Anniversary

Today would’ve been my 9th wedding anniversary with John.

Heartbroken doesn’t even begin to cover how I feel today. I miss him so much, I grieve for him heavily and I grieve for our children, who miss him but have no real clue on all that they are missing out without their father, knowing one day it will really hit them what it meant to lose their amazingly loving father at such young ages.

I’d give anything for a few minutes to just look at his face, or talk to him.

My poor John, how I wish you were still with us…more than anyone will ever know.

(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.  

24 weeks

Yesterday made 24 weeks since John passed away. In 12 days it will be the actual ‘6 month’ anniversary of John passing away. Funny how that week/month thing works. Both days are significant, either way.

I spent the day very busy with school registration for our kids, but I was not remiss to be acutely aware of what the day was. Being so busy helped it not be as hard of a day as I expected it might me but it still was sad. I had to, of course, talk about it during registration when you’re confirming the parent information. Luckily for me (insert sarcasm here…) the lady helping me was also a school counselor in our district, so she started to asking me how I was doing, telling me how sorry she was, etc. I always appreciate the sentiment, of course, but  I probably would’ve preferred the type of people who just say ‘I’m sorry for your loss’ and left it at that. One lady even started asking me questions, like ‘what did he die of?’ I kept answers brief to discourage her from too many questions.

Thankfully it worked.

I re-live what happened enough on my own, thank you…I surely don’t want to give in depth details to total strangers.

And although I was always the parent who handled registration for the kids, it made me think of how hard the first days of school will be this year. John didn’t always make it out to the first day itself bc of work, but if he didn’t he made sure to go to the meet the teacher/open house events in the days following. Now I’ll be handling all that myself. My mom probably will come to help but it isn’t the same. It’s not John, and its not us with our kids.

It sucks.  That is an understatement.

Lots of things are like that now…events, parties, things for family/the kids, holidays. They all serve as additional reminders as to what I’ve lost and who isn’t here.

It would be nice to celebrate something or have some event or activity pass without it ALSO being some painful reminder as to what happened.

Maybe one day it won’t always be like that.

His voice & the forgotten video

I came across a video from my phone of the day John came home with hospice (in December, just days before Christmas) when the kids came home from school and realized he was home and got to see him AT home for the first time in nearly 2 months. They had seen him in the hospital a handful of times once he was transferred back to our city but he hadn't been home since the diagnosis.  It had been some 50-odd days or so since he had returned to our home.

Maybe one day...

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."

Eleanor Roosevelt

Things a 6 year old boy should not have to ask.

Jack came to sit with me & then asked me when John's birthday is. I replied to him, telling him the date (its a few months away).

Then he asks 'Can we celebrate daddy's birthday, even though he died? That's ok right?'

There's someone missing...

I took a picture with the kids yesterday for Easter.  It hurts my heart to take "family" pictures without John.  Its like there is always someone missing from the picture.  I can pretty much just see him right in there, where he should be- next to me.  But there is no John there.  There will never be John there again.  I hate that, its not right.  But I dont want to not have group pictures for occasions, so we took one anyway. 

You think you know, but you have no idea...

“Mostly it is loss which teaches us about the worth of things.” - Arthur Schopenhauer

A friend shared this quote with me semi recently.

And isn't it so true?  Maybe you read it and think "Yeah, I know that feeling." And maybe you do, but I am betting a lot of people who think that- unless they have suffered some of the "earth shattering" forms of loss that would really give you perspective on what that quote really MEANS.  (And if you do know that kind of loss...I am so so sorry for you.)

Maybe you are luckily blissfully unaware of how true this statement can be in a person's life, maybe you've never experienced that kind of loss- that isn't really the point here.

The last video I have of John

This is the last video clip I have with John in it.  The kids got an air hockey table at Christmas and John hadnt gotten to play it with them.  One day a couple of weeks after Christmas while in his wheelchair we were able to position him in a way to play a few rounds with our youngest son.  As you can tell, our youngest was very proud to score a point on his dad ;) 

You can see John's arms/hands were beginning to give him trouble (as in he was losing control of them- we knew that would happen from the tumor, per the Dr's, but that did not make it any easier when we began to see it happening).  That really was the turning point for him- his arms began to go out, then within a rapid period of time basically did not work at all.  Within a couple of weeks of the onset of this he had passed.

Even with difficulty controlling his arms/hands and barely able to hold the air hockey mallet, he still played a couple of rounds of air hockey with our boy. I will always cherish these little videos I have of him, especially this one while he was sick and could barely control his arms/hands, but still did what our kid wanted him to do- spend time playing with him.  That's just part of why he was such a great dad- he'd do nearly anything for the kids, even if it was something that he had to struggle to do.  It broke his heart when he lost the use of his arms completely for lots of reasons, but mainly bc it left him much less able to interact with the kids or play with them.  It broke my heart for the same reason, and also because it left him so defeated.  We also knew that the loss of his arms meant that he would likely go downhill somewhat quickly...I didnt think it would be as quick as it was, and I'll never know if the infection caused him to pass, or if it was in fact the tumor, but either way, it was WAY too fast- much less time than we had hoped for when we began this nightmare, but also way less time than we expected once we were told there was nothing anyone could do for him.

A couple of the last pictures I have of John

I actually have a few newer than this but he is sick (in the hospital during the 4 days before his passing) in them, so I felt like posting the last GOOD ones we had here for the good memories.

This one is from 9 days before he passed, on our son's birthday.  We have a family party @ the house for the kids on their birthday and bigger party later.  J was feeling well enough to get up into his wheelchair to help us celebrate that day.  He was a great dad- even if he hadnt felt well enough he probably still wouldve gotten into that wheelchair because of our son's birthday.

