The two new bumps were tumors / enlarged nodes.

They ordered a "boost" of rad. in the two areas & chemo and later surgery to remove necrotic tumors.

They put two "objects" on the new bumps during Rad TX.

I guess they really nuked it good as my tongue is tingling, feel slight sun burn & dry mouth and the bump on the left side of the neck; right on the scar is visibly swollen and really hurts.

It is affecting head movement and almost to the point of needing meds.

Is this normal because of the boost or is this "A Bad Day at Black Rock?"

Petey: I'm so sorry you're having to go through all this! Hopefully, you'll be feeling better very soon! I find it most helpful that you post your specific 'feelings' following your treatments, so that others can read and know something of what might be 'expected' vs. an uncommon symptom! Just curious, are the 'necrotic' tumors IN your nodes, near your nodes, where?

Hello Emmylou

The tumors are not necrotic yet. They are growing. They are hoping the rad & chemo will kill them.

In or near the nodes I have no idea. They removed 44 with 5 positive.

I have a bad feeling about this. It feels like they are bigger now than this morning and I have a hard spot right on the jaw bone that was not there this morning.

I am having my daughter take a picture in a minute. Then I will take one picture everyday to see facial changes. I told her I want to monitor the changes in my features through rad & chemo.

I have asked my wife not to mention the new tumors to our kids. No need for chaos and worry until I can not hide the fact if they keep growing.

My question, is this normal?

...Maybe it's just a response to the tx...I'm sure it has traumatized your body, and your body is now rebelling...I'll bet the swelling will subside shortly...my fingers (and toes) are crossed for you! I pray that you get some rest tonight!

The new lump on the jaw bone almost doubled in a 3 1/2 hour period. Went to AA meeting on the beach in Palm Beach. (Partly cloudy / 87 degrees)

I was on the beach from 9:20 am to 10:40 am. I sat under an umbrella with a shirt over my head.

I took a dip in the water (76 degrees), 5 minutes tops

Hi Petey,

After just spending 5 hours at the hospital with my hubbie this Sunday, I came home to read up on current postings.

When we went through the diagnostic process, we were given an army of people to work with. In the beginning I collected more biz cards than I knew what to do with. Eventually, I typed up all my contacts on one page with a synopsis of who to call for what.

In each area (surgery, RT and chemo) we have a talented team consisting of a doctor, a nurse practicioner and a nurse. We have specific instructions on who to call for what type of symptoms.

During the week I can easily get a hold of anyone I need. Off hours, I have a triage number for each of the 3 areas that I can call with questions...or if any one of a specific lists of symptoms (from a list they gave me) develop I am required to call one of the triage lines.

The triage lines always gets me a call back from the appropriate doc on his team within minutes.

This morning's 7 a.m. call had to do with my husband's fever that was 102 degrees. We spent hours at the hospital. He had blood panels taken and was examined and tested for various things. And, even though there was an attending in the chemo area, our MO wanted us to stay until he could get to the hospital and look at my husband personally.

All in all, this goes down as the 3rd fluke-ish fever that they can not explain. But, they verified his blood panel was good and they checked for various infections...like strep. And, everything came back perfectly.

My husband did not enjoy going to the hospital on his day off, but we do have peace of mind that everything is ok.

Our docs take everything so seriously...night or day.

I understand why you would post here as getting other people's perspectives and reassurances are invaluable.

But, if it were me, in addition to posting here, I'd also have a phone call into one of the oncology triage lines if my husband had something that was doubling in size within the time frame you described.

One of the things that I learned is that even when they don't ask me to bring my husband in for an extra visit, they are better prepared to spend more time with Dan and do more tests on our next visit if I call ahead.

Do you have people on your medical staff who you can reach or who can be paged on the weekends?

Wishing you the best of care,

Petey, it would be very unsusual for two rad treatments to cause you this many issues. Keep in mind that when you lose lymphnodes, things can get backed up in the neck/jaw area as the drainage system isn't working properly. Four years out I still will get some swelling along my neck and jaw if I'm in the heat for to long.

Minnie

Minnie:

Thank You...I awoke this morning and the swelling receded by half, and that is encouraging to me.

Margaret:

Thank You for your support and concern.

I used to be well organized like you. Then I became an alcoholic. I have "pushed away" all the people that love me.

I do not understand what I do. For what I want to do I do not do, but what I hate I do.

I was in deep depression before the cancer and no one understands that it is hard for me to even take a shower or make a can of soup. I have no caregiver. I eat when I am starved into it.

The cancer is scaring the heck out of me, but today, on my 51st birthday my main concern is for the well being of my immediate family who no longer love me and rightfully so.

