Where did look? My top 5 list.

Top 5 sites I used when trying to obtain clarity and make an informed decision.

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In 2017 I was diagnosed with Stage IV Triple Negative Breast Cancer. At the time the only standard of care for the type of MTNBC that I had was chemotherapy. A lot has changed since then. Having an understanding of my particular treatment goal was key, when I began my search for information to help achieve this feat. When it came to obtaining information (regarding what my options were) I did a tremendous amount of research. Yes, I tracked down research oncologist and had in depth conversations about what I had read, but where id I start? How did I find some of the research that led me to oncologist, testing, genomic testing and eventual a life extending clinical trial? Well, I looked at a whole lot of stuff. That time spent digging, more than likely saved and extended my life. Below is short list of my favorite go to sites when I was desperately searching for leads and answers. Information is power and when it comes to self advocacy, it is one of the key components.

• Inspire.com - An online support group for patients and caregivers. What most struck me about hanging out in this chat room was the amount of support and information one could receive. I was pleasantly surprised at some of the knowledge my peers in the Advanced Breast Cancer group had. Subjects such as symptoms, insurance, clinical trials and research were widely discussed. Users also had the option to download a resource “The Insiders Guide To Metastatic Breast Cancer” by contributor. Patients and caregivers are given the opportunities to participate in focus groups, and webinars for free.

• Cancer Commmons.org- When I was in search of articles about patients and their methods in entering a clinical trial Cancer Commons was one of my go to sites. Why? First it was important to get “on the ground” patient stories of what it was actually like to plan, execute and obtain entry into a clinical trial. The added caveat was the ability to get 1:1 attention and consulting for free from a board certified oncologist. I took advantage of chatting online with a oncologist regarding my specific needs just as I was about to start the clinical trial. I was given solid advice on questions (provided by the oncologist) to ask the trial investigator in regards to safety and monitoring, because I would be participating in a Phase !b trial (that contained two immunotherapy drugs, one of which was experimental). As I advanced in the trial, my Cancer Commons oncologist continued to ask for feedback and monitored my progress as I moved along in the trial. Cancer Commons has continued to innovate since I’ve last used them. Cancer Commons has added additional services for patients and caregivers, which is a huge indicator that the administrative team is keeping a watchful eye on patient needs and figuring out ways to support the patient centered vision.

• Clinical Trials.gov - Now I know this choice as a favorite will probably go over as “Say What Now?”, but Clinical Trials. gov served a very important purpose. Although the site can be very confusing for the average person to use, when trying to get a clear indication of what trials are available, Clinical Trials.gov showcased something that was even more important to me and that was the exclusionary criteria. In simple terms exclusionary criteria are the list of things and circumstances that will keep a patient out (no access) to a particular clinical trial. In my case it was not just about finding the trial, but having a very clear understanding early on the value of exclusionary criteria and making sure that I did not do anything moving forward (at the time) to keep me from being excluded from a clinical trial. For example in 2017, for several of the clinical trials I was looking at, it clearly stated that if a patient had more than two or three lines of treatment (chemo, radiation) or had already been treated with pd1 inhibitor (immunotherapy) that the patient would be excluded from the trial. This information was key on how I decided to move when searching for a clinical trial (I knew that for my case I had to enter a trial quicker, because If I did not, their was a strong possibility that I would be put on chemo, and not be able enter the trial). There are plenty of sites that have popped up since then, that help patients click thru trial choices easier, but being fully informed about the exclusionary criteria is key and Clinical Trials.gov includes that.

• Cure Today.com - When I was looking for the latest research articles on metastatic triple negative breast cancer, links to advocacy groups, videos and patient perspective articles, Cure Today was and is one of the places I check into.

• AASCO Post.com - Now I know, some folks reading this would be like “Really Karen?”, but I have to be authentic. The American Society of Clinical Oncology can be a great place to get information. The research papers, updates, webinars and education that come straight from the oncologist. Sure, I know, most of the information can be pretty complex, but if your up for it take a look at their site. AASCO also has a “family” of sites that anyone can take a look at and for patients and caregivers that site is Cancer.net. Clicking on the the Cancer.net menu bar one can choose from a number of useful pages under the “Coping With Cancer Tab”. Topics like managing emotions, talking with family and friends, finding social support and information are just a few of the issues that are addressed.

