A Letter Left At My Front Door

Well, I made it.  While the season is not yet over, I have made it through my first Christmas.  I’m told (from those more seasoned than I) that the second Christmas / year is harder than the first.  Perhaps that’s true, but for now I will allow myself a little bit of self satisfaction knowing that I made through number one.  And I’m still here to tell the story.

Every day is a mixture of good and bad, but in honour of Christmas I’ll start with the good part.

Back in November I wrote this post about Christmas stockings  (click here) and I mused over the fact that I would never again open a stocking from Ben.  He did great stockings, and that is honestly something I will miss so much. So you can imagine my surprise this morning when I wandered downstairs and discovered that my empty stocking had been moved from the fireplace onto the chair, and it was stuffed. Full.  It was overflowing. And I will confess to getting a bit teary eyed as I realized (thought) that my sweet parents had stuffed my stocking after I had gone to bed.

When my Mom came into the family room for our morning coffee I moved my stocking and all the contents (everything was wrapped individually so I couldn’t peek) onto the floor so I could sit on the chair, and I said to my Mom “You didn’t have to do that.”  I was referring to the fact that she and Dad did not have to fill the empty space in my Christmas by taking over the stuffing of my stocking.  Mom didn’t answer me but I assumed that was because her hearing is a little less than it once was (sorry Mom), or because sometimes we all just don’t know what to say in those moments where you find yourself trying to stem the waterworks.

Anyway, I was distracted from the full stocking because everyone wandered downstairs and I was busy taking the yearly Kids-On-The-Stairs photo….

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…. and we all went into the family room as per tradition to open our stockings.  When the kids were finished, I started in on mine.  I forget exactly what I said but at some point while unwrapping the many gifts I said something that made my mom respond, “I didn’t give you that.”  Whaaaattt???  I assumed she was joking but she insisted that she had not stuffed my stocking.  At least not with all those wrapped gifts.

I looked at the kids and asked them who stuffed my stocking, and each of them denied it. Zak said that if he had done it he would have taken the kudos for it (haha) so I knew it wasn’t him.  A Christmas miracle, it seems.  It certainly did appear as though Santa had popped down the chimney after we all went to bed, and I was briefly creeped out as I thought about the fact that an unknown person appeared to have been in the house. (Then I thought we had the makings for a made for tv Christmas movie.)  Anyway, after much prodding I managed to get a teeny confession from Jaime …. she knew who had filled my stocking and she had helped by getting the gifts into it, but she refused to tell me who it was.  She still will not say, and I swear I have no idea at all.

This is what I unwrapped …

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It is possible that a few items were left out when I took this picture, but let me just say to whomever is my Santa … thank you from the bottom of my heart.  I am so moved that someone would do that for me…to try to fill in where Ben is not able.  I cannot tell you how much I appreciated your efforts to try to ease my pain.  Thank you.

Christmas morning continued …

…. and there were smiles amongst the underlying sadness.

Eventually we were finishing up with the gifts and for some reason (I forget exactly) I ended up opening the front door and discovered a note.  Well, technically I did not discover the note immediately.  I actually discovered this:

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I discovered this gigantic Santa sack sitting on my front porch, overflowing with gifts. What the heck?  After hiring a crew to lift it into the family room, I opened the note that came with it:

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I am not often rendered speechless as my nearest and dearest are well aware, but today I was.  As I write this I am teary over the love that flowed from that Santa sack.  I know it was put together to try to help ease the pain of not having My Ben here to be my “Santa”, but in fact what it actually did was serve to remind me, once again, that there is still love in my life.

Paula (Kathy), Connie, Susan, Lelita, Teresa, Christine, Nancy, Lisa, Beth, Jackie, Barb and Lisa … what can I possibly say to you?  There is nothing adequate.  Thank you.  Thank you for thinking of me, and of the kids, when you all have your own families and your own things going on. Thank you for walking with Ben and I every minute of his last nine months.  Thank you for your constant love and support.  Thank you for your kindness.  Thank you for being gentle with my heart.  Thank you for your understanding when my head is not in the game.   Thank you for reminding me that I am not alone.  Thank you for knowing how much it hurts. Thank you for being there for me when Ben died. Thank you for still being there for me a year later, and for being a constant reminder that all is not lost forever in my world. Thank you for your friendship. Thank your for the coffees, the shopping, the laughs, the tears, the dinners, the quiet company, the hugs, the workouts, the pep talks, the yoga, the texts.  Thank you for the insanely overstuffed stocking that made me smile, that I loved so much, and not one bit of that love was due to the actual gifts (although….come on you crazy ladies … who could not love all that?!) but because I was reminded that even when I’m alone, I’m not alone. So … just … thank you.

