Gone. She's Gone.

And not because it was God's fucking plan as some douchecanoe felt obliged to offer up in a "comforting" comment to her husband on her blog, and not so she could now find peace with Jesus.

Cancer.

Or what do I know. I'm just a bunch of matter on a planet, but I can HONESTLY say that anybody who feels obligated to comfort someone with that sentiment doesn't understand the meaning of comfort. Doesn't understand the best place for your loved one is here. Now. That you will not feel peace for some time, so you cannot fathom your loved one's peace or lack thereof.

You just want to remember how to breathe without telling yourself if it's time to exhale or inhale and why are there only four sympathy cards on this planet that you'll be receiving in duplicate, then triplicate, and then not opening at all along with the rest of the mail.

Let's skip guessing what was planned for this occasion. I think your god will probably be okay with you offering comfort and not worrying your pretty little head about the plans. Mkay? Mkay.

Deliciousness Of Rain

The pain creeps up from my toes, and I don't know why. Flu? Fibro flare? Whatever, it's unwelcome and ill-timed. 

I grab for my solutions, the things I expect will make it better, and they mask it for brief moments, and then I'm forced to admit The Ick is winning for today. 

Between its wins, I fit mine. 

Children parented, conversations of importance, boxes unpacked, and clothing sorted. Counters are wiped, and towels are folded.

Small wins. Big wins.

Date nights and gardens tended.

Love.

Dreams.

The scent of the first rain sneaks in through our window. I grab it as it passes over my tea.

A little win. 

I put these wins together into a box I keep to show to myself when I forget. I say, See! You are a winner! Look! 

I pour them out into a pile and feel them tangle between my fingers. All of the wins. The big ones fall to the bottom of the heap. The little ones are plentiful and the easiest to see. 

I vow to add more, even if I have to squeeze them in between the losses. 

My Son Is Quite Able: Riding BART

When my son was in fifth grade he was asked to leave his private school because of his disabilities. In the middle of a school day. With no warning. With no plan. Some of you will find this deplorable. Some of you will think they had a right to ask him to leave because they were a private school.

After an investigation by the Department of Justice into whether or not the school violated my son's civil rights under Title III of the American's with Disabilities Act, the case was closed without a finding.

What I do know is that today, on his first day at a school he selected, my fifteen-year-old son, is a better person for having been asked to leave that school.

Why?

That day was a turning point for our family. From the day the school sent my son home he started homeschooling.

We didn't know if it would be a temporary situation or not, but we knew it was the right thing to do for him at that time. It turned out to be the best thing we could have done to lessen the stress he was experiencing there—stress we didn't fully appreciate until he was outside the situation.

Toward the end of the lengthy and often ugly legal process with the school, before the ruling came from the DOJ, my husband was diagnosed with cancer. Since we were homeschooling, my son had the gift of spending my husband's final year of life at home with him. We had no way of knowing that was how life was going to play out, but it worked out that way, and it was a blessing. I am thankful every day that somebody perceived my son's disabilities the way they did or he would have missed that time with his father. And I am so glad his father got that time to see his son happy.

IMG 8270

Making the choice to defend our son's rights was a process that brought us closer together as a family. We regularly checked in with each other and with our son to make sure we wanted to continue the legal process. As soon as one person wanted to stop, we agreed we were done. Fortunately, the DOJ took over the case, and it was out of our hands. We never intended to pursue a civil case. Our goal was to make things right for other children for the future. We didn't see a civil case achieving that goal. Our daughter was an amazing witness when the DOJ came to our home to interview us. She was fiercely protective of the truth and her brother, which hasn't always been the case in their relationship—having a sibling with special needs can be stressful sometimes, but she wanted to make sure it was clear to the attorney just what had and had not happened since she was actually present in his classroom.

And today, on his first day of school, my son rode BART by himself. He also packed his own lunch, got himself dressed in the clothes that he washed, and ready for school on time. He attended his brand new school for seven and a half hours. He was calm. He was confident. He had a great day at school, and he can't wait to go back tomorrow.

IMG 1697 2

If you didn't know he had Tourette's, you'd be hard-pressed to tell. In fact, even the people who live with him have trouble spotting his very rare tics. As for the Asperger's, well, I just think of that as who he is. I don't even know that I'd be able to separate him from the things that would define his position on the spectrum, nor would I want to. After fifteen years of him being him, I am so accustomed to who he is and how he works, that I rather like his wiring. Our world needs him. Somebody else's oversight of his awesomeness on that day in October of his tenth year was so very clearly a lucky day for the rest of us. They missed out on having the opportunity to watch him grow and learn these past five years. We didn't.

