Soooo....I Have Cancer

piersons

God Bless you and your family. You will get through this.

"What Cancer Cannot Do"

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

links_slayer

Recovery from my feeding tube procedure last week Wednesday is going well I guess. Thursday and Friday were relatively tough pain-wise. I suppose pain might not be the best word. It was more sore than painful. I never realized how often we use our abdominal muscles during everyday tasks. Breathing, yawning, coughing, sneezing, laughing, crying, walking, getting in and out of a chair, showering, bathroom activities, etc.....and that's probably only a short list of things that aggravated the surgery site. The good news is that I have been essentially pain-free for the last 2-3 days with the help of 800 mg ibuprofen 4 times a day. There is a bit of oozing/draining occurring but we've been told that this is not uncommon but need to keep an eye on it to make sure it doesn't get worse.

Yesterday I learned that I can "flush" my feeding tube all by myself. This is something that needs to be done at least once each day whether I am using my tube for feedings or not. I am not sure if I will be able to actually feed myself - if needed, of course - but I feel like I should at least try before the time comes. I know she would do it in a heartbeat but it would be a royal PITA for my wife to come home once or twice a day to feed me. If I need to have all of my food through this tube it will be 6-7 cans per day (something like 2300 calories). Based on the "aftermath" of my previous tube feedings it seems as though spreading these throughout the day as much as possible will be the best way to go.

Last week Friday I had an appointment to get my mask made for my radiation treatments. I was still quite sore from the feeding tube surgery so this was not a very fun appointment from that standpoint. The table I had to lay on was about as soft as our driveway. I rested my neck on this mold thing that forced my chin to point to the sky. They also put this board under my feet with 2 of these metal-springy-rope-type things attached to 2 handles. The idea for this is to bring my shoulders down as far as possible so the radiation "beams" don't hit my shoulders on their way into my head and neck. My doctor said that my neck is nice and long so it probably wasn't as critical to get me into this device but we decided to do it just to be safe. He also needed to find a way to push my tongue down and keep it down during my treatments. The solution to this was a 60 mL syringe (sans plunger) that's ~1" in diameter. This will be put in my mouth before each treatment. He looked at my tongue while the syringe was in place and said it looked "beautiful." By keeping my tongue depressed he is hoping that the roof of my mouth will be spared from a bulk of the radiation.

Now comes the mask-making. While all of the above activities were going on my mask mold was taking a bath in some pretty hot water. When the time came they took it out of the water and placed it over my head, neck, and shoulders. It was hot. Not burning hot, but still pretty hot. They placed the syringe tube in my mouth while the plastic was still very pliable. Then my face was covered in some towels that were wet with lukewarm water to help it cool. The holes in the mesh appeared to be a bit smaller than the diameter of a pencil so I could still easily see through the mask and breathe through my nose. However, it found it best to keep my eyes closed. The pain from my feeding tube was enough to take my mind off the mask hardening and shrinking around my face but closing my eyes and going to my happy place sort of took my mind of both of those things for the time being.

With the mask completely hardened they literally bolted it to the table. That was pretty nerve-wracking but I didn't feel trapped or claustrophobic at all. It was pretty weird not being able to move at all though. After I was bolted in they started some scans. They lasted for what felt like about 5 minutes although I really have no idea how long I was in there. Oh, I also got my very first tattoo, too! A small, red dot about 3 or 4" above my sternum. They will use this as an additional alignment point (there are at least 3 or 4 on my mask) before they start each treatment.

When all of that was said and done we met with my doctor for a few minutes to talk about some questions we had. We learned that I will receive anywhere from 30-33 treatments in total. He also explained how this particular form of radiation treatment works. He used the following analogy: Imagine 20 people standing in a circle in a room. Each of them have a LED pointer light and are told to point their light at an "X" in the middle of the room. There will be one relatively large and intense dot in the middle of the room that gradually - but quickly - reduces in intensity as you move away from the "X". The outer edges of the areas he intends to treat will be monitored to see how much radiation they have received over time. Once those edges have received his targeted dose he can be certain that the other areas - the more nasty areas - have received much more than that (see LED light description above). I will likely start treatment by the 26th or 27th of this month. They said it might be sooner than that - it all depends on how long it takes them to review the scans and come up with a treatment plan.

On Saturday my wife and I gathered with my mom's side of the family celebrate and remember my Grandma. We had a very nice private room at her favorite restaurant. It was quite the emotional couple of hours to say the least. I don't think I have ever seen my Grandpa cry before Saturday. It was tough to see. My aunt and my mom each did a few readings and then my cousin's wife sang an outrageously beautiful version of the Lord's Prayer. There's no doubt it's going to be hard for my Grandpa for a while. I don't know that you ever get over losing someone that you've been married to for 62 years.

