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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It’s My Cancerversary…And I Don’t Feel Like Celebrating

After 4 breast cancers since 1988, I’ve lost track of the usual markers of cancerversaries. I can remember month and year of diagnoses but can no longer keep specific dates in my head. Also, there is confusion about what date to use for 3 of my cancers where the words and behavior of mammogram technicians and doctors resulted in my”knowing” I had cancer before the official biopsy results were in.

In any event, February 1988 marked my first breast cancer diagnosis at 29. That makes it 27 years of “living on borrowed time” as that first cancer was caught by me through a fluke of accidentally touching the right place at the right time and following up immediately with my doctor. Had it not been for the accidental touch, the tumor would have continued to grow and may well have spread into Stage 4 cancer.

Last year, I was very excited about making it to 26 years since first diagnosis. Maybe part of what makes me uneasy about claiming 27 years of survival is that I had a total of 4 breast cancers during this period. Other people seem to count their survival status as cancer free time and start counting again from zero once they have had a recurrence. If that is the “right” way to do things, I guess I am only a 3.5 year survivor as my last breast cancer was in July, 2011. Do people think I am a fraud claiming 27 years of survivorship when many of those years were spent in treatment for new primary cancers and recurrences? I am always careful to say 27 years from first diagnosis so I don’t think I am misleading anyone.

What really has me bothered this year is that for the last 6 weeks or so, my Facebook feed has been filled by the deaths of so many young breast cancer patients. It seems every 2 or 3 days, someone from one of my Facebook groups has passed on, leaving a young family behind.

This year I felt uncomfortable announcing 27 years of survival from first diagnosis under the circumstances of all the surrounding death in the air. Some people say they draw hope from my longevity, particularly in light of the multiple bouts of triple negative cancer, my BRCA1 status, and my lack of what would now be considered optimal treatment for someone with my history.

On the other hand, I don’t doubt that it strikes resentment in some people’s hearts that I continue to live despite all the odds stacked against me while others die shortly after diagnosis or after being told their prognosis was excellent as their cancer was detected early, they received aggressive treatment, and they were BRCA negative.  Announcing 27 years of longevity in this atmosphere, seems a bit like bragging or gloating, which is the last thing I want to do. I have no idea why I am still alive considering all the cards stacked against me. All I can do is get philosophical and say this just isn’t my time to die. I have no secrets for longevity or avoiding Mets and we all know I have no secrets for avoiding recurrences!

Along with the tragic death announcements, there has been an increase in the  amount of posts from women speculating on what caused their cancer and what they can do to prevent a recurrence. I have no answers for either causation or prevention. I have said before that cancer seems pretty random to me striking both triathlete vegans and self-admitted couch potatoes and everyone in between. I have yet to see a strong pattern or have an aha moment where all the pieces of the puzzle fall into place for me. The same goes for recurrences and metastasis. Those who radically change their eating habits and make other lifestyle changes seem as likely to have their cancer come back as a recurrence or a metastasis as do those who change very little. After 27 years of watching cancer prevention tips come and go and sometimes be turned completely around (I just read that high doses of soy are good for preventing cancer after 20 years of it being cited as a cancer promotor), I personally have little faith in these promises of prevention or a cure.

Along with the string of deaths, there seem to be an unusually high number of women experiencing either local recurrences or Mets. The combination of the deaths and the disease progression have created high levels of anxiety in the support groups. You start to wonder if you are next in line for some cancer catastrophe to strike your life. This probably explains all the comments about cancer causation and prevention.

I want to feel good about my 27 years of post-diagnosis survival. The road has been hard and bumpy and like everyone else, I have no idea what is around the next corner. I have spun the cancer Wheel of Fortune 4 times now and have been lucky to have only local recurrences. But how many times can you spin that wheel and avoid the slots marked for metastasizes and death? I think I have used up all my get out of jail free cards and if forced to spin again, I don’t anticipate a 5th local recurrence.

Intellectually, I know the deaths and disease progressions will level out in time. But in the meantime, these events are extremely stressful for everyone involved. It’s not a good time to be celebrating a long-term
cancerversary in the midst of all this pain.

So I will be privately pleased to still be alive and able to watch my children grow up. At the same time, I will continue to mourn for the lives lost or forever altered by new recurrences or metastic disease. This will be a very quiet celebration of life and one that I will not take for granted. Thinking of my fallen pink sisters, I think “there but for the grace of God go I”.

Sharon Greene. February4, 2015

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Is There A Hypochondriac In The House?

Ask almost any cancer survivor about whether they have become a bit of a hypochondriac, and the answer is usually a resounding yes. I have a confession to make. I swing from extreme hypochondria to total denial of any symptoms I may have. When you have a disease that can travel to your lungs, bones, liver, and brain (and sometimes skin, pancreas, ovaries, and uterus, particularly if you have a BRCA mutation), that pretty much covers most of the human body.

Most of us didn’t start off as hypochondriacs. It almost seems to be a standard side effect of the disease. It doesn’t help to be living in a time where medical symptoms and their potential causes are a mere Google search away.

We are not stupid people. We know that we can get non-cancer related illnesses like the flu, arthritis, and broken bones due to trauma. But still the aches and pains of everyday living take on a new urgency when they could be the early signs of bone or liver or brain metastisies, particularly if we don’t recall doing anything that would have brought the pain on in the first place.

Reading metastic disease questions and answers can really put a scare into you. Someone will invariably ask, “how did you know you had bone or brain or lung Mets?” and the answer is often a vague recollection of pain in a hip or frequent headaches or breathlessness. And it is so easy to think I have pain in my hip or bad headaches or trouble catching my breath when I climb up a flight of stairs. That realization combined with a short visit to Dr. Google can be enough to convince you for an hour or a night or a week that you too have metastatic cancer.

