Tuesday, January 27, 2015

Latest News

Well, hello!  Cycle #2 of Ixempra was 4 days ago.  This cycle is already proving to be better than #1.  Day 4 of cycle #1 consisted of an emergency trip to the clinic for an infusion of IV fluids.  Then, for the following four consecutive and highly inconvenient days I had to make a trip to the clinic to receive injections of Neupogen for low white blood cell counts.  I felt like you-know-what, and I allowed myself to get dehydrated by not eating much or adequately drinking ... which then made me feel even worse, i.e. lightheaded and weak(er).  This time I've willed myself to eat and drink, even though my appetite is poor and I don't thirst much.  Although ... me thinks it's not all in my head or my will, for that matter.

My doctor used the phrase "tumor burden," which I understand to be the body being overwhelmed with the cancer inside, thus causing my many symptoms.  I believe it played a large part in my body's struggle to handle the first cycle of chemotherapy.  What I was experiencing were the effects of chemo ON TOP OF the effects of cancer.

Amazingly, I could sense some improvement in my chest pressure/pain less than two weeks after my first Ixempra infusion.  Could it possibly be??  Talk about HOPE!  Slowly I was able to eat a little more, and gradually I increased my activity level as well.  In the past I've referred to myself as the Energizer bunny, because I seem to just keep going and going.  I keep getting clear messages that God isn't finished with me yet.  Is this, perhaps, another one of those times?  Guess I may be getting ahead of myself.  In any event, if I AM the Energizer bunny, I'm on a sluggish, "low-battery" pace!

Dr. C was thrilled to hear of my improvements.  When I communicated my surprise at how quickly Ixempra seemed to work, she said she was not surprised.  That when it works, it works quickly.  Woohooooo!

My labs were good to go.  Go on to cycle #2, that is.  The only lab value that wasn't available yet was my tumor marker, the CA 15-3.  I was so anxious to see how far down that baby had moved!  Dr. C assured me she would message me when the result was in.  The message arrived just before dinner.  I quickly opened it, but the results weren't what I had hoped for.  In fact, it was shocking.  I was crushed, and not just in spirit.  I felt an immediate drop, a heaviness, in my chest.  Tears welled up.  It was 47, up from 28.  It hit me hard, I suppose, because I expected it to have gone down (at least a little!)  I'm thinking, how could this be?  Am I really feeling better?

The message containing the tumor marker result also came with an explanation from Dr. C.  She explained that an elevation sometimes happens after an initial chemo infusion.  I desperately clung to that!  And then I hit the internet, of course.  It turns out that what she said was true ... imagine that!  I was, however, more pleased with the more in-depth discussions online than the doctor's one sentence.  But such is the nature of "messaging" as opposed to a face-to-face conversation.  What I found was that the level could go up if a cancer is "very sensitive" to a certain chemotherapy treatment.  The chemo causes many cancer cells to die and release large amounts of the marker into the blood, which will raise the level of the tumor marker for a short time.  Now we're talking!!

The plan is to re-check the CA 15-3 in a few weeks.  If still elevated, I'll be scanned (with the usual CT's of chest, abdomen and pelvis.)  But hopefully, prayerfully, the tumor marker level will correlate more closely to how I'm feeling, which is not too shabby.  Prayers are working, I truly believe that ... I'd like to see some objective evidence of it, as well, in the form of improved scans and labs.  No matter what happens, I know I and my family are in God's hands.

ADDENDUM:  I feel the need to clarify "not too shabby."  In this case, it's a very relative term!  I am home all day, and I feel a sense of accomplishment when I complete even the menial of tasks, such as paying a bill.  Or making a phone call.  Or bathing.  Or going through mail.  One recent day I moved a few photo albums from my bedroom onto the bookshelf in another room.  Wowza!  I missed church Sunday because I wore myself out taking a shower.  (Note to self:  Next week, shower the night before church.)  I now only take pain medication at bedtime.  I now only take nausea medication about once a day.  I am proud of myself when I have a "normal" poop.  I am even happier when I poop every day.  These are improvements, people!  Ahh, the little things.

Monday, January 12, 2015


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 CafĂ© 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!