Thursday, September 22, 2016

DTSC letter

Subject line: DTSC allocation of funds for pediatric cancer cluster near SSFL

*** It is imperative that you use your name and list the cross streets and city where you live near the Santa Susana Site, otherwise your email will not make a meaningful difference ***

Dear Arezoo Campbell, Mike Vizzier, and Gideon Kracov,

My name is ( XX ), and I live on the cross-streets of (X and X)  in (X) city.

I am in support of a fund to research a pediatric cancer cluster near to the Santa Susan Field Lab. I feel the $100K you mentioned at the recent community meeting would be a good start to helping our community find the answers we want most, to make sure our kids are safe. 

We are concerned that the contaminants from the SSFL have made our children susceptible to rare cancers and other health conditions. Please help us find conclusive answers by allocating these funds and by creating a research team who will help our community determine the safety of our environment.

*** Please write a few sentences about your child's cancer***

2. If your child has/had cancer while living in the area:
  • what type, be specific
  • year they were diagnosed 
  • where you live(d) when diagnosed
  • include statistics on how many cases of your child's cancer are diagnosed yearly in the US
  • if your child's cancer is because of a hereditary condition or if the cause is unknown

***If your child does not have cancer, please explain why the research matters to you.***
  
Very Sincerely,

Your Name (X X)
Phone (xxx) xxx-xxxx)
Email (xxxxxxx@xxxxx.com)
Team Page/Fundraising page (www.xxxxx.com)  if your child has cancer or medical issue only

Please send a copy of your email to the three email addresses:
Gideon.Kracov@dtsc.ca.gov
Mike.Vizzier@dtsc.ca.gov
Arezoo.Campbell@dtsc.ca.gov

Monday, September 19, 2016

A Golden Lining

I used to think I could be separate from others and still be connected to God. I now reject completely the idea that Christians can be separate and please God. And standing next to each other in church does not mean I am connected. It is entirely possible to be surrounded by people and still be alone. I have lived much of my life that way. I reject the philosophy that asserts that God cares about our goodness, our strength, our faithfulness and that it's enough for us to be "good" for him.

This is an excerpt from the novel I'm trying to write:

I think Christians act according how they imagine heaven to be. I think many Christians have come to believe that heaven will be a blend of country club and orchestra concert. They’re highest goal is to have clean hands, properly clasped, and small appetites for adventure. That is not what I imagine heaven to be. I believe heaven will be like a playground. There will be order, as the playground has rules for sharing and no shoving or hitting. But the playground is also full of loudness and laughter and messes. One child might skin their knee but kisses from our father will set us running again. With encouragement from our Father we will find new courage to conquer the big slide . Two children might fight over a toy but with the guidance of our Father we will learn to be like him, full of goodness and grace. That is why I don’t bother with my buttons or my tie being straight. My heaven has no dinner jackets to practice for.

Yesterday in Church I struggled to worship because many songs we sing are about us feeling happy in God's presence. I continue to hurt in his presence and I no longer see my identity as "strong" or "good." But during worship I heard God tell me that he had allowed me to be broken because that was the only way to break off my false self. The real me was so hidden that even I didn't know it existed, but God did. And he wouldn't settle to love my false self. He wanted the real me- the broken, hurting, bleeding real me. And he allowed me to break so the real me could be found, for my sake, and for his sake of being able to love me fully.  

My identity was built on the foundation that God is good (my definition of good) and that I am strong (my definition of strong). As many of you know from my last post, those two foundations were shaken to the core. So shaken that I thought there was nothing left but empty hopelessness. Because my identity was "strong,"I never allowed myself to acknowledge  emotional pain. I was in denial. I hid my pain so deeply that I often didn't know it existed. And the little I did know of, I never let it out. I kept up appearances and kept people at an arm's length, even Chad. I even kept myself at arm's length. The pain was an area no one, not God, not even myself was allowed into.