I am being schooled a Harvard education in humility. Which, by the grace of God, is keeping me from that 1st "sucker drink" today.

Whether it be happenstance, karma, or fate the courts picked a lovely day for the summary judgment on my home.

I must work diligently today to assure that none in my family have bitter tears because of me.

The bitterest tears shed over graves are for words left unsaid and deeds left undone.

It is I that must make the amends, to ensure this never happens.

Besides leaving them with nothing, I detest the thought of the above happening to them. The cancer is just an added befit of the consequences of alcoholism.

My wife asked me if there was something special I would like to do today. My reply was "die".

A punishment to some, to some a gift, and to many a favor.

Cheers, Petey

Petey: Would that we live closer than we do! You have caused me to cry my first tears of the day! I can relate to MUCH of what you're saying. As a recovering alcoholic myself, I too have alienated family members, including my oldest son who has absolutely been the light of my life for 38 years. I haven't had a drink in more than seven months. That is NOT to say that I haven't struggled these past few weeks particularly, just talking myself OUT of going to the ABC store! BEFORE I read your post, that old urging was surely trying to take over. The tears I'm sheding now are for you, also in relief for me, in that I'm sure I won't make that trip to the liquor store today. My constant prayers today are for you! Your courage is awe-inspring! Hang in there, friend!

Petey,

You're tearing my heart out! Please try not to be so negative and if you're really that depressed, ask the damned doctors for some anti-depressants and the name of a counselor!

You know, "things" come and go. Money comes and goes. People don't. You may perceive you're wife and kids as being pissed at you, and they very well may be! But you're here and by the grace of God, you're sober. Make your amends! The love of family is unconditional. It's not an emotion, it's a decision. Each one of us as married people has at some time or other, HAD to make the decision to love because our spouse was human, TOO human, and did something lousey, unfeeling, hurtful or damaging to the relationship. I'm taking it for granted that you're still in your relationship, which means you have opportunity to work on it. Sometimes these horrible things like cancer can actually draw people back together.

Is your wife in Al-Anon? If not, try to convince her to go. We love the sinner but despise the sin. That's normal. We're human. But the trick is to continually and unconditionally love the sinner.

If you feel like talking, or your wife feels like talking, my husband is a veteran of an anonymous group, I'm a veteran on an Anon group, and we're both a team couple of a marriage ministry that helps to heal troubled marriages and marriages on the brink of dissolving. I don't think I even have to mention that I was my Aunt's cancer buddy for more than four years.

And when all else fails.......... pray my friend. The good Lord is here and listening 24/7.
Go to a church, any church in the middle of the day when no one else is there. Scream, cry, plead, get it all out and then leave it there and start anew.

I have great faith in you. We all do. I know what you have accomplished thus far, and I have confidence in all you can accomplish, and so does He. Just ask Him for help. Let Him be your cancer buddy.

Hugs,
Lisa

Petey,
please - you've got to stop the pity party and call your sponsor. And what do you mean that you have no caregiver? What about your wife?

Nobody said sobriety was easy - especially the first year and even more so because you have cancer. KEEP GOING TO MEETINGS, READ THE BIG BOOK, TALK TO YOUR SPONSOR. READ the second paragraph on page 417 (4th edition - p. 449 if you have the 3rd edition).

Talk to your doctor about antidepressants. Quit being a wuss - you can do this! I'm the worlds biggest wuss and I did it - so can you.

Petey,

I have had two helluva couple of days at the hospital...and, my husband is in his 4th week of chemo radiation. I am exhausted, and yet I made the mistake of reading your post prior to going to bed and I woke up in the middle of the night angry as all get out.

Petey, you read and respond to virtually every post on this site. You know that some people aren't nearly as fortunate as you are...some people do not have a choice of living or dying. Some people do die.

Right now, you are being treated at a top medical site because you bolstered up the courage and action to make that happen...and, at no charge. I would say that makes you one very capable, intelligent and fortunate guy.

And, your doctor's aren't trying to talk you into hospice...they are treating you as though you are treatable.

You have got to stop wavering, stop feeling sorry for yourself.

So, you make your own soup...big deal...order some Carnation VHC and they'll deliver it to your door and you won't have to even heat it up.

You need to continue on the path of the amazing man who got himself a top-notch, no-cost medical team.

Make the decision to fight this cancer and stay the course. Once you get through these treatments, you will have a chance to make amends and/or change how you show up in people's lives.

The one thing that is pretty certain is there is a big chance you will get knocked on your ass when you least expect it during treatments.

