Monday, November 29, 2021

November 29, 2021 Monday--2:45pm

Good afternoon. 
I think my plants will survive.  The two philodendrons (actually pothos I discovered many years ago but since I had always known them as philodendrons this old brain has trouble renaming them) are looking good.
The spider plant isn't looking as good.  The mother plant lost a ton of fronds/leaves but it will survive, I think.
I still may have no spoons, but what a great week!  First of all I decided that I want another oncologist.  When Leah and I went on Friday we planned to ask for any other doctor who could see us on Friday afternoons.  Leah reminded me that I don't have to put up with Kobrossy.  True.  So true.  Even if I had to get a part-time one.

Back when we had Dr. Katkov for Dagan there were no other cardiologists at Children's in Minneapolis...and he was our only choice for something like the first 8-10 years of Dagan's life.  As soon as Katkov hired a partner we asked for him instead.

When I was diagnosed with cancer there was only Dr. Kobrossy, another lady oncologist who was only there very part-time and worked at three hospitals, and that was it.  Well, now there was Dr. McCune because they set me up with him for the hospital follow-up...and I found another male oncologist on their website now.  So I planned to ask to switch the doctor and time for my next appointment on the 17th if that was possible.  Fingers crossed!

We went in, got blood drawn for labs, and went to an infusion cubicle.  Did not expect to see Dr. Kobrossy--remember I opted not to see him.  Well, he popped in to haunt me--twice!  Leah said she could see the disgusted look on my face when I laid eyes on him...even with a mask on--LOL!--so I'm sure he could, too.  (People have always told me everything shows on my face--even when I don't think it does--LOL!)  I avoided talking to him or looking at him.  Just seeing him--well, really convinced me I need another oncologist.  Even though he was trying to be so nice, of course.  Anyways, my bloodwork was finally better.  (As I figured it would be once I was finally on the upswing and therefore planned to refuse any other exploratory camera work.)  That was great news as then there was nothing that Kobrossy was following up on with me anymore, either. 

Instead of being there for 5-6 hours it was 2 hours!  Nice.  I got my first immunotherapy infusion and on the way out we talked to one of the ladies at the desk.  They knew that Friday afternoons were much easier for us so they didn't think anything of me asking for another doctor.  Turns out Dr. McCune is part time and there's another Dr. Bianca Ferrari who's part time, too--and they usually trade off being there.  Fantastic.  I have Bianca on the 17th.  I would gladly trade off between them and see two oncologists instead of Kobrossy.  :)  

Kobrossy will find out when he sees his appointment has been cancelled.

Leah came over afterwards to help with some things, as usual lately.  She vacuumed, cleaned some Annie barf spots with the spot cleaner machine, baked some fish for me, and got the dishwasher going.  Now that I am so slowly on the mend and have three weeks off...Leah will start coming over on Thursday nights again for Craft Nites.  And I really want to do some crafts--something creative.  I have missed that so much.

I ordered a couple of Valentine's Day card supplies for the boys.  On the left is a stamp that we would emboss in black and they could color the hearts any way they want to.  On the right is a die set--oops!  Can't even see the pieces.

You can cut out many different colors and then piece them together.  Pinks and reds or rainbow colors or even printed paper pieces.  Will be like them putting together a small puzzle with a glue stick.

And how far have I gotten with Christmas cards?  Not far--LOL!
But that is what I plan to get going on this week.

And how has the immunotherapy gone so far?  I've been running a low temp off and on and have a bad headache, but that's been it so far.  By comparison--that's nothing!!  :) :)  Otherwise, I'm feeling about the same.  Spoonless, but on the mend.  And it is soooo great to know that I don't have to go back for an infusion until the 17th AND don't have to see Kobrossy.  I do have a hospital follow-up appointment with the GI lady on the 7th (unnecessary in my opinion).  Oh, and my legs have better days (or parts of days) here and there, so hopefully that will mend itself, also.  Didn't use a wheelchair last Friday--but still had Leah pick me up at the door.  That's progress.  I just need time to heal.  Going the right direction--no matter how slowly.  Life is good.  :)

I'm actually up at the kitchen table typing and not typing from my chair.  Got the table mostly cleared off for the first time in months.  Annie wanted her chair next to me right away.
I have a long to-do list for when I feel better...but this week I will be happy if I can get started on Christmas cards...and, hopefully, the laundry.  (No--I never got the clothes put away from last time a couple weeks ago--just been grabbing them off of piles and hangers hooked on dresser pulls and door knobs--LOL!)  That would be amazing if I got the laundry done--even if I don't get anything put away again--who cares!

I haven't been up to watching anything I have to pay close attention to so I re-watched Vera and am now re-watching Shetland and eventually will finish Monk.  Still have a harder time focusing...but pretty soon maybe I can tackle a brand new show.

This will be so nice--for all of us.  Once every three weeks feels like a vacation!  I have disrupted Dagan and Leah's lives so much these past few months...and mine ground quickly to a complete halt.  Such peace to just be left alone to rest and heal.  Ahhhh!  And as soon as I am feeling up to it (and have quarantined) I can have McFamily over for a visit or even go over there for a visit.  Been such a long time.  I'm not up to a Gramma Day for a while, but now it is something I can imagine in the future again.  :)  Life is good.