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When the house was quiet and everyone had left for a bit, I had time to do this …

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It was a nice visit.  I didn’t cry.  But I did do a shot of Kracken while I stood there. 🙂

Tonight there was this:

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That is the table I worked on for weeks.  Napkins folded courtesy of Jaime.  Shot glasses to release the Kracken (why couldn’t he have loved a nice white wine?). Empty spot at the head of the table for Ben.  And there was this:

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And then there was this …

And although Chase wasn’t at our dinner table, I stole this picture taken today from Raegan’s Instagram, because his presence was missed tonight:

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So there you have it.  That was our Christmas.  The first without Ben, but I never really felt alone.

Mom and Dad … if I failed to mention it while you were here (and I think I did), thank you for staying here with us.  Your presence made it easier.  And thank you to all the others out there who came by over the last week to drop off baking and the champagne – because there is really nothing that can’t be helped by deliciously unhealthy eating and some bubbly, am I right?

I mentioned at the beginning of this post that every day is a mix of good and bad.  I started with the good, and honestly I do not have anything bad to follow.  Sad?  Yes.  Lonely?  Yes. I don’t anticipate that ever changing because Ben is never coming back, but I did not feel alone.  Life without Ben is sad, and there’s no getting around it.  Ever. But I did not feel alone.

So thank you.  And Merry Christmas.

Dear Kathy … You Are Not Alone

Dear Kathy.

This morning I woke to find the comment you wrote on my post entitled “I Still Look For Him.”  I could see that today was a particularly painful day for you and I started to write a response. My words went like this …. “how I wish I could help ease the pain you suffer.” But as I wrote those words I realized that wishing alone does nothing, and so instead I have chosen to write this: “Let me help ease the pain you suffer.   It is a pain I know intimately well, and I think I can help you.”

The burning question in your mind must be “How?  How can you help me?  Can you bring my husband back?”  I know that question well because I ask it all the time.  When people say “how can I help?” I think to myself – and sometimes say out loud – “Can you bring Ben back?  Because that would be most helpful.”  It makes for awkward conversations at times but at least it gives me a chuckle when I see someone stumbling for words after hearing my honest response.  People don’t expect honesty, I think.  Or they don’t want it. They prefer to hear “everything is fine, thank you for asking.”

Anyway, back to how I can help.  I think I can help you by continuing to share my own story with you.  (Sorry … no magic answer there.  I know you were hoping for more). I think I can help you by reminding you that you are not alone.  By reminding you that, most sadly, others do suffer with you / us and do know our pain.  And others do move through the pain toward a brighter future.

I have come to know that it is a fallacy that people “get over it,” but I believe people do “move through it.”  I am moving through it, Kathy.  So are you, whether you realize it or not.  I move through a little bit more every day, sometimes with two steps backwards, but I do move through it and so do you.

For me, I am doing it by just being as honest and true to myself as I possibly can.  I am doing it by trying to make sure that I do exactly what feels right at any given moment. Sometimes that isn’t pretty.  Sometimes it involves tears and snot and making other people feel very awkward and uncomfortable. Sometimes it means avoiding people when I have no idea why.  Sometimes it means hurt feelings – both mine and others’.   I try to be kind to everyone, but if other people’s feelings get hurt simply because I feel this odd need to re-enter the real world at a snail’s pace by dipping one toe in the water at a time, so be it.  I cannot and will not worry about their hurt feelings, because my need to do what I need to do supersedes their needs, quite frankly. I’m being selfish and I’m glad I am, because I strongly believe it will help me in the long run.  I believe it already has.  If it takes me 18 months or 24 months or 36 months or longer to fully immerse myself back in the real world of visiting with people and doing some of the things I “used to do,” then I say so be it. People will just have to patiently wait for me or move on without me.  The hurt feelings of others are irrelevant compared to my pain, so I’m not going to spend a lot of time thinking about it. As you and I are intimately aware … life is too short to waste time worrying about the trivialities.

