Something really cool happened this week. As you may have figured out from some of the things I’ve written, the road that I have been down with this bone tumor has been a bit lonely. Not because friends or family haven’t been supportive, but because there aren’t many that can identify with what you are going thru. Not really sure what the overall statistics are for how many people have bone tumors, but I do know that only one in a million get a giant cell bone tumor. So that’s about 350 people in the US walking around with one…and they may or may not know it. I remember asking my physical therapist early on if he had ever treated someone with a bone tumor before and he sad he treated two other people both of whom were under the age of 18. I’ve only run across two other people in my wide circles of relationships that also had a bone tumor.
Once you find out you have a bone tumor, the next big question is “benign or malignant?” For me, I had to wait three weeks to find out and those three weeks were full of ups and downs and questions and doubts. I called over to a local nonprofit that provides help and support to folks with a cancer diagnosis to see if they had any support for someone in my situation and the answer was no–until I was diagnosed with cancer they couldn’t help me. I was still facing many of the same questions someone with cancer would as far as finances, insurance, treatment options, lifestyle changes, etc. And for all we knew at that point it could have been cancer. Luckily it wasn’t. But it doesn’t mean my life wasn’t interrupted in a big way, that we didn’t have to take it out and hope we got it all, that I don’t have to deal with the possibility of a reoccurrence.
All this rambling is just to say that there’s not a lot of support for folks with benign bone tumors despite the fact that it is a life changing event and a possible life long battle. In fact one article that I read about the giant cell tumor stated that the treatment options have not progressed in the past 30 years due to lack of research–the same 30 years that have seen the human genome mapped, a once a day antiretroviral drug therapy for the treatment of HIV developed, and almost wiped out pollio, smallpox and measles. Again, I was lucky and I know it. My bone didn’t break before we found the tumor so it was a removal and fill surgery, but others with my same and similar diagnoses are not so lucky. Some need their bones supported by hardware, have to have limp resection and others face amputation…all because of a non-malignant bone tumor.
Yes, I did mention good news in the first sentence of my blog, and here it is…this week I got to connect with two other ladies via social media that have also had a bone tumor diagnosis, all because of a post on Instagram. To say this is an answer to prayer is an understatement as part of the reason that I have been and will continue to tell my story is in hopes that someone might connect with it as I wish I had been able to at the beginning of this crazy journey. Not sure what will happen from here, but I do know that it only takes a small group of motivated people to accomplish great things. Be on the lookout for more to come and feel free to holler at me if you or someone you know needs to be/wants to be a part of the great things to come.
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.