A Blog about Career Changes, Madness, and My Awful Brain

Thursday, June 20, 2013

Sorry kiddies....fought as hard as I could and I'm not giving up, but I'm Dying.

It's been a long time since I posted on here, and as you are soon to find out, that is actually a good think.  Good news I want to pass around as quickly as possible, so I go on Facebook and disseminate it as quickly as I can.  Bad news takes a separate route.  First, I have to tell my family first, using the phone technology I hate so much.  Once very close family finds out,  I have to decide how to let the rest of my friends and family know what's going on.  Making a bad news post on Facebook sometimes comes out tacky and rather common. Moreover, you can't explain exactly whats going on in such a small space and are more liable to create chaos and misunderstandings.   The problem is, there are a lot of people who want to know whats going on, and I WANT them to know....I just don;t have the emotional energy to repeat bad news over and over again. Each time, it takes another sliver of happiness that is trying to hold on to my psyche with all the strength it can.

So Instead of a facebook bost, I thought I would make a blog post, and then let people decide if they want to read it or not.  It gives me a large space with which I can thoroughly and patiently share everything that I want you to know.  And kiddies....this week there is not a lot tell, but clarity is of the utmost importance.

How can I be any more clear?  Kiddies, I'm dying.  Although the last batch of chemo left me generally "sort of" stable, over the last month there has been a tiny bit of progression (ie the tumours are showing signs of growth.  My last oncologist was very bad at explaining what everything meant and what "stability" and "small progression" meant for my chance of living, or the chances of getting surgery to fight for a cure.  He was very untalkative and wasn't very good at responding to my serious questions about survival chances and the next steps if things don't work.

Well, now I have a new oncologist.  This new doctor has a lot more compassion and a great deal more patience.  He doesn't seem to screw around and answered any question I posed in a straight, easy to understand fashion.  I actually liked him pretty quick because he seemed very interested in my current health and asked a lot of questions about my personal l ife.

However, I was devastated when he suggested that because of the cancer progression, I should get back on chemo right away.  I already have a date to get the same Folfiri with Avastin next Friday on the 28th.  As bad as the news was, the worse news came when I asked him how long the chemo would give me, and how long I would need to be on it.

He told me that, by staying on chemo, I might be extending my life for about a year to a year and a half.  Without chemo, he doubted I would make it more than 8 months.

Kiddies, I am now palliative.  I'm dying. Without some miracle of other, I'm gonna be fighting to make it to my next two birthdays.

My doctor did say that the could never say for sure tat a year is all I would get.  There are so many factors involved....I could take very well to the chemo again, which might give me more time.  Maybe with the right nutritional food and more exercise, I may extend that time weeks, months.....years? 

However, things are not looking up, and I won't lie to you and pretend that their is a chance I can be cured. That verges on the impossible, and  I don't want to spend what little time I have chasing schemes that may even in the end shorten my life.

My biggest dilemma right now is whether or not to stay on chemo. Live longer with strong chemo, but have a sitty quality of life.  Not doing chemo is not much better....some months feeling great, and then back to being sick in less time. I don't know what to do.  There is always the route of enrolling in a clinical trial, but that' no quarentee you'll get more time.

I know what you want to tell me right now.  That there is still hope.  That with a good attitude and some luck, I can still make it  You want to assure me that there are people with stage 4 cancer who defy their doctors predictions and go into remission and live long, happy lives.  And I want to believe you, kiddies.  I'm  not just going to lay down and start dying.  That isn't how I want to go. I want to go with dignity, and trying to live the biggest life I can on borrowed time.  But I gotta shoot straight here kiddies....I am dying,  I often feel like I am dying. And although I hope a year survival is a low estimate, I'm not about to deny the reality of the situation.  I am a very sick men, and 94 percent of people with my sickness don't live to see five years after their diagnosis.  I've been going for two.

I love you guys.  I love you and I want to spend the rest of my life loving you.  I hope that we can all make some time and effort to spend some time together and enjoy life.

