I called on Monday to see if they had gotten my radiation schedule set up yet. They hadn't and said it would likely be done at the end of the week. I called again today, but they still aren't ready with it.
On the one hand, I am really enjoying having the time off to recover more energy before I start radiation. On the other hand, the delays are only pushing out the date for when I can finally be DONE.
I did meet with my plastic surgeon this week. I scooted in right before he left for Vietnam this week to work on cleft palates. I asked what the time frame would be for surgery after radiation, and he said he wouldn't consider doing it until six months after radiation. My skin will at least that long to heal. That puts us into fall and the school year, but we will cross that bridge when we come to it.
Other than that, life just marches on. There is laundry to fold, dishes to wash, and cat hair to vacuum. Some things never change!
Friday, February 27, 2009
Tuesday, February 17, 2009
Spiff's Chocolate Pudding Pie
Spiff is making dessert for after dinner tonight. Here is the recipe he is using, based on what we had available at home:
Chocolate Pudding Pie
1 Oreo crumb crust (purchased on clearance at the grocery store)
1 recipe chocolate pudding*
1 (3.9 oz) box Vanilla chocolate chip instant pudding
1 cup milk
1 (8 oz) container Cool Whip, thawed
Chocolate shavings
* Chocolate Pudding
1/2 c sugar
3 heaping TBSP baking cocoa
1/4 cup cornstarch
1/8 tsp salt
2 3/4 cup milk
1. Combine sugar, baking cocoa, cornstarch and salt in a medium saucepan. Stir in milk. Heat over medium high heat, stirring constantly, until mixture comes to a boil. Boil 1 minute.
2. Place 1 1/2 cups of chocolate pudding in crust. Let cool in refrigerator for 1/2 hour. Put remainder of chocolate pudding in Dixie cups and place in freezer for fudgecicles.
3. Combine milk with instant pudding mix and beat for 2 minutes. Fold in half of Cool Whip. Spread pudding mixture on top of chocolate pudding in crust.
4. Spread remaining Cool Whip on pudding mixture. Garnish with chocolate shavings. Chill 3-4 hours.
Enjoy!
Chocolate Pudding Pie
1 Oreo crumb crust (purchased on clearance at the grocery store)
1 recipe chocolate pudding*
1 (3.9 oz) box Vanilla chocolate chip instant pudding
1 cup milk
1 (8 oz) container Cool Whip, thawed
Chocolate shavings
* Chocolate Pudding
1/2 c sugar
3 heaping TBSP baking cocoa
1/4 cup cornstarch
1/8 tsp salt
2 3/4 cup milk
1. Combine sugar, baking cocoa, cornstarch and salt in a medium saucepan. Stir in milk. Heat over medium high heat, stirring constantly, until mixture comes to a boil. Boil 1 minute.
2. Place 1 1/2 cups of chocolate pudding in crust. Let cool in refrigerator for 1/2 hour. Put remainder of chocolate pudding in Dixie cups and place in freezer for fudgecicles.
3. Combine milk with instant pudding mix and beat for 2 minutes. Fold in half of Cool Whip. Spread pudding mixture on top of chocolate pudding in crust.
4. Spread remaining Cool Whip on pudding mixture. Garnish with chocolate shavings. Chill 3-4 hours.
Enjoy!
Monday, February 16, 2009
My Boys Get the "Best Kids Ever" Award Today
I woke up shortly after 5 am with a migraine. I scooted downstairs to take my migraine medicine, but it was too late to stop it. I spent the next three hours in agony until the medicine finally cut it short.
After I finally fell back asleep, Spiff came in to see why I wasn't up (the boys are on Winter Break this week). I told him that I'd had a migraine and he said "OK, I'll get breakfast for me and [Entropy Boy]. Can I watch Star Trek on Netflix?" And he did. They kept it blessedly quiet in the house for the next two hours so I could sleep. Spiff watched his show and Entropy Boy played with Matchbox cars and Hotwheels tracks.
Shortly after lunch, I dropped the boys at D & FL's house (thank you so much!) and went to my radiation set-up appointment. They gave me a CT scan and three tattoos to mark the proper set-up for the radiation machines. They will get back to me in 5-7 days with a treatment plan.
When I went back to pick up the boys, FL had made a chicken pot pie and banana bread for our dinner. It was so nice to not have to cook, and Spiff went back for seconds and thirds.
We've had a quiet evening since we got home. Joe is setting up a server that his company gave him to work on some projects. The boys are watching Netflix. I'm still in a post-migraine funk. Bedtime soon!
After I finally fell back asleep, Spiff came in to see why I wasn't up (the boys are on Winter Break this week). I told him that I'd had a migraine and he said "OK, I'll get breakfast for me and [Entropy Boy]. Can I watch Star Trek on Netflix?" And he did. They kept it blessedly quiet in the house for the next two hours so I could sleep. Spiff watched his show and Entropy Boy played with Matchbox cars and Hotwheels tracks.
Shortly after lunch, I dropped the boys at D & FL's house (thank you so much!) and went to my radiation set-up appointment. They gave me a CT scan and three tattoos to mark the proper set-up for the radiation machines. They will get back to me in 5-7 days with a treatment plan.
When I went back to pick up the boys, FL had made a chicken pot pie and banana bread for our dinner. It was so nice to not have to cook, and Spiff went back for seconds and thirds.
We've had a quiet evening since we got home. Joe is setting up a server that his company gave him to work on some projects. The boys are watching Netflix. I'm still in a post-migraine funk. Bedtime soon!
Saturday, February 14, 2009
Happy Valentine's Day!
Wow! I felt like a normal person today. Amazing!
Joe and the boys let me sleep in until 9 a.m. We puttered around the house until it was time to go to a friend's house. My friends KP and MP were husband-less this weekend, so volunteered to watch our boys while Joe and I went on a date.
