Tag: cancer patient

The Power of Words

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outlivingit

As featured on First Descent’s Outliving It http://outlivingit.com

 “Sticks and stones may break your bones, but words will never hurt you,” was a phrase uttered in my household growing up. This was usually preceded by an insult or verbal nastiness from a cousin or sibling. With all due respect to the adults who doled out this prescription…Worst. Advice. Ever.

Words do hurt and have the power to evoke the strongest emotions. Chances are, if you’re reading this, cancer has been one of the most powerful, painful, transformative, definitive words of your life. It’s a word that takes less than a couple seconds to say, but it’s effects permeate a lifetime.

Through personal trial and error, I’ve found that after spending some time thinking about the vocabulary, it is possible to transfer some of the control from cancer to myself, which is a welcomed feeling considering how powerless cancer makes me feel. I’ve also learned that the vocabulary is different from person to person. If you’re not sure where to start, below are a few of the guidelines I’ve created for myself when talking cancer. Hopefully some of these will get you inspired to create your own list.

I have chosen to not to claim cancer. Don’t want it. Never have. Never will. Therefore, it’s not “my” cancer, but “the” cancer. “I don’t have cancer,” but “there is cancer inside my body.” Sure, it’s a play on words, but this is how I make sure cancer knows it will never be mine no matter how hard it tries. Like, ever. Also, something about the word “patient” makes me feel helpless, which is why I refer to myself as a “survivor”, which makes me feel powerful.  This is a label I attached to myself the day I was diagnosed and not the day I heard, “no evidence of disease.” There are many definitions to “survivor” but it’s pure context is, “to endure or live through (an affliction, adversity, misery, etc.)” so I am surviving no matter my current medical status.

One of the many things cancer has taught me is that most people do not know how to respond when I tell them how it has impacted my life. I can easily predict the deer in headlights look as the person searches for the right words. Naturally, they respond with a cliched, pre-packaged, canned and sometimes offensive response. I totally get it. I used to be this person. I still am this person sometimes. Cancer is so awkward and uncomfortable. However, what I have found useful is to tell my friends and family what’s up, ahead of time, if possible, through an email message, so they have time to process and formulate a response.  In addition, I’ve also found it helpful to tell them what they can say to encourage and support me. Doing this has made it easier on both of us. Our friends and family want to be a source of encouragement and support and it’s unreasonable that we expect them to say the right thing when they have no idea what we need or want to hear. Here’s a couple suggestions I’ve used in the past:

Instead of saying, “I’m so sorry you’re going through this,” I ask that they say,  “I know you have the strength to get through this,” because I do. The former invokes feelings of pity, while the latter makes me feel strong and supported. I also asked for my supporters not use battle language or tell me to beat it, stay strong or positive. My feeling towards these phrases is that they imply if I just try a little harder, then I will be healed. Being the recipient of these words only invokes feelings of guilt if I don’t beat it or have the inevitable and normal periods of weakness or negativity. Cancer is not a matter of trying hard enough. And when all else fails, I enjoy the honest simplicity of, “I don’t know what to say.”

And for the love of all that is holy and sacred in this world, please, I beg of you, to not saying that someone, “lost the battle” if they pass away. We don’t describe death from heart disease, freak accidents, natural causes etc. in this manner. Using this phrase implies if the person only fought harder, they would have not died.  Loser’s lose which is the exact opposite word I would use to describe someone who’s been through cancer treatments. Those impacted by cancer endure surgeries, toxic chemicals, crazy side effects – cancer survivors are hard core, bad-asses. The strongest of the strong. Not defeated losers. In fact, in the Sorcerer’s Stone, Dumbledore wisely says, “Death is but the next great adventure,” which seems like a fitting description for those in the First Descents tribe, who have passed on.

Again, these are the terms that work for me. Just like every cancer is different, the words we find comfort and power in will be different. I encourage you to spend some time thinking about your vocabulary and once you’ve built your dictionary,  tell your support team.

This blog was featured on First Descent’s Blog, www.outlivingit.com. First Descent’s is a non-profit that offers young adult cancer survivors (FREE) adventure trips where they learn the healing power of community and nature through participating in activities such as kayaking, rock climbing and surfing. In September 2016, I attended a First Descents Surf Program in Santa Cruz, California. Read about that here.

