I’m having such a bad day. I went in for my get-processed-for-radiation appointment and was immediately disconcerted because I know I was there a few weeks ago for a consult and yet nothing seemed familiar to me. I’d swear I’ve never been there before, but I know that I have.
They left me waiting for a whole hour which gets me really tense and annoyed because I feel like I have so little time, I don’t want it wasted. The process entails getting out of your clothes and into a hospital robe and then laying in a freezing cold room in an MRI machine until they get you positioned just right, I'm experienced, I wore socks. They molded something to my head for future sessions, drew all over me with pen and marker and finally tattooed 5 black dots on me which hurt like hell and I’ve had tattoos before. I was complimented on my ability to be a "statue" for so long, a skill I've acquired this past year. While I understand that everyone is just doing their jobs and they couldn’t have been nicer and this is all for my own good those tattoo’s make me feel violated. I’m fair skinned, they’re noticeable and they sent me out to change while I was still bleeding. Now I have these ugly marks on me, visible above the neckline, I don’t care how tiny, it just feels like one physical indignity too many.
I came home and showered and tried to wash the pen drawings off me as best I could and I went to the grocery store. On the way home I felt overcome, I wanted to lay in a fetal position and moan, wail, scream, I don’t know what. It was all I could do to get the groceries in and put away.
Then I got a snarky email from the guidance counselor at J’s school rejecting my very polite pleas to have Jonah’s math class changed, even though she had previously inferred it would happen. At first I wanted them to switch him over to the other team entirely, but I was willing to settle for just getting him out of the math class with the really unimpressive teacher who makes him nervous and into a class on the other team because then, he’ll have the same math homework as his local friends and they can help him and they can sometimes do homework together which helps me out while I’m in treatment because I only have so much energy.
This email implied that I have no good reason for asking and that these switches are never done which is absolute bullshit. All the public schools here say this and then I hear of person after person who got their kid switched. Rule, sure, but can we say discretion? They always act like you're asking for outrageous favors, but I like to think I’m their client... it’s a public school and we are the public. They are supposed to engage me and negotiate in good faith, am I being unreasonable? I feel like my little family has special circumstances right now and it would be nice for our school to accommodate us by switching one single class so that my kid would have friends to help him with homework when I’m too sick or too tired to.
I wrote back a pretty direct email but refrained from asking them to imagine the headline “public school refuses to help out cancer mom.” I’m not hopeful, we’re just homogenous cogs in a great, big, giant wheel in a great, big, giant machine and us little people don’t get to steer.
Thursday, August 30, 2012
Wednesday, August 29, 2012
Magic Dragon
I’m sitting on my porch, it’s a beautiful day, it’s 3:11 p.m. and middle school got out at 2:45. Little boy is walking home from school for the first time, it’s a long walk, I fear just a few blocks or more too long for those spindly little legs and a large, heavy backpack. I’m a nervous wreck waiting.
He’s walking home with the girl next door who is in eighth grade. They’ve known each other since she was two and he was born. The were thick as thieves for years and years. Bestie best friends with a touch of older sister in it for her. She knew him so well and is such a kind and sweet girl she put up with his volatility and was always patient when he had a, shall we say, moment. They used to play for ten hours straight, day after day, jabbering on a mile a minute, up to all kinds of crazy games, and mischief, almost speaking in their own language. I love this girl, she is the same age my daughter would have been and she occupies the same birth order in the family that I grew up as, middle child between older sister and younger brother, not the easiest spot. She’s always been special to me and their friendship was always beautiful and endlessly amusing to watch. Those two filled my house and my heart with happy sounds for years.
And then as she should, and anyone, including me would have predicted, she grew up when she hit middle school and they went their separate ways. She turned into a girl and a big kid and the little boy got left behind like Puff the Magic Dragon. But as she is the sweetest thing, a truly nice person, and still, I think, feels a little big sisterly, she offered to walk home with Jonah today because now they’re at the same school. I’m hoping they can get to know each other again as big kids, but that’s up to them. As for now, I’m just worrying... did they meet up at the front steps as planned? are the spindly legs holding up or cracked like twigs? Has the lack of eating lunch {because I’m sure he hasn't} caught up to him? I know he doesn’t know the way home by himself, is he lost?
Oh, oh, I hear them, they’re coming down the street yapping up a storm. All is well, they’re inside the house now eating creamsicles and talking about Dr. Who, J’s latest obsession and it turns out her’s as well. I can hear them talking a mile a minute, things change and some beautiful things stay the same. Welcome back Katie. She just told him she’s free to walk home with him tomorrow if he wants to, “sure” he says with a confident grin. I could cry, seriously, such a familiar sound those two and it's been a long time.
He’s walking home with the girl next door who is in eighth grade. They’ve known each other since she was two and he was born. The were thick as thieves for years and years. Bestie best friends with a touch of older sister in it for her. She knew him so well and is such a kind and sweet girl she put up with his volatility and was always patient when he had a, shall we say, moment. They used to play for ten hours straight, day after day, jabbering on a mile a minute, up to all kinds of crazy games, and mischief, almost speaking in their own language. I love this girl, she is the same age my daughter would have been and she occupies the same birth order in the family that I grew up as, middle child between older sister and younger brother, not the easiest spot. She’s always been special to me and their friendship was always beautiful and endlessly amusing to watch. Those two filled my house and my heart with happy sounds for years.
And then as she should, and anyone, including me would have predicted, she grew up when she hit middle school and they went their separate ways. She turned into a girl and a big kid and the little boy got left behind like Puff the Magic Dragon. But as she is the sweetest thing, a truly nice person, and still, I think, feels a little big sisterly, she offered to walk home with Jonah today because now they’re at the same school. I’m hoping they can get to know each other again as big kids, but that’s up to them. As for now, I’m just worrying... did they meet up at the front steps as planned? are the spindly legs holding up or cracked like twigs? Has the lack of eating lunch {because I’m sure he hasn't} caught up to him? I know he doesn’t know the way home by himself, is he lost?
Oh, oh, I hear them, they’re coming down the street yapping up a storm. All is well, they’re inside the house now eating creamsicles and talking about Dr. Who, J’s latest obsession and it turns out her’s as well. I can hear them talking a mile a minute, things change and some beautiful things stay the same. Welcome back Katie. She just told him she’s free to walk home with him tomorrow if he wants to, “sure” he says with a confident grin. I could cry, seriously, such a familiar sound those two and it's been a long time.
Tuesday, August 28, 2012
Double Blind
The past two nights I have slept, slept. I got in bed, turned out the lights and then it was morning, I’ve forgotten what this was like. I haven’t slept well in months, I’d stay up late for fear of going to bed and the hours tossing and turning and then one sleeping pill then another, only to sleep fitfully for one-hour increments. Then suddenly this morning I realized that I’d slept, that I don’t remember trying to sleep because it just happened, no sleeping pills, no angst, what a great, big, giant relief just to get an effortless nights sleep.
I’m hungry too, famished and that’s not so great. I’m still not at my ideal weight and those with my type of cancer fare better when there is no weight gain and they are at their optimal weight after treatment, so it’s not just a vanity thing, it’s imperative that I eat healthy and lose some more weight and certainly don’t gain any.
Which leads me to an interesting fact I just learned as I ponder joining a clinical trial. They have found that fewer type 2 diabetic women get certain cancers {including breast}, and fare much better after treatment, despite their weight and diet when they are on the diabetes drug Metformin. This drug has been around for ages and is inexpensive but seems to have anti-cancer properties, for reasons which I can’t intelligibly synopsize, I have more reading to do.
