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Ok... this Beast is starting to hurt for real :(

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hey folks,

On Monday, I visit the dentist to have a tooth extracted and a small cavity filled. That along with previous exams, cleanings and flouride treatments will give me dental clearance for radiation treatment.

The journey officially starts next Thursday with surgery to remove the tumor, do further biopsies and another laryngoscopy. As of yesterday, I'm off all meds and supps with the exception of my beta blocker as per Dr's orders. With this surgery and further testing/biopsies, the team will be able to truly assess the situation and put the treatment plan together. Hopefully they'll determine the primary site... that's key here. 

This week has been particulary different and difficult as I'm definitely feeling sick. It's a distinct and different feeling that has come over me the last two weeks. My neck aches (3 or so pain level that tylenol barely touches) and my energy levels have dropped dramtically. I do Ok in the mornings but by afternoon I'm whooped. The tumor has without a doubt grown or is extremely angry and irritated. I can feel it from the lymph node in my neck to just below the back of my ear. Although I'm not having any swallowing issues, I'm feeling discomfort and pressure with each swallow along with what feels like a piece of food stuck in the back part of the left side of my mouth/throat. It hurts to blow my nose and I had a little spotting of blood in my left nostril the last couple of days. I had attributed this to psychological feelings but no... it's real. I'm feeling pretty yucky :( Guess I better get used to it eh?

"T"

 

katenorwood
Posts: 1812
Joined: May 2012

T,

Your journey is beginning.  But saying this when issues arise, I'm like an old mother hen and suggest you check with your clinic on these issues.  You could have picked up a bug.  Good luck next week with everything.  I hope they can determine the primary if possible.  But regardless you're in the fight which is half the battle.  I'll be thinking only positives for you, and sending out prayers to guide your surgeons hands.    Katie

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

T

Today is the DAY.   Thinking of you today and hoping the surgery goes well.

Sending prayers your way for the best possible outcome and a quick recovery for you.

We will wait patiently for updates on you.

 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Thanks Ingrid,

Yep... I'm leaving for Baltimore in about 40 minutes. The enormity of this surgery started sinking in a couple of days ago. I may have been calm and collected and matter of fact on the outside but inside my guts have been churning. This is major surgery! By this time tonight, "Jack" will be out of my neck but not totally out of my body. I'm prepared for the worst but hoping for the best :) 

All going according to plan, I'll be home tomorrow afternoon.

I'll post an update then.

"T"

josh r.
Posts: 180
Joined: Oct 2010

Hi T,

You have an entire "nation" behind you. All the best, josh r.

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

in Oct. of 2012....I knew something was wrong, but didn't have a clue as to what it might be (I thought it might be something with my heart because my breast bone hurt....I later found out that was "refered pain" from NPC which is where my cancer was found)....when I finally got into the ENT the 5th of March, after many trips to my GP over the lymph node in my neck...I was definately running out of gas before the day ended....very tired.  However, not in pain.  The ENT did the needle biopsy on the node with a dx of cancer.  The biopsy really pissed off that node, and it took on a life of it's own...growing rapidly and hurting a lot!!  I was thinking "sure, get the node all PO'd and then everybody take your sweet time getting my treatment plan going"....I was a wreck over the immense growth of the node.  And then another node appeared on the other side of my neck!!  As it was I didn't start any treatment for another 5 or 6 weeks, and by then I really was starting to feel pretty crappy.

The difference of where you are now....on the verge of getting treatment....and where you are going....actively fighting "Jack"....regardless of how bad you feel, you still feel better just for being able to join the battle instead of being on the sidelines.  It's not growing as fast as you imagine, but it hasn't stopped growing.....it's going to be ok, tho....You're this close _____ to starting the fight.

p

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

T,

 

I never felt sick, or pain, or yucky prior to diagnosis.  My cancer fooled my body by playing friendly and seducing my good cells to work stealthily from within.  I just know my immune system would have kicked in if they hadn’t been asleep at the wheel.

 

Be that what it may, you truly have to get your self psyched up (or your case jazzed up) to fight Jack.  Jack plays dirty and you have to play smart.  By this time next week a big part of Jack will be in pathology and any remaining Jack will be an easy target for your eradication team.

