Wednesday, December 16, 2015

Oh, I hate the IV infusion

Let me start with the good things, which are significant and important:

  • In the "port place" at MUSC's Hollings Cancer Center, nurses kindly fill me up with all kinds of useful medicine.  They're really nice people, consistently, and I know they are doing everything they can to help me.
  • The chemo is working, as I learned last week when I visited my team at the Duke University hospital.
  • I only have to have the IV infusion every other week.
  • I like the socks that my mom got me.
Lovely socks, not too cold for Charleston.

Now, onto what I'm here to write about.  How I hate it here in the hospital.  I've been here once every other week for several months, and it's gotten worse and worse in my feelings about this experience.  It's not that I'm really experiencing awful panic attacks or severe pain--not at all.  But here are things that make me anxious, angry, out of control.
  • This places smell just like the places I've encountered elsewhere in this hospital.  More than anything it smells like baby Maybelle when she was in the NICU, also at MUSC.  She was born, and then she was in the NICU for a full week.  A full week.  You'd have to wash your hands before you entered the room, so every time--multiple times every day--I'd have to scrub my hands with the soap that smells exactly like the smell here.  It makes my heart hurt every time I smell that soap.  I hate it.  I hate Maybelle having to be there in her first seven days of life, only because they were concerned that she had Down syndrome.  There wasn't anything other than that.  After we discovered her fantastic pediatrician, he said that what she needed was time outside every day.
  • Damn it.
  • It can take forever for the medicine to be delivered.  Once in the last month, it took two hours for them to even bring the medicine for the IV infusion.  I sat in the chair, plugged into everything, but doing nothing.  For an extra two hours.
  • That sucks.
  • I'm sitting here right now, getting some prophylactic medication for diarrhea/nausea/agony -- that's a good thing, actually, not one that I hate -- and the nurse just discovered that it's actually going to take longer than she thought, because the doctor wanted to see how much I weigh.  I was 139 pounds a few weeks ago.  Now I'm back at 149--which is very good, because it means I'm moving back to the normal weight of my body (155 since I was in grad school).  She discovered that we're going to have to wait some more, because my weight change required a revision in my dosage.  
  • What the hell!  
  • Now I'm home.  I'm exhausted--falling asleep--but I wish I could take a shower and throw all my clothes in the laundry.  I'm too tired for that right now, but the smell of my clothing is hard to take when the clothing is so near to me.  The smell is the first item on my list of things I hate about IV infusion.  
  • Breaking my heart sometimes.

7 comments:

  1. I hate that they make you wait. I hate that you have to smell those awful smells. I hate that this sucks so much. I'm glad your weight is returning to normal. You are wonderful. Thinking of you continually, with lots of love. <3 Nicky

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  2. Alison Piepmeier... keeping you and all of yours in thought and heart... will follow your blog... I appreciate your candor and expression... Alison, I am so sorry for shitty things you have to go through... I wish I could take your place for a while, give you a break... stay strong... thoughts and prayers... Ray...

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  3. I do think you have a bit of the old PTSD -- from that time with Maybelle! And no wonder you hate it there -- I can only imagine how it all comes back even as you yourself have to endure such horrible things. After spending so much time in hospitals with Sophie, I just can't stand them but if I could, I'd come and sit with you and perhaps waft essential oils under your nose. I'd also bring some Christmas donuts.

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    1. The Ralph's Donuts do offer some love with my family, in addition to the best donut ever.

      And you're right about the PTSD. I've got it, and it runs in the family.

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  4. I love that the IVs are working for you (& I love the socks) but that hospital smell IS triggering and the waiting is fucked up. Sending love, k.

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