Jeff's Cancer Battle - Episode 47
Vložit
- čas přidán 17. 02. 2019
- Please accept my SINCEREST apology! I FINALLY got around to recording a video update, almost nine MONTHS after finishing my cancer treatment. Buckle up ... here we go!
= = =
Jeff Johnson is a broadcaster, journalist and itinerant humorist who shares his story and the lessons he’s learned as a physically disabled, Autistic cancer survivor.
Visit Jeff's blog or let him know if you'd be interested in having him speak to your group or organization at: backtoyoujeff.com.
Hi Jeff I'm glad that you are well. Thank you for sharing. I had 30 radiation and chemotherapy 1 a week for 6 weeks after my lower jaw removal due to cancer.Went through a bad patch. But I survived.
Thank you for updating me and my fiancé watched all of your videos to get information. We are now staying in a hotel and going to cancer center of America Atlanta in Newnan Ga. They are great. He has throat cancer and must receive 35 treatments of radiation and 6 treatments of chemo using 2 different types of meds low dose. Prayers for you and please keep my fiancé in you guys prayers Arthur
Tiffany Johnson . Hope the best for you .
Nice seeing you , I ended 39 radiation treatments and my oncologist does not like giving 2 a day just for the record , but February 6th was the end for me , I needed no feeding tube and ate solid food right through, I also lost just 17lbs total , but used a Protocol of things I researched that really helped with my treatments and healing , I am 2 months post now and finished my 1 week of work driving tractor trailer doing P&D work , I also started to work out 3 weeks after ending and believe this helped me tremendously, sorry your having a tough time , hang in there !
Wow! I'm very happy that you dealt with treatment so well. You're an inspiration!
Jeff Johnson - Speaker, Author, Blogger, Coach thanks Jeff , were all different but I have to say ? I’m pretty proud of you and what your doing , and I admire what you do in your motivational speeches , your a good guy , I see you in my FB support group from time to time , it’s there I do my thing in helping people and cancer sucks Jeff , but it made me a more in touch individual and finally realized how short our life’s truly are ! Keep up the good work Jeff ! Keep kicking cancers ass 👊🏻👊🏻👊🏻
Hi Jeff.glad your doing so much better.i had commented on video 8 that i had been diagnosed with throat cancer.come to find out stage3.so getting ready for my 5day of radition for 7 weeks with chemo 3 times during radition.done had mask made(didnt think my nose would ever pop back up from that.lol).im scared but after watching you and your journey im more at eas with it.thank you for all the tips.i promise ill be trying them all if needed.prayer for your continue healing.have a blessed day.
Thank you for sharing. I. will be going through radiation and maybe chemo for vocal cord cancer. You are giving me so much hope. To be prepared for what may or may not happen is the one of the best defenses there is. Again thank you and keep sharing.
Praying for you, your loved ones, and everyone involved in your care!
GOD BLESS YOU, BROTHER!!!!! MAY YOU CONTINUE TO NED UNTIL YOU REACH YEAR 5.
Jeff, thank you so much for the update. I was getting quite worried, but it appears you have come through the worst of it with a positive attitude that not many people could match, given what you went through. You are certainly here for a reason. Thank you for sharing your journey with all of us.
I'm so happy for you! I hope you continue to heal.
I thought I had bad luck! Thank you for you videos! Going through 33 radiation and 2 double chemo. I have 1 more week of radiation. I have a mass on my vocal cords. Just starting to feel the effects from radiation. I also have a feeding tube (had horrible pain and infection) and on top of that, I have a trach. Had to have emergency tracheotomy due to tumor cutting off my airway and was close to death. It never should have happened! Ent couldn’t do biopsy for a month. He said he was going on vacation for 2 weeks and other 2 setting up. I wasn’t happy about it but I thought it should be ok cause he looked at it. I live in small town. I should have been recommended to someone else! So I’m double wamied! It’s a pain cause There is a lot of maintenance along with secretions. Anyways, your videos are the first ones that I continued to watch. Thank you cause you have helped me with certain things and your funny!
So happy i seen your video. Your a great person. I just got done with the same treatment. And was in and out of the hospital through my journey. And I’m on a feeding tube cause food taste so bad . Don’t wanna use the word . I’m lucky I don’t have dry mouth . I’m really happy for you and I hope I get a nad too .
