Tuesday, August 31, 2010

Looking Ahead

Phil wanted to call today's blog "Calm Before The Storm" but since I'm the author, what I say goes.  Ha! I prefer to be positive and although he is the one going through this maelstrom and it is likely to get stormy again soon enough, let's be optimistic, shall we?  

At his most recent f/u visit with Kossman this week, his labs looked awesome and as I mentioned in my last post he is seriously on the mend.  His WBC count is above the normal range now and although his HCT is low at 26 he is feeling fairly energetic (for him) and was given a go for the next round of chemo to begin on schedule next Tuesday, September 7th.  This will be part B of the first cycle believe it or not.  With everything I've been posting about the drama we've been through it's hard to think we aren't even through the first cycle!! Holy guacamole.  But, as my girlfriend quoted to me from Finding Nemo, "just keep swimming, just keep swimming."  And so we swim along.

Brief Intermission   HEMATOLOGY 101
     I thought I'd take a minute to explain some basic hematology to all you non-medical folks out there since I tend to throw around a fair amount of terms that need explanation and I tire of putting things in parentheses.  You, no doubt don't want to Google everything and probably don't have a medical dictionary at your disposal...

CBC: complete blood panel  A test draw to analyze the formed (cellular) values of blood.  Includes WBCs, RBCs, HGBs, HCT, PLTs and others.

WBCs: white blood cells   The number of white blood cells (leukocytes) in a volume of blood.  Usually differentiated into types of white cells.                             
4K to 11K is the normal range for men

RBCs: red blood cells The number of red blood cells (erythrocytes) in a volume of blood.
4.35K to 5.25K is normal for men

Hgb: Hemoglobin  The protein molecule within RBCs that carries oxygen and gives blood its red color.
11 to 17g/dL is the normal range for men

HCT: Hematocrit  The ratio of the volume of red cells to the volume of whole blood.
35% to 55% is normal for men

PLT Platelets  The number of platelets (thrombocytes) in a volume of blood / responsible for clotting the blood.
150,000-455,000 is normal for men

These are just the basics and if that was a snooze fest, a thousand apologies.  For those of you who can't get enough I hope you are already in the medical field.  Otherwise check out your local library or maybe you should be Googling it.  Either way, feel free to refer back to these normal values whenever I spout off about Phil's current results because he will be dipping in and out of normal.  For instance, at the beginning of this past week his WBCs were at 0.  Nothing, Nada, Zilch.  But after the Neulastin (the blood booster) he is at 19.5K WAY above normal.  Yee-Haw.  Better living through pharmaceuticals.

So, there you have it.  All our hard earned money and insurance going toward multi-million dollar drugs that keep Phil upright and making little-itty-bitty cells that fight off infection, carry oxygen, and keep him able to kick ass and take names.  And that's just what he's aiming to do come September 7th.  Mark your calendars!!

Sunday, August 29, 2010

On the Rebound

At some point in the early hours of Saturday morning when he rolled over in his semi-conscious state of sleep, Phil had an amazing experience.  He realized he'd done it without pain and without having thought about it.  For most people this would hardly even make the list of memorable experiences but Phil's definition of memorable experiences is clearly much different than most people's these days.  For him to roll over without planning it out and taking a deep breath to prep himself IS a big deal.    Thank you Neulastin, thank you WBC's (white blood cells).  Never, and I mean never, underestimate the enormous role your immune system plays in how well you feel day to day.

Twenty pounds lighter, ghostly pale and having a white count that had bottomed out Phil was merely a shadow of himself when I tucked him in Friday night.  Dr. Kossman told us Friday that when the WBC's start coming back we'd be amazed at how quickly he'd bounce back.  Fo-shizzle! 

Friday he ate, let's see...almost nothing.  He did, let's see...nothing but sleep and try to conserve enough energy to make it to the car under his own power to get to the appointment.  But Saturday now that's a horse of a different color.  That whole rolling over without thinking about it was just the tip of the iceberg.  For the first time in a long time I got to sleep in and when I eventually pried myself out of bed, the kids had been fed and Phil was, wait for it, hangin' out with them! Praise God from Whom All Blessings Flow!