Well, that's it from here for this week.  Thanks for all your prayers and well wishes.  I can always feel that positive energy from you all.  

Happy thoughts!!  :) :)      

Monday, November 22, 2021

November 22, 2021 Monday--2:15pm

Good afternoon!

The good news highlights are that I haven't thrown up since last Tuesday or Wednesday.  I can drink and eat more at a time and don't feel like I am hungry all the time (which started as soon as I could keep food down--lol!).  I didn't even need a hydration infusion on Friday.  

Other than appointment days I was doing nothing.  Pajama days.  Eating, drinking, peeing, pooping, and sleeping.  You truly realize how wonderful it is to be able to eat and drink when you couldn't for five weeks...and to be pooping when you didn't for at least three weeks (nothing TO poop).  Things still don't taste quite the same and I can't eat some things I loved (yet) because of the oil or grease content (have to be careful even with my beloved cheese).  But by this last Wednesday I was able to drink water--really gulp and not just gingerly sip.  So Thursday I made some coffee to see if I could drink my fresh ground, pour over coffee again!!  Whoohoo!!  YES!!

The simple joys of life.  :)

I am so exhausted by all these weeks and weeks of tests and labs and surgeries and appointments...I reached a wall.  Been functioning on minus spoons for some time.  So this was a good week on that front...because I know I will be getting a break.    

Thursday

Was the day of my cystoscopy procedure.  (I couldn't remember the proper name of it but it happens to be on a sheet of paper piled next to me on the table--lol!)  I haven't trusted my legs for walking very far so Leah took me in a wheelchair to be on the safe side.  Was feeling so numb from the waist to my calves that when they prepped me for the procedure and had me waiting in the weird frog-leg position (which hurt because of the arthritis in my hips and knees and can only spread them so far so they shook and shook) until Dr. Regender arrived I had no clue that I was actually covered with a paper blanket.  Thought I was just lying there spread eagle (and a male nurse walked through the room) until the doctor arrived when a nurse told me she was going to uncover me now.  That's how numb my legs are.

It was uncomfortable and I could feel everywhere she shifted the camera (that could be because of my fibro as I have had doctors tell me I hurt inside and out)...but it was really quick!  Like five minutes or so.  Whew!

The wonderful news is that it was basically just what I thought it was--a scar of some kind from the surgery.  It was in the same place as where she took off the tumor and was just raised up a bit.  She said she would double-check with her partner and even called me later to tell me they both agreed that nothing needs to be done.  They will keep an eye on it with scans here and there--but no surgery needed.  Wonderful news!

Leah came in afterwards and watered my poor inside plants for me.  I am too short to do it without climbing up a stool and with my rubbery weird legs I didn't think I should be doing that (Leah didn't, either).  I have been a bad plant mom because they were really wilting.  I hope they survive my negligence. 

Friday

Off to the clinic.  Lab work drawn.  I had gained back 9 lbs of the 26 I had lost.  The place was really busy.  Of course we were there earlier in the day than usual because we were seeing Dr. Kobrossy after the lab and before any infusion.  I was in a wheelchair.  Leah and I waited a long time in the room but we saw they seemed really swamped with patients that morning and were having a good chat.  

Dr K came in apologizing for being so late.  Things went downhill fast.  Let's just say that when I started to tell him about the neuropathy in my legs and how I had been ignoring it for over a month...he basically told me it was impossible that I got that because of the chemotherapy.  People who get neuropathy from chemotherapy have been in chemo for a long, long time--sometimes years.  The conversation (or mostly lectures from him) jumped about.  

He took off his mask and got up close and personal--leaning in--eyeball to eyeball.  Usually he spends half his time talking to Leah (because he thinks she understands so much better than I do) but he barely glanced at her.  It was like he was going to force me to understand...something?...but he couldn't get through to me.  

At one point he told me he really cared about me.  Told me it was okay to break down once in a while (like he wanted me to cry right there so he could comfort me).  I just stared at him.  He'd just been talking down to me!

He told me the story (second time I've heard this one) about this woman he'd treated and she hadn't seen him for years--but she saw him from across the street and she threw up.  I remember at one point after the vomiting woman story I leaned in and eyeballed him hard and said--so you think this is all in my head?!  

I remember I tried to tell him what Dr. Regender (gut doctor) told me in the hospital and he cut me off and said (vehemently) Regender was wrong and he doesn't know because Regender's not an oncologist--unlike him with all his years of experience.  We will have to just agree to disagree, I said.

  I know this is a jumbled mess even trying to tell the highlights of this strange confrontation...but that is how arguments go, isn't it?  I have had some really crappy doctors (male and female) in my lifetime but this was the most aggressive, condescending one yet.  

Finally I was done trying to talk with him.  Inner wall went up.  He'd cut me off when I did try to say anything and none of this made much sense.  If he believed I had a rare allergic reaction to chemo that caused certain issues--then why would it be impossible for me to also have neuropathy from it?  And where did the neuropathy come from then?  Does he really believe any of what has happened to me?  Or does he think I'm some bizarre kind of hypochondriac?  

I sat back in the wheelchair and wouldn't look at him.  He actually "apologized" after a little bit...well, he explained why he snapped at me.  Said he'd had a patient pass out and claimed that he'd worried about me waiting for him while they were dealing with that other patient.  Sounded lame to me, but it is a rarity for an egotistical specialist to apologize for anything, so I guess he gets credit for that.  

