Johanna’s Story

Site created on October 23, 2013

UPDATE AS OF MAY 2023:

In October 2013, I was diagnosed with inflammatory breast cancer ("IBC", stage IIIB).  I successfully received 16 rounds of chemotherapy, followed by a left mastectomy, then 36 rounds of radiation treatment.  I do not have any known genetic mutations and I have an estrogen receptor positive tumor, so I continued on endocrine therapy for close to seven years after my radiation therapy.  I was seen by my oncologist every six months for a check-up, which included lab work and scans.  I was living a beautiful life in remission until December 2020, when my tumor markers started to elevate.  After numerous testing including scans and biopsies it was revealed that the original tumor resurfaced and spread to my bones rendering me with stage IV metastatic breast cancer, which is treatable, but there is no cure.   I am currently being treated at PENN by Dr. Angie DeMichele and we are considering all options from targeted treatments to clinical trials.  

Through this fight I will be channeling the unwavering support and love of my husband, my parents, my sisters, my BZY, and incredibly loyal and determined friends. My Nannie and Nonna are my inspiration as I move forward one day at a time, who, before me, faced this battle with dignity, courage and pride. I love and miss you Nannie and Nonna, you will be close to my heart, soul and spirit each and every single day. I pray that ALL my Angels are watching over me to help me find the strength to wake up each morning feeling determined, motivated and head strong to kick cancer in its ass and move forward with my life in pride, positivity and peace.

UPDATE FROM OCTOBER 2013:

Over six weeks ago my ever vigilant fiancé (then boyfriend) noticed a change in my left breast. I agreed with him and decided to seek medical advice, but before doing so I was on my way to Germany to visit my great friends and party at Oktoberfest. The day after I returned we noticed my left breast had become swollen and red. I immediately contacted my OBGYN and she got me in for an appointment the very next day, October 2nd. She told me it was probably nothing to worry about, but would send me for a mammogram and ultrasound as a precaution. On October 4th, I got my mammo and ultrasound and the radiologist noticed skin thickening in my left breast, but said it's normal and advised me to take antibiotics and come back in six to eight weeks for a follow-up. I decided to consult with my ever trusty, "go to" nurse and life long heart friend who immediately got me an appointment with a surgical oncologist at Abington. I spoke with the surgeon that afternoon who said he would see me on Monday, October 7th and told me to take antibiotics, because it's most likely a breast infection called mastitis. I started taking the antibiotics that evening. Over the weekend my boyfriend proposed to me in the most amazing way and we celebrated our engagement and my birthday with my amazing friends! On October 7th I met with the surgeon who examined me and said that on presentation it looks like an infection and advised me to continue to take the antibiotics and come back in two weeks for a follow-up. That diagnosis NEVER felt right to me. The surgeon gave me his cell phone number and told me to call him whenever...(he has an amazing soul and is an amazing doctor), so I followed-up two days later, October 9th, and told him I did not see improvement and that I was worried it was something more serious. He said he would see me on Saturday morning in his office to help calm my fear. On October 12th my mom, Danny and I went to the surgeons office and though he noticed some change in my skin he still felt it presented as an infection, but told me he would perform a biopsy on Monday. On October 14th I had the biopsy and on the morning of October 16th the surgeon called me and said the biopsy came back positive for cancer. He was shocked, the radiologist was beside herself and I was devastated. The next couple days were filled doctor's appointments, ultrasounds, bloodwork, MRI, CT Scan/PET Scan, etc... oh and meeting with a fertility doctor, because the treatment regime would most likely make me infertile. During that time I received an outpouring of support from friends and family. On the advice of friends, the CEO of Susan G. Komen and the founder of a non-profit aimed at young women who have been diagnosed with IBC we decided to seek an expert opinion from the world's leading authority on the disease, Dr. Massimo Cristofanilli, at Thomas Jefferson University Hospital. Dr. Cristofanilli is very passionate about finding a cure to this aggressive disease. He has recommended 24 weeks of chemotherapy, mastectomy and radiation treatment over the next year.

