My Latest Cancer Battle
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 recieved 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 the 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 teaching 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 in Rochester, MI. If approved to participate, I would need to fly to Michigan and stay 2-4 days for the treatments. The clinical study should be in mid-May.
The expenses associated with the travel requirements needed for 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!
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!
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
DONATIONS:
PayPal: paypal.me/princebayfarm
GoFundMe: https://gofund.me/fff2bb44
Facebook: https://www.facebook.com/donate/415588877061174
ALBERGOTTI, MD at 5/16/2022 1:18 PM
Brief Op Note by Judith M. Skoner, MD at 5/17/2022 3:35 AM
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Progress Notes by Joshua E. Fabie, MD at 5/17/2022 6:40 AM
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H&P by Evert Eriksson, MD at 5/17/2022 4:20 AM
Progress Notes by Rebecca Fuller, RD-AP, LD, CNSC at 5/17/2022 12:49 PM
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Progress Notes by Kristen M Quinn, MD at 5/17/2022 7:57 PM
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Progress Notes by Kristen M Quinn, MD at 5/17/2022 7:57 PM
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