Monday, June 08, 2009

Struggling When Friends Disappear

Nancy's post: Struggling

When I was 14 years old my 6 foot 3 inch father suddenly started dropping considerable weight. He eventually dropped to 85 lbs and was eventually diagnosed with anorexia nervosa. It was a terribly complex situation as little was known about the disease at the time. Basically it felt like he was committing a slow suicide. I was in high school at the time and for me one of the ways to cope with the stress was to throw myself into my school work. It was one of the few things I could "control" and kept my mind from dwelling on the pain of the situation. In those 4 years there was only one class in which I did not get a 4.0.

In my early twenties the same week I was diagnosed with cervical cancer my father died alone in the parking lot of a hospital, not strong enough to make it inside. He basically starved to death. Again I found myself struggling with depression and found that my coping mechanism was to spend extra hours at work. I was evaluating software at the time for a major corporation. I ended up meeting and marrying the consultant on the project, my husband of 21 years.

Upon returning to work after a 4 week medical leave after the removal of my GIST I was asked to interview for a significant promotion; a job I began the same week I started Gleevec and just a few weeks before they found the second mass on my duodenum. Again, I find myself returning to my "workaholic" coping mode. In the fall when I took a week long vacation I found it hard to enjoy myself as I had too much time to reflect on the diagnosis, and the new issues, the side effects etc.

Bottom line, it seems clear that my psychological coping mechanism seems to be to throw myself into school, work, etc. It has really not been a bad strategy although I can't say consciously chosen. The thing of it now is that the gleevec exhausts me, so by the time I reach the weekend I'm exhausted and not able to do much more than a few loads of laundry, pay the bills, and go to church. Clearly my friends do not seem to understand.

I think they're even rather mad at me. Two of the three friends in my book club don't want to talk about GIST or cancer or acknowledge what is happening in my life. Another dear friend of 20 years, a pastor, hasn't called in months. The only friend who has shown no sign of judging me, who lets me say whatever is on my mind and heart without discomfort or criticism is the friend who lost her brother to cancer 2 years ago and her husband to leukemia 1 year ago.

I suppose I'm baring my soul to the hundreds (?) who may be reading this email. So I beg you to be kind if you choose to reply as I'm feeling rather vulnerable. But I'm struggling with scolding myself for not being a better friend to these people -- after all friendship involves a two-sided relationship -- and shouldn't I be able to muster the strength and understanding to reach them where they are instead of expecting them to come with me on this journey. Still, these last 6 months have become such a defining part of my life at the moment that it seems "fake" to try to "pretend" that nothing has changed.

Something really big has changed in my life, and while they want to believe that
everything is okay, and while I really am doing quite well, the truth of the matter is that in the morning on the way to work each and every day I cry, wiping the tears dry when I walk across the parking lot. And while I think I look normal and much of the time can act normally, the truth of the matter is that I can't go out on Saturday night with the girls because the gleevec has made me nauseated, exhausted, and I'm struggling with muscle cramps. The truth of the matter is that I care about them a alot and I feel really bad that somehow this distance seems to have crept between us.

Maybe if I was stronger I could do this differently. But I'm just me, doing the best job at living one day at a time, one moment at a time, in search of all the hope that I can find. Clearly I'm coping in a way that has worked well for me over these last 46 years.

But if I can't muster up the strength to find a different way of doing this will I be left with any friends?

So do I bare my soul and send this on, or do I play it safe and hit the delete
button????? Really I'm just being terribly honest and venting a bit. In the chance that there is someone else out there who is a bit like me and might take some comfort from my honesty.... I'll hit the send button. For the rest of you, thanks for indulging me by letting me share my struggle.

Nancy

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MARIE'S ANSWER

Dear Nancy,

IT is funny the way family and friends react to GIST sometimes. When I was first diagnosed in 2005 everyone including strangers offered tons of support. It was rather overwhelming. But, in a short time it all changed. To me it seemed that because I wasn't stuck in a hospital bed somewhere and because I wasn't going bald due to chemotherapy that everyone seemed to forget that I had Cancer.

GIST was like an invisible disease to me. Because on the outside I seemed to be holding it together. On the outside there was no evidence of disease. It was like when they heard I simply took a pill and the tumors would shrink that they forgot all about me. I became extremely depressed and even had others say "why does she sleep all the time doesn't she realize how lucky she is to still be here?" I would even have to yell at my husband "I do have a life threatening illness or did you forget?"

I went on like that for nearly 4 years. Until last month. I wound up in the hospital for 8 days. I had become resistant to the Gleevec and by the time we realized it, the tumors had grown, and once again I look 5 months pregnant. They have taken my insides completely over. Until my Doctor did some research and found out about Sutent, everyone including myself thought my time had come.

Yet once again I have taken the pill and seem to forget once again. This time I have no problem telling everyone, I might be feeling well, and looking well, but I still have a long battle ahead of me. I just might be dealing with this the rest of my life.

I think you should let your friends read the email you posted often times people don't know how to react or what to do or say when a loved one has cancer. My best friend needed a push from my husband, she was afraid to be around me cause she was having such a tough time dealing with it she didn't want that to show in front of me.

Speak up and if the behavior doesn't change well.......the good news is in times like these you find out who your real friends are, Since my diagnosis I have left some "friends" behind and learned that some I considered acquaintances were actually very good friends. Not sure if any of this helped at all...but I certainly hope so. I would love to be your friend.

(I, too, lost my mom to cervical cancer when I was just 20 yrs. old.)

Marie
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MARINA'S ANSWER

Get this book and read it!!!

