Bloodwork hmm...

Bloodwork was off yesterday at Dana Farber, liver function number had shot up for some unknown reason so we were given the day off from treatment. We're holding statin and tylenol, bloodwork at the VA to check again next week then imaging and more bloodwork and hopefully back on track with treatment the week after.

Other than that we carry on.... James is enjoying a beer (via the feeding tube) and I'm switching between Ben & Jerry's Phish Food (thanks to Sander) and chocolate/ginger cookies that I'd made yesterday. Yum.

Short and sweet

Maybe I'll be able to keep up with posts if I keep it short :^)

Last night was a good night sleep for us both. The night before James was a big twitch, up walking around in and out of the house on off all night lights on then off (when I thought he was asleep) and the same with the TV volume. I didn't even know the sound would go up to 53, yikes, I normally have it hover around 2 or 3 or 4 at night. That was a shocker. Last night though I'd run to the Worcester glass shop to do a little work with Phoebe while Sander stayed home with James. James had already hooked himself up to the overnight feed at 8ish when I walked back into the house and slept pretty much through until 10 am this morning. A solid night sleep. He's having a good day so far today, his body definitely needed the rest. Mine too!

We've run morning errands making sure we're caught up at the oil co. for a new delivery scheduled. Gotta keep the tank full to keep James warm and showers hot, for me, constant struggle to get James to shower as it's difficult, not fun or relaxing with stoma and having to wear a protective device on the neck. The oil deliveries are one of the ways that friends/family assist (thank you love you) but this month I was able to cover it myself. Feels good to adult when cash is accessible, most other days I don't love being an adult. Today is also the day we switch a med patch so it's the day that I campaign morning to night for the showering of the James body. Sometimes I win. Sometimes I don't. We'll see what today brings.

Now I'm puttering with a few computer tasks (glass and business related), finalizing a couple orders, listings some beads online, responding to a couple Harlow Glass related enquiries, then digging in to torch and kiln work. Last nights errand to the Worcester glass shop included a brainstorming session with Phoebe to figure out presentation of the New Street glass stash. We're setting up our Harlow veiled cane inventory in a small space located at the Worcester Center for Crafts New Street Glass Studio (that's a mouthful) and while working out of that space we're also managing the New Street glass inventory. Much of that was donated to the studio and is a bit of a nightmare, trying to figure out what it is, what the retail cost is, what it'll sell for, how to label it for ease of sales. Brainstorm included a trip to Lowe's wandering thinking aha black duct tape silver sharpie marker Phoebe's beautiful handwriting. I'm finally looking forward to setting things up! Wish I could clone myself to actually give the New Street space the time it needs.

I hope your day is beautiful and healthy (mask, wash, sanitize) and also calm. It's my goal for today. Wish me luck! xxx Beth (and James)

Day by day.... by day by day....

Hi there, it's been so very long. Funny how in the midst of personal crisis you do your best to keep everyone informed and then when life reverts to whatever the new normal is with less exciting (good or bad) happenings you lose track of time, days, weeks, months pass and before you know it here we are.

We are well. James continues treatment. We could pause, the Oncologist had given us that option. But James doesn't have significant side effects and I question if we were to stop would something recur. I had the same feelings with my own treatment, when chemo and radiation are over, after the 10 years of Tamoxifen, what then. Will it come back? You're always a bit on edge. So we forge ahead with the maintenance treatment, bonus being we see the oncologist every two weeks and they tweak our world to keep James going.

We will always live with the physical repercussions of advanced laryngeal cancer. Managing the stoma, cleaning the crustiness of dry winter air, moisture, masking/bandana being my push but he prefers au naturale naked stoma (an issue during a pandemic). Feeding tube for liquid nutrition with the fistuala above the stoma healing then reappearing when James craves ice cream and tests swallowing again. Swallowing pushes whatever it is up through sinuses out nose reopens fistula then we manage that leaking and hopefully healing for weeks on end, I try to encourage James to taste then spit but, alas, not as fun. Crushing pills for the every 4 hours doses, worrying when James manages his own meds that he's doubled up on something or takes pills more frequently than he should so I'm always nervous and try to catch the pill hour myself. Remembering to change med patches, forgotten many times. Creams for skin issues, scalp, finger and toe nails which go wonky from treatment, forgetting to look at the toes then managing the red soreness while kicking myself for neglect. Managing the feeding tube site on his stomach, which is always leaking, with a goal is to keep the site dry and clean with dressings, forgetting to check the dressing then managing the repercussions of that. Alternating between antibiotic and prescription steroid creams, everywhere. The care giving / care assisting is a full time job, my own self care falls by the wayside. I lean heavily on CBD.

