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

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

NJShore said:

Feeling Jack..

"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

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

fishmanpa said:

It's been a while....

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" 

 

 

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

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. :-)

fishmanpa said:

Da Shore

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" 

"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

katenorwood said:

Not easy

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

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.

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 said:

Okie dokie then!

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

p

Prayers and good wishes for your surgery