Monday, April 25, 2022

April 25, 2022 Monday--12:15pm

Good afternoon!

I managed to get laundry done and keep up with the "have-to"s.  In fact I am back to doing some laundry this afternoon because I really don't want to get that far behind again where I have more than two loads.  Becomes overwhelming when you live in low gear.  So I am aiming for one load at a time for a while.  ;)

Surprise--Dagan had the day off and wanted to take me to my infusion appointment on Friday!  That was a treat.  He finally got to see how the whole thing goes with his old mom.  :)

People were teasing him--"You're not Leah", etc.  I introduced him around.  We went in to get my port set up and blood drawn.  Had David for that and he was saying to Dagan how strange this must all be for him or something like that...Dagan said how he was very used to hospitals...and that opened that keg of worms--LOL!  Dagan and I were talking about his heart and how he wasn't supposed to live and how many pacemakers he's had and how he was one of the first people to have "angel wings" used to close the hole between his top two chambers (not called that anymore--doctor sold the patent)...and we left the room arguing about how old he was when he collapsed at the golf course driving range and ended up in a wheelchair for a few months before the angel wings were put in at University of Minnesota hospital...

We do have some strange-to-other-people mother-son conversations--with a lot of laughing.

Then we went back to the waiting room to be called to see Dr. McCune.  My bloodwork looked good and he said I could make an appointment for a CTscan to be done in the three weeks before my next infusion.  We discussed the possibility of IF (a big if) the tumors did disappear whether I could stop the Keytruda treatments.  McCune said he would check into that with people who were more in my category.  Admitted he didn't know enough about stopping treatments if there were no tumors.  I like that he is open to suggestions and listens.

Then we waited there in the doctor's exam room for the next step--to be taken to the infusion center.

BUT--one set of tests hadn't come back yet on my bloodwork and another nurse came to tell me that I couldn't get my infusion.  The count that was low last time to where I almost couldn't get it, if you recall.  Well, this time it was even lower.  This has something to do with the ability to fight off infection.  Not the actual white blood cell count but something else.

Anyways, it is a good thing I had that feeling I should be in quarantine the last month or so and have been extra careful.  They don't want me catching anything--bad cold or whatever.  I'd have a hard time fighting it off.  

Anyways, the nurse (I am so bad at names but I have had her many times and she's a real sweetie--Kirsten maybe?) asked Dagan if he'd like a tour of the infusion center since I wouldn't be using it after all?  Sure!  So she brought us back and Dagan got treated like a rock star!  Was so funny!  All the big grins and welcomes!  Turns out someone said something to him about his heart--so David had filled everybody in apparently.  ROFL!  It was really sweet and funny, too.

After all, he truly IS one of those "miracle babies" all grown up and they still don't know why he has done so well.  Studying him now, actually.  When he was three months old and we got the diagnosis any kids with a similar series of defects usually died before they were two--most way before--and there was only one girl alive who was five who lived in France.  (I often wonder what happened to her.)  His heart was already three times the size and pushing into his lungs--and he had the tail ends of pneumonia.  They sent him home to be with me for a while--a day, a week...possibly a month.


The next time he was in the hospital he was 2 1/2!

His patched and re-patched up heart is still going strong and is totally and completely embedded in mine.  :)

Anyways, now I have to go back this Friday for bloodwork...and hopefully will be able to have an infusion.  No doctor visit this week.  Will just be a yes or no from the bloodwork. 

I have a tentative CTscan appointment on Monday the 9th of May.  Supposed to have a scan after my next infusion but I think I should have it regardless, of course.  If all goes well I will be then back on the every three week infusions.  All up in the air right now.

Dagan came in afterwards and did the tasks (trash, vacuuming, getting high up stuff).  We sat and chatted a bit--with our masks on.  Despite the bad was just a wonderful day.  Still makes me smile to remember how the staff greeted Dagan like they did.  Even people I have had no contact with at all--LOL!  

We had rain--and that night we even had thunderstorms.

Been chilly and snowing and raining and melting.

When it snowed I put out more seed because the birds come a-flocking for a meal at the Critter Cafe.

