July 25, 2011

Fighting for your life or just a distraction?

One of the things you hear when someone has cancer is how they are fighting it or fighting for their life. When someone dies from cancer, we talk about losing the battle. Maybe it's okay to think of it as a war, particularly when there are weapons involved, such as radiation, surgery and chemotherapy. But that suggests that when you stop treatments, you're not fighting it any more. For someone who has stopped treatment, I sometimes feel a little guilty when I read about others who are still doing something. This is intensified when I hear about others who are continuing to "fight", often right up to the end.

I follow a Yahoo group for advanced prostate cancer and these guys seem to try every possible treatment, drug or clinical trial they can find, even if it's "off label" (not using the drug as prescribed). Sometimes they pay tens of thousands of dollars a month if their insurance won't cover it. If you have advanced prostate cancer which has metastasized, you will die from it. If you are older, as many of these men are, you may die of something else, but there is no cure. Maybe some drugs will slow things down a bit, but that doesn't work forever. In my case, I can't tolerate any of the drugs that are available and I refuse to severely limit my quality of life on the chance that it might buy me an extra couple of months. For me, it's just not worth it. For these other guys, I often wonder why they subject themselves to the often horrible side effects and the chance of bankrupting their families (I want to leave every penny I can for my wife to look after herself and I refuse to spend tens of thousands on spec, even if I had the money).

In making this decision, I feel a great weight lifted off my shoulders and I can concentrate on preparing myself and my family for what I know is inevitable. Also, I have time to think and to blog about death and what it suggests about life - my remaining life and the lives of everyone else. I feel kind of sorry for the guys on the group and especially for those who I read about who spent their last remaining months "fighting" a disease which was always going to kill them.

Some people would fight even for a 1 or 2% chance, and maybe you think that it's worth it too. You can ask yourself what percentages you would need to put yourself through the miserable side effects of surgery or chemo. But what a way to spend your remaining time! I think, for many, it's the fear of death that makes them go down this path. They are so afraid to die that they need the "distraction" of treatments, side effects, constant tests and doctor visits - the fight. Or maybe they are resigned to the fact that they are going to die but don't want to spend their time thinking about it. This is a very personal choice, of course, but I think they cheat themselves of an opportunity to enjoy the time they have left - the time to prepare themselves and their loved ones, the opportunity to have a "good death". But that's the way I think about it and maybe I'm in a small minority. While I don't consider myself lucky to have this disease by any stretch of the imagination, I am glad I have had the time to think, to adapt, to share.

We all have to die sometime. It's a gift to have the time to prepare. I have already fought this disease for over 8 years. I have hoisted the white flag now so I can squeeze the best out of the time I have left. Think about what you would do.


Dianne said...

Hi Honey. I just read your blog. I continue to be so awe struck when I read how honest you are with your thoughts. I know it is not easy to allow others in to see how vulnerable you are and I am so very proud of you. I just want to say a few things about my feelings regarding your decision to stop all treatments, from a care giver's perspective (and a wife who loves her husband so very much and does not EVER want to lose him to this awful disease.) I have taken care of two of my family members who have had cancer. One that died from it and one that has survived and flourished. I have seen what cancer can do to a loved one and watch it tear a family member away from us. I think that EVERYONE has a right to decide ON THEIR OWN what the best thing is for them individually. Having watch you and your severe reactions to any type of drug that could have helped you with the disease and see the additional pain and suffering that they cause you, I totally get it that the individual who is suffering from this disease must have the choice to decide what they think is best for them. I would love to keep you with me as long as I can, but I love you so much that I don't want to see any additional pain and suffering coming your way. As the saying goes..."if you love someone, you have to let them go..." The saying also says something like "and if it was meant to be, they will come back to you". I know that I won't be that lucky but I love you "to eternity and back" (what I use to say to the kids when they were little.) My wish for you is to have a long pain free (or as pain free as possible) life, full of fun, happiness, and "warm fuzzy" memories. Whenever you wince with pain, my heart breaks and I know there is nothing I can do about it to make you more comfortable. As a Mom my job has been to "make things better" for my kids and husband. In the past, I was usually able to actually perform this duty both well and lovingly. I have felt so lost in this battle with cancer. For a long time I have not been able to "make things better" for you physically but emotionally I really try to always "be there" if and when you need me. I can't even "make things better" emotionally for my kids or self. Individually we all must find the strength to help ourselves heal internally and keep on going. It is amazing to me that in all the 8 plus years you have been struggling with this disease you have NEVER complained. You have always tried to protect all of those around you and make them feel as safe and happy as you can. You need to know that it is ok to complain...even needed at times. You know that you are "the love of my life" and the kindest, most thoughtful person I have ever met. My life really began when I met you. You have given me the strength to continue on as best as I can when I lose you. I feel you will always be with me in some way. I know that I may fall apart initially, but I want to continue on and do the things you want me to finish for you ... like making sure this blog is complete in every aspect you wish so that it can help others who are facing death. I LOVE YOU FOREVER AND ALWAYS. Dianne (Honey) xoxo

Linda said...

My Dad died from oesophageal cancer nearly 3 years ago, and I really don't like the terms used about cancer as a "battle" and of "losing" or "winning" the battle. An individual may choose to see their cancer experience as a battle if they wish, but the way I see it there are no winners and losers. Death from other causes and diseases is not referred to in that way, nor has someone that dies from a non-cancer cause "lost the battle". The fact is, that more often than we would like, a cancer diagnosis is not something that we can overcome, and no amount of "battling" will make the individual a "winner". My father had major surgery for his cancer, but it was too late, and chemo was not recommended because it was not likely to cure him or extend his life, it just would have made him terribly sick and suffer more. I really admire your strength and honesty Doug.Thankyou.

Anonymous said...

Doug and Dianne,
First I'd like to thank you both for sharing your thoughts and feelings with everyone.

I have lost family and friends throughout my life and I am no stranger to grief. I have often thought about dying and realize that I am not afraid of death but rather the way I die frightens me. In some ways Doug, you're lucky. You're preparing yourself and will have as you say a "good Death" I have often wondered how I will deal with the knowledge of my final days and have come to the conclusion that if I'm lucky and I'm able I will have the opportunity to choose my time.

I believe your decision to stop treatment was honourable and I have a lot of respect for the way you are handling your life and death.

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