Go With the Flow

Posted on: August 25th, 2016 by
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Many people whose lives are affected by cancer or any other serious illness — whether former/current patient or caregiver — often experience depression and anxiety. Psychotherapy, psychotropic medications, EMDR, and guided imagery are just some tools that can be effective at combatting intense emotional stress. These and more options can be discussed with medical professionals.

But another phenomenon effectively decreases or even eliminates stress completely for a period of time. This tool has helped me and many others immensely. It does not require psychotherapy and medications and is easy on the wallet.

It is called Flow.

The concept of flow is the focus of a book by expert Mihaly Csikszentmihalyi called Flow: The Psychology of Optimal Experience. While this post isn’t a book review, I cannot recommend this book more highly. Reading this work was life-changing for me because it made me aware of how certain activities I participate in are highly beneficial to the mind and body.

In a nutshell, flow involves participating in an activity requiring focus and deep concentration where a person invests psychic energy for a period of time. Past wounds and future worries are obliterated; the only thing that exists is the present. Activities can include, but are not limited to, dancing, writing, creating/playing music, knitting, sewing, sketching, painting, and even working at a job that demands great attention.

The more flow one can incorporate in his or her life, according to Csikszentmihalyi, the better the quality of his or her life, self-growth, and exuberant feeling of transcendence: “Without enjoyment life can be endured, and it can even be pleasant. But it can be so only precariously, depending on luck and the cooperation of the external environment. To gain personal control over the quality of experience, however, one needs to learn how to build enjoyment into what happens day in, day out.”

He is spot on.

According to Csikszentmihalyi, flow helps guard “against the entropy that brings disorder to consciousness. It is really a battle for the self; it is a struggle for establishing control over attention.”

Watching television and other passive activities might be enjoyable, argues Csikszentmihalyi, but they don’t create an optimal life experience. Television may bring pleasure, but it does not bring about flow or truly enhances one’s life. And coming from the flow side of things, I couldn’t agree more.

One of the things I often struggle with is focus, thanks to chemobrain. With some tasks, my thoughts are scattered. The activities that give me a sense of flow are exercise, writing, and art. While I love participating in all these activities, art is the one that puts me in the most meditative state and gives me the greatest flow.

I want to discuss my meditative art practice, and you can apply this concept to your own flow activities, if you haven’t already.

Art Therapy

Art takes me to a place where I lose self-consciousness. During the time I draw or paint, my problems and stress “disappear.” All that matters is that particular art project, so much so, that I lose track of space, place, and time. With each brush or pencil stroke, all that matters is the present and the artwork itself.

Losing myself in an art project

Losing myself in an art project

Here’s an example: I start working on an oil painting at 5 p.m. and get so lost in the painting and the resulting reverie, that before I know it it’s 2 a.m., but it feels like just a millisecond has gone by. Each moment I devote to art I am in a meditative state of absolute relaxation. And even after participating in art, I feel more “together” and focused.

This is flow.

And this meditative state helps soothe my mind and body for as long as a few days after participating in the activity.

Unfortunately, for the past year or so, this vital part of my life has been neglected due to a busy life. Balancing work and family isn’t easy, and I haven’t spent enough time with the activity that brings me the most flow — art.

Paints

That’s going to change. From now on, I plan to better integrate art into my life. Truth is, no matter how busy I am, I must make time for art — there’s always some time for art — in order to enhance my life with flow. My mind is now conditioned for art-related reverie: all I have to do is watch my daughter create a painting, and waves of relaxation overcome me.

This is why I understand why adult coloring books are all the rage. These books promote flow. I’ve purchased a few and color with my daughter, and I experience reverie while focusing on the task of coloring.

Flow 3

To me, flow is about functioning and managing stress better. To cope with stress, we need to enhance our own quality of life. If we can create flow in our lives, we can better deal with the stresses life has to offer.

What activities relax you?

Have you ever experienced flow? If so, what activity/activities have prompted this phenomenon?

The first draft of my latest art project

The first draft of my latest art project

Flow 2


Six Mistakes to Avoid as a Patient

Posted on: August 18th, 2016 by
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I’ve been thinking a lot about medical-related mistakes.

Not mistakes that doctors make, but those that we patients sometimes make.

