Monday, April 30, 2012


Drip, drip, drip... back in the chair. It’s a slow day here today, sometimes the clinic is packed and noisy, with people receiving treatment in the hallway. Quiet is better. I was prepared for months to be receiving weekly taxol which is supposed to be much, much easier than the previous protocol, but with the new oncologist came a new drug, Carboplastin, which is suppsed to be just as bad as the Adriamycin, so I need to adjust my expectations quickly. I’m holding out hope that I’ll be able to handle this drug better, that Adriamycin and I were just a particularly poor match.

It’s both comforting and disconcerting, the familiarity with which I enter this building. I know my walking route, that if you enter through the exit door, it will still slide open automatically, to ignore the “no cell phones in treatment rooms” sign in the elevator. Don’t worry, I asked it it was o.k. months ago, “sure you can use your phone, why couldn’t you?” “Because there’s a sign in the elevator that says not to.” “Oh, just ignore that.”

I’m accompanied here today by my bevy of Apple products. I know I shouldn’t love them as much as I do, they’re made by low paid workers in China, they dodge paying their U.S. taxes... they’ve become the man, a behemoth, but none the less, they’re so beautiful and my laptop is surely my security blanket, I must have it or be near it at all times.

I’m also accompanied by a big bag of homemade Goji berry and almond granola which was gifted to me by someone I would have least expected to have become such a valuable participant in my ordeal, a very nice surprise. Good surprises are good. Eloquent today. I got home the other night, exhausted after the show and I just layed on the sofa, one arm wrapped around the big, beautiful jar of granola, eating it with my other hand. I’ve never made granola, but I have the recipe now and I look forward to giving it a try. Adventures with oats.

The nurse just handed me the printouts for my drugs, they contain the correct pronunciation and both the common and less common side effects. I really don’t know if reading them is a good idea, but of course, I do.

I found out the other day that my insurance doesn’t cover “blood products”. They covered everything relating to my transfusion a few months back, except the blood. I was really wary of the blood tranfusion at first, that’s a disclaimer you really don’t want to read, but it made me feel so much better I decided I wouldn’t hesitate in the future, but for $1,200 a pop, I’ll be crawling up the stairs before I have another one. And seriously, what the hell? How can they arbitrarily decide they don’t cover something so fundamental? They paid for the $500 heparin shot that went with it, and all of the materials and everything else, but not the blood itself? Absurd.

I’m off to eat my granola and recline in the big chair for the next few hours, hoping I’ll be out of here in time to meet the school bus, and the wheel goes round and round.

Sunday, April 29, 2012

Volunteer Opportunity

Craftopia was a ton of fun for me. A chance to catch up with friends and feel functional for a change, well worth it despite the ensuing exhaustion. So grateful to so many people that helped out. I think the show was successful, but I'd really like to find a way to increase foot traffic 30%. No easy task as we already do everything we can possibly think of and got really great advance press.

At every show I've hired my eldest son and his pack of friends to work as porters helping the vendors bring in all their stuff... the crafty don't travel light. This time, however, instead of speaking with parents and organizing it all myself, I not only left it to him, but told him I needed volunteers only. Lo and behold, at 7:30 a.m. on a Saturday morning I had a giant posse of gracious helpers. I am proud of my boy, he got the job done and oh, this pack of teenaged boys, many of whom I've known since preschool or close to it, I just adore, and I'll go sit in the chemo chair tomorrow because I want to be at their weddings some day. G stayed for the whole day with another boy working the entry table and they did a fabulous job and were just plain helpful and wonderful.

I took G out to dinner tonight to thank him and now we're getting ready for Game of Thrones, so life is good. I don't talk about G here nearly as much as I talk about J and it's certainly not because I adore him any less, it's out of respect for his privacy. I figure the only thing worse than being in High School and having a mother that's blogging is to have one that's blogging about you. While G knows about the blog, but chooses not to read it, I suppose some of his friends and schoolmates may take a peek here and there and I know many of their parents do, so I try to keep that in mind.

