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I caved

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26 Re: I caved on 3/29/2017, 6:46 pm

Your dad had mental fortitude. He took his problems in stride, he never projected the negative aspects of his life on others, never ever.


It was his positive attitude about the next book he was going to read, or the next energy innovation. He was really looking forward to solar shingles. Your dad was my age and we were only separated by two weeks in our December birthdays, and his California upbringing brought so much to the forum as he explained things about California when he was a kid. I simply spent the entire day in my chair. I did stain some fencing this morning, but I slept most of the day......it is that time to sleep a great deal......nothing wrong with long naps. I just am looking forward to returning to Illinois as we are wrapping up the repairs to one of the rental homes, and I will get on the bobcat and do some dirt week hopefully next week if I have more energy.

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27 Re: I caved on 3/30/2017, 7:02 am

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Take care, Seaoat. Sounds like you know the balance between being busy and resting and smart enough to take a pill. No problem with that at all. What about medical marijuana? Has your doc prescribed?

28 Re: I caved on 3/30/2017, 10:06 am

SheWrites wrote:Take care, Seaoat. Sounds like you know the balance between being busy and resting and smart enough to take a pill.  No problem with that at all.  What about medical marijuana?  Has your doc prescribed?  

I agree with SheWrites, Seaoat. Ask your doctor to prescribe medical marijuana. It works on different pain receptors than the opiates. And please forget about the stigma attached to either.

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29 Re: I caved on 3/30/2017, 10:16 am

2seaoat wrote:It was his positive attitude about the next book he was going to read, or the next energy innovation.  He was really looking forward to solar shingles.

Boy. Every day, I realize more and more how well you knew my dad. He didn't get out much for the last decade or so, but I'm learning that he had many, many friends. That really makes me glad. And you're right, dad never felt sorry for himself. He always thought that he had a good life, in spite of his challenges. And those solar shingles. He really wanted to put them on my parents' house. He put aside funds for mom to remodel, so who knows.

It sounds like you have your ducks in a row, Seaoat. It is very clear that you care about what you leave behind when your time comes. Dad did that, and it has made such a difference in our lives. I admire you. You are teaching me a lot.

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30 Re: I caved on 3/30/2017, 11:11 am

ZVUGKTUBM wrote:I'm unaware of the personal politics that people are talking about in this thread, but I just want to say that you are an inspiring person. I know dad really admired you. He talked about you and your struggles often, and he was really impressed with your mental fortitude. He probably didn't see himself the same way.

I hope that you are able to find some relief in whatever way you see fit. I care about you.


You may not know it but your dad is still speaking on this forum. Only yesterday I read something he wrote about five years ago that helped enlighten me about the history of this forum and the people who post on it. I've only been posting here for a little over a year and sporadically before that. I've been reading this forum since about 2012. The comment I found by your dad helped fill in some of the blanks I wondered about. I didn't talk much to your dad but I think some of my pictures in regard to a certain ex poster must have tickled him because he requested that I repost them. I didn't agree with your dad on everything but I liked him and I think he liked me. A few months ago someone posted that we are all forum ghosts, it may have been seaoat but I'm not sure. I can't thank your father for the post I found yesterday so I will thank you instead. Your father is an important part of this forum and he will remain so as long as his words can be read on these pages.

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31 Re: I caved on 3/30/2017, 1:39 pm

No medical pot yet.......the pain I am experiencing right now is way beyond what medical pot could address. However, I may still consider the same, but I believe I will wait until they tell me I have less than six months, and they believe I have longer. I have better news which probably explains the pain levels and how tired I have been. My hormone levels had shot up at the end of last year which usually means the cancer is advancing and the symptoms are becoming more intense. Normal is 200. I have been at 400 or higher since 2011. Here is a chart which shows my journey since 2014.


