Neil saw Dr. Mehta this morning and he seems to think radiation will turn out to be the best option in Neil's case. Neil will have a PET scan on the 13th and then see a radiologist towards the end of February.
Radiation is riskier, but the only thing they were trying to avoid was getting too close to his heart. It seems now the opinion is the field of radiation will be ok. Of course, this is all still subject to change but it seems, at least for now, that the last chemo session will be this Friday!
Thanks to everyone who has joined our Relay for Life team. If you want to participate or donate, click here and click the "donate" or "join my team" button.
We are trying to raise $1000 for the American Cancer Society. The way the relay works is this: Your team walks from 6 p.m. on Friday night to noon Saturday. One person must be on the track at all times, so you can switch out, walk in pairs, whatever. The more people on the team, the less any one person must walk :-)
So far, my dad and Nate and Stacia are on Team Neil!
2010 Relay For Life at the University of Cincinnati, Ohio
Friday, April 23 - Saturday, April 24 at McMicken Commons
88 days left until Relay!
Monday, January 25, 2010
Monday, January 18, 2010
Warm thoughts welcome!
Now, understand this is me writing and not Neil, but it seems like the side effects from this past session were not as bad as the New Year's Eve session (the fast-drip of doom). He was tired but it wasn't as scary as the last time when I was afraid he would get sick if he so much as moved.
The one thing that's happening is that he's getting mentally weary. And who could blame him? He's loving silly activities like Legos, puzzles and models because he can put all of his focus into making something and forget how sick and tired he is. He even tried his hand at origami (a boat which sank as soon as he threw it in the bathtub). When we visited Nate and Stacia a few weekends ago I think that was good for his soul too. I've been trying to arrange visitors to come hang out for an hour or two and that helps both of is. There's a fine line, however, between it being fun and uplifting and being overwhelming. He gets tired easily and crowded places and crazy events are usually a no-no not only for the germ factor, but for the overstimulation. It's like he needs smooth jazz instead of hard rock :-). He enjoys the emails, Facebook comments and texts...so keep those warm thoughts coming.
We both took it easy this weekend because I'm starting to feel the effects of everything too. It just takes a lot out of you and so I'm taking the advice given to new mothers: sleep when he sleeps.
The one thing that's happening is that he's getting mentally weary. And who could blame him? He's loving silly activities like Legos, puzzles and models because he can put all of his focus into making something and forget how sick and tired he is. He even tried his hand at origami (a boat which sank as soon as he threw it in the bathtub). When we visited Nate and Stacia a few weekends ago I think that was good for his soul too. I've been trying to arrange visitors to come hang out for an hour or two and that helps both of is. There's a fine line, however, between it being fun and uplifting and being overwhelming. He gets tired easily and crowded places and crazy events are usually a no-no not only for the germ factor, but for the overstimulation. It's like he needs smooth jazz instead of hard rock :-). He enjoys the emails, Facebook comments and texts...so keep those warm thoughts coming.
We both took it easy this weekend because I'm starting to feel the effects of everything too. It just takes a lot out of you and so I'm taking the advice given to new mothers: sleep when he sleeps.
Friday, January 15, 2010
7th treatment
This morning was Neil's 7th treatment. One more and he's completed 4 cycles of chemo.
He's already feeling a little rough but he usually needs to sleep it off on Friday night anyway. His nurse returned him to the regular slow drip (sounds like making coffee) and said the faster drip last time could have been a reason he felt so sick after the last one.
He's already feeling a little rough but he usually needs to sleep it off on Friday night anyway. His nurse returned him to the regular slow drip (sounds like making coffee) and said the faster drip last time could have been a reason he felt so sick after the last one.
Thursday, January 14, 2010
40th post
Wow, 40th post! I remember posting the first time on this blog and it seems like it was forever ago...when in reality it was just a few months back. So much has happened since then!
Neil has chemo tomorrow and my dad took the day off work to take him. Then he will have another on the 29th and that will end his 4th round. He will then have another PET scan to see if the lymph nodes have returned to normal size and he will also have a consultation with a radiologist. Depending on what that doctor thinks, it's radiation (not sure how much) or two more rounds (4 sessions) of chemo. As I mentioned before, it's better to have the chemo since the long-term side effects aren't as serious as those for radiation. The bad part is that chemo is definitely taking its toll. Neil was sick the entire time we were off for New Year's Eve. He also missed two days of work this week.
He has been feeling sick to his stomach from the chemo, and though he hasn't had vomiting, all he can do it try to sleep it off...I can't imagine feeling nauseous for 3-4 days straight like that, but somehow he pulls through it. We're both dreading this weekend and hoping it's gotten as bad as it's going to get.