Guess what, world: he is able! Very, very able. Don't let that slip past you this time or y'all might miss out on another five years of watching him in action.

 

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I love you, Bug. I wish Daddy were here to see this. He'd be so incredibly proud of you.

Things I Have Learned

Unless asked, don't tell your significant other what to wear. This person is, presumably, an adult. Get over your issues (yes, they're YOUR issues) with image.

Life is too short to worry about how the dishwasher is loaded. If somebody has been kind enough to load the dishwasher, say thank you.

Giving other people ultimatums rarely ends well. Same thing goes for pointing out a laundry-list of their faults. Ultimately, the only person you can fix/control/change is you. Start there and magical things will happen. The other person might still be the same, but you'll probably be a lot happier. Check the mirror, fix yourself, and move on. So. Much. Easier.

That's all the wisdom I've got for today, kids. Need to go conquer some Operation Eleanor fears and help my man build a bed.

Day 5: Operation Eleanor - Fluff Me Or Help Or Something

I suck at asking for help. I'm not good at it. It makes me incredibly uncomfortable to admit I need help, want help, or could use help with ANYTHING.

Normally, I would try to do it on my own, probably procrastinating until it was even more difficult that it need be. Today, I asked somebody for help with something that is out of my area of expertise.

FLUFF ME

What kind of help do you need? Would you be willing to ask somebody? Maybe you don't need fluffing. That's a rather off-the-beaten-path kind of need, but who am I to judge? Let's just say, this is your opportunity to reach out and hose your fears down. No, that sounds weird, too.

Fuck. I don't know. I was hard-pressed for a photo for today's post and this one was on the camera card. Don't ask.

The point is, you need to get outside of your box.

Oh, fuck it. Operation Eleanor. Just do it. With more fluffing.

 

In The Fishbowl, Looking Out: Who's The Fish?

When you choose to share your personal life in your writing there's an assumption that you've opened yourself up to a one-way critique by your audience. In some ways, that's true. My readers can form opinions about me based on what they read on my blog, pictures they see that I've posted, or things I've shared online might lead people to believe certain things about me.

The same could be said about the author of a memoir, an actor who's interviewed, or a celebrity photographed by the paparazzi.

However, bloggers have something at their disposal that an author of a memoir, an actor or a celebrity do not: blog statistics. Sounds boring, right? Not really.

Consider this scenario. I notice someone from company X has started to show an interest in reading my blog over the past few days. I can see which posts this person reads, how long she spends reading them, what she downloads, clicks out onto, what type of computer she's using, her browser type and version, her operating system, etc. If she clicks on my email link, I'll be notified. I'm also told how she found my site: Facebook, google search (what the search string was), an RSS feed, etc.

In this way, a blogger can learn a lot about their readers. It's what allows us to get to know the people who don't comment. We can use this information to mitigate situations with stalkers (as sometimes happens) or target ad campaigns (based on blog traffic). For example, there's been a huge rise in smartphone use in my stats over the past year. This means I need to be aware of my blog's formatting for mobile browsing. Stats are essential for observing both trends of individual browsers of a blog and the group's trends. I'm a keen observer of both.

In The Fishbowl Looking Out: Who's The Fish?

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Your 41st Birthday

You would have been 41 tomorrow. You loved being 6 months younger than me, so you could call me your old lady. Thought you were pretty damn funny.

Kauai 08

I'm not gonna lie. It's been a hell of a rough week. Worse than usual. I know it will pass, because it does. Every wave does, but this one feels enormous.

Peanut talks a lot lately about how unfair the world is. What she really means is how unfair it is that we lost you. I try to tell her that we were blessed with having you for the time we did, but I also tell her she's right.

It is unfair.

But life isn't about fair, unfortunately. It isn't balanced or pretty all the time. It has sharp edges. Some of it cuts you and leaves scars.

That's just a lot for a 12-year-old to understand. It isn't fair.

It's not easy being green.

Bug misses you something fierce these days. He waivers between wanting to sit in your La-z-Boy and not being able to be in the space where you died when his hurt is too raw. He's nearly as tall as me now. Your heart would melt if you saw him. Mine does.

