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)

 

The Other Shoe

This isn’t the blog post I planned to write today.

I planned to write a synopsis of my recent experiences with the healthcare system, thoughtfully describing long wait times, expensive copayments, lack of communication, (more on all of those in upcoming posts…) but a happy ending.

Unfortunately, that isn’t the blog I’ll be writing today. The proverbial “other shoe” has dropped and we have a change in plans.

Rather, I am writing to tell you all that I recently found a new lump in my chest. After several weeks of wading through my doctor appointment, an ultrasound and, ultimately, a biopsy, it has been confirmed that I have recurrence of my breast cancer.

After weeks of waiting, this news has obviously taken the wind out of our sails and yesterday was an emotional day. The waiting is always the hardest part for me but, now that we know, we can take action. There is still much to do and learn before we develop a game plan. More testing, additional information from pathology… The hope and prayer is that we caught this new lump early and that it is localized to my chest only, but that is one of the things we need to figure out before coming up with a treatment plan.

Luckily, to quote my dad, “I’m in good shape for the shape I’m in.” I’m otherwise healthy and strong. Recent bloodwork was perfect and I feel great. (How weird to feel so healthy and still manage to get cancer again, right?) I also have a dedicated team of professionals who are looking out for me and are, as they say, “all over this.” And, I have an army of amazing people beside me to pray and support.

We got this.

More details to come, but I wanted to let you all know. Thanks in advance for your positive vibes, healing energy, and prayers.

 

 

IMDb: The Other Shoe (2003)

 

Touch of Pink

Ah! Pinktober is upon us. Breast Cancer awareness month drives me a little batty, and yet I can understand and appreciate all that it is. As a survivor, I’m always a bit conflicted — I love it and hate it at the same time. So this is my attempt at putting into words the mix of emotions.

I don’t like to define myself by my breast cancer. It’s certainly a part of me, and I’m grateful to be a survivor, but it’s not all I am. So when October rolls around, it makes me confront how big of an impact it has had on my life in many ways. I wouldn’t be a health coach, I wouldn’t be speaking about it, and I wouldn’t have written a book, if not for breast cancer. I wouldn’t have made diet and lifestyle changes that benefited my whole family, if not for breast cancer. I also wouldn’t have the scars, lingering long-term side effects, nor the ever-present fear of a recurrence.

When all the pink comes flooding through in October, I am grateful for the “awareness”, if it will help women understand their risks and make the necessary changes to be healthier. But, truthfully, how may people see a pink ribbon on a KFC bucket and think, “oh, I probably shouldn’t be eating this”? Or see pink sneakers on a football player and are motivated to get more exercise? Or see a pink ribbon on a beauty product and wonder if the ingredients are safe?

Awareness is only helpful if it is coupled with education. I mean, so people are “aware”… so what? What are they learning about prevention and risks and early detection and types of bc and treatment options? What is being done to drive behavior changes, outside of get your mammogram and do a self breast exam? I did both of those things and STILL ended up with Stage III breast cancer. Did you know mammograms don’t always find it, and not all tumors show as lumps?

I struggle with many of the products that feature pink ribbons. They lure people into purchasing their products, thinking they are doing something good. But often, breast cancer researchers see not one penny from those sales. AND many of those products contribute to breast cancer in the first place. Don’t be fooled.

The thing most frustrating to me about Pinktober has to be the sexualization of the disease. Save the Ta-tas. Save Second Base. Boob Lives Matter. Save a Life; Grope Your Wife. For Tits and Giggles. Feel Your Hooters. Save a Rack. You get the point…

How many other diseases do you know of that are sexualized like this? Call me ultra-sensitive, but I find it offensive. The focus is on the “boobs”, not the woman. Never mind that this disease may kill her, but, heaven forbid, let’s save the boobs. And for those of us who opted not to replace our lost breasts with fake ones, it’s a bit insensitive. Do I matter less, am I less feminine, am I less a woman, because I don’t have them? Could we try to take this a bit more seriously? Right now, it feels a bit commercialized and trite.

I like focusing my energies locally where my money and time feel like they are really helping those fighting breast cancer. In my community, we have Michele’s Ladies in Pink, a great nonprofit that financially helps local women who are in active treatment. If you should feel so inclined, feel free to make a donation to this great organization, or find one in your own community, to feel like your money is having a direct, real, impactful benefit to those in the fight. Certainly, there are a number of good organizations who are focused on research; check out METAvivor (metastatic breast cancer) and Breast Cancer Research Foundation.

When the pink ribbon stuff all started, it was necessary and good. It’s just lost it’s way a little bit. I’m not anti-pink ribbon or what it stands for, after all, my book is “Beyond the Pink Ribbon”, with a pink ribbon on the cover. Pink is one of my favorite colors! I just think it’s time to de-commercialize it and turn it back into something useful. Real education and awareness beyond “breast cancer exists”.

IMDb: Touch of Pink (2004)

The Magnificent Seven

As I sat at the high school football game last night, listening to the marching band play one of my favorite stand tunes, The Theme from The Magnificent Seven, I knew it would be the title of today’s blog post!  “Why?” you ask. Because it’s been a magnificent seven years that I am cancer free!

