HER2 and Radiation

Ben started his radiation treatment yesterday which will hopefully (eventually) reduce some pain.  In the beginning I believe it can annoy the tumour a bit which causes it to hurt more, but then hopefully it will settle down.  The radiation also adds to Ben’s exhaustion and so, if possible, he is even more tired now then before.  And so our routine of sleep, radiation, sleep etc etc begins and will continue for another 8 sessions excluding weekends.

Yesterday I spoke with Dr K and received the unfortunate news that Ben does not express HER2.  That was very disheartening to hear. I was really hopeful that we would hear something positive.  Dr. K will be reviewing some of the clinical trials that Barb has found and emailed to him, and he will let us know by next week if there is anything that Ben can participate in.  Fingers crossed.  That will mean all sorts of challenges depending on location of the trial, with regards to the kids etc.  I have no idea at this point if it means flying elsewhere and staying for several weeks or longer, or if it means flying back and forth – I’m not even going to speculate right now.  There is no point in guessing until we even know if any of them are suitable for Ben.

That is all I have.  The bottom line is that Ben is receiving treatment just for pain at this point.  So all prayers are welcome.

xo

Encounters of Another Kind

So I’m sitting outside of the BC Cancer Agency in Surrey, waiting for Wendy to pick me up. There were some other patients waiting for a ride, or just out for fresh air.
We are literally surround by no smoking signs when what do I see but a couple standing there smoking. A little closer look revealed that they were both likely recently cleaned up junkies. By recently cleaned up I meant someone had done their laundry. It made sense because there is a detox centre nearby.
No one else seemed interested in saying anything so I decided to speak up. I said “Excuse me but don’t you see all of the no smoking signs around here.” The male shrugged and kept chatting with his companion. So I continued “Why don’t you have a little respect for people here and go smoke somewhere else.” Then he spoke up and said “Well you don’t have to be so rude about it. My uncle or something died of cancer you know.”
I responded with “Well there are people here that may be dying of cancer, why don’t you have a little respect for them. You’re standing outside of the Cancer Agency for god’s sake. How stupid are you?
At that point he started walking away laughing and said “Well I hope you’re dying of cancer. Enjoy the time you have left fucker.”
I said “I will. But I won’t live my last days being someone like you.”
That’s when he got angry and said “Someone like me eh! Why don’t I go over there and kick your ass!”
“Because you’re a coward” I said.
“Oh yeah! Well you’re fucking ugly! Old man!” He continued to talk trash as he walked away.
I stood there wondering why his comments didn’t bother me so much. I think it’s because of all of the kindness I received over the past months. I reminded myself that there are a lot more nice people in the world than there are shitheads like that guy.
Finally my ride had arrived and it was time to go.

Sadness, Frustration, Breaking Points and Hypochondria

We had the appointment with the Radiology Oncologist today.  He is also a Dr ‘K’ so I won’t refer to him by name, lest you get mixed up between him and our medical oncologist.  He seemed like a nice guy and he appeared to know what he was doing, so I guess we’ll just go with that.  If we want Dr P again (who did the first bout of radiation on Ben) we would have to wait another week as he is away right now.  So we won’t wait.

The good news is simply the fact that he can do the radiation at all, because we weren’t sure if Ben could have any more. It will be done at Surrey Memorial which is more convenient for us then VGH.  Ten days, every day except for weekends and Ben starts on Wednesday. We expect it to cause fatigue again, but hopefully that will be about it.  Since Jeff (Ben’s special boyfriend … hahahahaha) is coming for a visit from the Great White North, he can snuggle up to Ben and keep him comfy while he sleeps off the effects.  Too be clear, the radiation is for pain only, not for cancer treatment.

While we were waiting for Ben’s appointment, I watched an older lady who was all alone standing at the appointment counter talking to the receptionist.  The lady did not know how to solve her problem of how to pay for the outrageous parking fees while she undergoes 17 days of radiation.  The receptionist wanted to help her, but couldn’t, obviously.  It is what it is.

My heart was broken while I “eavesdropped.”  People who have to go through this should not have to worry about how to pay to park when they arrive for treatment.  Little old ladies should not be alone while they are being treated for cancer, and they DEFINITELY shouldn’t have tears in their eyes while they try to solve the problem.  So unfair.

