By Carlin Hafiz
My breast cancer story has a little bit of a different twist than most. I was one who did not discover a lump on my breast. My discovery was via a lump under my armpit which made practicing Bikram Yoga very painful.
In December 2012 I decided to try Bikram Yoga as a new addition to my workout regimen. I started practicing 2 times a week and loved it! By the middle of December I ended up getting food poisoning and was sick for 14 days. During that time I noticed a lump under my arm and thought it was my lymph nodes fighting off the toxins from the food poison. By the beginning of January I had a hard time doing some of the poses I needed to do for my yoga class like putting my arm behind my back in a simple twist. I also noticed how it began to get harder for me to put my arm down while walking or relaxing. I asked my husband to look at it just to make sure I didn’t have a bruise or anything I couldn’t see. We both agreed that I needed to see my doctor.
I went to see my Doctor on January 16, 2013. She felt around the armpit and said she didn’t think it was anything major; however, she wanted it checked out. I was scheduled for a mammogram and ultrasound the next week. The mammogram showed that everything was normal and the ultrasound showed poorly differentiated cells which triggered more investigating. I was scheduled for a biopsy a couple of days later.
The biopsy revealed quite a bit. It showed there were tumor cells compatible with poorly differentiated breast carcinoma (ER-negative, PR-negative, HER2-negative) as well as upper gastrointestinal and salivary gland carcinoma. So did I have breast, stomach, or esophageal cancer?
I had to wait over the weekend to find out!! I started planning my strategy to fight whatever was heading my way! My doctor prescribed me an antibiotic because we just knew it was some type of an infection…no way could it be cancer!!! I had no history of breast cancer in my family so we believed it was traces from the food poisoning I got in December or something minor that was throwing my body off.
February 11, 2013, I received the “official call” from my doctor: “I have not-so-good news. Your results show abnormal findings in the swollen lymph node. It is cancer. Carlin, I am so sorry honey. Please come see me as soon as possible.”
As I was on my way to her office all I could think was why am I being punished? I don’t understand. I am healthy, spiritual, and I try to be a good person. I mean I do have shortcomings…but what the hell?! When I finally made it to the doctor’s office she did a breast exam and felt absolutely nothing.
I was scheduled to see the Oncologist the next day. After he did a second breast exam, and felt nothing, he explained that it was cancer in the lymph node (specifically Triple Negative breast cancer) and proceeded to talk about BRCA 1&2, unilateral or bilateral mastectomy, ovary removal, genetic testing, mutation carrier, etc. All I heard from the consultation was I AM GOING TO DIE! Did he say that? No. But losing my hair, breast, and life….I felt it was the end of the world. Fighting for my life at that time was not even a thought. I was alone as far as I was concerned. My stomach was in knots and of course I couldn’t eat or sleep. I cried and asked God, “Why me?” His reply, “Why not you?”
Five days after the second breast exam a 1cm tumor appeared at the bottom of my breast! I had a lumpectomy (6 lymph nodes removed 1 positive), 8 rounds of chemotherapy, and am currently undergoing radiation treatment.
I know that Bikram Yoga saved my life! I believe it was the toxins trying to come out of my body from yoga bumping heads with the cancer which made my armpit hurt, and forced me to go to the doctor.
I am so THANKFUL I followed my instinct
Have you ever considered participating in a walk, run or other athletic event to benefit a cause that has special meaning to you? I used to get emails, fliers, and see the ads on television and wonder what the atmosphere was like at these various events. I would look at the crowds of people, often wearing matching shirts or crazy outfits, displaying a range of emotions from joy and relief, to sadness and hope, wondering if it was all real. However, after participating in my first breast cancer walk, not only did all of the excitement make sense, it became a defining chapter in my personal and professional development.
