Reduced

I’m trying to get into the right mindset to write tonight. I’m feeling very tired from the trip in to see my clinical trials nurse and oncologist in Saskatoon. When I go it seems there is a slow drip of information that comes from these meetings and thing is. It takes me forever to wrap my head around what is really going on and it is an effort on my part to process all of this stuff.

No CT scan this time so it was more of a how are you feeling kind of visit. But, one thing I learned today is that for the past while my white cell count and other blood stuff has been quite low. Ok, that I knew but what they’ve been doing is reducing the amount of chemo drugs I’ve been getting during each session. I remember hearing the chemo nurses talking about a reduced amount of drugs, but I didn’t think anything of it. This all makes sense as I haven’t been having bad reactions to the treatments.  The treatments just haven’t been as hard on me.

Even though the good drugs have been watered down a tad, everyone agreed that I’ve had a lot of chemo. Depending on the next set of blood tests, I will start cycle 10 or my 27^th chemo treatment on Friday. That’s a lot of chemotherapy! Or, we stop and my part of the clinical trial will end and this will be when we try something else, something new.

I am looking at changing things and trying medical marijuana. But the thing is the drug program I’m on now is working. I would need a good reason to change other than “change” and ending chemo might do it, maybe. The thing to remember is that I am receiving palliative care so the main focus is on my comfort, not trying to cure me.

For one, I am leery of changing this as the drugs are taking care of my nausea. I don’t know how to describe nausea caused by the cancer other than it is the worst symptom I deal with. Just horrible and I wouldn’t wish it on anyone. The pancreatic enzymes and anti-nausea pills are what is keeping me going. So to give one up to try something else is a big deal.

Not sure if Rob the pot head experimenting with drugs is the best way to go, maybe it is. Who knows at this point, no one there expected me to finish cycle 9 of this clinical trial so we are approaching new ground.  That and it would be so much fun showing up at the museum with a plate of brownies at coffee time.

Anyways, lots to think about and I could write a book on the opiates vs pot vs chemo debate from the MCS community. Maybe this weekend I’ll try and comment on it.

As my friend Sharon used to say, life is good

Thankful

Yesterday was a long day, chemo days always are it seems. I wasn’t as sleepy as I often am while I was in the chair. So it gave me time to think about random, whatever things. I do that; when it’s switched on, my brain is always in explore mode. It may not be the right mode to be in, but at least it’s in a mode.

On facebook I received some positive feedback on a post about the ten month deadline of my six to ten months to live. A guess from the oncologist and that was about ten months ago, give or take a few weeks/days. I don’t recall when the exact date is, but we’re close to it. When the six month deadline went by I was pretty happy to see it go, it was a big day for me, a nice accomplishment. But after giving it some thought I’ve decided this ten month day or date really doesn’t mean that much to me.

I understand it’s an important milestone, but I don’t spend a lot of time thinking about it. In my mind I’m already long past the big day and onto spring and summer at the museum, busy thinking of projects and things to do there. I don’t want to make it sound frivolous either as I do appreciate what it means, I just have other things to think about and be thankful for.

Yesterday was my 26th chemo treatment. When I first started in this I don’t think they. Heck I don’t think anyone thought I would get this far, and that was without bringing any of my MCS, CFS issues to the table. But here we are, 10 months and 9 treatment cycles into this with no end in sight.

As I mentioned in another post, things have changed with my health. My pancreas being glued to my stomach by cancer nodules is a huge concern. But as I’ve said I am doing very well overall right now and I have faith there is a reason for that. I have more questions than answers as I just don’t know what that reason is. At the same time I am thankful for the many blessing this mess has brought me. It’s complicated….

Brain Fog

My first thoughts are I shouldn’t even try to write anything tonight, and then I feel I should try and capture this. As it is part and parcel with what is going on in my world and the people who have seen the rest of what I post, those people, I figure they need to see this too. I have a difficult time writing to begin with, throwing in brain fog just doesn’t seem fair. Maybe that’s my message in that this whole thing isn’t fair at all, or it certainly doesn’t feel like it.

In past posts I’ve said that I have an idea what is coming my way with this cancer thing. There will be changes to my health and eventually this disease will be the end of me. I know this but simply have no idea when this might happen, I think to myself. I have this planned out and scheduled in my mind, I have this figured out.

Brain fog enters stage left. Ugh, my first real experience with brain fog was after the crippling chemical exposures at the dirt-bag aerospace company in BC. Back while I was trying to come to terms with MCS and my other environmental illnesses, what a mess. I bring that up now so I can try and put these other posts in perspective, sort of. As I’ve tried to put down in previously, there was no help at that time. Even now, the only people who can honestly say they know what you mean when you talk about brain fog are the people who have to deal with it.

I still get the; Oh I’ve been really tired too “stuff”. Yeah whatever, I used to judge, these days I save my energy for fun things.

