Thoughts

I’m making decisions, every day, like all of us.   
One factor in decisions now is my doctor’s prognosis, … if I’m only going to be around for 2-5 years, then … ?  Contrarily, I mull over how weirdly good I feel and think, … oh, that 2-5 years thing doesn’t apply to me. 

So!  I made a decision to install a bathtub in my bathroom. Then I decided, what the heck, while I’m at it, why not add a half bath to the apartment!  (My daughter thinks that one is overkill.)  But, if I’ve got limited time, I’d like to have a nice soak — yes!  And, since more friends and family seem to be visiting, a half bath will make all of that easier — yes!  However, a rather frugal mom raised me, so maybe these home improvements are unnecessary? Wasteful?  Nah, even mom spent money before she died.  Okay, her big splurge was on a new vacuum cleaner, but same idea.  I’ve decided to view my splurges as extra happiness, which will last for years.  How many years doesn’t matter.  

Meanwhile, my apartment is a dusty mess.  My bedroom is now a dumpster.  The bathroom is missing walls.  A mountain of clothing is stacked on the dining table, now my bureau.  I’m sleeping between Harry Potter books and One Direction posters from my daughter’s younger years. 
And, all this is okay -– I decided to be unflappable! 

Onward!

Back in October I wrote about the online ‘Healing Cancer Summit’, which I listened to all week and found to be very powerful. There was a lot of information, and I was totally psyched after its completion. During the program several speakers mentioned the name Louise Hay with great affection and admiration — she had founded the organization which was sponsoring the Cancer Summit and she had recently passed away. At the end of the seven days I was feeling very hopeful, but was also wondering how long I would stay focused on my new to-do list and how long I could keep my positive outlook. I went into my bedroom with the thought of reading — I often plan to read at bedtime but put my head straight on the pillow instead. Reading that night would be a good start — doing something positive which I might otherwise postpone. By my bed I keep a stack of books, about a dozen or so, that I hope to get to. I lifted the top book which I had already started and was enjoying — underneath it, the next book in the stack, was written by Louise Hay! I saw it and felt shivers. I have no recollection of where the book came from. I don’t remember buying it. Perhaps someone sent it to me? But how did it end up in the stack by my bed? A month earlier I had been sorting through bags full of books, some mine, some my parents’. Perhaps it had been in one of those bags and I moved it to my stack? I do not know. But that evening the book’s appearance was bizarrely poignant. I don’t really believe in the saying ‘it was meant to be,’ but this seemed ‘meant to be.’

Instead of continuing Trevor Noah’s autobiography that evening, I read Louise Hay. Her philosophy was not entirely new to me, but her ‘technique’ was. She has a method for becoming the sort of person you’d like to be, which includes reciting self affirmations and occasionally looking into a mirror and saying, I love you. (That one is hard — try it!) All of it feels a bit hokey … I’m a numbers person, I have a college degree, I used to teach computer courses. Surely I’m above this?

However … I continued to read and recite and occasionally look in a mirror. Some of Louise Hay’s words applied directly to my task list from the Cancer Summit. For instance, how to let go of suppressed/negative emotions. Her advice along with my new habit of meditation were miraculous. It all seemed to fall together — things were working out well. Go figure.

Back in October after the Summit, my to-do list looked like this (now with checkmarks added):

• Give up dairy  — I gave up most but not all. Good enough! Done!
• Buy, and actually eat, ginger and celery  — Bought both. Ate celery for a month. Ginger root is still untouched in my fridge.
• Release my ‘suppressed’ emotions — Done! This has probably been the most powerful.
• Watch funny cat videos every day.  — Not actual cat videos, but I am smiling every day, which was the intention. Therefore, done! (And a few cat videos have indeed been observed. They are the best!)
• Start meditating every day — Done!
• Find a higher power — Done, sort of, much to my surprise!
• And, start jumping on a mini trampoline — Tried but it just hurt too much. I’m sticking with my usual exercise routine and adding a little bounce in it : ) Done well enough!