So now that I’ve covered some of the sites I used to gain education and information, I will update my site with a few of the useful online resources that I would recommend for different scenarios. Since 2017 a lot of savvy and smart individuals have put together sites that are very useful when looking for an assortment of things (diet, financial support, genomic testing, clinical trial navigation). I’ll put together a list and give you my opinion on how user friendly these sites are. Until then..

Karen

Food for thought #2 - Clinical trials, should the discussion happen early or late?

Why do you think there is such a mysterious cloud around the discussion of clinical trials?

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As you might know I successfully entered a clinical trial 12 weeks after my metastatic diagnosis in 2017. A biopsy confirmed that TNBC (Triple Negative Breast Cancer) had returned (tumor sites were in my lungs, spine, ribs and pelvis). In addition, the biopsy also confirmed that it was the same exact TNBC that I had had in my primary stage (the cancer had not changed to hormone positive). I was Stage IV Metastatic TNBC.

Before my diagnosis was confirmed, I set upon doing some serious research. In order for me to satisfy my unwavering quest to make an informed decision, based specifically on my case and scientific info, I was going to have to do some serious homework. Completing an exhaustive search trying to piece together a cohesive action plan, I had enough information to make an informed decision. My info came from:

• 4 oncology cancer researchers (2 before my MTNBC diagnosis and 2 after)

• 8 to 12 hours a day pouring over medical journals, online chat rooms, magazine articles, research studies, white papers and online support groups

• 2 discussions from peers who had attempted or successfully entered clinical trials and how did they go about planning (one discussion happened online and one over lunch in person)

• Maximizing all the scientific tools I had to assist in making a decision. The tools included CT Scan, Biopsy, and Genomc Testing).

But after all this work, mapping out a plan, I still had to bring up the conversation of a clinical trial with my original breast oncologist. I can remember the frustration when I brought up the idea of participating in a clinical trial to my original oncologist, and her initial dismissal of the idea. I just wanted to discuss all my options, weigh one against the other and collaborate with my oncologist to make an informed choice. It was not until she realized during my biopsy confirmation visit that my original oncologist realize that I had been consulting with TNBC research oncologist who did not think my theory of participating in a clinical trial was so far fetched. Only then did my original oncologist jump on board to suggest that it was a possibility. By then the damage had been done, and our relationship never recovered. Subsequently I divorced my original oncology team.

So, why is the conversation of clinical trial participation so difficult to have? Really? Why is the conversation of clinical trials, not had at the beginning of treatment planning for many patients faced with the challenge of navigating a cancer diagnosis? Especially a late stage cancer diagnosis? A number of reasons pop into my mind:

• Doctor Bias - It’s a real thing. I know because I experienced it. My words went unheard, unvalued and my opinion was discounted.

• Uneducated Patients - a patient may not be aware of what a clinical trial is and that it is an option

• Clinical Trial Public Perception and Bias - the atrocities that happened during the Tuskegee study and other study incidence’s are still fresh in minds of a patients and caregivers. The historical resistance and distrust are common feelings that exist and should be recognized.

• No wide held discussion’s on safety measures put into place by medical institutions and government to ensure patient safety. I had no idea that an Institutional Review Board (IRB) even existed. The IRB is the main body of research supervision.

• Community Hospital Disadvantage - a majority of clinical trials take place at larger teaching institutions. Does this fact lead to doctors and patients in the community setting having less opportunities to discuss clinical trials?

So many questions. I understand that clinical trials are not always an option. patients have a right not to participate, and oncologist’s may have better options that include targeted treatments that don’t require entering a clinical trial. But I what if the discussion happened earlier and the options were weighed? Would that make for better communication between doctor and patient?

Food for Thought #1 - TNBC - Subgroups Is this the future for treatment options?

Should TNBC subsets be discussed with the doctor?

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During my research in my quest to build an accurate and informed action plan to stay alive I came across some very interesting charts that indicated TNBC had been broken down into subsets! I had never imagined such a thing, and as looked further, sure enough there are grids floating around that break down the very heterogeneous (different) nature within TNBC . I can remember very clearly discussing subsets with my second opinion (research oncologist, who I sought out just before I received confirmation of metastatic diagnosis) who said “You are the very first patient that I have, ask me about TNBC subsets”.

