Sunday, September 28, 2014

Pinktober or Bust!



Excuse the pun. OK, forget the pun. Let's move on to the real purpose of this post which is Breast Cancer Awareness month that is literally peeking at us from around the corner.

With each year as Pinktober comes and goes, I find myself full of assorted sentiment about the month that continues to show up with more shades and hues of pink than I ever knew existed. Then the gamut of my emotions start to erupt and range from irritation surrounding the pink culture, guilt for the other cancers and diseases out there that need equal attention, gratitude that it's on the forefront of so many minds yet anger towards the lack of funding to find a cure for this disease and especially Stage 4/Metastatic BC that continues to steal lives from us on a regular basis.

So, with this entire spectrum of emotion surrounding Pinktober, I have been in serious contemplation about what I can do. One person, one blog, one survivor and one warrior who has made it through 3 rounds of this disease in the past 20 years. It must mean something right? What I need to do with all of this is the question that continues to occupy space in my brain and heart.

With nowhere to turn, I did what any survivor in my world could do, I reached out to one of my feisty breastiesStupid Dumb Breast Cancer's Ann Marie Otis and proposed a plan, outlined it, and came up with a full month's Pinktober agenda. And by agenda, I mean a serious yet simple strategy to move closer to a cure. And of course she said a thunderous YES! In fact, her first line to me was "I think I love you!" Well, ditto to her and the blueprint we came up with for Pinktober 2014.

But just to bring more light to the overall picture here, we breasties and families out here are well 'aware' of breast cancer so may we please move on? Let's move past the pink purchases and take it to the next level shall we?

And by the way, not a day goes by where we are not reminded by this disease. You may see that we are out of treatment or have our hair back, but the scars are still there: some on the surface and some you simply can't see, they run too deep. We are often going back in for redos on our reconstruction, we continue to contend with daily fatigue, joint pain, the one nipple look, half a nipple, no nipples, tattood nipples (yes, I am saying the word nipples repeatedly and for a reason!) and weight gain due to meds. So please be self-assured that 'awareness' is ALWAYS on the forefront of our minds.

So, this is why we're done with the whole awareness gig and are ready to bump it up a notch - finding a damn cure. So, put your efforts and money where it matters most my friends - into research and support. We've lost too many beautiful souls to this disease and several over the past few weeks and I for one, am starting to get get pretty exasperated over this fact. Don't get me wrong, I am VERY grateful to have kicked breast cancer to the curb 3 times in 20 years BUT, we need to move past not wearing our bras for a month to increase awareness but focusing our efforts on funding quality research and organizations out there who are working with limited bankroll in order to find us a cure. Done. End of lecture.

Oh, one more thing, please stay tuned and hang tight until October 1st. We'll tell what to do, how to do it and where to donate your hard earned cash. It'll be that easy.

In the meantime, I leave you with this funny yet real quote that continues to be my most popular blog post to date - "Yes, their fake, the real ones tried to kill me!"

Enough said. Here we go.

Sunday, August 31, 2014

The Passage to Nirvana



As the Buddhists believe, Nirvana is a transcendent state in which there is neither suffering, desire, nor a sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism.

In a thesaurus, the words that appear for Nirvana are heaven, awakening, bliss, tranquility, peace, serenity, joy and cloud nine. 


I like both. 


And, as someone who has knocked at death's door three times now and when my own time does arrive, I can only hope that I am welcomed into this state of Nirvana with eternal joy and tranquility. 


But why is this end-of-life so heavily on my mind? Oh, so many reasons...


Aside from my own thoughts on this passage of time in my life, I have been sadly reminded these past two weeks about the short and precious cycle of life and death. My breasties that are out there in the fight of there lives, the breastie who just took her wings last week and now the untimely death of a young man. A 21 year old soul that took his wings way too early.


