At a loss - just holding on tight...
So here I sit having met two important deadlines on the calender in the last two weeks or so...
I have reached the age of 47 and have extended my death sentence reprieve past the 2 year anniversary mark.
After seeing the radiation oncologist this morning I stopped in to visit with the kids on the pediatric oncology ward.
13 girls between the ages of 10 and 16 in attendance - a figure and status that changes seemingly every time I stop by.
There are 3 boys as well but they have changed things around somewhat to provide for a girls and boys dorm pods sharing a common area - which seems to make sense.
Coping mechanisms and the power of children to continue to thrive under horrible circumstances amazes me.
Peggy lost her battle and passed yesterday during a surgical procedure - and as I came in this morning they were performing a unique ritual - they all join together the following day to help clean the bed and wall locker / closet of someone who has departed...
Most often with family in attendance - and with the families permission they frequently will take and hold onto some small single possession of the person no longer there.
And while it tears me apart to watch - they seem to laugh and smile more than they cry - they swap stories amongst themselves and with the family and nurses - in silent bond and understanding that the ritual will be performed for them one day if needed - and that it will continue even after they have all moved on...
They have a cabinet and mirror area with shelves that they place pictures or keepsakes or stuffed animals or sections of ribbon - an ever changing memorial or alter of remembrance.
Powerful talismans.
They made me a lanyard key chain for my birthday - it's a multicolored tightly woven object - it's made up of pieces of patient ID bracelets from those whom have moved on / either home and into recovery or on a journey to a more special place were there is no cancer or pain.
They also had one talented girl do a sketch in black pencil of what I look like to them - how they see me (not in the wrecked shell I inhabit now)
Powerful talismans and sacred objects indeed.
The senior floor nurse tells me that what I do there is part of something greater then myself - that it must be part of the purpose of my survival to this point.
Sometimes it's very difficult for me to continue to visit and help out - sometimes I cannot sleep and other times I have nightmares.
I tell the nurses that I don't know how they do it - how they return each day with helping hand and open heart - and one new nurse slams me back on my mental heels - stating that I have been doing this longer than she has.
I suppose it's comforting to know that even if I am unable to return or visit when the time comes that others will step in and keep things going
I just wish I could do more or do better - a better person than me - because often the weight of things is hard to carry and seems to further damage or diminish what I have left inside
Ultimately they day will arrive were the cancer returns and my body fails - and I will not be here or be able to visit again
I simply am unable to fix or save or aid or shield anyone no matter how I feel or try
Just going to be a tough night I guess - but at least my keys have a new place to hang - on a talisman that seems to imbued with its own weight and portent that only I can see.
It's just hard sometimes - hard to maintain or be positive.
The scope and breadth of this is greater then my understanding or ability.
Putting my thoughts down here in a more structured and ordered format often helps me work through things eventually - someplace were I have friends and peers and fellow travellers on their own path like mine.
Don't know that it makes sense or will provide and clarity.
Going to lay down in the dark for awhile and think it through and hope for sleep.
Mike
I have reached the age of 47 and have extended my death sentence reprieve past the 2 year anniversary mark.
After seeing the radiation oncologist this morning I stopped in to visit with the kids on the pediatric oncology ward.
13 girls between the ages of 10 and 16 in attendance - a figure and status that changes seemingly every time I stop by.
There are 3 boys as well but they have changed things around somewhat to provide for a girls and boys dorm pods sharing a common area - which seems to make sense.
Coping mechanisms and the power of children to continue to thrive under horrible circumstances amazes me.
Peggy lost her battle and passed yesterday during a surgical procedure - and as I came in this morning they were performing a unique ritual - they all join together the following day to help clean the bed and wall locker / closet of someone who has departed...
Most often with family in attendance - and with the families permission they frequently will take and hold onto some small single possession of the person no longer there.
And while it tears me apart to watch - they seem to laugh and smile more than they cry - they swap stories amongst themselves and with the family and nurses - in silent bond and understanding that the ritual will be performed for them one day if needed - and that it will continue even after they have all moved on...
