MBinOregon Posted December 28, 2021 Share Posted December 28, 2021 Hello, my virtual fam, it's been a while - been hectic at work (I'm now a perma-WFH-er, yay) but mostly I've been away on purpose as reading sad stories here re-traumatizes me over and over again, I thought it'd get easier but it didn't... Anyhow, great to see all the folks who were around when I was more active on the forum 🥰 Some updates on my end: - 12/20 I celebrated my 4th diagnosis-ary. I had remembered leading up to the day, but totally forgot on that day. My cancer mentor/buddy from Chicago texted me mid-morning and it made me pensive for a bit. - early November, I ran 13.25miles, yup, a hair longer than a half-marathon. Nothing official, just me and my FitBit. I wouldn't want to be around sweaty people even pre-pandemic. In the consultation with the thoracic surgeon in 2018, he told me with 1 lung, I'd be able to "live a normal life, but won't be able to run a marathon or anything that strenuous". Of all the things he said that day, that stuck in my head because I'm stubborn as a bull and I certainly hate when someone declares I won't be able to do something. So although, sure, I've run a few miles several days a week as a cardio exercise but never done any long running (as I told him, I've never understood WHY people do any marathon. Where are they going? Nowhere, they come right back to where they started. Running for hours for what? Nuts!) But despite my utter dismay of anything "marathon", you see why I had to do it, don't you? So for 12 weeks, I trained hard (so hard that after each long run, I'd be flat on the floor wondering why I'm torturing myself like this, then remembered what the doc said). Yes, it took forever (2hours 44min to be exact) - hard to run fast when you only have one lung huffing and puffing - but I did it and I'll NEVER do it ever again (and I don't use "never" easily). It was the most boring thing I've ever done and I still don't know why anyone do it. Nuts! - July scan was good so finally back to 6 month (was 6 then a bad scan, back to 3 months for over a year and finally here we are). So my next one is in Jan. I am getting better at scanxiety - last couple of scans I walked in with "que sera, sera, whatever will be, will be" in my head. Worrying does nothing. It changes nothing. I'd be lying if I said I wasn't nervous at all, of course. - Got the booster early Dec. More importantly, I used this rare occasion out of the house to dress like a normal adult, ie. out of perma-sweatshirt/pants combo. 😆 Happy New Year, everybody! May we find joy in the present moment ❤️🙏 MB PS. here's the screen shot of my FitBit after that boring run. Just because Michelle asked. What Michelle wants, what Michelle gets 🤣 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 28, 2021 Share Posted December 28, 2021 Happy New Year MB! So glad to hear you’re doing well-I’m still working on “that list” and hoping this is the year I can row one lap around the lake. Congratulations on your wonderful achievement! Send a picture of the Fitbit readout to the doc!!! Just keep going.. until next time… carry on. Michelle Link to comment Share on other sites More sharing options...
Judy M2 Posted December 28, 2021 Share Posted December 28, 2021 Happy New Year, MB! And congratulations on your awesome achievement. I feel the same about scans. Worrying will not change the outcome, so I just don't. Thanks for posting your update. Glad to hear from you. Link to comment Share on other sites More sharing options...
MBinOregon Posted December 28, 2021 Author Share Posted December 28, 2021 @Rower Michelle Michelle, I'm attaching the FitBit screen shot in the original posting just for you 😉 Here's one lap around the lake this year for you! Cheers! (I said that with my tea cup in the air for you - things we miss as a virtual fam!) MB Link to comment Share on other sites More sharing options...
LouT Posted December 28, 2021 Share Posted December 28, 2021 MB, Nice to hear your story and to find someone I agree with. I have always thought the only people who should be running were escaped convicts, but maybe that's just me. Scanziety seems to know no bounds...but all good thoughts here that they are just super. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted December 29, 2021 Share Posted December 29, 2021 Well done MB! Great to hear from you. Stay the course. Tom Link to comment Share on other sites More sharing options...
hillham Posted December 29, 2021 Share Posted December 29, 2021 I really loved this post MB. I admire your determination! I am out there hitting the track too, partly because I want to prove that I can do it. Also, I've really appreciated the encouragement I've received both here and on the Ros1ders Facebook page, but like you, I sometimes become traumatized by the stories I hear. I feel bad even saying that. I have a scan exactly a week from today and am trying to stay Zen. I'm currently not taking ANY treatment, and feel fantastic, so I'm really hoping that this will continue longer. BTW, do you mind me asking if are you on a TKI at this point? I tried taking entrectinib, but it was too much for me at that point, and since I was NED after treatment, my oncologist decided I could just scan every three months. Link to comment Share on other sites More sharing options...
MBinOregon Posted December 29, 2021 Author Share Posted December 29, 2021 @hillham hi there, I don't know what TKI is, but the summary of all the treatments are in the footer of my post. I took Crizotinib for 2 years - pre & post surgery and during/after radiation. I haven't been on any treatment since Jan of 2020. Link to comment Share on other sites More sharing options...
hillham Posted December 30, 2021 Share Posted December 30, 2021 Thanks MB - a TKI is a tyrosine kinase inhibitor, and crizotinib, entrectinib, lorlatinib, etc. are TKIs that work to inhibit the Ros1 driver. I'm happy you're able to be off crizotinib and wish you well! Keep proving the naysayers wrong! Link to comment Share on other sites More sharing options...
Karen_L Posted January 4, 2022 Share Posted January 4, 2022 MB, HA, I love that you took on this challenge in the face of a doctor's prediction-- of course you had to! In a week, I am going to start training with other folks for an endurance bike ride on my stationary bike. It's a 5-hour reenactment of a climb up Mt. Haleakala in Hawaii. I don't have time for the new cancer nonsense that cropped up today; I'll keep you in mind as my inspiration. Karen Link to comment Share on other sites More sharing options...
Suzanna Posted January 6, 2022 Share Posted January 6, 2022 Gigantic, huge congratulations on running the marathon! Thanks for a daily dose of inspiration. Link to comment Share on other sites More sharing options...
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