Thursday, June 28, 2012

John Roberts & Robert Reich

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.

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.

Monday, June 25, 2012


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.

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.

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.

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.

Wednesday, June 20, 2012


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.

Tuesday, June 19, 2012


Today I dwelled in the Temple of Suckitude. Had chemo, that was fine, despite everyone running late. I was so sleepy and tired walking home, my legs felt like they weighed a thousand pounds and I kept tripping because I thought I was lifting my feet, but wasn't. I must have looked intoxicated, drunk woman in big floppy hat.

I picked up Jonah at camp, got him to piano, went to my studio {in the same building}, to find that some bags I'd left outside the door for someone to pick up had been stolen. People leave things out all the time and no one bothers with them.

I came home, crazy tired, but determined to grill some chicken for the boys. I went to light the grill, but it was out of gas. G came out to help me change gas canisters and while doing so, the whole underside of the grill crumbled into tiny pieces, from age and weather, no doubt. Not good because G is having a BBQ for his football team on Thursday because one of the players is moving away. A nice idea and I'm impressed they're organizing it themselves and all bringing the food {in theory}, so I have 36 hours to get a new grill, because I have so much energy and free time.

I ordered takeout from our local asian place as a replacement dinner and I got a staple in my volcano shrimp, which, yes, I found by biting it.

I'm writing today off as a total loss, and will try again tomorrow.

Monday, June 18, 2012


Monday is my favorite day of the week because it's the second day in a row I don't need to go to the hospital. It gives me a sense of freedom, leash loosened. Then before I know it, it's Tuesday and I'm back in the tank. Tomorrow is double chemo, a long day... I've got to try and change J's piano lesson to another day, it's too much.

A few days ago, I was at the hospital, in the elevator, going up to the third floor, Oncology. Riding up with me was a much older woman and she asked if I was comfortable. I told her I didn't understand and she said "you know, are you comfortable... like that," and she pointed to my head. I told her I was, that I'd gotten used to it, she followed with "because I'm walking around with this thing on my head," while she lifted her wig to show me her bald head, "and on days like today, it's awfully hot and scratchy, I can't stand it, maybe I'll just take it off, I mean if you're comfortable."

At first I thought she was judging me and then I realized what a very great compliment she was paying me. I told her that I thought she'd been through enough and at the very least deserved to be cool and comfortable. I told her that while I hoped my baldness didn't make anyone uncomfortable that if it did, that was really their problem to work out. It is what it is, you know? We happen to be two bald women, why should we hide? Why pretend it's otherwise and while I had a hat on most of the winter in public because bald heads get cold, a scratchy wig on my sweaty head on summer? Ugh, that is too much torture for me.

Sunday, June 17, 2012

Door Jam

Going only partially bald is the final indignity... except it probably won't be. When I went completely bald, my cranium was soft, smooth and required no maintenance. When you go partially, patchily bald, you have to shave, and shaving your head is no easy feat. It's time consuming, it hurts, you have to do it constantly and it's really hard to do a good job. Worst of all, it's prickly, grows quickly, and the back of your head scratches your pillow. Boo, hiss.

I got an insurance statement for the past 2 1/2 - 3 weeks... guess how much I cost in that small time period? O.k., I'll spill, $36,000... in only a couple of weeks, that's not even real money at that point, it's just surreal. An uninsured person with any kind of illness would have no choice but to declare bankruptcy and who does that ultimately serve? Currently, I owe $1,600 for that stint, but my secondary insurance will likely pay for most of it, thank god, and really, it's such a fluke that I have secondary insurance, were I not mid-divorce, at the time of diagnosis, I wouldn't. I thank god a lot for a lifelong atheist... I'm not sure who I'm really thanking, maybe "thank god" means "sigh of relief." The Neupogen shots that would have been $347 each at the pharmacy are $1,600 each at the hospital, four times per week. Getting them at the hospital is inconvenient, but it means hospital has to fight with insurance company and I'm out of the loop, at the pharmacy, I'd have to pay up front and be the one haggling. It just kills me how ultimately small the Affordable Care Act is and instead of trying to add to it and address additional insanities of our healthcare system, the only talk is of repealing it. I would think that just about everyone has been touched by someone with a serious illness, why doesn't that change their perspectives?

