Nurse Island

I felt the best I ever have post-five hours of chemo yesterday. I got small boy to piano, and picked up a van load of large boys after practice, got everyone home safely, got my peeps feed and through homework and off to bed and it really wasn't a struggle. I had trouble getting up for my vampy blue plate special this morning, but I got to the hospital by 10:30 for the 4 hour procedure and then I crashed. My blood pressure went down to 70/40 and while it's up from that now, I feel really kinda zonked. I guess my body has a lot to assimilate, having had nine hours of foreign matter pumped into it over two days. I'm sometimes frozen in disbelief at the ordealishness of this ordeal.

I had a list of things I was going to do this afternoon which I guess was a silly notion. Instead I came home to my wrecked house, too messy to enjoy, dishes to do, laundry to fold, bills to pay, it's so hard to keep up even when life is normal. I laid in bed with the cats for a couple of hours feeling very lazy, at the same time, I couldn't quite move. I have to have long talks with myself, me explaining to me that lying in bed doesn't make me lazy if I have no choice, reminding myself of the extenuation circumstances {like I can really forget}. Cutting yourself a break is a hard thing to do.

The chemo ward is a large square room with an O-shaped nurses island in the middle. The perimeter of the room is lined with individual, 3-walled chemo cubicles, each open facing nurse island. Each cubicle has a big lounge chair, a visitors chair, a giant IV pole on wheels that plugs into the wall behind the chair, and receptacles for different kinds of waste -- regular trash, medical waste, bio-hazard and such.

We all unplug ourselves at times to roll to the bathroom and it seems to be common courtesy to look straight ahead and not at the people in the other cubes. I can't help myself, I peek. It's usually all old, and oldish folks, I've never seen anyone there my age until yesterday and then again today. Sometimes I wish I were doing treatments at Women and Infants because there'd be all women and some my age and I'd feel less freakish and unfairly picked on, and I bet there'd be more chatting. At my hospital, I've never seen one patient talk to another one, we all stay obediently in our little cages. Yesterday, I asked my nurse if the other woman had breast cancer too and she said "oh no, it's very sad" and I knew not to ask for details which is incredibly difficult for me. Today the same woman was next to me and I said "hi" when I walked by and every time I walked by and peeked at her she peeked at me. I wanted to go talk to her, to say hello, introduce myself, but I just couldn't. I don't know why, I'm not a terribly boundary-oriented person {some would say I have a problem in that regard} but I just couldn't do it, I'm not sure why. But I have this woman on my mind and I'm really wishing her well.

True Beautiful Blood

I’m having my long-awaited blood transfusion tomorrow and I have to admit that if I succumb to another season of True Blood, I’ll be watching it from an entirely different perspective. Usually squeamish, I’ve become a big fan of other people’s blood, now some vampire blood, that would really do the trick and I’d definitely have some of Eric's. I’d have anything of Eric’s.

I did much better with chemo today without the Benadryl and with half the steroids. Although I confess, it induced a frantic junk food binge. Tomorrow it’s definitely fruits and vegetables. None the less, I was able to walk home, take J to piano and then pick up Griffin and friends from after school sports and it's 9p.m. and I feel fine.

My new oncologists name is Dr. Sikov with a long I and I’m always worried I’m going to accidentally call him Dr. Psycho. Luckily he doesn’t seem at all psycho and I like him far, far, much better than Doctor Previous. I also really like the nurses that work on his team, I liked the last nurses too, but these two seem less frantic and more on top of things. They’ve been really accommodating with the daily shots. I have to make an appointment with the schedulers and times are limited and inconvenient, but they let me come in when I need to and they’ve been great about getting me in and out quickly, unfortunately it’s the check-in procedure at the front desk that can take a long time. I start to vibrate when I get off the elevator and the line is stretched and winding towards me.

Ah, but that beautiful blood will calm me down and put me right.

Osteospermum

I’m loving this beautiful weather and enjoying sitting on my porch as much as I thought I would, it’s so nice not to be freezing cold. On the other hand I’m losing my hair {again} and it’s not so easily disguised in summer, as this is no time for fleece hats. I’m surrounded by trees rustling in the wind and pots of gorgeous annuals. My favorite is Osteospermum, yep, the most beautiful flower with the most horrible name. It sounds like a bone disease mixed, with... you know. Really, it’s a daisy like flower that comes in bright orange and yellow with a thin ring of lavender around the center, divine.

I survived a whole Pawsox game yesterday, thank you iPad and Del’s Lemonade and it was well worth it. I went because J’s school chorus sang the National Anthem and we stuck it out because there were fireworks afterwards and they let the chorus kids and their entourages, come down to the field for them, so we laid on blankets and looked up at the fireworks and it was glorious. I love fireworks. I love holding small hands.

While I was videotaping the performance on my new iPhone {yes, Apple should really sponsor this blog}, I was thinking to myself... how do I know it’s taping? Shouldn’t there be a light or something? When I stopped taping the light went on, so yeah, duh, there’s a light, so I really didn’t tape the song, but really, would I ever have watched it?

