Connecting

I recognized something in a man's eyes today. Weariness and fatigue pressed down, dimming most of the light in his beautiful blue eyes.  It was all there in his face, the bags under his eyes, the dullness of his complexion, the inflammed watery eyes revealing a chronicity of poor and inadequate sleep.  Oh how I've seen that face in the mirror, looked in those same blood shot eyes.  That old school-ground taunt, "takes one to know one" was never more true than today.  This man's wife is dying.  After five years, she is nearing the end.  

This recognition came about because I walked up to introduce myself and make a comment to him after hearing him speak.  I had wanted to encourage him to follow through with writing something he'd spoken about so passionately.  He'd said, almost in passing, that he'd probably never get around to writing it.  It was as I shook his hand and gave my encouragement that I looked him full in the face.  The details of how we got from point A to point B don't much matter but we were soon sharing our stories and I immediately felt a deep compassion for him.   We only spent about 5 minutes together ~ talking and understanding and holding each others pain.  Two total strangers, empathizing.  Bennett came over and joined us for a few minutes and as I introduced the two of them Bennett immediately connected to the man and shared some kind words and a tear.  It was a beautiful and powerful few moments.

The rest of my day was nothing if not routine.  I cleaned up the house and fed the kids. The Steelers lost a gut-wrencher of a football game in OT.  I got cranky and was more short-tempered with the kids than they deserved, truth be told.  We talked it out and hopefully we learned something for next time.  But for a while today, against the backdrop of our very grieved and confused society, I met a stranger and we connected over pain and heartache and weariness. 

Life is Beautiful

“Life is Beautiful” directed by and starring Roberto Benigni is the story of a devoted father and his son who end up in a Nazi concentration camp.  In an attempt to hold his family together and help his son survive the horrors of the camp, the father imagines that the Holocaust is a game and that the grand prize for winning is a tank.  At the time the movie came out I didn't have any children, but just watching the previews and imagining what the father had to go through, the pretending and the elaborate charades, it was unbearable to watch, let alone consider being in that position myself.  And the title?  I knew what it was suggesting but I just couldn't get there at the time.  I love movies and will watch most anything across all genres.  I've never seen this movie and I probably never will.  At first I just didn't want to "go there" but now, it's a moot point.  

See now, I get it.  Life is beautiful.  Although I haven't been through anything nearly as horrific as the Holocaust I know what it is to want to protect your children.  Protect them from seeing their young, strong, capable father slowly wasting away in front of them.  Shield them from the realities of depression and cancer and chemotherapy and grief that encroached on our lives and their childhood.  And yet.  To deprive them of these basic truths of their lives would have been to deprive them of all the beauty that is life.  I don't need to see the movie because I've lived that story.  I don't need to watch it unfold on screen and ask myself "what would I do in a similar position?"  I was refined in the crucible of Phil's unrelenting illness and death.

I am a mother and although my first instinct will always be to protect my children, I also take into consideration what is ultimately best for them.  When a teachable moment comes along I seize it, because in their lives, as in mine, it is what it is.  With Phil's cancer, we were all dealt a shitty hand, he more than anymore.  But I tell you, the way that man played his hand was inspiring to watch and be a part of.  I am changed forever.  If I'd shielded Bennett and Olivia from that by pretending or sugar-coating it, it would have diminished what he was teaching them in the face of his greatest challenge and what I believe will be some of their greatest life lessons going forward.  Phil was showing them that life is beautiful and worth fighting and suffering greatly for.  He was showing them that love is beautiful, that family matters, friends matter, faith matters.  He taught them how to suffer with dignity and die well.  Phil lived a life of love and was a good father to his children to the very end.

Thank you Phil, you are beyond beautiful.

   

Ch-Ch-Ch-Ch-Changes

After writing the last post I went back and read the blog I posted at this time last year.  It was very instructional and surprising at the same time.  It reminded me to consider perspective yet again.  As I well know but often forget, things can change very quickly, in a matter of minutes.  Other times they change imperceptibly, particularly when we are marking time and hoping for a specific outcome.

This time last year Phil had a normal bone marrow biopsy and a PET scan showing that his lymphoma had regressed and he was responding well to his chemotherapy.  There was a small area in his chest which appeared to be residual scar tissue but otherwise he was looking fairly good.  We were referred to UCSD for a bone marrow transplant consultation where we set those wheels in motion.  We were cautiously optimistic even though the lymphoma continued to plague Phil with effusions.

