Sunday Notes || 2.4.18

Things that made me smile the last two weeks … What made you smile?

Having drinks with my neighbor and friend, Taylor, Friday. We used some of my mom’s glasses from the hutch collections to sip our blueberry sour lambic. She helped me untangle ribbon for the gift boxes. We talked about anything and everything while the kids played. You know, adulthood?

Raine describing the new business to his buddy: My mom got a business. She makes boxes (gesturing to them). She puts little surprises inside and when people open them, they’re like, “WHAAAAAAAAAAAAAAOOOOOOOOAAAAAAHHHHHH!” Should I make that my tag line?

The sun. I know everyone here thinks it is so gloomy and awful in the winter, but OMG THE SUN. There is so much sunlight through the winter! Oregon truly is vampire land. (Don’t get me wrong–I still miss home.)

 

Berry. I can’t have a baby so I got a hamster. Every time I see her, she makes me smile. She’s just so darn cute!!! She is usually in Raine’s bedroom but I like to bring her out and sit her next to me while I’m at the computer. She performs parkour sometimes. Just like Raine.

I finally put a bookcase together for our bedroom. I KNOW. ISN’T THIS EXCITING STUFF. If you can believe it, I still feel like I am moving in and trying to get settled–after 8 months. There have been stages to move through learning how to make the space ours and honor my mom while packing some things away or using them ourselves. It’s tricky. Anyway, as I accomplish parts of nesting, it makes me smile. And I think she would like what I have done.

Watching Dan read. It fills my heart up. We both read voraciously as children and young adults. Somewhere in life, though, you get busy as you get older and it is easy to lose that habit. I’ve said it before that he has enjoyed reading more since his diagnosis. He read at chemo treatments and now that he is using disability and not working, he reads so much. And he is fast. He just finished The Ocean at the End of the Lane by Neil Gaiman (he recommends it) and is currently reading Juliet, Naked by Nick Hornby. I just finished Homegoing and loved it.

My dad and I built our first wooden box together and it took two hours. We ended up with a smaller box than intended because we couldn’t figure out what we were doing wrong when it didn’t fit right. We kept cutting until I wondered if we were going to have anything left? We slept on it and both realized we should have had a design planned. Regardless, he fixed it.

I'm finally realizing the dream of a gift box business!

The Garfield Conservatory

Sunday, Sunday || Ed. 1

We survived another week! Time for another.

Things that made me smile … What made you smile?

• The kindness and generosity of somone who is going to help us get Hobbes treatment to remove the tumor on his tummy.
• Creating a new playroom for Raine so that he can pretend he is an American Ninja Warrior.
• Vegan cookies from a local restaurant, Cyd's. My options are thin for a dairy allergy, so when in Peoria ... I buy 4 cookies and live large! I would share a photo but I ate them too fast.

• Catching up with friends. Celebrity name drop! TAYLOR BLACK. JON BYLER DAN. ALLYSON PATTERSON.

• The support of my psychiatrist and hot therapist to find a way to coupon it UP and score me my $600 generic Abilify for $24. (Hint: This involves using the interwebs and Costco.) If it weren’t for them, and Dan’s support, I would have not tried the med. But this new tiny 5 mg is making a huge difference. We think...

• Sympathy cards in the mail for the loss of my Aunt Joan. You might not think people still appreciate a card in the mail — but we do.
• I finished a puzzle. First one from my wish list of Eboo puzzles. Time to save up for #2.
• I love me some Pinterest but every once in a while? A magazine, posterboard, and tape is so gratifying. Call me old fashioned.

• Making a collage. Old school with tape and magazine photos.
• My husband. Just him. I smile always in my heart while it bursts with love.

• I have 8 orders for my gift box hobby before even sharing the link to the order form or information about them. It looks like it is time to launch the biz..! Like, in the next 24 hours. Valentine’s Day will be here fast. I'll name the biz ... Cardinal + Finch.

