The Meaning of Suffering
I'll try to reign in the philosophical babble that I do. Understanding I can't really be helped right now. Mental illness and cancer is a wicked cocktail. Along with gastroparesis and tinnitus among other things. I'm scheduled to have surgery on May 9th. Having all of or parts of my pancreas, spleen, small intestines, colon, and/or gall bladder removed. After 2 months if by some miracle I dont have any complications and recover they want me to immediately start on 6 months of chemotherapy. I've committed to both, although the chemo treatment will have to be touch and go and tailored to my needs. I have had a pre anesthesia test, pre mental health evaluation, ekg, lab, and given a litany of things I need to do from getting more protein, to practicing my breathing on some plastic thing to strengthen my lungs, to prep, and etc.
Comments
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Oh Rod, that was one of the
Oh Rod, that was one of the most moving things I've ever read. So raw and real. It must have been very hard for you to go through the emotions you must have to be able to write that. It's so pure.
I don't know what to say. I'm glad that you've chosen to go the surgical route and then chemo. It takes guts to agree to those things. The surgery might not be as bad as you anticipate or it might be worse, I hope the former. Moving in with your mom is a good choice. Surgery causes not only a certain amount of discomfort but it's also tiring. It lasts for a few weeks. Having someone to take care of you is a good idea. And you're not supposed to drive for a while, a month I think, or 6 weeks.
There's no doubt you've been dealt a pretty crappy hand in life. I'm sad that you've learned to compensate for it but things haven't changed for the better. I'm just sad for you Rod. This is bad enough without the extra issues you have. As I've told you before, you think you're not tough but you are. After every setback you pick yourself up, dust yourself off and get on with it. That's strength, that's courage, and that's toughness. Toughness, grit, strength, whatever you want to call it isn't being a war hero or a Sylvester Stallone character or anything like that. It's getting through the everyday personal crap that life brings us regularly. It's going to work every day, it's making a life despite drawbacks, it's taking the chance on a relationship far away, and it's staying with a young, dying cat until someone comes along to take it away. Many people would have crumbled in your position. Many wouldn't have even tried. You, however, have done the best you could with what you had and that's something to be very proud of.
I fervently hope that the surgery will not be as bad as expected and the chemo will work and you'll have a life to be thankful for in the end. Sending you hugs, Rod. I am in awe of you.
Jan
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You Are A Lot Stronger Than You Think
My story is not exactly the same as yours, but I had it really tough when growing up. I know it is not easy to reflect on the positive, but you have accomplished a lot and overcame a ton. If that is not strength, then I have no idea what is.
Also, as an aside, I have tinnitus from a doctor messing me up about 6 years ago. It is brutal. There are times I want to put a screwdriver in my ear, though I know that won't stop it because the nerve endings and the rest are what is behind it. I have adjusted somewhat to it, but there are times where it is out of control for weeks over and over where I am hearing it (as compared so compensating) and it really can push me to the edge.
In many respects it is almost tougher than chemo. And this will sound weird, but often on chemo whatever steroids and drugs they give me (or perhaps being so wiped out for a few days) actually makes it stop or subside. Or reduce the level so it is not crazy loud. Along these lines, there are places where you may be able to get an earpiece where there is counteracting sounds. I need to go back and look into it. Basically it is a variation of white noise that is tuned to the frequency of you tinnitus. Like I said, I need to look into it more.
