The Guilt of Being a Cancer Survivor
Guilt? How can someone feel guilty for living? How can someone feel guilty for surviving the beast invading their body? I never understood "survivor's guilt" until I became a survivor myself.
Everyone has a story. Everyone has people around who love and depend on them. I was a young mom when I was diagnosed. My son, who was 3 at the time of my diagnosis, does not even remember the majority of our trauma. He doesn't remember what I looked like without hair. He doesn't remember not being able to hug and kiss me. Thank G-d.
Catherine was a mother is 3 children, the same age as mine. She owned her law firm and fought Triple Negative Breast Cancer 4 times before it took her life. Near the end, she would show me pictures of how the cancer literally ripped her skin open. It was painful to watch.
Marie-Elaine was a grandmother who not only gave so generously to her own family, but to those around her. When she saw on Instagram that my elderly dog can no longer jump on my bed, she insisted I come over and take the doggy stairs from her house.
Tasha, also a young mom had metastatic breast cancer. She traveled to the USA for experimental treatment, always dressed to the nines with a huge smile on her face. Sadly, she passed less than a month ago.
And Ellie. Sweet Ellie. A month younger than my boy Zachary. She died two weeks before her 9th birthday. There are no words.
These are just a handful of people I knew personally who lost their battles with cancer. Hearing about these passing's brings on a vulnerability and a reality about my own life. Why am I thriving while others are not? I am far from perfect - why am I still in this world when a child is not?
I am very cognizant of the fact that I am four months away from my big 5 year mark. When I was diagnosed with cancer 5 years ago, life was pretty damn close to perfect. We had just moved into our dream home, my brother just had his first child, I was in the best shape of my life, and we were traveling with my husband's ENTIRE family to Los Angeles for a big event. Cancer then swooped in and threw our world upside down. Today, life is good. My daughter is starting high school in a few short weeks. I am working out and getting stronger everyday. My dog is still with us, at 15 years old. Our house is still under renovations, but beautiful as ever. Do house renos ever stop? I think not!
Will our world be taken away from us again?
The back of my mind is always counting to those five years. In two weeks I have my appointment with my oncologist and the anticipation is palpable. Its been 6 months since my last blood tests. What makes me different than those people who have passed away from their cancers? What makes me different than those diagnosed with metastatic cancer? I am no better than them, no stronger than them, and not more loved than they are. Is it just a numbers game?
There is not a day that goes by where I do not think about those who we lost. Friday night Shabbat candles, I pray that they are at peace. I pray that their families are getting stronger every day.
If their deaths have taught me anything, it is that people like me need to continue the fight for those who cannot. I need to bring awareness and help raise money. I need to walk, run, bike, and whatever else is required of me to continue their fight. I will do interview after interview to remind others the importance of knowing their bodies. I will do what I can as often as I can.
To all those who have lost their lives to cancer, your deaths are not unnoticed. I will fight for our children and our grandchildren to hopefully live in a world without cancer. You may be gone, but you are never forgotten.
Double mastectomy tattoo
When my daughter was a year old, she fell and split her nose open. It was a horrific scene. She had four stitches across that little baby button nose of hers. Walking down the aisle of my brother's wedding three days later, we will always have pictures of that poor little munchkin in her gorgeous dress, but a face full of stitches. Now, though her scar is faded, it still remains. Most people don’t notice it, but of course we always know it’s there. When she has a suntan, her scar is more visible and she sometimes makes a comment about it.
A few months before my diagnosis of cancer Alessia Cara came out with her song "Scars to your beautiful". This song got big around the time of my surgery, and my kids now say that it’s my song. Not only am I scarred from my mastectomy, but I have two scars around my clavicle from my port-o-cath I had during chemo, four scars from my hysterectomy, and four scars from my drains. I hate those port-o-cath scars, a constant reminder of my chemotherapy. My veins were tired and painful from having so many chemotherapies and blood tests, that I underwent a procedure to put this port in so my chemo goes directly there instead of poking me for IVs. The port scars are visible in almost every shirt I wear. While my surgery represents me overcoming cancer, the port is surrounded by pain and suffering. My kids were so happy when the port was removed. Though it was under my skin, my son was scared of it. It was sensitive to the touch, and the kids had to be careful when snuggling me.
