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First of all, Dear Readers, I remind you that this blog is not intended to be a source for medical advice. If you have questions or concerns, always speak with your doctor.

So, what do you do if your breast implant ruptures and how do you even know for sure that it has?

Let’s talk about it.

Note: Much of this info applies to women who have chosen implants for cosmetic reasons, nothing to do with breast cancer. For obvious reasons, my focus is for women who’ve undergone breast reconstruction following a cancer diagnosis and mastectomy or those choosing prophylactic mastectomy and reconstruction using implants.

If you chose, or plan to choose reconstruction following your mastectomy and you decided on breast implants, or if you’re thinking about them, it’s important to understand what your followup plan should be.

Implants are not a one-time and then you’re done type of deal. They are medical devices and not intended to last a lifetime. Be sure to discuss this with your care team too. Again, there will be followup. Ask about it.

The FDA recommendation is that you have a breast-imaging MRI at three years following initial placement and then every two years after that.

Here’s another example of “do what I say not what I did”.

Although to be fair, some doctors do not believe all the surveillance is necessary. Regardless, talk to YOUR doctor about YOUR followup plan and be sure you’re both on the same page.

Forever the procrastinator, I am definitely not the poster woman for doing this right as I didn’t have an MRI to check on my implants until just recently, and it’s been over eight years since mine were placed. Oops…

Of course, if you develop symptoms of a rupture such as breast pain, redness, hardness, swelling, change in breast size or anything else that concerns you, don’t wait.

Talk to your plastic surgeon right away to discuss.

When an MRI is recommended, be prepared for an unpleasant experience. Mine was anyway. I could write an entire blog post about that, but that’s for another day.

Let’s just say, when the ordeal was over, I sat up, and immediately said to my technician, “I’m going to cry now”.

“I understand, go right ahead,” was her response.

And I did. (Not due to pain, so don’t worry, it doesn’t hurt.)

Apparently, MRIs with implants take longer, in some cases, a lot longer.

There are two kinds of ruptures, intra-capsular and extra-capsular.

An intra-capsular rupture means silicone gel has escaped through a hole or tear but is contained within the scar tissue capsule that has formed around the implant. (This scar tissue formation is normal.) This sort of rupture generally starts off anyway with no symptoms. This is called a silent rupture.

Silent ruptures are a primary reason for those aforementioned FDA guidelines.

An extra-capsular rupture means silicone (amount varies depending on size of rupture) has made its way past the capsule. If and when the gel moves to other parts of the body, this is called gel migration. Symptoms are more likely with an extra-capsular rupture.

If you have saline implants, a rupture generally means deflation has occurred. This is easier to detect visually as the breast will appear smaller over a relatively short time span, usually in just days.

It’s important to note that there is debate about the safety of silicone gel once it’s leaked out and even if it hasn’t. (This particular post isn’t about that.)

In addition, you’ve likely heard about textured silicone implants being banned in Europe and Canada. Breast implant complications are still being studied and the controversy likely isn’t going away anytime soon.

If you’re concerned about breast implant safety, be your own best advocate. Do your research and ask questions of your doctor until you’re reasonably satisfied with the answers.

I’m planning a post on Breast Implant Illness, so stay tuned for that.

So now, let’s say you’ve had your breast imaging MRI and things look good. Yay! You’re good to go for another couple years.

What happens if your MRI shows a rupture?

This is where the story circles back to yours truly. Yes, my MRI spotted a rupture. We have no idea how long it’s been there. (Because, you know, that procrastinating thing…)

This is why it’s called a silent rupture. No symptoms. Who knew?

It’s also just one more reason why this breast cancer shitstorm is NEVER OVER.

Hence, you might need to allow yourself to feel upset that you must deal with this particular mess again. Feelings of fear, anger and yes, grief for your original female parts might resurface. They have for me anyway.

So, I’ve been trying to cut myself and Dear Hubby, too, some slack.

You might want to read, Nipple Envy and/or Things We Aren’t Supposed to Say about Mastectomies, Reconstruction & Breasts.

If a silent rupture is detected (or a not silent one), the general recommendation is for the implant to be removed. A silent rupture is not considered an emergency.

(Not that this makes us feel much better about it.)

Some doctors say it’s okay to take the wait and see approach for awhile. Some might disagree with that approach.

Regardless, it’s important to carefully consider and think through all your options.

So, what are they?

  1. Remove the implant(s) and be done. Going flat is a reasonable and good option for many. It might even be the best one for you.
  2. Replace the implant(s) with similar-size implants or smaller ones (I found out the latter is involved, but I’ll spare you the details here) and then carry on.
  3. Consider an autologous procedure if you’re a candidate. This means a reconstruction procedure using your own body’s tissue. (I’m currently researching the DIEP flap procedure.)

I am now in information-gathering mode about ALL my options. (Plastic surgeon #4, here I come.) This go-around, I plan to take my time. You might think what to do would be a relatively “easy” decision.

But for me, it’s not.

FYI, #2 – the swap-out deal, is not quite as quick and easy as you might think, even if you choose same-size implants. Or not as quick and easy as I thought anyway. It’s still surgery. There are still drains. There is still healing required. There is still recovery time needed. Ugh…

What to do at this juncture, too, is all about personal choice and shared decision making with your doctor.

If you experience an implant rupture, what you decide to do is up to you and you alone.

At some point, I’ll let you know what I decide.

To get more articles like this delivered weekly to your inbox, Click Here! #KeepingItReal

If applicable, did you choose breast reconstruction or did you opt out?

No matter what your decision was, why did you choose it?

Do you have breast implants and if so, do you understand your followup plan?

Have you had an implant rupture?

Featured image above via Wikimedia Commons

If you like this post, why not share it? Thank you!

The post What If Your Breast Implant Ruptures? appeared first on Nancy's Point.

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It’s a pleasure to share the next #MetsMonday featured post. If you’ve missed the others, click here and work your way back. They are all so good. This one comes from Emily Garnett. She shares about her MBC diagnosis and the difficult topic of progression. Granted, it’s not an easy read, but it’s a must-read.

