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chemotherapy treatment side effects thoughts...

mrmike08075mrmike08075 Member Posts: 10,861 ✭✭✭
edited April 2017 in General Discussion
One of the long laundry list of ever changing (in appearance and severity level) side effects is the muscle seizures....

Certain muscle groups will fail to function correctly at random...

Some like the hands and fingers are to be regularly expected and can range from a light tingling and cramping - moderate interuption of function to severe painful paralysis and random powerful muscular seizures that cause near total loss of function...

I have learned to deal with these even though they irritate me greatly and are cause for public embarrassmentm...

There have been similar events in my shoulders and neck muscles...

Once the muscles surrounding the orbital eye sockets cramped and froze which was disconcerting and somewhat unanticipated...

Once I sneezed several times and the surface muscles in my cheeks and around the nose froze up - seized..

This week things got frightening...

I was on my knees toilet side vomiting...

Had been at it for awhile - abdominal muscles shot - nothing left to deposit in the bowl - dry heaving...

I got a towel to wipe the sweat off my face - raised my torso straight backed - still on my knees...

At this point the muscles in my throat froze.

They froze solid - locked up hard - pain hit like a lightening bolt...

Could not draw a breath in or out...

Could not speak...

It all froze - locked up - seized violantly...

All I could do was emit I whiny wheezing noise...

Fully aware of what was happening - in a panic I tried to turn towards the door and stand...

Lightheaded and scared and not getting any air I face planted...

Tried to inch - claw my way out of the bathroom but made no progress...

Things started going spotty - field of vision narrowed...

Chest hurt - heart rate on hummingbird...

Things began to seem far away - sound altered - like hearing through a tube...

I had the thought that this was it - this is how it ends - dead alone on the bathroom floor unable to see my loved ones again - so much unsaid...

Then - slowly and with much pain breath came...

Muscles unlocked...

Sight and hearing came back...

After drawing several breaths I tried to get up - failing at some point and passing out...

That's how Makaila found me 2 hours later when she got home from work.

I have not come to terms with this - it unsettled me and haunts my dreams...

Mike

Comments

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    Ditch-RunnerDitch-Runner Member Posts: 24,835 ✭✭✭✭
    edited November -1
    Mike I do hope and pray it gets better for you
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    cnsaycnsay Member Posts: 1,373 ✭✭✭✭✭
    edited November -1
    Prayers for you Mike. Hope things turn the corner and start getting easier.
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    84Bravo184Bravo1 Member Posts: 10,461 ✭✭
    edited November -1
    I'm sorry to hear of your struggles Brother, but I appreciate hearing how you are doing.

    Tough to read and digest, let alone what it must be like to be living it.

    We care for you Mike.

    Thoughts and Prayers go out to You, and Makaila from TN.

    I hope things get better for you soon Mike.

    -Ken-
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    bigoutsidebigoutside Member Posts: 19,443
    edited November -1
    Mike.
    Leave nothing unsaid.
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    nordnord Member Posts: 6,106
    edited November -1
    Mike,

    First and most important, my thoughts and prayers are with you. Your saga constantly haunts me and reminds me how easy my own journey has been. It also reminds me of my darkest days.

    I believe it not too much of a stretch to say that many of us, though not having suffered to the depth you've endured, have shared and empathize with your experiences. I don't know how many times it seemed that I was somehow out of my body and just observing, but still feeling everything that was happening. It's a sobering experience.

    You describe the agony of muscle groups seemingly going off the ranch. Your mention of hands not working struck a chord. This may have been the most difficult thing for me. I'd watch my hands shake uncontrollably. It took both hands to lift a cup to my mouth if I could even hit my mouth. I couldn't so much as sign my own name as my hands just didn't work. This is when I think I began to actually accept how seriously sick I was.

    Eventually as I began to recover I could use my hands as a gauge of my progress. I'd place my hands out in front of me and try to hold them steady. Little by little I'd note improvement but it was a slow and agonizing trip.

