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*

23 comments:

  1. I hope you feel much better soonest!!!

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  2. I'm so glad you're off of chemo - your reaction to it was violent and alarming. I've heard good things about immunotherapy, but I'm sure even that might have risks (hopefully not as bad as chemo).

    The flowers are all beautiful, so cheerful and soothing, and I like the new kitchen table.
    Take care and rest.

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  3. Well, you brought me to tears more than once with this one, Rita. I am so glad you are done with chemo, and I know nothing about immunotherapy, but I suspect I will be learning along with you. Thank you for taking the time and energy to write all this down. Sending you enormously huge virtual hugs.

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  4. Oh Rita, this has been so awful for you! I'm sorry you had to go through this but thank goodness you contacted the doctor and you don't have to do more chemo. Now just rest, rest, rest and try to eat as you are able!

    I like your new table and the way it makes your space look roomier. Those sunflowers are gorgeous and so happy too! What a wonderful gift!

    Sending you hugs and healing thoughts!

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  5. It is obviously important to you to document this ordeal, but I don't know how you have the stamina to do it. Bravo!

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  6. What beautiful flowers from Karl! I am so glad the Dr stopped the chemo and will try something else. Gene also had problems with his port plugging up...sometimes that stuff they put in for 30 minutes to unclog it did not work...he had three or four different ports before we finally gave up and he gets an IV every week.
    I hope you start to feel better very soon, sounds like you have a Dr that will listen and one that cares about you!
    Rest when you can and get stronger!

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  7. Hi Rita. You are a brave, strong woman. So glad to hear that you are finished with chemo. Good news about the immunotherapy. That chemo sounds absolutely brutal. I love the flowers and your new table. The table we have in our dining room is super old - just like the old one you got rid of. So glad your family is so wonderful and caring. Sending you love, prayers and positive thoughts and wishes from Utah.

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  8. Oh, Rita. What a brutal chemo that was with the side effects. We used to call the stuff they put in the port to unclog it SaniFlush. At one point there was a real shortage of it so I'm glad to hear it's available when you need it. Maybe someone didn't flush out your port properly after it was used last. Glad to hear NO MORE CHEMO. It just wasn't for you. On to the immunotherapy!! Hope you are feeling better. Dry heaves or nausea all the time is no fun, let alone all the other stuff. Hugs.

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  9. So sorry that you are going through such misery. It sounds horrendous. This week has to be better. Right?

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  10. Oh my, you've really had a rough time of it. I'm glad to hear that you won't be getting anymore chemo. Annie sure is beautiful. She looks like our cat "Blackie." You have a super day, hugs, Edna B.

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  11. I'm horrified you're reaction was so severe, and I'm sooo pleased the doctor recognized the problem and has a plan for going forward. The flowers are lovely. I've never seen sunflowers packed that way. Sweet! The table looks like a brilliant idea. I do hope this week brings you some peace and strength.

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  12. Hi, Rita. I'm just so sorry that you've had to endure all of this. I've read back over some other posts since I'm still not back to my blog reading or commenting regularly... will I ever be? lol. And I just want to send you a big (((HUG))) because you've really had some difficult days. I am glad to hear that you are done with chemo and will go onto immunotherapy. A couple members of my family are being treated with it right now. I don't know the details, but it's supposed to help your body get stronger, and it sure sounds like that is what you need. Sure, there are some side effects to pretty much every medicine/treatment, but hopefully this will be much more manageable and you'll do well.
    The roses and sunflowers are beautiful. How sweet that the sunflowers came in little nets and then opened fully. Love it!
    I like your new kitchen table.
    Wishing you some good naps, and healing, and renewed sense of determination to continue with the next type of treatment. You have a strong will and cool people to support and love you. Thanks for sharing. ~Mary

