Tramp, et al

So, last post I mentioned that I was listening to a week long, online, Healing Cancer Summit.  Three discussions per day.  It was truly inspiring and educational.  Totally loved listening.  And, I now have a brand new, personal to-do list!

  • Give up dairy.  (i.e. eat even fewer foods that I already do)
  • Buy, and actually eat, ginger and celery.  (yuck)
  • Release my ‘suppressed’ emotions.  (after I find them)
  • Watch funny cat videos every day.    (  >>^..^<<  )
  • Start meditating every day.
  • Find a higher power.  (oh good lord)
  • And, start jumping on a mini trampoline.

Mid week I went to Dick’s Sporting Goods and bought a mini-tramp.  It’s harder to do than it looks, thank you.  It also feels strange if you’re not used to it.  Most noticeable are my calf muscles which feel tight, and my jowls which seem to bounce twice as high and twice as low as the rest of my face.  Thinking my face looks a little saggier than before?  That would not be helpful.  (Probably just me  : )

I actually do have a new to-do list because of the week, and the above items are actually on it, along with many others.  I’m going for it!

ONWARD

 

 

 

no news is good news

In my very first blog post I committed to posting at least one sentence per week.  It’s been two weeks since my last post, BUT, if you take all the sentences in all the posts and divide by the number of weeks, I’m definitely on track.  : )

Still not much cancer news to report.  (no news is good news.)  I had a routine appointment at Dana Farber on October 11th, and my tumor markers were slightly down (that’s good) and my liver function numbers were slightly better.  I continue to feel much better than when I was on chemo.

This week I’ve been listening online to something called the “Healing Cancer World Summit.”  Its focus is on Integrative Cancer Care, meaning combining western medical practices with ‘alternative’ therapies.  Another focus of this Summit is people who have beaten the odds against cancer; thus, there is a lot of hope bundled into the program.  It’s a week long course with three, hour-long lessons per day, where knowledgeable people discuss their particular topic.  There are MDs, PhDs, Nutritionists, and cancer patients all sharing their knowledge about topics like diet or exercise, nutritional supplements, meditation, mood changing techniques, etc.  It is intriguing, and I have a somewhat different way to focus my energy and feelings about this disease of mine.  Yes!  ONWARD!

 

Thirteen – addendum

Perhaps that last blog entry was my very first Cliff Hanger?!!  It was not intended that way – I just got tired of typing last night, and it seemed like a good break point.

Y’all know I’m here blogging, so y’all know I didn’t expire that horrible night in the hospital.  I do appreciate the comments asking for the rest of the story though.    : )

That first night in the hospital really was horrible.  Every cell in my body was screaming with pain.  Every muscle, every organ, every joint and bone.  The worst part was my mouth, which was so dry and dehydrated that my tongue was stiff.  I remember feeling it with my fingers … it was like sand paper, scratchy, bumpy, dry.  I pleaded for water, but for some reason water was barred.  One nurse said she would bring me ice chips, and I waited and waited and waited.  The ice chips never arrived, and I passed in and out of consciousness.  I was too sick to know my situation; I did not know that I was close to dying.  I was in too much pain to realize anything.  One doctor joked with me that he always got the ‘cute patients’.  Good lord.  I was thirteen, with a big nose and buck teeth.  I had lost 14 pounds, was rail like, and incoherent.  His joking made me both blush and think maybe my situation wasn’t so good.

Some time that night the doctors started giving me insulin.

After a couple days I was moved from intensive care to a regular room in the children’s ward, where I was still somewhat incoherent.  The first night I peed in my bed.  I remember the next morning clearly, because the nurse was perturbed that I had wet my bed … she had to change the sheets.  She clearly had no idea what diabetic ketoacidosis was like.  I was aware enough at that point to know that her job description probably did include sheet changes, and that she was not actually supposed to get angry at patients for incontinence.

I regained strength.  Mid week my mom came rushing into my room with the news that dad would be okay!!!  the tumor was benign!!!   which never happens in the duodenum!!!  Okay mom, great,  but I thought he just had an ulcer.  My brother, Bobby, did not have rheumatic fever.  The cats stopped throwing up.

