Sometimes you need to take your own advice.

Kaleena
Kaleena Member Posts: 2,088 Member

Hi All.

As may of you know, I have been dealing with some issues with my kidneys and a PET positive mass (6.8).   As I was helping another poster here, I realize that I should take my own advice.   I was fixated on all of these issues.   When I reread this post and my advice to her, I decided to ask myself those same questions.

Are you actually feeling ok?

My answer was No.  I feel there was something going on and no one is listening.  Normally, I would be able to handle not feeling well.  I have done it before, but what is making this time so        different.  I was feeling angry too.

So I asked myself  "Why are you feeling this way"?   -

I dug down deep and really thought about this.  Why am I feeling so angry?   Ok I know I am not feeling 100%.  But why am I angry?    So I finally had a melt down and this is what I found out.   I am so angry at the first Urologist that I met with.   I had a CT scan in January which indicated hydronephrosis.  I then had a PET scan (SUV 3.0) which confirmed it and indicated it was moderate hydrourteronephrosis and my gyne/onc wanted me to get a stent put in.   So I met with a Urologist.   He indicated that I didn't have any symptoms to suggest any problems (he also wrote on the his office notes that it was mild (which it wasnt)) and that I should just go back to my gyne/onc and follow-up with him with regard to a tumor that I have.  Further, he said I would not need to have a return follow-up with him.   I had a biopsy of the mass (it was negative) and then had another PET scan in July (SUV 3.2) - Guess what, my hyronephrosis was more advanced and my left kidney shrunk  and that I had some loss of function.   My most recent PET/MRI showed an SUV of now 6.8 and indicated although the hydronephrosis had resolved, that I had left renal parenchymal loss and decreased function.  I was told there is nothing I can do to get the kidney back to normal.   My only thing is to keep it from getting any worse.  I eventually had a stent placed by a completely different Urologist.

So I was totally ticked.   - the reason for my Anger.

To keep myself from going bonkers, I decided to prepare a medical journal of all of the events that have happened to me this year.   Since I have done that, and I keep writing stuff in it, I can write it down and then "LET IT GO".    It has helped tremendously.

Especially now, since my new Urologist says I have nothing to worry about.  (My recent ultrasound - which my PCP wanted -  said I now have mild bilateral hydronephrosis)   I said to Urologist, you mean its on the right side now too?   She says nothing to worry about. The right kidney is working harder for the left kidney.    I have asked her on three different occasions if there is anything I should do diet wise.  She said no.   I also asked if I should limit protein.  She said no.    So I write this stuff down and........LET IT GO.

Thanks for letting me once again rant.   You girls are the best!

Kathy

Comments

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    That's what we are here for. EACH OTHER

    You amaze me Kathy.  I am so glad that you are on this board.  Thanks for posting to our threads and for venting. 

    Jeanette

  • pinky104
    pinky104 Member Posts: 574 Member
    Let it go

    I'm guessing you saw the movie Frozen with your Let It Go comment.  You're right.  You can't change what happened now, and you can't let it stress you out more since too much stress affects your immune system, allowing cancer to get a foothold.  Have you considered a voodoo doll or a kid's punching bag?

  • HellieC
    HellieC Member Posts: 524 Member
    A good plan

    I'm so pleased you have found a way to let all this out!  It eats away inside and writing it down is a really good way to get it outside and also to organise your thoughts.  I have done the same regarding the hassles I have had in organising my Cyberknife treatment.  Sometimes getting it down on paper brings such relief!

    Kindest wishes
    Helen x

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    HellieC said:

    A good plan

    I'm so pleased you have found a way to let all this out!  It eats away inside and writing it down is a really good way to get it outside and also to organise your thoughts.  I have done the same regarding the hassles I have had in organising my Cyberknife treatment.  Sometimes getting it down on paper brings such relief!

    Kindest wishes
    Helen x

    Kathy, it's good to hear that you are letting it go.

    Hi, Kathy,

    I have used journal writing to express and release my pent up feelings.  It does seem to help tremendously.   I like Pinky's idea of the voodoo doll! Although I don't do this often, every once in a while while I am driving on I95 and will scream at the top of my lungs. Wow, what a release that is!! 

    I would be angry, too, with your first urologist who didn't seem to take the situation seriously enough.  You are the expert about you and it is good that you are on top of what is happening with your body.  I have known women who don't seem to care about what is going on inside their bodies and don't seem to be concerned about what medical treatment they receive.  So, consequently, they never advocate for themselves.  With a cancer diagnosis, that seems unwise to me. 

    Glad to hear that you are doing better, Kathy!

    Warm Wishes,

    Cathy 

     

  • cleo
    cleo Member Posts: 144
    Venting

    When diagnosd I was given soft voodoo doll with a pin strategically placed.   I added pins with a sticker attached with my current irritant labelled.  That was grade 4,  seven years ago and I am sure the doll helped the positive.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Thanks

    Thanks Jeannette, Pnky, Helen, Cathy and Cleo for all of your comments.   Yes, maybe Let It Go should be my theme song!   lol    Also, Pinky and CLeo this doll thing you just might have something.   Although I am afriad of dolls - lol.   I saw a Twilight Zone episode when I was young and never wanted a doll after that!   

    Anyway, I hope everyone is doing well.  I know we all have our ups and downs but just know I am thinking of you and sending you hugs!

    Kathy