I recently heard a sermon from Freedom church, and the pastor said that God does give us more than we can handle. He does that because it forces us to be a community, to rely on each other, and in that community we experience a unique aspect of God. I can say that this is true. It is very hard for me as friendships and openness are difficult for me, but I have felt God's love through others. I have experienced his acceptance because of others. I don't feel alone when surrounded by people...I feel known.

I have since talked with several close friends and with Chad and explained an even deeper version of my pain. All of it. All the pain, the hurt, the fears. I like to have answers and I like to be in control of myself. Being that open took away all my answers and control and left me vulnerable and I was not rejected. In fact, the acceptance and patience and love I received was so overwhelming that my hopelessness is melting. I am still in a lot of pain but I am no longer afraid of facing it alone.

The acceptance of others has allowed me to attribute it towards God. I now know he accepts me as broken. This is how community is meant to work. This is why we were called to be the body of Christ, hopelessly intertwined and dependent on each other.

I continue to struggle daily, but I am no longer afraid. I am no longer alone.

Saturday, September 10, 2016

Personal Pain

Hurting hurts worse than I had imagined.

It's made me into a not very nice person. I'm mad at everyone who can't understand my pain. I am selfish and don't really listen when others tell me their stories. I snap at Chad for any mistake. I judge those on the "outside" for the judging I imagine they're doing of me. I doubt myself. I doubt God.

It's not attractive being broken.

I've judged so many broken people in my life. Until now, I've only experienced pain that could be denied or covered up or passed with time. Then Grace got cancer and those methods no longer work. I've never had to live without a safety net before. God had always been my safety net, but now I realize that it was an illusion. In my belief, that net was always going to catch me the way I wanted to be caught. It would never allow me to hurt. God is my hope, but his safety net looks a lot less safe because I now know it obeys his directions and not mine. The potential for death is real. And that frightens me. God is good, but he is not tame.

I realize now I treated the emotional pain of the last two years like a lazy gardener. I would snap off the blossoms and tear out the leaves and imagine I had solved the problem. But pain is like a weed. You can kill everything that's seen on the surface, but unless you dig down into the soil and tear out all the roots, the weed will return again and again. But digging hurts and is messy. But the pain keeps returning and so I am ready to learn how to dig.

I'm starting a new step study at CR which is supposed to go more deeply into recovery. That's a good thing because I've since realized that my coping mechanisms were not healthy, and now I'm not in denial, I feel EVERYTHING and have no skills to cope with it. Every minute that isn't filled with activities is a minute that hurts me.

I'm also going back to therapy and will consider going onto antidepressants if she recommends them. I figure it's that or alcoholism*. Something has to change. A heart can only hurt this intensely for so long.

I wish I could say God was my relief. I want him to be. The problem is that I'm currently avoiding him whenever possible. He is the thing I am most afraid of and angry at. Also I'm a people pleaser (aka co-dependent) and so confrontation is hard for me. Confronting God sounds like the worst thing in the universe right now. So I return to denial like a dog returns to its vomit, though it hasn't reduced my heart ache.

Until now I always assumed, with self-will and determination, anyone was capable of pulling themselves up by their bootstraps...in the name and power of Jesus, amen. Now I see that there are some forms of broken that we can not come through unscathed no matter how much we want to. It's not always a matter of will or strength.

The comfort is that I do know God is faithful. That's why I'm not afraid to be this way. I know his faithfulness will come through and save me. God is faithful and I am not required to carry the burden of being "faithful" or "victorious". He can handle my anger and fears and doubts. Though I am afraid of him, I am unafraid of him turning away from me. I know he will not desert me in my pain. I know he is not put off by my ugliness.

I am praying that through this journey I will find God for who he really is, and not as I've wanted him to be. That I will come through this a whole woman, full of compassion and hope. I know God will lead me there. I am hurting, but I am not afraid.

"Morning by morning new mercies I see.
All I have needed, thy hand has provided.
Great is thy faithfulness, Lord unto me."

*disclaimer: the alcoholism reference is me being sarcastic. I would never choose  a horrific disease like alcoholism that would destroy myself and my marriage and my kids. 

