As a cancer-having agnostic, there is a funny bit of verbal annoyance that I have come across.
In case you didn’t know, as an agnostic, I don’t prescribe to any official religion, nor do I feel particularly strongly that there is or is not a God and/or afterlife. While I lean towards there not being a God (at least not a presence described in most religious texts), as agnostic, the line I come down on is simply: I don’t know. I have no idea.
But, for example, I don’t pray. I don’t go to church. I don’t believe, necessarily, in the power of prayer, exactly.
However, I can’t even count how many people have told me that they had me in their thoughts and prayers. And I’m extremely grateful to each and every person that has done so, whether or not they’ve actually told me.
Isn’t that kind of strange? Hypocritical, even?
I don’t really have an answer. Shocking, I know, that an agnostic would think about a spiritual issue, shrug, and say “Hell if I know”. But I think that the way my brain is wired, I’m just appreciative that people care enough to express concern and desire for me to get better.
And truthfully, there really isn’t much that anyone can do for me. My family keeps our kitchen stocked with foods I like. The shows I watch are generally available either on cable, hulu, netflix, or somewhere else online. I already own the video games I want to play. Realistically, the only thing that people can do is to recommend books that they’ve enjoyed lately, or recipes for new and exciting foods that I can cook.
Unless you’re Chef Lenny from one of the country clubs we deal with. Then you make house-made pasta and send it home for me with my Dad. Because you’re just awesome like that.
But not everyone (myself included) can make fresh pasta, and so positive hopes, vibes, and prayers are about the extent of it. And while I just don’t know if prayer does anything, I can’t help but be grateful and thankful that people desire my recovery enough to think of me in such a personal moment. I really don’t know how I could possibly repay all of the good vibes that I’ve gotten, both from long time friends, friends I haven’t spoken to in ages, family members, and strangers.
And here’s another potentially hypocritical point: If you told me I could go back in time, and re-do my transplant, only, without everyone praying for me, I absolutely wouldn’t.
Now…you could say that’s because the transplant process was basically the 48 worst consecutive days in entire life (a life that includes concussions, mono, ligament tears, shoulder separations, multiple occurrences of bronchitis, and all kinds of other minor injuries that I’ve managed to give myself). But that’s not what I mean – I mean, that if I could remain where I’m at right now, but have had nobody praying for me during my transplant, I absolutely wouldn’t change it.
Personally, I rationalize this because I think that living things are more connected than we’re aware of. How, why, and how much we’re connected, I have no idea. But I fully believe that positive energy and good thoughts can help good outcomes occur.
At the same time, though, I have to acknowledge the very real fact that many, many, many cancer patients don’t make it. In fact, fully 25% of people that get a transplant, die. Fully 75% of people in need of a transplant die before a match can be found for them. And I refuse to believe that these people that didn’t make it, didn’t have just as many people praying for their recovery, hoping things would go well. I don’t believe for a second that more than a passing few of these cancer patients ever “gave up”. And I highly doubt that any of these fallen warriors did anything but what all of us have done – listened to their doctors, tried their best to stay positive, and generally just hope for good things to happen.
It’s not like you can do 100 push ups a day and suddenly, you’ll be cancer free. You just have to have faith in your medical team that they know what they’re doing, that they’re giving you the right stuff, and most importantly, that your cancer responds to it.
So for me, while I am grateful to the point of tears for all of the love and support I’ve gotten, it’s become a bit of a pet peeve when people suggest that “keeping positive is half the battle”, or any of the other metaphors associated with beating cancer. Another popular one being that you imagine your whole body as soldiers, and that the cancer is an invading army, and somehow, this visualization helps your body recover.
If it was that simple, do you think anybody would ever die of cancer?
The truth is, cancer is horrible. We don’t know nearly as much about the genetics, mechanisms, or drug interactions as we’d like. Partly because our cancer medical history is so short. Partly because I think doctors are finding out just how different 2 of the “same” cancers can be, depending on the genetics of the individuals that have them. Partly because I think a fairly high percentage of patients choose not to participate in research studies tied to their disease (I don’t have numbers on that, though). I just know that when my doctors asked my permission to get extra bone marrow every time they do a biopsy, so that it can be submitted and stored in an (anonymous) research lab, my parents didn’t want me to do it, but I immediately said yes. Same for blood draws. Same for post-transplant phone call questionnaires. Same for the packaged sheet of questions I got at day 100, and will get after 6 months, after a year, 2 years, and 5 years. I hope that someday, my results, marrow, and blood samples can help find better, more effective, and less horrendous ways to deal with leukemia.