While being diagnosed and treated for a devastating disease, patients can and do make mistakes. After all, a serious disease puts us in a hurly burly of medical decision-making and is tough medicine indeed. Now add to the mix one’s upbringing, world views, psyche, and peer pressure, among others. With so many factors affecting our decision making, it’s no surprise why our actions might lead to mistakes.

I made my share of mistakes as a cancer patient. After meticulously weighing my options — the way one might weigh objects on a scale — I would make my decision. Many of my choices were spot on. But….

Other times, I made mistakes.

Most of these mishaps could have been avoided, and so I’m sharing them with you. Here, then, are my top six mistakes to avoid when being a patient. I should know: I’ve made all of these mistakes, some repeatedly. These are not listed in any order of importance.

Speak up, don’t tough up, to medical professionals. A patient needs to inform doctors and nurses how he or she is really doing, physically and psychologically. Telling doctors you are okay when you are not is, well, not okay.

This was a huge hurdle for me, over which I tripped and left a trail of mistakes. When a doctor asked me how I was doing, I often said “fine” when I was not fine.

I initially lied to my doctors for a variety of reasons. I found myself trying to please the physicians and not wanting to bother them.

And I was prideful; I was always tough and strong and wanted to impress upon myself and my doctors that I had an iron-clad will and resolve. I come from a hardy family that deals with life’s problems through Spartan steely resolve and independence, stubbornness, and stoicism. A family that picked itself up by its own bootstraps when times got rough.

That’s why I decided to stay quiet about the horrific side effects from chemotherapy and radiation simultaneously. But these treatments were tougher than me. The truth is, doctors cannot read minds, and I got to a point where I admitted to my oncologist that I was ill.

Believe it or not, he was the first person who taught me to speak up to doctors. As I state in my book, when I finally told him I was sick, he told me that if I wasn’t feeling well, he needed to know about it. A nurse concurred by saying “If you need medication to alleviate the symptoms [of treatment], then you have to help yourself.”

Once I opened up to doctors how I was feeling physically, then I started telling them how I was feeling emotionally. And it led to a close relationship with my physicians that has lasted to this day. I remember telling my oncologist that I was stupid — when saddled with chemo-induced cognitive dysfunction, also known as chemobrain.

He held my hand and told me I was intelligent. This action meant the world to me and fostered a higher level of patient-doctor trust.

Reach out to others. I was also prideful in this arena. Other than regularly confiding in my brother and aunt, I initially did not reach out for emotional support. With their encouragement, I found myself walking through the doors of Gilda’s Club and calling the American Cancer Society. And these organizations helped me immensely, making me feel less alone.

Don’t rely solely on the Internet. I found that searching on the Internet via Dr. Google was a big mistake and often, after reading about worst-case scenarios, it’s no wonder why I was hysterical as I turned off the computer. I’m not saying patients shouldn’t research and get informed about their condition(s), but the Internet is a double-edged sword — an amalgamation of good information and deceptive information.

Don’t rush to make a treatment decision. While you don’t want to wait a long time to begin an action, you might have more time to think on a treatment plan than you believe. Oncologist Dr. Death tried to rush me into treatment options that, as it turned out, were wrong for me. Rushing into his treatment plan would have been detrimental for me.

Don’t compare your treatment to someone else’s. Truth is, illness is like a fingerprint, and a treatment that is excellent for one person might not be great for another.

Stay away from unsupportive support groups. Many support groups are just fine, but others can be downright harmful. At first, my support group seemed excellent, but as time passed, the individuals in the group did me more harm than good.

When it comes to unsupportive support groups, be willing to pull the plug.

These are just some of the mistakes patients should avoid, if possible to navigate the road ahead. I’ve just tapped the surface of the common mistakes patients make. Now I’d like to hear from you.

The Road Ahead

Is there anything that you would add to this list?

What is a mistake or mistakes that you made as a patient?


Self-Love, Self-Care

Posted on: August 11th, 2016 by
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Last week, I participated in a #patientchat Twitter chat centered on what having a “quality of life” means to each of the participants. And that got me thinking about what constitutes a good life.

For me, quality of life is defined by self-love and self-care.