Tuesday, August 30, 2016

Too Busy

It's no secret. I get too busy on purpose without realizing that I'm doing it on purpose. Even though I've recently quit freelancing (mostly) and tried to simplify life, it was today that I realized I still keep too busy. Granted, I think my ADD brain thrives on having many projects that interest me. But having been sick these last six days with the flu, with little capacity to do anything, I felt a backlog of emotional pain mounting. My anxiety was fighting for dominance, my thoughts full of self doubt and fear.

Finally I put on worship music while cooking to keep my thoughts under control. That's when I realized that even though I've been trying to simplify, I've kept my mind too busy. Even when I pee I look at Facebook. At night I've been watching movies, reading books, trying to write books...anything except take time to think. Because thinking hurts. I need to fill my free space with prayer and worship and thanksgiving. Otherwise I keep busy to avoid the pain and fear.

Our little friend Hazel relapsed recently, relapsed with a very aggressive and dangerous form of cancer that nearly took her life the first time. Her mother has become a very dear friend to me. After she relapsed it took days for me to whisper the words to myself, I'm scared. It's no wonder I've been busier than ever these last few weeks.

Already I had been trying to cover up the pain I'd been feeling from my own kids. School has been hard on both kids. Somehow it's brought up all the pain of what cancer did to our family.


Grace is struggling, though she loves school too. She talks too much during class. Granted...she's a talker. But I think she's been so hungry for friendships that she's realized that acting out in class gets her the respect of her classmates and she'll settle for that, though she's devastated when she gets in trouble. She assumes correction means she's a bad kid. I've also noticed a severe upswing in disobedience at home ever since Hazel relapsed. Hazel is the first friend to relapse now that Grace is old enough to understand. With Bailey she didn't know it was relapse. She only knew Bailey died.

Luke is having separation anxiety. When he gets home from school his favorite game is cuddling in his tent under his bed. He wants to be on my lap, in my arms, playing closely all day long. We found him asleep on the couch last week, the morning that Grace and I had to go to an early GI appointment at CHLA. Just like he used to when she was in treatment. He cries almost every day before school though he loves it and loves his teacher.

A week ago I was reading, Hand, Hand, Finger, Thumb to the kids at bedtime. On one page Jack, the big monkey, and Jake, the little monkey, "shake hands, shake hands, shake, shake, shake." Then the monkeys say "Goodbye Jake, Goodbye Jack, dum-ditty, dum-ditty, whack, whack, whack." Jack then exits to the left and Jake exits to the right.

Luke was really upset. "Why did the big monkey leave the little monkey all alone? Who is going to take care of the little monkey? He can't take care of himself, he can't be alone by himself."

How do we heal from that?

Mostly I've been trying to be strong, because that's how I've always coped. Today I remembered the first step in CR and admitted that I am powerless and my life has become unmanageable. And with that I was finally able to ask God to be strong for me so I could take time to just be broken. That's what this blog is about tonight. I needed quiet time to sit and think and to hurt.

"...accepting hardships as the pathway to peace; taking, as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to His will..."

I can't accept His will if I am being "strong," because for me, strong is denial. I desire to be strong instead trusting God who has allowed pain in my life. Life is so chaotic and out of control that I am in denial to assume I can be stronger than it. That I can control it. That I can pretend it doesn't hurt. That is all denial. And keeping my hands and head busy is also denial. Just because I can't feel it, doesn't mean it isn't happening.

And just because I choose to stop being in denial doesn't mean I've stopped. I've built up this coping mechanism for so many years that I can't just shut it off. I fall back into denial as quickly as I've come out, dozens of times, even as I write this one blog.

"I admitted I was powerless over my addictions and compulsive behaviors, that my life had become unmanageable..."

I'm even powerless to stop being in denial. I am powerless. I say that over and over during the day. It's amazing how it comforts me to not have to be strong. Mostly because I know step two follows, "I came to believe that a power greater than ourselves could restore us to sanity," and step three, "I made a decision to turn my life and will over to the care of God."






Tuesday, July 12, 2016

New Identity

For better or worse, this blog has become a journal for me.

