Does time play on your mind?

[pstolarski]

I am sure everyone has something to contribute here so chime in.

I am almost 9 months post chemo, and have my port out. I’m 17 months post DX for colon cancer. My last scan was in July and colonoscopy in April. Scan was clear and I was told not to come back for 3 years on my colonoscopy. I just had my quarterly checkup for blood work. Hemoglobin was at an all time high for me 16.4, WBC was just below normal on the low end and has been up and down between 2.6>4.0>4.1 – last time 3.7. My CEA dropped from 3.7 to 2.5. All of this looks good but I still have this nagging feeling. I have had indigestion lately from mild to enough to cause me to take Prilosec. I have had some right hip pain (note signature) lately and it seems like my bowels have been louder than normal and I have had some stomach/bowel cramping. I have had some back aches/cramps that at times are enough to make me cringe.

I see a lot of comments on the board about the “crap or gas” game but fortunately I don’t have that problem. I do however find myself constantly looking at my stools after I go. I think it is kind of like trying to read the tea leave in a cup of tea.

I’m sure everyone here feels this way at some time or another but how do you handle this and at what point do you start believing that it’s just normal and part of aging, pulling some muscles or something you ate? I have put on some weight since chemo, 15+ pounds but I was not very big to start with and lost a considerable amount of weight from surgery. I think I am back to a normal weight however I must admit most of the weight came back and landed in my mid-section – funny how that works.

I really want to believe that things are back to “normal” but since this whole cancer thing it just plays with your mind and at times your confidence is just not what it used to be.

Thanks for listening!

[BrownBagger]

I sure get that all the time--aches & pains, etc. I think is something you have to learn to live with or it will slowly drive you nuts. Long-term cancer survivors tell me that the longer you go without a recurrence, the less you worry that it will "come back."

[weisssoccermom]

It takes time - lots of it - to start to 'settle down' and stop worrying about every little thing. The reality is that we forget that we get muscle aches, upset tummies, etc. from time to time and it's not uncommon. What you have to be diligent about it watching out how long a symptom truly goes on. If, for example, you find that you have indigestion each and every day after you eat - then you should talk to your doctor. It may be something like an ulcer or even the beginnings of gallstones. Remember - just because you had cancer doesn't mean you can't be dxd with this other 'common' problems as well. If you're not taking a probiotic - you might want to try one as many times they help immensly.

As for when do you start 'living' again and quit worrying - that's different for each person. Me, I'm almost 4.5 years out from diagnosis and I still worry a little bit sometimes. I've gotten over the having to go to the bathroom everyday or else something is wrong. I've stopped fretting if I don't go to the bathroom at the same time each day and finally, I've stopped (for the most part) checking in the toilet bowl after each BM. Cancer isn't my whole life anymore - the further away I get from my diagnosis date - the more I tend to try and put it behind me. I know that I have (and have always had - a genetic thing well documented within my family) an overly acidic stomach and that it has absolutely NOTHING to do with my cancer diagnosis. I realize that if I forget my Nexium, I pay for it and that it doesn't mean my cancer is back - it's just ME - an individual with a medical issue.

For me, as each day passed and as each year has passed, I've felt more and more confident about putting the whole cancer thing behind me. In my case, once I hit that two year mark (and not from my diagnosis, but from my last treatment), then I started to 'let go' a bit. The stats are pretty clear that IF you're going to have a recurrence it will likely recur in those first two years so for me that 2 year mark was a huge sigh of relief for me. Of course, I am still diligent and get my checkups, etc.

Keep hanging in there. Take this one day at a time. I know it's not easy to just put this all behind you but try and find something else to take your mind off of cancer - if only for a little while. With each passing day, you'll find that this 'exercise' becomes easier and easier - without even thinking about it.

Take care.
Jaynee

[Terry]

My body hasn't been normal since I started down this road. R hip hurts when I walk and locks up which I think is from the radiation. I look at my poop every time I go to make sure it's not thin or bloody. What your feeling is normal. I don't know if you'll ever get over that completely but in time I'm sure it will be less. Give yourself that time, probably a couple of years. There's nothing wrong with you, it's normal to worry after everything. And yes, unfortunately some of it may be due to again. Getting old sucks but it beats the heck out of the alternative!

[Bev G]

Of course we are all "equal" on this board, but I do think in this regard, the answer to the posted question has a lot, or nearly everything, to do with stage. It;s not a contest with regards to who has the most anxiety, stress, terror or fear, but I think for those of us who are stage IV, we probably don't ever go down that road of "putting it all behind us". Ask me in ten years, if I'm still around. I hope and pray I'll be here to give you a different answer.

Love you all, Bev

[chrissyrice]

Of course we are all "equal" on this board, but I do think in this regard, the answer to the posted question has a lot, or nearly everything, to do with stage. It's not a contest with regards to who has the most anxiety, stress, terror or fear, but I think for those of us who are stage IV, we probably don't ever go down that road of "putting it all behind us".

That says it all! We are all on a road to somewhere - cancer free, pain free.

[pstolarski]

For all you Stage IV out there I considered when I posted this how you would take this. I certainly understand that you may not be able to see this from my eyes, but I think there is some kind of normal you are hoping for and a way to cope with what you are feeling. I know it may not be the same but I know you hope for some form of "normal" as well.

[chhooks]

Can't speak for other stage 4s but for me... Right now at the halfway point of folfox, it seems that normal will never come back... Many days I get the feeling that I am running from someone with a gun... Hopefully this will dissipate... I do have faith in the Lord that He heals and protects... but like one of my favorite verses says, Lord I believe, help mine unbelief!

The waves are taller than I and I cannot see the end... but I know that I am going somewhere...

