Tag: Oxaliplatin

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Next up: round 4

Let’s talk about chemo. 

I get a lot of questions about how my chemo works, and since I just completed my 3rd cycle, and tomorrow begin my 4th, I thought I would explain how my customized protocol happens.  I say this out loud as an answer to a question about 5 times a day.  So, if you ask me, I’ll know you don’t read my blog, or that you stink at reading comprehension.  Just kidding.  I know, I can barely keep track of it all myself and I’m the one doing it, so if you forget, it’s ok.  I don’t mind. 

The cycle starts on Monday.  Kevin and I go to the UPMC Cancer Center in Monroeville.  We meet with my oncologist, Dr. Mehta.  He is on the young side, and the right mix of serious, funny and hopeful.  I trust him and look forward to seeing him.  He asks how I’m doing, we go over any new side effects.  This time, at tomorrow’s visit we will be having a major discussion about my nausea from last time.  I have a folder’s worth of research in my head and my expectation is that he will be very responsive and helpful.  We need to get this nausea under control. 

After we meet with him, they draw blood to make sure my levels are high enough to withstand chemo.  This is my 12th round of chemo in my life (8 last time plus the three I’ve had) and I have always been ok.  However, I closely review my own blood work and I notice a few levels that are concerningly low. We have discussed this and Dr. Mehta has a close eye on them.  After they take my blood, I go back to the room and pick a chair.  The room is open, with waist high walls and partitions.  I try to get a chair in a sectioned off area – depending on who my companion is, we can be a bit rowdy, and many chemo patients nod off to sleep during treatment.  Kevin stays with me until I get hooked up to my pre-meds and then he goes off to work.  Usually my mom comes, but if she is otherwise engaged, like watching Cass if she has the day off school, different friends fill in as chemo companion and chauffeur. 

The pre meds are dispensed via IV.  They include fluids for hydration, (basically everyone in chemo is dehydrated.  Want to be a pal?  Offer me hydrating beverages whenever you see me) steroids, (they help your body deal with the side effects) and anti-nausea medication.  This takes about an hour. 

Then, they change the bags and bring out the chemo drugs.  Oxaliplatin is the main drug for my type of cancer.  It’s side effects are primarily nausea, fatigue, hair loss and cold sensitivity and neuropathy.  This means that for a few days I can’t touch or drink cold things – it causes a seriously unpleasant sensation.  To the point that even when that effect has worn off, I get anxious, worrying that touching or drinking something cool/cold will hurt me.  I seem to be experiencing some hair loss this time.  I am losing quite a bit in the shower when I wash my hair.  I am thankful that I have a lot of hair, because it will hopefully be a while before it’s showing and I feel like I have to do something about it.  (Head shaving party?!)  It’s possible it will just thin some, so I’m not jumping the gun on this one.  But I’m watching vigilantly, lest I be that in denial cancer patient, walking around with patchy mange.  Also?  Why my head hair??  I notice my leg hair hasn’t exactly taken a vacation.  Whatever, body. 

Vectibix is another chemo drug administered via IV.  This drug causes a terrible rash.  I seem to be getting it mildly on my face and chest, but it’s primarily on my scalp.  It itches and is a bit painful.  So far, not anything I can’t ignore, but I wonder how much worse it will get.  It will be really awesome when I have to shave my head and we can then see it’s covered in a horrible rash.   Someone, please start scoping out wigs.  Something with bangs, perhaps?

Finally, we have good old 5-FU.  I hate this drug.  FU indeed.  They give me a bolus which is a syringe of it, so it comes on hard and fast, and then they hook me up to the Wonder Woman fanny pack.  I cart this large and in charge pack around everywhere I go for 46 hours following hook-up.  It’s cumbersome and makes a clicking noise about every 30 seconds.  It is always a welcome relief to get it disconnected.  But on Wednesday, when I’m disconnected, that is when the side effects really start getting bad.  Nausea, fatigue, digestive issues, heartburn.  It’s not usually all of those, but those are the ones that have given me the most trouble.  They last well into the weekend.  Sunday is usually the day that things start looking up. 

This past time was pretty rough.  The nausea really gave me a hard time.  I have a game plan for dealing with it this time, so hopefully we can get in front of it and head it off for at least a while.  If I could get one or two more days of feeling ok before the really difficult days set in, I would be very grateful. 