He lights up your parents' lives, that kid. They adore him, and he still adores them just as much as he did when he was a toddler. As soon as they bring him home, they're asking when he can come back. I am so glad they have that connection to you through him and that he feels like their house is his second home.

Sun v Son

Peanut is so confident in her riding now. She's planning to show Jordan again this spring. We are blessed to have such a great facility, but even more importantly, an incredible trainer who "gets" her. Being at the ranch is a time when I see her relax, have confidence, and connect with the world.

And me? I'm lying here surrounded by a pile of your neckties. I was trying to organize some of your things into boxes for storage last night. The ties ruined me. I think I bought every single one of these ties for you. I remember attending events with you where you wore certain ties. I remember you asking me in the mornings which tie you should wear as you were getting ready for an important meeting or trip. So, I'm here in a pile of ties, covered in tears and snot, mostly me, not the ties.

His ties

Some people have suggested I make a quilt out of the ties, or a pillow, or skirt. Maybe I will. For now, I just want to curl up with them and remember you. And miss you. And cry on the eve of your 41st birthday.

I love you, and it's not fair.

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My Children Are Not Your Barbie Dolls

An early Barbie doll (and Ken doll, whose lost...Image via Wikipedia

I made a mistake. I let someone into my home thinking she was a friend. I let her become part of our lives thinking she cared about our family, and I was wrong.

As a parent, we make mistakes. The important part is owning them, admitting to them, and making it extraordinarily clear to our children that we own those mistakes.

The second part is stopping the mistake in its tracks. As soon as I knew what was happening, it stopped. The liar and manipulator was out of our lives, but my children had stories they needed to tell me.

So, I kept listening.

That’s what we do as parents. We keep listening, because we understand that children need us to listen. They don’t need us to manipulate them. They are not toys. They are not trophies. We don’t parade them around because they make us look good. They are individuals.

So, we listen.

And, when they tell us that someone has told them things that are false, told them things we don’t agree with, and told them to keep secrets from us, we have work to do as parents.

Children are not Barbie dolls. They are real people, with real emotions, and real opinions, and they need to be respected.

However, they are also children. In this case, they are children with a parent who still makes the decisions about teaching them what I believe is right and wrong. That choice does not get to be made by someone who thinks children are Barbie dolls. If she wants to share her views on drugs with children, she should have some kids of her own (or maybe not). My kids will be raised by me (far away from her influence, from now on), thank you very much.

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BlogHer '10: Ready Or Not, Here I Come

It’s that time of year. Oh, yes it is. I’ve been fashioning tutus for the 5K. Tina, Jenny and I are going to be smokin’ hawt for the Tutus for Tanner/BlogHer 5K we’ll be walking/running in NYC.

IMG_6330 But, a bigger part of BlogHer ‘10, especially this year, will be seeing the people who’ve been such a huge part of my life this past year. Holy hell. Y’all have been the shit! I wish there were twenty of me to do all of the hugging I want to do when I get to New York. (As an aside, I suck butt at remembering names with faces or even just the names. So, please don’t take it personally if I look at you like a wall-eyed freak when you tell me who you are. I do the same thing to people I’ve known for ten years. Seriously.)

The BlogHer community continues to be a huge source of support for me and my family. Devra Renner’s piece on BlogHer today was just another example of how BlogHer has been a part of my life this year. While she talks in the article about me being an inspiration, the greater message is the one I want people to take away—we need to talk about death. We need to make it part of our culture in the same way that we talk about birth. It doesn’t have to be taboo. Death happens. It doesn’t have to be shoved in the corner.

Now, if you’ll excuse me, I have a unicorn horn to pack.

@califmom and the @go_girl

(But, I’m totally leaving that sack of a top at home. Who the hell let me wear that?)

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Legacy

Thurston Howell or Bob? You make the call.Image by califmom via Flickr

An email arrived in my inbox last Friday, just after 11pm. It was from a woman I’d never met, a name I didn’t recognize, from a state I’d never visited. It was about how she knew my husband. How she had met him online fifteen years ago in an online game they played. How much he loved me. How he had helped her meet her own husband through that game. It was about what a great friend he was to her, how caring he was.

I cried. Again. Another story. I have an every-growing collection of them that becomes overwhelming at times.

