Monday, December 26, 2011

Looking Ahead

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice --
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.

~ Mary Oliver ~

Friday, December 23, 2011

Thank God Jesus Was Born

WARNING: This is one of those migraine blogs. You know, maybe not my best work. Proceed with caution, I don't tend to do much editing.

I've had a particularly difficult time of it since I last posted. That sounds funny when I hear myself say it in my head because my life has been nothing but difficult for some time now but the last few days have been nothing short of horrendous. I do not write to garner sympathy and I abhor pity but I am personally wondering when this pain fest will let up. Each year, it seems, I have a new insight into the "true meaning of Christmas" and the events of the last months and days have provided me with yet another fresh perspective.

My very old dog Nero may be familiar to you from my posts or from having been around our family. He has been with me for over 17 years and was partially responsible for introducing me to Phil. I was playing ultimate frisbee with mutual friends at Duke (though we didn't know it at the time) and Nero and my Viszla, Sweet Pea ran over to Phil to say hi. Sweet Pea was a very high energy, beautiful and nutty dog and she got his attention immediately. The rest as they say is history. Nero hiked with us all over North Carolina and was a great running partner for Phil. He stuck by my side through 8 miscarriages, the miracle birth of Bennett after 8 weeks of bed rest, the adoption of Olivia from Taiwan, numerous moves, and Phil's devastating illness and death. He never licked, jumped up or ran away. He was "the Bud" to quote Phil. When Phil died Bennett just couldn't believe that a 17 (or 119 depending on your math) year old dog could outlive his dad. No kidding. I used to joke that'd I'd had Nero longer than Phil. Not funny anymore.

Anyway, I had to put Nero down yesterday. It is a long story and one that I am too wiped out emotionally and physically to go into but let's suffice it to say that it involved several weeks of medical interventions, lots of hand wringing and heartbreak. My kids were petitioning for him to remain with us like it was a death row pardon. For the first time since Phil died Bennett spoke about his feelings and frankly said, "Mom, I just can't handle any more death." What a gut punch. None of us wanted to see Nero go but I couldn't take the situation any longer ~ I was as far gone over the edge as I've ever been and I had to be the parent and do the right, hard thing. It sucked. Every minute of it. So yesterday I drove the Bud to the vet and kissed him goodbye. It was a veritable flashback to hospice with Phil and grievously painful.

And then there's today's misery. Woke up with a migraine, nausea and vomiting ~ again. [For those of you wondering, I am on two prophylactic meds including Botox and have had difficult to treat migraines for a long time.] I sent out a quick S.O.S. to my dad and we were soon off to the Urgent Care. They were very kind to me and I was treated fairly quickly. Unfortunately I was stuck 4 times for an I.V. because I was so dehydrated. I am blessed beyond with such caring parents who came and took care of me all day then took my kids for an overnight at their place so I could conk out. A bright spot amid the ruins!

Well, I said I'd been thinking about the "true meaning of Christmas" but to be honest, I think it's more that I have come to see the true NEED for Christmas. Like Bennett, I can't handle any more death either. Or migraines, or hassles, or brokenness in our world. Let me up I've had enough. But there is no end to it is there? My 7 year old daughter wants her dad back and doesn't have the brain power yet to really understand why he can't come back. She can't fathom why God wouldn't want to send him back here to make us all happy again. And my son would rather I stop crying altogether so he won't have to come anywhere near his own grief.

When you think about it, our world is full of days like today and yesterday for people everywhere and I am not anyone special. I just blog about it. There are stories much worse than mine. Mine hurts because it's mine but we all hurt and we all needed Jesus to be born.

From Amy Grant

We believe in God
And we all need Jesus
'Cause life is hard
And it might not get easier
But don't be afraid
To know who you are
Don't be afraid to show it
If you believe in God
If you say you need Jesus
He'll be where you are
And he never will leave you
Sing to me now words that are true
So all in this place can know it...

Sunday, December 18, 2011

I've been in bed more or less for the last 48 hours. Migraines have a way of doing that for me. They exercise control over all my best laid plans and take over my body, mind and even try to move in on soul territory. Fortunately, to use good old scary fundamentalist language "I've been washed in the blood of the lamb" and Satan's minions won't be able to touch me there with their fire pokers from hell (migrainous shocks of searing pain).

On Friday morning, the last day of school before Christmas break, I woke up with a killer headache and nausea and the distinct knowledge that I would not be operating any heavy machinery i.e. a car. When I told the kids of my predicament between waves of nausea, and asked if they wanted someone else to take them to school or if they would rather sleep in with me and miss their Christmas parties, they were in solidarity about staying home to care for me. Never have you heard such sweet children. "Oh Mom, we'll do whatever you need us to." "We won't fight. Promise." "I don't really care about parties anyway, Mom". And just like that, we were all back asleep until 9:30 a.m.

Once the kids got up they pretty much ran things around here. By that I mean there were no fights, no one got hurt and they ate ~ a little bit at least. When I finally stumbled out of my rack a few hours later they were both happily playing on their computer games and had eaten sourdough toast, 2 pears and a bowl of God-awful sugary cereal that I once swore I'd never buy. So much for that oath. The house was stone cold because I hadn't been up to make the fire but they'd improvised with layers, hoodies and blankets and none was the worse off for it. I was immediately thankful. I threw some real food at them and went back to bed to suffer some more in private. Despite a plethora of meds (AND sending a man to the moon) I still can't get rid of my migraines in less than two days.

That evening and next morning were a lot the same until I pulled out of the fog. Now, I gotta stop for a sec and pray you don't think you need to be calling CPS or anything because of my benign neglect here. It wasn't as bad as I've made it out to be. But I think it is high time I give you a slice of the reality you've been asking for and that I've been needing to provide so you don't think me so superhuman. Why yes, I, Sally Conrad, can be a crappy parent (wha? Shock! Awe!) and at times can barely make it through the day - migraine or not. For you see, today is day 3 and I'm finding it hard to break this cycle of being in bed all day and not doing anything. It was easy when the kids were in school, they had no idea. Now they are accomplices with me. I keep checking with them to see if they are OK and they assure me they are. They are each happy playing their DS or on the computer or reading or being by themselves. We are all just hanging out, separately. Part of me thinks we should all be together, "doing our grief" and the other part is loving the quiet solitude of "mischief managed". But at its roots it doesn't feel healthy and I know I have to be careful here.

