Monday, January 31, 2022

January 31, 2022 Monday--11:15am

Good morning!

I started purging this week.  Got through shoes, coats, and sweaters.  But the most important news has to do with my visit to the clinic on Thursday.  Leah said she could come with and I am sooo glad she did.  I don't know if she would have been able to believe me getting the information second hand.  Let's just say I am glad many times over that I have decided to avoid Dr. Kobrossy.

Okay--had my labwork done, waited for results, and then saw Dr. McCune.  We figured that pretty soon they'd want to do a scan and I wanted to try to make McCune my primary oncologist so he could make those decisions instead of Kobrossy.  

Well, McCune is part time and the lady I saw last visit is also a part time oncologist.  Kobrossy is the only full time oncologist at Essentia.  But McCune and the other lady doctor do the same thing that he and Ferrari with each other (opposite hours) to cover a full time position between them.  They both work at other hospitals, too.  

I explained why I would rather not see Kobrossy if I don't have to.  How he got angry with me when I was telling him about the neuropathy.  Leah backed me up as to how mad he got.  That Kobrossy said it was impossible, etc.  I said I understood that it normally wouldn't happen to a chemo patient until they had been on chemo for years, but if I had such a bizarre reaction to chemo why would the neuropathy be impossible, you know?  And I do have it--whether he likes it or not.  It is slowly improving.  I told him the toilet seat story and how my legs will just give out on me and be so weak that I can't get out of a they aren't there really.  Not that it has happened that often but for a while there Leah wheeled me around for my clinic visits because my legs were so weak (and I was so weak from starving to death) that I had to sit down all the time and worried I wouldn't be able to get back up.  Dr. McCune said that was neuropathy and it could take up to a year to be better.  He was glad to hear I have noticeable improvement already.

It was so nice to have a doctor look me in the eye...and wear his mask.

I also complained that I felt kind of left in the dark with Kobrossy's plans.  Like when I got all that information in the mail for the immunotherapy that had forms inside (for financial help) and he'd never told me anything about that coming and never explained it to me when I asked him about it.  (Got a don't worry about it--kind of poo-pooed it, you know.)  

Anyways, it had been in my records that they wanted a scan done before my next visit.  That's what started the Kobrossy conversation--when McCune brought it up like I should have already know about this--LOL!  [We only vaguely knew that it would be done at some point...and was one of the things we wanted to ask about.  (We made that appointment after my infusion that day--February 10th.]

When Leah asked about how long I'd be on immunotherapy or what the average was for people, as we know everyone is different...and could we schedule appointments ahead of time so we can get Friday afternoons...and did I need to see a doctor every time I had an infusion.......well, I think maybe then he realized how little Kobrossy had ever told us. 

I am on one appointment at a time because they are keeping a close eye on me and won't know till I come in and get bloodwork done if I will be getting another treatment.  Why?  Because people often do really well for a while but can suddenly take a turn for the worst...that could rapidly become life threatening in some cases.  The body's immune system that is being jump started to fight the cancer can turn on your physical body and start attacking where it shouldn't.  If we find out that my tumors haven't grown that is a win.

Leah and I were both rather in shock and speechless to be honest.  Kobrossy made it sound like my chemo reaction was a blessing in disguise (in fact I think he might have used those very words) because he'd wanted me on immunotherapy in the first place before I even started chemo (but had to because of insurance reasons if you recall).  He talked like I should have no or very minor side effects and the tumors would likely just shrink away completely because they were small to begin with.  My genetic testing made me a superior candidate, too.  So, needless to say, we had a completely different picture of immunotherapy.

Kobrossy had them call me to set up labwork but never told me he was going to do that or what it was for.  I remember thinking it must be bloodwork I don't need to fast for or a urine sample or both.  It seemed weird that the guy who drew my blood had never seen one of these test kits before and had to call someplace to make sure how to enter it into the computer.  When I asked him what the test was for he wasn't sure but thought it had something to do with genetics--which totally baffled me.  Kobrossay, as usual, had left us totally in the dark.