They have a cabinet and mirror area with shelves that they place pictures or keepsakes or stuffed animals or sections of ribbon - an ever changing memorial or alter of remembrance.
Powerful talismans.
They made me a lanyard key chain for my birthday - it's a multicolored tightly woven object - it's made up of pieces of patient ID bracelets from those whom have moved on / either home and into recovery or on a journey to a more special place were there is no cancer or pain.
They also had one talented girl do a sketch in black pencil of what I look like to them - how they see me (not in the wrecked shell I inhabit now)
Powerful talismans and sacred objects indeed.
The senior floor nurse tells me that what I do there is part of something greater then myself - that it must be part of the purpose of my survival to this point.
Sometimes it's very difficult for me to continue to visit and help out - sometimes I cannot sleep and other times I have nightmares.
I tell the nurses that I don't know how they do it - how they return each day with helping hand and open heart - and one new nurse slams me back on my mental heels - stating that I have been doing this longer than she has.
I suppose it's comforting to know that even if I am unable to return or visit when the time comes that others will step in and keep things going
I just wish I could do more or do better - a better person than me - because often the weight of things is hard to carry and seems to further damage or diminish what I have left inside
Ultimately they day will arrive were the cancer returns and my body fails - and I will not be here or be able to visit again
I simply am unable to fix or save or aid or shield anyone no matter how I feel or try
Just going to be a tough night I guess - but at least my keys have a new place to hang - on a talisman that seems to imbued with its own weight and portent that only I can see.
It's just hard sometimes - hard to maintain or be positive.
The scope and breadth of this is greater then my understanding or ability.
Putting my thoughts down here in a more structured and ordered format often helps me work through things eventually - someplace were I have friends and peers and fellow travellers on their own path like mine.
Don't know that it makes sense or will provide and clarity.
Going to lay down in the dark for awhile and think it through and hope for sleep.
Mike
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you are truly a special man . as you have stated maybe some grand plan for you that has allowed you more time although the suffering I can not image what you have endured .
spending time with the kids ( and other cancer fighters ) giving them a little joy and hope may just be part of the grand plan of things in life you have been granted
if not at least you have made it so
rest well0 -
The story the other day of Pres. Bush visiting a children's home and seeing a little girl like his child that had died and him crying really puts it in perspective of how one cares. Visiting a Shriner's home for Children or a St. Jude hospital will make one very humble very quick. 0 -
Morning Mike!
It?s good that I can say that and even better that you?ll read it.
I admire your ability to put thoughts in to words and bravery to do so. Even more so your ability to make it through another year a day or week at a time and the work you do with the kids there.
You were lucky to have been born when you were, that the diagnosis and treatments and knowledge is as advanced as it is today. But what the specialists learn from you and the kids will really improve things for the next folks to come down your path. The next generation will be better educated and equipped, have better techniques and treatments thanks to people like you and the kids you visit. So you guys have many parallels with folks in harms way in our armed forces - you?re out there, fighting something evil day after day, in hopes that it will truly make a difference for others today and in the future.
Keep up the fight Mike, a lot of the folks you know and many that aren?t here yet need you to!0 -
Each light of morning that you manage to not only survive but touch another life is a blessing enjoy them. I sincerely hope you have the ability to continue helping others understand the fight and the value of life.
Godspeed0 -
quote:Originally posted by Ditch-Runner
you are truly a special man . as you have stated maybe some grand plan for you that has allowed you more time although the suffering I can not image what you have endured .
spending time with the kids ( and other cancer fighters ) giving them a little joy and hope may just be part of the grand plan of things in life you have been granted
if not at least you have made it so
rest well
Said better than I could have.
I've said it before, and I will say it again now.
You Humble Me, and make me strive to become a better Man Mike. You remain in my thoughts and prayers.
Your friend,
-Ken-0 -
Thank you for sharing . You have made my day better. Thank you. 0 -
quote:Originally posted by Barzillia
Why ?
WTH, does that mean/imply?
Seriously.0 -
And yet the question remains. 0 -
I know your posts often make me cry but I read them anyway. I don't think I could do what you do but I really, truly admire you for doing this for these poor children. 0 -
quote:Originally posted by Barzillia
It surely does.
