Anatomy of a Scar: A Reflection

Scars. They reflect the roadmap of our lives. No matter if they are beautiful or ugly….they’re ours. Meaningful and sometimes tragic reminders of the battles fought, lives produced and everything in between. I have nearly 30 individual scars on my one body – sixteen of them acquired only at 2 weeks of age when, as an infant, I fought a raging staph infection that nearly took my life before it even began. 

Sixteen reminders of my survival. Not pretty, just real. Real in every sense…my body was attacked, my body fought back, and now I have the proof, spread across my backside. Not in any particularly organized pattern, just scattered scars where small tubes were inserted to let the infection ooze out of the infected flesh. 

At two weeks of age, and living in the former communist country of Moldova, under Soviet rule at the time, medicine was socialized. What that meant is that unless your job was to produce something…a newspaper, a street sign, a widget of sorts, you did not get paid well in your profession. Doctors were criminally underpaid and under-valued and therefore often underperformed, as a result. Bribes for better treatment were the norm, so patients often came to hospitals armed with an added incentive for the doctor that was to treat them…cash or bottles of booze were commonly presented to doctors at medical appointments.

According to my parents, the story goes something like this. When I was a few weeks old, I had a little sore on my lower back. When the visiting nurse came to our home, she punctured the small blister and gave me an even bigger infection that caused my fever to skyrocket. An ambulance was called and I was rushed to the hospital where they discovered an aggressive staph infection ravaging its way through my body. 

During the two weeks I spent in the hospital, my condition. After the bribes stopped working and doctor visits to my hospital room slowed down, my parents were told that they should go home. That they should leave me in the hospital…that I was not going to make it through the next night. That’s when my father flipped a switch, stormed a medical conference taking place in my hospital, and dragged out 3 doctors who would end up saving my life. To my good fortune, my father was strong-willed, but so much so that my official medical record had this note in it, “Be careful! The father has a bad temper.”  So I survived, and eventually my mother and father brought me (and my sixteen little scars) home and then a few years later to a new beginning in America. 

Throughout my life, those scars were always with me. Something I had to explain to friends at cheerleading camps when changing into our uniforms…Something I had to clarify when asked why I preferred high-waisted bikinis rather than the skimpy ones everyone was wearing in the ‘90s. Something I had to acknowledge in my intimate relationships as well. But they were a part of me…I did not know life without them. 

When I was in my early thirties, I was diagnosed with advanced breast cancer, and genetic testing showed that I carried a mutation that would, more than likely, cause my cancer to return in my lifetime. Stage III, triple negative breast cancer with the BRCA 1 mutation. I hit the jackpot – the most aggressive breast cancer was playing house in my body. Hard situations sometimes require even harder measures. So we went ballistic…our counterattack included dose-dense chemotherapy and full-course radiation as well as a double radical mastectomy. Taking the most aggressive measures available was hopefully going to also increase the chances of long-term survival. It was touch-and-go in those dark days and big decisions needed to be made quickly. We weren’t trying to save my breasts…we were trying to save my life. 

At that time, the nipple-sparing procedure was not an option for me, so off everything went. I closed my eyes and surrendered to some of the most capable hands in New York City. Because of the location of my cancer, the surgeons had to scrape down to my chest wall in order to make sure they got rid of every microcell and cancerous fiber. They needed to clean house! And they did just that, leaving a warzone of annihilation and destruction across my chest.

The scars were severe and, while expected, were still difficult to adjust to. It was gruesome. The surgery and the scars hurt more mentally and emotionally than physically. And not because of vanity. But because they were reminders that, if it were not for modern medicine, I would not be alive…that in order to live, I had to virtually amputate a part of my body. Reminders that I was somehow damaged, less than, unwhole, weak.

As opposed to the scars left on my back from my infant staph infection, these new scars were on my chest. Everytime I looked in the mirror I was reminded of my dance with death and how I was forced to deal with my mortality. I could not run away. I could not even turn away. Every shower, every changing of clothes, there they were…in my face, wickedly staring at me – permanent reminders of my own personal defectiveness. And worse, I could not unsee the horrific expressions on the faces of my family and my dearest friends…stepping forward to change my bandages and empty my drains, meeting my scars for the first time. It was as if they were seeing a nightmare unfold in real time. They couldn’t hide their shock, and seeing the pain on their faces was worse than the physical pain I was feeling. 

The anguish of loss was present and I was reliving my cancer each day. Every day. How can you put something behind you when it’s staring you in the face? The anatomy of my scars became more than physical tissue being rebuilt…it was the revolving thoughts racing through my mind and in my heart and in my core. 

They say time heals all wounds. But the scars…those remain. Two years after my cancer and after countless reconstructive surgeries, the scars were still there…red and angry. My emotional state was resignation and concession. I was resigned to living with the collateral damage the cancer treatment left. Weakened nails, brittle teeth, lymphedema in my arms, those treacherous scars on my chest and the visceral scars on my psyche. But the one thing that I could not bear was the infertility caused by the chemotherapy. That left me reeling. 

And then a miracle happened.

After a spiritual trip abroad with my husband, I realized that I was pregnant. Spontaneously pregnant, against all medical odds and probabilities. And not only that, I was pregnant with twins, if you  can imagine. For the first and only time in my life, I was pregnant, and let me tell you, it was the most wondrous experience. I finally felt that I was doing something important, something bigger than me and much bigger than my cancer and that initiated my emotional healing process. 

After nearly dying from cancer, to have the ability to grow new life was just miraculous, in every sense of the word. My mental scars began to take the back seat and fade against the possibility of bringing life into the world. Something I was told would never happen.  My physical scars were suddenly no match for my growing belly. Now when I looked in the mirror, I was in awe of my own body…what it went through and what it was able to do in spite of the destruction it had endured. 

