Cat Hair

I am a cat person. Totally adore my whiskered, razor clawed, little creatures. But in posting about cat hair, I’m not referring to them, or complaining about the fur clumps they leave on my sofa. I’m describing myself.

A month ago I posted a flattering pic of myself, and pal Wendy commented that my pixie reminded her of Mia Farrow! I was quite tickled with that idea. But these last couple weeks I can’t get the hair to do that anymore! It’s gotten too thick to lay down and look wispy. (Don’t worry, I have been warned that I am NOT allowed to complain about my hair being too thick. Got it!) The new hair coming in, creating the thickness, has never been cut, so it turns out to be VERY soft. Did I mention thick too? I described this to a friend and asked her to pet my head, that it feels like a cat. She did, and she agreed! Have your stylist color it to look like a tabby!!! she suggested.

Apparently ‘product’ is the answer … pomade, specifically. Stay tuned, off to the store!

cat hair

Historical hair pics

Oops! New record for lapses in blog posts here.
There’s been so little to report, and so much holiday business.

Perhaps the best thing to do is just post pics.
These are historical, so to speak, and all have to do with ‘hair’ — since the focus of this blog seems to be that : )

1 — 1972.
Me and my brother Bobby, dressed for school! We lived in Manchester, England, that year and had uniforms. I was 12, and my hair was as long as it ever got. I could sit on it. My cousin Dan often remarks that that year I was the most homely kid he had ever seen.

2 — 1973, later that same same school year.
Yeah, Dan probably was right. I’m the one on the right with the stylin’ bobby pins. My best friend Gill, on the left, is a beauty to this day; her little sister Caroline is in the middle.

Remember, this blog is all about hair!
Have to skip the high school pics of hair because I can’t find any at the moment. Skipping college pics too because I haven’t written about those years yet.
Onto pics from the last six months (not previously posted).

3 — 2018 June.
My hair ‘au natural’ when I was using the ‘cool cap’ to try to save the strands. If you’ve been keeping up, you know how that worked out.

4 –2018 later in June.
Starting to thin. Can you tell?

5a — 2018 July.
Texted a friend before and after pictures to show what five minutes, lipstick, a wig, and the right photo angle can do!
BEFORE …

5b — Five minutes later, literally.
AFTER …

6 — 2018 September.
This is a selfie I sent my sister-in-law, Karen, when she suggested maybe I could put a Bam Bam style bow in my hair.


7 — What I’ve been drinking, summer of 2018 …


I will try to write something meaningful soon.
Thanks for staying tuned!
… Kaki

Typo

Two posts ago I typed the wrong word.  
The correct name for the supplement I’m taking is:  L-GLUTAMINE.   
Sorry bout that.  I’ve now been taking L-glutamine twice a day for a week, and I continue to feel SO much better than I have felt in a  long time.  I’m careful about correlating cause and effect because my one week does not constitute a scientific study.  But I think there’s a correlation.  Might even stop taking the L-glutamine to see if my dizziness, nausea, aches, and fatigue return.  But not for a while — I’m enjoying this.

L-glutamine 500 MG

raccoons

Completed a new collage.  
Two raccoons discussing something interesting.   

“Night Vision”

Thank you Carol for getting me back to it.  These guys make me smile.

Doc Week

MONDAY:  NYC
I went to an ‘alternative’ sort of doctor for the first time.  Most of his advice was like:  “Eat whole grains.”  I do.  “Don’t eat processed foods.”  I don’t.  “How often do you exercise?”  Five times a week.  “Good girl.”  He did have a few new items for me, which I am trying:  eat more protein, and, take two  L-glucosamine  L-glutamine tablets a day.  Okie dokie.  

