Thursday, May 19, 2011

Lymphoma's Hall of Fame

Mr. T - from The "A" Team, known for his catchphrase "pity the fool"

Junior Wells - Chicago blues harmonica player, famous for playing with Muddy Waters, Buddy Guy, Bonnie Raitt, The Rolling Stones and Van Morrison

Jim Ryan - most notable accomplishment as Illinois Attorney General was his $9.1 billion settlement from tobacco companies

Joey Ramone - lead singer of the punkrock band The Ramones and a counterculture icon

Jacqueline Kennedy Onassis - wife of the 35th President (JFK)  and First Lady of the United States.  Book editor, art contributor and fashion icon. Forever a symbol of her husband's assassination, even after marrying shipping magnate Aristotle Onassis

Gene Wilder - stage and screen actor, writer, director and author.  Famously known for roles in Willy Wonka, Young Frankenstein, Stir Crazy, Blazing Saddles, and The Woman in Red.  Married to Gilda Radner of SNL fame

Charles Lindbergh - flew first solo non-stop flight from Long Island to Paris in 1927.

King Hussein of Jordan - remembered as one who helped forge peace with Israel 

Paul Allen - multi-billionaire who co-founded Microsoft with friend Bill Gates

Paul Azinger - PGA golfer and occasional on air analyst, PGA Championship Winner 1993

Ed Bradley - American journalist best known for 26 years of award-winning work on CBS News program 60 Minutes

Gabriel Garcia Marquez - Columbian Nobel prize winning novelist and author of One Thousand Years of Solitude and Love in the Time of Cholera

Mario Lemieux - former Canadian NHL forward who played 17 seasons as a forward with the Pittsburgh Penguins, widely regarded as one of the best players of all time

Roger Maris - an American MLB right fielder who, during the 1961 season, hit 61 home runs for the New York Yankees, breaking Babe Ruth's single-season record (set in 1927). Maris' record would stand for 37 years

Sidney Lumet - American director, producer and screenwriter who was nominated for Academy Awards for 12 Angry men, Dog Day Afternoon, Network and The Verdict

Golda Meir - the 4th Prime Minister of the State of Israel, the "Iron Lady" of Israeli Politics

Andres Galarraga - Venezuelan former MLB first baseman for the Montreal Expos

Rowdy Roddy Piper - of World Wrestling Entertainment fame

Fred Thompson - actor, former U.S. Senator, 2008 Presidential candidate, columnist and talk show radio host

Tuesday, May 17, 2011

Recognizing Cancer

I've been spending time lately surfing the web, checking out other cancer and lymphoma blogs.  I've found many, many excellent writers, be they family members, significant others, or most inspiring and enlightening to me, the cancer patients themselves.  Wow. There are so many people writing about cancer.  And yet these are just a few of the thousands with cancer who choose to blog about it.  They are the minority - most folks are going through their treatment and staying out of the public eye so to speak.  Despite the traditional and stereotypical effects of chemotherapy not everyone looses hair, looses weight or looks emaciated; we might walk right by them and not even know they have cancer.  Besides, what does a typical cancer patient look like?  There are some generalities yes, but believe me, everyone I've met and seen is different and our trip hasn't been at all to specifications.  

One thing I've learned for sure is that I (we) never saw it coming.  And by IT, I mean the end of our life as we knew it.  It makes me wonder, will you see it when it comes your way or the way of someone you love?  I'm not suggesting that Phil and I, more than anyone else, should have necessarily recognized cancer in the medical sense when it landed on our doorstep.  (Heaven knows we worked this baby up as best we could before he was finally diagnosed).  No, I'm talking recognize in the way our lives changed radically and forever in an instant kind of way.  Will you recognize that your road is forking and there is no stopping it?  See that you are turning in a new direction, are at a cusp, a crossroads, a zero hour where-after you and yours will never be the same.  And know that how you handle it from there will make all the difference in the rest of your lives and the lives of those around you?  And it is going to happen to some of you.  Statistically, probably many of you.  And I'm sorry.

For me, one gift in all of this load of crapola is sharing myself and my struggles, my insights and my aspirations ~ what I am learning through it all.  Perhaps so that you will not be caught unaware.  So you will not be (too) unprepared.  Every journey is personal and not one is the same but there are similar Truths in the human experience.  Everyone suffers, everyone bleeds and everyone requires a lot of grace, love and compassion along the way.  I have the privilege of living in relationship with some pretty wonderful friends and family and between Facebook, letters and the blog I feel connected despite the miles and the separation.  This has been an intense and lonely road for me.  For all of us.  But God has continued to show up and so have you.  Thank you, each one, for reading along and for praying, for commenting and for seeing us through.  For being with us in our zero hour and our new life.  

     "If you can find a path with no obstacles, it probably doesn't lead anywhere."  
          Frank A. Clark

Wednesday, May 4, 2011

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.

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.
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.