Thursday, March 31, 2011

What's the Word

The way things are worded can make a huge difference.  In my Facebook post at the beginning of this week I said, 
It's official! Chemo is working - Phil was transfused last night with RBC's. He's feeling a bit low but kicking butt and taking names! "

By posting the words "It's Official! Chemo is working", at least 30 people had read words they "liked" and the post earned over 10 comments regarding Phil's continued battle with cancer.  Reading the comments showed me that our friends were still engaged in this drama in a big way and I was frankly shocked by the number of responses. I quickly realized they were just happy to be hearing good news.    

When I posted, I was merely trying to convey the start of another session of chemotherapy.   I wasn't expecting to garner that much attention.  After all, my blog hasn't generated many comments lately.   Being in the middle of this heroic journey, I am a bit fatigued and numbed to a lot of things.  For instance, in posting that chemotherapy was working, I failed to anticipate the response of joy and happiness on your part.  I don't experience the highs of joyousness so much because I am usually on guard for the inevitable lows and have grown accustomed to the roller coaster, having seen it up close and personal.  You don't live it intensely and intimately day in and day out and so of course are counting on the updates and are checking in for the newest details.  I wrongly assume you have grown tired of hearing the repeating details like we have grown tired of living them.  Sorry that I forget these things and again, have been too long in keeping you up to date on Phil's progress, good, bad or ugly.

Now, concerning the inevitable...   Last night Phil ran a temp of 100.7 which has to be dealt with when you're on chemotherapy.  His head hurts, he feels nauseated and his appetite is down.  So today brings urine and blood cultures, a chest x-ray and the loud banging in the MRI to check out his sinuses and brain once again.  There is no obvious explanation for his fever so they'll look everywhere.  His phone rang just awhile ago and it seems even Dr. Mansfield would like to seem him today.  So, at 4:00 p.m. we'll wheelchair across to his office so the good doctor can take a look in Phil's sinus.  Poor guys going to have a rough one today.  He's really feeling up to it at that, don't cha know.  Just yesterday he was thinking he might be going home today too.  Sorry Charlie, you just bought yourself at least a weekend stay in Club Med.  All food and drinks are on-the-house you lucky son-of-a-gun!

While my initial intent was to alert you to Phil beginning chemotherapy again, perhaps this responsiveness to Phil's chemo status will serve a greater purpose.  Once again, we each have an invitation, an opportunity.  For some it's to join in with us who stand shoulder to shoulder, as we carry the burden and lift up our brother and friend in prayer as he fights one more time with the intruder.   For others it's to deepen the commitment of prayer and friendship and connection.  

For me it's to remember that I have a life and that I am not alone in it. I have incredible friends even if they feel far away at times, or my life is off the normal tracks and I don't have time or energy to see the ones who are near.  Lastly and importantly, it's also to remember that I have a say in what my perspective on my life will be.  

Saturday, March 26, 2011

Latest Update

Phil got the green light to start chemotherapy again this Monday, March 28th.  This will be part 2B (of a probable 5-6 cycles).  He will receive methotrexate and Neulasta (prescribed to reduce the risk of infection and increase the WBC count).  The methotrexate can take a while to clear out of his system so he will be starting first thing in the morning and staying through at least Thursday and possibly the weekend.                                                                                                                                                                      

Monday, March 21, 2011

Embracing REAL

When I turned 40 a few years ago, a switch flipped inside of me and I suddenly stopped caring so much what people thought of me.  Oh, I'm still concerned with making a good impression and I enjoy being liked as much as the next gal, don't be fooled.  But I am blessedly free from the anxieties and pressures that motivated my actions and shaped my opinions of myself for much of my youth.  God knows I wasted a helluva lot of time giving a shit what other people thought of me, doing what all women do, "comparing my insides to other people's outsides".  Maybe I was just slow on the uptake but it took me what seems like an inordinate amount of time to realize that the only approvals I needed were mine and God's.  Since He spoke the earth into motion and made me, in His image, with my mind, my emotions AND my Teutonic psyche there must be something that He made that way on purpose.

With that in the back of my mind I've been thinking about how transparent my life has become.  One of the sequelae of living a life alongside someone with cancer is that I find it hard to make small talk.  I used to be really good at it.  "Establishing rapport" is what we call it in medicine and having spent 8 years working in family practice I got quite good at it, this art of medicine.  It came to me fairly naturally by personality and for me the way in to a person's REAL stuff was always through their small talk.   During a medical visit small talk makes transition easier for people - it is small after all and let's one build up to the BIG of what's real and serious or delicate or vulnerable or you fill in the blank.  What's difficult. Or painful.  Or taboo.  Or just plain hard.  But now, small talk just seems like what it is, small.  It no longer feels appropriate when I speak about my life.  Questions have REAL answers after all.

