Every week, Times editor Dana Jennings writes about his experiences coping with an aggressive form of prostate cancer.
By Dana Jennings
Long before I started writing publicly about my prostate cancer, I wrote about it for myself.
Dana Jennings. (Lonnie Schlein/The New York Times)Since the mid-’90s, I’ve kept a journal, mainly to take my mental temperature, and as a hedge against forgetting. I’m one of those people who needs to explain himself to himself. I never truly know what I’m thinking until I’m hunched over a notebook, razor-point pen poised above a blank page.
I wrote my first journal entry about prostate cancer last March, when I learned I had a 50-50 chance of having the disease.
March 19: It makes no sense to freak out right now. And, to be honest, it makes no sense to freak out if I do have cancer.
Since then, my journal has been a record of my highs, lows and everything in between on the cancer road. I never imagined at the time that these very private thoughts would be made public. At first, I was still trying to figure out how to have cancer. I was stunned but trying to be a good stoic, as I’d been taught as a kid back home in New Hampshire.
April 9: I found out two days ago that I have prostate cancer. I’m not angry. I’m not sad. I’m not depressed — it is what it is. … I wouldn’t choose to have cancer, but it does represent the opportunity to engage in an unexpected and serious spiritual adventure.
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
Keeping a written record of having cancer isn’t rare, and studies suggest that such writing can help patients cope better with their illnesses and even improve the quality of their lives. For me, keeping a prostate cancer journal lets me slow down, take a deep breath and potentially shrug off the hurry-up-and-wait hysteria that arrives with the disease.
Even when faced with life-changing situations, we tend toward forgetting. My journal lets me recall all the phases and stages of my prostate cancer. Sometimes, I don’t write full entries but just a couple words — kind of like Post-It notes to myself. Even so, they’re enough to remind me of the deep April dusk when my wife, Deb, told me that I had cancer (she had picked up the call from my urologist and I wasn’t home yet), or the post-op pleasure of shuffling around the neighborhood in my bathrobe — when you have cancer, you really don’t care what anyone else thinks.
And while I have worked hard to keep a good attitude, my journal has been a safe place to confess my deepest fears and sadness.
May 1: I am angry and raw, tired and hungry — feeling a bit feral, a bit mangy.
May 5: For a month now, I’ve been at loose ends, trying to be worthy of my situation, trying to be an example to my sons.
May 16: Ah, God, the Depression arrived this morning the way the heavy rain arrived — I couldn’t resist it. … I’m not persuaded at all that a complete recovery is assured. … The fact of my cancer is inescapable. As inescapable as your shadow on a sunny day.
An essential part of my journaling experience is handled by my wife — whom we lovingly call the Mistress of Minutiae. She has put together a comprehensive medical binder that details every blood test, every scan, every conversation with a doctor. Sometimes I flip through it, fascinated by the arcane details of my disease — like how it took 25 staples to close me up after my surgeon removed my prostate. It has also proved to be an invaluable resource as my wife and I have negotiated the health care system.
While there are many practical reasons to keep a prostate cancer journal, for me it’s also an act of defiance.
I grew up in a rural family whose members prided themselves on nursing bitter secrets — hoarded them like silver dollars — including their cancers: my maternal great-grandmother, my mother’s parents and a couple uncles and aunts were all killed by cancer. And most of them, until they were betrayed by seeping blood and withering flesh, said nothing about being sick.
In many ways, their silence and shame helped kill them. I keep my journal to defy that epidemic of silence. A journal lets each one of us sing a private song that shatters the silence that too often surrounds this cancer or any cancer.
May 22: The stress of cancer can be overwhelming. There’s the disease itself — burrowing and devouring, even as you outwardly look healthy as you rot from the inside. There’s the uncertainty of the health care bureaucracy — finding the right pair of hands, finding the payment. And there’s simply uncertainty.
Most days, I try not to think too much about having cancer — I rejoice in those times when I am just myself and not a “cancer patient” — but I am grateful for these in-the-moment dispatches and wonder what truths the coming year will unveil. Ultimately, I hope that these entries won’t just tell a tale of disease, but one, too, of healing.
