Wednesday, February 18, 2015

Update and a Little Rant

Hello all.  Happy Valentine's Day, Happy President's Day, and Happy Mardi Gras!  That should cover everyone!  Yesterday I received my 2nd king cake of the Mardi Gras season, thanks to my sister-in-law Gwen.  SO GOOD!!!  I miss my hometown and parades and all the music & food that goes along with them.  I'm sorry that I'm no longer able to provide my kids with the whole carnival time experience.  Growing up, I thought everyone had Mardi Gras holidays from school & work.  Good times.

Sigh ... here in realityville ... the ups and downs of stage IV cancer treatment have been pretty intense.  I was so hopeful after what seemed like an amazing response to my first course of Ixempra.  However, how I felt after my second course was much less than amazing.  I kept waiting for that "I feel alive again" moment, but it never seemed to come.  Coughing, difficulty digesting food (even in small quantities,) pain, and evening low-grade fevers were all worsening.  I've become a prisoner in my own home, alone, only venturing out for a select few kids' activities and church if I determined that my white cell counts could be depended upon to provide my body with adequate protection from infection.  Either of these (the worsening of symptoms or the all-day every-day staying home) could plummet even the strongest person into a depressive state.  Together they have really done a number on my mood and level of hope.  It is hard to keep going.

My mom checks in on me with daily "How you feeling?" texts.  I have a lot of people praying for me and who care about me.  It's just difficult to keep answering the questions with honesty.  If you're lucky (wink wink) and you're really close to me, you might get a super-honest "crappy" or "not so great."  If you're an acquaintance, you'll probably get something like "could be better, but could be worse!" or "well, I'm here" (such as with church friends, because it IS actually a HUGE accomplishment to get myself up, dressed, and to church.)  Sometimes it gets old to keep burdening the family with my brutal honesty, so I say "I'm good" or just don't respond to the text, in which case they KNOW that you  must not be well, because they know you that well!  At times you think that even a not-so-close friend seems like she genuinely wants to know what's going on.  You take a chance, you start telling her, but you sense immediately when you've said too much:  her eyes start to glaze over and you think she is probably regretting that she even asked the question.  You end the conversation immediately, and then you're not sure who feels more ill-at-ease, you or her?  The real kicker here is that sometimes I, the patient, end up comforting her, the "friend" because something I said has jarred her, or confused her, or made her start tearing up.

The reality is that MOST people DON'T understand this life of mine as a stage IV breast cancer patient.  They don't have to, and it's not their fault, either.  It's something that you have to experience to "get."  (And I don't wish that on anyone!)  I know people who, by some strange phenomena, have lived to adulthood without ever having had cancer touch their lives in any way.  They know nothing about it.  Some are curious and some are not.  I appreciate when they tell me that they don't even know what to say, because they've never known anyone with cancer.  God bless them!  And, wow.

Others (most people, I think) have had limited exposure to cancer patients, so what they do know is, well, limited.  Most folks know this:  you get cancer, you get chemotherapy, you lose your hair, and when your treatment is over, your hair grows back and you live happily ever after.  What most folks DON'T understand, is how someone can be on an "endless" treatment regimen.  Back when I was a newbie stage IV cancer patient, I myself didn't even "get" this, because I hadn't yet experienced it.  It's uncommon.  Over the holidays, my hair grew back some.  (it was great!)  But when I got sick again, and lost my hair again, I heard someone say "I thought she was finished with her treatments!"  Anyway, I'm not sure how I got off on this tangent!  Guess it's just a peeve of mine.  Guess it can be hard to grasp how someone could receive cancer treatment, continuously, for over 15 years, like me!

So ... the latest.  I'm awaiting insurance approval to begin a new chemotherapy combo (Gem-Carbo) as soon as possible.  The Ixempra was not working, as evidenced by my very, very ugly CT scan from last week.  Had my second thoracentesis done yesterday which, sadly, I looked forward to all weekend!  How pitiful is that that I could hardly wait to have excess fluid ("very large pleural effusion") drained from my lung??  My first thoracentesis back in October offered me so much relief from the incessant coughing and difficulty swallowing & sleeping, that I couldn't help being hopeful that it would work the same way this time.  Perhaps it's too early to tell.

Very, very nervous about yet another chemo drug.  And I'm really getting tired of it all.  I'm worn out!