When we arrived around 3 p.m., the kids immediately ran off to go shoot Nerf weaponry at each other. Joe and I sat down with KP and had a wonderful chat sans children. After a while we headed out to an Indian restaurant. Oh, the food was so good! We had a chicken appetizer platter and then vegetarian entrees with rice and garlic naan on the side. The restaurant gave us complementary glasses of champagne at the end, but I didn't even take a sip. I REALLY wanted to, but didn't dare because I didn't want to add alcohol to the miasma of stuff my liver has had to deal with.
When we got home, the boys collapsed into bed. They had a great time playing with their friends and want to know if the parents can exchange date nights every week.
I hope your Valentine's Day went as well as ours did!
Joe and the boys let me sleep in until 9 a.m. We puttered around the house until it was time to go to a friend's house. My friends KP and MP were husband-less this weekend, so volunteered to watch our boys while Joe and I went on a date.
When we arrived around 3 p.m., the kids immediately ran off to go shoot Nerf weaponry at each other. Joe and I sat down with KP and had a wonderful chat sans children. After a while we headed out to an Indian restaurant. Oh, the food was so good! We had a chicken appetizer platter and then vegetarian entrees with rice and garlic naan on the side. The restaurant gave us complementary glasses of champagne at the end, but I didn't even take a sip. I REALLY wanted to, but didn't dare because I didn't want to add alcohol to the miasma of stuff my liver has had to deal with.
When we got home, the boys collapsed into bed. They had a great time playing with their friends and want to know if the parents can exchange date nights every week.
I hope your Valentine's Day went as well as ours did!
Saturday, February 7, 2009
Amazing Arnica
Today I got to sleep in until 7 a.m. Bliss! Joe and Spiff went out to run errands while Entropy Boy and I puttered around the house. We made banana-peanut butter-chocolate chip muffins together. We even played with Play Dough. He ran a seafood restaurant and made me Play Dough delicacies while I knitted.
One of the things that Joe did while running errands was to pick up a prescription for me that had been waiting at the pharmacy for several days. I had told my oncologist at my last appointment that I was having neuropathy (pain and tingling) in my feet. It was keeping me awake at night and I was nearly out of percocet. So she wrote me an Rx that was supposed to help with neuropathy and warned me that the drug could cause nausea.
Well, heck. I don't want to be nauseous. So I looked around to see what else I could do. I remembered that we have some arnica rub that works well on bruises and swelling. Arnica is pretty amazing stuff and has been used for centuries (Remember Little Women? It's mentioned in there.) So I tried it on my feet. It worked! My feet didn't hurt in the morning!
So now I put stuff called The Arnica Rub on my feet twice a day. It has arnica, St. John's Wort, comfrey, and some other nice herbs in it. I've been able to sleep three nights without having to take pain medication. Yippee! I have the Rx from the oncologist as a back up, but for now I'm going to be using the arnica because it doesn't make me nauseous or put more strain on my liver. My poor liver needs a rest after all that chemo.
One of the things that Joe did while running errands was to pick up a prescription for me that had been waiting at the pharmacy for several days. I had told my oncologist at my last appointment that I was having neuropathy (pain and tingling) in my feet. It was keeping me awake at night and I was nearly out of percocet. So she wrote me an Rx that was supposed to help with neuropathy and warned me that the drug could cause nausea.
Well, heck. I don't want to be nauseous. So I looked around to see what else I could do. I remembered that we have some arnica rub that works well on bruises and swelling. Arnica is pretty amazing stuff and has been used for centuries (Remember Little Women? It's mentioned in there.) So I tried it on my feet. It worked! My feet didn't hurt in the morning!
So now I put stuff called The Arnica Rub on my feet twice a day. It has arnica, St. John's Wort, comfrey, and some other nice herbs in it. I've been able to sleep three nights without having to take pain medication. Yippee! I have the Rx from the oncologist as a back up, but for now I'm going to be using the arnica because it doesn't make me nauseous or put more strain on my liver. My poor liver needs a rest after all that chemo.
Tuesday, February 3, 2009
Has It Really Been a Week Since I Posted?
I went to see the radiologist today. We talked over what was going to happen next and scheduled my "dry run" of radiation on 2/16. I had asked if we could not have radiation the week the boy had off from school, and the radiologist said that was fine as it would give me an extra week to get my energy level up. I'll start actual radiation treatments on 2/23.
I also met with the oncologist today. I won't see her again for 8 weeks, at which time I will start Tamoxifen. I talked to one of my nurses and she gave me a big hug. I won't miss the chemo, but I will miss all the people I saw each week!
My hair is peach fuzz now, and white. My head is itchy sometimes now due to the grow-in process.
The boys are eating a snack before getting ready for bed. They had an early release from school because of snow. Joe is about to go out and clear the driveway. We are expecting a regular school day tomorrow.
The balloons from my last day of chemo are still around the house. The cat plays with one of them each night, grabbing the string and dragging it around the house. We know where he is by the balloon floating through the air.
I also met with the oncologist today. I won't see her again for 8 weeks, at which time I will start Tamoxifen. I talked to one of my nurses and she gave me a big hug. I won't miss the chemo, but I will miss all the people I saw each week!
My hair is peach fuzz now, and white. My head is itchy sometimes now due to the grow-in process.
The boys are eating a snack before getting ready for bed. They had an early release from school because of snow. Joe is about to go out and clear the driveway. We are expecting a regular school day tomorrow.
The balloons from my last day of chemo are still around the house. The cat plays with one of them each night, grabbing the string and dragging it around the house. We know where he is by the balloon floating through the air.
Wednesday, January 28, 2009
I'm Ready for Them to Go Back to School Now
The boys were both off from school Monday and Tuesday due to fever or not having been over fever for 24 hours. Spiff could have perhaps gone back for Tuesday afternoon, but he was blowing his nose so frequently (and loudly) that I kept him home.
Today, Wednesday, school was canceled due to a winter storm. The boys were both well, however. How could I tell? They were bickering, getting entirely too silly, and generally creating a ruckus whenever they were near each other. Yeah, they felt better. [rolling my eyes]
If I were homeschooling them, we would have just continued our lessons. But I didn't want to cobble something together for today when they felt better. So, we played too many Wii games and just generally frittered the day away. Spiff said at bedtime that he was glad he was going to school tomorrow. Me too, buddy. Me too.
