Monday, September 26, 2022

September 26, 2022 Monday--11:30am

Good morning!

I started off the week by just clearing off the washer and dryer before Keanna came to clean.  Stuck all that stuff into the bins I had in the bedroom...which are still there waiting to be gone through.  Maybe this week.  ;)

Tuesday

I did find that spider before Keanna came...and Allie alerted me to another one, too.  

Keanna is really nice!  The time went by very quickly. She's only here for an hour and fifteen minutes and we were chatting a lot--getting to know each other.  Keanna is married and has a couple of cats that were both rescues...one was from Cat's Cradle.   She got to see the partridges her first day here to clean...and even saw the little baby bunny coming up to the screen looking for Allie.  (Yes, the bunny looks for Allie, too.)  Now that Keanna knows the lay of the land, so to speak, she will find her own routine...and she'll be back in two weeks.  :)

Wednesday

I finally felt up to tackling two weeks of laundry and testing out the washer.  Started with a small load.  It worked!  Tried another small load.  Worked!  Maybe Gerald has that magic touch like Dagan does with computers...fixes them sometimes when they don't even know how or why it works after they have messed with them--LOL!

So, I finished up with regular size loads.  All went well.  No crazy bouncing slamming washer.  I did get all the things I needed to hang up put away but I still have a big basket of stuff to fold and put away.  Yes, that is the kind of week it has been.  No surprise.  Seems like when I have any kind of project or go anywhere or have company I end up with a spoon deficit.  Just takes quite a while to regain my normal few spoons--LOL!  That's just how it is for me on immunotherapy.  

Thursday

I got out to water on the patio and put out fresh seed.

I no sooner finish up and the customers arrive--LOL!
Leah and her brother, Aaron, did their shopping trip to Target and Costco...and this time even to CashWise the same day.  Dropped off groceries for me.  I had the cart full of donation bags to go to the garage so I made a trip to the garage before meeting them in the parking lot.  Two birds, you know?  

Friday
Cottontails from past litters do come by now that the weather has changed.  Everybody is looking to fatten up before the real cold arrives.  Here's a half-grown young cottontail...
...and a fully grown one.
Love these cool days and chilly nights.  Everything looks crisper and brighter to me.  My favorite, favorite time of year!!

  Never fails--when the temperature drops the cats get cuddlier, too--LOL!
Saturday
McFamily stopped over for a short visit after attending a birthday party.  Dropped off some food Leah precooked for me...and the boys searched out all the cat toys under the furniture.  Tons of them!  Allie is wilder than Annie was with batting the toys around.  She also loves to flip them in the air with her teeth.  

So different to have a social cat who wants attention.  The boys like it, too. 

Makes me think of shy, scared Annie...and that she is somewhere now where she isn't afraid anymore. 

Allie was SOOO excited to have her big catnip fish toy back...that got lost quite quickly because it was a favorite.
She beat it up, licked it till it was soaked, and laid on it for a couple of hours after they left.

Sunday
Was a total pajama day.  Was a nice sunny chilly day to feel sleepy and achy.  Today might be another one.  Has been so far.  Leah has told me that if I feel crummy and am so exhausted to just take it easy and not keep trying to push myself all the time.  So I've been trying to do that more often.  A lot of days (most days, to be honest) I have absolutely no choice in the matter, of course.  I have really had to learn to lower my physical expectations over this past year.  Today--my project for the day is to make some soup in the big crock pot.  Which means I have to figure out how to set the buttons on this thing.  YouTube?  Call Leah?  LOL!  Wish me luck on my challenge for the day.

Have a wonderful, wonderful week!
Chat again soon!  :) :)


Monday, September 19, 2022

September 19, 2022 Monday--12:30pm

Good afternoon!

So far the KitchenAid mixer...

...and the beehive blender are sold and gone.
Just have the Cuisinart and all it's attachments and blades left as far as my kitchen appliances to be sold.
Getting more and more room on my countertops--LOL!

Ever since Allie saw the baby bunny on the patio she has preferred this bed back in the corner where she can comfortably keep an eye out there.  Trouble is...
...it is too comfortable and she dozes off--lol!
She does keep an eye out, though.
Patiently waiting for it to return.
 Maybe she thinks that it is like a kitten?  She doesn't want to hunt it...she loves it.

