Scary Words

Last week I heard my second scary word in this journey.  Cancer was not one of them.  I’ve had cancer before.  Many members of my family had cancer.  Dad had kidney cancer.  Mom had breast cancer.  Both uncles died of colon cancer.  Three of four grandparents had cancer: skin, stomach, and leukemia.  Wow.  When I did one of those online genetic tests, I discovered that both sides of my family come from the same, very small part of the world.  I think the gene pool is a little too small!

No, the first scary word was chemo.  That word took me by surprise because I was expecting a different course of treatment, and I also think I have a primordial fear of chemo.  As a middle school chemistry teacher, we investigate solubility, and one of the solvents we use is alcohol.  I always slip in a little lesson about how alcohol is poisonous.  As soon as we ingest alcohol, our liver says, “not again!” and tries to remove it as quickly as possible.  As I was teaching that lesson this year, I realized that I am submitting to chemo, a process in which I allow strong poisons to be infused into my body.  Sure, they kill cancer cells, but they also kill healthy cells.  It seems like such a primitive treatment.  Someday, we need to do better.  Yes, “chemo” is a scary word.

A few weeks after hearing the word chemo applied to me, I heard another scary word.  Even though we initially thought my lymph nodes were fine, a closer examination of the MRI revealed some suspicious areas that were later confirmed by ultrasound.  I was facing the screen during the subsequent biopsy, so I got to watch.  The photo shows the needle taking its sample.  I read the pathology report online: “metastatic carcinoma measuring 1.4 cm.”  Metastatic is not a nice word.  After sitting with that shock for a while, I remembered that it makes sense.  If it is breast cancer outside the breast, then, by definition, it is metastatic.  Okay. 

I talked with my oncologist for a long time on the phone.  Is there any way to know if it has spread elsewhere in the body?  There is no way to know without a full-body scan, and a scan would not be ordered unless there were symptoms elsewhere.  Great.  I already wonder if every weird body thing is caused by the chemo (by the way, on Day 11, I broke out in acne!), now I will wonder if every new pain or sensation is because of cancer somewhere else!  I’m quickly realizing that much of this battle will be a mind game. 

Then I asked, “how would the treatment be different if we knew there was cancer elsewhere?”  She said that “we would pull back on the treatment.”  Pull back?  Why?  Because we would change the approach from let’s “wipe this out for good” to “let’s manage this disease for the rest of your life.”  Okay then.  Carry on! 

Chemo Round 1

Thursday, Day 1

The day of the infusion was fine.  The nurse hovered nearby during the hour of Docetaxel, in case there was an allergic reaction, but there was none.  On the drive home, my car had a little mishap.  Kind of a funny story.

Friday, Day 2

Feeling a little tired but no big deal.  We took the car in.  The mishap will cost $1200.  Still a funny story.  My 15-year-old little red Prius has been through a lot, but she’s still going strong.  My friend and I had a lovely Indian meal and drove the loaner home.  I felt very cold, 95.4 degrees, and tired, and the full-body aches were in full force.  At around 7:30 that evening my on-body Neulasta injector beeped.  An hour later it was empty. A little fire in my condo building made for some excitement and it was time for bed. 

Saturday, Day 3

Knocked out and down for the count.  The day is a bit of blur.  I remember thinking the tv was too loud, but I couldn’t find the remote.  And couldn’t be bothered.  Weeks ago, an experienced friend offered to come over any time, even to just pick up the remote.  Now I know what she was talking about.  I also remember wanting the nausea meds but not having the strength to get them.  Except for episodes of cramping diarrhea, I slept most of the day.  And was very cold.

Sunday, Day 4

Woke up feeling better.  I needed some fresh air and decided to return the loaner and pick up my car on my own.  I did.  And collapsed the rest of the day. 

Monday, Day 5

I made it to school.  Because last week was Intersession, this was our first day of classes after my students wore pink for me.  I recently cut my hair very short (I’m calling it my segue cut) and I found out that some of my students are saying I donated my hair.  I have no idea where that came from!  I taught my morning classes and colleagues covered for me in the afternoon so that I could go home to rest. 