Four years ago triple negative breast cancer (TNBC) took the life of my only sister. Two months later and still trying to figure out how to begin processing the loss, I signed up to do my first charity athletic event: a local breast cancer walk. It was there that I met an amazing Stanford oncologist who was handing out information about a clinical trial about this rare breast cancer subtype. Who knew that our conversation that day would lead to an introduction between three women who would ultimately create Triple Step Toward the Cure, the organization that I co-founded and work for today. An organization that has provided assistance to many other TNBC patients and their families and has ultimately helped me deal with my grief in one of the most constructive ways possible. Another one of those ways is by participating in our annual Stepping Towards the Cure 5K Run/Walk.
Everyone who participates in Stepping Towards the Cure has his or her own reason for doing so. For those who are survivors, perhaps they feel grateful for how far they have come. Others want to remember loved ones. Others may want to participate in the event as a way to support for efforts to find better treatment and stand in solidarity with those affected. We all realize that simply participating in the event, wearing a certain color or symbol will not cure triple negative breast cancer. However, we recognize that regardless of our individual reasons for walking, what unites us is the empowerment we feel from taking these small steps. Steps that we believe in some way inspire hope and are efforts we can individually and collectively make to galvanize progress toward ending this disease.
So why do I walk? I walk to honor and remember all of my amazing family, friends, patients, and colleagues taken by this disease, including Lori Jasperse Redmer, the former executive director of the TNBC Foundation who I had come to deeply admire, who lost her battle with TNBC last week.
I walk to keep the mission of our organization alive and honor its origins. At each event, I am reminded of why we are here and that despite all of the breast cancer awareness efforts, I am still meeting too many people who have never heard of this type of breast cancer. I walk knowing that the more people, health providers and communities become aware of this disease, the more resources will be generated for patients.
Lastly, I walk for the women I know and have never met who are still fighting, to remind them that they are not alone. So that they can see that there is a whole community of people supporting them by using our collective efforts and resources to support them through this journey and keep the focus on finding the best targeted TNBC treatments possible and lead us to a cure.
Why do you walk? Whatever your reason, we hope you will join us on either Sunday, September 15, 2013 or Saturday, October 5, 2013, because ultimately what’s important is that we take our steps together.
No one is ever prepared to hear that a woman close to him or her has breast cancer. For the person diagnosed, life can suddenly and dramatically change. As treatment progresses, the patient has a multitude of doctor visits and procedures in addition to life’s everyday challenges. Her partner’s challenges also are significant, but unfortunately they are often overlooked. Guest blogger, Dave Branch, shares his thoughts on supporting the love of his life through her battle with triple negative breast cancer.
* * *
Four years ago today, I received a card from Sheryl, the love of my life. It read:
Keep this card around forever,
hope it always helps you see
Even when we’re both so busy,
you mean everything to me.
Let it be a sweet reminder
that one thing’s forever true-
Though it sometimes goes unspoken,
I am so in love with you!
I still keep the miniature-sized version of that card in my wallet. Sheryl and I lived on opposite coasts, but just before Valentine’s Day we spent a wonderful weekend together in Aspen. I remember sitting down in the snow to rest after zipping down a run. She skied up to me, kicked off her skis, climbed on top of me, and not saying a word just kissed me. Without question it was, and still remains the happiest moment of my life.
Sheryl wasn’t perfect, but she was perfect for me. We both loved to salsa, travel, and go to the beach. She was my soul mate. She made me feel invincible. She made me want to be a better man. Sheryl was my Valentine in the truest sense of the word. And yes, everyday I saw her, talked to her, got an email, or a text from her, was Valentine’s Day.
Sheryl was a real soldier through the entire ordeal, maybe too much so. Sheryl never once complained, and often wanted more to talk about “how are YOU doing”. “What’s going on in YOUR life”. But between her disease, her chemo treatments to battle it, and her all-encompassing-always-on-never-get-a-moment’s-peace job, it always felt like there was never enough time or energy for me. I knew Sheryl was giving everything she could. But she was often tired, and even during our visits it seemed our time together was often interrupted. I was trying so hard to do and be everything she needed me to be, to make her happy, to not upset her, to help her, to BE THERE for her. And at the same time, be supportive of the decisions that she made, even when I didn’t agree with them.
