POG Results and Friends

Once again, there is always some good with the not-so-good.  Radiation has been tough on Ben but it seems like he may have made it over the hump where the pain may just be starting to ease off and the radiation having some positive effect.  He continues to be treated right through this week and into next week.  Ten treatments in total.  On a few of the days, our dear friend Whitney was working in Radiation so she administered Ben’s pain medication and helped him through.  Thank you, Whitney.

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On another positive note, this guy came to town to spend a few days with Ben:

 

That is Jeff.  (Yes, he is hidden behind the emoticons so that his face isn’t out there for all to see.  I chose the most suitable emoticons.  lol)  All the way down from the Great White North.  I was feeling generous and gave him some leftover juice.  He was super excited. Hahaha

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Although I know he loved the juice (haha), I think he was a bit happier that we were able to hit up the Noodle Box while he was here.  He says that was the real reason he came to town, but I don’t believe him….

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Yesterday we met with Dr K.  As usual we brought along an entourage …

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Without beating around the bush,  the bottom line is that the POG trial unfortunately did not yield any useful results for Ben. That is obviously extremely disappointing and we had a good cry over that, but it is important not to lose hope and it is time to re focus.  We are now in the process of trying to get Ben into a trial in Toronto or get him access to a drug here called Nivolumab.   Nivolumab is a newish drug and it is a PD-1 inhibitor.  A recent study showed that 100% of collecting duct tumours express PD-1 and according to the oncologist, the drug is associated with an excellent chance of response.

The issue with Nivolumab is that it is currently only covered for malignant melanoma, and it is not yet covered for Collecting Duct Carcinoma. Apparently it costs somewhere in the area of $200K / year.  US Dollars.  Ouch.  Having said that, the first step will be to just get ahold of it and try it for a couple of months to see if it does anything, and then worry about the rest later. The emails have been flying this morning and many attempts are being made to get this drug covered for Ben.

The upside of being enrolled in the Toronto trial as opposed to taking the Nivolumab would be that the drugs in that trial would be covered, although we would have incur the costs of flights / accommodation etc.  I don’t know what that will look like yet so I won’t speculate.

We will take whichever option comes first.  I don’t have enough information about the drugs being used in the Toronto trial, so I can’t really speak to why they would be good.  (I was told, but I can’t remember).  I do know that it was clear that we need to just take whatever comes first.

And so we wait….

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Hug your families.  xo

PET Scans, Oncos and Canceros Rancheros

So Tuesday was my PET Scan and Wednesday was my appointment with the oncologist. The PET Scan went relatively well, the oncologists appointment did not. I shouldn’t say it didn’t go well, Dr K is a very pleasant doctor but the news he delivered wasn’t great. It turns out that the cancer (aka: Canceros Rancheros if it was a Mexican dish) has spread a wee bit more towards the nerves that affect the front of my leg. Which means that all of the pain I’ve been suffering from recently was not in fact muscular pain it was nerve pain related to my Mexican dish.

So, where do we go from here? Well Dr K will consult with Dr P and look into some further radiation treatment. Hopefully they can treat that particular area and relieve some of the pain.

The next plan of attack was to take another chemo drug that sounds like Sinutab but is not Sinutab. Wouldn’t that be cool? Sinutab for cancer. They’d make billions. Anyways, I turned down that great opportunity in favor of waiting for the POG results. I am hoping, fingers crossed, that the genetic sequencing done by the POG Trial comes up with some form of treatment. Because to be quite honest, it looks like we’re coming to the end of potential treatments.

My wonderful wife has been juicing the shit out of our local organic vegetables and making me drink her concoctions on a daily basis. I have to admit that while her first juices tasted like science experiments gone bad, her most recent recipes are quite tasty. Keep it up Wendy. At the very least it’s giving me a lot more energy!

Well that’s my update du jour. I wish I could write more but my leg is bothering me and well, to be quite honest, I’m feeling a little down right now.

Until next time.

Sleep And Breath Elude Me

I do a lot of walking to relieve anxiety.  Yesterday I went three times, and still I woke up in the middle of the night gasping for breath.  I have no idea how to fix this problem, aside from the hand of God reaching down and curing Ben.  Most of the time I feel like I am in the middle of running a marathon.

Today I will be in the hospital for my own annual cancer check, which is always a stressful time on its own.  This will be the first time I have undergone this test since Ben’s diagnosis, and the anxiety leading up to today has been intense.

Ben is doing such an amazing job of hiding his pain for the kids that they really don’t realize how much he hurts.  That means that their lives continue on (a good thing), which means they continue to experience the same ongoing teen angst and problems as they normally would.  THAT means that in addition to this current shit storm that is our life, we still have to deal with crying girls having friend problems at school, exam anxiety, boyfriend problems.  Let us not forget that our sweet boy remains a recovering addict – doing wonderfully, but it would be ridiculously naive to think that he does not have his own struggles.  His safety is also our priority. Raegan has nightmares.  I have nightmares.  These are very real problems that cannot be ignored or pushed aside because of cancer.  We have to continue to keep our family safe and protected, but this is all enough for us.  No more.