We were talking the other night about what the whole experience has been like, and here's the best we can explain it to everyone who hasn't been through it.
Imagine your spouse or child is scheduled to get a severe flu every other week. Then imagine you
have to take them to be infected with it. That's kind of what it's like. Obviously we try to keep in mind that it's medicine, but it's a dreadful feeling to KNOW you're about to have a bad weekend. Imagine knowing exactly when you will get sick for the next six months. It takes a mental toll.
But enough with the negativity. Neil is being strong and we are trying to carry on as normal. We had a nice visit with Nate and Stacia last weekend and Neil surprised me with CATS tickets, so we have that show to look forward to. Everything is going well in the new house, even though I'm antsy to get things painted I don't want that smell to hang around and bother Neil. I'm trying to finish up my book, which was rudely interrupted by cancer :-) when I got the edits back. Neil says as soon as he's better we're doing something every weekend and we're considering going to Potholes Provincial Park, one of our favorite places, for our anniversary in May if all goes well!
Neil has chemo tomorrow and my dad took the day off work to take him. Then he will have another on the 29th and that will end his 4th round. He will then have another PET scan to see if the lymph nodes have returned to normal size and he will also have a consultation with a radiologist. Depending on what that doctor thinks, it's radiation (not sure how much) or two more rounds (4 sessions) of chemo. As I mentioned before, it's better to have the chemo since the long-term side effects aren't as serious as those for radiation. The bad part is that chemo is definitely taking its toll. Neil was sick the entire time we were off for New Year's Eve. He also missed two days of work this week.
He has been feeling sick to his stomach from the chemo, and though he hasn't had vomiting, all he can do it try to sleep it off...I can't imagine feeling nauseous for 3-4 days straight like that, but somehow he pulls through it. We're both dreading this weekend and hoping it's gotten as bad as it's going to get.
We were talking the other night about what the whole experience has been like, and here's the best we can explain it to everyone who hasn't been through it.
Imagine your spouse or child is scheduled to get a severe flu every other week. Then imagine you
have to take them to be infected with it. That's kind of what it's like. Obviously we try to keep in mind that it's medicine, but it's a dreadful feeling to KNOW you're about to have a bad weekend. Imagine knowing exactly when you will get sick for the next six months. It takes a mental toll.
But enough with the negativity. Neil is being strong and we are trying to carry on as normal. We had a nice visit with Nate and Stacia last weekend and Neil surprised me with CATS tickets, so we have that show to look forward to. Everything is going well in the new house, even though I'm antsy to get things painted I don't want that smell to hang around and bother Neil. I'm trying to finish up my book, which was rudely interrupted by cancer :-) when I got the edits back. Neil says as soon as he's better we're doing something every weekend and we're considering going to Potholes Provincial Park, one of our favorite places, for our anniversary in May if all goes well!
Monday, January 11, 2010
Monday Monday Monday
Neil had a routine appointment today (they take his vitals, do bloodwork and make sure he's ready on chemo Fridays) and he was fine. We had been a little concerned because he has had night sweats, which is a "B" symptom of Hodgkin's and can change the staging, but since he doesn't have anymore activity, Dr. Mehta said not to give it a second thought. His counts were okay, which he was worried about too. He just feels tired and down but it's tough to tell if he is catching something or if the chemo is affecting him. Dr. says everything is fine and to take it easy.
Had a relaxing weekend with Nate and Stacia. On Friday, we were both so exhausted that we went to dinner right after work and then went home, read and fell asleep around 9:00! On a Friday night!!! The next day we headed to Hillsboro and it was soooo nice. We haven't been anywhere overnight for three months, which might not sound like that big of a deal, but when you think of the fact that we usually go somewhere every single weekend, the change has been shocking. We went to lunch, hung out and watched the game (so sad) and then watched movies and ordered pizza. It was like old times without the beer!
On Sunday, we came back to meet my dad so he could install the garage door opener. We had put it off because Neil hadn't been feeling well but he felt ok and decided it needed to get done. Before, we had to go out to the garage, open the door, back out, and then one of us had to go back in the garage, close it manually, go back in the house and out the back door, then lock that and go to the car. What a pain! So this morning was MUCH nicer.
He overdid it a little yesterday with getting the opener installed, so he wasn't feeling 100% and went home today after his appointment.
