All i can do is gasp

Hondo said:

Hi Clearblue
You know that I am there with you both in thought and prayers and will continue to be there for you. Joe makes a good point, celebrate each and everyday and don’t worry about tomorrow as tomorrow will take care of its self.

All the best to you and your wife my friend
Hondo

sweetblood22 said:

I pray for your wife and
I pray for your wife and your family every day. It was a difficult decision whether to take the chance with radiation having FA. I agonized over it for a long time and got three opinions but it's so hard to get the info you need with such a rare genetic illness that is not known by most docs. You know I'm here whenever you need support.

Hugs and blessings,

sweet

Clearblue said:

Love and curtains
Hi there

Soccerfreaks: "but I would ask her this: after all that you have been through, are you willing to give in now?" by giving in, do you mean saying no to Rad T.?

Sometimes i get back from the hospital and i fantasize having a big party to celbrate how xtra-ordinaily lucky i feel to have her as my wife. But though i can hold onto the opinion that i am a rich for this reason, i just dont succeed in maintaing the "celebrate each day" attitude.

SweetB: You are a Rock. Though my wife hasnt contacted u directly, u should know that we often refer to you and so does she, as we did today at the hospital. She asked if you had surgery to remove scc from base of tonge or did u only do RADS? One of the fears we have is that if she goes into RADs, she goes into it with a mess of a throat - 5 surgeries later adn its impossible for her to eat now without coughing anyway, because of the partial larengectomies.As for the lumbectomy..... . As she only has one vocal chord, I doubt shell have a voice left after RAds. As for her skin, which is quite thisn amanyway and which has had more thatn it can tolerate from Erbitux..... Who knows?
The thought of seeing her suffer the way some of you have is almot unbearable.

She's now recovering from removal of scc from neck. We saw it 7 weeks ago, adn the enco said "it was nothing, just a fibroma, common after surgery phenom." It was only after we had a check up later, that she decided to have a needle biopsy, which came back positive. I cannot tell you all how much she berated herself for not doing it immediately. As for the Onco's rather arrogant sense of self confidence.....well let's move on.

The procedure went well, and shes recovering . Im slowly learning that it doesnt matter what the surgeons see. Its what they dont see that matters. Well be having an MRI soon, i assume because the C beast hasnt given enough between time.

Before the opp i told her that i think of her 1000 times /second. She replied that "its a pity i thought about that when i could be thinking about more important things like: what curtains we should put up in the house!"

I tend to run around this discussion site like a chicken without a head(apologies to vegatarians), adn thats why ive been off it for a while. Its obviouse i need someone to handle all info for me so that my ADD brain can have space to breathe.Ok now back to earth.... .

My wife would have me on the chopping block if she new i was referred to as a carer.
She once told me to Love her, not Care for her! I think that ties in somewhere with the curtain bit.

Thanks Hondo Delnative & Rat for responding. Hondo you know how much i appreciate your manner and Delnative though we have had no direct sharing, your human reponse post when following Chefdaddys breakthru in hospital, facilitated by Hondo, stuck in my mind.
There are others on this site to whom i feel that i should thank for giving me time in the past; kimba, noelsmom, scam and others ,

YOURS
Clear.

Clearblue said:

thats what i meant
your post: "it frankly scares me half to death. I cannot help but wonder if those things lay in my future. And, I am not a rock by the way. I am a quivering lump of jelly with a candy coated crunchy shell. The shell is not particularly hard either."

BY THE WAY, Thats what i meant. , You are a rock.

Bigfuzzydoug said:

I question some of your reasoning...
"Doing everything possible to avoid RT." Why? Thoughts that went into our treatment decision...

* Surgery isn't guaranteed unless the primary is so well encapsulated that you know it's not anywhere else.
* PET & CT only pick up masses about 5cm or larger. Smaller clumps of malignant cells could be missed with surgery.
* RT is a broader approach to making sure bad cells in the area are killed. Chemo is even broader as it's an entire-body drug.
* RT is once in your life (in that area). I was afraid I would have no backup. But guess what, there is surgery and chemo in reserve for the future in case... (BUT I WON'T NEED IT BECAUSE IT'S NEVER COMING BACK!)
* Surgery for me would have meant almost certain lifelong dysphnonic. My voice would have been permanently ruined.
* My RT experience is different than Joe's, which is different than Susan's, which is different than potentially your wife's. I was told the "RT horror stories". Told them a lot. "He can never eat again." "Her teeth fell out." And I would ask, "how old are they? Are they a smoker? Where is the cancer?" and all sorts of quetsions and you know what - they weren't me.

