Yesterday was Dana Farber. Except for having to spend TWO AND A HALF HOURS in the waiting area, the appointment was faaaaannntastic. Blood draw showed my CA-15-3 tumor marker was down to 840!!! The normal range for that tumor marker is 0-25, but my last number was 1945, and it had been up to 5026 last year.
Icing on the cake, yesterday my super hero, who has doctors in adjacent buildings, was in the same place, same time.
As of late Friday the tub and tile are in! WOO HOO! So, Saturday I took a bath — first in a long, long time. Swished my hair through that water so many times – it was GLORIOUS!!!
However, because the shower curtain rod is not here yet, I only took a bath, no shower. Which means, my short crop of hair was washed in the tub – a procedure I’m not currently well informed on. But I figured, no big deal, before it dries I’ll just put in some hair goop and be on my way. I ran many errands and then stopped for a quick dinner at a favorite spot — ended up spending two hours chatting away at the bar. When I got home and saw my reflection in the mirror … oh good lord! It looked like I had put my finger in an electric socket. Every hair on my head was standing on end, sticking straight out. The dandelion-gone-to-seed look. Oh, the hazards of bath tubs.
Sunday I found some duck tape and a bunjee cord, and voila, temporary shower curtain.
Still fixing my hair.
Joanie and I have been friends since we were 23. We met at a party in Boston, and discovered we had gone to the same college and even graduated the same year! At that party we stared at each other and each said, I don’t think I EVER saw you on campus! Guess we moved in different circles. Still, Joan and I became immediate friends. One reason became apparent the second time we met and got talking. Joan grew up with, and still lives with, Cystic Fibrosis. I’d had insulin dependent diabetes since 13. Ha! – chronic illness was a bonding point! While our diseases were different, the stresses they produced were similar. Joan and I both viewed our lives very positively, despite our conditions. Both CF and diabetes are SERIOUS — it’s easy to despair, and we each knew others suffering with our diseases who lived with great despair. Joan and I would mull over why it was that we were able to feel positive while others could not. Was it because our individual diseases were a bit easier/less serious, or were our diseases easier because of our positive attitude? No one can really say. I cannot criticize people with diabetes who are pessimistic as their disease causes great harm. And I do not claim that my doing well with diabetes is because of a positive attitude. Joan feels the same about living with CF. I should add, both our diseases are tough, but CF is much more serious, and Joan is a super hero. She is devoted to curing CF as a volunteer and professionally, and her ability to look pain in the eye is astonishing. She somehow manages to accomplish more than most people without any ailments. One example: how many people reading this have run a marathon?!!
Four years after we met, when we were 27, Joan got diabetes! No, no, no, I shrieked! No, no, no, you already have enough to deal with! But yep, Joan had to start taking shots, testing her blood, and balancing her food, exercise, and insulin same as me. And she still had to take her many, many oral medications for CF and do periodic physical therapy to clear her lungs. In a way I felt guilty, I only had diabetes, and Joan now had my disease as well as her own. At least I was able to help out a bit — teach her some diabetes tricks of the trade. To this day we still compare notes on diabetes stratagem!
Fast forward to age 50. I’d gone through my first battle with breast cancer six years earlier, and all the doctors predicted I would be fine. But just after I turned 50, my oncologist made that evening phone call to tell me that my cancer was back, now metastatic. My first question: can it be cured? No. Once it has spread from the original cancer it does not go away. But you can live for ‘many’ years he said encouragingly. Many? How many is many? The answer: five, ten, fifteen years.
Fifteen did not seem horrible, but gotta say, five years did NOT seem like ‘many’ frick’n years.
It was not easy getting used to the idea of cancer again, this time, a cancer that was not curable. Some people like to label metastatic breast cancer as a chronic illness, thinking that sounds encouraging. Oh boy, another chronic illness! When I told Joanie about it, she shrieked — No, no, no! How unfair! You’ve already had enough to deal with. No, no, no.
Ah, me and Joanie and our chronic illness count.
Hey Joanie, guess what? I think I’ve one upped you. I win! Or are we tied again : )
ONWARD for us both!
The tub is going in today! Then tile, then fixtures and paint, and then finally I will soak! The impetus for installing a tub came from my many trips to Dana Farber — when I get home, I’m usually exhausted and ache to sit in a deep bath. Since my apartment was tub-less, I shopped around and found the teardrop shaped beauty getting installed today. I CANNOT wait to lean back and dip my head into warm water. Haven’t felt my hair swishing around in water for a long, long time, and I HAVE hair now. It’s time.
At my sister Kristen’s urging I will now also describe my new toilet. Not the toilet actually but the seat. I ordered a bidet toilet seat … google it if you’re not familiar. Our mom had a bidet from the time I was 12 until she died. I actually never tried it … seemed sort of personal, but mom loved her bidet. So I decided, eh, maybe I’ll get one. Research followed, and, OMGosh!!! Mom!!! if you knew what was available today!!! Heated seat, with night light. Separate, position-able nozzles for what they call rear and lady washes. Micro bubbles in the spray. Adjustable water temperature and pressure. Massaging/oscillating cleanse. Heated air dryer. Self sterilization for the nozzles, and a charcoal deodorizing filter. THIS is going to be an experience!
Quick question: ‘rear’ and ‘lady’ wash? Really? I’m gonna guess that a few men might take a spin at the lady wash cycle with the ‘massaging/oscillating cleanse.’ Just a guess.
My contractor Steve is predicting that first time I have a party there’ll be a line outside the bathroom door. ‘Hey Susie, hurry up in there.’ No one will ever leave the party.
Will let you know.
ONWARD : )
There is nothing to report from my trip to Dana Farber yesterday. My NP, Jen, walked into the room without a smile; luckily, it wasn’t her bad news face. This was her frustration face. The lab did not do the tumor markers. I can see them on my order, and I can also see that the lab slip did not have tumor markers on it. This has happened before, and I’ve spoken to them before. Not sure who ‘them’ is, but somewhere along the line the order to check my tumor markers disappeared. Regular blood work was done though. Nothing new to report: liver function, still good, neutrophils, low, but good enough, etc, etc.
Back to DF in five weeks.
Hopefully no snow then. Here’s what the morning drive looked like yesterday. Not too, too terrible.
Whenever I have an appointment scheduled at Dana Farber, I spend a good chunk of the day before feeling anxious. Today’s that day of anxiety! Tomorrow, Thursday, I go to DF — first time in seven weeks, which is the longest gap between appointments for me in years. The appointment was supposed to be scheduled for last week, but my doctor was out of town, so it was pushed to this week. Because of that delay I get the added bonus of snow! Two to four inches forecast for tonight, just in time for my morning trek to Boston. Arghhhhhh.
Luckily, distraction can work wonders, and focusing on others is marvelous. Today I had great, good luck with that … Michael Cohen was testifying to Congress all day! What a relief to ponder other peoples’ lives. Thank you Michael and thank you Donald — y’all’s problems are making tomorrow seem like an appointment to get my nails done.
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):
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.