And when the doctors told me that I would need a c-section and I thought about adding yet another scar, I was proud to do just that. Because I slowly began to realize that every scar and imperfection was fought for and earnestly EARNED. And that my scars were my badges of survival…reminders of the moments and experiences of achievement…something to honor and take pride in. 

The Japanese art of Kintsugi, where objects are shattered but then reassembled, the cracks painted in gold, teaches that broken things are not something to hide but instead to display with pride and dignity. The scars, my scars, your scars, they all tell an intricate, authentic story of the beauty, grit, and strength in the broken places. And we all have broken places, visible or not. In spite of everything, you are not only whole, you are bold and gold in the cracks that once were. They are yours….you earned them, just like I did. 

My favorite scar is my c-section scar because it lives as a precious souvenir of the two remarkable lives I created. It’s also one of my smallest scars, and I actually sometimes secretly wish that it was bigger because of the enormous story that it tells. My story. And now, I would love to hear yours!

If you have a scar story you would like to share, please click HERE

Anatomy of a Scar: A Reflection2022-10-11T21:43:26+00:00

The Girlfriend’s Guide to Breast Cancer, Chapter 1: The Moral Is…

Girlfriends and Boyfriends, Let’s talk about breasts!

Bosoms, boobs, breasts, chest. We all have them…in one form or another. For some, they are nothing more than a body appendage we were born with. While for others, they are a vital part of our femininity or masculinity, an identifying factor of our emotional identity and sexuality. And still for some, they serve the most primal purpose of all…that of feeding our children. Or, really, could be all of the above!

Yet for 1 in 8 women and 1 in 800 men, our breasts are also ticking timebombs – and I was one of them…one of you. 

In my early 30s, without notice or warning or even so much as a minor gut feeling, I found myself in the throes of advanced and clinically aggressive breast cancer. BOOM! It hit me like a freight train that didn’t even try to slow down at the station. I quickly found myself fighting for survival while also trying to navigate through my new daily reality of lab work, infusions, needles, nurses, big words, bigger decisions. Wash, rinse, repeat.

In my case, the cancer didn’t hurt. I found it strange to be so close to death but feel no pain. I actually didn’t feel a thing. But going through the chemo, the surgeries, the radiation and the countless scans and procedures, presented other challenges. So in the spirit of sharing and caring, here are a few insights and thought-starters…from your girlfriend, who’s been there.

Insight #1: Girlfriend, a bad-hair day is better than a no-hair day!

For some women, thinking about losing their hair is even worse than losing their breasts. I get it. On top of feeling sick from the cancer drugs, your hair starts to abandon you as well. When chunks of my hair started to find their way onto the floor and the kitchen table, I shaved my head in the garage. It was both tragically sad and empowering all at once. But I felt strong…like GI Jane. It was an act I did FOR myself and not TO myself. It was something that I did to prepare myself for war!

Not everyone loses their hair from chemo. However, if you need to, picking a wig can be a delicate matter. You may want to choose a wig or a fall that resembles your natural hair color and style. Or you may want to just go bananas and try out fun options and colors. 

In my case, I had one great quality wig and then six or seven more just for fun. Each had her own name and persona, and I felt like I could escape into a new realm based on the wig I was wearing that day and the story I wanted to live in at that moment. 

My wigs ranged from long and dark (“Erica”) to short platinum blonde (“Francesca”) to strawberry pixie (“Jane”) to a black severe bob (think “Mia” from Pulp Fiction) and everything in between. There was a “Samantha,” a “Carrie,” a “Charlotte” and a “Miranda. Yes, my Sex And the City friends, you read that right!  With so few decisions we cancer patients have, choosing my wig each day gave me back a sliver of my own liberty and independence. 

Francesca was the sophisticated wig who joined me in the city for dinners with friends. She liked fine food and dirty martinis. She looked like a wig and therefore required a lot of confidence to pull off. Francesca was saved for the good nights when I had strength. I felt most like myself in Erica, but since I really didn’t feel much like myself most of the time, she made limited appearances. Erica was really just reserved for special occasions or dates with my husband. Mia came out when I was feeling extra sassy and often had a dark, morbid sense of humor.  But in the moments when energy escaped me and I was in recovery mode, a soft cashmere hat was my go-to. When I felt up to it, the wigs were an escape…chance to be creative and have a little fun when my body and mind and spirit aligned. 

The Moral Is: Fake hair, don’t care! Just make sure it’s on straight.

—————–

Insight #2: Girlfriend, having chemo does not mean that you will be hugging your toilet!

Vomiting sucks! After one outrageously indulgent night of college partying during my freshman year, which almost landed me in the emergency room and the university’s security office (not in that order), I decided that I would NEVER vomit again. My brain was seared with the debaucherous memories from that humiliating night, and I was determined to keep my word.

So, you can imagine the horror racing through my mind when I realized that I would likely experience severe nausea and vomiting from the dose-dense chemotherapy drugs I would be taking. I discussed my concerns (more like nightmare scenarios) with my oncologist, my nurses, the finance lady, the front desk secretaries, and the parking attendant. Anyone and everyone who encountered me at NYU knew my irrational fears about vomiting and kindly humored me by hearing me out each and every time I started to rant.

Luckily my oncologist took me seriously and prescribed anti-nausea medications before and after each chemotherapy infusion. My neurosis aside, apparently most cancer patients get these medications to minimize side effects. I was nothing special. But I am very happy to report that, to my great relief and even greater relief of my friends and family, I did not feel nauseous or vomit even once during my four months of chemotherapy. Not even once!

The Moral Is: A puke bucket also doubles nicely as a fruit bowl.

