Bam! Pow!

The other day I had to pay a visit to a travel clinic for immunizations.   (Good news … I now have lifetime protection against yellow fever.)  I’ve never needed a travel clinic before, so when I made the appointment I discovered that the clinic happened to be in the same building as the office of a specialist I see every year.  I didn’t give it any other thought except to appreciate that I knew where the office was, which was a relief because I am geographically challenged and often have trouble navigating from Point A to Point B.  It was always Ben’s job to get us where we were going.

I arrived on time for my immunizations (a miracle), had four needles jammed in my arm and then walked out of the building whistling a jaunty tune as I made my way back to my car. (OK … I can’t whistle, but you get the picture.  Everything was fine in my life at that particular moment.)

But as I crossed the parking lot a memory suddenly jumped out of nowhere and hit me like a ton of bricks.  It literally stopped me in my tracks.

It wasn’t so much the exact memory in the video that punched me in the face, but rather it was the memory of what came immediately after I filmed Ben that day.

Just a few brief moments after Ben declared himself “The Shit,” the two of us walked into room 302 where we were promptly informed that in fact the cancer had indeed moved into Ben’s bones and spread to his lungs.

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Ben wrote about that visit in this blog post.  As always, he downplayed the news and forged ahead.

I do not remember leaving the office that day on April 22nd, 2015, but I do remember what happened immediately afterwards.  I remember turning the key in the ignition and thinking about how odd it was to just hear news like that and then drive home as though it were just another day.  I remember beginning to drive out of the parking space when Ben suddenly burst into tears.  He sobbed. His whole body shook. He was scared and he was caught off guard by his own emotion.

I remember feeling momentarily confused.  Ben didn’t get scared.  Ben was The Titan.  Ben handled things.  Ben coped.  Ben made lemonade out of lemons.  Ben always knew what to do.  Ben led the way.  But now My Ben was scared and oh my God how it hurt to watch.  It physically hurt me like a knife being jammed into my stomach and then savagely turned sideways before being yanked back out, like you might see in the movies.

Back to 2017.  As I walked out of the travel immunization office I made a discovery. I discovered that without even thinking about it or knowing it’s coming, I can still physically feel the pain of moments like that.  I don’t even have to be consciously thinking of a memory….it can just come barging in through my thoughts uninvited, whether I want it to or not.  In that moment I felt exactly the same as I felt 22 months ago as I watched Ben sob.  I did not just recall how I felt. I felt it all over again.  It hurt so badly that my knees shook as I tried to climb back into the same vehicle, in the same parking lot,  without My Ben.  And I wondered again, for the zillionth time, “How can this be?”

On April 22, 2015 as I watched Ben shake and cry, I felt helpless.  I felt scared.  I felt that there was no way to comfort him because no matter what I said or did it wasn’t going to change a thing.  Ben would never know how our story would play out over the years.  Ben was going to die.

On January 25, 2017, I managed to force myself to stay standing, climb into the car and take a few deep breaths.  And then I cried.

As I drove home I was acutely aware of all those people out there with PTSD who talk about how much their nightmares hurt them.  How much it affects their lives because the pain is as real today as it was in the actual moment.

Now I know.

I’ve Had Better Days, For Sure

This is a tough day for me.  Last year on this day I wrote this post:  Weeks?

Last year on this day, the Saint-Onge Five and the ever present Barb sat in a room together while we were told that the miracle drug did not appear to be working, and that if it wasn’t working then Ben had three weeks to live.  Three weeks.  Ever think about what you would do if you were told you had three weeks to live?

We did this, because what else was there to do?

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He held my hand.  The kids sat in the back and if memory serves, none of us spoke.  What is there to say when you are given news like that?  Turns out, as I’ve mentioned, that no matter how much you say, you will never say enough.

So today I find myself angry.  A few things of late have set me off as Christmas approaches, aside from the fact that I have to stare at Ben’s ashes instead of his face. Writing about specifics won’t make me feel better.  (Chalk one up for Ben who used to tell me that vomiting angry feelings wrapped up in the word “venting” does not make things better. He would say “Venting does not serve any purpose except to make you feel angrier.”  He was right.)

So instead I will simply say this … if you need to fix some wrongs or mend some past problems surrounding Ben and by extension his beloved wife and kids, then fix them. Reach out and fix them.  Address that God damn elephant in the room.   Have you learned nothing from Ben’s death?  Fixing things will actually entail you taking both responsibility and some tangible action.  If you don’t, it’s all on you.  If you feel this advice was not meant for you, it probably wasn’t.  If you feel it was meant for you, you are right.

Today I will confess that on this day last year, when Dr. H told Ben he had about three weeks to live (she pretty much nailed it, as we later found out), I already knew about the three weeks before going into that meeting. At that time I had spent just over 8 months trying to find the balance between hope for Ben and a need to ease the kids into what was inevitably going to happen.  (Let me tell you, that is a terribly shitty place to be stuck.  Terrible.)  But the evening before we got this worst of the worse news, as we cruised the streets of Surrey in a limo looking out at the Christmas lights, my cell phone rang.  It was Dr H, and I knew what she was calling for because she had told me she would call when the time came.  And it was around 9pm when she called, so it couldn’t be good news.

In a falsely cheery voice I said, “Oh, hey, yeah, so we’re just out for a limo ride with the kids right now!” and she quietly said, “Please call me on my personal phone when you get home.”