At lunch Monday, as Bob’s mother and I were talking, she said she was struggling with some of the ugliness of what’s been left behind in the wake of his death. So, I told her a few of the stories. “See,” I said. “you raised an amazing son who made a positive impact on so many lives. He touched thousands of people. Not a week goes by that I don’t hear from somebody about how he made a difference in their life.”

And those are just the people I hear from directly. There are also all of the indirect ways people show how Bob impacted them--in how they are living their own lives—changes they’ve made in the way they live, the way they treat each other, charitable causes they’ve taken on in his name, and even simple things like taking time to smell the proverbial roses.

It’s made me think hard about what my legacy will be; who will call when I’m gone, send an email late on a Friday night, call my kids, bring meals, spend the night to keep my family company, and make sure they’re okay long after the sod has been placed over the grave. Will my kindergarten teacher send a card?

What about you?

Who will come to your funeral?

Who will lose sleep over giving your eulogy?

Who will tell your stories?

Who will support your spouse in her time of need?

Will a crowd gather at the funeral reception and discover you were everyone's best friend?

Will there be kids who wished you'd been their father?

What will your life have been about?

What will your legacy be?

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The Rituals

Peanut on the beach

Image by califmom via Flickr

As I was lying in bed next to my daughter, waiting for her to fall asleep, I thought about the things she does throughout the day that help her cope with losing her father. 

The moment she wakes, she reaches for his Packers hat, pulling it snugly onto her head, even on 90-degree days. It comes off only to shower, put on her horseback riding helmet, the occasional washing, or to sleep, when it’s placed atop an Ugly Doll that also belonged to Bob.

Each day, she picks out one of his shirts to wear. Her gazelle-like legs poke out from beneath one of his favorite t-shirts, most often emblazoned with images highly inappropriate for a twelve-year-old girl, but I wouldn’t think of stopping her from wearing them. It’s made all the more ironic because she’s the kind of kid that is offended by foul language and points out inappropriate “content” at every opportunity. Yet, there she is, traipsing around in a bright green shirt with an airplane on the front that’s dropping F-bombs. 

God, I love her.

Almost daily she plays the songs from his funeral slideshow—the one’s we each selected—Pearl Jam’s Just Breathe (my choice), Modest Mouse’s Float On (her brother’s), and her selection, Nickelback’s If Today Was Your Last Day.

I hate Nickelback, but we listen to it anyway. My daughter wears a Nickelback t-shirt as part of her weekly wardrobe. Why? Because it’s the one and only concert she ever attended, and her dad took her. He loved her so much he took her to see Nickelback.

That’s a lot of love, people.

These little things she does keep her connected to her memories of her dad. I fully understand that and know that she will need to do some of these things for a little while and some of them for a long while.

When Bob first died, I took the sheet from the hospital bed in our room that he’d been lying on, rolled it up and stuck it in my pillowcase where it remained for about a month. It made a big uncomfortable lump in my pillow that I didn't even notice in the beginning. I just needed it there. 

For a long time, I slept with the Ugly Doll he gave me for Christmas. I still don’t sleep on his side of the bed. In the beginning, I kept my wedding ring on, then I moved it to my right hand, and then I took it off. I wore his wedding ring for a while. Now I don't.

I wear a butterfly necklace that reminds me of the butterfly I found the day of his funeral. I keep the Fuck Cancer poster in my bedroom where I can see the faces of the people who have carried us through this and continue to carry us through.

Rituals.

They keep us connected to the person who’s gone, but they also help us move on with living. They’re the stuff that holds us up until we can carry ourselves.

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What If?

Do you spend your life asking yourself “What if?”

What if I had gone to that Ivy League university?

What if we had more money?

What if I had told her I was sorry?

What if we had a bigger house?

What if we had another night together?

What if I hadn’t lost my job?

What if

The problem with “what if?” is that it often faces the wrong direction. It’s turned around backwards and filled with regrets. We can’t do anything about life in that direction, except turn the fuck around and go the other way.

What is.

That’s where we live.

We learn to love who we are, what we have, appreciate the world when we spend a minute or two with “what is.” Of course, it can also suck. Sometimes, the present hurts, but that’s alright, because the present has a friend who’s a bit of a party animal.

What next?

That’s what keeps me going. The world of possibilities. I don’t have to be locked into my past or my present. I can focus on what my future holds. So far, I like what I see.  

