Results 26 to 37 of 37
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12-19-2018, 01:28 AM #26
I hate when threads are left dangling, so it feels like this deserves an update. I skied my last time with that port on Sunday and got it pulled out Monday. Little sore now, so hopefully good by the weekend. Only thing it really kept me from doing was go karts, oddly enough.
Thanks for all the advice and kind words! Wish I'd taken the chest protector advice, but for mountain biking--I'm still trying to dial my risk acceptance back to reasonable. Skiing through treatment was perfect--challenging to manage temps and energy, especially at first, but practice helped. Easier to motivate myself to ski than anything else, and the exercise made a huge difference. The muscles I used are (mostly) still there and every day I got exercise went better than the ones I didn't. I even skied on day 2 of a chemo cycle once. Got the best powder day of my life day 6/rd 4 and the muscles (mostly) felt good enough to take advantage. So much better than I expected going in! I only wish I'd known early on not to overheat hands or feet while on Xyloda. In retrospect, the dreaded hand and foot syndrome came straight from sweat events.
18 months cancer free now--my med onc said I could pull the port 6 months ago, but I decided to give it one more clean scan first. Surgeon says "if you need it again we just put in another one!" Ugh. OTOH, ports are a speed bump in the grand scheme. So thankful to be seeing it that way now: with a 4% chance the trees are really too close--but looking between them still helps.
Sorry for the blog/hope it helps somebody. Fuck cancer.
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12-19-2018, 01:44 AM #27
Right on man. Cool update and good to hear you're doing better
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12-19-2018, 02:31 AM #28
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12-19-2018, 07:22 AM #29
FKNA! ✌️
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12-19-2018, 07:59 AM #30
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12-19-2018, 08:04 AM #31
super happy for you and your family, jono.
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12-19-2018, 08:17 AM #32
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12-19-2018, 08:25 AM #33
Congrats ! Now get out there and rip the shit out of that.
Merde De Glace On the Freak When Ski
>>>200 cm Black Bamboo Sidewalled DPS Lotus 120 : Best Skis Ever <<<
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12-19-2018, 08:31 AM #34
Hey Jono- good on you. I skied and biked all winter/ spring with my port. The worst was the pack straps, for sure. I ended up padding the right strap with ensolite and duct tape around the port, which worked fine. My port always made me ache, especially up in my neck, and my onco team kind-of poo-pood my concerns. Then I had it removed as soon as I could (July 3rd), and the surgeon noted that it was mildly infected. Harrumph!
I only miss it for about 5 minutes every 3 weeks when I get a maintenance infusion and they have to use a needle.
Am working with a trainer to get wicked strong again, plus clean diet. No more cancer for me!
Stay strong brother! Fuck cancer!Last edited by homemadesalsa; 12-19-2018 at 09:24 PM.
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12-19-2018, 10:08 AM #35
Congrats Jono and HMS. Put that shit in the past and ski on!
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12-19-2018, 10:20 AM #36
Fantastic thread and maybe my favorite thread title of all time. I left mine in for years out of superstition. So much smarter to pull it at first opportunity. Sorry to hear about the infection and pain, HMS, but glad you both were able to avoid clotting/blockage necessitating a removal and insertion of a new one on the other side...
Have a great winter!
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12-19-2018, 11:16 PM #37
Thanks all!
And thanks for pointing that out, hafjell. I tend to ruminate on Murphy's Law (+ corollaries) and the thought of that thing coming out right before needing it again is...daunting. But leaving it too long sounds gnarly, too. As it was my wife got quite a show--said it looked like the doc was delivering an eyeball from my third nipple! Bummer the pics didn't turn out better, cause I wasn't turning my head that way. Kinda tempted to hang it on the tree by its little tube now--but I probably won't. Probably.
I've been following your battle, too, HMS, thanks for all the encouraging stories, I'm always stoked to see you kicking ass! Speaking of which, I saw a study lately showing clear improvement in outcomes with exercise in treatment, but to me the headline actually undersells it. It was brutally hard to get up and go, but once going it would turn my whole day around. It would have been hell for my wife (or anyone) to look at me those days and try to get me up to move. But powder--such a motivator!
Wicked strength and ripping the shit out of a few things sounds good.
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