I'm so sorry to have to giving you this news...especially in such an impersonal way.  But I no longer had the emotional strength to tell people face to face.  I did for most of my family, but I'm a very tired guy.  Tired and emotionally spent.

Love you.

Sunday, November 18, 2012

Quick Update

I'll probably be doing a more in-depth post about whats going on with my cancer in the next couple of days.  Honestly,  I've been too tired and busy to go into a lot of detail.  For those of you who don't follow on facebook, things aren't looking awesome.

A couple of week ago, I went in to the cancer center for a blood test and it was found that my CEA levels (an antigen that increases in blood when cancer is growing) were elevated.  A CT test was done the next day and a possible cancerous node was found in my left lung, as well as possible infection in two or three of the lymph nodes in my chest region.

So the cancer is technically back, and metastasized.  What I'm dealing with now is stage 4 colon cancer, and the numbers for that kind of cancer are not good.  I'm not going to give you the numbers...if you are curious, go ahead and look them up.  If you do look them up, please remember that the numbers are out of date (and don't necessarily take into account the latest progressions in drug therapy and surgery).  Five year survival rates are the chances that some one with that type of cancer will be alive in five years.  Remember though, that a lot of people who have these cancers are older and die of other causes as well  (heart attacks, infections, etc).  I'm a pretty tough guy, so my chances are all that much better.

Still, there is a lot going on in my life.  I haven't decided if I'm going to quit school or not.  I don't how effective this chemo is going to be, and I have no idea if or when I will be getting surgery for the latest cancerous nodes.  I'll be trying my hardest to fight this shit....I'm not about to give up, and I'll do just about anything it takes to be able to stick around with you guys as long as I can.

Also, I'm not to proud to tell you that I could always use your help, be it emotional, pscyhological and  financial.  My sister and my dearest friends have set up a page where you can post messages of support, and send financial support using paypal.  I know things are tough for all of us these days, and I really am luckier than a lot of people around the world, but if you have a million dollars just burning a hole in your pocket, I would appreciate whatever you can do.  Sometimes its tough to accept help, but I'd like to think that any of you could absolutely count of me if our situations were ever reversed.

Thank you..I love you all. Here is the link to the page my sister made:  http://joindansfight.blogspot.ca/

Friday, October 12, 2012

I'm Awesome, but Not Okay.

I know it's been a while since I posted, and all five of you who actually read this blog are probably wondering why it's taken so long for me to update.  The truth?  I just haven't felt like it.  At least a couple of times I've had some topics that I thought might be interesting to talk about, but I didn't want to 'do work'.  For some reason, when everything is going fine, blogging seems like work to me.  When I'm having a really bad time or need to reflect, the need to write comes back, and I once again show up here and write another depressing post.

Right now it's late, I can't sleep, and I'm having one of those bad brain nights. So I go online, do some googling, and try to find some articles that make me feel better....or maybe, if not better, at least not so damn alone.

The problem, kiddies, is that I'm doing really awesome....but I'm not always ok.

For those of you not on my Facebook......well, I finished my treatment at the end of June.  Other than an eventual stoma reversal, I'm clean and clear as far as cancer is concerned.  About 6 weeks after, I had a nice vacation in the mountains where I managed, with as little strength that I had, to do some hiking and canoeing in the Rocky mountains.  Since then, my energy has been steadily improving...I got a pass to the gym and I've been doing a lot of walking and some running and biking.  Now it's been over 3 months since my last chemo, and although I still get bouts of fatigue and aches and pains, I like to think I'm doing pretty good.

But big parts of me are so messed up.  Nobody wants to hear it.  Everybody keeps telling me how great I look, and how awesome I'm doing.  But inside....I'm so fucking angry.  I'm so fucking tired. I'm so fucking happy to be alive, and at the same time furious that I should have to be happy to be alive.

I don't think you have to have cancer or some other horrible disease to understand some aspects of going through it.  There are things that even people who have had a generally charmed life can understand.  You can understand pain.  You can understand the negative feelings associated with the loss of control of your life. You can understand the fear of getting cancer, or of cancer reoccurring, because....fuck, who isn't scared of hearing the C word?