What this looks like then is the following: I find myself at the check-out counter and the cashier asks me what my plans are for "this beautiful day", without missing a beat I'll tell her I'm taking lunch to my husband in the hospital because the food sucks there.  Or when my uber-chippy Starbucks barista asks me how my day's going, I usually pause too long before saying something REAL like, "I'm wiped out actually".  What almost always ensues is a dynamic and intimate conversation about cancer, lymphoma, chemotherapy, the tragedy that is having a young husband dealing with all the above.  And almost always, a brief testimonial to God's grace and mercy throughout it all comes about, inevitably because they bring it up.  Nope, no small talk for me, just the unvarnished truth of what's going on in my moment.  

 I was truly glad when I turned 40.  Not, mind you, because I got to start feeling achy and aware of my diminishing returns year after year but because I was finally at home with the REAL on so many levels.  Now this cancer journey has given me new opportunities to embrace the REAL in my life and I am blessed and encouraged by each encounter, whether serious, delicate, vulnerable, difficult, painful, taboo, or just plain hard.  I'd say sorry world, it sucks to be you when you cross my path on an especially tough day and ask how I'm doing, but really, I think the world is fortunate.  Not because of me and what I'm putting out there particularly, but because the world needs authenticity, more REAL and less small.  I find it refreshing and judging from the number and depth of my encounters I'd say the world is clamoring for it.

Wednesday, March 16, 2011

In his heart a man plans his course, but the LORD determines his steps ~ Proverbs 16:9

I've been getting a lot of kuddos lately and folks are often mentioning that my blog is great, yadda yadda and that reading it makes them feel like I am talking right to them.  I'm often encouraged to write a book.  Just this weekend I saw my elderly aunt Phyllis who said I was "quite a writer" which came as quite a surprise.  1) I had no idea she was reading my blog and 2) it is sprinkled with profanity.   Not knowing what "quite a writer" meant coming from my 90 year old Lutheran organist aunt, I held her compliment in my mind alongside other nebulous descriptors like "interesting", "unique" and "amazing".  However, when she left the party that evening she whispered in my ear to keep writing and said she liked my "strong words".  It seems that no matter their age or station, people appreciate the honesty with which I describe my situation.  From your comments I know that many of you enjoy experiencing the cancer journey vicariously from my insider's perspective.  While it may sound that I'm suggesting you enjoy rubbernecking on my experience, that's not exactly what I mean.  

I believe there is a fundamental fascination we have as human beings when there is an accident or tragedy unfolding in front of us ~ we watch because it's fascinating and we keep watching because of the important questions that are triggered inside of us that need answering.  We watch because it isn't us.  Yet as we get older and wiser we understand that it could easily have been us and might be us the next time.  As I watch the crisis in Japan I hear a myriad of questions about our own preparedness, security, personal safety and planning swirling all around.  The opportunities for anxiety mount and are many.  Yet so too are the opportunities for my strength and God's grace to show themselves.  

When I am on the outside looking in on someone else's tragedy, the questions I ask myself are "how does he/she do it every day?", or "would I be able to do what they are doing?", or "would my faith get me through?"   As you watch Team Conrad I wonder what your questions are and I hope and pray that you are not backing away from looking at them.  There is so much to learn about yourself and God.    

Now that I am on the inside those hypothetical questions of mine are getting real time answers.  "It is what it is", a fundamental Truth I accepted long before Phil got cancer.  I do whatever is in front of me every day because honestly, how else does one get through life?  By doing what isn't?  By trying to make things happen that are out of one's control?  By pushing a rock uphill and just wishing for things to be different than they are?  I strive to be fully responsible for my choices in life thank you very much, but, "In his heart a man plans his course, but the LORD determines his steps" Proverbs 16:9.  Having said that, I graciously lay it all at the foot of Christ to get through the day.

Dan Millman in Way of the Peaceful Warrior says " Every positive change--every jump to a higher level of energy and awareness--involves a rite of passage. Each time to ascend to a higher rung on the ladder of personal evolution, we must go through a period of discomfort, of initiation. I have never found an exception."  That has been my absolute experience so why should this rite of passage be any different.  I fully expect to come out the other side of this crucible wiser, stronger and definitely more aware.  I already am in a myriad of ways.

One thing is for sure.  I could never write just any book.  It would have to be a memoir.  To create characters and give them life and personality and create a story and plot lines and dialog... probably not going to happen.  I'll stick to what I know how to do ~ talk about what is happening in my life, my mind and my heart.  To write about the examined life I live and to encourage you in living yours similarly.  But my story isn't finished yet and I've no idea how it will turn out.  Until I do there will be no book, only these musings and  writings.  I trust that I will know when it is finished, but until then, there is nothing like knowing oneself intimately and giving of yourself, loving freely and vulnerably.  May God continue to direct my steps on that path, and you in walking on yours.

post script  
The Conrad brother's, Jamie, Phil and David will be traveling to Stone Harbor, New Jersey this weekend to spend some family time with their mother Margaret and their father, James Conrad, SR. who has entered hospice care for end-stage prostate cancer.  Please keep the entire family in your prayers as they travel and meet together to share fellowship this one last time.  


Tuesday, March 8, 2011

Chill Pill

With all the prescriptions and medications Phil has been given, this may be the hardest pill he's had to swallow.  Waiting.   

