William G. Bartholome, MD, MTS

ACOR EC-Group Posts: March, 1999

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Date: Tue, 2 Mar 1999 10:01:03
Subject: Reply to Mary

Mary,

Your post serves as an important reality check for those engaged in this conversation. For me, the central focus of our discussion should be on sharing with each other our experiences "living with EC." Some of those participating are participating on behalf of those who once "lived with EC;" sharing with us the perspective of the real heroes in these "illness tales"--the care givers, the "supporting cast" who are left to "construct lives" in which the person with EC is no longer "present to them in the flesh."

Death must be a "major theme" in our conversation since with this particular disease, mortality rates are very high. Many of those participating in this conversation are doing so from the perspective of persons with "terminal illnesses;" they have the disease that will "take them to their deaths" absent an fatal injury from an accident. Making sure our "affairs are in order" should be part of this "theme."

I think our conversation if far too dominated by the theme of "doctors," hospitals, procedures and medical treatments. In short, we have allowed our dialogue to become "medicalized" to an extent that is not "healthy"

In terms of this issue of profanity, I am a very big fan of George Carlin. So......don't get me started on this one!

bill bartholome

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Date: Tue, 2 Mar 1999 11:20:33
Subject: Reply to Karen re Steven

There are a number of issues raised by your post that don't make sense. Why is he jaundiced? Why does he need a tube to "drain fluid from his stomach?" What is the nature of the fluid that accumulates "outside his lungs.?" Have multiple tests for cancer cells been done on this fluid? Has the fluid been cultured to detect the presence of infectious agents? Almost always such fluid is related to cancer and not commonly to pneumonia. The fluid associated with pneumonia almost always goes away by itself or will develop into localized pockets of infection (called an empyema).

Opening up the chest to drain such a collection of infection would NOT be called for. Placement of a tube in the collection to drain the pus through the wall of the chest might be needed.

Sounds like you should strongly support decision to go to the Univ. of Penn hospital. Doesn't sound like they know what's going on. Would defer all surgical decisions until he and his wife know exactly what is going on. What is causing each of his symptoms and what the plan is for each of them.

bill bartholome

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Date: Tue, 2 Mar 1999 13:00:44
Subject: Reply to David's questions

David,

1. Given the extent of your disease, cure is unlikely. Surgery at the conclusion of the Chemo + radiation may make sense in a small number of cases to remove areas of "residual disease." However, I wouldn't count on this being an important part of the management of your disease.

2. The treatment that you describe is appropriate, commonly-used "front line therapy" for this disease. In the event that you got to a place were there was "no evidence of disease" left, you would likely be followed by scans until you developed a relapse or recurrence of disease. At that point in time a variety of "salvage" or "second line" treatments would be discussed, primarily involving other chemotherapy drugs. If you have evidence of residual disease at the conclusion of your Chemo + rad, there are oncologists who would recommend your utilization of second line chemotherapy approaches at this time; or encourage you to participate in the study of new experimental drugs or combinations of drugs that are being studied in persons with EC and related diseases. Many people on this list have extensive experience with multiple chemotherapy agents that have been used to treat their EC. The archives contain a wealth of information re these drugs and drug combinations. There are also those who would encourage you to consider palliative or supportive care only in the event you had residual disease after Chemo + radiation.

3. The common claims by one major medical center that they have more advanced and better scanning equipment than other centers is usually bunk. Probably not essential that you press the issue. You could ask that the actual scans themselves be shared with the people you end up using for treatment back in Ohio. They could then give you their own, independent reading of the films.

bill bartholome

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Date: Tue, 9 Mar 1999 17:12:57 
Subject: Reply Vicki re hospice; Update on Bill and Pam

Vicki,

Your evaluation of this situation is very appropriate. Would contact hospice directly. They will be able to help you procure the necessary medical referrals. The guidelines for Medicaid hospice benefit talk about "six months or less."

Pam and I have encountered another hurdle in our adventure with EC. About ten days ago, I began to experience dramatic increase in my pain level and the development of a new pain in my right shoulder and back. When the pain failed to respond to even high doses of narcotics and I began to lose sensation and function in my right hand, we bit the bullet and took me in for more scans. Well, the scans revealed that my disease has taken over the 7th vertebral body of my neck...is growing through the bone into the spinal canal..and putting pressure on my spinal cord. Ugh!

We were told that no treatment would mean increasing level of pain, disability and paralysis from the neck down in four to six weeks. The only intervention that we have been offered is palliative radiation to the spine. I just completed the fourth in a series of ten treatments. I now KNOW what you have all been talking about when you talk about the energy effects of radiation. I'm as weak as a kitten. Have been unable to even read the digests much less go to work.

