So much time, so little to do

We’ve all been waiting, waiting, waiting. Waiting FOREVER for the damn pandemic to be over. Last year at this time I thought, okay, I can do this isolation thing.  It’ll be fine. I can have groceries delivered. I can shop online. No problem.  Thank goodness for the internet, I can do this. Thank goodness for Zoom. 
But then, it kept going on. And on. And on. So much time, so little to do.
Occasional, inaudible screams have been fluttering from my brain.


On February 23 I got my first Covid vaccine. I had no idea that I’d actually be giddy — seeing the needle go into my arm was like a first sighting of light at the end of the tunnel. I wanted to dance down the corridors singing Hallelujah! (I resisted.) Now, there’s a bit more waiting – the time between first and second vaccine shots, and then two weeks before immunity fully kicks in. This waiting time includes something new though, a smile on my face as I make a mental list of all the things I will do. (IKEA, CVS, WFs, … all the trips that used to feel irksome will now be filled with joy, FOREVER.) The thought of picking a box from a store shelf, feeling its weight, reading the ingredients, and MAYBE, just maybe, putting it back makes me shiver with delight.

Three weeks ago I mentioned that my first chemo treatment (with Doxil) ended up being rather tough. Ten days of nausea and vomiting. BRUTAL. I am hoping that the sickness was not caused by the chemo but rather by my withdrawal from my previous meds — which could be true. I’ll know in a few days. I just had my second round of Doxil chemo on Thursday. Most chemo related nausea happens within a day or two, however last month it happened on day 4 for me. Again hoping for the other explanation — not sure I can go through 10 days of nausea and vomiting each month. Cross y’alls fingers, please. Monday will tell.

Now I have to go buy a new car. SCREAM! I don’t want a new car. My current, broken car should’ve lasted for the rest of my life, but I keep on living longer than expected.  It  gave up. So irritating. Gives me zero pleasure to buy a new car — I don’t even like cars.  And the current car broke down on Thursday, my chemo day, of all the nerve.  THAT added a bit of stress to a day that did NOT need extra. I do need to have a car to drive to my second vaccine appointment. What should I name the new car?  COVID?  Chemo?  Any other suggestions? 

 

Scottie

Beam me up Scottie!  This was not on the excursion plan.  Day seven now of nausea/vomiting.  NOT on the plan!  
Beam me up … and have Dr. McCoy standing by.

Kool-aid

As forecast, I started a new treatment regime on Thursday.  The chemo is called Doxil (doxorubicin).  This is the treatment that was advertised to me, by my doctors, as easy peasy.  Truth is, yes  … compared to the last chemo I was on.  Since my first session was scheduled last minute the layout of the day was not great … start, with an echo-cardiogram at 1100, and end the day with chemo at 3:30, which we all knew wouldn’t happen until 4:30 or 5:00.   LONG DAY.  So, I planned accordingly and booked a hotel room a block away from Dana Farber.  (I really, really don’t like driving in the dark , and right after my first chemo?  no thank you!)

The echo was fine.  Then blood work, fine.  Then doctors.  Then chemo …  yep the pharmacy was backed up so my treatment started at 500, not 300.  Nobody’s fault.  The actual chemo  liquid going into my vein was a bright orange-red, or, Kool-aid colored as Patricia, my nurse, said!   

Kool-aid colored chemo

 

And I had a corner office, so the view was grand …

chemo view from DF

 

Chemo went just fine.  No immediate bad reactions (which can occasionally happen).

I got to the hotel room at 6:30 — relieved not to be driving home.  I am a worrier however, so rather than worrying about a traffic accident, I spent the entire night worrying about catching COVID from ‘something’ in the room. 

Friday morning before driving home, I got a bonus quick visit with my daughter!  Yay.  Yesterday and today …  eh, a little mild nausea (nothing a bowl of dry cheerios can’t fix) and eh, a little bit of exhaustion (nothing two 2-hour naps a day can’t fix).  So, I’m doing just fine.  Easy peasy as advertised.  

I am eternally grateful for the care I have received over the last decade, and my entire privileged life.