Tonight's Celebrate Recovery was tough. We watched a video testimony of a mother daughter team, both recovering addicts, both made major mistakes as moms. The mom talked about her own pride issues and how it kept her from drawing close to God. The daughter spoke about her unforgiveness towards herself and how that kept her from recovery.

I was surprised by the emotional explosion their testimonies set off in my heart, I really wasn't prepared for it. When we went to small group time, I ugly cried, even though I couldn't really understand exactly what hurt so badly.

I feel so much unforgiveness towards myself. I hate that I delayed Grace's diagnosis by not catching her bruises for weeks after the cancer started. I feel I let her hurt because I didn't have the guts to stand up to the ER doctors and demand more tests.  I can't seem to shake the feeling that I could have done something to stop it. I feel I broke promises that I made to protect my kids no matter what.

I can't seem to allow God's forgiveness to heal me because I don't want to be forgiven, not by God, not by me.

If I allow myself to feel guilty over her cancer than I can continue to pretend that I caused it. Obviously I didn't, but by pretending I did, I retain some feeling of control. The only alternative is to admit I have absolutely no control over cancer, over Grace's life, over my life. I think only people whose lives have been completely out of control can understand what I'm trying to say. It's terrifying. It requires total trust in God or total despair. There is no middle ground.

I didn't really realize that I was trying to keep control by not forgiving myself until tonight. I didn't realize it was pride. I was trying to be God, by trying to control Grace's cancer and also by deciding that his forgiveness wasn't sufficient.

I also realized that I have made an identity for myself that is in opposition to God. Since I was very young I had this image of a super-me. I saw myself as capable of withstanding great pain, overcoming all obstacles, a survivor, a healer, a savior...and for the areas I lacked, I condemned myself. This is the most tidy and neat form of pride that exists.

The pain I've been keeping inside has been creeping out. Lately I've been angry all the time, hurrying the kids for no reason, making stupid tasks important, and totally exhausted. Which makes me condemn myself more. I can no longer have this identity if I am to be healed by God.

I loved what "Ellen" said tonight at CR, 'If I had known back then what I know now, then I wouldn't have done it. So I can't judge myself for it, I have to forgive myself. And just say 'Jesus help.'"

In order to forgive myself I have to first see myself as someone who didn't know it all back then. I have to admit I never was the super-me and then I have to forgive and accept that un-super-me. Just the way Jesus has forgiven me. I have to see myself as Jesus sees me, totally broken, totally forgiven, totally redeemed.

I have to accept that I have no control over life, death, or cancer. I have to rely on Jesus, and trust that He is good, even when life is devastating. I have to accept his forgiveness and accept that he loves me as I am, not as I should be.

I have to discover myself, to be the just-me-not-super-but-not-condemned who can make mistakes and forgive herself.

I think I will.

Monday, June 13, 2016

Faking It


Life is busy. I realized that I've been keeping it that way on purpose...or subconsciously on purpose. But sometimes the real thoughts and emotions slip out at the most unexpected times.

Today at the park I was talking with two mamma friends and we were discussing our lack of time for reading the Bible and prayer. I mentioned that I am still struggling with forgiving God for what happened to Grace. That's not something I normally say out loud. Actually, its not even something I allow myself to think about. But once I said it out loud I realized that is exactly how I feel. And I feel so guilty for feeling that way, I avoid God even more.

I really appreciated my friend's advice. She said it's ok to feel that way. She said that God has made our relationship with him mirror marriage. She said that when we have a bad day with our spouse, we don't quit. When we have a difficult week, we stay in the marriage. Even if it's weeks or even a year of disconnect, we continue doing the right things, and in time (if there aren't any hidden/serious issues) the marriage will work itself out. After 14 years of being married, I know this advice is true.

I don't hear God when I pray. I don't feel him when I worship. I am uninspired by his Word. But I'm still here, doing the right things, waiting for the relationship to work itself out. I think that's the more true definition of love. Love isn't just what we feel like doing. Love is what we do when we don't feel anything.

And I think that's faith too. Trusting God when there are no feelings.


