The trip up and back to DF today was quite efficient, record time! — but the numbers could have been a little more cooperative. My ‘important’ tumor marker number is headed in the wrong direction, meaning, scans in a few weeks then probably new meds. During the appointment Jen said, ya know that there are no medals given for suffering through pain! (Have I mentioned my sternum has been rather ‘uncomfortable’ for a few months?). She encouraged me to go home and take the narcotics she prescribed last year. I did. Nothing! Nada. No high. No smiles. No silliness. Barely even any change in the pain. So what’s a person to do? Have a glass of scotch, obviously, and then head for bed.
But first, quickly, Merlin was a bit miffed that only Cleo got a glamour shot in the last post.
One more random thought that came out of my mouth today (Kristen said, put that in your blog! ) It REALLY really doesn’t fit for any reason but I seem to do whatever Jen or my sister says : ) The thought … the United States is a country of loopholes. In context it seemed clever; out of context, not so much. Will probably erase this last paragraph early tomorrow morning : )
Last Thursday was a Dana Farber day. Dr Eric walked into the exam room where I was waiting, to ask if it was okay for a new Fellow to examine me. I said yes of course, and then said, Hey, my numbers are GOOD, eh! He said he hadn’t seen them yet. So I showed him on my phone. It is new that patients can see their tumor marker numbers right away – we used to have to wait a week, until after we had definitely had time to talk with our doc about them. Dr Eric looked at my phone, smiled, and said, you definitely are an interesting case! (Remember, these meds weren’t expected to be terribly helpful, and now I’ve been on them for four months.)
Other than that not much to report. I’m still way tired all the time, but that’s okay – we’re in the middle of a pandemic anyway. : )
If life was magical, my address would be 221 Baker Street, and the best Sherlock ever (Benedict Cumberbatch) would be my tenant! Alas, that hasn’t happened yet. Second choice would be to find tenants who pay rent each month but never actually move in. Alas again. So, in the real world I am indeed a landlord … it’s what I do these days, and it’s not bad. My dear friend of forty years, Amechi, lives upstairs on the third floor, and downstairs in the first floor apartment, there are currently two young men who are in medical school. All good!
A few days ago I was sitting at my computer and noticed a strange noise. It sounded like either an alarm or an electronic mosquito … it was very annoying and it didn’t stop. After a few minutes I decided an alarm was more likely than a mosquito and went looking. Front stairs? … hmm, nope. Back stairs … nope, still no louder. Puzzled, I texted Amechi, can you hear the noise? Immediate response … Yes! He came downstairs to help sleuth, but neither of us could find the source. I walked outside — maybe it was someones car alarm? Nope, the noise was softer outdoors. It has to be coming from inside the house. I went to the basement and the sound was definitely louder, but still not locatable, so to me it was obvious — the sound must be coming from the first floor apartment! Unfortunately both of my medical students were away!
I texted them … waited a few minutes … no reply. This was urgent … time to make a phone call. I called medical student “B” who picked up right away. I apologized for calling, and he said, no problem, he and his girlfriend were just hanging out at her apartment in New York. Luckily, “B” could hear the noise over the phone! I asked if it could be coming from their apartment? “B” said that possibly med student “D” had left his pager in his room, and it was going off? I had permission to go looking! I entered “D”’s room, but “B” who was still listening over the phone, said, nope, that’s not the sound of a pager. Phooey!
Now, everyone who knows me knows that my hearing is terrible, even my tenants, so “B” suggested that I ask Amechi to come downstairs to help, since he can actually hear. Good idea, thanks “B,” I’ll text you as soon as we figure this out! Amechi came down to the first floor with his very good ears.
Two weeks ago I emailed Dr Eric to ask if I could reduce my meds from 4 to 3 pills a day because I was miserable. He said, sure try it for a week. I felt less awful on the lower dose, so I stayed with 3. At yesterday’s appointment I was not expecting much — these new meds were not likely to do much, after all; Dr Eric just thought they were worth a try. MUCH to everyone’s surprise my numbers were quite improved. Dr Eric was grinning, sort of pleased with himself for thinking of this medication … it’s not used much anymore, sort of old fashioned. I was grinning too … I am THRILLED you thought of this old med!
