Course 10 (of 12) - Dress for Infusion Success

Here we are again at DFCI for a full day of steeping.  My full pre-med dose of dexamethasone is "on board" (as they say here) and I'm waiting for my port access and blood draw.  As I wait I am thinking of the struggle I had deciding what to wear today.  I think it's an often overlooked fact of life for chemo patients, certainly ones with ports and pumps like mine.  And now it starts with the pre-med steroids I take at home, believe it or not.  Let's have a look at dressing for infusion success.

A side affect of the dexamethasone is sweating.  Especially at night.  I have to say I'm glad this pre-med requirement happened during the winter; otherwise I'd be a shriveled up, dessicated lump of person by now.  Between my first and second dose (~11pm and ~5am) I lose what seems like half my body weight in water.  Luckily I'm able to sleep in between doses, though I tend to wake up for a few minutes once or twice.  Since I also get hot flashes nowadays sometimes it isn't always obvious what the difference is and I don't spend tons of time trying to figure it out during those few minutes.  But when I got up at 5:30am this morning for the second dose I was drenched through and through.  Which leads me to rule number one:

Rule No. 1: steroids at night, dress very light!

Every other week the first thing I do is go to the lab to have blood drawn.  They primarily check blood counts and levels of certain vitamins.  As I have a port, and will utilize it for the infusion, I also have blood drawn via it.  It's located at the top right side of my chest.  The nurses need clear access to it to properly sterilize and place the needle.  It's winter, but cozy turtlenecks are out (can't pull them down far enough) and many crew necks also can't be stretched far enough.  V-necks or button down shirts are best.  I'm short-waisted and don't find button-downs all that comfortable, so when I can I opt for v-neck shirts and sweaters.

Rule No. 2: v-neck shirts for port access to work!

The second thing I do is head to my oncologist's office. I have vitals taken before the appointment - blood pressure, O2 saturation, temperature.  For the blood pressure they need my arm, usually  my left.  So I think about how thick my shirt is if it has long sleeves (the pressure cuff is fine with thinner shirts), or wear a short-sleeve if it's not too freezing, and if I'm wearing a sweater can I take it off and put it back on easily, those kinds of things.  What works best is a short-sleeve with a cardigan.  Then my big head doesn't get in the way at all.  And I have a couple of super-cozy ones that I got from work and from my sister - like wearing a blanket.  Perfect.

Rule No. 3: cardigans for warmth and easy removal - even big heads give their approval!

After the oncologist appointment I head over to the infusion room.  At the lab, the needle tubing extends a few inches and it's fine to leave it under my shirt until it's needed (they sterilize before attaching anything).  I'll pull it out and over my shirt as soon as they need it.  Even crew shirts are okay for this part - there are what seem to be miles of tubing once they get going.  What matters most here is comfort.  I considered this when my infusions were only 2 hours.  Now that they are anywhere between 6-8 hours, it becomes super important.  I might get a bed but usually it's a chair.  A bigger, cushier, reclining chair to be fair, but still, sitting anywhere for 6-8 hours is a drag.  I don't worry so much now about anything in my belly needing to heal, or interfering with my many scars, but still prefer no buttons or buckles if possible.  Fuzzy fleece yoga pants or my super-light Under Armour training pants (also a gift from work) are the best.

Rule No. 4: a smooth waist and long infusions feel great!

During the two days of eff you home infusion, frump is king.  I can't shower with the pump but still try to change clothes before I get to work (remotely).  That said there have been several days of all jammies all the time.  It's cool - no video conferences for me.  I usually leave the tubing under my shirt, with enough slack for moving around, and have the pump strap across my body.  (I used to not wear the strap and just keep the pump near me, but then it's too easy to forget it's attached and get up too quickly and risk pulling the whole shebang out of my chest - I've had a couple close calls...)

Rule No. 5: Working from home?  Embrace the frump zone!

And finally, after those two days, I go back to DCFI for the disconnect and my Neulasta injection.  Same deal with port access here - best if they can get to it easily.  Pulling the dressing off is sometimes like playing Operation, trying to get the pesky corner to lift up so they can peel it all away, one thing at a time, before finally freeing the needle and pulling it out.  Then they need access to my skin for the injection.  I usually do left arm for this too, so again, short-sleeves work best.

Rule No. 6: short-sleeves for injection, that's perfection!

And then I go home and take an extra long shower to counter the accumulation of two solid days of cozy, frumpy infusing.  I find no clothes are best in that situation.

Rule No. 7: au naturel is the solution for thorough ablutions!