Apparently there’s quite a lot of evidence for this and it’s gotten to the double-blind study point which I could join. From reading on-line and looking at the Triple Negative Cancer chat boards, it seems a lot of people are taking the drug on their own by getting their primary care doctors to write the prescription which many will do for this off-label use, although I can’t imagine any of my copious doctors doing this. If I partake in the study there’s only a 50% chance I get the drug with the other option being in the placebo group. That’s a drawback, because if the drug works, I want the drug. On the positive side, if I get the placebo, I’m still doing something useful for future patients because somebody’s got to be in the study for it to become a legitimate treatment option. Here it is though, the big downside {because nothing it seems, is simple}... the drug has a pernicious side effect that’s very common. Some people’s bodies adjust in a month or two, some don’t and it’s, it’s... constant, sudden, painful diarrhea. Why, oh why? The other caveat is that you have to start within a year of diagnosis, so I’d have to enroll in November. I’d be willing to possibly suffer these symptoms {temporarily} for the greater good, but not in November, that’s too soon, that’s the holiday’s and last year I’d just started chemo, I felt like crap, I want to enjoy the holidays. I want to feel good for a while, I don’t want to be trapped inside my house, inside my bathroom, I’ve had just about enough of that.
So I’m really torn. I want to do it for so many reasons, including the fact that even if I get the placebo, which I’ll know due to lack of said nasty symptoms, I’ll get monitored more closely and that’s a good thing. Technically, no one, including your doctor knows if you’ve got the placebo or the real drug.
I have a few weeks to think about it and for now I’ll just dwell on the fact that my baby survived the first day of middle school, probably a lot better than I did. Watching my little person enter that massive building was surreal. He got into his locker no problem, erroneously wound up in the 7th grade lunch and sat in on the wrong class for a bit before realizing it, but was unfazed and in a fine if somewhat dazed mood when he got home. Phew.
I’m hungry too, famished and that’s not so great. I’m still not at my ideal weight and those with my type of cancer fare better when there is no weight gain and they are at their optimal weight after treatment, so it’s not just a vanity thing, it’s imperative that I eat healthy and lose some more weight and certainly don’t gain any.
Which leads me to an interesting fact I just learned as I ponder joining a clinical trial. They have found that fewer type 2 diabetic women get certain cancers {including breast}, and fare much better after treatment, despite their weight and diet when they are on the diabetes drug Metformin. This drug has been around for ages and is inexpensive but seems to have anti-cancer properties, for reasons which I can’t intelligibly synopsize, I have more reading to do.
Apparently there’s quite a lot of evidence for this and it’s gotten to the double-blind study point which I could join. From reading on-line and looking at the Triple Negative Cancer chat boards, it seems a lot of people are taking the drug on their own by getting their primary care doctors to write the prescription which many will do for this off-label use, although I can’t imagine any of my copious doctors doing this. If I partake in the study there’s only a 50% chance I get the drug with the other option being in the placebo group. That’s a drawback, because if the drug works, I want the drug. On the positive side, if I get the placebo, I’m still doing something useful for future patients because somebody’s got to be in the study for it to become a legitimate treatment option. Here it is though, the big downside {because nothing it seems, is simple}... the drug has a pernicious side effect that’s very common. Some people’s bodies adjust in a month or two, some don’t and it’s, it’s... constant, sudden, painful diarrhea. Why, oh why? The other caveat is that you have to start within a year of diagnosis, so I’d have to enroll in November. I’d be willing to possibly suffer these symptoms {temporarily} for the greater good, but not in November, that’s too soon, that’s the holiday’s and last year I’d just started chemo, I felt like crap, I want to enjoy the holidays. I want to feel good for a while, I don’t want to be trapped inside my house, inside my bathroom, I’ve had just about enough of that.
So I’m really torn. I want to do it for so many reasons, including the fact that even if I get the placebo, which I’ll know due to lack of said nasty symptoms, I’ll get monitored more closely and that’s a good thing. Technically, no one, including your doctor knows if you’ve got the placebo or the real drug.
I have a few weeks to think about it and for now I’ll just dwell on the fact that my baby survived the first day of middle school, probably a lot better than I did. Watching my little person enter that massive building was surreal. He got into his locker no problem, erroneously wound up in the 7th grade lunch and sat in on the wrong class for a bit before realizing it, but was unfazed and in a fine if somewhat dazed mood when he got home. Phew.
Sunday, August 26, 2012
Twenty
I feel like I haven’t been to the doctor’s {and by doctor’s, I mean medical place because I rarely see my actual doctor} in weeks. I feel free, untethered, it’s amazing and in actuality, it’s been five days. Glorious. So quickly we adapt to one routine or another and this routine of no routine if preferrable. Visiting the 4th floor of the hospital, the cancer floor, where people go to die, every saturday was always jarring and depressing and I would find myself ruminating on the glimpses of the people I saw there, for days, if not forever. I’d imagine myself in one of those rooms and that’s a place I really don’t want to be.
My son turns 17 today of which I’m in awe and disbelief and grateful for how much I just plain like him. He celebrated yesterday with friends and pizza and chocolate cake. He doesn’t like a fuss or singing of happy birthday but I made him blow out candles privately, because you have to have a wish on your birthday.
Because I trust him, after cake, J and I left the noisy teenagers and went to a yard party of our own, where amazingly, we lasted until midnight having a perfect good time. I drank, yes I did, not a lot, but a bit and champagne tasted lovely, and I laughed and I watched J running around in the dark with his little pack of conspirators being silly and free and I was happy. I asked J today, on a scale of one to 10 how good a time did you have and he said “20”. Yes, 20 for us both. This week, school starts and I have three appointments, oncologist, radiologist and dentist. In between, I hope for some normalcy. I’m hoping for a few weeks before I start the grind of radiation. The clock is ticking too on my business, it’s now or never, I need to begin the resurrection over there or I’m in trouble. I’m optimistic though, that it can be done.
My son turns 17 today of which I’m in awe and disbelief and grateful for how much I just plain like him. He celebrated yesterday with friends and pizza and chocolate cake. He doesn’t like a fuss or singing of happy birthday but I made him blow out candles privately, because you have to have a wish on your birthday.
Because I trust him, after cake, J and I left the noisy teenagers and went to a yard party of our own, where amazingly, we lasted until midnight having a perfect good time. I drank, yes I did, not a lot, but a bit and champagne tasted lovely, and I laughed and I watched J running around in the dark with his little pack of conspirators being silly and free and I was happy. I asked J today, on a scale of one to 10 how good a time did you have and he said “20”. Yes, 20 for us both. This week, school starts and I have three appointments, oncologist, radiologist and dentist. In between, I hope for some normalcy. I’m hoping for a few weeks before I start the grind of radiation. The clock is ticking too on my business, it’s now or never, I need to begin the resurrection over there or I’m in trouble. I’m optimistic though, that it can be done.
Friday, August 24, 2012
Two Bishops
I’m obsessively checking my head for new hair. Checking, rechecking, checking again, all within a 10 minute span. I’ve been fine without hair, but all of a sudden I’m done with it, done. I know it will be years before it even hits my shoulders but I miss that feeling of brushing my hair and then pulling my fingers through it to gather into a ponytail. I’m having hair envy and I’m getting anxious for new growth, so naturally, I’m worrying that it won’t grow back. I went on-line and found a few outlyers chatting about how their hair came in so thinly, or configured like male pattern baldness that they’re still buzzing their heads a year later. Damn you outlyers, damn you internets making me crazy{er}.
