New year new update

It's been a while since I've posted. I'd love to say that it's been uneventful. I think I've been waiting for some positive news but we've been going sideways or a bit backwards. Hard to believe it's been two years since the original surgeries and at this moment we're back where we started, inpatient at UMass Medical Center with hopeful release today.

The Dana Farber (DF) clinical trial, unfortunately, didn't work out for James. We're still going to DF but they've switched him to a more traditional combined treatment of Opdivo and Erbitux. Final clinical trial imaging had shown that the clinical trial med wasn't stopping progress of the tumor, it's progressed about as high as it can go in the cervical spine. Hopefully this new combined therapy will slow or stop things, we're scheduled for imaging later this month to check.

Opdivo is the immunotherapy that James had been receiving for a full year at UMass Medical (our local hospital) and also as combined treatment during the clinical trial stint at DF. They feel Opdivo is a successful treatment for us because it's prolonged life, they consider James a success because he's still with us two years out. Erbitux (Cetuximab) is an epidermal growth factor receptor (EGFR) inhibitor and we were told his tumor is "lit up" with EGFR so they hope it will be effective in stopping progress. We could have received Erbitux at UMass Medical (our local hospital), it was actually one of the treatments they'd recommended before we went to the DF referral, but the combined treatment of Opdivo and Erbitux can only be given at DF. Well worth the drive into Boston every two weeks if it halts cancer growth. He did have a reaction to the Erbitux at first treatment, uncontrolled shivering, increased blood pressure, light fever. Nursing staff rushed in pretty quickly to manage the issue and they were able to restart treatment at a slower pace. Since then they've been running meds at half speed and pretreating with a couple additional meds to prohibit another reaction. Imaging will show whether this treatment path is improving our situation although I'd be happy with a holding pattern too.

So why are we in the hospital? (skip this paragraph if you struggle with the med details) A couple nights ago I noticed a swollen bump above James' stoma when cleaning/suctioning, it looked a bit sore so I put a little antibiotic on it thinking I'd ask the doctors. That night he was eating some pudding and it started flowing down his neck into stoma. First thought was the prosthetic was leaking again which would have been an easy fix. Not prosthetic issue, the bump on the neck had opened between skin to esophagus and whatever James ate/drank was coming out and flowing down into his stoma/lungs, not good. We cleaned up and contemplated things. He was unable to eat or drink anything. He was due for meds and couldn't take them. It was 11 at night and options were limited. We discussed and decided whatever was going on it was time for a feeding tube. We drove to the UMass ER as we didn't see waiting until AM as a viable option. Luckily it was a fairly quiet night and they brought him in fairly quickly. The neck issue is a fistula (opening) between outer skin and esophagus. 

We were in the ER for close to 24 hours before being admitted. Long delay was due to their desire for ENT surgeon involvement so field trip to ENT clinic mid morning then back to ER where we met with general surgeon who agreed yes feeding tube is needed and quickly. James was admitted to the hospital surgical ward and surgery was scheduled for the next morning (two days ago as I type this). I saw James tucked in to the ward and went home to catch a few hours sleep, big mistake. The ER hadn't communicated well with the surgical ward nurses. They didn't keep up with pain meds, didn't give him ativan normally taken every 8 hours, didn't clean stoma. The meds were not translated well from ER and although I'd spoken to nursing staff communication was lost with doctors who give the med orders. The stoma issue is a new protocol at UMass where they don't do deep suction cleaning (what the heck). I came in at 6 am yesterday morning and James was frantic. We were brought down to the pre-surgical unit where I pretty much lost it on everyone who came within 10 feet. It wasn't pretty. I asked to be set up with suction/catheter and did a quick clean in pre-op so he could breathe. You can't imagine how much gunk I cleared. He went in to surgery where they assured me they'd manage his pain and anxiety. When the surgeon found me to say surgery was successful he and I had long conversations discussing level of care needed which may be difficult on the ward floor but he's not dire enough for ICU. I contemplated transfer to Brigham and Women's in Boston and was messaging back/forth with the Dana Farber oncologist (probably annoying the hell out of him). In the end, post-op, James was transferred back to the surgical floor. 

