I called the Onc office this AM because James noticed over the weekend that the chemo appt for Tues was not listed on upcoming appts. They called back and said OOPS computer glitch and you're not scheduled. After a bit of scrambling and having us come up after radiation today to meet w/chemo doc to figure it out they said we'll squeeze you in tomorrow, they'd had cancellations. Then on our way out of that appt they said WAIT how about we do it today? Why not. Sure. Let's do it.
I ran home (actually took the car) to pick up snacks supplies laptop and two hours later was back to keep company. James was all settled in and hooked up when I finally got back.
So here we sit. Almost done. Poison is in and fluids are flushing it back out. James has peed about a thousand times (TMI) because they give you meds that want to make you pee a thousand times to push the toxin through as quickly as possible. Tonight and tomorrow will be all about the gatorade. Mmm hmm...
I just went down to the cafeteria to find my sweetie a little pudding cup, his chemo treat, and they were all out. BUT they had a little icecream cooler so I bought two different flavors so he could pick and out of the goodness of my heart took care of the second one 'cause we couldn't just let it melt. Yum. He chose a klondike bar and I ate a caramel fudge awesome bar (have no idea what the name was).
Fluids are almost done so we're almost out of here. Maybe doing chemo a day early will be better for Easter Sunday. Maybe not, who knows. No matter what he probably doesn't want to be around sick folk and with a big family it's tricky to assume everyone is exceptionally well. Hope your weekend and holiday are fab. xxoo
Monday, March 26, 2018
Sunday, March 25, 2018
Life goes on....
I seem to have completely dropped the blog ball. Sorry 'bout that!
We are moving forward through the daily radiation treatments. 3 weeks down. 5 weeks to go! It's a bit of a grind and James is experiencing some early effects of radiation. The stoma and trachea appear red and sore, there is blood and clotting during cleaning. It's a bit painful for James, we're trying to clean less frequently and he's doing much more himself with mirror and q-tips in hand. I can only imagine how things will be by the end of the 8 weeks. Ugh.
James has said his esophagus is also a little sore, also due to radiation (they're pretty much rotating around his neck so everything is affected) so they prescribed "miracle mouth wash" which isn't a mouth wash as much as a numbing swallow. We were told it'll numb his throat for about 20 minutes, long enough to eat/drink without pain. It's not horrible yet but good to know we have a tool for when it does get bad. Of course it's not covered by insurance. What else is new.
He has no appetite and nothing tastes good. He's pretty much living on chocolate ensure, 4x a day as recommended by the nutritionist. He does try other things in tiny portions but we haven't hit on anything that's had a positive review recently. He wanted to test pizza last night thinking that it wasn't a favorite before chemo/rad so who knows, maybe it would be now? He ate one small slice and called it a day. Luckily Sander was home for a visit so left with a box. I'm struggling not to clean up all the plates as my weight is inching up. So hard to throw food away.
Tiny mini edit... as soon as I clicked post with this entry James came in and said he could smell and taste the cinnamon in the bread pudding I made this morning. Hurrah! Small victory :^) I'll take it!
The second (and last) chemo is this Tuesday so today I start harassing him about hydration, cranking up the fluid intake. It makes such a difference with side effects if you can super hydrate before during and after the treatment. Something I learned back in the day. So nice honestly that it's just the two chemo sessions.
We're thinking that we'll be skipping family Easter gatherings to lay low at home. With the first chemo the side effects hit hard 4-6 days out which is perfect timing for the holiday. He's also very hesitant to be around large crowds because he doesn't want to catch any illnesses. That's all we'd need. Maybe the Easter bunny will visit anyways. We've found that black licorice is a nice flavor for his chemo/rad mouth. Who knew? Also coca cola. All the most nutritious things, yikes.
I'd like to take a moment to thank all of the family and friends who have shown support and love to us in various ways. You have come through for us when we most needed it the most without our asking. Every sign/show of support has been perfect in it's timing to meet unexpected needs. Without being overly specific I hope you know who you are as you read this. We thank you and love you and bless your kind giving hearts. xxoo Beth and James
We are moving forward through the daily radiation treatments. 3 weeks down. 5 weeks to go! It's a bit of a grind and James is experiencing some early effects of radiation. The stoma and trachea appear red and sore, there is blood and clotting during cleaning. It's a bit painful for James, we're trying to clean less frequently and he's doing much more himself with mirror and q-tips in hand. I can only imagine how things will be by the end of the 8 weeks. Ugh.
