Collateral Damage

Dr. Susan Love published an interview on Medscape last week on the “collateral damage” of breast cancer treatments as reported by 3200 actual patients and not their doctors. She noted that doctors and patients often view things differently. For doctors, a living patient is the major sign of successful treatment. They don’t want to hear about treatment side effects that they can’t treat and cure, she says.

The patients and survivors are also happy to be alive but their quality of life may be severely impaired by chemo brain, depression, anxiety, fatigue, neuropathy, and hot flashes. She calls this collateral damage rather than side effects as often these symptoms are permanent, not temporary. She doesn’t mention breasts disfigured through lumpectomy and radiation, having no. breasts at all through mastectomy, or having a bad or failed reconstruction job. Presumably, these are just the regular damage to be anticipated from breast cancer treatment.

She reports that many survivors either weren’t told about these long term collateral damage effects or they were told at a time when they were so overwhelmed with other cancer information, that they were not able to absorb the message. Or if they did absorb the message, they were more concerned about staying alive than really thinking through how this collateral damage would impact their post-treatment lives.

The passages of her interview that really disturbed me the most were that chemo brain and neuropathy were forever. They don’t get better. You just get used to them and find your new normal. In other words, you stay numb and dumb forever. She could have added depression, anxiety, PTSD, and impaired body image to this list as they are often long lasting, sometimes forever.

I admit to being one of those who were told the “side effects” of chemotherapy (at least the second time around) and it was a blur of nightmare words and images ending with the ultimate side effect of death. Everything else was forgotten the moment it left the oncologist’s mouth. Thank God I took notes.

But nothing in my notes said that chemo brain and neuropathy were forever. Or that I would eventually wind up with PTSD and free falling panic attacks. Chemo brain was supposed to end with chemo. Neuropathy was supposed to eventually go away.

And no one told me just how bad a reconstruction job could be. So bad, that even oncologists and their nurses urged me to find a new plastic surgeon and get it fixed. I eventually did but after about 7 years, the implant inside the flap became encapsulated with scar tissue and is now a hard ball that juts off to the left of my body. My newest plastic surgeon is afraid to operate again for fear the whole reconstruction will collapse. So I walk around with a badly reconstructed left side and a right side that should have had the permanent implant put in it 3 years ago, dragging my feet about signing up for more surgery that will result in 2 mismatched breasts or even worse, 2 matching deformed breasts.

I had a male colleague at work whose wife had breast cancer shortly after I had my reconstruction revised. I even referred them to the plastic surgeon who performed the same back flap surgery with silicone implant that I had. I remember sitting in his office 2 years
after her surgery and listening to him complain how he could no longer make love to his wife as the surgery had left her “a hideous grotesque monster”. He was generally a very kind man and I think for a moment he forgot that I too had the same surgery. My smile froze on my face and I quietly left the room, stung to the core. It quickly put me in my place that no matter how much better the fake breast looked than before the revision, in some men’s eyes,
I would always look like a hideous grotesque monster. Yes, body image issues are forever after breast cancer.

I should note that he left his wife shortly after this conversation and is now remarried to a normal 2 breasted woman. From the Facebook groups I belong to, it seems many marriages end after a breast cancer diagnosis. So do many friendships. More collateral damage to add to the list?

I had dealt with chemo brain before way back in 1994 when it was a slang term that patients used but wasn’t really acknowledged by doctors as a true medical condition. I had short term memory loss and word problems way back then but I seemed to be back to normal 18 months post-chemo.

Ten years later, I woke up one morning with 2 fingers in my left hand permanently numb although I didn’t know it was permanent at the time. The neurologist couldn’t find anything with his shock tests so I was sent for a brain MRI.

All hell broke loose then when it showed that my brain seemed shrunken (now a recognized piece of collateral damage from chemotherapy) and was covered in white spots consistent with multiple sclerosis but in the wrong parts of the brain. I still spent 3 years at the ms clinic waiting for more symptoms or for my MRI to change. Finally, I was told it wasn’t ms and then spent the next 2 years seeing every medical expert in town for a cause for my numb fingers and unusual brain MRIs.

Someone suggested it could be a late arising radiation symptom. No one ever suggested it was from chemotherapy. I still don’t have a definitive answer but I truly believe the numbness and the weird brain MRIs are collateral damage from my first 2 cancer treatments, involving both radiation and chemotherapy. Given that the condition has remained permanent for the last 10 years, I suspect my neuropathy is forever. And no, I’ve never gotten used to it or found my “new normal” in dealing with it. It makes me angry and frustrated that these symptoms showed up years after active cancer treatment. What other long-term “gifts” does cancer have in store for me down the road?

I had chemotherapy again in 2011. Suddenly chemo brain was a real condition that oncologists talked about seriously. I don’t recall being told that it could be a permanent condition. For me, the chemo brain has in fact improved significantly but it still rears its ugly head in times of stress or fatigue (and sometimes for no discernable reason at all). It seems to have stabalized about a year ago and I always assumed it would keep getting better as time went by.

But now reading that chemo brain can be forever, I am left wondering if this is as good as it gets. Will I always be plagued with a brain and tongue that don’t connect or a brain that has much poorer short term
memory than it did before the second chemo? Some women have written in the comments to this blog that they suffer from radiation brain with the same symptoms as chemo brain. God help me if this is true, as I have been radiated twice along with my 2 bouts of chemotherapy. My brain must be the size of a peanut by now, covered with even more white spots and less grey matter.

