Tuesday, July 31, 2012

Running in Place

I'm running in place, running in place, getting no closer to my destination. Seven hours in the fish tank today, but no chemo, my lab results were all too messed up. Hemoglobin low, white blood cells, those happy little infection fighters almost non-existent {despite those pricey daily shots}, one level after another gone haywire. No surprise after how I've been feeling. So instead of my second to last dose, I spent the day rehydrating {again} and getting blood transfusion #5.

I was disappointed at first, but now I'm relieved by the thought of feeling better and having a good week. A much needed good week. I'm sitting on the porch gulping in the fresh air after a long day in the chair and the stale hospital air.

There was a dormant squirrel nest in the birch tree right in front of me, but a couple of weeks ago it was  claimed and redecorated by a new squirrel who spent the evening hopping from branch to branch, nipping off the fresh green leaves at the end of each to pad the inside of the nest with. I'm calling him little buddy and he's in there right now, I just saw him climb in. Him or her, I don't know, I'm hoping there will be squirrel babies up there, I've never seen a squirrel baby, they must not come out of the nest until they're pretty big.

Since I'm running in place and not going anywhere at least they can keep me company.

Monday, July 30, 2012


A few weeks ago, I was feeling giddy about the approaching end of chemo. I envisioned myself blazing through the finish line, celebrating with friends and champagne, having a party, and now I feel like I'll be lucky to stumble over the line face down in the dirt.

I've been so relentlessly sick to my stomach since getting home from the hospital yesterday that I'm already dehydrated again. Monday is usually my most functional day of the week and I'd hoped to get into the studio a little bit, but no such luck.

Tomorrow they can rehydrate me along with the chemo drip, but any more piling on is a daunting thought.

I've been car shopping on-line and I'm shocked to learn that Kia's are the price of Toyota's and Suburu's are the price of Hyundai's. I wouldn't have guessed that at all, show's how prepared I am for buying a car.

The news from my porch is spectacular spider webs. Amazing. One has a fly all wrapped up and ready to eat which I believe will be soon as the spider is guarding it tenaciously. Not sure what we're having for dinner but definitely not flies and anyway, spider doesn't have enough to share.

Sunday, July 29, 2012

Bang & Wimper

Shucks, didn't make it until Tuesday. I laid low all day yesterday, rested, and got a lot of sleep. I thought this would be a much better day, so I set about making the promised breakfast-of-happiness for the guys. The bacon was in the oven, but as I whisked the pancake mix, I got out of breath and couldn't regroup. I stood by the open window, leaned on the counter, tried to breathe, but I couldn't. Waves of heat and dizziness and I laid myself down on the kitchen floor. My kitchen floor is not a place you want to lay down, or maybe even walk without shoes.

I finally got myself up and stumbled out to the porch to collapse. I called G out and asked him to turn off the frying pan and the oven, but instead, he made breakfast while I was heaving for breathe out on the porch, head between my knees. He served his scared looking brother a beautiful stack of burnt pancakes which J ate and said were really good and then he made himself a stack of burnt pancakes as I yelled out tips on pancake making from outside. He got the bacon out of the oven and lived to tell the tale. He's been a big help since he got back from camp and just a pleasure to be with.

My next door neighbor who's been my trusty emergency transport brought me to the hospital where I continued to gasp for breathe so they whisked me right in. Turns out I didn't need a transfusion, but was dehydrated and way low on Potassium which I now know is called Hypokalemia. Go figure... Potassium problems.

I'm home now, the kid's are at their father's and despite being pumped full of fluids and Potassium, I still don't feel very well. I think my adventures with chemo are going to go out with a bang instead of a whimper

Saturday, July 28, 2012

Her Royal Grumpypants

Call it cumulative, but I'm done in. I'm so wrecked I considered going to the E.R. for a transfusion today, but such an ordeal, I'm trying to hold out until my regular appointment on Tuesday. I feel badly because I'm just sitting around with the kids this weekend and I feel like it's been so long since we went anywhere and did anything. Can't remember the last time I invited people over. Thought it would be a fun summer of backyard gatherings, they're not so much work, but nothing.

I was supposed to go to the Newport Folk Festival tomorrow, another thing to miss. The disconcerting part is not remembering what it's like to have the energy to live life. I'm constantly watching the clock to see if it's bedtime yet.

