Monday, January 31, 2011

Chapter 2: And So It Begins

Well, here we are again, at Alvarado Hospital on 3 South, such familiar surroundings.  With the non-descript wallpaper, the tile floors, the blue bedspread, the smell of hand sanitizer, the pump humming along in the background as it delivers the meds, and the same lame-o food.  Thankfully, we also have the same friendly and welcoming nurses and staff.  Abby our nurse for today was also our nurse the first day Phil started chemo way back in August, so it is with a bit of deja vu that we begin Chapter Two. 

It's been three months since I was last here; me and many more of us, holding vigil and praying that Phil would survive the surgeries and complications that attended his first full round of chemotherapy.  What a difference time makes and what a testament to the power of prayer he is just walking in here again.  Although Phil says he never felt like he was going to die, there was ample testimony given us by his doctors regarding that very possibility that it is nothing short of a miracle that he is with us and has returned to his current state of fitness.

There are things that feel very familiar to me about this first day of chemo ~ the getting up early to be admitted, the whole intake process and paperwork, the changing of Phil's port access lines and the starting of fluids before the big guns of chemo start.  The many heads popping in the door to check in on things.  The fashionable attire.  And, just like last time, the "canoodling" in his oh-so-comfy hospital bed, napping off and on while everything was mixed up and made ready down in the pharmacy. 

What is different this time is my perspective.  The first time around I was shell shocked and reeling from the pace and seriousness our lives had suddenly taken on.  We had just left our lives behind in Washington and though my family was here, there was barely a foundation under our feet to stand on yet.  We thought we knew what to expect from chemotherapy so we hoped for the best.  We were very well informed and educated and we were prayerful.  But as you know, things went awry and the complications began and continued to pile up.  The reeling continued and didn't abate for me for about 5 months, until right around Christmas.  

And now here I am again.  It is difficult to fully put into words what I feel today because I am still coming to understand what I have been through these last months.  Suffice it to say I feel a mild sense of apprehension mixed with relief that we are moving forward again in treating the lymphoma.  This time I know exactly what to expect from chemotherapy ~ just about anything.  I feel thankfulness about Phil's recovery thus far, joyous that he has come back so strong ~ stronger in fact than when he first had chemo.   But mostly, I feel at peace.  At peace because I know that all of this is out of my control.  It is so far beyond my reach that all I can do is respond to it as it happens and not let myself get caught up in building scenarios that haven't happened yet or may never happen.  I'm taking life One Day At A Time ~ an adage from AA that holds truth for anyone in crisis certainly, but has wisdom for all of us.  

At bedtime the other night Bennett was asking me what would happen if Daddy died.  I told him we'd be OK.  I told him he'd be OK.  Then I paraphrased the bible and told him "Don't worry about tomorrow for tomorrow will take care of itself.  Today has enough trouble of it's own."  He smiled at me and said, "That's pretty good Mom, can I use that?"  I told him of course he could and that it was God, not me who was the genius behind it.  God's been the genius behind all of this whether we understand what He's up to or not.  He's brought Phil out of the valley of the shadow of death once so my money's on Him. Whatever His plan, we'll be OK.

Tuesday, January 18, 2011

So Proud!

For several months now I've been hearing about a club for kids who have a parent with cancer.  It's run locally by an incredible woman named Honor, a cancer survivor herself.  The group is called C.L.I.M.B. and stands for Children's Lives Include Moments of Bravery.  Having lived with my kids for the last 6 months, I can tell you that is the truest statement I've ever heard.  When I first told Bennett and Olivia about this club I purposefully played up the part about the pizza and all the cool kids they'd meet but it was unnecessary ~ they were on board from the start.  It took several months for enough kids to sign up and all throughout that time they surprisingly continued to ask me "when is that cancer club going to start?!"

Last night the club finally met for the first time but sadly Bennett and Olivia were the only two in attendance.  Honor and her co-leader Sara were as charming and welcoming as could be and despite the lack of other "cool kids" my kiddos walked right in and made themselves at home.  This was no big feat for Bennett but for Olivia this could have been a huge stumbling block ~ thankfully, her big brother was with her and our preparations in advance of last night's meeting served us well.  

On the way there we told the kids they could feel anything at this club and there wasn't anything they couldn't talk about.  Bennett asked if that meant he could say bad things about us and we said yes, as long as he didn't use disrespectful words.  He said he was angry at Dad for having cancer at one point, not angry at the cancer.  Hooray!  He was naming his feelings and talking about them.  Olivia chimed in about feeling mad and sad.  Oh happy day ~ this is what I personally have been striving for.  All those nights spent reading to them and having pillow talk about their days, talking about what is going on inside of them, retelling it to them so eventually they can name it for themselves and tell it to me, or someone else.  Eureka and thank you Jesus!