It is clear that research money has to go into ways of dealing with the collateral damage breast cancer treatments leave behind as well as trying to prevent the damage from happening in the first place. We don’t need more awareness of breast cancer. Everyone is aware. We don’t need to use race money to fund more races. We need to find ways to help with these survivorship issues. And even more importantly, we need research money for a cure for metastic breast cancer, the only breast cancer that actually kills.

Sharon Greene March 10, 2015

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Cancer Changes Everything

I saw a meme the other day that said something like “cancer can take away my body parts but it can’t touch my mind, my heart, or my soul.” Lovely words, heroic even, if you don’t think about them too closely.  I thought about them very closely and found I disagreed strongly with the message.
One way to interpret this meme is the superficial positive message of, “I am more than my disease. I am still a real person under the scars and the bald head and the chemo sickness. I am still me in my mind, heart, and soul”.

On that level, I can accept the meme’s message. But when I look at the words as they are written, not searching for a positive hidden meaning, I find myself in total disagreement with them.

I don’t think we can compartmentalize our lives that easily. The physical changes impact the mind, the emotions, and the spirit. It is not just the physical changes that lead to mental and emotional distress. The very process of being diagnosed with a life-threatening disease plays havoc with our minds, emotions, and our spirits. We are more than the sum of our physical parts. Our bodies, minds, emotions, and spirits are all intertwined to make up the whole package of our being.  Our bodies don’t exist in some separate dimension away from the mental and emotional parts of our being.  I do not believe that we come out of the other side of a cancer experience the same person we were when we went in.

Dealing first with the physical changes that cancer brings upon us, they have an enormous impact on the mind, the heart (emotions), and the soul (the very core of our being and our belief system). Breast cancer treatment often strips us of our breast(s), our hair, our fertility, and sometimes our ovaries or even our whole reproductive system. Often times treatment pushes a woman into at least temporary menopause. For others, the menopause is early and is permanent. No matter what kind of treatment is involved, there is physical pain and sickness from surgery, chemotherapy, and radiation.

Our whole body image can change dramatically in only a few months time. Suddenly, all the physical attributes of what makes us female are gone. This plays havoc on our self-esteem and self-confidence. Yes breasts can be reconstructed, hair will grow back, fertility may be regained if we are very young and lucky or if we had the foresight to freeze eggs or embryos in advance of chemotherapy or gynecological surgery.

But breast reconstruction often involves multiple surgeries and for some, the end result is disappointing at best. And a reconstructed breast no longer has any feeling in it, no matter how cosmetically wonderful it may look.

Assisted reproduction techniques are not always successful. Chemotherapy can leave behind a permanent legacy of neuropathy (numbness in the hands and feet), hormonal drugs can lead to chronic joint pains, and surgical or chemically induced menopause symptoms can be more severe than natural menopause and are unlikely to be treated with hormonal supplements as these may reignite cancer.

With all these physical “side-effects” of cancer treatment, is it any wonder that many women feel distressed or depressed or highly anxious? When you look in the mirror and don’t even recognize the person you were 6 months earlier, it is bound to affect you mentally and emotionally. If you are in chronic pain and are suffering hot flashes at 30, it tends to change your outlook on life.

As far as cancer not being able to touch your mind,  I have one word for that. Chemobrain. It is real, it affects your memory, your concentration, and your ability to communicate effectively. It can feel as though you have had a mini-stroke as you dig through the filing cabinets of your mind to find that elusive everyday word you have used a million times before. Other times the right word is in your brain but a totally random word comes out of your mouth as if your brain and mouth were no longer connected. Then there is the disconcerting habit of losing things – your purse, your keys, your phone – only to find them right in front of you the whole time. So yes, cancer treatment can take away the mind for many of us, at least temporarily.

As far as the heart or the emotions, just the very diagnosis of having a disease that can potentially kill you tends to strike fear and panic into your heart. You wait endlessly for pathology reports and the results of various scans to see if the cancer has spread. You worry about loved ones and how they will cope during treatment, or in the worst case scenario death, particularly if they are young children or aged parents that you normally care for.

Even when the cancer is caught at an early stage and the prognosis is good, most women are still highly anxious about a recurrence or a future diagnosis showing the cancer has spread. Once you have had cancer, you feel your body has betrayed you once and can do so again. Your sense of safety in the world has been irrevocably affected.  You have come face to face with your own mortality, realizing you just might not live to a ripe old age. These factors can bring on depression, anxiety, panic attacks, and in some cases, PTSD. So yes, cancer can and usually does attack the heart (emotions) as well as the body.

Finally, your soul or your very essence of being can be adversely affected as your perspective on life changes. Some of the changes may be for the good in that you start to appreciate the people and things around you more as you feel you came close to losing them. But it can also make you more wary of planning for the future, knowing that cancer could re-enter your life at any time.

You suddenly become aware that many women are dying of this disease, women your age and younger, as well as women whose cancers were also detected early and were given an excellent prognosis.  The world of cancer seems very random, more like a roll of the dice than like the orderly world of the cancer media which says early detection will keep you safe. You may search for ways to put yourself in control of your cancer by completely changing your diet and lifestyle only to hear about organic vegans who ran triathlons and died of cancer anyway. When you realize that the difference between living and dying of this disease seems to be more a matter of luck than anything else, your previously optimistic view of an orderly controlled world is essentially gone for good.

