Hello Everyone!
Just an update for you. (mostly for me to VENT)
Applied for "emergeny medicade", I understand this WILL go right thru.
The down side is Shands/Gainsville & Sylvestor/Miami will not take me as I am out of their teritory, boundries, county, etc. etc..
Ended up spending a half day getting humiliated and the run around and I may as well throw in wasteing 1/2 tank of gas. (This humbled me and made me stronger)
After getting my third run around AT MY DESIGNATED HOSPITAL I FINALLY GOT AN APPOINTMENT FOR MARCH 29TH AT Palm Beach Cancer Institue, which is on my designated hospitals complex (Good Samaritan Hospital)Is it ironic to be born and die at the same hospital???

Anyway the Dr. looks to be about 30 years old, (no disrespect to him, I'm sure he's a fine Dr.)But this is what my GP warned me about. A doctor who has seen only a few cases, and maybe his first.
When I got home they called and said my appointment was changed to April 2nd. Jokingly I said, can we do it on April 1st??? SHE WAS NOT AMUSSED!
I must call my GP tomorrow and have him fax his "report" and to have him tell Palm Beach Labs to send them my slides and biopsy report.
I'm sure my GP will Rant & Rage and get me a faster appointment.
The only upbeat thing I found was that my " new cancer Dr. wanted all my info before he saw me so he could speak with my GP and go over all diagnostics (for lack of a better word) And they also have all the modern "scanners"
I DO KNOT KNOW.....if this is psycological, but the pain is spreading to the side of my face & neck and my lymph node seems to be growing.
The tumor is definately hurting more and I did not eat Friday and Saturday.(did drink soup late last night). Well, I waited 9 months, so what's another 9 days?????
Any how,I can't wait for his Dx & Tx and staging, and I wonder if He will take a Team Approach. This will determine my getting treatment or not.
I know you are ALL behind me, but I really think this is to far advanced.(no future triping here, just the facts)
Anyway, it hurts to chew as my teeth rub on the tumor.

Can someone recomend any over the counter Medicines.
Weed, liquor, beer and coke are OUT OF THE QUETSION, EVEN THOUGHT THEY ARE A HEART BEAT AWAY.
When I Stand Before GOD, I Want Him To See HIS MIRACLE OF MY SOBRIETY.

lOTS OF LOVE AND PRAYERS TO YOU ALL, PeteyB

BLESS YOU PETEY,YOUR SENSE OF HUMOUR AND BEING SO POSITIVE WILL GET YOU THROUGH GOOD LUCK AND PRAYS YOUR WAY ....MAZ

Good for you, Petey - With your courage, sense of humor and your "take-charge" positive attitude, I just KNOW you will FIGHT this thing! Keep on keeping on!

Petey,

It always looks and feels hopeless just before the treatment starts. You're still dealing with the shock of it and...you are not yet in treatment and moving towards a positive outcome. You will soon start feeling better mentally and you will get more comfortable with your diagnosis as the treatment begins. Hang in there, keep your sense of humor and you will be surprised how after some time, it will not all feel hopeless. This should be survivable so please choose a long life with your supportive family and friends. We will all be here to stand beside you, I promise you that.
All the best and keep us informed and chuckling.

See if your docs are consulting with a tumor board.

All the best,
Rob J.

Petey.....you hang in there, buddy. It's gonna be better when you have a plan and a team to look after you so that you don't feel so alone and so rudderless.

I know that many folks on this forum will have better suggestions for your mouth pain, but one thing to try that is easy and available is to swish equal parts of an antacid, like Maalox or something similar, with liquid Benadryl. The Maalox soothes mouth sores, and the Benadryl numbs them. It also numbs everything else too, so that you can't taste for a while, but it does help you to feel more comfortable for a while. Give it a try.

And I want you to keep writing your feelings. You are close to finding the solution......and it is NOT in a bottle or a smoke, and I am proud of you! You are in a bad place in your life, but look at you!!! You are triumphing in soso many ways that you are a beacon for the rest of us. Please let us support you, and walk with you on your journey. Don't you dare give up!! There are too many people who care about you, both in your home, and around this country.