It really doesn’t matter if the medical literature says that rarely do bone Mets strike below the knee or elbow. Google cancer of the hand or foot and you are bound to find a case study or 2 of some poor person who had this rare metastasis strike them. If they can get it, why not you?

Much of this crazy making hypochondria strikes once treatment has ended and you aren’t due to see your oncologist for another 4 months. You don’t know if you are overreacting or if in fact you are experiencing early signs of metastisis. Many cancer agencies have a nurse on call who can help evaluate your symptoms over the phone. Your family doctor can also be a source of comfort in checking out more common reasons for your symptoms. As they taught us in law school, if you hear hoof beats outside your window, think horses, not zebras.

Some of the rules of thumb I have learned from my medical sources is to wait a few days and see, for example, if the body aches were early signs of a cold or flu or muscle strain from an activity you may have forgotten.  Keep a record of your pain – the type, duration, whether it is worse at night, and if over the counter medicines relieve it. If it is getting worse or is keeping you up at night, by all means get it checked out. It may still be non-cancer related but it needs to be checked out if only for your peace of mind. And sometimes it really is a herd of zebras rushing by your window so better to be safe than sorry.

A lot of the hypochondria does disappear with time, once you have experienced symptoms that can be explained as coming from non-cancer sources. If you have had a cancer recurrence or new primary, the hypochondria will return with a vengeance. If your body can get cancer again after surgery, chemo, and/or radiation, why couldn’t that cancer have spread before the recurrence was detected?

There are no easy answers. Sometimes a recurrence has already spread to distant body parts. These should be picked up by various scans or MRI’s. Other times, your bodily pains are mere coincidence or are actually brought on by the stress of a new cancer diagnosis. For example, pounding headaches, nausea, and an upset stomach can be an an emotional reaction to the stress of a recurrence being diagnosed and not a symptom that the cancer has spread elsewhere in the body.

I can give a few examples from my own life to illustrate how this has affected me. When I was first treated for cancer, every piece of scar tissue seemed like a new lump. There were a few trips back to the surgeon to be checked out, more mammograms, and even a biopsy just to be sure. After hearing the message scar tissue over and over again, I eventually calmed down and stopped looking for symptoms. Shortly before my 5 year “cure” check-up, I stepped funny off a curb and broke my ankle. I chalked it up to bad luck and went to my 5 year mammogram in a cast and on crutches. When they found a new breast tumor, I was suddenly convinced that cancer had spread to my ankle bone. No matter how many people looked at the x-ray of my ankle, I was convinced I had metastic cancer of the ankle. Finally a bone scan and ct scan ruled out any metastisis to the bone and eventually, I believed the doctors.

Something similar happened after my last cancer when I tripped on the bottom step and somehow broke my foot. It had seemed like a nothing accident and again it took a whole team of doctors to convince me this was just a freak twisting accident and not evidence of bone cancer of the foot.

Finally, I had a week of burning pains in my scalp followed by what looked like hives on one side of my face. It wasn’t scalp or skin cancer. It was shingles. Painful awful shingles on half of my scalp and face but nothing that was cancer related.

Over the 27 years of fighting cancer, I have self-diagnosed myself with a brain tumor, lung Mets, hand cancer, and a few other medical oddities. Every time I am proved wrong, I become more reluctant to have my symptoms checked out for fear of being seen as the complete neurotic I truly can be.

Some of us find it hard to draw the line between thinking the worst of every bodily pain and knowing when it is time to seriously check things out. My inner compass doesn’t function very well anymore after so many false alarms. I have swung to the other side of the pendulum, not getting things checked out in a timely manner. I ignored the raging cough that lasted for 6 weeks and left me exhausted only to find I had raging bronchitis that could have been treated weeks earlier. I am now so paranoid about being seen as a hypochondriac that I let things drag on for way too long, creating both mental and physical pain that could have been treated more promptly.

Have you found a balance between hypochondria and getting attention for legitimate health complaints? If you have any suggestions as to how to strike the proper balance, I’d love to hear from you in the comments below. If this is something you still struggle with, I’d love to hear from you too.

Sharon Greene  January 28, 2015

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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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Happy Holidays From Cancerland

It is almost that time of year again. The shopping malls have been decorated for Christmas since Halloween. Almost every radio station is playing Christmas music around the clock. If you have young children, they are excitedly waiting for Santa to come and visit. If you have preteens or teenagers, they are preparing their holiday wish lists and fully expecting Mom to buy them every item, no matter how high the cost.

Christmas movies paint a serene picture of the family hanging stockings together, opening the perfect presents (no socks or underwear) under a magnificent Christmas tree, and gathering together at a table groaning under the weight of every food imaginable. Some families probably do have Disney worthy Christmases but for most of us, there are some less than picture perfect moments.

I recall Christmases where my daughter was so excited, she threw up under the Christmas tree. Then there were the Christmases of my youth where people would start drinking too early and by dinnertime would be rude and belligerent. (This was also usually accompanied by someone throwing up). The presents were often bought during the peak of the holiday shopping season in understaffed stores filled with testy shoppers, creating huge amounts of stress. The feast on the table was often prepared by one woman, usually Mom, who baked cookies for weeks and was up at the crack of dawn preparing the turkey and side dishes. The poor woman was so exhausted by dinnertime that she couldn’t even enjoy the food she had so painstakingly prepared.

These less than perfect holiday moments can be enough to throw a healthy person into a tizzy. Now throw breast cancer into the mix and it is easy to understand why many patients and survivors dread the winter holiday season.

It isn’t just Christmas or Hanukkah that bring forth these feelings of anxiety and dread. Thanksgiving, children’s birthday parties, New Year’s Eve, and anniversaries can also be difficult times for patients, survivors, and their families. Although this post focuses on Christmas, it is called “happy holidays” for non-politically correct reasons. The issues outlined below can surface on any special event where people are supposed to be celebrating with others and the expectation is that everyone is filled with happiness and joy.