I have a zillion small tasks to get done today all while looking forward to dinner with neighbors which makes me wonder why your friends who are neighbors don’t get called “friend”, they get relegated to the generic “neighbor” status because of their proximity. Not fair, and quite innacurate in this case.

Tomorrow I’m back in the Fish Tank for a long haul, so I’m enjoying today. I have a long list of questions, churning, redundant questions to torment my oncologist with, poor guy.

No Going Back

Today is a strange day, one of those weatherless, skyless days. I’ve reached exhaustion and am looking forward to a blood transfusion on Tuesday with chemo which will make for a long day, but I’m just spent so it will be worth it. My whole self is so depleted, I’m having trouble speaking, the words don’t come out right and it’s frustrating, stammering, halting.

When I play Scramble, I see a word and then trace it in backwards, over and over until I realize what I’m doing. My scores are plummeting while G’s are going up, he’s slaughtering me.

I have salt and pepper hair. When it fell out {the first time}, the dark hairs were tenatious and a few clumps of them remained all through chemo, shaved off, of course, but you could see the stubble. As my hair grew in, my face was ringed with dark hair, the other day I noticed it was gone, I thought it was just my imagination perhaps, but next day sitting with a friend she asked “where did your dark hair go?” Later that night I realized that it had fallen out, no big clumps this time, just a trail of a thousand eyelashes. I can’t pull it out in breezy tufts like when it was long, but if I pull some out between my finger tips, it’s mostly the dark coming out. So the first chemo killed my white haired cancer cells and this one is after the dark haired cancer cells. It’s odd. Everything feels odd these days. I look like an old man with a receeding hairline, I’ll probably shave it off again in a few days when it gets sparser, which seems redundant. Been there done that, I’ve been loving my soft new hair and now I’ve got to start from scratch and worry about scalp burn when I go outside. It’s been seven months now since this odyssey began. A lot has happened, I’ve gone from warrior to dishrag, optimism and energy waning. Maybe it’s the fatigue, the relentless treadmill of treatment and testing. It’s hard to recall my previous life and I’m only starting to realize there’s no going back.

Cherries and Kitty Cats

I think sitting on the porch on a warm day with a breeze cures all. That plus fresh cherries, my favorite fruit because they’re a full spectrum experience. Cherries are gorgeous, I could look at them all day, delicious and healthy and they just plain make me happy.

A small, possibly stray black cat came meowing up onto my porch today and I’ve fallen instantly in love. Beautiful green eyes and just a few white hairs on her neck. Friendly and skinny, she was so happy to be pet and climbed onto my lap. I know the last thing I should be doing is touching stray cats in my immuno-suppressed state, but I can’t resist a kitty. When I was a kid, I would only have black cats, I wouldn’t pick a kitten unless it was pure black, one white hair and forget it. I have no idea what my obsession with black cats was, but now I have a real fondness for calicos, I think they have the sweetest dispositions. I’ve put out the word on my neighborhood listserve, I hope she finds her way home... but comes back to visit.

Fruit Salad and the Avengers

Hearing my moroseness on the phone, my friend C suggested some mindless escapism at the Avengers. The Avengers is a very loud movie. The Avengers has some great Joss Whedon one-liners, and a lot of fighting. I think The Avengers should be rated TBM for teenage boy movie.

A few minutes after I sat down my back started to hurt, I thought it was the chair. Then it was my hip and then my ankles and as we left the movie it was mostly my jaw aching. So much for escapism, I was acutely aware of this ache moving through me the whole movie, and I realized it’s from the Neupogen shot I had today. They cause joint ache for some people, and for some reason I was sure this wasn’t going to happen to me, so I wasn’t really worried or paying attention.

Still waiting for a break. Although I know my mood is linked with my low red blood cells  because this is exactly what happened last time. I got all weepy and tired and felt like I just couldn’t cope and then as soon as I had the transfusion I felt ridiculously much better, so I guess I’ve got to schedule that sooner rather than later.

I woke up this morning with a splitting headache and a beautiful fruit salad left for me on my porch. There are even fresh cherries in it and yes, fruit salad left by kind and thoughtful person mitigates headache and cherries, beautiful cherries. I’m going to resolve to go get my shot and have a good day. It’s grey out today, but J is in a chorus concert tonight at school which preceeds arts night. I hope his teacher is there so we can give her a great big hug for all the help and support she’s given us this year. We’ve been so lucky with the teachers he has had, well the main classroom teachers anyway, I’ve got nothing good to say about the art teacher who insists on being referred to as Dr. and gives my boy fits of dread or the gym teacher who insisted my nervous, skinny, scared of gym, kindergartner needed to "be a man". But the classroom teachers, couldn’t have asked for better, every year, he has been with a special human being, who really got and appreciated him, and there’s not much better than your kid having a great teacher {or coach}.