Generally, with chemo, the drugs have a compound effect, meaning the side effects they cause get worse each time.  But sometimes, certain effects, your body has a way of adjusting to them and they get better.  I’m hoping and praying that we don’t have all of these side effects in increasing levels each time.  But I also know that whatever comes, I am capable of dealing with it.  Prayer, thankfulness, attentive medical staff, and unflagging support, assistance and encouragement from #teamjessi is all critical and effective.  These are the tools by which cancer and chemo are overcome.   

My attitude is currently ok.  I’m having a little anxiety and discouragement facing tomorrow.  I have some prayer and some other attitude adjustment activities on the schedule for today.  Each time, so far, I have been able to rally, able to see the hope, see the need to hold my head up high, and face it square on, get down to business and get it done.  Sometimes, it takes more effort.  Or more God. 

Knowing how much people care has this magical effect on me, too.  When it is clear that someone has thought about my current situation and reaches out and does something in an effort to help, it’s truly incredible and I have moments where I think that maybe one of the reasons I am going through this really difficult time is that I never would have understood the depths of care some of the people in my life have for me.  My mom, cooking up a storm two weeks ago so that I would have organic, healthy, but comforting meals all ready to go when I didn’t feel like cooking.  A friend continually asking me what I need and figuring out that a massage gift card was the sweetest gift I could have received.  Another friend who fights hellish traffic every Tuesday to bring my family a gourmet meal from another friend who has agreed to provide it each week as long as we need it.  A friend so kind, she supplied me with many needed facial products to combat the acne/rash.  A group of friends, most of whom I have never met in real life, chose Pittsburgh for their annual gathering – I assume partly because they are dying to see America’s Most Livable City!  But also partly because I’m here.  I can’t wait to see these ladies!  Friends checking in, praying daily, offering help with Cass – heartwarming, life giving.  

It doesn’t change anything about how tough it is to get through this.  But it makes all the difference.  It balances out the pain and the fear and the anxiety with love.  LOVE is bigger.       

 

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Holy suffering, Batman!