If life was fair, cancer would be diagnosed or treated on a calendar system in which these events would only occur at the least stressful times of the year.  I was going to say they would only occur at a convenient time but there is no convenient time of the year to have cancer.

Unfortunately, people receive cancer diagnoses or news of recurrences or metastases year round, including right before the Christmas season (or other important events). The shock of receiving this kind of news makes it difficult to want to celebrate and be festive with distant relatives or friends. As well as trying to process the bad news, there is often a sense of guilt about ruining everyone else’s Christmas/Hanukkah/Kwanza if you talk about cancer. Somehow rushing around the mall for presents or cooking a major meal seems trivial and pointless in the larger sense of the life and death issues you are facing. You may not be ready to share your news with the extended family, yet at the same time, cancer is all you think about. New Year’s Day with its emphasis on making resolutions for the year ahead

can bring on depression if you are worried that this may be your last year alive. Even if you don’t anticipate dying, it is hard to make positive resolutions when you know you will be spending much of the new year facing surgery, chemotherapy, and/or radiation treatments.

For those already in treatment or recovering from surgery, there are even more challenges to face. You feel unwell. You ARE unwell. All the preparations for the holidays are too overwhelming to cope with. There is no way you will be baking, cooking, and cleaning, to prepare a feast for a crowd of people. Even preparing a simple Christmas meal with only your immediate family may be enough to knock you out for the next few days.

If you are having chemotherapy, the smell of certain foods may make you feel nauseous. Chemotherapy often affects the taste buds making even favourite foods taste unpleasant. Painful mouth sores can make any kind of eating feel like torture. Fatigue and loss of appetite are also common side effects of chemotherapy. Finally, you may be warned by your oncologist to avoid crowds as your immune system is weakened. Shopping malls and large family gatherings may be more than just exhausting. They may make you so sick, you end up hospitalized. This happened to me 3 years ago and I spent the entire 4 day Thanksgiving holiday in the hospital with a fever and a white blood count of zero.

Radiation treatment and surgery bring on their own challenges. As well as feeling exhausted, you may be in pain from radiation burns or in all the places where the surgeon cut into your body. You may be taking heavy duty painkillers that wreak havoc with your mind, appetite, and digestive system. You may not have the energy to sit up for long periods of time socializing and making small talk with people you are not especially close with the rest of the year.

Even when active treatment has come to an end, the depression and anxiety associated with losing your medical safety net can leave you feeling less than merry or jolly. The holidays are difficult for most depression sufferers as the rest of the world looks so happy while you feel hopeless and miserable inside. Your fears of a recurrence or metastasis may be heightened right after treatment has ended and the oncologist says, “see you in 3 months”. It’s a scary time as you try to transition from full-time cancer patient to finding your “new normal”. People may be expecting you to bounce right back to your old life once treatment ends. You may feel like you still have one foot in the cancer world and the other foot in mid-air, looking for a safe landing spot in the post-treatment land.

BRCA1 and BRCA2 families have their own special problems with family celebrations. They may be grieving the loss of those relatives who were taken from the world too soon because of cancer. Those who are previvors may worry about their own upcoming surgeries or question their decision to opt for surveillance. Watching the young children and teenagers of their extended families, they may worry as to what lays ahead for them in the future.

For some people, the holidays may still be fun and joyous as it is a welcome distraction from thinking about cancer. You may welcome the break from the trudgery of treatment. Depending on the type of gathering, you may only be surrounded by the people you love most in the world and find their company soothing and comforting. Particularly if you have children, you may make an all out effort to give them great Christmas (or birthday) memories just in case things go terribly wrong and you want them to remember you as something other than a sick Mom.

With my 4 cancers, I have been in diagnosis, treatment, or recovery mode on every major holiday and special event over the years. During Cancer 4, there was Thanksgiving in the hospital, my then 11 year old son’s birthday party at Chuck E. Cheese, and my then 9 year old daughter’s birthday party at a go cart track on a very windy day, while clutching onto my wig for dear life! It wasn’t always easy and it wasn’t always fun, but I’m glad we made some good memories on those occasions. Christmas and my birthday also fell during chemotherapy but both of those events were very low key affairs as that was all I was capable of doing at the time.

The truth is nobody actually lives in a Disney movie, not the healthy and not the sick. Christmas or Thanksgiving or your birthday can be whatever you want it to be and whatever you are capable of doing. If you want company and all the trappings of Christmas, see if someone else can do the heavy lifting for you. Instead of you making the dinner, see if someone else can host Christmas this year. Or choose to celebrate more casually with your immediate family at home or at a Christmas buffet in some fancy restaurant where you won’t be forced to make small talk with a relative you barely know.

To cut down on holiday stress, avoid the shopping malls and make all your purchases online. Spring the extra few dollars for them to be gift wrapped. Let your children decorate the tree however they want, no matter how untraditional the results may be. Do everything you can to pamper yourself, whatever that may look like to you. Get a lot of rest, take deep breaths, and don’t be afraid to reach out to someone, anyone, for help. Create a holiday that brings you peace instead of stress, joy instead of anxiety, even if it means abandoning all your former ideas of what a traditional holiday should be. Happy Holidays to everyone in Cancerland and to all the people who love them!

Sharon Greene December 11, 2014

My Breast Cancer Came Back

I heard the whispers, words I wasn’t meant to hear. “Did you know her cancer came back?” whispered a colleague I had known for 20 years. “Is she going to die?” was the new colleague’s response. The first colleague replied, “Not likely. She just gets cancer whenever she wants time off work. She never dies.” The words cut me to the bone, leaving me hurting yet strangely numb at the same time.

