Incurable/Terminal Cancer

Wendy Kozel has been living with breast cancer for the last 12 years.  The last six of those years she has been living with Incurable Metastatic Breast Cancer. She has set a goal for life and advocates research for Metastatic Cancer. Just recently, she has returned from lobbying for legislature on Capitol Hill to raise more awareness of this disease.

She joined over 250 metastatic breast cancer survivors to participate in the Stage IV Stampede supporting Metavivor.org.  This organization gives 100% of its donations to Metastatic Cancer research to ensure we see a decrease in the fatality rate of 115 lives lost each day to this disease.

Even though patients have health insurance and great health insurance, that doesn’t mean they are getting the care the need to continue living.  Patients diagnosed with this disease are forced to pay out of pocket maximums within the first month of the year due to the cost of care.

Trials are difficult to find let alone qualify for,  due to lack of insurance coverage and specified patient profiles.  This means each year most metastatic breast cancer patients pay in the 10’s of thousands of dollars out of pocket to attempt to keep them alive.  This cost increases in the double-digit percentage range each year.  Some have no choice but to cease treatment and pass on.

Rarely does an outsider get to watch in live action the bravery and singularly pointed, dauntless, fortitude of human life bent on living with fullness, gratitude, and light. I only know Wendy Kozel from a distance, but I am inspired by her all the same as she advocates and navigates life living with Metastatic Breast Cancer. Wendy brightens a room just by walking in and rarely leaves it without depositing inspiration as if a blanket over the shoulders of all those whom she meets.

Wendy Kozel
Peer to Peer Support Group Leader
Greater Cleveland Area
440.787.4349
wendykozel@gmail.com

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Read the Wendy Kozel interview with Lacuna Loft below…

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Lacuna Loft Interview with Wendy Kozel – June 2016

Lacuna Loft:
When were you diagnosed and what is your diagnosis?
Wendy:

I late March of 2004 I was putting away clean socks in a drawer and bumped up against something hard and painful in my right breast. My husband of then 11yrs had been dealing with symptoms of blood in his stools and was trying to get a colonoscopy approval at the age of 39. I had just been to my yearly gynecologist visit 5 weeks prior with everything perfectly fine. I then tried to feel what this was and it appeared to be a large golf ball sized mass. Immediate panic ensued and I called my husband. I was 35 years old with a 5 yr. old son. After testing and many biopsy procedures, I was diagnosed with Stage IIIB IDC Her+2 ER+ Pr+ breast cancer. Tumors of

Tumors of almost 9cm total were hammered with 8 rounds of chemo, a bilateral mastectomy with TRAM Flap reconstruction, 25 sessions of rads and 5 years of Tamoxifen. While that was going on my husband was diagnosed within days of my diagnosis with Stage III B colonoscopy cancer. He underwent surgery to remove 18″ of his intestine and rectum with 12 sessions of chemo post op.

Five years after my initial dx in late August 2010 I was throwing the football with our, then, 12 yr. old son and had intense shoulder pain. After a visit to the Orthopedic Dr. he told me that I needed to see an Orthopedic Oncologist as I had what appeared to be cancer throughout my entire right humerus.

After the bone biopsy, I was then diagnosed with Stage IV Metastatic breast cancer and given a grim outlook that I would never be cured and die from this. I underwent 15 rad sessions and was “clean” until I reluctantly agreed to a PET scan in February 2014 which detailed progression to the lungs and chest lymph nodes. My outlook became even more grim with odds that I would only have 6 months of quality life left. Our son was 14. Chemo, immunotherapy, scans ensued when further progression was discovered to my axilla.

Fast forward to June 2016 and I am STABLE! Our son has just graduated from high school and off to The University of Dayton in August to pursue a degree in mechanical engineering. My husband has been clean since 2004 and is now treated as a regular 50 yrs. old!

LL:
How did you feel when you were first diagnosed (physically, mentally, emotionally)?
W:
At the first diagnosis I felt sooo defeated. “I cannot go through chemo, lose my hair and throw up all the time! I am way too young to have breast cancer!!!” Then my husband’s diagnosis came just days later and all I could think of was we cannot let our son be an orphan.