Thursday, December 8, 2011


I've been struggling mentally to write a blog for over a week.  I deeply desire to keep in touch with all of you and yet it's taken me days and days to figure out what I want to write.  I literally have three or four drafts of this post started.  That's because each time I sit down to write it I'm in a different place emotionally and have an ever-changing point of view.  It makes writing a focused post kinda challenging.  Consider the fact that I haven't been sleeping well at all and you've got a recipe for blog disaster.

Early in the week I seemed to be doing quite well.  I decorated my mantle on the weekend and put my Christmas tree up in the living room.  My home now looks and feels festive and our Advent calendars are up to date. The kids are managing their schoolwork and Bennett earned 100% on a math benchmark test the day after returning to school.  The early week was busily spent managing the details of widowhood. I gathered together the various paperwork necessary to begin the task of managing my financial affairs and planning for my future.  An entire morning was spent in the local branch of the Social Security office and lots and lots of phone calls and letters have been made and written.    

My nights this week have been busy too.  I've had dinner with the neighbors and other friends and it's been nice to have the company and playmates for Bennett and Olivia.  However, time spent with people means there is inevitable conversation about Phil and although I thought I was doing well, I'm clearly not.  Too many tearful nights and not enough rest are a bad combination it turns out.  The first chinks in the armor showed up mid week when I started feeling spread thin and canceled appointments that had previously seemed very important.  Overnight I began to crave my quiet time and the social engagements that had kept me company and staved off loneliness didn't appeal to me at all.  And then this morning, the bottom dropped out.  The kids both woke up in "a mood".  Olivia burst into tears and needed cuddles and Bennett begged for more sleep after struggling all night to get his fair share and calling on me to help him get it.  We were, as a unit, blitzed.  And I was, as a woman and mother, feeling disorganized and totally tapped out.  It was inevitable that I would get to this point but I really didn't see it coming.   Duh. 

I knew that Phil was going to die a long time before he let himself realize it.  My role as wife and caregiver required me to tolerate hearing the hard truth of what Dr. Kossman was spelling out for us at each and every cusp along Phil's arduous road when he could not. Most certainly it was God's grace that allowed me to begin my grieving process for Phil over a year ago.  Because he was sick for such a long time and I grieved so much during the illness I had time to prepare for his death.  But I could do nothing ahead of time to prepare for what I feel now - his absence.  I feel what I do now in each unique moment and before I could only imagine the potential of his absence.  And my imagination fell far short of the reality that is life without Phil.

Sunday, December 4, 2011

PHILIP CONRAD Obituary: View PHILIP CONRAD's Obituary by Pittsburgh Post-Gazette

For those of you who haven't seen this elsewhere ~ beautifully written by Phil's older brother Jamie.

PHILIP CONRAD Obituary: View PHILIP CONRAD's Obituary by Pittsburgh Post-Gazette

Died November 15, 2011, in San Diego, after 15 months of an unrelenting battle against lymphoma and its complications. He was two months shy of 50. Philip's life work was as an orthopedic physician assistant, a calling he practiced in the Puget Sound area for 15 years before moving with his family to San Diego in early 2010. Before graduating from PA school at Duke University, he lived for most of a decade in Park City, Utah. But he is fondly remembered by many in Edgewood, where he grew up, and in the Calvary Camp community. He was an enormous influence on those for whom he served as a mentor, particularly new physician assistants, and kids who he coached on the Edgewood Club swim team or who were in his cabin at camp. He is survived by his remarkable wife, Sally; his kids, Bennett and Olivia; his mother, Margaret, and his brothers, Jamie and David (and honorary brother Jeff Breland). A memorial service was held in Jamul, CA on November 21, and a celebratory gathering will be held in Pittsburgh in early 2012 - watch www .conradfamilychronicles for details. Contributions for Bennett and Olivia's 529 college savings plan may be sent to Anita Sorenson, 1204 New York Drive, Altadena, CA 91001.
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Published in Pittsburgh Post-Gazette on December 3, 2011

Tuesday, November 29, 2011

Now What

It's been two weeks since Phil died and I am only beginning to have time to "be" with my feelings.  As I said before, prior to Phil going into hospice care my house served as Ground Zero and I have had friends and family in my home until just a few days ago.  Include the visits from wonderful and supportive friends and family who flew and drove in for the memorial, the Thanksgiving holiday and the numerous details I must now attend to and you may begin to understand the position I find myself in trying to find time and space to grieve.  Unexpectedly, even my children are cramping my space to grieve.  Their grief looks so much different than mine and tends to manifest itself in the form of irritability and what I like to call "feistiness".  When I say that to them, we all know what I mean and they know they better knock it off or heads are gonna roll (or Nintendo DS's are gonna be confiscated, more likely).

By way of example,things with the kids and I have gone something like this lately.  It's been a long day for all of us, we're tired and worn out from just making it through another day without Daddy (even though I'm the only one cognizant of this little FACT) and patience with one another and the vicissitudes of life has thinned to almost nothing.  (You might guess by now that it is nearing the dinner hour.)  Chances are good that there may be a somewhat questionable casserole-type dish in the offering tonight, provided by a very well meaning soul who has tried hard to help us with our meals.  However, at this point, although very grateful, we are also very much over white rice, cream of mushroom soup and limp vegetables.  These have never been things I could get my kids to eat anyway so they don't go down any easier when they are grieving.  (Father God, forgive me for throwing away so much food when there are starving children in Africa...)  Anyway, the kids start picking at dinner, get more and more hungry and agitated, ask for short order cooked meals, start taking out their frustrations on me, each other, the world and next thing you know they are screaming at each other "I HATE YOU AND NEVER WANT TO SEE YOU AGAIN!"  That's gonna be a tough one since they share a bedroom and bunk beds.  

