Tuesday, February 28, 2012


Every day I hear or read something quoted in the news that I can't believe I'm hearing in the 21st century. Nothing takes your mind off cancer like Rick Santorum, or Words with Friends and thank goodness, Jon Stewart, I don't have to waste energy being outraged and appalled, I can let Stewart do it for me, and funnier.

What's almost as annoying as Santorum is falling out eyebrows, because do you know where eyebrows go when they fall out? Right smack into your eye.

I've done a complete turn around, however, on the bald thing. If girl baldness was in vogue {because I'm so stylish and yes, you can laugh here}, I'd stay bald, I think I look better, it's comfortable and low maintenance. Drafty, yeah, that's the big drawback, but if you wear a hoodie, and leave hats all over the house, you're all set.

All the doctors and nurses kept telling me that the effects of chemo were cumulative and I realize now that I didn't understand what that meant. I thought that being on an every three week cycle meant that when I went for a new infusion, the old stuff was out of me, but I think what they meant by cumulative {and I don't know why I'm only figuring this out now} meant that there were still drugs doing their thing and now we were adding new ones on top of old ones and with each subsequent chemo, there'd be more drugs in my system and hence a longer recovery time so that's why the symptoms last longer, the dry yucky mouth, aversion to food, queasiness, fatigue, all that fun stuff. I've been a little slow on the uptake here which isn't like me.

Sunday, February 26, 2012

Cowboy Junkies

I love the Cowboy Junkies, I’ve never seen them live but I had tix to go see them last night at a swanky new, small venue nightclub. I don’t go to see live music often, there’s rarely someone I want to see, some place I want to go, but I really wanted to go to this. Go out, change of scenery, close my eyes and listen to some good music. A friend bought us tickets for my 48th birthday which came and went quickly back in November mid-diagnoses. We took a leap of faith that I’d be able to go.

I psyched myself up for days, but when it came down to it, I’d had a day full of dizzy spells, nausea, sniffling and coughing and I know my white blood counts are at their lowest point in the cycle and ultimately, I’d be just stupid to go. Wasn’t even sure I could walk from car to door. So I called my friend and her husband got to go instead. Luckily, I like him a ton, so I’m glad he got to go.

And then I just put my head on the kitchen table and sobbed. I’m getting teary just thinking about it. I think my weeps come with the dip in white cells, but I don’t know. I just felt so, so sad, sad, sad. I feel like I’ve lost my life in such a short time. I rarely leave the house and I’m getting sick of this house and everything in it. The house I fought so hard to get in the divorce that never happened, so still actually isn’t mine even though I’m bearning all the mortgage and maintenance costs and responsibilities.

I am disconnected from friends, from school, from the real live moving world out there, from my business and increasingly from myself. I don’t laugh. When I hear people laughing I’m amazed at the freedom of it. How unclenched you need to be to laugh easily and truly. I can’t remember laughting and now I’m wondering if I’m someone who never lets go and laughs.

I have tickets to see David Sedaris in April, so I guess I'll shoot for that, and if anyone can make me laugh it would be him.

Friday, February 24, 2012

To The Grave

People shouldn’t flick their tongues, you know, in that pseudo-sexual way, it’s nasty. They especially shouldn’t do it on TV, you guessed it, I watched the season premiere of Kloe and Lamar... you know, Kardashian.

If one of the Kardashians was having chemo, they’d have 15 people there, coiffed to death to bear witness {and they’d bring wine to drink, maybe a catered lunch and fire-breathing acrobats for entertainment} and the one with cancer wouldn’t notice all the ones there or the canapes, they’d notice the single person absent and then there’d be drama, lots of whining and complaining and hurt feelings about why so and so didn’t show up. Eventually, there’d be a mediated reconciliation, but man, these folks are drama queens and I’m including the Kardashian men in that, big time.

So yeah, I’ve gotta quit, this is a bad habit, is there a patch for the Kardashians? I’m going to stick with only the shows I watch with G, the mom/boy bonding shows which currently are 30 Rock, The Firm and get this, The Voice. Boy turned me on to The Voice, and I love it, I was hooked immediately, those giant chairs of power with the button of approval that makes the great sound, zoinggggg. I don’t know how the rest of the show works, but the Blind Auditions are brilliant. Really, it’s a great concept, there are some great singers and there’s none of the mean, let’s make fun of you snarkiness of Idol which I banned him from years ago for getting too heavily invested and because I hated it.

