Cancer Patient: My New & Unexpected Career

If there was a job ad on LinkedIn or Indeed for such a position, it would read something like this:

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Job Description
Cancerland is seeking a candidate with an extensive background with cancer. This highly stressful position is offered to hundreds of thousands of cancer patients (past and present) to join a personal medical team of dozens. The applicant is required to have a comprehensive background with an overabundance of doctor's visits, stress, bad cancer news (as in "You have cancer"), a multitude of blood work, numerous surgeries, chemotherapy, bone ache, extreme fatigue, hair loss, nausea, radiation and the like. A strong and positive attitude is required of this position while continuing to navigate your way through your health labyrinth.

Required Experience & Qualifications

• Must be flexible with your daily schedule
• Must not have another full-time job (you don't have the time or energy for one!)
• Must possess strong phone skills and be patient while being placed on hold... for a really long time
• Must not cry in public so as to make others feel uncomfortable
• Must always wear a fake smile on your face and pretend that everything is just 'fine'
• Must be a self-advocate (for those medical naysayers)
• Must have good organizational skills in order to keep all of the medical appointments straight in your mind or.... someone that can help clear the fog in your chemo brain
• Must have good or workable veins

Salary

Yeaaaahhh.....sorry... there won't be one. 

Apply Now

You know the gig. Send your resume or blog link to our medical headquarters in Cancerland with a special note to your cancer like, YOU SUCK! CANCER SUCKS! F*BOMB CANCER! Whatever you like.

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And to give you a small taste of this job that I've been doing off and on for the past 23 years and more recently the past couple of years since I've 'finished everything', let me give you a small sampling of how cancer continues to play a major role in my life on a weekly basis:

Monday: Speech Therapy work (squeeze in appts in the mornings as I can)

Tuesday: 11:00am (acupuncture); 3:30pm (chiropractor)

Wednesday: 11:00am (general surgeon); 1:40 (oncologist)

Thursday: 10:15am (chiropractor); 11:00am (acupuncture); 1:30pm (Infrared sauna)

Friday: 9:30am (chiropractor)

Saturday: 11:00 ('Cancer Counseling')

Enough said, I speak for many out there when I say this new life of mine is not what I expected. Some aspects of this 'life after cancer is done' stays constant and some aspects don't. There are new meds, old meds, discontinued meds, new diagnosis from treatment and the meds, a fractured sternum because of bone density loss, a new diagnosis of osteoporosis, headaches, continued nausea, neuropathy, insomnia, stress, lab work, more lab work, MRI's, x-rays, CT scans, Cancer PTSD, food triggers, emotional triggers, fake smiles, 'I'm doing great' responses, blah, blah, freaking blah.

So the next time you ask a cancer patient, survivor or warrior how they are doing, please keep in mind, it.is.never.over.for.us....because cancer is that epic.

My New Normal is No Hollywood Sitcom!

It's like a bad mashup and an oxymoron, this post-cancer life.

After nearly 23 years of going through breast cancer, this whole concept of a 'New Normal' has been at the forefront of my mind quite a bit. And as a Language Therapist, I am continually questioning the true premise of what this means to me and my life post-breast cancer - x3.

Everyone talks about this in Cancerland and post-anything-adverse-and-traumatic will of course, force you into a 'New Normal' in our lives, yet, I still can't unravel and pinpoint what this literally means for me. Yes, I understand that there's a transformation, and of course, I have a new perspective on life and absolutely, I am beyond grateful to still be alive and kicking, but it's most certainly a struggle as the scars are still there both emotionally and physically - every.single.day.

I often equate my current mental, emotional and spiritual state as an island. My own island. And sometimes when there are other people around me on my island, I still feel so very isolated and reclusive. Nobody truly grasps what it's like to experience such a phenomenon and the impact of these life-changing events, including me.

I frequently vacillate between my thoughts of I'm still mostly the same person and yet I feel so very different and offbeat from those around me. Do people look at me as the girl that has had breast cancer 3 times over the past 23 years? Do they still see me as the same person? I don't really know as people don't really talk about 'IT.' I can't even imagine (nor do I want to imagine) what my Stage 4 sisters and brothers feel like on a daily basis? I know this is nothing compared to their lives yet is quite impactful on mine.

So, where do I go from here? I'm trying to find my old and new identity simultaneously but I don't feel very successful at it. I heavily rely on complete strangers (thank you Ann Marie, Nancy, #BCSM and Liza!) for validation and comfort. They get me sometimes more than I get myself as I hear them saying the exact same thing with confusion, anger and bewilderment.

I don't want to be my cancer, I want to be myself. Yet, it seems slightly unrealistic when I've spent nearly 45% of my life with this roommate I call breast cancer. I ache on a daily basis, my immune system is shot, I've grown weary of the side effects and I'm so tired of daily medical appointments and therapy that both help me yet frustrate me (I had 11 last week!).

So now what? Life on the post-cancer-fence is most uncertain and definitely a contradictory way to live. I suppose I will simply continue to be myself, my new self or some semblance of my former self. Whatever the case, I'm going to address my life in the same way that I've addressed each cancer diagnosis, facing myself in a forward direction and simply putting one foot in front of the other.

Wish me luck.

A Tamoxifen Vacation?! This is So Genius!

That's right, you heard it! I heard it! The words rolled off my oncologist's tongue as if I were in a slow motion movie. "Leeeetttt's puuuut yooouuu ooooonnn aaaaa 'Taaaammmooooxiiiifen Vaaaacaaatiooon' fooor siiiix weeeeks."

"WHAT?!" Just like that? I did a double take at Dr. G. and then to Hil and then to my mom. Did he just say a 'Tamoxifen Vacation?' Excuse me everyone, but I've gotta get home immediately and start packing my bags because I'm going on a vacation!

So, here's how it played out. After months of ongoing side effects with the newest, heightened one of peeing and pooping my pants at home AND in public, I couldn't take it any more. I had fallen into a crater of medication issues, a side-effects-depression and was now at an impasse and I wanted it settled immediately.

