talkingaboutcancer.com

Reading Lori Hope’s book ( see previous post) really highlighted for me how awkward it is when the subject of cancer comes up.  It’s one thing to talk about other people, but when it’s you or the person you are talking to who has cancer, it’s a whole different ball game.  When I was first diagnosed, I eventually told a lot of people and I was amazed at the variety of responses.  Some friends who I thought would be very empathetic and supportive were very uncomfortable talking about it while some casual acquaintances were amazingly warm and, well…. energizing.

I don’t really know what I expected, but I learned first hand what an uncomfortable thing cancer was.  It really is the elephant in the room.  If you have cancer, it is always on your mind, but I think other people don’t even want to talk about it.  Sure, friends and family want to know how you are and want to be supportive but, let’s face it, its not a happy topic.  Sometimes we don’t want to talk about it at all, but sometimes we just want the people we care for to acknowledge our pain.

So what do you say to someone you know who has cancer?  I’m sorry…..? You look good……? How are you feeling….?  If you have cancer, what do you want to hear from your friends.  Let’s hear your thoughts.

 Posted by Doug

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I just finished a fabulous book written by Lori Hope, a lung cancer survivor, entitled help me live … 20 things people with cancer want you to know. Lori wrote the book based on the results of a survey she conducted and the stories of many, many people whose lives she has touched through personal relationships, interviews and her extensive speaking engagements. As a cancer survivor herself, she has had a front row seat to many of the experiences she writes about, and this personal perspective gives the book a very special intimacy.

Notionally, the book is written for the family, friends and acquaintances of people with cancer but, as I read it, I could see my own experiences as a cancer patient and survivor mirrored in the stories of so many others. In so doing, it gave me strength from knowing that I am not alone.

Lori is one of the good people who has chosen to turn her own experience with his horrible disease into a positive force for helping all of us to cope and to live. I highly recommend this book to everyone touched by cancer. Check out Lori’s site at www.lorihope.com.

Posted by Doug

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Today, I met with the radiation oncologist to talk about “salvage” radiation therapy (hate that expression) to try to kill the cancer that has recurred in my prostate bed. Odds are that this is where it is, but I don’t know for sure. Either do they. So they’ll just fire the particle accelerator at me and hope they get it all. It’s a lot more refined than that, but the outcome is the same - I’ll only know for sure if my PSA goes down and doesn’t go up. I’ll be starting in a couple of weeks for 33 consecutive days.

I kind of knew this was coming but it all seems so much more real now. I’m stressed to the max just cuz it was such an intense day. The shock of a recurrence is one thing, and I’m feeling good that I’m doing something about it, but now I feel like I’m really living with cancer, or at least starting too. I think it’s going to be a long haul and I don’t know whether time will make it easier or whether it will accumulate. I guess we’ll see. I need to make time to absorb it all and to adapt. I really should be doing things like yoga and meditation and would welcome any other ideas or advice.

Posted by Doug

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When we are stricken with cancer, depending on which cancer, its stage, etc., we are faced with many choices. Choices of doctor, choices of treatment, choices to get second (or third or fourth) opinions. They are all terribly important choices that we have to make at a time when our lives have been turned upside down, and each of us will approach these choices in a way that is uniquely us. Many people are very analytical and will vacuum up as much information as possible in order to make the “right” choice. Others feel much more comfortable putting their faith in their doctor(s) because they don’t feel qualified to make some of these choices on their own. I think others may just get dragged along, hoping for the best.

Cancer is a game of numbers. Treatment options are based on statistical, historical studies of large numbers of people. If you happen to fall neatly into certain categories it may seem obvious which way to go, but we are all unique and no one can predict with certainty what will happen to us based on our choices. But we have to make them, because not choosing (or choosing to do nothing) is, more often than not, a death sentence. So we choose our doctors, we choose between radiation and surgery and chemo. Sometimes we choose when to start. And then we throw ourselves at the mercy of those who know what they are doing and who have our best interests at heart.

