Wheels are turning

The VA just called, they're contacting Dana Farber to approve the referral. Dana Farber just called, they have the referral from the oncologist and will discuss the case and call to set up an appointment. Wheels are turning. Update... Dana Farber appt is August 14. We just had another immunotherapy treatment. James is honestly doing quite well!

130.7 naked

James with milkweed, July 2019

James was pretty excited to show me the title # this morning. We've had a rough July. All through the immunotherapy treatment with imaging every 3-4 months we were told there was no new cancer movement/growth and all seemed good which may have been why I hadn't updated this blog. All seemed good, no news is good news, now unfortunately we have news...

The past month or so the pain has increased again. He's also continuing to struggle swallowing pills. We can cut up most and get by. The coated long-acting pain pill was a big problem. We were working with palliative care and our oncologists to figure it out. We've switched to a pain patch and that seems to be working thank heavens.

Secondary to that is we were thinking there was "fluid" building up in his neck per the CT scan results/reading. They wanted us to follow up with an ultrasound and MRI to figure out what this fluid was. They wanted us to follow up with the surgeon who would be responsible for managing the fluid.

We met with the surgeon prior to MRI and ultrasound. We asked about the fluid. He looked at the recent CT scan then the previous two CT scans (6-8 month span of imaging). Not fluid. Cancer has been moving/growing. Radiologists reading the CT scans completely missed it. Immunotherapy hasn't been stopping it, maybe slowing, not stopping. Should we have known 4-6 months ago? Yes. I've lost all faith in UMass Radiology and will let them know. Small stick incident with my foot backs up disillusionment.

The surgeon said make the most of your time, go fishing, maybe fish in July not wait til August. We met with the oncologist again, he called us after talking to the surgeon. Surgeon is concerned new cancer surrounds vessel. Oncologist is concerned new cancer is very near spine. We are concerned about it all.

We've been given three options at UMass two of which are chemo (I don't know that James would do chemo again) and one is some targeted thing. While we're not ruling the target treatment out the oncologist also said that Dana Farber may have more experimental treatment options. He's referring us to Dana Farber, he suggests we see them within the next two weeks. We're getting copies of all of the imaging, the oncologist is submitting the referral and transferring James' med history, the VA is working on approving the referral. The VA is currently covering 100% of James med costs. Thank goodness for the VA.

So our news is not good but we'll keep moving forward. Thanks to icecream season James is back up to 130.7 lbs naked (he was hovering right around 120 when we met with the surgeon which wasn't great). Current food is a couple bowls of oatmeal (with weight gain protein powder, butter and half/half) every AM, sporadic ensure/banana/protein frappes when I can get him to drink them, lot's of ice cream, italian ice, frozen fruit treats, soups for dinner current fave is cream of chicken. I'd love to find other rich smooth cream soups, a rich smooth beef soup would be nice. Chunky food is all still catching and sticking in his throat similar to full pills. Pills that we can cut get cut into 1/4 or 1/6 bits. Drinks are apple juice, coffee, beer. My gauge of how he's feeling is a beer gauge. If he drinks a beer in the afternoon I know it's a good day :^) little vitamin B.

He does love puttering out in the yard. He's got wild milkweed that he checks a few times a day for monarch activity. He has the tiniest of ponds with filter and fountain and shiners. He has a few gardens going with all kinds of lovely things. He caters to the wildflowers more than worry about grass. Given his current status, he's doing pretty well. Sleep is back downstairs, he's on the recliner and I'm on the couch. Sometimes brain won't sleep and he'll be vacuuming at 1 a.m. all good because I'm ok being up making the beads. My personal goal is to keep pain managed so he can do whatever he can do every day. Keep moving forward.

Thanks for checking in. We are sorry the news isn't better. Thanks for thinking of us/him and whatever positive healing vibes you can send. Enjoy your day every day. xxoo Beth and James