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.
Sunday, February 21, 2010
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.
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