Other than that I've just been hanging out at home doing as little as possible to let myself continue to heal. I finally got a bit stir crazy for the very first time yesterday. I got out of my chair a few times just for the sake of getting up. My legs appreciated it a great deal but my abdomen was telling another story. I'm also trying to eat as much as possible until I start radiation. I've been told that "bad calories" do not exist for me anymore. Well, at least not until I'm fully recovered from treatment.

Thanks again for taking time to read this longer-than-anticipated post.

Take Care,
Josh

BeachIron

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

^ This, Josh, this. And reading your new posts, it's going to continue to suck for a while, but you will get through it. Stay strong.

whitebalance

Josh, thanks for the update. Sorry for the loss of your grandmother. Glad to hear you've cleared another couple of hurdles. It is amazing how much we use our abs for. I had a little 4-inch incision made in mine years ago, and I couldn't believe everything it affected.

A "practice feeding" sounds smart. Not fun, but you don't want to be trying it for the first time when you really need it, right?

The radiation process you're describing kind of blows me away, thinking about the precision involved. So does your attitude getting through it all. I don't really know how I'd handle having a mask over my face bolted to the table. I guess you just do what you have to do, huh, but you're a strong guy in more ways than one. I agree with the others who've said beating this will make you even stronger.

Hang in there, man. More prayers sent.

beachgal0626

Thanks for the update, Josh -- stay strong and positive! Also, the get-together to remember your Grandma sounded beautiful -- hugs to your grandpa and to all of you.

MN_Nice

*hugs!* my friend had cancer and we both swear hugs cured it, he had stage four lung chance and has been cancer free for 7 years :)

MyaPapaya75

Thank you for sharing your story, well wishes are being sent your way xoxox stay strong!

corinnelapolt

Thanks for your post, such courage to put it out there and I despite how scary all of this might feel at the moment, I can sense the tremendous strength tucked there inside of you. Treatment has come a looooong way today and miracles happen every day all around us. God bless, super positive energy being sent your way!

Momjogger

So sorry you are going through all this. Some day it will be a story you tell your kids, but for now, take care of yourself.

Nenny1985

You can do this! Thanks for sharing your story! All the best with everything

JenToms80

You have an amazing attitude, all the best with evereything

xx

Mitzigan94

>>hugs<<

gypsyrose64

Just checking in for any updates. Hope your holiday is filled with love, support and healing.

PHr34k0wt

Sending all kinds of positivity in your direction! Here's to a hell of a story to tell your great grandchildren

links_slayer

Just checking in for any updates. Hope your holiday is filled with love, support and healing.

Thank you for the kind words :flowerforyou:

Things are going about as well as we could hope.

I'm not sure when I last posted in this thread but here's the Cliff's Notes version:

- Radiation started September 3.
- It was awful (it's hard to imagine that the 9+ hour surgery + the 7 days in the hospital was going to be the EASY part of all of this). My mouth was covered with sores and I had the thickest phlegm in my throat constantly....which caused me to routinely choke and gag....and made it almost impossible to sleep for more than a few hours at a time.
- Had to rely on my feeding tube 100% for about 6 weeks since I couldn't chew or swallow anything except for a bit of water each day.
- Radiation finished October 14.
- Follow-up w/ surgeon in early November, he was VERY pleased with progress.
- Feeding tube out on November 18.
- Follow-up w/ oncologist November 21, he was also very pleased with progress.
- Back to work November 25.
- CRUSHED Thanksgiving dinner.
- Follow-up w/ ENT doc (who initially diagnosed me back in June) December 12, said things look great.
- Swallowing is still a bit of a challenge at times as is chewing.
- I still can't feel anything on the right side of my tongue/mouth but hopefully that will get better over the next few months/years. So right now it's all on the left side of my mouth which makes my jaw get tired really quickly.
- PET scan scheduled for January 15, and follow-up w/ ENT to go over results on January 23.
- Will likely have follow-ups every 4-6 weeks for the next year or so and then move to every 8-12 weeks.

martymum

I have just read this and then skipped to your update...so pleased everything is going well and you seem to be so positive big (((hugs))) from a complete stranger and I hope you continue to heal well both physically and emotionally

focuseddiva

Your progress sounds great. I work in the cancer field -- and cancer is not an automatic death sentence any longer. In many cases, it's treated like a chronic, manageable condition. And new advances in cancer research are made all the time. The treatments are really getting pretty great. Lots of genomic testing -- think precision versus power. Sounds like you have a good treatment team and you're doing everything right. You're young -- you can handle this. You ARE handling this. Hat's off to you and thank you for your bravery and courage in posting here. :-)

