GoFundMe campaign and updates

 Hey everyone,

Here at Prince Bay Farm in NC, it's Nick Prince, with some news to share.

As many of you know, I host volunteers and guests from all over the world. https://www.facebook.com/princebayfarm/

The farm has hosted over 500 folks from 52 countries in the last eleven years. They are taught about sustainability, organic farming practices, self-sufficiency & many life lessons. I also share knowledge, culture, history, food and my home with them. I'm full of stories--childhood, farm life, university years, military service, government work, hippie days, traveling tales, my kids--Justin, Dominique, Nicholas & Oliver, family, friends, history, and all the stuff crammed in my head--all shared with my guests. I've never met a question I didn't like and have been referred to as 'Nikipedia."

In communicating with the wonderful folks who have visited the farm, I noticed that my voice was becoming strained too often. In the spring of 2016, I decided to see the doctor. As anyone who knows me, the diagnosis was that I talk too much--a bowed vocal cord from over-use.

But two months later, during a follow-up visit, the doctor noticed a tiny spot on my vocal cords. A biopsy revealed it to be a stage one supraglottic squamous cell cancer. Doc said we were lucky to have found it so soon. I also lost my eldest son, Justin, the week before I received the biopsy results. My doctor said the sarcoma would be easy to treat with seven weeks of radiation treatments.

It appeared that the radiation treatments were a success. But the following year brought constant pain and many visits to the doctor. A second and third opinion was sought. Another biopsy was performed in November 2017. The biopsy results showed the sarcoma was back!

A total laryngectomy was performed on 2 January 2018.

An esophagocutaneous fistula developed a short time after the laryngectomy. The tissues failed to heal due to the changes caused by radiation therapy. The fistula necessitated a pectoral flap repair which restricted the use of my left arm.

I learned to speak again! First, I used an electrolarynx, sounding a lot like Darth Vader. Then, I mastered using a vocal prosthesis and now speak solely with it. I talk almost as much as I did before the laryngectomy. And I've continued to host guests and teach as before.

Learning to live as a laryngectomee was challenging. And I mastered it! There were many side effects from the radiation treatments that I learned to live with.

In late summer last year, I noticed a burning in my throat, similar to acid reflux. At first, I was told that it was reflux. This diagnosis didn't seem right, as I've dealt with reflux for many years now. Being persistent, I finally got my care team to order an endoscopy of my throat.

My speech pathologist found an abnormal growth on the base of my tongue, and the C-word was mentioned. I received a referral for a biopsy. The biopsy revealed I had a new oropharyngeal squamous cell sarcoma!

Surgery in November: margins not clear after a one-hour surgery to remove the sarcoma. My surgeon was leaving MUSC for a new hospital. Scheduling another procedure for the excision of the remaining sarcoma was his first response.

The tumor board recommended radiotherapy, immunotherapy, and chemotherapy, instead of additional surgery. Consultation with the hospital patient advocate resulted in surgery being scheduled to remove remnants of the sarcoma.

Surgery in February: complete removal of sarcoma, all margins clear.

March brought a diagnostic blood test whose purpose was to detect the presence of cancer DNA. The test was positive. CT scans were ordered.

A new sarcoma was found in the exact location as the previous one. It had grown to nearly the same size as before in under two months.

Now I am looking at another surgery, immunotherapy, and another round of radiation.

I have also applied to participate in a clinical trial to treat my cancer with cryogenic therapy and several immunotherapy regimes. I'm told I am a good candidate for the program. The clinical trial is at MUSC. If approved to participate, I would stay in Charleston for the six weeks of treatment. The clinical study will begin in mid-August.

The expenses associated with my various treatments are difficult for me to cover. They add up fast, especially with the cost of fuel today. Thus, I have launched this GoFundMe appeal to assist with expenses not covered by medical insurance.

Treatment regimes are still being planned, so I am still unclear on the scope of my medical care. Appointments with ENTs, surgeons, oncologists, radiation techs, dentists, palliative care, and immunotherapists are on schedule for the next few weeks.

Tests, scans, supplements, medications, and the list keeps growing, and the bills are piling up. I have my son, Nicholas, and a few volunteers here to keep everything on the farm rolling smoothly, as my activities have been severely restricted due to treatments.