"At the Will of the Body, Reflections on Illness" by Arthur Frank.
http://www.amazon.com/At-Will-Body-Reflections-Illness/dp/0618219293

It is one of the very best books about the sociology/cultural impact of major illness. There is more than psychological coping, there is sociological coping.
Illness is shunned in our society...If you act well, then by gosh to those around you...you are as good as well...and they don't have to deal with the stress that your illness causes them...

Marina
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BARB ANSWERS:

When the chips are down it's time to see how your friends respond. Then on the other hand maybe their denial is their way of coping. Everyone copes his or her own way. My husband who is sick thinks if you don't think about it and don't talk about it then it goes away. I know in his heart he knows better but he doesn't communicate about things that are scary to him. He won't even really ask the doctor any questions. I don't think he wants to hear the answers. I think it
annoys him when I question the Doctor, but I ask away. LOL.

So give your friends a little leeway.........they may just love you so much they can't focus on cancer. And this group is new to me but seems to very good shoulder to vent or cry on.
Barb
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ANONYMOUS ANSWERS:
I also think the point made about "only" taking a pill is true. I know people who ask me about my husband when I say he takes 2 pills a day give me the look. Like he's not really sick. And he seldom looks sick. He helps me to and from the car and I'm gimping along and he looks like the caregiver. People think I'm nuts I think. But he is sick and you all know it. It doesn't have to show. Even our own daughter who lives in the same house had a problem with it until recently when she saw him in his pj's and robe at 4 pm and wondered why he wasn't dressed and he just shrugged and said I had no place to go......then she came to me in tears and said "is Dad worse? Until then I think she was in denial.

Chemo is scary.........but taking a pill is nothing to these people.
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CHERYL'S ANSWER

Dear Nancy,

I feel just the same as you do. Nobody understands that taking that little pill, isn't the easiest thing in the world. My tumor was discovered in May 2008. I had surgery over the summer to resects it, along with a hysterectomy for safe measure. During the time right before and after my surgery everyone offered help whether it was driving my kids to school and activities, or bringing a meal over to the house, I too was overwhelmed by the graciousness of everyone. I have a friend that I've known since high school. We were like sisters. Do you know that my so called best friend never once came out to see me when I was in the hospital, or afterwards when I was home recovering all summer long.

Yes, she called to see how I was doing the first week I was home. But not once came to the house. Maybe she couldn't deal with my diagnosis. I don't know. We finally met up with each other during our annual "Parents' Weekend Out" in October.

Gleevec was still fairly new to me and I just couldn't party with all the other parents that came that weekend until the wee hours in the morning. Ten o'clock I went to bed. She didn't understand why I went to bed so early and took it personally that I was mad at her. My husband had to explain how my life changed and that I'm very tired and need extra sleep. I am still NED, but live with Gleevec. Nobody understands my tiredness, loss for words, confusion, or even change in diet. Because I look healthy, and have no tumors, everyone thinks that I'm fine.

This week, a lot of people got a good dose of the "No, I'm not fine" attitude. My daughter who is 12 years old, became sick in October. The doctor diagnosed her with mononucleosis. So for a couple months, all she did was go to school, eat dinner, do homework and go to bed. After Christmas Break, she started getting sick again. I thought it was mono coming back. Mysterious fevers and tiredness plagued her little body off and on accompanied with rosy cheeks. I took her back to the doctor and they ran a battery of blood tests on her. To make a long story short, they're thinking she may have Lupus. Her ANA was 640 and normal was supposed to be 80. Talk about the world crashing down again...here it came. I have been a blubbering mess since I found out on Thursday. I'm trying to keep my composure around her because I don't want to alarm her. I figure I'll tell her when we're on our way to the Rheumatologist's office ( whenever they decide to call me back to make an appointment).

It's bad enough that I have to live with the fear of getting tumors for the rest of my life, but here's my daughter who may have a chronic illness that will be around for the rest of her life. Yo top my week off, today I was driving home from Walmart (we live in a small country town) and had a spinout on the road and landed halfway in a ditch on the side of a farm road. I had to call my neighbors to come pull me out. Then I tried to bake them a cake this afternoon to say thank you for their help, and when I tried inverting the cake onto a plate, the whole thing broke apart into pieces...and so did I.

Where are my so called friends? Even my husband is out skiing with my son and the Boy Scouts. Some days you just feel like crawling in a hole and covering yourself up. I think I will start a journal. I'll write down all the things that upset me and make me angry. Maybe that will help me to cope with life's ups and downs.

Thanks for sharing your story Nancy.

You're not alone.
Cheryl
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JESSICA'S ANSWER

Dear Nancy,
I too lost a number of "friends" after my recurrence, including someone who I thought loved me and I could trust. It's times like these that we find out who are real friends are. Instead of expecting you to go out with them on a Friday or Saturday night they should be offering to come round to your place to watch movies and chat. You are going through enough without having to try and fit into their ideas of how you should living.

You need to take care of yourself first at the moment a true friend will understand that. I hope I haven't upset or offended you I'm just saying what I believe to be true in my mind.
Peace, Love and Happiness
Jessica
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RUTHIE'S ANSWER

Dear Nancy,

I'm glad you hit the send button....
It's good to vent, we all need it, and should allow ourselves opportunities to vent..otherwise things build up and get too overwhelming...

Today was a day like that for me... several things have happened in the past few weeks, and I have been trying "to keep the lid on.".....

Last week we got hit by a hit and run driver, ...Today we were at a red light and got rear-ended again!!.. I totally lost it, and am angry and down.. I dialed 911 and totally lost it, started crying and carrying on... I totally overreacted.. (I wasn't proud of myself !)