By this time I am missing Phil a whole lot and my grief has picked a fine time to show up.  As the tears come to my eyes my son Bennett looks at me and tells me I cry too much.  He asks me why I am sad still, why I am sad all the time.  What's wrong with me?  When I ask him if he is sad he says, "No, I'm pretty much over Dad now.  I put it behind me."  Well, thankfully I have a right mind and can see through his juvenile attempts to escape his grief but for a split second I want to wring his neck and shake some sense into him, scream back at him "I HATE YOU AND NEVER WANT TO SEE YOU AGAIN!  HOW DARE YOU!!!"  But somehow, through the grace of God, cooler minds prevail and I say, "OK bud."  By now Olivia has stormed off to her room to have a power pout and a good cry.  She at least will now go write down about 15 pet names for Daddy in her journal and make a list of all the things Phil did/didn't get to do before he died.  My kids surprise me, they are not performing as I thought they would.  I thought for sure my son, the intensely verbal one would talk his way through his grief and Olivia my shy one would clam up.  Just the opposite.  Never ASS-ume.

To say that I was happy that school started yesterday is to put it mildly.  I needed to return to the routine badly.  We all did.  At least to have some forced time and space created so I can just sit still and do nothing if I want to.  Of course that hasn't happened but at least the potential is there if I ever want to pull the trigger on it.  I can choose to be lazy if I want to.  To go back to bed if I feel like it.  To do absolutely nothing.  But surely you must realize that is a joke.  I suppose there will be a very short window for doing that but I happen to have a little book full of things I need to do.  Once the death certificates come I will be a busy woman getting my new life in order.  Until then, I will enjoy this little cushion of time being quiet and resting and enjoying the quiet while my kids are at school and there is space just for me.

I heard that someone recently was asking "What now?" about me.  Really??  I can't believe the answer to that question isn't painfully obvious.  I have two young children to guide through a tremendous burden of grief and loss. I have to figure out how to navigate my own grief which is so different than theirs and will likely do so in a sort of lonely isolation because of how different my relationship to Phil was from theirs.  And I will spend the rest of my life raising them to take as much good from him as I can, largely on my own and yet with the help of my family and friends and those who loved Phil.  

That's is what's next.


Friday, November 18, 2011

Phil's Memorial

A memorial service celebrating the life of Philip Taylor Berry Conrad will be held at Jamul Community Church on Monday November 21st, 2011 at 2 p.m.

Reception to follow at the church.

Jamul Community Church

Tuesday, November 15, 2011

Well Done Good and Faithful Servant

Philip is with Jesus tonight.

His eyes opened and he smiled, then he turned to look at me before exhaling his last. He was valiant until the end. We will miss him dearly.

Well done good and faithful servant.

Saturday, November 12, 2011

The Veil is Thin

I'm finding it challenging to know where to start, what to write, what exactly it is I want to say today.  So much has happened and, in true Libra fashion, I fluctuate between wanting to write it all down so I don't forget a moment of this strange state of being I find myself in, and wanting to just let it be ~ to continue as I've done over the last few days and lose touch with the passage of time and let it ride.  

I'm laying on the bed in the back room with my sister Anita, and she is helping me sort out what is important for you to know about Phil and our family time. Hospice is in place, which means he sleeps a bit more comfortably in a hospital bed in our room, and I feel supported by an amazing team of caregivers. Every twelve hours is a new place in this journey. Phil is comfortable, not in pain, able to smile and comprehend the nuances of conversation, but is slow to respond and fading quietly. 

Our living room is Ground Zero for us most of the day, with visitors and family coming in and out. I am trying to balance Phil's needs and my own, with those of my children and his loved ones who need to see and be with him. It is exhausting and we haven't quite gotten it right every day. I don't know how long we will be in this disrupted space but I do feel that God is holding us. I don't understand how people do this without Him.  New mercies are needed every morning.

Last night I was reading about what it means to "die a good death." Throughout this illness, Phil has never complained, railed against God, or asked "why me?" How many of us could say that? I want to do whatever it takes to accompany him to his good death. Please pray that I can be faithful in the middle of the night when he needs me. And when I need patience and grace to lovingly sort out the kids' grief and emotional pain. 

This is a sacred privilege for me to honor my husband as he leads us all to the Cross. We are catching glimpses of Jesus in these precarious days of uncertainty but we know for certain that all shall be well.  Phil is surely dying but we know that this is ultimately his resurrection story.


Tuesday, November 8, 2011

Update on Phil

Phil is growing ever more weak and fatigued and sleeping more hours of the day, a blessing in itself. We had a weekend of family and friends visiting and he was able to participate in that. It was incredibly taxing, however.

Yesterday with Dr. Kossman we learned his platelets (at 10K) are dangerously low and put him at risk for a spontaneous bleed so he decided to receive one last transfusion. This was no small decision since it meant spending the better part of the day in the hospital being admitted, typed and crossed then transfused only to go home and sleep for the rest of the day with little interaction. We also decided to begin hospice services. It is a huge relief for me to know that I will no longer be solely responsible for the decisions in the middle of the night and that I will have more help walking my children through this painful transition. As for Phil, his desire to die at home with us can now be made that much more comfortable and achievable. I can see in his entire body since making this decision, that he has begun to relax and let go of the fight. I am relieved for him.

Your comments, prayers and scriptures have been nothing short of manna for our weary souls. Thank you for continuing your vigil with us and for describing to us your love and experiences of and with Phil. My children especially will need to reflect on these stories and comments in the days, weeks and years to come.

Thursday, November 3, 2011

Undaunted Courage

I felt badly this morning as I blew my hair dry and put on an outfit that seemed to match just a little too well.  As I pulled on my good boots and got ready to go see Phil in the hospital I felt indulgent for looking so much better than I felt.  For looking too nice. It felt so damned inappropriate because Phil is dying.  

He is in renal failure, isn't making platelets or red cells and is not eating well.  He can't tolerate anymore chemotherapy and has come to the end of his long journey.  Valiance and courage continue to characterize his life and those of us gathered here are blessed to be alongside him as he faces the challenges of the coming days.  

Pray for a peaceful passage for our Iron Man warrior, father, son, brother, husband and friend.

*please respect our family time as we draw together to love and support one another and refrain from phone calls.  Email messages and comments are much appreciated

Cards and letters may be sent to:
1426 Lomita Road 
El Cajon, CA 92020

Monday, October 31, 2011

No Surrender

Another eventful morning for us - Phil woke up nauseated and had dry heaves which has been the norm for over a week now. I suggested we shower together because he was vey unsteady and that way I could make sure he wouldn't fall.  By the end he was totally exhausted and had to go back to bed for awhile.  He was nauseated again and we ran late to the appt.

Dr. Kossman took a good look at him and reexamined all his nodes and systems.  The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest.  His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar.  His spleen is tender but not enlarged.  His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.