Tuesday, Day 6

Today was a full day of classes, but during my first period I realized I needed to have Imodium with me.  Colleagues covered for me again as I made a mad dash home and back.  (Thank goodness I now live close by!) During my second period I had a massive acid attack.  I don’t know what else to call it.  Severe stomach pain followed by throat pain.  By the end of the day I felt horrible.  Fortunately, I already had an appointment scheduled with my internist.  My heart rate and blood pressure were high and my throat raw.  Since I already take the maximum dose of medications for acid reflux, there is not much to do.  She prescribed an abdominal ultrasound and a test for h pylori, but all of that came back normal.  It’s just another side effect of chemo.  I took a dose of “magic mouthwash” (it includes lidocaine) and had a very difficult night. 

Wednesday, Day 7

I woke up to sunlight, always a very startling thing this time of year!  I guess I finally slept but hit the alarm at some point.  Fortunately, I was able to make it to my hydration appointment at Sibley on time.  I remembered to put more lidocaine cream over my port, but it was still a significant “pinch.”  At least they are more honest and tell you to take a deep breath and hold it.  They said next time to put a big gob of cream on and cover it with plastic wrap.  Someday I’ll get this down.  They infused saline solution for two hours.  During that time, they found an additional medicine for the acid reflux (the size of the pills leads me to think they were meant for horses) and gave me a wig.  The very nice nurse navigator had me try on a bunch and I laughed at each one.  I just can’t imagine. 

Thursday, Day 8

Throat is getting better, but a mouth sore appeared.  Magic mouthwash really does help, however.  Diarrhea is getting worse.  I need to do a better job of staying ahead of that with the Imodium.  (We’re instructed to take more than the directions on the bottle.)

Friday, Day 9

A weak start to the morning but by the afternoon, I felt better.  Normal toothpaste and even alcohol-free mouthwash are painful.  A friend gave me some Biotene toothpaste and mouthwash.  I’m a fan already.

Saturday, Day 10

Tongue feels weird, but other than that I almost feel normal!  Round one to me.  Hah!  Take that chemo. 

First Infusion

I was nervous, for sure.  But the way I deal with these things is to be interested in the process, and it was certainly fascinating. 

I was fortunate to have my friend Ryanne, who went to Easter Island and the Atacama Desert with me last summer, fly in from California to share the experience with me. 

The Infusion Center looks calm and inviting with huge nature photographs and curvy hallways.  There are 33 private rooms surrounding the center area of nurses’ stations and mini kitchens.  We had a corner room with a big window, comfy recliner with heat and vibration, changing color lights overhead, big tv screen, and several extra chairs. 

The infusion nurse was fabulous.  Kind, calm, and very interesting, she was the consistent rock as many other people came in and out throughout the day. 

They take special precautions to insert the line into my port in a sterile way (including having me wear a mask).  Whenever the nurse started another infusion, she was covered in a full disposable robe, goggles, and double gloves.  A second nurse confirmed my name, birthdate, patient number, drug name, dosage, flowrate, and time. 

The whole process took eight hours, including five hours of drug infusions:  Trastuzumab for 60 minutes, anti-nausea medicine Emend for 30 minutes, Pertuzumab for 90 minutes, anti-nausea medicine Zofran for 30 minutes, Docetaxel for 60, and lastly Carboplatin for 30.  The first two drugs are monoclonal antibodies that will target the specific HER2 positive cells.  The second two are the poisons that kill fast-growing cells like cancer cells.  It will also kill other fast-growing cells, including those in the skin, digestive track, and blood cells.

Entering the Cancer Center

First Meeting:

I guess it’s official.  Entering the Kimmel Cancer Center seems to be a big moment.  My oncologist gave me the booklet outlining the chemo plan and side effects.  I thought I would get my schedule then, but there were three issues to deal with first: 

  1. Will my liver doctors at NIH and Georgetown approve of the treatment, given that I have an autoimmune liver condition? 
  2. What are the results of the MRI biopsy of the other areas? 
  3. Is the tumor growing into the muscle? 

Second Meeting: 

  1. Liver doctors say no problem – go for it. 
  2. Second biopsy showed that the other areas are cancer.  They now consider the “affected area” to be 4cm.  Lumpectomy no longer an option.  Mastectomy this summer. 
  3. A careful look at the MRI resulted in good news – tumor does not seem to be growing into the muscle. 
  4. And bad news – the lymph nodes look suspicious after all. 