Thank you, Emily, for sharing your voice on Nancy’s Point. Thank you, Dear Readers, for reading. Don’t forget to leave Emily a comment or ask her a question.

The In-Between Time

by Emily Garnett

I was diagnosed with metastatic breast cancer in November 2017.

My diagnosis came after a flurry of biopsies, scans, then more scans, another biopsy, and innumerable meetings with members of various care teams.

By the time I had received my first Lupron injection, putting my body into chemical menopause, I had been poked, prodded, injected, scanned and re-scanned so many times, it made my head spin.

I was exhausted and traumatized, handed a ticket to a new life with a cantankerous co-star—incurable cancer.

Prior to my diagnosis, my metrics for productivity tested and challenged me. As a former distance swimmer and marathoner, I existed to find and test my limits both physically and mentally. I found joy and satisfaction in the exercise of redefining and expanding my boundaries.

Even as a new mother, I enjoyed the challenges of early childhood and looked for new adventures on which I could embark with my son.

We travelled cross-country by airplane and took trains to visit family and friends in other states from the very beginning of his infancy and well into toddlerhood. These excursions left me exhausted and depleted but also satisfied with the opportunity to find challenges in the everyday existence of life with a baby.

After I was diagnosed, I felt almost catatonic, unable to get out of bed many days.

No one would blame me for my deep depression, my anxiety, but no one else could pull me out of it, either.

My body continued to ache more and more, the physiological changes taking place were the manifestation of my disease, hobbling my body and crippling my spirit. I no longer had the energy to tackle the projects and adventures that my former self would think nothing of handling and then looking for more. My sadness defined me, and I saw my former life slipping away before my eyes.

Gradually, I emerged from my cocoon of grief and slowly allowed myself to re-enter the world.

As I continued with my first line of treatment, time crept up on me until I was preparing for my first PET scan to measure my disease response to the medication. Those scan results surprised all of us and indicated that my disease was not only stable, but that the amount of cancer in my body had reduced dramatically. Many previously metabolically active bone lesions were subdued—some had even healed themselves.

It was unbelievable that I could possibly respond so well and so quickly. My internal light bulb began to flicker once again, and I could see, in that dim light, flickers of hope.

As winter warmed to spring, and spring blossomed and grew into summer, my energy levels renewed with the changing seasons.

The warm weather served as a catalyst for me to reclaim some of the personal momentum I had lost, and I began to feel like myself again. With that renewed energy, came the renewed impulse to push myself, to drive forward again as I once had.

I barreled ahead, throughout summer and into fall, falling prey to the intoxication of busyness.

While my scans remained stable, I felt less so, and that instability began to manifest in a feeling of recklessness. I felt my energy levels slipping, and my ability to push myself waning. Still, I carried on as if my metastatic breast cancer diagnosis was a mere blip on the radar, a hurdle that I had surpassed.

Further cracks in the facade began to appear, punctuated by a scan showing progression.

My treatment was no longer working, and suddenly, I was faced yet again with the pain, trauma, and struggle from the previous year. I had clawed my way out only to fall back into the bucket, not recognizing the demands of my disease and implementing necessary changes in my daily life.

I shifted again, and began a new treatment—this time a clinical trial.

My life has slowed down significantly since this pivotal time. This trial came with its own set of rigors—complicated lines of communication, increased testing, and frequent clinical visits. What was supposed to be scans every eight weeks quickly turned into every four.

I was only a couple of months into the trial when I noticed some unusual headaches cropping up. Another scan revealed two small lesions and laid bare one of my greatest fears. The cancer had spread to my brain.

A few weeks after, I underwent brain radiation, more bad news. It had spread further, this time to my lung and liver. And so, I shifted once again, off of the trial and onto my first line of chemotherapy.

My life now plays out in the in-between times—the gaps between scans and treatment cycles where relative stability can again be found.

But even after I let out the strained breath I hold between tests, scans and results, the nagging feeling of something else never fully leaves.

I wonder when the next shoe might drop, when the delicate detente between healthy and cancerous tissues might give way to the ruthless disease that lies in wait within my body silently invading organ after organ.

I am forced to accept that this narrowing of my availability, my energy, and my life expectancy requires me to scale down the demands I place on my time accordingly.

Time feels fluid, fitting years of living, years of memories into days and weeks, into the “months to years” that I have been given.

And yet, it continues to present inflexible constraints on all of us. I cannot speed up my son’s graduation from kindergarten as much as I cannot speed up his graduation from high school, and I am unlikely to see either.

The recognition of such has required me to begrudgingly take on a perspective gained from life with an incurable, terminal illness.  

Time, while precious, is also remarkably inflexible; I can painstakingly plan my time out in four-week chunks, knowing that to anticipate stability beyond that time frame tempts fate.

I will continue to live the best life I can in the in-between time.

Bio: Emily Garnett is an elder law attorney in New York. Following her metastatic breast cancer diagnosis, she turned to writing as a way to utilize her advocacy and community-building skills. When she is not writing, she is spending time with her husband, young son and two cats, and baking her famous chocolate-chip cookies. 

Be sure to check out Emily’s blog and Podcast. Follow her on social media and donate to her fundraising efforts, too, if you’re able.

Emily’s blog:  Beyond the Pink Ribbon

Podcast:  The Intersection of Cancer and Life

BCRF Fundraiser

Facebook page: Beyond the Pink Ribbon

Instagram: Beyond the Pink Ribbon

Do you have a comment or question for Emily?

If applicable, how do you cope with living in the in-between time and/or news of progression or potential progression?

Do you have MBC?

To get more articles like this delivered weekly to your inbox Click Here! #KeepingItReal

The post “The In-Between Time” by Emily Garnett—A #MetsMonday Featured Post appeared first on Nancy's Point.

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Another Father’s Day is fast approaching, and all those ads and displays about what to get dad are hard to miss. I wish I could tune them all out, but that’s pretty much impossible.

This is Father’s Day number three without my dad. Not that the day matters much. I miss my dad every day. But I think I miss him most in spring.