On Saturday I finally tackled the stack of forms for Federal Housing I have been avoiding for a couple of weeks.  Went to make the many copies they want you to send with the paperwork and the printer isn't working.  Out of the blue.  Had just used it the week before.  So, Dagan is coming by after work tonight to see if he can fix the problem.  (Yes, he's back in the office every day now that the numbers are down and he has the new position--wears his mask, though, when he's around other people and not alone in his office--even if others don't.)

It was crazy warm on Saturday!  I saw 67 degrees at one point.  No rain--so I could open the patio door wide...and Annie went nuts!  She raced around the apartment for a little while how cats do and attacked her toys with vigor I haven't seen in a while.  

Honestly--made me cry.


Well, I haven't talked about this because it is just hard...but we figure Annie has been dealing with diabetes for a couple years now.  She suddenly was thirsty all the time and drinking more water than she ever had--and then hungry all the time, too, and eating more than she ever has...but still was getting thinner and thinner over time.  

Leah and I researched online and it appeared to be diabetes.  The best natural thing we could do was feed her raw meat and grain-free canned foods...which we did.  Probably why she has lasted this long.

Another sign is weakness, lethargy, and then they won't be able to jump up on furniture like they used to.  Finally they go into a coma.  Annie used to jump from the floor onto the arm of the chair to sit by me up until maybe a year and a half ago or so.  Then she started using the footrest to get up (half the height).  I noticed she was having to rock back and forth thinking about it before she jumped for a week or two before I got my booster shot.  She never once jumped up with me onto the chair while I was so sick from the shot...or since.

Now Annie is our strange, autistic, timid, rescue cat, as you know.  She doesn't like to be picked up.  She can only handle so much stimulation from petting or neck scratching--even though she purrs the whole time.  We thought she might live under my bed when Dagan and Leah brought her over about five years ago (after Karma died).  She was so miserable without her companion, Sammy, their other cat who recently died before Karma did.  (Sammy and Annie were sold together because they had bonded at the rescue center--I'm sure they thought shy, antisocial Annie would never get a home otherwise.)  

Annie was terrified of Ian from the time he was born and they had another scary little person on the way, too.  Annie hid all day and only came out after Ian was asleep.  She was never friendly, easily scared, didn't trust people, and was already somewhere around 11 or 12 years old.  So I agreed to take her...and they got Blink who is as opposite from Annie as you can imagine.  (So glad the boys have been able to grow up with a lovey cat who wasn't afraid of kids!)

Truth--even if I was rich and could afford to treat Annie for diabetes--honestly--I wouldn't do that to her.  Plus, she wouldn't let me, anyways.  One shot.  One pill down the throat.  I'd never get near her again and we would destroy all the trust and bonding we have slowly built up over the years.  She has learned to trust me as much as Annie is capable of trusting a human and she has been so happy here with this old lady in our quiet apartment.  She's probably 16, going on 17 years old.  I want her to live feeling happy and as safe as Annie can feel (which she does with me) for as long as she's got.  

But now it is a matter of waiting to have Annie tell me when it is time to go.  Makes me sad to think of bringing her to the vet (where she will be scared, trembling, and trying to disappear by making herself as small as possible...and I don't know how much comfort even I will be but I will be right there and I am the trusted human as much as she can trust).

All the barfing is also a symptom and that has increased over the past six months or so.  I am watching everything.  Waiting.  So that is why I cried when she raced through the apartment with the joy of a truly warm spring day (which disappeared by the next day--it's 28F right now BTW).

The good news is I have always let Annie come to me since she has always been one to run away and doesn't like to be picked up or held.  But now that she knows she can't trust herself to jump up on my chair anymore...but she misses me because she follows me every time I go to the bathroom just to get some neck scratches (her favorite) and a little petting...I offered to pick her up and put her on the chair before I raise the footrest.  She didn't understand at first--always mistrustful, she thought it was a ploy to capture her.  But she was curious enough to come closer each time.  Finally she was close enough for me to pick her up--stressful for Annie--but I released my hold right away after the footrest was up.  She didn't stay long but got in some neck scratches.

