Saturday, May 15, 2010

Blogpost: Oh the Possibilities...


Sheesh. I know it's been a long time since I've posted. It's not because things have been boring. Quite the opposite this time. I'll try to shorthand the events of the last three months. I saw a neuroendocrine/carcinoid cancer specialist in Kenner, LA. Recommended "debulking" the tumor in my liver by taking out as much as possible. What? Surgery back on the table? Really? "Yeah it's risky and yes there may be complications, but your best chance at any shot of resetting your clock is to take the damn thing out. Oops, we can't take it out, so let's take out as much as possible and treat the rest with chemo on the spot. We'll take out your gall bladder, the other little tumor you never talk about, and feel around for the primary tumor while we're there. And by the way, this thing is huge."

Wow.

I went back to Houston and talked to my docs at MD Anderson. The recommendation was still, no surgery. No way. Chemo-emobolization or a study to "slow down" the tumor growth, but no surgery. They didn't seem to be supporters of debulking.

Shit. That's quite a difference of opinion. One of the top specialists in neuroendocrine tumors versus the number one cancer hospital in the world. Who the hell's going to make this decision? I opt to see another specialist. Not necessarily a tie-breaker, but to reinforce the recommendation of surgery. I leave for the University of Iowa in Iowa City to visit this specialist in early June.

Meanwhile, more testing to determine the logistics of a possible liver surgery. Not quite a done deal yet. For instance, how much liver must be left for me to survive? What are the vessels like? What type of strain is the tumor having on my liver? Is surgery really feasible? The answers to all these questions, and more, will be determined by any number of 64-slice CT scans, MRIs, etc. I've also been to a couple of support/awareness meetings and met other folks with this type of cancer and even some that have had debulking liver surgeries and more. Great people with plenty of good advice.

And that's where I'm at now. Teetering on the brink of information overload. Testing and waiting. I think, either waiting for a time to make a very hard decision or maybe I won't have to make a decision after all. Maybe there really is only one option after all the testing is done. Nothing happens very fast except the speed at which my mind can produce irrational and desperate thoughts. So for now, I'm willing a tumor to stop growing, drinking wheatgrass again and trying not to think too much. I also see Dr. BAH frequently for much needed advice. I'll try not to wait so long to update the blog again. Thanks, as always, for the constant support and prayers.

pow,
jan


5 comments:

Anonymous said...

Jan,
prayers and positive thoughts to you as you make these decisions.

love always,
The Canning Family

Ellen said...

Jan,

I think of you often as you go through all of this. It's just so, so much. I don't know how you do it. It has got to be so hard to not obsess over it. Much love and much positive energy to you.

Ellen

Austin Foodie said...

Jan,
You inspire me to be stronger, funnier and more positive. You must be in order to go through all of this and still be such a wonderful person to be around. Stay strong.
Hugs,
M

Unknown said...

Jan, That sure is a lot to figure out for yourself and to absorb. One of the things that my family discovered when my stepdad went through competing health concerns was that there are statistical organizations that might be able to analyze available data for you. I'm not sure it's that kind of situation, but just in case.... Let me know if there's anything I can do!!! Too hot for a LB Lake walk sometime?

Delores G. said...

Hi Jan!

I am ever hopeful that providence will come to you in making this really tough decision. Meanwhile, enjoy that wheatgrass! Also, I hope that you can take comfort knowing that you are exhaustively taking the very best care of yourself. THAT is a big, big deal! Love and hugs to you.