One particular night at the hospital, I was at my wits end. I felt like I was at the end of my rope, that I couldn’t be or do anymore. I left the room and was walking down the hall. Sheryl’s mom, who I affectionately call Mother Carole, was coming towards me and we started talking. I lost it. I just didn’t think I could do anymore. And I felt so helpless. Mother Carole hugged me and listened for a while, you know, like mothers do. She then straightened me up, and said that “yes, you can do more”. She said we could all do more and we would have to. None of us were God. All we could do is all we could do. We all had to stretch our limits right then. And every time we thought we couldn’t do any more, we would find out that there was something more. We could all do much more than we ever thought we could. After all, Sheryl was.
I was recently asked what advice I could give to someone – a brother, lover, husband – that was going through this or had been through this. The best I can do is to pass on the advice I got from Mother Carole. If you’ve lost the fight, then know that you can and will get through it. It might seem impossible, but you will. It will be a marathon and not a sprint. It’s a mountain, not a molehill. I’m still climbing.
If you are still in the fight…trust and believe I wish I still was…then know that you are not Superman, or God. But you can do more than you ever thought you could. You will amaze yourself. Not for a badge of courage or medal of honor. But simply to give every morsel of love and support to the one you love. Listen and be present, do the things you do best, help with decisions, and laugh with her as much as you can. If Love has no bounds, then what you can do and be don’t either. If she means everything to you, remember EVERYTHING is a very big word.
Battling triple negative breast cancer requires the strength and determination of a warrior, however I am convinced it cannot be done alone. It takes an equally strong partner or group of warriors who will support their loved one through the highs and lows — never giving up and never letting go.
It started as a vow. A vow to use our experiences as three women whose lives were personally affected by triple negative breast cancer to educate others and support women who are battling this disease. We knew then that despite the circumstances that brought us together, something powerful and positive would result. That something was Triple Step Toward the Cure®, and today we are celebrating our third anniversary!
Three years later we continue to be amazed by all of the awesome things that have happened since our founding. Everything from Triple Step hosting the first ever TNBC 5K Walk (which raised over $40,000, and drew close to 400 participants) to meeting the ‘Godfather of Sole’, Manolo Blahnik, talking to him about TNBC and presenting him with one of our Awareness Pins.
But nothing compares to being able to help women in their transition from TNBC patients to survivors and the outpouring of community support we’ve received along the way. We are beyond grateful for the letters thanking us for the information we share, the volunteers who assist with our events, and the folks who generously donate proceeds to Triple Step from the events they organize like the lemonade stand set up by a family who lost a loved one to TNBC. These collective efforts make it possible for us to do what we do and inspire us during hard times like last year when we lost three amazing women to TNBC, including the first patient we ever supported.
We still have a long way to go in our goals to increase TNBC awareness and support efforts to bring about better treatments. But as the Chinese philosopher, Lao-Tzu, once said, “the journey of a thousand miles begins with a single step.” And at three years in, we are starting to hit our stride. Thanks for your support.
The Pink Shoe Girls
Today is Independence Day, the holiday where we all observe the adoption of the Declaration of Independence of the U.S. from Great Britain. For many of us, it means having the day off and gathering together with family and friends, for food and fireworks. At its core, however, the day should really serve as a reminder that we have much to celebrate: Freedom – including the right to make choices in order to determine what’s best for our lives. One of these choices is the right to get a second opinion when dealing with a major health issue such as a cancer diagnosis or whether to have surgery. Making the choice to have a second opinion is often a good idea because it allows you to play an active role in your health. The more you learn about your situation, the better informed you will be. And ultimately, the better the chances will be that you will receive the best and most appropriate type of treatment.
