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todd121
todd121 Member Posts: 1,448

Just stopped in to read up a little and say hi. I did visit the hospital today for my quarterly CT scans. My anxiety has been quite high these past few days and it will be until next week, because I won't get the results this time for 8 days. I've been spoiled. The past 3 years I had scans in the morning and had results in the afternoon by the time I saw my oncologist. The radiologists were having trouble keeping up with this scheduled, so non-emergencies are not read on the same day any longer.

Hope I can pop in next week and tell you all that I'm NED. But either way, I will pop in and update you.

Sorry I'm not around much. My work has been unbelievably busy. I just haven't had time to be online in the evenings and on weekends. I'm on a computer all day (I'm a programmer) so by the time work is over, I've had my fill of being on the computer. It's the last thing I want to do on the evening and weekends.

Still miss seeing my family here and glad to see so many familiar faces and sad to see the new ones, but glad if you have to be here, that you're here with such a great group of people all living with cancer.

Best,

Todd

Comments

  • Denisedh
    Denisedh Member Posts: 28
    Prayers for NED!

    thinkung of you.  The waiting is the hardest part.

  • mrou50
    mrou50 Member Posts: 389
    Thoughts

    Glad to hear from you.  Here is hoping NED comes visiting and stays along time the only guest we never want to leave us.

     

     

    Mark

  • angec
    angec Member Posts: 924
    NED....NED.....

    NED....NED.....

  • Jojo61
    Jojo61 Member Posts: 1,309
    Hi Todd,
    We are cheering for

    Hi Todd,

    We are cheering for NED!! Take care of yourself and try not to work so hard. We miss you!

    Keep us posted!

    Hugs

    Jojo

  • APny
    APny Member Posts: 1,995
    Jojo61 said:

    Hi Todd,
    We are cheering for

    Hi Todd,

    We are cheering for NED!! Take care of yourself and try not to work so hard. We miss you!

    Keep us posted!

    Hugs

    Jojo

    Keeping fingers crossed for

    Keeping fingers crossed for NED report! 8 days is just so long to wait.

  • Shecka1121
    Shecka1121 Member Posts: 113
    APny said:

    Keeping fingers crossed for

    Keeping fingers crossed for NED report! 8 days is just so long to wait.

    Will pray for NED and sure it

    Will pray for NED and sure it will be.  Keep busy, it will make the days go by faster :)

  • Jan4you
    Jan4you Member Posts: 1,327

    Will pray for NED and sure it

    Will pray for NED and sure it will be.  Keep busy, it will make the days go by faster :)

    Glad you stopped by, Todd,
    Glad you stopped by, Todd, always happy to SEE you!

    Sorry for the anxiety. But I bet your report will be ready in less than 8 days.
    I don't think they can wait that long to dictate reports.

    Now why don't you give us (me) some of your anxiety so you can get on with your life
    worry-free. We'll always be here for you.n

    I'll be thinking of you and sending you anxiety free moments!!

    Warmly, Jan
  • Srashedb
    Srashedb Member Posts: 482
    The Wait

    Todd:

    absolutely, the wait is the worst and sorry that the system changed after you got used to the quick turn-around.

    thankfully, work will keep you somewhat distracted and by all means, post as soon as you hear.

     

  • Allochka
    Allochka Member Posts: 974
    Srashedb said:

    The Wait

    Todd:

    absolutely, the wait is the worst and sorry that the system changed after you got used to the quick turn-around.

    thankfully, work will keep you somewhat distracted and by all means, post as soon as you hear.

     

    Keeping fingers crossed that

    Keeping fingers crossed that uncle NED will pay a visit to you!

    Interesting that you mention being very busy at work, working all the time, when recently we had a post "Carpe diem", when recently diagnosed person changed focus and started to concentrate on enjoyable activities more...

    Do you feel the need to switch your focus sometimes? Work less, have fun more? 

  • todd121
    todd121 Member Posts: 1,448
    Allochka said:

    Keeping fingers crossed that

    Keeping fingers crossed that uncle NED will pay a visit to you!

    Interesting that you mention being very busy at work, working all the time, when recently we had a post "Carpe diem", when recently diagnosed person changed focus and started to concentrate on enjoyable activities more...

    Do you feel the need to switch your focus sometimes? Work less, have fun more? 

    Working Less....

    I know I have a choice, but I do like my job and don't really want to leave here. I'm not sure I can work less and keep this job. After my last surgery I told my boss I want to take it easy, work less, maybe even take unpaid time off. He agreed. Then the next thing I know work is pouring into our group and we are hiring two people to work for me, and I'm interviewing people, etc. (and I got a promotion).

    Is it what I want to do? Not so much. Changing jobs wouldn't necessarily bring less work/stress. It's something that's very hard to judge when you are interviewing somewhere.

    Boredom/lack of work brings anxiety as well. I've had a few jobs like that where I had to act like I was doing something useful when I really wasn't and that sucks too.

    Balance can be hard to achieve. It's up to me. I just need an attitude adjustment. Let go. Breathe. It's what my cancer has been trying to teach me for 3 years now. Lol. It's not easy, because we can't let go of everything. There's "stuff" that has to be done and that we want to do as well.