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When I heard Robin Williams
When I heard Robin Williams ended himself, I was with the wife at a specialist who had surgically transfered a patch of skin to the left side of her head, so she could endure more radiation treatments to slow the regrowth of tumor in her head. I told the surgeon "too bad Mr. Williams didn't get some kind of cancer, he'd be too busy fighting to stay alive to want to end it". A toss-off remark for sure, but I was 2 months away from my third major surgery, Cindy was losing her fight, and a wealthy, successful, superstar comedian offing himself over aging issues, seemed indulgent at the time. In truth, I have no idea what he was dealing with, and the same is true for everyone else out there. My tinnitus is ringing away, happens with the morning coffee, any pill-taking, or just randomly throughout the day. I think of all the rock concerts and cranked up stereos, and figure I did it to my self, but it rarely is more than an annoyance I live with as a cost of aging. Perception is everything in this life, it shapes whatever meaning one chooses to carry with them, and controls what things in life one chooses to remember and measure their lives by. Most living creatures simply are, until they aren't, we humans, and some other higher level species get the double-edged joy of awareness of our existence, along with the knowledge that decay and death follow, without exception. Most of us consciously choose to keep our focus on the "good stuff", however relative that concept might be. Your focus is fixed on the hardest, most painful things in life, stuff others would work very hard to forget, you have an instant recall of, no doubt the curse of an intelligent mind. Sometimes ignorance can be bliss, relatively speaking. When I talk about being like a dog, it sounds silly, but dogs really don't regret or replay the past, and don't fear or torment themselves with the future, they live in the moment. They also don't search for the meaning of life and suffering. People do, but usually as a way to help carry the load. You have professional people that you talk to, so trying to give a "pep" talk about your perception amid your situation and issues, isn't useful. I'm sorry life's dealt you this hand, I wish there was a simple way for you to drop all the painful memories, and find a way to celebrate the little things more. Even the big "winners" in life eventually wreck themselves if they don't learn to value the small stuff. In the end it's all humans really have. I don't know if it's just me, or whether it's a peculiar view to hold, but I find comfort in the idea that humanity's existance is but a blip in geological time, in a vastness we can't even wrap our minds around. Like Carl Sagan's "Pale, Blue Dot" solliloquy, I like seeing my problems for the tiny, insignificant things they are. That may not work for another, but that's one way I look at it all. Hope you catch some breaks on your path................................................................Dave
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Great Points Beaumont
I had a longer post in reply to yours, but you nailed it. The bottom line for me is I have a good ability to forget the bad things or they become just a factual thing to relay, as compared to emotional response, on the times they come up in conversation.
This even gets me through chemo now. A day out of the final daze of this round, and I know conceptually it really s--cks, but now that I feeling okay enjoying the good part of the cycle.
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Jan, beau and new
Mahatma Gandhi once said, "Everything we do in life will be insignificant, but its very important that you do it." While some might think this quote is a contradiction, I find it profoundly relevant. Whatever I do, good or bad.. whatever decision I make, right or wrong.. ultimately won't really benefit me in the end. But our time here, albeit incredibly brief, is specifically catastrophic to our lives and those who live after us. There were people that created things hundreds and even thousands of years ago im benefiting from today. Everything has a purpose. As annoying as insects are to me, they have a purpose, eliminating wastes and decomposing animals. Bees make honey but they also pollinate plants that herbivore animals eat. And the animals and plants we eat provide us food. Everything that happens in this universe seemingly happens in a near perfect synchronicity that helps preserve the continuity of our species. So yeah, its very important that I go through with this surgery and chemo, and radiation or whatever hell else they will do, to set a example. Ill either be one of those positive statics, a epiphany to a future pathologist or a inspirational story to someone years after im gone. Or a negative one, that is thrown in with all the dire prognosis's.
I told my therapist once, you wouldnt be able to distinguish night if there was no day. So people would not be able to distinguish what happiness is, if there wasnt people like me to show them misery. I'm pretty sure Robin Williams came to the conclusion in his life that nothing, not love, not family, not his children, not faith, not the threat of eternal damnation, not even fear was worth the suffering he was going through. Pain, sadness, grieving, mourning, sickness, is all natural and normal. Suffering isnt normal. Suffering happens when the mind and body can no longer cope. As humans we can train our minds to be as strong and as positive as possible, but we are finite in our ability to cope.(except for maybe JanJan). I'm still here somehow. I have a lot left in the tank. I am aware of that. I just haven't been able to find meaning or a purpose to empty the tank.Ive never been to a concert, party or dance club but yeah... I remember ever since I was little cranking out the MC Hammer and Michael Jackson cassette tapes listening to music on the highest volume possible. But I tend to believe it was moreso due to the statin drug cos i cut back significantly the last 10 years or so due to being allergic to pop music. Unless chemo makes me violently ill, i cant imagine it being as bad as tinnitus. You can eventually recover from chemo. I gave up believing my tinnitus would go away. I have a fan running in my room constantly. There are certain youtube tinnitus specific videos that alter the sound as if i was turning a dial on the radio. Its fascinatingly insidious.My mind lost the ability to perceive. Everything I interpret is through the lens of a fun house mirror. Im not delusional, though I would understand some who read my posts would think so. I