All donations will be greatly appreciated!

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Received a date for my surgery date. Sarcoma removal via neck dissection, with neck reconstruction using latissimus dorsi transfer, will occur on 16 May! No worries as I have undergone two previous neck dissections. First one was for my laryngectomy. Second one for the fistula repair using my left pectoralis major. If you want a glimpse at representative surgeries similar to mine, here's some youtube videos showing the procedures! A neck dissection: https://youtu.be/TdKQ22w70t0 A latissimus dorsi transfer: https://youtu.be/-9rB4Te67UY A fistula repair using the pectoralis major: https://youtu.be/fsV6llOpZNg

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In case you're wondering what will occur during my surgery on 16 May, here is a list of the procedures: Monday May 16, 2022 ADJACENT TISSUE TRANSFER OR REARRANGEMENT, ANY AREA; DEFECT 30.1 SQ CM TO 60.0 SQ CM Performed by Judith M. Skoner, MD FREE SKIN FLAP, WITH MICROVASCULAR ANASTOMOSIS Performed by Judith M. Skoner, MD COMPOSITE GLOSSECTOMY WITH RADICAL NECK DISSECTION Performed by GREER ALBERGOTTI, MD PARTIAL REMOVAL OF PHARYNX Performed by GREER ALBERGOTTI, MD PHARYNGOPLASTY Performed by Judith M. Skoner, MD EGD WITH PERC PEG PLACEMENT Performed by Stuart M. Leon, MD RADICAL RESECTION TONSIL W/O CLOSURE Performed by GREER ALBERGOTTI, MD ADJACENT TISSUE TRANSFER OR REARRANGEMENT, ANY AREA, EACH ADDITIONAL 30.0 SQ CM, OR PART THEREOF Performed by Judith M. Skoner, MD

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Update: Found out today that I was NOT approved for the clinical trial in Rochester, MI. Since my cancer is still localized, I do not meet the criteria for the trial. There are some clinical trials ongoing at MUSC whose qualifications I may meet in order to be a participant. I will keep everyone informed as I learn more.

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The hospital was gracious enough to offer a prepay option with a breakdown of total costs involved in just my upcoming surgical procedures on the 16th! Seems I was off slightly when guessing how much I would need when I started this fund-raising campaign. There is still radiation therapy of roughly seven weeks of daily treatments plus immunotherapy, and the transportation for all these things to consider.

Reference #694946

Deductible--$1,556 Copay--$389 20% Coinsurance--$16,966 You Pay--$18,911 Details--Estimated Fees--$518,190 Low--$419,707 High--$702,870 Hospital Fees--$344,190 Physician Fees--$174,000 Total Fees--$518,190 Insurance Covers--$499,279

You Pay$18,911

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UPDATE;

Surgery 16 May. They gave me something to relax around 7AM as they were ready to wheel me back to the OR.  Surgeons finished with surgery around 230AM, Tuesday.  

When I awakened, there was an immense amount of pain in my neck and back as to be expected.  Something seemed off.  I finally asked and found out it was Friday, 20 May!

There were a few complications from anaesthesia.  A respiratory therapist told me, "when I walked in you had already turned blue, but we got you back."  This happened several times so a planned two day ICU stay became a stay of nearly five days.  Along with a collapsed lung, and pulmonary edema, my body had some issues with the tracheal intubation method used.  It was determined that I needed even more specialized care.

I spent another four days in the Surgical Trauma Intensive Care Unit (STICU).  On Monday, 23 May, I finally passed through the doors of 7 West, MUSC's Head and Neck Cancer wing. This is my fifth stay with the wonderful staff of 7 West.

They cared for me after my laryngectomy when my original squamous cell sarcoma recurred in Jan '18. And after my fistula repair using my pectoral flap in Feb '18.  And for the two TORS procedures for the oropharyngeal squamous cell sarcoma in November '21 and February '22.

Nice to see so many familiar faces and to know I'm in good hands!!!  Will be here at least through the holiday weekend.