Monday
While I was sitting here watching TV a lady walked over from the sidewalk right to my patio just to tell me how much she loved my flowers.  :)

Me, too!  I will definitely want to have some flowers in my window wells!

Tuesday
Watched Jurassic World: Dominion on Netflix DVD.  It was fun to see some of the original characters again! 
I called for maintenance--three things.

Wednesday
Gerald was here.  He fixed my slow draining bathroom sink and replaced the last smoke alarm in the studio...but after taking the washer apart he couldn't find anything wrong with it.  I have been afraid to use it.  When Leah was here I showed her how loose it is in there and she thought it was too loose, too.  Will finally do a small load today or tomorrow.  He asked if I would try to take a short video if it does it again.

Leah came over that night and put together the new floor lamps for me.  I replaced the one by my chair...
...and the one by the art table in the studio.
So far it does seem easier on my eyes!  I can change the tone to add a bit of yellow so it isn't so harsh.  The addition of the yellow still helps even when you put it up to the brightest it goes.  I am very happy with them.  Even have remotes and touch memory and brightness adjustment on the pole.  What they don't think of these days!

Leah went to bring out the old floor lamps to the garage...but there was a spider on the keypad.  She is deathly afraid of spiders, called me, and I went out.  (Was truly bug day, I tell you!)  The spider went behind the keypad, of course.  The keypad has been really tough to slide up and that night it was REALLY hard.  I finally got it up and opened the door.  We breathed a sigh of relief.

I had brought my cart with me.  As long as I was making a trip out I did need some more bird seed.  Decided to bring in some smaller bags I had wanted to try...and came across a bag of seed filled with small black beetles!  I am not joking--it was called Bugs 'n Berries!!!  There were no live bugs in it when I bought it!!!  Maybe it had bug larva in it?  Be forewarned, people!!  They were crawling inside and even a few outside of the bag!!

I have scissors in the garage--took it over into the grass beyond the garages and dumped it out for the birds.  

Creepy crawly night continued after Leah left, too.  I had a giant cricket up on the wall above my AC!  Got that one.  About an hour later a big old black spider on the wall by the AC!  But I missed that one.  It fell down and ran behind the heat register never to be seen again.  At least--so far.  

Allie watches for the baby bunny.  
I watch for the spider.

It is that time of year where all the bugs are trying to find a way inside where it is warmer.  Mice and such are doing the same.  Fall is here.  Chillier nights and cooler days.  My very favorite time of year...except for the bugs.  We've never had mice here--knock on wood.  Not out in the garage, either.  In this apartment complex every fall we have dead and barely moving crickets scattered about the hallways.  They are always half dead when they make it inside.  Can't blame them for thinking they might live if they could get warm...they always die.  But not in my apartment, thank you.

Thursday
Nice sunny day...but we lost electricity for 45 minutes in the late afternoon.  When it came back on it really startled me because I could hear this loud male voice in my bedroom--lol!  Here the alarm clock I haven't used for years had the radio come on full blast!?  So odd!  We've had short outages before and that has never happened.

Anyways, it wasn't just our complex.  We got a text notice from the electric company that the power was out in "our area".  Dagan and Leah live in West Fargo and their electricity never went out.

A little over two hours later--out it went again!  This time for an hour and 45 minutes.  My lift chair does have enough battery power to get you out of the chair but that's about it.  So I moved over to my old little tan lounger (has a footrest lever)...got my trusty oil lamp and some candles lit...moved over my writing paraphernalia and settled in.  
Allie paced--wondered what was going on and why I had commandeered her chair--LOL!  So very quiet.

Meanwhile, I got a call that I have a new cleaner coming from the county!  Doreen.  She'll come for about an hour and 15 minutes every other Tuesday afternoon at 2pm.  Nice!  I mainly need her to clean the bathroom and scrub the floors.

Friday
Got another call.  No, will not have Doreen...will have Keanna.  Same schedule.

Leah and the boys popped by around lunchtime to pick up the blender that had sold. 

