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Anniversary and Scanxiety

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

My three year anniversary of my diagnosis and nephrectomy are fast approaching. I don't hang out here as much, mainly because my work has become increasingly demanding so I don't have time to browse and reply like I used to.

Three years ago I spent Thanksgiving looking for a surgeon to remove my kidney after spending time in the ER getting a CT scan due to red urine. I've been fortunate to have had excellent care. Turned out to be Stage 3 (results came as I was driving to Vegas between Christmas and New Years that year). I had still been hoping for some kind of benign cyst. Last January an early scan (pain on my right side) found a tumor in my adrenal gland and had that removed in February. I'm now on a 3 month CT scan schedule. In about 10 days I will have another scan.

I keep hoping that I'll get a really long stretch of NED and can put this cancer behind me. I hate that feeling of waiting for the other shoe to drop. Even though I know it doesn't help to feel/think that way, I find it impossible not to do it, particularly when a scan is approaching.

At least I can come on here and read your stories and write and know that there is a place where people get it. Unfortunately, friends/family don't get it at all. They've all moved on. I haven't.

When my cancer returned, I told my boss I wanted to work less. He agreed. Then because our group was running out of work, he asked for more work from his boss. Next thing I knew I was being asked to take on 3-4 times the amount of work. Then they wanted me to hire 2 people to help me and all of a sudden I'm managing people for the first time in my life. Honestly I hate it. It's terribly stressful and I worry my cancer will return because of the stress. I've considered finding a new job, but I also know it can be hard to judge the stress of a position when interviewing for it. It's not something they tell you about in the job interview usually...

Wishing you all a peaceful and healthful holiday season. I'm sorry I don't come on here as much to support new people. I do miss seeing all of you.

Best wishes,

Todd

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I totally get the kowing that anxiety and stress aren't productive yet we do it anyway. Unfortunately it's hard to make our emotions in sync with our intellect. Add in the extra work load caused stress to the scanxiety and it's not suprising you're not exactly in a happy place. Keeping you in my thoughts and fingers are crossed hoping for really good news and a NED report. Hugs!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Todd, be careful what you wish for.  As I always said in our office when we were overworked, the alternative, being out of work, sucks.   After my partial nephrectomy and an otherwise trying year, I kept saying how I wanted to work less and enjoy life more. Reasonable goal.  Well, I got my wish.  We lost our largest client this year, and our workload is drying up.  I am looking ahead to having very little to do in December, and I get paid for billing my time to client work.  Looking at my take home as an owner being cut in more than half.  Now I am wondering if the stress of being overworked or the stress of having to figure out who we will lay off first is worse.  Neither one is fun.  Hope your work calms down.  We all want (and maybe deserve) balance.  Maybe I will find it, but the see saw from one extreme to another has not been real fun.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

OH Positive_Mental, I am sorry for the anxiety and distress you are under at this time.

May you always be so employed with the fulfillment of of your work~

Sending hopeful thoughts to you now.

Jan

APny's picture
APny
Posts: 1987
Joined: Mar 2014

PM, hope you find that perfect balance. Stress sucks either way; be it caused by too much or not enough work. Wishing you and Todd the best both in health and in business.

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Todd, wish you a NED scan. 3 month scans suck, too much anxiety. On the other hand,they are great, because this frequency won't allow anything to grow too big, if recurrence happens. But as we've seen with others here, a single met does not necesseraly mean it will be a regular thing - you can hope foR NED for sure!

And as a caregiver, I must say that it is not 100% definite that your family and friends have moved on. Maybe they are just prerending they did? Pretending for your sake, to show that they fully believe that cancer story is over and you'll be allright? To show they are confidentin your future, to help you? Because they care?

I think I would be doing smth like that, with good intentions.

Anyway, let's prepare for Uncle NED visit!

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Todd, keeping you in my thoughts and prayers for a successful scan.

Please be sure to keep us posted.

