Plodder Througher

Tanzania 2014

Sometimes I think of myself as a “plodder througher.”  Especially when times are tough and there isn’t much choice.  Just move forward and eventually get through.  Kind of like an elephant. And having buddies helps.

My electrolytes were okay, and I had my fifth infusion that Thursday.  I woke up Friday morning feeling fine, but by 8:00 I could feel “it” coming.  The “it” being that overwhelming fatigue when any movement is a challenge.  This time it came early, and I slept for the next three days.  Since I just felt sick anyway, being able to sleep was a blessing.  Monday morning, I was a little better and tried to get through some email but experienced mushy brain; I just couldn’t think.  I watched TV all day.  Tuesday “it” lessened more, and I tried to slowly get back to normal. 

My nails hurt, fingers and toes.  They are also becoming discolored.  I’ve been told they may fall off.  Lovely.  But the most concerning new phenomena is the beginnings of neuropathy in the feet – odd, tingly sensations with a little pain and numbness.  My doctor is a little concerned about that and if it doesn’t improve by the next infusion, they may reduce the chemical that causes that side effect.  So far, no food poisoning this time.  Just the normal digestive distress.  Yay! 

I’ve always had a thing for elephants and compiled this list a few years ago. 

Some lessons that elephants can teach us:

  • Honor the dead.  Elephants are known to visit the bones of their ancestors.  Although fraught with mixed memories, our predecessors have influenced who we are. 
  • Be patient.  Move slowly.  Rarely is speed necessary.
  • But when urgency is needed, be ready.
  • Work together.  Help each other, family or not.
  • Be solid.  Be calm. Be present.  
  • Gentleness goes a long way.  Someone told me they that when they need to transport elephants, they put a chicken in the truck.  Why?  The elephant will remain still to avoid stepping on the chicken. 
  • Reach out to others.  Elephants constantly let each other know they are there.
  • Stay next to your buddies.
  • Be playful.
  • Trumpet loudly when happy.

I may not be able to trumpet yet, but I plan to enjoy the week as I gather my strength for the next and last onslaught on June 4. Thank you for the continued random meals, cards, calls, and texts.  And thank you to whoever sent the Moyes book – I look forward to starting it today! 

Cleaning Out The System

Aren’t they cute? I am glad I got to go to Tanzania a few years ago.

Tomorrow is my fifth chemo infusion.  The good news is that there is only one more after that.  The bad news is, I still need to get through these two.

Many people are using this time at home to declutter and deep clean their homes.  I haven’t yet done much of that myself, but my body decided that was a good idea.  Since I last checked in, my digestive system did two rounds of serious, deep cleaning.  The first episode included nausea and feeling miserable.  The second episode was just like the prep needed before a colonoscopy, but it lasted for 30 hours straight, including all night.  I now know how someone can become severely dehydrated because, frankly, it doesn’t matter how much you drink.  Unfortunately, this last episode was just this past weekend, and my oncologist could tell it had happened simply by looking at my bloodwork from Monday morning.

I felt better Tuesday morning, but since then my hold on things has been tenuous at best.  I’m getting really tired of the BRAT diet!  They will repeat the blood work Thursday morning to see if we can go ahead with the scheduled infusion.  I’m doing my best to make this happen since any delay would be disheartening.  Why the involuntary cleanses are occurring is not clear.  A friend suggested that maybe I’ve picked up a C diff infection.  (Trust me.  You don’t want that.  Thanks Stan!  😊  )

Still Here

Just checking in to say hello.  I am still feeling very ill from last week’s infusion.  The energy needed to do Taiko, Japanese drumming, seems so far away.  Today I gathered my strength to take a shower and will call it a day.  I think I’ve officially transitioned from “this is fascinating” to “this really sucks.” 

But as always, your support helps.  Thank you for the continued check-ins, cards, packages, rides, and deliveries.  I am grateful to you all.  During this time of the virus, we are all dealing with difficult stuff.  “Together, apart,” we will make it through.

You make cancer sound like a camping trip!

“…a bit uncomfortable, but still a good time.”

