Haze and Laze

I can't open my refrigerator, but I can type! All is well, I'm uncomfortable, but not in any kind of excruciating pain. I am thrilled to death that my surgeon only took one lymph node, and hopefully, the pathology on it will be clear. Everything has gone really smoothly.

I'm grateful to the last minute advice from a friend of a friend who just had the same surgery, that I really should have someone at the hospital with me, because that turned out to be very true. Luckily my sister came down from Boston with little warning and that was a big help, considering the comedy of errors that is an overnight stay at this particular institution of higher healing.

There was an endless stream of nurses and CNAs telling me things they were going to do and then going off on their flighty ways doing none of them. The compression stockings to keep me from throwing a clot were brought in, but never put on, they languished on the window shelf. I wasn't at all pleased when they came in with a package of giant swabs and told me they had to swab my anus and my nostrils to test for certain bacteria that if present would cause me to be relocated. Luckily, those stayed on the window shelf too and I'll admit to conspiring with my sister to shove them out of view so as not to offer a visual cue. They told me about the nice warm towels they would bring to wash off the pre-surgical, brown anti-germ stuff, instead my friend Gini who took me home helped me wash it off there, no warm towels.

While I've had my blood pressure and temperature taken countless times in the last few weeks, they weren't all that interested once I was actually in the hospital, they stopped in for this only once or twice. After my sister left, they apparently didn't want me getting up alone to go to the bathroom, but they didn't tell me this, they just set an alarm on the bed, so when, in a dreamy, peaceful vicodan haze, I got up to go, the alarm started screaming and three nurses ran in and I was terrified, thought I was having a silent heart attack or some terrible thing that had set off an alarm, code blue.

Really though, a short and pleasant stay and I lucked out with a private room. I'm home with lots of vicodan and currently waiting for a ditzy sounding visiting nurse who's coming to empty my drains and change my bandages. She asked me what kind of bandages I needed and was disappointed that I didn't have a clue. Am I supposed to know what kind of bandages I need? I was sound asleep when they put them on, I have no idea what's under there.

According to my surgeon, my insurance company was fighting with them until the night before about covering the lymph node biopsy. This is the common and necessary procedure, so it's pretty shocking and crazy that they considered denying it and all the while there are folks protesting at the supreme court because they don't want health care reform, so maybe "crazy" is the word of the day. That and healing, I plan to heal fast, I'm a good healer, heal, heal, heal. One week of vicodan haze and laze, then the drains come out and one week of getting it together and then I want to enjoy the two weeks before chemo starts again. That's my plan, no complications, speedy healing, moving on.

cards

Please send cards and notes of encouragement to the following address:

27 Dexterdale Rd.
Providence, RI  02906

Kim is home now and resting and doing amazingly well. She will be back to posting soon.

Update

Kim is out of surgery and resting in recovery. The surgeon felt the procedure went well and if all goes according to plan Kim will go home tomorrow. I will post an update tomorrow after I see her and let you all know how she is doing.

Don't forget to send pretty get well cards!

Swamp Juice

My friend J is a true believer in eating raw, and drinking green smoothies, he says they changed his life {for the better}. Kale, spinach, avocado, ginger, lemon, fruit, whatever, all power-blended into a frothy green, very unappetizing looking cocktail. After my diagnosis J starting bringing me big jars of these dark green, intimidating drinks on Saturdays, while he was in the vicinity shopping the farmer's market.

At first I could barely get down a sip and then I learned to chug them, and then, lo and behold, I started to crave them. Not in the way you crave chocolate cake, because your senses are craving that -- the smell the taste, the texture, the comfort, it's my body, my cells, craving the healthy green power punch of the swamp smoothy. I think there's a vitamix blender in my future and I'm grateful to J for his persistence. I should also thank T who came at me from the other direction bearing her Green Goddess Juice. Really, my diet and exercise are the only things I can control, so it's best I start.

Today is J's actual birthday and he woke up in a good mood until he realized, and I realized, that I'd forgotten to bake the banana chocolate chip birthday muffins for his class, despite the ingredients sitting on the counter. I hang my head in scrambled shame. He's gone to his dad's now and it was very hard to see him go. The rest of my day has been a flurry of laundry, errands, and my amateur porn shoot to get the breasts documented for posterity. I will probably never look at the pictures, but I would have regretted not having them. Now I wish I had a picture of them from when I was twenty-five.

