Soooo....I Have Cancer

CompressedCarbon

Thank you for your courage in sharing your story and for the update. It is the best post I've read today. Best wishes for a complete recovery and an amazing life moving forward. No doubt in my mind that you will win.

EvgeniZyntx

Awesome attitude in the face of something awful. Strength and grace to you, heal fast and well!

silvergurl518

wonderful update, josh! so happy to hear the news!

Fab30s

That's one terrible blow and am sorry life has dealt you this card. But your positive attitude is gonna get you through this. FIGHT!! And I will say a prayer for you.

aStrongerSteph

You have an amazing attitude and I pray you will be blessed with a clean bill of health by this time next year.

ryry_

Thanks for the update...Stay strong bro

This is always the silent fear in the back of my mind...It's terrifying...This story helps and is very humbling. Thanks for sharing and get well soon.

Richie2shoes

Glad to hear you are doing so well. My mother had a similar procedure years ago. I remember her relief in having the tubes removed!

MandaJean83

Wow. Your story is inspirational! You are incredibly strong, both physically and mentally. I'll be praying for your full recovery! Keep us updated!!

mrsduke2924

will be thinking of you - you can fight this. you sound so switched on, brave and ready - you're in the best shape you could be to beat this. Hugs xx

dmpizza

Well written, I am sure you will be OK.
I am on this site because od difficulties after part of my intrtines were removed for similar reasons.

Take care.

IndianMuslim

I work in radiation / oncology in Illinois and I see patients come in with every type of cancer imaginable. Some undergo treatment after their initial consultation with our doctors and some don't. I am so happy that your surgery went well and that you are recuperating so wonderfully. It sounds like you have a great support system, including a great team of doctors, and a positive spirit that is extremely helpful in this type of situation. Praying that your appointment with the radiation oncologist goes well. Hang in there, you're doing great :flowerforyou:

BattleTaxi

Glad to hear the news, I hope it continues to get better! Will keep you and your family in my prayers!

nyrina4life

You know, it'll be okay. You're a strong person, and you're young. {{Hugs}}

Don't let stress wear you down, keep yourself from stressing (as much as possible). Keep doing things that make you happy, because this will significantly improve your speed of recovery from the events that will take place.

nmprovo

It's a good sign that the surgeon told you that you will be OK! It means that he's confident they can treat it and you will be back to normal! Prayers for you!

mamacremers

Best wishes. My sister's sister in law had mouth cancer at 25. She had a 1 year old daughter at the time. She put it off because e was pregnant/had a tiny baby and she was broker than broke. They gave her the same prognosis as you before the surgery. She was going to lose half her tongue, would likely need chemo and radiation. When she finally had the surgery, they removed 1/3 of her tongue and grafted from her arm to her tongue and from leg to arm. She looked like hell. And she still gets stares because of how invasive the surgery was. But she kicked it with the surgery alone. I wish all the best for you and I hope you're as lucky as her!

links_slayer

^^ that procedure is exactly what they did to me - although I'm not sure exactly how much of my tongue they took...it's still pretty swollen. But it's going down slowly and I'm getting to the point where I can talk more and more.

AND....I ate some mac & cheese tonight. It was the first "real" food (non-pudding, non-mashed potatoes, non-ice cream, non-yogurt) I've eaten since surgery. It took me about 10 minutes to eat the bowl but I savored every bite. Putting on the 17 pounds I lost in the hospital is proving to be more difficult than I thought....nice problem to have, I know....

Thank you again for all of the support and encouragement. I'm VERY nervous about radiation (mainly the side effects) but will cross those bridges when we get there.

scarrie2

You are very brave telling your story. Thank you for sharing. It makes you open your eyes and realize you are not invincible. stay strong and fight.

hookilau

Surgery went well according to my doc. 9 hours and 40 minutes later I was in the ICU.

After sugery I had a breathing tube in my left nostril, feeding tube in my right nostril. My neck swelled to the size of a softball from the lymph node removal and had a 2 draining tubes in it. My right forearm had a sleeve-like bandage on it to cover the incision they made to take the artery/vein for my flap reconstruction. My right wrist had this weird vacuum bandage on it covering the area that they harvested skin for my tongue from. My right thigh had a ~1.5 inch x ~4 inch area where they took skin to replace to skin on my right wrist. Turns out I didn't need a trachostemy which was good (one less tube coming out of my body...).

