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 🙂

40 hours in LA

Our 21st anniversary trip began at around 8pm when Wendy, my favourite in-laws and I arrived at LAX in Los Angeles. Just to be clear, only Wendy and I had an anniversary. And just to be clear again, Lisa would have been included in the favourite in-law thingy but she chose to stay home and teach school instead. Lets move on. I secured our rental vehicle using some kind of ATM machine at Alamo car rentals and off we went to explore the streets of LA.

Luckily I had the forethought to bring my GPS (and consequently saved us $14.95USD per day!). We arrived at the hotel without incident (ok maybe a few u-turns but that’s no big deal) settled in and went out for diner at a nearby restaurant.

The next day Maureen, Barb, Wendy and I went out exploring. Rob stayed back at the hotel to nurse his horrible cold. He was in rough shape. Maureen and Barb went shopping in Little Ethiopia and Wendy and I went to the mall. Yes, I said that right. We went to the mall. We weren’t there very long. Wendy wanted to pick up some clothes for the concert. I thought well why didn’t you pack some clothes and it turned out she did but they just weren’t good enough. Okay, I’m kidding a bit. Wendy wanted to pick up a skirt and pants she had tried on in Bellingham the week before. That store happened to be relatively close so we got it done.

Once we were done at the mall, we checked out the area around the El Rey theatre. I wanted to see what the parking situation was like. It looked good, as long as we got there exactly at 7pm – when parking was allowed on Wiltshire Blvd. We then went and picked up Barb and Maureen in Little Ethiopia. It turns out their shopping excursion was a bust. Barb suggested we head to a little restaurant in Santa Monica, so off we went.

We ended up having lunch at a fancy little hotel restaurant on the beach. Barb and I had some yummy fish tacos and fries. Wendy had soup and Maureen had a gallon of wine. Just kidding. I can’t remember if she ate anything. Lol.

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After lunch we took a stroll in the heat and walked to the pier where, as it turns out, it is the end of Route 66. Kinda cool.

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It turns out that Barb had an ulterior motive for going to the Santa Monica pier. She is a huge fan of the Sharknado movies and was hoping to pick-up some kind of movie memorabilia on the pier. She was shit out of luck. The only thing resembling Sharknado memorabilia was a little shovel with a sharks face on it. After grabbing some obligatory ice cream and milkshakes We then made our way back to the hotel through the crushing LA traffic – and I thought Vancouver traffic was bad. Holy shit. Anyways, we finally made it.

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We should have had enough time to freshen up and head to the concert venue but…The best laid plans…….. Despite my plan to arrive at exactly 7pm to take advantage of free parking, it didn’t work out that way. Only three people were ready on time. I won’t mention any names, Wendy and Barb, but it threw a little wrench in my plan. We were only 20 minutes late but there was no parking to be found. We ended up taking advantage of the valet parking service at the venue.

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Thanks to Wendy, we managed to get VIP passes and reserved seating for the venue. Yay!!! I will let Wendy explain the details behind that. There was a little Mexican restaurant attached to the El Rey theatre. I decided to take advantage of that and had 4 more delicious tacos for dinner – 2 chicken, 1 beef, 1 shrimp. They were awesome! We sat at our table and waiting for the show to begin.

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The opening act, Hunter Sharpe, started their set at around 8:00pm. They were surprisingly pretty decent. The band was tight. They played what I can only describe as a cross between Texas blues and Seattle grunge. I liked it. It turns out that their regular guitarist, who happens to be Charlie Sexton’s son, recently broke his wrist so they had to find a quick replacement. Luckily they did. It looked like the kid hadn’t eaten in years but he could sure play the guitar and was able to bounce around the stage along with everyone else, so I guess he wasn’t that hungry. I only mention Charlie Sexton because he was Doyle Bramhall II’s partner in the Arc Angels – a band that was kind of big in the early 90’s.

Finally, the main event.