Nothing would make me happier than to brag about my tall, beautiful, straight A, great athlete, confident, charming, first born son. Or to share my exasperation when he's being a knucklehead which like all teenagers is often. Or my worries that he keeps everything inside and is a tad too afraid of emotion like his father, that they have a little too much in common, but past this post, I'm going back to my silence.

At 11a.m. tomorrow, I'm a hamster back on the cancer wheel, but I'm happy to say I have really enjoyed my surgery vacation.

Friday, April 27, 2012

Twinkies and Twizzlers

I'm feeling much better and I feel horrible I haven't posted that sooner. I'm up to my eyeballs getting ready for Craftopia tomorrow and I think busy is better. I think the planets are aligned for a great event. The weather will be nice, but not too nice and we made the #1 thing to do on the RI Monthly e-blast {so no scrolling down necessary to find us} which is great. More and more people seem to have heard about the show and that's really exciting... to have created something from nothing, and I continue to adore working with my partners on this, we're a great team and it's amusing what utterly different strengths {and weaknesses} we all bring to the table. We were lucky to find the right combo which is a big part of why the event is so successful and fun for everyone involved. It's a great feeling too, realizing that we're helping other local artists make money, even if only for two days a year. A labor of love is a good thing.

Not long ago, I was reading some on-line cancer message boards and folks were talking about what foods they were able to eat during chemo. For me it was matzo ball soup and cold wet fruits and vegetables like watermelon, cucumbers, cold hummus with lemon on toast, and of course crate after crate of beautiful, shiny clementines. In this discussion one person said all they craved were twinkies and pepsi so that's all they ate and the next ate only baloney sandwiches and twizzlers, and so on.

So what I've decided is these folks must make up a vast majority of the 35% with poor prognoses, add in the smokers, heavy drinkers, older folks with other health problems and me and my vitamix should be fine, it only seems fair, although "fair" doesn't have much to do with things does it?

My kids busted me on too many vegetables in the smoothies, I think the tomatoes gave me away, so I've cut back and yesterday's secret ingredient was watermelon rind, with just the outer green part cut off and they loved it, it really gave the drink a nice crisp flavor, almost like cucumber.

As for me, I've bought my first beet and I'm aiming for beet and spinach with a lot of lemon and ginger and probably strawberries and/or blackberries.

Wednesday, April 25, 2012

Coconut Oil and Goji Berries

Malaise is my enemy this week. I can't seem to get myself going, always going back to bed. I slept through a doctor's appointment today, first time I've done that, and I've had a lot of appointments.

I felt so badass when I started this, had no doubt that I'd be the one to kick cancer, but now I'm not feeling so sure. I have a terrible feeling that I'll have a recurrence in a few years and that will be that. It's a horrible feeling. I'm not the pity-party type, but it's finally hitting me, fuck, I'm 48 years old, what the hell am I doing with cancer and how did I manage to get such a dangerous, nasty cancer? Fuck, fuck, fuck is all I can think, it's wearying. This time in my life was supposed to be a great new beginning, blue sky days, not the beginning of the end. I know it may not be, but I can't stop feeling like it is. I like the new oncologist, but there was still no pep talk and it makes me think there just isn't an honest pep-talk out there for me and that's why none are forthcoming.

In between feeling pessimistic I'm glued to the food books, which foods help your cancer and which hurts it... how do I prevent a recurrence? What food, what herb, what supplements? Why, the really freaking expensive one's of course. So is this my life? Worrying about everything I put in my mouth, are acai berries better than goji? Do I spend all day eating berries? Then I think my pessimism will give me more cancer, knowing full well that optimism didn't get rid of it.

I've had a good month, I completely forget that this was my month to recover from major surgery... I've had a happy, fun, wonderful month not being drugged into submission, I've been cooking, walking, seeing friends, spending really good time with my boys. Maybe it's the start of chemo on Monday that has me all knotted up. Been there, done that, it was fucking horrible, barely survived and here I go again, starting at square one. I feel dread and terror, like when the nurses at the pediatricians office had to pull me out from under the table to give me a shot when I was little. I had to laugh when 35 years later I was helping pull my son out from under a similar table for his shots. I'm not laughing today and while I want to help myself, I can't even summon the energy to go do my PT exercises, page after page of them.

