Breathe In, Breathe Out, Move On

Sage advice, Mr. Buffett.

We had a nice Christmas, but the last few weeks have felt like that wad of crap you reach after digging through 50 layers of crud.  I feel like we’ve been in consolidation for eternity and we aren’t even halfway there yet.

Kate stopped eating in week 3 of the last cycle (so, just about 2 weeks ago.) That has been her trend in week 3 with low ANCs and the cumulative effects of two weeks of chemo, but this last time we found ourselves celebrating when she ate 2 bites of egg & 1/4 smoothie. IN ONE DAY. Repeatedly.  Then, last Monday, we learned she’d lost 2 lbs. in one week. But, she was still of average weight, so nothing was too alarming for the doctors.  She was still handling everything well.  Well enough so that they actually increased her dosage of her oral chemo (6MP) to 120% from 103%.  (Again, nothing will shorten her expected treatment time; this just gives us more ammo to fight the cancer and keep it AWAY.)

We started cycle 4 last Monday and the week that followed just sucked. Chemo! Steroids! Nausea! Exhaustion! She seemed to have a particularly tough time with steroids that week and the vincristine chemo made it even more difficult for her to walk & move around than normal.  Even days after the steroids began, she still wasn’t eating so we knew we had to give the Marinol a try. Well….there’s a reason that doctors are hesitant to give it to little toddlers. That shit is legit, but not in the good ways we hoped. We pictured this euphoric, Dorito’s-munching, giggling happy girl who didn’t have a care in the world.  I expected to have my very own miniature Jeff Spicoli to entertain me while she marveled at the double rainbows and instead, we got a frighteningly doped-up baby who started forgetting her alphabet & had trouble picking up a crayon mere minutes after taking the stuff.  Dose after dose for days we just felt like we were poisoning her and with none of the benefits like appetite and happiness. I ended our little trial run before it actually began.

Past cycles have shown us that by Thursday, she would be starting to be more like herself but Saturday came and went and my Kate was nowhere to be found. FINALLY on Sunday she woke up herself, happy, eating and FUNNY. Music to my broken-hearted ears.  Her foods of choice this steroid pulse were chicken noodle soup (but NO chicken, mommy!  Only broff and noooooodles, mmmkaaay?  And I eat it with my HANDS mommy!) and cinnamon rolls.  We went through 5 canisters of cinnamon rolls this week.  No, she didn’t eat every single bite of those, but dammit, that means I did and my waistline does NOT appreciate it.  (Why can’t she crave carrots & kale??)

We learned this week that she had gained some weight, that her ANC was up (both expected) but that Marinol can take a week or two before the bad side effects subside and the good take over.  We left the clinic with a plan to cut the two doses per day down to one and see if it helps.  So far this week, she’s doing well and is eating.  The dopey effect has been much better without so much other crap in her system.  It’s hard to say if it’s the Marinol helping her appetite or the lasting steroids in her system.  I’ll consider it a success if it makes her eat NEXT week.

5 more days of oral chemo, more Oncaspar next week and we  start cycle 5 on the 21st.  None of this is easy. But we breathe in, breathe out, move on.

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