Daytime Style

Yesterday I knocked on doors, volunteering for a local politician.  The day started out cloudy and I did not look at a forecast, so off I went with my headband newly arranged in a ‘daytime’ style (no bow at the ear).  Within 10 minutes of being outside, the sun broke through.  It got hot and steamy very quickly, and I got tired pretty quickly, but in total was outside for about two hours.

Trying to fall asleep last night, my head started feeling prickly and a little sore.  OMGosh – I got sunburned?!!  I always slather sunscreen on my face, and neck, and ears, and arms, but I’m not used to this — my few remaining head hairs provide no scalp protection.  Gonna have to google this  — spray on sunscreen?  Time for the baseball cap (ugh)?  Suggestions?



Going Out

Last night I went out … first time in 4 weeks!  Please understand, it’s not so easy to ‘go out’ when your doctor has just told you that the rest of your life will be on chemo, or you’re trying to navigate 14 different side-effects, or your white blood cells have completely gone missing.  Actually, NAHHHHHHH, those aren’t really the reasons.  It was 4 weeks ago that my nurse, Peggy, said I couldn’t drink for a while.  WHAAAAAAAT?  “Your liver function’s off.”    Luckily, last Tuesday my NP, Jen, said, yes you can drink …  just don’t overdo it.  YAYYYYYYY!

So last night my pal Aaron and I went to our favorite watering hole, Tortilla Flats.  It was a bit tricky getting ready.  I tried, but had not finished sewing a ‘cute hat’ (it looked more like a kitchen staff hat – not the look I’m going for).  So what to do?  My bare scalp is very visible, very noticeable through my scant remaining hair — and I don’t feel like drawing attention.  Tried on a baseball cap … also not the look I was going for.  Next, found some old fabric and tied it around my head … okay, better.  Made the fabric into a sort of headband with a bow thingy.  Putting the bow thingy near my ear was much better than on top … which made me look like little bo peep.  Okay headband/wrap/scarfy thing and LOTS of lipstick.  Several earrings too.  Distraction is good.  Excellent, all done.  And it would’ve been fine if the whole thing had stayed in place.  Apparently, when you are unfamiliar with having no hair, practice is imperative!

Before I left the house my sister, Kristen, asked me to send a selfie.   Took the pic and … YIKES … has my nose grown?!!  I swear, with the missing hair my nose is twice as big.  I’ve got dad’s nose AND receding hair line now?  No, Kristen reassured me, it’s just the selfie distortion.

Aaron and I sat at the bar and ate a boatload of food.  I had one fabulous margarita.  The man sitting on my other side, Kevin, started chatting, and he said my hair looked fine, that it really wasn’t noticeable.  He reassuringly grabbed the strands poking out behind my headband.  (Umm,  I’ve done that too, and it feels like you’re grabbing a few pigeon feathers, three at most.)  But Kevin was so, so positive and lovely.  No, he was not trying to pick me up … men do NOT pick up cancer patients, TRUST ME  (more on that subject later!!!).  This man, Kevin, is married and we just have a lot in common – his husband has cancer.  Kevin and I are now Facebook connected : )

So the head wrap got a bit disheveled, and my belly got over stuffed, but the night was great fun.  I’ll keep working on the ‘cute hat’ … might want it tomorrow;  during the day I’m canvassing for a local politician … don’t want to scare  the voters.  : )

BEST!  … Kaki

why does it keep sliding back?


Want to add a quick post about Jennefer — and, I will correct the spelling if I find out this is wrong, but “JENNEFER” was written on the white board.  She was my nurse on Thursday last week in the hospital.  Now, I have to say that ALL the nurses, nurses aids, blood letters, rabbis, and waste basket empty-ers at the hospital were fantastic – down right LOVELY.  But on my last day, Jennefer and I sort of bonded, mostly because we laughed.  She praised my ‘cheery outlook’ and we got talking about why some people can be optimistic and others, eh not so much.  She said to me, “You should write this down,” to which I shrugged.  She added, “It could help someone else.”  Help someone else?  Really?  Nah.  Really?  “Yes!” Jennefer said.

And so after years of thinking one day I would write about my life (of ill health) and many friends urging me too, Jennefer persuaded me.  Think maybe Jennefer and I were friends in a past life   : )

HAIR today, gone tomorrow

Yep, it’s happening, despite best efforts.  At least half of my hair is now gone, and my oncologist said yesterday, “don’t bother with the cool cap anymore, it’s all gonna go.”

And so, how did we get here?  Well, last week happened.

Explanation.  My chemo routine is:  Tuesday chemo, Tuesday chemo, week off.  Tuesday, Tuesday, week off.  Tuesday, Tuesday, week off.  I was so excited to have my first week off (last week) and feel good for a whole 7 days.  But over the weekend I started running a fever.  Then the aches, and the sore throat from Hell.  I thought I just caught a bad cold, but I slid downhill pretty fast.  By Sunday my oncologist prescribed Cipro which I was able to pick up locally – did I mention my cancer team is in Boston and I’m in Providence?  He said to call him any time if I felt worse.  I felt worse.  Monday night he said to come in first thing Tuesday.  When my Nurse Practioner walked in the exam room on Tuesday she said, “Word on the street is that you look like shit!”  (I sooo love my NP.)  By the afternoon, I could no longer walk, could no longer talk, was retching in the nurses’ waste bin, and every time I swallowed even just my own spit, it felt like razorblades going down.  Ended up being admitted to the hospital.  THIS IS SUPPOSED TO BE MY WEEK OFF.  In the hospital I was on IV hydration, IV narcotic pain meds, anti nausea, antibiotics, anti virals, anti fungals, anti anything you can think of.

