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

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


Wow, it’s been almost two years since I 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 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 activity left on my pelvic bone. That spot has been stable for over a year now. My oncologist is not sure if it is a hole or actual cancer tumor. That tumor or spot is the only thing that keeps me form being considered a complete 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 has taken me off the IL2 and had just continued to keep me on the PD1 infusion every 21 days. Life is totally different just being on the one agent and I feel so much better and have just some slight fatigue. In addition I still am monitored via blood test three times a month and a CT scan every 8 weeks.

  10. So what’s next.

    Attempting to reclaim my life. I’m closing in on the second and final year of the clinical trial. 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. 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 🙌🏽💥👠💅🏾💖 

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

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

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

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

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

Chillin in Brooklyn 👠💖📸 

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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