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!
Wednesday, January 14, 2009
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.
Happy Christmas Eve!
It is raining, so we are staying inside today. Entropy Boy was up coughing last night, so I ended up pulling him in bed with me. It is much easier to care for him when I just have to roll over to do it rather than walking across the house to see if I really heard him.
He doesn't have pneumonia (he had a chest x-ray on Monday) but has a cold that is affecting his lungs. We are using the inhaler every 3 hours (per doctor's orders) until he starts to get over it. Meanwhile, I'm trying to keep his brother from making him laugh; laughing always sends him into a coughing fit.
On the baking front, I made krumkake and rosettes yesterday. They were a lot of work, but quite tasty. We gave them to the houses surrounding us in the neighborhood. In return we got cookies, a Charlie Brown Christmas candle, and a pine wreath. Our little street only has 6 houses on it, so we all interact and watch out for each other. It's so nice to have good neighbors!
Today I have pozole soup in the crockpot for tonight's dinner. I also have the tamales we made cooking in the crockpot. I found a crockpot website that has a recipe for making them that way instead of steaming them. It saves me some work! We're having Mexican food for dinner tonight and cheese fondue for Christmas dinner tomorrow. Our traditional meals for Christmas are for us to pick what we like to eat and serve that. [grin]
Tonight we have the children's Christmas Eve service at church, followed by a cookie buffet. We get home late enough afterwards that the boys just want to go to bed. Tomorrow will be homemade cheese danish, coffee, cocoa, and PRESENTS! The boys are just a bit excited. . .
He doesn't have pneumonia (he had a chest x-ray on Monday) but has a cold that is affecting his lungs. We are using the inhaler every 3 hours (per doctor's orders) until he starts to get over it. Meanwhile, I'm trying to keep his brother from making him laugh; laughing always sends him into a coughing fit.
On the baking front, I made krumkake and rosettes yesterday. They were a lot of work, but quite tasty. We gave them to the houses surrounding us in the neighborhood. In return we got cookies, a Charlie Brown Christmas candle, and a pine wreath. Our little street only has 6 houses on it, so we all interact and watch out for each other. It's so nice to have good neighbors!
Today I have pozole soup in the crockpot for tonight's dinner. I also have the tamales we made cooking in the crockpot. I found a crockpot website that has a recipe for making them that way instead of steaming them. It saves me some work! We're having Mexican food for dinner tonight and cheese fondue for Christmas dinner tomorrow. Our traditional meals for Christmas are for us to pick what we like to eat and serve that. [grin]
Tonight we have the children's Christmas Eve service at church, followed by a cookie buffet. We get home late enough afterwards that the boys just want to go to bed. Tomorrow will be homemade cheese danish, coffee, cocoa, and PRESENTS! The boys are just a bit excited. . .
Monday, December 22, 2008
Mario Kart RULES!!!
Can I just say how much we love playing this game? We have the GameCube version and play it on the Wii with Gamecube controllers. We have 4 controllers, so everyone can play.
We have a level playing field, from Entropy Boy on up to Joe. Well, ok . . .Entropy Boy can skunk all of us some days. But it is such a fun game for the whole family! We have had it for almost a year now and it is by far one of our most favorite games. Joe wants to get the Wii version so the boys can play online with their cousins in MN.
It is a game that we all enjoy playing and takes a lot less time than Monopoly. Remember the endless games of Monopoly?
We sometimes play all against each other; other times we group up in teams with intricate strategies (or as strategic as you can get with a 6 yo). It has the added fun of being able to throw things like bananas and bombs at each other while racing, so it can get very silly.
So if you're ever at our house, you might get invited to play a game. Join in--it's fun! Just watch out for the 6yo. He's really good.
Sunday, December 21, 2008
It Snowed Again
We received another inch or two of snow today. It started about 9:00 a.m. and ended mid-afternoon. Sandy needed a nap, so I sent the boys to play in the back yard while I started clearing the driveway. For me the snow just means more work, but for the boys it's a whole world of adventure. After about fifteen minutes, the boys came around the side of the house:
"Hey dad," yelled spiff, "can you give us a hand? We're trying to build the biggest snowball in the world." I helped them push for a while and then recruited the boy next door to help us get it into its final position.
