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!
Support the cause !
We pride our self on providing a care package for everyone surrounded by cancer - be it the patient, the survivor, or the caregiver. Now we have included an accessory line as well! Headbands for adults and children, as well as head scarfs can be found in our shop.
Local pick up or shipping is available.
Check out our accessories today!
Imagine your child being sick. Imagine being told your child has cancer. I know... its impossible to imagine what it feels like. It is something that none of us want to imagine. For the White family however, they were told their precious 5 year old daughter Ellie had AML - Acute Myeloid Leukemia.
Ellie fought hard and completed her treatment like a star. The family was able to breathe again. Except, a few months later it came back. Ellie's world was pushed back into cancer, and they needed to find a bone marrow transplant. The SWAB FOR ELLIE campaign was incredible, and not only did Ellie find a match, but so did a few others who were looking. Ellie's swab drives not only saved her life, but others as well! It was incredible how many people came out to get swabbed to help Ellie.
Bone marrow transplant complete, Ellie again came home. We all smiled and enjoyed seeing pictures of Ellie being a kid and going to camp.
Ellie started grade 2 - YAY! Only for her fabulous day to be clouded over by cancer - AGAIN.
Ellie unfortunately started treatment AGAIN and is thankfully in remission - for a third time. But now, we need to help CURE Ellie. We need to help Ellie so that she can start grade 3 with her friends next year. We need to help Ellie so she can graduate elementary school, high school, and university. We need to help Ellie experience her first kiss and her first heartbreak. We need to help Ellie experience a long and healthy life
Ellie and her family are moving THIS WEEK to Ohio which is where they found an experimental treatment. She needs a transplant that is only available there.
A GoFundMe account was started for Ellie. EVERY DONATION WILL HELP. Her treatments are NOT covered and her family needs to pick up their life and move to the USA to save their baby's life.
Have only $5 to spare? That's good enough! EVERY DOLLAR COUNTS.
Ellie's GOFUNDME page is https://www.gofundme.com/f/fightforellie
PLEASE PLEASE PLEASE, I am begging you. ONE Starbucks coffee is all I am asking you to give up.
HELP SAVE ELLIE'S LIFE.
Almost a year ago, Joyful Packages Warrior of the Month was Shani, a beautiful 16 year old girl with Osteosarcoma. Her answers to our questions were honest, raw, yet made us smile at the same time.
Unfortunately, On August 28th 2019 - a month shy of her 17th birthday, Shani passed away.
Boxes will be donated throughout the month of September to the Montreal Children's hospital in Shani's name. As I write this post, we are already scheduling a first drop-off of over fifteen boxes, and will be doing a second drop off at the end of the month.. all in Shani's name and memory.
Shani may have left us, but her memory and her zest for life will remain forever.
Here is a blog post that Joy wrote after treatment finished, all about the "WHAT'S NEXT"
When people ask me how I am feeling, it is usually accompanied by a “so what’s next?”
When I was first diagnosed I had every test in the book (CT scan, MUGA scan – love that word, ultrasounds, etc.), followed by 6 months of chemo, then a bilateral mastectomy and reconstruction. After that was another breast surgery 6 months later, and a hysterectomy. I now have “No Evidence of Disease” or am considered “in remission” until I hit that five-year mark of being cancer free. So I am kind of in limbo. I am still very much in my cancer world, while still being able to move on with my life. So what’s next?
I currently see my oncologist every 3-4 months. This to a certain extent terrifies me. I am happy that I do not need to see him every 2-3 weeks because that means that I’m healthy (or so my mother in law tells me when I tell her I don’t need to see him for 3 months and it makes me nervous), but it terrifies me. The oncology department gives me a sense of calm. I see my plastic surgeon every six months for now, but after my next appointment in a few weeks I suspect that I won’t need to again so soon, unless we decide to do one more tweak. I see my oncological surgeon once a year (since my boobs are all silicone anyways, it’s close to impossible to get another lump in my breast). Finally, I see my gynecologist as needed (isn’t menopause great?). I am still doing tests every few months to make sure everything is staying as it should.
This month I have had the privilege of being invited to two Breast Cancer events. I took part recently in a fashion show for an amazing organization that raises money for breast cancer. I got to have my makeup done and wear a stunning gown. I felt like a princess. I also was asked to do a modelling shoot for an incredible clothing company. They pampered me and prepared a whole story board for my shoot. Is this what fancy celebrities feel like? I did a video for them last year while I was still in chemo, and this year they celebrated me as a survivor.
So what’s next? Well, I get to live my life. I am back at work full time and am enjoying every second. I am back in dance mom mode, as my daughter is not only competing with her team this year, but will be competing as a solo as well. As my hair is growing, I am discovering new hairstyles that I can do. And lastly, I am preparing for a very exciting event in January – my mastectomy tattoo that an incredibly generous and talented tattoo artist has gifted me with. So I am still in my cancer world, while also being in my “normal world”. I am enjoying life, but also enjoying the comfort of seeing my brilliant oncologist. I am learning how to be “me” again.