Dearest Don Raine || Ed. 3 This Was 2017

I regret that I didn’t write and share photos more in 2017 in this special space. The loss of Grandma Mary at the end of 2016 extinguished a spark in my heart. I worried that the spark could never return. I now know that her death changed me, Leah, as I know myself, evermore. It feels like I had to get used to this new version of me all year long. If you should lose a physical part of yourself–this is what I imagine it would feel like. How does one begin to live anew without want for what was lost? A leg, hands, sight, or hearing?

I find my motivation to keep going and learn how to live this new way comes from the truth that I am not alone. I do feel alone in grief. However I try to focus on the logic that there is a togetherness for us all. As humans we hurt, despair, weep, disbelieve. And if any other human can feel what I feel and keep going? Well, then I can, too. So that is what I can tell you about this year for me. It probably sounds horribly depressing, but you have to find the hope I have there inside it. The spark.

2017 began in a wake of grief, and 2018 will, too. But let’s keep going. There are joyful moments yet ahead.

In 2017 – Daddy solidified his place as your best friend. You would never admit this; daddy might not even agree. You spend more time with daddy than anyone else. Because he is now a stay-at-home dad, he keeps your world in order. He cooks your meals and is your chauffeur, supervises your schooling and makes sure you do your homework, takes you out for adventures, plays video games with you, and also steadfastly continues to count down from 300 every night to help you fall asleep. Already in your short life, he has taught you what you need to look for in a best friend: devotion, humor, and companionship. We are still working on the quality of compromise.

In 2017 – You hit your independent stride. By the end of the year, you learned a lot at school but also taught yourself that you can enjoy doing things on your own and take the lead when you want to. You wake extremely early but don’t expect much from us. You enjoy your alone time; talking to yourself in the bathroom, dressing yourself (this part is so entertaining to me), brushing your teeth, and playing by yourself. You are comfortable entering a room of children that you don’t know and making friends. If we let you, you’d already be riding your bike to school by yourself or just getting your drivers license already so you can go to your cousin’s whenever you want. You taught yourself how to play more video games and puzzles. You LOVE word searches. You strongly believe that you know everything about everything, especially now that you learn more in school. You inform me when your artwork is pointillism, about the traumatic plight of the pilgrims, and the right way to sing songs. Most exciting for daddy and I? Your ability to read on your own. You grew leaps and bounds with your reading this year. I’m a little proud to brag that you read at an intermediate level already at the age of 6, along with only 2 other children in your first grade class. You went from reading your first book to us in May (I cried) –Dr. Seuss’ Green Eggs and Ham to plowing through chapter books like the popular Captain Underpants series by Dav Pilkey. (And don’t EVEN ask me why adults want to CENSOR this book from children like you. Goodness gracious. These are the times.) We have throughly enjoyed the pleasure of telling you that you may read in bed until you fall asleep, when you are unwilling to stop after we read as a family, or because you are just having a hard time falling asleep! I also cried the first time that I walked in to check on you and you were asleep with a book on your chest. Clearly, daddy and I value reading.

However, looking ahead to this new year, we’ve got a squad goal: greater independence in the kitchen. Daddy and I tend to spoil you by serving you like we are your slaves. Let’s get you making your own bowl of cereal for crying out loud.

In 2017 – You are having the time of your life. I am amazed at how much FUN you have at your fingertips. Dare I say, you are super privileged. You’ve got a crew of neighbor kids to run around with, opportunities to travel, go camping, and explore museums and parks, as well as enjoy your hobbies – biking, reading, playing video games, and training to be the next American ninja warrior. We are doing our best to keep it all balanced, as parents our age seem to obsess over. You know, SCREEN TIME. It’s a thing. You are also learning to enjoy food beyond your sweet tooth. We are so proud that you are willing to try anything that daddy cooks or any restaurant we take you to. This is also something parents our age seem to obsess over. PURE, ORGANIC, NATURAL, DON’T EVEN CONSIDER A HOT DOG OR SODA. I think we are teaching you something in between the extremes, but if there is one thing I could name that is maybe the top joy in your life — It’s a serving of ice cream at the end of a long day. Well, actually, ice cream anytime of the day, of course. But ice cream before bedtime is a ritual from my childhood that you gladly embrace today.

