Orangeypinealaide

Oh my god, I'm still shaving my armpits, it's exasperating every time I catch myself doing it. I’m just not myself these days because I’m driving a white, Chevy Malibu while Sparky’s in the shop. I miss my pretty blue baby so much I've disturbingly begun referring to her as Princess in my head and I’m scared I’m going to slip up in front of the boys who will never let me live that down. The Malibu is a mobile monument to bad design, tacky, cheap materials, and rampant beigeism, I can’t wait to return it.

Many doctor’s in my week, first I got a call from my hepatologist letting me know that my elevated liver function tests have finally left their plateau and gone down a little and she thinks that will be the beginning of a positive trend and she says these things in just the right, encouraging tone of voice. The day before, I had a blood draw done to check the liver enzymes and the cancer marker for my oncologist. Since I’ve decided that the elevated cancer marker has to be linked to the liver problems, I was scared to get the results. I decided to just bury my head in the sand and not call the onco for the results, afraid, very afraid, finally deciding to go the denial route. But then, shockingly, he deigned to call me, to say that his tests too, revealed the liver function going down, and the cancer marker going down a bit as well... not at normal yet, but went down by a decent amount. I couldn’t, however, get him to say anything along the lines of “that’s great, I agree, I think your screwy liver is affecting the cancer marker because that’s a common cause.” And it is, a common cause, that’s what I’ve read, but he was emotionless and said “well it’s certainly not a bad thing, and we’ll certainly know more after your next test in a month.” I really started to pester him like a child, “come on, tell me this is a good thing”... I don’t know why I can’t find a cheerleader doctor.

Which brings me to the T.V. show Parenthood. Not a show I’ve ever liked much, but I’ve been watching it this season, because the breast cancer storyline was too morbidly tantalizing. If I disliked this show before, I really dislike it now. Watching this perfect, gorgeous, fun, extended family on their Berkeley, California compound while no one seems to work much, is depressing because well, I don’t get to live there or be in the big perfect family. The depiction of Christina’s doctor just drives me over the ledge. First off, your surgeon, is not also your oncologist and no doctor anywhere, especially oncologists or surgeons, give out their home phone number to patients, I consider myself lucky if I get a call back from the office within a few days. Real cancer patients have to run back and forth between surgeons, oncologists, nurses, primary care physicians and other specialists who all seem to not speak with one another. No one owns your case, they do their part in a vacuum and the patient, in a haze has to somehow coordinate it all. And then comes the PET scan. Christina’s doctor insists she have a PET scan when she completes treatment to make sure she’s cancer free. I have begged every medical professional I’ve come in contact with for a PET scan for that very reason and the only thing they’re united in is their steadfast refusal. “We just don’t do those, they’re not helpful, studies show they don’t change anyone’s outcome.” So freaking what? they give you peace of mind for the moment... they let you live in denial until something pops up. So I don’t get one, but fictional Christina sure does and then a trip to Hawaii because chemo and rads doesn’t make her hyper sun-sensitive like us non-fictional people. Yeah, I could go on and on, but I'll skip the part about no one actually talking to each other or getting to know one another's names at chemo.

I’m working my way through the vast list of items I have to provide to Dana Farber before my consult in February. Records, reports, scans, films, parrafin blocks of god knows what, actual slides of biopsies and tumor samples, it’s overwhelming, many, many phone calls are involved. I’d be picking things up this week, but it’s too darned cold to do extra errands. I’m really curious what it will be like up there... how it will all compare to how things are set up at the facility I’ve been at and a very lovely friend has readily agreed to come up with me so I don’t just wander around the parking lot in circles and remember to ask questions.

If I wasn’t already in love with all things Obama, the girls and their grandma in their jewel-toned outfits would do it. I loved the inaugural speech, loved, loved, loved it and Michelle’s eyeroll was the most priceless, thing I’ve ever seen. And if that wasn’t enough, Hilary telling the Senators Dopey-pants what they could do with it was beautiful. That hearing beyond anything else I’ve seen was the sound of that oft mentioned glass ceiling shattering.

Today, the RI house is voting on gay marriage. We are the only New England state not to have it, and the tall one is on duty as a Page today, so he’ll get to be at the hearings. He’s worried that it will go really late and he won’t get home in time to review for his AP bio mid-term tomorrow. I told him if he gets home really late I’d write a note and let him stay home and take it on Monday. He’s actually been studying these days and I think it’s way cool he’s paging at the State House, and I want him to do well on his test. Maybe I make his life too easy, I probably do, but I can’t seem to help it.

I’ve started buying orange/pineapple juice instead of plain orange and J calls it Orangeypinealaide. Need I even offer commentary on that? Except to say, you’re going to have a good day when it starts with a little imp yelping, Yay, Orangeypinealaide. I wish my oncologist could do for me what Orangeypinalaide does.

