A Letter To My 29 Year Old Self

Dear Sharon,

I am here with you on this February morning of 1988, watching you sleep. I am taken aback not just by your youthful appearance but by a look on your face I haven’t seen in years. Even in sleep, your face shows a look of optimism and blind faith that everything in your life will turn out alright.  You still innocently believe that the universe is a fair and orderly place where good people are rewarded and bad people are punished. I wonder if this is the last time you will ever look like this or if it takes a few more days or weeks for that innocence to disappear forever.                                                   

You think you are going through a rough patch right now due to recent personal losses. By the time this day is over, the break-up with your boyfriend and the lay-off from your job will be the least of your worries

Your big plan for the morning is to get onto the typewriter and prepare cover letters for your resume so you can end this spell of unemployment. But your plans are about to change in four…three…two…one. Good! You are awake. Time to stretch your arms overhead and accidentally touch your left breast. Ah…do you feel it?

You have had lumps and bumps in your breasts before but this one feels somehow different. You touch it again, this time deliberately, and then touch the other breast for comparison’s sake. There is nothing at all similar anywhere else in either breast. Watching your face, I see your eyes grow wider and a mixture of fear and confusion crosses your face.                                                               

I watch you hesitate and then reach for your address book that contains your doctor’s phone number. I watch you talking to the receptionist and see the surprise in your face when she tells you there has been a cancellation and the doctor can see you in an hour.

There is no time to think. You are still telling yourself that you are bothering the doctor over nothing. Everyone knows 29 year olds don’t get breast cancer. They don’t get breast cancer at 29 even if their mother battled both breast and ovarian cancer in the last decade. Breast cancer is for menopausal women not young women in their 20’s. Part of you wants to call the office back to cancel the appointment. I am here to whisper to you that this is one appointment you must keep. Not really knowing why, you find yourself at the doctor’s office waiting to be examined.

The doctor said it will probably just be a cyst but given your family history, it is good that you came to have it checked out. You note the doctor’s smiling face turn into a frown as she feels the lump for herself. There is a hospital across the street from her office and she makes arrangements for you to see a breast surgeon that very afternoon. She explains that he will try to drain the lump with a needle and if it is a fluid filled cyst, it will collapse and that will be the end of the matter.  You notice that she is smiling too brightly and talking a bit too fast.  

I see the shadows of fear and doubt starting to take root on your face. As much as I would like to tell you that everything will be okay, I know how this part of the story ends. I can only whisper to you again that this is yet another appointment you can’t afford to miss.

I can read your thoughts. You feel like time is moving way too fast. The day’s events are hurtling forward like an out of control train on a too short track. You cross the street and wait to see the breast surgeon. You wonder what it feels like to have a needle stuck in your breast.

You don’t have long to wonder. You are disrobing yet again and having your second breast examination of the day. Once again you see the doctor frown when his hand examines your lump. He takes out a needle and thrusts it into your breast. When he withdraws it, you note that it is not filled with fluid. It is not a cyst. It is solid. Just watching you, I can see the anxiety solidifying on your face and I can almost feel your stomach dropping in fear.

You are sent to another floor for your first mammogram. It hurts, particularly after just having been subjected to the needle. When you return to the surgeon’s office, he tells you a surgical biopsy will be required to tell if it is benign or cancerous. There is a deadly silence after the cancer word is spoken. You find yourself asking the doctor what he thinks it is. As soon as you say those words aloud, you want to take them back. You don’t want to hear his answer.

He tells you only a biopsy can truly determine if it is cancerous but then adds that the physical exam and the mammogram are highly suggestive of a malignant tumor. You don’t hear a word he says after that although you do manage to stumble to the receptionist’s desk to book a biopsy appointment in a few days time.

You slowly walk back towards your apartment, unaware of the tears flowing down your cheeks. A random man calls out to you not to cry, no guy is worth your tears. This makes you cry harder and you race home to avoid any further attention. All you want is to talk to your Mom and have her hold you. She lives 500 miles away so a long distance call will have to do. I look closely at your face. Your eyes have the startled look of a deer caught in the headlights. The blind faith optimism has vanished from your face, never to return again.  You know you have breast cancer even though it hasn’t been officially diagnosed yet. You want to know what happens next, how you will ever go on.

I came from the future to answer your questions and reassure you that there will still be good times ahead. But how can I tell you that this won’t be your last cancer? How do I say that it will come back again and again and again? Even I don’t know the final ending to our story. I look at your shattered face and do not think you could handle the news of all the challenges that lie ahead of you. It will be easier for you to just live and survive them one by one the way I did.