just cant tell my mind what to do, how to think, what to feel. Anymore than i can choose what to dream. Everything up there is reactionary and responds in a way pertaining to my life experiences. Yes humans are cursed with knowledge. Except maybe when we were neanderthals. I hate the fact that I sit here and think about what am I, where I came from, how did we get here, theories about when time started, what created the universe, and what will happen to me when I die. Will my energy or consciousness end up somewhere worse or be infinitely recycled in the universe. Is there a God. Did man create God to cope with his own awareness of mortality. I dont think animals are aware of such things but they definitely know where they are on the food chain.I think people need a healthy balance of wonderful, exhilarating, and painful experiences. The mind is fragile. A small trauma can cause a ripple in your life that can affect you for a lifetime. Im not sure i fear my knowledge as much as I fear my ignorance. None of those questions will ever been answered and I dont think are ever meant to be answered and im not sure I want to know all the answers. Some of the best movies have open ended endings leaving everything up for interpretation. All I know is that for the billions of years before I was born I have no memory or knowledge of anything. I was probably nothing. Unfortunately I have no memory of myself when i was two years old either. So I could have been something as well. If I knew that I was going to return to nothing and everything just faded to black, Id probably be reasonably content and significantly less fearful of death. I actually told somebody once, what if I dont like heaven, I have to be there forever? lol.I will celebrate the day I walk out of the hospital, ripping off the wrist band, with a prescription of pain pills and my own bed to go home to, knowing I just went through the most daunting and physically challenging experience in my life. It may be small and short lived cos soon I will be starting a half a year of chemo. Morbidly I do think about the fact that no matter who you are, where you come from, rich or poor, no one lives forever. And my life at 60 years old would not have been much different than now at 40. Im not going to be missing much except more loneliness and decay. But... I did want to stick around. For the "little things" that made life bearable. And while insignificant, its very important... to me.I just need support. A mental and emotional version of a epidural drip. I need to balance out the negative with the positive so I can fall somewhere inbetween. If youve had major open surgeries, share them with me. I have mental breakdowns when I get to a point in the road where I cant see where im going. Im driving in fog at 90 mph and i dont know if im going to hit a wall or run off a cliff. I feel like a solider back in the Civil War, climbing a hill with my musket and one bullet in the chamber, occasionally stumbling over the victims of this disease/war and all i hear is explosions and screaming on the other side. I know its bad but I have to get to the top and see whats on the other side for myself. I need more clarity. This is not the time where ignorance is bliss for me. I want to know what to expect before, during and after a pancreatectomy, colotectomy, and spleenectomy surgery. From the moment your eyes first opened in ICU, to the moment they removed all the tubes, to the time you were able to walk more than 3 steps, to how much pain you were in. This is why I never enjoyed many of my birthdays. I hated surprises.0 -
I never liked suprises either
I never liked suprises either. The days building up to surgery I felt the time drawing closer, I just keep as busy as I could days and evenings, popped the Xanax and read until I fell asleep. If I woke early I repeated the steps. The mornings of surgery, 4am wakeups and the 90 minute drive[impressive for Beaumont to East Hollywood] I focused on the steps ahead of me. Got in, got called, prepped, said bye to those who brought me, took the Valium that's usually offered, and let my mind wander as much as I could. When I woke in recovery I got aware fairly quickly, the benefit of and epidural. I felt alert and normalish, but not moving much. One time they stitched a line to my cheek[why I don't know] but then they came along checking and removing different stuff, talking to me as they went. I was feeling good, both because of the drugs and that it was done. Much later I asked for more pain stuff on the first two big surgeries, because I was tolerant of opioids from prior use. I got smart on the third by telling them ahead of time and they used dilaudid instead. Except for the second surgery, where I pulled back and arm muscles, the pain didn't really amount to much until a couple days later when they needed me to move, or I had to cough[hug a pillow]. The next worst pain is when they want you to try and get up, and it hurts, but it's tolerable. For me the anticipation and dread before were vastly worse then the time after, and when they start unhooking the tubes, the foley, everything feels one step closer to getting out. Peeing again, pooping some tiny little black mark on the pad, all feel like milestones. One the third day I stood for a minute, by the end of the fourth, I was doing laps around the ward, Comes the fifth day I'm ready and begging them to cut me loose a day early, and every time they did. Just to be out in the sun again felt good, and reaching my own bed was like coming home after an arduous journey, moving slow but mentally feeling fine. That was my experience step by step on four surgeries where they opened me wide, like a foot up and a foot over. With me the mental stuff made the physical end of it seem relatively easy. ..........................................Dave
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I've had several surgeries. I
I've had several surgeries. I had my gallbladder out, which was unpleasant but not bad. I had a hysterectomy, which was really easy and I went home the next day even after being awake all night talking to my roommate. A young man with severe depression much like you, Rod. I had the initial tumour removal surgery for the colon cancer and while the first night was horrid it got easier quite quickly. They said I could go home when I was able to walk the ward five tmes do that was my goal. This last one where they took out more bowel and repaired the fistulas didn't seem very bad at all. People who came to visit were surprised at how good I was. Thena couple of days after I had a really bad day. They say it happens sometimes. And the day after that I was better again.