    Your journeys to the bathroom floor? I doubt than anyone here who has been so seriously ill hasn't made that trip. Thankfully I've only done it once and once was enough. It's a bad trip. I can't imagine having to go through it time after time.

    Mike, your strength and determination astound me. How you find the strength to keep plodding ahead is beyond my conception. Many here tell you to keep on keeping on. I won't and I can't. Only you can decide whether you'll be able to face yet another day. All I can offer is my empathy and my support of any decision you make. I have only a limited understanding of what you endure but I pray for your recovery.

    LIVE!
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    dav1965dav1965 Member Posts: 26,540 ✭✭✭
    edited November -1
    Mike i will tell you what the nurses told my wife. I was in the hospital with cancer and my trach was getting stopped up with a cold and i could not breath.

    My wife rang the bell and they came over the intercom and told my wife that everything was ok. She told my wife that if it gets clogged up i would pass out and when i passed out i would not breathe for a second and it wold fall off the trac and i would start breathing again.

    My wife chewed some * that night.

    Mike all i can tell you is that things WILL get better. The new normal might change some but you will get better.
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    mrmike08075mrmike08075 Member Posts: 10,861 ✭✭✭
    edited November -1
    I have to deal with mentally the prospect of this being a terminal illness that may ultimately kill me...

    I have had to face my mortality and it's not been easy...

    Coping and maintaining and trying to remain positive amidst the minefield of treatments and the dantes Inferno tapestry of the cancer treatment environment has been an adjustment...

    But this was different - I really thought I was at the point of death - that the end time had arrived.

    Maybe I am just not as strong as I thought because this one had me realy scared - and I am having some difficulty dealing with it - I have not yet laughed or shrugged it off.

    Came out of nowhere - struck like a cobra - could have been the end.

    Maybe in addition to losing my physical strength I have also lost some of the heart and drive that have been keeping me going.

    Mike
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    Dads3040Dads3040 Member Posts: 13,552 ✭✭✭
    edited November -1
    Mike, I don't have the words. But I do know that you have the strength and the heart. You have shown us here over and over the depths of your will and determination.

    It seems a small thing, but it is all we can do for you: Pray.
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    gunnut505gunnut505 Member Posts: 10,290
    edited November -1
    Mike, other than the barfing, and pain, and unanticipated random muscle constrictions, and the miasma of chemical compounds coursing through your system, and the dehumanizing outta nowhere corporeal assaults, and the uncertainty & self-deprecation that so much time alone has given you; NOW you question your strength and conviction?!?

    Wish I had 1/1,000th of what you've demonstrated over the past many months.
    You must have been a Sequoia in a former life.
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    AzAfshinAzAfshin Member Posts: 2,985 ✭✭
    edited November -1
    Sorry to hear about the difficulties you are having, but as I was reading about your experience, a thought came to my head. Have you thought about getting a seizure dog? Sometimes they are covered by insurance and they are trained to detect before a seizure hits so you can get to a safe position and they also try to hold you down so you don't fall and hurt yourself. It's amazing how much they can help.

    Just a thought.
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    woodshed87woodshed87 Member Posts: 23,478 ✭✭✭
    edited November -1
    Damn and we set here and whine about our kidney stones & headaches and such,, Shame on Us[:(].....Lord Please help Mike endure and beat this Disease,,,, Amen
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    mrmike08075mrmike08075 Member Posts: 10,861 ✭✭✭
    edited November -1
    It's just gotten so hard...

    This foxtrot protocol chemotherapy infusion regimen and targeted radiation therapy course are brutal...

    It's the " this guy is most likely dead anyway - so let's try this option of last resort"...

    I knew that going in - I was well informed - I was well advised - I did my research...

    But your not prepared - you don't know - you cannot imaging what's coming...

    I try to be stoic - I try to be strong - I try to set an example for others - I try to play my part in the treatment plan...

    At this point while I am scared of dying - I don't want to die - I have not given up...

    These treatments at this point terrify me.

    I have accessed and used up resources I did not know I had...