Let's just say I was hoping nothing like this would happen.  But from day one Dr. Kobrossy had reminded me quite a bit of Dagan's cardiologist, Dr. Katkov, when he was a baby and growing up.  They both have this need to be the god-like specialist, if you know what I mean.  They are used to being adored and almost fawned over.  (Not that I have seen Kobrossy with other patients or family members, to be honest, so I gave him the benefit of the doubt.)  But it was something I definitely felt off of him right away.  

I fully admit that I am confusing to people.  They take my positive attitude and sense of humor as that I am not fully understanding the seriousness of the situation.  I am fully and completely aware of the life and deathness of situations.  Dr. Kobrossy made a comment toward Leah early on when we first met him about how he doesn't understand the nature of the people from the upper Midwest here.  (I forget where he was from--Pakistan?)  I knew he didn't really understand or "get" me and I was okay with him mostly talking to Leah.  I can't hear out of one ear hardly so that's fine.  

I am used to people being a bit baffled by me in various situations over my 70 years.  He can think what he wants about me.  I am just wanting someone who knows the science and medical options, you know?  That's how I felt about Dagan's cardiologist back then, too.  Unless they mess with what I know to be true...I can sit back and be polite.  But mess with my son and I will fight you.  Mess with my health and I will fight you. 

I don't think Dr. Kobrossy has probably dealt with many cancer patients who have been in as bad of shape as I was to begin with--for a couple of decades--before ever getting cancer.  I fool them that way, too.  I don't look as sick and easily incapacitated as I am.  Even though I tell them, many health professionals don't believe you.  And then I had such an extreme reaction to the chemo.  How was I to know what's normal and what isn't?  Didn't totally surprise me I might have a rough time of it on chemo after the bad reaction I had to the covid vaccine shots for three months or more.  (Thought I was going to end up a long hauler from the vaccine for a while there--lol!)   

Anyways, I wasn't sure if I should bother to talk about the personality clash or head butting incident between myself and Dr. Kobrossy or not...but it happened and will be likely important in our future relationship.  For some reason my having neuropathy really triggered some button for him and he was quite angry about that.  He was obviously having a bad day.  He did try to apologize.  I will still keep him as my oncologist.  I will just be quieter and less talkative and a bit more distant.  (I know this from my years with Dr. Katkov with Dagan.)  There are so many other people you deal with all the time who are so nice and sometimes even really do understand you better (because they see you more often and for longer or they just have more people smarts--lol!).  I do think he knows what he is familiar with.  And now when I start immunotherapy I will only see him every three weeks--tops.  Hopefully less--lol!  

On Friday I didn't need to have an infusion.  We set up my first immunotherapy session for this coming Friday and Kobrossy gave me the option of seeing him or not that day--I chose not.  So I won't see him for a month.  It's much easier for us to not see him because he wants morning appointments and when we don't see him we can come in the afternoon.  Dagan works half days on Fridays so that works out perfectly.  Not so perfect to include Kobrossy in the mix.  But he's watching my red blood cell count because it has gradually been going down.  (Which I read can also be caused by chemo and not necessarily bleeding somewhere in the body...but it could be that, of course.)

Kobrossy doesn't like me looking things up online--at all.  Too bad.  (Katkov didn't want me going to the medical library to look things up, either, back long before the internet--lol!)  I always want to know as much as I can.  Part of my worse case scenario routine so I can put it on the back burner, so to speak.  And so I am not surprised--lol!

I was always asking the nurses in the neo-natal unit questions.  They got used to me and my strange ways--lol!  In fact they would leave me in charge--sitting between Dagan's table and the premie in the next warming bed for short periods of time.  If little Janie's alarm went off I had to slap her legs lightly to get her heart to start up again.  They trusted me.  They also knew that when I raised my hand up high and waved to them that they needed to come over to take over with Dagan because I was having a rare moment where I needed to go to the nearby bathroom and pull myself together.  I didn't allow anyone to be falling apart when we were with Dagan--not even me.  Babies sense so much around them.  One of the nurses even gave me an old stethoscope before I took Dagan home and showed me how to use it.  Katkov would have had a fit--ROFL!  

So anyways-- a month away from Kobrossy will be good for both of us.  I knew I have aggravated other doctors over the years and they might have felt as angry as Kobrossy but none of them showed it so much...and for so long--lol!  Leaning in eyeball to eyeball trying to make me almost be something I am not.  

Once in an appointment with Dr. Katkov when he was talking about doing a heart cath to see how Dagan's heart had changed over almost three years...said that it had to be better or he wouldn't be doing so amazingly well.  I said that would be nice, if life was fair...but I was just glad he was doing so much better than anyone expected regardless.  Katkov got visibly angry with me--shouting that his heart HAD to be better and maybe they could even build a wall between the bottom chambers.  (It was worse and they couldn't.)   

Another time I made the remark of how grateful I was for both medicine and faith that had kept Dagan going for years (I think he was about five at the time) and Katkov slammed his fist down on the table and said "it was the surgery that saved his life!"  Really startled me...but I just raised my eyebrows and observed him.  I can create festering anger sometimes in people.  

Yes, doctors can be an interesting lot.  Maybe I can set some of them off because they are used to people fitting into certain boxes.  Physically.  Emotionally.  In most ways--I'm not what they expect, you know?  