Saturday he ate, let's see...bacon for breakfast, and from there it just kept going.  Every few hours he had his head in the refrigerator to see what else we had in there and his appetite was back in earnest.  As for activity, he was up for most of the day and had his first meal at the table as our two whole families sat down for dinner for the first time since moving in.  Today, Sunday, was even better than yesterday and we've had time and energy to talk about what we've just gone through, what we've learned so far and to plan for the next cycle.  

We know that days 8-11 are the worst but that the sun rises again on days 12-14 or so.  We know the chemo packs a punch but it can't poison the spirit.  And we know we have a community of friends and family with us every step of the way on this journey that makes us cry, question, struggle and sometimes even laugh.  Today Phil ate like a horse to strengthen himself for the next round, today he helped around the house, today his body made more and more WBCs to combat infection and today I got to be with all 3 of my sisters.  Today was a great day.

Friday, August 27, 2010

Be Here Now

 "BE HERE NOW"  Baba Ram Dass

Like most people I start each day with plans and a To Do list but more often than not they quickly change.  Take this morning for instance.  I was all set to take the kids to school and spend an hour with Olivia in her classroom, seeing as she'd had a tearful time yesterday going to school.  From there I would head to our apartment and finish up the last cleaning and turn in the keys then sweep out our storage unit and close out that account as well.  Having the kids in school and Phil resting back at home would allow me to get so much done!!

Little did I know what today had in store for us.  Phil woke up with a low grade temp and as this was Day 10 of his chemo course, he was at an all time low and going from bed to the sink to brush his teeth and back was all he had energy for.  Immediately after brushing it was back to bed for a 30 minute nap.  He was like a limp piece of spaghetti and feared he might need a transfusion.  Thankfully he didn't but the office visit did confirm he needed a liter of IV fluids, some Neulasta (a white blood cell booster) and some antibiotic prophylaxis.  We also learned he'd lost 20 lbs in the last 2 weeks.  Crickey.

Being a medical professional, I have the fortune/misfortune of seeing the whole picture here as regards Phil.  I understand his diagnosis, his therapy, his prognosis.  I take copious notes at his visits which resemble my short-hand chart notes of old.  There are nursing notes in my journal and I can be a top-notch patient advocate and know the right questions to ask.  But today, while that was helpful, none of it changed the fact that Phil felt like shit.  None of it changed the fact that our entire day would (appropriately) be spent making him feel better.

Not that long ago I might have been frustrated or even pissed off that my schedule and agenda had been knocked out of alignment.  In his mercy, God has poured out patience upon on me in quantities I've not known before.  Now I live moment by moment and just keep letting things go.  That's not to say I'm perfect, far from it.  I still snap at my kids and dog, cry when anyone does something unexpectedly for us, have trouble sleeping soundly and am eating Tums to quell my acidic stomach.  It is a work in progress. 

The blog is cathartic yet no matter how many people I have around me picking up the slack there is no amount of filler to solidify the quicksand that we are navigating.  But there isn't a Plan B so on I go.  Phil doesn't have any other choice either so I take my breaks when they come, nap when I can and try to prioritize what's most important.  In point of fact, I rarely wear make-up, have a rotating wardrobe of 3 or 4 favorite outfits and can't remember the last time I styled my hair.  Frankly, my dear, I don't give a damn.   

Some days despite all my plans and To Do lists, all I can manage is to BE HERE NOW.

Thursday, August 26, 2010

This Is Spinal Tap

How many times can one lose all sense of time before one loses ALL sense of time?  

It's been four long days since my last post and I've received several anxious emails from friends and family wondering if everything was alright.  It's touching to know that what I write for personal catharsis has had an impact on folks.  How difficult it must be to have to assume that "no news is good news",to wait for the next installment to appear, not knowing when that will be or what news it will contain.   Well, the news is finally good but the hills and valleys we've traversed have precluded me from writing a blessed word until now.

The point of this hospitalization was to sort out the incapacitating headache Phil was enduring.  For you fellow migraineurs out there, I'm told what he was going through pales in comparison to our troubles.  And I have suffered through some seriously bad 3 day juju, let me tell you what.  This deal Phil had needed time to declare itself clearly and was finally given a name -- "spinal headache" or post dural puncture headache (PDPH).  Although it is rare for a headache to occur so many days after the spinal tap (5 days) there is nothing like a spinal headache - it feels like the worst headache you've ever had complete with nausea and vomiting when you are sitting up and it quickly resolves when you lie down.  