Since my numbers were good, I’m staying on the 3 pills a day, and the side effects have softened a bit. Yes, I’m still irritable and depressed, but we have pharmaceuticals for that! (Thank you prozac – as of today I have not killed anyone.) My feet are swollen every night, but, it’s long pants season! I’ve gained 7 pounds, but Jen said I was too skinny before anyway : )
I do sometimes feel like a test tube. This month we’ll throw this in and see what happens! A grateful test tube who has very smart people taking care of her.
Post Script: My sister asked me if I could go back on any of the drugs that had been used on me over the last ten years. I explained that with metastatic breast cancer, ya throw one medicine at it and it works for a while, but then the cancer figures out a work-around so the drug stops working. Kristen said, well has anyone tried it? Maybe the cancer gets confused, or gets forgetful about which drugs worked! I have promised to ask!
FIRST UPDATE, of course, HAIR! A friend stopped by for a quick out door hello, and said my hair looked good. I took a selfie. Clearly he was describing volume not style.
SECOND UPDATE, the cats. Cleo and Merlin are fine! They continue to mimic each other constantly, and most likely are UNAWARE of this behavior. (They don’t even really like each other. ) They entertain and keep me busy every day, mostly with cat clean up.
THIRD UPDATE, Dana Farber.
Forgot to mention I had a visit two weeks ago … was so caught up writing about Plymouths and Gremlins. The DF visit was unremarkable. Tumor markers were both up slightly (BOO). Liver function number were both down slightly (YAY). Aside from that, I’ve been feeling … well … crappy. Since August I’ve gone off of three meds and started two new meds. That’s a lot of chemistry for one body because these are not just vitamins and minerals. One of the meds I stopped taking can can dizziness when it is stopped. Another that I started can cause dizziness when taken. … I have been dizzy for way too long — vertigo, awful dizzy. And my mood has not been great. Looked up side effects of one of the new drugs, and: mood changes, irritability.
No picture for this the THIRD update, but if you look closely at the first pic you can definitely see some deep frown lines.
Continuing on about cars, because, this is strangely fun.
When I was 14 my family moved from the suburbs to the big city — Providence — and it was time for another new car. This time, a Gremlin. Dad had had a Rambler in the 50’s which he loved, and since Ramblers were no longer available he decided to buy a car from the same company, AMC. The Gremlin has often been referred to as one of the ugliest, dorkiest, and weirdest cars in history. Also, one of the worst. In Automobile Magazine, Aaron Gold wrote this: “It was named for the mythical creatures said to be responsible for crashing airplanes and breaking machinery. It was introduced to the public on April Fool’s Day. And as for the styling, AMC design chief Dick Teague made his first sketch of the car on the back of an … airline barf bag.”
OUR Gremlin, was a lovely silver blue color. It was a two-door and had a back, hatch window. It was great on gas mileage. And the gas cap, centered on the back of the car, was emblazoned with an ADORABLE gremlin critter.
The car also had a new safety feature … the driver’s seat belt had to be fastened before the car could be started. And, there was a weight sensor in the front passenger seat, so if anyone was seated there, their belt also had to be clicked before the ignition would work. Unfortunately both seat belt sensors did not work for very long. We drivers would have to lift our bum up off the seat and hover while turning the car key. NO PROBLEM, we all got used to doing this! The only embarrassing part was when giving someone a ride … if they managed to pop themselves into the passenger seat before you could start the engine, you had to say, Hey would you mind lifting your butt up off the seat so I can start the car? Thanks so much.
The rear view mirror was another early casualty. It was glued onto the windshield, but AMC must’ve used Elmer’s. The mirror fell off the first time the sun shone on it. NO PROBLEM! … Dad installed a box of tissues on the dash, which was the perfect height! … the mirror was propped on top of the Kleenex, and each of us could easily adjust the angle.
The window cranks didn’t last long either. But hey, who needs air? (Yeah no, air conditioning was NOT a feature of OUR Gremlin.) Rather quickly we all came to view the Gremlin as, well, an evil gremlin. The ONLY thing lovable was the adorable gas cap! … which was stolen by the end of year one.
