Update

On January 2, 2015, I had my first infusion of Ixempra.  There was an issue with the proposed clinical trial in that my starting it would be delayed due to some changes in the principal investigator (doctor in charge of trial) and the trial drug's dosage.  Dr. Coscio was of the opinion that I did not have time to wait for the clinical trial to get back underway.  So, new chemo it is!  Oh wait, didn't mean to sound that excited about it.  Well, maybe I was ... in a way ... at first.  But now that I'm IN it, NOT SO MUCH.

I was able to squeeze in a family visit to Louisiana between Christmas and New Year's.  I ate at almost all of my favorite restaurants, spent time with family and even saw some old family friends I hadn't seen in some time.  We reminisced over old pictures, and we talked and laughed a lot.  My mom made some of my favorite meals, just for me.  I didn't have much of an appetite, but I ate smaller portions to enjoy all the variety.  (Actually, I did pretty darn good on my mom's fried shrimp ... which I paid for, later!)  You know it's bad when I passed completely on beignets from Café du Monde!

It was a needed trip, and I was intentional in my planning of it.  My coughing, fever, feelings of fullness, and increasing chest pressure hinted at what was to come.  I wasn't well.  I was starting to wonder if everything I did, everything I ate, every place I visited, every conversation I had ... was going to be "the last."

I've been living with this chronic, deadly disease, and its many different treatments, for many years.  But only within the past year has the disease started to cause me problems in a noticeable, physical way.  I've had subtle respiratory symptoms before, over the years, during two occurrences of pleural effusions.  These resolved with the success of new treatments/chemos.  There is no cure for cancer, so "successful" treatments are always temporary.  Some last longer than others.  Those are the good ones, the ones you wish would work forever.  Some caused side effects that I could live with, some caused side effects that were simply unbearable.  Such is the progression of stage IV cancer.  If a drug works, you stay on it until (a) it no longer works, or (b) the severity of its side effects outweigh its benefits.

Last Spring I needed radiation to the spine due to tumor growth into the epidural space, causing leg weakness.  The Summer was the season of severe neuropathy caused by the chemotherapy I was receiving.  So severe that I could hardly walk, get in and out of cars, or feed myself.  The Fall was when complications of lung metastasis necessitated the removal of nearly 2 liters of fluid from the lung.  This fluid was causing incessant coughing, shortness of breath and difficulty swallowing, eating and drinking ... which led to muscle/weight loss unlike any I've experienced.  All the while, scans and tumor markers showed slow yet steady progression of the cancer, despite attempts with multiple drugs to slow or stop it.  Some areas might be stable, while others showed slight growth, and still others saw brand new tumor.

So where am I now?  I'm anxiously waiting for the new chemo to be effective.  The fluid in my lung has again increased (says the chest x-ray.)  I feel an intense pressure from inside of my chest, pushing outward.  When I lie down, I feel like there's a ton of bricks on my chest.  Pain medicine helps, but it doesn't last all night, so I wake up with much discomfort.  I'm not sure how much time the doctor intends to give this new drug to work. 

In the meantime, we have shed a lot of tears, and we worry about the coming days, weeks, and months.  It's hard on the whole family, especially Danny, when I'm weakened and laid up.  I pray a lot for him and the kids.  He is having to do everything in addition to caring for me.  The past 10 days feel like an eternity!  Yes, I'm uncomfortable, but like I always say, I've got the easy part.  I have the gift of knowing that I'll be with Jesus when my earthly time is up.  It's my family who has to live under this cloud of cancer, and eventually, without me.  Please pray for us!