I do not believe that you or I will ever find anyone who understands us like another person who has lost their own spouse. There is no loss that is the same as losing your life partner. Regardless of how fiercely one may love their child / parent / sibling / friend they simply cannot understand the pain of losing their spouse until it happens.  All loss is not the same.  All loss is painful, yes, and nowhere will you ever find me saying that my loss is more or less painful than anyone else’s loss.  But all loss is not the same.  I hope to never understand the pain of losing a child, and I will not pretend to know what it feels like to lose a child just because I have experienced my own extreme and unrelenting loss that began the day Ben cried “I have cancer.  It’s in my kidney and my bones.”  So I don’t want anyone who hasn’t lost their own spouse to presume they understand my pain.  On the day your spouse dies you are thrust unwillingly into an exclusive club that you never asked to join, and only other members of this shitty “Dead Spouse” club can truly understand.

As you know, aside from the fact that you lost the one person you had pledged to grow old beside, you also lost so much more.  You lost the security you felt in knowing he would be there when you got home at the end of the day. He was supposed to be there always. When you struggle with raising your kids, he was supposed to be there struggling alongside you. When your dishwasher broke, he was there. When you got the flu, he was there. When all the kids were out for the evening, or gone for the weekend, he was there. When he wasn’t there, you knew how to reach him. Perhaps you even relished in the free time because you knew he was coming home eventually.

Being alone back then did not mean staring out at the vast “alone years” ahead, it meant being alone for an hour, or a weekend.  It did not mean forever.

Losing a spouse robs you of the person who promised to hold you as you watch your children leave the nest and move across the city, or the country, or the world. Losing a spouse forces you to look around and say “Now what do I do with the next 40 years?” Losing a spouse forces you to acknowledge that when you send your babies out into the world, you will be doing it alone. There will be no one there to hold you and cry with you as you wave goodbye to your baby. Losing a spouse means there is now no one in the entire world who loves your children as much as you do.  Losing a spouse is lonely. A kind of lonely like no other. A kind of lonely that can never be filled.  Losing a spouse robs you of the person you immediately turn to, to tell them something trivial that no one else in the world would really care about.  Losing a spouse robs so many people of financial security. Losing a spouse robs many of the health care benefits that covered their children through their spouse’s employment. Losing a spouse robs many of their homes.  Losing a spouse means you have to figure out how to change your own tires, buy your own cars, kill your own spiders, find someone to fix your roof, and eventually maybe even pack all your belongings by yourself to move houses.  The last time I checked, there was no friend, child, sibling or parent who filled all those roles. Just your spouse.  And they are gone.  Forever. So no, there is no loss the same as losing a spouse.

I have found that people tend to say “There is no greater loss than that of losing a child.” (Someone actually wrote that in an email to me shortly after Ben died.  Seriously???)  Well, I beg to differ.  And anyway, do we really need to put loss on a scale?  Which type of loss we presume to be greater? Unless one actually loses a child, a spouse, a best friend, a sibling and a parent all at the same time, it would be safe to say that a person can never truly know which one feels like the greatest loss to them, right? And thank God for that.

I do know for sure that from the moment your child is born, you know somewhere in the back of your mind that they are not your life partner. You borrow them for 18 years and then you hope that each of you mutually love and respect each other enough to be friends for life. But inevitably we turn our children over to their own love with whom they can share their life. They will belong to someone else. Someone else will,and should, come first to them, and you will still not have your spouse.

Anyway, Kathy, I do understand. I understand so well, and I hope it helps you to know that. But I will also say this, and I believe it too, that life is a gift that was robbed from our loved ones. It was not robbed from us, even though I know that sometimes you may wish it was. I know that some days I certainly do.  But for whatever reason, you and I have still been left with the gift of living life, and your husband and mine would want us to live it. It is not a gift worth having if it is not lived and appreciated fully. Maybe not today, and maybe not for the next while, but eventually you must live it.  They gave their gift up unwillingly – there is no way they would want us to waste ours.

I believe the best thing I did for myself was to ignore everyone who had opinions on what I should do to heal. “Get back to work” was a big one. I caved to that pressure initially and it was a terrible mistake. I couldn’t focus, I couldn’t think, I couldn’t breathe without crying. It added to my torture, and so I left. I took time with my kids but mostly I took time for me to figure out what I needed in order to breathe, and live. I don’t regret it.