WARNING:  we're gonna get a little graphic here.  During a lumbar puncture (aka: spinal tap, intrathecal chemo) a large spinal needle is inserted between two vertebrae and pushed in until there is a "give" that indicates the needle is past the dura mater, the outermost and toughest layer covering the spinal cord. The needle is again pushed until there is a second 'give' that indicates the needle is now past the arachnoid mater, the delicate fibrous middle membrane covering the spinal cord.  The stylet from the spinal needle is then withdrawn and drops of cerebrospinal fluid (CSF) are collected from within this subarachnoid space.  Phil then has to lie on his back for six hours to prevent the "spinal headache" and any leakage of CSF.  

In a normal situation this would go smoothly and all would be well.  For Phil, the first several days did go well and he felt good which we marveled at considering the cocktail of chemotherapy he was taking.  While he was preparing to leave the hospital from his first round of chemo he was just starting to feel a mild head and neck ache settle in but by the time he'd been gone for 30 minutes it hit him like a ton of bricks.  Although it would take several days to ferret it out, Phil was leaking CSF and having classic symptoms of spinal headache.  But the challenge with a patient on chemo is determining what to attribute these symptoms to.  Dehydration?  Side effects?  Fatigue?  All of the above?  Phil said it well about the ER docs.  They have an unknown patient land in their lap in major distress and they have to deal with it.  Like trying to find their way through a maze -- all comers.  Respect those Doctors.

Thankfully, after lots of rest, fluids, pain and anti-nausea meds and good old common sense it became clear what was going on.  With spinal headache, the treatment is straight-forward.  With what's called an epidural blood patch a small amount of Phil's blood was injected into the epidural space near the site of the original puncture and the resulting blood clot then "patches" the leak.  It is amazing how quickly my man went from a babbling zombie to a happy humorous virtually pain free man in the span of about 2-3 hours.  In another day or 2 he progressed back onto a solid diet and was able to come home last night.

When we drove up to the big house we heard the sound of laughing and kids playing in the pool.  Thinking he'd want to lie down, I headed for the bedroom but he was happy just to sit in the night air and watch them cavorting around.  But, of course.  What must it be like to have the rug pulled out from under you?  First with the diagnosis, again with the chemo and then again with the side effects and spinal headache.    Phil missed out on the kids first day of school, suffered a major set back in his recovery, came home neutropenic (very low white cell count) and immunocompromised and has a hematocrit of about 30 which translates into profound fatigue.  

I've noticed some definite changes in Phil.   He has a chronic little cough from the meds and he naps 4-5 times a day.  His appetite has gone down and he's losing some weight.  He's not as fit as he used to be and just being on his feet for long periods of time make him tired.  This is Phil we're talking about -- it's crazy but true.  But I've noticed some other things as well.  He's never once thrown a pity party.  He's never said "why me?", never renounced God and never considered quitting the chemo.  He's definitely not lost his sense of humor either.

He's home now where he belongs and he's ready for more.  There's plenty of fight left in the ol' boy yet.

Monday, August 23, 2010

Jesus Christ On A Crutch


Phil's dad says this when he is royally pissed off and G-damned frustrated and for any of you who know Jim, can't you just hear his cantankerous voice in your head?  Although I don't know the origin of this particular jargon I was completely in touch with its general sentiment  over this last 36 hours.  What should have been a victory dance to celebrate the end of the first 4 days of chemo completely fell apart on us within minutes of driving away from the hospital.  

Phil came home Saturday about 3 p.m., later than we had anticipated because it took so long for his last bag of chemo to run through.  While we waited for those last drops to make their way through the IV lines, he talked about getting out into the world again, going with me to the pharmacy to pick up his prescriptions, and grabbing some frozen yogurt at The Yogurt Mill in El Cajon, our new favorite spot to indulge.  After a bit of debate with the ol' ball and chain about what is appropriate behavior for a chemo patient upon discharge from the hospital we set off for our errands.  Basically, nothing was going to keep this man from his strawberry frozen confection.