—————–

Insight #3: Girlfriend, breast cancer isn’t funny, but laughter is the BEST medicine!

I discovered that having a sense of humor about life’s challenges is an effective coping technique. 

As my cancer treatment progressed, I found humor in morbid things and moments that could seem macabre or dark to others. Like that time a teenage kid asked me in Costco about “the weird pipe” attached to my arm (my PICC line). Without missing a beat, I looked him, dead in the face, and sternly replied. “It’s for chemotherapy. I have CANCER.” His mother looked at me like I just shattered his innocence, and dragged him away without another word spoken. “Well, shithead,” I thought to myself, “…next time think twice about what you ask a stranger.” I was howling inside. So satisfied with my quick reaction. Probably not appropriate.

Or the time that I reached out to mindlessly touch the needle of the infusion syringe  – only to meet the earth-shattering screams from my oncology nurse, Peggy. “DONNNNN’T touch thaaaaat!” She yelled so loud that other nurses burst into my room and the friends sitting next to me looked as if they had been shot out of a cannon. When we all caught our breath, Peggy explained that the chemotherapy drugs were so toxic that one drop would literally slough the skin and flesh from my finger. Yes, she used the word “slough.” What in the mighty hell!?! “So, you’re pumping me with this poison for hours each time, but if I touch it for even one second, my flesh will melt away,” I asked Peggy in all sincerity. “Exactly!” was her response. After one beat of dead silence, the entire room erupted in laughter and disbelief. This time we howled out loud and while there was nothing funny about the situation, the absurdity of the moment was absolutely hilarious. Again, not appropriate.

Or the one time my very handsome, very successful friend, Steve, surprised me with a visit to the hospital room during an infusion. He grabbed the bedpan sitting next to me and looked at it quizzically. The room fell silent and all my girlfriends held their breath. Then he slowly looked up at me and I wanted to die from embarrassment when his gaze met mine. Because this was my college friend Steve who knew me when I was in my prime, in my glory…my friend Steve who I had shared years of laughs and crazy good times with…now looking at me, bald and sick, in the chemo ward, and holding my bedpan! The moment of tension was suddenly broken when he blurted out, “Hey, can I wear this thing as a sombrero?” Oh, we roared with laughter so loudly that I forgot my own situation for a minute and instinctively shushed everyone in the room, “Hey guys,” I said, “…we need to be a little quieter, there are sick people in here.” And then reality set back in. Still, not exactly appropriate behavior.

 

The Moral Is: Laugh often, hard and loud, especially when it’s most inappropriate!

—————–

Insight #4: Girlfriend, go to sleep with your make-up on, if you need to!

 

Rest is your friend when you are sick. When you are going through any part of cancer treatment, rest is your best friend, your boyfriend, your sister, your mother, your emotional support animal and everything in between. 

I am not a natural “rest-er.” Resting is actually exhausting for me. I’m the person who prefers to have too much to do than not enough…to be traipsing through an exciting new city rather than sitting on a beach. The state of relaxation is a foreign concept for me, and always has been. I was brought up to think that “I’ll rest when I die, but today, there is much to be done.” So my house is always organized, the laundry is always done, there are no dishes in the sink overnight. Make-up is off before bed, teeth are brushed, counters are clean and the plants are watered. I like to go to bed exhausted and feeling that I have accomplished many things.

During my cancer treatment, I was sometimes forced into a state of rest. I remember fighting a copious amount of Benadryl to stay awake so that I wouldn’t miss any part of a juicy story that my girlfriends were sharing. I recall being so hazy from the drugs that I couldn’t walk a straight line while out for a walk. Or too tired to eat my mom’s famous potato dumplings.  

I remember when my two best friends from Virginia drove up to spend a little time with me that I passed out in the bed after we went shopping. And when I tried to get up to take off my wig and make-up, they wouldn’t let me. They sat with me in bed and gave me permission to just…fall…asleep. It was the first time in all my adult years that I did not wash my face before bed. And THAT, I realized, was absolutely OK! The sun still rose…the world kept turning, and it was ok to just let go.

Gradually, I have learned that replenishment comes through rest, quiet and calmness. Stillness is sometimes necessary and waking up refreshed is a gift. That in order to be your strongest self, you need to be well-rested and well-watered (more than your plants), mind, body and soul.

The Moral Is: If the cancer tries to bury you, let it know that you’re a seed.

 

Thanks for reading, Girlfriend, and please share with your other girlfriends and boyfriends too!

And if you want to pen insights from your own cancer journey, click HERE. We’d love to hear from you!

 

Until next time,

-Your Girlfriend

The Girlfriend’s Guide to Breast Cancer, Chapter 1: The Moral Is…2022-10-11T21:44:08+00:00

A Bella Tale, My Cancer Story of Hope.

Shortly after my cancer diagnosis, I began to receive good-hearted advice from my family and friends. They all wanted me to join a cancer support group. Why? Because my crew did not think they were able or qualified to support me like other cancer patients could.  After all, how many 32 year-olds do you know with Stage III breast cancer? 

For me, I knew it was critical to stay true to myself and that my strength came from the vibrant, colorful, energetic things and people in my life. So at each chemotherapy session, I would sit with friends, who traveled from as far as Amsterdam, and took time from their busy schedules, to join me at the NYU Cancer Institute for hours of infusion, cupcakes, funny stories, dirty jokes, dirtier magazines, champagne and lots of laughs. We would laugh so hard and so loud that one time I remember saying, “Guys, we have to be a little quieter…there are sick people here.” Honestly, it was only when they stopped laughing and looked at me that I realized that I was one of those sick people. 

