MY LIFE

March 25 2020

Coping with MBC during the Covid-19 Pandemic

As I enter the second week of the corona virus/covid-19, the world around me is growing more isolated by the day. I am a 42 year old MBC patient in active treatment. When I started this life-saving treatment I knew all of the side-effects that came with chemotherapy. It seemed like the risks were worth it to remain alive. Most cancer patients have to learn to be ok with being at risk for all kinds things. Being immune compromised is the first thing we are told about and have to learn to manage all interactions with the outside world. Any germ or cold that is mild in the population can be severe or deadly to cancer patients.

So here I am in the midst of balancing my desire to be normal with the additional constraints COVID-19 has placed on my life and trying not to go crazy inside my house. The spring and summer are my peak times to be outside; I get so much joy in the sun and any activity that gets me out the house. Being inside my house 22 hours a day is getting old already. My normal has been to workout a minimum of three times a week. I love the gym; I can lose myself in pushing my body to its physical limits. I can’t control my diagnosis but I sure can control the weights or cardio equipment.

As more information was given about the transmission of COVID-19 and the at risk populations were identified, I had to heed common sense, medical professionals and the advice of friends. I decided to practice social distancing which majorly disrupted my gym routine. I started working out every other day as was my routine but as each day passed I was getting more anxious and restless. I tried to watch TV or read but I just couldn’t focus. Working out usually brings me so much joy that I thought “hmm… workout more”. Every other day workouts became daily workouts sometime twice a day workouts. Finally, I started to feel better.

Studies do show that being physically active helps to mitigate some of the side effects of treatment and I have found this to be true for me both during my early stage diagnosis and now as an MBC patient. Every person is different so please check with your physician before starting any workout plan. Another benefit of working out is that it also releases endorphins in the body. Endorphins are hormones that relieve stress and pain. I don’t know about you but I will take all the natural happiness I can get.

While it’s still early in the Covid-19 pandemic, making sure I incorporate some type of physical activity every day is the best coping mechanism for me. Be safe and WASH YOUR HANDS!!!

Written by Chawnte’ Randall, Tigerlily MBC Disparities ANGEL Advocate

March 25 2020

#StayHome with Shonte Drakeford, MBC ANGEL Advocate

During this time of uncertainty with the current COVID-19 outbreak, we want to remind you that we at Tigerlily Foundation care about you and your families physical, emotional, mental and spiritual health. Our goal is to offer you information, virtually, that will help you better understand breast cancer, to know rights as a patient and to learn how to get more involved in using you time and voices to make an impact.

As a breast cancer patient, you are among those who are at high risk of serious illness from COVID-19 because your immune system may have been weakened by cancer and its treatments such as immunotherapy and chemotherapy. Further, as a metastatic breast cancer patient whose cancer has spread to the lungs, you can experience significant complications with COVID-19, as this will be an additional stress for your already vulnerable lung.

Another way the COVID-19 pandemic may impact you is that some hospitals and healthcare facilities are delaying or cancelling procedures that are not urgent, emergencies or life-threatening. As such, your cancer screening, surgery or treatment may be rescheduled or delayed. If this is happening to you, know that you are not alone. Speak with your healthcare team about the best way to proceed with your care in this challenging situation.

We are proud of our ANGEL Advocates who are leading through example as we mobilize nationally and globally to #StayHome. MBC ANGEL Advocate Shonte Drakeford took the time to share how she is moving through this COVID.

Here is what she is up to:

Doing virtual workouts with my trainer, cleaning the house, playing with my dogs, tackling tasks I need to complete, chatting with all my friends on Marco Polo app. Gardening about to build my grow beds, spending time with my chickens, eating!!! Walking outside because it’s getting warmer now, playing video games, binging TV shows, listening to music!! Maybe this weekend I’ll clean my car. Oh so many things.
I am a Nurse Practitioner so I am working but since I’m high risk I’m doing telemedicine, I have treatment in two weeks so we shall see how that goes.
All besides freaking out, I’m informed and sane. Can’t worry about things I cannot control…just like the Cancer I have. Still enjoying my life, just another modification to which how’s it done.
-MBC ANGEL Advocate Shonte Drakeford

We encourage our breast cancer community to #StayHome and to only go out for essentials, or if available have a caregiver help with buying groceries, picking up medicine and other essential goods.

