It’s December 9th In My Alternate Universe

Yesterday marked 8 months since Ben died.  Eight.  Months.  After he was diagnosed with that-which-shall-not-be-named-because-I-hate-it-so, he survived 9 months and 5 days.  Eight months after he was diagnosed, it was December.  Eight months plus one day after he was diagnosed was December 9th, to be exact.  So today I figure that in a weird way it is the equivalent of December 9th of last year.  Can you understand my crazy?

This is how I think now.  At any given time, on any given day, if you could see inside my brain you would see me thinking either “on-this-day-last-year-we-were…”  OR “8 months and 1 day after Ben was diagnosed we were…(insert activity here.)”  So if you get my thinking, this day is kinda sorta December 9th, 2015, which is the day that Ben went in the hospital for his chordotomy.

Last November I wrote about Ben finally agreeing to see the Neurosurgeon about having a chordotomy, and I put this explanation in the blog post of what a chordotomy was.

“Cordotomy (or chordotomy) is a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain and temperature perception. This procedure is commonly performed on patients experiencing severe pain due to cancer or other diseases.”

Well, the truth is I edited that definition slightly, because Ben was still reading the blog and I knew that he would read my post.  So I lied and left out one shitty word.  This is the truthful definition of a chordotomy:

“Cordotomy (or chordotomy) is a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain and temperature perception. This procedure is commonly performed on patients experiencing severe pain due to cancer or other incurable diseases.”

Incurable.  See how I left that key word out? Yes, its true.  While technically there could be a few other reasons why someone may receive a chordotomy, the truth is that the only people who actually receive a chordotomy are those that are going to die and the doctors are trying to save them from spending their last weeks in agonizing pain.  When I wrote about the upcoming chordotomy in this post (click here), what I left out was that Ben was going to die.  And soon.  And the neurosurgeon was trying to find a way to get him out of pain as soon as possible, because Ben The Titan had put off the procedure for far too long.

So on this-kinda-sorta-day last year, Ben had a chordotomy.  And it worked.  But the problem is that The Titan waited so long that the damn cancer (small ‘c’) made a lot of progress while he was in the hospital.  By the time it was over Ben could no longer walk. We pretended that it was the chordotomy that had weakened his legs, but not for one second did I ever believe it.  Maybe it was because his body was in a further weakened state while in the hospital that allowed that disease to move so quickly, but there was never a doubt in my mind or the doctor’s minds what was happening.  You could practically see that fucking disease eating him up minute by minute.  The cancer had now essentially robbed him of his ability to walk, or at least the ability to walk as he had been before entering the hospital.  I was MAD.  I was so fucking angry … at Ben.  Yes, I was furious with him for having waited so long for that pain relieving procedure that he never even got to really enjoy the sweet relief of having no pain.  He didn’t have it in time to be able to enjoy some pain free time while still being able to walk in the days leading up to what the kids and I all knew was to be our last Christmas together.

If I’m going to be honest now (I should be, since I lied so much in this blog before Ben died) I would have to admit that I was so angry I wanted to scream at him.  I wanted to shake him hard and yell “WHY????  WHY?????  WHY DID YOU WAIT SO LONG??”   But I knew why.  He waited because he loved us, and he wanted to live.  He knew a chordotomy meant the end was coming.  So instead of screaming I left the room and cried for the unfairness of it all.  My poor, poor Ben who had just wanted to battle and fight so hard for the kids and I, instead had suffered such extreme agony and for what?  Abso-fucking-lutely nothing.  Nada.  Zip.

Two of Ben’s friends from Ontario stopped by the hospital while he was there. They were also very close friends with Chris Thomas, whom you may recall died two days after Ben. When they were leaving the hospital I walked them outside, and I told them that Ben was going to die.  Soon.  It was a sad, sad moment.

So that’s what I’m thinking about on this day that is kinda-sorta-December-9th-2015.

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My God, how I wish he had lived.