 The guilt I felt watching their faces crumble as they hugged me – it was intense and sometimes more than I could handle. And in the sparse, quiet moments I secretly wondered if they all came to say their good-byes. I felt awful watching my friends and family stand witness as I fought the good fight. To me, I was taking them down a dark and irreversible road which would forever mark them and strip them of their innocence. The emotional weight of being a cancer patient can take you in so many directions…fear, sadness, anger, self-pity….mine was mostly guilt and well, maybe, some good ole-fashioned anger, peppered in for good measure.

 So how did I get here? After all, I was young (only 32), fit, strong, newly married, at the height of my career and planning to start a family.  The simple truth is that I took my dog, Bella, for a walk one beautiful summer day and came home with breast cancer. Yes, you read that right.

 I was walking my dog and the next thing I knew, I was flying through the air. Bella gave me one strong, sudden tug on my left arm that surprised me and jerked me forward and off the ground, dislodging an avocado-sized tumor from my armpit in the process. The tumor was a lymph node engorged with metastatic cancer. No lumps or bumps on the breast…only a tiny spec at the very base of the chest wall that silently and aggressively ravaged its way through my body. And that enormous lymph node had been working overtime, doing its damndest trying to prevent the cancer cells from spilling over into other organs. By luck, by miracle, that walk with Bella saved my life because, according to my doctors, we would have not been able to find this in time or in any other way. After all, I was too young to even go for a mammogram.

Being diagnosed with Stage III, Triple Negative Metastatic Breast Cancer, at my age and with no family history, the doctors kept saying it was a “remarkable” case. I’ve never wanted to be more unremarkable in my life. I was thrust into dose-dense chemotherapy a few days after diagnosis and told that the chemo would likely kill my chances of ever having children, could cause other cancers or even heart failure…but I did not have even one day to waste, let alone the two weeks I needed to preserve my fertility.  It was my only fighting chance at survival, or so they said. I was led to believe that there  were no other options for me so late in the game. So I quit my shiny new job, said a prayer that my fertility would remain in tact, and assumed my new role as CEO of Cancer Treatment. 

The ironic thing is…the cancer didn’t hurt. It was the treatments that I suffered from! And it was a grueling experience. Dose-dense chemo is not for the faint of heart. The chemical agents I received, also known as “Red Devil,” were the same used in the mustard gas for extermination in WWII. It can cause cardiotoxicity (heart failure) and should typically be administered once every 3-4 weeks. Mine was administered once every 2 weeks for maximum impact. So, in essence, what my doctors attempted to do was bring me to the brink of death without actually pushing me over that slippery edge. Giving me a little time to recover and then blasting me again. It was all grit and white knuckling mixed in with inappropriate jokes at even more inappropriate moments that carried me through those days.

During the four months of chemo, I also went through genetic testing and found out that I carried the BRCA 1 gene mutation, which all but promised a nearly 90% return of my particular cancer in my lifetime. Doing that genetic test changed the trajectory of my treatment. Very quickly, my medical team switched gears from previously discussing a minor lumpectomy to now recommending a double radical mastectomy where they would actually scrape down to the chest wall. And that is what I did, with great difficulty. Not because of vanity. But because I would forever have these scars, reminders of my fragility. Reminders that if it were not for modern medicine, that I did not qualify for Darwin’s survival of the fittest theory. I thought the scars would make me feel broken, amputated…frankenstein-ish. 

I finished chemotherapy on December 9, 2005 and on January 11, 2006 I closed my eyes and surrendered to the surgeons for the most aggressive mastectomy they had to offer. Six weeks of daily radiation, that tagged my left lung and heart, followed.

To my devastation, I was left in full-blown menopause from the treatment and really twisted up about it. In general, my outlook on my cancer was positive. I understood that although I got hit by the proverbial bus, that all my lucky stars had to align for my dog to find my cancer. I could deal with anything, but infertility? No! I did not sign up for that!  Knowing how much we wanted a child, my oncologist said that he would sign all the adoption papers we needed but that I had to wait at least three years to make sure that cancer did not return. So after much discussion and anguish, we decided that we had no choice other than to wait…but determined that we would become parents one day – regardless of how a child came to us.

Less than two years later and still struggling with infertility, I shockingly discovered that I was spontaneously pregnant…for the first time, and only time, in my life. My stunned and concerned oncologist told us that I was not far enough away from the cancer to even consider this pregnancy. He said that if we wanted to do the right thing for my health, we would terminate.

What? Terminate the pregnancy? Um no, I’m not the one. For me there was only one clear option! There was no way I would ever consider stripping myself of this unbelievable gift, this miracle, this baby that found its way into our life against incomprehensible odds. 

At the baby ultrasound, the technician found the baby’s heartbeat. Her words still dance in my mind, “There’s the heartbeat… and there’s the other one. You have two babies!” Twins! Time stopped and my life changed in an instant. It was the most defining moment of my life. Both girls’ names are inspired by my cancer journey.  They leap from on my tongue as reminders of both hope and gratitude.

And my skeptical oncologist? He said that I was the first patient in his entire career that was able to conceive a child, let alone two, after the kind of treatment I received. He came to my hospital room when the girls were born to hold them and see that life actually exists on the other side of cancer. I’m happy to report that there have been other pregnancies since mine at NYU!  What I’ve come to realize is that no matter how well-meaning they are, doctors simply cannot not know everything and cannot be expected to. 

The scars I thought would haunt me? They turned into the most beautiful reminders of my grit and good fortune. I feel like a Japanese vase that has been cracked but then quickly reassembled. The cracks, painted in gold, are meant to  tell a story of beauty and strength in the broken places. And that’s what I have become – strong in the broken places, in every way!  

I tell my story to say that miracles are possible, that you should trust your instincts, that you should question everything…and that you should never give up on hope or on yourself – ever!  We lost my Bella many years ago but every time I pass the spot where she pulled my arm that day, I look up into the sky to thank HER and the universe of endless possibilities. And when I look into the eyes of my daughters, I think of hope everlasting and the perseverance of the human spirit. Nothing is impossible.