Except that my baldness led me to a wonderful chance meeting yesterday. After a long day at middle school orientation, exhausting, but went great, J and I stopped into our local café for a cold beverage. While waiting on line, the woman behind me told me that she too had been bald once. We kept talking all the way to the island where you get your lids and straws and there was just something really special about her. She exuded calm and warmth, true sincerity and kindness, I was really drawn to her, she was the kind of person you remember despite such a minor encounter. I finally asked her name and she said Gerilyn Wolf and I yelped “you’re the bishop.” And indeed she was. The open-minded, progressive, lived among the homeless, Episcopal Bishop of Rhode Island. I just love that you never know who you’ll meet and when... usually when you least expect, I think. Plus, as we'd just come from Nathan Bishop School, that made for two bishops in one day.
Except that my baldness led me to a wonderful chance meeting yesterday. After a long day at middle school orientation, exhausting, but went great, J and I stopped into our local café for a cold beverage. While waiting on line, the woman behind me told me that she too had been bald once. We kept talking all the way to the island where you get your lids and straws and there was just something really special about her. She exuded calm and warmth, true sincerity and kindness, I was really drawn to her, she was the kind of person you remember despite such a minor encounter. I finally asked her name and she said Gerilyn Wolf and I yelped “you’re the bishop.” And indeed she was. The open-minded, progressive, lived among the homeless, Episcopal Bishop of Rhode Island. I just love that you never know who you’ll meet and when... usually when you least expect, I think. Plus, as we'd just come from Nathan Bishop School, that made for two bishops in one day.
Wednesday, August 22, 2012
Hypochondria
Small one informed me tonight that plain paper wrappers on ice cream pops drive him crazy, he can’t stand them, they give him a “traumatic experience”. “A dramatic traumatic experience apparently” I said. “Good one” he nodded calmly before resuming his dramatic rendition of paper wrapper induced trauma. The tall one is mortally terrified of styrofoam. Wherever do I get such neurotic kids, oh my god an inchworm, ruuuuuuuuuun!
Yeah, it’s from me.
I’ve never been a hypochondriac though and I have known a few, so I know what they look like. What I mean is never been, up until now, because now, I feel a serious case brewing. I just started taking Claritin every day so that I can attribute my nagging cough to allergies and not lung cancer. Every ache is going to be bone cancer, every headache brain cancer. I’ll probably be discovering new cancers, fingernail cancer, belly-button cancer, I could win a Nobel Prize for one of these discoveries, that would be exciting.
The other day in the mirror I noticed a ridge on the side of my head which I didn’t recall, how could I have missed such an obvious cranial atribute? I figured maybe my undiagnosed brain tumor was getting so big it was changing the shape of my skull. I worried about it periodically for a few days and then tonight as I was leaving the bathroom I saw an even bigger ridge on the side of my head in the mirror, and a weird shape on top of my head and violá, I’m cured, it's a miracle, they were all from leaving my glasses perched on top of my head.
What do you do for hypochondria? Go to the doctor? They sent me away when I actually had cancer so what good are they to me now? I don’t know if there’s enough therapy or guided meditation in the world, certainly not in my world, oh, it’s not going to be pretty.
Yeah, it’s from me.
I’ve never been a hypochondriac though and I have known a few, so I know what they look like. What I mean is never been, up until now, because now, I feel a serious case brewing. I just started taking Claritin every day so that I can attribute my nagging cough to allergies and not lung cancer. Every ache is going to be bone cancer, every headache brain cancer. I’ll probably be discovering new cancers, fingernail cancer, belly-button cancer, I could win a Nobel Prize for one of these discoveries, that would be exciting.
The other day in the mirror I noticed a ridge on the side of my head which I didn’t recall, how could I have missed such an obvious cranial atribute? I figured maybe my undiagnosed brain tumor was getting so big it was changing the shape of my skull. I worried about it periodically for a few days and then tonight as I was leaving the bathroom I saw an even bigger ridge on the side of my head in the mirror, and a weird shape on top of my head and violá, I’m cured, it's a miracle, they were all from leaving my glasses perched on top of my head.
What do you do for hypochondria? Go to the doctor? They sent me away when I actually had cancer so what good are they to me now? I don’t know if there’s enough therapy or guided meditation in the world, certainly not in my world, oh, it’s not going to be pretty.
Tuesday, August 21, 2012
Ornery!
Oh my god, I want to scream! Media, what is wrong with you? This neanderthal Todd Akin is saying he just mispoke a single word and everyone is picking on him. I assume that to be the word “legitimate,” “legitimate rape” and every single commentator leaves it at that. What about the other words, the possibly even more ignorant and ridiculous words about women having a way to shut those things down. Follow up questions people, follow up!
While I’m on a rant may I just say, Diana Nyad, you’re awesome, you’re super awesome, you’re amazing, but move the heck on and quit trying to swim to cuba or whatever you’re doing. Where does Diana get her enterouge of 200? Could their energy and resources not be better spent somewhere other than constantly attempting this pointless feat so that this swimmer can splash around in self-aggrandizement?
See? I’m feeling better, I’m off the couch thanks to the blood of others, literally. If you’ve ever given blood you are a lifesaver and I mean that literally too. I am thinking about all blood donors today in addition to Todd Akin and Diana Nyad and the corrupt democratic machine in Providence and the School Deptartment which now has my son’s 6th grade class so over enrolled there are currently 29 kids assigned to each class and will have others obstensibly just wandering the halls with nowhere to go. And I saw a KIA and I’m flummoxed again.
Thank you blood donor, I promise to be less ornery tomorrow.
While I’m on a rant may I just say, Diana Nyad, you’re awesome, you’re super awesome, you’re amazing, but move the heck on and quit trying to swim to cuba or whatever you’re doing. Where does Diana get her enterouge of 200? Could their energy and resources not be better spent somewhere other than constantly attempting this pointless feat so that this swimmer can splash around in self-aggrandizement?
See? I’m feeling better, I’m off the couch thanks to the blood of others, literally. If you’ve ever given blood you are a lifesaver and I mean that literally too. I am thinking about all blood donors today in addition to Todd Akin and Diana Nyad and the corrupt democratic machine in Providence and the School Deptartment which now has my son’s 6th grade class so over enrolled there are currently 29 kids assigned to each class and will have others obstensibly just wandering the halls with nowhere to go. And I saw a KIA and I’m flummoxed again.
Thank you blood donor, I promise to be less ornery tomorrow.
Monday, August 20, 2012
Another Flunk
I flunked my blood test today, so no surgery, no port removal, but I did sidle up to the bar for two bags of B+. Transfusions are the worst because they take forever. First they have to do the initial blood work to check your levels, then when a transfusion is required they send more blood to be typed and crossmatched which I'm not sure why they have to do every single time {but I agree, better safe than sorry}, then it takes at least an hour to get the blood, so all in all, seven hours tethered to a chair. As I was expecting surgery today, I didn't bring all my stuff, my shameless suite of Apple products, no iPad, the horror, no snacks and no breakfast, again, as I didn't eat past midnight hoping I would make it into surgery.
Transfusions are also the best because they make you feel better. The first 24 hours or so, I feel like my body struggles a little bit to adjust and then, zowie, I can breathe again, I can move, I can literally feel that there is more oxygen traveling from head to toe. Since this, my hopefully last transfusion, #6, wasn't accompanied by chemo, I'm hoping for a vast improvement in how I've been feeling.