Here's my update:
I'm a week past my last chemo. It takes longer and longer to recover after each successive round of chemo, so I'm still not out of the woods after this last round. My toes and legs hurt so much in bed last night that I had to take percocet again. I'd like to be done with it, but at least I don't have to take it during the day anymore.
I'm still tired, but not like I was after the A/C chemo. I can exercise 10 minutes without wanting to take a nap afterwards.
I meet with the radiologist on Tuesday, Feb. 3 to go over the game plan once again. I expect I'll get my tattoos and start radiation the next week. Unfortunately, the boys have the week off from school during the 3rd week of Feb, so I will have to figure out childcare for that time. It's always something! 8-P
Today, Wednesday, school was canceled due to a winter storm. The boys were both well, however. How could I tell? They were bickering, getting entirely too silly, and generally creating a ruckus whenever they were near each other. Yeah, they felt better. [rolling my eyes]
If I were homeschooling them, we would have just continued our lessons. But I didn't want to cobble something together for today when they felt better. So, we played too many Wii games and just generally frittered the day away. Spiff said at bedtime that he was glad he was going to school tomorrow. Me too, buddy. Me too.
Here's my update:
I'm a week past my last chemo. It takes longer and longer to recover after each successive round of chemo, so I'm still not out of the woods after this last round. My toes and legs hurt so much in bed last night that I had to take percocet again. I'd like to be done with it, but at least I don't have to take it during the day anymore.
I'm still tired, but not like I was after the A/C chemo. I can exercise 10 minutes without wanting to take a nap afterwards.
I meet with the radiologist on Tuesday, Feb. 3 to go over the game plan once again. I expect I'll get my tattoos and start radiation the next week. Unfortunately, the boys have the week off from school during the 3rd week of Feb, so I will have to figure out childcare for that time. It's always something! 8-P
Monday, January 26, 2009
Two Sick Boys (and a partridge in a pear tree?)
Both boys are home sick from school today. Entropy Boy's fever was 101.2 this morning. It dropped down to 100 after some Tylenol, so I gave him some Advil two hours into the Tylenol dose. Spiff had a fever yesterday, but is down to 99.1 without medication today. Other than body aches, a stuffy nose, and a fever, they seem to be ok. I seem to not have picked it up so far, but other than the fever, how would I know? [grin]
We are having yet another quiet day at home today. I guess that is good thing.
We are having yet another quiet day at home today. I guess that is good thing.
Friday, January 23, 2009
Pajama Day
Today was Pajama Day.
Spiff didn't get to go to the birthday party because he woke up sick. Every time he sneezed he sort of coughed in the middle of it and you could tell it was painful. I gave him some tea and let him play games and watch movies all day. He also took a nice hot bath mid-day, but changed right back into his pajamas.
Entropy Boy was healthy, but loves to hang around in pajamas all day anyway. He watched Scooby Doo on Netflix and played a Hot Wheels game. He also did a "science experiment" attempting to re-create the way asteroids hit the moon. He dropped metal marbles into a pan of flour and then lifted them out with a magnet. He had a great time, made a mess, and then cleaned the mess up himself with the dust buster. I think he also looked at some of the flour under our microscope. We had the stereo microscope out because he was looking at his teeth with it. The Tooth Fairy doesn't come to our house; the microscope comes out instead. Weird homeschoolers!
I spent the day in my pajamas as well. I tried to take a nap, but couldn't because I had only taken Advil for the pain. I finally took percocet in the late afternoon when I knew that Joe would be coming home soon. Joe can tell when I have taken it and when I haven't. When I have only taken Advil, I walk like a crabbed old man.
So I made it through today. It was nice to have the boys home because they were a distraction. They are in bed now, and Joe is gone to meet up with some of the guys from church. I'm going to stream another Netflix movie and call it a day.
Spiff didn't get to go to the birthday party because he woke up sick. Every time he sneezed he sort of coughed in the middle of it and you could tell it was painful. I gave him some tea and let him play games and watch movies all day. He also took a nice hot bath mid-day, but changed right back into his pajamas.
Entropy Boy was healthy, but loves to hang around in pajamas all day anyway. He watched Scooby Doo on Netflix and played a Hot Wheels game. He also did a "science experiment" attempting to re-create the way asteroids hit the moon. He dropped metal marbles into a pan of flour and then lifted them out with a magnet. He had a great time, made a mess, and then cleaned the mess up himself with the dust buster. I think he also looked at some of the flour under our microscope. We had the stereo microscope out because he was looking at his teeth with it. The Tooth Fairy doesn't come to our house; the microscope comes out instead. Weird homeschoolers!
I spent the day in my pajamas as well. I tried to take a nap, but couldn't because I had only taken Advil for the pain. I finally took percocet in the late afternoon when I knew that Joe would be coming home soon. Joe can tell when I have taken it and when I haven't. When I have only taken Advil, I walk like a crabbed old man.
So I made it through today. It was nice to have the boys home because they were a distraction. They are in bed now, and Joe is gone to meet up with some of the guys from church. I'm going to stream another Netflix movie and call it a day.
Thursday, January 22, 2009
Ouch.
Two days post chemo. One day post Neulasta shot.
Ouch.
On the bright side, the boys are off from school tomorrow for a teachers' workshop. Spiff has a birthday party to attend, but other than that it will be a quiet day.
I'm just counting down the days until the pain is over.
Ouch.
On the bright side, the boys are off from school tomorrow for a teachers' workshop. Spiff has a birthday party to attend, but other than that it will be a quiet day.
I'm just counting down the days until the pain is over.
Wednesday, January 21, 2009
Two Nights, Two Teeth
Entropy Boy lost his very first tooth last night. He lost a lower front tooth. My baby is growing up!
Tonight he came down with the next lower front tooth in his hand. Two nights, two teeth!
I wonder what he is going to do with his time now? He has been obsessively wiggling these teeth for ages!
Tonight he came down with the next lower front tooth in his hand. Two nights, two teeth!