Of course, carving out a quality life is an individual and personal journey. But I thought I’d share what I view as a quality of life for me. These are not discussed in any order of importance. And I would like you, dear readers, to feel free to share in the comments section what having a quality of life means to you.

Through the dusty travails of life, I’ve learned that self-love is intertwined with self-care, and these components translate to a quality life.

Attending to my own needs — as long as they don’t impinge on others’ needs — helps me. I often turn to writing and art, which are so cathartic for me, even during stressful times. Exercise enhances my life tremendously. Although I don’t always want to put on my swimsuit or sneakers, when I go for a swim or a walk, I’m calmed by waves of relaxation. When I walk — whether on a nature trail or in the neighborhood — I am mindful of the beauty that surrounds me. When I sketch and paint, I experience a meditative reverie known as flow. I want to say a lot about flow, but that will have to wait for a future post.

Nature Trail

Regular warm baths relieve me of physical and spiritual aches and pains. I occasionally get massages, also an excellent source of self-love and self-care.

Making PTSD manageable is a day-to-day accomplishment. I have some dark days and dark nights, but overall, most of my time is filled with contentment and positivity. This is due to many factors, namely great psychology professionals, medications, keeping busy doing things I enjoy, and nurturing myself in many, many ways.

Setting boundaries has also proved invaluable. Nowadays, in the world of overscheduling ourselves and our children, I must carefully limit how many play dates we have, how many structured activities my daughter should participate in, and how many social events I get involved with. A quality life includes spending precious one-on-one time with my daughter. Fun, love, and mutual respect are at the heart of our lives, and that translates to a great quality of life.

Ari and flowers

Ari Swimming

In the scheme of life, childhood occurs in a nanosecond. So I “slow down” time by savoring each moment I spend with my daughter. Time still goes by fast, and she’s growing up quickly, but at least I savor each nanosecond as if it were an hour. I treasure each parenting moment and all her accomplishments.

Setting boundaries has also proved invaluable when dealing with toxic people. Our lives have no space for these individuals who are intent on making us as miserable as they are. We have a no-bullying policy when it comes to choosing our friends. Thus, we have effectively weeded out the toxic few who are not true friends.

I could go on and on about all the wonderful ways to create a great quality of life for me, but I’d rather hear from you, readers. Now it’s your turn.

What enhances your quality of life? How do you define a quality life? I would love to know.


‘Everything Happens for a Reason’

Posted on: August 2nd, 2016 by
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I have many pet peeves in Cancerland.

During my diagnosis and treatment, people told me to stay positive. Well, this advice harmed me, as I needed to cry and feel miserable. Those who told me to stay positive negated my fears and denied my feelings.

Other individuals spouted that God couldn’t give me more than I could handle. Wrong on two counts: God did not give me cancer, and yes, cancer was more than I could handle.

Enter the next pet peeve that well-meaning people have told me countless times regarding my bad fortune in having cancer:

“Everything happens for a reason.”

Ugh.

This distorted way of thinking is unacceptable.

The subtext behind “Everything happens for a reason” is that a cancer diagnosis is meant to make us chosen lucky ones better people and that cancer is the catalyst to self-improvement.

This trite saying also implies that there was a some divine power involved to give us cancer as some sort of crucible designed to test our mettle. So because I survived thus far, did I prove brave enough to endure? Did I pass this test?

And do people who die with metastatic disease fail the test?

I think not.

This is what I have to say to those in the “Everything happens for a reason” camp. Think before you offer empty platitudes and invent a mythological narrative for a cancer patient.

Cancer is not designed to make us better people.

Cancer isn’t a divine will thrust upon us.

Cancer happens because…..

Well, it just happens.

My advice to those who don’t have cancer is this: Instead of offering harmful platitudes, offer cancer patients what they need: a listening ear, preparing meals or babysitting patients’ children, and, of course, a hug.

It’s enough.

Flowers

What platitude(s) is your pet peeve(s)?

What insensitive comment(s) were/are you told as a cancer patient?


Party’s On!

Posted on: July 23rd, 2016 by
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While my book, Calling the Shots in Your Medical Care, officially launched July 5, I figured, what is a book launch without a party? I will be hosting a book launch party on Saturday, July 23, which will include a reading, discussion, and a book signing. Refreshments will be provided.

