Opdivo and life

James was in for the first Opdivo infusion yesterday. Fairly uneventful. We did bloodwork first, saw Dr W (the medical oncologist) asked a bunch of questions then went in for the infusion.

Bloodwork was ok. They're monitoring thyroid and increased the med a bit. As a reminder one lobe was removed during laryngectomy. The Opdivo could also impact thyroid so they've increased the meds. We picked up pain meds and filled a saline script at the hospital pharmacy, nice there is one right in the same building as all we do. The saline is used during respiratory therapy and with a small nebulizer for humidity. Nice that they keep the little saline "bullets" in stock in the specialty pharmacy and also that they're covered 100% by our med insurance. The nebulizer I'd purchased is a "Yoofor" portable steam compressor found on Amazon after reading a million reviews. Funny (or sad) that the med ins covered a slew of Albuterol but not a nebulizer. Makes no sense but luckily it wasn't a crazy expensive piece of equipment.

We'd asked Dr W a couple questions about Opdivo. After chatting with my Aunt (thank you Aunt Rose) I learned that my dear cousin works with clinical trials as a biochemist (I think that's correct Mary?) and is extremely knowledgable about immunotherapy actually running clinical trials. She'd asked if James had a PD-L1 test. We asked Dr W and were told that he had not been tested for it although they could. He said no matter the PD-L1 level shown they would still try Opdivo as it does still work in instances of low PD-L1. It's all a little over my head. I need to do more research and pick Mary's brain a bit more. My newest question would be if the PD-L1 marker is low would an alternate immuotherapy work better or do they all function off of PD-L1 level....

The Opdivo will be administered by infusion every 4 weeks with CT scan every 3 cycles so every 12 weeks. The first CT, we were told, is in most instances very false positive so we won't really know until 2nd cycle is completed at 24 weeks whether the immunotherapy is working. Between now/then we live. We watch for any adverse reactions to the Opdivo including rash, fever, issues with lungs which could mimic pneumonia. So far so good in that we haven't seen any change. Hoping with our entire beings that this will work to keep James going indefinitely.

Mornings are slow. He's resting again now eyes closed wearing the nebulizer mask. Morning meds have been taken and he's liberally coated with biofreeze gel. It's a menthol gel and a miracle for quick relief (lasts 20 min to a half hour). We have tubes all over the house. We put in on mostly left side neck down to shoulder but he's recently wanted more over to the center/right too. I had been buying it in pharmacies, etc, but also found it on Amazon for less $. I can buy 3 tubes at a time which are 4 oz ea for $26.85 with free shipping. Locally I'd been buying smaller 3 oz tubes for $11-14 each, yikes. I swear Amazon is going to take over the world and I'd love to support local business more but when it's tricky to go out shopping and you need medical supplies and money is tight and you can write off Amazon Prime for your business it's a savior. I feel like I'm an Amazon ad.... not.

The mental duress of dueling contemplation, positive thinking that treatment will work vs the alternate is what is most difficult for me. He's doing well, energy levels in a state of flux. I think he has a mental list of everything he'd like to get done. As a self employed Jack of all Trades he'd worked on other peoples houses and our property fell by the wayside so the house is in rough shape. He's been puttering with repairing our windows and doors, painting and rebuilding things. Slowly but surely. Keeping busy in the afternoon/evening. Resting early in the day. Awake on/off with his thoughts through the night. For the first time last night I slept on the couch again, he's in the recliner. It's more comfortable for him to be semi upright for breathing and neck and pain. I slept better on the couch than I had been upstairs because I was waking up on/off worrying about him alone downstairs. Perhaps our new normal.

I'm pushing to finish up overdo bead orders this weekend so that we can leave tomorrow for an impromptu week or so at the NH cabin. We need to escape reality for a bit. James wants to build out a couple doors. I'll assist. Hopefully he'll do a little fishing and we'll enjoy being in the wild. Forgetting reality.

Such a rainy day

It's very rainy out today, perfect for James to sleep in and me to catch up with a little work.

We had an appointment yesterday with the palliative care people who seem very nice and supportive. They'll be controlling meds from this point on. They've adjusted pain meds increasing the main one a bit so he's not leaning as heavily on the break through. They're also going to stop the steroid before start of immunotherapy on Friday. We've been told the two contraindicate each other i.e. the steroid could make the immunotherapy slightly less effective and we'd like to give the immunotherapy the best possible chance to work. They're swopping in an antidepressant that they hope will also serve to increase appetite, mood, sleep (so taking at night). I think the one thing we may miss from the steroid is the increased energy, hopefully the improved appetite will continue on with new med. We were told that if the immunotherapy works well for James there is a chance they could add the steroid back in, low dose, to improve quality of life but that would be down the road.

James had two manicotti last night and Phoebe had made a pumpkin pie so he also had two small slices with vanilla ice cream. I can't tell you how wonderful it is to see him eat. Today may be quiet. He'll hopefully be up and puttering. I'll be around the house doing my thing. We have a visitor midday. Not a bad rain day all in all.

Footnote.... we've cancelled visitor, sorry Jen! He's feeling very overtired after all so will continue to rest. Taking it day by day hour by hour minute by minute and in this particular minute he'd like to rest.

Manicotti

We are making manicotti for dinner tonight, no worries. Hopefully it'll be delicious...

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