I don't know of many people who made it through their entire treatment regime without a caregiver or someone to at least drive them to their appointments or pick up prescriptions. My husband thought he would be able to handle this himself, God had something else in mind.

Every day, I choose to sacrifice something big...that impacts my relationship with my children, my own business, my well being...to make sure that my husband gets through this.

I, as the caregiver, rely heavily on neighbors, family and friends on the homefront and at work...as I realized early on I can't do it all.

My view is that this is one short time frame in the grand scheme of life...and I will have a chance to focus on my kids, repair my biz...and, repay the many favors that have been generously sent my way.

If your family doesn't want to be your caregiver (or at the very least drivers and errand runners)...accept that and find someone or some people who will.

There will likely be a time when you are too fatigued from radiation or too medicated to drive safely and that will put you and potentially others on the road at risk.

You seem like a like-able guy, I am sure you have friends. Make sure you line people up as a backup to help you BEFORE you need the help.

And, if you don't have someone to help you track your calories, fluid and medication intake...then, while you are still early on in your treatment, figure out how you are going to do that. It MUST be done. Create a check list, buy a whiteboard or a notebook...do something that is systematic and trackable.

Or, start a blog on this site and we'll track along with you.

I realize the need to lean on others for emotional support. But, Petey, you have a choice to live and you are taking it far too lightly.

If you put all your energy into feeling sorry for yourself...you will have no energy left for what you really need energy for. The treatments are hell. And, I say that as an observer and not as a participant.

My husband went through a range of mood swings when he was first diagnosis. But, that was short lived...once he get on a treatment plan...he made the decision to fight with all he had. I am amazed at the courage my husband shows every day.

It took a lot of courage for you to admit your alcoholism and past problems on this site. I thought that showed a lot of character.

Although, your last post responding to my message showed too much weakness.

Build up your armor, build up your support team and fight this beast and beat it! Because it is quite possible things will get much, much worse before they get better.

Stay the course, Petey! You have a lot of people rooting for you on this site...show us all what you are made of.

Sorry for the late night rant and rave...but, maybe now, I will be able to fall back asleep.

I truly wish you well Petey. I am among the people here who are rooting for you!

All the best,

Petey, One thing is pretty sure since you are fighting cancer--if you want to die, you can. Just quit your treatment. But don't delude yourself that you would be in any way making amends for what you need to make amends for, or helping your family, by doing that. You would not be giving anyone a gift. All you would be doing is giving into fear and self-pity.

Your family needs to have you around to SEE that you can change, through the grace of your higher power and the hard work of really WORKING your program every. single. day. Their attitude toward you may not change right away, even though you are fighting cancer, but it will change if you keep up that work. And keep up the cancer fight too.

Right now, it's about accepting life on life's terms and life's terms are certainly pretty harsh at the moment. But it's your life, and you're being given the medical care to keep that life going. Be grateful for that and treat your life with the respect it, and every life, deserves.

Nelie

Petey, Petey, Petey,

I'm a wife. I thought about how I would feel if I asked my sick husband if there was something special he wanted to do today and he replied...."die". My first thought was that I'd want to punch him, which of course I wouldn't do. My realistic reaction would be to tell him what a selfish ass he's being and that his dying would have such a horrible effect on his wife and kids..........why would he even SAY it to us?

You will get sympathy on this board, understanding, knowledge, advice, love, cyberhugs.........you name it. The one thing you WILL NOT get is pity. Snap out of it and fight the good fight. That would be one huge step to making amends with your wife and children. Show them how much you WANT to be with them.

You can do this Petey, but not by sitting around feeling sorry for yourself. Been there/done that/waste of time.

Much love,
Minnie

Petey - I ditto everything above. If you think giving up and dying is going to prove something to your family, the only thing it will prove is that you gave up when you could have taken charge and made a change for the better! Besides, if you start taking the suggestions offered above and start DOING something instead of waiting around for the pity party to start, you will feel much more in control of your life and you will be too busy to get down and depressed. So get moving. DO IT!!

Petey,
When I joined this board, YOU were the one to tell me to take it 1 day at a time. I'm still doing that and I hope you are following your own good advice!
Stay strong--for yourself, your family--and for us!
We're thinking of you,
Brenda

Petey,

Many people here have come to love and admire you. Your sense of humor, anger, strength and devotion to helping others has moved many to tears...some of joy and some of sadness.

As I read the above posts, I was overcome by a deep feeling of anger that you would now, after all that you have gone through, tell us that you are ready to give up. You came to us ready to die and look how far you have come.

The one word that I cannot picture on your tombstone is "QUITTER".