It is very, very important that we never second guess these choices. While you may be able to stop a course of therapy, there is really no way to reverse or go back. And since we cannot predict the future with any degree of certainty, we certainly can’t answer the “what if” questions. What if I had radiation instead of surgery? What if I had opted for high-dose chemo? What if I had insisted on adjunctive therapies? Maybe you have choices going forward, but you can’t undo the choices you have made.

So make your choices with the best information you can, with the strongest intent you can muster, and put your faith in those you trust. Its the best you can do. Never look back or second guess those decisions and choices. There is nothing you can do about it and it will tear you apart. You have enough to deal with without blaming yourself for “wrong” decisions. And if your original choices don’t work and the cancer recurs or spreads…… well, you did your best, and now you need to make new choices. Take what you have learned and move forward.

Posted by Doug

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After 5 years of undetectable PSA readings after my Prostate Cancer surgery, my annual blood test showed that it’s back. I was supposed to have really good odds of being cured, but I guess I fell into that small percentage. Now I’m looking at other, different treatments like salvage radiation therapy (what a name!) and hormone therapy. What I don’t know is whether these treatments will be able to get it once and for all or just slow down the inevitable. Life suddenly isn’t looking as long as it once was.

How do you handle something like this? My first diagnosis 5 years ago was hard enough, but at least I did something and thought it worked. This is something different. I’m not going to die tomorrow but, instead of living as a cancer survivor - wounded but back on top - I’m now going to be living with cancer and treatments and doctors and side effects. It just seems so big. It’s always on my mind. I thought that I would be able to handle it better this time around, but it’s damn tough. I have good days but I have some really nasty days. I’m going to attack this thing aggressively and that feels good but even though I am doing something, it only helps a little.

I have hope and I have a loving wife to shore me up. She tells me it’s okay to cry.

Posted by Doug

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I’m a 56 (closing in on 57 ) year-old guy. I went for my prostate cancer surgery yesterday at Oakville-Trafalgar Hospital..Thursday, October 25th…..opening day of the World Series. I arrived at the hospital fully prepared in terms of prep ( antibiotics, enema, Cialis etc.) at 6:30am with the operation scheduled for 8:00am. Getting ready, the anesthesiologist detected a concern in the x-rays. My urologist showed up and led me downstairs for a CT Scan which revealed that my thyroid is enlarged and pressing against the trachea. By approx. 11:00am it was determined that the surgery
would have to be canceled until I have the thyroid situation dealt with. They were worried that my airway might be at risk in the operation. While getting the CT Scan I was shaking a little either because I was getting scared or it was cold or both. Overall, while I was disappointed that the surgery didn’t take place ( to ‘get it over with’) I was pleased that they were able to catch the thyroid issue.

I checked out and went with my son and future daughter-in-law to Wholefoods and, having not eaten since Tuesday evening, devoured a great salmon sandwich with plenty of liquids to flush all the drugs and dye swimming around in my body.

I awoke the next day after an amazing non-stop sleep of about 7 hours…..normally I’m up 1-2 times through the night. So now I am regrouping and getting ready for the next phase of this adventure. I have a good throat/neck surgeon on board and I am just waiting to hear about a date for the thyroid surgery so I can re-set the prostate one.

I am on a medical leave from teaching high school so I am keeping busy just keeping the proverbial house in order. Now I face another challenge but I’m ready to face it. I’m just worried that the longer it takes the prostate issue certainly does not go away or presumably get better regardless of selenium
dosages. I’m confident and active - I’m working out every day ( hiking, stretching, biking, curling).
Having the surgery cancelled means more time with friends to celebrate life.

Stay tuned………

Posted by Mike

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Last March my mother was killed (along with another innocent bystander) in a bizarre & tragic roadside accident. Our family has been having a hard time dealing with this over the past 6 months obviously, in particular my father - who now lives alone. My sister & I and his friends are there for him, but it’s just not the same for him as you can imagine. And then the unthinkable happened…

My dad was diagnosed with prostate cancer.