Of major significance, his platelets were only 22K today after being transfused on Friday.  They were 20k on Friday before transfusion so are rapidly being destroyed.  Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again.  This is the shortest interval yet in which his pleural effusion has developed.

The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy.  But if there is active disease elsewhere it is very likely to be in the marrow as well.  So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)?  And how do we best judge the overall effectiveness of Campath?

Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort.  It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance.  It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions.  Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding.  He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.

Phil chose to go on with treatment today.  It is going to be a Herculean effort on his part.  Tomorrow will be Ambisone.   Then Dr. Kossman will see him on Wed. and recheck the CBC.  Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.  

And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.

Sent from my iPad

Sent from my iPad

Wednesday, October 26, 2011

God at Work

Not wanting to sound like Debbie Downer all the time I thought it might be a good exercise for myself and a nice testimony to share with you the myriad ways God has shown up lately.  Bennett has been having difficulty getting to sleep so we have been praying specifically every night.  His anxieties about all that is going on and the tremendous stress he is under culminate at night so he is struggling a lot.   He has had tears, fears and separation anxieties and they have been brewing into a real sleep disorder. Accordingly, I have been talking a lot about the promise of peace God makes to us in Philippians 4:6-7 and Bennett and I have been praying together every night about Phil, the range of emotions he is experiencing and God's big plan for our lives~ even when we can't see or understand what He's up to.  It's been one more intense road to walk down with my son on this journey with cancer.  A heartbreaking path but also a wonderful opportunity to share with him the Truth of who God is and to teach him about the loving and faithful character of God.

Philippians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  

My sister Anita recommended that I write down on Post-It notes or in a journal how God answers prayers so Bennett can see God at work.  He's been told many times about the story of my pregnancy with him and his miracle birth (Post-It #1) and we will be adding to his original Post-It from now on.  

As for my list, it starts with a conversation I had on Sunday.  I've been attending church at Jamul Community Church where I feel loved even though I'm hardly known, which Bennett absolutely loves and which Olivia is slowly warming up to (per usual).  My dear neighbors Jim and Catherine and their daughter and son-in-law go there as well.  Pastor Gary has been teaching from Luke and each sermon I've heard has seemed especially meant for me.  I can't make it every Sunday due to Phil's health status but this past Sunday I was able to go and spoke with Pastor right after service.  I could barely talk because I was so moved but I told him how overwhelmed I am and how difficult it is to get there regularly, how I needed help, etc.  Before I finished getting the words out, he took my hand and said the body was there to help and asked if he could he pray for me.  He put his arms around me and said he was a "hugger" and hugged and prayed for me and my family while we both cried.  It was...perfect and beautiful and the comfort I have needed from the church body for so long.  I have found my church home.  Hallelujah!

Yesterday I called the church office and talked about needing meals a few times a week and to have some firewood cut up on our property.  Within a few minutes a woman from the congregation called me and by that afternoon she was at our house delivering a casserole, salad, fruit and garlic bread.  She also has an idea for getting our wood cut and stacked and just needs the go-ahead.  She is part of a care group and they want to more or less adopt us.  Later that evening I was telling all this to Jim and Catherine over our fence (and thanking Catherine for the generous check she gave me last week along with a beautiful basket of pumpkins).  We talked about how challenging it still is for me to ask for help and how I am trying to stop saying "No" for everyone.  So, I told them about the firewood and our poor heating situation - another blog topic perhaps - and she texted me later that evening to say she and Jim had firewood to bring over to us today.  I said Yes they could bring it over : )  

Lastly, earlier in the day I had a visit from Trenna.  She told me that she and several of our friends had talked about either taking me out to make Dream Dinners or if I couldn't go, to make them for me.  She and her work out partner also plan on taking a day off from "real" working out and coming over here instead and moving all my boxes off of the dank floor and onto pallets in my storage area.  What I did to deserve such love and acts of service I'm sure I don't know ~ it's the Body of Christ at work in the lives of His loved ones.

God IS showing up and He is blessing us demonstrably in this maelstrom.  Take note Bennett!  The Post-Its are piling up because He loves you and I and Olivia and your Daddy fiercely.  You will sleep soundly again.  Great is His Faithfulness.

Sunday, October 23, 2011

The Great Haircut

Who says chemotherapy patients don't have hair?

Phil has grown quite a bit of head and facial hair over the last few months and we've finally had enough energy and time to sit down for a proper cut. Since it's been almost a year since I've posted any photos of him I thought it only fitting to let you in on our little salon moment. Try to ignore my desperate need for a dye job. That's on the list to...

It was a beautiful afternoon here, mid 70's with a slight breeze. We had been sitting in the sun with his mom Margaret who is visiting and I impulsively said, "Hey Phil, do you want me to shave off your beard?"

He was all about it. After hunting around for the hand held clippers and ensuring that they still had batteries we were off to the races. In less time than it takes to access his port he was trimmed back to his usual self and smiling again. All that's left is a close shave!

Best part of all? Bennett telling Dad he looked like himself again :)
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Monday, October 17, 2011

A Better Day

Phil came home from the hospital on Saturday after his blood sugars came down to normal. For you medical people out there, he was metabolically acidotic (highest blood glucose was 588) and required 2 units of packed RBCs and a unit of platelets. The Campath had taken his hematocrit down from 30% to 24% in 48 hours. Seriously potent stuff.

Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that.  Overall, it was a much much better day!  

Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given.  His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!

The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered.  We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.

Saturday, October 15, 2011

A Moment's Rest

I suppose if you wait long enough things do change.  In our case, Phil's blood sugars came down, he was transfused with platelets and RBCs and we both got some much needed sleep.  My migraine finally subsided and my hacking cough has settled down a bit.  I hesitate to say that we both feel more like ourselves again.  He certainly is looking more like himself than he has in about three weeks.

The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through.  I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast.  There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance.  Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.

Yep.  The next round.  It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it.  Phil does have the option of stopping the Campath and will have the weekend to consider this option.  He know's it's his last best option for a chance at remission.  He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for.  There is just no way of knowing.

His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control.  He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital.  Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep.  His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates.  I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage.  The road ahead narrows and his options lessen daily.  Nothing is easy or clear cut anymore.  I believe Monday will tell us a lot about the direction things will go from here.  

