23 October 2008

 

To fight, or to live

Cottony clouds 2 HDRMy wife Air is wiser than me—more self-aware, better at thinking long term. A big reason I'm not that way is because, until I developed cancer at the beginning of last year, I'd never had to face big, difficult decisions. I had a happy, stable childhood, did well in school, lucked into good jobs, and found her. (More accurately, she found me. See what I mean?)

Even after my cancer diagnosis, I've followed the path I've usually chosen in life. That is, I've coasted, and let gravity take me where it will. My treatment decisions have been easy ones. Follow doctors' orders. Get tests, have surgery, take chemotherapy and radiation, more tests, more surgery, more chemo, more chemicals, more treatments, coming up on two years' worth now.

On hold

The surgeries in my intestines were successful, but small nodules of cancer spread to my lungs anyway, and the chemical medicines for those haven't worked so well. The metastases continue to grow slowly, regardless of what my doctors have thrown at them.

My latest surgery a couple of weeks ago was my first that wasn't about attacking the cancer. It was simply to make my life better, to reconnect my intestines so that I'm no longer walking around with an ileostomy bag of poop glued to my belly. Now I have another new, healing scar, and I'm re-learning how to use the bathroom the way I used to.

That surgery prompted my wife to have a talk with me a couple of days ago. With her wisdom, and her insight, she's seen what I've been doing in my mind for the past couple of years. I've been treating my cancer as something to fight with everything the doctors and nurses can offer, no matter how sick they make me, hoping that one of those weapons will kill it so I can move on with my life. I've put my life on hold—and my family's life too, hers and our daughters'—to fight the disease, treating it as a phase to get through before I return to something normal.

Experiment, not treatment

Except that's not how it's going. The next treatment the B.C. Cancer Agency is offering me is a Phase I clinical trial of chemotherapy agents. That means it's a very early human test of the drugs involved, not even designed to find out whether the drugs work to fight cancer, but rather how patients like me respond to them—what levels they appear at in my bloodstream, how they interact, what side effects they produce. In other words, we've run out of the conventional therapies, and we're moving on to experimental ones that have a very small chance of working. They are, however, likely to produce side effects, even if they aren't effective in shrinking my cancer.

Air made me ask myself—after almost two years on hold, most of which I've spent hammered down by those side effects, or recovering from surgery—how I want to live my life with cancer. Because that's what it looks like I'll have to do. We don't know how long that will be: months certainly, years quite possibly. All indications are that, like my diabetes, I'll have cancer for the rest of my life. It will probably be what kills me, whenever that is.

Yet since I stopped my last chemo treatments in September, I've felt good, verging on healthy, better than I have in ages. Therefore, much of what I've suffered through, especially recently, has been from the treatments, not from the disease. I thought that suffering was a necessary part of the fight. So I thought. But now it's time to make some real decisions.

Real decisions

Do I want to be part of this new Phase I trial, to contribute semi-altruistically to cancer research, spending many days at the Cancer Agency getting tests, taking pills every day, maybe feeling sick all the time and getting more strange skin rashes, perhaps even developing other weird side effects like elevated blood pressure, maybe for no reason that might actually get me better?

Or do I want to look at something else, like Vancouver's Inspire Health Integrated Cancer Care, and the Callanish Retreats, to try different things and look at managing cancer instead of fighting it? Strange as it sounds, should I make cancer part of how I live my life, rather than something that stops me from living it?

When I heard about the trial yesterday, I assumed, almost unconsciously, that I'd proceed with it. But that's still coasting, just taking whatever the doctors serve up from a diminishing buffet. There are places I still want to go in my life, things I want to do, the husband and father I still want to be. Perhaps now is the time to go there, to do them, to be that, because I can't wait forever first.

I shouldn't waste my life trying win a fight that likely can't be won. I should take it off hold, and live it.

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Comments:

A rather sobering post, Derek. I won't call it sad though because it seems to hold more hope than much of the other 'let's try another treatment' posts. Your wife makes a great point about fitting some 'living' in your life between treatments - ones that you evaluate and choose because they are right for you. Plus, as a side effect of taking breaks from things with side effects, you will have moments to pause, catch your breath and strengthen up a bit (hopefully - there is that word again.)
 