Good to see you on here and looking good! Thank you for being an example of how to have the right attitude to get through this. Encouraging and makes it less scary.
R E - thank YOU!
Amen! God is good. Thank you for making these videos❤️🙌🏼
Congrats for making it to ringing of the bell!!!
Just got a tonsillectomy not because of sore throats but because my tonsils stayed huge plus ent also noticed couple of nodules on thyroid and behind throat. Your videos are every helpful. Not sure what's going on at this moment time but staying positive.
Thank you.. God Bless
Thank you for sharing your ordeal. It brought it all back to me from last year. I too have memorial day in mind because coming from UK, I was visiting New York for a few nights with my family and starting day was Memorial day. But I already had i my mind to seek a Doctor upon my return to UK. Needles to say that the Doctor, on examining my over swollen lymph gland under my chin, gave me warning and a note to quickly visit the hospital and over the following 2 weeks and a biopsy on the base lower tongue the same diagnosis was given as yours. Like you I was given the option of Chemo that would give tinitus but opted for cimaxutab instead, oh and 30 daily visits to Radio therapy ward. Started 1 Aug last year, on the 7th was my 55 birthday. the treadmill was not so bad as yours but I did loose almost a stone but managed to drink ok, eating was a night mare for a month.You are correct about the pain killers, ..you wont get addicted to them if you need them, they told me also. And the advice on calorie intake, this helps the healing..but ended up on 4 ensures per day including anything soft I could get down.. no tube for me.I had some bad radiation burns to one side of my neck which frustration to manage, all sorts of creams. Back at work on the 1st November and just returned to swimming weekly. I understood every word you said. Best of luck to you.
WOW! , What strength you have my friend ,much more than me?
I was Diagnosed with with squamous cell carcinoma head and neck cancer , With a large egg size tumor on the side of my neck a year and a 1/2 ago and only have done Natural healing remedies that are not working?
They want me to start with proton therapy and chemo but after hearing your testimony, I truly don't know if I can endure all that pain and suffering plus I have no one to take care of me ,not saying that for sympathy but just the truth, I pray for your continued healing And I pray for an answer for me....
God-bless everyone that has gone through or is going through this horrible Disease🙏
Hank Picard - I would encourage you to explore proton therapy if you're eligible. My tumor was too large and too deeply embedded in my tongue for proton. It is a much smaller beam with, I'm told, better controlled side effects. Yes, cancer treatment is hell. But it's hell for a limited time. Asks it gets better. I'm sitting here with my wife and daughter eating ice cream. Nine months ago I couldn't sip water. It's worth it. Praying for you!
Jeff,,, Thank you so much for responding and I'm sitting here with my 2 dogs in tears scared to death,,, Lucky I got approved for proton therapy although my mass is the size of a large egg but on the side of my neck So I guess they think they can zap the monster out,, I'm praying to God that I don't have to do chemo but they're hinting In combination with the proton for more success,
Once again God-Bless You an Your Family for doing these video's to give people like myself and Others that are going through this some Hope. Glory to God🙏
@@thentheresjeff
My dear friend Jeff how are you doing?
I started proton therapy 10 days ago and had to stop Friday too much pain too much burning and way too many witnesses of other people going through this and their sides of their face burned off from the radiation even though they say it's pen beam radiation? They also hit my jaw that compromised some of my implants now I taste metal in my mouth all the time, I really don't know what else to do except back to the holistic protocol and maybe looking to keytruda but you have to have the PT 1 protein Gene for it to work or at least that's what they've said? And my luck has it I don't have that protein Gene😞 anyway ,well wishes to you my friend and please do an update. God bless.
Hank Picard - man I am so sorry. This is the first I've heard of such negative results with proton therapy. I was hoping it would be better for you. Please talk with your oncologists about IMRT radiation therapy. Praying for you!
@@thentheresjeff
Hi Jeff, thank you for getting back to me, I am very surprise also of the side effects an the pain with the proton therapy,
I did reach out to my doctor and he seemed like this is just part of the process, but compromising my jaw and my thyroid is unacceptable,, Specially where the mass is in my neck and what they told me that they would not expose those 2 things,
Even my implants on that right side of my jaw was affected And I can taste metal in my right side of my mouth ,very strange!