So, the past week? 
That sucked.  Really. 
First, we had Monday, the day of infusion.  I tend to feel great when I go to the clinic
because it’s been a while since they filled me with poison.  So I show up optimistic, energized, ready to
go.  The infusion was fine. 
For those not familiar with how the process works, I’ll give
you a quick run down.  I have a medi-port
device, named Portia, that is installed in my chest.  It is accessed by a big scary needle and
fluids can be administered through it and blood can be taken from
it.  It’s pretty nifty and saves you from
ruining your arm veins.  Upon arrival, I
am weighed, and vitals are taken.  I am
weighed each time because the volume of chemo you are given is based on your
weight.  Blood is taken and a couple of
quick tests are done while I am administered pre-meds – steroids, hydrating
fluids and anti-nausea medication.  This
takes about an hour.  Then I am hooked up
to Oxaliplatin and Vectabix, two chemo drugs that are given over several
hours.  At the end of that, I am given a
bolus (injection) of 5-FU (yes, it’s really called that) and then hooked up to
the Wonder Woman Power Pack (aka Fanny) that I wear home.  This contains more 5-FU which is pumped into me for 48 hours.        
During this time, at the cancer center, I visited with nurses I know, showed off
my latest Wonder Woman accessories, read, rested, watched funny YouTube videos.  I even did a conference call with my staff
via FaceTime.  Ah, technology.  After, Kevin and I had lunch at Panera, stopped at Old Navy to
buy some new “visiting jammies”  (it’s
important to have decent lounge-wear when people stop by often as people do
when one is ill.)  I went home, took it
easy, did a little catching up on work and felt mostly ok. 
Wobbly, but ok.  Wobbly is the
name I give to the feeling that sets in once chemo has been administered but
hasn’t yet unleashed its fury.   You feel like something is off, your brain isn’t
sharp, you feel slightly queasy and a little tired.  The next day and a half, I was mostly getting used
to lugging that fanny pack around. 
Tired, uncomfortable.  Then the
heartburn of an angry dragon set in.  This was a
new sensation – burning from my belly, literally up to my ears.  I looked it up and that’s a thing – burning all
the way up into your Eustachian tubes. 
Ugh. 
Wednesday I got unhooked from the Power Pack and was
administered more anti-nausea meds and a prescription for heavy duty heartburn
medication.  The heartburn
persisted.  I dragged myself into work on Thursday to attend our Day of Hope picnic.  Familiar faces and an event celebrating God
on the North Shore lifted my spirits even though I felt pretty low,
physically.  I felt like I was literally dragging myself around,
wondering if people could tell how I was only about 50% sure I wouldn’t vomit
right there in front of the crowd.  A
homeless man spoke to me as I passed by and said “Ma’am, you look like a
princess.”  I looked around to see if he was really talking to me, and when I confirmed that, I smiled and said to him very genuinely “Sir,
you have just made my day.” 
I came home and made dinner and the efforts of the day just wore me down.  Just as we sat down together, I got so sick I couldn’t eat it.  What a shame!  I had three bites of a delicious meal and my body just shut down.  This was very discouraging.  I went to bed and barely saw my family that day.  Emotionally, this was the hardest day.  Your little girl just wants to tell you about her day and you have no choice but to be alone in a dark room and just get through it.  Your exhausted husband has worked all day and now has to handle every aspect of the evening – clean up the kitchen, bath, math practice, lunches for the next day.  This is when sadness and “it’s not fair!” threatens to take hold of me.    
Friday, I’d agreed to attend an important meeting.  I truly relied on God to get me there,
through the meeting and home.  I was glad
I went, and so grateful to get home, put my non-visiting jammies on and just
settle into a weekend of rest. 
Unfortunately, Saturday, the heartburn upped its game.  My insides felt on fire.  Nothing touched it – believe me, I’ve tried
everything from prescription meds to kimchi (which is delicious, btw!) so save
your well intentioned “Have you tried ginger tea?” for someone who has
heartburn because they ate too much Vincent’s pizza.  This is the chemically induced destruction of
the upper portion of the digestive system. 
My doc is on the case, so we’ll hopefully figure it out, but mint leaves
and popcicles aren’t going to tame this dragon, my friends. 
Sunday, let’s just say I spent more time in the bathroom
than I did for my past two colonoscopy preps combined.  Man, I don’t know what hell was unleashed on
my tummy, but you could audibly hear it churning from across the room.  Because I’m stubborn and crazy, we decided to
go to the Science Center anyway.  I can
tell you where every bathroom on every floor is.  My apologies to anyone who was there Sunday.  We came home and I laid in agony while
watching The Devil Wears Prada.  I want
to be Meryl Streep in 30 years.  Or be
neighbors with her.  We would visit over
chai tea and talk about the most wonderful things, I just know it. 
The weekend was really miserable.  Many times I lifted my eyes heavenward and
said “A little help, here?”  No specific
answer came – just the truth that only what is needed is what comes and that
which is not needed stays away.  This is
needed.  Don’t know why.  But I don’t need to know.  To say we need to know is to say we know
better than our creator, and that just doesn’t make sense to me.  He knows. 
He has set me upon this path and is deeply aware of every
experience.  He uses all for my good.  So be it, and may I be grateful
throughout. 

Today, Monday.  I am a
new woman.  The storm has quieted.  The fire in my belly has reduced to a
smolder.  I am so thankful to be mostly
restored.  And I am grateful to be able
to say I leaned in to the Lord in search of wisdom and comfort, not away in
despondent bitterness.  As John Newton
says, (something to the effect of) if we’re going to the throne of grace where sits the King of Kings, the
Father of all creation,  in search of
comfort and relief and we aren’t getting it, we certainly aren’t going to get
it from staying away.                  
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Chemo Smackdown-O-Rama-Fest: Round 1

Morning of first chemo treatment.  Most people wear sweats.  I say, intimidate Stupid Cancer with fierce style.  It’s easier for me to stay upbeat and my usual charming self when I’m looking presentable.  Leopard print all the way.

We arrived at the treatment center and got hooked up via Mort the Port to an IV of pre-meds.  (Steroids and anti-nausea stuff.)  We then met with my doc, Dr. Mehta.  He gave us good news: my cancer has NOT spread.  They hadn’t assumed it had but its good to know concretely.  Also my blood work (white blood cells, etc. were all in normal ranges.)  **These are answers to prayer.**  When God answers our prayers so clearly – its worthy of a moment of our time and consideration.  We have to pause, acknowledge, give thanks.  He does not always answer with what we are looking for – sometimes the journey is longer than the one we planned for.  But sometimes we get a simple gift like this.  I am grateful.  I give thanks that this cancer hasn’t spiraled out of control.  There is an army in my body fighting it, and it’s doing an amazing job.  I’m thankful for my surgeon who did a difficult surgery well and removed what was visible.  Thank you, Lord for all of your provisions.  