Later they were back to bring me over to the clinic to get my stitch removed at 3pm.  They dropped me off and waited in the parking lot.

I have to admit--these paintings in the dermatology waiting room baffle me.  Why would you have two identical paintings hanging right next to each other like that?  The only difference I can see is the one on the left is a bit faded on the left side.  Maybe the sun hits it?
Hanging over to the right of the matching paintings...is this.
Why would you have a framed painting hanging inside of another framed painting?  The dermatology department is strange.

Anyways, the nurse clipped the stitch, yanked it out, and off I went.
Leah and the boys picked me up and we made a trip to Baker Nursery on the way home.  Was so much fun!  Leah needed something for a tree (iron?).  Ian and I headed for the house plants and there was such an array of pretty and silly planters & pots!  We laughed and laughed.  Then Leah and Liam joined us and we looked through the house plants.  I have been snooping online for low-light houseplants I could have in the basement...and Baker actually had a ton of them!  So exciting to know they have a good selection.  I'll be back after I am moved and settled in.  :)  We headed for my apartment.

The boys helped carry in Leah's big crock pot and some recipe books.
Ian wanted to show me how strong he was--that he could carry Liam on his back.
Leah had mentioned she has this big crock pot I could use to make my soups.  (I am the only one who loves soups.)  Might be easier and I wouldn't have to bring my big pots when I move.  I don't think I'd want to use a big pot on a hotplate, you know?  (We both keep trying to think of ways to downsize our stuff.)  I will be trying it out for soups and stews and other slow cooker recipes this winter.

I finally caught a picture of Allie's new friend.
Makes you wonder how many litters they managed to have this year!?
Later I began a huge project in the middle of the night on Friday (couldn't sleep after a 3 1/2 hour nap).  The fact that I have a new cleaner coming was the motivation.  I should have gotten before pics but I didn't think of it.  I haven't known what cleaning supplies I even have under the sinks since Caroline was here--LOL!  I had a huge Amazon box in the middle below the bathroom sink and stuff was piled high to the point of falling out when I tried to pull the baskets out on either side (which also got stuck because of things protruding everywhere).
I decided to do like the organizing shows I have been watching--pull every single thing out.  So I had the countertop...
...and the washer and dryer covered!  (The big box was on the floor.)
I did the same thing in the kitchen where the right side, at least, was overflowing and stuff was falling out.
Covered the countertop.
Yes, Leah's crockpot and my toaster are in the back--LOL!
I would work till my back complained loudly and then sit and go through cookbooks.  Finally finished in the kitchen yesterday (Sunday).  I now have all the cleaning supplies on the left side under the kitchen sink.  The current supplies.
I refilled the Amazon box (which fit so perfectly under the bathroom sink)...
...with all the stockpiled cleaning supplies.  Now all the extras are all in one place!
But you may notice that the two side basket shelves are still empty.  I need to finish clearing off the washer and dryer...both to finish organizing under there and in order to test out the washing machine.  
But this project has snowballed, of course.  I want to purge and organize all the medicines... Q-tips, toothbrushes, toothpastes...all the health related stuff...all the vitamins and supplements...all of it.  Which meant I had to get down any related bins from above the washer and dryer...
...which are now in the bedroom.  Five of them!
Allie has found all this fascinating and wants inside everywhere I open anything up--lol!
Anyways, it doesn't matter if the bedroom is a mess when she comes.  It's the whole bathroom and the kitchen & pantry floor I want her to clean.

All that has kept me out of trouble last week.

Some pics from Leah!
The boys playing the card game I got Liam for his birthday.
Liam's birthday cake.
Some of the fun activities the boys have been doing lately.  Learning to roller skate.
Using a push scooter.
And bowling!