So you want a happier RT story? Read my Caring Bridge journal of a laryngeal SCC S2/M0/N0 survivor. 35 treatments of IMRT to the neck. You want to know something? It was bad, but not horrible or unbearable. I didn't need a PEG feeding tube and I never went on a liquid diet. I missed a grand total of 1 day of work. Yes! I worked through my entire treatment period. I took my pain meds. I put on the Radi-Gel and Aquaphor. I slept when I was tired. I SURVIVED IT. And how am I today?

No pain, can eat/drink anything I want, neck skin is all better - in fact, I no longer have to shave. Whiskers are fried off! Voice is still only 60% but will get better. Energy at about 80%. Some days I have some slight dry mouth, but no big deal.

So my point is don't take anyone else's experience as what it will be for your wife. We're all different and handle it differently.

http://www.caringbridge.org/visit/dougbernstein

sweetblood22 said:

Why avoid Radiation?
Yes, Doug. Chemo is deadly for an FA patient. Radiation odds for us to live thru, suck. To be blunt. Sorry. I was told by a doctor who is one of the lead docs in radiating FA patients that only 30% make it thru. He had told me that the last FA patient that he radiated died of a simple fungal infection. Scared the crap out of me. It was an agonizing decision for me, as I am sure it is for Clear's wife. Cancer in an other wise healthy person is bad enough. Cancer in a Fanconi body is worse. We have birth defects, compromised immune systems, bone marrow complications, the list goes on. I've not found a person yet with FA that lived past 45. I'm 43. So, yes, it tears you to pieces when you get an FA diagnosis and then a cancer diagnosis on top of that. My brother died just shy of his 21st birthday. He had FA but he ended up with bone marrow failure and didn't make it thru his transplant.

Clearblue said:

Everyone is right.That's the problem.
Doug, your story is just amazing.

FAs dont tolerate Chemo.

AS for Rads. We are told that out of 9, 4 never made it through the Rads itslelf. Others suffered severe effects.

I apreciate you sharing "thoughts that went into your Rad decision. THe big difference here is that for you "RT is once in your life (in that area). I was afraid I would have no backup. But guess what, there is surgery and chemo in reserve for the future in case..." .
For Fanconi, unless you play guini pig and prove differently. Choosing Rad COULD BE CHOOSING TO END LIFE. NOT CHOOSING RAD IS LIKE CHOOSING TO END LIFE TOO.

Every doctor we have communicated says more or less the same thing: "Our experience of RT has been severe. Great care should be taken when considering RT. We wish you luck in your decision."

YOU'RE RIGHT . Everyones right. Thats the problem.
Clear.

sweetblood22 said:

5'2" 101 lb ginneau pig.
Thank you, Roz.

You know, Clear, that is exactly what I always feel like. A big gineau pig, and I dont like it. I know it's not just me that sees that because my step mom became unglued when my RO kept pushing chemo. Even after I informed him of the facts. I also gave him another RO's cell phone number who has treated several FA patients and is one of the most knowledgable people on the subject. My RO did not contact him. That really did not sit well with me.

Clearblue said:

Everyone is right.That's the problem.
Doug, your story is just amazing.

FAs dont tolerate Chemo.

AS for Rads. We are told that out of 9, 4 never made it through the Rads itslelf. Others suffered severe effects.

I apreciate you sharing "thoughts that went into your Rad decision. THe big difference here is that for you "RT is once in your life (in that area). I was afraid I would have no backup. But guess what, there is surgery and chemo in reserve for the future in case..." .
For Fanconi, unless you play guini pig and prove differently. Choosing Rad COULD BE CHOOSING TO END LIFE. NOT CHOOSING RAD IS LIKE CHOOSING TO END LIFE TOO.

Every doctor we have communicated says more or less the same thing: "Our experience of RT has been severe. Great care should be taken when considering RT. We wish you luck in your decision."

YOU'RE RIGHT . Everyones right. Thats the problem.
Clear.