I phoned her when I got home.  She told me it wasn’t good.  I asked her “how long” and she said “Three weeks.”  And I told her that it was time for her to tell Ben and the kids this news herself.  I told her that he deserved to know incase he needed time to take care of anything unfinished.  I told her that I had enough burden to carry and I could not forever be that person.  That my job was to be his wife and to love him as hard as I could for as long as I could, and her job was to do these crap jobs like telling the most wonderful man in the world he did not have long to live. She agreed, and told me to bring everyone down tomorrow and she would fit us in.

That was really good of her, but the problem is that a specialist doesn’t just “fit you in.” Nor do they tell you to bring your kids.  So now I had a problem.  How did I tell Ben what she wanted without scaring him and making it impossible to allow him just one more night of peace?  How did I convince the kids to come without alarming them too?  And I was angry to have to carry that burden, and I am angry now remembering it.

When I went downstairs and told Ben about the next day appointment, Ben pushed it a bit. I wasn’t easily able to blow him off but I was vague.  “She wanted to talk about the MRI that had been done that morning and yes, there was a bit of bad news about how it spread BUT we still have a Nivolumab treatment on Dec 24th so that’s great!  Oh, and, um, she thought it would be good for all of us to come down and see her.”

Ben was not a stupid man, and of all times, this was the one where he started pressing for detail.  “Why do the kids need to come?  They are busy.”  “No, they’re not, and they WANT to come, Ben. Its Christmas holidays.  They like to be with you.”  (And off I went to try to gently explain to the kids why it was so important they come and be with their Dad the next day, and why they could not for one second make him think they had anything else to do or he would jump all over it.  I don’t remember what I told them.)  “It can’t be good when she wants the kids to come.”  “Well honey, I think she just knows we’re all off on holidays together and she’d like to get them up to speed.  Let’s just wait until tomorrow and we’ll have a drive down there.  Maybe some lunch.”  Sigh.  I went upstairs and cried. And I frantically told Barb that she must find a fake way to meet us there, because if he knew she was coming to this “casual” appointment he would know, and that would rob him of any tiny bit of peace he still had before that appointment.  I think she came up with “a meeting” in the area and a well timed break where she wanted to bring us coffee, if memory serves.  Good one, Barb.

So, at noon on December 17, 2015, The Saint-Onge Five and Barb squished into a room where Dr H went over the results of the MRI.  And then, as gently as she could, she told us that Ben would likely die in three weeks.  And to be honest, I don’t really remember anything after that.

At about this moment last year I was clinging to Ben’s hand.

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This would be one of those random grief waves that tend to hit.

“And we wept that one so lovely should have a life so brief”

Know Your Audience and Rough Patches

I’m scared today. A lot has happened over the past 8 months that has scared me and continues to do so, but this is kind of different. I’ve been presented with realities like “you have cancer”, “you have a tumour”, “you have a blood clot that must come out”, etc etc etc… No brainers basically. This is what you have and this is what we have to do to intervene at this point. No major choices to make.

First of all, let me tell you that I had a shitty week. I spent Monday through Wednesday in the Surrey Memorial Hospital emergency ward because of shortness of breath. Some other stuff happened too, I think, but Wendy would remember that better. I felt shitty, to say the least. I may have been getting pneumonia, I’m not sure. They eventually drained almost a litre of fluid from the space between my right lung and rib cage. I felt better after that and was released. That was a long, boring and somewhat traumatic 3 days. It kind of wore me out for a number of reasons. I won’t get into them at this point. I’m tired of complaining about them. Lol.

On Friday I was given a choice to make that can and will affect the rest of my life, however long that may be. Based on the tone and comments made by Dr. H., he was suggesting that I don’t have much time left (that’s where knowing your audience comes into play). He even commented on Wendy’s enthusiasm with respect to my recovery and laughed. It didn’t really sink in until after the appointment. I’m not sure if I’ve mentioned this in the past, but that’s a major peeve of mine when visiting specialists. They make me feel like death is right around the corner and they are here to help me get there in relative comfort. The problem is, I don’t want to die right now, and I was hoping they could help me get through this rough patch until the next one. Clearly we don’t see eye to eye.

Okay, wait a minute. I just got sidetracked. Here we go again…

On Friday I was offered a chordotomy, which involves severing a nerve in the cervical spine to eliminate pain on the right side of my body. It is a permanent procedure. There is no going back. I am apparently a good candidate for the procedure as I am in palliative care and my pain relief threshold through narcotics has been reached. Blah, blah, blah.

The reason I am scared is simple. I want to pull out of this death tailspin and get back to living, but every Doctor I see makes me feel like “this is it. The end of the ride is near and it’s time to get off.”

The chordotomy will remove the sensations for temperature and pain on the right side of my body, from the neck down. That means down my right arm as well. That means it may affect how I play the guitar. As I write this I see how stupid that sounds but it’s still really important to me. I don’t want to be in pain and I hope the procedure works, but it may mean that I won’t be able to feel guitar strings anymore. I’m not sure. The Doctor seems to think that I’ll be fine and should feel them but no one is 100% sure.

Another reason I am scared is because I can’t seem to pull out of this tailspin right now. The mental one and the physical one. I can usually pull out of the mental tailspin pretty fast. I would like to think I am mentally strong but this one is dragging on and on. I see my body melt away in the mirror and I watch the numbers on the scale go down everyday, and I have to admit I feel like my body is failing me. I get focused on that and then I can’t get back on the mental fast track. I’m finding it really hard this time around. Maybe that’s why this chordotomy thing is bugging me so much. I don’t know.

So if anyone out there has some spare mental strength they can throw my way, I would appreciate it. I’m having a really hard time right now. This has been the roughest patch so far.