...then again it could be a whole lot worse, but it's too early to tell.

I had a follow up appointment with my radiation oncologist a couple of weeks ago. After happily joking and making small talk with him and going through the exam process, we got to the point of pulling the scope out of my nose (always a relief!) and he was all frowns. I knew immediately something was up. When I asked him how does it look, he said he wanted to feel my tongue before he answered and continued to frown. After he completed his exam, he said he saw an abnormality about the size of a pencil point near the original tumor site and wanted a fresh CT scan and one of the other docs to have a look.

I had the CT scan last Thursday and an appointment with the surgeon Friday. He scoped and choked me and saw what the rad onc saw, but said it didn't look like cancer and that he didn't want to see me again for three more months -- the standard first year follow-up interval. However, the radiologist had not reviewed the CT scan by that time. So the surgeon told me if the radiologist saw something, then they would call me and have me back in six weeks or less. I got a call from the surgeon's P.A. yesterday morning -- the radiologist saw something: "...a fullness that is worrisome with regard to recurrent disease."

It was a tough day after that phone call yesterday. Sometimes I get so sick of being sick or recovering from being sick. Sick of hopspitals and their smells, of needles and catheters, of doctors and their vocabulary that I don't always understand, of........I digress. This post wasn't meant to be a rant.

In any case, I go in for a pandenoscopy (spelling?) December 1st, which is right at my one year post-treatment anniversay. We'll get a biopsy sample and see what the pathologist says. I'll post an update after the pathology report is in.

Thanks for the chance to externalize some of this.

-Brett

Hey Brett,
Just wanted you to know that I will pray that there is no cancer with this abnormality. It is so hard to wait on results and try and figure out exactly what they are saying and thinking.
Take care and God bless,
Debbie

Wish you the best. As its been said many times what does the biopsy say. Get your mind off it and wait for the final results. You will only feel worse the more you dwel on it. God Bless.

Brett, it ain't til it is. Try not to think about it. Get rid of the worry as you get on with your life. What will be, will be, and worry won't help anything. One day at a time. Will pray it is nothing of concern.

Brett, I am so sorry you have this worry again. As Kirk said, it is nothing but a "fullness" yet, and probably never will be, but I know you have a hard time keeping your mind off the possibilities.
i know what you mean about being tired of the whole thing, doctors and hospitals, needles and nurses. Tomorrow is my first day of in what seems like months that I don't have a doctor's appointment, and that is only because I made a mistake about the date and had to reschedule!
I hope you will have the best news in December!
Leena

Hang in there Brett,

Hoping all goes well with your path report. Hard not to worry when you think of a reoccurance I know.
I am also tired of the whole scene. Smells, Nurses, Doctors and scans. I think the longer we go through the treatment the more sick of it we get. I'm pulling for you Brett.

Danny Boy

Brett,
I am sorry to hear the worrisome news. I am hoping for the best for you. I know what you mean about being tired of the hospital scene, but now that I go in so seldom I actually kind of miss MD Anderson and seeing some of the people there. Of course I never miss having that scope stuck through my nose.

Take care,
Danny G.

Brett, the wait is awful, hang in there and keep looking up!!! God Bless, Carol

Brett, I am so sorry you have this worry again. As Kirk said, it is nothing but a "fullness" yet, and probably never will be, but I know you have a hard time keeping your mind off the possibilities.
i know what you mean about being tired of the whole thing, doctors and hospitals, needles and nurses. Tomorrow is my first day of in what seems like months that I don't have a doctor's appointment, and that is only because I made a mistake about the date and had to reschedule!
I hope you will have the best news in December!
Leena

Hang in there Brett,

Hoping all goes well with your path report. Hard not to worry when you think of a reoccurance I know.
I am also tired of the whole scene. Smells, Nurses, Doctors and scans. I think the longer we go through the treatment the more sick of it we get. I'm pulling for you Brett.

Danny Boy

Brett,
I am sorry to hear the worrisome news. I am hoping for the best for you. I know what you mean about being tired of the hospital scene, but now that I go in so seldom I actually kind of miss MD Anderson and seeing some of the people there. Of course I never miss having that scope stuck through my nose.

Take care,
Danny G.

Brett, the wait is awful, hang in there and keep looking up!!! God Bless, Carol

Brett-
I'm sorry about your news. We just had a scare, too. Perservere. We will be praying that it turns out well for you.

I think we all have a love/hate relationship with our medical/oncology team and the hospital scene. Each time we walk that fine line/hear the drum roll I think about Ed's first day (when they made his mask/did his simulation for radiation). There was this relatively young guy - maybe 25 at most 30. When they took Ed back - I couldn't go for that part. The young man burst out in tears and apologized for not telling Ed directly. He made me promise to tell Ed that even when Ed got so sick of needles, hospitals, treatments, surgeries, etc. - NEVER give in (more accurately "up"). He went on to say that he had recurrent cancer for 5 years - Non Hodgkins Lymphoma - tried every type of trial, transplant, everything - just so he could have one more day with his kids/family. He said he knew he may not see a cure but for every day he allowed them to try something to help him, he was really helping someone else to have just one more day.