I have stopped trying to make sense of why so many terrible things have happened to our family in the past year, because it just leads to anger & frustration. The only thing I can do now focus on the positive of the situation at hand; “at least it’s not lung cancer or a brain tumor!”. And even though most people say “well it is one of the most curable forms of cancer” it’s still hard for me not to be pessimistic the way things have been going.

His urologist says it is 90% likely that removal of the gland will result in a cure and he will live another 30 years. I hope he’s right. On the bright my dad is in otherwise great health and great physical shape which should bode well for his recovery.

His surgery date is October 25th @ 8am. I’ll be sure to write again post-surgery to share how everyone is doing.
Posted by David

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……….This is our first guest post. It’s an older post from Amanda, whose own blog (see link below) inspired the creation of this blog.

Just when i thought i was wizened and hardened and impervious to all shocks, comes a phone call that just about brought me to my knees.

12:15 am…hubby is lying peacefully in bed, oblivious to the world, and i’m doing my usual late-night web surfing. at that late hour, the ringing of his cell phone was definitely enough to snap me out of complacency. i got up off of my duff and looked at the caller i.d….”unknown.” ok, probably just a wrong number, a drunk dial, or both.

as soon as i set the phone back down it rang again. i opened the phone, fully ready to let the poor person on the other end HAVE IT. when the unthinkable words come out of the receiver…

“hello?”

“yes, this is a nurse from kaiser…is [hubby] there?”

“well, no, he’s asleep, it IS a quarter past twelve here.” (we have recently been getting calls from the billing department of kaiser hawaii, and i thought that maybe it was someone who wasn’t aware of the time difference.)

“this is his wife,” i continued, “can i help you?”

and then the nurse spoke those words that have plagued my nightmares ever since the bone marrow transplant. “no, i need to speak with mr. shaffer, it’s an emergency situation.”

all of my “how-dare-you-call-us-this-late-at-night” bravado disappeared like a popped balloon. deflated, i took the phone back to the bedroom and fought the old feelings of panic and dread.

“how bad is it?” i whined.

“ma’am, i really can’t discuss this with you unless i have his permission…you are aware of HIPPA, aren’t you?”

(at this point i became convinced that this nurse is the biggest bitch this side of the atlantic.) woke hubby up and told him “oh-my-god-it’s-a-nurse-from-kaiser-and-she-says-it’s-an-emergency-and-she-won’t-tell-me-
what’s-wrong-i-don’t-know-why-we’ve-signed-so-many-fucking-release-forms–”
hubby snatched the phone, and after a whole lot of sleepy “yeahs,” “nos,” and “i don’t knows,” he snapped the phone shut and gave me the biggest eye roll EVER.

“my red cell counts were a little low, and the nurse called before she looked at my medical history. no worries, babe.”

that’s it?!? his red cell counts a little low?!? i know that many people would expect me to be outraged at the nurse who saw fit to call about a medical condition before she got the context…

…but THANK GOD that’s all she had to call us about. THANK GOD it is not back. THANK GOD he is still OK.

Posted by Amanda (originally posted on http://cancertalk.blogspot.com)

We are sad to say that Amanda lost her husband, Eric, to leukemia last year.  Our hearts go out to her. (Doug)

- See Amanda’s new blog at http://the-cat-lady.com

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The day, the hour, the minute you are diagnosed with cancer is the beginning of a long, arduous and often painful journey for you and those who are close to you. Regardless of the physical type of cancer you have been afflicted with, you now have to deal with an emotional disease, unlike anything you’ve had to face before. You’re body is trying to kill you! How’s that for a trip? What does that do to your sense of immortality? What’s really important now? These are all huge issues that will affect you in profound ways, but we all seem to be poorly prepared to deal with them. And not just us, but also the doctors whose job it is to diagnose us and then drop the bomb. What do we do when we are blindsided like this?

