Happy Thanksgiving from Susan

  Wishing everyone a very Happy Thanksgiving! I love this holiday! Always filled with family, good stories, good food and very good times. I...

Tuesday, November 29, 2011

My mom just got diagnosed - I am so scared. She sees the surgeon on Monday to schedule a bilateral mastecomy. What should I expect and what can I do?

Asked by 
 Family Member or Loved One 11 days ago

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Stage 3C Patient
Hi Kim, I'm sorry to hear about your Mom. It's wonderful that she has a caring daughter like you! :). I just had my bilateral mastectomy on Oct. 24th and am still recovering. Usually the hospital stay is just overnight. She'll have 2 or more drains that will need to be emptied periodically and the fluid measured when she returns home. Her dr and/or nurses should explain the correct way to do this. You could help her with this. She won't be able to lift anything over 10 lbs or drive for a few weeks. Also taking a bath with the drains can be a little tricky at first and might need some help. I took a long shoestring and tied the drains up ( like a necklace). This kept my incisions dry and drains out of the way so I could bathe. If she has a recliner ....that would be a great help. She won't be able to lie on her side to sleep for awhile and my recliner was a lifesaver for me as far as being comfortable! If not....then several comfy pillows so she can prop herself up would be good as well. All those things will help her as well as helping her with meals. Emotionally it's difficult losing your breasts. It will be an adjustment for her. Give her lots of TLC. :). I'll say a prayer for your Mom and best wishes on Monday!!

How to be happy

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Do the things that happy people do.

Some might say that happy people do certain things BECAUSE they are happy. Others might propose that many times doing these things can MAKE people happy. My own personal opinion is that it is probably a combination of the two.
My regular readers know that I suffer with depression, though under control now with medication. Even in a depressed state, by doing some of these things listed below, you can affect a change in your mood. If you begin acting AS IF, you will probably start to feel that way. Regardless, it can’t hurt to try, now can it?

6 things that happy people do (and you should too!)

Happy people express gratitude and thankfulness for what they have in their lives. We all have things to be grateful for, even in the darkest of situations, one can usually find things that they are appreciative of. And when you start to show appreciation for something in your life, it tends to open your mind and heart for you to receive more.
Avoid comparing your situation to those around you. There are a lot of people who are doing better than you are and if you focus on them, you will continue to stay down. If you want to compare yourself to anyone, compare yourself to those who have things worse than you. If you live in America or another developed country, you are better off than most people in the world. (see #1)
Learn some coping strategies for dealing with stress. Think about how you respond to stress. Do you get in a panic? Learn to breathe deeply when you feel that panic rising up. Do you overeat? Learn to munch on celery sticks or go for a walk instead. Do you get angry? Consider how your response is not productive and instead think of some action items you can do about the situation instead.
Learn to enjoy the things of life. I don’t necessarily mean the big things. Open your eyes to the little things, such as: the smell of coffee brewing, the fresh air when you step outside in the morning, the big grin when you get your little one from the bed in the morning, the loving look you get from your partner. One way I like to do this is to buy fresh flowers often (I look at the clearance buggy at the store!) I put them on the island in the kitchen where I can enjoy them throughout the day.
Connect with your higher power. For me, that is with God. I understand that others may ascribe to a different philosophy, but there are some similarities. Belief in something bigger than yourself gives you a sense of purpose and meaning in life, something to strive for, to make something of yourself by helping others. People who are not happy tend to be focused inward, if you believe in something bigger than your life, you will begin to focus on those around you and how you can contribute to their life.
Take care of your body. I am not saying you have to be an athlete, but get into the habit of moving on a regular basis. Increase your heart rate a few times a week. Doing so increases the endorphins in your body which helps lift your mood overall. Regular exercise has been shown to do as much good as antidepressants in some  people, with no side effects.

Monday, November 21, 2011

Patient & Caregiver Mentoring Program
 
Have you had a cancer diagnosis? We have too…
Connect with a 4th Angel and talk to someone who understands.

Learning that you have cancer can be an overwhelming experience – one that leaves you frightened, vulnerable and alone. The 4th Angel Mentoring Program offers free, one-on-one, confidential outreach and support from someone who has successfully made the same journey you are about to begin – the journey towards recovery.

This specially trained volunteer and cancer survivor – your 4th Angel – is someone who will talk and listen in a supportive setting. The 4th Angel Mentoring Program is telephone based, so you can be connect with an angel anywhere in the country.
 
4th Angel Mentoring Program is part of The Scott Hamilton CARES Initiative, a national non-profit organization.

