Dear Diary - i can't breathe . . .

Wednesday June 20, 2012 – Winter Solstice, I think


Today was not a good day. It could have been worse, although I am not sure how. Late in the afternoon the pain really started getting to me, which really sucked because I wasn’t doing anything but watching TV. First it was under my breastbone, then I thought I had a bladder infection and finally the hammer to beat all nails, my back started to kill.

So I took a shower to try and let my body reset itself, besides it would soon be time for my pain meds. But as I got out of the shower I suddenly realized I couldn’t breathe. No way to take a cough, no way to take a deep breath, the best I could do was pant like a dog. So with a towel over my shoulders, I collapse onto the bed on all fours and I must be breathing 100 times a minute, and I feel like dog s^&*! Pain still beating away, can’t catch my breath, and mom looks like she’s seen a ghost, but she goes and gets dad.

Dad’s not the brightest light bulb in the box, but he’s faithful like a Labrador Retriever, and he kneels beside me and asks the dumbest question, “So, how are you doing?” what is blind as well as stupid, I’m breathing like a racehorse after a mile and a half, I look like a scarecrow, I must be white like snow, and he’s asking how I’m doing. Too funny, if I wasn’t struggling to get my breath, I’d be ROFLMAO. My measured response, one word at a time between pants, “Something went wrong today” I then tell him about what happened and over time I start to breath more slowly.

So now my pain medications are being increased to three times a day, and my dad set up this oxygen machine. Now call me stupid, but isn’t there oxygen in the air, what the heck is this machine gonna do except push air down a long tube into these two hard prongs that are supposed to go in my nose. WTF, who designed this monstrosity of masochism. This is gonna work like a lead balloon. I want to say, “Dad are you F-ing Kidding me, this makes me feel like a prize pig with a ring through its nose, certainly not better” I don’t know if he can read minds, but he came up with a different technique, seems fairly bush league if not down right wrong, but those Puff the Magic Dragon nostril hooks are not going back in my nose. No sir!

By bedtime I am no longer panting, and I think I’ll sleep better if I can remember who I am and which elbow is supposed to sing the National Anthem before prayer time. Drugs are so double edged, but I’m too sleepy to discuss this anymore.

Thursday June 21, 2012

Morning meds come too early when I am not sure if I slept. I really wish people wouldn’t look at me, it’s just so annoying to be the center of someone else’s attention when clearly they have their own issues that they should be dealing with before me. As I drifted into that morning medication stupor, I wonder why more men don’t sing Happy Birthday in a falsetto voice with a blue tint.

So it half past noon and dad has the temerity to tell me that people are coming by the house today. Can’t he see I’m in no state for visitors, I have no pants on. Next thing I know, the smoke smelling oxygen machine has been replaced – nice! I sleep some more, then that good old Lab comes with those puppy dog eyes and asks if I want to come see the nurse or whether the nurse should come to me. Once again, sharp as a tack! Can he not see I couldn’t stand to save my life? What makes him think I’ll take the stairs, besides his rendition of Happy Birthday sucked. Pants on, and enters the nurse, possibly named Cratchett, she starts apologizing for taking my blood before she’s even put on the tourniquet. I’m not sure which Cracker Jack box held her license, but with the deft touch of a butcher with a bandsaw she managed to get the needle in and get the blood out. Did she not understand I didn’t want her apologies for taking the labs, just do your job, do it quickly, efficiently and then GET OUT OF MY SPACE, AAARRRRGGGGGHHHHHH!!!

Old Yella went out for a run, and came back with more instruments of the inquisition, not just prongs up the nose, but a full mask of suffocation. Sweet, I can go out screaming into the baffling effects of a soft plastic mask, If I could actually get a decent breath. Oh yeah forgot to mention, gained some weight this week, and temp was okay. Pulse Ox whatever that means was in the low 90’s and my pulse rate was above 120; but I wasn’t gasping for air. Too bad I’m not in the army, ‘cause this sounds like a time for a good Huahh! Or some such other warcry of victory.

I have to say that the oxygen does seem to ease my stress when certain individuals, specifically the devil spawn that is ‘my’ dog. Tonight I shall sleep soundly to the hum of crickets warbling Aida in the Key of G, at least that’s what I think the oxygen machine sounds like.

Friday June 22, 2012

Not sure what happened today, but it just kind of went by in a sedated shallow breathing haze. They only timed I felt fully in the present was when ‘my’ dog, spawn of Satan, Pixel, Hound of the Coleman’s entered my space one too many times. I lost it, couldn’t breathe again, just panting through tears of anger and frustration, no position of comfort, just hate and hurt, haze and hack. The Lab got angry and is yelling to get my attention, “Put on the oxygen” he yells, “It’ll make you feel better”. “No it won’t I yell back defiantly”, until out of breath I relent as he and my mom leave me to rest in the dark.

