I've frequently said that one of the problems I have with helping my students develop their writing skills is that they don't think. They don't contemplate. They don't act, they react. They don't plan. They don't delve into material. They skim, they skip, they look for the most obvious, and if they come to a challenge, they stop. They don't think through.
It's not their fault, although at times it seems they are being purposely obstinate. Rumination is simply not respected any more. It's hard to spend time thinking deeply when your cell phone is pinging with texts that interrupt your thoughts. When facebook is right there, begging you to update your status. When there are 1,589 channels you can flip to on tv. When kids are shuffled from one activity to the next, all day every day. When the answer to most questions is "google it."
Now, I'm not saying I'm against current technology. It's here. It's here to stay. It's just going to expand. I think people need to learn to deal with it. After all, at one point, with the invention of alphabets, the great thinkers were afraid that society would be ruined by being able to read and write.
Now, I do have issues with how attention is not trained and how the trend seems to be that in order to learn, everything has to be "fun" and "relevant" and "appeal to the now." That just makes no sense to me. Life isn't all about "now." Lots of what we learn is to get us through the future. And life is full of doing stuff that isn't "fun." Let's face it, doing taxes isn't fun. It may not be interesting. In fact, it might seem "stupid" and "boring" but it has to be done. To hear a lot of my kids' friends talk--and my students--if something is "stupid" and "boring," they won't do it, or they won't do it carefully. They certainly won't invest much effort into it.
Yet, why should I be surprised at this attitude (and I admit, it takes me by surprise time and time again). I'm really not that much more self disciplined. When that attitude rears its ugly head in my own children, I get totally irrational.
Yet, as a culture, we don't respect the slow process of thought, what might be called rumination. Let's face it, people who ruminate, who think, who contemplate, need both time and space to do so.
I think that I probably have a lot of friends--by virtue of where I live, what I do, what my friends do--who fall into this category. I have a lot of artistic friends. My community is full of academics. Those people get paid to contemplate and ruminate. Time and privacy are important values to many of us.
But, in general, these aren't values shared by a large portion of society. At least not in my experience.
What prompted me to have these thoughts today, though, is this article in the New York Times.
Whether the hypothesis is valid or not, it's clearly food for thought.
Sunday, February 28, 2010
Saturday, February 27, 2010
This gives me hope:)
I haven't really minded not having hair.
I'm over the novelty of it.
It's a tad chilly in the winter.
But I'm ready to have hair. I rather enjoyed the little bit that I had during my surgery break from chemo. I was actually more sad to see that pink fuzz go than I was to shave off all my hair in August.
This gives me hope. Maybe I'll do a photo journal starting with my last chemo.
I'm over the novelty of it.
It's a tad chilly in the winter.
But I'm ready to have hair. I rather enjoyed the little bit that I had during my surgery break from chemo. I was actually more sad to see that pink fuzz go than I was to shave off all my hair in August.
This gives me hope. Maybe I'll do a photo journal starting with my last chemo.
Not out of the running yet...
...or at least not for missing the sign up for soccer.
Since Tynan was on the team in the fall, his paperwork is all OK for spring.
That's a relief.
It's also a relief to know that I haven't totally screwed up MOTY in the second month of the year. Now, whether we can get organized enough to make practices, find uniform pieces, cleats, etc....I might end up dropping out of the running soon, but at least not this soon.
I might even have managed to get Aidan on a spring team. I'd forgotten his birthday makes him still a legit U14 player, so the trapped 8th grade rule might not apply to him....that would be a big SCORE!
Add all that to the Teva shoes that originally retailed at $130 and I found, NWT, at Goodwill yesterday for $15 (the most expensive wearable item I've ever bought at Goodwill) that fit either big boy (and both like them), I just might start earning my keep around here.
Since Tynan was on the team in the fall, his paperwork is all OK for spring.
That's a relief.
It's also a relief to know that I haven't totally screwed up MOTY in the second month of the year. Now, whether we can get organized enough to make practices, find uniform pieces, cleats, etc....I might end up dropping out of the running soon, but at least not this soon.
I might even have managed to get Aidan on a spring team. I'd forgotten his birthday makes him still a legit U14 player, so the trapped 8th grade rule might not apply to him....that would be a big SCORE!
Add all that to the Teva shoes that originally retailed at $130 and I found, NWT, at Goodwill yesterday for $15 (the most expensive wearable item I've ever bought at Goodwill) that fit either big boy (and both like them), I just might start earning my keep around here.
Good Taste!
No, not my jokes. Those are frequently in bad taste. Not my dress. I really have no taste. No, I'm talking about my ability to taste.
It's crazy. I bet I'm tasting at about 25%.
Today I've been craving Muffaleta, sans the bread. OK, so just the olive relish/salad. Instead, I'm just eating green olives and kalamata olives straight from the jars. I can taste those.
I'm also craving grapefruit, actually a citrus fruit salad, but the taste isn't all there, making it really hard to go to the effort of making such a salad. Maybe I'll just peel and eat a grapefruit.
It's weird to not taste. Yet, because of the natural drive to foster cell growth and rejuvenation, I crave certain types of food. Even without an appetite, I have a drive to eat. Very little is satisfying, though. It's like I"m an eating machine in search of taste.
I'm off for a bag of tuna now, drenched in some high taste dressing. Maybe I should try Tynan's preschool age snack: bag of tuna with salsa and grape jelly added. He loved it when he was 3. It was at that age that he ate crushed garlic from the jar with a spoon and would request garlic pickles as his "treat" from the grocery store.
Or, maybe I'll just go eat more olives.
It's crazy. I bet I'm tasting at about 25%.
Today I've been craving Muffaleta, sans the bread. OK, so just the olive relish/salad. Instead, I'm just eating green olives and kalamata olives straight from the jars. I can taste those.
I'm also craving grapefruit, actually a citrus fruit salad, but the taste isn't all there, making it really hard to go to the effort of making such a salad. Maybe I'll just peel and eat a grapefruit.
It's weird to not taste. Yet, because of the natural drive to foster cell growth and rejuvenation, I crave certain types of food. Even without an appetite, I have a drive to eat. Very little is satisfying, though. It's like I"m an eating machine in search of taste.
I'm off for a bag of tuna now, drenched in some high taste dressing. Maybe I should try Tynan's preschool age snack: bag of tuna with salsa and grape jelly added. He loved it when he was 3. It was at that age that he ate crushed garlic from the jar with a spoon and would request garlic pickles as his "treat" from the grocery store.
Or, maybe I'll just go eat more olives.
Friday, February 26, 2010
Thursday, February 25, 2010
Ewwww....gross
Think of all the places you have hair. It's not sursing I'm mostly bald. My leg hair is mostly gone. My eyebrows are thin. My eyelashes are starting to fall out. My arm hair is mostly gone.
But this morning, I blew my nose, and ewww.....
Who would have thought?
But this morning, I blew my nose, and ewww.....
Who would have thought?
Tuesday, February 23, 2010
Why I might no longer be finding stuff so funny...
...in general, I think my family is falling apart.
2 yrs ago this month, my mother suddenly died.
18 months ago, my father-in-law died.
1 year ago, we put a bid in on this house.
Almost immediately after that, my husband's position at the university was eliminated.
He was forced to "bump" another employee, ultimately taking a job he was totally unsuited for.
My husband then tore a ligament in his "good" ankle.
He was forced to go on medical leave.
Our insurance refused to pay their share of his physical therapy.
We had to fight that.
We moved house.
One week later, I went out of town for work for a little over a week.
A week after I returned home, we started three week ends of soccer tournaments.
Squeezed in there, a wonderful visit with out of town company for a week.
I was diagnosed with cancer.
Tynan broke an ankle.
I started chemo.
We enrolled the kids in school full time, one of them the night before school started.
I started working full time while doing chemo.
We discover that BGHS is not a suitable place for the one child going there full time, but that there is probably NOT a better option for us in the area, plus he's not going to leave happily. So, for now, he's there.
Mess around trying to get a 504 plan in place, which happens easily. Getting it enforced, another story.
My husband got wind he was going to be fired, so went on medical leave.
My husband couldn't find a job.
My husband's position at the university was eliminated, again.
He found a job, which is tenuous at best, and earns significantly less than before with no retirement.
Total slap in the face come-to-Jesus understanding of age discrimination.
Upheaval on all levels at BGSU...especially regarding job security, which then leads to worries about kids' futures since job security *is* their college savings plan.
I find out I have to have even more chemo.
One child fails one class in high school and nearly fails another. May not be eligible for sports next year.
One kid almost blows his hand off and was lucky to NOT be turned in to homeland security for his foolishness.
One kid gets injured in soccer and spends 6 weeks on crutches and in physical therapy. May never play his position again.