There really was no need to whisper about my diagnosis at work. I never hid the fact that I had breast cancer in the past. I was surprised the gossip mill had started so soon as very few people knew I had been diagnosed with breast cancer for the fourth time. I had only just received the news myself and had told those in management I would be taking extended sick leave once again once I had a surgery date.

The comments confused me. I get cancer whenever I want time off work? Surely there are easier ways to take time off then having another mastectomy and more chemotherapy. I never die when I am diagnosed with cancer? Well that has been true so far but at that point I had not had any scans or tests to see if the cancer had spread. At that point, all I knew was the cancer was back after a 16 year reprieve since cancer number 3.

“She never dies” rang in my head the rest of the day. Do they really want me to die to prove I actually was sick? Do they not understand the physical and emotional toll breast cancer and its recurrences take on an individual? Would having a funeral make everything better for people so they could recast me as a heroic figure battling cancer to the bitter end instead of just a physically and emotionally battered woman trudging through treatment over and over again? The one thing I have learned about recurrences is that their negative effects are cumulative over time. Each recurrence is emotionally harder than the one before. Each time your recurrence is contained before it spreads throughout your body makes you feel you are living on borrowed time and that your luck will run out eventually.

The message that is repeated over and over is that once you reach the 5 year cancer free mark, you are “cured” of cancer. This may be true for many people but it is not universally true for everyone. Many people have local recurrences of cancer in the same breast where they had it the first time. They may develop new primary breast cancer in the other breast or more rarely like me, develop a new primary cancer in the same breast. The pathologists decide if it is a recurrence or a new primary cancer based on how closely the second tumour resembles the first. If the second one is markedly different than the first, or if it occurs in the other breast, it is considered a new primary breast cancer. If it is a recurrence, it is thought that surgery/radiation/chemotherapy left some cancer cells behind that grew and multiplied to form a new tumour. As long as the recurrence or new primary is confined to the breast, it cannot kill you. It is only when it spreads beyond the breast(s) or mestastisizes to another body part, that it becomes lethal. Once that happens, there is no longer any talk of curing the cancer, only treating it until the treatments stop working.

Recurrences/new primaries produce interesting responses in people. With my first breast cancer at 29, my divorced parents who hadn’t talked to each other in 8 years, rallied together and stayed with me for weeks during surgery and radiation.

When my second cancer in the same breast was diagnosed at my 5 year “cure” mammogram, my mother had died 6 months earlier and my father made many excuses why he could not make the trip a second time. This was the first cancer that happened while at work and most of my colleagues rallied around this scared 34 year old facing a mastectomy and chemotherapy. They treated me as though this was my first breast cancer. I know that the night of my mastectomy, numerous work colleagues were gathered around my hospital bed. I was groggy and in pain but was aware enough to know that they were there and they cared. In the weeks that followed, many workmates dropped off food and accompanied me to my chemotherapy appointments. I felt supported, cared for, and loved.

I felt a litle less love from the local breast cancer community. The first time around, doctors and social workers went out of their way to hook me up with other breast cancer survivors. Granted most of these women were 40 – 50 years older than me who had lived long and full lives, but I appreciated the effort. With the first cancer, I had a very proactive medical social worker who hooked me up with relaxation groups, guided meditation groups, and the only support group they had at the time for patients battling all kinds of cancer.

By the time of my second cancer, I was pretty much left on my own. No volunteers, no social worker, and I had to beg to see a real live person who had reconstruction surgery. One finally showed up the night before my mastectomy but had a completely different surgery than I was having. I had the same breast cancer surgeon as I had for the first cancer. I couldn’t help but feel he was less interested in answering my questions this time around. I guess I was one of his failures for not quite making it to the 5 year
cure mark. He just kept drumming into my head that I would have to wait an additional 5 years to get pregnant or my baby could very well be left without a Mommy. Sometimes during that experience, I felt like the medical professionals viewed me as just another Dead Woman Walking.

The cancer struck my other breast 2 years later. I had barely returned to work and then was off again for surgery and radiation. By now, I was quick to pick up the signals that something was wrong with my mammogram. The technician would call me back into the room for a few more mammograms. Then she would disappear, returning with one or more people, who would whisper among themselves. At one point, I swear a whole group of student trainees crowded into the mammogram room, looking intently at the pictures. I would say “what are you seeing?” and the original technician would tell me there was nothing to worry about, this was just routine. I’d had enough mammograms by then to know this was anything but routine. When I got the official news from a doctor a couple of days later, it wasn’t exactly an overwhelming surprise.

My Dad was too busy to come visit once ago. I had a new boyfriend who I would eventually marry (and divorce) who took good care of me. We even bought a puppy to aid in the healing process. Again, this was his first time dealing with my breast cancer so he was supportive.

By this time, my colleagues were suffering battle fatigue dealing with my illnesses. There were a few meals, a lot less visitors, and more people who felt I should bounce right back. This was my third new primary breast cancer in 7 years and I was feeling beaten down and not terribly bouncy. Cancer surgery in the late 80s and the mid 90s involved removing all the lymph nodes under the arm on the side of the cancerous breast. This procedure is not the routine anymore but at that time it was and it made even a lumpectomy a gruelling operation with an extended recovery period.

Also, each time there is a recurrence/new primary, there are a battery of scans of the liver, brain, lungs, and bones and numerous blood tests to see if the cancer has spread. Each new test is nerve wracking as you never know what may turn up. I have been very lucky so far that the cancers have been caught before they spread beyond the breast.

I noticed when I started radiation treatments after Cancer 3, the other women would be friendly while we waited our turns. If however I said this was my second time doing radiation or that this was breast cancer number 3 at age 36, the women would clutch their floral housecoats tighter around themselves and would instinctively move a little farther away from me, as if my repeated cancers were contagious.