Who am I kidding?

I miss him most during whatever season it happens to be.

“Death is a date in the calendar, but grief is the calendar.”

The above just might be one of the truest statements ever made about grief.

Sometimes we think mentioning someone’s dear one who has died might make the grieving person too sad or too upset.

So, we choose not to talk about their dear one. Big mistake.

If there’s one thing I know to be true about grief (and other tough topics) it’s that not talking about it does not equal not thinking about it.

Talking about a dear one who is missed is usually welcomed and appreciated by the person grieving. And healing.

Don’t hesitate to give someone this gift.

That’s what listening to someone talk about their dear one who has died is – a gift.

Today, I’m sharing a little snippet about my dad from my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person.

You reading this post is you giving me a gift. So, thank you.

After you read it, I would love for you to tell me something about your dad, too, if you want to.

Daughter Number Three

When I was a young girl, I asked my dad once if he was disappointed that cold February day when I was born to get the news he was once again the father of a baby girl.

He laughed, shook his Elvis-like head of thick, black hair and, of course, said no. Still, I wondered how he could not have been a little disappointed for at least an instant back then. He must’ve wished for a son at least once or twice while waiting for me to arrive. But there he was, a young father on a teacher’s salary with three daughters ages four and under.

My dad was a hands-on dad before it was cool. I don’t know how many diapers he changed, but he did “baby sit” my siblings and me all the time, did much of the cooking, was generally the one who took us to doctor appointments, was grocery shopper in-chief and drove us wherever we needed to go.

When I was in high school, I had my dad for a history teacher. It was a small-town school, so there was no one else. At school he was a well-liked teacher. Kids liked him for his quirky mannerisms like looking at the clock every few seconds during lectures and for his sense of humor, but mostly they knew he was fair and genuinely cared about them.

Having your father as your teacher could have been quite an awkward experience for a teenager, but luckily, none of my friends thought much about it or gave me a hard time when I earned my A’s from him.

It felt good to have a father who knew so much about history, told corny jokes, stopped to talk to anyone he met in the grocery store, loved football and ran the scoreboard on Friday nights.

I was proud to be his daughter, even if I was number three.

I am still proud today.

Miss you, Dad. Love you forever.

Happy Father’s Day to all men who love and nurture the children in their lives.

To get more articles like this delivered weekly to your inbox, Click Here!

Share something about your dad (or other father figure), if you want to. And yes, I want to hear from you if your relationship was/is poor too.

Are you missing a dear one this Father’s Day?

P.S. We discovered the photo in the featured image above in my dad’s desk drawer after he died. He had kept it close by all those years. And fyi, I also have a younger brother.

My handsome dad and daughter # 3 – me!

The post Thoughts from Daughter #3 for Father’s Day appeared first on Nancy's Point.

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As you likely know by now, one of my top cancer pet peeves is the expectation out there that somehow cancer miraculously transforms you into a better version of your former self. You know, there are all those life lessons to learn.

Sure, being diagnosed with cancer makes you an unlucky soul, but at least your diagnosis also automatically granted you enrollment into the Cancer Enlightenment Program, which undoubtedly, you will benefit from.

If not, why not?

(The above is supposed to be sarcasm.)

This line of thinking sort of implies that somehow you needed this experience to get your priorities straight.

Again, there are all those life lessons to learn and epiphanies to be had.

If the transformation theory works for you, fine. But for me, all that enlightenment malarkey is total BS.

I started working on this post a couple years ago, so t’s been sitting in a folder for quite some time. (This is actually a watered-down version.) I hesitate to publish certain posts. This is one of them.

Why?

Because it’s a push-back sort of piece that perhaps some will not appreciate. It’s meant to be tongue-in-cheek. Sort of. Not everyone will appreciate my dry humor. Or sarcasm. It’s okay if you don’t.

Don’t take this post too seriously, okay? Then again…

So, you’ve been forewarned.

Enough with the stalling, here we go.

15 shitty things cancer has taught me:

1. I’ve pretty much failed the Cancer Enlightenment Program. Wait, not pretty much. I have failed it.

No grand lessons here. No epiphany. No re-shuffling of priorities. Still me. Not better. Probably worse. But still standing!

2. Being a cancer rebel is still more or less frowned upon. People tend to prefer conformity in (Pink) Cancer Land too.

Stirring things up is still oftentimes a no-no. Don’t make waves is probably the safer course.

3. If it looks like you haven’t moved on, people get uncomfortable. And judgmental. They might even start giving you that raised eyebrow look. (Have you been given the look? If not, be patient. You’ll likely get it.)

Oh sure, you’re allowed a certain amount of time to get over the messy parts, (like a year maybe) but then, it’s time to get on with it, honey. Same deal with grief, btw.

So, at nine years out now, I’ve clearly missed the getting over it deadline. Just one more reason for my big fat “F” in the Cancer Enlightenment Program.

4. Getting your breasts amputated and getting a “free” boob job is still sometimes considered a perk of breast cancer.

Seriously?

I still can’t believe this one.

You might want to read, Ten Reasons Why Breast Reconstruction Is Not a Boob Job!

5. Embrace the pink sisterhood like your life depends on it or else you are doing breast cancer all wrong.

Be strong. Act brave. Keep smiling. Keep your whining to a minimum. Prove you can still do it all. (like you ever could.) And on and on and on…

6. It’s probably best to keep your non-varnished cancer truths under-wraps.

Most people can’t handle the truth. Heck, they don’t even want to hear it.

7. If you refuse to do #6, you will likely be called negative.

So be it. I’ve been called worse.

8. Cancer makes you old before your time.

It just does. And the medical community sometimes isn’t helpful when they no longer know what to do with you, so they start implying that perhaps your long-term side effects and other issues you’re complaining about are probably just normal aging. And when you start realizing they could be right, you feel, well, even older.

(No wonder the elderly often get frustrated. When you’re old, you’re supposed to just suck it up and put up with shit?)

Of course, all this is still better than the alternative.