I cannot take on anyone else’s anxiety or hurt when I cannot breathe myself.  I cannot take the time to imagine anyone else’s pain when I can barely fathom my own.  You must not ask me to.  I think it must seem natural to reach out to the person closest to Ben to discuss the pain that so many people who love him are feeling, but you must not.  Not right now.  I can take on four people’s hurt … Ben, Zak, Jaime and Rae.  That’s all.  My limit has officially been reached.

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Our trip was fantastic and I’m so glad we went, but the pain followed Ben and when he hurts, I hurt.  It keeps him awake and tossing and turning, and the tossing and turning itself is painful for him.  With every turn comes a moan of pain.  How I despise this disease.  I am angry this morning. Or possibly just sad.

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I think I feel about the same as this little one looks.

Yesterday this was on the news:

http://www.ctvnews.ca/health/b-c-doctors-turning-to-dna-to-develop-personalized-cancer-treatments-1.2583777

This is the trial that Ben is in.  Another person has taken an amazing turn for the better after being placed in this trial. I am happy about that.  Ben needs something to start shrinking that tumour.  He needs pain relief from something other then constantly increasing his medication.

I am going to walk now.  And try to breathe.

Wendy

**Update** My own check went fine and the drugs knocked me out for most of the afternoon.  Lucky me 🙂

So Much Pain….

Poor Ben.  Not even six hours post chemo and he is writhing in pain.  Literally writhing in pain.  Worse then this:

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Don’t ask me why this always happens.  No one seems to be able to give us an answer.  It just seems as though his pain is greatly exacerbated by the chemo.  The meds really don’t touch it.  It might even hurt this much:

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Yuck.  Anyway, to save myself time I am going to copy most of my recent FB post into this blog, since it has an outline of the better part of our day.  Here it is:

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Isn’t this what everyone does on a Monday afternoon? Mexican food followed by chemo.

As usual, Ben stays in good spirits (well, at least for the camera, but that’s something) despite the issues today.

For example, our first appt was two hours late by the time Dr Cocky McArrogant breezed into the room for 30 seconds and diagnosed Ben’s hearing problem without asking any questions. Much like Crown Counsel, Dr Imso Important clearly hadn’t read the file before walking in the room, because you know his time is much more important then ours.

After that we had issues with Ben’s consent forms for the clinical trial. The same forms that I handed in a couple of weeks ago and said “please please please don’t lose these. They are very important.” Yeah, well, I’m pretty sure the cancer agency “misplaced” them and totally forgot he was supposed to be entered in the POG trial at all. I kicked up some dust today and remedied that. Supposedly his biopsy will now be next week. It should have happened a week ago, so I guess we’ll see.

Anyway, he’s sitting in the chemo chair as I write this. The drama continues, as the chemo nurse had tons of problems getting the IV in. (Cal Traversy, please tell Whitney she needs to transfer to VGH and take care of Ben). Apparently Ben has “crooked veins.” Seriously. Crooked veins. Who has crooked veins??!! What kind of genetics did I marry into?!

He’d better not pass on any of these weird defects to our kids. Crooked veins, funky chromosomes… Ben Saint-Onge I may sue you for failing to provide full disclosure before our wedding day! You definitely led me to believe you were pretty close to perfect at the time. 😏. Now it is too late to toss you aside. I am apparently stuck with you. The statute of limitations for suing one’s spouse for failure to provide full disclosure runs out at the 20 year mark.  Too bad for me.

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There was discussion about putting in a portacath for the next while so they can stop poking him. Also, the drugs cause a lot of pain in his hands so a portacath may help with that since the drug won’t go into his hand. If you want to see how much his hands hurt from that damn drug, try patting him gently on the hand under the guise of comforting him. You will learn some new swears. Lol.

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There will be no personal visits for awhile – Ben’s white blood cell count was down to 1.3 today. It is very likely to now go right down to zero which makes him extremely susceptible to infection. We have BIG plans coming up and we don’t want them messed up! So texts, phone calls etc are all welcome – just no personal visits.  Ben does read his texts and emails….sometimes it takes him a while to respond.  Please don’t take that as a sign he doesn’t want to hear from you….he’s likely just sick and / or trying to rid himself of pain.  In fact, random “feel better” texts, stupid jokes and / or funny pictures that make him laugh will be extremely helpful in keeping his spirits up this week.  His body is doing a lot of work right now:

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So thats it for now.  Ben will likely be preoccupied the next few days with feeling really crappy, and I will likely be preoccupied with cleaning up vomit.  Perhaps after that, Ben will feel well enough to disclose Surprise #2.  In the meantime, lets just say that we intend to

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Thats right.

PS. We have decided to always pronounce ‘chemo’ with a “ch” sound. Like CHew or CHoice. Because it makes us laugh. So when you see me write “chemo”, make sure you read it as you know we are saying it. It takes away the seriousness of it. And we are tired of chchchemo being serious. (You pronounced the “ch” that time, didn’t you? Yeah you did. 😉)

xo