Difficult to hear

We met with the radiation oncologist, Dr R, who told us the lymph node biopsy is positive for cancer. Neither surgery or radiation are options with the recurrence. Dr R recommended we see the medical oncologist, Dr W, who was able to schedule us the next day. Unfortunately chemo also isn't possible because the cancer had recurred so quickly after the last round.

Dr W would like to start James on "Opdivo" immunotherapy and the first infusion is next Friday. There is a slim chance the immunotherapy will hold cancer growth at bay or even reduce. The med onc is a "realist" as James would say, so not overly optimistic. James is the same, I'm opting to be the optimist. We're been scheduled with a palliative care person on Monday who'll assist with pain management amongst other things. The first Opdivo injection will be on Friday and I believe it's every 4-weeks. Best case scenario with Opdivo is it'll reduce cancer to the point where it could be removed surgically or if it holds/reduces cancer and surgery still isn't doable that James could stay on it as long as possible while holding cancer at bay. I will be thinking the good thoughts hoping this new treatment will work. I hope you send your positive energy and thoughts our way too.

For short term relief to symptoms the radiation oncologist has put James on a secondary/increased dose of opiate which we can overlap with the lower dose to help manage the pain. Also a steroid to help with appetite and energy. He's feeling SO much better with the new meds, pain is fairly well controlled. He's able to hold head up again with pain level a constant 5 instead of 10. Today he wound the clock part way then came home and rebuilt/repainted the shed doors. I was drying a bunch of basil in the oven and he said he was craving manicotti. What I would have given to be able to make it but didn't have ricotta or necessary noodles. I did have a little leftover sauce and mozz/parm to pull together a quick english muffin basil "pizza" for similar taste. He graciously said it was good. Cozy Shack tapioca pudding for dessert. Love that he's enjoying eating again even if it's just a tiny bit.

Not so good update

It's been forever since I'd posted. Things were moving forward. We were comfortable with our new way of being and James was regaining strength. They sent us to physical therapy to deal with neck pain assuming it was muscle related and began working towards voice with prosthesis. Then....

We had the follow-up PET scan. There are two spots of concern. One at the left upper paratracheal lymph node and the other they'd noted at the left tonsil but the surgeon believes it to be behind the tonsil either lymph or muscle related. The surgeon believes this is the cause of the severe neck pain.

We've had a day surgery biopsy of the paratracheal lymph last week and also an MRI of head, neck, orbit of eyes as another new symptom may have something to do with his eyes. From what they'd told us the PET scan isn't the best for the head in general because the entire thing lights up due to activity hence the follow-up MRI.

We see the radiation oncologist tomorrow who will hopefully have results of the two tests for us. We're stressed. James is extremely anxious. I've told family and a few others on an as needed basis but am holding off on any social media update until we have more information. I thought this may be a good way to lightly get the word out to folks who may be keeping an eye on the blog specifically for James info.

Beyond all the bad news we did manage to get away to a family cabin for James' 55th birthday in late August. The weather was nice and he got a little fishing in. I'd love to get him back up there if we can before the weather cools. It was amazing to see how much more relaxed he was enjoying the outdoors, river, walking the trails and fishing. Maybe it'll be doable, there's still time....

Sending love to you all and thank you for thinking of us. xxoo Beth & James

Little Things

Stepping out into the wild today with James and thought it was the perfect photo for a mini update.

We'd gone to the surgeon's office to discuss problem with liquids passing through prosthesis. Found out the valve can/will break down and it's a known/common problem. Good to know! They swopped it out and all is good. Doesn't necessarily solve the problem of food sticking up at the top of his throat when swallowing but he's working around that by trying not to eat problem foods.

James has been dealing with severe pain at the back of his neck. We wonder if the back side muscles are maybe strained by doing all the work. I'm going to call the surgeons office today to check in and ask what can be done. If nothing may ask if massage or chiropractic appt would make sense? I'll update when we know.

