Having a Powerport is not a free ride. It isn’t one of those medical marvels that you have installed in your body and then forget about. A port, after all, is a direct line into your blood system– as John’s very port-paranoid anesthesiologist pointed out in our first encounter with him. As such, a certain level of protectiveness in regard to the port seemed like an ultimately pragmatic mindset to both John and I.
One of John’s very first questions was:
Can I surf with my port?
John was super-fortunate in that he actually had a doctor to whom he could address this question and be assured of a completely reliable answer. His liver surgeon (who was the one who strongly urged the installation of the port to begin with) was also a dedicated surfer. Only a doctor who surfs could answer this accurately; any other doctor would undoubtedly have said no. His very straightforward, brutally honest answer:
You can definitely surf with your port. However, I wouldn’t advise going out in really big surf. If you fall off your board and the port takes a direct hit, you could die. But because of the location of your port up by your clavicle, a direct hit isn’t very likely. Just be very careful, John.
As it turned out, the peripheral neuropathy John suffered as a result of the Oxaliplatin in his chemo regimen put a quick end to his longboard surfing. He did continue to bodyboard with me on the balsa paipo board he made for himself– with no incidents. Until his very last surf session, that is. Jet-lagged after our return from Alaska, he miscalculated and shot off his board at top speed, headfirst into the reef. Covered in blood and with a golf ball-sized hole in his forehead, he ended up spending the rest of the day in the emergency room, emerging with a very impressive bandage and a formidable number of stitches. At the time, we were focused on the bleeding issues due to his being on Coumadin. But if that injury had been near his port, John would have bled to death on the spot…
Spending time in the emergency room taught us another unexpected lesson:
Be hyper-vigilant whenever your port is being accessed.
Practice zero tolerance with less than immaculate cleanliness.
Don’t let a nurse who doesn’t know what she’s doing try to access your port.
John was completely caught off-guard on the occasion of this ER visit. Though far from being a port virgin at this point, he still cherished the illusion that his port would be attended to by competent well-trained nurses. The first hit to this illusion came when the young ER nurse took one look at the port and said “Oh, no, you’ve got one of those?” She quickly followed up with, “They showed us how to access these things, but that was a long time ago and I don’t really remember all the details.” Not exactly a confidence-builder for poor John…
This chapter of Shedding Light on the Cancer Journey http://www.amazon.com/dp/B004T3331M explains in detail what none of our doctors knew and what we had to learn through many medical missteps and hard experience:
1. How your port can make blood draws a breeze–IF you understand how the hospital hierarchy works.
2. Your port allows you to avoid the IV needle during CT scans with contrast– IF you know how to circumvent CT techs who are not allowed to touch your port.
3. During hospital stays, only specially-trained nurses can access your port. Learn how to set up your hospitalization in advance to assure that a team of these nurses is assigned to your case.
4. What happens when your port suddenly doesn’t work the way it is supposed to? Understanding in advance via my simple explanation goes a long ways towards allaying fear if that does happen to you.
All this and much more that can save you from the headaches and heartaches we experienced is now available in a format that can be read from your computer, Ipad, Ipod Touch, Blackberry or whatever: http://www.amazon.com/dp/B004T3331M
All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.