World Domination, Step 1 | Increase Awareness

While talking with one of my doctors today, I mentioned that I might reduce posts to only once a week because it doesn’t look like my posts are being read by many folks. Then I rattled off the concerns I have: are my posts too long? are they poorly written? am I posting to frequently? After all, I’ve had people complain about my Facebook posts in the past, saying they muted me because I flooded their feed. Is that what’s happening here? Should I focus on one topic a week and do it up right? I mean, if my friends don’t even want to read my blog, why would a complete stranger? How will I ever effect any change if I’m just shouting into the void?

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After a beat, he asked me if writing these posts was helping me?

Certainly, getting these thoughts out of my head onto the page has been a huge help.

Does writing as often as you do work for you?

At least for right now it does, there’s a lot of thoughts rolling around in my head.

I certainly don’t intend to discount the need for increased research, but isn’t the biggest issue a lack of awareness? There are people out there that don’t even know ovarian cancer is a thing and early detection is key…

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Yes, and I’ve heard of friends who were aware having to beg their doctor to investigate their symptoms because they can so easily be written off as symptoms of aging.

Right. In my opinion, if your posts save just one woman that would be huge.

So, I’m going to keep going. I’m still looking for my voice and trying to figure out what works for me, but if you hang in there with me I promise I’ll get the hang of this eventually. And maybe, just maybe, these posts will help someone else besides just me.

If, like my sister, you think this blog might help someone who loves a survivor understand what they are going through and you know someone who might benefit, would you please consider sharing with them? I’d be ever so grateful!


Don’t worry, I’ve got this!

❤ P

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How Will Numbers Be In The Future?

I joined a Facebook group for ovarian cancer survivors so I could read about the experiences of others to help put mine into some context. One of the first things I saw was a post sharing a guide to CA-125 values prepared by the Foundation for Women’s Cancers . Another timely find as after I received my results from my 9 month post-chemo follow up appointment I noted that since I completed my treatment my CA-125 value has been creeping up. It is still well below the 34.9 cap on the “normal” range and my doctor seems pleased with how they are doing, but it still bothers me.

She stood in the storm

I can’t say that I found great comfort in what I read since it says that a increase in number over time is often an indicator of a recurrence. At the same time, there is still a great deal to learn about this test result and the guide does note that a gyn-oncologist is most skilled at interpreting the results for individual patients.

This result is just one more tool in the tool box so I shouldn’t give it more power than it deserves. I’ve noted a trend, but all that calls for is continued attention to future results and not a call to arms now. I guess I’m still recovering from being told that they don’t normally become concerned about an elevated CA-125 value in a “woman my age” until it hits 200 (when mine was 165). However, if I’m reading this guide properly it seems that it is not really considered an accurate screening test until it is determined that it is accurate for the individual with the value (clear as mud, yes?)…

Gratefully, it isn’t my job to obsess over these numbers and I have great faith in the abilities of the person who does have that job. Speaking of which, I see her tomorrow to determine what’s going on in my urinary tract so I can ask her then if I’m just being my hyper vigilant self or if there is any cause for concern.

Has your CA-125 value been a good indicator for you with regards to your diagnosis, treatment, and follow up or not? Let me know in the comments below.


No worries, I got this

❤ P