Symmetry

I have regrown hair on all parts of my body, except, curiously, in my armpits. I could understand the absence of hair on the right side due to radiation, but what about the left? Is it our natural craving for symmetry? If so, I say, three cheers, I am a girl who likes symmetry. Nonetheless, every, and I mean, every, single, time, I shave my legs, I shave under my arms. Sometimes I shave both, sometimes I stop myself midway through, remembering that there’s no need. Our habits, our muscle memories are so deeply entrenched. Just so you know... the public hair was the first to go and the very last to return, I don’t know why, it’s perplexing.

Yesterday after my doctor’s appointment, I did what I realize I always do. I wrote, it was cathartic and then I felt exhausted and my brain, week old mashed potatoes. So I went home, climbed in bed, set alarm and pulled blankets over head. Got up two hours later thanks to alarm and went to middle school pick up, were it not for that I would have stayed in bed all day. And as soon as that chirpy, little love bug got in the car and started, well, chirping, I felt completely myself again, and quite thoroughly back in the present. I had a really nice afternoon/evening with the boys and today I feel fine. Yes, there’s a little, dark phantom following me, damn these stalkers, I can feel it, but it’s keeping it’s distance. I used to go to pieces for days, even weeks, but I really have gotten better about shaking it off, being in the present and waiting for whatever will be, to be. I’m not thinking the worst. I really think everything will be fine. Maybe I’m deluded, but regardless of what happens in a week or a month or a year, it seems entirely tragic, to miss a minute of what i have right this very minute. And in this minute, I feel healthy and alive and I have joy in my heart, so I’m not going to waste it.

Ghoul in the Shadows

The benefits of bilateral mastectomy are that you can do yoga positions that require lying on your stomach without spending five minutes arranging yourself so it’s comfortable. Short hair means no ponytail poking you in the back of the head when you lie on your back. No risk of smacking yourself on the chin with your own body part, you can jump up and down to your hearts' content. Downside is you don’t really have the energy to jump up and down.

Went to my routine 3 month check up with my oncologist this morning feeling great. They fixed the front doors to the building, so you can no longer go in through the exit door {my preferred route}. Same lovely ladies at check in, some new hairstyles, but all is as it was. I went to visit the nurses, my favorite is back from knee replacement surgery and looks ten years younger, pain can wear you down it seems. There was a new girl doing weight and blood pressure, I guess the sweet one I was used to has had her baby, some things change and and some things stay the same.

Feeling so swell, so optimistic and carefree, I was all ready to finally hear, “everything looks good... go and be happy... go live your beautiful life.” Instead, I got to hear that my CA 27.29 tumor marker has gone up. This is a notoriously unreliable test. Some doctors use it and some don’t, but with my love of data, I readily agreed to it. There is a higher chance something other than cancer has caused this elevation, and yet there it is, floating out there, following me around, like a ghoul for the next two weeks until I have it rechecked and then checked again two weeks after that. Will it go up even more, or will it go down, only the shadow knows. So when, I wonder, exactly when, can I go live my life unshrouded by fear? When will I get the all-clear for more than a few weeks? When can I have the opportunity to live unencumbered, unfettered by worry and panic? How do I go home and look into my baby’s great, blue eyes and pretend I’m not worried, that I had a great day. I’ve done it so many times before, you’d think it would get easier... it doesn’t.

Jolly Happy Very Merry

My boys returned this morning from their weekend at their dad’s. The big one is a wired, jolly, lunatic and the little one is a sweet, happy elf, although the wired lunacy seems to be infecting him and that’s fine by me. Happy house, festive house, that’s my cup of tea, soon to be a full house, as we have our annual xmas eve soiree. I’ve been enjoying every minute of every day. The past month has been a string of perfect moments, unexpected moments, blissful moments, and tired moments, but I’m able to do so much more than I could a few months ago. Business at the shop has been great, kicking last year’s ass by a mile, and I’m having a full spectrum holiday experience. Sometimes I have a moment of panic, thinking that I’m so happy because it’s going to be my last holiday, or my last healthy holiday and then I just squelch it. I refuse to have that be true, that is just not possible, this phase of life, this chapter is a beginning, not an end. If I could will Jonah into existence despite profoundly flunking the fertility tests, I can will myself into health and enduring remission.

