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#201144 01-13-2022 10:29 PM
Joined: Sep 2007
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I am going through my 4 round, after my 3rd round (I was depressed and even thought about ending my life, I did not do it) I told myself if my cancer would come back I will not fight it.
2021 been a crazy year, April they remove 2 precancerous spots - End of Aug the doctor found some ore around my implants and removed it. During this surgery he seen a few more and wanted me to wait until I heal up. I told him I did not want done until I get back from my trip to Punta Cana and he agree. The end of October he did the surgery and two days after I get a phone call from Dr. Hunt. You know when the doctor calls you it is not good. He told me one margin came back as cancer and he would like to see me in the office to talk about the action plan.
I was very upset, how can this come back when you are 8 years out. I told my family I was not going to fight it, that did not set to good with them. So I did some soul search and again to do it. I went to my appointment and Dr. Hunt said the cancer spot is very close to front of the jaw and he said he would also remove some of the left side of the jaw. (Had the right side done in 2010. We planned the surgery for 13DEC, the only leg they could go into would be the right leg since they already took bone from the left leg in 2010.
Dr. Hunt back up doctor was Dr. Cannon who trained under my Dr. I had in Seattle who did my left jaw.

Dec 13 - I went in for surgery - they said it would be around 10 hours - They finish at 14 hours - They would hook the vein up and soon as the blood move through it clotted on them. They finally found one that work. During the night the flab started t0 fail.

Dec 14 - Doctor Cannon can in and said the flab is failing and he said we off to the OR room and he was the one to wheel me down. - he worked on for a 8 more hours and could not save it.

Dec 17 - Both Dr. Hunt and Dr. Cannon had my back in surgery to remove the flab and the new flab was from the shoulder area. My surgery was planned at 2PM, they took me back at 3PM - It took them 2 hours to find veins for new IV's. I have never had a issues with them not finding veins to work good thing I was knock out for this. They was able to start the surgery around 5PM and finished up at 1AM. This was the painful surgery I have had, They could not get the pain under control. Since it was in the middle of the night, the on call ENT doctor refuse to increase my dose or move up to stronger pain med. I over heard the ICU nurse say to nurse in the room, I have never had the must rudest doctor and was not helpful. He said it will be in his not.
The next nurse on duty was able to get the pain team in and they was able to get it under control. Later that day, Dr. Hunt came into the room and I type out a message for him and told him how rude the Doctor was and refuse to help me with the pain. He told me I say the nurse not and I will get to the bottom on it. Also the Dr. Hunt is head professor and Chef ENT in the center.

Dec 19 - I felt good through out day and the plan was to move out of ICU the next day. The nurse came in an did my meds and BP check. About 10 min I could feel wet on right side and I reach over and felt it, I look at my hand and it was covered in blood. I push the call button, the nurse came in and turn on the light. The vein broke open and was shooting blood 6 inches high. She yelled I need help ASAP - I had 4 ICU nurses in the room, my nurse was applying pressure to the neck, the other nurse called for the ICU Doctor and call in the ENT on call doctor. The ICU doctor came in and said keep applying pressure and we need to wait for the one call ENT Doc to get there. Someone called her before ICU doctor called her and she was on way already. She was there in 15 min - She repaired as much as she could. She told them to call in the OR team and Dr. Cannon. Since this was a Cancer Hospital and not trauma hospital, they had to call them in to prep the OR. the 2 hours seems like for every. about 30 min after the mini fix, t broke down again. So the nurse was stuck holding the neck again. She was so surprise how I kept calm through the ordeal. Right be the OR team got there, I would zone out and she would tell me to wake up and worked on keeping me awake The OR was prep and the team showed up in the my room. The told the nurse they will take over and off we went.

So 4 surgery in one week

I was let out of the Dec 25th, I thought let the healing start. The time out the hospital was 30 hours, on the morning of the 27th midnight, my mom was changing the bandage under my neck and she goes it open up more. She called the on call nurse and told her he was opening up. We sent her a photo of it, she goes get to the U of U ER room and ask for her as she was on her way. For me it an hour away to the hospital. We get there, the Doctor get in and looks at it. She called the Huntsman Cancer Center doctor on call and shared more photos with her. About 30 min later she return. You are going to be admitted and it will take them about 1 hour to get a room ready, about 1 hour 2 aids showed up and said are ready to go. the Nurse wrapped me up warm blankets and they started the 15 min walk through tunnels to the Huntsman. The wound open all the way up and they started the twice a day changes.
The doctors said lets place a wound vac on him, That is not a fun area little room to get everything to seal. I was able to leave the hospital 1JAN.

I had a follow up with doctors on the Wound Vac, he was very impressed on how it was working. They think it will take about 6 to 12 weeks., but he thinking he might need to do some skin grafts after it heals up.

So I have 2 flap surgery to bring them down and may the skin graft.

I go why did I go through and just not go with my plan not to fight it. But thinks happen for a reason and it will be shown to be one of this day.


Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin
TPN feeding for 5 months during treatment and after.
Tumor was on the right side of the tongue.

Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
lvredrock #201146 01-14-2022 07:39 AM
Joined: Mar 2002
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Patient Advocate (old timer, 2000 posts)

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You’ve had a hard journey. I can relate to your experience. I also had a fibula free flap which two days after the 11 hour surgery failed because of vascular issues, three days later again the venous side of the blood supply failed. Back into surgery, then two days after that another vascular failure and yet another surgery for long hours, with a much more extensive pectoral muscle flap created to get non radiated blood supply to the fibula that was now plated to my mandible where they removed the necrotic bone from large radiation exposure twenty years before.

It has now been 7 months with no new issues, but life is very different. I have had to relearn to do even the simplest things like walk. I can relate to your situation because I am living it. What I look like is far from normal, and life has many compromises. But it is life, and I have meaningful work to do each day, though some of what I did before I cannot do, as I no longer can speak in a way most people understand me.

We must endeavor to find two things. Acceptance of things we cannot change, and a meaningful use of the extra time we have been given. While we can discuss why things succeeded or failed, what is important is not that we suffered, what is important is what do we learn from that, and how do we apply ourselves in the best way possible moving forward. The answers to those questions I believe guide our future, not what happened to us that brought us here. There is no yesterday, there is only today. How will we play the cards we have been given?

This is not something I have discussed publicly before. But I wanted you to see that you are not alone.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Sep 2007
Posts: 60
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Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2007
Posts: 60
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Hi Brian

Thank you for your reply.

We are both warriors and we been through a lot. After my last surgery in 2013 when I lost some of my tongue my speech went down, I found that people do not listen close and could not understand me. If they listen they could get what I am saying. If I order fast food, I would type out the order and give it to them. That fails sometime as I found people cannot read.

We are strong

Barry


Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin
TPN feeding for 5 months during treatment and after.
Tumor was on the right side of the tongue.

Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
Joined: Aug 2020
Posts: 62
Likes: 4
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Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 62
Likes: 4
Thank you both for sharing your stories. Epitome of perseverance and inspirational to me. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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