Tuesday, November 30, 2010

Cancer Scars

At our Thanksgiving dinner my dad gave the blessing and as he tends to do on these occasions, got all verklempt as he spoke about a warrior and his scars who stood with us that night. He was talking about Phil of course.  

My dad is a Lutheran preachers son through and through and waxes eloquent quiet regularly and on many a topic.  He earned the nickname Plato from his children and having grown up in his home I can attest that it was not always a term of endearment.  I can only speak for myself, but there were times when I would have opted for a spanking rather than a long drawn out lecture from him, my logic dictating that a spanking would hurt much less and be over more quickly.  Pete, as he is known to his friends, or Quentin as his mother named him, is a retired physician in radiation therapy and knows what he speaks of when he calls Phil a warrior.  

In his little preamble to the dinner prayer he talked of the elephant in the room - referring I suppose to the guests with their curiosities about the skinny guy with the huge scar across his forehead.  He explained about the cancer and the fungal infection and he talked of Phil's eye that had gone silent.  He championed Phil's strength and fight that he's exhibited all along the way.  And then my dad talked about me.

I had on this beautiful new outfit and I'd done my hair and make up.  I was looking really nice and put together for a change.  But my dad knows better.  He had my number like loving good Dad's do.   He said, "Sally looks great tonight but she's got scars too."  Wow, right between the eyes.  He didn't really say much else, he didn't have to.  That was enough to convey the truth about our situation.  Cancer is taking a toll on me, our family, our life.  We all have scars, Bennett and Olivia included.  Some are visible to the eye and some are harder to see.  

And here's the truth of it that I don't write about very often.  Our cancer experience has been a particularly difficult and devastating experience because of how aggressive it came on, how intensely it has to be fought against and how complicated it has been to battle.  Our dream to move to California and begin a new life here was radically altered almost the moment we got here.  All the promises we made to our children have had to be postponed or altered in some way.  There have been losses upon losses and changes upon changes.  Little for them has been very secure for some time now.  They essentially left everything they knew in Washington to arrive here to the uncertainty of their father's cancer.  And they have more or less been relying on the certainty of their mother.   Just yesterday Olivia asked me why she doesn't have a special friend just for her like she did in Washington.  How do I answer that?  It's partly because all my energies are spent battling and just getting through.  It's because I don't have much time for any real women friends here that would allow her to have friendships with their daughters like we did in Washington.  And Bennett was just beginning to shift that maternal bond over to Phil when he got sick.  What horrible timing for a young boy of 9.  Cancer is a cruel and consuming disease that is robbing all of us of life.   

There are still many reasons to rejoice and I do find gratitude in every day.  We had a wonderful Thanksgiving dinner and Dad's prayer was as touching as it was tearful.  But I am tired and I know this hiatus in Phil's treatment is only contributing to the sense of fatigue and awareness of how long this journey will be.  I know that my redeemer lives and yet I am human and I am unsatisfied with this stage of my life.  I want more for my children. I want to know my kids are going to be OK and to know how this is going to turn out for them.  I'm finding waiting on the Lord very hard to do.  But what else is there?

Thursday, November 25, 2010


The Conrad's will be spending Thanksgiving day in sunny California with 29 friends and family at their home in the hills of beautiful El Cajon. We'll be enjoying more food than we can possible eat, more laughs than we've had in a long while and great company.

My sister Terry (of Mother Teresa fame from previous posts) usually hosts this shindig at her house down the street but seeing as how she only has about 1500 sq. feet to our 3400, well, you can do the spatial computations and figure it out. Having been in the Northwest for the last 14 years I've only heard about these Thanksgiving throw downs so I'm pretty pumped to be participating in one myself. This year I got off relatively easy for a well-known or at least self-professed good cook. Pecan Pie and Glazed Pearl Onions were all I have on my to do list, besides of course, having a clean house and supplying a few serving dishes et al. Easy peasy!!

