4/23/2008 Gardening @ Night #15
15 DOWN, 1 TO GO! My mouth taste like shit, but victory makes it sweet.
Wednesday, April 23, 2008
Wednesday, April 16, 2008
4/16/2008 Gardening @ Night 13
4/16/2008 Gardening @ Night 13
14 DOWN – 2 TO GO
Hi Peeps,
Forgive me people, it has been nearly 4 weeks since my last confession. I’m so sorry I haven’t been able to keep in better touch. But here it is for your reading pleasure ...
HEALTH MATTERS & NEWS of THE WEIRD
So I’m sitting here just now in the chemo room about to get number 14. That light at the end of the tunnel looms, happily, just down the path. In fact I’ve already started my “pre-meds” which are 1st decadron, a steroid to prevent an allergic reaction, 2nd benadryl to prevent an allergic reaction, and last for premeds is pepcid for the tummy. Of course the benadryl makes me so woosey and sleepy that I can’t see straight and I guess the steroid then immediately wakes me up right after that. It’s a funny rollercoaster ride of drugs. Then comes the Taxol and finally Avastin.
I wanted to show you what my blood work results looks like just in case anyone knows what the heck it means and to keep it here for posterity.
So I’ve had this bizarre side effect to Taxol, which I’ve just learned from Sonia, my infusion nurse last week, is typical. It’s that all my fingernails are bruised underneath. They are a pretty color yellow and though I don’t really mind the color, it doesn’t feel so great, very tender. But it’s just on the top side, not where I was expecting it (on my fingertips). My toenails are starting to feel weird as well. I’m going to get a pedicure tomorrow before it gets too intense. Supposedly this will go away after Taxol stops. That would be nice.
But the big news of today was that I was “un-blinded” from my drug study. It turns out that I have indeed been receiving the avastin for these past months AND that I’m in the arm of the study that will continue to get it for the rest of the year. This is undoubtedly good news, however that didn’t stop me from getting teary at the thought that I will have to continue returning here to Gtwn Hospital for infusions every three weeks, 10 more times. In my heart of hearts, I had been wishing to be in the arm that stopped now even though, as Kyle quickly reminded me, that I have the opportunity to get a possibly life-saving drug that others do not have.
Now an hour after getting the news, I see the true heart of the matter really is that I was destined to be emotional about this moment regardless of which arm I was in. It’s just kind of a big moment. I’m so close to finishing with chemo (yes, a great cause for celebration), still, I have a way to go on this journey. Cancer treatment takes a super long time even with a good prognosis. I have to swallow this fact and deal with it. It also feels like I’ve been told to stay on “code Orange” the rest of my life. I had not yet really had to face that concept so squarely until this moment. However, even though I will be returning to the scene of the crime – the West, Research Wing of Gtwn Hospital to get infused – many other things will change for the better just because I will be finished with chemo. Dr. Isaacs told me that I could expect to feel more energetic in a month or so after finishing.
I can’t wait till that happens, as you very well know. I’m just about desperate to feel like my old self again which I will. I need to keep telling myself that, since it turns out I’m not so brave as everyone keeps saying. It turns out I’m a big baby. I need to muster some endurance and put on a happy fucking face, for crying out loud. The hard part really is about to be over. Hello, Superfriends, Justice League? Adele here. Please induct me into your group now. I must be ready and I could sure use the extra mental toughness. Haven’t I passed enough tests yet? What did you say? You want to know what my superhero name is? Ahh, I’m still toying with it. What do you think of “Endura-girl” or maybe “Bemoana”? How does “Whinerwoman” sound?
One more thing to complain about is that now that I see I will continue with avastin, I have to do something about my sinus condition besides taking an endless ammount of Sudafed and benadryl. Did you guys know that these days you have to sign a pledge at the front counter of CVS saying you do not plan to make crack, before they will sell you Sudafed? I didn’t.