So I will rip up this letter I have been writing to you as I think it would do more harm than good. I wish there was some way to let you know that there is happiness ahead as well as pain but I can’t tell you about one without telling you about the other. I would love to restore the unthinking optimism to your face but I know it is gone for good. For us, the universe is a disorderly random place where bad things can happen to good people.  Just know that you are going to live at least 26 more years and that you will get to be a mother to 2 children you will love very much. It is going to take a very long time for you to come to peaceful terms with yourself but I guarantee it will happen.

Good-bye for now old friend. Please forget I ever was here whispering in your ear. Just know my whispers saved your life this time.

Sharon Greene  January 8, 2015
Age 56

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Parenting With Breast Cancer

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sharon Greene January 3, 2015

Why I Chose Not to Have a Double Mastectomy

Ok, I’ll admit that the title of this article is slightly misleading. But only slightly. I now have a double mastectomy but it took 22 years from first diagnosis and 4 bouts of breast cancer to get there. I never did choose a double mastectomy. It just kind of happened when I had exhausted all other treatment options.

When people hear that I am a 4 time survivor, they shake their heads and wonder why I didn’t have a double mastectomy when I was first diagnosed with cancer. The reasons for the decisions I made were partly historical, partly personal choice, and partly based on the medical advice I received at the time.

Historical and Medical Reasons

My first diagnosis of breast cancer was in 1988. This was at a time where women’s health advocates had been fighting for years to provide women with breast conserving options after many decades of the standard treatment being the Halstead radical mastectomy. This operation bears little resemblance to today’s mastectomies as all the chest muscles and structure were removed along with the breast, leaving a large hollow on that side of the chest. By all accounts, this was a horribly disfiguring surgery that almost guaranteed the patient life long problems with the arm on the side where the breast had been removed. The 1980’s brought in a new surgery – the lumpectomy – which removed the tumour and a wide area around it which allowed women to keep part or most of their breast, depending on the size of the tumour and the size of the breast. The removal of a big tumour in a small breast would be much more disfiguring than the removal of a small tumour in a big breast. Lumpectomy combined with 6 weeks of radiation treatment was found to have comparable results for mortality and reoccurrence as a full mastectomy (removal of breast with chest muscles left intact). These same statistics hold true today, except for women like me who have a genetically based cancer. The prevailing mood of the times was that the lumpectomy and radiation regime was a huge step forward for women taking back control of their bodies from the male dominated medical profession.

The knowledge base in the 1980’s was much more limited than it is today. Today we recognize at least 5 major types of cancer: lobular, inflammatory, hormone positive, herceptin positive, and triple negative, the type that I have. In 1988, herceptin had not been discovered and without knowledge of its existence, there was no category for triple negative cancer as the triple means the cancer is not fueled by the hormones estrogen and progesterone nor by herceptin. It is now often said that triple negative cancer is the most aggressive cancer but in 1988, all that could be said was that my cancer was not caused by hormones. We now know that the prescence of triple negative cancer in a young person often leads to the conclusion that the cancer is hereditary in nature. I was diagnosed at 29. The average age for breast cancer patients is 55-60.                
             
There was no genetic testing for breast cancer as there is today. There was the knowledge that having a family history of the disease was a risk factor but there was as yet no proof that some cancers were due to a genetic mutation in the BRCA1 or BRCA2 genes. A family history was just one of many risk factors that could make a person more likely to get breast cancer, no more or less significant than failing to have a pregnancy before 20, failing to have breast fed a baby, or having an early start to menstruation. I had all of these factors working against me so while the doctors noted my young age as being unusual for this disease, the combination of all my risk factors provided some explanation. My young age in itself did not set off any warning bells as it would today.

I was given the option of either a single mastectomy or a lumpectomy with radiation. No one would have even considered suggesting a double mastectomy as the other breast was seemingly healthy. Why cut off a perfectly healthy body part in a 29 year old woman? It was pretty much assumed by the doctors that I would go the lumpectomy route as I was a young unmarried woman with no significant other and no children. I did agree to meet with a plastic surgeon to see how they could reconstruct my breast if I chose a single mastectomy. Let’s just say reconstruction surgery has progressed tremendously in the last 25 years. Looking through the book of photos that the plastic surgeon proudly showed me,  I was appalled and horrified at the results. Thanks but no thanks! I”ll have the lumpectomy if you don’t mind. Doctors, family, and friends all assured me I’d made the right decision.

I stayed healthy and was cancer free until I went in for my 5 year check-up. I always thought that if you made it to 5 years, your cancer was cured. Unfortunately, another lump was found in the same breast. Lumpectomy was no longer an option as you can only have radiation treatment on the same breast once. My only option this time was a mastectomy and 9 months of chemotherapy. I was 34 when I had a mastectomy on my left breast. The pathology report again said I had hormone negative cancer but it was much more aggressive than the first tumour had been. The pathogists concluded that this wasn’t a recurrence of the first cancer but was a brand new primary cancer. I was told that even if I’d had a mastectomy at 29, I still would have gotten cancer again 5 years later. Again, no one suggested a double mastectomy as triple negative cancer still hadn’t been discovered and genetic testing wasn’t available.

