Flashback #17: 8 Years Of No Good Cancer

no good cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #17: 8 Years Of No Good Cancer, written by Michele. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….It’s been eight years since I put on the necklace, eight years since I felt the lump under my skin. And it’s been almost eight years since I first heard those words: “Michele, it looks like you have thyroid cancer.”

It was a Friday afternoon in late November, two months after my wedding and the day before my husband and I were planning to go pick out our Christmas tree. My doctor said those words, and then she made two calls, and just like that, I had appointments with a surgeon to remove my thyroid the day after New Year’s and an endocrinologist to manage my care forevermore after the surgery.

My husband and I drove home in mostly stunned silence, but for my confused questioning: “I thought I was doing everything right. I run. I don’t smoke. I eat blueberries, for god’s sake.” I knew all too well even before that day that cancer doesn’t discriminate, but I still never expected that it would happen to me.

My thyroidectomy was a little more than a month later, but on November 30, 2007, I became a cancer survivor. I felt physically just the same as I had the day before — which is to say, completely fine — but my life had been separated into two distinct periods, one before cancer and one after…

……

Read the rest of the article here!

The “Good” Cancers Aren’t So Good

no good cancer

As some of you may know, September is Thyroid Cancer Awareness Month. However, September is also Childhood cancer, Leukemia, Lymphoma, Prostate, and Ovarian Cancer Awareness Month. That’s a lot of awareness for just four short weeks! But a couple of the cancers we celebrate and advocate for this month are often called the “best” cancer to get. Thyroid cancer and prostate cancer are both sometimes called “good” cancers, due to the fact that they are considered easily treatable when caught at early stages and are often thought to be slow-growing. Though it is true that thyroid cancer and prostate cancer both have very high five-year survival rates (98% and 99%, respectively), there isn’t anything “good” about them.

Even with such low mortality rates, thyroid cancer and prostate cancer are fairly common cancers. The American Cancer Society has estimated over 180,000 new cases of prostate cancer and over 64,000 new cases of thyroid cancer for this year. Prostate cancer, though often thought of as a “good” cancer, it is still the second-leading cause of cancer deaths in men, only preceded by lung cancer.

I have been told by doctors that thyroid cancer “is the best one to get,” yet treatment often includes removal or destruction of the thyroid, which is a very important little gland! Though the surgery can usually be done quickly, recovery takes time for the neck muscles to heal themselves, as they must be cut in order to reach the thyroid. Many people, including myself, often experience permanent voice changes after thyroidectomies, and are completely dependent on synthetic thyroid hormone for the rest of their life. Prostate cancer typically involves very tricky surgery, and even when it is successful, it can still lead to chronic issues such as incontinence or impotence.

Both diseases are usually described as “slow-growing,” but when either of these cancers spread it can lead to many severe issues. Thyroid cancer often spreads first to the lymph nodes, and can metastasize in the lungs. When prostate cancer spreads, it typically affects lymph nodes and the pelvic or hip bones.

Every stage and type of cancer causes harm to the body, and many times the effects of treatment last for years. I don’t see anything “good” about that. Putting an extra label of “good” or “bad” onto this disease creates a completely unnecessary hierarchy on something that doesn’t need to be ranked.  It’s time to remove the phrases “good cancer” and “bad cancer” out of our vocabularies, and focus on finding more effective treatments for all cancers and supporting the patients and survivors.

If you liked this piece, you might also be interested in reading 8 Years of No Good Cancer and The Anti-Bullying Cancer Manifesto

Dropping the “C-Bomb”

cancer bomb

I told someone a secret recently. Well, it’s not quite a secret since quite a few people know it already, but I hadn’t felt the need to tell that particular person about it.

In a strange turn of events leading out of boredom at work, a coworker and I were trying to figure out via Facebook if we knew anyone mutually since we found out that we both grew up in the same area. One thing led to another and they stumbled across my Facebook page, and subsequently onto the “secret”: – a giant pink, purple, and teal banner reading “September is Thyroid Cancer Awareness Month.”

They asked who it was I knew that had thyroid cancer.

“Uh, I did.”

Yep. My not-so-secret was out. I had thyroid cancer.

“Really? When was this?”

“I was 20 when they found it. I’ve got a nice scar, now.” I quickly pointed at the faded pink line on my neck, and hoped that they couldn’t tell I was shaking with nerves and that it would be the last question about it. Thankfully, it was.