Hope

Have you ever experienced such intense sadness you couldn’t imagine ever feeling hopeful about ANYTHING again?
Maybe, like me, you once stood in the corner, gulping your champagne, at a New Year’s Eve party you wished you had skipped. As you watched your friends laugh at a shared joke, you held the corner of a Santa Claus cocktail napkin up to your eye to catch a pregnant tear before it escaped and ruined your perfectly made-up (fake it until you make it) face.
I don’t know about you, but I have had my fair share of dark, bottomless pit kind of days and all too often, I have looked for the lever to the secret trap door that would drop me down through the levels of despair and into the place where the future finally had more light than dark.
Unfortunately, as my therapist has told me, on more than one occasion, the only way past the pain is to walk right through the white hot centre of it.
But, before this post makes you want to reach for the dull switchblade on your 25 year old Swiss Army knife, here is a simple but powerful quote that has helped me through some of my toughest days:
“Extreme hopes are born from extreme misery. ~ Bertrand Russell
In the last year, I have become a cultivator of hope. Yes I know what you’re thinking. Hope doesn’t make the misery go away or instantly transport you into a mythical utopia where unicorns frolic and vibrant rainbows ignite the sky. But, for me, hope is like holding onto a thick rope while walking through a dark cave. You can’t yet see anything, but you know that if you keep walking and keep holding the rope, you will eventually emerge out of the cold dampness of the cave and into the warmth of the afternoon sun.
For me, a tiny speck of hope has led me on an incredible journey from a NYE party when I pretended I wasn’t crying into my napkin to Africa to right here where I sit in a bustling coffee shop overlooking a busy New York street.
Less than a year ago, I was so deep in the cave of despair, I couldn’t see a way out. My boyfriend had broken up with me three weeks before Christmas, everyone kept asking me if I was “excited” about my upcoming final surgery, my best friend and I had a falling out because she couldn’t figure out why I was so negative and sad all of the time, and I was terrified of telling my boss that I didn’t want to go back to my old job as a Recruitment Consultant at a leading technology agency. I felt completely lost and alone.
Then, on a cold New Year’s Day walk, I got to thinking about the word “inspired” and how I wanted more inspiration in my life. In that exact moment, I felt the spark of hope ignite.What if I could do something so big that cancer would no longer be the most recent story in my life? I thought.
This question led me to an impulsive decision to travel and volunteer in Africa for 10 weeks. My experience included caring for a beautiful group of 1-3 year olds at an underfunded daycare in the Townships of Cape Town and then having the chance to traverse through the sand dunes of Namibia, the rivers of Botswana, and the waterfalls of Zambia. Those ten weeks filled me with more joy and hope than I could have imagined possible. Now, I’m on an even crazier journey of hope. But, that is another story…
For now, I won’t oversimplify it by saying I’m grateful for the misery in my life because loss is painful and some of us have had to endure far more than our fair share. But, what I am grateful for is that rope of hope (pardon the rhyme) that helped me put one foot in front of the other, when I didn’t know how I would make it. I’m grateful for the people in my life who held the rope from outside the cave. The people who didn’t try to fix me, or minimize my feelings, or placate me, or even rush me through the experience, but who just stood there. Holding the rope and reminding me ever so gently that someday, somehow, I would make it back out into the light.

Friday, November 18, 2011


What a Woman Wednesday, Oct. 26
What a Woman Wednesday,  written by Rikki Fayne- pre-vivor

One of the defining moments of my adulthood is the death of my mother.  I was 30 years old, and I had spent the most of my 20s watching my mom fight breast cancer.  It’s almost impossible for me to remember a time when my mother wasn’t fighting. 
 

I have always taken the health of my breasts very seriously.  I was getting yearly mammograms at 25 years old.  At that time, not much was known about the heredity of the disease.  Not that it would have mattered much to me.  My mother was adopted.  My health history went back to her.  That’s not much to go on.  But when I was about 35, several things happened.  I became a single mother by choice of a beautiful little girl, and testing began for the BRCA gene.  I spoke to my OBGyn at a yearly visit, but she did not think testing was necessary.  The odds of my having the gene was slim to none.  So, I went on with my life.  I had another baby girl, and testing became more common. 
 