ONWARD!

Onto new meds

THURSDAY · JAN 28 · 2021 
800am — 1/2 mile east of DF – MRI of abdomen. 
930am — 1/2 mile south of DF – CT scan of chest. 
1030am — DF 2nd floor – blood draw. 
1200pm — DF 9th floor – vitals.
1230pm — (actually, more like 230pm) — DF – Jen and Dr Eric. 
The best part was that my fit bit logged all this racing around and counted it as a full day of exercise!  I got a bonus day-off.        

Scans showed that, yep, my recent pain was that pesky cancer again.  I had been hoping for a cracked rib.  Have you ever had sneeze pain, like from a fractured rib?  You sneeze and think, oh, just-kill-me-now.  I had that pain ten years ago, when the cancer first appeared on my sternum, but when I started treatment the pain magically went away.  Recently however, the cancer on my sternum has grown something like a billionth of a millimeter — and this minute adjustment makes me beg for mercy if I feel a sneeze coming.   

So, the good news is that I get to stop my current meds. 
Other news, next Thursday I start a new course of chemo.  This particular chemo has been described to me as about as burdensome as drinking a glass of water.   Will let you know!

Onward!


 

Coulda been crappier

A lot of people are feeling crappy these days.  I know I’ve got company in this.  But recently I’ve had MANY crappy days.   There are layers and layers and layers of, well, crap, contributing to this malaise.  The pandemic, politics, economics, the climate, hate  — those are some external contributors.  My personal internal factors you’re mostly aware of.  For instance, I mentioned that my recent trip to DF revealed an increased tumor marker, meaning I’ll need to switch meds soon.  Switching meds is never fun because it often involves my blood sugars so I have to balance both diseases simultaneously.  Some days, I just want to scream at all the crap.  

A couple months ago while feeling crappy, I bought AirPod Pro’s.  To be clear, “retail therapy” is not a solution I tend towards, but I do exercise at home, in the living room, listening to music; and I thought, since I am such a good doobie about exercise, I will treat myself.  Indeed, the little white ear sticks do make the music sound better.  A lot better.  So that turned out to be a good purchase.  I love those things every time I exercise.  

Today was a crappy day … I’ve upped my cancer meds which make my mood go down and my blood sugar go up.  Taking a walk was the only thing that I could think to do — it should help the mood and the sugars.  I put the AirPods in my ears and left the house.  Forgot to turn on music which was the whole point of the pods, but I walked and walked an walked.   Totaled about two and a half miles.  When I returned home feeling a tiny bit virtuous, I glanced in the mirror and the left pod was missing!   NO.   NO.    NOOOOOOOO!!! 

After checking my clothing for the pod, and my driveway and steps, I felt completely defeated.   I considered retracing my walk, but it had been long and winding.  There was no way to remember which side of the street I was walking on when.  Nevertheless,  I put on glasses and decided to retrace the first half mile.  Do you have any idea how many one inch pieces of white are on sidewalks???  Lot of bird crap, for beginners, plus pieces of Styrofoam, wrappers, and labels.  Soooo frustrating.  I started to wonder, can I buy just a left airpod?  So, so very frustrating, and then, I see it!  MY LEFT POD, on someone’s lawn. 
No way?!?  

Yes way! 

 

Footnote:  Since “pods” have been a topic for me before, just want to point out that AirPods have nothing to do with w insulin pods : )  
or podcasts. 
or podiatrists.

it’s a miracle!

 

Jan 5, 2021 — DF

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.

Merlin glam

 

 

Nov 2020 update

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.  : )

 

Cleo 2020 glamour shot

Sherlock, I am not.

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.

Shortly after, this was the text conversation:

 

test tube update

Yesterday was a Dana Farber day.

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.

… Onward

 

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!

A few quick updates

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.  

Sept 2020 hair

 

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.

Sept 2020 Cleo and Merlin

 

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.    

Tangent – the Gremlin

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.

Tangent – the Plymouth

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!

To be continued  … the Gremlin. 

so many beeps

There are so many beeps in my life:

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.

All good. Onward!