This has been going on for over a week--and now she knows the routine and she is staying a little longer.  If she wants to come up she knows she has to come close enough to the chair that I can reach her easily.  If she doesn't want to she stays out of reach.  But I offer to bring her up on the chair with me and she knows the routine now.  I don't even have to really keep hold of her once she's up while I am doing the footrest anymore the past few days.  So Annie and I do have a little snuggle time once again.  She doesn't stay as long as she used to.  New things make her nervous...but she also isn't feeling her old self, either, I don't think.  All her autistic tendencies with stimulation seem amped up.  She has to leave in a fairly short time but she is purring the whole time she is up here with me.

She's looking a little scruffier.  Her coat isn't as shiny.  She's losing a lot of fur this spring.  Not sure if it is more than normal, though--been harder to brush her.  So funny she has white whiskers on one side in her old age.  Notice her right ear--lost the tip of it from either frostbite or an aggressive male when she was a street cat in her youth.

So...part of my lack of motivation lately is not due to the Keytruda keeping me tired and listless...which it does.  This--Annie--has been on my mind and keeping my attention.  I'm spending as much cuddle time with her as she can handle and wants.  I filled Dagan in on Friday.  Leah is looking for a vet (we didn't like the place we were going to when Sammy and Karma died) who will be caring and gentle with a timid, timid cat.  We need to have a plan.  Any of you who know how this goes with pets--Annie could remain about the same for a while or go downhill rapidly...but I know she has gone past that point where she is going to get better, you know.  When she stopped being able to jump up on my chair...  

That was three weeks ago.  I don't want her to suffer.  She's a bit uncomfortable right now, but doesn't appear to be in any pain and is still active but slower and sleeping more--eating and drinking, peeing and pooping--all the things.  So we will have as many good days as possible before we have to say goodbye.  

In the meantime...Dagan will come after work to see if he can get my printer talking to my laptop again.  I have clothes to come out of the dryer.  I need to set up the small stack of letters on my desk so they are ready for some paper chats this week.  The snow is melted once again.  We're supposed to head back into the 40s tomorrow for the week.  Birds are eating on the patio.  Spring is trying to arrive still.  ;)

Wish me luck on Friday that I can get an infusion.  I need them till the tumors are gone, for sure.  I don't want the trajectory to change, you know?  Well, who would--LOL!  Thinking positive.  You all are a blessing to me.  Till next week...

Monday, April 18, 2022

April 18, 2022 Monday--1pm

Good afternoon!

Was a week filled with company wearing masks.


I do see a lone partridge without a mate now and again.


The CLS annual review lady, Tammy, showed up at 11:30am!  I had written down Thursday but she had written down Tuesday.  (I have pen and paper right next to me here and had written it down because I know my ears and brain aren't totally reliable anymore--so who knows.) 

 Anyways, luckily I was up and dressed because Katie was coming to clean.  Tammy is really nice when she's here.  I didn't know she oversees five different companies--one of which is CLS, my cleaning company from the county.  So I guess that is why she's always a bit frazzled about setting up appointments.  Sweet lady, though.

Then Katie came to clean from 3-5pm.  She knew the other lady's name was Tammy.  (I am never sure because I swear my federal housing lady's name is also Tammy.)  Anyways, I'll see Katie again in about a month or so.  (She leaves it up to me since I am the one with all the unpredictable health issues.)  Katie's always a pleasure to be around.  And the only one who wore a mask right off.  I had to ask Tammy who went out to her car to get hers.


Snowed again.  

Actually had a pair of partridges visit.  I don't see much of them anymore and probably won't till fall.

The maintenance man came to fix the washing machine.  This time he forgot his mask and went to get it for me.  Was here over two hours.  Told me to wait at least 24 hours before I used it.  [Truth--still haven't felt up to it.  Maybe today.]

I made a point of thanking him for wearing his mask and for the excellent job he did on my garage door.  Told him that Leah sent me a picture to show me.  New seal and it goes down to the ground again!  Just perfect!  He smiled and looked like he might have almost blushed under his mask.  :)


It's hard to tell because my windows are so dirty from the winter, but there's a robin up on the little table and a mourning dove eating on the ground.   First mourning dove I've seen this year.