My living room has been sans music for two years, since I let the exiting party take the stereo system and the Bose radio which was rightfully his, a gift to us both, but from his father, so certainly it was right that it go. The only part of the stereo system that was mine was the Pioneer receiver which amazingly I’ve had since my early teens {wish they still made things so well!}, so I just figured he should take the whole thing. The only realms in which I’m brand conscious, because I just believe they make superior products that are worth every penny are Apple and Bose. Sure, I could listen to a thousand sound systems and find something comparable, but nothing’s going to be better or more compact than a Bose, and who’s got the time? But damn, they are expensive and I couldn’t justify the purchase. I’m always pondering it and then backing down, but last week on my way to work, before I even realized what I was doing, I was on 95 north, en route to Wrentham, where I know there is a Bose store. I walked in and out in 10 minutes with a beautiful new Bose wave radio, no regrets, and a little bluetooth accessory from which is streaming full, rich, holiday music from my laptop. Oh heavenly sound, the difference between what comes out of the laptop and what comes from the Bose is profound. I’m in love with the thing, despite it’s temporary home due to my old outlets and the need for an adapter. I’m grateful to my bossy subconscious that just plain took over and bought me this excellent holiday gift. Thank you me.

Wishing everyone a most excellent, very merry, happy holidays and a fine and fabulous new year!

To Catch A Thief

I’m listening to the sound of little boy whistling bits of the Nutcracker while getting out his homework. Tall one at computer doing homework, tree lit and pretty, hum of gas fireplace keeping us warm. It’s been a good week, albeit an odd sleepy day. I’ve finally reached the point where I can wait for test results without anxiety, a switch has flipped. I saw the doctor I trust most, and she was baffled as to why my PCP ran a Ferritin test sans the tests that go with it. This one test alone, apparently is quite useless without the corresponding tests that give a more complete picture, additionally it doesn’t actually measure the iron content of my blood, it could just be residual wonkiness left over from chemo. This was explained to me, and it made sense at the time, although like most things, I can’t remember the details. She thinks my liver is stressed from spending a year trying to process so many vats of toxic sludge. So my levels are all out of whack and she thinks they’ll calm down. On the other hand they may not... and I may in fact be laden with heavy metals. Blood has been drawn and sent to myriad destinations, more will go on it’s way every month for the next few and we’ll see. I’m calm, I’m not placing frantic calls begging for results, when they call me, they call me, I’m not going looking for trouble. Nothing is interfering with my thus far, totally awesome, going way too fast, holiday season.

This eating thing has gotten so tricky that I just plain give up. If I have too much iron that means I shouldn’t eat meat, beans, spinach or foods with a lot of vitamin C {my beloved clementines}. My sugar is high, so I should avoid carbs and today I went for acupuncture and she told me not to eat raw fruits and vegetables because those are stressing my body, and as I don’t like cooked vegetables much, I like them cold and crunchy, that’s a problem. My liver is unhappy, so no alcohol, and after that, what is left? So I think I quit, I’m just going to eat what I want, trying to keep it within the confines of healthy and varied, unfortunately, the alcohol ban is an unfortunate no brainer, that I need to adhere to... until xmas eve.

Santa, as always is going to be far too kind to the residents of this house, but I know someone who’s getting coal, nothing but coal. That would be the person, whoever they are, who stole the bulbs right out of my xmas lights, the one’s they could reach anyway and that’s enough to keep them dark, those six empty sockets. These are the lights adorning my store’s sign, the one that juts out perpendicularly from the wall, the one that can’t be seen from the entrance of the building due to my less than optimal, far flung location, the sign that needs to be wrapped up in lights to be seen, to let people know that I’m open. Despite the countless other bulbs I have in my possession, none of them are compatible and I can’t change the whole string because I lost my ladder. Yes I lost a 6’ ladder, and I’m very sad about this because sometimes you really need a ladder and at my height it’s more often than not and additionally, I’ve had that banged up ladder a long time. All I can figure is that I left it at one of my events and it got absorbed into the maintenance room, but they’re not digging that hypothesis and are not giving up any ladders. They will also no longer lend ladders without the signing of forms and paying of a fee to the building manager and on principal, that ain’t happening. If it were left to the maintenance guys, they’d gladly help, but they fear the wrath of management and I don’t blame them. My question is “who the heck steals someone’s tiny light bulbs?” As I don’t expect an answer to that, I take solace in the big pile of coal that surely awaits them and karma.... please let karma be that bitch everyone says it is. I hate that B word, so I’m a little uncomfortable using it, but there’s really not an appropriate synonym. So go karma, go do your thing.

Green Fields & Heavy Metal

I’ve been imagining my body as a field of tall green grass, an endless field of fecund sprouts and wheatgrass below a stone still sky. This place is inconducive to cancer. Any stray adverse cell that wanders in is engulfed by my lush green grass, disintegrated and harmlessly absorbed by the soil, quietly, peacefully, easily.

A friend the other day asked if I was back to working a lot. I answered -- well, I could be working a lot, I’m just choosing not to. She asked what I was doing and I told her I didn’t really know... bopping around, visiting with people, doing whatever the heck I feel like. Actually, I have been at work a good bit, just not every minute like I would normally do and I confess to spending a good bit of my time there wandering around talking to whoever I run into and probably chatting my poor studio-mate to death.