On the upswing... The gastric feeding tube placement was successful. The general surgeon was great, the surgical residents have been giving us more attention and are coming in for nighttime dressing changes of the fistula (needs to be redressed every 2 hours or so if excessive leakage). There must have been conversations with the nursing and care staff in the ward because they have been very attentive to his needs. However respiratory therapy seems to be overstretched/unavailable and there's this new protocol in place where they don't do deep suction cleaning. Makes no sense to us because we learned it 2 years ago in this very hospital from all the respiratory therapists. Along with the dressing change on the fistula every couple hours the stoma also need to be cleaned/cleared. James is not surprisingly uncomfortable being left here alone so I've moved in to the room. The nurses found me a recliner and I'm camping out. I took a quick trip home yesterday to shower and change clothes as I was feeling pretty ripe. We had a bevy of Mellor sibling love last night in the room and my sister and Mom took me out for a quick bit. I'm looking forward to us being in our own house again where I can multitask James' care with my work (things have been in limbo) and also where we can both sleep! Crazy how they keep you awake here and as soon as you nod off something or someone or some sound happens to wake you back up again. Not a good healing environment.

All of the tube feed supplies are being delivered today so we'll be set at home. It'll add a new dimension to the day but nothing we haven't managed before. The VA was going to be delayed so the secondary insurance is kicking in to set us up. The nurse case manager here has been lovely as is our current day nurse. Given all the kerfuffle of that first nightmare night and the lack respiratory support the overall care and support has been good. We just need sleep. And control. Time to go home.

Moving forward we have immunotherapy Wednesday this week. Treatment has been delayed by holidays and hospitalization, normally every two weeks and we're close to a month out now which makes me twitchy. Next week we have a consult with a DF head/neck surgeon about fistula, the day after that we come back to UMass for tube feed surgery follow-up. We hope fistula repair is possible. Even if we decide to keep the feeding tube for ease of nutrition it'd be nice to eventually be able to swallow a little something, enjoy a sip of soup, cup of coffee, bit of beer.

Thank goodness the kids are with us still for support, love, and care for us each other and all the creatures of the house while we're in hospital. This hasn't been easy for them, I'm sorry life is so hard but happy we have each other.

I think that's about it. Our current situation. Hope you're well :^) thanks for thinking of us and sending whatever good vibes you have to spare. xxxoo Beth and James

Still kicking

James update, as always sorry for the delay! All seems good with the new clinical trial. No extreme side effects. Treatment 4 was today. Biopsy scheduled for next week and CT before treatment 5. We should know more after biopsy and imaging.

Head is still attached to body thanks to successful spinal fusion. James likes to call the pre-surgery his "bobble-head" days. We came very close to full paralysis so shouldn't joke... too much...

We were at Dana Farber for the day today, long day due to my screwing up start time = hour early arrival then everything else ran late. I'm exhausted but James is energized and wanted to do a front brake job on my old beast of a car so here I sit watching him work. Pretty crazy given his current prognosis. The immunotherapy clinical trial must be doing good things. Crossing everything.

Teeth... they're all falling out or breaking off or both so we've started the process of removing them root to stem. First block of 4 upper taken last week and it wasn't fun. Lotsa antibiotics, cold packs then heat packs, bleeding, swelling. We see the oral surgeon next week for follow up and to plan the next attack.

Luckily he doesn't need to chew because food needs to be pureed texture for ease of swallow. Anything with pieces catches, blocks, and sends all else up into the sinuses. We'd like to avoid that thank you very much. Current diet is the calorie rich soupy oatmeal (pulverized in the food processor to powder) cooked with butter, cream, GNC vanilla weight gain protein powder which sweetens just enough. Midday frappe with coffee, high protein chocolate Ensure (thanks to the VA who send cases),  coffee ice cream and the GNC protein powder, mmm... pretty delish. His favorite dinner is a rich dense butternut squash bisque his sweet sister makes (thank you!) which I take and make into a crustless pie by whisking in a bunch of eggs and baking in a buttered pie plate. He loves a warm slice with a big spoonful of Stoneyfield whole milk vanilla yogurt on the side. He'll also eat as soup but the pie is his favorite. Surprisingly that smooth custardy crustless texture is ok. Favorite snacks are cherry italian ice, strawberry ice cream, choc/vanilla ice cream, butterscotch pudding, apple juice, coffee with cream/sugar. Weight is up to 148 naked although dropped a couple lbs with tooth drama so may flux a bit as we continue on.

Pills are also impossible to swallow so all are crushed and mixed into yogurt. I can only imagine the deliciousness. Does the trick though. Thank you Stoneyfield.

He's working again as he likes on days he feels well which seems often. Driving a bit although I'm still behind the wheel when we're together which is most often. Our schedule is dysfunctional. Sleep is eclectic. But we're here hanging in. Kids are a huge support as is family. Thank you all :^) love to all. He's done with brakes and I'm ready for a little sleep. Somedays full exhaustion hits me and this is one of those days (he's still going strong). xxoo Beth and James too!

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.