I never thought I'd be saying this, but thank you John Roberts! I hadn't heard a single voice in the media suggesting the Affordable Care Act would be anything but partially to completely overturned. Until the other day when reading an article by Robert Reich who predicted what would happen and turned out to be 100% on the money. I was already a big fan of Robert Reich's, but now I'm worshipping at his altar, that dude is smart, smart, smart and I always like his articles, but this is a whole new level of credibility for him and he was already pretty darned credible. Pedestal for Robert Reich please, and I'm not making a short joke. I'm much looking forward to Jon Stewart harassing Fox and CNN for getting the announcements dead wrong, what a bunch of dopes.
When Romney goes on about repealing the Act as his first task in office, I have to wonder why {or if} this really plays to republicans. I'm sure it does to the millionaire's club, but the majority of republicans must represent the majority of americans... people who are struggling and need healthcare, have been touched by serious illness in some way, or been denied coverage, or been in a costly accident or need birth control, or maternity coverage or are self-employed and priced out of the market. I just can't imagine the callousness that causes playing politics with such a human issue.
I heard so many specious arguments on the radio today, made by the other side. Lamenting how unfair it is for "young" people to be forced to buy insurance they don't need. Apparently young people are as invincible as they think they are... they don't get in car accidents, skiing accidents, need birth control, treatment for illness and STDs, none of that, young people are all perfectly healthy and shall remain so.
I hope they stop arguing about it and we can move on to other facets of reform as they are myriad and so desperately needed, says the one receiving $72,000 in medical care each month. I often wonder where I'd be if I didn't have health insurance. Would I be losing my house, declaring bankruptcy, receiving substandard care?
Beyond pondering healthcare and admiring Robert Reich, I've been consumed with harassing the parents at J's camp who park in the handicapped spaces at pick up time even though there are plenty of spaces. Always the biggest, shiniest SUVs, it's sad how predictable some markers are. I completely shamed some woman yesterday who was laughing and thought it was funny, at first. J said "you know some kids would be embarrassed if their mom did that, but I think it's really good because you are totally right and she is totally wrong and people should speak up." Yesterday we were watching a cartoon and we kept making the same comments at the same time because we both talk while we're watching t.v. and he said "boy we think alike." Oh that boy, that boy, he slays me.
I am loving not going in for shots every day, I get to take the week off from cancer, yahoo.
Thursday, June 28, 2012
Tuesday, June 26, 2012
True Blood
I was walking over to chemo today and met a new neighbor because I recognized her landscaper and stopped to say hello. Turns out she is an artist and is currently having an exhibit at the gallery in my studio building, I love the small world that is Providence.
I was a little out of breathe by the time I got here but didn’t give it a second thought because I was carrying my laptop and my overstuffed messenger bag and it’s sunny out. I got blood drawn which is always the first thing to happen, and I told my nurses that I still had the numbness in my fingers and toes. They passed that on to my doctor in the weekly game of telephone, and he decided not to do treatment today because we don’t want to risk permanence, if it’s still lingering next week, he’ll have to lower my dose. I was disappointed because I worry that delaying treatments is in cancer’s favor, and also because it extends my done date. My bloodwork came back quickly and my nurse asked me how I was feeling and I said “great”. I do feel great, I wasn't kidding, I feel just fine, I had a pretty relaxing afternoon/evening with little boy yesterday and a good morning. She started to laugh and showed the piece of paper to the next nurse and said “she says she feels great.” Next nurse starts laughing too. First nurse {and have I mentioned how much I love these nurses?} says, you’re not going home afterall. My white blood cells are great which means, since no chemo, no shots this week, rejoice! I am, however, having another blood transfusion due to crazy low red blood cells {which carry oxygen and give you energy}. Blood transfusions take forever, so it’s going to be a long day.
Apparently, I’m so used to struggling and feeling crappy that it’s become completely normal for me. So if I only feel a little crappy, if there's no glaring symptom, that equates to me as feeling great. I honestly and truly don’t remember feeling any differently, which means that when I’m done and I slowly recover from chemo, I might feel better than I ever remember feeling which is something wonderful to look forward to.