Thank God we weren't hurt either time.. I'm angry that we have to deal with paying a $500 deductible for last weeks' hit and run damage caused by a jerk who sped away too fast for us to get an identifying plate , -- Today's damage ,we hope, was minimal, (need to get it checked underneath..)

It was just the unexpected jolt of getting hit again today, on top of everything else that has happened in between last week and this week... that pushed my buttons, and set off my emotional state to just shatter... all my anger, and fears just overtook me..--

As I said, I'm never like that, I'm the glue in my family, I'm the problem solver, the rock... but you know what.--.my rock cracked and all my jagged edges were sticking out.... my rock needs polishing sometimes, and I needed consoling, and understanding ...and wasn't getting that need filled... I felt like getting on a plane and running away..

I'm usually pretty strong, and can deal with a multitude of things and handle them pretty well...I'm usually the strong one in my family, and no one expects me to lose it... but I am not superwoman... today superwoman cracked! I allowed myself to empty out...and feel some relief from all the pressure that built up...

It sure did feel good to cry and get it out of my system... it didn't change anything, but somehow I felt better after that cry.!!

I have found though, as you said, sometimes we sense that family and friends don't like to really listen to ongoing details of what's going on with what's happening with GIST...our fears and worries compel us to want to talk about it...we need reassurance and hope...

I don't think it's that they don't care, I just really think they don't truly understand ... they're uncomfortable, they don't know what to do to make us feel better, and I think in their own way, sometimes they are trying to change the subject to help us divert our energy & thoughts to more positive things... (which isn't such a bad idea, it's just I resist it sometimes.. even though I know it's good for me..that's my fear working in overdrive!)

There are times we really need someone to just listen, and show some concern and understanding... we need our big black hole filled... and are disappointed if the one we think might help doesn't come through for us...

I know most times no one can do anything for me, they can't change what's happening, I just need to be heard and have my feelings and fears acknowledged..having a sounding board really does help...

There have been occasions that I just walk around the house talking to my mother (who died in 94!) and just venting to her that I'm pissed off, angry, scared, whatever, --that I need help and don't know what to do, --- for me doing that helps me just to verbalize what's going on and get it all out of my system.. it's a safe thing to do in the privacy of my home.. (of course I only do that when I'm totally alone, otherwise people would think I'm totally nuts!!) I don't do that too often, but when I do it sure helps me empty out totally.

Marie's advice sounds reasonable to let your friends know how you're feeling.. -- our family and friends can't read our minds... sometimes we just have to let them know we're vulnerable and need them, and tell them exactly what we need...

I have found when I sincerely ask to be heard, and feel like I can't take it anymore, and reach out and let it be known that I'm in that state of mind..and need to talk and be just listened to ...with no expectations ... it helps soften the situation.. and I'm granted some uninterrupted time to vent... I just have got to remember to be humble enough to ask,-- and not demand it... It does work better than me saying something negative which turns off whoever I'm wanting to listen to me... and not put them on the defensive...

I'd say wear your heart on your sleeve and give them a chance to try and show some understanding and help lift you up...it's worth the chance.. don't keep all that bottled up inside you...

Good luck to you,... hang in there...I'm rooting for you....
Sincerely,
Ruthi

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JENNIFER'S ANSWER
Dear Nancy,

I cannot say that I can truly understand what you are feeling or what you are going through. So far, my personal health has been blessed. My father was recently diagnosed with GIST in December 2008. I want to tell you to be strong, but also to be honest with yourself and your friends and to never be afraid to ask for a little help. I very much appreciate you sharing your story.

I signed up on the GIST support group the day I found out my father had GIST. Since that time, I have listened to the advice given, read about individual experiences and learned an invaluable amount of information. I shared what I learned with my Dad, and I was able to communicate knowledgeably with his doctors. A few weeks ago, my Dad requested that I not ask so many questions and just respect his decisions. He has been losing blood. I had wanted him to follow-up with a GIST specialist and he wanted to wait and see how his body does in the next few weeks. In any case, to
make a long story short,.. I have respected his request and have pulled myself out of his "medical arena". My dad and I talk every few days, but not so much about his health. He says he is doing okay and I leave it at that.

In these past few weeks, I haven't been reading too many of the GIST support mails. However, your email caught my eye. It opened my eyes in that maybe my Dad is not entirely okay with everything. Maybe he just wants us not to worry about him?? I think it may be hard for him to admit he may feel lost or vulnerable at times. I think maybe it may be hard for him to ask for help and maybe even hard for him to receive help. After reading your email,.. I think that I'm going to be a little more observant in my visits with my Dad and be sure that he knows I am here whenever he needs me, at all times of the day.

Back to your situation,... maybe your friends/family think you are okay because of the way you present yourself (i.e.., like life is okay, you are strong & doing well)?? Maybe your friends feel like you don't want to talk about your cancer? One of my golden rules in life that I try to follow,.. never make assumptions. Life is too short to waste your time trying to figure out how someone is thinking or feeling. Assumptions make life cloudy and unclear. It is hard to make an assumption on how someone feels without coming out and asking them directly. You may be making some assumptions on your friends feelings and they may be doing the same about you.

My advice to you is to just come out and talk to your friends,... tell them you need a listening ear, a shoulder to lean on. If they are true friends (which I'm sure they are),.. then they will be there for you. It is okay to ask for help. On the other side,.. you should always know that you do have the inner strength to pull you through the tough times.

Well,.. that is my two cents. As a distant, unknown friend,.. my prayers our with you, your friends and your family. I wish you the strength to reach out your hand for help as you continue to walk forward in life. May you always feel the love and support of your family and dear friends. I appreciate your honesty,.. it has shed a little light in my little world.

