The Worst Blog Post

Just as I think life is picking up and moving along reasonably well, a special event will come along and derail my life.

It’s hard to watch everyone else move forward with their lives and prepare for the big events. I can put on a smile just like everyone else, but behind it I’ll admit to being frustrated that the world is not focussed on the fact that Ben is not here to watch our daughter graduate.  I’ll admit to finding that very annoying.

Reasonable?  Whether it is or it isn’t, it doesn’t matter to me. It hurts.  Badly.  I feel like the kid in school who no one wants to partner with for gym class.  All alone. I’m frustrated.  I’m annoyed.  I’m downright pissed off and I really don’t care if it’s reasonable or not.  I’m angry.

I am going to help Jaime get ready for her grad, and I’m going to take pictures and I hope she has a lovely evening.  And then I’m going to cry for all that should have been and all that never will be.  And I will be angry and I will be resentful and I will be overwhelmingly jealous of everyone I see who has a partner by their side.  And unexplainably I will be the most angry with the friends I love the most, because I am just so jealous that they still get their future with their partner, and Ben and I were supposed to be able to go forward with them.  That’s my dirty little secret … I sometimes feel immense dislike for every single person I know, because their lives move on and mine does not.  There you have it.  I may be the worst person I know.

I will be smiling at grad, for Jaime, but inside I will be screaming and throwing a temper tantrum. I am not over it.  I will never be over it.  I think about Ben almost every minute of every single day.  And sometimes I turn away from people because I want to say things that probably shouldn’t be said.  It’s hard to keep that much annoyance inside.  I’m quite resentful, in fact.

This is a terrible blog post.  The worst.  I’m even frustrated at myself because I’d like nothing more than to purge all these shitty feelings out onto paper, but they won’t even come to me in any type of eloquent form.  All I’ve got is this insane desire to throw things around and kick something.

On another note, did you know there has been some discoveries made with regards to Collecting Duct Carcinoma?  No?  What, you don’t research it every night before you fall asleep?  That’s odd, because I do.  Here’s what is now known since Ben died:

  • Some cases have been associated to kidney damage caused by an overuse of painkillers.  Well gosh, that would have been super nice to have been discovered about 10 years ago before Ben had to start swallowing over the counter painkillers at an alarming rate since his car accident.  I wonder if I can sue all over again and have the other driver charged with murder, since there was a bit of a snowball effect there.  Maybe it’s all that other driver’s fault.
  • apparently there are some links with chromosome mutations.  Great.  It could be a chromosome thing.  That sucks.

Also, I would give my right arm to go back in time so I could try taking Ben to an alternative treatment center somewhere else, or even to get him to try Sunitinib.  That was the last drug that Ben could have tried when the Cisplatin and Gemcitabine failed.  I talked him out of it.  I did.  I didn’t want him to try it because I thought he’d suffer more side effects and that it wouldn’t help.  And now I think I may have stolen his chance from him.

I’m going to go cry now.  Sometimes that’s just all you can do.

worst blog post

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Cisplatin, You Asshole

When last we paused in this Tale of Crappy Cancer and Chemo, it was Sunday Day 7, and Ben had just begun vomiting. He ultimately became very sick that day and vomited for hours after I published that post.  He was also in an unbearable amount of pain.

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I contacted the Cancer Agency and they hooked me up quickly with some more drugs.  The vomiting may have been from methadone withdrawal, due to missing one or more doses.  As the nurse said yesterday…. “people usually only make that mistake once.”

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So that brings us to yesterday.  Monday.  Day 8.  Chemo “top up” day and end of cycle one.  I woke up just as Ben was getting out of bed in the morning, and one glance in his direction and my heart was broken.  He was very upset, and not for the obvious reasons.  Unfortunately he discovered he has now lost some of his hearing due to that damn Cisplatin (the main chemo drug).  Not “just” tinnitus, which was already driving him nuts, but actual loss of hearing.  Ben had decided to do a little early morning Google research, and was shattered to read that the hearing loss is permanent.  For some of us that might not be the end of the world in the grand scheme of what’s happening, but for Ben it is an indescribable, horrific loss.

Music is everything to Ben.  Playing guitar.  Attending concerts.  Music is his hobby, his passion, his bliss in life.

