The Cumulative Effect

Chemo is “interesting.”  The fact they can put medicine (poison) in you in the right amounts and combinations to kill mostly the cells that need to die, is pretty amazing.  Some of the side effects, though, not so much.  And then, the dr said recently, there is a “cumulative effect.”  (This is what explains why it is getting harder and harder to show up for work every day). Things get harder as this stuff builds up in your system.

My particular drug combo is Taxotere, Herceptin and Perjeta.  Every week is different.  The treatments are every three weeks (one more to go! – then just Herceptin until March). Treatment was on Wednesday, and Thursday I managed to work two hours before I had to go home and collapse.  I slept 16 hours that day.  Friday I worked.  Saturday, we had kids and grandkids over for father’s day, and I made it until 3 o’clock before my battery was completely unplugged.  I spent the next 16 hours asleep, then slept all day Sunday.  My hands, once again, are showing the burns and blisters from the chemo, and my fingernails appear to confirm I am going to lose about 6 of them before this is all over.  But today, it appears I can function (as far as the new, temporary version of normal goes).

Last treatment, it was necessary to take anti-nausea drugs twice a day for the first week.  This time, only once so far.  This morning I am waiting for it to be 8:30 so I can go get a nice bag of IV fluids added before work.  Countdown to surgery = 43 days.

 

How to Hide a Bald Head

Three out of the three chemo drugs I’m on list hair loss as a side effect.  Now, although my thin, straight, fine hair may not be thick and luscious, but it was mine.  I liked it.  When it started falling out in clumps everywhere (after the 2nd session of chemo), I did the reasonable thing and had it buzz cut.  I bought a wig, thinking I could still look reasonably normal at work.  It’s a nice wig.  It sits on it’s little stand on the table in my room, looking lovely.  The problem is, I only lasted an hour with it on my head.

The part of my research I seem to have overlooked was that hair falling out can make your head very sensitive.  By the time I got to work the first day with the wig (a one hour bus ride), I had a huge headache and knew the day was not going to work.  I promptly went to the hospital gift shop, bought a scarf, and thanks to the Youtube videos I had already watched, tied it on as securely as possible and took my newly decorated self to the office.

I am blessed to work in a place where diversity is the name of the game.  We have beautiful ladies with many different religious and cultural backgrounds covering their heads for a variety of different reasons.  As a white chic, most people who are going to ask look at my scarf and figure I’m having chemo.  Some of the other beautiful ladies have asked where I learned to tie these wraps because they like them.

I found a lot of ideas (most of them braver ones than I’m ready to try) on Wrapunzel Ladies.  These lovely Jewish ladies cover their heads for religious purposes, and make it look feminine, beautiful, colorful, and kind of fun.  They have many tutorials on You Tube, as well as a blog.  I am grateful to them for showing me how to do this so it feels like a choice and not so much like a sentence.

 

 

 

Night Songs

There have been so many times, for me, it seems God can’t get my attention during the day, so He’ll wake me up at night.  I know to some people that sounds strange, but I’m still a simple country girl and that kind of thing just seems normal.  Last night was one of those times where my busy little brain had been running in circles and I woke up to a song in my head I hadn’t thought of for many many years.

I Need to Be Still, by BJ Thomas, was a song a friend taught me years ago.  Part of the words are “When there’s trouble all around and my soul cries out for rest, when it feels like I’m failing even though I’ve done my best, when decisions get so heavy, there are answers that I need – you know it’s time to just be still and let God love me…..”  (click the link).  This was the gift last night.  A reminder that God knows where to find me, and that sometimes I just need to be still and not try to figure things out….easy to say, hard to do.

 

Sometimes it’s just time for a meltdown

I try to be pragmatic, practical, reasonable and emotionally stable.  But once in a while, that just doesn’t work.  Last week we went for the pre-surgery appointment to make sure we could schedule surgery for August.  Everything looked good.  I was thrilled to finally have this “end” of this stage in site and on the calendar, but that night I lost it.

A whole new range of undefined challenges come with having surgery scheduled.  Radiation will follow surgery – how will I react to 5 days a week for 6 week while working full time?  How tired do you get?  What if the hoped for “100% pathological response” to chemo (the one that means you are a lower risk for re-occurrence), doesn’t happen?  What if the MRI shows that not much really changed after the 6 treatments with Taxotere, Herceptin and Perjeta that I am in the process of enduring?  I want some good news here!