Had a relaxing weekend with Nate and Stacia. On Friday, we were both so exhausted that we went to dinner right after work and then went home, read and fell asleep around 9:00! On a Friday night!!! The next day we headed to Hillsboro and it was soooo nice. We haven't been anywhere overnight for three months, which might not sound like that big of a deal, but when you think of the fact that we usually go somewhere every single weekend, the change has been shocking. We went to lunch, hung out and watched the game (so sad) and then watched movies and ordered pizza. It was like old times without the beer!
On Sunday, we came back to meet my dad so he could install the garage door opener. We had put it off because Neil hadn't been feeling well but he felt ok and decided it needed to get done. Before, we had to go out to the garage, open the door, back out, and then one of us had to go back in the garage, close it manually, go back in the house and out the back door, then lock that and go to the car. What a pain! So this morning was MUCH nicer.
He overdid it a little yesterday with getting the opener installed, so he wasn't feeling 100% and went home today after his appointment.
Tuesday, January 5, 2010
Much-needed time off
Since we've both used our vacation and sick time for Neil's surgeries, treatments and appointments, we looked forward to the holidays. We were off for Christmas Eve and Christmas and returned to work Monday-Wednesday and were off New Year's Eve and New Year's Day. So even though we weren't off work for two weeks like a lot of people, it was a nice break with two short work weeks and two four-day weekends!
Christmas was really nice, we did our Christmas with each other first and then we went to my parents' house, followed by gifts and dinner at Mike and Carol's house. It was a lot of fun...but by the time it was all over around 2:30 we went home and slept until 7!!!
Neil had chemo on New Year's Eve and I was able to go with him. The oncology unit closed that day at noon, so they got him in and out pretty quickly...the turned up the drip to double time and had his bloodwork rushed. So rather than the 5-6 hours he is normally there, it was more like 4 1/2. We ate with Mike and Carol and then we both went home and took a long nap. It's exhausting just being there, so I can't even imagine what it's like to actually get the treatments. While he was sleeping, I went to the store and got stuff for our own little party--two hats, party horns, snacks and the makings for Shirley Temples! We even broke out our Tiffany flutes to drink them from :-). I made fondue and we had a good time just chilling out.
We watched X-Files for a few hours (we are proud owners of the box set and that's all we watch!) and then around 11 tuned into the New Year's Eve coverage at Times Square. Any other year, we'd be painting the town red with Nate and Stacia, but we were actually having trouble staying awake for the ball drop! Next year it's back on though!
A lot of people keep asking how I am too, and I'm doing really well! I think the time off gave me a chance to catch up on sleep, hang out with Neil and just relax--something I rarely get to do. We played with our presents, watched movies and X-Files, cooked good food and just spent time together. It was a very refreshing change of pace!
Neil's last chemo was tough. He was sick for three days. His chemo was last Thursday and he's still recovering. I'm very proud of him for sticking it out at work yesterday because he wasn't feeling well.
Next appointment is next Monday and next chemo is that Friday.
After the treatments this month, he will have a PET scan and they will go from there as far as the decision on more chemo vs. radiation.
Christmas was really nice, we did our Christmas with each other first and then we went to my parents' house, followed by gifts and dinner at Mike and Carol's house. It was a lot of fun...but by the time it was all over around 2:30 we went home and slept until 7!!!
Neil had chemo on New Year's Eve and I was able to go with him. The oncology unit closed that day at noon, so they got him in and out pretty quickly...the turned up the drip to double time and had his bloodwork rushed. So rather than the 5-6 hours he is normally there, it was more like 4 1/2. We ate with Mike and Carol and then we both went home and took a long nap. It's exhausting just being there, so I can't even imagine what it's like to actually get the treatments. While he was sleeping, I went to the store and got stuff for our own little party--two hats, party horns, snacks and the makings for Shirley Temples! We even broke out our Tiffany flutes to drink them from :-). I made fondue and we had a good time just chilling out.
We watched X-Files for a few hours (we are proud owners of the box set and that's all we watch!) and then around 11 tuned into the New Year's Eve coverage at Times Square. Any other year, we'd be painting the town red with Nate and Stacia, but we were actually having trouble staying awake for the ball drop! Next year it's back on though!
A lot of people keep asking how I am too, and I'm doing really well! I think the time off gave me a chance to catch up on sleep, hang out with Neil and just relax--something I rarely get to do. We played with our presents, watched movies and X-Files, cooked good food and just spent time together. It was a very refreshing change of pace!
Neil's last chemo was tough. He was sick for three days. His chemo was last Thursday and he's still recovering. I'm very proud of him for sticking it out at work yesterday because he wasn't feeling well.
Next appointment is next Monday and next chemo is that Friday.
After the treatments this month, he will have a PET scan and they will go from there as far as the decision on more chemo vs. radiation.
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