I love my mom so much it hurts, and I hate pushing her away, but I can’t stand her looking at me. I can’t stand looking at myself anyway, bad enough I’m a teenager, but I look like some B movie zombie or a prisoner from a genocide camp. She just wants to help me, I know this, but it just hurts so much to see the pain in her eyes as she reaches out to touch me and try to bring me a comfort that I am not prepared to receive because my defenses are so wound up.

Sleep is easier and easier, and sometimes I fight between wanting to fall into fitful pharmaceutical sleep and a fear that I won’t wake up at all. Weird, huh! Good Night Diary – See you tomorrow?

Don’t Cry for Me Argentina!

On July 26, 1952, Eva Peron succumbed to cancer after a long battle of surgeries and experimental chemotherapies. She was only 33 years old, but had become a political icon and champion of the underprivileged. After her death, the country of Argentina came to a standstill, and so powerful was the imagery and vision she had brought to her people, that for almost 20 years the military dictatorship (that had arisen in the vacuum she left at her death) banned any private pictures be kept by any any Argentine citizen, and her body was shipped to Milan, Italy so as not to be a rallying point for the impoverished masses.


Andrew Lloyd Webber and Tim Rice reintroduced the pop culture star status to the young champion of her country in the musical Evita. 60 years later a 13 year old is about to succumb to cancer, and we know that his passing will bring tears, and sorrow and heartache that will appear unfixable. But this is where we turn to what both Eva and Evan desire. Don’t Cry. Know that you are loved just as we know you love us. Life is a series of dichotomous choices: Love – Hate, Anger – Remorse, Happiness – Sadness, and of course Life –Death. Not often considered are the opposites of Fear – Faith, Hope-Despair, and Joy –Depression.

Our approach to Evan’s life has been to seize hold of the former and leave the latter to later. As we look at this summer there is definitely a nervous anticipation of a homeowner approaching the terminal payment of a balloon note. But we cannot know the timing of final breaths anymore than we could have predicted that you would be reading this note. But we know when the first tears were shed, and we know when the first laughs were heard; what we ask of you is that you try not to hold onto the tears, but revel in the smiles and the laughter of life. You will never know when they will end so long as you seek to live your life to the fullest.

We have heard the questions asking about Evan and how he is handling this situation. We have heard the questions about how we are handling this situation. But now we must ask you how you are handling this situation? When you see us, do you avoid eye contact or is eye contact tinged with pity? Are we worthy of a smile and memories of joy, or will you merely see an inevitable end of life as a tear rolls down your cheek?

In the past 2 weeks we have felt that the hospice model we have been dealing with is a cross between the Key Stone Cops and the inevitable run around of a 3rd Party Warranty. It has been a tragicomedy of Shakespearean proportions. As of this afternoon, we will have seen 8 people in 7 different visits of no less than 2 hours each. Our two highest priorities have been to ensure blood draws at home so that energy for out of home activities can be reserved for more fun things than a 3 hour commute to UNC; and to ensure that there is a counselor available for Evan’s 87 yr old Grandfather, Rev. Pat, who has lived with us for almost a decade.

It seems amazing that so far we have answered the same questions on the same distressing subjects so many times that it seems there is just a fundamental attempt to desensitize us to the impending death of our son by repetition of the obvious. Best question every single time, “So how are you dealing with this?” It appears as if there is no communication between staff, no universal information update, or that the little computers they carry around have no way of sharing information with each other. This is before we get to the question of whether they have actually read up on what Evan/we have been dealing with for 4+ years. I suppose the ongoing referral to read this blog is too much to fathom.

Morgan, our amazingly gifted and insightful daughter, has pointed out that the cool, calm and composed parents are not what anyone outside our family expects to find. Those people who have to visit us for professional purposes are often so distressed with our impending loss they are rendered discombobulated, at sixes and sevens. So much so that our last visitor fell back on classic religious platitudes, and as a result she was almost shown the door. She was saved by the return of a mischievous beagle who so rattled her cage that she left of her own account. (18 hours earlier, Snoopy had jumped our perimeter fence and chased after a deer. He is 13, the fence is 4 ft high. It was a phenomenal event only topped by his mournful baying at the stranger saying, “God only gives you what you can handle”. We are guessing that the new pair of underwear needed by our latest visitor indicated that God may have exceeded her capacity at that moment.)