So the next time you talk to a cancer patient, try not to insinuate that if they don’t stay positive, that they will lose their battle. Express your concern, your sadness, your hope for their recovery. Those are all wonderful things to hear. However, everybody has their own coping mechanisms. And sometimes, they involve not being bright and cheery and happy. Sometimes it involves letting yourself feel sorry for your situation. Because god dammit, cancer really sucks sometimes.
But the truth of cancer is that not all of us make it. The truth is, sometimes it comes back. The truth is, there is a part of my brain that, for the rest of my life, will be a little bit afraid whenever I’m feeling under the weather like I did pre-diagnosis. The truth is, I will live the rest of my (hopefully) long life with the fear that it could come back, or that if I have kids, that I could pass on the genetic mutations that I had that caused the leukemia in the first place.
And the real truth is, that none of us, ever, want the cancer to win.
Eff Leukemia 
I know exactly what you’re talking about. Being a pagan with MS I’m never quite sure how to respond to prayers. I appreciate what they mean. Thank you for thinking of me and whatnot but I also know it’s the only way they think they can help.
I approve of this rant! For the sake of the people that need to hear how it is, continue your truths!
~Twitchy the Witch
http://witchyrants.wordpress.com/
It’s tough to not fit into the prescribed religions of your nation. And I don’t mean, not being the majority. I mean, like you, I’m not only not Christian, I’m not Jewish, Muslim, Hindi, Buddhist, or other. Or rather, I guess, I am “other”. It’s just a weird thing, for me, because I get the thought and the kindness behind the sentiment, it’s just awkward for me because I don’t really know what to say other than “thanks?”.
I love explaining what agnostics believe in to people. (I explain religion quite often in my line of work running an all-religion store). my favorites are “haven’t decided yet”, “possibly all of them”, and “belief bordering on athiesm”…
Otherwise yea… how do you respond? “I’m so glad your belief in your God requires you to pray to that God for me. Because I wouldn’t…”
I sometimes go with “a little bit of this, a little bit of that”, with my best Italian accent (it’s not very good, so I think that makes it funnier).
I just try to appreciate the sentiment, that the person in question feels helpless, but that they do, in fact, desire to help me. So I’m grateful for the thought.
yup yup!
Hi Tony,
Just wanted to let you know who much I enjoy reading your updates. So glad you are doing well and wish you the best. My 6 year old son Tucker has leukemia (ALL). I learned of you through my cousin Mason. We will continue to send you good vibes, positive thoughts and even a few prayers as well.
I hope Tucker kicks ALL’s butt, and thanks for your kind words and thoughts 🙂
I’m being a stalker again. 🙂 The celestine prophecy and house of leaves, if you haven’t read, are two of my favorites. They are definitely a little obscure, but still great of you’re into that sort of thing. The food thing I will have to give some thought to.
I am so HAPPY to hear that you’re also agreeing to the extra aspirations, biopsies, blood draws, etc. I have agreed to do the exact same thing – I can’t donate marrow or blood to heal someone like our incredible donors have agreed to do, but what every cancer patient can do is give to research and sadly not nearly enough do. I think this is a travesty. To refuse to participate in research (as long as it doesn’t put us in further peril) that might save someone’s life, that could prevent someone from having to go through the terrifying journey we have embarked on, that promises the possibility that our extra tissue, blood etc. could become the catalyst for a cure or, at the very least, less invasive, toxic chemo and procedures leaves me flabbergasted. How can you or I or anyone that has at one point had to battle leukemia fail to participate in saving a life? Perhaps it is fear, or maybe it is being so caught up in the ‘leukemia bubble’ that you don’t know how to pop it, but whatever the reason … I just don’t believe that there is ever a reason to refuse the chance to help future fellow warriors, especially if it does not pose any risk or threat to your health and well being. Thank you, as always for your honesty and bringing up the topic of how we can help … because we are NOT helpless and we CAN do something to change the future of cancer and hopefully, one day, eradicate it completely!