My current world of glass seems to take every minute that I'm not assisting James. I'll make beads until the wee hours of the morning then sleep in until it's time to start the next day. We are lucky that Sander (our son) lives at home and isn't working to give me/us support. I'm able to duck out once and a while, although James usually prefers to come with. I worry about Sander not moving forward with his own life. I worry about a lot these days. Phoebe (our daughter) has moved out with her sweet boyfriend. Sander's girlfriend would like him to move out with her too but is pushing for him to have a real job first. The kids both assist with the glass cane business (an off shoot of my glass bead making) but it's not quite self supporting as a business. Hopefully soon, time will tell. It will or it won't and until then I'll enjoy spending the time with the kids figuring it all out.

All that being said I am thankful too that in the midst of this crazy ongoing pandemic we are surviving. We were mentally prepared for it, we should run social isolation seminars. Pre-covid we hadn't been doing much socially. Gathering for meals isn't much fun for James, not surprisingly, and I have a lot of food guilt eating/enjoying food in front of him. Much easier to graze in the kitchen when he's tucked into the living room. Large crowds, complex conversation with multiple people can be hard for James, tricky to keep up when writing responses. So we had been staying home and still do, perfect for the pandemic. Our entertainment involves a variety of streaming channels. The living room TV is always on. When I don't want to hear whatever it is he's watching I'll use my headphones. Communication is still a combination of reading lips and written word when I struggle. We may look into an electrolarynx (device held against throat to speak), the voice prosthesis is unusable with current fistula issues. We'll see, it's not high on our to-do-list.

We're still sleeping dysfunctionally, he's comfortable on the recliner and I'm on the couch. He'll wake me up to assist with inserting/removing the feeding tube when he's up for pills so good for me to be close. The overnight food is managed by pump pushing in at a slow drip a high protein liquid. The dual food, day vs night, seem to be maintaining weight ok. He's at my prime weight and I'm, sadly, at his prime weight (back in the high school college days...) Wish we could hook up at night to transfer body fat along with the liquid food.

Boredom is an issue for James. He'll wander the house while I'm working. He'll hover. I'll suggest things but not much interests. He does putter through all the household which is lovely, laundry dishes and the like. It's a beautiful thing. I'd love to find him a new passion though. Carpentry isn't quite as easy although he'll still construct small things. Switching the old wallpaper for paint is ongoing in the house (we'll forever live in-progress), he's very good at fixing small mechanical things. If you have a need you're welcome to drop it by to see if he could bring it back to life. I wish we were near a river, near the river, for him to fish on/off all day. That is the one time I truly see him happy. Unfortunately it's only a few weeks in the summertime. I'd love to find something locally for Spring and Fall or maybe realize my dream of having a small mobile studio/camper so that I can make beads on the road and he can fish. If anyone has a small gutted trailer that has an intact shell give a shout :^) that would be a fun project for James to play!

Anyhooooo.... here we are, still kicking. Contemplating what's next while we exist in the present. I hope that your world is calm and happy and healthy. Keep on keeping on, mask up, we will too. I'll try to write more often. Until then xxxoo Beth and James

Happy days amidst the chaos...

James, 2018, river at the cabin in NH

Sharing extremely good news in the midst of this crazy global pandemic.... we've been forging on with James' treatment at Dana Farber and CT imaging yesterday showed the cancer has melted away, normal structures are reappearing where the cancer had been (vessels etc) and most shockingly the bone that had been destroyed is regrowing. The neck CT looked almost *normal*. Our oncologist was beyond happy and honestly shocked by how good things look. He said James isn't going anywhere :^) so here we are, completely exhausted by life but with a positive outlook and renewed thoughts of the future. The kids are here at home with their loves and the house is energized. Things are still difficult, life is never really easy for any of us though, is it? We're readjusting to more new normals, feeding tube technology which may not go away, ongoing treatment which saps energy, new ways to manage the day to day. But we can also dream of tomorrows that we thought we wouldn't have. Maybe enjoy a few extra days up by the river in NH this summer, and the summer after that!!