One thing you might want to take into account is that your participation in the trial may help others now or in the future. It's a nebulous sort of thing, but it's a thing.

I admire you for taking the time to write this post and to explore the issues with yourself, as well as this audience.

And I wouldn't presume to tell you what to do, beyond saying find the balance between 'fighting' and 'living' that you think will let you live the best, longest time possible. Of course, you can't be sure without a time machine. Damn.
 
Wonderful post, Derek.
 
A hard decision but the right one, I think. Someone else I know was diagnosed with a leukemia like cancer, a year ago. like you he did a series of chemo treatments. After it was all over he said, forget it I'm never doing that again. I saw him a month ago, he looked great. He seemed happier and more focused than I've ever seen him. It's like getting cancer is the bodies way of saying hey, this is your life, live it. Hugs to Airdrie for nudging you in that direction. You guys are awesome. keep trucking.
 
Thanks for this post, Derek. I felt my heart break a little but, also, I knew instinctively you are making the right decision for not only yourself but also for your family.
 
Hmmm maybe consider RFA since chemo doesn't seem to be working. I dunno I'm sure you probably have contemplated all the options.

At least your have a very supportive family.
 
Thank you for sharing your thoughts with us. You are an amazing person and many of us, readers you will never know, admire and respect you. Yes, some balance between fighting and living might be an option?
 
What an excruciatingly difficult decision to have to make. There are so many 'what ifs.' It certainly puts things in perspective for those of us not living with or fighting cancer. I have no answers or suggestions for you. I am sure that you will make the best decision for you and your family. Take care Derek.
 
Derek,

I've stopped by here every few days for the last couple of years. I've not had anything to say that would add to the conversation, and so I've kept quiet. I imagine I'm not the only one.

I know that this is your decision, your life and, ultimately, no one can live it for you. But perhaps it helps in some way to know that there are people out there who give a damn.

I admire your spirit and your grace.
 
"I've stopped by here every few days for the last couple of years. I've not had anything to say that would add to the conversation, and so I've kept quiet."
Me too.

That post left me feeling at a loss. I don't know how you do it. I admire your strength and honesty. I hope there is some way you can live and continue to fight as well.
 
What a very inspiring post. I don't mean to sound dramatic however, it's made an instant difference in how I look at our finite time here on Earth. Thank you for sharing your wife's wisdom and your story.
 
Derek,
I also have been checking in quietly since finding you in a google search when searching for colon cancer after my dad who is 70was diagnosed. He like you has followed all of the suggestions his dr's have thrown at him with unbelievable patience. He has shared many of the same treatments that you have and the same results. His cancer has spread to his liver, but is not growing and seems to be stabilized, or so we hope. He continues to try the chemo treatments that the drs suggest and often says I wonder what would happen if I just let "nature take it's course". He maintains his sense of humor, his amazing resiliance and has the patience of a saint. I understand your thinking and appreciate your sharing. Thank you for your insight into living.
 
Hi Derek,

Like others in the comments above, I have been cheking your blog almost every day for over 1 year now.

To be honest, I don't even quite remember how I came across your blog, but it was very easy for me to see that you are special.

Like others, I never wrote any comment, I just been watching your journey from the outside, always hoping for the best.

You are an inspiration to many, I am sure. Certainly to me.

Your post made me want to write to you, to thank you, to wish you luck.

All the very best to you and your family.
You have many "friends" out there, praying for you.
 
hey derek,

i can't begin to imagine how difficult making that kind of a decision would be... if i said i hope you keep fighting, it would only be for superficial and selfish reasons--i like reading your blog, you're a cool guy, you know how to bring the nerd love to any event...

but really what i hope is that you are able to make a decision that you and air and the fam can be at peace with, and that you're able to squeeze all the happiness you can out of your life, however long it may be.

lotsa love to you guys.
 
