Thoughts

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   : )  

ONWARD!

Ya might have to forgive me for this, but I’m venturing again into the arena of tanka.  I like the simplicity, so here is my second one:

Feast, gorge, devour, more … devine sweet … but in my blood, parched, despair,
advice, new meds, cravings lift, life shift,
Gorgeous science feast for all.

 

More explanation later.  < – – – – that’s NOT part of the tanka : )

 

 

 

Words are just not springing onto the page today, so hopefully updates on the cats and my hair will suffice. 

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. 

Note: If you’re interested in seeing more, the tanka contributions will be shared on the Hollywood LA Public Library instagram    https://www.instagram.com/hollywoodlapl/?hl=en
Go for it!

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.    

It has occurred to me that:  (1) until there’s a vaccine, I’ll probably be hangin’ at home.  (2) a vaccine may well be 18 months away.  (3)  thank god for cats!

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.   : )

Onward!

 

 

 

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.

Hope they ate it!          : )

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.  

Cheers and onward!          

Good evening. 

Tonight it felt like SOMETHING should be tacked on to this blog, but, not being in a writing mood, I decided a good ol’ hair update would be fine. Since my scalp has now produced a very workable amount of hair, I’m spending time in the bathroom gratefully fussing with it.  The routine … 

1. Half hour before shower, apply hair ‘mask’ and work the viscous, lovely smelling cream through hair with fingers. 
2. Wait. (While waiting, a good portion of the thirty minutes will be spent washing the ‘mask’ off hands.)
3. Step in shower and wash hair.  Because of the ‘mask’ it will take two or three washings.  Follow with conditioner which soaks in for an additional five minutes … useful time which can be spent not on hair. 
4. Step out of shower.  Spray on ‘leave-in’ conditioner.  Gently comb through. 
5. Next, blow dry while pulling outwards with round brush (Pic 1).  Try not to pull too many hairs from their follicles during this step … tricky.

   

6. Time for the formidable flat iron.  Find it in the cabinet along with the burn protection glove that came with it .  This thing is scary hot … do NOT clip your earlobe with it and do NOT get distracted nor dawdle.  Yes, flat irons are scary, but they are, well, necessary since approx 2010 America.  (Pic 2)

   

7. Last but not least, the POMADE goes in … crack for (my) hair.

   

Pic 3 shows resulting hair after all these many steps.  Oh, and just a teeny touch of makeup (barely worth mentioning) on the adjoining face.  

Good night now.  

On Saturday I went to an all-day, informational event focused on metastatic breast cancer. There were researchers presenting the latest findings, nutritionists talking about food, therapists discussing coping, … all sorts of fun stuff!   It was the third time I’ve attended this annual event.  I’ve been living with MBC for 9 years now which is longer than many last, a point which became poignantly apparent. One fellow patient I chatted with said she was so encouraged to hear that I had survived so long … she was a newbie.  

A month before my MBC diagnosis, my daughter was eleven, and she and I went on a trip to England. I rented a car to drive from London to Wales … the rental, of course, was a stick shift. I know how to drive a standard, but hadn’t in years, and I’d never driven one where the stick is in your LEFT hand. Never mind driving on the left and all. When we first set off, we went down a narrow street which ended on a very busy road. The British GPS voice said pleasantly, TURN RIGHT … making a right turn in England is of course like making a left turn here. I was looking at crossing two lanes of heavy traffic into another two lanes, while watching for buses in the bus lane, pedestrians on the sidewalks, and bicycles everywhere. I sat for a moment and said out loud, I can’t do this. A little voice from the backseat chirped up, YES YOU CAN, that’s what you always tell ME when I say I can’t do my math homework.
Obviously I had no choice … six hours later we arrived in Llandudno.

For nine years I’ve doggedly remained positive … not because positivity extends life (it doesn’t) but because it makes life better. Of course, there are days when my mind thinks, ya know, I don’t have a lot of years left. Then my head says to my mind, yeah but we’re still talking in years, not weeks. My mind responds, maybe, but I’m not going to beat this disease, no one does. (Sometimes) my head replies, YES YOU CAN.

New plan: no more alcohol.
I’m gonna test this plan until my next DF visit in November.    

Since on Monday my tumor markers were up, even though only slightly up, it probably indicates my treatment is losing effectiveness … that’s been the rule in the past, once the trend changes from down to up, it’s not going back. Which means I will need to change meds again.  Which s*#%*cks, because my body has been tolerating these meds really well and so far they’ve been doing their job. 