I really am surprised my numbers are so low, the other two times I needed transfusions, I was really dragging, but this, at least explains my difficult couple of days last week, why I got so emotional and why I just couldn’t handle a hyper, procrastinating, perpetually teasing, super-sized teenager. It helps explain why I’ve been feeling particularly overwhelmed, even though, aside from the numbness, I thought I was feeling pretty darned good. So comparatively speaking, I feel great, but I'm comparing myself to how I felt during the first chemo which was 50 shades of dreadful, I just have no clue anymore, what I'm supposed to feel like. I do, however, recall how good I feel after the Transylvanian special, so with no daily shots, this is going to be a great week.
I was a little out of breathe by the time I got here but didn’t give it a second thought because I was carrying my laptop and my overstuffed messenger bag and it’s sunny out. I got blood drawn which is always the first thing to happen, and I told my nurses that I still had the numbness in my fingers and toes. They passed that on to my doctor in the weekly game of telephone, and he decided not to do treatment today because we don’t want to risk permanence, if it’s still lingering next week, he’ll have to lower my dose. I was disappointed because I worry that delaying treatments is in cancer’s favor, and also because it extends my done date. My bloodwork came back quickly and my nurse asked me how I was feeling and I said “great”. I do feel great, I wasn't kidding, I feel just fine, I had a pretty relaxing afternoon/evening with little boy yesterday and a good morning. She started to laugh and showed the piece of paper to the next nurse and said “she says she feels great.” Next nurse starts laughing too. First nurse {and have I mentioned how much I love these nurses?} says, you’re not going home afterall. My white blood cells are great which means, since no chemo, no shots this week, rejoice! I am, however, having another blood transfusion due to crazy low red blood cells {which carry oxygen and give you energy}. Blood transfusions take forever, so it’s going to be a long day.
Apparently, I’m so used to struggling and feeling crappy that it’s become completely normal for me. So if I only feel a little crappy, if there's no glaring symptom, that equates to me as feeling great. I honestly and truly don’t remember feeling any differently, which means that when I’m done and I slowly recover from chemo, I might feel better than I ever remember feeling which is something wonderful to look forward to.
I really am surprised my numbers are so low, the other two times I needed transfusions, I was really dragging, but this, at least explains my difficult couple of days last week, why I got so emotional and why I just couldn’t handle a hyper, procrastinating, perpetually teasing, super-sized teenager. It helps explain why I’ve been feeling particularly overwhelmed, even though, aside from the numbness, I thought I was feeling pretty darned good. So comparatively speaking, I feel great, but I'm comparing myself to how I felt during the first chemo which was 50 shades of dreadful, I just have no clue anymore, what I'm supposed to feel like. I do, however, recall how good I feel after the Transylvanian special, so with no daily shots, this is going to be a great week.
Monday, June 25, 2012
Rehab
New day, new week, yay. I made it to URI for the football competition, it was a beautiful day, warm and breezy, I met an interesting woman, a cancer survivor who approached me and was wonderful to sit next to and chat with. I found the place with no problem, there wasn't too much walking and the team did great, so everyone left happy.
I utilized the "find food" abilities of my GPS for the first time ever and stopped for a lobster roll which I knew would be nearby, between URI and camp but never would have found by myself. The camp drop-off went well, I was so happy to learn that the C.I.T.'s weren't allowed their cell phones the first two weeks because I consider camp to be rehab. I envision a cabin full of teenagers with twitchy thumbs from texting withdrawal.
I had some really good evening porch time which is restorative and while I only sleep in one hour increments, I stayed in bed for 12 hours which I really needed. Tomorrow is double chemo day, and the rest of the week I have a smattering of work related tasks that need to get done to keep the embers of my businesses at least warm. Glad to say, I feel much calmer and more settled.
I utilized the "find food" abilities of my GPS for the first time ever and stopped for a lobster roll which I knew would be nearby, between URI and camp but never would have found by myself. The camp drop-off went well, I was so happy to learn that the C.I.T.'s weren't allowed their cell phones the first two weeks because I consider camp to be rehab. I envision a cabin full of teenagers with twitchy thumbs from texting withdrawal.
