Category Archives: Recurrences

Cancer Changes Everything


image

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.

image

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.

image

Posted from WordPress for Android

Advertisements

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


image

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.

image

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

Posted from WordPress for Android

Is There A Hypochondriac In The House?


image

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?

image

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

Posted from WordPress for Android

Having Breast Cancer 4 Times


image

Some people skip my posts as they don’t want to know that breast cancer can strike more than once. They believe that my story must be a real downer as who wouldn’t be depressed to have their cancer come back again and again and again? Others look to find differences in their stories from mine to reassure themselves that this will not happen to them. I don’t know how many people have asked me if this whole mess couldn’t have been avoided if I just had a double mastectomy with my first breast cancer at 29? Hindsight is usually 20/20 but even my oncologists aren’t convinced that would have stopped the cancer from coming back. I had new primaries, not recurrences, and it is very possible they still would have grown in my mastectomy scars. I would like to assure you my story is not all doom and gloom and there are many positive conclusions that can be drawn from my story.

I wrote at length as to why I made the treatment decisions I did in my blog post entitled. Why I Chose Not To Have A Double Mastectomy.  Basically, it was a combination of historical reasons (double mastectomies were not offered as an option in 1988 when there was cancer in only one breast), lack of the medical knowledge we have now (there was no disease called triple negative breast cancer then as the third component -herceptin – had yet to be discovered) and genetic testing did not exist until Cancer 3 and the early tests were less comprehensive than they are now. I in fact had BRCA testing in the mid-90s and was told I was negative, a “fact” I believed for the next 16 years, although I later learned I had a major BRCA1 mutation.    
                                                                    The other factor consisted of personal reasons for choosing the options I did. With no internet and no support groups for young women with breast cancer, I did not even know of young women with mastectomies, let alone double mastectomies. I was 29, then 34, and then 36 when my first 3 breast cancers struck. I was single, childless, and reconstruction surgery was not terribly advanced, and I adamantly didn’t want a mastectomy. I got one anyway at 34 when my cancer returned in the form of a new primary in the same breast that had a prior lumpectomy and radiation treatment. Mastectomy was the only option. Reconstruction was very bad and it turned me off from having a second mastectomy when cancer struck in the other breast 3 years later.

In any event, it serves no purpose to speculate if things would have turned out differently had my treatment choices been different all those years ago. I made the best decisions I could at the time in consultation with my doctors based on the state of medical knowledge at the time and my personal preferences for treatment.

To be a 4 time cancer survivor without Mets who has lived almost 27 years since the time of first diagnosis is like being a medical unicorn. There aren’t many like me around. My mother battled 4 different types of cancer in a 12 year period – breast, metastic ovarian, and 2 different types of colon cancer, the second one metastic. Other than that, I don’t know anyone else with a cancer history similar to my own. It can be a lonely feeling at times, not having any real life examples of others who have walked a similar journey. What happens next? Do I live to a ripe old age, dying for reasons unrelated to cancer? Is there going to be breast cancer 5 and if so, will this be the one that metastisizes?  Will the earlier cancers metastasize and put me into Stage 4 cancer territory? The doctors have no answers for me. So a big part of having had 4 different breast cancers is the uncertainty on the part of myself and my doctors as to what happens next.

Having cancer multiple times, plays havoc on your mind and emotions. Just when you think you are “cured” and cancer is a thing of the past, it rears its ugly head again, announcing, “I’m back…”  Having one bout of cancer is incredibly stressful to your body, mind, and spirit. Having it 4 times is downright demoralizing, with the initial thought each time that I can’t go through this yet again. But really what choice do you have? If you want a shot at living, you”ll have the surgery and take the chemo and/or radiation recommended. Having watched an aunt die from completely untreated cancer, that is not a path I’m willing to take. Unfortunately for me, experiencing the trauma of cancer over and over again, led to depression, panic attacks, and ultimately PTSD. I am finally getting the professional help I need to tackle these issues. In a culture that says breast cancer patients have to be brimming with positivity all the time, this fake front I believe contributed to my PTSD condition. Never being able to acknowledge how you really feel about going through treatment one more time, can lead to a crazy-making life.

image

Another thing that I have had to grapple with is survivor’s guilt. Why have I been able to stay Mets-free and survive 4 different aggressive triple negative breast cancers with a highly defective BRCA1 gene? Why do others get breast cancer once, have it metastasize, and die from the disease while mine functions more like a chronic disease that flares up every now and then? I have no answers to this question. No answers at all.

The flip side of survivor’s guilt is that hopefully it takes away people’s fears, at least a little bit, when the newly diagnosed hear my story. So many women come into the online Facebook groups that deal with triple negative breast cancer, already convinced they have been handed a death sentence. Others worry that they have been diagnosed with a BRCA gene and that combined with triple negative breast cancer, dooms them to a short life and an early death. I try to point out that I have had high grade triple negative cancer 4 times and have a major BRCA1 mutation and am still alive and kicking almost 27 years later. I have not been a model cancer patient by any means but I am still alive. Neither triple negative cancer nor a BRCA mutation or both necessarily mean an immediate death sentence.  I hope my story helps to reinforce this message and allows the patient reading it hope for a long future. The 4 bouts of cancer are a very rare occurrence and it is my wish that people stop fixating on the 4 times and focus on the 27 years of extended life.

Sharon Greene  January 23, 2015

Posted from WordPress for Android

Finding My New Normal After Losing My Old Normal


Iwpid-53aeeb4e69e587cd5b9d5a17633ac875.jpg

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


image

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.
 
 

wpid-a8ee6eeb6df9dd104940126bd13c4cc2_1.jpg

 

 
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.

image

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

2014 in review


The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here's an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 11,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

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.

image

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!
 

image

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

Posted from WordPress for Android

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 aheadwpid-christmas-pug-cute-little-gog-in-santa-hat_fj-oqt_u-1.jpg

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!

image

Sharon Greene December 11, 2014

My Breast Cancer Came Back


wpid-wp-1416094864318.jpeg

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.