Thank you all - difficult times
I have been struggling this month...
Struggling with pain and discomfort and infirmity...
I have not been eating and sleep has been elusive...
My pain seems to come in cycles - and when it ramps up the vertigo and nausea gets worse...
I am on my way up to the worst part of the cycle and even though I know what's coming and have been through it before the prospect is unsettling
But as I sit here I am surrounded by cards and gifts from a dozen members here - including gift cards and checks and cash
Well wishes and prayers and people urging me to keep volunteering - in fact funding some of those efforts I have planned for the kids on the pediatric oncology ward
And while I have a hard time believing that I am worthy of such charitable attention - or that I make much of a difference in the grand scheme of things...
Knowing that I have you as friends and family and peers and colleagues - knowing that others have sacrificed something to help counteract many of the problems I face has been a bit of a wake up call to me
I have not eaten in 3 days and I am not drinking enough to stay hydrated - and I have been angry and withdrawn feel cut off
I do not want to spend Christmas in the hospital as a patient - I don't want to let down the kids - or betray the trust and coins you have entrusted me with
They want me to go to the hospital and get buffed up - to get some saline and glucose - and some sort of shot that might help with the back spasms - observe me for a few hours - possibly give something to help with the pain before letting me go home
I will be on the oncology ward Christmas Eve - I may stay overnight for Christmas morning (the nurses say they can put me in a bed for observation without admitting me - so I can stay up with the kids overnight)
The girls hit up several dollar stores and thrift shops and goodwill and ended up with a surprisingly large haul - including some stuff that was donated or deeply discounted
So I am going to eat some crackers and some toast and crack open a bottle of water and do my best to keep it down tonight - and to do a little more tomorrow
I have been depressed and down and angry and frustrated and spiteful and withdrawn - have been wallowing in my own sorrow especially as the holiday approaches
I owe a great debt to a great number of selfless friends - one that I cannot repay
But I will do my best to get back on my feet and into the ring - to at least stand on my own two feet with my hands up before the bell rings
I could not do this without you - and the love and affection and respect and trust I get from you may go along way towards clearing out some of the black cloud of depression that has been sapping my heart and soul
They suggested I go to the emergency room last night - but I just can't do that - I need to tough it out and turn it around
Because as crippled and wrecked and distraught I may be - no matter what tier the pain level rises to - despite the other side effects I have a mission to accomplish and I have people counting on me
I will do my best not to let any of you down - I will do my best to pay in forward
It's just been a rough week - but with your support and friendship things should get better
I can always fall apart after Christmas
So thank you all - I promise I will try and do my needful things
Mike
Struggling with pain and discomfort and infirmity...
I have not been eating and sleep has been elusive...
My pain seems to come in cycles - and when it ramps up the vertigo and nausea gets worse...
I am on my way up to the worst part of the cycle and even though I know what's coming and have been through it before the prospect is unsettling
But as I sit here I am surrounded by cards and gifts from a dozen members here - including gift cards and checks and cash
Well wishes and prayers and people urging me to keep volunteering - in fact funding some of those efforts I have planned for the kids on the pediatric oncology ward
And while I have a hard time believing that I am worthy of such charitable attention - or that I make much of a difference in the grand scheme of things...
Knowing that I have you as friends and family and peers and colleagues - knowing that others have sacrificed something to help counteract many of the problems I face has been a bit of a wake up call to me
I have not eaten in 3 days and I am not drinking enough to stay hydrated - and I have been angry and withdrawn feel cut off
I do not want to spend Christmas in the hospital as a patient - I don't want to let down the kids - or betray the trust and coins you have entrusted me with
They want me to go to the hospital and get buffed up - to get some saline and glucose - and some sort of shot that might help with the back spasms - observe me for a few hours - possibly give something to help with the pain before letting me go home
I will be on the oncology ward Christmas Eve - I may stay overnight for Christmas morning (the nurses say they can put me in a bed for observation without admitting me - so I can stay up with the kids overnight)
The girls hit up several dollar stores and thrift shops and goodwill and ended up with a surprisingly large haul - including some stuff that was donated or deeply discounted
So I am going to eat some crackers and some toast and crack open a bottle of water and do my best to keep it down tonight - and to do a little more tomorrow
I have been depressed and down and angry and frustrated and spiteful and withdrawn - have been wallowing in my own sorrow especially as the holiday approaches
I owe a great debt to a great number of selfless friends - one that I cannot repay
But I will do my best to get back on my feet and into the ring - to at least stand on my own two feet with my hands up before the bell rings
I could not do this without you - and the love and affection and respect and trust I get from you may go along way towards clearing out some of the black cloud of depression that has been sapping my heart and soul
They suggested I go to the emergency room last night - but I just can't do that - I need to tough it out and turn it around
Because as crippled and wrecked and distraught I may be - no matter what tier the pain level rises to - despite the other side effects I have a mission to accomplish and I have people counting on me
I will do my best not to let any of you down - I will do my best to pay in forward
It's just been a rough week - but with your support and friendship things should get better
I can always fall apart after Christmas
So thank you all - I promise I will try and do my needful things
Mike
0
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Mike you have given so much just from your post I image way more than you tell us . and are truly a inspiration to most of us
I would bet all the people "counting on you " if you ask would vote for you to take care of your self first ,
take a day or three let the doctors / hospital get you leveled up a bit [:D]
I think you found your calling in helping out the kids being there for them , however if you do not take care of your self you may not be there
so get in to the pit stop ( hospital ) and back in the race
just me and my two cent input /thoughts0 -
prayers 0 -
I am at the hospital getting buffed up - receiving some proactive treatment designed to stabilize things or take the edge off...