July 1: Am I afraid? I don’t think so. I love this sweet ol’ world, and I want more of it. I’m not ready to leave, and it doesn’t feel as if it’s time to go. But, I suppose, that it’s possible. … This is what it still comes down to for me: a quiet corner, a piece of paper and a pen.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
From 1 to 25 of 57 Comments
Context and well considered choices around prostate cancer diagnosis often evolve from journaling, daily writing, or blogging. http://www.cancermatch.org and, for gay and bisexual men, http://www.outwithcancer.org are two excellent, and free, venues for both blogging about our diagnosis, in the context of our own lives and in sharing our lives with others.
— Darryl Mitteldorf, LCSWThe Petition to Make Prostate Cancer a National Priority continues to be worth mentioning. We have close to 13,000 signatures and hope to gather many more, including yours. So, please read and consider signing at http://www.prostatecancerpetition.org Our lives are worth fighting for.
— Darryl Mitteldorf, LCSWDana:
The most important thing I’ve learned from you, via your writing and your blog entries about prostate cancer: the power of honesty.
Sure, sure, I’ve been told that “the truth shall set you free,” but I interpreted that pretty narrowly, to mean, the “big” truths.
Why didn’t I get it, before? Because I actually DID understand that the little things in life ALWAYS matter more than anything else.
So, it seems that I “get” this entry, and the power of being honest with yourself–even about the little things–as a way to survive your cancer. And I can HONESTLY say that I’ve made a few breakthroughs, myself, having felt the power of your honesty.
How does this reconcile with fooling myself when I need to do that? Or with wanting to look on the bright side of everything–even when I find that difficult? I’m not sure. But my gut tells me (and your blogs reassure me) that it’s possible to be honest, without feeling cynical.
— WesleyHi Dana: I read about your odyssey each and every Tuesday. I appreciate you shareing your feelings.Your writing makes me mindful of how lucky I am. I pass your blog along to friends who have had some of the same experiences as you, however, none of them to my knowledge, have written anything. Keep on doing what you do.I am sure putting pen to paper is good for you, but it is also good others. I am with you all the way. Ted
— Ted KrugerI know I can just not read this blog, but I already have, and I have never heard so much self-centered whining in my life. And yes, I have had PC, maybe still have, and have been through the whole cutting and limp and dripping thing.
I know that everyone needs his or her own narrative to get through the day, and I respect that, but this is just getting too syrupy for words. I know this is not literally true, but I get the impression that if it weren’t for the cancer, some people wouldn’t have a life at all.
Here’s what happens when you have cancer: You go to the doctor, you roll over and spread your legs, and you say “Do what you gotta do”. Then you live or you die. That’s it. Save the rest for Oprah.
FROM DJ: Happy New Year to all of you, and thanks for your kind words and
— Billsupport. And to address a debate that’s come up in this week’s
comments, writing personal blog posts does raise the tricky question
of self-centeredness. Really, what I try to do is think of myself as
an experiment of one, and I’m trying to convey the data both on a
technical level, but also on an emotional level. In doing that, I’m
trying to articulate what I think a lot of us are feeling. And I hope
that I’m helping at least a few people along the way.
Thank you so much for your posts, and for promoting the power of writing.
— LizDana, I have read all your entries on this blog and have wanted to post before, but each time I felt I wasn’t saying anything worth posting–not as compared to what you were sharing. But your writing is so soulful and meaningful, I just had to say thank you. I’m inspired by your honesty. Everyone should read these pieces because they address the heart of dealing with serious illness in our times, whether it is you who become sick or someone you love. The most frustrating thing when my mother had cancer was how little people wanted to really know. And she wore the brave and stoic face. However, one day I found a journal she was keeping. True to my mother’s nature, it didn’t deal with her emotions as much as physical facts. Still, reading between the lines, it was clear that she was in pain and dreaded the days after chemotherapy. I felt awful that she didn’t feel she could talk about this. Her friend said she didn’t want to burden us–that a mother never wants to make her children sad. But I’m so glad for the insights I was able to glean from that journal, however cryptic. I felt so much closer to her–ironically, in ways that wouldn’t have been possible if she could have helped it– for knowing the truth.
FROM DJ: Francois, I know that I could have faced prostate cancer in stoic
— francoissilence. That’s how I was raised. But that idea wasn’t satisfactory to
me. Silent suffering is another stupid aspect of that American myth of
stoic, rugged individualism. In opening up to my family, friends and
readers of this blog, others have opened up in return. And in that
sharing, our suffering eases.
