How time flies...

James, Footbridge Beach, Ogunquit, ME, 6/6/18

I can't believe it's been a month and a half since the last day of radiation and I can't believe I completely dropped the ball in updating you all. I am so sorry. We are well. James is happy. We are moving on...

By the end of radiation everything was pretty raw. I had Gordon Ramsey in my brain screaming (you'd have to be a fan of Hell's Kitchen to understand) every time I assisted with suctioning, cleaning, inside, outside, everywhere. The skin had completely broken down. The neck was like the worst sunburn ever blistering badly around the sides. (Adding in here that James has a photo on his phone of his neck and stoma the last week of rad. He's offering to give it to me to post but I'm going to save you all the shared pain. Yikes.) The radiation oncologist told us that we would be shocked at how quickly it would heal, outside in a week or two although interior walls would take much longer. He was so right. By the second week his neck and exterior of stoma looked great. The interior of esophagus and trachea are better but still painful and bleed at times. He feels like it may still be a bit swollen. The rad onc, Dr. R., said it could take 6 months or so, yikes. There is still residual pain, bad at times, from the surgery. All that being said he's really doing amazingly well. He's managing the pain with a little help. He's figuring out which foods work and which don't (next paragraph) and is becoming active again so life is good.

Weight is still down but inching up day by day. I'm going to buy stock in Kozy Shack pudding co. The new favorite is the Tapioca. I still buy the rice because I like to have a spoonful now and again. Maybe it's a family addiction. He goes through at least 1 large tub a day. I stopped buying the wee little containers, such a tease! I think the pudding is nice for him because he can swallow it so easily. I've told him he can't live on Kozy Shack pudding. He just looked at me now from across the table with the tub and a spoon and without prompting said, "I could live on this." Absolutely perfect timing. No idea that's exactly what I was writing about.

Anyhow the new food conundrum is that things are sticking "up" at the back of his mouth / top of his esophagus before going down then he can't seem to dislodge it and it becomes painful. Ugh. We seriously need to figure it out. It's happened with dense meats (chicken, pork, etc) although ground beef seemed ok, breads that aren't toasted, things we could avoid. But then a pill stuck. And then rice stuck. What next. I'm going to call Dr. V.'s office (the surgeon) to see if they have any ideas or can send us to a someone who can help relearn swallowing with the new anatomy he's got going on.

Good news is that I'm becoming very adept at reading lips. We're communicating fairly well these days without having him write too much down. I have to have him repeat things sometimes (lot's of times) but he (usually) doesn't get frustrated with me. There are times when it's hard still but not as often as early on. He does best 1:1. Crowds are hard. Conversation moves at a slower pace and honestly that's ok. We're adapting. When we're at gatherings and there are groups and everyone is talking at once it's difficult and he'll find a quieter spot for focused conversation with a person or two. Eventually when everything heals internally maybe the voice prosthesis will come in to play and if so that'll make group situations easier. I think I had mentioned "burp talking" (BT) in an earlier post? He still will do that once and a while, not often, and it surprises me in a good way. So fun to hear a voice, a word, a phrase, a little spontaneous something and it feels much more natural to me than closing off the stoma and forcing things. Maybe the BT will be the way to go. Time will tell.

A few post everything med stats after radiation he saw the med onc and rad onc doctors often, once a week. For at least 3 weeks post rad he continued going to the infusion unit for i.v. fluids 2x a week. He was weighed, blood drawn, continued to improve day by day. We're done with all of that now. It is such a relief to not be driving to the hospital every single day. He goes in for a new scan (not sure if it's a PET) 3 months out from end of radiation to check that all is clear. Crossing fingers that's the case it'll be a cycle of follow-up appts less and less frequently. We still have med equip at home, still need the suction device to keep the stoma/trachea clear although we do it less frequently now, usually once maybe twice per day. He still sleeps with the humidifying mask tube to machine. Hopefully we'll need it less over time but for now it's fine, just more things that have become a normal part of our routine. Our new normal.

He's very comfortable being out and about with stoma uncovered and uncapped. Doesn't bother him at all. He chooses not to use any of the devices that the surgeon had supplied, they get blocked too easily and breathing is most important. He'll wear a "mask" or bandana while working which is good, there is no natural filter after all. Need to protect the airway.

All in all he's doing good! Improving. We're doing good. Adapting. Adjusting. Life is good when you're alive. Thanks for visiting and thinking of us. xxoo Beth & James