Sunday, September 30, 2012

Bacon Cancer

A weekend of napping has done me good and I’m grateful to all who’ve stepped up to help after my little on-blog nervous breakdown. I’m looking forward to getting lots done this week. Never a dull moment, I’m starting to get sore from radiation and the expensive radiation burn cream I mail ordered may or may not be the cause of the itchy, bumpy, yucky rash on my chest. I don’t think it’s from the radiation... they’re not doing that area and it shouldn’t cause a rash, but I’ll see the radiologist on Tuesday.

I keep chuckling about the best part of going for coffee with my rads girls, the lovely women I met in the radiation wating room. We gabbed like crazy because my god, there are some things you just can’t talk about with anyone and it’s so good to hear about other people’s experience in this surreal dimension in which we dwell. I don’t know if “good” is the word, or “cathartic” or “beneficial”, it’s just desirable, I suppose, and helpful in intangible ways. We jumped maniacially from one topic to the next, two of us did shots of wheatgrass juice, yes, I’m reduced to green shots now. We talked about diet and what we could eat during chemo {varied widely}, foods we like but don’t eat anymore or don’t like anymore, dry mouth and dead taste buds and one woman, I can’t remember the context in which this came up, mentioned that she doesn’t like bacon, never really has.

One innoculous statement can change your life, because there’s been a little part of me that was convinced I’d given myself bacon cancer. Bacon is my favorite really-bad-for-you food. If I go out to breakfast, I get bacon and eggs, my favorite comfort meal is pasta with bacon and sundried tomatoes, sure it’s great with olives instead of bacon, but bacon is the king of tasty treats. And sure, I’m well aware of how bad it is for you... pork some say is a cancer culprit, and animal fat, chemicals, all those nitrates... So I’ve been feeling guilty about every piece of bacon I’ve ever eaten in my life, but no more... because Ms. X has TNBC and doesn’t eat bacon. Phew, what a relief. I know at this point it’s to be avoided, but I will still eat occassional bacon without feeling I’m committing suicide. Life is indeed short and sometimes it needs vermicelli with bacon.

Wednesday, September 26, 2012


I tried to help little boy with his math homework, the other night, word problems, does anyone not despise word problems? It’s funny how we don’t notice things until they’re gone. You notice the absence of a building just razed when you see the empty lot, but can’t recall what was there even though you knew it well enough to notice spot on that it was gone. The moment someone paints their house, you can’t remember what color it used to be even though you’ve passed it a thousand times. I read the question, once, twice, again and again but the little elfs in my brain that prompt cognition, that sift through the files for the applicable flash cards just weren’t there. No organized thoughts, no clues on how to proceed, I might as well have been reading Russian, I was acutely aware that whatever process that used to take place, wasn’t happening. I don’t recall exactly what used to happen... but it sure isn’t happening now. For the life of me, I couldn’t do sixth grade math. My mind is blank when I need it to do something specific, and when I want it to be calm it spins with worry and will not stop.

This morning the cleaning lady showed up unexpectedly, I thought it was next week, so the place was a mess and no time to pick up. No school today, yom kippur, everyone was sleeping but me because I needed to eat, shower and go get microwaved. Our new tenant and family member and J got up, I gave them cereal and strawberries. It must be terribly hard to move in with a family and make yourself at home with a shared kitchen. So now I'm worrying about 3 people eating instead of 2... and I'm worrying about my undone taxes because it's almost a new year and the thought of having simultaneous piles of paper to sort is really too much... and I'm worrying about Craftopia in November and the email telling me that my recently submitted Ad was the wrong size and none of the food trucks are calling me back, and I'm worrying about the shop and will vendors bring me promised merch... too many are not returning emails, I don’t want to be a pest, but I’m pestering and it’s not even working... and I need to build a wall in the studio for the store... and I have a meeting at noon, and Ex is also picking up the kids at noon... and my grill is out of gas and no one is placing wholesale orders and there’s too much cancer in the news, and, and, and... and, I'm sleepy, just god awfully sleepy... I got myself so stressed thinking about all of this that while in the shower my whole body started to itch it was the weirdest, most awful sensation. I need a drink, seriously, I need a fucking drink. The neuropathy in my feet isn’t going away and I can’t find any comfortable shoes, my feet do not want to be in shoes, it makes them scream. And there are all the phone calls I need to make and arrangements for document transfers for my appt. at MGH in Nov., and November is getting closer and who's going to go with me? too much thinking, too much worrying, and Jonah still can't remember his multiplication tables and everyone has too much homework... and I need to refinance the house, but who the heck has the best rates?

