Predictical: Hoping to draw 2 Aces; Testing to prove a reliable Stage 1

There is possible superbly good news out there, that we're going to pursue before we start chemo.

As all other tests keep coming back either empty (of cancer) or strongly healthy (my blood tests), we're making a bayesian inference that there's a chance that I'm one of the very rare patients whose lymphoma may turn out to be provably "Stage 1"--really, truly, confined to just my neck and not already circulated and hiding beneath the threshold of a CAT scan.

First and Second Opinion doctors agree: it is worth seeing if, through the next two tests, we can  build a case that I'm unusually healthy.

It's like God wrote my story on 5 poker cards*,  laid the hand face down, and I have to pay to turn each card over, trying to beat 4 Kings:

Card 1: 2 of Clubs, Mantle Cell Lymphoma. Most stories end in Stem Cell agony.
Card 2: Ace of Clubs, nothing detected in CAT scan
Card 3: Ace of Hearts, repeatedly great blood tests (including re-tests and new tests yesterday)

So, the narrative of "regular" MCL has weakened and there's a narrow path to very rare single-node MCL.  As seen below, First and Second Opinion are that I should keep drawing cards in tests rather than going straight into Chemo:

Card 4: ? Marrow test. Anything but an Ace and I stop drawing and go to Chemo
    but if an Ace, then I can persuade my insurance company they should pay for Card 5

Card 5: ? PET Scan (most MCL patients it isn't worth drawing, for me to Ace this, the PET must light up only the one known-cancerous lymph in my neck)


Dana-Farber Cancer Institute just replied with their opinion about whether I should get 2nd opinion now, or wait until the threshold of ASCT.  Their answer, was "yes" based on the chance that I might be one of those very rare people who really, truly, had lymphoma only in one place (Stage 1).

[blogger's oncologist] is very good and assuming that [blogger] has advanced stage disease, we would do exactly as she recommended including stem cell transplant and there is new data to support giving rituxan for 3 years as maintenance after transplant.  
If  [blogger] had Stage I disease (marrow and PET negative) which is very rare, we would treat differently. If he wanted a second opinion, we could get him in here quickly and anyone in the lymphoma group could see him.

Based on this, we will delay Chemo start for 1 week while we do the marrow test and build a case-for-building-a-case that my cancer is rare and easy.  If that case falls apart, I'll have only lost about 2 weeks on chemo's start.  In fact, [blogger's wife] just contacted our First Opinion doctor and she agrees with Dana-Farber:

[blogger's oncologist] was very receptive, and agrees with everything we were asking for. She did mention that part of the reason she was moving so quickly is that [blogger] seem[s] so anxious to do so!  Also, the low white blood count in the original CBC had inclined her to think the cancer was more widespread. But she had just received the results of yesterday's tests, and was surprised to see that everything was normal and healthy. So now she herself would be more inclined to wait and do more tests. 

It was a very nice call, and [we] appreciate so much how receptive [first-opinion oncologist] was, and willing to work with us. And she feels that we have time to do this extra investigation.

She also feels that she won't have any trouble getting the PET Scan approved from [my health insurer], especially once it becomes clear it would alter the treatment.

My marrow test (stab me in the back with a giant needle into my pelvis) remains scheduled for Wednesday. We are not really expecting the marrow to be positive, but if it actually were negative (increasing the chance that my cancer was a very rare easy Stage 1 case)we have then built the case to my insurer that it was worth their while to pursue the unlikely case that mine was a "reliable" Stage 1.

My PET scan was cancelled by my insurance company for cost reasons (they had me do a less-accurate CAT, because nobody was expecting it to be negative).  But now that the CAT was negative, at least Dana-Farber thinks it worth trying to prove that I really am cancer-negative everywhere beyond my right neck.

Oh please, oh please, oh please!

It is all a bet that we'd be soooo confident that I'm a "very rare" very good case that I'd actually do the "something different" and save everybody a lot of time, treasure, and trouble.

*it is important that the hand not be a random deal, but rather a story written in cards that I'm trying to uncover.