When I was 20, driving the Gremlin on Thayer Street, I saw a friend who was walking, and offered him a ride! (Thought to myself, thank god the car is already started so I don’t have to explain the lift-your-butt-up stuff.) He opened the door, thanked me for the ride, popped in, and CRASH. The back of the seat SNAPPED off — completely! He was lying flat, legs in the front seat, head in the back. I was mortified — he was apologetic. I’m SOOO sorry I broke your car. Yeah, REALLY not your fault.
The seat back was CLEARLY never going to be repaired.
During my last two years of college I borrowed the Gremlin weekly to do errands. Dad would drive the car to wherever I was, then I’d drive him to his office, which was the part he LOVED. He sat in the back seat (the only available option), put his feet on the front seat like it was an ottoman, and smiled. He thought it was terrific fun, me chauffeuring him in the Gremlin, with his feet up! He mentioned more than once, Well there’s no reason I can think of to put the seat back back.
I have a dear friend who’s a writer. An actual published writer. Many years ago in one of his books he recalled how in his youth his father drove a Jaguar, and how embarrassed he was by the ostentatiousness. When I read that, I thought, Oh come on … give me a break. I would’ve killed just for a new gas cap!
Adorable (aka, collectable) gas cap.
Spotted in a parking lot earlier this year. ALMOST ours.
Tonight – not about health, cancer, or diabetes. Tonight, a car tangent.
When I was in grade school, my family got a new car … a Plymouth station wagon … pale yellow! OMGosh, I loved that car! It had the third row, bench seat, facing backwards! My brother and I thought that was the coolest thing ever invented on planet earth. We called it, the way back, as in, we’re sitting in the way back! And OMGosh, the rear window! — it magically went up and down with the push of a button! … until it didn’t.
My sister started driving when she turned 16, as everyone who turned 16 did. She used the car frequently, with full parental permission. One of the very FIRST times she drove my adored car out the driveway, she scraped an entire side against a stone pillar!!! No, no, no, I thought. My car! It was badly scraped and dented, pale yellow paint gone!
Dad, of course, was very practical and said, I can fix this. I was relieved! He went to Benny’s and bought a can of spray paint with rust inhibitor. The only yellow they had was MUSTARD yellow. Dad then proceeded to “fix” the damage. (“A car is simply something to get you from point A to point B. Doesn’t matter what it looks like. We just don’t want the dent to rust.”)
Don’t know if it was weeks or months later, my sister was again using the now disfigured Plymouth. She backed out of her boyfriend’s driveway and, CRUNCH! Oh my goodness, was that a CAR parked on the other side of the street?
Dad went to Benny’s again. I was skeptical. This time he found a tail-light replacement kit. My adored Plymouth with a mustard yellow, four-foot long dent on one side, now also had a missing left tail-light, previously a sleek rectangle, replaced by two round, red light-up disks. They reminded me of those brake lights the fancy kids got for their bicycles — I had always wanted one of those, but NOT on my Plymouth station wagon! That’s also when the rear window no longer went up or down.
But hey, it’s 2020 now, and we’re all grown ups! Occasionally my sister will mention things from our childhood that she thinks I might resent her for. None of them register. It was JUST TONIGHT, remembering my fondness for that pale yellow car with the way back seat, that I realize, if there’s any true sibling resentment — it stems from the Plymouth!
My phone beeps for texts and calendar reminders. Yes, I know I can turn those off, but then I’d never notice texts and would probably never have friends again. I got a new computer that is in sync with my phone — so now, if I happen to be sitting at the computer with my phone, and a text or reminder comes in — DOUBLE beeping, double volume … makes me jump out of my skin. Hoping I’ll get used to it.
My house alarm beeps whenever a door is opened — it’s the ‘chime’ feature, which should be called the ‘three beep’ feature. I DO like to know when doors have been opened, so I keep this on.
My refrigerator beeps three times if I leave the door open — this one has proven helpful, once I figure out what’s beeping : )
The microwave beeps five times, really, really loudly, when it finishes — I usually launch myself across the kitchen to try and open the microwave door before the timer ends, because once those five piercing beeps start, there is no silencing them. They are that loud.
