Swallowing Glass and Piercing Needles

I wanted to write last night, but two days of horrible insomnia finally caught up with me and I crashed at 9 pm.  Of course, I woke up at 3. am. and now can’t fall back asleep.  People have called and texted, curious to know how Round 2 is treating me.  The title of this post summarizes the highlights from the last couple days, although I expect more once I unhook myself from the 5-FU later today.  (I love that one of my chemo drugs is called “FU” — how appropriate.)  Last time, my nausea and fatigue peaked on Thursday.  I would expect the same this time.

Even before I left the NYU Cancer Center, swallowing room temperature water felt like swallowing glass and the first bite of a graham cracker (as with any food) set off the nerves up and down my jaws.  That night, when I grasped a carton of milk, a thousand needles pierced my fingers.  Shortly afterwards, both my arms started tingling.  Neuropathy, the most common side effect of Oxaliplatin, is here, and let me tell you folks, it’s some weird shit.  Unlike nausea, there are no medicines to combat neuropathy; one just has to avoid cold as much as possible (including things like stainless steel handles and faucets).  So I dug out my gloves and socks in the middle of August and go everywhere with a sweater now to fend off air conditioning.  Neuropathy can be permanent so it is a side effect that is monitored very closely, and oxaliplatin dosages may be lowered accordingly.  The tingling in the arms disappeared within a few hours and the rest was already subsiding within 24 hours.

The increase in anti-nausea medication this round thus far seems to be doing the trick.  Appetite is decent.  However, I expect this to go downhill a bit in the next couple days as the anit-nausea medicine starts to wear off and the side effects from the FU kick in.  However, the increased anti-nausea medicine has brought on constipation and so I’m sitting here sipping a glass of prune juice.  Constipation brings back some bad memories of the days right before my diagnosis.  (Note: as with everything else, don’t expect me to be shy about discussing bowel movements.  This is after all colon cancer I’m dealing with.  I bet our country would be a lot healthier if we as a society weren’t so embarrassed to discuss our poop.)

Unlike last time, neither the FU pump nor the side effects have prevented me thus far from being out and about.  People stare at my blue nylon bag, the plastic tubing coming out of it and the bandage over my port.  That’s okay people — stare away.  I keep expecting the cops to stop me because of my suspicious bag since my infusion nurse told me this had happened to another patient.  I’m going to ask Mia and Belle to decorate my chemo bag with cute stickers; maybe that will make me look less like a terrorist.

The day after the infusion (i.e. yesterday), I went to the gym, had my first acupuncture session and met my support group at Gilda’s Club for the first time.  By the way, don’t believe people when they say that acupuncture doesn’t hurt.  It does hurt but it really felt good afterwards so I’ll be going back.  I’m throwing everything I have into this war — working out, eating well, blogging, acupuncture, massage and a support group.  I start psychotherapy next week and am investigating meditation options now.  I’m adhering to one of my life principles — do whatever you can that is within your control and let everything else go.  I can’t control whether the chemo will work, but I am doing everything within my power to create the ideal environment for it to work.

Days like yesterday prove that fighting cancer can be a full time job.  I am so grateful to work for a firm that is so understanding and supportive in allowing me to take the time to fight this war to the best of my ability.

I am also so so grateful for all the messages of support from all of you from all over the world, from my dearest friends and family, from long-ago friends with whom I’ve fallen out of touch and even from people I’ve never met.  There are too many for me to individually respond to, although I try.  Know that I read and reread every message and comment, especially at night when the insomnia sets in.  Was it Tyrion Lannister or Varys, the eunuch, who said in Game of Thrones, “The Night is full of terrors”?  True enough.  Your words help fight off the terrors in the night.  Thank you.

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4 Comments (+add yours?)

  1. Cherrel
    Aug 28, 2013 @ 06:41:26

    I honestly believe, that if more people were open about things like pooping and sex, the world would be a greater place. 🙂

    I am glad to read that have reintroduced animal proteins back into your diet, as well prune juice. I hope everything comes out more smoothly, soon!

    And as Daenerys Targaryen has been known to scream, “Where are my dragons?” Julie, if you need a dragon, just yell for me. I’ll be your suport dragon!

    Reply

  2. Dana
    Aug 28, 2013 @ 06:50:56

    I agree with you, talking about any body functions, should be a conversation that can be had between family members and friends. After all that is the stuff that few of us know about. Hey if you had this happened and, oh, me too, then we can talk about it. Girl, you are a FIGHTER!, I love your spirit. Prayers all day every day!

    Reply

  3. Ginger
    Aug 28, 2013 @ 08:25:10

    Hey Julie! I got your blog link from manuel. I am reading your blog updates with tears in my eyes remembering the night I was your nurse and that talk I had with you and your husband. I am glad to see you are still such a trooper through all of this. You and your family are in my thoughts and prayers.

    Reply

    • julielyyip
      Aug 29, 2013 @ 14:02:12

      Ginger! How amazing that through the wonders of the internet we are reconnected. I think of you and the other incredible people at UCLA often. You all were the light in an otherwise very dark time and will forever be part of my heart. Please make sure that the entire staff knows that and share my blog with everyone there.

      Reply

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