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.

   

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

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.

With and Without You

Phil is "treading water" as Dr. Kossman likes to say but a better description might be to say he's "climbing the walls".  We both are in our own way - he's in his uncomfortable hospital bed, just biding his time waiting to be hale enough to undergo more testing and have an immune system capable of sustaining him at home.  I'm at home and the hospital, caught between two masters, caring for him and the kids and trying to balance both while not losing myself, my sanity or my temper.  


Parenthood is definitely not for sissies and single parenting, well, my hat goes off to you folks and then some.  Add in a routine migraine, any one of a myriad of emotions from the kids, some generalized grief and don't forget, we've got 2 weeks off for Spring Break!  I am actually really looking forward to the downtime with the kids, it's just that close quarters and free, unstructured time can get dicey.  I've got lot's of plans and ideas and I'm praying and working that the family and visitors coming this way next week will make it work out.


Meanwhile, back to our main saga.  Phil continues to receive RBCs and platelets, ride the roller coaster of GI complaints and wait ever so patiently for his bone marrow to begin manufacturing WBCs again.  Each day seems to creep by with a mini-adventure of some sort.  We've had some nice visits with friends, the kids have had extended visits to watch movies, do homework at the corner office table and do their most favorite thing of all -- get junk food out of the vending machine down by the staff lounge.  Phil is going on almost 2 weeks in the hospital this time around (having barely 36 hours at home between admissions) so his highlight with the kids is hearing about the triumphs and tragedies that make up their days.  Recently Bennett ate a Sour Cream and Onion flavored cricket and some meal worms at the San Diego Zoo and Olivia has 2 new loose teeth and has graduated to reading to the H level readers.  And it was this week that Bennett verbalized his deepest fears and hurts to us.  So painful as parents and yet, we are so thankful he did.


In more deep and painful ways than I can express it's a crucible to parent and be a wife and lead a family while a husband has cancer.  No one has it easy.  It is hard and painful to be 9 years old and able to comprehend and imagine what it could be like to have your dad die.  It is hard and sad to be 6 years old and have a mommy who is often too tired to play like she used to.  And it is hardest of all to be Phil, sitting in the hospital day after day after day after day just waiting for his body to make WBCs so he can get on with the next thing, knowing it's not the last thing.  And knowing that we're here feeling all this, for him, with him, without him.

It is What It Is

We're home now, having been discharged on Wednesday after receiving Dr. Mansfield's blessing that Phil had been given a sufficient amount of IV antibiotics and Dr. Kossman felt his blood counts were returning to normal levels.  He left on oral antibiotics and a host of other medications to tame the sinus infection while his immune system comes back online and finally conquers it once and for all (knocking on wood would be appropriate right now if you are at all superstitious). 

Normally, coming home would mean a wonderful rest from the hustle and bustle of hospital life where someone or another is always coming into Phil's room to measure, administer, deliver, or clean something.  But no.  Cancer, being the tenacious SOB that it is, has continued to flex it's muscle and is alternately pissing Phil off or exhausting him with profound nausea.  In addition to these bouts he has also been taken to the mat with sleeplessness and a ferocious fatigue that compounds with each passing day.  There has truly been no rest for the weary.  And by weary I mean: chemotherapy for 4 days followed by 9 days of the bottom totally dropping out followed by admission for pancytopenia and sepsis including sinus surgery and a 6 day stay at "Club Med".   Makes most anything I am dealing with alongside of him much more tolerable.  Not easy, but tolerable.  

I just began reading The Emperor of all Maladies: a Biography of Cancer.  It is absolutely fascinating so far and I know I will be riveted by it.  I know because it is the story of a "relentless and insidious enemy" and because it is the story I am living every day.  You might wonder why I would choose to read such a book right now.  You might wonder if I'll find it too depressing, or too difficult to handle.  On the contrary.  In taking a hard look in the mirror of reality I find nothing more affirming than seeing things exactly as they are and leaning into them.  It is what it is - and yes it SUCKS!, yes it is a RIP OFF! of epic proportions that my husband, my children's father has this most aggressive and "relentless and insidious enemy", cancer.  But to pretend otherwise or to distance myself from this process or reality would be to deny Phil and myself the opportunity and privilege of growing in intimacy with each other, our children and with God in this most heinous, desperate and yet profound situation.


Through relationships with the doctors, my close friends and family and mostly with Phil and my kids I am reaping many harvests of joy amidst this trial.  I definitely have to keep my eyes open for them sometimes but they are there.  People and relationships are an endless wellspring of love and discovery.  And when all that cancer is serving up is nausea, hair loss, fatigue and sleeplessness, well, give me the wellspring, thank you very much!   (Take me to the river, drop me in the water...)  So even though there is suffering and that is what it is a lot of the time lately, that's OK.  We signed up for the package deal with each other, with our friendships, and with God.

People travel to wonder at the height of mountains, at the huge waves of the sea, at the long courses of rivers, at the vast compass of the ocean, at the circular motion of the stars; and they pass by themselves without wondering. -- St. Augustine

Chapter 2: And So It Begins

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


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


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


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


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


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

So Proud!

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


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


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


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


Again and with more sincerity, Thank You Jesus!