And it was around this time last year that Phil went to Atlanta for a buddies trip - to see his high school friends whom he'd been getting together with for years.  It was a calculated risk, that trip.  He had developed new swollen lymph nodes prior to his departure which we weren't certain about.  By the time he came home from that trip he was drastically altered.  He came home with another pleural effusion and over the course of the next 2 1/2 months he'd deteriorate quickly despite an incredible will to live.  

Two and a half months.  I don't recall things changing so quickly or declining so rapidly.  Each day was crammed with so many things to attend to, appointments to keep, endless emotional ups and downs.  It was all so surreal and time took on the quality of suspended animation.  It's no surprise to me that I lost sense of time.  As my counselor so aptly put it this week, "don't be surprised by your capacity for storage.  You had to put a lot of stuff away for later because of the chaotic nature of your life at that time."  Well, I've been doing a good deal of unpacking lately.  All of the sudden there seem to be a lot of packages showing up on my front door. 

I don't think it's any coincidence that it is happening as I am rounding the bend into the anniversary of Phil's death.  The routine of school, the approaching holidays, the heat and humidity - everything conjures up memories of those last days.  As I lit a candle the other day the scent of it instantly took me back to our rental house on Lomita.  I saw Phil in repose on our red couch, his feet swollen and propped up on pillows, in his hand the cup of "juice-water" he continually drank in those last days.   I felt the bond of the circle of friends and family gathered there with us, surrounding him with immeasurable love and care.  Those last days were time multiplied.  

Now, as I go through the stuff that's showing up for me (my storage unit so to speak) I'm increasingly anxious to get through this year of firsts.  To get it over with and start into the next year, the year after Phil died.  Yet when I pause to reflect I realize I don't want to miss one moment of the next 2 1/2 months this time around.  At this point last year I was inconsistently available for my children's needs emotionally.  Thankfully there were other wonderful adults who stood in the gap.  Now it's just us, Sally, Bennett, and Olivia day in and day out.  

In these last weeks something subtle and sweet has been slowly developing between us a midst the anguish and anger we feel ~ feelings we too quickly take out on one another.  We are all quite tired.  We are collectively ready for a change.  For our little threesome a crucial part of moving forward in change will require that I consistently be there for them as the painful and sad moments ahead intensify.  "Life is change, growth is optional."  I want to continue to show them the way through to growth and healing.  May it be so.

Lost in the Supermarket

Yesterday I found an old notebook that I used to keep track of things when I was preparing to move down here from WA.  It held lists of house repairs, donations for the Goodwill, things to save for our garage sale, crap to haul to the dump, items to give away to friends.  There was a tremendously long TO DO list in Phil’s handwriting that I had dictated to him while we were driving in the car one day.  This was followed by page after page of errands that I had run in the days and weeks leading up to our departure ~ groceries, packing lists, dentist and doctor visits, car tune ups, and friends to whom we’d need to say good-bye.  There was even a pro and con list of reasons for moving to San Diego.

And then, on one lone page, tucked among these lists, was a notation long forgotten. 

Phil – another illness?

You see, at that point Phil was already in the beginning stages of what would eventually be diagnosed as lymphoma.  But at the time his symptoms were non-specific, very uncharacteristic for lymphoma and frankly, confounding.  While packing up and making the transition to CA he and I were also trying to figure out what was going on with him.  He saw his internist, a neurologist and a specialist in Seattle.  He went to the ER in incredible pain.  The best we could come up with by the time we left was that he might be developing another autoimmune disorder.  In reality, it only took about 6 more weeks for the lymphoma to clearly declare itself.

I’ve talked about my little journals before.  How they held my notes during his illness and contained my brain when I had little to no sleep and couldn’t trust myself to remember details.  They funded each and every blog post I wrote during that terrible hard time.  They are a record of his treatment, his intense suffering, his humility and ultimately his release.  They are sacred because they contain notations like the one I found yesterday that might pull me up short, but remind me of other times and other places that were real and were different.  They show me that time passes and things do change.  More on that later. 

There is a song lyric that Phil would quote from time to time when was overwhelmed or couldn’t make a decision.  “I’m all lost in the supermarket.”  Such genius lyrics these are, from The Clash.  It became a code between us when we were at a loss, literally or figuratively.  We loved the idea of feeling lost in the "supermarket", a metaphor for our everyday life.   When you can't understand what's going on with you or in your relationships and that stops the normal flow of your days - the "shopping" as it were.

Well, Daddio, I'm all lost in the supermarket.  