What people really can't understand, what somebody who hasn't gone through some life-threatening serious illness like cancer can't get, is what a BURDEN it is to be a survivor.  And that burden comes from both expectations that people have about what a survivor ought to be like, and expectation we survivors have of ourselves.  I know...you are reading this and wondering....what is he talking about?  Does this diatribe have a point? To get my point across,  I'm gonna have you do a little exercise.

First, imagine right now that somebody told you that you have cancer.  Visualize it. Imagine the scenario in your mind.

Second, imagine that you survived.  Imagine that you lived through your immediate diagnosis, and have been given a new lease on life.  However, you don't know if you have another 20 years, or another 3.

Third, write down all the things you would do after.  All the changes you would make in your life. Would you quit your job?  Would you take up some new hobby that you've always wanted to, but never had time for?  Would you treat your family and friends differently?

Those dreams, those changes...those are your burdens.

Maybe you are not like me...I don't know.  Maybe you are living your perfect life and would never dream about making any changes.  If you can honestly say that you went through that exercise and changed nothing, then good for you.  You are perfect.  Fuck off.

But for me, and for some of the cancer survivors I've spoken with, there is a real pressure to 'make the most of your life'.  And I think it's important to tell you, kiddies, that it's not YOU who are putting the pressure on me, or other survivors.  It's something WE do to ourselves, because we WANT to have better lives, more meaningful lives.  But if you don't have the energy or strength or courage to make those changes when you are healthy and well, what the hell makes you think you'll have them after you have had the shit beat of out of you?  It's a burden wanting TO BE MORE, but not having the energy or mental wellness to be able to do it.

If that was it, then it would be almost manageable.  But while I'm beating myself up for not being able to do all those things I dream about, other people are either  too busy admiring me or getting flustered by my weakness and fear to understand how I really feel.  And I don't know which feels worse.

I've had people tell me that I inspire them, or that I am a hero......and the truth is that I don't feel it inside. It's not just some sort of false modesty.  Everything I did while I was going through my treatment was for me.  It was for my survival. It was still immensely selfish, if not in a negative sense.  A hero is a person who puts themselves in danger for others, not for themselves.  But there is a pressure to take on that role as well.  To inspire people.  To make them admire you.  To hide away your tears, so that they can see your strength. Because you so desperately WANT to be strong.  You want to fill that role because you don't want other people to know how weak you are.

And then, when the pressure get's to be too much, when the burden becomes something I don't feel I can carry anymore....well, I complain.  I'm only human.  I get damn sick of my life sometimes.  I'm sick of the pain, of the fear, of the pressure......I love my life, and I'm so glad to be alive, but sometimes I hate my life and I wish I was dead.  I'm not suicidal nor would I ever choose death over life, but I'd be lying if I don't sometimes wish I could just be done with it all.  But nobody ever wants to hear that.  Nobody wants to see that weakness.  They either cut you off and tell you you'll be fine, or tell you to be quiet.  Because you should be happy to be alive. You should feel lucky to have survived.  Well, excuse the fuck out of me that I don't always feel goddamned lucky.

Everybody listens to you when you are sick, but very few people actually hear you.  And the fucked up thing is that unless you have been sick, you aren't gonna get it.  You think you understand, but you don't.  You'll either feel sorry for me, feel guilty for pressuring me when you're blameless, or think I'm being a whiny, attention-seeking, neurotic bitch.  But a guy's gotta try.

Tuesday, June 12, 2012

When trying to Connect Backfires......

When you have cancer, or any disease for that matter, the internet can both be your best friend and your worst enemy.  From the internet, I learned things I didn't want to learn about my cancer (survival rates, procedures, effects of treatment), and I've learned some things that have been invaluable for my continued struggle (in some cases, the very same things I didn't want to learn, including survival rates, procedures, and effects of treament).  Among the greatest thing the internet provides, however, is support: you find other people like you.  People who understand what your going through, people who have been through what your going through, and people who turn to you as someone with more experience than them.