The dishwasher beeps when it’s done — I think five times. Unnecessary.
Check my glucose level — beep!!!
And now, my new omnipod (insulin pump) beeps at me. Three beeps as a reminder of something or another, quite often. It sounds EXACTLY like the house alarm chime beeps. Twice I’ve gone running around the house to check which door was opened. Ohhhhh, never mind, just a reminder that I’ll have to change my pod tomorrow.
Back to Thursday because there were a couple items that didn’t make it into the last post.
Jen wasn’t in on Thursday, so instead a young “fellow” named Daniel met with me before Eric. On his white coat, it said MD and PhD, so I asked about his PhD. He said his post graduate work focused specifically on the cell biology and genetics of metastatic breast cancer tumors. Awesome! Really nice to meet you, Daniel! And, could you speed things up a little? we’re cutting it a little close here!
I showed Daniel my new insulin pump! (I’m so, so pleased with it : ) It’s a ‘pod’ stuck to my skin, with three days worth of insulin stored inside. NO TUBES, no tether! I’ve been tethered to an insulin pump for 25 years and this feels spectacular. I described the pod changing process every third day, and Daniel showed an admirable amount of interest, considering diabetes is not his field.
When Eric joined us in the exam room, delivering the news about my growing tumors, we discussed the new medication I’ll be taking, Megestrol. Side effect #1 — Ya might gain a little weight. In fact this drug is used to help people gain weight. When I later told my friend Alison this, she laughed and said, finally! you’ll be a little fat! : ) Side effect #2 — When you eventually go off this med, you will probably have a period. A period, really? Wait, just one I hope? Yes, just one. Oh, okay, one period I can handle, I can get supplies from my daughter. Eric next pointed out that it’s sort of an ‘old’ drug, not used terribly frequently anymore, so my pharmacy may need a few days to get it in stock. Of course, I live in Rhode Island! so before I even left Boston my Walgreens texted to say my Megestrol was ready for pick-up.
Here’s a pod on my leg. Started these July 30th! (That’s Cleo in the background.)
Next DF appointment is Sep 3 … to check how I’m tolerating the new medicine. And how much weight I’ve gained : )
Today, Thursday, has been a so-so day. Or maybe more of a trying day? No, it’s really been a sucky day.
It was a Dana Farber Thursday, for the first time in two months. Early morning blood work with IV, CT scan, MRI. Later, vitals and doctors. I hadn’t been feeling spectacular in June and July, but ya know, that could be attributed to pandemic fatigue, or the weather. Turns out the tumors on my liver are all bigger, so that may have contributed too. What this means, if you’ve been following along, is that I’ll be starting new medications asap … the current meds have stopped working. One bit of good news is that the new meds do not cost as much as a Maserati! Eric, my doctor, said he hasn’t even prescribed this particular medicine in the last five years. We’re trying it simply because it is the last ‘hormonal’ treatment I haven’t already used. And I tend to do well with hormonal treatments. If this doesn’t work, which we’ll know in a few months, then back to iv chemo. And I remember vividly how that worked out two years ago.
Before leaving I had two questions:
If there’s a COVID vaccine will the distribution be organized as I heard someone speculate? First-responders get the first vaccines, then school kids, then high risk individuals — like almost every patient at DF. I asked, will we be on some sort of a list? Contorting his face Eric replied, where do YOU live, the Netherlands?
How long? Eric said he couldn’t possibly know, so I reminded him that two years ago he guessed I had between 2 and 5 years left to live. He smiled and said, okay then, same answer today.
Conclusion … maybe today was more of a so-so day than sucky.
The haircut experience is almost always pleasing. You know, someone washing your hair and massaging your scalp, being raised up and down by a pedal at the base of your super comfy padded chair, gazing at rows of colorful bottles of lovely smelling liquids, and, someone asking for your opinions and desires. Ahhhh.
This week I had a haircut with almost none of those pleasures, but, man oh man, it was the cat’s meow. Rebecca, who’s been cutting my hair for fifteen years, agreed to come to my house. Because I’m terrified of sharing indoor air with any one, I set us up in the backyard! When she arrived we hugged from six feet apart. We wore masks. We traded stories about the last five months of staying at home and generally going berserk.
