I will never forget that phone call for as long as I live. A week earlier I had undergone an open incision biopsy of a hole in my pelvic bone. (The miraculous story of how they found it in the first place is a story for another day.) My fiancé was met by the surgeon, following the biopsy, with positive news. The preliminary pathology showed nothing abnormal. I should expect a call in the next week giving me a clean bill of health and we could get on with our lives (and wedding plans). What actually happened couldn’t have been further from those sentiments.

The phone conversation went like this. “This is Dr. X. I can’t believe I’m telling you this.” The next sentence was communicated as one run-on thought. “You have Undifferentiated Pleomorphic Sarcoma of the pelvis, don’t google it!” No breath, just one run-on thought. He proceeded to explain it is a very aggressive and very rare form of bone cancer. It is so rare, in fact, that there is no approved protocol for treating it. They would do all that they could, but I had to enter treatment immediately. When I asked about survival stats there weren’t any, just a guess. Maybe 30%. I remember asking if he could provide me with a name of anyone who had received this diagnosis and had survived and he didn’t know of one. What was my first emotion? Hopelessness!! It’s so rare you don’t know how to treat it? It’s extremely aggressive, so I have to start something right away? You can’t point me to anyone else who has gone through this journey and has survived? I am here to tell you there is someone who has gone through this and has survived, me!! Doctors, no matter how well meaning, are not always right. I know this may be a new concept for some of you, but it is the truth. They only know what they know and new things are being discovered every day (not to mention determined patients who refuse to give up). So hold onto hope. There is always hope!!