Swish

A few months ago I watched the movie 50/50 about a guy with cancer. I guess my movie would be called 70/30 which is better than 50/50 but still petrifying. I’m not afraid of the dying part, I figure it’s just like going to sleep for the last time and I don’t believe anything comes next. If it was just me, I could accept the 30, but damn, when you have kids it’s a different bag of potatoes. I don’t want my kids to be the tragic ones who’s mom died when they were young, that’s just awful. And not to be narcissistic {yeah, say that with a straight face while you’re writing a blog about yourself}, but I think those two guys really need me and I can’t imagine anyone or anything filling the void they’d be left with. And yet it happens, this happens to children. My friends would miss me, but they have other friends and full lives, I would hope they’d think of my sometimes, fondly and with laughter, but their lives wouldn’t be forever altered. My boy’s lives would be. I’m the one they can always count on for anything, and prods them and laughs with them and makes up silly nicknames for them, I make them feel safe and that’s the best thing I’ve ever done. I want to help them with their kids, I want them to be able to count on me for a good long time, as it should be. I have got to make the 70 feel more real, more inevitable than the 30 and normally that’s what I’d do innately, but this time, it’s just not happening. All I can see is the 30 and it’s my new least favorite number.

There are so many books out there, so many theories, philosophies, that promise good health and cures everlasting. I have no idea how to disseminate the good from the bad, the relevant from the bullshit. So many vitamins, herbs, supplements and of course the most convincing are always the most expensive. My latest foray into good health comes from Ayurvedic medicine and it’s call Oil Pulling {or swishing}. A friend just started doing it and recommended it to me, so I did my usual reading up.

This technique requires you put a tablespoon of Sunflower or Sesame oil {although other oils might be fine too} in your mouth and swish it around vigorously, pulling it back and forth between your teeth {hence the pulling part} for 15 minutes. The belief being that it is pulling all the excess bacteria out of your mouth and into the oil creating a toxic concoction that you spit out into the sink and down the drain. It is also meant to “massage” your tongue, tapping into the power of all the pressure points there that correspond to the different organs in your body. I used Sunflower oil, I can’t even imagine a mouthful of sesame oil, that stuff is strong, I put maybe two drops in my hot and sour soup. My friend has succeeded in doing this for the required 15 minutes, but I must be weak jawed with an exaggerated gag reflex because I’ve only made it 6 and then 14 seconds.

I have to admit though, that after spitting and rinsing, my mouth actually feels cleaner, my tongue, however, is definitely not getting a massage by being scrunched up in fear and horror in the back of my mouth.

I may keep trying it, I may not. Cancer is the full-time job you don’t need a resume for. I need to sleep 14 hours a day, 5 trips to the hospital waiting room per week, green smoothie swilling, pill popping, arm stretching, bill opening, insurance calling, blood transfusing fun all on top of the stuff you always have to do. Grocery shopping, house cleaning, laundry folding, school lunch making, kid driving, teacher meetings, food prep, endless dishwashing, end of school year activities. And dare I include paying work? Oh to have a real job with disability, this self-employment thing can really bite you in the ass in the good old U. S of A.

Fish and Chips

I felt much better yesterday going to the game and being around other people and just real life in general... even in the rain. I’m usually someone who not only enjoys, but needs a fair bit of time to myself, but it seems that’s not working for me these days. Being alone sends me to the precipice, I need distractions.

If I buy my Neupogen shots at the pharmacy and give them to myself, or more precisely, make my nurse neighbor give them to me giving in to my lifelong fear of needles, they would cost $247 each and my insurance won’t cover them. That’s four times per week for the next 8 to 10 weeks, I’m not even bothering to do the math. If I go to the hospital to have the shots, my insurance will cover it {I think/I hope} and/or the doctor will advocate on my behalf because I need them. Getting them at the hospital will cost my insurer way more than me getting them at CVS, the whole system is so twisted. Counterproductive, that’s how Wikepedia could describe our healthcare system in just one word. Maybe it’s for the best, otherwise, I’d be popping up at the house of a different neighborhood nurse or doctor everynight saying “hi, can you give me this shot? thanks, see ya.”, I’d run the risk of becoming a serious nuisance, if I haven’t already.

I took G to dinner after the game and ate fish and chips, on top of this weekend’s french fries I’m feeling pretty guilty, got to get back to the blender. But oh, I do adore spending time with that boy.

Sad and Beautiful World

It's crazy how quickly the emotional pendulum can swing, but I guess that's what crazy is. It's a sad and beautiful world, that's a quote from one of my favorite movies. Yes, it's a sad and beautiful world. At the very same time, all I want is to live a full beautiful life, and go to bed and pull the blankets over my head, and those two don't jive.

I had such a lovely weekend, warm and sunny in all respects and today is grey and foreboding, again, in all respects. I went for chemo this morning but my blood counts are the same as last week so it's another no go. The nurse explained that I was no longer "chemo naivé" {I'll say!}, but she was referring to the fact that I've already had chemo, so this time it's on a compromised body which no longer has the tools to bounce back as it once did.

