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Its that time again

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I see a pattern, and I don't know how to break it. 

My CT Scan and bloods are on the 27th. 

I feel myself slipping from the happy, carefree, positive person I am as I approach the scans and blood work. It feels like their is cotton wool in my head and I can't get it out. I want to smile and be happy, I do smile and I am happy but theres this feeling in my head and I just can't get it out. I can't express it either, as you can see. 

I'm not moping around, thats just not me, but its there, the swinging blade about to drop. 

And now, all these deaths in the news, and normally I think 'I can beat this. I will beat this' and then when I see our friends here passing and folks in the news, its like 'There is no reason why it can't be me' and of course, there isn't.  

Yeah, yeah, I know. We all have to die sometime. We could get hit by a bus, we....... I've heard it all, I know it all, but that doesn't help. 

Well thats off my chest now. 

Gosh, I am looking forward to Spring. The snow is beautiful, for sure, but I want some bright sunny flowers to take pictures of. 

Thanks for listening. 

Sue - Trubrit

jen2012
Posts: 1607
Joined: Aug 2012

Hugs Sue.  No advice as I have the same issues and it's not even me.  I always try to remind myself that worrying won't change things,  stay busy is the only thing that's helps me stop dwelling on things.

 

Sooker55
Posts: 21
Joined: Aug 2013

I totally relate to everyone on this thread.  Had CEA on Monday, and I know test result was posted to my chart early Tuesday morning cuz I got notification that something was added, and I can access this electronically, but here it is Wednesday nite and I can't bring myself to look.  Taking the position that no news is good news.  Last CEA rising a bit from 3.2 to 3.6 so of course I am worried sick. Nothing from doctor's office yet. 

 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

When I had my test done at the hospital I was able to pick up the results. I drove out to a special place, all alone, surrounded by birds, trees, rocks, and read my results. Good or bad, I was in my special place. It helped. 

Now I can't pick up my results, and have to wait for the office visit, which this time is 8 days away. 

Maybe you could find a speical place. I liked picking up my results before seeing the Doctor. 

I hope you get good results at your Doctor's visit. Keep us posted. 

Sue - Trubrit

Sooker55
Posts: 21
Joined: Aug 2013

Well I did it, accessed my electronic record, and CEA dropped to 3.4, from 3.6 three weeks ago.  I am so relieved.  I don't know why I register slightly over normal, being a non-smoker (range for this particular method up to 3.0), but as long as it is stable, I believe all is well. But it troubles me that I have yet to hear from the doctor's office, amd they have no way of knowing that I have the results. 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I am happy to hear your CEA is down. Down is good, even by a few tenths of a point. 

I never used to tell my Onc that I had picked up my results. He likes giving good news, and I didn't want to spoil his fun. 

Can you imagine being an Oncologist. Giving out the bad news all of the time. How nice it must be to share the good news. 

Sue - Trubrit

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I totally get it. I'm having a pet scan on the 28th and I'm scared they'll find that the lung spots are cancer and maybe find some more elsewhere. I find that when I have a test coming up I get into a funk. I become cancer Jan again instead of normal Jan. Bleh...

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

That is the word I have been using. 

And my bra feels like cheese wire, and I hate it.  Yeah, I'm easlily annoyed when I get into a funk. HA!

Sue 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

What's up with your bra? I'm asking because I've had neuropathy ever since the blood clot in my feet and around my bra area. Drives me nuts. I sleep with a heating pad to distract me from the feeling in my feet.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

a gfit from the Devil. 

I guess I just want to be annoyed at something, and bras are a good thing to be annoyed at. 

Sue - Trubrit

PhillieG's picture
PhillieG
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Joined: May 2005

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Though we all obviously are on this dance, my bloods and scans are a week behind yours.  And it will all coincide with the annivesary of my surgery when I get the results.  

Seems like I am more in tune with mild aches and pains as the day approaches.  And yes, this rash of deaths in the news hits home.  I also recently saw some other people (celebrity types) with colon cancer who I "grew up with," listening to as a musician.

Try not let it grind you too much.  And when you post your good results shortly after the 27th, I will do the same within a week or so after. Laughing

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

In the same boat, scan and labs somewhere at the end of the month, always popping up in the back of the mind, had to suck it up just to call and tell them to schedule, today. I go from a guy handling his stuff for three months, to a guy waiting on a phone call that can send me down a road I don't want to go down again. Here's hoping it's all good for all of us. In the mean while, when it pops in my head, I get a little pissed, tying those fears with a little anger at myself for giving in, makes it somehow easier. I've always been more comfortable with anger than fear, a little more empowered, if that makes any sense...................................Dave

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

is when I go back to see my Oncologist.