I still haven’t fully gotten to that place of breathing and living easily, and I probably never will. I get hit by waves of grief and I go with them. No shame. I do what I feel I need to do to get me through the next wave and it doesn’t matter what anyone else thinks because they are not living my life. I’m living it. And Ben would want me to.  So I need to do what I need to do in order to get where Ben would want me to be.

Ben would not grieve in the same way I am, which is ok. Neither would my sisters, my parents or my friends because they are not me. My kids do not grieve the same way I do because they are teens and quite frankly they are annoyingly resilient.  Thank God for that. As my doctor recently reminded me, that’s the way it is supposed to be. But right now I need to do what is right for me. I am feeling my way through life carefully and if something doesn’t feel right then I try to honour myself and Ben by not doing it. I am no longer afraid to say “No.”  Usually I succeed in doing what I need to do. Sometimes I cave to the pressure of others who think they know better, but not often. I get stronger at doing what I need to do the more often I do it. And I remind myself, “They do NOT know. They do NOT understand.” Despite their love and compassion, they don’t get it. They can’t get it. And that is a good thing. That’s ok.  I think I’m doing an OK job anyway.

Kathy, I wish you a peaceful Christmas. Maybe a quiet Christmas. Maybe a loud Christmas. Maybe a Christmas buried in helping others which can possibly be a help to yourself. Whatever feels right for you. Just know that there are others who do know your pain, and although those people may not be directly present in your immediate circle of family and friends, they are there. Reach out if you need to and tell someone you need a shoulder. Reach out to someone who actually knows your pain.  Consider joining me at Camp Widow in the New Year.

One thing Ben said early on (and wrote about in this blog) was that he knew there was someone out there in the world who had it worse than him. And he was right. Even as he drew his last breath there was someone out there who had it worse than him. And even though we all still need to cope with our own pain, I do try to remember there are people out there who have it worse than I.  Remembering that helps me.  Maybe it will help you too.  Or maybe not.

I promised Ben I would not crumble, and I won’t. I will continue to put one foot in front of the other and some days I will only be doing it just to get to the end of the day. Other days I will be doing it because I want to actually go somewhere.  My own levels of agony are getting to a point where I no longer want to rip out what is left of my heart out and throw it at the disease that took my Ben (I tend to think of cancer as something tangible in my odd brain) and scream “why don’t you just take what’s left, too!”  I consider that progress.

Lastly, besides actively seeking out people who know my pain, the other thing that helps me through is by finding very specific ways to honour Ben.  Carving ‘Ben The Titan’ everywhere I go is one of them.

Toasting Ben with Kracken on special occasions is another.  The next time I do it I will yell “Release the Kracken!” just as he did.  And I will ask others to do so too!

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Having a candle holder engraved so that we can light a candle in Ben’s memory is a way we can remember him on all our “occasions.”

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This year I had our final traditional Saint-Onge Five Christmas ornament made, after countless years of hanging family ornaments on the tree.  These are only some of them:

And the final / last one made this year, where the 5th snowman has angel wings …

I created a headstone that honours Ben and tells the world a bit about what kind of man we lost. (Below is the computer rendition that is being engraved in granite as I write this post. Ben’s photo will go in the white oval)

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My kids and I have decided that going forward we will forever find a way to gather together (even if it needs to be via Face Time) every single year on two specific days … Ben’s birthday and the anniversary of his death.  (I will keep our wedding anniversary to myself.) We will take the time to remember the man he was, the husband I had, the father my kids had.  And then we will go about our business of living our lives the way he would have wanted, and the way I promised him we would.  At least, that is the plan.

Kathy, I know you’re tired.  I am tired too, but I don’t believe that will last forever.  The pain you feel is the price you are paying for intense love.  I bet you wouldn’t trade the pain if the other option had meant loving your husband less deeply.

I hope that something I said was helpful to you.  If not, I hope that you are comforted by simply knowing that I understand.  I really understand.  But I wish I didn’t.

Wishing you peace and love and a desire to move through.

Your friend,

Wendy

I Still Look For Him

I still look for Ben.  Yes I do.  Not so much in person (although I do confess to scanning the cafeteria at work in hopes of catching a glimpse.  And also,  I can’t get a coffee from the office Tim Hortons without picturing a particular moment where Ben and I were once standing nearby having a rare chat while working), but rather, I tend to look for him online.  The internet.

