What to do when: You have terminal cancer

You make a plan.

Ours is to go home. We have loved our time in Indiana and we will sorely miss the friends we have made here, but our priorities have shifted. We need to be at home, with our families, treasuring the time we have left - however long it is.

So, in the middle of cancer treatments, goodbye lunches, and normal life, we are packing up our house so it can be rented out, and getting ready to drive across the country. With a two-year-old and a four-year-old.
On second thought, maybe this isn't such a good idea...

Update

On Friday, June 13th (our 6th anniversary (Go, us!), and my little sister's 21st birthday (Go, Laura!)), I called my oncologist to see if he had the results from two MRI's I had gone in for earlier in the week. He hemmed and hawed and asked if I could come in on Monday to get the results, "Oh, and bring Adam."

That bodes well, right?

The weekend was spent doing mental "worse-case-scenario" exercises, all while trying to distract ourselves from those ever-darkening thoughts. We went bowling, had pizza, played at the park, and attended church.

Monday morning we showed up for our scheduled execution, or at least that's what it felt like. The news was, as expected, not good. The last year of radiation, chemo, surgery, more chemo, more radiation, and boatloads of various medications seems to have missed a couple of key areas: my spinal cord, and my brain.

As we left the doctor's office, the clouds opened in a heavy downpour, as if the world itself wept alongside us. My oncologist doesn't expect me to last even six more months. It could be as few as two or three.

We are so grateful for the people who have rallied around us during this difficult time. Our wonderful ward has lifted and strengthened us. Our families have sent prayers, love, and financial support, as well as offers to come help. We have basically canceled all future plans and as soon as possible we'll be heading back to Utah to spend time with family. A huge thank you to everyone who has helped us with meals, packing, childcare, emotional support, prayers, and thoughtful notes. We don't know what we would've done without you.

I'm not as smart as my phone

Not too long ago, I hopped on the smart phone bandwagon. I have since realized that it's a dangerous device, but that's neither here nor there. I'm looking for some advice. I feel like I take more photos now, but I don't feel like they're great quality. I keep hearing about these photo apps and I'm just wondering what the point of those are. Are they like Instagram and add filters, but without the social aspect? Or are there apps that have more editing power? Do any of the apps improve the quality of pictures or help you have more control over exposure or shutter speed? Any recommendations?

Also...is Snapchat a real thing that people in the real world do? Do you Snapchat? What on earth is the point?

Any recommendations of good/useful/entertaining apps (for me or the toddlers)?

Is this what normal feels like?

At some point during chemo I forgot what it feels like to feel good. Forget good, I couldn't remember what normal felt like. I would wake up and bury my head under the pillows because getting up just seemed way, way too hard. And then I started to assume that the way I felt every day was just normal, and that I would feel terrible, horrible, no good, very bad every morning for the rest of my life. The days stretched out in my mind like this eternal, beige-colored, no-end-in-sight, not actually going anywhere road that I had to walk. That's when the depression set in. I felt trapped in a sad, sick, tired body that couldn't do the things it needed to in order to help two amazing children feel loved.

Thankfully, chemo ended. And I woke up this morning thinking "Hey, getting out of bed isn't that bad." And then I got up and was a kind, loving, and fun mother to my kids all day long.

When the kids were asleep, I looked at Adam and said, "I BAMMED today."

Yes, this picture was taken today.

P.S. Remind me to tell you about the time I BAMMED the library.

Japanese kigurumi

I have an amazing friend named Jamie who sent me this (and a red panda one as well) for Christmas. It's amazing, everyone should get one. Bonnie out.

Today

Today could have been one of those days. But it wasn't, which makes me happy.
Lydia screamed and cried about me handing her the breakfast she requested. The whole morning went down the tubes from that point on. After such an illustrious beginning, I anticipated her doctor's appointment being a nightmare, with more weeping and wailing and gnashing of teeth. But as soon as we dropped her brother off at the neighbor's house, Lydia regained her composure. The drive to the pediatrician's office was pleasant as we talked about what might happen there. Ever the chatterbox, Lydia enjoyed asking the nurses about every detail of their work. And after her painful shots ("Mama, that really hurt my legs!") a new book was just the ticket to return a smile to her face.
The rest of the day went smoothly, with no fits or tantrums, 3 naps for 3 tired people, and a lovely dinner followed by FHE with friends. I am so grateful that we made it through.

