Metastatic Diagnosis Provides Teachable Moments: Catalina Tamayo

Written By Robin Warshaw, Contributing Writer

Although she was a nurse, Catalina Tamayo admits she didn’t really understand what it meant when she was diagnosed with HER2-positive metastatic breast cancer at age 31. So she’s not surprised that some of her co-workers don’t understand either.

“When I say I was diagnosed four years ago as stage IV, they say, ‘Well, you’re cured now, right? Because you look fine,’” says Catalina, who lives in Petaluma, California with her 9-year-old son. “I’m constantly having to explain to my fellow nurses and doctors (if they’re not in oncology) what it is to have metastatic disease.”

Outside the medical profession, more people don’t get it. They ask when her chemotherapy will end. “I have to educate them that I’m always going to be getting some kind of treatment. That if I stop, then the cancer will grow and I’ll die faster.”

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After diagnosis, Catalina’s oncologist urged her to join a phase I clinical trial at a hospital in nearby San Francisco. The trial gave her a standard chemotherapy medicine but added a new medicine under study, which she took as a pill. She also received trastuzumab (Herceptin).

During 6 months of weekly trial treatment, she developed severe nerve pain from the chemotherapy. Her scans showed no evidence of disease. “I told the doctor I need a break,” says Catalina. “I was thinking about my quality of life.” She left the trial, switched to other chemotherapy and stayed on trastuzumab.

Navigating Relationships

Catalina’s son had just begun kindergarten when she was diagnosed. “As long as he’s had memories, he’s only remembered me with cancer,” she says.

These days, he doesn’t want to talk about her breast cancer. He gets sad when she can’t go on school trips like other parents because she has doctors’ appointments. He asks why he can’t have a sibling, although he understands she is unable to have more children because of ongoing treatment.

Catalina and her son are very close. She encourages him to do things with other people, but he resists. “I don’t know if it’s a fear of me not being here,” she says. “I’m trying to get him to be more independent.”

Her family lives 2 hours away. Before breast cancer, she drove to see them, but treatment, work and financial strain made that too hard. “My family doesn’t drive out here because they’re really poor and can’t afford the gas,” says Catalina.

She’s also lost connection with some people she once considered friends. “When I was first diagnosed, I asked a friend to take me to chemo. She said, ‘I already made a hair appointment for that day.’”

Catalina attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in 2015 and other conferences. She finds support in online groups for young women with metastatic disease. “It’s kind of a sisterhood,” she says, where she can talk about worries and frustrations, ask questions and share suggestions. “We all help each other.”

A New Job

Most of Catalina’s medical bills were covered while she was in the clinical trial. After switching treatment, her health insurance from work paid part, but out-of-pocket and co-insurance costs created medical debt. She changed jobs, now pays her own health insurance premiums and has fought with the insurer about wrong charges and coverage denials.

Catalina was hesitant to talk about her diagnosis at her new job as a medical-surgical nurse. Often assigned to post-mastectomy and other cancer cases, she gradually opened up about her experiences to patients and co-workers. Telling her story in this setting inspired her to work in chemotherapy treatment. She’s now waiting for her employer to approve funding so she can take the classes and training she needs to become a certified oncology registered nurse

“I feel like because I know what it’s like to have cancer, I have a better understanding of what people are going through,” she says. “I can better empathize with them.”

 

Learn more about clinical trials for metastatic breast cancer.

This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

#mybodytude: Redefining Beauty After Diagnosis and Treatment

Tonie Jones, panelist for our July 14 Breast Cancer 360 program,  blogs about redefining beauty for #mybodytude. Read other posts in the mybodytude photo diary series.

After she began treatment for metastatic breast cancer, Hear My Voice Outreach Volunteer Tonie Jones forced herself to rediscover her body’s strength and beauty. The esthetician chronicles her “bodytude” from before diagnosis, after and beyond in this photo diary for the #mybodytude campaign.

Go to Instagram and share your selfie after a breast cancer diagnosis – use #mybodytude and you’ll have the chance to win a Visa gift card!

Visit LBBC.ORG to learn more about this selfie contest and campaign.