Next on my agenda was a crash course — Diabetes 101 — complete with injecting an orange with saline solution to practice, before injecting my thigh with insulin for the first time.  At age thirteen I was old enough to take on the full burden of diabetes.  Which I did, when I left the hospital after a total of 7 days.

My first big bounce back.

Thirteen

Yep.  There was indeed one new hair a couple weeks ago.  I named it Judy, after a long lost friend.  Sometimes at night I feel a tingling on my scalp, which feels like new hairs poking through the scalp.  Which might even be accurate.  Now, there’s a whole layer of Judys on my scalp.  Unfortunately this new growth is very fine, barely visible, and only slightly camouflaging.  Nonetheless, it is encouraging.

Not much else cancer-wise to report.  Next appointment is in a week and a half.  So, thought for now, I’d share some medical history.

When I was thirteen, in eighth grade, I started getting really thirsty.  At school between classes I would stop at the bubbler and drink water until the line of students behind me was visibly angry at how long I was taking.  I couldn’t stop drinking.  It got worse over a couple of weeks.  Finally, one Friday afternoon when I got home, I tried to drink water straight out of the kitchen faucet to replicate the wonderful, soothing, long drinks of water from the school water fountain.  But it didn’t work.  That Friday afternoon , water started making me throw up.  My mother, not unreasonably, figured I had the flu.  Off to bed I went.  A miserable night followed.  Saturday was worse.  everything made me throw up and I lost all strength.  At nighttime I asked my mom if I could sleep in bed with her, which I did.  I tossed and turned,  every muscle and bone aching.  By Sunday morning, mom knew something was really wrong.

Poor mom!

Dad was already the hospital – with stomach problems that had been worsening for an entire year.  They had thought he had an ulcer, but unbeknownst to me, a new doctor had already told my mother that he was dying.  He had duodenal cancer, a death sentence.

Besides my dad, mom’s mom, grandma Weezie who lived with us, had been diagnosed with Adult Diabetes just the week before.  Her first home visit with a teaching nurse had been one day earlier, Saturday.   Mom had to absorb the fact that her husband was dying, but also her mother was in a really bad medical situation, and needed close care and supervision.

Not done.  My brother, a year older than me, had had mononucleosis for two weeks.  The week that I started throwing up, he developed sore, swollen knees and his doctor told my mom that he feared the disease had turned into rheumatic fever.  Tests were ordered.  One more – my sister that same week was diagnosed with a chronic stomach disorder.  Nowadays we might call it IBS; back then it was considered a bewildering, chronic ailment.

Poor mom.  As she described that week — EVEN THE TWO CATS WERE THROWING UP!

On Sunday, after my sleepless Saturday night, I could no longer walk so crawled from my parents’ room back to my own.  Mom was trying to get hold of a doctor on the phone.  After being left on hold for an hour (this was before cordless phones, never mind cell phones) she came upstairs to check on me.  I was incoherent.  Somehow she found a doctor to come to the house.  He examined me, smelled my breath, and pronounced that I either had diabetes or gobbledegook (something I can’t remember).  I was hoping for gobbledegook, because thanks to Weezie’s diagnosis earlier in the week, I knew diabetes was BAD.  The doctor called an ambulance, and my mother directed the driver to bring me to Miriam Hospital — because that’s where her husband was  —  would make visiting hours easier.

Poor mom.  Upon arrival at the hospital, she asked the admitting doctors if I’d be okay.  They said … we’ll do the best we can.  While filling out the admitting paperwork, a doctor rushed up to the counter next to my mom, handed another person a vial of blood, and said, get this through the lab QUICK, name’s Accola.  Mom said she almost collapsed.

 

Quick Update – Hair

I posted a ‘quick update’ and neglected my hair??!

While at DF on Monday, even my NP was surprised that my hair had not started to come back.  UGH, we both sighed.  She added, reassuringly, that she’d never had a patient not regain hair after Eribulin ( my last chemo).  Thinking for 3 seconds longer, she added, but I’ve never had a patient go directly to Abemaciclib after Eribulin.  Abemaciclib can cause fairly dramatic hair thinning.