Today, J said he was bored and I said "go upstairs and make a movie", "o.k." That works for me! It's been a glorious day on the porch, and I'm about to go grill corn and burgers for dinner. I had plans to go out last night, but I was too tired, I hit an exhaustion wall yesterday and I'm always bummed when I can't do the things I want, but so be it... I'm actually pretty used to it by now.

I have a friend who does a lot of shows over the summer and fall and she's taken my inventory and combined it with hers and is selling it all together and is taking the same commission I take from her at my shop. Our stuff looks great together, she's a far better merchandiser than I. Today was the first day she gave it a shot and apparently it's going really well which boosts my confidence because I tanked at the last wholesale show I participated in.

Tomorrow J starts day camp and I'm taking G shopping to get ready for his month at camp which starts next Sunday. Usually by now, I'm ready for a break, but this year, I really don't want him to go. It will be too quiet without him and I'm really enjoying his company these days. I like chatting with him and he makes me laugh and really, every time I see him standing in a doorway, how close his head is to the door jam, I'm amused.

Saturday, June 16, 2012

Third Row

At 5:30 yesterday evening I went out to eat with Griffin and we both ordered fish and chips. At least I passed on the chips in favor of pasta salad, but when Griffin couldn't eat his beer-battered and fried fish, I finished it for him and at 10:00 a.m. the next day, I'm still full. I feel like there's a grease swamp in my belly, I'm just not used to eating heavy food like that anymore, although gawd, in the moment, it was so good. I think though, what I really need to find is a good lobster roll, or better yet, a big, fat lobster.

Jonah got {very willingly} kidnapped by his girl-buddies from school yesterday and taken to an amusement park for the first time. Two hour drive each way, a day in the sun, having what appears to be a blast and a half and that kid was one wired maniac when he came home after 10. He finally konked out in my bed mid-sentence {complaining about not being tired and that he'll never fall asleep} and snored for the first time ever. I can't even blame the cancer, I haven't had the energy for this kind of outing in some time, and am in awe of the parents that do. This parent in particular is always taking the kids on great outings, I don't know her well, but she's like J's enrichment coordinator and he has such fun with these girls! The sad thing about our neighborhood is everyone goes to different schools, and they're all headed in different directions next year. I hope they stay in touch and I bet they will because girls know how to do that unlike, ahem... boys.

I've decided I have to buy a car by October, I've got to get out of denial, because the van was treacherous, truly unsafe in the snow, the past two years. I usually want things that are within my means which is a good thing, it's why I'm never underwater, I don't want a Lexus, I don't covet or consider such things. I want a bottom of the line vehicle, a Kia or a Hyundai with a third row of seats that's one or two years old. New would be a thrill, but I'm realistic. What pisses me off is that I can't even have my modest desire because the third row adds $5-$10,000 onto the price which isn't feasible. A car period isn't that feasible, but I truly need a safe vehicle, so I have to figure out how to get one. It makes me mad that I can't have something as simple as a third row of seats especially when I use them all the time shuttling kids around which I like to do.

Then again, I'm typing this from my glorious porch with the glorious new outdoor sofa which is heaven on earth. I listen to the news and I realize how lucky I am, but I wonder, who are these people that just go out and buy Lexuses and Mercedes? how are there so many of them when there's such desperation out there? I'm an NPR junkie but I'm taking a break from the news because I can't listen to that snarky Romney-thing, he's like fingernails on a chalkboard. I think there should be a Make-A-Wish Foundation for adults with cancer, instead of disneyland I'd ask for a car with a third row of seats.