Super low quality, but super cute

Blurry, messy, and half-naked, but somehow still cute. Alternative caption: apparently they can play happily together for more than 15 seconds.

Fortune

"Keep on keeping on."

Most appropriate fortune cookie I've ever opened.

A tasty treat

For  FHE (Family Home Evening) tonight, we learned about the brother of Jared with a flannel board story. Rafe insisted on putting the pieces where he wanted them, and Lydia had some great suggestions for what Mahonri Moriancomer could have used for lights in his boats (flashlight, candle, and lamp), but the highlight of the night was dessert.

Caramel popcorn is a favorite from Adam's childhood that we have recently started making a lot (probably more than necessary). The recipe comes from a ward cookbook from almost 25 years ago, which is kind of awesome. We especially like it because it's a recipe that the kids can be really involved in. Watching popcorn pop is always a hit, and when everything goes into the paper bag, they can help shake it. I thought I'd share in case anyone else wanted a fun, quick, yummy treat. We always burn our fingers and tongues trying to eat it right out of the bag instead of waiting for it to cool.

Microwave Caramel Corn
3 qt. popped corn (we have a stirring popper that we love - hardly any unpopped kernels!)
1 c. brown sugar
1/4 c. light corn syrup
1/2 tsp. baking soda
1 1/2 c. peanuts (optional)
1/2 c. butter
1/2 tsp. salt

Place popped corn and peanuts in a large brown paper bag. Combine brown sugar, butter, corn syrup, and salt in a 2 quart glass bowl. Microwave on HIGH for 3 to 4 minutes. Stir after each minute. Microwave 2 minutes more. Stir in baking soda. Pour syrup over popped corn and peanuts.in bag. Close bag and shake well. Microwave 1/2 minute more. Shake bag and pour popcorn into large roasting pan. Cool and stir to separate caramel corn kernels. Makes 3 quarts.

And, because I've had a lot of pictureless posts recently, and that's terrible, here are some shots from back in November.

Babies

This morning (or a few days ago, depending on when I decide to post this), I got to spend a blessed hour watching the couple-months-old daughter of a good friend.

I held her swaddled body close while swaying back and forth. It all came back. Those motions and the soft murmurings (not really saying anything at all, just letting that beautiful baby know you're there) that happened so naturally when my two were new came back in a rush while cradling this perfect little girl. She fussed a bit and I rolled her over so she was facing the floor as I patted her back. She sucked her pacifier for all it was worth until her whole body relaxed into sleep. Turning her just slightly so I could see her delicate (tiny!) features I was so grateful for the opportunity to hold her for those precious moments. It felt so familiar and yet so distant. Distant from my life of independent, active, wiggly, outspoken toddlers. 

And then I felt a little robbed.

Because I should be able to have as many of those perfect babies as I darn well wanted to.

Cancer is a jerk. The worst kind of jerk. 

Rafe at 2

The other day I ran across the word rapscallion in something I was reading and had to think twice about whether it had positive or negative connotations. After looking up the exact definition, I said to myself, "That is my little boy." The kid has taken mischief to a new level. And it's not just him exploring by getting into things and destroying things, it's him pushing peoples' buttons because he thinks it's absolutely hilarious.

When I take off his diaper to change him, he squirms away, delighting in streaking through the house in the buff. Adam has learned not to try and put shoes on in front of him, since it always results in Rafe stealing one and running away with it. His hands-down-favorite activity is getting his sister riled by picking up one of her toys and saying "Mine toy." The list could go one with descriptions of the things he has poured on the flour, a count of how many books he has torn up, and the number of times I have had to run to turn off the microwave when he turned it on by himself (after filling it with spoons).

(Warning: bad phone pictures coming up)

Fortunately, not all his time is spent destroying our lives. He loves snacks, and food in general. Cars, toy animals, and various building sets can keep him occupied for hours. His counting is adorable, and singing songs makes him so, so happy. One of his favorite pastimes is a game with Adam called "Ride Dad," which is self-explanatory, and usually leads to Rafe feeling the need to climb on people, jump off chairs, and wrestle with anyone who is willing to be engaged. In completely unrelated news, Adam's back has been really sore recently.