I feel like this more often than I'd like to.  Suddenly it's like I can't do what I was easily doing everyday and it's because of something that's lacking in me, and those voids aren't easy to fill.  What's lacking stems from the tremendous hole in my life where you used to be.  That’s obvious of course, but I'm struggling to understand how I lost so much of myself in your death.  I have been profoundly diminished.  

I still can't bring myself to hang any pictures of Phil in the new house.  Like a bad part of town or a corner of the woods you wouldn’t be caught in after dark, I've been skirting around that area of life for the last little while.  I've given myself lots of reasons why I haven't put any up but truth be told, I've been hiding out.  It's just too painful.  There are a few scattered pictures sitting on shelves but the entire folder full of pictures that I collected for his memorial sits untouched in my fire proof safe.  And I can’t bring myself to hang our wedding picture.  It still sits in my closet, right where Trenna put it when we moved in.  One small example of all lost in the supermarket.  

Phil is gone.  Now we are three. I get up every day and lean into the future with my kids.  I'm much more easily frustrated. I lose my temper and yell more.  I pick my battles and try to do my best.  It's ridiculously hard being a single parent, being a 45 year old widow, desiring to be fabulous on occasion all the while recovering from a nuclear disaster.  I do have good days, don't get me wrong and we are making progress.  I’m getting closer but I’m also shocked by where I find myself.  I don’t judge it, but I’m shocked by how little progress I've made.  The relief of his death and the end to his suffering has now passed.  Now I'm on to a deeper grief ~ missing the healthy and vibrant man I loved and lived with all those years before.  I’m just beginning to really grieve.  It's a good, hard and very sad development.  

But I trust my journals, things do change, eventually.  They always do.

It Ain't That Hard

I heard Deepak Chopra speak many years ago when I was a PA student at Duke.  It was a silent snowy day and campus was eerily quiet.  I didn't see a soul until I entered the SRO auditorium and even then there was a subdued atmosphere, everyone whispering in hushed tones and huddled together for warmth.


The topic of his lecture is lost to me now but there is one thing that remains with me from that night.  He was talking about road rage and our hurried life style in this country; how we are always rushing to and fro, how what we are all about is more important than anyone else's business.  He challenged us to think about the person in the car that cuts us off, the car that won't let us pass, the driver that flips us the bird.  He challenged us to consider what their emergency is.  Maybe, just maybe, they are in crisis and have fewer tools in their tool box than we do.  Maybe, just maybe, they are in need of grace and we can give it to them.  Maybe, just maybe, they are going somewhere more important than we are.  Maybe, just maybe, we can exhale and let them go by us and we will be better off for having done so.  


Yesterday I was returning a video to the Red Box at 7/11 and I couldn't find a parking space in the lot.  There was a pick up truck blocking the lane and a red-faced young kid was shouting at the driver to move her ass out of the way, waving his arms and swearing a blue-streak the whole time.  The driver was so flustered in her attempts to do so that she backed up over the curb into the bushes.  As I found a spot way out of the way and walked over to the rental return I crossed by her and saw her crying.  Her passenger called out to me, "Excuse me, can you help us?"


It turns out they had been driving around for over an hour looking for a street that was several miles away.  He was overdue for dialysis and had missed his bus so his wife was driving him -- she spoke no English and he was legally blind and couldn't drive himself.  They were so far out of their element.  I rummaged around in my car, found a highlighter and wrote directions on a paper plate.  Hopefully they made it to their destination.    


I thought of Deepak. 
I thought of all the times people had stopped to help Phil and I.  
And I thought of all the times I've been disappointed by people who can't see beyond themselves.  


It's pretty simple.  As my snarky and wonderfully loving friend Anita posted yesterday on her Facebook Status: "Guide to not being an asshole: Don't be an asshole.


Love wins every time.

That Place

It's been a particularly rough few days for me. The kids are fighting more, my fuse has become short, and I wear lethargy like a lead apron.  The boxes are becoming more and more difficult to face each day.  The high of moving is gone and we are all feeling the downturn.  There is much more to it of course.  There always is.

We've made several trips back to the rental to gather up straggling items, do a final walk through, take out garbage and set aside our Amvets donation. On each visit I've remarked to myself how glad I am to be out of that place with it's crumbling pathway walls, waist high weeds, wobbly faucet, 1950's insulation and chronic smell of smoke and ash.  That place that until two months ago had no heat. That place so poorly managed.  That place where Phil died.

