Tag: NETs

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.

Nerding Out on NETs in NYC

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Me with the Godfather

My six month check-up with my Neuroendocrine Tumor (NET) specialist, Dr. Wolin, in New York City happened to coincide with Big Apple NETs support group Luncheon with the Experts.

As always, it was wonderful to connect with other NET survivors and hear their stories. However, being able to ask questions of some of our communities champions, was pretty incredible. The most notable of the panelists was Dr. Richard Warner, who I’m calling the Godfather of NETs. He was accompanied by two knowledgeable colleagues, Dr. Lynn Ratnor and Dr. Jerome Zacks. During lunch patients were allowed to ask general questions regarding treatments, surgery and lifestyle. Some of the major topics included:

Familial links – This was an especially timely topic for me as I just had an email conversation with a NET survivor, whose sibling also had a NET. Everything I’ve ever read indicates it is not a hereditary disease and Dr. Warner’s opinion is that there are links. He thinks this will be a hot topic in coming years as the incident rates rise for NETs. Then this week, the Healing NET released some information on a clinical trial looking for enrollees on this topic.

Diet and Alternative Treatments – The general consensus of the panelists was that these methods should not be used alone, but in conjunction with treatments. And that patients should be cautious to not negatively impact any proven treatments. Dr. Warner did share some of his opinions regarding foods (and other things) that impact carcinoid syndrome:

  • Nasal spray
  • Dental shots with epinephrine
  • Alcohol (Specifically port wine was mentioned)
  • Fermented foods such as ripe cheeses, herring, etc.

Note: I’m sure this list should be longer, but these are the items he mentioned.

There was also discussion about products such as CBD oil, alkaline water, plant based diets and excluding sugar. Being the scientists that they are, they would not stand behind anything that hasn’t been studied and proven.

Gallium-68 – There was some discussion and explaination about this newly approved scan and it’s ability to detect small tumors often undetectable by CTs and MRIs. The Carcinoid Cancer Foundation has put together a nice page of information and locations where this is available.

Xermelo – A newly approved drug to be used in conjunction with Lanreotide or Sandostatin for uncontrolled carcinoid syndrome. Read the FDA approval here.

It was a really nice few hours and I did learn some new things.

Then Monday, I had my very first Gallium-68 scan at Albert Einstein-Montefiore Cancer Center and wanted to chronicle the process for others.

Setting up the scan wasn’t too complicated. The most unnerving part was when I was told I’d have to pay upfront for the test and they would reimburse when/if my insurance covered the scan. Fortunately, my insurance came through at the last minute and I did not have to cough up $3,400. Can we all just pause for a moment and say, Thank You to the Insurance Gods.

I received several calls ahead of time cautioning me this is an extreme fast for four hours. Normally, I fast for six, so four is a walk in the park. After my Uber dropped me off at the wrong address, in the Bronx, in the rain, I eventually figured it out and made it just in time to my appointment.

I was called back right away for them to start an IV, which is always a fun process for me since I’m hard stick. Normally, the average number of sticks is four and they did it in three, so that’s pretty good.

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Just a little metal tube of radiation, NBD. 

As soon as I was hooked up, two gloved doctors appeared with a thick metal tube full of radioactive liquid they injected into my veins. It wasn’t long, but it felt like fire going through my veins. They told me that’s unusual, which is becoming the story of my life. I was cautioned sometimes people can become nauseated after the injection. Fortunately, that did not happen to me.

After they emptied the tube, everyone quickly left the room and I relaxed and read as radioactivity flowed through my veins.

An hour later, someone showed up to escort me into the scan room.

As far as the actual scan, it was a piece of cake, compared to an MRI. There was plenty of room between my body and the machine.  The hardest part was lying still with my arms above my head for 45 minutes. I had them shut the lights off so I could take a little nap.

Then it was over and I was instructed to drink a lot of water to flush my system. I was pretty wiped out the rest of the day, which I’m not sure was due to the scan, the rain, the coldness, the lack of sleep, the excessive amount of walking NYC demands and/or the emotional/mental drain. Probably all those things, so we ordered in and finally emerged Tuesday and Wednesday evening for a bit of fun in the city.

If you’re interested in learning more about Gallium-68 scans, I recommend the Carcinoid Cancer Foundation website.

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.