I could go through every part of my body and find something wrong with it, too big, too small, too this, not enough that, all except my breasts, they are spectacular. Gravity's gotten the better of them but they are still silky, smooth skin with tiny pink rosebud nipples. I've been in my share of locker rooms and they are the nicest breasts I've every seen. I am sad to see them go, but at the same time ready, if you can be ready for such a thing.

The dishwasher is running as is the dryer, the sink is empty, I'm about to put clean sheets on my bed and then shower with the special germ-killing soap I've been given {and again in the morning}, and that's all I can think of to do.

My friend G has my password and will be updating the blog after she hears from my surgeon tomorrow and I'll be home on Friday taking as many pain pills as they are willing to give me. x o k t c

Scramble-head

I'm compulsively doing laundry. I have it in my head that when I come home from the hospital everything must be clean. Clean sheets, clean towels, clean socks, each and every one, clean kitchen, clean bathrooms. I left too many things until the last minute. Tomorrow a friend is taking pictures of my breasts. I may never look at them, but I know I'll regret it if I don't do it... I've known this for ages, but waited until the last minute because I dread doing it.

I was trying to help J with his math homework an hour ago, converting feet into meters and meters into feet and my brain froze. It just goes blank and I freeze and don't know what to do, it's disconcerting. A few minutes later he says "that's o.k., you're just a little scrambled in the head from the chemo." Scrambled in the head, I laughed so hard, I think my nickname should be scramble-head, because it's true. I'm scrambled in the head and soon to be more so.

I hear the clock ticking, I feel like I'm getting ready to go to jail or be executed and I'm not sure what to do with my last days. It's one thing when you wake up in the hospital because you've been in an accident and another to calmly walk in there of your own volition so they can do unpleasant things to you. It seems surreal. I'll send Jonah out the door to the school bus, take a really quick shower using the special anti-germ soap I've been given and walk up to the hospital and check in. I'll go in feeling great and come out feeling terrible, on the surface that seems like a poor choice. I've so desperately enjoyed feeling better these past couple of weeks, I really hate to give that up, for any amount of time at all.

Blood Pressure

My goodness, I simply can't count how many times my blood pressure has been taken in the last few months. It's always the same... always normal, on the low side, which is apparently good. Blood pressure and pulse, blood pressure and pulse.

Found out today during my "pre-surgical evaluation" that I'll have to wear bandages and a "binder" holding everything in place for a week which means no showers. That's like telling a coffee drinker, no coffee or an alcoholic they can't have a drink. Grateful as all get out for being bald, I can stick my head in the kitchen sink and simulate full body immersion.

It's probably good that the bandages stay on all week, likely best to not get a look at things too quickly. I'm trying to get ready, get things in order, bills paid, house cleaned, but really, I'm just wandering in circles not knowing quite what to do.

Happy Birthday

Last night Jonah had the "perfect" birthday party. Three kids, chocolate cake, running around like mad in the yard, and then off to the Carriage House for Friday Night Live which is High School students and all the teachers of the company school doing improv. While I took G and his friends here for years and they loved the shows, they never had any interest in participating. When I took Jonah for the first time not long ago, afterwards he said in a very serious tone "let me get this straight... they just get up there and make stuff up? they don't have a script... they don't rehearse?" "Yeah, pretty scary huh?" "Noooooo, that's the coolest thing I've ever heard in my life, I can't believe they let them just make stuff up."

Jonah is taking his first class there now and I'm hoping it's his gateway drug to more and more theater and the Carriage House is quickly becoming a really special place for him, his teacher is a talented and spectacular presence with the kids. The boys laughed their heads off during the show and at the end the whole cast sang the jazziest, most joyful, rollicking, guitar accompanied, festive, happy birthday to Jonah you could imagine.

When we got home I had a purely happy, contented soul on my hands and before bed he came into my room and said "mom, when it's your birthday, you should go to Friday Night Live, because when they sing happy birthday just for you it makes you feel so special." He has repeated this several times since then and I think I will take his advice.

On my 48th birthday, I was several weeks into my diagnosis. If all goes well, on my 49th, I'll be just finishing treatment and hopefully, there will be celebrating, letting go of a rough year, and joyful abandon.