I found out about my prostate cancer 2 years ago. I was 63 and faced with what to do. I was fortunate to have a son and brother as doctors and was at a Urologist team that performed the Da Vinci robotic surgery. I decided the moment i was diagonosed to go thru with the surgery, because i did not want to have to think about what to do or worry about delaying or other alternatitives. I absolutely made the right choice. I really never think about having cancer since the surgery and good blood tests each screening. I highly recommend this robotic surgery as an alternative to any other choice. i was home in 24 hours and walking the treadmill with my cathedar the third day. I never took a pain pill.
— SANDERS BECKMANAgain i was blessed to have family support from a professional side. But the key is i quickly decided to deal with it and not to dwell on why it happened to me.
Dana, you’re writing is magnificent. I connect so completely to much of what you say, and I appreciate the opportunity to immerse myself in your writing.
— SophiaThanks
Dana,
I appreciate your blog as an honest self-examination of a journey through prostate cancer and wish you a permanent recovery.
I’ve been there too and have taken a different road, one that seems to have been successful in eradicating my cancer (or at least making it undetectable by various blood tests and imaging technologies), without medical intervention. I think your readers (and you) might find this an interesting story and one of hope, since all the current approaches to prostate cancer treatment are rife with unpleasant side effects, often permanent.
My story is at
http://www.cohensw.com/mvpcsg_nov99_text.html
and I welcome dialogue.
Best of luck to you and keep on writing.
— Howard CohenYou ended this one with “quiet corner, a piece of paper and a pen” as what most counts, but I somehow doubt you’ll blink “au contraire” to my again affirming that your writing loudly includes the enormous import of the loved ones in your life without whom that corner would perhaps largely be dark. There’s much light coming from your words, so, no blink. And thank you thank you thank you.
— Marc ZThe best book about prostate cancer is by Cornelius Ryan’s wife, A private Battle. It was put together from her notes, their secretary, and Cornelius. Cornelius had anaplastic ca prostate like our journalist here.
— Anthony H. Horan, M.D.Would be possible for you to talk about the decision process? Like why, given Parker-Pope’s insights http://well.blogs.nytimes.com/2008/02/05/no-answers-for-men-with-prostate-cancer/ are you going ahead with radiation treatment? Plus surgery, plus hormone blockade? Is remaining a mystery to me even though I have a very great team working for me.
Are you a hero of some sort trying new unproven things for us to then to watch you suffer the consequences of being a human guinea pig for us? Or entertain us Don Quixote like maybe? Do you know what no proof means? It means it won’t work, is a Hail Mary maybe.
If so, and I think maybe so, I thank you deeply. Have you considered hight dose testosterone treatment HDT?
This is high risk, also unproven, and highly interesting for your readers–and I was thinking of giving it a try myself. Wildly high dose could be cure is the thinking! Or go out with bang!
Another thing very interesting topic is the so-called “phantom cancer cells” mysteriously lingering after primary treatment, almost certainly ghostlike phantoms (perhaps even determined by so-called “outlaw” mRNA sequences selected for by the treatments?) will likely recluster and kill us. Headline: Phantom Outlaws Kill Jennings. So fight has something of the cowboy to it?
Is very mysterious and spooky no? How and who knows what death lerks in our bones? You need morphine, you let me know…we fight together–I’m right here with you.
FROM TPP — SInce you invoked my earlier article, I want to offer a response. The article you cite was a national study looking at all the available data comparing treatment options. ALthough it found no difference in general, that does not mean the treatments don’t work. It just means there is no way to advise men on which is superior. As for watchful waiting, it did conclude that for men under 60, watchful waiting may pose disadvantages. However, none of this data applies generally to men with advanced cancer. The data clearly support aggressive treatment with radiation and hormone therapy for advanced cases.
— jaakkoI am a thirteen year prostate cancer survivor. Dana’s thoughts and feelings at the time of diagnosis and afterwards were nearly identical. I carried uncontrollable anger for a long time. I achieved redemption reaching to other men newly diagnosed. Now, life is good!
— Manny VazquezThanks for continuing with this journal and sharing your experiences. I’ve been through it as well, radical prostatectomy, 6 years ago, with pretty much the same outcome as yours; I remain orgasmic but without either erection or ejaculation.