When this started for me years ago I could have a brain fog session last for hours and like I said there was no help whatsoever. I pushed myself and learned what limits I could deal with, and saying that I want to stress I am no expert. I have learned speaking with other MCS/EI people we are all different and essentially have the same illness in name only.

These days I find my MCS is so much better. Moving to this little prairie town was the best thing I could have done for my health. These days when I have to deal with brain fog. I’m usually sure from the beginning it is self induced. From the; I should-a-known-better part of my brain.

It’s complicated, but the tumours on my pancreas induced diabetes because my pancreas wasn’t allowed to function properly. Yeah nice, diabetes and cancer, they are of course very separate. Arseholes the both of them, but never the less separate.

Separating the two…. Now this is the beginning of another set of problems. For this post I just want to overly simplify things and mention the basic diet I’m on is high carbs for cancer and low carbs for diabetes.

Even though I know this I pushed my limits this evening I unexpectedly ate something I shouldn’t have, came home and had a short nap on my bed. Usually I am a light sleeper but I’ve noticed over the past while that I’ve been sleeping like a rock. Today was no exception to that and after a short time I awoke from a heavy sleep in to a startled/shock mode, couldn’t get my feet on the ground, very confused as I said, in major brain fog mode.

Through this so far I’ve felt I known or at least had an understanding of what is happening while it’s been happening to me. The problem is I am learning the hard way that I really don’t.

In my last post I talked about some of the changes the cancer has made to keep my world interesting, today just re-enforced all of that. I mean it isn’t fair, none of it. I had this all figured out!

Changes

Another update from facebook I hadn’t posted here. Said it before and it needs to be said again. I’m a terrible blogger. I have made a few changes to this to bring it up to date.

Cancer update

Well, it’s not all bad news, I saw my Dr Thursday to have her explain the last CT scan and yes there have been some changes with my pesky little cancer issues.

First the good news, Teddy the tumour on the head of my pancreas and the cancer mets/nodules on my left lung, diaphragm and liver haven’t changed since July. Except that Teddy is a little smaller and a bit more of a solid. This is good, this means the chemo is working.

Egbert on the other hand, is being a Dick.

Technically Egbert is a clump of nodules on the tail of my pancreas and not a tumour. One end of these nodules is attached to my pancreas. Now the other end of each one of these things is attached to the outer wall of my stomach. So basically, as it stands now my pancreas is glued to my stomach by a blob of cancer. This is where my new pain is coming from, and it is seriously uncomfortable. You don’t want this, trust me.

I forget the name and I’ll look it up when I can remember too. There is a buildup of protective fat around my pancreas now. Apparently your immune system will do this to protect a wounded organ and is common. The problem is there are new nodules in this fatty tissue. They don’t know for sure but everyone is assuming this is new cancer as all the other nodules but one in my abdomen are cancerous.

And just for fun I am now starting to retain fluid in my abdomen. The way I understand this is that the nodules on my organs cause my organs to leak fluid. The Dr says it isn’t life threatening, just gross when they have to drain it out. Yuck.

Had chemo Friday along with a bag of high octane magnesium to top things up, and I feel ok, just tired.

We’ll just have to see what these changes bring. Right now I have no idea and I’m just going to go day by day.

Mishmash

The plan was to sleep in today then do a bunch of running around and the first part worked out great. Then a nice lady came on the intercom with the daily announcements. All I heard -42 wind chill and thought nope, pulled the blankets over my heard and went back to sleep.

I live in a one step away from an assisted living complex and they do the daily announcements thing here.

Spent most of the day in bed, just because it felt like the thing to do and didn’t have my morning coffee until 3:20 this afternoon.

Sleeping all day was great but I messed up my painkiller regiment. Basically left the kids, (aka the tumours) Teddy and Eggbert unattended for the day and they’ve been misbehaving a wee bit like kids will sometimes. But it’s nothing a pasty orange pill won’t cure. Don’t much care for that idea but this cancer thing is what it is.

Decided to try and grow a beard, but only if I make it though the next few days with my sanity. Started a few days ago so I’m at the point where it’s starting to itch. I’m feeling tired which means I’ll probably be lying low anyways, so why not.

Thanksgiving

So I was able to post about how I got MCS and I am relieved it’s finally out there. I think in some strange way I have a story to tell and it feels important to me that these posts surface and be seen. As jumbled up as I have been making blog entries, I feel they are parts and pieces to the puzzle that is me. Some bloggers give too much personal information, some not enough. I’ve been trying to find a balance and lay a foundation for people to understand why I think, feel and do the things I do.

I found this draft buried in my files from last fall and decided it was time to get it online. It’s the last of the old ones, I promise. From this point on everything here will be a new puzzle piece for the blog of Rob, MY EI & I.

Thanksgiving….