You want to know how to alienate your teenaged grandson? You come over for a few days and monopolize the TV 24/7 at blaring decibels. Then, when he invites you to watch 30 Rock because it’s “the best, funniest, most hilarious, clever show” in his words, you sit there and say things like “this is funny?... how is this supposed to be funny?... oh this is so stupid, what is wrong with these people?...how could anyone find this funny?”

G said to me when we went up to bed “mom, I feel your pain, that was the worst half an hour of my life.” And it probably was, that boy has a charmed life.

So while I’m being bossy, let me tell you what not to say to someone with cancer. Don’t ask them why or how they got it. And if you have a theory, don’t share it. Unless they’ve been toasting marshmallows by the ambient heat emanating from their neighborhood nuclear power plant, take it to the grave.

Thursday, February 23, 2012

Wednesday, February 22, 2012

Blissful Bathroom Floor

I had such extreme dizzyness, heat flashes, room spinning today, I had to just drop to the floor. Face down on my kitchen and bathroom floors are not places you'd ordinarily want to be, but it was nirvana. Cool floor against my face dousing heat waves as the room slowly, methodically, stopped spinning. Extreme enough to send me to the hospital to get rehydrated and checked out. Grateful to neighbors where J can hang out at a moments notice and also proximity of hospital for rides. Even better when neighbor has puppy.

Nurse Eileen is my favorite, she says it like it is. She said "hey, you just had your last Adriamycin and the effects are cumulative and the last one kicks your ass, you're normal." Music to my ears "you're normal" how often do I get to hear that?

Home now, feeling a little better, but not tons and still have the jitters, so I'm googling. Turns out that the anti-nausea med that warns of sleepiness on the bottle, the one on which I should not operate heavy machinery is also known for giving the jitters, crud. Bad call, I'm going back to the one that gives me headaches.

I realized today that I'm the only one in the chemo ward that comes alone. I prefer it that way, but I wonder if due to experience I've become too lone-wolfish. I'm used to doing things alone, it's normal for me. I wonder if having someone in my life for so long who did not wish to be included and did not want to include me has made me this way and is it a bad thing? Is it something I should work on? But as for chemo, I just get comfy in the chair and close my eyes and chill or read or catch up on my Words with Friends turns which are many {and I must stop mistakenly calling Friends with Benefits}, I truly don't need someone there staring at me for hours on end. Very appreciative of the rides home and end of chemo visits by my driver du jour, but that's really all I need. It bothers me that my doctor and nurses all feel sorry for me, I don't see myself as pathetic at all, but apparently, going to chemo alone makes you the object of sympathy, which I think is unfair.

A beautiful friend came over yesterday to give me a pep talk and showed me her mastectomy. It wasn't nearly as bad as I thought, it wasn't bad looking at all except for the horrible chafing from radiation which will go away. I'd seen a picture once on-line, I suppose, where the mastectomy looked all disfigured like a bad burn, so I feel better about this avenue of consideration. Maybe my boobs have played their part and they can leave in peace, we'll see. My hypothetical, future, on-line dating profile is pretty much shot by now anyway.

Tuesday, February 21, 2012

Long Distance Runner

I wish I was a runner, a marathon runner. Someone who knows how to separate body and mind, to keep running through pain. One of those runners who still goes out for their morning jog when they have a bad cold or their period or just don't feel like it, who doesn't obsess over ever little twinge, every racing heart.

I feel like an epic cave-in. Three short months from invincible, how-bad-can-it-be, warrior goddess to twitchy pile of soggy socks. I'm shocked and appalled by how fast I lost my resolve, my fight, my audacity.

I wish I was a runner and knew how to run through this. I wish I could go to the audacity store and buy some more, Audacious 'R' Us. I wish I could go to rehab and purge every last chemical, get fit, eat green and go to yoga every morning and get my strength back. And this should be somewhere warm, very warm, with a pool and shady trees.