When "Scars to your Beautiful" comes on the radio, my kids sing (with mostly the wrong lyrics of course) at the top of their lungs. To my kids, my scars represent happiness. They are proud of their mommy's battle wounds. Those scars are proof that mommy beat cancer.
I don’t know whether it’s the song, my scars, or both, but my daughter has recently embraced her scar. She started calling it "our song" as is proud of her scar. Her scar tells a story, and she loves to tell it.
With so many songs out there that are inappropriate for little kids, I love the message this song has. My daughter is breath-takingly beautiful. She has thick long dark hair down to her bum, big beautiful blue eyes, and deep dimples in her cheeks. She is mini, but has an explosive personality that makes her the center of attention wherever she goes. My daughter's face is beautiful. My daughter's scar is beautiful.
None of us are perfect. We have scars and stretch marks and all sorts of imperfections. Our scars are beautiful. It is time we embrace them.
BRCA Gene Mutation
The first time that I had ever heard about the BRCA gene was, like many, when Angelina Jolie spoke out about getting preventative surgery. I did a little bit of reading on it at the time, but never thought much about it again.
When I was diagnosed with Breast Cancer, not even a month after my 35th birthday, I was in shock. I started going over aspects of my life. I was at a good weight. In fact, I had never been as fit and in shape as I was at the time of my diagnosis. I drank socially, and never smoked. The "WHY" kept haunting me. My cancer was Triple Negative, meaning it is not fueled by hormones. Maybe I should have eaten organic. Maybe I should have had even less to drink. I needed to have a reason for it.
One day as I was meeting with my oncological surgeon, I was introduced to a woman who worked in genetics. She sat with me and we went over my family history. In fact , there wasn't much to discuss! There was no history of cancer in my family. She did a risk analysis and decided that I have a high probability of having a BRCA gene mutation due to the fact that my cancer was Triple Negative, I was young, and I was Ashkenazi Jewish. I was already a few months into chemotherapy at this point, and was scheduled to have a lumpectomy after my treatments were over. I was scheduled for a simple blood test which would tell me if I had the gene variant.
People with the BRCA gene mutations have an increased risk of certain cancers, most notably Breast and Ovarian cancers. In addition, those with the gene mutation also have a higher risk of being diagnosed with cancer earlier as opposed to later in life.
About 13% of women will be diagnosed with breast cancer in their lifetime. By contrast, 55%-74% of women who have a harmful BRCA1 gene will be diagnosed, and 45%-70% of women who have a harmful BRCA2 gene will develop breast cancer. When looking at the numbers for ovarian cancer, about 1-2% of women will be diagnosed in her life. Those with BRCA1 have a 40%-45% chance, and those with BRCA2 have 11%-18% chance.
When I received the confirmation that I had the BRCA1 gene mutation, it was actually a relief. I had my "why". My parents, my brother, and my close family members also needed to get tested. To me, knowledge is power, and I was "happy" to take one for the team if it meant that I can save the lives of those I love. I would die if my brother or one of my parents got sick. Here, with this knowledge, I was potentially saving my parents, my brother, my kids and my niece and nephew. I was good with that. The fact that my lumpectomy was being changed for a double mastectomy was a thought that needed some time to settle, but I almost immediately started researching mastectomy tattoos. I decided that it was the "badge of honour" that I wanted if I was removing my breasts. I texted my gynecologist to ask him if he would perform my hysterectomy. No menstrual periods for the rest of my life? You didn't need to twist my arm!
