Radiation

Eli finished his radiation Wednesday, October 13th. He had some increasing pain in his back, so he had previously been unable to lay down on the table long enough for the radiation. So, I gave him all the pain meds at my disposal (maybe 5 or 6?) and he was able to finish. Eli expressed the desire to radiate his neck tumor, but it would have been more painful to lay down for radiation than to live with the neck tumor.

Activities

Eli has continued with his leatherworking, making progress on several smaller projects. His increasing fatigue has slowed him down, but he still enjoys going to This is the Place, when he and I both have time and energy. I admit that I’ve needed a break from going places.

Drain

I spent the last week or two trying to address Eli’s back pain so that he could handle a CT scan in order to radiate the tumors causing Eli’s back pain. Chicken or the egg, anyone? Ultimately, we settled on admitting Eli back to hospice so we could get better access to pain management options.

Thia week, just as we finally got the pain better managed, Eli’s condition worsened quickly, with symptoms like he had with his previous pleural effusions, so I went from pain management to requesting a chest xray and chest drain, again.

We decided to leave the left drain in, even though nothing is draining from it anymore, just in case we need it later. He was admitted to the hospital, after being on hospice less than a week, on Friday, October 22nd, for a CT scan and chest drain placement.

He’s very tired and now sleeps most of the time, like he was in August. He’s back on oxygen when I discovered his O2 saturation on Wednesday night was 66%. I hope that by draining the excess chest fluid he will make it through this month. I am not expecting as dramatic a response as our previous drains, but I hope he’ll be more comfortable and have a little extra energy for a bit. He is having more bothersome symptoms related to the cancer that we are looking at addressing with more radiation.

Learning to Die

As I write this, I am waiting with Eli for his last chest drain. I have had to weigh the pros and cons of each step of this descent towards death to help Eli decide what procedures are worth undergoing and which are not. He continues to fight this cancer and seems reluctant to stop all treatment, so I find myself wondering how best to help him lay down his sword and rest. This is particularly hard when I, myself, don’t want to see him go, but I don’t want him to suffer any longer. When is living no longer living?

In August, I didn’t think we’d still be at this. We’ve been able to do things, like Disneyland, Renaissance Faire, FanX, and leatherworking, that I didn’t think would be possible as I watched his decline most of August. Now, as we approach the three year anniversary of his cancer diagnosis, all of the memories come flooding back in a montage of bitter and sweet moments, beginning with Halloween in the hospital and nearing the end almost the same way.

“I need some exercise.”

Saturday, October 23rd: Eli’s procedure is over and we are back in his room recovering and waiting for discharge from the hospital. He’s more awake and he’s hungry. Good thing I brought all of his favorite food options with us to the hospital–this is a Mom Win moment. While eating the spaghetti his cousin Rebecca made (thanks Becca!), I am reading a book to him from his favorite author Brandon Sanderson. Listening to his audiobooks has been a lifesaver throughout the last three years and numerous procedures, clinic visits, and hospital stays.

It seems we still have a few more memories to make, during what will probably be his final weeks. The CT scan showed so much cancer, that it is surprising Eli is still with us and able to walk around, even a little.

He needed to visit the bathroom just now, so he was preparing to get out of bed. I suggested that I just get him the plastic urinal, but he declined, saying, “I need some exercise.” So, next time you feel the need to take the easy way out of something, just think of Eli, body riddled with disease, who has every excuse to stay in bed, but gets up, because he just “needs exercise”. I know I will. He’s got this.