Currently, there are no specific precautions to prevent the spread of COVID-19 among people with cancer or their caregivers. However, to avoid being exposed to the coronavirus, it is recommended that everyone:

· Avoid close contact with people who are sick.

· Avoid touching your eyes, nose, and mouth.

· Stay home and practice social distancing.

· Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

· Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.

· Wash your hands often with soap and water for at least 20 seconds.

The Center for Disease Control (CDC) has the latest information on the coronavirus on their website.

December 5 2019

“Why did I become an Advocate?” – Sheila McGlown, Tigerlily MBC ANGEL Advocate

Often times I’m asked, “Why did I become an advocate?” And often times I ask myself the same question “WHY did I become an advocate?” Proverbs 31:8-9 says “Open your mouth for the mute, for the rights of all the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.

Initially, when I was diagnosed with metastatic breast cancer (MBC) in December of 2009, I had no clue about anything breast cancer. Even though my mom died of metastatic breast cancer in 2004, I guess I just blocked it out of my mind. Five years after my mom’s death I was diagnosed with MBC, and I was alone trying to navigate through an unknown world and I had no clue how I would make it. For nine months I knew of no support groups, any other women, or black women for that matter that was living with MBC. Those nine months got me thinking, as long as I’m alive NO woman/man should fight breast cancer alone.

I learned about racial disparities in the African American community from reading up on breast cancer and the effects it has on my community. I didn’t know racial disparities existed at first, because I had never experienced it. I’ve gotten the best quality of care and I have the most amazing medical team. But the fact is that black women are dying at a faster rate than any other race, and when I found that out, I decided then to use this as my platform. We have to work together to change this and the only way we can do this is by continuing to lift our voices not just in October but all year round.

Change is needed and we can’t enact change until we get to the root of the problem. We need more African American women to speak up when they feel they haven’t been treated as equal. Be your own advocate. If something is wrong don’t stop until someone listens. Often times African American women are dismissed by doctors and are not taken seriously about their symptoms. Make doctors listen. Make doctors hear you. We are not faking. African American women are worth fighting for too. We are worth the research and the clinical trials that go into having more efficient and effective medicines so that we can live longer. Twenty-five percent of African American patients are even offered Herceptin. Standards of care should be the same for every patient regardless of a person’s race. This was mind boggling to me because it’s like are we still living in the dark ages where everyone’s lives don’t matter.

Advocacy for me means lifting my voice and shouting from the mountain tops. Being an integral part of the Tigerlily Foundation, and the Fireside Chat being held at the San Antonio Breast Cancer Symposium in December 2019 is very important to me because we are raising our voices against racial disparities. There will be black women representing 22 cities in which there are the largest number of women of color being diagnosed with breast cancer. Talk about representation! A disparity is defined as a great difference. It’s time we continue to recognize racial disparities exist and as a community we need to work together to end this great difference. Tigerlily is doing just that – working together with organizations to bring awareness so that black women aren’t forgotten. I want breast cancer organizations to establish a dialog with MBC patients to find out the needs of an underserved community. I want African American women to know there are women who look like them out there advocating for them and lifting our voices. I want African American women to know they are not alone. We see the statistics and we hear your silent cries and we are working diligently to change those statistics. By participating in the Fireside Chat, I am able to lift my voice and I able to make them hear me. I want them to see my cries, to feel my soul and to feel my pain. We can continue to talk about it, but are we really taking a stance against racial disparities. Do we have both feet on the ground ready to run the race and see it through? My legacy is to change the thoughts and minds of the breast cancer community. I often said “Let me have a seat at the table”. After years of having seats at tables where people are listening but aren’t hearing me, I decided I’ll build my own table and I’ll invite you to my table, and I do have extra folding chairs.

Written By: Sheila McGlown, Tigerlily Foundation MBC ANGEL Advocate

Sheila McGlown is one of 11 MBC Angel Advocate attending Tigerlily Foundation’s Young Women’s Metastatic Breast Cancer Disparities Fireside Chat at the 2019 San Antonio Breast Cancer Symposium (SABCS) on the morning of December 10. The event is designed to foster transformational dialogue engaging young women in the African-American community from 22 cities identified as locations having a high rate of breast cancer diagnosis among women of color.