As much as I hate chemo, missing it, now two weeks in a row is not good for me and if I wasn't overwhelmed enough with the whole process, I now have to start going in 4 times per week for Neupogen shots which will help my white count, but not the red which means I'm going to need another blood transfusion soon and I'm having a hard time finding out if my secondary insurance covered it. I guess it doesn't matter because you need what you need. And Neupogen is just another layer in this wacked out toxic cocktail I'm living on, with a whole host of potential side effects of it's own.

I missed G's entire basketball season and now baseball season too, almost. Today is the last week and today is his last game pitching. In his indirect, boy way, he let me know that he'd really like me to come and so I'm hoping the weather holds out and that I can find the field in South Providence.

Weekend

I had one of the nicest all round weekends I can remember. Tomorrow back in the fish tank. Trying not to think about it.

Pie and French Fries

The infection slowly brewing on my incision is perfectly heart shaped. The powers that be have a twisted sense of humor, do they mean that adversity loves me? Well, that would be one big, fat case of unrequited love. Anxious to hear what the oncologist will say about it on Monday. I'm disappointed because I was proud of being a super-healer, I just didn't consider the chemo knocking out my white blood cells so quickly and so profoundly.

It is a truly glorious spring day today. I'm sitting on the porch with a perfect breeze wafting by. J and I just walked up the street to a little festival going on up there, because I had a hot tip that the french fry cart was going to be there. Best french fries ever and I'm not one who usually cares for fries with that. They chop them and cook them right there and have roasted onion aioli and other such tasty dips. G and J agree, best fries, yes, we brought some home for the long and lazy one, because we're pushovers. First greasy food I've had in ages, but so far, so good.

J has been fixated on baking a pie. His catchphrase has always been "I Like Pie", except he doesn't like pie. However, recently he decided that everyone should like at least one kind of pie. He's reading a book called Pie, acquired at the most recent school book fair. It has a picture of a pie and a cat on the cover, so it was a no-brainer of a purchase, and apparently, is a very good book.

All week I promised that we'd bake a pie on Saturday, which... is today. I don't bake, I cook, store bought baked goods are good enough for me. Baking is too mysterious, too much like science. I cheated and bought a crust, I had to borrow a paring knife from a neighbor to peel the apples and we forgot to add an ingredient, but none the less, we have a very lumpy, bumpy, messy pie cooling in the kitchen. It might not be the best pie to have when you're deciding whether to like pie or not, but my boy is happy... in his eyes it's a beautiful pie, and so it is.

Pete the Plumber

I’ve been tired this week, I don’t feel my blood counts bouncing back up. So when I arrived at my studio and headed towards my “reserved” parking spot, Imagine my dismay at being greeted by a big black van parked diagonally across not one, but the only two handicapped spaces in the lot. I don’t think so, Pete the Plumber, with your phone number emblazoned on the side of your van. Not until that moment have I ever really appreciated having a cell phone. I’m a big time conflict avoider, but not today. Hello is this Pete the plumber? Would that be the same Pete the plumber who is illegally parked in not one, but two handicapped parking spots? And then I told Pete the plumber exactly what I thought of his parking strategy and I damn it, it felt good. And then, since I’m chickenshit, I high-tailed it out of there before Pete the plumber came to move his van which I suspect he did very quickly. I can only hope that Pete the Plumber isn’t hoping I get cancer or something equally dreadful, apparently some people do that kind of thing.

Curious George

I have a very low hairline with a distinct widow’s peak, so I'm looking a bit like Curious George right about now.

The other day while I was in the fish tank waiting for my blood tests to come back, a nurse popped in to siphon a tad more saying my doc wanted to run a CA2729 test. Intriguing, never heard of it. In all my begging and pleading with my previous doctor about how we will track my disease... isn't there a blood test? some sort of cancer marker? antibody test {correctly, I've learned called an antigen}?, you know like the PSA test for prostate cancer, anything? No, no she told me over and over, there was no such test for breast cancer and then she'd leave and send in the social worker to calm the hysterical patient.

So I'm curious about this new test, this CA2729 and trusty iPad companion in hand, I look it up... it's a breast cancer antigen test. Can you hear me screaming? It's not a perfect test, maybe not even a good test, it is fairly unreliable and hence controversial. But it exists and should it's existence not be revealed to a patient asking over and over for exactly such a test? I told her straight up, I'm someone who needs data, I can't just wander around for five years with no clue what's happening inside me because we both know once I'm symptomatic it's way too late. I need some kind of data. Isn't there any blood test to monitor?

Hello CA 27.29. Unfortunately, she's deprived me of knowing what my number was while I had big ugly tumor, I would like to know that number, I hope it was really fucking high because then I'd feel great about the fact that my number now is completely normal. I would have liked the data to make a correlation between my tumor and post-tumor numbers and who the hell is she to make the decision that I'm not entitled to that information because she's not a fan of the test.

The other thing I'm wondering about is why isn't foregoing reconstruction, but having a plastic surgeon sew you up one of the options? I wish I had thought of this earlier, but who thinks of these things in the moment? I didn't know how simply Frankensteinian my incision would be, but it's probably not a lucrative enough job for a plastic surgeon. All in or all out I suppose. It's strange, looking in the mirror and seeing such androgyny having been curvaceous and long haired most of my life. Very surreal. Not traumatic, just really, really odd.