In 2017 – There are some tough life questions you are continually contemplating. You are learning what pain, loss, and suffering are. You know daddy has cancer and what different things happen to people when they have cancer. You understand the concept of history and know what war is, which means you are very interested in learning how to discern what is real and pretend. Seeing commercials and knowing more and more people reveal more to you about death, illness, disabilities, and injustice. You process these by observing my lead and then asking questions at random moments where I am so caught off-guard that it almost makes me laugh. I hope you will always talk to me. You also have your cousins who are trying along with you to make sense of these things, and they had to learn about illness and death even earlier than you. Mostly, we show you that there is much to be learned in nature about peace and strength. There is the comfort in the science of our world as well as hope in what is mystical and we just can’t explain. And when we talk about death, we talk about love.

In 2017 – I’m pretty sure I am a solid 2nd place for the best friend category.

I am always treading water as your mother; I get pulled under by my health issues but fight to stay above water for moments where I can be childlike and joyful with you. I give you my best when I have it, and that seems to make you happier than ever. When I don’t have my best, I hope you don’t notice. But I know you do. Still. As your 2nd best friend, you like when I am lying with you and we are cuddling. You appreciate that I take great care with the pain you have in your legs. When you have strong emotions, I don’t ignore them or tell you how you “should” feel. I am willing to help you maybe go a little wild and crazy at times? I have taught you already that a good 2nd best friend is a little wacky, creative, affectionate, and ready to fill in when best friend #1 is down for the count. I’ve got daddy’s back and I’ve got your back, buddy.

When I think about all of these attributes and adventures that have developed and taken place in just this one year for you, it is so unbelievably hard for me to imagine what I would share with you on January 1st, 2019! I am looking forward to more joyful moments. We are so blessed by everyone in our lives and the beauty around us. Here we go…

(love, mama)

Talking to Raine About Daddy's Radiation

It was a quiet Monday night. We finished dinner and Raine was anxious to watch the tv show The Voice, his latest obsession (he is rooting for Noah). Rather than head for the living room, I asked him to stay at the table for a talk. I was flying by the seat of my pants in an attempt to tell him about Dan’s radiation appointment the following morning. Dan didn’t even know it was coming.

***

First, I busted out his creepy puzzle that reveals all of the anatomy of our bodies. It lets Raine place puzzle pieces in layers–skeleton, organs, muscle, and skin, as well as the clothing worn on the outside. (Made by Hape, you can find it here.)

As he put the puzzle together, I told him daddy would have a doctor appointment in the morning that would be radiation for his brain. We looked at the brain piece of the puzzle and I said it would be like super cool lasers as medicine for three places in daddy’s brain.

Second, I had him look at our Kimochis® emotions. (You can find them here.) This is the first time I used them and it went really well. First Dan and I picked ones that showed our emotions about the procedure. Then Raine chose Scared, Shy (he had it equated with feeling uncertain) Grateful, and Loved.

Third, I asked him to help me think of ways that we could help him with his emotions. We made a list for each one:

Scared – Have daddy tell him all about it when it is over and answer any questions Raine has.

Shy – (Uncertain) Hugs before school.

Grateful – Make a thank you card for the surgeon.

Loved – Hugs AND kisses after school.

He made his card for the surgeon and then spent a solid twenty minutes in a competition of throwing the plush emotions from the dining room to the front door as far as he could.

***

On the way to school in the morning, Dan sent us pictures of him getting ready for radiation. Of course Raine wanted to know if it would hurt. We told him no. (The pins Dan would have drilled into his skull would actually be one of the most painful things he has ever experienced. But would you ever let your kid know that? Nope.) We tried to emphasize daddy was fine because he was smiling and looked a little silly. Raine was still scared for Dan, and about it hurting. He told me he hopes he never has radiation. I agreed that I hoped I never would, too.

So the photo backfired…Later that day, I asked Raine how long he was scared or worried and thinking about daddy while at school. He honestly informed me that he did all morning–until his favorite time, recess and lunch. However, that night, even with Dan in bandages all over his head, Raine felt ok because he knew why they were there, Dan answered all of his questions, and Raine received lots of hugs and kisses from mommy.