September 15 2019

It all started with a lump…

At the age of 31, I was diagnosed with stage 1b intraductal carcinoma. It was life shattering. I underwent six months of chemotherapy, a bilateral mastectomy with reconstruction, and healthy dose of PTSD. For the five years following, I diligently went to check ups, followed my doctor’s advice to the letter, only to be told at my five year checkup that the breast cancer had returned, this time in my bones. I was now stage IV and terminal.

At the time of metastatic cancer diagnosis, I had never heard of it. Even as a cancer survivor, it had never been explained to me that it could return in different areas of my body. My oncologist at the time foolishly used the word “cured” on more than one occasion. You can imagine how devastating this diagnosis is to someone who felt relatively confident in her education on breast cancer.

It has been five years since that horrible day. At 41, I can honestly say I am fully living my life with metastatic breast cancer. It has now metastasized to my lungs in addition to most of the bones in my body. It is painful and exhausting, yet I am here. I celebrate that daily. I am a single mother to my 8 year old son and thankfully, I am still able to work full time. This is not the life I thought I would be living, but it is my life now and I’ve made peace with that. In between being a mother and working, I dedicate a lot of time to writing about my cancer experience for my blog, The C Life, and various publications I’ve been lucky enough to be included in. I’ve recently become an advocate for AdvancedBreastCancer.net, hoping that others finding themselves in my shoes won’t feel as alone as I felt, especially in the beginning.

My greatest lesson in all of this is that there is still a very real, fulfilling, life to be lived with this diagnosis. I’ve always been a realist, but I do have hope for a long life. By adding my voice to some of the very powerful ones speaking out, we are already seeing some change in the way MBC is treated and discussed. We have more to do…and I’m here for it.

Written by: April Doyle, MBC ANGEL Advocate

August 30 2019

Why I started my Grassroot Non-profit Organization Angel in Disguise inc. after my Metastatic Diagnosis

In 2011, I became a metastatic breast cancer patient after an initial diagnosis in 2003. I had no clue what it meant to be “metastatic” and everything that was attached to this word. My doctor told me I would begin monthly shots, and in my mind that was it. I continued my daily schedule of working long hours and what I thought was a normal life. One day, I decided to attend a support group. No one in the support group looked like me in skin color, and they were quite older and seasoned. I immediately thought this group wasn’t for me. But I heard one lady say “honey why are you still working?” I thought to myself – Is that possible, not to work, as a single parent with a mortgage, bills, and other responsibilities. I was clueless of what that looked like, but I was eager to find out.

Now let’s fast forward to 2014. I had figured out how to no longer work at my 9-5 job, but I wasn’t sure how to spend my days. I mostly helped family and friends get things done while they worked, but it wasn’t enough. When one of my friends suggested I start an errands business, I envisioned what that would look like, set rates, and created Angel in Disguise Events – a concierge service, which included transportation services. Once I created this new “job” for myself I started handing out business cards, and included transportation services.

One day, I received a phone call to drive a breast cancer patient to 3 appointments, as her children were working. The lady advised she did not have the means to pay me. I told her it was ok, and I would be there to serve her. On this day, we spent 5 hours together – I drove 90 miles and went to 3 appointments with her. Before she got in my car she didn’t know me and I didn’t know her. By the time I dropped her off and returned home, the light bulb came on – I thought “If she doesn’t have money to pay me, there must be other patients like her.” I told the universe I would start a nonprofit organization to provide complimentary transportation to cancer patients, and in September 2015, Angel in Disguise Inc. became an official 501(c)3 in Charlotte, NC. We refer to our patients as our #VIDAS, and we bridge several gaps that they face. Transportation is one of the biggest needs among breast cancer patients – transportation to all cancer-related doctor appointments, treatment, surgery, medicine pickup, and light errands. This need is especially critical when you do not have a ride or when you are unable to drive yourself. I personally drive our VIDAS, and wait with the patient. This way, the patient has companionship, and given that we are both breast cancer survivors, there is a common understanding. Additional gaps that we bridge for breast cancer patients are aftercare meals, care bags and peer support.