A second opinion is when a physician or specialist other than your primary doctor reviews your medical records and gives his or her view about your health issue and the best treatment plan for you to pursue. There are many different reasons to get a second opinion and the decision will often depend on your unique circumstances. For example, you may have seen your doctor about your condition and were told that it was nothing to be concerned about. You know your body better than anyone else and if you strongly believe something is wrong, then you should may want to get a second opinion. This sometimes occurs with breast cancer patients who are under 40 and many are delayed in receiving necessary treatment because of a misdiagnosis or a belief that they were too young to get cancer.
If you have been given a diagnosis that you do not fully understand, you should also consider getting a second opinion. Hearing another physician explain things may help you better understand your illness or condition. A second opinion can also be helpful if a non-specialist diagnosed you, especially if your condition is rare. Another reason could be is that you live in a remote area with a small hospital. While small hospitals can be wonderful treatment facilities, they may not see many patients with your particular health concern. They may also lack the capacity to serve patients requiring complicated procedures. If this is the case, then it is probably a good idea to consult with a doctor or team of specialists from a larger hospital before deciding on and beginning treatment. For more information on the importance of second opinions and when to get one, click here:
Fans of the Golden Girls may remember the episode where Dorothy contracts an illness that leaves her so exhausted she can barely speak at times. She becomes so ill, she has to quit her job and Rose, Blanche & Sophia convince her to see a specialist. She consults several doctors who tell her she’s fine, including a prominent NY specialist who basically tells her she is wasting his time and dismissively suggests that she “change her hair color”. Frustrated and scared, Dorothy persists and is ultimately seen by another specialist who finally gives her a name for her illness (Chronic Fatigue Syndrome) along with some much needed relief. Dorothy later sees the dismissive NY doctor during dinner with the girls at a restaurant and approaches him to deliver an empowering reprimand. Her heartfelt speech should resonate with any and everyone who has ever been sick and has questioned their right to be taken seriously and treated with respect as they sought answers to their health issues:
While getting a second opinion may seem awkward, do not worry that your doctor will be unhappy with you if you want to discuss things with another physician before proceeding. It’s perfectly normal to get a second opinion, especially with a cancer diagnosis and a knowledgeable and ethical doctor (fortunately, there are PLENTY of them out there!) will not be offended. He or she will understand that a second opinion is needed to provide reassurance that you are getting the best treatment. And more often than not, they will work with you to get the answers you need. If not, it may be time to declare an “Independence Day” of your own and find one who will. :)
Lastly, if the second opinion you receive confirms your existing treatment plan, think of the increased trust and confidence you and your loved ones will have gained in your doctor. If the second opinion differs, you now have a real opportunity to digest all you have learned and truly make an informed decision in choosing a provider that you feel comfortable with. Either way, the benefit of having an additional opinion goes without saying. Sometimes you may even decide that a third or fourth opinion is needed. But regardless of how many opinions you seek, you will find that the process empowers you become a better self-advocate and an active participant in your journey back to good health. Now isn’t that worth celebrating?
Happy Fourth of July !
The Pink Shoe Girls
It’s hard to believe but we are halfway through 2012! Wow. Seems like just last month we were just putting away Christmas decorations. Now folks are digging out summer clothes (Yay for summer sandals!!) and planning vacations and activities for the kids. Speaking of 2012, how has yours been thus far? Are you conversational in French yet? How about enjoying a regular workout routine? Finished organizing and color-coding your closets? If not, don’t feel bad. Trust me…you are in very good company. Most of us make New Year’s Resolutions with the best of intentions only to find out that around this time, they have become distant memories. However, aside from learning to not be so hard on ourselves, there are really only a few things that we should try to incorporate more of in our lives on a consistent basis. An attitude of gratitude is one of them.
As you can tell, the Pink Shoe Diaries took a little hiatus. We Pink Shoe Gals lead jam-packed lives (as no doubt, do all of you) and sometimes there are not enough hours in a day to do it all. So many good things have been happening behind the scenes: babies, speaking engagements, travel, attending special events, meeting and collaborating with other triple negative advocates and warriors, and lots more. (We will share more about some of those happenings a little later.) Yet, with all that’s going on, it’s easy to get overwhelmed and brood over what’s not getting done. But you know what brings me back? Thinking about how incredibly THANKFUL we are to be able to do what we do and for all of the people who have helped make our efforts possible through their unwavering support. Learning to stop and take stock of the blessings, even in the midst of chaos, has made a huge impact on the quality of my life.