Once Hunter Sharpe’s equipment was removed from the stage, Doyle Bramhall II and his band started their set. He started off with I Wanna Be, a classic from his album Jellycream. It was great and kept getting better from there. He played a bunch of my favourite songs as well as 4 new ones. I sang along with every song and just made up words for the new ones! At one point during one of the songs, Doyle let the second guitarist take the guitar solo. The guy was just ripping it up and playing his heart out. The problem is, he was in the wrong key and it sounded horrible!! (At least to me, I don’t think Barb, Maureen, Wendy or Rob even noticed). Anyways, Doyle kept playing rhythm on the other side of the stage and was trying to get the guys attention. At one point, it sounded soooo bad that Doyle just started laughing. He finally got his attention and took over the main guitar part. I thought it was pretty funny. Anyways, the show went on without a hitch and it was just fantastic. It was made even better with the VIP experience. Thanks to Wendy.

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Once the show was over, we started to get herded towards the doors. I can’t remember how, but we found out that Doyle was going to come out and do a bit of a meet and greet with the fans. So we stuck around. Sure enough, Doyle came out and started shaking hands and taking pictures with people. Soon it was our turn. Wendy explained who she was and introduced me. I chatted with him briefly and had my picture taken. He then said that he had to continue the meet and greet but would like us to stick around so he could talk some more. How cool is that!! So we did.

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While we were waiting I did my normal thing and checked out everyone in the crowd. Well to my surprise I spotted one of my favourite comedians and host of the podcasts The Bryan Callen Show and The Fighter and The Kid. His name, of course, is Bryan Callen. Duh. I walked over to him and introduced myself. We talked and joked around for a bit. One of his friends, Anthony Tambakis (the guy who wrote the movie The Warrior), was calling for him. Callen responded “Hey! Gimme a minute. I’m being recognized here!” We had a good laugh at that. I got my picture taken with him and chatted a bit more. He was just as genuine as he comes across on his podcast. He couldn’t have been a nicer guy.

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When Doyle was all done, he got snagged by Rob who asked him to sign our “Table reserved for” sheet. It was a nice 21st anniversary gift. Thanks Rob! Doyle then came over to us and I got to chat with him a bunch more. It was awesome. What a night. I was so happy I got to see him live and then meet him. Wow.

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We got back to the hotel safely, took a bit of a nap (my back and leg were so sore, I barely slept at all) had breakfast and set off for the airport. That was our 40hrs in LA in a nutshell.

Sometimes I Wake Up Sad

I wrote the title of this blog post and then stared at my computer for 10 minutes without touching a key.  Sometimes I Wake Up Sad.  Its true.  Sometimes I do.

Today it was because I sat up and found myself staring into the open eyes of my Beloved.  When I asked why he was awake, he said it was because he had tried to adjust his sleeping position and found himself in pain which woke him.  What does one say to that, when the person they love most hurts?  It wasn’t that horrible, intense pain, but it is a constant reminder of the reality of the situation and yet another opportunity for cancer to break my heart.

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I came downstairs to chat with my beautiful girls before I drove them to school, and Raegan did a quick double take and asked me if I was ok.  I smiled and shook my head and said “Of course I’m fine.  My eyes are watery today.  No idea why.  Must be allergies.”  She looked skeptical.  In moments like that I think of Beth saying to me, “When my Dad passed away we always looked to my Mom.  If Mom was ok, then we were ok.”  I try to be ok.

Tomorrow we leave for a 40 hour trip to LA to celebrate our TWENTY FIRST wedding anniversary ….

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…. and to enjoy an up close and personal concert with none other then (then? than?) Doyle Bramhall II!

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I wonder if he’ll let me touch his hair?!  Maybe that’s too weird and a bit stalker-ish.  If not, maybe Barb can work her magic and get him to dump Renee Zellweger for her.  He could end up as Ben’s (and my) new brother in law.  Barb … make sure you wear something hot to the show. Do not waste this opportunity you have been handed to provide Ben with a life time of jamming with Doyle, and me with a lifetime of being around that hair!

**Side note** Incase my life is ever made into a movie and Doyle Bramhall II or Renee Zellweger read this blog, I should make it clear that I’m not REALLY sending my sister in to try to break up their romance.  That was just a joke.  But I do want to touch his hair.