Oh great.

Wednesday though, I found one.  A new hair!  It’s a quarter of an inch long, so definitely new growth.  Front and center on my head.  Feeling hopeful!

Quick Update

I’m still taking the oral drugs.  It’s been over a month, which means thankfully there are no chemo infusions to deal with, for now.  I went to Dana Farber on Monday for a check-in and had my usual blood work.  The ‘tumor markers’, two blood tests which are done each time, are always something to anticipate.  This week, only one of the markers showed up on the computer screen before the end of my appointment.  My “CEA” number was way up — not great.  Hmmm.  However, my liver function numbers were down to normal — fantastic since the cancer we’re worried about is on the liver.  In general I feel pretty good.  I can for the first time in several months complete my normal exercise routine.  During chemo treatments it was not possible to finish 35 minutes of step aerobics (my chosen form of daily torture).  My NP and I decided to no longer pay attention to my tumor marker numbers … … even if your “CA-15-3” number is high, she said, I’d pay no attention.  Apparently the tumor markers sometimes correspond closely to disease progression and other times do not.  Since last month my numbers were down while the scans showed my cancer growing, we decided that my tumor marker numbers are no longer big players in deciding what course of action to take.

I guess that’s okay.  I just happen to be person who likes numbers.  I love numbers.  They swirl around in my head often.  My dad was a mathematician and I take after him, to some degree.  But I suppose I can learn to pay less attention to these numbers.  We’ll see.

 

 

Seinfeld

It’s been two weeks since my last post.  Without ongoing chemo there seems to be a shortage of drama my life.  My next Dana Farber appointment is in four days, and it will have been a month since I was last there.  I’ve been taking the pricey new drugs.  Nothing bad has happened (that I know of).  Let’s just call this writer’s block.

A friend-of-a-friend who has been reading this blog looked at other pages on my website.  (Who even knew there were other pages!)  She liked my collages and asked me to create one for her.  Which is great, it’s flattering, and it makes me remember a Seinfeld episode:  Elaine’s boyfriend artist is near death … George decides to buy some of the guy’s paintings since the price of dead artists’ work goes up … the sick artist unexpectedly recovers!  … George never wins.

I was supposed to have a proposal to this friend-of-a-friend last week, but I’m still trying to figure out how to approach the piece.  Can I create it without cuteness?  With new insight?  This is important.  I lie in bed imagining I’ve created collage of a raccoon that says something.  Let’s just call this artist’s block.

Regarding cancer, question marks in my head prevail  …  what’s going on with the tumor growth?  What’s going on with my lack of hair?  What’s going to be next on my agenda of medications?  Regarding life, more questions  …  can I be imaginative?  and creative?  and, am I worthwhile?

The answers:  who knows, it’ll grow back eventually, who knows, yes, I have a raccoon idea, and yes.  Carol, I’ll get the proposal to you asap.  Sorry for the delay, and hopefully you’ll be as unlucky as George.

birthday!

Saturday night a group of wonderful, close friends took me out for a birthday dinner.  Ahead of time I asked one of the friends to tell everyone, no presents.  She replied, I already got you a present, so suck it up, you’re getting presents!  Ha … I got really great presents!  And two birthday cakes!

Monday, my actual birthday, was spent on Block Island being treated to brunch, shopping, boating, and cocktails.  Sunny, relaxing, perfect.

Tuesday another wonderful dinner, with a bottle of excellent champagne.

Even today, Wednesday, multiple presents arrived in the mail.  Yikes, this amazing birthday has stretched on for five days!

What I was hoping to get on my birthday is my hair back, but nope, still no sign of it.  I wore my lovely wig to the dinner party.  I wore it the entire day on Block Island.  I wore it to the store, to the bank, to the car wash.  But it is hot, itchy, and slippy in this summer weather.  The minute I get home …

ONWARD!

