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Chemo and a Fork

6/20/2015

13 Comments

 
     Way back in February, we had Radiation 101.  This is Chemo 101 - the details of what it's like in the early going.  As for the fork mentioned in the title, I also promised you the details of what it's like to have an ostomy, which will be offered in "fork-in-the-road" format, so you don't have to accidentally read the details.  Nope! The details require a deliberate click if you want the various ins and outs with no holds barred.
     But first the chemo; I was pleased at my first bi-weekly check-up with the doctor to find that while some effects are cumulative, some are not.  Nausea is one of those that doesn't seem to be cumulative.  In other words, what I felt the first time or two is generally what I'll feel from here on out.  I get a loading dose of anti-nausea meds with my IV and then I have pills I can take as needed afterwards.  I've found that I just want to preemptively take those pills starting a day after the infusion.  My infusions are on Monday with the pump worn through Wednesday.  I take the nausea pills starting Tuesday and continue them through Thursday and that seems to have it whooped.  I did NOT do this the first time, rather I waited until I felt nauseous.  Let me be clear on this should you ever be in this unfortunate position:

Do not wait to exchange polite "hellos" with nausea and try to gauge its intent to cause you harm.  Instead, shoot nausea in the back from behind a tree in  guerrilla fashion using all your available weaponry way before nausea even knows you're in the vicinity.

     Nausea is a tricky little devil.  I had a nurse at MD Anderson tell me very clearly that the feeling of "just not being hungry" is early nausea and that's the time to take action.  Not when the smell of your family heating up leftovers for dinner makes you want to run and call Ralph on the big white telephone.  That's too late, she said.  Well, she didn't say the part about Ralph, but the rest is true.  Take the pills, she said; do not try to tough it out, she said.  Here's a fun little quiz for those that know me.
When faced with no appetite, will Barb:
  1. recognize the early signs of nausea and take her meds as advised by the medical profession, or
  2. think she's pretty tough stuff and decide she doesn't need any extra meds in her system at this juncture?
Ding! Ding! Ding!  If you answered "1," you're obviously smarter than me.  I of course, answered "2" and got what I deserved.  To my credit, I learned my lesson and am now eating my pills like an appetizer before dinner.  And just like an appetizer, I find that I'm not exactly hungry for my subsequent dinner, but I eat the entree anyways because I ordered it, it tastes good, and I'm a Downey.  We eat.  Then I'm overly full until the next mealtime and we do it all over again.  "Yes, I think I'll start with the compazine, then for my entree, I'll have the reheated meatloaf and green beans."
     Did you catch the part above about compazine?  Yes, that's the name of the anti-nausea meds I can take as needed.  Being the "give me all the information you've got" type, I read up on it.  Here's a little snippet about what it's used for:
Nausea, Schizophrenia, Psychosis, Status Migrainosis, Dementia, Anxiety Disorder
Wowzer!  Sure the first one is applicable, but the rest of those on the list are some pretty major happenings.  Do you see why taking this little pill gave me pause???  So, if you see me on a Tuesday-Thursday of chemo week (That sounds like Shark Week.  All week long on the Barb Channel, it's Chemo Week!) and I seem a little, um, different, don't worry.  It's just that my schizophrenia and psychotic tendencies are temporarily under control.
     Well, now that we've covered nausea ad nauseum, we'll move on to the other chemo associated happenings.  While nausea is not cumulative, the rest of the effects are.  The big, bad wolf of these is neuropathy.  Recall your Latin & Greek Derivatives class and you'll realize this means nerve injury/death.  The cold sensitivity described in the great-chilled-meat-in-Wal-Mart-debacle (see previous post) was the early symptom.  That continued through the 2 week period between chemos, although it alleviated to occasional cold sensitivity if the contact with cold was prolonged.  In round 2, the cold sensitivity is back with a vengeance along with a new and interesting twist; if my hands get cold, they may refuse to follow instructions.  Me: "Open, hand, so I can set down this glass of ice water.  Hand?  Hand!"  Hand: "Sorry, did you say something?  I wasn't paying attention."  I tell, you, that is WIERD.  Oops, squiggly red line.  Try again.  ....that is WEIRD.  Red squiggle gone!  I always misspell "weird."  I have heard others say that this symptom manifested itself as just dropping whatever was being held because the hand went on strike.  My version seems a bit better.  But I can picture a cold meeting room and me shaking someone's hand and then not being able to let go of it.  Of course, they have to pry my hand loose, the cops get involved and it all goes downhill from there.  They jab a syringe full of comapzine in my thigh and I don't throw up on anyone and my dementia goes away, which makes my stint in jail a bit more bearable, if unfortunately more memorable.
     The good news is no numbness in the hands or feet yet.  That can be a deal breaker for the particular drug that causes that symptom (oxaliplatin) and I would rather not lose one of my weapons.  With my pathology report, I want all my guns a-blazing.  The final symptom thus far is some tiredness.  Well, sleeplessness followed by tiredness.  Before they start the chemo drugs IV, they preload me with the anti-nausea and steroids.  The first time, I'd had the surgical procedure and had pain pills, so sleeping was NOT a problem.  The 2nd round, I literally stayed up all Monday night.  I'm going to harness this next time.  Steroids make you feel like there's no limit to what you can accomplish.  Maybe I should finally tackle my disorganized and overstuffed closet.  Or maybe binge watch "Breaking Bad" on Netflix.  Yeah, I like that 2nd option.
     Now we've arrived at the promised fork in the road.  I'm going to tell those who're interested about ostomies.  The rest of you, I'll see you next time!
Picture
Take a trip down Ostomy Lane by clicking the fork.
13 Comments