I was in deep trouble when my hormones rose to near 3000 in 2014. It was time for me to die. However, Northwestern is number 1 in the world in radio embolization as they have perfected much smaller beads which allow them to do repeated attacks on liver tumors and smaller amounts of radiation. I have had five operations on my liver. My cousins husband who died ten years ago went to Moffit Cancer Center in Tampa which is a world leader in endocrine cancer, but they were only able to do two surgeries using radioembolization with larger beads. He was dead 1.5 years after the procedures. He was exhausted after the first procedure and told my cousin that he would not do the second.....he did do the second, and had a pretty good quality of life for about 18 months with an unpleasant month at the end.

They jumped back up to eight hundred, and since the surgery they have dropped. The pain I am experiencing is those tumors having necrosis over the surface combined with the growing bone mets in my spine. This is good news that the hormone levels have dropped and despite the bad place I am at right now, it does give me some more time which I hope the pain levels will reduce at they did with prior surgeries......this time with the bone mets, I simply am no longer strong enough to fight the pain and although I have taken no more pain pills since I have been resting, I am very optimistic with the email I just received on my latest blood tests.

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32 Re: I caved on 3/30/2017, 2:28 pm

I still haven't found a medical pot that works that great. There are basically three types... sativa, indica, and cbd. The sativa is strong... but mostly for intoxication/recreation. I didn't like it very much... it didn't give pain relief... it honestly made me fixate on it and feel anxious. The indica is less radical and makes you feel relaxed as its high in the cbd's (like mowi wowi and other sensimelias)...and provides some mild pain relief. It's the one I get. The cbd is non intoxicating and what is the most recommend for pain. I didn't notice any pain relief and it's more expensive as it's extracted from the raw plant. What I do is wait until I'm through with running around driving (the same w pain pills) then take a single puff every few hours but stop about an hour before bed. It can sometimes make my mind race around... but really doesn't last long. The edibles can be bought in each of those 3 categories... but I didn't find the results as consistent or effective... tho most people do.

So to conclude... it helps a little... but really doesn't provide enough relief to replace the pain pills.

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33 Re: I caved on 3/30/2017, 2:56 pm

So to conclude... it helps a little... but really doesn't provide enough relief to replace the pain pills.


Yep, almost exactly what others are saying. Low chronic pain levels, I think it can work. However, I just entered a whole different level with these bone mets, and I sensed my oncologist does not have much faith that Medical pot is effective against the pain I will be experiencing, and they are shocked I have not refilled my opiates until now. That is three years since the last refill, but I think the hard physical work where I fall into my lazy boy in exhaustion has been my salvation, but now I am facing real fatigue which comes with liver cancer, and I think the game is now out of my control. I hope you are getting some relief, but back and shoulder issues can be unbearable.....and as those spinal mets grow, I will sadly join you.

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34 Re: I caved on 3/30/2017, 3:17 pm

I'm doing ok. The pain in my left arm and general weakness in both can be fixed to some degree by another surgery. They would pull the fusion plate off the back of c3-c7... it just sounds too risky and too invasive. I think I'm just going to have to live with it... unless some major issue forces surgery. But I am going to have to get my lumbar fixed... but I'll wait until after summer.

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35 Re: I caved on 3/30/2017, 6:14 pm

Find the best to do the surgery. If you can travel to find the best.....travel. I have gone with local and regional so called quality care, and what a messy trail they left. Finding the best is not that easy. Like lawyer commercials, doctor commercials tell you even less. The Hospital where they blew my post lung removal care by being unaware of the standard of care for endocrine cancer runs great tv commercial, yet the required sandostatin shots......three years later I had my liver mets, even though my pulmonary doc taught at the University of Illinois, he had only seen two of my type tumors in 30 years, while my pulmonary doc at Northwestern does 150 surgeries on endocrine lung tumors a year. It is not easy finding the best. Often, they will not take you as a patient. I have too many friends who have made mistakes on back surgery.....to the last one they argue to try alternatives before being cut on......

