My story began a couple of years before I realized it. In October 2010, I felt something hurting inside my left breast, and I thought I felt a lump. I couldn't find it again later that night, and it was some time before I felt it again, when my breast began to itch. The way the size fluctuated, accompanied by itching and pain, combined with my relatively young age, led to it being written off as a cyst or benign tumor.
By the time it stopped coming and going and became a constant presence, I no longer had health insurance and could not afford to go to a doctor to have tests run. I was under the age of 40, so I didn't qualify for my state's breast cancer screening program's assistance, or so I thought. When I was finally able to find a clinic I could afford and went in to have the cyst taken care of, the doctor there referred me to a surgeon for a biopsy instead, and revealed that with a suspect lump, I qualified for the program even though I was under 40.
That biopsy revealed the growth was cancer and although a mammogram - my very first – that took place a couple of weeks later found no tumors in my right breast, a PET scan taken that same day revealed a spot in my liver.
When I had my medical port installed for chemotherapy, my oncologist scheduled me for a liver biopsy at the same time. That biopsy proved the cancer had metastasized. I was newly diagnosed, and already Stage IV.
In those early days, I was still blinded by pinkwashing and thought that it was possible to be cured from Stage IV, that it just took more work, more treatment, more endurance. I thought that women died from complications resulting from treatment of breast cancer, not breast cancer itself unless they couldn't afford treatment at all. That was my fear in the early days, not that I was metastatic, but that I might not be able to afford treatment.
Since I am also completely deaf I have always qualified to the state as disabled and was able to get back on Medicaid once I was no longer working full-time as a Certified Nursing Assistant. Medicaid covers my treatment with co-pays I can afford, but I had to make the choice to retire from work and pack away my dreams of going to nursing school in order to remain on a health care plan I knew covered what I needed it to cover.
Coming to terms with what it really meant to be metastatic was a process I compared, on my own blog, to looking at Medusa through a shield's reflection. If I tried to face it straight on, I'd turn to stone and would not be able to process it. I had to approach it indirectly. I did this by planning my funeral, in an abstract outside-of-myself sort of way, until I no longer froze up at the thought.
I have no plans to go anytime soon and I'm currently doing great as my oncologist put it, with stable disease and otherwise good health. But the fact remains I'm metastatic and have been from the start.
Buzzwords like Hope and Cure were part of my landscape in the very beginning before I fathomed the depth of the issue, but no longer. Now, with all the free time and energy I have, I focus on spreading awareness of metastatic breast cancer and the need for funding for research and treatment. My passion for nursing has become a passion for metastatic awareness and a hope that there will be a viable treatment that either cures metastatic disease or turns it into a manageable chronic illness in my lifetime.
To read more blogs by Susanne Kraus, we invite you to visit her blog spot at metathriving.blogspot.com.