I will always count this milestone and celebrate it. As my second cancer, breast cancer, clocked in at Stage III, I knew things were serious. I knew there was a risk that I would not see my son grow up, learn to drive, go to the prom, or graduate high school. I can now say I have lived and loved every one of those experiences, knowing that each was a gift. Because seven years ago, experiencing those events was not a given.

Seven years ago was the day of my double mastectomy and lymph node dissection. It’s the day I count as my cancer-free anniversary, since it’s the day my 8 cm tumor, and a few lymph nodes, was removed from my body… along with both of my breasts. The chemo and radiation that followed were insurance policies.

But more importantly, it’s the day that I knew I had to take back my health. I had to assess what I was doing to make my body turn on itself. And so began a journey of changes to diet and lifestyle that continues to this day. I’m hardly perfect in my daily routines, but my plant based diet ~ along with getting enough sleep, managing my stress, being careful about what chemicals go into my body (or rather don’t), and getting some exercise ~ has been crucial to my health. I believe my diet, in particular, is what keeps me thriving and cancer-free.

So here I am, seven years out! Relishing and reflecting in the magnificent things I have been able to enjoy because I fought back. Fabulous travels; precious time with my husband, son, family & friends; writing a book; starting my own business; the birth of our first (and amazingly adorable) grandchild; being able to share my gifts with some awesome nonprofit organizations; and yes, seeing my son graduate from high school and start college, with love and pride in my eyes!

Seven years! I am so very grateful for each day of those seven years, even the tough ones. Here’s to 7 more, 17 more, 27 more! Hell, some days I think I could even do 37 more!

So what changes do YOU need to make to take back your health? I promise, you won’t regret it!

It’ll be magnificent!

IMDb: The Magnificent Seven (1960)

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)

20 Years After

It’s been a very long time (5 months) since I posted anything on this blog. I’d like you to know that, even though I’ve been silent on this page, I continue to write. I am in the process of writing my first book and I’m working towards a release in March. It’s been a labor of love and I’m having a lot of fun with the process. I promise more details in the coming weeks, but today’s post is focused on a major anniversary of sorts.

*****

Today marks the 20th anniversary of the death of my first husband, Ray Noll. As many of you know, Ray died in 1999 after an almost-3-year battle with leukemia. I believe it’s important to remember these anniversaries so that we can all remember who he was, relish in the fun memories we all have, and remind ourselves just how precious life is. Acknowledging his diagnosis, battle, and death helps provide amazing perspective about what’s truly important in our lives.

Those who knew Ray loved him dearly. His sense of humor and zeal for life were contagious and showed up best when he was on a stage with a guitar in his hand. His talents were beyond comprehension (who teaches themselves to skillfully play the mandolin in 24 hours?) and he was the ultimate performer. Every friend he every made remained his friend for life; I don’t know a single person who didn’t love him. He was fun and silly and knew how to be happy.

One of the most fit people I have ever know, when he wasn’t performing on stage, Ray was at karate. A second degree black belt in Tang Soo Do, he was addicted to the hard work and sweat of this sport. He gained a new circle of friends at the karate school, and he was passionate about teaching the next generation of karate students. When I was looking for a picture of Ray for this post, I stumbled upon this one. Ray doing staff work in the back yard.

The three days leading up to Ray’s death were a bedside vigil of sorts, where so many of those friends showed up to pay homage to someone who fought so hard to live. I remember the karate gang showing up in the wee hours of the morning to help see him off. Family, coworkers, childhood friends, fellow musicians… they all came.

It’s interesting that, all these years later, so many people remember him — even those who cared for him during his illness. Just yesterday, I accompanied a friend to her chemo treatment. We were having a conversation with her nurse about the particular drug being administered. I was telling the story of Ray receiving this drug back in 1996 (it was a memorable occasion), and after we got to talking a bit more, it turned out this nurse was one of Ray’s nurses back on Mercy 8E. She remembered Ray well, and we reminisced about all the wonderful people who took care of him back then. When I think of all the people this nurse would have attended to over the past 20+ years, what are the chances she would remember Ray? Well, that’s the kind of impact he had on people, and so I’m not really surprised.

My life has taken a number of twists and turns since that day 20 years ago when, as a 36 year old, I was picking planning out a cemetery plot and planning his funeral. I know that he is always with me and I know that he would be happy that I got to be a mom and that I am pursuing my dream of writing a book. As someone who believes in the power of mediums, I can tell you that Ray always comes through — he’d never miss a party!

On this anniversary, I’d like to ask you to think about him. For those of you who knew him well: have a shot of Sambuca or a Heineken and give him a “salut!” (Heck, even if you didn’t, feel free to send up a toast!) For those of you who did not know him, take a moment to appreciate the joyful moments in your life, whatever is going on right now. Life is fleeting; find the joy now.

(Happy 59th anniversary to my parents in heaven.)

IMDb: 20 Years After (2008)

6 Years

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)