Sarita “JOY” Jordan – {I AM Living}

Today’s #metsmonday story is from Sarita Jordan.  I believe Sarita is part cancer celebrity because she has a way of bringing joy and positivity to every conversation.  I met Sarita in Philadelphia, during our training for the Living Beyond Breast Cancer Outreach team.  She is a walking encyclopedia when it comes to helping others navigate through their metastatic diagnosis.   Sarita grabs life by the hands and lives it well…….she is a inspiration and encouragement to all.  Enjoy her story.

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 Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?

My life was great before a metastatic breast cancer diagnosis. I was diagnosed with Stage I breast cancer in 2005 at the age of 35. I had a lump by the right nipple that was suspicious to me. I wasn’t old enough for a mammogram, so I went to my ob/gyn to inquire about the area. I was then referred to a breast surgeon who ordered an ultrasound and then a biopsy was suggested. There were 3 areas of concern at this point. Well, I was working as a supervisor in the Department of Public Welfare. Had just completed a paralegal certification program in May of 2005 and was traveling to Egypt with my daughters in August 2005. I held off the biopsy until I returned from the my trip. When I returned, I had the biopsy in Sept, and was diagnosed with breast cancer, shortly thereafter. I had a lumpectomy , chemotherapy (A/C) and 30 rounds of radiation. I was told to start Tamoxifen and within a couple months was having major complications. After being rushed to hospital with a severe hemorrhage, I was told to discontinue this drug, even though my cancer was estrogen receptor positive. A few weeks later, I was still feeling sick, so I went back to doctor and found out I was with child. I was told I should not continue the pregnancy. Against doctor’s orders, I gave birth to a healthy baby boy. Since I was able to retire from my job, I spent the next 8 years doing advocacy work and being a volunteer at various organizations to assist other women.

In 2012, I returned to work as a patient navigator at my local hospital . It was the ideal job. Helping the cancer patients address their barriers and empowering them to navigate their own healthcare made me proud. I had made a diet and exercise change and was even running half marathons. Within 6 months, I began to have a headache and achy bones. When to ER several times to address my concerns, and they sent me away stating I was exercising too much. Well, after having stroke symptoms and returning to ER, I was finally admitted and tests were ran. A MRI confirmed I had a tumor in my skull base. Unfortunately, the cancer was back. Metastasis to my skull, bones, right axilla, liver and ovaries. However, ovaries have been removed.

 What is your official diagnosis.  Tell us about your current treatment .

Although , I am Stage IV . I am not recorded as Stage IV for statistical purposes because I was not Stage IV at onset.

The proper diagnosis would read, Stage 1 breast cancer, invasive ductal carcinoma, with recurrent metastatic disease to bones and liver. Er+, PR-, Her 2 -. Stage IV is basically what that’s saying.

After the Stage IV diagnosis, which was on my youngest son’s birthday, I was switched to a different healthcare system. My new employer became my treating hospital. I had to have radiation to my skull; targeted through each ear, lower skull base and upper spine. I also was taking Femara. I was very weak and sick during this healing process. Then I began to have liver progression , I was deteriorating quickly. I had to have a port inserted. I had to have a blood transfusion and I started Paclitaxel. Femara was discontinued immediately. I was also getting a shot monthly for my bones, Xgeva and Zometa. That was discontinued when I developed ONJ Osteonecrosis of the jawbone. After 26 rounds of Taxol, I began to have liver progression ,yet again, Taxol was discontinued. I am now on an oral chemo called Capecitabine (Xeloda). I take 4 pills in the am and 4 pills 12 hours later for 7days. A total of 4000mg. Then, I have a break for 7 days, then repeat the process. This drug is very expensive and I was at risk for not being to afford it. The pharmaceutical rep found a grant for me that covers my 500 per month, copay. I have limited health coverage which has another set of challenges. I also suffer form several side effects; fatigue, high blood pressure, neuropathy, dark hands and feets, nausea, headaches, nail separating from nail bed, etc.

