Wendy M. is a 14-year mesothelioma cancer survivor. Her mesothelioma case is very unique, as it presented itself in a reverse pattern. Wendy is an active member of our mesothelioma community on Facebook and was willing to share her story with others through our Survivor Insight Series. Her last name is being withheld over privacy concerns.
What were the events that led up to your diagnosis?
I was working in a nursing home as a paramedic/aid. I had just lifted a very large patient when I noticed my left arm felt tight and tingly. A co-worker noticed how large and mottled it looked. My left arm was nearly twice the size of my right arm. I was rushed to the ER by ambulance for a potential arm/shoulder injury and shock.
How old were you when you were diagnosed?
I was 28 years old.
How was your diagnostic process?
The entire process was a 30 day event at The Cleveland Clinic. The swollen arm proved to be as a result from a 3″ blood clot in my subclavian vein, just below the collar bone. This clot was in danger of shifting and entering my heart, which would kill me instantly. The Cleveland Clinic vascular unit had to drill through the clot and dissolve the clot, with fingers crossed that it worked on such a large portion. I spent nearly two weeks in Cleveland with a mistaken diagnosis. I returned a week later with similar swelling, which CAT scans proved my entire lymph system was considered tumors, cancerous tumors. Another two week stay ended in a removed lymph node which was sent to Boston and England for a diagnosis. My CA-125 blood test was well over 500 (off the charts). I was tested for every form of cancer under the sun, with no diagnosis. I was later informed it was Mesothelioma after my release, since they had no valid reason to keep me.
Being so young with mesothelioma, how long did it take for you to get accurately diagnosed?
My mother demanded a second opinion. We had my lymph node slides and blocks sent to The James Cancer Hospital in Columbus, Ohio for a review. Their findings came back as Mesothelioma, which they were hoping was a huge mistake due to my age and the advanced stages of the cancer. All in all, this was a three month journey of a correct diagnosis.
What were your biggest questions after being diagnosed?
I don’t know if I had many questions. I was shell shocked form the diagnosis and the grim prognosis. I was immediately given 12-18 months to live WITH chemo to make my death less painful. Once you hear this kind of news, everything else just fades away because your brain is too traumatized to absorb anything else.
Was your mesothelioma caused by asbestos? If so, can you remember coming in contact with asbestos?
Yes, my cancer was 100% asbestos related. My first exposure to asbestos was at birth. My father was a career mechanic. The grit on his uniform (clothing) was asbestos dust from brake pads and clutches.
What treatment options were you offered and what did you choose to do?
I was only offered one form of treatment. It was an experiment. The Cleveland Clinic offered me free chemo in exchange for the rights to my medical records for research between them and The Boston Medical Journal. I declined. I went to The James Cancer Hospital at OSU in Columbus, Ohio. The used the same form of treatment as suggested in Cleveland. I was given Taxol and Carboplatin.
Did you travel to a specialty center or surgeon?
How has your life been since being diagnosed?
My life has been completely turned around, and at times .. Upside down. My husband left me and our children half way through my treatments. He married immediately, which made me feel like he found a new mother for our daughters. I am a medical professional, so I had to dive in feet first and be aggressive in my own survival. I researched everything I could get my hands on, regarding my body on a cellular level. I was also blessed by my oncologist to give me the OK to try alternative therapies along with my conventional treatments, all the while keeping a medical journal of my experimental findings. I was able to find true peace with my spirituality. I finally understood how I was able to remain being “me” and still know in my heart that I was a child of God. I didn’t have to be a certain way that society expects you to “be” to consider myself a Christian. I had a better relationship with my family and friends, and with this, a better peace of mind about life as we know it on this Earth. I have decided to step outside of my comfort zone and be a Mesothelioma advocate and support person, even though the potential is there to emotionally re-live my fight.
You are currently writing a book “Mesothelioma and Me” why did you decide to write it?
My oncologist was the push behind this book writing idea. It has taken me several years to actually consider it. And now that it nears its completion, I am glad. I had many times of walking away from the keyboard to cry out what I had been suppressing all of these years. This book is to educate and inspire those going through the same fight I endured. Education is key!
Can you tell us a little bit about the book?
This book is a timeline of my cancer experience. It also has medical information as well as legal issues that I hope to open a few eyes with. Mesothelioma has been, by far, the most educational experience of my lifetime.
What message would you like to send to the mesothelioma community? (Newly diagnosed or survivors?)
Even though life is terminal, never quit believing and trying! That statement .. Life is Terminal I had to look in the mirror and accept that entire sentence. I was not born with an expiration date on my body, and being handed news of your demise is the worst count down you could ever keep a calendar to. If your brain and your body tells you something completely opposite of what a man or woman in a white coat has handed you, listen to your heart and fight, debate, cry, pray, share, love and mostly live this life with what your gut is telling you to do! You are NEVER alone in this battle. And if you think you are look in that mirror. Look into your own eyes and see that God has given you a special gift that no one can ever take from you your spirit and soul. And if you are dealing with grim news, or beat down today and you fear exhausting you family or friends (once again) with you insecurities .. Please know that I will do whatever I can to be your cheerleader in your corner. I will talk with you until I am blue in the face to get you where you need to be mentally and emotionally, only if it means you have 10 minutes of feeling peace and confidence in your heart!
We would like to thank Wendy for sharing her personal story with us in our Survivor Insight Series. She had a very unique situation that is inspiring to others. Are you interested in sharing your story with us? Reach out to us at firstname.lastname@example.org.