Spring in front of my building

A friend said that to me after I described my trip to the hospital last Wednesday for some hydration. Maybe not a good time, but fascinating, nonetheless.  My drive to the hospital that morning was a moment of pure joy.  Since I hadn’t driven in three weeks, the experience was extra special.  I blasted classical music and helped the conductor do his job.  The spring flowers and flowering trees were in full bloom in front of a background of fresh green, all viewed through my polarizing sunglasses.  It was truly beautiful.  But my time at the hospital, and the feeling that I had been poisoned by rubbing alcohol, made the equally beautiful return drive not so joyful.

Cancer in the time of Covid-19, Part 3

  • Lots of spaces are available in the hospital parking lot, because visitors are no longer allowed.  At all.
  • The wipes are gone!  Remember the whole gloves and wipes story?  I thought I had the routine down, but no – the hospital seems to be hording wipes.
  • My temperature was taken under my armpit since they never want patients to lower their masks.
  • Nurses are being “cross-trained” to prepare for a possible surge of Covid-19 cases.  Since nurses in the oncology wing may need to go to the main hospital to deal with the virus, many of them are learning new tasks.  Because of that, I got to hear my nurse explain to her trainee all the steps needed to access my port. 

Accessing the Port

After my port was surgically placed last February, I was told that if I had to go to a hospital and someone saw it, they would want to use it,  but that I have to be assured they know what they were doing.  It is a 15-minute procedure and must be done correctly.  Why?  Because it is essentially a “central line” to my heart.  Any contamination could be very serious.  I knew all that (except I hadn’t heard the phrase “central line” used in this context before) but listening to my nurse train her colleague on the importance of each step was very interesting. 

This is what I remember:  sterilize the table, open the outer layer of the kit to access the two pairs of sterile gloves, put on one pair to open the rest of the kit and carefully place all the parts on a large sterile pad, switch to the other pair for the rest of the work, use pressure while swabbing the skin with three separate swabs of alcohol (no wonder my skin looks and feels raw each time), use all your fingers to stabilize the triangular port and ask the patient to hold their breath,  aim for the center with the three quarter inch needle, sometimes it’s necessary to use a one inch needle but patients really don’t like that (hmmm, I wonder why!), squeeze the sides until you hear the snap, never flush into the line to clear it since there may still be heparin present from last time, instead, withdraw blood to make sure the line is clear, twist ten times with an alcohol wipe every time you attach a new part, etc.  I thought it was all very interesting!

mission accomplished

But I swear that I was breathing out rubbing alcohol.  And since I wasn’t supposed to remove my mask, I felt like I was just recycling it all morning.  Even though a large bag of saline solution dripped into my blood was supposed to make me feel better, I ended up feeling worse.  That night I kept smelling it.  Imagination or not, it was gross.  I was ambivalent about going in the first place, and after this experience, I probably won’t do it again.  I’ll just have to manage on my own.

Holy Week

I finally feel myself shedding tears over the personal losses my family has suffered recently.  Today is Saturday, the day in the Christian calendar between loss and a new beginning.  It feels as if the whole world finds itself in that limbo right now.  But hope can be found.  On the horizon.  Somewhere. 

Two colleagues are stopping by today to deliver food and groceries.  And Easter dinner tomorrow. Thank you all for your continued support.  If I can support you in any way, without leaving my virus-free cocoon, please let me know.

Cancer in the Time of Covid-19, Part 2

Pre-Infusion puppy fix!

Last Wednesday I had my third infusion, and there were more examples of the effect of the Coronavirus: 

  • My required pre-chemo doctor visit was a virtual one.  It’s important that I stay away from the hospital as much as possible. 
  • I was asked to put on my own wrist band.
  • Chairs in the waiting room are taped off to force physical distancing.
  • Remember when I was reprimanded last time for not using gloves with their especially toxic wipes?  Well, they now warn people with a posted sign.
  • My nurse thanked me for wearing a mask since it protects her as well.  
  • Two masks come with the kit to open the port, one for the patient and one for the nurse.  Since I was wearing my own mask, I was hoping to keep that extra mask in case I needed it later.  Nope – they are keeping all “extra” masks.
  • To protect themselves from the toxic chemicals, the chemo nurses always put on long plastic gowns every time they change the bags.  This time, my nurse saved her gown to use all day to maximize gowns available for the Covid-19 part of the hospital.
  • I can’t get my own tea anymore.
Look at the size of that port needle!