HAIR REPORT
I honestly didn’t think I would be making a hair report for a long while but to my surprise I now have something to talk about. Yes, actual visible hair is growing on my head, believe it or not. Though currently, I look like an ad for male pattern baldness, there’s no disputing the fuzz I’ve accrued. Mercedes, the infusion nurse, just told us that once done with Taxol, it should grow back at an even faster rate. Now there’s a lucky star to thank. Somewhere out there during the bright summer, I will be able to go unveiled, naked head, without feeling like my head looks dirty. Stay tuned in the months to come for some time lapse photography of hair growing. Is that like watching grass grow?
Speaking of dirty heads, here’s an ironic twist of fate: we discovered we have lice. Isn’t that a kick in the pants? Well, to be perfectly accurate, Lily and Lucy have lice (our house does not). But let’s do the sunny side/glass half full point of view, it’s really a lucky star. I can’t get lice, since my head does not yet provide a good habitat. And it gives me something else to focus on, literally. I did have to break down and buy some reading glasses so I could see their heads better. Everyday, Kyle and I sit over each kid with a flashlight and tweezers at the ready to hunt down our prey in the great blond forests of their heads. We feel like Horton listening for proof that the Who’s are there. But unlike Horton, we don’t wish to save them. We drown them in a little oceanic bowl of water when we capture them. Or maybe I can go back to a Star Trek analogy. We are seaking out new life but also breaking the prime directive, which is that we must not interfere with another culture. Too bad for them. We must be Romulans or something. It’s so freaky watching the lice scurry around on our kids’ heads. There aren’t so many there still and thanks to Montgomery County’s new policy, whereby the nurse would have to find them within a half inch of there scalps (and she has not), they haven’t missed more than the one day of school when I got the fatefull call. Before this school year it was 100% NO NIT policy. Tomorrow night we’re planning a Special Forces raid with olive oil and shower caps. Wish us luck. Even though I don’t have a significant amount of hair for the nits to cling to, I still have the heebee-geebees and scratch constantly myself.
SAND SUN/BOOK CORNER
Many of you know we went to Key Biscayne for Spring Break. It was a great trip. The warm weather really did do me a lot of good inside my head as well as out. We walked a lot on the beach. The kids (that would include Kyle) played endlessly in the swimming pool. The temps were so warm that I could slip into my daydream while reading DUNE and not have to imagine too hard. In my daydream, Kyle O’Dowd, not Kyle McGlauflin, takes the roll of Paul-Maud Dib, the hero who leads his Fremen desert people to gain control of their home world, of course. I play the part of the his mother, the Lady Jessica, the “Reverend Mother” who sees into the future and the past with a special precience but is powerless to control it. Lily plays Paul’s beloved, Chani, the desert waif who has a tremendous sense of justice. Lucy plays the roll of Alia, Paul’s toddler sister, who startles people with the astounding level of precociousness. You can imagine us there in the hot-white light, blurred figures on the beach, happy with voices that echo quietly in your mind. At least that’s what I did on my vacation. Needless to say, I also am enjoying the book a great deal, thanks Simon. I spent a lot of time lounging with it that week but have not quite finished it. The vacation was a great way to relax in the calm before the storm of birthdays we’ll have in the next couple weeks, thanks Kyle.
APRIL IS ALWAYS A BITCH
I know I shouldn’t be anxious about my children’s birthdays but this just happens to Kyle and I both at this time every year. We can’t help it. As a matter of fact, everything is under control, despite my anxiety. Last night I bought 34 goody bags online, 17 Harry Potter boxes each with round glasses, a lightning bolt tattoo and mini owl stuffed animals; and 17 puppy boxes, each with dog whistle, leash and mini puppy stuffed animals inside. All procured with the click of a button. Lily and pals will be shooting each other at Shadow Land Laser Tag while Lucy and her friends will be prevented from throwing gutter balls by way of gutter guards with the Navy Seals at the Naval Medical Bowling Center. Sounds fun, doesn’t it. OK, so we did take some easy ways out this go-round, using evites instead of my traditional photoshop collage invites, etc, but I think they will not feel this year’s birthday’s were tempered by the fact that their Mom has had cancer and has been exhausted mostly. All in all, the kids remain in great spirits and are VERY excited about their birthdays to come, as they should be.