I recently heard about John Kralik, a Los Angeles attorney, who got through a difficult time in his life by writing one thank you note each day for a year. John came to realize that he failed to notice the good things that happened to him and the good people he encountered on a daily basis. He ended up writing notes to everyone from the woman who cut his hair to the Starbuck’s barista who made an effort to remember his name. The experience made such a difference that he ended up writing a book. He noticed that the more appreciative he was of something, the more it came again. For instance, if he was thankful for his clients paying their bills, “they seemed to pay faster” and if he was thankful for the cases that came his way, “they seemed to come more.” (Read more about John Kralik’s story here: http://www.cbsnews.com/stories/2011/01/24/assignment_america/main7279295.shtml)
How cool is that? Imagine being the Starbuck’s barista and getting a handwritten thank you note just for simply remembering someone’s name? Pure. Awesomeness. Especially nowadays when one is lucky to get a card on their birthday. A text or an e-Greeting, maybe, but an actual card? Rare. Now while it may not be possible for you to send out 365 thank you cards, the inspirational message is clear and easy to incorporate: Be thankful and life will respond in kind. Or simply: Count your blessings.
Earlier this year, I was on my way to a salon appointment that took forever to get. I was leaving town and this was one of the last things I had to do before my flight. The salon is great but they are sticklers for on-time arrivals. As I got ready to leave my house, the power went out. No big deal you might think since I was leaving anyway. However, my garage door is electric so I couldn’t get my car out. I had initially given myself plenty of time to get to the appointment but as the minutes ticked by, that “extra cushion” began to dwindle. Panicking, I called the power company. The response was a recorded message saying that technicians were in the area working on the issue and power restoration was expected later that day! Seriously? I then called the salon. The stylist who answered was empathetic but could not promise anything as they were booked solid throughout the day. Beyond frustrated, I took a deep breath made a conscious decision to try to relax. What else could I do? I don’t live near any reliable public transportation and taking a cab across town was out of the question. So I went back in the house and after a minute or two of reflection, I took out a pad of paper and began to make a list of things I was grateful for:
- I still had battery power in my cell phone to make calls;
- My computer was fully charged so I could continue working on projects;
- How nice it was to sit quietly and enjoy the sounds and sights of early morning;
- Most of the food in my refrigerator was not in danger of spoiling;
- The appointment I had was important but not major like a medical or dental appointment;
- The power outage was not due to any major storm or other disaster where the power could potentially remain off for days instead of a few hours.
While I was making my Gratitude List, the power suddenly came back on. I glanced at my computer clock and realized it had only been off for about 20 minutes instead of several hours as the power company recording stated. I finally made it to my appointment on time and with several minutes to spare.
No matter what is going on and how crazy life gets, there is always something to actively be thankful for. Training your mind to consciously think in these terms allows you to focus on the present moment (instead of always thinking, “when xyz happens, I will be happy”), helps you get through challenging days, reduces stress levels (especially in situations completely out of your control) which leads to better health, boosts confidence, and positively impacts your relationships. You may also notice that you usually get what your heart desires and sometimes, much more. So write that thank you note to the cashier who gave you the nickel you were short and the teacher who didn’t give you the ‘side eye’ when you were 15 minutes late picking up your kids. Send a text to your significant other for cleaning up the kitchen after dinner last night or just for being the person they are. Keep a gratitude journal and commit to writing at least 3 things everyday that you are grateful for or say them as affirmations out loud to yourself in the mirror each morning. Whatever you come up with, be consistent. Trust me, it’s better than promising to join a gym each year. :)
“The more you praise and celebrate Your Life, The More There is In Life to Celebrate.” ~ Oprah Winfrey
Thank you for reading,
LF of The Pink Shoe Girls