As my mom, my partner Hil and I sat in Dr. G.'s medical room waiting for him a mere 3 weeks ago, I was silently reviewing how I would bring up the Tamoxifen issues. My thoughts were swimming around in my head: Stay classy Yog. Put on your big girl pants. Simply explain the concerns. Inquire about alternatives. But as soon as Dr. G. walked in the room with his resident Sawyer, this is how the conversation actually went down:

Dr. G: Hey! Do you mind if our resident Sawyer joins in on our appointment?
Me: No. Come on in Sawyer!
Mom: (reaching out her hand to Sawyer) Oh, as in Tom?
Everyone: Bwahahahaha!!
Me: Sorry Sawyer.
Dr. G: (sitting on his rolling doctor stool looking at Hil) Bad-ass hair cut Hilary!
Hil: Thanks Dr. G.
Dr. G: So, how's it going?
Me: Can we talk Tamoxifen Dr. G?
Dr. G: (Smiling) Sure. What's going on?
Me: (looking at Sawyer). I know I don't know you Sawyer, so please excuse me for what I'm about to say.
Sawyer: Ooookaaay...
Me: (spitting out my words in rapid succession) Dr. G. I'm tired of sh*tting my pants in public places. These side effects are doing me in. But may I say, if there is one place to sh*t your pants in public, may I recommend Walmart? They have everything you need in case this crappy situation happens. (looking at Sawyer) Again, sorry Sawyer.
Dr. G: (waving his hand toward Sawyer) He's heard it all.
Sawyer: Yeah, I've heard it all. This is nothing.
Me: Thanks Sawyer. So, what are we gonna do Dr. G. What are my options?

As the conversation continued, I was quickly trying to read Dr. G's response but didn't have to wait very long before he said, Well, this is no way to live, so let's put you on a 'Tamoxifen Vacation' for six weeks and let's see what happens.

Wha, What?! Really? Just like that? Well, ok then.

After 3 1/2 years of getting to know Dr. G., he knows me well enough to give it to me straight. It's just how we both roll and this time was no different. No beating around the bush, carefully choosing your words and talking to me in a nice, calm, soothing yet annoying voice. Just tell it like it is. And this is exactly why I adore this man. Other than his brilliance, innovation, great sense of humor, open-mindedness, humbleness and nice Stanford background, I just admire and revere Dr. G. so very much!

So, in a couple more weeks, I'll go back to Dr. G. with the good news that most of all of the dreadful side effects are mostly gone and I've had only 1 sh*t-my-pants episode behind me (pun intended), we'll see what's next. He said that there are 2 other meds we could consider as well as a once-a-month shot, so, I'll keep you posted.

In the meantime, I'm feeling pretty darn good these days and excited about now a third round of meds to try to keep that damn estrogen-induced-breast-cancer-feeding-hormone at bay. All in all, I'm just hopeful, and that's good enough for me right now.

Re-Do on the Breast Reconstruction - Yes Again!

I know this sounds redundant, redundant, but yes, this is the 5th surgery for me for this last round of cancer and my third breast reconstruction. And like the professional patient that I have apparently become these past 20 years, I have my pre-surgery juju and rituals down to a science now - juicing, keeping to myself, yoga, a massage, inspirational reading and a mishmash of surgical customs. Makes me feel like I have an ounce more control over something that I truly have zero control over.

As for the video, it will give you an inside peek into the ups, downs and the twisted (as in my case) of what can happen to an implant, post-mastectomy as well as my journey in Cancerland. And as usual, my amazing plastic surgeon, Dr. Julio Soares rocked yet this surgery too! Repositioned implant - check. Encapsulated scar tissue removed - check. Reshaped capsule pocket - check. Breast liposuction - check. A rockstar surgeon - check.

Sometimes, I must admit that these ongoing surgeries, no matter how big, serious or small they may be, still get to me. And because I'm a bit of a pro now, my mind often looks beyond the surgery as I know what lies ahead of me - pain, drains, meds and sponge baths. And of course as most all cancer survivors will tell you, I can't seem to disregard my nervousness about the possibility of my surgeon 'finding something.' (But he didn't - WOOT!).

Lastly, you might inquire as to why I made a video of this most recent journey - it was because it allows me to examine a small but significant segment of my life and what I have conquered. The silver lining in doing this is that it sheds light on my present and all that I have to be grateful for.

Surgery went well, I didn't have drains, my implant only twisted around and the surgery lasted only over an hour instead of the predicted 2-3 hours. My incredible surgeon did his brilliant work once again and this recent journey was by far, the easiest surgery and recovery - see for yourself.

Cancer Cancer bo-Bancer is LIVE and just in time for Pinktober!

www.cancercancerbobancer.com

After weeks of planning, thinking and more thinking, I've finally resolved myself to the fact that I needed to move Cancer, Cancer bo-Bancer (CCBB) to the next level - a website with a cause. Why? Because I want to do something about this disease in terms of research, finding a cure and supporting others out there doing amazing work.

Click on over and take a peek at what we have for this year's Breast Cancer Awareness month and as you'll see once you're there, the big push for me and my CCBB Tribe is our #GiveItUp4Mets campaign to assist in finding a cure through fundraising for Stage 4, Metastatic breast cancer with our co-advocates and research organization METavivor. This is the root of where we need funding in order for research to be successful and most importantly, get closer to a cure or at least a viable treatment protocol for Stage 4/metastatic BC. 

I'm also featuring one of my best breasties, Ann Marie Otis from Stupid Dumb Breast Cancer and her Bravery Bags cause so be sure to check that out. Additionally, donate and learn more about Pink & Blue the movie and Jill's Wish to financially support patients - two other causes that I'm backing for the entire month of October. Just know that literally, every dollar you can donate, counts and collectively adds up to great outcomes for both research and support services.