I don’t think I ever written anything about Thanksgiving before. At least nothing I can recall off hand. Seems strange, I can blabber on about all kinds of subjects. Not sure why this one would be the exception.

Today I’ve perused a number of great thoughts on thanksgiving whilst lurking on social media. The place I said I was going to stay away from. Still struggling to get that life I keep talking about, but I am trying. By the way I love the word “whilst” and plan use it as often as I can.

So what I saw in common with many of the wonderful posts today is that even though they were thoughtful and appreciative, they came across as lists to me. Nothing wrong with that, I just like to look at things from a different perspective. I guess you could say I’m not a list person. Ticking off a box or number on a list just doesn’t do it for me. Sure, it could be a sign of progress to some but it can also show the surface has barely been scratched and there is so much left to do.

So how can I express my thankfulness without making a list, big learning curve happening. I guess blogging can be introspective too, who knew?

Okay, apparently everyone with a blog knows that, sigh.

I have been blessed to meet a wide variety of characters from all over the world over my lifetime which pretty much covers the full gamut, angels to assholes.  Hum, I suppose I should be thankful for that because they’ve shown me there can be so many reasons to be thankful.

When I add up the events of this day, I’m thankful today was another very good day. I went for chemo yesterday but I was able to clean out the rain gutters today before it rained. Met some picker buddies and had some items they were after. I buy and sell antiques as a hobby; it’s very satisfying when you can find “stuff” other people desire. Had a nap then went for coffee with a good friend, came home made supper and had another short nap.

So much more to say as this time of year the autumn colours are so crisp, bright blue sky between the bright white clouds beautiful yellow leaves blowing in the breeze and so much more.

There is in my eyes so much to be thankful for I dunno even where to start. But I am thankful.

Blue On Black

Kenny Wayne Shepherd – Blue on black (With lyrics)

Enjoy.

How I got To This Place

This is a hard post for me to write and I’ve tried many times with many hours of thought. I would like to talk about mental health and dealing with debilitating illnesses such as MCS then moving on in my case to cancer. In my mind every thought or action I take to live with, explanation or whatever I have re: this cancer thing is based on my years of living with MCS and these other environmental illnesses and then dealing with people who just don’t get it.

This is why I feel as though I need to lay a foundation for some of the personal explanations and statements I plan on getting into in future posts. But man, there is so much detail; so much to talk about and my big concern is missing something. I created a category called MCS Thoughts when I started this blog to talk about how I got MCS and the garbage my coworkers and I have gone through over the years. But I haven’t even started there yet. Yes it is work related.

We were exposed to toxic chemicals while at work in a federally regulated company in Canada. A large number of us became too ill to work or even function some days. The bottom line is that instead of reaping the benefits of all these wonderful workplace protections and assistance we’ve all heard about, we were kicked to the curb. We learned the hard way it’s all bullshit.

I got to see and experience the dark side of Worksafe BC, scumbag insurance companies and scumbag insurance company doctors, company safety coordinators in the tank and the management that kept them there, inept and unqualified Human Resources and Development Canada, Federal Labour Program personnel  and quote; medical professionals, un-quote who couldn’t care less if you lived or died. More I’m sure, but this is what comes to me tonight.

So bad that we even made it on to the CBC News Go Public program but it didn’t help much.

Oh ya, then the politicians and the many letters/emails and phone calls.  So many in fact it got to the point where I was able to have point of order questions raised in the House of Commons in Ottawa. Nothing came of that either. It’s all on paper and we can’t even get legal assistance Canada as it’s too big of a case and we don’t have 150 grand to give to a lawyer to start something. Like I said, it’s all documented, all on paper. Just all these people are too important to read any of it.

From dealing head-on with this for years I have no faith in my government. It doesn’t matter what flavor you vote in it’s been my experience they will disappoint. My experiences with medical people haven’t been much different. Honestly I believe I’ve developed PTSD from trying to get to the help and assistance these people say they provide. It makes me physically ill to look at this paperwork.

The present;

My Dr retired several years ago and it became almost impossible to find a family doctor in the rural area I reside in, so I basically stopped trying. I mean why bother, saying that as a statement rather than question. Then I do get sick then I find myself in the local ER as I had no place to go, what a nightmare. I felt it was beginning all over again.

I went to the ER with a lot of pain in the left side of my abdomen and generally feeling terrible. After several hours they tell me I’m diabetic and later that I have a bladder infection. It didn’t make any sense to me, but it was an answer which was a vast improvement on my past experiences.

I take the pills for the infection and diabetes but it doesn’t help with the pain. So a few weeks later it’s back to the ER I go. This time I get a great nurse and intern. Very thorough examination, the works and I’m feeling confident I’m going to get some answers. Then the doctor comes in and tells me I’m not a real emergency and shouldn’t be there, blaa, blaa, blaa. After a few minutes I just wanted to punch him in the throat. Apparently during this time he must have told me he had an ultrasound scheduled for me, because I have no idea when else he would have said that. I just wanted to leave and not look back.