My question is, if TNBC is so hard to treat, then why aren’t the subsets discussed in the primary treatment care phase? There was no mention from any of the doctors that I encountered in my primary phase that TNBC had subsets that distinctly identify how one subset would respond to treatment vs another TNBC subset. How shocked was I that known of this information had ever been conveyed to me by my primary oncologist. Was I alone? Was this standard practice in the primary stage not to mention this HUGE fact? How many others have also been super uniformed like I was. Could it be that if I had had a primary oncologist who had specialized in TNBC, that I might have received this info in my early stage diagnosis? It makes me wonder who’s responsibility is it to get this information to the patient? The doctor, some online advocacy organization or is it the patients responsibility to know all of this?

TNBC subgroup taken from the Journal of Oncology Practice May 2018 copyright ASCO

From looking at the subgroup grid, one can get a basic understanding that TNBC is different an the “classification” is just an umbrella, and within the classifications are distinct types of TNBC that may respond to different treatments. I had no idea this was even an issue until I received my metastatic diagnosis and starting reading, and educating myself. So the bigger questions are:

• Are the subsets important? If so, then how important is it when one is first diagnosed?

• How do you find out which one of these subgroups you fall in in?

• Should it be mandatory to investigate and reveal to a patient which subset one falls in?

• Should the treatment plan of someone diagnosed with TNBC be based off of one of these subgroups from the start?

I have no idea what subgroup I fall under, but I believe the best fit would be: The Histologic examination of Tumor Infiltrating Lymphocytes (TIL’s). The reasoning behind my theory was that when my second opinion examined my cells, she indicated to me that I had a large amount of TIL’s. This information was vital to me because it gave me some scientific information to base my plan of attack. Having a large amount of TIL”s may be a biomarker of how one may due if treated with a drug to fight cancer.

So, the burning question still exists. When will the conversation about subsets, and the huge individual differences in TNBC diagnosis be discussed on a wider basis, so that patients can become more informed and help decide what plan of action they want to take regarding their treatment plan. Just asking.

The Rabbit Hole....Ending my hiatus & living with Stage IV TNBC

Where did I go? Why did I stop posting? How have I been?

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Wow, it’s been over two years since I last posted. Abandoning, suspending, walking away from what I loved to do. The decision was instant, a snap judgement. It was like repurposing power, using what I had in my reserves to focus less on the greater good and simple put, focusing every single ounce of strength, courage, experience, hope and prayer on one thing. Survival.

1. So what happened? Why did you stop posting?

   In April of 2017 I was diagnosed with Stage IV Triple Negative Breast Cancer. For those of you who don’t know Triple Negative Breast Cancer originates in the breast and is not express the genes for estrogen receptor (ER), progesterone receptor (PR) or HER2/neu. This in turn makes Triple Negative Breast Cancer/TNBC hard to treat.

2. What was it like for you when you where giving the Stage IV Metastatic TNBC diagnosis?

   It was crushing. To be told that your life expectancy was shortened. It was numbing. I remember being ice cold emotionally when the diagnosis was confirmed. No crying, no tears, nothing. I was ice cold. There was not room for a single inch of emotion, I had already decided before walking in to meet with my original oncologist that no matter what she told me, it was not going to break me. I won’t go into to all the details now (as I’’m working on a detailed book) but let’s just say I summoned up a full blockade response. Yeah, you know the one. For every time you've been knocked down, slighted, punched, kicked, disrespected, we gain just a little bit of resilience each time we get up. So my lifetime of experiences prepared me, and like a bull seeing red, I pushed thru the visit, trampling and suppressing any belief that I was not going to make it.

3. So what did you do next?

   I went home and laid down for a week. My body was very tired and I was trying to process everything I had heard. You see, It was not just the confirmation that I was now Stage IV MTNBC that I was dealing with. I was dealing with the loads of research and tons of new information that I was ingesting daily, a habit I had picked up when I was told something might be wrong in March of 2017. When my original oncologist revealed that some activity in my lungs and spine had shown up on a PET Scan, my immediate reaction was to start ingesting research. I spent at least 5-8 hours a day (often in the middle of the night) just reading and educating myself on Metastatic Triple Negative Breast Cancer, what it meant, who was doing research, what kind research they were doing and what were the results. I poured over white papers, spent hours in chat rooms that doctors frequent, read immense amounts of research articles, watched videos and wrote down notes, questions and scenarios.

