Saturday, August 26, 2017

After MRI Results


Dan is super chill. There just isn’t much that can ruffle him. He gets scanxiety (scan anxiety) just like the best of us, but he never really worries or freaks out. The only way I know how to describe him to people is that he is “zen.” There’s not much that can ruffle his feathers. He keeps an even temper, always maintains his sense of humor, and is focused on the simple things each day.
I know this sounds super amazing–and I get that. However, I just have to share a caveat that I am MARRIED to him and have loved him for nearly 15 years and that which is the best about him is also what drives me crazy. Ha! But that’s another post. So, Dan’s lack of irrational decision making, impulsive reactions, and volatile emotional roller coaster rides gives ME the opportunity to do what I DO best. So here is a glimpse of our lives during the 24 hours following our latest MRI results.

6 Days prior to MRI results: Dan has routine scans, we proceed through the week as normal. I try to get all zen like him and sit on the patio, take in nature, and make sure we enjoy some sex before the chemo treatment (ALERT ALERT ALERT TMI WARNING: Dan is unable to have sex the week following treatment in order to protect me from the chemotherapy that would be transmitted.)
Instead of being super zen, we both end up eating a lot of ice cream, sleeping poorly, and getting into ridiculous arguments like, Who do the black sweatpants in the laundry room BELONG TO? Grandpa Don says they are not his–they have a drawstring and GD’s black sweatpants do not. Dan says he doesn’t even own sweatpants, black or no. When casual around the house, he only has a pair of pajama pants. I KNOW Dan actually has black sweatpants. Back and forth. Just claim the effing sweatpants!!!

On Wednesday at 11 am, I was at work while Dan was at the doctor office for results during an appointment with the onc before his chemo treatment. Jim and Char were in town for the results, so he wasn’t alone. (I don’t like it when he is alone and gets news. He was alone with his actual diagnosis and that haunts me.)
A new tumor in his brain that has sprouted and chillaxed since his last MRI requires a consultation with the oncology radiologist. Then we will decide if we want to do targeted radiation (as opposed to whole-brain radiation; this would isolate the cancerous cells) or wait and watch it.
He texted me immediately so I knew. I call and we chat.
I focus on my tasks at work. I keep busy and I do NOT think about it. All afternoon, my IBS kicks it into high gear. I steal a moment to text a few people the troubling news. Ugh. Once home from work, I begin consuming alcohol. I have a stellar Revolution IPA 12 pack in the fridge at my fingertips. The weather is nice so I sit on the patio and talk with a friend that I contacted immediately for such a day as this.
Like a genius, I decide to drink beer for dinner. Weget Raine to bed, and of course, he has no idea what is going on. We read, laugh, and cuddle. Dan chooses beer over ice cream and we finish off the second season of Master of None. That’s a really good show.

The following morning, I actually manage to get Raine to school on time while Dan takes a substitute teaching job. I worry about him being on his feet all day. At home, I sort through and organize all of our medical bills, only to abandon them instead of paying them. I attend a (well-timed) therapy session, which has a two-fold gift; I cry with grief for the overwhelming and desperate desire to have my mom back, right before I enter the office. (I haven’t cried for her in a while so it was definitely needed.) And throughout the session, I become increasingly hopeful as I remember ways that I have been creative with writing and sculpture–and how that creativity helps me cope.
But then—A shopping binge at Target. Resume drinking at noon. Chat with my sweet friend on her porch.
Then I climbed into bed, read, and then fell asleep. Sometimes that’s it—The crisp, cool sheets, a blanket with a familiar smell, and lazy reading with big, thick glasses. It’s medicinal.
Tomorrow is another day.

Saturday, August 19, 2017

Podcast: “Fighting Cancer” from TED Radio Hour

At certain moments in time, I do like reading books, listening to podcasts, or watching documentaries related to the science of cancer. It is helpful for me in mitigating the anger and depression while knowing loved ones who died, are actively dying, or living precariously with the disease, like Dan.
For someone who completely hated the subject of science in school for 20 years, I really am fascinated by it now and really geek out often with certain subjects. Expect me to share what I find–good or bad–more in this space.
I listened to this podcast today, Fighting Cancer, while driving to and from work. I like to hear the individual voices who are in the science labs and doing the tedious research and problem solving. You will probably never be surprised that they are nearly always motivated by personal experiences with cancer.
This one gives a good glimpse at a few of them. And they also impact Dan and his type of cancer directly, so it is comforting to hear about the work being done. Even if it isn’t enough, or quickly enough…It is just good to know.

Friday, August 18, 2017

Dearest Don Raine



Dearest Don Raine,
I’m not sure where to begin. I thought I could be one of those parents who blogged that could (well, blog reguarlarly for starters…) post letters to their children, but it turns out I am not and I haven’t even been doing a good job of trying. It has actually been two years since I wrote my first blog letter to you. I’m not going to apologize because there’s a delicate point to be made that perhaps all of my blog is for you. It is for me, to create and cope; it is for those who read it, to take what they will from it; and then there is you. You will become someone who reads it with the extraordinary gift of having been inside its world. To be a part of the very heartbeat that is my pulse in my fingertips at the keyboard. I don’t think about this much at all. As a writer, an artist, someone trying to survive–I don’t think about this space more than the basics. It has to just breathe on its own.

It is August of 2017 and life is complicated. We left our blue house and left Oregon. We came to Illinois and lived in a white house so that we would be closer to family. However, your grandmother Mary died this past winter. You had seen her in person only a handful of times in your short life, and then you had six months to be around her, warm up to her, and then hug and talk to her. I used your anatomy coloring book to teach you why Grandma Mary looked and acted the way that she did–one of her organs didn’t work properly. You are very tender and caring and like to comfort me when you know I am sad and miss her. You have had many questions about losing Grandma Mary but you are honest and seem satisfied with my answers. Ha!–Until you think of another question. You were not afraid to see her dead body and touch her at the funeral. Your generosity at that time was a part of my healing. Thank you.
First day of school - First Grade

 Your father still gets his special medicine every three weeks. You are now able to pronounce it –“chemotherapy” and you can also pronounce his disease, “cancer.” At this moment in time, he is here with us every day. Solid with his warm skin and heavy weight on your bed at night, he counts from 299 to 0 so that he can tell you he loves you and send you to sleep relaxed. He helps you ride your bike. You play video games and do science experiments together. He takes you on road trips, finds parks and places to play or explore, and makes sure you keep trying at things like fishing and soccer, or reading and eating new things. You have developed a keen sense of what buttons to push and how to get what you want from him. (You know that he will give in a lot easier than mommy will).
He is with you every day unless he has to be in the hospital or he takes a road trip by himself. I have not showed you in your coloring book all of the parts of daddy’s body that are hurt by cancer. I was afraid but now I am ready. I need you to know because you have fallen in love with your father. As we take our next steps, you deserve to be a part of the conversation.


You continue to be the best of both your daddy and me…Except your favorite subject is Math. We don’t know where you get that.