A child has a 50% chance of inheriting the BRCA gene variant. While I do not want either of my children to suffer, I also find solace in the fact that they will be monitored early on in life and will have control over their medical future. If my daughter ends up with the gene, she will be able to make decisions over what to do with her body - be it preventative surgery or close monitoring.
It has been three years since my surgeries. While I see my oncologist regularly, there is no need to see my surgeon for my breasts, as I do not have real breasts. I can of course develop a secondary cancer, but I have no fear of a breast cancer recurrence and therefore do not need to perform breast exams.
Do I stress about my kids and niece and nephew inheriting the gene? Not at all. When I was a child we did not know about this gene. Maybe in ten years from now when my daughter is an adult they will have a simple medication that can inhibit the faulty gene from causing cancer. If not, the kids will be equipped with a team of doctors who can help them make the right choices for their bodies.
Your friend or loved one has been diagnosed with cancer and you don’t know to say
Do I ask them details? Do I tell them that everything will be ok? How do I react?
When I was diagnosed, my friends and loved ones had all sorts of different reactions. Some cried, while others were tough and assured me that I was going to be ok. Some dropped off food, while others would send me a daily text to tell me that they were thinking of me.
It’s a delicate situation and often can be uncomfortable. You don’t know what to say or what NOT to say. Here are some helpful tips:
The biggest question I found that my loved ones had, was surrounding chemotherapy. Most people (myself included!) did not know what chemo looked like and it made them nervous. Once I explained how chemo looked for me, I found my friends and family wanting to take turns to take me for treatment. It became the social outings that I desperately needed, chatting, laughing, and having lunch. Everyone found my lack of patience amusing, and I would constantly press my call button to move onto the next step of my meds. Most importantly, the energy on the chemo ward made a world of difference. It was not somewhere that was scary and sad, rather a place of warmth and love.
It is okay to not know what to say. Even if your exact words are, "I don't know what to say but I love you." One of my biggest fears was that I would be left behind - that my friends and coworkers will go on with their lives and forget about me. I will leave you with this quote that struck a chord, and a copy of a text message from my teenage cousin when he found out that I was sick.
"The worst thing someone said to me was nothing at all."
Remission. Cancer free. Whatever you want to call it, life does not return to normal after treatment, something I learned the hard way.
I returned to work quickly after treatment. I was anxious to get back to my normal life. It quickly became apparent though that I was living a new type of normal. I was still in a wig, and had to deal with stress surrounding THAT. When will my wig come off? What will the kids at work think if they see me with a "buzz cut"? I was always known for my long blonde hair.
When I met new people, I found that I felt like there was this secret luring over my head. At what point does the topic come up? HOW does the topic come up?
Remission isn't only the end of my battle, but it was the start of my acceptance to life after treatment. It was living with a "me" who is NOT the most fit, who has some quirks and post-traumatic stress issues from cancer, etc. My muscles and bones ached like I was 85 years old.
Most days, I do great. My scars are just part of who I am, and my hair is back to normal. I have finally recently started to lose my weight that I gained during treatment. Other days however, I get thrown right back into it.
When I started working again after treatment, I would develop irrational fears of hurting myself. I was scared to slip on ice or something and would picture people saying, "She survived cancer!..... but broke her hip" I had a panic attack the morning of our first family vacation and we almost canceled. We went. My kids deserved a vacation. They deserved to enjoy themselves after the hell I put them through. I cried and spent most of the time in bed. I didn't know HOW to live again.
A few weeks ago, my irrational fear appeared again, but this time it was because it became a reality - I had a biking accident. Lying in the emergency room, I wasn't sure what the damage was yet, but I knew it was bad. Because it was a trauma, I went to a different hospital than the one where I was treated for cancer. I didn't know these people. This place did not feel like "home" like the Jewish General Hospital did. These people didn't know me and had to ask my medical history.
As the nurse gave me morphine by IV, I started to cry. I felt like I was going to pass out. I had a flashback. I tasted the morphine and it brought me back to chemotherapy. The nurse tried to calm me and assure me that the pain would subside. Unable to catch my breath and speak through the tears, I exposed my port-o-cath to her. My badge of honor. My tell-tale sign of what I had been through.