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Half A Road Trip In One Post

I’ve been absent for awhile, as you may or may not have noticed.  I suppose that depends on how (un) interested you may be in this blog.  In any case, the road trip with the girls was fun, as long as I pretended that Ben was back at home with Zak having a Boys Vacay.  A “Big Hairy Guy Weekend” as Ben always called them when Zak was young.  When I thought too hard about the fact that Zak was actually going to work every day (and also a bit lonely it seemed, from his messages) and that Ben was never coming home again, it got a bit too much to bear.

We arrived home after 16 days(ish) on the road feeling not too shabby, but when I walked back in our home I felt like my world collapsed around me all over again.  I was transported right back into the shit storm of pain I have been somehow tolerating since the day Ben cried out “I have cancer.”  (April 10, 2015 around 5:20 pm, to be exact.)  I’m not exactly sure why that happened to me.  Maybe because the renos that were supposed to be completed were not done, or maybe just because Ben did not greet me at the door.  I don’t know.  But in that split second that I walked through the door I truly felt like I just couldn’t stand the thought of trying to get through another moment on my own. The pain was raw and fresh and agonizing and unbearable.  I saw this and thought that it pretty much summed up how I felt:

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(As an aside, and since this was brought up recently, let me be very clear for all who read this blog that I write these posts when the mood hits me.  That mood is usually sad because (a) my husband died and (b) quite frankly there aren’t a lot of moments in my life where I feel like jumping for joy right now.  I hardly think that is a surprise.  This blog is my outlet for my grief, not a contemplation of my own death and most certainly not by my own hand.  If you choose to read it, please keep your imagination in check.  I am still reasonably sane, I’m just sad. Really, really fucking sad.  I’m also really, really fucking strong.)

Anyway…

For the last eleven days I have just been trying to cope and trying to keep on keepin’ on. Which brings me to today, and I have decided show the world (or my twelve readers) a little bit of what took place on our Peace-Pilgrimage-That-Didn’t-Bring-Ben-Back.  I’ll do most of it in pictures which will allow me to not have to be witty or clever (have I ever been witty or clever in this blog?) and which will ensure you don’t have to read endless amounts of my drivel.

One of the things we did was leave Ben’s mark wherever we went.  I want Ben to be remembered and I feel like anyone who didn’t know him would wish they did.  So I “shouted” out his name at every opportunity.  This is what that looked like:

If you click on each picture you can see where it was taken.  Not long after we arrived home, someone (I won’t say who) sent me this:

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I love that.  Thank you.

We tried to have as much fun as we could while we driving from place to place, so we stopped randomly and did things like this:

We stopped at the Tillamook Cheese Factory for a tour (who doesn’t want to tour a cheese factory?) and the girls convinced me that Ben would have bought them some fudge if he was there.  They were right, so we ate fudge.

We drove a bit further and found ourselves discombobulated when we saw a sign telling us that we were right back home.  We pulled over and took a picture:

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From there we went on to the Sea Lion Caves (the pictures down below in the caves didn’t turn out) and then onward to take a wild ride in the sand dunes.  I thought we may die out in mountains of sand, but luckily we made it back safely. The three of us were washing sand out of unmentionable places for days:

Sometimes we just pulled over to look at the scenery as we drove south…

And then finally we arrived …

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We saw the Redwood Forest (we opted out of actually driving through the tree ourselves because there was a 30 minute wait) and drove on to San Francisco where we hit all the local tourist traps including Lombard Street (most crooked street in the world) where Jaime took a time lapse video as we drove down.  Unfortunately I can’t quite figure out how to post it, but you can see it on my Facebook page.  We did have a bit of a scene at the top of the street when some street security tried to make me drive down it without Jaime. Seriously?  That didn’t end up well …. for them.  Jaime ended up back in the car and on we went.  Click on each picture for details on where we were …

While we were in San Francisco we found ourselves driving behind none other than the Titan himself.  Look closely, bottom left …

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We also discovered the wonderful world of Uber drivers because I absolutely hated driving in that city.  I was pretty pleased with myself for using Uber, actually.  That isn’t something I would have ever done before without Ben.

I’m going to end this post here and finish the trip off in a second post at a later date.  I’m exhausted and today we brought this fella on the left to his forever home with us:

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His name is Marley.  Not directly named after the movie per se,  but we did name him after Bob Marley.  Ben would have loved that.

