Thursday, March 27, 2014

Update

My next treatment step was going to be a clinical trial.  I read over the literature and immediately felt overwhelmed by the trial's crazy scheduling requirements.  But after discussing with my family, decided to pursue it, thinking it was an opportunity that I didn't want to pass me by.  Well, at this week's visit with the research nurse and Dr. Moulder, I completely reversed my decision and am NOT doing the clinical trial.  Here's why.  It was explained to me that it's a Phase I trial, meaning this will be the first time the drug is being tested ON HUMANS.  That fact really gave me pause.  The nurse said "They are not looking for response, nor expecting any.  What they are looking at is what side effects does it cause, and what will the dosages be."  Wow.  Alrighty then.  A real-life human guinea pig.  Mmhm.  And then there was the fact that it could take 2-4 weeks before the testing on my tumor tissue could take place which would determine if I even QUALIFY for this study.  THAT was the real kicker.

Excuse me, but, I am already over a month out of my last chemotherapy drug which STOPPED WORKING!  My last scans were bad.  I need to be in treatment like, yesterday.  I understand that I couldn't have begun any sort of chemotherapy while on radiation.  That's not allowed.  And I concede that last week, I felt like I was dying, so that wouldn't have been a good time either!  But now that I'm feeling like I might actually live through these radiation side effects, I am ready to move on and start kicking cancer's butt again.  I don't want to give the cancer more time to gain the upper hand.  Gotta get a grip, keep it in check, kill the beast!

Over the weekend, I was able to stop taking Imodium daily.  Not to say that my bowels are back to normal.  They are not.  But they did improve to a level where I felt I didn't need to take Imodium.  I started being able to eat more than liquids and soft, easy-to-digest carbs.  In retrospect I probably advanced my diet a little too quickly.  (A girl gets hungry for real food after so long on the diarrhea diet!)  Yes, I am sure I did, because just yesterday, well ... let's just say I had some "regression" in my gastrointestinal improvement.

Overall, I am doing much better both physically and mentally.  I still feel an increased level of stress, but that is to be expected with what's going on.  I am having to take on much more both at The Pink Ribbon Shop and at home and with the kids' activities since Danny is working full time at an accounting firm.  Except that I am NOT able to do these extra things or even what I used to do, because I've been sick.  It's really been difficult.  Danny has been going in to PRS in the evenings and weekends to get the office work done.  And thankfully we have Lisa who fulfills our orders -- our bread and butter, so to speak.

We pray a lot, and we try to live our lives in a way that follows God's will for us.  We wonder if we have made the right decision in having Danny get a full time job.  Of course there is never a good time for your business to take a nosedive, but all at the same time as my cancer worsening?  Really God?  Oookayyy, if that's what you want, we'll do it.  He was able to get a job so quickly, we couldn't help but think it was what God wanted.  For whatever reason, or reasons we may never know or fully understand, we have to believe that since we prayed so much about it, and it came so easy, that it was meant to be.  Also, we are moved into our new office and it's nearly complete.  It's such a pretty, peaceful, country place!  But sadly, Danny doesn't get to enjoy it all day, or hardly at all.  God's timing.  Only He knows.  Who are we to question?  Trust me, we DO question ... A LOT!  We are only human, so at least God knows of our weaknesses and inabilities.  Still ... these past weeks have been very trying on us, our family, our kids, our marriage.  Prayers still needed on all fronts!

My sister-in-law, Lisa, accompanied me to my Dr. Moulder visit regarding the clinical trial.  I'm so glad I was feeling a little better, and so was able to be much better company than I would have been the week prior, or even just a few days before.  We talked and laughed a lot, which I needed.  Been stuck in the house for too long -- not good for me.  Lisa brought a notepad, and even already had some questions jotted down for the doctor.  So sweet!  And responsible!  So glad we are family.  She and I were definitely in agreement that the timeline of the clinical trial was not the best thing for me, at this time, considering the state of my progressing cancer.  It was a huge relief to me that it seemed totally like the right decision!  I was sure.  I had no misgivings about it, and I knew that was God's doing.  Honestly I wasn't too keen on the clinical trial thing.  This particular one, not just clinical trials in general.  Even after Dr. Moulder came in and explained that of course we look for response and hope for response.  Duh!  The whole point of clinical trials is to try out new drugs and hope they work!  But this is not the clinical trial for me, right now.  However she did mention another one that may have potential for me in the future, and she is adding me to the waiting list.

Tomorrow, Friday, I will start on a chemotherapy drug called Eribulin (aka Havalen.)  This, they say, is similar in class to Abraxane which I tolerated fairly well for over a year.  And it has similar mild side effects.  It's a 15-minute weekly infusion that's given 2 weeks on, 1 week off.  At my chemotherapy "home," the MD Anderson Woodlands Campus.  Actually looking forward to moving on!  Hopefully this one will work.  Quickly, for a long time, and without debilitating side effects!

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