I've talked to many different folks, and I've read very many stories. And most of the time it's a great experience.  You don't feel so alone.  You feel like you have allies in a terrible war.  You see the wins, and you just know your gonna be a winner.


Oh man, are there ever too many buts when it comes to the net.

Today, I  had a major kick in the ass, and I felt so god damn horrible that I felt the need to blog.  Yes, kiddies....when I'm blogging, I'm usually not in the best state of mind.

Honestly, in the past couple of days, chemo has been kind of kicking my ass.  Just to update you, I got my chemo on Thursday (second last, thank the gods), and as per usual, days 5 to 8 are the worst for fatigue.  Not only that, but everything hurts and the chemo brain is in full effect.  Luckily, in the last couple of chemo sessions, I've found out about the magic of Dilaudid.  I try not to use it too often, but makes me feel about a hundred times better.  Anyhow, today I took 4 mg in the very morning, and decided to get through the rest of the day without any more if I could help it.  I was doing pretty good....oh, I felt like a horrible bag of ass, but I was dealing.

And then I went interneting about cancer.

And I found this girl.  A absolutely beautiful girl.  A ray of sunshine.  Sunshine darkened with stage 3 breast cancer at the age of 27.  I read her stories about her chemo.  She was having a rough time with it....rougher than me, that's for sure.  Not only that, but she has a daughter....Ray of Sunshine #2.  And as I read some of her posts, I saw a lot of similarities between us.  Okay, she's religious and a lot sunnier than me, but there is truth in her words and "the real" in her heart.  And the best thing was that she seemed to be doing well.

And then I skipped to here last post in June of this year.  I wanted to see what was happening with her now that she was finished with her chemo and radiation.

Her  latest post was on how it felt to be a Terminal Patient.  How it felt to know she was dying.  How she is trying to fight for enough time to get things set up for her daughter.  She has a lot of support, and I'm sure her daughter will be well taken care of by her father and grandparents.  But how the hell can you ever be sure everything will be alright....how can your daughter grow up without her mother?

And kiddies, that fucking post broke my heart.  I cried for about half an hour.  Then I took 6 mg of dilaudid and thought about my own future.

I have hope.  I do.  But you never know how things go.  You don't.  And I've decided that though I do want to live a nice, happy long life, right now......a couple of years of feeling good, a couple of years of being able to kayak, and camp, and hug my friends and family with the strength of a man without cancer would be good enough.

I wish I could say that I'm gonna stop my internet searches.  It might be good for my health, I don't know.  But I do know that I can't.  Because if there is anything that I need above all, is the "the real".  The real can make me cry, it can make me angry, but it can never stop me from giving up.  It gives me a strength that I just don't get from denial.

Oh...and about that beautiful girl...well, I thought about providing a link to her blog.  I thought you guys might want to know her.  But I've decided against it....I don't want her to link back to here.  I don't want her to know she has affected me so strongly, or to feel any feeling of guilt.  I'll let her be.

Thank you for listening.



Wednesday, March 28, 2012

Sometimes, Being Rational is Goddamn Hard.

I'm back, and I decided I needed to make another post. The secret behind this blog has always been that I've always done it for me. I've had people request some more blog entries and updates, but until now, I just plain haven't felt like writing. In some ways, it's good that I'm not writing...I write mostly when something inside me feels broken, or when I need to get bottled up feelings out.

So much has happened since my last post. Since most of the people reading this are on my facebook page, I know most of you know whats going on. But for the people who may not, I'll describe briefly the last 3 or 4 months of my life.

I finished my four rounds of chemo in Novemember, and then at the end of that month, all of Deceember, and until the 11th of January, I went through radiation and chemo. This consisted of 6 weeks of being on a constant chemo pump of 5-Fu and getting my pelvis radiated every day. As you can imagine, this was an intensely unpleasant time in my life. During this time, I was constantly nauseous and had an extremely painful skin irritations on my butt. Imagine crapping out glass twice a day. TMI? Maybe, but if I had to go through it, might as well share it with you.