The ultrasound tech spent a half hour on the area where my pancreas is, I googled where the pain was coming from by then, so I had a bit of an idea. After all this time she then asks me how long I’d been diabetic and how long I’d been in pain. In my mind I uttered the f-word. As a year or so prior to this I lost a cousin to pancreatic cancer, I was slowly beginning to get the idea of what was going on.

I saw the; I’m not a real emergency Dr as he did get me in for the ultrasound. Now remember I live in an area where Dr’s are scarce so having one tell you they are willing to take you on as patent is a very good thing. Anyways, he tells me he’ll help me with the growth on my pancreas and the first Dr, well she’ll help me with the diabetes problem, right.

Thankfully the first Dr I saw in the ER told me she would take me on as a patent when I got to see her and we’d deal with this together. We’re in the examination room and she’s going over what is about to happen and explains this and that are all going to take place very quickly etc. I sat there dumbfounded thinking; My God, you believe me when I say I’m sick! Where were you fifteen years ago when I got MCS?

Good news ending, like I said she’s taken me on as a patent and has turned out to be the best family Dr I’ve ever had. Life is good.

Snow Day

Another short cancer update.

We were a few minutes late getting to the cancer centre this morning because of the roads, these things happen. I got chair 22 in the very back today Fine with me, its one of the fancy schmancy ones with a remote control for the recliner. Oooooooo.

Even the walk back there was nice, as all the nurses I met along the way greeted me with a friendly hi Robert, hi Rob. Turns out the lady in chair 21 was my neighbour from my last chemo visit too. Got to chat with her and her partner again and might even see them again next week. So ya, it was nice to see familiar faces in the pod too.I slept for a bit in the chair but it Just seamed like an extra long, extra draining day today.

The snow plow trucks were out in force clearing the road so the ride back home was fine thankfully, the travel warnings were off of hwy 41 when it was time to come home so it cut at least half an hour off the trip. Nice.

All in all it was a good day but I am feeling kind of stunned and tired from chemo early this time. Usually this doesn’t happen until tomorrow or Sunday. Oh well, getting recovery time over with quickly is fine with me.

Noticing changes. The fatigue I’m dealing with isn’t nearly as bad as it was over Christmas. So I’m pretty happy about that and makes me think I’m finally recovering from the move over to this apartment. On the other hand… I am dealing with pain in my abdomen again. Not as bad as it was last spring but not that far away either. I have happy pills for that, I just have to remember to take them. Going to see my Dr. next week to get a better idea of my options.

Almost bedtime I think.

Faith

This was actually a facebook post from last night. I read it again this morning and decided to copy it here unedited because it felt better just the way it is.

I want to write, but everything I come up with is so long winded, frusterpating.

I did quite a bit of writing; slash posting (slash like this “/” Mark and Jon) yesterday in one of the facebook MCS groups, more than I have in a while. This got me all inspired to say and post more so I went and made myself a cuppa instant coffee after supper, something I never do. Then being all wired for speed I started writing and writing and writing without posting anything. Which as strange as it sounds was the subject of the thread I was writing about.

Yeah, welcome to my world.

My poor brain was just full and I was trying hard to get stuff down and typed out. We were talking about some difficult personal subjects and in the back of my mind the thought or subject of faith came up. I’ve been pondering mental health and dealing with MCS or cancer for weeks. Dealing with all of this and staying sane. It’s something I really would like to write about, faith is a big part of that.

So much to sift through so this is going to be a several part post I think. The rest of what I have here is going to be disjointed and abbreviated I think.

Not long ago I had some quiet time to speak with a very good friend about losing a child. Sadly it’s something we both have in common and impossible to explain as there just are no words. Thinking of Miriam last night was why I reposted that picture of her. Like I said there is not a day that goes by where I don’t think of my kids.

My friend is a devout Christian and she took the time to share with me…. The thought, the belief both sound institutional but those are the words that come to me. I’m tired and proper words escape me for this, the most important part of this sentence.

She shared with me the belief that her children who had passed away, have gone ahead to prepare a place in heaven for my friend and her loved ones. Miriam was also very strong in her faith as a Christian and it’s something I have rested in for a long time. That she is in a much better place than here.

It’s strange how I’ve found so many different subjects interrelating with each other as I try to understand what I’m going through. Yesterday it was writing and not posting on fb because you felt silly being angry or upset and it went to faith. Today I was revisiting the idea that I actually have an idea of what my short future on this earth looks like. To coming across a cancer site called Dying Well and a few other links about regrets. My plan is to cherry pick those pages.

Sorry for being so scattered and I would like to write more but I think it will be for the blog.