Its a bummer too, because now I can't even pick up my CEA results. I used to be able to do that, but now I get my blood test sent by Labcorp and the results go directly to the Oncologist who is 160 miles away. 

I pray we all get to post back here in February and celebrate together our good results. 

Sue - trubrit

 

danker's picture
danker
Posts: 1183
Joined: Apr 2012

Just assume that it will be below 1.0.  Then you don;t have to worry, and the actual results may surprise you!!!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ahhhh Sue.....it's just the way it is.  Sometimes I would go into my anxiety crazies before I would even recognize it.  With a wonderful care-giver husband (16 years experience) he would finally point out to me that I was in full blown scanxiety mode.....might be a month before testing.

Not going to tell you everything will be fine......we all hear that too too often....I think your worrying about the number of cancer deaths has weighed on you heavily though Sue and you might have a touch of the "why me" blues.....why me surviving that is.

Spring and ned will come my lovely.......sending love......mags

zx10guy
Posts: 199
Joined: Dec 2013

Why are you not able to get your results directly from Labcorp?  They won't provide the test results over the phone but you should be able to go in person to the test site and ask for your results.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Its a 300 mile round trip to the nearest Labcorp. I get my blood taken by an independent, and it is forwarded to Labcorp. The results go directly to my Oncologist. 

Ah, life in rural America. It has its drawbacks, but only a few. 

Sue - Trubrit

zx10guy
Posts: 199
Joined: Dec 2013

Ok.  I see now.  So the place you went to locally was just a collection site.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I live in rural Nevada.  All of my Doctor's appointmetns and surgeries were in the big city 160 miles away. 

Sue - Trubrit

DD3's picture
DD3
Posts: 131
Joined: May 2013

luck Sue.  I'm just a caregiver and I probably have the worst scanxiety on here.  I'm a mess a month out prior to my wife annual CT scan.  Wait.  She has one in March.  Guess I need to get amp myself up here shortly.  Wink

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

just a caregiver  

you say 'I'm just a caregiver'

Good caregivers are what can make or break a patient. So, you're not 'just' anything, you are a wonderful caregiver. It is obvious by your posts, how much love and concen you have for your wife. 

Saying that, don't over worry. Its not going to change the results. Enjoy the time, and keep the worry to a minimum. 

Thank you for your best wishes. 

Sue - Trubrit

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

CT scan on a Friday, weekend, then the call comes while I'm working Mon. or Tues., however it goes I'm working happy or angry, but I'm working. It's easier that way,,,,,,,,,,,,,,,,,,,,,,Dave

sflgirl
Posts: 220
Joined: Jan 2015

Throughout this entire thing I have gone to work as much as possible, for the distraction mostly and trying to stay normal.  When I got my latest good CEA results I was working.  Got a little weepy at work, probably inappropriate but I don't care.  Hope you have an equally good event.  Will be thinking about you.

Andrea

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Just to let ya' know.  

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

My scan is this  Friday, the 22nd. Should get the results  on Monday when I see the oncologist. After  8 rounds of FOLFOX plus Avastin, followed by  28 sessions with the linear accelerator at 180  rads per  treatment and a 5-FU pump  hooked up 24/5 for most of the  five and a half weeks of radiation, we're hoping for  some major shrinkage on what  was already there and no new mets. Just got back from yoga class, so my anxiety level is pretty low and  I'm hoping it will stay down as long as I remember to  just breathe. Smile

sflgirl
Posts: 220
Joined: Jan 2015

Great way to calm the nerves.  Wishing you the best.

Andrea

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I don't think that scanxiety ever goes away. I get CT scans every 2 months and have been doing that for just about 12 years. It has gone from me being freaked out the week before my scan until when I get my results (which is the following week so it was two weeks of freaking out). As others suggest and as we all try to do, I try to keep busy.

Now I don't freakout about getting the CT scan at all. I still get a little antsy the night before I get my results but it's nowhere like it was. One can get used to anything over time I suppose...

