Thursday, April 21, 2005

Fear and Worry: a thread of conversation

On 3-28-05 Vince wrote:
After this post you will know me better then my own Mother...
Does this happen to anyone on the list? ----Generalized Anxiety Disorder (GAD) is one such type of anxiety disorder in which a person typically has vague feelings that something bad is going to happen. Excessive or unrealistic worries often are so persistent and uncontrollable that the individual cannot make them go away and has difficulty concentrating on daily tasks. Chronic and excessive worry most days for at least 6 months about events that are unlikely to occur is a key characteristic of this disorder.
found this at
On 3-29-05 Vince added
You name it and I'll worry about it. If I don't have something to worry about I will come up with something. If it's not this it's that. In the end I don't really have anything to worry about at all at this time. The first step as I see it WITHOUT a Xanax pill is to recognize what is happening. That helps. Most people can't see something is going on and that you have the ability to change the face of things, that is once you see something needs to change.
on 3-28-09 Jani wrote
Vince: Considering the boat we're in, it would be unlikely that any of us DON'T experience generalized anxiety! I'd be worried if someone didn't have some anxiety! I could answer yes to 11 of 14 of those questions on any given day! Anybody else? Be blessed!
3-29-05 Mel wrote|:
Hi Vince and Listmates:
Bless you, Vince, for bringing up our four-letter "F" word. I'm talking about Fear, not that other one. And think with me about that a minute. Just as we need a longer word, a more politely mumbled mouthful, like fornication for the other F word, we seem to need even longer words like Generalized Anxiety Disorder (GAD) and Post-Traumatic Stress Disorder (PTSD) to describe such a basic, four-letter, and essential human function - like fear. And make no mistake, fear is a function, and an essential one, as I shall try to explain. Fear, like pain, one of our alarm systems.

I don't have time to write you a lengthy treatise on fear this afternoon, or go into all of the professional theories there are about anxiety. My own thoughts about my own anxieties are all that I can offer you as a fellow GIST patient. So let me share some of them briefly for what they might be worth, and hope that our Listmates will join in and offer you their personal ideas and thoughts as well.

Unlike the other F word, there is no such thing as avoiding fear through celibacy. We have to live with, and deal with, our fears each day. Fortunately, many of our human fears are dealt with automatically, it seems, by our well-known psychological defense mechanisms against anxiety. These automatic defense mechanisms are kind of like an emotional immune system which helps to contain our anxieties while we go about our daily work. The defense system seems to shield us from looking into ourselves without special help or effort - and keeps us calm through such self-protective and well-known psychological tricks as denial, repression, projection, and rationalization, for example - as well as other, quite fascinating, and very
human defenses against anxiety.

We cannot live without fear. Fearlessness should not be confused with bravery. The fearless don't live very long, even with luck. If there were no such thing as fear, fearless people would soon be walking off cliffs, fearlessly flapping their arms like ducks. Even animals have more sense than that. (Maybe because we are so bold and have seemed so often to lack the common sense of other animals, Nature has perhaps needed to equip us with more extensive mechanisms than those of other animals for handling our fears and anxieties. Why not? Who else flies to the moon?)

Appropriate fear is protective - a signal that something is, or might be, wrong - a sudden or lurking danger might be threatening us. Without that danger-signal, fear (and seemingly some recurrent good grace or luck), our vulnerable human species would not have survived - and still might not, may I add, if we lacked our supporting anxiety or emotional "radar systems", and completely ignored our perceived fears and circumstances..

If we, or those we truly care about, have GIST, and we do not have more than a bit of anxiety, one must wonder if we really know the score. If you do know the score and still don't give a damn, then one might wonder if you are suicidal, or perhaps may feel that you've made some special deal with a higher power.

All kinds of people have all kinds of personal and often hidden defenses against anxiety - from repression and denial to rabbit's feet. Many of the weirdest psychiatric symptoms and obsessive-compulsive behaviors are essentially second line defenses against anxiety, after our normal psychological defenses no longer suffice. In addition, some people discover that their nagging discomforts, fears, or Generalized Anxiety Disorders, are alcohol soluble. That kind of chemistry offers a convenient but increasingly costly and dangerous cure. As it becomes increasingly habitual and obligatory, however, that cure costs us our freedom to think more clearly about our circumstances and problems. So it is also with many of our symptomatic behaviors, as well as our common superstitions which are really a culture's way of dealing with anxiety.