I gave her parking money for a month, and I don’t tell you that because I want anyone to think “Oh, that was nice of Wendy.”  I am definitely not looking for a pat on the back.  I tell you that because if I don’t you will all wonder how I could have possibly walked away from that without helping her.  Thats because there are good people who read this blog and since you all would have done it yourself (helped her, I mean), you would quite rightly be appalled to think that I did not.   Also, I want people to know how expensive that damn parking is.  Just keep it in mind if you’re ever around the cancer agency and you see someone scouring their wallet for parking money.   I don’t feel good about giving the little old lady parking money …. I feel sad beyond belief that she is in that situation in the first place.  The little old lady with the crooked wig and tears in her eyes.  Not fair.  I won’t forget her.

After meeting with the doctor and getting the plan worked out, Ben had to have another CT scan so they can use it to prep for the radiation treatment on Wednesday.

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Simulator 2.  Feels like he’s heading into outer space.

And then it was over.  We were on our way, and I walked up ahead of Ben to retrieve the car from the parking lot and drive back to get him so that he wouldn’t have to walk so far. I took a long time because (and here’s where the hypochondria part of this post kicks in) I was on the phone with my doctor’s office trying to get an appointment with my GP before he leaves for a vacation and doesn’t come back until December.  Why, you ask?  Because I have stupid, uncomfortable symptoms, and when I google them the first 30 hits or so are “Ovarian Cancer.”  Seriously?  I HATE being worried about my own health when Ben is going through this.  I hate it.  But it is damn scary going through all of this with three kids who are trying to muddle through it themselves, and having your own aches and pains that freak you out.  And to be clear, I don’t freak out if I have an elbow pain, or a headache, or a pain in my foot.  I am not that crazy.  But whats going on right now with me is enough to freak me out and send me off into a really dark place.  And then I obsess.

So I took longer then expected to get back to pick up Ben, and when I arrived he looked upset.  I’m not going to go into details, but lets just say that someone ( a stranger) said something horrible to Ben while he waited for me.  Completely inhuman, as a matter of fact.  And I, well, I was no where to be seen because I was off in my dark place obsessed with all possible horrifying things that could be wrong with me.

I do believe I’m almost at my breaking point.

Someone I admire loaned me this book

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I started reading it, and its comforting.  I’m going to go sink into a tub now and keep reading, and hope that somewhere in the next hour I can get my head back in the game.

The Good And The Bad

I haven’t been able to bring myself to write, since the last few days have been quite trying.  Ben mentioned some of it on his last post, but he glossed over the dirty bits.  Here it is with a little more clarity; the good and the bad.

As Ben mentioned, he was run through another PET scan last Tuesday, which looked a little something like this:

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On Wednesday we went back to find out the results.  As per usual, we took the entourage with us.  Ben even tried racing Mama-Moe down the hall on his crutches which was good for a few laughs.  Ben won the race but ended up in quite a bit of pain because of it.  Worth it though, since he smiled the whole way.

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Then we waited for Dr K….And waited some more…

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And while we waited, Beth sent me an email with her latest research on Collecting Duct Carcinoma which turned up two case studies involving two people who had presented with this disease, and were in extremely bad shape at the time of diagnosis.  It was determined that their primary tumour over expressed HER2, and therefore they received various medications along with a double HER2 blockade.  The patients then experienced a dramatic improvement and a progressive decline in the size of all the multiple cancer lesions.  Well, well, well.  This is when our prayer turns to “Please Dear God let Ben be one of those people who over express HER2.”

About that time Dr K appeared and ushered us all into the room where we received the less then desirable news that the PET scan revealed the cancer has spread into the muscle at the front of Ben’s leg.  Hence all the agonizing recent pain.

So we discussed what to do and where to go from here, and this is what he had to say:

  1. The results of the POG trial are still not back.  Those could be another 3 weeks.  So we wait.  Hopefully they will discover something behind that Door #2 that I mentioned in an earlier post.
  2. The other pathologist was not able to rewrite Ben’s diagnosis in order to fit him into a different clinical trial that offers drugs that are having promising effects on various types of cancer.  Ben does not qualify for the trial and cannot receive those drugs.   So that pretty much sucks.
  3. Dr. K offered Ben another drug called Sunitinib.  I mentioned in an earlier post that if #1 and #2 didn’t work, that Sunitinib would be offered.  After I wrote that post I did a bit of research on the drug, and noted that it comes with some nasty side effects.  Hasn’t Ben suffered enough?

We talked to Dr K about the side effects of the drug, and asked him what he hoped the drug would do for Ben.  Dr K said he hoped the drug would slow down or halt the cancer.  Then we asked what he expected the drug to do, and he said (in a nutshell) “nothing.” It was not expected to do anything positive because it is not meant for this type of cancer.  It was just another shot in the dark. Ben said “no thanks.”  I agree.  No thanks.