You'd likely never know it when you first meet me (depending on where we meet--lol!)--but I guess I kind of live outside the box.  Always have.  I am not "normal"--ROFL!

Well--in the meantime--I am just plain recovering.  Barely functional--just on R&R.  Feels great.  I can eat and drink, anyways.  Ahhh!  Brain is feeling a bit less foggy.  (But as you can tell with the blog jumping all around--still not exactly clear headed--lol!)  Appreciating the days free of appointments.  Sleeping whenever around the clock.  About ready to be able to write some letters again pretty soon.  In fact--time to start on Christmas cards!    

No appointments until Friday afternoon.  And the immunotherapy is a shorter infusion--like 30 minutes!!  Whoohoo!!  Can you tell how exhausted I have been?  Not even any pictures his week.  I expect this next week will be better.  :)

I am glad you all accept me for the abnormal person I am.  ;)  Till next week.  Bless you!!


Monday, November 15, 2021

Novembr 15, 2021 Monday--2pm

Good afternoon!
Well, it took me a few days to wash all that laundry and I still haven't put away one single thing.  Everything was clean and that is what mattered.

We had snow...
...a few times.
The Critter Cafe has been very busy.
As soon as the snow flies the birds know where to come for a meal.  ;)
I look forward to seeing the partridges all winter.
****
Well, was another exhausting week...but am eating and drinking again!  Gained four pounds!  Never thought I'd be so happy to hear I had gained weight--LOL!

Monday

Had an appointment with Dr. McCune, an oncologist I hadn't met yet.  Got a Friday hydration infusion set up.  As far as the CTScan went my cancer tumors had shrunk a little but they also saw something in my bladder.  So he let my surgeon (Dr. Regender) know and left it up to her to decide what to do about it.

Tuesday

I decided to focus on eating the soft, creamy stuff that coats my stomach (like soups and mashed potatoes that worked well in the hospital).  For some reason baked fish went down well in the hospital, too.  My guts have been super touchy about grease and fat.  (Maybe the gallstones?)  Leah went to Costco and picked me up some fish to bake and some Keto bread.  Later on Dagan picked up a Cashwise order for me with some canned soups and potatoes.  Thrilled to be able to eat and keep things down.  Still have to be careful what I eat and how much at a time, but I'm able to eat and drink!

Wednesday

Any day I don't have an appointment I am spending it sleeping, eating, resting...just a zombie woman.  

I can't remember which day but I heard from Dr. Regender that she does want to take a look inside my bladder.  I am not looking forward to this at all.  Will be awake for this procedure.  Awk!  Thursday the 18th.

Thursday

I had a hospital follow-up visit with my regular doctor's.  Dr. Kessler was booked up so I saw the nurse practitioner.  That's when I found out I had gained 4 lbs!  So nice to give her a positive report that things seem to have turned around finally.  

Leah and the boys waited in the car for the short dr visit.  I wrote letters back to the boys for them to read in the car.  Just nice to see them!

Friday

I had labwork and a hydration infusion.  The weird thing that happened...well, my legs have been feeling really strange for weeks, actually.  Kind of tingly and numb-ish.  Why I needed a wheelchair the week before.  I thought I was doing okay but when they called my name I couldn't get out of the chair!  It was like I had no feeling in my legs and no strength at all.  Leah and the nurse had to pull me up.  

I couldn't ignore the tingly weirdness anymore.  Leah mentioned neuropathy.  I googled it and right away several cancer sights came up.  Peripheral neuropathy is another side effect people can get from chemo.  What next, eh?  Now I will have to tell Dr. Kobrossy about that when I see him this Friday.

Anyways, Leah came over after the clinic.  She made a trip to Cashwise to stock up on soups and potatoes since they have been working well.  (We didn't want to buy up a bunch if I was going to barf them up.)  I am temporarily bending the Keto diet.  Whatever works.

We also had a leaky trash bag mess that Dagan came over later after the boys went to bed and cleaned that up for me.  Would have likely made Leah barf.

Saturday and Sunday

Hungry, sleeping a lot, zombie woman.

That was my week,

Now that we have to see what Dr. Regender finds in my bladder on Thursday...immunotherapy has been postponed for another week.  I will go in for labs and possibly hydration this Friday...and a check-in with Kobrossy.

Oh, and I forgot to tell you what another Dr. Regender (my surgeon's father who is a gut doctor) told me in a hospital visit.  Made the most sense of anything I have heard.  He said all of the issues I was having were a direct result of the chemo.  Chemo attacks fast multiplying cells and there are fast multipling cells all up and down the GI tract.  My guts had been attacked.  So, I am taking probiotics and eating yogurt, too.

BIG NEWS!!

The big exciting news I can finally tell you--
Dagan and Leah are having another baby!!
Leah's due the beginning of June.

They had been kind of leaving it up to fate...but, being as Liam just turned four, had thought it wasn't going to happen.  Surprise!  I pray all goes well and we're looking forward to an addition to the family.  The boys are excited!  We're all excited!