We watched the Olympic opening ceremonies last night and gotta say, I didn't get it. Kids in beds? Dancing doctors? Texting musicals, something about a lost phone? And all great reviews today. I thought it was deadly and just plain odd, and not in the good way. I was hoping to read some fun, scathing reviews today, but I guess I'm in the minority here. And the Teletubby hill was so shabby, they could've grown some better grass than that. And the queen, yikes, what a grump. U.S.A.'s uniforms, boring! What's with the berets? Looked so military, but I suppose that's fitting.

Thursday, July 26, 2012


Never celebrate too soon. I had my chemo crash yesterday afternoon and thought all I needed was a good nights sleep, but today I'm sick as a dog, sicker than I've been in quite a while. I finally know to be patient, that it will pass, but it's no fun and I'm just plain sick of being sick. Remarkable how quickly your mood can go from jubilant to despair {and back again}.

My brain is now operating independently from the rest of me, it just does what it wants with no rhyme or reason. It didn't pay my phone bill and then scheduled a payment for some wacky date way down the road, so don't call. It was, however, feeling generous towards my credit card and cable companies because they got payed twice, so that's where my bank balance went.

I'm told it takes a full year for all the chemo to get out of your body. That is a stunningly long time. Who comes and stays for a year?

Tuesday, July 24, 2012

Homestretch, Batman & Martial Law

I'm {sadly} neither shocked or surprised about the movie theater shooting in Colorado. We are raising a nation of disaffected, desensitized, youth with few options in a crazy, chaotic violence-obsessed society with easy access to {mail order?} weapons. And not just guns, over the top guns, insane guns, assault weapons that can shoot god knows how many people at once. Mental illness is rampant and treatment access is difficult and likely unaffordable for those who need it most.

What shocks me, and maybe it shouldn't because someone has to grow up to be the next psychopath is the number of babies and small children I'm hearing about being at this movie. Batman is loud and dark and grim and uber violent, can you imagine what that environment would do to tender, fledgling baby ears? A movie like that would traumatize any normal toddler or young child, and fan the flames of ones that really shouldn't be there, I think PG-13 is even a bit liberal. A midnight show no less. I'm just appalled that people do this, I just can't comprehend, it doesn't compute. One time I went to see an adult-themed movie with Meryl Streep as a psychiatrist who's patient takes up with her son, can't remember the name. There was graphic conversation throughout, lot's of "vagina", "fucking" a menagerie of words and visuals that were inappropriate and likely quite uncomfortable for the several kids under 10 present. I was just as uncomfortable watching in front of them. I just don't understand people's judgement, so conservative and judgmental on so many issues, and yet so free and easy with the violence, so damned protective of it. Our culture is a mystery to me.

I had my last Taxol + Carboplatin today, hooray. Carbo is the one that's really been giving me trouble and I'm now done with that at least. Two more weeks of Taxol, then a minor surgery to remove my port.  Thrilled about that because I never made peace with the port, I've hated it every single day since it went in last November. I'm really getting excited about my last day of chemo, {homestretch, homestretch} and really, I don't think my body can take much more... four blood transfusions in three months, these shots every day, the dysfunctional brain getting worse by the minute. Yesterday, I had to drive about an hour home from somewhere and I was so tired I had to use cruise control for the first time ever, because I literally couldn't keep pushing on the gas pedal, that is fatigue!

I'm happy also to report that there is peace in my kingdom. There is reading on the couch, conversation, siblings interacting at least a little, laughter and quiet... occasional beautiful quiet. Let's hear it for martial law and the proverbial last straw.

Monday, July 23, 2012


I've been wanting to go swimming, well, not swimming, but floating. It just seems like it would feel so good to just float in a pool, not feel my body, my achy joints, my stingy feet, my protruding port, my tight, restricting incision, I've been thinking about pools a lot. Sunday afternoon, I was exhausted from Saturday, but I decided to go see some friends at the pool they belong to. I almost didn't, but I realized, I'm just home, way too much. I went a bit late in the day, so it was a little chilly there, but the water was warm. I couldn't bring myself to dive in, I felt too breakable, too intimidated. Finally, I just jumped in the deep end and pushed up when my feet hit the bottom. It felt great, so I just bounced up and down for a while and then I floated on my back, I wish the pool was deeper. I had to float my way to the other end of the pool to get out and I was crazy exhausted from that tiny effort.