Wishing Well

The other day, I ran into an acquaintance, and a nutty one at that, who I sincerely hope doesn't read this blog. There are many humorous encounters I have that I'd love to write about but don't because I don't want anyone to feel bad. Usually people say wacky things because they're nervous, they don't know what to say, so they blurt something out like "my mom died of cancer when I was a kid and I turned out O.K." I might be shocked sometimes, but I'm never upset because I know they're really just trying to connect and damn, it's an awkward situation, I'd put my foot in my mouth too {as it's my specialty}.

This person, put her hand on my arm and said in a whispery voice "no one wished this on you... no one wants this for you, you have to know that..." Hmmmm, silly me, that's one thing I never considered, that I got cancer because someone wished it on me. Well, what a freakin' relief it is to know that isn't the case, or who the heck knows what else some prankster or douche bag's been wishing on me. Phew.

Five Minutes

It used to take me five minutes to walk to the hospital, now it takes 10 at least because I'm so fucking slow. I consciously try to make my legs move faster but they respond with -- lady, this is how fast we go, we ain't goin' any faster so just get with reality and leave us alone.

Spent two hours in the chemo bay which I'm now calling the Fish Tank because that's what it feels like {all the different specimens trapped and on display}, only to be turned away because my blood counts are too low for treatment. A little unsettling and anticlimactic, but as tired as I am right now, my counts will rise everyday, and I'll have a good week. So yay, I'm looking forward to a good week, but right now I'm going to take a nap.

Anderson Cooper

A few weeks ago I looked like Michael Stipe and now I think I look like Anderson Cooper although I’m not having the same effect on men, damn you silver fox.

I'm amazed to learn that you can wake up with bed-head when you're hair is only about 3mm long, and I have to say that if it falls out again I'm gonna be pissed, been there done that, no need to be redundant.

The garden in front of my house is looking nice {if you ignore the weeds and uninvited grass} and I’m going to blow the last of my cash on herbs and flowers to plant in pots this week because I think watching them grow will be as medicinal and restorative as 90 lbs. of daily asparagus.

Warning: shameless parental bragging ahead. I got the best mother’s day card from Jonah. He made it in school, it says MOM and lists my traits and not among them are tired, sick, always in bed, cranky at bed time... it says creative, friendly, good taste, smoothie maker, responsible, crafty, doesn’t get mad easily, listener {most of the time}, optimistic, takes care of people, loveable, loves back, The one mom to rule them all!!!!!! and then he handwrote “and the best mom I could ask for, Happy Mother’s Day.” Aw shucks, plus we've been emailing all weekend while he's been at his dads and you really see a different side of your kid when they're emailing, it's really interesting.

I couldn't want more than that, except that maybe, for just once, in his entire life, G’s allergy misery to peak, some other day, but this year was no exception, to each on past. Since he’s the competitive one, who loves when people do nice things for him... I showed him Jonah’s letter and said “little dude kicked your ass”. His list, surely, might be a little different -- asks me annoying personal questions, oppressively expects birthday cards, tries to hug me, always tells me to turn off the t.v. and empty the dishwasher...

This is all secondary, however, to the shock, disbelief and mutual grief we are feeling upon learning there are only two episodes left of Game of Thrones. Damn, I’m just going to have to read those books, but there’s soooooo many and they’re so long and I think I’ve forgotten how to read a novel.

Sunday night is trash night in my neighborhood. I have been a daily newspaper reader for as long as I can remember. When I was gainfully employed I read the paper at lunch, and for years now, my most entrenched and reliable ritual has been to read the paper with breakfast. I’m such an avid paper reader that if I go away for a few days, I read all the papers that have piled up when I get home. But since November and this crazy thing took over my life, I don’t read the paper. I don’t know why, I just don’t. They pile up on my porch all week and then I toss them in the recycling box on Sunday. Not a single part of my life has been untouched, even the innocuous parts and it’s somewhat inexplicable. I really can’t figure out why I’m not reading the paper.

Asparagus

Yesterday was the last day my shop was open until the farmer's market returns from the great outdoors in November. That place was a touchstone for me, a tether. My goal for every week was to simply get there on Saturday and I think I only missed one or two of them entirely. There were quite a few I only stayed for an hour or two, but it was still a triumph to get there and always lifted my spirits. My new roomies kept the place going for which I'm forever grateful and also indulged me when I was there by allowing me to socialize instead of actually working.

My Saturdays kept me from getting completely isolated and I always knew in a grim week that Saturday at the bustling, friendly market would make me feel better and it always did. Many thanks to all the friends, old and new who stopped by, all the lovely farmers, everyone. It was also my cash source. I grabbed the money from the drawer for my weekly grocery and whatever money, so I didn't rack up credit card debt and the money that went straight into my account from charges was used to pay out vendors. That was my high tech accounting system. So no more Saturday's, no more cash. Plan B, Plan B, Plan B... what was that again?

