Meet Joyce And Connect With Her Profound Story
Hi
I'm Joyce, and this is my story.
I had been going for early mammograms starting in my mid-thirties because of a family history of breast cancer. In addition, I tried to do self-checks as much as possible. My breasts have always been very dense and painful so I was always a wreck when I did the self-check. Never having been quite sure if I was doing it right, but too nervous about possibly getting breast cancer not to do it. When I was 44 years old, I felt a hardness on my left breast during a self-check. At this time I had been working a lot and it was very hard to get to the doctor as they only saw people mostly at inconvenient times. Instead of going to my PCP, I went to the walk-in clinic on a Saturday.
In the clinic, a doctor with an amazing bedside manner gave me an exam. I don’t know if she actually felt my tumor, or if she was just doing her due diligence, but she wrote out a script for me to have me have an ultrasound on both breasts. By doing this, SHE SAVED MY LIFE, I later learned.
I didn’t think much about the ultrasound until the day of, and then of course, like usual, I was a nervous wreck. As I lay there and the technician scanned my breasts, I kept saying to myself, “It will be nothing. Don’t worry.”
When the technician was done, the radiologist told me that I had a tumor in my right breast, and two other suspect points they wanted to get a closer look at. I would have to have a biopsy and an MRI. I was sure I heard the word “cyst,” so when I met the nurse to schedule my appointments, I asked her, “I have a cyst right?” She said to me, “No. You have cancer.” I started crying hysterically. The nice nurse gave me tissues and consoled me. I called my husband to tell him, and then I called my parents who live in Washington, D.C. I cried and drove myself home. When I got home, I told my kids who were 13 and 11 at the time. By the time my husband got home from work, we were all crying.
My first biopsy came back positive for HER2 breast cancer, which is an estrogen-based cancer. The genetic testing showed NO genetic component, despite my family history. The MRI also showed two more spots of concern more clearly, and so I had my second biopsy. That’s when I learned that no two biopsies are the same. It REALLY depends on who is doing it and where.
The first was with the Head of Radiology, Dr. Kelley at Dana Farber. in Weymouth. The second was with a young doctor in the hospital. The doctor kept trying to get at the site which was close to my rib cage, and the nurse kept repeating, “You didn’t get it doctor.” After jabbing at me for what seemed like forever, they finally sent me home and told me to wait for the results. Shortly thereafter, I got a call asking me to come back to Dana Farber for a third biopsy.
When I got there, I saw that Dr. Kelley was there again. It was St. Patricks Day, and he said to me, “Joyce, I am SO sorry about having to do this again, but we need to do it. It’s in a tough spot, and it’s going to hurt A LOT.” Then he proceeded to get in and out of there like lightning, and he didn’t hurt me one bit. He made it easy for me. He told me, “Now, go drink some green beer.” I trusted him completely because he made it all about my comfort. Doctors should know that probably is the most important thing for a patient: Good bedside manner. For me—it was EVERYTHING.
The pathology confirmed that it was cancer. Again, someone SAVED MY LIFE because they went above and beyond. Dr. Kelley told me and my mom (MY ROCK) later that he just “knew that the radiologist in the hospital hadn’t gotten the spot” and “the radiologist in the hospital was probably nervous about puncturing your lungs and killing you.” He had been doing it long enough, he told us, to know that the spot he saw on the MRI was indeed cancerous just by looking at it. I asked Dr. Kelley to be my nuclear medicine person for my lumpectomy in the hospital. He came in early just for ME. When we met him at the hospital, he walked my mom and I through everything, and once again he made everything easy for me, and pain free. He prepared me for everything so when it happened I was okay.
I had a second lumpectomy to get clear margins. I was then officially diagnosed by my three doctors, Dr. Nimbkar (Surgeon), Dr. Faggen (Oncologist) and Dr. Macausland (Radiologist) as Stage 2 HER2 positive breast cancer.
Three out of five of my lymph nodes they took out also had cancer. So while my tumors weren’t bigger than a fingernail, they had already spread. Which meant chemo and radiation. When it spreads they give you the HARDCORE chemo. I had a village around me and it was the hardest thing I have ever done.