On that happy note...till next week...:) :) :)

Sunday, November 07, 2021

November 7, 2021 Sunday--2:30pm

Good afternoon!
I decided to post a day early since I have a doctor's appointment tomorrow.  Was an eventful week...but first...I forgot to show you how McFamily had arranged the yard for the trick or treaters.  A skeleton to greet them...
...all the pumpkins...
...and glow lights strung for the plucking.
Quite a few people are doing the "self-service" type of dispersal during covid.
A good idea but a lot less personal, of course.

My week...my week.

Monday
I did get scheduled for an hydration infusion on Tuesday at 1pm.

Tuesday
I was so weak that I actually had trouble standing waiting while the lady called to the infusion center to ask if it was okay if I came in with a cough and sore throat (probably from all the barfing).  I had to go sit down and the lady brought me a wheelchair.  Yup--used a wheelchair to get around that day.  Not exactly getting better or stronger.

Used the Lidocaine prescription that day and the needle hurt a lot less...so that was nice to find out.  

Dr. Kobrossy wanted me to see the GI/gut lady ASAP so I was set up with an appointment for Wednesday at 2:30pm.

Wednesday
The GI doctor was really nice, but she wanted me admitted to the hospital--right away.  She called Kobrossy and they agreed.  I was just wheeled across the building to the hospital side and admitted for dehydration and the vomiting.  The gut doctor was wanting a possible examination of my esophagus to see if it was inflamed or damaged from the month of vomiting.  But first they wanted that CTScan I had to cancel because that would show some of the throuat issues and Kobrossy wanted to know the size of the cancer tumors in my liver for a baseline for the immunotherapy.  

I was continually pumped full of saline and anti-nausea medication. 
 
Door to the room covered by curtain and my bathroom.

Leah went to my place to feed Annie and bring me my laptop and a few things.
The blue round plastic thing is a barf bag...my constatn companion--lol!
My biggest accomplishment was eating dinner that night.  Fish, meatballs...
...and wild rice soup.
I thought I'd try the french vanilla cappuccino but after having nothing sweet really for a couple of years--OMG!  I couldn't even drink it. Like syrup! 
But I finished the soup...
...and all but one meatball.
Was really pretty good--even though things still don't taste quite right.  (I took the photos to show Dagan and Leah I had actually eaten more than I had in a month!)

I have a terrible time sleeping in hospitals.  I was so tired, though, that I did sleep for a few hours early in the evening but then I was up till almost dawn.  Slept again for a couple of hours.  I was on no food or drink from midnight on because they didn't know if I was going to have that endoscopy of my throat and they had scheduled me for a CTScan first. 

Thursday
Since I was being worked in for the CTScan I was told it could be afternoon before mine could be done.  Empty stomach not good for my nausea, of course.  *sigh*  But they came in really early and asked if I wanted to go right now--YES!  The girl wheeling me down said she had never seen someone go down that early--must have been like 7am?  Was really quick and easy.  Back to my room to await results to find out if I could drink or have to go through another procedure.

Leah came later in the morning.  Then she left and Dagan came by in the afternoon for a couple hours.  (Different role for Dagan to be visiting me in the hospital.)  His wound is healing really nicely!!  So amazing!  

Waited for hours.  Finally they said--no endoscopy!  Hurray!  I was so thirsty.  I ate lunch but couldn't eat nearly as much as I had the night before.  Got too nauseous from all those hours on an empty stomach.  BUT--I kept lunch down.  Had only thrown up once since I got into the hospital.  If I kept down some dinner I could go home.  They wanted me to go home since there was nothing more they could do and I had been switched over to being classified as being there for observation only.  (I was very concerned as to what would be covered by Medicare/Medicaid also.)  

I managed to eat a small amount for an early dinner and kept it down. Leah came back for my discharge and she had stopped at the pharmacy on her way to pick me up.  All I wanted was to get into my comfy chair!  Could hardly keep my eyes open.  By the time I was leaving the hospital I was finally back to peeing like normal again, thank goodness!  

I don't know what I would do without Dagan and Leah.  

And I do miss the boys...who sent me letters while I was in the hospital.  Liam (on the right) insisted on writing everything himself--LOL!
Can click on to enlarge.
Since I have been home I have been sleeping a lot, managing to keep a little food down and drinking as much water as I can manage.  I am still throwing up maybe once or twice a day--but not after I eat.  Usually when I wake up...which I still think is due to a night of sinus crud running down the back of my throat, to be honest.  So, an improvement.

Since yesterday I have been tackling a month's worth of laundry--little by little.  Nothing has even be put away yet, but I am halfway done cleaning them, anyways.  Clothing and towels are layered in stacks, hanging from doorknobs and dresser knobs--draped all over--LOL!  I run out of steam--LOL!  But at least I have a tiny bit of steam.  That's an improvement, too.  

This coming week I have follow-up hospital visits on Monday and Thursday.  I don't see the usual appointment for Friday for Kobrossy/infusion so I sent a message through My Chart asking about that.  I would imagine I have a Friday visit, too.  Too many appointments--awk!  

But I think I am doing better...finally.  On the mend...finally.  Turned the corner...finally.  I really do.  Even though I am notorious for always thinking I am doing better than I am...I do think maybe things have finally changed for the better.  I am hopeful that pretty soon I can start immunotherapy.  :)

Meanwhile--the weather has cooled considerably.  The partridges are flocking up.  They're here right now chowing down.
So happy to see them forming their coveys for the winter.