What a pill

Last week my onco doc prescribed new meds … two different pills to take each day.  The pharmacy at Dana Farber could have filled the Rx that day, Wednesday, but NOPE, my health insurance requires the meds be filled by their ‘specialty’ pharmacy.  The prescription was sent to them.  I called  the specialty pharmacy the next day, Thursday, to check, and they said, oh yes, we have the prescription — just have to ‘process’ it, hopefully by the end of the day.  Okay, I’m thinking, they can overnight the meds so I can start Friday!  NOPE.  Friday morning still ‘processing’ the order.  Well okay, if they overnight the pills for Saturday delivery I can start then.  NOPE, by end of Friday, still ‘processing’.  That of course brought me to Monday — I called the specialty pharmacy twice and my insurance company three times.  Hours on the phone, mostly on hold.  NOPE.  “Still processing.  It’s in the cost overrun department now.”  My mind is spinning  …  scans showed my cancer is spreading and growing … and insurance is ‘processing’ my prescription?  I’m picturing weeks of my life slipping off a timeline.  It was not until Tuesday afternoon that I got the call saying the meds would be delivered the next day, one week after I could  have picked them up at Dana Farber.

Why all  of this?  One medicine is insanely expensive, $12,000 per month.  Yep, my onco doc said it costs $144k per year.  How do drug prices like this even exist?  And the ridiculous price tag makes me pause.  Do I deserve this drug?  Is my life worth prolonging?  Real questions.  Then I remember the drug is intended for women like me, my age roughly, my life expectancy.  If I’m not worthy then who is?  (phew)

But why the delay in getting the medicine?  I imagine someone at the insurance company running numbers and finding that if each woman needing this medicine is delayed by one week, they would save X number of dollars per year.  Go ahead, call me a skeptic!  My anxious week of waiting was frustrating and demoralizing.  So I came up with a plan.  If insurers actually are delaying/preventing access to needed medicine, I would have no qualms about changing my living will (advance directive) to state that I want all means used to prolong my life when I am near the end.  I have thought that spending tens of thousands of dollars to keep an almost dead person alive is a waste, but if insurers are not playing a clean game, then insured people could ‘encourage’ better behavior.

The meds arrived Wednesday, early!  UPS woke me up, but that was okay.  My anxiety evaporated.  I opened the box … packaged prominently with the meds were three boxes of anti diarrhea pills.  Yikes.  I was told that diarrhea is a common side effect, but this packaging was unexpected.  My poor GI — for the last few months on the chemo, constipation was a side effect and  ‘loosening’ pills were prescribed.  Now the opposite?  My GI is going to be so confused.   Hang in there large intestine!

What a pill.

 

 

Bounce

Bouncing back has been my routine.  It’s what I do.  After getting diabetes at age thirteen, and after many other medical tribulations, I have always simply bounced back.  I’m not even sure why or how.  Just happens.  My mind says to itself, well, it’s time to get on with it  …  wallowing feels super crappy.

This cancer predicament is a new challenge to my bounce-back ability.  Feels like a big test.  But I’ve always done okay on tests.  It only took a few words to restore my outlook this last week.  On Wednesday my onco doc said that, yes, my tumors are growing in size and number, BUT, they are still small (that, of course, is compared to what he has seen).   Okay, I like any good news.

The cancer I am dealing with is breast cancer that has metastasized to both the bone (my sternum was the first site) and now the liver.  The liver is what we’re watching.  At some point the cancer may impede the livers ability to function, and that will be a drag.  But right now, my liver function, while not 100%, is pretty sturdy.  And, I’m getting a little vacation from chemo.  I’ll be taking a couple hormonal drugs for a while.  Will feel like a cake walk!

But lets return to the important stuff.  My hair is still a see-through, messy scattering of white hairs standing on end, with my shiny scalp showing through.  Oy!  While my wig is super flattering, it’s a pain in the neck to wear, sliding around in this summer heat.  I save it for “evening-wear” mostly.  Baseball caps are the easiest attire for trips outside the house, and oh, I am so not a baseball cap sorta gal.  Oh well, am now : )

I’ve been assured that my hair will return.  And while I’m on break from chemo, I’m hoping the onco researchers are working overtime.  Because I am!

ONWARD!

Today’s medicine

My medicine today is champagne, instead of chemo.