I already had personality differences with Kobrossy.  I told McCune how Kobrossy said (maybe by second visit) he didn't really understand the Midwestern attitudes (stoic/non-reactions or too cheerful...Swedishness?).  

Kobrossy mostly talked and looked at Leah--definitely not me.  He took his mask off every time when we were alone in the room with him.  So when he finally was looking me right in the eye--pulled his chair over in sudden frustration--leaned forward to, quite emphatically with barely disguised anger, tell me in no uncertain terms that I could not have neuropathy--was basically almost shouting in my was without a mask on. 

He did apologize--or make an excuse--before he left the room but I knew things would never be the same between us.  They weren't ever good to begin with but I had trusted his medical knowledge.  Oh, but I also didn't like that he insulted a fellow doctor that day, too, when I tried to tell him what Dr. Regender (GI doctor who is my bladder surgeon's dad) told me when he stopped in while I was in the hospital.  Regender told me that he didn't think I needed a scope down my throat because all my nausea and vomiting was caused by the chemo.  (Which it was.)  Kobrossy interrupted me and said that Regender was wrong and didn't know what he was talking about because he wasn't an oncologist with years of experience with cancer.

Yes, I am sure you can tell I have been quite upset about Kobrossy and how he left us in the dark.  I am so glad to have a doctor who listened to me, looked mostly at me, believed me, and told me the truth.  I told him I may be an optimist, but I am a realistic optimist.  I want to know the truth.  

The truth.  My long-term plan--the goal is "palliative therapy meant to increase the number of good days that she has".  That may be continuing Big I therapy or taking a break from it depending on if I develop limiting side effects.  (That's from notes online after my visit.)

Kobrossy's assumption that the tumors would just vanish--that is very much a best case scenario.  (Not that it can't happen--I did have excellent genetic results for odds of a positive outcome.)

So...I have been absorbing all this since Thursday.  We will know a lot more after I have the CTscan on the 10th.  Makes a huge difference to find out if the tumors have grown, shrunk, or remained the same.



I had no pics even this past week.  But Leah sent me some...and these are the best spirit lifters in my life.  :):)

Apparently the boys made a monster face with tape out of one end of the bunkbeds--LOL!  They are always thinking of something unique!

This was before Christmas.  The boys had shoveled out their igloo/ice house.  No idea if it is buried again but most likely is with several snowstorms since then.

Daddy overseeing some sledding...and looking very Fargonian--LOL! 

Daddy playing the horse to a seven and four year old-LOL!
Once the boys get situated and he moves some toys aside...he can "horse" them about their bedroom.
I love this picture of the boys sleeping and how Ian has Liam's ankle in his hand.
Speaking of sleeping...

Since I didn't have any pictures of my own this week I thought I'd take some pictures of Annie keeping me company while I chat with you.  These were taken in about the span of fifteen minutes fresh from a complete flip from the other side.  This is why cats--who sleep 20 hours a day--do not get bed sores.  They are never in one position long enough--ROFL!

Well, a lot of new information to absorb this past week.  I looked up side effects of immunotherapy/keytruda and there are a lot of them--in many different areas--from guts to lungs to eyeballs to brain.  What's weird is I already have issues in certain areas because of preexisting chronic how would I know there was a change until it was much more severe?  I already have headaches from fibro.  I already get diarrhea from IBS (gift of fibro).  I already have chronic fatigue (another gift from fibro).  I already ache all over from arthritis.  I already have eyesight issues from double macular puckers.  I already am a frequent urinator--for decades.  I already have fibro fog brain...etc, etc.  What's really annoying to me is that a huge part of how I have survived--and survived well, I think--the past couple decades with all these issues is by ignoring them.  By not paying attention--dissociating from all the body pain--accepting it and all the rest as part of my life.  Now I have to pay attention?

Yes, now I have to pay attention.


Focusing attention on my body just makes it feel worse, you know? 

I am not good at all.  I have 20 years of self-trained automatic dissociation to overcome.  I didn't even notice when the neuropathy started!  So, I even asked Leah to help.  If she notices anything to let me know.  Can even be changes in behavior or temperament.  The chances of it being deadly are slim from what I can find online.  But when you have cancer the last thing you want is to die from a cure because you weren't paying attention, you know? 