If you ask the kids are they going to miss that place they'll say "No" very emphatically and might even call it a slum.  I'd have to agree with them.  But our hearts are sorely hurting for having left that place all the same.  For no matter the condition of that house, it was our last home with Phil.  It was the place where we witnessed his final hours of courage and humility and the place we gathered to share our heartbreak and sorrow.  It was the place where neighbors cradled us in their collective arms and cared for us day after day after day.  From this point forward we will only move further away from that place ~ which is both good and sad.

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.

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.


  

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.

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

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

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.

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! 

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.

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.

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."

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.

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.

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. 

Relapse

If you haven't heard, the Conrad Family has been through some changes of late.  We moved to a new home over the first weekend of July and were accused by our mover-friends of being hoarders.  It was the hottest week we could have picked to do the move and I, too was kinda mortified by how much stuff we still have.  I truly did downsize when we left Washington but realized anew that our situation has changed yet again.  While we find ourselves blessed to be living in a cool old rustic 1500 sq ft house built in the 30's-50's, we're trying to fit 2800 sq feet of household into it.  Not gonna work.  So, my garage sale is turning into an Estate Sale and I'm OK with it.  Nothing like a good purge to set things right!


Our summer is well underway and Bennett is now hitting 50 mph in the batting cages and is excelling in baseball playing catcher, 2nd base and center field depending on where his arm and "leadership" are needed.  He's got a great coach and team and has stayed with the core members since early last year.  Olivia is Bennett's favorite understudy, catching well and hitting hard enough that we have to direct her away from the house.  She swims like a fish and sings all the time.  She continues to have a sweet and happy heart.  A puppy and a kitten are tops on the list for them once we get settled into our new domicile - promises made in WA and long awaited to be fulfilled.


As for Phil, I mentioned in my last blog that he is no longer in remission and we are at a crossroads concerning his treatment.  To review, during his last chemotherapy course he developed another pleural effusion and a CT scan and thoracentesis were performed.  Those results were compared to the previous CT from 9 weeks prior and showed the return of a 5 cm lymph node in his chest and pleural fluid full of cancerous lymph cells.  Fortunately however, despite some very tough days once he came home he was able to remain out of the hospital and without complications with this last course of chemo and he avoided having a blood transfusion!  It was the only time he's made it through a course without any "problems"!  Better late than never : )


It has been an intense few weeks of recovery for he and I.  We are in the midst of a major move.  There has been much to ponder.  There have been decisions to be made about what if anything to say to the kids.  Initially we had to wait until Phil was through the worst of the recovery before we could even begin to address what comes next.  Then slowly Dr. Kossman began to explain that the nature of Phil's disease has changed.  He told us to think of it as more of an ALL picture, acute lymphoblastic leukemia, the most common type of childhood leukemia.  Not only has the name changed but he will no longer be treated with the Hyper-CVAD regimen because he relapsed on it.  Initially Kossman spoke of trying various chemotherapeutic drug combinations to try to "buy some time".  Sobering words.


Then just a few days ago at our last meeting, he told us of a new FDA-approved drug specifically for relapsed T-cell lymphocytic lymphoma and ALL.  It is so new that he has no experience with it and spent the weekend reading up on the medical literature.  It is also very expensive and we are waiting to hear if our insurance company will be covering it.  We are hopeful as Phil is the perfect candidate.  We have received approval from Alvarado Hospital to treat him with it there and are happy to learn that it is an outpatient therapy given one time every week and a half!  No more 4 day stints with bad food!!


To prepare, Phil had another CT scan this week to determine what his last chemotherapy regimen accomplished.  We are hoping the 5 cm chest mass was shrunken somewhat by the chemo and we are anxious to hear about that.  His kidneys are still a bit taxed from all the medications but he is still strong enough to move some furniture around, unpack boxes and soldier on.  He is far from done fighting and we are thanking God for His incredible timing on this new drug.  We have yet to really fill the kids in on all the changes that are going on.  We figure they've seen their Dad come home from chemo, the usual tired and run down guy.  He's bounced back and is doing better, for now.  To try to explain all the nuances is more complicated than they need when everything all looks the same to them.  When things start looking different or Daddy isn't responding to the new drug then we'll have something to talk about.  As Phil says, they've had plenty of sadness and worry already.  
It's interesting though, the other day when Phil was particularly tired and napping on my sister's couch, Bennett could be overheard saying aloud to no one in particular, "I don't think Dad's in remission anymore".     
                                Our lives are, as ever, in His precious hands.