9. You will likely think of your life in terms of before cancer and after cancer from diagnosis day on out. Or at least I do. Dear Hubby does too.

For some of us, there was also life with breasts and now life without breasts. Pretty sure, deep down Dear Hubby thinks this way too, though he’s too kind to mention it.

Sure, I’ve got a reconstructed chest, but let me tell you, it is nothing like the real deal. Nothing.

10. Cancer is expensive, and I’m lucky to have decent insurance.

I always knew cancer treatment wasn’t cheap, but until you need it yourself, it’s hard to imagine the financial burden.

And then, there is the career upheaval. Another expense of a different sort.

11. Learning your cancer is hereditary sucks.

Now, I not only have to worry about myself, I also have to worry about family members. Cancer sucks. Period.

12. The blame game is still very much alive and well.

All those “did you” questions still lurk.

And now, there are new ones. I call these the “are you now” questions. Are you eating healthier now? Are you exercising more now? Are you still having that glass of wine now? And so on.

(Like I was living recklessly before with no regard to my lifestyle choices and sorta deserved all this.)

13. It’s never over even though many around you might believe, even insist, that it is. Or should be.

My one-word response, mirrors.

14. Cancer brings fatigue.

No need to say more, right?

15. The shittiest thing of all, of course, is that people you care about die from metastatic breast cancer. And the grief is real for those who die that you’ve never met in person too.

Many don’t understand how you can grieve for people you’ve never actually met. But you do. And it’s heartbreaking. Sometimes, I ask myself why I remain online at all.

But then I do. Because I can’t imagine not.

So, there you have 15 shitty things cancer has taught me. I’m sure there are more, but that oughta do for now. Maybe I’ll write a part 2 sometime. Or not.

If you haven’t yet written down some shitty things you’ve learned from cancer, I highly recommend that you do. It’s therapeutic.

I gotta say, writing this post and then publishing it, too, actually made me feel pretty darn good.

Turns out, the Positivity Pushers don’t know everything.

The Cancer Enlightenment Program be damned!

Now, it’s YOUR turn to share one or two shitty things cancer has taught you.

(If you don’t, I’m gonna look bad.) 

It’ll feel good. I promise.

Ready. Set. Go!

To get more articles like this delivered weekly to your inbox, Click Here!

Share a shitty thing or two that cancer has taught you.

Do you sometimes feel pressured to stay positive?

Do you ever feel like you’re expected to “find the good” in your cancer diagnosis?

If you like this post, please share it. Thank you!

The post 15 Shitty Things Cancer Has Taught Me appeared first on Nancy's Point.

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I am eager to tell you about a new research opportunity that some of you might qualify for and want to participate in.

As you likely know, the majority of breast cancers are hormone positive and endocrine therapy is commonly prescribed for this group of patients as part of their treatment plan.

Endocrine therapy is also called hormone therapy. Such therapy includes aromatase inhibitors (anastrozole, exemestane, lestrozole), tamoxifen and a few other drugs.

Many of you are taking one of these prescribed medications and are experiencing unpleasant side effects.

Yes, we’re talking about the drugs we love to hate. And yes, the side effects can be many and quite unpleasant. Okay, downright nasty.

There is a dark side to these medications, for some of us anyway. (Of course, some tolerate their prescribed drugs quite well.)

Some of you were taking one of these medications and have chosen to discontinue due to those nasty side effects. Others declined to even begin.

Some of you feel supported by your medical team when seeking help managing side effects from these drugs and some of you, not so much.

Regardless, this is your chance to let your voice be heard!

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

Now, about the survey…

This survey is open to participants everywhere, including men, who’ve been diagnosed with hormone-positive breast cancer and have had endocrine therapy prescribed for them.

I love the inclusiveness of this study. This is a rarity. The study is open to women, men, any age, any stage (including mets), those currently on endocrine therapy or with a past history of endocrine therapy, and it’s open to participants from any location. Yes, any!

Dr. Deanna Attai is the lead investigator of this UCLA-backed research effort to gather responses from patients like YOU about the side effects you are experiencing from your prescribed endocrine therapy.

As the survey states:

Approximately 25-30% of patients with breast cancer who are prescribed endocrine therapy do not complete the full course of treatment, and some patients never start. Side effects of endocrine therapy are well documented but there is very little literature on the role of the medical team in helping patients manage treatment-related side effects.

I think we can all agree, the latter needs to change. And here’s your opportunity to help do that!

A little more info about the survey that Dr. Attai shared with me:

All responses are anonymous and once the survey is complete, we will analyze the results with the help of a statistician. We plan to then write up the results with the aim of publishing in an oncology-related journal. This will rely on obtaining a large number of responses. Because we are looking at so many variables, a large number of participants will be required to achieve any statistical significance.

Helping your medical team better understand your side effects from these medications will enable them to better help you (and future patients) manage them.

Again, the more participants there are, the more helpful the results will be.

So, what are you waiting for?

If your breast cancer is/was hormone positive and you are on, have ever been on, or was offered but declined endocrine therapy, why not participate?

Complete the survey.

I did. It’s quick. It’s easy. You get to be anonymous.

If you qualify, I hope you choose to participate too.

Let YOUR voice be heard!

Don’t delay. This survey closes on June 9, 2019.

To learn more and/or to participate, click on the blue link below:

Endocrine Therapy for Breast Cancer: Patient-Reported Symptoms, Adherence and Role of Medical Team

Also, please help spread the word!

Share this post far and wide. Or share Dr. Attai’s post. Better yet, share them both!

If your breast cancer was not hormone positive, consider sharing about this important survey anyway. Yes, it’s that important.

Thank you!

To get more articles like this delivered weekly to your inbox, Click Here!

Are you presently on, or have you ever been on endocrine therapy that was prescribed for you?

Has endocrine therapy been prescribed for you, but you declined to begin?

If you qualify, do you plan to participate in this survey, or have you already done so?

The post Endocrine Therapy for Breast Cancer: Let Your Voice Be Heard In this Research Survey! appeared first on Nancy's Point.