We're also uber excited about the organizations that we've chosen for the month-long campaign but know for sure, there will always be a cause for you to put your money and time behind! And, if you want your organization to be featured on the website, please contact us and tell us about your cause.

Lastly, I can't thank my CCBB Tribe enough for their dedication, love and support of this project and of me. I couldn't think of a better village to surround myself with and I count myself beyond lucky to have each of them in my life. 

So, with that, go take a peek and tell us what you think? What you'd like to see on the website? And what your favorite inspirational word is on our Warrior Jewelry page.

Now let's go find a cure!

The Joys of Post-Mastectomy Swimsuit Season

Helllooo Summer!

Brace yourselves everyone, swimsuit season is definitely upon us and I've been trying to avoid it with great fortitude, but it's no longer an option as I am gearing up for a weekend on a lake with friends. Phooey.

In less than 4 weeks, I'll be heading to a lake cottage in Eastern Canada for a mini-reunion with some dear friends. And while all I have been daydreaming about are long walks along the water's edge, evening happy hours and laughter, one of my friends e-mailed us all about her excitement of getting her bathing suit on for a swim. $%&#!@*!

How could I have forgotten this part of the trip? My mind was solely focused on friendship, meaningful conversation, fun cocktails on a porch and reminiscing. That was my fantasy anyway, until my friend Barb, who is a tall, blonde drink of water from chilly Minnesota mentioned the whole bathing suit, can't-wait-to-go-for-a-swim conversation in an e-mail. Thanks Barb!

Ugh.

Not only have I not worn a bathing suit out in public in the nearly 3 years since this whole cancer gig #3 reared it's ugly head, but my 'Tamoxifen 30' has kept me far away from the swimsuit sections in all stores. On top of that, the New Girls aren't exactly complete yet and a tad off balance, so now what?!

I've been combing the internet on all the mastectomy bathing suit websites in the hopes of finding that perfect fit that flatters the New Girls and hides the scars, but so far, no luck and I'm running out of time! From Lands End, to Hapari, most of these gals don't exactly look like they've been to hell and back in their Sports Illustrated-esque swimsuit shots. Opposite in fact. With pictures of young women leaping across the sand and bathing suit categories such as 'silicon illusions' and 'secret pockets,' I'm not exactly finding anything out there for this soon-to-be-swimming-lakeside-gal.

Plus, I don't need to be stuffing any chick fillets into my bathing suit top, or wearing a summer turtle neck style suit. I have implants. Check!

I merely need a bathing suit that doesn't show the imbalanced left 'Girl' (Trixie - she's a trouble- maker for sure!) and something that hides the scars along the edge of my left armpit. Is this so much to ask for? Geeze. Is there not a tankini that comes without the fillets?! I have those already! Just give me a swimsuit that covers all the necessary and critical parts without looking like I'm wearing something to cover up something and a suit that doesn't come with an instruction manual.

So here I go, out into the brave, cold, cruel world of bathing suit shopping. And as my mother-in-law wisely said, "Even in the best of times, it's the worst of times"

Caregiving: An Exhaustive Endeavor

Having recently been in the reverse role as a caregiver for just the past 3 weeks, it's given me much food for thought on this subject. Which is why I have been feeling the need to bring this critical aspect of the cancer process to the forefront for another and much needed conversation.

As I reflect back on my primary caregiver over the past 2 years, I have come to realize that because I was in my own living hell of pain, nausea, depression and fear, I couldn't see the signs that my own caregiver who was cracking and breaking right in front of my very own eyes. The only two things I recall when we were halfway through my third breast cancer journey was that she said "I feel like I'm breaking" - so, when my mom came to care for me for a week, my partner Hilary melted in her arms and just started crying as she walked into our home. This should have been a major warning sign for me as she rarely cried. But because I was also crying on my mom's shoulder at the front door, I was in no emotional shape to recognize that Hilary was at the end of her rope and I hadn't even started chemo yet.

Extreme fatigue, fear, depression, hopelessness and many sleepless nights are what she lived with on a daily basis for a year and a half. Fearing what she thought was my imminent death, my partner was barely holding it together and little did I know or recognize this. I could comprehend that it was a tough role to be in, so, I made attempts to rally as many people around me as possible in the hopes of giving her a break: but I can see now that my 'babysitters' as I used to call them, were merely a bandaid on a gaping wound that needed stitches and major wound care. I additionally thought that if I arranged some grown-up 'play dates' for her like walks on the beach with friends, coffee outings, photography events here and there and dinners for us, that it would refuel her and aide in her healing process. But little did I know, she was too far gone by that point.

By the time chemo rolled around, we had already undergone 5 months of biopsies, numerous doctor's appointments, surgeries, second opinions, genetic testing and the whopper of them all, a double mastectomy. Always seeking the silver lining, we were both fooled into thinking that this wouldn't break us in some way or fashion at some point in time, but it did.

Almost 5 months into the black hole of chemo, Hilary had lost 30 pounds and was now wearing a double '00' pant size. She looked beyond exhausted and was commuting and hour-plus to work at a job that was sucking the life out of her. Then one day, she just collapsed on the floor sobbing hysterically at the end of my bed as she was checking in on me. I could hardly believe my own eyes. But, I managed to get myself out of bed, throw on some sweats and drive her to our old doctor who was only working at an urgent care 30 minutes away.

By the time we saw our wonderful doctor after sitting in the waiting room for 2 hours, she took one look at my partner and said "What in the heck is going on with you?!" My partner could hardly speak as she was now just sort of staring off into space, so I jumped in and told our doctor what she had been doing for the past 10 months. Beyond concerned and worried, she ordered Hilary to come back in 2 weeks to check up on her, lectured her to eat more and started her on some much needed meds. Neither one of us had ever taken any anti-depressants before as we were more of the meditate-and-heal-ourselves philosophy, but, she had already hit the wall and it was time to change things up - A LOT!