[chrissyrice]

For all you Stage IV out there I considered when I posted this how you would take this. I certainly understand that you may not be able to see this from my eyes, but I think there is some kind of normal you are hoping for and a way to cope with what you are feeling. I know it may not be the same but I know you hope for some form of "normal" as well.

I sure didn't take it the wrong way and really understand your post as I am living the same fears and emotions as you. When it comes to this part of the journey like you said we really want our old "normal" back. No health issues, able to rest and stop checking our POOP!

Your post really helped me, as well as Bev's post. To just simply see that once I experienced the evil of cancer in my otherwise healthy body, that for me I have to move on down this road to a "new normal".

So to keep it fun -- I decided to stop checking my poop this week! Now what I am I going to do with all that extra time on my hands?

Chrissy

[CRguy]

Now what I am I going to do with all that extra time on my hands?
Chrissy

Don't know, but infinitely better than poop on your hands !

I'll throw a slightly different take on the "old normal / new normal " thing : my OLD normal was when I felt OK but was actively growing what would eventually be Dx'd as a Stage IV cancer. No frakkin' way I want that old normal back...ever.

What is new normal ? What the heck is even normal at this point ??? Don't really know so I have decided to focus on what is, expect changes and keep putting one foot ahead of the other...and try not to fall on my face !

So Far So Good !

Cheers
CRguy

[johnmeissner]

I don't know if it's "time" that plays on my mind, but rather just the reality of having been diagnosed with cancer of any kind. I was DX'd stage one and surgically cured 4 years ago, but have had several "scares" since then.

Every little twinge gets me to stop and wonder "Huh?" I still deal with pain in my colon, constipation, and yes, weight gain since my resection. And I do check my "uh-uh" everytime I go, as well as the paper, before I flush. I expect I'll be doing that for quite awhile, if not for the rest of my life. And as far as indegestion, or acid reflux goes, that is one of the things that actually ended up saving my life, as that was one of the symptoms that got me to go to the doctor, who subsequently ordered a colonoscopy, because "You're that age." (I was 51 at the time.)

Someone on this board much wiser than I once said that what we shoot for is a "new normal" and the "old normal" never returns. That's okay with me. As long as I'm here to watch my two-year old grow up, I'll take any kind of normal I can get.

[mm66ny]

I don't know if it's so much time playing on my mind from diagnosis, but it's more of time playing on my mind into the future. Since being diagnosed with cancer and still being early out of the gate from the end of treatments, I often find myself thinking in terms of "will I live long enough to . . ." whatever.

I have been reading this book that contains many biographies, each listing the birth and death dates of historical figures: Galileo lived from 1564 to 1642- he was 78 when he died (feel free to correct me if I screw up the math); Aristotle, who lived over 2000 years ago, lived to the ripe old age of 62 (Ok, that's not so old! but it seems like it now!); Isaac Newton lived from 1642 to 1727, and was 85 when he died. Will I live as long as any of them? or will cancer catch up to me first? Will I live long enough to see any of kids' children? Will I make it to be a grandparent? Will I live long enough to walk all of my daughters down the aisle?

So, in terms of whether "time" plays on my mind, it does insofar as I try to imagine a future with me in it.

[ranger]

Thanks for posting about this! I feel pretty confident that I'll stay healthy, but when I feel fatigued, I worry whether "it" is back.
The 2-year mark will be big for me too. Once, waiting for scan, I met a woman who told me hers came back at about 2 years.
My oncologist encourages me: when I asked, "does my chance of survival get better after 2 years?" he replied, "your chance of survival improves every single day." I like that!! Some of us get treated and stay well!

here's my cartoon about fear of recurrence.
http://cancerissofunny.blogspot.com/201 ... worry.html

my blog home page is:
http://cancerissofunny.blogspot.com/

i hope my humor and lightness of heart doesn't offend or upset anyone. if you don't care to joke about cancer, please ignore my blog!

yrs,
AMY

[van34]

Hello,

Remember, your body has been through A LOT and it won't ever be quite back to your old "normal".
I myself changed my diet drastically after chemo and found that I am able live with my new normal very well.
I've completely cut red meat out of my diet. It was hard because I absolutely love cheeseburgers, but the bloating, gas and difficulty digesting it overrode my desire to ever have one again.
I've also cut out foods that usually cause gas (eggs, certain fruits and vegetables... carbonated drinks) and can honestly say I my digestive tract has never been so good to me
Try eliminating certain foods from your diet - speak with a dietitian to ensure you are still able to get your proper nutrients without them. You will be amazed at how much better you feel.

On a positive note - chances are you are not experiencing a recurrence, but I completely understand the anxiety and worry.

I have been 1 year out and am about to journey back into the hospital to get my blood work, scans, colonoscopy and (hopefully) have my mediport removed. I always get extreme anxiety this time of year as the uncertainty and worry slowly begins to creep in. Last year when I received my NED (no evidence of disease) it was like I had a new chance in life and was the happiest I had been in years. I'm praying God gives me another year of peace.
I do know that despite any efforts I partake in ensuring my cancer remains in remission, there is always the chance it will come back. While it has taken a lot of support, soul searching and faith, I believe that whatever my scans and colonoscopy show - I will be ok with the outcome either way.
We're survivors. Always remember that. We've been through the worst trauma - hearing those words "you have cancer" and we're still here. Rejoice in that and you will find you have more strength and courage than you could ever imagine. Never EVER give up hope.

Not yet out of the woods, but everyday we get closer to that clearing

BTW - I'm Vanessa and am Miss April in the 2011 Colondar. It was the best experience I've had since I began my cancer journey. For any of you thinking about applying for the 2012 - I say go for it! You will love every minute of it - I know I did.