I'm finding myself wobbly lately, teetering, grabbing on to things so as not to fall. Can't fall, because I don't heal up any more. My super-healer days are a thing of the past. I loose my train of thought mid-sentence and it never comes back. I had to drive an hour away today and on the way home I used cruise control for the first time in my life because it was too much effort to keep my foot on the gas pedal. I don't know how you get back into shape after you're this far gone. Slowly, I suppose.

Tomorrow is my last double chemo -- taxol and carboplatin and I can't wait to have it in my rear view mirror. I'm getting so excited about being done with chemo, and it's nudging past grueling right about now. Doable only because the end is in sight.

Sunday, July 22, 2012

Divine Providence in Somerville

Aside from dragging myself out of bed at 6:45 a.m., my day in Somerville was super-duper. It was so busy the time flew by, I love spending time with my tent-mate and my sales were great. When I'm in Somerville people see me and don't think cancer, they think, punky chic which is kinda funny, because those days are pretty far behind me. I had a lot of customers that always come see me at ArtBeat and some asked why they haven't seen me at any other shows lately and I said that this is my only show this year because I've been sick and they say, well you look great, glad you're all better.

This is also my weekend of thoroughly bad health habits. I started at Starbucks and learned that there is now a size larger than Venti. I don't know what it is because it's written too small on the menu board for old folks like me, even with their glasses on to read. So I ordered my usual, "I'd like the largest iced tea humanly possible, please," and this time, it really was, ain't no cup outside 7-eleven bigger than that. With regrets, I stand by my belief that Starbuck's Iced Tea is the best anywhere. I also got an old-fashioned donut, a particular fave, but could only eat half, the iced tea, I had no problem with. A BBQ brisket sandwich for lunch, half a diet coke and and unbelievably decadent dinner with friends afterwards, can you say, feta stuffed fig wrapped in bacon? Got home at 10p.m. thoroughly exhausted {still am} and exhilarated.

Near the end of the day there was a moment of, I think, divine providence. A man and his family bought something from me, I don't remember what and nor does it matter. He later came back and asked me if I could do a custom project... definitely. We got to chatting and I don't remember why or how it came up but he said he was a cancer researcher at Mass General Hospital. I said "what a coincidence, I have cancer." He said, "oh really?" because again, we're in Somerville, so I'm just a wacky bald-headed punky chic. He was interested, he asked what kind... I told him along with my frustration about the laissez faire follow-up care that's been described to me... that basically I've been told, wait and see and if you have a recurrence within five years, it will be lethal and there's nothing we can do. He told me I really needed to come to MGH, that's not the approach they take, they are aggressive. The head of their oncology dept. is a guy who specializes in TNBC {Triple Neg. Breast Cancer} and cutting edge research related to it. He gave me both their names, google him he said. And damned if he wasn't dead on... this is the guy. This is the guy that gives the talks at the conferences that my doctors {hopefully} go to. He told me to email him and that he would personally set up an appointment for me and that he'd also show me around his lab, cool! After he left, he came back again and said, I'm really serious, get in touch. I've already emailed him. On my own, I'd never get a consult with this guy. He also said something in a way that I've been waiting for someone in medicine to say for a really long time. He said "look, there are statistics, but that's only part of the equation, there's attitude and outlook and what patients do for themselves that can make a huge difference. He said it with heart, and belief and that's what I've been searching for. I told him so and said I just don't see myself as tragic, I just can't accept that as my destiny, so I'm all in for doing whatever I need to do. I really hope he gets in touch, but just like the guy who hit my car and didn't take off on the way to the service station, I think this man will be in touch.

Got my shot today, since I missed yesterday. Looking forward to tomorrow and then Tuesday is my last double chemo, so I'll be back on the couch for the rest of the week.

Wednesday, July 18, 2012

Price Fixing

I’m experimenting with not going back to bed after I deliver boy to camp in the morning, we’ll see how long that lasts. I was excited about today because I had long standing lunch plans and I rarely plan in advance because I never know how I’ll be feeling, but I knew this would be the hungry day in my chemo cycle, so I made plans. After last weekend, after this whole fucking year, I decided that today was just gonna be a good solid ME day. Usually when I have energy, I go grocery shopping and do the laundry, screw that!