I have read everything that exists about Ben on the internet.  In fact, I wrote most of it. But still I look, as though I’m hoping he might post a new picture or write something in a new guitar forum.  I continue to read and re-read all the online comments on his obituary, and I continue to regret not having had a written guest book at his service.  I like to read about him and about how others felt about him.  I like to hear his name.

When I run out of things to look at online about Ben, I do a little further research about Collecting Duct Carcinoma just to see if there are any new breakthroughs.  Don’t ask me why.  I can’t imagine if I would be elated or royally pissed off if there was a breakthrough. (Elated for others, pissed off that it didn’t happen in time for Ben.) Recently I did find this online … the conclusion of a 2016 study:

Conclusions: Our analysis identifies several coding and non-coding transcripts differentially expressed in CDC vs CCC and normal kidney, resulting in alteration of a number of cellular pathways associated with cancer pathogenesis, progression and prognosis. These results pave the way to a deeper understanding of a rare tumor as CDC, driving the development of new, targeted therapies for this aggressive disease.

Well.  At least its nice to know scientists are still looking into it.  From the rest of the article I gleaned that there may be a gene problem in people with CDC.  But then again I have a difficult time deciphering the science-speak so I could be wrong.

In any case, I have now lived 10 1/2 months without My Love.  It is officially December, Christmas is rapidly approaching, and I still look for him. I wonder how long that will go on for?  The instructor for the workshop I’m currently taking would love that I just said that.  She wants us to get curious about our thoughts and feelings instead of being judge-y about them.  So there it is.  I am curious as to how long I will continue to search online for signs of my dead husband.  Maybe it’ll take forever.  I won’t judge myself.

When I can’t find anything new online about Ben or about Collecting Duct Carcinoma, I then spend time searching for people who can understand me.  In other words … widows. I am not fond of that word.  Widow.  Widow. Widow.  Blech.  But still, the only people who can understand me happen to be those people, and I long to be surrounded by them. Surrounded by people who “get” me.  Yes, yes, I know other people love me and have even experienced other forms of loss themselves.  I am not suggesting that one loss is better or worse than another … they are all terrible, but they are different.  If you haven’t lost your life partner then you don’t know how I feel, and that can make a person feel very alone.  At least, it certainly makes me feel alone.  So I’m all over the internet throwing in as many different search terms as I can think of in an effort to find people who understand me … “widow” “death of spouse” “husband died” “I’m too young for this shit” “why the fuck did my husband die” … stuff like that.  (I should probably spend time googling how to cure a foul mouth.  But I digress …)

During one of my many online searches I found something called Camp Widow.  There is one in Toronto, one in Florida and one in San Diego.  Each one is held once a year, with the one in Florida coming up next March.  I think I will go, even though it scares the shit out of me. What could it hurt? If nothing else, I’ll spend a few days in Florida.  Or perhaps I’ll wait until August and go to San Diego, which would be less expensive but oh so far in the future.  I don’t know if I can wait that long to be around people like me.  I currently feel like I’m from another planet and I need my own peeps, even if I haven’t met them yet. Take me home ….  (I feel like I should put a picture of John Denver in here.  Or maybe one of a country road)

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This week my Grey’s Group (Grey’s Anatomy, not Grey Cup.  Gray Cup?  Whatever.) came over to help me with dragging Christmas out from under the stairs.  By the end of the night the family room looked something like this:

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I put the tree in the opposite corner from where we had it last year.  I didn’t want to block Ben from having a proper view of Christmas.

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Right below the star on the tree you will see the first Christmas ornament we ever bought together. Christmas 1993.  Terribly tacky but oh how I love it.

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Right below that you will see the space I have left for the 2016 ornament that is currently en route in the mail. The last Saint-Onge Five ornament.  I will show you when it arrives.

By the end of the weekend the rest of the house looked something like this:

                       Note the live boughs going up the railing.  Pretty crafty, if I do say so myself.