Well, the best laid plans of mice and men...  No sooner had we reached the pharmacy parking lot then Phil looked at me and said "I'm not going in."  He looked pale, puny, and he'd crumped (medical-ese for given out).  He'd been having some neck pain over the last few hours but now it was getting worse and he just wanted to go straight home.  I dropped off his scripts and we got him home and right in bed.

Over the next 4-5 hours when he should have been taking fluids and enjoying mild home cooked food he was barely able to take ice chips and only when they were placed in his mouth.  He had zero appetite and was nauseated.  The medication for the nausea was barely keeping it at bay and any movement was just making everything worse.  It wasn't until late in the day that he would accept apple juice and then only a few sips.  Thankfully his blood sugars did well throughout all this. 

While in the hospital he was given HUGE amounts of IV fluids to prevent tumor lysis syndrome by flushing out all the killed cancer cells.  Both to rid his body of all the nasty dead cancer cells but also to prevent his kidneys from having problems and his body from developing gouty deposits.  Bottom line -- this guy needed to be pushing fluids and he wasn't.  Oh and did I mention it was 95 degrees outside?  By about 7 o'clock the nausea he'd been struggling with got the best of him and the vomiting began in earnest. 

So, after a very long afternoon of encouraging oral hydration and several calls to the oncology service the decision was made to take him to the ED (emergency department) for evaluation, IV fluids, etc.  Once there he was indeed given lots of fluids, had plenty of blood drawn (which was all essentially normal except to show he was dry) and he was given new meds to try for the nausea and vomiting.  The first med (Zofran) helped a bit but not enough so he was given Phenergan.  From there it all went to hell in a hand basket.

Phil is such a lucky guy that he got to develop what's called an extrapyramidal or dystonic reaction to the phenergan on top of the other world of hurt he was already in.  In dystonic reactions muscles contract causing twisting and repetitive movements.  The movements are involuntary and may affect a single muscle group or a group of muscles.  In Phil's case, his legs were basically twitching and flopping all over and he just couldn't get any rest.  

Guess what the treatment for dystonic reactions is?  More medications!! First Benadryl which didn't help then Ativan which didn't help either.  By then Dr. Kossman had called and we'd decided to admit him for further fluids and management.  The good doctor would be rounding on him at o'dark-thirty the next morning and hopefully all would be resolved.  By now I thought it was o'dark-thirty but silly me it was only 1 a.m.!  So up to floor we went, 3 South, our new home away from home.

Once Phil was safely tucked in for the night but still kicking away to beat the band, I had to beg off.  Tomorrow (today actually) was our kids first day of school and I HAD to be functioning for that.  Phil and I had a brief conference regarding my need to get some sleep and he assured me in his drugged and fuzzy voice that he'd "give 'em hell" if they didn't treat him right.  That was a very lonely walk down to the car but I knew I had to go.  The kids.   First day of school.  Must sleep.  Take care of myself.  Breathe in.  Breathe out.

Jump to today (Monday).  Dr. Kossman called me as I was finishing dropping my kids to their classes.  He told me his grandkids go to our elementary school too and it is #5 for test scores in the state -- how perfect.  His wife is there dropping them off and he'll introduce us sometime.  What a rare and wonderful individual in addition to being a top notch oncologist and physician.   Anyway, Phil's labs are normal today, he's taking fluids by mouth and he looks better.  He knows this is a challenging phase but that's normal for this stage of the process; a steep learning curve for everyone.  There are still a lot of issues for us to iron out but we've learned a ton about what NOT to do again.  No shit sherlock.

Phil still has nausea and significant neck pain and headache and will be having an MRI tomorrow to sort that out.  He is staying another night in the hospital when he would rather be with his family.  But Dr. Kossman was very matter of fact and told us what was going right.  The war continues on and Phil is doing alright.  His labs are good, his blood counts look good and he tolerated the chemo well in the hospital.  His neck nodes are smaller which means the chemo is working.  YES, this first battle is a bitch (my wording) but the bigger picture is encouraging.  No rest for the weary.

Friday, August 20, 2010

Strategic Interests

As I was driving over to the hospital tonight to spend Phil's last evening in captivity with him, I heard something on the BBC that really struck me.  But I'll get to that in a minute.  First, let me set the stage a bit.