People die every day, yada, yada, yada but when we are in the situations that most of us find ourselves in, we usually have a greater sense of our own mortality. I have found it to be a blessing and a curse. Seeing people that are public figures who we admire die from cancer or other diseases doesn't help either. It took me the better part of a week to shake off how I felt after watching David Bowie's video, Lazarus. It's certainly not how I want to go out but I realize that most likely it just might be the case.

I've had to stay off of this site for periods of time because I was getting too upset to see who we lost this week and so on. It really stinks to put it mildly. I believe that venting is crucial for us due to the amount of added stress we are all under.

I've often used the "hit by a bus" line mainly because my in-laws died in a similar fashion. They were broad-sided by a truck the day before they were coming up to visit us. They were in very good shape and were 85 and 90. We really never know...

I'm looking forward to Spring too Sue. It's the time of rebirth. 

zx10guy
Posts: 199
Joined: Dec 2013

Hi.  I had to take a pause and make sure I was reading this correctly.  Are you actually getting CT scans every 2 months?  And have been following this schedule for 12 years?  If so, why are they scanning you so frequently?  That's a ton of radiation exposure.

Cathleen Mary
Posts: 827
Joined: May 2011

Sue, I have nothing to add except having so many of us with scan anxiety does in a strange way comfort me. it helps to have others know exactly what we are talking about.

Beauty consoles...thanks for the photo, Phil.

hugs,

CM

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

There may have been some periods where I went 3 months between scans but for the most part it's been every 2 months. I've been in treatment continuously for 12 years this coming Feb. No doubt I've been exposed to a lot of radiation. I'm also alive, work part-time, kayak, and lead a fairly normal good quality life at that. I've been on Xeloda and Avastin for the past 2 1/2 years and have done many of the usual protocols. I'm headed to MSK for my treatment tomorrow morning. I'm doing 1 week on, 1 week off until further notice.

I'm being scanned frequently because I seem to keep growing small lung tumors. I've had a few (3-4?) wedge resections and 7-8 RFA's on my lungs. The only "problem" I've encountered (other than having stage IV colon cancer) was when I had radiation done on one tumor because it was too close to an artery and they couldn't ablate it. That was in April of 2014 and even though it was 3 short targeted blasts over a week, it did some permanent damage to my upper right lung. The cold weather is very hard on my lungs but I found that wearing a cycling mask helps protect me from the cold. I was aware of the risk going into the procedure but I didn't have too many options. My breathing isn't like it used to be and hiking is over. I can walk OK and do some biking. Kayaking doesn't seem to be affected by it and I kayaked a lot over the summer and fall months.

I'm unique (just like everyone else...)
Wink

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Thanks PhillieG! 

Did you take this picture yourself?  I love taking pictures. 

Thank you for your kind words. 

Sue - Trubrit

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

You are not alone.  I do the same thing. I live from test to test. I get to a place where I am feeling more like myself and then WHAM! It is that time again and I find myself not sleeping as well, grumpy for no reason, crying at the drop of a hat and a host of other issues. I think if we are all honest we will admit that this is part of what we all deal with as we survive this "thing" one test at a time. I wish it were different, I know we all do. But we are alive. 

Hugs and I will think positively on the outcome on those tests. 

MAlice

 

 

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

stiff upper lip and all that. Go to your happy place in the canyon and try to breathe, just breathe and try to forget the what-ifs. I'll be thinking about you up to and the day of your scan. Best wishes. If anyone deserves to beat this its you, you have earned good karma in spades.

Easyflip/Richard

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I really appreciate the comments, kind thoughts, advice. 

I'm actually doing allot better.

Going to YouTube and watcing videos of little children in treatment or dying was not a good idea. I will keep to sending my donation to St. Jude and leave the videos unseen. It was all just too much. 

Two weeks today I get my results. I am looking for my next NED treat. A new shirt or skirt sounds good to me.  And then in April, well, thats my two years NED anniversary. Something big and expensive to celebrate, I think. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

I like that idea of getting something and will go shop for a skirt myself Laughing  (I just wish I could do the scan now and get it over with now.  Sheesh)

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

if you buy yourself a skirt. 