First, let me say…I am a firm believer in testing.  Information is power.  But do you know what you want to do with the information?  That’s an important question to answer.  So, if I got tested, what would I do with the information?  What if I was BRCA positive?   Several factors made my decision easier.  First, I had 2 children.  Living a long life was very important.  Second, my breasts had already nursed 2 children…their job was basically done.  Finally, without a spouse, I didn’t really need to worry about the psychological effects of a mastectomy on anyone except me.   So, the hard decision was made.  If I was BRCA positive, bye-bye breasts.  I was oddly matter-of-fact as I marched to UCLA to give them my blood. 
 

Even the genetic counselor told me the odds were in my favor.  Very few people carry the gene mutation.  I nodded, then held out my arm.  It was the first week of October, 2009.  Results seemed to take forever (don’t they always when you’re waiting?) but sooner than I expected, I got a phone call from UCLA. Her first comment to me was “Wow, you called it.”  That was all I needed to hear.  I knew what the result was.  So…where do I go from here?

My decision was simple (for me, anyway).  I spoke to the UCLA Breast Center and got referrals to oncologists and plastic surgeons.  For my family, the decision wasn’t so cut-and-dry.  Both my parents are gone, and my family (aside from my children) was a tight group of cousins, aunts, and uncle….and one brother.  I did not have to worry about the effects of my surgery on a spouse, but I was surprised at the effects of my surgery on my brother.  My cousins, aunts, and uncles were very supportive.  They asked lots of questions, but never doubted or questioned what I was doing.  My brother….that’s another story.  He immediately jumped to “don’t do anything drastic without talking to a doctor.”  Really?  Did he think these test results fell out of the sky?  Who did he think I’ve been talking to?  He sent me emails of articles that implied there was no reason to have surgery, and that simple vigilance was all that was needed.  WHAT?!!!!!  Oy…..his reaction was not what I expected.  He was so disapproving of what I planned that he stopped talking to me.  When my cousin called the day before my surgery to make sure he knew I was going to the hospital, he acknowledged knowing but not approving, so he had no desire to hear anything.  At the time I am writing this, it has been almost 2 years since we have spoken.  He does not respond to birthday wishes, and holiday cards have no personal greeting on them.  I think his wife sends them.  So, while I am disturbed by his reaction, it does not stop me.  I must make choices that are best for me and my children.  
 

So….jump to July 2010.  After  consultations and pictures and more consultations, I woke up early and took one last look at my breasts.  I tried to imagine what they would look like after the surgery, but couldn’t picture it.  I was nervous about general anesthetic (who isn’t?) but I had faith in the doctors I had chosen.  I wish I had something exciting to write at this point, but sorry…I’ve got nothing.  I had a lovely IV relaxant (once that started, really I could care less about the surgery….delightful), was taken into surgery, and woke up about 10 hours later with new breasts.  Really….that’s it.  In one surgery, one doctor took my breasts off, and another removed a portion of my stomach and recreated new breasts.  Isn’t modern science amazing?!  New perkier breasts and a tummy tuck.  The pain was not what I expected…not better or worse, just different.  Each hospital has it’s own protocol.  A friend had the same surgery at UCSF and her experience was only slightly different than mine.  The nurses were amazing, understanding, and helpful.  Getting out of bed was excruciating, but necessary.  After 5 days, I was discharged.  I was told that by day 7 or 8 after surgery, I’d feel almost 100% better (better being a relative term).  I arranged to spend the first few days at my cousins home (where my children had been staying).  And this is when things did NOT go as planned.

That night, my right breast just started swelling and feeling tight.  There’s not other way to explain the feeling.  I didn’t notice a change in the color of the tissue (something I was told to look for).  The doctor said some swelling was normal, and as long as the color didn’t change, I should relax and call in the morning (really…it’s not a cliché…he really said that).   In the morning, I had a small breakfast (in hindsight, not my best decision), and started to get dressed.  I noticed that the center of my breast was a bit more purple than the rest of the breast.  We called the doctor and decided to head to the hospital.  Now, let me say now that I tend to overreact when it comes to my health.  I worry about everything.  My cousin is just the opposite, which is good for me.  I felt bad that she had to drive me to the hospital, and she was calm and confident that things were fine, but knew I needed to be reassured.  Neither of us expected what came next.