While I try maintaining an attitude of gratitude (I have a truly amazing husband who loves me (the kindest person I’ve ever met), fabulous friends, neighbors who are kind, coworkers who are supportive, three children who are fiercely loyal and loving, and four little grandbabies who know who to drive depression and anxiety far away.  I know God is in control of my outcomes.  But some days, fear creeps in.  Words like aggressive and invasive are scary words.

Thursday was my day for a meltdown.  A good cry (if there is such a thing), a warm blanket, a hug, and some sleep, and Friday I was ready to drag myself through another fun day.

Dear Dr – You’re Fired!

On Tuesday, March 3rd, we had our first surgical consult.  This was going to be where we got to talk to a doctor, get our questions answered and find out how to fight this new monster in our lives.  My husband and I showed up early, waited as patiently as you can wait after not sleeping much for the last four days, and had a list of questions prepared.  Over the weekend, we had gone through an online presentation from the National Breast Cancer Foundation that was like a tutorial on cancer ( see link below ) and, while many people recommend staying away from the internet so you don’t scare yourself too bad, I had to have information (and it gave us terminology to be able to understand what the doctor was saying).

Dr. L. did an exam, drew some diagrams, and then sat us down and said, basically, “You need to listen to what I’m going to say, I’ll go pretty fast so try to keep up.  If you have questions, I will probably have answered them by the time I’m done, so be quiet and listen.”  She then proceeded to give us a nice presentation on inflammatory breast cancer (approximately 10 minutes).  At the end of her presentation, we tried to ask questions, but she was done and the appointment was over.  There were no questions answered, other than confirming that it was the inflammatory kind of cancer (she answered that in her presentation).  She had shown us on the ultrasound how a large area of the skin was thickened and involved, confirming what we feared.

We were turned over to her staff to schedule an MRI in two days and sent on our way.  When we got to the car, I was in shock, and my husband was ready to look for another doctor.  She may have been smart, highly skilled, good at presentations, but she sucked at meeting what this family needed.

Dr, you’re fired!  My wonderful husband took the next day off to spend on the phone while I went back to work and try to find out where to go from here.  He got us an appointment for another consult with a surgeon in two weeks.  Her staff was fabulous at answering some of his questions on how this works, what to expect, who answers what and made us feel like they realized this was important to us.  I’ll be seeing Dr. Christine Lee at Swedish again today (see link below), hopefully to schedule surgery for August.  She did not blow off some of the issues my previous experience with being a “difficult intubation” presented (a trach is something I would really like to avoid, and she inspired confidence that is possible).

Inflammatory Breast Cancer

Dr. Christine Lee

 

 

No lump-still cancer

Somewhere, a long time ago (a lump decades ago), I remember hearing that a breast cancer lump doesn’t hurt.  So when something was hurting, I wasn’t that concerned.  I had regular mammograms, it didn’t hurt=it couldn’t be cancer.  I had a mammogram scheduled in a few weeks.  I feel pretty fortunate, that unlike some of the women in the video below, my doctors recognized right away what it was.  Since a lot of people have never heard of inflammatory breast cancer, I’ve included the link to the video below.  Good information.  Hope you and those you love never need it.

 

The Jack in the Box

On February 27, 2015, I got a phone call I had managed to avoid for years!  There had been lots of other scares  with lumps, bumps, biopsies, but all of them turned out to be benign.  This time the doctor’s seemed a bit more excited and some of their wording was more cautious, and I was scared.  Trying to find a way to describe the waiting, the poem below came to mind…..

Jack in the box sitting on the table

Looking harmless but it’s not stable

Never know when it will pop out

And scare you back to dealing with doubt….

The latch is tricky – won’t always stay closed.

How to fix it – God only knows!

So on my knees I ask for grace

To keep my focus from the fearful place.

Unsolved problems – got to let it rest

And trust and hope I will be blessed

With strength to walk where I need to go

Led by the one who loves me so!

Stage IIIB inflammatory breast cancer…. I had been ambushed by this new and unwelcome intruder.  Many thanks to Naomi, Gail, Lisa,  and Barbara – some of the awesome people whose names and beautiful faces I could immediately pictures as friends who have walked on this journey and years later are still here!  Also remembering Penny and Kathryn, who walked this road and are no longer here.  Grateful for Gail’s nagging to always get the mammogram, which I had been doing ever since I met her.