Like so many other people who are now writing in, I have been reading your blog for quite a long time. Since hearing you speak of your cancer on CBC radio, I think. This is the first time I have left a comment. I have metastatic breast cancer and believe that all of us with cancer face choices about kinds of treatment, ending treatment and, more broadly, how to live. But does the choice have to be fight OR live? I know that when I have been tempted to give up (the fight), I try to find ways of continuing that fit into my (evolving, 'new normal') life as opposed to replace it. But how much evolution, how many more 'new normals' can I/we live with? The choices are very personal ones and my heart is with you.
 
Hi Derek,
I, too, have been cruising through here occasionally and this post struck a chord. This is a decision with which many cancer patients are faced eventually - the question of quality vs quantity of life and the balance of your interests against those of others.

One thing I would point out (and I know that from having lost my wife at a relatively young age) that regardless of whether you continue any kind of treatment or not, you will probably at some point get seriously ill. That will not only put a tremendous strain on your family but you will, in the end, probably become entirely dependent on them. So I think from that point alone, it would only be fair to consider their interests in this decision.

And one final point: I have learned the hard way that what children will remember of you will for a very long time be entirely overshadowed by what they remember of your illness and those last months of your life. But you do still have time to exert some influence over what memories they will retain. Make good use of it. .

Whatever your decision, I do wish you a long life in relative comfort and peace. Kam.
 
Wow, Derek. I don't know what to say except that you and Air are such an inspiration.

Thanks for these wonderful posts. You're helping me become both a better parent and a better person.
 
I've been reading your blog, and sifting through your pictures for some time now, waiting for some thing to which I "needed" to respond.

I've been struggling with the same question the last few weeks, whether to continue with intensive cancer treatment, or spend a few months on palliative care. I have testicular cancer, a cancer with a 95% cure rate, except I make up that 5 other percent, and have been doing chemo and radiation for 7 months now. I'm 22, I've had a rich life. I still have one more treatment option, but it could leave me greatly debilitated, and I may die anyway.

I've chosen to continue. Blindly stepping into the unknown. Sometimes I know exactly why, other times I think I'm making a foolish decision continueing treatment.

Whatever you decide, know that there are people who understand.

I've come to have an increadible respect for you over the last few months while I've read your blog, and followed your pictures on Flickr. (I find you very cute!)

Under different circumstances I would have loved to have met you, and shared some "wisdom". I'm from Toronto, and have always wanted to visit Vancouver.

Godspeed, and take good care of yourself and your family.
 
Derek, my best to you and your family. Air's right...what is life if it is not lived? I know you're not the religious type (I'm not either), but I recommend a little philosophy from Krishnamurti: http://kfa.org
 
Derek- if you are planning to register for a phase I trial, remember that the goal of these trials is usually just to establish toxicity - establishing efficacy is not a goal, or is a secondary endpoint. You are a data point in an experiment where the objective is to determine whether the treatment is a poison. Not to say you shouldn't sign up, but for someone with your background I'd recommend reading up on the science behind the proposed treatment, and making sure it is something you are willing to back, and not just cruise into because it is the only trial available at the local facility. Don't freely donate your quality of life simply because there is no other treatment currently available to you. Also, make sure that this trial is not likely to limit your eligibility for other more advanced trials. However, if you consider carefully and go for it, best of luck and kick some cancer ass.
 
That's exactly my reasoning. This particular trial is looking at blood concentrations of two different drugs, and seems to be a relatively low dosage of the main agent, so it's not strictly a toxicity test. That said, I will carefully evaluate its possible benefit to me against likely side effects I might suffer before I decide whether to go for it.
 
hey Derek,

I'm wishing you the best in your pursuit of the right course for you. The 'alternate' approach has a lot going for it. Sometimes you can manage it from both ends of the spectrum.

thanks for being who you are.
 
Derek - I am curious as to what your experiences have been with the BC Health Care system in terms of mental health support. Do you feel that there is sufficient support in terms of helping you to mentally deal with your diagnosis and its implications and assist you and your family with decisions, in addition to physically fight the tumor and/or deal with treatment side effects?
 
The B.C. Cancer Agency offers a variety of counseling services, and I'll be getting more options at Inspire Health after I start there this week, but honestly, I haven't taken as much advantage of mental health support as I should, so I'm not the best judge of what's available for cancer patients.