Perhaps I am presenting an overly pessimistic view due to my personal history of having breast cancer 4 times. It is a rarity in the breast cancer world to have cancer strike 4 times and not spread beyond the breast. I am grateful that I have been spared from Stage 4 cancer multiple times, particularly as I also have a BRCA1 mutation to contend with.

But even “good” recurrences like mine come with a huge emotional and spiritual price tag attached. I am constantly looking over my shoulder waiting for cancer to strike again. It is impossible for me to believe that this time I have “beaten” cancer as it keeps coming back for another round. Even if my breast cancer days are over, the BRCA1 mutation means I am susceptible to other forms of cancer that may be waiting in the wings to strike when I least expect it.

I don’t blame cancer for all the problems in my life. But I would be lying if I said that cancer didn’t have a negative impact on all areas of my life. I don’t believe cancer only took physical body parts away from me. It took much more of a toll on my emotions and spirit that I tried my best to cover up for many years. I am still happy with my life but I miss the wide eyed optimist I used to be. I don’t think she is ever coming back again and that makes my mind, heart, and spirit sad.

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Finding My New Normal After Losing My Old Normal

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I was first diagnosed with breast cancer at 29. February,2015 will be 27 years from the time of my first diagnosis. I have spent almost half my life battling breast cancer.

“Finding your new normal” is one of those popular buzz phrases spoken by oncologists, counsellors, and other cancer survivors. I’ve always felt that this word was like a password to a secret clubhouse that everyone in Cancerland belongs to except for me. Although I know this password, I am obviously missing something that would allow me to gain entry. Maybe a special knock or a secret handshake is also required. While I can spout the phrase “new normal” without difficulty, I’ve never quite understood how those words applied to my life.

If we uttered the phrase “changes to your life” due to cancer, I could easily relate to that. I could draw up a long list of the ways my life changed with the first diagnosis,the first and second mastectomy,the bad reconstruction job,the repeated bouts of cancer,and the discovery that I lived for 16 years under the illusion I was BRCA negative when in fact I was BRCA1 positive all the time.

Maybe I have problems relating to the word “normal”. The changes that happened to my mind, body, and emotions were anything but “normal” as we usually think of the term. Losing my breasts, lymph nodes,fertility,and ovaries may be normal for BRCA positive cancer survivors and previvors but there is nothing normal about that in terms of the population at large. Being diagnosed with 3 separate breast cancers at 29, 34,and 36 is statistically improbable in the breast cancer world. Having a fourth breast cancer at 52 puts me into a rare category that very few breast cancer patients attain (or would want to attain). Top that off with all 4 cancers being of the triple negative variety (not influenced by hormones) which is a reasonably rare breast cancer, and there is very little that is normal about my world.

If we are talking about acknowledging that these things happened to me and that they form part of my present reality, I can do that. Have I fully accepted, embraced, and integrated these changes into my life in a positive and life-affirming manner? Uh no. Although I can be happy and positive much of the time, I am not happy that I had to go through these events at such a young age. I’m also not happy that I had to have my cancer come back over and over and over again. This is my life, this is my reality, this is my world but there is nothing normal about it. And there is little I can do to normalize my experiences so that they make some sort of sense in the context of the rest of my life.

I try to think back to what my old normal was. I was an only child who spent the first 12 years of her childhood growing up in a typical suburban neighborhood. My parents and I attended Baptist church every Sunday and my parents were complete tee-totalers. This “normal” existence underwent a dramatic change in 8th grade when my father went from complete tee-totaler to a full blown raging alcoholic and valium addict in the course of one year. My world was completely turned upside down and I had no idea how to deal with this “new normal”. My father’s alcoholism progressed with great speed and his moods veered between sickeningly sentimental and raging mad, with very little in between. My lifelong battle with anxiety and depression started in the 8th grade and progressively got worse throughout high school.

My mother felt the best way to protect me was to get me out of the house as soon as I graduated high school. We lived in a university town so we planned to find a major that wasn’t offered locally. We hit on Criminology as it was only available 1000 miles a way. Not the best way to plan for your future education, but it achieved its purpose and I was able to leave home at 17.

The next 12 years were the college and early employment years. I attained my BA in Criminology, gained some work experience as a probation officer, went back to university to complete law school and spent a grueling year articling (similar to interning) with a large law firm in Vancouver. I had dated widely, fallen madly in love at least twice, broken a few hearts and had mine broken in return. I never doubted that I would have a law career or that I would marry and raise a family. Those were the fun years filled with plans, hopes, and dreams about the future. After the chaos of growing up in an alcoholic home, I loved my fun filled yet hard working “new normal”.

On the eve of my entry into the legal profession, I had my first cancer diagnosis. It changed me in ways that still affect me today. The career was put on hold. The doctors said no pregnancies for 5 years or else I would die, so marriage and a family were put on hold as well. Although I only had a lumpectomy and radiation, I developed major body image issues as I knew no one even remotely in my age group who had a weird looking mismatched breast. I became shy about dating, not knowing when to break it to them that I had undergone breast cancer treatment. So dating was also put on hold. Fear,anxiety,and social unease became my constant companions after that first diagnosis and continue to haunt me today. Is this considered my first experience with cancer’s “new normal”?