There! I feel good about that list.
More importantly, I feel good in general. Weirdly good. While I do have cancer and diabetes, the side effects from meds seem to have virtually disappeared. My mind is positive and clear. I can complete a full exercise routine. Again, this all seems weird. I continue with reading, recitations, meditation, and smiling. The trick now is to keep myself from asking, when will all this goodness end? That negative thought does creep in, and I’ve consciously changed the thought, chased it away. It’s possible. I do not need to spend time thinking about that. As my friend Karen says, worrying is like praying for the bad thing to happen. Louise Hay wrote that what you think, you become. Somehow, at the age of 58 I’ve learned how to change my thoughts. The result is fascinating.

Onward.

After college my first job was with IBM. Mondays through Fridays were spent in a cubicle. I gained fifteen pounds. I was not feeling great. It was time! … time to do something about diabetes. For the first ten years of diabetes some people, like me, can get away with almost ignoring it because the pancreas is still contributing a little. By age 23, it was getting hard for me to feel okay. I knew that The Joslin Clinic was one of the best diabetes centers in the world and that it was nearby. But I was terrified; I had ignored my disease for so long I was scared about what a trip to Joslin would reveal. One day I finally got out the phone book, looked up the number, and dialed to make my first appointment. My hands were shaking.

Indeed, blood tests showed that my blood sugars had been way out of control. The new doctor said I would have to take two shots a day instead of the one morning shot I was used to. This meant that I had to think about diabetes at least twice a day, something I had resisted for years. AND I had to start pricking my finger several times a day to test my blood sugar level. BIG changes. It was scary … but there was no other choice.

My doctor also suggested I enlist for a week long hospital stay at Joslin, which was a fairly common practice back then. Many patients would be together for this experience. Educational classes were held all day, and doctor visits, nutritionist meetings, and exercise plans were all part of the week. There were nurses to test our blood sugar many times a day, including in the middle of the night … they would tip toe into our room, prick our ear lobe to get a blood sample, and leave … sometimes without even waking us up. My parents came to visit while I was there, and I broke down in tears. I was so scared and frustrated being there. My father offered advice … that being in a hospital makes everyone feel helpless and child-like. He nailed it … helpful words.

By the end of the week I had new friends who shared my disease, and we kept in touch and supported each other for many years. One time my friend Ken and I met for dinner after work. Since he also had diabetes, I thought nothing of discreetly taking out my syringe, filling it with insulin, and sticking it into my leg before dinner. We were, however, sitting at a table by a large picture window facing a busy Boston sidewalk. As I injected my thigh, two men walking by outside stopped in their tracks and stared. I panicked thinking they were going to come into the restaurant, flash a badge, and interrogate me about the syringe. Instead one of the men reached into his suit pocket, pulled out his own syringe and vial of insulin, and waved them at us gleefully. Ken almost spit the roll out of his mouth! We laughed, the passersby walked on, and some of the other restaurant guests looked a little puzzled.

This was all in 1983. My hair? Eighties, sort of punk-ish, of course.

In college my major was Biology & Medicine. For various courses I would focus my research on diabetes since it was appropriate coursework and extra interesting for me. These were the days before the internet, and before Google searches. Looking up medical information was a tedious task in the Science Library. Sophomore year, researching for one particular paper I found an algorithm to determine the life expectancy for a patient with my type of diabetes. I plugged in my own numbers and discovered I was expected to die at age 55. I was 19 … and stunned. No one had ever mentioned how much my life would be shortened. When I was 13 my doctor told me to just be a kid. Yes, I knew diabetes was a nuisance, shots and all, and I knew there were possible complications, but I didn’t think they applied to me. This new information was a number, calculated for me. I ran over to my friend Rex’s dorm, told him my findings, and sobbed. I don’t remember our conversation, no doubt Rex came up with something funny to say … but the new reality started sinking in.

At age 19 however, 55 was a long way off. I decided to still pretend my disease was no big deal, for a while. I’d tell myself, I’ll take better care of it after college. Later, later. Back then, there were no finger pricks to test blood sugar five times a day (a mainstay of current diabetes management). Instead the only home test was urine testing — I had a little kit with test tubes, eye dropper, tablets, and a color chart to compare results with. Urine testing was time consuming and basically useless. My results were always either ‘NEGATIVE’ meaning my blood sugar was way too low, or ‘4+’ meaning my blood sugar was way too high. I barely ever bothered to test, so it was pretty easy to ignore diabetes most of the time.