Stage III of the Cancer Triathlon (and Barb is in the lead!)

6/1/2015

8 Comments

 
     Stage I: Chemo/radiation - Complete!  Stage II: Surgery - Complete!  Stage III: Chemo - On the Course!

     Joe and I reported to the Manhattan Surgical Hospital at the (for me, at least) un-Godly hour of 7:15 am.  With the drive and the required pre-procedure shower, I had to get up very early.  I am not, nor have I ever been, a morning person.  The shower is required because: a) general surgical cleanliness, and 2) I won't be allowed another one for 48 hours (eh, no big deal).  They started me off with Fentanyl, brand name Sublimaze which was sheer brilliance in branding by the marketing department.  Left me totally aware but with my niggling headache totally obliterated, which meant 20 questions for the staff in the room.  That may have caused them to give me the 2nd drug a bit ahead of schedule, the Propanol, aka "The Michael Jackson Sleep Aid."  Out like a light immediately.  It was also very easy to wake up afterwards.  Poof, I'm awake!  Port placed with access (how the chemo folks get the drugs in) also in place.  After about an hour, they sent me on my way.
     Joe and I had time before chemo to go get me fed and caffeinated, both of which I really needed.  Then we headed to the Infusion Center, which I've already figured out is staffed with a special breed of nurse.  Actually, I've learned that all nurses are special, but the ones that deal with cancer patients are a special all to themselves, and I for one am extremely grateful.  I've also discovered that my imperfect but big and goofy grin are going to be needed here too, just like at MD Anderson.  Lots of folks who are legitimately feeling pretty down and out at this place.  By the time this is over, I may be actually good at this smiling thing.  They hooked me up and primed the pump with steroids and an anti-nausea drug.  Once that was on board, they hit me with 2 of the drugs of my 3 drug regimen.
     The first is oxaliplatin, and it's the one that is most likely to cause me problems that might shorten/change what they'll give me.  It causes nerve issues and neuropathy (damage to the nerves that can be permanent).  The primary short term issue is cold sensitivity, so I'm glad for the warm weather.  My (unfortunate for his sake) guide on the journey who went through a nearly identical situation 3 years ago told me about drinking a cold beverage.  He likened it to swallowing broken glass.  Ouch.  Needless to say, he never did that again!  I discovered afterwards at the grocery store that they aren't kidding.  I was holding a package from the refrigerated section, minding my own dang business, when I had the sensation that I was being stabbed all over the fingers in a multitude of places.  Took me several beats to put 2 & 2 together before I finally realized it was the cold sensitivity.  I dropped the Jimmy Dean pork sausage like a hot (cold?) potato and made an immediate retreat to the bread aisle, where it was warm but I could still maintain visual with my target.  I called in backup (the daughters were in another area of the store) and had them get the now dangerous sausage for me.  Looks like I will now be the crazy lady wearing gloves in the grocery store, in the kitchen and who knows where else, all the while sipping warm beverages on hot Kansas summer days.  I'll figure out some way to have fun with this.  I may go full out and start muttering to myself, jumping at nothing, and generally seeing if someone will call security or the police.  I may wait until I have a daughter or friend with me so they can join my little fun.  Heh, heh, heh!
     OK, back on track.  After the 2 drugs have infused over the course of about 2 hours, they give me a loading dose of a 3rd drug, the interestingly designated 5-FU, the name of which I believe could be considered "an attractive nuisance" for someone with a brain like mine.  After they do that, they disconnect the IV pump and hook me up to a portable pump that dribbles in more 5-FU over the course of the next 2 days.
     Can't wait to see how this works when trying to sleep.  It's already interesting trying to deal with it along with my other device, the ostomy.