On Tuesday night my blood pressure, pulse, and temp started to soar and I was sweating profusely. My room was set to be maintained at 74 degrees F so the blood vessels in my mouth wouldn't constrict in order for the flap to heal. Every. Single. Bone in my body was saying, "Time to wave the white flag dude. You're done." It was a very odd experience. Every breath seemed to take 5 minutes. I closed my eyes and said to myself, "Not a chance you're giving up now. Keep fighting. Don't give up." I have no idea if they gave me any meds (I'd be surprised if they didn't) but my BP and pulse eventually came back down.

I was transferred to a "regular" hospital room on Wednesday late in the afternoon. Later that evening my surgeon paid us a visit. He looked at my mouth, said it looks great, and asked if he could share some good news with us. He said (more) words that I will never forget: "The margins on the tumor were exceptionally clear, and so were all of the lymph nodes we removed." Tears welled up in my eyes as well as my wife's. Through a swollen tongue I was able to manage a "Thank you, doctor. Thank you." Since the question was on both of our minds my wife asked what this means as far as radiation is concerned. He said the path results were definitely a game changer but he didn't want to completely rule it out yet. My surgeon is going to meet with a radiation oncologist at his hospital (this whole thing was done out of network....that's a whole other story that I could go on and on and on about....), discuss this at a weekly cancer forum, and also consult a radiation oncologist (in my network) where I would likely receive treatment if needed.

The tubes slowly but surely came out over the week but I came home with my feeding tube still in. Ugh. What a pain in the *kitten*. It didn't hurt but was uncomfortable and made it difficult to swallow and breathe. It came out at my appointment last week which was awesome. After he removed it my doctor handed me a small cup of water and said, "Here you go. Cheers." It was the first sip of water I had since the night before surger and it tasted oh so good.

I don't know what the deal is but I've been in essentially ZERO pain since leaving the ICU. It's been at least a week and a half since I've taken any sort of pain med. I'm not complaining. I asked my doc about this at my appointment last week...I was concerned that there may have been some sort of damage or something??...and he just chuckled and said no pain about the best thing we can expect and while not "normal" it isn't uncommon.

All my wounds are healing and I'm just waiting for the swelling in my mouth to go down so I can start eating real food again.

I can't get too far ahead of myself and I know I'm not out of the woods yet but things are looking pretty good. I still have a long way to go, especially if we do radiation. But I'm very grateful to be home and even more excited that I can eat soft solid food as long as I can tolerate it. It's getting boring though but I know it's just temporary.

I have an appointment next Tuesday with my radiation oncologist where we will discuss the pros and cons of radiation for my situation.

Be Well,
Josh

Thank you for the update. I thought of you the other day and had NO idea how I'd find your thread. Then today it was just right there. Glad you're getting good news and hope things get better and better. :flowerforyou:

I've been thinking of you as well, ever since I read your first post. It's good to know you're coping with all of this craziness, I can only imagine how bizarre it must all be for you and your wife. Looking forward to additional updates, and wishing you all the best in the meantime. Thank you for sharing your experience.

michellekicks

So happy to read your update! Great news. Enjoy the little things...

trenee35

Josh, I've been reading your posts. I am keeping you in my prayers. You will get through this and you will be stronger than when you first entered the fight. Thank you for keeping us posted.

links_slayer

I met with my radiation oncologist this morning. As much as I didn't want to be there I really enjoyed meeting with him. He is a very straight shooter, easy going, and has a personality and sense of humor that I can easily see myself getting along with. He had an opportunity to review my case with both my surgeon and a radiation oncologist at the hospital. All three of them agreed that this is a tricky situation. All of the margins of the tumor showed good, clean, healthy tissue (Stage 0). All of my lymph nodes were clean (Stage 0). The only reason they even considered recommending radiation treatment is because the tumor only slightly started to make its way into what they call the extrinsic muscles of my tongue (Stage 4). Had the tumor stayed in the intrinsic muscles of my tongue we would be having a different discussion. He said there are definitely "no brain-er" patients...those that have positive lymph node results or imperfect margins in the excised tumor. I do not fall into that category. But after a lengthy discussion with him we decided that it would be best to undergo radiation treatment. And so I signed the consent form.

The next steps:

- Continue to let my neck and arm wounds heal. These are doing remarkably well all things considered.

- Continue to let my tongue heal and get the swelling under control over the next couple weeks. My chewing and swallowing continue to get better but it is still challenging at times. I am also able to talk a bit more each day but it is very tiresome and frustrating when I cannot get the sounds to come out right.

- Get fitted by my dentist for a guard for my lower teeth in an effort to prevent electrons "bouncing" off the fillings in my teeth and creating sores on my tongue.