Other than all of that... overall he is well, we are happy, life is good. Weight needs to be gained (him not me) muscles need to be rebuilt, finding tasty food is tricky which directly impacts weight/muscle gain. Yesterday we went to a 4th of July family cookout and he did enjoy a find a few things to nibble including a strawberry torte. Yum!

Voice is still quiet but that's ok, taking it day by day and using pen/paper and lip reading in the meantime. The paper and pen come out less and less for me but when we go out anywhere it's still a necessity. I loaded a text/voice app on his phone but it doesn't interest him. I've always been the tech head while he prefers old school written word. Whatever we do it seems to be working. Even larger group gatherings for the holiday felt easier this time although he'll still stand off by self or in this instance suggest to me a ride/wander into the wild. The beaver pond we visited was truly beautiful!

Thanks for thinking of us! Hugs to all :^)

How time flies...

James, Footbridge Beach, Ogunquit, ME, 6/6/18

I can't believe it's been a month and a half since the last day of radiation and I can't believe I completely dropped the ball in updating you all. I am so sorry. We are well. James is happy. We are moving on...

By the end of radiation everything was pretty raw. I had Gordon Ramsey in my brain screaming (you'd have to be a fan of Hell's Kitchen to understand) every time I assisted with suctioning, cleaning, inside, outside, everywhere. The skin had completely broken down. The neck was like the worst sunburn ever blistering badly around the sides. (Adding in here that James has a photo on his phone of his neck and stoma the last week of rad. He's offering to give it to me to post but I'm going to save you all the shared pain. Yikes.) The radiation oncologist told us that we would be shocked at how quickly it would heal, outside in a week or two although interior walls would take much longer. He was so right. By the second week his neck and exterior of stoma looked great. The interior of esophagus and trachea are better but still painful and bleed at times. He feels like it may still be a bit swollen. The rad onc, Dr. R., said it could take 6 months or so, yikes. There is still residual pain, bad at times, from the surgery. All that being said he's really doing amazingly well. He's managing the pain with a little help. He's figuring out which foods work and which don't (next paragraph) and is becoming active again so life is good.

Weight is still down but inching up day by day. I'm going to buy stock in Kozy Shack pudding co. The new favorite is the Tapioca. I still buy the rice because I like to have a spoonful now and again. Maybe it's a family addiction. He goes through at least 1 large tub a day. I stopped buying the wee little containers, such a tease! I think the pudding is nice for him because he can swallow it so easily. I've told him he can't live on Kozy Shack pudding. He just looked at me now from across the table with the tub and a spoon and without prompting said, "I could live on this." Absolutely perfect timing. No idea that's exactly what I was writing about.

Anyhow the new food conundrum is that things are sticking "up" at the back of his mouth / top of his esophagus before going down then he can't seem to dislodge it and it becomes painful. Ugh. We seriously need to figure it out. It's happened with dense meats (chicken, pork, etc) although ground beef seemed ok, breads that aren't toasted, things we could avoid. But then a pill stuck. And then rice stuck. What next. I'm going to call Dr. V.'s office (the surgeon) to see if they have any ideas or can send us to a someone who can help relearn swallowing with the new anatomy he's got going on.

Good news is that I'm becoming very adept at reading lips. We're communicating fairly well these days without having him write too much down. I have to have him repeat things sometimes (lot's of times) but he (usually) doesn't get frustrated with me. There are times when it's hard still but not as often as early on. He does best 1:1. Crowds are hard. Conversation moves at a slower pace and honestly that's ok. We're adapting. When we're at gatherings and there are groups and everyone is talking at once it's difficult and he'll find a quieter spot for focused conversation with a person or two. Eventually when everything heals internally maybe the voice prosthesis will come in to play and if so that'll make group situations easier. I think I had mentioned "burp talking" (BT) in an earlier post? He still will do that once and a while, not often, and it surprises me in a good way. So fun to hear a voice, a word, a phrase, a little spontaneous something and it feels much more natural to me than closing off the stoma and forcing things. Maybe the BT will be the way to go. Time will tell.