4. What did I learn?

   That TNBC is not just one disease. Nope. That’s right, the most important thing that I learned from all that research in March of 2017 was that TNBC was heterogeneous, meaning that TNBC was not uniform and it did not fit into one tight, structured simple classification. In other words TNBC consists of subsets, that are grouped together and given the title of TNBC. Yup. It was shocking, because no one ever discussed with me the fact that I had been diagnosed with a disease that had subtypes. Back in 2015 when I was diagnosed Stage I TNBC, I was under the assumption that it was a rare, more aggressive form of breast cancer, but I did not know that even with that diagnosis, that there were differences that could effect how I would respond to standard of care chemotherapy. So, once I was diagnosed metastatic the big question became, which subset did I fall under and how were researcher’s addressing it.

5. What conclusion did you come to after doing all the research.

   Well, quite frankly I knew the only option was building a survival action plan based solely off of scientific facts that pertained specifically to my case, I was seeking Precison Oncology. Precision Oncology is an innovative approach to cancer treatment that ensures your treatment is specifically designed and targeted to your unique form of cancer. So after doing some reading, I just started approaching the oncologist that had done the research. As you guys remember I’ve talked to researchers prior to my Stage IV diagnosis, straight guerrilla style, just showing up without an appointment and making myself at home. Well with my Stage IV diagnosis my approach was a little more clinical. I approached the oncologist/researchers and asked questions about what they were working on (I actually made appointments!), why they were working on it, what was the end result and how if any could it be applied to my particular case. Eventually after chatting with one very smart clinical research oncologist I learned that: I had a ton of tumor lymphocytes (white blood cells that have left the bloodstream and migrated towards the tumor). In other words, these TIL’s had recognized the nasty ass cancer in my body, had mobilized together to fight but did not properly kill off the tumor cells. This research oncologist indicated that I should have done a lot better when I was being treated for Stage I TNBC on chemotherapy because of my abundance of TIL’s. The research oncologist indicated that I should get genomic testing (when your tumor is specifically tested for genetic mutations) and think about trying to get into a clinical trial that was targeting a particular mutation (if I had one).

6. What action did I take after to address my treatment plan after being diagnosed with Stage IV TNBC?

   I went back to my original oncologist to discuss my options. In the four weeks from PET Scan to biopsy to results I had become a different person. No longer was I satisfied with having my oncologist organize my treatment plan without having a say in what direction I would be going. I came with a specific needs request based off of conversations I had had with the research oncologist. I wanted my treatment plan to be factual and science based with no decisions based off emotion or what any other patients were doing. I needed these decisions to be about me, my case and very specific. Sadly, my original oncologist did not agree that I should have genomic testing, instead countering that I should exhaust all “standard of care”. Mmmm. When I pushed back and ask why, my original oncologist indicated that “other patients with MTNBC were doing well with parp inhibitors”. I pushed back again and asked how this decision was being made “based on what!” Again my original oncologist, pigeoned holed my ideas of genomic testing and my attempts to rationalize trying for admittance into a clinical trial. “It could take months” was my original oncologist response “And the cancer could keep growing, while you wait to get into a trial”. Frustrated but armed with information, I pushed back and indicated that I was only going to build an actionable treatment plan based off science, not generalizations, specific to my needs. At that point, after hearing and feeling my original oncologist resistance I knew it was time to end our relationship and part ways. It was one of the most brutal, sad and frustrating days of my life, but it was also very liberating. I knew that deep down inside I had changed for the better and instead of being an alarmist and conformist, I was walking a new path, based off of science. I went on to receive my results of genomic testing via Foundation Medicine, grabbed a copy of my biopsy report, ordered cd’s of my scans, arranged my huge medical report in a binder and hit the road. I was on a quest to get into a clinical trial.