A Day in the Life of a Cancer Patient

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Last Thursday, I was driving to the Cancer Center for my monthly injection of Lanreotide and had an idea to photo document the day in the life of a cancer patient. Then I decided against it because I felt uncomfortable asking the staff for selfies of my activities and now, I regret it.

As I was leaving the hospital, I checked Twitter to see that the American Healthcare Act (AHCA) passed in the House of Representatives and I was flooded with so many emotions – fear, anger, worry, stress. Isn’t it enough I have to deal with cancer?

So, in lieu of a photo documentary, I still think there’s some value in posting the play-by-play of my day to provide a small glimpse of what illness suffers endure. However, it should be noted that in the big world of cancer, I have it pretty easy.

6:00 a.m. Rise, drink coffee, wake up, clean up.

7:00 Shower, apply lidocaine cream to port to numb the 3/4 inch needle phlebotomist will stab into my chest soon.

8:00 Out the door. What should take 20 minutes, takes 50 thanks to morning traffic.

8:50 Arrive, park and walk to the hospital.

9:00 Check-in, #1.

9:15 Check-in, #2. I confirm my address, insurance, emergency contact and complete forms, noting any new symptoms since my last visit, including a demographic section, where every month, I have to check the box indicating I am still white. I think these forms are dumb, so I stopped filling them out months ago.

9:30 Blood draw/Chest stabbing. As I’m walking into the lab, I tell the phlebotomist that my tube is the white one in the fridge. Yes, I have my own tube and section in the fridge.

9:45 Wait for the Nurse Practitioner.

10:15 A medical assistant takes me to an exam room and records my blood pressure, heart rate, weight and asks me the questions on the forms they gave me, which is another reason I stopped filling them out.*

10:45 Even though my appointment was at 10:00, the Nurse Practitioner strolls in late. She’s scheduled for patients every 15 minutes, which is completely unrealistic and why she’s late every single time. She asks me all the questions on the form I refuse to complete and confirms, “Yes, I still need the shot,” I’ve been getting every month for two years now.*  Cost of the 15 minutes – $252.

11:00 I make a side trip to the records office to get the disc from my most recent scan since I get to repeat this process with my specialist in New York City in a couple weeks. I fill out the form and tell the clerk I’ll be back in a couple hours.

11:15 Arrive at the Infusion Center, Check-in #3.

12:30 p.m. I’m called back to my infusion room. The medical assistant takes my blood pressure, heart rate and asks me the form questions…again. The nurse shows up moments later and asks me the same questions…for a third time.*

1:30 My shot finally shows up from the pharmacy but needs to sit at room temperature for 30 minutes. Cost of the shot – $18,397.20.

Somatuline_image_1

The tiny pic doesn’t do justice to the needle, but trust me, it’s muy grande.

2:00 The nurse administers the shot. It is the thickest needle any of them have ever seen and is injected into my butt-hip area. It sometimes leaves a nice lump, so we alternate left and right cheek each injection.

 

2:02 I’m now in line to Check-out.

2:15 Pick up the disc of my recent scan.

2:30 Arrive in my car, check Twitter to see the AHCA bill has passed the house is a step closer to reality.

2:45 Arrive at home and call my Senators.

What the daily account does not include is the conversation my husband and I had at dinner, where we re-agreed to move our lives to his home country of France if that’s what it takes to keep me alive and well. For this, I am so lucky. Most sick American’s do not have this option.

What the daily account above does not include is waking up several times Thursday night and not being able to fall back to sleep because I was worried for my well-being and the well-being of other people who will go bankrupt and/or die because of this bill.

What this daily account above does not include is the emotional and mental side effects from illness.

I could use this platform to share my specific views on the debate, but I won’t. It’s all been said and I do not have anything new to add to the debate. All I can do is share my story with my legislators in hopes that it will inspire them to do the right thing for the citizens of the country which boasts itself as the greatest on earth.

If you’re impacted by illness (and who isn’t), I encourage you to contact your Senators. Share your story. If you’re not sure where to start or what to say, I recommend https://5calls.org/#about where they provide your representative’s contact information with scripts on what to say.

*The snark is directed at the system and not the staff.  They are simply following protocols and are 110% awesome.

