Sunday, November 16, 2014

Update ... and here's to more birthdays!

Well it's been several weeks since my last post, and I am feeling better than I have in a long time!  I seem to have more energy (although I do get worn out and short of breath on exertion.)  I don't have any mouth sores, and the neuropathy symptoms have almost completely resolved.  Of course, living with the gray cloud of cancer always hanging over me, I can't ignore the fact that I'm on a dose of Afinitor that's 50% less than originally prescribed.  So I feel bad, for feeling so good.  I feel as if I'm not doing everything I can to fight the cancer ... like some sort of failure as a cancer patient, not being able to tolerate the full dose.  I communicated this (well, not in those words) with Dr. Coscio and she said "It's OK to feel good.  Maybe you're feeling good because the cancer is improving."  She can always find comforting words for me, even when I'm stressing!

Backtracking a bit, to bring you totally up to date ...

Once the thoracentesis was done it was over four weeks until my next appointment with Dr. Coscio... which seemed to me like an awful long time!  In the meantime, the burning question I had about the thoracentesis needed to be addressed, so I took to the MDA messaging system.  Why did my lung NOT re-expand after the procedure?  Answer:  Possibly because it had been squeezed for so long that it wouldn't readily expand back to "normal."  Perhaps returning to chemo will help it heal, soften, and re-expand.  Okay.  I can accept that, but I still don't like it!

The follow-up thoracentesis was done two weeks after the first (still had not seen the doc.)  The report noted that the pneumothorax had resolved, and that I had a "moderately large left pleural effusion."  WHAAAAT??  I was so confused.  If the pneumothorax had resolved, did that mean that my lung had re-expanded to fill the space?  Or had more fluid filled said space?  Since this report made no comparison to the previous x-rays done on the day of the thoracentesis, I wanted to know if this was a re-accumulation of fluid, or if some fluid was leftover in the pleural space, even with having the procedure done.  Answer from Dr. Coscio:  the area had filled with fluid again.  :(  NOT WHAT I WANTED TO HEAR!

This was very discouraging, to say the least.  I had read that pleural effusions related to cancer are highly likely to recur, but I did not expect it to happen so quickly.  But interestingly, I was feeling better.  None of the symptoms I was having prior to the thoracentesis had recurred.  Virtually no coughing, no fever, ease of breathing, etc.  It didn't really make sense.  You know me, I'm always trying to figure it all out!  The doctor said that if I started having symptoms again, we would "address it."  I presumed she meant by repeating the thora and/or changing chemo's.

Finally my doctor appointment day arrived.  The four weeks between visits really seemed to stress me out.  I guess because I had so many questions and worries.  Even though we communicated by messaging, I guess I needed the face-to-face.  Call me a needy patient!  Under the circumstances I suppose my feelings were understandable.  I updated her on how I was feeling, and my concerns about the quick recurrence of the pleural effusion.  She showed me the "films," digitally, of course, on the computer screen.  She also pulled up my previous CT of the chest, for comparison.  Even though fluid had returned, the volume/size of it was nowhere near the size it had been right before the thoracentesis.  That comforted me.  It also explained why I wasn't having the symptoms I was having before.  The pleural effusion, although recurrent, wasn't nearly as "large" as before.

My tumor marker (CA 15-3) had increased from 16.7 on 9/17 to 20.8 on 10/28.  Dr. C felt that it was too early to tell if the new dose of Afinitor was working or not, based on the tumor marker alone.  So, she advised me to continue on the Zolodex, Aromasin, and Afinitor, as previously planned.  However, considering my concern about not doing enough to battle my cancer, and my request to possibly increase the dose a little, she said I could TRY to take 10mg once a week and 5mg the rest of days of the week.  I agreed to try.

When she first prescribed  the 50% reduction of Afinitor, I only had the 10mg tablets, and it was going to take at least a week to get the 5mg tabs in from my "specialty pharmacy."  So I took a 10mg tab every other day until my 5mg tabs arrived.  At around day 7 of this regimen, I began to develop a few mouth sores.  Yikes!  My 5mg's arrived on day 9, so since then I've been on 5mg per day (except for one day per week that I take 10mg.)  The mouth sores have improved and disappeared!  Yay!  I tried to think of some way to explain all of this, but really, what purpose would that serve?  I need to just go with it ... I'm in treatment, I'm feeling pretty good, with no mouth sores.

And now, I wait.  Because of all the recent cancer-related activity, Dr. C decided to scan me with just a two month interval instead of the usual three.  I'm scheduled for the usual CT's, bone scan, and labs in the first week of December.  Anxious to find out if the new dose is working!!

Meanwhile ... I just celebrated another birthday!  Who cares what the number is, the fact is, I just celebrated another birthday!  I'm doing everything I'm capable of doing, and trying to live life to the fullest.  My life's not perfect, by far, but at least I'm here to live it.  As 2014 is winding down, it occurred to me that 2-3 times this year, I thought I was nearing the end of my life.  But each time, God pulled me out and said "Nope.  It's not your time to go yet."  It was just not His will for my life to be over here on earth.

Sooooo, here's to more birthdays!