It is difficult to believe that it's only been 10 days since our lives became what a relative so eloquently described as an "avalanche of adversity".  Well, there wasn't any adversity today, just a lot TO DO.  And do, we did.  Aided by my sister Terry, our friend Anita, my nephew Josh, and my new housemates, Trenna and her husband Rene we moved from our apartment to the big house. These people are not just names mind you, they are saints and angels, earning crowns for themselves in heaven.  Seeing what needs to be done and doing it.  

So, back to what I heard on the BBC.  I tuned in just as a man was talking about the floods in Pakistan.  He said the people there were "aliens of no strategic interest to anyone."  How sad and opposite from our situation!

If you could have seen the way our apartment was literally cleaned out from underneath me this morning I'll tell you what.  It was awesome!!  Leaf cutter ants got nothing on these folks.  What's more, most of these same people will be showing up tomorrow to move all of our crap out of our storage unit too.  Not to mention the fact that Josh already hauled it all the way down here from WA and unloaded it into the storage unit, just he and Phil...LOVE YOU JOSH YOU HUNK-A-HUNK-A-BURNING-LOVE  

As if that wasn't enough, Trenna and Rene took our kids to Coronado with them so I could spend time with Phil tonight, Terry and Josh have fed us almost every day this week and been uber-aunt and cousin, and two great friends of ours Kevin and Jason are making plans to road trip a motorcycle down here from WA for Phil to ride when he feels up to it.  Fo-shizzle!!   The hits keep coming and coming... : ) 

We are fortunate to be known by you and to be called sister, brother, son, daughter, cousin, aunt, uncle, niece, nephew and friend.  I know I said it yesterday and I know it will be said many times again but we are so blessed.  Although it completely sucks, we've been given an opportunity few get to learn in the very hardest way our "strategic interest" to each other.

Thursday, August 19, 2010

Thank You Team Conrad

Today I think I might finally be feeling the fatigue.  In my folly I saved writing this post until late and my brain is competing with the XBOX in the background for my attention to detail.  Truth be told, I also just polished off a big dish of frozen yogurt with chocolate chips and am primed for a food coma to set in.  Reader beware, just saying.   

Seriously,  any thoughts I had of skipping out of posting tonight were quickly extinguished when I saw how many new followers the blog has received since yesterday.  The outpouring of emails, comments and FB posts has been more than amazing and there really aren't words for how loved and supported we feel.  THAT is where my energy comes from tonight.  From you, Team Conrad.

Many of you have written how much the blog has helped you.  What started for me as a simple journal and a way to keep friends and family informed has become a source of tremendous energy and support for me as well.   I love to write knowing that it is giving you information, hope,and inspiration and I feel renewed and connected to our team when I am finished.  So, thanks for being there and for inspiring me.

As for todays news:  The initial spinal tap was read as...NEGATIVE! Praise Jesus. We will hear the final results tomorrow but we are very excited.  If the spinal tap is negative then Phil will only need the intrathecal chemo 3-4 more times and he will NOT need a reservoir (plug!) in his head.  Hallelujah!! Finally some good news after a landslide of crap-o-la!  Stay tuned for the final results.

Tomorrow brings the last 2 chemo agents for this cycle, vincristine and adriamycin.  They are unknowns to us and we will learn what side effects they have to offer over the next 24 hours.  We'll see how they work and hope for the best.  After that, he's coming home to rest at "the big house" (subject of a future post) on Saturday.

Take heart Team Conrad,  Phil's been kicking butt and taking names and is buoyed by your love love love.

Wednesday, August 18, 2010

Standing Shoulder to Shoulder

Considering the post I wrote yesterday and the whole "kick-ass" thing we were expecting more from our first day of chemotherapy. To use one of my favorite quasi-medical words, we were both underwhelmed. The terrible tales we've probably all heard about endless nausea and vomiting haven't happened to Phil at all (and likely won't thanks to advances in medicine).

As for side effects, he had a bit of stomach rumbling early on which was easily fixed with some Protonix. The worst he had to deal with yesterday was a sky-rocketing blood sugar of over 500 due to the Decadron (a powerful steroid which completely messes with diabetic control). For those of you who know Phil and his diabetes that did not sit well. While he was prepared for this eventuality by Dr. Kossman, Phil has long taken pride in having excellent management of his diabetes. This is just one more area where he will have to let go of control (or the sense of control).