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This would be a full Griswold Insley Family Vacation if only Lisa hadn’t chosen to be a teacher, thereby preventing her from skipping town in the middle of a work week to head to LA.  Having said that, since she is happily married to the Love of Her Life, she would be useless to me anyway.  On another positive note, travelling with Mom and Dad may give us access to senior discounts.

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In addition to our quick but awesome celebration this week, today we will have running boards put onto our Ben’s truck. Wahoo!  I will finally be able to climb up into the truck like a civilized person without having to grab on with both hands and draw on past childhood gymnastics abilities to swing up into it.  This is a picture of us on our way to order the running boards yesterday:

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So on that note, I will bid you all adieu and go attend to My Love who has just come downstairs and is suffering with nerve pain that is worse now that he is up and about.  Lets hope that the nerve block is not wearing off before our trip.  That would just be too f**king cruel for words.

Watching him in pain right now and helpless to do anything …. that is why I sometimes wake up sad.

***UPDATE** Just got off the phone with the Pain Clinic who have called in some new RX’s and messed with his meds a bit.  Fingers crossed

Nerve Block – Round 2

Here’s the update on the second nerve block. It was a sunny Wednesday afternoon when I visited the bowels of the Vancouver General Hospital….blah blah blah. Fast forward.

So we checked in for my appointment, which they had me squeezed in for at 2pm. We waited patiently, staring at our respective iPhones like typical modern day humans. When that got boring I started making fun of people to make Wendy laugh. It worked. It was like the good old times. You know, before smartphones, when people used to talk to each other in waiting rooms.

Anyways, we were informed that there would be a delay, due to an in-patient emergency (there’s always someone whining, they just happened to be checked-in so they get priority). I wanted to say, “Oh yeah?! My pain is at a 9.5!! How do you like them apples!”. But I didn’t. I let the in-house whiner get their turn before me. Turns out, the delay would be 2 to 2.5 hours! Luckily I managed to get a stretcher and a couple of pillows, which allowed me to find a comfortable waiting position.

Finally, Dr Radu, Dr Pennycooke and Dr Indian Guy (whose name I can’t remember) arrived to update me. Dr Indian Guy informed us that he is the guy they call when things are complicated or unusual. Now, that sounded a little egotistical but he was a pretty good guy, so I let it slide. Seriously, he was really nice. Anyways, he said that the procedure would be relatively easy and I should feel relief within seconds of the anesthetic injection. The steroid injection may take a few days to kick in. So I may feel some discomfort for a couple of days. I was ok with that, signed the consent form and saluted all three (or shook their hands, I can’t recall).

I was rolled into the CT Scan room because it turned out that the x-ray table they were planning on using was not available (because of the whiner) so they opted to use the CT Scan which as it was explained, would work just fine. I was then put on the CT Scan bed and powered into the machine while lying on my stomach. Did I mention that the worse position I could be in pain wise was lying on my stomach. Oh yeah, it sucked. I was lying there for about 10 minutes while the Drs presumably discussed my procedure (or the last Whitecaps games who really knows – although they seemed pretty professional so I’m guessing my procedure) before I almost lost my mind. I began reaching in front of me, hoping to latch onto something so I could pull myself out of the machine. Did I mention the pain was a 10 out of 10. It was ridiculous. I was shaking and broke out into a sweat because I just couldn’t take it anymore. Dr Indian Guy rushed into the room, apologized, consoled me and allowed me to change position for the procedure (I told you he was cool, right). Now that the pain was at an 8, I was waaaaaaay more comfortable (sarcasm) and was ready for the procedure. It didn’t take long for the pain to reach a 10 again, but luckily they were all gloved up with needles in hand.

Dr Indian Guy was right, after the first couple of anesthetic injections, I did get some pain relief. Dropped down to a 5, actually, which made the rest of the procedure go a little more smoothly. It took them about 15 minutes to complete the procedure which involved anesthetic and steroid injections with several visits to the CT Scan monitors to make sure the needles with in the right place. Finally it was done and they wheeled me out.