Thursday, June 14, 2012

Peas in the Pod

Exhausted. Every time I'm feeling good, I over do it and then I crash. I'd be in bed right now but I can't convince J to go to bed at 6:30p.m., he's no dope. We went to Four Town Farms today, mainly to pick peas and secondarily strawberries. My very favorite thing to do is sit outside with J eating peas in the pod and they're hard to come by... stores rarely carry them and the growing season is short and easy to miss. Today we picked 3 lbs. and would have picked more, but my companion started hopping around and said that being around so many peas, made him need to pee.

So we headed in from the field, took care of that, and then picked some strawberries. I was over dressed and hot as hell, because I'm not supposed to be in the sun and when the woman at the scales told me there was a 3 lb. minimum for strawberries and we only had 1.85 lbs. and would have to go back out I wanted to cry. I looked at her and said "please don't make me go back out there, I don't think I can do it." "Really?" "Really!" Very grateful for that bit of rule breaking and compassionate humanism.

Skinny boy and I came home and sat outside eating peas and I said I was going to go in and lie down for a bit and he said "NO, I think you should stay here with me and keep chatting about random subjects." I stayed, and we did, he has so many worries about the environment and greedy corporations "only caring about the green of money and not the beautiful green of the earth." Luckily we were able to focus on the beautiful green of our peas and the trees next to the porch.

At the farm he pulled me aside and said I looked sad. I wasn't sad, I'm rarely sad, just tired. I told him I probably get that serious face when I'm tired or thinking, and he said no, it's a sad face. And that made me sad because it made him sad. Vicious circle of sad.

I think it's just how I look, I have frowny face inherited from my mother. They're called Marionette Lines and I'm always obsessing about them to friends who tell me I'm crazy. But boy thinks I'm sad and that's no good. Stupid genes.

Wednesday, June 13, 2012

Not Just One Thing

There are over a hundred different kinds of chemotherapy drugs and often more than one are combined to make countless varieties, then if you add in different dosages, different timetables, the possibilities are endless. When I was first diagnosed and headed for chemo, a lot of people told me that they or someone they knew did great with chemo, and worked right through it, or worked part time and were just a little tired.

My first three months of chemo knocked me down for the count and I couldn't imagine how any of these things could be true. What's wrong with me? Why am I such a weak person? But after receiving only Taxol yesterday, which in case you were wondering is made from the bark of the Pacific Yew tree, I feel just fine. Yesterday afternoon I needed a nap and I was a bit wobbly in the evening, but last night and today I feel absolutely fine. Flushed in the face from the scareoids, but that's no biggie and passes in a few days. So yes, there is quite a difference from chemo to chemo. I'm getting Taxol every week and every third week they add on Carboplatin which packs a bigger punch, so that week to two weeks will be worse, but not nearly as bad as the first 3 months. Carboplatin is derived from "metal salts", whatever the heck a metal salt is and it's the drug that's wiping out my white blood cells.

So I guess while it seems helpful, it's best not to share about friends who had no problems with chemo, because chemo isn't one thing. Some are utterly debilitating and some not, best to let the person wait and see for themselves without expectations that can leave them demoralized.

I've been on a cleaning, organizing and purging binge the last few days, making the most of the rainy weather. Packing up winter stuff and most impressively, my dining room is lego-free. If you've ever been in my dining room you understand the depth of this feat. SuperWeirdGuy Productions and all their inventory, has been moved upstairs to the small extra bedroom and there is a table cloth and candles on my dining room table where we can actually now eat, what a concept. It's a veneer-topped mahogany table, the top of it scratched and stained beyond repair, so I want to sand it off and paint it but I can't decide on a color. Periwinkle blue or bright red with silver glitter scattered on. The walls are two shades of orange, it's a tough decision, I've been pondering it for ages, but will I ever do it, that's the question. I'd love to do a collage, but I know I'll never get to that.