I spent late afternoon in the studio yesterday and just as I got home, my neighbors, who are more like family than neighbors were on their way out on a dinner date to Chez Pascal, our beautiful neighborhood french restaurant. W asked what I was doing so I put on my most pathetic face and said, "oh, going home to eat a tuna sandwich for dinner and mope around missing my kids cause they're at their dads tonight... I'll probably just channel surf. So yeah, naturally, I went out to dinner with them and had a great time. A cathartic, lovely time. I've become an expert date chaperone because I have very few single friends, so who am I gonna go out with? And what is better than going to dinner with people who's plates you can eat right off off without even thinking?

I've never liked asparagus and it turns out asparagus is the anti-breast cancer food, although according to my cure every disease with food book, you'd have to eat about $30 worth of asparagus every day and I suspect after one day of that you'd never eat asparagus again even if you loved it, but I don't eat it at all. Until we ordered an asparagus appetizer which was to die for. So now I'm hoping to incorporate at least some asparagus into my diet... occasionally. I would think grilled on a salad would be good.

So people, if you need a date chaperone... I'm your girl, and no cancer talk I promise.

David Rakoff

I'm still sleeping until 11a.m. every day and so only getting in about an hour of work. Last night I went with friends to see the This American Life live simulcast. They did a live show in NYC and broadcast it into movie theaters. My friend P asked what level of NPR junkie I was and I had to confess, I'm a 12 out of 10. I'm a liberal cliché.

It was a good show but I had a piercing stomach ache the whole time which was distracting. David Rakoff did a piece, David Rakoff has cancer, I knew this, and that he's almost one year younger than me to the day. His piece was funny, sad, and triumphant, he talks too fast and sadly, some parts are missed. One thing that came across to me despite how subtle and unself-pitying he is that sense of isolation he feels from other people and situations, I could relate. A dinner party where the subject du jour is how people would like to change, what personal growth they would like to attain and how pointless this line of conversation is to those of us who's cells are dividing rapidly. We're different.

He made me sad and melancholy as I realize how different I am. My life is in a whole different place now. It's not about plans and goals, it's about staying alive and the gruesome things we have to do to achieve that. How we spend our time is different, for me a whole day of the week is lost to chemo. Another good portion of a day each week is calling the billing dept. numbers on medical bills to make sure they've billed both my insurers before billing me. Soon it will be negotiating with them on the unpaid portions. There's the PT and the time and energy it takes to eat only healthy, fresh, food. Cancer is a full time job and it's isolating and we wonder why we're different. Especially I would think, those of us with less usual and more aggressive cancers. Well, I've never been one to be mainstream, but why can't I have one of those not too unfriendly breast cancers, where you have surgery and go home to live your life in peace.

I feel different, separated, isolated, but I'll keep muddling through, that's the point I suppose, the goal of all this "treatment" is so I'll have the privilege of muddling through some more.

And I know it's not just me, so many people are muddling through... dealing with diabetes, MS, infertility, degenerative eye diseases, autistic children, all sorts of things. I need to get some perspective I suppose, but damn it, cancer just seems like one big bad all consuming mother fucker right about now.

This is a really good article by David Rakoff: http://www.nytimes.com/2011/04/17/magazine/mag-17lives-t.html

Lost Qi

I had the worst acupuncture of my life today. If good acupuncture can unblock your qi, my qi is trapped in a dungeon right now. The hospital I get treated at kept saying they were building an acupuncture room and were going to offer it for free, yippee... yip no! They told me they'd hired someone and did I want an appointment, hell yes. So I went today and turns out the room isn't done so they stuck me in a chemo chair in the bright, noisy ward and I'm sorry to generalize, but the distance in finesse between eastern and western trained acupuncturists is more than an ocean.

This woman who mentioned "her partner" more times than I can count and went on and on about her perfect job and perfect life and taking her two dogs to work with her and running on the beach with them, blah, blah, you're gay, big deal and thank you for sharing the details of your perfect life with me while I'm here for some relief from chemo and my perfect-life threatening disease. Ugh. Then she jabbed some needles in me and left.

I spent the next 10 minutes? 20 minutes? I don't know, however long I was in the chair screaming in my head, I almost pulled the needles out myself and ran for it. And then I realized the absurdity of being in a chemo chair on a non-chemo day, that is just wrong and I did it to myself. I fantasized about Dr. Xu the acupuncturist I've been seeing at the other hospital coming to rescue me. Transporting me to her warm little room where she silently moves around the table like a graceful jaguar inserting needles here and there that I don't even notice, as if she's been doing it since birth. Making sure I'm comfy, cozy and warm before turning out the lights and turning on the nice soft asian music. Her broken english pep talks, I'm coming back Dr. Xu, you're a great deal and free was too good to be true.

