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UPDATE: NED Monday, Scan day. I am going to vent a little. . .

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I'm a little nuts right now. Bear with me!!

So my husband was supposed to go for his scans at a later date, but he gave me the wrong date and they are now actually MONDAY. 

I found out today. So, not only am I suffering from raging PMS (sorry if that's TMI but man I am an emotional mess, watching Steel Magnolia's is NOT HELPINGCry) but my parents are here visiting so I can't come home and do my usual "routine" while I wait for scan results since they will be here. I usually meditate, practice other breathing exercises and watch Keeping Up With the Kardashians to clear my brain. My superstitious personality is freaking out that breaking the "scan day routine" will bring bad luck. 

I also had a terrible week at work. I work with autistic adults and two young men became very aggressive this week, putting my personal safety at risk. I slept 1 hour Thursday worrying about Friday's work day, and then now I find out about Scan Day being MONDAY. 

Ok, enough of THAT. I hope you are all doing well. Wish us luck Monday. I heard Uncle Ned got kicked out, hoping he's coming over to visit me. 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

His Creatinine was 1.1

I almost crapped when I heard. Looks like his 1 kidney still kicks major butt

Max57's picture
Max57
Posts: 167
Joined: Mar 2015

Take a deep breath..... So far it's been 2 years every thing went well and this year it's going to be alright...... Good luck 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I’m so sorry you’re dealing with all this stress. Is there any way you could go into your bedroom if even for 20 minutes and do your meditating and breathing exercises? I’m sure your parents would understand that you need a little break. And they may welcome a little break themselves and go for a walk or something.

Hoping for all the best and a knock on your door from Uncle Ned. Since you already have family there, what’s one more relative, right? I have a feeling all is going to be well on Monday. Hugs!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I can feel your stress radiating through your post. Poor you! Good news is that maybe just finding out the scan is Monday, it will be a little less time to pre-stress!?! Having extra guests doesn't always make things go smoothly, but try and look at it as your distraction - instead of meditation. Just remember Uncle NED is looking for a place to visit!

I'll send good thoughts your way! Hoping all goes well. Keep us posted!

Big hugs

Jojo

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I'm SO MUCH better today. I'm very much "it will be what it will be." today.

Coming here and seeing the courage of everyone, knowing so many have faced such long and amazing roads makes me know I can get through whatever the scans bring. It's just crappy timing. I'll update when I can. Thanks everyone. 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Thinking of you today!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

And praying for ya's too!

Donna~

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Jojo is right - having scan day sooner is actually less time to stress about it!

And don't be superstitious - routine means nothing for Uncle NED, who is heading your husband's way!

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I'm thinking and praying for you, and wishing him a boring NED report.

Forough

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

I love your post.  It made me smile.  I too like my routine.  Even dealing with cancer, we have our planned events.  Like we have some control over things.  It looks like your scheduled worry time was reduced too.  How stressful!  :)  Chin Up.  Can't wait to hear the good results.  Hugs.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Totally. The routine makes me feel like I've got at least some control over something that is uncontrollable. 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

30 months and counting. . . . finally got a good night sleep last night. 

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

Contgrats and hugs!!  

Kim

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

But it's his cancer problem and you are trying to make it all yours.  I'd think you would want it over with, and from the looks of the posts, it's finished and the results were OK.

The job definitely can be stressful,  My daughter had 9 HS boys with "bad" autism and psychological problems, and 5 aides.  She was ready to quit by October.

You made it through the weekend.  Have you learned anything from this surprise date change?  Other than cancer never asks you if it is convenient for your schedule.

Hang in there, as we all want every test to come back NED.  It never stops and I've been at it 10 years.

Hugs,

donna_lee

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

You know, in many ways his cancer is my cancer. I guess that's just how we've always chosen to deal with it. He's the love of my life, and without him I wouldn't be whole. Every scan, every appointment, every blood test makes it MY cancer too. I guess everyone is different in how they choose to live the cancer, so to speak. For me, I'm super involved in his follow up care. 

The surprise date change really just re-affirmed what I already know about myself: I hate change, I really hate cancer,  I like things predictable, and when things aren't predictable it throws me off my game LOL!!! 

Hugs everyone!! 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Fantastic! I'm so happy for both of you. Go celebrate :)

This was supposed to go under the NED announcement. No idea why it ended up here, lol.

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Great news. See! Follow a routine and have good results. Don't follow a routine and have....good results. :)

Todd

Dembel
Posts: 32
Joined: Jul 2015

Heyhey,

Reading your post it was almost like reading myself, ok I don't work with autistic adults, but still ;-)

My partner had total nephrectomy last June. October he was NED with good kidney values (GFR) in the blood from his remaining kidney.

Now....scan today.........bloodworks were not great, GFR went from 78 to 62 :-(

SO stress.....and it feels like my cancer, and I'm already imagining how to cope when he will be gone, so many silly thoughts. Now at work, trying to stay busy until he calls me. He preferred to go alone, and no matter how hard it is, I personally think it's better also, I make him so incredibly nervous.....

But I'm worried sick......

grtz

Dem

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Excellent, congratulations! Make these 30 months to 30 years!

Dembel, wish your husband luck with his scans

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I totally get you. The "silly thoughts" are awful which was why I saw (and still do) see a great therapist. 

Coping strategies help. 

Post updates, I'll be thinking of you

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

That's a pretty good value. It's highly variable, by the way. Your muscle mass, how much water you drank, what you ate, all of this can throw the number off.

But 62 is good for having one kidney. Mine has been 40-45 ever since my other kidney was removed.

Todd

P.S. How often are they checking it? You do want to make sure it stays stable. Are you seeing a nephrologist? A change of +/- 5 should be looked into I think (that's what my nephrologist just told me on Monday). Might want to see a nephrologist.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

YES!! Way to go with Uncle Ned's visit! So happy for you!

And now let him go visit at Dembel's house!

Cheers and Salud!

Jojo

Dembel
Posts: 32
Joined: Jul 2015

Yes, NED as well :-)

No strange things to be seen on the PET scan and the low kidney value (GFR) probably due to the fact that he took diclofenac for a few days...... Ahr!! He should be much more careful about taking medicines, but I think he got the message now....new follow-up bloodwork in 3 months to evaluate the kidney functioning, but next scan only in December!

Ready for some champagne!!!

Now hopefully Uncle Ned will go to the next house to bring some good news.

Silly disease this cancer, so invisible and yet sooooo present.....

 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Yay! Break open that champagne!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Nothing to it. All that worrying when you could have planned a party. Maybe next one. Or the one in ten years. Wonderful news! I wish I could figure out the secret but I always miss something. Go CELEBRATE!!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

This is meant for everyone here: those of us affected directly or indirectly.  And yes, me too. Haha  I lose sight of the fact that life really is short no matter how many years we are given & we get caught up in the worry about the thief we call cancer.  In the meantime, some other little thief could sneak in while we concentrate on cancer and snatch our precious life.  We all need to focus on the day given, be thankful for that & try to find the nuggets of pleasure & joy we seek. 

Stepping off my soapbox now. Haha. I really think this was a reminder to myself, cause I'm selfish like that.

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