Happy days amidst the chaos...

James, 2018, river at the cabin in NH

Sharing extremely good news in the midst of this crazy global pandemic.... we've been forging on with James' treatment at Dana Farber and CT imaging yesterday showed the cancer has melted away, normal structures are reappearing where the cancer had been (vessels etc) and most shockingly the bone that had been destroyed is regrowing. The neck CT looked almost *normal*. Our oncologist was beyond happy and honestly shocked by how good things look. He said James isn't going anywhere :^) so here we are, completely exhausted by life but with a positive outlook and renewed thoughts of the future. The kids are here at home with their loves and the house is energized. Things are still difficult, life is never really easy for any of us though, is it? We're readjusting to more new normals, feeding tube technology which may not go away, ongoing treatment which saps energy, new ways to manage the day to day. But we can also dream of tomorrows that we thought we wouldn't have. Maybe enjoy a few extra days up by the river in NH this summer, and the summer after that!!

The medical scoop... current treatment is dual Opdivo and Erbitux (this combination is what seems to have turned things around for us). We go every two weeks to Dana Farber for infusion and check progress with imaging every couple months. Our oncologist is Dr. Hanna, he is amazing and upbeat and oozes positivity. James is still 100% on the feeding tube for nutrition and hydration with nothing by mouth. He'd actually passed a barium swallow test at Brigham and Women's Hospital although they noted very little fluid passed. he was given the go-ahead to try thin liquids but when he did (sipping a little juice and coffee) the fluid collected and fistula that had completely healed reopened so we stopped everything again and it's all through the tube including crushed pills. Our dear CA cousin sent us an Amazon gift card and I splurged on a beautiful pill crusher... it's the little things in life that make all the difference in the day.

When I say above that CT looks almost *normal* the soft tissue/anatomical situation with his esophagus/trachea is not changed. He breaths through a stoma after removal of the larynx due to the laryngeal cancer. The trachea and esophagus are still separate entities and the esophagus does not currently and may not ever function for normal eating/drinking. We'll continue to discuss with the head/neck surgeon at Dana Farber. We just this past week requested and were delivered a tube feed pump so we could run the bulk of the liquid nutrition overnight rather than day time bolus feeds (standing holding a syringe as the food/water/crushed pills run through tube into stomach). We are hoping to boost the intake and nutrition while we sleep to build James' weight and strength. His current weight is 140lb.

We still have an elaborate medication schedule and keep a log so we don't lose track. Thank goodness for the VA covering all the meds 100% due to James' catastrophic status. I can't even being to imagine what the monthly expense would be if we were paying the % I pay through traditional health ins.

We'd given up completely on the voice prosthesis so communication is still written word, it totally works for us. I had put, on his phone, a text to speech app that he doesn't love. He will use it a little when we're driving at night, during the day he hands me the handwritten pad while I'm driving (shhhhh.... not the safest thing).

People have been asking how we're managing during the pandemic. We are masking ourselves and using hand sanitizer when out keeping distance as best we can (hopefully you are too!). The oncologist isn't overly concerned because James is on immunotherapy, not chemotherapy. Our current state of being isn't very different than what we've been living with for the past couple years. Social isolation is kind of our norm, I'm an introvert and with James' cancer issues he's become less social too (formerly quite an extrovert). Our lives for the past 2-3 years have been all about medical stress and medical management and appreciating our medical support team. We've lived on less than a shoestring since I'd lost the day job and started supporting us fully with beads (who knew that could be a thing) so our financial woes are nothing new and we have a fabulous loving support system of friends and family come to our rescue when the juggling of the bills become too much. We'd already been forced to figure out health insurance without a day job, discovered VA med benefits for James (thank goodness for that) and are in such a good place now with James' treatment at Dana Farber. What a miracle. We're doing surprising well.

James energy level ebbs and flows. He sleeps when he's tired and is up puttering around the house and yard when he's awake. I'm currently trying to find new interesting things to occupy mind and body when he's up, boredom can be an issue when I'm working.

Thank you to all family and friends who have sent love, prayers, healing energy and also tangible, financial, or other support. It's been a long few years. We have a ways to go as we continue treatment and hopefully build strength and energy (or at least stay on an even keel). Thank you as well to all the medical professionals keeping us going through this crazy pandemic, thanks to the essential workers, grocery workers, Mom's assisted living staff and anyone working to care for people who need a little extra. Thank you to the postal workers transporting my beads so I can continue to work and anyone and everyone working to maintain us and our fragile society. You are all our hero's.

Leaving you all with our thanks and love. All the positivity sent our way the past couple years has worked. Please keep it flowing into the world, we ALL need it these days. xxoo