A week after those two incidents (they happened less than a week apart), I have a bilateral mastectomy.
One of my kids gets arrested.
I start intermediate reconstruction.
We deal with legal issues in conjunction to the silly arrest for foolish, yet not harmful, behavior.
I start a new chemo regime, which is much harder than the last regime.
I want to exercise, but am told I can't until my compression sleeves come in. It is taking forever. I have to go to two different OT's to get it managed.
My arm swells off and on. Will this be something I deal with forever? Will it get worse?
I start to plan for radiation, which is more frightening than chemo....if something goes wrong with radiation, you die. It can't be fixed.
I wonder if the radiation will make the lymphedema worse than it is.
I even stress about the color of my lymphedema sleeves.
This is why I watch trash tv 24/7.
I'm sure I'm forgetting something.
Is it any wonder all of my kids are falling apart?
This must end, and it must end soon.
2 yrs ago this month, my mother suddenly died.
18 months ago, my father-in-law died.
1 year ago, we put a bid in on this house.
Almost immediately after that, my husband's position at the university was eliminated.
He was forced to "bump" another employee, ultimately taking a job he was totally unsuited for.
My husband then tore a ligament in his "good" ankle.
He was forced to go on medical leave.
Our insurance refused to pay their share of his physical therapy.
We had to fight that.
We moved house.
One week later, I went out of town for work for a little over a week.
A week after I returned home, we started three week ends of soccer tournaments.
Squeezed in there, a wonderful visit with out of town company for a week.
I was diagnosed with cancer.
Tynan broke an ankle.
I started chemo.
We enrolled the kids in school full time, one of them the night before school started.
I started working full time while doing chemo.
We discover that BGHS is not a suitable place for the one child going there full time, but that there is probably NOT a better option for us in the area, plus he's not going to leave happily. So, for now, he's there.
Mess around trying to get a 504 plan in place, which happens easily. Getting it enforced, another story.
My husband got wind he was going to be fired, so went on medical leave.
My husband couldn't find a job.
My husband's position at the university was eliminated, again.
He found a job, which is tenuous at best, and earns significantly less than before with no retirement.
Total slap in the face come-to-Jesus understanding of age discrimination.
Upheaval on all levels at BGSU...especially regarding job security, which then leads to worries about kids' futures since job security *is* their college savings plan.
I find out I have to have even more chemo.
One child fails one class in high school and nearly fails another. May not be eligible for sports next year.
One kid almost blows his hand off and was lucky to NOT be turned in to homeland security for his foolishness.
One kid gets injured in soccer and spends 6 weeks on crutches and in physical therapy. May never play his position again.
A week after those two incidents (they happened less than a week apart), I have a bilateral mastectomy.
One of my kids gets arrested.
I start intermediate reconstruction.
We deal with legal issues in conjunction to the silly arrest for foolish, yet not harmful, behavior.
I start a new chemo regime, which is much harder than the last regime.
I want to exercise, but am told I can't until my compression sleeves come in. It is taking forever. I have to go to two different OT's to get it managed.
My arm swells off and on. Will this be something I deal with forever? Will it get worse?
I start to plan for radiation, which is more frightening than chemo....if something goes wrong with radiation, you die. It can't be fixed.
I wonder if the radiation will make the lymphedema worse than it is.
I even stress about the color of my lymphedema sleeves.
This is why I watch trash tv 24/7.
I'm sure I'm forgetting something.
Is it any wonder all of my kids are falling apart?
This must end, and it must end soon.
Sunday, February 21, 2010
Wasted 5 weeks and totally out of the running for Mother of the Year
The semester is already 1/2 over; it's nearly Spring Break; I'm not working; I've accomplished nothing.
I had great plans for personal improvement, and the whole lymphedema, sleeve fitting, appointment making, rigmarole has interfered with some of that; general malaise has interfered with other aspects; poor planning has made it so that I can't even find time to organize the bookshelves in the living room. Yet, I've watched a ton of trash TV and am doing a phenomenal job of keeping up with the Kardashians, the pregnant teens, the hoarders, the clean houses, and all those polygamist Mormons. Hmmmm....I'm seeing a correlation here.
Haven't worked on my writing. Haven't taken up a hobby. Haven't worked on the family room. In general, haven't done much of anything.
Haven't even really noticed that I'm not working.
On top of having accomplished nothing, I missed the deadline to sign Tynan up for Spring Soccer. Now, to explain to the child who already thinks we all have it in for him that he's out of soccer....any takers? Damn. There goes MOTY, once again. And it's only February.
I had great plans for personal improvement, and the whole lymphedema, sleeve fitting, appointment making, rigmarole has interfered with some of that; general malaise has interfered with other aspects; poor planning has made it so that I can't even find time to organize the bookshelves in the living room. Yet, I've watched a ton of trash TV and am doing a phenomenal job of keeping up with the Kardashians, the pregnant teens, the hoarders, the clean houses, and all those polygamist Mormons. Hmmmm....I'm seeing a correlation here.
Haven't worked on my writing. Haven't taken up a hobby. Haven't worked on the family room. In general, haven't done much of anything.
Haven't even really noticed that I'm not working.
On top of having accomplished nothing, I missed the deadline to sign Tynan up for Spring Soccer. Now, to explain to the child who already thinks we all have it in for him that he's out of soccer....any takers? Damn. There goes MOTY, once again. And it's only February.
Round 2, session 3, day 2
I have a love hate relationship with decadron, the steroids I take to combat nausea. Like all steroids of this sort, it causes sleeplessness, which may be the most immediately noticeable side effect (look at the posting time of this entry, for example....I'm not the least bit sleepy), increased and irrational appetite (and not for healthy foods...no one craves celery when poppin' in 'roids), and wildly racing brain. I've also noticed a decrease in my ability to be calm and rational....but I can blame that on so many things.
But I do so love not puking or feeling like I'm going to puke.
I hate the round face and chipmunk cheeks.
I hate the high blood pressure.
I hate the red face.
I only have to take it 5 more times...twice this session and three times in my final session, so that's all good.
However, what I'm noticing with this cocktail is that I get my smack-down hangover before I'm done with the steroids. With the last two infusions, the smackdown came on day 3, the middle of the steroids. Generally, the rule of thumb is it comes the day after finishing the steroids. And it lasts about a full week...hangover, flu-like symptoms. Last time it lasted 1 day of significant shite...and two days of just feeling under the weather. This time it is just generally worse all around.
Whatever. Nothing much I can do about it. I really hope, though, that I never have to go through this again. I'm not sure how much more fortitude I have.
I think I'd have more if it weren't February. I just want warmth radiating down on me. I'd kill to sit in the sun about now.
But I do so love not puking or feeling like I'm going to puke.
I hate the round face and chipmunk cheeks.
I hate the high blood pressure.
I hate the red face.
I only have to take it 5 more times...twice this session and three times in my final session, so that's all good.
However, what I'm noticing with this cocktail is that I get my smack-down hangover before I'm done with the steroids. With the last two infusions, the smackdown came on day 3, the middle of the steroids. Generally, the rule of thumb is it comes the day after finishing the steroids. And it lasts about a full week...hangover, flu-like symptoms. Last time it lasted 1 day of significant shite...and two days of just feeling under the weather. This time it is just generally worse all around.
Whatever. Nothing much I can do about it. I really hope, though, that I never have to go through this again. I'm not sure how much more fortitude I have.
I think I'd have more if it weren't February. I just want warmth radiating down on me. I'd kill to sit in the sun about now.
Thursday, February 18, 2010
Verklempt
I've been moved to speechlessness a lot late. My posse has been awesome, both the face to face group here in town and the online group. I'm really moved.
Even more, people have really come through for Tynan and his jump rope fundraiser for Haiti. He raised $312!
He's also speechless. And he plans to jump his heart out tomorrow.
Thank you, from the bottom of our hearts.
Even more, people have really come through for Tynan and his jump rope fundraiser for Haiti. He raised $312!
He's also speechless. And he plans to jump his heart out tomorrow.
Thank you, from the bottom of our hearts.
Tuesday, February 16, 2010
One Step Closer to the End
A year of suck. At times, I think it is going to be longer than a year. In fact, by the time I'm finished with all my herceptin infusions, it will be more like 18 months. I don't even know when I'll start those back up again, and I've only done 6 of the 17 total. I understand, though, that herceptin is a piece of cake compared to everything else, though, so I'm not too concerned.
All that aside, I'm one step closer to finishing the year of suck. Today was my last tissue expander expansion. I actually asked for the last *2* expansions to be done today, which I'm sort of regretting right now as I sit here quite uncomfortable. That was 120 ml of saline injected on both sides. That's about 4 oz. Or enough fluid to make homeland security nervous when carried on a plane, since they've lowered the permitted amount of fluid from 4 oz to 3 oz.
