First Chemo learning curve: oof, Expectations vs Reality

awsmGirl

My first Chemo was on TH-6/2.  It's TAC (taxotere, adriamycin, and... uhhh, lol, i dont have my notes!  whatever the C is! i'll edit/comment below if it occurs to me).

Expectations: Thursday evening would be okay: tired, but mostly functional.  On Friday, i'd start to have symptoms of real fatigue, some pain, and i'd have to get my Neulasta shot.

Reality: driving home, i was hit with waves of motion sickness, and kept feeling worse, with heavy nausea.  I had misplaced my Compazine anti-nausea meds (let me share with you The 7 P's: Proper Prior Planning Prevents P!$$-Poor Performance!  I had not planned or prepped well, in this one item and oh-boy.), and my partner Joe called for a new Rx.  This, which melted on the tongue, ignited the VomitStorm.  Label said "couldnt keep one down for >30min?  Take another!"  Took another, vomited MORE.  Puked-out and dehydrated, i crashed.

So Friday,

i had to go in pre-Neulasta for a hydration session.  Felt MUCH better, got my shot, headed out.

Expectation:  Ok, so now hydrated, i'd be ready for the fatigue, pain, and the possibility of bone-pain from the Neulasta.  I had painkillers, i knew i had to hydrate, and i'd be mostly-okay by Monday (Chemo + 4days).

Reality:  i still couldnt hydrate up to benchmarks, and Sunday the bone-pain hit, causing my femurs/thighs and my hip-joints to ache something wonderful.  Wow, hurt.  Another half-percoset each day, and a "Magic Brownie" from a friend that worked wonders! The whole medical marijuana thing may still be largely anecdotal due to stupid ideas of law enforcement and its thwarting of valid research, but i am here to tell you that i got great relief from nausea and pain thereby (pardon my soapbox).  Also, feeling my guts starting to slow down/bind up, due to lack of liquids, the effects of the meds.

So Monday,

back again for MORE hydration! They recommended that i get some stool softeners. Felt better, started taking a laxative. Tuesday, felt very quiet but not the super-beatness of the weekend, the bone pain eased off, and i was hydrating better.  Wow, did the laxative work: cleaned OUT.

Expectation: it's now Wednesday (Chemo + 6days), and "i'm better!"  Went for an eye exam, drove to visit my mom and sister for the evening, planning to head on to visit my sons the next day.

Reality: I experienced a lot of shortness of breath, making walking from car-to-shop a challenge requiring a few minutes' sit-down (okay when still, but moving was exhausting, gasp-inducing).  Anemia?  Need to increase hydration?  

Turns out that it was the onset of Neutropenic Fever, as my white blood cells plummeted.  The Neulasta didn't kick in as quickly or as strongly as had been expected, so here i was heading into another decline.  And then my stripped-empty guts started in with severe, painful cramping!  I was on my **** in bed from bedtime Wednesday, all through Thursday.  Telling myself, "this will be ok, this is just a bump" -- yeaaaah, No.  

Thursday night (Chemo + 1week), i am on the phone with the on-call Onc: do i need to come into the ER?  He assures me that if i feel i can get through the night, coming in first thing for MORE hydration/an assessment, will be Okay.  So i tough it out.  At 3am, my sister brought me a cup of ice chips: life-saving, glorious.

Friday morning (Chemo + 8days) finds me in 3rd-day hair, my manky sweated PJs, and a fluffy robe wth slippers (vain as i am about "get up, dress up, show up, never give up," i did not give a HoneyBadger's F*ck at that point.  Couldn't even pretend to be my usual chipper self), getting rolled into the Chemo Infusion Room -- where they take one look at me entering the waiting room and whisk me past the other patients, cuz man my busted **** is Bad Advertising, lol...  My fave Chemo nurse Quinnie takes one look at me and says "Oh, girlfriend..."

And in walks my partner Joe! 

The brevity and dire content of my texts that evening and morning had really concerned him and the fact that i was again back in the hospital, brought him out to join me.  My face must've looked like the saddest lil kid on Christmas when i saw him: I smiled like crazy but was still beatness personifed, lol...  He brought water-ice, the dear man.

They got me hooked up to hydrate: I was Beef-Jerky Girl, soooo dehydrated, i took 2.5Liters Friday!  And antibiotics, and painkillers/muscle relaxants, and i think some other stuff, but frankly i was just rolling with it and glad to be under care.  They took a blood draw.  Took my temperature: 99°, which surprised me as i knew it had been up and down, and expected higher.  Sure enough an hour later, i was at 102°. 

"We're checking you in."

Apparently, according to Wikipedia, a normal white blood cell count is between 4 and 11, or 4,000–11,000 white blood cells per microliter of blood.  I was at .3 

Ended up staying in the hospital while they grew blood cultures to make sure that my guts weren't fermenting a bacterial infection, and while we waited for my white blood cell count to go back up into safe ranges.  

That took the whole weekend, until Monday, or Chemo + 11days.  