Thank you and take care,
Jennifer from MI

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ANONYMOUS SAYS:

Dear Nancy,

Thank you so much for opening this topic. As you can see, you are certainly not alone!

You have had some really good advice here, so I won't repeat it, even though much of it is what I would have said myself. I will just add a few other thoughts for you.

Some people are just hopeless are illness, and it really doesn't have that much to do with you. They don't know WHAT to say, so they avoid putting themselves in the position of saying anything at all. Avoiding you, or avoiding the subject...both are just tools for their own issues with illness, or loss, or being frightened. So, as hard as it may be to hear of understand, much less do, try not to take their inabilities personally.

Some have issues with cancer themselves, they lost a mother to it when they were young, or cared for someone they loved who died of it, or even had to shoulder work for a disliked co-worker who talked of nothing else for months, and still harbor resentments that additionally make them feel guilty for even feeling pissed that they missed their child's awards ceremony because of CANCER.

You just never know.

I didn't lose any friends, but my best friend of over 40 years had a breakdown about my cancer, as she had spent the previous year caring for her fiance, and he died a horrible death from renal cancer. It just wiped her out, and she shut down. Of course, part of my understood most of this, but it still hurt like hell and added months of stress to me. I realized that even though I was sick (at the time I was going through a lot with GIST, and thought it had recurred, etc.) that I needed to pull it together, realize that it wasn't all about me, and forgive a LOT of really shocking behavior from her.

Today, we have worked it out, and that long friendship survived.

With others? I just talk quite frankly, when it comes up, I treat it with about the same level of being comfortable that I would mentioning that I have split ends, or talk about their twins throwing a baseball through a neighbors window. I don't adjust, I don't only talk of cancer, but I think my frank acceptance of being a cancer patient had slowly helped my friends "get comfortable" with it.

I treat is as if it is just part of me. It's NOT all of me, but I sure won't hide it or tiptoe.

I have done this from the beginning, and it seemed to work out pretty well, even though I certainly sensed the discomfort of some in the beginning. I would get a hushed "so...how ARE you doing?" and reply and then move on, and after a while, once they realized that I didn't expect them to "fix" it, or always cheer me up, or say the right thing, they began to me more at ease talking to me.

Did some say hurtful or stupid things at times? Of course! I let it go. I knew it was hard for them to find their footing with this new danger to them, the danger or caring too much and losing someone. They were (and occasionally still ARE) awkward, and I had to get a tougher skin while they learned to cope.

Marina recommended a good book for you. Another, and their is an excerpt on our website is, THE TYRANNY OF POSITIVE THINKING. That one may help you cope with those who feel cancer is a state of mind and if you just fill yourself with positive thoughts or eat correctly then you would be all better.

All of that said? There are friends, and then their are friends. Some, you may have to let go. Some may be worth your time and effort of helping them learn to exist in this new world, no longer just the two of you, but this third wheel you are forced to bring along, Cancer.

It doesn't seem fair that with all you have to cope with, you also have to cope with friends' inability to cope. As my old boyfriend used to say, "life's not fair." Hold out a hand and help them muddle through it. If you are too tired, just SAY that, "Sorry, this chemo is such a bore, I am exhausted by 10 PM, but I am usually great around noon! Want to have lunch next week when I am actually, you know, awake?"

Laughter really helps. Forgiveness and understanding help more.

Meanwhile, you now have a whole group of people you don't have to explain yourself too, so vent here, while you teach the friends worth teaching in your non-cyber life that you are not made of glass, but still need a bit of TLC sometimes.

Some people also find a counselor to be a great help. It's a person who is just on your side, always, and who can listen to all kinds of things without being hurt or upset, and even help guide you with insights about yourself, and others, and how this whole thing can be a pain in the wazoo, but still coped with.

Some people find in-person support groups to be a help too, shared issues in person. (Frankly, the whole idea of that gives me the willies, but for some it's wonderful.)

Welcome to GSI.
Hang in there, you will get through this.


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ANNE'S ANSWER

I've just finished reading your posting, along with those of all who replied to it. I am really glad that you brought up this subject.

Selfishly, it makes me think of how my husband is handling his disease. He is a really easy-going person who never over-reacts, always thinks positively. Among his siblings, he has always been known as being amazingly good-natured. So naturally, none of them are surprised by how he appears to be handling having GIST. He has a very positive outlook, figures he will handle things as they occur --- no reason to worry about "what might happen." And yet, your email makes me wonder what really goes on in his own mind.........thoughts he does not share, even with me.

From his initial diagnosis three years ago, he has been upfront with our friends and family and very willing to tell them how he is doing. Luckily, he has not had a tough time with Gleevec so he usually feels quite well. Our friends have been really supportive — I even think it makes them feel good to be able to talk to Bob about his disease.

You know how you have different friends? --- Some are friends with whom you enjoy common interests? Some are friends who have known you for years? Some are friends because they are work colleagues? --- And some are friends with whom you can share most anything? This listserve has many people who will fit into that last category — new friends...... me among them!

I'll be thinking of you today, wishing you a good day!
Anne
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MICHAEL'S ANSWER
In one way or another we all get surprises. Divorce and YOUR dog puking on THEIR carpet are a few more tests. What it comes down to, for me, is family / friends to be honestly empathetic. Don't have to say anything in words. Cancer is not contagious. You will live longer than many of "THEM". Have a hot chocolate and read/write a few more posts, take a breath and look somewhere else; even from well meaning but clumsy people. Your and my nerves don't have the endless capacity to endure it.

Michael
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BILL SAYS:
I am a new GIST member for the past couple of weeks and this is my first encounter reading about your "life with GIST". I merely want to say, that you have truly hit the ball out of the part on this one.