With the snowball done, it was time for Entropy Boy to dig a fort.
They ran and played and built their forts until it began to sleet and we had to go inside. They played outside for over an hour with no complaints because a snowstorm is still a lot of fun, even if you've got a sick mom.
"Hey dad," yelled spiff, "can you give us a hand? We're trying to build the biggest snowball in the world." I helped them push for a while and then recruited the boy next door to help us get it into its final position.
With the snowball done, it was time for Entropy Boy to dig a fort.
They ran and played and built their forts until it began to sleet and we had to go inside. They played outside for over an hour with no complaints because a snowstorm is still a lot of fun, even if you've got a sick mom.
That Tingles!
The pain isn't as bad this time around. I've been mindful of not doing too much, and I have some Percocet to keep ahead of it. I only take the Percocet if Joe is going to be around because I don't trust myself alone with the boys while I'm on it.
My fingertips are numb this time around. The numbness comes and goes in my toes. The tips of my ears are occasionally numb too, which is an odd feeling.
Tomorrow Joe goes back to work and the boys and I begin "vacation school." We have Story of the World vol. 3 on CD, so we can get in some history time. Michael has to work on his 3, 4, 5, and 6 multiplication tables (we'll play multiplication BINGO) and his handwriting. Peter has handwriting to work on fine motor skills, so I'll give him some crafts. Between the school work and the snow, they should be pretty well occupied so we can avoid cabin fever!
My fingertips are numb this time around. The numbness comes and goes in my toes. The tips of my ears are occasionally numb too, which is an odd feeling.
Tomorrow Joe goes back to work and the boys and I begin "vacation school." We have Story of the World vol. 3 on CD, so we can get in some history time. Michael has to work on his 3, 4, 5, and 6 multiplication tables (we'll play multiplication BINGO) and his handwriting. Peter has handwriting to work on fine motor skills, so I'll give him some crafts. Between the school work and the snow, they should be pretty well occupied so we can avoid cabin fever!
Saturday, December 20, 2008
The Big Storm
The Friday after chemo is normally a quiet day for us. Sandy usually feels pretty well during the morning and afternoon and starts feeling the side-effects of the drugs during the evening and over the next few days.
Yesterday, the boys' school was cancelled because a winter storm was forecast for our region. So mom and the boys were able to enjoy a day together watching movies, baking cookies, and playing games.
The snow started around 11:00 and was soon falling at a rate of an inch or more an hour in parts of the county. We received a total of 8 inches in our town before it ended in the early evening. Even in Minnesota, where we've spent most of our lives, that's a lot of snow; here in Connecticut, because of the inadequate/overtaxed infrastructure, it's paralyzing.
By 1:00 there were already couple of inches on the ground. The Merritt Parkway was closed in Greenwich and near the Sikorski bridge because of unsafe conditions. I was concerned about making it home safely so I decided to leave work early. On a normal day, if I get a head-start on the rush, it's about a half-hour drive home. Yesterday, using a combination of the Merrit parkway, county roads, and residential neighborhoods, it took over two hours. For the poor souls stuck in the evening commute, things were even worse. According to the traffic reports, both the Merrit Parkway and I-95 were averaging 6 to 8 miles an hour and had occasional closures due to hazardous conditions.
When I got home, Sandy let me open one Christmas present: a Power Shovel! While I cleared the driveway, the boys played with their sleds and tried to build a fort. I had to clear the driveway twice yesterday and again this morning. The boys are loving the snow. Entropy Boy was out at least 4 times today and he enlisted my help in building a fort in the front yard.
We're supposed to get more snow tomorrow and I'll probably have the boys out again a few times during the day to give Sandy a break. She's starting to feel the bone and muscle pain from the chemo today and has been napping a bit more.