I wonder what he is going to do with his time now? He has been obsessively wiggling these teeth for ages!
Want to know how many miles I drove to medical appointments last year?
We're tallying it up for tax purposes.
So far the count is 1,265.4 miles. Whew!
So far the count is 1,265.4 miles. Whew!
Tuesday, January 20, 2009
Oh Happy Day!
Today was the LAST CHEMO TREATMENT!!! Yes, I'm shouting. Can't you here me from where you are sitting? I'm thinking Cara should be able to hear me all the way over in the Middle East!
Joe and I dropped the boys off at school (they were on a 90-minute delay due to snow) and then drove to the oncologist's office. Since we had some time to kill before the appointment, we drove over to Krispy Kreme (the only one in CT!) and picked up a dozen donuts for the nurses and staff. They were all very happy to see us when we walked in.
They drew my blood and did my counts while waiting for the doctor to arrive. All the doctors were running late due to the snow and school delays. My counts were right on the borderline, so Nurse Cheryl told me to beg the doctor to give me my last dose today instead of waiting a week. Joe told her that we had another box of donuts in the car--we could try bribing Dr. L with those. [grin]
When Dr. L got in and saw me, she agreed that I could have my last dose today and a shot of Neulasta tomorrow. I will see the radiologist to touch base with her, and start radiation about two weeks after today.
After radiation, I will come back to see Dr. L and she will start me on five years of Tamoxifen. After that is done, I will be on another drug for five years. My greatest risk for getting cancer again would be in the next year or two. My scans all looked great, however, so she doesn't see any spots that worry her.
It is hard to believe that this part is done. Joe kept asking me what I wanted to do to celebrate (besides take a nap) but I didn't want to make any plans until I actually had the IV hooked up. I was worried that my counts would be too low or something else would delay it. We picked up McDonald's on the way home, so that was our celebration dinner. [grin]
Oh, I forgot to tell you the best parts: My new BFF, the nurse-practitioner Virginia, took out my PICC line right after my treatment. Hooray! And when I went back to the treatment room, Joe was there with the boys, and each boy was holding a balloon for me. The nurses all cheered and said goodbye as we all walked out.
Joe and Spiff are at the library to pick up movies for a family movie night. Entropy Boy is playing Hot Wheels Road Race on the Wii. Hank is chasing after the ribbons hanging from the balloons. (Don't worry, I'll cut the ribbons off before I go to bed tonight so the eater-of-indigestible-things cat doesn't eat them.)
This is the song that keeps running through my mind right now:
Oh happy day (oh happy day)
Oh happy day (oh happy day)
When Jesus washed (when Jesus washed)
When Jesus washed (when Jesus washed)
Jesus washed (when Jesus washed)
Washed my sins away (oh happy day)
Oh happy day (oh happy day)
He taught me how (oh, He taught me how)
To wash (to wash, to wash)
Fight and pray (to fight and pray)
Fight and pray
And he taught me how to live rejoicing
yes, He did (and live rejoicing)
Oh yeah, every, every day (every, every day)
(oh yeah) Every day!
Oh happy day (oh happy day)
Oh happy day, yeah (oh happy day)
When Jesus washed (when Jesus washed)
When my Jesus washed (when Jesus washed)
When Jesus washed [hits high note] (when Jesus washed)
My sins away (oh happy day)
I'm talking about that happy day (oh happy day)
Joe and I dropped the boys off at school (they were on a 90-minute delay due to snow) and then drove to the oncologist's office. Since we had some time to kill before the appointment, we drove over to Krispy Kreme (the only one in CT!) and picked up a dozen donuts for the nurses and staff. They were all very happy to see us when we walked in.
They drew my blood and did my counts while waiting for the doctor to arrive. All the doctors were running late due to the snow and school delays. My counts were right on the borderline, so Nurse Cheryl told me to beg the doctor to give me my last dose today instead of waiting a week. Joe told her that we had another box of donuts in the car--we could try bribing Dr. L with those. [grin]
When Dr. L got in and saw me, she agreed that I could have my last dose today and a shot of Neulasta tomorrow. I will see the radiologist to touch base with her, and start radiation about two weeks after today.
After radiation, I will come back to see Dr. L and she will start me on five years of Tamoxifen. After that is done, I will be on another drug for five years. My greatest risk for getting cancer again would be in the next year or two. My scans all looked great, however, so she doesn't see any spots that worry her.
It is hard to believe that this part is done. Joe kept asking me what I wanted to do to celebrate (besides take a nap) but I didn't want to make any plans until I actually had the IV hooked up. I was worried that my counts would be too low or something else would delay it. We picked up McDonald's on the way home, so that was our celebration dinner. [grin]
Oh, I forgot to tell you the best parts: My new BFF, the nurse-practitioner Virginia, took out my PICC line right after my treatment. Hooray! And when I went back to the treatment room, Joe was there with the boys, and each boy was holding a balloon for me. The nurses all cheered and said goodbye as we all walked out.
Joe and Spiff are at the library to pick up movies for a family movie night. Entropy Boy is playing Hot Wheels Road Race on the Wii. Hank is chasing after the ribbons hanging from the balloons. (Don't worry, I'll cut the ribbons off before I go to bed tonight so the eater-of-indigestible-things cat doesn't eat them.)
This is the song that keeps running through my mind right now:
Oh happy day (oh happy day)
Oh happy day (oh happy day)
When Jesus washed (when Jesus washed)
When Jesus washed (when Jesus washed)
Jesus washed (when Jesus washed)
Washed my sins away (oh happy day)
Oh happy day (oh happy day)
He taught me how (oh, He taught me how)
To wash (to wash, to wash)
Fight and pray (to fight and pray)
Fight and pray
And he taught me how to live rejoicing
yes, He did (and live rejoicing)
Oh yeah, every, every day (every, every day)
(oh yeah) Every day!