Before my ride came I drove over to the hospital to get my shot where the nurses dropped a bomb. I can’t just pop in anymore, I have to come at my random appointment time, different time every day, who can keep track of that? I wonder if I’ve pissed them off too somehow. This really bums me out, I don’t even write down the appointments and even if I did, I’d still mix them up or forget to go. Now I have to go tomorrow at 9:20, next day at 11:40, some appts. are in the afternoon and conflict with camp pick up, I’ve got to seriously sweet talk those ladies tomorrow because this just isn’t going to work for me.

As I was walking back to my car I heard a horrible scraping sound and when I got there it looked like it was attached to another car, having horrible grinding metal car sex. After the other car extracted itself, the only damage was my side view mirror got knocked off, any scratches and scrapes just blended in with the rest so who cares. The frisky car was driven by a sweet old man who seemed really relieved I wasn’t pitching a fit and as he fumbled to find his papers I asked if he wanted to do the insurance thing or just follow me a few blocks to the service station and pay for it. He seemed really happy to take that route and as we drove over I realized that I’d not even looked at his license plate and he could drive away at any time, except that I was sure that he wouldn’t, and he didn’t.

We sat for a bit in the nice air conditioned waiting room of the garage and made small talk and he sort of gestured towards my head and said, most sincerely “I hope that’s a fashion statement” and I said “no, afraid not, that hospital is my home away from home, that’s why I was parked there.” He said he was really sorry and told me about some long term cancer survivors in his family. The guys at the garage couldn’t write up the bill for him until they got the serial number of the new part, blah, blah, blah, waiting for call backs from the supplier, the warehouse, it was taking a while and I wanted to get back to my good day, and the part would take a few days to come in, so I left him there to wait for the bill and pay and realized again that he could just get up and leave, I’m assuming he didn’t and I really have no doubt. As I left I thanked him for his integrity in taking care of this so graciously.

Twice now, while preoccupied, I’ve backed out of my driveway, straight on into cars parked opposite that are completely in your blind spot if you don’t notice them when you’re getting in your car. Car’s never park opposite my driveway, the street’s too narrow, so no one does it unless there are extenuating circumstances which both times there were. One time I took out a Volvo, painful. Both times, there weren’t any witnesses and I could’ve gotten away with it but both times, I left notes and paid up. I’m glad I did, I could never live with the guilt, so maybe today was a bit of karma. It was good to just settle things so easily. We both knew it was his fault, but no need to be nasty. I was nice as all get out to him and he to me. Civility is a beautiful thing.

Off to lunch where yes indeed, I had lobster. Spicy pasta with lobster in Bristol and got a nice tour of the area from my friend who had family there growing up and knew the area well. What I want to know is that if there’s a glut of lobsters in Maine and they’re selling them off the boat for a buck and change a pound, why isn’t the price dropping in any of the restaurants? You would not believe the price of a tiny lobster roll. I’ve even been googling around for live lobsters and the prices per pound are outrageous. I want a federal investigation into lobster price fixing and price gouging, it’s clearly a vast right wing conspiracy, especially if the name of the villian named Bane in the new Batman movie who was, incidentally, introduced in a comic book in 1993, is a vast left wing conspiracy to defame Mittwitt and his Bain Capital which Rush Limbough is currently screetching about.

Had more to write, but I’m too sleepy, goodnight, sweet dreams all.

Tuesday, July 17, 2012

Three More Weeks

I’m in the fish tank waiting for my blood work to come back. I’m putting my money on low red because I’ve been out of breath and emotional all week. It seems nice and quiet here today and I could use some nice and quiet. I forgot my fuzzy socks today, it’s always freezing here and fuzzy fleecy socks are my comfort item, but at least they have blankets so my feet and I will survive. It’s extra cold today, I can overhear the nurses complaining about it too.

I had a stormy weekend and I’m finally feeling the calm that follows. I’m completely content in my recliner today, despite the tubes sticking out of me. My troubles involved a teenager that I love beyond description, a teenager making consecutive, poor decisions resulting in heaps of exhausting nonsense landing in my lap needing attention and action, along with a relentless series of, if it can go wrong, it will go wrong. I got so overwhelmed, so fraught and over my head that a friend, a spectacular friend, a friend who I wouldn’t be getting through this without, came over and calmly assessed the situation. She consequently, delivered small boy to her house to spend the day with her son {his best friend}, and drove three kids, none of which were hers, or mine, all the way back to camp. The entourage, included a sweet, scared boy from out of town with 103° fever {despite handfuls of advil}, and frayed emotions who needed either the camp infirmary or the emergency room which I didn’t have in me to take him to, it’s level of germitude too scary. My own son was off playing football for the day at some passing competition I only heard about the night before, and hence unreachable.