Note Bene: Every person who comes to see us/Evan has only the best of intentions for all of us. Evan is not in any pain beyond what he has tolerated day in and day out for the past 4 years. And the provision of human foils and foibles for the verbal rantings of the writer is truly a gift from God and provide ample evidence that life must be lived in the moment; and not with bated breath for the inevitable but unknowable cataclysms that litter life like a mine field.

Next point of aggravation/humor: The impending need for oxygen therapy. Many people who enter hospice, that is the period of time in which they know they will die, require some level of supplemental oxygen so as to best function. Many people would include the aged or adult infirm; Many people would not include vibrant teenagers who desire to live life to its fullest in a mad thumb your nose at the devil sort of way. So when a trend of declining Oxygen saturation was noted, a simple inquiry into the simplicity of establishing oxygen therapy was met with a standing order for oxygen for hospice patients. Great, wonderful, no hassle, just like that it would arrive the next day.

Fast forward – Lively active teenager (Cancer patient or not, given enough anti-depressants, McDonald’s Chicken Nuggets, and Dr. Pepper you’d be lively too) needs to get out of the house, has trips to Dallas and Bethesda planned, with a week at Victory Junction Cancer Camp (Play Nascar, boating, fishing, archery, horseback riding, etc – No one talks cancer – Camp is fully Medical staffed) And certain questions come up. How do you take Oxygen to Dallas? How will Evan get around camp? Will there be enough oxygen for a car ride to Bethesda?

So the oxygen arrives in the form of an oxygen concentrator. The small unit weighs 35 lbs, plugs into the house electric, and is about as portable as an anvil. It is the ultimate in house arrest gear for the dying. Yes sir, you can live on all the oxygen we can get you within 50 feet of this little ball and chain, but that is the extent of the fullness and quality of the life you have left remaining. So we find out about a portable battery operated 3lb unit that will go anywhere including airplanes. But the oxygen company is not allowed to deliver those units to hospice patients – too expensive, doesn’t fit the patient model, etc. Yeah there’s gonna be a battle. But you can already guess who is gonna win that one.

And now we arrive at the ultimate irony of the last 7 days. When we first came to North Carolina we sought out a gerontologist for Rev. Pat so that as he aged he would have the benefit of knowing his doctor as he approached the end of his life. And he found an amazing doctor who he will sit and chat with about the most fascinating subjects. And you’ll never guess who the medical director is for Evan’s hospice provider?

The answer was here all the time

I love you and hope you love me



Don't cry for me Argentina



Don't cry for me Argentina

The truth is I never left you

All through my wild days

My mad existence

I kept my promise

Don't keep your distance



Have I said too much?

There's nothing more I can think of to say to you

But all you have to do is look at me to know that

Every word is true!

Do not cry for us, do not cry for Evan, do not cry for yourself. Cry for love, cry for happiness, cry for joy. But above all else Live your life today and share the joy of the love in your heart with all who you meet today.

PS. Regarding the humorous paragraphs above taken at the expense of a number of hospice workers. It is only fair to publish the retractions and errors. It is essential to remain humble and the writer put pen to paper too quickly, but for the sake of literary license and continuity they remained in the body, but will hereby be remedied. First, the chaplain who came today to speak with Rev. Pat was ex-Army and was the model of both efficiency and compassion as he not only took the time but also the interest and initiative in the need for a portable oxygen concentrator. Second, the ‘Dog’ lady went back to the office and took up Evan’s cause to maintain his independence and mobility arguing for portable oxygen.

That would normally end the situation, but it turns out they sent portable tanks that cannot be taken on airplanes. Unfortunately, the column inch maximum has been reached otherwise the proposed alternatives would cause you to weep from the length, the frustration, the humor and the sadness of the resulting conversations. Perhaps next time.

D. N. R.

Line of the Day: “So I gather you’re not happy about entering hospice”

This was the response by a friend to the angst that had been share regarding the nature of the hospice economic model as it related to Evan’s situation.

This is one of the hardest blog posting that has ever been written. . . .ever. Sometime earlier this afternoon, the paperwork was signed entering Evan into the care of a local hospice organization. The papers were almost an inch thick stack of medico-legal mumbo jumbo, the gist – please die quickly, with the least amount of fuss, and we’ll be there to make it as painless as possible while maximizing the profit from your dying.

WARNING – WARNING – WARNING. Grief has been simplified as a five stage model that is neither regular, balanced, ordered nor sequential. Along the way the grieving person will experience: anger, depression, bargaining, acceptance, and denial. At the juncture of the writing of this post, the writer is experiencing ANGER at the DENIAL of compassionate service by hospice providers due to an economic DEPRESSION and a failed BARGAINING process on the behalf of those they purport to assist. And Evan is left to ACCEPT the realities of a red tape jungle that his parents seek to hack a path through to daylight. Clearly this is not the classic Kubler-Ross model, but when has this situation ever been classic?