I was back on the internet yesterday since I couldn't get up, and now I realize I have to test drive a Honda as well as a Toyota. It's going to be a tough call, the Yota is way more aesthetically appealing from the outside, but I learned that the dashboard lights up in "amber" which I don't agree with at all. I'd much prefer, first, blue and then red, amber doesn't really cut it. Additionally, I like the placement and type of gear shifter in the Honda, but the rest of the attributes are split 50/50 between each and prices are similar. Figure I'll drive both and then see what turns up with the best price. Then there is the dilemma between buying new and stripped down, or used with silly, but very fun amenities. I'd love a built in GPS and I'm completely infatuated with side view mirrors that defrost as well as remote starting capabilities so I could warm up the car and defrost the windows without going outside. So there it is, the answer to the weeks old question of what would I do if I only had a few years to live... I'd defrost my windshield without going outside.
As eager as I am to get the port out, I didn't make an appointment until after labor day, a few weeks from now. The next two weeks hold middle school orientation, first days of school, shopping for school supplies, finishing up summer reading projects and myriad doctor's appointments. Adding a surgery, despite how minor to the mix, just seemed too much.
Transfusions are also the best because they make you feel better. The first 24 hours or so, I feel like my body struggles a little bit to adjust and then, zowie, I can breathe again, I can move, I can literally feel that there is more oxygen traveling from head to toe. Since this, my hopefully last transfusion, #6, wasn't accompanied by chemo, I'm hoping for a vast improvement in how I've been feeling.
I was back on the internet yesterday since I couldn't get up, and now I realize I have to test drive a Honda as well as a Toyota. It's going to be a tough call, the Yota is way more aesthetically appealing from the outside, but I learned that the dashboard lights up in "amber" which I don't agree with at all. I'd much prefer, first, blue and then red, amber doesn't really cut it. Additionally, I like the placement and type of gear shifter in the Honda, but the rest of the attributes are split 50/50 between each and prices are similar. Figure I'll drive both and then see what turns up with the best price. Then there is the dilemma between buying new and stripped down, or used with silly, but very fun amenities. I'd love a built in GPS and I'm completely infatuated with side view mirrors that defrost as well as remote starting capabilities so I could warm up the car and defrost the windows without going outside. So there it is, the answer to the weeks old question of what would I do if I only had a few years to live... I'd defrost my windshield without going outside.
As eager as I am to get the port out, I didn't make an appointment until after labor day, a few weeks from now. The next two weeks hold middle school orientation, first days of school, shopping for school supplies, finishing up summer reading projects and myriad doctor's appointments. Adding a surgery, despite how minor to the mix, just seemed too much.
Saturday, August 18, 2012
Bah Humbug!
I went into this weekend as usual, with plans and optimism, thinking I didn’t feel too badly thoughout the week, so the weekend was going to be amazing -- productive, funtional, fun. And pretty quickly, as usual, I vaguely recall, because I don’t seem to remember this phenomena from week to week, I’m flat on my back. Weak, nauseaus, upset stomach and crazy dizzy when I stand up. I almost turned around on the way back from getting my shot at the hospital to return, but I just couldn’t bear the E.R., not fond of my disappointment and fear, but I’m stuck with at least those.
I feel just horrible, I guess this chemo really hits me a few day later and not immediately, like the first regimen did, and with my chemo brain, I can’t seem to keep track of that week to week. It’s 5p.m. and I’m finally out of bed and cooking pasta, but I have to keep sitting down as the room spins. My brain feels like it might as well be living in a jar on a shelf, because I just can’t seem to get anywhere.
Only fun thing today is hearing the serious newscasters say "pussy riot".
I feel just horrible, I guess this chemo really hits me a few day later and not immediately, like the first regimen did, and with my chemo brain, I can’t seem to keep track of that week to week. It’s 5p.m. and I’m finally out of bed and cooking pasta, but I have to keep sitting down as the room spins. My brain feels like it might as well be living in a jar on a shelf, because I just can’t seem to get anywhere.
Only fun thing today is hearing the serious newscasters say "pussy riot".
Friday, August 17, 2012
Shiny, Pretty
I’m dreaming of Toyotas, shiny, pretty Toyota RAV4s. After weeks of pouring over auto websites and viewing and reviewing the specs and the galleries, the darkhorse Toyota, originally not considered due to preconceived fear of price, dashed up and stole my heart. I don’t know what the specs and ameneties are, I don’t know the gas mileage, I just know I like the dashboard design, it has round air vents, I like round and I like it’s shape. I think it’s the smartest looking of the vehicles I've been pondering so I’ve decided not to obsess, not to spend weeks test driving five different brand cars, I’m just gonna go hunt me down a sweet little Toyota. I loved the Corolla I had years ago, so that’s that. Somewhere out there is a fabulous deal on a RAV4, I just know it.
I had the worst insomnia last night, it’s just getting worse and worse. Popped two Vicodin’s and still couldn’t sleep for more than 45 minutes at a time. Maybe it was the chemical cake bomb I ate, maybe there was a chemical conflict when it encountered all the chemicals already swimming around inside me. When I’m finally done with my five days per week at the clinic, I can spend some time having acupuncture and easing into exercise and hopefully that will help. Of course, before I know it, I’ll be at radiation five days a week, cancer is time consuming.
Now that I’m done with chemo, I’m anxious for hair sprouts. I wonder what it will be like to just blend in, look like everyone else. I wonder if it will be easier or harder when I look normal on the outside, but don’t feel normal on the inside. Maybe surreal is just going to be my new normal, in so many respects.
I had the worst insomnia last night, it’s just getting worse and worse. Popped two Vicodin’s and still couldn’t sleep for more than 45 minutes at a time. Maybe it was the chemical cake bomb I ate, maybe there was a chemical conflict when it encountered all the chemicals already swimming around inside me. When I’m finally done with my five days per week at the clinic, I can spend some time having acupuncture and easing into exercise and hopefully that will help. Of course, before I know it, I’ll be at radiation five days a week, cancer is time consuming.
Now that I’m done with chemo, I’m anxious for hair sprouts. I wonder what it will be like to just blend in, look like everyone else. I wonder if it will be easier or harder when I look normal on the outside, but don’t feel normal on the inside. Maybe surreal is just going to be my new normal, in so many respects.
Thursday, August 16, 2012
Cancer Cake & Pez Dispensers
I think Cumulative is the word of the week. I've been feeling really tired and druggy all week and sleeping poorly, getting confused, so that despite having had my last chemo, I don't feel celebratory. I've been doing chemo for so long now and still popping into the clinic every day for my shots that it just doesn't feel real yet. It will feel real when I'm feeling a little better, but for now, I'm just going through a normal chemo dose aftermath, complete with chipping a tooth on gum... gum!
I was trudging through the grocery store tonight at my snail's pace and I ran into someone I know peripherally and they said "you look like you're going to fall over" and I blurted out "status quo baby, that's the way I rolls." They wished me good luck and went on their way, but yay for me, I amused myself if no one else, I don't know where that response came from.
The tall one typed my grocery list into my phone for me and after he brought in the groceries and I put them away we settled into a taped Daily Show episode followed by a little Shark Week and I am so acutely aware of what a sanctuary my little family is, so grateful for my home, my cozy, safe haven. We may not be perfect, but we're always nice to each other, there's never any yelling, or ignoring, we're always chatting it up or just quietly enjoying each other's company. Even now as I'm typing, he'll rewind the good scenes and tell me when to look up to see a big shark jumping out of the water. Little one is sitting at the computer behind me playing his beloved MineCraft and on-line chatting with his friends doing the same and giggling to himself non-stop, but he joins in the conversation when he feels like it.