It has been an interesting experience in the sense that those two “missing” components of the orgasmic experience led me to a new perspective on just what orgasm is anyway After all, women can experience a climax without some piece of their anatomy suddenly protruding from their body, and without squirting all over the place and, mirabile dictu, we still call it “orgasm.” So, OK, I learned something about how the other half lives. It’s not so bad.
As for my wife - given the realities of the situation - she is delighted that i am alive without cancer. She gets it, as i have always done, that a “man” is something more than a sausage-shaped piece of meat.
Prior to my surgery I was offered “supportive” counsel by some well-meaning veterans of the experience. Unfortunately their orientation was almost entirely concerned with trying to reassure me that my sex life would be recoverable -as if that were the one and only concern a man might have. Gosh! If I was worried about anything, I was worried about dying, not about getting laid.
After a session or two of their twaddle, listening to them rattle on about penile implants, injections, and similar trivia, i kept my own counsel and trusted that I would remain, after the surgery, still a valid, useful, and entertaining person in this world, both to my wife and others - just as if, for example, i had been born a woman in the first place, without a rampant prong jutting before me to proclaim my “manhood”.
And so I remain, happily entangled in this life, with a happy wife, and a busy life. I have no cancer and no regrets.
Now, you wrote of the diminution or disappearance of libido or lust. This has happened for me as well, although it is not as the result of any further treatment or drugs. My treatment is over, the cancer undetectable, essentially gone completely. But there has been a loss of desire for sex, in a cyclical sort of way. That is, sometimes it is there and sometimes not - certainly it is not nearly as constant a part of my life as it was before the surgery.
But here’s how it feels to me. If I have an appetite for something and i can’t get it, then I want it. But if I have no appetite for it, should I be expected to pretend to want it? To act as though i want it because otherwise I might not be seen as a “man?” I don’t think so.
One of my fantasies - Suppose my wife were to die before i do and suppose i were then inclined to connect with another woman to share my life. What should i say about my condition? When should I say it? Upon first meeting an interesting woman should I announce “Please don’t waste your time with me because I don’t get erections. Without erections I am not worth your time and trouble.” Or should i wait until romance blooms and then tell her as she invites me into her bedroom, “Uh, whoops, umm, there’s something you should know , , , ” Of course I can’t know if any of this will ever be necessary - but it raises some questions about what is expected of a male human.
I’d love to read whatever thoughts you or other bloggers might wish to share on this or similar considerations.
I have had a full life. It continues. Sex, in the old style anyway, is not part of it any more. Do I miss it? About as much as anyone misses the things of youth - but we don’t spend our lives bitterly bemoaning all those other things we don’t, or can’t, do. Like dancing until dawn or driving too fast or chasing every piece of tail we see. That’d be silly, eh? That’s the past. Today is now and I’m alive. Tomorrow is the future and I’m glad i still have a future.
Martin
— Martin the CanadianYou should be proud that you have the ability to write during your illness. When I was dealing with cancer I couldn’t start writing until I was done. But when I was done I no longer wanted to write, I needed to. Hope you get to that place soon!
In response to Bill @#5 That’s what YOU do when you have cancer. The process is different for different people. If that worked for you that’s great, but don’t trash people who have a different experience. I wish that I could be more like you in the way you look at it but that’s just not me. Best wishes anyway!
— aftercancerKate http://aftercancernowwhat.blogspot.com
Hey Bill…I am also a recent PC survivor, having experienced the whole cut/limp/drip thing as you, but having cancer is not a black & white sophmoric experience as you describe. Maybe for you, OK…but not for me and thousands of other guys facing tough treatment decisions ALONE. Dana has struck a healthy nerve with many PC patients with some straight talk…NOT the Oprah crap that doctors and other PC web sites try to so delicately spoon feed guys because it’s hard for “guys to understand & talk about it”. Roll over and spread your legs?? Please.
— Mike VliesDana,
Thanks for blogging.
I would be interested to learn about the costs involved in treating prostate cancer. I assume you have pretty good insurance through your employer, but many don’t have insurance or have non-comprehensive insurance. Even though you probably don’t pay much, if anything, for your care, you probably do see the invoices that are submitted by the doctors, hospitals and other health care providers.
Could you do a blog entry some day on the costs you’ve seen? What does a doctor visit cost? What does a PSA test cost? A biopsy? A prostatectomy? Other therapies?
Thanks for any information you can share.