This whole day just sucked. J had a horrible dentist appointment which put him over the edge, so we had hours of drama and misery, I finally curled up on the couch with a blanket over my head, sometimes you just don't know what to do. It was mostly blood sugar, I know this, the post-school dental appointment deprived him of the afterschool, snack, meal, snack ritual. But my boy has a flair for the dramatic, so it was the worst day of his life, then the worst year, January, November, and October were the worst year of his life and he was so hungry, he could never eat again. Finally I persuaded him to have a smoothie, "but NO paper umbrella." So he took and hid my paper umbrella stash and that made him feel better and as soon as he drank, his blood sugar rose and there was finally peace in the kingdom. I can't wait to go to sleep and start a new day tomorrow, some days can't be rescued and this was one of them.

Purged

I can't believe that yesterday was only yesterday, it feels a world away. I muddled through the evening, not getting out of the hospital until 4p.m., but when I took J to bed all hell broke loose. I had to kick the poor kid out of the bathroom to make room for me, and ultimately shouted, "get me a trash bag from the kitchen, quick". Just in the nick of time the plastic bag flew in the door and between heaves I shouted, "Griffin, call your dad, tell him to come pick you guys up." But his dad's phone wasn't working, he'd answer but not hear anything, so J got my phone and from my bathroom office I tried calling. I hoped that seeing all the caller IDs from us would translate to S.O.S. and it mercifully did. He came and got them and after about an hour in my new office, I climbed into bed. Had a good nights sleep and feel better today than I have in ages.

The chemo I had yesterday isn't supposed to make you sick, so maybe it wasn't that. My stomach had been hurting all week and maybe my body just wisely decided it was time for a purge. Out with the toxins, in with the new. So I'm cleansed and I feel worlds better. Got a fair bit done today and am now lounging in bed typing this with J playing on my iPad with his head on my shoulder. Poor little dude was kind of shaken up last night, but he continues to be amazingly resilient, I think we all do. Yay for us.

Manifest Destiny

You would think I could make an 11:40 chemo appointment with no problem. Sadly, no, not when you keep falling asleep and falling asleep and the clock doesn’t stand still like you’ve convinced yourself it’s going to. I drove here today because I wanted my laptop with me which felt like it weighed 80 lbs. while I was toting it home last week. Warning boys and girls, writing can be addictive. It’s a beautiful warm day, but I know that it’s always freezing in the chemo bay, so I didn’t want to lug a coat with me too, while walking. I don’t know why I call it the chemo “bay”, maybe it reminds me of sick bay on the Enterprise, or the starship of your choice.

I was running a few minutes late, but I really wanted to stop at my local spot and get a berry muffin and ginger tea. I’ll be here for hours and I can’t eat the crackers they offer, chemo robs you of your saliva. I don’t know how I became a punctuality nazi, but I’m always on time or early and I was having heart palpitations over being five minutes late which is insane. They’re never running on time here, but I imagine everyone dropping everything at 11:41 and declaring Kim Clark is late, her appointment is cancelled and we’re putting a red flag in her file. In the real world, it’s 12:18 and I’m still sitting here waiting for them. I don’t know why I stress over the dumbest things, gotta work on that.

I’ve asked the nurse to contact my doctor or any doctor to see if they’ll dose down the benadryl and steroids, I’m trying to be a better advocate for myself. Things are chaotic today, I’m not even in my usual wing, with usual nurses, apparently there was an emergency earlier which threw everything off. The level of chaos is a little unnerving. It’s strange being in a place that looks the same as I’m used to but isn’t... the fridge isn’t where it should be or the bathroom, on the upside, the little rooms are bigger and the chairs are all new. I had the same exact experience yesterday when Jonah and I went to see the Pirate movie from the {revered}, Aardman Studios of Wallace & Grommet fame. J doesn’t like to go to the movies, too big, too real, too loud, he prefers to wait for video, but he’s been counting down the days until this came out for months and of course, movie theater popcorn is an additional draw. We were so busy talking when we left, we exited the back of the theater instead of the front and just stood there, both of us, entirely perplexed. It looked like the same parking lot, the same, but different. We turned in circles for a few minutes until we figured out what we’d done, but for a moment it was like we’d arrived in a parallel universe.

Agh, back to real time, the nurse has accessed my port, but can’t get a blood draw. Ewww, I shouldn’t have looked, I’m very good at not looking, but it was taking so long. Maybe now that I know how much a bag of blood costs on the open market, mine doesn’t want to leave my body for fear of needing to be replaced.

O,K., phew, that’s done, but it’s 1:00 and I’m still not hooked up to my drugs. Definitely not making it to the bus stop, and grateful to the nearby family{s} that will take J home with them. G has a baseball game today and I haven’t been to a single one. I feel bad about that, I missed his whole basketball season and now baseball too, I need to get to a game, I’m used to going to all of his games. Weekly chemo seems oppressively often.

I’ve been pondering this cancer thing and realized that I don’t know how to refer to myself. I have cancer, I had cancer, I don’t know which and I’m starting to think I won’t ever know and that’s unsettling. I’ve done chemo and the whole tumor and then some was removed and so possibly I’m cancer free at this very moment. This chemo may be an insurance policy to make sure, to track down and zap and stray cells floating in my bloodstream looking to set up an outpost. The wanderers, the adventurers, the just plain dumb and lost and wandered off from the pack. I suppose the difference between having cancer and being recovered from cancer, will at some point be nothing more than a choice in perspective. I don’t like that, I like empirical evidence, data, I want a declaration of certainty, a certificate, but you don’t always get what you want which is too damned bad and you have to learn to adjust.