Total amount in expanders=18.25 oz per side. In honor of the Olympics, here is a concrete example of 540 ml. In USAmerican terms, it's more like this. Or, two-three oz more than a pint.
Regardless, it's over. My plastic surgeon is very happy. Very. She took pictures. She brought others in to see. She's excited about doing the final reconstruction(s) and says my immediate reconstruction is maybe her best work. She tried a new technique that, ultimately, should give a much more natural look. By doing vertical incisions, she was able to create a more natural shelf (I guess. I don't have a lot of experience with this), and save a lot more skin. I'm not quite as happy. Right now, I have waaaay more boob than I'm happy with. I wanted itty-bitty titties. Plastic surgeons, though, are very concerned about aesthetics. She wants to give me what is "most ideal" for my body type. Whatever. I can put up with this size until June, but when I have my reconstruction, down they go. My breasts have given me enough difficulty. It's time for them to become something I don't have to think about any more than necessary.
I thought chemo would be finished in November, and was horribly disappointed to find out I needed to do 4 extra rounds. I have two more of those to go.
But the big surgery is finished, and I"m fully recovered.
The expansions are finished and the discomfort will go away in a few days. Truthfully, this is really the first time I've had any significant discomfort. Compared to other treatment induced discomforts, this is nothing.
Chemo this week, and then once more two weeks from now, and that stage will be finished. It had better be finished.
Then radiation, which I am expecting to be nothing more than some discomfort, tiredness, but mostly just something I have to do every day for 6 weeks, give or take, is forthcoming.
I'm trusting my expander will survive radiation.
I'm trusting that I'll survive radiation, and that they won't burn a hole in my heart, lungs, or chest. I'm trusting that I won't develop cancer from the radiation. I'm trusting that this will all be behind me before July 20. Second week of August at the latest.
If all goes as planned, I have my pre-op reconstruction appointment with the plastic on May 18, and surgery would be within the month.
If all goes as planned.
Anyway, I'm one step closer as of today.
All that aside, I'm one step closer to finishing the year of suck. Today was my last tissue expander expansion. I actually asked for the last *2* expansions to be done today, which I'm sort of regretting right now as I sit here quite uncomfortable. That was 120 ml of saline injected on both sides. That's about 4 oz. Or enough fluid to make homeland security nervous when carried on a plane, since they've lowered the permitted amount of fluid from 4 oz to 3 oz.
Total amount in expanders=18.25 oz per side. In honor of the Olympics, here is a concrete example of 540 ml. In USAmerican terms, it's more like this. Or, two-three oz more than a pint.
Regardless, it's over. My plastic surgeon is very happy. Very. She took pictures. She brought others in to see. She's excited about doing the final reconstruction(s) and says my immediate reconstruction is maybe her best work. She tried a new technique that, ultimately, should give a much more natural look. By doing vertical incisions, she was able to create a more natural shelf (I guess. I don't have a lot of experience with this), and save a lot more skin. I'm not quite as happy. Right now, I have waaaay more boob than I'm happy with. I wanted itty-bitty titties. Plastic surgeons, though, are very concerned about aesthetics. She wants to give me what is "most ideal" for my body type. Whatever. I can put up with this size until June, but when I have my reconstruction, down they go. My breasts have given me enough difficulty. It's time for them to become something I don't have to think about any more than necessary.
I thought chemo would be finished in November, and was horribly disappointed to find out I needed to do 4 extra rounds. I have two more of those to go.
But the big surgery is finished, and I"m fully recovered.
The expansions are finished and the discomfort will go away in a few days. Truthfully, this is really the first time I've had any significant discomfort. Compared to other treatment induced discomforts, this is nothing.
Chemo this week, and then once more two weeks from now, and that stage will be finished. It had better be finished.
Then radiation, which I am expecting to be nothing more than some discomfort, tiredness, but mostly just something I have to do every day for 6 weeks, give or take, is forthcoming.
I'm trusting my expander will survive radiation.
I'm trusting that I'll survive radiation, and that they won't burn a hole in my heart, lungs, or chest. I'm trusting that I won't develop cancer from the radiation. I'm trusting that this will all be behind me before July 20. Second week of August at the latest.
If all goes as planned, I have my pre-op reconstruction appointment with the plastic on May 18, and surgery would be within the month.
If all goes as planned.
Anyway, I'm one step closer as of today.
What goes around, comes around (eventually, maybe, if the stars all align)
Someone posted this link to facebook, and I said that it is a good reminder for interacting with teens as well. Then I started adapting this list for teens. However, upon further thought, I think that this list works for all ages and not just for raising children.
Would it hurt any of us to "talk less, ask more, and wait" when interacting with anyone, even other adults? It would probably benefit all of us who are in relationships to do so.
Or what about "Give undivided attention; don't just occupy the same space?" We'd all benefit from more of that.
"Take the other's perspective" and "Change the way you see behavior" is all about assuming positive intent. I really think many of us give more benefit to friends than to our family and loved ones, but still, the world would be a better place if we didn't look upon each other so judgmentally and were more willing to walk a mile in another's shoes.
Would it hurt any of us to "talk less, ask more, and wait" when interacting with anyone, even other adults? It would probably benefit all of us who are in relationships to do so.
Or what about "Give undivided attention; don't just occupy the same space?" We'd all benefit from more of that.
"Take the other's perspective" and "Change the way you see behavior" is all about assuming positive intent. I really think many of us give more benefit to friends than to our family and loved ones, but still, the world would be a better place if we didn't look upon each other so judgmentally and were more willing to walk a mile in another's shoes.
Monday, February 15, 2010
two months ago tomorrow
I had my surgery. I can't even really remember the discomfort; I have full range of motion; I can say "that is behind me now."
Except my hand still hurts and is still swollen where the nurse screwed up the IV.
Really, after two full months?
Except my hand still hurts and is still swollen where the nurse screwed up the IV.
Really, after two full months?
Isn't it ironic?
No, it's just crappy luck.
I've been looking to buy a Buddha statue for quite some time. Today, www.buddhagroove.com had a sale and also happened to have a statue that I liked. I was set to go.
Meanwhile, one of my sons--who shall go unnamed to protect his reputation--put in an unauthorized bid on something on ebay.
Being unable to pay for both my statue and his ebay crap, I had to hold off on placing my order until the ebay bid was resolved, which happened shortly after midnight.
The sale was over by then.
I'm trying not to take it too hard.
You know, attachment and suffering and all that.
On the other hand, I wanted to make him suffer which probably didn't foster his attachment to me at the time. Fortunately, his empathy kicked in which redeemed him somewhat. He'll never do that again, and I probably don't need a statue afterall.
I'm sure this will be funny in time.
I've been looking to buy a Buddha statue for quite some time. Today, www.buddhagroove.com had a sale and also happened to have a statue that I liked. I was set to go.
Meanwhile, one of my sons--who shall go unnamed to protect his reputation--put in an unauthorized bid on something on ebay.
Being unable to pay for both my statue and his ebay crap, I had to hold off on placing my order until the ebay bid was resolved, which happened shortly after midnight.
The sale was over by then.
I'm trying not to take it too hard.
You know, attachment and suffering and all that.
On the other hand, I wanted to make him suffer which probably didn't foster his attachment to me at the time. Fortunately, his empathy kicked in which redeemed him somewhat. He'll never do that again, and I probably don't need a statue afterall.
I'm sure this will be funny in time.
Sunday, February 14, 2010
Thursday, February 11, 2010
Side Effects Be Damned, pt. 2 (lymphedema update)
I saw a "lymphedema OT" 1.5 weeks ago, and the visit just didn't sit well with me. The OT seemed quite extremist, and I got the distinct impression that she still believed in the "pamper the arm" method of treatment, contrary to more recent research (which she wasn't well versed in). She also displayed an attitude of "if it's going to happen, then it's going to happen, but meanwhile, let's let it become fixated on avoiding it and letting it become a major focus of your already stressful existence...." I was sent home without a lymphedema sleeve recommendation but with mummy wrapping, when it really didn't seem my arm was that bad. I distinctly felt that the woman did not listen to me.
So, on the recommendations of three other people, I went to a different OT today, and the results were quite different. She measured and noticed that the difference isn't as large as the original measurements. In fact, there's swelling on my right (good) side in places, and she seemed genuinely interested as to why that might be, and recommended that I just get a sleeve for that arm, too, since regardless of why it is swollen, chemo eats lymph nodes and, therefore, I might have some minor lympho going on there. Exactly what I was trying to explain to OT #1.
OT #2 today said "no problem." No need to do anything special. No need to do special exercises or massage, especially not multiple times a day.