What cracks me up is how intently my sister takes this whole turkey dinner considering she's a "vegetarian" and turkey and/or stuffing haven't passed her lips since Methuselah was a baby- and we all know Methuselah farts dust. Just goes to show you what being a real chef is all about. Kudos once again to you Mother Teresa. My sister reads this blog so that should show you something about the nature of my relationship with her, that I can put this kind of thing about her on the web for perpetuity and not make her mad. She really is a saint and I am so thankful to have her just down the street!

At any rate, it's now time for me to get those onions cooking and get showered before the guests arrive. Just wanted to give you a little perspective on how normal our day will be today. Full bellies, full hearts, probably some football too. Phil is doing great and we'll be thanking an Almighty God for that.

As I said on my Facebook post earlier today, I am thankful to have been given the opportunity to say THANK YOU over the past few months more times than I have in the last few years combined. Being humbled and laid low is truly the most high place. May you be equally transformed in your thanks giving.

Monday, November 22, 2010

Holy $@#& Batman!!

"Holy Shit" aren't exactly the words you want to hear your oncologist utter to you in reference to your recent MRI. However, at Phil's follow up visit to review his MRI with Dr. Kossman this week those were precisely the words we heard. In point of fact, Dr. Kossman was actually quoting the neuroradiologist who had read the images and was reporting to us their combined surprise at finding Phil's MRI so dramatically improved.

The edema and swelling is significantly resolved as is the left to right shift of the brain. In terms of the hematoma and residual activity in the left frontal lobe, it is about 50% improved and most significantly, the basal ganglia (deep brain area) is about 30% improved from the previous scan. I think it is fair and accurate to say that we go into these appointments now with no expectations, not knowing what we're going to hear. Well, this was definitely the unanticipated and better than either of us imagined. So, after such a long run of hard knocks we've all been enjoying doing a little coasting.

Phil continues to slowly gain weight and enjoys eating seconds and occasionally thirds without thinking twice. Even though he hasn't had much of a sweet tooth and he's tightly controlling his blood sugar, he's not been one to turn down ice cream. He'll continue to receive Procrit weekly to build up his RBCs and he's contemplating a more regular walking routine to build his stamina. Ultimately, as he recovers from surgery and all that's complicated his fight, he's making use of this partial remission to strengthen himself for what's to come.

He'll be re-staged for the lymphoma in about 3 weeks with a CT scan of the chest, abdomen and pelvis and we'll have a better understanding of where things stand with that then. Until then it's gratitude, savoring each day and living in the moment.

Monday, November 15, 2010

You Gotta Have Friends

This Monday morning finds us back in the waiting room of the imaging center as Phil has yet another MRI. I've lost count but he must be nearing number 10 or so. Today's scan includes the brain, orbits and sinuses and we're looking at the edema and inflammation to see if it has resolved and of course, getting a read on the Mucor in the basal ganglia to see how it is responding to the increased dosing of Ambisome.

Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it.  We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason!  He rolled with it like a champ.

We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!

On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him.  We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"!  Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be.  Classic!!  Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you".  She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!!  You must know this is said with the most love you can imagine and not some slanderous slur.  

These "yahoos" have done so much for my family, you have no idea.  They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially.  They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school.  The call gave him lots to laugh about and was excellent medicine in it's own right.  These are very good people.

The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results.  We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit.  I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life.  It's going to be crazy but that's the only way we're gonna gitter done.  Bring it!  

Wednesday, November 10, 2010


Many thanks to our friends and family who have so generously given of their finances to Team Conrad.  We continue to call ourselves fortunate to know all of you and to be loved and prayed for by you.

We are deeply humbled in a way that neither of us has experienced before.  In a time of economic uncertainty and struggle, we are blessed to have a thriving community that is willing and able to help us in this way.

You are easing our stress by lifting our burden, thus allowing us to focus on winning this war with cancer for Phil, and for our family's future.  You have our literally, undying, gratitude.

Blessings upon you--

Sally and Phil

Gratitude unlocks the fullness of life.  It turns what we have into enough, and more.  It turns denial into acceptance, chaos to order, confusion to clarity.  It can turn a meal into a feast, a house into a home, a stranger into a friend.  Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.  
~Melody Beattie

Tuesday, November 9, 2010

Hurry Up and Wait

It's getting harder for me to find ways to share what seems like the same old information.  To make our lives seem more interesting to read about than they probably are.  As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family.  Do our lives sound as mundane to you as they feel to us?  Are you getting as antsy to move on with treatment as Phil is?  Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"?  Well, join the exclusive club known as "hurry up and wait".