On the upside, did you know that coconut is really healthy? So have a macaroon and feel good about it. I always thought coconut oil was bad, but no sir, it's the way to go... apparently canola is the worst followed by all the other vegetable oils. Olive and coconut are the way to go.

Monday, April 23, 2012

Beyond Perpendicular

My hiatus is over and I met my new oncologist this morning. I like Dr. Sikov so much better than my previous doctor. I was annoyed that I waited almost an hour, but appreciated that he spent so much unrushed time with me, and so is now probably running even later... that being the case, I'm willing to wait.

Dr. S was much more informative and simply exuded a sense of confidence and honesty that I didn't get from my previous doc. I can't envision him pouting at me, thank god. I'm back in the chemo chair next Monday where I'll be getting Taxol every week and additionally, every third week I'll be getting Carboplastin, so those weeks will be worse. The whole walk home I was trying to remember the name of that drug... carbonara, carburator, carbonated.

I'm feeling demoralized, maybe it's the grey, cold weather, maybe it's being back on the medical treadmill with three appointments this week, maybe it's the odds of my cancer, what a sucky, nasty cancer I wound up with. Maybe it was trying to shop for new shirts yesterday and coming home with nothing. Maybe it's everything and nothing Vitamixed into a frothy blend. I feel sad that it's come to this, that I've come to this.

I did have a PT breakthrough yesterday. I was lifting my arms to the sides, getting only slightly beyond perpendicular as usual, and then all of a sudden, something gave way and I slowly and with great care {and pain} was able to lift my arms over my head. It hurt, it was strangely exhausting, but I was able to do it and that was a relief.

Thursday, April 19, 2012

Corsets and Kickbacks

It's true, as I suspected... when you're not leading with the boobs, you're leading with the belly. This is unfortunate for me as I have the multiple-baby-pooch and a few extra pounds. When you have a Diep Flap reconstruction, the 14-hour microsurgery, you get a free tummy tuck, literally, because they take fat and skin from your belly to build new boobs and then they tuck it all in nicely. Unlike when they rip you open for a C-Section and staple you up willy nilly with no thought to symmetry or tidyness, here there is a plastic surgeon involved, so you get the tummy tuck.

I think since I'm not having the surgery, which my insurance company would be obligated to pay for, I should at least get a kickback, 30-50% of the cost seems fair to me and of course there'll be no complications, medications or physical therapy that they'll have to pay for, so they save even more. 50% kickback, or the procedure of my choice, like just the tummy tuck.

The most unfair thing is that because of the extreme tightness in my chest, I feel like I'm wearing a crazy tight bra while the only fringe benefit to mastectomy is not having to wear a bra. I feel like I'm wearing a corset, so I envision myself with a perky, corseted chest and when I pass a mirror it's not there... just belly. No fair, seriously no fair.

Wednesday, April 18, 2012

Half Glass

After the kids got picked up by their father, I went to the studio for a couple of hours and got a little bit done... not much, but a little and the whole time I was there I was starving. I was thinking of doing some errands on the way home, but I was too hungry, so I decided to be nice to myself and sit at the bar at Chez Pascal were my friend D is the bartender. Turns out though, that Wed., is D's night off and I'm terrible about eating out alone.

Couldn't very well turn around and leave when the owner/greeter is sweet as pie and the bar was empty, so I grabbed a seat and had onion soup and bread, most delicious comfort food and was perfectly happy staring out the window. I had planted myself right in the middle of the bar and eventually someone else occupied each end. I don't know bar etiquette, do you say hello? pretend to check your email? Eventually, as the bar filled up, an older couple sat next to me, they were a couple of characters in the best possible sense. The man asked if I was a cancer patient and when I said yes, he started nudging his companion, "take off your wig, take off your wig, show her." And she did, brave woman. He insisted on buying me a drink, but I haven't had a drink in months, so what do you do when someone sincerely wants to buy you a drink and for the kindest reasons? You agree to half a drink. So I had a half glass of the loveliest Sauvignon Blanc from Burgundy. Yep, apparently Burgundy is now allowing other types of grapes to be grown there and well, the white grape growers are doing a fine job.