Which is why it was asked.
Why what? What are you questioning? It is the bracelet, the children, the mans feelings or your love Hillary?0 -
It's okay guys - he seems genuinely concerned over the status of my immortal soul - my status as a lapsed Roman Catholic (Apostolic) and my no longer speaking with / anger issues with God...
It's a long running narrative and while the greater discussion may appear at times contentious he has been quite ardent in his support during my fight against cancer
My dystopian existence and existential angst - my stated position that God's garden is full of weeds - my references to a groundhogs day meets Dante's inferno / book of Job frame of reference is fair game and open for debate and has produced some truly epic thread content
When I wax philosophic and tilt at windmills and rage against the machine - when I have grasped the conch shell and taken my turn to speak the resultant dialogue is often unpleasant and difficult
My struggle with my inability to effect any concrete positive change in the suffering of others - my disappointment and dissatisfaction with receiving a participation trophy instead of real world discernible results and failure to be able to achieve a victory or win despite any effort or desire or action is hard to deal with
Being the little engine that couldn't
Mike0 -
quote:Originally posted by mrmike08075
It's okay guys - he seems genuinely concerned over the status of my immortal soul - my status as a lapsed Roman Catholic (Apostolic) and my no longer speaking with / anger issues with God...
It's a long running narrative and while the greater discussion may appear at times contentious he has been quite ardent in his support during my fight against cancer
My dystopian existence and existential angst - my stated position that God's garden is full of weeds - my references to a groundhogs day meets Dante's inferno / book of Job frame of reference is fair game and open for debate and has produced some truly epic thread content
When I wax philosophic and tilt at windmills and rage against the machine - when I have grasped the conch shell and taken my turn to speak the resultant dialogue is often unpleasant and difficult
My struggle with my inability to effect any concrete positive change in the suffering of others - my disappointment and dissatisfaction with receiving a participation trophy instead of real world discernible results and failure to be able to achieve a victory or win despite any effort or desire or action is hard to deal with
Being the little engine that couldn't
Mike
I have found this to be true (in red above) as well, Mike. Though many here question his methods, I believe Barzillia's intentions are not only honest, but sincere.
I parted ways with the belief in any god many years ago for reasons external to myself. There are many beautiful godly people in my life that are pained by my lack of spiritual belief, but one must be true to himself first. If that includes a relationship with a god, I see that as a positive in most people.
While I cannot directly relate to your decision, I respect it. I also respect the input from anyone who has a sincere desire to help.
As always, I wish you the best and please know you are in my heart and frequently in my thoughts.
Don0 -
prayers 0 -
Anger and fear and shame and hate and regret...
I find that I carry to much of each - and once picked up and examined can not be put back down - once earned cannot be denied - once accrued can not be sloughed off - sometimes escape appears impossible
I allowed them to gain freedom from my tight grasp again this weekend - and decided to go off the meds again - to wipe the obscuring cloudy condensation off the mirror and see what stared back
I always hope to find some semblance of my former self or some far glimpse of a road to recovery - a path were I can devote more effort towards shielding others from pain or suffering - a place were my voice can once again be a clarion call and speak for those who cannot
But after days of increasing revelations of intractable pain - were eating and drinking and sleeping become increasingly difficult and the ability to walk escapes me again...
After that and many other revelations I am afraid that my resolve has broken once more - as each time I attempt this I only end up in an ambulance or the emergency room at a greater deficit - like I dug my own hole and now it's so deep and I am so exhausted I can no longer climb back out
After being unable to stand I have managed to get off the floor and back on the couch - and took some pain meds - I am going to close my eyes for awhile until the room stops spinning and the back spasms relent and the nausea abates
Mike0 -
Always appreciate your thoughts and words Mike. You continue to inspire me. Thanks.[:)] 0 -
I hope you are comfortable and with friends, that is my last wish. 0 -
Good thoughts/Prayers coming your way Brother.
You've been in my thoughts and Prayers for quote a while now Brother.
Love you Mike.
-Ken-0
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