Monday Morning 3 AM

I know thats a song but I am too lazy to look it up. ( ok its Wed morning 3 AM. Simon & Garfunkle. I was THIS CLOSE!! 

Anyway, nothing good ever happens at 3 AM.  I really hadn't slept much but I woke up hungry so went to the kitchen and had one of these tiny delicious little Trader Joe’s pumpkin cakes. It is hard to stop at just one. 

Then I went into the bathroom to look at myself. 

First I should tell you that I spent about an hour trying to place an order on the hat site where Nat got me my beanie cap.  I figured I would get two because shipping is $6 regardless.  I wanted one in purple. I thought i would try a different one that was lined and came in plum, but the other one, like the “sleep cap” i have been wearing, comes in Amethyst.  I didnt want two purple caps tho and couldn’t decide. So i thought ok i will get one in the teal green.  So i tried placing my order but it wouldn't go thru.  Can't reach the CAPTCHA server or something. Ok well it was 2 AM. I will try again later. It's only taken me about 3 days to reach the point of actually ordering the damn things. 

So, anyway, in the bathroom I take off my beanie.  I still have some hair on top but its not quite as pixie-ish as it was earlier.  I look more like one of our younger residents who wears wigs and often takes them off.  

And my skin looks horrible… the sunburns of my youth have come home to roost.  My skin is like a weather report— “dry and patchy with sun spots”.  Yes I am 62 and i don’t have a lot of wrinkles - clean living? ( no smoking) and always using moisturizer has helped, but now we all use Retinol, which is mostly for wrinkles. I need to figure out what to put on this face for the dry spotty parts.  I suppose chemo doesnt do any part of my body any favors, altho Taxol is derived from plants, but i think i will treat myself to a Sephora visit tomorrow and throw some money on something that won't work anyway. 

Hey Little Yew Tree. Thank Yew!

I googled the drug i am getting - Taxol.   It is an interesting story, especially since it involves a grant given to Dr Susan Horwitz of the Albert Einstein School of Medicine at Yeshiva University. And the clinical trials were being done while I was still a college student.  I know it was forty years ago but that still seems not that long ago. Crazy. 

https://dtp.cancer.gov/timeline/flash/success_stories/s2_taxol.htm

Giving myself a Pass 9/25

Something I found on line.  Right now I am just trying to keep the “will I be cured? ” voices in my head down to a very dull roar so I can try to not have to remind myself of these things.   # 7 is hard when you aren’t going out that often.   

here’s hope for a good week 9/22/21

So I got a new chemo drug this week and so far none of the annoying side effects i had last time but it has only been a couple of days so that could change.  I have had a lot of energy but today i have just been kind of lounging.  I was switched to Taxol and while it seems like some of the side effects are the same, the lists are long and it’s a crapshoot who will experience which ones anyway.  If people got seriously spooked about side effects I don’t think anyone would ever take anything.  You have all heard the drug ads on TV so you all know what i am talking about.   Oh and by the way, this drug is made from the bark of the Yew tree and was in clinical trials back in the late 70’-early 80’s.   That is seriously mind boggling to me. 

Yesterday we went to an optical shop to look for glasses but only Alan could get them because I cannot find my prescription anywhere in his house. I searched through piles of paper, folders, boxes, drawers, bags- no idea where it is. Plus looking for new glasses is hard enough when not wearing a mask and a head scarf.  But once i get another copy i will be able to find something. The selection there at Optica in Natick Center is pretty good and not outrageously $. Which is good because i am sure my lenses will be $.  

Last night Dina and Brad from TBI came by to bring us homemade tomato sauce and veggies from their garden.  I should just pay people to cook for me, healthy or not!  My Waltham community is really great. 

Monday lots of changes

Today I got to chemo at 8:30 but I had to talk to a bunch of different people, have blood taken and discuss my side effects from last time with the nurse. 

Which all led to - ta da!! Change of drug protocol!!!

Because of my mouth sores and bathroom issues as I described, the Oncologist decided to switch my drugs from Taxitare ( Docetaxol) to Pacitaxol ( Taxol) .  

 BUT- 

I have to have that one EVERY WEEK.   

It will be a smaller dose, so an hour plus blood work, other meds etc.  So 9 more weeks.   Every week the Taxol then every 3 weeks i will get the Immunotherapy drug but they took me off the second one, Herceptin.  

I am not sure why but Dr said the benefit was small.  So I am no longer in the trial either.  🤷‍♀️

Today was busy- various nurses coming to see me, check on me, switch my infusions, etc.  I mostly texted with people and played solitaire and Alan read the Sunday Globe and did an errand.  I got there at 8:30 but didnt even start any infusion until after noon.  Got out at 3 pm. 

I feel good but i think they still want me to stay away from people. 