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Just imagine your life after your passion is ripped away from you.  You can no longer run, or read, or water ski, or golf, or paint, or knit, or garden, or ride a motorcycle, or travel, or whatever it is that you love to do.  Gone.  Thats it.  Done.  In an instant.

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Rae and Ben

I emailed our oncologist who asked us to come see him when we arrived for chemo on Monday.  We met with Dr K and Ben explained what was going on, and in a nutshell he told Dr K he no longer wishes to continue with the chemo.  The hearing loss is too much for him to take, and likely the cisplatin will damage his hearing further if he continues.  On top of that it is also completely kicking the shit out of him.  He has barely moved for a week, and quite frankly the effects seemed to worsen for him as time went on, instead of getting better.  Dr K agreed that the Cisplatin does not seem to be the drug of choice for Ben.  He said that even though hearing loss is a possible side effect of cisplatin, it “never” actually happens.  (Ha.  Wrong.)  So clearly it is not the drug for Ben.

Having said that, the combination of drugs that Ben is receiving (cisplatin and gemcitabine) are considered the “gold standard” of treatment for this fucking nightmare of a rare cancer that is kicking the shit out of My Love. The combination of those two drugs is the best there currently is.  Anywhere.  So, if Ben can’t take one of them, where do we go from here?

I asked Dr K about POG (Personalized Onco-Genomics).  That clinical trial is closed, but regardless he is still asking and still trying to get Ben in.  Some of you may have read about this a couple of months ago:

https://bccancerfoundation.com/about-us/news/bc-cancer-agency%E2%80%99s-pog-program-leads-unique-breakthrough-patient%E2%80%99s-treatment

In a nutshell, a Vancouver woman had stage IV terminal cancer with tumours wrapped around her spine.  Within weeks of receiving this treatment she had no sign of disease. While that sounds awesome, we have been cautioned that she literally won the lottery with those results.  Dr K says that POG is the future of oncology, but it is very new and no one expected it to work like it did for her.  Others have not been so lucky.  Still, I reminded Dr K that in a backwards sort of way, Ben “won” the lottery already, considering the odds of getting this type of cancer in the first place.  And then he “won” it again with this whole hearing loss thing that supposedly “never” actually happens to people.  So why shouldn’t he REALLY win it, by being the next one in the POG trial with no sign of disease.  Right?

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So Ben finished his round one of chemo, because the “top up” involved a dose of gemcitabine, not cisplatin.  Barb paid us a quick visit and brought us a little pick me up.  Note the Starbucks coffee.  Thanks Barb.

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We left the hospital with several new prescriptions and a promise that the oncology team will be discussing Ben’s next best option over the next two weeks.  They said they wanted to do some more research and put their heads together to figure out what is best.  We meet again with Dr. K on August 6th, and then the next chemo treatment (whatever that will be) remains scheduled for August 10th.

Tuesday was a better day.  Ben was tired and nauseous from the chemo but that is to be expected.  Its the hearing problems that are the worst right now.  Not just the loss of hearing, but the sounds he hears and his inability to differentiate sounds.  I am hoping that because he only had one dose of cisplatin, that perhaps his hearing might restore itself in time.

Cisplatin is an asshole of a drug.

One bright light today….the pain doctor called and let Ben know that it has been decided that he will receive a treatment where they will cement the fracture in his pelvis.  That will help with the pain, and they will also do a nerve block on him.  Yay. Little bits of good news are, well….good.

Tonight Ben was very briefly able to get up to do this:

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Thats right.  That is Ben and Zak enjoying a moment out back by the fire.  How I truly appreciate the small things now.

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Hug your families. xo

PS.  Just an added note regarding POG.  Friends and family should know that even if Dr K is able to get Ben into that trial, his case is much different from the woman who shows no sign of disease.  Ben would have to submit to another biopsy, and then scientists would have to figure out which are the significant mutations.  Then they would have to figure out what those mutations respond to, if anything.  Then there would be the question, “does a drug(s) exist that would stop those particular mutations?”

I think that is a simplified explanation.  Barb can probably explain better.  Anyway, I say that not to discourage, but I don’t want to put out false ideas of a cure.  Having said that, I will now focus on the hope that Ben will finally win the “good” lottery.