That was rough enough. On my last day Jan 11, with much elation, I wrung the "finished radiation" bell at the cancer center. I was looking forward to a period of 6 weeks I would be allowed to recover before I had to go get surgery, the next hurdle in my fight. Of course, the very next day I started getting kidney stone pain. Yep....3 stones tortured me for the next 3 or 4 weeks.

Stupid me, I thought that there was no way I could feel worse. A kidney stone is pretty much the worst pain I can imagine. Well, my surgery and subsequent stay in the hospital was worse. So much worse. If there is one thing I won't share with you, it's the details of my hospital stay. Part of the reason is that, at least this one time, I don't want to remember anymore. I don't want to have anything about that time written down for posterity. I want to forget that awful time. Suffice it to say, I have never felt so sick as I did during that time. I have never felt so goddamn awful and uncomfortable and just plain tortured as I did during that time. I still having fucking nightmares about it and I'm being completely honest when I tell you I'd rather die from cancer than go through that again. That's part of the reason I want to forget....if I have to, for whatever reason, go through it again, I want to forget enough that maybe I'll choose life again next time. No guarantees though.

So now I'm back at home, and I have a new friend. Yes, I had ileostomy surgery and I have a bag to collect my waste from a hole in my abdomen. A piece of my small intestine is cut off from the rest of my digestive system, and rerouted so that the rest of my bowel can heal properly. It's not fun, and I'm so grossed out by these things that I figure I'm one of the worst people in the world for this to happen to. But it's something I can bear with, if only just barely. Because at least it's reversible, and after I finish the chemo, I'll eventually lose the bag.

And that's my next step. It looks like I will be getting about 4 more months of chemo, every 2 weeks. So fun, fun....I get to spend almost the entire summer sick like a dog. To be completely honest, the thought fills me with despair. I think my main problem right now is that I can't be rational about the whole thing....not like my friends and family can. What happens is that you guys get the exchange.....I go through a couple more months of hardship, but at the end of it, I have a chance to live a long life. But for me....it ain't that easy. I can only see four more months of torture...of sickness....of fatigue so intense, that I feel close to death. For you, it's 4 months. For me, its 4 lifetimes.

So some quick advice for anyone dealing with me....please don't tell me it's going to be over soon. Please don't try to make me think rationally. Please don't tell me there is just one more small hurdle to go. I know that it's often hard to talk to me, and I know that you guys are trying to make me feel better. But I'm telling you that it really doesn't. I could be one chemo treatment away from being finished, and it still wouldn't. Because it just never fucking ends for me, until it ends. And even then it's not over....because there are too much fucking side effects for it to be over. And it isn't even close to over. 4 lifetimes. That's how it feels.

Sympathize with me. Empathize with me, if you are able. Share your troubles and tell me how you're doing. Cheer me up with your company, and with a funny story or two. But if you can, please don't try to get me to see my troubles through your eyes.

Right now, I'm dealing with enough seeing through my own eyes.

Love you,

Tuesday, November 22, 2011

Just a jittery update.

So here I am, a jittery goddamn mess, so I thought Id try to keep my mind busy by writing another blog post.

So I had to go to the cancer clinic today because I was having some really nasty side effects. Apparently, the anti-nauseant I was taking (stemetil) has a whole host of nasty side effect, including extra-pyramidal symptons. What that means kiddies, is that I had just about the worst side effects possible....I'm talking jittterness, shortness of breath, and trouble sleeping. Having these symptoms is the worst thing ever...imagine restless legs syndrome, times it by a hundred, and make it all over your body. Last night, I'm not ashamed to admit, for the first time I prayed for death. I wanted to be dead instead of spend 8 hours climbing out of my skin, trying to be comfortable but failing miserably.

Thats right.....a car can hit me, I can get kidney stones, and I can take the sickness that is chemo and still have hope. But the jitters did me in in a bad way.