Until then we will enjoy Phil feeling better and having energy.  Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is.  There will be joy in our home, laughter and respite from the troubles of the last few weeks.  We will enjoy this temporary peace.  We will rest.  We will be together.  Blessed be His name! 

Thursday, October 13, 2011

More Crap Different Day

Well the hits keep coming and it is only natural to ask "how much can one person stand?"  Apparently the answer to that question is "quite a lot" because to coin a popular 60's advertising phrase ~ Phil takes a licking and keeps on ticking.

This morning found him admitted to Alvarado Hospital's 3 South with very high blood sugars, dehydration and nausea and vomiting.  The last 48 hours have been brutal to say the least and absolutely heroically endured.  Phil had been struggling with nausea that barely responded to his medication, dry heaves and vomiting and the discomforts that come with blood sugars in the 400-500 range (normal being 80-120).  He's had no appetite, was dry mouthed and thirsty all the time and couldn't sleep. Incidentally, every bone in his body hurts, he's stiff all over and unstable when walking too.  Sheesh. Brutal, brutal brutal.

Dr. Kossman checked Phil over thoroughly this morning and ordered an MRI of Phil's head to check on the status of the mucor, a chest xray and blood cultures to rule out infection as an additional cause of the high blood sugars and a whole host of labs.  (As of this post his MRI and chest xray are unchanged from previous).  Phil has a slightly enlarged liver which could be from progression of the lymphoma ~ we won't know that until he has a CT scan of his abdomen tomorrow.   This could all be secondary to the Campath so it is on hold indefinitely until things settle down.  The first priority is stabilizing the blood sugar and returning his metabolism to a normal state.  He will have one on one nursing with an IV insulin drip and hourly blood sugar checks until his blood sugar is normalized.  Each hour the sugar has been coming down and he has felt better with the fluids, well enough to eat some of Alvarado's fine fare.  

Unfortunately, his platelets and hematocrit are very low and he will be getting both platelets and RBCs today.  This is either a result of the Campath or from furthering disease in the marrow - a real shit show either way.  Fortunately we live in an age of pharmaceuticals and transfusions so with a little tincture of time and some good nursing Phil will be feeling about 500% better than he did this morning.  I plan on bugging out of here soon to get some much needed sleep for a few hours then I'll be back in the morning to see what's transpired.  Lord willing, there will be a bit more breathing room.

Monday, October 10, 2011

The Hardest Times

I've had some tough times in life for certain but these last few weeks have been the toughest.  I thought about keeping a record of all the mini-tragedies and the macro-drama but I lost heart and lost count after awhile.  Besides, after a point, what is the point?  It only makes me feel like a pathetic sad-sack.  Suffice it to say that a lot more shit has gone down around here since the last post.  In general terms, Phil has continued to slowly deteriorate, my children and I have continue to watch it, my TO DO list grew and I became engulfed by it, and lastly I succumbed to yet another heinous migraine episode which was not ameliorated in the slightest by the Urgent Care Cocktail I'd been prescribed.  I hit my wall hard and knew it was time to call in reinforcements.

Enter Tricia Reece.  My best friend and the hardest working woman I know from Washington.  She has loved my family for over a decade and has seen me through every major crisis.  We are twin sisters from different mothers if you know what I mean and there isn't anything we wouldn't do for each other. She also happens to adore Phil and my kids and they her.  She rocks.   Since her arrival she's cleaned my bathrooms, steam cleaned my carpets, cooked, folded laundry, entertained my parents, doted on Phil, taken Olivia on a date and endured the puppy licking her toes.  That's love.  Today she's taking the kids shopping and to the beach so Phil and I can do medical appointments.  Yes, she rocks.  Love love love her.

Phil and I will be seeing Dr. Kossman to review the PET scan and hear about the progression of disease in his chest and pleura and hopefully Phil will get yet another thorocentesis.  You know he is feeling badly when he asks for one.  He has been extremely weak (as weak as I've seen him) and very short of breath.  He is exhausted by taking a shower.  Today is the day he is to start his new chemotherapy as well - Campath-1H, a monoclonal antibody designed to attack and kill off T-cells.  It kills all T-cells so he will be very immunocompromised.  It will be a big day and there will be a lot to talk about and hopefully accomplish.  I have no idea how long we will be gone when we step out the door.  I have no idea what we will hear when Kossman tells us about the report or what to expect from the chemo.  But as ever, I do know God will be with us.  I do know Tricia will be with my kids.  I know we will be held in the hands of love and will be OK.  I know that at the end of the day we will know more than we do now and that Phil's suffering will look different than it does now.

Saturday, October 8, 2011

Ten years ago today God fulfilled our wishes for a baby.  It had been over five years of grief, sorrow and barrenness and after 5 miscarriages, countless tears and unending prayers, Bennett Fischer Conrad was born.  Today we are celebrating his enormous spirit, his lust for life and our deep love for him.  

God answered our cries and heard our prayers then and this is the same God to whom we are calling out to today on Phil's behalf.  He is faithful and hears the prayers of his people.  Those were long years and they were filled with sorrow and grief.  But they were also filled with times of intense blessing during which our marriage was solidified and our faith was deepened.  Although understanding is sometimes hard to find in the midst of our circumstances, we trust God to be faithful, again.  That doesn't mean we will receive what we want, but that God will remain with us throughout all of what comes to us.

     "You give and take away. You give and take away.  
     My heart will choose to say, Lord blessed be your name."

Friday, September 30, 2011

Another Relapse

It’s been entirely too long since I last posted.  There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time.  I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words.  Until now, that is.

A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it.  It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc.  Thankfully I didn’t post it and don’t have to back track.  Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.

A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend.  At that visit he told the doctor that he found some new lymph nodes above his left clavicle.  At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for.  Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason.  The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.

Phil did have a great time and returned home thankful to have seen his lifelong friends.  But he returned home tired with a sore chest and difficulty sleeping at night from pain.  The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung.  He immediately became nauseated, had severe pain and was dizzy and lightheaded.  We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics.  A rough, tough, homecoming.

The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse.  The Percocet he took for pain at home was not holding him through the night and he was exhausted.  Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well.  There was also a new one in his axilla (underarm).  With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse.   As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”

So.  No bone marrow transplant.  They are not done on patients who are not in remission. On that note, neither brother is a match.  If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry.  This also means he will stop the nelarabine chemotherapy.  It is no longer working.  He will move on to the next option called alemtuzumab or Campath-1H.  It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them).  Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor.  He will have to resume ambisone, his favorite!  