Almost 4 years since my all-clear, I still get nervous letting people in on this part of my past. Most of the time I don’t bring it up unless asked. My introverted, Type-B self is much more comfortable learning about someone else’s past than letting them in on mine. The first time I told my story was nerve-wracking to say the least – at a small party at a professor’s house, about four months after my clean scan. I shook and stuttered the entire way through. I felt everyone’s eyes on me as if they were bright, hot lamps. I don’t think I even looked up from my plate.

I shy away from telling people this important fact of my life partially because of how many received the news while I was in treatment. I couldn’t even begin to tell you how many people reacted with “Oh, you poor thing!” “You’re so young!” – even from medical professionals who were involved with my treatment! I know most people who react that way mean well, and probably don’t know what else to say, so I should try to give them a little slack, right? But sometimes it feels like damage control when I let people in on my biggest bombshell.

I don’t want people to feel sorry for me, but I also worry what people think of me when they hear the words “I had cancer” come out of my mouth. Do they think I’m weaker now or stronger? Did this make their opinion of me change or are things still the same? (Just some of the perks of being stubborn and insecure at once.)

It does get easier to tell my story as time goes on, but I still struggle from time to time. I’m proud of how far I’ve come since diagnosis, but that doesn’t mean I want to tell everyone I meet via bullhorn. I’m fairly vocal about my experience online, but will not say a peep to most people face-to-face. Maybe I’m more comfortable with that sense of anonymity…along with the fact that I don’t have to actually say “I had cancer” with my mouth. Words have always come more easily to me through writing rather than speaking.

Cancer can be a prickly subject even if you’ve been “out of the woods” for a while. It’s okay to still get nervous a year, five years, or even ten years later. You have the right to tell people on your own terms and in your own time. If you want to go around wearing your newest cancer awareness swag and drive everywhere with a bumper sticker ribbon on your car, go for it. If you’d rather retweet other people’s words about having cancer, that’s great. If you’re somewhere in the middle, that’s fine, too. Do what you’re comfortable doing. If people start to pry where you don’t want them to, you have every right to tell them so. Don’t let anyone push you into giving out more information than you’re comfortable sharing.

Welcome Jess!

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Jess!

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I was diagnosed with thyroid cancer in 2011 at the age of 20 while earning my Bachelor’s in Marketing, and I’m currently living cancer- and thyroid-free since 2012. Though I somehow managed to graduate on time in 2013, the transition from cancer patient to cancer survivor is a foggy, lonely memory. I remember constantly wishing I had someone to talk to that would simply just say “Hey, I’ve been there, too.” I’ve made it my personal mission to be that person for someone else. 

I love music, theatre, animals, chocolate, and my high-school-sweetheart-turned-husband. My latest hobby is being terrible at video games. I also make videos on Youtube about beauty, chronic illness and cancer, and a hodgepodge of other things.

Twitter: @jessneedsanap

Tumblr: jessneedsanap

It Should Get Easier

thyroid cancer

Eight years on, I know the drill.

After the interminable wait in the radiology department waiting room, I’m led to a small room with a narrow bed next to an ultrasound machine.

I dutifully wore a v-neck sweater so I wouldn’t have to change into a gown. After removing my necklace and earrings, I lay down on the bed, pillow positioned under my shoulders to maximize discomfort and neck accessibility. Unlike the (sometimes) happier sonogram rooms of obstetricians’ offices, this room features no screen on the wall with which to follow along – not that the angle of my head and neck would allow for screen watching anyway. I stare at a spot on the ceiling behind me.

As the ultrasound tech preps the computer, he asks the same questions as those before him:

“Have you been here for an exam before?”

“Yes.”

“Why are you having this sonogram?”

“Thyroid cancer.”

“When was your diagnosis and your thyroidectomy?”

“November 2007. January 2008.”

January 2008. January 2, 2008, to be specific. Eight years ago this month. I’ve probably had at least 25 neck ultrasounds in the time since.

This process should get easier. But it hasn’t, not yet. I don’t know that it ever will, now.

This is technically a routine test, the sonogram that I get twice a year before meeting with my endocrinologist. My last many such sonograms give me no reason to believe that this one will be anything out of the ordinary.