My boy came home to lots of serious talk and sadly more poor choices were made and I’m resolved that when he’s home from camp, there will be serious changes in our lives. I can’t keep taking the path of least resistance and blaming my inaction on fatigue. I keep thinking everything is copacetic because my teenager isn’t angsty and surly, he’s straightedge, boundary-oriented, smart and charming, but there are still long-standing issues and it’s time to get serious, I’ll be launching an adult into the world before I know it and there’s work to be done. Ain’t gonna be pretty.

Results are back, I was right about the reds, the trusty oxygen carriers, so it’s transfusion plus chemo today which will mean a really long day, and also only three weeks left.

At the end of my dreadful weekend, I had dinner with some folks who hadn’t contacted me since my diagnosis, despite having been good friends for almost two decades. I wasn’t mad because I knew going in, that’s how this would work. Some people disappear and others step up, but in this case for everyone that’s disappeared, five have emerged, so I’m making out really well. Lately they had reached out and so I was happy to go over for a visit. It was awkward, having to catch people up after so long when so much has happened, but I filled them in best I could and told them that for more detail, they could check out the blog if they wanted. I always feel weird doing that, it’s such a narcissistic thing, hey, read this thing I write all about myself because I’m the center of the universe, but besides the narcissism, it really is functional for the purpose of explaining the situation. One of the couple sounded kinda pissed or annoyed and said he just doesn’t read blogs, it’s not his thing and he did read a bit of mine early on and while he’ll admit it was well written, it was too damned depressing. He’d had a rough year too, very busy at work, and really, the last thing he’s going to do is spend his free time reading this really depressing blog. Ouch. Then she looks at me with a big smile and asks sincerely “so what would you do with your life if you only have five years to live?”

Paralyzed, frozen, horrified, eyes welling, but restrained, thank goodness. I managed to blurt out “I just can’t talk about that kind of thing, I can’t go there.” After an awkward silence I said something to the effect of “so how about that Mitt Romney, what do you think his chances are?”

At that moment, I just felt so depleted, exhausted, deflated, alone. In retrospect I’m still speechless, this was a smart women, does she not know that post-diagnosis trips around the world are for affluent couples in their eighties who are still in love. Travelling to tibet or renting a place in Italy for a year is fiction-fodder.

I have children, I’m most definitely not independently wealthy. If I have five years to live I’ll keep doing what people do. Raise my kids, pay bills, enjoy the simple things omni-present in life and do the best I can to get through the day, same thing most everyone else is doing, and hopefully not having weekends as sucky as this one.

I’m really looking forward to next weekend because I signed up for one and only one show this year, ArtBeat in Somerville because it’s always my best show of the year, and not by a little, ArtBeat rocks and I didn’t want to skip a year and risk losing my spot, plus I could use a wad of cash right about now. I love my spot, right near Johnny D’s with the air conditioned bathroom which comes in quite handy on the usually sweltering day. I offered half my space to a friend in exchange for her bringing the tent, tables, weights, everything, and she’s so swell, she’s bringing me too! I’m so looking forward to seeing some of my crafty friends, many of which have been so kind and supportive during this period and who are people I just plain like an awful lot, and don’t see often anymore. Definitely bringing a chair!

So here’s to next weekend and the one after that and the one after that.

Thursday, July 12, 2012

Nine Times a Day

I was laying in bed yesterday morning when I suddenly sat bolt upright and looked at the clock revealing 10:00. That was my brain kicking into gear for a change as I realized that I had a 10:00 appointment with the radiologist. Flew out of the house like a hurricane and got there at 10:10 just in time to keep my appointment. Again, I don't know how people in rural areas or even the burbs handle chronic illness. I am always within minutes of where I neet to go and still it seems life is consumed by appointments, adding in commutes would put me over the edge.

Radiologist who I liked very much explained that even with bilateral mastectomy there is a 10% chance of localized recurrence, which I found shocking. Aside from that there is evidence that radiation improves overall survival rates for reasons unknown. I can't pass up anything that improves my survival rate. No matter how many times I've heard it and how thoroughly I understand it, It's jarring every time I hear someone refer to my "high risk status". So radiation it is. I was under the erroneous impression that it would be every day for three months, but turns out it's for seven weeks, so at least that feels less daunting.