Oh happy day (oh happy day)
Oh happy day, yeah (oh happy day)
When Jesus washed (when Jesus washed)
When my Jesus washed (when Jesus washed)
When Jesus washed [hits high note] (when Jesus washed)
My sins away (oh happy day)
I'm talking about that happy day (oh happy day)
Friday, January 16, 2009
B-B-Brr! It's C-C-Cold!
The boys and I woke up to 2 degrees outside. Inside, it is 63F in the kitchen. The thermostat is set to 68F, but the furnace is having a hard time keeping the main level of the house at that temp. Upstairs is warmer because, of course, the heat rises to go up there. Plus, we had warm-heat vaporizers running in bedrooms last night to help with our colds.
I'm cuddled up on the couch with a blanket (and seriously considering going to get another one) and drinking a cup of coffee. Hank is curled up in a ball, yet again. I can tell how cold he is by how tightly he curls up.
An update on my grandmother: the Lord released her from her pain last night and took her home. Please keep my mom and her siblings in your prayers. They are expecting the funeral to be on Monday, with internment in the spring (the ground is very frozen up in northern MN). Hopefully I will be able to go to the internment service then.
My internet keeps going in and out. I don't think things in CT are built for this kind of cold! We are below average temperatures for our "planting zone" right now.
I'm cuddled up on the couch with a blanket (and seriously considering going to get another one) and drinking a cup of coffee. Hank is curled up in a ball, yet again. I can tell how cold he is by how tightly he curls up.
An update on my grandmother: the Lord released her from her pain last night and took her home. Please keep my mom and her siblings in your prayers. They are expecting the funeral to be on Monday, with internment in the spring (the ground is very frozen up in northern MN). Hopefully I will be able to go to the internment service then.
My internet keeps going in and out. I don't think things in CT are built for this kind of cold! We are below average temperatures for our "planting zone" right now.
Wednesday, January 14, 2009
Hot Baths and PICC Lines Don't Mix
Hot baths and PICC lines don't mix.
I'm just sayin'. :-/
The on-call nurse was pretty nice about it though. She was in and out to change my now-wet dressing very quickly--she even left her car running outside.
I think I'll stick to showers. . .
I'm just sayin'. :-/
The on-call nurse was pretty nice about it though. She was in and out to change my now-wet dressing very quickly--she even left her car running outside.
I think I'll stick to showers. . .
I'm Tired
I'm tired. That's nothing new, right? Except I didn't do anything all day. I literally sat on the couch and ate bon bons. Well, they were Hershey's kisses, but same difference. I did get off the couch at 3:30 pm to make chicken and homemade noodles, but that really shouldn't exhaust me, should it? Bah.
I went for my CBC (complete blood count) yesterday, and my numbers were high enough that I didn't need a Neupogen shot. I think my numbers were ok because I have a cold and that is stimulating my bone marrow enough, thank you very much. On the bright side, I don't have to go back until Tuesday, when they'll do the counts again to see if I'm good to go for my last chemo. I'd do a happy dance, but I'm too tired. Yawn.
They changed my dressing on my PICC line at the appointment yesterday, which means an IV nurse didn't need to come to our house today to do it. I have to flush the line yet today, and then I'm done with it until tomorrow. I did manage to wrap the PICC line area with Saran Wrap and tape all by myself yesterday so that I could shower. Go me!
I went for my CBC (complete blood count) yesterday, and my numbers were high enough that I didn't need a Neupogen shot. I think my numbers were ok because I have a cold and that is stimulating my bone marrow enough, thank you very much. On the bright side, I don't have to go back until Tuesday, when they'll do the counts again to see if I'm good to go for my last chemo. I'd do a happy dance, but I'm too tired. Yawn.
They changed my dressing on my PICC line at the appointment yesterday, which means an IV nurse didn't need to come to our house today to do it. I have to flush the line yet today, and then I'm done with it until tomorrow. I did manage to wrap the PICC line area with Saran Wrap and tape all by myself yesterday so that I could shower. Go me!
Sunday, January 11, 2009
A Shower is a Wonderful Thing
One drawback of the PICC line is that it is hard to shower. It can't get wet, so I've been sticking with sponge baths for the most part. Tonight though, Joe wrapped my upper arm in Saran Wrap and taped it down so that I could take a nice, hot shower. It felt sooooo good. Afterwards I flushed the PICC line again, like I do every day. So far it hasn't given me any trouble.
I still ache from the Taxol. I took Percocet this morning, and then waited until after the boys were in bed to take it again. I'm glad I can stretch it out (it only lasts 4 hours), but by the end of the day I'm trying really hard not to whimper. It's harder to distract myself from the pain at the end of the day.
As I'm typing this, Joe is doing yoga with the Wii Fit. He does the yoga regularly to stretch out his back. He says it really helps him sleep at night and get going in the morning. I'm watching him do all the stretching with envy. I don't want to pull at where they sewed me up after my port removal, nor do I want to loosen the dressing on the PICC line. Plus, I'm a little unsteady on my feet with the pain and the numbness in my toes. The last thing I need to do is attempt the Palm Tree pose and go down like the loggers are coming through. Soon though. Soon! I want to be able to stretch as well as Joe and the cat do.
On a much sadder front, my grandmother has been moved to palliative care. The doctors are just trying to make her comfortable at this point. She has been in and out of the hospital since her gall bladder surgery and has never really bounced back. She has pneumonia and her blood pressure is all over the place. She has not been eating for a while now. She was born with only one kidney, and that one is down to functioning at 12%.
The family has gathered; the pastors have met with her. I'm 1800 miles away and still on post-chemo medication for pain. I'm not sure my oncologist would even let me anywhere near an airport with the way my immune system is at the moment.
I feel so bad for my mom. She's the oldest surviving child, but my grandmother has always been the great matriarch. It has to be really hard for my mom right now, and I think it would help her for me to be there. [Sigh] This is the first thing in a long time that cancer has *stopped* me from doing.
I still ache from the Taxol. I took Percocet this morning, and then waited until after the boys were in bed to take it again. I'm glad I can stretch it out (it only lasts 4 hours), but by the end of the day I'm trying really hard not to whimper. It's harder to distract myself from the pain at the end of the day.