And I’m god damned sick of sticking out like a sore thumb. My hair will grow back eventually, but I’m sick tired of waiting and looking like a freaky clown. And the rest of me isn’t going to grow back, I’m so covered in scars and divets I’m starting to feel at the point of no return and really, there is no return, so maybe that’s just the sound of my denial cracking.

Life just feels too complicated, too chaotic, I can’t figure out how people manage, there’s always too much to do and I can’t even seem to get my laundry put away. One step forward, two steps back. I’m heading towards the precipice and backing into it at the same time. I’m doing the exact opposite of creating an environment that is not conducive to cancer but I don’t seem to know how to do otherwise. I feel like my whole life has been conducive to cancer. I just can’t figure out how to live and make it work or maybe I just can’t remember.

Monday, September 24, 2012

Wake Up

I took a carload of boys to a wake tonight, one of their football team member's dad was accidentally electrocuted, he was 50. I found out about it at the game on Saturday, it’s been creeping under my skin ever since. I never met the man, but word of death is jarring. They had a moment of silence before the game and I thought, that could be me and I don’t want a moment of silence, god damn it, I want an hour of silence, a day, a month a year and at the same time I don’t want anyone to be sad because that makes me sad. There’s no connection between this sudden death and the death I fear, but it’s got me on edge, seeping in the cracks. Going to the wake didn’t help, especially combined with my fatigue and my inability to get to the grocery store or feed anyone properly, it all adds up to overwhelmed. It’s almost october and I still can’t get my taxes done and soon there will be a new year’s worth of paper to sort and I’m not sure I can dig myself out. And then there’s the studio, the business, the wreckage of that needing to be resurrected which seemed possible a few weeks ago, but my daily stint in the microwave is making my head bobble with fatigue.

I’ve taken in a boarder, he moved in yesterday, I’ve toyed with the idea for quite some time. Our third floor dweller is a sweet and gentle, 27-year old, dreadlocked man who is Jonah’s improv teacher. He’s been on his own, I believe, since he was a teen and crashed at this place and that. A recent breakup left him once again with no address and I have empty rooms in my attic to trade for yard work, childcare and a nominal rent all of which I desperately need. G was very upset at first notice, and I was worried, but last night they bonded over televised football. J and I sitting in bed upstairs, were amused to hear them laughing and howling nonstop and J gave me a thumbs up and said “I think everything is going to be fine.” I threw in “the more the merrier right?”, and he said “so true, so true.”

So now I think I’m the only one having trouble. Already it’s been helpful, having him here, I was able to go to this wake tonight leaving J home in good hands, sans the stress of figuring where to take him while we went, and wondering if I’m imposing and worrying because it’s a school night. Instead they were happily plotting chinese take-out when we got home and took off for a walk to get it and then sat in the kitchen chatting it up with their szechwan chicken wings and rice. For someone with no extended family nearby or childcare help, ever... it’s an amazing thing for someone to relieve me of that for an hour or two, countered unfortunately, by the stress of having someone in my house.

This house has been my sanctuary and I’ve allowed my perimeters to be breached. But I guess we do what we need to to get by. So far it feels really strange and awkward, and so it turns out I’m the one least able to handle change. I’m feeling less adventurous today than I did yesterday, even less so tonight than I did this morning.

Thursday, September 20, 2012

No Reason

So long eyebrows, sheesh, just when I think I’m done shedding. Cancer provides one with so many new experiences and much new knowledge, like what it feels like to be without eyelashes and what myriad purposes those little buggers were fulfilling, all while you didn't notice. When I blink, I feel like I’m over-blinking... that without the lashes as stoppers, my top lid droops a tiny bit over the bottom causing a slight burning sensation and tearing. Who knew? It’s quite unpleasant. Just as my head was paler than my face, being used to being sheathed in sun-protective hair, so too is the place where my eyebrows were, making me look somehow in reverse, a negative, 35mm.