I'm praying this will be a false alarm and we'll all give a sigh of relief. Our creator sure has some interesting plans for us, don't you think? We'll all band together and get through it. Leave the worry to us and you focus on being well!

hey Brett,

you wrote, '...then again it could be a whole lot worse, but it's too early to tell.'

hold that thought and do those things that mean the most to you. be selfish. smile and hopefully the world will smile with you.

cu,
larryb

Brettt
Not much more I can add to above posts , just wanted you to know our thoughts are with you.
May Your God Go With you.
Marica

You guys are fabulous! Thank you for your kind words, good vibes and prayers.

You know, once we're post-treatment, I think we all carry the fear of recurrence around like an extra 15 pounds of body fat from which we can never rid ourselves. Whether it's at the surface and driving us crazy or down deeper and tightly controlled, it's always there. We may smile, look good, and be a picture of zen-like serenity, but it's there. And I think that fear controls our behavior like dysfunctional episodes from our childhood might control our family interactions. Whether you decide to never touch a potential carcinogen again or you go fatalistic and decide you better enjoy what life you have left, it drives our decision making process. I guess one of the things that irritates me the most about all of this is I can't really plan for anything except the next oncology appointment. I mean, I'm 41 years old and the thought of planning for retirement at this point makes me laugh out loud. Even if this biopsy turns out to be nothing, then that only extends my planning interval from weeks to months -- my next follow up visit. Living in the moment is fine, fun and sometimes fullfilling, but it doesn't get the mortgage paid off...

I guess I'm bordering on ranting again. I just wanted to jot down an observation about living with this stuff. Thanks again!

-Brett

Brett,

I hear you loud and clear. I am actually starting a class tomorrow...that runs for TEN MONTHS! This is the first time in many months now that I could even fathom looking that far down the road. When the class is over, I am once again eligible for life insurance! The paradox of life right now is that I want time to move faster but my fear wants it to move slower so I can savor every second of it.

Hoping for the best possible outcome for you.

Ed

We have to plan for the future but we cannot plan for the future. Having cancer is sort of being married to a practising alcoholic, your life is controlled by insanity you cannot change. OK, maybe it is not a very good comparison, or maube it is.
I still feel like I am a healthy person that has been kidnapped by this weird disease - or now two of them - and as if it should be possible just to shake it off, and go back to being ME again.
I don't like the new normal, where normal means that when you are just getting used to one miserable thing, another jumps out of nowhere and attacks you with a sledgehammer.

Ed, good luck with your class, I hope it is something you really enjoy! I had actually been looking into signing up for something (teaching ESL) but this new complication is going to postpone it for a while.
Leena

Leena,

I would like to tell you about one of my life-long friends, Carmen. One day he called me and after a brief pause just whispered..."I have cancer." We prayed together an then we talked. He was having a backache and went in to see a doctor. He is a Vietnam vet and was a Marine. He found out he had Hep C and suspicious spots in both kidneys. Within hours he was scheduled to have both kidneys removed. I urged him to go to MDACC for a second opinion before he had the surgery. MDACC saw him in one day as he was scheduled for surgery later in the week. In the end, he was hospitalized for 5 days, had one kidney removed and part of the other. He hasn't called me the past couple of months but secretly I know he is coming up on his FOUR year anniversary.

You're the greatest and remember...the sledge hammer moves much slower than the human body can react! I miss ME just as you describe but I still see glimpses of who I used to be from time to time.

Last Sunday Susan and I went to a Kairos prison closing. I have tried to get more involved in prison ministries for over 20 years. Let's just say I ran with the wrong crowd and paid my dues at a very tender age. I see now how He has added more character to me over the years and even though I have often wondered why...I know what I am to do with it.

May your future be filled with many more blessings and may he bring you to more and more crowds filled with His love. (And may the sledgehammer pass close by while narrowly missing you )

You are a ray of sunshine on a gloomy day.

Ed

Brett,
You make a good point about planning for retirement. When I was diagnosed one of the first things that I said was, " at least I no longer have to worry about outliving my money!" Let's hope that we all live long enough to have that problem.

Regards,
Danny G.

Brett, Your doing good partner, keep up the good work. Remember, planning for the good and living in the good is as easy as planning for the bad and living there, its just that the good side is more fun. So stay in the good side.

Ed, decolores, brother. Hope the Kairos experience was meaningful.

Decolores to you, too, Kirk.

Brett,
I'm just now catching up with all of you, and will redouble my prayer efforts. Tom's post-chemo/radiation scan showed suspicious nodes on the LEFT side, and now he will be facing 2 dissections. He hasn't said too much - other than 'let's get it all out of me' - but his actions/emotions show that he is concerned, and scared. We are keeping busy until surgery date - - - the surgeon offered to have Tom come back in to discuss the new findings, but Tom said 'No," as nothing will change the outlook. We'll pray your 'fullness' is nothing more than that - and that Tom's 'suspicious' nodes are nothing more than that!
Nicki

Nicki, my prayers are with you and Tom. I was told I had suspicious nodes, also, and that's why they wanted to do the neck dissection. I would have done it anyway, but it turned out all of the cancer had been destroyed by the rad/chemo, so don't worry too much, it may just be the dead cells or swelling causing the scan to see something suspicious.

Thanks, Kirk! I wanted to hear things like that! I will admit that the docs said they nodes could be dead, and we could 'wait and see,' but none of us liked that idea.

Hope you are able to enjoy lots of your favorite things this holiday I see your journey began a year ago - - God bless you - -

Hugs from Virginia!
Nicki