So the oncology appointment went about as I was expecting, which is good. Doc looked at my bumps and said we could do one of two things: biopsy or monitor. He said if they were melanoma, they would get bigger, and likely within a month. Since I’ve already had them for almost 2 months, and they haven’t changed AT ALL, it’s unlikely they are melanoma.
So, no biopsy today and I’ll have the dermatologist check them at my appointment in December and confirm (hopefully) that they are just dermatofibromas, as my Googling indicated 😉
While I was at my appointment, I saw a flyer on the wall for a panel on “Fear of Recurrence.” Um, HELLO! That’s exactly why I was there today! The panel was tonight, and my oncologist was one of the speakers, so I made arrangements with my sweet husband to put Emmie to bed and I went.
I was glad I did. While I’m sure I didn’t absorb as much of the information as I might have liked (high emotions tend to limit how much you can take in, and my emotions were pretty high, since my diagnosis is still a LOT newer than most of the other people there, thanks to how long chemo usually takes compared to the one month fast-track of interferon), it was still helpful to hear.
Some people talked about how now people are treating cancer as a chronic condition; not just for those who have cancer that has recurred or never really left, but for those like me, who just need to be vigilant and good about follow up care. Thinking about cancer more like diabetes, or even asthma (which I also have), somehow makes it feel better. Cancer does not have to equal death.
There was a very interesting moment for me. I asked if others had used the internet to help them find support (as it’s obviously been a great support & resource to me), and one gentleman said, “I started looking when my wife was diagnosed and I saw way too much bad stuff and got overwhelmed.” When I said I had learned how to filter out and figure what NOT to look at, he responded, “I don’t know how to filter anything!” Then it hit me (not for the first time!) that I was WAY younger than anyone else there. There was clearly a generation gap. (The lady sitting next to me had no email address when filling out the contact sheet. She knew she was out of step and made fun of herself, but it is still amazing! I don’t even know how many email addresses I have!)
Even later, talking with the young(ish) woman next to me, she asked me how to figure out reputable sites from non-reputable ones. I mentioned that we can read THE EXACT SAME ARTICLES as our oncologists online and SHE HAD NO IDEA. She was clearly utterly taken aback by this concept. When I told her about the research and reading Peter and I had done on breastfeeding and interferon, she was amazed.
Yes, we do have unusual amounts of experience reading scientific articles, and yes, it certainly is an acquired skill to be able to make ANY sense out of journal articles, but it can easily be done through the magic of Google Scholar. But most (all?) of the people in that room, professionals aside, had no idea these things were even AVAILABLE, let alone how to access or read them.
I talked with the oncology social worker and my oncologist who were on the panel tonight about my experience harnessing the Web, and they asked if I might be interested in being part of a panel in the future about that. Of course!!! Anyone who knows me knows I love sharing knowledge (haha!). That’s actually one of the main reasons I started this site in the first place! Of course, all those great resources on surgery, cancer, pregnancy, etc. etc. that I have stewing in my head are still just outlines and drafts I have going, but someday soon I’ll get started on them.
As the awesome social worker pointed out, part of the “after cancer” experience is trying to make sense of the whole experience, and being a resource & writing out these tips for others is useful for me. It helps me to process and make meaning out of my experience.
So who knows, maybe I’ll open up the magic of the Interwebz to a whole group of people who barely know how to use a mouse 😉
As a reward for reading this far, here is a picture of Emmie in her Moby and sunhat after the lovely autumn walk we took today, in anticipation of the 8-16 inches of snow we are supposed to get by tomorrow. It was 80 yesterday and is now 30 and slaining (snow-raining) in earnest.