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  13. Rita, just when I was thinking the last post had news about the awful reaction to chemo, I read this one which was even worse. But, of course, you know that because you were going through it. So unfortunate that you were one of those who had such an awful experience and while I have heard of some unpleasantries with meds nothing like yours. What a way to lose weight in not a good way. Like others who commented, the news that you are off chemo was good to read because what good is something that makes you feel so bad in so many ways? Immunotherapy helped Grenville's aunt and hope it does the same for you when you are stronger and able to begin. I would say rest up, but you have been doing lots of that and hopefully the next rests will be more productive and help you feel better and possibly be able to tolerate some types of food.
    The new table is nice and does give you more room. We have been huge Ikea fans for years and decorated a lot of our VA home with pieces we assembled. Some of those travelled with us to NH.
    Sunflowers can bring lots of cheer just looking at them and the ones you received are lovely and may they brighten your days for quite awhile.
    Lots of good thoughts and virtual hugs from NH to ND, my friend.

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  14. OMG! What a horrible ordeal! Usually, rashes are a sign of allergic reaction when taking medications so I'm not surprised he is stopping Chemo. The thing with chemo is that it can be brutal and people do feel lousy on it so you weren't to know that your symptoms weren't normal. I'm just so glad you can now rest up a bit before the immunotherapy but please don't make it too long a break...don't want to give that cancer time to grow any more.

    I hope the immunotherapy is less reactive with you...I don't know anything about it. I'm glad Dr Kobrossy is looking after you.

    Those sunflowers look amazing!
    What a lovely surprise!

    I remember when Leah strapped the table legs. I LOVE your new table!

    Awwww.....sweet Annie. x

    Rest up, dear friend.

    Much love,
    Serena xx

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  15. Too many people are frustrating

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  16. A brutal week. I'm so sorry you have endured such misery. Hope you have a chance to get back your strength before moving on to immunotherapy. Glad chemo is no longer part of your regimen. Take care. Sending healing thoughts your way.

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  17. A nightmare of a week. I continue to be impressed that you can muster the strength to write this blog. i doubt that I would be able to.

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  18. oh sweetie, I'm so sorry you had to go through that. I hope immunotherapy goes much more smoothly. Reactions and side effects to medicines we know could help us, is very hard. So disappointing. But so glad you won't have to do it any more. Your flowers are beautiful. I hope you are feeling much better already. One of the new meds I'm is making me so sleepy. Or maybe it's just coming from being in pain for so long. Who knows, but I think I'm going to take a nap. Best to you. Always know I care

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  19. I had no idea you could be allergic to chemo but I guess it makes sense. So glad your doc caught it!

    I had 4 days off. The one place we didn't get to is IKEA. IT's about 45 minutes away. My newest project is a hack of two of their cabinets... but since I don't have the $ to do the whole thing I guess it can wait. At the rate I'm going it will be sometime in March. :)

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  20. God bless Dr. Kobrossy. He listened to you and took action--that can be hard to find in a doctor. What a horror last week was. I hope you're continuing to feel better. The sunflowers are gorgeous and I'm glad you've enjoyed the roses. Your new table looks nice. It's sweet that Liam wanted to help. Did chairs come with it or are those chairs you already had? It's great that you'll get to move on to immunotherapy.

    Love,
    Janie

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  21. I'm so glad you can move on to the immunotherapy without having to do more of the dreaded chemo. That sounds just awful and I'm glad it's over. The new table is wonderful and those sunflowers are glorious. I hope next week is better for you.

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  22. Dear Rita, I went back and read your most recent postings. You must be so weary. Truly exhausted so that your body begs for rest and your mind is fuzzy and foggy. Thank you for detailed the past week. It must have taken you so much time and effort to do that. How kind of you to keep us all in the loop. I so hope that immunotherapy works for you and that you experience only minor side-effects. Please know that you are in the thoughts and prayers of all who have come to know you through your blog. Take care. Rest and please be gentle with yourself. Gentle and gracious.

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  23. The sunflowers and roses are beautiful! They would definitely bring a lot of joy to one's day! Your new kitchen table is so sleek and modern. Annie looks nice and relaxed. :) That sounds good about not having to do chemo anymore. I hope the immunotherapy works well for you!

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