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Old 02-16-09, 11:38 PM   #1
BluesDawg
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Standing at the crossroads ... on pins and needles (warning - long and all too real)

While genuinely happy to hear the great news that overthehillmedi reported earlier, I am unfortunately in a very different point in my own cancer treatment.

I had hoped to receive similar news last Wednesday when the results of my PET scan came in. But instead I got an inconclusive result that suggests the presence of lingering cancer in spite of very different expectations by all my doctors and by me and my family and friends. The PET scan showed a fairy high level of reaction in the same area where my main tumor had been on the base of my tongue.

My main otolaryngologist at the Medical College of Georgia, in whom I have the utmost confidence, said that she has a strong feeling that this indication must have some other explanation than residual cancer. To that end, she had me come in for a biopsy last Friday to see if she could find cancer cells or a different diagnosis in the area that lit up in the PET scan.

The operation was made all the more interesting because of the discovery during my recent surgery to close the hole from my tracheotomy, that the airway in my neck has so much stiff scar tissue caused by the radiation therapy that it is impossible to intubate me to maintain breathing while under general anesthesia. Instead, they had to use awake fiberoptic laryngoscopy to establish the airway before putting me under for the surgery. This involved a very strange bunch of sensations as they crammed all kinds of sprays, liquids and gels into my nostrils to deaden things and then the scope being threaded through my vocal cords. The strangest may have been seeing the anesthetists high fiving each other upon successfully threading the needle.

Now I await the results from the biopsy to determine whether I can relax and go on with my life, concentrating on rebuilding my strength and learning to cope with the permanent and temporary damage done by the therapy which (hopefully) eradicated the cancer. If the results are negative, I will have to undergo more tests, possibly MRI, CT or other types of imaging to establish just what it was to which the PET scan was reacting. Possibilities include scar tissue, infection, residual radiation activity and other things my doctor named and I couldn't understand or remember. As I said, she feels strongly that there is another explanation. I hope she is right.

If the biopsy does turn out to be positive, we will be faced with some very difficult decisions. Due to the sensitive nature of the tissues in proximity to the treatment area, there are short limits to the amount of additional radiation therapy that can be applied without causing unacceptable levels of damage. Given those limits, it is questionable how effective such treatments can be expected to be. The next option is surgery, but again the area involved (the tongue) is so sensitive and so vital, that the options there can be so brutal (nearly complete removal of the tongue and the resulting complete loss of ability to talk or swallow without mechanical assist) that I may very well refuse to accept it. Forgive me for being so morbid, but at that point I may be just looking for ways to delay the progression of the disease for long enough for me to maximize the time I have left to spend with my family and to enjoy my passion for riding bicycles. I do not envision my life ending with a series of futile attempts to prolong a progressively nonfunctional existence. I am more interested in quality of life than in quantity. A diagnosis of cancer forces you to realize the fact that nobody gets out of life alive.

I suppose it is no surprise that I was not able to bring myself to go to work so far this week. I do have a great deal of pain in my throat after all the poking, scraping and squeezing they did in there Friday. I also am having a lot of trouble concentrating on anything for long enough to be productive at the office, both from the emotional roller coaster I'm on and from the amount of pain medication required to keep me out of agony. I am getting enough sleep overall, but it is not coming in timely packages that will allow me to function at work. I have no intention to go in on Tuesday. On Wednesday I am scheduled to go to Augusta to review the results with my doctor and to plan where we'll go from here.

I can't recall ever being in a situation where such radically different future paths hinge on the results of a test. I have never imagined being able to relatively calmly discuss such terrible and wonderful possibilities with my wife, literally life and death.