Last week I reached the four year mark of having "No Evidence of Disease". The big FIVE to officially be "Cancer Free" is less than 365 days away. Realistically though, are we ever actually free from cancer? Do we ever experience a trauma, have an ache or a pain, and do not automatically think of our cancer? Though we may became medically free from cancer, our scars are a reminder that it is always part of us.
I am learning to live my new normal. I understand that it is OK to mourn the pre-cancer Joy. Hurting myself post-cancer was such a great fear of mine, and here I am, thriving with my injuries. They are temporary.
I do not know what the future holds for my health, but I need to keep in mind that nobody does. Nobody has that super-power to see into the future.
Today, I celebrate my health. I celebrate that....
Long story short, I survived.
Life was pretty close to perfect...We had moved into our dream home, my kids were beautiful, and I was in the perfect job. My 35th birthday landed on the holiday of Purim, so we had friends and family over to celebrate. We were leaving in a few weeks to LA for a family bar mitzvah. My daughter was in her first season of her dance competition team. We were so happy.
One day my bra was uncomfortable but I assumed it was just getting old and the underwire might be poking me. The kids went to bed, and I went to take off my bra to get in my pajamas. My bra looked fine, so I decided to give myself a breast exam, and that's when I felt it. A lump. It was probably the size of a golf ball. How was this possible? I checked myself regularly because I had a friend at the end of her own breast cancer battle. Why hadn't I felt this the day before in my bra? Did this just pop out of nowhere? I panicked, and showed my husband. I started to cry that I did not want to die. We were leaving in 48 hours to LA. How could I go with this lump on my breast? I called my doctor the next morning and booked an appointment for when I got home. I found my lump on April 5th. My late Zeidi Mike's birthday.
The day I saw my GP she felt the lump, and sent me to a private clinic. She wasn't overly concerned and thought that it could be some scar tissue from the breast reduction I had a year earlier. I went with my daughter the next day to Charlevoix for dance, and then had the appointment with the private clinic upon my return.
Going to the private clinic, I was nervous but decided to go alone. "It CAN'T be cancer," I thought. I was in the best shape of my life. My friend was in Florida, celebrating with her family the end of her cancer treatment. I was texting with her and she told me to insist on a biopsy, even if they say that I didn't need one. I got called into my appointment and the doctor started the ultrasound. We were chatting and he stopped. He took a breath. "There's something there...." he said. Jokingly I responded, "Of course there is something there. That's why I am here!" "No...." he continued. "There's something THERE." I asked him if I was getting a biopsy. He said that he was not letting me go without one. He showed me the blood flow in my growth. I knew what blood flow meant. I went numb. I was alone in this clinic, and was about to have a biopsy on what appeared to be a cancerous lump. A nurse came to hold my hand. I cried. The doctor took two biopsies with a tool that looked like I was getting my ears pierced. I was told that they will call me in 72 hours with the results.
The next few days were hell. I didn't eat, I didn't sleep, and I couldn't function. I stayed in bed and cried. 72 hours like clockwork, I got the call. I remember him saying something about it being aggressive and fast growing. I asked him if I would live to see my kids grow up and my daughter get married. He said that the doctors would do everything in their power. My kids were 3 and 6. They were babies. My diagnosis came on April 28th. It was my husband's late Zeidi Harry's birthday.
The next few days were filled with doctors appointments and tests. I met my oncological surgeon, and my oncologist. They were confident that this will just be a blip in the road. They were confident that we can beat this monster.
Chemo started May 16, 2016. I would have 16 rounds of treatment, followed by surgery. Chemotherapy was hell for me. I had a mild reaction to my first Taxol, so the following ones had to be a slower drip. When I moved onto AC, I had an allergic reaction to it that almost took my life. I powered through the best of my ability. My kids were suffering. I would not leave them without a mother.
