So, Hickory having a gigantic Rebel flag flying is not surprising at all. And every racist SOB in that area will tell you that it is "heritage, not hate" behind that flag!
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My little town, Tabor City, is known far and wide as "Razor City", because the citizens loved to have drunken fights with straight razors--this was in the 1940s and 50s! Town was dry, but sits on the SC/NC border. No booze in town, but less than a 1/2 mile from downtown was the "Line" and bootleg joints galore. Combine alcohol, rednecks, women, pool, jukeboxes, & straight razors, and you have all the ingredients for a wild weekend night!
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My paternal grandfather's name was Herbert Gomez Prince.
My first university roommate at Campbell U. was Herbert Gomez.
My grandmother turned white as a sheet when I showed her my roommate assignment card when it came in the mail.
Imagine that!
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In my travels around the US, I rock hounded in every place I went that had anything possible to find. Got pulled over once in Indiana and freaked out a cop by picking up "pretty rocks" by the road as they searched my van.(I did the hippie thing, living in a van, seeing the country.)
1st Yr: NC >VA >WV >KY >OH >IN >KY >TN >NC >VA >DC >VA >NC >TN >KY >IN >OH >WV >MD >PA >NY >OH >MI >OH >NY >PA >MD >VA >NC >TN >KY >OH >MI >OH >WV>NC >KY >IN >IL >AR >OK >KS >CO >WY >ID >UT >NV >CA >AZ >NM >TX >LA >MS >AL >GA >SC >NC
2 Yr: NC >SC >GA >AL >MS >LA >MS >AL >FL
no!!! just a hippie. lindsay was the deadhead. i liked the parking lot scene where i could meet up with other rainbow hippies.
saw one show. Charlotte Spring '92. was sold bunk acid and dead only played covers of other 50s and early 60s bands. They played none of their hits, so it was a huge disappointment. but went to the parking lots of about a dozens shows. Chapel Hill F92, Deer Creek S93, RichfieldF93, Orlando S94, Charlotte S95, Atlanta S95, Tampa S95, great way to score sheets(100 hits) of acid for $100!
did make some cash at shows, mainly from selling ciggies. Sold Marlboro and Camels. Taking a cue from other hawkers on the "Lot", I would cry out "Get your Red Hot Veggie Cigarettes!" & "Get your Ice Cold Veggie Cigarettes!" If someone questioned my phasing, I always answered, "There ain't any meat in these!"
Never had much time for their music. Linds had over a hundred shows on tape. and to me, they all sounded identical. lol
You i loved their greatest hits album. and a few other albums the did. but at their shows, i think a few hits of acid is what made it so awesome to the deadheads. i saw the cure while tripping balls and can understand the appeal. but 'hello little school girl', little red rooster', 'all along the watchtower', 'satisfaction', etc. were performed better by the original artists. also much of their own music they did wasn't really that good, imho gawd, deadheads are so predictable! "let's go see a film of a concert that came out before i was born" "jerry and jebus are the same in my eyes, but jebus never grooved like jerry!"
i gave my son here a middle name of woodstock, met his mom at 25th reunion at yasgur's farm, but he's a stoner because me & his ma were hippies.
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i had troubles with a van not shifting. lost low gears first. actually on road trip back from a gathering in NM. lost 1st, then 2nd. had to rev tf out of it to get going, the van needed a transmission. when i lived in my van. if i was in a strange city and camping in a parking lot for a night with now toilet accessible, then if i had to go, a plastic grocery bag would do the trick if i couldn't hold it until proper facilities were available.----------------------------------------------------------------------------------------------------------------------------------
There was a barista at Boogie's in the "Zoo" that I got to know pretty well. And, as I got to know him, found out he could score bags of weed fairly well. He had a preferred term of bud and it was a "sac-a-gud-weeda", which I thought was a great name for it and a good pun. After buying from him multiple times, I was in the coffee house and paid for my order with a few of the dollar coins featuring Sacagawea, the Native American guide for the Lewis and Clark Expedition. Now these coins had a gold-looking plating and were a flop circulation wise in the US. The guy had never seen one of these coins! He thought I was pranking him by trying to pay with the coins. I explained that it was legal tender and told him to look a the person on the front of the coin. I then explained who she was and how she was significant to the country's history. He did not know that we even had dollar coins in the US! |
| The Sacagawea Golden Dollar Coin |
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From a google review for the Sewee Outpost on Hwy17:
On Hwy 17, outside of Charleston, on the way north to Georgetown, and to that redneck and Yankee retiree paradise, Myrtle Beach, you will find the glorious Sewee Outpost.
Tucked under towering live oaks, you would think that this gem was from another century. Nestled as it is in this bastion of nature, it is without the trappings, and without the tawdriness or gaudiness that is found in normal roadside businesses you will find in 90% of the United States.
When you notice the gas pumps and store full of modern refreshments, noshes, and conveniences, you will be yanked swiftly back into the 21st century. And are lured inside to part with the filthy lucre filling your pockets.
Unique store awaits you with a tremendous variety of fishing, camping and outdoorsman gear, huge selection of snacks and beverages, books, various sundry items, and a few surprises if you spend a little extra time searching around the shelves. You'll find a gigantic selection of candy, some modern and well-known, some old-timey and close to forgotten. You'll be curious as to how they were able to find them all.
The great, friendly and welcoming staff are there to assist you in leaving your money behind. Try not to linger as your eye will be enticed by the wondrous wares on display.
Great country ham biscuits!!!!
(If you need an explanation of what a country ham biscuit happens to be, then we all know "you're not from round here".) So, walk confidently and self assuredly to the biscuit case, and grab a large selection of the various biscuits on display. Pay the sweet ladies at the counter for them. Go back to your car, get right with God, and enter culinary heaven as you take the first airy, buttery bite.