We each make small daily sacrifices, so to speak, to ward off our anxieties, and our nagging anticipation of evil, or bad luck. It goes, in part I think, with the dilemmas of our unique human awareness of our pending or inevitable mortality.

We don't want to look. We close our eyes to go to sleep each night. Some of us keep our eyes closed, or at least averted, during the day as well, for fear of fear itself - the boogiemen of our ubiquitous anxieties. We give up our freedoms to look, and to ask questions, in exchange for little bits of security and assurance that all is well. It is disheartening to see how frightened people are ready to give up "a little bit of freedom" in exchange for the promise of protection and security by a "strong leader" whom power inevitable corrupts, as it seems.

This willingness to be accept restrictions for the promise of diminished anxiety, is deeply embedded and widespread in the more primitive aspects of even our modern culture. For example, it is both telling and amusing that for fear of tempting fate, we forego the privilege of walking under ladders. How easily we give up a bit of freedom or choice of where we walk, for the potential gain of warding off bad luck. We really are quite a tribe, aren't we?

Vince, unlike booze, your vanilla cokes are just fine - and even in excess, better than too much wine. Your fear is appropriate. There are reasons for it. You are not some nut who cannot figure out what is troubling you, with or without some help or therapy if need be. Until proven otherwise, that simplistic check-list you posted and a glib diagnosis of GAD that someone may have given you, do not in themselves mean that either you, or your fears, are pathological.

Vince, we owe you a debt on GSI. You've always been one of our bravest. And now, you have been brave enough to bring up fear as a symptom - and personally "confess" to an alleged diagnosis of anxiety. Vince, we all have it. We have it in different amounts and deal with it in different ways. We need to teach each other our tricks and techniques in dealing with our fears, worries and anxieties. I think we GISTmates are very experienced, and comparatively expert by now, in dealing with worry and fear. We are a forum here for each other. We GISTmates are each other's co-therapists. We call it GIST Support.

Who of you on this List has no anxiety? Now that Vince has brought this up and encouraged us, why not join in and share with Vince and each other how we each handle our very human and very normal fears in the face of GIST? We need, and I think we deserve, each other's companionship. We are not likely to find more understanding, and compassion persons for each other, than we have right here and right now on GSI. Follow Vince's example. Follow Marina's. The way to deal with our fears is to look at them, to examine them with our Listmates who, unlike strangers, experience our very same anxieties, and know them as we do.

I think that fears grow in dark and silent places. We're all in this together - or we are alone. Thoughts, alternative views, arguments, whatever?
Stay strong and well,
3-29 Vince wrote back:
You name it and I'll worry about it. If I don't have something to worry about I will come up with something. If it's not this it's that. In the end I don't really have anything to worry about at all at this time. The first step as I see it WITHOUT a Xanax pill is to recognize what is happening. That helps. Most people can't see something is going on and that you have the ability to change the face of things, that is once you see something needs to change. Since my scans are every 6 months. I guess I go a little wacky every 6 months rather than every 3.


3-29-05 Ellen wrote:

Ahh Mel, once again I am amazed by your writing. Especially when it is so true. FEAR can be crippling, if you let it, or it can work for you in positive ways. I lived many years in fear, fear of the unknown. (Before I had GIST). I feared life itself. I was young and came from a turbulent home. But I survived the fear, it made me a stronger person now. Do I FEAR the future with GIST? Of course I do, but this time I will not stop living while in fear, that is the difference. I will experience all life brings to me and what I bring to life.

My list of fear with GIST.

Yes, life is full of fears, but we must go on. I look at it this way......
I can feel the fear, but not be frozen by it!!!!!!!
Life goes on, in FEAR OR NOT....

Mel says
"Here is an interesting response to the several preceding Voices on Fear. One of our GISTmates, Ellen is a creative artist whose paintings have been exhibited and much admired. We should recognize that Ellen, as a successful painter, is quite productive in dealing with her emotions constructively - transforming them in graphic ways which portray, among other things, her own artistic feelings and moods. What goes into that kind of work?