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More Than Shoes And Dresses: Time To Pay It Forward

Bob and I had this thing. We didn’t mind sharing what we had. If we could help someone or make someone’s life better, we’d do it. You didn’t have to ask; it’s just what we did. We weren’t rich, we didn’t have a lot to give, but the little we had, when we had it, we were more than happy to share. Sometimes we’d just look at each other and know it was the right time to give. Sometimes the other person would do it without asking. We were never upset with each other about it. Not once. We never expected to be paid back by the person we helped. That’s not why you give.

Since we’ve been talking about red shoes and red dresses, it’s fitting that I’m going to talk now about a red car.

IMG_4435 It’s not a perfect car. It needs work. Sometimes it runs. More often it doesn’t. But, it’s a fun car, a red car, a car that was born the same year as me.

Bob and I decided before he died that the car would go to someone special in our lives. I’ve talked about her here this week. Her life’s been a bit of a piece of shit, especially this past year. She deserves this red car a whole lot.

So, today, that’s what happened. We had our version of the Make-a-Wish Foundation…for people over the age of 18 who still have wishes.

Even though we had to push it a good part of the way home, my girl has her red car. I can’t wait to see her driving it around town, using the actual gas pedal and stuff. (Thanks for the push, Jack!)

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Living, Because I Didn't Die

No matter how much I wanted to climb into the grave with my husband’s ashes, I didn’t. Why? Because he died. NOT ME. I may have to remind myself of that some days, but it’s the reality of the situation. He left this planet. And, if you’re reading this, you didn’t leave it, either. So, let’s get to the business of living, shall we?

First off, I got to the business of putting some plants into those raised beds so that we’d have some life growing in there, and some FOOD. My trusty garden adviser and friend, Karyn, and I planted a truckload of varieties of tomatoes, onions, squash, strawberries, pumpkins, cucumbers, zucchini, beans, peas, corn,  and melons, and will be planting potatoes when they arrive, a plethora o’ herbs into containers, three kinds of berries, and possibly an espaliered fruit tree that grows four types of stone fruits.

Gradfather Memorial Garden 

Then, I headed out to do a little more living with some longtime friends and toast to Bob. Don Julio did not let us down. He’s a good man, that D.J. Lots of laughing, a little drinking, and good Mexican food—just what’s needed for living.

IMG_4209 The kids did a little living, too—time with friends and family, movies, BBQs, and Weird Al. (Yes, Weird Al is still keeping his pimp-hand strong.)

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The Only Grief I Own Is My Own

GriefI lost people close to me before I lost my husband. I’ve lost close friends. I’ve lost grandparents. I’ve lost friends so dear to me I thought my world had stopped. But until now, I didn’t know what it was like to have other people look to me to be the person responsible for their grief, the person responsible for doling out pieces of another person for them to hold onto, the person controlling access to their love for him, their memories of him, their unresolved issues or regrets.

The problem with looking to someone else--the widow, the parent, the sibling, whomever--of the person you’re grieving for, is that they can’t facilitate your grief because that person is grieving, too.

It’s normal to feel angry and want to blame someone or lash out, but directing that anger and blame at the people who loved the person you lost isn’t going to bring that person back and it’s just going to damage the relationships you have left with the living. It isn’t going to make you feel better. It isn’t going to help you heal. It isn’t honoring the memory of your loved one to attack each other.

I feel safe in saying that relying on a widow to do anything short of wake up each day is insane. I can’t remember if I shampooed my hair on the rare occasion I remember to shower. I go where people take me. Any appointments are made for me by the people who need me to sign the papers, and they come to me, for the most part. I only know what day of the week it is if I check my phone and I don’t remember five minutes after I look. To say I am in a fog would be an understatement.

My priorities are narrow in focus and animal in nature. I need to keep a roof over my family’s head, keep my children and myself fed and clothed in some fashion, and make sure the three of us are safe. Anything beyond that is icing on the cake right now and most of it is being provided by people who accept us as we are, fog and all, warts and all, unshampooed hair and all.

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Finding The Butterfly

I am the kind of person who is most comfortable when she’s cloaked with sentimental objects. My house is filled with things that belonged to my ancestors, and I use these things every day because they give me comfort and a connection to my past. They give me strength.

The reason I wore a bright turquoise blouse the day of my husband’s funeral was so that I could wear a necklace my husband had given me for Christmas. It is a Superhero necklace made of bright glass beads. I wore it a lot when Bob was going through chemo. It made me feel strong. I knew I would need strength to get through that day.