Chemo Class: 

Yes, there is such a thing.  Who knew?  It was a mixture of dread and an outline of the support system they have at Sibley, including reiki, acupuncture, massage, yoga, etc. 

Port Insertion: 

Since I will have a year’s worth of chemo, it is helpful to have a port put in.  This is also a way to have the chemo go into larger blood vessels where the poisons can be diluted more quickly and irritate the vein walls less.  They put a piece of plastic under my skin with a catheter going into the jugular vein in my neck and then back down through the superior vena cava to the heart.  I was awake the whole time.  Cool picture, though!

Another ultrasound:

Reconfirmed that the lymph nodes look suspicious after all.

Another biopsy. 

Third in 2020.  This time I was facing the screen so I could watch the whole thing, from the slow insertion of the anesthetic to the quick piercings for the core samples.  If it comes back cancer, they will know to remove all the lymph nodes during this summer’s surgery, even if the chemo makes them look clear. 

Time to be Stoic

They told me I needed an MRI-guided biopsy.  I’ve had many biopsies over the last twenty years.  And I just had an MRI.  I could not fathom how to combine the two.  I was soon to find out. 

This time I had a female tech to guide me, but there was also the requisite young man.  And the doctor.  In terms of body part placement, I knew what to do this time. 

With my normal hearing challenges, however, combined with ear plugs and headphones for music, I could not hear them when they told me what to expect.  I just waited and tried not to jump at inopportune times. 

What I remember:  compression, being pushed into the tube, banging/whirling/wheezing, being pulled out, needle placement, pushed back in, more banging/whirling/wheezing, pulled back out, sample taken, clips put in, and finally I could move.  While I was in the tube and stuck with needles, the female tech held my hand.  Very sweet. 

Then I was led blind (no glasses), deaf (no hearing aids), and still dressed in gown and socks, to a different part of the building for a mammogram.  Yes, breast biopsies are always followed by a mammogram to make sure the clips are in the right place. Clips are little pieces of metal left in place to guide the surgeon.  It was all rather traumatizing. 

Swinging Freely

A few days before dad passed, I got my first MRI. 

Getting a breast MRI is a little different from most.  I’m standing next to the machine, in my socks and hospital gown, and the contraption on top looks like this could be awkward. 

A young man says, “I don’t know how else to explain this, but you need to make sure you are hanging freely.”  He says he will leave the room as I get myself arranged. 

I had to climb on top, lie down, and arrange my body parts so they “hang freely,” without getting caught on anything, all while trying to arrange the gown gracefully. 

I get myself all settled, while stifling laughter, when I realize that there is a large window overlooking the room.  Who knows who has been watching my maneuvering? 

All the banging and whirling and other odd noises were interesting.  I looked down through a hole.  They politely provided a mirror in which I could occasionally see someone’s pant legs. 

A few days later, the results showed multiple areas of suspicious shadows.

A Warm Blanket of Love

It felt strange to be faced with something so big and have no idea what to do.  Fortunately, the experts tend to guide you through. 

We decided to have dad’s memorial service the next weekend.  Ann, a longtime family friend flew in from Iowa to be with mom.  I went back home for more medical tests and to gather photos.

A surprising number of friends drove for hours to attend.  I felt surrounded by a blanket of love, much like the one my friend/sister Lubka sent to me.  The church was filled.  People shared stories. 

The biggest messages were dad’s sense of humor and the strong bond between my parents.  Throughout their time together they regularly recited the “Sweetheart Poem” to each other.  They were married on July 6th, 62 years ago, and during all that time, dad gave mom flowers on the sixth of each month.  He made that happen even when he was feeling horrible in the hospital. 

Mom feels so very alone.  The next day I went home for more tests and appointments. 

Driving South on 95

Over these past six months, I have found my sense of time to be woefully inaccurate.  It seems to expand and contract in random ways, and I often don’t know what day it is.  Even as I reflect on my experiences, trying to catch this blog up to the present, I become confused.  The Appropriate Dessert is out of order.

My dad

That appointment with the surgeon was on a Monday.  The plan was for Linda to come down early to have a fun weekend together.  That never happened.

Two weeks before I was in the middle of afternoon southbound traffic on 95 when my phone rang.  The woman on the line was dad’s doctor in ICU and she wanted to discuss end-of-life-plans. 