I really lucked out with my 9:30 radiation time. My appointment is sandwiched between two lovely women who are similar in age to me {o.k.,I admit, a little younger} and have, not only the same type of cancer as I do, but the same oncologist. They see him at a different hospital which is perhaps why our paths never crossed. We all have the same first initial and are having coffee next week to talk about things like eyelashes falling out and oncology gossip. Anyone who says things happen for a reason can fling themselves on the nearest sword because one of these women, who seems so gentle and kind was diagnosed right after having her second child. So while she was supposed to be revelling in that lovely, new baby time, she finds out she has cancer and starts chemo. The other is a feisty, firecracker with kids both 9 and 11 and a husband who’d been battling Multiple Myeloma, a very serious, bone marrow cancer for several years, when she was also diagnosed with cancer. That shit don’t happen for a reason. He’s currently taken a turn for the worse and she’s trekking to radiation every day and then going to see him in the hospital and then home to the kids. No sir, no reason for that!

Monday, September 17, 2012

Wall to Wall

What the hell? I’ve been out of chemo for weeks and today all of my eyelashes fell out. They felt really itchy and when I rubbed my eyes, all of my lashes fell out and they’re still itchy, but now they’re naked too. I’m only one week into radiation and I’m having a devil of a time getting out of bed in the morning and today I konked out in the afternoon for two hours just after promising to do something fun with J. I’m no fun.

I had a really productive week in the studio, it was lovely, and I have two boxes of merch packed and ready to go. I don’t want to have my newfound energy radiation sapped, but I guess I have no choice, so I’m trying to get as much done as I can as quickly as possible.

October is always really hectic for me because I’m getting the store together and preparing for Craftopia. I worry about whether the people who have promised me work will come through and this year I’m expanding so what goes where and how do I partition off from the studio? I need a half wall and someone offered to build me one and I said “oh no, that’s way to much to ask”. And then I realized what an idiot I am, because I didn’t ask, they offered, unbelievably generously offered, so I might track them down and well, I can’t batt my eyelashes at them, but I will ask if they’re still willing.

Saturday, September 15, 2012


My whole week is generally consumed with making lists of all the things I need to get done over the weekend, the things I’m going to stop putting off. Residents of the list weigh heavily on me and then come saturday, my mind’s tabula rasa and I can’t think of what I needed to do which is why the list gets longer every week. I write lists, of course, but then I loose them, they go to the place where sock mates go. I bought a refrigerator applique that one can make lists on with dry erase markers, which was working great until my marker dried out and I keep forgetting to buy a new one despite how many times I’ve been to Staples, I’m sure it’s on one of my lists.

This morning I couldn’t get up. Little boy spent an hour intermittently trying to rouse me, but I felt drugged, I could barely open my eyes. Finally at 9:30 his father came to pick him up, it’s his weekend. This is why I wish his weekends started on Friday night because then I could’ve spent an hour sleeping instead of an hour wracked with guilt trying to get up. And if his weekends started on Friday night, they’d end on Sunday evening instead of Monday morning and the tall one would be home to drag out the heavy trash cans for pick up. It would be a small and quite logical shift, but I can’t seem to facilitate it happening, I am a poor negotiator. I have this irrational notion that when you have cancer, you shouldn’t have to drag heavy trash cans around. I think Susan G. Koman should spend less time worrying about pink ribbons and more time worrying about my trash cans. And I should spend more time eating healthy and making green smoothies because with the return of my appetite, I’ve been slacking.

After breakfast I did the dishes clad in rubber gloves as always and I felt a sharp stab in my pinky. I pulled off the gloves and an ugly black spider slid right out and down the drain after apparently biting me. There aren’t poisonous spiders in Rhode Island, are there?

My precious free day and I don’t think I’m off to a good start. My kids have monday and Tuesday off, I got out my calendar and counted... they don’t have a full week of school until week #8, how insane is that? How do people with full time job’s manage? I guess they build an infrastructure that can handle it, babysitter's on call... I am lacking an infrastructure.

Thursday, September 13, 2012

Three Down

Fuck the saran wrap, fuck the gauze and the tape and the wild machinations just to shower. It’s so easy for a hospital crew to tell you not to shower for eleven days, but real world, just not tenable. Thanks to Al Gore and that wonderful world wide web of internets, my research concludes that it’s important to keep the incision from this type of procedure dry for 48 hours, then one may feel free to remove bandages, and the “steristrips” placed by the surgeon {fancy looking tape} will come loose on their own over the next week, and then you’re all set, bravo! The dissolvable stitches {my nemeses} are subcutaneous and the surface of the incision is glued closed and can get wet and breathe fine, fresh air after said steristrips have fallen off.