Producing creative art on a canvas doesn't just "happen". Although inspiration and spontaneity strike me as hallmarks of Ellen's work, so is contemplation of her subject matter, and considered planning for its perspective and depiction on canvas. Order and orderliness are required. At the very least, an artist needs supplies, a palette, colors, brushes - a list of things with which to work in the skilled and disciplined fashion it takes to produce a professional work of art.

So, I for one was not surprised to see creative Ellen approach her "GIST Anxiety Canvas", so to speak, by making first a List of her Fears - the supplies, elements, and basic colors, if you wish, that pertained to the dimensions and shape of her inner GIST anxiety - as she began to contemplate how she might depict it for us.
I thought that Ellen's fear list was somehow a very creative approach to the task - and not a bad one from a clinical viewpoint as well. That impression seems to be reinforced by Bev who I think is one of our most conscientious "clinicians" who has long supplied her GISTmates with lists of sensible advice.

So, from a group-therapeutic viewpoint, peruse Ellen's List and then Bev's. Perhaps, in following their examples, you can then make your own list of fears.
By throwing some light on your own vague and nagging anxieties, your list of fears might help you to handle and deal more rationally with otherwise hidden apprehensions that grow in the dark."


Bev writes...

I have been reading all the words you guys have written about fear. I then tried to think of my own fears, but it's been strange for me, which is why I haven't tried to answer until now.

I get nervous before scans, and I do have that "scanziety" that most of us share.

But, fear?

I guess I am not really afraid, or maybe I just don't look at it all the same way. I haven't faced hospice, as Marina has. My cancer has not come back, (so far!) but I know that it probably will. I didn't really react in fear from the beginning, as my personality is more "task oriented" and I just became this robot-like general, marshalling my forces, and covering my left flank, while storming ahead. It's just my way of coping with things, get calm, do what needs to be done, cry if you need to and then...put your boots on and get back out there in the fight.

As far as my other fears, upon reflection, I guess I kind of already dealt with them, in my own weird way. I think I will try to approach this by listing my fears in caps, and then my reaction/solution/responses to them.

So this is a list of my current fears and my (in my head) solutions. As we all know, these can change in the blink of a CT scan, so this can really only be true for me right now, April 2, 2005. I reserve the right to completely change my mind and freak out over something anytime at all!


HAVING THOSE DRAINAGE TUBES PULLED OUT EVER AGAIN: Knowing that I can insist on a pain shot first in the future.

PAIN, SUFFERING, OR VEGETATIVE STATE WHEN DYING: I live in Oregon, and will always maintain a residence here. Between my friends, and my MD's, I know that none of these things will happen to me.

BEING UNABLE TO SUPPORT MYSELF IF I GET VERY SICK DUE TO CANCER (BEING SINGLE): Well, I have worked my ass off at an often-boring job for many years, and although my retirement isn't great, it's government and solid, and I can continue my health care plan indefinitely--so, though poor, I should be able to get by.

WHAT HAPPENS TO THOSE I LOVE IF I DIE? : I have had long conversations with all of them already. They know I am not afraid of dying, and I know they can get by without me. I don't have small kids though, and if I did, I know this would be much harder. I do need to go make and sign a power-of-attorney though, and I really wonder why I have put this off. I have a dear friend whom I trust to make decisions and handle the legal stuff after I die. I don't want to put my family through that, and bless her, she has agreed.

WILL I FULFILL WHAT MY SOUL IS HERE TO LEARN? : I guess that is the hardest one for me. On the other hand, I feel that God will be gentle with true efforts, and I do think I have tried.

MORE SURGERY: Well, at least I have had a rest from that for a while, and I have my strength back. I have also learned SO MUCH about what to do, and to not do in hospitals. I am afraid of infection, especially now with no spleen, and will have "cleanliness nazis" trained and with me at all times.

OVERWHELMING INFECTION DUE TO SPLENECTOMY: This is a fear. It would just bug me to survive cancer and then die of pneumonia or meningitis or a cat bite. To deal with this one, I have followed the guidelines, AND I carry a thermometer and antibiotics at all times. I have educated myself, and I know that when I am too sick to contemplate getting out of bed and to ER, THAT is the time I really need to go. I also have the lovely advice nurses at Blue Cross to advise me.

