No news is good news! So sorry for the month's long delay between posts. I think we've fallen back into living life...
So far so good with the immunotherapy. James has been holding steady, feeling less anxiety, resting when weary, rebuilding a bit of strength (I still ask him to open jars for me) and maintaining weight. Food continues to be tricky. Two of the weight gain smoothies per day plus whatever other "normal" food he can swallow works well to stay at 130 lbs. It would be nice if it went up but ok if it stays as is.
The surgeon is talking about doing the day surgery procedure to expand space to make it easier for James to swallow. Crossing fingers it'll happen. He's been craving "real" food and I have such guilt eating things in front of him that he can't. We graze and snack.
We just finished the 6th treatment yesterday. He's feeling a little flu-ish today which is normal. Achy and tired although just left to do a minor repair on my old beast of a car. He doesn't stop for much. We'll go for imaging before the next treatment although they said he's doing so well there's almost no need, they'd continue on with it no matter what the imaging shows (so they say).
James is leaving to do things without me more often and I'll pop out on my own too. We do still run most errands together and I go to all the med appointments but we're not quite as joined at the hip. He bartered with an older gentleman who was selling his house, worked for his snowblower. So now we have a snowblower and he's been out doing storm clean up. Our son stayed home for the last big heavy snow to assist. James tried to show me how to run it but I've decided I'm a shoveler at heart.
We're still not set up with the health insurance through the state retirement board. I need to resubmit the paperwork (the first set had been lost in the system) and I just haven't gotten around to it. It can't kick in until my wee pension starts and that'll take a bit anyway. I don't feel such a huge push for James with the health ins because the VA has been covering everything and will continue to do so. It's me and the kids that will enjoy that benefit. Although it'll be nice to know we can make snap medical decisions though without the long VA wait when we have the supplemental set up. Also nice that the kids will be covered again on a family policy until they're 26.
One recent negative is that a couple of James' teeth have broken off due to the head/neck radiation. We've gone to a VA dentist who referred James to an oral surgeon. James' teeth have never been great and the VA would like to extract them all. We're pushing back, it feels very extreme and would be life-changing as they are talking about not fitting replacement/dentures soon or ever. Hard enough losing speech and having the physical change of stoma. If there is a serious infection we can contemplate it but for now, we'll go to the consult, gather information, and hopefully leave as is.
A few things that people used to gift us are covered by VA now. The VA sends us 4 cases each month of the high protein ensure that I use in the twice-daily shakes and I submit for a refill as a med prescription. The lidocaine ointment is supplied through the pharmacy. This winter I've been using lidocaine on both his neck and lower back. Maybe we won't go back to the Biofreeze or maybe it'll just come into play when the weather is hot. Whatever he'd like we'll do. The VA also supplies gauze, cotton swabs, saline, etc, for cleaning the stoma (things I used to buy with Amazon Gift Cards).
We do still use/buy the GNC vanilla weight gain protein powder but can get it in massive bulk bags which last forever. Thanks to the young GNC guy who shared that secret! The VA nutritionist suggested alternate protein sources but James struggles with taste (on top of the swallowing issues) so I really don't want to mess with a good thing. I'll stick with the GNC product.
I've become a vanilla ice cream connoisseur shopping for the best low cost. We go through a few half gallons a week making the shakes (1/2 banana, 2 small scoops GNC protein powder, huge scoop or couple small vanilla ice cream, high protein chocolate ensure, a dash of milk, a drizzle of Hershey's chocolate syrup). Hood Golden Vanilla is my favorite ice cream, easy to scoop and very creamy.
I've had a couple recent incidences of spontaneous tears when going to pay the oil bill or electric bill thanks to loved ones who have sent gifts to the accounts. It's like I'm in the middle of a huge group hug, unexpected and hugely appreciated. We send thanks and love to you all.
Our current running "joke" as he works his way through his bucket list of projects on the house is that I'll keep adding to the list so that he'll have to stick around. I think it's working! Looks like thanks to the miracle of immunotherapy he'll be with us for a while yet :^)
Hugs from us to you. xxoo Beth & James