When we picked them up after having a great sushi dinner ourselves, they told us all about the feelings they talked about and the pizza and cookies.  All in all, C.L.I.M.B was a huge success and worth the wait.  With Phil's chemotherapy starting in 2 weeks, the timing couldn't have been more perfect ~ once again, God has shown His genius and His timing is perfect.  He has put these two women in place to love on and help support our children through Chapter Two and beyond.  

Again and with more sincerity, Thank You Jesus!

Friday, January 14, 2011

Prologue to Chapter Two

There is a rhythm of sorts settling in around here and it sounds like, dare I say it, a "routine".  I hesitate to say it out loud or to write it down because even mentioning the concept could jinx what we've got going on.  See, we've only established our "routine" this week so it is fragile and could collapse at any moment.  Is it even right to call it a "routine" after only a week, you say?  Hey people, when you've been living as tenuously as I have, you'll call doing anything that happens three days in a row a routine.  We've got school, homework, baseball, self defense, art projects, walking Nero, riding the bike with Olivia and before we know it -- it's Friday. Whew! Time flies when it's scheduled.

I thought we were in a routine before Christmas break but I was woefully mistaken.  We were in a rut.  That is a common misconception I bet.  A rut looks a lot like a routine but it is hardly the same thing.  A routine is organized and predictable, while a rut is monotonous and life-sucking.  OK, a routine can easily become life-sucking too, I'll give you that, but at least when you are organized you have some semblance of being in control of the life being sucked out of you.  Am I right?  Anyway, all sarcasm and snark aside, we are enjoying some regularity and patterning in our lives and I for one find it highly satisfying.  

Having achieved this level of satisfaction, we are now on the cusp of what I call Chapter Two, that being the next stage in chemotherapy.  This week has been all about following up with the medical minds to review the latest MRI and plan out the phase ahead.  From that aspect, things continue to look great.  Dr. Ghosh pronounced Phil's MRI to look 95% resolved meaning there is still a small amount of edema/mucor in the deep brain but the process in the frontal area on which he operated has completed resolved.  Dr. Mayer continues to express serious concerns for the mucor in the deep brain once chemotherapy resumes but understands Phil's desire to get on with it.  

Today's visit with Dr. Kossman was where the real show was.  While the other guys definitely have something to contribute to the symphony, each sitting first chair at their respective instruments, Kossman ultimately conducts this orchestra.  After examining Phil and congratulating him on a fine MRI and even teasing him about needing a haircut, we moved on to picking out a date to begin Chapter 2.  Since his 49th birthday is coming up on the 27th of this month, Phil elected to begin his chemo after sobering up from what is sure to be some mad-capped revelry (lol), on Monday the 31st.   

As before he'll be going inpatient for 4 days on the Hyper-CVAD regimen although this time it will not include the dexamethasone, the steroid which suppresses his immune function even more, spikes his blood sugars and essentially feeds the mucor infection.   He will also be receiving his IV Ambisone while on chemotherapy to continue combating the mucor.  In addition he will be given Neulasta at $2800 dollars a pop to boost his WBC count and keep his immune function working as best it can.  As an aside, Alvarado Hospital has been sold to a less than optimal buyer and we're hopeful that Phil will continue to receive his chemotherapy there - continuing with the excellent group of nurses and medical staff who provided such amazing care for him before.  On the off chance that there is an issue with Phil's admission, he will be treated by Dr. Kossman at Grossmont Hospital -- at the Cancer Center my father helped build just prior to retiring from his career as a radiation therapist. It could be worse.  Again, God in His wisdom has had a plan all along.

Chapter 1 was hard as we didn't know anything about this cancer, chemotherapy, or what the hell to expect.  It hit us like a ton of lead right between the eyes and then some.  I liken it to bringing that first baby home from the hospital; with no instruction manual but all the trepidation and sleep deprivation.  But now we're getting ready for that second baby.  We've got some skills and experience under our belts and we're a little less anxious about what's coming.  

We've got a date set. January 31st.  7 a.m. 
We've got a routine down for the kids.
We've got prayer warriors in place.
We've rested and are ready for Chapter 2.

Sunday, January 9, 2011

How's Phil?