Being in the backyard, a leaky garden hose was the wash sink, and a lawn chair was my perch (no magic pedal for hoisting me up and down). Rebecca had to pull up another lawn chair behind me to keep her back from breaking. No suds, no potions. But what a fabulous and overdue cropping of the locks.
My hair is no longer making the back of my neck scream in the summer heat. This pandemic has nothing on Rebecca.
By age 28 I was living in NYC and working for IBM, teaching database programming courses. While my eating habits had never sunk back to the depths they were when I was 20, I still struggled. Food was always on my mind, and cravings were nearly constant. Often at work there were breakfast pastries laid out for the students – and those pastries were yummy. They were also terrible for my blood sugar — a fact that was now very clear because of personal blood glucose meters. A quick finger prick, blood on the test strip, into the meter, and oh look, my blood sugar is 300! Oooph. Since I had not been able to fix my ‘moral shortcoming’, fear and shame hovered as I saw every day the numbers on my glucose meter. At the same time I would tell myself that most of my friends struggled with eating and dieting … maybe I was one of the crowd? But my kidneys, my eyes, and my general health were suffering. It seemed I could only control my self-destructive eating for short periods of time. And truthfully, there were moments when I did not really want to let go of the binging … because food tasted absolutely divine when I was in binge mode. If I had a craving and was able to find my favorite corn muffin in a local bodega, it was ten minutes of food bliss.
Then, one evening Joan and I had one of our epic phone conversations about living with diabetes. We were soul mates on the subject (still are). Joan and I had both been taking the same two types of insulin, NPH and Regular, but Joan’s doctor had suggested a switch. She was on Ultralente instead of NPH now, and found that it worked better for her. I wanted to try it, so after an appointment with my doctor, I filled the prescription and started the new insulin.
Within 24 hours of taking the new Ultralente … MY WORLD CHANGED. I stopped being hungry all the time. The cravings were gone. Hours could pass without food entering my mind. It was extraordinary. Extraordinary! I was a new person. I thought about the struggle I had lived with for the previous ten years … now, the struggle was gone. To my surprise, I didn’t even miss the food binge bliss … because instead, I felt control.
The new insulin more closely matched what my body needed, and that was my magic bullet. Still to this day, my insulin needs change from time to time, and when my doses become too low for my needs, the hunger and cravings return. But now I can adjust my insulin, and within hours I become that new person again. It’s important to point out that my experience is not universal. Most people with diabetes do not get insatiable hunger when their insulin doses are slightly off. There is so, so much variation between people’s biology. I once described my scenario to a diabetes doctor … he said he had not heard of my situation before. I think he also might not have believed me, but that’s a whole nuther topic.
I can however think of at least three stories that seem to relate to mine. (1) Remember back in the 80’s when Claus Von Bulow was convicted (and later acquitted) for murdering his wife by giving her an overdose of insulin? The defense claimed that Claus didn’t kill his wife; she overdosed herself using insulin as a dieting aid. So, okay, if she did have a pancreas that was not producing enough insulin, judging by my experience, she could well have benefited by taking tiny amounts of insulin. The amount that killed her? … well that’s probably a different story. (2) An acquaintance, Cathy, started taking an oral medication usually prescribed for Type II diabetes. Cathy didn’t have a Type II diagnosis – the medicine was prescribed for something else. After she had been on it for a few months, she realized she had lost twenty pounds. Cathy described that she had just stopped thinking about food all the time, stopped snacking all the time. Sound familiar? Maybe Cathy had had borderline Type II diabetes, her insulin levels were low, and her snacking was just like mine was. Being on a medication that ramped up her insulin function may have provided the same magic that correcting my insulin had. (3) My mom. As a young person mom was tiny, then after age 30 she was overweight. She loved, LOVED sweets. (She was a closet Ring Ding eater : ) In older age, mom’s doctor would occasionally test her blood and find a high-ish blood sugar. Interestingly, mom was frantic about being hungry. Hunger made her crazy uncomfortable. She kept snacks in her purse, graham crackers on her bedside table … in case she got hungry. If she hadn’t had a snack in the last hour, mom would be anxious. I’m convinced her insulin levels were slightly low … not enough for a doctor to label her with true Type II diabetes, but enough to make her struggle, the way I did.