7. Where did the information/Precision Oncology lead you?

   At the time there were not a ton of clinical trial navigators (that I knew of). I spent lots of time on the Clinical trails.gov site hunting for a trial. Luckily today patients have the ability to choose from an array of navigational tools that can assist in the search for a clinical trial some of which include: SHARE’s Metastatic Breast Cancer Trial Search, Cancer Research Institute’s Clinical Trial Finder, National Cancer Institute’s Clinical Trial Database. These represent just a few and there are a lot of other clinical trial navigators out there. Thank goodness, because the task can be daunting. Eventually I narrowed down my choices to include trials that were focusing on TNBC patients, were only treating metastatic cancer with immunotherapy (only no combo with chemo) and trials that had two or more immunotherapies combined for treatment (as I had been told by a third research oncologist that some patients had a better chance of response when immunotherapy is given in pairs and not as a single agent (mono therapy). Eventually I started to look at individual hospital web sites. Even then the hospital had to be a teaching or research institution, because I knew that the access to clinical trials was more extensive at one of these hospitals. Now you all know my personality is a bit of a wild card and I definitely used that to my advantage. After looking over my genomic report from I contacted a Principal Investigator (the research oncologist who runs the trial) to discuss a trial he was running using immunotherapy targeting a PIK3CA mutation. In all honesty I did not have that mutation, but I had one that was in the family, PIK3R1. I figured, it sounded close enough and why not explore the possibility of allowing me into the trial based on that! Well, several says after sending my email, the PI called me back. This was June of 2017. I can still here his deep voice as clear as a sunny day. Not only did he shoot down my theory down (sorry, but clinical trials are a lot more specific than being close enough), but he after my initial let down, he informed me of some life changing information. The PI indicated that a double agent immunotherapy only clinical trial that he was running, was opening up a cohort to include MTNBC patients. The trial had already been running and had been treating Non Small Lung cell and Melanoma cancer patients successfully with this double agent immunotherapy only trial. The PI wanted to know if I was willing give it a try and sign up for the trial, that had not even opened up yet to include MTNBC. It was like Christmas in June! Long story short twelve weeks after getting my diagnosis of Metastatic Triple Negative Breast Cancer I was entered into a double agent immunotherapy only clinical trial.

8. What kind of immunotherapy were/are you on? What’s it like being on the trial?

   On July 30th 2017, I entered the clinical trial. The trial consists of getting two immunotherapies one experimental and on that’s been on the marker for a while). I receive the agents every 21 days via infusion as an outpatient at the hospital. At the time I was receiving a revamped version of an IL2 agent NKTR - 214 and PD1 Inhibitor. I received both the drugs at the same time and was monitored for side effects (via blood tests, EKG’s). I acquired a new team that includes a Principal Investigator, Research Nurse, Infusion Nurse, Phlebotomist, Physician Assistant, Nutritionist, Massage Therapist, Social Worker, Receptionist and a Customer Service Rep (who tracks my expenditures and makes sure I’m reimbursed for out of pocket expenses while participating in the trial such as food and parking). I have grown very fond of my new team after divorcing my old one. I have even found a new breast oncologist and am slowly building a new treatment relationship. For the first 10 months of the trial I was receiving both agents at the same time. The side effects from the IL2 combo with PD1 were a little rough at the beginning of the trial. Some of which included puffy and peeling skin under my eyes and lips. Extreme fatigue and heartburn. Eventually I started to get really bad arthritic pain that would last 72 hours and then I’d have what I’d call my “Pop Up” and feel better. Most these side effects would last from 48 to 72 hours, After that I was able to move around, go out, spend time with family and enjoy life. My focus was all about survival.

9. So, what dd the immunotherapy work?

   Yes! In a nutshell eight weeks after starting the trial I received my first CT Scan. The scan revealed that my tumors had decreased by a whopping 72%. That’s right after being diagnosed with Stage IV Triple Negative Breast Cancer in April of 2017, entering a trial in July of 2017 it was revealed in September 2017 that the tumors in my left lung, ribs, spine and pelvis had decreased. By May of 2018 the tumors in my lung, spine and ribs had disappeared. I have one small “spot” of left on my pelvic bone. That spot has been stable for well over a year now. My oncologist has indicated it might be a hole that was left over after tumor reduction. That spot is the only thing that keeps me form being considered a complete responder (as I am officially known as a partial responder)! The feat is nothing short of amazing that I have had such a durable measurable response for the length of time I have had. Especially since I’ve only applied for and been on only one clinical trial. Due to my success/durable response the Principal Investigator and I felt I had received the maximum clinical benefit from the trial drugs, after determining that I had a 100% reduction in the target tumors and I came off the trial after 20.7 months. As of my last scan, things are still the same (quiet) and I have had no tumor progression (as of Sept 2019).

