Fighting fair

Ian and I went to Krispy Kreme last night for a treat after the SCA meeting. I had planned on a quick trip through the drive-thru but it was closed so we had to go in. No problem, we can work with this. We got Ian an apple juice and a chocolate sprinkled donut (his favorite) and a hot glazed for me (which I was unsure if I wanted but figured I would have the option). Ian happily sat and ate his donut.

Things were going well. We talked about the donut workers and the conveyor belts and the icing. I asked if he wanted a paper hat and he said, "hmm, no thanks." Fair enough. He finished his donut and we stood to watch the donuts scroll by. Things were going great.

Suddenly Ian started getting a little loud and spastic. It was late and he was getting tired and he had just eaten a donut. I get that. I told him we had to go and he said, "NO!" I told him we still had to go and he screamed, "NOOOOO!" Sigh.

So I picked him up, and he tried to squirm away. He was lunging for his apple juice and he weighs 43 pounds so I was barely able to keep him in my arms. I still had my donut to pick up and my purse and a stack of napkins. And the flailing screaming three year old. Good times.

He continued to fight me because he didn't want me to carry him "that high" (I had thrown him over my shoulder in a fireman's carry, perhaps as a bit of a 'screw you, screaming kid' act of defiance). By the time I got to the van, I screamed, "STOP IT!" but he was laughing wildly at that point so my protests fell on deaf ears.

I got the van door open and threw him into his seat, not so gingerly (man my arm was hurting). Oh and in the trip across the parking lot, he had managed to swing the donut box into my eye. Awesome. He was still laughing and spinning his arms all over. As soon as his butt hit the car seat he sprang right back up, doing his best plank impression. So I got in the van and stuck my knee in his chest to strap him in. Suddenly his shrieks of laughter turned to shrieks of rage.

There was a lot of "STOP IT, MOMMY!" and "OWIE!" and "DON'T STRAP ME IN!"

Once we got moving, I proceeded to regale him with all of my frustrations and annoyances. I shouldn't have to carry him out of the store like a baby. I shouldn't have to pin him into the car seat like a wild animal. I bought him a donut and he ate it. He doesn't get to whine over my donut. It's my (damn) donut and I'll eat it, or give it to the dogs or throw it away if I want because it's mine. I know he's tired and it's been a busy night but if he is going to act like a wild animal then we just will go home and not get donuts or go to stores or eat at restaurants because I can't take the risk that he will embarrass me or worse yet hurt me. My eye hurts from the donut box. My arm hurts from his flailing like a wild animal. And my feelings are hurt because Ian laughed at me when I told him I needed help.

We drove in silence for the rest of the trip home. But when we pulled into the driveway, there came this clear quiet voice from the back seat.

"I'm sorry for not listening, Mommy. I'm sorry I hurt your feelings." "Thank you, Ian. That means a lot."

As I got out of the car and came around to him in the back seat, he continued, "I didn't want to go home." Me: "You wanted to stay at the donut shop?" Ian: "Uh hunh. You pushed me. I didn't want to get in my seat because I wanted my chocolate milk from the cup hole [sic], but you didn't let me talk. You hurt my feelings too." Me: "Oh, buddy, I didn't realize you wanted your milk. I was busy being mad about my eye and my arm. Did it hurt your feelings when I fussed at you in the car?" Ian: "Uh hunh." Me: "I'm so sorry. I'm sorry I yelled. I'm sorry I pushed you in your seat. Can I have a hug?" Ian: "Yeah!"

"Let's go play trains, Mommy."

Closer to chemo, closer to home

After all the waiting and phone tag, we finally had an appointment with an oncologist in our town. I went with Rich for moral support and to take notes. We got a little nervous when the nurse didn't seem to know why we were there, but she took Rich's vitals and said the doctor would be in soon. She also warned us that he was a talker so it might be a long visit. We met with Dr. Michael Lee at Virginia Oncology and are already very impressed. He's upbeat, genuinely interested in all the details of Rich's situation and happy to explain everything. I've already emailed him pictures of Rich's insides, so I think that means we're pretty close now.

Dr. Lee says that he is going to spend the next two weeks doing some more homework on what our options are and talking with some of his colleagues. More so than ever, I got the distinct impression that no matter how talented or experienced the oncologist is we're talking to, no one really knows what to do about Rich because no one has heard of someone with what he has. So there's no standard operating procedure for these things.

I did specifically ask Dr. Lee if this is cancerous cells or if it is cancer in that mucin is somewhere it shouldn't be and growing without an exit strategy. Again, I had to give him credit because he said, "honestly, we don't really know. It could be any number of things that made this happen so we're all sort of guessing." Fair enough.

We thought before that Rich could have this monoclonal antibody treatment with minimal side effects. But it's looking like chemo will be the route. However, there are all kinds of chemo (we're finding out).

