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todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

Denisedh's picture
Denisedh
Posts: 28
Joined: Aug 2015

thinkung of you.  The waiting is the hardest part.

mrou50
Posts: 389
Joined: Mar 2013

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's picture
angec
Posts: 923
Joined: Mar 2012

NED....NED.....

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

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's picture
APny
Posts: 1945
Joined: Mar 2014

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

Shecka1121
Posts: 114
Joined: Apr 2015

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

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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
Posts: 482
Joined: Dec 2013

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's picture
Allochka
Posts: 869
Joined: Nov 2014

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's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
Allochka
Posts: 869
Joined: Nov 2014

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's picture
foroughsh
Posts: 775
Joined: Oct 2014

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

Forough

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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
Posts: 482
Joined: Dec 2013

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's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
todd121
Posts: 1425
Joined: Dec 2012

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
Posts: 114
Joined: Apr 2015

Wonderful for you Todd :)

Srashedb
Posts: 482
Joined: Dec 2013

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

Sarah

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

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

APny's picture
APny
Posts: 1945
Joined: Mar 2014

That's fantastic news! So happy for you.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
Allochka
Posts: 869
Joined: Nov 2014

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

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