Footnote

Clinical trial infusion nurse told me end of day yesterday that they would not boot from trial if rash appears, they just try to catch and control early. Don't know where the irrational fear of mine stems that we would be removed from trial but great to know it's not the case! Phew.

No nausea today. Yay!

Always something...

September 2019 Flat Rocks Bartlett NH

Hard to believe this photo was taken a week or so ago which was less than a month out from the successful cervical spine surgery and start of Dana Farber clinical trial. I feel as though James is a cat with (hopefully way more than) 9 lives. This is the 3rd or maybe 4th instance of us (or maybe just me) thinking we're running out of options and then suddenly we're back in the game.

He's healed well from surgery. It's been almost 5 weeks, we go tomorrow to get the stitches out if they can find them. I feel like it's all healed over, crazy long time for stitches.

We're sitting at Dana Farber in the infusion center now getting his second clinical trial treatment, a combination therapy of the Opdivo (same as before) with an added magical targeted thing (will need to find the actual info to add in.... brain currently not working). With the first treatment side effects were minimal. He had some nausea the morning after but it could have been a massive frappe I'd made. I won't do that again. Oatmeal it will be.

When we were in NH we noticed a rash on his shoulder and chest. If treatment related may have been the end of it but after messaging the DF doc over the weekend with graphic photos he was certain it was Shingles so called in meds. We were told the Shingles can lie innate in your system then be triggered by something or other including some cancer treatments. I have to say I was so happy that's what it is (easy for me when I'm not dealing with the itchy mess) but better than being booted from the trial. Fun fact when you go for treatment and haven't been on the Shingles med for 72+ hours (started on Monday midday and today is Wednesday midday) they consider you contagious and tuck you away in a special room with air that vents directly outside instead of shuffling you from floor to floor. It's been a pretty relaxing day and I told the med staff we may claim shingles every time.

Anyhoo, we're still here plodding along. May go fishing again if I can get my bead work done in the next couple days. Finding balance (med/life/work) is difficult but we're doing our best. Hope you are too! xxoo Beth and James

Phone home

phone home

James' sister texted asking today if he'd started cracking jokes again. That's a good sign of how he's feeling so I asked and "phone home" was his response. The oxygen sensor light is perfect, took us a minute to get it but :^) he's back.

Today was a good day.

They took him off the "special k" (ketamine iv) and said he the drain should come out tomorrow. The two stipulations of coming home are off ketamine and drain removed. Yay. Crossing fingers and everything else that tomorrow will be the day.

He finally tried the protein shake that the nurse had recommended when first hospitalized and he loved it. Bummer that he waited so long into the hospitalization to test it out but good to know it's there for tomorrow. The other foods had been hit or miss, mostly miss. I told him he should order a couple shakes for breakfast. So many flavors, so little time.

I'm home to sleep tonight, still trying to catch up with a little work without much luck. It's been hard to focus and it'll be nice to be all in one place again. We'd love to get away for a little of James' birthday week to NH but won't stress about it. We'll see how he's feeling when he's home.

The kids have been such a huge help. Phoebe was with us at the hospital today which was really nice.  We did a couple quick errands on the way home then were pulled over by a nice young cop who said I didn't have my lights on. Yikes. Phoebe said it was my frazzled apologetic face that sent us on our way with a "you're all set, have a nice night."

Sander stayed home, he's been doing SO much around the house. It's been a complete disaster the past few years and he's digging in. I've told him what I don't know is missing won't be missed. So far I haven't missed a thing, we'll see if James does when he walks back through the door.

Yes, today was a good day. Hope your day was good too!

Thank heavens for sweet nurses, talented surgeons, kind policemen, wonderful children, and delicious shakes.

xxoo for now Beth & James

Love and support

I don't often talk about our support system. This photo of James post surgery eating a delicious cup of black raspberry ice cream that my sister Susan delivered feels like a fitting place to start.... thank you to ALL our family, on both sides, for having our backs and taking care of us when we're down. Phoebe and Aleksander (our two wonderful kids) we are so thankful you're with us keeping us sane and strong with love and laughter. To my beautiful mother and sisters who all help out at the drop of a pin whether or not I think we need the help. To all of James' wonderful siblings and family (he's one of eight or 11 or 40+ when we count the half-sibs, in-laws, out-laws, nieces, nephews, grands, etc) each Mellor is gifted with his angel of a Mom's giving/caring nature. All of our loving family, extended family, friends and neighbors pick us up mentally, financially, physically. Your kindness and generosity and support is hugely appreciated, we could not carry on without you. We love and appreciate you all so very much.

A quick medical update.... surgery went well thank goodness. James will be inpatient for a couple days then home healing or in NH fishing, we'll see how it goes and will try to keep you all updated. No news yet on whether he's made it into that clinical trial, too soon to know. Good news is that whether or not we do have options. One foot in front of the other hopefully with a smile on the face and ice cream in hand. Thanks! xxxoo Beth, James, Phoebe and Sander

Dana Farber

browsing hospital menu for puddings

Dana Farber has a phase 2 clinical trial in mind but needed to stabilize his cervical vertebrae which were quite damaged by cancer. Things move quickly here. First oncology consult about clinical trial was Wednesday, imaging same day showed damage to C1-2-3 resulting in surgical consult Thursday and admittance to hospital. He’s in surgery today (Friday) at Brigham and Women's in Boston and I’m waiting patiently. 

If all goes well with the surgery, the clinical trial sounds promising. It's a combination therapy, immunotherapy with something more targeted. We're waiting to see if he's accepted but in the meantime needed to stabilize the spine and then heal from the surgery. Infusions would start in a couple weeks.

Positive energy sent his/our way will be hugely appreciated.

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