They have a ramp for littler bowlers.  Liam uses it...
 ...but Ian doesn't anymore.
Looks like they had a great time.
Well, that's it from last week.  I need to finish in the bathroom...(or at least move the rest into the bedroom--lol!)  Tomorrow I meet the new cleaner, Keanna.  Was light rain this morning but now the sun is out and it is 73 degrees.  About time I get dressed.  I am so sore and tired that I am moving very, very slowly.  No surprise.  But I am so very, very happy to have gotten done as much as I have.  Feels like the first big pre-move purge project.  ;)

Dagan and Leah have been working on clearing out in the garage and Leah said this next weekend they will be able to start emptying the basement.  We've been texting back and forth about polishing and sealing the basement floor...an additional cat door for if Blink and Allie become really good friends (then both cats could go upstairs and downstairs but I could keep my door closed).  If they didn't get along we'd just keep the cat door under the stairs closed.  We're discussing cabinetry for my bathroom...it is all exciting and fun.

Hope you all have a stimulating and rewarding week.
Till next time...❤

Monday, September 12, 2022

September 12, 2022 Monday--11:15am

Good Morning!  What a week!  We've had some beautiful fall days, though.

Tuesday

Smoke alarm started chirping in the afternoon.  Loud and insistent--chirping five times in a row when it did.  Never had it quite that persistent before.  Leah came to my rescue about 2 hours later and took it down.  (Good thing Allie is a calmer cat about loud noises--Karma and Annie would have been going crazy!)  Turns out says on the back that if it is chirping five times in a row like that it means it is the end of the entire alarm.  Needed the whole entire alarm replaced.  Well, all three alarms have been here since they opened so I wanted them all replaced.  With the bad knee I don't trust to climb up that high and I can envision one going off in the middle of the night, right?  That's when they usually give up the ghost. 

I discovered that when you call the new maintenance number they gave us a couple months ago you get a call center now.  Options as to which number to press for which type of service and all that.  More impersonal.  I got a guy I could barely understand (India?).  He relayed the message and then I got a phone call from another young man who asked me to text him my address.  He showed up with two smoke alarms (probably no more in his truck)...but he was polite and efficient.  Things seem to be really changing around here.

Wednesday

Was doing laundry before my afternoon CTscan and the washer went crazy again!  You may recall how it went off the track or whatever it did so that the inside barrel where the clothes are was slamming from side to side.  That wasn't that long ago!  Luckily it didn't break until it was closer to the end of the spin cycle so I had super damp, soggy clothes but they weren't dripping.  Took all day to dry them.

Since I had the CTscan that day, would be shot the next day, and then had my infusion so early on Friday (8am)...I decided to wait to call maintenance until this week.  (And I may wait until tomorrow honestly--pretty exhausted.)

Dr. Kim (dermatologist) called me in the morning.  I have benign lichenoid keratosis (the bumps) that are no issue.  They may disappear or may not, but not cancerous and nothing to worry about.  With Keytruda you get rashes and this wasn't a rash so not caused by Keytruda.  

Okay.

I had not gotten the results online on My Chart from the dermatologist--well, at least by the last I had checked on Monday night.  Usually we get results right away.  (They even have a notice on the site that you will probably get results before your doctor.)  I wasn't as concerned about those results so forgot to check after they weren't there by Monday.  My Chart has had issues lately, as you know.

After he called I did check and the results were there.  I looked up benign lichenoid keratosis online and they "happen when the immune system attacks your cells for no obvious reason".  I saw images and mine are so small--whew!  Glad of that!  But not caused by immunotherapy which encourages your immune system to attack the cancer cells that try to cloak that they are dangerous...and they warn and watch because your system can start attacking perfectly good cells...but it has nothing to do with Keytruda??  

Anyways, went off to my CTscan...which was quick.  Another girl there recognized me by my cat bag--LOL!  And this was at the hospital!  I haven't been there nearly as much as the clinic--LOL!  I am being quietly recognized by my colorful, crazy, cat bag, I guess.  :)

Leah and the boys had dropped me off.  I texted her when I was done.  They took a long time to arrive from a nearby park.  The boys had gotten into trouble because they wouldn't stop playing and come when Mama wanted them to.  They didn't want to admit what they had done to get in trouble.  I told them everyone does things wrong...but if you can't face up to whatever you've done how will you ever learn not to do it again?  They finally did (in whispers)...and promised to listen to Mama and Daddy...and Gramma.  ;)

When I got home there was a note from Gerald (I'm sure that is my regular maintenance man) saying he had changed all the batteries in all three alarms--ROFL!  They obviously have a communication problem with this new system.