 

Do as Katie said, if you are sick, in pain or anything out of the ordinary let your team know, it is imperative to openly communicate with everyone.

 

Best,

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Thanks guys...

I'll send a note off to the team Monday morning. I kind of get the feeling, like Phrannie said, that "Jack" knows what's coming. Even now, as I write, after being up for most of the day, I'm a hurtin' pup :( I have no fever or any other symptom of illness other than a constant dull ache in my neck, a feeling of fullness, clogged ear and left nasal passages and a fatigue unlike I've felt prior. Two weeks ago at Johns Hopkins I felt pretty good with the exception of a little fatigue. Maybe the fact that three doctors squeezed, groped, prodded, examined and and otherwise invaded the privacy of "Jack" that he's decided to fight back. 

I definitely agree in that actually being "in" the fight, as opposed to on the sidelines waiting, will be beneficial to my psyche and physical well being. The one emotion that hasn't gone away throughout this ordeal is anger. I'm still really pissed at "Jack" for coming into my life. I've gotten over holding onto anger many, many years ago. Hanging onto things like that are not good for one's soul. However, in this case, I think it's healthy to hang onto wanting vengence againt this intruder for messing things up. I won't let up until he's gone!

"T" 

 

 

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

Your immediate enemy is not Jack--it's the high-tech barbaric treatments to get rid of Jack.  Jack is immune to your anger--he might even feed on it.  Dont' let Jack do that.  Be cool, be rational--the more you fight against where you are right now, the more you divert energy away from kicking Jack's ass.

Mike

 

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Just wishing you well mate and that the pain and fatigue subsides. I've been taking meds for my pain which seems to be shrinking since chemo and radiation (3 weeks into radiation and 2nd weeks into chemo) Doc told me the pain in the left ear was referral pain and would likely go down when Jack gets zapped.

We are as mad as hell and we are not going to take it anymore...I'm with you Mr T

Michael

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

"T",

Dan started to drop weight in May. I swear he slept the entire month of July. In August everyone kept telling him he looked great, they noticed his weight loss. I looked at him and said it doesn't look like healthy weight loss your eyes  look drawn... He continued to sleep during the day, everyday.. We were so busy preparing for my sons wedding, relatives, and a surprise birthday party at our house, and Summer company ( we do live at the shore!) that we just didn't put things together until September, when our GP was in vacation! Hence, we learned in October. By then the tumor was more than noticible... Fortunately most didn't notice, as it was the best kept secret until after the happy events were over.

But I second everyone else, if you feel pain or significant changes - call your doctor, he gets paid a small fortune to listen to you!

Kari

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

did not come out as easy as they should. It was like my tongue was twisted or stuck.  B words like "breakfast" or "better" and words like "continental" just did not feel right.  I even told my wife it's as if I had a mini-strok in my tongue.  Then in August I started to feel pretty rough as in tired, really tired and cold.  Now you have to know me, when I come home in summer to our non A/C house which it 80' inside and I am under a blanket cold, something is wrong.  Wife said it and I agreed.  I was so exhausted I just knew it as mono ...until my left lymph node swelled up...and you all know what happens from there.  2 weeks of antibiotics, another 2 weeks of a different antibiotic, then ENT, then biopsy, dx and first day at tx center.  I was officially dx October 20, 2012 and began my first loading dose of Erbitux and rads by November 20.

 

But T, the good news is you are that much closer to getting back to doing what you love to do and enjoying live with friends and family...this will be one tough boot camp...but you will pass and be enjoying the good things with a new found appreciation soon...then you can come visit me and my family in the great state of Idaho and see some real beauty!! :)

 

Best,

 

Tim

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

My dad had symptoms 10 months before he was diagnosed. Sore throat, hurt when he swallowed and swollen left lymph node. It took 10 months before they diagnosed him. The worst mistake was actually that doctor said (when they did ultrasound on his neck and saw nothing unusual) that dad should just observe himself and if anything changes he should get back again. But the node was still there, sore throat too... so his MD said it was GERB or acid reflux and that swollen lymph node could be related to that... Yea right. Then after few months when nothing changed he got back to ENT and he saw something unusal in his neck, so the biopsied him and.... we all know what happens from there... He was dx on May 20th 2012 adn his treatment begun in the end of July. So two months before things started to happen... In the mean time his neck was really swollen, his lymph nodes grew and you could see and feel how big the left side of his neck was. His voice changed a bit. We could notice it, because he spoke like he had something inside and did not swallow it. Then, just a week before his first radiation and chemo started, he felt another lump on the opposite side of his neck. So, the cancer definetelly spread. So, yes, he too felt his "Jack" showing his ugly head. We were much relieved once that tx started.