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Update: Going home tomorrow, 31 May!! Surgery did get all of the cancer. Flap is healing nicely and swelling is going down swiftly. Will find out at surgical follow-up visit when re-irradiation treatments and immunotherapy begins.

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31 May--Came home. Amazing how good you can feel in hospital, especially as you have been improving for two weeks. Then not even ten minutes after leaving, feel like you have been turned inside out, with no energy and no way to find any. Came home with one drain at back muscle donor site, a PEG tube(starving for real food), a huge bag of medications, a book of care instructions. Still awaiting home health care people to email me. Have gotten a few phone calls but am completely non-verbal for a few weeks, so cannot talk on phone at all. Same shit happened in 2018. smdh BTW, lary are like unicorns. Most have heard of them, sightings are extremely rare. When found, no one knows what to do with them. 9 June--Trip to Charleston to see surgeons for post-op examinations. 13 June--Meet radiation & immunotherapy oncologists to discuss the next course of treatments.

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Well, in past two weeks, I have met with my reconstructive surgeon and the oncology team. It will take several months for the muscle transplant on my neck to shrink and stop oozing fluids. It is healing well and shrinking as it should. May be 3-6 months before the lump on the right side of my neck is no longer noticeable. BTW, I truly love my reconstructive surgeon! She took time this week to personally call to give me the results of a swallow study(I failed) and to let me know what to do as concerning my care. She did my pectoral flap fistula repair in 2018. Dr. Skoner rocks! BTW, I have a small leak in the surgical area, so another two weeks tube feeding and being nonverbal for the same period of time. I find I'm tired a lot. Immense surgical trauma as I went through takes a hell of a lot out of you. When I read through the care notes from my hospital stay, it is amazing what I went through for the week plus that I was in ICU/STICU. Visualized, it's like watching an episode of ER or Grey's Anatomy. Even had the Ambu bag used to restore my breathing when I 'crashed'. Reading some of it is scary af when you realize it is you that they are talking about as subject with no identity other than patient. If you would like to read about some of that experience, here is my blog post containing some of those notes: https://nicholaslprinceravings.blogspot.com/2022/05/my-cancer-battle.html Now I will admit that some of my Oncology team are not my favorite people. One is a statistics person who will say flat out, "you have x years left to live." No glimmer of hope with this guy, whom I refer to in m mind and out loud at times as 'Dr. Death.' Two days before Christmas, he told me that because I had doubts about his treatment plan, that I only had 1-3 years left to live. That was a helluva Christmas present, to say the least. I did find out this week that I'm eligible for a new study, which means free medications.(Look up the cost of a month's supply of Keytruda and you will see why this study is a good thing.) There are three arms to this study: Arm 1. radiation, chemo, immunotherapy; Arm 2. radiation, immunotherapy; Arm 3. immunotherapy. I will discover in next two week which arm of treatment I will be given. If I am picked for one of the two arms which have radiation therapy, then I will be staying in Charleston for the six weeks for treatment. Will update again when I have more news about which treatment I will be having.

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Approval for the clinical trial finally came through. Treatment arm assignment is six weeks of radiation treatments with weekly chemo alongside it. The chemotherapy drug is cisplatin which has less side effects than traditional chemo drugs. The radiation is a narrow field so there is less chance for damage to adjacent area from the radiation treatment. To tell you the truth, I dread them both! Had a horrible time with radiation in 2018--loss of taste, severe fatigue, radiation burns on skin, extreme pain, weight loss, and more. The after-effects were never revealed at the time, to be discovered later--radiation fibrosis, teeth wrecked, the fistula after my laryngectomy, trismus, mandible necrosis, and new things that pop up as time progresses. With chemo, i rarely eat before late afternoon, so the nausea and vomiting might not be much of an issue for me. First treatments are scheduled to begin on 18 July.