I lucked out for the next 16 years. No cancer. I went for a routine mammogram and was called back for more pictures. The technologist told me to wait in the mammogram room while she went to check something. When she said more pictures were needed, I demanded to speak to the radiologist as I knew something was wrong. To my surprise, the radiologist did enter the mammography room. He stared at his shoes the whole conversation. He obviously didn’t talk to patients very often. He said there were calcifications on the mammograms that were highly suspicious for a malignancy. He had reviewed my prior mammograms and what he was seeing was new. I pushed him harder on what “highly suspicious” meant until he said he was almost 100% certain it was cancer again, but only a biopsy could provide the absolute truth. I was immediately sent for an ultrasound where no tumour could be found. Even after referring to the mammogram, no lump or bump could be felt. The surgeon thought this meant it was a tiny cancer caught extremely early. She was in no rush to schedule a biopsy or a surgical date.

Things started going off the rails at the biopsy. Even with the mammogram, they weren’t sure they were hitting the right spot so the needle went in over and over again. When it was confirmed to be triple negative cancer again, the scans started. My sternum lit up on the bone scan. It had been broken 4 years earlier and they couldn’t be sure if they were seeing the break or cancer. The CT scan showed a web of tiny blood clot embolisms at the bottom of my lungs. As I had a spontaneous pulmonary embolism in one lung five years before, they immediately started me on blood thinners and debated delaying the surgery. The surgery went ahead as planned and to everyone’s surprise, it was 2.7 cm in size, making it a Stage 2 cancer. The reason it couldn’t be felt was that it was deep inside, close to my chest wall. The pathologists are evenly divided as to whether this was a new primary or a recurrence that had been hiding in my body for 16 years.

By this time, my father was in a nursing home and I didn’t even tell him about the new cancer. I was a single Mom with 2 children, then aged 9 and 11. Some of my work colleagues did get together and raise money for flowers and groceries. 2 of them would visit me at least once per month while the rest kept their distance. One friend brought over her husband and brother-in-law and they and my kids did a good job housecleaning. I had a medical social worker again and she helped with getting me free rides to chemo and getting me into 2 healing touch sessions.

This month marks 3 years since I finished my last chemo. After numerous CT scans, the radiologists have concluded that the bright light on my sternum during bone scans comes from trauma not cancer. The blood clots on my lungs disappeared after 6 monthes of daily injections in my stomach with blood thinners.

Having multiple recurrences has taken a huge emotional toll on me. I no longer have faith in my body. It has betrayed me too many times. I no longer believe in an orderly universe where good things happen to good people and bad things happen to bad people. The universe seems pretty random to me. Cancer survival seems especially random to me. Every day on Facebook, I read about another woman with breast cancer who has died. Very often they are young and leave small children and a grieving partner behind. These were women who ate organic foods, ran marathons, and looked after their bodies. They did everything right and yet were struck down in the prime of their lives.

Although I have had a double mastectomy, there is no guarantee I won’t get another recurrence/new primary breast cancer again. No matter how close they cut, it is impossible to remove every single breast cancer cell during surgery. I could probably summon the emotional strength to battle a recurrence/new primary for the fifth time, if only for the sake of watching my children grow up. But what worries me is that I have been playing Russian Roulette with breast cancer for 26 years now. I have been wounded but am still sitting at the table, waiting for my turn to press the gun to my head. How many times can you stare death in the eye and walk away still alive? One of these times, a new recurrence/new primary won’t be caught and treated in time. Or like 30% of women initially diagnosed with Stage 1-3 breast cancer, there will be no recurrence, just the dreaded metastasis to brain, bone, lungs, or liver from cancer cells still lurking in my body even after the last surgery and chemotherapy.

I read in so many forums how women are terrified of having a recurrence. Please remember if it is local to the breast, it can be treated and life will go on. It is metastasis that you need to worry about as for that there is no cure.

Have you had a recurrence/new primary since your initial treatment? Did you have early stage cancer that you thought was cured but it metastisized elsewhere? Please share your experiences in the comments below.

What the Media Doesn’t Tell Us About Breast Cancer

Over the past 2 decades, the media
has painted a picture of the ideal breast cancer survivor. We see a smiling white middle aged woman telling the world how she beat breast cancer with her positive attitude and her unwillingness to ever give up the fight. She doesn’t just stop with the lessons of how she beat breast cancer. She continues her story with how having conquered cancer, her whole life has changed for the better. To her, cancer was the greatest gift she ever received from the benevolent universe.

We sometimes hear that her reconstructed breasts look better than
they did pre-cancer. How lucky she was to have gotten a free boob job! The hair loss was a bit of a drag but it grew back better than before. She speaks of how breast cancer has brought her closer to  her friends and family.  Breast cancer was a tiny blip in her life, no more annoying or life threatening than a root canal. Breast cancer has been described as the “good” cancer to get as everyone wears pink, races around a lot, and nobody ever dies.

I have no doubt that this does represent reality for some breast cancer survivors. It is also possible that some of these smiling women have repressed the worst aspects of their breast cancer experience and are choosing to only publicize the positive things that happened along the way. They present their stories through a gauzy pink veil that filters out the bad memories leaving only the good. We don’t see pictures of the very young or the pregnant or the Stage 4 breast cancer patients. We don’t see many pictures of women as they are trudging through treatment, pale and bald.  We don’t hear about the single mothers who go through treatment with little family support. We don’t see the black faces or the Asian, or the Hispanic ones. The media has painted a simplified and unrealistic picture that doesn’t accurately reflect the many faces or feelings of breast cancer.

The problems with this stereotype are many and they are troubling. Most survivors I”ve met in person or online do not relate to breast cancer being the greatest experience of their life. They remember the fear they felt when first diagnosed. Until they had the tumour removed and all the tests done, they didn’t know if the cancer had spread and if they were already dying. They remember the pain of their treatment, whether it was surgery, chemotherapy, radiation, or some combination of all  three. They may have received a lot of emotional and practical support during the diagnostic and the early treatment phases of their cancer only to find people slipping away the more time passes.
 
