Tuesday, February 26, 2013

SNIPPETS FROM MY LAST DAY


Lunch with my team on the South 40, with not one, but TWO vegan burger choices!

Retelling the story of falling on the ice when I was interviewing at Wash U and finding mocha in my hair still an hour later!

Bequeathing gifts  

Very special earrings

"I'm a hot mess!"

Handing over the candy machine

Tulips when I got home

Wrapping up last things right as it was time to leave

Lots of Facebook love




Giving the team an Eliot bell!

Ringing the F*** out of that bell as I left at 3:00!

Sharing rainbow Sharpies with someone who loves them as much as I do


Hearing that the therapy-chocolate was busted out in my office as soon as aI left

One last cup of coffee from the DUC

An awesome apron

Plans for a massage soon

Knowing I will see them all again soon, as they are too dear to my heart to be away from for too long!

Wednesday, February 20, 2013

Back on the Optimism Train!

Sorry for the week-long cliffhanger!

We saw the doc a week ago and left feeling much better than when we went in.  I just don't deal well with the unknown.  I need facts and a plan.  My appointment gave me both of those things.

My scan showed a few new small tumors on my liver, but also showed that my old tumors hadn't flared back up; they were still dormant.  It means the clinical trial was an epic failure.  However, that gave us a new piece of information about my cancer, which is always helpful.  The clinical trial was focused on blocking all estrogen pathways that the cancer might be using to grow.  Since the clinical trial didn't work at all, that tells us that the cancer isn't using the estrogen to build, so we don't need to be worried about my estrogen levels, ovaries, etc.  We are now going to look at how to block different pathways.

First, though, I've started an oral chemo to shrink the tumors.  This new chemo, which I get to take at home each morning/night, should be easier on my bone marrow while hopefully keeping this cancer contained and possibly even shrinking it a bit.



Today I've now been taking the new chemo for a week.  My labs today showed that all my liver enzymes have either stabilized or lowered (yay!).  My white blood cells are looking a little low, too, so my pattern of taking the chemo is being altered just a little, and I'll get my blood work checked again next week.  Here is Jason entertaining me while waiting at the doctor's office today:  "They shouldn't leave us in here with nothing but time to waste and expensive gadgets!"

I hope you all are having a great week!  We are expecting a heck of an ice storm here in St. Louis tomorrow, so stay safe everyone!

Tuesday, February 12, 2013

Someone Get Me A Slicker!

Short post, but wanted to let everyone know that the doctor called today and said that my intuition was correct and that the clinical trial is not working.  He wanted to let me wrap my head around that for our appointment tomorrow.  We'll discuss the next steps then.

It's a bit of an emotional ride here right now.  There's a good chance they will throw me back into chemo, which isn't a big deal at all to handle day-to-day.  However, chemo is a poison that not only kills cancer cells, but kills your bone marrow, and there are only so many hits your bone marrow can take from that stuff before it shuts down, which is NOT a good thing.  So, it's not a long-term solution.

Jason reminded me today that our job, as I've said many times before, is just to keep fighting until some smart whipper-snapper doc figures out a long-term solution, so that's what we will focus on for now. I've re-energized my juicing (thanks, Scott V.) and am lowering my sugar intake.  Doing whatever I can on my end.

Thanks for all the thoughts, wishes, hugs, love and happy energy!  It is all felt and appreciated.

Friday, February 8, 2013

Looking for a Sign

I'm not a sailor, but I'm sure there is some nautical analogy for what I'm experiencing today.  I am lost at sea, looking for a sign to tell me which direction I'm sailing, what I'm sailing into.

Today is Friday, and I'm scheduled to see my doc on Wednesday to check my liver enzyme numbers.  As a reminder, these are the three enzymes that were elevated last year at this time that ended up being the lighthouse signal that something was wrong and the cancer had returned and spread.

At my last couple of appointments (10 days ago, and a week before that), my liver enzymes had begun to elevate a little, barely into the official "high" range, which of course, made me a little nervous.  The doc told me he was clearly NOT nervous about it, because it was common on these meds.  Whew.  I asked how, in the future, if they continued to elevate, we would know whether it was a sign of cancer growth or just a side effect of the medicines.  The answer was that we could always do a CT scan if needed to check.

Today the nurse called to talk about a shift in the doc's schedule for Wednesday.  In talking, we decided maybe I should come in today to get my labs drawn so we could see if I still needed to be on the doc's schedule for Wednesday.  I went in, and my enzymes have taken a bigger jump up.  Still, hard to know what that means.

Another measurement that gets checked periodically are my tumor markers.  This is a general "cancer measurement", but it has a lot of variability, so is only somewhat useful.  Well, my tumor markers have gone up, too.  The nurse told me, though, that when cancer cells are dying, tumor markers can jump up then come back down.

So... I have lots of data points and no idea what they are pointing at.  The winds are changing.  Either things are getting better, or they aren't.  Either storms are coming or we'll see blue skies.  For now, I'm holding on to the ship and trying to appreciate the ocean.










Thursday, February 7, 2013

Hit Me Where It Really Hurts

Rory is sick and it is one of the most difficult challenges with cancer.  See, cancer can make your immune system a little weak, and I'm in a phase where I have to be careful not to get sick.  Add this scene to that background:

Today is Rory's 7th birthday, she has a fever, and she wants Mommy to snuggle with her.  AND I CAN'T.

Luckily, she is old enough to understand "the doctor says I have to really try not to get sick".  Still, I WANT to snuggle with her and help her fall asleep.  I want to let her curl up with me so I can read her a book.

One day when she and Jason were both sick last week, I had to go stay at Debbie and Harvey's for 24 hours and leave them to fend for themselves at home, for my own protection.  For now, I'm sticking with my kid for her birthday.  I'm washing my hands a lot.  I'm keeping my distance. I'm only kissing the top of her hair.  I'm not getting on her bed.

Cancer sucks.