Then this picture was from the 26th- 5 days before he passed and a day before he went into the hospital with the infection.  He spent 4 days in the hospital and came home on the 30th, then passed on the 31st.

This is also a couple of the last pictures of us together.  The first is when I had crawled into his hospital bed (in our room- he was home with hospitce) to cuddle with him for one of the last times and we had both fallen asleep.  Being able to sleep in the same bed was something that was few and far between once he was diagnosed.  Hospital beds arent exactly built for two, plus when J was hurting or needed to be rolled a certain way or had all of his equipment in bed it was impossible to get in there.  I loved the few times I was able to do it. 

The second is one of us being goofy one night in our bedroom.  We moved all the furniture around in our room to make sure his hospice bed could be close to me and in our bedroom so I could take care of him at any time he needed. We spent time at night watching movies and just enjoying each other, or sometimes grieving and crying and comforting each other.  The happier times were always better, it was hard to see him upset and John hated seeing me upset.

Both of these were from a couple of weeks (maybe 2-3 weeks) before his passing.

 

A journey of a thousand miles begins with a single step

Today my single step is that I managed to go to work, every day, for a full week. 

And so it ends...

I have to share the awful news...

When nothing feels "right" anymore...

I hate how nothing ever feels right anymore. Literally, everything feels wrong. I spend so much time wondering how long I will feel like this- if I always will feel like this.

Christmas

While Christmas was great for the kids- their dad got to come home, they received all they wanted & more (people were VERY generous to us with Christmas because of John's illness. I had to buy and wrap almost nothing. I am immensely grateful for that.) and had good times with family- it was literally the LAST thing I wanted to do.

All this time, all this effort...wasted

I've had it cross my mind a million times to come back here to writing but it was always too hard. The last time I wrote was for our anniversary- now its after the New Year. Its always too hard to write but then I tell myself I *SHOULD* do it, I'll want to read back on this one day. I dont know when, but I'm sure I will. Or maybe my kids will want to when they are old enough one day. I had written last time that 8 years with my husband is not enough. Now I know that 8 years with him is almost certainly all I will get.

Its like a big, cancerous lima bean

So this is John's tumor. Or, actually, its PART of John's tumor. My brains stops listening every time a Dr has to come in to tell me bad news (which has been way, way too many times in the last 12 days- and I'm sure I should expect more once we start oncology consultations) and I end up missing a lot of what they're saying. Luckily I have copies of all the reports. Anyway- in John's back, this bundle of nerves has a "Malignant Peripheral Neural Sheath Tumor". It is (was) sort of "dumbell" shaped because what it did was grow through some area and into the spinal canal (I'm not a medical expert so I dont know the exact terms...sorry, people.) and then it grew and grew in that canal and compressed the spinal cord until John couldnt control his own body. And thats where we are now. Well, we are now short the piece of the "dumbell" that was in the spinal canal. And John is doing 3-5 hrs a day of therapy so he can learn to even do something like WALK TO A CHAIR and sit in it. Its amazing how life can change in a second. Amazing and sometimes really crappy. The real kicker is- this tumor? Its an effect from the radiation John received when he had Hodgkins lymphoma in 2001 when he was 18. He spent something like 6-9 months having chemo and being radiated from his chin to his abdomen. We always "knew" that a secondary cancer was possible. We never really THOUGHT it would happen. They always said it would be something like lung or bone cancer IF you got a secondary cancer. No one ever mentioned a tumor in your spine. We never thought to be aware of that. We never thought to have it checked out. I wont get into the fact that not one, but TWO Dr's missed this and that it was only found because he no longer could walk. If we had known about this a week or so earlier, when he complained about worsening numbess in his body to his dr, he might not be essentially paralyzed right now. Obviously I cant say that with 100% certainty but the man could walk when he went to that Dr appt. So what saved my husband's life 12 years ago- radiation of his lymph nodes- is now going to kill him. We dont yet know when, we dont know much of anything. I have the reports but it takes me days to get brave enough to come to terms with all of this news we keep getting. I finally was able to look @ the MRI's and see the spinal canal tumor. It took me a day to read his pathology report. I have not yet gotten the fortitude to read the operating report or MRI report from the stay at this hospital. I read the one from the ER- the people who found the tumor- the day after we got the news, after I finished sleeping for something like 9 hours in what I can only assume was my body's attempt to just NOT deal with reality. Can you blame me?? As of now- the spinal tumor is gone, we've been moved back home after 9 days in Shreveport, LA (their neursurgery team was the best to handle John's rare type of tumor, surgery wise) and John is now in an inpatient rehab facility just about a mile from our home. So far he can sit up in a chair for about 1/2 an hour, and stand with a walker and take a few side steps. Its so hard to see my big, strong husband unable to do anything with his body. He is frustrated too. Its exhausting to put on the "happy face" that I have to use 75% of the day. I'm worried how hard it will be once the kids come home tomorrow. Not the parenting part, I've got that...I just dont want to cry in front of them, worry them. Right now they mostly dont know anything except that John had surgery. John had also had surgery on his arm about 6 weeks ago that wasnt that big of a deal (well, it was a serious surgery, but it was not life threatening and he healed well) so they thing this is similar. I'm worried how they will react to seeing him tomorrow...they'll be happy, ecstatic...but maybe scared if they think he looks sick. I'm glad he will be wearing regular clothes in the rehab hospital, and not those gowns. But I'm worried they will see how little he can move (less than when they last saw him) and get scared. I'm crossing my fingers its a good visit.