I'm surprised that the incision itself doesn't hurt very much at all. Both of mine have been quite long. But the muscles are disrupted and when you go to move to get up or to changes positions in bed or whatever they tend to grab and hurt. But it's not something you can't stand. And typically you start getting better as soon as you wake up from surgery. Every day is easier.
Every time I've had sugery the nurses have been great for the most part. They try to sneak me things I'll eat because the hospital food is crap. They'll let me sleep in in the morning even though my breakfast is there. They try to do whatever it takes to make you more comfortable. They'll give you a sponge bath. They have very cool shower caps that have sone sort of solution in them that somehow washes your hair without a sink. They'll give you a blood thinner shot every day to ward off blood clots after the surgery. You'll have the choice of either having it in the arm or the tummy. The tummy is better. Make sure they do it quick. If they do it slow it can be bothersome after. You'll be on an IV and for the first day or two they'll have it set up so that you can dispense your own painkillers, morphine or whatever works best for you. It won'tlet you do it too often but you can press the button for more anytime. If they see you've been using it a lot they'll figure out a way to deal better with your pain.
They'll teach you how to sit up in bed so you're not hurting yourself. Lying on your side and pushingup with the hand closest to the bed. They'll walk you to the bathroom if you'd like. But for the first couple of days you'll probably have a catheter so you won't have to worry about using the bathroom. They'll put it in when you're under so it won't be unpleasant. And taking it out is nothing at all. Hardly noticable.
Every morning when you wake up you'll realize that you're a little better than the day before. If your IVs stay in place you're golden. Or if you're an easy start.
Jan
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Feelings
You have put your utmost feelings on here and that is something a lot of people can't do. You have laid out your bare soul and told your situation and how you are feeling with what you are dealing with. Most of us only deal with the diagnosis but you are dealing with a whole lot of combinations combined with that.
It sounds like you have gotten stronger within this post than I've seen you in the past. Saying that you have accepted what they are going to do and going through with a plan. This is a positive step in the right direction and that is a good thing and you should embrace your first step that is put in front of you - and you took it.
It also sounds like you have a lot of struggle ahead of you which emotionally and support we can be here for you going forward. Always look towards to the future as this can be a way to heal you with many different aspects of your life. Continue the therapy, the forward thoughts coming from your head onto the board and just knowing that people here really do care how you are doing. We are all wishing you the best and will do all we can to help you through this very difficult time.
Kim
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The woulda, shoulda, coulda,
The woulda, shoulda, coulda, is going to wear you out. You need to accept what is for now, and move forward. To do that means doing all the crappy stuff doctors say is ahead of you; if you want to remain on this earth. It is NOT easy, it is and was the hardest thing I have ever done. Your ego, your psyche plays with you all while trying to keep your world as close to normal as possible when sometimes the only thing normal is your own bed. Just saying you will overcome this you can by doing it it a minute at a time sometimes you will look at the clock and surprise yourself damn you let an hour go when you could have said the things you need to or watched your favorite show. Or hugged the ones you love. Anyway, whatever you do, it is right. You are normal to be struggling with all this this crap you have been dealt isnt normal but to those of us who dealt with it is normal. Hang in take in even the most minor item as a win. You ate today score. You peed today score. All these things you fret about are normal, just find away to deal with what is important right now. The other will fade you will see.ease your mind with giving up on things that make you fret in circles. I am a stage IIIC cancer survivor 20 years. They said I would see my kids go to school, college, have careers, families, etc... I now have 5 grandchildrennow, I am 52. My life currently is so screwed up its embarrassing. I am working thru it. I am on the right side of the dirt!! Make it a great day!hugs to you.!0 -
The meaning of suffering
I've been thinking about the meaning of suffering. I have a firm belief in God that will change. But, I see no meaning in suffering. None at all. It's not a state of grace as the Catholics like to say, it's not beautiful, it's not uplifting. It's ugly and horrible and has no reason to exist. Just like cancer. Or war or any other horrid thing we deal with in life. Or that any being deals with in life.
But it is part of life, unfortunately.
Jan
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