Sunday, February 19, 2012


Can’t sleep, can’t be awake. In the throes of the ittery, jittery, nanomites crawling up and down the inside of me. Tight heart beating fast, hard to catch a breathe. Hate this feeling, hate it, hate it. Keep telling myelf it will pass, it did last time, but when? A day, or two or three? Too long, too long. And all for the absence of a smashing success of a result, so what’s next? what gruesome regimen? What surgery, or surgeries, more than I’d bargained for, prepared for.

Hot, cold, hat on, hat off, heat on, heat off, zip up, zip down, night sweats and stomach cramps. Haven’t seen my kids since Thursday, longest time ever. We all have our limits and this is mine, but what do we do when we meet our limit? What do we do?

Friday, February 17, 2012

Day After

I feel pretty good for the day after chemo. I slept peacefully throughout the day alternating with the whole first season of Downton Abbey. Tomorrow Season Two.


I'm taken aback by the news of the death of Anthony Shadid. Gifted writer, intrepid reporter if ever there was one, fearless, dedicated, compassionate and so talented. What a body of work, life changing, world changing body of work by the age of 43. Asthma, so senseless, massive stroke or coronary I could understand more, but it just underscores the senselessness and unpredictability of life and death.

And the image of Taylor Hicks, another favorite of mine, humanitarians and artists both, having been through so much in his life, carrying his friend's lifeless body how many miles? Heartbreaking.

I don't know, maybe it's easier to go quickly, and without warning, without the fear and anxiety that comes with a diagnosis... better for you maybe, but perhaps not those dealing with abject shock and horror.

So sad, Rest in Peace Anthony Shadid, you served your world well.


Thursday, February 16, 2012

Very Long Day

Yesterday I saw someone I'd not seen in awhile and they touched my head and said, "wow, you're really letting your punky side out, what made you decide to shave your head?" I laughed and said "cancer, knucklehead". She was shocked, I probably could have had more finesse, but I was so amused that with all the obsessing over whether it's o.k. to go out bald, it hadn't occurred to me that anyone would think it a bold fashion choice. She was a most excellent sport. Life is so much easier when folks choose to be good sports.

I don't laugh enough anymore.

I had a lot of fear and anxiety about chemo today because I just don't feel like I rebounded well from the last one, so I felt like I was going into it already depleted. I've been anxious to have surgery and have a break from chemo and to get this thing physically out of me. But when my doctor examined me, she said that while the tumor has shrunk some, it certainly hasn't gone away, and apparently that is possible, and desirable, and it's still large and wouldn't be removable through lumpectomy. Inadequate shrinkage. My tumor is on viagra.

All anyone has discussed with me is lumpectomy and now we're in mastectomy realm which is so much more complicated. Toss in that I'm so disappointed there hasn't been better progress from all of this that I got weepy and emotional, but instead of giving you a minute to pull yourself together they start flinging social workers at you and that doesn't help. I don't want to talk about it, it is what it is, what the hell is anyone going to say, I was just longing for a minute to gather myself, no such luck. And I guess I need to get used to the idea of back-to-back courses of chemo.

So a pretty exhausting day which begs the question why am I writing this at midnight, I don't know, sometimes I just don't feel like going to bed.

Both my kids needed to be picked up from school today, sick, by their dad as I was tethered to a chair. I've never not been there to take care of my kids and I feel bad they couldn't come home. I don't like being unavailable to them and I hate not having a choice in so many things. I feel like life is passing me by, whizzing by while I sit here Ms. Weepy-face with tingly finger tips and muddy brain, too tired to participate.

Yes, a long day.

Wednesday, February 15, 2012

In Print

I was really nervous about going to the event at J's school tonight. I'd been weepy all day and thought when people talked to me I'd just be a soggy, blithering mess, but I wound up having a lovely time. You're not getting out much when the elementary school pasta dinner with frozen "meat" balls and hoodsie cups is a big night out.

Not long ago an acquaintance, a local writer and fellow 5th grade parent asked if she could write an article for our local paper about my blog, she has dibs on the back page to do with what she pleases. I vacillated between yes and no, it was hard to understand why she would want to, but I was so taken aback by how much she loves the blog, so touched, so validated in a way I can't describe, so with life already in chaos I thought, what the hell, learn to accept a compliment and see where it leads, be fearless.

