Monday, August 23, 2021

August 23, 2021 Monday--10am

Good Morning.
Was another week that seemed like two...but I am here (bagless!) and on total R&R this week.  Endless sticky days in the 90s...but we finally got a really good steady rain with some thunder on Friday.  Still quite humid but the temps dropped down into the 70s so I've had the place opened up--so nice!
Leah was by every day.  Monday night I started to see little blood clots in the urine bag and it was turning darker.  So I messaged the surgeon's office on Tuesday to make sure that was normal.  She wrote back herself, which was nice.  She said that was normal and the poking pain was, too, for a lot of people.  Sorry.  Drink lots of water (which I have been) and see you Thursday.

Leah was by every day doing bird seed, etc, and checking on me.

By Wednesday the pee was almost a dark orangish brown and had lots of little blood clots.  I never slept all that night before the clinic visit.  I tried three times.

Thursday Leah had the boys wth her.  They came over early so Leah could help me with the leg bag.  Way more uncomfortable than the hospital bag as far as having to pull the straps so tight to keep it from sliding down your leg!  I'm glad I didn't bother with that for ten days--whew!  And I am so short that the tube was crimped no matter what I did.  I would have had to wear the bag around my ankle--lol!  

Wore a skirt that did go to my ankles and hobbled my way into the hospital clinic.  Was even more packed than the last time I was in there.  Leah and the boys were out in the car...lucky to even find a parking space.  I forgot my cell phone at home--never have done that before--but then I haven't had the boys here and a leg bag to focus on--LOL!

First thing was getting the catheter out...up close and personal with a nurse...sitting on a toilet that had a urine catcher tray under the  brim.  It reminded me of giving birth--you don't care who is down there looking or doing whatever--you just want it out--ROFL!  This took no time at all.  She filled me up with cool, clear water in a syringe up the tube until I had to pee and in one swift movement she deflated the bulb thingie and slipped it right out.  Didn't hurt a bit and I felt like dancing!  Oddly--no blood and clear water.  Nice! 

 I was warned I could have bleeding off and on for 6-8 weeks while I heal but have have very little so far at all.  But then I went a week after surgery before I had blood, so who knows?

Next I waited for Dr. Regender (the surgeon) to get her verdict.  She got Leah on the phone so she could hear.  That was nice of Dr Regender to think of that...but then you know it is because they figure you need the moral support...so I was prepared for the worst...or so I thought.

She said the cancer had gone into the wall or the muscle.  She had gotten as much as she could.  But that is why they wanted me on the catheter for the ten days--so as not to stretch out the bladder.  (I suppose--after you have dug into the muscle wall that is probably why she didn't fill my bladder for an hour with the chemo liquid stuff, either.)

She said it was an agressive cancer (made a point of that fact) and they don't know for sure if it had made it through the bladder wall (into other organs)--but she wanted them to check to see if it had spread anywhere else.  I already had a CTScan set up for the 13th for my lungs, lymph nodes, etc.  She was thinking they would probably want me to have chemo first and then my bladder removed down at Mayo Clinic in Minnesota.  We lost Leah on the phone (the boys had been noisy and she had put herself on mute--before she could get to the phone Dr Regender hung up because she didn't answer).  Dr Regender said they have a tumor/cancer team and asked my permission for them to discuss me at their weekly meetings.  Of course.  She knew I was scheduled for the oncologist on the 30th and now I'll see her again on the 31st, too. Said she'd probably call me this week if they discuss me at the team meeting.

Then I went to the lab for a blood draw.  I could have waited, but I just wanted to get it over with as long as I was there.  Found a phone to call Leah on my way to let her know I would be a while yet.  The lab/xray waiting room was so full that there was only one chair left right next to a young woman wearing her mask under her nose.  No social distancing at all--couldn't--too many people.  They make everyone wear a mask so you see the ones with the masks worn under their noses in protest--often pulling them down completely once in a while.

Anyways, waiting for the lab for 35 minutes gave me some time to kind of numbly sit there and ponder what she said.  Her fear of the cancer aggressively gobbling up my innards and needing my bladder to be removed soon...well, that doesn't make sense to me.  I had bleeding over a year ago.  I have had this for a long time.  Obviously over a year now.  And it is a different cancer than in my liver.  So we don't know if it spread anywhere else yet until more testing, but if it was so agressive why are there two different cancers?  Why isn't it much worse after over a year?  (She probably doesn't know about the bleeding over a year ago with no infection/bacteria culture.)

And everything I have kept getting from GA is to take it slow and easy--stay calm--don't panic--one day at a time...

Not that I might not end up down in Mayo Clinic, but it didn't feel right, you know?