Petey B- I was totally in your shoes right now back in Febuary. It is so hard when the tumor is that big and you just feel like total crap. I am so sorry. I feel ya. A lot of the pain you are feeling is because the tumor is causing ulceration and swelling in your tongue and also it is pressing on nerves that are connected to other areas of your face and head and neck and your glands are freaking out because they want this evil cancer out of your body. It hasn't neccesarily spread there. My gland on my right side was swollen too and on the MRI the rad oncologist thought it was bad news but it turns out after they took them all out during surgery they were all clear-- they took out 48 nodes out of my neck....So yes I felt the exact same way-- just miserable and I still had to finish up work too. Just try and stay as nourished as you can and definitely get some decent pain meds from the Docs you see. Any of them can prescribe them for you as you get different appts. Just let them know you are in extreme pain. I went on the fetynyl patch because I had to wait 3 weeks to get surgery and I still had to pull myself together at work when all I wanted to do was curl up in a corner. I know - you just want to some relief right away.

Hang in there There may be things they can do for you to make the surgery less drastic. Ask about them inserting the radiactive threads into your tumor first to shrink it before surgery or chemo and radiation to shrink it down. Maybe it is an option maybe not. They were considering doing it with me but decided that the way the tumor was growing (from my sublingual gland across to the back of my tongue) they didn't think it would benefit my particular case because so much damage had been done.

So I now this is all just crazy to go through- the not knowing the wainting for appointments ect. impending surgery treatment. The thing is that you owe it to yourself to just give it a shot. Its a tough and rough experience but any pain you feel in treatment is going to feel better than just succombing to the disease. Life will be different but you will still be able to get pleasure and enjoyment and fufillment. Maybe eaing will be different but if you want to eat somehting you'll figure out a way to do it

You will still be here for your wife and kids and they want you here. I just know that they do. You mean the world to them.


CAncer totally sucks but you will see the people closest to you TRANSFORM. It is amazing. You say your wife isn't a caretaker. Whatever. She lvoes you and will do anything to keep you here on this earth.... you just wait and see how many people come to support you-- you will feel very loved.

I kind of thought the same thing about my hubby- that he wouldn't be up for taking care of me... He likes his free time ect-- but when it came down to it he absolutely rose to the challenge. We had a very carefree newly married life until this struck us. We weren't too serious about anything-- I defintiely took care of him more than he took care of me but once we had to face the possibility of death together our relationship transended to the next level and it had been amazing

If there is one gift a life threatening disesase will give you its clarity on who and what is important.

Don't give in- I know it is hard when it seems so overwhelming and that the treatments are goig to be intense but you can do it. Mind over body.

Just like karate and the boxing ring-- get in and fight. You could have another 30 years of life and good times. It would be worth it. So worth it. I promise you.

Petey,

I am here as I told you before...Funny you mention the age of your Dr. I too have what appears to be a very young Dr ( like doogie howser LOL ) ..Believe me one of the 1st things I asked him was if he was even old enough to operate on me.LOL He assured me he was and had done a number of these and one that week. His partner who did the surgery with him, also was young and I met him the day of surgery and also questioned him....My Dr laughed and told his partner "she likes to ask that question" I will tell you they were WONDERFUL !!!! The most comapssionate Drs I had ever dealt with ( cept those At Shriners Chidrens Hospital) I went to Boston and while I have the Utmost respect for those Dr ( who were older as well) I would 150% prefer my care where I had it . SO the question to ask is how many of these he has performed. You can barley see my scar and I am only 6 weeks out . I know you are scared , but you can do this and I believe your wife will step up...Lord knows My husband did. We do what we have to to get through these things ..it like survial instinct. So take a deep breath only a few more days and you will have a better idea of what is going on and you can prepare ..sometimes the unknown is the hardest ..Always here and sending HUGS !!

Shar

Hello everyone.
I just wanted to give you an update, though there is no real update. I had high hopes that I would get medical help, but I

Petey,


Hang in there ..if you have to fake somthing or whatever hell do it .....I am talking illness.not lying about assets cus that can come back to bite ya in hte butt. I am here and willing to try and do as much research as I can ...call write do whatever you can ..eventually someone will do somthing I believe it ! Let me see what i can find out form here !


Shar

Petey,


Hang in there ..if you have to fake somthing or whatever hell do it .....I am talking illness.not lying about assets cus that can come back to bite ya in hte butt. I am here and willing to try and do as much research as I can ...call write do whatever you can ..eventually someone will do somthing I believe it ! Let me see what i can find out form here !


Shar