If you are in the neighborhood, you are welcome to stop by. The party will take place at Bespeak Studios, located at 737 W. Wrightwood Avenue, Chicago IL 60614, from 3-6 p.m.

I have my special pen ready and willing to sign autographs.

As the book launch party nears, I find myself filled with so many emotions — joy, anxiety, and determination, just to name a few.

I want this to be a great event for my guests.

I want to sell books, of course. What author doesn’t? But, in the end, I know success is not measured by the number of books I sell or the number of books I sign.

Success is measured by how we help our fellow human beings.

And I am hoping that my new book will do just that.

Book

Even if you are too far from Chicago or are in the Chicago area but unable to attend the party, I still like to think of you, dear readers, as important guests of the party. I will think of all the wonderful people whose paths crossed mine, as I embark on this new endeavor.


15 More Random Facts About Me!

Posted on: July 15th, 2016 by
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Last year, I participated in a 15 Random Facts About Me blogging challenge, where I posted random facts about me. I got the idea from Nancy Stordahl’s 15 Random Facts & A Blogging Challenge Too! So when Nancy posted 15 Random Facts, Round Two, & Another Blogging Challenge! this week, where she shared 15 more pieces of information about herself, I just had to follow suit. And, as Nancy has done, I’m putting a challenge out there for you, dear readers, to blog or share 15 (or less or more) things about you in the comments section or in a blog.

Here are 15 random things to know about me:

1. The most exciting fact right now is that I have launched my book, Calling the Shots in Your Medical Care, which is about how to cope in a medical system fraught with difficult doctors and administrators. However, the book doesn’t bash all medical professionals, just the unprofessional ones.

2. I am a Type A personality, which means I’m a deadline-driven perfectionist. This is a good characteristic in some ways, but it also has its drawbacks. Wanting to do everything perfectly can be and has been crippling. Luckily, I have made a concerted effort to become a little more type B-ish and care less about being perfect because, let’s face it, nobody is.

3. I’m an extroverted introvert, whatever that means. I can be shy, but I also can feel comfortable around many people I don’t know.

4. Until recently, we had a HUGE goldfish. At four years old, Goldilox had outgrown her 40-gallon tank. If you don’t believe me, just look at the picture below. Luckily, this fish has a happy outcome. Our pet sitter has a pond, and she agreed to take the fish.

5. I have a passion for grammar and have been known by my students as the “grammar Nazi.” I take that as a compliment.

6. I still have two baby teeth, my central bottom incisors. Thank goodness nobody can see them when I smile.

7. I enjoy going to charitable events for good causes.

8. I happen to live not far from a mosquito sanctuary. That’s right! There is at least one sanctuary for mosquitos that I know of. Are they endangered? WTF?

9. From ages 5 to 12, I took tap dancing lessons and loved every minute of it.

10. When I was in junior high school, I attempted to play the flute in the orchestra. I blew out more air than I took in, which led me to faint — repeatedly.

11. I switched from the flute to art class. Better fit.

12. Throughout high school and college I played guitar and loved it. I’m not naturally musical (see flute incident above), but I love music. Also, breathing technique is not an issue with the guitar, so no passing-out incidents.

13. I love sunsets.

14. I love books. Unfortunately, I have more to-read books on my book list than I actually can read.

15. Writing is so therapeutic for me. I’ve wanted to be a writer from the age of 5, maybe even earlier. I want to write another book or two or three or more. I am thinking of a memoir or even a novel or series of short stories. I’m not sure which direction I’ll go.

There you have it: 15 more random things about me. I hope you enjoyed reading this!

Goldilox in her tank.

Goldilox in her tank.

Goldilox in the pond (she's the large one)

Goldilox in the pond (she’s the large one)

What are some random facts about yourself?

I would love to hear about you.


Calling the Shots, the Book, is Here!

Posted on: July 5th, 2016 by
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I’m excited to announce that my book, Calling the Shots in Your Medical Care, is now available!

Calling the Shots was intentionally released around the US’s July 4th holiday because the book is all about declaring one’s independence:

* From doctors who do not have a patient’s best interest at heart,
* From unsavory medical personnel, and
* From abusive records departments who do not have a stake in the patient’s health.

The book is deliberately short and easy to read because, let’s face it, when a medical crisis occurs, few people want to read through large tomes that can cause information overload. Patients going through a crisis deserve more.