No matter what, the normal side effects listed are easier on me than chemo.  I'm already familiar with several of them.  Inflammation for one big one--lol!  :)  I think I already have been dealing with sinuses worse than usual and an occasional but consistent cough or throat clearing for weeks--maybe more than a month...or two?  (I only notice when things don't go away after quite a while.)  

So--there you go.  You are suddenly as up to speed as we are.  If I can stick with minor side effects, shrinking tumors (praying), and not having to see Kobrossy--life will be good...very good.  ;)  

Today I am washing clothes.  We have another winter storm watch that could reach blizzard level winds coming later on tonight around 6ish.  Could be an ugly start with sleet and ice because it has warmed up to 20F.  Storm is supposed to keep going till tomorrow afternoon.  I am grateful to be snug in my warm apartment with Annie.  (Cats are always cuddlier when it is cold out--lol!)  I am grateful I have been feeling okay and my neuropathy is slowly getting better or at least shifting randomly.  I have plenty of seed in the pantry for the Critter Cafe with a storm coming.  I feel safe and peaceful.  (When I don't think about Kobrossy--ROFL!)

Have a safe and peaceful week.  Till next time...hugs from Fargo.  :) :)    

Monday, January 24, 2022

January 24, 2022 Monday--11am

 Good morning!
Got a few things done last week--whoohoo!  I am slowly regaining control of my home.  At least the surface areas that have all become dumping grounds along the way since my diagnosis in June.  First I got my kitchen counters back and was able to maintain them at my normal level of clean.  Then it was my kitchen table.  Been able to maintain control of it, too.  Last week it was my desk.

First I had to purge my file cabinet (down on the right hand side) because I had no more room to squeeze any more paperwork down there.  This is the before picture.  These were the stacks that had been growing for the last six months. 
I have a lot of papers to shred.  I had everything from since I moved here in 2015.  I know--I don't need to save every electric bill, etc--LOL!
Leah said she has boxes of papers from back when her mom died that need to be shredded so she'll just add mine to it because she found a company that will shred them for you.  That's marvelous!  I have them packed up and ready to go!  
Don't even have to worry about staples or paper clips!  Nice!  Would have taken me hours and hours.

Leah and her brother, Aaron, made the Costco grocery trip.  First time in I can't remember how long that I was able to bring the cart out to the parking lot for my drop off groceries.  :)  I did laundry and ordered my free at-home covid tests from the government.

Leah came over in the evening.  She changed the batteries in my smoke alarms for me, brought out trash, watered my plants...the things I still have trouble with.  We had a good gab session.  I never know where the topics will end up--LOL!  I told her a story I don't think I've even told Dagan about how senior year some kids planted marijuana seeds in the empty lot right behind the police station.  My boyfriend, Alan, took me over there to see it.  Was a good sized patch that had grown way above my 5' 1" head.  Was hysterically funny to Alan and all his friends who smoked grass that it was growing wildly right behind the police station.  They finally discovered it, cut it down, put it in a big pile and burned it.  Alan told me he and his friends gathered around the empty lot making a big point of sniffing the air while the cops were watching.  

They had been sampling it, of course, over the summer and he said it was really crap grass--LOL!  So none of them cared that they burned it.  In the Fridley paper the police valued it some ridiculous amount of money--hundreds of thousands of dollars--but, in reality, they couldn't give it away.  People would ask--this isn't the stuff from behind the police station, is it?

BTW--I did try grass later on after I graduated high school but at that time I was still quite the odd but clean-cut honor student.  Alan's so-called "druggie" friends called me Sunshine and apologized when they swore.  Were like big brothers to me.

I digress...

Friday--well, all week long...

...was busy on the patio.
But often this is what I actually see.  
I usually keep the blinds partially open.  I don't want the critters to actually get used to me--a human--as a good thing, you know?  For their own safety.  If I keep the blinds partially open like that they can't see me as well when I am getting up and down inside the apartment so I don't scare them away as easily.