A Bella Tale, My Cancer Story of Hope.2022-06-16T16:16:57+00:00

The Empowered Family: Cari’s Story

“And that’s where the cancer is….”.  These six simple words, said so cavalier, tore my world apart and my life hasn’t been the same since they were uttered two years ago.  It was July 2020 and I was laying in a darkened room while a doctor examined mysterious subcutaneous bumps via ultrasound.  I felt my face flush and my lips and fingers began to tingle.  The doctor went on to show me two large masses and an abnormal lymph node.  I’m not really sure what he said next… my mind was a whirlwind of thoughts, but mostly I thought… why? And better yet, how?? I had had a mammogram and ultrasound six months prior and there was nary a shadow let alone a large 7cm mass yet here I was not even a year later with what everyone was one hundred percent sure it was a malignant tumor.  

I left the imaging place with instructions to return the next day to get a biopsy as soon as possible.  I sat in my car and cried.  I came home and hugged my two little boys who were 8 and 2 at the time and imagined how their lives would turn out if they grew up without a mama. How was it possible just the day before I was worrying about my statistics final??  

The next few weeks would be a whirlwind of appointments and imaging. New faces, needles, and pokes and prodding. I would discover my cancer was invasive ductal carcinoma, HER2+, Estrogen positive.  Unfortunately I would also learn that I not only had affected lymphnodes but two teeny tiny spots of cancer on my liver. I was officially upgraded to a stage 4 patient.  I was devastated to realize I would never be cured. The most I could hope for would be long remission.  

Less than three weeks later I was hooked up and ready for my first infusion, a deadly cocktail of Docetaxol, Carboplatin, herceptin and perjeta. I underwent 16weeks of the poison that was supposed to “fix me.” During this time I continued to work and go to college.  I’d conduct speech therapy sessions from the infusion room. My oncologist managed my side effects well, but nothing could be done about the hair loss. That’s when my sister and my niece decided to take control and shave my head.  

During the workup at one of the many appointments, my surgeon, an amazingly kind and gentle soul, Dr. Rebecca Viscusi offered genetic testing since I was so young and otherwise in fantastic health.  I agreed to do the genetic panel not expecting much of anything to come back but wanting to know if maybe getting cancer wasn’t my fault.  My genetic results came back as having a germline mutation in the P53 gene, a condition referred to as Li Fraumeni Syndrome.  This gene is a tumor suppressor and ensures your body does not allow unhealthy cells to complete the mitotic cycle.  In my case, my P53 genes don’t work right so my  body allows damaged cells to reproduce.  Women with P53 mutations have a 99% chance of developing cancer in their lifetime because of the already elevated risk of developing breast cancer.  

So there I was… full of disease and also defective in some way.  My first instinct was to check my kids.  My geneticist, Rachel Adger, worked with my childrens’ pediatrician to get them tested.  It was a 50/50 chance either way for both of them.  Unfortunately my youngest son, who was 3 by this time, inherited the genetic mutation from me, but that is another story.

During my first PET scan, my medical oncologist, Dr. Aisha Ahmed, noticed a spot in my brain she was certain was not a metastasis of the breast cancer, but wasn’t sure what it was in general.  Now that we knew I had LFS, any abnormality had to be taken seriously and she referred me to a neurosurgeon.  Right away I clashed with the doctor and his staff.  I will not mention his name, but I was not well taken care of, I was not treated with respect, and I was not taken seriously.  It was at this point I decided to request a referral to Mayo Clinic and get a second opinion.  I had the pleasure of working with an amazing surgeon by the name of Bernard Bendok.  After numerous MRIs, a functional MRI, and a perfusion MRI we still weren’t sure what the mass was. It had not changed, but again, being the genetic anomaly I am, Dr. Bendok and I erred on the side of caution and decided to remove it and have it biopsied.  

The pathology came back as a grade 3 astrocytoma that would require chemotherapy (a shortened and lower dose because I’m already at risk for leukemia) and proton therapy (not radiation because radiation is dangerous for people like me!) my insurance did not want to pay for.  I did the proton therapy at Mayo Clinic with Dr. Terence Sio and his amazing team. The social workers and techs became not just part of my care team, but also friends.  We listened to music together, we talked about our kids, and on my last day of treatment, we celebrated together.  After the proton therapy I underwent 6 months of oral chemotherapy and as of March 2022 I am officially on maintenance therapy and surveillance.  

During this entire time I have managed to continue working mostly full time, take care of my kids, graduate from college and get accepted into a master’s program. I wouldn’t say I’ve quite adapted to life as a chronic cancer patient but I have definitely accepted it.  My infusion nurses are some of the best friends I have.  As a “lifer” patient, we’ve gotten to know each other and by association, each other’s families.  I have met amazing people during this experience: social workers, advocates, patients, doctors.  Sometimes I still get a little discouraged or bummed out, knowing I will never put this behind me. Knowing that every single thing in my life has to revolve around a treatment regimen. Knowing that I will never sign the wall or ring the bell signaling the last chemotherapy treatment.  But I have also realized the physical weight of this is heavy enough, I don’t need to add any mental weight to it.  

I have also learned that it is so beyond important to not only trust who is in your corner or on your care team, but make sure they can and will advocate for you as needed.  If you don’t have a doctor willing to do that, it’s a giant red flag.  If that first neurosurgeon was the be-all end all opinion, I’d be dead right now.  That leads me to the second thing I’ve learned:

I have learned that you must also advocate for yourself.  Information is readily available to us by a simple click of the button.  Be informed and be knowledgeable.  You are the only one that has to live with the decisions made about your treatment. 