Calling the Shots is a call to action.

The book encourages patients to speak up, rather than give up.

The book helps patients distinguish between good and poor physicians.

The book encourages patients to stand up for themselves.

After all, if patients don’t advocate for themselves, who will?

For more details on the book, see the “Calling the Shots,” The Book tab and/or read health advocate Martine Ehrenclou’s review here.

To purchase Calling the Shots in Your Medical Care, click here. A Kindle version will be available soon.


Cancer Harbors: A Safe Harbor for Cancer Survivors

Posted on: June 30th, 2016 by
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I rested my head against the window, as the train car’s soothing motion lulled other morning commuters to sleep. I was uneasy: It was my first day back to work after cancer treatment had ended, and I was officially a survivor. While I was lucky to have survived thus far, I hadn’t had a clue about the complexities of living after cancer diagnosis and treatment. So, I just stared out of the window, wondering, “What just happened to me?” and “How do I go on with a ‘normal’ life”?

Resources were readily available to me as a patient, but not as a survivor. I soon learned that the stress of surviving cancer couldn’t be remedied by running for pink ribbons nor any quick fix such as speaking briefly with a cancer counselor. Seeing my doctors for follow-ups just reminded me of being sick and panicked about returning to the places that reminded me of illness.

I wish a great resource such as Cancer Harbors had existed then.

***

Cancer Harbors is a new online service that helps people who’ve had cancer navigate survivorship. According to the organization’s website, the service “provides you with the information and skills to create your personalized plan to restore your well-being after cancer treatment based on your priorities, lifestyle, and preferences. It’s not a cookie-cutter survivorship plan at all. It’s a plan for living life well.”

Founded by Alene Nitzky, a personal trainer and nurse with oncology expertise, Cancer Harbors is designed to help survivors — whether they are just coming out of treatment or have been out of treatment for awhile. Membership includes multiple videoconference sessions with a professional cancer recovery coach, access to monthly survivorship articles, a discussion forum, as well as a quarterly newsletter and exercise videos.

“The program has value and many options,” says Nitzky, emphasizing that this service is especially helpful to those communities with no or limited survivorship support options. “With the video conference feature, people can just drop in and say, ‘I’m having trouble,’” says Nitzky. “[The survivor] is face to face with a professional who has a feel for [the survivor’s] concerns and who is right there to answer questions and offer a variety of tools.”

“I help cancer survivors get to the point where they can reach out and get what they want and need,” says Nitzky.

As a survivor, I stand behind this service. After all, when cancer survivors are feeling derailed, Cancer Harbors helps them get back on track — not only in terms of survivorship, but by helping survivors live life on their own terms.

To find out more about Cancer Harbors, click here and/or e-mail Alene Nitzky at info@cancerharbors.com.

If you are a cancer survivor, how has survivorship been going?

Did you/do you have a survivorship plan in place?


Re-Acquainting Myself With the Breast Self Exam

Posted on: June 16th, 2016 by
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Once upon a pre-breast cancer time, a physician paid me a high compliment. “You do better breast exams than most doctors,” he said. And I think he was right. Every month I performed the same ritual: a thorough breast self-exam, including the look-at-your-breasts-in-the-mirror test.

Although I always dreaded the idea of something possibly being wrong, I examined my breasts thoroughly and regularly.

Until a breast self exam (BSE) saved my life.

***
After I found an odd, but ever-so-subtle dimple during an anything-but-routine BSE, I made the dreaded appointment with my gynecologist, who ordered a diagnostic mammogram, which showed an abnormal mass.

The rest is history. Breast cancer. Two lumpectomies. Chemotherapy. Radiation. Aromatase Inhibitors. Constant monitoring. False scares. A mass found via MRI in the same breast five years after diagnosis. Scared shitless. Another lumpectomy to remove the mass. Benign this time. Fought for a bilateral mastectomy with DIEP flap reconstruction. Done. And done. My “healthy” left breast loaded with pre-cancerous cells.

Turns out, the bilateral mastectomy saved my life.

I’ve been a medical success story thus far, and I am grateful. Before and after surgery, my mastectomy surgeon emphasized the importance of continuing to do BSEs, as it’s impossible to remove all breast tissue during the mastectomy.