He's been asked to wait at least 3 weeks to start his next round of chemotherapy.  He was supposed to start today in fact, but his sinuses just aren't ready for this regimen's portion of chemo, methotrexate and ARA-C.  Dr. Mansfield examined Phil last week and found too much swelling and infectious residue to sign off on treatment at this point and asked him and Dr. Kossman to wait at least 2 weeks.  The 3 week point was chosen because Mansfield won't be back in town until then and we all want him around in case anything goes south during treatment.  Having been around this block a few times we've learned it's a good thing to have the best people in place, just in case.  So, 3 weeks it will be.

Now you might think that Phil would be singularly happy about having 3 weeks to take a break and have a breather.  I would have thought so too.  To be perfectly transparent, since it means that I get a break as well, I am totally fine with it, but he's not thrilled.  But before I go questioning him I have to remember that I'm not the one with cancer in my body - in my bones and in my blood.  He's got the ever present reminder within him and despite his fatigue and the rigors, wounds and inconveniences of battle, most days he just wants to get on with it and see it to the finish.  His lives a dichotomous life right now, desperately needing to rest and replenish in order to live, yet wanting to take the fight to the disease (within himself) which knows no rest.  

So, is there really ever any rest for him?  For his mind or his spirit?  Maybe for the body there is when he's laid up or recovering from surgery.  But what about his mind?  What happens when one let's up in there, or in one's spirit?  I don't really know, having never fought for my life.  I do know that Phil, despite recovering a herculean amount of strength and stamina, is still often profoundly fatigued and the reason isn't always clear.

Today we have his brother Jamie and family coming to visit and "the buddy's" from high school, Brad Bruckman, Tim Spence, Jim Kramer and Jon McCauley are coming in another week.  God doesn't makes mistakes and since His timing is perfect I can't wait to see what will happen for Phil during this time.  It makes perfect sense for him to relax and really enjoy this time with them.  The sinuses will heal, I don't have any concerns about that.  But we all need a breather, all of us.  Whether we know how to handle it or whether we welcome it, it's here.  I for one have so much to do and get caught up on that having friends and family here could streamline that.  I'm looking forward to fresh faces around, to stories and laughter.  I can't wait for the inevitable falling in love that my kids do with Dad's friends and vice-versa.   And I really look forward to Phil forgetting for a while that he's sick.  That's what this waiting could be all about and that would be just fine.

Thursday, March 3, 2011

Far from Perfect

Thank you for the comments, your texts and to those of you who called since the last post.  For the rest of you, I am feeling better today.  Although there are moments when I am completely spent and want no more part of this entire business, they are only moments and once I have expressed the pent up frustrations and emotions then I do indeed feel better for awhile.  My emotional silo becomes full and, like a pressure valve on high, needs to be purged in order for the rest of me to function properly.  Regularly bleeding off steam just has to happen and it can come in the form of acupuncture, exercise, spa treatments, crying jags or the tried and true pity party.  This last one seemed to take life down a notch, for now, and that's all I can ask for. 

I try to deal with my emotional life as it comes but it sure gets hard to name every feeling, process it in real time and find a place inside to hold it.  See, I've got this Teutonic (read German) brain and that means I am blessed/plagued with a mind that must have order dammit and must have precision dammit in order to feel at ease in the world and within myself (I know, get on the couch...been there!).  Without this essential scaffolding in place, there is room for that sneakiest of sneaks to creep in, anxiety.  If you can claim any genes from this vast Anglo-Saxon pool to which I refer then you might recognize these tendencies in yourself. I'm grossly generalizing I know, but I personally thank the marauding Germanic hordes for my psychological OCD -- you may have some indigenous lowland cow herd or metalsmith to pay homage to.  Gesundheit!

No, you say?  Perhaps you're more of a nurture vs nature person.  No matter, there's evidence of dysfunction all around.  Walk into any Barnes and Noble and you'll find an extensive self-help section on the subject.  If books aren't your thing I'm sure there's an app for it for your smart phone or iPad.  My point is that I'm far from perfect.  What I knew from experience as I threw my little pity party was that after the party was over I'd still be dealing with my hard wired issues.  So, now I'm back at it, shoulder to the wheel to learn new ways of being, responding, receiving my life, albeit amidst a bit of a maelstrom at times.  This emotional OCD business doesn't work for me, it never has, in fact it beats the crap outta me.  Life doesn't fit neatly into a box because life isn't neat -- at least mine isn't.  And I hate to point out the obvious, but future neatness doesn't look promising either.  

As Phil heads into part 2B of chemo again next week, right on the heels of surgery and all the crap complications from chemo 2A, I know he'd love to hear that all is right in my world but hey, I distinctly remember part of our marriage vows saying something about promising to disappoint each other.  I'm claiming that one right here and now and taking it all the way to the bank.  But I also vowed to be there in sickness.  It is true, we are both depleted, and none more profoundly and completely than Phil.  This is hard territory -- trying to have our needs met while finding that balance between being the spouse, raising children and seeing to the self without losing compassion, grace and identity.  A tall order which requires everything of us.  There are children watching.  There are characters being formed.  There are lives at stake.