Today, Angel in Disguise Inc. is a grassroots nonprofit. It is bigger than I had imagined and I will continue to help fellow breast cancer survivors have a positive and supportive experience though their breast cancer journey.

Written by: Angela ‘Jersi’ Baker, Tigerlily MBC ANGEL Advocate

July 23 2019

Living with Metastatic Breast Cancer

My name is Angela aka Jersi Baker. I am 48-years-young. I am battling this disease for the third time and am now living with Stage IV/metastatic breast cancer. In 2003, at the age of 32, I was diagnosed with DCIS breast cancer, which is the non-invasive form of breast cancer. My cancer was identified by my primary care physician who I was seeing that day to get birth control. After a mammogram and biopsy, it was confirmed that I had breast cancer. As a result, I had a mastectomy, reconstruction and took Tamoxifen for 5 years. I then went back to my “normal life” as a single mom, working and looking for a career change after having completed my master’s degree.

In 2010, I noticed a small bump on my skin, on my left breast. It didn’t hurt so I ignored it. A few months later during a routine checkup I mentioned it to my surgeon. My surgeon immediately started taking pictures and said that she would like to remove it. Once it was removed the pathology report later deemed it was in fact cancerous. Following the procedure, I had several rounds of radiation, and again I returned to what I thought was my normal life.

In 2012, my “normal life” took on an entire new meaning. I had a bad cold, and a weird noise, I could hear faintly coming from my chest, (although I thought everyone could hear it) so I went to urgent care. The technicians took x-rays and sent me home with a prescription. The next day when I returned home from work, there was a message on my answering machine from the hospital, asking me to give them a call. I failed to return the call because I was feeling better. The following day there was a follow up message stating “Ms. Baker, please give us a call we want to discuss your x-ray.” That got my attention, and I returned the call. I was told that they see some concerns on my x-ray and would like me to follow up with my oncologist. I made an appointment with my oncologist, I went alone, and he told me what he thought, but arranged for further test to confirm his suspicions. His suspicions were confirmed to be stage 4 metastatic breast cancer. On the day that he delivered the news that I have metastatic breast cancer, which was in my chest walls, spine, my mom was there to support me. I had no idea what any of this meant but asked I “what now,” and he said he would like to start me immediately on monthly shots of Faslodex and Xgeva.

I honestly didn’t know what to think or feel. I just knew I wanted to “fix it” and get back to life. My son was then away at college and telling him was my only concern. I also was set up to again go through about 24 rounds of radiation. I was truly on this journey alone up until this point, because I didn’t know all the questions to ask, any resources available to me, or anyone who looked like me and had the same walk. In 2016, because of nerve damage, uncomfortable feelings, internal itching and more, I decided to explant. I proudly call myself the #unoboobgirl. Last year, after being NED (no evidence of disease) for 7 years, my scans showed a reoccurrence and I have now added Ibrance, an oral pill taken for 21 days and 7 days off. After hearing about my reoccurrence, I worried briefly, and then remembered the Bible verse I live by Hebrews11:1- “Faith- The hope for things which are not seen but true.” My faith in God is strong, and I know without a doubt He’s GOT me! Although I am often tired, and have daily aches and pains, my mission and grassroots non-profit keep me busy and remind me of the people I need to help, inspire and support.

Written By: Angela Jersi Baker, MBC Tigerlily ANGEL Advocate

April 27 2019

How to be a Good Friend to Someone with Terminal Cancer

Her husband Patrick has big plans for the Northwest Arkansas METSquerade. Plans to double year one donations in year two, three, and stand up METSquerades all across the country. There’s a disenchanted look in Lisa’s eyes and her lips spread into a half frown. I know what she’s thinking; that she won’t be alive to watch this baby grow. But that’s not the worst of it…

Cooper and Karis are Lisa and Patrick’s world. Two of the most expressive and imaginative children I have ever met. Cooper tells people with great conviction that his mom has been imprisioned for stealing, buys his sneakers at the liquor store [where she buys EVERYTHING], and that he makes his own shirts out of sheep’s wool from their farm. All complete fabrications. 100% bombastic. Authentic Cooper.