And now I have a confession to make. You can probably guess what it is.

I haven’t done a BSE since my bilateral mastectomy and reconstruction.

I’m too afraid of finding something.

Thick fear suffocating me.

I’ve let my fingers do the walking way too much for my taste. So I’ve let my doctors’ fingers do the walking instead.

But I realize that my dependence on my doctors’ breast exams must be over. I need to once again take ownership of my health in this arena.

So, here I am, a BSE newbie again, learning the unfamiliar terrain of breasts that are mine-yet-aren’t-mine.

My first post-mastectomy BSE is just around the corner. A corner I must unwillingly turn.

Doing a BSE will be emotional. I weep just thinking about it.

But being proactive is my only choice.

I must go forward.

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Do you do/Have you done breast self exams?

How was your breast cancer discovered?


Boycotting National Cancer Survivor’s Day

Posted on: June 2nd, 2016 by
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National Cancer Survivors Day is on Sunday, June 5.

And I won’t be celebrating.

Sorry to sound like a bitter ingrate, but I take issue with a day that celebrates cancer “survivors” and leaves those with metastatic cancer in the dust of victory.

In fact, I take issue with the word, “survivor.” According to Dictionary.com, the word “survive” means: “to endure or live through (an affliction, adversity, misery, etc.)” and “to get along or remain healthy, happy, and unaffected in spite of some occurrence.”

Does this definition fit those with metastatic cancer? Most certainly not. For those with mets, cancer is more than just an adversity to be overcome. And, let’s face it, people with this disease don’t necessarily remain “healthy, happy, and unaffected.”

The National Cancer Survivors Day website has a page called “Who is a Cancer Survivor?” It lists several criteria that “defines” who makes the cut as a survivor. Here’s one gem from the website:

“If you’re living with cancer as a chronic disease – you’re a survivor.”

WTF?

Maybe I missed something here, but since when is metastatic cancer a chronic disease? Such deceptive, veiled language pretties up the ugliness that is cancer. Here’s another definition of “survivor”: “If you’re currently in active treatment for cancer – you’re a survivor.” I think the people who put the website together just threw this in in a feeble attempt to cover those with metastatic disease.

And here’s my favorite: “If you’ve beaten cancer and been declared cancer-free – you’re a survivor.” Ah, the old tried-and-true favorite: the battle metaphor stating that if one is NED, they have won the battle against cancer. Nobody I know has “beaten” cancer, yet the battle metaphor lives on.

Let’s be real: These feeble definitions of cancer survivorship also don’t fit for those people who lived through cancer and are currently NED (no evidence of disease), the so-called “survivors,” people for whom the national celebration is really aimed at.

People like me.

***

I’m under the survivorship umbrella, but it’s a raging shit storm out there.

Don’t get me wrong: I’m glad I am NED, but the jury is still out on whether I survived cancer according to the aforementioned National Cancer Survivors Day criteria. Regarding cancer survivorship, a hip hip hooray feeling eludes me. The bridge toward survivorship and greener pastures is rickety.

Here’s a synopsis of my post-cancer life. Most of the time, I live in a state of gratitude. I paint and write and read. And take nature walks, appreciating all that nature has to offer.

But while I’m grateful to be alive, I’m not grateful I had cancer.

I will never be grateful to have had cancer.

Cancer is ugly and devastating. To me, survivorship is akin to living under the Sword of Damocles. It’s like being placed in Edgar Allen Poe’s story of terror “The Pit and the Pendulum,” where the narrator finds himself facing a pit where he will fall into a never ending abyss, as the walls literally close in on him bringing him closer and closer to the pit.

I can only speak from my own experience.

Survivorship has been exceedingly difficult for me. Between the panic caused by oncology appointments and intense scanxiety that only those in the cancer world can understand to PTSD to fatigue to chemobrain to cancer paranoia — survivorship pretty much sucks.

Yet, despite all this, I know how lucky I am to have survived. I don’t need National Cancer Survivors Day to remind me that I’ve beaten cancer.

Truth is, cancer has beaten me up pretty badly.

Path

Do you like the word “survivor”? If so, do you consider yourself a cancer survivor?

If so, how has your survivorship experience been?