Normally, Rich would get Folfox for the chemo combined with Avastin as a different type of monoclonal antibody. The one that Hausner mentioned was a combo of Herbatox and Vectibix that attack specific types of cells. But Avastin is one that blocks proteins to prevent new blood vessel growth so that it starves the cancer.

Folfox would be administered via a port near his clavicle for 48 hours every two weeks. We didn't like that plan. The port gets all jacked up if you try to fight or play hockey or roll around with your three-year-old.

So instead we can try Xeloda which is the oral version of the 5FU in Folfox. That would be a pill Rich takes twice a day for two weeks and then takes a week off. The other half of that combo is Oxaliplatin which is administered via an IV for three hours every three weeks. So no port necessary. The Xeloda side effects are mild nausea, hand and foot soreness and some fatigue. The Oxaliplatin tends to have worse nausea on that first day but can be treated with Zofran or the like up front. It also can have increased cold sensitivity, both outside and inside (e.g. drinking cold liquids can be painful). None of these drugs cause hair loss or significant weight loss.

Dr. Lee ordered a fresh CT scan to see where we are now as well as blood work to get all new tumor markers. It will be our new base line. On the 21st, Rich has "chemo training" with a nurse practitioner to go over all the chemo drug options and what they entail so we can be better prepared. And then hypothetically he would have his first treatment on the 23rd. We have no idea how long we would need to continue the treatment until we see how it affects the CT scan and blood work results. It will also depend on Rich's side effects and how he handles it.

In the meantime, Dr. Lee is still going to do more homework and ask around and see if there's something else we should try first. Lee was clear to say that the chemotherapy would not cure him. It would only slow the growth or at best shrink it some. But we've already talked about the roommate analogy, so if the slime in his belly is not bothering him, we don't need to freak out and make a mess trying to wipe it out.

Rich said he was pleased his pulse was only 75. He was pleased he weighs 225 (up from 205 the day we left the hospital). And he likes Dr. Lee. He is still full of worry and sadness about the whole thing. But I'm optimistic as always.

Project 365: taking a picture every day

There have been several 2012 retrospective posts on the Interwebs these days, looking back at milestones and events. All of them seem fun, but my 2012 project was simple. Take a picture every day. This concept has been around for a while now. Google "project 365" and you'll see a wealth of Flickr pools and blog posts with guidelines and tips. But don't let all those details scare you. The concept is simple - take a picture every day.

If you have an iPhone, I recommend the Project 365 app (it's only $.99 and worth it to remove ads and get the reminder). The reminder feature is key because I have mine go off at 11pm and it lets me check my phone and make sure there is a photo from that day on it before going to bed. If not, I try to find something. Some of my most creative images are those desperate 11:37pm attempts to squeeze a photo in before the end of the day.

There is no way I could have accomplished this project without a smart phone with a decent camera. The portability and ubiquity of the iPhone lends itself to more photos. It's a little embarrassing to realize how long it's been since I've touched my dSLR camera. But I know others who have been very successful with a point and shoot they carry around.

Next, you'll need some help keeping track of what day of the year it is. January is easy, but come August you're all "is it 224/365 or or 242/365 today?" I recommend a simple chart that you can screencap and store on your phone. I saved a copy of it in my Dropbox for reference. Having the printout next to my keyboard has been helpful these last few days as I try to figure out which ones I forgot to upload.

Because of the popularity of Instagram in 2012, a lot of my pictures are square format. I'm not sure how I feel about that, but it is what it is. Now that Flickr has such a much improved iPhone app, I'm going to try to upload directly to there in the format/size I prefer to keep for posterity and then also post to Instagram as needed. (No, I'm not abandoning Instagram in January.)

If you're into themes and community, you can google some of the photo a day challenge ideas. Those have been popular with some of my friends, but I don't like being fenced into a word for each day. You can upload them to an album on Facebook. You can make a set on Flickr. You can just email them to yourself. But I encourage you to take pictures with more regularity. You won't regret it!

I try to mix it up. While I love seeing pictures of my kid and how much he's grown over a year, the idea is to capture all that's going on in my life, not his. I tried to take a few self portraits. I tried to play with some random abstract things. But sometimes it's 11:37pm and all you have a cute cat pictures. That's okay too. Looking back on the 364 photos I have so far this year (leap year made this a 366 project!) some of them are super crappy. But they are snapshots of my day. What I love is that some of them tell a story that only I understand while the rest of the world can just admire a random picture of cookies or whatever.

I am an archivist and historian by nature. I want to document everything. So this project has been right up my alley. But I think you'd like to try it out too.

Most importantly don't beat yourself up if you miss a day. No one is going to kick you out of the club. You'll still have way more photos than you would have otherwise if you only take 327 or even just 100 photos in 2013.

I'm planning on starting again on January 1, 2013 for another year of cataloging my life. Maybe I'll add a new challenge of trying to have one dSLR project per week just to remind myself why I like that camera.

You can also check out my 2012 pictures (so far) for inspiration.