We then talked to Dr. K about the information that Beth had come up with.  He left the room to check and see if Ben’s tumour had been tested for HER2 and….. da da DA!  It has not been tested for that.  So now it will be.  We should have the results this week.  Please, please, PLEASE let Ben be one of the ones who over express HER2.  If he does, Dr K will be able to access the drugs used in the case reports and give them to Ben.  So there is hope again!!!  

However, there is still the matter of the insane amount of pain that Ben lives with.  Currently he takes so much medication that he sleeps about 18 hours a day.  Sometimes more.  Not even joking.  He wakes up in the morning, moves downstairs into the recliner where he pretty much remains until midnight when it is time to go back to bed.  Occasionally he tries to text and usually he falls asleep in the middle of it.  That is obviously no way to live – we have to find another way.

On Monday (tomorrow) we have an appointment with a radiologist to see if he can do some radiation for pain treatment in the area of the muscle that is causing all the pain.  If he is able to, Ben will start that on Wednesday.  Cross your fingers that he will be able to, because Ben needs some pain relief.  If he is able to get pain relief through radiation, then he can back off on the drugs and stay awake for longer periods of time.  (That would be good because I need some weather stripping put up!!!)

Lastly, the Insley Girls got together today over coffee and pedis and reviewed some of the research that Barb has done over the last few days.  Brilliant, Brainy, Beautiful Barbara came up with the idea of looking for clinical trials involving the use of the medications that Dr. K had hoped Ben could receive, but can’t because he was rejected from that clinical trial.  And…she found some.  Several, actually, and from reading the parameters of the trials it appears as though Collecting Duct is a qualifier.

Lets just take a moment here to LITERALLY THANK GOD for Barbara.  “Thank you God for our sister.”

Not that it matters too much, but none of the trials she found are local (hence the fact that Dr. K did not know about them), but rather they are out of country and also possibly in Toronto.  Which means we will go where the best chance is, even if it means leaving town.

Barb is emailing the trials to Dr K in the hopes that he can review them quickly and help Ben get into one of them IF it turns out that he doesn’t express HER2 and IF POG doesn’t turn up anything.  Time is definitely of the essence here and we are not going to sit around waiting.  Hopefully Dr K will respond this week – I am expecting him to contact us to let us know about the HER2 results, and will discuss the trials then.

Tonight we had some tough discussions with the kids about all that I have written here.  Those are difficult discussions to have – to tell your children that right now there is presently no treatment for Dad.  We explained that we still have hope, and that we will keep them updated.  We also explained that we don’t know what it will look like for us if we have to leave the province or country for treatment, especially as we near the holidays, but we will cross that bridge when we come to it.  Obviously they are all old enough to understand and agree that the priority is to exhaust everything we can find for treatment for their Dad, regardless where it is or when that might take place.

In the meantime we continue to juice and read about using food to heal cancer.  The time spent juicing is crazy – between hunting all over Surrey and Langley for the right organic vegetables and fruit (which are ridiculously expensive, I might add.  I pay $4.99 / cucumber, for example, and I go through several a day) and then preparing and juicing and cleaning … it takes up a good chunk of time each day trying to fit it in around the appointments.  So as much as I’d love to offer up the juice to guests – NO!   I told Ben he has got to stop overselling my juices on this blog, because I’ve had to go all Scrooge on about 5 of you so far and say “No, you cannot have the juice!”  But I can recommend a good juicer for you if you want to try it yourself.

Anyway, that is it for now.  We will be off to the radiologist tomorrow and hope for some pain reduction soon.  It will be so nice for Ben to be able to get out a bit.

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Hug your family. xox

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.

A New Week

We made it through the weekend.  It was rough.  The girls had volleyball tournaments in different cities (always fun trying to be in two places at once) and we were trying to manage Ben’s pain without having him end up in hospital.  So far, so good.

As you know from Ben’s previous post, the result of the lidocaine injection on Thursday was not favourable.  It ended up being a tough, tough night.

While Ben and Dad were at VGH getting the lidocaine injection, I was at home because of the parent / teacher interviews. Going to those alone was a big mistake …. I think I mentioned in my last post on Thursday that I was unable to make it through even one without dissolving into tears.  It was horribly embarrassing.  I kept my head down and tried to avoid eye contact with people I know as much as possible.

The entire weekend has exhausted me, so I am going to highlight it using photos.  Here we go:

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Jaime and Dawson “enjoying” my latest green juice concoction

Since the kids had half a day off because of the parent / teacher interviews, I figured that the least they could do was test my juices.  This green one went over better then the last one.  I am liking Dawson better then Jaime right now, because he never complains.  She whines about the juice like a baby.  LOL.