How am I?

This infusion hit me much harder than the first two.  I fell asleep during the treatment and slept the rest of Wednesday and most of Thursday.  Friday, I woke up without enough energy to hold up my arms, so I couldn’t read the newspaper.  The fatigue was incredible. 

On Saturday I began to feel a little better but then almost called the ambulance since I thought I was having a heart attack.  I had extreme chest pain, high blood pressure, and rapid heart rate.  I even went so far as to get some fresh clothes on and unlock my door.  But the feeling resembled my acid attack after the first treatment, so I took one of those gigantic pills they gave me and waited.  After about an hour I decided I was probably not going to die that day.

Today is Sunday and a new day!  I took a shower, did some laundry, and am enjoying my balcony again.  Hallelujah!  Whether or not you celebrate Palm Sunday, I wish you a blessed day. 

Cancer in the Time of Covid-19

Getting hydrated, and wearing a mask for the first time

What a strange time this is!  Most of us are at home.  Day in, day out.  Some alone.  Some with family.  For most people, the thought of getting covid-19 is frightening.  For those of us with cancer, it is terrifying.  Here are some experiences over the last ten days.

  • Hair Loss – most people get their head shaved.  I planned to allow it to happen naturally, until I started finding hair everywhere and realized what a mess taking a shower is.  I decided to go and get it shaved – until I remember the coronavirus.  No point in going somewhere just for that.  Back to watching it happen gradually.
  • I start wearing a mask when I go to Sibley Hospital.
  • Sign-in procedures at Sibley on Tuesday, March 17:  screening just to get into the hospital – they wiped the pen before giving it to me to use; sign-in for genetic testing – they gave me a tissue to hold the pen; sign in for the PET scan – nothing special.  I tried to use a tissue until I realized I had many forms to fill out and gave up.  The geneticist took one look at my mask and wiped clean my insurance card before returning it.  That was nice.
  • Sign-in procedures at Sibley the very next day for my hydration therapy: no pens at all.  They signed me in. 
  • One nurse says she wants my mask since it matches the color of their uniforms.  Another nurse says my mask looks “sexy.”  Hmmmmm.  (The infusion nurses are very nice.)
  • A nurse sees me using their wipes to clean off the table in my room.  She points out that I need to wear gloves to use their wipes.  Oh, maybe that is why my skin is now stinging? 
  • With my mask on, the Face ID on my phone no longer works.
  • Saw the bill for my first infusion – over $14,000.  What if I had a job that disappeared due to coronavirus and I lost my insurance? 
  • I wore my mask when I went to school to video some experiments and freaked out a few students who saw me.  Actually, I saw no evidence of them being freaked out.  Our students are very polite. 
  • I read the PET scan carefully and realize it says my “heart is enlarged.”  One of the chemo drugs is especially hard on the heart.  Before starting chemo, the echocardiogram showed that mine was healthy.  And now it’s enlarged?  After just two infusions?  I message my oncologist to see if there are ways to protect it or if something should be adjusted.  She says that PET scans are not necessarily accurate in this regard, and she doesn’t want to order another echocardiogram since “at this point it’s much more important to minimize your stay in the healthcare system.”  Wow. 
  • Home now for the foreseeable future.  Isolated.  No more hugs from anyone.
  • Friends leave meals for me in seemingly furtive ways.  Is this what it feels like to do a drug deal? 
  • I read an article in the Washington Post this morning that says that people with cancer have a 5x higher chance of dying from covid-19 than others.  And when rationing of ventilators begins, older cancer patients would probably not be very high on the list.  I can’t get this.  I don’t dare go out anymore.
  • I should give up my hydration appointments (where they infuse saline solution directly into the blood stream for two hours).  They were helpful in making me feel better.  All appointments besides blood draws and infusions will be via virtual visits.  Seems complicated to set up.  I haven’t done that yet.  (Since I live in Maryland, my oncologist must be licensed in Maryland.  I don’t even know if she is.  Sibley is in DC.)
  • The feeling of isolation is overwhelming.  I better understand my friend who rarely goes out because she has ME/CFS (chronic fatigue syndrome).  I feel much better once I start having video chats with my colleagues.  Just being able to “see” friends is so helpful.