What we discovered a month later and a second collapse at my bedside, was that hindsight was certainly 20/20. What should have taken place during those 10 months was that we should have arranged more back-up caregiving for my partner. More than we could have ever imagined. And while I was receiving the support and care of so many, little support and caregiving was going to Hilary. Instead, people simply made comments about her weight loss and then immediately focused on me. And while I needed care as well, the person that really could have used some counseling, friendship and support was her! And it wasn't that she didn't have any, she simply didn't have the amped up or authentic level that she truly needed while other 'friends' told her that they 'felt' that I was going to die and that it was my time (insert waiving, angry fists in the air here!!).

Moral of this journey..... pay attention to the caregivers, be choosy about who you surround yourself with, don't be afraid to talk to other caregivers and reach out to a caregiver yourself, because trust me when I say, they won't be able to. It should also be a time when a caregiver visits their own physician to discuss what's on their plate and consider some medical help. And as for counseling, HA - it's an understatement to say that caregivers could use some sage advice and a listening ear from a professional and/or a support group. Heck, we're still in 'cancer counseling' so that we can process the past 2 1/2 years.

On the 'silver lining' side - I'm happy to report that my partner has gained those 30lbs back, is now working for an amazing company with fabulous (normal) people and is smiling once again. We have our weekly Tuesday check-in where we openly and honestly share where we are on this continued journey. But don't get me wrong, we still live with daily fear but it's significantly less now and we continually thank the universe each day for our lives, each other and another day to be grateful for. A new perspective indeed. 

In the end, there are resources (see below) out there for caregivers. And be sure to see what your local cancer center offers as many have several programs for both patients and their caregivers. 

In a nutshell, we are relieved and happy that we survived walking through the fire and are now better versions of ourselves. Thank. You. Universe.

Caregiver Resources:
   Caregiver Action Network 
   Cancer Care
   Cancer.Net
   American Cancer Society
   Rob Cares - Caring for Caregivers

 

Dear Breast Cancer Age Discrimination, You Still Exist?

Here it is my lovely friends, breasties and survivors; an update and my first (and potentially only) response that I received about my age discrimination inquiry with the organization Bright Pink. I had previously decided not to mention their name on my most recent blog post, but I've since changed my mind. I now find it imperative to state their name as I would not want others to walk down the same path as I have in trying to demystify this breast cancer age discrimination matter. So, read our exchange of e-mails and as always, be sure to comment with your thoughts or list those organizations and people that you have found helpful on this journey. Their correspondence is in Bright Pink! Mine, is well, not so Bright Pink.

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Hi Dee Anne, 

Thank you for your note and I apologize that you had not previously received a response to your inquiries. I am happy to explain why we are focused on preventive breast and ovarian health for young women specifically. Bright Pink was created to fulfill a void in the women's health space. While there are organizations out there that focus on survivorship, there was not a resource for young women who had not been diagnosed. These women have the power to be proactive with their breast and ovarian health. That's where Bright Pink comes in. We focus specifically on prevention and early detection of breast and and ovarian cancer in young women and provide support for women at high-risk for these diseases. In order to be successful in our work, we have chosen to maintain this specific focus. We are not so naive as to think we are good at everything so when someone reaches out that could better benefit from a partner organization, we work hard to direct that woman to the best resources available for her specific needs. This allows us to stay focused in our area of expertise - education and support for young women - and allows other groups to continue to succeed in their specific areas.

Our support programs offer guidance, community and camaraderie for young women who have not been diagnosed but who are at high-risk for breast or ovarian cancer due to a strong family history and genetic predisposition. As a 3-time survivor, your journey has varied greatly from these women, and you should receive specific support tailored to your unique experience. We would never turn anyone away from an educational perspective - all of the information published on BrightPink.org is open to anyone and everyone who can access it - but when it comes to support, you deserve an organization that can best serve you as a survivor. 

Many qualified partners who specialize in survivorship support are listed on our website here -http://www.brightpink.org/ive-been-diagnosed/. 

Thank you for reaching out, and please let me know if we can help in facilitating an introduction to another organization equipped to support you as a survivor. 

Best wishes,
Eden

_________________________________________________________________________________________________

Hello Eden,

Thank you for your return response and email regarding my inquiry about your age limits with Bright Pink. It is much appreciated as my last email did not receive a response.

With regard to the main focus and message of Bright Pink, I am in complete agreement that there is a need and a void that has been filled with the Bright Pink organization. And as a 25 year veteran educator, I understand the need for education, prevention, awareness and self-advocacy. Your message is clear in that sense and Ms. Avner's brave decision to have a preventive mastectomy was indeed both an intelligent and courageous choice.

My confusion, however is with the mix of both prevention and survivorship with regard to all ages of individuals. And while I agree that prevention is key for saving lives, the age cutoff, in my opinion, is extremely exclusionary. If the notion is to save lives with this disease, then age is a factor that doesn't belong in the mix. I equate that to having a breast cancer-based organization only for specific ethnic backgrounds - a puzzling notion at best. And as we all know, this disease crosses all gender, ethnic and age boundaries. I shutter to think about a 46 year old woman seeking support for prevention should she identify as high risk. Would you turn her away as you did me? 

Additionally, I am further confused about your message that specifically focuses on prevention and yet you feature breast cancer survivors and Fab-U-Wish Winners who have also been diagnosed on your website. So, in light of this, it does appear that survivors are welcomed to Bright Pink - well, as long as they're between the ages of 18 and 45. 

And with regard to Bright Pink teaming up with the Kentucky Derby SURVIVORS Parade this year, I find it odd and ironic that although your 'specific focus' is with 'YOUNG women' - Bright Pink is accepting funds and donations on behalf of the 140 survivors participating in the parade to which many are clearly over your age bracket of 45. Why would you welcome funding for ALL ages when your specific focus is on YOUNG women. Such a mixed message and disconnect in my opinion, wouldn't you agree? But, in case you're unclear, here is verbatim, what is documented on the Kentucky Derby website:

Kentucky Oaks 140 Survivors Parade

Thank you for nominating and sharing your survivor’s story, voting for your favorite and most inspirational story, and for donating to Bright Pink on behalf of your favorite nominee. Your participation and your donations will help to educate, support and empower young women nationwide in prevention of breast and ovarian cancer. You can still donate to Bright Pink, now!