Spring is really here.  At least the critters think so.  All the signs--hearing geese overhead, robins, grackles, and now mourning doves.  I think they jumped the gun a little this year--LOL!

I've been on late hours, we got a notice that they were having apartment inspections from 8am-5pm, so I slept in some clothes (have to sleep in my chair anyways) with no alarm.  Good thing I did that because a young lady was here from the office at 8:30am knocking on the door.  I asked her to go get her mask, too.  She said she had one in the office (how I know she works in the office--lol!) and was right back.  

Weirdly--she just took photos of all the appliances and that was it.  She said they wanted to know what shape things were in for the budget.  As she took pictures of the frig, microwave, and dishwasher I told her that I had just had the dryer fixed not long ago and the washer was just repaired on Wednesday--and that was why there's so many clothes piled in baskets on the dryer.  She took photos of the washer and dryer and off she went.  

I suppose all the appliances are starting to have issues.  Nothing lasts that long anymore and it's been...what?...going on seven years since they opened?  I think I moved in August of 2015 and I was second to the last to move into this first completed building.  How time flies.

Leah came over Friday night for the things I need help with.  We keep masks on.  Since Katie was just here Leah didn't have to bring out trash or vacuum!  Nice!  She helped me with some computer stuff and getting things I can't reach without a stool.  Things like that.  She is such a blessing!  Just plain love her so much.

I really hope my legs get to feeling more trustworthy so I can do my own stool climbing pretty soon.  They are improving--slowly.  Still have worse days and better days.  I can basically feel from my waist to my hips pretty normally now and the backs of my legs are at least more consistent with being able to feel them.  The fronts are still pretty weird most of the time...but all that is a lot of progress!!  The nerves are coming back to normal, I think--but they still feel so very weak and noodly a lot of the time.

Was a sunny day and 21 degrees.  Most of the snow was melted away.  I looked out on the patio and saw this!!!

I couldn't believe it!  A momentous event!!  Caught some pics even though the blinds were only cracked and not open.  We have few trees and they are young.  Not sure from whence this little one traveled but it was glad to find something to munch on.

And then--it made a trip up...
...and down the screen.  Blocked off by the balcony above.
Annie was stunned!  She probably hasn't seen a squirrel since she lived on the streets as a pregnant teenager.  That made our day!!

So--my can brief company make you that exhausted--LOL!  I am still dreaming about working on bookcards--LOL!  These cancer treatments take more out of me than I think they do--or care to admit to myself, I guess.  Just because the immunotherapy is WAY WAY easier on me than the dreaded chemo, they still keep me pretty tired, weak, and listless.  So much easier to deal with just being a noodle...but I guess I thought maybe I'd get more used to it and be able to do more.  

Oh well.  I'm okay and managing to keep up and be almost all on my own these days so that's a vast improvement from being the chemo invalid I was.  The booster shot set me back for quite a while there.  Seem to be past that now and am feeling halfways decent again.  Staying in isolation or quarantine as best I getting pics of what McFamily has been up to are a treat.

I think this was about a month ago that the boys were decorating homemade chocolate candies!  

Dagan, Ian, and Liam glued to a video game.

Always nice to see Blink.

I heard about them going to a wall/rock climbing center a friend of theirs owns.

Looks like the boys had a grand time!

This week--I don't have anything until Friday's infusion and Leah's visit afterwards.  If nothing else I will continue to get the have-tos done, watch great shows & movies, and have wonderful paper chats with my pen pals.  If I get to anything beyond that...will be a big plus.  ;)  

Oh, and Leah dropped off some of their Easter dinner last night!  So I will be having some yummy lunch as soon as I post this.  

Till next week... 

Life is good!!  :) :)

Monday, April 11, 2022

April 11, 2022 Monday--noon

Good soon-to-be afternoon. 

Well, it was a very quiet week.  I finally ate on Monday and then promptly had diarrhea for two days.  Am feeling better but am still very, very tired.  I certainly didn't expect to have this bad of a reaction to half a dose of covid vaccine.  That proves to me that cancer treatments (even immunotherapy) do effect your immune system.  No wonder Dr. McCune cautioned me about getting sick at all--even a bad cold.  :(

My immune system has been compromised for a couple of decades due to fibro so I guess it is a good thing for me to kind of remain in my own quarantine bubble as much as possible.  (A lot of why I have not visited McFamily much all winter--only twice.)   But now I am being even more cautious.  Even Dagan and Leah wear masks when they are here.  Kind of weird, but you do what you have to do.