There is a great deal of love and great deal of advice in the above posts. Many of them you could of written yourself to help others.

Let's see the Petey that is going to fight the fight come back on this forum! Pity does not suit you.

Jerry

Petey, you have un-finished business to take care of. You need and obviously want to re-connect with your family. Now is your chance. It might be the hardest thing you ever had to do, but with what you have shown us, you can do it. The compassion that you have shown here, and the strength, show that you are equipped to do and say what you have to do and say to make your family believe that you love them and want them in your life. It will require humility, and energy, and right now I am sure that you are low on energy.....but heck, if you can do what you did last week, with all of that work on your property, you can do this.

Do it now, before your rad. treatments slow you down. If you can't bring yourself to speak the words you need to speak, or if you don't have the opportunity, use your beautiful gift of writing. You have a beautiful way of expressing yourself, and with the written word, you can work with your message until it says exactly what you want it to say. Then you can follow it up with contact. And whether or not you get the response you hope for at first, at least you have said what you wanted to say, and you have extended your hand.

If things are as bad as you say, they might not take that hand immediately. Don't stop trying. Write again, never showing any sort of anger, but simply expressing your love for them and your need for them in your life right now.

This project will probably make radiation treatments seem like playtime, so get with the program and don't let us hear you talk about giving up on any of it.

What's the worst that can happen?? That you won't get them back?? Is that worse than what you have now? And what's the best that can happen?? That they DO respond and come back into your life on some level. If they do that, then there is always hope that they will come closer and closer as time goes by.

You can't make things worse by trying, and you might make them better. I'm betting on you. Let them see the old Petey....the one they used to love and probably still do.

Good Luck. XOXOXOXO

Hey Petey,

We know you're out there......... Check in please!

Petey,
Reach down and tighten those boot straps real tight, grab your helmet and flak jacket, place one foot in front of the other and take the fight to the enemy. Dont look back and make the best of what you now have and win. Cheer up the best is yet to come. Bob

Petey


You and I have become friends and You have helped me through and the understanding (somewhat) about the alcohol. How can you even think about giving up ? You have fought so hard to get the treatment you deserve. Ya it sux ....Everything does at one time or another! And families have their issues ..But they are family and they are going to stand by you and help you through .

You have been given another chance SO RUN WITH IT ! Until that Dr says there is nothing more we can do ..you would be a hypocrit to lay down and do nothing ! I dont feel sorry for you .. I feel bad that you have more nodes that are affected, but not over everything else, cus YOU CAN FIX that . You tell me how to do it ! AND YOU HAVE THE BLUE OCEAN !!! I don't have that !! ( I am jealous !!)

This whole thing SUX ..we all agree . I know have a tumor in my trimegnal Nerve which is paralysising my face and my left side and IT SUX !! and it is from the surgery related to my cancer ..but I DEAl I have bad days but i move on ..For my kids ...SURE ... BUT also for ME ! I am so young and so much to do and so are you !!

So go for that drive to that ocean ..find the peace and pull yourself togther !! ANything worth having isnt easy ! I LOVE YA LOTS AND LOTS Petey !!! I couldnt have done alot of this without you and you humor and I am sure alot of people feel the same .....SO SNAP TO IT !!


Shar


Ps

Read Davids post about one year ago today was his 1st Rad treatment....There is some inspriration for YOU !

Petey, don't know what to say to you because my husband fought like hell for the 2 years he battled this disease because he really wanted to win-he did not win, but maybe you can. Amy in the Oz

Petey, please check in.....want to hear from you, Carol aka crab cakes

Petey has "checked in" at the "General Board" Global Medical Center on 7-13-07 at 12:23 AM.

In lew of sending you all flowers his latest request was to read this message and then visit him at the "General Board".


What is a friend? I will tell you it is someone with whom you dare to be yourself.

Truly great friends are hard to find, difficult to leave, and impossible to forget.

A friend is one who knows us, but loves us anyway.

Nice to hear your "voice," Petey. I'll go to the General Board to hear more. And, as usual, you leave us with lovely thoughts. Hang in there, buddy!

XO

Petey,
The "boost" is usually applied at the end of the radiation treatment protocol.

Hey Petey,
Just wanted to let you that I shared the posts from above with mom tonight...she cryed-a lot- when she read that you said you wanted to die. She asked me to get on and tell you not to give up hope. You scared her. Remember, other people have so much faith in you. You gave her so much help when you called that one day. You asked for the wrong gift on your b-day--you should have asked for more faith.
I hope you are feeling better. This beast is nasty and sly...never know what's gonna hit you next.
Happy belated birthday to you. keep strong.
Donna