Webinars Archives - TrialJectory

Cancer, Party of One

My Fellow Cancer Patient,

Sometimes it’s lonely – having cancer. It can be difficult to witness the world continue to rotate at its normal, steady pace, when you have cancer. It can be insufferable to sit in traffic or be stuck in line…don’t they know, you don’t have a minute to waste? It can be painful to watch everyone around you laugh with carefree abandon – what’s so damn funny? Don’t they know I’m fighting for my life over here?

Everyone who has walked in your shoes, days, years or even decades ahead can relate to the sense of loss, of loneliness, of feeling left behind, of feeling strange about new emotions, of being uncomfortable with changes in your body that come with cancer treatment, of being disappointed, angry, terrified, exhausted and everything in between.

So I’m here to tell you that You’re. Not. Alone.

————–

You’re not alone if you become angry and a little bitter.

Having cancer can feel like a lonely existence.a try Like everything and everyone is keeping on keeping on while you are stuck in this black hole, this vortex of doctors and needles and biopsies and tests and nuclear medicine, oh my! You didn’t even know what a pet scan was a minute ago, and now all you can do is obsess over a clean pet scan result.

Friends are going to work and making summer vacation plans. And you’re frozen in fear about the real possibility of not being able to attend your daughter’s next birthday party because you just don’t know how much time you have and time has now become a real variable and your most valuable commodity. That’s a lot and more than enough to make you angry at the world.

Let me tell you, anger is precisely the correct response to feeling like you’re being jipped out of life…out of time…out of your own existence…that your kids are possibly being jipped out of a parent or as in my case, my parents being forced to watch me, their child, suffer after already losing their son, my brother, earlier in life. Fair? No. Not by a mile, so if bitterness creeps in from time to time, it’s perfectly expected.

You’re not alone if it’s summer but you’re freezing.

Losing your eyelashes and the hair on your head, on your arms, on your legs, in your nose and south of the equator leaves you feeling unexpectedly cold. A light breeze can be enough for your teeth to start chattering or your nose to start running or your eyes to water. It’s normal to start leaking or shivering at any given moment. I always kept tissues stuffed into my pockets, a cozy hat in every room and an extra hoodie in my car.

You’re not alone if your reflection in the mirror is a little different than the one you remember.

Chemotherapy lowers your white blood cell count and weakens certain structures, like your nails. Your nails might become brittle, discolored or develop ridges called Beau’s lines. Chemo and radiation can cause changes in your salivary glands or in the lining of your mouth which can upset the balance of bacteria and lead to infections, mouth sores or even tooth decay. Also, some chemotherapy agents can cause hyperpigmentation in skin, leading to dry, itchy or darkening skin tones.

I suffered from mouth sores, grayish skin, wiggly teeth and dark toenails. Not a pretty site, but we were trying to save my life, after all, not my toenails, so I kept it in perspective as much as I could and had those suckers painted in pretty shades of pink.

My recommendation is to slather on the sunblock, paint your nails with hardening nail polish, and make sure to have excellent oral hygiene. The good news is that most of these side effects affect a small portion of cancer patients during treatment and are usually temporary.

You’re not alone if you wake up at night in a cold sweat.

Fear sneaks up on you when you least expect it. Sometimes when your body is at rest, it starts to purge and you find your heart pounding unexpectedly or your hands shaking feverishly or your mind racing in circles, or your body suddenly trembling in the middle of the night in panic.

I remember sitting quietly, calmly on the bus, reading a book, and my heart just pounding out of my chest. I remember lying awake in bed, deep into the night, contemplating all the what-ifs and mourning all the could-have-beens.

It’s ok to be scared. It’s ok to feel those feelings. It’s ok to cry. It’s ok to mourn. Give yourself permission, space and grace to sit with yourself and reconnect with your emotions, no matter when they sneak up on you.

You’re not alone if your favorite perfume/cologne makes you nauseous.

Certain types of cancer treatments can affect your sense of taste and smell. Don’t be alarmed if your sense of smell becomes hyper-sensitive during or after treatment, or if you get a metallic taste in your mouth.

Seventeen years after my cancer treatment, I still cannot eat a turkey sandwich with cranberries because I had it for lunch after my third chemo infusion. Nor can I wear my favorite perfume from that time, Channel’s Mademoiselle as it brings me back to a time and place that I do not recall fondly. Always preferring vanilla to chocolate ice cream, I craved chocolate and nothing but chocolate during chemo…and ate it in obscene proportions. After treatment, I went back to vanilla and haven’t budged since.