You may recall a few months back how I was unable to bring myself to dispose of Ben’s toothbrush, until one day my cleaning lady asked me if I had a spare one that she could use.  In that instant I was suddenly able to part with Ben’s toothbrush without blinking an eye, because it was the practical thing to do.  She needed a toothbrush and I had one just sitting there.  Well, recently I’ve had the dilemma of what to do about Ben’s Christmas stocking.  To hang or not to hang.  After stewing about it and crying over it, the problem was again solved in an instant when Jaime asked, “Mom … can I have a new stocking this Christmas?” And then, when she saw the look on my face that can only mean “I-am-sick-of-wasting-money-on-things-you-already-have” she casually said, “Well maybe I could just have Dad’s.”

So there you have it.  Problem solved.  Ben’s stocking now belongs to Jaime.  And the spot where Ben’s  once hung will remain empty.  A reminder that no one can fill his socks 🙂

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So, it was a somewhat rough week but in the end it turned out ok with a few overall improvements that happened today.  The first was that an old friend and colleague of Ben’s moved back to BC and started work in my section.  That was nice.  I love to be around people who knew Ben at different times in his life.  It means I get to hear Ben’s name and I get to hear stories I may not have heard before.  It means I get to be reminded that others loved Ben too.

I also had the opportunity to have a solid laugh today with Zak … at Ben’s expense.  Zak had received a parking ticket for which the fine is $35 now or $50 later.  I told Zak he should go to court instead of paying, admit the offence but ask for a reduction in fine to zero dollars. I told him that when he gets to court he should tell the Justice of the Peace that he has to save all his money for school because his Dad went and died on him and therefore will no longer be paying for Zak’s college education.  The look on Zak’s face was priceless until he realized I was joking and started laughing.  And then Zak pointed out that he should probably save the “My-Dad-Died” excuse for a point in time where he was facing at least a $500 fine as opposed to a $35 fine.  He felt Ben might be insulted at only being able to save Zak $35 bucks.  And we laughed at that.  And we laughed again because Ben would have laughed too.

The final improvement to my week was this.  Fruit salad for dessert.

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Give your family some love tonight.  xo

Closing In On Christmas

I remember that at this time last year we were starting to get desperate.  Ben was sleeping about 18 hours a day and it was clear that time was running out.  Barb was researching like crazy as to where we might be able to go to try to find some better treatment (not to knock the treatment he received here) and I felt Christmas looming over me like a giant hand ready to squash me like a bug.

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Once again, as we head towards that season, I am at a loss for what to do.  I honestly have no idea how I envision Christmas going this year, since Ben and I created traditions that we have carried forward for almost a quarter century.  When we were young we started cooking steak and having champagne on Christmas Eve.  It was a big deal because we really couldn’t afford either.  We continued that for several years by putting the kids to bed early and then enjoying our dinner together followed by a Christmas movie.  When the kids got older we let them partake in the steak dinner, although Ben bought cheap cuts for them since they didn’t know the difference anyway.  I will never forget the first time one of the kids had a bite of a good cut and wondered why their Christmas steak never tasted that good.

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Dinner was always followed by a Christmas Eve Service, followed by a visit from the Pajama Elf, followed by a reading of “Twas The Night Before Christmas” performed by Ben using ridiculous voices.  Last year he skipped the voices, but still did the reading.

Anyway, I’m getting ahead of myself.  I guess the point is that I really don’t know how to handle this season without him.  I asked Zak how he envisioned Christmas and he said “I don’t know.”  Me too.  I don’t know if I want to be here, don’t know if I want to go away, and I don’t know what is best for Raegan who clearly wants to carry on status quo because she is big on tradition and would like everything to remain the same.

As for Jaime … well, she doesn’t really know if she’s coming or going.  She is struggling with the same thing everyone does as they reach the end of high school.  What do I do? I don’t know what I want to do with my life.  Etc etc.  It’s causing her a lot of stress and I’m not quite sure how to help her with that.

I think the first signs of the upcoming Christmas season are starting to get to all of us.  It has been rather tense around here of late.  I am trying to take it easy myself and help to lower everyone’s stress levels but I’m not sure I’m doing a very good job of it, especially as I feel my own stress levels rising.

I read this quote the other day.  “Love begins with a smile, grows with a kiss, and ends with a tear.”  Isn’t that true.

Wait…What? GOOD News?

Can it possibly be a tiny little Christmas miracle?  Why yes, it can! But first, a few pictures from our Sunday breakfast with Santa, courtesy of Mom and Dad …

Yes, Zak was missing – he had to work.  And none of my pictures with Mom and Dad turned out.  But it was a delicious meal and nice to be out with the family, so thank you Mom and Dad!  It was great timing, as Ben had had a rough few days and was just starting on an upswing.  We went home afterwards and he rested …

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Now, about this good news!