    Appreciate all the NED wishes. When I'm away so long and come back and post, I feel a little bad about not being here more to support everybody and the newcomers. Love seeing you guys. Hugs and warm wishes.

    Todd

  • Allochka
    Allochka Member Posts: 974
    todd121 said:

    Working Less....

    I know I have a choice, but I do like my job and don't really want to leave here. I'm not sure I can work less and keep this job. After my last surgery I told my boss I want to take it easy, work less, maybe even take unpaid time off. He agreed. Then the next thing I know work is pouring into our group and we are hiring two people to work for me, and I'm interviewing people, etc. (and I got a promotion).

    Is it what I want to do? Not so much. Changing jobs wouldn't necessarily bring less work/stress. It's something that's very hard to judge when you are interviewing somewhere.

    Boredom/lack of work brings anxiety as well. I've had a few jobs like that where I had to act like I was doing something useful when I really wasn't and that sucks too.

    Balance can be hard to achieve. It's up to me. I just need an attitude adjustment. Let go. Breathe. It's what my cancer has been trying to teach me for 3 years now. Lol. It's not easy, because we can't let go of everything. There's "stuff" that has to be done and that we want to do as well.

    Appreciate all the NED wishes. When I'm away so long and come back and post, I feel a little bad about not being here more to support everybody and the newcomers. Love seeing you guys. Hugs and warm wishes.

    Todd

    No need to feel bad, we know

    No need to feel bad, we know you are thinking of us, and sometimes it is hard to find time to post.... I have plenty of time now, because I do that at night, sitting by the crib, while Alice is in the mood of spitting out the pacifier and then starting to freak out about it :-) it usually lasts for half an hour, enough to read the news and to post :-)

    completely understand this boredom thing if less work. I had couple of such periods in life, and it drove me crazy. I like it when things are exciting and challenging, otherwise I literally feel myself getting dumb...

    there is a thin line between loving tough work challenges and becoming too overworked and loosing joy... Let's never cross, especially when our diagnoses teach us to appreciate every moment.

  • foroughsh
    foroughsh Member Posts: 779
    Will pray for NED report and

    Will pray for NED report and sure it will be. Hope uncle Ned stays with you and never leaves.

    Forough

     

  • todd121
    todd121 Member Posts: 1,448
    Thanks

    Appreciate all the good wishes. My anxiety has been really high all week. I keep wondering why I'm so anxious, then I remember that I'm waiting for the CT results. Next Wednesday I'll find out.

    This past surgery, the glue or sutures they used in my wounds from the laproscopy has given me allergic fits. I'm finding 6 months later that a couple of my incision sites are developing keloids and the shape looks like it's because of the internal sutures. Two of the sites alternately have been swelling and itching for no apparent reason. I had a very bad reaction to this surgical glue this go around. I sure hope I don't need another surgery. I'm not sure how to handle telling them not to use the glue. Not sure if it was a specific glue, or if it was the same I had the first surgery and just didn't have a reaction to the second surgery or what. It really slowed the healing process. Plus, I had an MRI with contrast a month after my surgery, and all the surgical sites swelled and turned bright red immediately. It was very odd. The technicians in the MRI room had never seen that. They called in the head of radiology to look at me and he said I was having a reaction to the contrast. Now I'm not sure if I should allow the MRI contrast next time or not.

    BTW, my nephrologist said that MRI contrast can cause serious problems in patients with reduced kidney function and we should get a reduced dose of contrast. Funny thing is, I've mentioned this to my oncologist at the cancer center and he both doesn't seem to know this and doesn't seem to care. Rather annoying. She pointed me to the guidelines online. It can cause some kind of permanent skin condition that can be fatal in patients with reduced kidney function. If you have reduced kidney function and get an MRI with contrast, check into it beforehand so you can show the radiology team. It doesn't seem to be widely known (yet).

    Todd

  • Srashedb
    Srashedb Member Posts: 482
    todd121 said:

    Thanks

    Appreciate all the good wishes. My anxiety has been really high all week. I keep wondering why I'm so anxious, then I remember that I'm waiting for the CT results. Next Wednesday I'll find out.

    This past surgery, the glue or sutures they used in my wounds from the laproscopy has given me allergic fits. I'm finding 6 months later that a couple of my incision sites are developing keloids and the shape looks like it's because of the internal sutures. Two of the sites alternately have been swelling and itching for no apparent reason. I had a very bad reaction to this surgical glue this go around. I sure hope I don't need another surgery. I'm not sure how to handle telling them not to use the glue. Not sure if it was a specific glue, or if it was the same I had the first surgery and just didn't have a reaction to the second surgery or what. It really slowed the healing process. Plus, I had an MRI with contrast a month after my surgery, and all the surgical sites swelled and turned bright red immediately. It was very odd. The technicians in the MRI room had never seen that. They called in the head of radiology to look at me and he said I was having a reaction to the contrast. Now I'm not sure if I should allow the MRI contrast next time or not.