Since Friday the nighttime visitors have been coming earlier.
They're a little braver than the birds so I walked very slowly over and twisted the blinds open farther so I could get some pictures.
I even took a video--I'll try to add below.
But I must apologize that I still keep calling them jackrabbits.  I grew up hearing that but they are actually arctic hares.

I'll try to put the video of the hares and partridges below.  If you don't want to hear me gabbing and giggling the whole time feel free to turn the sound off--LOL!

Well, I can't figure out how to embed anymore since Blogger changed things.  I've tried Blogger's direct way and the old way I used to do it--no luck.  So I will just put a link.  Let me know if it works please.

I don't think it worked so I tried a direct link too.  Now it won't let me update.  ???

Anyways, the arctic hares are really huge...
...compared to the cottontail rabbits.  
One cottontail stopped by after the hares were gone.

Why would this countertop make me so happy?
[And--yes--I have an Alexa and a Hey Google--both from McFamily.  I use them both and still wonder if they get jealous when I use the other one--LOL!)

Anyways, I had all kinds of fountain pen supplies for cleaning and filling trays on that counter for some time.  Well, I finally finished FP tray #5!
Now I am finally back to cleaning and refilling as needed as I make my way through the rotation.   Ahhh!
I still have the bedroom, pantry, and studio to reclaim.  Here are the studio "before" pictures.  
Sadly, I have already been in here working a little bit on clearing off this table...
...and this die cut machine table, too, but they still are this messy.  So much for being organized, eh?  LOL!
Pretty obvious I haven't gotten near the little red-legged table.  Quite the dumping ground.
I don't even care if the bookcases and all the rest are organized or not in there.  I just need the three tables cleared off enough so that I can PLAY in here again.  ;)  Leah helped me get most of my gessoes and gel mediums in one box for the first seven Wanderlust classes so that is at least one step closer.

Anyways, my infusion got switched to this Thursday instead of Friday.  Covid has really been bad up here recently so we plan for Leah to just drop me off and pick me up--and we will keep our masks on in the car.  I want to reduce her exposure--for the boys, you know?  We're back to isolation and quarantining when we have exposure, like before.  Not that we got far from that ever.  

The hospitals are near capacity.  Schools don't have enough staff to stay open in places.  We have more cases now than we have had since the beginning of the pandemic.  So, until next time--please stay safe and well!  :)

Monday, January 17, 2022

January 17, 2022 Monday--11:30am

Good morning!

Not a lot to tell you about from this week...and it is so nice to have a basically uneventful week, I tell you.  :)

Well, there were a couple things--but nothing major.  Did have trouble with the garage door.  You may remember my garage was broken into and the management installed a keypad for it.  Well, when the blizzard went through look at the amount of snow that blew in under the garage door.

Yes, there's a drift a ways out from the garage door, too, but that's normal.

Never had snow blowing in under the garage door before.  Leah said that the door is up off the ground a bit and all loose and wiggly at the bottom.  I called maintenance and they just said it was fine.  So today I sent these pictures and asked them to check it again.

Then, Blogger was behaving badly this week.  For me, anyways.  It wouldn't even let me open up my email notices of new posts for a few days.  Been working since the weekend again.  So far I don't notice any issues with writing this post.  Fingers crossed.

Otherwise it was a very quiet week.  Nothing got worse really.  Just stayed about the same...and that is a good thing.  I did get all my Thank You cards sent out and got FP tray #4 all done and ready to go.  Only one more to do.  It's the messiest one to deal with because of pens that have to be dunked in ink bottles and can't be filled with syringes.  Yes, I prefer the clean, less messy, no-ink-on-the-fingers method of FP filling with a syringe--LOL!  I should get to it this week, I hope.  In case you're curious...

Tray #1
Tray #2
Platinum Plaisirs
Tray #3
Pilot Metropolitans
If you look closely above you can see the old highlighters (yellow and pink) that are being used as place-savers in my rotation.  Yes, I am already into tray 3!  I won't be able to procrastinate for much longer.  ;)

Tray #4
Two TWSBI Swipes and my Platinum Prefontes
Yes, I actually ran out of room in my TWSBI tray--LOL!