I exercise religiously, eat healthfully, meditate daily, and have a fantastic support system. I figured the ONE place I could ‘cheat’ was drinking. Research shows that alcohol is not great for cancer, but since I’m not a heavy drinker, and because I love a good cocktail, I’ve been ignoring that particular data.

Tuesday, I called Aaron … come over for a last evening of drinking?
I had a REALLY good bottle of champagne in the fridge and was NOT going to miss out on it! … It was D E L I C I O U S !  (thank you Pam : )
When Aaron was leaving, he said … well, looking forward to November when you can drink again!

Well … wait. If in November my numbers are steady I’ll attribute the good news to The Plan. The Plan could help slow the cancer! That’s the hope. On the other hand, if the numbers aren’t good … well, then, I’m going home and having seven cocktails! In the bathtub!

It’s an excellent Plan … I win whatever happens.  

Today’s visit was neither terrible nor great. Numbers are heading up – not speedily, but yes up, slowly. So there’s nothing to change treatment-wise right now. It’s not an urgent situation.  We’re waiting for two months — yay, two months without a trip to DF!  In November I’ll have a CT scan and MRI.  Blood numbers too, of course.  We’ll see what it all looks like then and rethink. 

I’m feeling okay about today. I had been expecting worse. Because of all the fun this summer it just felt like some shoe should be dropping! Well, not actually because of having a fun summer, but because it’s time for something to change.  It’s the way cancer works.  I’ve been on my current meds for over a year.  I take really good care of myself to stay healthy as long as possible, but without a new miracle medicine or some divine intervention, my future is set. Flexible to a degree, but set.  I’ve gotten used to it. I’m not all that different from everyone else on the planet …  we ALL know we’re not getting out of here alive!  (thank you Henry!)

When I was young I thought being hit by a bus was absolutely the best way to ‘go.’ No warning whatsoever. Now after living most of my life with chronic illnesses, I’ve changed my mind. Having time to know and to plan is fantastic. Like this summer!  I checked so many things off my bucket list this summer!!!  Ha!  … Wait a second! Whoa, whoa. QUICK – it’s time to add more items to my bucket list. Open-ended items, lots of projects!  Otherwise, if the list is all checked off, wouldn’t that mean it’s time to go?!!   

Not now though. Hell no.  My friend Alison’s kitchen project still needs me!  

 

 

After the road trip, a week of rest was in order. (Not just for me, for my daughter too, which made me feel better : ) Then, onto the next project … CakeAllDay Day.

My birthday is August 20^th… which this year was a Tuesday, and I decided to serve cake, all day. I sent emails before the road trip, inviting friends to stop by for cake any time between 10Am and 8PM. Such a fun idea? Yep. It was a totally fun day! Five different, decadent cakes: Flourless-Chocolate-cake-w-raspberry-sauce, coconut- layer-cake, carrot-cake-to-die-for, homemade-secret-recipe-cheesecake (thank you Carey), and yellow-layer-cake-w-chocolate-icing-and-mousse.

My high school bestie, now a Californian, was the first to arrive … surprise! Omgosh! Cousins from Boston came! Cousins from Connecticut, my sister from NY, and my nephew from Raleigh were all there! My college pal from Westchester, friends from the Cape, my awesome friends from RI! The day was long and fun and SWEET! And also exhausting. By post party cleanup time my sister, nephew, daughter, Cali friend, and I all sat around the kitchen stuffed and groaning.  We each proclaimed that we would NOT be able to eat cake for a year.

The next morning we each snuck into the fridge for leftovers. Carrot cake seems VERY close to a bagel and cream cheese for breakfast, right?!

 

So, August 2019 … first the road trip … then CakeAllDay Day. The month felt like more good stuff than is possible. Then on August 31^st Karen (my late brother’s best-friend-forever-girl-friend, my sister-sorta) arrived for our CAMEL WEEKEND. Labor Day at the zoo!  We had a pre-planned camel ‘encounter’ — a private meeting with the camel Sasha, the camel keeper Kim, and a bucket of carrots which we fed to the amazing dromedary. This may sound like something for kids, but nah, this stuff is wasted on kids. We had a BLAST. We spent the whole Labor Day weekend eating, shopping, zoo-going, eating more, and shopping more. Ha!

Sometimes I think I’ve had more happiness than anyone deserves. Funny.

Tomorrow, Monday, is DF again. Wish I could claim no fear … perhaps, if I were a camel

: )

 

Onward!