I was inspired by your words and appreciate the encouragement you have rendered. For the past 13 months, I too, have felt rather abandoned by close friends, business associates, even some family members and thought I was the leper.

Comforted by your thoughts,

Bill

Sunday, July 10, 2005

Anger and Resentment

VOICES OF GIST: Why Not Anger and Resentment?

Among the many posts to this List, we can sometimes hear the shouts and murmurs of our mingled voices - and some of the human sounds of our GISTmates. As we have come to share among ourselves something of our individual circumstances and personal worries, we have grown closer together - and I believe, at least in that way, we somehow mutually enhance ourselves and become strengthened as an informative and caring group.

Although we describe our various symptoms, concerns and complaints quite fully on this List, we appear to harbor relatively few, if any, dedicated complainers - or even persistent whiners, for that matter. Now, I find that especially interesting because our complaints as patients are regarded as an essential aspect of our medical history and diagnostic workup in clinical medicine. A full and proper diagnostic workup seeks to elicit from patients not only an overview of our pertinent complaints, but a so-called Chief Complaint as an element in relating the patient's medical history to one's service chief, consultant or colleagues.

So, although complaints are medically important, it seems to me that our GIST cancer List contains not only relatively few angry or resentful complainers, but that we appear, at least on the surface, to be a rather gentle, good humored and compliant group, under our potentially dire circumstances. While that might seem rather good, if not entirely commendable, I find it to be somewhat curious behavior for many patients diminished by our GIST sarcoma, and jeopardized by the ongoing threat of recurrence and metastases.

So why, I ask, are we and our caregivers not expressing more frequently and openly the sounds of anger and resentment, and howling with outrage under stress and discomfort?

I think it is, at least in part, due to our gratitude. We are terrified but grateful that, unlike too many other cancers, our GIST was identified and diagnosed in time as a treatable neoplasm with relatively favorable prospects. Favorable, that is, providing we obtain proper treatment and monitoring by GIST experts, that we comply with that treatment, and that we remain lucky.

Remaining lucky, despite what they say, is beyond our control. That is so very sad and unfair. Equally unfair, however, is trying to find optimal treatment, and afford the very best if we can. (and who of us deserves or should settle for less than optimal treatment for as long as we can, while awaiting a true cure for GIST?). Some of us have not received optimal or even timely and acceptable treatment that might well have prevented a preventable recurrence. How are any of us supposed to feel about that?

At the very least, sad, depressed, angry, resentful, I would think.

And so, a few weeks ago, when one of our GISTmates, Susan, ventured to post to the List her strong feelings of anger and resentment, we asked and received permission to include her contribution to the Psycho-oncology (Psy-Onc) page of our GSI website in order to encourage further expression and discussion of our human emotions as cancer patients and caregivers. We hope you will go to that page - especially if you somehow feel undeserving of feeling and expressing emotions, or that they should be stoically suppressed, and suffered in masochistic silence as some kind of virtue.

What good does it do to complain, you might ask? Read what SUSAN wrote, and see the good it began to do for persons who care about each other.

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Susan posted the following on Wednesday, 6-22-05 at 1 a.m.

"I have had a lingering anger and resentment towards my former primary physician at my HMO and don't know what to do about it so I thought the best thing to do was to write about it here.

I was diagnosed in August 04. It has taken me this long to write because I feel that my problems are small in comparison to the many people on this list who have to fight the beast of GIST much harder than I have. Many people have lost the battle this year and I grieve for each and every one of them. My prayers go out to their families.

Please forgive me if my question seems selfish but I just have to get this off my chest. My stomach aches with worry about what to do and I know that is not a good thing. I want to know if anyone has ever tried to sue their physician or HMO for neglect or medical malpractice for failing to diagnose their GIST? I had complained to my primary for 3 years prior to the discovery of my GIST. I complained over and over about chronic stomach aches, bloating, weight gain. He blamed it all on stress.

The way my GIST was found was during a surgical procedure to get a gastric bypass to lose weight. Up until that point, the GIST had never been diagnosed. I did have an abdominal ultrasound prior to the surgery and still nothing was seen. Fortunately, my bariatric surgeon recognized the tumor as GIST and removed it intact with clean margins. I had a low mitotic rate and am in a very low risk category for recurrence. So, for all this, I am extremely thankful.

I just can't help but wonder what would have happened if I had not elected to have the gastric bypass procedure. My GIST would have continued to grow and my physician would have continued to blame my physical symptoms on stress? I had a CT scan in March, 05 and will have a follow-up on my one year anniversary in August 05. I do feel blessed and I am thankful. But, what to do about the physician who ignored me and treated me like a mental case? I know I've rambled but I feel better throwing this out there and if any of you have any suggestions I am all ears.

Susan in CA

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And then MARINA promptly replied with heartfelt support and her own perspective:


"Hello Susan,

I believe that GIST is overlooked during early symptoms. The symptoms are vague and non-specific, or even almost non-existent. Perhaps your blood work looked perfectly normal, and you had no signs of blood in your bowels,and the physician could not palpate a tumor, and as you stated-nothing appeared on an ultrasound immediately before your gastric by pass surgery.

My own GIST was overlooked for years. I now realize that a person should not be able to "feel" his stomach--but I could--or at least so I thought. I could press down very hard and feel something that I thought was my stomach (it was my primary tumor). I could do this in 1992...the tumor was that big then. Between 1992 and late 1997--when I was diagnosed--my midsection gradually thickened. I had a baby in 1995--nothing was noticed during the pregnancy that included a couple of ultrasounds and an amniocentesis. From 1992-1997, I had a gradual softening and narrowing of my stools--so gradual that I can only look back and see that I went from one situation to another...but don't know on what day that I should have taken notice. I just thought this was the way my body would become in my 30's.

