Monday, June 4, 2012
And for a small digression in the celebration of life: the origin of H E double hockey sticks. At some point in the past the extended distaff side of Evan’s house has felt that the use of the term ‘Hell” in actually naming the place of eternal resting place of the damned souls of this world was tantamount to high blasphemy and use of the actual word could potentially condemn the user to permanent reservation to this warmer retirement locale. In deference to the concept that a vulgar mouth is an uneducated mouth and given the propensity of the writer of these posts to avoid the difficult subjects, it has been deemed necessary by the editorial board to both use H E double hockey sticks and to then explain what that means and how it came into use.
All of the above is a simple summation of the fact that Evan is very much alive today, that we are all cancer survivors of some measure, and that we should seize and celebrate life to the fullest at every opportunity. Each day thousands of people will succumb to cancer, but for today as you read this you are, and we are, surviving. Surviving not just by living, but by living this day to the fullest of our ability as we seek to lift the burdens of those around us.
One post three years ago detailed that each span of time had the opportunity to render good situations, bad circumstances, and outright ugly results. For the sake of repetition, it was decided not to reuse the title, but the last week in Evan’s life is best framed in those simple terms. For any possible excess angst related to the ‘bad’ section to be discussed, we advise the audience to look away, cover your ears or enjoy the juicy descriptions of some of the relative stupidity that confronts Evan on a near daily basis. Please remember that ignorance can be educated, but stupid is a lifelong condition.
For the good: Evan has had a couple of his best days in the past 2-3 months in the last week. He has moved from one small meal a day to 2 plus snacks, as a result his weight may now stabilize around 88 lbs. He has voluntarily gone foraging for food, and ventured from his self-imposed seclusion to active engagement of people to facilitate getting things that he wants. Most importantly from the caregiver standpoint is that he has re-entertained the concept that he was in fact borne for nine months by his mother and not hatched under a rock or via incubator. This is equivalent of nothing short of a breakthrough in the Israeli-Palestinian conflict, and given the general nature of the mother-son teenage relationship this breakthrough in such short time is being considered by the Nobel Academy committee for both World Peace and Medicine.
The week was capped by a successful hunting trip in the local Lego store with the pelts of 5 new models being prepared by the taxidermist for display. The trip was made especially memorable by the presence of Amy Arundale, a family friend who just happened to be in DC for the day and stopped by with hugs and kisses sneaked past undeclared at the NIH border patrol and customs agency.
Claims for the source of these improvements might have come from the end of radiation therapy, new dosing of anti-depressant, better parenting, tacos 4 nights out of 5, dumb luck or divine intervention. But since Evan isn’t in a research study anymore and is just in the battle for his life, no one cares, most especially him. Sometimes life is just better, and you are glad for that just because it is.
And now for the bad, knowing that you have been forewarned and forehumored so that you do not pick up the device you are reading this on and throwing it the nearest wall/bus/asphalt surface. It should be a foregone conclusion that when a family is faced with preparing for end of life decisions that everyone would seek to be as helpful and supportive as possible. And for the most part they are; however, for your amusement let this be a first forum on some of the inanities that we have faced while approaching hospice through our soon to be ‘prior’ North Carolina medical gatekeepers.
Hospice is intended to provide patients and their families support at the greatest time of need as a potential end of life event becomes a present reality. However, some people believe that this is Jack Kevorkian territory in that if you ask for hospice care you should want to die and as a result should if not doing everything to take your own life, you surely shouldn’t be doing anything to prevent it happening as soon as possible. It has been shared that because Evan will continue to take chemotherapy drug to facilitate the highest quality of life, and because this chemo (like all the others) might actually save his life, he is not eligible for hospice care. In the parlance of the day, WTF?
So as we interpret this interpretation of the rules, if you are seeking hospice care and you have a headache, use of aspirin would eliminate a person from consideration because it might stop a potential heart attack. There is a very popular tweenager game called ‘Would You Rather . . .?’ where two diametrically opposed situations are presented as extremes and you are asked to consider which you would prefer to do. One such question: Would you rather eat an 1/8th of an acre of grass or drink a 3 ft by 3 ft by 3ft puddle of rain water? Our question from the hospice: Would you rather Evan face the consequences of 30+ tumors in his lungs or . . . ? Does it really matter if you deny the person the dignity to die in peace and instead force them to suffer as they go? Arrrrggggghhhhh!!!!
Assuming you still have a functioning e-reader at this moment, we shall arrive at ugly, or the funny, or the downright – are you kidding me? Late Friday afternoon a series of major thunderstorms ravaged the Washington DC area, and NIH was not unaffected. The Children’s Inn which sits on this approximately mile square facility has been Evan’s home away from home for 7 of the last 10 weeks. During this time the Inn has been undergoing a series of improvements and upgrades including the installation of new carpet and Google TV in each of the resident’s rooms. Additionally, the exterior playground is being prepared for a major upgrade this summer.
The playground design team, KABOOM!, only does one playground a year because of the scope and intensity of the design requirements for each project they undertake. At The Children’s Inn the design process had to accommodate infants to adults in a manner that anyone regardless of circumstance might find some measure of play, peace and life enjoyment when they are in the playground. This is no small order for the healthiest of populations. On Wednesday night the design team came to dinner and in an interactive presentation revealed what was going to happen on the back hill behind the Inn. There were balloons and bandanas, markers, paper and ideas were shared. Many of the kids wanted to have some form of water features in the playground, but due to design/health limitations none were going to be added, until . . .
In an effort to avoid flooding from the hill behind the Inn, the playground was being updated to among other things include a large storm drain for runoff that had plagued the Inn in the past. As terrain modifying construction had already begun, the storm drain in place, there was a desire to reduce the silt going into the drain, so it was covered with a fine mesh, while the rest of the hill was covered with plastic to also reduce the runoff. This had the effect of creating a pool outside the back windows of the main room of the Inn. As the rains came down, and it did come down in torrents, the rainwater runoff created a 4 ft pool of rain water.
The NIH Fire Department came and pumped out the pool, the maintenance man went knee deep into the remaining water and uncovered the storm drain, which when not covered, worked quite well. And the residents of the Inn had quite the family night watching an emergency unfold before their eyes as they gazed on from the balcony overlooking the great room flood and stream of 2012 at The Children’s Inn.
What does all this mean? It means that so long as you can see life as it is lived, you can celebrate today. There is an adage that many goalkeepers and weekend warriors ascribe to, “The pain lets you know that you are alive” but if all you have ever known or all you have come to know is pain, you never get to know you are alive until you smile until your heart is warm or laugh until tears run down your face. Yesterday we lived, so today we are cancer survivors. How about you?