Kurt Vonnegut to Julie

I found myself thinking a lot about julie today. Someone on the bus reminded me of her. She had sweet blue eyes and long blonde hair in a pony tail, and seemed to be enjoying her life.

I know a lot of us may disagree on religion, the extent to which, and in exactly what to believe, how to resolve the juxtaposition of faith to scientific reason, and regarding the basic ideas of faith and worship. I am agnostic, a humansit actually, which basically means that I just believe in trying to be nice and decent, for no other reason than that it is clearly the right thing to do. What could be better? I think Julie was a humanist first.

One of my favorite authors was Kurt Vonnegut, who bumped his head and died last year or so. And I offer this little gem of an anecdote that illustrates his and the humanist's perspective on things:

I am honorary president of the American Humanist Association, having succeeded the late, great, spectacularly prolific writer and scientist, Dr. Isaac Asimov in that essentially functionless capacity. At an A.H.A. memorial service for my predecessor I said, "Isaac is up in Heaven now." That was the funniest thing I could have said to an audience of humanists. It rolled them in the aisles. Mirth! Several minutes had to pass before something resembling solemnity could be restored.I made that joke, of course, before my first near-death experience — the accidental one.So when my own time comes to join the choir invisible or whatever, God forbid, I hope someone will say, "He's up in Heaven now." Who really knows? I could have dreamed all this.My epitaph in any case? "Everything was beautiful. Nothing hurt." I will have gotten off so light, whatever the heck it is that was going on.

-KV, 'God Bless You Dr. Kevorkian'

I hope that Julie would agree that 'everything was beautiful, and that nothing hurt.' It didn't look that way to a lot of us, but if anyone could see it that way, it would be Julie.

Remembering Julie

I'd like to thank everyone for the condolences and for sharing your feelings and memories of Julie. I'd like to add a few pictures here from the memorial event a couple weeks ago, if anyone wants to send me some. I hope someone got a shot of the balloons.

Shall I compare thee to a summer's day?
Thou art more lovely and more temperate:
Rough winds do shake the darling buds of May,
And summer's lease hath all too short a date:
Sometime too hot the eye of heaven shines,
And often is his gold complexion dimm'd;
And every fair from fair sometime declines,
By chance or nature's changing course untrimm'd;
But thy eternal summer shall not fade
Nor lose possession of that fair thou owest;
Nor shall Death brag thou wander'st in his shade,
When in eternal lines to time thou growest:
So long as men can breathe or eyes can see,
So long lives this and this gives life to thee.

Wm. Shakespeare

Julie passed away this morning. To have taken such a sweet and wonderful person from her life, her family, and all that loved her, God must have wanted her very much.

"We're all travelers in this world. From the sweet grass to the packing house. Birth 'til death. We travel between the eternities."
- Prentice Ritter, "Broken Trails"

Hello

"We're all travelers in this world. From the sweet grass to the packing house. Birth 'til death. We travel between the eternities."
- Prentice Ritter, "Broken Trails"

Aunt Terry and Julie

Our Aunt Terry passed this week. We are all deeply saddened, and our thoughts and prayers go out to Uncle Herbie, and to Dana and Chris.

I'm adding a picture of Aunt Terry and Julie. I wish there were a better one.

Aunt Terry was the most stubbornly cheerful, gleefully ornery and all-around wonderfully spirited person you could ever meet. She embodied Joie de vivre' from the heart of Texas. One could not meet her and not be lightened, if not enlightened. In this way she was so much like Julie. There should be a lot more like her, like them, a lot less like the rest of us. And there should be much more justice in deciding who stays and who goes.

Julie and Goofy

I forgot to post this earlier - Julie and her favorite Disney character, Goofy.

The Black Eye

One day when Julie was about six, and I was about sixteen, I was hanging out in the living room with my friends, and as usual, Julie was there having some fun with us and wanting to play. Somehow my friend Tom got her into the old trick pulling contest. He held her wrist in his hand and told her to pull as hard as she could; and she did. When he let go, bam! She hit herself right in the eye. It wasn't very funny at the time, but after the initial cry she was a terrific sport about it, and ever since it's given us a good laugh.
Thanks to everyone for sharing. If you have a favorite memory of Julie (I'm not saying the black eye was mine, though it was - eventually - funny) please share it.

No Pain

Julie spent yesterday resting peacefully, and feeling no pain! This is great news. I am very grateful to Julie's doctors, hospice, friends, family, and the whole Belfast community for all of their efforts in getting this difficult problem managed.

Some Promising News

Julie's primary care physician and hospice are redoubling their efforts to ensure that Juile's pain is fully medicated. They have increased her baseline pain medication and ordered that break-through doses be given as often as every 30 mniutes until the pain subsides. They are also increasing the frequency of evaluations so that her baseline doses are maintained at a level that exceeds her increasing tolerance.
I'll write more later when I hear how she's doing.
This is a good start.

