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18 month CT and not feeling lucky...

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

It has been just less than a year since I have posted last. At that time I met NED for my 6 month scan and felt great. In the last few months, I'm starting to feel like I did when I went to the ER over a year and a half ago for nearly the same symptoms.

Today is my 40th Birthday and it is 1AM and I'm sitting here wide awake, thinking, wondering, what if's... while my wife of 16 years and my 15yr old daughter and 13 yr old son sleep.

PLEASE LET IT JUST BE SCANXIETY!!!!

Iceman and others - I'm sure you were here at one point over the years... Sage advice is welcome! Ripper

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Anxiety is understandable - most people experience it as their scans fall due. But what symptoms, exactly, are you feeling presently ripper?

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

What a crappy helpless feeling. Sometimes I am encouraged. Others, I'm just waiting for the other shoe to fall. I get my scans every 6 weeks for a year now. Next one is this friday. This time I expect nothing but good news as I feel better now than in several months. It's too many scans but it keeps me from surprises.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

When will you have your scan results?

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Paula, Results come weds. Day after XMAS. Bad news won't spoil XMAS for me and our family. Good news is welcome any day. The past 3 weeks have been my best since early summer when the bone mets and pain began. I was able to get almost back to normal these past few weeks but I have new pain in the lateral right rib area for about 5 days. It goes into spasm and kind of "freezes" me in place for a bit. Not like when the pain was closer to my spine. Those spasms would take my breath away. Here's hoping that it is only a muscle strain but my experience tells me otherwise. Weds. is a big day in my life as a cancer patient. Scan results, infusion and zometa. My last session of scan results, infusion and zometa preceded my worst pain to date. I hope I don't do that again. Oh well. I can always camp in and watch Bowl games for awhile. No marinol here, just the first best thing...."In a gadda da vida baby"......

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I sent you a couple of PM's. I'm not sure we get notified like we used to.

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

Wedge- It's the lower back ache that goes straight up through my kidney. For the last several months the "ache" from my bladder to exit is back.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You had a scan at this time last year so I'm guessing you'll have your latest scan results in just a few days. If your aching is troubling you continuously, maybe you should see your GP meantime to consider possible other explanations?

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Let me wish you a Happy Birthday! When life events come around, I think we all take extra time and contemplate the future. This is probably part of your anxiety. It's amazing what your mind can do! My advice to you is to stay busy doing things you enjoy, today, tomorrow, and right up until your next scan. This is a one day at a time affair. Make the best of each day. You didn't mention when your next scan is happening. Is it soon? I, like Fox, have scans every six weeks. I do think this desensitizes us to a lot of the anxiety you are feeling. But I do feel if the doctor thought a scan in a year was appropriate, then you should not worry. Believe me, many of us would like to hear "NED, come back in 12 months!"

Take deep breaths, my friend. Think good thoughts and hang in there. What you are feeling is common to ALL of us. We're here for you.

Paula

HAPPY BIRTHDAY AND MANY MORE!!!!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Paula, I've always thought of you as a straight up sort of gal, now I'm worried about what this trial's done to you! Please tell me you're up-right again!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I figured Paula was just laying down on the job or resting per Dr's orders...

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I read and reread my post wondering why you were saying that about me! All of a sudden I realized what you were referring to. I tried without success to rotate that picture. It is on my desktop perfectly, but when I send it to CSN it rotates, I'll keep trying as it is actually a picture of me sitting on my headstone at the cemetery! Cheating death, I call it. It is a pretty sort of place though!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

That's "Rotate It Please" of course, and hurry, we miss seeing you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Great catch Gary! (not Paula - she was a great catch for another guy, Ed)

Siler's picture
Siler
Posts: 3
Joined: Dec 2012

I've stayed up all night, worried and been absoulutley polorized with fear. My true desire to live is at the heart of all my unstable emotions. The problem is I can't control my emotions, they seem to have a life all their own. Fear and Anxiety though seems to me to be the worst of all the emotions I go through. I live through the word and Php. 4-7 always gives me the path to peace.
Hang in there Bro.

icemantoo's picture
icemantoo
Posts: 1511
Joined: Jan 2010

Turning 40 is enough to cause anxiety in itself. As for the symptoms check them out with your Doc. Probably nothing, but be on the safeside. Only 60 years to the big one.