Since I’m coming to the end of chemo and about to start radiation, I have a lot of Doc Appts these days, which are making things more hectic than normal. I have to get the last inflation of my right boob with the plastic surgeon so that I can go into radiation fully expanded. The other side has to stay put for a bit longer so they can point the laser beam at the correct oblique angle, allowing them to spread the beam across more skin than anything else. The skin is the target since theoretically that is where any cancer is most likely to linger post-op and post-chemo. I also have to see the radiation oncologist so they can “map” my right boob with pinpoint accuracy to where they want to aim it. I will get a dot tattoo that marks me for “alignment”. I also have to get an echo-cardiogram and EKG for use in the avastin drug study, lucky me. And last, I need to follow up on my plaguing sinus issues with the ENT, phew. Not to mention get 2 more chemo infusions besides. I’m tired just thinking about it. But this is IT, the home stretch. And for the record, technically, this is not a registered complaint (or kick in the pants), I’m just documenting my experience.
Another great thing on the calendar is happening today (now Wed). My forth landscape design will be installed in someone’s yard. This time we are planting a woodland garden with a line of sweetbay magnolias as a green screen between two agreeable neighbors in NW DC. I seem to be the Queen of woodland gardens. I’m obliterating grass like there’s no tomorrow. Yesterday, I presented my fifth landscape design, another woodland garden front yard to a lady a few streets away. My friend Dana and I collaborated on that project and the design was truly the better for it. Thanks, Dana! Don’t know when that one will go in. The client has to sign off on it, but she really liked it, so there’re some more lucky stars for me to admire.
MUSIC YOU CAN USE
Ok, here we are now at my favorite part of the update. In the last couple weeks we saw a couple of really superb concerts …
Jens Lekman – aother Swede who’s voice is unbelievable. He tells stories in his music that he pretends are real then he goes out and lives them after the fact. His songs are so funny and convincing. Here's a wonderful song called "Sipping Sweet Nectar", what I will be doing in a couple weeks.
The Dodos (opened for the next band). I had never heard of them before but am now a great fan. The lead singer looks like he’s 16 but sounds like he’s 35 and plays a hard strumming guitar that propels you into another place. This song is called "Fools".
Les Savvy Fav – the lead singer for this old fashioned punker band is insane. He climbed all over the audience and made sound effects between songs. He changed his clothes and disrobed often. I loved his spangled red jacket, so hip and ill-fitting. Here's a cool song called "Brace Yourself", advice I needed at the beginning of this ordeal.
MILESTONE THAT WASN'T
So I had planned to run, walk or crawl the Cherry Blossom 10 miler with my sister, Kyle and Tom, but in the end I bagged it. It was rainy and I was disappointed but too damn tired to do it. It would have been stupid to do it, I know that, but still I wish I could have. I dragged out the decision painfully while my sis patiently came over at 6:30 am to help me sort it out. We even got in the car and drove a block before I called it off. It was good that I decided to bag it because I went back to bed and slept nearly the whole day long. Meanwhile Kyle and Tom went down and ran a very fast paced race. I’m proud of them. So today, to my surprise, I received a picture of “myself” in the mail. It turned out that I did indeed run the race after all. Here I am. But which one is me?
But just you wait, I’ll be ready in June and October, come hell or high water. And Here’s some more good news, our October team is now the biggest team in DC, with 21 participants. Only half the team has begun raising money and we have already raised nearly $30K. It’s time to sign up for June so please join us everyone if you can.
GARDENER”S NOTEBOOK
When we visited Key Biscayne we went to a beautiful garden that happened to have Chihuly blown glass sculpture there. I finally got to see it. His glass goes so wonderfully well in the garden. See for yourself. Seeing this kind of beauty is tantamount to a religious experience for me. It’s really uplifting. I hope you like it too.