At the ER, my plastic surgeon’s resident came in (a very nice young man) and pulled out the little machine that listens to the blood flow in the new breast tissue….it was a lot quieter than I remembered from my hospital stay.  Wait…quieter isn’t the right word…it was silent.  So silent, as a matter of fact, that he immediately called the doctor (did I mention it was a Sunday and 4th of July?) who dropped everything and came in.  I was able to make a quick phone call to my children to explain that I wasn’t coming home right away, then I was whisked away.  Have you ever seen those medical dramas where the camera has the point-of-view of the patient and you see the ceiling tiles flying by?  That’s exactly how it was.  I was awake for a lot more than I was the first time…way more aware of what was happening and the urgency that was absent the first time.  It took 4 different anesthesiologists to get the IV in me…I don’t say arm, because honestly, they would have put it anywhere they could find at that point.  Apparently, I have bad veins.  I guess they finally got it, though, because I don’t remember anything after that.  But remember that small breakfast I mentioned earlier?  It’s about to come back to haunt me.

When I woke up, all I remember is not being able to swallow comfortably, which did cause a feeling of panic. Something was in my throat.   Apparently, when you aspirate during surgery, they must reinsert the breathing tube and cannot take it out until you are fully awake.  I will sum it up this way….waking up with a breathing tube sucks.  I wanted it out, but was scared of what it would feel like to take it out.  It seemed like I was in recovery forever.  I remember I kept hitting the call button hoping for help, and the nurses were wonderful, but obviously I was not their only patient, and I had no concept of time anyway.  But eventually, the tube came out.  I don’t remember much so it was probably not as bad as I was worried about.  I just remember that night…..the pain was localized in my right breast, shoulder, and arm.  It hurt to move my arm at all.  It wasn’t until the next morning that I learned they could not save the breast.  Okay…was there any upside to this?  Well, after a few days (which would have been day 7 or 8 after my original surgery….does that ring a bell?) I did notice that every other surgical area felt a lot better.  Getting up by myself, using the bathroom, etc, was easier.  I was able to take short, slow walks around the hospital.  I could well imagine that if not for the hiccup of my blood clotted breast, I’d be very happy right now.
 

Okay…so fast forward a bit…..the surgery did not come off exactly as anyone had planned.  Instead of two new perky breasts, I was Rikki, the one-boobed-wonder.  Not the outcome I was hoping for.  However, if I learned anything from my parents, it was to have a sense of humor.  So, laughter and self-deprecation of my situation did wonders.  I pulled myself up, dusted what was left of me off, and made a new plan.  I was not that keen to have implants, which was why I chose to have the FLAP surgery, but since they could not determine why the breast clotted, I did not want to risk another surgery, so I started the process of a breast implant on the right side.  It was a bit bizarre, having them pump saline into the expander, but not painful.  And the following December, I went back in, had the implant put in, and the second phase of my original surgery.  Apparently, the BRCA gene also increases your risk of ovarian and uterine cancer….and I was not willing to risk ovarian cancer.  I was already peri-menopausal prior to the surgery, so I was perfectly willing to throw myself into full-fledged menopause if it meant no ovarian cancer.  I had two c-sections, so I was not worried about this surgery at all.  So, what did I learn?  Apparently, surgery on your stomach can make your shoulder hurt.  Really…it’s called deferred pain and it was NOT pleasant.  Air bubbles in your stomach travel up and get lodged in your shoulder.  Pain meds don’t work, but heat was amazing.  I practically lived with my heating pad for about a week.  But after that, I felt great.  My kids were wonderful and helpful (as much as a 9 and 6 year old can be), my family was awesome, my co-workers helped out in any way they could, and my temple family supported me in any way they could….although still no communication with my brother. 
 

I think it’s important to mention that as I looked back to the past 6 months (really?  Was that all it was?) it’s important to say one thing.  Even knowing what I know…..the pain, blood clot, breathing tube, etc…I’d do it all over again.  Let me say that again….I’d do it all over again.  Except maybe I wouldn’t have eaten breakfast that morning.  But once the breasts were gone, I felt like a giant weight had been lifted off my shoulder…or maybe off my breasts.  I was not worried about finding the lump.   Yes, there was always a small chance of still getting breast cancer, but really my odds are less than the general population now. 
 

My only worry, as I look at my two daughters, I wonder…..did one of them inherit the bullet?  How do you talk to a child about that?  At what age do you start to have that discussion?  These are questions that I still struggle with.  My girls don’t connect my surgery to themselves yet, but I know that day will come.  So my journey is not over.  I am confident that when the time comes, I will be able to talk to my girls about this part of our family DNA, and I will walk the path with them as they make their own choices.   I do not regret the path I chose in any way.  I am very happy with my decision.

