Sunday, January 19, 2014

Cabin Fever

I've always hated the cold. I'd scrunch up my shoulders until I realized I was giving myself a headache. I haven't worn a coat this winter because pulling my right arm back to put on a coat produces a jolt of such painful magnitude, it's just easier to just not do it. I've also put off the transition to pants, I'm wearing 3/4 length skirts, thick fuzzy knee socks and low cut Uggs. I'd love a taller pair of Uggs, but I can't afford them. Thus far, they're the only shoes I can wear aside from the adidas sports sandals and flip flops. I have a long wide, scarf I drape around me and gloves and I go outside and while I know it's cold, I don't really feel the cold. I feel it, but as if through a barrier. I don't scrunch up my shoulders, I don't shiver, I'm not miserable, I feel it, but I don't feel it. I'm desensitized.

I heat the first floor of my house with a gas fireplace, so when I go up to bed, as soon as I turn the corner up to the second floor I feel a blast of cold air. I used to use a space heater every night and still be unable to warm up. I'd get in bed with fleece pants and socks to warm up the freezing sheets before I braved them. Now I get into bed in a t-shirt. I feel the cold sheets, and at the same time I don't. I'm desensitized.

Maybe you can only have enough happen to your body before something shuts down. I was pretty beat up before I got cancer. High risk pregnancies, invasive fertility tests, late term amnio, constant probing and prodding doctor's appointments and emergency C-section, a terrible infection and then the year of cancer treatment. I think something has been severed, or turned off for my protection. Ultimately, I don't' know whether that's a good thing or bad.

I used to have an endless capacity for staying home and endless patience for the antics of my kids, truly, endless. I'm losing that as well. Little dude, my beloved, was home sick for almost two weeks, got back to school for a week or so, then it was the long holiday vacation, back to school for a week and a day, and home sick again for the rest of the week, and I am on my last nerve. I'm climbing the walls, I'm impatient with the antics, I just want the homework to get done and I'm not distracted or amused by the silly dances or the drama. I feel like I've been turned off the past few days, switch clicked, dial turned. Maybe it was the year, mostly at home that just utterly filled my quota for that sort of thing. Maybe it's that I have very few nights off to go out and no one to go out with when I do. Much of that is my own fault as I'm bad at making plans. Maybe I have a classic case of cabin fever. If I didn't have my upcoming trip to look forward to, I think I'd loose my mind. How did I go twenty years without a vacation and now barely five months since my trip to Mexico, I'm climbing the walls. I need to be at the beach, in the warm water, away from home and tasks and chores and clutter and care taking. I went from never doing anything for myself to counting the days until I get on a plane. Don't know if that's a good thing or a bad thing. I guess it just is what it is and I have to just go with it. Things change, we change.

Wednesday, January 15, 2014

Zen, Bill, and Emma Keller

Last weekend a woman approached me at my store to tell me how good I looked and how nice it was to see me on the mend. I have a lot of hair… last year, I didn't have a lot of hair. People with Lupus, M.S., Diabetes and {sadly} countless maladies, suffer in silence. Cancer patients, with their bald heads get to suffer out in the open, people often have no choice to bear witness, because our disease, or at least the treatment thereof, is so obvious. And then there are the bloggers {such as myself} who with their constantly posted links, inflict their disease on their Facebook friends and acquaintances, cancer spam. Some of us choose to wear a wig and suffer quietly, but I'm too cheap, too lazy, too sloppy and too itch-prone to have taken that route.

The woman who approached me said "you must have been so angry when you found out you had cancer," "not really, I told her." She then suggested that I must have felt like it was really unfair, "no", I hadn't considered that either. She made a few other suggestions of what she thought I must have felt but none of them fit the bill. I think she was a little disappointed by the time she left. I really, truly appreciated her concern, but we didn't bond. I am endless grateful to anyone who cares about my wellbeing, I continue to be touched deeply by so many.