14 DOWN – 2 TO GO
Hi Peeps,
Forgive me people, it has been nearly 4 weeks since my last confession. I’m so sorry I haven’t been able to keep in better touch. But here it is for your reading pleasure ...
HEALTH MATTERS & NEWS of THE WEIRD
So I’m sitting here just now in the chemo room about to get number 14. That light at the end of the tunnel looms, happily, just down the path. In fact I’ve already started my “pre-meds” which are 1st decadron, a steroid to prevent an allergic reaction, 2nd benadryl to prevent an allergic reaction, and last for premeds is pepcid for the tummy. Of course the benadryl makes me so woosey and sleepy that I can’t see straight and I guess the steroid then immediately wakes me up right after that. It’s a funny rollercoaster ride of drugs. Then comes the Taxol and finally Avastin.
I wanted to show you what my blood work results looks like just in case anyone knows what the heck it means and to keep it here for posterity.
So I’ve had this bizarre side effect to Taxol, which I’ve just learned from Sonia, my infusion nurse last week, is typical. It’s that all my fingernails are bruised underneath. They are a pretty color yellow and though I don’t really mind the color, it doesn’t feel so great, very tender. But it’s just on the top side, not where I was expecting it (on my fingertips). My toenails are starting to feel weird as well. I’m going to get a pedicure tomorrow before it gets too intense. Supposedly this will go away after Taxol stops. That would be nice.
But the big news of today was that I was “un-blinded” from my drug study. It turns out that I have indeed been receiving the avastin for these past months AND that I’m in the arm of the study that will continue to get it for the rest of the year. This is undoubtedly good news, however that didn’t stop me from getting teary at the thought that I will have to continue returning here to Gtwn Hospital for infusions every three weeks, 10 more times. In my heart of hearts, I had been wishing to be in the arm that stopped now even though, as Kyle quickly reminded me, that I have the opportunity to get a possibly life-saving drug that others do not have.
Now an hour after getting the news, I see the true heart of the matter really is that I was destined to be emotional about this moment regardless of which arm I was in. It’s just kind of a big moment. I’m so close to finishing with chemo (yes, a great cause for celebration), still, I have a way to go on this journey. Cancer treatment takes a super long time even with a good prognosis. I have to swallow this fact and deal with it. It also feels like I’ve been told to stay on “code Orange” the rest of my life. I had not yet really had to face that concept so squarely until this moment. However, even though I will be returning to the scene of the crime – the West, Research Wing of Gtwn Hospital to get infused – many other things will change for the better just because I will be finished with chemo. Dr. Isaacs told me that I could expect to feel more energetic in a month or so after finishing.
I can’t wait till that happens, as you very well know. I’m just about desperate to feel like my old self again which I will. I need to keep telling myself that, since it turns out I’m not so brave as everyone keeps saying. It turns out I’m a big baby. I need to muster some endurance and put on a happy fucking face, for crying out loud. The hard part really is about to be over. Hello, Superfriends, Justice League? Adele here. Please induct me into your group now. I must be ready and I could sure use the extra mental toughness. Haven’t I passed enough tests yet? What did you say? You want to know what my superhero name is? Ahh, I’m still toying with it. What do you think of “Endura-girl” or maybe “Bemoana”? How does “Whinerwoman” sound?
One more thing to complain about is that now that I see I will continue with avastin, I have to do something about my sinus condition besides taking an endless ammount of Sudafed and benadryl. Did you guys know that these days you have to sign a pledge at the front counter of CVS saying you do not plan to make crack, before they will sell you Sudafed? I didn’t.