I had some really good evening porch time which is restorative and while I only sleep in one hour increments, I stayed in bed for 12 hours which I really needed. Tomorrow is double chemo day, and the rest of the week I have a smattering of work related tasks that need to get done to keep the embers of my businesses at least warm. Glad to say, I feel much calmer and more settled.
Saturday, June 23, 2012
Nuclear Meltdown
Today should have been a good day. It started off well, really well, and had really good parts and then just went down, down, down the hill. I don't know if it's the culmination of all the frantic camp preparations, but I did what I rarely do and lost it on my son. Maybe he needed to hear it, maybe not, either way, it feels awful, I'm too soft, too empathetic to be a good parent.
As the day's gone on the numbness and pain in my hands and feet has been steadily building, so I can't blame the hot weather anymore. It's joined now by knee, hip and jaw pain which is from the Neupogen shots. I dropped said son off across town and stopped into Whole Foods to get something to eat. I know I need to eat through nausea, I'm used to it, I know I feel worse if I don't eat, but it's still hard, still unpleasant.
Walking into the store was increasingly difficult and by now I'm really having trouble walking, it's scary. The joint pain from the shots will go away, I know that, but not necessarily the neuropathy from the Taxol. My plan for tomorrow was to meet G at URI where he's in a football throwing competition and then take him to camp which isn't far away. I really want to go, I want to watch, but I don't know how big the URI campus is, or where the football field is and now I'm worried it will be too far to walk. I can't decide if I should miss another event that is important to me and have his father take him or just do it. Maybe I'm keeping myself back from things because I'm worried I'm not up to it, but how do you know if you were up to it unless you try it? My brain can't seem to make decisions anymore, I'm always fretting over one minor decision after another.
I don't often lose it the way I did this afternoon, thankfully my neighbor talked me down, she called at just the right time. Maybe I'm supposed to have periodic breakdowns like this, but they're really not my cup of tea, crying gives me a headache. I'm exhausted and going to bed.
As the day's gone on the numbness and pain in my hands and feet has been steadily building, so I can't blame the hot weather anymore. It's joined now by knee, hip and jaw pain which is from the Neupogen shots. I dropped said son off across town and stopped into Whole Foods to get something to eat. I know I need to eat through nausea, I'm used to it, I know I feel worse if I don't eat, but it's still hard, still unpleasant.
Walking into the store was increasingly difficult and by now I'm really having trouble walking, it's scary. The joint pain from the shots will go away, I know that, but not necessarily the neuropathy from the Taxol. My plan for tomorrow was to meet G at URI where he's in a football throwing competition and then take him to camp which isn't far away. I really want to go, I want to watch, but I don't know how big the URI campus is, or where the football field is and now I'm worried it will be too far to walk. I can't decide if I should miss another event that is important to me and have his father take him or just do it. Maybe I'm keeping myself back from things because I'm worried I'm not up to it, but how do you know if you were up to it unless you try it? My brain can't seem to make decisions anymore, I'm always fretting over one minor decision after another.
I don't often lose it the way I did this afternoon, thankfully my neighbor talked me down, she called at just the right time. Maybe I'm supposed to have periodic breakdowns like this, but they're really not my cup of tea, crying gives me a headache. I'm exhausted and going to bed.
Friday, June 22, 2012
Household Shaving Incidents
Oh heavenly wind and rain, finally you arrive, just in the nick of time. My favorite home luxury succumbed to the heat today, the in-fridge ice maker, I'm barely surviving. Just went on an emergency ice cream run to Cumby's and even their freezers are not handling things well and the hospital fridge was out of water. The only one handling things well seems to be my neighbor who mowed his giant lawn today and then trotted down the street with his mower to mow his rental property, some of us are made of far sturdier stuff.