As we prepared for this chemo regimen we told ourselves that Phil will get worse before he gets better. No doubt, we haven't seen the worst of it as all the meds have yet to been given for this cycle. Today is the spinal tap and the intrathecal meds (given directly into the spinal fluid) followed by 4-5 hours of lying flat on his bed. Yee-haw!! Hopefully we'll know the results of this test before he leaves the hospital. We'll round out the week with the Adriamycin (the red devil) because it is red, makes you pee red and makes your hair fall out. Can't even wait for that one. As you can see, Phil has already trimmed his hair in preparation for that.

Overalll, yesterday went well and the only other issue was what to do with all the spare time. Boredom set in kinda early and there were only so many naps we could sneak in between vital sign checks, oncology education nurses stopping by, medication pump alarms going off, and so on. Reading is nice and so is TV but nothing beats the comfort of family, friends and conversation. My sister Terry came by in the afternoon to snap a few photos for the blog and share a few good laughs which always helps.

SO, on that note. Many of you have been writing and asking about coming to visit and the answer is YES YES YES. Having said that, I have some specific wishes for Phil during this time:

Each time Phil is in the hospital he is mostly sitting around for 4 days. I would love for him to have someone with him during each of these cycles keeping him company, smoking and joking, reliving the old days, sharing in this journey with him, praying with him, whatever you men do together...

There are plenty of opportunities and while we don't have a schedule set in stone yet it will be an every 3 week rotation from here on out until he is in remission. If you are interested in joining the phalanx and standing shoulder to shoulder with Phil in the battle please contact me by email @ socalconrads@gmail.com and let me know when you want to come and LET'S MAKE IT HAPPEN!

Tuesday, August 17, 2010

Phil with our version of Mother Teresa

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So begins a love/hate relationship...

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Day One: Chipotle On Board

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Elvis Has Left the Building, and He's Packing

It's called Hyper-CVAD and it is bad-ass.

For the next 6-8 months it's also our new best friend and ally in this war on cancer. Hyper-CVAD is the name of Phil's chemotherapy regimen and it is literally an all-out assault on the lymphoma that has taken over his body. If you've been following my posts then you know what we're up against here. You know that we want the most powerful, state-of-the-art, nasty, down-n-dirty, pull-out-all-the-stops treatment there is. Well, folks, this is it. Hyper-CVAD. Sounds like a nuclear weapon and isn't that what you want to hear at a time like this? The big guns.

Brief intermission:
I am at the hospital and the nurse is getting things going. She just brought in a "chemo spill kit" in which she will put all the spent IV tubing, bags, etc. It is also here in case she spills something on accident. It is basically a hazardous waste kit and has all the typical markings on it you would see at a nuclear facility. She also informs us that she will be donning a special "gown" every time she infuses Phil with his chemo in case she get's any on herself. Yeah, THOSE are the drugs we want. Hyper-CVAD baby.

Basically it will go something like this. Every 3 weeks, Phil will go into the hospital for the first part of a two part regimen consisting of 4 days of IV chemotherapy with a combination of multiple powerful medications. Those medications are:

C= Cytoxin (cyclophosphamide) which alters DNA
V= Vincristine (Oncovin) which blocks cell duplication
A = Doxorubicin (Adriamycin) an antitumor antibiotic
D= Dexamethasone an anti-inflammatory steroidal, immunosuppressant

Like I said, this is just the first part. After another 3 weeks he will be admitted to the hospital again for another 3-4 days during which he will be giving high doses of methotrexate and Ara-C (cytarabine) which will complete the cycle.

As if all that weren't enough, tomorrow he will have a spinal tap to diagnose whether he has CNS (central nervous system) involvement. At that time he will be given a dose of prophylactic chemotherapy into his spinal fluid. If his test is negative he will get several more prophylactic treatments in his CSF (cerebrospinal fluid). If it comes back positive he will be treated very rigorously and will need to have a small reservoir put into his scalp to feed the medications into his ventricles directly/weekly for the rest of his treatment regimen.