— Andrewseems to me the proper treatment for a guy under about 60 with a healthy sex life is a quick and painless death. this is no way to live.
— unsatisfied customerDana,
As a lifelong, compulsive journal keeper, I appreciated your comments. In all the notes i have taken over the years about the value of writing for one’s own pleasure and benefit, three stand out:
Journal writing as a form of witnessing…of observing…which thereby warrants, provides proof that something is real, important, significant.
A journal is a sort of church for me. Because there is where I go to be exposed to the appeals and admonishments of my inner guide or higher self.
Finally, journal keeping is a way to achieve the self dominion necessary to save one’s self and thereby be a leader to others. And, Dana, you are rapidly becoming such a leader in the cancer community.
— Mark SanfordTo Bill: first, you do not know Dana. He is the type of person to say his mind. He was raised in an environment
— Walter Daviswhere men were men who thought doctors, illness and pain were to be kept to yourself or you may be deemed “weak.” His books tell of his upbringing, and they are a way to describe how he has changed from a kid working in a factory to putting himself through college, meeting a great wife, having great kids, getting a good job.
His blog and his journal are ways to help, not only others, but himself. After all, Dana has the cancer, and he needs to do whatever he can to get better and feel better. Friends and family support can do wonders, as well as introspection.
My dad had cancer of the esophagus, and he tried to “take it like a man.” I think it made it harder on us than if he had told us what was happening, so we could have some empathy. We could not give to him, or give himself enough comfort. Towards the end, he tried to tell us what was going on, but couldn’t.
Dana, keep blogging, keep your journal, and in twenty years from now we will all look back and say “whew!”, what a ride.
Dear Dana,
Thank you for continuing to share.
— Gaytana AdornaPrevious ’stoic’ generations were probably silenced by guilt. But the many cancers are the results of complex processes and interactions between genes and life/environmental factors and imperfect cell replications etc. There is no blame and should be no guilt or shame.
Cancer is not punishment for sins or failings. We are amazing but imperfect creatures in an imperfect world. I never felt guilt for my breast cancer. God was neither punishing nor playing cruel games with me. As you say - it is waht it is. What matters is that we comfort, support and nurture each other through tough times; and remember that no one leads the ‘golden, charmed life’. Sadly, suffering of some kind comes to us all. It’s part of life. But nurturing and communication build resilience.
God bless you and your family,
Gaytana
Thank you sincerely Mr. Jennings, but it appears that 270 persons are dying each year due to lax catheter policies. Regarding radical prostectomies, most hospitals ignore warnings and disregard all systms that permit staff to be reminded of those who have urinary catheters installed. See, e.g., the 8 January 2008 edition of the New York Times. Medical “errors” continue to kill more than highway accidents, and it gets worse.
Secrecy and undue influences in government is basically the more direct problem. All patients must be thoroughly educated on the risks of major cancers and related medical procedures. Despite their constant promotions, doctors often do a poor job of hiding their malice, prejudice, and contempt for patients. Moreover, the routine practice of falsifying medical records is a very hidden and well known practice.
Today, their is no excuse for not having an extremely strict certification of all posible photographs, statements, and other records that easily record all the related events that may preceed a diagnosis of cancer or other serious medical conditions. All patients must have computer access to all such information and data. Withholding such information must be very strictly forbiden. Doctors must not remain the hight priest of American society.
— Frederick Alexander JonesI continue to be moved by what Mr. Jennings writes, and I hope he will continue his weekly posts.
to #5 Bill - You say you “respect” that Mr. Jennings needs his own narrative, but when you make nasty comments you are not showing respect. And, I’d say that someone who shares as much as Mr. Jennings has is anything but self-centered.
to #19 Unsatisfied - Are you actually suggesting that it’s better to be dead than to deal with prostate cancer and/or its treatment? I believe that Mr. Jennings, and many others, would disagree.
— LynnTPP
— jaakkoNotwithstanding your reading of the data , I remain not “clearly” convinced at all that adjuvant radiotherapy will help Dana a twit and many experts clearly
( http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1475979&tool=pmcentrez&rendertype=abstract )
agree with me, not you.
Yet, fine man that he is, if he wants to do something as a trial that may be (say %10 chance) helpful plus offer experimental data for others that is his heroic and not standard care. He should know that the odds are he will be burned for nothing–be lucky not to have the runs for a couple of years too….