Tray #5
You can see how most of these really do need a good cleaning and a filling.  They're not as easy to clean, either, but you can take them apart (which I've never done to be honest--because I'm afraid I'll never figure out how to put them together again--lol!).  Despite all the extra work and inky fingers these are my favorite pens to use.  They start up easily even after they have been sitting for weeks (or even months) and they hold a lot of ink--so you don't have to clean them as often anyways.

This may be my final tray to deal with but it will probably take me more than twice as long.  Worth it, though.  ;)

Leah was over Thursday night.  (She noticed the garage door on a trip out there for bird seed.)  We had another snowstorm come through that night, too, I believe.

The Critter Cafe was quite busy all week, as usual.  Got visits from the cottontail while the sun was still out!  :)  
You can tell it was still really cold because the partridge is fluffed up like a basketball with legs.
Here you can tell that it got warmer out.  Was close to freezing... you can see more the true size of the partridges when their feathers are smoothed out more.
Today is also a warmer day-- 31F right now.  You can see next to the planters how far down the snow sank with the warmer weather.  They all come to eat, though.  Not quite as frantically--but with a bit more bickering between the partridges.  Maybe it gets them thinking spring--LOL!  Spring is quite the battleground out there when they are pairing off.  Lots of chasing back and forth then, I tell you.  Coveys are really a winter thing from what I have seen.  And even the coveys do battle all winter for time on the patio--LOL!

I did also get all my regular correspondence letters set up this weekend, too.  They're all ready to go now--envelopes addressed, paper picked out, and each in a padfolio next to my chair.
I have ten set up at the moment so that's why it takes me a while to answer everyone.
But these are all so precious to me.  I would rather take the time to have a leisurely paper chat than ever try to rush to answer back...but that's why it can take me quite a while.  Especially the last many months, of course.  I do so love my snail mail family.  Thanks to every one of you who have written even when I could hardly write back there for a while.  All the pretty, touching cards and letters...have meant the world to me.  Also--each and every comment on the blog or personal email, too.  Wow! Thank you so very much!

Okay--enough emoting for this old swede.

Joke insert:
[Did you hear about the old swede who loved his wife so much he almost told her?!] 

Things are going along well up here.  I am soooo enjoying being able to just be home slowly getting better with no appointments to go to every single week.  I think McFamily is appreciating it, too--LOL! 

Till next time...know that you are appreciated.  Even those of you who just read and never comment...if there's a kind thought my way I believe I can feel it.  Thanks!  Have a really good week!  :)   

Monday, January 10, 2022

January 10, 2022 Monday--12:30pm

 Good afternoon!

Was a good week...not as much energy as last week but ups and downs are to be expected, I guess.

At dusk I caught a picture of the cottontail (or one of them?) who come by to eat up leftovers during the night.  I rarely see the rabbits but they leave the little round evidence of their visits--LOL!
I peeked out in the dark one night and saw a jackrabbit!  I haven't actually seen one for such a long time I wasn't sure they came around this way anymore.  You forget how huge they are--LOL!

Katie came to clean and the blizzard very politely held off until she was leaving in the early evening.  I did manage to sort and put away all the clean underwear, socks, and towels from in the bedroom before she arrived.  

After the blizzard I had snow to the top of my planter boxes.

You could see where the partridges had dug some snow nests on my patio.
Annie wasn't thrilled that the snow comes up so high on the patio door.  Makes it harder for her to watch the Critter Cafe visitors--LOL!
All week long it has been really cold and there are a lot of hungry birds out there.
We had nearly constant company all day long.

I was so tired that I was asleep by 7:30pm and slept till 6am!  Yup--the energy comes and goes...but that's okay.  On the whole I am gradually doing better and better, I think.  :)

Infusion day.  This time we had a morning appointment because no afternoon appointments were available three weeks ago.  They were very busy and running way behind.  Turned out Dr. Ferrari was out due to Covid...and I'm sure others were, too.  I had a lady doctor who I don't think was even an oncologist--filling in.  Amazingly we got out about the time we would have so that was good.

