The Best Laid Plans of Mice and the Chemo #3 Dream Team

I feel certain that Robert Burns was not specifically thinking about my day last Tuesday when he wrote "The Best Laid Plan of Mice and Men", but man that phrase kept running through my brain...along with an alarming number of 4-letter words aimed directly at those who were waylaying my 'best laid plans'.

I am a planner.  I should have a shirt or a tattoo or a bumper sticker.

My family knows it, my friends know it, people who follow me in line know it...I am guessing some can just sense it.

And throughout chemo, it has been an asset.  As I've written before - I expect to have chemo figured out just when I'm through with it.  But after Tuesday, maybe not!

Many of you know through Facebook and Crowdrise, that I had some serious trepidation about my 3rd Chemo treatment.  I was so nervous.  I think I was realizing how tired I was from our family vacation - which was perfect and restful and full of family and love and fun and laughter and relaxation...but it was a long drive both ways and (along with being a planner) - I like to drive.  I am a planning control freak!  Maybe it's control of the music or when we stop or the game of "speed buddy"...yeah, it's the "speed buddy" thing.  I pick someone with just a bit more speed confidence than I have...say I'm comfortable going 3 miles over the speed limit (don't do the crime if you can't pay the fine!), but a guy in a normal car, not using cruise control, preferably with in-state plates is doing 8 or 9 miles over the speed limit - he or she becomes my "speed buddy".  I fall in line and follow them for as long as it works.

Sometimes I have to give a couple of buddies a try - some people are put off by someone following you...obviously following you, but on our trip home - I found 2 perfect speed buddies who I believe took at least an hour off our total trip.  I did my best to teach the theory to my son (I know, what kind of mother teaches their child that it's ever okay to do any miles over the posted speed limit...I REALLY wanted to get home, but I also knew how much he wanted to drive for a while...so I let him have at it on the OK Turnpike and taught him "speed buddy"...but used a 3-4 mile over the speed limit guideline...compromise!)

Anyway, I was tired from the drive, the unpacking, the resettling into our lives and the knowledge that in less than 3 days, I was back in the chemo treatment room.

I thought that was why I was nervous.

I think I was wrong about that!

Chemo #3 Dream Team

The Universe was sending me a message to find my calm, call in my prayer warriors, muster my yoga breath, surround myself with comfort and my dream team because the wheels were about to come off my Chemo #3 Bus!

To all the amazing folks who checked in, sent a prayer or message or emoji or post - God Bless You!  My feet didn't touch the ground as I was checking in I was so lifted!

Sadly, it wasn't long after my harmless signing in that I almost hit my knees.

I got there and went to the "wrong" desk.  In my mind, it was doctor, labs, treatment.  So I went to the doctor's entrance (mind you, they all connect to the same places...so why this is even an option, I have no idea).  I was told it was labs, doctor, treatment and no, I couldn't just walk back from this side, I had to check in at the other side.

And then the dreaded "Were you aware that you have a balance due of...."  That was all she got out of her mouth.

The very first time I went for chemo, they drug me into the finance office and told me that my portion (my 10% of each chemo) would be just over or under $1000, depending on the pre-meds for that treatment...we have moved solidly into the over $1000 because I require the anti-anxiety meds and so does everyone else in my circle (for me, not them!!!).  Anyway, it's a personal flaw of mine to take everything to heart, but that's who I am, so I was not only scared to pieces about my first chemo, I was so overwhelmed and embarrassed about my inability to pay in full this surprising amount for 4 total treatments that I did not handle it well - which I am certain played a significant part in my total come-apart during Chemo #1.

So, as a planner, I did what I thought was the proper thing.  I contacted the nurse in charge (the amazing Krystal, the Beautiful Soul) and told her of my experience and asked if they could make a note on my screen/chart/profile/whatever to NOT approach me about finances until the next day after chemo when I was going to be in anyway for my Nuelasta shot and to let them know I would be making payments, not paying in full.

Chemo #2 - no problem.  Not a mention of financial responsibility or burden, not a scouring face at my empty checking account, no judgement or tsk, tsking.  Just a smooth sail into Chemo #2.

So, thinking I had it handled, aka planned, I was surprised when the receptionist asked me about my balance.  So, I explained to her that I had asked to handle finances the day after chemo and she was nice enough to put a note on my screen and I even heard her tell the shrew at the other check-in desk NOT to approach me about my balance and that I would be making a partial payment when I returned on Wednesday.  I mean, seriously, we had barely gotten back into town...I hadn't begun to divvy up what we had to give to who we still owe. 

