Tuesday, October 05, 2010

I Am Starting To Get Annoyed

I know....it's a steroid day...second in a row....so this may not be a good idea.

As I tell people about my new, positive results on chemo, one of the overwhelming responses I am getting is "I knew it!"

Ok....no you didn't. Because I didn't.

You had faith and you hoped it would work. Because you care about me....want what's best for me....worship me....as well you should.

But you didn't know.

All evidence pointed in the other direction. The guy at Dana Farber told me point blank that waiting until I was symptomatic before trying anything was a fair option. Sure he pissed my father off royally and I wouldn't treat at Dana Farber.....but it is where people literally come from all over the world to treat this cancer. And just cause the guy's bedside manner left lots to be desired doesn't mean that it wasn't the considered medical opinion of a specialist in a world renown hospital.

Dr. Hochstin, Dr. Miller, Celgene and the IMF all agreed in October, 2008 that my best option was Revlimid and low dose dexamethasone.

All literature said that the best odds were on that combo and going for the three drug combo with Velcade would be grueling and have lower odds of success once I failed at one regime.

Dr. Hochstin and Dr. Miller agreed that for most people, Velcade is much more difficult. Dr. Hochstin referred to it as "toxic".

It was also universally agreed that Velcade could bring on irreversible peripheral neuropathy. That I could take this chance and end up permanently in a wheelchair, in excruciating pain. Seeing as I how I had endured eight months of peripheral neuropathy (which thankfully reversed itself).....I had to consider that.

So you didn't know.

You may not mean it this way, but it comes across as a criticism of what I chose for myself in March of 2009.

When you tell me that you *knew* you sound like someone who buys a scratch ticket and after they reveal their cash prize, they say "I knew this was a winner."

No you didn't....you hoped it was a winner. You hoped this would work. And to be clear....it hasn't *worked* yet.

I'm very touched by how many people care that this appears to be working. I am grateful for all the people rooting for me to achieve remission. And let's be clear, that's the goal. There is no cure for multiple myeloma.

S0 lay off the "I knew it!" crap.

Especially on steroid day.

Especially if you are within my physical reach.


Michael Junge said...

I knew it!

Someone would piss you off!


Yer Marine said...

"Sonny's a hothead. I mean, you can't talk business with him!"

- Virgil "The Turk" Sollozzo

Warrant Diver said...

As I am WAY out of your physical reach I will refer you back to my post where I reminded you to "keep your heart up" because doctors are wrong...a lot. And good things do happen to good people. Although I can't remember a post where that PARTICULAR adjective has been used to describe you :)
That's not really an "I told you so" because this fight ain't over for you yet. Just keep your heart up.

BostonMaggie said...

You'll pay Junge.

It's true...I am Sonny.

WarrantDiver....leave it to a Sailor to take my warning as a challenge. You will be clamshelled!

FbL said...

Heh. I had the same ideas as Junge... ;)

BillT said...

Soooo many people cruisin' for a bruisin'. You're just gonna haveta stay around just so's youse can lump 'em, yanno?