Hugs and happy wishes,

 

Nancy

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Todd,

14 months ago when I joined this board, you were one of those who helped me a lot so I'm thankful and I think you don't need to feel sorry for not having  free time to post as much as you did . but finding a new job with less stress is a great decision not because of your history with cancer but because it's healthier and better for our soul and body. I always thought my hubby moved on right after the neph but now after 15 months I'm not sure, as Ella wrote I think my hubby pretends he's moved on to give me confidence ,I'm not sure but it's funny, he  keeps  telling me that it's history,it's finished,it's impossible that it comes back! But when I have a simple cough, he immidiately comes to me if he was in another room and tries to look calmed dawn and asks me if I'm all right? And kind of stares at me with stressed eyes and fake smile until the cough is finished, when I ask him are you worried the answer is always no honey! What should I be worried for! But I know what he worries for but never says it and does his best to look like a relaxed confident moved on care giver. :)

you are in my thoughts and prayers, and I'm waiting to have you NED post

Happy holiday season

Forough

 

 

 

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

It's good to have news from you!  Wishing and waiting to have you posting your NED news in the next few days!

Dembel
Posts: 32
Joined: Jul 2015

Hi Todd,

Still only about 5 days to go now.....and I wish you NED! Your story is similar to my partner's story, and the balance work/life is extremely difficult, for all of us. Now that cancer is "in the house", not even in my body, I want more free time, less stressful job since now I'm managing a group of 27, and hey, life can be over in a second (more likely if I get hit by a bus than anything else, but ok). My partner, stage 3 RCC, but NED on last scan in October, has come to the conclusion that work saves him.....complete nefrectomy end of June, and 6 weeks later back to work full time, and now working as I have never seen him work before. On the other hand, he doesn't speak about the RCC at all, and if the conversation goes that way he pretends not to understand, and then he says "oh that little thing".... So yes, hard for the environment to know to what extent it is ok to move on, and where we need to still give support. Anyway, RCC is still in my head, and will be for the rest of his life.....e.g. I'm not booking this holiday to Italy for next July....no way..... The days before scan are the worst (we didn't sleep for 2 complete nights....both of us).

So.....head up, be careful what you wish for, enjoy work (people management is like parenting, you don't need to do everything right the whole time, and try to feel relaxed when you feel like below, it's normal :-)

Afbeeldingsresultaat voor people management is like

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I dont know about people management but the best book I've read on classroom management was "how to train your puppy"

Be clear in your instructions and expectations

Reward rather than punish.

Dont try to impose your authority by bullying

Be feared rather than loved Oh no thats Machiavelli! He's good but not as good as How to train your puppy

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Not sure I can use that approach, nor sending my employees to the office for a swat. We don't do that anymore, do we?

My second grade teacher had a large, wooden paddle with flowers painted on it and the words "Flower Power". Weren't the 60's wonderful?

Todd

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Great picture of what it feels like. I'm starting to get used to it a little. It's actually kind of nice at times to have people I can ask to do something/help me out. I'm finding discussions are not so bad after all and certainly needed. Communication is vitally important and not judging too quickly.

Thanks! Italy! That sounds like fun. Where in Italy will you go? I've been to the north a couple of times. Never been to Rome or the southern part but would like that.

Thanks!

Todd

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Appreciate the encouragement and advice. My scans are on Tuesday, the 8th. But I won't get results until Wednesday the 16th, the day before my 54th birthday.

Of course I'll post when I know something. My doc promised to let me know earlier if it's something important via email. I'm not so sure I want to hear important news via email...Good news via email would be fine though.

Todd

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Last year my first post surgery scan was a couple of days before my birthday and I received the result the day before my birthday. The NED  report was my best birthday gift ever, here is wishing you the same birthday present

Forough

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

My scan is tomorrow. Woke up this morning and could barely walk. I've had a pain in my foot for many months. When it started I went to a podiatrist and he xrayed it and didn't see anything. He thought maybe gout. I told my family doctor and he did a blood test for gout which was negative. It's just been hurting for months. I assumed it's arthritis/old age and just let it go. Literally forgot to mention it the oncologist. He tends to really not care about things that aren't cancer or aren't "likely" cancer. Last time I mentioned some problem I was having after a clean scan he smiled and said, "Well, I know it's not cancer." Really pissed me off, actually. I said, what about the organs you guys keep cutting out to treat my cancer? Could it be that? He said to talk to my family doctor about it.