James has said his esophagus is also a little sore, also due to radiation (they're pretty much rotating around his neck so everything is affected) so they prescribed "miracle mouth wash" which isn't a mouth wash as much as a numbing swallow. We were told it'll numb his throat for about 20 minutes, long enough to eat/drink without pain. It's not horrible yet but good to know we have a tool for when it does get bad. Of course it's not covered by insurance. What else is new.
He has no appetite and nothing tastes good. He's pretty much living on chocolate ensure, 4x a day as recommended by the nutritionist. He does try other things in tiny portions but we haven't hit on anything that's had a positive review recently. He wanted to test pizza last night thinking that it wasn't a favorite before chemo/rad so who knows, maybe it would be now? He ate one small slice and called it a day. Luckily Sander was home for a visit so left with a box. I'm struggling not to clean up all the plates as my weight is inching up. So hard to throw food away.
Tiny mini edit... as soon as I clicked post with this entry James came in and said he could smell and taste the cinnamon in the bread pudding I made this morning. Hurrah! Small victory :^) I'll take it!
The second (and last) chemo is this Tuesday so today I start harassing him about hydration, cranking up the fluid intake. It makes such a difference with side effects if you can super hydrate before during and after the treatment. Something I learned back in the day. So nice honestly that it's just the two chemo sessions.
We're thinking that we'll be skipping family Easter gatherings to lay low at home. With the first chemo the side effects hit hard 4-6 days out which is perfect timing for the holiday. He's also very hesitant to be around large crowds because he doesn't want to catch any illnesses. That's all we'd need. Maybe the Easter bunny will visit anyways. We've found that black licorice is a nice flavor for his chemo/rad mouth. Who knew? Also coca cola. All the most nutritious things, yikes.
I'd like to take a moment to thank all of the family and friends who have shown support and love to us in various ways. You have come through for us when we most needed it the most without our asking. Every sign/show of support has been perfect in it's timing to meet unexpected needs. Without being overly specific I hope you know who you are as you read this. We thank you and love you and bless your kind giving hearts. xxoo Beth and James
Wednesday, March 14, 2018
Storms and ick
The chemo side effects or maybe the radiation side effects or maybe both are starting to hit. James has felt a little lousy yesterday and today. He was still trying to deal with winter storm clean up and may have overdone it. Thanks once again to Terry and Jessie Hart for coming to our rescue with the snow blower.
Last night he had "chills" on and off. When we asked the rad doc this a.m. he said it's probably from overdoing it and also can be a little dehydration and/or not eating enough. The body needs the hydration and fuel.
Tonight he's feeling queazy. He's overlapped two of the anti nausea drugs. Phoebe wanted to make us a big batch of ham and cheddar chowder and the smell of the onions cooking was really tough for him. Need to remember to be more careful cooking in the house.
His temp is also very lightly elevated so we're keeping an eye on it.
I think in general he needs to kick back and rest but it's hard to keep him down. I need to zip tie him to the recliner tomorrow with his gatorade water ensure and yogurt.
Last night he had "chills" on and off. When we asked the rad doc this a.m. he said it's probably from overdoing it and also can be a little dehydration and/or not eating enough. The body needs the hydration and fuel.
Tonight he's feeling queazy. He's overlapped two of the anti nausea drugs. Phoebe wanted to make us a big batch of ham and cheddar chowder and the smell of the onions cooking was really tough for him. Need to remember to be more careful cooking in the house.
His temp is also very lightly elevated so we're keeping an eye on it.
I think in general he needs to kick back and rest but it's hard to keep him down. I need to zip tie him to the recliner tomorrow with his gatorade water ensure and yogurt.
Thursday, March 8, 2018
Winter chemo in New England
James had chemo on Tuesday, all went well. Long day but to be expected and with the nurse popping in/out checking on you changing meds adjusting lines (one IV kept setting the alarm off on the automated drip so she switched it out) it goes by pretty quickly. Also James' chemo nurse, Terri, is an angel but then I think all chemo nurses are angels. What a job.
This bit may be slightly graphic, not really bad but my sister Linda may not want to read. Skip on to the next.... He's had his third radiation treatment this morning. Noticed a little bloody tinge to the stoma stuff starting yesterday but they said that's to be expected. He's been wanting me to clean/suction less and less but I force him to sit once and a while when he starts to sound gurgle-y (technical term) then after a little clean up w/suction equip all is better.
No real side effects yet (that he's told me about) but he's a tough cookie and may be keeping some things to himself. He was out shoveling in the storm last night for a couple hours then again this AM before going over to snowblow round the corner for the elderly gentleman he assists. Our snowblower is dead in the side yard so thanks to our sweetest of neighbors, Jess Hart, for snowblowing our driveway after her driveway before our two neighbors cross the street driveways (yikes) all before she left for work (yikes again). It was 18" of heavy wet snow.
