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Blog Polycythemia Vera

She Is Not Just Surviving, She Is Thriving Deb’s Journey With PV & Breast Cancer

PRESS PLAY >> THE ALTERS (I WILL FEAR NO MORE)

 

After writing several blogs, articles, and posts about Ed's Polycythemia Vera journey, I was contacted by a wonderful woman who read our blog and offered to tell her story. 

I have to say I was in shock! Humbled beyond belief. I have advocated for over a year now, and finally, I feel like it is making a difference. Someone wants to share their story.

wow

 

Not just surviving with PV & Breast Cancer

This is a Story of Thriving

This is Deb's Journey

 

fighting

Deb Wesloh's Bio

Deb Wesloh lives in Bulverde Texas.  She is married and has three boys.  She retired as an Army Officer in 2005 and now works as a government civilian at an organization that assists Soldiers separating from the Army get their Veterans Affairs claims adjudicated appropriately.

She holds Bachelor's degrees in Biology and Health and Master Degrees in Health Informatics and Health System Science.  She was an adjunct professor at St. Phillips College from 2005-2008, instructing medical terminology.

Deb is an almost four-year breast cancer survivor. She was diagnosed with early-stage invasive ductal carcinoma and underwent treatment in 2016 and 2017 to include chemotherapy and a bilateral mastectomy.  She was also diagnosed with a rare blood cancer called polycythemia vera (PV) that same year.

Although the breast cancer diagnosis was not a complete surprise - her mom had it twice – the PV was.  She, at the time of diagnosis, was a long-distance runner, was in excellent physical shape, and did not have any symptoms except elevated blood levels.

Even though PV can't be cured but she is undergoing treatment that has so far proved to be moderately effective. It has made her numerous symptoms manageable and has improved her overall quality of life.

She supports multiple Veteran and cancer organizations as a participant, volunteer, advocates, and/or mentors to include; Warrior Cry Music Project, Team Red, White and Blue (RWB), Leukemia and Lymphoma Society, Curtain Up Cancer Foundation, Gemini Ink, Casting for Recovery, Sandra’s Hope Foundation, After Breast Cancer Diagnosis (ABCD) and Soldiers Songs and Voices.

As a writer, she has participated in several storytelling productions through Curtain Up Foundation and Gemini Ink. Also, she had a cancer-related short story published in a literary journal called High Noon (https://tuhighnoon.com/2019/06/14/the-journey/).

She is a regular contributor to the online journal Blood-Cancer.com through an organization called Health Union.  She has had over a dozen cancer-related stories published (https://blood-cancer.com/author/dbwes62/).  Besides, she has co-written a few songs, including one called You Can Go about moving forward following a cancer diagnosis. Her goal is to continue to use writing as a means to provide awareness for both breast cancer and polycythemia vera.

Other interests include race-walking, biking, reading, playing guitar, photography, and spending time with her family.

Because of two cancers impacting her life, she knows her future is uncertain.  Therefore, she tries to make each day count and is determined not to let this all defeat her or diminish her joy of life.

cancer

Deb Reveals More About Herself, Her Life, Her Journey

In Her Own Words

One of my favorite quotes is “life happens to us when we’re busy making plans” by Allen Saunders. Life has a way of surprising you, as things do not always turn out the way you expect them.

If someone had asked me to tell them about myself a few years ago, I would have probably started with my family.  I would have shared stories about my oldest son and his teenage escapades or perhaps funny carpool chronicles as my role as a glorified chauffeur to my two younger sons.

Next, I would have spent some time relaying the details of my job. Although I had retired as an Army Officer, I had recently started a second career in a government civilian job. I was your typical workaholic, spending way too many hours at the office. I liked managing the large organization; an operation that I helped build from nothing.

And…if I had time, I probably would have talked about running.  If I did not get the “deer in the headlight” look, I would have continued discussing runs, past injuries, and telling racing “war stories.” It would have been evident that I truly enjoyed it.

I loved my life!

That was four years ago…before the cancers… It is funny how that one little statement, “you have cancer” can change your life forever.

2016 was a rough year for me. First came the diagnosis of polycythemia vera or PV, a rare and incurable blood cancer.  No sooner than I adjusted to this shattering blow, I was dealt another setback with the diagnosis of breast cancer a couple months later.

I was in shock.  Two cancers in one year? Seriously? I thought I was healthy. I ran faithfully every day, never smoked, rarely drank, and apart from a slight candy habit, ate nutritiously my whole life. How could I wind up with not one, but two types of cancer?

During a routine physical, my primary doctor noticed that my blood levels were all elevated and referred me to a hematologist.  Multiple tests, including a bone marrow biopsy and a positive Janus kinase (JAK2) test result, confirmed that I had a chronic blood cancer called polycythemia vera. 

I learned that a JAK2 gene malfunction causes one’s bone marrow to overproduce red blood cells. PV not only causes severe fatigue, headaches, spleen enlargement, and itching, it significantly increases one's risk of heart attack, stroke, or blood clot. PV can also progress into cancers that are more serious like myelofibrosis or leukemia.

The breast cancer diagnosis was not a complete surprise as my mom had it two times.  I had been vigilant with screening. Therefore, as soon as I felt a lump, I had it immediately checked.  A biopsy confirmed my fears and I was diagnosed with Stage IIA invasive ductal carcinoma.  Because the tumor was aggressive, I opted to undergo chemotherapy and a bilateral mastectomy.  I watched my mom struggle through treatment twice, so I wanted to do everything I could to ensure "Cancer" did not return…ever.