This couple drove all the way down from Boston to eat at Chez Pascal because they like to be adventurous. Both divorced and going on wednesday evening adventures together, so I'm hoping that bodes well for later in life dating. I've been feeling demoralized about that because well, feeling like I've lost quite a bit of mojo, literally. Feel like the goods I've got to sell diminish by the day and I don't know that I had a great sales presentation to begin with, but a girl can hope because it would be nice not to sit alone at the bar among other far more important things.

I got home and went to make tea and couldn't help but notice the three dark chocolate bars I've been trying to ignore, sitting right there near the tea, so I've finally delved into them {you'd be impressed to know how long they've been there} and am much too relaxed to work on my taxes, or put away laundry, so I'm declaring it movie night.

I really did enjoy that half a glass.

Tuesday, April 17, 2012

Secret Ingredient

When I think about this past winter, all I see is cold, dark, grey, black and I feel myself getting sucked into the cave, so I consciously tell myself to turn it off, walk away. I need to put it in a room and lock the door. I don't remember any particular thing, just a dank blur and my head starts to spin in confusion and quease {which is apparently not a word, but should be}.

I promised G an iPhone for xmas and yesterday was the first day I felt taking him to the Apple Store at the mall was tenable. Our trip may have been facilitated by him dropping his phone down the stairs and smashing it, but I had promised, which was weighing on me. So we all went to the mall and lived to tell the tale.

And now I'm sitting on the porch as the day ends listening to a bunch of guys play basketball in my driveway and the little toddler yapping adorably on the porch next door which reminds me of my toddlers and makes me wish I had a better memory for details.

Life goes on, things change and they stay the same. Move forward, maybe, locking certain things in rooms and learning from others is the best we can do.

Of course, I'm moving forward with my Vitamix which is making fruit and secret ingredient smoothies that my kids will actually drink. Today's secret ingredient was celery, so my eldest ingested a vegetable painlessly, unknowingly, which causes me great joy.

My smoothie was a thick, very dark, intimidating green and quite good. I pulverized romaine lettuce, celery, ginger, half a lemon, parsley an apple and a handful of almonds. I'm working myself up to kale, I still find it too frightening, that stuff looks like it wants to bite you, but I'll get there because we're moving forward, right?

Monday, April 16, 2012


I have a whole week without a medical appointment, I can kind of sleep on my side, the weather is beautiful and the boys are on school vacation... need I say more?

Sunday, April 15, 2012

Violent Vegetables

I missed the Cowboy Junkies but I got to see David Sedaris last night and the entire auditorium spent an hour laughing themselves silly. I so appreciated the chance to laugh and have always so admired his gift for smooth, rhythmic well constructed story writing. He's great live, totally endearing, so if you ever have the chance, go, go, go, unless you're easily grossed out or offended and then stay, stay, stay home.

And I surely do agree with his policy of fining autograph seekers $1 if they say "awesome". Sadly, it's making me realize how often I say "awesome", I think it's time for many of us to hit the thesaurus.

I'm reading my VitaMix handbook and it says "if food is violently thrown to the container walls, the speed is set too high." I admit, I'm a little intimidated by the Vitamix. I think I'll start slowly today with fruit smoothies. I'm a tad disappointed that the makers focus solely on the motor and not at all on the industrial design, that sucker is big and ugly, but this detracts not from my giddy with excitement. I have a beautiful Rag & Bone Bindery blank book that I'm going to use as a smoothie journal. I'm all set.