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The most wonderful thing about dealing with cancer and its treatment are the strange side effects that pop up. My previous radiation treatments resulted in a group of side effects like a esophagocutaneous fistula, mandible necrosis, trismus, radiation fibrosis, extreme dental caries, etc. With new things pooping up randomly and with out warning. And now a new round of radiation is going to begin on 18 July so there will probably be more things to make life more interesting for me. A new symptom has popped up since my latest surgery: "first bite syndrome." Imagine that on occasion(and you never know when or if it will happen) when taking a bite, you get the most excruciating pain imaginable in your jaw! A pain that can bring you to your knees, tears to your eyes, and make your brain feel as if it is shattering, with shards of razor sharp glass penetrating deep into the jaw and surrounding tissues. The worst thing is that you never know what will trigger this pain. Yaaaay(extreme sarcasm here)!!!!! https://www.oncolink.org/cancers/head-and-neck/side-effect-management-support-resources/first-bite-syndrome

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Update time, folks!: If you haven't helped out with a donation yet, or you want to help again, you may forgo the fees taken by GoFundMe by using PayPal: paypal.me/princebayfarm Payments through both Venmo and Zelle are also available! This weekend marks the halfway point in my cancer treatments! Three weeks completed, three weeks to go. On Tuesday of the past week, I was having a snack and a portion of a molar on the bottom left came out. This is precisely the same spot that rubs against an ulcerated area on the underside of my tongue. The remaining jagged tooth seemed like it was digging into the sorest portion of my tongue anytime I did anything, from eating, talking, drinking, basically anything that caused my tongue to move. Since I'm in the middle of radiation treatments, I had to get permission from my oncologist to see a dentist for corrective measures. I was able to get an appointment at the Dental College to be seen on Friday. Now, last summer and autumn, I had to have extensive dental work done to repair damage resulting from my previous round of radiation back in 2106. Two root canals and extensive restoration work on the majority of my teeth cost nearly $3500. This work wasn't completed due to the discovery of the oropharyngeal sarcoma in October. Friday they were able to place a temporary crown almost within the confines of my appointment time,(I was only 30 minutes late for my IV infusion). The temporary crown cost $350 and the new crown will be $750. Going to try and get the previous work completed in the remaining three weeks that I am here. Thank goodness I am able to get the work done here at the Dental College at a much reduced rate. So far, chemo side effects have been mostly nonexistent. A couple of days I've had bad nausea, but that's it(so far). And, because I've been jabbed, stabbed, poked, & prodded so many times, It has been hard for them to fine a suitable vein to put in the chemo IV line. This past Monday, it took seven attempts and use of an ultrasound to finally get an adequate vein. My arms have been black and blue all week as a result. I have been dehydrated a bit and each week I've had to go back for an infusion of just IV fluids on either Thursday or Friday. Radiation has burned my neck. Looks dark red and feels raw & burnt. Imagine a bad sunburn X10. Some of my beard is starting to fall out. Throat is like raw glass when I swallow if I do not take my pain meds. Have some ulcerated areas on bottom left side of tongue too. This rubs against my teeth so is a constant source of irritation. I can no longer taste anything that is salty, which means my sense of taste is going away as well. This happened in 2016 during radiation treatments then as well. I lost salt, then sour, then sweet. They came back in the same order within a few months. Prior to radiation, they tell you to bulk up weight-wise, and it is because of this loss of the taste buds. Without the sense of taste, all you experience with eating is the texture of food. And many times, you can see and smell your favorite things, then take a bite, and almost instantly spit it out as it is completely gross to you. Food without taste is just a textured goo that cannot be eaten. It's like biting into cardboard, rubber, or Styrofoam except those have some taste. It gets to the point that you will stop eating. In 2016, I could slightly taste vanilla nutrition shakes and those kept me alive for the final half of treatments. This time, I still have the PEG feeding tube, so I can feed myself the nutrition shakes and protein supplements to maintain my weight. But I did gain 50lbs(160lbs to 210lbs) after my feeding tube was removed in 2018, so if I can get my weight to 175-180lbs, I will be a happy camper!!! Surgery has left me with a narrowed esophagus, so eating a small meal can take at least a hour on a good day. This is something I hope to get rectified while still at MUSC. Went home last weekend and, due to me driving, I went without meds both Saturday and Sunday mornings. I had thought things were going too easily with no real side-effects. Without meds in my system, reality hit hard. Realized that the pain meds were very efficient in masking the painful side effects of my treatments. When serum levels dropped, the pain jumped out front and galloped through both days in horrific splendor! First Bite Syndrome was there to remind me that oxycodone has been a most excellent friend to me! Speaking of oxycodone: As many know from my social media posts, in order to stay at Hope Lodge here in Charleston, I was required to have a caretaker. My first two primary choices didn't work out. Out of desperation, I brought along an acquaintance of my son who had been helping on the farm since mid-spring. On Monday, 25 July, I got my pain meds refilled(120 tablets of 10mg oxycodone). Thursday evening, I thought the bottle seemed light. Friday morning, I counted them and had 31 pills! Went to get my caretaker & had him count the tablets. As he did, he hands were shaking like he had severe Parkinson's(ya think he was feeling guilty?). Confronted him about the missing pills and he denied it. Told him I was going to file a police report(in order to get the meds replaced) and notify the residence's administration that a theft had occurred. Administration was upset about the situation, said he could not stay any longer and contacted the police for me. When I returned to the room, he confessed and said he had eaten all 90 of the pills. If this was true, he would have died of an overdose. So he either sold them, or tried to sell them and got ripped off. Knowing him, he most likely got ripped off. Police came, I made the report. In the meantime, he had disappeared. Later, I went through his bag and found an assortment of my medications throughout its compartments. The fucker had been stealing my pain meds and other medications since we arrived in Charleston!!! Didn't leave my room until the next morning when I was ready to drive back to the farm. He spent the night in a chair in a small sitting room. I did let him know what I thought of someone who would steal medication from a cancer patient! Under the circumstances, I'm now allowed to stay at the residence without a caretaker, which suits me just fine! When I returned to Charleston, I brought with me some assorted jams and pickled banana peppers made on the farm. Gifted most to the residence and some to the various clinics and care providers, nurses, and so forth, that have taken such good care of me during all of my surgeries and cancer treatments here at MUSC!

