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