosed it was too late (although we didn't know that at first...) and he did die and he isn't ever coming back.  Cue the waterworks and the feeling of my heart sinking in my chest.

I remember almost everything all too well...

Snippets of emotions before the diagnosis

These came from various posts or conversations on facebook or with friends. I wanted to save them for posterity. >>I wish I had more to say right now. It's just too hard. This was the only place I posted this last night, then cried myself to sleep. His case will go in front of tumor board tomorrow. The bad part is that even with treatment, this is severe enough that he will be lucky if he lives a couple of years. I am going to lose my husband, plain and simple. My children are going to lose their father. 'Not fair' doesn't even cover it. The only 'bright side' (ha!) is that we think we will have enough time to get things together. Take a Couple of trips w the kids, figure out how we will support ourselves after he is gone, spend a lot of time as a family, talk about a lot of things too morbid to write out right now. I'm just happy it won't be super sudden. >>everyone says 'you're so strong' to me but its funny bc I don't feel strong. I feel like a scared kid who doesn't know what the hell is gonna happen and what to do. And has to keep it together for other people. I miss my kids like crazy right now but I don't know how the fuck in supposed to keep it together. And work? How do you work when you breakdown all the time??? How does any person just keep going after these kinds of things, and we aren't even at the truly bad part right now. Life sure is fucking unfair. (Written while waiting on the path report on the longest day of my life, ever.) >>I'm so sick to my stomach waiting for this fucking pathology report. My MIL has been bugging our caseworker and pathology dept and they r working on it 'doing extra stains ' or something like that to confirm findings. I don't know that that means something bad but it FEELS bad. I am struggling like I haven't in DAYS with this. They are promising me a path report today. I NEED it- NOW. I don't care if they want to do extra work, obviously they know SOMETHING and I need to know. I took my Xanax a few minutes ago but I'm literally here, in the bathroom, so my crying doesn't wake up John and because I literally feel THAT sick. I do.not.know.how.to.cope.with.this. I feel like I'm dying slowly right now, like I can't get enough air, like I want to throw up everywhere and scream and cry and hit people and break things and throw a tantrum in the middle of the Neuro floor until someone gives me what I've been waiting almost a WEEK for. I miss my kids, it's been 9 days. I don't want my husband to die. I don't want him to be sick. I just want my boring, normal mediocre life back. (Also written while waiting on pathology, a few days before the above post) >>Waiting is just the worst part. Because everything in me wants to be negative and be all 'this shit is going to be malignant and BAD and I'm going to be a fucking 30 year old widow.' But then the rational part of my brain punches the emotional side and says 'NO. NO IT'S NOT. Everything you know and have read and have been told is that this probably is OK.' But the rational part of my brain also knows that with John's history and now this, that the chances of growing old with my husband are not great and that more issues stemming from his prior cancer are likely to take him away from me way before I'm ready. And take him from our kids. That is 1 billon times harder to deal with than thinking of ME being without him. And because the rational part of me is smart enough to know how likely it is that if its not this it'll probably be something else within 10 years, the emotional part of me is FREAKING the fuck out. Man I am good at holding it together for him (although you guys would've been embarrassed to know me in the ER @ LGMC when they said tumor. Y'all I swear I panicked like he had just died right then and there. Seriously, I'm kinda embarrassed of myself. Anyway I keep a good face for him and stay cheerful mostly and try to make him laugh and joke with me (I'm not always successful....y'all know John...I'd kill someone to have him spend ONE day laughing and being his stupid smartass self to me like he always is. Then I end up away from him and next thing you know I'm trying not to lose my shit or I just plain lose my shit.

Malignant

That title about says it all, right? All the hoping and wishing I could do or others did unfortunately did not help us. I've meant to copy some of my facebook status and convos here to have a record of how I was feeling all of these 12 excruciating days. John has a "Malignant Peripheral Nerve Sheath Tumor". Part of it is still in him. The neurosurgeons were able to remove the tumor in his spinal canal. We waited days for this report and then HOURS for the neurosurgeon to show up when I knew and had been promised a report by end of day. He showed up at 9 PM with a less than sympathetic description of what was going on. On the bright side, he is beginning to regain use of his body. Its amazing that he was normal less than 2 weeks ago and now cant do anything without help- sitting up in a chair, walking, etc. He can eat on his own- but not at first, I had to feed him for days while he laid flat- and brush his teeth, etc. But he cant shower, get out of bed...its scary, despite the progress he has made which has been VERY substatial. We finally were moved home today- John is in an inpatient rehab facility for PT/OT therapy daily, for an undertermined amount of time- and I'm so relieved that its hard to really describe the absolute crushing devastation of the diagnosis. The cancer is really really rare. The prognosis is not great. But we're still waiting to hear a LOT of things from a couple of hospitals regarding possible treatment so the best place for him is in rehab and the best thing if for him to get better enough to move around on his own so he can begin cancer treatment. I'll have to post more about how bad it was when I have more time. I try to stay positive for him but at least once a day I have a little breakdown on my own, away from John. Its catharthis, I guess.