I was told that I get to drink the hour drink, instead of the three hour drink' that made me happy. Still hate the IV. Hate needles. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Not sure though which I will purchase.  I just cannot find one that accentuates my legs properly.  Especially when I forget to shave them :)

Good to hear you have the one hour drink.  I do not think I have had the three hour one before, but does not sound particualrly fun.  I actually don't mind the drink too much, I get the chilled rasberry and it tastes fine (kind of like Kool-Aid)

I also have to schedule a colonoscopy.  The second way of prepping was better in terms of taste (Mirlax in Gatorade). 

danker's picture
danker
Posts: 1183
Joined: Apr 2012

I drive a Mustang since my oncologist told me to be good to myself! LOL

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

The Vera Wang skirt I purchased does not cut it compared to your choice.  Hope Macy's will take a return on this.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

They sell Vera Wang at Macy's? I'm getting one .

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Trubrit: Why'd you say 'Vera Wang and Macy's?'

NewHere: I panicked.

https://www.youtube.com/watch?v=EyFxXdqtGNk

 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Oh wow! Love Monty Python!  

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Big fan.  Have the enitre series on DVD.  And on CDs.  And Holy Grail and Life of Brian on my iPhone and iPad for emergencies, such as being in a doctor's office. 

And it just hit me with our last exchange.

(My brother is also a big fan and my niece knew all the routines by heart by the time she was 6 or so.  It is funny, because my brother and I make reference to the lines all the time without even knowing we are, and she is right there with us.)  

 

Check this out

 

http://se7ens.info/monty-python-and-the-holy-grail-that-might-make-you-say-ni/

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I'll have to share this with my 26 yr old son. He's a huge Pyton fan. In fact we were talking about this film and The Life of Brian, last Sunday. I think we're going to have to watch it when he visits next time. 

Sue - Trubrit

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

Sue,

Ive found true contentment thru the struggle by totally thowing myself and situation into Gods hands.  I have real peace . He takes away anxiety.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Sue, you are such a great support on this site. i have thanked you for your encouraging words many times in the past. I wish I had a message that would steer you completely around the anxiety that goes along with the cancer marathon. However I do take comfort in others pushing onward and learning to live in spite of the cancer cloud.  And yes I know the anxiety all too well...  For me it's CEA tests every two weeks and scans every three months. And there really have been a couple false positive CEA tests for me as well.  And I'm going in again this Thirsday. 1/28.  

So here I am, so tired today. Laying in bed and reading the discussion forum on my iPhone. And the UMHS reminder phone call came in while I'm typing....

Someone on this forum wrote that "we fight because that is what we do."  I don't know why but this deeply resonates with me. We fight because we want to live! And no matter how grim a situati may become; I hope I can fight and fight.

And part of fighting is to say NO to the anxiety. To smile. To love. To do what I can do. To live.

So cheers to you my friend.

May you continue to live as best you can. And may you find overflowing love.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

So good to hear from you, though I can tell by your post that you are weary. 

If only this disease chose the wicked, we'd have no worries. I often think, when I watch friends here and around me fight the fight, that it seems to be the best of the best that are suffering. You are amoung the best of the best, as so many of us here, are. 

Thank you for your words of strength and wisdom.  I don't know why I'm whining, when you and others are going through so much more. I'm just waiting to hear that I 'continue' to be NED, when so many of you are hoping to hear that you are finally NED. I feel terribly selfish in my worries. 

So, you and I, both going in for tests on the same day. Here's hoping we both get good results. 

Take care, my friend. 

Sue - Trubrit

 

 

janderson1964
Posts: 2215
Joined: Oct 2011

Sorry I havent been much support to you or anyone here lately. i am praying that you scans are clear.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I am the one being totally selfish and I feel completely ashamed of myself. 

Here I am, on the forum, surrounded by people struggling through chemo, radiaton, reucurrances, physical horrors, and I post a 'poor me' thread. What was I thinking?!!!

I am running a pity party for what reason? Because I want to be NED, again; ignoring those of you - well, not ignoring - but disrepecting those of you who are really suffering.

Well, I've learned my lesson, and I apologize for being so selfish.  

I thank you all for being patient and hopefully not thinking bad of me; and thank you especially supporting me. 

I will post my CT & CEA results next week and of course, I still want them to be NED. 

Sue - Trubrit

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

is thinking you need to apologize! You are one of the most up-beat, cheerful people  around, and you have been doing  a wonderful job of keeping the rest of us cheered up and offering us your support.  I appreciate all you do on this forum,  and I'm sure  there are many, many others who  feel the same way. 

 I'm  keeping  fingers and toes crossed that you have good news to report when you get your results next week. Smile

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