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.
And here is today’s picture of a happy baby:(She’s smiling because she’s never experience snow in her whole life! Oh, poor baby who hates to be cold, how your life is about to change!).
Rob Hill said:
1) she's adorable. Even more so than before. Adorabler?
2) growing up when we did, it's so easy to assume everyone is at least kinda tech savvy. My grandma emailed like a champ. But there are some demographics that just missed it. And it's really not even socioeconomic, as 5 mins on Xbox Live will teach you. Age really is this monumental barrier if people let it be one.
I admire my mom for being a devotee to stating caught up. She thinks falling behind even one notch will be impossible to come back from. So there she is, forcing an iPhone on my dad, as he fights it tooth and nail.
3) best of luck at the appointment. You three are never far from Manda's and my thoughts.
Rob, I totally agree about technology. I also really admire my mom for her tech savvy. She's probably the same age as some of the people were in that room, yet my mom STILL knows more than me about many different programs, and she's always ready to learn more. I honestly think that learning, and willingness to adapt and change is what keeps people young (since I think both our moms seem SUPER young!). And both our dads are funny 🙂 Next time you see my dad, ask him to show you his phone (haha!).
Thanks for the thoughts. Sending love to you and your beautiful family.
My ears were burning and I couldn't figure out why…but now I think I do (tee hee). Found this on my old fashioned computer as my humble contribution to the conversation. xo papa
John Bloom said:
Papa Casey and Papa Bloom (me) are just two 'angry birds'. Heck, my dad was frustrated by tne new thing of his day…a microwave oven – but he did learn how to boil water with it for his cup of instant coffee. Me, even as part of the "You Are Never Too Old Technology Company", I am frustrated by the cost of all this new technology. How will my daughter pay for all the technology that will be required of her four children? My mother's one piece of technology, a Royal typewriter, lasted more than fifty years. She bought it when she went to college at Ohio State in the roaring twenties and still used it to type the final copy of my dissertation in 1973. I could rant on….
Shannon, you're awesome. You know that right? I love how much you want to help other people. And the rewards at the bottom – fantastic. I love her sun hat! I kinda want one. I can't wait to meet her, and see you and Peter again … in a few WEEKS!
WEEKS??? Crazy! I keep wanting you to travel forever, but then I also think, "Aren't they back YET? I want to see them!!!" Safe travels in these last few weeks! Enjoy!
Sarah V. said:
I read this and kept thinking first of my awesome friend and – well, yeah, just about my awesome friend. Then, about people in my area of research (Human-computer interaction) who look at how patients, loved ones, etc. use the internet for support and to reach out to others. I'm going to forward this blog post to a friend at the U of Toronto – he may find it helpful for his research. I really appreciate how you were able to step back and take a meta-level view of the situation and realize "hey, I'm handling this whole thing in a way that others haven't really thought of, and I'm able to harness technology in new and very helpful ways." And *then* you were given this fantastic opportunity to share your knowledge. I'm looking forward to hearing how your outreach efforts go – and I am happy to help in any way I can!
Sarah, you are so sweet! He should also check out I Had Cancer, kind of like Facebook for people who have been affected by cancer (fighters, survivors and supporters). Very cool. Drew Olanoff was maybe one of the originators of "social good," as he calls it and used Twitter very, very effectively after he was diagnosed with lymphoma. He's also a cool dude and we've emailed a bit 🙂
Thanks for the encouraging words. YOU are awesome too!!!
Diane Phipps said:
First off, WAY cutie pics of you and the baby – just the cutest ever and I can totally see where she gets her looks from – her great Mom & Dad!!!
And second, also very important, is I'm sure you well know that everything happens for a reason in its own time and space. Meaning, I most definitely think that you'll be in your near future doing some tremendous resource writing and teaching and will help a whole lot of people out there just at the point they will feel that they have no where else to turn. You will be that light as you have been so many other times in your life.
Have a great day!!!