10. So what’s next.

    Attempting to reclaim my life. It’s been an emotional roller coaster that most can’t understand. I still scour, hunting for research and educating myself on my disease. I answer emails from other patients who have been diagnosed with the disease who have heard about my story and have questions. It’s really the reason why I chose to begin posting again. To pay it forward. In addition I have teamed up with non profit advocacy groups and write, speak and consult about my experience from. a patient perspective. In addition, I’m in the process of writing a book. Without information from other patients sharing their individual experiences one what to expect when attempting to get into a clinical trial or what it’s like being on one, the journey would have been much more difficult. It’s not easy but hearing the stories motivated me and I figured if they could be brave enough to do, so could I. I read stories of patients effected from all types of cancers who shared their experiences around clinical trials, the good and the bad and it fueled my search, an quest to live and not succumb to this deadly disease. I’m one of the lucky 4% of breast cancer patients worldwide who respond to immunotherapy (only no chemo, radiation or targeted therapy combo). The amount of work and luck it took to get to this point is astounding. To finally start sharing my crazy story with others is therapeutic and may possibly inspire someone else to take a leap of faith, when faced with gigantic obstacles. So for every underdog out their facing a cancer diagnosis, I’ve begun to share my story, in the hopes that I can educate and keep motivate someone to keep going, no matter what the cost. So, Im back to updating my blog on useful information that may shed a light on services that all make up this community of cancer.

The Young Advocate

The Heels Were Made for Walking.....

As New York Fashion Week got underway , I began to wonder if any of the major fashion houses  would include breast cancer survivors in any of their respective shows.  Although Breast Cancer Awareness month is a few short weeks away in October, (which will offer a plethora of opportunities for survivors to rip a runway),  I was really curious to see if I might catch a glimpse of a "sister in the struggle" doing her thing at the holy grail (except for Paris) of fashion excellence.  

Almost immediately my search took a hard right turn, and instead of nodding my head in acknowledgement of a survivor sashaying in the bright lights of a fashion show, I was sitting across from a poised, confident, funny and very brave fashionista who's clearly on a mission, founder & head life coach,  Beating Cancer in Heels, very own Marlena Ortiz.

Beautiful, compact and with an abundance of NYC attitude (Like Gin, Hennessy or Tequilla  served straight with no chaser) breast cancer survivor Marlena Ortiz is fiercely determined to bring the importance of cancer awareness, early detection and support to women under 40.  Oh, and I must add that Marlena and her peers plan on  looking damn good while doing it!  Beating Cancer in Heels  is a 501(c) (3) non profit organization that empowers young women who have been diagnosed with cancer.  Through virtual life coaching, workshops and social activities, Beating Cancer in Heels has been providing much needed support to a consortium of individuals diagnosed with cancer under the age of 40. 

As a woman who was diagnosed as a child and then again as an adult (under 50) I have pretty good understanding that although we have commonalities, there are some big differences and concerns between children, teenagers, young adults,  mature adults and the elderly when managing a cancer diagnosis. For example parent's and caretakers of a child who is undergoing chemotherapy, radiation or some form of cancer regime may be concerned about a host of developmental problems that could arise down the road.  For young and mature adults concerns may include fertility, inability to breast feed, loss of income and sexuality.  For the elderly, concerns about  a cancer diagnosis on top of managing another chronic disease, along with mobility issues and age bias when determining inclusion in clinical trails, could be just the tip of the iceberg. 

