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 : )
So many thoughts … so little time to write. Haha … yeah, right! Here’s a laundry list of things circulating in my brain today:
TANKA Before today I did not know a tanka from a Tonka truck. Now, newly enlightened, I can explain that tanka is a form of Japanese poetry … sort of like haiku with 14 extra syllables. My niece, who is a poet, is hosting an online Tanka fest and asked for contributions. Soooo, here’s my first tanka:
Morning sun shines pink, Bands of rose purple and blue, Through the window pane, Contemplate virus and crowds, Wait for a shining vaccine.
SONS and DAUGHTERS My sister has a bff who has a son working in politics. This son studies and writes about every tweet, every policy debacle, every partisan brawl. Therefore the parents, my sister’s bffs, have to stay tuned in too so they can converse with the son. It’s a lot of work. Oh man! my sister and I agreed, focusing that much on politics today must be exhausting … woo hoo, so glad our daughters do poetry and theater!
TEETH SURVEY! How many of you, my readers, are brushing your teeth in the MORNING every day? Be honest! Recently 3:00 PM seems a very reasonable time by which to have my teeth brushed. Who even notices? This morning, for instance, I met outside with a prospective house painter … I was wearing a mask … he was wearing mask … yes, we had to repeat ourselves frequently … but, it could well be that no one in all of Providence had brushed their teeth at that 10 AM hour … and no one would have ever known : )
GARBAGE DAY MEMES The jokes about dressing up to take out the garbage … they are not jokes.
COVID-19 and ALCOHOLISM? Could one side effect of covid-19 (or, covid-19-induced-ISOLATION) be alcoholism? or will we all magically go back drinking half of what we’re currently belting down?
THERAPY ZOOMS I mentioned to my therapist that I have been drinking twice as much as I used to. She said she wasn’t terribly worried. Apparently ALL zoom therapy sessions now involve patients gaping as they disclose their alcohol intake.
THE HUG DILEMMA When restrictions are lifted, and restaurants are open, and the Home Depot allows more than 7 people in the store at a time, will I still stay home if there’s no vaccine??? I’ll remain highly vulnerable to covid because of cancer and diabetes. But then, what if the cancer on my liver starts spreading again? Am I okay with my days being spent alone, inside? Do I choose cancer over covid as my end? Tough call. Suppose I’ll weigh the risks later. Right now I really, really want to walk into a grocery store, browse the shelves, grab a cereal box, and read ingredients! Who could have guessed that that would be a fantasy? I also want to go to my neighborhood bar, drink a margarita, and eat nachos. Most of all I want to hug my friends and family again … it’s been a while.
HAIR UPDATE My hair is thinning, which I pointed out to my NP, Jen, last time I was at Dana Farber. Look! Look how thin it is here, and here! It must be the meds! Jen remarked that she did not know of any hair thinning caused by my current medications. Ya know, it could just be that you’re older now. Oh, well, umm, okay, I suppose that’s a possibility. So, anyway, after that appointment I started taking nutrients, in the form of gummies, to help the hair situation. I don’t know if the gummies work or not, but they are DELICIOUS first thing in the morning. And my hair? well, it’s not really that bad … I am almost 60 after all.
Hello, hello. Hope everyone is well and sheltering in place!
I’ve been self-isolating since returning from Sydney. That was a MONTH ago! I’m getting a little stir crazy, but it could be a lot worse … needed groceries are delivered regularly … my dear housemate Amechi gets me the groceries I can’t find online (like toilet paper!) … the drive-thru Walgreens provides an exciting outing every week or so … I have two cats to keep me company … and, of course, thank GOD for all the memes!
I’ve been sewing a little too. Made a super cute cat cozy …
But the cats are boycotting it. Maybe I could turn it into a hat.
Made a super cute mask! Which went perfectly with the outfit I wore to Dana Farber on Thursday!
The DF appointment was a month overdue because of (1) my trip to Australia, and (2) COVID-19. This coronavirus is complicating a lot of things. Anyway, my tumor marker and liver numbers were all good! Whew! So I’m thinking, I’ve battled diabetes for almost 50 years, and prevailed. I’ve battled cancer for 15 years, and survived. If I die because I frickin’ touch my face I’m going to be pissed.
OMG, look! Merlin decided the cozy was cozy.
All is well. Thank you Merlin! Cleo, we’ll talk later.
Let’s see if today, Friday, I can write at 10:30 PM EST? Times zones are still a little muddled in my head.
I got back Monday night from Sydney! Australia! Never thought I’d visit down under, but my daughter is studying abroad for a semester, and she had a week break from classes, so, off I went. The travel was strenuous to say the least — I flew cattle class and flights were canceled two different times, so lots of airport shuffling. Nevertheless, I made it! When I arrived at 8:00 in the morning my daughter declared that she would keep me awake all day to help with my adjustment to Sydney time!!! (It actually did help.) We traipsed all over town – Chippendale, Spice Alley, Bondi Beach, Tamarama Beach, and Bronte Beach (walking in between), many metro stations, buses, and trains, and finally Potts Point where we checked in to my AirBnb and went grocery shopping.
AirBnbs are hit or miss – I’ll leave it at that.
By day 5 we moved to a hotel in The Rocks section of Sydney — nice change, and I’ll leave it at that.
Sydney is AWESOME! That one word sums up the trip.