Between 1992-1997, a bulge developed under my ribs...slight at first...thicker later...When I would lie down on a hard surface like a floor, I could feel pressure under my ribs. IT gradually increased, but then I didn't lie on my stomach on the floor much..All I can say is that I remember feeling this bulge for years before diagnosis.

In the summer of 1996, I had a complete physical exam. Something deep in my abdomen sort of "pushed out of the way" when the primary physician palpated near my right liver lobe--it felt like something slipping, not the slightest bit of pain, I thought it was my"stomach" once again--it was a big honker GIST tumor. They physician did not notice it, nor did I understand it was an abnormal sensation--that a person can not "feel his stomach." I grew very sick all during 1997--gradually looking worse, the bulge changed my figure so that it was noticeable in photographs. My complexion was a strange color..sallow--I didn't like the color, couldn't understand why I looked that way-avoided looking in the mirror. Again, such a gradual process that I can't say on which day that I should have noticed. I had not a trace of blood in my stools.

Only after a couple of sessions of severe GI cramping in late 1997 that were painful enough to rival childbirth, did I go to a doctor to inquire about this strange unhealthy feeling. At first this doctor was at perplexed about the symptoms that I described--he checked my stool for blood--nothing showed up--then came the moment he palpated my stomach. His immediate comment, "Has your stomach always been this distended?" After my surgeon removed a 22 cm duodenal GIST tumor very lightly attached with a thin stalk to the outside of my GI tract--he (the surgeon) commented that nothing would have shown up with an endoscopy...the insides of my bowel looked reasonably normal--the tumor was so lightly attached to the outside with a thin stalk--he described it like a large melon with a thin piece of vine...

I had a liver full of metastases at the time of diagnosis, and yet my blood test looked perfectly normal--nothing in my blood tests to indicate advanced cancer. I had a tremendous amount of self blame for not noticing the signs of cancer--but then they were so vague and so gradual. More than one doctor overlooked my tumor. I know stories where people were diagnosed by accident--had no idea that they had a tumor growing on the outside of their GI tract until something happened. One person had a car accident, and the impact ruptured the tumor--discovered as a result of the injuries from the wreck. Others had very advanced and large tumors at the time of diagnosis--found when the tumor caused pain.

Gleevec itself allowed me to forgive myself or past physicians for overlooking something that was subtle and rare. I sometimes hear stories of individuals who had GI symptoms for months before seeking help--blood, pain, etc and they turn out not to have cancer, but rather a non-malignant condition. My large cancer was insidious, and I was not clever enough to pick up on the vague signs, nor were my physicians--who were not told by me that there was anything amiss. I forgive them and myself.
Marina
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Mel had posted a note of encouragement to SUSAN.....

Susan then replied:

Dear Mel:

You wrote in response to my post: "Your post and Marina's reply are meaningful messages for all of us, and some help from fellow patients and caregivers. May we add your two contributions to our Voices of GIST on the GSI website? They do credit to both of you and to all of us who know the many feelings, emotions and human challenges of coping with the diagnosis and treatment of cancer."

Mel, if you feel that what I have written is a worthy contribution and a help to others than by all means post away. I am honored that you asked. I, as a former caregiver to my mother who suffered from end-stage renal failure, congestive heart failure and constrictive pericarditis, know all too well how difficult it is to maneuver through the complicated world of medicine.

I fought hard to get my mother the best treatment and care she deserved for the 3 1/2 years she suffered and endured her terminal illnesses. At the end, she got what she desired the most: dignity, compassion and the ability to live out her days at home until the end came. With the help of hospice and two angelic caregivers working round the clock Mom passed peacefully, at home, in her bed, just as she wanted. For that, I am most grateful.

I still consider myself somewhat of an advocate for patient's rights, especially for those, like the elderly and disabled who often don't have anyone to speak up for them. I know that is why I feel the need to address my former physicians less than caring and concerned treatment of my stomach complaints.

If I don't speak up then I am not helping to right a wrong. With the responses from you, Bev and Marina, I know that the one thing I will surely do is to write a letter to my former physician (an internal medicine specialist) with a copy to the HMO letting them know how much his lackadaisical attitude affected both my physical as well as my mental well being. After all, isn't the Doctors Creed "DO NO HARM?"

Sincerely,
Susan

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Mary answered Susan On 6-23-05:

Dear Susan,

I really understand your anger. As an attorney who used to work on medical malpractice cases in Boston (now living in Ireland), I know how tricky these cases can be. You must be prepared to have your life as well as that of family members be looked at under the microscope. You have to weigh your chances of succeeding against the whole legal process which can be very stressful.

I think California has a short statute of limitations for filing a medical malpractice case so if you are seriously considering it, you need to talk to a lawyer there asap. Keep in mind that most of the medical malpractice cases that go to a trial are won by the doctors. Doctors are only human and do make mistakes but in some cases the mistake justifies a lawsuit. Think of the best way for you to channel your anger - if it is through a letter or a lawsuit or something else - do what is best for you. Hope this helps.

Mary in Galway

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And then Joan Marie wrote:

"Hi Susan,

I can relate to your feelings. In 1997 while on active duty in the US Navy I went to Bethesda Naval Hospital with a complaint of a sudden change in bowel function. The Internal Medicine department ordered a plethera of
tests to determine the cause. The only thing that they found was a complex ovarian tumor. I underwent a laparoscopic procedure to remove this tumor,only when they looked at the ovary there was no tumor. So even though they knew this 'ovarian tumor' was found while looking for the cause of a change in bowel function they never looked any further, closed up my three small incisions and sent me home. Subsequently I was diagnosed with Irritable Bowel Syndrome. Every complaint thereafter of weight gain, pain, GI distress, bloating, etc was attributed to IBS with the all-too-often heard phrase "That is very common with IBS". Fast forward to Jan 2003 when an ultrasound revealed another 'complex ovarian tumor' - this time very large.