Ooh! Ooh! Ooh!  I forgot to tell you about the Save the Anus campaign!

     I've been telling you all all along (read it again; the 2 "alls" works) you can ask me anything about anything. No sacred cows here.  So after working their way into it, someone got up the nerve to ask me if my ostomy was permanent or temporary.  I can't believe I forgot to tell you guys this!  Especially after the extensive fashion-wear campaign in support of my anus (Sue, Sue & Karen!).  I am happy to report MISSION ACCOMPLISHED!  I am still the proud owner of  that much maligned but very important piece of my anatomy.
Picture
The pump, my stylish fanny pack (if my girls didn't think I was cool enough before, they do now!), and the thin tube that leads to the port, located below my collar bone which accesses my vena cava, right above my heart. Apparently the way to this girl's heart is through her port!
     I know we're getting dangerously close to needing one of those forks in the road that lets the "too much information" types off the hook, and I'll get to that in another post.  It'll be the one that tells you all the really interesting stuff about ostomies.  And it is interesting!  I've always thought the human body was this beautiful, intricate and amazingly designed gift.  Once you get over the ick-factor, that beautiful, intricate and amazing concept applies to your digestive tract too.  It really is cool.  But that's for another post.  Stay tuned.
     Where the heck were we?  Oh, yeah.  I've got a pump full of 5-FU.  I get the pump pulled Wednesday, and then the girls and I hop into the truck, trailer and camper and head to a our state Jr. Angus show.  I can't wait!  Back to the normal stuff, and catching up with another special group of folks who back in January, auctioned off one of the Save the Anus shirts to raise over $2000 for the KS Angus Auxiliary, our group that provides educational and scholarship opportunities for our Jr. members.  Looking very much forward to seeing everyone who ponied up, along with the "drivers" of the auction, the Dickersons, Shipmans and Hagers.  These folks very kindly yet effectively strong armed a group of 20+ other friends in a beautiful and touching gesture of support for the cause AND the Auxiliary.  See you all soon.  :-)
     And for the ever larger circle of friends, see you all soon too I hope.  I'll be the one huffing and puffing away on the last leg of the Cancer Tri.  The finish line is in sight, and I'm counting on all of you to push, pull, cheer, kick and cajole me across that finish line!  I know I can count on you - you've never let me down!
8 Comments

    Barb Downey

    On Dec. 5, 2014, I was diagnosed with rectal cancer. And that's where we start. If you're here for the first time, you'll have to read from the bottom (no pun intended!) up. Go to Dec 2014 and scroll to the bottom of the page...

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Downey Ranch, Inc.
Joe Carpenter & Barb Downey
37929 Wabaunsee Rd.
Wamego, KS  66547

(785) 456-8160 - Ranch
(785) 556-8160 - Barb mobile
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