I finally had my first radiation the other day and I’m finding the whole experience disorienting, depressing and dehumanizing, triple D, it’s easy to forget that these people are trying to help me. It feels from a Margaret Atwood novel, we get an ID card with barcode and scan ourselves in, then change into our assigned starchy johnny, I’m #33, I retrieve it and return it to a cubby on the wall and it’s washed {I’m told} once per week. My johnny is ill-fitting and drags on the ground, but after stowing my clothes in the cubby I emerge in the next waiting room where at least there are trashy magazines. On Mondays there will be blood drawn and on Tuesdays, I’ll meet with the doctor, and Monday through Friday, I’ll wait until they fetch me to go into the cold room and lie on the cold table. I’ll raise my right arm over my head and lay still while they adjust me and finally zap me a few times with a machine that is disturbingly low tech in appearance. It looks like an amateur inventor put it together in their basement or was ingeniously constructed from spare parts a la Dr. Who. On the first day they gave me two small samples of Aquafor to put on my skin along with a coupon for a dollar off a future purchase, thank you medical/pharmaceutical industrial complex. No one mentioned that there is actual radiation burn cream one can purchase on-line which may do a better job, this is why cancer patients need to stick together just like new moms, because there is so much the books and the professionals don’t/won’t tell us. The actual patients, I think, are so often an afterthought.

I’m feeling battered and bruised {literally}, my incision hurts and I’m surprised that the radiation area is already a little sore. Three down, thirty to go. I finally had to put my beloved messenger bag away, there were just no shoulders left to carry it on comfortably. Luckily I had a posh fuscia leather bag with a handle in my closet made by Holly Aiken in North Carolina, a fab internet find. But as I’ve mentioned her I must give a shout out to my favorite local messenger bag makers, Little Man Originals and Red Staggerwing Designs.

It’s a beautiful day today. I got into the studio, I finally got to the grocery store and little boy is happily ensconsed back at improv class. I hope more kids show up next week or there might not be an improv class to go to, and that would be worse than giving up my messenger bag.

Monday, September 10, 2012

No Boobs, No Balance

I forgot to mention that while at the aquarium yesterday, I held the door open for some folks leaving the penguin house and one of them was wearing my earrings! I have to admit, it's always a thrill to see someone wearing my jewelry where I least expect to.

I'm still a radiation virgin. It turned out my first zap is tomorrow, today was more x-rays and blood work. More laying on a table half naked in a freezing cold room, like a piece of meat while people push and pull to arrange me just so. Lots of waiting and not moving and technicians bustling about, drawing on me with markers, and taking pictures. The rooms with the fancy machines are always freezing because it seems the machine's need it so, we are mere accessories so the machines and everyone else have something to do. I know that's not true, but that's how it feels, western medicine is very dehumanizing, they treat everything but our brain and as informed as I try to keep myself, I often have no idea what the hell is going on... how the system works. As fidgety a person as I am, I've mastered becoming a statue, I leave my body, and barely even remember being there.

In the changing room, I met a woman who also had triple neg. and who has two young kids and who's husband is in the hospital because he's been fighting some sort of leukemia for a few years. Unequal distribution of misery. I felt really badly for her. She has the appointment right before mine every day, so it will be interesting to compare treatment notes.

I'm exhausted from the weekend, truly and utterly and today I had to drive an hour and be on my feet for a couple of hours and my feet were screaming. My balance was terrible, I'd just be standing there and then suddenly loose balance like someone bumped into me, but no one there. It happened a lot yesterday too, no likey. I think this definitely rules out the full-time job at McDonald's opposing counsel suggested in early divorce negotiations. The boobs ain't coming back, I hope the balance and working feet do... and the vision... and the energy, this could be a long list and little boy is waiting for popcorn and Dr. Who.

Sunday, September 9, 2012

Train Tracks

I had a really nice weekend, I forced myself to get out and about, as enough is enough with this shut-in thing. I went to G's football game on Friday night and while he played well, they got creamed by a team in a lower division, which makes me nervous for the rest of the season with even bigger, stronger, faster opponents. There were a couple of late hits on him and they made me furious, I wanted to go out on the field and scream at people, kick them in the leg. It is horrible, watching your baby get knocked down, knocked down on purpose, oh, why not tennis? When he got home, his arms were all scraped up and raw and bloody, ewwww.