Whatever you do, don't waste your time stopping at the cluttered, cramped, and "quaint(if you're an alcoholic albatross)" Sewee Restaurant on the opposite side of the road a few hundred feet down from the Fabled Sewee Outpost. There is absolutely nothing on their befuddled menu of ill-prepared swill that could compare to the Outpost's delectable, delicious, filling, and downright sinful country ham biscuits.
Prepare to cover your wee children's ears as someone may let a bit of foul language slip once they've raced to the back left-hand corner of the Outpost and find these treasures sold out for the day!!!(that's why I told you to go out to your car and get right with God. You may need his help if you cleaned out the biscuit case and someone was denied their piece of heaven that day. And that person notices you sitting in your car, surrounded by biscuit wrappers, engorged on biscuits, covered in biscuit crumbs your neophyte self let slip from your fingers as you gobbled down biscuit after biscuit after biscuit.)
Yes, you can offer me accolades once you have fallen in love with these biscuits. And, if I understand correctly, they offer other cooked foods as well. Wow, if these other foods are anything like the biscuits, it could make an atheist look for salvation in a higher power!!!
Super clean restrooms.
Worth a stop for nothing more than the ham biscuit!
GET A HAM BISCUIT!!!
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in my University yrs, i spent a summer working with a master carpenter, also worked on a paint crew. hung drywall, and done so many other construction things growing up on farm, while traveling, on the two other houses i owned. always did my own fix-it projects. my dad went blind from diabetes when i was 12-3, and after that, i did everything that had to be done to run the farm, handle our workers and tenants, the 30+ herd of cattle, gardens, firewood production for us and for sale-delivery-collections, etc.
when i moved back here, i made the repairs i could to the house. hired people to do roof replace windows, doors, & siding, did everything else myself. rebuilt the farm itself and took care of my mom and dealt with her ever-insistent need for attention--medical, personal, emotional, and dealing with interfering siblings that didn't want to do anything to help me or my mom, but wanted every dime she had. the emotional toll was drastic on me. i aged ten years in just a couple.
getting vols to come to the farm was great. the first year it was a way to have free labor to do things i couldn't do by myself.
in the second year, i realized that of of these kids wanted to learn as much as they could, and i was a teacher(and loved it) right out of uni. so i shifted my focus from having free labor, to teaching(and learning more myself) these kids all the life skills i could. not just farming, but everything i could pass on, whether knowledge or skills. from planting, harvesting, plant and animal care, butchering, preserving food, making a fire, shooting, swimming, even dancing lol. and it gave me something to do with my land and my time, and, most importantly, my mind. i left a university town where i spent most evening reading in coffee houses and having great conversations with intellectuals, professors, and students, and a few nuts. constant stimulation of my mind. then i moved to bumfuck nowhere. when i moved here, the collective IQ raised 30 points. lol
because of me, more people in this town experienced meeting foreigners than ever in their lives. people learned that if they saw a group of young people walking down the road, "talking funny", that they were staying with that Prince fella who has the farm on the edge of town, Ms Peggy's and Mr. Fat's son, the one who fixed up the Prince house. i had local tv, and papers contact me to do stories about what i had going on, but always refused. this wasn't something i was doing for attention or anything other than giving back. instead of a roadside stand to sell extra produce, i gave parcels of veg & fruits to local elderly folks--the normal folk I knew growing up. but Nicholas came in and instead of learning to work from sun-up to sundown to working volunteer hours 9-noon, 1-3, and those are still the hours he works. instead of puffing at the end of the day, after a good dinner, relaxing in the living room and chatting, he smokes all day if he has it, and his productivity slows down loads.
he really needs to get used to working normal hours, 8 or more a day. jumping on chances for overtime, etc. he needs to learn about hard work. he cannot comprehend a year i had in uni, where i was taking 20 credit hours, auditing a 5 hour pharmaceutical biochem course, working 2-3 hours lunch shift 11a-1/2p at a local pizza/sub joint, plus afternoon/evening shifts on weekends there. and worked 5-midnight at a distribution warehouse M-F. was married and had my first house then, at 21. all that to make it. went through uni years where i supported myself and paid for it all with scholarships, grants, loans, nothing from parents as they didn't have it, but it was nothing as i grew up running the farm for my dad.
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***My Cancer!***
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A diagnosis of cancer is such skull-fuckery, that it is not easy to put into words. if you notice, i only presented the facts with mine, never really any emotional posts
remember that i had my oldest son, Justin. die. then, in under two weeks, I got my biopsy results back, all in under two weeks. major brain-fuck/major heart-stab, but, hey, gotta deal, or you cannot get thru it.
So here it is:
For a little over a year now, I have been battling another cancer.
This is a battle that I started fighting 6 years ago in 2016, and thought I won.
Then, by the end of 2017, it was back and I had to deal with it again.
In Jan 2018, I lost my voice, and with it, my ability to really influence people as I had always been told I had a "way with words".
https://youtu.be/4eDQen1CLAU
A couple of weeks after the laryngectomy, a fistula developed. To be precise, an esophagocutaneous fistula opened a few inches above my stoma. If I drank water or any fluids, it would leak out of the fistula and, if i was lucky, down the skin of my neck. Or, at worst, into my stoma.
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| Pectoral flap fistula repair-Feb 2018 |
ml.
Oncologist ordered a routine blood test a few weeks after my 10 Feb. surgery.
Results came back showing cancer DNA in my blood.
CT scan yesterday showed
another sarcoma in exactly the same place as before and almost the same size! Still only completely localized.
Meet with two ENT surgeons on 20 Apr. Oncologist yesterday said this surgery will be followed by a round of radiation and immunotherapy. Not sure about chem. Overall prognosis isn't that great. Keep me in your thoughts.
Once this is done, I want to do some international travel. If anyone has any frequent flyer miles they would like to donate to me, let me know. Not sure of how long I have to do bucket list things, but I do want to check off a few things.