October 18 will be 4 years since I finished chemotherapy. My double mastectomy was 6 weeks later. Though several more surgeries would follow, we consider my date of remission to be the date of my double mastectomy.
There are days where I think back to it and it seems like a different life. I cannot believe I had cancer, and I cannot wrap my head around the fact that my babies had to experience this. I attended one cousin's wedding over ZOOM. For the other cousin's wedding my mother in law cooked for me so that I could be comfortable that the food was cooked according to my chemo rules. My best friends got married and I was in a wig and had to sit down before walking down the aisle. For years I was a volunteer medic for the Weekend to End Breast Cancer. In 2016 I was walking for myself. I HAD Breast Cancer. I cannot look at an IV drip without tasting the metallic chemo and getting nauseous in the pit of my stomach. I am tired, my body hurts ALL the time, and only in the past few months have I been able to lose some of the weight I put on. However rough my road has been, whatever the after effects may be, it doesn't matter. What matters is that...…
LONG STORY SHORT, I SURVIVED.
OCTOBER IS BREAST CANCER AWARENESS MONTH
October is Breast Cancer Awareness Month, so today’s monthly reminder will focus on breasts. Breast Cancer is especially close to my heart, as I was diagnosed in 2016 with Triple Negative Breast Cancer. Stay tuned for our next newsletter on October 15th as I go into detail about my own story.
While the symbol for this month is full of flowers and pink ribbons, breast cancer is anything but pink. One in eight women will be diagnosed with breast cancer in her lifetime, and one in 33 will die from it. Breast cancer does not discriminate – it affects young and old, women and men. Early detection is your best chance of survival, so knowing your body, and knowing what to look for is vital.
Begin by looking at your breasts in the mirror with your shoulders straight and your arms on your hips. Are your breast their usual size and shape? Is there any visible dimpling, puckering, or a rash? Has your nipple inverted? Do you see any signs of fluid coming out of one or both nipples?
Raise your arms up and look for the same changes.
Next, feel your breasts while lying down, using your right hand to feel your left breast and then your left hand to feel your right breast. Use a firm, smooth touch with your finger tips, keeping the fingers flat and together. Use a circular motion, about the size of a quarter.
Cover the entire breast from top to bottom, side to side — don't forget your armpits! You can begin at the nipple, moving in larger and larger circles until you reach the outer edge of the breast. You can also move your fingers up and down vertically, in rows, as if you were mowing a lawn.
Finally, feel your breasts while you are standing or sitting. Many women find that the easiest way to feel their breasts is when their skin is wet and slippery, so they like to do this step in the shower. Cover your entire breast, using the same hand movements described above.
What to do if you find a lump
There are several possible causes of non-cancerous breast lumps, so breathe. A lump doesn't automatically mean cancer.
Call your doctor. If you are near your period you may want to wait to see if it is due to hormonal changes and if it goes away. If you do make an appointment, go to the doctor who knows your breasts and has done your exam before. They can then guide you on your next step.
It is important to not ignore the changes in your breasts. Early detection saves lives. Do your breast exam today, and if you have any questions please do not hesitate to reach out or to contact your doctor.
Speaking about cancer can be both confusing and terrifying, so we rounded up some "must have" books for any age and any situation. These books can be found at Chapters Indigo, or on Amazon.
Parent with young children:
Are you someone who has been touched by cancer, or even someone looking for an empowering, motivating, and inspiring story? Read SOUL SHAKER: A Whirlwind Awakening, by Catherine Kontos. Catherine was struggling in an unhappy marriage and personal cross-roads when she was diagnosed with breast cancer. Her story is one that starts with great pain, loneliness, and suffering but concludes with health, strength, and power. This book is a "must" on your reading list.
Do you have any books that has helped you or your family? Let us know!
For the month of OCTOBER, Joyful Packages is proud to be donating 15$ of all sales to CURE Foundation!
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