On my wrist I wore a bracelet that I’d also worn to many of Bob’s chemo appointments and all of his hospital stays. When I’d sleep next to his hospital bed or sit next to his chemo chair, I’d fidget with that bracelet. It has a bead on it that says “HOPE.” My friend, Janell, gave it to me. It didn’t feel right to suddenly give up hope. Bob wouldn’t want me to stop hoping. I knew my children would be sitting with me at the funeral and they like to fidget with the beads sometimes, too. And so I wore the bracelet.

I’ve already explained the hat, but I also carried a vintage handbag. I have a collection of them I inherited from my two grandmothers. They make me feel connected to the strong women who came before me. My father’s mother was a young widow, too. Her children, my father and aunt, were just about the age of my kids when my grandmother lost her husband. I wonder if she wasn’t watching over me. I wonder if my other grandmother, the daughter of a mother whose husband left her to raise my grandmother on her own, was watching over me. It felt like they were. My matriarchs. With me.

As we got ready to leave, I was frantically trying to decide what to put into my purse. What would I need? I grabbed my lip gloss, some gum, my glasses, the typed copy of the eulogy, and my wallet. Then, I asked my friends if they thought I’d really need my wallet. “No,” was the resounding response. So, I pulled my wallet back out of the small purse. As I did, I noticed a brilliant orange monarch butterfly sticking out from the edge of my wallet.

I turned to Janell, showed her the butterfly, pressed flat and whole and asked her if she knew what the significance of a butterfly might be. I had no idea. She had no idea. We had to get going. The butterfly dropped to the floor as I tucked the wallet back into my other purse. We gathered the kids into the van with the rest of our group and left for the church.

Hope

to be continued…

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Handy Skills To Have When Your Husband Gets Cancer

Pharmacist

I've long fancied myself an amateur pharmacist. Back in the early 90s, I even bought myself a copy of the PDR at the DeAnza flea market. I always want to know why something is prescribed, how it interacts with other medications, the best way to take the medication, side effects, ways to minimize side effects...all that stuff. Who knew how handy that little hobby would become?

Now I use two iPhone apps to manage Bob's chemotherapy and medications. One is called Epocrates. It was recommended to me by a pharmacist/friend. The other is called iChemo Diary. Epocrates is much like a PDR. I can use it to look up medications Bob is prescribed/administered. It allows us to ask informed questions from our medical professionals and more than once we have been complimented on being well-educated about his treatment. As one doctor said, Bob is the one person who will always be present when a medication is administered. It's key he know what he is being given and why. The diary application allows me to keep a record of the medications and chemo drugs Bob is given along with his symptoms each day. A record of this information can then be emailed if needed.

If you don't have an iPhone, get a notebook, write this stuff down. Ask questions. Ask to talk to the pharmacists, even in the hospital. I did. You can. You have hired these professionals to work for you. They are typically quite good at what they do and happy to answer your questions.

Nurse

Dressing changes, injections, flushing IVs -- these will become second nature to you. You'll be afraid. Trial by fire works best. You do it because you have to. That's a pretty compelling reason to get shit done.

Master Delegator (As opposed to a master-baiter...fish on your own time)

You may suck at the daily household chores, but you can delegate like a mofo. Do it. I do. It keeps us sane. Well, as close to sane as we get these days. Our laundry is done. Our house is clean. Our fridge is full. Our kids are cared for.

These are things you can do for yourself, but they are also things that other people can do for you and often want to do for you. My laundry doesn't need me to do it. It's just as clean if someone else washes it. My kids are much happier playing with their cousins or hanging out at their grandparents' house. They have enough unfun stuff going on in their lives right now. Wherever they want to be that gives them joy, that's where they will be. Flexibility is the name of the game.

Researcher

Everybody who knows me knows I love doing research. This helps us show up to appointments informed, ask relevant questions, and explore options for Bob we might not otherwise know about. If you aren't comfortable doing research online, ask around. Somebody you know will help you. Librarians love doing research. Most of us geeky internet people love it, too.

Therapist and Professional Grown Up (Or at least have the costume so you can fake it til you make it)

You'll need to seek professional help, but you'll also need to provide it at times. Your husband may need your amateur armchair psychology skills, but what I'm talking about here is the kids. Supporting my spouse hasn't thrown me for the kinds of loops that supporting my kids has. My kids can drop me to the floor.

