Thursday, May 24, 2012

Pepperoni Pizza Please

Yesterday afternoon a group of four people met to discuss Evan, his disease and decide upon a course of action.  It was 90 minutes of discussing Evan's health, mental status, medications, past results, and location, location, location. While Evan has been a valued member of his own treatment team, this time he sent a delegate beside his parents to represent his views. Evan's war right now is being fought on 2 fronts: Depression and Pain; and while he is making good progress on both he is still in a dark place.  What follows is a summation of that discussion.

Love, Hope, Peace and Joy all bound together within the complex web of Faith. To a certain extent we are able to wrap our mental fingers around the intangible concepts of: Love – commitment to placing a higher value on the life of another than on our own; Peace – a place of quiet confidence from where we are able to face the tough situations and decisions while being comforted that whatever the choice the outcome will be acceptable; Joy – to hold a position of satisfaction of purposes fulfilled regardless of or in spite of any mental or physical status; Faith – being confident in what we hope for and assurance about what we do not see.

Hope is much more difficult to frame. We know how it feels when it’s present, and we know what it looks when it isn’t. But if we presume that the presence of Hope is yellow and warm, then its absence is cold and dark. When Hope is realized, it is no longer Hope, it is Joy and Peace and Love, and our Faith is kindled by its realization; but when Hope is absent or worse robbed from us, the depths of cold and despair know only one true end – death.

And so it is easy to see that as one holds Hope in a Faith, as the origin of that Faith is vindicated by both the presence of Hope and the results of its maturing into Love, Peace and Joy realized. If one holds fast to Science above all things, then one might wait an awfully long time for the meaning of life to be calculated through an equation to be 42. The scientific process is relentlessly slow, a painstakingly boring in its incremental march toward universal knowledge. In Evan’s case there remain options, but the no remaining options have a scientific basis for success, it has come down to an equation of the gut instinct of the Doctor most familiar with the disease process that afflicts Evan.

For those who look to the Faith of their fathers for a medical intersession of a miracle there has been an apparent lack of miraculous response from heaven. No sudden healing, no command to get up and walk, no shrinking of tumors, only a terrible feeling of hopelessness. We have seen it first hand in the overwhelming of Evan’s ability to remain resilient in the face of a disease that continues to rob him of nutrition, oxygen , and the very will to live. Until . . .

Until the medical community sets pretense and data capture aside and looks to holistically treat out of compassion born of humility. Until cousins sit and chat about things that interest Evan, not curious to find out what interesting things have been happening to Evan. Until a surrogate big brother plays Lego for the sake of playing. Until an Uncle just sits and chills expecting nothing but that time should be allowed to pass. Until Evan read cards from 25 states wishing him courage, good tidings, love and encouragement – “It’s good to read such nice things, it makes me happy”, says Evan.

Hope is not found in medicine and science, but medicine and science can be parts of Hope. Hope is found in not accepting death as a forgone conclusion, but living life as it is today. Hope is not found in past successes or failures, but in realizing that the journey made smoother by learning is a path toward Hope. Hope is not found in a new drug, a current therapy or a future treatment; but a new drug working in concert with present and past treatments brought together in a novel approach does offer hope.

But the truest Hope is found in the combined hearts of all who have known Evan or have come to know him by these posts; it is in your hearts that you hold out all the Love, Joy, Peace and Faith toward him in the Hope that he will get well. As this process has stripped away reliance upon science and the crutches of formalized religion; what has been left is the art of medicine in a seemingly arcane method of weaving knowledge with instinct woven into a tapestry of love and compassion that has been held together with the threads of your thoughts and prayers.

Time has never been on Evan’s side, and it seems that this adage remains true. But we would ask you to consider this reality: If time marches relentlessly toward a future, a future Evan wishes to embrace; should we not engage the time we have with the living of life rather than the avoidance of death? Do we Hope for a future without death, or do we Hope to live Life to the fullest? Does Hope even care about such large and ponderous existential ideas; or is it simply concerned with a desire for pepperoni pizza for dinner tonight?

Thursday, May 10, 2012

A Picture is Worth a 1000 Touches

It would be safe to say that there has been resistance to writing this post for some time. But the images that were taken yesterday were reviewed today. Evan’s weight loss has not been caused by nausea or lost appetite, but by the robbery of all nutrition and energy by the tumors in his body. Any Registered Dietician will tell you that a 4000 calorie deficit/day while exercising to lose weight is unhealthy, but to lose a pound a day while doing nothing points to a much bigger problem. That problem was painted in stark terms and images today. Not only had the main tumors grown together and bigger, but Evan’s lungs lit up like the neighbor’s spruce fir decorated for Christmas. And to add insult to injury, the main mass in his back has started to encroach on his spinal cord in a speed and manner that is of primary consideration.

The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.

Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist.

Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.

On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.

If you would like to mail Evan a note of encouragement,

Evan Coleman
1032 Newburgh Cir.
Raleigh, NC 27603

Wednesday, May 9, 2012

It's Cold Outside

It’s cold outside. It’s raining outside. And we’re hurting inside. We’re fractured and cracked, broken and beaten, and every step is like walking on the glass that was our armor. A beam of light is flashed outside. While a flash of light beams inside us, on the pain that seems to keep us dry. There’s a game on TV, two guys care but cannot speak, But who really cares about the Heat. This is NIH.

Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.

Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.

Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.

Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.