Icemanto

azblackmon's picture
azblackmon
Posts: 9
Joined: Dec 2012

Siler,

I saw this post and couldn't help felling that there is a familiar ring to what you share.  My husband has many wakeful nights, dozing in the recliner with the tv on, he says he doesn't want to disturb my sleep so he goes to the livingroom when the worry overtakes him.  He has been taking the Votrient and on 12/31 has the CT that will tell us if it is helping, so scanxiety is obviously the item of loss of sleep.

 I sometimes lay in the bed when he moves to the livingroom wondering if he needs time alone or if I should be there with him.  I have to work and have at times over the past few months stayed up really late several times and paid a price.  For me selfishly I want every minute we have to be spent together.  I don't try to fix his anxiety I let him know I am with him. 

The scripture is apt, and if only we could have our faith sooo full that we are able to have the scripture give us the peace it promises that the Lord "will guard your hearts and your minds in Christ Jesus."  The mind definatly needs to be guarded because dark thoughts come too often. 

Do you have an opinion of whether I should give him space in the wee hours of the dark night or be there for him?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You'll be able to support him better if you're well rested and seeing you exhausted won't do his morale any good, so keep yourself in good shape and ask him to be sure to rouse you if/when he actually feels he needs you.

Joe_fh
Posts: 47
Joined: Aug 2012

Gosh, I feel that.

I know precisely what you are saying. My last scan's evaluation day eve, I sat up all night myself, with the same pulling at my emotion strings, thinking of my kids. No amount of people saying "Chin up pal, it'll be fine" will quiet those feelings.

I am with you ripper, understand completely. Keep the positive outlook best you can and hang tough. My next scan is in March 2013, so I am sure I'll be joining the Scanxiety parade then too. In the meantime, know we're all pulling for your results.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

iceman - are you claiming you can remember what it felt like to turn 40? ;-)

Ripper, Siler and Joe - if you're so badly affected by the anxiety (which all of us probably feel to varying degrees) it's probably worth doing something about it, either via counselling or CBT (cognitive behaviour therapy from a clinical psychologist) or by using methods with which you can control it yourself. Meditation techniques are one way and close to this are mind-body practices like yoga and tai chi. There's a good brief comment on this from M.D.Anderson on their OncoLog at:

http://www2.mdanderson.org/depts/oncolog/articles/11/3-mar/3-11-hc.html

Also from M.D.Anderson is a related article:

http://www2.mdanderson.org/depts/oncolog/articles/11/3-mar/3-11-2.html

from which the following excerpt gives some interesting insights:

"Stress management

The negative biological effects of chronic stress may also be countered by stress management techniques. Very little research has been done in this area. Dr. Cohen is working to elucidate the impact that behavior-based forms of stress management have on the biology of cancer and on clinical outcomes.

At MD Anderson’s Integrative Medicine Center, patients are provided with resources to help manage their cancer-related stress, including conventional methods such as psychotherapy and cognitive behavioral therapy as well as traditional Eastern mind-body practices such as yoga, meditation, and tai chi. Research conducted at MD Anderson and elsewhere has shown that these types of mind-body practices affect stress hormones and other aspects of the immune system. “All these stress management techniques,” Dr. Cohen said, “are offered on the basic premise of trying to dampen the sympathetic nervous system response, giving the person a chance to calm his or her mind, which in turn will help get the body back to equilibrium.”

Such techniques, which can be implemented at any point of treatment, from early diagnosis through cancer survivorship, show promise in not only improving patients’ quality of life but also tempering their bodies’ biological responses to chronic stress. For example, Dr. Cohen and his colleagues found in one study that prostate cancer patients who were taught stress management skills had lower stress levels before undergoing radical prostatectomy and had better physical functioning 1 year after surgery than did prostate cancer patients who received supportive attention or standard care. They also found that the men in the stress management group had significantly higher immune function 48 hours after surgery than did the men in the supportive attention and standard care groups.

“We have a basic understanding that patients who are effectively able to manage stress in their lives are going to have better quality of life outcomes at minimum, and perhaps better clinical outcomes,” Dr. Cohen said. “One question that remains is: What form of stress management is most effective? For example, is something like yoga—a quintessential mind-body practice made up of meditation, special breathing exercises, and special movements all put together in a systematic, cohesive approach—actually better than gentle stretching exercises and some simple relaxation techniques?”

