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. 
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

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.                  

Want to know what chemo is like?

Not every cancer patient gets the same chemo drugs.  Some people get one drug.  Some get four.  I get two.  Here’s how it goes down.
The morning of my treatment, I get up and start my two week cycle of oral chemo.  This drug has a few side effects including nausea, weakness, fatigue, muscle aches and headaches.  I get all of them to varying degrees. But, so far, none to the point of stopping me from getting through a normal day reasonably well.  

My husband, aka, my driver, chef, and wiper of tears on bad days, takes me to the cancer treatment center.

In Pittsburgh, there is an enormous, fancy, well funded cancer treatment center called Hillman. It’s got sculptures, fountains and free lunch. The place I go? Is not that. But it’s close to my house and I like my doctor, so I’m ok with a boring, clinical setting. We arrive and wait a bit in the waiting room. I always notice the people there. I am always the youngest and seem the least sick. I’m never sure how to feel about that. I’m tempted to feel a little sorry for myself because, geez, these people typically have 30 years on me at least. But on the other hand, I’m feeling good enough to take a shower and put on lipstick and earrings and wear boots that once, an elderly but sassy patient loudly pointed out were not worn by “nice girls back in her day.” So mostly I feel thankful that, at least so far, we don’t really need to use the “cancer patient only” parking spaces.

So we get called back and they take my vitals. They then access Mort the Port. Mort is located below my collarbone on my left side. He’s about the size of a peach pit and he makes a weird little bump. 

 Via Mort, they can draw blood and give me medication. They also have to flush him with saline, which makes my mouth taste like metal for some reason. It is weird and gross. They then give me my pre-meds which include some fluids, steroids and anti-nausea medication. About then I meet with my doctor who is about my age, Indian, friendly and funny. I like him a lot. So far we’ve only gotten good news from him, such as stellar blood work and so far no evidence of cancer cropping up in other places. So my meetings with him have been pleasant and positive. He says I’m a trouper and he is impressed with my staying active, working, etc.

Then I head to the treatment area. It’s a large room with about 10 chemo stations. A lot of the people there are pretty sick. But most have a companion (spouse or friend or relative) with them and everyone seems to stay pretty positive even if they are weak and not feeling well. They hook me up to my IV chemo, a drug that causes all kinds of weird side effects. But during the infusion time, nothing major happens. My mom arrives.  My husband goes to work.  We chat, play Scrabble.

I watch hilarious videos on You Tube.  Have silly text conversations.  Answer work emails.  This all takes about 3 hours. It’s afterward that things get weird.

Different types of cancer require different types of chemo. So mine may be different than someone with, say, breast cancer. Plus even the same drug may affect two people differently. So this is just what has happened to me so far. When I leave the center, I have to keep my hands and feet warm because the cold paralyzes them and makes it feel like they are being stung by a swarm of bees. And I cannot breathe in cool/cold air. If I do, my breathing becomes like someone who has just climbed 5 flights of stairs quickly. I’m out of breath and cannot “catch” it even though I am not at all over-exerted. The cold air paralyzes and causes spasms. It’s very weird. So I wear a scarf and keep it tight over my face. Mind you, it’s only been about 45 degrees so far. So, I’m sweating because I’m wearing gloves and warm socks and a scarf. It is very hard to explain to someone that you are both overheated and fearful of letting the cold get to you. People have a hard time understanding this, but I wouldn’t understand it either.

The cold sensitivity also includes food and drink. Can’t ingest anything cooler than room temperature. If I do, it feels like I’m swallowing tiny porcupines. This is tough because dehydration is a major risk with these medications and one can only drink so much hot tea.   But I’m becoming a bit of a tea snob.

Also, anything sour, sweet or pungent (like a sharp cheese) is off limits. It feels like I just took a giant swig of pure lemon juice. So my diet for a week or so is warm and bland. Which is fine, because I am also nauseous. Not like toilet-hugging, stomach flu nauseous. Just unsettled and unpleasant. Nothing sounds good except, say, crackers, macaroni and cheese, toast. You get the idea.

A new side effect this time around is muscle aches. I also got a flu shot (my first ever) so maybe it’s from that. But this is for the birds. I keep waiting for a magical fairy massage therapist that does house calls to show up.

Another new side effect is that cool air or tears hurt my eyes. That’s just great. Because, you know, you never feel like crying when you have cancer. Honestly this one is just funny to me. Like…seriously?! My new motto is “There is no crying after chemo!” Seriously, I cried a little bit yesterday and immediately decided that there will absolutely be no more of that until this stuff wears off a bit. A friend’s daughter sent me a beautiful painting of a stained glass window from her church today. It was so sweet I got a tiny bit weepy and had to be like “Nope. No way. This is not adorable at all.”

So, it will be like this for a while. But it gets better. I still have to take the oral medication for two weeks, but my body seems to tolerate that much better than the IV chemo I get. Now, lest you think I’m just sitting here feeling bad and sorry for myself…I’d like to end with some gratitude.

I’m grateful for my husband handling everything while I am pretty much just capable of getting through the day. I’m thankful for my mom making sure I have everything I need and taking me out when I’m up for it. I’m thankful for the awesome care packages and cards and texts and shout outs on Facebook. I’m thankful that people care enough to read this blog. I’m thankful I’m not sicker. I’m thankful that God has been faithful every step of the way, giving me hope when I need it, grace when I need it and peace the entire time. I sincerely am filled with peace and even joy almost all of the time. Cancer does some terrible things. But it is making me tougher, wiser, kinder and more faithful every day. So, I’m grateful for this experience, even the messy, painful parts.  Besides…I’m a fighter, yo.

Chemo, my frenemy

Chemo is a funny thing.  It’s making me feel way worse than cancer has, and yet we have to assume it’s helping me.  It is difficult to willingly allow someone to put poison in your body.  One of my poisons is made of platinum.  I know, I’m fancy.  But that’s a metal.  And it’s in my blood.  That’s weird.

So far, chemo has made me tired, achy, irritable and nauseous.  It makes my hands and feet feel weird.  And I can’t drink or touch anything cold.  Most of the day, today, I was horizontal.  And it sucked.  My tummy is wonky.  I just don’t feel like myself.  So I did a lot of this.

But that wasn’t really working for me.  So I rallied.  And off we went.
We even rode a mini train.
I’m not saying that getting out and about is the right move every time.  It’s probably not.  But I felt I wanted to test my limits.  I wanted to see how much of this el-crappo feeling was real physical stuff and what was me just letting the cancer and chemo get me down.  It’s definitely some of both.  But it turns out, today, I had a little more gas in the tank than I felt like I did. So now I’m home and in need of rest.  Time to recharge the super powers!

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.