On the warm sunny in September, I'd set up camp at a small and cozy cafe at the recommendation of Marlena in north Brooklyn.  As I sat quietly consumed by my own thoughts, the realization set in that I'd done very little research and this chat with Marlena was going to be truly organic, going strictly off of the cuff.  My worries quickly dissipated as my gaze swung up, to observe a burst of smooth energy stroll quickly into the cafe.  Wearing a pearly white smile and exuding the epitome of cool, earthy, confidence I instantly knew that this would be more than just an interview.  It would be one survivor chatting with another about their hopes, motivations, experiences and what's on the horizon.

 My initial interests were pretty simple, how did Marlena end up in the position that inspired her spirit of advocacy which created an idea, and then a movement.  The answer was both simple and  traumatic.  In 2009, at just 25 years old, Marlena was diagnosed with breast cancer. Young, vibrant and in the prime of her life, she discovered after self examination, and a sixth sense that nudged her along to seek medical care, she was in a fight for her life.  Things moved pretty quickly and after being told she would have to go thru a regime that included chemotherapy and hormone suppressing drugs, Marlena sought out support for dealing with the transition.  Finding little that she could relate to (remember this was in the early days of social media), Marlena decided to take things into her own hands and with that motivation Beating Cancer In Heels was born.  

With a background rooted in fashion, and wanting  to bridge the gap between those diagnosed, those receiving treatment and survivors, Beating Cancer in Heels provides a safe and supportive platform for young women to address issues, become educated and feel empowered. Whether it's enjoying a relaxed fellowship with peers at a Girls Night Out, getting glam tips and bags full of swag during Beauty Tutorials or speaking with a Life Coach, Beating Cancer in Heels is dedicated to provide mindful support to young women.  A savvy and well spoken advocate, Marlena and Beating Cancer in Heels has been featured in The NY Daily News, Nine West's collaboration with Fashion Targets Breast Cancer and numerous radio & TV appearances including The Wendy Williams Show.

Marlena already has her sights set on 2017 and will be tackling the task of another fundraiser, with the goal to continue to provide creative,  fun, introspective, and educational opportunities for young women navigating the cancer experience. 

For more information on how you can support or participate in upcoming events, please check out www.beatingcancerinheels.org.  In addition make sure to check out their cool and inspiring Instagram and Facebook pages. 

Beating Cancer in Heels founder Marlena Ortiz 🙌🏽💥👠💅🏾💖 

Even in the beginning stages of advocacy & treatment, Marlena maintained her sense of  style  💖👠💅🏾⭐️ 

Making it happen one heel at a time! 👛👑💥👠 

Chillin in Brooklyn 👠💖📸 

The Tattoo Artist

A conversation with veteran tattoo artist Friday Jones.  

There are times in life when sacrifices have to be made in order to accomplish a goal. The task can sometimes be simple, easy, with the end results pleasing.  On the opposite side, choices can be complicated, gut wrenching, with little wriggle room, that have you second guessing whether the sacrifice was worth it. Women who are diagnosed with breast cancer often find themselves in the unenviable  position of removing their breasts in order to save their lives. I know, because I'm one of them. Everyday thousands of women have mastectomies, which some may consider the ultimate sacrifice of sexuality. I don't personally don't believe that, but some do, and it can be a uphill battle trying to recapture what was once second nature.  A women's sense of sexual identity, self confidence and body image are just a small look into the huge litany of self sacrifice made in the war against breast cancer. 

So, as you may know I had a double mastectomy with immediate reconstruction in August 2015 (I find it wonderfully ironic to posting this story so close to my anniversary). Currently I have tissue expanders and will complete the last stage of major reconstruction this year with a exchange from temporary expanders to breast implants. After that, I can decide to have nipples rebuilt or obtain a 3D tattoo that looks just like a nipple. 

So of course being the inquisitive woman that I am, I wanted to find out what the real deal was with options in regards to nipple tattoos and covering up scars that come with surgery. I even went so far as to attend the United Ink Tattoo Show at the Resorts World Casino in April 2016, in search of answers. Still, I was looking to have a one on one conversation with an artist who understood the emotional, physical and financial challenges a woman faces when fighting breast cancer, and be willing to share some knowledge.   

My quest led me to Friday Jones. (*sidebar I had to really rack my brain to remember how Friday came onto my radar, ugh this chemo brain, now I remember). Scrolling thru my Facebook feed one night I came across a video of a woman happily getting her dance on for Mothers Day. What caught my attention was the fact that the woman was topless, apparently very happy, breast jiggling to the beat, in celebration of her new tattoos. Mmm, I thought, who was responsible for such happiness and where can I find her?  Someone named Friday Jones?  Who's that?  