I realized yesterday how lucky I am that there's only one person in my whole wide orbit that looks the other way when they see me coming and if they get trapped into acknowledging my presence they speak to me in a hushed, catastrophic tone "how are you doing?" they'll whisper tragically. Holy moly, I'd have put my head in the oven if everyone treated me that way and the contrast of their attitude to all the others I meet, has made me realize how brave and strong everyone around me is. Everyone's willingness to look my bald self in the eyes, to laugh at my inappropriate jokes and to just be so damned present. You people have sustained me. And the people that haven't forgotten me while I'm in the cancer cave, who continue to send cards and reach out, lifesaving. Everyone keeps asking me what I need and really, that's all I need right now. When you've been house bound and helpless, being self-sufficient is a glorious thing. So while I can do my own shopping and cooking I'll happily do it! It's not easy having cancer, but nor is it easy having a friend with cancer, please know that I know this.

A few days ago I heard Terry Gross interviewing a famous poet I'd never heard of who said something to the effect of -- pain is inevitable, sorrow is a choice.

Wednesday, April 11, 2012


I have to admit, I've been avoiding Young because every time I see her she says "cancer all gone yet?" "No, cancer not all gone." "{insert shocked sound} what? why not? why cancer not all gone?" And that's as far as I can go with that.

Today Young is on the Chinese herb bandwagon and while I believe in Eastern medicine, now's not the time for me to go there. How would I know which herbs can be mixed with which chemo drugs and there's already too much toxicity in my life. I wish I knew more about Chinese herbs, what I do know is that they can be expensive and they taste god awful {way the hell worse than a green smoothie}. How does one tell a brilliant Chinese herbalist from a snake oil salesman? I'm gonna go with chemo and organic green food. My brother, who is coming in from Denver tonight, owns several coffee bars so there's a wholesale, industrial Vitamix blender en route to me at this very minute.

I came home from physical therapy and Young was microwaving sweet potatoes, you never know what Young will be doing but it's usually something other than cleaning.

So it seems there will be a lot of PT and home exercises. Stretching this way and that, slowly, carefully to hopefully regain full range of motion. I'm bad at establishing new routines and right now I'm adrift due to no routine, so I think I'll do the exercises before I get in the shower and when J is doing his homework, then he can remind me and feel like he's helping me. The therapist said I'm in pretty good shape for two weeks out from surgery. I guess the issue is scar tissue impeding muscle movement and also nerve damage and it's all completely expected and normal. They also take this Lymphedema thing pretty darned seriously, I have to go to Cranston and buy a compression sleeve for my arm which I can wear all the time or just when I'm on an airplane... I opt for just on the plane. Cranston is also where you get prothetic bras. Oh Cranston, you are such a special place.

Years ago when G had hordes of friends sleep over more weekends than not, they inevitably watched Lord of the Rings and one time one of the boys asked "where's Legolas?" and someone else said, in thick, fake, Rhody accent "he's in Craaaaaanston." It was one of those perfect, spontaneous, hysterical moments and for ages, out of the blue I'd ask Griffin "where's Legolas?" "He's in Cranston." Now I'd be happy to go off in search of my compression sleeve if Legolas was there to greet me! Sadly, when I try this now, the large one says "mom, that is so old, it's not funny, please stop." But I still think it's funny because kids grow up and move on and parents live in the past where things are still funny.

Tuesday, April 10, 2012

It's Nice to Share

You know... I wish they'd just tell you everything up front. No matter how many questions you ask a doctor they'll never tell you the things you really need to know. Call me naive, but I thought my wound would heal and I'd be recovered, I didn't realize my arms would hurt as much as my chest and that my range of motion would be severely limited. No one told me about nerve damage or physical therapy, that in planning my time, I should be penciling in lots of PT. It's not like I didn't ask what I should expect.

Many years ago when I had my first liver biopsy due to my Hep. C, my {former} doctor told me it was no big deal, you just come into the hospital, change into a gown and they extract a sample with a long needle -- it only takes a few minutes. He neglected to mention the I.V. and that after the biopsy you have to lay on your side in the recovery room for three hours and that they won't let you leave without a ride home. I could have easily planned for someone to pick up kids at the bus-stop, but I didn't know I needed too.

I feel like medical folk communicate like my teenager... if you don't ask just the right specific questions, no one's gonna give up the info. It adds insult to injury, it really does and makes life much more difficult. These keepers of the medical information should be a little more willing to share.