He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment.  That is scheduled for the middle of next week.  Until then he will basically be untreated and in an unopposed disease state.  That means more suffering and discomfort for him.  Our kids clearly know he is ill but we have yet to explain the full extent of what is going on.  Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.   

Thursday, September 15, 2011

The Results Are In

Our Wednesday morning came and went with little fanfare.  It was a very quiet day around the oncology office.  Sort of strange for midweek but peaceful and restful none the less.  Phil had his second dose of chemotherapy and spent the morning dozing with the other patients in the "chemo-lounge", chilling in a wanna-be Lazy Boy with a crocheted blanket draped over his legs for comfort.  The hours pass slowly so he usually reads or dinks around on my iPad, checking emails or looking at "bike porn" as I refer to his habit of looking at either motorcycles or bicycles on the web.  Wednesday he mostly sat around awaiting for the results of his thorocentesis cytology to come back.

When Dr. Steven Kossman shared the results with him it was in hushed tones.  There were lymphoma cells in the flow cytometry.  Not a lot maybe, but they were there.  This isn't the news we were hoping for but certainly what we knew was probable.  It was disheartening to say the least.  And confusing.  We still don't entirely understand why Phil continues to get these effusions or know if they are an impediment to his BMT future.  When I picked him up from his session, Phil was tired, slightly nauseated and bummed, but being Phil, he was trying to put his game face on.  As soon as he got home he was on the phone to his contact at UCSD, calling to get answers about what this means for his situation with the BMT.

What he learned for now is that BMTs are best when patients are in full remission but they are performed for patients who are not in remission.  We are still moving ahead with our process and have been asked to come in on Tuesday to meet with their social workers to discuss the whole process and learn more extensively about the demands on me, the care giver, the family, Phil himself, etc.  The results from his brother's David and Jamie's HLA match testing should come in at the end and middle of this and next week, respectively.  In the meantime, Dr. S. Kossman will confer with Dr. Ball on the next appropriate course of action regarding chemotherapy (if any changes need to be made) and Phil will follow up on Friday to continue with the last treatment.  

Our seemingly forever process moves forward and the roller coaster keeps rolling.  Stay on your knees.

Monday, September 12, 2011

Again with the effusion?

We're back in the office again, seeing Dr. Steven Kossman this time around since his old man Charles is on photo safari in Botswana. (I just gotta say I totally dig Chuck's choice of vacation spot, by the way.) Anyway, Phil is due to start another round of chemotherapy today but he's been feeling really crappy this week. His energy has been poor and he continues to have left sided chest discomfort and a weak cough.

A chest xray was done last week which showed a small infiltrate (a haziness) in his left lung but NOT an effusion so he was started on an antibiotic to treat a possible infection. So here we are and he still feels fairly rough around the edges though he's had no fever or sweats, no chills or other signs of worsening infection. According to Phil, this deal in his chest feels just like the other two effusions he's had prior to this, one on his right side and one on his left side. As of about a month ago, his PET/CT scans and bone marrow biopsy were really good so we are a bit confused as to what might be causing this again, if indeed it is another effusion.

His blood counts and lung field exams today were mostly normal. There was some dullness on the left but not enough to stop him from receiving his treatment. The plan was to get the chemotherapy this morning then go over to the hospital for an ultrasound of the lung and tap it if it is an effusion. Otherwise, it's full steam ahead. Keep on beating on this sucker with chemo until it's fully gone.

Phil's ultrasound showed he definitely had a large left-sided pleural effusion. The radiology techs drained off more than 1 liter of fluid and Phil is much more comfortable. The fluid will be sent off again for all the usual studies, including ruling out further lymphoma involvement/advancement. It is a "paranoid" time per Phil. To be on the brink of the BMT and to have this spring up again is very frustrating and disheartening. Especially because it was the tap of his left lung that came back positive for recurrence before. Phil said today that he realizes this is a bit like a "wrestling match" and that no sooner does he get one thing pinned down then he's got another situation popping up somewhere else. There is always a new opponent it seems.

He is scheduled to fly to Atlanta late next week to spend time with his best friends and his hopeful prayer is that he is well enough to do that. Of course, wisdom and discernment about the best choice for his ultimate health is our ultimate prayer request. With the BMT option on the horizon, each decision from here on out bears very thoughtful scrutiny.

Phil is very physically tired from the successive and cumulative toll of 3 (and now a 4th round) of chemotherapy. He is run down emotionally and psychologically after more than a year of chemo/surgery and complications and now, from confronting the daunting list of things that will be required of him for the BMT. Your faithfulness, your cards, wall posts, emails and prayers are keeping us all afloat as we walk through this most difficult of journeys. We continue to rely on you more than you will adequately know. You, the unseen team we look to for strength and determination when we feel depleted. I personally have felt revitalized this week and covet the prayers said in my stead. Thanks Team~

Friday, September 2, 2011

Be the Match Registry

Anyone interested in learning more about becoming a bone marrow donor can find everything in one place at Be the Match Marrow Registry at

Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry® to find a match to save their life.

Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. For a successful transplant, a patient needs a matching donor. Special testing determines whether a patient and a bone marrow donor or umbilical cord blood are a good match. The closer the match, the better for the patient.

Race and ethnicity matter!
Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.

Your heritage can make all the difference. If you are from one of the following communities, you are especially encouraged to join the Be The Match Registry or donate umbilical cord blood:

Black and African American
American Indian and Alaska Native
Asian, including South Asian 
Native Hawaiian and other Pacific Islander
Hispanic and Latino
Multiple race

Thursday, September 1, 2011

Game Changer

The results are in and things couldn't look much better. Phil's bone marrow biopsy appeared normal morphologically (regarding the form and structure of the bones) and the flow cytometry studies (the microscopic function) were also normal. His marrow is back to an absolutely normal healthy state!

His PET/CT scan showed a residual 1.3 x 2 cm chest nodule which is barely hyper-metabolic (active), some mild residual scar tissue around the heart with no metabolic activity, scarring in the thoracic vertebra and pelvis with no metabolic activity and no remaining pleural effusions. This is an excellent report! So excellent in fact, that Dr. Kossman referred Phil to Dr. Edward Ball, Bone Marrow Transplant Specialist at UCSD's Moores Cancer Center for a consultation. We saw him and his staff yesterday for an educational and inspiring overview of bone marrow transplantation (BMT) and left with a binder full of information and directions about what our next steps are.