On Monday afternoon the lady from CLS called about my annual review at-home visit (for my cleaning service) and wanted to come the next day.  She does this every year--last minute.  She even called me in the morning one year wanting to come the same day.  Well--not this time.  I was sick with diarrhea by that time and so she asked to come Thursday.  I hoped I would be better by then and said fine.

On Tuesday I suddenly realized I hadn't walked down my rent check!  So I had to clean up and dress.  Wrote a note about why it was late (but I think we have till the 7th to pay) and walked it down to the office.  No one is usually there but we have a rent pay box outside the door.  I asked in the note to please email me the proper mailing address for the company (included my email address) so I could set up automatic payments with my bank.  (I tried their own system when this company took over and had issues so I dropped it and went back to writing out checks.)  I have not gotten an email yet.  Probably won't.  

I will have to call and try to find someone who can give me a proper rent paying address and then Leah can double-check that I have set it up correctly with my bank.  I pay my eye doctor that way so I know how to change amounts or cancel, but Leah set it up for me.  Anyways, need to do that before the end of the month--hopefully.  I am so slow and so spacy with brain fog that I make no promises about remembering anything these days...even when I write things down in my bullet journal--LOL!

So, I made it down to the rent box and back...had to rest my wonky legs for ten minutes before I could make it down to check my mail.  That kind of a week.  Lots of resting.

I can't even remember if it was Tuesday or Wednesday when the maintenance man came knocking on my door to fix the washer.  I must have looked like death warmed over because he didn't hesitate at all to say he could come back next week.  Told me to rest and take care of myself.  He is coming back on Wednesday afternoon.  

It was on Wednesday we had quite the wind storm with rain, sleet, spitting snow and wind gusts up to 60mph.  The wind did a number on Dagan and Leah's patio gazebo!
Tore the canvas top apart!
And then--do you see the brown cushioned chair below their deck?
That heavy chair got lifted up off the deck, tossed down the stairs, and ended up way out on the cement patio!

Because the CLS lady was coming on Thursday I pushed myself to tidy up, clean poor Annie's cat box, wash the blankets I use for my chair at night...while the wind howled all day at 40mph.

My days and nights have been a bit flipped still so I set an alarm so I'd be up because the CLS lady said she couldn't come in the afternoon.  Well, she never showed or called.  And I was too tired to care.  She still hasn't.  It will hit her at some point that she needs my paperwork done for the year and then I assume I'll hear from her again.  AND I do have Katie actually coming to clean tomorrow so I can tell her about it, too.

Friday Leah and Aaron went to Costco and dropped off my groceries.  Was a better wonky legs day so I brought the cart out to Leah's car in the parking lot.  Leah came by later toward evening to do the weekly stuff for me that I have trouble doing trash and vacuuming.  

Over the weekend I was finally able to write letters--tada!  At least I got something accomplished on my otherwise pajama weekend.  :) 

Dagan stopped by with a small Cashwise groceries order for me on Sunday night.  He stayed for a short chat.  Wore his mask and stayed at the kitchen table and I stayed in my chair.  

So the week was almost a total pajama week--LOL!  Today I am up and dressed (so I could get my mail really).  It's dark and drizzly outside...40 degrees, though.  Tomorrow Katie comes to clean and Wednesday our nice maintenance man will come to fix my washer.  Leah or Dagan will come by sometime end of the week to help me out with tasks.  So--busier than usual, but everyone will be wearing masks.  Glad I don't have another infusion until the following week.  Sounds exhausting.