Today I was thinking a lot about cancer as we were driving to a Michael Hoefflin mini-golf event. I was thinking about Grace's cancer free carnival. I was wondering why I decided to have it now instead of next year. In all honesty, I think about the possibility of Grace relapsing almost every day. I want to celebrate her cancer free, but I don't have the feelings of excitement or even thankfulness.

Mostly apprehension.

I think I wanted to have the party now, because if she relapsed, then we wouldn't be able to have the party for a long time. I wanted to make sure it happened in case anything bad happened. I am so terrified of the chance of relapse that I refuse to think about it. It sits like a quietly simmering pot, hot enough to scald, but not hot enough to boil over. When it simmers, it can sit there for a long time and be ignored. That's what I've been doing. Feeling the heat, but refusing to figure out the real problem.

The real problem is I worry that if Grace relapsed, that I wouldn't be strong enough to handle it a second time. That my faith would give out. I don't have a surplus saved up should we go through it again, I'm still trying to replenish from before.

On my drive today I was listening to worship music and it was like God picked the playlist. All the songs were about how strong He is. I realized that I was fearful that my faith wouldn't be strong enough a second time...but in reality, it never was. It was His strength, his faithfulness, that got us through the first time. It had very little to do with me from the start.

That's where the joy of salvation springs from- from the realization that we can do nothing for ourselves spiritually, and that God has done everything for us because of his great love for us.

I don't think I will every feel totally at ease again in my life until all cancer is cured. But even then death will find us another way. But God has rescued us from death. I don't have to fear cancer coming back because the worst that could happen is death, and he has overcome it. And it won't be my strength or faith that will earn that rescue, it's what Jesus did on the cross.

It's the most basic Christian belief, but somehow the truth of it has escaped me for some time. Today that truth turned off the simmering pot, and instead of feeling apprehension, I felt gratitude. Peace. Instead of feeling guilty for not "feeling" faithful, I will accept that he accepts me in this place of quiet obedience.




Tuesday, April 5, 2016

What to do when your child gets angry at you?



Another cancer mama has asked me advice on "what to do when your child gets angry at you because they have cancer."

Grace was diagnosed with high-risk PH+ ALL two weeks after her fourth birthday. Because she was so young I became the cancer to Grace. "Why are you letting them do this to me mommy?" wasn't a question I could adequately answer for her. 

It was mommy who held her down to be poked with needles.  It was mommy who gave her the medicine. It was mommy who made her hold still for the doctor. It was mommy who said no to the friend's party, no to preschool, no to the park. 99.9% of the time, it was me, in Grace's eyes, who forced the effects of cancer on her.

Children aren't old enough to realize that the only other option would be death. Death is an abstract concept for kids and therefore they have no gratitude for you working so hard to keep them alive. They just see the limits and pain. And they see you doing it to them. Grace needed me, and she knew that, but she also resented me for that help. She was so angry. So angry. And she directed all her wrath at me. Not only was I exhausted but I had a kid furious at me for taking care of her.