But I kept going, I didn't let this get me down.
Last year, I notices a burning in my throat.
I had to push my doctors to check it out.
Then when it was, I heard that damned "C" word again.
Can you imagine what that was like for me???
Then, there were tests, scans, surgery in November.
Told surgery wasn't successful, so we need to do more.
Told 2 days before Christmas, that I had 1-3 years left to live--that was a helluva Christmas present, don't you think?
I had to fight to get them to try surgery again.
But they would not be aggressive like I wanted.
In February this year, more test, scans, another surgery--yaaaaaaaaaaaaaaaaaaay!!! this one was successful, all cancer gone!
One oncologist had ordered a blood test but it was not done until over a month after the Feb surgery.
A new sarcoma, same size as before, in the exact same place.
it burns, sort of like extremely bad heartburn. was like this before last surgery. pain meds help. still waiting on a date for surgery
More tests, scans, and a very aggressive surgery--complete neck dissection, a muscle transplant to repair the dissection.
I died three times during the first week after this surgery--luckily, my spirit's will to live was stronger than my body's wish to die.
Not even a few weeks later, I began chemo and radiation and spent 6 weeks away from my home, my comfort zone.
Even after all that, I'm still not sure if I am in the clear.
I still may only have about five years left before another cancer appears.
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welcome to my world. being in a small town made me basically give up on finding relationships other than thru the internet. now multiply it by a factor of a thousand since i've become a laryngectomee.
a holy throat isn't very appealing to the vast majority of women. seems that most throat cancer folks who are in relationships, had them for many years prior to getting cancer mobility and strength of left arm is as strong if not strong than a year ago when this current bout with cancer began. mobility is fine with range of motion, etc. even with latissimus dorsi transplanted.
other things:
left arm cannot support my weight for most yoga positions, so not sure if there is a non-traditional type of yoga which can be done without using left arm as bodily support. that has gone on since pectoral flap in '18. have had yogis volunteer here and asked about yoga that can be done without using left arm and all were going to look into it for me, but none ever got answers to me
did you have chemo? chemo and rad can cause brain fog. which can improve. i've noticed a bit too, but i'm on a heavy med load due to side-effects
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I've been a lary since 2018 due to laryngeal cancer. And in 2021-2, dealt with surgeries and treatments for oropharyngeal cancer.
I've had 5 surgeries too. Chemo and two bouts of targeted radiation therapy
Radiation is the gift that keeps on giving.
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Found out last year that one of my great uncles had a lary. But he died about 6 months later.
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I had major surgery(neck dissection and reconstruction due to cancer) in mid-May and a several week(15 days) hospital stay afterwards.
On paperwork I filled out prior to the surgery, it asked what was my "preferred name".
My name is Nicholas and I usually write "Nick" as my preferred name.
This time, I decided to have some fun and wrote "McLovin" from the movie “Superbad” instead.
My ID bracelet and all hospital records had “McLovin” on them. Even correspondence from the hospital used “McLovin” as my first name”!
The staff loved it and apparently news of the name spread like wildfire through MUSC system where I was staying. A nurse posted a blown-up copy of the fake ID from the movie on the door of my room. All of the doctors and residents called me “Mr. Prince.” The rest of the hospital staff took great pleasure in calling me “McLovin”! And I really enjoyed the way some would come in say ”hello, Mr. McLovin”.So, for two weeks, I was the most talked about patient throughout the hospital there!
Now I'm back for six weeks of radiation treatments and chemotherapy, and changed preferred name back to "McLovin".
A reply to above:
You had neck surgery and your name is Nicholas? You missed the opportunity of a life time there bud...
You should have wrote Nicholas de Mimsy Porpington, or you know,
Nearly headless Nick.
Side note to this:
Had a esophageal dilation procedure in December. A farm volunteer, who came with me to drive me home. As we were leaving the hospital after my procedure, I showed her my surgery ID bracelet with the "McLovin" name. Then she reached into her pocket and handed a novelty "McLovin" driver's license to me. I loved it! She had the opportunity the evening prior to wander around old Charleston(a lovely area, full of history and flowers of some type blooming year round). She was checking out a shop and purchased some souvenirs to remember her time in Charleston. As she was paying, saw the novelty license for sale at the register and snagged on for me. Looking forward to the day that I get pulled over leaving the hospital, so I can whip out the McLovin DL "by mistake" and hand it to a cop. Bet I get a good laugh and no ticket! Fingers crossed. lol
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"Dr. Death"
In 2021, a biopsy found that I had an oropharyngeal squamous cell sarcoma(on base of tongue).
On 12 Nov 2021, I had the first TORS procedure for theLentsch, who did the procedure, just happened to leave margins that were not clear. When I saw him at post-op appt after coming home, he told me there was cancer left behind.
Aside-->Now, he, most of the Wellin Clinic Oncological ENT Dept along many other cancer specialists in all disciplines at MUSC(as well as most of their staff-NPs, RN, administrative folks), were departing to go to a rival hospital in the Charleston area to start a brand new cancer dept. from scratch. Trident Healthcare Systems offered tons of cash to these doctors, new state-of-the-art equipment, everything to make them seem to be THE premiere cancer center in the entire region!!! The new center was to open on 1 Dec 2021! On 23 Nov, Lentsch informs that the margins were not clear, and he could schedule surgery at Trident for me the following week to remove the remainder of the cancer, easy-peasy. I declined to leave MUSC as I was getting other things done there. Please I realized that the Oncological ENT Dept has failed me in many aspects as I had come to them after beginning cancer treatment somewhere else. This being compared to receiving care at MUSC from diagnosis onward. Lentsch tried multiple times during the appt to get me to move to Trident. His final tidbit to me was that his nurse practitioner(who was cute af, but had plumped out during the pandemic, lol) was coming along with him to Trident, as if that was enough for me to leave with him.