So my hope, is that in the future, Ms. Avner will consider opening up prevention, awareness, camaraderie and advocacy for ALL ages of individuals that is inclusive of both genders. I would like to think that the main goal should purely focus on saving lives.

In terms of my own journey as a 3-time survivor, it has been a unique experience and there are no organizations to date that focus on that, which I am fine with. I am a medical anomaly to not only the breast cancer community but to several teams of doctors. I already don't fit into a group so I continue to reach out to groups that reciprocate support in spite of my uncommon path. And as you so politely stated, I do deserve an organization that can best serve my needs and clearly I am not welcomed at Bright Pink. And thanks for your willingness to help facilitate introducing me to another organization "equipped to support me as a survivor" - but I believe I can handle this independently as this ain't my first breast cancer rodeo!

It is also transparent that Bright Pink is simply not an organization for this 'hereditary, 3-time, breast cancer survivor.' I had hoped that I could reach out to Bright Pink personally as well as, stand behind this organization on behalf of others in need, but it is clear that it is simply not a fit for me or many others. So, best wishes to you all with your specific focus, but this gal is moving on.

Lastly, if you'd like to find out more about my 'unique journey,' other organizations, films and individuals, I would welcome you to visit my blog at http://cancercancerbo-bancer.blogspot.com/. Here, you will also find my own campaign and education for my 'breasties' of ALL ages on my blog for their reference so they can make the best decision for which types of organizations best fits their needs. Oh, and you'll also find our correspondence on there as well, because as we all know and as Bright Pink states, 'Knowledge is Power!'

 

Dee Anne Barker, M.A.

Nothing But Blue Skies

Is There Breast Cancer Age Discrimination?

Recently, I came across an organization that is doing some great work with regard to supporting patients and warriors, disseminating valuable information and even has a celeb tied to the organization as their spokesperson. 'On a mission to reach millions of women between the ages of 18-45...'  Well darn-it-all, I'm 50-freaking-3! But wait, I WAS 31 and then 36 for my first two breast cancer diagnosis, does that count?

Immediately, I must confess that I felt discriminated against and slightly disturbed by their age cut-off. I mean, even most job applications don't discriminate against gender, age, sexual orientation, ethnicity and the like. Why this? Why now? Why with breast cancer?

So, I did what any advocating, 3-time, breast cancer warrior should do....I wrote them, inquiring about this head-scratching cancer paradox. Furthermore, I saw that they were teaming up with the Kentucky Derby's Survivor's Parade this year to which one of my fave breasties, Jill Brzezinski-Conley is a nominee to walk in (please vote for her - she deserves it!), so I thought I would investigate the age issue a tad further. Now Jill falls well within their specified age range, but I did happen to notice that a few of the other nominees clearly fall out of the top of their age bracket of 45 which got me to thinking... will this organization not speak to or support these women as they partake in the parade? Will they be shunned because they happened to have been diagnosed past the ripe age of 45? Will they not receive the recognition that they so deserve? Will they not be given their parade gear because - ugh, cancer picked on them way too late in life? And even more importantly, what about my breasties that are beyond the 45 year age range that are terminal and in the fight of their life - will they not receive the respect that they've earned and should have?

Hmmmm.... maybe it's just me, but does any of this make sense to you?

So, now I'll see if this popular organization that I actually wrote 6 months ago inquiring about their wish-granting program, will AGAIN, ignore my inquiry and kick this 53-year old cancer warrior to the curb? Will I not receive, at the very least, a respectable response? I'll keep you posted.

In the meantime, let me switch gears and flip this annoyance around and refer you to some awesome, non-age-discrimination organizations and peeps who I know you will find supportive:

Stupid Dumb Breast Cancer
Talk About Health
Facing Cancer
Breast Cancer Social Media 
Healthline

Lastly, feel free to add an organization, group or any peeps that support ALL breast cancer survivors in the comments section. It's important for us to help each other during the experience of breast cancer and to band together, no matter what.

Breasties! Then & Now

Friends come to us at the most unexpected times and this friendship is no different. We met in the chemo room last year and soon realized we had much in common. Lorena, a spitfire in her own right, resonated with me from the second we met across the room, tethered to our chemo chairs and poles. Her spirit came across loud and strong! She had an obvious fire in her belly with her cancer-picked-the-wrong-girl attitude and an immediate bond was formed.

We have the exact-same line-up of surgeons and oncologists down to our second opinion docs. She's a repeat offender with breast cancer like me (her 2 rounds, me 3) and we both speak other languages. Most importantly, I knew that we both shared the gonna-have-a-knockdown-with-cancer mentality.

So, when we reconnected recently outside of the chemo room for coffee, we dove right in where we left off (minus the chemo poles!) a year ago. First order of business, our hair! I'm sure people in the coffee shop couldn't figure out why two gals hugged each other and then immediately started touching each other's heads. "Yours is so soft!" "Mine grew in coarse." "Mine grew in curly." "Mine sticks up!" "Mine has grey now." Laughing through it all, we sat down and were off and running. I even noticed that 3 different people sat down next to us but then quickly changed tables. We didn't care. We both looked at all three of them and then quickly returned to our own world and chatter.

In one hour, we managed to chitchat about several items on our mental agenda. Minus a few chemo-brain moments on both our sides, we jabbered on about our new energy levels (or lack thereof), nutrition, our achy joints from meds, combating fatigue, newly diagnosed breasties and the like. But mostly, we just connected about life, our immense gratitude to be alive and kickin' and how we need a damn cure for this disease. We talked about how we both know the statistics looming over our heads but how we both have chosen to ignore them.