But let’s push the rewind button and go back 4 weeks to the last set of scans. It was determined at editorial review that the full extent of the results of those scans would be revealed in a more deliberate manner as we all came to terms with the realities of what we saw in the images.

The images revealed not only a larger main tumor that was encroaching on Evan’s spinal cord but multiple metastatic tumors in multiple lymph nodes in and throughout his body and encircling his neck, additionally there were 30+ rapidly growing tumors in all fields of his lungs and no less than 5+ metastic tumors in his skeleton. In the 10 weeks since Evan had stopped taking the braking chemotherapy, the disease had gone into overdrive.

The images painted a picture of death. The choices were stark, brutal and devastating: Treat the disease to save spinal cord function and reduce pain vs. seeking out some other untried/untested guess; followed by - Should Evan die while suffocating from extensive tumor growth in his lungs vs. dying from starvation?

And all these decisions had to be made against a backdrop of clinical depression and despair on Evan’s part. Being the brightest light bulb in the box has not necessarily been to his advantage as he has reached two conclusions: He will live the remainder of his life in some degree of pain that has been his constant companion for the past 4+ years; and that he no longer had any confidence in any proposed treatment after so many failed attempts by the medical establishment. All he knew/knows is that his parents love him, and that he doesn’t want to hurt them, nor be seen as less than worthy of that love by quitting. He just wants to be a good boy and live a normal life.

So going back to the original line of this post, no we were not happy about entering hospice, nor do we know anyone who is happy about hospice; excepting those who have given up hope on life and seek the warm comfort of a dark enveloping end to their misery and pain. Please see Dr. Jack Kevorkian.

There is as hard, cold reality that is shied away from by all people, but especially those of us fortunate enough to have lived our lives entirely in the first world: Life ends in death. For all the religious and spiritual processes and rituals, not one of them can alter the ultimate physiological reality that our earthly lives are finite.

As Evan’s caregiver’s we needed to retool, reprioritize and rethink our roles, purposes and plans. We do not yet know the excruciation of parents surviving their child’s death, but the death of our dreams has been desperately painful. We had to shift into total support and service mode. A 13 year old young man is not just a child to be told what to do; they are a young adult with major psychological support needs before one throws the cold, wet blanket of impending death over their shoulders. Our call is to be there for him to meet every need he identifies.

Evan does not acknowledge the grave nature of his reality, but he knows. Evan does not talk about disease or dying, he often just doesn’t talk. Evan does not revel in his increasingly gaunt figure as he grows taller while continuing to lose weight, he shies away from seeing those who knew him before or wears disguising baggy clothes and sweats. His smile when it comes will still light up a room, but there is a painful response from that room as they look past the grinning teeth and see the hollowing cheeks and the taught cords of his neck.

And as people grasp the full nature of what is happening, the next inevitable question arises: How are you (the caregiver/parent) doing? Somewhere in recesses of your mind I would ask you to conjure up the elements of Greek mythology, specifically related to death if only because the imagery surrounding the transition between life and death is useful for relating the changing role of Evan’s parents from champions of the fight for his cure to becoming the most supportive and reliable people in his journey toward death.

A brief primer: Hades, a devilish God thrown out of Olympus by Zeus is doomed to rule the Underworld and its inhabitants, the dead. To reach the Underworld, the dead are transported across the river Styx (River of Hate) by a boatman, Charon (typical imagery presents this character as the Grim Reaper) who is to be paid 2 coins otherwise the dead were destined to walk the world in hate as ghosts never achieving any semblance of peace in the life to come.

The concept of Rest in Peace derives its origin from such mythology, and as a general rule humanity seeks to grant the dead the most decent passing from the land of the living to that of the dead as seen in our laws, customs and mores surrounding the sanctity of the dead human body. And so people, family, and friends will do all they can to ensure that the boatman is paid his two coins so that our loved ones are granted safe passage over the River Styx; what we are not prepared for, what we cannot imagine, what we most assuredly run from is having to take on the role of the boatman. But that is now our role.

As Evan’s parents we were helped in our transition to these roles with the capable caring and comforting words of wisdom of all the members of Evan’s treatment team at NIH. It was no wonder that Evan prefers to be treated there than anywhere else, even in death there was a continuing element of hope. And so we come full circle to the title of this post. DNR does not stand for Do Not Resuscitate as much as it stands for Death – No Regrets.

Cancer Survivors

The first Sunday in June has been declared National Cancer Survivor Day. For 25 years this day has been set as a celebration of life. Who declared it so? We don’t know. Why was it declared so? We don’t know. Does it really matter? H E double hockey sticks, yes.

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?