All in all it was a pretty lousy Tuesday.  Wednesday got a little better.  On Thursday, with a lot of arm twisting, my oncologist and I talked the hospital doctor into letting me go home.  At home, by Sunday I felt ship shape — hahaha, just in time for a new Tuesday!     : )

The very first hair fallout day was that Thursday in the hospital.  My very first blog post was the following day.  Then, I still didn’t know what to expect with the hair.  Yesterday, Tuesday (yep, first Tuesday in my second cycle of chemo) is when my oncologist said not to bother trying to save the hair, he could tell.  He said it’s probably because my white blood cell count got to zero last week in the hospital.  Zero?  Yep, zero he said.  Yikes.  That almost sounds as scary as losing your hair.

So, I guess I move on to sewing some cute hats or something.  Stay tuned!





HAIR two

Quick check-in on the hair front.

Still losing hair today – it’s day three of shedding.

The hair started falling out very suddenly, Thursday morning, so maybe it could STOP falling out suddenly too?  Please please please.  The bathroom waste basket is now half full with a wad of hair that used to be on my head and now resembles a tumbleweed.  Think I’ve lost about 25%.

When hair is attached to our head it is normal, or nice, or even beautiful.   As soon as a hair is unanchored, it becomes gross, disgusting, and makes us shriek if it lands on our plate.  Are we crazy?   Maybe it’s a Darwinian reaction.


Baby Step — HAIR

I’m going to start writing down stuff.  Have said it to myself a million times.  Have been urged by friends a million times.  Committing ideas to paper, or worse, to websites seems so difficult.  Thus, I decided if I just take baby steps something might get done.  Something might come out.

Here we go.

RULE 1.   I only need to write one sentence a week.

RULE 2.  No other rules or expectations.

I’ve been avoiding writing because I should be writing about mortality, morbidity, joy, love, family, friendships    …    But that’s scary stuff.  Thus, HAIR is the first baby step.

My hair started falling out YESTERDAY.  Just yesterday!  Shit shit shit.  Was hoping to avoid this.  Maybe I still will, partly, but every time I turn my head I feel itchy strands falling down my arms.  It’s gross.  Washed my hair last night and big clumps came out in the shower.  Fists full of wet hair lodged between my fingers.  Had to scape the hair off the drain four times to avoid flooding the bathroom.  As I said, this is gross.

I’ve only had two iv chemo treatments so far.  I decided to spend an extra 2 hours at each chemo session TRYING to save my hair by wearing a freezing cold cap plastered to my head.  It’s called a ‘cool cap’ and is designed to reduce hair loss.  “Results vary.”  It’s sort of barbaric.  First you get your hair good and wet.  Then you smooth some conditioner on top — that’s so that it’ll be easier to get the damn cap off after you’re done.  Next you put on a cap that looks like gummy worms had blue babies all over your head.  Not done yet!  Next is the outer, insulating cap — it keeps the cold temperature nice and tight next to your scalp.  This has to be strapped on NICE AND TIGHT.  Maybe others have better luck with this, but I end up with my jowls forming a muffin top over the chin strap.  Finally, the whole arrangement gets tightened a little bit more with the bungie cords.  Now we’re cookin, now we’re ready for TREATMENT!  You get hooked up to the cooling machine half an hour before your chemo doses are scheduled.  There were lots of warnings about how, you might feel pain, you might get chills, you might get dizzy, etc.  So I was super prepared the first time – thermal mittens, fleece jacket, two scarves, and heavy socks.  No chills at all!  Sweating from all my preparedness  instead.  Never felt even slightly cold.  But the pain, whoa!!!  Did’t think I was gonna make it thru the first ten minutes, but I did, and after 25 minutes the pain was actually manageable.  The chemo dosing only took ten minutes.  Then the nurse presses a button on the cooling machine to count your final 90 minutes, NINETY MINUTES, of time spent trying to reduce your hair loss.  Finally, you’re done, sort of.   You have to wait 5 minutes to let the contraption warm up a bit.  If you feel any pulling, wait another five.  After all, you just spent a not inconsiderable portion of the rest of your life trying to save your hair — and we don’t want to F it up by taking the cap off too hastily!  Okay, really all done now!  The cap is off.  Your greasy hair is plastered to your head, except for the frizzy ends that escaped treatment.  It’s quite the look.  When you get home yes, you can wash it!  But only with baby shampoo.  And NO STYLING.    NO STYLING!  No hair dryer, no hair irons, or curling wands, nothing.  Not even product!  ‘Au natural’ is your new look, baby!  Congratulations, you’re now done.


    gummy worm layer
tightening layer