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Cancer treatment update: end of the year edition
mrmike08075
Member Posts: 10,998 ✭✭✭
Cancer treatment update: end of the year edition
Platinum based oxaliplatin foxtrot protocol chemotherapy infusion regimen of treatment is ongoing (7 more months to go)
Went to the hospital today for a single dosage - 1 big bag of high test chemo infusion through my Bard Power Port (sub-q implant in my chest near the right side of the breastbone - under skin / over muscle)
Also had bags hung of glucose and saline and antinausea meds and an immune boost cocktail
And 2 intermuscular shots in the left bicep - vitamin d and something designed to promote white cell development (no I still don't understand why these can't go through my port - the muscle shots hurt quite a bit - feels like you been hit with a 2X4 in the arm)
Currently I am both wired and amped up and fatigued and exhausted all at the same time - odd I know...
They added 5 new girls into "my group" of ladies on the pediatric oncology ward (11 & 12 & 2 15 year old twins & a 16 year old) all with leukemia and lymphoma and osteocarcenoma
That makes for a total of 12 girls in the tween / teen dorm environment
I spent an hour with the group and there nurse advocate teaching some tricks and answering questions and showing them what to keep in their Cancer go bag
This being close to new years and a Friday there were 9 parents in attendance for the "class" (8 mothers and one father)
The father insists on shaking my hand and locking eyes with me to say thank you every time I see him (his daughter lost both legs above the knee to osteocarcenoma related to leukemia)
Haily got fitted for prosthetics today - a process akin to fitting someone for a fancy shotgun - she got to try out a set of physical rehab legs (not realy fitted or a final version but comfortable and robust if cluncky)
It's seems a real fast transition post leg removal surgery but Makaila says you need to do it as quick as possible - before muscles atrophy and your sense of balance and athleticism degrades - plus the psychological factor works better if forward progress is made - better to struggle and fight and move forward than stay depressed or lose physique and tone.
As promised I did briefly dance with her - everyone cried including me
Only for a few minutes usage total and under supervision but it seems to mean a lot to Hailey - more than I guess I have to words to express whining me - I still feel it in my chest and heart now.
The girls took "vine" video??? Of it and sent it to Makailas phone
The docs and nurses were a bit concerned about my not sleeping well and my not staying properly hydrated like I should...
I did have some pretty violent and dehibilitating nausea and power vomiting way past empty during my infusion session today
But for the most part the nausea and vomiting have been more controlled and less frequent and less severe thanks to the new meds and the higher dosages
I sat in on and led group today - they have been asking me to do so for awhile - and it means presenting some bullet points to the mental health specialist / lead and spending a few minutes uses with her after group to go over notes and discuss individuals progress.
I still am unsure about this and about volunteering in general.
I know it's needful and good for everyone involved including me.
I just still have trouble believing that I know enough or care enough or am effective enough to actually help these people
After all I am a bit of a mess myself and have trouble sometimes with feeling depressed and isolated and marginalized and cut off and with my self identity in others eyes being the sick one - the one with Cancer who may die who has pain who is not normal
I try to take what I have learned here - what you have taught me - what you give as feedback and turn it all into something useful and helpful and needful where and when I am able
They (the senior nurses and specialists and docs) seem to see me as a veteran now and as a helpful and wise traveler but I don't feel that way much of the time.
Makaila says it's who I am and what I was ment to do right now - that I can't just survive and exist - she says I must thrive and contribute and help in order to balance out my dark days
Having people rely on you and look to you for help and answers can be both exhilarating and a heavy burden at the same time.
I don't know if I am making sense of it all or expressing it - verbalizing it well enough for you
I itch all over - my lower legs dont work - my hand and finger cramps are pretty bad - transient blue and yellow color blindness today - not what I would call blurry vision but the change of visual focus from near to far is not seamless or easy today...
Stellar nose bleed during my visitation on the "elderly - senior" oncology ward - were the old folks took care of me for ten minutes or so
All of my toenails look black and like my feet have been crushed
None have fallen off and they don't hurt - but it looks bad
Need to try to med up and sleep tonight - I am cooking for 5 girls on Saturday night after all
Sometimes the mind is a wonderful construct - my imagination and my spark keep me going when it's dark and cloudy
Other times my mind is its own worst enemy - as a smart and educated man I know the odds and I know own what's coming and my mind becomes a trap for bad thoughts and negative energy
Bought some more knives I don't need.