I’ll get this disease figured out later.
Rex, let’s go get donuts!

Numbers. I mentioned earlier that I like numbers. I really do … we get along.
And with cancer, there are lots of numbers to look at: tumor marker numbers, liver function numbers, white blood cell counts, etc. A few months ago my NP and I decided we were not going to pay attention to my tumor marker numbers anymore, because the numbers were up (not good) while my scans showed the cancer as steady. Best to just ignore the tumor markers, since they didn’t seem to be very ‘telling.’ This happens sometimes, she said, the numbers just don’t correlate.
Fine, we’ll ignore them.

But yesterday at Dana Farber my tumor marker numbers were down, and we decided to be really happy! So it’s more like … we’ll pay attention when the numbers are good, ignore them when they are bad.
Okay : )

So that blog readers have some perspective … one tumor marker is called the CA-15-3. A person without cancer would have a CA-15-3 of less than 25. A year ago my CA-15-3 climbed to 55. Yikes, that’s more than double normal. A month later it was 90. Another month and it was 248. This was scary. The following months, 1400 then 2212. At 3520 my oncologist decided it was time to start chemo. Remember my chemo phase last summer? Not pretty. I was sick half the time, lost my hair, ended up in the hospital, white blood cells got to zero. But I plugged along because that’s really all you can do. Then 4448 followed by 5026. At that point a CT scans showed visibly that my tumors were still growing, and my oncologist stopped the chemo — it was clearly not doing the trick. Next treatment chosen after chemo was the pricey oral drugs which I am still on now. My CA-15-3 numbers started going down. 4856 … 3950 … 3602 … 2574. And yesterday … 1945!!! THAT is so much higher than 25, but also so much lower than 5026. EVERYTHING is relative, and today 1945 is a great number.

This whole cancer ordeal feels a bit like fighting a dragon. And the dragon is still there. It’s not going away. We all know that this dragon will eventually win, but yesterday and today I’m kicking it’s ass. And that makes me happy.

Over the last couple months I have started to feel quite differently about life, and about cancer. The most important thing I’ve done is to release negative energy from my mind. When I sat down and thought through everything I was holding on to that was negative, about other people or about myself, there was a lot. Finding a way to let go of it all, was astonishing. Partly I’ve used meditation – yep, I’m still doing it, ten minutes a day, and I’m not terribly good at it, but I’m doing it. I have a meditation app, and the man’s lovely voice in the app is soothing and inspiring. And partly I’ve used self-help books. Lots of slightly embarrassing reading.
Three months ago I was not aware that letting go of negative energy was so important. Now I am. I feel different, and whether or not I live longer, I feel better. I like myself more.

Of course, there are still days, that are total downers. For instance, the day before a Dana Farber visit is always a murky time for me. Two days ago, before my DF visit, I realized I was feeling crappy and reminded myself that it was okay to feel crappy. No one feels good every day. No one. Crappy days are inevitable. You just get through them, get to the other side, and carry on. How to ‘get through’ — that’s the question, and I’m not sure what the answer is, except sometimes just remembering that it’s okay to feel shitty helps. And here’s something I use when I can’t get to sleep or when my neck aches lying in bed. I tell myself that I am sleeping on a mattress with springs! That I have clean sheets and no bed bugs. I do not have lice. I have central heating and indoor plumbing. That, in fact, I am living in more luxury than most royalty have lived with in all of humanity. And I live with more luxury than most of the current world too. … … Even if cancer kills me tonight, this bed is damn comfortable!

Not sure how to conclude this. Skeptics might smirk at what I’ve written today, and dismiss me a shiny, happy person. But I consider myself a skeptic, so maybe I am smirking at myself too.
And today I get to smirk at the dragon and the numbers.

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!

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

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.

Completed a new collage.  
Two raccoons discussing something interesting.   

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

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!      

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.

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.

My first celery smoothie.  I drank it and now feel, well, virtuous.

 

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

 

 

 

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!