Mangopickle

Saying a prayer to St Philomena for you right now. Much love from Tennessee.

wanttobeskinny1212

Awesome attitude you will get through it
x

haroon_awan

Your progress sounds great. I work in the cancer field -- and cancer is not an automatic death sentence any longer. In many cases, it's treated like a chronic, manageable condition. And new advances in cancer research are made all the time. The treatments are really getting pretty great. Lots of genomic testing -- think precision versus power. Sounds like you have a good treatment team and you're doing everything right. You're young -- you can handle this. You ARE handling this. Hat's off to you and thank you for your bravery and courage in posting here. :-)

That's great to hear!

OP; you have outstanding bravery. It's little things like this that really get my though my day. So from the bottom of my heart I thank you for posting and wish you well.

laceyfowler

Thank you so much for sharing your continuing story with us! I can only imagine how difficult this has all been for you, but it sounds like you are healing up very well! It's great that you're able to be on here and share your struggles as well as your triumphs with all of us.

I'm sending lots of positive thoughts for quick recovery your way!

alexandriax03

This scares me because at my last dentist appointment 6 months ago, the dentist said I have white spots on my tongue. Then proceeded to ask if I smoke or chew tobacco… I have never done either. So he said it was probably nothing but they'd keep an eye on it. I have my next check up tomorrow……. really nervous now!

Praying for you and your recovery!!

disneygallagirl

Glad you felt you could post here for support and just to get it off your chest...I think you are very brave and positive. ..and your doctor's sound great and positive...all of this makes me believe you will kick cancer ' *kitten*. Sending positive thoughts your way. Fight, fight, fight...You can beat it!

A1345

Hi,

I am so sorry for your news. I can't imagine how you must feel. I will pray for you and your family. I think it is good that you can share in the group. Talking always helps.

Take care,
Ann

Momf3boys

I am a 3 year cancer survivor and I know exactly what you felt when you heard those infamous words, "you have cancer". I'm so sorry that you have gone through all of this but it sounds like things are going well for you now. Keep your chin up, stay positive and keep fighting the fight. I hope that you continue to heal well and that you can soon get back to a normal life (although after hearing those words, life is never really normal again). Many hugs and prayers for you.

Mia_RagazzaTosta

I look forward to what 2014 brings you, pal

scythswife

[/quote]


I'm not sure when I last posted in this thread but here's the Cliff's Notes version:

- Radiation started September 3.
- It was awful (it's hard to imagine that the 9+ hour surgery + the 7 days in the hospital was going to be the EASY part of all of this). My mouth was covered with sores and I had the thickest phlegm in my throat constantly....which caused me to routinely choke and gag....and made it almost impossible to sleep for more than a few hours at a time.
- Had to rely on my feeding tube 100% for about 6 weeks since I couldn't chew or swallow anything except for a bit of water each day.
- Radiation finished October 14.
- Follow-up w/ surgeon in early November, he was VERY pleased with progress.
- Feeding tube out on November 18.
- Follow-up w/ oncologist November 21, he was also very pleased with progress.
- Back to work November 25.
- CRUSHED Thanksgiving dinner.
- Follow-up w/ ENT doc (who initially diagnosed me back in June) December 12, said things look great.
- Swallowing is still a bit of a challenge at times as is chewing.
- I still can't feel anything on the right side of my tongue/mouth but hopefully that will get better over the next few months/years. So right now it's all on the left side of my mouth which makes my jaw get tired really quickly.
- PET scan scheduled for January 15, and follow-up w/ ENT to go over results on January 23.
- Will likely have follow-ups every 4-6 weeks for the next year or so and then move to every 8-12 weeks.
[/quote]

So glad that things turned out so well for you. I pray that they continue to improve.

dcjackson50

Great News ! You are very brave and courageous for sharing your story ! Cancer is scary but as others have posted,....it is not always a death sentence, so for that reason alone, your story is much appreciated ! You have given hope to a countless number of people I'm sure !

God Bless

emmietoby

hoping that all goes will for you. i ,also , had cancer ( of the lung) had a peice of it removed. that was in 2006 . so far i've been ok. hoping that you will let us know how you are doing keep strong!!

arabianhorselover

Wishing you all the best in your struggle. Take Care.