Poor Leah had to listen to my toilet seat story several times--LOL!  I forgot to tell it to you.  Last time after my infusion and vaccine when I slept for two days and then had diarrhea for two days...well, I had such a shock!  Must have been the third day after or so...I went to sit down on the toilet and almost leapt to my feet!  I could suddenly feel the toilet seat--all hard and cold--and thought it was wet or something.  I didn't realize how numb I have been until I could feel the toilet seat!  Wow!

Not sure if it was the Big I infusion, the Covid vaccine dose, or a combination of the two--but it was quite a shock.  Has stayed the same since then, too.  I can feel like half the toilet seat!  Who ever thought that would be a wonderful thing?  LOL!  I've basically been numb, tingly, and mostly painful to the touch from my waist to my ankles--for months.  So this was an exciting new development that I take as a very positive sign that my nerves are regenerating.  :) :)  

And--yes--I am the kind of person who was excited to share the toilet seat news with her clinic caregivers...always have been actually.  Can you imagine what I might be like if I ever get dementia and have no restraint?  LOL!  Might not be that much different when I think about it--ROFL!

We asked if this time they could let them know at the desk that we can book a couple of appointments at once--yes!  If it's not in the computer they can't book ahead, I guess.  So this time we have appointments with Dr. McCune--afternoons!--in 3 weeks and in 6 weeks--tada!  Nice!  That is what we need with Dagan working half days on Fridays.  What a relief.

I did laundry.  Actually got all the underwear, socks, and towels all put away for the first time on the day I did the wash!!  The rest got hung and draped about, as per the current usual.  Hopefully that will change pretty soon.   My OCD side will be very happy when I can get back to my normal way of doing things.  

I made some bean and veggie chicken soup.  Feels like maybe a little energy has been coming back again.  I'm used to the spoon roller coaster ride anyways, so I am good with it.  At first I was disappointed.  Having three days in a row I got a lot done for the first time in forever--and then to have all that energy just drain away--kind of bummed me out.  Getting a taste of normalcy, you know?  But I had a talk with myself--and remembered the card I drew for 2022.  When I stay in the present moment with gratitude I am always okay.  :)  And I have to remember the bigger picture.  I am way way better than I was...and continue to see improvements over time.  Patience.  I am still getting things done this week I wouldn't have even a couple weeks ago.  I just get too excited, you know?  Been such a long time.

Anyways, this morning--what a delight.  One covey of partridges is spending the night on my patio.  Been a couple of years since we've had enough snow for that to happen.  It warms my heart to think they feel safe enough to stay close by. 
Even in the daytime they often settle in close by.
I know it's only because it is too friggin' cold for people to be walking on the sidewalk pathway scaring them away regularly...but I still love it.
I just took this pic--a couple hours later.  They haven't moved far at all.  Basking in the sunlight even if it is only -3F.

Oh, and the 2022 Wanderlust classes began on Friday!  I am actually hopeful that I will be able to participate somewhere along the line this year.  I am excited to see that they are using a new format for 2022.  They are picking different supplies or mediums every seven weeks.  So the first 7 weeks we will have teachers using gel mediums and gesso.  I like the sticking with a theme for a while and seeing how all the different teachers use these products in different ways and with various other supplies.  We'll be doing themes with watercolors, acrylics, etc.  Now, whether I can manage to try doing some art this year or not I know I will be awaiting my Friday email every week and glued to the videos.  :)   

I did finally get my banking done but I never got to FP tray #4 or writing my thank you cards.  They are on my list for this week again.  ;)

I hope everyone is doing well and staying healthy.  They are predicting 33F tomorrow!  First time above freezing in a long time.  I hope it doesn't melt too much of the snow or leave a crusty ice layer over the snow--for the partridges sake.  It should melt some of the ice off the sidewalks, parking lots, and side streets though. 

Till next week--take care and stay safe!  :) :)