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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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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