My family has decided to start this webpage on CaringBridge as a way to keep our concerned and supportive friends and family informed about my treatment, progress and well-being. In addition, I feel it very important to spread the word about IBC and being an advocate for your own health and body.

To my friends and family: you are my everything, your continual love and support gives me a reason to fight and look forward to each and every day. I cannot express how much I appreciate all the texts, emails, prayers, positive thoughts and gifts of love. THANK YOU, THANK YOU, THANK YOU!!!!

Newest Update

Journal entry by Johanna Conicello

A couple months ago I asked for prayers for “equanimity” in my “Highway Hypnosis” journal entry.  It was a term that my boss used during one of our conversations last fall.  My boss is a lawyer who I have worked closely with for almost 14 years.  So, he knows me and knows my history with breast cancer fairly well.  He is whip smart, witty, an analytical listener, and logical—a true litigator who has endeared himself to me as a boss, mentor, and friend.  We were discussing the adverse reactions I endured throughout the variously-failed treatment therapies I’ve had to date.  I plead my desire to find stability in a treatment plan and that I have accepted the fact that I will be in treatment for the rest of my life, but the constant set-backs and unwieldy challenges have made any sort of structure or consistency in my life impossible.  I indicated that I am totally fine with hair loss, and some of the other unpleasant side effects that come along with chemotherapy, so I was prayerful that switching the chemotherapy and reducing the dose would help me find some sort of “peace.”  To which he responded, “you are seeking equanimity.”  “Sure,” I thought, not really understanding the meaning of the term, but I agreed and did what most Paralegals do and thoroughly researched “equanimity” once we got off the call.  Since then, I have been enamored with the word, the meaning, the idea, the philosophy, the concept, and the practice of equanimity.  Equanimity is defined in the Oxford Dictionary as “mental calmness, composure, and evenness of temper, especially in a difficult situation,” but it is so much more than a definition.  Equanimity is derived from the Latin words “aequus” and “animus”; the Latin phrase “aequo animo” means “with even mind.”  In Buddhism, equanimity is neither a thought nor an emotion, it’s a mindset, a virtue, a practice that you can cultivate.  It is deeply connected to Buddhist theory of impermanence that “everything changes and nothing lasts forever,” which has somewhat been my mantra in dealing with my cancer diagnosis for so many years (more so “uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security”).  So, it is no surprise that the idea of “equanimity” really struck a chord with me.  Since my original diagnosis in 2013, I have been practicing ways to accept my reality amidst the unpredictability of this disease.  I search for peace of mind by leaning into my faith, practicing yoga, dabbling with meditation and grounding as an attempt to regulate and make sense of my emotions.  Years ago, my dad shared a poem with me called “If” by Rudyard Kipling (circa 1895) and the poem is open to interpretation, but it has quietly (and perhaps unbeknownst to me) guided and deepened my understanding of seeking equanimity in life: “if you can meet Triumph and Disaster and treat those two imposters the same . . .” these words have echoed in my head for years.  Equanimity is not the absence of emotion, but the ability to ride the wave of uncertainty with evenness and the understanding that nothing lasts forever.

How do you develop or cultivate equanimity?

The best teacher is experience and I totally agree with Mark Twain when he said “what is joy without sorrow? what is success without failure? what is a win without a loss? what is health without illness? You have to experience each if you are to appreciate the other.” These emotions swing on such a wide pendulum that you have to regulate its trajectory so you do not go crazy.  So how do you regulate that trajectory?  I have found solace in journaling, in breath work, in yoga, in my faith, and in freeing myself from expectations.  But not all humans are deeply, deeply emotional beings trying to make sense of all our pains and sorrows.  Some of you are more practical.  For instance, after some of our most grueling days my husband exhibits a very strong sense of equanimity by going to his “nothing box” and flipping through the TV channels.  I often wonder what he is thinking or feeling and his typical response is “nothing.”  And I truly believe him.  His ability to find equanimity in our chaos by going to his “nothing box” is frankly amazing and should be studied in the world of psychology.  Me, on the other hand, needs time and space to process each and every single one of my emotions often blocking people out, journaling my thoughts and then praying about them until I reach some level of peace and acceptance (equanimity?).  For years I have been telling anyone newly diagnosed seeking my support to find their “faith,” in a non-denominational way, because I do not want to sound too preachy about how my own faith has saved me through this journey.  Here my boss introduced me to a word that better describes the “faith practice” that I have been developing and encouraging others to seek.  And now it is my mission to continue to practice and inspire others to reach higher levels of peace, acceptance, and understanding, especially when your flow unexpectedly ebbs.  Equanimity.