Not because there was a  yippee or yay worthy event.  Rather, there was an, oh sh$%t sort of event.  Champagne seemed right.  I like champagne.  And I had a bottle in the fridge.

When I go to Dana Farber for a cancer appointment and my NP, Jen, walks in the room without a smile on her face, things are not good.  Today, no smile and the news that last week’s scans show my cancer is progressing.  Existing tumors are a little bigger and there are some new ones too.  So, this chemo that I’ve been on, which landed me in the hospital, then obliterated my hair, and made me weary to the bone  has had no significant effect on the cancer cells.  How could that even be?

Tomorrow, a talk with my oncologist to decide what route to take next.  A different chemo of one sort or another.  Each cancer treatment I undergo carries me to the next.  The longer I last on each, the longer I stick around.  This short stint on Eribulin is disappointing, to put it mildly.

Will there be a clinical trial with the magic, silver bullet?  In my lifetime?  That’s what we’re hoping for.  But, I remember when my father was dying from Parkinson’s Disease, he asked if there were any clinical trials he could participate in.  The answer was no, and from there he sank.  But there are new immunotherapy drugs being developed for breast cancer as we speak.  Will I make it … who knows?

I will continue on as before, trying to focus on things that make me happy.  It is sometimes simply impossible.  Despair is unavoidable.  So, trying to change the percentages, tipping the balance towards more joy than despair is the game I’m in now.  Good champagne helps.

 

PS – No, I did not drink alone!  Well, okay, the first glass, yes.  Thank you Alison for drinking the rest of the bottle with me.

like alcohol

Last week was the first time I had chemo and didn’t feel horrible afterwards.  The days weren’t exactly normal, but they weren’t terrible.  My friend Rex called to inquire and when he heard the update said, well maybe ya build up a tolerance, like alcohol.  Oh Rex, I wish chemo was like alcohol!!!

Also last week I decided to ask my oncologist the question:  How long?

I think your chance of being around in a year are almost a slam dunk.  Your odds of being here in two years are pretty darn high, probably 80%.  In terms of 5 years, I think the average person like you would only rarely be around in 5 years.

This is not a favorite question for doctors, and not a favorite question for patients either.  I had been thinking 2-5 years, but hearing it was very, very different.  Made it real.

This week has been an off week, no chemo, but scans instead (CT and MRI).  No big deal, just a big amount of time.  Next week, on Tuesday, I will get the results.  Next Tuesday I will also get chemo again — hoping it’s just like a double martini with olives.

eyebrows

A few days ago I made a teeny little mistake on Facebook.  Here’s the background  …  A week before my first chemo I went to a tattoo parlor where they specialize in ‘permanent makeup’ to have my eyebrows tattooed.  The woman who tattooed me, Amie,  gave me perfect eyebrows that look, well, they look not tattooed!  She draws individual eyebrow hairs in a couple of shades of color and the result is brilliant.  (My daughter who is a good sleuth found her : )    So, I wanted to thank Amie on her Facebook page and wrote a paragraph describing my pre-chemo tattooing and how happy I was.  I pressed ‘post’.  Immediately Facebook friends started telling me how sorry they were to hear about my cancer, they had no idea!  Whoops.  My review popped up on my own timeline rather than Amie’s timeline.  Sigh.

I’ve never hidden my cancer, but I had also never talked about it on Facebook.  But the little mistake maybe was a good thing …  here in this blog I have talked about my hair falling out and I’ve posted pictures of myself without ever mentioning why my eyebrows were still looking so snappy.  Now everyone knows that they too can have great eyebrows just by visiting Amie.

Now I get to throw in a complaining paragraph.  With all the hair loss, why are those darn little chin hairs are still saluting me every morning?  And why after all the hairs on my left arm have disappeared are there still three inch long stragglers on my right forearm?   Oy!  And, I’m losing some eyelashes now … might have to try falsies.

I did move my ‘thank you Amie’ review to it’s proper location, and also invited my Facebook friends to peek at this blog if interested.  Welcome new blog subscribers!  I will try to keep your interest up.

Onward!