Enunciate

Say what you will about my boys, but they enunciate! Griffin barely spoke until he was three and then it was in clear, crisp sentences. Jonah, for a a scrawny little thing has always had a deep beautiful, resonating voice and put him on stage and there is no mumbling, no fumbling. I loved watching improv class this week. I've always been insecure about my voice, self-conscious and I wind up with these two, so beautiful to listen to.

Week one almost down, eleven to go, that number is intimidating. I felt lousy all week, very tired, misc. ailments, but I was semi functional. I left the house every day at least for a little bit. This time, last protocol, I was flat out in bed, I didn't leave the house for weeks at a time, so that's an improvement. They're giving me steroids with the chemo drugs and those don't agree with me one bit. Sometimes I just can't stop bouncing my legs or rubbing my hands together and dead tired as I am I can't sleep. When I do sleep I have nightmares, those real feeling dreams that leave you confused about what is and what isn't. I feel like I could use a really good nights sleep, not just more time in bed.

I'm taking a leap of faith and having my rep. show my work at the upcoming stationary show in NYC. It's a good fit for me, I think and I'm tired of passing up opportunities at the same time, afraid I won't be able to follow through. I lost my biggest account that I'd had such high hopes for and that scares me, I need at least a shred of momentum or I'm going to start panicking. Between now and then, it sets me up with quite a few projects which I don't know if I'll get done, but I'm scared of having nothing on the horizon. I've put so much work into my little biz and I don't know what I'd do if it fizzles away while I'm sleeping. I wasn't very employable five years ago and even less so now and my small savings aren't going to last forever especially when my insurance isn't covering "blood products" and who knows what else. I don't know if it's good or bad, putting renewed pressure on myself to be working, but I'm giving it a shot. Maybe the adrenaline rush of some new accounts will make me feel less dreary... I keep thinking the warmer weather will cure my malaise, but it will probably just make me sweat.

Plans

I had plans for this part of my life, it's reasonable to have plans at 48. 48 Sounds so young when I see it typed out and before this, I was feeling old, silly me, 48 isn't old and this wasn't the plan.

Nine Key

Not a bad day. Slept until nine, which I've spelled out because my nine key isn't working. Beloved laptop on last legs, owner in denial, just like with the vehicle. I managed to pack a small order at the studio, pick up child with toothache at school, take 3 hour nap, and order a pizza for dinner. As I was brushing my teeth tonight, I noticed my face is bright red and now since I've seen it, I can feel it. Hope that's nothing bad.

What seems most affected is my brain. Very scrambled in the head I am. I don't remember yesterday. Bits and pieces, but not what anyone ate for dinner, or putting Jonah to bed, I think he slept with me, but I'm not sure. Don't really remember the whole afternoon and I keep saying things backwards and jumbled up. There were lots of dishes in the sink and leftover smoothies in the fridge, both green and kid-friendly fruit, so I must have had an energy burst and made them, but I have no recall. Even today seems a bit of a blur and about a week long. Last night I tossed and turned all night, but tonight I think I will sleep, I'm just that tired.

Bouncy Balls

Last night I told the boys, that if I was feeling o.k. this Saturday we should go to Friday Night Live. They thought that was funny, so yeah, I guess my brain is a little scrambled. Scrambled like egg.

Aside from scrambled brain and some wooziness I feel fine today. Yesterday had it's moments, but all seems well. This new cocktail is accompanied by simultaneous Benedryl and steroids to ward off too common allergic reactions. They don't explain this stuff to you, they tell you about the main drugs, but not the supplementary drugs they're dripping in too. I am a girl who can't handle her Benedryl, I stopped taking it years ago, it wipes me out for days and causes depression. It's unlike me to be aware enough to make causal correlations, but the benedryl/depression thing became obvious and then I looked it up and it's not uncommon. A lot of moms with young babies, myself included, occasionally give baby-sized doses of Benedryl to our kids when they simply will not be soothed into sleep, and we are desperate. I wonder if all those little babies were depressed the next day.

An hour after lodging myself comfortable in the chemo chair I was nodding off despite how damned cold it always is in there. And then the steroids kicked in so I'm half asleep and bouncing around at the same time, my legs and feet couldn't stop, most literally. On the inside I felt like everything contained within my outer dermis had turned into super-charged, brightly colored, striped and polka-dotted, super balls bouncing frantically in every direction. Luckily it eventually passed and today I have only minor jitters and I hope things stay calm. Still, not happy about the Benedryl and steroids.

Otherwise I really do feel fine, I'm used to the dry mouth and hot on the outside, cold on the inside, tossing and turning all night long, but thus far, I feel quite manageable. I might just get to Friday Night Live on Friday. I'm going to shower and attempt some errands, this was not possible on day #2 of last cycle. Fingers are crossed.