How are all of you???
Many of you have finished this journey I am on or can at least see the finish line if not yet across it...
Your victories and advice protect me - I gird on your lore like overlapping plates of armor and coiled chain mail.
Mike
Platinum based oxaliplatin foxtrot protocol chemotherapy infusion regimen of treatment is ongoing (7 more months to go)
Went to the hospital today for a single dosage - 1 big bag of high test chemo infusion through my Bard Power Port (sub-q implant in my chest near the right side of the breastbone - under skin / over muscle)
Also had bags hung of glucose and saline and antinausea meds and an immune boost cocktail
And 2 intermuscular shots in the left bicep - vitamin d and something designed to promote white cell development (no I still don't understand why these can't go through my port - the muscle shots hurt quite a bit - feels like you been hit with a 2X4 in the arm)
Currently I am both wired and amped up and fatigued and exhausted all at the same time - odd I know...
They added 5 new girls into "my group" of ladies on the pediatric oncology ward (11 & 12 & 2 15 year old twins & a 16 year old) all with leukemia and lymphoma and osteocarcenoma
That makes for a total of 12 girls in the tween / teen dorm environment
I spent an hour with the group and there nurse advocate teaching some tricks and answering questions and showing them what to keep in their Cancer go bag
This being close to new years and a Friday there were 9 parents in attendance for the "class" (8 mothers and one father)
The father insists on shaking my hand and locking eyes with me to say thank you every time I see him (his daughter lost both legs above the knee to osteocarcenoma related to leukemia)
Haily got fitted for prosthetics today - a process akin to fitting someone for a fancy shotgun - she got to try out a set of physical rehab legs (not realy fitted or a final version but comfortable and robust if cluncky)
It's seems a real fast transition post leg removal surgery but Makaila says you need to do it as quick as possible - before muscles atrophy and your sense of balance and athleticism degrades - plus the psychological factor works better if forward progress is made - better to struggle and fight and move forward than stay depressed or lose physique and tone.
As promised I did briefly dance with her - everyone cried including me
Only for a few minutes usage total and under supervision but it seems to mean a lot to Hailey - more than I guess I have to words to express whining me - I still feel it in my chest and heart now.
The girls took "vine" video??? Of it and sent it to Makailas phone
The docs and nurses were a bit concerned about my not sleeping well and my not staying properly hydrated like I should...
I did have some pretty violent and dehibilitating nausea and power vomiting way past empty during my infusion session today
But for the most part the nausea and vomiting have been more controlled and less frequent and less severe thanks to the new meds and the higher dosages
I sat in on and led group today - they have been asking me to do so for awhile - and it means presenting some bullet points to the mental health specialist / lead and spending a few minutes uses with her after group to go over notes and discuss individuals progress.
I still am unsure about this and about volunteering in general.
I know it's needful and good for everyone involved including me.
I just still have trouble believing that I know enough or care enough or am effective enough to actually help these people
After all I am a bit of a mess myself and have trouble sometimes with feeling depressed and isolated and marginalized and cut off and with my self identity in others eyes being the sick one - the one with Cancer who may die who has pain who is not normal
I try to take what I have learned here - what you have taught me - what you give as feedback and turn it all into something useful and helpful and needful where and when I am able
They (the senior nurses and specialists and docs) seem to see me as a veteran now and as a helpful and wise traveler but I don't feel that way much of the time.
Makaila says it's who I am and what I was ment to do right now - that I can't just survive and exist - she says I must thrive and contribute and help in order to balance out my dark days
Having people rely on you and look to you for help and answers can be both exhilarating and a heavy burden at the same time.
I don't know if I am making sense of it all or expressing it - verbalizing it well enough for you
I itch all over - my lower legs dont work - my hand and finger cramps are pretty bad - transient blue and yellow color blindness today - not what I would call blurry vision but the change of visual focus from near to far is not seamless or easy today...