Karis’ best friend is her momma Lisa. She’s barely four, but there’s an ancient understanding in her clear aqua eyes. Her hair is wavy, wild, and BIG, Dallas big and will not be tamed. She’s a real life version of the cabbage patch doll and lots more lovable. She takes me by the hand to show me her favorite room which is really not a room- it’s storage under the stairs. There’s an avalanche of pink toys there but she knows exactly where everything is. She’s the kind of little sister who just wants to tag along with big brother. Who tries to play as rough but gets twice as irked. She’s daddy’s princess who secretly wants to be a tomboy and the light in momma’s eyes. You can’t help but to adore her. That’s Karebear.

Lisa was diagnosed with de novo MBC to bone last summer at the age of 36. She had been healthy and still technically is in spite of the rogue cells that sleep inside of her. She has responded exceptionally well to her first line therapy of Letrozole and Ibrance and the only active cancer in her breast will be removed next month. Our prayer and sincere hope is that she’ll be an exceptional responder to this therapy which means she could go on for 3, 6, even 10 years without progression! But hope and prayer alone is not a strategy. This is why we’re working so hard for the METSquerade benefiting Metavivor; her greatest ally to transform a terminal illness’s into a chronic condition with a good quality of life.

Many of our family gatherings center around event planning and fundraising which frankly is a pleasant distraction, but there are frequent reminders of cancer’s vice grip on her life. When cooper picks up a monster truck I see the thoughts broadcast on Lisa’s face. ” Will I be alive to watch him take his drivers test?” As Karis demands to be picked up and spun around by daddy, she wonders if she’ll be alive to dance at her wedding. Those thoughts may be dark, but for an MBC patient who has just a 10% chance of living 10 years, they are an acrid reality.

I tell Lisa that it’s ok to have those thoughts but not to dwell on them. Today she’s stable. Today she’s active. Today she’s alive. So we live for today and we plan optimistically for tomorrow. She does the same for me. I too am living with terminal breast cancer.So what do you do, say, and how are you to BE when your best friend (and you) have incurable cancer? You laugh heartier. You sing louder. You love more authentically. You LIVE more sincerely. No one is guaranteed tomorrow but ours our promised lesser so. For those who have lost friends, daughters, mothers, lovers, mourn them and honor them by investing in the cause.

To Lisa,

May our families grow old together. May we rock our grand babies on the front porch while we wear Depends because, let’s face it, when we laugh hard, we pee a little. May we defy every statistic. May cancer be but a footnote in this crazy life we are blessed to share. I love you.

March 23 2017

Rebecca’s Ode to Beth Calabotta

I don’t know what to do so I’m doing this, I’m writing. I am consumed by that horrible, helpless feeling that comes when someone you love is suffering and there is nothing you can do to stop it. I can stand here from across the country and connect with other people in her life and let her know that we are praying for her, thinking of her, crying for her, loving her, and staying present for her as much as we possibly can at this difficult time. I want to honor my friend Beth and let her know how loved she is by so many people. I want her to know what an impact she has had on this horrible disease. She has educated so many about the realities of metastatic breast cancer. She has bravely shared her story, time, DNA, brilliant mind and so much more to help prevent others from suffering as she has. I want her to know what an impact she has had on me. Her fierce, unwavering determination and dedication to do as much as we can as fast as we can to eradicate MBC energizes me every step of the way in fighting for this cause. So many of her brilliant ideas have helped shaped how I think about the disease and how we need to research and fund it. Beth thinks big but then she takes the time to attend to details and to people. She has no ego, no stake in any of it. Beth has known for some time that she would not benefit from the research and advocacy she has done so much to advance. Yet, even in her darkest hours, her most painful moments, she is still churning out ideas, emails, phone calls to help prevent others from experiencing this suffering. She is one of those rare individuals who is not only beloved by the entire MBC community and beyond, but she is truly revered. She is universally respected and admired as well as loved – and that is no small thing.I went swimming the other day at an indoor pool. I mean really swimming – like actual laps – not just wading my cankles in to cool off kind of swimming. I thought of Beth the whole time. I hadn’t swam laps in years, but my doctors keep recommending it because of the severe joint pain I have caused by the cancer meds. As I eased into the rhythmic breathing and movements of my limbs gliding through the soft water – it occurred to me how much this sport – that she loved so much – suited Beth. Swimming is a tough sport. You have to be strong. You have to work at it to build stamina. You have to be dedicated. You have to know how to stay afloat and move at the same time. You have to multi-task – breathe, move, rotate, kick, pull, flip, push and glide. It is silent and often solitary – although Beth formed an incredible camaraderie with her swimming pals with whom she has strong and unbreakable bonds. You have to think, or deliberately not think as there are few distractions. You have to be self-reliant, driven, disciplined and self-motivated. It is for people with strong minds, bodies and hearts. Someone like Beth.

