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Risky Business

For those of you who have read my book, Beyond the Pink Ribbon, you know that I have spent a lot of time and energy trying to understand all of the risks associated with breast cancer. So, when my cancer came back, I really needed to understand why. Unfortunately, there isn’t as much information available on recurrence risks, but here’s what I found…

  • Size of tumor
    It stands to reason, the larger tumors carry the greatest risk. My tumor was 8 cm, which is about 3 inches long. So it’s pretty big by most standards.
  • Involvement of lymph nodes
    If you have invasion of the cancer into your lymph nodes, recurrence risk is greater. Despite the larger tumor size, I was lucky to have only micro-metastasis in my lymph nodes. So it wasn’t significant at all.
  • Positive margins, or close margins
    When your cancer is removed, the pathologist looks for clear, or negative margins, which means that all the tissue around the cancer was clear. Thus, they got all of it. If you have a positive margin, or really small margins, you are at greater risk for the cancer to return. This makes sense, since, technically, they may not have gotten it all the first time. In my case, my margins were all good.
  • Lack of radiation following a lumpectomy
    This did not apply to me because I did have radiation. (And, allegedly, I had a mastectomy, not a lumpectomy, but more on that in a minute.)
  • Younger age
    Women who are under the age of 35 have a higher risk of recurrence, I’m guessing because they have a lot more time to get it back. I couldn’t really find a reason.
  • Inflammatory breast cancer
    Women with this type have a higher risk of recurrence. Again, this did not apply to me.
  • Certain types of cancer cells
    Women with “triple negative” cancer have cancer that tests negative for estrogen receptors (ER), progesterone receptors (PR), and excess HER2 protein. My cancer was ER+, PR+ and HER2-, so I was not “triple negative”.

So, really, other than the size of my tumor, none of the other risks apply.

But let’s go back to that whole mastectomy / lumpectomy thing. By definition, a lumpectomy is the removal of the tumor and some surrounding tissue. A mastectomy is removal “of the entire breast”. So with a lumpectomy, you would continue to have imaging done, like mammograms or MRIs. With a mastectomy, there is no imaging; you only have physical exam to go by. But, since you should essentially be skin on muscle, a recurrence would be easy to identify. By not removing “the entire breast”, I sort of had a lumpectomy, but without the benefit of imaging. It put me at greater risk of a recurrence because of a) the amount of tissue left behind, and b) the lack of imaging.

For the record, the amount of tissue left behind…

Right breast: 14.3 x 9.7 x 2.6 cm (5.6 x 3.8 x 1″)
One whole inch deep on the side with cancer!!

Left breast: 18.5 x 9.1 x 3.7 cm (7.3 x 3.6 x 1.5″)
What would be the point of prophylactic mastectomy of the non-cancerous breast to leave THIS much behind?

You won’t find this risk on any risk list, but perhaps it should be.

 

IMDb: Risky Business (1983)

A Delicate Balance

With estrogen positive tumors, trying to understand how to balance your hormones so your very own body doesn’t kill itself is an every day mindset. My tumors are “highly estrogenic”… I recall reading 96% on my original pathology. As you all know, I do my best to research as much as I can so I can positively influence my health, but it’s tough to keep up with all the latest information.

Recently, when lunching with one of my plant-based besties, Lori J., I learned about a new book by Dr. Neal Barnard titled “Your Body in Balance.” The Amazon description says, in part, “Hidden in everyday foods are the causes of a surprising range of health problems: infertility, menstrual cramps, weight gain, hair loss, breast and prostate cancer, hot flashes, and much more. All of these conditions have one thing in common: they are fueled by hormones that are hiding in foods or are influenced by the foods we eat.” Hormones and food? Tell me more…

The book isn’t coming out until February 4, 2020, but, luckily, Lori also shared with me a link to a two-part interview with Dr. Barnard by Jeanne Schumacher of Simply Plant Based. The links to both videos are below.

Can I just tell you that these videos were eye-opening and mind-blowing to me? Yes, I know the benefits of a plant-based diet. Yes, I know there is a link between fat cells and excess estrogen, etc. But what I didn’t quite understand is how diet helps regulate our hormones. How our body knows how to get rid of excess estrogen, but needs the mechanisms to help it along. This “estrogen dominance” is what contributes to so many of our health issues as women and fiber is one of the keys to getting rid of the excess. If we don’t eat enough fiber (the amount is higher than you think), those hormones just get re-absorbed into the body. And, again, the more fat/extra weight you have, the more estrogen that is stored/created.