I could give you a lot of crap about how I learned to appreciate the little things, and to cherish the “small moments” but let’s be real: that lasted about a month.  That in itself was refreshing..it reminded me that no matter what my diagnosis was, I was still me.

I get nervous and unbearable anxiety when I have imaging or blood draws. The slightest jump in numbers sends me into a tailspin, and it will most likely be that way forever.  I’m not saying that to make you feel bad, but to remind you that it’s ok to be scared but it’s not ok to let it consume you.  

The Empowered Family: Cari’s Story2022-05-23T15:06:27+00:00

When the Doctor Becomes the Patient

How Cancer Changed the Way One Doctor 

Practices Medicine 

Trialjectory had the privilege of speaking with Dr. David Jones* about how his experience as a cancer patient changed the way he practices medicine. 

 

Trialjectory:  Thank you for agreeing to share your story.  Can we start by having you share a little bit about your background? 

 

Dr. D:  I am from a lower middle class family from a mill town in the North East. I attended public schools and was the first in my family to attend college. I have always enjoyed science and decided at a fairly young age to try and become a doctor. My late wife was instrumental in my finishing school. If it was not for her great help and support I probably would not be where I am today.

 

Trialjectory:  Sounds like you’ve always been passionate about becoming a doctor. What have you learned from your patient interactions over the years?

 

Dr. D. I am a general practitioner, and I have enjoyed many years of taking care of my patients. I consider this one of the highest forms of service that a person can achieve in their career. In my practice I care for and treat many different kinds of human ailments both physical and mental. This requires a great deal of expertise and experience in order to help with your handling of the patient’s physical and mental welfare. As a physician goes through his or her practice, they gain experience and wisdom that enables them to better serve their patients.      

“I was no longer a practitioner of medicine, but one who was relying upon a fellow physician to guide me through my treatment and hopefully recovery.”

I found that in the beginning of my career I had a lot of knowledge but little insight into the patient.  

At that time I was focused on treating  the disease and not necessarily the patient. As I gained experience, my ability to relate to  my patients increased beyond my knowledge of medical facts and treatments. The greatest influencer of this knowledge was when I became a patient, a patient who was diagnosed with cancer. 

 

Trialjectory:  Receiving a cancer diagnosis, quickly changed your role from doctor to patient. What was that like and what did you take away from the experience? 

 

D.D.: The tables turned quickly when I received my cancer diagnosis. I was no longer a practitioner of medicine , but one who was relying upon a fellow physician to guide me through my treatment and hopefully recovery. This experience has given me the greatest opportunity to improve my abilities as a physician. Being on the receiving end of medical assistance is so very much different that anything I had done before in my practice. It opened up for me a whole new outlook on how I would take care of my patients in the future. It also made me aware of the conversations that I had with patients. Listening to what they are saying was now extremely important. 

 

I realized that I was listening, but not understanding what was truly occurring in the patient’s life. Now I have a deeper understanding of how important it is to truly listen and understand all the questions and concerns that my patients are expressing to their physician.

 

Trialjectory:  How did your knowledge as a physician impact the way you communicated with your clinical team of caregivers? 

 

Dr. D:  It’s a unique and unusual experience to have a disease that you are very familiar with. It’s scary to know what is occurring in your body, placing 

your care in the hands of another is very difficult and was a new learning experience for me. I  found myself asking simple questions to my physician, exactly as my patients would ask me! I found this enlightening and also important to my future as a practitioner. I wanted my physician to be a good listener and to truly understand what my concerns were. She was excellent! She was not distracted by office duties while I was in the office. She was answering my questions and not becoming distracted by some of my more sophomoric inquiries. She took all my questions with a great deal of understanding and empathy. I learned a great deal about myself and a great deal of how I was going to handle my patients in the future, not only those patients with diseases such as cancer, but also mundane medical problems as well.     

My role as patient was interesting , too say the least. I was also scary.  Yet my colleagues were always supportive of my questions and concerns. Thanks to their level of  compassion I learned a great lesson in my future as a physician. 

“A little knowledge is a dangerous thing so acquire a great deal of knowledge to be able to assist both [you and your doctor] in your future treatment and recovery.”

I would have preferred not getting  diagnosed with cancer, but the bright side is I gained an understanding of medicine that I otherwise would never have been exposed to. 

 

Trialjectory:  Your journey is very unique. If you could give a cancer patient any advice, what would it be – and is coming from you as a doctor or patient? 

 

Dr. D:  To be honest, as a patient, I would tell another cancer patient to try not to become so involved with your disease that you lose track of your goal of beating this disease. I would also recommend that as a patient, tell your physician your understanding of the treatment, just do not accept something you don’t understand. Your physician wants you to be well and the more information he or she can give you helps the two of you in your recovery. A little knowledge is a dangerous thing so acquire a great deal of knowledge to be able to assist both of you in your future treatment and recovery.

 

From a physicians point of view, treat the patient first, he or she should be the center of your focus. The disease is important but the patient is always your main focus of concern. I always try to be positive, for I truly believe that the body follows the mind. Keep your patient informed and encouraged.

 

Trialjectory: Thinking back, were there any inspirational quotes or experiences that have stuck with you? 

 

Dr. D: I don’t have any particular inspirational sayings that I live my life by. I believe that rather than sayings, I relied on my life experiences to guide my way through my practice of medicine . So many statements that I have heard from my patients are so profound and have influenced my care for these patients. I have found that the truest statements of life come from those that are close to the end of life. I try to live my life and practice being guided by these thoughts.

When the Doctor Becomes the Patient2021-09-26T07:11:01+00:00

How to Choose The Right Cancer Treatment For You

The latest research shows that cancer patients who are empowered to make decisions about their health have significantly better outcomes – this is what we want for you!