Off to surgery I went again, only this time they did a laparotomy, not a laparoscopy. What they found was a large primary GIST on the small intestine that LOOKED like ovarian disease on the imaging. They also found lots of mets but were able to remove all visible disease. They did not get clear margins. I have been on Gleevec 600mg ever since.

When I think back to 1997, I feel that if only they had done a laparotomy or even looked just a little bit more, they would have found my GIST while it was small and before it had metastacized. If only a doctor would have taken my complaints more seriously and ordered some imaging earlier, my cancer would have been found earlier. If only I had not been 'tagged' with that diagnosis of 'IBS'....if only, if only, if only...

First was the shock of hearing the word 'cancer' applied to ME! Then the reassurance in knowing they were able to remove all but microscopic disease. Then the hope of being prescribed Gleevec. Later when I was able to think back on my medical history to 1997 I became very angry. I wanted to cry and scream and shout and kick stuff.

It is very hard for an active duty individual to sue the government, so that was never a consideration. I did write a letter to the Commanding Officer of the National Naval Medical Center in Bethesda to explain my situation and express my concerns about the 'assemply line' treatment I was given at what is supposed to be the finest military medical facility our nation has to
offer the troops. That helped.

And then I just had to let it go.....

Joan Marie

--------------------------------------------------------

There is more that we could, should and likely shall discuss concerning our human response and feelings in the face of GIST cancer. I feel that Susan has done us a service to bring to our attention anxieties that relate to our reluctance in expressing feelings of anger and resentment. She, Marina and others have helped us to make a beginning, and invite your further comments, posts and contributions to our Psych-Onc page on the GSI website.

So, is it good for us to complain, or should we hold back and contain our resentments in silent anger? Marina who was plucked five years ago from a hospice bed at what seemed like terminal depletion and the dismal end of a once-promising scientific career and the mothering of three very young chldren, eventually found forgiveness for herself and others during her arduous and ongoing cancer journey. So, our remarkable companion, Marina, reminds us that there is a point somewhere beyond anger and resentment, although it apparently takes some doing to get there. Marina has indeed related and described much of that "doing" in her many candid and personal posts which, along with her informative and scientific ones, contribute so much to us. If she reads these words she would probably ***** wince and say, "Yikes!" or some such.

Perhaps the worst anger for patients is that which is turned inward against one's self - in which we blame ourselves for having brought this blight upon us and our families. Such inwardly-turned anger is, unfortnately, not a rare development in the psychology off human behavior. So, let us go on record and remind ourselves that there no evidence of anything we might have done, or any behavior we should have avoided that contributed in any way to cause our GIST. We could neither have brought on or avoided our Cajal Cell mutation. But we can try to do everything possible to live with and overcome it. Anger turned inwardly, against one's self, self-blame and guilt only serve to further deplete us, I feel. We need to identify and externalize all of that inwardly turned anger or rage that lurks within us as self-blame and depression - and recover its emotional energy to use in our individual fight against GIST cancer, and not ourselves.

Mel

Tuesday, June 07, 2005

Various Shades of Depression

Mel's introduction to the topic of depression...

"Various shades of depression are often par for the course with cancer, and can affect patients as well as close family members both directly and indirectly. There are various types and degrees of clinical depression, each requiring individual evaluation and appropriate treatment. Depression can also be an understandable and realistic reaction to cancer, and to other of life's more morbid events and developments. Such so-called "reactive depressions" with known triggering events, should be distinguished from major and recurrent mood disorders with organic, metabolic, or unknown causes.

Antidepressant medications, properly prescribed and monitored, can alleviate symptoms and prevent suicides. Like antibiotics, however, psychiatric medications can be overly-prescribed as a convenient and impersonal way to avoid delving into intimate emotional problems. In today's medical market place, the easiest and cheapest way to treat mood disorders, whether or not they have a manifest situational cause, is to prescribe a pill. For busy doctors, prescribing pills seems less intrusive than probing into personal matters. Quick prescriptions for common medications are white-coat polite, and seemingly more cost-efficient and "scientific" than psychotherapies and counseling. Unlike prolonged psychotherapy, a prescription pad implies that we are quite sure we know what we are doing.

Because depressive symptoms are so frequently encountered among GIST patients, many of whom already take other pills besides Gleevec, adding yet another long-term medication may simply increase untoward side effects while the patient waits in vain for a therapeutic response. The following "vent" by Tom Overley is both a rational and emotional objection by a serious and thoughtful GIST patient to contemporary and cumulative medical temptations toward pill-slinging, much abetted, may we add, by pharmaceutical marketing practices including widespread, direct advertising campaigns to the lay public. GISTmate Tom is no slouch... He is a song-writer, poet, guitarist, a man of faith, a helpful humorist on the List, and a practicing attorney. He writes compassionately in response to a fellow GIST patient.
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Thomas Overley May 8, 2005
Tom Overley and depression


This is going to be a very controversial post...but I am no stranger to swimming with out a life jacket...Here's my two cents...and sometimes two cents is worth exactly that... I have never been a believer in antidepressants...oh, depression is real. We all know that. Scientists tell us that when a person is depressed, their body chemistry changes. Well, sure, I will go along with that. However, I think that when a person first gets depressed, they have a good reason...Five years ago I got in a terrible argument with a nurse at the hospital who started me on an antidepressant...She said, "You have cancer, you're gonna need these." I told her "BULL, I have cancer, I have every right to be depressed."