I hope you are all surviving this time as best you can.

Good News!

It’s been a while since I could say that! PET Scan came back negative. There is no evidence of cancer beyond the lymph nodes. Yay!!!!

Gratitude

I wore my dad’s funny fake-hair hat to school this week.

My feel-good week

I felt almost normal this week.  Until I was reminded that I am not.  I anticipated a good weekend before my next treatment but woke up Saturday morning feeling blue.  That night I started losing my hair.  Then yesterday, Tuesday, I met with my oncologist and got freaked out again. 

Because of what I said to her on the phone last time, she took another look at the ultrasound report and acknowledged that yes, there is a lot of “lymph node involvement.”  She wants to do a PET scan.  ASAP.  That is a full-body scan looking for cancer.  It is important to do that before the chemo has a significant effect, because if there is something elsewhere now, that means that I should have the targeted infusions for the rest of my life.  In terms of scaling back my current treatment, we will talk about that later.  She currently has a patient who is tolerating it okay and has decided to finish it in the hopes that it will do something.  This was all very upsetting.  The scan is next week. 

First hints of hair falling out. It now comes out in clumps.

When I woke up feeling badly on Saturday, I did two things.  I forced myself to walk out in nature (with the encouragement of two friends who can be direct; one even asked for photographic proof that I had done so).  And I started a gratitude list.

Gratitude List

I am grateful for many things, but these are specific to my current journey:

  • Notes of appreciation from former students and their parents
  • Continued check-ins and good wishes
  • Direct and adamant taking away of some of my responsibilities at school
  • Being with me during major appointments
  • Listening to my flow of medical details
  • An offer to come over to pick the remote up off the floor
  • Surprise treats – some sweet (literally or figuratively), some funny
  • Warm expressions of kindness from complete strangers who can sense that something is wrong
  • Warm expressions of kindness from complete strangers who don’t sense anything is wrong, but they are just naturally kind.  They have no idea what their gestures have meant. 
  • Piles of cash and gift cards to help with those mounting costs
  • Accepting that it is okay not to send thank you notes to everyone
  • Being treated in an infusion center that pays attention to aesthetic details and integrative healing
  • Incredibly kind infusion nurses
  • Finding humor in certain desserts
  • Books and flowers that show up at random times
  • Knowing mom is being taken care of in ways big and small
  • Elephants
  • My adjustable bed and comfy chair
  • Shipments of comfort blankets, socks, and stuffed animals
  • Words of encouragement from people who have been there, and from people who have not
  • Cards, both touching and funny
  • Pre-start game night
  • Allowing me to be present but not contributing to conversations
  • Friends travelling across country to help, and those who wish they could
  • My decision to move to a condo with far fewer upkeep responsibilities
  • The day my students all wore pink for me
  • Gifts of chemo hats, purchased and homemade, comfy and funny
  • Listening to my complaints without trying to minimize them
  • Students offering to help
  • Top notch medical system
  • Appreciating my sense of humor
  • “Cuppas” with my neighbor
  • Rides to appointments
  • Imodium
  • Retrieval of my dad’s funny fake-hair hat
  • Lifetime pass to my favorite art museum
  • Hand-made tea mug from a potter I don’t know
  • Ability to get out for a walk, in nature, during my feel-good weekend
  • Colleagues who step in to cover classes and duties, and to grade my tests
  • For Thursdays, when I receive my weekly meals from others
  • Compliments on my hats
  • A dad who asked me how I was doing, just hours before he died
  • The person who spent many hours setting up this blog for me
  • For all of you who read my blog,
  • And the hope that this is all temporary

Compiling this list made me cry.  A lot.  I have not often been able to cry during this horrible year but trying to receive kindness graciously usually provides the necessary trigger.  Thank you all.  Tomorrow, Thursday, I take your good wishes with me to my second infusion.

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.