Two months of the chemo Adriamycin that is nicknamed the “red devil” because it is bright red and destroys everything bad (and good), and Cytoxan (which is only a LITTLE less bad). This was followed by three months of Cytoxan and Herceptin. HERCEPTIN IS A MIRACLE DRUG. It saved my life too.
In 1991, my type of breast cancer went from being a death sentence to curable. Of course, it had side effects. The top of the list is that it can affect your heart. On the advice of my acupuncturist I took COQ10 to protect my heart. Every two weeks I had to get my heart checked in the hospital.
The worst thing for me, though, was the steroids. Most people look good while on chemo because they can take steroids, which helps them keep the immune system fighting, makes you less sick, and of course I am highly allergic to steroids. The only way I can describe how it felt when I took the high dose of steroids is that I wanted to crawl out of my body. For four days straight I couldn’t do anything. Not eat, not sleep, not stand, not walk. I couldn’t exist. Nothing was comfortable and time was agonizing slow. If it weren’t for my village I WOULDN’T have made it.
I had to quit my job as there were too many germs in the school where I worked. I couldn’t hug my kids or kiss my husband (who also is a teacher) during this time. Also, I had just gotten hired at this school so I didn’t qualify for disability or unemployment (Thanks America!) So we tightened our belts financially and lived on credit cards. (NOT RECOMMENDED).
Before chemo I had shaved my head per advice online. It did feel empowering, and two weeks into my first chemo infusion I lost all of my hair, stopped having my period, and got really sick. My infusion nurses, Anne and Jenna, made sure that I was as comfortable as I could be. They are ALL superheroes. My oncologist, my nurse oncologists, and everyone were a part of my village. Because my body couldn’t handle the steroids I kept losing weight. At one point I was one hundred pounds. I haven’t weighed that little since middle school. I got thrush (childhood disease if you were wondering) in my throat so I had to eliminate sugar completely from my diet which made it extremely hard to eat because all I could eat was liquid lunch. I couldn’t even have fruit or bread! And I NEEDED TO EAT! I got acid reflux that was SO painful, also making it hard to eat! I felt one hundred years old. I felt like I was dying. My mother would make me walk around the block every day just to keep my body going, and I could barely do that. Everything hurt in my body, and I was so tired and weak. At one point I spiked a fever that wouldn’t go away so I had to have my first blood transfusion. It was a strange feeling to say the least. I always liked vampire movies but this was NOT cool.
During this whole time my mom, dad, and husband made sure that the kids got off to school, food was put on the table, and house was cleaned. (I CAN’T THANK THEM ENOUGH). Next, was six straight weeks of radiation. Dr. Macausland, my radiologist, made this easy for me, as did all of her technicians. These days radiation is such an exact science. They tattooed little blue dots around my breast that look like constellations, and zapped me 15 minutes a day. By the end of six weeks my front and back were on fire and really raw. It goes right through you! The last was six more months was just Herceptin infusions and then finally removal of my port. By that time my hair had started trying to break through. Oh yeah! Forgot to mention that you lose hair on your head, eyebrows, body, nose (I constantly had a runny nose), and ear hair (which helps you balance). They all returned, thankfully.
I will continue to see Dr. Faggen for checkups for the next ten years that I will be on the drug tamoxifen to keep the cancer from coming back. Dr. Faggen has been the MOST supportive doctor I have EVER had. She ALWAYS has time for me, and she is always kind and patient. She even asked me to do a photo shoot with her at Dana Farber for an article on young breast cancer patients. Now I am two years “No Evidence of Disease” (what they say now because it can always come back). Now, I can be a parent again, a wife again, and a daughter again. I get a second chance. My family has started to heal slowly. We got a puppy named Asher from the Northeast Animal Shelter. He brought unconditional love in the house and joy. He brought us together. He licked our tears and made my kids smile for the first time in awhile. I am so thankful to my village for helping me through this. I am thankful for my wrinkles and the chance to get older. I am thankful for the lessons I learned.
I do yoga, I meditate, I laugh, and I let go of things that don’t serve me now. I am living, to quote my favorite guru Allan Watts, in the ETERNAL NOW where life is.
Follow me on IG @Joyceraskinbooksandstuff
Thank you for sharing your story, Joyce. We love you.
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