    I try so hard - it's more difficult each cycle by an order of magnitude...

    I wish I had more to give. More to commit to my own battle and more to give to the children...

    I often feel that I have failed despite my efforts...

    I often feel that I have let people down...

    I wish I had more to give - I wish I was a better man.

    Mike
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    skicatskicat Member Posts: 14,431
    edited November -1
    quote:Originally posted by mrmike08075
    It's just gotten so hard...

    This foxtrot protocol chemotherapy infusion regimen and targeted radiation therapy course are brutal...

    It's the " this guy is most likely dead anyway - so let's try this option of last resort"...

    I knew that going in - I was well informed - I was well advised - I did my research...

    But your not prepared - you don't know - you cannot imaging what's coming...

    I try to be stoic - I try to be strong - I try to set an example for others - I try to play my part in the treatment plan...

    At this point while I am scared of dying - I don't want to die - I have not given up...

    These treatments at this point terrify me.

    I have accessed and used up resources I did not know I had...

    I try so hard - it's more difficult each cycle by an order of magnitude...

    I wish I had more to give. More to commit to my own battle and more to give to the children...

    I often feel that I have failed despite my efforts...

    I often feel that I have let people down...

    I wish I had more to give - I wish I was a better man.

    Mike

    In red above?.
    Only a better man would think or say this.

    Keep hanging tough!
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    nordnord Member Posts: 6,106
    edited November -1
    Mike,

    I have nothing to offer, except myself. I'll come and sit with you. We can talk about anything including death. Once again maybe I was the lucky one. I was essentially pronounced a dead man walking shortly after I entered the Emergency Room the first time. I was so sick it didn't matter. Being hit out of the blue with Stage 4 cancer and being that sick tests one's beliefs, faith, and character to the limit in very short order.

    Over my next days in the hospital I had time to think and to consider (digest) my prognosis. I decided it would be best to be totally honest with everyone including myself. One of the most difficult moments in my life was when I had to tell my two sons that my cancer was at best treatable, not curable. Everyone at that time, myself included, thought I might have days or possibly weeks left at best.

    My first appointment with the oncologist was within days after I dragged what was left of myself out of the hospital. He suggested that chemo might ease whatever time I had. Mike, I would have declined save for my wife and my family. Death seemed like a pretty good option by comparison to a chemo series, the pain, and the physical wreck staring at me in the mirror. I had no hope of regaining a real life.

    You speak of being afraid of death. I'm afraid of the process of dying, not death. Depending upon one's beliefs and the reality of what happens at death which none of us know for sure, either the curtain will go down permanently or we'll walk into what we're told is a continuation of our existence. Either way a release from this life. In many cases not a bad thing either way.

    Anyone having faced a prognosis of imminent death must consider the prospect of dying. Denial is futile. Death will happen. Maybe sooner or maybe later, but it will happen. Cancer is a blessing in some ways because it forces one to consider and prepare for what most healthy people never really think about.

    Mike, it seems to me that you have options yet open to you. Perhaps you'll choose to die. Perhaps the chemo or the cancer will kill you or perhaps it might allow you to live if you can suffer through it. Perhaps you'll choose to live and be damned with the pain and suffering. Perhaps you'll throw in the towel. You're NOT a weak man even though you might feel so. You're also a good man of faith. I'd opine that if death takes you, then you have little to worry about, except making sure that you're as ready as possible.

    For myself I've disappointed everyone. The Reaper has visited me at least twice, then left in frustration. Here I am a year past my diagnosis on no medication and without pain. Maybe it will all crash tomorrow, but in the meantime I've apparently been tasked with completing unfinished business. For all I know you may be that business. Thus, my hand is out to you.

    LIVE!
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    gearheaddadgearheaddad Member Posts: 15,091 ✭✭✭
    edited November -1
    I wish I had more to give - I wish I was a better man.

    Mike

    In red above?.
    Only a better man would think or say this.

    Keep hanging tough!

    No truer words have ever been spoken(printed).
    You are an inspiration, Mike.
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