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Week four of chemo and radiation treatments is completed, two weeks left. Donations are still being sought! You can give here, or contact me for PayPal, Zelle, or Venmo info to forgo fees. Radiation has caused a portion of my beard to fall out. Some skin peeling from radiation burns. Speech valve is leaking again. No replacement in my size is available. Plus, they want to wait until the radiation is done. Structure changes due to radiation makes it difficult to get the sizing right. So, I was giving a plug to insert any time I drink any sort of liquids. To stay properly hydrated, I have been keeping the plug in all evening. If I start to nod off, I wake up due to my stoma occluding and my air intake being blocked. Sort of like a bobblehead doll, tilt my head forward and I cannot breathe. lol Had a fluoro esophagram this week. It showed that my esophagus has narrowed to 0.5cm at one point. This narrowing explains why swallowing anything has been a huge problem since I started a solid diet. When my esophagus becomes blocked, then I cover my stoma, tilt my head back, and force air from trachea into esophagus and the blockage is cleared. Blockage usually is just food that wasn't thoroughly chewed enough prior to being swallowed. Once I was able to proceed to eating solid foods again, it has been taking me over a hour just to eat a sandwich or a small meal. Each meal was a very lengthy process. Everything was getting blocked, even food I had chewed to a mush. Only totally soft foods, like broth, pudding, gelatin, etc., have gone down easily. Foods with no solids pieces or cut extremely fine are also easy eats. But with loss of taste buds for salt, and this week I've noticed that sour is fading as well, not many things are appetizing nor appealing. I know from the past that my sense of taste for sweets will be going soon. Interesting twist in this whole situation: with the plug in place to stop leaks from liquids, I cannot use the stoma to clear blockages. Thus, any type of eating has become a huge time consuming task. And if a blockage occurs, I have to dash to a restroom in order to clear it properly. As I lose more of my tasting ability to radiation, I will need to transition to tube-feeding as my sole means of nutrition, just as I was after my last surgery. This means living on nutrition drinks and no food until the blockage is taken care of my the docs. I will need to wait around 3-4 months after I finish radiation before I can get a referral to a GI specialist in order to deal with the esophageal constriction. Donations are still being sought! You can give here, or contact me for PayPal, Zelle, or Venmo info to forgo fees. Cancer sux!