Anyways, almost back to pre-booster shot--LOL!  Hope to have some spoons this week.  I was dreaming about making bookcards--ROFL!  ;)

In the meantime, I am resting up and doing what I am able.  Getting letters written feels good (paper chats)...and have sent out some bookcards!  I forgot how much fun they are to write in.  Just something different, I guess.  You know how I love variety.  I really do love snail mail so much.  Hand writing and blogging are my social media--LOL!  You all are my lifeline.  I am so grateful for your friendship.  I cherish my blog and my snail mail families.  :)

Have a good week.  
Till next Monday...  :) :)

Monday, April 04, 2022

April 4, 2022 Monday--11:15am

Good Morning...I guess.  Let's just say I can't believe it is already Monday.  I slept through the weekend. I think I am up to posting a brief blog.  Don't worry--it was because of my covid booster shot.  I am slowly feeling more human.  I just have a terrible time with these shots.  It turned out that even half a dose with the booster wasn't any easier.

Last Monday decided that I would stay in isolation again.  Even wear masks with Dagan and Leah because they were going to be exposed more.  Dagan's got a new job at the same company and has to go in more often.  Leah and the boys especially want to spend some time with her grandparents and her aunt is coming from out of state for Easter, etc.  Yes!  Yes!  They should spend time with family and not worry about me, you know?  

I had been having a feeling that I should be really careful again lately...for some reason.  I didn't feel that way even when our numbers were really high for a while.  So good time to quarantine, I guess.  Dr. Kessler asked me when I was in if I wanted to get my booster shot.  They changed it from 6 months to 3 months for seniors and vulnerable folk.  I said I'd think about it but passed.  I knew I had my infusion coming up in a week and I could be sick for a while...and since I had three full doses already...maybe I could wait till June like was first planned.  (I hate how sick they make me.)

But then I thought maybe I was getting all these isolation feelings because I needed to take the booster to be safer?  And really--half a dose?  Can't be as bad as a full dose, right?  So I figured I'd ask when I went in for my infusion.

By Wednesday we had a wet sloppy snowstorm with 30-40mph winds.

On Thursday I decided to prepare in case I did get sick from the shot.  I did laundry, baked some fish, finally baked those brownies, and set up the next batch of letters I had on my desk so they were ready to go...another dozen waiting for me.  Aren't I so lucky!  :) :)
All the snow melted away again.  I grabbed a couple shots of a pair of partridges while I could.
I rarely see partridges anymore. 
 They have obviously paired off and been busy making nests and preparing for new families.

I thought that since I had really prepared for being sick that I probably wouldn't be as sick, you know?  Isn't that how it usually goes?  

Friday--Infusion Day.  Leah said she would come with and we could just wear our masks the whole time even in the car and at my apartment.  My blood pressure was down--good!  Bloodwork was good.  We were talking to the nurse in the infusion center about how if the tumors shrink away I could get off of the infusions.  Nope.  People are normally on them for two years to be on the safe side.  We didn't know that.  

Then I went up to the covid shot area and got my booster after I was done with my infusion.

Leah came in to do the helper stuff for me, we both wore our masks and kept our distance--like I do when Katie comes to clean.  Since I had a morning infusion last week (to avoid Kobrossy) Leah was gone early, too.  By 5pm I was shivering and temp then but that came in another couple of hours. And from 5pm Friday until 10am on Sunday (when fever broke) I basically slept.  Was miserable with body aches when I did wake up so it was good I slept.  I woke to pee or to feed my crying Annie or to refill my water bottle and that was it.  I still slept through half of Sunday, too.  But last night I finally slept with the lights off at least.  I never knew if it was day or night...or what day it was...till Sunday--and what a shock!

I obviously never wrote any letters or ate anything I baked--lol!  Maybe today.  But right now--I may nap a little again.  Feeling less violently achy.  No fever since Sunday morning.  How can a person be this tired after sleeping all weekend--LOL!  I'm on the mend, anyways.  Can you imagine if I actually got covid!  Wouldn't be good.  So I have had my three full shots and a booster.  Maybe now I won't feel quite so strongly about isolation?  We'll see.  Too tired to think about it right now.  

 So that's it for this week.  I am sure glad the worst is over with and the covid booster is behind me now.  Probably going to be a very quiet week.  ;)

As sick as I get...I still encourage everybody to get their vaccine shots.  Most people don't react as badly as I do and some have no reaction at all.  Be safe.  
*love and hugs*