Of course, that doesn't mean, as all the studies show, that lymphedema is NOT something to be concerned about. Once I start radiation, the odds of developing it greatly increase. It can show up at any time over the rest of my life. I'll always need to be concerned about injury and infection to my left arm. But I don't need to freak out. I don't do freak out well.
I feel greatly relieved.
So, on the recommendations of three other people, I went to a different OT today, and the results were quite different. She measured and noticed that the difference isn't as large as the original measurements. In fact, there's swelling on my right (good) side in places, and she seemed genuinely interested as to why that might be, and recommended that I just get a sleeve for that arm, too, since regardless of why it is swollen, chemo eats lymph nodes and, therefore, I might have some minor lympho going on there. Exactly what I was trying to explain to OT #1.
OT #2 today said "no problem." No need to do anything special. No need to do special exercises or massage, especially not multiple times a day.
Of course, that doesn't mean, as all the studies show, that lymphedema is NOT something to be concerned about. Once I start radiation, the odds of developing it greatly increase. It can show up at any time over the rest of my life. I'll always need to be concerned about injury and infection to my left arm. But I don't need to freak out. I don't do freak out well.
I feel greatly relieved.
Wednesday, February 10, 2010
Round 2, session 2, day 6
Ugh.
Chemo smackdown seems to be increasing.
When I woke up this morning, all I could think was "The Fatigue, she is here." I was just as tired as if I'd been up all night. I was even too tired to read. Too tired to read much of anything, even a mystery novel full of recipes.
Yesterday, I was feeling a little hungoverish. Today, it's about as bad as the "bad" day on Sunday. It really is cumulative. My tongue is smooth, which means I don't taste much of anything. That's pretty frustrating, at least psychologically, because I have this gut level feeling that if I could satisfy a craving, I'd feel better.
There''s no rhyme nor reason for the things that sound good to me. Earlier, it was baked tomatoes. ::meh:: I forgot the black olives. It was OK, but not satisfying. Then, believe it or not, I thought that cottage cheese and grape jelly would be awesome! Unfortunately, I couldn't taste the jelly. How disappointing was that? Next, I dug out the forgotten black olives. Only I couldn't taste them.
Now nothing sounds good. And I don't feel like getting out of this chair. Or talking. Or even keeping my eyes open. For gosh sakes! This is day 6!!!! Only 8 more days until I start it all again.
Chemo smackdown seems to be increasing.
When I woke up this morning, all I could think was "The Fatigue, she is here." I was just as tired as if I'd been up all night. I was even too tired to read. Too tired to read much of anything, even a mystery novel full of recipes.
Yesterday, I was feeling a little hungoverish. Today, it's about as bad as the "bad" day on Sunday. It really is cumulative. My tongue is smooth, which means I don't taste much of anything. That's pretty frustrating, at least psychologically, because I have this gut level feeling that if I could satisfy a craving, I'd feel better.
There''s no rhyme nor reason for the things that sound good to me. Earlier, it was baked tomatoes. ::meh:: I forgot the black olives. It was OK, but not satisfying. Then, believe it or not, I thought that cottage cheese and grape jelly would be awesome! Unfortunately, I couldn't taste the jelly. How disappointing was that? Next, I dug out the forgotten black olives. Only I couldn't taste them.
Now nothing sounds good. And I don't feel like getting out of this chair. Or talking. Or even keeping my eyes open. For gosh sakes! This is day 6!!!! Only 8 more days until I start it all again.
The Hole
Tomorrow will mark the second anniversary of my mother's death.
It seems there should be something else to say about that.
There isn't.
Oddly, in a way, I'm glad she is gone and not having to deal with my illness and treatment. What a horrible thing to say, but also what a horrible thing to experience, watching your child being ill, unable to make it better, being restricted by your own illness, and having no assurance of a positive outcome.
She would want to be here to help, but due to her own illness, which she battled quite bravely and successfully for more years than anticipated, she wouldn't have the strength to really help run this family. In good health, she was a whirlwind. But her last two or three years were different, and she tired quickly.
The boys loved her. She was a great cook. As Aidan said at her funeral, "She out jammed Smucker's."
It seems there should be something else to say about that.
There isn't.
Oddly, in a way, I'm glad she is gone and not having to deal with my illness and treatment. What a horrible thing to say, but also what a horrible thing to experience, watching your child being ill, unable to make it better, being restricted by your own illness, and having no assurance of a positive outcome.
She would want to be here to help, but due to her own illness, which she battled quite bravely and successfully for more years than anticipated, she wouldn't have the strength to really help run this family. In good health, she was a whirlwind. But her last two or three years were different, and she tired quickly.
The boys loved her. She was a great cook. As Aidan said at her funeral, "She out jammed Smucker's."
As a family, we are working to incorporate bits and pieces of her into our present lives. We've a few select pieces of furniture that were special to her that we are making work with out stuff; I have some of her kitchen utensils that have been in my life as long as I can remember.
The hole her passing left in my life is not nearly as gaping as it was two, even one, year ago. Clearly, healing is taking place.
There are days when I really want my mommy. But more so now, it's a relief to know that my illness and treatment won't cause her any suffering.
The hole her passing left in my life is not nearly as gaping as it was two, even one, year ago. Clearly, healing is taking place.
There are days when I really want my mommy. But more so now, it's a relief to know that my illness and treatment won't cause her any suffering.
In her honor, the boys and I will be making "grandma food" for dinner tomorrow. The specifics haven't been worked out. She wasn't a gourmet cook. Her food was every-day, down home cooking. We all loved it. Wish I could find her recipe for Swedish Tea Ring. How could that just disappear?
I think the vote is tied for "Burger Bean Cups" and "Hamburger Stroganoff." Like I said, nothing fancy. But her love language sure was food. And her famous coffee cake, which I won't try to make more healthy. If I had rhubarb, I'd make a rhubarb pie. Maybe Aidan and I will make some strawberry jam, just a little batch, this weekend. Of course, buying strawberries out of season will cause her to turn in her grave (or churn her ashes).
I think the vote is tied for "Burger Bean Cups" and "Hamburger Stroganoff." Like I said, nothing fancy. But her love language sure was food. And her famous coffee cake, which I won't try to make more healthy. If I had rhubarb, I'd make a rhubarb pie. Maybe Aidan and I will make some strawberry jam, just a little batch, this weekend. Of course, buying strawberries out of season will cause her to turn in her grave (or churn her ashes).
One skill I wish I'd learned from her is the ability to open a cupboard, fridge, freezer, or pantry and immediately know what can be made from the odd ingredients in there. Heck, just being able to remember what is behind closed doors would be a good place to start. I don't ever remember her saying, "I have to run to the store to get...X...so I can make...Y...." She'd just make do and it would work out. Not quite so much for me. I can barely remember what we have in the house, what I'd planned to make with it, and I almost always am missing some ingredient.
Meanwhile, we just keep plugging along, missing her, and making do without her in other ways.
I love and miss you, Mom.
Monday, February 8, 2010
Obnoxious favor to ask
I've been slacker mom this school year. In fact, before the first day, I wrote an email to Tynan's teachers basically saying, "He's in your hands this year. Don't screw him up too much."
Now, his school is doing a jump rope marathon to raise funds for Haiti relief efforts. Usually this February event is to raise funds for the American Heart Association.
Anyway, the whole jump rope thing has been quite traumatic for Tynan, who has never learned to jump rope. I know he's not alone in this, as at least two of his close relatives can't either. For the record, I am not one of them, and this challenge seems to come from the last half of his last name.....
Anyway, after being humiliated in school, a gnarly email exchange between me and his gym teacher, and quite a few hours in the cold garage with a sometimes less than sympathetic older brother (one of which CAN jump rope), he's gotten up his nerve to do the dang marathon (I was just going to take him out of school, since the gym teacher said he couldn't hoola-hoop for Haiti--which I, personally, think has a better ring to it).
So, if anyone would like to sponsor him, let me know. It would be greatly appreciated. He has shed more tears over this damn jump roping requirement than anything else involved with school, and believe me, he has tears a-plenty where school is concerned.
Now, his school is doing a jump rope marathon to raise funds for Haiti relief efforts. Usually this February event is to raise funds for the American Heart Association.
Anyway, the whole jump rope thing has been quite traumatic for Tynan, who has never learned to jump rope. I know he's not alone in this, as at least two of his close relatives can't either. For the record, I am not one of them, and this challenge seems to come from the last half of his last name.....
Anyway, after being humiliated in school, a gnarly email exchange between me and his gym teacher, and quite a few hours in the cold garage with a sometimes less than sympathetic older brother (one of which CAN jump rope), he's gotten up his nerve to do the dang marathon (I was just going to take him out of school, since the gym teacher said he couldn't hoola-hoop for Haiti--which I, personally, think has a better ring to it).