Fell asleep after home and slept till evening.  Then couldn't sleep at night.

No results came up on My Chart online for my CTscan.

Thursday

Caught three hours of sleep in the morning.

No results all day.

Friday

Up at 4:30am.

Still no results on the scan.  Checked right up until we were in the waiting room for my visit with Brittani.  She had them--but they weren't signed off on as final yet.  (Maybe short staffed?)  Anyways, she said that the tumors were unmeasurable.  Almost gone!

Wonderful!!  I wanted to know when I could get my next scan (4 months-January 2023).  Leah asked if the tumors were gone by then how much longer would I have to be on Keytruda?

A year!

A year?!

I'm sorry--all I could think of is NO!  

It's like telling someone who's been bedridden for a year that even if you are healed in another four months we are going to keep you in bed and feeling sick for another year to be on the safe side.

Brittani said that is what they recommend at Mayo Clinic, etc.  Leah seemed to agree with following what they say...because they think it will up the odds of keeping the cancer from coming back.  Well, I have four months to investigate and do research.  But all along I have felt like if they disappeared I would get off Keytruda (even though it always sounded like they wanted to keep me on for a while longer).  I remember talking to Dagan about it back when the tumors were first shrinking.  I thought I talked to Leah about it back then, too, but maybe not.

  That took all the joy out of the good news for me, to be perfectly honest.  Well, not all, of course.  But you know what I mean, I think.

I got home.  Leah came in and cut my hair for me.  (Feels so much better--thanks, Leah!)  After she left I fell asleep for a couple hours.  And still slept that night--for almost 10 hours.

Saturday

Leah picked up my KitchenAid mixer that sold!  Nice!  Everything I can sell goes towards my new future furniture from IKEA.  :)

I was a zombie-woman.  Two appointments in three days.  R&R day for sure.  I did order two new (not expensive) floor lamps from Amazon.  Wanted them for the new place, but figured I could really use them here now.  They have different ranges of brightness and tone.  I thought that might help with my aural headaches that seem to be set off quite a bit by bright light.  Can't hurt.

Sunday

I spent the day researching Keytruda online...again.  I looked on Mayo Clinic website and they didn't have a lot--and nothing new to me.  I spent a long time on the Keytruda website.  After all, they are going to try to give the best picture possible, right?  They want to sell product.

Looking up clinical trials and statistics...not much information.  It's only been around for six years so how much long term information can they have.  (That's my point of contention.)  

As I told you when I looked up information before (beginning of the year), there seemed to be mostly information on how long it kept patients alive and prevented tumors from growing.  Appeared to be mostly used as a palliative treatment to keep people alive when chemo wasn't working anymore.  Tumors can shrink but for tumors to actually disappear--well, that was unusual--"almost miraculous" it said on one website.  So how much information can they have on people who have had the cancer disappear?  (And mine are not completely gone yet--would still be considered a partial in statistics.)

There is some information on all kinds of cancers it has been used on.  They now also give Keytruda with chemotherapy, too.  Not much on clinical trials.  Statistics: I found one where it said tumors disappeared in 2 out of 299 patients or 0.7%.  Another had 6 out of 154 patients or 4%.  Another said 7% out of 270 (I'm not good at math so I don't know how many people that is-lol!).  Those were for various kinds of cancer.  The only thing I found about bladder cancer specifically (never saw anything about liver cancer) had some statistics on Keytruda being given along with chemo (how many alive after so many months)...if you wanted trial results for patients who could not be treated with chemo you had to ask your doctor for the results.  ??

So there doesn't seem to be a lot of information on patients whose tumors disappear.  Exactly what I suspected.  It is still on the rare side...but they are trying more things.

They do caution that patients who have colitis or immune deficiency issues may not be good candidates.  How the patients immune system can attack good cells anywhere in the body at any time during the treatment or even after treatment has stopped...and this could become fatal.

