Tuesday, November 19, 2013

The Cone of Uncertainty

Anyone living along a coastal area knows about the cone of uncertainty.  These are widely ranging swaths of land that lie in the projected path of a hurricane or typhoon.  The cone starts small, at the point of landfall, then widens exponentially to include every blade of grass or bird that could possibly be impacted by the storm event. 

At one point prior to Hurricane Ike the weathermap showed IKE sucking up heat as it moved across the entire Gulf of Mexico, then striking the Houston Ship Channel and barreling up a narrow corridor until it landed directly on my house. I was sure of that. This was not a happy moment. I crawled into the bathtub with the dog and ate almonds and chocolate while the storm ripped all the leaves off the trees for miles around and anniliated large sections of beach and homes in Galeston, which suffered the most devastating damage.  

Hurricane Ike's Cone of Uncertainty 

This came back to me again because I've been living in a cone of uncertainty for the last month or so.  My thoughts darkened.  I felt like I was sheltering in place, treading water, as I waiting for results from tests and as importantly, learning what those tests meant in the context of my life, my health. This is especiallly important in cancer, where an errant fact might look bad yet fit in a cohesive narrative on an indivual level.  From what I knew? I could be in trouble. Or not.  And I wouldn't know the answer for a number of weeks.  
            At the end of October metastatic breast cancer was found in the lining of my stomach.  My oncologist had ordered an endoscopy to check out my gut's workings when I continued to lose weight and suffer from bouts of nausea and vomiting without rhyme or reason.  None of these episodes could be related say, to a batch of minor food poisoning or a 24-hour virus running through the community. 
            Metastatic lobular breast cancer,  this little darling of a breast cancer I have (only comprising from 10-15 percent of all breast cancers) can weasel its way anywhere, sneaking along through the lymph system and even wedging between the lining of the stomach and the muscle. When my oncologist explained this yesterday, drawing a decent stomach, esophagus and upper intestine, he penciled in how the cells line up between the two layers. From there it was a mental skip and a jump to grasp what is described medically as a "plastic-type" presentation. As the cells accumulate the stomach itself becomes more rigid and and lead to the symptoms I've been experiencing. 
           But the stomach mets did not represent progression.  No progression.  In cancer land there's no better music to one's ears.  The stomach mets were mostly likely present when I was diagnosed with metastatic disease in April.  These would not have become apparent on CT until they formed tumors and given the symptoms I've already had, I shiver to imagine how ill I would have been by then. 
           So the good news definitely is no progression.  The obvious news is learning to live with a stomach that's been damaged by cancer.  Some, but not all, of the damage will ease as Femara continues its work.  An aromastase inhibitor, which works by blocking the enyme that allows androgen to convert to estrogen, Femara has done remarkable work in my system in six months, nearly knocking out the extensive lymph node involvement I presented with.  This is like removing the tree trunk from all the limbs. The more we continue to shut down the feeding system, the fewer malignancies -- like these monsters creeping along in my stomach -- will be there to find.  
          In the meantime my disease falls back into the manageable, chronic category. If I continue to take the daily medicine I could be fine for many, many months.  I'll have scans again in eight weeks.  But no one is a fool, either.  There are some indescriminate lesions we want to remain boringly, indescriminate. We want them to stay as boring as they are now. 
          I'll watch, yes, I'll be mindful, but I certainly am not qoing to stick around and wait for trouble.  No one can say when the next inevitable progression or drug resistance will occur, when the cone of uncertainly will hover again.  All of us know that cancer can change its mind in a moment, fake out your immune system, and even recruit a few buddies to help its do its dirty work.  We do what we can. Stay rested, eat well, exercise.  Don't give the creeps an inch.
          I felt hope growing yesterday, small, but true, and deep. 

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LKPheartsfood said...

I often say boring is beautiful-- and I'm so happy to hear "no progression!"

A New Me said...

I have been dealing with my own stuff, and I know how dark things can become. I was glad to hear recently that there was a regression of my progression. They didn't say things were clear - but it felt like it would have if they did. Every part of this journey means something. And sometimes even status quo can be a good thing. Sending you lots of love. I will send you a message on FB, perhaps you can look out for it?

Jody said...

No progression is how "preto/chango" used to make me feel as a kid -- like good things are in the air! Thank you.

And I agree, the status quo can indeed be a very good thing.... even a regression of a progression. The other day I was explaining to a friend how amazing it is that you can have all this cancer in your body, causing symptoms, occasionally wreaking havoc, yet all your blood counts are fine and for all intents and purposes you are all right.

And we know, from seeing so many others, how quickly that can change, hence the darkness. Thanks A New Me:)

katie ford hall said...

I'm tired of you being so darned special, Jody! Glad to hear this one gets to be chalked up in the not-quite-so-special category. More boring stuff for Jody, please!!


Nancy's Point said...

Hi Jody,

So relieved you heard those words, "no progression". Love the sound of that. I'm sorry your stomach issues are so troublesome for you though. There's so much to balance isn't there?

Here's hoping things stay extremely boring for a long time to come. Big hugs.

Linnette said...

I also have lobular which metastasized to the orbit of my eye. I was dx'd 4 years ago with mets out the gate. I had a bilateral mastectomy, an oophorectomy and have been on Femara for almost 4 years and I have been dancing with NED just as long!!! Good luck to you! This ugly disease can be treated as a chronic illness and long term survival is definitely possible!

Stacey said...

I'm smiling for you, Jody. Boring? We'll take it a million times over interesting in this case. Love to you!

Unknown said...

"No progression. In cancer land there's no better music to one's ears." I've been dealing with a different kind of cancer which has reached STAGE 4 (Confirmation May 30th 2013) It's Colorectal Cancer which started in the Colon. Lost close to 3 months of treatment time,2 MONTHS dropped by my PCP with the blood test & ONE month to confirm what was really going on...I have a total of FOUR tumors,the original tumor plus the THREE that have reached my liver! The cancer also was found to have reached my upper clavicle area.

After ONE PET test which needs to be reexamined, CT SCAN every 3 MONTHS, recently done on Nov. 18th, waiting for results. Positives? My CEA count reached 757 is down to 1.1!!! I had to endure 2 months of radiation AND at the same time Bi-weekly chemo which I will continue to intake the rest of my life it seems.

Two months ago, I had a 2nd opinion & I TRUST my current oncologist & staff. After having my PCP drop the ball, we felt I needed to get a 2nd opinion as we move forward...

I am waiting to hear the very same words of "NO PROGRESSIONS" in the coming days or month....

Each Cancer is different and everybody handles "things" differently. I KNOW THIS, we are BOTH in this fight for our lives against CANCER...May you find strength,positive,caring thoughts along the way!

From day ONE, I've been trying to stay as busy as I physically can & stronger emotionally even though I've had my moments of doubt....

I will KEEP you in my prayers in your fight...


Jody said...

Thanks for all your comments and encouragement to stay as boring as ever. I intend to stay that way.

And Linette, lobular cancer has the distinction of weaseling into so many places but I'm thrilled to hear that you are doing so well. We need to hear more stories like yours.

And Silver, I will in turn hope that you hear "no progression very, very soon.

I'm glad you all stopped by.

Julie Goodale said...

Sorry I'm so late seeing this - have had a very sketchy on-line existence lately. But boring no progression is good to hear (although I know it's no longer news to you). Wishing you all the best for the holidays & new year!!

Jan said...

I'm in that same waiting mode, Jody. Can we call the disease chronic if we've had more than two "clear" CT/PET scans? I'm not sure what chronic means in this context, but we forge on ahead, don't we? Great post, and Happy New Year!! XOX