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Update: Still recuperating from my treatments at MUSC(chemo and radiation). Energy levels are still very low--sleeping loads. Vertigo is horrible especially when I go outside in the heat. Most of the radiation burns on my neck have healed. Inside of throat still burns as is expected, but meds keep it tolerable. The esophageal constriction is still affecting my eating. Still have taste bud problems-no salt sensation along with a few others. I'm living on nutrition drinks, ice cream, and trail mix. Having a 0.5cm esophagus is not a good thing, especially since my speech valve is still leaking. I have a plug inserted in the valve most of the day to keep liquids from seeping through my valve into my trachea. This helps me be able to eat and to stay hydrated. It also prevents me from choking while doing both. To speak, I have to pull the plug. Reconstructive surgeon said it would be 2-3 months after end of radiation before the constriction can be dealt with. I had botox injections while in Charleston for my First Bite Syndrome, but it hasn't helped. Can get two more sets of botox to try to alleviate the pain from it. I'll meet with the oncologists next week for a follow-up. They will do blood tests to make sure the chemo side effects have abated. I'll have another check-up at the three month mark. Got my first pre-insurance bill(Screenshot above) for the first three weeks of radiation-->$101K! So, friends, my GoFundMe fundraiser is still ongoing until this entire ordeal is completely over and done. If you haven't helped out with a donation yet, or you want to help again, you may forgo the fees taken by GoFundMe by using PayPal: paypal.me/princebayfarm Payments through both Venmo and Zelle are also available! For my UK friends: this is why you should do all in your power to keep your NHS! Feel free to share this screenshot to anyone who thinks that privatizing the NHS is a good idea. This was shared with Twitter and your donors ======================================================== Had last radiation treatment today!!! Completed full course of chemo this past Monday. I have follow-up appointments with my oncology team in one month. Then another follow-up in three months with testing to confirm that all is done. Will be heading home tomorrow after a month away from the farm. A huge shout-out to the wonderful folks at Hope Lodge here in Charleston! They made the 6 weeks of treatment nearly stress-free. They become family while here, providing group meals, goodies of all sorts, and wonderful friendships. You see folks leave when they have finished treatments and wish them the best. You greet the new folks as they arrive. You hope all they have successful treatment outcomes while dealing with the scourge of cancer. If you haven't helped out with a donation yet, or you want to help again, you may forgo the fees taken by GoFundMe by using PayPal: paypal.me/princebayfarm Payments through both Venmo and Zelle are also available!

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The post below was written after my first round of radiation treatments for my asymptomatic laryngeal cancer of my vocal cord in 2016. This cancer was discovered solely by accident because I complained to my PCP about occasional hoarseness. An ENT saw me, then had me come back for a follow-up two months later. That's when he noticed a small spot that wasn't there before. Never any symptoms of anything. Biopsy confirmed that it was squamous cell sarcoma. Seven weeks of radiation and they said it was gone. What followed, within a few months of the post below, was almost a year of every freaking symptom of throat cancer! I was later told that post-radiation damage masked all chances of PET or CT scans picking up anything cancer related. Finally, in November 2017, when seeing my third ENT for another "second opinion", the radiation damage had abated enough that something seen that warranted another biopsy. This biopsy found that the laryngeal sarcoma had recurred. Though my MUSC Oncological ENT said that radiation did NOT kill the cancer cells, that it had only masked the original sarcoma. What would be an extremely life-changing surgery was scheduled for 2 Jan 2018--my laryngectomy! As with all obstacles I have faced, it was just another one to scale and conquer! And adapt to this new lifestyle I did, just as I did with the diagnosis of the new cancer discovered last year in my oropharyngeal region of my tongue. ===================================== November 24, 2016 · Shared with Your friends Good news...saw my oncologist yesterday for results of CT scan...no trace of cancer...radiation treatments got it all...Happy Thanksgiving!

