Every week, New York Times editor Dana Jennings shares his experiences coping with prostate cancer.
By Dana Jennings
Dana Jennings. (Lonnie Schlein/The New York Times)Prostate cancer is a dark waltz, not the raging battle of popular imagination. From that first elevated PSA blood test, to the biopsy, to treatment, to those evil twins of impotence and incontinence and beyond, I’m still learning some very complicated steps more than seven months after my diagnosis.
Cancer is a hard teacher. No matter how much you glean from the Web, how many fellow travelers you talk to, how many questions you ask nurses and doctors, there are some lessons — physical, practical, emotional — that can only be learned firsthand.
I confess that I feel utterly vulnerable. But, as the poet Theodore Roethke wrote, “Those who are willing to be vulnerable move among the mysteries.” So, as I continue to move among these mysteries, here are 10 nuggets of prostate cancer wisdom that I had to learn for myself.
1) Cancer takes you home. The hardest thing I’ve had to do since my diagnosis — and that includes having my radical open prostatectomy — was tell my parents that I had prostate cancer. My folks are working-class country people. They’re both 68, and they were 17 when I was born in 1957 — eight days after they got married. The three of us, literally, grew up together, and I’ve always been their little hyper-verbal mystery. They never quite understood why I needed to get the hell out of Kingston, N.H. And when I called them last April to say that I had cancer — maybe, after all these years, confirming their worst fears about life in and around New York City — I could barely speak for my fierce tears. Tears more for them, I know, than for me.
2) Doctors forget to share the gory details. After my prostate was removed, my testicles swelled to the size of shot-puts — bright, red shot-puts — and stayed that way for days. Nobody told me to expect this condition, and only ice brought relief. (Conversely, now that I’m undergoing hormonal therapy, my testicles are shrinking.)
3) Insurance can cause more stress than cancer. The goal of your insurer — no matter how singular or complex your case is — is to try to turn you into a statistical cliché, a cipher, in the face of your very human flesh-and-blood disease. In the months after my diagnosis, as my wife and I struggled to find the right pair of highly-skilled hands to perform my potentially difficult surgery, wrestling with my insurer caused me more grief, stress and depression than my cancer did. In our modern health-care-industrial-complex — and I’m talking about the bureaucrats who try to herd you into the cheapest cattle car available, not the nurses and doctors who are on the front lines — the emphasis is neither on health nor care, but on the bottom line. It’s our job, as patients, to resist with all our strength.
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
4) Humor is all around you. On Halloween morning my wife and I were driving to the Cancer Institute of New Jersey in New Brunswick for my treatment. Just a quarter-mile from the institute we were stuck in traffic behind a truck … a casket truck: “Batesville Casket Company,” it read, “A Hillenbrand industry, helping families honor the lives of those they love.” All I could do was laugh harder than I had in days. (On a different drive down, the Beatles’ “Do You Want to Know a Secret” came on the radio, and I dissolved into tears. I still don’t understand why.)
5) Not all blood techs are created equal. Some glide that needle into your vein as if they’re figure-skating on your arm. Others jab and stab as if they got their only training from watching the “Saw” movies. (By the way, only blood is “blood red.”)
6) Nurses know what you need. I groaned in absolute gratitude in the recovery room at the post-op ice chips the nurses spooned into my swollen, anesthesia-parched mouth.
7) Cancer can be a punch line. I learned pretty quickly, with my wife and sons, that the phrase, “I’ve got cancer,” wasn’t a bad punch line — as in: “You take out the dog. I’ve got cancer” or “You answer the phone. I’ve got cancer” or “I ‘call’ the TV to watch ‘Monday Night Football.’ I’ve got cancer.” They’d all roll their eyes, laugh … then go do what I asked.
8) Home remedies are essential to cancer recovery. There is no better post-op therapy on a sweltering July day than a cold glass of lemonade, a transcendent oldie on the CD player — say, “Doggin’ Around” by Jackie Wilson — a stack of comic books at hand (“The Incredible Hulk,” “The Mighty Thor”) and the grace of a funny and compassionate visitor.
9) Don’t sneeze after surgery. My first post-op sneeze felt as if some beyond-feral wolverine had burrowed its way into my gut, possibly seeking a second prostate that the docs had somehow overlooked.
10) You can find hope in strange places. A few times a day, after my operation, I’d run my fingers up and down the 25 metal staples that the surgeon had used to close me up — the skin around them red-purple, proud, tender and feeling as if it belonged to someone else. Sometimes, in fingering those staples, I felt that they were the only things in this world, in their plain and utilitarian way, that were possibly holding me together.