Anyways, I got dropped off at home...big hugs from Leah outside the car...we had our masks on.  Shouldn't have but I did need a hug.  I had decided that since there was so much exposure at three different areas of the hospital and clinic (connected and I was in both sides) that I would quarantine for a week or so.  I don't want to give the boys delta!  

Active covid cases in North Dakota have gone from 212 July 21st to 1,545 August 21st.

We got rain on Friday and I did laundry.  So happy to be able to walk around normally--LOL!  Now I can finally tell I am a bit raw inside from the surgery (and probably the catheter) but am doing well so far.  Very little blood and nice light colored urine.  Life is good.  

Knock on wood.

Saturday Dagan, Leah, and I had a video call confab about the cancer and covid and such.  I think they were afraid I was just going to do whatever the doctors said--but right away I told them about what makes no sense to me.  Having my bladder removed would be an absolutely totally last ditch thing for me to do.  I have been thinking that if I do the chemo (and have had no bad feelings about doing chemo) that maybe can get rid of both cancers?  Who knows?

We think that, since carbs/sugars feed cancer cells, that my changing my diet to very low carbs may have been keeping the "aggressive" cancer at bay.  Starving it, you know, by feeding it so little.  So between us we kind of came up with my own treatment plan.  I do plan to have chemo and it sounded like that was a given as an option from the doctors...and that they wanted to do that first regardless.  Beyond that--I plan to eat even less carbs or no carbs, continue to drink lots of water (maybe even a little less coffee--lol!), try to get some actual sun several times a week (for vit D and spirit), use the sauna regularly once they get it over here (this coming weekend or the next--whenever they can borrow a truck or van), do some fasting (also for cleansing and starving the cancer), and continue to do my sessions with Music To Disappear In and any other form of meditation/healing energy I can think of.  That's my own personal cancer plan.

I did google it and it is quite rare for people to have two different kinds of cancer at the same time.  Aren't I the lucky one--LOL!  I'll find out in September if I have any more, I guess--same or different.  Hope not...but nothing would totally surprise me anymore.

Anyways, I am home with Annie for a while.  McFamily left today through Friday to her grandparent's lake cabin.  Annie is happy so far with things feeling a lot more normal...no barfing or pooping outside the box since Thursday.  She's been very cuddly and purry.  :)   Quiet days.  

I always get excited when I see the ground squirrel.  (Not the best picture.)  It is also surviving.  Hasn't been trapped yet.  :)
We've been able to have the place opened up since the thunderstorms and steady rain so Annie is content to observe by the screen door.
And this weekend I got quite a surprise from Deb Jones!  
I know it looks blue in the photo but it is a beautiful teal color (a favorite color of mine).  Filled with wonderful, healing, comforting, encouraging words to wrap myself up in.  Thanks so much, Deb.  What a perfect gift!

Leah has these rotating photos of hers and mine on my smart TV.  She got some older pics from her aunt, I think, and those have been added into the rotation.  Every time I see pics of Leah when she was little (with her sister, Michal, in many of them) it just melts my heart.
Leah's the dark-haired angel on the left.  (Yes, her hair is naturally curly but she straightens it.)  Funny--seeing pics of her when she was little does the same thing to my heart as seeing my Dagan when he was just a tiny guy.  Love them both so much.

So, another eventful week.  This coming week will be quiet and calm.  May or may not get my sauna next weekend, but other than that--R&R time baby!  I didn't realize how exhausted I was.  I fell asleep 9pm till midnight last night and was right back to sleep at 12:30am till 9:30am!!  Oh, I needed that.  Was wonderful.  

Anyways, that's it for last week.  I plan to fast a couple of days this week...liquid fast..and delight in the "normal" days.  :)  Till next week...
****
"Love and hope are infinitely more powerful than hate and fury."
Heda Margolius Kovaly

19 comments:

  1. Make a plan and listen to the Doctors and then decide what you want to do....Leah and Dagan will help guide you. I am so sorry that Cancer is happening to you. I hope you can rest this week and do some fun stuff! :)

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  2. Oh Rita, I am so glad you don't have that bag to wear any more. And I suspect that there is so much more to your recovery that will surprise everyone. You are doing everything right, for sure. I too think the bladder removal is not the best idea. I am sending you all kinds of healing energy, and I am glad that Deb sent you that blanket to wrap yourself up in. You are loved by so, so many who have never actually seen you in the flesh. I know you as well as I know myself! Hugs and delicious sentiments.

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  3. Your week was more interesting then mine but I go nowhere, see no one and do nothing

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  4. I had to visit the hospital last week. I figured they'd all be the same now, but ours seems so different than yours.

    It's difficult to read of your situation, but you do carry yourself with grace and dignity as far as I can tell.