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The days are getting shorter as the seasons change yet again. People huddled close together by the hearth fires, telling the old tales of times when the land was full of life and the adventures that were had by all. These stories were also told to remind all that even while the days were short, the winds howled, and the cold was biting, that it was only a part of the life cycle. In just a few weeks, the solstice will be upon us, signaling the return of the sun and the lengthening of the days. In ancient times, this was cause for celebration in every culture as a sign that life was returning to the earth. Even as the days would be more frigid and the cold would hold the land in a frozen grip, the sun stayed longer in the sky, giving all the promise of the upcoming spring! As the last post I made about my cancer battle was one of giving thanks, this one is to celebrate the fact that it is the giving season. I am truly thankful for all the thoughts and prayers that were sent my way during the past year for my surgeries and cancer treatments! So many sent me messages during the summer months saying that they would donate when things were better for them. Others said that trips, graduations, weddings, births, etc., prevented them from giving at that time and they would help later in the year. This is a reminder to all that I still have multiple tests and scans planned, and many trips to MUSC to make. On Dec 5th, I will go for an esophageal dilation to hopefully stretch my esophagus from 0.5cm or 1/5" to a size where I can consume normal food again. May 15th was the last time I ate normally without any issues. My last post listed many of the health issues I am still facing. The holiday season is upon us and again I post this plea through my GoFundMe campaign. Many have donated previously throughout the span of this campaign, and to them I lift a hearty thanks and wish them the best this holiday season!!! To all the others, I hope you can find it in your heart to give what you can to help with my expenses! If you would like to forgo the fees charged by the fundraising website, you may DM me for my links to either PayPal, Zelle, or Venmo. Any and all donations will be tremendously appreciated!!! Much love to you all this Yuletide season!

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Happy Winter Solstice!!