A few post everything med stats after radiation he saw the med onc and rad onc doctors often, once a week. For at least 3 weeks post rad he continued going to the infusion unit for i.v. fluids 2x a week. He was weighed, blood drawn, continued to improve day by day. We're done with all of that now. It is such a relief to not be driving to the hospital every single day. He goes in for a new scan (not sure if it's a PET) 3 months out from end of radiation to check that all is clear. Crossing fingers that's the case it'll be a cycle of follow-up appts less and less frequently. We still have med equip at home, still need the suction device to keep the stoma/trachea clear although we do it less frequently now, usually once maybe twice per day. He still sleeps with the humidifying mask tube to machine. Hopefully we'll need it less over time but for now it's fine, just more things that have become a normal part of our routine. Our new normal.

He's very comfortable being out and about with stoma uncovered and uncapped. Doesn't bother him at all. He chooses not to use any of the devices that the surgeon had supplied, they get blocked too easily and breathing is most important. He'll wear a "mask" or bandana while working which is good, there is no natural filter after all. Need to protect the airway.

All in all he's doing good! Improving. We're doing good. Adapting. Adjusting. Life is good when you're alive. Thanks for visiting and thinking of us. xxoo Beth & James

Catching up with 3...2...1...

Today we go in for the third to last radiation treatment, hurrah! They switched it up to 39 treatments, why? we don't know but we'll take it so last rad is Thursday this week.

Last week when we went in expecting chemo when we met with med onc doc, Dr. W., he told us that there is no evidence that 3 vs 2 treatments is better in head/neck and he seemed a little concerned about how the rad if affecting James' skin. We were told that chemo amplifies the good and the bad of radiation. It also hit James really hard the first 2 times so without really solid recommendation that going forward with chemo 3 would be beneficial we opted out. Hurrah again!

James and Dr. W. decided that continuing with fluids is good at least this week through treatment. Important for kidney function amongst other things.

Skin is breaking down and surfaces are raw both in and out. We're using lot's of aquafor now and covering a bad spot with non-stick pad to protect. All is very sore. He's been doing his own cleaning in and around stoma and I wait to be called in as back up or when something feels deep. We still have all the suction equipment and James still wears the humidifying mask at night to try to keep things moist and moving.

James himself is moving slow. His appetite is WAY down. He's not keeping up with the 4 ensure a day. He's been trying tiny bites of things but between taste still affected by radiation and surfaces of throat (inner and outer) raw and sore swallowing hurts.

He's lost a boatload of weight and muscle mass but is happy he's gotten through it without having to go back on tube feed. We have cases and cases of the liquid goo if anyone is interested! I'll figure out somewhere to donate...

He still uses opiates for pain. It makes me nervous but we'll work on ditching them once treatment is done. We have other options to test including medical grade marijuana edibles thanks to an angel in the family with access. He knows it's there, I think he's tried it. He gets a little short with me when I talk about meds and edibles and food and lots of other things so I've been taking a slight step back. Trying not to push, too much, for now. We'll figure that out too once treatment is done. This week! Woohoo!

Good things. 3 days left! Coffee still tastes ok (although super hot is not good). 3 days left! We've got this.

This last weeks schedule... radiation today then fluids so in for 10:30 and if all goes well out around 2:30, radiation only tomorrow, radiation then fluids again Thursday, done!

We will continue on with med appts and already have something on the books with the surgeon in a couple weeks. We expect follow up with med onc and rad onc as well. The current relief will be not driving in to the hospital every single weekday. Not setting an alarm. Relaxing. Healing. I'm contemplating taking him away for a couple days, maybe to NH, fishing, we'll see. He needs a little something nice to think about and do, it's time to move on :^)

xxoo Beth and James

Death Mask

James asked me to go back into radiation oncology with him today so that I could take a photo of him in his "death mask". Yikes no wonder he needs an ativan before coming in for treatment. I'd need a couple and a shot of something on the side. What a guy! They said we can take the mask home with us when treatment is done. I'm thinking some kind of art installation or multimedia piece for the living room...