***

Raine is 6. He is very aware of how we act and what we talk about when we think he isn’t listening. He is picking up more references to cancer–particularly during the 2,000 commercials about cancer drugs during one episode of The Voice. Dan and I had the equivalent of scanxiety x 1,000 leading up to radiation and everyone can feel that–even Rocco, who paced and howled more than usual.

I want Raine to know when Dan is having treatments and help Raine understand what will happen. I want him to be prepared. I want him to feel included. This is big stuff, after all. Big stuff I would rather he not have to deal with–but this is our family and our journey.

Medical Update || Some Zapping

We are pros at waiting in doctor offices...

I suppose I could have waited one day for the update, but for once I wasn’t on top of my game and didn’t even realize there was an appointment this morning at the gamma knife center. I thought Dan was only getting an MRI, but he was actually discussing the results of last Tuesday’s MRI.

The decision is to perform targeted radiation. The focus is three areas, two of which could have been remnants of his original mets that were initially treated when Dan had whole brain radiation. The third is the spot we recently decided to watch more closely. This doctor wants to target it now and not wait and watch.

Radiation. Dan calls it zapping. I believe it is a good choice to zap right now…But again, change is hard so I’m doing my best to be brave.

Medical Update || More MRIs and Stopping Chemo

“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.” – Paulo Coelho

Based on MRI results in August, we spoke with our new radiation oncologist, Dr. Mackenzie McGee with OSF, as well as the opinion of Dr. James L. McGee, and have increased the frequency of these scans and now have them at the gamma knife center in Peoria. There is a spot that could be brain mets but it hasn’t changed recently. It will be more closely monitored if they find enhancement, gamma knife radiology would be the next step.

In other news: With a decent amount of trepidation, we changed Dan’s maintenance therapy. He stopped chemotherapy (an infusion of Alimta [pemetrexed] every three weeks) and started Alcensa [alectinib], an oral medication. 

He had success with Alimta for 30 months straight. It is no cakewalk, so somebody get this guy a trophy. I’m pretty sure he set a record anyway.

Despite the success, together with Dr. Kumar, we chose to have Dan begin taking Alcensa because his chronic infections were getting increasingly tough to manage and affecting his quality of life. Last year, Dan endured six months of recurring cellulitis with two hospitalizations for drip antibiotics. He has had five months of the infection so far this year with multiple outpatient drips and constant, increasingly stronger, oral antibiotics. My fear of an antibiotic-resistant super-infection began to really stress me out and Dan was tired of it all on top of chemo side effects every three weeks.

While there are patients who only have the option to stay on Alimta, Dan has a few more. So we are more than astoundingly grateful.

[Disclaimer: I’m going to go into these options and if that is boring, you can just skip ahead.]

He is one of the 5% of patients with adenocarcinoma NSCLC who have the ALK gene, and there are several targeted medicines for it, referred to as “ALK inhibitors.” The medicine turns the gene “off” to temporarily stabilize the cancer. The first of these, Xalkori [crizotinib], was developed by Pfizer and approved by the FDA in 2011. I say “temporarily” stop the cancer because the cancer inevitably resists the medicine. Because of this, Novartis developed Zykadia [ceritinib] as a second line treatment, offered in 2014 after only a mere three years from clinical trial to approval. (This year, Zykadia was also approved for first line treatment.) Along with Zykadia, Alcensa [alectinib] was developed by Chugai (Japan) and then also fast-tracked in the US for approval in 2015. That is the one we are going with first.

I want to emphasize; Three life-prolonging medicines were developed and approved for Dan’s specific cancer within four years. That is crazy.

 Alcensa – structurally – there it is for any of you science nerds.

Anyway, once the financial aid was approved, we took the leap and Dan took his first dose Friday, October 6th. So now we wait to see how/if it works and what side effects he will experience. Three weeks in, it is the usual suspects–fatigue and constipation–but no nausea. Edema continues, which increases the chance of cellulitis, but so far so good. His is still on his daily antibiotic. He will have blood draws every few weeks to keep an eye on the usual numbers as well as new liver and muscle enzymes to watch.

And that’s the latest! More soon about what we’ve been up to and how Raine and I are doing. Thank you for taking the time to read this and for keeping us in your thoughts.