…and they all lived happily ever after.

http://blog.savethetatas.com/2011/10/what-woman-wednesday-oct-26.html?spref=tw

Saturday, November 12, 2011

A Short History of Cancer

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Many people think of cancer as a modern disease, but it's not. You might be
surprised at early knowledge and early treatments, and how they've both evolved.
Learn more at http://www.facingcancertogether.witf.org

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Depression and Cancer: An Insider’s View

A shattering silence.
Oh, the nonsense we cancer patients have to put up with…
It’s not bad enough that we have to endure being slashed, burned and poisoned, but we have to endure unsolicited opinions, advice and ignorance about our emotional response to being slashed, burned and poisoned. All of which can leave us feeling as though no one understands how we are feeling, or wants to understand, or has any practical assistance to offer that might help us sort out how we are feeling. Some of us never find anyone to whom we can admit how hopeless, frightened, numb, grief-stricken and just plain sad we feel. And that can force us to exist behind a kind of force field of emotional pain from which it is difficult to escape, that our caregivers and physicians may not even acknowledge or recognize.
No matter how much progress has been made in the last several decades in the diagnosis and treatment of emotional and psychological disorders — and it has been considerable — there is still this stigma about admitting that we’re just not okay. Frequently, we blame ourselves for how badly we feel. ‘What’s wrong with me?’ we might ask ourselves. ‘Why can’t I just get out of my own way and shake this bad mood I’m in?’
I’ll tell you why. Because it’s not just a ‘mood.’ Because there is something wrong, but it’s frequently not what you or your spouse or your friends or even your doctors think it is.
The accidental depressive.
I grew up in a family in which every member suffered from depression at one time or another, or even most of the time. Yep, that’s right. I was an only child, which was not particularly helpful in such a circumstance. My mother suffered from lifelong chronic depression, with exacerbations and remissions sort of like multiple schlerosis, along with what I later recognized as a persecution complex and a paranoid personality disorder. My father suffered from what was probably dysthymia, which is a more moderate, sometimes low-level depression that exists as a kind of background noise. So, what chance did I possibly have to escape feeling depressed myself? None. I was a resourceful kid, so I managed somehow, but I remember having to beat back some very dark stretches of emotional misery even in grade school.
This was all happening in the late fifties, when I was a small child, and continued through the sixties and seventies. And it was still the dark ages as far as treatment was concerned. Back then, ‘mild’ depression might be treated with tranquilizers. And believe me, the last thing you need when you find it nearly impossible to get out of bed in the morning is a tranquilizer. More severe cases might get electroconvulsive therapy, aka ‘shock’ therapy, which was crude and painful and often left patients with cognitive and neurological disabilities. Great. My mother refused to be properly evaluated, and it’s probably just as well, because I’m convinced that the treatments she might have been offered would have made everything worse. My father’s medicine of choice was, for many years, alchohol, which is also not very helpful, but common. He finally kicked that when I was about ten, because one of his best friends and drinking buddies nearly destroyed every aspect of his life with alchohol, while the mother of one of my best childhood friends died of alcoholism, by means of liver cirrhosis. Nothing like life-threatening consequences to scare someone sober.
Now, many of you will read this, and think, understandably, that our family life must have been a full-out disaster. It wasn’t. My parents were actually highly functional, remarkably enough. My mother held a job from her early twenties until her early thirties when I was born, my father was never in danger of losing his, we lived in a small but nice house, I had clean clothes, enough to eat, and we had a lot of fun sometimes. They took me to museums and concerts and the theater, they read to me, played games with me, invited my friends to sleep-overs, mowed the lawn and washed the dishes and went to church, like normal people. We looked like your average family, except for the times when my mother was accusing the neighbors of conspiring against her, when my father was coming home drunk after his nightly visits to the local pub, when my parents were screaming and throwing dishes at each other during one of their dinnertime donnybrooks.
Fortunately, counseling therapy began to improve by the time I got to high school, so I availed myself of some. I remember that during my very first visit to a free clinic in Harvard Square, when I sat down with the psychologist and she invited me to tell her what brought me there, I burst into tears and cried for about ten minutes straight. I’m surprised it was only ten minutes. That was about 1970. There were some halfway decent tricyclic antidepressants by then, and some early understanding of the role of neurotransmitters, but the average depressed-but-functional person did not usually get them unless they were hospitalized or attempted suicide. It wouldn’t be until 1987 that selective serotonin reuptake inhibitors hit the market and gained wide acceptance. [see A Brief History of AntidepressantsTime Magazine.]
Once I left home and got a job with health insurance, but before the advent of SSRI’s, I found a wise, intelligent, compassionate psychologist who got me through the ’70′s and ’80′s by helping me gain some insight and develop a bag of tricks that got me through the profound wilderness of recurring depression, including one particularly bleak period that included agorophobia and suicide ideation. By the time I experienced that unpleasant crisis, I was an experienced and well-therapized patient, and I was able to recognized my behavior and thoughts as symptoms, not take them personally, and reach out to my therapist for some extra emergency sessions. By 1994, when my mother died, and my grief threw me into one of those characteristic ditches during which it took all the willpower I could summon to get out of bed in the morning, I finally took an SSRI, zoloft, and heaven bless me, it worked!!! After years of employing my considerable and creative strategies for getting through my bouts of depression, it was nothing short of a bloody miracle to feel the clouds lift due to nothing more strenuous than taking a pill every morning.