Cindy, if you have read any of my poetry or my posts over the years, you know that I too, sit on the pity pot once in a while. But I know that I can only stay there for so long because someone else needs to use it. None of us are strangers to life's disappointments. But then, that is life. I think that the secret to having your "ship come in" is to be the captain of it and take your life where you want to go. Are there things out there that we cannot control? Sure. Are there more things that we can control? You bet.

Cindy, are there things out there that you have always wanted to do but were too afraid of failure to try? People you wanted to meet, places to go? Crafts to try? Professions to conquer? People to help? Children to love? Games to play? Research to do? People to love?

Sometimes when we get depressed, we forget about the beauty of life...the people who love us, the excitement of love, learning, exploring ...and we withdraw into our little shell..and our body chemistry changes. We don't feel loved and we don't love. Sometimes we are so out of it and internalized the we don't even realize that the person who we think loves us doesn't. We become incapable of even feeling joy in a natural state.

I always feared that I would lose the wonder of life if I went down the antidepressant road. I remember telling that nurse that I would take the "lows" of life if I could continue to experience the "highs". I didn't want to take the middle road..."gimme the highs, the lows and everything in between." Like swimming without a lifejacket, I can swim faster, swim to the bottom and feel more in tune with Mother Nature...but the security blanket is gone and fear can creep in. It can also be dangerous. For me, well I have always enjoyed a little danger in my life (yet this darn GIST is much too much danger for my liking).

My point in all of this is to encourage you not to give up any of your dreams .... but feel the urgency of the need to go after those dreams. As cancer patients, we have a gift that few others realize and that gift is the present. Don't squander it on a life of regrets. We all have those. Forget it. Try not to make any more ... If your goal was to swim the English Channel, find a way to make it happen. People will think you're nuts, but wouldn't you rather have them think that and envy your "zest" for life than to say..."poor dear...she was devastated with cancer and just wasted away." No thanks. Life is just too precious to let a moment slip. (Perhaps you have noticed that I post less and less in the last year.) My excuse is that "Life gets in the way." What a beautiful thing to happen.

Cindy, take the antidepressants if you must, but let life get in the way again.
Swim the channel, hike the canyon, build a house, bake cookies, take a meal to a shut-in, weave a rug, spin a bowl or do whatever your heart tells you to do... for it is in that place where you follow your heart that you will change the chemistry of your body and lose the blues.

You may know that this lawyer has coached a basketball team, built a Harley Davidson from scratch and rode with a biker group (lol), toured the Harley Davidson factory in Milwaukee, water skied on a man made lake without a boat, snow skied the rocky mountains, written poetry and music and now built a guitar (something that I wanted to do since 8th grade) all since being diagnosed with cancer .... all things that I had never done. I work a full week .... although not as long as I did BC (before cancer) and raise three teenage girls on my own. Am I nuts??? sure...but happily nuts in Toledo, Ohio, USA.

We are cancer patients. People watch us in wonder and sometimes they wonder why we are so very happy when we have such a dreadful disease... Let them covet our fighting spirit. May you be blessed in your quest for peace.
Tom O.

PS. I know that I may take some bashing for this position. Recall that I am not a doctor and I don't play one of TV. The views that I express are mine only and not those of the LRG, its officers, board members or ACOR. They are not given to replace those of a medical doctor ... as with all therapies, one should consult with their doctor prior to taking a dose of Tom O. My friend, you have seen the dangers from the precipice of life and you know that peaks and valleys. Don't waste your life feeling sorry for the things you will not do in your life. Don't spend another minute mindlessly watching tv. Call a friend. Run a marathon. Hook a fish. Enjoy all that life has to offer. What do you have to lose? And if you should forget to take your anti-depressant pills along with you on this journey, you might just find that you don't need them. (Caveat: don't forget to take the little orange tabs or capsules...they are a necessary ingredient.)

ENJOY LIFE. REMEMBER THE FOUR Ls: LIVE, LOVE ,LEARN and LAUGH.

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 http://xanax.com/content.asp?id=1&sid=51
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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!
Jani
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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,
Mel
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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.

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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.
- FEAR IT WILL COME BACK
- FEAR THAT EVERY PAIN HAS TO DO WITH GIST
- FEAR THAT I WILL HAVE TO GO ON THE MEDICATION
- FEAR THAT THE MEDICATION WON'T WORK
- FEAR OF BEING TOLD I NEED ANOTHER SURGERY
- FEAR OF THIS DISEASE KILLING ME
- FEAR OF WHAT MY CHILDREN AND HUSBAND ARE GOING THROUGH
- FEAR OF LOSS OF CONTROL IN LIFE
- FEAR OF NOT BEING THERE FOR MY CHILDREN,
.........WHO ARE ADULTS ALREADY, BUT STILL NEED ME
-FEAR OF DYING ALONE ON MY COUCH,
.........BECAUSE EVERYONE ELSE IS BUSY
-FEAR OF THE CAT-SCAN COMING OUT WITH MORE GIST
-FEAR THAT THE CAT-SCANS ARE CAUSING OTHER PROBLEMS
.........IN THE FUTURE (ALL THE DYE GOING INTO YOUR BODY)
-FEAR OF NOT BECOMING THE FAMOUS ARTIST I WANT TO BE
(WHILE ALIVE)

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....
Ellen


----------------------------------------
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!

FEARS:

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.

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0n 3-31-05 Jeni wrote:

Fear..
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.
Jeni