It is clear that individual biology and chemistry make and control a person. My experience only involves insulin, but there are so many other hormones, enzymes, neurotransmitters, microorganisms, pollutants, etc. — that affect our individual health and personality. We know so little. Obesity is a worldwide epidemic, which cannot be attributed to people’s individual shortcomings. The processed, man-made foods we eat (think, high fructose corn syrup) may be altering the pancreatic/insulin function of whole populations. Pesticides in our food or water might be dulling brain chemistry that regulates hunger. Not for everyone, but for those who are susceptible. We need to learn and understand so much more.
We also need to be more accepting of people who struggle. More accommodating. I have been a ‘thin’ person most of my life, but because of my history of binging, I’ve always felt akin to others who struggle with their weight. I understand the urgent need to eat while at the same time knowing it’s not the right thing to do. It is only because my kidneys were pissing out calories that I didn’t face the same ridicule and discrimination overweight people face.
Some of you, my dear readers, might be thinking … okay, TMI, TMI. Isn’t this blog just a quick tribute to the terminal cancer that will be over soon? I don’t need to know all this! Well, right now there is nothing to report about my cancer (yay)! Next DF appointment is August 6th. Until then I’m hoping that even just one reader will see something here that resonates. : )
It is not completely uncommon for young people diagnosed with “Type I Diabetes” (called “Juvenile Diabetes” in my era) to be able to get away with a lot of ‘cheating’ for the first ten years or so. During this time the pancreas is still producing some little drips of insulin which help the body with blood sugar control. As time goes on though, diabetes gets harder and harder to keep on a leash.
For me, it was in college that my disease got more difficult. Frequent blood sugar highs and lows affected me more, leaving me more tired and frustrated than before. When I was twenty, a junior in college, my classes were acutely demanding – I was trying to get through a bio/med degree while also starting a grueling computer science curriculum. It was an exhausting academic schedule, compounded by the general anxiety of that very insecure age, oh and add to that, the fatigue of a chronic illness which for the first time was making me feel like crap if I didn’t pay attention to it. So, what did I do? Yes, of course, I started seeing a therapist! Did I tell her how I spent my afternoons? No.
Every afternoon I was EATING … eating TOO MUCH … binging … knowing that my blood sugar would sky rocket. Brownies, cookies, cakes, muffins. Pizza, sandwiches, bagels, scones. Potato salad, egg salad, pasta salad, toast. Whatever struck my fancy that day. Everything tasted absolutely WONDERFUL! I knew that I shouldn’t. I knew that my blood sugar levels were terrible (I had the awful symptoms), and I knew that any doctor would say I was risking serious medical complications. But, I, could, not, stop. I also knew that after binging I’d fall asleep from blood sugar exhaustion, because it happened each afternoon. Several hours of deep, toxic sleep. When I woke up, I’d drink some black tea, and get back to work, memorizing neurotransmitters or writing computer code.
This was the era when anorexia and bulimia were for the first time being discussed in public, being written about in magazines. Fellow classmates in college and even celebrities were stricken. I figured I had a diabetes version of bulimia, and told NO ONE. I was ashamed. I felt weak, wasteful, and embarrassed. If only I tried harder tomorrow I could stop the over eating. I just had a moral shortcoming to get past.
Why did no one notice? Didn’t I gain thirty pounds? No. With insulin dependent diabetes like mine, the body can only absorb the calories if there’s enough insulin to process the food, and since I was not on enough insulin for these binges, the extra calories were literally being pissed of out my body, giving my kidneys a major stress test. AND, I KNEW ALL THIS. I knew that my high blood sugars could lead to kidney failure, or blindness, or foot amputations, or heart attack. There’s an endless list of possible outcomes. I knew all of this and remained in painful silence. For years.
TO BE CONTINUED …
(Yeah, I know, I apologize. There is SO much scary, awful stuff going on in the world right now. And I’m writing about personal difficulties which are puny compared to the news from any day this year. And yet, I’m adding to the pile. Soon I’ll write about how this eventually got figured out — there IS a point to this story — just can’t get to it tonight : )