You’re not alone if your stomach feels like a hot air balloon at take-off and you’re passing gas faster than a run-away train.

Excessive gas, bloating and abdominal pain, especially for colorectal and stomach cancer patients, are common symptoms. Also, certain foods, beverages, medications and even behaviors can contribute to gas build-up. Try these tips to minimize your discomfort:

Avoid carbonated beverages
Avoid dairy products such as milk, cheese, or yogurt
Avoid gas-forming foods like broccoli, cauliflower, brussels sprouts, cabbage, corn, turnips, onions, peas, peppers, radishes, garlic, cantaloupe, watermelon, apples, avocados, beans, lentils, and nuts
Avoid behaviors that can cause you to swallow extra air. Eat slowly, drink liquids in small sips and toss all the drinking straws in your house

You’re not alone if you have used your “cancer card.”

Ah…the infamous cancer card. The one we secretly keep nicely tucked in our back pocket and feel the right, the permission and, yes, the clearance to use at our own discretion, in appropriate moments but even more-so in the inappropriate ones.

It’s the proverbial “get-out-of-jail” for free card that gives you leverage in low-stakes situations like getting the last slice of pizza or or negotiating dinner reservations or winning an argument with your spouse. I mean…what’s he going to do? Stay mad at you for buying those shoes?….You have cancer after all! Using the cancer card can bring a little levity to a serious situation or could even help you get out of hot water as it did for me.

One morning, I was running late for my PET scan. A nightmare scenario of complete bumper-to-bumper gridlock on the George Washington Bridge followed by some Mission Impossible-style driving down the FDR in rush hour traffic. It wasn’t looking good – we were surely going to miss the appointment. Now, if you know anything about PET scans, you know that 1) they are very progressive tests that are also quite expensive and not always covered by insurance companies and 2) you have to be at your appointment ON TIME because the radioactive isotope being injected (to determine any spread of cancer) becomes ineffective after about one hour and the PET scan cannot and will not take place.

So if your insurance company clears it and you get the appointment scheduled, you had better be there on time, sucking down that canister of barium with a smile on your face…like it is a damn pina colada!

I looked at my husband and said, “Take the left turn on Lexington,” fully knowing there was no left turn allowed, at that hour, as clearly marked in red letters on the big sign in front of us. “Take the turn!” I shouted. And he did. And we promptly got pulled over by a handsome NYC cop, with sirens and lights, who had all the time in the world to give us that slow, painful ticket.

I looked at him dead in the face and said, “Sir, I know what we did was illegal, but I have cancer.” Ugh, I said it. I did. I said it! Damn it! I used the cancer card. Cringe!!!!! “I have

c a n c e r,” I continued in haste, “And I’m very late for an important test at the hospital.”

He looked at me and said, calmly and slowly like he was the sheriff in a Western, “Ma’am, I’m sorry but I don’t know anything about cancer. I don’t know anyone with cancer. I don’t know what cancer even looks like or…” I stopped him right there. “Sir! THIS is what cancer looks like” I said as I popped off my short, dark wig and held it in my right hand, hovering above my bald head. WHAT? Did I just really do that? Yes, in fact, I did.

My husband and the cop both stared at me in horror…in disbelief…in silence. “This is it,” I thought. Don’t – say – anything! The next person to speak will lose…first rule of negotiation. So there I was in a stare-down with the cop, and thankfully, after a long pause, he broke first. “Ok ma’am. I’m going to let you go but I must give you this ticket. However, show up at the court date next month, and I’ll dismiss it. You’re free to go, and good luck.”

I not only made it to my PET scan in the nick of time, but the cop kept his word and dismissed our ticket. I retired my cancer card after that episode. Didn’t want to press my luck. No sir-ry, I was one-and-done!

————–

So if you’re ever feeling like you’re a “party of one,” remember that you are in good company. We have been where you are, and sadly, others will follow. Cancer is actually a sisterhood, a brotherhood, a community of lonesome, lonely loners who found one another in the worst of times but also had enough self awareness and foresight to value the connections made, the experiences shared, and the hope forged along the way. Welcome to the club, my friend.

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.