I already had chronic fatigue, fibromyalgia, IBS issues, and arthritis so badly for the past 20 years that I have been disabled.  All that exhaustion, joint pain, stiffness, headaches, sinus issues, and weakness has been worse this past year than ever in the last two decades.  All those symptoms are listed for Keytruda.  Yes, my eyes had been more sensitive to the light since my cataract surgery but now I am getting aural headaches regularly the past--what?--couple months?  Also bleeding gums.  And then there's the lack of focus and forgetfulness...swelling in ankles (and bad knee swelling just stayed).  Also, the weird bumps that are no problem and not caused by Keytruda, of course, because they aren't a rash.  I seem to gradually be getting even more tired and sleeping longer at times--other times trouble sleeping (another side effect listed).  

Honestly, it is one thing to endure all this while the battle is on-going, you know?  Being barely functional...having to have Leah still doing supplemental cooking for me...dozing off regularly...feeling like I have the flu most of the time...dealing with BMs that are like paste...even my teeth hurt...still don't trust to walk all the way to the parking lot at the clinic or hospital and have to have Leah drop me off at the door and pick me up...

But to tell me I have 16 more months to deal with this...an extra year even if the tumors are totally gone in four months...

My optimism...my patience...my very soul...is weary.

Even if you are healed--cancer free--we will keep you feeling like death warmed over for another year???  How will my body deal with Keytruda for that long?  I already have many reactions.  Many of the side effects have just been awful magnifications of all the stuff I have lived with for 20 years...but some are new.  They aren't severe enough to have forced me to stop...yet.  But I have only been on it since mid-December. 

Would staying on it another year actually be a preventative of any kind?  What are the actual odds?  Actual statistics?  And how much can they know in six years when it was started out as a kind of last resort treatment?  And there are still very few people who go into remission in the first place?  I could still get cancer again.  People do...sometimes years later.  Couldn't my body use a break?  Or do they find that people who go off of it right after the tumors disappear get cancer back right away?  I couldn't find any information on that.

I did find a telephone number for Keytruda for asking questions.  But aren't they going to want to sell it for another year?  Doesn't "to be on the safe side" sound logical to people?

So if I say I had mixed feelings about my visit Friday...that is an understatement.  I am thrilled that the tumors are almost gone.  Absolutely!!!  (I learned online that once they are under a centimeter they are considered "unmeasurable"--they can still be a dark spot on the Xray--just  too difficult to measure.)

I am definitely going to ask for some GA guidance on this one.  

I have felt all along that I wanted off of it after the tumors disappeared.  Is that just me thinking that because I am so tired of feeling so awful?  But I have felt that way all along when I wasn't feeling as badly as I have been as this year has gone by?  (I do feel like I have generally gotten worse the past few months.)  Is what I feel in my gut (and have all along) the right thing to do...or not?  Could my body handle a compromise of say doing every six weeks for another four months next year?  (Some people get treatments every 6 weeks and some get every 3 weeks I read online.)  Or would that push my body over the limit?  I am wondering how I'll even get through the next four months.  But I am still enduring to get through to the finish line--push-push-push...so I think I will make it--LOL!

It's a lot different during the battle than enduring all this after the battle is won, you know?  

Well, that's the week I had.

Good and bad.

The weather has been wonderful!  Fall is already here.  The partridges and sparrows are bunching up for the winter.  The grackles are already gone!

There's a covey of eight partridges that visit every day.
I got pictures several days.
Musn't forget Allie...who likes to be nearby part of the day.
AND--the boys watched Star Wars for the first time weekend before last!!

I think they were going to watch it again this last weekend, too.  They loved it, of course!  :)

Well, sorry to be so extra serious today but this is a huge decision for me.  I'd be bucking the medical community.  But I know they would have me coming in for scans and bloodwork to see if the cancer comes back...they'd keep an eye on me.  You know me well enough to know I will make up my own mind in the end--but I do welcome opinions and thoughts.  I will be milling this over for a while...and checking for more statistics.  What would you do?

Meanwhile...I have plenty to keep my weary brain occupied.  Looking forward to the move...and they haven't even started construction yet--LOL!  I haven't even managed to do more coloring on the Christmas cards...let alone pack up anything.  Just maintaining...enduring...and happy to have Allie here...and grateful for McFamily!!  

Patience.  Patience.
This too shall pass.

I'll take GA's advice from old:
When in doubt do nothing...everything will be made clear in time.