The conversation got me to thinking, because bloody everything gets me to thinking, tiring, perpetual thinking. I wasn't angry, because who would I be angry at? I'm an atheist, so I can't be mad at god. No one gave me cancer, I didn't catch it from anyone, get it from anyone's negligence… I could have been diagnosed sooner, but that mostly annoyed me and well, gave me more stuff to think about. As for fairness, I know bad things happen, I'm not an idiot, I've heard of cancer and that some people get it and that no one knows {for the most part} who gets it and why. So why not me? Would it be more fair if someone else got it instead of me? Much of life is a crapshoot, I know that, and someone has to draw the short straw." Unfair is when someone accuses you of doing something you didn't do, something you would never do. Unfairness is when you get a bad grade just cause the teacher doesn't like you. I don't know what I felt. First a creeping awareness of, uh-oh, I think I have cancer and then terror, mostly terror.

I was about to congratulate myself on being so emotionally evolved, so zen, and then I realized, oh hell no, lot's of things get me really, really mad. Bill and Emma Keller make me mad. Bill Keller, privileged, elite, sanctimonious former editor of the New York Times. Bill's darling, fragile as a newborn ladybug, wife Emma, discovered a cancer blog on-line written by a 37-year old woman with metastatic, it's everywhere, stage 4, incurable breast cancer. This woman, Lisa Bonchek Adams, with whom I was previously unaware, publishes a blog and tweets frequently {very frequently, apparently}, and has a huge following which included, dear Emma. Emma was riveted by Lisa's story, even contacted her and initiating personal conversations. But then one day, Emma woke up and had nothing better to do than wonder about her obsession with Lisa's blog posts and tweets, and she came to the conclusion that reading Lisa's blog was like watching a car wreck, you know you should look away, but you can't. Instead of asking herself why she couldn't look away, or if she should look away, she got angry, and she got angry with stage four, mother of three young children, cancer patient Lisa Adams. And because Emma is connected and privileged, she wrote an editorial on the Guardian News Site. An editorial, so offensive and so lacking in journalistic integrity that it was taken down immediately. In the editorial, she quotes Lisa Adams, as if their private conversations were on the record interviews.

Big Bill Keller didn't like his poor wife treated this way, so he went on to pen his own editorial {sans reading the blog in question} which he had published in his alma mater, the New York Times. In his editorial, he questions Ms. Adam's right to avail herself of so many healthcare dollars when the end result, either way, is that she will die, it's only a matter of when. What's the point of putting off the inevitable? He questions the ethics of her decision to live as long as possible, to expect people to witness the brutal treatments she endures. He compares her to his father-in-law who had a "calm" death."His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America." say's Keller.

Oh us crazy cancer patients, being all frantic and such, not wanting to die way fucking too young while we have children to raise, we're so selfish.

One tiny difference, is that Bill's father-in-law was 89-years old, life lived, goal achieved, ripe old age, done. Lisa Adams is 37 and has 3 small kids and this asshat finds her quest for every last day, every moment of joy offensive? He views her pejoratively and does so on a national stage, like this woman doesn't have enough stress in her life?

Holy fuckwads. Please, please read this wonderful article at:;_ylt=A0geuqBS4dZSqSAAR8BXNyoA;_ylu=X3oDMTB0dGtta2d1BHNlYwNzYwRjb2xvA2FjMgR2dGlkA1ZJUDI4NF8x

Or just google Bill and Emma Keller Cancer, oy vey. Incomprehensible. Despicable. I have a different opinion than Bill and Emma about who is self-absorbed in this equation.

So yeah, things definitely make me mad, I want to smash every piece of crystal and china in Bill and Emma's penthouse.

