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.
Five weeks ago when I was in the hospital, I got a terrible leg cramp — you know the type — a searing, sharp pain digs into your calf muscle and makes you want to cry. A hospital rabbi was visiting patients that day, and he had just walked into my room. I hopped out of bed grimacing and grabbing my leg, appologetically explaining that it had nothing to do with him. As I limped around we had a lovely conversation, even after I said that I was not a particularly religious person. He was there to offer spiritual support, which he did. The truth is that I am pretty squarely an atheist, but the sort of atheist who visualizes a God-like-entity that is an energy connecting all. So, not faithless.
Chemo number five proceeded as planned on Tuesday — my neutrophils were rocking. Wednesday and Thursday were spent much like previous post-chemo days, unhappily. Exhaustion, queasiness, random pains, restlessness, and depression. The depression seemed so clearly linked with the days following treatment that I decided to look again at the side effects of my chemo drug, Eribulin. Yep, there it was.
The many, many possible side effects are listed in order of frequency. First category is Frequent: low white blood cell count, low red blood cell count, fever, etc, etc. Next category is Occasional (affecting 1-10% of patients): depression, difficulty falling or staying asleep, muscle cramps, increased production of tears, etc, etc, etc.. (Above is just a small sampling, and not including the other two categories Uncommon and Rare.)
So that’s why my eyes have been so watery! And more importantly, that’s why I’ve been questioning whether doing chemo is even worth it. Eribulin is noted for prolonging life by 2 and 1/2 months. Months, not years. Luckily, after the few days post treatment, I seem to rebound to my usual self. But the question is always relevant. Seeing depression on the list is hugely reassuring. Seeing leg cramps and watery eyes is too. I am not a faithless person. I believe in joy and love, laughter and music, beauty of all sorts, and friendship. And I choose to live as many days as possible with these.
(looking up from my bed at home)
In the interest of balance, though I’d include a pic of my morning hair. (yes, it’s standing on its own, no wind tunnel or fan assist)
Tomorrow, a second attempt at chemo treatment number 5. Hopefully my neutrophils will be hardy enough.
Have had a number of just plain weary days. It happens.
Quick THANK YOU, Brad, for sending me an awesome hat!
Between this one, my new knitted caps, and baseball caps collected over the years, I might not need my new wig??! Nah, there are times and events for all. Might have to go to the horse races with this baby!
Yesterday did not go as planned. My white blood cell count was low again. Too low to give me treatment, so chemo number 5 is postponed to next week. Starting next week I’ll also be injecting myself for four days after each chemo with a drug to boost my white blood cell count (crack for neutrophils).
Don’t think I’ve mentioned this in the blog yet, but in addition to cancer, I have Type I diabetes … which yeah, really s*!@ks, but at least I know how to give myself shots. I got diabetes at age thirteen and barely remember life before daily injections and watching out for high and low blood sugars. Thirty-one years after getting diabetes I was diagnosed with breast cancer. My doctor at the time said, “You’ll be at an advantage because of diabetes! You know how to deal with the medical system.” (This was infuriating to hear, even though she was right.) After living with diabetes I thought maybe I’d catch a break and not have to deal with another major medical condition. … As they say, no rest for the weary.
But back to the cancer. More importantly, back to hair! I found a fabulous wig yesterday. OMG it looks better than my old hair, but also looks so much like my own hair that no one noticed when I wore it last night. pics pics pics. Including a ‘before’ picture for comparison.
It is AWESOME how many wig colors and wig styles exist! Could look like almost anyone. (Hmm, why did I choose myself? Shoot. What was I thinking!)
Tomorrow, Tuesday, starts round three of chemo. My fifth treatment. Week seven. I would like my hair back.
Last week was a successful week off, because I did NOT end up in the hospital. Was a little nervous but managed to even ‘go away’ for a weekend with old friends — sort of a reunion. So much fun, and my old friend Susie even knitted me six (SIX!) cute hats. Part of this weekend was spent working on, let’s call it, inner healing. Susie teaches a new-age sort of ‘philosophy’ teaching people about their inner ‘energy’ profile, what it means, and how to live a fuller, healthier life. So we spent time teaching me how to do this. Over the years I have been given A LOT of cancer advice, from herbs, to drugs, to yoga and meditation, to vitamins, visualization, you-name-it. There is little I poo poo outright, and I am willing to consider most advice given by people whom I like. So, this new set of ideas from Susie draws together some techniques I have considered in the past … sort of “visualization plus.” Hopefully I can keep this up because I actually feel better when I do it. It’s sort of meditative, and meditation has been tricky for me in the past.
Tomorrow morning: first appointment is a wig fitting on the 1st floor. Could be fun, could be itchy. I think I want a wig for when I want to blend in to the crowd. Second appointment: blood draw on 2nd floor. Then up to the 9th floor for ‘vitals.’ Then checkup with my NP — hoping to hear my ‘tumor marker’ numbers are getting better. Finally, I re-checkin on 9th floor for chemo. It’ll be a long day.
On the way home I will visualize hair growing back on my head.
I’ve added several ‘explanatory’ pictures to past posts. Like, the gummy worm layer for scalp cooling, and, the Little Bo Peep look for evening head wear. Plus a few others.
Here’s a pic that struck me as a particularly funny suggestion for “daytime” head wear. The “French Foreign Legion style kepi.” Just can’t quite see pulling this one off.
Luckily, there are still many options!
This week was a second Tuesday in a row for chemo. I don’t have a ton of experience yet (this was only my fourth iv chemo) but it seems the second week is definitely tougher than the first week. I spent a lot of time napping and trying to eat more food than I wanted. I have great expectations for next week, my week off … such as, not going to the hospital.
I received some funny responses to the post about my sunburned scalp, so I might have to start adding pictures — maybe next post. (( quick FYI, if you want to ‘comment’ directly on a post, click on the post’s subject, then the post will appear solo and have a comment field at the bottom! ))
Back to HAIR. It is indeed almost all gone, but not completely, which somehow makes me feel better. What’s left behind are all the hairs that had already turned white (my color for graying). My overall hair color had been a dark blonde, so several people asked me, Oh did you dye your hair? Did I WHAT? Let’s think about this — my hair is down to a possy of about 157 members and I’m gonna put bleach on them? That would just be mean : ) No, I’m treating them with the utmost respect, using my “Extreme Volume” shampoo and conditioner to keep their confidence up. Sometimes they even stand at attention. Sometimes I flatten them down and arrange them carefully to cover as much scalp as possible. These hairs are my buddies! I’ve even scheduled a hair cut with my stylist to tidy them up — hahaha, that’ll take her about 4 minutes : )
Definitely pictures soon.
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?
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
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 : )
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!
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.
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.