To those of you who are still reading at this point, thank you for giving me the opportunity to air out these thoughts. It is cathartic to me to be able to talk about it. To that end, I plan to give my best friend a call tomorrow to see if he can come over and let me use him as a sounding board. I need to get some honest feedback about some of the things I am thinking, without the emotional aspect that is inevitable when discussing this with my wife, my kids or my parents.
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Old 02-17-09, 12:11 AM   #2
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I've got my top team of prayer sayers, Kira (10) Esme (7) and Malia (5) on the job! God bless.
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Old 02-17-09, 12:14 AM   #3
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You get 100 points for courage. Our prayers are with you.
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Old 02-17-09, 01:30 AM   #4
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My goodness, BD. I can't imagine having to grapple with such a lousy set of potential options. The shock and dismay must be intense. I can understand not going to work - too much to deal with that is far more important. I sure hope you get a negative test result.
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Old 02-17-09, 01:37 AM   #5
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BD, I'm keeping my fingers crossed that you'll have a positive outcome. It just has to be that way.
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Old 02-17-09, 02:53 AM   #6
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What an awful place to be in, BD! Sending good thoughts your way.
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Old 02-17-09, 04:23 AM   #7
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In the end, you do what you've always done. Pick a line and nail it.
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Old 02-17-09, 05:08 AM   #8
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Be positive!

Yes, I know it is easier said than done and for the rest of us it's difficult to imagine what you have had to endure but that's what you have to do - stay positive!
You need to keep that mind busy my friend and if you are not up to being physical then concentrate on the mental aspects of that.
You're into biking right, given that you've got a tandem then you don't do this alone so why not plan your next trip starting now. Don't plan for the immediate but perhaps next year. Make it ambitious and plan to take your partner with you. Pick a route - your blessed in the US with too many fine routes to choose from - and do the research. Plan every day, every moment. What gear will you need, what will you take, where will you go and where will you stay. Try to tie it in with some event that is en route - and don't make it easy make it ambitious. Think through the detail. How will you record this event, how will you make it special - and how will you let us all know afterwards
You'll need to research the web, get maps, talk to others etc so that will keep you busy for some time to come. Be positive my friend, we are all thinking of you and know you can do it!
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Old 02-17-09, 06:01 AM   #9
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pulling for you here, BD.
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Old 02-17-09, 07:04 AM   #10
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that's what you have to do - stay positive!
Good advice (although, I'll handle the details). As my Grandfather, a very wise man who always had a saying ready for any situation, used to say " Live in hope, lest you die in despair". And as any good mountain biker knows, you don't look at the thing you don't want to hit, you look at the way around, over or through it.

For today, my agenda will be to install some of the goodies I gave my road bike, Ribby, for Christmas. The nearly NOS Dura Ace front derailleur and the new Ultegra rear derailleur will go on today as will the new Vittoria Rubino Pro Slick tires. If my good friend can come by to visit, I'll let him spot me as I put in some time on the trainer (it's a little too cold for me to be outside on the bike today).

Thanks for the good wishes and for giving me an outlet.
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Old 02-17-09, 07:41 AM   #11
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Thank you for sharing your pain, worries and concerns. It means so much that you feel okay with sharing this with us. I only hope that in that sharing you know that all us here care about you and hope the best. If we can help share this burden with you that is the least we can do. RR and I are both praying for a good outcome.
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Old 02-17-09, 07:49 AM   #12
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ITo those of you who are still reading at this point, thank you for giving me the opportunity to air out these thoughts. It is cathartic to me to be able to talk about it. To that end, I plan to give my best friend a call tomorrow to see if he can come over and let me use him as a sounding board. I need to get some honest feedback about some of the things I am thinking, without the emotional aspect that is inevitable when discussing this with my wife, my kids or my parents.
Hang in there. I'm going through a similar situation in that I had a radical prostatectomy in May of 2003 and despite no longer having a prostate, my cancer has now returned.

I've found that taking to family and friends seem to bring mixed results. My wife and brothers are great but I have a sister and some in-laws that seem to make things worse either through uninformed "help" or in the case of my sister, melodrama. Luckily, I have a good friend who has been pretty good to talk to. I try to be upbeat and positive when talking to family/friends but one can't deny the bad prospects, either. I try to look at it as a speed bump in the road of life and while it may slow one down, you have to keep going with the goal of getting back up to speed.

Regardless, I'm currently undergoing two kinds of hormone therapy and will start 8 weeks of daily radiation either tomorrow or next Monday. Hang in there and I'll add you to my growing list of people that need some extra thought and feeling for.
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Old 02-17-09, 07:55 AM   #13
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BD, we will keep you, and yours, in our prayers. God Bless!

Once you get over this hurdle, there will be plenty of nice, warm, spring days to enjoy out in the countryside.