   

In addition to hitting the terrible two's early and exhausting everyone around him with his antics, Rafe is seriously the sweetest little guy. He loves to read. He'll climb up on the big lazyboy in his room with a pile of books and pat the back of the chair next to him to indicate where I should sit. "Wight 'ere." So I'll cuddle up next to his curl-covered head and read the mouse book, dino book, owl book, or whatever new one is top on his list. Putting him down for bed stretches on and on because when I say "Last book," he says " 'Nother book" in an absolutely irresistible way.

He's a real snuggler who loves to give hugs and kisses (especially when his sister has decided she doesn't want to be touched). He is also easily soothed by a little back rub and his favorite song (at the moment: Jingle Bells - we're keeping the Christmas spirit alive). The feeling of his little head resting on my shoulder melts my heart and I remember that I am the luckiest mama on earth.

And now he's two and less of a baby than ever. I love you big guy; I'm glad you're in our family.

P.S. Thanks to my father-in-law for the first photo!

The Infusion Center

When I go in for treatments (once a week these days, soon to be once a month), I go to what is called "The Infusion Center." It's a big room with medical recliners around the perimeter, each with a small TV that probably doesn't work, an uncomfortable chair for your spouse or friend, an apparatus for hanging IVs, and 3 different trash cans. One corner of the room is well stocked with snacks, as well as a fridge, coffeemaker and blanket warmer. About 6 nurses are always hustling around helping people.

The nurses—along with the snacks—are the best part of the infusion center. They are just so nice! When you walk in, Wendy and Alice will wave or say "Hi." Dotty remembers who you are, what you're suffering from, what snacks you like, which side of the room you prefer, which side your port is on, and what kinds of medications you have had bad reactions to in the past. As Eliza sticks in your IV, she jokes around with you and asks about your family. When your husband shows up with his head shaved, Mike laughs about how he almost kicked out that shady character because nobody recognized him. Sharon runs for basins when you want/need them, apologizes when the proteins in your vital port make it so you're in that chair for 4 hours, and scrounges up a pillow when something she gave you makes you incredibly tired. They are all just great.

As I close in on my final chemo treatment, I've been wanting to bring something to these wonderful nurses, but I don't really know what. Baked goods? A plant? Any ideas? What says "Thanks for taking care of me when I was at my lowest"?

You have got to be kidding me

So here's the deal. I'm on week 11 of 12 chemo treatments - so close to being done I can taste it (no really, I can taste the chemo treatments). Unlike *ahem* previous chemo regimens, things have been pretty easy. I thought I was going to make it home free without A) being bald again and B) any unfortunate trips to cozy up to the toilet.

But.

Today I got to spend some quality time with the porcelain throne.

And when run my fingers through my hair (it may not be long, but it's there), inch-long strands come away on my palms.

And I think "Why'd you have to get my hopes up?"

The Tale of Lady Thi Kinh

This is complete overkill, but I'm running with it. In addition to posting this on facebook and sending out an email to everyone that I'm related to, I thought I'd let my loyal blog followers know that Adam is performing in a World Premiere tonight. The opera is entitled "The Tale of Lady Thi Kinh" and is a brand new opera written by a professor at IU named P. Q. Phan. It's based on a Vietnamese folktale, but is mostly in English. I've heard very good things about it, including that the music is beautiful and the costumes are spectacular. Adam plays the part of a Buddhist monk, the head of the temple (and yes, they did shave his head for this role). He is on stage some in the first act, but the bulk of his singing comes in the second half. Overall, the opera's probably not more than 2 and a half hours.

You can watch it online through the IU Jacobs School of Music site here:
http://music.indiana.edu/iumusiclive/streaming/
It will start at 8pm EST.

*Image from IU Opera and Ballet School's facebook page. Pictured singers are not from Adam's cast, so will not be performing tonight.