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36 Re: I caved on 3/30/2017, 8:11 pm

PkrBum wrote:I'm doing ok. The pain in my left arm and general weakness in both can be fixed to some degree by another surgery. They would pull the fusion plate off the back of c3-c7... it just sounds too risky and too invasive. I think I'm just going to have to live with it... unless some major issue forces surgery. But I am going to have to get my lumbar fixed... but I'll wait until after summer.
Yes it does.....repeat surgeries on dicey. Did it fuse and are the screws intact....sometimes the screws loosen and the plate shifts.


Surgery, to me, is a last resort.

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37 Re: I caved on 4/10/2017, 3:15 pm

I am starting to feel that there is no upside anymore. I did get the lull going, but for the last 10 days I am spending 20 hours in my chair. The constipation is more painful than the liver. I just had somebody asking about the lot next door where a lawnmower was at, and this guy rings the doorbell why my wife was at the store, and explained that we do not own the lot. He then wanted the phone number of the person who did, and was rather aggressive in his questioning and entitlement. He left immediately after I blew up on him. I have sent the wife back to get some prune juice, but I will not see the doctors until thursday, and this liver surgery is more like what my cousin described about her husband not wanting anymore surgery. I was so much stronger in 2014, but I am very weak now, and where my cousin told me he improved and did the second surgery, and lasted a year and a half. They are going to decide on the chemo embolization on the second rapid growing liver tumor, which will not last very long, probably less than six months when I will have to do it again......I am getting tired of this, but I have never given up on anything. I so understand Bob's decision now.

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38 Re: I caved on 4/10/2017, 3:35 pm

2seaoat wrote:I am starting to feel that there is no upside anymore.

 I so understand Bob's decision now.

Deepest sighs here, Sea -- so very, very sorry for what you're having to endure.  No useless platitudes to offer, but only assurances that you have far exceeded what most men could accomplish in your situation, and no one would or could ever in a million years call you a quitter, no matter what.   Hope you'll hold out for the possible chemo embolization -- things could still improve! -- and in any event you know everyone here will be sending their best hopes and good vibes, or prayers, or whatever else they do.  You are a very rare and special individual, and I'll repeat what I've said before: your illness and your decisions regarding it do not in any way diminish you as a person.

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39 Re: I caved on 4/10/2017, 4:12 pm

2seaoat wrote:I am starting to feel that there is no upside anymore.  I did get the lull going, but for the last 10 days I am spending 20 hours in my chair.  The constipation is more painful than the liver.  I just had somebody asking about the lot next door where a lawnmower was at, and this guy rings the doorbell why my wife was at the store, and explained that we do not own the lot.  He then wanted the phone number of the person who did, and was rather aggressive in his questioning and entitlement.   He left immediately after I blew up on him.  I have sent the wife back to get some prune juice, but I will not see the doctors until thursday, and this liver surgery is more like what my cousin described about her husband not wanting anymore surgery.   I was so much stronger in 2014, but I am very weak now, and where my cousin told me he improved and did the second surgery, and lasted a year and a half.  They are going to decide on the chemo embolization on the second rapid growing liver tumor, which will not last very long, probably less than six months when I will have to do it again......I am getting tired of this, but I have never given up on anything.  I so understand Bob's decision now.


If you have exhausted the OTC laxatives and stool softners , call your doctor for a prescription medication for the constipation.  You can really get into serious problems if it is not handled appropriately.

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40 Re: I caved on 4/10/2017, 5:47 pm

Prune juice helped. I will try it at noon Tuesday. Meanwhile, I am consuming a great deal of bottled water.

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41 Re: I caved on 4/10/2017, 6:05 pm

losing weight, so I had rice crispy with milk, and will have chipped beef on toast for dinner. The Prune juice relieved a great deal of pressure, but I am trying to drown in water and every once and a while vanilla wafers.

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42 Re: I caved on 4/10/2017, 8:46 pm

We grew up eating chipped beef on toast. Mom made it and it was awesome. She used the jar of Armour dried beef in a thick white sauce, served over oven made toast.

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