Busting the blame game.
I’m telling you all this because I’ve become something of an expert at recognizing and dealing with depression — my own, as well as other people’s. And along with that, I’ve also become something of an expert at recognizing all the myths and misconceptions that people foist upon themselves and others who may be suffering from depression. When I was diagnosed with cancer, I considered myself lucky that I was so well-equipped to at least be able to forestall most of them. But I know that many cancer patients aren’t so lucky. So, I want to share some of them with you.
1. What am I doing wrong?
Don’t blame yourself. It’s not your fault for feeling so wretched. It’s an imbalance in your neurochemisty. Really. Depression is an illness. A treatable illness. Yes, it’s not fair to come down with another illness when you’ve already got cancer. But it happens when we are traumatized. Losing a job, losing a loved one, losing your home in a fire or hurricane, being flat broke, having a heart attack, having a knee joint replacement, having a car accident, going through a divorce, getting cancer — any one of these things can throw us off, plunge us into fight-or-flight overkill, tax our immune systems, rearrange our brain chemistry, and cause depression. There has been much more research in the past few decades into the physiological processes that occur in our bodies resulting from extreme stress that has demonstrated the links between traumatic events and depression. Here is just one editorial article that outlines some of them: Causal Mechanisms and Links Between Trauma and Health.
2. It must be a character flaw.
This is entirely false. I run into this one in a lot of my older patients, who are from the ‘pull-yourself-up-by-your-bootstraps’ generation. But the belief that the onset of depression symptoms is the mark of a weakness of will, or a flaw in one’s character, continues to be pernicious, even among healthcare clinicians who should know better. Indeed, I think for many people, it takes remarkable strength of character to face up to depression, get help, and live well in spite of it. A lot of intelligent, successful, accomplished people have battled depression, people like Sixty Minutes journalist Mike Wallace, novelist William Styron, Mad Men actor Jon Hamm, acclaimed actress Ashley Judd, Olympic gold-medalist Amanda Beard, to name but a few. These are not people who lack character. They are human beings who suffered an illness from which none of us is exempt.
3. Maybe it’s my personality.
While there are, indeed, disorders of personality, like the paranoid disorder that my mom had, what we perceive as personality in everyday terms is the complex and intriguing combination of thoughts, social behaviors, beliefs, and responses to life that each of us presents to the world. Even the most seemingly boring person has a personality, if not perhaps a particularly interesting one. We may be extroverts or introverts, we may be humorless or silly, but there is nothing intrinsic in any type of everyday personality that sets a person up for depression. We humans are not one-dimensional, and neither is life. We can laugh, feel sad, be surprised, express compassion or erupt in anger, all in the same day, sometimes even at the same time. There’s nothing to be gained from picking apart your personality — or in being picked apart by others — because you feel depressed. There is no point in comparing the way you feel about having cancer to the way someone else feels about having cancer. And there is certainly no sense whatsoever in comparing how you feel about having cancer to the way someone elsefeels about your cancer.
One thing you can count on for certain: there is no one way, no ‘right’ way, to feel about having cancer. In fact, anyone who claims to feel that having cancer is the best thing that ever happened to them is someone who is truly deluded at worst, or woefully inarticulate at best. There are people who claim that cancer itself is a ‘gift,’ but I doubt they’d want to gift-wrap cancer and present it to someone they love.
But one thing is always true: however you feel about having cancer is perfectly valid, nothing more, nothing less. And anyone who tries to tell you how you should feel needs to shut the hell up. The thing we all need for whatever we feel is validation, compassion, understanding, acknowledgement. We need to be listened to, not judged. And when we feel overwhelmed by our feelings, we need support, kindness, and competent help.
4. Maybe I have the wrong attitude.
Oh, don’t get me started…
One of the worst things about having breast cancer — or any kind of cancer — is being flogged about being ‘positive’ by the folks who have evidently swallowed what I call the Pink Koolaid. This is merely a variation on the themes in the previous section. Some people seem to think that they have the right to tell us exactly how we should feel, what we should believe, what kind of attitude we should have, which, naturally, is sure to make a difference in how successfully we recover. So, I guess the 40,000 women who died of breast cancer last year had the wrong attitude. Bollocks. This is nothing short of tyranny by delusion. The best response to people like this is to recognize them for the rabid creatures they are, grab the nearest chair and perhaps a tranquilizer dart gun, and beat them out the door before they start foaming at the mouth. These people are dangerous. Just being with someone like this for five minutes makes me depressed. If all else fails, you might try calling your local Animal Control Officer.
Beyond the myths.
1. Recognizing the monster.
