The stoma is small enough that James can now cover it with his thumb and speak as long as the prosthesis is clear (it does get clogged quite a bit). James told Phoebe he sounds like Froggy of Little Rascals. Phoebe is still so much better at reading lips than I am. I keep looking at his eyes. Stop looking at his eyes.
The stoma is also small enough that if James "nods off" sitting up he feels like the head drop closes the opening and he stops breathing. Wearing the humidifier mask helps keep the path to breathing open as it keeps his head up. We're hoping this will be something that will be addressed and corrected next time we see Dr. V. either with the HME or some alternate device.
The visiting nurse had tried to order supplies for us to clean the stoma (long medical grade cotton tip q-tips and cotton pads/sponges) I've been making due (barely) with regular q-tips and tissues. Yikes. So we've been patiently waiting (not) for over a week and just found out that the med supply company rejected our insurance. I really miss having good health insurance that doesn't get rejected. Ugh. I found them on Amazon. Cost isn't hideous so I placed the order but honestly seems like something med insurance should cover don'tcha think?
Still watching the Olympics.
Tuesday, February 20, 2018
Sunday, February 18, 2018
Full speed ahead
We live in New England so snow, yup. James was out shoveling before I got up this morning then went to snow blow for the elderly gentleman he helps. Now he's out and about visiting friends, maybe you?
Saturday, February 17, 2018
Moving forward
We met with the Radiation Oncologist, Dr. R., Thursday to review surgical results and upcoming treatment plan. He scheduled us to go back next day, Friday, for imaging and treatment prep. Radiation will start Monday, March 5 and Dr. R. is planning 7 weeks, 5 days per week due to the advanced stage of the disease. He'll also overlap with chemo and we're reverting back to the original Med Onc, Dr. W., who James thought was a bit negative but the surgeon and rad onc both think is very good. We're leaning towards two full strength chemo treatments rather than weekly low strength. We have an appt with Dr. W. on Feb 27 to plan it out.
Dr. R. (rad onc) also shared details about the surgery which we hadn't heard from the surgeon... the tumor was over 4 cm (close to 2") and was removed with clean/clear margins. Dr. V., the surgeon, also removed 51 lymph nodes in levels II-IV of the neck and a section of the thyroid (no wonder the surgery took over 8 hours). Several of the lymph nodes were cancerous but there was no sign of "extracapsular extension" meaning that the cancer was contained within the walls of the lymph nodes which is good news. There is one suspicious Retropharyngeal Node remaining which couldn't be removed during surgery as it was too deep and will be part of the focus of the radiation.
Prep Friday involved head/neck mold and mask creation so that each time James goes in for treatment he'll be positioned in exactly the same way quickly/easily. I was sent out of the room but James told me after the fact that it was painful/stressful. He wasn't quite due for pain meds before we'd left so was overdue by the time he was taken back for the appt. In hindsight we should have thought to bring meds and he should have taken something for anxiety. The mask creation is a plastic mesh "plate" which is heated/softened and then pushed/molded over the face til the edges touch the table surface so it can be pinned in place during treatment. It put pressure on his already painful neck. If you have any issues with claustrophobia and/or anxiety about being unable to move I'd highly suggest taking an Ativan before having this done for head/neck treatment. The radiation technician was kind at least.
James treated himself to a Starbucks coffee after all was said/done. His new favorite post-treatment treat is a small dark roast, simple pleasures are key. I think it was being unable to have coffee for a few weeks or was it a month through surgery feeding tube etc. If looking for a gift for James a Starbucks gift card would be awesome for 7 weeks of daily treatments. I should probably check to see if they take traditional Starbucks cards first though since it's a little hospital kiosk. Hmmm.... maybe I'll buy the first card to check :^)
Today is a Saturday and we're relaxing at home waiting for the power to come back on. They're working on supplying internet to our wee town via Comcast (yes, we're one of those tiny towns....) so are doing work today on transformers and lines and poles. Good thing the suction equip has a battery back up! Next week we don't have any doctors appts other than the visiting nurse. Shocking. What will we do with ourselves???