So, off I went, to the other side to check in and breeze back to have my lab work done, before seeing the oncologist and embarking on Chemo #3 treatment and don't you know...she asked me about my balance!

Not directly.  She looked up from her desk, sort of smiled and asked "Are you Lisa?" in a louder-than-necessary voice (should have been my first tip-off) and then her eyes went directly to an unopened folder or the top of her desk or somewhere downcast away from me and she she mumbled "I understand (insert name of receptionist from the other side here) let you know you have a balance of.............................." and I lost my mind!

Not one of those quick, got-it-under-control mind losing experiences...it was a full on WTF (sorry) implodes.

My eyes went wild.  My voice went up (I know this because people looked away and peaked around corners) and my outrage made my entire body shake.

I couldn't believe it.

I explained to her that I personally heard the other receptionist ask her nicely to not bring this up and that I was aware and that I was planning on taking care of it the very next day.

And, bless her heart, she didn't have the good sense to let it go.

She wanted to be right.

She wanted to challenge me...the clearly crazy person across the counter from her.  Poor thing.

I would never survive in a physical fight - even at my best - unless maybe someone was messing with my kids...but you know what I mean.  I'm not daunting.  Or ruthless.  Or aggressive.  Physically.

But I have always been blessed with an ability to verbally take down almost anyone.  And I did.

I am not proud of it.  I actually walked away because I could sense, even in my rage, how outmatched she was and I hate to ever be cruel.

And that's exactly where I was going.  I did call her a liar at one point and the Capital B made it onto my lips (for the obvious B-word that she chose to be), but I think I stopped it before it came all the way out.  For all I know she was already in the back room behind the magical locked automatic doors by the time I was headed out.  I would have been!  The old man sitting by the harmless unlocked entry door that I was raging towards caught the capital B and thought it was hysterical.  Glad to know I made his morning.

By the time I made it back into the doctor's reception area, I was in tears, red-faced, couldn't breathe and so angry that I had worked all night and morning to find my center and it was all blown up.  And I let myself get angry and I hate that.

I am certain she has a list of things she has to do - and at the top of that list is making sure people pay their bills or know about their bills or at least have to feel guilty about their bills so they are more likely to pay their bills.  I am also certain she sees hundreds of people every day (there were 67 of us in for treatment that fateful Tuesday...I hope the other 66 were calmer!)

Anyway, she should have been kinder.  Smarter.  More caring.  I should have ignored her.  Been more insistent on going through the taboo doors and not going to the other side...I knew something bad was over there....

But I hate to be cruel and I hate to lose my cool.  But I did both!  Big time!

It took a while, but I finally got back to see the doctor.  The poor nurse that had to put in my numbers was terrified.  Talk about peaking around corners...when I came back across to the doctor's side, my control was pretty much gone.  I was scolding and horrified and outraged and not the least bit quiet.  Even my sweet family was averting their eyes and pretending to look at their phones and arrange things in the chemo kit so they didn't have to look directly at me!

But, eventually, it was all back to normal...or so I thought.

I had my appointment with my oncologist.  Things going right on track.  Next steps.  Expectations.  Double checking pre-meds and prescription refills.  We were off-track time-wise, but I was getting back to my zen, happy place.

Off we went - back to the ONLY private room in the entire infusion area - reserved for those who are doing chemo-cap therapy or who had a severe reaction or fear or whatever during their treatment.

When I turned the corner, I noticed this look on my husband's face - I honestly thought they were turning me away because I was so awful earlier.  But no - it was worse!

They had given my private room to someone else.  They actually moved all our things out of the room (that we had already set up) and pushed them over into a corner!  Right out in the middle of everyone!

ARE YOU KIDDING ME??????

This was clearly a dream...nightmare...whatever.  No way this was actually happening.  No way!  I was just back at zen.  Just back to mentally tough enough to endure 8 hours of -35° C ice hats on my head and severe nausea and exhaustion and the crazy surging cold of T/C treatment.  No way!

 But yes, it had happened.

I suppose everyone goes through a lot of steps to get ready for chemo.  But all I really cared about were the steps we had gone through.  The time off that had to be requested for my husband and son.  The rides for my daughter.  The mental preparation.  The packing.  The planning.  The understanding that if we followed our part of the bargain, the chemo folks and oncologists and nurses and administrators and even the financial people would do what they had said.

It was bad. 

It was pretty obvious they knew they had probably made a mistake, but somewhere deep inside, they were hoping I would be more understanding.  Or quiet.  Or agreeable.  The poor messenger nurse tried.  And I sent her off to find a supervisor - who didn't have the guts to come out on his own (I had a few select words for him) and sent her back to deal with me.  What a baby! 

