In the first week of May, 2017 I got the phone call no woman wants: "Your radiology report shows questionable tissue in your left breast. We need you to come back in for an ultrasound guided biopsy." It was a follow-up from Virginia Mason Hospital regarding a routine mammogram.
From that moment, my world was forever changed as I began my relationship with breast cancer.
This news brought fear and uncertainty in the midst of an already uncertain time; my husband and I are in separation after 16 years of marriage. 2017 began with our separation on January 1st. Through the early parts of this year, I had already been grappling with the foundation of home and marriage becoming unstable. I chose to leave. I chose to walk away from so many familiar sources of comfort, the soothing routine of my daily life. And now I’m facing cancer- alone. I’ve been forced to befriend solitude in a time when I most need support. I’ve been forced to test my resolve to be on my own during one of the most painful moments of my life. This is where my journey begins.
May 8th, 2017: Ultrasound-guided biopsy.
Until this round of screening, the mass found in my breast was considered benign. Results concluded that I had a tumor in an already existing mass that I had found 7 years prior. From this point forward, the cancer became real and took the sovereignty I thought I had over my body.
I was sitting in my car about to teach a private yoga class when I got the call. I was crushed, heartbroken, and scared. I felt a deep heaviness in my chest. It took my breath away. I sat there staring at the steering wheel of my car, vision tunneling,heart racing.
I tested positive for invasive ductal carcinoma (IDC).IDC begins in the milk ducts and spreads to the surrounding fatty tissue of the breast. It accounts for about 80 percent of invasive breast cancers. That morning, I was told a lot of information in a language that I didn’t yet understand (and am still learning). The hard fact was that I was about to start treatment and had some really big decisions to make about my life.
May 18, 2017: MRI-guided biopsy.
For this test you are injected with contrast dye through an IV, then rolled into an MRI machine for a series of VERY loud, clanky scans. About halfway through, they inject a large needle (9 gauge core sample) into the breast and take several (8) tissue samples for more analysis. A second non-invasive mass was found: “There is a broad area of nonmasslike enhancement in the outer quadrant existing from the pectoral muscle to the nipple.”
At this juncture, my disease was considered Grade 1 (good) which is low aggression or, as my oncologist likes to call it, a lazy cancer. The pathology report states it is HER2 negative (good) and estrogen/progesterone positive (also good for treatment). As far as getting cancer goes, I was dealt a solid hand. Until I wasn’t. And I’m sure there’s a poker term here for when you think you’re dealt a solid, and then it turns to shit.
June 14, 2017: Lumpectomy with breast reconstruction.
It’s important to look at the bright side of these things. After a consultation with my surgeon, she enthusiastically reported that she would gladly give me a nipple lift since my breast will need to be “rebuilt” after removing the two masses. I have to say that she did a really nice job on that. Thanks Dr. W. I was focused on my nipple, but during the surgery, six lymph nodes were removed and biopsied.
June 16th, 2017: Reading of results.
Two days after my surgery, pathology results came in. Results showed that a trace amount of cancer was found in node #5, one of the lymph nodes they’d removed to see if the cancer had metastasized. This discovery leveled my cancer up to Stage 2a. The results showed clean margins found around the invasive mass, but not clean margins for the other non-invasive tissue.
My poker hand had gotten a lot worse. I was getting settled back in at home with my mom and a close friend with me when I answered the call. Still very weak and fragile from the first surgery, on pain medication, and trying to process this news, I heard my doctor speak the words that it spread into the lymphatic system, one of my lymph nodes showed trace amounts of cancer. AND there was still cancer remaining inside my body. I wonder for the first time, “Could this cancer kill me?” as I face with potential chemotherapy and the fear that it may be found in other parts of my body. This news also means another invasive surgery, as we have to go back inside my body to try to cut out the rest of the cancer around my nipple. That’s the thing with cancer, it’s like a ninja - dark and sneaky and shadow like.
Next, my tissue is sent to a lab in LA for an oncotype test. The test helps patients determine whether chemotherapy will be beneficial or harmful. I’ve failed my share of tests in my life, but this is the one I really hope I bomb. After three long weeks of waiting (you do A LOT of waiting through this process) my score came back an 8 - out of 50. You want a low score for this test. That’s a solid fail. No chemo for Jules. Whew, relief.
