Wow! October has been a busy month! Pink, pink, pink everywhere. A little secret about myself: I hate the color pink. I don't associate with the color pink. To me, pink is cute for cute, little girls. I am not a girl, and I am not cute. However, if it gets people to grope themselves (or better yet, get a doctor to do an exam), take more seriously one of those suspicious lumps that "appeared out of nowhere" and bring so much damn awareness that we find a cure, then let there be pink!
I will look like a walking bottle of Pepto-Bismol, but it is time for a cure. Far, f ar too many women, grandmothers, young mothers, even young teenagers now are getting diagnosed with breast cancer. This is unacceptable. There needs to be a cure. And, I am telling you right now, if I find out any non-profit is lining their pockets instead of putting most, if not all, of their funds into research, I will cut them off and publicly announce it.
Life is about perspective. Each situation can have many views and, depending on our mindset, thoughts that we choose to give energy to. What we allow to grow in our thoughts will form who are. Sometimes I can get as mad as can be for having to go through this twice. It's just not fair! I have dedicated my life to being a mother and have put all of my resources into my children. Yet breast cancer keeps getting in the way of that. It could be in the form of my precious time with them, the time I spend in fear or when the mounting medical bills keep rolling in and take income that we work hard for away from my children. Tru st me, I could spend thousands of dollars on myself for designer clothing, but I choose to spend it on giving my children the opportunities that I did not have, but breast cancer robs them.
However, this is not what I choose to focus on. I was invited to be a keynote speaker for a community lecture on "Women at Risk for Breast Cancer: The Role of Genetics" this past week. It was presented by an amazing group of physicians and administrators at Summit Medical Group. The audience was a mix of doctors and nurses, past and present breast cancer survivors. As I was speaking, I could see my fellow breast cancer warriors shaking their heads in affirmation of what I was saying. They understood me, I understood them. I was positively affecting them, and the feelings were mutual. I knew in that moment, I was exactly walking the path that God was leading me to walk. I felt so confident, secure and protected. All of my heartache and fear was alleviated in one high vibrational moment. Than k you, God.
I was also really happy to work St. Michael's "In the Pink" program this past week in Newark, New Jersey. St. Michael's was giving breast exams and, if needed, free mammograms! This amazing program targeted the under insured women who would otherwise not have the ability to get this done. These particular populations have become huge on my radar to help. These ladies are typically low-income, with no or little insurance to cover their health costs who, in turn, ignore their health because they are extremely busy and have no ability to take time for their health.
I have heard so many times that many of these women ignore a lump for years before seeking medical care because they "just did not have the time or money to address it." As a result, it is usually at an advanced stage that forces them into the hospital. This is just heartbreaking to hear and reminds me never to take my position for granted. It also lets me know that there is much work that needs to be done with these ladies. If I have to pound the streets of these cities to educate and promote self-exams, then I will. ALL lives matter, and I will do what I can to help.
RELATED VIDEO: Sandra Lee Opens Up About Her Breast Cancer Diagnosis I remember feeling so happy with the thought that I did not need to get radiation the first time around with breast cancer. It just was not the protocol after mastectomy for stage 1, and I was so happy about that. Radiation on top of chemotherapy just seemed like so much, like it would have put me right over the edge. Unfortunately, I was not so lucky this time.Or was I?
Something that seemed so scary actually ended up being the easiest, most uneventful aspect of my entire journey so far. Even when I get my Herceptin and Perjeta infusions every three weeks, I get poked in the arm to run an IV. God really gives us what we can handle. I was able to handle this.
My oncologist, Dr. Nissenblatt, recommended that I go to Dr. Khan from Robert Wood Medical Center. So my husband journeyed up to his office on one of my many days of booking four plus appointments in one day. I was so nervous, but I cracked some funny jokes with Jim to lighten the mood while waiting to meet him. D r. Khan walked in with two young resident doctors, and none of them were too bad to look at, oy vey. Dr. Khan was not exactly what I expected from such a well-respected radiation oncologist. He is a very young, slender, tall, handsome doctor who is clearly highly intelligent. This made me uneasy because they are literally checking out my boobs. I just tried to repeat to myself that they are doctors, that they see me as a patient and that they see many patients in a day. But again: Oy vey!
The mood in these appointments is always so intense. Fear, anxiety, gloom just fills the room, so, of course, I had to crack a couple of jokes about my boobs to ease the tension because I am so sensitive to it that I literally have to just start laughing sometimes or my head will just pop off.