As many of you know, my fave chemo nurse Martha (head Purple Angel) has always been a source of centeredness and joy in my life. But unfortunately, she is the mother of the young boy (Patrick, Pat, Patty Cakes) that entered Nirvana a mere two weeks ago. A boy so full of life and laughter that he brought hundreds of people together to honor his short life and beautiful, vivacious spirit that brought breath and light into so many other lives. And as he was returned to the sea Friday on a beautiful, sunny afternoon, more than 40 fishing boats circled his final resting place as his mom Martha released his ashes into the sparkling Pacific. A place that her son spent much of his time throughout his brief life, surfing, fishing and swimming and now the gateway to his Nirvana.


Death as we understand it here, is a complex process and passage. And those left behind are left with a heavy heart. Is this suffering? Is this Buddhism at its core? Or is it simply a group of words found in a dictionary that describe our final passage? Whatever the case, I personally, am left with a keen perspective yet again on how precious life is and my purpose here. What now? What road do I turn towards? What's my unfinished business? How can I make a meaningful impact in other's lives? What's my next 'set' as Patrick often said? What's your next set? So many questions that are swirling in my mind and heart. All I know for sure right now, is that I am left with another set. One of numerous valuable lessons that I have learned from Patrick and his untimely passing.


So now a final verbal shout out and 'paddle out' to Patrick, a soul who is helping us all figure out our own passages to Nirvana and the invaluable lesson that we will always have one more set to play.




Saturday, July 12, 2014

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"



Sunday, June 29, 2014

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

 

Friday, May 16, 2014

Flashback Friday: Going Bald!


I remember this moment like it was yesterday! My hair suddenly started coming out in clumps so my lovely hairdresser Missy, came into her closed salon on a Monday to take it all down. I liked it so much better than the clumpy hairdo that I was definitely not rocking - really makes a gal look sickly! Weird, liberating and scary all at the same time. But that's cancer for you!

Sunday, May 4, 2014

Every 3 Months...


As many cancer survivors and warriors will confess, getting a diagnosis and living through the day-to-day of treatment, surgeries and doctor's appointments, frankly, yanks one into the present. 'Living in the moment' is truly what we are obliged to do. Whether experiencing the angst that accompanies the cancer voyage or trying to get through the next 10 minutes of nausea while waiting for meds to kick in, living in shorter spurts of life is what's essential for our survival. Albeit a more positive and present way to conduct one's life, it remains a worrisome way to live.

Fast forward to post-cancer, post-treatment, post-everything when we're supposed to be smiling about that fact that "You're done with all of that, right?" - it doesn't stop there for those of us having experienced the cancer adventure. And even though most all the people around us think that everything is back to normal, fact of the matter is, it's not quite normal, but a 'new normal' as many of us claim.

For me, I've moved past living my life in 10min. segments and have now traded it up for living my life in 3 month intervals. Not a victimized or martyr-like statement, just a fact. Ask any of my breasties or friends having endured the Big C and they'll tell you the same thing.

My cousin Chris, for example, lives in 'Every 8 weeks' time frames as he goes to Stanford for labs and scans to make sure "it" is still gone. And while his teenage self doesn't really dig too deep with that time reference, his worrisome mom, Deidre counts those weeks down like an antique hourglass. .....2 more weeks.....1 more week.....labs....scans......trip to Stanford....see the doctors.....hold your breath......good news......sigh of relief.....head back home.....8 more weeks.

As for my every 3-months ritual, I live my life to the fullest 'in between' but still with great apprehension, until the next oncology appointment. I don't count the days or weeks like my cousin does, but I do live my life on a quarterly basis, always knowing in the back of my mind, that I'm getting closer to my labs and a trip to the cancer center to see my oncologist to ensure that my numbers are good and that my lovely Tamoxifen, that keeps those malignant cells at bay, is still working. .....1 more month....1 more week......go for labs.....laugh & joke around with my fave phlebotomist Lee....2 more days.....day of my appointment......back to the cancer center...... walk past the chemo room......get my vitals done......wait for Dr. G. to give me the news....sigh.....breathe..... smile......high five Hil......call my mom with the good news.....wait 3 more months.

Again, this is a more positive way to ensure living in the present, but make no mistake when I say, cancer is the gift that keeps on giving. Well, sort of.


Sunday, April 13, 2014

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.

_________________________________________________________________________________________________

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