I don’t know what to do, but I know that I want to let Beth know all of these things that I think about her. I want her husband Dave, and her parents and her family to know all of this and more, what so many others think about our beloved Beth Calabotta.
I asked a small group of people in the MBC community who know and love Beth as I do, to each give me a word to describe her. This is what I got back.Beth Calabotta believed in me and in The Cancer Couch from its infancy. She encouraged me, helped me, rallied around this foundation, and played a huge role in getting us where we are today and where we are going. Beth generously donated the funds from her annual Beth Calabotta Swim Challenge to The Cancer Couch. Planning is already underway for this year’s swim, not only in Illinois, but also here in CT – my sister and her amazing crew in Cheshire are hosting a Beth Calabotta Swim Challenge in her honor.
If you would like more information on hosting a swim challenge of your own for The Cancer Couch in Beth’s honor, or participating in one, contact carrie@wellnessdatasolutions.com or vmciampi@gmail.com. A portion of the proceeds from all the swim challenges will go back to the fund set up in Beth’s name at Blessing Hospital in Quincy, Illinois as an angel fund to help MBC patients in financial need. A brick is also being placed in the garden there in Beth’s honor.

Beth, you make me want to swim.

You make me want to never stop fighting for MBC funding and advocacy.

You make me want to be a better person.

Thank you for giving all of us a shining example of the very best a human being can be.

I love YOU to the moon and back my friend.

February 23 2017

How a Disney Princess Helped Me Discover My New Normal

I was diagnosed with metastatic breast cancer in the Fall of 2013. The news was shocking and sobering, especially considering I knew very few people who thrived with it. Scared beyond comprehension, filled with sleepless nights and worries dancing through my head, I thought I knew what that diagnosis meant. At the same time, publicity ramped up for Disney’s “Frozen,” but I didn’t pay attention. The movie opened Thanksgiving weekend and after the holidays, the world knew it was not only a box office hit, but the key to a young girl’s heart. I didn’t realize, it would be to mine, as well.As the world was singing “Do you Want to Build a Snowman, ” I was anxiously awaiting my first set of scans after being diagnosed. My mind was filled with wildly ranging thoughts:Was this the calm before the storm? Would the results show tremendous growth and I would only have a few months or years left?If so, would my child really know me? Should we tell him or not?Will my new treatments debilitate me? Will I feel like myself? Will I be myself?With great luck, blessings and positive vibes, I received some good news mid-January. The cancer was stable. All things considering, it was the best news we could receive. I was thankful that my low-volume, oligometastatsis, stage IV metastatic disease didn’t rage its ugly head. However, the truth about stage IV disease is that the cancer has traveled through my blood and could be lurking in other places. My doctors can’t be sure it will not grow again. Science doesn’t really know. And in many cases, cancer will resist drugs after working well for a time period. So while I was relieved that the cancer hadn’t spread and happy to stay on my current treatment because the side effects were minimal, I felt empty.What does this mean? Just because my cancer isn’t growing now, what if it returns? Do I jump into my old life now that we better understand how to handle my cancer today? But how can I do that knowing I need to take care of myself differently? Life no longer has to be put on hold assessing my state of health, so it was about to get back to normal. Yet, what was normal?Normal was me prioritizing work or graduate school near the top of my list.Normal was me trying to jam pack my days with family, friends, acquaintances, school, work and the list making goes on…Normal was seldom exercising, eating a ton of packaged goods and drinking caffeine to keep me awake through the day.Normal was me trying to be perfect in all of my big roles: superstar employee, top of the list graduate student, incredibly supportive wife and a hands-on mother.After all the reading and inquiring about plant-based eating and optimal wellness those first few months after the stage IV diagnosis, I knew I couldn’t get back to that stressful lifestyle. I often thought: how do I figure out the new normal? Will the dark cloud of cancer always loom over my life? The first few weeks after the good news, I was living off the high, but still wondering what was next for me. One Saturday afternoon, I took my then five-year-old to see “Frozen.” While the movie theater was packed with a choir of families decked in Frozen-mania swag, it hit me. Elsa, who hid her true identity, finally ran free dancing up the mountains in blizzard conditions, allowing the force of nature to take over resulting in a crystallized winter wonderland. I realized I, too, had to “Let it Go.”My body was shaking, holding back tears. The easiest way for me to deal with my new normal was to let go of my old expectations and embrace what was in front of me right now. Take the life I have with cancer and make it the life I want it to be.