Right out of the gate, Dr. Khan proceeded to tell me that, although, my case is uncommon, that everyone associated with my case is really positive about my prognosis. That is an unfortunate and un expected bump in the road, but one that I can easily overcome. This set a wonderful tone for the meeting. I loved his bedside manner and was instantly at peace. Dr. Khan spared my boobs being on display in front of a room full of doctors, instead taking the time to explain everything that I needed to know about radiation. "Radiation beams can get to places where chemotherapy may not due to poor circulation and, as result, limited penetrance," he tole me. This piece of the puzzle was very important in my case, especially, because if this was recurrent even after chemotherapy, perhaps my recurrence could have been because chemotherapy could not get to the area where the tumor was; in other words, no blood supply to the tumor.
Each doctor took the time with me to help me understand the plan in great detail. Dr. Green, Dr. Khan's resident, began by showing me a sectional Computer Tomography (CT) of my thoracic cavity with precise digital mapping of where the radiation beams would enter and exit. I had no idea that radiation beams could be so precise. Obviously, one of my biggest concerns was radiating body parts that should not be radiated, such as the pleural cavity or lungs, so this was really impressive to me. They targeted under my arm, around my breast, extending all the way up to the middle of my neck. I was able to meet the entire team of technicians that would help effectuate the plan that the radiation oncologist puts into place. There is a state-of-the-art imaging machine with many layers of checks and balances to make sure that the computer, along with at least three technicians, is properly administering the radiation. It truly takes a village!
Dr. Khan explained that my plan would be the typical protocol: six weeks, five days a week. This treatment plan sounded so daunting to me. I was not happy that I would need to leave my children during the summer for three hours a day, including travel time. I half-jokingly asked, "Wouldn't it be bett er if we could just crank up the radiation for a shorter period of time?!" I felt kind of stupid and silly asking a room full of doctors, technicians and nurses this question.
"Well," he said, "funny you should ask that, there are many different strategies and methods to deliver radiation therapy for breast cancer. For many decades, we thought about radiation after lumpectomy and mastectomy with a one-size-fits-all approach. This is different now."
He went on to explain, "We can deliver radiation to the whole breast over a shorter period of time, we call this hypofractionation." In simple terms, hypofractionated radiation therapy is "the total dose of radiation divided into larger individual treatments over a shorter period of time than standard radiation therapy," according to the National Cancer Institute.
"Oh my dear Lord, Halleluiah, praise the good Lord!!!! Sign me up, immediately; I don't even need to hear anything further!" I said excitedly. This was amazing news to me. This all came about because I simply asked! There was one hitch though – hypofractionation has been used mostly for women getting radiation after an initial lumpectomy. Its use after mastectomy, especially with a reconstruction, is less certain.
Of course, as with any treatment, we have to do our fair share of research before we decide. So we took the next couple of days to do a little research and what we found was nothing short of amazing. This therapy was presented in the 56th annual meeting of the American Society of Radiation Oncology (ASTRO), and it was found that hypofractioned breast irradiation was "associated with much less acute toxicity during radiation therapy compared with conventional fractioned breast irradiation and also led to improved physical well-being and less physical-reported and patient-reported fatigue six months later," according to The ASCO Post, which also found that trials that have compared "hypofractioned vs. conventionally fracti oned whole-breast irradiation showed equivalent rates of local control, overall survival and cosmesis."
This was quickly becoming the best news I heard in a long time. Jim and I had so many concerns with radiation. First and most importantly, was this treatment just as effective as conventional therapy? I certainly would not want to go through radiation if there was a lesser chance of a success. Secondly, conventional radiation therapy is extremely time-consuming! I would literally be required to travel 45 minutes a day to and from on top of the 40 minutes in the hospital to receive treatment for six, possibly seven, weeks! This was far too taxing on me and my family. Lastly, would the appearance of my skin and breast implants be compromised? Intuitively, I thought hypofractionaed would cause a greater chance of skin irritation and ruin my otherwise marvelous boob job, which, to my surprise, was the exact opposite! It was found to be less skin irritation! Bonus.
Jim thou ght long and hard, he did his usual research and Dr. Khan was nice enough to send him several articles published in peer review literature. I was sold right from the beginning, and after reading the studies we decided to go for it!
It is funny, I feared radiation the most and yet it was the easiest part. Do not get me wrong, it was a pain traveling to the hospital five times a week, but the actual treatment was much less invasive than getting blood work, scans and especially IV chemotherapy. The team at Robert Wood Johnson Radiation Oncology were fantastic, always greeting us smiles and ready to answer questions. We are blessed to have a facility, physicians and nurses of this quality so close to home. Funny how the things you feared most are the easiest.
Advice 1: Always ask the "silly" questions. If I had never asked about shortening my treatment plan, I may have never known about the hypofractioned therapy and had such a pleasant experience.
Advice 2: Check your breast every month, not just in October! As Jim says, "Squeeze a boob, save a life!" (Yep, that was his corniest joke.)
God bless!Amber Marchese
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Source: Amber Marchese's Blog: Overcoming My Fear of Radiation and Learning to Always Ask the 'Silly' Questions
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