I still believed that being cancer free for 5 years meant you were cured. Over that first 5 year period, I did launch my law career and began dating again. I was offered a promotion and a move to a new city hours before I went for my 5 year mammogram. I told my employer that I would be back shortly, that this mammogram was just a formality, as all prior mammograms had been clear. Unfortunately for me, this mammogram showed cancer again and a mastectomy and 9 months of chemotherapy were my only options. Good-bye promotion. Good-bye new city. And the 5 year no pregnancy rule started from scratch all over again.

I was off work for 18 months. I had lost my last illusion about being cured of cancer. Where the first cancer had brought fear and self-doubt into my life, the second cancer brought a kind of craziness. The world which I always believed was a fair and orderly place, became chaotic and events seemed completely random. Whether I lived or died seemed completely out of my control. Any plans I tried to make for my future seemed to be quashed as soon as they were made. It was clear that there were many things my oncologists did not know, many questions they could not answer. I felt a lot of confusion. It seemed that whenever fate was about to give me a big break, cancer re-entered the picture to turn my dreams to dust. Was this feeling of hopelessness and helplessness my “new normal” for my second cancer?

I had reconstruction surgery which looked bad even from the start. Even doctors and nurses at the Cancer Clinic would comment that I should see another plastic surgeon to try to fix it. My breast resembled a lumpy flattened pancake but as it had taken a long time to heal, I wasn’t eager to go under the knife again. My body image issues and self-consciousness grew considerably worse.

18 months after returning to work, a new cancer was found in the remaining breast. I had a new surgeon who said doctors had recently abandoned the 5 year pregnancy rule and that if I wanted a child, I should hurry up as I was already 36 and could have early ovarian failure due to the chemotherapy. I got married and we soon found ourselves at a fertility clinic. 2 rounds of IVF were unsuccessful so we formulated a Plan B. We started the adoption process and a year later, we had a handsome baby boy. 16 months after that, we were blessed with a beautiful baby girl.

I took one of the early BRCA tests and was declared BRCA negative. Life was good. Until one day it wasn’t. The marriage imploded, I was blindsided,and I was left as a single Mom to a 22 month old toddler and a six month old baby. Once again, my hopes and dreams were shattered and life seemed as random and arbitrary as it had during my second cancer.

The years went by, the kids kept growing, and the cancer stayed away. After 16 cancer free years, the cancer came back. I was looking at another mastectomy and more chemotherapy. Only this time around, there were children involved, ages 9 and 11. This time I really was afraid of dying as I didn’t want them to lose their mother at such young ages. The kids were scared too but wouldn’t really say so. My son wanted me to appear as normal as possible and not look like a cancer patient. He wanted me in a wig and full make-up 24/7 (didn’t happen). My daughter would feel sick with vague symptoms on chemo days or oncology visits. She wanted to accompany me to all these appointments as that seemed to make her feel more secure. It was another crazy hysterical chaotic year but we muddled through it somehow.

After cancer 4, I was encouraged to retake the BRCA test as it was now looking at things it hadn’t looked for originally. Suddenly, I was BRCA1 positive and at high risk for ovarian cancer. There was a great rush to have my ovaries and fallopian tubes removed as soon as possible.

With Cancer 4, I became a bit of a medical curiosity given that I was BRCA1 positive, had an aggressive grade of an aggressive cancer, and had survived for so long without the cancer metastasizing outside my breasts. At work,things were looked at somewhat differently. Between the cancers and the 2 adoption leaves, my coworkers saw me as someone who was rarely at work. The office atmosphere was decidedly chilly upon my return from Cancer 4. My self-esteem was plummeting, I still had side effects from chemo brain, and I started feeling incompetent in a job I had held for 25 years. A year ago, I took a medical leave and have since been diagnosed with post-traumatic stress disorder.

My “newest new normal” now has a mixed diagnosis of PTSD, depression, and anxiety. I no longer plan too far ahead for fear of jinxing any happy days that lay ahead. I worry about my children’s future – who will love them and look after them if I am gone? At the same time, I am forever grateful that I get to be their Mom. I try to live each day as if it may be my last.

Is this the “new normal” everyone talks about? Is it some combination of hard lessons learned and the feeling of walking on a trapeeze with no safety net underneath? The feeling that my luck will once again run out and I will be forced to take another spin on the Cancer Roulette Wheel of Fortune? Is it all those scary feelings combined with a fierce protective love for my children that keeps me going forward each day?

What does the “new normal” of cancer feel like to you? Have I completely missed the boat on this one? Is it supposed to be a positive thing or a negative thing? I really would like to hear your thoughts in the comments below.

Sharon Greene January 15, 2015

Parenting With Breast Cancer

When you are a parent, you want to protect your children from all the bad things in life as you love them so fiercely. You feel like this lioness with her cub, trying to shelter them from all impending harm. But when you are diagnosed with cancer, you are the one that sends your children’s world into a chaotic tailspin. Between the shock of diagnosis, the demands of treatment, and the uncertainty of what the future holds for you and your family, your children can’t help but be threatened by this disease that has invaded their lives.