On any given day Phil is doing really well, all things considered.  He's eating a lot, steadily gaining weight, his hair is growing back and as long as he sleeps well he's pretty energetic and good to go for the day.  If he doesn't sleep well that can mean anything for him from dragging through the day and catching a midday nap to sleeping all day long and still feeling like shit.  To add insult to injury, he just never knows how he's going to feel or what brings on the crappy feeling. Thankfully it almost never lasts more than a day or two.  To be safe, he has to make the call to his oncologist to be certain there isn't a more significant underlying cause so there is usually a bit of anxiety associated with each episode.

This question of "How's Phil?" seems to be popping up more and more frequently and has convinced me to give an accounting of what it's like to be Phil these days.  Granted, if you really must know from the horse's mouth, you'll have to inquire directly...  

In general Phil is doing his best to be a great Dad, partner and provider be it helping with homework, throwing the baseball and practicing batting with Bennett, watching Olivia as she models her fashions for us, disciplining the kiddos when necessary or reading to them at bedtime.  He's the chief dishwasher emptier around here and is often the first one to pop up after dinner to clean up.  After meeting with his boss he's even done a bit of case review work for his orthopedic group to keep his head in the game. 

We were able to travel over the New Year weekend to my sister's in Altadena to watch the Rose Bowl and Parade and have a big Mexican feast with the rest of our extended family.   Sadly, Phil woke up on New Year's Eve morning feeling and looking horrible and proceeded to spend most of the day in bed.  I too felt crappy with a migraine and limped through the day taking care of the kids and napping when I could.  Thankfully my parents arrived and provided reinforcements while my sister helped immensely.  The weekend wasn't shaping up like we'd envisioned AT ALL.  It was New Year's Eve for Pete's sake and yet by 9:30 p.m Phil and I had gone to bed.  Happy New Year and good riddance 2010!

New Year's Day was second verse, same as the first.  He still felt like crap and my head was still in a vice.  Today was the first day of 2011 and there were more family arriving and friends coming to watch football and eat a big feast.  At least we'd figured out that the heat in the house was bothering Phil and making him feel worse ~ our house gets downright cold and he just wasn't acclimated.  

So this gives you an idea of what happens to Phil from out of the blue. With the benefit of hindsight I see now how much he was dealing with.  This was our first time away from home since diagnosis and he was out of his element, out of his routine.  This pushed the envelope of comfort for him, and hence for me too.  Add to it a house full of people to relate to, lots of noise, football and well...oh, and it was raining!

Anyway, we all recovered eventually and Phil bounced back like he does with his remarkable fortitude.  The next day the rain stopped and the sun eventually came out and we all felt better.  His energy slowly gathered and my head finally stopped hurting.  We drove back down to San Diego and slowly resumed our daily life here ~ having learned that sometimes there is no place like home, even a new house that is still in the process of becoming home.  

For me, although my migraines have been hellish lately, they won't ever kill me and they eventually do go away.  I can always count on that.  They aren't living inside me and they don't have the capacity to end me, even though sometimes I doubt that.  The same can't be said for Phil and the lymphoma.  Or the mucor.  He's got two battlefronts in his war and I need/want to remember that when I get sick of my head hurting or tire of taking my headache meds or think they aren't working well enough.

I want you all to know how well he is doing just as I want you to know how equally fragile he is.  Heat affects him.  Not getting enough sleep affects him.  Overdoing it affects him.  Things we don't understand affect him and he wakes up feeling horrible for unknown reasons.  

But I also know this ~ prayer affects him.  Our Lord affects him.  Your love and support affect him.  He has been brought this far by your love and by the prayers of the people to a merciful God who listens and is touched by the cries of our hearts.  Keep it coming as we enter into another phase of treatment in the coming weeks.  Chemo is coming again soon and we will all need your love, strength, and prayers.

Celebrate what He has done!

Tuesday, January 4, 2011


I've never been one to make hard and fast New Year's resolutions and I'm definitely not one to believe that just because we've got a new calendar year on our hands that means everything is going to miraculously change for the better.  I know how the world works, or at least I know how it doesn't work.  Having said that, there are a few things I know I want to do differently in 2011.

More and better sleep: I haven't been sleeping enough and have returned to the inverted body schedule of my college days wherein I stay awake like the night owl I am until quite late then get up at O-DARK-THIRTY to get my kids off to school.  The only saving grace in this equation has been the last three weeks of sheer bliss called Winter Break.  Thankfully my children are programmed just like me so we've all been reveling in Mr. Sandman's sleep-in schedule.   Even Phil is finding sleeping (ok, napping) to be a current favorite pastime.  Prior to having cancer he'd be the first man up in the morning and the first one to bed (early to rise, early to bed) but in point of fact, on any given afternoon, either one or both of us can be found napping on the couch!  It seems that a major consequence of cancer, brain surgery, and all the attendant stress is sleeplessness and insomnia - go figure.