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I have written about the walls in Cancer Land. The divisions. The rifts. The hierarchies. Today, let’s talk about fitting in, or rather, not fitting in.

Cancer or no cancer, have you ever struggled to fit in?  Who hasn’t, right?

Share about a time you struggled to fit in with a comment below, if you want to.

I’ll go first.

As an awkward preteen, I stood half a foot taller than my older sisters. I’d often be asked, why are you the tallest if you’re the youngest (of the sisters)?

Yeah, dumb question.

When you’re already feeling awkward for umpteem reasons at that age, getting asked a ridiculous question like that sure didn’t make me feel better about being tall. And btw, I’m not even tall. It’s just that in my family I am.

And do you remember high school?

Yeah, me too.

Flash forward a bunch of decades into my post-cancer diagnosis life.

Sometimes, even today, I feel like a cancer misfit.

What about you?

Do you ever feel like a cancer misfit?

What do I mean?

Well, let me give you some examples.

As a brca2+ person, I belong to a couple online groups that were set up to support others like me, meaning other brca+ people. I sorta fit in. I sorta don’t. Sure, I embrace that whole knowledge is power idea. But heck, I didn’t even want to find out about my potential genetic mutation at first.

(Long story. Read my memoir, if you’re interested.) I procrastinated about all that, too, and look where that got me.

Yep. Sometimes I feel like a misfit.

I am not an advocate who travels across the country attending conferences or one who deciphers the latest scientific articles as so many of my fellow advocates who I greatly admire do. I traveled across the country once to attend a Living Beyond Breast Cancer advocacy event. It was a good experience, but the traveling advocate role is not for me. I just wanna stay home. I choose to advocate via my keyboard.

So, perhaps I’m an advocate misfit too.

I wasn’t young when I was diagnosed. I wasn’t old either. Okay, not that old. Younger than the “typical” breast cancer patient at diagnosis anyway.

Yep. Misfit.

I am not a fan of the rah-rah, wear pink, sisterhood camaraderie sort of groups.

Misfit.

I have chosen never to sugarcoat my cancer experience. I believe sharing the ugly sides of breast cancer can be uplifting in a weird (but necessary) sort of way, too. Lots of people will never understand my approach or even try to understand because they don’t want to understand.

Misfit.

I cannot find silver linings in this cancer mess. Heck, I don’t even want to find silver linings in cancer. I still say, cancer sucks. Period.

Can we just stop trying to re-frame it as something it’s not?

Misfit.

And the labels. I rarely refer to myself as a survivor, in fact, the label sorta makes me cringe. And yet, even after nine years, I have yet to come up with a label that fits that non-cancer people understand.

And don’t label me as strong, brave, courageous or anything else either. I was pretty much a wimpy cancer patient. Still am.

Misfit.

My heart and soul is with my sisters and brothers who are metastatic, but I don’t completely fit in with them either. (Not that I want to.)

Misfit.

Only a handful of bloggers who were blogging when I started are still blogging.

Why am I still at it?

Misfit.

I am the only one of my siblings who’s had a cancer diagnosis. (Thank God.)

But still, misfit.

I know I’m supposed to be more grateful for my reconstructed chest. But honestly, I’m not all that satisfied with it.

Misfit. 

People assume I have moved on and just shelved all that cancer stuff. I’ve moved forward, but on – that’s another matter.

Misfit.

I could go on and on, but you get my point.

And yes, of course, I know I’m supposed to follow my own advice and “do cancer” and cancer survivorship my way. Ditch the expectations. Ditch the guilt.

Be real. Be me. I mean, I’m always telling you, my Dear Readers, this.

And yet, why is it still so hard?

Misfit.

I wrote this post because like usual, I am wondering if you have ever felt the same.

If you have, please tell me about it.

If you want to read more articles like this one, Click Here. Do you ever feel like a cancer misfit? Or maybe just a misfit in general? When you feel like you don’t fit in or don’t measure up, what do you do?

If you liked this post, please share it. Thank you!

 

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The other day when I was shopping for a card to give Best Mother-in-Law Ever, I thought about how lucky I am to still have someone to get a card for this Mother’s Day.

One of the next thoughts I had while sifting through cards and ruling most of them out because they said dumb things was, is it just me, or is it harder to find appropriate cards these days (for any occasion)?

A lot of random thoughts have been popping into my head as I contemplated what I might write about this Mother’s Day, or if I should write about anything at all. I decided, okay, I’ll just go with random.

(Blogging tip: when in doubt, go with random thoughts about the subject of your choosing.)

So, here are 13 random thoughts for Mother’s Day 2019.

1. As you might know, my mother died eleven years ago from metastatic breast cancer.

She’s been gone dead for a decent chunk of time now, a fact that in some ways, is still startling, saddening (is that a word?), upsetting and even after eleven years, still hard to completely fathom.

2. Sometimes I just want to hear my mother’s voice again.

Though I remember so much about my mother, I’m sad I now have to stop and think about what her voice sounded like. I worry I’ve forgotten.

Shouldn’t a good daughter be able to remember the sound of her mother’s voice without having to think so hard about it?

I wish I had more recordings of that first voice I ever heard and will never hear again.

3. Like most relationships, mother/daughter relationships are complex.

The relationship I had with my mother was complex too, but luckily, it was mostly good. Really good. I’m grateful for that this Mother’s Day and every other day of the year too.

4. Sometimes it really pisses me off that my mother wasn’t around for my breast cancer diagnosis and all its aftermath.

I know it would’ve been hard for her to witness all the chaos. But OMG, we could’ve had some amazing conversations, which I’m sure would’ve included a lots of commiserating, ranting and likely a bit of cussing too.

5. I try really hard not to compare my cancer experience to my mother’s.

Most of the time, I’m successful. But not all the time.

6. Even now, after eleven years, I often find myself thinking, I wonder what Mother would think.

This often happens when I finish a book, see a movie, plant a flower, bake something using one of her recipes and yes, when I know my house is a wreck, which is fairly often these days. (Hers never was, or so it seemed.)

