Chemo Day One

While the lumpectomy was technically day 1, today starts the long haul of chemo and radiation. And the most changes to my body are coming.

After an Ativan-fueled sleep (amen for Ativan), I woke strangely excited, like I was leaving for the airport to catch an all day flight to somewhere. Japan?! The clothing is the same - comfy outfit set, sneakers, big scarf, cute vest. Minimal makeup. And the undercurrent of anxiety is there too - What time is it? Do I have everything? Hop in the car, worry about traffic, activate directions in Waze.

Maybe if I can frame my mindset to think this is just a trip (to a spa?), this can be more of an adventure than a slog? Pulling up to MGH. Must gather my bags and check in. See, just like a trip!

I arrived at MGH and was immediately taken to a nurse to access my chest port for a blood draw. Much easier than I thought. Then a quick meeting with my oncologist (who I love so much) and off to scheduling.

Scheduling wasn’t fun and breezy. I felt like I was at a check in counter at Logan and my seat assignment was messed up; I wait, holding my breath, just like when the airline employee tries desperately to find me a seat. The scheduler and I are both sweating.  Due to holidays in the fall, access to infusion rooms is tight. So far, this is the most stressful part of my morning. It’s a good 1/2 hour of waiting and juggling the schedule. My stress level is up for sure I’m typing here just to keep my mind occupied.

I am finally released from Scheduling and return to the waiting room to start the cold capping and infusion. And wait. And wait. Turns out my infusion is scheduled for 10:30 and my friend who I asked to be my cold cap buddy has now been waiting a while. My husband texts another friend to say “we are running behind hold off on bringing lunch”. A girl’s gotta eat and she’s bringing a sandwich from Tatte. Yum.

“Jennifer”. I hear my name and it’s boarding time! My husband, friend and I head to my first class cabin. Really, it is: private bathroom, with walls not curtains, chairs for all and in a quiet area. Everything first class flying should be, minus the IVs, line up of drugs and and the Paxman machine.

My fantasy of this being a fabulous trip abruptly ends with the cold capping. My cold capping buddy and I get an A+ for putting it on. Wet my hair so it’s slicked back on my head. Put conditioner gently on my hair so my hair doesn’t stick to the cap. Cut the included “panty liner” (I kid you not) to the arch of my hairline and stick it on my forehead to protect my forehead from the cold. I'm looking good.

Now the hard part. The blue, tight-to-the-scalp piece goes on. This is what needs to be aligned to your hair perfectly.  We adjust. It’s good. The helmet (covered with bungees cords) is next. Turn it inside out, place the front at my forehead and flip it right side out over my head. My cold cap buddy is brilliant. After tightening the chin strap, she spiders her hands on the top of my head and tightens the back bungee cord. I pull down at the ears and voilà. The nurses are impressed. High fives all around.

Before I am hooked up to both the cooling machine and the IV, my cold cap buddy and I get in several deep squats. The nurse is laughing at us when she comes in.

I get hooked up to the Paxman machine and set the timer on my phone for 15 minutes as a coping method.

I pause to share how this works - The blue cap on your head has liquid in it.  When it is hooked up to the Paxman machine, it circulates the fluid through, freezing the top of your scalp to -35 degrees F.  This freezes your hair follicles during chemotherapy.  Therefore, the hair follicles cannot be accessed by the chemotherapy.  I have an 80% chance of keeping 50% of my hair.  The good news is that because your hair follicles are preserved, your hair grows back quickly.  The first 15-20 minutes are apparently excruciatingly painful.  After that, your head is numb and it is tolerable.  So that's the story.

Unpause.

I start the 15 minute timer and the cooling begins.  Immediately, if fees like ice needles are sticking into my head.  I have my earbuds on and I turn the music up really loud.  At the same time, my infusion nurse is injecting all of the preventative meds, including Benadryl in case I have an allergic reaction to one of the treatments.  At 3 minutes in, I wonder if I've made the right choice to cold cap.  At 4 minutes in, I start crying.  At 7 minutes in, I have waves of dizziness from the Benadryl.  I don't feel as though I can control my eye movements; they are darting around. My head has a horrible sensation that I've never had before.  It's as though every "fight" response my body has comes to my scalp's surface.  I know I will never, ever, ever do a cold plunge.

My cold cap buddy steadies me, reminds me to breathe.  I go into a sequence of breathing exercises.  I start singing (quietly) lyrics to the songs that are playing in my ears.  And I'm down to 3 minutes left and I give my cold cap buddy a thumbs up.  I can kind of see the light at the end of the tunnel.  I can see the runway.  At the end of 15 minutes I think I'm going to live.  At the end of 20 minutes, I am perfectly good to go for chemo.  It was a turbulent ride, the kind where the passengers on the plane applaud at landing.

Because of the Benadryl and Ativan (given to endure those 20 minutes), I am sluggish and nap. And then it's like I'm back on that long haul flight, napping on and off, occasionally playing on my phone.

I give my cold cap buddy a huge hug and thank you and she takes off for the rest of the day. I nap.  My friend who is bringing lunch arrives, and I ravenously eat.  And then I nap more.  I feel leaden.

The chemo, taxol (the T in THP), infusion ends and after another hour, I can remove the cold cap system while the P (Perjeta - a HER2+ drug) is administered.  Removal was easy and my scalp returns to room temperature quickly.  Then the H (Herceptin - another HER2+ drug) is administered and more time passes.  I'm restless, like on hour 12 of a 14 hour flight.  And tired. And I can't wait to jump in a shower.  

Finally, I'm headed home with my husband.  I am relieved and steadied.  One down.  xo J