Soldier on James

It is so good to be home and James is alternating between resting and rallying. I am enjoying the normalcy of the chaos of the house.

We had a long difficult day going in to Dana Farber (DF) for treatment Wednesday this week. The fistula was still very weepy, we'd bandaged it but it wasn't holding. We were 2-3 days out from release from hospital and still getting a handle on the med schedule and tube feed. We brought all the supplies with us (tube feed, med box, suction equip, our medical world). I was stressed, James was sore and exhausted. We didn't receive the best news from the oncologist (we may know more when we meet with the surgeon Monday Dec 13 so I'll hold off on sharing). Even though news wasn't great oncologist is fabulous and nurses are angels. We made it through the treatment. The ride home was not fun with rush hour traffic, James bandage leaking, pulling it off, driving with it open with James monitoring/catching issues. It was a long few hours.

Because we had so many issues bandaging we're opting to leave the fistula open and feel like it's weeping/leaking less. It seems easier to maintain and James has been manning the suction equipment himself for trachea, stoma, and fistula. I barely help at all although I'm still on standby and flutter around him when he sleeps. I keep the med and feed schedule and manage the bolus feeds/meds (crushed pills are also through PEG tube with water). We're sticking close to home as it feels complex leaving the house. Maybe it'll get easier once the fistula is resolved, hopefully the fistula will be resolved. Wondering if it's healing (weeping/leaking less) because he's not using his throat/esophagus at all for food/drink or because we're leaving it open. Who knows but nice intensity of care has lessened.

James is feeling pretty well now that he has a steady food intake with the PEG tube (PEG tube via percutaneous endoscopic gastrostomy, an endoscopic medical procedure in which a PEG tube is passed into the stomach through the abdominal wall). We have box on box of delicious Jevity 1.5, supply via secondary insurance, it's free until June because we'd met our medical deductible for the year, nice. I'll still look into switching over to VA which is always covered 100% but haven't touched base with them yet.

We were sent home with a bolus gravity feed schedule which we're already deviating from. He's supposed to have 5-6 containers a day and the schedule was 1 then 2 then 2 then 1 every four hours through the day but the two at once was too much so we're going with 1 container when he feels hungry which still ends up being the 5-6 per day. It's a gravity feed set up with large syringe (no push, just letting it flow into stomach) which also feels more gentle/natural. I feel like he's regaining strength and energy with the regular nutrition. He rests/sleeps on and off through the day. Seems to have an energy spurt when I sit to make beads at night. Last night he was up vacuuming and doing laundry midnight to 2 am. Gotta make hay when the sun shines, or vacuum when the body feels like moving.

He still has the new stomach pain with PEG tube insertion surgery which may take a while to resolve. Perk is that the neck pain isn't bothering him as much with the stomach pain and the back pain that was a lifetime ago has taken third seat to stomach and neck. James is settled no in a new high tech recliner that his sweet sister and bro-in-law found, delivered, and installed last night. He's sound asleep. It's electronic able to raise/lower legs independently from back which can go into full recline. It'll also lift/tip to help stand up. James is so used to the old manual recliner, he's still crawling in and out of this one. I'm dying to push the button to lower the back while he sleeps so his head isn't tipping forward but don't want to wake him up. We'll have a little learning curve with use.

The kids are such a help. Running all the errands. Winding and restarting the town clock when we'd lost track. Just being around for moral support and normalcy in the house.

I'd also like to thank our sometimes anonymous loves who've sent a little $ for heat or paid off for our power. The loves who drop off gifts of snacks (for me and the kiddos), gifts cards for grocery or gas, cash for random bills and whatever else has come up. We are surrounded by kindness and generosity and I'm constantly on the edge of being a puddle on the floor not from the stress of this *&^(+ cancer but from the kindness of our friends and family. We are blessed. I am thankful. We feel loved. We send love back to you. Thanks for being in it with us. We appreciate you! xxxoo Beth and James

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