We agreed that my name not be used, it's available on the blog for anyone who must know, but seeing it in print all over my neighborhood seemed too out there, too revealing, and I felt like the article would be more about the blog, less about one specific person. Anyway, the editor took liberties and my name is pasted all over the article, but well, I guess that's o.k. too. I'm really flattered that someone would find my writing, writing-worthy and you know... worse things have happened.

I feel sorry for anyone who tunes in now because my last post is so bleak. So message to new readers, start at the beginning, before I became a musty cave dweller, there is humor, I swear. Read Semen, or Sea Cucumber. I'll get back on track, I swear.

So thank you Liz Rau for this beautiful article and for giving me the self-confidence to keep writing. http://eastsidemonthly.com/stories/Cancer-Schmancer,

Tuesday, February 14, 2012

Bad Storm

My warrior pose has turned into scaredy-cat pose. I'm not feeling well, many chemo symptoms have lingered right on through this time, and it's only another day until a new cycle. I'm tired and depleted and I just don't feel up to five hours of poison being pumped into me. I feel like a little kid who has to go to the dentist and get their first cavity filled, remember that dread? That panic?

I rearranged my schedule so I could take J to his last pasta night at his school tomorrow, as he'll soon be an elementary school graduate and I'm feeling as nostalgic as he. It's just now occurring to me what a bad idea this is. People will come over, they will say hello and "how are you doing?" and that's all it takes for me to tear up. I'm so unbalanced, off-kilter, being a drug addict is no fun.

The stress of not knowing is getting to me... it's been a 3 month leap of faith, poisoning myself, making myself dog sick, so that I literally can't see straight and I have no idea if the chemicals are doing their job. My hair fell out, but not my eyebrows, what does that mean? Is it killing some of the cancer, but not all? What if my cancer is so mean and sneaky it's found a way to avoid this onslaught? What if they're hiding in a cave in pakistan until the bombs stop dropping. I need to know, but I have no control over this process which is maddening, just a passive participant.

All I know is that I have a bad feeling about chemo on Thursday. That it's going to be the one that puts me under or nudges me over the precipice, and still I'll just walk in there like a compliant child despite my panic.

I totally understand why people partner up, and why they live longer. I'd sell my soul right now for someone to hold me and tell me it was all going to be ok, and make me believe it. Someone who would kiss my head and tell me it was beautiful. This is how far gone I am, pulp romance fiction. It's hard being single in a bad storm, but I know that it's even harder being married to someone who just stares at you from 15 feet away and doesn't do any of those things, on the other hand, you can go to bed as soon as they get home and make them go to the grocery store and fix breakfast for the kids.

Monday, February 13, 2012

Natural News

I saw a link on facebook this morning to an article at naturalnews.com that declared Whitney Houston another victim of the pharmaceutical industry. I was going to comment, but didn't want to get into a war of words with anyone, but the article has been nagging at me all day.

I'm no fan of the pharmaceutical industry, they're greedy, manipulative, big biz at it's worst... at the same time, they save lives. One of the first things we were all taught as kids and in turn teach our kids is that "you only take the amount the doctor says to take", even if it's a yummy, gummy, multicolored vitamin, you only take one!!!

I don't think Whitney Houston is a victim of anything other than her own demons. There were probably over prescribing doctors involved and pharmacy's willing to over fill, a list of enablers, but the pharmaceutical industry didn't wedge open Whitney's mouth and pour a whole bottle of Xanax down her grammy-winning gullet and then offer her a whiskey chaser {or five}.

There are times when a single Xanax saves my life, sorry natural news if that makes me weak, or a dupe. Nat News also says that Heath Ledger was "killed" by prescription drugs and there is a "holocaust of prescription drug deaths every day." Bad choice of words.

Now I have mixed feelings about drugs these days because my next chemo is on Thursday and I'm dreading it {excuse me while I grab a Xanax}, truly dreading it. I understand why people refuse treatment, why they just walk away and wander off into the wild blue yonder, it's an appealing notion at the moment. Countered of course, by the whole dying of cancer thing which is really unappealing, more so than my level of anxiety and toxicity so I'll be showing up on Thursday, because I suspect there are not enough herbs at whole foods to deal with my unfriendly malignancy and I'm not willing to risk it, sorry Natural News, I'm going big pharma, warts and all.