The medical scoop... current treatment is dual Opdivo and Erbitux (this combination is what seems to have turned things around for us). We go every two weeks to Dana Farber for infusion and check progress with imaging every couple months. Our oncologist is Dr. Hanna, he is amazing and upbeat and oozes positivity. James is still 100% on the feeding tube for nutrition and hydration with nothing by mouth. He'd actually passed a barium swallow test at Brigham and Women's Hospital although they noted very little fluid passed. he was given the go-ahead to try thin liquids but when he did (sipping a little juice and coffee) the fluid collected and fistula that had completely healed reopened so we stopped everything again and it's all through the tube including crushed pills. Our dear CA cousin sent us an Amazon gift card and I splurged on a beautiful pill crusher... it's the little things in life that make all the difference in the day.

When I say above that CT looks almost *normal* the soft tissue/anatomical situation with his esophagus/trachea is not changed. He breaths through a stoma after removal of the larynx due to the laryngeal cancer. The trachea and esophagus are still separate entities and the esophagus does not currently and may not ever function for normal eating/drinking. We'll continue to discuss with the head/neck surgeon at Dana Farber. We just this past week requested and were delivered a tube feed pump so we could run the bulk of the liquid nutrition overnight rather than day time bolus feeds (standing holding a syringe as the food/water/crushed pills run through tube into stomach). We are hoping to boost the intake and nutrition while we sleep to build James' weight and strength. His current weight is 140lb.

We still have an elaborate medication schedule and keep a log so we don't lose track. Thank goodness for the VA covering all the meds 100% due to James' catastrophic status. I can't even being to imagine what the monthly expense would be if we were paying the % I pay through traditional health ins.

We'd given up completely on the voice prosthesis so communication is still written word, it totally works for us. I had put, on his phone, a text to speech app that he doesn't love. He will use it a little when we're driving at night, during the day he hands me the handwritten pad while I'm driving (shhhhh.... not the safest thing).

People have been asking how we're managing during the pandemic. We are masking ourselves and using hand sanitizer when out keeping distance as best we can (hopefully you are too!). The oncologist isn't overly concerned because James is on immunotherapy, not chemotherapy. Our current state of being isn't very different than what we've been living with for the past couple years. Social isolation is kind of our norm, I'm an introvert and with James' cancer issues he's become less social too (formerly quite an extrovert). Our lives for the past 2-3 years have been all about medical stress and medical management and appreciating our medical support team. We've lived on less than a shoestring since I'd lost the day job and started supporting us fully with beads (who knew that could be a thing) so our financial woes are nothing new and we have a fabulous loving support system of friends and family come to our rescue when the juggling of the bills become too much. We'd already been forced to figure out health insurance without a day job, discovered VA med benefits for James (thank goodness for that) and are in such a good place now with James' treatment at Dana Farber. What a miracle. We're doing surprising well.

James energy level ebbs and flows. He sleeps when he's tired and is up puttering around the house and yard when he's awake. I'm currently trying to find new interesting things to occupy mind and body when he's up, boredom can be an issue when I'm working.

Thank you to all family and friends who have sent love, prayers, healing energy and also tangible, financial, or other support. It's been a long few years. We have a ways to go as we continue treatment and hopefully build strength and energy (or at least stay on an even keel). Thank you as well to all the medical professionals keeping us going through this crazy pandemic, thanks to the essential workers, grocery workers, Mom's assisted living staff and anyone working to care for people who need a little extra. Thank you to the postal workers transporting my beads so I can continue to work and anyone and everyone working to maintain us and our fragile society. You are all our hero's.

Leaving you all with our thanks and love. All the positivity sent our way the past couple years has worked. Please keep it flowing into the world, we ALL need it these days. xxoo

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

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!