Tonie 1

My name is Tonie. At the age of 43 I had started a new career as an Esthetician and Makeup Artist. I was finally living my dream. I was also thrilled that I had finally gotten back down to a size 10 in jeans. Little did I know I was thin because I was sick. Four months after this picture was taken I was diagnosed with Stage IV Metastatic Breast Cancer. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 2

I was scared of so much. I was scared of how cancer would change my looks. I was scared of how my clients would react to me as I began to lose my hair and eyebrows. But, mostly I was scared of dying and leaving my three daughters without a mother. I had to fight and, I had to live. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 3

Man, did my makeup skills come in handy once the hair was gone. I did a lot of wigs and head wraps to hide my diagnosis at work from clients. But, when I would get home and wash it all off I had to face the reality of my life. The image in the mirror minus the makeup and wigs was hard to swallow. It was like watching myself disappear slowly. No hair, no lashes, no eyebrows and no facial expressions. I had become a shell of the person I once was. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 4

As my hair began to sprout up I faced the challenge of losing my breast. In August 2014, I had a double mastectomy without reconstruction. Talk about changes to your #mybodytude. After, losing so much of myself I physically I had to dig deep emotionally to find myself again. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 5

This picture was taken at my fist LBBC conference for MBC. This was the first time I was in room with other women who had the same body challenges that I had. It was liberating to look across the room and see others who had just grown their hair back, had just lost their hair and other beautiful women who were breastless. It was the first time in a long time that I had felt beautiful and not embarrassed about my body in really long time. #mybodytude #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Tonie 6

This is me today! On July 15th, it will be two years since chemo ended. I’m not cured but I am stable. I am grateful for everyday that comes. The brows are thinner, I am back to wearing my wigs and extensions, Although, I work out pretty regularly I am 25lbs heavier than I was when I was diagnosed. Everyday, I find an issue with my body. I hate summers and tank tops. It’s so hard to work that out with bras and prosthesis. I begin my journey of reconstruction in October. All that being said life is to precious to really worry too much about the extra pounds, and stunted hair growth. I look in the mirror and I see me. Beautiful, strong, courageous me. That’s my #mybodytude. #breastcancer #bodyimage #baldisbeautiful #bodypositivity #dontignorestageiv #cancersucks #bcsm #breastcancerawareness #metastaticbreastcancer

Share your bodytude after breast cancer on Instagram with #mybodytude! Follow these instructions for the chance to win a gift card for joining the campaign.

See what others are posting to #mybodytude on Instagram.

Get more information and hear more of Tonie’s story during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


Tonie Jones is an ethetician in the Denver, CO area known as The Brow Snob. She was diagnosed with metastatic breast cancer in 2014. Follow her on Instagram: brow_snob.

#mybodytude: Physical Changes and Clothes Shopping After Stage IV

Bald Ballerina and Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Maggie Kudirka’s #mybodytude post on her body image and clothing style changes after a metastatic breast cancer diagnosis. Read other posts in the mybodytude photo diary series.

 

Your attitude toward your body and how you express it may change after a breast cancer diagnosis and treatment. In this photo diary, Bald Ballerina Maggie Kudirka discusses how treatment for metastatic breast cancer changed her approach to clothes shopping and her overall “bodytude”.

Read Maggie’s photo diary and share your bodytude about breast cancer and body image on Instagram! Use #mybodytude and you’ll have the chance to win a Visa gift card!

Visit LBBC.ORG to learn more about this selfie contest and campaign.

1st picture

I’m Maggie, also known as the Bald Ballerina, diagnosed at age 23 with metastatic breast cancer. I was a thin but curvy dancer with a full bust – far from the small-breasted ideal ballerina shape. I often wished my breasts were much, much smaller. It would make fitting into costumes and finding clothes that fit much easier. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

2nd Picture

Before I was diagnosed, I wore bright, colorful clothes; there were very few neutrals in my closet. I don’t know if it was because I was more carefree or if it was because I had to wear black leotards in ballet class. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

3rd Picture Photo Credit Lucas Chilczuk

One of the challenges of being a dancer with a full bust is keeping your chest from becoming a distraction. You don’t want people watching your bust go up and down during a jumping combination or checking out your cleavage when you bend forward. So I had to find good, supportive bras and then find leotards that covered up straps. (Photo Credit: Lucas Chilczuk) #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