But as I lie on the bed, my head craned up and to the left as the warm ultrasound gel is applied and ultrasound tech slowly moves the gizmo along the chain of lymph nodes under my right ear, I can’t help but wonder what if. What if this is the time that the trend of “nothing to worry about here” changes? What if rather than the radiologist’s reading of “no measurable change” I receive a report of “more follow-up needed”?

I remember that in my haste this morning, I didn’t give my son a kiss goodbye. Why didn’t I give him a kiss goodbye? Why did I rush?

The ultrasound machine beeps as the tech clicks, registering a picture for the radiologist to assess. I never know whether to worry about the number of clicks and beeps. Do more of them mean there are more potentially suspicious lymph nodes in the pictures? Or do they simply mean that I’ve gotten an especially thorough technician?

Sonography is both an art and a science, my doctor has reminded me. What one sonographer picks up in one exam, the next may not see. Instructed to turn to the right, I stare at the clock on the wall and the minutes tick by. Have I gotten a particularly artful technician today? Or a new and inexperienced one who needs more time to determine what he’s seeing?

I can’t know the answers to those questions. And I can’t ask questions, because the technicians aren’t supposed to tell you what they’re seeing. (Sometimes they do, anyway. I’ve been on the winning and losing side of those technician diagnostics, and I’ve decided that I’d rather wait for the official radiology report.)

So I keep quiet, waiting for the beeping to stop, to be given the OK to get up, to wipe off the ultrasound gel that has now melted and oozed down my neck, to put my jewelry back on. To be told that my doctor will get the report in a day or two.

To open the door and head back into my regularly scheduled day, already in progress.

I wish this would get easier.

Go here to see what it is like having a CT scan.  Have you had a sonogram before during your cancer survivorship?

8 Years Of No Good Cancer

no good cancer

It’s been eight years since I put on the necklace, eight years since I felt the lump under my skin. And it’s been almost eight years since I first heard those words: “Michele, it looks like you have thyroid cancer.”

It was a Friday afternoon in late November, two months after my wedding and the day before my husband and I were planning to go pick out our Christmas tree. My doctor said those words, and then she made two calls, and just like that, I had appointments with a surgeon to remove my thyroid the day after New Year’s and an endocrinologist to manage my care forevermore after the surgery.

My husband and I drove home in mostly stunned silence, but for my confused questioning: “I thought I was doing everything right. I run. I don’t smoke. I eat blueberries, for god’s sake.” I knew all too well even before that day that cancer doesn’t discriminate, but I still never expected that it would happen to me.

My thyroidectomy was a little more than a month later, but on November 30, 2007, I became a cancer survivor. I felt physically just the same as I had the day before — which is to say, completely fine — but my life had been separated into two distinct periods, one before cancer and one after.

A couple of weeks later, I went to my first thyroid cancer support group meeting. I knew by then that thyroid cancer was then, and is now, one of the fastest growing cancers, particularly among women in their 30s and 40s. More than 60,000 people will be diagnosed with the disease in 2015; most of them will have papillary thyroid cancer, the same type that I did. Most of us won’t die of thyroid cancer, but it will be with us, in some form or fashion — via daily drugs to compensate for our missing thyroids, quarterly and yearly lab tests, the worry when we find an unusual lump — for the rest of our lives.

But there was a lot more that I didn’t know that day. I didn’t know that the radioactive iodine treatment I’d receive to destroy the thyroid tissue that my surgery left behind would damage my salivary glands and leave me with permanent dry mouth. I didn’t know that that treatment wouldn’t kill all the cells, and that just two years later, another cancerous nodule would grow in the same spot that the first one did, requiring another round of treatment. I didn’t know how to help my family and friends manage my diagnosis and treatment and all its aftermath.

I didn’t know that too many people — some doctors included — continue to think, and to tell thyroid cancer patients, that thyroid cancer is “the good cancer.”

There is NO good cancer.

I haven’t defined myself by cancer in the last seven years, but that diagnosis changed my life. Some of those changes have been tough ones; I’ll never take even a routine bloodwork appointment lightly again. Other changes have been for the better. The word “cancer,” even when it’s preceded by “fully treatable,” has a way of hammering home the message that life is short.