Leaving you with a few thoughts. That was a damn big tumor and we should have caught it earlier. If you still smoke now is the time to quit. James was very excited to check off "former smoker" on his hospital paperwork when seeing the surgeon then underlined it to point out to me when we received the visit summary at the end of the appointment. His PCP, Dr. E., asked if he still thinks about smoking and James replied "every day". He wears a nicotine patch and it does help but the craving is still there and may always be. That being said we only have one life and he has chosen to live it. xxoo Beth and James
Dr. R. (rad onc) also shared details about the surgery which we hadn't heard from the surgeon... the tumor was over 4 cm (close to 2") and was removed with clean/clear margins. Dr. V., the surgeon, also removed 51 lymph nodes in levels II-IV of the neck and a section of the thyroid (no wonder the surgery took over 8 hours). Several of the lymph nodes were cancerous but there was no sign of "extracapsular extension" meaning that the cancer was contained within the walls of the lymph nodes which is good news. There is one suspicious Retropharyngeal Node remaining which couldn't be removed during surgery as it was too deep and will be part of the focus of the radiation.
Prep Friday involved head/neck mold and mask creation so that each time James goes in for treatment he'll be positioned in exactly the same way quickly/easily. I was sent out of the room but James told me after the fact that it was painful/stressful. He wasn't quite due for pain meds before we'd left so was overdue by the time he was taken back for the appt. In hindsight we should have thought to bring meds and he should have taken something for anxiety. The mask creation is a plastic mesh "plate" which is heated/softened and then pushed/molded over the face til the edges touch the table surface so it can be pinned in place during treatment. It put pressure on his already painful neck. If you have any issues with claustrophobia and/or anxiety about being unable to move I'd highly suggest taking an Ativan before having this done for head/neck treatment. The radiation technician was kind at least.
James treated himself to a Starbucks coffee after all was said/done. His new favorite post-treatment treat is a small dark roast, simple pleasures are key. I think it was being unable to have coffee for a few weeks or was it a month through surgery feeding tube etc. If looking for a gift for James a Starbucks gift card would be awesome for 7 weeks of daily treatments. I should probably check to see if they take traditional Starbucks cards first though since it's a little hospital kiosk. Hmmm.... maybe I'll buy the first card to check :^)
Today is a Saturday and we're relaxing at home waiting for the power to come back on. They're working on supplying internet to our wee town via Comcast (yes, we're one of those tiny towns....) so are doing work today on transformers and lines and poles. Good thing the suction equip has a battery back up! Next week we don't have any doctors appts other than the visiting nurse. Shocking. What will we do with ourselves???
Wednesday, February 14, 2018
Quiet is the new normal
James has been working a little with alternate methods of talking. In lieu of the voice prosthesis (while we wait for stoma to heal and possible HME to assist) the other method of speaking is to "swallow" a bit of air then "push" it back up (aka burping) using the air to speak. He's actually pretty good at it, one or two words at a time. I told him he'll be the favorite great uncle to all the wee boys and maybe girls too teaching them all to burp talk at family parties. The Moms and Dads will love us, I'm sure. Bro-Mark stopped by for a visit last night and they were reminiscing when kids about burping the word "rutabaga"... any other Mellors have memories of that? Too funny.
Any hooo we're pretty relaxed here in the house. We've been watching a LOT of the Winter Olympics. The athletes are pretty amazing and it's perfect timing for our current home bound care. Although today he went out to work for a bit and I did a little work at home. The visiting nurse has come and gone and can't believe how great he looks. We still need to put a few lbs back on (him not me) but all else is great.
Yesterday James checked in with his PCP, Dr. E. and he agrees all is good. Love Dr. E.
Tomorrow we see the Radiation Oncologist to begin set-up for radiation treatment which we think may start in 3 weeks or so?
We've asked for a new Medical Oncologist for chemo, the one that I'd selected as suggested by my Med Onc is not positive thinking enough for James so he asked the surgeon to suggest someone else. Nothing scheduled yet but it's in the works.
I'm lighting the torch now to make beads. Phoebe is in the kitchen planning dinner for us. James is relaxing in his easy chair watching TV and hooked up to humidity. It's a happy Valentines Day for us, hope it is for you too. Sending love and xxxxxxx Beth and James
Any hooo we're pretty relaxed here in the house. We've been watching a LOT of the Winter Olympics. The athletes are pretty amazing and it's perfect timing for our current home bound care. Although today he went out to work for a bit and I did a little work at home. The visiting nurse has come and gone and can't believe how great he looks. We still need to put a few lbs back on (him not me) but all else is great.