Yesterday, the boys' school was cancelled because a winter storm was forecast for our region. So mom and the boys were able to enjoy a day together watching movies, baking cookies, and playing games.
The snow started around 11:00 and was soon falling at a rate of an inch or more an hour in parts of the county. We received a total of 8 inches in our town before it ended in the early evening. Even in Minnesota, where we've spent most of our lives, that's a lot of snow; here in Connecticut, because of the inadequate/overtaxed infrastructure, it's paralyzing.
By 1:00 there were already couple of inches on the ground. The Merritt Parkway was closed in Greenwich and near the Sikorski bridge because of unsafe conditions. I was concerned about making it home safely so I decided to leave work early. On a normal day, if I get a head-start on the rush, it's about a half-hour drive home. Yesterday, using a combination of the Merrit parkway, county roads, and residential neighborhoods, it took over two hours. For the poor souls stuck in the evening commute, things were even worse. According to the traffic reports, both the Merrit Parkway and I-95 were averaging 6 to 8 miles an hour and had occasional closures due to hazardous conditions.
When I got home, Sandy let me open one Christmas present: a Power Shovel! While I cleared the driveway, the boys played with their sleds and tried to build a fort. I had to clear the driveway twice yesterday and again this morning. The boys are loving the snow. Entropy Boy was out at least 4 times today and he enlisted my help in building a fort in the front yard.
We're supposed to get more snow tomorrow and I'll probably have the boys out again a few times during the day to give Sandy a break. She's starting to feel the bone and muscle pain from the chemo today and has been napping a bit more.
Thursday, December 18, 2008
Taxol #2 is DONE
I had my second dose of Taxol today. The nurse was chatty, so it went a bit more slowly and I didn't get out of there until 3:30 pm. However, she promised me recipes on how to make my own pirogies and some seafood recipes. I, therefore, forgive her happily and willingly.
I also got a flu shot today. Last time I didn't start feeling the effects of the Taxol until more than 48 hours afterwards. Any side effects I may have from the flu shot should cover the first 48 hours. [grin] I'm getting used to feeling yucky after chemo, however, and I'm learning to conserve my "spoons" for what is really important.
One of my "chemo friends" was there again today. She comes in for one hour each Thursday for Heparin, so we chat then. We, and others, talked about hats, wigs, hair loss, scarves, work, children, food, treatment, doctors, side effects, etc. We completely lose track of time and I don't have little ones saying "Mom! Mom!" while I'm talking. If it weren't for those IV poles getting in the way when we get up to get another cookie or a bag of fish crackers, we'd almost forget why we were there.
Joe took a picture so we could show you the quilt I got in the mail from one of my mom's friends. (THANK YOU!!!! to RM for the beautiful quilt!) It was nice and warm and just the right size for the chemo chair. It is a better picture of the quilt than it is of me.
I also got a flu shot today. Last time I didn't start feeling the effects of the Taxol until more than 48 hours afterwards. Any side effects I may have from the flu shot should cover the first 48 hours. [grin] I'm getting used to feeling yucky after chemo, however, and I'm learning to conserve my "spoons" for what is really important.
One of my "chemo friends" was there again today. She comes in for one hour each Thursday for Heparin, so we chat then. We, and others, talked about hats, wigs, hair loss, scarves, work, children, food, treatment, doctors, side effects, etc. We completely lose track of time and I don't have little ones saying "Mom! Mom!" while I'm talking. If it weren't for those IV poles getting in the way when we get up to get another cookie or a bag of fish crackers, we'd almost forget why we were there.
Joe took a picture so we could show you the quilt I got in the mail from one of my mom's friends. (THANK YOU!!!! to RM for the beautiful quilt!) It was nice and warm and just the right size for the chemo chair. It is a better picture of the quilt than it is of me.
Tuesday, December 16, 2008
Another Treasure From This Past Weekend
One of the things Joe's dad saved for me was Nanny's sewing machine. He said Nanny rarely used it, but had saved everything that came with it.
I opened up the case today to find a circa 1953 Singer 301 Featherweight in mint condition. The foot pedal doesn't even show any wear.