Sunday, February 12, 2012

Soul Mates

I have not been discussing Rick Santorum with my 10-year old, it did not seem an appropriate or relevant topic. Nor have I been talking about Rick Santorum in front of him, because I've been reclusive and not really letting people come over and visit... I've been blog ranting only. None the less, he comes home from school on Friday, my baby, my sweet pea, the apple of my eye,  and asks me the names of the people running for president and I recite them. "Santorum, that's it, Rick Santorum, I don't like that guy at all... we were researching the candidates today and I don't like anything he has to say about anything... he doesn't like people and he thinks his religion should be everyones religion and... and... and..."

Damn that gave me a kick, I always knew that kid was my soulmate, but he proves it to me over and over again. All weekend, he's been ranting about Rick Santorum. I hear ya kid, I know exactly what you mean.

We have the same cold and cough too.

Friday, February 10, 2012

Cancer Wasting

When one of the nurses early on told me that patients often gain weight with breast cancer treatment I was horrified and immediately went into denial. And while I  haven't gained weight, nor have I lost much which doesn't seem fair. When you're eating a fraction of what you normally do and chocolate is repellent, you deserve to lose some weight. In fact, when someone tells you have cancer, I think it would be just and fair to lose 20 lbs. on the spot. If I'm going to have cancer, I just assumed I'd have a little cancer wasting as a fringe benefit, another goody bag item, so I'm finding reality in this regard a tad frustrating.

I've never been a fan of the Susan Komen Foundation because I know that comparatively, they give a very low percentage of their haul to actual research despite wanting to trademark "for the cure" to prevent other health-based groups from using this common phrase. In fact, Komen only gives 17 cents on the dollar to research. What I learned from the Planned Parenthood dust up is that they also don't fund any research involving stem cells, which isn't surprising from a right-leaning organization. However, I'm stunned to learn that neither does the American Cancer Society. Other mainstream seeking-a-cure foundations, such as diabetes, do fund stem cell research, as I think they all should. I wonder if anyone is currently doing stem cell research as regards cancer and if not, what a waste. We humans are our own worst enemy. Who thought in 2012 we'd be arguing about birth control, is there such a thing as de-evolution? Rick Santorum is pretty compelling evidence that there is. A few years ago, the voters in his state were able to see him as the fringadelic, cuckoo bird neanderthal that he is, and now, all of a sudden, he's mainstream, viable. Yep, we are de-evolving, maybe when the clock gets turned back far enough, my cancer will go away because it won't have existed yet.

Tuesday, February 7, 2012


Now that I'm stark-raving bald, and pretty used to it in private, I'm not sure how to deal with it in public. I've been wearing hats while out and about {which isn't all that often}, and a hoody pulled over the hat. When it gets warm, I slip off the hat and I have a nice loose hoody, so generally look more like a surely teenager than a cancer patient.

These few warm days have given me a glimpse of spring and standing in line at the bakery today {where I got tea, but forgot to buy bread which is why I went}, I got really hot suddenly, so I took off my hood. And then I saw myself in the mirror and put my hood back on.

I don't want to shock people, I don't want to make them uncomfortable, I don't want sympathy, and I don't want to be an exhibitionist {just for the sake of}, but I do want to be comfortable. Fact is, I'm bald... so is it o.k. to just be bald? Bald men don't cover up, but bald woman, does kind of obviously mean you have cancer or something else undesirable {but luckily not contagious}.

As I'll be this way for a while, do I just make peace with people staring at me and/or being uncomfortable, or do I have to have something on my head. They should train cats for cancer patients, I wouldn't mind having a cat wrapped around my head, but hats, scarves, it's so high maintenance. I thought a simple bandana would be good, but they slip right off and reaching for a hairpin doesn't help. And a full on headscarf is a dead giveaway for cancer anyway, so my question is... is that subterfuge necessary?

Monday, February 6, 2012

Good Genes

I am free of genetic mutations. In other words, I will not be growing another head anytime soon, or having a hysterectomy and double mastectomy. This is good.