Monday, April 9, 2012

The Sentinel Node

Years ago, when a woman had a mastectomy they just went ahead and scooped out all of her lymph nodes. This was a bad thing because lymph nodes fight infection and without them the tiniest cut on your arm can become serious business and being sans lymph nodes leads to a horrible affliction called Lymphodema where your arm swells up to the width of a basketball.

Now what they do is take the "sentinel nodes" to biopsy. The sentinel nodes are the first ones foreign matter {like cancer cells} would reach on their way out of the breast. To find these guardian nodes they inject a radioactive substance into the breast before surgery, and when they open you up they use a hand held geiger counter to find where the radioactive material has landed. To be double sure, when the surgeon is in there she injects blue dye which also gets caught in the sentinel nodes. Then they take the nodes that are "hot and blue". Usually folks have 3-5 sentinel nodes, but I apparently had just one, big, bad guardian node which is now on the scrap heap.

I wonder how people come up with this clever stuff. It sounds so crazy, but then someone says "yeah, good idea, let's try it," and it becomes standard procedure.

I have a hard time wrapping my mind around the fact that my breasts were delivered to someone in a jar, bag or box to slice, dice and examine and ultimately throw in the incinerator. A job like this is so far from my reality, It's just surreal to me, the whole world of medicine, especially hard-core medicine like cancer treatment. We are all made of different stuff, that's for sure.

Saturday, April 7, 2012

Fate, Love, Learn

I was lucky enough today to see a preview performance of Brain Storm at the Carriage House Theater on Duncan Ave. {off N. Main Street}. It's a dance, multi-media piece and the best thing I've seen there yet. It will be there the next three weekends and I really recommend it to anyone local {or semi-local}. Brilliant and entertaining, they really outdid themselves with the multi-media aspect of things. J especially liked the part where someone portrays what it's like to have a stroke, he found it "very interesting".

A character in a wheelchair, resulting from a brain injury said "you have to learn to love your fate." How much does that resonate for me? I will remember that line, I'll repeat it like a mantra. Thank you Everett, you provided a grande first, post-surgery outing for me.

It's hard to go out, to run into people who haven't seen me since I became cancer-girl. I don't want to be cancer-girl anymore, but I have to learn to love my fate.

Friday, April 6, 2012

Long Tall Sally

I admit to feeling blue today, maybe it's my bizarre tumor or maybe my color coincides with the arrival of my mother. Very loud television puts me on edge, I think I have sensory issues, atmosphere is important to me -- the t.v. can't be too loud or the lights too bright. I want my house back, I want my life back.

My boys are home and so happy to be here which makes me happy. I had the strangest sensation today, as I walked up to the bank, I felt like I was 7-feet tall. Not in the, I-feel-so-good-it's-like-I'm-seven-feet-tall way, but, literally, seven feet tall. I felt like I was seeing things from a higher perspective and I felt myself walking on really long legs, which makes no sense considering how slow I was going. The feeling lasted all the way home. I have no explanation.

I'm touched beyond words by all the sweet and thoughtful folks leaving things on the porch and sending packages. Small things go a long way, they really do. I feel like I'm getting isolated, like if I don't leave the house soon, I may not, so I'm going to go into the shop and be at the farmer's market for an hour or so tomorrow, I'm making myself, and then to a preview performance at the most special Carriage House Theater just a hop down the road.

There is a legion of lawn waste bags in front of my house, packed by most cherished R who came to stay with me earlier in the week. He spent 3 days cleaning up my yard and doing battle with some ornamental grass that was too much to ask of anyone. I hope I would be, or have been, at some point, as generous and kind as so many people have been to me. Note to self: be that way.

Thursday, April 5, 2012


With all the research I've done and all the doctor's appointments I've had, how can I have not known that Triple Negative tumors are unlikely to metastasize to the lymph nodes. Turns out, they prefer haematogenous spreading... which means they metastasize via the blood stream to distant sites.