Your kids will need your help in the middle of the night, in the middle of the day, without warning, and in the oddest manifestations. You need to be ready. You might think your teen just has his head up his ass, but in fact, he's stressed about the fact that his father is at death's door and he doesn't have the words to express it. You have to be ready to set your own grief aside, set your own exhaustion on the back burner, and take one for the team. In our case, this is made more intriguing my our son's special needs (Asperger's and Tourette's Syndromes).

When your tween needs to hug you for the hundredth time, needs another horseback riding lesson and you don't know where the money is going to come from (but you know it is her one sanctuary), you will find a way to provide because she is a child and you are an adult and that is your role in this deal. You are the grown up. She is the child.

You do it because you love them more than you love yourself. When our children look back on this time in their lives, the one thing we want them to remember, above all else, is that they were surrounded by love and laughter.


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Short Skirts And Pom Poms: A Letter To My Husband's Doctor

A pair of pom-pons.

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Dear Dr. Waffle Cone,

While it may have seemed like a stellar idea to you to kick off today’s appointment with a doom and gloom tone while telling us that in my husband’s very grave situation the only real options are “palliative care” (which you proceeded to discuss for so long we were beginning to believe you were going to tell us the transplant option was off the table even though Bob’s due to be admitted to the hospital Wednesday morning!!!) or the very, very, very, very (could you have said that word one more time) risky (another word you wore the knees out of today) allogeneic stem cell transplant.

Now, I understand it’s mingling with the mortals. I have to do it myself. So, when I ask you well-thought-out questions about my husband’s diagnosis, treatment and future prognosis, answers that equate to “meh” and “he’s S.O.L. if the transplant doesn’t work” aren’t acceptable to me. Why? One, because I know better. Two, because you know better. Three, because we deserve better.

Now, back to your bedside manner. Here’s the deal. Our oncologist at Kaiser, Dr. W, he’s an awesome dude. He’s delivered more bad news to us than he’d probably care to remember, but guess what. He’s done it with a no-bullshit approach we love (you claim to like to be direct—we dig that,too), but he always manages to maintain a sense of humor. How can you not? You picked a field of study and practice where people are going to die, paint a fucking smile on your face, wear a mask if you have to, bring a fart machine. I don’t care what it takes. Lighten the gotdayum mood, dude.

We know this is serious shit. We’re the ones facing his mortality. We’re the ones explaining it to our children. We’re the ones checking our wills. Our life insurance policies. Filing for disability. Looking for housing and childcare for the next four months. Maybe you’re not working on a study about the effects of the patient’s psychological outlook on prognosis, but somebody is and has, and I’m telling you, your sourpuss ain’t helping shit.

Next time I see your ass, you better have on a cheerleading skirt and some mother fucking pom poms. I want to see some high kicks and a big “Go! Bob! Fuck That Cancer!” Or, so help me, God, I will knee you in the nutsack.

Carry on.

We'll see you at the transplant. With our pom poms, cuz that's how we mother fuckin' roll.

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Would You Be Ready For This? The Financial Side Of Cancer

Aflac

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We consider ourselves fortunate in may ways. Yes, my husband has cancer. However, he has a job. We have health insurance that’s covering the cost of his transplant and a housing allowance during his recovery, and state disability insurance to cover a percentage of his lost wages during the time he will be unable to work.

That said, we will have to use our savings to subsidize the difference between what he will earn on state disability and what his salary would normally be. Thankfully, we have money saved. If we get into a situation where we have to pay COBRA, we will have to dip further into that savings. But it’s a far cry from being without health insurance or savings, like many Americans.

Since my husband works for a small company that doesn’t provide disability benefits of their own (true of many small employers), we are left at the mercy of the state of California’s disability plan. We don’t qualify for a private long-term disability plan because he’s already been diagnosed with cancer.

My advice to you? Get a long-term disability plan that is independent of your employer. Now, while you’re healthy.

We’ve had life insurance since our children were born, but that doesn’t help us now. It doesn’t help when I need to be a full-time caregiver and my husband will be out of work.

Fortunately, he works in a field that doesn’t require him to do physical labor, so he should be able to return to his job sooner than others in his situation. But that doesn’t make this any less stressful. If we’d had a disability insurance policy that covered the gap, it would have been one less thing for us to worry about during an already stressful time.

I used to think those AFLAC commercials just had a cute duck. Hindsight and stuff.

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