Yesterday James checked in with his PCP, Dr. E. and he agrees all is good. Love Dr. E.
Tomorrow we see the Radiation Oncologist to begin set-up for radiation treatment which we think may start in 3 weeks or so?
We've asked for a new Medical Oncologist for chemo, the one that I'd selected as suggested by my Med Onc is not positive thinking enough for James so he asked the surgeon to suggest someone else. Nothing scheduled yet but it's in the works.
I'm lighting the torch now to make beads. Phoebe is in the kitchen planning dinner for us. James is relaxing in his easy chair watching TV and hooked up to humidity. It's a happy Valentines Day for us, hope it is for you too. Sending love and xxxxxxx Beth and James
Sunday, February 11, 2018
He's out and about
James has been de-icing snow blowing sanding etc the past few days on/off. He says he feels better being upright and the humid air outside feels good breathing. Today he's out and about in the car, doing a little work for an elderly gentleman in town he assists and visiting people. I'm home working on bead stuff. We bought some tiny notebooks for his shirt pocket so he doesn't have to carry the huge clipboard everywhere. I'm going to make some little cards he can hand out, "Can't speak, will write" just need to figure out exactly what they should say, something short and sweet.
I made a big batch of gorp for quick calorie intake and energy. Phoebe made a delicious pot pie last night. This morning we had waffles with real syrup yum. I've got a batch of bread started and used the remainder of the Dije chicken for chix salad in the fridge, again quick easy food. We have a freezer full of ice cream not sure why. I'm contemplating oatmeal cookies. My goal is getting him to gain 30lbs back without me doing the same. Tricky.
A fairly quiet weekend which is nice. Hope yours is too!
I made a big batch of gorp for quick calorie intake and energy. Phoebe made a delicious pot pie last night. This morning we had waffles with real syrup yum. I've got a batch of bread started and used the remainder of the Dije chicken for chix salad in the fridge, again quick easy food. We have a freezer full of ice cream not sure why. I'm contemplating oatmeal cookies. My goal is getting him to gain 30lbs back without me doing the same. Tricky.
A fairly quiet weekend which is nice. Hope yours is too!
Saturday, February 10, 2018
Yeehaa
Yesterday we went to meet with the surgeon, Dr. V., and James had a long list of questions including when does feeding tube come out, when can I start eating again, when will prosthesis be placed, etc. Dr. V. rushes in an hour late which is his norm because he stays with you for as long as you need in your "20 min" appointment. Before James asks a thing he sits James in the med chair grabs a surgical kit and gets to work. Within 10 minutes....
The feeding tube is OUT!! The pen cap catheter is OUT!! The prostheis is IN!! Wahoo!!!
James can eat anything. Absolutely anything. His appetite doesn't seem to be what it is but I also need to get to work creating interesting things to eat. Our kitchen is currently dysfunctional as it was only Phoebe and I eating and we've been grazing. Time to clean up and make a little somethin-somethin. James' sweet sister baked a chicken dinner for us a night or two ago––absolutely perfect timing, thanks Dije––I may take the remainder to morph into a chicken pot pie. One of James' favorites. We'd share the pot pie baked by sweet neighbor Jess last week but Phoebe and I baked/ate/as soon as it was dropped off whoops.
The voice prosthesis will be a work in progress. It's a tiny plastic device that redirects the air from the trachea through a one way valve to the esophagus. The way you redirect the air is to block the stoma so the air is forced through the valve. James' stoma is quite low due to the size of the tumor. It sits in the notch at the base of his throat. He had more success swallowing air to create sound. He'll keep messing around with it but for now written word communication is easiest. Speach will hopefully be easier if/when an HME (heat and moisture exchange) device is placed.
We see Dr. V. again in a couple weeks when we'll discuss the HME which will help with speech but more importantly temperature/humidity control and also serves as a filter. Currently James is still hooking himself up to the humidifier unit by hose to stoma mask to keep things moist. There is still swelling and wounds are healing around the stoma so it's too early for the device. Crossing fingers that placement will work in his particular case (stoma placement, low, near clavicle) and that insurance won't give us any grief.
We have an appointment to see the PCP next week, the visiting nurse will visit, we have an initial appointment with the Rad Onc and they're booking an appointment with a Med Onc. Chemo and radiation were expected to start 6 weeks out, I think from surgical date so we may be getting close.