Then there's the brain-dead woman, essentially, a dead woman being kept on "life" support because she is 14 weeks pregnant with a likely very impaired, non-viable fetus due to oxygen loss. She left explicit instructions that she did not ever want to be kept on life support, her husband desperately wants to honor that wish, and will have to bankrupt himself going to court to stop this travesty. And how much is this costing? How many women desperately in need of prenatal care could get it for the cost of keeping a dead woman hooked up to machines? And then there are republicans, the NRA and traffic jams on the GW… yeah, zen? me? Nope, don't think so!

Tuesday, January 7, 2014

Three Sisters

If I didn't know me so well, I'd worry I was a tad bipolar. I realize this, as my pendulum is swinging towards manic at the moment. But as I do know me so well, I know that I don't swing dangerously, or debilitatingly in either direction, but swing I do, I'm a swinger.

I wish I swung more on the gender attraction scale, there would be so many more options, oh well. I'll take manic, manic is fun, manic is productive, manic makes me feel more optimistic.

Indeed, I'm starting the new year with a lot of energy. Maybe it's from sleeping until noon for a week, or maybe it was just time. I'm motivated, I have a lot of ideas and I'm actually getting things done. I went to the gym yesterday as planned and while that was downright painful, I am in terrible shape. Weak, I'm a weakling, I have hope that can be remediated. When my trip south of the border rolls around in seven weeks I want to feel strong. Powerful. Indestructible. Now is the time.

I bought this house nine years ago from the estate of the three spinster sisters that had grown up and lived most of their lives here. I never met the youngest of them, but I'm told she was the glue that held the other two together. The two that outlived her, Ettie and Suzie were battling bitties, Ettie went into a nursing home and died a few months later and Suzie followed her shortly, in her ripe old late 90s. Her funeral illuminated one heck of a life, filled with travel and adventure. Back in the day, she wasn't content to just be a "girl", she was a trailblazer. She started one of the first female-owned business in Rhode Island, something to do with telephones. Her life was inspiring, her funeral was powerful and poignant, despite her having outlived most, who knew her well.

I wanted this house two doors down from where we lived because it sat on a precious double city lot giving us a deep, side yard which provided the opportunity to get the ball throwing one out of the street. I also coveted the extra long, flat driveway which was great for trikes and scooters and bouncing balls. I thought a basketball net would be the difference between after school t.v. and outdoor activity and I was right.

We moved to this street when Griffin was two and as the old ladies let the neighborhood kids use the driveway, I often sat on the sloped lawn while G ran around the driveway, or rode his tricycle and years later with Jonah. Sometimes I laid in the grass and looked at the sky while he played, I couldn't imagine someone else buying this house and no longer having that opportunity. Often I'd look up and see one of the ladies or both, watching happily out the window with the sound of game shows in the background. They couldn't get along with each other, but they were both happy to have neighborhood kids trespassing.

Suzie, once in hospital and realizing she wasn't coming home, wanted the house to go to someone from the neighborhood and approved of her two nieces selling it to me. After she died it took a year of negotiating as they just weren't ready to part with this sentimental part of their lives even though they both lived out of state. When finally they were ready to sell, we had the place appraised and I simply bought it for the appraised value without a realtor or it ever going on the market, we wouldn't have been able to afford it then as the price would have gone way up. The house was a bloody mess. Filthy wall-to-wall carpeting, three layers of wallpaper and paint in every room. A tiny, dilapidated kitchen leaking gas, truly, cluttered mess. But I knew it was a good deal, solid old house on a double lot doesn't lose value. We sold the little house two doors up for three times what we paid for it seven years earlier, so essentially bought the new house for considerably less, put the extra money into fixing it up and hence have a nice investment with equity on my hands. 