On Sat., J had a friend over to help him make a movie he's been planning for weeks -- for some reason, he got it in his head to make a silent movie, "old fashioned looking". They did a great job, I have to say, I love the part where his friend is tied up on the ground as if on a train track and there's a close up of the train coming and then a wide shot that shows the tiny little Brio train approaching . Tighter editing would be nice, but I keep it zipped, he's so proud of his movies, as it should be! We stayed up way too late as usual, J editing and G and I watching some of the convention speeches.

Today, J and I and friends went down to the Mystic Aquarium, it was really fun, but exhausting. I wore sneakers for the first time, it's been flip flops for my beleaguered feet all summer. The sneakers made me more aware of how numb my feet are and I'm finding that when it's dark, I have little balance, I look drunk. By the end of the day, I was just plain in pain, I don't know what kind of shoes to get for winter. I fall off my dansko's, I think I need to be really close to the ground. It was so nice to finally go on an adventure with J who kept holding my hands and raving on and on about how much he loves sea creatures and at one point he was so happy, he had to give each of us a hug. And yeah, then we all got the speech again about how hugs are healthy for you... endorphins, you know?

Tomorrow is my first radiation, yet another odyssey begins. Five days a week for 7 weeks, oh boy, can't wait. What's really abnormal is how normal it seems, I'm really not sure what I'll do when I'm finally out of treatment, it will feel as strange as getting diagnosed in the first place which really seems like years and years ago, as opposed to the 10 months it's been. It's hard to imagine my former life and kind of wish I'd realized how simple it really was.

Wednesday, September 5, 2012

News Flash

Ah, last day shuttling about in the old jalopy, I had to laugh when the "check engine" light came on... and stayed on, that warning will stalk me no longer.

I'm more sore today than I'd expected, the incision is right where the seatbelt comes across and where I carry my over-stuffed messenger bag. I hope it heals quickly, but now that I'm not a super-healer anymore, who knows. I do know that advil is my friend.

I haven't watched any of the Democratic Convention yet, I taped it and went to bed, but G woke me up at around 11 to say "Michelle Obama was amazing!" I don't mind being woken up for that news flash.

Tuesday, September 4, 2012


What do you do when your friendly neighborhood middle school librarian sends you an unexpected email telling you she loves researching and buying cars? You say, yahoo, let’s go. We drove a Toyota, Honda, 2 different Kia’s and a Suburu, and armed with her consumer reports, experience and advice, I got a great deal on a Toyota. Yep, a brand new, pretty, shiny Toyota Rav4. So you wind up with a new car and a new friend. I didn’t expect to buy a new car, I’d totally talked myself into used and made peace with it, but the savings on a used car just wasn't enough to make it worthwhile. And as the year is almost through, I wound up with a better deal on a new car, than some dealers were offering on a used. I’m giddy with excitement, and can’t wait to pick her up on Thursday. I figure anything that makes me giddy right now is worth the expense and as I don’t generally crave material items, I went for it. I’ve been longing for, craving, fantasizing about having a new car for years and after driving my poor second hand van for 11 years and to the bitter end, I am well past excited about my new baby.

Today I had my port-removal surgery. Everything went smoothly, but I’ll admit to being tired of these procedures and feeling like a piece of meat on a table. The drugs were great, I was in a very relaxed place but never fell entirely asleep. I heard the staff talking about where they buy appliances from underneath the drape that was covering my head, as if I was in a tent that had collapsed. They told me not to shower until I come back for a follow up in two weeks, which I'm interpreting as, no worries, shower in the morning as usual. I came home and passed out into many hours of sleep while J spent the afternoon next door and G was at practice. Pizza delivery for dinner and looking forward to getting my pumpkin head back into bed.

I start radiation next week, so there really is little rest for the weary. I got a good time though, 9:30 a.m., not everyone is so lucky. I can finally get into a routine of kids off to school, breakfast, shower, radiation, studio, home for lunch and J return.

Somewhere in there, I’ve really got to get to my taxes and catch up on other areas of neglect. Mostly, I need to go somewhere fun this weekend in my new car!