Yesterday Ben and I had no less then four appointments in a row  throughout the Lower Mainland (five if you count the fact that we had to renew the handicap pass), and at not one of those appointments did we receive any bad news.  So I consider that GOOD NEWS!

The first appointment was for blood work, and since no one mentioned anything about the results it is safe to assume that there were no significant or scary changes.  Good News #1.

The second appointment was with Dr Y, the oncologist in Burnaby who gets the final say each time as to whether or not Ben will receive another dose of Nivolumab.  First of all, he noted that Ben looked significantly better this appointment then he did at the last one.  Which is true.  Over the last three days or so his overall wellbeing has definitely improved. And he gets another dose! Good News #2.

Next … Dr. Y gave Ben a quick ‘hands on’ check and said …. wait for it…. that his liver felt smaller yesterday then at the previous appointment.  Yay!!!!!!! What he actually said was “I’m not a CT machine but your liver feels smaller.”  So I said, “Wait … you’re NOT a machine?  Cuz I totally thought you were a cyborg because you have no feelings …”  Kidding.  I didn’t.  But I thought it.  And then I focused on the fact that BEN’S LIVER FEELS SMALLER!!!!!!!  Good News #3.  We left Burnaby General with a jaunty skip in our step (or walker.  Lol).

From there we went and renewed the handicapped pass, which I dream of cutting up into teeny tiny pieces and throwing it into the wind.  Hopefully that will come later.

Off to VGH we went, where Ben had an ultrasound to check on the fluid in his stomach to see if it needed to be drained.  And lo and behold there is no increase in fluid.  In fact, there is hardly any fluid there at all and there is no need to drain!  And maybe, just maybe, it will reabsorb itself into Ben’s body. Good News #4.

Down the hall we went to visit with Dr K.  He was almost on time yesterday.  Good News #5.  OK, you may be thinking that I am pushing my luck by labelling Dr K’s promptness as a good news point, but if you had been sitting for hours at appointments on a regular basis, month after month, you would consider that good news too.  So…. Good News #5!

And then, in walked Dr. K.  And he was pleasantly surprised to see how good Ben looked, and commented on it too.  He also commented on the fact that I was laying in the bed and Ben was sitting in the chair, but gimme a break …. I’m tired!

Our meeting was brief and when he looked at previous scans he commented that the tumour in Ben’s “stomach” (I still can’t recall what its called where they actually found it) could in fact have been there before starting the Nivolumab.  Which means …. wait for it …. that, at the very least, there is no reason yet to assume the Nivolumab isn’t working!  Woo hoo!  GREAT NEWS #6!

So there you have it.  A Christmas Miracle that will allow us to enjoy today and tomorrow and appreciate all our blessings.

May you all be very blessed this season, and take a moment to remember why we celebrate.

Luke 2:10-11 But the angel reassured them.  “Don’t be afraid,” he said. “I bring you good news that will bring great joy to all people.  Today in the town of David a Savior has been born to you; he is the Messiah, the Lord”.

SAINT-ONGE STRONG!

 

Weeks?

Thank you to Christine and Rob who sent us in a limo last night to enjoy the Christmas lights of Surrey.  It was a great way to chill out after the  tough day we had. Ben had been unable to do the MRI earlier because he was simply in too much pain.  He ended up doing a CT, and we figured the results were less then ideal when the radiologist neatly maneuvered around our question “what did you see?”  She told us that Dr H would call us later. Hmmm.

Dr H did call later, but first we were treated to this:



Once we got home I spoke to Dr H on the phone and she explained that there had been rapid progression with the disease.  There is an additional large tumour in Ben’s “stomach” (not really his stomach, but I can’t recall the medical word she used).  Somewhere in that area.  As we later found out, there had been no sign of that tumour even two weeks ago.

This morning The Saint-Onge Five packed up and headed off to see the thoracic surgeon about the fluid build up in Ben’s chest.  He talked about doing surgery and told us it would be a four week wait to get the surgery once Ben made a decision to do it (if he decided to do it). Another option is to have a respirologist continue to drain the fluid like they did in the hospital.  We said we’d think about it, and we left.