Georgia is beautiful in the spring.
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Old 02-17-09, 08:00 AM   #14
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Wishing you all the best news BD. Your courage is amazing.
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Old 02-17-09, 08:06 AM   #15
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BD,
I cannot fathom what you are feeling with these decisions you must make. As the others have said you are a brave person for coming here to talk about your predicament so openly. I have nothing but prayers and good thoughts to offer you and your family. I do pray that your oncologist will have a plan and some better news as well. If I can ever do anything for you please let me know.

Bill
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Old 02-17-09, 08:07 AM   #16
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In the end, you do what you've always done. Pick a line and nail it.
+1 to that--and to all the other good thoughts coming your way.
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Old 02-17-09, 08:26 AM   #17
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It's a damnably hard time BD. Still, the courage you have and show will bear you through, I have no doubt of it.
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Old 02-17-09, 08:27 AM   #18
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I was really hoping by this time you have this terrible decease licked and I'm sure you did to. After losing half my family to cancer it's a tough road to go. I sincerely hope and pray you win this battle. God bless BD, I'm pulling for you all the way.
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Old 02-17-09, 08:36 AM   #19
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My thoughts and prayers go out to both you and Trsnrtr. The paths we must follow in our individual lives are unique and unpredictable. Both of you show incredible courage and strength in following yours. Your willingness to so openly share your experience, while painful, is a gift that give us deeper access to our own humanness. Thank you both for allowing us entry into your lives. I will, as Quakers are prone to say, hold you in the Light.
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Old 02-17-09, 09:02 AM   #20
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Will put you in the prayer list and hope it all works out soon, your courage is amazing.
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Old 02-17-09, 09:03 AM   #21
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The strangest may have been seeing the anesthetists high fiving each other upon successfully threading the needle.
It's better than hearing the other comment from a surgeon that gets your attention: "Whoops."

I had declared victory over my colon cancer in 2005. A clear CT scan in October, and monthly CEAs were good. In November, my docotr had me back in to do another CEA because he said the last one was unusual, and I went off on a trip to NYC with my wife and son. When I got back, I got the news that my CEA was way up, and a PET scan showed a tumor in my liver. Colon cancer spreading to the liver is very bad news.

Being told you have cancer is a real blow. Being told it's back, especially when you've convinced yourself you've won, is surreal. I vividly remember sitting in my car at lunch after talking to the doctor, crying like a little girl, calling my wife and parents to give them the news. The wait - the time between being told something is not right and getting the diagnosis -puts you in a place you never thought existed.

More surgery in January 06, truly brutal chemo for five months until 7/19/06, and two and a half years later I remain cancer free. Bad news comes. So does good news.
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Old 02-17-09, 10:31 AM   #22
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Having walked down that scary path a little ways and looking at the realities of life I only hope that the doctors have some good news for you and it was just a glitch in life. Take care my friend and don't let that cancer crab beat you up.I think that I'll do a little pulling for you now.
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Old 02-17-09, 10:51 AM   #23
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I like maddmaxx's cycling metaphor "pick a line and nail it", and you're just the guy to do it. We're all pulling for you BD.
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Old 02-17-09, 11:19 AM   #24
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Hang in there. I'm going through a similar situation in that I had a radical prostatectomy in May of 2003 and despite no longer having a prostate, my cancer has now returned.
Dennis,
I'm very sorry to hear this. I hope that you will be able to knock this unwelcome return visitor out of your life. Hang tough.
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Old 02-17-09, 11:47 AM   #25
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Possibly good news - I'll learn more in a week

At this point I am being very careful not to leap to conclusions about things I don't fully understand, but I just got some news that sure feels like good news. I will know more next week.

My wife called the ENT office at the Medical College to check on my appointment time for tomorrow. One of the doctors who works for my doctor came on the line and told her that the pathology report had come in from my biopsy. He said that the report said there was no indication of cancer cells in the samples, but there was evidence of "chronic inflammation". That does not sound like necessarily a "good" thing, but it sure does sound better than hearing that they found cancer.

I have an appointment for a CT scan next Wednesday and will see my doctor later that day. I'm trying not to be too excited about this, as I don't really know what it means, but I seem to have a big grin on my face anyway.
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