What lessons has prostate cancer taught you? Please share your own prostate cancer wisdom by joining Dana in the discussion below.
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 
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From 1 to 25 of 286 Comments
I loved this column. The variety of experiences described was moving and made me cry.
— Alice Elliott DarkI’m working #7 for all it was worth: a very serviceable riposte.
Humor, in general, as you’ve pointed out before, Dana, is a powerful tool.
This past year I found myself first working on catheter material (the day I got out of the hospital, my wife returned from the pharmacy with all the meds and supplies. When I remonstrated with her for getting the wrong lubricant , she shrugged and said, “It must be a guy thing.” “Yes!” I said, “it IS a guy thing. In fact,” pointing down to what the catheter was emerging from, “this is THE guy thing. And it hurts”).
Then came the incontinence: “When it comes to those pads, make SURE the tape is facing in the right direction. You don’t want to learn the hard way how sticky it really is.”
I’m working on impotence stuff now.
It seems to help. Not always of course… right before I went into the operating room at Mt. Sinai the anesthesiologist came out to have a few words with my wife and I. He mentioned that now they have two Da Vinci machines. One always being kept in readiness in case there was a problem with the first, I believe he said. That sounded like an opening so I asked him if the hospital had opted for the platinum service plan with the manufacturer or had settled for the gold or silver, but he didn’t rise to the bait.
The problem is when humor doesn’t work with someone you do need to connect with, when someone who you want to talk to about what has taken over your life is so frightened that he can’t even bear to listen all the way through one of your jokes, much less the other stories, the ones that aren’t funny. But that’s another subject.
FROM DJ: Michael, I thoroughly appreciate your “catheter humor.” I know that I’ll be writing a future post about catheters, and the “joy” of bladder spasms. If you don’t know about them, you don’t want to know.
— MichaelJan 02 I had bladder cancer, prostate cancer and appendix removed. so one then has to cope with a radical urostomy, ileostomy, and impotence, I was 55 at the time. Then came the chemo, and i have nothing but praise for the chemo nurses who stuck me. chemo drove me into depression, but hey everythin is great now=- quit my high payin, high stress career, and now spend my days walking six miles each day with my two english cockers and gardening- watching george bush completely destroy our country.
— Carroll Shoresthank you for the witty and thoughful column.
— giuseppekeep going !
Thanks for this column. As one who chose the “Giuliani” or seed implant solution some six months ago, I can totally relate to virtually all of the “10 Lessons,” above, in one form or another. Aside from the loss of almost all semblance of dignity (eg., traveling on business through Asia for a week with a catheter & leaking baggies), the startling realization that the docs really don’t know for sure what the recovery and “lifestyle” effects (a lovely euphemism) will be for any individual has been the toughest to accept. Have grown weary of hearing “…well, yes, your situation is a little unusual but not uncommon….” That 411 BEFORE the procedure might have been a bit more useful.
These irritations aside, however, I am well aware that prostate cancer is on the more fortunate end of the cancer scale in terms of recovery stats and relative pain. And, as Mr. Jennings points out, for all of the informational websites around, there’s nothing like getting the perspective of someone who’s actually gone through the experience. For that I’m grateful to him for initiating this dialogue. Hope it will help the next guy!
— Hayes RothI also had prostate cancer. I am the poster boy of early PSA testing (age 50 normally, but age 40 if there is a history in your family). I tracked it for years, and at age 61 saw a spike. Went back a year later and it was up again. A biopsy revealed cancer in 4 of 12 cores. I opted for radioactive seed implants rather than prostatectomy a year and a half ago, and it seems to have worked, with PSA values down to less than 0.2 and falling. I still have “function” and urinary control, so I am looking like one of the lucky ones at every level. What kind of surprised me was how cavalier most people were when I told them, like it wasn’t “real cancer.” I was even told on several occasions how lucky I was to have THAT cancer - like if it were melanoma or lung cancer or breast cancer, then they would worry. When I would tell them it was the second leading cause of cancer deaths among men in the US, they looked at me like I was goofy and should stop worrying. Ah, progress! At any rate, I wish Mr. Jennings a long and happy cancer free life. My cancer diagnosis changed my life for the better in the long run, and I hope it does the same for him.
— Mike CEven in his pain, Dana can make you laugh. Our thoughts and prayers are with you this Thanksgiving week and always.
— Linda SterlingFROM DJ: Linda, it’s funny, I don’t feel “in pain.” I feel that I’ve found a very peculiar virtual haven, where every man has prostate cancer. All the best to you and your family this Thanksgiving.