Anyways, decided to email him about it this morning. Maybe they'll scan my foot just in case. I think it's unlikely to metastasize to your foot. Right? I keep wondering about stuff like this. I know it's not good for me to visualize bad outcomes, but it just happens. I don't stay there or keep at it. I redirect myself when it happens. Still, an image will pop into my head and I'm wondering what it will be like telling person X that my cancer is back. Or I'll see myself in a hospital bed dying of cancer and wonder what that will be like...I'm sorry if this upsets anybody, but I can't think I'm the only one struggling with this. My mind just creates this stuff all of a sudden. I immediately tell myself I don't know it will happen or if it will even be as bad as I think, etc. I make myself stop it. Sometimes I even spend some time thinking of something more pleasant/opposite of this.

Another thing...

I've been thinking more and more about where all the money goes that people donate to cancer causes. Where does it go? What gets done with it? Instead of throwing it all at research, perhaps we could spend some of that money helping people that have cancer? At this point, I'm not doing too badly. However, I do live alone. My family is in another state and I'm somewhat distant from my sons and ex-wife both in terms of distance and relationship status. I start to realize how isolating disease is and wonder if I get sick who will help me get to the doctor, clean my house, feed my dog, etc. I can well imagine there are sick people with our disease that need help with these kinds of things. Does any of all that money that goes to cancer causes get funneled into actually helping sick people with transportation, cleaning, daily living? I sure hope it does, but I don't think much of it does. I don't recall each of the times I've been in the hospital being asked if I need help with any of these things.

I'm finding it very hard to work today. My mind is on this. May not make much progress in my job today. Oh, well. :)

Peace and love to all of my RCC friends.

Todd

APny's picture
APny
Posts: 1987
Joined: Mar 2014

You’re not the only one struggling with those dark thoughts. I call them mind movies. They hit me hardest when I wake in the middle of the night and can’t fall back to sleep. But there are other times too. For instance, my latest blood test shows that I’m once again anemic and iron deficient. So naturally I’m thinking the cancer is back. Like you, I don’t dwell on it or fixate on it but yes, these thoughts do go through my mind. I hate it and it’s frustrating but there it is. Just part of the new normal.

The day before scans is very stressful and anxiety provoking. I hope everything goes well for you tomorrow and you get the coveted NED report. It sucks that you have to wait so long to get it. Is there any way your doc could speed it up? Hang in there and I’m keeping you in my thoughts! Hope your foot is better xo

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

Hi Todd,

I feel your pain, I really do. Not only do we all worry - the scanxiety - but I am sure many of us have travelled down to the dark pit whenever there is an ache or pain. The dark pit/mind movies (good term, Andi!) do run through our head - why? Just to make ourselves feel that - in our minds, at least, we are right? After all, we know our bodies the best.

Right now I am worried about the nodules in my goiter that have grown considerably. As is a regular turn of events in how things go in my life, my appointment request for a biopsy got lost in the shuffle, and as a result have had to wait 5 weeks for this appointment. I finally go this Friday. In the meantime, I feel everything is grown even more and it is affecting my swallowing and breathing. My oncologist did kind of worry me a bit when he told me that RCC is the leading primary cancer to mestastasize to the thyroid - though uncommon -  even more anxiety for me.  And, although my family doctor is decent, I am tired of everything turning out to be nothing (even though that is good news - but there is discomfort, pain - I am not ME) - plus I have a real problem just performing the act of calling the doctor. Then I start wondering if people think I am a hypochondriac! Sometimes I think I AM a hypochondriac!! But I must admit that I have had some mind movies going on in this messed up head of mine. Really, though, just knowing that there are others here who feel the same way gives me reassurance.

I will be thinking of you, tomorrow Todd - and holding my breath along with you waiting for your results. And I also just turned 54 the first of December! And my sister shares your birthday - but she is turning the big 60! Hang in there, sweetie!

Hugs

Jojo

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

My cousin just had a benign thyroid cancer. I think it's a fairly common problem. Hope it turns out to be a very minor thing.

Hope you had a happy birthday. Keep us updated on the biopsy result. When will you know?

Todd

P.S. If I hadn't had RCC, I'd consider myself a hypochondriac. Once we've had this, I think we deserve to get a pass being a little vigilant on the health front. It's completely understandable we are concerned about our bodies. So give yourself a break. It's ok to be concerned.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My doc said it was a fairly common effect of the anti cancer drugs

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Todd,

I pour myself into my software projects.  I'm developing free open source software to predict wildfire behavior (wildfire-management-tool-web).  I'm trying to bring these projects to fruition while I still can.  My mind wonders when I'm not working.  If I can't sleep, I get up and work.  [what a motivator, eh?]