What was even more eye-opening for me was the impact of this fiber, and a healthy diet, on pretty much all those things we women struggle with: cramps, PMS, PCOS, endometriosis, breast cancer, menopause… Dr. Barnard doesn’t just talk about “what”, but “why”, which is so important to motivation. If you don’t know why you are doing it, it’s easy to lose focus. Over the past seven years, I did allow things like cheese to creep back into my diet, along with a few extra pounds. I have been extra diligent since my recurrence diagnosis, but shit got real. There is no more “creeping back”. I need to feed my body the right foods to help find that delicate balance between enough and too much. I need to give my body the tools it needs to do what it already knows how to do.

The videos are about 2 hours total, but it can be life-changing for those of you who struggle with any of those issues. I  cannot wait for this book to show up on February 4th! I implore all the women who read this blog to watch these videos, or to order the book.

Many thanks to Lori for the information!!

Part I

Part II

 

IMDb: A Delicate Balance (1973)

Broken


Thank you to all of you who wrote or called to offer your prayers, support and positive energy after Monday’s diagnosis. I am forever blessed by all the wonderful people in my life, from so many different facets, and your kind words have uplifted my spirit. Thank you, thank you, thank you!

*****

I alluded in my last post to my recent experiences with the healthcare system (and I use the word health”care” very loosely). Things have changed so dramatically from my days as a caretaker in the late 1990s when Ray was sick. Back then, we had healthcare facilities who really worked with us on things like payment. As long as I was paying something every month, they didn’t care. Copayments were a thing, but I never remember any really crazy expenses. We even had a patient advocate assigned to us who helped us navigate the system. She helped to pursue coverage for a Medicare facility that was not covered by our plan. Basically, she went to the Board, presented our case, and got the insurance company to pay for the long term care program Ray needed after his meningitis.

In those days, not all that long ago, the doctor made the decisions. We were never refused any test that was requested by the doctor, and we had the opportunity to go anywhere. There was no fighting with the insurance to get coverage when we moved his treatment to Cleveland.

But that was then, and this is now.

I am horrified every day by what our health care industry has become. Not just in my own experiences, but in the experiences of women that I encounter every day in my breast cancer Facebook groups — women who give up, tired of fighting, and not wanting to bankrupt their families.

With all of my recent tests, I have paid at least $100 out of pocket. (Of course, our plan year started on November 1st, so no deductibles were met). In the past, facilities would call ahead of time to pre-register me; now they call to advise me how much I will owe when I get there. For my biopsy, the out-of-pocket cost was $1,472. I’m one of the lucky ones… we can pay that. But how many people will walk away from that test, not as lucky? How many will forego groceries, or other medicines, or any other necessity to pay this bill? The system is broken. Healthcare is a for-profit industry and the richer you are, the better care you can obtain. I try not be political on this page, but this is something we all need to fight for. Shouldn’t healthcare be a right for everyone?

And, of course, the decision-making of the past has been removed from doctors and now rests firmly with the insurance companies. Given my history of cancer, my oncologist wanted me to have a PET scan. I waited 3 days to find out that my insurance would not approve it. So the test MY DOCTOR wants, is not allowed by the insurance company. So, instead, I need TWO tests… a CT scan and a bone scan. I can’t help but wonder the overall cost benefit of that, as well as the health impact on the patient. I now will require TWO exposures to radiation, instead of one. And the kicker is, if they find something on either of those two tests, THEN I will be required to have a PET scan. What a scam!! With the amount of radiation I have had over the years, I absolutely worry about the cumulative effects of radiation and having to have multiple tests both scares me and infuriates me.

My last comment on health care? The red tape is insane.

I get all my testing done at a local imaging place. I have used this place since the beginning of my health care journey in 2008. I used to pre-register by phone, walk in to the facility, check in within 30 seconds, sit for a few minutes, and then get called back for my test. This facility has since been bought out by a larger health care conglomerate. There is no pre-registration over the phone (just the call about cost). I now wait 10-20 minutes in line, just to get to the desk. It’s then another 20 minutes at the desk doing paperwork. Yep. Real, honest-to-goodness PAPERS! Piles of papers! Once I’m taken back to the testing room, I have to do more paperwork! And then I wait some more. For my biopsy, which took 10 minutes, tops, I was at the facility for 1:45. Why? I’m already in the system… I was just here last week… you guys are the ones who ordered the biopsy, why don’t you have the order… why all the paperwork? When I’m already stressed, there’s nothing more likely to push me over the edge than red tape and inefficiencies!

Rant over. It’s been a frustrating few weeks, with more frustration to come, I’m sure. Today I will have another ultrasound (full chest wall, since they only looked at one specific spot last time). Tomorrow is my bone scan. And Tuesday is my CT scan. After that, I will wait a week before meeting with my oncologist to discuss results and game plan. Yep… my appointment is the day before Thanksgiving!

Let’s pray we have a lot to be thankful for!