Exercise: We joined the YMCA and they have a Masters swim team which actually meets during the day at a reasonable time ~ not at O-DARK-THIRTY and not so late in the evening that I'll be so hopped up after exercising that my sleeplessness will worsen.  Having yet to join them I can't say what kind of quality I will find but it will be a vast improvement over the ZERO laps I have swam since leaving the OAC Masters team in WA.  My body aches all the time, I have no physical source of stress release, my shoulders clunk when I roll over to sleep and I feel lethargic 24/7.  Just do it.

Perspective and balance: Seems I try to regain this all the time.  Having been laid low and humbled by all that's been placed in my path I know that maintaining perspective and balance is just about the whole ballgame.  When I get overwhelmed it is usually because I have 1) lost my focus or have 2) become too focused on the minutia or have 3) taken on too much emotionally and psychologically.  As a mother, a woman (read "multi-tasker") and as a Lehmann (read "a compulsive") it is my natural tendency to over-think and over-analyze at times and in a situation as wrought with opportunities for processing and analysis, well, you can imagine.

So, no resolutions per se, just some good old fashioned goals and things to strive for.  I consider them prayer requests actually.   Because along with these goals I'll still be trying to shape the character of my kids, to help them understand along with me what is happening with their Dad, to tend to Phil's evolving physical, emotional and spiritual needs, to make sure homework is done, get to baseball and self defense, cook nutritious meals, keep clothes clean, model Godliness (!), have some fun and not lose my mind.  Yes, prayer requests indeed.

Sunday, January 2, 2011

Top 10 Lists ~ From the Ridiculous to the Sublime

In no particular order or significance and with no further ado...

T cell lymphocytic lymphoma
Mucor mycosis
Hyper CVAD
Tumor lysis syndrome
Post dural puncture headache
Paracranial flap
Titanium paracranial plate
Skull Base Rounds

Dr. Kossman
Dr. Ghosh
Dr. Mansfield
Dr. Mayer
3 South Oncology nurses - Abby, Fabiola, Sandy, Rochelle
Dr. Kossman's front office warriors Teresa and Sheila
Home health nurses Torie and Erin

Trenna, Terry, Josh, Rene

Brad Bruckman and Tim Spence, Jason Mayer, Kevin Krieger, Pete and Joan Lehmann, Anita Sorenson, Cherie Comparetto, David Conrad, Jeff "the love guru" Breland, David Huish, Jamie Conrad, Jim and Margaret Conrad, Alden and Morgan Sorenson, Tricia Reece and Cherylyn Smith, Peter and Michelle Lehmann and their kids Hunter, Delaney, Collin, Rachel and Garrett, Stephen and Karyn Lehmann and their kids Grace, Emma and Isabel.


Moving to San Diego after living in WA for 14 years

Driving away from the Bahn Thai parking lot in Silverdale on my last day in WA.

Sharing the CA Redwoods and Arcata with my kids in Humboldt County.

Moving into a 900 sq ft apt!

Bringing our 16 year old dog Nero back from the brink of death.

Teaching Olivia to really swim!

Getting Phil's diagnosis ~ August 10th

Starting a blog

Moving in and out in one day (from Apt. to "the big house")!

Picking up right where I left off with Trenna

Bennett accepting Christ

"Meeting" so many of Phil's old friends through this crisis.

Growing closer to my children.

Seeing Bennett become a Charger fan.

Watching Olivia learn to read and love to read.


Hearing the sound of Dr. Kossman's shoes coming down the hallway, knowing it was him.

Fabiola's haircut and personality ~ always teasing us about "getting busy" on the oncology ward.

Eating Chipotle on Phil's bed during his first day of chemotherapy.

Dr. Mayer's pointy toed shoes.

Dr. Mansfield's Zen-like manner.

Dr. Ghosh's pro bono brain surgery.

Phil shaving his head like Avatar to surprise Bennett.

Sitting in the ICU with Phil, in the wee hours of the morning, totally exhausted.

The night before Phil's brain surgery, sitting in bed with him, discussing and signing his DNR orders, praying for our family.

Bennett spending time with Phil, talking about the I.V. Pole being the "staff of life".

Too many sleepless nights.

And amidst all this has been a huge amount of cards, texts, phone calls, online comments.

What you have read above is just a small sampling of the year that has passed. I plan to leave most of these things in the past and will take only a few cherished pearls with me to 2011.

living strong for another year, one day at a time ~ goodbye 2010