Now, it struck me as dodgy af that he happened to leave some cancer behind, then offered to perform surgery 3 weeks after initial procedure at the new cancer center. Imagine that! Now, I have a nephew who was seeing a MUSC Hollings Cancer Center oncological dermatologist for a lesion on his head. A biopsy had already been done in Oct/Nov 2021 at MUSC which was negative. That doctor was also part of the Trident 'exodus' from MUSC. Around the end of Nov, he notified my nephew that another biopsy was needed, which, if positive would need surgery, all at Trident, of course. My nephew ended up going to a different oncologist, at a different hospital system(Duke University Hospitals). And guess what that doctor said? No need for another biopsy as the lesion was NOT cancerous. The "exodus" folks were sued by MUSC because they had copied the complete files of all their patients! Not sure if the FDA investigated the incident for HIPPA violations or not--they should! To me, it appeared that the MUSC Oncology folks involved in the Trident exodus arranged things so that they would have a huge ready-made patient base awaiting every aspect of cancer care, from simple biopsies to complex surgeries! Imagine that!
On 8 Dec, I met with a new Oncology ENT, Dr Mady, a highly credentialed physician brought in from Boston to fill in as MUSC rebuilt the Wellin Clinic from the ground up staff-wise. She was fricking great!!! I checked her out online and was surprised at the astonishing amount of articles she had published in her career. I knew I was in good hands. Where the clinic had always been a extremely busy and bustling practice, it was now a ghost town! Everyone had left! Staff had been brought over from the Hollings Center to cover. Even today, the clinic has not recovered to the activity level as before, and is still sharing staff with Hollings. Dr. Mady examined me and said that she would present my case to the Tumor Board. The result of that meeting was no surgery and appointments with both radiation and hematological oncology specialists.
On 23 Dec 2021, I had videocalls with both of the specialists. The meeting with radiation did not go well. She wanted to do radiation, which I had been told could not be done again and I ended up with a permanent stoma in my neck. The side effects I had suffered from radiation treatments in 2016 was another reason I did not want radiation again. my answer was no on the radiation.
Hematological oncologist insisted that no more surgery would be performed on me, that a dual approach of chemo and radiation were my only recourse. Now this was a re-irradiation of the neck area. I had the laryngectomy because I was told I was could not have radiation to the neck area again. So here, to my understanding, I'm being told, in a roundabout way, that the laryngectomy could have been avoided if another course of radiation had been done!!! This greatly pissed me off!!! I tell the oncologist that re-irradiation would be impossible due to what several ENTs had told me before, thus why I'm currently and forever will be a lary.
I think word got back to him about my little nickname for him(especially since I told every damned person in the cancer clinic about his wondrous attitude), and he changed from extremely pessimistic to very optimistic. But I relayed a story I remembered as a kid. A guy made a bet that he could stay out on a very cold night on a mountainside without any gear or a fire. The bet was a free huge dinner if he won, reversed if he lost, but he would be feeding a crowd as it was a pub bet type situation. Well, he made it through the night and the guys wanted to know how he managed. He said that in a window of a house, there was a candle burning all night and it gave him solace and kept him from thinking about the frigid night air. His pals immediately started to howl, saying he had "heat" from the candle, so he lost the bet. He accepted the group's decision, and the following evening, he had the group come over for the free banquet he would provide. When it was time to eat, the door to the kitchen was thrown open so the aromas of the delicious food could waft into the dining area, and he said, "enjoy, my friends!" But no food was brought to the table! His pals began to vocally complain, and he said that if looking at a candle flame from a distance counted as warmth, then the smells of the food counted as their free banquet! Now the part I remembered and took with me from childhood onward was the portion of the story where he watched the flame of the candle all night. And how that was enough to provide his mind with the comfort he needed. Totally forgot the kicker of the ending, just the import of what that candle meant. What I relayed to my Palliative Care Specialist was that as long as my care team could let me know that there was even the slimmest chance that I could beat this, then I'd be good. That no matter what, there was a candle somewhere in the distance--a candle of hope. Just give me that "candle", that small glimmer of hope and let my mind to the rest! Why tf wouldn't every oncologist learn to offer even a slight glimmer of hope to their patients? I have personally seen relatives be told that they had cancer and see their own personal light go out. Even when they were offered the chance to fight the good fight, they immediately surrendered to the idea of cancer. They let themselves die before cancer even had a chance to kill them! Fricking amazing to see someone be eaten so quickly by malignancy! So, people, tell the story about the guy staying warm all night by watching a flickering candle flame through a window a far distance away. Teach it as a story of hope and the power of the mind.
Accursed creator! Why did you form a monster so hideous that even you turned from me in disgust? God, in pity, made man beautiful and alluring, after his own image; but my form is a filthy type of yours, more horrid even from the very resemlance. Satan had his companions, fellow-devils, to admire and encourage him; but I am solitary and abhorred.' - Frankenstein”
― Mary Wollstonecraft Shelley, Frankenstein, or The Modern Prometheus
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| May 2022 |
i feel like a truck ran over me, backed up, ran over me again and dragged me to some train tracks, where a Amtrak squished me down a little bit more. i want a shower soooooo bad. i'm sweaty and stinky too “... no one can feel more deeply than he does the beauties of nature. The starry sky, the sea, and every sight afforded by these wonderful regions, seems still to have the power of elevating his soul from earth. Such a man has a double existence: he
may suffer misery, and be overwhelmed by disappointments; yet, when he has retired into himself, he will be like a celestial spirit that has a halo around him, within whose circle no grief or folly ventures.”