Phil is heading into the very down days of post chemo exhaustion so BMT is not on his front burner at the moment. However, knowing that it is now within the realm of possibility after so many setbacks and complications and so much suffering, I can say on his behalf that we feel a measure of relief and the beginnings of real optimism for a cure. These are VERY difficult words for either of us to say, needless to point out, ideas to think about or entertain. I would appreciate your continued prayers as we negotiate the next steps in this journey.

More details about BMT will be coming in future posts but here are the high points from yesterday's consultation:

1) Phil is definitely a candidate for BMT.

2) Due to continued concern for possible mucor infection, he will remain on his oral antifungal agent throughout the entire process of BMT.

3) The first step involves insurance (of course) and getting all the ducks in a row in order to do the HLA (human leukocyte antigen) testing of his brother's to see if they are a good match. They represent the best chance for an optimal match. From there we will go to the National Bone Marrow Registry.

4) In the meantime, Phil will continue his chemotherapy and is scheduled to begin his next round on September 12th. We have a follow up visit with Dr. Ball in about three weeks and will be doing a lot of reading in the meantime. It feels good if not daunting to be changing gears again.

Tuesday, August 23, 2011

Phil's Latest

While I was in WA, Phil finished a second round of chemo.  His mother and brother David stayed with him and saw him through the down days.  He had no complications, thank you Jesus, and managed to go on some sightseeing outings with his Mom toward the end of the cycle.  He is scheduled to start a third round with the nelardapine this Wednesday/Friday/Monday.

Phil had a bone marrow biopsy yesterday and it was quite the painful experience.  That is actually a good thing in his case.  It suggests that he has nice hard bones and not diseased lymphoma growing in there.  Dr. Kossman said as much and confirmed this when he was finished with the procedure - having had to take two, not one, core sample from Phil's pelvis.  OUCH. OUCH.  The final pathology results will take a few days to return but from the sample Dr. Kossman took the tissue looked fine and felt like cortical bone (synonymous with compact bone, it supports the whole body, protects the organs, stores and releases chemical elements such as calcium, etc).   This is exactly what we wanted to hear!!

Today Phil will be having a PET/CT scan to re-stage his cancer. The PET scan images the biology of disorders at the molecular level while the CT scan provides a detailed picture of the body's internal anatomy.  Together they give pinpoint information about the cancer's activity and guide decisions regarding treatment.  We want to hear that all is clear and Phil is in remission again.  He will complete this third round of chemo and then...

We'll be having a conference with Kossman on that soon.  Everything has changed since he relapsed and with this new chemotherapy.  Once we know where he stands with the new cancer staging we'll know what comes next, what to expect for the longer term picture.  Stay tuned Team Conrad and thanks for being with us this far!

Together Again

I've returned from Washington and am ready for whatever comes next.

It never ceases to amaze me what a healing effect time spent with people who truly know me has on my well being.  My peeps in Washington have walked so many miles with me - they literally prayed our kids into existence with me, saw me through painful, ugly times and then celebrated and partied with me like it was 1999 when those times passed.  It was balm for this gal's weary soul just to BE with them.  It didn't matter what we eventually ended up doing because it was the being with them that mattered.  Of course it didn't hurt that we went shopping and bought new shoes and outfits, went boating and drank cocktails at the lake, took my kids inner-tubing and wake boarding, explored my girlfriend's garden and saw all the plants I'd given her flourishing under her care and just sat around going deep in conversation. It didn't hurt that I walked right into their closets and pantries like no time had passed, borrowed what I needed, our daughter's swapped clothes daily, and life picked up right were it left off.  I stepped into my old life from my current life which up until now hadn't felt like much of one.

It's funny though, I was tired A LOT while I was there and remarked to myself that the pace we were running at wasn't that fast, in fact it was a normal pace for the "old" me.  It's just that down in San Diego, we don't do that much socially and I was out of shape and practice.  It was informative and telling.  By the time we left I realized that the kids and I were ready to return to our quieter lifestyle.  The life we live here is slower and less social due to the constraints of Phil's cancer and the limitations it puts on all of us.  Still, Phil and I have purposefully hunkered down and drawn close together, choosing to spend our energy on our Conrad quartet, creating memories and influencing the kids' character for the long run.

While in Washington, I overheard someone remark about how much I'd changed since the last time she'd seen me.  Being a woman I wondered if she thought I looked tired.  Older and run down?  Or was it because on that particular occasion I'd only paid a little attention to my hair and make up when in the old days I'd have been totally put together?  In the end it didn't really matter because it was all true.  I am tired and I am older and I am run down.  I don't spend much time on my hair and make up and in fact, I cut my hair short in Washington so I don't have to style it all the time.  At first I felt really sad at this remark, and that feeling does come and go from time to time but then I remind myself of what I truly care about - my kids, the memories we're creating and their character.  I don't want them caring about what my hair looks like or whether my make up is totally put together or not.  I'm more interested in the moment and in the healing effect of just being together.  We seem to have found that in the slower pace of our quartet for now.  Going back to my old life showed me that.  How strange and how refreshing that was to learn.

Tuesday, August 2, 2011

Finding Your Happy Place

Apparently 3 weeks have gone by since my last post. We've been in and out of one form of fatigue or another during this time and suffice it to say, there is a reason you haven't heard from me. Personally, I've been wandering in a desert of sorts; a desert of fatigue, migraine, emotional distress and even abject nothingness. What's more, this is a desert within me and a landscape I hardly recognize as myself. It makes me sad that cancer's fallout has taken up even an inch of real estate within me, let alone what feels like a parched acre of my soul that will forever be altered.

Tomorrow Phil starts his next round of new chemotherapy and we are thankful- that the chemo appears to be working, that he is able to actually stick to this regimen of every 3 week treatment, that he recovered quickly from the last round without any complications. But honestly, we are tired and have to remind ourselves to stop and count our blessings sometimes. I could be imagining it but it feels like it takes us days what it takes others hours to accomplish, hours what it takes others minutes. We move at a pace unlike anyone we know and share a lifestyle with no one.