This makes me unhappy. I thought the only way the little devils got out was through the lymph nodes. Now it appears that the fact that my node was clear is practically irrelevant. I got a copy of my pathology in the mail today and my tumor got a Nottingham Histological Score of 9/9 which is the worst score you can get. It means the cells are dividing rapidly and are as malformed as possible. My tumor had "prominent nucleoli, exhibiting marked variation in size and shape, occasionally with very large and bizarre forms."

Oh joy, I've not just been growing a malignant tumor, but a bizarre one at that. In all my pregnancies my placenta's were described as bizarre and they all ultimately failed. I often feel like I don't know how things work -- jobs, structures, business, what comes naturally to some people always baffles me. In first grade I didn't understand the difference between lunch time and snack time... I didn't know what I was supposed to eat when {didn't realize it didn't matter}, I used to fret over how everyone else seemed to know where to go and what to do, while I just followed along trying to blend in and do what everyone else did.

And now I learn that my cluelessness isn't just external, it's internal... my body doesn't know how to work. It didn't know how to grow placentas the way everyone else does and then it goes haywire and starts growing a bizarre creature in my breast.


All Clear

Clear as a bell, clear as day, clear like my lymph nodes.

Just heard from my doctor that my lymph node was healthy and cancer free, this is truly great news. Maybe the tides are starting to turn.

Wednesday, April 4, 2012

Pendulum always swings

My post surgery, so happy to have that behind me exuberance is turning to fatigue and anxiety. I'm realizing how long it will really be for this giant incision to fully heal and it was a bit shocking and strange to see myself in a sweater... the way it just hangs.

I need to get off the narcotics I think, so blissful at first and then so quickly they turn on you. I've been having post-apocalyptic dreams every night which are exhausting and disorienting. My back is starting to hurt because I can't lie any other way, I'm dying to roll over and sleep on my side, but I think that will be a while.

Yesterday, I had the worst itch on my left nipple, but I don't have a left {or right} nipple, so there was nowhere to scratch. It was maddening, one of the worst physical {mental} sensations I've ever felt. Luckily it didn't last too long or I might have just started screaming, it was that disconcerting. I think it activated my anxiety generator.

Now that the drains are out, I'm swelling a bit, I know my body can reabsorb the fluid, but it's uncomfortable and yucky and I'm counting the hours until my heavenly, record-breakingly long shower tomorrow.

Tuesday, April 3, 2012


When I said I needed a surgery vacation I was being spot-on serious, not sarcastic, not ironic, and I was right. Believe it or not, I'm having a great time in mastectomyville. I'm sleeping and relaxing and visiting with friends, watching movies and walking around my yard.

I am a supah heelah, and had my drains taken out today, although my enthusiasm was diminished by the awful, horrible news that I still can't take a shower until Thursday, to give the drain holes a chance to seal up.

Next week I should have a pathology report and would be thrilled to find my lymph node was clear, then I could feel the tide turning.

Monday, April 2, 2012


I'm uncomfortably skanky at this point. I'm seeing the surgeon tomorrow and if all goes well she'll remove my drains and I can shower, shower, shower and shower again.

when I was leaving the hospital I realized that my hair was growing. It feels all soft and downy, but my head is looking like a styrofoam ball and at some point I suppose I'll look like a skin head. I'm not quite ready for hair, it seems like something else to adjust to.

I'm still healing really well, I've decided I'm a super-healer, an amazon, goddess, warrior, supersonic healer. I'm curious how many stitches I have, but I'm not counting them, don't think I could if I wanted to, some are too far over on the side. My beloved vicodan has started giving me nightmares, I hope the doctor will give me new drugs tomorrow.

Sunday, April 1, 2012

Six Minutes

Six minutes to the season premier of Game of Thrones. I have Griffin here with me, we have chocolate cake, we're all set.

I survived the second exasperating visit of the slow motion visiting nurse, let's hope I'm done with that soon. I had a nice day of visitors and feel neither better or worse, but since I didn't come home feeling all that badly, I'm fine with that.

I hadn't planned on looking at the scar just yet, but I did yesterday and it didn't upset me. It made me nauseous because it's 16" of yuckiness, and I'm squeamish but I can tell the surgeon did a really good job. It didn't make me sob... omg, gotta go, it's 9p.m.