I oiled it and gave it a good going-over. There isn't even any lint anywhere inside of it! I am amazed; it is like the machine was in a time warp. The little piece of paper with "Inspected by" is still in the case.
It sews like a dream--much better than the machine I've used for the last 15 years. I could not afford a comparable modern machine of this quality. I am in love!
I opened up the case today to find a circa 1953 Singer 301 Featherweight in mint condition. The foot pedal doesn't even show any wear.
I oiled it and gave it a good going-over. There isn't even any lint anywhere inside of it! I am amazed; it is like the machine was in a time warp. The little piece of paper with "Inspected by" is still in the case.
It sews like a dream--much better than the machine I've used for the last 15 years. I could not afford a comparable modern machine of this quality. I am in love!
Sunday, December 14, 2008
Retro-Rama!
Tamale Day was wonderful! We chatted for a bit and finally got started around 2 pm. By 3 pm we had made 9-10 dozen tamales using all the chicken and beans and most of the pork. We had quite an assembly line going and everything got done very quickly. We steamed up the black bean tamales in a lobster pot and they were yummy.
While there, a number of us noticed that RP had a lovely Christmas tablecloth on her kitchen table. She said it was her mother's and was probably from around the 1950s. It was very retro and very nice.
Today Joe, the boys, and I went to Albany, NY to go see Joe's grandparents. Joe's father is in town to clean out Joe's grandmother's apartment because she has now moved into the nursing home with Joe's grandfather. It was good to see the two of them at the nursing home, and they were in good spirits to see all of us. But Joe's father has had a TON of work cleaning out the apartment. He asked if there was anything we wanted of Nanny and Poppy's. I asked (thinking of RP) if she had any old table linens, etc. Look what I came home with!
I also was able to bring home several aprons from that era. They are so fun; I love the fabrics from the 40's and 50's.
We also brought back a number of kitchen items: retro Tupperware, an old egg beater that Joe's dad used when he was a child, some enameled stock pots, and a fruit dish that Joe's dad made in shop class in junior high. It will be nice to use the items and think of the history behind them.
A quick update on Entropy Boy: we went to his regular pediatrician on Friday and she checked him over again. The steroid and the inhaler had not cleared up his lungs. She said that he does not have asthma because, if he did, the drugs would have worked better. Since he is in a new school, she said, he is probably just getting illnesses back to back. She put him on antibiotics because there is enough going on with him that he is starting to need them. He is to continue the inhaler because it does help his lungs. If he gets sick again this winter, we may have to dig the inhaler out again, but asthma it is not.
The boys have one more week of school left before a two week Christmas break. I have chemo again on Thursday, so I won't have to take them to school during my bad days. I ordered Story of the World vol. 3 on CD so they can listen to that while I am resting. They have started CD 1 already and are begging to listen to it each night before they go to bed. They LOVE history!
Friday, December 12, 2008
The Rains Came Down and the Floods Came Up. . .
I woke Joe up at 4:30 this morning to tell him that the water alarms were going off in the basement again. He got up to vacuum up the excess water (he figures about 20 gallons worth) that was leaking in the back door, the back corner, and the door between the garage and the basement. Most of it is up now, but it wasn't the most excellent way to start the day for him, I'm sure. I made sure to repay him with lots of hugs and kisses just to offset the unpleasant wakeup call.
On the cancer front, I have been given leave to eat fresh fruits and vegetables whenever I want now! The Taxol doesn't hit my immune system as hard, so my counts were good even though I didn't have any shots last week. I'm rejoicing over small blessings!
So far the Taxol hasn't affected my fingers and toes. I don't know what will happen with successive treatments, but for now I'm counting my blessings. My eyebrows and eyelashes were thinning at a rapid rate before the Taxol, so now they are looking really sparse. I definitely look like a cancer patient now. But since I *am* a cancer patient, it's ok.
