A Time To Be Silent and A Time To Speak

When I was in grade school my report cards frequently came back to my parents with little comments like "talking in class is a problem", or "quite the social butterfly".  And I remember my parents always telling the story of our family going camping and me wandering off to the nearby campsites "making friends" while they looked around trying to find where I'd gone.  In fact, being in a family of six children, I'd say I grew up with A LOT of talking.  I distinctly remember a lot of talking at the dinner table and loud board games and even louder pool parties.  Seems there was always something to say and someone to say it.  


Now, I crave my quiet time.  My son woke up the other night, disturbed in his sleep by the incessant singing of a mockingbird right outside his window at 3 a.m. He was so exhausted and miserable that he sought refuge in our bed far from "the noise".  For me, it was so much quieter than the noise of details and anxiety vying for attention in my head that I found it soothing and beautiful and it quickly had me back to sleep (in our cramped quarters no less).    


I do find it interesting now, as the spouse of someone with cancer, as someone who spends a lot of time in the hospital, how quiet I have become.  I realize how quiet I've become when I haven't blogged for awhile.  It seems deafening, the quiet.  I haven't totally figured it out yet - why I stay silent, sitting on the newest of information about Phil.  My little book of notes is just sitting on my bedside table, waiting to be turned into a post.  I am fully aware that I am the conduit, the gatekeeper of sorts for the friends and loved ones waiting to hear about Phil's latest turn of events.  I am fully aware but remain silent.  It's strange how at times, when he is in crisis, I can't blog fast enough - sometimes posting every day.  At other times, a week or more will go by.  Clearly there is some anxiety management underway.  


For starters, I think staying quiet is both a way to stop the process from moving forward for a while (so to speak).  To keep it on the page, closed up in my book of notes.  It is a very primitive form of control.  OK, I've heard the latest, taken that bite and chewed it up.  Now I just close the book on it, literally and wait until the next appointment and THEN I'll open up the book again ~ as if nothing can happen as long as I don't open up that book, or speak about it.  Very wishful, magical thinking.  Well, on with the latest in reality then....


Phil's pleural effusion was tapped (drained) last week and 550cc was removed.  That's half of a liter, as in half of a huge Coke bottle worth of fluid.  A LOT!  It was mostly old blood and WBCs and the overall results were Good but Confusing.  When Phil was neutropenic (had no WBCs) something in his pleural space caused a lot of inflammation/irritation.  He was also thrombocytopenic (low platelets) and couldn't clot off bleeding from the irritation hence the blood in his pleural space.  When he was given Neulasta to stimulate WBCs he made a lot of them and they rushed to his pleural space too.  They also gave him lots of IV antibiotics to cover the possibility of infection.


There were no signs of bacteria, fungus, Mucor, malignant cells, or lymphoma in his effusion and the cultures are not growing anything either.  There is nothing that looks like an active infection.  The confusing part is what caused the effusion in the first place.  He could have had an infection that cleared with the IV antibiotics in the hospital and since there still isn't anything growing in the cultures, we may never know.  So, he sits tight and waits to see how he recovers.  There is no treatment prescribed and he waits on some longer term tests like TB, and fungal cultures.  Fortunately, he is feeling better every day.


NOW THE BIG QUESTION?  WHEN TO TREAT WITH MORE CHEMOTHERAPY?
Practically, Dr. Kossman would like to treat Phil in 3 weeks.
Philosophically, not knowing what is going on in his lungs, whether that is a resolving infectious process or what, he doesn't want to just bottom Phil out again right away.  Plus, as he said to him last time, "I've almost killed you now three or four times".  He wants to give Phil time to recover just enough to take him (and whatever residual lymphoma may be there) back down hard.  For now, Kossman will wait until Phil returns from his father's memorial service in early June to start the next round, #5 of a probable 6-8.


And that brings me to the most interesting part of our discussion.  Do you know why Phil gets more chemo, even though his bone marrow is "normal", his chest mass is "gone" and he is in "remission"?  Here's how Dr. Kossman explained it.
     
     CHEMOTHERAPY 101
Say you have a 1 cm mass, like a lymph node.  That = 1 Billion cancer cells.
Take enough chemotherapy to kill all of the cancer cells but the size of a pencil dot or the period at the end of this sentence.
That would leave you with 1% of 1 billion cells which would = 10 MILLION CANCER CELLS left.


That is why cancer is a fucker if you don't mind my saying so.  Not going to stay silent on that one.