I'm doing a lot of just closing my eyes and tossing in the trash and adding to the ever growing yardsale pile, ah, but will I ever actually have a yardsale?... Having a yardsale requires commitment, picking a date and getting everything from basement to driveway, oh, but what a dream.

Tuesday, June 12, 2012

Ponds and Lakes

I'm happy to say at last, that I have heaps of white blood cells, veritable ponds and lakes of them. Running low on the stuff that makes blood coagulate which correlates to the two mysterious bleeding episodes last week, tiny cuts that flowed and flowed, but no big deal.

So I had chemo today {finally}, just the one drug, so I came home woozy, went to sleep for a few hours and feel relatively fine.

G's gone out with friends to shoot hoops and J is in a movie making mania, whistling {literally} while he works which always makes my heart swell, especially since he never thought he'd be able to whistle {I still can't}. He used to hum when he was happy, but now he's whistling which is nice to be around.

He's posting Videos on YouTube, my two current favorites are:  and  although the second half gets a bit long. Muffin Love and Peel are other faves.

Monday, June 11, 2012

Maple Syrup

Never drive to school to pick up your kid half in your jammies because you figure you're not going to be getting out of the car... just picking them up out front and zipping right back home. That's what I did today after G's last final exam, but on the way home, hitting an incline my junker of a vehicle started making a bad sound, smelled like maple syrup and the temp needle zipped up to "H". At least that part worked because all of a sudden there was smoke heaving out the vents into the car and from under the hood, and before I knew it I was walking home from the mechanics. I only mention the maple syrup smell because I swear I heard someone mention that on Car Talk one time, and damn it if it doesn't smell exactly like maple syrup. I think that has something to do with burning coolant, maybe not, but if your car ever smells like maple syrup, take it in quick.

Another hefty investment in the Mazda money pit despite the last two times this year I had to do the same and I swore, never again. I know I'm in denial, I need to buy a car, but it's such an unpleasant thing to do and now is not a good time. I said that before I got sick, but now it really, truly isn't a good time, but I'm spending more to keep this thing on the road than buying something new. I've got to get over this denial thing and decide what to buy, so I'm ready next time it tries to commit suicide. What kills me is that I barely drive the thing these days because I'm usually too wacked out on drugs or tired to drive, so I venture as far as school, the studio and the grocery store, so it's not like wear and tear is bringing this nonsense on, it's got a death wish.

But what to buy and where {and how}? I can't make these decisions right now and I'm hung up on my desire to keep the third row of seats. I still often fill the van up with kids needing rides and without the third row I can't do it, but it's so much more expensive to get something that size. Yet I'll regret it if I don't, I'll feel terrible, I'll feel guilty, but who am I kidding? I can't afford it. Yay Republicans, tax cuts for the rich, yahoo, and please, please, please take away my health insurance.

Heading to chemo tomorrow and those freaking white cells better be present and accounted for. This project has to get back on track, moving forward, so there is some kind of end in sight, and I need to stop eating junk food. Today I drank a diet coke for the first time in seven months, not a good sign, but I was drowning my sorrows, I suppose there are worse vices.

Sunday, June 10, 2012

Diamonds and Rubies

Today I'm feeling like I look like Michael Stipe or an all-powerful empress from a faraway land. If only there were a jewel encrusted tiara in my goody bag I wouldn't have this identity crisis. I can tell you this, I don't like the stubble on my head. I preferred being completely bald and smooth. This time around, having lost only large patches of hair, I've got a lot of stubble and I can't figure out how to get a close shave... I don't have experience head-shaving and this isn't included in any of the pamphlets they give out.

I had dinner with some friends last night and I fear I was a babbling lunatic. I spend most of my time with doctors and nurses, or with children, or lying prone in one place or other, so that when I get out in public I turn into a squawking menace. It's not pretty.

I ate chinese food last night and a big bowl of ice cream today all while I have a fridge overflowing with vegetables. I'm off track, got to get back with the program, tomorrow is a new week, so it's a perfect time to start, and here's to hoping that when I go in on Tuesday I have gobs of new white blood cells.