Although I have had breast cancer 4 times, I only had children during the last bout in 2011. At that time, they were 9 and 11, old enough to understand what was going on but young enough that they still needed a parent who could be there for them 24/7. As a single mother with no other family for support, I found the competing demands of parenthood vs the painful realities of illness very overwhelming.

My children knew since a very young age that I had cancer 3 times way back before they were born. They were perversely proud of this fact about me as I guess it made them think I was Wonder Woman, able to beat cancer into submission at a single bound.

When after being cancer free for 16 years I learned it was back, I panicked about how I would explain this to my son and daughter. I had no idea how we would manage as in the past there was always someone around to take care of me. This time I was their caretaker and no one was volunteering to look after me (or them).

The children knew something was wrong before I was ready to have the cancer discussion. There were too many doctor’s appointments, too many whispered phone calls, and a few too many tears shed watching children’s television shows that weren’t particularly sad or sentimental. When your Mom bursts into tears over Sponge Bob’s latest escapade, the children fear the worst is about to happen. When they asked if they had done something to make Mommy so sad all the time, I knew I had to tell them the truth.
 
 

 

 
I did a little research on how to talk to your school age children about a cancer diagnosis. The articles mainly touch on three points which have been called the 3 “c” words. The first point is to call it cancer, not a generic sickness or a boo boo. The reasoning is that if they have a name and explanation of what your condition is, they will be less likely to worry about other more horrendous illnesses (maybe Ebola?) you may have. It helps as well for them to associate a specific term for the disease as they may become overly fearful of the word, “sick” as it applies to them. If they associate the word “sick” with Mommy having major surgery and going bald they may panic when someone calls them sick when they complain of a tummy ache or a sore throat. They may think their sickness may lead to the same extreme consequences that happened to Mommy. So instead of turning your children into hypochondriacs by using the word “sickness”, use the word “cancer” so they can differentiate between the two conditions.

This was the easy part for me. My children knew what cancer was because of my past history. On the other hand, they had never lived through it before and needed some explanations of the possible treatments that might be involved and the consequences of those.

My 11 year old son became fixated on the fact that I would lose my hair and that seemingly was his greatest concern throughout my treatment. Talking to him about my cancer now 4 years later, he admits he was secretly worried sick I would die and leave him. But it was safer for him to worry outwardly about my baldness, wanting me to wear a wig, even to sleep. My little caps and turbans were disturbing to him (let alone my bald head) even in the privacy of our own home.

My 9 year old daughter took my baldness and various head coverings in stride. She loved coming with me to the Cancer Clinic where free donated wigs and head coverings were there to try on and take home. She became my fashion co-ordinator, ensuring my hat matched my outfit.

She showed her discomfort about my cancer in other ways. For example, she would often feign sickness on my chemo days or at times I had oncology appointments. She knew I considered her too young to leave at home alone so she would often accompany me to these appointments. This was her way of exerting control of the situation. She seemed to think that if I went to a hospital alone, they would keep me and I would never return home.

Even though I strongly suspected her vague symptoms of illness were fake, it was clear that her distress levels were real. Taking her along to these appointments reduced her anxiety while insisting she attend school led to huge emotional meltdowns every time. It seemed the lesser of the two evils at the time although in hindsight, it would have been better for her education if I had a back-up person to send her to on those appointment days. My guess is that she would have recovered from her symptoms quickly and attended school to be with her friends. While neither child ever actively worried aloud in my presence that they were afraid I was going to die, 4 years later it is clear that was underlying their behaviour all along.

The second “c” word recommended to be included in any discussion of cancer with children is the word “contagious”. It is important that children know they will not catch cancer from you in the same way they could catch a cold. This encourages continued close contact like hugs and kisses, without the child worrying they too will become sick. My children seemed to readily understand this concept and were not afraid of physical contact with me.

The only times physical contact became a challenge were after the mastectomy and partial reconstruction, when I returned home sore with 3 drains hanging down. They had to be reminded that Mommy loved them but couldn’t tolerate a big bear hug quite yet. The other times physical contact became an issue were during chemo when they had a cold or flu and they were the contagious ones. They had to be reminded that my immune system was weak and if I caught their bug, I could get very sick. They seemed to accept that without question. I was the one who suffered guilt from not being able to care for them as a mother should when some bug got them down.

The third “c” word is “causation” in that Mommy’s cancer was not caused by anything her children did. The experts say that children under 13 are still in a developmental stage where they may blame themselves when something bad happens in the family. They may think that Mommy got cancer because I always nag her for new toys or because I don’t clean my room when she tells me to. I did reassure my children that they did not cause my cancer in any way. They both looked at me blankly as if the thought had never crossed their minds. That may be explainable by their knowledge that I had breast cancer 3 times before they were born. If they didn’t cause the first 3, why on earth would they think they caused the fourth cancer?

To help my children better understand my illness and their feelings about it, I brought home every age appropriate, “when your parent has cancer” book the Cancer Clinic had available. Although both enjoy reading, neither child showed any interest in the books even when I said we could look at them together. Maybe they thought we have to live with this stuff everyday, why would we want to read about it too?

Some cancer centers have programs specifically for children with parents living with cancer. We attended a half day program which the kids enjoyed very much as they saw others their own age living with a parent like myself. My daughter and I attended a Look Good, Feel Good program where we got to play around with and take home various cosmetics and wigs. My daughter decided I needed a purple wig to liven up my appearance so I would sometimes wear it at home for fun. This drove my son crazy as while he wanted me in a wig at all times, I was only supposed to wear wigs that were of the same color and style as my natural hair.