While I was at the store I had a craving for frozen cake, I've had this before but don't follow through. Tonight I gave in and bought a Pepperidge Farm Frozen Cake {with "decorative frosting"... as opposed to the non-decorative, utilitarian frosting?}, in other words, Cancer Cake, containing 0% real food, the kind of food I've sworn off. It was disgusting, so sweet, cardboard texture, I can't get the sickly, artificial taste out of my mouth, and it gave my such a headache. I'm glad I bought it though, because I'll never be tempted by that odd craving again, yuck. I also treated us to a Kermit the Frog Pez Dispenser, I can't resist a quality new Pez Dispenser, and while J is the Pezaholic, G and I loved Sesame Street, so Kermit rightfully joins our collection.
The boys are with their father this weekend and no kidnapping them back for me. I'm going to have a me, me, me weekend. Lot's of naps, porch time, a little studio time and I have a few choices of just plain enjoyable things I'd like to do, it remains to be seen whether I do any of them, but I need the wide open time. No sooner did I get back from last chemo than little boy spiked a fever and turns out to have the Coxsackie virus. Not dangerous, but sore throat and sores in his mouth, it's more serious if you're younger. He was so cute, "oh no, I can't have your delicious smoothies because the doctor said not to have any citrus and you put orange juice in." No worries, I can use apple.
I was trudging through the grocery store tonight at my snail's pace and I ran into someone I know peripherally and they said "you look like you're going to fall over" and I blurted out "status quo baby, that's the way I rolls." They wished me good luck and went on their way, but yay for me, I amused myself if no one else, I don't know where that response came from.
The tall one typed my grocery list into my phone for me and after he brought in the groceries and I put them away we settled into a taped Daily Show episode followed by a little Shark Week and I am so acutely aware of what a sanctuary my little family is, so grateful for my home, my cozy, safe haven. We may not be perfect, but we're always nice to each other, there's never any yelling, or ignoring, we're always chatting it up or just quietly enjoying each other's company. Even now as I'm typing, he'll rewind the good scenes and tell me when to look up to see a big shark jumping out of the water. Little one is sitting at the computer behind me playing his beloved MineCraft and on-line chatting with his friends doing the same and giggling to himself non-stop, but he joins in the conversation when he feels like it.
While I was at the store I had a craving for frozen cake, I've had this before but don't follow through. Tonight I gave in and bought a Pepperidge Farm Frozen Cake {with "decorative frosting"... as opposed to the non-decorative, utilitarian frosting?}, in other words, Cancer Cake, containing 0% real food, the kind of food I've sworn off. It was disgusting, so sweet, cardboard texture, I can't get the sickly, artificial taste out of my mouth, and it gave my such a headache. I'm glad I bought it though, because I'll never be tempted by that odd craving again, yuck. I also treated us to a Kermit the Frog Pez Dispenser, I can't resist a quality new Pez Dispenser, and while J is the Pezaholic, G and I loved Sesame Street, so Kermit rightfully joins our collection.
The boys are with their father this weekend and no kidnapping them back for me. I'm going to have a me, me, me weekend. Lot's of naps, porch time, a little studio time and I have a few choices of just plain enjoyable things I'd like to do, it remains to be seen whether I do any of them, but I need the wide open time. No sooner did I get back from last chemo than little boy spiked a fever and turns out to have the Coxsackie virus. Not dangerous, but sore throat and sores in his mouth, it's more serious if you're younger. He was so cute, "oh no, I can't have your delicious smoothies because the doctor said not to have any citrus and you put orange juice in." No worries, I can use apple.
Tuesday, August 14, 2012
F is for flunked
I flunked my CBC today and I'm not surprised because I've been feeling completely played out. I found a pile of jeans that didn't fit any more in my dresser and I decided to try some on and the mere act of pulling up and buttoning two pairs of pants left my arms aching and my lungs gasping for breathe, now that's just pathetic. Good news is that one pair fit and one was too big.
Because it was my last chemo, they let me do it even though my white blood cells are really low and would have normally disqualified me. I do, however, require at least another week of daily shots which I thought I was done with, and it may delay my surgery next week.
I had been hoping to be done well before school starts, so we could have some fun field trips, but it looks like it isn't going to go down that way.
Right now I can't focus on any of that, I'm consumed with little boy's 6th grade schedule and how we did not exactly win the teacher choice lottery. I'm hoping to drag my bad, bald self in there later in the week and beg, plead and cry at them. I've not wanted, or expected anyone's sympathy or special treatment, but I'm not holding back with this, I want what I want despite fierce school policy regarding swapping teachers. I'm normally a very low maintenance parent, but I'm not willing to just roll the dice here although ultimately, I may not have a choice. It really makes me wonder when I'm going to catch a break. I do, however, believe I was issued a "cancer card" upon diagnosis and I've refrained from using it until now, but I'm playing that baby and it may not be pretty.
Because it was my last chemo, they let me do it even though my white blood cells are really low and would have normally disqualified me. I do, however, require at least another week of daily shots which I thought I was done with, and it may delay my surgery next week.
I had been hoping to be done well before school starts, so we could have some fun field trips, but it looks like it isn't going to go down that way.
Right now I can't focus on any of that, I'm consumed with little boy's 6th grade schedule and how we did not exactly win the teacher choice lottery. I'm hoping to drag my bad, bald self in there later in the week and beg, plead and cry at them. I've not wanted, or expected anyone's sympathy or special treatment, but I'm not holding back with this, I want what I want despite fierce school policy regarding swapping teachers. I'm normally a very low maintenance parent, but I'm not willing to just roll the dice here although ultimately, I may not have a choice. It really makes me wonder when I'm going to catch a break. I do, however, believe I was issued a "cancer card" upon diagnosis and I've refrained from using it until now, but I'm playing that baby and it may not be pretty.
Sunday, August 12, 2012
Bad Alliteration
Romney is sickening and ridiculous, but Romney and Ryan is dangerous. Please let us be smarter than when we went to the polls and elected W, I’m scared and so damned sick of tall, white men wanting to tell everyone else what to do, and ultimately only serving themselves. And that is the perfect segue into local politics where I’d like to tell any local friends that I’m really excited to be avidly supporting Maryellen Butke for State Senate in District 3. You know me, I’ve done my research, and I am really impressed with Maryellen -- her years and years of work in public education reform, her commitment to getting gay marriage passed in Rhode Island and the knowledgeable {she has all the degrees you could possibly want} and human way she embodies a truly progressive point of view.
I’m thinking of having one of those meet and greet gatherings at my house for her, something I’ve never done or even attended, but it’s got to be soon, the primary is on Sept. 11. I’ve already said I would do it but I’m looking at my schedule of last chemo and surgery and I know I’m biting off more than I can chew, at the same time, it seems a really important thing to do as I think she’s going into this as a bit of an underdog, since Rhoda Perry hand-picked her replacement and she’s got all the powers that be behind her. So very sick and tired of not doing the things I want to do, I think I’m going to really suck it up and do this or I’ll hate myself.
I was at the grocery store yesterday and a woman came flying towards me with the biggest breasts, just wobbling out of her shirt and I thought to myself “nice ones” and that shocked even me. That is just not something I’m used to thinking, nice ones? Oh my god, and they were huge, i’ve never wanted huge breasts and still don’t, are they putting testosterone in my chemo drip? They really were more scary than nice, but there is my brain saying “nice ones”. This obsession with breasts isn’t maudlin, it’s just constant and weird and takes me by surprise over and over again. So if we’re having coffee together, yeah, I’m looking at your boobs, please don’t be uncomfortable, but do slap me if I try to touch them.