This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low.  This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily.  Mucor, you may recall, needs the iron to replicate.  Exjade robs the the Mucor of iron.  This is just one more way to combat the Mucor and hopefully send it packing.  Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.

This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things".  Not for the pushovers of the world is ENT.  I know why I called him a Zen Master.  He is one smooth operator.  Anyway... Overall, Phil looks great to him and he saw no signs of Mucor.  He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue).  He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.

Until then, it's start the Exjade and see what that does over the next month or so.  When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile".  So, there you have it.  Awhile, folks.   Just another way of saying "hurry up and wait" which of course is easier some days than others.  Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.  

Friday, November 5, 2010

Supporting Team Conrad

As I write this afternoon I find it difficult to believe that it is November.  Yesterday saw a temperature of 100 degrees in downtown San Diego, the highest ever on record.  It has been 92 and 98 here in El Cajon the last two days and we've had impromptu swim parties after school to close out the first week of the month.  When I consider all that's happened in the last few months, this weather really shouldn't come as a surprise.  After all, everything that's been happening to us has been surprising and unexpected.

Today Phil and I spent our morning with a disability lawyer, answering questions and completing all the necessary paperwork to file for federal disability benefits.  What a process it is too.  You know you are dealing with a governmental entity when they ask you questions like, "did you ever work for the railroad?"  Or if they ask you more than three times "are you a U.S. citizen?"  

Our attorney, Lawrence (Larry) Rohlfing, was the nicest, most down to earth guy you'd want to work with.  After the whole rig-a-ma-role of providing him the detailed story of Phil's diagnosis, chemotherapy, brain infection, fungus-among-us, surgery and recovery details, Larry proceeded to assure us Phil'd be approved in short order for full benefits.  In his professional opinion Phil's case would be quickly approved and after the standard waiting period of 5 months he'd be receiving benefits.  What's more, if things went as smoothly as he predicted, he would not be charging us a cent.  Can I get a whoot whoot?!  It took him at least 1 1/2 billable hours to complete all the paperwork just to submit Phil's application.  You and I know there's more behind the scenes crapola for him to do so that was not an insignificant gesture.  

While this is great news, practically, we continue to have needs financially and will for a long time to come.  Phil has been out of work since this began and I have been unemployed outside of our home as well.  Obviously, my job has been to care for him, manage the medical details and moving parts, and to care for our two young children.  If you are inclined to support us financially, we are asking you to consider a $10 or $20 monthly donation, committing for a year like an NPR fund raising drive - that would give Phil and I a figure that we could budget with.   The wisdom in this approach is to give Phil and I financial peace of mind throughout the uncertainties of the coming year.   If giving a one time donation works better for you that will of course be appreciated as well.  

If you aren't in a position to help financially then please continue to lift us up in prayer, write to us with your encouragement and words of love, and continue to cheer Phil and I on with your words, texts, calls and funny stories.  We constantly rely on the love, support and fellowship of Team Conrad!

Thank you for all that you've done and are doing for us.  We are humbled and amazed at the outpouring of God's love for us!

Livestrong and love one another well!



1- log into paypal
2- click on the <send money> tab
3- type in socalconrads@gmail.com
4- enter $ amount
5- click on the <personal> tab
6- select gift
7- click on the <send> button

Monday, November 1, 2010

Light in the Darkness

This is the quietest this blog has been since it's inception.  There isn't much new to report regarding Phil.  Don't get me wrong, the way the man continues to amaze has become routine and almost blase.  He's building strength and improving every day.  Just this morning he got up before the kids, emptied the dishwasher, loaded it again, and then got them up and helped them get ready for school.  

I don't know about you, but in our household, this is no small feat.  Waking our children in the wee hours of the morning is a risky proposition and not for the faint of heart or for the energy-challenged.  Personally, I usually have a cuppa joe prior just to steel myself for the task.  But Phil?  Not him.  He just marched in cold turkey and did the deed.  He took no prisoners and made it happen.  Yeah, he's coming back online for sure. What's most amazing (and actually challenged my pride a bit, I gotta confess) is that there was no whining. The alpha male is back in action.  Praise Jesus and all He stands for.  I think my pride will survive.