The first step is to own your cancer journey

We have created a toolkit that will help you in your cancer journey, step by step. It includes questions to ask your doctor, pointers for information gathering, as well as direction on how to decide on the next steps. And no matter what stage you are of the disease or in the process, there’s always hope, time and room to explore more options – and we can help you find those, do not hesitate to contact us!

How to Choose The Right Cancer Treatment For You

Once diagnosed with cancer you face many emotions, questions, and fears. Today’s world offers many more options to fight cancer than what it used to, and you should consider all options before starting treatment. Fighting cancer and trying to find, understand and choose THE RIGHT treatment is not easy and we can help you navigate and own your path to recovery.

DOWNLOAD THE FREE TOOLKIT HERE

How to Choose The Right Cancer Treatment For You2020-07-12T14:07:17+00:00

Being thankful

The holiday season reminds me of the numerous times I was told to look at my cancer as a gift.
While I understand the meaning and well-intention behind the words, 
this is truly not only a gift I could have done without, 

it is also not a gift I would wish for anyone else to receive. 

Being afraid for my life, 
dealing with treatment and its side effects, 
and trying to balance treatments with taking care of my three girls – none of it was or felt like ‘a gift’. 
Finding my inner strength to fight cancer, taking responsibility for my treatment options and choices, and specifically taking the road less taken by choosing clinical trials – specifically a clinical trial that ended up saving my life – that’s (!) what I’m thankful for.
Tzvia Bader
CEO & Co- Founder
TrialJectory.com
Being thankful2020-07-12T14:09:21+00:00

TrialJectory Raises $3 Million in Seed Financing Round

New York, N.Y. December 17, 2019 TrialJectory, an AI-powered technology platform that uses self-reported clinical data to match cancer patients with clinical trials and remove barriers to advanced treatment options, announced today that the Company has closed a $2.7 million seed financing round, led by Contour Venture Partners. Proceeds from the financing will expedite the growth of TrialJectory’s platform, which includes adding more clinical trials for different cancer types and expanding the Company’s outreach across the medical, pharmaceutical and patient communities. To date, TrialJectory has matched thousands of patients for clinical trial enrollment and continues to add new studies to the platform each week.

 

“As cancer is the second leading cause of death for Americans – with thousands of new cases diagnosed each year – having access to advanced treatment options is a necessity, not a privilege, as new trials provide better outcomes to patients,” said Tzvia Bader, TrialJectory CEO and co-founder. “What’s more, one of the top obstacles that oncologists face today is the lack of clinical trial access for patients, which is due to the availability of more treatment options overall. Additionally, it is a very complex process to match the right patient with the right treatment, especially with the rise of personalized medicine.”

 

“Not only is TrialJectory’s platform expanding access to new treatments for patients, but it’s also revolutionizing the trial recruitment process as a whole by reducing operational costs and enabling new drugs to hit the market sooner,” added Bader. “The bottom line is that patients have the right to take action and find the best treatment for them. Leveraging AI is the key to making this happen and, ultimately, to saving lives.”

 

TrialJectory currently supports trials for breast cancer, colon cancer, bladder cancer, melanoma and myelodysplastic syndromes (MDS; often called preleukemia). The engine works through mimicking the mind of an oncologist, reading all unstructured treatment descriptions and extracting the data that’s relevant to the patient. TrialJectory clusters, classifies and standardizes this information, creating a unique database that highlights patient attributes attractive to clinical trials. Patients are then matched to clinical trials through self-reported, dynamic questionnaire answers and can filter the trials and share the information with their oncologists to move forward in the process if appropriate.

 

“TrialJectory’s work – driven by a highly experienced management team, comprised of both oncology and technology experts – is disrupting and reshaping how we think about traditional cancer care today,” concluded Bob Greene, lead investor. “Even more important, it is empowering patients to take back control of their treatment, and we look forward to watching TrialJectory’s platform continue to grow quickly. We believe that the Company has the potential to become a go-to resource for the global medical community to help doctors provide personalized, matched treatment options to patients in need everywhere.”

TrialJectory Raises $3 Million in Seed Financing Round2020-07-12T14:10:29+00:00

Breast Cancer Clinical Trials Guide

Over the recent past, medical advancements, even in terms of research and analysis, have grown sporadically. These advancements have birthed some practical practices, one of them being clinical trials for breast cancer. You may be wondering what these trials mean and what they encompass. Even with a slight understanding, I can assure you that many are the benefits that come along with this practice. A breast cancer clinical trial evaluates the safety and effectiveness of new approaches and or treatments for diseases,  In other words, these trials are used when considering whether a new type of treatment or medication is effective enough in combating breast cancer. Clinical trial goals are to find out whether a new treatment is more effective than the previous ones. So, you should understand that clinical trials are tests of what has never been used before in treating breast cancer.  

Breast Cancer Clinical Trials

Breast Cancer Clinical Trials Trends

Recently, breast cancer clinical trials are being used vastly in helping researchers and doctors to come up with the most powerful form of treating this illness. You, however, do not need to worry about whether the clinical trials are legitimate. In fact, this medical practice has been identified and recognized even by government entities. Therefore, you do not have to doubt the acceptability of clinical trials if you wish to participate in one. The main agendas of these trails may vary. In some instances, they seek to evaluate ways of reducing the spreading of breast cancer or its severity. In other cases, it aims to identify the usefulness of non-drug treatment even on factors like dieting and complementary therapies. As noted earlier, breast clinical trials have already been recognized even on global levels. For example, the National Cancer Institute has a fully developed website where you can access numerous approved breast cancer trials.