I don't think I've eaten any real food today, just ice cream, water and a popsicle, and have to work on not fretting that a single bad food day will make my cancer explode. The popsicle was the result of a random act of kindness from a camp counselor at pick up time, who just walked over to me silently, and handed it to me while I was sitting under a tree waiting for dismissal. She knew darned well those popsicles were only for the kids and honestly... I don't think the director was pleased, but who would begrudge me the last popsicle... um, maybe the parent who approached me and said, "how did you get a popsicle?" I choose to dwell on the nice lady handling the popsicle box.
It is only a matter of time before I'm carted off from a freak head shaving accident, I am not getting the hang of this. It was suggested to me to use gel shaving cream, so I purchased yet another shaving product. The stuff squirts out as gel and then foams up into shaving cream, it's expandable {which is a little freaky}, so the canister is smaller and I'm sure all in all, still costs more. Today my goal was to get a good shave behind my ears because I learned I'd been missing that spot and it's rather treacherous to get at without cutting your ear off, but I've become obsessed so I was going for it. I squirted a bunch of gel into my hand and aimed for behind my ear but I got it right smack in my ear. How the hell the you get rapidly expanding shaving gel out of your ear? I was having a panic attack envisioning what's left of my brain becoming engulfed in consumer shaving product. Everything I did just felt like I was shoving more shaving cream into my head. Lot's of poking and rinsing later, so far so good, there haven't been any adverse effects, but it's really only a matter of time.
I don't think I've eaten any real food today, just ice cream, water and a popsicle, and have to work on not fretting that a single bad food day will make my cancer explode. The popsicle was the result of a random act of kindness from a camp counselor at pick up time, who just walked over to me silently, and handed it to me while I was sitting under a tree waiting for dismissal. She knew darned well those popsicles were only for the kids and honestly... I don't think the director was pleased, but who would begrudge me the last popsicle... um, maybe the parent who approached me and said, "how did you get a popsicle?" I choose to dwell on the nice lady handling the popsicle box.
It is only a matter of time before I'm carted off from a freak head shaving accident, I am not getting the hang of this. It was suggested to me to use gel shaving cream, so I purchased yet another shaving product. The stuff squirts out as gel and then foams up into shaving cream, it's expandable {which is a little freaky}, so the canister is smaller and I'm sure all in all, still costs more. Today my goal was to get a good shave behind my ears because I learned I'd been missing that spot and it's rather treacherous to get at without cutting your ear off, but I've become obsessed so I was going for it. I squirted a bunch of gel into my hand and aimed for behind my ear but I got it right smack in my ear. How the hell the you get rapidly expanding shaving gel out of your ear? I was having a panic attack envisioning what's left of my brain becoming engulfed in consumer shaving product. Everything I did just felt like I was shoving more shaving cream into my head. Lot's of poking and rinsing later, so far so good, there haven't been any adverse effects, but it's really only a matter of time.
Doritos and Hot Dogs
I'm impressed, we pulled off a BBQ for 30 teenaged boys in oppressive heat, I did errands all day in my infamous van who's A.C. functions at around 5% and still lived to tell the tale. What do referenced teenaged boys bring to a BBQ? Ballpark Franks, liters and liters of soda and heavily flavored Doritos. Except for the boy that brings a stack of steaks, his own salt and pepper, and grills them up for the others who come running when they hear the word steak. This boy knows who he is. He's the object of my new mamma-crush. I want to give him a big hug and tell him what a fine young man he is. The mamma-crush is completely innocent, it only involves baking cookies and spewing embarrassing affirmations. You've got to admire a kid who grills his own meat and eats last, especially one as adorable as this. I've given up on grown-up crushes, so I'll just enjoy my mamma-crushes and get the chocolate chips and flour out.
Considering how many people were over, there is very mild mess left and that I'm leaving to my son. Once it got dark, they came in the house and were jammed in my living room, like clowns in a car and if odor is a tangible thing, when I came in from the porch I walked head on into it. Yes, they'd opened the windows, but didn't notice the storms were still down. Rest assured, the screens are now in place.
