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

sblairc
sblairc Member Posts: 585 Member
edited April 2016 in Kidney Cancer #1

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. 

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Comments

  • sblairc
    sblairc Member Posts: 585 Member
    But there was a positive note

    His Creatinine was 1.1

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

  • Max57
    Max57 Member Posts: 177 Member
    Take a deep breath

    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
    APny Member Posts: 1,995 Member
    Max57 said:

    Take a deep breath

    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 

    I’m so sorry you’re dealing

    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
    Jojo61 Member Posts: 1,309 Member
    I can feel your stress

    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
    sblairc Member Posts: 585 Member
    Jojo61 said:

    I can feel your stress

    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

    You guys are the best!!

    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
    APny Member Posts: 1,995 Member
    sblairc said:

    You guys are the best!!

    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. 

    Thinking of you today!

    Thinking of you today!

  • hardo718
    hardo718 Member Posts: 853 Member
    APny said:

    Thinking of you today!

    Thinking of you today!

    Thinking of you

    And praying for ya's too!

    Donna~

  • Allochka
    Allochka Member Posts: 1,060 Member
    hardo718 said:

    Thinking of you

    And praying for ya's too!

    Donna~

    Jojo is right - having scan

    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
    foroughsh Member Posts: 779 Member
    sblairc said:

    You guys are the best!!

    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. 

    I'm thinking and praying for

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

    Forough

  • cheatinlil
    cheatinlil Member Posts: 197
    foroughsh said:

    I'm thinking and praying for

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

    Forough

    I love your post

    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
    sblairc Member Posts: 585 Member
    NED!!!

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

  • daisybud
    daisybud Member Posts: 541 Member
    sblairc said:

    NED!!!

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

    Yah!!!!

    Contgrats and hugs!!  

    Kim

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    daisybud said:

    Yah!!!!

    Contgrats and hugs!!  

    Kim

    Yeah, Stress!

    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
    sblairc Member Posts: 585 Member
    donna_lee said:

    Yeah, Stress!

    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

    His cancer, my cancer.

    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!! 

  • sblairc
    sblairc Member Posts: 585 Member

    I love your post

    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.

    Control

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

  • Dembel
    Dembel Member Posts: 32
    Same....

    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
    Allochka Member Posts: 1,060 Member
    Dembel said:

    Same....

    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

    Excellent, congratulations!

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

    Dembel, wish your husband luck with his scans

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    YES!! Way to go with Uncle

    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

  • sblairc
    sblairc Member Posts: 585 Member
    Dembel said:

    Same....

    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

    GFR is highly variable, it will be ok

    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

  • Dembel
    Dembel Member Posts: 32
    He did!

    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.....