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

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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

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