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:

 

1. Avoid carbonated beverages
2. Avoid dairy products such as milk, cheese, or yogurt
3. 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
4. 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.