Merry Yule! Happy Hannukah! Merry Christmas!!! Wishing everyone a wonderful holiday season. And may the next year be better than the last one for us all!!! And what a year it has been! One year ago yesterday, one of my oncologists at MUSC told me I had at the most 1 to 3 years left on this molten rock with the habitable crust orbiting Sol. Why tf would a doc tell a patient something like that two days before Xmas?!? (I dubbed him Dr. Death after this.) No worries though, we had options! The past 15 months has brought 2 new cancer diagnoses! -->September 2021, a set of symptoms presented and an endoscopic exam found a new mass in the oropharyngeal region of the base of my tongue. Four surgeries: >TWO endoscopic TORS surgeries--> >1st surgery was in November 2021->1 hour in surgery, 7 days staying with the wonderful folks on 7 West, the Head/Neck Oncology Post-Surgical Unit at MUSC(#3), The margins were not clear when pathology reports came back from lab! >2nd surgery was in February->6hours in surgery, 7 days staying with the wonderful folks on 7 West, the Head/Neck Oncology Post-Surgical Unit at MUSC(#4) All traces of cancer gone! -->Less than two months later, a diagnostic blood test found cancer DNA. The subsequent CT scan found a new cancer had grown back in exact same place and was same size as previous sarcoma(2+cm)! >3rd surgery was 16 May, total time in OR ->a little over 19 hours, a lateral neck dissection with a latissimus dorsi flap reconstruction, & a PEG(feeding) tube insertion. >5 1/2 days in STICU/ICU. >3(or more) Respiratory/pulmonary arrests(stopped breathing) with resultant resuscitation(bagging and all the cool things that go along with coding in ICU!)) >Yet another stay with the wonderful folks on 7 West, the Head/Neck Oncology Post-Surgical Unit-my fifth stay with them! >When I did the pre-registration for this journey into the MUSC system, I changed my preferred name from Nick to "McLovin" and, as they say, the rest is history! >a total of sixteen days in hospital -->SIX weeks chemo & radiation treatments at MUSC while living in Charleston, SC! This was from mid-August to 30 September. -->From EXTENSIVE dental work to repair damage from radiation caries resulting from initial radiation treatment in 2016, fillings on most teeth, 4 root canals, 2 crowns, 3 restorative build-ups >4th surgery was on 5 Dec, an esophageal dilation. My esophagus had constricted to 0.5cm after my May surgery. Discovered the constriction when I began chemo and radiation treatments in August as that was when I finally transitioned to eating normal foods. It would take a hour to eat a sandwich. A regular plate of food can take up to 3 hours before I can get it all down. I am used to eating cold food as I can never eat fast enough to consume things while they are still hot. Swallowing liquids, some soups, ice creams, and other similar foods are all that could go down. So many things get stuck in the constricted area and take a great effort to dislodge. The dilation increased its diameter from 0.5cm to 1cm. And if each dilation will double the present size of my esophagus, then I will need at least three more dilations. This would to restore the esophagus to 8cm and swallowing will return to normalcy. My PEG tube was removed in November. When I had a PEG tube in 2018, once it was removed, the area healed up the same day. This time, the site has been leaking the entire time. My GI specialist said it would take a month to fully close. The month deadline has passed. I will need to schedule a quick surgical procedure for them to use a gastroscope and close the leak from the inside. Radiation has altered the tracheoesophageal puncture through which my speech valve is located. In the past, once the valve had sufficient biofilm to begin leaking, I would need to dash down to MUSC to get it changed out with a new one. As this is a 2 1/2 hour drive each way, I would wait until the leak was severe before getting it replaced. To clarify, when the valve leaks, liquids will either drip or squirt from my esophagus into my trachea. This causes a massive coughing episode as my lungs try to rid themselves of the liquids and the drowning sensation which result! I had become accustomed to dropping everything to head to Charleston for a replacement valve. It was a great opportunity for our farm helpers to have a few hours to explore Charleston while I took care of this necessary task! And it has given me the opportunity to become friends with my SLP(Speech/Language Pathologist), Julie Blair! I have found that she is my most steadfast advocate when dealing with hospital staff when staying post-op. She is also the person who finally listened to me and scoped me in September of last year. She discovered the mass which turned out to be the oropharyngeal sarcoma. Rather than change out the valve when the biofilm builds up enough to prevent the valve for completely closing, now I need to insert a special plug. The plug prevents liquids from seeping through the valve at the cost of speaking. I can "pull the plug" in order to talk, but it is a pain to reinsert in back into place! When I return to Charleston on 5 Jan, I will have the valve replaced The symptoms and conditions I'm dealing with now as the year 2022 comes to an end! A wonky tongue that has lost a good portion of its mass on the left side First Bite Syndrome Constant burning pain in throat/tongue(controlled by meds) Esophageal constriction Radiation burns Majority of beard loss from radiation Severe vertigo Radiation brain fog Mandible necrosis Radiation fibrosis PEG site leak TEP/Speech valve leaks After all of my surgeries and treatments this year, the prognosis now is much, much better!!!! Last two blood tests to detect cancer DNA have been negative(good). I will have a CT scan on 5 Jan which is 3 months since I finished chemo and radiation treatments. This scan is to verify that nothing nasty has grown back. Oncologist(Dr Death) feels that the CT scan will find nothing and has been very optimistic the last two times I saw him! Ho, ho, ho! And as we are in the giving season with Christmas just a day away, I would like to remind everyone that the bills are still coming in, and as more treatments are needed, this fundraiser will continue. Over the months that I've had this online, I had quite a few people to promise to help out as soon as they could. They told me this in the summer, and in the autumn, and, now winter is here. So, the graduations have happened, the weddings are done, the new births are done, so what is the reason now? Over the years, I have always helped everyone every time I could do so. Many times, I really didn't have it to give, but I opened my heart, dug a little deeper, and did the right thing. If all my friends and relations were to do without a fancy coffee drink, a meal out, otherwise, made a small sacrifice in their routine, then they would be able to make a small donation to help out. And all that is being asked is a small donation. Show some love and let me know how many friends are thinking of me this holiday season! So please help if you can.

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One year ago yesterday, one of my oncologists at MUSC told me I had 1 to 3 years left on this molten rock with the habitable crust orbiting Sol. Why tf would a doc tell a patient something like that two days before Xmas?!? (I dubbed him Dr. Death after this.)

No worries though, we had options!

After all of my surgeries and treatments this year, the prognosis now is much, much better!!!!

Last two blood tests to detect cancer DNA have been negative(good). I will have a CT scan on 5 Jan which is 3 months since I finished chemo and radiation treatments. This scan is to verify that nothing nasty has grown back. Oncologist(Dr Death) feels that the CT scan will find nothing and has been very optimistic the last two times I saw him!

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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.

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