Stellar nose bleed during my visitation on the "elderly - senior" oncology ward - were the old folks took care of me for ten minutes or so
All of my toenails look black and like my feet have been crushed
None have fallen off and they don't hurt - but it looks bad
Need to try to med up and sleep tonight - I am cooking for 5 girls on Saturday night after all
Sometimes the mind is a wonderful construct - my imagination and my spark keep me going when it's dark and cloudy
Other times my mind is its own worst enemy - as a smart and educated man I know the odds and I know own what's coming and my mind becomes a trap for bad thoughts and negative energy
Bought some more knives I don't need.
How are all of you???
Many of you have finished this journey I am on or can at least see the finish line if not yet across it...
Your victories and advice protect me - I gird on your lore like overlapping plates of armor and coiled chain mail.
Mike
Comments
Here's wishing you a much better 2017.
Knives you don't need? If it's about need, all you need is a 1 room shack and a wood stove.
Best of luck, Pal.
All we can hope for is not a lot of really bad days in a row. Sadly i know about projectile vomiting and not drinking enough fluid.
I had to take all my fluid through a feeding tube and it is hard to drink fluid when you know you are going to be sick.
My wife would hook me up to a machine to feed me while i was sleeping to make me drink fluids.[:(]
I hope you can keep helping the kids all help they can get is needed. I lost a cousin to cancer when she was 5 and i was 6.
Prayers for a great 2017.
You and nord are my inspiration not only based on surviving but on how you have conducted yourselves as men.
I hope to do as much and to be as strong as both of you.
Thanks all.
I try - I have tried - I will try to keep up the good fight.
I am on Ritz crackers number 7 out of 14
I am half way through a 12 ounce orange fanta
I have an 8 ounce bottle of Fiji water ready next
Been working on them for an hour now...
Mike
I wish You The Very Best in the New Year.
Mrmike, I have been following for a while now. Everytime, I want to say something helpful. Something inspirational. But You are, simply put, beyond my understanding. I pray for You. You inspire me. Your Strength of Spirit is so beyond anything I have ever encountered. You are a Great Man. Thank You for Sharing Your burden. Would that I could lighten Your load in some way. I cannot say more.
I wish You The Very Best in the New Year.
Well said, Handload. When I try to find words to express things like this it all sounds like gibberish. You have hit the nail on the head.
Hang tough, Mike. Better times are comin'!
quote:Originally posted by HandLoad
Mrmike, I have been following for a while now. Everytime, I want to say something helpful. Something inspirational. But You are, simply put, beyond my understanding. I pray for You. You inspire me. Your Strength of Spirit is so beyond anything I have ever encountered. You are a Great Man. Thank You for Sharing Your burden. Would that I could lighten Your load in some way. I cannot say more.
I wish You The Very Best in the New Year.
Well said, Handload. When I try to find words to express things like this it all sounds like gibberish. You have hit the nail on the head.
Hang tough, Mike. Better times are comin'!
Ditto for me as well Mike.
Every time I feel like I can or should say something to one of your posts, I comes out (to me anyway.) as less than what I intended.
Suffice it to say, that you are indeed in my thoughts and prayers Mike. As others have stated, you are an inspiration, for the way you are giving back, and all you do. I'm sure you mean a lot, to all whose lives you touch. Good for you Sir.
Wishing you and yours, a better year in 2017.
-Ken-
Mrmike, I have been following for a while now. Everytime, I want to say something helpful. Something inspirational. But You are, simply put, beyond my understanding. I pray for You. You inspire me. Your Strength of Spirit is so beyond anything I have ever encountered. You are a Great Man. Thank You for Sharing Your burden. Would that I could lighten Your load in some way. I cannot say more.
I wish You The Very Best in the New Year.
DITTO!
If I'd have been asked six months ago whether I'd see 2017, I'd have said probably not. And in saying not I now realize I really had no idea of what a wreck I was. A part of me knew I was very sick yet another part denied the obvious. It was as surreal then as it is now. How can anyone look into the mirror, see the wreck staring back, and somehow deny impending death? Funny, but I think we all do.