Anyway, I went to the interviews and followed that up with some yoga with this lovely girl:

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I think I enjoyed the class a bit more then Raegan, but at least she was willing to keep me company.

Yoga was followed up with what I now refer to as “The Thursday Night Nightmare”.  That was the night of unbearable pain that Ben suffered through.  I’m not revisiting that story.  And now that I think about it, yoga may not have even been on Thursday. I can’t seem to keep my days and times straight anymore … you’ll have to forgive me if I have them mixed up.

On Friday we just muddled through the after effects of Thursday night.  I prefer not to think about it.  But in the evening Jaime had a volleyball tournament and I managed to catch one game.  When I got to the school where she was playing I saw this poster:

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It was timely.  We are hanging on.

On Friday we were contacted twice by Dr. H who had things set up at the hospital for Ben over the weekend, “just incase”. Understandably, Ben did not want to go.  He’s had enough of hospitals and I don’t blame him.  We both know that he will likely need to move on to one of the other procedures that the doctors have discussed to help with the pain (one is a walking epidural which is another surgery and a week in hospital, and the other is severing some nerves which sounds scary) but right now he just wants a break.  So instead he decided to treat the pain with meds and just try to have an enjoyable weekend – as much as he was able.

And since he was not in hospital, he was able to get this beauty:

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Ben and his brand new guitar!  Woo hoo!

And then, THIS boy came home after work to have a visit with his Dad:

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All in all, Friday was much improved over Thursday.

On Saturday the girls both continued their volleyball tournaments, but I went to Coquitlam to watch Raegan play since I had watched Jaime the night before.  (Also, Colleen lives in Coquitlam so she met me at the game and then took me on a hunt for crutches for Ben.  It took awhile, but we finally found them. Its not easy to find crutches built for someone 6’2″)

By the end of Saturday, Raegan’s team had won the entire tournament!  I was gone for quite awhile on Saturday, but Ben had two friends pay him a visit during the day to keep him company.  Stephan (Ben’s troop mate) came by for a visit, and then Kirby came by in the afternoon.  I know Ben enjoyed his visits with both of them.  He got to show off his sexy new guitar – always an added bonus.

The only downside to Saturday was that Ben was too tired to come out to Mom and Dad’s to celebrate Barb’s birthday.  I went, and before coming home Dad whipped up a steak for Ben and sent it home with me so Ben could enjoy a nice meal too.  An extra special treat as we do not eat red meat anymore, and it has been months since Ben has had steak.

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(Happy Birthday Barb!)

Since Uncle Ben couldn’t make it, there was an awesome video sent to him by Makeda, but apparently I cannot post it on this blog until I upgrade and start paying.  So I’ll save that video for another time, along with Uncle Ben’s video response to her.

In any case, we start our new week tomorrow – one day ‘off’ and then back into the appointments on Tuesday, which begin with a PET scan.

I came across this photo from about 1995.  The outfits may be horrible, but the joy is real and still remains today:

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There is no one I’d rather dance on a beach with.

We will update as we can.

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Thank you for the continued texts and calls to Ben.  They remind him how loved he is.  And he is.

Hug your families. xo

Music, Layaways and a Little Something Else

I have so much to say I don’t know where to start. So I guess I’ll just start here…

I became aware of another band coming to Vancouver that I’ve always wanted to see in concert. I enjoy their music but I’m certainly not a superfan. From what I’ve heard, their concerts are full of props and theatrics and are just great fun, so I set upon the journey to acquire tickets.

I didn’t want to get shut out of the whole ticket purchasing process by the scalpers so I decided to find out if the band had a fan club which I could join. Sure enough, they did. So I dug out my credit card and paid their fan club fee of 30 GBP (Yes, the Queens money). Then I sought out their fan club pre-sale section and learned that the fan club could purchase tickets a clear 3 days before the general public and that fan club ticket sales opened on October 14th at 10AM. That was kind of shitty news because I knew that I would be at the Cancer Agency meeting with Dr K and getting “news”. That whole day unfolded slowly so it wasn’t until about 5PM that I was able to sit down and search for fan club tickets. Anyways, I managed to get tickets right beside the stage, 17 rows up. They look pretty awesome but we’ll see on concert night! Oh yeah, I forgot to mention that the band was Iron Maiden…

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Next is a recent purchase (layaway actually). I often stop into my local Long & McQuade music store to check out their guitars and buy strings and things. Well last Monday a particular guitar caught my eye. It was a Gretsch G5620T in blue. I normally don’t care for Gretsch guitars because of their neck profiles, but this one was different. It felt really good in my hand and was very resonant. I don’t normally buy new gear. I stick to used because you get good gear for half the price. So I hung it back up and left the store.