I will be taking Bennett and Olivia up to Washington for a visit next week and we are all looking forward to them seeing their cousins, some classmates and to driving the old neighborhood. For me, it will be a much needed getaway but also a bit anxiety-filled. Phil will be at his lowest while I'm gone and that can be a fragile place. It is a place, by his side, that I've always been and yet he and I know that it's in my best interest to sit this one out. His mom and brother will (with Terry, Josh and my parents) be here to care for him, providing me with the respite I need as well. Time to find my happy place again.

Tuesday, July 19, 2011

A Way to Live

We're at the end of a long week of chemotherapy now, having awoken bright and early every other morning to get to the hospital for morning rounds (7 a.m.) for the medication we're pinning our hopes on.  At first I kinda liked this new way of doing chemotherapy.  I falsely thought it would end up being a lot easier on me.  Trick!!  

On the face of it, it sounded pretty good- no more 4 day stays in the hospital for Phil with the horrible food, the long absences away from the kids, the long stints of my single parenting.  I really don't know what the heck I was thinking.  I mean, the man is doing chemotherapy still and is a hurting unit.  And this business of getting up at o' dark thirty to be at the hospital by 7 a.m., driving there in morning traffic?  I am a Lehmann for God's sake.  We don't DO o' dark thirty, at least not well, and certainly not arrhythmically every other day for crying out loud.  That is a one way ticket to a migraine or at least, major connective tissue pain.  My sibs ~ Anita, Terry, Cherie, Peter and Stephen ~ can I get an Amen?  You may not have to be a Lehmann to be shanked by this schedule but I can testify that it sucks big time.  I do think it is better than having Phil inpatient for 4 days for sure, but on my end, it has been pretty ugly.  Just ask my kids - they'll set you real straight.  I haven't been the Mommy I want them to remember when they look back.

Perhaps it's the mild heat wave, perhaps it's that I'm still unpacking and trying to find a place for everything and I don't like the level of chaos around me.  Perhaps it's that our house is a bit of a jalopy and keeps presenting me with opportunities to breathe deeply.  Perhaps it's that Phil and I are coming up on our 16th wedding anniversary a mere week prior to the one year anniversary of his diagnosis and both feel so deeply depleted that celebrating isn't precisely on our radar.  One things for dang sure, I am losing my ability to let things roll off my back.  Nope, things have been piling right up.  

And then, Saturday night a compassionate group of loving, generous friends and childhood neighbors, led by the amazing Kathi Taymans McShane, came together in Pittsburgh for an auction and raised nearly $10,000 on our behalf - because of Phil and who he is to them, who he was as a kid in Edgewood.  Because of cancer and the scourge it is and the way it has touched and hurt many.  Yet again, as I reflected on how sick and tired I was of being sick and tired, someone in the body of Christ came alongside to do what I could not.  Kathi showed me when I could not see or recall it to mind that God is at work through His people, surrounding us with many shoulders to carry this burden - prayerfully and financially.  Through people to love on my kids when I'm not Mommy of the year and friends who call or drop me a note to remind me I'm not living in isolation.   

Phil is in the recovery phase of his chemotherapy now.  Tired, tired, tired.  And me?  I am in crisis stage again, I just didn't recognize it for what it was until now.  I am tired, tired, tired.  I do not know what will happen for my husband or for my family.  I'll hope to know more in about three weeks.  Then there will be another decision tree and yet another path on this road.  This really isn't any way to live.  But hey, it really is. 

Thursday, July 14, 2011

Today Was a Good Day

Yesterday was the first day of Phil's new chemotherapy drug, Arranon (nelarabine), and he did pretty well with it. We arrived at 7 a.m. to 3 South and although they were expecting us, the pharmacist waited until we'd fully checked in to prepare his medication and send it to the floor. It costs $6800 per dose so they don't take any chances with no-shows. By 9:30, after his pre-chemo medications and several mis-starts for one reason or another, he was on the I.V. and doing fine. It only took about 2 1/2 hours and then after a little bit of paperwork we were on our way home. Incredible compared to those 4 day stints!

Some mild nausea was about all Phil experienced while in the hospital and it passed once he took his regular medications at home. It wasn't until early evening when he really crashed and felt the full effects - turning into what looked like a couch pillow, slumping over with zero energy and literally running out of "gas". It was off to bed and a hard night's sleep. Thankfully though, no serious side effects.

Today went fairly well. He watched the Tour de France (on Bastille Day!), ate well, and even managed a few trips to help me take things to the storage area below the house. Amazingly, he felt well enough to happily agree to have two of the kid's playmates over and slept like a newborn baby on the couch while they ran in and out of the house screaming like banshees. That tells you a lot about where he was today. God how I wish I could sleep that deeply.

Tomorrow and Sunday he gets up and does it all again. Then we watch and wait over the next 2-3 weeks as his body takes it's time to recover and the cancer cells hopefully die a quick death. In another few weeks when he is feeling stronger he will have his CT scan repeated and we'll see where we are. See what the future holds. But that comes later.

We live our lives one day at a time and today was a good day.

Monday, July 11, 2011

Power of Prayer

My sister Terry is currently in Israel in conjunction with her work as a mammography technologist and educator working for the Department of Defense at Naval Medical Center here in San Diego.  In addition to lecturing and educating the local professionals, she is sharing her travels with her son Josh, my nephew, whom you've heard plenty about and he is enjoying some well-deserved R and R.

As Terry said before she left, it feels weird for our families to be apart.  They have been on the frontline during this siege from day one and have been there for every single episode in the saga.  They are on speed dial, know where everything is in our house, know the kids routines for bedtime, and have our backs for everything and anything.  There is nothing they haven't done for us or won't do.  It's just an understanding and it is priceless.

Having said all that we are so happy for Josh's opportunity to go with Terry on this trip, to see the wider world and take a break from being amazing for awhile.  For him to just be a 27 year old guy and live for himself a while.  We'll be here when he gets back, believe me.  And Terry, well, Mother Teresa she will always be.  But for the next 10 days or so she can ponder the mysteries of the Holy Lands, refresh her soul, deepen her faith and capture the beauty of it all in her camera lens.   

No matter what, they are ceaseless in their efforts on our behalf, and they continue their prayer efforts half way around the world. We are blessed to have them as family.

Josh praying at Christ's Tomb 

Candles at The Church of the Holy Sepulchre