Anyways, there's snail movement over here again.  Less barfing.  More food and water consumption.  Lots of sleeping going on.  I'll know more after the dr visits this week.  Haven't gotten the results from the CTScan from oncology yet.  Just have been glad to be home with Miss Annie for a few days.  But tomorrow afternoon it is off to another new doctor.  Can't remember--I think it is the oncology follow-up?  Whatever.  I just go where I am told--LOL!

So, an early blog this week.  Thanks to all of you for your kind wishes and support.  I keep saying it but it is the truth--you are the best!  Till next week...

Monday, November 01, 2021

November 1, 2021 Monday--2pm

Good afternoon.
I have very little to tell you about my week.  Leah and I went on Friday to the clinic and I just had a hydration infusion again.  I spent the week sleeping, barfing, and being a chair potato.  Less barfing, though, than last week--so that's good.  I never even worked on letters.  Have developed a sore throat and cough now...so just taking it easy.

Dagan got his new pacemaker on Monday down in Minneapolis.  They are very concerned about the "pacemaker pocket" being able to heal properly anymore.  He's had that pocket opened and closed so many times since he was 12 years old that it didn't even bleed when they cut him open and he has no pain so the nerves are basically dead, too.  They stitched and stitched him up and put that superglue stuff in there, too--wrapped him with an ace bandage around his chest and we're all crossing our fingers it will heal up and stay closed.  He has to be really careful what he does and how he moves fr the next few weeks.  Will have checkups with his local doctor up here to see how it is healing.  One of those crazy problems you wouldn't have if you didn't live so much longer then they ever thought possible--LOL!  

He'll be 47 tomorrow!!!!  :) :)

Leah sent some pictures.  She and the boys stop often at various parks while the weather is still permittng.  Liam riding a turtle.
I had to really laugh when I saw this one of Ian going down a slide.  He has that baby-fine hair like Gramma that can turn electric and stick straight out from your head--LOL!
In this one Liam fell asleep like that with his butt in the air, as kids are wont to do.  

Liam seemed quite excited about their garden haul.
Pumpkins and watermelons.
The boys working on some decorations for Halloween.  (I do miss them so.)
The carved pumpkins had those cool changing colored lights inside.
This year the boys just did a Halloween candy hunt again.
Kind of like an Easter egg hunt around the house.
They got packages of Keto candies and goodies.
I hear rumors that they are saving some to send to Gramma.  ;)

When we left the clinic on Friday we thought there had been an appointment set up for another hydration infusion for Tuesday afternoon but when I checked online this weekend--nothing.  So, we're tryng to get ahold of them today to see if we can go in tomorrow or even Wednesday afternoon for an extra hydration appointment.  They are either really busy or understaffed.  Can't seem to connect.  Waiting for a call back. 

Anyways, that's the plan (or was) for this week.  Two hydration infusions and see how I am doing.  So far--slowly getting better on the barfing end of things but now sound like a frog and coughing.  That's easier to deal with, though.  :)

Still very, very tired.  Kind of awake a few hours, sleep a few hours--around the clock.  Not very functional...just working on healing and feeling better.  :)  Till next week, my friends.  You are the best!!!

You've probably heard this quote before but I do love it and it is so perfect for fall:

As I walked down the avenue, the late afternoon sun was turning the lovely and dying sycamore leaves into fragments of brilliant stained glass, and I said to myself, “This alone is worth the price of admission to our broken and glorious world.”

Linda Larsson

Tuesday, October 26, 2021

October 26, 2021 Tuesday--11am

 Good morning.

Didn't manage to blog yesterday.  Was much more of an effort just to shower and throw a lounger and robe on than I had expected.  I had Katie coming to clean and never even got dressed so that tells you how I've been feeling in a nutshell.  After she left I fell asleep for several hours and just never could work up to doing the blog.  This morning I am starting with good intentions.  Hello!

The main issue...can't stop throwing up and dry heaving.  Even wakes me up while I am sleeping.  The new once a day pill doesn't seem to be doing much of anything.  I had to cancel my CT Scan for tomorrow.  Contacted Dr. Kobrossy and he refered me to a GI specialist yesterday...so I should be getting a call from them soon to set up an appointment.  Not sure what is going on because Kobrossy says all the chemo should be out of my system by now.

I told him that the chemo seems to have set off all my chronic issues...like the covid vaccine did.  My chronic fatigue seems to be magnified--hasn't been this bad for years.  Maybe the chemo has also drug up an older issue I haven't had to deal with for maybe fifteen years now.  When I got the hand/arm injury on the job in the 90s and they gave me high doses of Ibuprofen for months it seemed to eat my guts out.  I had acid reflux issues really badly for years afterwards and have had trouble taking certain medications since then.  Finally had subsided...maybe12-15 years ago, I'd say.  Only rare flare ups.  I did throw up on occasion back then and would get nauseous...so maybe the chemo set that off, too?  Anyways, that's my theory.

Well, let's see...going back through the week.

Tuesday I managed to lurk in another monthly Kaila Givehand bookbinding workshop.  Stayed awake for the whole thing.

Thursday Leah came by in the evening.  She cut back the planters for me, brought out trash and some stuff to the garage.