4th Picture

The morning after my double mastectomy was one of the happiest days of my life. The source of my cancer was gone and I finally had the body I always wanted – no reconstruction for me! My surgeon Dr Neil Friedman told me that was my silver lining. My smile tells the whole story. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

5th Picture. Photo Credit Andrew Holtz

Since I no longer needed a bra, I could wear any kind of leotard – spaghetti straps, low back, one shoulder, etc. I loved the freedom this offered me. Later that year, I worked with one of my favorite choreographers on a new piece. It was a relief that I did not need to worry about how supportive the costume would be. Photo credit Andrew Holtz #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

6th Picture

Cancer raised my awareness of the toxic chemicals that are ubiquitous in our environment, not only in our food and household items, but also in the fibers used to make our clothing. I now make an effort to purchase clothes made from organic, sustainable fibers that are undyed or dyed using non-toxic natural dyes. As a result, my color palette has become more muted and neutral. I appreciate the subtle shades of undyed natural fibers like wool, linen, and cotton and I like that no toxic chemicals were used to produce or dye the fibers. #mybodytude #breastcancer #bodyimage #metastaticbreastcancer #terminalbreastcancer

Share your bodytude after breast cancer on Instagram with #mybodytude! Follow these instructions for the chance to win a gift card for joining the campaign.

Learn more about body image, dating and relationships during our free program on Thursday, July 14, Love, Sex and Relationships: Body Acceptance After Diagnosis.


Maggie Kudirka, known on social media as the Bald Ballerina, was diagnosed with stage IV breast cancer in 2014 at age 23.  She was a member of the Joffrey Concert Group in New York City before the diagnosis put her dancing career on hold. Following surgery, Maggie went back in the studio to work on regaining her strength, stamina and technique. She hopes to return to dancing in New York City again. Learn more about Maggie on her website, baldballerina.org, and follow her on Instagram: @baldballerina.

The Bridge

Karyn Williams participated in Writing the Journey, our writing workshop series for people affected by breast cancer. “The Bridge” is a poem she wrote for the workshop.

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I crossed the bridge,
Into a new land.
The technicians said to me,
“We need to do this again,
Sorry.”
Stomach lurches,
Mouth goes dry,
Fear.

So, the Facts
And then, the Plan.
And off we go over the bridge,
Down the rabbit hole,
Into For Ever Land,
Cancerland.
Where nothing is the same.

Chemo, radiation,
medicines and machines,
Hair loss, fatigue,
Blood tests and scans,
Through the maze of alternatives.
Never sure,
No cure,
This is me
Now and for ever.
“I can’t go back to yesterday”, said Alice,
“Because I was a different person then.*

*from Alice in Wonderland, by Robert Louis Stevenson


Karyn Williams, 59, is a mother of four children and has two grandchildren (and another on the way). She lives in Australia with her loving husband. Karyn was diagnosed with early-stage breast cancer in 2008. In 2014, she learned she had metastatic breast cancer in her lungs, liver, brain and spine. Karyn has been pleased to find support through online communities like those offered through Living Beyond Breast Cancer.

My Humpty Dumpty Life: A Balance Between Love and Pain

For #MetsMonday, Hear My Voice Outreach Volunteer Ishiuan Hargrove shares an entry from her CaringBridge blog about a near death experience in late November. Her entry focuses on the tug of war between the pain she experiences from brain metastases, and wanting to do and see more with her loved ones (and all of you).

Journal#70 – I have a near-death experience

Dear Family and Friends,

I had a taste of what a near-death experience is like.  It felt very strange.  About twelve days ago, I woke up feeling like I was standing on top of a merry-go-round, not knowing what happened to my head, and had continuous vomiting.  I knew there was something wrong in my head since I had my third stereotactic radio-brain surgery at NYU in late October.  I’ve had metastatic brain tumors originating from my breast cancer since December last year.  Severe headaches have been part of my life for a year. I have exhausted all the available drugs as part of continuing care so I know very well that I am living on “borrowed time.”  This is the year where I have had four brain surgeries.11987183_10153571237599076_8631362120986273324_n

Sometimes when I am alone, I wonder if I would know when my moment comes and I also wonder, what will it feel like?  I ran through all kinds of scenarios in my head. I expect that I will know when that moment comes.