    BTW, my nephrologist said that MRI contrast can cause serious problems in patients with reduced kidney function and we should get a reduced dose of contrast. Funny thing is, I've mentioned this to my oncologist at the cancer center and he both doesn't seem to know this and doesn't seem to care. Rather annoying. She pointed me to the guidelines online. It can cause some kind of permanent skin condition that can be fatal in patients with reduced kidney function. If you have reduced kidney function and get an MRI with contrast, check into it beforehand so you can show the radiology team. It doesn't seem to be widely known (yet).

    Todd

    Contrast

    after months of back and forths on contrast with the onc, PA and techs, the last two scans were done without and although they are harder to read, they can be read and everyone is fine with it.

    the bonus was a lowered creatinine level last month; a nice surprise since our hope waa simply to maintain it as stable.

    this last time, the tech lengthened a long MRI by repeatedly calling the radiation/on oncologist.

    Sarah

  • todd121
    todd121 Member Posts: 1,448
    Srashedb said:

    Contrast

    after months of back and forths on contrast with the onc, PA and techs, the last two scans were done without and although they are harder to read, they can be read and everyone is fine with it.

    the bonus was a lowered creatinine level last month; a nice surprise since our hope waa simply to maintain it as stable.

    this last time, the tech lengthened a long MRI by repeatedly calling the radiation/on oncologist.

    Sarah

    MRI Contrast

    I saw a schedule of reduced dosage based on kidney function somewhere.

    Excellent information here on the problem and example of guidelines at UCSF:

    http://www.radiology.ucsf.edu/patient-care/patient-safety/contrast/mri-with-contrast-gadolinium-policy

    It seems to be a little more complicated than I thought. My nephrologist told me about this issue.

    It's funny. My nephrologist was more concerned with the MRI contrast than the CT contrast, but my oncologist won't let me have the CT contrast (even a smaller dose) but insisted on the MRI contrast because he's concerned about my kidneys.

    Todd

  • todd121
    todd121 Member Posts: 1,448
    NED

    Got good news yesterday. Nothing for concern seen on my CT.

    So I worried for nothing. Haha. It's hard to stop. Next scans in December. So now I start worrying about December. Argh.

    Thanks for all the good wishes.

    Todd

  • Shecka1121
    Shecka1121 Member Posts: 113
    todd121 said:

    NED

    Got good news yesterday. Nothing for concern seen on my CT.

    So I worried for nothing. Haha. It's hard to stop. Next scans in December. So now I start worrying about December. Argh.

    Thanks for all the good wishes.

    Todd

    Wonderful for you Todd :)

    Wonderful for you Todd :)

  • Srashedb
    Srashedb Member Posts: 482
    todd121 said:

    NED

    Got good news yesterday. Nothing for concern seen on my CT.

    So I worried for nothing. Haha. It's hard to stop. Next scans in December. So now I start worrying about December. Argh.

    Thanks for all the good wishes.

    Todd

    EXCELLENT

    isn't it great to get this behind you? What schedule do they test you?

    Sarah

  • Allochka
    Allochka Member Posts: 974
    Srashedb said:

    EXCELLENT

    isn't it great to get this behind you? What schedule do they test you?

    Sarah

    Cool! Another happy NED, oh

    Cool! Another happy NED, oh joy! :-)

  • APny
    APny Member Posts: 1,995
    Allochka said:

    Cool! Another happy NED, oh

    Cool! Another happy NED, oh joy! :-)

    That's fantastic news! So

    That's fantastic news! So happy for you.

  • todd121
    todd121 Member Posts: 1,448
    Srashedb said:

    EXCELLENT

    isn't it great to get this behind you? What schedule do they test you?

    Sarah

    Thanks. Yes. Sort of. :)

    I'm on a 3 month schedule. So I go back the week before Christmas.

    It is a little bit of a relief. Of course what I really want is to not have cancer/not have any chance of it coming back, or at least know it's not coming back for X months. Maybe. It will come back when it will come back. The scans just tell me at that moment in time what they can see. They don't scan my head, so I don't know if my brain is ok. And I don't know if there's anything too small to see. I'm never satisfied. When they found my adrenal tumor, they looked back 6 months and could see it there. They just didn't notice it until it got big enough to change the size of the gland.

    What I'd really like is for none of us to have to deal with this!

    Thank you. It is some relief. Yes.

    Todd

  • Allochka
    Allochka Member Posts: 974
    todd121 said:

    Thanks. Yes. Sort of. :)

    I'm on a 3 month schedule. So I go back the week before Christmas.

    It is a little bit of a relief. Of course what I really want is to not have cancer/not have any chance of it coming back, or at least know it's not coming back for X months. Maybe. It will come back when it will come back. The scans just tell me at that moment in time what they can see. They don't scan my head, so I don't know if my brain is ok. And I don't know if there's anything too small to see. I'm never satisfied. When they found my adrenal tumor, they looked back 6 months and could see it there. They just didn't notice it until it got big enough to change the size of the gland.

    What I'd really like is for none of us to have to deal with this!

    Thank you. It is some relief. Yes.

    Todd

    Perhaps they'll reduce the

    Perhaps they'll reduce the frequency of scans after you being NED for a while, so there will be less stress?