Before I sign off I want to skip ahead and show you this one thing:

The picture on the left is Ben and I on the Santa Monica Pier, Sept 24, 2015.  Our 21st anniversary.  The picture on the right is the girls and I standing in the exact same spot.  It was strange to think of all that has transpired in such a short time.

And then there was this:

I took the picture on the left when I was standing beside Ben last year, and I remember thinking at the time how ironic the sign was because the end of our trail was approaching rapidly, and I knew it. When I saw the girls standing beside the same sign 11 months later I realized that in fact it was not the end of the entire trail, just the end of part of it.

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Ben sat in that chair last year.  This year we left it empty.

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What About The Kids?

I thought that with time passing, things would get easier.  That appears to not be true. What actually seems to be happening is just the opposite, in fact.

The girls are struggling.  I’m not going to go into specifics, but they are suffering badly.  I don’t know how to help them.  I can barely help myself.  I am not without resources and I am definitely trying, but it is so hard.  We all feel like we are barely keeping our heads above water.

I also worry about Zak, although honestly he seems to be doing fine.  He has a lot of support and Zak, much like sweet Ben, has always had a knack for deciding whether or not he can actually fix or change something.  If not, he focuses on what he can do.

Zak and I went on a date the other night, because he is leaving for Powell River for three weeks.  We had a nice time, but when I mentioned Ben his face clouded over.  He told me he tries not to think about it too much – about losing his Dad.  I can’t decide if that is a good coping mechanism or one that will come back to haunt him later.  I’m probably not the best person to figure that out.

As I write this, it is 9:55 am.  Jaime has been texting me since 8am, begging me to come pick her up from school.  Her stomach hurts her a lot.  Constantly.  It is pretty apparent that her grief is coming out in physical pain, but knowing that doesn’t make the pain any less real.  The pattern seems to be that I try to walk her through it in various ways via text. Sometimes it works. Often it doesn’t.  Today falls into the “doesn’t” category.  I am going to have to go pick her up.

PS.  I picked up the mail today and found that my new cheques had arrived.  In my name only.  With my new account number.  In my name only.  I haven’t had my own bank account since I was 22, and I don’t really want it.

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Advice From My Shrink

Last night I paid a somewhat regular visit to my favorite psychologist. I find it comforting that he knew Ben and can carry on a personal conversation about him. Plus, he is as blown away as I am that Ben is gone. I like that. A little solidarity. And he doesn’t pretend that he can bring Ben back, although I do confess to holding my breath a little each visit, just incase he shouts “Surprise! I found a way!” and then Ben pops out to say it was all a bad joke.

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I also like my shrink because he’s not afraid to say “fuck.” Or “fuck off”. Which is sort of / kind of / a little bit what this post is about, only in a much kinder and gentler way.

F**k

Let me begin by explaining to anyone who doesn’t already know this about me, that I am a very “guilty” person. That’s who I am. I feel guilty about everything. I spend my life wondering “Did I thank this person, or apologize to that person? Did I show an appropriate amount of gratitude? Did I offend someone by laughing too hard? Did I make someone feel too badly about my situation when I stopped in my tracks and sobbed uncontrollably for 30 seconds, gasping for breath? Am I grieving too much? Am I not grieving enough?” Right this minute I am more concerned about who may read this post and think that I am writing about them in particular, then I am with trying to just spit out what I want to say. (Also, side note, I wonder if mental health professionals are offended by the word “shrink”.   Now I’m worried that my shrink may google Ben, read this blog, and take offence to that word.)

In order to clear my conscience and not have to worry about what everyone is thinking, please know that I am not talking about you in particular, in this post. Whoever may be reading my musings, this is not about you. This post is all about ME. I won’t be offended if you don’t read it, as long as you aren’t offended by what I have to say. Deal? If you think you may be offended, stop reading now. Do me that favor, because I can’t handle the guilt of worrying about it.