As it turns out, my multiple brain metastases had slowly gone through my brain, and there were lots of blood vessels, some quickly, some slowly, leaking blood into my brain.  I guess most people like me would slowly lose consciousness, rely heavily on good pain meds and slowly slip into a coma and die in a hospice settings.

My husband drove an hour to take me to Tampa General Hospital’s ER, to one of the best teams of neurosurgeons in Florida. Upon reviewing my scans, I was immediately admitted to the Neuro-ICU right away.  I really felt death close in on me; I didn’t want to continue to breathe. The pain was so great that it would be so much easier if I just stopped breathing.  I expected my “moment” and I really felt the weight of my cancer journey over these past nine years. All the surgeries piled up on top of each other.  It was as though this is my chance to take the exit. No more physical pain, I could rest and close my eyes forever. As we dropped our ten and twelve year-old boys to our friends and quickly said “good-bye”, suddenly, it hit me that I didn’t say my good-byes properly.  I thought I used up all this body could offer. Did I have any juice left?  Was I at the end of my life?  Wait, was I ready?  I might die peacefully in the arms of my beloved husband and this is more than many people could asked for.

The chief neurosurgeon Dr. Harry Van Loveren came by to see me the next day. He told me the hospital’s neuro-tumor board was debating on whether to operate on me. However, he told me he would operate for me.  He didn’t want to send me home to hospice, but he could not fix me permanently.  He asked me, what would I like to do?

I have been preparing to live a shorter life for the past couple years.  Suddenly I felt greedy. I used to pray to live to see my fortieth birthday, and I’ve already had two bonus years; but this is not enough!  I have a roundtrip ticket to Taiwan to see my mom in January 2016.  This year, she was also diagnosed with breast cancer at age of 62 and I have not seen her yet since her treatment started.  I want to use that ticket!

At that moment in the ER, I began to feel like Humpty Dumpty.  Perhaps I could be duct-taped temporarily, however long it could hold me together, before I finally hit the ground.  Who knows. I begged Dr. Van Loveren to take a chance on me, to just let me do some traveling and told him that I know I will eventually expire on the road, but that’s way better than slipping away peacefully in a home-hospice environment.  He said he saw a small candle left in me.

The pain I felt after the surgery was so great everywhere and I remembered asking myself again, why not take an easy exit now? It would be so much easier NOT to open my eyes.  Then I realized that I have worked so hard for the past 41 years to have this life, to establish my relationship with this world.  What a waste if I just quit now!  My heartache would be so much greater if those who I love would have to wake up every day knowing I am gone. They would have to deal with their emotions for many years, but I just need to endure this extra physical pain for a couple of weeks. I saw the look in my husband’s eyes; it was the kind of compassion a human has looking at an injured animal and wanting them to stop suffering. I was very pissed off! I do not want him to want my suffering to stop. I want him to want me to stick around to ask him to help me, to continue to interact with me, to raise our sons together, to experience life with me no matter how much pain there might be for both of us.  I want him to ask me to suffer for his sake and I want him to be as angry as hell as I am, not filled with grief to my end.  I don’t know if after I die I will be in a “better place?”  I have always believed we, with our fellow kindred-spirits, could create heaven here on this earth.  There is no other “better place” I would rather be.  I love this world I live in and I love all my friends and family.  I want to be part of the heaven that we create together.  So far I have only put 41 years of life into it, but I am greedy and I want to do more…..

So with the great pain of an aching heart, I decided to open my eyes and feel every single pain in my body, but I feel alive!  The pain reminds me this is my choice.  I know it was not my time, because I choose to burn my candle more, to aggravate more people, to voice my opinions more, to continue to build a heaven here on earth.  I felt very strong and positive energy coming toward me from all over the universe, from all different sources and I have felt so much LOVE from so many sources that were unfamiliar to me.  I think the LOVE and CARE from all other human being (many I do not even know) brought me back to life.  You made me want to continue to exist.  This was the most painful and most beautiful sensation I have ever experienced.  As I am now trying to pull words from my extremely muggy head,  I need to send this out to all of you who send me this energy. Human beings have this enormous potential to keep each other alive – believe it!  We are all in this world together. We can carry each other; we can be each other’s miracles.