One of the most remarkable experiences I’ve ever had was the first time I found myself having thoughts of suicide. Because I was no novice in the realm of depression by then, I was luckily able to realize that they were only thoughts, and that these thoughts were symptoms, that they did not represent a genuine desire on my part to end my life. But I was informed and educated about this. I did not take it personally. I was, despite being depressed, a happy, fun-loving, occasionally silly, and generally competent human being at the time, so I was gobsmacked to hear these thoughts in my head. It’s amazing how powerful an affect a neurochemical imbalance can have on us. And I knew that suicide ideation was just a way that my brain was expressing my urgent desire to stop feeling the way I felt, to acknowledge that I was in over my head, and to get help.
But I was plugged in already, and I knew what the monster looked like, and I had access to ready and competent assistance. When you don’t recognize the monster, or even realize that the monster has taken up residence in your psyche, you may not realize that thinking of ending it all is a symptom, not a directive. Yes, do pay attention to these thoughts, but realize that the action you need to take is to tell someone who can help you feel better.
I was prompted to write this post because, just this week, a friend of mine was told by another friend of hers about a woman who was struggling through radiation treatment for her cancer, and killed herself. This is a shocking and tragic story, and one that should not and need not have happened.
Unfortunately, many of us are never informed about or evaluated for the symptoms of depression when we are diagnosed with cancer. And we should be. In his website article, Depression and Cancer, journalist, author, blogger and bipolar sufferer John McManamy reports that current studies have found that about “25 percent of cancer patients will experience major depression over the course of their illness. People with cancer are three times more likely than the general population to develop depression, and twice as likely as other hospitalized patients. The greater the pain, the more likely the depression.”
He writes further that,
The consequences of untreated depression can be severe.[...]Estimates of cancer patients who take their own lives range from twice the incidence of the general population to ten times.
Ironically, owing to the intensely horrific nature of cancer, not to mention its treatment, it is not uncommon to dismiss a patient’s depression or suicidal ideation as normal. “I’ll throw myself out the window if I have to go for chemo one more time,” sounds perfectly appropriate coming from a person who has been through far too much, already. As a result, many physicians do not look for depression, or assume that because depression is a normal reaction to cancer, it does not merit treatment.
It may be normal to be depressed when we have cancer, but we need not make ourselves live with it as a matter or course. The American Cancer Society has a thorough discussion of depression, and other emotional side effects of cancer and cancer treatment on its website, including how to help someone you know with cancer who may be depressed.
The signs of clinical depression, as described on the ACS site, are listed as these:
Symptoms of clinical depression
• Ongoing sad or “empty” mood for most of the day
• Loss of interest or pleasure in almost all activities most of the time; feelings of lethargy or apathy
• Major weight loss (when not dieting) or weight gain
• Being “slowed down” or restless and agitated almost every day, enough for others to notice
• Extreme tiredness (fatigue) or loss of energy
• Trouble sleeping with early waking, sleeping too much, or not being able to sleep
• Trouble focusing thoughts, remembering, or making decisions
• Feeling guilty, worthless, or helpless
• Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts
Keep in mind that some of these symptoms, such as weight changes, fatigue, or even forgetfulness can be caused by cancer treatment. But if 5 or more of these symptoms happen nearly every day for 2 weeks or more, or are severe enough to interfere with normal activities, encourage the person you are caring for to be checked for clinical depression by a qualified health or mental health professional. If your loved one tries to hurt himself or herself, or has a plan to do so, get help right away.
The National Cancer Institute also has a thorough section on depression and cancer on their site, which is presented in two versions — one for patients and one for healthcare professionals.
2. You are not alone.
One of the most common things you feel when you are depressed is that you are completely alone, isolated by your feelings, that no one could possibly comprehend how you feel because you scarcely comprehend it yourself. None of that is true. Honest. Although it may be cold comfort for some, it was a huge relief for me to realize that the neurotransmitters circulating in my brain and body, by simply being out of balance, could wreak this havoc, that I wasn’t irretrievably ‘flawed,’ and that therefore I could get better.
But far and away, one of the most helpful things I ever realized about depression was that I was not alone, unique, not weird, not some damaged, feckless idiot for having depression. There is nothing like talking with someone else who’s been there, done that, got the teeshirt, to help you find your way out of the wilderness that is depression.
3. Online and in-person peer support.
Following are some online support forums for people with cancer and depression:
Here are a few search tools to help you find local, in-person support groups and services for breast cancer and other cancers, as well as for depression and other mental illnesses; click on the appropriate links at each page to find listings for groups in your area:
NAMI – National Alliance on Mental Illness — State and Local Programs. There is also a link to their online forum on the left sidebar.
And finally, here is a post that tells a little more of the story of my family legacy of mental illness, and how I’ve coped: Sleeping With The Light On. You may also visit some of my previous posts by visiting the archive at The Vault. Or find the Search box on my right sidebar and look for a topic. I have written many posts about feelings, attitude, depression, fatigue, and grief, and you may find something among them that resonates.
After all, I’m still here, still stringing words together, still reasonably sane. And so are you.

