Wednesday, March 4, 2015

My latest

It's come to my attention that my last post may have seemed too harsh to some.  I re-read it, and I wonder why I feel the need for people to "get" stage IV cancer.  Maybe I just want them to get "me" in the place I am now.  Danny has always told me that I care too much about what others think about me.  I suppose that's true!

Yesterday was a sad day.  My mom left to go home to Louisiana after spending over a week here with me.  I know she has her own work to do and others to care for at home, but it was so nice having her here!  She kept me company during these long, boring days I'm having at home, and she helped our family in countless ways.  Mostly we did a LOT of talking, which was awesome.

On to the cancer update ...
A couple of weeks ago, after receiving the dismal CT results by phone from Dr. Coscio, I quickly agreed (of course I did) to a change in chemotherapy.  Having time to mull over the CT report while awaiting insurance approval, AND having a more uncomfortable recovery from the thoracentesis, I kind of sort of fell into yet another sad period.  Because this is all so hard!

The latest thoracentesis was complicated by my uncontrollable coughing fit during the procedure, which had the doctor behind me pretty exacerbated and nervous.  As if I could control the urge to cough!  He ended up removing the needle after only draining 1500cc this time.  For a couple of days afterwards, I had soreness (actually, pain) at the needle insertion site that I did not have the first go round.  Yet again this time, my lung did not re-inflate after the fluid was removed.  And unfortunately, this thoracentesis did not afford me the relief that the first one had in the way of eating easier, breathing easier, and coughing less.  :(

A couple days after the CT result phone call, I received a phone call from the doc's APN who informed me that the new chemo was approved and could I come in on that very day for the first dose.  At which point I started crying.  Balling, really.  I felt like I needed to schedule a visit with the doctor to discuss everything.  At the time I thought a phone call with results was just fine, but it was far from fine.  I was tired of everything, scared of the new chemo and how was my body going to take it and I don't know what to do and ... really it was very unlike me to put on such a display of emotion, but I guess maybe it was long overdue.  Or something!  Later that night, during my regular text conversation with my mom, I asked if she would come visit me from N.O.  I was definitely losing it.  She was here within a few days, because a mom knows when her daughter needs her mom.

Needless to say I did not go for chemo on that day and instead, scheduled an appointment with the doctor for the following Monday.  This time my mom accompanied me to my doctor appointment instead of Danny, only because only one visitor was allowed in the exam room and chemo room, and this was her opportunity to meet my caregivers for the first time.  I'd been wanting her to meet these wonderful people!

Dr. Coscio entered and asked if I wanted to see the CT scan.  Of course I did.  She showed us the gigantic pleural effusion and the resultant shrunken condition of my left lung.  To get an idea, hold up your left hand.  That is my right lung.  Now imagine my left lung, which is about the size of a quarter in comparison to the right lung.  The remaining space is filled with fluid.  She showed us the thickening nodules in the left pleura, indicative of progressive metastatic disease.  She said "what's right is left and what's left is right when you're looking at the scan."  I silently acknowledged that she was saying this for my mother's benefit, for which I was thankful.  Because I already knew this fact.  You know, having seen so many of my scans and having a medical background and all.  Then she pointed and said "There's your heart."  And to myself I'm like, yep, there's my heart.  Again, nice of her to walk my mom through the scan like this.  THEN she said "It's supposed to be on the other side."

A wave of OMG washed over my whole body, and my eyes filled with tears, but I did not let them fall.  Somehow, I held it together while I absorbed the fact that my. entire. heart. was displaced to the right side of my chest by the large pleural effusion that had long taken over the left side.  The CT report had stated that I had a "new mediastinal shift to the right," and I knew that in the past, my esophagus had shifted, causing me to have difficulty eating.  But this visual, seeing and hearing the words that my heart was in the wrong place, was so bizarre and jarring ... let's just say one can never forget it.  Ever.

After some measure of silence, I was able to ask if it had relocated back to its proper position after the thoracentesis.  She attempted to pull up the post-thoracentesis chest x-ray, but the computer wasn't cooperating and we weren't able to see it.  I take that as God's way of saying "You've had enough today, Kim, you can't handle any more."  Dr. Coscio went over the two new chemo drugs I'd be starting and I signed consents, completed the necessary paperwork, and received prescriptions for this and that.  In a short while, I would be heading over to the clinic to have my first infusion.

Once my mom and I were alone again in the exam room, we talked and discovered that we each had had the same overwhelming flood of emotion at the same time.  A sense of disbelief but knowing that it was true.  Thoughts of "I've never heard of anything like that before," but there it was, we both saw it, plain as day.  The realization that my situation was much more dire than ever before.

So I'm a go with Gemcitabine and Carboplatin -- had my first combo dose last week and Gemcitabine alone this week.  Had to step up my anti-nausea medications last week, and I'm very tired.  I seem to be coughing a little less, but I don't want to get my hopes up too soon.

I went to church this past Sunday, because it had been a few weeks, and also because my GIRL was playing drums this week and my big GIRL was singing!  They are so awesomely talented.  And beautiful.  And smart.  But I digress ...
I made what I now know was a big mistake by allowing my mom to drop me off in front of church and walking into church alone.  By the time I reached our family's pew, I was extremely short of breath and felt like I was going to pass out.  My heart was pounding and I couldn't sit down fast enough!  Evidently this was the farthest  I had attempted to walk (and probably the quickest) in a while.  I sat, then I cried, mourning the sad, sad condition of my ailing body.  That I couldn't even walk into church without getting out of breath!  It took a long, long time for me to get ahold of myself and stop the sobbing.  With Danny's help and reassurance, I finally did, though, but not without upsetting my kids and mom.

Note to self for next doctor visit:  ask if she's ever seen a patient's heart move to the right side.  Just curious.