I am going to live my Humpty Dumpty life for now, as long as it serves some purpose.  I know very well my cancer is a time bomb, my brain tissues are paper-thin, and from any slight touch my brain could hemorrhage to death.  My new life from this point needs to be a balance between LOVE and physical pain.

I thought my cancer had taken almost everything from me, but all of you who are reading my journals have put your support, love, heart and hope back into this broken body.  I thank each one of you for being part of my life. Let us continue to build heaven here on earth together!

Love and Merry Christmas,

Ishiuan


Ishiuan Hargrove, 42, is a medical physicist and CEO of her own consulting company, Hargrove Consulting Physics. Ishiuan developed a passion for cancer advocacy and research after her initial breast cancer diagnosis 12 years ago. She was diagnosed with metastatic breast cancer in 2013. Ishiuan lives in Florida with her husband and children. 

The Whole You: Lessons Learned After Moving from Nurse to Patient

Best-selling author Hollye Jacobs, RN, MS, MSW, blogs about three lessons she learned after she was diagnosed with breast cancer. Join us for our Annual Fall Conference, part of Wellness Weekend in Denver, CO this September 18-20 to meet Ms. Jacobs, to hear her speak and get a free copy of The Silver Lining Companion Guide in your conference goodie bag at registration for the event. 

As a healthy, happy, vegan-eating, marathon-running, 39-year-old young mother with absolutely no family history of breast cancer, being diagnosed with the disease in 2010 literally shattered my world. As a health care professional, I very quickly moved from the side of the hospital bed into the hospital bed.  This transition from nurse to patient taught me profound life lessons.

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Lesson #1: Honor the feelings and let them out.

Prior to my experience with breast cancer, I was a grin-and-bear it kind of girl who was reluctant to share any feeling other than joy. However, once ‘Roid Rage (the intense feelings of anger brought on by pre-chemotherapy steroids) and Chemo-Sobby (tears at the drop of a hat brought on by the chemotherapy flowing through my veins), and the Freight Train of Fatigue (courtesy of the rads of radiation beamed into my body) entered my life, I had no choice but to let all of my feelings out. I was too exhausted to muster the energy to make them look “pretty.” And you know what? Expressing feelings, all feelings, happens to feel good. Really good. Though I no longer have ‘Roid Rage, Chemo-Sobby or the Freight Train of Fatigue (thank goodness!), I continue to openly express my feelings. And it still feels good! No, actually, it feels great! Continue reading

The Whole You: Meditation, Yoga and Breast Cancer

In this post for our Wellness Weekend series, The Whole You, Ayanna Kalasunas writes about how meditation and yoga helped her after she learned she had metastatic breast cancer. Understand how cancer impacts you physically, emotionally and spiritually during Wellness Weekend, taking place September 18-20 in Denver, CO.

Let’s face it – hearing “you have cancer” is one of the scariest moments of anyone’s life.  A metastatic breast cancer diagnosis two and a half years ago on the day I was set to start chemo was downright earth-shattering.  I, like many others, asked myself “how the hell am I supposed to handle this?” Having battled depression and anxiety in the past, I was truly concerned about the coping mechanisms I would need. I felt lost, angry, afraid and hopeless.

Then I thought about my mother. She too had been diagnosed metastatic after a stage II battle seven years earlier. She maintained a zest for life and continued to be the life of the party despite various bouts of chemo, radiation and multiple surgeries. She had cancer and I was aware of that but she was so much more than her disease.  My now husband once commented about her saying “I honestly forget that she is sick. Not in a bad way…she is just so fun and happy all the time.” Thinking about this reminded me that I could do it, too.

I was also very lucky to have a few close friends that used meditation and yoga as part of their regular routines. Part of their support as caregivers was offering information and resources regarding meditation, mindfulness, acupuncture and other complimentary therapies to my medical treatments, which I continue to pick up along this journey. Each one has grounded me and brought me to a life that is filled with hope, positive thinking and empowerment.

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I did not morph into this person overnight. I read a few articles here and there, followed some inspiring people on social media, went to a yoga class with a friend here and there and spent a few Sundays super-souling on my sofa with a cup of coffee. I tried some mediation challenges and apps and slowly have found a sense of power in each of these moments.  I learned that I am in fact in complete control. Cancer is in my body so yes, it is real, but I am not my circumstances. Continue reading