In my experience, people want to know something about the person who is writing a blog, so that seems the best place to start. My name is Ann Pinyan. I feel like I should follow that up with my birthdate, and then perhaps my Medical Record number, because that’s so familiar. “Name and date of birth?” It’s what I hear every single time I visit the infusion center. I was diagnosed with Ovarian Cancer in late July of 2014 and am still in treatment just over 2 years later. I also recently joined the board for the Ovarian Cancer Institute, because I am so passionate about what they (now “we”) do – fund ground-breaking research that is literally saving lives.
So, this blog… I sort of want to call it an info-blog (or a blogfo, or blogtion, or blogicle or bloggish – let me know your ideas – I like info-blog) because while some of this will be articles from my own personal blog or new blogs from me or guest writers, we will also use this as a way to share critical information about OCI.
As to my personal journey, I have learned so much about this disease over the last 2 years, and thought it would make sense to kick things off here with a top 10 list.
Top 10 lessons learned about Ovarian Cancer (in no particular order)
- Until the new screening (funded by OCI) is validated, there is no effective test or screen for Ovarian Cancer. It’s not something that is tested in your annual lady visit to your gynecologist.
- A cancer diagnosis and even a Stage 3 or 4 diagnosis is NOT a death sentence. Not anymore.
- Chemotherapy, while it can be pretty awful, does not necessarily create an unbearable living situation. The pre-meds and drugs are amazing in helping to offset side effects.
- Being bald is really not a bad thing. I came to love it and in some ways miss it. I mean really, all that money saved on hair products and time saved in the mornings. And honestly it’s a badge of honor. Wear it well ladies. Do NOT be embarrassed by that beautiful bald head. It means you are a fierce warrior.
- Having the right doctor is very important – make sure you have someone who knows this disease and has treated it often.
- Attitude is everything. I mean everything. Do not give in to the cancer. In my house, we always said cancer was in the boat with us, but never the captain. Try not to live your life around cancer. It’s just that inconvenient thing you have to make time for some days.
- The next most important thing is a great support network, with both survivors and loved ones. You will be amazed at how many people WANT to help.
- Find a gimmick to make it more fun. For me, it was infusion center socks. I currently am up to 83 pairs of socks that have been sent or gifted – some of them far too rude to share here, but all of them fun and interesting. Other people take fun photos or take on superhero roles or costumes. The infusion center nurses here once told me about a woman in her mid-80’s who hung a sign on the IV pole every single visit. That sign read F*&% CANCER. Do something. It helps.
- Write or blog or talk to people in some way. It has been so healing for me and many others I know.
- Learn to ask for and accept help in all forms. I sucked at this and have had to learn to say yes, please bring food. Yes, please stop by. Yes, socks are awesome. People want to help and it will be a relief and joy. Love wins.
In upcoming issues, look for updates from our amazing scientist who runs the research lab, Dr. McDonald. And we’ll be all over this blog in September for Ovarian Cancer Awareness Month – yeah, I didn’t even know that existed until I GOT Ovarian Cancer. That’s a problem. And we can all help fix it. Spread awareness, talk about it, get involved with OCI, make a donation. We’ve got work to do!