My primary care Doc and my insurance company nurse advocate and the girls ganged up on me - convinced that a 12 to 24 hour stay - coded as a non admission for observation and testing was the best option to stop the downwards spiral and prevent a longer stay over the holidays
I am not convinced it's a conspiracy - get me there and take some of the weight of things away - and then "well your here so why not stay the night so we can do a few more tests or monitor your progress"
They have hung saline and glucose and are also pushing magnesium and potassium and iron - 3 through the arm intravenously and one through the bard power port in my chest
Mild fever - elevated blood pressure - dehydrated...
They intend on giving me something for pain - and something for the back muscle spasms...
I have lost 16 lbs in two weeks and they are unhappy about that
They pushed some sort of high power anti nausea med and that seems to have helped quite a bit
They don't want me up and out of bed unless I need to use the bathroom
They are monitoring vitals every hour and have done two blood draws - 7 red caps and one yellow cap - after the meds have set in they will do additional blood works and labs
In about an hour they are going to hit me with a big dose of high level pain meds and give me some benadryl - I am expected to get some sleep
So I have dressed in warm heavy comfortable clothes - I have my sleep mask - I have my wireless Bose sound wave Bluetooth headphones on and my music playing
Doing breathing exercises and building an imaginary division in my head - putting together a to&e in my head - mental exercise techniques designed to let me go somewhere the pain does not rule
If this prevents or puts off a longer hospital internment than I can live with it - but I so do not want to be here
The intractable high level persistent neuropathy is pretty bad - and walking has been hit or miss.
I so don't want to be here.
Mike0 -
Wishing the best for you Mike.
I'm sorry you are having to deal with this.
I hope you feel better, in the near future.
I care about you Brother, as do many here.
-Ken-0 -
Hope the short stay in the hospital helps. As you know, hydration is extremely important and the rehydration may help with the other issues. My last round of chemo they would push some IV anti nausea meds which helped tremendously. Made Zofran and compazine look like rolaids. Trying to remember the names but it escapes me right now.
Hope you are able to get some rest
David0 -
It's almost comical in a sad way...
I recently got access to most of the medical file reports and notes covering the period I have been dealing with cancer...
It's all very professional but universally everybody indicates that I was a dead man walking - with less then a 1% chance of making it another month
There is a discussion about the radical course of radiation treatment and last resort heavy duty chemotherapy - and concerns about side effects from treatment - but he has no other option and won't live to start treatment let alone complete it
The truth is that they don't know why I am not dead - it's statistically impossible for me to be alive right now
I mean sure it's nice to not be dead - but they have no idea how to fix me or advance my recovery or to deal with some of the side effects
The vertigo and nausea can be helped with zofram and meclazine and scopalamine and other meds - but that only does so much and I quickly develop tolerances - and you can only increase the dosages so much without doing harm
I had a good Doc and nurse in the emergency room - they actually took time to review my file and speak briefly with my primary care Doc...
They were not messing around - they pushed enough pain meds that I was out cold for several hours
I know it's bad to go a few days without eating or drinking - sometimes it gets the better of me
I am going to try and get some sleep - I am just plain tired and worn out
Mike0 -
I am sorry.
I know that I could and should have done more for the kids on the pediatric oncology ward and I have let them down
I know that I could and should be more active and available here in providing expert knowledge and I have dissapointed you
I have been detached and withdrawn and sullen and angry and hostile have avoided contact with or help from my friends here
I need to do more despite any physical pain or mental trauma
When I allow the pain and nausea and vertigo get to me - when I cannot eat or drink or walk much I am not taking care of needful things
It's a rough patch right now - and the brain tumor investigation has my brain twisted up - I am not coping well and I am not sleeping
They wanted to keep me overnight but I refused - I just can't do a stay in the hospital over the holidays - I don't think I can face that
As stated above I have 15 cards and one letter on the mantle along with a cookie tin filled with gift cards and checks and cash
You have chosen to support me in my struggle - and also taken on the burden of helping me help the kids with cancer
You have offered the hand of friendship - treated me like family or a peer or colleague and sacrificed your own time and treasure
And I don't know that I deserve it or have earned it - or that I can live up to the expectations or image
I will try to do my best - to do needful things
I wish I could see in the mirror what some of you seem to see in me
Mike0
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