The current plan is four more weeks of chemo, a month to recover and then radiation. I want to get radiation done before it's really cold out because I know I'll be horribly sore by the end and restrictive clothing would not make me happy. I've been lucky to have been able to wear loose fitting tank tops since my surgery. Oh and I suppose sometime in there will be the small and much desired surgery to remove my port which I've never made peace with.

Tomorrow is Hawaiian day at camp. There are a lot of Hawaiian days in the lives of todays youth and my particular youth embraces it so much that I keep a bag of hawaiian garb hanging in his closet. Little boy says he's going full on Hawaiian. "How many Hawaiian shirts do I have?" "Two," "well I'm wearing them both... along with the orange grass skirt and many leis. It's a good thing the tall one is away, he'd be mortified.

Yesterday while leaving camp he told me that he had trouble walking when he was at camp. I was perplexed until he went on to explain that he was so happy at camp his feet couldn't stop skipping even when he tries, "camp makes me skippy." How many times a day does this boy save my life? One the drive home, he explained how hugs make your body make chemicals that make you happy {endorphins}, so it's important to hug at least nine times a day. That is fine by me!

Tuesday, July 10, 2012

Dreams and Dresses

Little dude has come into my room the past couple of nights upset and needing to sleep with me. Which is strange after such happy days, and they are happy days, he loves camp more than I can say and his afternoons are peaceful and happy. But after only a few minutes trying to get to sleep he comes into my room almost in tears. Last night saying “whenever I close my eyes I think I’m going to fall asleep and wake up somewhere else and not know where I am.” I wonder if this is his deep down inside unspoken, unknowing fear that I will die and that everything will change and he won’t know where he is. More than you should worry about at 11, more than you should worry about when you have the biggest, sweetest, tender heart. I can’t even think about what their lives will be like should that happen, cause yeah, things will change and there’s nothing I can do about it. I let my mind go there a few times, too many times and it was so painful and gut wrenching I had to stop, and now I consciously disallow myself from going there, those thoughts are banished to the forgidden forest. Not because I’m in denial but because there’s no point going somewhere until you really have to. His fear, my fear, is so unbearable that tomorrow, they may indeed talk me into radiation, because I have to do everything possible.

While there’s nothing sweeter or more endearing than his sleepy head on my shoulder it’s its’ own kind of torture because that kid is a small nuclear power plant and night brings me relentless hot flashes in weather already hot, air already stiff. Having hot flesh pressed against me, no matter how beloved is difficult, so I don’t sleep well. I’ve had to crank up the A.C. and then I wake up cold because he’s a notorious and unrepentant blanket thief.

Last night I had a dream I’ve had before where I’m getting ready to go to a fancy party and I have a whole closet full of amazing, tailored for cleavage, vintage dresses. Spectacular dresses. I try them on one after another and they are gorgeous and fit perfectly except that I have nothing to fill the top part with, no outstanding cleavage, nothing, and hence I have nothing to wear and I'm really sad. Don’t have to go to far to analyze that.

Since my surgery I find myself oggling women’s breasts, not in a sexual way at all, but with a sense of awe and appreciation. I constantly find myself thinking “wow, those are so beautiful.” At times I want to reach out and touch them, put my face against them, which is something I’ve never, ever, even remotely desired before. It’s as if I knew I was losing something that brought comfort to others, but I never realized that in some weird way, they brought comfort to me. It’s kind of bizarro and really, really unexpected. But don't worry, I'm controlling these urges.

I wrote this post today while sitting in the chemo chair. I was so sleepy afterwards I called a nearby friend to pick me up, she was there quick-time and I went right to bed. Another friend picked up J at camp and brought him home at six. It was tough getting up, but now I feel fine, just fine. While making dinner I completely forgot it had been a chemo day. Maybe I needed to give in to that nap all along, I must say it was heavenly, the deepest sleep I can recall in some time and yeah, I needed to get the heck away from the car. The effects of the double chemo are lightening up and with just taxol and shots this week, I think it's going to be a good week and may the four week countdown begin.

Monday, July 9, 2012

Fifty Bucks

It's been a busy week and I figure if I don't post now, I never will. I'm sitting on the porch-of-heaven just a tad past dusk. My across the street neighbor and I call my porch our summer house. How I love this porch.

The tall one who I'm now calling "super-size" because I swear, he looks taller, came home from camp over night and a second x-ray and opinion said no breaks and he could get off the crutches and take it slow with an elastic ankle brace -- may the basketball court not be too tempting.