While I was chatting with the nurse in Dr. V.'s office about supplies we needed for the house James was asking Dr. V. the remainder of the questions so I was out of the loop but James told me after we'd left that Dr. V. thinks he got all the nearby lymph nodes and as previously mentioned margins were clear around the tumor. Looks like we're in pretty good shape moving forward with treatment!
Next steps will be bulking James back up again (he'd lost 30 lbs prior to surgery) and regaining physical strength. We'll be making lot's of smoothies with the weight gain protein powder and if you'd been dying to cook something yummy for us maybe now is the time :^) We need to whet his appetite!!
Thanks for thinking of us. xxoo Beth and James
The feeding tube is OUT!! The pen cap catheter is OUT!! The prostheis is IN!! Wahoo!!!
 |
| Feeding tube OUT.... real food IN.... wahoo!! |
The voice prosthesis will be a work in progress. It's a tiny plastic device that redirects the air from the trachea through a one way valve to the esophagus. The way you redirect the air is to block the stoma so the air is forced through the valve. James' stoma is quite low due to the size of the tumor. It sits in the notch at the base of his throat. He had more success swallowing air to create sound. He'll keep messing around with it but for now written word communication is easiest. Speach will hopefully be easier if/when an HME (heat and moisture exchange) device is placed.
We see Dr. V. again in a couple weeks when we'll discuss the HME which will help with speech but more importantly temperature/humidity control and also serves as a filter. Currently James is still hooking himself up to the humidifier unit by hose to stoma mask to keep things moist. There is still swelling and wounds are healing around the stoma so it's too early for the device. Crossing fingers that placement will work in his particular case (stoma placement, low, near clavicle) and that insurance won't give us any grief.
We have an appointment to see the PCP next week, the visiting nurse will visit, we have an initial appointment with the Rad Onc and they're booking an appointment with a Med Onc. Chemo and radiation were expected to start 6 weeks out, I think from surgical date so we may be getting close.
While I was chatting with the nurse in Dr. V.'s office about supplies we needed for the house James was asking Dr. V. the remainder of the questions so I was out of the loop but James told me after we'd left that Dr. V. thinks he got all the nearby lymph nodes and as previously mentioned margins were clear around the tumor. Looks like we're in pretty good shape moving forward with treatment!
Next steps will be bulking James back up again (he'd lost 30 lbs prior to surgery) and regaining physical strength. We'll be making lot's of smoothies with the weight gain protein powder and if you'd been dying to cook something yummy for us maybe now is the time :^) We need to whet his appetite!!
Thanks for thinking of us. xxoo Beth and James
Wednesday, February 7, 2018
Still here and dinner time, yum.
 |
| Dinner time for James |
I think I'd mentioned that he sets himself up. The hospital had him on a strict schedule 12 hours overnight continuous feed but he's just been hooking himself up on/off during the day as he feels hungry. We have an appointment Friday with the surgeon and hope/pray that the feeding tube will come out. He's about ready to be done with it although UPS just delivered a month supply of the liquid "food". The hospital formula smelled just like vanilla cake batter, I can't quite place this one. It's a bit like a beige sludge and very sticky. I tried to help refill at 3 a.m. night before last and forgot to open the top of the bag so poured the sticky goo all over pole bag Joey cords humidity hose plugs cords floor yikes. Nothing like a little 3 a.m. clean up on aisle 5. James doesn't ask for my help with THAT any more.
The steri-strips running down both sides of his neck fell off today. His neck is looking good and the stitches healed nicely. Baby steps to our new normal.
Thanks today to Jessica Hart for snow blowing for us. I was out shoveling and the snow was like a wet cement. Freezing rain had started mid way through the storm and was weighing everything down.
James had a fairly restful day, he's sitting in his comfy chair now having "dinner" working on the crossword. He's come up with a solution for the endlessly running nose (don't think I'd mentioned this yet? we hope it's from the feeding tube and not permanent...) he neatly rolls a couple tissues as plugs. Interesting look. I took the photo before tissues were in place. I suggested mini marshmallows may be a nice fit. He thinks not.
Tomorrow the visiting nurse visits again if it's not too icy. We were going to play it by ear based on weather. Other than that it may be a quiet day. Probably a little more snow related clean up. I want to make notes for the surgeon on Friday. Best to be prepared so that we don't miss anything!
Thanks for checking in. xxoo Beth and James
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