How my story begins: While slowly recovering from sinus surgery, I had a mysterious attack of what seemed to be pleurisy. I was entrenched in a Leadership for Life project that was all consuming. My health was beginning to fail and my energy was waning but I pushed forward with long hours at work.
My internist ordered a chest x-ray and what we discovered was not pleurisy but that I had severe, metastatic cancer. A lung biopsy was performed and for some reason my entire body revolted within 24 hours, leaving me with a swollen labia and extreme vaginal pain. That was the beginning of determining my actual diagnosis of stage IVB cervical/vaginal cancer.
Life before my diagnosis: Single, professional, mother & grandmother. Recognized throughout the Pacific Northwest as a Servant Leader and top performer in my professional pursuits. When not working or spending time with my family and friends I enjoy the arts at large, volunteer in the wine industry and garden just to name a few activities. On a serious level I’m a life-long learner along with being an avid reader and writer.
How I felt after diagnosis: Anyway I looked at the diagnosis, I was in complete and utter shock. I knew I had been exhausted for some time but I somehow confused the stress of life, personal grief and demanding work, to simply be a poor sinus condition. After all, I had gone through a similar run down 25 years prior. My ENT even said I’d feel much better after the sinus surgery. Surely, that all made sense. Yet, the mystery pleurisy was not so.
My lungs were filled with metastatic cancer. No wonder my breath was compromised! Even before the lung biopsy results were back in hand, I learned about the severe cervical/vaginal cancer inflammation. During the painful manual exam, I could hear cancer matter splashing onto the floor! My heart fell and the look on my oncologist's face was more than enough to confirm my worst imagination. Why had I not been more aware of the physical state of my own intimate being? I was shaken to the core.
Telling my family and friends: Thankfully, my Internist had just attended a seminar on dealing with delivering bad outcomes to patients and families. I cannot thank her enough for handling my news in the most direct, visual, personal and sensitive way. Additionally, she directed me to call my four close contacts before I even left the clinic that day. First of all, fresh air helped. Next, I found a quiet spot in the lobby and one by one began the calls as my tears fell. This was brutal but key to my needs and ultimately learning how to really accept the support before I could even manage my own thoughts.
My treatment: I could go into the vital details of my treatments but this format doesn’t seem to need that level of detail. Of note: I was unable to undergo any type of surgery due to the full blown metastasis and remain complete with all organs intact.
What happened so quickly was the implant of the perma-port that I was told I would need for the remainder of my life to ease my treatments. Next, I began what was to be a very serious protocol of heavy dose chemotherapy every three weeks if my body would hold up. The first doses left me feeling like I was being eaten from the inside out and the second round landed me in emergency with a grand mal seizure. The thought was Avastin was the culprit. After nine months of firehose levels of various chemo’s being tried, multiple hospitalizations, plasma and platelet infusions, it was determined that I was severely unable to tolerate ANY approved chemotherapies.
Ironically, at the same time I was declared NED, No Evidence of Disease! I remained NED for about 1.5 years before recurrence – then only specific to my cervical/vaginal area with no evidence of metastasis. Next I underwent three months of intense internal and external radiation. Again, an attempt to blend chemotherapy was unsuccessful. The radiation was horrific to tolerate. I partook in additional pelvic floor physical therapy a year later and continue to have side effects. Good news is I am now over two years NED! This makes me the 1% to have been diagnosed at the level I was, given my commitments to recommended exams, 1% to survive to NED the first time and 1% again as a recurring survivor. Statistically, these odds are remarkable and cannot be explained.
How I felt after treatment: I think the hardest part for me is the feelings of where I belong in life and what I should be doing now. Some days I feel like I’m living under a dark cloud. Other days, I’m beyond thrilled to taste the joys of life. I wrestle with feeling whole as a woman given the ongoing pain and atrophy of my vaginal core. I attempt to date and I find my way socially, however awkward it is for myself and anyone even remotely interested in getting to know me.
What was most difficult for me: Most difficult I suppose is the complete sense of upheaval and failure by not being financially prepared. I realize this seems ridiculous but it's real. I also struggle with the lack of understanding and times of judgement from others about various details and so many moving parts of this journey.
What I did to help myself: To start with, I held tight to my sense of humor. Next, I had to set clear and reasonable boundaries with others so I could protect my soul from the negative energies that can creep into this healing process. I needed to stay realistic and positive in spite of everything. I didn’t expect miracles. I needed to own my choices and my treatments. My choice. My life.
My life after cancer: I don’t know what this means medically, nor does my care team. I’m still a cancer patient and will be for the remainder of my life. It’s been very difficult to resume life in my early 60’s despite the fact that I feel so much younger. I’ve essentially been homeless until this year despite having disability coverage to fall back on and I had to get very creative to resume a respectable life I can enjoy. It’s still weird when medical staff will look right past me as if they’ve never seen me before. Where is the woman we thought died? I look like a picture of health.
Where I am today: I’ve beaten the odds and feel that research into why I have would be beneficial to save others. Beyond cancer, I have an amazing series of life stories to share and this is just the beginning.
What I want other women to know: Hope exists – never give up. Go for quality of life not quantity. Get your house in order today or leave it for someone else to define for you. It’s your choice. Your life. Trust your body and get annual exams. Get your children vaccinated – this disease does not have to take more lives.
How I will try to help others: I listen, and speak at professional forums when asked to share my remarkable story. I need my story to matter and possibly save lives if only to sustain some level of hope for others.