Friday, June 8, 2012

Excessive and Shameless Parental Bragging

Oh yesterday, sweet yesterday, was a fine day indeed, which I’ve wrapped up in a pretty box to take out and look at when I need to. In the morning I saw my frightened little kindergartener who clung to me and sobbed day after day, week after week, stand tall, proud, confident, and most importantly happy as a clam, graduate elementary school. Not only that, he won an award. J is mini-me, we don’t win awards and none are expected, G wins awards, but lo and behold my slice of sugar pie won a Presidential Academic Achievement Award complete with the signature of our favorite prez and an adorable little souvenir pin.

To win this award you have to score in the top percentile bracket on two or more subjects on the NECAP {our version of the ubiquitous standardized test}. About 12 kids did this and this group did not include mine, no problem, no award expected, we were pleased as punch for the kids that received them. J scored close, higher than I would have expected for one with such a fear of math, but not quite high enough, again, no problem, I’m already proud as can be. But then about four more kids got the award by being nominated by their teachers, for being close and showing outstanding progress this year and whatever else, blabbity, blah, I blanked out as soon as they called the first name which was the one most familiar to me.

This is just the confidence boost my boy needs and he is so proud. He’s asked if I will have the certificate framed for him, you bet! I cried a little saying goodbye to his teacher who strikes me as a truly special person. This was her first year in the classroom and you’d never know it. Her three kids are up and out and she went back to school to start a new career and she brought with her magnificent life experience, love and poetry. She was invaluable to both J and I this year and my appreciation knows no bounds. J told her he had the best year ever and it was all because of her. Excepting kindergarten he has loved every year of school and we have both loved every teacher, so this is high praise indeed. There are quite enough pains in the ass out there, they get under our skin and we waste so much time dedicated to how they annoy us, I know I do, it’s easy to forget how utterly outnumbered they are by the truly fabulous.

In the evening was J’s improv classes performance and it was magnificent. All these nutty kids with different strengths, different senses of humor, creating these clever, funny scenes together all off the cuff, spectacular, brave and truly funny. Followed by brownie celebration at the house all of which are gone which is a little shocking. My boys can eat a lot of brownies!

Today we slept crazy late and he’s back to work on a stop motion animation he started the other day and now has a whole summer ahead of him for daycamp and zany projects. J goes to a fabulous camp where you are not required to do any sports at all, he will be doing animation, film-making, improv, fun with duct tape and such while I’m hanging out with my nurse buddies at the hospital.

Wednesday, June 6, 2012

Ever Receding

I shaved my head today and I couldn't be happier. I'd much rather look like an exotic empress {or Vulcan}, than a middle aged dude with frizzy dead hair and an ever receding hairline.

My doctor is surprised and perplexed that my white cells are not increasing with the Neupogen shots. He's going to have to get clever and come up with a new plan at this point, and I'm disappointed in my bone marrow because I'm supposed to be a super healer.

I'm disappointed to be so discombobulated and off track, but ecstatic that I can enjoy elementary school graduation tomorrow morning and his first improv performance in the evening. In between lots of brownie baking for celebration afterwards.

I told J that I'd invited some friends to the performance and when I told him who, he said "oh, they're going to really love it!"

Tuesday, June 5, 2012

Counting Cells

Arghhhh! Even with daily Neupogen shots my white blood cells are almost non-existent, so skipped chemo again. You have to have at least 800 per whatever for chemo which is still pretty low and I have 200. I still had to sit in the chair for two hours while they counted my cells in the lab. Oh where, oh where have my white cells gone? Are they with my glasses? My keys? My sanity?

Anticlimactic and worrisome.

Sunday, June 3, 2012

Porch Sofa

Sunday and Monday are the only days I don't have to be at the hospital, a small grace that makes these days blissful. It's a warm, breezy Sunday and I don't have to do anything or be anywhere. Of course I have tons to do, but I don't have to be near a hospital. I'm slowly plodding my way through final payroll for the shop, an awful job anytime, but with my befuddled brain, it's taking me forever and a day.