So, if anyone would like to sponsor him, let me know. It would be greatly appreciated. He has shed more tears over this damn jump roping requirement than anything else involved with school, and believe me, he has tears a-plenty where school is concerned.
Round 2, session 2, day 4
Hair is starting to fall out. Maybe this time I'll just pull it all out in anger? Or should I be more dignified?
Sunday, February 7, 2010
Round 2, session 2, day 2
Hangover has begun. The only thing that helps is protein. But nothing sounds good except for bacon and sausage patties. I need to make something for the fam to take to a Superbowl party.
Louis can't help. He's doing taxes. Must get our refund before money runs out. Yes, he's back at work, but his paychecks will be less than 1/2 of what his previous paychecks were. My take home pay is significantly less, due to increased health insurance and vastly increased flex funds taken out.
So much for remodelling the bathroom (have I spoken here as to how stupid the layout in our otherwise large bathroom is?) and getting replacement windows upstairs and some more electrical outlets.
Allow me to digress about our bathroom. We only have one. Mostly, that's not a problem. Maybe, someday, when we remodel the garage into "basement replacement living space", we'll put another bathroom in out there. But maybe not. It's not like people are knocking down the doors to clean bathrooms here, so I see no real need to have more than one. It's not like the boys are fighting over who needs the mirror. And, the people who lived here before had 3 girls and 2 boys, and they managed with the extra sink in the laundry room.
But the layout is stupid. There's a tub. And a toilet right next to it! So, when one takes a bath, one's head is mere inches from the toilet seat. Not too bad since I figured out how to use the steamer with some bleach to clean around the toilet, but really, not a good configuration for a house with 4 males. I mitigate the potential smell by candles. But still, it's not what I would choose. Then there's the shower stall. It's tiny. It's old. I've always hated shower stalls. It's tiny. People over a certain height can't bend over and wash their feet. It's tiny. There's no place to really put shampoo or anything, except these handrails that run around the sides. I hate it. I hate cleaning it. The kids hate cleaning it. It's just stupid. But we couldn't put a large one in because the sink is next to it.
In my dream, and with money not an option, I''d replace the tub and add in a shower, but still manage to keep the window over the tub. The tub would be insulated so the bathwater stays warm much longer. Maybe I'd get one of those walk in tubs for the elderly that doubles as a shower stall. Then, I'd put the toilet over where the shower stall is now, maybe with some sort of little half wall to block it from view.
and I'd get rid of the mirror on the back of the door that is directly across from the tub. Right now, I hand a sheet over it. Who wants to look at themselves in a full length mirror while they bathe? Certainly not I.
Now back to food for the superbowl party....
Louis can't help, he's doing taxes. Aidan can't help, he's puking. Nathan is still in bed at 1:08 pm. I like to let him sleep some times. I firmly believe that nature has designed teen boys to sleep during the day and be up at night. Plus, I think he's growing again.
Since Aidan is puking, we've asked the friends where Tynan spent the night if he could stay there longer today. So, Tynan can't help.
So, it's up to me. Maybe a coffee cake.
Louis can't help. He's doing taxes. Must get our refund before money runs out. Yes, he's back at work, but his paychecks will be less than 1/2 of what his previous paychecks were. My take home pay is significantly less, due to increased health insurance and vastly increased flex funds taken out.
So much for remodelling the bathroom (have I spoken here as to how stupid the layout in our otherwise large bathroom is?) and getting replacement windows upstairs and some more electrical outlets.
Allow me to digress about our bathroom. We only have one. Mostly, that's not a problem. Maybe, someday, when we remodel the garage into "basement replacement living space", we'll put another bathroom in out there. But maybe not. It's not like people are knocking down the doors to clean bathrooms here, so I see no real need to have more than one. It's not like the boys are fighting over who needs the mirror. And, the people who lived here before had 3 girls and 2 boys, and they managed with the extra sink in the laundry room.
But the layout is stupid. There's a tub. And a toilet right next to it! So, when one takes a bath, one's head is mere inches from the toilet seat. Not too bad since I figured out how to use the steamer with some bleach to clean around the toilet, but really, not a good configuration for a house with 4 males. I mitigate the potential smell by candles. But still, it's not what I would choose. Then there's the shower stall. It's tiny. It's old. I've always hated shower stalls. It's tiny. People over a certain height can't bend over and wash their feet. It's tiny. There's no place to really put shampoo or anything, except these handrails that run around the sides. I hate it. I hate cleaning it. The kids hate cleaning it. It's just stupid. But we couldn't put a large one in because the sink is next to it.
In my dream, and with money not an option, I''d replace the tub and add in a shower, but still manage to keep the window over the tub. The tub would be insulated so the bathwater stays warm much longer. Maybe I'd get one of those walk in tubs for the elderly that doubles as a shower stall. Then, I'd put the toilet over where the shower stall is now, maybe with some sort of little half wall to block it from view.
and I'd get rid of the mirror on the back of the door that is directly across from the tub. Right now, I hand a sheet over it. Who wants to look at themselves in a full length mirror while they bathe? Certainly not I.
Now back to food for the superbowl party....
Louis can't help, he's doing taxes. Aidan can't help, he's puking. Nathan is still in bed at 1:08 pm. I like to let him sleep some times. I firmly believe that nature has designed teen boys to sleep during the day and be up at night. Plus, I think he's growing again.
Since Aidan is puking, we've asked the friends where Tynan spent the night if he could stay there longer today. So, Tynan can't help.
So, it's up to me. Maybe a coffee cake.
Saturday, February 6, 2010
Need ideas for blog entries
What to write about...I'm feeling blank.....what do you want to hear about? How can I amuse you?
Friday, February 5, 2010
Round 2, session 2, day 1
Good infusion today. Got to watch two episodes of Big Love and came home to a wonderfully tidy and clean house. I love the three friends who have helped with that through all of this more than Reese's Peanut Butter cups. (More evidence polygamy would work for me. And I really truly do appreciate them and would make sure they knew it...)
My blood counts were "good." My hemoglobin was lower than last time around. It's already dropped to 9.2. If I start to feel bad, there are orders written for an "iron shot."
The infusion nurse told me to expect to feel much worse this time around. Last round, different cocktail, the first two sessions left me feeling the crappiest. The last two left me the most fatigued. The two in the middle were ::meh::. Not too much hangover feeling, tolerable fatigue, mostly just bone and joint pain and neuropathy. This time, I guess all the effects accumulate. It'll all be over sooner rather than later--I'm almost halfway. This was my second of two infusions, but until the crappy stage passes, I won't consider it half over. I'll still have those crappy days after the last infusion, and last time around, I felt crappy longer after the last than after the first and second.
Gotta love pharmaceuticals. Although the cost can be exorbitant at times, they make life pretty damn good. I no longer can remember why I didn't used to like them...
My blood counts were "good." My hemoglobin was lower than last time around. It's already dropped to 9.2. If I start to feel bad, there are orders written for an "iron shot."
The infusion nurse told me to expect to feel much worse this time around. Last round, different cocktail, the first two sessions left me feeling the crappiest. The last two left me the most fatigued. The two in the middle were ::meh::. Not too much hangover feeling, tolerable fatigue, mostly just bone and joint pain and neuropathy. This time, I guess all the effects accumulate. It'll all be over sooner rather than later--I'm almost halfway. This was my second of two infusions, but until the crappy stage passes, I won't consider it half over. I'll still have those crappy days after the last infusion, and last time around, I felt crappy longer after the last than after the first and second.
Gotta love pharmaceuticals. Although the cost can be exorbitant at times, they make life pretty damn good. I no longer can remember why I didn't used to like them...
Thursday, February 4, 2010
Why I like my kids' friends
Teen age boys frequently get a bad rap. Some days, it would be really easy to not have much good to say about them. They tend to smell, although that lessens the older they get. They can certainly be noisy. And sometimes they can act brain damaged. Although their bodies may look adult and mature, and although they verbalize that they are mature and ready to take on the world, as the author of this website points out, adolescence is "a time when brain changes can result in high risk behaviors, addiction, vulnerability, and mental illness." So, yes, teens are a little crazy. Teen boys have their own type of craziness. Seeing as there is a preponderance of males in my family, things get a little crazy here at times. Add in other people's teen boys and crazy just might not be the most precise word. Lunatic? Demented? Maniacal?
Yet, in general, these are wonderful people.
One thing about adolescents is that they sometimes have a harder time than adults stifling that voice in their head. Oops! Out pop things that adults might never say. Oh, we'd think it, but we've learned (mostly) to keep those ideas in our heads. Some of us are better at this than others. I am particularly challenged in this realm, but I still do a better job than most teens.
So why do I like my kids' friends so much? Because they are honestly good people. And also because they joke with me about cancer...."Oh, yeh, cancer lady says we have to...how can we say no?"