BEING UNABLE TO BEAR MORE DEATHS AND LOSSES OF FRIENDS IN THE GIST COMMUNITY, (OR OUT OF IT REALLY...): Sometimes I feel as if my soul is breaking. It's so hard to loose those you have come to love, whether on-line, in person, or from phone calls. I haven't figured out a way to deal with this one yet. I guess, if I crack all the way, a counselor or friend would probably pull me out. I do know, I am not afraid to ask for help if I need it...maybe that would work?

NOT HAVING ENOUGH TIME: There are so many things I want to do. I want my children’s rhymes and drawings published. I want to finish writing my books, especially the one about the remarkable generations of women in my family. I want to screw around, and scuba some more, and take some vacations, and create things that will please others and myself. I am so tired from work that I often just collapse when at home. I guess I am afraid of running out of time to do the things this beautiful world allows.

DYING OR BEING INCAPACITATED WHEN MY HOUSE IS A WRECK: I am serious about this one! What have I done about it? NOT ENOUGH trust me. Time to start cleaning again...

Last, but certainly not least:

MY GIST COMING BACK: To be completely truthful, my odds of GIST coming back are in the 90-100% range. I guess I am more surprised that it hasn't come back as yet. Since I had a stomach primary tumor, the odds that I have an EXON-11 tumor are pretty solid. Thus, it's likely that I will respond to Gleevec, at least for a few years (if not forever, though we certainly have people on this list that ARE still stable on Gleevec. So, what have I done about this?
1. Educated myself
2. Hired a world-class GIST expert, Dr. Blanke, to advise me
3. Prepared as much as possible for the economic/physical/general-life
stuff that this would mean.
4. I follow my own case closely, look at my scans, look at my blood work, and I have become close to several MD's who know what they are doing with this disease.
5. Helped start this list, so free flow of information will ALWAYS be
available for ALL of us. Patient information and sharing is a POWERFUL
WEAPON against cancer.

0n 3-31-05 Jeni wrote:

I thought I understood fear. I was afraid to ride ATV's I was afraid to bungee jump, I was even afraid of bumblebees. I realize now that I hadn't even known what fear meant. I was afraid when the surgeon said we have to remove your appendix. I was afraid when I was told it was a tumor (appears to be benign of course) But still a Tumor. I was afraid again when he said; I have to open you back up to remove infection. I was afraid again when he asked if I was alone at the doctor's office. It was then and only then I understood fear. Fear is what happens when a doctor tells you that you have a disease they can't cure with surgery or drugs or even prayer. Fear is the feeling you get before you call your husband at work and ask him to come home. Fear is the tears that stream down your face while you watch your babies sleep that night.

How do I deal with the fear, well I start with prayer in hope it will help to ease my mind. And then I get busy learning everything there is to know. I sit down with my husband and discuss all the things I thought I had time to discuss. I actually fill in my children's memory books. I will do anything to keep busy. Then at the end of the night, I curl up in bed with the love of my life and tell him I am scared, he holds me until I feel so safe, I am sure the cancer could never get through.

Everyday, I fear one of my babies will ask me what cancer is; I think I fear more that someone, somewhere will tell them. They are so innocent in believing my boo-boos are almost all better. I fear that there will come a time when they cannot sit on my lap due to another surgery. I fear that they will have to visit me in the hospital and see another IV with wide frightened eyes.

Now everyday is not the same, some days I simply don't have time to be afraid of anything but whatever Nicholas stuck in the toilet. Or what Nathaniel had in his pants pocket that was so sticky. Some days I simply don't have time to have cancer, on those days, I treasure that I am well enough to forget.

I have learned to schedule CT Scans and blood work around coaching soccer and dentist appointments. I have learned to smile and laugh and cry with this disease.

I think my fear comes from a lack of choices, something that is out of my control.
I cannot choose if I want cancer or not. However, I can choose how I live with it.
I have made my choice.
I choose to live without fear and I choose to die without fear.


Post a Comment

Links to this post:

Create a Link

<< Home