Friday was the clinic.  I was carryng my little puke container again.  This time the girl used a larger needle and my port worked right away.  Saw Kobrossy after the labwork came back.  He seemed baffled by my still being so nauseous because all the chemo should be gone from my system.  Gave me a once a day antacid pill to take in the morning, said I should get set up for a CT Scan (Wednedsday--that I just had to cancel), and he'd see me Friday and we'd probably start immunotherapy.  I asked for more of the anti-nausea medication I had gotten in the IV.  He also gave me potassium and magnesium.  Leah and I picked up meds at the drive-through pharmacy on the way home.  The pharmacist also suppested a prescription Pepcid I could take in the evenings if I still had trouble.  (His wife just went through chemo.)

Despite the IV medication, I was barfing by evening.  :(  Not even able to drink water like crazy for a couple of days like last week.

Monday Katie came to clean.  All the rest of the time has been spent sleeping and barfing and watching shows, really.  

So, waiting to hear from the GI department about an appointment.  Supposed to ge back to the clinic on Friday.  Can't imagine starting immunotherapy feeling like this.

Oh, and for the heck of it I asked Dr. Kobrossy for the prescription Pepcid, too, and he phoned that in.  What the heck.  I'll try anything.

Meanwhile, I still have some beautiful sunflowers on the table.
It was nice to get out last Friday on a sunny fall day.  Leaves are changing.  Funny how some are changed and some are green.

Not sure why--took some pics at a semaphore while we waited for the light to change.

A little bit of what south Fargo looks like.

Oh, and this is the first year that the trees across the way from me didn't turn from right to left for some reason.
The planter boxes are all trimmed back, thanks to Leah.  The partridges are starting to gather together in small groups.
The sparrows are flocking up.  That time of year.
We have a wind warning today and it is gusting enthusiastically against the building.  Well, I managed to get something down in the blog for this week.  May have jumped around a bit but it's done.  Better late than never.  Thanks for all your kindness and good wishes and cards and letters.  I will write back when I am able.  Means so much to me.  Hopefully I will get back to you on Monday next week so I don't worry anyone.  Sorry.  
With gratitude.  *love and hugs*  Till next week.

Monday, October 18, 2021

October 18, 2021 Monday--8:15am

Good Morning.

Once again, it was a really rough week.  Let's take it day by day,..things will end up okay--just so you know.

Monday

I did message my surgeon about the gelly-like issue from my bladder.  She ordered a urine sample.

I messaged Dr. Kobrossy:

I have been totally miserable.  Had diarrhea without any warning at the eye doctor's after my first chemo.  Luckily made it into a single bathroom I could lock.  Was all over the toilet and floor and my worst nightmare.

After the second one last Friday I had terrible stomach cramps and started leaking a burning diarrhea for a few hours.  At least I made it home that time.  Had hardly eaten anything for days so it was just a watery leaking that felt like acid and burned my butt till it bled.

Last Friday I also had a gelly-like discharge from my bladder for a few hours, too.  (I just messaged my surgeon about that.)

I have been constantly nauseous, dizzy, have gut pain, can barely eat or drink, exhausted, falling asleep all the time, ache all over, often feel like I am running a temp but I'm not...generally miserable.  The new anti-nausea medication helps to a degree with the throat and acid reflux, anyways.

Is this normal?  I am at the point where I am afraid to come back Friday.  I'm barely functional.  Please advise.

What I got was that I should come and get the bloodwork on Friday and Dr. Kobrossy would meet with me briefly afterwards.  Then it would be decided about whether I had my chemo treatment that day.

Tuesday

That feeling like I had to throw up all the time--well, after the second chemo session it came to fruition.   I was throwing up regularly.  Or should I say mostly dry-heaving because I couldn't keep anything down--even water.  I was sleeping at night plus taking 2-3 naps a day of 2-4 hours...if you can call them naps.  I just couldn't keep my eyes open and would doze off.

My huge task of the day was to just shower after four days.  Had lost 18 lbs since maybe a month ago.  I don't keep track.

I had a video call with Dagan and Leah.  The very idea of another treatment made me cry.  I needed a break.  They totally agreed and were behind me if I wanted to refuse treatment on Friday.

Wednesday

Leah made a trip down to Minneapolis to pick up things at IKEA!  I was getting a new kitchen table (expandable and only $149.00) and some new towels.  She had a nice long visit with her baby sister and her family, too.  Quite a trip--like four hours each way.  She got home about 1:30am.

Me.  I was home sleeping and dry heaving.

Thursday

Leah came over that night and helped me with a few things.  I'd been basically pretty non-funtional since chemo started and it was getting worse.  Sometimes could barely keep my eyes open--with company!  That is not me.  I had managed to force myself to eat something...but barfed it all up.  Was getting a bit worried I had been starting to barf up my blood pressure pill...and I was now barfing up the anti-nausea pill.

Decided that I was not having treatment tomorrow.  Dagan and Leah TOTALLY agreed and supported me.  Leah was coming with me and we were kind of prepared for battle.

Friday

Woke up from a dead sleep at 1:45am dry-heaving and now I had a rash from midsection to mid thigh.  Was all getting soooo ridiculously awful.  Dry-heaving again at noon--probably lost BP pill again.  Had lost 21 lbs.  Another three pounds in three days.

Leah and I made it to the infusion lab and guess what?  This time they couldn't get my port to work at all.  Tried for 35 minutes.  (Later I thought--was probably too dehydrated!)  I told him that I wasn't planning on having treatment, anyways.  They brought a guy up from the regular lab to take the blood sample out of my arm.  Then we went to wait for Dr. Kobrossy...and were geared up to fight him if he woudn't give me a break from chemo.