― Mary Shelley, Frankenstein
it happens to me all the time when i try to eat. brings tears to my eyes it hurts so bad.
side effect from last surgery, damage to salivary gland and nerves
but it is treatable. exercise and/or botox injections. in negotiations with docs now on firm diagnosis and treatment
You sentbeen on a feeding tube so i really miss eating. want it fixed so i can chow down once i'm allowed to eat!
i have meds. the bite thing is just intense af but only lasts a few seconds, most is maybe 30-45 seconds, so it passes fast
i underwent a 19 hour surgery. then i was kept under sedation for 4 more days. went under on monday morning, woke up and asked the day and was told it was friday afternoon. blew my mind! and i was given so many foreign fluid for over two weeks. in 2018, i was in a hospital for over 4 weeks total getting injections to heal my body.
You sent
since november, i have spent over 5 weeks in hospital, again getting tons of injections, with goal to make me better. in a few weeks, i will get injections of chemo. chemo is poison! but it poisons any cancer cells left in me. i will also be irradiated with deadly radiation, again with goal of killing any cancer cells left. so sometimes poisonous things can heal the body
You sent
there will be side effects from my cancer treatments, but alternative is death. if i had taken these treatments back in january, i would have prevented the two surgeries in feb and May. so by me avoiding the poisous treatments, i got cancer two more times and underwent tremendous surgical trauma to my body and added moe scars to my body
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in order to stay at a really nice place while I have radiation treatments, i need a "caretaker" to stay with me. it would be 6 weeks in Charleston, with weekends on the farm. all the caretaker has to do is be there in case I need someone to call the doctor in middle of night, or call public safety to take me to the ER two blocks away. damn, and you would be perfect for this job, and be a great companion as i undergo radiation and chemo. plus it is in downtown Charleston so so many wonderful things to see during the downtimes when nothing is happening with my treatments, which is 99.99% of time there
no, the caretaker has to be there in person. the place is owned by the american cancer society so they are strict about the rules. they have someone there 24/7 but they are volunteers who mainly man the door and check people in and help with small things. not able to help if there was a medical emergency. the place is across the street from the hospital complex. a block from the cancer. two blocks from the ER and main hospital entrance. extremely convenient...radiation treatments would last 30 minutes each day. chemo is a hour every 3 weeks. immunotherapy is a hour every 3 weeks. but the oncologist said that instead of that place(i stayed there the night before my surgery), they might could rent me a place near the hospital for me to stay alone. i appreciate your willingness to help!!! you're the best!!! I'm so lucky to have someone as fantastic as you in my life. just wish you weren't in okc! lol we have got to get you to the farm!!!
doing okay. start radiation and chemo treatments monday. my second caretaker choice is 'sick' now, first one ghosted me. now will have to use a friend of my son who i don't have much faith in. not sure how good a guy who is a stoner gamer will react to a sick man who will be sleeping and out of it much of the time.
Had to get rid of the guy who came as my caretaker. On 25th, I got my pain meds refilled(120--10mg oxycodones). Thursday evening, I thought the bottle seemed light. Friday morning, I counted them and had 31 pills! Confronted the caretaker. at first he denied it, then later confessed. The fucker had been stealing my pain meds and other medications since we arrived in Charleston!!! So I am without a caretaker now. Place says I can stay without one. You mentioned in one of your messages that you would be homeless soon. You are welcome to come to the farm. I know you have wanted to do this for some time. You will get a place to stay and 3 meals a day. We expect 5 hours each day(9am-noon, 1-3pm), Mon-Sat. No vax needed. My son is managing things in my absence. I'll be back around the end of August. So let me know if staying on the farm is something you would now be interested in doing.
Had my first two treatments today with no ill effects. My first weekly chemo took 3 hours.
My first daily radiation therapy took under 10 minutes total time. Actual radiation only lasted 1 minute!!!
When I had radiation therapy in 2016, it lasted 15 minutes. The less radiation the better!
My treatment is going well
Radiation therapy takes under 10 minutes. Radiation is exactly 1 minute long.
Chemo takes 3 hours but 1 hour is hydration, 1 hour is medication and supplements, then 1 hour of chemo drugs. So far, no ill effects.
My SLP has had me talk to a few people pre-lary to put their mind at ease.
She says that my vocalization is excellent so she has had me talk with the head and neck oncology floor nursing staff. The staff never really get to see patients who are speaking, Only those fresh from lary surgery. So I'm a teaching tool, per se.
Though atm I sound like crap. Still healing from last radiation. My puncture is still a bit wonky.
I've had radiation twice. 2016 when first sarcoma was found. but all it did was cause a year of fricking intense pain and masked my cancer. when radiation cleared up, doc ordered another biopsy and cancer was detected so lary was next option in Jan '18. Developed fistula & had pectoral flap procedure in Feb '18. All good after that. Then Sept '21, felt like I had reflux 24/7. Begged for a scope to check things out, and finally my SLP did one and found a mass on base of tongue in throat. Biopsy said it was squamous cell sarcoma. Had a TORS procedure in Nov, Margins came back bad. Had another TORS in Feb, all cancer gone. Had DNA blood test in Apr, positive. Biopsy confirmed. A new sarcoma grew back in same spot, to same size as first. Grew another 50% by surgery in May. Bilateral neck dissection with latissimus dorsi flap. Week in induced coma ICU, at least 3 pulmonary arrests, week in h & n oncology wing, then home. Six weeks of chemo and radiation in Aug/Sept. Chemo was a breeze, radiation was 1 minute a day for 4 weeks, then 45 secs for 2 weeks.