        
If they had reconstruction on one or both breasts, there may have been multiple painful surgeries involved with tissue expanders, implants, or the removal of another body part (skin and muscle from the stomach, back, or buttocks) to create the new breast(s). The end result of this surgery may still leave them with body image issues with the reconstructed breast not matching the natural one, the implant becoming hard and encapsulated with scar tissue, or even the body rejecting the transplanted body part and the person being left with no breast(s) at all, either temporarily or permanently. And what is never mentioned is that even if the reconstructed breasts look cosmetically wonderful, almost all feeling and sensation is gone. Forever.

Women are often fearful of the cancer recurring again or it spreading and metastisizing to their bones, lungs, liver, or brain. They may fear leaving young children behind should their cancer spread and they die.  They may find their shaky marriages dissolving from the extra weight of a cancer diagnosis. They will soon learn who their true friends are and will watch others in their life simply disappear as news of their breast cancer becomes known.

About 10% of breast cancer patients will learn that they are already Stage 4 at the time of the initial diagnosis. Another 30% will reach this stage eventually even if their initial cancers were caught at an early stage. There is no Stage 5. Stage 4 means the cancer has already spread elsewhere in the body. It can only be treated, not cured. Stage 4 is the only kind of cancer that kills although medical advances have allowed women to live longer with Stage 4 cancer than ever before. But for these women, chemotherapy and other treatments may go on for the rest of their lives, to keep the cancer from spreading even further.  They will never “beat cancer”. Their stories aren’t popular in the media.

Other women like myself will have cancer recurrences or grow new primary breast cancers in the same or the other breast. We do not die from local recurrences but the fear is even greater the second (or third or fourth time around). We know we are pushing our luck on the cancer wheel of fortune. How often can we keep catching recurrences in time before they spread into distant body parts? You don’t see many women in commercials saying I thought I beat cancer once but then it came back and I am in treatment again. This doesn’t fit with the storyline that if it is caught early and you survive 5 years, you have beaten cancer.

Stage 1 – 3 patients may be strong and full of fighting spirit while going through treatment but then fall apart when treatment ends. This is a fairly common occurrence as it feels that
your medical safety net is gone without the constant monitoring of your health by medical professionals. While active treatment can be very tough, there is still something reassuring about being seen by a medical team on a regular basis. Also, cancer treatment is like a full-time job with numerous appointments to see oncologists, plastic surgeons, and lab technicians. It is easy to set milestones and goals – 1 chemo down, 5 more to go. Treatment gives structure to your days and a final goal to keep working towards – the end of treatment. When that abruptly comes to an end, many survivors are left wondering, “what happens now?”

Friends and family may not be as supportive now that treatment is over. They feel that the worst is over now that you have completed surgery , chemotherapy, and/or radiation. They move on to other people and things, leaving you alone at a time when you might need their emotional support the most.                      

You may feel pushed and rushed by others to immediately resume your pre-cancer life once treatment ends and to put all that negative cancer stuff behind you. You may question yourself as to why you aren’t bouncing back from treatment more quickly like your friends, family, and the pink media ladies say you should. Your doctors may tell you to find your “new normal” before you even have had time to reflect on the very abnormal process that you have just experienced. 

Once you have had cancer, every follow- up oncologist appointment and every new scan, mammogram, or blood test brings anxiety levels up sky high again. Every new headache could be a brain tumour and every new ache and pain could be a sign that the cancer has spread to your bones.

You may wonder to yourself what you are doing wrong – why you didn’t find your pot of gold at the end of the pink rainbow.   

It does a disservice to those newly diagnosed and those just starting their cancer treatment process to portray breast cancer survivors as a uniformly brave, strong, courageous, and positive group of women. We survivors are all those things and more. But we are also scared, anxious, in pain, confused, disoriented, and angry at times. And that is normal. And that is okay.

Doctors have known for decades that a cancer diagnosis is an extremely stressful event and freely hand out anti-anxiety medication throughout the treatment process. They have heard their chemotherapy patients complain for years about “chemo brain” where forgetfulness and short term memory loss are common features that linger on after chemotherapy ends. They know many women suffer from the shock of a completely altered body with their breasts removed by mastectomy, their hair lost to chemotherapy, and their reproductive systems pushed into early menopause, either temporarily or permanently, by chemotherapy. New American studies have shown that approximately 25% of breast cancer patients will suffer from post-traumatic stress disorder sometime between diagnosis and the end of treatment. European studies have placed that number at closer to 50% of patients.

Many of these newly diagnosed women are in their 20’s and 30’s, just starting careers or families. Many received their breast cancer diagnosis while pregnant or while still breast feeding shortly after giving birth. Others are encouraged to undergo fertility treatment before starting chemotherapy so that their eggs can be frozen in the event that premature ovarian failure or permanent menopause prevents a future pregnancy.

More women each year are being tested for genetic defects that can hugely increase their risk of breast and ovarian cancers. If they test positive for a mutation, they will be strongly encouraged to have a double mastectomy and to have their ovaries and fallopian tubes removed by age 35. If they test positive for a mutation, this becomes a family affair with the whole immediate and extended family having to decide if they too should be tested to see if they also have the same genetic mutation. If a woman already has children, she will learn that each of her children, male and female, have a 50% chance of also inheriting this mutated gene. As genetic testing is not carried out on children, she will have to wait until they turn 18 and decide whether to get tested to see if she has passed her mutated gene onto her children.

It can be encouraging to read stories of women who have survived for many years after a cancer diagnosis without a recurrence or without the cancer spreading. All the memes on the internet urging you “to fight like a girl” or “to beat cancer’s ass” or even the more blunt and to the point, “Fuck cancer”, can be very empowering for both the woman undergoing treatment and the long term survivor. But I know for myself that it is difficult to stay in fighter mode 24 hours per day, 7 days per week. Again, speaking only for myself, I can’t live on a constant diet of positivity messages when I read or talk about cancer. It is like living on a high sugar diet. After awhile, the sugar buzz fades and I come crashing down. Hard.