HAIR REPORT
I honestly didn’t think I would be making a hair report for a long while but to my surprise I now have something to talk about. Yes, actual visible hair is growing on my head, believe it or not. Though currently, I look like an ad for male pattern baldness, there’s no disputing the fuzz I’ve accrued. Mercedes, the infusion nurse, just told us that once done with Taxol, it should grow back at an even faster rate. Now there’s a lucky star to thank. Somewhere out there during the bright summer, I will be able to go unveiled, naked head, without feeling like my head looks dirty. Stay tuned in the months to come for some time lapse photography of hair growing. Is that like watching grass grow?
Speaking of dirty heads, here’s an ironic twist of fate: we discovered we have lice. Isn’t that a kick in the pants? Well, to be perfectly accurate, Lily and Lucy have lice (our house does not). But let’s do the sunny side/glass half full point of view, it’s really a lucky star. I can’t get lice, since my head does not yet provide a good habitat. And it gives me something else to focus on, literally. I did have to break down and buy some reading glasses so I could see their heads better. Everyday, Kyle and I sit over each kid with a flashlight and tweezers at the ready to hunt down our prey in the great blond forests of their heads. We feel like Horton listening for proof that the Who’s are there. But unlike Horton, we don’t wish to save them. We drown them in a little oceanic bowl of water when we capture them. Or maybe I can go back to a Star Trek analogy. We are seaking out new life but also breaking the prime directive, which is that we must not interfere with another culture. Too bad for them. We must be Romulans or something. It’s so freaky watching the lice scurry around on our kids’ heads. There aren’t so many there still and thanks to Montgomery County’s new policy, whereby the nurse would have to find them within a half inch of there scalps (and she has not), they haven’t missed more than the one day of school when I got the fatefull call. Before this school year it was 100% NO NIT policy. Tomorrow night we’re planning a Special Forces raid with olive oil and shower caps. Wish us luck. Even though I don’t have a significant amount of hair for the nits to cling to, I still have the heebee-geebees and scratch constantly myself.
SAND SUN/BOOK CORNER
Many of you know we went to Key Biscayne for Spring Break. It was a great trip. The warm weather really did do me a lot of good inside my head as well as out. We walked a lot on the beach. The kids (that would include Kyle) played endlessly in the swimming pool. The temps were so warm that I could slip into my daydream while reading DUNE and not have to imagine too hard. In my daydream, Kyle O’Dowd, not Kyle McGlauflin, takes the roll of Paul-Maud Dib, the hero who leads his Fremen desert people to gain control of their home world, of course. I play the part of the his mother, the Lady Jessica, the “Reverend Mother” who sees into the future and the past with a special precience but is powerless to control it. Lily plays Paul’s beloved, Chani, the desert waif who has a tremendous sense of justice. Lucy plays the roll of Alia, Paul’s toddler sister, who startles people with the astounding level of precociousness. You can imagine us there in the hot-white light, blurred figures on the beach, happy with voices that echo quietly in your mind. At least that’s what I did on my vacation. Needless to say, I also am enjoying the book a great deal, thanks Simon. I spent a lot of time lounging with it that week but have not quite finished it. The vacation was a great way to relax in the calm before the storm of birthdays we’ll have in the next couple weeks, thanks Kyle.
APRIL IS ALWAYS A BITCH
I know I shouldn’t be anxious about my children’s birthdays but this just happens to Kyle and I both at this time every year. We can’t help it. As a matter of fact, everything is under control, despite my anxiety. Last night I bought 34 goody bags online, 17 Harry Potter boxes each with round glasses, a lightning bolt tattoo and mini owl stuffed animals; and 17 puppy boxes, each with dog whistle, leash and mini puppy stuffed animals inside. All procured with the click of a button. Lily and pals will be shooting each other at Shadow Land Laser Tag while Lucy and her friends will be prevented from throwing gutter balls by way of gutter guards with the Navy Seals at the Naval Medical Bowling Center. Sounds fun, doesn’t it. OK, so we did take some easy ways out this go-round, using evites instead of my traditional photoshop collage invites, etc, but I think they will not feel this year’s birthday’s were tempered by the fact that their Mom has had cancer and has been exhausted mostly. All in all, the kids remain in great spirits and are VERY excited about their birthdays to come, as they should be.