all good now except for multiple aftereffects from both rounds of rad
i'm tired of starting to eat something and having stabbing pain to hit. then having to medicate and having to wait for it to hit me so i can eat. i'm tired of my food getting cold every time i eat be cause it takes so damned long to get it down. i'm tired of living on nutrition drinks and ice cream as they are cold and go down easily most of the time
The procedure brought my esophagus from 0.5cm to 1cm. so from 1/4" to 1/2". to put it in perspective. before regular vegetable soup pieces of veggies would get stuck. now chucky soup pieces get stuck, normal veggie soup pieces might not get stuck. ever eat butter pecan ice cream? the pecan pieces stick now. a cashew piece sticks. a centimeter is still small af
but i figure if each procedure can double the size, and i think 5cm is the goal--2" is normal, reconstructive surgeon said she rebuilt it to 9cm. so double each time. so 1cm -> 2cm, then 2cm->4cm, then 4cm->8cm. or it might only increase 1/2 cm each time. then many more procedures to get to "normal"
if food is really hot, and it sticks, then it will burn tf out of my throat, in the spot above the constriction
when there is a blockage, sometimes i need to go outside and massage my throat to get it out and everything above it. so everything i've chewed after the block happens. the cats love it. if i'm at a restaurant, i run to the can and clear the blockage into the toilet, feel like a bulimic
omg, not long after my lary, when i still had drains in, someone brought some acid over and wanted to know if i wanted to trip!!! i would have pulled every line out of me if i had. done soooooo many psychedelics in my life, but not sure if i would now with a hole in my neck.
well, i'm eating the same things as before, which was everything if i tried. it's just that i can swallow things which are a little larger and not chewed to a disgusting mush. did you ever hear the old adage that one should chew everything 32-4 times before swallowing? something like a chew for each tooth? i think it was for proper digestion. but if one chews to that number, it would encourage weight loss and other things. when chewing so much, it becomes an unpleasant mass. lol but, smaller bites means less chewing, so not as unpleasant. but it's better than it was. still eating lots of ice cream, but a steak and veg each day too
After my TORS procedure last Feb, i was on "normal" food my last two days in hospital. it was a "lary" diet. as all my previous stays had been "nothing by mouth", I had never had "real" food before in the hospital setting. i was surprised at how small they had cut up my food!!! like around 1/4" squares!!! something no one had ever told me before. so just cutting up food into tiny pieces made a gigantic difference in eating. i had had the occasional sticking of food prior to this. i used to joke about my "pelican pouch" that was my oropharynx area post-lary. it was funny how things would stick and it might be a couple of hours to realize it! lol. but last surgery made esophagus so small it was ridiculous. luckily, i learned to block stoma and blow to unclog the pipes. lol worked great unless i had a prosthesis plug in place to stop a leaky TEP then i was basically fucked when trying to eat and drink at same time. lol
i have no pain from things sticking, probably no nerves left connected in that area anymore. i've used nystatin solution as a rinse/swallow, & to use on brush to clean valve. plus mycelex troche/tablets that i use 3-4x day--these are allowed to dissolve in mouth to coat esophogeal side of valve. both are anti-fungal. I have even been given several courses of systemic anti-fungals. told my SLP that i was abducted by aliens and had my DNA spliced with a steakhouse yeast roll. when leaks start, then i will get really aggressive with cleaning, adding peroxide to the brush when cleaning, plus all of the above methods. but my body is prefect biome for biofilm. maybe my wittiness has something to do with it--i've always been a fun guy! lol but not all leaks have been from fungal growth. a few times, i've inadvertently pulled hairs from my esophagus through the valve, which kept it from seating properly. btw, the esophageal hair is from the pectoral flap fistula repair. a strip of chest skin was taken along with the pectoral muscle. and the chest skin strip was used to repair the esophagus section of the fistula. so now i have 2 1/2-3" chest hairs growing in the area opposite & below to the speech valve. my SLP thought i was joking about getting hair caught as when she scoped me and found the mass on my tongue, she was entranced by my hairy esophagus!!! lol even snapped a few pics of it for my chart(and probably to share with future students lol) when a hair is through the valve, i have to skillfully take tweezers, get a firm grip on it, and pluck it out. it hurts like a mofo to do so! have tired apple cider vinegar as some in the fb lary groups espouse, but not seen any difference using it. never heard of the biotene trick. my main SLP is in her late 60s and she has offered several tricks, but biotene is a new one too. but biotene is a mouth rinse, not to be swallowed. so how do you get it onto the surface of the valve?or is the brush dipped in it and applied that way?
night owl. but after lary, i have chronic insomnia. have taken sleep meds for it most of time, but since surgery, i have first bite syndrome. wouldn't wish on my enemies, but on my worst enemies, i would. imagine a red hot electric ice pick being driven into your jaw, into parotid salivary gland, and twisted whenever something makes your mouth water, or whenever you eat. it stops after you have taken a few bites. it returns if you stop eating for a few minutes, say if you are chatting.
so to combat it, i have been on 10mg of oxycodone since i started eating normal food, mid-august. with the oxy, i cannot take best sleep inducers. so my sleep cycle is fucked. might sleep hard for 2 hours, then wide awake for hour, then sleep light for 30 mins at a time. lucky to sleep 3 hours a night. after lary, went 6 months on 2 hours of sleep a night before doc put me on sleep meds. now, cannot eat unless medicated pain. so not sleeping again.
some days i do fine without sleep. today, oxy has had me noddy half of day.