Cancer has definitely changed my life, not always for the better. I need to read about the struggles of the newly diagnosed, the stories of women going through treatment, and especially the stories of the women with Stage 4 cancer. I need the grit of painful reality so I don’t forget where I came from and what I went through. I need these stories so I don’t sugar coat my story for the next person struggling with some of breast cancer’s less positive realities, thinking to myself that cancer or treatment or facing multiple new primaries wasn’t all that bad. It was that bad and some days still is. What is your cancer story? Do you prefer only to read positive stories or can you make room for some less positive ones as well?

Sharon Greene November 23, 2014

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How the BRCA1 Gene Devastated a Small Family (Mine)

My mother, Lily Koval Brown, died exactly 22 years ago today of metastatic cancer. Her sister Joyce Koval Lamb died of metastatic cancer July 4, 1984. Their stories are completely different as mine is from theirs, but the one thing we all had in common was a mutation in our BRCA1 gene. Of course at the time of their deaths, the BRCA genes had not been discovered so it seemed like a sad coincidence that both died of cancer and that I, my parent’s only child, had breast cancer at 29.

One of my earliest memories of discussing breast cancer with my mother was watching an old 60’s movie on tv called “Valley of the Dolls”. In that movie, one of the characters played by the actress Sharon Tate (later to be infamously murdered by Charles Manson) learned she had breast cancer. Her solution to dealing with this disease? Suicide.

I remember my mother commenting that there was no way anyone would ever remove her breast. This was in the mid-70’s when breast cancer was firmly in the closet. It was also easy for my mother to make this comment as cancer didn’t seem to run in our family. With only her parents in Canada and the rest of the extended family still in Russia, we had no real idea if cancer did or didn’t run in our family.

I am not sure when my aunt first noticed the lump in her breast. It had to have been before 1979 as that year, at the age of 19, I moved to the city where she lived, not knowing a soul. My mother asked if I could stay with her for a short time or if she could at least help me find a place of my own. I gather the answer to both requests was a panicked no but she would be happy to talk to me by phone whenever I wanted.

Two years later, my parents split up and my mother moved to the same city where my aunt and I lived. She could never get my aunt to meet her in person although they did have long friendly telephone conversations. We didn’t suspect anything sinister about my aunt’s refusal to meeting us in person. We speculated she had grown eccentric and reclusive over the years although she was only 50.

Things came to a head when my mother was diagnosed with breast cancer in 1980. She never did have to make the decision about choosing her breast or choosing her life. The doctors recommended a lumpectomy, a new operation that spared the majority of her breast. This procedure was so new that radiation was not part of the treatment program. While my aunt sent a bouquet of flowers, she still wouldn’t make the effort to visit in person which hurt my mom deeply. The telephone conversations became fewer and shorter until they ceased completely.

The next news we had of my aunt came from her husband 2 years later. She was in the hospital as she had stopped breathing. My mother rushed to the hospital without any forewarning of what to expect. She found a skeletal woman in a hospital bed who appeared to be about 10 months pregnant.

My mother pieced the story together as best she could. It started with a breast lump that my aunt refused to get checked out by a doctor. Somehow over time, the cancer became physically apparent which was when she became a recluse. She had no medical diagnosis or treatment whatsoever until the time of her hospitalization. I still don’t know exactly what her cancer status was. It’s safe to assume she started with breast cancer but whether the huge abdomen was from metastatic breast cancer that had spread or if she developed another primary cancer or 2 along the way, no one knows for sure. The medical staff wanted to start chemotherapy but she refused as she didn’t want to lose her long hair. It wouldn’t have made much of a difference at that stage as her cancer was too advanced. She died a few days later in the hospital, long hair still intact.

My mother was flourishing in her new single life. She was always very upbeat and made friends quickly wherever she went. She reached the 5 year “cure” rate for breast cancer and we talked about how she made a much better decision about her cancer than her sister did. There was no thought of the cancer striking another part of her body, despite my aunt’s swollen abdomen, as we assumed this was just what untreated breast cancer looked like.

Fast forward a year and I got a call from my Mom that she would be having surgery for suspected ovarian cancer. They found her cancer had metastisized throughout her whole reproductive system and there was a further inoperable tumour behind her heart. She spent a year in a very aggressive chemotherapy program that resulted in long term side effects such as loss of hearing in one ear. She was determined to beat cancer and had the support of her many friends and work colleagues. Her hospital rooms always seemed like party central with people packed into the small room. If a positive attitude and social support could cure cancer, my Mom would still be alive today.

I had my first breast cancer two years later at 29. She flew to the city where I was now living and stayed with me through my lumpectomy and 6 weeks of radiation. The only time she was less than supportive of me was when she learned I had signed up for a clinical trial that would compare patients given one round of chemotherapy before surgery to those that had surgery alone. She did not want me taking chemotherapy under any circumstances. As it turned out, I was in the surgery alone group, so much to her relief I escaped chemotherapy that time around.

My Mother made it to 4 years past surgery for ovarian cancer only to learn she had developed a third primary cancer in her colon. The cancer was surgically removed and she had a temporary colostomy bag that she would have to wear for a year. Coming home from the hospital, she broke down crying tears of frustration and anger. It was one of the few times she ever showed me what an emotional and physical toll all these cancers had on her mind, body, and spirit.

A year passed and she had the reversal surgery for her colon cancer so she no longer needed to use the colostomy bag. She had now passed the 5 year mark for metastic ovarian cancer and the 10 year mark for breast cancer.