I’m thinking of having one of those meet and greet gatherings at my house for her, something I’ve never done or even attended, but it’s got to be soon, the primary is on Sept. 11. I’ve already said I would do it but I’m looking at my schedule of last chemo and surgery and I know I’m biting off more than I can chew, at the same time, it seems a really important thing to do as I think she’s going into this as a bit of an underdog, since Rhoda Perry hand-picked her replacement and she’s got all the powers that be behind her. So very sick and tired of not doing the things I want to do, I think I’m going to really suck it up and do this or I’ll hate myself.
I was at the grocery store yesterday and a woman came flying towards me with the biggest breasts, just wobbling out of her shirt and I thought to myself “nice ones” and that shocked even me. That is just not something I’m used to thinking, nice ones? Oh my god, and they were huge, i’ve never wanted huge breasts and still don’t, are they putting testosterone in my chemo drip? They really were more scary than nice, but there is my brain saying “nice ones”. This obsession with breasts isn’t maudlin, it’s just constant and weird and takes me by surprise over and over again. So if we’re having coffee together, yeah, I’m looking at your boobs, please don’t be uncomfortable, but do slap me if I try to touch them.
Friday, August 10, 2012
Premature
Awwww, last day of camp for little boy who couldn't tear himself away. Hugs, and more hugs, high fives, but mostly hugs, the kind where you smoosh your face into the other person. Everyone who darkens our doorstep is invited to his film festival which while fabulous is a bit long, patience has been well forthcoming. I don't think he's ever had such total, relentless, non-stop fun in his whole life, it's a beautiful thing when you find your tribe.
My thoughts today are with David Rakoff {mentioned in a previous post} who died last night at 47 years old when the cancer he'd been keeping at bay decided to get him. Writer, performer, very human being. Sad. Pointless. Premature. Unfair how much he went through. R.I.P. David Rakoff.
My thoughts today are with David Rakoff {mentioned in a previous post} who died last night at 47 years old when the cancer he'd been keeping at bay decided to get him. Writer, performer, very human being. Sad. Pointless. Premature. Unfair how much he went through. R.I.P. David Rakoff.
Thursday, August 9, 2012
Garbage Disposal
When I heard through the grapevine than my acquaintance, and son’s former 7th grade english teacher had breast cancer I felt disproportionately upset {redundant, I know, I’ve told this story}. I felt some inexplicable connection to this person I didn’t know well and I was utterly compelled to barge right into her life and be her friend and support her anyway I could, whether I was actually of any help, of course, could be debated. These things have no rhyme or reason and in this case I wound up with the better part of the deal because she’s been an amazing source of support for me as I now go through this appalling odyssey. Friends for life, I have no doubt.
Last week, my favorite of all household luxuries, the garbage disposal broke. Yes, I know they’re bad for the environment, I don’t care, I must have a garbage disposal, I could sooner live without a dishwasher, air conditioner, anything, so I called my plumber. He’s been my plumber for a decade {but how often do you see your plumber?} and a cantankerous old character, yes, anyone older than me gets called old, he’s not that old. Well, don’t judge a book by it’s cover. He’s a hunter and a fisherman and makes his own sausage, his own wine and it turns out, is a gourmet cook who likes to wear a chef's hat, who would have guessed? A man’s man who doesn’t like small children, he’d “drown them all” if he had the chance and now I learn he was a nurse, a medic in Vietnam. I don’t think you could find two people more seemingly different than {blank} the plumber and I. I’ve always called him {insert real name here} the plumber, but I’m leaving his name out as I leave everyone’s name out, so I’m referring to him here as blank-the-plumber. I have to admit, I’ve always had a soft spot for him and his cranky humor and we always joke around when he’s fixing my cranky old house pipes. And yeah, the guy who painted my house 10 years ago is now counted among my closest dearest friends. What can I say, I’m chatty and I think we outsider, self-employed folk are attracted to one another no matter how different we are.
The etiquette of cancer is tricky. I don’t like to shock people, but what do you say to someone you’re going to see who doesn’t know? When he called to say he was coming over to fix my disposal I blurted out -- don’t be shocked when you see me, I’ve been a little sick, I look a little different. He was confused so I said “o.k., I have cancer and I’m bald, but it’s fine, don’t worry about it, I just didn’t want you to be shocked when you saw me.”
Blank-the-plumber had the same response to me as I did to G's teacher, he was really, really affected. There is the deepest humanity and kindness where you least expect it. Blank is an oldest sibling with five younger sisters and he says now I’m sister #6. He called me the next day and said he talked to his wife about me and they’re all in, they really want to be there for me. Since then he’s dropped off vegetables from his garden twice and showed up yesterday with a shaved head. “when you grow hair, I’ll grow hair, it’s no big deal.” I’ve seen pictures of his cabin, his pets, his life and I can now tell you that Blank-the-plumber is my friend for life and I’m completely uplifted by the sweet amazing soul he covers up with all that faux crankiness.
The biggest of hearts lurk in the most unexpected places {as do the smallest}.
When something life changing like an illness or a loss hits your life, it’s guaranteed that your relationships will reorganize themselves, I’ve been there before and it’s not just me, anyone will tell you this who’s been there. The person you look to for support may be the first to flee, while your rock, your indispensible person might be who you least expected. I’ve been lucky this time around, I have gained so many amazing people and relationships on this trek. Encountered so much kindness and generosity, sincerity and strength. From the folks on my street I barely knew to the long ago friends who’ve popped up after 25 years. And next week, I’m having lunch with my plumber who is now my friend.
My only quandary is how to deal with the friends who’ve vanished. The folks I thought would be there and called once or twice early on and were gone, the “call me when you’re feeling better and we’ll have dinner.” Maybe I’ll never hear from them again which might be preferable. I don’t know how to answer, “how’s it going? what are you up to?” from someone who’s been incommunicado through all of this helter skelter madness, where would you begin? It’s not a matter of being mad, or holding grudges, that’s not me, it’s just really truly, where do you begin? I can’t imagine what I would say, how would I not feel alienated, estranged? I’m not the same person, you just can’t go through something this big and all encompassing and be the same person on the other end {of which there really isn’t one} and if someone hasn’t been vaguely tuned in to either real me or blog me, I just feel like they wouldn’t know me anymore. That’s why I’m so grateful to this blog and to everyone who reads it, skims it, stays tuned in even a little, because I will be able to see you a week or a year from now and not feel like an alien, not feel self-conscious, because you’ve stuck with me, you know where I’ve been and I am forever grateful to you for keeping me tethered.
Last week, my favorite of all household luxuries, the garbage disposal broke. Yes, I know they’re bad for the environment, I don’t care, I must have a garbage disposal, I could sooner live without a dishwasher, air conditioner, anything, so I called my plumber. He’s been my plumber for a decade {but how often do you see your plumber?} and a cantankerous old character, yes, anyone older than me gets called old, he’s not that old. Well, don’t judge a book by it’s cover. He’s a hunter and a fisherman and makes his own sausage, his own wine and it turns out, is a gourmet cook who likes to wear a chef's hat, who would have guessed? A man’s man who doesn’t like small children, he’d “drown them all” if he had the chance and now I learn he was a nurse, a medic in Vietnam. I don’t think you could find two people more seemingly different than {blank} the plumber and I. I’ve always called him {insert real name here} the plumber, but I’m leaving his name out as I leave everyone’s name out, so I’m referring to him here as blank-the-plumber. I have to admit, I’ve always had a soft spot for him and his cranky humor and we always joke around when he’s fixing my cranky old house pipes. And yeah, the guy who painted my house 10 years ago is now counted among my closest dearest friends. What can I say, I’m chatty and I think we outsider, self-employed folk are attracted to one another no matter how different we are.