Guilt

Back to the visit to the shrink. He let me know right off the bat that I didn’t look good. Nothing like diving right into it. I wasn’t feeling good, so I wasn’t really surprised that I didn’t look good. Here’s what I told him:

I feel like people think I should be over it, or at least moving on. I feel pressured to grieve in a way that others think I should. I feel that people think I should be going out to do things that they think I should be doing, instead of hiding in bed on occasion like I sometimes want.

I feel like I should do what others think I should do, because everyone has given me so much over the last year that I owe it to everyone. And I do. I do owe everyone. I could never ever repay so many people for all they have done for me. Maybe someday I will have the opportunity to give back, but right now I have neither the ability nor the desire. I cannot. I just can’t.

Sometimes I have brief moments where I forget what has happened, that my whole world has imploded, and I find I can talk about normal things. Most of the time I just want to talk about Ben. I like to look at his pictures and watch the video clips and just remember him. I like hearing other people talk about him. It reminds me that others loved him too.

Every day I can hear Ben’s voice break telling me how scared he is, and how he doesn’t want to die. It hurts me so badly that I just want to crawl into bed and try to remember how to breathe. That’s all I want to do. Not every moment of every day, but sometimes. And I know that I am loved and that those who love me want to try to help me with that pain. I know that people don’t want me to have to feel it. But I want to. Please let me feel it.

The pain is getting worse for me. I told my shrink that I probably could have gone back to work the day after Ben died and coped. I was numb. I was relieved that he wasn’t in pain any longer, I was so very busy, and there were always people around. But now things have slowed and people have gone back to their lives, and I hurt so badly that my stomach actually cramps up with pain. But here’s the kicker … I want to feel that pain because I do not want to get over this right now. I don’t want to forget. I want to feel everything. If I stop feeling it so much, it means time is passing and taking me further and further away from him. I don’t want to be further away from him.

I still spend a portion of my time every day trying to figure out how to bring him back. I’m not losing my mind. I know he’s gone and that it’s not possible to bring him back, but then I pause for just a moment and I have a fleeting thought of “what if? What if I just do this, or what if I just do that, and maybe he’ll be back?” I don’t enjoy those thoughts and I would rather just have the pain, but I can’t stop them. What if? What if? What if? That’s how I lived for ten months … saying these words out loud to those who could handle it, “Ben is going to die. He will not survive this.” But in my head I thought “What if? What if? What if?”

I have nightmares I don’t remember. Last night I had some type of night terror that caused Jaime to fly out of bed screaming “What?! What?!” I was yelling and asking if everyone was ok. I don’t remember why.

My body aches. I physically hurt. I have some swollen lymph nodes for unexplainable reasons in uncomfortable places.  I’ve been sick twice since Ben died and my latest bout with bronchitis was almost over when Jaime and I (along with two friends) stumbled upon a house fire. I breathed in black smoke while I was inside and now my cough is back. (everyone lived, dog died.) My throat feels like it has a lump in it. My hypochondria is back with a vengeance. I know that logically my throat hurts because I’m sick and because I inhaled smoke, but my mind whispers “cancer … cancer … cancer…”

Back to the whole point of this post. I cannot grieve in the way that others want me to. I know that seeing my pain causes pain for people who love me, and I know that it would be easier on everyone else if I could cope in the way that makes them most comfortable. But as my shrink said, “No one is living this with me.” I’m all on my own for this one. Everyone has to let me feel it.

I know that everything that people do and say is done and said with the absolute best of intentions. I know that no one wants to offend me or hurt me, and I know that it is human nature to want to help me hurry through this so that I won’t be in so much pain. But you can’t.  Please …. you can’t hurry me through this. I do not want to go about life as normal. I want to be allowed to grieve in my own way, even if it doesn’t seem “healthy” to someone or even if it’s not the way they think they would grieve in the same situation.

I don’t want my pain compared to anyone else’s. Its not a competition and I guarantee it’s not the same. Not better, or worse, but just not the same. It’s just mine. And sometimes if I want to isolate myself, let me, because otherwise I will be bitchy and unkind, and worse then hurting someone’s feelings will be the guilt that I will have to live with for doing that because that is who I am. Guilty. I don’t want that right now.