On day 9 it was time to head home. Before I left for Australia there was some attention being given to the ‘novel Coronavirus’, but certainly not the craziness that greeted me when I returned.
Now, back in Providence, it is suggested that anyone who has traveled internationally in the last two weeks should self-quarantine for 14 days. Well, sure, okay. Roger! I can do that! And yesterday I learned about social distancing — six feet is the ‘safe’ distance – 6 feet from anyone who might spread a virus TO you, or, get infected BY you. Roger! Got that too!
I’ve now used the drive thru to pick up Rx at my local pharmacy, and I’ve had 7 bags of groceries delivered to my front steps. Things could be worse, eh? Let’s hope it doesn’t get too much worse. The cancer medications I’m on deplete my white blood cell count to half of normal, and I also have diabetes as a (second) underlying condition. Oy – I’m in the high-risk group! So I’m trying really hard to not catch this bug.
Although, if ya think about it, Coronavirus is killing the aged and infirm. It’s not killing the young and promising amongst us. If we’ve got to have a virus that does some pruning of the human species, maybe this one’s not terrible? Having said that, I WOULD like to stick around for a while longer, even in my old and infirm state. : )
I am a BIG believer in Reduce/Reuse/Recycle. Waste of any kind makes me crazy.
Twice a month now (because my insurance company will only allow me a 14 day supply at a time) outrageously expensive medicine is delivered to me … via FedEx … signature required. The meds arrive in a nearly bullet-proof cardboard box, filled with wads of air-filled padding, surrounding a heavy-duty-zip-lock plastic bag. Inside the plastic bag there is a hard plastic medicine bottle containing my pills, which are each individually wrapped in cardboard and foil pouches. Quite like going thru a set of Russian Babushka dolls to retrieve my pills.
There’s not much I can do about all this packaging — other than reuse and recycle. Since the zip-lock plastic bags are AWESOMELY sturdy, they always get stowed in my kitchen drawer for later use. And while they are impressively sturdy they are also unfortunately branded with what looks like a skull and cross bones …
Now, I’m really used to this stuff by now, so the yellow caution warnings don’t bother me at all. I reuse the bags a lot. They are especially good for freezing things like yummy, homemade cookies.
Last week I stayed with my cousins in Boston and brought some lovely, leftover, coconut cake … in a sturdy (branded) plastic bag.
Last Monday was my first check in at Dana Farber since I started a new medicine routine four weeks earlier. The new drugs are (1) Everolimus (an mTOR inhibitor) which is meant to ‘enhance’ (2) Tamoxifen, the second drug. I’ve taken Tamoxifen before, and in my mind it sooooo did NOT do the job. It was my daily medicine for six years after the first cancer, and it was supposed to keep me from having a recurrence. Oy! Nonetheless, it is again in my morning pill organizer … … … responses to drugs can change, plus paired with an enhancer it is different.
For the Monday appointment I arrived with a written list of my new side effects: high blood sugar levels, mouth sores, red blotches on my face (yes aka acne), change in sense of taste (food that is, not style), depression, no tolerance for alcohol, abdominal discomfort, loss of hearing, and urgency to pee. EACH ONE of these side effects was difficult – combined, they made me feel feeble and geriatric. The last one, the urgency to pee, was particularly distressing. We’ve all seen the TV commercials about urgency to pee and incontinence, but no, no, no, no, no … not me. Really??? This was bad.
But I had to resign myself to this new stage of life. I bought a package of depends.
So on Monday I recited my list of side effects, wearing my inaugural adult diaper under my jeans, and Jen listened. When I got to the end she said, that one doesn’t sound like a side effect, maybe you’ve got a UTI. But I don’t have any pain. Ya don’t always have pain with a UTI, she said, and ordered a urine culture. Two days later, UTI confirmed! Woo hoo! I took the prescribed antibiotics for three days and, voila! No more pee scares! WOO HOO!
Oh! the simple joy of a UTI. And oh! the simple joy of stowing away my adult diapers in a far corner of my closet.
Yesterday was a Dana Farber day … first visit in over two months. MRI, CT scan, blood work, vitals, NP, MD, and CSW. Results were, well, not great and not terrible. Sort of … average.
My whole life has felt very average. I’m average height and weight. Average to good social skills. Average to good wits. Average to below average health (although, maybe a little above average health outcome given the handicaps). My home is average size, in an average size city, I drive an average car, etc etc etc. Average feels comfortable.
Blood work yesterday showed one tumor marker was up slightly, and one was down slightly. Righty! Scans showed that the cancer is growing. (‘Growing’ by the way, is never a good word in oncology.) The tumors are not growing rapidly, but nonetheless growing. Righty! Taken all together, this means it is time to switch to a new medicine; time to try to thwart this cancer with yet another whack-a-mole mallet. As soon as my insurance company okays the new drugs, I will start on a new combo of oral cancer meds. The docs and I also discussed two other options, both involving chemo and hair loss — for different reasons we all settled on this next step.
If you remember from an earlier post, I stopped drinking alcohol for the last two months, just to see if alcohol might be affecting my cancer. While one person (me) abstaining from alcohol for two months does not make a scientific study, it was an experiment I was interested in. So tonight I had a double scotch … and took a mental inventory of the FANTASTICALLY ABOVE AVERAGE friendships and joy I have in my life.