For me (and I suspect for most), the initial diagnosis was a blur. I certainly wasn’t expecting it (I was told that the lump on my prostate was “probably nothing”), but I definitely wasn’t in my normal analytical mode. My appointment was first thing in the morning after a long weekend and, while I know I ruined the doctor’s day, it sure started mine off with a bang. I was in a suit on my way to a meeting with clients. I was expecting to be told that it was nothing, so this hit me like a lightening bolt. The doctor read me off a bunch of facts and laid out several options to consider and then sent me on my way. I stopped by the house to tell my wife and then left her to go to my meeting. I had a bomb dropped on me and then I dropped one on her and left! I didn’t realize the significance of that until much later. Bless her for not reaming me out, because I deserved it. She had just been diagnosed with the same emotional disease as I, and I went off worrying about myself! Does that make me a selfish boor or is that “normal”?

For the rest of the week, we both dealt with the diagnosis in different ways. I told no one else and I completely avoided focusing on it. It was there, but it was like a dark cloud hanging over me that I refused to really acknowledge. Denial? Shock? Normally, I would be all over the Internet and in the bookstore researching everything I could find, but I didn’t even hit a website until the weekend. Meanwhile, my dear wife was buying books, phoning support groups, contacting doctors, all on my behalf. She was looking for help for me, not even thinking that she may need help too.

So I ask you – how could I have handled this better? Do you think you need some denial time to allow yourself to adjust to this new reality? Should I be chastised for treating my wife badly? Do I really need to feel guilty about this?

Let’s leave the doctors out of this for now (we’ll deal with that more specifically in a future blog). Let us know your thoughts. Tell us about your immediate post-diagnosis experience. Was it the same? Was it worse? What are your thoughts on how to handle the impact on our loved ones? If you are the spouse, child, lover, parent or friend of a cancer victim, what are your thoughts? What were your experiences?

Let’s talk.

Posted by Doug

4 Comments »

I personally was not diagnosed with cancer, but I am a victim of this horrible disease. Too many of my relatives, including my husband, sister, and sister-in law have been hit with cancer. As a small child, both of my grandfathers died from cancer. One had lung cancer that spread to his bones, the other had leukemia. At the time, I didn’t quite understand what “cancer” was or meant. Whenever my parents or anyone else spoke of “cancer” it was with hushed tones…why? I just knew I didn’t want it.

As the years passed, and cancer didn’t impact on my family or friends, life was good. Cancer didn’t seem quite as scary for a while.

Then, in the fall of 1996 my sister was diagnosed with what we thought was lung cancer. She called me to tell me something was off about her tests and further investigation was required. The biopsy she had showed that she had cancer and required the removal of part of her lung. She was pretty scared. We were all very hopeful, but then got the news that the cancer was actually melanoma that had metastasized. Our world was about to change in a very big way. My wonderful husband arranged for our family to move back to Toronto, where my sister lived, and rented the house next door to her. This enabled me to go back and forth with ease to help her and her family. You have to understand how I felt about her…she was really like a Mom to me…I couldn’t lose her…we were going to grow old together. In Sept of 1997 she lost her battle with cancer. Everything has changed now that she is gone. The impact of losing her affected many people. She was a truly loved and remarkable woman. She was the core that held our side of the family together and now that is gone. I miss her so much and not a day goes by that she isn’t in my thoughts. Cancer changes families. It’s like a hurricane that lands with mass destruction and takes away whatever it wants. This Sept is the 10th anniversary of her passing…it doesn’t feel that long. Life does go on. Her husband remarried. Her children married and now have their own children. She would have been a great grandmother. My sister lives on in all of our hearts.

Since then, my sister-in-law and my husband have been diagnosed with cancer. Thankfully, they are still with me and I never take for granted the time we have together. My fear in life is that if I should ever get cancer, will there be someone there to take care of me?

Posted by Dianne (guest post)

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