 

IMDb: Broken (2012)

 

Announcing to the World

About six weeks ago, I mentioned that I was in the process of writing my first (but hopefully not last) book. I had planned to give a sneak peek between then and now, but it’s been a crazy six weeks, trying to wrap up the book amidst all of our busy schedules. This book experience has been amazing and I have learned SO much. The biggest lesson? That the easiest part of writing a book is… writing a book! It’s all the other stuff that’s hard, especially when you are self-publishing. Getting Word to cooperate when you are trying to format your manuscript into a template… frustrating! Figuring out the best way to create a cover, after multiple attempts using Canva and KDP failed… even more frustrating!

I am grateful to the love, support, and help of so many people who got me through the frustration, taught me how to “layer” in PhotoShop, or fixed a file for me! Those who shared their thoughts on page colors and font selections, who proofed and re-proofed, edited and re-edited. I am immensely blessed to have so many people who helped me on this book-writing journey!

With that, I am so very excited to announce that my book, “Beyond the Pink Ribbon: What I Wish I Knew About Breast Cancer (Before I Got It)” is now available in paperback on Amazon!! Woo hoo! In addition to being exciting, this is also a bit scary and surreal for me. To write a book is to really put yourself out there, making yourself really vulnerable. It’s a huge step out of my comfort zone, but a dream I have realized after several decades of wanting to be an author.

The book, as the name would imply, details my journey from diagnosis to returned health. I think it will be a great resource for newly diagnosed women, even if a different diagnosis than mine, and for women who might just be trying to lower their risk of breast cancer in the first place.

I do ask that if you purchase and read the book, that you return to Amazon to do a review. It’s apparently how one moves up the Amazon rating scale, which has benefits (that I am still learning)!

For those of you who prefer e-book, I am working on this and hope to have that released by early next week.

IMDb: Announcing to the World (1950)

6 Years

Snip20180831_25 copy

Today I mark 6 years of being cancer free.

August 31, 2012 was the date of my double mastectomy – the day I consider myself to be cancer free, even though I would still need 3+ months of chemo and 8 weeks of radiation. I documented my mastectomy adventures in this blog post.

In reviewing that post this morning, I am transported back to that day. I didn’t know how many years, or months, or days I would have left (do we ever?) and I am grateful for every day since my breast cancer diagnosis.

Some random thoughts this morning, as I reflect on these six years…

  • I spent a lot of time waiting on the day of my surgery. We had to be there so early, to sit around and do nothing. I have wasted so much time just waiting in doctor’s offices in the ensuing years.  Some doctors are better than others, but in addition to waiting the morning of my surgery, I also waited 90 minutes on my first day of chemo. These are pretty nerve-racking events and I’m just not sure that all doctors understand what they are doing to patients’ mental states by having us just sit there — waiting to have parts removed or poison injected into our bodies.  I think there needs to be more awareness on the emotional toll that is taken on cancer patients.
  • When I re-read my description of the sentinel node biopsy that day, I laugh. It seems so tame compared to my actual experience. There are truly no words to describe exactly how painful that experience was. It hurt like HELL! Not even childbirth ranked as high in my books. I always say if men had to have that done, they would a) numb the area and/or b) knock us out! Radioactive bee stings in your nipple. Yep. Good times!
  • I still have no regrets on not reconstructing, although I do wish I had emphatically stated “flat”, so that what remained was not lop-sided, bumpy and dog-eared. But doctors always assume that you will change your mind and will eventually see clear to get implants. My logical brain could not wrap itself around implanting foreign substances into my body, putting it through more surgeries and pain and inconvenience, risking infection, and more… just to satisfy a social norm. And especially considering this was my second cancer. I know it’s a very personal choice and I’m not criticizing those who make that decision. We all have our reasons for our choices and those are mine.
  • I still live with the daily reminders — scars, hearing loss, memory loss, thinning hair, fear — of cancer. But those reminders encourage me to try to make the most of each day. To not worry so much. To take care of myself so I’m here for the long-haul (however “long haul” gets defined). To eat right and get enough sleep. To focus on what’s truly important, and not get caught up in petty worries. To forgive and forget. To keep away from physical and emotional toxins. To help influence others to be healthier. To be grateful for every. single. day.

And here I am, six years later. Appreciative. Healthy. Imperfect. Doing the best I can every day. Content.

Grateful. Here’s to the next six!

IMDb: 6 Years (2015)

 

The Skin I Live In

blur-body-care-161608Every so often I like to remind my readers to take care of their skin. Since I went for my annual full body scan this morning, today seemed like a good day for that reminder!

Several years ago, a group of women I worked with and I decided that we needed to go for a skin exam. We had seen an advertisement for free exams at a facility about 30 minutes or so from work and we all signed up. During that exam, an “atypical” mole was identified and it was suggested that I see a dermatologist for follow up. The suspect mole was ultimately removed without any issue, and thus began my commitment to annual full body scan. I never miss it.