Since I’m coming to the end of chemo and about to start radiation, I have a lot of Doc Appts these days, which are making things more hectic than normal. I have to get the last inflation of my right boob with the plastic surgeon so that I can go into radiation fully expanded. The other side has to stay put for a bit longer so they can point the laser beam at the correct oblique angle, allowing them to spread the beam across more skin than anything else. The skin is the target since theoretically that is where any cancer is most likely to linger post-op and post-chemo. I also have to see the radiation oncologist so they can “map” my right boob with pinpoint accuracy to where they want to aim it. I will get a dot tattoo that marks me for “alignment”. I also have to get an echo-cardiogram and EKG for use in the avastin drug study, lucky me. And last, I need to follow up on my plaguing sinus issues with the ENT, phew. Not to mention get 2 more chemo infusions besides. I’m tired just thinking about it. But this is IT, the home stretch. And for the record, technically, this is not a registered complaint (or kick in the pants), I’m just documenting my experience.
Another great thing on the calendar is happening today (now Wed). My forth landscape design will be installed in someone’s yard. This time we are planting a woodland garden with a line of sweetbay magnolias as a green screen between two agreeable neighbors in NW DC. I seem to be the Queen of woodland gardens. I’m obliterating grass like there’s no tomorrow. Yesterday, I presented my fifth landscape design, another woodland garden front yard to a lady a few streets away. My friend Dana and I collaborated on that project and the design was truly the better for it. Thanks, Dana! Don’t know when that one will go in. The client has to sign off on it, but she really liked it, so there’re some more lucky stars for me to admire.
MUSIC YOU CAN USE
Ok, here we are now at my favorite part of the update. In the last couple weeks we saw a couple of really superb concerts …
Jens Lekman – aother Swede who’s voice is unbelievable. He tells stories in his music that he pretends are real then he goes out and lives them after the fact. His songs are so funny and convincing. Here's a wonderful song called "Sipping Sweet Nectar", what I will be doing in a couple weeks.
The Dodos (opened for the next band). I had never heard of them before but am now a great fan. The lead singer looks like he’s 16 but sounds like he’s 35 and plays a hard strumming guitar that propels you into another place. This song is called "Fools".
Les Savvy Fav – the lead singer for this old fashioned punker band is insane. He climbed all over the audience and made sound effects between songs. He changed his clothes and disrobed often. I loved his spangled red jacket, so hip and ill-fitting. Here's a cool song called "Brace Yourself", advice I needed at the beginning of this ordeal.
MILESTONE THAT WASN'T
So I had planned to run, walk or crawl the Cherry Blossom 10 miler with my sister, Kyle and Tom, but in the end I bagged it. It was rainy and I was disappointed but too damn tired to do it. It would have been stupid to do it, I know that, but still I wish I could have. I dragged out the decision painfully while my sis patiently came over at 6:30 am to help me sort it out. We even got in the car and drove a block before I called it off. It was good that I decided to bag it because I went back to bed and slept nearly the whole day long. Meanwhile Kyle and Tom went down and ran a very fast paced race. I’m proud of them. So today, to my surprise, I received a picture of “myself” in the mail. It turned out that I did indeed run the race after all. Here I am. But which one is me?
But just you wait, I’ll be ready in June and October, come hell or high water. And Here’s some more good news, our October team is now the biggest team in DC, with 21 participants. Only half the team has begun raising money and we have already raised nearly $30K. It’s time to sign up for June so please join us everyone if you can.
GARDENER”S NOTEBOOK
When we visited Key Biscayne we went to a beautiful garden that happened to have Chihuly blown glass sculpture there. I finally got to see it. His glass goes so wonderfully well in the garden. See for yourself. Seeing this kind of beauty is tantamount to a religious experience for me. It’s really uplifting. I hope you like it too.
Subscribe to:
Posts (Atom)