Meet Tamara Zhilyaev

Today we’d like to introduce you to Tamara Zhilyaev.

Tamara, let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
I was 12 when my mother was diagnosed with breast cancer. She endured chemotherapy, a double mastectomy, and reconstructive surgery. She was always active and overall, a healthy lady. I watched her in pain and fatigued beyond belief. She passed away in 2000 when the cancer came back in her liver after my parents’ 20th wedding anniversary cruise. I was barely 16. Then, my paternal grandmother was diagnosed with breast cancer. And if that wasn’t enough, my dad’s sister was also diagnosed with breast cancer. To say that I have an extensive family history is a bit of an understatement. Due to my family history, I have always been diligent about self-exams, taking lower hormone birth control, and enthusiastic about making others aware. For years, I, with my family, friends, and coworkers have done numerous Races for the Cure, Relays for Life, and the Phoenix 3 Day Walk in 2013.

Fast forward to 2018. I’m 33, my husband finds a lump in my right breast and after multiple mammograms, ultrasounds and biopsies, I am diagnosed with Invasive Ductal Carcinoma, Triple Negative Breast Cancer. Since April 2018, I have had 16 rounds of chemotherapy, a non-nipple sparing bilateral mastectomy with immediate reconstruction, 33 rounds of radiation, and I am currently doing 24 weeks of an oral chemotherapy. TNBC occurs in roughly 15% of women and is most frequently seen in younger women, African American and Hispanic women, and those carrying the BRCA-1 genetic mutation. I fall into only one of those factors – my age. I do have the BARD-1 genetic mutation. This mutation does have a predisposition for increased breast cancer risk and requires a full genetic panel. TNBC is a more aggressive form of breast cancer that has a higher rate of recurrence because there are not any targeted therapies for it (unlike hormone positive cancers) and that it can quickly grow and spread beyond the breast tissue.

All of this news was frankly terrifying to hear for both myself and my husband. We both took off work the day that I got the news. We sat together, cried, and at the time, had no answers, only questions. Since that day, we have turned the corner and are able to laugh about it. My husband and I have a bit of a twisted sense of humor and many times, we have been able to make jokes about my diagnosis, treatment and other things along the way. Honestly, it is one of the things that keeps me going.

Throughout my treatment, I have continued to be active hiking, dancing, leading my alumni group, blogging about my cancer experience, and most recently, becoming a co-organizer of The Laurus Project’s new Scottsdale Thrive Tribe. The Laurus Project has several groups all over the country and provides breast cancer survivors with research, information about innovative therapy, as well as a safe place to meet with other survivors.

Cancer has taken a lot of the normalcy out of my life, but I have refused to let it take control of me. I have said no to a lot of things that I just wasn’t feeling well enough for, but I have pushed myself to get outside, to be with friends, and to travel when I’m able to, despite still being in active treatment.

Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
Cancer is one giant obstacle course. When you finish one hurdle, there’s another one at the next turn. One of the first jokes I made about my cancer was that I have unicorn cancer. One night, my breast surgeon called me at 9:30 pm and told me that my tumors were exhibiting signs of possibly not responding to the chemotherapy by acting like other kinds of tissue. This sent me on a journey to MD Anderson in Houston to meet with an oncologist who specializes in TNBC with a backup plan for a clinical trial in case the chemotherapy didn’t work as they wanted it to. Luckily, my tumors behaved and responded incredibly to the chemo.

The next hurdle that I’m still dealing with is waking up from my 7+ hour mastectomy with a fraction of my voice and difficulty chewing and swallowing. I woke up and immediately knew something wasn’t right. The jury is still out on what exactly happened, but the nerves to my tongue and left vocal chords were pinched and essentially fell asleep (think if you sit on your leg under you for too long). I have since seen multiple ENTs and underwent a procedure at Mayo Clinic to inject a filler into the vocal chords to help them to their original position. My mastectomy was the first surgery I ever went under general anesthesia for and it is believed that what I have is called “Tapia’s Syndrome” assuming that it continues progressing and repairing. It is rare. Again, I am a unicorn.

Please tell us more about your work, what you are currently focused on and most proud of.
I am a paralegal for my day job. My firm (Carpenter, Hazlewood, Delgado & Bolen in Tempe) has been absolutely amazing since day 1. I was working between appointments and treatments and eventually, my blood counts were too low and I was too fatigued to continue going into the office, but my HR manager advocated for me to get a laptop so I could continue working from home. The flexibility they have given me to be able to go to Houston, to rest when I need to, to travel to multiple appointments in a day, I cannot put a price on. I have run into so many people who’s jobs have said “we’re sorry to hear that” and then, they have essentially been shown the door. It makes all of the difference in the world when your employer says “We only want you to have to go through this once and your job is fighting this. Come back when you are 100%.”

Is there a characteristic or quality that you feel is essential to success?
Through this journey, I have learned to give up some control and to focus on the things I do have control over. We’ve all been in the waiting room and it seems like everyone is being called before you. Through that waiting game, I’ve been able to become quite zen about the seemingly endless waiting and I have used that time to blog about the good and the bad of cancer, to create a record and created an outlet for my thoughts. Being able to not stress as much about the little things has helped my mind because I can put that energy to other things and then I’m also not just watching the clock all of the time. There’s also so much that we don’t have control over as cancer patients. Our treatment schedules, doctors appointments, hair loss, or surgery options are all very limited choices. You have to make the conscious effort to take control over what you can, like cutting off all of your hair before it has a chance to be taken from you.

Contact Info:

• Website: https://tamaraskillertitties.wordpress.com/
• Email: tamara.zhilyaev@gmail.com
• Instagram: www.instagram.com/tambeeslyhalpert
• Facebook: www.facebook.com/tamarasnewfoobs
• Twitter: twitter.com/tamtampsu
• Other: https://www.thelaurusproject.com/thrive-tribe/

Image Credit:
ByrdsPhotos, Tara O. Photos

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