The remainder of 2016 and a good portion of 2017 was a continuous blur of chemotherapy, surgeries, extensive lab work, many ER visits, and procedures.  

After I finished the breast cancer treatments, the focus then moved to the polycythemia vera. Although PV cannot be cured, it can be managed with treatment.  Initially, my daily regiment was just baby aspirin but with my platelets dangerously high, we had to look at other treatment options.  There were a few medications available; however, Jakafi seemed like the best fit.  I started taking it in 2018 and have had relatively good success.  My blood levels are where they should be, my spleen is back to normal size and it has helped with some of the symptoms. 

I also embarked on a stringent and healthy lifestyle.  My logic was, unlike my cancers, it was something I could control.  I started a nutritious Mediterranean diet and sadly eliminated my favorite vice, candy. I also attempt to exercise every day, even when I do not feel like it.

Despite the two cancers, my overall prognosis is good. Most of the time I feel okay. However, there are still days this former runner who used to get up before the crack of dawn to run 5 miles struggles just to get out of bed.

Once I started to feel more like my old self, I started looking around me wondering where I go from here.  I wanted to go back to my normal life, to the way things were before cancer, but it was not possible.  Not only had cancer provided a completely different perspective on life, everything around me had changed too.  

My kids who depended on me to get them back and forth to school and activities now could drive themselves.  They were involved with homework, extra-curricular activities, and their friends.  I was lucky if I saw them at all.

The job…well they survived without me for the better part of a year. Now I have become more of a meeting-attending figurehead than anything.  Although I still enjoy it, it is not the same as it was previously.

And the running, my beloved running. The fatigue from the PV often saps my energy. The chemo caused irreversible damage leaving me with chronic foot pain. The passion I once had for running was killed along with the cancer cells. 

In my search to find a “new normal,” I began to get involved with a variety of cancer-related organizations as a mentor, volunteer, and participant. Although I had an incredible support network of family, friends, and co-workers throughout my cancer journey, they could only sympathize. It was therapeutic to be around others with cancer, as they understood what it was like to have your life yanked out from under you. I decided that I wanted to do something to help others affected by cancer and try to make a difference.  I just was not sure what that something was yet.  Therefore, I moved forward in my quest to find a new niche.

I was selected to be a runway model at a breast cancer benefit – stepping way out of my comfort zone to strut my stuff on the runway.  A few months later, I attended a women’s breast cancer fly-fishing retreat and realized how much peace came from fishing.

Since I could no longer run, I started looking for alternative physical activities.  I tried biking…and yoga…and walking with moderate success. However, biking was a logistical challenge, yoga classes were costly, and walking does not quite produce that “runner’s high.”

Music has always been an integral part of my life. Before the cancers, I was instructing guitar to Soldiers at the Warrior Transition Battalion at Brooke Army Medical Center in San Antonio.  So, after a year hiatus, I went back.  I also became involved in a song-writing group called Soldiers Songs and Voices.  Finally, since I always liked to sing and I was not getting any younger, I signed up for voice lessons.

In 2018, I attended a cancer-writing workshop called Voices of Recovery, a joint effort between the Curtain Up Cancer Foundation and Gemini Ink in San Antonio. They paired me with a professional writer, and she helped me craft my story.  Up until that time, I had kept everything private in a journal and had not discussed my arduous challenges with anyone.   Despite my initial apprehension of sharing something so personal in front of an audience, I found that telling my story to others was beneficial…and kind of a rush too.

I continued writing personal essays and short stories about my experiences.

On a whim, I uploaded a story called I Wore Red to Blood-Cancer.com. I heard back from one of the publishers shortly after my submission asking if I would like to be a regular contributor. I immediately said yes.  When the first story was published, seeing my words in print was thrilling. Now, a year later I have had over a dozen short cancer stories, most with a touch of humor, published on the website.  I am hopeful that my stories are assisting others to deal with cancer and encouraging them to push ahead despite their own cancer struggles.

My writing is all over the place now.  I continue to compose stories for Blood-Cancer.com.  I also conduct research and write technical articles related to polycythemia vera for an organization called PV Reporter. As a patient advocate for Rare Across America, I have had the opportunity to tell my cancer story and discuss issues affecting the rare disease community with Congressmen and Senators.  I even co-wrote a few songs. One, in particular, called You Can Go, is a peppy song about not letting cancer slow you down.  

So…who am I now? Well…I am a cancer survivor!  However, I am also a model, a bicyclist, a walker, a yogi, a guitar instructor, a storyteller, a fly fisherman, a published author, a singer, songwriter, a volunteer, and an advocate for multiple Veteran and cancer organizations. 

I always lived life to the fullest before the cancers, but now even more so.  Like any other cancer survivor, I realize that life is finite, that I may not be around if I planned. Therefore, I live "large", take risks, do crazy and unusual things. I try to make each day count. I am determined not to let this all defeat me or diminish my joy of life!

Despite everything life has thrown at me these past few years, I am back to loving it. I may have not planned to be where I am but am so blessed that the vicissitudes of life lead me down this path.

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Deb, we are thankful for you and your bravery. We are humbled and grateful that you are sharing YOUR story with us and our readers, followers, and subscribers. We are praying for you and wish you the best. PLEASE keep us abreast as to how you are and we would love to keep everyone updated on your journey. You are a shining light in our world! A warrior and a survivor. Another true hero.

 

If you would like to share any of your stories with us or follow Deb's progress, please do not hesitate to reach out to us via comments or  email colorfulchaosthejourney@yahoo.com

 

nevergiveup

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