i wore something around neck and a mask during most of first year of pandemic. was so glad to get vax. but the idiots who went maskless, oy vey! within a week of coming home after lary surgery, i stopped using tissue and started carrying around washcloths, tissue would break apart from mucus amount from one cough. and a few times i sucked in some tissue into trachea. won't deny that here on farm that i've let mucus rockets fly through the air. a handkerchief was too thin for amount of mucus too
the initial tube was a 10/55 which would tickle my trachea too. finally settled on a 10/27 which was prefect. tried a button, but stoma is shaped correctly to hold it in without strap. with strap, it hit the prosthesis wrong when talking so 10/27
because i had radiation before lary, i was lucky to develop a fantastic fistula above my stoma that grew and grew. my neck dissection for the laryngectomy failed to heal internally. it was like a zipper busting and unzipping inside my throat. in 6 wks it was almost twice as big as my stoma. so i got the pectoral flap repair. so i lost my left pectoral muscle, a nice big ass scar, and much of the use of my left arm. due to the pec going under the skin and over the collar bone, then above the stoma, the pec would cause occlusion of stoma without the larytube. and why i fought to try every possible size to find one that didn't irritate me
for past 5 yrs, i wore a lary tube 24/7 due to pec flap occluding stoma if i barely tilted my head. two nites ago, left tube in bathroom after cleaning prosthesis. discovered that 1-tube pushing against prosthesis was causing leaking, & 2-last surgery with latissimus dorsi reconstruction changed stoma shape resulting a-lower holes in tubes for speaking, b-no need for tube as neck shape evened out so pec flap no longer an issue. so for two days, i've been naked! bare stoma! and i'm someone whose never worn HMEs, except at beginning. was going through over a dozen a day due to coughing and filling them with mucus, and the fact that they would continually "stick". i mean i would talk and the damned thing would get stuck in closed position. meaning i could not breathe at all!!! then i would be in panic mode trying to pop the damned thing out before i suffocated. so no more HME for me. now i spent 80% of time outside in the humid and buggy air. only once last year, when gnats were horrible, did i ever have anything get caught in my tube and that was a single gnat. so i'll see how things will be this coming summer.
any time i've done anything lary-wise has been when i go for TEP changes, or when i was at MUSC for 6 weeks for treatments in Aug/Sep. I live 2 1/2 hrs from MUSC so it's not that often that i'm there if i can help it
get enough lary community here on fb, so going to conference is not something i would do. nor go to the ATOS meetings they have often. here on fb, the pity party folks are bad enough, wouldn't want to be stuck for a week or weekend with them. lol jeez, they irk the shit out of me sometimes, especially the "I will never speak again" or I will never use a prosthesis, only a electrolarynx", or "I let my puncture close and make my family wait on me hand and foot because I was an asshole prior to being a lary and i shall remain one". jeez, get a grip! why have life-saving surgery if you are giving up on life as soon as you have it??? lol but i will write a huge comment telling those folks to get their head out of their asses and LIVE! you may have seen one of them in the past. wrote one when i was in the hospital in May. Also posted a crapload of disgusting pics from surgery showing progress of healing so folks wary of surgery would realize how fast things go back to normal.
China is full of larys. i've hosted over 70+ chinese and after getting throat cancer, so many of the folks from there have a father/grandfather who had throat cancer then a lary
japan has larys too, heavy drinking and smoking corporate culture causes cancer
no need to remind me of anything. we all need to give ourselves extra TLC on occasion. only during this past 6-9 months have i tried to relax and actually not do anything at all. went full-swing even during the pandemic, no breaks really of any kind for last 12 years. sleeping late is somethin i never did, nor just staying inside and not going outside all day. felt odd at first, then i realized that i was like a raw wire arcing all day and night. nice to sleep through the night, even if medicated.
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i read a book by a brit naturalist/biologist who was also an animal behaviorist. 'the naked ape' by desmond morris. he also did 'the human zoo" about human behavior as a group.
as an aspie, the book made understanding people so easy because he looked at humans from a behavior standpoint and most of what we do is instinctual.
and it wasn't until i was 42 that i received a diagnosis of Asperger's, so add life as atypical on top of it all, and you might get a glimpse of what it was like for me, emotionally and mentally. after my diagnosis, i asked Linds how she felt to have taken advantage of a developmentally disabled man when we first met. lol we had a good laugh about that. and she had a better understanding of me and how i was when we were married, meaning my mannerisms, my habits, my shutting down when over-stimmed, etc
Two of my sons were diagnosed with Asperger's.
I was in a gifted program. The first year the teacher was wonderful and all students in the program really enjoyed being in it. Then they hired a teacher who was literally intimidated by us. The program was awful and no one wanted to be taken out of normal classes in order to go to the gifted classes. She had no clue how to engage with us, nor how to keep us mentally stimulated. By 7th grade, many parents opted out of the program for their kids. Mine didn't. btw, we were taken out of our regular classes for a hour 3 days a week for the gifted program. In 8th grade, I missed math class 3 days a week to go to gifted classes. This resulted in me missing pre-algebra and left me woefully ill-prepared for high school algebra.
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I'm into rocks And used to make jewelry. Do you know Black Market Minerals? That is the retail outlet for a company out of Kissimmee that deals with gemstones, rocks, fossils, etc.
Wow, you got a ton written in a short time--must be on your cell phone. And we have a lot in common! I cared for my mom who had Alzheimer's for a bit. Left Michigan to come back to the family farm to care for her and deal with the farm. Two of my sons were diagnosed with Asperger's.
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My degree was in Biology as that was what my small liberal arts S. Baptist University offered. Studied entomology as continuing education courses as an environmental health specialist. Took tons of courses dealing with public health issues.
My son whose house burned is one of the ones on the spectrum, so that makes it difficult to a nth degree. Especially with him making a plan to take the necessary steps to make a long-term plan to get it restored.
We are like-minded. Have chatted with a few lary folks over the last few years. But it seems that many were trumpster divers. lol Stayed at Hope Lodge in Aug/Sept and tried to get the staff to put a parental block on FauxNews on the common area TV. Made them rofl, but they wouldn't do it.
I never got a master's. FB doesn't let you show work without assuming a degree was earned. Did graduate work in Public Health, Sports Medicine, Cellular Biology, Education, and Entomology. Life took me away from coursework. Then realized I didn't need a piece of paper to prove my knowledge. With life on the spectrum, I intensely study subjects for a few years, with topics overlapping each other, reading everything possible on a topic. With the internet, I can gather all the books written on a subject for a thorough review of something. Have in the neighborhood of 12-3K books. lol It's not hoarding if it is books!