Looking back now, I have noticed at some point within the last 365 days developing a greater ability to process discouraging news than ever before.  I noticed that I am more present and not as hyper-sensitive about what the future holds.  And I noticed that I rarely think of the past except for the lessons that it taught me.  The past twelve months have been the most difficult test of endurance that I have met to date—my disease was not under control and I increasingly felt more and more unwell.  The last two months I have reached some level of stability in my disease and, even though, I am experiencing hair loss, taste buds are changing, bone/joint pain, some unpleasant GI issues, and sleeplessness—my practice of equanimity especially throughout the recent hardships, are now being realized (or better defined) with my current state of permanence, but I am always reminded that “everything changes and nothing lasts forever.”  And that’s ok—equanimity is the Holy Grail of peace and calmness.  It takes practice, maybe a lifetime of effort to reach the highest level of equanimity.  I encourage you to find a practice of equanimity or your “nothing box,” especially if your life is not how you envisioned.  Find a place or mental space of evenness and contentment, so that you can chose emotional stability as opposed to emotional reactivity when external events attempt to attack you or disrupt your present state.  Peace of mind regardless of the circumstance is the ultimate goal for a happy life.

I shared my practice of equanimity with my Acupuncturist, who is trained in Western philosophies of healing.  She was impressed with my yearning to adopt equanimity in my life and shared the following phrases with me, which I hope helps you better understand and cultivate the practice:

Things are just as they are.

May you accept things just as they are.

May you see things clearly just as they are.

May you hold your joys and sorrows with equanimity.

May you accept each joy, May you accept each sorrow.

May you be free of clinging to the pleasant and pushing away the unpleasant.

May you rest in calm.

May you rest in not knowing.

May you remain unshaken by life’s ups and downs.

May you be undisturbed by the 8 worldly winds: praise and blame, success and failure, pleasure and pain, fame and disrepute. 

May you be free of desire that life be different and accept life as it unfolds not according to your wishes.

Medical Update

Since my scans in mid-January, I have continued on the same treatment plan: reduced dose of Abraxane every three weeks, with one week off.  My blood counts have been stable and I am feeling stable.  I see my oncology team every week and we are going to continue on this treatment plan for the imminent future and I will get scans in June.  I have not been able to fully resume physical activity, due to some nerve issues and bone/joint pain associated with the cancer and/or the chemotherapy.  I am prayerful to resume a consistent yoga and cycling practice, but in the meantime, I have a walking crew keeping me accountable and have purposefully walked over 50 miles since the beginning of the year.  I have felt a renewed sense of purpose and peace in the chaos that is cancer—it is not perfect, but I’m going to hang onto the pendulum swinging this direction for as long as possible.  I was able to enjoy a long weekend away with my family in Florida, a night out in Philadelphia and a day/night in New York City without “Faking Healthy.”  I simply felt present and happy for the change of scenery with my people.  I continue to pray for equanimity, stability, peace, good health, happiness and for my ability to participate in exercise and for all of it to sustain me for a very long time.  I am so blessed with such a loving and supportive group of people in my life who pray for me and have continued to support me through all the ebbs and flows.  Please know that the feeling is reciprocated and my love and prayers flows to you as well. 

“Every moment of equanimity is a moment of waking up from the delusion that things should be as we want them to be.”

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