This was my shrink’s advice. “Tell people what it is that is actually helpful to you, as opposed to the things that they think are helpful for you.” So here goes:

If you want to help me, please let me talk about Ben or not talk at all if I don’t feel like it. Please watch my video clips when I play them for you, and pretend that you like watching my husband as much as I do.

If you work for the same company as I do, I’d be super thrilled if I could hand you a pile of receipts along with a letter of instruction and have you complete all the shitty paperwork that needs doing in order to claim back a whole bunch of expenses to do with the funeral. I’d also be super thrilled if you could claim the kid’s medical expenses that I haven’t dealt with yet. And while you’re at it, perhaps you could review and organize Ben’s medical records and complete a pile of paperwork for Veterans Affairs. This is a huge priority with a deadline and for some reason I cannot bring myself to do it. I have to have it finished by Monday. I haven’t yet begun. I kind of want to vomit at the thought of it.

If you want to go buy a wall mount for my upstairs tv (with my money) and hook it up for me, that’d be great. Same with a phone handset that would allow me to plug it in at home so that when my cell phone rings, it automatically rings on the “home phone” that isn’t really a home phone. Apparently there is such a thing and I want it so I can cancel my home phone but not have to worry about missing the kids if they call while I sleep. (Sleep.  Ha!  As if there is such a thing.)

If you want to organize my filing cabinet all by yourself without me having to make small talk – awesome. If you want to research and arrange family counseling and / or group counselling that’s suitable for teens through the White Rock Hospice, that would also be great. Langley Hospice is my second choice.

If you are good with tools and can drill holes and screw a bunch of handles onto a cheap, shitty set of drawers from Jysk – fantastic. If you feel like researching where to repair a broken door on a really expensive delonghi rialto coffee maker – awesome. That fucking coffee maker is the bane of my existence. But Ben loved it.  So I want to fix it.  And also I would like coffee.

If you are experienced with buying cars and are able to research good vehicles on Craigslist with Jaime (under $5000, low mileage) and then go check them out and test drive them with her, that would be amazing.  Maybe even take her to complete the paperwork and get the insurance.  Ben would have done that. Now I need someone to step in for him.

Those are things I really need. And I need to not have to feel like I must make coffee and chat or entertain while they’re being done, if I’m not in the mood. I just need them done.

I totally understand if no one wants to do them – I don’t really expect people to do those type of things. Everyone has their own life and their own things to do and I get that. But if you want to help me, then those are the things I really need. And if I’m doing them myself, then those are the things that I will be burying myself in for the next several weeks. Let me.  I’ll see you when I’m done.

I know they’re not the type of things that people think I should need. I know that people think I need to be distracted, and to go out, and to find ways to take my mind off of things. But that is not what I want or need. I want to feel the pain from losing Ben. I need to feel the pain of my children when they cry. I don’t want to push it all aside, only to have it come back later. Right now I want to be consumed with the agony that I feel from losing Ben.

So please, allow me to feel my pain. I know its hard to do that, and I appreciate that people want to spare me pain if they can, but I need to feel my pain. If you want to help, any of those things I mentioned would be helpful. And please, understand when I disappear or when I am silent. I think it is ok for me to do that for awhile. If I find myself sinking to a place where I can’t climb out, I promise I will let my shrink know or I will reach out for help.

On the advice of my shrink, that is what I need.  And I also need for  NO ONE to ask me if this post is about them, or if you’ve done something wrong.  It’s not about you.  You haven’t done anything wrong.

On a completely different and utterly random note, I would like to let all you ladies know that wearing men’s lululemon underwear is extremely comfortable. I’m glad I didn’t throw them out with the rest of Ben’s undies. Also, Zak has pre registered for Kwantlen in the Business / Marketing program AND he will be celebrating two years of sobriety on April 6th. Yay Zak.