All I can really think about is my porch. I just splurged and ordered an outdoor sofa from Amazon, free super-saver shipping on something as large as a couch, woo-hoo! I love my porch more than anything. The whole house could float out to sea, but if I still had my big front porch, I'd be fine. I've always wanted a porch and this is the first dwelling I've occupied with one. In preparation, G and I moved the existing, old nasty furniture to the lawn and hosed off the whole porch and all of it's contents. Maybe later I'll get the lights up. I have a hard time spending money on myself and things right now are tight, but I just plain figure I deserve to take shady, breezy, outdoor naps this summer. I think my health insurance should cover it, like therapy.

Oh yeah, my insurance doesn't cover therapy. All this talk about repealing the new healthcare laws scares the shit out of me because the insurance I bought on my own turns out to be kinda sucky. Doesn't cover $1,200 blood transfusions or $347 Neupogen shots {4 times a week for 9 weeks}, luckily the insurance I have through my estranged husbands job is picking up most of the slack, but I only have that through the end of the year or possibly one more, so I'll need to fear a relapse and financial decimation, or just plain being denied treatment because I can't pay. And while it sucks that a healthy person needs to buy insurance to subsidize me, that's civil society, it's called humanity. And what goes around often comes around, someday, some young, healthy person will be subsidizing them. This system is insane. The built in profit margins are cuckoo-beans, when a four shot cancer treatment can cost $180,000, I've read about treatments that are $500,000, that's not even real money, I mean, compare it to minimum wage. I'm grateful to big pharma for making these drugs, but I just can't figure out why Americans are charged so much more when many breakthroughs happen at our subsidized college research labs. Of course I'm really happy that Anne Romney can purchase $1,000,000 dressage horses because they're therapeutic for her MS. I wonder if my insurance covers a million dollar horse. I'm glad it's all working out for the Romney's.

I've paid for health insurance my whole adult life through one company or another and rarely used it until the last few years, so no, it's not o.k. to drop me because now I'm expensive. I think I've been a responsible citizen, I've never required costly incarceration, or {mercifully} needed welfare or food stamps, or job training, I've not clogged up the legal system or asked anything from anyone, I donate to charities, I volunteer in my community, I just need healthcare and I'm willing to pay a fair amount for it, Mostly, I can't bear the ignorance, the propaganda. People barely getting by, who can't afford healthcare, or barely, groceries, howling against "obamacare", cause he's from Kenya I guess, and you can't trust anything from "over there". I just can't wrap my mind around how long we've been arguing about this and then when we make some miniscule progress, all the energy goes to taking that tiny step back. This is real for me, it's not just a newspaper article, I'm worried.

Friday, June 1, 2012

Catch It

Crashing is so painful after feeling marginally well for so long, but crashed, I have. Yesterday was just awful, I couldn't get off the couch when J came home from school, and then he started to worry about me. He asked if this was normal and I mustered a cheerful "yep" and he said good because "I will call 911 so fast if it's not normal". It's good to know 911 has super powers.

Today not so great either and when J came home I could tell he wasn't right and so I took him to the pediatrician, just intuiting I shouldn't wait until Monday, and sure enough he has strep throat which I don't think he's ever had. Instead of caring for him and cuddling on the coach and stroking his head, I'm avoiding the poor little dude like the plague, scared to death that I'll catch it because one more ailment or medication will put me over the edge. I've never, ever responded to a sick kid this way, germs be damned, don't care if I catch something or not, I don't even care who's kid it is.

The Neupogen shots are making my bones and back ache and the Taxol is making my feet numb which may be permanent and I don't like it and 8 more weeks of it scares the hell out of me.

We both need to get right before next week because Monday night is the "Sports Awards Dinner" which the long one has invited me to and Thursday is both elementary school graduation and Improv performance and I'm not missing any of those!