Despite these factors, I still continue to thrive. I even participated in a LIVESTRONG program while going through IV chemo. This was actually working out in the gym 2 days a week for 12 weeks. I am a fighter! I’m determined to fight back! I will never give up!

How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?

Cancer has changed my life in some really positive, uplifting and inspiring ways. As a single mom, I sacrificed a lot for myself to make sure the children had all their needs met. After, the cancer journey and attending therapy with my children , one therapist asked me, what about me? What do I do for myself to stay sane and healthy as possible? At that moment, I learned the missing component was to show myself love. From buying nice bubble bath, to brand new underwear and lingerie. If I wanted to go for a walk, I went. If I want to eat ice cream, I do.  I stopped putting myself last. Although, I still remain a constant work in progress.

How do you live your best life now, thriving with a metastatic diagnosis?

I live my best life now by choosing to be happy and smiling through the pain. I am grateful for life. I choose to live the rest of my days in a positive manner.

What makes you most happy, and where do you find the most joy? Is this different than BC (before cancer)?

I am most happy when I realize I woke up today. I believe that I was given another chance to live. Life is great. I learned to be grateful for all that I do have. I could have succombed to this disease a long time ago, but I didn’t. I know I am here for a reason. Maybe that reason is to share with other women and help them through their journey. Maybe that reason is to be alive when they find a cure for this horrible disease. I do get up everyday and keep moving. Movement is medicine.

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People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing someone has said to you?

The worst thing is when they say nothing. When your friends stare at you like they see a ghost. When they assume I am ok, just because I look ok. Looks don’t have anything to do with it. I guess, when people know better, they do better, So, I keep myself surrounded by other breast cancer survivors, thrivers, metavivors, etc. I feel only they understand what living with this deadly disease is really about. You know, the Not SO Pretty In Pink!

What did or do you find most helpful for those wanting to encourage or help you?

The most helpful to me, is when my friends reach out to me to assist. They call me and plan a lunch date or invite me to an event. Call and ask if they can take the children for the day . I am very independent so asking for help is very difficult. So, I am learning that each day, but it’s still very difficult. I also appreciate a random phone call to check and see how I am feeling or a card or a note. Those things make me smile because I know their actions are coming from the heart.

Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?

Not so much overlooked, but don’t include us with the early stager’s. I don’t think its intentional . I think it’s the fear of the unknown. so, I think the fact that we are speaking about it more and boldly, it will began to educate everyone.

Social media blasts , blogs , videos are all fantastic ways to talk about metastatic breast cancer.

What do you want people to know about YOU and your life living with this disease?

I am LIVING!!!!! that’s simply it

 

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Do you think our cure is near? Or what one scientific advancement in the treatment of MBC do you find most encouraging.

I try not to wrap my head around that , so much, because it makes me feel discouraged. So, I would like to just remain hopeful. There are some many types of cancer, it has a mind of its own. All the money being dispersed for research, it just makes me wonder what are they actually researching?!

What is one “action” point everyone could do TODAY to promote awareness of MBC.

Stage IV needs more. Stage IV needs a cure. Stage IV lives matter!  We are running out of time!

Do you have a favorite poem, song, quote, or work of art that you would like to share with us.

 I have a page on facebook that I use to educate my community and I use it to be transparent about my journey. There are so many misconceptions and myths about this disease. I just show that it’s NOT all about the Pink. I’m not anti-pink, I just feel that they need to know what going on behind the pink fluff. Knowledge is power!

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Thanks Sarita for sharing your journey with us.

If you are living with metastatic breast cancer and want to share your story, please contact me using the form below. I will send you all of the details.

Until next week!!

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4 comments

  1. Sarita you are truly an amazing woman and so positive and full of life I admire you and your strength I’m proud to know you and I’m praying for you and your family love you!

    Like

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