WEDNESDAY:  BOSTON  
Dana Farber:   (1) Blood draw,  (2) MRI of abdomen, (3) CT scan of chest. 
The computer systems were having some glitches.  Staff weren’t able to see which tests each patient needed.  Results weren’t getting to doctors.  Patients were waiting way too long and were grumbling.  Somehow I sailed through.  (1) Blood draw was only ten minutes late, after I bumped into a  blood nurse in the hallway and pleaded my case (nicely).  (2) MRI proceeded, even though I forgot that I now wear a CGM (Continuous Glucose Monitor) on my belly for diabetes.  This device which contains metal parts potentially could have:  ruined me, ruined the MRI machine, or ruined the test results … but all was surprisingly fine.  I apologized profusely for simply forgetting that I was wearing this patch on my abdomen which contains metal … the technician saw it on the scans … he came out mid scan to ‘inquire‘!  Oops.   (3) For my CT scan, I was one of the few patients for which the staff had a printout of my scan requirements … I skipped ahead of several less lucky, patients. 

THURSDAY (today):  BOSTON  
Dana Farber (again):  Results from yesterday  …  ALL OKAY!  
Scans showed the tumors stable.  Not growing.  Not multiplying.  
Blood tests showed both tumor markers went down!  
YAY!  
And, I feel good.  Strangely good.  I mean, STRANGELY good.  Could be the L-glutamine tablets.  Really!      

FRIDAY (tomorrow): PROVIDENCE  
Checking in with my primary care doc to figure out blood pressure meds.  

Long week.  Four days of doctor appointments.  Three different states.  Many tests, many results.  All’s good.  Even the hair.  ONWARD!      


December hair

Crazy?

Since currently my cancer news is infrequent, I keep neglecting this blog.  Sorry.  Therefore, I’ll go back to my somewhat colorful medical history.  There is a lot of it unwritten, so let’s tackle some more diabetes fun.  The last post I wrote about diabetes covered me at age thirteen when I officially ‘got’ the disease.  Since then, well, it hasn’t gone away.

In 11th grade I was starting at a new school and began feeling very strange.  My mind kept wandering, and I couldn’t concentrate on anything.  In the evenings I’d sit to do homework and my eyes couldn’t focus on the book; the words seemed to wander off the page.  Since I had always been a good student it seemed obvious to me that I was losing my mind, so I didn’t tell anyone … if I was destined for  a mental institution, why hurry it?  But I was terrified.  One morning in the second week of school, I apparently did not wake up, so my mom yelled upstairs to wake me.  I then wandered into my parents’ empty bedroom and fell back asleep.  When my mom found me, I was completely confused, pleasantly amused at her concern, and fell back asleep.  My mother immediately called my diabetes doctor, who said my symptoms were definitely not diabetes and that I must be having emotional  problems.  So, mom called a therapist friend who came right over.  He took one look at me and said, this is NOT emotional, this is PHYSICAL.  Give her some juice!  Thank goodness for therapists, eh?!!  Ten minutes after drinking orange juice, my brain started working again;  I asked why I was in mom and dad’s bedroom, and what  the heck was our therapist friend doing at the house so early?

My parents found me a new diabetes doctor!

My insulin doses were adjusted, and I learned that confusion and disorientation are common signs of low blood sugar.  I had just never experienced them before.  There are many different symptoms of low blood sugar (which, by the way, can be life threatening) including no symptoms at all.  I started learning a whole lot more about diabetes.

That first doctor?  Well, he had simply felt it best to just let me be a kid.  He had even told my parents that when I was thirteen.  Oh, they’ll have this disease cured in ten years, he said.  Oy, what an idiot.

SNL hair

Let’s talk hair!  Rebecca, my fab hairdresser,  gave me another trim this week.  She’s great at tidying things up.  So my head has an orderly combination of the old, white hair that never fell out and the new, darker hair.  I could definitely pass as Pete Davidson’s mother!!!  So why can’t I get tickets to see SNL?  Have been trying to do just that, without luck.  If anyone can help …

Me, Pete:

 

Dana Farber appointment last week was uneventful : )

Onward.

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.