Two years later at 36, a mammogram of my right breast showed a tiny cancer that was too small to be felt. Having breast cancer 3 times in 7 years at my age was highly unusual but my family doctor was the only one to push me towards a second mastectomy. Genetic testing was now just becoming available so I agreed to having a lumpectomy immediately and would have a second operation for a mastectomy if I was found to have a genetic cancer. The type of genetic testing that was available at the time only looked for the wrong “lettering” in the parts of the BRCA 1 and 2 genes that had been decoded to date. In other words, if the code was supposed to be ” “abcd” and your code read “abcf”, the test would catch it and would compare your code with others with the same lettering to see if it had been linked with breast cancer. They did find one wrong letter in my coding but it was of “unknown significance” (and still is 18 years later) as there weren’t enough people with this particular variation to determine if it was associated with breast cancer or not. I was basically told that unless I heard otherwise, to assume I did not have a hereditary cancer. The doctors called it a new primary cancer as it was in the other breast but assured me that as it was caught so early, the likelihood of recurrence or metastisis was miniscule.   (We now know that early detection doesn’t always work that way and many people do have recurrences and metastasis even when caught at such an early stage). So the breast stayed after a lumpectomy and another 6 week stint of radiation.

I was cancer free for the next 16 years, only going for yearly mammograms. I felt pretty damn safe after all that time. Cancer was a thing of the past, something I had seemingly outgrown. But in 2011, the mammogram
picked up some calcifications in my right breast that were highly suspicious for cancer. I had my second mastectomy in 2011 followed by a different type of chemotherapy than I had when I was 34. It was at this time that I learned I was having my fourth battle with triple negative cancer. The pathologists had retested the old tumours to come up with this finding. They saw that each cancer was progressively more aggressive than the one before. The pathologists are divided as to whether this was my fourth new primary cancer or if this was a recurrence with the previous cancer cells hiding and evolving in my body for 16 years. I was urged to be genetically retested as the tests could now also look for things other than rearrangement of the coding letters. The retest showed that I was missing a large portion of genetic material at the end of my BRCA1 gene. The genetic counsellor described it as being like a book with the last 4 chapters ripped out. It took 22 years to learn I had genetic triple negative breast cancer. The deletion in my BRCA1 gene also put me at a high risk of getting ovarian cancer so after chemotherapy was over, I had my ovaries and tubes removed as a preventive measure. Just as having a mastectomy does not guarantee you won’t get breast cancer again either in the scar tissue or metastisized to some other organ, ovary removal does not mean you can’t get cancer where your ovaries used to be. But I’m keeping my fingers crossed that 4 bouts of cancer are enough for one person!

Personal Reasons

My first three cancers occurred in my 20’s and 30’s. While there were support groups available, I never met anyone who was even remotely close to me in age. I thought I was the only one my age going through this. I was single, trying to re-enter the dating market, and couldn’t imagine doing so without a breast. (After all, who wants to date the only 29 year old woman in the world without a breast?) The reconstruction pictures I saw at 29 were frightening and the actual reconstruction I got at 34 was even worse. I was not anxious to do the whole thing over again at 36 when it was such a tiny cancer that had been caught early. And by 36, I had done my due diligence, gone for genetic testing, and had been cleared for hereditary cancer. Coupled with that, my mother had a lumpectomy without radiation in 1980 and her breast cancer never came back. By the time of my first cancer diagnosis, she had not only survived breast cancer, but she had also battled ovarian cancer 3 years earlier. By the time of my second cancer, she was dead from her second bout of colon cancer but her breast cancer never came back.

Call me vain and shallow for wanting to keep my breasts as long as I could. That’s okay. It was a different world then. Breast cancer was still stigmatized, I was insecure, I was scared, and I had no idea my genetic make-up predisposed me to having cancer after cancer. My present oncologist believes I still would have had multiple breast cancers even if I had double mastectomies back in 1988 as like my mother, I get new primaries not recurrences.

I try to imagine what I would have done had medical science been more advanced, had complete genetic testing been available, and had I been living in a world of online support groups for young women. A world like today where breast cancer is fully mainstream and there is a whole month of the year dedicated to raising awareness of the disease. Would I have done things differently? Maybe, but I don’t know for sure. Even if all my choices were wrong, breast cancer is such a crap shoot that I find myself still alive and kicking 25 years later while so many others who did everything right are dead. Breast cancer isn’t just or fair. I carry my fair share of survivor’s guilt but that is a topic for a whole other post.

Sharon Greene November 5, 2014

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