The older I become the more cancer has entered my life. The circle of friends, family and the family of friends has grown in common with breast cancer, bladder cancer, colon cancer etc. The 10 lessons in this article may not be new to me but I find it helpful to see them listed together so directly.
Considering the tears brought on by “Do you want to know a secret” sometimes nostalgic glimpses through music and art can for a brief moment take us back to the hopeful past where the ideas of our future were clean slates without the random seeming attack to our emotional and physical well being.
I often counter the judgmental remarks of others with a quick…”what do you want from me…I’m 53!” It isn’t an excuse; it is an acknowledgement of an ever changing state of being.
— Michael SavoiaGood cancer, indeed! Oh, pity my 2 poor adult daughters! When I was diagnosed with my prostate cancer, my wife was in the midst of a 2 year chemo treatment for recurrent breast cancer.
Unexpected side effects, sure, had those. But perhaps it was my own good fortune that I did not have time to dwell on them.
I shrugged off my own troubles as quickly as I could. It was not a macho thing. I did this to minimize the burden on my wife and kids. One serious cancer patient at a time is quite enough.
Once my pathology report came back as completely contained, I was able to shift my attention to the real fighter in the house, my wife. I consider that I got off easy. Just got my 2 year check up and I am still fine. My lovely wife is also doing well. We have thus far survived to see our older daughter marry and our younger daughter graduate law school.
Richard Fertel
— RichardWest Caldwell, NJ
Thank you for taking the time to set these thoughts out. I (re) learned plenty of the important things about life during the quick read. All the best, and thanks again. (Off to calmly engage the rest of my day!!)
— ARGood ten lessons; one I might add - eat your broccoli. Apparently broccoli and prostate cancer aren’t good friends.
Also, I fully agree with your sentiments on our health care system. When people ask me why I want to leave the United States after I graduate, I respond, “I don’t want to spend my life being treated like a dollar sign.”
— t.k.fosterThanks for the column, which is all-too-true and all-too-human. My lesson’s from colorectal cancer, but along the same lines: Cancer can excuse most everything else, as when dining with a friend: “I’ll have the duck, I think.” “But it’s a heart attack on a plate.” “SO?”
Good luck on the adventure!
— Thomas LodgeSomeone very dear to me died from this horrible disease. As I read this, I was painfully reminded of the pain and fear that Larry experienced before he died. Made me cry, too. RIP Larry Moore.
— triciaHumor about the condition is very important since the people who care about us are probably suffering more [ in a different way] than we are. Having gone through the robotic surgey and post -op Radiotherapy I find myself fully recovered after having a “very ugly ” tumor according to my surgeon. If at all possible ,train up to the treatment- I did and believe it had a very positive influence on my recovery.
— JLWDana my man…Number 11 on the ‘refreshed’ version of this list is going to include time spent under the healing spell of your warm and sly attitude. This was (and is) a pitch-perfect gift for folks out here. Many thanks. - Tim
— TimI feel your pain. Having just gone through surgery, not prostate cancer, your experience clearly resonates with me. I must admit the vivid description of your experience
made me “cringe” a little.
Thank you for your honesty.
Joe S.
— Joseph S“radical open prostatectomy”, the cleanest, safest solution is still major surgery. All that you experienced, we have all experienced to one degree or another. It always helps to know you are not alone. It took me a good 18 months to be on my way to a full recovery, and I consider myself lucky beyond words. A younger friend with prostate concern has decided to “walk with the lord” instead of risking impotence and incontinence. I hope for the best for him but did advise him to have the full monty and get it over with for his family’s sake, if not his. Thank you for sharing your story with us.
— HaroldMost men will contract prostate cancer. As that includes me I am preparing for the day that I must accomodate these very experiences. They are not alien to life or opposed to life but are the very substance of being alive. They are part of the experience of being a man.
— jsbTo the author, to the nurses and mostly to the doctors I say thank you for helping me experience life for the longest time and in the most comfortable manner. I don’t look forward to sharing your slice of life but with your help I am prepared.
Ah, yes; what surgeons forget to explain. Thank God for the internet.
I had heart by-pass surgery and the cardiac surgeon forgot to explain that the main nerve in the leg (the area they took the vein from) would be damaged causing strange nerve sensations, pain and problems with the leg as well as extreme swelling. Add to that that they forgot tell me they ran an optical fiber up from the leg vein removal wound all the way to the groin causing massive capillary damage and bruising.
Then, I learned that the average lifetime for the grafts was ten to fifteen years (uh, nice to know).