Trying to be a parent with cancer is challenging at best, although some of the sweetest memories of my life come from that period. Sometimes a simple caring gesture or word from one of my children would be enough to lift my mood for days on end. We did still manage to have birthday parties and a few fun outings during this year. Even at my sickest, when I was hospitalized for 4 days a week after my first chemo, the children got to spend one night with me in a private hospital room, a fun first for both of them.

Unfortunately, between the chemo brain and the PTSD, much of the year of Cancer 4 is a hazy blur to me. My children remember it better than I do. If I had to relive that experience again, I would seek out more support for both myself and the children. I also would have looked into one of the free camps for cancer families as we all needed a vacation after the previous year. They are just starting up in Canada but there are several established places in the US we might have qualified for had I known about them at the time.

While parenting with cancer can be tough going at times, especially for a single parent, it is doable as long as you can let go of your expectations of what perfect family life is supposed to look like. Sometimes a picnic on the floor altogether as a family can be more fun and memorable than a standard dinner at 5:00 gathered around the kitchen table. It’s your cancer, your family, and your lives together that determine how you best muddle through this difficult family time.

Sharon Greene January 3, 2015

Making Themes Not Resolutions For 2015

                                                                    

Having made and promptly broken every resolution made for New Years in the  past, I’m trying something different this year. I have decided to pick 2 keywords as my themes for the year which will hopefully guide my actions in the 12 months ahead.

The words I have chosen for 2015 are “create” and “giving”.  I want to build up and not tear down. I would like to make something new, whether it is a new blog post, an article written out of my comfort zone, an e-book, or building a sense of community in my online and virtual worlds. I want to share my experiences more transparently and honestly in the hopes that even one reader will say to herself, “hey, I’m not alone feeling this way”. As I wrote in an earlier post, The Winning Ticket, I want to give back to my community, not keep taking from it. In terms of this blog, I want to create a safe place where we can exchange our stories freely, offer much needed emotional support to each other, and not worry if our stories do not resemble the”official” one of happy smiling pink-suited survivors.

As far as giving back or paying it forward, I would like to be even more candid about sharing my experiences with having triple negative breast cancer 4 Times. While I am not a doctor and can’t offer medical advice, I have almost 27 years of personal experience with this disease. I have gained a certain amount of knowledge about breast cancer and recurrences/new primaries as well as living with a BRCA1 positive gene during this time.

There was a recent post called Breast Cancer: It Is Going To Be A Bumpy Ride where I danced around the topic of whether or not I personally suffered from PTSD.  Some readers figured it out while others didn’t. Yes, I have had depression, anxiety, panic attacks and flashbacks for years but was not properly diagnosed with PTSD until 6 weeks ago. Since then, a new medication has been added to my antidepressant and anti-anxiety cocktail and I am feeling lighter than I have in years. So why did I not just come out and say that in the post? Was I so afraid of labels about my mental health that I felt a need to detach myself from this particular diagnosis?  If nothing else, I would like to turn my negative experiences into something positive that others can relate to and realize they are not alone. I have had the symptoms for PTSD for many years and now with the official diagnosis, it is finally being appropriately treated. I feel better! And that is nothing to be embarrassed or ashamed of for any cancer survivor.

I hope my themes work better than my resolutions ever did. What about you?  Are you making New Year’s resolutions or goals or themes? Why or why not? If you are comfortable doing so, please share these or any other concerns in the comments.

Have a Happy healthy joyous 2015!

                                                                                                                                                                                                            Together we can accomplish anything!
                                                           
   

            

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Sharon Greene December 31, 2014

Breast Cancer: It Is Going To Be A Bumpy Ride

A breast cancer diagnosis is a life altering event, physically, spiritually, and emotionally. Surprisingly, little attention has been devoted to conducting scientific studies that measure anxiety, depression, and PTSD rates in first time breast cancer patients. Even less scientific attention has been paid to these psychological effects in patients who have experienced a recurrence or a metastasis of their cancer. The statistics available are all over the map but it can safely be said that almost all breast cancer patients will suffer from depression and high anxiety levels sometime on their journey from diagnosis to post-treatment.  

These feelings may be short-term for many, disappearing within a few months after treatment ends. A significant percentage of first time breast cancer survivors (US studies say 25% while European and Australian studies say at least 50%) will go on to develop long term post-traumatic stress disorder. There is very little statistical evidence pinpointing the rates of depression and PTSD in women with breast cancer recurrences but an 80% combined severe depression and/or PTSD rate has been cited in some articles. For the stage 4 patient, it is frequently noted that the depression and PTSD rates are “very high,” which really isn’t all that surprising. While the scientific studies are few and far between, it is stated repeatedly in the cancer literature that most of us will have to deal with these negative emotions some time along our journey.

Drs. have long recognized that a cancer diagnosis is a huge emotional blow to their patients. Just the very word “cancer” strikes the fear of disfigurement, a shortened life span, and a slow painful death into the hearts of most of us. Anti-anxiety medications such as Ativan or Xanax are often prescribed to the newly diagnosed and prescriptions are freely refilled during treatment and for a short time thereafter.