I also like them because they aren't freaked out by my baldness or my being in bed or in pajamas in the middle of the day. If my bedroom door is open, some of them will even just waltz right in, sit on the foot of the bed, and start talking. They are willing to be around us, which is more than I can say about a handful of my adult friends (only a small handful....but still).
I like them because they laugh. A lot.
I like them because they are smart and capable critical thinkers. They have fixed more than one computer issue for me, as well as helped figure out car troubles and solve other problems.
I like them because they are capable of interesting conversations. Sure, a lot of their talk centers on girls and sports, but given the opportunity, they also have a lot to say about life, love, family, politics, the future, religion, literature, film, and society in general.
I like them because they are strong. There's nothing like having strong people around to do things that require strength;)
I like them because they take out the trash.
I like them because they are competitive. They push each other to greater heights (sometimes greater heights of stupidity).
I like them because they are good friends. For the most part, my boys have been friends with their friends for quite a few years. We were looking at soccer pictures as we were packing to move in April and May of last year, and the same faces kept popping up over and over. Nathan has played soccer with some of his friends since he was 7. Aidan used to nap with one of his friends when they were toddlers and I babysat the other boy.
I like them because even when they've been in trouble with the law, it's all been in the name of good fun. Pardon me for thinking getting arrested for a snowball fight or skateboarding in the university library aren't significant crimes.
I like them because they are willing to hang out in our less than luxurious home.
I like them because, for the most part, they treat Tynan pretty well and let him hang out with them. In fact, most of them probably treat him better than his own brothers do. This is a mixed blessing. See above about that inability to filter what they are thinking from what they are saying. Hence, Tynan has had an education many grade school age kids haven't had.
I like them because they don't smoke and drink. Let's face it kids, we can smell the smoke on you. I don't smell it on these kids.
I like them because they like good music. I like (some) of them because they like less popular, more traditional music.
I like them because they play games. Most of the games are video games, but on occasion, I find the board games have been rearranged, which indicates they had them out. See above about competitiveness.
I like them because they were so very supportive and concerned about Aidan when he got hurt. Phone calls, text messages, rides. One was even so kind that he rode his bike to the hospital and then came home with us, staying by Aidan's side for a day and a half, tending to his every need.
I like them because they infuse energy into our home. Unless they are asleep, the house vibrates with their energy.
I like them because they will also hang out with the rest of the family, watching a movie, instead of isolating themselves in the family room.
I like them because they have household skillz are aren't afraid to use them. I never have to ask twice to get the table set, laundry switched over, dishwasher emptied.
I especially like them because they've been such good support for my boys while I've been in treatment. They've been good support for me, too.
Heck, I like them almost as much as I like my own kids. It's because my kids are so likable that they've chosen such good friends.
Yet, in general, these are wonderful people.
One thing about adolescents is that they sometimes have a harder time than adults stifling that voice in their head. Oops! Out pop things that adults might never say. Oh, we'd think it, but we've learned (mostly) to keep those ideas in our heads. Some of us are better at this than others. I am particularly challenged in this realm, but I still do a better job than most teens.
So why do I like my kids' friends so much? Because they are honestly good people. And also because they joke with me about cancer...."Oh, yeh, cancer lady says we have to...how can we say no?"
I also like them because they aren't freaked out by my baldness or my being in bed or in pajamas in the middle of the day. If my bedroom door is open, some of them will even just waltz right in, sit on the foot of the bed, and start talking. They are willing to be around us, which is more than I can say about a handful of my adult friends (only a small handful....but still).
I like them because they laugh. A lot.
I like them because they are smart and capable critical thinkers. They have fixed more than one computer issue for me, as well as helped figure out car troubles and solve other problems.
I like them because they are capable of interesting conversations. Sure, a lot of their talk centers on girls and sports, but given the opportunity, they also have a lot to say about life, love, family, politics, the future, religion, literature, film, and society in general.
I like them because they are strong. There's nothing like having strong people around to do things that require strength;)
I like them because they take out the trash.
I like them because they are competitive. They push each other to greater heights (sometimes greater heights of stupidity).
I like them because they are good friends. For the most part, my boys have been friends with their friends for quite a few years. We were looking at soccer pictures as we were packing to move in April and May of last year, and the same faces kept popping up over and over. Nathan has played soccer with some of his friends since he was 7. Aidan used to nap with one of his friends when they were toddlers and I babysat the other boy.
I like them because even when they've been in trouble with the law, it's all been in the name of good fun. Pardon me for thinking getting arrested for a snowball fight or skateboarding in the university library aren't significant crimes.
I like them because they are willing to hang out in our less than luxurious home.
I like them because, for the most part, they treat Tynan pretty well and let him hang out with them. In fact, most of them probably treat him better than his own brothers do. This is a mixed blessing. See above about that inability to filter what they are thinking from what they are saying. Hence, Tynan has had an education many grade school age kids haven't had.
I like them because they don't smoke and drink. Let's face it kids, we can smell the smoke on you. I don't smell it on these kids.
I like them because they like good music. I like (some) of them because they like less popular, more traditional music.
I like them because they play games. Most of the games are video games, but on occasion, I find the board games have been rearranged, which indicates they had them out. See above about competitiveness.
I like them because they were so very supportive and concerned about Aidan when he got hurt. Phone calls, text messages, rides. One was even so kind that he rode his bike to the hospital and then came home with us, staying by Aidan's side for a day and a half, tending to his every need.
I like them because they infuse energy into our home. Unless they are asleep, the house vibrates with their energy.
I like them because they will also hang out with the rest of the family, watching a movie, instead of isolating themselves in the family room.
I like them because they have household skillz are aren't afraid to use them. I never have to ask twice to get the table set, laundry switched over, dishwasher emptied.
I especially like them because they've been such good support for my boys while I've been in treatment. They've been good support for me, too.
Heck, I like them almost as much as I like my own kids. It's because my kids are so likable that they've chosen such good friends.
Neuropathy
Since Amy (Pancake Goddess, not my BG Homie Amy) asked....Neuropathy is nerve damage. There are many causes of neuropathy, but in the case of cancer, most people who undergo chemo experience it to one degree or another. There is no one experience that is exactly like another, although it is my understanding that some chemo cocktails share similarities. Many people complain about numbness in their toes. Some equate it to being wrapped in bubble wrap. I don't experience that analogy so much. I do have numbness in my toes, but now it feels more like they have string wrapped around their bases. A friend who has neuropathy in her hands says it feels like she's typing with her toes. I had some hand neuropathy last time around with chemo. It tended not to stay...it would decrease over the three week cycle. It made for clumsy typing, difficulty with zippers, and I was constantly having the dry erase markers fly out of my hand while teaching.
Numbness is an annoyance, especially for people whose immune systems are already compromised due to chemo. After all, we are supposed to know when we injure ourselves, which isn't always possible when you aren't able to feel 100% of sensations. Midway through my last rounds of chemo, I got a hangnail on one of my fingers, and it was red, swollen, and pus filled before I even noticed anything was wrong. That was a good 10 days on antibiotics.
However, neuropathic pain, in my experience, is much, much worse. There is no good way to treat nerve pain, especially if it doesn't stay localized. One of my friends says the bottoms of her feet are so sensitive that she can feel each fiber in the carpet. My toes get so sensitive to pressure that there are only certain types of socks I can wear. At times, my bedding is so uncomfortable, I can't sleep. At other times, my feet feel ice cold. So cold they are almost burning, yet to the touch, they are perfectly fine and normally warm. Right now, I'm wearing wool socks, have my feet under a mound of blankets, yet my feet feel as cold as if I were standing in snow. The only thing that warms them up is hot water. Even using my electric blanket doesn't help. Maybe a heating pad would, but since I also have numbness, that might not be such a great idea.
When I was taking taxotere as part of my cocktail, the pain was quite intense. I likened to to "pain socks." It was as if I were wearing socks of pain...just in that area, pain like my ankles and feet were being crushed. Taxotere also causes muscle pain, and of course, I had that, too. I wasn't really able to distinguish between muscle and bone pain. At times it felt like someone was crushing my long bones of the leg with those crushers used for eating crab legs. I don't think I'll ever be able to eat crab legs again. My joints felt swollen. I'd look at my knees expecting to see them red and swollen, but no. When I'd sit, for instance while driving, the pressure on the backs of my thighs would make my legs hurt like the blood wasn't circulating correctly. My hips have hurt every single day, multiple times. I can't get comfortable. It's like there's always too much pressure somewhere and I can feel my hip bones grinding.
Now, though, with my new cocktail, some of that is decreasing (mostly it's just hip pain now), but now I have the sensation of being stabbed with a large flat head screwdriver...heated to glowing red. These sensations come and go. But they are strong enough to make me gasp. I certainly can't sit still through them. This is just from mid shin down.