I kept up my blueberry-eating habit, but I also traded in a stressful job for one that’s closer to my true loves of writing and editing, with more time for the people and priorities that matter most to me. That change altered my career trajectory — for the good, I’d argue now, especially as I look at my two kids, both born since my recurrence. I’m not sure I would have made it without the nudge — no, the kick in the butt — that thyroid cancer gave me.

It’s been five years now since my last round of treatment, and I’ve pivoted to figuring out life after cancer, though “after” implies a greater level of completion than I feel. I still have a lot to learn about thyroid cancer and what it means for me and my family — lessons I hope I’ll have a lifetime to learn. In the meantime, I’m proud and grateful to call myself a survivor.

Find out more about thyroid cancer, including how to conduct your own neck check, as well as information for patients and caregivers, at the Thyroid Cancer Survivors Association.

Michele is a wife, mom of two, cancer survivor, and writer living in Washington, D.C. She blogs about life after cancer and infertility — as well as random musings on life as a transplanted Bostonian, a devoted fan of the Red Sox, and an infrequent and slow runner — at A Storybook Life. You can follow her on Facebook and Twitter.

Have you heard the phrase, “you have ‘the good cancer'” too?

Welcome Cheryl!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Cheryl!

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I was diagnosed with thyroid cancer in 2014 at the age of 33.  When cancer enters your life, you have no choice but to let it in…and then declare war and find a way to rid yourself of that uninvited and unwelcome house guest!

I’m not only a cancer survivor, I’m so much more than that.  I’m a wife, a mother, a daughter, a sister, a friend, a full-time employee, etc.  My Mom and my husband have been my primary caregivers.  Add in my 4 children (ages 11, 7, 5, and 2) and a couple of best friends and you have the basis of my support system.

My family is my life. I love finding new activities for us to do, new places to explore, and new adventures for us to experience.  In my down time I love to read and do yoga.  I’m also a member of an amazing local resource that provides support to people who are living with cancer.  I’m a work in progress and I’m happy for a chance to be able to give back and help others like me.  There is joy to be found in sharing your experiences and making connections with other people who have encountered the “C” word and are striving to survive and find out how to live life after cancer.

Welcome Leanne! – No Longer One In A Million!

Lacuna Loft is excited to continue introducing some guest bloggers!  These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft.  Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit.  Without further ado, here is Leanne!

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“You’re literally one in a million.” That was what my doctors told me, when I was diagnosed with papillary thyroid cancer at age thirteen. My terrible odds were due to several factors: my young age; the aggressiveness of the cancer; the relatively low rate of thyroid cancer at the time (though it’s now one of the few cancers on the rise in the United States). I liked to think “one in a million” also referred to my amazing personality, but my family was good at dispelling any ego I might have had over that!

I fought for four years, through multiple surgeries, radioactive iodine treatments (a treatment unique to thyroid cancer) and the process of stabilizing my thyroid hormone dosage. At seventeen, I was given a clean bill of health, and I’m happy to say I’ve been cancer-free for fifteen years, though there has been the occasional lymph node scare, and the fluctuation of thyroid medication is never-ending.

Since I was a teenager when all of this happened, I didn’t process the experience as well as I might have done as an adult. I’ve spent the last several years thinking and feeling through it all, and one of the things I’ve learned is that I don’t want to be “one in a million” in any sense. Those odds are much too isolating; I want to be part of the cancer fighter and survivor community. I’m excited to be here at Lacuna Loft, where I can get to know the amazing “cancer club” here, as well as members of other long-term illness “clubs.”

Speaking of other long-term illness, my life has recently been touched by chronic Lyme disease, which my sister and mother have both battled over the past few years. In addition, my best friend, the one who sat at my bedside after every surgery, contracted breast cancer last year. Long-term illness is a big part of my and my family’s lives, a fact I’ve accepted but not necessarily embraced.

One thing I’ve learned is that I can process all of these life challenges through writing. I have my own blog, Words From the Sowul, where I think deep and search for meaning in life (some might say “philosophize”) from a cancer survivor’s perspective. I’m also currently writing a book about living life with a cancer survivor’s/fighter’s perspective, which Mallory (Lacuna Loft’s proprietress) has graciously agreed to be a part of. If any other cancer survivors are interested in sharing stories of positive life gains associated with cancer, please contact me at leannesowul@gmail.com.

Thank you for welcoming me into the Lacuna Loft community! I look forward to getting to know you all!