The cancer diagnosis may be given in person or over the phone, depending on your doctor.  If it’s over the phone and you have paper and pen ready, you may have some recollection of the finer points of the doctor’s call when you hang up. Or maybe not. My first diagnosis was over the phone and while I wrote notes as a rush of medical jargon came my way, all that was written on my page was “breast cancer” about eleven times, in increasingly larger letters. I didn’t even manage to write down my next appointment and had to call his office back to find out what I was supposed to do next. My mind felt like a sieve in the early days of my first diagnosis as I could not seem to retain anything but the most basic information. At other times, I felt like I was having a weird out of body experience, somehow removed from all that was happening around me.  I guess the shock of having your whole world turned upside down in a moment creates chaos in your brain.

I strongly recommend taking a tape recorder and/or another person with you to the surgeon’s and oncologist’s office for your visits. The amount of information given is too much to absorb on your own, let alone process and act upon. Some doctors will explain things in plain English while others may use medical terms in a way you don’t understand. Even a diagnosis such as “triple negative breast cancer” will leave you staring blankly if you have never heard the words “triple” and “negative” applied to breast cancer before. It feels as though you have to learn another language just to understand what is going on in your body. The worst part is that before you have even mastered the fundamentals of this new language, doctors are asking you to make many impossible decisions and to make them quickly.

The diagnostic period and the  treatment planning time are among the most confusing and stressful parts of the cancer process. Not only are you reeling from the shock of learning you have cancer, you are given a huge amount of unpleasant choices to make, any of which have the potential to change the whole course of your life.

Do you want a lumpectomy with radiation, a single mastectomy, or a double mastectomy? Chemotherapy before or after surgery or no chemotherapy at all? If you choose chemotherapy, here are the risks and benefits of each type we could offer you. One can cause long term heart problems and the other increases your risk of uterine and bladder cancer. Which would you prefer?  Do you want immediate reconstruction or do you want skip that and use prostheses or would you rather be fabulously flat? If you choose reconstruction, do you want implants or surgery that uses your stomach, back muscles, or buttocks to create a new breast? Is genetic testing necessary?  If you test positive for a genetic cancer,  do you want your ovaries removed now or later?    

All these decisions and more have to be made in a short period of time while you are still reeling from emotional shock, not fully absorbing all the information being thrown your way. It’s a wonder any of us stick around the doctor’s office long enough to make any decision, informed or otherwise!
 

The initial diagnostic period also involves further scans and tests to determine if you are one of the 10% of first time patients whose cancer has already spread from the breast to another part of the body. The testing portion of this period can bring on intense feelings of fear, worry, and depression as you have no idea whether the cancer has already travelled past the breast and into your bones, lungs, liver, or brain.    

The whole pre-treatment process takes on an air of unreality as only a short time ago you were blissfully unaware that you were even sick.  Is that really you rejoicing over clear scans and hearing yourself agreeing to amputation of part or all of your breast(s) followed by chemotherapy and/or radiation? I swear cancer never felt real to me until the first moment I would wake up in the recovery room after surgery, moaning for a shot of morphine.  With surgical pain, cancer got real very quickly (and yes I felt this way all 4 times).

Each patient has their own way of coping with the physical realities of surgery and other treatment.  Some women move quickly from shock into fighting mode, telling themselves and their loved ones they will beat cancer and kick it’s butt into the ground. Some women place their faith in God to get them through the hard times. Others adopt a strategy of trying to always find the positive or the humorous side of cancer. Others just get plain angry at the Universe, fate, or God.

All these coping strategies can be helpful during treatment as they may provide the motivation to continue with chemo or radiation even when your body is weary and just wants the treatment to be over with NOW.

Some people can stay in one particular emotional mode throughout the treatment process. Most of us flit in and out of various modes, one day feeling like a tough warrior and the next feeling like a fragile bird with a broken wing.

There are those who struggle with debilitating depression and anxiety throughout the treatment process. They may have to force themselves to continue treatment when the going gets rough. They may question if they are putting themselves through the pain of chemotherapy or radiation for a cancer that may recur or metastisize anyway, regardless of what they do.  They may feel overwhelmed, sad, and stressed most of the time.   

If you are feeling severely depressed, it may be that you are lacking a strong support system. If you can reach out to family, friends, a church or a counsellor for help, it may make life easier to deal with. If the depression is persistent and is interfering with your life, please consider psychiatric intervention and possibly a prescription for antidepressants.

The treatment period can heighten feelings of  depression through a combination of physical and emotional factors.  One of the key features of all the treatment methods is that they bring on severe fatigue which can quickly lead to emotional exhaustion. Getting out of bed, showering, and eating breakfast can feel as exhausting as a full day of physical labour. Throw a couple of children and pets into the mix and you are drained of all energy by 9:00 am. 

There are also the emotional stresses of dealing with a radically changed body from surgery and hair loss from chemotherapy. This plays havoc with your self-image and self-esteem as you wonder where the woman you used to look like a few months ago has gone. With your bald head, lack of eyelashes and eyebrows and whatever surgery was done to your body, you may feel she has no hope of ever coming back. The physical changes are difficult at any age but seem to be harder for young single breast cancer patients to handle. The literature notes that the young, the single, and the poor have the highest rates of depression and PTSD following a breast cancer diagnosis.