My skin is thin and dry, and it sloughs off at the slightest provocation. Washing my face in the morning becomes an exfoliation extravaganza, so I have to be really careful. I'd like to have a face when this is all through and not rub it off before I'm done with treatment.
Entropy Boy is back in school and will have his re-check today on his lungs to see if the steroids and the inhaler are helping. He's been complaining of not feeling well again. The complaints started up right when he started back to school. I think he's trying to get to stay home some more, just to see if he can. He's my fence rattler and really needs to know that the boundaries in his little life are strong and secure. So I sent him back to school with the charge that he is *not* to see the nurse. He will be going to the doctor today and the doctor will check him over, so there is no reason to go down to the nurse's office today.
Tomorrow is tamale-making day! I'm getting together with some friends to make tamales for Christmas Eve. We'll make up a bunch and then freeze them until they are needed. We'll be making three kinds: pork colorado, chicken chile, and black bean/cheese.
On the cancer front, I have been given leave to eat fresh fruits and vegetables whenever I want now! The Taxol doesn't hit my immune system as hard, so my counts were good even though I didn't have any shots last week. I'm rejoicing over small blessings!
So far the Taxol hasn't affected my fingers and toes. I don't know what will happen with successive treatments, but for now I'm counting my blessings. My eyebrows and eyelashes were thinning at a rapid rate before the Taxol, so now they are looking really sparse. I definitely look like a cancer patient now. But since I *am* a cancer patient, it's ok.
My skin is thin and dry, and it sloughs off at the slightest provocation. Washing my face in the morning becomes an exfoliation extravaganza, so I have to be really careful. I'd like to have a face when this is all through and not rub it off before I'm done with treatment.
Entropy Boy is back in school and will have his re-check today on his lungs to see if the steroids and the inhaler are helping. He's been complaining of not feeling well again. The complaints started up right when he started back to school. I think he's trying to get to stay home some more, just to see if he can. He's my fence rattler and really needs to know that the boundaries in his little life are strong and secure. So I sent him back to school with the charge that he is *not* to see the nurse. He will be going to the doctor today and the doctor will check him over, so there is no reason to go down to the nurse's office today.
Tomorrow is tamale-making day! I'm getting together with some friends to make tamales for Christmas Eve. We'll make up a bunch and then freeze them until they are needed. We'll be making three kinds: pork colorado, chicken chile, and black bean/cheese.
Monday, December 8, 2008
And the Aching Continues. . .
Well, here I am again, trying to distract myself from the aching. It wasn't as bad today as it was yesterday, but perhaps that was because I had too much else to think about. Entropy Boy has been sick on and off for the last month, and went to the nurse's office at school a couple of times last week. I took him to the doctor today. The diagnosis was allergy-induced asthma. It doesn't sound like it is something that he will have to deal with the rest of his life, but for now he needs a round of prednisone and an inhaler.
Whoopee. Two of us on steroids.
I think he's kind of looking forward to feeling mean. In reality, the combination of the two drugs will likely make him hyper. And since he will have more energy than I will in the next couple of days, I plan to set him on washing dishes (he likes that one) and putting away laundry. I'd rather channel the energy than fight it.
I'm off to bed to see if I can make it through the night without Vicodin. Joe plans to give me a break in the morning and will take Spiff to school. That way Entropy Boy and I can sleep in.
Whoopee. Two of us on steroids.
I think he's kind of looking forward to feeling mean. In reality, the combination of the two drugs will likely make him hyper. And since he will have more energy than I will in the next couple of days, I plan to set him on washing dishes (he likes that one) and putting away laundry. I'd rather channel the energy than fight it.
I'm off to bed to see if I can make it through the night without Vicodin. Joe plans to give me a break in the morning and will take Spiff to school. That way Entropy Boy and I can sleep in.
Sunday, December 7, 2008
Sunday post-Taxol Update
Oh my. This is not fun. I ache all over from the Taxol. I'm not nauseous and the reflux is under control, but the body aches. . .the Vicodin I took an hour ago isn't touching the aching.
Hoping and praying today was the worst of it.
Hoping and praying today was the worst of it.