Side note: My parents have been such a strong support through all of this. They are also my means of transport. They have come to all appointments and have supported my anguish and sorrow with unfaltering love. During my next surgery, they came and sat and wait. I emerged from the first surgery drugged up and sore; my parents dropped me off at Evan’s for after care. I was really messed up after the first surgery. Swollen, bandaged, immobile left arm. 10 pounds of fluid retention. Changed. Never to be the same. Never to feel quite at home in my physical form. Scarred.
June 15th, 2017: Genetic testing.
The very next day I did the BRACA gene mutation test to see how all 33 of my genes look. This test shows if either of two genes (BRCA1 or BRCA2), if inherited in a mutated form, may predispose some carriers to develop breast or ovarian cancer. After 3 weeks of waiting, I tested negative for any gene mutations including the BRACA genes. Regardless, I am always wondering when and if the cancer coming back.
July 11, 2017: Second lumpectomy surgery.
I had an extraordinarily long wait this time in pre-op which happens sometimes. I was the second patient of that day so my start time depended on when the first surgery was completed. My Mom and I sat together, tears running down our faces as we watched the hours go by. She held my cold hand and told me she loved me. I was missing Evan terribly, wondering why he hadn’t called to wish me strength and a positive outcome. During this time he was taking a MUCH needed vacation and believed I had the support I needed. I was vulnerable, terrified, and desperately needed to know he was thinking of me. Because of where we were in our separation and personal growth, he was taking care of himself while I was taking care of myself. It felt desperately lonely and frightening.
The procedure included general anesthesia, breathing tube, pain medication, reopening a tender scar tissue from the last operation, and the process of reawakening from a deep dark place. The works. It is not an easy surgery. The sense of not being in control of hits you hard when you wake up from a drug induced unconsciousness. Having no conscious memory of the procedure is both a relief and a nightmare. This time around, recovery on a physical level was less traumatizing, but on an emotional level, I felt devastated. I had to keep telling myself, “All the comfort I need is in me.All the home I need is in me. All the support I need is in me.”
And even though I KNOW this, it is still an enormous mountain to summit. As the days passed and I got back to the things and people I love, I found my feet. I cradled this wounded breast, wiped the endless stream of tears and walked on.
I have radically upped my game on self care. Healing for me includes, but not limited to:Rest, retreating, manual lymphatic drainage, massage, laughter, meditation, CBD and THC consumption, energy work, yoga and AcroYoga. Talk therapy. And after radiation, the disease will need to be treated with Tomixifin will last 10 years and is a very expensive drug.
July 14th, 2017: Test Results Round 2
The labs come back from my second surgery. Again, the margins are not clear. (Insert suspenseful poker reference here). Hearing this left me speechless and defeated. How can I move forward through this with another set-back. How will I recover this time? What will my boob look like after three incisions in the same spot? My femininity, my familiar shape and feel, my beliefs about my beauty or lack there of, the curves I have struggled to love and accept - now carved and reshaped to be cemented by the scar tissue layered upon scar tissue. Will I find love again? Will another human see my beauty beyond my scar?
I have now come through two surgeries to remove the masses, and will endure another in early August. After the cancer is successfully surgically removed and the tissue healed, I will begin radiation therapy and hormone therapy (antiestrogen therapy). In addition to Western Medicine, I am exploring alternative forms of healing that are not covered by my insurance.
I have begun to realize that this is a time to put away my pride and independence and ask my friends and family for help. All of this is physically and mentally draining but, in certain ways, has been and will continue to be be fulfilling as I reach out to friends, family and other women survivors for strength and emotional support.
The time is now to widen my scope to share my story.
So many people are lovingly asking me, “How can I help?”
Here are the ways:
If you think of me, give me a call or send me a text reminding me that it’s okay to feel all feelings. If you see me just give me a hug and tell me you love me. Ask me for a walk or to share a meal. Ask me how you can support me rather than telling me what a badass warrior I am, cause honestly that doesn’t really soothe me. And even a warrior feels broken, depleted and lonely sometimes.
If you are inclined to donate to my medical costs and have the means to help, your contribution would give me relief from the constant stress of covering the expenses of this disease. Care, treatments and talk therapy will be crucial to my emotional and physical healing for the near and distant future.
All of these things are crucial to my healing process, and I can’t do this alone. As I continue to write, share, and connect with you - I know more needs will arise and I will name them. Asking for what I need is one of the most valuable lessons I’ve learned on this journey.
I thank you in advance for any support you can give.
With love and gratitude, Jules
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