San Antonio Day 1

Imagine this scene:  I’m sitting at my laptop in Hooter’s, fingers slightly stained from hot wing sauce.  My beer glass is empty and bad pop music is blaring in my left ear.  I have papers covered with thick, incomprehensible medical jargon spread out all over a table that is size-appropriate for six rotund construction workers and the back of my laptop is resting just on the edge.  The burly men around me are trying not to stare impolitely when I wipe tears from my eyes.  I have to laugh because it’s just so…. Improbable.  Ah, what a journey we’re on.

This morning’s visit to the CTRC was surprisingly rushed.  We got in (late) at 9:15AM and left around 12:30PM.  To summarize the day, we got nothing but good news.  But it’s been fascinating.

What We Learned
Maggie’s liver is functioning within normal parameters today.  To test that, her bilirubin was measured via a blood draw this morning.  Bilirubin, fascinatingly enough, is what makes your bruises turn yellow and, less preferable situations, causes your eyes to turn yellow from jaundice.  It is also why your pee is yellow.  More yellow in the urine and less in the eyes is the goal. Thus, the lower the number in the blood, the better.

Her bilirubin today was 0.92 out of a normal range of 0.00 – 1.00.  It has been up to 1.5-ish, which is border-line bad.  The doctor qualified Maggie’s liver dysfunction as “mild.”

The liver, as you probably know, acts as a filter for the body and is a key part getting rid of the crap the doctors keep putting into Maggie’s little body.  Almost all the clinical trials require a minimum level of liver functionality, especially with the Phase I studies.  Since the goal of a Phase I study is to determine the maximum safe dosage of a drug (or said the other way, the level at which the drug becomes toxic) it’s important to know how well the liver is functioning.

In case you missed it, this is the good news:  Maggie’s liver is mildly dysfunctional.  Sweet!  (Probably better than mine, I think, as I order another beer.)  Good news #1.

Available Options
Since Maggie’s liver functionality was key, that opened us up to four Phase I trials:
• Patupilone
• Enzastaurin
• Pazopanib
• AMG-479

Each has a different effect with equally-varied treatment processes.  Some are infusions.  Others are pills.  Some pills require all day stays in the clinic.  Some infusions last only 30 minutes.  What’s consistent, however, is the size of the microscope focused on Maggie during the process, or I should say, on Maggie’s body.  It’s very clear that by choosing this path, we are moving from “person” to “Petri dish.”

So, we have options.  Good news #2.

Both the doctors (yes, we had TWO doctors asking questions – never a good sign, really) said that since we were already getting radiation treatments, we are probably going to have to wait four weeks after those have completed before we could begin other treatments.

It took a mere four days for the “grapes” in her neck to develop into a debilitating problem.  Can we make it for four weeks without treatment?  If you don’t count the previous CPT-11/Xeloda treatments, we are approaching 60 days of Free Cancer Play Days which scares the hell out of me.  But I’m not sure what to do about.  Apparently, a significant factor in the treatment of this crap is timing.  This kind of stuff will keep you awake at night wondering “if we just woulda’…”  And that kind of thinking will buy a psychiatrist a new car.

How Is Maggie?
Maggie is ok.  Definitely not good, but ok.  She hurts pretty much constantly now.  Her neck has become less of an issue but something around her mid-chest has really become a problem.  The challenge we’re facing is the careful metering of the pain meds.  Too many, too quick and up they come.  Any pills on a not-full-enough stomach and up they come.  And too many, in general, and Maggie just goes into a haze.

The Maggie I know and love only comes out so often now.  It’s the toughest part of this journey I’m personally dealing with.  Oh hell, I’m sugar-coating this.  It’s just heartbreaking.  She’s almost always in either bad pain or under a haze of painkillers.  So, either way, my best friend is lost somewhere out there in the ether.  And it just breaks my heart.  I get brief glimpses – in the mornings, today at lunch, sometimes around supper.  I miss my best friend.  Words to describe the sadness I feel are beyond my reach.

Our hope is that the radiation will continue to do its job.  It’s working on her neck area.  Maybe the breast/chest area, the biggest problem now, is holding off and will respond soon.  We hope.  We’ve been increasing the pain meds almost every other day, a pattern I hate to continue.  It’s better that I miss our talks than my lovely wife spend any time in pain.

We can keep her out of pain: Good news #3.

Moving Forward
Tomorrow we have a 9AM meeting with START, another clinical trial shop here in San Antonio.  They’ll have other options and I’m looking forward to what we learn.

And tonight, we have supper with a good friend, Sam, and his family.  I’m looking forward to seeing them all.

12 thoughts on “San Antonio Day 1

  1. You’re dealing with a lot of stuff … just trust in your love and know that the best decisions will always be the ones you will make.

    Hold Fast, I’m thinking there was a very real man at hooters & the burly guys were just humbled by the experience.

  2. Good news! And a huge sigh of relief! I know that all is definitely _not_ right with our world yet, but to get this kind of news when we were holding our breath for something else … wonderful! Thanks for sharing it promptly! Many of us will sleep a little bit easier tonight because you did. Hopefully, you and Maggie will also have a calm, restful, and hopeful night as well.

    I’m focusing happy thoughts, much love, and continual prayers on you and Maggie!

  3. As I let out a big sigh and wipe away some tears, I am so happy there is some promising news. A great big squeeze to you both.

  4. Yay for the liver fxn! Pray for wisdom and guidance as there are so many options to choose from now.

    I “third” what annonymous said about the Hooters men.

    Hugs to you both!

  5. Thank you so much for keeping up with the blogs. Do you all need a place to stay for free when in SA? I have family there and they have 2 guest bedrooms empty. Just thought I would offer:)

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