Hair today, none tomorrow

2 AM realization.  There is hardly any hair on my face. I still have my eyebrows but my face is smooth and almost hairless now.  So are my fingers. This is the best perk yet. But the weird thing is that my scalp hurts. I guess that as it is coming out the follicles are overly sensitive.  A friend suggested an ice pack, and that actually helped. I love the cap my sister got me.  I posted photos of myself in my cap ( and without!) and everyone says how great i look.  ( seriously???).  But to be honest, I can almost see leaving my hair this short when it grows back. I kind of like it MUCH more than I ever thought I would.  No wig for me thanks, altho it is tempting to make an appointment and try some on.  

The cap comes from www.headcovers.com and they have lots of different styles.  

Hi Ho Hi Ho

 I got through the High Holy Days without too much difficulty but it was very frustrating at times.  I honestly put off preparing until the last minute, not really knowing how I’d feel. But doing Rosh Hashana online was great, actually. Very easy setup. I just used my phone and my new $30 headset.   Someone set up a TV monitor so people could see me   

I decided i would go into AAEI to do the  Nidre service. I asked my friends if anyone would like to watch me via zoom and i was quite surprised by how many people wanted to, including my cousins in Vegas and my cousin Nancy in FL, and a number of my Malden peeps too. They even “tuned in” on Thursday for my Musaf service and for Yizkor, which I led at noon.  There were about 25 people on zoom. I also watched a friend daven Shacharit online in CT which was a nice change.  

My only real complaint for both in person KN and zoom thursday was that there were just too many people on the Bima, each trying to coordinate who did what.  MS drove me crazy by constantly muting and unmuting me, and telling me when to start, and jumping over me on things.  I don't know but this year i really felt like I should have been more in control but it wasn’t happening.   At one point I just turned off my video and put my head down. I was really pissed.    

Texting with LA later I said you know, I think i am done- I’m hanging up the robe ( which I didnt even wear this year).  It finally occured to me that honestly, they don’t deserve me.  I have finally gotten to the point where I feel that I KNOW what I am doing and frankly, they do NOT.  I’m no Diva and I dont want to seem like one but it was pretty bad. It should have flowed...we should have it down pretty well by now, even given the challenges, but we just do not.  And no one seems to care. It actually surprises me that I care as much as I do.    

I did an ok Yizkor service- i usually do it alone- but I was done after that.   I tried to keep my composure but that was enough.  I ate something ( I sipped on ginger ale in the morning) and lay down and texted with people until about 6 PM, then I packed up all my stuff  (not easy!) including food, clothes and tech, and drove to Waltham for the last hour or so.  The final service is Neilah so its pretty much just the Cantor at the end doing the final service, Amida, then shofar, havdalah and maariv.  With only 20 or so people there and no break- fast after, it was kind of anticlimactic.  I was asked to come to Malden for that but I knew I would not bother.    

When I walked into TBI, I realized that some people there had not seen me in my lovely new ultra short hair cut, and I was mortified, but I could have had an ear coming out of my nose and to their credit, people probably wouldn’t bat an eye. Thats one thing about TBI- the quirkier the better.  MG is always super nice to me.  (RDF  had originally been a little freaked when I told him my diagnosis and I had offered to help HIM get through it!) Everyone is nice, really.  M had a friend with him whom I recognized so I attempted to speak to her but of course I sounded like an idiot.  Small twinge of unfounded jealousy there.  Because, well….me. 

Blurg.  🤦‍♀️

And so a chapter closed on who shall live and who shall die for this year.   Good Luck everyone!! 

Twas the Night before Kol Nidre

 Twas the night before Kol Nidre and all through the day, 

Phyllis was trying to just get away…

From her iPhone - the texting and crosswords and such,

Because she knew she had not practiced much,

While it’s great to lie down and have a good nap,  

She’s much more concerned about finding a cap, 

That will cover the fact that her hair isn't there, 

In hopes that she will look cute and not care…

So off we go to chant and to pray,

Shana Tova to all, and have an easy fast day!!

The Plastic On(c)o Band

 Today I met Dr Chatterjee, a very nice young oncologist/ plastic surgeon 

( Educated at Penn and Dartmouth, so he is not a “double Jumbo” as my other surgeon called herself ( two degrees from Tufts). 

This man’s job is to fix me so I look good after the surgery to rmove my tumor is done.  What is done is not a “lumpectomy” but its not a mastectomy either.  They get to take more from the bad side, take some from the good side and make me even, but also smaller.  ( if any men are reading this, please feel free to skip ahead, there will be no quiz).   

This actually allows the surgeon to be more agressive in taking a larger margin around the tumor.  Otherwise, he says that sometimes they have to go back in.  With this surgery the risk of that is smaller.  

They already decided that surgery will be mid december on a Monday. I just have to wait to get the date.  It should be a few weeks after chemo is over.  