Best to you!!

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Kari,

I'm a Jersey Boy originally, Exit 4,  so I know "da shore". During the late 80's and early 90's I performed a lot along the coast. LBI to Cape May. There was one place in particular that I enjoyed the most. It was called The Waterfront in Somers Point. I had a duo back then and we played out on the deck every Thursday evening for several years :) 

The tumor is definitely noticable at this point, especially since I lost about 20 pounds since November. It looks like I have a case of the mumps on the left side of my face. Fortunately, they'll be cutting it out in a few days. While I'm not looking forward to the discomfort of another surgery, I am looking forward to getting this thing out of me. I'm thinking I want a picture of this thing before they send it off to pathology. I want to see what it is I'm fighting. I'll ask my surgeon on Thursday ;)

"T" 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

"T",

The Waterfront, is now the sail. It's just about a mile away.. I am in EHT.. Small world. Hey, don't you miss the smells of low tide? 

i wish you the best in your surgery, getting it out is the first step but you'll be surprised when you are done with the process, the summer will be waiting for you! 

And, our surgeon is giving us pictures but not til the next visit next week... He had to get them off his phone!

you are in my prayers,

Kari

Laralyn's picture
Laralyn
Posts: 436
Joined: Apr 2012

My treatment started relatively quickly after diagnosis, but some pain had definitely started. I felt an ache in my upper mouth, radiating back to my teeth on the left side. The cancer was in my left tonsil and soft palate. There is a positive side to it though: you KNOW when the treatment starts working. For me, I had two clear signs: the pain started to die dowm, and I also could feel the swollen lymph node and the tumor on my palate start shrinking. You're almost there! Look ahead toward getting rid of Jack altogether. :-)

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Hey T,

 

I'm glad to hear some traction comes sooner than later. Obviously, it is more than stress alone. Be strong and do not let Jack get control. U da man, so no anger over it, just save and convert to strength as you will surely need it on positive thoughts going forward. Think about the best gigs on stage, bending those chords and having the crowds going wild. Put the energy into the air guitar! don

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Don,

I see you got a little beat up this past week. Glad to see you're off the canvas and back in the ring! As a guitar player, I have calluses on my fingers. The more you play, the tougher they get. Even so, after a couple hours of playing or practicing my fingers start to get sore. I have the feeling treatment is going be a little like that. I'll hang tough for a while and then it's get to me. But like resting my fingers, a break on the weekends will help me to get through the next gig.

Here's to practicing and building those calluses!

"T"

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

"T",

you are in my thoughts and prayers, particularly tomorrow. I know you will do very well.. You've got your fight on! :)

tell Marcia if she has a moment to let us know how you are doing in a few days, we can get back to fur balls, and turkey wobblers, and not worry as much.

Be strong! Be well!

Kari

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

It slices, it dices.....

Good luck today bro.... hoping that later today you and Jack's relationship will be separated....

Breaking up is hard to do, but Jack needs to pack is sh.it and go.....

Let us know what's up later when you feel up...

Best ~ John

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

You're on the way to seeing the last of Jack!!  Tucking you into my pocket today....

p

hwt's picture
hwt
Posts: 1843
Joined: Jun 2012

Prayers and good wishes for your surgery

Grandmax4's picture
Grandmax4
Posts: 579
Joined: Dec 2011

is long with many a winding turn, that leads us who knows where, who knows when, but, I'll be strong~~~~~ lay back enjoy the ride and the drugs...I felt amazing when I came out of lala land, but reality set in ...it's doable and you're a positive person...let's get this party started!!!

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