So now I’ve used Idina Menzel’s rendition as my theme song. Rather than jump back into my old stressful habits, I’m exploring the potential of opportunities in front of me and handling them with different tools. I now prioritize exercise and down-time. I’m writing more and enjoying speaking engagements on subjects I love: health and wellness. I’m involved in my son’s classroom and school. And I still love and honor my husband as my true Prince Charming. Do I worry of the cancer returning? Of course, but I try to give myself some time to accept each appointment milestone or setback, then move forward. I never wanted to be defined as a Caryn with cancer, but maybe all of us survivors can be seen as royalty in a kingdom of wellness, compassion and love. Because that is what my new normal is focused on.How have you dealt with hardship and embraced change?

December 16 2016

Renee in Cancerland

How did I end up here I often wonder?

Let me start from the start and make this as quick and easy as possible. I am going to use what me and my other Lifer friends call “cancer talk.”

Age 30: Stage 1, Triple Negative breast cancer.

I did what I was told: chemo (A/C x 4 and Taxol x 4); lumpectomy; 36 radiation treatments.

After surgery, I was informed that I had had a complete pathological response to the chemo treatment. Pretty much that I had NO cancer left for them to remover during surgery.

GREAT I thought. I did kick cancer’s a*s.

Almost 16 months later, I was approved for my yearly CT scan to make sure all was still well. I honestly thought nothing of this appointment because I thought me having a complete pathological response meant I was good to go.

I thought wrong.

Really wrong.

I was told the breast cancer had spread to my bones and lungs. I honestly had NO idea this was possible. I mean, I thought breast cancer meant in my breast. I was quickly educated on how little I actually knew about Breast Cancer.

I started with abraxane which didn’t work. My tumor grew while on it, which was VERY traumatic to me. I thought it was going to be like when I did chemo for Stage 1…one chemo and done.

I moved on to carboplatin and gemzar plus a trial of BSI-201. After 6 weeks, we scanned and it showed I was NED. No one wanted to believe it, so I kept on this combo for 6 months until my body could not rebound. The decision was made for me to stay on just the trial BSI-201.

All was great for 8 months until I was walking down some stairs when my right side went numb. I called my oncologist, and she said to go straight to the ER. After an MRI, I was told I had a mass in my brain about the size of a tennis ball.

After brain surgery, I thought I was all clean again. That didn’t last long. In November my leg went numb again, so back to the MRI machine. Another mass was there…in the exact same place. Surgery again. 6 months went by with me recovering again, and the same symptoms appeared and I just knew that the cancer was back. It was. 3rd brain surgery in 9 months. Recovered once again and all was well for some time.

This May I had to get a bone biopsy because all my counts had been continually falling. The biopsy showed that I have MDS (pre-leukemia). From then to September I was able to get chemo while the search for a bone marrow donor was on.

As of now, two 100% matches have been found for my bone marrow transplant! I should have an answer from one on Monday! I can’t even start to explain the excitement, fear and so much more that is going on in me.

So for now, that is my story. I pray to add that after the bone marrow transplant, I stay clear of any kind of cancer!

-Renee Sendelbach