And of course, I wonder what she’d think about me writing about her in blog posts (like this one) and in my books.

7. Pastors, priests, rabbis and other clergy should stop and think about the pain they perhaps unknowingly inflict on some when they ask mothers to stand up for acknowledgement on Mother’s Day, give out flowers or whatever they do to mark the day.

After all, some among us are not mothers yet long to be mothers, have recently lost mothers, have hurtful memories about mothers, were once mothers but no longer are mothers, have no interest in being mothers yet feel pressured to be mothers, or whatever the case might be.

Might there be a better way?

Like just no standing?

You might want to read, When Mother’s Day Hurts.

8. I don’t have a lot of regrets regarding my mother, but I have a few. I’ll share about them some day. Maybe.

9. I am incredibly lucky to be a mother to three wonderful children.

Sure, they’re adults now, but they’ll always be my kiddos. Motherhood isn’t easy, but it’s always a blessing. At least it has been for me. Grateful is what I am for each of them this Mother’s Day.

10. I am now a mother-in-law x 3.

This is a new, interesting and fun role for me.

11. I am also now of a certain age when people ask, do you have any grandchildren yet?

Interesting, the assumptions people make based on your age, appearance or whatever. So far, I always just smile and say, yes, four furry ones.

12. It intrigues me to think about the lives our mothers led before they were mothers. What about you?

Hence, this post from last year, Our Mothers Before They Were Mothers.

13. All these made up, Hallmark holidays are sort of lame.

I mean, do we really need designated days to recognize our moms, dads, grandparents or whomever or whatever?

On the other hand, perhaps it’s a good thing to mark our calendars with days like these.

And so…

Happy Mother’s Day to women everywhere who love and nurture children!

If the day is a painful one for you, I’m sorry.

May it help to know you’re not alone and that others understand, or try to.

Share something about YOUR mother, grandmother or other special woman who’s had an impact on your life.

If you have a painful memory about Mother’s Day, you’re welcome to share about that too.

Share anything at all about Mother’s Day or motherhood (or shopping for cards these days).

To read more articles like this, CLICK HERE! Keeping it real. Support you can use.

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Readers sometimes confide that they feel their doctors don’t listen. Perhaps you have felt this way too. Readers most often share feeling this way regarding discussions they’ve had with their oncologists about side effects from endocrine therapy.

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

But, of course, endocrine therapy is not the only realm in which patients sometimes feel not listened to.

In fact, communicating effectively with your doctor can be challenging no matter what your issues are or the state of your health, right?

A common complaint readers share (again, most often regarding endocrine therapy treatment) is that their symptoms are dismissed as not that bad, pretty normal, or par for the course due to normal aging.

Annoying as hell, right?

Of course, most doctors are NOT dismissive, though sometimes they give this impression. And many doctors are indeed excellent listeners.

You might want to read, When Doctors Seem Dismissive.

It’s important to remember that doctors are NOT mind readers.

Therefore, the burden of effective patient/doctor communication (regarding your issues/questions) falls mostly on the patient. Yes, that means YOU. And me. Actually, all of us because at some point, we all are, or will be, patients. Even doctors!

Having said this, some doctors definitely need to step it up. After all, a huge part of being a compassionate, effective physician is being a good listener.

Docs, (and patients too) you might want to read this piece, Is the Patient Difficult? Or Are You Not Listening? by Dr. Don S. Dizon.

There are likely many reasons why some doctors are not particularly good at listening, but I suspect a primary reason is related to time, or the lack thereof.

Listening requires a conscious effort by the listener and time. The latter is often in short supply in the medical setting too. Nonetheless, lack of time cannot be the excuse for not listening.

In addition, there are perhaps other questions in need of exploring regarding this topic of listening such as:

Do doctors listen differently to women vs. men?

And what about the elderly?

I will leave those questions for another day.

But you might want to read, Why Don’t Doctors Believe Women? via Heart Sisters.

Doctors need to keep in mind that we patients are seeing you because, well, because we’re sick. Most of the time anyway. This in itself, means we are not at our best due to potentially, a lot of reasons.

In addition, much of illness is embarrassing. Sometimes super embarrassing.

Personal matters are often being discussed. We might be seeing you without all our clothes on. We are exposing ourselves. Literally.

In other words, being a patient is hard. Damn hard.

And for some of us, it’s even harder due to our specific disease or condition or even due to our personalities.

For instance, I’m the sort of person who doesn’t like others being in my personal space. Heck, I don’t even like getting my hair cut. So yeah, being a breast cancer patient is my worst nightmare. Well, one of them anyway.

So let’s talk about ways to make communicating with your doctor a little more effective and hopefully a little easier.

Ten tips to get your doctor to listen:

1. Go in prepared. Write stuff down and get specific so you have documentation about what ails you and/or what your issues are.

For example, if you’re a cancer patient, keeping a journal or record of some kind is super helpful. Record your symptoms, side effects and personal observations. Be specific. If your joints hurt, which ones? Having pain, where exactly? Are there certain times you feel worse or better? Are you sleeping? Are you eating? Record dates and times whenever possible. Again, specifics are helpful.

2. Make a list of all questions. Yes, I mean ALL.

The list of questions is a no-brainer, right? But again, be specific. And don’t forget to take your questions with you when you go out the door to your appointment. (I have forgotten mine.)

And after you ask your questions, write down the answers. If you’re like me, by the time you get home, you sometimes forget what they were, right?

3. Take someone with you to appointments IF it will help put you more at ease and give you confidence to be more direct.

Obviously, if another pair of eyes and ears makes you more uncomfortable, going it alone is better.

4. Insist on speaking with a doctor before any disrobing takes place so you begin your appointment from a position of less vulnerability.

This is especially important when you are meeting a new doctor. Sometimes time doesn’t allow for this when your doctor isn’t new, but feel free to request this if it matters to you.

5. Don’t settle and keep pressing.

Be sure you understand answers, directions, reasons or whatever. Get stuff repeated until you understand. Otherwise, what’s the point of being there?