I will try to research other protocols but I am very happy that you're doing well my friend..
Glory to God🙏
Thank you for the update. I had come across your videos when I was going through treatments myself for the same type of cancer that you had. Like you, I was statistically not supposed to get that cancer. I lost 60 pounds myself but have gained about 7 of it back and am maintaining. Finding pants that fit is the worst part. Either too short or too big in the waist. Thankfully, I was able to have my feeding tube removed and am eating solid food. It is limited but getting better. I hope that your feeding gets better. It really is a key to getting over the lack of energy hump. Praying for you to get back to being as normal as possible as quickly as possible.
How do you mean not statistically meant to get it? Did you have a low risk HPV or something?
Hi, James ... sorry, I just saw this question for some reason. Head and neck cancer is a very small percentage of diagnosed cancers every year, only about 40,000 people. Throat cancer is a smaller part of that. And HPV+ throat cancer is an even smaller subset. Statistically speaking, most people are very unlikely to get it, even if they've been exposed to the HPV virus, which most people have. Most people who get HPV clear it with no symptoms. Those who do get symptoms usually just have a wart. Then there are those of us who, as I say, "win the genetic lottery." Hope that helps!
God Bless You!!
You are awesome man so happy that fred is now ned
Take care Friend
You have an upbeat attitude....laughter is like a medicine says the ancient book of ...hmmm..maybe proverbs....maybe psalms....anyway, may you find freedom from this "dark matter" and may you find happiness in friends and family and especially God who loves you so much...i like the way your voice goes up and down lightly like a lovely little songbird. You are quite the radio man ! ..God bless you with long life now on this side of the soil and also the other side over the Rainbow....
Thank you, you made me smile!
Been wondering how you are! God bless you!
Thank you for sharing and God Bless You...
very good off you to share your throat cancer with us, I also had throat cancer 10 months ago but I’m fine now, other than my taste buds are not back to normal and eating is still a task Larry Scotland
Larry - I just saw your comment. Sorry for the delay in responding. Glad you're doing better. The taste comes back. Two years out, some things even taste almost normal. The only thing that taste's exactly as it did before is a cook-at-home meal kit sold here in the U.S. called Hamburger Helper. I often joke that I must have done something REALLY bad to have Hamburger Helper be the only thing I can taste correctly. LOL!
Anxious to see your next video. I finished radiation to larynx March 6, 2019 and still struggling. I did not have chemo so I was lucky but the effects the radiation has been brutal. I do not even know yet if it worked. I would like to hear how you are progressing so I can have an idea of what to look forward to.
I wonder if you know how valuable your videos are. I was you tube surfing and saw your first cancer video. I fast forwarded to the outcome, hoping for good news. I'm going for some tests this Wednesday as they found something on my ovaries. I am not as brave as you. As I age I learn to adjust to poor eyesight, creaky bones, bunions, and bursitis. I try to take these things in stride. I too hope that God will watch over me and has plans. But as a practical human , I don't know if I have the strength or desire to go through as much as you have. Blessings.
You can do this, Susan! Thank you for your kind words!
Godbless
I don’t know if I can do this. ** edited **. I did it and am fine. I am much better now than before treatment. I barely remember the horrific treatment.
I too have the same cancer as you God bless you Jeff my side affect after radiotherapy is thick phlegm at the back of my mouth it's hard to get up and mouth ulcers too my treatment finished 25th Jan this year
cathscott8 - thanks for watching the video. I found that the more water I could take in - through the tube or by mouth - the better the phlegm got. Also Mucinex maximum strength helped. Just check with your doctor or pharmacist to make sure it won't interfere with any of your other meds. Praying for a speedy and pain-free rest of your recovery!
@@thentheresjeff thank you for the advice
My dad thankfully only needs radiation for 5.5 weeks. He is starting his 2nd week this week. I'm glad you are doing better and that you keep improving. Have you looked into foods that detox your body from radiation and chemo? I know you're limited in your foods you can eat, but maybe trying to get some good nutrients in to help heal would help in the healing process. I keep making sure my father drinks a ton of water and drinks the carrot juice I've been making him. I bought him cbd cream for his neck to use after treatments so his neck doesn't get raw from radiation. He so far has only experience one night with dry mouth. I also am looking into cbd oil to help with inflammation inside the throat and was wondering did you use any products like this during your treatment? I will definitely share this with my dad because being a cancer patient cant be easy but also being a part of a family who is affected by cancer isnt either. Anyways I'm glad you are on the mend. Thank you for your information.