Please click on the post title or the comment link below to post a response.
This entry was written by Kathi, posted on Friday, November 11, 2011 at 09:11 pm, filed under Breast Cancer Info & SupportHealth & HealthcareNitty Gritty and tagged , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

7 Responses to “Depression and Cancer: An Insider’s View”

  1. What a public service you have provided. You’re a treasure, KAK.
  2. Kathi, thank you for publishing this. I am currently taking Cymbalta for depression and also for pain from fibromyalgia. I would love to lose the fatigue and feeling hopeless. So much crap has gone on and I thank God I am alive but so unhappy a lot of the time. I know I need to go to a professional and glad I read your blog tonight. It is giving me more impetus to feel better.
  3. Beth, hang in there, and feel free to email me or send me a private message on FB. I’ve been through the war, believe me, so you can tell me anything. And I’m really and truly okay and NOT depressed these days.
    Thanks, rock, my love, as always.
  4. Kathi,
    This is a great from the “what am I doing wrong” to the on-line and peer-to-support – that also includes #BCSM tweetchats! Connecting with other women who walked the same walk is essential.
    Depression, left untreated, can be just as lethal as cancer. It robs a woman of light, energy and joy.
    Thanks to you and Lani for moving on this topic.
    Hugs,
    Jody
  5. Kathi, another wonderful post. When I was diagnosed with breast cancer, and got lymphedema, a “friend” castigated me for having “negative vibes”. I likely have chronic dysphoria–not major depressive disorder, but just chronic low grade stuff. And breast cancer sure didn’t improve my mood. Ironically, the therapist I’d seen and known for many years wasn’t helpful–he consulted at the hospital where I got my care and since I wasn’t happy with the care, there was a real conflict there.
    This is my month of many doctor appointments, and only my endocrinologist asked me about my mood, and had a great discussion about reactive depression.
    I take a low dose of celexa–ironically for vertigo–and too bad if I had negative vibes when I was diagnosed with breast cancer and rapidly developed lymphedema.
    Kathi, there’s so much stigma attached to mood disorders and mental health diagnosis and treatment, and thank you, thank you, thank you.
    Judy
  6. As a 2time breast cancer survivor, decades long depression fighter, and Licensed Psychotherapist I am intimately aware of the agony of depression. The pain is truly unimaginable, which is why ‘outsiders’ can be so unsympathetic.
    Thank you for this informative post!
  7. Thanks for comments, Jody, Judy & Jamie. I only wish I’d written more about it sooner. It’s utterly wretched. I’m only thankful that I didn’t have my first-ever bout with it after being diagnosed with cancer, too. It was horrid enough when I was young and physically healthy.
    People who’ve never experienced the overwhelming paralysis of depression cannot imagine how debilitating it is. Can’t imagine how much worse it is to be visited by it for the first time while you is dealing with cancer. Makes it doubly important that cancer care includes assessment and services for this. And good, solid differential diagnosis. One interesting thing I’ve learned in the past 3 years is how often fatigue is confused with depression. And ellicits some of the same misunderstanding and useless bromides, too. And they are NOT the same. Should write a follow-up post about that.
    xoxoxoxo