If you, like us are feeling blown away by all this, join the club. The line forms to the rear. It is a lot to take in at one time. But believe you me, you WILL absorb it somehow even if just enough to move on to the next blog entry. We are still in the process of absorbing these truths for ourselves and for our children and certainly haven't yet fully felt them. But now that I am sitting here watching our cheerful and wonderfully skilled nurse Abby gown up and begin to administer these meds to my dear husband, I know there will be time for that in the days to come. Right now, it is definitely GO time.

Strange as it is to say, even though we just got word of this diagnosis 7 days ago and have barely had time to digest it, we have really been looking forward to this day. Today means we get to DO something. Today means we get to strike back. Today means we get to have a say in what happens from here on out. Passivity ends here.

Romans 8:28, 31
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

What, then, shall we say in response to this? If God is for us, who can be against us?

Sunday, August 15, 2010

Looney Tunes

Having grown up watching Bug Bunny and Looney Tunes, my head is full of cartoon images and thankfully, classical music. As I drift in and out of sleep in the wee hours of the night one image plays in my head more than any other. In my dreams, whether it be a train or a car racing by there trees and scenery, their colors blurring and their shapes bending in unnatural proportion to the forces rushing past them. And there is always that rubbery instrumental music I've only heard in cartoons as the trees bend just to their breaking point (although there is a suggestion in the music that perhaps they will go just beyond before they snap back). I can't think of a better word to describe it, sorry. Does anyone actually know how you make that sound? A huge saw? For the life of me I can't think of it. At any rate, that is the sound track of our lives right now. And those trees bending as the train rushes by? I get that.

Saturday, August 14, 2010

Hello Mr. Anderson

If the title of this blog eludes you, then you'll have to take it up with Phil. His sense of humor these days seems to revolve around many of his favorite movies. It has been good to hear him joking around again after so many days of both of us being Debbie Downers (sorry all you Debbie's out there!) For instance, in the midst of recounting the whirlwind of bad news he can often be heard quoting Bill Paxton from the original Aliens movie "this can't be happening man!"

Yesterday he had a port put into his chest to deliver his chemotherapy. Basically, the port is a catheter that is surgically implanted under the skin then tucked up under the rib and inserted into the superior vena cava so the medication can go directly into his circulation. When I dropped him off to the surgery center he said he was going to be "Matrix-ized". He will wear the port throughout his entire chemo regimen and let me tell ya - if it could teach Phil that cool martial arts stuff he'd do it!!

Prior to his surgery he had to be NPO which means nothing by mouth after 6 a.m. His procedure wasn't until 2:30 (and didn't actually happen until 3:15) and for a guy, let alone a diabetic, that is a long time to go without! When I joined him in the recovery room around 5:30 he was asking the nurses for margaritas and chips and asking when he could go dancing!! Classic Phil.

The recovery room nurses told me he'd charmed the surgical staff and he'd even had time to counsel a young volunteer on her career path. Even though the surgeon was running behind, his counseling session and the smoking and joking he was doing in pre-op made him so popular they didn't want to let him go. The feisty Latina nurse and he were flirting over the sexy tight white compression hose he gets to wear every time he has surgery too. So all things considered he could be doing much worse.

This is serious business, no doubt. But I don't want to paint a picture of utter despair and hopelessness here. Any of you who've seen Phil do a commando roll know he's got some surprise moves on him and the man has fought through some serious shit and won. This is Team Conrad we're talking about after all and the sun does rise again. We just needed a minute to catch our breath.

Friday, August 13, 2010

The New Normal

Both times we've seen Dr. Kossman so far we've been blown away by the information he's had to share with us. Or in our vernacular, blitzed. Blitzed by the news, by the gravity of the situation, by the pace at which life has begun to move, by this whole ball of wax. It was against this backdrop that we went to our third visit yesterday to hear the results of the CT scan and the bone marrow biopsy and make a plan for our next steps. Well, Dr. Kossman did not disappoint.

First of all, the bone marrow specimen he took from Phil's pelvis was almost completely replaced with lymphoma which is obviously not a good thing. Secondly, Phil has a lot of lymph node involvement in his chest and neck. Especially in his chest. While this is very typical in this disease, when you hear the size and see the doctor making the shape with his hands it is quite harrowing.

