Small Victory, Small Defeat

Today was a very long day but could have been much longer!

Started out with the 6:20 ferry. They said it was full. I whipped out my medical paper that gives me guaranteed passage on this vessel (thank you SCCA and Washington State Ferry System), it was the people who had to wait for the next one this time.(small victory)

First stop: UW for an echo-cardiogram. I don’t have those results but it must be fine because it didn’t stop me from having chemo today.  Some of the valves in the heart appear as stick person arms clapping as they open and close to allow blood flow.

Next stop:  SCCA for a slew of appointments with details I won’t bore you with.  After the last appointment at 1:00 pm-1:30 pm my nurse did tell me that they were able to move my appointment up to 2:00 pm instead at 6:40 pm as originally scheduled!  (Another small victory!)

So, the nitty-gritty about the first chemo because I know you’re curious to hear how this went.  I’ll write this out in list form because 1) it helps me organize my thoughts correctly and B) it significantly lessens the amount you have to read! 🙂

  1. MA calls after paging us to room.  Quick orientation to the infusion unit would’ve been much longer but me, ready to get this business over, requested only bathroom and food options.  I’ll be coming here for 4 months, I’ll figure it out.
  2. We meet our nurse, Cassie, who used to work at one of my first loves (Swedish First Hill).  She got floated a lot to their oncology floor and found something she enjoyed and here she is.
  3. Cassie got my port all hooked up with the normal saline they give to help keep you hydrated because it will help flush the toxic sludge they’re about to give me.  Saline running on a pump continuous with treatment.
  4. Pharmacy brings the medications in a red bio hazard cooler wearing special gloves (because it’s toxic meds they’re bringing). Holy Hell!  Frightening, right?
  5. Pit stop for a change from a bay with a recliner to a room with a bed.
  6. After getting reorganized in our new room with a bed, and more space for the chairs that my people needed.  (other small victories)
  7. First thing I get is Decadron, a steroid.  It helps with nausea in Chemoworld.
  8. Next I get a medication called Palonosetron (aka Aloxi).  This a potent 3 day zofran.  It helps with nausea and is non-narcotic.   (*note to reader:  nausea is my kryptonite.  I can handle pain very well.  Nausea?  Game over)
  9. Here’s where the fun really begins.  They start me with the anti-nausea medication fosaprepitant (aka Emend) that lasts for 5 days.  Pretty stoked at this point that I could breeze through the weekend without nausea!  (Hello Myles Kennedy and Tim Tournier)
  10. Let me preface this item by stating that in the time frame it takes me to type this, it’s a RAPID progression.  The medication gets going and I was feeling a little hot.  I’m menopausal so I felt it was a hot flash.  Very soon after realizing I was having a hot flash my throat began to feel a little scratchy.  At nearly the same time I felt my lips getting bigger, I began to BURN UP, I turned violent shade of red all over, threw off the blanket ready to come up out of the bed in a panic because now my eyes are swelling shut.  I’m not sure I can breathe so I keep my eyes closed and take slow deep breaths (I mentally am doing an ongoing self-assessments to talk myself through this). I hear voices, they’re all talking.  I hear bits and pieces and then someone is talking to me asking me stuff, I answer as best I can.  They’ve already stopped the infusion at the onset of my redness and called in the Calvary so I was very well cared for during this panic inducing moment.  I distinctly hear someone to offer to start it again at a slower rate to see if maybe I could tolerate that a little better (crazy?  that’s what I thought but I swear I did hear it, coulda been the strong allergic reaction I was having though).  They gave me 25 mg of Benadryl to help with the symptoms but fortunately they did not have to give me Epinephrine.  My blood pressure spiked to like 174/88-ish (I’m normally 110-120/60’s).  It was a really scary experience but I’m glad it was just the nausea medication and not the chemo meds because they can throw a lot of other nausea meds at me but not so much of the other.  (small defeat) (photo taken after the worst was over)IMG_6373 2
  11. Now that I don’t look like I’ve been seared by the light of 1000 suns they say we’re gonna wait for 20 minutes to give me a break and “recover from that”.  I’m ready to get this thing over now that I’m not on fire.   So we wait a bit.  (small defeat) Then I remember that if this was the original appointment and this happened I would likely have missed the ferry home at 10:50 and would’ve had to drive around (the last ferry is at 12:30 am) (small victory cancels out previous defeat)
  12. So we start with the first chemo drug, doxorubicin (aka Adriamyin).  This is 3 syringes of red liquid running on a syringe pump and infuses over a total of 15 minutes.  They call this Red Devil.  It is supposed to interfere with the growth and spread of any remaining cancer cells.  It can cause dangerous side effects to the heart which is partly why I had the echo cardiogram this morning.  This medication turned my urine pink, which is an expected finding in this situation.  I feel I’m closer to farting that rainbow.
  13. The next medication given was cyclophosphamide (Cytoxan) which ran for an hour.  It also is to interfere with growth and spread of cancer cells.  This gem increases my risk of developing other types of cancer (lists specifically bladder cancer).  Sign me up but bring me my water bottle.
  14. Following the chemo meds, which didn’t make me nauseated during treatment but did make me feel a little out of it, like maybe drinking 2 glasses of wine or beer but I felt clear enough to follow a conversation. (squirrel) (pic is when Im looking a lot less red and puffy)IMG_20181213_161557.jpg
  15. Finally all the infusions are done and we pull my line from the port, tape me with a band-aid.  Vitals long ago improved. Redness gone, I can see again but my eyes felt puffy and some unpleasantness happened to the skin under my eyes but hopefully it will resolve by morning.
  16. One last item on the chemo agenda is pegfilgrastim (aka Neulasta).   This handy-dandy device sticks on your skin.  Once the nurse activates the device she has 3 minutes to attach it before it begins to count down to injection.  It’s a long 3 minutes.  Cassie, my nurse,  said it would feel like a rubber band snapping on your arm.  We all waited.  I wish we had recorded that moment with a wide-angle lens because we were all quiet, watching the device and commenting on how 3 minutes seems forever now!  Finally, BAP!!!  We all jumped, I squeaked a little.  It didn’t really hurt.  It felt just like she said.  This  medication doesn’t deliver immediately.  It’s a timed release system that will auto infuse 27 hours after activation.  Then I take it off and dispose in a sharps container.  This is the device:
  17. IMG_20181213_223250.jpg
  18. We made it to the 6:40 ferry with thismuchtimetospare and headed home! Keep in mind that my original appointment would have just been starting!