To be honest, like most women, i just feel like “ just get it out, i dont care…” but maybe I’ll look better when I’m 80  (if i make it that long )

Anyway I came home with a folder of kick-ass journal articles that Dr Chaterjee ( he introduced himself as Sonny) has co-written,  guaranteed to lull me to sleep later.  Also a page of statistics showing that Tufts has the highest breast conservation rates compared to national data including DF and Brigham, and largest volume of advanced oncoplastic techniques. Obviously I am aware of how stats are subjective and can be manipulated to show best light,etc,  and every case is different, but they are pretty high on the positive outcome scales.    

Sunday 9/11/21

 

Just a quick update because I have been feeling pretty good the last couple of days. I am going into the last week before my next chemo session on 9/20, and I guess my body is in the “recovery” phase -it has to so that it can be ready to handle the next round of crap.

Except for some tummy issues and the resulting dehydration, I have had a lot of energy and am trying to get things done – errands, laundry, etc.  Eric's sister Dianne G came to visit, and today Catherine came and we played Scrabble.  Catherine and I couldn't be more different (well that kinda goes for me and Dianne too maybe, but not as much).  It has been great weather to sit outside.  I hope my energy lasts through Yom Kipur… then I can take whatever is coming. ( I hope)

Little Successes And Failures

9/9/2021 - Friday

 Little Successes and Failures. 

Today I woke up feeling very good. I ate a bit, attended a morning zoom minyan and tried to tidy up. Now, for pure entertainment value I must tell you that I then spent an hour trying to pee in a cup at the doctors. I thought I might have a UTI and I wanted to nip it in the bud before the weekend. However, I must have been very dehydrated. I had been drinking water, and then I had to ask them for a can of ginger ale. I knew they have it because I have had some when I go for chemo. It was funny but i was mortified. I drank SO much! Nothing doing. 🤷‍♀️ I gave them a teeny bit and the nurse ended up calling in an antibiotic for me anyway.

But then i went to the bank AND to Papa Gino’s! I had a craving!! I felt so much better today.  I also had crazy dreams last night so i know I slept.

HAPPY NEW YEAR!!

9/8/2021

HAPPY NEW YEAR!!!

 Wow i feel a bit more human today. Achy, but ( and achy butt) I ate half a bagel and tried to clean up the kitchen. I was up at 4 AM drinking orange juice but maybe that helped. I plan to watch my friend lead a service online from CT, then get on for my own services. Basically just a rerun of yesterday. Of course I didnt write about yesterday because this isnt about that. Suffice it to say that all the months of singing on Zoom on Friday nights and Saturday mornings for Waltham made the transition pretty easy. However i was a bit draggy to start, but i was able to give it more as I went along and everyone later said they thought I did very well, all things considered.

just some ramblings 9/6/2021

9/6/2021

 Ok so this is more to keep me sane, but anyway, more early morning hijinks. I needed a tube of something that i couldnt find and was tearing the house apart.  Meanwhile i could feel my blood sugar plummeting but don’t have much in the house so i dug into this big cupcake we got at Blacker’s. (Because someone left the pedialyte bars behind). it looked like the hugest Hostess cupcake ever- only kosher and all that

Then i awoke with the most god awful foot spasm, which paralyzes my foot and only goes away with a heat compress. I need to go find a dr who can help me because otherwise i may gnaw my ankle off one night.   Didnt sleep much. Tossed and turned all night.  Just lower achiness. Alan got up really early. I felt hung over. Then started to feel queasy and heaved a bit but there was nothing to bring up but an old Tums.

I felt how i do when i don’t eat and my blood sugar get so low.  
After this short episode i felt much better.  

Some Random Posts

 9/6/2021

Some Random Posts

I just tried a blue raspberry pedialyte freezer pop. It wasnt bad. I think i might be wasting away without margueritaville. I hope i didnt toss all my skinny jeans yet.

More early morning hijinks.  I needed a tube of something that i couldnt find and was tearing the house apart.  Meanwhile i could feel my blood sugar plummeting but don’t have much in the house so i dug into this big cupcake we got at Blacker’s. (Because someone left the Pedialyte bars behind). it looked like the hugest Hostess cupcake ever- only kosher and all that.

Then I awoke with the most god awful foot spasm, which paralyzes my foot and only goes away with a heat compress. I need to go find a dr who can help me because otherwise I may gnaw my ankle off one day.
Didn't sleep much. Tossed and turned all night. Just lower achiness. Alan got up really early. I felt hung over.

Then started to feel queasy and heaved a bit but there was nothing to bring up but an old Tums.

I felt how I do when i don’t eat and my blood sugar gets low. After this short episode i felt much better.

Still feeling ok

 9/3/2021

How is everyone doing today? Since my first treatment on Monday I have felt pretty normal, so I haven’t quite wrapped my head around what i am going through. Thanks to everyone who has been checking in on me- my real and my virtual communities. I know everyone has their own stuff to deal with so just know that I appreciate you all!!