I’m starting to cook again, I’m listening to music instead of the news, watching movies and being cozy by our xmas tree. I’m happy, I’m watching Dr. Who with my little buddy I’m living in the moment. The tall one is now 6’ 3 & 3/4”, I am 5’ 3 & 3/4” so I think he will stop growing now and be exactly a foot taller than I, there’s something poetic about that. When you look at a ruler, a foot is substantial, but not overwhelming, but when you stand next to someone a whole foot taller, a foot is huge, and when it’s your baby, well, that is something. We are making college lists... well, talking about making college lists and procrastinating the actual list making. Dude rocked the PSAT, I just found that out a few minutes ago, my guys are both in good places, happy campers.

I’ve been feeling great, I finished radiation barely two months ago, but it feels like two years, I’ve so enjoyed my furlough back into real life, my stint on the sunny side. I saw my surgeon for a follow up a couple of weeks ago and she urged me to see my primary care doctor for a check up, to get all my blood levels checked. I was so surprised when I finished chemo, that they just sent me on my way. I asked if they were going to check all my levels and see if everything was working as it should, and I was told “no, you’re done, see you in three months” which struck me as odd, but a lot of how the practice of medicine is done strikes me as odd.

So I went, gave some blood and got the results back in the mail yesterday and well, I hate to say it, but all I can say is holy shit, they didn't look good, they were not what I was expecting. Levels are high, levels are low, but most glaringly, my Ferritin level, which is the amount of iron in my blood is off the charts. I’ve been googling like crazy and what I’ve learned is that high iron levels are called Hemochromatosis. There are two kinds of this condition, Hereditary and Acquired. Hereditary, as you would assume, is caused by a defective gene and these folks keep their iron level down by essentially, regular blood letting. They get a jug of blood drained out every few weeks or months to get rid of the excess iron, excess iron is dangerous, it can kill you. The other kind of Hemochromatosis is caused by an underlying condition or very often {most often} caused by having excessive blood transfusions. I had six transfusions within a three month period, not so very long ago, so which do you think I have? No brainer, right? Sorry, not if you’re my oncologist, I was told through the nurse intermediary because god forbid he actually gets on the phone with me, that he wants to run the gene test because he suspects I have Hereditary Hemochromatosis despite there being absolutely no instances of it in my family and I’ve had not only normal, but low iron in the past and I had six blood transfusions, I know I’m not a doctor, but please! Regardless of cause, I'm a heavy metal chic for the first time ever... literally, and yes, I might do a little head banging, albeit, up against a wall.

So while I’m reading that Hemochromatosis causes organ damage, heart failure and all sorts of other undesirable things when left untreated and my levels are definitely in the need-treatment-zone, I am expected to wait a month until my genetic tests come back before we discuss it. Are you screaming in your head too? My glucose was also high and do you want to know what cancer likes? What cancer’s favorite tasty treat to snack on and thrive is? Sugar and Iron. I’m starting to think I need more than tranquil green grass. I Might have to arm that grass with laser guns or poison darts.

I have loved, loved, loved every minute of my parole, but I know what’s coming, tests, biopsies, mysteries, another odyssey through the medical industrial complex, chewed up and spit out. I felt so healthy before opening that envelope, but now my liver hurts, my heart hurts, I know it’s psychosomatic and yes, I knew that cancer treatment is not benign, but I’ve got to admit to being mightily disappointed in, and surprised by this development. I was much enjoying my recent trajectory and most definitely did not want to veer off back in the direction of hospitals and terror, I was feeling more and more optimistic the further away I got. Yeah, yeah, I’ll be a good sport, but do I keep having to develop the maladies that require abstinence from alcohol? Because I could use a drink or two, three, four, five.

Best Ever

Well gosh darn it, I had the best birthday ever, and having turned 49, I’m entering the last year of my first half century. I have a completely different perspective on getting older these days, I can’t think of anything better than living to be old. Every year is a gift and an accomplishment. I celebrated my birthday for a good four days. Things began well on the actual day, with an unexpected card slid under my studio door. That night big stayed home to watch little so I could go out. I went with friends to the Craftland Holiday Party, so much fun and then for a lovely dinner. I, who am camera shy actually forced other people to have their picture taken with me.

Next day, while I was at work, the guys cleaned up the house, they actually did, I am a witness. Vacuuming happened, trash went out, books and things went back to rooms, the kitchen floor even got swept. My son’s friend-who-is-a-girl picked up my giant “happy birthday to ME” cake because she is swell, and by 5p.m. the house was festive, happy and swimming with friends, wine and food. One of the nicest nights I’ve ever had, and the first time in a long time, I’ve had a house full of people. After everyone left, the girl, my two boys and their new older brother a.k.a. the tenant and I watched a Saturday Night Live Holiday Special and laughed like mad and I danced in my head, because my feet were too tired.

This is going to be a good year!