Inward Bound

Sitting around with friends in college I heard legendary stories about this "life changing" program called Outward Bound.  Many were the students who told of a cold night spent huddled under a bush or make-shift shelter, testing the limits of their physical and mental endurance in order to make it through their solo experience (24 hours spent alone in nature).  It sounded both awesome and intimidating.  I'm certain that if given the opportunity to experience Outward Bound back then, I wouldn't have chosen the journey.  The idea of being completely by myself for 24 hours, let alone in the middle of nowhere, did not sound remotely appealing.  A physical education major, I think I'd have been alright with the physical demands of the program.  However, my inside world, although very familiar to me, was not a very stable nor well organized place at that time.  I had a good idea of what I'd find if I had to go plumbing there for strength and resilience on a dark cold night during my solo experience and it wasn't comforting.  The mental and spiritual test was what I feared and I didn't want to be pushed to see what I was made of - I already had an inclining and it wasn't pretty.


I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago.  Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy.  I no longer have an unstable, unorganized or un-examined inner life.  Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey.  In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.


Speaking of Phil's journey, there is news to share.  He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways.  He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea.  He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff.  Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain.  During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest.  This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was.  An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.


Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband".  I'm all too familiar with this drill.  This happened the morning after the CT scan before I went in to see Phil.  He reminded me again about the liter of fluid and the lymph node in Phil's chest.  But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm.  Ah shit.  Not good.  Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size.  Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan.  In other words, it grew quickly and right on the heels of very aggressive chemotherapy.  Ah double shit.  Not good at all.


Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil.  It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched.  He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up.  While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way.  To question the wisdom of His ways now would be folly.   


Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend.  So far so good.  We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way).  He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy.  When we know something we will share it with you.  Until then, please continue to cover Phil and our family in your generous prayers.


As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us.  We're going deeper still.


Proverbs 19:21  
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.

Familiar Surroundings

Well this feels familiar.  I'm sitting in the big over-inflated chair that makes obscene noises when one sits down too quickly (those who've visited know the one) and I'm watching Phil sleep.  It's day two of chemotherapy and we're in the groove.  This is round 5 of what we hope will only be a total of 6 and our lives are in a bit of an upheaval.  I suppose that isn't saying much for us, but really, it's true.  It's crazy enough that Phil drove himself to this hospitalization yesterday and checked himself in.  Truthfully, at this point he could probably get this thing rolling on his own.


Perhaps upheaval is putting too strong of a spin on things compared to where we've been before.  You be the judge.  As Sunday evening rolled around I had Bennett with a hideous cough, Olivia who needed to go to school the next day, Phil who had to be at the hospital at 7 a.m. the next morning and only 1 of me.   Hence Phil driving himself so I could nurse Bennett and get Olivia where she needed to be.


It just so happens that we finalized plans this week to move into a new house on July 1st. Now, I need to take advantage and pack up as much as I can while Phil is in the hospital and the kids are out of the house.  It is a hard fact that on Thursday at 1 p.m.( when the kids get out of school) any sense of order and control I have managed to cultivate will be in serious jeopardy.  Thursday is also my father's 80th birthday and this Sunday is Father's Day.  My son, if he is hale enough to participate, has a baseball game on Saturday and then there are the requisite end of school parties on Wed and Th which "we can't miss Mom!".  Oh, and did I mention that my check engine light came on today?  Phil 4:13, I say again, Phil 4:13.


On the plus side,  Phil is doing GREAT!  He is feeling well so far and is tolerating the chemotherapy as well as usual for day 2, only having a few minor twinges of nausea.  I set up a MealTrain for him so we've had some lunch and dinner brought in by friends because he is literally sick of the hospital food.  During the end of his last stay he became nauseated and gagged when they brought him the last few trays so we don't even bother with them anymore.  Dr. Kossman was kind enough to write orders that allow him to eat outside food as long as his blood sugars stay steady and he's been doing so much better eating normal food!  Tonight I believe my nephew will be bringing in Goat Cheese and Arugula Pizza.  Very Nice.


Stay tuned...

Serendipity

I love serendipity. The way it changes everything around the moment it happens, and after.  Because it happens so seldom.  Because it is to be cherished.  According to Wikipedia, serendipity is when someone finds something they weren't expecting to find. In the simplest of words it means "happy accident". 


As I was driving Bennett home from baseball practice last week we drove past a For Rent sign on a street we pass several times in our comings and goings every single day.  You know, the slot you drive in where you barely notice anything because it is such an ingrained routine, a rut your car just goes down while you mindlessly ride along?  That day I actually took notice of the sign and realized it hadn't been there that morning.  I made a quick U-turn and told Bennett we just had to quickly look.  As it turns out the house was the size we needed, there was an enormous yard and the price was right.  More importantly, we were the first to call.  That right there is a miracle.  We made arrangements to see it the next day and the rest is history.  I won't bore you with the details of the transaction but I will share some reflections I've had about this particular rental since we decided to go with it.