I wonder how these ethnic kids feel coming from the south side to the east side, to this big house and lawn. Some definitely seemed intimidated, or maybe just uncomfortable around an adult they didn't know, or maybe it's how I look in particular. I wish I knew how to make them more comfortable, but there really are glaring discrepancies in how different people live and where we travel. I can't begin to put myself in their shoes. My son's school is roughly 95% free lunch. Seriously though, they had a blast it was nice to hear the sounds wafting over to the porch.
Got Jonah to camp this morning rearing to go for silly hat day. He's off with his giant green velvet leprechaun hat, a big grin and a thumbs up. I said "have a good day" and he replied "I'm gonna have a great day." He's lamenting that the camp day is too short, for anyone who knows this child, this is a miracle. And yeah, I kinda wish the camp day were longer too. He comes home and says it feels like it's a whole different day and there's not enough time at camp for all the stuff he wants to do.
I'm hunkered down in my bedroom with the cats and the lone A.C. maxing out and I'm going back to bed. Later today, the serious camp packing begins. And crap, I've gotta find time to go get my shot.
Considering how many people were over, there is very mild mess left and that I'm leaving to my son. Once it got dark, they came in the house and were jammed in my living room, like clowns in a car and if odor is a tangible thing, when I came in from the porch I walked head on into it. Yes, they'd opened the windows, but didn't notice the storms were still down. Rest assured, the screens are now in place.
I wonder how these ethnic kids feel coming from the south side to the east side, to this big house and lawn. Some definitely seemed intimidated, or maybe just uncomfortable around an adult they didn't know, or maybe it's how I look in particular. I wish I knew how to make them more comfortable, but there really are glaring discrepancies in how different people live and where we travel. I can't begin to put myself in their shoes. My son's school is roughly 95% free lunch. Seriously though, they had a blast it was nice to hear the sounds wafting over to the porch.
Got Jonah to camp this morning rearing to go for silly hat day. He's off with his giant green velvet leprechaun hat, a big grin and a thumbs up. I said "have a good day" and he replied "I'm gonna have a great day." He's lamenting that the camp day is too short, for anyone who knows this child, this is a miracle. And yeah, I kinda wish the camp day were longer too. He comes home and says it feels like it's a whole different day and there's not enough time at camp for all the stuff he wants to do.
I'm hunkered down in my bedroom with the cats and the lone A.C. maxing out and I'm going back to bed. Later today, the serious camp packing begins. And crap, I've gotta find time to go get my shot.
Wednesday, June 20, 2012
Nothing
Today was the anti-yesterday, a good day. I must make an important correction, however, to yesterday's post, it was Lava Shrimp, not Volcano Shrimp stapled to itself. I made that mistake when ordering once, and I didn't like volcano shrimp one bit, even though it was staple-free.
I had a nice day with tall-boy and we succeeded in acquiring emergency-new-grill which will do the job, but is far less aesthetically pleasing than the last one. We had to go to Home Depot and then Lowe's because the ones at HD were really crappy and they all insist on having a side burner now which is really dumb I think, I'm sorry, but I'm not sautéing anything outdoors while I'm grilling, just not... ever. And, can you hear the angels singing? They come assembled for no extra charge and because I still have a van, it fit. The thing is, I can't remember this morning. Did I really take J to camp this morning and then go get my shot and then spontaneously meet a beautiful friend for tea and then take G shopping and then to lunch and then to practice and then I drove home again? Did I drop them at their father's for the night at 7p.m. after dinner? Did that just all happen today? Everything is such a blur to me, time blends together and I barely know what day it is, I really don't, I have to check the calendar over and over. I think I had a steroid induced power-up, but now I'm just confused and my feet are numb. Numb hands and feet are from Taxol and I run the risk of it being permanent and this is the worst it's been, it's been slowly creeping up on me all day. In the past it's been the soles of my feet being tingly, but now it's my big toes and the toes next door too... tingly and numb, kind of burning... worrisome.