LL:
How did you choose to share your diagnosis with your children?
W:
In the beginning we just told our son that we were sick. Dad would have a big boo boo and mom would be taking stuff that would make her bald. Then vice versa. He did not really know the impact of the disease until my Metastatic diagnosis and then it sunk into him. He does not remember much from the first time or his dad. The impact of the teenage years is immense. Eventually he would be diagnosed with an eating disorder at age 16 which was robbing him of puberty, thriving and life. I got him back on track and he sees me just pushing through and that has taught him that no matter what you accept and move on.

LL:
Who/what/where did you turn to for support?
W:
I first turned to support through what I considered friends…unfortunately most of us have been torn apart by reality of the relationships we “have”. My parents were so negative, judgmental, and toxic I had to estrange myself eventually after I dug deep internally and pulled myself out of alcoholism to realize they were my triggers. My social worker was a great help (I never opened up to professional help before) as were my oncology nurses.
New spirits showed up in my life as I became more mindful and I began advocacy work in both caregiving and patient peer to peer support. I am also a huge advocate for metastatic breast cancer spreading awareness, education and helping to raise research dollars that REALLY GO TO RESEARCH!

LL:
What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
W:
Doctors and medical staff are very cryptic and vague in talking with metastatic patients. I wish they would engage more into the entire patient not just medical findings (if they can’t cure it they do not know it entirely). They too could learn something. I have opened up my medical team to many areas to investigate that they may not have even considered. Listen to us…

LL:

Any words of wisdom to other young adult cancer survivor moms/parents out there?
W:
You must accept the circumstances put forth and dig deep to find solutions that are fluid as life is full of challenges, surprises, and small victories. I experienced much judgement from those outside our relationship which was extremely hurtful but you must shut the noise out and focus on what it is important to you. Taking care of yourself first is most important, as if you are not ok you cannot help anyone else.

LL:
Could you describe how your husband’s cancer affected your own cancer experience?
W:
The really surprising result of his bout with cancer was his reaction to me being terminal. Not at all what you would think in fact I am more alone than ever in our relationship and have created my own life and supportive relationships to help me pull through each moment. My mantra of 2015 has given me so much strength…”Expectations breed limitations.”

LL:
Who was your most supportive caregiver during your cancer experience?
W:
I have a small circle of trusted support each bringing different gifts of strength. All are new in my life and from many different aspects of my being. Be present always as bright stars fall from the sky and you may not even be aware of the treasurers that await you.

LL:
What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?
W:
During my first diagnosis work defined me so I continued to be functional (yes working remotely while the poison was going through my veins). Our son was another welcome distraction but my husband’s cancer was a very different distraction.

LL:
Could you describe how sharing your story has affected your journey with Cancer?
W:
My terminal diagnosis has brought fitness, nutrition, peer to peer support, and metastatic breast cancer awareness and education. I am much more mindful and truly try to be present as I have always been a person checking off lists and rushing through life. I am also on SSDI which has proven to be a great blessing.

LL:
Where are you now in your journey with Cancer?
W:
Currently, I am stable with treatment every 3 weeks, scans 3-4 months while celebrating my 6th year living with stage IV metastatic breast cancer. Joyfully Celebrating a milestone, I thought I would never see-my son graduated and off to college!

LL:
What do you like to do in your spare time?
W:
What spare time? I am busier now than I have EVER been! I enjoy taking some time for myself through exercise, turning inward and being present through many different and often new activities.

LL:
Could you talk a bit about your work advocating for metastatic Breast Cancer survivors? (How did you get involved? How does it affect your own feelings about your cancer experience?)
W:
Advocacy brings me an abundance of fulfillment and joy, I have never thought or muttered the words “WHY ME?”. Why not me? If I have been challenged with this; let me turn this into something that gives back!!!

LL:
What “words of wisdom” and/or advice would you give any young adult facing Cancer?
W:
There is no “I can’t because…” Be present, mindful and most of all practice gratitude. There is always something to be grateful in the day and it is UNFAIR TO COMPARE!”

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