The takeaway was that I walked away from my breastie-coffee-date feeling more like myself again having connected with my sister from another mister. Having chatted it up openly and honestly about how we're truly feeling without judgement and minimizing from anyone else really elevated me. We didn't complain, we simply spoke about the facts and how we'll keep moving forward in gratitude. In a nutshell, we collectively smiled with thankfulness for each and every day.

So, thanks to Lorena for your kick-a$$ attitude, your contagious rockin' spirit and for just being you. Note to self, must have more coffee dates with you!

Lastly, thank you cancer for this friendship; a definite silver lining with round 3!

Let's Talk Tamoxifen!

Amid all of the humor and poking fun at breast cancer that I have thoroughly enjoyed, this is one aspect of the aftermath that I personally, don't find humorous at all. In fact, I often find myself between a rock and a hard place when it comes to the drug that is keeping me alive and free of future breast cancers. Between the side effects and the long list of pharmaceutical interactions, it's an ongoing balance of emotions based upon my daily physical wellness. No benedryl, no pineapple (which I just ate for breakfast this morning!) and no antidepressants. Seriously? Because that's exactly what one needs in this situation. I mean, as if I don't read labels enough, now I need to look at what foods, meds and herbs that contain estrogen.

And here's something that I know we can all relate to, those horrible commercials about meds that will help you sleep, lose weight, enhance your mood, etc. BUT, the 'Oh by the way' disclosures (insert your best commercial voice-over here) can really mess with your head... Tamoxifen may cause cancer of the uterus, strokes and blood clots in the lungs or legs. These conditions may be serious or fatal so be sure to seek immediate medical attention if you develop symptoms such as weakness on one side of the body, slurred speech, sudden vision changes, confusion, shortness of breath, chest pain or calf pain and swelling.

Really? First let me say that I have my dad's calves which have always been a little on the larger size. I also lose my breath walking up stairs and yes, my vision has definitely changed. As for the confusion, uh, helllooo, I had chemo! We're all confused now - but, that's a separate blog post. And as for the long list of side effects that have me searching the internet well into the night, I get it. Hot flashes - check. Weight gain - check (I like to call it the 'Tamoxifen 30!') Fatigue - check. Hair loss - check. Bone ache - check. Migraines - check.

But my point is this - many of us are taking this daily drug for at least 10 years, if not a lifetime, that may very well be a life-saver. So, there's got to be an emotional solution to my daily potion of life-saving medication. I've got to befriend my little white pills, be grateful that I even have the opportunity to take a substance that keeps me upright and above ground. So, gratitude it is.

I am truly grateful for my Tamoxifen, I am grateful that I can get up each and every day and function, I am grateful that my side effects are not debilitating, and I am grateful that I have other meds to counterbalance the extreme side effects when they hit me hard. Pure and simple, I am just so grateful.

So, in a word, 'thanks' Tamoxifen.

Throwback Thursday: The Art of Doing Nothing

Having spent an excessive amount of time in bed over the past couple of years, I can now say that I truly know what it's like to have some R & R. Not exactly the kind of relaxation that I would recommend to anyone, but it is interesting how one can spend days and hours at a time doing, well, nothing really. I, for one, have always been a gal on the go but when you have no energy and are fighting nausea, the time I lingered here was actually quite peaceful and serene.

I didn't have the mindset or the focus for books or even movies, so I spent much of my time either on my iPad or simply staring out the window looking at the sun and the moon from my second story bedroom. I even began to relish the sound of wind and palm fronds waving back at me while I laid there for sometimes weeks at a time without ever going downstairs. A lot of time, a lot of silence, a lot of nothing.

As you'll see in the background, I made an inspiration board that sat on top of our little dog's crate that I created to remind me of life and people outside of my room and cancer. And when people started sending me tokens of love in the form of pictures, cards and keepsakes, I thought what better way to stay connected to myself and life. I genuinely treasured staring at my board of pictures, inspirational quotes, my past aunt's artwork, spiritual tokens and my dad's ashes in a leather pouch for many minutes at a time. It was often the first thing I looked at in the morning and the last thing I saw at night.  So, when you really think about it, it was time well spent. And in some strange way, I secretly wish for those days again - not of illness but of quietness, stillness and peace.

Pink & Blue Documentary - The Updated Colors of Breast Cancer

Click to play - Video courtesy of Alan Blassberg

Although pink and blue combined make my favorite color purple, separating out these two colors for an extremely important cause is what's at hand here.

As we all know, October and the rest of the year is full of various shades of pink - pink ribbons, pink pens, pink mixers, pink calendars, yet this bright splash of color has yet to find us a cure. As for blue, it's just now stepping forward as a primary color to pay attention to and for good reason. No blue blenders and ornaments have hit the market yet, but I do believe that it's time to share the spotlight with pink and tell the men's side of this story too.

So, when I came across a film campaign and movement documentary last week, called Pink & Blue, I contacted the filmmaker immediately to see how I could help. His personal story and project grabbed my attention from the get-go and tugged at my heart strings which is why I felt compelled to share it with all of you.

In essence, an all-in-one filmmaker, brother and boyfriend, Alan Blassberg is now on a mission to get his film up on the big screen and for good reason: to inform and arm others with the knowledge of breast cancer and the BRCA gene for both women and men. And as Alan says, it WILL come into your life at some point in time - this I know is true. It did for him by touching two, very important women in his life (at the same time!) - his sister Sammy and his girlfriend Stephanie. And if that wasn't enough, he lost his beautiful, warrior sister Sammy after a 3-year battle with breast cancer. His story also shares that his grandmother took her wings from breast cancer two weeks before he was born. He is now concentrating on his own health as he tested BRCA positive and his film will poignantly take you on a personal and educational journey through his world of living among breast cancer and 'the gene.' Because, even though we have learned so much about this disease over the past decade, there is much more to know which Alan's film will attest to. Chock-full of personal stories, top experts in the field of breast cancer and many shocking statistics that may even affect you, this documentary is a must-support and a must-see!