Also got into major bowel troubles with my oral narcotic drug, oxycodone. Was taking 30 mg of the sustained release form of the drug, when my intestine simply stopped working. So, I've had to come off the narcotics for a while so I can get my bowels to work again. Am also on decadron to keep down the swelling in the area of my spinal cord and to prevent additional swelling from the radiation treatments.

So, the cancerous Bill continues to make steady advances on me. Keep us in your hearts.

bill bartholome and pam

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Date: Thu, 11 Mar 1999 21:54:38
Subject: Doctors and Internet Support Groups

I know one doctor who refers everyone he knows with EC to the Internet.

Dr. Bill

Seriously, docs are very concerned re the quality of information people get in support groups. Little do they know how seriously we take our obligations to attempt to give each other the best information we can get our hands on...and the kind of support that only a fellow sufferer can give. I have learned far more about this disease from this group than from all the docs I work with...and I work in an academic medical center.

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Date: Mon, 22 Mar 1999 12:23:58
Subject: Reply to Vikki and Roxanne re teary eyed husbands

Would strongly support caregivers and other support folk seeing tears as nothing more than the natural expression of grief in a person facing death. Dying involves doing this kind of "grief work." Those of us who are fortunate enough to be able to have some time to live with our terminal illnesses, have the opportunity to experience this kind of grief work...grief over the end of one's self...one's loss of self.

Do NOT see tears as a sign to "back off" or stop talking. Encourage the crying person to continue talking while crying...try to be as comfortable as possible in the face of the grieving person. Obviously, caretakers and support people have their own grief work to do. But, these are problems and "tasks" that can and should be kept separate. It is not necessary (and usually not very helpful) for everyone to do grief work simultaneously. And, it is important to remember that there is not need for survivors to hurry their own grief work...there will be plenty of time for survivor grief work.

I think it also important for us all to realize that there is a limit to the extent that mental health providers and psychiatric drugs can "treat" or "help" dying people deal with loss and separation. Dying involves issues for us that transcend the psychological.

bill bartholome

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Date: Tue, 23 Mar 1999 11:23:54
Subject: Reply to Tobi

Control is a major issue. Being a cancer patient involves a dramatic loss of control. Strongly suggest that caregivers to your father-in-law work closely with him to develop a set of goals for his treatment. A willingness to "fight" is not an adequate statement of goals of treatment. Your father-in-law has a terminal illness. This means that traditional goals of treatment like cure or getting rid of the cancer or the like will not work in his case.

Also not at all clear what the goals are of his radiation treatment. Given the often overwhelming burdens of cancer treatment, it is very important for everyone to be very clear about why things are being done and what expectations are reasonable.

bill bartholome

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Date: Tue, 23 Mar 1999 11:35:47
Subject: Update - Pam and Bill

My spinal cord symptoms (pain and loss of function in my right hand) did not respond to radiation treatment. Ended up doing 12 treatments (maximum dose my spinal cord could tolerate) instead of 10. Finished treatment last Friday. (Free at last!)

Have officially signed up as a patient of our new Palliative Care Service. Hope that my status as a palliative care patient will help protect me from getting sucked back into the cancer patient role.

Very frustrating that I have experienced no benefits from this ordeal; and have experienced the full range of burdens and side effects. Still to weak to do much other than get out of bed. Have no clue re when (or even if) I will be able to return to work. My voice is horrible...the vocal cord paralysis plus the radiation damage to the larynx has left me with little more than a whisper. My throat and epiglottis are so sore that it hurts to swallow my own saliva!

Did manage to get a major project launched. Spent two days with Bill Moyers and his crew from PBS working on a series of specials on end-of-life issues. The series will actually not air until the year 2000, but it was good to get the film in the can as they say.

Keep us in your hearts. Continue to do this most important work. What we offer each other as fellow sufferers on this road is invaluable. People will look back at this time and this kind of forum as a major breakthrough in how human beings deal with the burdens of illness.

Peace,
bill and pam

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Date: Wed, 24 Mar 1999 11:10:39
Subject: Reply to Linda re Cancer and the "Why?" Question

Linda,

I large part, your analysis is right on target. More people (particularly in so called "developed nations" are NOT dying of other things at younger ages; thus living long enough to develop cancer. From one very "real world perspective" if we were to ever "win" the war on cancer (which will not happen), we will all live long enough to experience the disintegration of the self called dementia. Ain't life grand!!!

In a sense, we all "need a disease" in order to experience a good death. For many Americans, cancer may be a "good road" to death. It is one of the longer roads. It is also one which is quite predictable in terms of the natural history of the disease. It is also a disease that fits well into the hospice model of home-based care of the dying person. It even fits the increasingly desired Baby Boomer model of conscious dying. We have developed very reasonable forms of palliative care of cancer-related symptoms.

So in an important sense, cancer may be an old woman's friend in much the same way we used to say, pneumonia can be the old man's best friend.

Food for thought.

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William G. Bartholome, MD, MTS | Back to Top
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