Try your Dad on cold almond milk to drink, I found it helped sooth the soreness.
Hello,my name is Karen, I have squamous cell carcinoma, or I had it three months ago. I didn't follow up with radiation after my surgery. They removed less than one half of my tongue and lymph nodes in my neck. It's all been a nightmare as you well know. On top of everything else I have no medical insurance. Thank you for sharing your story. I keep wondering if I have waited too long.
Hey, Karen ... I'm praying for you.
Jeff, I am glad that you are back, today I have been admitted for a massive Chemo dose for 3 days following by Radiation for 7 weeks and 2 more chemos in the middle of the treatment and at the end of it, pretty much like you. I am truly scared of the side effects and the pain that you described but my biggest concern is my voice since I am an insurance broker and I make a living at talking. Can you expand on the talking part? Also how long do you think that it will take after the end of the treatment for me to be able to sustain a long conversation ? I am so glad that you are back, your videos have truly helped me!
Hello and thank you for taking the time to comment. Don't let the side effects scare you. Are they fun? No way. Can you overcome them? Absolutely! One thing I've learned for certain through this experience is that your attitude is as important as any medication or treatment you'll be given.
When I went in for my evaluation, I specifically told the radiation oncologist that I wanted a "block" in my radiation fields to protect my vocal cords, IF that could be done safely. If you look at my week 8 video, about 4:45 in (czcams.com/video/iYF6EoQyHgg/video.html) you can see the "pale spot" on my neck. It's a vertical "slice" about an inch wide and about three inches tall. That's where my radonc "blocked" the radiation in the treatment plan in the computer. The beam would start on the side of my neck, turn off when it got to the edge of my vocal cords, turn back on, and continue to the other side.
Please ask if this can be done for you, even if it means postponing your treatment for a day or two while they redesign your treatment fields. I sincerely believe that this made a HUGE difference in my recovery. As someone who makes a living with my voice - and who has physical disabilities that severely limit my other options for employment - this was a BIG deal to me.
I probably had difficulty talking for the last three or four weeks of treatment and for about a month afterward. During treatment, it wasn't that much of an issue. I was living alone in an apartment in Houston and my only interactions were with healthcare personnel. After I got home, it was frustrating. I had to clear my throat a LOT. And the dry mouth made it worse. Xylimelts helped as did xylitol gums. Trident has a lot of flavors and many of them have xylitol in them. I can still only chew a half-piece at a time because the flavors are so strong.
Please check back in and let me and everyone else here know how your treatment is progressing. You're in my prayers! (What's your name, by the way!)
I am George and I am a Christian with blind faith like you.
Hellooooo Jeff I just seen you video, I want a tell I personally know how it feels! ! I was diagnosed with the same canser on my left tonsil ; ( I still feeding tube praying that I'm able to swallow more so it can be taken off me. Many blessings. .
Norma Rincon - don't give up. I ate a small chili dog today (no bun). It hurt. It was difficult. But I got it down. Now, I burp! 🙂
Praying for you!
This is April 27, 2023, and I go see ENT at Eastern Virginia Medical School in Norfolk. I woke up not feeling right on Feb 16, 2023, tested positive for MONO not once, but 6-weeks later as well on April 18, 2023. My PCP was blaming all my symptoms on MONO and if she had her way, I’d still be a month or so out from seeing a ENT, but was in the ER on 4/18/2023, and ER dr said a mono sore throat does not last 8 weeks, and my voice is so hoarse I can barely talk for 6 weeks. I had surgery April 2021, and they had to force the breathing tube down my throat, and ENT put a thin tube thru my nose and down my throat and even I viewed my vocal cords and no abnormalities were seen. I see Dr SINACORI on May 4, 2023, so he will find out what is wrong. I’ve never smoked or drank
I’m sorry that I’m just seeing this. Do you have an update?