Let’s face it, we’ve all done some stupid stuff — hot sun, no hat, no sunscreen, or worse yet, application of baby oil. I’ve had some super painful burns in my past and, given my cancer history, I think it’s prudent to get checked regularly. Even if you don’t have a history of cancer, it’s a smart move.

We all know that we should have our skin checked if we see a change in size, shape or color of a mole. But there are many parts we can’t see by ourselves! My problem mole was on the lower middle of my back; I would never have seen it on my own. And just because you may have burned your scalp, as an example, it doesn’t mean that’s where skin cancer would appear. It can show up anywhere. I have have peace of mind knowing that I was checked by a professional who knows what she’s looking for.

Today I learned that I should look at my toenails before reapplying polish. Not for the discoloration that may come from applying nail polish too often and without break, but to look for any spots that might show up under the nail! I would never have thought to look there. So next time you go for that pedi… take a look!

Another great suggestion I had heard previously (but have yet to implement…my bad…) is to have your spouse, best friend, significant other, mother… someone… take a picture of your back every six months and compare to the prior for any changes that might need a closer look.

If you don’t have insurance or don’t want to pay a co-payment, you can look for free screenings like my co-workers and I did all those years ago. Check out: https://www.aad.org/public/spot-skin-cancer/programs/screenings/find-a-screening

In the meantime, take care of your skin! It’s the only one you have to live in.

IMDb: The Skin I Live In (2011)

Worthy

A common sentiment with many of my female clients, friends and family is this:

“I take care of everyone else, but I never make time to take care of myself.”  

I am surprised at just how often I hear this; it’s not 100% of the time, but it’s close. So on this Mother’s Day, I thought it might be helpful to write an affirmation for all the women out there who struggle to make themselves a priority. Read this. Say this. Embrace this. Live this.

I am worthy.
I am worthy and deserving of self-care.
I will make my own well-being a priority.
I will nourish my body with good food, movement, water and sleep.
I will nourish my mind with meditation, good books and stimulating conversation.
I will nourish my soul with nature, laughter, and letting go.
I will find time for me. Without guilt.
Taking care of myself is the best thing I can do to take care of others.
I will make my own well-being a priority.
I am worthy and deserving of self-care.
I am worthy.

self-care-squad-21

IMDb: Worthy (2017)

 

Bread and Roses

Who doesn’t love bread? Warm, soft, airy bread with gobs of melted butter…?

Since adopting a whole food plant based no oil diet in 2012, bread has been a challenge for me. Most breads are made with oil, and the ones that aren’t tend to be dense and/or dry. I’ve tried a number of different breads and I’m not really a fan (nor is my family) of most of the “healthy” breads; perhaps I have just not found the right one…

I don’t have the time or energy to read the ingredients on every single loaf of bread at Wegmans. And it’s not just the oil, but eggs, “natural flavors” and all sorts of other questionable ingredients. (Remember the “yoga mat” stuff?)

In the search for a healthy bread, I just opt for doing the best I can. Whole wheat. Wheat. Multi-grain. Organic. Close enough. And sometimes, you just need a crusty loaf of white Italian bread or some kind of bun that’s totally processed. Bread is just one of those areas that I have conceded we’ll never be perfect.

I’ve considered making my own (see prior comment on time and energy…) but that also entails digging out the bread maker and finding space for one more kitchen gadget.  Then I found this recipe for a 5 ingredient bread… no bread machine, no kneading, no oil, no artificial ingredients. (I’m sure you’re also thinking “no taste”.)  It only took an hour to make (20 minutes for rising; 40 minutes to bake).  We ate it warm with a smidge of butter, and it was pretty good. Depending on what you are serving it with, you may not need the butter, but I felt like it needed a sauce or something. It was still a little dense, but it had a nice crust, was warm, and (best of all) healthy. There wasn’t a bite left, so I think it passed the family inspection. I think I’m going to try to tweak the recipe a bit…playing with the salt and maple syrup, and also trying some additional seasonings for a more savory flavor.

Bread and Roses 2

As for the roses… Just wanted to wish all of the Moms out there a Happy Mother’s Day weekend!  I hope you are spoiled by your loved ones and get to relax a bit. I’m hoping to sleep in and go to see Avengers: Infinity War.  🙂

p.s. Your history lesson:
As my followers know, I always use the name of a movie as my blog post titles (to align with the “lights cancer action” theme). When I was searching for an image, I found that Bread and Roses was actually a political slogan after being referenced in a speech in 1911 by Rose Schneiderman, and is most associated with a textile strike where women were appealing for both fair wages and dignified conditions.

“The worker must have bread, but she must have roses, too.”

IMDb: Bread and Roses (2000)