Course 2 - DIY fail

"Thanks for pulling the needle out of my chest."  That's a phrase I wasn't expecting to say to my husband, ever.

I don't think I've gone into the weirdness of having a port.  Mine is implanted in my upper right chest wall.  Having lost that bit of weight, it's pretty obvious unless my clothes are covering it.  Mine is a dual-lumen power port.  It has two round receptacles that make a decent little bulge under my skin.  The tubing attached to the receptacles goes up over my collarbone towards my neck and the catheter ends somewhere near a major vein.  I don't know exactly because I didn't want to know when they offered to tell me back when I gave my consent to the procedure.  When they flush the port with saline - which they do whenever they access it, or de-access it, and before and after administering anything through it - I can usually taste it.  I can taste some of the other medicines as well, like the heparin that is used before de-accessing to prevent clotting.  It's way in the back of my throat and feels pretty weird. When it is accessed the needle mechanism protrudes about another half inch and is secured with some steri strips and a clear dressing that covers the whole apparatus, with just a small opening at the bottom for the external tubing that is attached to the needle.

A nurse has to access the port, but patients are often taught how to de-access it themselves, especially those undergoing my regimen who are at home with a pump.  It saves you a trip to DFCI for what is essentially a 5-min appointment.  We're not terribly far away, but accounting for traffic, we'd get 2-3 hours back in our day, every other week.  So it sounded like a thing to try.

For the first course we had to come back since we didn't know how to do it.  My oncology nurse did the de-accessing but she described the steps as she did them, and gave us the written procedures with pictures and a link to a video on the DFCI website.  It isn't all that complicated: turn off the pump, clamp the tubing, disconnect the pump, sterilize the end of the needle tubing, un-clamp, flush with saline, flush with heparin, clamp, remove the dressing and steri strips, remove the needle, discard in sharps box, put the pump into a plastic hazardous materials bag, seal it, return it next time.  The nurses do this in maybe three minutes and make it look incredibly easy.

For this second course I was not convinced I could do this myself so we came back again for the disconnect.  My intention was to do it myself but with the nurse supervising.  I thought that if I could do it once in a safe place, I'd be comfortable enough to do it at home.  Lots of things were not as I expected:

• wearing purple nitrile gloves inhibits your ability to grasp things securely, like syringes of saline and heparin that fall on the ground and have to be replaced...
• you can't hold the end of the sterilized tubing and take the cap off a syringe at the same time, even with two hands, especially when wearing purple nitrile gloves
• pushing a syringe full of liquid into the already weird port is even weirder when you are doing it to yourself
•  my neck isn't long enough for me to bend my head to see well the dressing I have to remove from the needle, carefully and slowly, so I don't pull it out all at once
• not only can I not push a needle into my body, I lack the will to pull one out, too.

You have to hold this base part of the mechanism down and then pull this plastic bit straight out to remove the needle from the receptacle and have it in the safety position in the mechanism.  I did try.  I sat there and inhaled courage and exhaled fear and tried to pull it out but I just couldn't do it.  After I cried about it a little bit, my superman husband did it for me, just like that.

And so next time we'll do it together and hopefully it will all go well.

Otherwise, it's day 4 and I'm tired, but overall this course was better than the first.  It probably helps that I'm more recovered from the surgery now and am getting some strength back with my walks and commuting to work and all.  I was able to work from home without too much trouble and without any naps!  Ativan is my new best friend; I took one the first night, actually slept, and had basically no nausea.  I did have sensitivity to cold in my fingertips this time, just once when I took some strawberries out of the fridge, and that was annoying but not terrible.  I get a weird sensation in my mouth when I take a first bite of food after not eating for a while, or a first sip of anything but water, like I'm dehydrated (which I might be a little, this regimen is dessicating).  The fatigue hits me when the pump is about halfway through on day 2 and doesn't really let up til day 5.  My hair is thinner but it's not falling out all together (not expecting it to).

I know it could be a lot worse.  It could be something that isn't treatable or operable. 10 more courses still seems overwhelming but at least there is a light at the end of my tunnel.  Tomorrow is day 5 and I'll feel normal, hopefully, for the week in between.