Or sometimes, it feels like there's a vibration inside me. Last night, I could have sworn I was standing on my cell phone set to vibrate...and it was vibrating. However, I wasn't standing. And I was talking on my phone at the time.
Another aspect of neuropathy is weakness. Hand weakness is the most irritating for me. Having to have my nine year old open a jar for me is unheard of! I couldn't pull the white plastic pull tab off the frozen orange juice concentrate the other day. Last semester, my hand would get so tired when I was grading that I couldn't write. It would burn. Let's think about that...there isn't much actually writing involved in commenting on a paper at any one time...at least the way I do it. Five or six words, then read more, one more five or six word comment....rarely more than a few sentences at the end. Sometimes I'll be standing, talking to someone who has come to drop off a meal or in line at the grocery store, and suddenly I'll realize my legs are starting to shake. It's a sweeping feeling of weakness. The closest I can compare it to is sometimes when I've had a cold or other minor illness, maybe a little feverish, and ignored it. Then suddenly I just feel like I can't go on and I just need to sit down. Only then I know I can continue. Now, I'm not so sure.
What can be done? Hot baths helped a lot (and now I've been told I can't take them). Codeine helps, somewhat. Vicodin sometimes helps. Tylenol helps more than Motrin. Daylight helps. Somehow, my body knows that it is evening and night. Right now, at 1:30 in the afternoon, I have that annoying cold sensation in my feet, but that's all. By 9:00 this evening, I'll have pain. However, it rarely bothers me after I've managed to get to sleep. If I can sleep, if I wake up in the middle of the night, I rarely have pain. If I don't sleep, it hurts all night. I don't think there has been one pain free day since the second week of August when I got my first infusion. I was still having significant taxotere pain until the end of the steroids from my last infusion. Then the red-hot screwdrivers started. However, I'd take them over the taxotere crab leg utensil pain.
Does this answer your question, Amy?
Numbness is an annoyance, especially for people whose immune systems are already compromised due to chemo. After all, we are supposed to know when we injure ourselves, which isn't always possible when you aren't able to feel 100% of sensations. Midway through my last rounds of chemo, I got a hangnail on one of my fingers, and it was red, swollen, and pus filled before I even noticed anything was wrong. That was a good 10 days on antibiotics.
However, neuropathic pain, in my experience, is much, much worse. There is no good way to treat nerve pain, especially if it doesn't stay localized. One of my friends says the bottoms of her feet are so sensitive that she can feel each fiber in the carpet. My toes get so sensitive to pressure that there are only certain types of socks I can wear. At times, my bedding is so uncomfortable, I can't sleep. At other times, my feet feel ice cold. So cold they are almost burning, yet to the touch, they are perfectly fine and normally warm. Right now, I'm wearing wool socks, have my feet under a mound of blankets, yet my feet feel as cold as if I were standing in snow. The only thing that warms them up is hot water. Even using my electric blanket doesn't help. Maybe a heating pad would, but since I also have numbness, that might not be such a great idea.
When I was taking taxotere as part of my cocktail, the pain was quite intense. I likened to to "pain socks." It was as if I were wearing socks of pain...just in that area, pain like my ankles and feet were being crushed. Taxotere also causes muscle pain, and of course, I had that, too. I wasn't really able to distinguish between muscle and bone pain. At times it felt like someone was crushing my long bones of the leg with those crushers used for eating crab legs. I don't think I'll ever be able to eat crab legs again. My joints felt swollen. I'd look at my knees expecting to see them red and swollen, but no. When I'd sit, for instance while driving, the pressure on the backs of my thighs would make my legs hurt like the blood wasn't circulating correctly. My hips have hurt every single day, multiple times. I can't get comfortable. It's like there's always too much pressure somewhere and I can feel my hip bones grinding.
Now, though, with my new cocktail, some of that is decreasing (mostly it's just hip pain now), but now I have the sensation of being stabbed with a large flat head screwdriver...heated to glowing red. These sensations come and go. But they are strong enough to make me gasp. I certainly can't sit still through them. This is just from mid shin down.
Or sometimes, it feels like there's a vibration inside me. Last night, I could have sworn I was standing on my cell phone set to vibrate...and it was vibrating. However, I wasn't standing. And I was talking on my phone at the time.
Another aspect of neuropathy is weakness. Hand weakness is the most irritating for me. Having to have my nine year old open a jar for me is unheard of! I couldn't pull the white plastic pull tab off the frozen orange juice concentrate the other day. Last semester, my hand would get so tired when I was grading that I couldn't write. It would burn. Let's think about that...there isn't much actually writing involved in commenting on a paper at any one time...at least the way I do it. Five or six words, then read more, one more five or six word comment....rarely more than a few sentences at the end. Sometimes I'll be standing, talking to someone who has come to drop off a meal or in line at the grocery store, and suddenly I'll realize my legs are starting to shake. It's a sweeping feeling of weakness. The closest I can compare it to is sometimes when I've had a cold or other minor illness, maybe a little feverish, and ignored it. Then suddenly I just feel like I can't go on and I just need to sit down. Only then I know I can continue. Now, I'm not so sure.
What can be done? Hot baths helped a lot (and now I've been told I can't take them). Codeine helps, somewhat. Vicodin sometimes helps. Tylenol helps more than Motrin. Daylight helps. Somehow, my body knows that it is evening and night. Right now, at 1:30 in the afternoon, I have that annoying cold sensation in my feet, but that's all. By 9:00 this evening, I'll have pain. However, it rarely bothers me after I've managed to get to sleep. If I can sleep, if I wake up in the middle of the night, I rarely have pain. If I don't sleep, it hurts all night. I don't think there has been one pain free day since the second week of August when I got my first infusion. I was still having significant taxotere pain until the end of the steroids from my last infusion. Then the red-hot screwdrivers started. However, I'd take them over the taxotere crab leg utensil pain.
Does this answer your question, Amy?
Side Effects Be Damned
One potential side effect of having lymph nodes removed is a condition known as lymphedema. It can effect anywhere from 10-20% of patients. Radiation treatments increase the risk of lymphedema. I'm not sure, so don't cite me, but either up to 40% of patients get it or the risk of getting it is increased by 40% or something like that...the number 40 is involved.
One of the side effects of certain chemotherapy treatments is also lymphedema.
There doesn't seem to be consensus as to what determines a true diagnosis of lymphedema....2 cm difference in circumference between the limbs? 4 cm? 2 inches?
My left arm, the one that had lymph nodes removed, is today 3-4 cm larger than my right. This is sucky news. Here I sit with my arm wrapped in compression bandages, padding, a special cotton sleeve thingie like one would put under a cast....
I was expecting to get a compression sleeve, standard fare given to breast cancer patients. I even knew what color I wanted. I'd researched some super cool ones on line and found a distributor in Findlay.
The OT I saw today, supposedly one of the best in the area, thinks my swelling is probably caused by my chemo and should go away, but that in all likelihood it will first get worse, so no compression sleeve for me. Instead, I get these cool bandages that make me look like a burn victim or injury patient.
She also gave me some lymph draining massage techniques and exercises to do....daily, several times, for the rest of my life.
And that's the kicker. Cancer never quits. Like so many chronic conditions, it's a "for the rest of your life" thing.
For the rest of my life, I have to be concerned with injury to my left arm and hand. I have to be concerned about mosquito bites for god's sake. Even a paper cut could be problematic. This is all sort of just hitting me now. I'm supposed to carry band aids and antibiotic ointment with me in case I nick a cuticle or get a paper cut. Some therapists even recommend avoiding hot showers, hot baths, the sun (because it is warming)....I love the warmth of the sun. I detest cold. I meditate in my bath. I doubt I will ever be good enough at meditating to do it in a cool bath. Hell no, not an option. I don't do cool baths. I'd rather not bathe. I'd rather not shower.
This is all rather depressing. Highly depressing. The most depressed I've been since finding out I had to do extra chemo. Don't want to get out of bed depressing. Want to eat Pringles and Lawson's Chip Dip depressing.
Hopefully the OT is right and the swelling will resolve itself when I'm finished with chemo because I'm pissed again.
One of the side effects of certain chemotherapy treatments is also lymphedema.
There doesn't seem to be consensus as to what determines a true diagnosis of lymphedema....2 cm difference in circumference between the limbs? 4 cm? 2 inches?
My left arm, the one that had lymph nodes removed, is today 3-4 cm larger than my right. This is sucky news. Here I sit with my arm wrapped in compression bandages, padding, a special cotton sleeve thingie like one would put under a cast....
I was expecting to get a compression sleeve, standard fare given to breast cancer patients. I even knew what color I wanted. I'd researched some super cool ones on line and found a distributor in Findlay.