A $4.5 million grant from the U.S. National Cancer Institute may help Dr. Cohen and his colleagues answer such questions. The grant, the largest awarded for the study of yoga and cancer, will enable the researchers to determine the benefit of incorporating yoga into treatment plans for breast cancer patients. Documenting the potential psychological and biological rewards of this and other types of programs in a rigorous scientific fashion is essential to changing the standard of care.

“Stress management needs to become much more a part of the standard of care,” Dr. Cohen said. “It’s not that all patients will be required to undergo stress management, but it needs to be something that is offered up front and that health care professionals encourage patients to participate in. And it needs to be made available across the cancer care continuum, from early diagnosis to long-term survivorship.” "

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

Wedge,

Although the advice and links are respected. Sometimes complaining blindly online is enough. The scanxiety is a result of BDay, XMas, CT and any other accronym.

My answer = Golf, Vodka, Football, and a lot of work will do the trick.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

ripper, I hope your formula is right for you (mine = golf, whisky and wine, rowing and as much of everything as I can pack into the day and I haven't lost a single night's sleep to anxiety ever since I first figured I might have cancer). However, even tough guys can be anxious and if your formula turns out not to be enough, you might want to think about the suggestions in my previous post. Hope that's not necessary and good luck with the scan on 27th (to you and "tough guy" Mike). Have you had that back pain checked out yet?

Joe_fh
Posts: 47
Joined: Aug 2012

Your post is sensible, logical, well researched and probably right on target.

... but, and don't take this the wrong way Wedge, all that "sense" doesn't amount to a hill of beans when you are gripped by the fear.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's true, but you will get through that panic attack.

THEN, knowing how badly it's affecting you, it's time to do something to help to spare you from going through it again in the future.

I'm under no illusion Joe about it being no help when you're in that icy grip, but it seems to me to make sense to do one's best to head off, or at least lessen, further bouts - don't you agree?

Joe_fh
Posts: 47
Joined: Aug 2012

Yes, I do agree Wedge. I was merely pointing out that sometimes, the words are easy. You may have nerves of steel, but many of us do not.

Still, nothing I said distracts from your post, and the wise would read it and consider the recommendations. I am trying to get my concerns under control, and make some progress, I am just not always successful.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Ripper,

I can't offer anymore than the rest here have already said, but I just wanted to wish you a happy birthday and God's blessings for many, many more.

Blessings,
Lisa

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I get an extra bonus i get my bladder scoped on the 27th which is a procedure which keeps giving for the next 24 hours or so,i try not to consume any fluids unless i get real thirsty.Hey Ripper one thing i have noticed since i have had surgery is that even us tough guys notice every pain and ache in our bodies after being told we have cancer with that voice in our heads telling us it must be really some bad news so try not to think about it to much but at the same time do not ignore anything who knows 99 percent of the time its nothing to be concearned about.

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

Your comment about the "Tough Guy" mentality hit home. By the way, my CT is on the 27th and I'll be thinking of you. I grew up in a copper mining town, been shot at twice (Montana by the way, go figure) played college footbsll, and "manage" 100+ employees. I've been through it, lived it, seen it, felt it, and dealt it. I'm just not able a shake the feeling...

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I get mine tomorrow. I think it is my 9th this year. That does not count the ones before my radiation visits. Add another 9 of those before radiation. That makes at least 18 in 2012. That also doesn't count the ones prior to getting in the MDX study in nov. 2011. I feel real good going into this one, so my fingers are crossed for good news. Results day after Christmas.

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

The aches and pain fade when you know the reallity of others. God Speed and I'm done whining! Have a Merry XMas and New Year!

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

The aches and pain fade when you know the reallity of others. God Speed and I'm done whining! Have a Merry XMas and New Year! My fingers are crossed for you as well.

Wolflvr's picture
Wolflvr
Posts: 14
Joined: Dec 2012

I wish you both the best of luck and you'll be in my thoughts until you know your current status.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

ripper the strong man is back - nothing like hearing what some poor souls have to bear to jolt one back into a proper perspective, is there ripper? There always seems to be someone much worse off who puts us to shame with their courage.

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