As I'm typing this, Joe is doing yoga with the Wii Fit. He does the yoga regularly to stretch out his back. He says it really helps him sleep at night and get going in the morning. I'm watching him do all the stretching with envy. I don't want to pull at where they sewed me up after my port removal, nor do I want to loosen the dressing on the PICC line. Plus, I'm a little unsteady on my feet with the pain and the numbness in my toes. The last thing I need to do is attempt the Palm Tree pose and go down like the loggers are coming through. Soon though. Soon! I want to be able to stretch as well as Joe and the cat do.
On a much sadder front, my grandmother has been moved to palliative care. The doctors are just trying to make her comfortable at this point. She has been in and out of the hospital since her gall bladder surgery and has never really bounced back. She has pneumonia and her blood pressure is all over the place. She has not been eating for a while now. She was born with only one kidney, and that one is down to functioning at 12%.
The family has gathered; the pastors have met with her. I'm 1800 miles away and still on post-chemo medication for pain. I'm not sure my oncologist would even let me anywhere near an airport with the way my immune system is at the moment.
I feel so bad for my mom. She's the oldest surviving child, but my grandmother has always been the great matriarch. It has to be really hard for my mom right now, and I think it would help her for me to be there. [Sigh] This is the first thing in a long time that cancer has *stopped* me from doing.
Friday, January 9, 2009
Three Days Post-Taxol: Today is Pain Day
Ugh. I slept well, but as soon as I got up I knew today was going to be pain day. I got the boys off to school easily because I laid out their clothes, backpacks, and snacks last night before they went to bed. As soon as I got home I took a Percocet. It will wear off before I have to pick the boys up again, so I will be safe to drive them. Meanwhile, the Percocet helps me be able to do things like walk up and down stairs without wanting to sit down and cry. Not that I'm going to be walking much of anywhere. I'm going to take a nap until noon. Once I have the boys home again at 3 pm, I'm going to take another Percocet and spend the rest of the afternoon/evening on the couch.
On the bright side, tomorrow should be a better day.
On the bright side, tomorrow should be a better day.
Tuesday, January 6, 2009
Joe Finds a Billing Error # 1
So far, we've had very few problems with the bills and insurance. The doctor's offices know how to submit proper bills and Connecticare has been paying them promptly. That doesn't mean that mistakes don't happen, so it's important to review everything before you pay it. Here's one problem I recently uncovered.
Two weeks ago, the radiologist's office sent us a $279 bill for a July visit. This surprised me: why would I receive a bill 5 months after the service was rendered? I know Connecticare paid the bill--I reviewed it last year, around the time I did my first financial post.
Moreover, I couldn't understand the charges on the bill itself: the debits and credits netted out to zero, yet the bill showed a balance due. Where did the charges come from?
Connecticare's website provides a complete claim history, so I compared the bill I'd received to their transaction history. Tracing the history, it looks like Connecticare paid the claim and later denied it (perhaps on an audit review?); it was then resubmitted and paid by Connecticare. Somewhere in the process, the radiologist's office generated our bill for a "phantom" balance of portions of the charges.
I called radiologist's billing office and the clerk quickly reviewed the bill, told me it was an error and not to pay it. I'm glad I called! Had I paid the bill, I would have had a credit-balance with the radiologist until they eventually reconciled their books and refunded my money. Right now, I need the use of that $279a lot more than the radiologist does.
Always, always, review your bills and make sure you understand them before you pay!
Two weeks ago, the radiologist's office sent us a $279 bill for a July visit. This surprised me: why would I receive a bill 5 months after the service was rendered? I know Connecticare paid the bill--I reviewed it last year, around the time I did my first financial post.
Moreover, I couldn't understand the charges on the bill itself: the debits and credits netted out to zero, yet the bill showed a balance due. Where did the charges come from?
Connecticare's website provides a complete claim history, so I compared the bill I'd received to their transaction history. Tracing the history, it looks like Connecticare paid the claim and later denied it (perhaps on an audit review?); it was then resubmitted and paid by Connecticare. Somewhere in the process, the radiologist's office generated our bill for a "phantom" balance of portions of the charges.
I called radiologist's billing office and the clerk quickly reviewed the bill, told me it was an error and not to pay it. I'm glad I called! Had I paid the bill, I would have had a credit-balance with the radiologist until they eventually reconciled their books and refunded my money. Right now, I need the use of that $279a lot more than the radiologist does.
Always, always, review your bills and make sure you understand them before you pay!
PICC Line is IN, Plus Chemo Today
Joe and I dropped the boys off at school 5 minutes early this morning and headed up to St. Raphael's radiology dept. to get my PICC line inserted. The only delay was that they had an extra "s" in my last name and needed to change it on all my paperwork. Everyone sticks an extra "s" in our last name!
The PICC line went in smoothly and easily. It hurts a bit because it is in the underside fleshy part of my upper arm. There are stitches to hold it in place and it is all bandaged up. I'll be taking Percocet tonight because between the PICC line and the port removal wound, it is going to be hard to sleep. I've had a difficult time sleeping already because of the port removal wound, but at least I was down to Tylenol for the pain.
So far, I liked the port better than the PICC line. I'm going to have to wear button-down or zippered clothes to get my sleeves over the tubing; there goes half my wardrobe.
We drove directly to the oncologist's office and the chemo room after the PICC line placement. Joe got me settled and then went to the deli to get me a muffin for breakfast. I knitted a bit, then dozed for a bit, and then it was time for lunch. Joe went out for that too--McDonalds! I dozed a bit again. Those chairs are really uncomfortable some days. They recline, but you have to put backwards pressure on them to keep them in the reclining position. So if you really fall asleep and relax your legs, your back comes flying forward. Can't you just imagine me launching off my chair one day?
Today's chemo was the second to the last one. After the next one (or maybe before?) I have to meet with my radiologist at Yale as well as my plastic surgeon. I'll also get the PICC line removed after the last chemo.
I'm seeing the light at the end of the chemo tunnel. But I'm as tired as a runner near the end of a marathon.