Because Alan and his two sisters tested positive for the BRCA gene mutation, shining the spotlight on this critical film and and the new color of breast cancer - blue, has become his mission. So, please, for your own sake and the health of your sister, brother, aunt, uncle, niece, nephew, mother, father, grandmother and grandfather, click on over and watch the Pink & Blue trailer and then please make a donation. Every dollar really does count. Be sure to show your support as well by following Alan and this project on both Twitter and on Facebook.

So remember, pink, blue, female, male, genetic or hereditary - this disease still needs our attention all year long, not just during October. And don't forget about blue. The men in your lives need to share the limelight with pink and have their voices heard.

Nothing But Blue Skies

Inspired by one of my breasties, Wendy Nielsen and the title she gave my guest post this month, I thought I would sign off Pinktober with the color BLUE. Blue for my fave new song Nothing But Blue Skies, and for my fresh outlook on life. This beautiful color is also a tribute to the men out there trying to get some recognition and funding for breast cancer with films like Times Like These. And since I'm a bit further out now from round-freakin' 3 of the Big C., I thought I would sum up how I feel (at least for today) with Irving Berlin's song, Blue Skies. Little did this great, Russian-American composer know that 87 years after he wrote it, some random breast cancer survivor would adopt it as her new anthem in life. So, thanks Irv - much appreciated! And yes, there are Nothing But Blue Skies, Smiling at me! 

Blue Skies

by Irving Berlin

I was blue, just as blue as I could be 
Ev'ry day was a cloudy day for me 
Then good luck came a-knocking at my door 
Skies were gray but they're not gray anymore 

Blue skies 
Smiling at me 
Nothing but blue skies 
Do I see 

Bluebirds 
Singing a song 
Nothing but bluebirds 
All day long 

Never saw the sun shining so bright 
Never saw things going so right 
Noticing the days hurrying by 
When you're in love, my how they fly 

Blue days 
All of them gone 
Nothing but blue skies 
From now on 


I should care if the wind blows east or west 
I should fret if the worst looks like the best 
I should mind if they say it can't be true 
I should smile, that's exactly what I do

A Stupid Dumb Breast Cancer Knockdown!

One of my fave breast friends Ann Marie Giannino-Otis, over at Stupid Dumb Breast Cancer is going the distance once again by taking a jab at breast cancer on the cover of Syracuse Women Magazine. Her cover story of course, not only details her effervescent personality and warrior ways, but her philanthropic means of helping others through the world of cancer. She has a strong following and holds fun and purposeful events on a monthly basis for her non-profit Stupid Dumb Breast Cancer - SDBC (her son's name for breast cancer).

When I first came across Ann Marie on her Twitter page I almost "fell off my unicorn" (her words, not mine) reading all of her tweets. With kind words, hilarious sayings and her fundraising efforts, I was hooked!

Keeping it real, meaningful and sassy, Ann Marie will stop at nothing when it comes to advocating for herself and others. Insisting that people know the real side of the breast cancer journey, her posts on the SDBC Facebook page are guaranteed to be full of left hooks and power punches. I've seen her take on numerous people making light of this journey and she'll have no part of it. Sassy but heartfelt, she'll take on anyone that attempts to knock down any of her girls and followers.

So, follow her, like her (she's VERY likable!) and get to know the real side of breast cancer - pictures and all! And if you cross her, you can be sure that she'll challenge you to a round of You vs. Stupid Dumb Breast Cancer and Knock.You.Out!

Male Breast Cancer Documentary: 'Times Like These'

When I first came across these two guys, my heart just sank and immediately took me back to the early 90's to a time when a friend/colleague of mine (also named Bob) was diagnosed with breast cancer not too long after my first diagnosis. We were instantly bonded in that breast cancer way even though 'One-Boob-Bob' (his own nickname!) and I were different genders of the same cancer. We did cancer-survivor fashion shows together, fundraisers, and walks to raise awareness for the masses, but frankly, he was the only guy out there among a sea of women. And so, my first introduction to male breast cancer was born out of Bob's diagnosis.

Fast forward  20 years and a few weeks ago when I came across these two guys, Bill and Bob, on their Facebook page. I was captivated instantaneously and thought, FINALLY, someone is addressing the male side of breast cancer! The side that few are aware of or maybe even ignore. But it's for real, so here are a few stats that may surprise you but will aide in your knowledge of this female dominated cancer during the annual October Breast Cancer awareness campaign:

• There are 2000 new male breast cancer cases diagnosed every year
• 25% of men diagnosed with breast cancer will die
• Men of all ages can be affected with breast cancer

So, let's cut to the chase so you'll know how to help with Bill and Bob's campaign. First,  click here to watch the trailer of two extraordinary men who were complete strangers but were brought together through their breast cancer diagnosis. Secondly, please donate any dollar amount that you can on their Kickstarter campaign page so that they can finish this very important film 'Times Like These' and generate more awareness about male breast cancer. Lastly, know the signs and risks of male breast cancer for either yourself or loved ones.

There are only 23 more days to help fund this campaign! So, please help spread the word by forwarding this blog post, their Facebook page and their Kickstarter crowdfunding page! 

GO! DONATE! NOW!

I'm Twalking Twitter People!

This post has been long and coming as I've vacillated for months about coming out of the Twitter closet (there I said it). But to my credit, I've been running a Twitter feed for the past 2 years for two business' and frankly tired of not being able to #follow who I damn well wanted to. Instead of being PC in Twitterville, I decided I wanted my own, personal account so that I could get all the latest and greatest deals from Groupon, Travelocity and track the food trucks in L.A. just for fun.

But that didn't last especially long because within a month of getting my own big girl account, I received news that I had cancer. So, my elation for Groupon deals swiftly wained as news of this third diagnosis was a total buzz kill. Instead I sheepishly started seeking out resources for breast cancer and started to connect with some fellow survivors. Next thing you know I have more than 600 followers (people who follow me) and Monday night live chats for my online support group #BCSM (Breast Cancer Social Media).