I was the caretaker of the house for the year the nieces were making up their minds and I'll admit to stripping paint and wallpaper before I owned the place, but I just believed in my gut it would work out. I could tell these women had integrity and weren't going to screw me over. They just wanted to get to know me because they couldn't bear to just sell the house to anyone, visiting the aunties was a large and cherished part of their childhoods. I understand that. My husband thought I was crazy and was not a big fan of the idea because he didn't like change, even if it's moving two doors down and getting a great deal. So the sweat equity was up to me. I pulled every nail holding down the carpeting, I lifted the stained, cracked kitchen linoleum, and looking back, it seems odd, that I had to hit up a friend to help me drag the carpet out. I often gave in to his lack of enthusiasm on things, but with this house, and having a second child after a bad loss, I was a dog with a bone, relentless… had to have. He still resents me for these two things but admits that in retrospect they were really good decisions for which he's glad. Can you say, just can't win? He gets the payoff without any of the sweat, both literal and figurative, and gets to resent me.

I digress, over that year and after being so moved by Suzie's funeral, I felt nostalgic about the house too, just like the nieces, I felt the need to honor them. And one of the ways I did this was by keeping some of their furniture including a large breakfront china cabinet in the living room. when I say large, I mean it, it's 7' tall and double wide and I paid the estate sale people good money for it without bargaining, I have no idea why, swept up in the moment I suppose. At the end of the day I realized that if I'd passed on it, they'd have likely given it to me for free, just to not have to move it, like the dining room buffet, but I paid an exorbitant amount for it and have regretted it ever since. I don't know why I obsess over this one piece of furniture the way I do, we've all had buyer's remorse. This piece is just not my style and it's in my living room… where I live and every day I've dwelled here I've grown to loathe it more and more. That's also tied up with it being more my husbands style than mine and him refusing to take any furniture with him when he moved out, choosing instead to take our savings and furnishing his apartment with all new everything. The guy has better cookware than I've ever had and he doesn't even cook. In my new year's energy burst, I finally listed the beast on craigslist for a painfully low amount which garnered no interest whatsoever and so I decided, out, I just want it out and so I've donated it to a local artist who paints and plays with, and resells old furniture. I don't know her well but I love her work and she has a deep and interesting life story, small parts of which I've gleaned from FaceBook over time. 

Yet, here I am again, obsessing about my stupid purchase seven years later. I don't know why I beat myself up this way. It's a new year and It's time to make this my home, my home, not our home. The beast is going to a good cause and I get a wall back and a fresh start. I'll buy a piece I like for the space, which I know I deserve, but feel so guilty about as I shouldn't spend scarce money on frivolous things. Truth be told, what I love more than anything is nice furniture, home goods are my weakness and I think the only purchased new thing in my house is the sofa which has seen way better days. Oh and the IKEA bookcase for which I also have buyers remorse. Most of the rest of the things in the house were also bought from the estate sale for a song, maybe not things I would choose out of a line up, but perfectly adequate an tolerable. Maybe once the beast is gone, I won't think about it anymore, it will stop taunting me. Ridiculous the little things that drive us crazy. It's a new year, so out with the old, in with the new.

Thursday, January 2, 2014

Blizzard Coming

I survived my first day without cookies. I've deputized my children to intervene if they see me with chocolate. I've taught them the pep talk and J says that if I need a cookie he'll give me a hug instead, please, oh please don't let this child grow up. Except, asking that is asking for trouble, so okay, he can grow up, he should grow up, but his inner love bug should never diminish.

Despite blizzard on the way, disappointed boys had to go to school this morning after sleeping in for two weeks. Everyone made it, but mid-day, I succumbed to the tall one's texted pleas for rescue. So few people showed up they were just sitting around and I do enjoy our occasional hookie-lunches, so I took him to the Modern Diner. We had a very nice lunch and as I pulled out my wallet, he said "for once… I've got it, I'm flush with holiday money." And that boy bought me lunch. Of course it only means he'll run out of money sooner and be asking me for cash which we laughed about, but hell yeah, it's the thought that counts.

We are still waiting to hear about our appeal for more financial aid from the dream school. It's such an absurd amount of money we're talking about, the expectation of paying one bill that's more than you make in a year. Healthcare and college, the costs are criminal, that and the dreamy Rhode Island yearly excise tax on cars. It's hard to know how to play it -- demanding, offended, begging, pleading... I hope I'm doing the right thing. Phrasing things correctly, copying the right people.