The etiquette of cancer is tricky. I don’t like to shock people, but what do you say to someone you’re going to see who doesn’t know? When he called to say he was coming over to fix my disposal I blurted out -- don’t be shocked when you see me, I’ve been a little sick, I look a little different. He was confused so I said “o.k., I have cancer and I’m bald, but it’s fine, don’t worry about it, I just didn’t want you to be shocked when you saw me.”
Blank-the-plumber had the same response to me as I did to G's teacher, he was really, really affected. There is the deepest humanity and kindness where you least expect it. Blank is an oldest sibling with five younger sisters and he says now I’m sister #6. He called me the next day and said he talked to his wife about me and they’re all in, they really want to be there for me. Since then he’s dropped off vegetables from his garden twice and showed up yesterday with a shaved head. “when you grow hair, I’ll grow hair, it’s no big deal.” I’ve seen pictures of his cabin, his pets, his life and I can now tell you that Blank-the-plumber is my friend for life and I’m completely uplifted by the sweet amazing soul he covers up with all that faux crankiness.
The biggest of hearts lurk in the most unexpected places {as do the smallest}.
When something life changing like an illness or a loss hits your life, it’s guaranteed that your relationships will reorganize themselves, I’ve been there before and it’s not just me, anyone will tell you this who’s been there. The person you look to for support may be the first to flee, while your rock, your indispensible person might be who you least expected. I’ve been lucky this time around, I have gained so many amazing people and relationships on this trek. Encountered so much kindness and generosity, sincerity and strength. From the folks on my street I barely knew to the long ago friends who’ve popped up after 25 years. And next week, I’m having lunch with my plumber who is now my friend.
My only quandary is how to deal with the friends who’ve vanished. The folks I thought would be there and called once or twice early on and were gone, the “call me when you’re feeling better and we’ll have dinner.” Maybe I’ll never hear from them again which might be preferable. I don’t know how to answer, “how’s it going? what are you up to?” from someone who’s been incommunicado through all of this helter skelter madness, where would you begin? It’s not a matter of being mad, or holding grudges, that’s not me, it’s just really truly, where do you begin? I can’t imagine what I would say, how would I not feel alienated, estranged? I’m not the same person, you just can’t go through something this big and all encompassing and be the same person on the other end {of which there really isn’t one} and if someone hasn’t been vaguely tuned in to either real me or blog me, I just feel like they wouldn’t know me anymore. That’s why I’m so grateful to this blog and to everyone who reads it, skims it, stays tuned in even a little, because I will be able to see you a week or a year from now and not feel like an alien, not feel self-conscious, because you’ve stuck with me, you know where I’ve been and I am forever grateful to you for keeping me tethered.
Monday, August 6, 2012
Post Office
I was walking into the post office this afternoon with actual finished wholesale orders, hooray, actual productivity happened this week. I wound up walking alongside a big, beautiful, bald, black man. I only mention his color because it completes such a fine alliteration and I love a good alliteration. I said "nice haircut" and he looked at me, suppressed initial shock and laughed. We commiserated on how hard it is to shave one's head and he was impressed I was doing it myself and hadn't cut myself yet. He lamented that people think it's so easy to be bald, but it's a lot of work, amen. We reached the entrance and went our separate ways.
Sunday, August 5, 2012
So There!
The powers that be are wrong, wrong, wrong, Citizen Kane is the best movie ever made and should another film overtake it, Vertigo is not it. Vertigo isn't even Hitchcock's best, and while I love him, and The 39 Steps and Rear Window are among my favorite movies, they are not the best ever made. So there errant list makers!
Every year, my beloved Artbeat in Somerville has a different theme and logo and they sell t-shirts of the designs. Sometimes I buy the shirt, but I wind up never wearing it because high, constricting t-shirt necks drive me crazy, it's no great mystery where my kids get their sensory issues from. This year I bought the spaghetti strapped tank top which I never would have attempted to house the big kahunas in, but today I'm wearing it and I love it! So comfortable and on a hot day, no sweat underneath or between them, certainly no bra, it's bliss. I love how I look in the mirror with a cute skirt to match, I don't feel one bit less feminine, so there plastic surgeons! True, I can't work the cleavage, but do I want a man who's only criteria is cleavage? Should I be nominated for an Academy Award, my fabulous fashion choices would indeed by limited, which is a shame, but I think I can live with that. I would, I admit, like my hair back, I feel like I've experienced baldness fully, there's nothing more to gain, luckily according to my estimates, I think it should start growing back in 4-6 weeks, so there, chrome dome!
I've had the nicest damned weekend... wait, if it was nice, how could it be damned, that is a really odd phrase. It's remarkable how one's mood can be contingent on how their body is feeling. Compared to last week, I feel fabulous, yeah my feet are numb, my port is pinching me, my back is achy from the Neupogen shots which they call the "bone crusher", but this is nothing akin to where I've been so many times in the last year, different countries, different planets, so I feel great and really happy, so there stupid cancer! Actually, I've gotten off so lightly with the Neupogen, I get occasional mild aches from it, I only needed an advil once or twice, I've heard of people debilitated by it.
Yesterday I had a visit from a friend I hadn't seen in 25{ish} years and it was lovely. I kidnapped J from his dad to take him to our friend's arts and crafts party. This couple and my son are kindred spirits, artists all and I think they are his fairy art parents, they chat as peers about their ideas and it's adorable and really important I think, for kids to have other special adults in their life, so I am mightily grateful for their relationship to him and of course, I love them just as much.
This morning, I woke up to an empty house which doesn't seem to happen all that often and it was a slice of heaven to be able to just doze on and off until 11:00 a.m. Quiet, no rushing, no doing anything for anyone except me. I picked up a treat and an iced tea and spent 3-4 quality, productive hours in the studio and then someone called and asked if I'd like to come over for dinner... hell yes! Tomorrow I mail off three wholesale orders, start a long over due custom piece, and enjoy the day before I'm back in the tank on Tuesday which I don't even mind doing because I'm done with the Carboplatin which is pure evil, done with you Carbo, so there!!!
Every year, my beloved Artbeat in Somerville has a different theme and logo and they sell t-shirts of the designs. Sometimes I buy the shirt, but I wind up never wearing it because high, constricting t-shirt necks drive me crazy, it's no great mystery where my kids get their sensory issues from. This year I bought the spaghetti strapped tank top which I never would have attempted to house the big kahunas in, but today I'm wearing it and I love it! So comfortable and on a hot day, no sweat underneath or between them, certainly no bra, it's bliss. I love how I look in the mirror with a cute skirt to match, I don't feel one bit less feminine, so there plastic surgeons! True, I can't work the cleavage, but do I want a man who's only criteria is cleavage? Should I be nominated for an Academy Award, my fabulous fashion choices would indeed by limited, which is a shame, but I think I can live with that. I would, I admit, like my hair back, I feel like I've experienced baldness fully, there's nothing more to gain, luckily according to my estimates, I think it should start growing back in 4-6 weeks, so there, chrome dome!
I've had the nicest damned weekend... wait, if it was nice, how could it be damned, that is a really odd phrase. It's remarkable how one's mood can be contingent on how their body is feeling. Compared to last week, I feel fabulous, yeah my feet are numb, my port is pinching me, my back is achy from the Neupogen shots which they call the "bone crusher", but this is nothing akin to where I've been so many times in the last year, different countries, different planets, so I feel great and really happy, so there stupid cancer! Actually, I've gotten off so lightly with the Neupogen, I get occasional mild aches from it, I only needed an advil once or twice, I've heard of people debilitated by it.