The OT I saw today, supposedly one of the best in the area, thinks my swelling is probably caused by my chemo and should go away, but that in all likelihood it will first get worse, so no compression sleeve for me. Instead, I get these cool bandages that make me look like a burn victim or injury patient.
She also gave me some lymph draining massage techniques and exercises to do....daily, several times, for the rest of my life.
And that's the kicker. Cancer never quits. Like so many chronic conditions, it's a "for the rest of your life" thing.
For the rest of my life, I have to be concerned with injury to my left arm and hand. I have to be concerned about mosquito bites for god's sake. Even a paper cut could be problematic. This is all sort of just hitting me now. I'm supposed to carry band aids and antibiotic ointment with me in case I nick a cuticle or get a paper cut. Some therapists even recommend avoiding hot showers, hot baths, the sun (because it is warming)....I love the warmth of the sun. I detest cold. I meditate in my bath. I doubt I will ever be good enough at meditating to do it in a cool bath. Hell no, not an option. I don't do cool baths. I'd rather not bathe. I'd rather not shower.
This is all rather depressing. Highly depressing. The most depressed I've been since finding out I had to do extra chemo. Don't want to get out of bed depressing. Want to eat Pringles and Lawson's Chip Dip depressing.
Hopefully the OT is right and the swelling will resolve itself when I'm finished with chemo because I'm pissed again.
Monday, February 1, 2010
Good Beyond Words
I get fixated on certain foods and can't get enough of them. Right now, those foods are Naslada Bistro's Shopska salad and Layered Tomato. I could eat the Layered Tomato all day, every day.
In fact, I think I shall go to the store and make both right now, even though I had both for lunch.
In fact, I think I shall go to the store and make both right now, even though I had both for lunch.
Why Polygamy Would Be a Good Thing for My Family
I'm doing a happy sway today. Louis goes to his new job. Went. Whatever. He's "at work" right now for the first time in months. All day. Gone. Out of the house. Doing something he's good at. Where people should appreciate him. Where he should get kudos for being competent. Away from me. In fact, for the first time in a loooooooooong time, I'm actually home alone. Of course, Nathan will be home from class soon and ruin that, but nonetheless, I'm home alone, and I'm going to make a rule that Nate has to stay on campus between his morning classes so I have more time home alone.
I'm not doing a full blown happy dance, though, because it appears there's chaos and upheaval with his new employer, and I'm waiting for the next round of bad news. Plus, he's making 1/2 of his previous salary. One-half of not enough is significantly less than enough. Since March, when the university first cut his original position, we've been on pins and needles. When he was working, every day I dreaded his return, waiting to hear that he'd lost his job. It finally happened in a way we didn't expect, and now I'm back to living in fear that he'll lose his job. In a way, he's in a worse position, since he's earning less and now won't have the time in necessary to collect unemployment.
But, he's working. He's not at home. We aren't together.
Don't get me wrong. I love him. If I didn't, I'm not sure we'd have survived allllll the time he's been home since May or June, certainly not the last couple of months since I've been home full time. Yet, our relationship has focused on what I've called "tag team parenting" until this past year. That means, I was home during the day (mostly) and teaching in the late afternoon/evenings, and he was home evenings. That worked well for us. 24/7 has been an adjustment, and I'm done adjusting.
Old dogs, new tricks. All that.
Neither here nor there right now, though. He's at work. I'm at home. R-O-L-A-I-D-S....erm....R-E-L-I-E-F (sorry, my 5th grade teacher also wasn't amused when "relief" was one of our spelling words and the entire class wrote "Rolaids." If you don't understand that reference, you are simply too young.)
However, now I'm flummoxed. Louie first "came home" in September on Family Medical Leave. And he took over a lot of the day-to-day duties that I was finding difficult to juggle between working full time and chemo/cancer. This is why we could use at least one other parent right now. I'm not working this semester, but I still have all those appointments, and this time around, they are more frequent.
I realized as I was going over the schedule last night, that I have an appointment with an Occupational Therapist at precisely the time that I need to take the boys to get allergy shots this week. Even if I didn't have to be at St. V's Hospital at the same time they need to be at Wood County Hospital, I try to avoid waiting rooms during chemo, and the allergist shares space with someone who specializes in respiratory ailments. Call me crazy, but that room must be a cesspool of germs. Not to mention all the kids who tramp through to get shots. Kids are cesspool swimmers. The office staff won't let me drop them off and wait in the car, though, as the kids are minors. I see their point and understand protocol and the law, but it's also not like I've ever been consulted when they've had to treat the kids for reactions. In a mere 10 months, Nathan will be 18 and I could then send them in with him (and the appropriate paperwork). It's not like he'll be getting that much more mature in 10 months, especially since I swear his maturity is devolving at this point.
If there were three parents, chances are one of us could manage to get the kids' allergy shots this week.
Basically, what I need is a stay-at-home mom who is more up to the day-to-day challenges of tending to a family than I am. It's not just the 5 medical appointments I have this week, plus children's activities, housework, etc. This is not a new need of mine. I also don't enjoy the "home" part of tending hearth and home. For years I've wanted a "wife."
Watching Big Love has just reinforced this desire. I can share my man. I might even appreciate him more if he shared time with someone else. I'd have to be "first wife" because I do like to be in control, no questions about that. But otherwise, I'd be perfectly satisfied to have sister-wives and I think my kids would be better off.
At least they'd be getting allergy shots regularly. As it stand, once again, I'll be known as "that" mom who doesn't take her kids to get shots....
I'm not doing a full blown happy dance, though, because it appears there's chaos and upheaval with his new employer, and I'm waiting for the next round of bad news. Plus, he's making 1/2 of his previous salary. One-half of not enough is significantly less than enough. Since March, when the university first cut his original position, we've been on pins and needles. When he was working, every day I dreaded his return, waiting to hear that he'd lost his job. It finally happened in a way we didn't expect, and now I'm back to living in fear that he'll lose his job. In a way, he's in a worse position, since he's earning less and now won't have the time in necessary to collect unemployment.
But, he's working. He's not at home. We aren't together.
Don't get me wrong. I love him. If I didn't, I'm not sure we'd have survived allllll the time he's been home since May or June, certainly not the last couple of months since I've been home full time. Yet, our relationship has focused on what I've called "tag team parenting" until this past year. That means, I was home during the day (mostly) and teaching in the late afternoon/evenings, and he was home evenings. That worked well for us. 24/7 has been an adjustment, and I'm done adjusting.
Old dogs, new tricks. All that.
Neither here nor there right now, though. He's at work. I'm at home. R-O-L-A-I-D-S....erm....R-E-L-I-E-F (sorry, my 5th grade teacher also wasn't amused when "relief" was one of our spelling words and the entire class wrote "Rolaids." If you don't understand that reference, you are simply too young.)
However, now I'm flummoxed. Louie first "came home" in September on Family Medical Leave. And he took over a lot of the day-to-day duties that I was finding difficult to juggle between working full time and chemo/cancer. This is why we could use at least one other parent right now. I'm not working this semester, but I still have all those appointments, and this time around, they are more frequent.
I realized as I was going over the schedule last night, that I have an appointment with an Occupational Therapist at precisely the time that I need to take the boys to get allergy shots this week. Even if I didn't have to be at St. V's Hospital at the same time they need to be at Wood County Hospital, I try to avoid waiting rooms during chemo, and the allergist shares space with someone who specializes in respiratory ailments. Call me crazy, but that room must be a cesspool of germs. Not to mention all the kids who tramp through to get shots. Kids are cesspool swimmers. The office staff won't let me drop them off and wait in the car, though, as the kids are minors. I see their point and understand protocol and the law, but it's also not like I've ever been consulted when they've had to treat the kids for reactions. In a mere 10 months, Nathan will be 18 and I could then send them in with him (and the appropriate paperwork). It's not like he'll be getting that much more mature in 10 months, especially since I swear his maturity is devolving at this point.
If there were three parents, chances are one of us could manage to get the kids' allergy shots this week.
Basically, what I need is a stay-at-home mom who is more up to the day-to-day challenges of tending to a family than I am. It's not just the 5 medical appointments I have this week, plus children's activities, housework, etc. This is not a new need of mine. I also don't enjoy the "home" part of tending hearth and home. For years I've wanted a "wife."
Watching Big Love has just reinforced this desire. I can share my man. I might even appreciate him more if he shared time with someone else. I'd have to be "first wife" because I do like to be in control, no questions about that. But otherwise, I'd be perfectly satisfied to have sister-wives and I think my kids would be better off.
At least they'd be getting allergy shots regularly. As it stand, once again, I'll be known as "that" mom who doesn't take her kids to get shots....
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