She had about 10 more good months of life. The best thing I did was spontaneously make the 12 hour drive to visit her in the summer of 1992. Everything seemed to be going great and we planned a side trip to a national park in Montana. On the day we were to leave, my mother sheepishly asked if I would mind cancelling our trip as she wasn’t feeling well. She strongly encouraged me to drive back home even though I had planned on staying a few days longer.

Reluctantly, I returned home. Within a week she called to tell me she would be having colon surgery again as another mass had been found. I talked to her surgeon after the operation who confirmed that it was colon cancer again but a completely different type than she had the first time. He also said they found metastic disease throughout her liver and there was nothing left to do that would prolong her quality of life. I asked how much time she had left to live and he paused, looked at me, and said maybe 6 – 9 months. He was either being overly optimistic or he found it easier to lie to me to give me hope. He said my mother was a remarkable woman having fought so valiantly against 4 unrelated cancers, hitting the 5 year “cure” rate on 2 of them. Maybe he wasn’t lying about the time she had left. Maybe he thought she would beat the odds one more time despite the grimness of the prognosis. In any event, I made plans with my mother for a trip we would take as soon as she got better. She gave me a sad smile but nodded along with all my dreams and plans.

About 6 weeks later, I received a phone message at work telling me to come quickly as my Mom only had 2 days left to live. I basically lived in the hospital room with her for the next 17 days until her body finally gave out. Her appearance was shocking as she had lost so much weight in the top half of her body that she barely resembled the woman I had seen 6 weeks prior. Her legs had become enormous from fluid build-up from her cancerous liver. I believe the cancer had spread to her brain as she became increasingly paranoid and suspicious of her food being poisoned and medical staff planning to kill her. She would have lucid moments – she planned her own funeral from her hospital bed – but near the end, she had seemingly lost all her words, communicating only in guttural sounds. The last semi-lucid conversation I had with her was that she had something important to tell me but she couldn’t do it in the hospital. She wanted me to meet her downtown. As that was impossible, I never learned what her important message to me was all about. I still wish I knew.

Although I spent 17 days bedside in the hospital, my mother clung onto life. Finally, I asked the nurses if I could leave for an hour to shower and bring new clothes. Of course, it was in that hour abscence that she finally let go of life and passed away. I saw her before anyone had time to pretty her up and she had the most incredible expression on her face. I can only describe it as a look of awe, as if she was seeing something perfect and wonderful. My mother’s final gift to me was to remove the fear of death. I have a lot of fear of the dying process but never again would I fear actual death.

It took until 2011, after an initial false negative on the first BRCA test I took, to learn that I was BRCA positive. By extension, so were my mother and my aunt. Unlike my aunt, I found my first breast lump myself and was checked out and treated immediately. Like my mother, I have had 4 primary cancers but mine have so far all been confined to the breast. My mother’s first breast cancer was at 50 while mine was at 29. She had 4 primary cancers in a 12 year period while I had 4 primary cancers in a 22 year period. 3 of my primary cancers occurred over a 7 year period.

My family was small to begin with and the BRCA1 gene cut a devastating path of destruction across my family tree. I have felt like an orphan since my mother died when I was 32. She has missed so much in the last 22 years. I have been roughed up by life quite a bit which has humbled me. I am no longer the spoiled brat only child I still was when she left me. She missed my marriage (and divorce), the adoption of my 2 wonderful children that she would have spoiled and adored, and any number of wonderful and terrible things that have happened through the years. I wonder what she would think of my double mastectomy, my 2 courses of chemotherapy, and the fact I had my ovaries removed as a preventive measure. Given her fighting spirit, I think she would have approved, despite her fears of mastectomy and chemotherapy.

There were so many times I thought that I have heard her voice in a crowd or smelled a perfume that made me think of her. It took a few years before I stopped automatically dialing her number on the phone to tell her some big news. Even 22 years later, I still miss my Mom so much it’s like a physical ache in my heart. I hope someday we will make that trip downtown together so she can finally tell me the important thing she wanted me to know.

Sharon Greene November 17, 2014

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Goodbye Pinktober… see you next year.

Goodbye October with its pink ribbons, pink merchandise, and silly pink uniformed  athletes. The color pink in October symbolizes breast cancer awareness month. Some people run races for “the cure” while others buy pink trinkets that promise to donate some (tiny) portion of the purchase price to an unspecified breast cancer charity.

There is a lot of controversy about Pinktober in the breast cancer community. Many survivors hate it as all the money spent on “going pink” translates into very little money spent on actual breast cancer research for better lives, better treatment, or an actual cure for the disease. After the merchants and the big cancer charities take their cut of the profits and donations, the little money left goes to promoting breast cancer awareness and to organizing more pinktober races and events for the next year. I think it is safe to say that the majority of the nation is already very aware that breast cancer exists. They may not be aware that early detection and yearly mammograms do not always save lives. Some 30-40% of us continue to die of the disease. There is nothing pretty or pink about any kind of death from cancer.

When I was first diagnosed with breast cancer at 29 in the Dark Ages of 1988, Pinktober didn’t exist. Neither did the internet with its information and support groups. It was still seen as an old ladies’ disease and at 29, I had no sense of community with others in my age group that were fighting this disease. I would have loved a pink ribbon and people running races on my behalf. Pinktober did what it set out to do and took breast cancer out of the closet and into the light.

But with that goal accomplished, Pinktober has turned into a massively commercial operation, a lumbering elephant, that exists with no clear purpose anymore. Instead of going pink, try donating directly to Metavivor, one of the few breast cancer charities that actually spends all its donation money on research for a cure. Or better yet, if you know someone with breast cancer, offer to drive them for treatments, look after their kids for a few hours, or bring by some groceries or a few home cooked meals. This will do more to support those living with the disease than all the pink ribbons or Save the Tatas teeshirts you can buy.

Happy November everyone! No more pink for another year. Thank God.

Sharon Greene November 3, 2014

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