I could see they all knew what they did was wrong, but it was too late.  Someone else was in my room and no one was going to deal with it or take responsibility for it or fix it.

I panicked.  We were running out of time to finish the treatment.  I knew I was unable to go through this sitting in a Barco-lounger in the middle of a room (they did offer a white sheer screen thingy, but please!) and it would be almost impossible to get my dream team another day off that soon after vacation to be with me and this is not a solo gig.

I can't explain the bargaining and the conversation and questioning and back and forth that went on.  And my complete surprise that as open and honest as I have been, my note taking and attention to detail and reputation as a planner, that they would actually say out loud...."I know you had your things set up in there, but they were ready to go, so we moved you out."

Without a warning or a word or the option to GET IN THERE and stake my claim.  I respect doctors, but I respect chemo more.  I would have walked right out on my oncologist (who I adore) to have my room.  I cannot express how important routine has become in getting through chemo days.  And part of that routine is having my room, my privacy, the ability to make the horrible little noises I can't stop during the first 5 minutes of each cold cap.  Having a safe place where I don't have to put on a happy face or be upbeat or smile or buck up.  What was I going to do?

In the end, the other family (who had moved their appointment which is why we were both there on the same day) moved out into the main room and used the little sheer screen and I got my room.  The room we were told we had reserved.  There was some back-and-forth about whether that was ever "really" said...which disappointed me at a pretty deep level, especially when I was able to quote conversations where I was clearly led to believe that YES, we had an appointment for that private room.

Except responsibility people!  Even when you screw up - unintentional as it might be.  Don't make the crazy lady with cancer and tons of fear feel like she is losing her mind more that she actually is.  Just apologize and make it right.

I had to see the husband of the lady we displaced while I was trying to get myself back together and I lost it.  I felt so bad.  I didn't want her put out of her comfort zone either.  I wanted someone who allowed this to happen to magically fix it so no one was put out.

That's not how it works in the real world.

Someone is inconvenienced.  Or moved.  Or made less comfortable. 

And, maybe for the first time in my life - I made it someone else.

I always give.  I always let someone go in line before me.  I will take the next cab or let them have the corner piece of cake (that's a big deal for me, just so you know...I adore frosting!) or use the good goggles.

But not Tuesday.  I know my limits.  Chemo is tougher than I ever imagined and in order to survive, I chose me.  I let them move out.  I moved in.  I kept my head down and felt terrible, but I took the room.

I also switched my next appointment so they wouldn't have to.  It felt like the least I could do.  I have no idea if they appreciate it or even know, but I know.  And I feel a little better about it.

It meant some juggling for us, but nothing that we couldn't handle with 3 weeks notice.  And it felt like the right thing to do.

I made it through Chemo #3 in pretty good shape.  There were a few other glitches - I mean seriously, people steered clear of us!  Usually, there are 3 or 4 people who come in to check and offer and get and peer...not Tuesday.  It was just us.  One brave nurse and no one else...and I'm sure she drew the short straw.

Krystal the Beautiful Soul checked in until we got the next appointment conflict ironed out- because no one wants to have to go through that again!, and then even she disappeared!  How nice to be infamous!

Ice caps & a Jiffy Pop Hat

But we made it.  My family got to work and got me through Chemo #3. 

The infusion room was all but empty by the time we left for the day, coolers and bags and a big stuffed dog in tow.  No one looked directly at me - which was fine - I prefer it that way when I am vulnerable.

I have no idea what was said about me or my situation or my response.  I'd like to think someone recognized a teachable moment...but who knows?  Not me.  And I can't make that my concern.  But, as a planner, I have put notifications into my calendar to call ahead and confirm my expectations and my private room and my payment schedule. 

When I did return on Wednesday for my shot, I got in line at the "other" reception desk (away from the shrew), we did not make eye contact.  She was smart enough to not try and help me.  I paid what I could and the appointment went off without a hitch.  At one point I thought I saw her consider asking "can I help you ma'am?", and decided not to.  There was no waiting on her side, but I was weary from the day before and decided it would be incredibly unwise to even chance eye contact with her.  My son thought it might have made the day more interesting, but he's a teenager and easily amused by things that shouldn't be amusing!

Daisy, the Medicine Dog

And now we are in #chemoweek and all that goes with it.  Eating fruit, chomping ice, taking naps, taking tiny walks, getting in the pool when I have a chauffeur and watching the Olympics!  What a wonderful coincidence - finally an excuse to sit and watch the Olympics without guilt - all of it!

I believe I hear the swim trials calling my name right now...thanks for listening to my rant...Chemo #3 really was quite a day!