The PICC line went in smoothly and easily. It hurts a bit because it is in the underside fleshy part of my upper arm. There are stitches to hold it in place and it is all bandaged up. I'll be taking Percocet tonight because between the PICC line and the port removal wound, it is going to be hard to sleep. I've had a difficult time sleeping already because of the port removal wound, but at least I was down to Tylenol for the pain.
So far, I liked the port better than the PICC line. I'm going to have to wear button-down or zippered clothes to get my sleeves over the tubing; there goes half my wardrobe.
We drove directly to the oncologist's office and the chemo room after the PICC line placement. Joe got me settled and then went to the deli to get me a muffin for breakfast. I knitted a bit, then dozed for a bit, and then it was time for lunch. Joe went out for that too--McDonalds! I dozed a bit again. Those chairs are really uncomfortable some days. They recline, but you have to put backwards pressure on them to keep them in the reclining position. So if you really fall asleep and relax your legs, your back comes flying forward. Can't you just imagine me launching off my chair one day?
Today's chemo was the second to the last one. After the next one (or maybe before?) I have to meet with my radiologist at Yale as well as my plastic surgeon. I'll also get the PICC line removed after the last chemo.
I'm seeing the light at the end of the chemo tunnel. But I'm as tired as a runner near the end of a marathon.
Friday, January 2, 2009
No Chemo Today, But the Port is GONE!!!
Well, the oncologist wasn't happy with the tegaderm idea. She canceled chemo for today (which helped the nurses--they were running short on Taxol today) and got me into a different surgeon at my surgeon's practice. I saw Dr. Z at around 1 pm today and she took the port out in the office. She said once they are exposed to air they should really come out. Oh, and the whole scar splitting thing is actually not that common. Just another way in which I am special. [grin]
I thought that the port would just pop out when Dr. Z finished opening the scar, but it was held in there well by scar tissue. She really had to work to remove all the scar tissue in order to get it out. It is good to excel at something, but growing scar tissue wasn't really on my list of things I wanted to be good at.
Since I'm so sensitive to tape adhesives, she stitched the wound together and then put on surgical "superglue." It goes on clear and then dries purple--just the opposite of Elmer's Glue Stick. The boys are fascinated and repulsed by the result. They've each asked to see it several times.
I'm taking some of the Percoset I already have for the pain and using ice for the swelling. I'm still on the Keflex and so will continue that in case there is any low grade infection going on.
On Tuesday I'll go to St. Raphael's radiology dept to have a PICC line installed. Then I'll go to the oncologist's office to have a chemo treatment. That bumps my final treatment back about 5 days. I'm too drugged right now to be more than mildly disappointed by the delay.
Spiff's funny comment for the day: "One good thing about chemo--you don't leave any hair in the bathtub!"
I thought that the port would just pop out when Dr. Z finished opening the scar, but it was held in there well by scar tissue. She really had to work to remove all the scar tissue in order to get it out. It is good to excel at something, but growing scar tissue wasn't really on my list of things I wanted to be good at.
Since I'm so sensitive to tape adhesives, she stitched the wound together and then put on surgical "superglue." It goes on clear and then dries purple--just the opposite of Elmer's Glue Stick. The boys are fascinated and repulsed by the result. They've each asked to see it several times.
I'm taking some of the Percoset I already have for the pain and using ice for the swelling. I'm still on the Keflex and so will continue that in case there is any low grade infection going on.
On Tuesday I'll go to St. Raphael's radiology dept to have a PICC line installed. Then I'll go to the oncologist's office to have a chemo treatment. That bumps my final treatment back about 5 days. I'm too drugged right now to be more than mildly disappointed by the delay.
Spiff's funny comment for the day: "One good thing about chemo--you don't leave any hair in the bathtub!"
Tuesday, December 30, 2008
An Update on the Port
Well, I didn't have to be glued back together today. The surgeon that looked at the port site said that it looks like it is trying to heal up. It doesn't have any fluid under it and the tagaderm (like an adhesive "skin") the nurses put on it yesterday has kept it together. So he cleaned it with iodine and put a new tagaderm on it. I also got some new tagaderm sheets for later use. I am to use the tagaderm and then see my regular surgeon before I start radiation. (Oh, could I, hope against hope, get that stupid port out before radiation?)
Let's hope and pray this solution works! The tagaderm that I got yesterday didn't hold throughout the day. My skin is so dry that it is like putting cornstarch on your skin and then trying to get a bandaid to hold. I'm just really flaky right now. [grin]
Let's hope and pray this solution works! The tagaderm that I got yesterday didn't hold throughout the day. My skin is so dry that it is like putting cornstarch on your skin and then trying to get a bandaid to hold. I'm just really flaky right now. [grin]
Monday, December 29, 2008
A Few Stones in the Road
Well, this journey has been anything but boring.
Christmas was low key and sweet. We took turns opening gifts; no rip-n-run at our house! When everyone was happily absorbed with their gifts, I went upstairs and took a 90-minute nap. In the afternoon, Spiff helped me make cheese fondue and we enjoyed a good meal. Entropy Boy said it was the best Christmas he'd ever had.
The next day (Friday) I had blood drawn and a Neupogen shot. The shot brought bone pain, so Friday night and Saturday were spent quietly. Entropy Boy is *still* needing his inhaler, and my immune system was low, so the two of us stayed home from church on Sunday.
On Sunday night Joe gave me a big hug. The skin that had been stretching so tightly between the two sides of my port scar finally gave way. The scar opened up a bit and you can see the white edge of my port. I hopped on Sonlight's forums and asked the nurses/medical people on there what I should do. I ended up putting antibiotic ointment on it and covering it with a gauze pad. I put on one of my post-surgery bras to keep it in place.
Today I had an oncology appointment anyway, so I showed the nurses there. They got on the phone, and now I have an appointment tomorrow at the surgeon's office to get the scar glued back together. I also got a Rx for Keflex and another shot of Neupogen. The boys were with me for the whole appointment, so they got to sit in the chemo room and play Nintendo DS. They really take it all in stride and talk to the other patients easily if asked a question. I love those little guys!