The little things

Recently, I have been trying to notice the little joys in life, like

• The way Lydia calls our town (or any place, really) "our village." "The church in our village is a loooonnng way away."
• Hanging up Adam's button-up shirts and then hanging up miniature Rafe-sized versions of those shirts alongside of them
• Watching my children play with the people who love them, like their Dad or a couple of my siblings who have come to assist in the last couple of weeks
• Having good conversations with friends or family
• My sister calling nearly everyday just to chat
• The feeling of going to bed with a clean (semi-clean) house
• My nightly ice-cream (I have a problem)
• Books! Reading to my kids is so much more rewarding than I would have expected. And we just got a huge box of new/old books from my Grandma Bonnie
• Listening to Lydia's vocabulary "I'm having struggs getting my pants on"
• Dressing up to go on a "Treasure Hunt" with both children
• The moment of silence at dinner just after the prayer when everyone digs into their food and I can finally breathe
• Laughing with Adam
• The satisfied smile on Rafe's face when he has successfully explained to you what he wants
• How beautiful my children are when they are asleep. The peaceful look of their quiet faces, the innocence in their chubby cheeks, the way they hold onto their comfort "stuffies (as Lydia calls them)" even deep in slumber, and the shape of that teeny body under a cozy blanket. 

Anyone have any little joyful moments to share?

My version of a Year-In-Review

I was composing a post in my head as kind of a "2013 Summary!", but it was turning into a downer and nobody wants to read that.

Instead, I wanted to talk about the awesome things that happened in 2013.

• We saw a lot of our families! More than we expected, but that was great! With 2 family reunions, and people staying with us for 6 months of the year, our kids know their relatives a lot better. Thank you everyone for taking time out of your lives to help us! We love you!
• We kept the U.S. Postal Service in business (also Amazon). Thank you to everyone who sent us packages and notes! I'm pretty sure I haven't written over half the thank you notes I need to, but we truly, truly appreciated ever single letter, gift, or package. I know they came from family members, old and new friends, ward members, and friends of friends. It was like a hug with every box. No one feels as loved as we do.
• Our ward went above and beyond with taking care of us. I cannot even count the number of people who have helped us with watching the kids, cleaning our house, making us food, dropping by gifts, coming by to chat, writing notes, sending gift cards, and praying for us. We have felt so loved and supported by our ward family (our old ward is included in this).
• We met a lot of other people in the cancer world. Although it is sobering to think of the number of people with this disease, we also feel hopeful about how many amazing survival stories and survivors themselves there are out there. 
• We also met wonderful doctors and nurses who have helped us every step of the way.
• Our family has been thriving this year. The kidlums have grown and learned so much. They are delightful when they are not maniacs and we look forward to watching them grow more. 

Toddler Selfies

Today Rafe got a hold of my phone for a while and took approximately 78 pictures of the upper right quadrant of his face. Incidentally, that section of his face is the part that contains a bruise, a scab, and a fresh scratch that he won't stop picking at. I now have 78 pictures that make it look like I abuse my child.

He's just an active (read: crazy) nearly-two-year-old, honest!

Cooking With Kids

I almost wrote "Cooking with Toddlers" as my title, but realized that at the ripe old age of 4, Lydia doesn't really qualify as a toddler anymore (/tear).

Also, this post is not a revelation of how to make your chicken and child casserole taste delicious, so if you're looking for cannibalistic recipes, move along.

The actual point of this is to ask the question "How on earth do you cook alongside your children without losing your mind?"

A typical cooking session for me looks like this.

"Okay, keep fingers out while I'm chopping, thanks! Yes, you can help pour, but...OH that was a lot. You are such a HELPer! Yay! Rafe, the microwave is not a toy, no really, not - Stop pushing the buttons...okay, let's unplug it. Hey Lyds, what have you been up to? Oh, what else did you add to the recipe? Great (big smile) No, buddy, your sister is on the stool right now. Can we keep the fridge closed? Oh, be careful there, that's hot. Chopping is really Mom's job, but that's really nice of you to want to help. We're not unloading the dishwasher right now. Yes, stir all you want. Preferably keeping some of dinner in the bowl...

And so it goes.

I want them to learn to cook, and I want to spend time with them, but goodness gracious they drive me crazy. Any hints?

Tonight I made this delicious baked gnocchi, and when I put it in the oven I realized that I had forgotten two important ingredients (one being salt) because I had been so busy putting out fires (figuratively people, no real fires, although with Rafe's obsession with the microwave, I'm sure there will come the day. Maybe I should check to make sure our fire extinguisher is in working order).

So yeah. I'm still alive. So are my children. We might order pizza tomorrow.

Road Trippin'

Hey guys! Long time no see! A lot of stuff has happened since mid-December! Maybe I'll play catch-up, but maybe not!

In the meantime, here are some pictures from our recent trip to Tennessee.