It isn't much.  It's old (1934 old) and rustic.  It's kinda funky (propane tank painted green in the front yard).  If left without a bit of TLC it could easily slide into white trash territory. And perhaps that's why I love it.  It is a bit of a diamond in the rough that the current tenants haven't appreciated.  There is so much character in 'This Old House'  that we can't wait to bring out.  The hardwood floors and solid pine walls and ceiling beams need to be showcased.  Our furniture and northwest art is going to be awesome.  Also, although the yard hasn't been tended at all, a little water and a green thumb will make it beautiful again without much effort.  Lastly, the acreage is full of avocados: an entire grove of trees stands behind the house, ready and waiting for the kids to explore, climb and build forts in - just like when I was a kid.  


The house is small but we'll make it a home with our love and our things.  The front yard is fenced and we'll finally be able to keep the promises we made to the kids about puppies and kittens.  And the kids will be able to have another taste of my childhood climbing the avocado trees and exploring the fields behind the house.  As I reflect on where we've been and lived in all the years we've been married - from our one room cabin on Lake Jordan with no heat but a wood stove to our custom built 2800 sq ft home in Seabeck to a 900 sq ft apartment to "the big house" here at Hidden Oaks, I'm thankful for all of them.  Each has shown us how to live differently and how to appreciate what we've had.  And what we have now is what's important so really, we can live anywhere.  We just want to get busy living.




  

The Land Between

We are in The Land Between.  Phil is in remission but he's facing more chemo.  He's ready to go back to work but not really able.  We are ready to enter into full-fledged living and a social life but we're just not quite there yet.  We'd love to buy a house instead of pouring all our money into rent but that's probably several years away.  Phil's hair is growing back but he's just going to lose it again in a few weeks.  The "Cancer Chronicles" go on.


This past Sunday we visited a new church (Journey Community Church) and were surprised by the sermon - it wasn't given by the pastor but was from last year's Global Leadership Summit titled, "The Land Between" by Jeff Manion.  Journey will be sponsoring the summit here in San Diego and were giving a preview of what is to come in August.  Well, you know when a sermon seems preached just for your situation?  This one had Sally and Phil Conrad written all over it but certainly could have been for anyone going through a trial, enduring any type of suffering or difficulty, or just plain hurting.  Know anyone like that?  Know anyone breathing? 


The Land Between referenced the story of the Israelites taken out of slavery and into the promised land (which is importantly described as "flowing with milk and honey").  Instead, they wander the Sinai Desert, discouraged, depressed and angry for 40 years.  God provided them manna to eat three times a day, every day and eventually the people were about to riot!  The Land Between is fertile ground for complaints. Moses, the leader of these people prayed to be relieved of duty because it was so horrible.  The Land Between is fertile ground for meltdown.  But God heard his cry for help and provided others to shoulder the burden.  The Land Between is fertile for God's mercy and provision.


Prior to moving to CA, there were a few years during which I struggled mightily with God's goodness and whether he even listened to the prayers of his people.  I had a questioning and rebellious heart.  Where did he go when I was in The Land Between then, huh?  Those "40 years" were damn long and very painful indeed. I believed in God then yes, but I didn't really BELIEVE God.  Didn't believe He'd do what He said He'd do.   And before that, from 1995 to 2004 when I lost a total of 8 pregnancies?  That was definitely The Land Between, the wilderness of sorrow, pain and loss. Watching my friends get pregnant and grow big bellies and deliver and celebrate Mother's Day.  That hurt for 7 years before our son Bennett was born.  After 3 more miscarriages we adopted Olivia from Taiwan. Going through the process of adoption and feeling the losses and suffering and sacrifice of a birth mother broke my heart in yet another way and I learned that God always answers prayers, just not always in the way or timing you expect.  He wastes nothing and no experience for our benefit, hard as that is to handle sometimes.  So, I'm a repeat offender at complaining, meltdowns and mistrusting God.


And now.  For 10 months now I am in The Land Between again, along with some people very dear to me.  Fortunately I have finally learned a few things and God has been patient with me.  This time through I am clinging to God's grace and mercy as He provides for our needs and gives us shoulders to carry our burden.  Amazingly, in God-style, He has done this despite my complaining and my occasional meltdowns and my wondering when it will all end.  The difference this time? No riotous heart.  That is a complete waste of time and besides it takes too much energy.


Phil and I are on a cusp and we can feel it.  We are so anxious to be done with this whole chapter and move on to the Promised Land.  But we also know that we have to go through our paces. He has to finish chemotherapy and suffer the slings and arrows of that particular torment and I have to sit patiently by and continue to tread water (suffering the slings and arrows of THAT particular torment).  We BOTH went through the aforementioned trials together and know enough about God's character to know He can be trusted.  He has seen Phil through this trial so far and must have some incredible plans for him.  He must also have a great rental in mind for us because we clearly haven't found it yet! 


In the past God has given us the capacity to do without more and this just may be one of those times.  Maybe it's strength to endure.  Who knows?  But I do know The Land Between has been fertile for Transformative Growth and that is always welcome.  

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

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

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.