We also learned that Phil's course of chemotherapy is really just the first step in his treatment and is not truly the cure. The goal is to get him into remission as soon as possible with the chemotherapy ( which could take 6-8 cycles) and then he will need to have a bone marrow transplant. The vast majority of patients with this lymphoma who achieve remission do not stay in remission. Therefore, the bone marrow transplant is the cure. In a nutshell that boils down to 6-8 months of chemotherapy followed by a bone marrow transplant.

So, today begins with a procedure to have a port surgically placed in Phil's chest through which he will receive all the chemo. Then he'll be admitted first thing Tuesday morning to begin 4 days of the first round of his regimen.

Whew! Phil and I walked out of the office in a complete daze. The list of side effects had been run through , prescriptions had been written, disability had been discussed, a few tears had been shed, even a few jokes made. At one point we had a brief moment to ourselves while the doctor stepped out to take a call and we shared a hug and a sloppy prayer.

We are through the looking glass and there is no going back! And while we are missing friends and family back in Washington, we are absolutely certain that we are in the right place. The care we are receiving from Dr. Kossman is par excellence and he is a consummate diagnostician, physician and gentleman. Being with family at such a time as this can't be undervalued and the weather...well, there's no rain in the forecast anytime soon.

At the end of a long appointment we walked hand in hand to the elevator and rode down to our car in silence. Having no idea of what we were doing next other than heading to the pharmacy, we stepped out into bright sunshine and 75 degrees with blue skies all around and put on our sunglasses.

Thursday, August 12, 2010

As Surreal As it Gets

August 10th, 2010. Phil says to me, "Well, I'll remember this day forever."

Many of you may remember that Phil has been dealing with some intense pain symptoms since Easter that have eluded any firm diagnosis. He has seen a neurologist, 2 rheumatologist's, an endocrinologist and a family physician. Several weeks ago he began to develop even more concerning and serious symptoms which sent him to an oncologist and five days ago he had two large lymph nodes removed from his around his left clavicular area. While he was in the recovery room I was told by his surgeon that "it is definitely lymphoma" that we were dealing with.

We are now sitting in the car at an intersection, waiting for the light to change, both of us staring off into space. We've just come from our oncologist's office after hearing the full extent of the lymph node biopsy results. It is definitely lymphoma, it is a rare form and it is aggressive. That helps explain the systemic smptoms he has been experiencing -- weight loss, night sweats, profound fatigue and even more intense pain.

Phil has T cell Lymphoblastic Lymphoma. It accounts for about 2% of Non-Hodgkins Lymphoma diagnosed per year. So now that we knew what type it was the next step was to figure out what stage the disease was in. At that oncology appointment with Dr. Kossman (an amazing God-given blessing to us) Phil chose to have a bone marrow biopsy to begin the staging process. It was moderately painful but he was so ready to get the answers we need to begin treating this thing. He has been suffering for so long! As he says, "it has been kicking my ass for so long, I'm ready to kick it's ass back!"

The next morning, yesterday, he had a neck, chest and pelvis CT scan to see how many lymph nodes are involved and where they are. Determining this is also part of staging the disease and guides the chemotherapy. It involves how many are above and below the diaphragm and whether or not his thymus gland is involved which will mean he also will need radiation therapy. Later on, probably next week, he will need an inpatient spinal tap to finish his staging. About 10% of the time there is CNS (central nervous system) involvement. He will be prophylactically treated with chemotherapy at the time of diagnostic testing as well.

We have very briefly discussed the chemotherapy regimen ahead of us and it is either an every week or every 3 week regimen for 6 months. He will need to be in the hospital for 3-4 days for each cycle and there is a combination of 4-8 drugs involved. Needless to say it is incredibly daunting, he will be out of work and very sick.

We follow up with Dr. Kossman later today for the results of the staging studies and the next chapter in this horrible drama.

We are just beginning to grasp all this and time is doing that thing where it moves along without you while decisions are made rapidly and everything you thought mattered just falls away. We are feeling the love and prayers of all our friends and family pouring in and somehow are still able to eek out 4-5 hours of sleep. God is providing mercies and covering the details every time we turn around. Why this has been visited upon us we don't understand but we do know that He is good, all the time.