Catching up with 3...2...1...

Today we go in for the third to last radiation treatment, hurrah! They switched it up to 39 treatments, why? we don't know but we'll take it so last rad is Thursday this week.

Last week when we went in expecting chemo when we met with med onc doc, Dr. W., he told us that there is no evidence that 3 vs 2 treatments is better in head/neck and he seemed a little concerned about how the rad if affecting James' skin. We were told that chemo amplifies the good and the bad of radiation. It also hit James really hard the first 2 times so without really solid recommendation that going forward with chemo 3 would be beneficial we opted out. Hurrah again!

James and Dr. W. decided that continuing with fluids is good at least this week through treatment. Important for kidney function amongst other things.

Skin is breaking down and surfaces are raw both in and out. We're using lot's of aquafor now and covering a bad spot with non-stick pad to protect. All is very sore. He's been doing his own cleaning in and around stoma and I wait to be called in as back up or when something feels deep. We still have all the suction equipment and James still wears the humidifying mask at night to try to keep things moist and moving.

James himself is moving slow. His appetite is WAY down. He's not keeping up with the 4 ensure a day. He's been trying tiny bites of things but between taste still affected by radiation and surfaces of throat (inner and outer) raw and sore swallowing hurts.

He's lost a boatload of weight and muscle mass but is happy he's gotten through it without having to go back on tube feed. We have cases and cases of the liquid goo if anyone is interested! I'll figure out somewhere to donate...

He still uses opiates for pain. It makes me nervous but we'll work on ditching them once treatment is done. We have other options to test including medical grade marijuana edibles thanks to an angel in the family with access. He knows it's there, I think he's tried it. He gets a little short with me when I talk about meds and edibles and food and lots of other things so I've been taking a slight step back. Trying not to push, too much, for now. We'll figure that out too once treatment is done. This week! Woohoo!

Good things. 3 days left! Coffee still tastes ok (although super hot is not good). 3 days left! We've got this.

This last weeks schedule... radiation today then fluids so in for 10:30 and if all goes well out around 2:30, radiation only tomorrow, radiation then fluids again Thursday, done!

We will continue on with med appts and already have something on the books with the surgeon in a couple weeks. We expect follow up with med onc and rad onc as well. The current relief will be not driving in to the hospital every single weekday. Not setting an alarm. Relaxing. Healing. I'm contemplating taking him away for a couple days, maybe to NH, fishing, we'll see. He needs a little something nice to think about and do, it's time to move on :^)

xxoo Beth and James

Death Mask

James asked me to go back into radiation oncology with him today so that I could take a photo of him in his "death mask". Yikes no wonder he needs an ativan before coming in for treatment. I'd need a couple and a shot of something on the side. What a guy! They said we can take the mask home with us when treatment is done. I'm thinking some kind of art installation or multimedia piece for the living room...

We went from radiation treatment to infusion for a couple bags of i.v. fluids. They'd completely forgotten about us with the first chemo treatment so I think they're over doing it playing catch up after the second with fluids 2x a week. It becomes a full day event arriving at 10 a.m. for rad onc then leaving infusion around 2. James is sitting watching The Chew, they're all eating some kind of delicious fruit tart cake thing. So interesting to me that this is the show he's chosen to watch when food actually isn't all that appealing to him. Once again I forgot to bring snacks so once again I visited the hospital cafeteria to scavenge. I found some cheese and grapes, carrots and celery for James that he's been nibbling and I had a bowl of hospital grade Pho, honestly not the worst thing I've eaten. James tried a tiny bit and made his face :^) sometimes I think I offer him bites of what I'm eating to just see the face when it doesn't taste good.

One more rad treatment this week then we have the weekend off. Hurrah! Then two more weeks of radiation and 1 more chemo treatment (again, so nice of them to add that on...) James has been maintaining his weight thanks to Ensure (should buy stock in that company) and weight gain protein powder smoothies. I think he's getting a little sick of the chocolate but the others just didn't taste as good. We bought a couple melons which he'd cut up and I think I'll keep containers of cut veg in the fridge too.

We saw the surgeon yesterday. I hadn't cleaned to stoma in the AM (oops) so things were a little (very) crusty and gooey. Sorry Dr. V!!! James and Dr. V just rolled with it, I was slightly horrified. Good for the young resident doing rounds with him to see it for what it is I guess :^) little reality check, are you sure you want to be an ENT?

I'd like to thank again everyone who'd sent gift cards for gas, grocery, amazon, etc. Timing has always been perfect to meet a need or two or five. You are all the best and we love you very much. We are doing well. He is doing well. The kids are around on/off to help and luckily my current self employment can flow around the med appointments. Life is good. James leaves you with a big thumbs up as they were rushing me out of the treatment room. Will try to update again soon! xxoo Beth and James

Chemo... again?

So this morning I thought we were going to hospital for radiation and maybe check in with Dr. R, rad onc, but on the way in James asked if I brought my laptop. Why? Fluids. Everything ran late. Still at hospital and he's hooked up to IV in infusion chair with ginger ale and peanut butter crackers, yum. We need to stop by grocery on the way home. I need s couple things and would love to find something that tastes good to James. Was a tough weekend with low appetite and everything tasting bad. On a slight upswing now, he's willing to taste/try again.

He logged in to his patient portal yesterday or maybe day before and low and behold there is another chemo scheduled, the nurse practitioner had mentioned something about chemo 3 when we were in for blood work and fluids Tuesday. We replied oh no, we're only scheduled for 2. That's not right. What the heck. Asked Dr R about it this AM and he said it's because James is tolerating treatment  so well. If he were more ill or had lost more weight they'd stop at 2. Ugh. Need to talk to med onc, Dr W., to see what's what.

James is doing okl. He has lost a little more weight. Was a little cranky the past couple days or maybe it's me being tense projecting cranky on him. I had to prep to meet with tax guy yesterday and was overly stressed. All is better now that taxes are done and James serms better today so probably all me. Need to relax. Need to breathe. All is well and good.

Looking at him now he's chilling in his chair watching a show. I'm sitting by the window contemplating closing my eyes. We're on week 5, we have 16 radiation left and one surprise chemo. If we move forward with that it's on the 17th. If we push back against it, it's not. Last day of radiation assuming we don't miss any appts is April 27.

Onwards and upwards!!

Xxoo