Sunday, February 5, 2012

Five Weeks

I had such a nice day yesterday. A good solid day. I worked at the shop, all by myself for a change and not only got through it just fine, but I really enjoyed myself, it wasn't a case of just gutting it out. I Saw some old friends I didn't expect to see anytime soon and it was lovely, and we had truck lunch together and what is better than truck lunch with old friends?

I stayed after closing and did a little work and then in the evening a friend came over to watch a movie. On Friday, I had two friends over for lunch and it was super-duper. I've been really bad about letting people come over, even though it's probably in my best interest to. This is supposed to be my "good" week and based on yesterday I had high hopes, but I guess in my alternate universe it's best not to have hopes based on one day to the next cause things work differently here.

Today I woke up all congested and with a sore throat. After breakfast, I was sitting in front of the fire and I heard someone rolling my trash can out for trash night. When I looked outside I saw my neighbor sitting on a retaining wall, so I went out to say thanks and fetch the paper. It's nice out today, so I sat with him in the sun and we chatted, it was nice. But then I started to cough a lot, so I went in and by the time I reached my door, I had to break into a run. I'm so glad I did the dishes this morning, I'm so glad I ground up a lemon in the garbage disposal, I'm so glad I have a garbage disposal and a spray-thingy. Yep, perfect place to puke... and puke... and puke. So far superior than spending time at the alter of the porcelain goddess, I think whoever invented the garbage disposal should have won a nobel prize. And yes, I know they're bad for the environment, although I can't remember why, and I don't care. Even when I'm not puking, I think it's one of the best modern conveniences.

I don't think this is chemo barf, I think it's I-caught-a-bug barf, because I'm in the valley, the low, low valley of diminished white cells. Damn.

I officially declare this as piling on, where can I lodge a complaint?

I think I give up. Not big picture give up, but realistic give up. I have five more weeks of chemo. I just accept that they're going to suck. After one good day I was having delusions of grandeur... maybe I can get back to work... maybe I should call my rep. and tell him it's o.k. to start selling my work again. Nope. Anything good that happens in the next five weeks I'll take as a gift, but I'll expect nothing, make no decisions or even look ahead more than an hour based on how I'm feeling.

Five more weeks. Seven down, five to go... and I'm just going to do them hour by hour.

Saturday, February 4, 2012

Valet Parking

I've scored a new item for my Cancer Goody Bag. My bright, shiny blue, temporary handicapped tag arrived in the mail yesterday only a week after I applied, despite the form indicating that it would take 6-8 weeks. So somewhere, in Rhode Island, there is an office working efficiently, what do you know!

I do solemnly swear not to abuse it and I'll admit that my quest had to do with one handicapped parking space and one only, one that I've been obsessed with for years. Parking has become increasingly elusive at the mill building that houses my studio. The best place to park is in the courtyard between the two wings of the U-shaped building. But if you drive all the way in, and there are no spaces, which lately, there frequently are not, you have to back all the way out which can be treacherous because it's narrow, and I am a particularly poor backwards driver. At the very end though, right smack next to the door closest to my unit are two handicapped spaces. Spaces that are frequently taken up by large SUVs sans handicapped tags, because obviously these folks are special. Except not anymore they're not, because that is now my private, reserved parking area and they will be getting notes, oh yes they will, if they are parked there which causes me no end of glee. Somewhat sinister I know, but I'm now on a mission from god to clear my private parking space so I'm going to print out flyers for offending vehicles, because this is such a good use of my time {o.k., not, but so what}.

Thursday, February 2, 2012

Charts and Graphs

Even I am sick to death of hearing myself whine and complain, and trust me, if I'm not complaining out loud, I'm doing it in my head. I went into this thinking I'd have some grace and class, some measure of grit... not so much it seems.

I should have kept better track of the details of the chemo cycle. How many days I felt super lousy, how many lousy, how many meh... then I could look back and realize it was a repetitive trajectory, and I'd know when I'd be feeling better instead of thinking every really bad day would last forever. I've let the bad days whisk me into doomville to easily. Should have relied more on empirical data to keep a little saner.

I'm off to take a shower where there's not nearly enough to do anymore. No shampoo, rinse, condition, no leg shaving, getting in there is anticlimactic. Sometimes I just stand there wondering what I'm doing in there, but I never really wake up without a shower, so there I am. I bet my water bill will go down, there's a cancer upside.