After they checked to see how well the nerve block had worked, Dr Indian Guy told me that the procedure was unusual because my tumor seems to be growing and pushing through the holes through which the nerves travel. They couldn’t inject the steroid directly into the holes because much of it would have been absorbed by the tumor. So they injected a stronger steroid solution in the immediate areas in the hopes that it would have a similar effect as a “normal” procedure. If the procedure worked I could expect the relief to last from 1 day to a few months. There are too many unknowns. Time will tell.

Wendy and I thanked them all profusely and we got up to go home. Well, funny thing is, my ass muscles were 100% numb. Could not feel them at all. They are a very important muscle for movement and I had no control over them. Needless to say our walk back to the car was kind of awkward, but we finally made it. The feeling returned within a few hours and everything was fine.

Well, it’s been 3 days so far and while I am not 100% pain free, it has been significantly reduced. Things flair up when I do too much (walking, standing, chores around the house – that’s my excuse) so I have to limit that. But compared to before the procedure, I am relatively pain free. For now.

We both remember it’s temporary. But everyday it lasts, is a great day.

Chemo – Round 2.5

This will not be my most thoughtful or amusing post.  Quite frankly, I’m not in the mood to write and I am not feeling particularly inspired.  I can barely tolerate watching Ben next to me in so much pain, so I plan on occupying myself (when I am finished writing) by preparing Ben’s post chemo meal for tonight.  It is a trick to get just the right food in him after chemo before the nausea and vomiting begin.

As Ben mentioned in a previous post, he had the cementoplasty on Sept 9th.  His post was funny and made everyone laugh, but the pain he was in at the time was not funny at all.  A solid 10 out of 10 for pain by the time they were preparing the room for the surgery that morning.  The nurse did administer a narcotic directly into the IV for pain, and it worked for approximately 9 minutes.  Not joking.  In less then 10 minutes he was at a 7 out of 10 for pain again.

The day was horrifying, because the two hour procedure turned into hours and hours with zero communication.  As usual, Barb came down to the hospital to sit with me but was eventually required back at her office and we still didn’t have any information beyond the fact that we were reasonably certain he was alive.  Always good to know.

I finally pushed hard for answers in the evening and was allowed down into the recovery area.  I guess they kept Ben there (where family is not allowed) because every time they took him off of the oxygen his numbers dropped.  Also, Dr Radu wanted him kept overnight and so there was that whole disagreement between VGH and the Cancer Agency.  At the end of the day, as you know, Ben came home.

Within 15 hours of the procedure, Ben was back at a 7 out of 10 for pain, and it hasn’t really eased much since. As I type this, he is suffering.

I have spoken twice with Dr Radu.  He is working hard at getting Ben back in for a more selective nerve block.  The poor guy (Dr Radu) is clearly run off his feet and I have a very strong feeling that he will be doing Ben’s nerve block on his own time. They are booked solid.  He is doing everything he can to have this nerve block done before we leave on the 23rd.  I emailed him my appreciation.  If I was his mother (Dr Radu’s mother) I would tell him “You can’t save the world and you need your rest too.”  As Ben’s wife I say “Thank you from the bottom of my heart for giving up your own personal life for the care of others.”

Yesterday Ben had a biopsy on his liver.  First step in the POG trial.  The procedure was not fun for Ben and has added to his pain.  I am praying that they now may find the answers they need to help Ben.  While he was recovering from that I hounded the poor receptionist to put notes on Ben’s file to push for a more urgent CT scan.  Ben was supposed to have a CT scan between round two and round three of chemo, so a determination could be made regarding whether or not this poison is holding off the disease.  Unfortunately, summer holidays and the number of people lugging this disease around in their bodies prevented that from happening.  The lovely receptionist has asked, at my request, that Ben be squeezed in for a CT before we leave for LA, so that the results are there when we get back.  We’ll see.  We probably won’t find out the results anyway until we meet again with Dr K, which won’t be until next month.  So in hindsight, its probably not all that urgent.

In the meantime, today is round 3 of chemo.  Well, more like round 2.5 because he is only having one dose instead of two.  Two doses would have made it impossible to go to LA.  So one dose it is this time.  One dose is bad enough.  We plan on attacking it with every anti nausea med we have.  Ben has agreed to try to keep it at bay so it doesn’t overtake him.