 

I’m A Little Angry, TBH

I think I may have mentioned my hypochondria before.  (That’s a joke.  Of course I have. If you don’t know I’m a hypochondriac then you really don’t know me at all.)  In any case, my stomach started hurting two days ago and hasn’t stopped since.  Last night, as I sat alone colouring this (for meditative purposes, of course) …

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… I started feeling nauseous on top of everything else.  Which started me thinking I was dying.  Which made me wonder how my kids would cope if they lost both of us.  I mean, who ever thought I would be a widow at 45?  Who ever thought my kids would be “those kids” who lost their Dad as teenagers?  Shit happens, apparently, and it appears as though there’s not a damn thing I can do to stop it.  So who can possibly know what life will be like next year, or even three months from now.  It seems to be out of my control.

I made it up to my bedroom where Jaime was in my bed after crying herself to sleep for the 17th night in a row, and I lay down next to her trying not to throw up.  You know that horrible, horrible feeling you get when your body can’t decide whether or not to purge itself?  Thats where I was.  For hours.  And my stomach ached.  And thats when it really hit me.  Ben is gone.

Ben is really gone.  He’s not teaching a course in Ottawa.  He’s not at work.  He’s really dead and apparently, he’s not coming back.  Even though he was strong, and determined, and didn’t want to leave us.  Even though he cried and said “I don’t want to die.”  Even though he wrote emails with such optimism and determination, that I have had to delete because I can’t bear reading about how optimistic he was and knowing what the end result was.  Even though he fought so hard and tried to do everything right.  He’s still dead.  And I couldn’t save him.  And he suffered horribly for so long.  And now I’m alone, which wouldn’t be so bad if I had been married to an asshole.  But I wasn’t.  I had Ben. The best of the best.

So now when I feel nauseous and want to throw up, there is no one to rub my back and tell me “Just breathe.”  And when I’m scared I have something seriously wrong with me, which is always, there is no one to tell me “You are fine.  There is nothing wrong.  I promise.”  Its just me, wondering why my stomach aches and wondering how I will survive.  Wondering why I should survive when Ben deserved to survive so much more then anyone, and I didn’t save him.  Because I feel like he would have saved me.  He would have found a way where I did not.

And then I discovered that I am also angry at him.  I’m so pissed that he didn’t tell me how to do our banking, or whether or not I should keep the truck that he loved so much, or what I should do when I feel like vomiting and he’s not there to rub my back and tell me it will be ok?  I’m mad that he didn’t tell me how to cope with Jaime when she sobs herself to sleep every night.  I’m mad that he didn’t tell me what to say to Raegan who won’t allow his ashes to be anywhere she can see them, and who doesn’t want to see his photograph, and who will not discuss him at all nor will she shed one tear.  I’m mad that he didn’t tell me what to say to Zak who is just moving on, status quo.  Tricking me into thinking he’s ok but I know that his day will come, and of course the risk of him falling back into addiction is ever present in my mind.

I’m mad that Ben didn’t have an honest discussion with his own father about the emotional pain he carried from that relationship, and left me to have to cope with the fallout from that all by myself.  And the fallout has been horrible and mean and cruel at the worst time of my life when nothing is ok in my world.  And Ben would be so mad, but he’s not here to deal with it.  Just me.

I’m just angry.  And that makes me even sadder.

Last night I had a dream that I was at his funeral all over again.  I’m mad I have to re live that in my nightmares.  I’m just so mad that he died.  I’m so mad that he left me.  And I feel so guilty for being angry at the gentlest man on earth.  I’m mad that I’m not a stronger person, like he was.

Nancy came over and let me cry for a long time.  And then Mario and Julie arrived.

But Ben is never coming back.

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Almost Had Some Down Time…

I thought we may actually escape with an uneventful week, but apparently that was not to be.

I believe I glossed over the worst parts in my last post, including the fact that Ben struggles to walk.  This is something that came on in the hospital but we assumed it would pass.  It has not, and seems to have gotten worse.  He also continues to be exhausted and thoroughly drained of all energy.  This is a cruel disease.

Saturday night seemed fairly tame, however, and Ben was sleeping when I left to pick Jaime up from work.  She literally called for a pick up about 30 seconds after I had just taken a sleeping pill, so I madly dashed off to get her before the effect of the pill hit me.  Jaime was happy and we chatted on the way home, and I went right off to sleep.