I came back on Wednesday because I had forgotten to buy strings on Monday – probably from being distracted by that Gretsch. I picked up my strings and had another look at the Gretsch before leaving the store.

After humming and hawing for the evening, and recalling a time where I wanted a particular guitar at Long & McQuade but waited a day too long and being told that someone had literally just left the store with it, I decided to put the Gretsch on layaway. I have a separate bank account that I use for buying and selling guitar stuff. I usually make money on gear and as it accumulates, I decide on what I want to buy. Basically, it’s separate from our family finances and I have an agreement with Wendy that I would only spend my guitar money when I want something. I didn’t have enough money in it to buy the guitar but I currently have a bunch of stuff for sale, so I was confident I could pay for the guitar in short order – as my items sold. So I drove over to Long & McQuade, found my favorite salesman and asked him to put the Gretsch on layaway for me. Unfortunately, I couldn’t find a stock picture in blue. Mine is blue.

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And now for some not so good news. I’m not sure if Wendy had mentioned an experimental procedure that BCCA was currently studying that involved a lidocaine infusion. Anyways, long story short, they attach an IV and infuse the patient with a bag of premixed lidocaine – the same stuff Dentist’s use to freeze your mouth. In this case the thought is that the lidocaine would provide a general anesthetic-like effect on the affected nerves, and the patient would get relief for weeks if not months.

Well sign me up! I can only dream of being pain free for any extended period of time. So I was scheduled for yesterday, October 15th at 10AM. I made it to my appointment on time and got set up for my treatment. Rob was there to drive me home after the procedure. Apparently, there was a chance that I may feel numb and disoriented along with some other temporary side effects. He showed up at 10AM expecting, like me, that the procedure would happen in short order. But…There were a number of delays one of which was a blood test that hadn’t been done. I guess they needed to check my potassium levels before the infusion. Why? I have no idea. Then they had to line up a pharmacist to brew up the mixture and a nurse who could check my vital every 10 or 15 minutes. They managed to get all of that done by about 1 or 2 PM and then the infusion finally started. I got to spend most of the day with my favorite father-in-law. Out of all of my fathers-in-law, he’s the best.

So the infusion was finally finished. My tongue felt a little tingly, my mouth didn’t want to work properly and I slurred like a drunk. Probably not as bad but close. The nerve pain in my leg was gone and I could only feel the muscular pain of unknown origin that has been haunting me for several days, maybe even a couple of weeks.

I met with Dr H who went over my symptoms with me as well as what I could do for the muscle pain until that one is figured out. She was happy about the nerve pain resolution in my leg but didn’t come across as confident that the procedure was a success. I was advised of two other procedures that could be done (won’t bore you with those) and then I was released. Besides feeling kind of drunk, I felt pretty good.

Until about 7PM. That’s when the new pain started. I was sitting down playing the guitar in the living room and Wendy was trying to surreptitiously record me in action. We had a we bit of an argument over this when it felt like my foot caught fire. Yup, that’s what I said. Hurt like a son of a bitch. Then the pain extended to my knee and ass. I quickly shut everything down and “ran” into the family where I asked Wendy to wrap my foot in ice. The I needed another ice pack for the muscular pain in my upper leg as well as my burning ass.

It was a bit of a gong show until Wendy and I managed me upstairs into out bed and wrap me up in a combination of ice packs, comforters and an electric blanket. I was shivering, my foot was on fire, my ass was on fire, the muscles in the upper leg were in spasm and screaming in pain. Then I just lost my mind. It was too much. I didn’t know what to do, Wendy didn’t know what to do and I was in so much pain I was losing my mind. That’s when the self-pity and crying came. Let’s not forget anger. I knew it was the wrong place to go but at this point I just wanted to die. It’s bad enough that I have cancer, but do I have to be in so much pain all of the time? Do I have to be robbed of sleep every night? Do I have to be prevented from enjoying the one hobby that I have? I can’t even sit down for more than 20 minutes or so to play the instrument that I love playing. I was caught in a whirlwind of pain, anger and self-pity. I eventually took enough hydromorphone to pass out for an hour or so. And continued to do so every two hours as per the Drs orders.

I woke up this morning still in pain, but the normal stuff that I felt before I went into the BCCA for the lidocaine procedure. The muscular pain is still very painful, but at least I’m not on fire anymore.

That experience took a lot out of me and brought me to a pain threshold that I don’t want to experience again. Today I am tired and sad. I hope to continue recuperating and eventually put a smile back on my face. But right now, it’s too much to ask.