Don’t worry about being labeled “that difficult patient”.

(I’ve probably been called that. I know I’ve been called angry; I read that via my patient portal.)

Who cares?

6. Don’t be intimidated. Okay, try not to be.

Again, as a patient, you are in a vulnerable state. I get that. We all get that. But this is your appointment, your life. Speak up. Voice your concerns. Ask your questions. Step out of your comfort zone. Stick up for what you believe and/or want. Don’t be put off.

7. It’s okay to interrupt the doctor.

This doesn’t mean you get to be rude. That is never okay. However, it does mean you can interrupt to say things like, excuse me, but that’s not helpful. Or please repeat that. Or I don’t think that’ll work. Or I already tried that. Or it feels like you aren’t listening. Or whatever.

8. Ask for referrals if you need more (or different) help.

If you are too uncomfortable with a certain question, ask to speak to someone else. This could be a nurse (if your concern is immediate) or a different physician in a different area of expertise (if you can wait for availability). If you need more, or something different, there are options.

If necessary, switch doctors.

9. If available to you, utilize your patient portal.

You can ask uncomfortable questions or bring up topics you want to discuss there beforehand. Works nicely if you remember stuff you still want to ask once you get home too.

10. Remember no concern is too small, or too big, to bring up.

If something’s bothering you, mention it. If you don’t, you’ll likely regret that you didn’t when you get home. Your doctor has likely heard it all before, perhaps just not from you. So, speak up. (Yes, I know it’s hard.)

Finally, it’s important to remember that communicating effectively with your doctor(s) is really self-advocating, and self-advocating is a skill. Like other skills it takes practice.

You will get better at it. You will.

This doesn’t mean it will be ever be easy. It sure isn’t for me.

But hopefully it can get a little easier.

Sometimes that’s enough.

Sign up for weekly updates from Nancy’s Point!

Do your doctors listen?

Share about a time you felt not listened to – or about a time you did feel listened to.

Is it hard for you to talk frankly with your doctors and/or others on your medical team?

What tip(s) might you add?

Image by Alex Proimos via flickr and adapted under CC licensing

The post When Your Doctor Doesn’t Listen—Ten Tips to Help Change that appeared first on Nancy's Point.

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April 23 is designated as World Book Day. It’s also called World Book and Copyright Day. If you’re interested in learning the details as to when and why it was started, click here.

But who really cares about all that?

Every day is World Book Day or should be, right?

You might be thinking, oh there she goes again talking about her books. But you’d be wrong!

Well, I will mention mine later, but I decided World Book Day would be the perfect day to share about a few of my favorite cancer-related books. And I am hoping you will share about YOURS as well in the comments.

So, let’s talk cancer books.

Of course, not everyone who’s been diagnosed with cancer wants to read about cancer. I get that. I do. 

You might think since I’ve had a cancer diagnosis, have written and continue to write about about cancer, that’d be enough. MORE than enough. 

Call me weird, but I can’t seem to read enough about the subject.

In fact, I seem to be drawn to books, articles and even movies that are cancer related. Of course, I’m drawn to other topics, too, but that can be a topic for another day. And my favorite genre of all (cancer or no cancer) is memoir.

Probably no surprise there, right?

I divided my favorites into sections. So, let’s to get to it.

1. Favorite science-based cancer book – The Emperor of All Maladies:  A Biography of Cancer, by Siddhartha Mukherjee

Hands down, it’s this one. I reviewed the PBS Ken Burns documentary just in case you’re interested and haven’t seen it. Mukherjee’s second book, The Gene, was excellent as well, but a bit (okay, a lot) too detailed for me. Took me FOREVER to get through it. But I’m a slow reader these days. 

You might want to read my review of The Gene:  An Intimate History.

2. Favorite cancer memoir – The Mercy Papers:  A Memoir of Three Weeks by Robin Romm

This was a tough call as there are a bunch I love. But this one is so raw and so honest. In case you’re wondering about those three weeks – the book is about a daughter who goes home to spend time with her mother who’s dying from metastatic breast cancer. Yeah, it’s a tough read. But so good for so many reasons. Loved it.

3. Favorite cancer poetry books – Metastatic Madness by Carol A. Miele and Fine Black Lines by Lois Tschetter Hjelmstad and Dancing with Cancer by Janet Cosner

Okay, I know that’s three, but I admire poets greatly, and April is National Poetry Month, so there you go. Three picks!

You might want to read my review of, Dancing with Breast Cancer:  A memoir in poems.

4. Favorite advocacy book – Pink Ribbon Blues by Gayle Sulik

This book opened my eyes. It’s a must read.

You might want to read my review.

5. Favorite comic-style books – The Little Pink Book of (Mostly) Cancer Cartoons by Kate Matthews and In-Between Days by Teva Harrison.

I reviewed Harrison’s book here.

6. Favorite book with general breast cancer info – Dr. Susan Love’s Breast Book by Susan M. Love, MD with Karen Lindsey and Elizabeth Love.

This book remains the go-to book for learning about breast cancer. Really good resource.

You might want to read my review.

7. Cancer-related books by fellow bloggers 

Okay, this list is long.

As a blogger/author myself, I feel it’s super important to support other bloggers/authors in the cancer genre, so sharing these titles just makes me happy.

If you’re able to, please support these writers by buying, reading and reviewing their books when and where you see fit.

If I forgot someone, apologies. Feel free to send me a reminder. I have books all over my house, and my memory sorta sucks. Plus, I haven’t read them ALL yet. But I’ll get to as many as I can.

Here’s my list so far of ones I’ve read. The ones with links, I reviewed.