PS If you want an interesting non-fiction read (no matter where your political affiliations fall or don’t fall) I highly recommend “The Shock Doctrine” by Naomi Klein! Oh, and if you haven’t already (although I’m guessing you have since it is pretty clear you are well-read) try this oldie, but goody on for size … “Brave New World” by Aldous Huxley … it’s one of my faves!
Okay back to kicking butt and taking names in preparation for my new birthday on the 24th!
Niki
PS … I have an awesome recipe for Vietnamese summer rolls with a peanut dipping sauce. Or, if you’re in dire need of some comfort food … check out smittenkitchen.com
You had me at peanut dipping sauce. Yes please.
I guess I looked at it from two places, one healthy, and one morbid.
On one hand, I wanted to just help the research into our disease. But on the other, if I was going to suffer, and possibly die, anyways, I wanted at least SOME lasting good to have come from my life.
I’ll check out the shock doctrine, as I’m running out of things to read again. And you were right, I have read Brave New World, and it’s a favorite. I stole my sister’s copy when she had to read it over the summer when she was in high school, and I never gave it back.
And while I wish I could tell you that the transplant is gonna be no big deal, and that’ll you be better in no time, you know what you’re facing IS a big deal, and that recovery is long and annoying.
But despite that, or maybe even because of it, you’re going to go in with your head high, your eyes open, and your heart filled.
Do the best that you can, and know that there were definitely days that I did absolutely NOTHING. Don’t ever feel bad about that.
Lastly, while I hope to hear from you while you’re recovering, I’d expect that you won’t be posting for a bit. So, I will wish you the speediest possible recovery, and if you ever need someone to bitch to that knows exactly what you’re going through, feel free to message me.
Anthony ….you move me to tears and what an insight into your world. Thank you for the selflessness, purity of thought and wisdom that you have shared… Much love
Thanks Auntie Momo 🙂
As always…..really great to read another post from you, Tony.
When I was a little kid, I remember looking in the back of a prayer book that belonged to my mother. There was a section that had prayers one could say that could shave days off the time of the “poor souls in Purgatory”. After each prayer there was listed the number of days that it was worth. I thought WOW! I’m gonna free all of the souls in Purgatory, and began a burst of rapid recitation, imagining souls flying out of somewhere and flying to somewhere else. And it was all in my power! I think I eventually realized that it was a pretty crazy concept, even when I was 8 or so.
When I was little, the beauty of Catholicism for me was that it inspired imagination. So I imagined that heaven was the coolest place, with god as the head honcho, but also living on his street was Santa Claus, the Easter Bunny, and the Tooth Fairy. Not kidding you. One time in the third grade at St. Margaret Mary Elementary School, I had an argument with my third grade teacher over the existence of the Easter Bunny. She asked anyone who believed in the Easter Bunny to raise their hand. I was the only one who did. She asked if I REALLY believed that an invisible rabbit hopped from door to door, filling baskets. I remember telling her that I couldn’t see god, but I believed in him. I remember her not knowing what to say. I was roundly mocked on the playground that day, but felt the the Easter Bunny was happy that I stood up for him and that maybe I’d get some extra chocolate next Easter.
Of course, as I moved further along and farther from those years of blind happiness, my beliefs and outlook began to resemble something closer to your take on religion and prayer. I believe in the spirit of people. I believe in doing what we can in our own little piece of the world to do what we can to lift up those in need. I believe that this is a pretty crazy world, but it’s the only one we got. I have friends who often ask for prayers, and sometimes I say that they have my prayers, and I don’t feel like a hypocrite. I feel like if they know friends are pulling for them, it can perhaps bring them some peace of mind, and maybe make their world a better place for them, which can make the world a better place for everyone. Not in some huge, earth shattering way, but just a little solace somewhere.
I don’t think that any amount of “prayer” in the traditional sense can send souls flying out of Purgatory any more than it can cure leukemia or ward off Alzheimer’s. What I do think is that we’re all intertwined for a finite number of spins on the globe, and it’s important to keep our inner connectedness at the forefront of our minds.
Well said 🙂