We just learned that the offensive coordinator who recruited him, who we both adore, is leaving for a new job as head coach at a Division II school which is great for him, but sad for us. I say "us" but it seems just sad for me, G takes it all in stride, I don't like change. Knowing this guy gave me a level of comfort with the program and who would be his role model, now I don't have a mental image. I felt I could text this guy or call him up if I needed to, I don't feel that way about someone I've never met. Maybe it's for the best, I should really be staying out of things.

I have worn the compression sleeve for only a few hours each day, that thing is so tight it hurts. I know I've got the right size, I was measured and am right in the midst of size medium, but after a few hours my arm aches and finally, before I even know what I'm doing, I'm pulling it off. I'm really hoping that detoxing and losing weight will help the swelling so I don't need to wear it.

The sleeve I bought is made by a company called Lymphedivas. It was founded by a feisty cancer patient who needed a sleeve and like me, couldn't deal with the institutional look adding insult to her injury. So she started this company which is now run by her parents, as she succumbed at 37 years old. That's why I have trouble with the term "survivor" because everyone's a survivor... until they're not, it's meaningless at best, disingenuous at worst.

My insurance is supposed to cover the sleeve, it's a medical device and an Rx. Except that it doesn't. Even though the Lymphediva is made to medical specifications, because it comes in colors and patterns insurance calls it a "fashion accessory", say what? Even though I bought it through a medical supply company they won't pay even though it turns out to be the same cost as a beige one and a more breathable fabric.

I don't mind paying out of pocket, I wish that company all the best.

Wednesday, January 1, 2014


It's a new year, wow. I can't believe that it's only been a year since I finished treatment even though I've segued right into even more treatment, albeit for the chemo side-effects, nonetheless, it's been a great year. I have a hard time believing that this time last year, I was just exiting the bald zone, and barely had the energy to climb a flight of stairs. I must have had very short, fuzzy hair, I really don't recall as I currently like a crazed poodle with my unpredictable, full head of curly hair that keeps threatening to revert to straightdom {boo, I love the curly hair}.  I have a full and busy life where I can't conceive of being sick.

Cancer is still a huge part of my life, in fact, this morning I kept my promise to my patient and kind Lymphedema PT and put on my compression sleeve for the first time. I told her over and over that I would do it after the holidays and since that is today, I've kept my word. It's uncomfortable and makes my arm feel strangely cold. The gauntlet or fingerless glove probably isn't going to cut it... I think my fingers are swelling, so at some point I may have to resort to the full on glove which only comes in beige, no likey. Plus, in a glove, I can't type, slip on a kitchen glove to do dishes, it's just going to be much more of a nuisance.

I'd advise anyone considering getting cancer to do it on their non primary side, live and learn. Lately, I've had trouble even holding pen. Not so good for a maker of things small and delicate. I'm trying to conjure other ways of making money, as while we remain thrilled to death about the tall one's acceptance to his dream college, their "need blind" policy, seems, off paper and in reality, more of a we're-blind-to-your-need policy.

I've also kept my promise to have more balance in my life, to not put working and caring for others above living, and thus have planned a trip to Playa Del Carmen in Mexico {with a day trip to Cozumel and jungle expedition} for which I gleefully leave in exactly seven weeks. I have mixed feelings about this... part of me feels like every penny should go to helping G pay for college, as if our appeal isn't met with more funds, his potential debt is looking enormous. At the same time, putting my kids and their wants and needs before my own for so long, combined with my acute awareness of mortality, makes me unable to put off certain things any longer. I have no problem not buying clothes or shoes or dining out much. No problem keeping life simple, my raggedy couch is fine and my house in adequate if not stellar condition... I dream of bathroom rehabs, but I know I'll never really do one, I can opt not to spend money on many, many discretionary items, but I just have to make up for a life without travel and adventure. I have to repeat the joy, unmitigated joy and relief of floating and diving in the warm, blue sea.