Being Sarah by Sarah Horton

Beyond the Pink Moon:  A Memoir of Legacy, Loss and Survival by Nicki Boscia Durlester

Calling the Shots in Your Medical Care by Beth Gainer

The Cancer Culture Chronicles by Rachel Cheetam Moro

Does This Outfit Make Me Look Bald? by Jennifer Pellechio-Lukowiak

The Dog Lived (and so will I) by Teresa J. Rhyne

From Zero to Mastectomy by Jackie Fox

Help Me Live by Lori Hope

I Never Signed up for This by Darryle Pollack

I’m Still Standing by Wendy Watson

Kicking Cancer to the Curb by Carol A. Meile

Left Boob Gone Rogue by Uzma Yunas, MD

Mourning Has Broken by Jan Hasak

Navigating the C:  A Nurse Charts the Course for Survivorship Care by Alene Nitzky, PhD, RN, OCN

Not Done Yet by Laurie Kingston

Persevere:  A Life with Cancer by Lisa Bonchek Adams

The Pink Moon Lovelies:  Empowering Stories of Survival by Nicki Boscia Durlester

Resurrection Lily:  The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew: A Memoir by Amy Byer Shainman

39 Things to Make a Cancer Patient Smile by Susan Rief

A Woman’s Guide to Living with Heart Disease by Carolyn Thomas (Yeah, I know this one technically isn’t cancer related, but then again it is. Read it and you will understand what I mean.)

8. Other miscellaneous cancer books I recommend:

Breast Cancer Alphabet by Madhulika Sikka

Bright-Sided by Barbara Ehrenreich

The Cancer Journals by Audre Lorde

Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler

The Immortal Life of Henrietta Lacks by Rebecca Skloot

The Middle Place by Kelly Corrigan

Resilience by Elizabeth Edwards

So Much to Be Done by Barbara Brenner

What We Have by Amy Boesky

When Breath Becomes Air by Paul Kalanithi

Write for Life by David Tabatsky

And Finally… You knew I had to mention mine, right?

I am proud of my three contributions thus far to the world’s book shelf. Okay, that’s a stretch, but you know what I mean.

If you’ve read any or all, thank you. If you haven’t, I hope you will.

Click on the image to learn more about my books.

And remember to write a review – not just for my books, but for any author’s book you like. Sure, reviews take a little work and a little time, but authors sure appreciate them. A lot!

Oh, and one more thing (well, actually two more things) – next on my to-read list:

The Unwinding of the Miracle by Julie Yip-Williams

Illness As Metaphor by Susan Sontag

Now it’s YOUR turn!

Don’t forget to sign up for my weekly updates! Keeping it real. Support you can use.

Do you read cancer books? Why or why not?

If you do, share one or two of your favorites.

What are you reading right now or what’s on your to-read list? (cancer related or not cancer related)

The post Let’s Talk Cancer Books! #WorldBookDay appeared first on Nancy's Point.

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If you’ve ever been in a dark place, emotionally speaking, or gone through tough times, was there someone who really came through for you and made a difference? Do you ever wonder why that one (or if you’re lucky, more than one) person’s actions were/are so helpful and another person’s irritated/irritate the heck out of you?

I could be wrong, but I would guess the person you’ve found to be most supportive during difficult times was the one who refrained from trying to be the Fixer.

Am I right?

When a person is grieving or has been handed a cancer diagnosis or is going through any sort of life-altering, difficult experience, they probably aren’t looking for a Fixer.

Some pain cannot be fixed.

Suggesting to someone who’s hurting that she should be strong when she’s feeling anything but, is not a good idea either.

Offering platitudes in general just isn’t that helpful.

People who are in pain don’t need Fixers or platitudes.

You might want to read, The Unspoken Half of Those Platitudes.

They likely do need Listeners.

I just finished reading the book, Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. Bowler was diagnosed with stage IV colon cancer at age 35.

In her book, she addresses this topic of Fixers and platitudes, too, saying:

These are the three life lessons people try to teach me that, frankly, feel worse than cancer itself. The first is that I shouldn’t be so upset, because the significance of death is relative. I like to call the people with that message the Minimizers…A lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home first.

I’m pretty sure we’ve all heard from the Minimizers, am I right?

The Minimizers often resort to those annoying “at least” comments too.

Nothing minimizes your experience more than hearing something like, at least you got the good cancer or at least he’s in a better place now. Ugh…

“At least” comments make me want to scream!

Bowler shares about life lesson number two that another set of cheerleaders often insist upon:

…the Teachers, who focus on how this experience is supposed to be an education in mind, body and spirit.

(As a former educator, it pains me a little to call this group the Teachers.)

This type of cheer-leading really grates on my nerves – as you likely know by now! Pushing back, is THE basic premise behind my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person.

I’ll say it again and again. And again:

Cancer is a horrible disease NOT an enlightenment program.

And the same can be said about grief.

Who needs a degree from the University of Cancer or Grief?

(That’s supposed to be sarcasm.)

And the third lesson is mostly about attitude about which Bowler says this:

The hardest lessons come from the Solutions People, who are already a little disappointed that I am not saving myself. 

Yep. The tyranny of positive thinking. No need to say more.

People who are hurting don’t need Fixers, or Minimizers, or Teachers or Solution Givers.

What they likely need is just the presence of someone who cares, shows up (doesn’t even necessarily have to be physically) and listens.

Sitting with someone and listening is sometimes the best way of all to help. Silence can be very validating and comforting. Hugs can be as well.

Bowler’s wise words near the end of her book say it so well:

The truth is that no one knows what to say. It’s awkward. Pain is awkward. Tragedy is awkward. People’s weird, suffering bodies are awkward. But take the advice of one man who wrote to me with his policy:  Show up and shut up.

So, when someone you care about is hurting, don’t try to be the Fixer. That’s not your job. 

What is?

Show up and shut up. 

Perhaps it is as simple as that.

Sure, sometimes the latter is hard to do. But it just might be the most important and easiest way to help that dear one who’s hurting.

Because sometimes silence isn’t silent at all. If you want to read more articles like this one, Click Here. Share about an encounter you’ve had with a Fixer, Minimizer, Teacher or Solutions Giver.  How do you try to help others who are hurting? When you’re hurting, what do you appreciate most from your supporters?

If you like this post, please share it. Thank you!

 

The post When Someone You Care About Is Hurting, Don’t Try to Be a Fixer appeared first on Nancy's Point.

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