“What are you talking about?” 

Dad’s condition had declined rapidly.  I asked how long he had, and she said “days, rather than weeks.”  This should not have surprised me, but it did.  Why are we never prepared for this?  I said I would be there in two hours and to wait until then to have the “family meeting.”  I called my parents’ pastor and he said he would drive straight to the hospital. 

I said hello to dad.  Then mom, my brother, the pastor and I were escorted into a conference room.  Dad was dying.  Mom fell apart.  I could not feel.  A social worker entered and gave us three choices for hospice organizations.  Is there an Angie’s List for that?  How does one decide?  

We went back to dad’s room.  I fed dad ice chips and then a cup of Jell-O.  I had never fed anyone before.  It felt like a gift for me to be able to do that.  Although talking was difficult, Dad asked how I was doing.  He soon drifted off to sleep.  It was late.  We were tired.  I gave the nurse my cell phone number, and mom and I went to their apartment. 

We were asleep for an hour when my phone rang.  “Your dad is having difficulty breathing and I am giving him morphine for the pain more frequently.  He could pass tonight.”  I texted the pastor and called my brother.  The pastor said he was on his way.  Emotions flowed and we made our way back to the hospital.  

I have heard that being with someone as they pass is an honor and a privilege.  It was for me.  The nurse explained that what we were hearing was agonal breathing, the body’s fight to take in oxygen.  Because dad was under hospice orders, the nurse gave him morphine when he exhibited pain.  I saw him groan in pain once, but the nurse was ready.  She lined up vials of morphine and came in every 15 minutes to administer them. 

Mom and I each took a hand.  The pastor was besides mom.  Mom rubbed dad’s arm.  I watched his face.  And the monitor.  When blood pressure gets to be around 30/20, you know it will not be much longer.  The pastor sang.  In less than five hours, dad was gone. 

Mom struggled, but I felt enormous love and peace that stayed with me through the days to come.  Even complete strangers seemed extra caring during that time. 

Dad had a good life as have I.  Dying is okay.  I am less afraid.  No one knows how much time we have, but whatever happens, it’s okay.  I learned it is okay to be with someone during that transition.  And doing so can be a gift to the soul.

An Appropriate Dessert

After lots of Google-itis, I decided I would probably need a mastectomy. 

In my naivete, I figured I could schedule it over Spring Break and not miss any school.  Hah!  More research showed the surgery requires 4-6 weeks of recovery.  Although somewhat daunting, I just imagined myself reading lots of books and then being done with the whole thing.

I knew the surgeon I wanted to work with.  I had breast cancer in 2012, but that was very early stage and I only needed a lumpectomy and five years of Tamoxifen.  Many things went wrong, including needing a second surgery because the first surgeon missed a spot.  I finally got connected with a surgeon with a great reputation.  She got the job done.  I went to her again.

Linda drove down from Pennsylvania to go with me to the appointment.  After an exam and some humor regarding the size of my endowment (and the fact that I teach 8th grade), the three of us met in the surgeon’s office.

That’s when my life took a turn.  Surgery, yes.  But not until after 18 weeks of chemotherapy.  That took me aback.  And after surgery, more chemo and months of radiation.  What?  I said, “you know I teach 8th grade, right? And now I’m going to go bald too?” 

Someone in the waiting room laughed and told me about cool gel caps to help grow the hair back faster.  It was too much.  My head was spinning.  I’m glad Linda was there. 

The surgeon moved fast.  Twenty minutes later I got a call to schedule an MRI.  We had a nice lunch, and then Linda spotted a dessert that she just must have.  Given the occasion, I had to have one too. 

The Noodle and the Diagnosis

It was a needle core biopsy which means I try to keep my eyes closed as she keeps stabbing me with a very long needle. 

Then again, I am a scientist so am fascinated by the whole thing. 

I’ve had needle core biopsies before, but it never occurred to me that they truly take a core sample like someone takes a core sample out of the ground and pulls up a whole tube of soil.  I asked to see it and sure enough, it kind of looks like a piece of spaghetti. 

After almost a week I get the call – yes, it is cancer.  The tumor is roughly 2 cm and the pathology report shows it is HER2 3+ with Ki67 of 63%.  The good news is there is now treatment.  The bad news is it is extremely aggressive and fast growing.