And a bathing suit and skin tight wetsuit looming in my future is the motivation I need to get in shape. At least now I know not to try it with a skirted tankini, not easy to stuff that inside a wet suit without looking like you're wearing an inner tube inside. I am now equiped with binkini bottom and sports bra, although honestly, I don't think I should have to wear a top. For the next seven weeks, studio time is going to turn into gym time and physical therapy time, it's just plain necessary. I keep reading and rereading how gaining weight after treatment is detrimental to ones odds and while I'm absolutely clear that I'm quite, absolutely not suicidal, I've allowed my addiction to sugar and desserts jeopardize my health, as well as my comfort and self esteem and there's just no more excuse for that. So a new year and impending trip are just what I need.

I hosted a lot over the holidays. Had friends and family over for Thanksgiving, Xmas Eve, and New Year's Eve. I cooked for the first time in almost two years, cooked, beyond the utilitarian. I enjoyed it, but both times made my tried and true favorites and they didn't turn out as they usually do. My pasta sauce and meatballs and my chicken with apricots and olives didn't come out the same or as good as the zillions of times I've made them before, and I'm mystified as to what I've forgotten or done differently.

I'm grateful to have people in my life to share holidays with, and really enjoyed both my boys throughout. I had early-bird guests last night, tall one went out after dinner to be the Designated Driver, and my boy beloved and I finished the night by watching a few episodes of Avatar, our favorite cartoon series which I gave to the whole family as a holiday gift. I suggested turning on the ball drop at 11:55 and he said, "nah, that's always really stupid, let's just keep watching our episode." And yeah, the ball dropping, or moving painfully slowly down a poll surrounded by idiots in Times Square, is pretty stupid, so we just stayed snuggled on the couch and eventually went to bed with lots of kisses and hugs. Truth be told, we're all traumatized for life by seeing post-stroke Dick Clark french kiss his aging porn-star looking wife several ball drops ago. Dick's wagging tongue in high definition was possibly the most horrible image etched in my mind, there's no turning back the new year's clock on that frozen moment in time.

I turned fifty right after Thanksgiving and after obsessing for months over how to mark the occasion... a huge summer lawn party, a dinner, this, that, something else... when it came down to it, I neglected to make any plans at all. I called a friend at the last minute and we went out for a really nice, relaxing dinner and a few nights later a couple of other friends took me out, there was a gorgeous surprise cake brought to the studio, and it was really all I needed, why do we make things so complicated? A friend of mine turned 50 a few weeks before me and she said she's going to celebrate all year, so that's what I'm doing... celebrating all year. In seven weeks, I'll be celebrating with the fishies, and I hope turtles in Mexico.

Griffin and my brother conspired to get me a gift certificate at a local dive shop which really touched me. G was so proud of himself for getting it done and as he gave it to me he smiled so genuinely and said "pink wetsuit mom... seriously" and nodded to me with sincerity and affection. J gave me what I asked for -- a card that said the 10 things he liked most about me, and he outdid himself. He couldn't have described me in a way I'd enjoy more and each item had a Jonah-doodle and J-doodles are priceless. If I wasn't so afraid of infection from my low blood counts, I'd get one of his smiling stick figures tattooed on my leg. I love this card so much I put it in a safe place, so I could take it to Staples and have a laminated, mounted copy made to hang by my bed which yeah, means I can't find it and it's driving me crazy. Out of the clear blue sky I got a package in the mail that contained a badass, pink dive knife from an unexpected friend, who said they saw it and couldn't resist and that spontaneous act of thoughtfulness meant the world to me, icing on the birthday cake. The knife straps to one's calf and I know damned well I'd sever my own leg trying to re-sheath it, so while I'm not sure I'm ready to use it, I love, love, love it and it's hanging in my kitchen to remind myself daily that I'm a badass.