So many Thursdays

 

FIVE Thursdays ago were my scans with the not-so-great news.  


FOUR Thursdays ago was my biopsy. (The procedure was a breeze – oh, except for the fact that they did not give me enough anesthesia … but after I screamed OOOOWWWE I think they upped it).  


THREE Thursdays ago I met with NP Jen and Dr Eric who reported that the biopsy showed my cancer has remained very strongly estrogen-receptor-positive (meaning it eats estrogen to grow).  That’s why 11 years ago my ovaries were whisked out of me.  Followed by years of treatments to squash any remaining  specks of estrogen produced in my body.  It’s all been sort of successful — I’ve survived a pretty long time doing everything that was recommended.  So guess what the recommendation three weeks ago was?!!  Give me ESTROGEN as a medication.  What the #$*%? 

The explanation?  Well, it seems that if we “perturb” the hormonal environment of the cancer, it confuses the cancer for a while and can help.  So we are currently perturbing/confusing the cancer with its favorite candy.


My personal tactic is to confuse it with tequila. Seems just as valid.

I have prodded Dr Eric with ‘the question’ and he estimates that I have between 6 and 12 months to live. 

The weeks since my last post have been busy! Filled with visits! Friends’ visits. This is great fun of course, because I have awesome, brilliant friends (each of whom seems to be worried about getting to Providence before I kick the bucket : )  We have all been laughing out loud a lot.  THAT will confuse the heck out of the cancer.

NEXT Thursday back to DF for the usual … blood work and chatting.

Radiologists

A few years ago I read something that has stuck with me. Radiologists were discussing their jobs and how they never actually met patients. They just looked at scans of patients which made them quite removed from the actual situation … they could say things to each other like, whoa look at this tumor … someone should tell this guy not to buy the extra large tube of toothpaste next time.  I chuckled … oh those doctors.

Last Thursday was another Dana Farber day for me. Started with a blood draw, then an MRI, followed by a CT scan, then to the doctors, with chemo scheduled for the end of the day. Whew. But by the time I met with my NP Jen I had already been able to read the reports from the morning bloodwork and the scans. The MRI scan provided the worst news. The cancer is growing. Unmistakably.

Chemo for the afternoon was cancelled (… it’s simply not helping). When I spoke with Dr. Eric about choices moving forward, he offered up another type of chemo and also suggested for the first time that no more treatments was an option. I nixed the chemo idea, and we decided to schedule a biopsy (of the cancer that is on the liver). It is very unlikely that it will yield clinically useful information, but what the heck, I’m not doing anything else next week.

Two things:
(1) I DO hope that the radiologists looking at my scans had a giggle about toothpaste.
And (2) I really wish I had remembered to take a selfie that day — it was a really good hair day!

Will keep you posted. Onward!

May the 4th (be with you)

Apologies for such a long gap since last post. 
A few random thoughts and photos …

VACCINE:
I got my second Covid vaccine back in March.  Only spent one day in bed with side effects … exhaustion and nausea – because of course, if nausea is listed as a possible side effect my body says, oo oo over here, I’ll take that one, I’ll take the nausea!

CHEMO:
Last week was my 4th Doxil chemo treatment. Here’s how it goes in pictures (lots of waiting involved):

blood draw waiting area – 2nd floor
waiting area for vitals – 9th floor
exam room – waiting for docs
waiting for chemo – 9th floor
chemo!

Today is May 4th and the nausea is not terrible.   
So maybe the force is with me!?!

BACKYARD:
Lilac trees in the backyard are gorgeous this week!

VISIT:
Since we are both vaccinated now, my sister came for a visit last week.  It was super fun but it felt like there was some strange force surrounding us.  First I managed to gash my shin while we were simply putting sheets on Kristen’s bed.  Later my phone went flying into the cat food dish.  Then my dinner fork went flying into my water glass.  The kitchen pillow flipped  into the cat food bowls (again!), and my phone went flying across the kitchen floor at least twice.  It all looked like a slap stick routine.  Chalking it up to being alone and isolated for so long — not used to more than one person’s energy in the apartment.   

 

ONWARD!

Quick Updates

  1. Covid vaccine
    This Tuesday I’m scheduled for my SECOND vaccine shot.  The three weeks between shots — have felt like three years.
         
  2. Chemo/Nausea
    Monday was AWESOME … no nausea!  Such relief! 
    Unfortunately on Tuesday I woke up queasy.  Mild though, maybe a 3 out of 10 on the nausea scale..  The queasiness stuck around, off and on, the whole day and evening.  Wed, Thu, Fri too : ( 
    Not terrible nausea … nothing like the ten days last month.  I can live with this, I keep reassuring myself : )  

  3.  Car shopping
    Tuesday I remembered that I DO need a car, that works.  So, queasily I went shopping.  It was EXHAUSTING, but I succeeded … I bought a car.  Wednesday morning when I picked it up, it struck me that it was actually sort of fun to have a new, working car.    
    new little car

     

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!