I’m still not exactly sure what happened, but a case of the “sads” obviously hit Jaime as soon as I fell asleep, and I was awoken by her crying by our bed.  I had no sooner made room for her in between us when the worst pain imaginable struck Ben.  I can’t even describe it – it was worse then anything that I have mentioned before.  And believe me, there has been some bad pain.

This time it had nothing to do with his right side.  The cordotomy was a success and he cannot feel pain on the right.  This was all in his sacrum and it lasted for about 8 hours.  It definitely warranted a trip to the hospital but I could not bring myself to force him back there when he had just made it home.  And so we all cried, all night, until finally it passed and Ben fell asleep and slept for the entire day.  Sweet relief for him.

On Sunday Dad and Kirby moved the recliner upstairs to our bedroom for Ben, so that he has the option of the chair or bed and the bathroom is there too.  I bought a second recliner on Monday (to be delivered tomorrow) to be put in the family room, so that Ben also has a place to sit downstairs when we have to go for appointments and he needs a break before going back upstairs.  Mainly his “suite” is now our bedroom, and we have set it up with two extra chairs for guests.  Its a bit strange, having visitors in our bedroom, but it works out better for Ben.  Connie and Kirby came by for a visit last night and I’m sure the neighbourhood would be abuzz with gossip if they knew that another couple joined us in our bedroom with wine.  Lol.  I didn’t take pictures.  Haha.

Today we went back to VGH to meet with the doctor at the pain clinic.  We had to take the wheelchair, which Ben hates.  To make a long story short, the doctor is ordering an urgent MRI tomorrow to see if this effin’ disease has crept into Ben’s spine and is causing his weakness.  There was more discussion of radiation and blah blah blah.  After awhile we both want to scream “STOP!”  How much more is Ben supposed to endure?

Our drive home was, well, sad.  We talked about the possibility of the worst outcome, and how to talk to the kids.  And how it sucks that this is happening at Christmas, or at all.  And we cried.  And cried.  And cried some more.  And then we laughed a bit and picked up sushi (for Ben, not me.  I think its gross.)

We went home and Mom and Dad came over and joined Ben and Raegan for the evening while I went off to spill my guts to the psychologist and hope that this time he might have figured out a way to solve this problem. He hasn’t.  But the four of them enjoyed themselves while I was gone – talking and laughing until Ben fell asleep again.

That is where we stand for now, waiting for another MRI that Ben will have to endure (he is extremely claustrophobic) and more potentially devastating news.  In the meantime I am going to go and crawl into bed with My Love and snuggle him tightly, and hopefully dream about better days.

Wendy xo

Cordotomy Coming…

I finally have the brief opportunity to let everyone know what our week looks like before it actually happens.  Having said that, our best laid plans always seem to get thrown off, but it currently appears as though the plan looks like this:

Tuesday Dec 8 early morning – Ben will go for a chest xray and see the Respirologist in the morning for a follow up regarding his lungs.

Tuesday Dec 8 late morning – Ben will go to VGH to be admitted

Wednesday Dec 9 – Dr H will perform the cordotomy, which will go swimmingly well with zero complications and Ben will be pain free

Thursday Dec 10 – Ben will be released from hospital and will jog out to the parking lot while I struggle to keep up with his pain-free jaunt

Thursday Dec 10 – Ben currently has an oncology appointment and blood work scheduled for the morning in Burnaby.  He won’t be able to make this appointment so it is my plan to beg them to change it to the afternoon.  Fingers crossed.

Friday Dec 11 afternoon – second treatment of Nivolumab

Saturday Dec 12 – rest, recover, and revel in Ben’s lack of pain while the Nivolumab continues to course through his veins and heal his body.

Sunday Dec 13 – spend an hour in church appreciating what we do have, and thanking God for all our doctors, our family, our friends, the constant demonstrations of love, and all we have been blessed with in our time of need.

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Gotta love Zak’s morning ‘Elvis’ hair

Thank you, everyone. xo  This is for all of you:

Sending-Virtual-Hug-dc-77008