The main reason there's been no communique from moi has everything to do with moi.  I believe I've said it before but it bears repeating.  When Phil does better, I tend to do worse.  Or at least for a while I do worse.  This last week was a crucible and a gauntlet that had to be gone through but like all crucibles and gauntlets, it hurt like hell but I am the better for it having come out the other side.

For all you migraineurs out there all I have to do is mention the word migraine and I have your complete understanding of what I went through last week.  (Non-migraineurs just imagine having the worst headache of your life on one side of your head, right behind your eye, with some degree of nausea and a complete lack of energy, apathy really, for about 6 days).  Combine that with ineffective medication, sleep deprivation secondary to dealing with my children's night terrors and grief reactions and you have the essence of the fog I found myself in.  Unfortunately it didn't stop there.  What migraineurs also know is that there is often a depressive element that comes from being so incapacitated by pain and from living in such an altered state for that length of time.  It was a dark, long and lonely week.  

The hardest part about it all?  Continuing to be chief cook and bottle washer.  Being mom, wife, nurse, chauffeur, cleaner, cook, laundress, teacher, disciplinarian, comforter.  Did I leave anything out?  Oh yeah, being me!  I had a feeling I didn't have much reserve in me but after this past week, I now know in no uncertain terms that I have no reserve.  It's not an indictment of anyone or a judgment.  It just is what it is, a sad statement of fact about the ravages of cancer on the family and the care givers.  So, not only wasn't I capable of writing the blog, but I was also taking a few days rest.  Besides, what was there to write about at that point?

Well, then came Sunday.  I asked Phil to come to church with me and we headed to Newbreak, a church I feel fed by and Bennett enjoys for the kids worship.  Lately the kids will say "I don't want to go to church" but then they have a great time.  This Sunday was no exception.  I told them I needed to go to feed my soul and feel the light of God and I was happy they and Daddy were coming with me.

The sermon was called "Avoiding the Beat Down" and was basically about how to avoid becoming beat down by the battle with the evils in this world.  It was a Halloween theme but I could see all the ways God was talking to my soul - about not being beat down by migraines, being chief cook and bottle washer, by my responsibilities to Phil and my kids, not being beat down by cancer.

After the service I asked Phil if he'd like to receive prayer up front from the prayer team and he agreed.  A bit of a surprise since he's been on a bit of a spiritual journey of late and I didn't know what he'd say.  We went up front and talked with Mike, the pastor who called over an elder, anointed Phil with oil, prayed and quoted James 5:14 "Is any of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord." It was a powerful prayer time and both of us were blessed by it.

When it came time to pick up Bennett from kids worship, he handed me a certificate, very nonchalantly.  When I asked him what it was, he said, "I gave my heart to Jesus today".  It was a Certificate of Salvation they gave out to commemorate the day.  His teacher came over to me and said how excited he was for Bennett and how choked up he always gets for the kids when their names are written in The Book of Life.  Bennett came over and whispered to me that the teachers wanted all the kids to say a prayer together but he couldn't wait and said his silently in his heart while they were all waiting.  So typical!!  I love that boy even with all his impatience.

I had just been talking with my sister Anita about this very thing - what God is up to behind the scenes that we can't see.  What He will do with all this suffering, with Phil's cancer battle, with the story of Phil's amazing recovery from this horrible infection.  How will God use these experiences to further His kingdom and to bring glory to his name?  Because God doesn't waste anything.

As we were walking out on our way to the car I started crying.  I was so happy!  My son came into the Kingdom of God and has started a relationship with the God of the universe.  Right now, while he is so vulnerable, he has Jesus in his heart.  He asked me why I was crying and I told him how happy I was that we'd be seeing each other in heaven.  And that I knew it was well with his soul.  He smiled at me and gave me a big hug and said "It's gonna be OK Mom."  God fed my soul and then some yesterday and claimed victory over the darkness once again.