We went from radiation treatment to infusion for a couple bags of i.v. fluids. They'd completely forgotten about us with the first chemo treatment so I think they're over doing it playing catch up after the second with fluids 2x a week. It becomes a full day event arriving at 10 a.m. for rad onc then leaving infusion around 2. James is sitting watching The Chew, they're all eating some kind of delicious fruit tart cake thing. So interesting to me that this is the show he's chosen to watch when food actually isn't all that appealing to him. Once again I forgot to bring snacks so once again I visited the hospital cafeteria to scavenge. I found some cheese and grapes, carrots and celery for James that he's been nibbling and I had a bowl of hospital grade Pho, honestly not the worst thing I've eaten. James tried a tiny bit and made his face :^) sometimes I think I offer him bites of what I'm eating to just see the face when it doesn't taste good.

One more rad treatment this week then we have the weekend off. Hurrah! Then two more weeks of radiation and 1 more chemo treatment (again, so nice of them to add that on...) James has been maintaining his weight thanks to Ensure (should buy stock in that company) and weight gain protein powder smoothies. I think he's getting a little sick of the chocolate but the others just didn't taste as good. We bought a couple melons which he'd cut up and I think I'll keep containers of cut veg in the fridge too.

We saw the surgeon yesterday. I hadn't cleaned to stoma in the AM (oops) so things were a little (very) crusty and gooey. Sorry Dr. V!!! James and Dr. V just rolled with it, I was slightly horrified. Good for the young resident doing rounds with him to see it for what it is I guess :^) little reality check, are you sure you want to be an ENT?

I'd like to thank again everyone who'd sent gift cards for gas, grocery, amazon, etc. Timing has always been perfect to meet a need or two or five. You are all the best and we love you very much. We are doing well. He is doing well. The kids are around on/off to help and luckily my current self employment can flow around the med appointments. Life is good. James leaves you with a big thumbs up as they were rushing me out of the treatment room. Will try to update again soon! xxoo Beth and James

Chemo... again?

So this morning I thought we were going to hospital for radiation and maybe check in with Dr. R, rad onc, but on the way in James asked if I brought my laptop. Why? Fluids. Everything ran late. Still at hospital and he's hooked up to IV in infusion chair with ginger ale and peanut butter crackers, yum. We need to stop by grocery on the way home. I need s couple things and would love to find something that tastes good to James. Was a tough weekend with low appetite and everything tasting bad. On a slight upswing now, he's willing to taste/try again.

He logged in to his patient portal yesterday or maybe day before and low and behold there is another chemo scheduled, the nurse practitioner had mentioned something about chemo 3 when we were in for blood work and fluids Tuesday. We replied oh no, we're only scheduled for 2. That's not right. What the heck. Asked Dr R about it this AM and he said it's because James is tolerating treatment  so well. If he were more ill or had lost more weight they'd stop at 2. Ugh. Need to talk to med onc, Dr W., to see what's what.

James is doing okl. He has lost a little more weight. Was a little cranky the past couple days or maybe it's me being tense projecting cranky on him. I had to prep to meet with tax guy yesterday and was overly stressed. All is better now that taxes are done and James serms better today so probably all me. Need to relax. Need to breathe. All is well and good.

Looking at him now he's chilling in his chair watching a show. I'm sitting by the window contemplating closing my eyes. We're on week 5, we have 16 radiation left and one surprise chemo. If we move forward with that it's on the 17th. If we push back against it, it's not. Last day of radiation assuming we don't miss any appts is April 27.

Onwards and upwards!!

Xxoo