@@thentheresjeff yes, no cancer! The mono temporarily affected my sensory nerves in throat. I’m completely recovered now
@@katinabotten That’s the best thing I’ve heard all day, maybe all week. Yay and praise God!
@@thentheresjeff yes! Thank you so much 🙏
Have a friend in the place you were in when you stopped making videos. Any suggestions for his anger and frustration?
Thank you for your comment, and I apologize for taking so long to answer.
This is hard. It's completely understandable to be angry and frustrated, especially if you got this cancer as I did, in spite of never having been a drinker and never having used any tobacco products. (My cancer was the result of the Human Papillomavirus or HPV16.)
The first thing I would say is tell your friend that his feelings are perfectly valid and he's allowed to feel however he feels. He's not "wrong" to feel anger or frustration. The LAST thing he needs is "tough love," right now. (There'll be time for that post-recovery.)
Next, I would say ANYTHING your friend can do to help ANYONE else IN ANY WAY will go a long way toward redirecting the energy from those feelings. I made it a point to learn where most major things were at MD Anderson, and how to navigate the buildings using their wayfinding signage. So, when I saw someone with that, "I'm lost and I'm terrified to ask for help" look on their face, I would just ask them if they needed help finding something. Making myself look for those people took my mind off of me.
Also, I looked for people who were alone AND looked lonely. Not everyone wants company, so this is a gamble. It's also a gamble because I'm Autistic (didn't know it at the time) and I suck at anything past the most shallow social interaction. But, often, I could find someone who was alone and looked lonely, and I would just ask if I could sit with them, "WHILE I'M WAITING FOR MY NEXT TREATMENT." I learned that part was important so they don't think you're a stalker or an MLM rep. LOL! All I had to do was ask them a couple of questions about themselves and they'd usually start talking and not stop until one of us got called back for treatment. I met some really neat people, learned a few things, and hopefully gave them some relief from the echo chamber that being alone with your "treatment brain" brings.
The most important thing, which I've saved for last, is my faith. I call myself a Christ-follower. Some people would say Christian, but I know that term has accumulated some baggage in modern America. If you want to say, "Jesus freak," I can live with that label, too.
To make a long story short, I broke my back when I was 24 years old and was told I would never walk again. They were wrong. There is no medical explanation for why I'm not using a wheelchair. Even though I should have been grateful not to completely lose the use of my legs, I was angry and bitter with God. I blamed him for "doing this to me." And I lost my law enforcement career and my ability to train and teach martial arts, all of which were a big part of my identity. To put it mildly, I was P|$$3D! I did NOT respond to those events well and, as a result, I ran off a lot of people who loved me and wasted a couple of years of my life.
My cancer battle was different. Because I now understand that God had not broken my back, he had simply ALLOWED that to happen in order to protect me from myself. I have a BIG mouth (shocker, I know). And I have an insanely overdeveloped sense of justice, (in part due to being Autistic). I was either going to talk myself into getting killed or do something stupid and end up in prison. God knew that and let something sort of bad happen to me to keep something REALLY bad from happening to me.
So, when I heard, "It's cancer," yes, I got scared and, yes, I cried. (Sent that "man card" thing back a long time ago. It never worked right anyway.) But I didn't get mad. In fact, I asked myself two questions (paraphrased) that changed everything:
1. What am I supposed to learn from this?
2. Who will I be able to help because of this?
I knew God COULD miraculously heal me if he wanted to. He could have thought the thought and my tumor would have been gone without a trace. But, because of my past encounters with adversity - of which breaking my back was just the worst, not the only - I knew this was probably happening for a reason I couldn't yet understand. So, what am I missing? What am I supposed to learn from this?
The second question is what led me to look for people I might be able to help. Yes, in part that was selfish, to distract me. But it was also because I knew I had been living my life too focused on Jeff and not focused enough on others.
So, if you're friend is someone like me, who has a relationship with Jesus, I'd say that's the most important factor. Try and pray to respond to this the way Jesus would want us to.
If he's not, I'd encourage him to find a modern translation of the Bible and read the Gospel of John. It's the shortest of the four books about Jesus' life and it's the one that's most accessible to people who didn't grow up in a Christian church.
Thank you, again, for taking the time to write.
I'm praying for your friend, and for you!