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btw, when contacted by a scammer, chat for a while, then type "alaye". It is Yoruba for 'scammer" and will make the scammer laugh and think you are one too. Like you, I enjoy trolling scammers(and trumpers)
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I am with you 100% on that. It is so easy to screw with them. I started going on confederate pages and posting about how the US Army kicked ass and end the comment with USA! USA! USA! and you could see heads spin because the rebel lovers are racist trumpers too, so trying to defend the rebs conflicts with their ultra-patriotism. The smoke from the sawdust smoldering in their heads was visible online
or using multi-syllable words while trolling right-wingers
or asking trumpsters about immigrants when so many have Asian or Eastern European wives. Love making the snowflakes melt when they realize a libtard can fight back. bwah ha ha ha ha
I stopped at a country store in the area in 2019 for a quick pit stop and there was a lary, old dude with a magat hat doing scratch offs and cussing up a storm. Didn't say anything to him because I was in a hurry and magat.
Another time, I took the farm volunteers to a laundromat and met an older lady who was a lary. We chatted for a while.
Growing up the man who leased our farm had a brother who was a lary. So I knew him most of my childhood and teen years.
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Had a niece who lived in Lakeland for years. A sister in Apopka. A slew of Cousins in Jax area.
And I loved going to Venice for the fossils and shark teeth. Tourists snagged the shark teeth but ignored all the fossilized whale bone, turtle shell, skate plates, etc.
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majority of what I've read are non-fict. though in last few years, i got into graphic novels. started reading with comics so seems fitting to get into them again. have huge collection of too reads. most casual reading of news and such is online, book reading is at bedtime. meds make it tough to read as some nights i have insomnia, others nod off within ten mins of hitting pillow.
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my son is a computer whiz. was an anonymous member involved in DOS attacks after wikileaks diplomatic docs drop in 2010--that got his mom's house raided by FBI and all electronics taken. But my ex has uncle who was a read admiral and aunt who was counsel for NCIS so no charges for him from that escapade. but he learned value of books when he was here for first hurricane of his life. he was surfing net and power went out. asked what to do, and i handed him a book and said "read!". so he values my collection as I am very prepared if grid goes down as I have reference books for almost everything. lol
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international trips are cool. saw you are planning a trip to japan soon. my travels have been limited to hosting international folks on my farm. have hosted folks from 53 countries . 30+ from Japan so you are in for a treat when you go. I hope to go back to the UK in late spring/early summer, if i can get big enough gap in appts and get esophagus dilated enough to eat somewhat normally again. shrunk to 0.5cm after May surgery. dilation in Dec got it to 1cm. having another dilation on 30th, so maybe 2 cm after that one.
When i moved back to my hometown, i think i raised the average IQ by 50 points. lol a friend started calling me nikipedia and another said asking me a question was faster than using google. lol has a huge vocabulary and has won numerous poetry awards which attest to his ability to act as a thesaurus. which led to people referring to him as the word man when younger
MUSC in Charleston, SC, I live about 35 miles due north of Myrtle Beach, SC, literally on the NC/SC border
I had a spinal cord tumor about 15 years ago and went to MUSC for the surgery, so that has been my go-to hospital. plus it is largest medical center closest to me. for NC hospitals, I would have to drive 3.5-4.5 hours away
i intimidated teachers. for years, they would never call on my. my mom told me, when I was in my 30s, that teachers told her that if they called on me, i would never answer the question. i would tell her everything i knew on the subject and she couldn't break in once i started. i was always in the principal's office for disrupting class. lol easy way to get rid of me for a hour or so. was in gifted program, which was another way to get smart kids out of the classes.
understand completely about healthcare. had a gf who had back pain. docs acted like she was drug seeking. it was perforated ulcer. delayed treating her--no ins--and it ate into her liver, pancreas, etc. in 3 years, over $5 mill in bills. i have Medicare now, last year i hit $1 mill in June for billable procedures
and i have friends in UK who are fricking shocked at US medical care. especially when i screenshot a bill and post it. if someone they know goes on about privatizing UK health system, i post a screenshot or two and they think it is a joke
i feel ya, Alzheimer's is hell on the patient and more so on family. you watch the person who raised you slowly die, but their body is still their interacting with you and it can become pure torment
i write as i talk, tons of info given, can overwhelm a person when i talk. when i had the electrolarynx, my SLP told me to pace myself and breathe every few words. i was like i can talk without breathing at all this is fricking great!!!!! even now i will forget to breathe when talking and get light-headed af
rather than spend the money to give a proper education to the bright ones, let's just stick them away. when i taught in late 80s, they had started drugging the smart ones. the kid who had his hand up all morning would take his pill and not another peep out of him. sad af that has happened
after moving back to hometown, i realized i had nothing in common with these people. lol had lived in a university town for the previous 10 years so always had great convos and coffee houses for socializing. here it's redneck bars with 5 alcoholics and church. neither were things i need in life lol having the farm thing with the volunteers coming to learn organic methods and permaculture gave me purpose and the intellectual stim i needed.
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understand. in Winslow, AZ, had the absolute best green chili from this tiny ass grill in a tinier one man teeny camper parked in side of dirt parking lot on a back street. thought it was dodgy af and thought "food poisoning" as soon as we pulled up, but OMG, so good. had a container of it drop on filthy van carpet and i was scooping it up with a spoon and eating tf out of it!!!----------------------------------------------------------------------------------------------------------------------------------
kazoo had its share of interesting characters. i imagine many university kids saw me as one of them at the various coffee houses i frequented. just some kazoo housed mental guy, would have been homeless any where other than michigan which had fantastic community mental health services
GIs in vietnam referred to uncle sam as uncle sugar due to all the shit the govt wasted overthere.uncle sugar is the dude who runs the country. wears stars & stripes motif clothing. used to stand outside the rickman house in the zoo and wave at everybody
don't you remember the old Uncle Sam dude in full costume who lived in the Kzoo Rickman Hotel/home for the ex-mental patients
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