Breast Cancer Clinical Trials Benefits

The good thing about the enhanced breast cancer trials is that once you participate, you can receive the standard of care of the most effective treatment currently available. In some cases, the breast cancer trials help to establish a promising treatment that, if practical, the participants become the first beneficiaries.  People ask themselves questions like, Are the trials safe? Are there any side effects? Well, you should note that before a clinical trial is ready for the test, it must be judged safe and ethical by relevant medical bodies. If at all anything goes wrong, an ethical committee approves compensation. Another added benefit of participating in a trial is that you get to have an opportunity to help others and even make breast cancer treatment better. One of the most notable advantages is that as a breast cancer patient, you gain the privilege of having regular medical checkups. In this case, doctors carry out extra tests to ensure that everything is stable concerning your health. This merit helps to eliminate additional costs, especially if you had to visit a clinic for checkups. Note that, it is under this test that if anything uncommon is noted, immediate treatment measures are taken. The constant monitoring comes along with additional tips on how to exercise, what to eat, and any medical advice that relates to breast cancer. Therefore, it is very safe if you decide to take a breast cancer clinical test. 

Search for Breast Cancer Clinical Trials

Since clinical trials are widely recognized, they can take place anywhere in the country, including other parts of the world. In most cases, you are likely to find them in medical facilities and hospitals, while durations may vary. In other instances, agencies like the National Cancer Institute establishes numerous sites across the country and gives specific dates. During this kind of breast cancer clinical trial, you can expect a bigger number of individuals. However, note that a clinical trial must have an eligibility criterion or rather some guidelines of who should participate. 

Finding Breast Cancer Clinical Trials

If you would like to find clinical trials for breast cancer,  you can conduct relevant research by searching the internet. One of the most resourceful websites for finding breast cancer clinical trials is with Trialjectory. We are an AI-based marketplace that helps cancer patients and their oncologists match their clinical profile with clinical trials. TrialJectorys first provides you with a list of trials that are right for you based on your past and current medical history. Next, you review and share these options (if you would like) with your doctors. From there, you decide which one trial you would like to apply to. We then will connect you to a trial site and help facilitate all communications in order to ensure you get access to the best treatment. 

Trialjectory makes the process of finding a clinical trial simple, as we search for clinical trials for you and match them with your individual disease profile. Once you have been matched, we will help you apply to a trial, and get started. If you need assistance in learning more about the clinical trial process or have any questions, please email our clinical team at:  clinicalteam@trialjectory.com.

Breast Cancer Clinical Trials Guide2020-10-02T16:20:43+00:00

Participate in a Clinical Trial: A Guide for Patients

Participate in a Clinical Trial

What are clinical trials?

Clinical trials are designed to find new or better ways to treat, prevent or screen for a medical condition.  These trials involve human participants to evaluate the safety and effectiveness of new approaches/ treatments for diseases, including cancer
In clinical trials, patients receive specific interventions according to a research plan, such as new drugs or devices, procedures, and even changes to patients’ behavior (diet). Researchers are always exploring different combinations of therapies, whether it be introducing a new drug or using a standard (approved) treatment in a new way to find the best and most effective approach to treating patients.

Should I participate in a clinical trial?

There are many different reasons why people decide to participate in clinical trials. In the past, it was mainly due to standard treatments not being as effective as they should be, or the side effects were too severe.  But today, due to the innovations in research and the effectiveness of new drugs with fewer side effects the National Comprehensive Cancer Network (NCCN) has updated their guidelines, where clinical trials are recommended as the best management for cancer patients.
Participating in clinical trials can present both benefits and risks, and it is important to stay informed, and to speak with your loved ones and doctors to decide if a clinical trial is right for you. 

5 benefits of participating in a clinical trial: 

  1. You will get access to the newest treatments
    You might receive access to the latest treatment options before they become available.
  2. You are carefully monitored by health care professionals
    You are carefully monitored by a medical team, every step of the way
  3. You play an important role in your healthcare
    You are taking an active role in your health
  4. You become a part of the future of medicine
    You are participating in research that could bring medical advances to cancer treatment
  5. You can receive free or low-cost treatment
    Clinical trials often (not always) cover costs related to research treatments

What are the eligibility criteria for trials?

In order to be able to join a clinical trial, a patient must meet a list of requirements (trial eligibility criteria), which include, among others: 

  • Gender
  • Age
  • Overall health
  • Treatment history 
  • Disease stage

Why is eligibility criteria important?

Eligibility criteria for trials are used to help identify patients with a specific disease profile that is intended for the investigated treatment in the trial. This is used by researchers to ensure patients do not have any outstanding conditions that may impact the trial results.

How do I find cancer clinical trials?

Finding clinical trials can be a long process, where less than 5% of cancer patients are enrolled in trials. This could be due to the lack of suitable patient-friendly tools that help identify trials that match current medical conditions. 

How can TrialJectory help?

We collect your disease profile and match it to trial eligibility criteria. We do the hard work for you, as we know how difficult it is to browse through those complicated medical terms and find the right match for you.
First, we provide you with a list of trials that are right for you. The next step is for you to review and share these options (if you would like)  with your doctors. From there, you decide which one you would like to apply to. We will then connect you to a trial site and help facilitate all communications in order to ensure you get access to the best treatment. 

I want to enroll in a trial, what do I do?

You have come to the right place, we are here to help. Our job is to make the process of finding a clinical trial simple, as we search clinical trials for you and match them with your individual disease profile. If you would like to get started, click here. Once you have been matched, we will help you apply to the trial, and get started. 

Who can I contact?

If you need assistance in learning more about the clinical trial process or have any questions, please contact our clinical team. You can click the Need Help button on the bottom right corner on our website or send us an email. We are here for you. 

Participate in a Clinical Trial: A Guide for Patients2020-07-12T14:13:35+00:00