He was at his dads for the weekend, but I took him to dinner Saturday night, he said he was craving fish and chips and as that's a new food in a very limited repertoire, fried as it may be, I was happy to oblige as fried fish could be the gateway fish to grilled fish, baked fish, broiled fish, maybe even a shrimp or scallop. It'd been a rough week for me with fatigue and with food, eating was a chore and I wasn't eating enough which makes me feel worse, but again, had the lobster craving. All of my nauseous pregnancies came with their own food cravings, oranges, ice cream, artichokes, chemo desires lobster of all odd things, lobster, pasta and lemon sorbet. I googled "best fish and chips in Providence" and came up with Carrie's in North Providence. While I believe lobster should be eaten outside, I was happy to make an exception, and was almost salivating by the time we got there. The fish and chips were reasonably priced as Carries is a neighborhood place, not a fancy restaurant. Their claim to fame, apparently, is lobster and their quirk is that they only serve 3-pound lobsters. Everyone in the place was eating these gigantic lobsters, there was no turning back and I ordered one even though there was no price on the menu, but as I was ordering I asked and almost fell out of my seat when they said $50. Yikes! Yet everyone in there was eating these $50 crustaceans, and these folks weren't the 1%, I guarantee you.

Fuck it, I ordered it. G asked if I'd ever ordered anything that cost that much before and I said I'd never ordered anything over $30 or all that close to that. Life is short, you only get one, and my god that lobster was good. I got the baked stuffed, and could only eat about 2/3 of the tail and some of the stuffing which had whole scallops in it, and took the rest home, so when I got hungry later I ate more lobster and the next day had even more for lunch. Cold, yummy lobster. No regrets, at least until the credit card bill comes and maybe not even then.

I had a lovely time with my son who is loving camp, thrilled to be off the crutches and while his father was supposed to drive him back, he asked if I would do it instead because there were some counselors he wanted me to meet. I hesitated due to lack of energy, but nothing could mean more to me than his request. Teenagers are supposed to be embarrassed of their parents, I sure was, and my kid's have just cause, bald-mama thing and all. We had a super nice drive down to camp and I got to meet and thank the nurses that took such good care of him and the CIT director says he's doing great. Camp is his idea of heaven and I'm glad he'll have such happy memories. I'm also glad I don't have to feed him or argue about laundry for two more weeks. Tomorrow I'm back to chemo, although just the one drug this time which won't be as bad. If all goes well and I don't miss another week, I'm doing the five week countdown at the end of which will surely be a happy dance. Day after tomorrow, I meet with the radiologist, I'm still hoping to avoid radiation.

Thursday, July 5, 2012

Frozen Lemonade

Due to all of my complications, I haven't had double chemo in a while and I forgot what it's like. Because of the accompanying steroids I'm a babbling lunatic for 24 hours and then I hit the wall like an egg and slide down it into a slimy pile of goo.

My hyper brain turns into wet toast and I'm befuddled and sleepy and don't want to eat anything. All winter long I said if it was just warm, I'd be able to handle things better... that turned out to be a false assumption.

When I think about it... I've been immuno-suppressed for the better part of nine months and I haven't gotten sick. So basically, I rock. This cancer thing must be a fluke, I'm going to go with that as my new theory. Crazy outlying fluke and not gonna happen again. I asked my doctor when I could celebrate. I figured I should wait five years until the clock on the uber-danger-zone was winding down, but he said "no, you celebrate when you're done with chemo and radiation." I feel like I'd be tempting fate and I'm feeling too tired to even think about celebrating, but life is short, maybe you have to celebrate when you get any damned excuse. Did you catch that radiation part? I thought I was getting out of that, but that's appearing less likely. I'm meeting with a radiologist next week, but she's already convinced my doctor I should do it. I do not want to do radiation. Three more months of every day, nooooooooooooo.

I've always had foot-in-mouth disease and now I have it on steroids. I've gotten two friends seriously mad at me over the past couple of weeks and they both had a point, good points, valid points, completely correct points. I shouldn't have said what I said, either it really wasn't what I meant or I crossed a boundary, and in this instance it was a boundary I was well aware of, but in my babbling idiot, hyped up state I did it. I feel awful about it, really truly, and I've apologized profusely. I wish I could internalize that once you do all you can do to set something right, the ball is out of your court and you've got to move on. My apologies were profuse, profound and sincere... that's all I can do, so I shouldn't feel bad about it for weeks and weeks, but that's what I do. I'm terrible when people are mad at me, I'm too sensitive and I dwell on it and I also think they'll never talk to me again because that's how I was raised. Family friends came and went suddenly, my father only speaks to one of his four kids and my mother only two out of the three, that ain't normal.