 

So, that’s a wrap.

My Happy: My friend Cynthia and The Mr waited patiently and pleasantly with me for one of the longest days ever!  I have good peeps.

P.S. Can you imagine how long this would’ve been had I added ALL details?  You’re welcome. Chemo treatment #1 — in the bag!

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9 Replies to “Small Victory, Small Defeat”

  1. Chemo takes forever especially when I react by not breathing and needing six nurses to give me Benedryl and corticosteroids to revive me into the sleep of a vampires kisssed woman. Lucky I had my friend Athena the warrior there with me to yell – hey she’s not breathing get over here now – and six nurses descend upon me like archangels to revive my aching body into a coma like sleep state through the rest of the Taxol drip.
    In the photo she took I imagined that’s what I’d look like when I die. And I swear I know it’s true. But add in all the detail and the waiting waiting waiting we do and small favors like making a ferry seem like big miracles to us.

    Glad I found you.

    Liked by 1 person

      1. Well Thank you and let’s keep in touch, because there’s few things more saddening than our lives going on separated by space and never connecting especially with the needs created by something so ugly to create something so beautiful. Tomorrow’s Taxol day. Second cycle. BLAH. Not looking forward to it. My brain goes to mush for two days just from the benedryl and steroids alone so writing goes too slowly, but I can read. And that’d be about all I have patience for so I go catch up on my blog buds, and I look forward to reading more. 💕

        Liked by 1 person

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