We did get all of the anti-nausea meds, one he takes day 2-3-4 after chemo automatically and the other 2 are back-up as-needed. Nice to have an arsenal of meds just in case. Haven't needed the extras, yet. He's been very good about keeping up the fluids more gatorade than water but some water.
We found out that the little Starbucks kiosk as the hosp does not take Starbucks gift cards (thanks to Mom and Lisa for the gifts) so we drove to a Starbucks near hospital after treatment today to purchase beautiful ground coffee and he (and I) will bring a to-go-cup every morning of delicious Starbucks mmmm to the 10:30 rad treatment. Perfect!
We've found that the 10:30 a.m. timeslot is PERFECT for missing morning commuter and school bus traffic but hideous for finding garage parking once we get to the hosp. Ah well...
Can't think what else is new.
Life feels normal. Normal is good. Life is good. Hope it is for you too! xxoo
This bit may be slightly graphic, not really bad but my sister Linda may not want to read. Skip on to the next.... He's had his third radiation treatment this morning. Noticed a little bloody tinge to the stoma stuff starting yesterday but they said that's to be expected. He's been wanting me to clean/suction less and less but I force him to sit once and a while when he starts to sound gurgle-y (technical term) then after a little clean up w/suction equip all is better.
No real side effects yet (that he's told me about) but he's a tough cookie and may be keeping some things to himself. He was out shoveling in the storm last night for a couple hours then again this AM before going over to snowblow round the corner for the elderly gentleman he assists. Our snowblower is dead in the side yard so thanks to our sweetest of neighbors, Jess Hart, for snowblowing our driveway after her driveway before our two neighbors cross the street driveways (yikes) all before she left for work (yikes again). It was 18" of heavy wet snow.
We did get all of the anti-nausea meds, one he takes day 2-3-4 after chemo automatically and the other 2 are back-up as-needed. Nice to have an arsenal of meds just in case. Haven't needed the extras, yet. He's been very good about keeping up the fluids more gatorade than water but some water.
We found out that the little Starbucks kiosk as the hosp does not take Starbucks gift cards (thanks to Mom and Lisa for the gifts) so we drove to a Starbucks near hospital after treatment today to purchase beautiful ground coffee and he (and I) will bring a to-go-cup every morning of delicious Starbucks mmmm to the 10:30 rad treatment. Perfect!
We've found that the 10:30 a.m. timeslot is PERFECT for missing morning commuter and school bus traffic but hideous for finding garage parking once we get to the hosp. Ah well...
Can't think what else is new.
Life feels normal. Normal is good. Life is good. Hope it is for you too! xxoo
Monday, March 5, 2018
Week of firsts
First radiation treatment is under his belt and we’re back home. They’ve increased to 8 weeks (5 days a week) because they want to hit it from both sides of the neck. Today was a long appointment with preliminary meeting w/team. From here on out it'll be a quick 15 min unless the nurse wants to chat.
Tomorrow is the first of the two chemo treatments. He’ll go to radiation for 8:45 a.m. treatment then chemo at 9 a.m. for 6 hour drip. The job today tomorrow Wednesday is to hydrate hydrate hydrate as it lessens the chemo toxin hanging out and wreaking more havoc with the body. James is not huge on on hydration unless we're talking coffee and beer. I'm trying to switch it up to water and gatorade. Tricky business.
So all is good so far. Today I'm trying to push for the new scripts to be called in from the med onc that we’re supposed to bring to the chemo appt. Seems to be a glitch in the system and time is getting tight. I'd be hesitant to move forward with chemo tomorrow if we don't have the antinausea med in hand. Yikes.
Tomorrow is the first of the two chemo treatments. He’ll go to radiation for 8:45 a.m. treatment then chemo at 9 a.m. for 6 hour drip. The job today tomorrow Wednesday is to hydrate hydrate hydrate as it lessens the chemo toxin hanging out and wreaking more havoc with the body. James is not huge on on hydration unless we're talking coffee and beer. I'm trying to switch it up to water and gatorade. Tricky business.
So all is good so far. Today I'm trying to push for the new scripts to be called in from the med onc that we’re supposed to bring to the chemo appt. Seems to be a glitch in the system and time is getting tight. I'd be hesitant to move forward with chemo tomorrow if we don't have the antinausea med in hand. Yikes.
Thursday, March 1, 2018
Sorry for the huge delay!
In the lull between med appointments I totally lost track of updating you all.