But he came in apologizing for how awful I have been feeling and told me no more chemo.  I am so spacy that I thought he meant a break from chemo for a couple of weeks or something--and even that made me cry.  But--NO MORE CHEMO!!  

I had an unusual reaction, he said.  (Looked online later--looks like probably an allergic reaction to chemo--down to the weird rash.)  He did seem genuinely upset that I was in such misery...even had to come in carrying a small container to puke in everywhere I went.  He wants me to heal up and feel better.  Then we will do immunotherapy.  In a weird way this was like a blessing in disguise.  I don't have to go through months of chemo before I qualify for immunotherapy.

Anyways, he wanted me to get a couple of kinds of IV anti-nausea drugs--one faster acting and one longer lasting.  So they needed to open up my port.  Put some expensive stuff in there that had to sit for 30 minutes and that opened it up so I could do the drips.  The rest of the day was the first time I had not been nauseous for two weeks.  Was able to eat a little bit--but mostly DRINK WATER!!!

Dr. Kobrossy even came to check on me a couple of times while I was getting the infusions.  He even gave us his private home number in case I got worse over the weekend.  Told me to go to ER and let him know if I did.  He kept saying how bad he felt I had to go through all of this.  Nice to have a doctor who shows he cares.

By Saturday I got back the stomach ickies--but not enough to throw up, at least.  And I don't tolerate food that well but I can tolerate water and I am drinking water like crazy.  Water is life!  I can almost feel it bringing me back to life.  

I also had more blood drawn that day to see if this was effecting my kidneys or liver or whatever.  I can't remember.  Leah would know.

I noticed at the clinic that I was also short of breath.  I thought it was from wearing a mask and feeling so weak, but I have had that since, too.  It's going to take a while for me to get close to back to my old cruddy normal, I think.  I am so weak I can't stand up for very long.  Still tired and dozing off, light-headed, some nausea...but the rash is getting better.

I go back on Friday for bloodwork and a visit with Dr. Kobrossy--to discuss immunotherapy, I believe.  All that's in my brain is no chemo.  :)

Okay--you didn't think I would have a blog without pictures, did you?  LOL!

When Leah brought me home Friday there was a flower box!!  From Karl!! 


Individually netted sunflowers!
Leah took care of releasing them from their little bags and setting them free for me.
They seemed immediately happy!
Started to unfurl in a few hours!
These cheery beauties seemed very celebratory!  Perfect timing!  Thank you so very much, Karl.  I have the best blogger friends in the world.
I took lots of photos because I would love to try to draw or paint sunflowers one day.  And I have photos of the roses, too, for that reason.  They are fading now...but a few are valiantly still blooming.
They have scented my apartment so sweetly, Janie.  

Saturday

I hadn't gotten any further in making room to clear out the curio cabinet than what I showed you last week from a couple hours of steroid push.  They were bringing the new table Sunday so I worked as much as I could manage on Saturday and Sunday before they arrived to do a few things.  

All I managed to empty from the curio cabinet were the two little drawers up front.
My bedroom is chaos.
I did manage to clear off the kitchen table.  Time to say goodbye.
I've had this oak pedestal table for 23 years.  The base legs had each gotten huge split cracks in them...
...and Leah strapped them tightly together...must have been like ten years ago or so.
Anyways, that was all I could manage and that took me all day Saturday and Sunday morning.

Sunday

McFamily arrived.  Leah set the boys up on the studio floor with some educational games they love to play on their phones.
But before they got settled in with that they came out to help move all Gramma's special stuff from the curio cabinet into the livingroom bookcase.  I didn't care where things went--just to get them out.  I'll rearrange later on.
Then Dagan and Leah took the curio cabinet out to the garage.  Goodbye to that, too.  Also had about 23 or 24 years.
They took the table apart and took that out in two trips.  Then carried in the IKEA boxes.  
By this time Liam was more interested in helping Mama and Daddy than playing the games on his phone.  
Ian was the same at his age--but now is more interested in the games--LOL!  You have to appreciate it while they love to help, I guess.  ;)  And Liam was a good helper, indeed.  Loved fetching this and that.
The table took longer than you'd think because of the extension system underneath.
I don't get enough pictures of Dagan.
Wont be long and he has another birthday coming up!
The new kitchen table--TADA!
I love it!  It's a little smaller so gives me more room to move around and get into the frig, etc.  But it extends if I need it--quite easily!  Very happy for the change.
So...

That's been my week.  I am still feeling pretty miserable in general, but I am so happy I am done with chemo!!  And that I will be left alone till I feel better.  Because I googled it and there is a myriad of side effects from immunotherapy one can have, too.  I need a long break.  And I am going to get one.  We'll know more on Friday.

Meanwhile--Annie is glad all the people are gone and it's just us again.  Me, too.
Too tired to find a quote again this week.  Sorry.  Will be taking a nap as soon as I publish this.  But know that I am recovering...and that not everybody goes through this as badly as I did.  My reactions were not the normal.  (How was I to know?)  I should feel quite a bit better by next week, I would think.  Till then...thanks for listening and caring.  You're the best!!  *love and hugs*