The backstory

My husband spent most of the first quarter of the year having problems with his left arm. Eventually he was diagnosed with a pinched ulnar nerve. We decided he'd have surgery in October of this year (10/8 to be exact). The arm issue was unusual and particularly severe and he had a ulnar nerve transposition. This was a pretty major surgery, it involved cutting open the bicep to protect the ulnar nerve. We had also noticed back pain, which we attributed to the arm, for pretty much the whole year.

After the arm surgery, the back pain didnt really go away. Suddenly my husband was complaining he could not feel the muscles of his abdomen. He also was complaining of pain in his RIGHT arm. We assumed this was another pinched nerve. He began to walk a little funny. I assumed he was just trying to compensate for his arm by walking a little "off" to alleviate the pain. His neurologist marked that there were no issues with the feeling in his legs when my husband went in to complain about his abdomen being numb. This wasnt true- he was already beginning to have issues with leg weakness. That was on 10/25, I believe. Between 10/25-11/1, he fell in our home three times.

We went out trick or treating with out kids on 10/31. This was the last time my husband walked even remotely "normally".

Within two days I had convinced him that he MUST go to his neurologist on Monday, he agreed. By Saturday, he literally could not walk, I had to help him into the van and lift his legs inside. He and I spent almost 4 hours to be seen, a ridiculously long time. When we went back, we discussed his severe neck/back pain, inability to walk, etc. He told the Dr he had been diagnosed with Hodgkins in 2001 @ the age of 18. They decided to do a CT Scan and a couple of MRI's. I should note here that despite spending nearly 6 months being treated by a neurologist, and having surgery performed by an orthopedic surgeon, none of them EVER sent him for an XRAY, CT or MRI of his neck, back, or arm. Even when he went in and had a numb abdomen (clearly not a good sign). The ER dr assured me he would be in testing for quite a few hours for scans, so I went home to pack an overnight bag for my kids & drop it off with my Mother in Law. I also charged our phones, grabbed some snacks and headed back over after a couple of hours. He was still doing testing. I do remember the ER nurse coming to see me and telling me that "there were some abnormalities in one of the MRI's". I'll never know why he told me this- because he knew, and felt guilty....because he wanted me to be prepared...I just dont know. All I do remember was them bringing back my husband, and us both falling asleep for a short period of time, maybe an hour. Suddenly the ER Dr was back and said "We need to talk." My husband remarked "That doesnt sound good..." and the ER Dr replied "Its not. You have a tumor in your spinal canal. There is also a second tumor outside of the spine."

I remember putting my hands over my face and suddenly feeling like I was suffocating. The ER Dr kept talking...I dont even totally remember what he was saying. I just remember trying to breathe, feeling like I wanted to die, feeling like I would explode, feeling like I was in a nightmare that I was struggling to wake up from. I do remember him then saying "The tumor is compressing your spinal cord, that's the reason behind your paralysis. You'll have to be admitted right away. We'll send you either to Shreveport or New Orleans, because you'll need emergency surgery to take the pressure off the spinal cord before the paralysis gets worse or becomes permanent."

That is the moment I completely lost it. I became THAT woman in the ER- the one sobbing and screaming hysterically, gasping for air like a fish out of water. I remember the ER dr saying "I'll give you a minute" and walking out with the nurse. My husband called me over (he was crying as well, but silently) and I laid on his chest and wailed and wailed and wailed. I dont remember much after that except calling my mom around 4 am, and crying hysterically to her. I called my husband's mom also, who started crying on the phone. My mom was there at the ER within 20 mintes to meet me...I dont really remember what happened until she got therem which was me breaking down again. She had brought my aunt too...all my aunt could do was rub my back while my mom kept me from falling to the ground.

Knowing John's history with cancer, of course we assumed the worst- we always knew the chances he would get cancer again were higher than that of the average person. Never would I have imagined that the possible returning cancer in his spine. And as of this moment, we dont actually know the prognosis yet- benign or malignant. So far the consensus seems to be there is a good chance its benign, but that doesnt mean it is, nor does it mean no treatment even if it is benign. We simply DONT know what will happen yet. More posts on that soon. He was diagnosed in the early morning hours of 11/3/12, had risky microsurgery to remove the spinal canal tumor on 11/6/12 and here we have sat, @ LSU Shreveport ever since.

 Waiting to hear what is going on. Waiting to hear just how much our lives are going to change. Trying to find a new normal. Trying to keep our minds positive, even though its next to impossible.