Yesterday I had a visit from a friend I hadn't seen in 25{ish} years and it was lovely. I kidnapped J from his dad to take him to our friend's arts and crafts party. This couple and my son are kindred spirits, artists all and I think they are his fairy art parents, they chat as peers about their ideas and it's adorable and really important I think, for kids to have other special adults in their life, so I am mightily grateful for their relationship to him and of course, I love them just as much.
This morning, I woke up to an empty house which doesn't seem to happen all that often and it was a slice of heaven to be able to just doze on and off until 11:00 a.m. Quiet, no rushing, no doing anything for anyone except me. I picked up a treat and an iced tea and spent 3-4 quality, productive hours in the studio and then someone called and asked if I'd like to come over for dinner... hell yes! Tomorrow I mail off three wholesale orders, start a long over due custom piece, and enjoy the day before I'm back in the tank on Tuesday which I don't even mind doing because I'm done with the Carboplatin which is pure evil, done with you Carbo, so there!!!
Saturday, August 4, 2012
Toasted Marshmallow Heaven
What a difference a few red blood cells make. In the last few days I've spent a little time in the studio, and gone on a boy date with G to eat fish and chips and see Batman. We both loved it, but it requires a little more than the usual suspension of disbelief. Like how did he Bruce Wayne get from this part of the world to that in three minutes enabling him to save the world. I know all these sci-fi, superhero movies require we do this, but it's the movie makers job to make it plausible despite being in the realm of implausible and it can be done. Still, great fun, mindless entertainment, nice night out, first in ages.
The next night my friend C and I took J to the outdoor movie downtown to see It's a Mad Mad Mad Mad World which was the movie that was always on t.v. when I was growing up. I remembered the great ending but not how long and rage filled it was. Sheesh, one scene of angry men and screetching women after another, chaos, mayhem and wanton destruction... all in god fun, but I was bored silly. We only made it through half, I'll have to rent it so he can see the end. I'm just really happy that J is becoming so much more amenable to getting out and about.
I saw the film fest at J's camp featuring his John the Gentlemanly Cow which can be viewed here: http://www.youtube.com/watch?v=o-xTkDIImzQ It makes me smile no matter how many times I watch it. His filmmaking group did a spoof of the Hunger Games. His camp is called RISE camp and is on the grounds of one of our posh local private schools, the competing private school is Wheeler School which also has a summer camp. So they did the RISE Games where the winning home base is showered with endless milk and cookies and the losers are banished to "wheeler-no-fun-camp" and features Catnip Evergreen and Peeta Bread. It was zany and funny and clever and showed a bunch of kids having a damned great time.
I have friends from N.Y. that camp every year at Burlingame State Park in Southern Rhode Island, a tradition they started many years ago because it was equidistant between my friend and her sister in Maine. We usually go visit for the day, but last year the guys and I camped out with them and had the most perfect time. Couldn't camp out this year, had to get back for my shot and just not quite up to it, but J and I drove down yesterday after camp and got to have some campfire time and s'mores and we had such a nice time. J was really bummed we weren't sleeping over, but that makes me excited for next year because it's not often he wants to be away from home. G couldn't come due to football get-your-equipment day, but when I returned the lawn had been mowed to cap off a good day.
My plan was to pick up J at camp and hit the road, but after picking him up I realized I'd forgotten to get gas, forgotten to get my shot and myriad other forgottens. They should add some brain cells to the blood cells for a full on boost.
I'm about to go get today's shot where I have to go into the main hospital because the oncology clinic is closed. I hate going over there, I have to go to the dreariest floor, maybe they're all that dreary, although I think there's a new wing somewhere or other. The room doors are always open and I know it's bad form to look in, but I can't help peeking and you see such sadness. Mostly very old people, but some young and terribly emaciated and no one looks like they're coming out in good shape. I dread ever being on that floor. Sometimes my brief glances turn into indelible snapshots I will never forget, the most powerful of which was of an old lady sleeping while clutching a stuffed cat to her chest. She broke my heart and I don't even know why. Once you're an old lady, you've won the lottery, you've gotten to live a full, long life. And who knows, I'm likely to be clutching a stuffed cat at some point. I really don't know why I can't stop thinking of this lady who I know only from glimpsing for two seconds, but she's always in my mind.
The next night my friend C and I took J to the outdoor movie downtown to see It's a Mad Mad Mad Mad World which was the movie that was always on t.v. when I was growing up. I remembered the great ending but not how long and rage filled it was. Sheesh, one scene of angry men and screetching women after another, chaos, mayhem and wanton destruction... all in god fun, but I was bored silly. We only made it through half, I'll have to rent it so he can see the end. I'm just really happy that J is becoming so much more amenable to getting out and about.
I saw the film fest at J's camp featuring his John the Gentlemanly Cow which can be viewed here: http://www.youtube.com/watch?v=o-xTkDIImzQ It makes me smile no matter how many times I watch it. His filmmaking group did a spoof of the Hunger Games. His camp is called RISE camp and is on the grounds of one of our posh local private schools, the competing private school is Wheeler School which also has a summer camp. So they did the RISE Games where the winning home base is showered with endless milk and cookies and the losers are banished to "wheeler-no-fun-camp" and features Catnip Evergreen and Peeta Bread. It was zany and funny and clever and showed a bunch of kids having a damned great time.
I have friends from N.Y. that camp every year at Burlingame State Park in Southern Rhode Island, a tradition they started many years ago because it was equidistant between my friend and her sister in Maine. We usually go visit for the day, but last year the guys and I camped out with them and had the most perfect time. Couldn't camp out this year, had to get back for my shot and just not quite up to it, but J and I drove down yesterday after camp and got to have some campfire time and s'mores and we had such a nice time. J was really bummed we weren't sleeping over, but that makes me excited for next year because it's not often he wants to be away from home. G couldn't come due to football get-your-equipment day, but when I returned the lawn had been mowed to cap off a good day.
My plan was to pick up J at camp and hit the road, but after picking him up I realized I'd forgotten to get gas, forgotten to get my shot and myriad other forgottens. They should add some brain cells to the blood cells for a full on boost.
I'm about to go get today's shot where I have to go into the main hospital because the oncology clinic is closed. I hate going over there, I have to go to the dreariest floor, maybe they're all that dreary, although I think there's a new wing somewhere or other. The room doors are always open and I know it's bad form to look in, but I can't help peeking and you see such sadness. Mostly very old people, but some young and terribly emaciated and no one looks like they're coming out in good shape. I dread ever being on that floor. Sometimes my brief glances turn into indelible snapshots I will never forget, the most powerful of which was of an old lady sleeping while clutching a stuffed cat to her chest. She broke my heart and I don't even know why. Once you're an old lady, you've won the lottery, you've gotten to live a full, long life. And who knows, I'm likely to be clutching a stuffed cat at some point. I really don't know why I can't stop thinking of this lady who I know only from glimpsing for two seconds, but she's always in my mind.
Friday, August 3, 2012
Abridged
Just wanted to let you know I'm feeling 1000x better. In fact I'm so busy feeling better and knowing that a new chemo is just days away, I'm putting off posting in favor of getting out and about because I know each new day is unpredictable and if I'm feeling well enough to be out, I'm out. So no worries friends, I'm much improved and will report in soon.
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