Almost Had Some Down Time…

I thought we may actually escape with an uneventful week, but apparently that was not to be.

I believe I glossed over the worst parts in my last post, including the fact that Ben struggles to walk.  This is something that came on in the hospital but we assumed it would pass.  It has not, and seems to have gotten worse.  He also continues to be exhausted and thoroughly drained of all energy.  This is a cruel disease.

Saturday night seemed fairly tame, however, and Ben was sleeping when I left to pick Jaime up from work.  She literally called for a pick up about 30 seconds after I had just taken a sleeping pill, so I madly dashed off to get her before the effect of the pill hit me.  Jaime was happy and we chatted on the way home, and I went right off to sleep.

I’m still not exactly sure what happened, but a case of the “sads” obviously hit Jaime as soon as I fell asleep, and I was awoken by her crying by our bed.  I had no sooner made room for her in between us when the worst pain imaginable struck Ben.  I can’t even describe it – it was worse then anything that I have mentioned before.  And believe me, there has been some bad pain.

This time it had nothing to do with his right side.  The cordotomy was a success and he cannot feel pain on the right.  This was all in his sacrum and it lasted for about 8 hours.  It definitely warranted a trip to the hospital but I could not bring myself to force him back there when he had just made it home.  And so we all cried, all night, until finally it passed and Ben fell asleep and slept for the entire day.  Sweet relief for him.

On Sunday Dad and Kirby moved the recliner upstairs to our bedroom for Ben, so that he has the option of the chair or bed and the bathroom is there too.  I bought a second recliner on Monday (to be delivered tomorrow) to be put in the family room, so that Ben also has a place to sit downstairs when we have to go for appointments and he needs a break before going back upstairs.  Mainly his “suite” is now our bedroom, and we have set it up with two extra chairs for guests.  Its a bit strange, having visitors in our bedroom, but it works out better for Ben.  Connie and Kirby came by for a visit last night and I’m sure the neighbourhood would be abuzz with gossip if they knew that another couple joined us in our bedroom with wine.  Lol.  I didn’t take pictures.  Haha.

Today we went back to VGH to meet with the doctor at the pain clinic.  We had to take the wheelchair, which Ben hates.  To make a long story short, the doctor is ordering an urgent MRI tomorrow to see if this effin’ disease has crept into Ben’s spine and is causing his weakness.  There was more discussion of radiation and blah blah blah.  After awhile we both want to scream “STOP!”  How much more is Ben supposed to endure?

Our drive home was, well, sad.  We talked about the possibility of the worst outcome, and how to talk to the kids.  And how it sucks that this is happening at Christmas, or at all.  And we cried.  And cried.  And cried some more.  And then we laughed a bit and picked up sushi (for Ben, not me.  I think its gross.)

We went home and Mom and Dad came over and joined Ben and Raegan for the evening while I went off to spill my guts to the psychologist and hope that this time he might have figured out a way to solve this problem. He hasn’t.  But the four of them enjoyed themselves while I was gone – talking and laughing until Ben fell asleep again.

That is where we stand for now, waiting for another MRI that Ben will have to endure (he is extremely claustrophobic) and more potentially devastating news.  In the meantime I am going to go and crawl into bed with My Love and snuggle him tightly, and hopefully dream about better days.

Wendy xo

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.

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.

Sadness … Go Away

I am sitting in Starbucks, writing this on my phone while Ben sits at home.  Alone and in the dark, because our power is out.  Our phones aren’t working at all, and Starbucks provides wifi so I came here to find out what the internet says about the power coming back.

Instead of going on the Hydro website, I sat down, took one look around and promptly burst into tears.  So many people smiling and chatting.  Such normal lives.  This is so embarrassing, but I am just so sad.  I can’t seem to stop.

Half the town is in here – they probably all think I was just dumped.  I look like someone who has just been dumped.  And my hair looks awful (I just caught a glimpse of my reflection).  Everyone is probably thinking “if only she had put a little effort in with that hair…she may not have been dumped.”  Ha.

I don’t like telling people I’m sad.  Especially my family.  I know they are suffering their own horribly broken hearts right now, which makes me feel so much worse.   I do not want to add to their pain.  If I could individually block them from this one post, I would.

Ben, Mom, Dad, Barb, Lisa …..I’m sorry.  I’m so sorry.  I will regret posting this, I’m sure. I just can’t help it.  I’m. Just. So. Sad.  For the moment.

Ok.  That’s enough. I have cleaned up my face and even fixed my hair a little.  Crying time is over.  I will go home now and talk to Ben about how we can enjoy our day tomorrow.  Perhaps we can pull the hair out of the drains.  Nothing says love like working together to unclog the drains.

To my family – that was just a moment.  It’s over now.  I’m ok.  Nothing a hug from Ben and a big glass of wine won’t fix!  I will go get both right now. 🙂

Ben – don’t you dare complain about me being sad and posting about it.  I know you don’t like me to be sad.  It was just a moment.  I’m over it.  If you need me to prove it, I will come home and list a few things about you that still annoy me.  You are still not perfect.  Me, on the other hand….well….

😉

Hug your families.  Xo

Wendy