Finally, and the real kicker was that in 5-10% of the surgeries fluid will fill the chest causing (later of course, when you are at home) the lungs to slowly be compressed, causing breathing (at night, while sleeping) to become difficult, and even fail! After an x-ray in the emergency room, of course (and believing that you are either crazy or something is seriously wrong) they realize that the chest has to be drained before the problem is solved (hopefully, the last time the patient will need this extra work. If you are unlucky like Bill Clinton, the fluid does not build up enough to be an issue (until heavy exercise) until months later and then only more surgery can now remove the ‘solid mass’ that was the fluid around your lungs!)
Before surgery (that is, if possible; I didn’t leave the hospital), go to the internet and try to discover all these possible complications so you can talk to the surgeon and be ready to deal with them (and critically, realize they are occurring!)
— DBrownI was fortunate enough to go to Memorial Sloan Cancer Hospital for my surgery almost three years ago. I had laposcopic surgery and am now doing fine. My big disappointment with my life now, no errections and needing a pad in my underware for the rest of my life. I feel healthy as a man of 58 can feel. I can enjoy my life to the fullest except for no more sex and needing a pad in my underware. I go for a blood test used to be every six months now once a year. a blood test. I am thankful everyday my doctor caught the prostate cancer in time and I am alive to tell others .
— martin durschlagInsurance, insult & injury. After my prostate cancer surgery, Blue Cross Blue Shield sent a reimbursement check, then stopped payment on it without notifying me…so I had to deal with bounced checks after I paid the physician. The replacement check was for the wrong amount, but fortunately…yes, fortunately… BCBS caught their mistake and called me while the check was in the mail. Only four months later, after countless phone calls and letters, did I get the insurance sorted out.
— MSIt is sad to say that all of this suffering is unnecessary. A successful drug has been delayed for over a year by the FDA.
— L. BonnProvenge was approved by the FDA’s own Advisory council in an overwhelming vote over a year ago, yet they seem to want more data in an endless refusal to approve a drug which has been proven successfur in three phase 3 tests and which has essentizlly no side effects.
Number 5 is oh so true. I found out i had prostate cancer during my wife’s chemo treatment for her cancer. She knew that some techs are “gliders” others are “pokers”. At a cancer clinic, the “pokers” are never asked for, you always ask for Helen, or Sara, or Denise, not Maggie. She was a poker, maybe she could be ok at a blood bank, but not the cancer ward.
I always ask the tech, are you a glider or a poker. They smile, then i know they know.
— Larry GWonderful words. I could write for days in response, but just want to say this. In 2000 our 12 year old son was diagnosed with Stage IV Hodgkin’s disease. Well in the next five years hardly a day went by when I didn’t cry or want to scream. Half the tears and every one of the screams came during or after phone conversations with the insurance company.
Considering how many people have had our experience with insurance, I find it utterly baffling that we have not had a massive march on Washington–or ten of them–for a better system of medical insurance and care.
All my best wishes, Mr.Jennings, to you and yours.
— James GoodmanWhile I am grateful for the author’s good spirits and hopefully positive prognosis, I say: Beware specialized medicine. Hasn’t it already been written that these radical treatments of prostate cancer may be very unnecessary?
I don’t think it should be left to the post-op patient to go
“Hey, nonny nonny, I’m gonna make it.” You bet the doctors didn’t tell you what it would really be like. Many are in$en$itive to all but making their buck doing what they told them in medical school would make them a buck. I had a hospital full of doctors trying to perform a partial lateral sphincterotomy on me (cutting muscles down there) for what turned out to be a bad case of irritable bowel syndrome which I cured with a diet. There is a UNIVERSE of difference between sitting in the doctor’s office discussing these procedures and, “you betcha”, the reality of waking up with the reality. Do your homework. Read up on the internet - there are sites with post-op patients telling what it’s really like…that’s what saved me. I wish all who contribute to this discussion who are dealing with cancer the best results and a Happy Thanksgiving. Flynn Falcon in LA
FROM DJ: Thanks to all the readers who are commenting. Another week, and another bounty of tales, wisdom and tips. We have to keep telling each other our stories. Tomorrow — the day before Thanksgiving — I get another Lupron shot, so I’ll guess I’ll be having hot flashes with my cranberries and turkey as we celebrate our harvest. On Thanksgiving, let’s all of us try to be thankful for what we can, especially our wives and partners who are indispensable.
Your kind words make me humble, but also make me recall my late college adviser at the University of New Hampshire, a wonderful writer named Donald M. Murray. Don always told us: “Write about what makes you different.” — and that’s what I’m trying to do.
— Flynn Falcon