Then the little talk with my urologist. He saw the wreck, he saw the tumors and the blocked bladder, he saw the tubes punched into failed kidneys, and he saw what the first round of chemo did to me. He advised that I get my things in order as soon as possible, and rightly so. I was a dead man walking. Barely walking. Either the chemo or the cancer was going to kill me and he knew it.
I shared with you that I came home and asked a prayer which was immediately and clearly answered. What should I do? One word... "LIVE!" Mike, I have to wonder if you didn't ask the same thing because I think your prayer was also answered, just maybe not in the same way.
No guarantees were offered, no promises of a cure came from on high, no absolution from agony, and nothing to indicate relief from the horrific road ahead, just the command to LIVE. What a profound word and what a profound answer to a prayer. It changed my life and has made me better and stronger.
I read your posts and feel your weakness and pain. How can it be possible to gain strength from this experience, yet you have. How can it be possible to know that one's chances of life are so slim yet keep placing one foot in front of the other? How can it be possible in being so sick that one somehow reaches out to others and finds strength to give? Tell me that you haven't been given the command to LIVE.
Makaila is so correct. More correct than she could ever know. You are doing what you were meant to do. By all accounts you should be dead, yet you live and share strength you shouldn't have. This strength comes from somewhere. I look at myself and find no logical reason for what I've found inside me. There's absolutely no way I could have walked this path alone. Even my initial arrival at the Emergency Room was a miracle as to this day I'd rather face a firing squad than face a doctor, yet I went and am here to share. It shouldn't be, yet it is.
I am today in what appears to be remission. No drugs or pain killers. No oncologist for three months. My kidneys have come back against all odds, tubes have been removed from my back, and my urinary system is working. My urologist just shakes his head and smiles. He mentioned something about attitude making a difference. Maybe, but I think there's more.
For the life of me I can't see why my attitude should be any different than anyone else. A terminal prognosis is just that. The only thing I can think of is that some of us begin to die as soon as those horrible words are spoken and others are too dumb not to plod on. Perhaps the only saving grace is that we have no idea of the hell in front of us. For myself I firmly believe I've been carried when I couldn't walk as I'm well aware of my weaknesses and limitations. I didn't walk the road by myself and probably I'll face more tests.
Mike, my thoughts and prayers are with you constantly. Keep on sharing the strength you shouldn't have. Defy the odds if by no more than being stubborn. Somehow your weakness will make you stronger if there's any logic to it at all. I believe you're going to make it.
LIVE!
When you've tired of farting around in New Jersey, try a shooting trip to new Mexico!
I'll drag you, Makaila, the critters, nieces, hangers on, groupies; even whichever kids from the ward you wanna bring, out to Whittington Center, where we can blast away with everything from .17 to .480 for as long as y'all want!
After that, our herd can cruise the 15 PRIME shooting spots statewide to visit the Capitan High Power range for some military arms, the Albuquerque Shooting Range Park for some trap & Sporting Clays, the SASS HQ in Edgewood for some good smoke, the Del Norte Gun Club for a bit of silhouette & F-class, the Sandia Labs exotics range (I could describe it, but then I'd have to kill everyone who reads this), and "other" points of interest.
If, in some small way, I can help keep the grumblys at bay, create that shining ray, extend good feelings one more day, warm the hearts of folks and say,"I want to hear from you next Christmas Day"; I have done my part, OK?
Mike,
If I'd have been asked six months ago whether I'd see 2017, I'd have said probably not. And in saying not I now realize I really had no idea of what a wreck I was. A part of me knew I was very sick yet another part denied the obvious. It was as surreal then as it is now. How can anyone look into the mirror, see the wreck staring back, and somehow deny impending death? Funny, but I think we all do.
Then the little talk with my urologist. He saw the wreck, he saw the tumors and the blocked bladder, he saw the tubes punched into failed kidneys, and he saw what the first round of chemo did to me. He advised that I get my things in order as soon as possible, and rightly so. I was a dead man walking. Barely walking. Either the chemo or the cancer was going to kill me and he knew it.
I shared with you that I came home and asked a prayer which was immediately and clearly answered. What should I do? One word... "LIVE!" Mike, I have to wonder if you didn't ask the same thing because I think your prayer was also answered, just maybe not in the same way.