I hate being reminded of my condition.  Limiited physical energy and not being able to recover after exercising due to my "bio-chemically deconditioned" state is always a reminder and it really ticks me off.  [done ranting]

I hope you find some peace of mind or something to occupy your thoughts. Music is good distraction, either playing or critical listening. Or an XBox. :-)

-- Bruce

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Very interesting looking application.

I've been thinking about the Xbox! I haven't played video games in years. Might be a good time to get one.

The last times I tried to exercise pretty hard in earnest, I got sick. Light exercise is ok, but I just can't seem to do heavier physical activity anymore. Not sure if it's age or if it might be the missing kidney and missing adrenal gland. Even though they say we are ok without them, I think our bodies kind of are designed to have 2 of them for some reason and it wasn't just for spare parts. My theory is that they don't understand the effects of small changes like this. Measuring things at this level in our bodies is incredibly complicated in such a complex, dynamic system as our bodies are.

I have to wait until I'm home to watch your link. Can't do it from work. :) I'll have a look tonight. Thanks for the ideas.

Todd

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Todd: Fellow software developer. I'm sure you've been in meetings like this: The Expert (Short Comedy Sketch).

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Todd, thinking of you today!

Jojo, happy belated birthday and may your present be a visit from Uncle NED after your biopsy. Just a thought that might help: I was reading that fewer than 1% of thyroid nodules are cancerous and these nodules are  very common. Of course since we had RCC everything we have gets filtered through that and it’s first thing they think of. I’m keeping my fingers crossed that it’s just a harmless nodule and a sheer coincidence that you developed it. Even if worse came to worst and it’s a met, I think it’s very curable by removing it. But I don’t think it’ll come to that.

Love to both of you,

Andi xo

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

Todd

Have you contacted ACS in your community?  They are supposed to have a budget for things like home visits, transportation, friendly visitors.  And yes, a big percentage of the funds raised go to grants for research.  Another big chunk goes to education about what causes cancer (and lobbying against smoking, etc.)  Then there is the advertising!!!!  Many of us who participate in the local Relay for Life asked about all the incentive prizes, certificates, and on and on.  The response was that there are many out there who would not donate at all unless their company name is on a board, or they get a water bottle with a logo on it.  Go figure.

What you need is the physical and emotional help and assistance,  NOW.  I don't know the size of your community, but:  There are local Cancer Support Groups that are inclusive for survivors (that's anyone who has been diagnosed and sometimes their support people).  Home health could be contacted to provide medical assistance.  There are various job skills training programs that employ people- they can clean house, shop, provide transportaion and other needs on a sliding scale for the user.  Do you have public transportation or Dial a ride in your community?  What about Sr. and Disabled Services---usually something that is part of a State program, by whatever name they call it.

Is there a Palliative Care program thru your Oncologist; or as a part of a Hospice Provider?

I hope this helps you put your thinking cap on about what is available to you.

And to JoJo

More good luck.  Get the biopsy over and deal with what they find.  You can live without the sucker and take pills.  The worst part of the biopsy is when they have your head bent over a pillow, the ultrasonographer is pushing on on the gland trying to locate what the Radiologist is supposed to find, the saliva is accumulating in the back of your throat ready to drown you, and they say DO NOT SWALLOW.  They need to use one of those fluid suction devises like at the dentist.

Hugs to both of you.

Donna

 

 

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Hi Donna,

Thanks for the pointers. I'm (thankfully) not near that point yet. I was thinking more about others (or hopefully not anytime soon, my future). My county is one of the most conservative and less friendly (towards poor people) counties in all of California. There is very little here in terms of support. I found a pretty good support community but they are in Los Angeles or Pasadena, an hours drive away.

However, that being said, I probably haven't looked hard enough yet because I'm not at that point. Gratefully I can drive, work, etc. It's just the old stinking thinking on my part at this point. When I was sick in February, my (oldest) son and his wife were quite helpful. Even though my younger son is not talking to me, I'm pretty sure if I had a real need and asked directly he'd come help.

Very much appreciate the ideas and support.

Best wishes and hugs,

Todd

 

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