I am blessed in that my hospital (Einstein Montgomery in E.Norriton PA, in the NW Philly burbs), is a lovely facility, less than 4 years old, full of light and wonderful competent people, with private rooms overlooking preserved farmlands and the rolling hills of the Valley Forge region.  It is state of the art in every regard, and once i started bouncing back, with being hydrated, medicated, my immediate discomforts ameliorated, i kinda had a relaxing, quiet and restorative"spa weekend"!  I slept, ate lightly of well-prepared tasty foods, puttered online, enjoyed the view and just a little company when my Mom & sister visited on Saturday, and my bestie Ellie on Sunday afternoon.  Joe joined me for a while each evening.

Checked out on Monday, and went back to Mom's for the overnight.  

Expectation: All better now!  Clear sailing!

Reality:  Once at Mom's, i slept almost 3½ hours in the afternoon, woke up for supper and an hour of "Outlander," then slept again til Tuesday.  On Tuesday i returned to Joe's, and slept again for about 2½ hours in the afternoon.  We joined friends for a quiet outing in the evening, and came back early: in bed and asleep again by 9:30pm.

However, TODAY (Chemo + 13days), i feel GOOD!  

My energy level isn't fantabulous, but i am starting to accept/get used to that -- "the new normal."  i'll probably nap again thsi afternoon.  I awoke HUNGRY, for the first time in 2 weeks, have had grits with butter, some chicken breast, some fresh homemade salsa salad with tomatoes, onion, lime, cilantro, and chunks of avocado...  I feel clear-headed, truly feel like myself.

And this afternoon, Joe and i are going to check out our Floating Spot, where we carabiner our deluxe head-rested, cup-holdered tubes to a low-hanging tree and float-in-place on Summer Sunday afternoons: it is our little slice of Heaven.  What with the hubbub of the last 6-8 weeks since my Diagnosis, the floating-tubes are still in storage and i will be collecting them on Thursday, but we'll walk around, maybe do a little wading and see the Crawdads...  I've got the All Clear to float, with my Port Installation site being well-healed, but i still intend to slather it with antibiotic cream and a waterproof bandage, and to keep it as dry as i possibly can, for as long as i can.  That's my Life-Line and i am taking NO chances of any infection!!!

* * *

so here i am, at just a half-day shy of 14days/2weeks after my very first round of Chemo.  

Expectations and Realities are (surprise!) not at all the same, but it has been, overall, a positive, learning experience, despite getting my butt kicked and feeling like hell for a while.  My Onc and i met before I checked-out Monday, and framed a Plan of Action for Round Two that includes a bit of steroids going in, to boost the Neulasta, as well as some gentler laxatives so we don't get the bind/purge thing that busted my guts.  He's going to tweak the actual amounts of the chemical mix, to still get good effect but maybe not kick my **** quite so hard.  We are assuming that i will be hydrating by drip for at least the 2 days following Chemo, and the whole process will be more closely monitored by them, and by me, since i/we now have some better context and experience as to how I respond.  

I know it's not going to be a picnic, it's not going to actually be any easier.  I have heard that one can add a day-or-two to recovery for each subsequent cycle, that one will get more tired for longer, and i am working on understanding and responding to these "new normals" as they will inevitably arise.  It's my challenge to, for the run of my Chemo over the next several months, to relinquish with some sensibility and grace, my usual dynamism and Go-Go-Go, for the sake of best beating this beast and healing.

* * *

I hope that what i share will entertain and enlighten, helping others to understand the process that they may face in their experience.  I am still casting about for a way in which i can pay back/pay forward my experiences as a Warrior against Breast Cancer, so as to benefit others: this to me is a vital part of my Journey.  Writing is a start.

~awsmGirl

 

 

 

 

peony

awwww

You poor thing! I'm so sorry you're having such a hard time with the chemo. And so early in the treatment (smh). Once they get your meds tweaked things should be better. Stay strong!

Puffin2014

paying it forward

Sounds like your doctor has a good plan for the next round. Remember, the "paying it forward" part does NOT have to be done DURING treatment. You are entitled to focus on yourself now, take lots of naps, eat anything that is appealing. You can always do the Paying it Forward in the future when you're feeling better.

Teach76

Predicting side effects

The one thing I recall about my TC chemo was the predictability of the side effects through each treatment.  Now that you know you have issues with nausea - ask if you are getting anti-nausea with your premed a at the session, or ask if you should take the meds before you come.  Hydration also seems to be an issue for you - it's summer!  Enjoy those Popsicles and get plenty of water.  I know there are folks who just don't like water - in that case, be careful of your caffeinated drinks that can be draining you of fluid.  Also keep in mind that the constipation is directly related to the dehydration - another reason to start liking that water bottle right next to you.

thanks for your comprehensive documentation.  I am sure it will help others as they continue through their own treatments.

     As for me, one week of radiation down!  There is a light at the end of that tunnel!  Keep moving forward!

Blessings!

Kathy

camul

sounds like a rough go, glad he took notes.

Once steroids and anti nausea were added, and I took the Clariton about an hour before the Neulesta shots, I tolerated the chemo better.  My first chemo of A/C, I woke up laying half naked on the cold tile floor in front of the commode to my son waking me, thinking I didn't make it thru the night.  He helped me into bed, where I remained with a trash can next to me.  My ins only allowed 8 anti nausea for 1 year, that was 2002.  

This time I learned a medical gummy bear, or 1/4 of a little chocolate square did wonders.  I also learned some of the chemo I had no nausea or big side effects, others were horrible.

Hope round two is better for you!