James is well. All is good :^)
We met with the surgeon on Monday morning. He said James has healed nicely. He pulled a couple stray stitches. He gave us a bunch of different trach/stoma devices including the small HME cartridges which don't really work for James as his throat is currently producing too much stuff which clogs the wee cartridge and then he can't breathe which isn't the best thing, yikes. The fit is also tricky to get a good seal to speak. Dr. V. said his skin/incisions will soften and relax as it continues to heal. There are some skin folds which may need to be addressed surgically at a later date. His throat and skin will also be pretty irritated during the 7 weeks of radiation so perhaps best to wait no matter what. We'll have all the gear when he's ready. No hurry. Next surgical follow-up will be in April unless we feel like we need to see Dr. V. earlier.
James goes for the first radiation treatment on Monday March 5 at 10 a.m. and will continue on daily (5 days per week M-F) for 7 weeks. He'll choose a time that day for the following treatments which will need to be pretty early in the morning because....
We met with the medical oncologist (chemo doc) on Tuesday morning and decided on the plan of 2 full dose chemo treatments. The first chemo will be Tuesday March 6. James is scheduled to arrive at 9 a.m. (radiation will need to be around 8 or earlier because he'll still have rad on chemo day). For chemo he'll meet with the doctor at 9 and treatment will begin around 10. It's a 6 hour session (not sure if that includes the time to meet with the doctor) so a full day in hospital. He needs to be well hydrated before during and after chemo to flush the toxins through the body as quickly as possible. The second chemo will be 3 weeks later on March 27. They want us to check temp daily to as a fever 2° higher than normal could be a sign of infection and low WBC count.
With combined chemo/rad and potential nausea which can be controlled with anti-nausea meds and irritation to throat which may make eating/drinking difficult causing dehydration (they may give him periodic IV fluids) and excessive weight loss (they may put him back on the feeding tube). Hoping not w/feeding tube but if it happens it happens and we still have these cases of delicious liquid diet in the living room. Mmm hmm....
The visiting nurse stopped by again today and as always said she's amazed at how strong/healthy he looks. All is good. We'll see her again next week.
So the countdown is on til Monday rad. I'm joining the fun with a mammogram, same hospital, different building. Good times will be had by all. I'll update then if not before. Have a nice weekend!
xxoo from us both
James is well. All is good :^)
We met with the surgeon on Monday morning. He said James has healed nicely. He pulled a couple stray stitches. He gave us a bunch of different trach/stoma devices including the small HME cartridges which don't really work for James as his throat is currently producing too much stuff which clogs the wee cartridge and then he can't breathe which isn't the best thing, yikes. The fit is also tricky to get a good seal to speak. Dr. V. said his skin/incisions will soften and relax as it continues to heal. There are some skin folds which may need to be addressed surgically at a later date. His throat and skin will also be pretty irritated during the 7 weeks of radiation so perhaps best to wait no matter what. We'll have all the gear when he's ready. No hurry. Next surgical follow-up will be in April unless we feel like we need to see Dr. V. earlier.
James goes for the first radiation treatment on Monday March 5 at 10 a.m. and will continue on daily (5 days per week M-F) for 7 weeks. He'll choose a time that day for the following treatments which will need to be pretty early in the morning because....
We met with the medical oncologist (chemo doc) on Tuesday morning and decided on the plan of 2 full dose chemo treatments. The first chemo will be Tuesday March 6. James is scheduled to arrive at 9 a.m. (radiation will need to be around 8 or earlier because he'll still have rad on chemo day). For chemo he'll meet with the doctor at 9 and treatment will begin around 10. It's a 6 hour session (not sure if that includes the time to meet with the doctor) so a full day in hospital. He needs to be well hydrated before during and after chemo to flush the toxins through the body as quickly as possible. The second chemo will be 3 weeks later on March 27. They want us to check temp daily to as a fever 2° higher than normal could be a sign of infection and low WBC count.
With combined chemo/rad and potential nausea which can be controlled with anti-nausea meds and irritation to throat which may make eating/drinking difficult causing dehydration (they may give him periodic IV fluids) and excessive weight loss (they may put him back on the feeding tube). Hoping not w/feeding tube but if it happens it happens and we still have these cases of delicious liquid diet in the living room. Mmm hmm....
The visiting nurse stopped by again today and as always said she's amazed at how strong/healthy he looks. All is good. We'll see her again next week.
So the countdown is on til Monday rad. I'm joining the fun with a mammogram, same hospital, different building. Good times will be had by all. I'll update then if not before. Have a nice weekend!
xxoo from us both
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