So then we got hooked up to the real stuff.  Chemo.  Oxaliplatin is the big dog of chemo drugs that I’m taking.  So into Mort the Port it went.  It took about two hours.  It was uneventful.  During that time, I read funny texts from friends, watched videos on You Tube, ate some cheese and carrots and talked to Kevin.  They have a snack bar at the center.  It’s not very healthy which I think is weird.  A poor diet does not help in the cancer battle.  But I guess with chemo patients, whatever you can get down the hatch is good.  And sometimes that is Lance brand neon orange peanut butter crackers.  Blech. I tired to imagine how I could politely suggest some organic fruit or air popped non-GMO popcorn.  But…I want them to like me.  So I’ll bring my own snacks and Kevin can eat the cupcakes.
So they also gave me my oral pills.  I have to take five in the morning and five at night.  This drug is called Xeloda.  
Kevin meticulously filled my giant pill box for me.  He will almost certainly do this for me every week.  The fact is the man is significantly more responsible than I am in such matters.  That’s why he’s the precision baker and I’m the chef with full creative license.  Recipes, schmecipes.  So Kevin is the family pharmacist.
The infusion was complete and we left.  We were both hungry so we went to Mad Mex.  a friend’s response: did you really think Mexican was the best choice immediately following chemo?  Fair question.  First of all, I got black beans and rice and tofu in a dry tortilla so it wasn’t like I got the drippy, crazy meat-filled enchiladas.  I passed on the margaritas, too.  🙂  But I really haven’t felt super nauseous.  Just a little bit queasy.  So far, eating helps.  So bring on the tofu!
What I have had in terms of side effects in the past 24 hours have been with neuropathy/very high sensitivity to cold food/beverage and touching stuff that’s colder than room temp.  
The very bad thing that happened was when I took a huge swig of iced tea before I knew what would happen.  Awful. I felt like I drank Drano.  It scared me.  I had no idea what they meant when they said “cold sensitivity.”  It was pretty horrible.  Like trying to swallow a raisin that suddenly turned into a tiny porcupine.  All scratchy and spiky out of nowhere.  Also, strong tasting things like olives, vinegar and sharp cheeses do something weird to my mouth.  It feels like biting into a giant lemon.  That “sour” reflex is in overdrive somehow.
On the tactile front…touching something cold is like grabbing onto an electric fence.  It’s very strange to have your own body mess with you like that.  I’m so grateful to not be vomiting all day like some people do with chemo (fingers crossed on that one!)  But it’s weird and inconvenient to have to adjust what you eat, drink and touch.
Right now I’m feeling ok.  I’m a little bit apprehensive because I know that it gets worse before it gets better.  The last day has told me that I cannot predict what’s coming next and I don’t like that.  This may be the toughest one for me out of the 8 rounds, simply because its all a mystery.  Everything is fine and then my body betrays me.  I’ve spent 35 years in it.  It’s like if a good friend who has always been kind and dependable suddenly starts acting like a total bitch.  
So this is where we give ourselves a moment.  Acknowledge the difficulty.  Acknowledge the frustration.  Choose to accept it.  Then turn our thoughts and our hopes heaven-ward.  People say I’m strong.  I am.  It would be false humility to argue that.  I was raised to be strong.  I have experienced success that galvanizes my trust in my own abilities.  Whatever you’ve got, bring it.  I love a challenge and I plan to win.  It’s my job to get people to understand why they should give their hard earned dollars to help unemployed, homeless drug addicts.  I’m not selling sports cars to men in the midst of their mid-life crisis or pacifiers to desperate new moms.  Lets just say I’ve chosen a field where it’s not an easy sell.  A former supervisor once said about me “she could sell snow to the Eskimos.”  Well I’ve never tried.  But I would probably give it a shot.  
But I can’t do it all.  
I’ve gone as far as I can go on my own strength at the moment.  So “I lift my eyes up…up to the mountain.  Where does my help come from? My help comes from you – maker of heaven…creator of the earth.”  
So, I lean into God today.  Giving Him my anxieties and worries.  Believing He will provide whatever is needed at the most appropriate time.  Sometimes that comes in the form of a good test result, help from a loved one, a cheerful card, an unexpected moment of peace.