Julie's Pain

Our parents arrived in Maine today to find Julie once again, or still, in horrible pain. When they called I could hear her wailing, clearly in excruciating agony. We thought this problem had been solved, but apparently it has not been, nearly three weeks after she was discharged.

What is most important is Julie's quality of life for what are most likely the last days or weeks that she has. Metastases to her hips and back are causing her tremendous pain, and everything possible must be done to eliminate that pain. Tolerance to morphine and other narcotic pain medication builds fast, and keeps building. The doses can get very high, but it does not matter. No dose is too high that does not completely stop the pain. Only at doses well above the point of controlling pain do adverse effects, diminished sensorium, or addiction occur.

To this point the medication she has been receiving has not come close to consistently matching her pain, and it's heart-breaking and maddening. The first rule of hospice is that there be no pain, and that's not being done.

Video - Julie, Handle With Care

I put some pictures from Julie's life and family together with a nice song by the Traveling Wilbury's (you know, George Harrison, Roy Orbison, Tom Petty, Jeff Lynne and Bob Dylan).

http://www.youtube.com/watch?v=2EX-tim6tiw

Julie

This is a site for Julie Clapp (DeLoid), my little sister.

To the best of my recollection, about 18 months ago she came up a bit lame after skiing; had some pain in her hip and back. It persisted for a while, and eventually prompted her to get it looked at. An X-ray didin't show much, but it was a wide enough X-ray that it included the lower part of her chest, and there was something there. A few weeks of more X-rays, CT scans, MRI's and a biopsy and she was diagnosed with stage IV adenocarcenoma of the lung, AKA non-small cell carcinoma, the one that isn't related to smoking. She never smoked. She was 37.

She got into a phase II clinical trial with an EGFR tyrosine kinase inhibitor drug (erlotinib/Tarceva) at Dana Farber, and in a few short months the drug wiped out almost all of the cancer. Some, just enough, of the cancer persisted however, resulting in a pericardial effusion (fluid around the heart) that required a pericaridial window procedure (an opening made to allow the fluid around the heart to drain into the larger chest cavity) that was performed at Brigham and Women's Hospital, about a year ago now, I think. Otherwise it was smooth sailing for a while. She was Dana Farber's star patient.

Then, on a regular visit with scans, it seemed that the cancer had mutated and was no longer responsive to tarceva. That was last July.

But there were other trial drugs that were not susceptible to these mutations. They were "Permanent" EGFR Tyrosine kinase inhibitors. Julie was accepted into a trial of such a drug, though it was still in Phase I, which is quite a bit different. After several weeks of trial dosages, skin biopsies and dozens of blood samples, she was set to go.

But a few months earlier, Julie had started having symptoms of confusion, and difficulty finding words. It was almost imperceptible at first, but it worsened, slowly and insidiously, until it was difficult for her to talk at all. Ultimately she was diagnosed as having a paraneoplastic (caused by cancer) autoimmune encephalitis. Apparently some antigens on or within her cancer cells had activated cytotoxic T-cells or antibody-producing B-cells that also recognized similar antigens on her neurons. The immune processes that normally identify and kill infected cells or tumor cells were now directed at her own brain cells.

Treatment with large doses of steroids and Immunoglobin, that sometimes help in other autoimmune disorders, were ineffective, as they usually are with autoimmune encephalitis. Plasmaphaeresis has also failed with these cases. This suggests this might be a T-cell mediated process - though it seems no one has tried T-cell modulating therapies for this disorder - yet). The only thing that sometimes has been shown to at least slow the deterioration is to completely erradicate the tumor cells, which is nearly impossible in any case, and because of Julie's weakened condition she was no longer a candidate either for a new clinical trial drug or for chemotherapy, so her cancer must for now be left untreated, and erradicating it is not an option.

In the last few weeks Julie's condition has continued to worsen. Clinically she is in a moderate to severe coma (glasgow ~8-10)

The best doctors in the world from Dana Farber and Brigham and Women's hospital, and the scientific literature published by the best researchers in the world, clearly indicate that the damage is irreversible, and will continue to progress. While we can hope and pray that by some miracle she will recover, as someone with a medical education who has spoken with the doctors, and has read the literature, I have to say that the outlook is incredibly bleak, and that we must prepare for what is most likely inevitable, and do everything possible to maximize the quality of life for Julie for whatever time she may have remaining.

Welcome

I hope this forum is usable enough to serve as a forum for Julies family and friends. I think it's easy to add a comment, picture, video or whatever. So please join in.

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