I told their father that I just couldn't do chemo afternoons with the kids anymore, I don't feel safe driving, my nurse said I was crazy when I told her what I've been doing, that I should be resting after chemo, taking care of myself, sleeping, recovering... but I felt like I've had that conversation with him before, and before and before, and I'm not sure why, I feel a bit like I'm losing my mind, traveling in circles. My chemo schedule doesn't fit well with his work schedule, so he said "it's too bad it's on Tuesday." And I thought, yeah, it's too bad I have cancer. I don't really recall much I've needed or wanted fitting with his work schedule, but he seems to get where he wants to go. I suggested he take his son out to dinner on Friday night before he leaves for camp, just the two of them, special time, but he said he already had plans. Things are optional for some of us and for some they're not but not everyone knows the difference and that includes me. I think we both have it all backwards.
I can't remember if I mentioned that I almost hit some people with my car on the way to camp pick up. In my chemo-addled brain they weren't there and then suddenly they were. Why do I feel like I'm imposing, asking personal favors from the person who is these children's father? Why is this feeling so ingrained and why am I asking for the same things month after month. Yesterday scared me, but I've scared myself before. I can't keep it up though, I'm just not driving chemo day anymore, it's not responsible, it really is crazy. I've been doing crazy things all along, but I always have, feeling like I didn't have a choice. Maybe I'm being unfair, he put the A.C. in my window and helped get the grill out of the car, I don't know, I don't know what the rules of life are. The only thing I know is I don't know why I still have the kids on chemo day.
Cancer has changed everything and in some ways it has changed nothing.
I had a nice day with tall-boy and we succeeded in acquiring emergency-new-grill which will do the job, but is far less aesthetically pleasing than the last one. We had to go to Home Depot and then Lowe's because the ones at HD were really crappy and they all insist on having a side burner now which is really dumb I think, I'm sorry, but I'm not sautéing anything outdoors while I'm grilling, just not... ever. And, can you hear the angels singing? They come assembled for no extra charge and because I still have a van, it fit. The thing is, I can't remember this morning. Did I really take J to camp this morning and then go get my shot and then spontaneously meet a beautiful friend for tea and then take G shopping and then to lunch and then to practice and then I drove home again? Did I drop them at their father's for the night at 7p.m. after dinner? Did that just all happen today? Everything is such a blur to me, time blends together and I barely know what day it is, I really don't, I have to check the calendar over and over. I think I had a steroid induced power-up, but now I'm just confused and my feet are numb. Numb hands and feet are from Taxol and I run the risk of it being permanent and this is the worst it's been, it's been slowly creeping up on me all day. In the past it's been the soles of my feet being tingly, but now it's my big toes and the toes next door too... tingly and numb, kind of burning... worrisome.
I told their father that I just couldn't do chemo afternoons with the kids anymore, I don't feel safe driving, my nurse said I was crazy when I told her what I've been doing, that I should be resting after chemo, taking care of myself, sleeping, recovering... but I felt like I've had that conversation with him before, and before and before, and I'm not sure why, I feel a bit like I'm losing my mind, traveling in circles. My chemo schedule doesn't fit well with his work schedule, so he said "it's too bad it's on Tuesday." And I thought, yeah, it's too bad I have cancer. I don't really recall much I've needed or wanted fitting with his work schedule, but he seems to get where he wants to go. I suggested he take his son out to dinner on Friday night before he leaves for camp, just the two of them, special time, but he said he already had plans. Things are optional for some of us and for some they're not but not everyone knows the difference and that includes me. I think we both have it all backwards.
I can't remember if I mentioned that I almost hit some people with my car on the way to camp pick up. In my chemo-addled brain they weren't there and then suddenly they were. Why do I feel like I'm imposing, asking personal favors from the person who is these children's father? Why is this feeling so ingrained and why am I asking for the same things month after month. Yesterday scared me, but I've scared myself before. I can't keep it up though, I'm just not driving chemo day anymore, it's not responsible, it really is crazy. I've been doing crazy things all along, but I always have, feeling like I didn't have a choice. Maybe I'm being unfair, he put the A.C. in my window and helped get the grill out of the car, I don't know, I don't know what the rules of life are. The only thing I know is I don't know why I still have the kids on chemo day.
Cancer has changed everything and in some ways it has changed nothing.
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