 

Two Approaches to Scanxiety

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Ugh! Getting scans is a necessary evil along the road of cancer. It is my opinion, terms like scanxiety should be clinical diagnoses where it’s affected should be prescribed copious amounts of sleep aids, anti-anxiety meds and painkillers. It is real and it is no joke. I once asked a more seasoned survivor, “Does it ever get easier?” They just laughed, then immediately stopped and with the straightest, most serious face, said, “No. No, it does not.” And I’m here to attest that three years in, it has not gotten easier, but I have learned how to manage the anxiety.

Scan Week 2014
Ugh! My scan is on Friday. I clear entire schedule this week, so I can worry in solitude. I don’t want to tell anyone this is the week because they’ll spend Friday sending me texts like, “Thinking of you” and I won’t know how to respond because I know I have cancer and I know it’s everywhere. In fact, why don’t we just skip the scan, since I know my doctor’s going to tell me there’s nothing more to be done. I spent the rest of the day eating McDonalds, in bed, watching an entire season of “The Real Housewives of New York”. Waking up on Tuesday, I decide to treat myself with a shopping trip. While shopping, I have thoughts along the vein of, “Why are you even buying clothes anymore since you’ll be dead in a few months anyway. It’s a waste of money.” I leave the mall, having bought nothing. I go home and take a nap. Wednesday, I plan my funeral complete with instructions, playlists and who should be alerted. Thursday, I start a shared Google docs folder with all the instructions for home since I know when I die in a couple days it will be super important for my husband to know that trash day is Monday and not to forget to vacuum under the bookshelf because that’s where cat hair hides. Friday, In the shower, I tell myself, “I don’t even care if I have cancer”. I drive to the hospital, get undressed, jump in the MRI machine. It’s taking longer than normal. I picture at least ten doctors in a room with worried faces where they’re saying things like, “She’s a goner.” When the MRI concludes, I notice the technician won’t look me in the eye. Yup, confirmed, I should get my affairs in order. Whatever, I don’t even care if I have cancer anyway. I stop at Taco Bell. I’m starving thanks to the no food for 6 hours rule. I cry the whole way home as I stuff tacos in my mouth. I didn’t protest when my oncologist scheduled this test on Friday, which means I get to continue post-traumatic scan anxiety throughout the weekend, ruining both my weekend and everyone who’s around me. By the time my doctor’s appointment occurs the following Thursday, I’m back to, “I don’t care if I have cancer.” My oncologist comes in and wants to small talk. Make a note that should there be a next time, I will not even say hello and tell her to cut to the chase and tell me how long I have.

Scan Week 2017
Ugh! My scan is on Friday. Resist the urge to cancel all your plans. In fact, do the opposite. Look at your calendar and make sure you have something fun planned every single day. I schedule lunch time yoga Monday thru Thursday. I go for a walk every morning. Knowing it’s going to be beautiful on Tuesday, I call a friend and ask if she’s free to meet and color at the park, which is something we talked about months ago. She is and we enjoy a few hours chatting and coloring. Wednesday, I go to Target and buy a small gift for a friend who just accomplished a major goal. I write her a nice note and put the gift in the mail. Thursday, I clean and organize the garage. “Idle handles are the devil’s workshop.” Friday rolls around and I did not sleep good. My MRI isn’t until 10:30, so I lay in bed watching Jimmy Fallon. A big indulgence, plus I can’t eat or drink anyway. At 9:00, I rise, shower and put on a nice outfit. I do my hair and make-up. Look good, feel good. I get to the hospital and they’re on-time. I jump into the MRI machine and notice how much my meditation practice has come in handy during the 35-minute study. I just lay there and focus on my breath. When I exit the room, my husband’s in the waiting room. We go have a lunch. I don’t get McDonalds. We return to the waiting room until the nurse calls us back. I’ve since learned I can just tell my oncologist I don’t want to wait the weekend. If she schedules my scan on Friday, I want my results Friday. Without protest, she obliges.

So, the lesson in these two stories is….if you suffer from scanxiety, having a plan for the days leading up to your scan is absolutely critical. Be sure to develop this plan before scanxiety starts. Write a list of things that make you happy and are fun. Don’t hide. Call a friend – that’s what they’re for and I know they’d love to be a part of your scanxiety reduction plan. Communicate with your doctor and make sure they know you don’t want to wait. Implementing these tactics hasn’t made my scanxiety disappear, it’s just made me get through the week with less torture.