The bone pain from the Neupogen has started up again, so I took some Percocet. Thank goodness for spell check! The boys are in bed listening to an Arthur book on CD and Joe is downstairs folding laundry. He will get some uninterrupted time to watch a movie again tonight. He's working his way through the series Rome.
Have a good night, everyone!
Christmas was low key and sweet. We took turns opening gifts; no rip-n-run at our house! When everyone was happily absorbed with their gifts, I went upstairs and took a 90-minute nap. In the afternoon, Spiff helped me make cheese fondue and we enjoyed a good meal. Entropy Boy said it was the best Christmas he'd ever had.
The next day (Friday) I had blood drawn and a Neupogen shot. The shot brought bone pain, so Friday night and Saturday were spent quietly. Entropy Boy is *still* needing his inhaler, and my immune system was low, so the two of us stayed home from church on Sunday.
On Sunday night Joe gave me a big hug. The skin that had been stretching so tightly between the two sides of my port scar finally gave way. The scar opened up a bit and you can see the white edge of my port. I hopped on Sonlight's forums and asked the nurses/medical people on there what I should do. I ended up putting antibiotic ointment on it and covering it with a gauze pad. I put on one of my post-surgery bras to keep it in place.
Today I had an oncology appointment anyway, so I showed the nurses there. They got on the phone, and now I have an appointment tomorrow at the surgeon's office to get the scar glued back together. I also got a Rx for Keflex and another shot of Neupogen. The boys were with me for the whole appointment, so they got to sit in the chemo room and play Nintendo DS. They really take it all in stride and talk to the other patients easily if asked a question. I love those little guys!
The bone pain from the Neupogen has started up again, so I took some Percocet. Thank goodness for spell check! The boys are in bed listening to an Arthur book on CD and Joe is downstairs folding laundry. He will get some uninterrupted time to watch a movie again tonight. He's working his way through the series Rome.
Have a good night, everyone!
Wednesday, December 24, 2008
Cancer Had its Own Plans
"The house is clean, Mexican food is in the crock pots, and I'm going to wear the red wig." Whoo Hoo! I couldn't have asked for a better afternoon check-in report. "She's wearing the red wig" I told the guys, and received a round of thumbs-up. It has been a while since we've had a good family night, but it looked like we were going to have one on Christmas Eve.
By late afternoon, however, the news wasn't so good: "Entropy's not doing so well. He needs the inahler every 3 hours until it clears up, so he'll probably be too miserable to go to church," Sandy told me, "and I'm not feeling so great either. I think I tried to do too much today and wore myself out. Can we just have a night at home?" I tried to reassure her, but we were both disappointed because it's been weeks since we've been able to attend church as a family.
When I got home, Spiff greeted me at the door: "Mom's in bed with a migraine so we're supposed to be quiet and have dinner without her. Can you make something different, we don't like Mexican". Well, so much for the evening she'd planned.
That's one of the things you get accustomed to when you live with cancer: you can set your sails, but the illness blows where it will. The key is not to let it beat you, or as gamers would say, you can't get owned by it. Don't think about what you can't do, but figure out what you can do and get doing it. Own it by owning your attitude.
Out came Mario Kart and I challenged Entropy Boy to see if he could unlock a new level while Spiff and I focused on dinner. We decided to heat up a pizza; by the time we were done EB had unlocked a level and a new car. "Mom said we can open the presents from Grammy tonight" Spiff announced after dinner. I didn't quite trust, but didn't dare verify, that story, and we dug in. Yea! New videogames all around! Sandy eventually joined us and we kept the boys' tradition of watching the Grinch.
Every Christmas Eve Sandy plays a trick on the boys: she buys new pajamas and puts them on the boys while the sleep. It's so funny when they wake up and realize what happened. This year, however, she gave them to the boys because she was too sick and weak to undress them in their sleep.
Altogether, we had about an hour of family time before she needed more medication and I put all three of them to bed. The boys couldn't have been happier. With pizza, new PJ's, and early presents they were already saying this was a great Christmas. Tonight I owned cancer.
And for tomorrow? Tomorrow can worry about itself. I'll be chasing the cat with Spiff's new robot, no matter what cancer does.
By late afternoon, however, the news wasn't so good: "Entropy's not doing so well. He needs the inahler every 3 hours until it clears up, so he'll probably be too miserable to go to church," Sandy told me, "and I'm not feeling so great either. I think I tried to do too much today and wore myself out. Can we just have a night at home?" I tried to reassure her, but we were both disappointed because it's been weeks since we've been able to attend church as a family.
When I got home, Spiff greeted me at the door: "Mom's in bed with a migraine so we're supposed to be quiet and have dinner without her. Can you make something different, we don't like Mexican". Well, so much for the evening she'd planned.
That's one of the things you get accustomed to when you live with cancer: you can set your sails, but the illness blows where it will. The key is not to let it beat you, or as gamers would say, you can't get owned by it. Don't think about what you can't do, but figure out what you can do and get doing it. Own it by owning your attitude.
Out came Mario Kart and I challenged Entropy Boy to see if he could unlock a new level while Spiff and I focused on dinner. We decided to heat up a pizza; by the time we were done EB had unlocked a level and a new car. "Mom said we can open the presents from Grammy tonight" Spiff announced after dinner. I didn't quite trust, but didn't dare verify, that story, and we dug in. Yea! New videogames all around! Sandy eventually joined us and we kept the boys' tradition of watching the Grinch.
Every Christmas Eve Sandy plays a trick on the boys: she buys new pajamas and puts them on the boys while the sleep. It's so funny when they wake up and realize what happened. This year, however, she gave them to the boys because she was too sick and weak to undress them in their sleep.
Altogether, we had about an hour of family time before she needed more medication and I put all three of them to bed. The boys couldn't have been happier. With pizza, new PJ's, and early presents they were already saying this was a great Christmas. Tonight I owned cancer.
And for tomorrow? Tomorrow can worry about itself. I'll be chasing the cat with Spiff's new robot, no matter what cancer does.
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