Despite the pain, we did manage to attend a most delicious meal at Mom and Dad’s.  A send off of sorts for Zak who was heading out of town to work for two weeks.  You will note there were a couple of boyfriends along for the ride..

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I kind of caught everyone off guard here – especially the two cranky looking ones on the left.

One last thought that I did want to write on here so everyone is aware.  Flu season is around the corner.  By mid October I really don’t want to have anyone in the house if they haven’t had their flu shot.   Thanks in advance for your consideration. If you don’t want to be immunized, no problem.  Just be upfront and honest – I will meet you elsewhere for coffee etc.

And on that note I must go buy some chicken before heading back downtown for chemo.  #prayersforben

On the day I called, you answered me; my strength of soul you increased.  Psalm 138:3

POST SCRIPT: After I signed off on this post, the Pain and Symptom Management nurse called me. After explaining how much pain Ben is in, she asked us to come down to the Cancer Agency immediately before chemo. So here we are right now, waiting for the doctor. Hopefully they can figure something out before chemo.

Also…I was unsuccessful in my quest to pick up chicken. In fact, when I got to the local grocery store and discovered that the chicken I wanted wasn’t there, I promptly burst into tears. Doesn’t everyone cry over a lack of chicken? Thanks for the hug, Linda. You should have seen the look on your face when I started crying. If I hadn’t been so upset I would have laughed.

POST POST SCRIPT:  We received the call.  Second try at nerve block happening TOMORROW!  God bless Dr. Radu.

Foo Fighters!

I just got back from the Foo Fighters concert in Vancouver. Wow, what a great show and I got to see Gary Clark Jr. who opened for them. I had tickets to see a Gary Clark Jr. show a couple of years ago but I missed it because of work so it was a bonus to learn that Gary Clark Jr. would be opening for the Foo Fighters starting with the Vancouver show.

I wasn’t sure I would be going to the concert because of the amount of pain I was in but things leveled off today and I managed to get it somewhat under control with meds. So I made it, albeit hobbling, and had to have Zak throw up blocks behind me so people wouldn’t bump into me. It worked out just fine and we had a few laughs over it.

Gary Clark Jr. was pretty awesome. He ripped on his guitar, which was drenched in familiar fuzz. He sounded awesome.

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There were a couple of let downs though. First off, we had shitty seats for this concert. They would have been great seats if everyone had remained seated. But no one sits at a Foo Fighters concert. So I had an idiot across from me (and in my way) who was probably the Foo Fighters #1 fan. He stood the whole time, blocking my view of the stage and jumped around like a fucking moron all night – as if he was talking directly to Dave Grohl (lead singer) and that Grohl could actually hear him. Imagine one of those annoying #1 fans from a movie or TV show and it was that guy! I was ready to beat him down with a stick but instead I stood for certain songs and tried to see through this idiot’s flailing arms for others.

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Overall it worked out just fine. I stood for my favourite songs and didn’t really miss too much. The band played a lot of my favourites. Almost all of them. I had one minor embarrassing moment – I actually burst into tears (heavy flow) during one of their songs. Luckily, due to our positioning, Zak didn’t see me and everyone else was watching the concert. The song was “Walk” from the Wasting Light album. There is a passage in the song that struck home pretty hard. I knew it was coming and could feel the tears and emotions spike as it drew near. Grohl sang the passage with as much force as he did on the album. It was great. For those of you who are familiar with it or have the song, it starts at around the 2:45 mark. Love that song.

They played for almost 3 hours straight and peppered their performance with renditions of some famous Canadian songs like “Summer of 69”, “Cinnamon Girl” as well as “Under Pressure” by Queen and a partial Van Halen song or two. It was a typical Foo Fighters concert (from what I’ve read) and Grohl pre-warned everyone that the Foo Fighters did not do encores. He said “we are not going to pretend to leave the stage and wait until you clap loud enough to bring us back. Fuck that. We will just keep playing until they tell us to leave. How’s that!!” To which everyone responded with a roar and they broke into another song.

Zak and I had a great time and I picked up yet another t-shirt!

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