Luckily, I was smart enough to call the doctors (I started callling about two hours before the cliinic even opened). So they figured it was probably the stemetil, took me off it, and gave me an iv injection of benadryl to counteract the other drug. I also got a precription for valium, which is supposed to completely take the jitters away while I get rid of the other drug from my body. Well, it doesnt work as well as it should, but Im happy for any relief. Seriously, its not every day you wish for death to get through some lame ass drug side effect.

There is nothing deeper or meaningful about my post today. Im basically just writing this to help me overcome the symptoms

One additional thing....because I'm done my first four rounds of chemo, I keep getting questions of what's next.

Well, next wednesday (the 30th), they will be putting me on a permanent low dose of one of my two drugs (the less nasty one) and then I will start getting radiation every day except weekends. After 5 or 6 weeks of that, then its surgery. Then after my recovery from surgery, I get another 4 chemos similar to the ones I get now.

So thats the agenda.

Monday, November 7, 2011

How to see the Best in People.

My last post was a while ago, so I thought I would go ahead and update. So far, things are going both good and bad. I'm now on my third round of chemo, and, as I post, I am on day 6. Days 5 and 6, as you can remember, are really bad for fatigue. But I although the fatigue is as bad as ever, I've learned how to deal with it a whole lot better than I used to. I no longer sit on the couch when I'm dead tired...this week, I've folded laundry, made coffee, went out to get food, etc. It may not sound like a lot, but when you don't have a drop of energy left, these things can basically leave you breathless.

Yesterday, Bevin commented that I'm not nearly as fatigued as I was the first or second week. I had to admit that ...well...yeah, I sort of am, I just try to deal with it better. Also, the neuropathy has finally kicked in a bit, so on top of being exhausted, I'm restless and jittery as well. Sitting still i is just not an option.

I'm happy to add, though, that I've been eating a whole lot more since I've managed to deal with the nausea a bit better. For the first time since my diagnosis, I've managed to gain 3 or 4 pounds. Since I've lost about 15 pounds since about June or July, that's not all that bad.

Anyways, thats about it for the update. What I really wanted to talk about is the thread of my title.

How to see the best side of people?

Well, kiddies....the answer is easy. Get cancer. No seriously, it's a great way to see what people are made up. Now, because I assume that you guys don't want to go about getting cancer, I'll tell you myself how people behave.

When people first find out you have been diagnosed, the first response is always shock. Whether its your mother, or father, or some guy you just told at the store to explain your twitchy hand, people are always shocked and sorry about your condition. But then something else happens; people care. And not just the people who you think should care about your....your family, your friends, your coworkers. No, the people who care are all around you.

And it's not such a big suprise, is it? That people should care about other people? I sometimes can't believe the support I get at school, from people I barely know. The lady who I used to buy coffee from when I worked by the University found out now that I'm back at school. She remembered me from before and asked me how things are going? I answered....shock, followed by support. The professors from my class have all responded in a similar way...shock, followed by support. I have a fellow student, who went through leukemia, who almost made me cry by introducing himself to me and his past fight with cancer. A guy I barely knew has my back in this horrible fight.

And it's not suprising, because every one of those people I talked to has a story, and in almost every one of those stories, there is someone they loved who had to fight the same fight. They've been there, they've got the wounds, and they are willing to help a fellow fighter out.

The coffee lady has a mother who fought anal cancer. Professors of mine have sisters and brothers who have fought breast cancer and bladder cancer. And leukemia almost took the life of my fellow student.

Kiddies, when it comes down to it, I think people are basically decent. Sometimes we need to be reminded that other people are like us, and not just clones who annoy us with their driving, with their politics, or with their neediness. And it's funny to me that one of those things that brings us together has to be so horrible. Cancer is a way to see the best in people...trust me on this. I would never wish anybody have it, but if you ever do, best prepare yourself to see the beauty in people, and feel the support that you may have never felt otherwise.

Love you all,