We found a few solutions that helped immediately.
  • Give pre-approved choices whenever possible. "Do you want to have your ears checked first, or your throat checked first?" I remember one time Gracie blatantly refusing to lie down so the doctor could examine her tummy. "Will you put your head on the left or the right?" I asked her. "The right!" She shouted, triumphant to have control. Of course it was control I handed to her.  Cancer kids are stripped of almost all their choices. Any pre-approved options you can give them will help them feel like they retain some of their power. Word of caution: don't give open ended questions like "would you like to take a bath" unless you can live with their choice. Two options tends to be best.
  • Keep the family rules. I remember one of the first things we were taught when Grace was diagnosed was to continue to hold her accountable to our family's rules. We didn't listen. We eased up on the rules and the consequences. To our surprise, Grace got even angrier. The advice was right. 
    • When kids are in control of their parents they resent the responsibility, even as they fight tooth and nail to get it. The world is a scary place for them. If we are weaker than our kids how can we protect them from the even scarier and bigger world? They need us to be strong so they know we can protect them, guide them, and love despite their outbursts.
    • Also, kids are super smart, even the young ones. If they see you suddenly stop giving them consequences then they figure they must really be sick, really weak, no longer capable of doing the right thing. By holding them to the basic family rules like no hitting, kind words, bedtimes (as much as possible), sharing, it helps them feel strong. It’s also one less change in their rapidly changing world. Kids feel proud when they do the right thing. Don’t take away that opportunity.
    • Obviously you can't give spankings to cancer kids but there are many, much more effective consequences available, and I'd recommend Love and Logic for ideas on that.
  • Find new activities for them to excel at. Grace used to love riding her scooter and playing on the playground. For a while those activities were either too difficult or too dangerous. So we started baking and arts and crafts instead. She really enjoyed those activities and it kept her mind off what she couldn't do.
  • Play Therapy. When we could, we had her dolls act out what she was feeling with life. I'd play the doctor or nurse and her dolls could ask them questions she was too afraid to ask about herself. I also played with her a LOT more. Since she didn't feel well enough to self entertain and couldn't play with friends, I became her most constant playmate. That was hard for me but it built up intimacy. We noticed that the intimate playtime became really special to both of our kids when they were stressed out.
These are some tips that we've learned along the way.

  • "I can tell/hear/feel/see you feel ___________, but it's not ok to ___________. You have choices to calm down and then we can find a solution." 
    • First, it recognizes the feelings. Kids feel safe when they're allowed to feel around you. Even if they are doing it "wrong," help them put words to the tantrum/screaming/hitting/etc and it helps bridge that communication gap. It helps them know you're on their side and willing to help.
    • It puts limits on bad behavior. "...it's not ok to scream at me/talk rudely to me/hit me/ignore me..." are all acceptable limits. 
    • It teaches the child they can control their emotions. Choices can include: getting hugs, squeezing a toy, yelling in a pre-approved place, jumping jacks, taking deep breaths, etc. 
    • It allows for fair consequences. If a child does not choose to calm down and work out the problem then you can have consequences: timeout in pre-approved tantrum spot (1 minute per year old), having an "energy-drain," or loss of TV or iPad time. We've found these to be pretty effective.
  • "I know." This one is a simpler version of the above, helpful when you don' have time to think. "I hate you for making me do this mom." "I know." "I don't want a poke." "I know." It's an empathetic reply that doesn't get into an argument. "I want to go home." "I know." It's a good statement for those days when you're too tired to remember your name but it helps your kid know that you're on their side. 
  • Redirect their anger. I remember the first time I told Grace that I hate cancer too. She was shocked. "I hate cancer and I am angry that it hurts you," I told her. It put us on the same team. "But we have to get you healthy, and this is how we do it and we can be brave together," I told her. Help them redirect their anger to what the real problem is. I remember one time Grace wanted the nurse and I to scream with her when she got an NG tube she hated. We did, we yelled so loud! And we were on her team, hating her cancer with her that day.
  • When in doubt, structure! Structure! Structure! We learned this from Grace's therapist. Little kids strive on structure. They need to know what happened yesterday, what happens today, what’s going to happen tomorrow. Anything you can do to help them feel like they know what to expect in their lives will help lessen the stress. When Grace was first diagnosed we thought it'd be better to let the hospital trips be a surprise so she wouldn't be stressed out in advance. The older she got the more we let her know in advance and the more she would ask. She wanted to know how many days until the hospital, what was happening today, what was happening tomorrow. It helped her feel secure knowing what was coming and we could practice in advance to be brave. And by being honest with her, even letting her know when she'd get pokes, it helped her know I was on her team.
Even with all these ideas in practice we had some good days and bad days. I think what's most important to remember is to hold onto the good moments and let go of the bad. It's a beautiful thing that we got to tell Grace every morning, "God has forgiven us and given us new mercies today." We started fresh. 

Most of all, remember that your child does love you. It's the cancer they hate. Even if they can't express it, they love you and need you. By showing up every morning you are being the parent they need you to be. It's a hard job being mom, but you should be proud of yourself.