Finally, after a little prodding the legendary (yeah, that's right & I was clueless) Friday Jones so graciously agreed to sit down with me and shed light on exactly who she is, what she does and where she's going.   

Let me break down the highlights of our conversation: 

1. Friday comes from a military family, brother is a fighter pilot
2. One of Friday's first jobs was putting postage stamp art onto T Shirts
3. Has been tattooing for 25 years  
4. Has a resume so deep, but she is so regular & chill to talk to. Friday has put ink on some of entertainment's biggest stars including Angelina Jolie,  Penelope Cruz and Lorraine Branco (just to name a few & her list is long)
5. She is a board member of P.Ink/Personal Ink a charity matching women who've had mastectomies with tattoo artist (yup, she's and advocate too). Check them out at p-ink.org & look out for news on their upcoming P. Inkathon happening October 10, 2016
6. Star of Oxygen Network's Tattoos After Dark  
7. Is a bio coastal artist. When in NYC she can be found working out of Shafer Plastic Surgery located at 10 East 53rd Street just steps away from St. Patrick's Cathedral (and working out of a doctors office bodes well for women who've had mastectomies getting 3D nipple Tattoo) 
8. Is about to start honing her craft in New Orleans!  Yes, y'all better get ready💥 

What struck me most about Friday is how self aware she is and her knowledge (she gave me a brief history on the cultural background of tattoos in this country) and her willingness to acknowledge the importance the role a 3D nipple tattoo plays in restoring the self confidence of a woman who has lost her natural breast.  

Friday firmly believes that her mission to alleviate the hurt and emotional baggage that comes with breast surgery and bring out a new sense happiness, comes from her acute sense of humility. You see after many years spent as an apprentice at Inksmith & Rogers Studios in Jacksonville, FL, Friday learned a simple yet basic concept that would change her artistic approach. She learned that as a tattoo artist, it's not about what she wants to do to you,  but more importantly it's about what the client's needs are,  their vision, and bringing that picture to life.  With that knowledge & attitude adjustment, Friday made her way to NYC, eventually opening up her vey own tattoo salon on Fifth Ave.  During this time, Friday made a key connection with plastic surgeon  Dr. Oren Lerman, who began referring clients to Friday, to achieve a more natural looking result than what his team could provide in the area of 3D breast tattooing. Thus began Friday's transition from just doing illustrative body art. 

Friday (I just love that name, which was given to her while working on school breaks with artist Spider Webb, before 1997 in NYC when it was illegal to get a tattoo) gave me a rundown of what the process is, if your interested in getting a 3D Nipple tattoo, with Friday. 

• First you need a consult. Friday and a licensed plastic surgeon would take a look at your scars to determined if your skin is ready for the tattoo. Nothing happens until your skin is healed. 
• Determing readiness is on a case by case basis and can be anywere from six to eighteen months after final reconstructive surgery. 
•  The color of your inner lip determines what the pigment of the 3D Nipple tattoo.  
• It's a pretty shallow incision & needs aftercare to fight the bodies natural response to "push out" the ink.  
• Friday recommends washing gently with soap & cool water & patting dry.  
• Applying thin coats of natural emoiliant moisterizer like cocoa or shea butter. Friday recommends avoiding products that contain petroleum a industrial bi product that does not absorb to encourage the skin to heal. 
• No swimming or sitting in a hot tub (at least for a couple of days) after. 
• Some insurance will reimburse/cover the cost of getting a 3D nipple tattoo as long as the procedure is done in a doctors office!  So, no she will not come to your home & do this if your trying to get the insurance company to cover the cost! (Please check with your insurance carrier) Friday charges $500.00 for the 3D nipple tattoo. 

• Managing your expectations of what you want to look like. It's a healthy attitude to expect that the results may be spectacular or as close as good can get (again it's a case by case basis) 

Lastly, for a post operative consult (on the east coast) at Shafer Plastic Surgery in NYC check Friday's web site for bookings at:  fridayjones.net

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