Thursday, December 4, 2008
One Taxol Down
Well, the first dose of Taxol is done. I didn't have any bad reactions yet--no flatlining or anything. Cheryl the nurse checked my bp every 15 minutes the first hour and every 1/2 hour for two hours after that and everything was good.
I don't have a picture of today, but I was wearing all black. The oncologist asked if they were supposed to be intimidated by my skull and crossbones head scarf. I told her that I was wearing it to show my displeasure at being there for chemo today. It was my rebellion outfit. Joe asked why I wasn't wearing Goth makeup. [grin]
Tomorrow I get to look forward to looking like I have a sunburned face. That is a side effect of the steroids. Then around Sunday or Monday the bone pain should kick in. Another patient there said that the bone pain, while not pleasant, was easier to deal with than the fatigue of the A/C chemo. She said "You ache, but you can get out of bed." That works for me.
It was interesting to sit there and have conversations with the other patients. We compared notes about surgeons, hospitals, chemo side effects, decisions about reconstruction--everything. Joe was there for some of the conversations, but we all talked very openly. He's been with me every step of the way, so knows what they are all talking about. And those of us going through cancer see our breasts (or lack thereof) in a very detached, medical way. It is hard to think of your breasts as a thing of beauty when they are trying to kill you.
I don't have a picture of today, but I was wearing all black. The oncologist asked if they were supposed to be intimidated by my skull and crossbones head scarf. I told her that I was wearing it to show my displeasure at being there for chemo today. It was my rebellion outfit. Joe asked why I wasn't wearing Goth makeup. [grin]
Tomorrow I get to look forward to looking like I have a sunburned face. That is a side effect of the steroids. Then around Sunday or Monday the bone pain should kick in. Another patient there said that the bone pain, while not pleasant, was easier to deal with than the fatigue of the A/C chemo. She said "You ache, but you can get out of bed." That works for me.
It was interesting to sit there and have conversations with the other patients. We compared notes about surgeons, hospitals, chemo side effects, decisions about reconstruction--everything. Joe was there for some of the conversations, but we all talked very openly. He's been with me every step of the way, so knows what they are all talking about. And those of us going through cancer see our breasts (or lack thereof) in a very detached, medical way. It is hard to think of your breasts as a thing of beauty when they are trying to kill you.
Wednesday, December 3, 2008
Photo from Round 4
We never posted the picture from the 4th round of chemo. Her hair has been gone for a while now and "normal clothes" have replaced the pink outfit:
It's my favorite so far. I had it printed that day, as I waited for her prescriptions, and have it hanging on my desk at work. Something ineffable makes me happy ever time I look at it.
It's my favorite so far. I had it printed that day, as I waited for her prescriptions, and have it hanging on my desk at work. Something ineffable makes me happy ever time I look at it.
Monday, December 1, 2008
My Taxol Starts This Week
I will have my first round of Taxol this Thursday. I'm a bit nervous about all the steroids I have to take--I don't like myself when I'm on steroids. I don't like anyone else when I'm on steroids. [sigh] Only 4 rounds to go. Only 4 rounds to go.
We had a lovely Thanksgiving--good food, good friends, and a lot of fun. The boys had a 5 day break so we had 5 whole days without the alarm clock. It was wonderful. Joe said I was almost like I was last June, before the diagnosis. I thought that was interesting, because *I* can certainly tell that there is a difference. I just can't do as much as I used to.
I recently read a piece called The Spoon Theory that talks about living with an illness. It is an apt explanation of what life is like for me now. I'd love for you to follow the link and read it.
We had a lovely Thanksgiving--good food, good friends, and a lot of fun. The boys had a 5 day break so we had 5 whole days without the alarm clock. It was wonderful. Joe said I was almost like I was last June, before the diagnosis. I thought that was interesting, because *I* can certainly tell that there is a difference. I just can't do as much as I used to.
I recently read a piece called The Spoon Theory that talks about living with an illness. It is an apt explanation of what life is like for me now. I'd love for you to follow the link and read it.
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