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  5. So glad you got the catheter out. I love your personal cancer plan. I am so glad you like the comforter. I really like that color too and hoped you would as well. Covid cases are up around here too, thanks to all the anti-vaxxers. Don't even get me started on that... Anyway, I am glad you are staying in, relaxing, getting some rest and staying positive. You are doing everything you need to do. Leave the rest to your doctors and God. Virtual hugs from Utah. :-)

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  6. I just read Jo-Anne's comment above. Just like all my weeks, too. You had an eventful week. I'm glad you got your catheter removed and are able to get around after the surgery now. I hope the chemo takes care of the cancer that is left in your body, dear.

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  7. I'm so glad you got rid of that bag and catheter, hopefully that makes it easier for you to get around. I'm sorry the doctor did not have better news for you. I have spent some time at Mayo with my brother and it is a wonderful hospital with many excellent specialists. Keep up your meditation, healing energy and relaxation. I believe that will help you in many ways. I'm happy to hear that Annie is doing better. She will help you too with her love and cuddling! It sounds like this week will be a nice quiet one for you and that is good. I'm keeping you in my prayers and sending lots of healing thoughts!

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  8. I'm glad to hear that the catheter is out now. I love your attitude. It's very healing. It's good that you have a kitty to cuddle with. I miss my little dog. Hopefully, one of these days I'll get another little dog or kitty. I'm keeping you in my prayers, hugs, Edna B.

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  9. Can only imagine what a relief it was to get rid of that catheter. On the other hand, the news about the cancer is not great. You seem to have as good an attitude as possible under the circumstances. Ultimately, as you have indicated, you will be the one to decide what makes sense for your future treatment. Hoping for the best possible outcome for you and the strength to deal with whatever comes your way.

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  10. This was definitely a good news and not-so-good news post, Rita. Yeah for that catheter removal and for your being able to walk around your apt, which Annie seems so happy about too! The news about possible double cancer wasn't great to read and while the doctors do their best to prepare a patient, it certainly was devastating news for you to hear and us to read. There may be something in what you have been doing these past many months that has helped you, so you and your family will need to re-evaluate when the time comes and as you said, perhaps after the chemo treatments. A friend who lives in MN does nothing but rave about how pleased she is that the Mayo Clinic is near her, and if that eventuality comes about, you will be in good care there. The gift from Deb was certainly thoughtful.Thanks, as always, for the update and continuing to keep you in my thoughts & prayers

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  11. It is both fascinating and terrifying to read this account of your body's reaction to cancer, the interface with the medical professionals, the way it impacts personal relationships and so on. You are a brave person to document it all like this. Please accept my very best wishes.

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  12. Well, now you know. And when you know, you can move forward. It's scary, to be sure. But now you can take it on. I know this is such a lot to process but you sound like a wise, involved patient and that's a huge plus. Ultimately, it's your body and your choice. I do know wonderful things about Mayo in Rochester if you go there. (I've experienced it myself as patient and with my mom.) You and Annie snuggle up and take care, recharge before the next steps. You can do this.

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  13. Oh...Rita...so much news (good and challenging) to deal with in a week. You sound like you have a solid plan for dealing with cancer that will slow it and starve it out of your body, plus the music to calm and relax you.

    The teal wrap looks so soft and comforting. What a thoughtful gift.

    The active COVID cases really jumped up during the past month. Our county here in the metro also is noting some significant increases.

    Hope this week is a calm and peaceful one for you as you continue to heal, and to figure out the longer-term steps of your medical journey.

    I'm glad that Annie is feeling better this week. Maybe she can sense that you had good things happen with the catheter being removed and there's less stress about that.

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  14. An eventful week! I'm glad you're having so little difficulty as a result of having the catheter so long. I know that's a relief. I'm encouraged you're taking responsibility for seeking out things you can do to support your own health and healing. That patio will be a real blessing, won't it! After they see how things are post-chemo you can reconsider your options. One day at a time.

    And that sauna sounds like a true delight. Such a wonderful idea y'all had there :)

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  15. oh, I googled Music to Disappear In. Cool! Thanks :)

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  16. You have all the info and can move forward. I don't know if you know Susan. SHe was Ash Tree Cottage blog. SHe is on social media a lot but she had a bad cancer scare last year. SHe is doign remarkably well. I will ocontinue to pray. Have not head from Karl. Hoping he is doing ok. Take care.

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  17. My dear dear friend, Positive thoughts and prayers for you...
    Thank you for the beautiful card.....always thinking of others. 💜♥️💖❤️

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  18. knowledge is strength and now you can look forward knowing. You have a plan and I know the courage. Always positive and healing energy sent to you.

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  19. GA serves you well. I like your questions and your plan. I probably would have scheduled the surgery ASAP and then regretted it. The throw is gorgeous. I bet it's soft. No bag for you, baby. I'm glad that part is over.

    Love,
    Janie

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