 We drove down to see Dr H who had asked me to bring everyone in to see her today.  She said she would fit us in.  That is probably never a good thing when a very busy specialist offers to “fit you in.”
 Barb arrived at the hospital, and the six of us met with Dr H.  She re-explained what she said about the disease progression, and then she said (and I write this with Ben’s full knowledge and permission) that there is no evidence to suggest the Nivolumab is working, and if that is the case he may only have weeks to live.

We are shattered. Not The Titan.

Today Sucked. And Christmas Is Coming

I have no idea what happened to me today.  Possibly I am just worn out, maybe I am just not getting enough sleep in the night, but today I crashed.  Crashed.  It was one of the few days when the only thing on the agenda that had to get done was getting Raegan to her volleyball tryouts by 8:30 am, and picking her up again at 11:00.  I managed to do that but not much more.  I spent most of the day drifting in and out of sleep on the couch.  I was not a good caregiver today.

I love going to Church on Sundays.  I look forward to going to Church.  I planned on going to Church today.  And in the end I just could not get myself off the couch.  Big mistake, as it is now 8pm and I still have not even brushed my teeth.

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As Ben mentioned, he had his first treatment of Nivolumab on Friday.  He has experienced the normal fatigue, but other then that he seems to be ok. We even went out on a limb last night when prepping all his meds for the week ahead, and left out the Metoclopramide which he has been using for months to prevent nausea.  I haven’t reminded him today that he hasn’t taken it, and he hasn’t complained at all of feeling sick.  So that is good news.

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After bringing Ben home from the hospital, I drove to the ferry to pick up Lisa who came in for the night.  I put her to work immediately and she helped me decorate the Christmas tree that my friends had put together for me the night before.  I knew if I didn’t decorate it while Lisa was here, it was likely to remain undecorated until I take it down after Christmas.

It is now Sunday night.  The weekend has passed and I still have not brought out the tree skirt (or any of the other household decorations), but at least the tree is done.  Thank you, Lisa.

Raegan was in the volleyball Provincials this weekend, and Lisa and I managed to make it to one of her games.  Unfortunately, that was the game where she didn’t play. Poor girl.  Or poor us, maybe.  But at least she knew we were there.

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I also managed to find a few minutes to give Jaime a ride to (where else?) Dawson’s…

… and hit up a movie with Raegan while Ben slept.  Here is the post movie picture of Ben and Rae, which is identical to the PRE movie picture of the two of them.

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I think he might have moved a little while we were gone!  Lol.

I want him to rest and let his body heal, but man do I ever miss hanging out with him.  I think it all hit me while the house was quiet today, as it sometimes does.  I looked at the tree and wondered why I have to find the energy to decorate?  Does that stuff really matter?

The tree and the gifts have nothing to do with the true meaning of Christmas. Ben and I have had many discussions about this, and we both agree that we are definitely not interested in the gifts this year. Really….who cares?  Where does all the hype fall on the scale of what is important to us now?  Way below zero.  Even the kids do not seem overly excited for the holidays, which does make me a bit sad because we usually have a lot of fun at this time of year.  How I wish life could be ‘normal’ for them. We will do our best to make this Christmas enjoyable for them, but our focus will definitely not be on the commercialism of the holidays.  I am glad that we have always tried to keep a focus on family in the past, but it is true that we have been very guilty of falling victim to the extreme gift giving.  Not so this year.

All we want  is to have peace, calm, quiet, and time to spend with each other.  Gifts with no meaning …. not interested.  There is nothing to be purchased that can give us more joy then all of us being with each other.  I am very glad that the kids are not toddlers – I think at this point I would lose my mind in the midst of that chaos.  Peace is important.

Just peace.

So this year, if I find the time to do any more decorating, then I will do it but only if it brings me pleasure. If I don’t find the time, so be it.  Gift shopping for the kids is mostly complete.  I have picked up things here and there but I do not enjoy going to the crowded malls and I am literally incapable of going alone, so anything else will be done online.

Its not that I don’t want to recognize Christmas – I do.  And I do want the kids to have a memorable one.  But my ideas of memorable Christmases no longer have anything to do with the hype, the food or the gifts.

Simple.  I long for simple.  Stress free.  Quiet. Together.

Gentle.

Calm.

Peaceful.

Hug your families.  Its more important.

Wendy xo