Medical Update || Shoulder Surgery & Radiation Results

We spent a Saturday evening in Chicago celebrating the 40th birthday of our bestie, Corey. (Shout out to Corey! He is the reason we ended up dating and getting married.) Dan had just enough energy to live it up and enjoy being with friends.

So this guy likes to keep me on my toes. Wednesday Dan will have surgery for a complete shoulder replacement. First thing I know is that his shoulder hurt while he golfed, and then all of the sudden we are in for a matrix bionic shoulder!

Ok, that might be extreme, but I have seen the sling he will need to use and it kind of makes him look like Robocop anyway. I am anxious about his recovery. He has had some serious fatigue the last few weeks. I think it is a cumulative effect from being on a full three months of Alcensa. (Maybe radiation related too? It’s no cake-walk for the body...)

My primary anxiety is the thought of him getting any sort of infection during or after surgery, so just keep us in your thoughts.

During all of his pre-op appointments, Dan did follow up with our oncology team which included the radiologist. His bloodwork continues to be good on Alcensa. His MRI showed the round of targeted radiation three monthsh ago accomplished its task, so we are good to go for the next while. Go ahead and pop your champagne.

I am caught in an awkward place of loving this man with everything inside of me and also thinking of his physiology; the risks of everything and the impact of every decision. I know we are so lucky to even be able to address something that is a source of pain for him and allow him to have surgery. I am also devestated by the conclusion that the majority of the deterioration of his shoulder is due to the steroids over the past three years. Damn cancer. But how can I complain about one deteriorated joint? I grieve so often for young ALKs like Dan who have lost their lives.

This is a wild place to exist in–this stage 4 lung cancer reality. I often look at him and don’t realize what has happened—it is just him. But more times than not, I am taking it all into a full account. I risk sounding moody and gloomy for the fact that I feel I have to give an honest account of our journey. It is ours alone, after all. Just us.

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.

One Week in Photos 10/13-10/21

A visit all the way from IL - Andy and Sara!!!

We love the cards and packages we are getting! Keep it coming! It is so awesome. We have had several people send notes from classrooms and they are so entertaining and sweet! It was a busy week of each of us trying to get back to a little work, help from friends visiting from Illinois, Dan attending a Timbers game and out with friends to watch the Bears, and appointments and decisions regarding his treatment. He is still feeling good with no side effects from his radiation treatments other than irritated hair follicles and some acne. We believe he has accumulated more fluid in his chest again (he can tell a little difference) and tomorrow he will have another Thorencentesis to remove it. Chemo will begin next week, on Thursday, October 30th, with three drugs –to include the trial drug Jakafi, as part of  a research study at Providence. In order for Dan to be eligible, he needed to be at least 4 weeks post radiation at the beginning of the treatment. Today and the next two days will be composed of many preliminary tests to give the researchers the most complete information possible of his health. MRI, CT scan, bloodwork, etc. Please continue to keep us in your thoughts as we move forward.