At the same time, I hope folks can understand that I'm mentally impaired, I am seriously on drugs. There's a lot that's out of my control, not just the numb feet and manic foot twitching, but the babbling, the over the top babbling and the sheer exhaustion that makes me crazy. Some of the brain issues really are the worst, today I was really proud of myself because I figured out in my head that 3 frozen lemonades at $1.75 each, equalled $5.25.

Wednesday, July 4, 2012

Just a Sprain

My friend V picked me up at chemo with fruit salad in hand, I heard the angels. Never seen anything more beautiful in my life because I was beginning my steroid-induced famish-frenzy. After she left, I was scouring my house for food... not much, but enough, and I passed out into a nap before eating my shoes or taking a bite out of the sofa.

Was sleeping peacefully when the phone woke me up... it was Camp Fuller, about to take Griffin to the hospital. No rest for the weary, an over used phrase, but true, true, true. Camp sounded like they had the situation well in hand, and they even suggested I stay put, they'd take care of it, so I did. He landed funny playing basketball and his ankle was very swollen, they thought he'd broken it, but mercifully, just a bad sprain.

As there was no football tackling involved, I was mostly worried they'd send him home. I need four weeks of camp, not one. Four weeks of no transporting, flipping $20 bills to, feeding, pestering, waiting up late till he gets home. Four weeks! Really, Eight would be nice, but I'm happy with four, four will do worlds of good, one is not acceptable.

He eventually called and sounded good, sounded chipper, he actually loves extra attention, so he'll be fine. So I popped a couple of Ambien and slept, slept, slept all night.

Little dude is getting dropped off soon and then it's the 4th of July for us. I can't wait to put a whole pack of sparklers in a jar or beer bottle and light them all at once. Mostly I can't wait to relax with friends and just have a normal, peaceful day... with lots of food, cause it takes days for those steroids to wear off.

Tuesday, July 3, 2012


Claudia Hope Clark
July 3, 1999 - July 3, 1999
beautiful girl
only daughter
black hair like me
long slender fingers like her blonde brothers
and our dimple on her chin
I held her only once
eyes closed
perfect in every way
porcelain doll
yet her eyes didn't open
just wouldn't open
reason undetermined
otherwise healthy, as she should be
13 years ago and feels like yesterday
always will
little girl haunts my thoughts
haunts my heart
for 13 years and however many
I have left

I miss you and think of you every day CHC
I may be the only one
but that's o.k., I'm the only one that knew you
and it was a privilege, however abridged.

Sunday, July 1, 2012

Done But Not Done

Heading down to the big top, I figured this would be our last year as the small one is aging out, but after the performance, I was no longer sad about that fact. I've loved taking my kids to the Big Apple Circus year after year, but after the founder and ringmaster retired a few years ago, it just hasn't been the same. Like everything else, it seems to be dumbed down. It used to be so lively, colorful and joyful with nonstop action, now replaced by narrative and singing, the worst screeching clown I've ever seen and, well, it just seemed lack luster. It was missing the exuberance it used to have in spades. Everything changes, maybe I'm just an old fogey that doesn't roll with the times. Of course when we got home, Jonah had the same criticism, too much talking and what was up with that annoying clown?

We had fun there and the best part for me was the cashier when I was paying for popcorn who said "you've got a great head!" When people act normally like that, unafraid, undisturbed, it means more than you could know. It's brave of them to do it and so spectacularly fearless and human. It makes me feel so much less freakish because I feel like people cut a wide swath around me, I'm starting to feel out of place in the non-cancer world. For every five neighbors that walk by my house and say "hi" and "how's it going?", there is one that used to say hi and now looks down or the other way, pace increased just a bit. Luckily the numbers are on my side, but after awhile it gets to you.

This week off from daily shots has been a little dangerous, because now that the relentless cycle is broken, I don't want to go back. I feel so done. Done like the day you quit your job impulsively or pack a suitcase and leave. But I'm not done, I can't get in the car and keep on driving. Done, but not done.