No guarantees were offered, no promises of a cure came from on high, no absolution from agony, and nothing to indicate relief from the horrific road ahead, just the command to LIVE. What a profound word and what a profound answer to a prayer. It changed my life and has made me better and stronger.
I read your posts and feel your weakness and pain. How can it be possible to gain strength from this experience, yet you have. How can it be possible to know that one's chances of life are so slim yet keep placing one foot in front of the other? How can it be possible in being so sick that one somehow reaches out to others and finds strength to give? Tell me that you haven't been given the command to LIVE.
Makaila is so correct. More correct than she could ever know. You are doing what you were meant to do. By all accounts you should be dead, yet you live and share strength you shouldn't have. This strength comes from somewhere. I look at myself and find no logical reason for what I've found inside me. There's absolutely no way I could have walked this path alone. Even my initial arrival at the Emergency Room was a miracle as to this day I'd rather face a firing squad than face a doctor, yet I went and am here to share. It shouldn't be, yet it is.
I am today in what appears to be remission. No drugs or pain killers. No oncologist for three months. My kidneys have come back against all odds, tubes have been removed from my back, and my urinary system is working. My urologist just shakes his head and smiles. He mentioned something about attitude making a difference. Maybe, but I think there's more.
For the life of me I can't see why my attitude should be any different than anyone else. A terminal prognosis is just that. The only thing I can think of is that some of us begin to die as soon as those horrible words are spoken and others are too dumb not to plod on. Perhaps the only saving grace is that we have no idea of the hell in front of us. For myself I firmly believe I've been carried when I couldn't walk as I'm well aware of my weaknesses and limitations. I didn't walk the road by myself and probably I'll face more tests.
Mike, my thoughts and prayers are with you constantly. Keep on sharing the strength you shouldn't have. Defy the odds if by no more than being stubborn. Somehow your weakness will make you stronger if there's any logic to it at all. I believe you're going to make it.
LIVE!
Nord, I gotta tell you Brother, you are also an Inspiration.
I've not stated this before, but you are also in my daily thoughts and Prayers.
I'm very glad, you seem to be kicking Cancers *.
-Ken-
I wish you all the best in the coming new year.
I sometimes feel disassociated and disconnected and disconsolate... at times not quite anchored and stable...
Restless and tired and manic and fatigued and out of sorts often...
Sometimes the pain and fatigue and nausea are just to much.
Sometimes coping and maintaining and limping along get hard...
I took Makaila out for brunch and threw up in a takeout bag waiting for the check - spent 10 minutes in their bathroom and 10 minutes in the parking lot and 10 minutes pulled over on the side of the road being violently ill - horrible stomack muscle spasms and back spasms with a raging double bbl nose bleed and blue / yellow color blindness and a ice cold roughshod nailsthrough the eyeballs tension headache...
She kept it together and tended to me and kept me upright and got me home were she promptly collapsed into tears and shakes and sobbing.
I just sat with her and held her and quietly talked / whispered to her and stroked her hair till she calmed down.
She gets upset and angry watching my inevitable and painful decline - my diminish ment in capacity and apablty scare her...
It's worse cause she knows better then me and better than most what I am going through And what's going on inside my head.
And cannot really help me or fix me or ease my pain at all.
She made a mistake today and angrily verbalized that she doesn't want to lose another husband (we are not married - I have proposed twice) like she lost the 1st one.
This whole thing may be as bad for her as it is for me - might even be more psychologically damaging.
And I can do nothing - I am helpless to console her - I am impotent and useless and broken and marginalized and less than a man.
It's tough sometimes - it's soul crushing sometimes - I feel like Job.
No steps back - no retreat - no reversals - no ground given - not ever - I will not yield - I will not give up - I will fight till the last.
I fight for her now - maybe always have.
She is my katniss everdean and my Anne of green gables and my sugar magnolia / blossoms blooming.
Her life has been filled with tragedy and pain and I don't want to be the next chapter in a dark novel.
I have love to give her - with love left over for all of you.
I just need more time. All I want is more time. As much as i can get.
Mike