My language swiftly changed from friending and liking on that other social media website with a lowercase 'f' to hashtags and followers on my new social networking platform with the little birdie. With 140 characters at my fingertips, I rapidly learned that hashtags like #cancersucks and #breastcancer would lead me to a community of sassy warriors and people in my malignant new world.

So vastly different from my first diagnosis of getting into the car once a week to drive to the nearest cancer center support group, I have come to find solace and anonymity with my online gal-pals going through breast cancer of all different stages. I even found a '3-peat offender' like me and an immediate twriendship was made.

We have supported each other in ways that I never expected. We're blogging about this prolific disease, discussing the politics of the Susan G. Komen Foundation and debating about the out-of-control pink culture of finding a cure for all of us. With names like 'thescarproject,' 'bustedfd,' 'ItsTheBunk,' 'BoobsOnTheMove,' 'LovelyKatieLumps,' 'CancerHAWK,' 'ChemoBrainFog,' 'StupidDumbBreastCanc' and 'TalkAboutHealth' and 'AFreshChapter' - we're connected in a way that is frankly, safe, bold and downright authentic.

Wishing each other good luck on important procedure days and offering up helpful hints for chemo, surgery and doctors, we're running in a strong pack. With no time to waste, the 140 character restriction allows us to get straight to the point. And when we're mad as hell at times as we've lost a few gals this past year to this beast of a cancer, we're all trying to take charge of our own journeys in a virtual and supportive fashion. And for this, I am eternally grateful to my kindhearted and spirited tweeps.

So, follow or hashtag me @DeeAnne_Barker to catch up with me in the twittersphere! In the meantime, #peaceout.

When I Was Sick (Guest post by Dena Taylor)

**Welcome guest blogger and my 500th Twitter follower, Dena Taylor. I wrote her and asked, "As my 500th follower, would you be willing to write a guest post from your point of view with cancer?" and she said "Wow! Yes!"  and... "Congrats on your 3-time victory over emeffing cancer!" And there you have it, a new 'Breast Friend' to add to the lot of us. Thank you, Dena!

_________________________________________________________________________

“What movie are you guys gonna watch?” I asked my friend Alice’s 5-year-old daughter Claire on a recent visit.

“Despicable Me,” said Alice.

“The wha?”

Claire grabbed the DVD case out of Alice’s hands and held it up for me to read.

“Ooh, ‘Despicable Me.’ That looks fun!”

“Yeah,” said Claire. “They’re bald. Like when you were sick.”

~~~

One time, in my early 20’s I drank too much Bacardi 151 and Diet Coke and was sick for three days. Another time, while on a fancy boat in the Caribbean, I got seasick during a storm and barfed into a bidet. I was sick to death of hearing Gnarls Barkley’s “Crazy” when it played on the radio for the 50-millionth time and was once so lovesick, I dropped a pant size. Friends accuse me of being sick in the head, usually when I drop the word “moist” into a conversation or tell the story about what I found on the wall of a port-o-potty at a 5k event in Seattle.

There have been more serious sicknesses too, the worst of which required emergency hospitalization, once for a ruptured appendix and once for a small bowel obstruction, likely the result of the former’s post-op adhesions. But never, in any of the aforementioned instances, have I not had hair.

So what, then, was wee Claire referring to? That would be the one and only time I was bald. But it wasn’t because I was sick. In fact, in September of 2006, I felt particularly healthy and happy — randy, even — knowing that my best friend and I were just weeks away from celebrating my 40^th birthday in Italy where we would surround ourselves with as many sexy Italian men as we could find. I had no idea a cancerous tumor was growing in my breast. But a routine mammogram and subsequent biopsy confirmed it, prompting me to swap our festive trip to Italy for a somber trek to the OR. It was an agonizing decision but having had microcalcifications in the opposite breast three years before at the age of 36 and a mother with a history of DCIS, a bilateral mastectomy with immediate reconstruction was the only choice I could live with.

Then, in early November, thinking the worst was behind me, and reconstruction nearly complete, I got more bad news. I scored “intermediate” on the Oncotype test, a genomic assay used to help determine the likelihood of recurrence and benefits of chemotherapy. After consulting with two oncologists, I ended up enduring six tri-weekly rounds of chemotherapy (FAC + WBC boosters). My first infusion was after Thanksgiving and I was cue-balled in time for Christmas.

Hair loss was a side effect of chemo. So were the headaches, bone aches and nausea I felt in the first days after an infusion. And the fatigue, brain fuzz, digestive calisthenics, persistent watery eyes and a runny nose in the remaining 16 or so days of each cycle? Side effects. I expected them, planned for them and managed them. But I was never sick.

So chemo sucked worse than back-to-back episodes of the Beverly Hills Housewives and after eating a few salmonella burritos while wrapped in a Snuggie of mold spores but you were never “sick?” C’mon.

I know and I’ve been thinking about my post-cancer refusal to equate those side effects with being sick ever since I was likened to a bald, yellow, cylinder-shaped homunculi. What I’ve realized is this: Of all the health challenges I’ve faced, it’s cancer that has scared me the most, and thus it’s cancer I want to identify with the least. If I yield to it in any way, even by saying I was sick, I’m giving it more power in my life than it deserves. I don’t want to think about it every day or spend precious time worrying about it coming back. There are too many other things vying for my attention, like traveling to Peru, sipping on a Moscow Mule while catching up with friends, that cute guy on the running trail. When I do think about it, I want to focus on how I confronted it (with support, determination and some luck) versus dwelling on what I suffered.

People are going to describe my cancer and chemo days as the time I was sick. And that’s okay. It’s another opportunity to share my experience, generate awareness and support someone new in navigating the scene. But the squat, yellow, bug-eyed minion comparison? That could be a problem.

~~~

Dena is finishing her memoir on her cancer experience, which includes plenty of descriptions of being sick. It does not include the story about what she saw in the port-a-potty. That story is by special request only and requires a signed waiver because it’s really gross. You can also find Dena on Twitter @DenaTaylorTime and on her website, www.denataylor.com