Depending on where you live, there may be financial pressures if you don’t have adequate health insurance or if you have to quit your job as paid sick leave is not offered.  If you are a single parent with little support, every day can feel like one long endless challenge.

Coping with cancer treatments and chemobrain simultaneously can leave you feeling helpless as your short term memory fades and you find yourself literally at a loss for words as the connection between the thoughts in your head and what comes out of your mouth seems to be irreparably broken. I remember bursting into tears several times trying unsuccessfully to express a simple sentence. At times I thought the cancer had spread to my brain as I was constantly forgetting where I had left my keys, purse, or phone and I often didn’t have the words to express to others what the problem was. Even though my doctors said it was chemo brain that was responsible for my memory and language problems, at times I thought I was losing my mind. Or that at the very least, I had suffered a stroke or was experiencing early onset Alzheimer’s symptoms.

A very vulnerable time for breast cancer survivors is when treatment ends and they stop being patients who see their medical team on a regular basis. Some of the women who spent their time in treatment being fighters or being angry or being positive come crashing down the hardest when treatment ends. I have heard women describing themselves as feeling lost and not knowing what to do next once that last chemotherapy or radiology session they were so looking forward to has come to an end. After all these months of anticipating the end of treatment, the actual ending seems anti-climatic yet frightening at the same time.

For many women, the end of treatment is when depression truly hits them. Their pre-cancer life is gone forever as they have faced their own mortality head on. There is no turning back the clock and regaining the innocence they have lost. At the same time, their identity as a cancer patient has come to an abrupt end and they must face their inner fears of a recurrence or a Stage 4 diagnosis alone, without the support of their medical team.

This transition time is very hard for many women. They reached their goal to finish treatment but they don’t have a new tangible goal to strive towards. Others around them impatiently wonder when they are going to resume their old activities and lifestyle. Their family and friends may begin to withdraw the emotional and physical support they offered during treatment as they expect the woman to bounce back to normal in a week or two, or maybe a month tops. The survivor may feel misunderstood by everyone, including herself. She may wonder how she could stay so positive through treatment and then be hit hard with depression when the treatment ends.

Cancer treatment is a physically and emotionally draining experience and it is unrealistic to think that everything will be back to normal as soon as the last treatment session ends. It takes a long time for your body and mind to recover from the trauma of surgery, radiation, and chemotherapy.  As doctors tell their patients to find their new normal, it may be impossible to return to the days of the old normal. Priorities may have changed significantly in the year or so that has passed since they were first diagnosed with cancer. Returning to the old normal may not be an appealing option anymore.

The emotional trauma experienced after a cancer recurrence or a Stage 4 diagnosis takes even longer to process than a first time diagnosis.  When cancer spreads or comes back, you can no longer tell yourself that if I make it 5 years, I will be cured. It becomes clear that cancer doesn’t play by the rules, at least not for everyone. 

When the 5 year magic cure rule is broken, many illusions that gave hope the first time are shattered forever. You no longer believe that medical science has all the answers, especially if your cancer was caught early and your prognosis was excellent. You become aware that cancer can come back again at any time or can continue to spread throughout your body even when it has been aggressively treated. You will never feel safe that this time it is gone for good, no matter how much you change your diet or make other changes to your lifestyle. You will probably continue to do everything in your power to extend your life span but you will know in the back of your mind that cancer can change the rules of the game at any time. These realizations help explain why so many women in these situations suffer severe anxiety, depression, and PTSD. The universe is not unfolding as it should. It is unfolding in a way that makes little sense to us mere mortals.

This is not to say that all is doom and gloom for any breast cancer patient or survivor. Most patients do recover their emotional equilibrium relatively quickly. Cancer may have made them aware of their own mortality sooner than they expected but there is still plenty of joy to be found in day to day living. There may be a greater appreciation for family and good friends. We may feel more grateful for the little pleasures in life that we once took for granted.  The little things that used to drive us crazy may no longer even make a dent on our emotional radar. They say don’t sweat the small stuff. After cancer, most of our minor annoyances definitely turn out to be small stuff.  
 
Those of us who suffer from PTSD may face a tougher road back to regain our positive psychological health. We may look fine on the outside, return to full- time employment, and make every effort to get on with our lives but the emotional quality of our lives may still be wounded and damaged. Some of the signs that you may be suffering from PTSD are: flashbacks or nightmares about cancer or treatment, blanking out and forgetting important parts of the cancer process, feeling emotionally numb, feeling continually hopeless and helpless, loss of enjoyment in activities that used to bring you pleasure, suicidal thoughts, and being hyper-sensitive to anything that reminds you of your cancer or its treatment. The advice given by the Mayo Clinic is that if these feelings persist and are interfering with your life, you should seek professional help at the earliest opportunity before the symptoms become further entrenched and harder to treat.

To minimize psychological distress no matter where you are in your cancer journey, using self care techniques will make the process easier. Activities that promote relaxation such as meditation, yoga, or massage can help you deal with stress. Having someone to talk to, whether it is a friend, family member, or a professional will help with sorting through the difficult feelings you may be experiencing. Finally, an in person or online support group with other women going through cancer can help you to see you are not alone and that there are others who understand exactly what you are feeling. Sometimes just knowing that your feelings are shared by many other women across the world can help you feel normal in the very unnormal world of cancer.

Sharon Greene  December 16, 2014

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