- Get fitted for a plastic mesh head/neck/shoulder mask that I will wear during each treatment in order to keep me in the exact same position every time. I'm nervous about this but my oncologist said he could give me a "chill pill" before each treatment. If I am at ease, he is at ease...and he said I will be easier to treat if I am not all worked about about the mask.

- Have a scan of my head and neck performed so they can "superimpose" my MRI scan (from June) with the scan from their machine. This will allow them to be able to tell their machine exactly where and how "deep" they need to administer the radiation.

- Go in for a "dry run" to make sure the mask fits properly and aligns correctly with the machine delivering the radiation.

- Have a feeding tube placed directly into my stomach through my abdomen in the event that swallowing becomes too painful or difficult. They cannot afford to have me lose weight because I cannot swallow, have the mask become loose on my face, and have my head wobble around as a result. He rarely gives his patients and option when it comes to the feeding tube but did say that there have been cases where the patient could swallow and eat during treatment and did not need to use it. Whatever...with all I've been through surgery-wise thus far I think I can handle this. I'm still nervous about it but I know it will be okay.

- Begin treatment. This probably won't start for at least 2 or 3 more weeks because of insurance paperwork and various appointments that I need to go to. It is likely that I will receive anywhere from 30 to 35 treatments over a period of 6 to 7 weeks. Radiation will be administered once daily (Monday through Friday) for approximately 15 to 20 minutes each day. I was given the worst case scenarios as far as side effects are concerned and I genuinely appreciated everyone not sugar-coating anything. It could be downright awful and miserable but everyone reacts differently. Time and time again I have been told that I have my age and my general health in my corner and that I am ahead of the curve with everything so far. Maybe there is some glimmer of hope that I will be on the less severe end of the side effects but only time will tell.

- Begin recovery. I was told that I will likely start to feel "better" approximately 2 weeks after my final treatment. Approximately 4 to 6 weeks after the final treatment is when most patients start to "feel like themselves" again. Again, these are just generic timelines. Could be longer, could be shorter.

From the sounds of it this could end up being a far cry from a walk in the park and honestly I think I am more scared of this than I was for my surgery. The first half of treatment is usually much easier on patients than the second half. Side effects include sore throat, sore tongue, hair loss, dry mouth, thick saliva, skin irriation on my neck/head, fatigue, and loss of taste. Some of these (like taste, for example) can take longer to reverse but over time they should come back although I was advised that some foods might never taste the same again.

I wish I could snap my fingers, make all of this go away, and get back to normal. But life doesn't always care what we want and will throw us a curveball from time to time. I have an outstanding support system and a never-give-up attitude. There is absolutely 0 doubt in my mind that I will make it through this no matter how difficult it will be.

Thanks for Reading and Take Care,
Josh

vmpera

Wow! I am really sorry to read this. I wish you nothing but the best! Positive attitude goes farther than people think. Positive energy your way!

Ely82010

Josh, I know that it will not be easy and you have the right to feel scare because you are human after all; but a very tough one. Never give up, you will make it, and some day all this will be part of your memoirs.
This is a poem that has helped my husband and me when we were swimming in rough waters. I hope it helps you too:

DON'T QUIT

When your luck is down
And your world goes wrong
When life’s all uphill
And the road is long
Keep your spirits high
For through thick and thin
You must carry on
If you are to win
Never mind if things
Hold you back a bit
You’ll come out on top
But you mustn’t quit

Author unknown (at least for me)

whitebalance

Josh, congratulations on getting the tumors out. Great news that the surgery was so successful. With the attitude you bring to this, I think you're in great shape to power through the radiation treatment and continue taking your life back after kicking cancer's *kitten*. All the best to you and your family. You're all still in my prayers.

marciebrian

Josh, I have thought of you so often and mavel at your bravery. Thank you for keeping us updated on your progress and there is no doubt you will have a full recovery and live a wonderful life with your family. You are in my (all of our) thoughts and prayers.:flowerforyou:

madworld1

I will be keeping you in my thoughts and prayers.

kkveggie

You are so strong, you've got this. Wishing you all the best with everything you have faced and are about to face. Lots of love

beachgal0626

Josh, those of us who responded to your initial post about your cancer really appreciate these updates -- and your willingness to provide them! You are in our thoughts and prayers -- you have a "second support system" with those of us here on MFP who are total strangers! Keep up your great, positive attitude and God bless.

AlbaAngel25

i will keep you in my thoughts and prayers. You can and will win this with an attitude like that. *hugs*

Chadomaniac

Some of the strongest people I know are the one that have battled cancer and won! Stay positive! :flowerforyou:

Yes OP you will come out the battle a stronger man . Good luck