Shiva's Stage IIIB Breast Cancer Healing Journey

Dear Reader,

 

Welcome to my GFM page. I sincerely appreciate you taking the time to learn about my healing journey with Stage IIIB Breast Cancer.

 

I started experiencing headaches, fatigue, joint pain, and tenderness in my L breast in early November 2019. Since the discomfort was different and new, I reached out to my care provider at Kaiser to schedule a Mammogram. The doctor who examined me in order to authorize a Mammogram assured me that what I was feeling was not cancer or anything else to worry about and that it was just my breast tissues. I insisted to have a Mammogram because I knew the pain was different but the Doctor again dismissed me from scheduling one and insisted that what I was experiencing could not have been breast cancer because in her professional expertise, breast cancer had no pain, which was not true.

 

In June of 2020, when the Covid-19 pandemic was at its deadliest peak I had to take a leave of absence for another health issue, bilateral wrist tendonitis. Three short weeks into my leave, a VERY large lump literally popped out of my L breast exactly where I was feeling the pain a few months back.

 

After a quick Mammogram, ultrasound, and biopsy the doctors at Kaiser confirmed that I was living with Stage IIIB Breast Cancer. At that moment my world collapsed. I could not believe what was happening and certainly had no idea how my life and the life of my beloved family was about to change FOREVER! I will spare you of the emotional trauma and fear that has taken over my entire being and that of my family since then. 

 

The suggested course of treatment was to immediately start 6 months of Chemo with two different drugs including the Red Devil. Then depending on the results we’d go to surgery which I had to decide whether to remove one or both breasts including lymph nodes, followed by Radiation therapy, bone infusion, and hormone therapy for the next10 years. A long list of mild and strong, short- and long-term side effects were also provided to me during this 20 min virtual visit with my oncologist along with scary survival rates and stats. All of a sudden in a rushed and urgent manner I was faced with making some of the biggest decisions of my life that literally involved life and death, as well as cutting off body parts!

 

For the love of life and fear of the loss that my family would have to endure, I decided to move forward with the Chemotherapy at Kaiser and at the same time started looking for care outside of Kaiser. I would like to express my eternal gratitude to Kaiser nurses who administered my Chemo infusion with compassion and competency, especially during Covide while they were under extreme pressure.

 

In November 2020, I lost insurance coverage through my employer. As a nonprofit struggling with the economic effects of COVID-19, my employer was not able to continue my medical coverage while I was on leave. Since December 2020, I went on a Covered California plan with a high in-network and a much higher out-of-network premium paying out of pocket for an insurance plan that provides coverage to a patient with a pre-existing condition.

 

After 6 long and tiring months of chemotherapy, I switched my care to UCSF for the rest of my treatment. I underwent general anesthesia and 3 consecutive extensive surgeries between January-March 2021 starting with a lumpectomy, 5 lymph node removal and a bilateral reduction. Unfortunately, the pathology report showed cancer cells in all the tissues and lymph nodes. Then I had a bilateral mastectomy, removal of 6 more lymph nodes and placed muscle expanders in case I decided to have breast reconstruction in the future. I did not want the expanders but decided to go with the plastic surgeon’s genuine expert advice. Within 2 days, I developed a severe infection to the expanders and was rushed back to the surgery room for the third time to remove both expanders and since then have decided to stay flat due to personal and medical reasons.

 

Due to the heavy impact of the complicated and rapid surgeries on the surrounding nerves, tissues and muscles coupled with neuropathy, fatigue, joint pains, and other debilitating impacts of hormone therapy, chemotherapy and Radiation I developed frozen shoulder on both sides and have been unable to property use my arms, especially on the L side. Additionally the medication and trauma have caused sever brain fog that has slowed me down in all aspects of life. Since I'm an advance cancer patient, I still need to have bone infusion and more hormone therapy as well as other therapies to strengthen and off-set the side effects of the cancer treatments on other body parts and my mind. 

 

While I have been collecting a portion of my income as disability, it was just recently that the insurance company informed me that 100% of the payments were taxable. During this time my husband had a hand surgery and went on medical leave for a while for recovery. Also his earning ability as a professional Trumpet player and musician took a hit during the pandemic. All of this made our annual income significantly less than what we used to earn before my diagnoses all while our expanses have increased dramatically. 

 

We have considered moving out of California to avoid financial disaster. This means being far from family and the community that has been essential in holding us during extremely challenging times and without their loving support I would not be here today. But more importantly because of the advancement of my disease we must stay in the Bay Area so my medical team can closely monitor my health as I undergo further treatments.

 

The past 1.5 years have been one of the most challenging and transformative periods of my life. I have been deeply humbled by the generous love and support of family, friends and strangers. I’ve had the privilege of gaining soul enriching lessons from living with pain 24/7, loss, grief, vulnerability, amputation, doing a close dance with death and actively participating in healing myself back to life. I am in constant awe at the beauty and the healing power of the body, mind and spirit connection.

 

Those who know me, know that being of service is my calling. I had the honor and good fortune to dedicate the last few years of my life to my career as a change maker by raising funds and advocating for gender equity and diversity in Technology. I have seen first-hand how the power of love and the collectives change lives and I know the same energy is supporting me through my personal journey as I heal.

 

Your financial support will allow me to pay for insurance and access medical treatments that I need to live as well as afford the essential living expanses of housing, food etc especially with high post pandemic prices in SF, Bay Area.

 

I sincerely and full heartedly thank you for giving me another chance at life and the resources I need to not only afford medicine but also stay optimistic as I continue to heal. I trust in the power of prayers, so regardless of financial contributions I am thrilled to recieve your prayers for my healing with open arms :) 

 

“Whatever the question, Love is the answer.”

Wayne Dayer

 

In Gratitude, Abundance, Peace & Love, 

 

Shiva Hematyar Joaquim