Reconstruction Disruption

I'm feeling a little upset, my equilibrium disturbed, as it often is when I try to understand mainstream culture. I feel so out of the loop, like I must be unclear on the concept, or just plain really odd because I just can't fathom the way I'm "supposed" to be and feel. I've never quite fit in, I don't get how it works.

Every medical person I've been in contact with {and this is many} is really {really} hot on reconstruction after mastectomy. It's not if, but which kind and when. Which seems straightforward enough until you learn that the options for that go from bad to worse. I want to be really clear, that I have nothing but respect and admiration for anyone who goes through this experience and whatever options they choose. We're all different, we all have our own needs.

I'm not comfortable with implants, with putting a foreign object inside of me, one that will need to be replaced over the years... and the process of stretching out the skin with "expanders" over weeks or months to accommodate the implants, no thanks.

Then there's the Trans Flap which reconstructs your breasts using skin, fat, tissue, and muscle from your belly. This leaves you a belly with few if any muscle, permanent weakness which leads to bulging and hernias which require surgical repair. I would also suspect that without these stomach muscles {which are there for darned good reasons}, your whole core goes off kilter, leading to back problems and one ache and spasm after another.

The newest surgery is called a Diep Flap, this is similar to the Trans Flap but spares the muscles... hopefully. But no worries, if they don't get what they need from the hip to hip incision in your belly, they start taking stuff from your back. It's a 14-hour micro-surgery with a very difficult recovery and on an irradiated breast, the surgery could fail, meaning you lose the new breast and are right back where you started from except all sliced and spliced.

I'm sorry, but this all strikes me more like extreme mutilation, as opposed to "reconstruction". There's no way I'm spending the rest of my life in search of breasts, and I won't sacrifice another piece of my body willingly, optionally.

After convincing everyone I wasn't having reconstruction, which I'll admit, I might have done if I could have done it during my mastectomy -- one surgery... but mine would have to wait 6 months to a year after radiation... I'm told matter -of-factly where to get a prosthesis. No consideration that I might not want strap on fake breasts, pretend breasts. I just can't imagine wearing strap on fake boobs, or why I would want to? There seems to be such an entrenched belief that you are not whole without breasts, it's surreal. There's not a lot of support for someone who doesn't buy into that system. Am I missing something? I just want to be alive, enjoy every minute of every day and it doesn't seem like fake boobs will either help or hinder that goal... where's the respect for my choice?

I'm as vain as the next gal, and if I were in a fire or accident and my face was disfigured, you bet, I'd be having reconstructive surgery, but for a flat chest? It seems extreme, and is instead almost societally required.

I've read stories of women on-line, barely healed from mastectomies, strapping on their heavy prosthetics. They exchange tips on how to bear it and make it more comfortable and it makes me want to weep. There are nightgowns for sale with built in falsies, so you don't have to lounge around your own home, or sleep with a flat chest. Why can't we just be comfortable and natural? It is what it is, be what we will be. Our bodies change regardless. A mastectomy isn't a natural evolution and it's a bit extreme, but we are adaptable creatures if people, if culture, if I don't know who... ourselves? would just let us.

Overdo

Guess I over did it a bit in my spring rapture. By 7p.m. my brain locked and I could barely speak or move... both boys said "you should go lay down", it was that obvious. Little dude kept popping upstairs to tell me everything he was doing and then finally joined me in bed to read, so despite fatigue and aches, a perfect day.

Jonah even woke up cheery today, instead of a groan when I woke him up, I got a cheery wave and hello. I think we're all savoring the moment, this winter was such a freaking slog. Tomorrow holds "pre-admission testing" whatever that is, and a mandatory consult with a plastic surgeon.

J says he can't wait to have lot's of dinner parties this summer in the yard because they're soooooo fun. "We have such great friends" he says {and it's true}, so I hope you're all up for a lot of dinners in the yard this summer!

First Day of Spring

When you're bald you can ride in the car with the windows down and not get tangly hair. I think I'm going to be disappointed when my hair grows back... we are more adaptable than we think.

J will be 11 next week, the day before my surgery in fact, and I remember the weather was like this that year too because I was wearing a short-sleeved maternity dress for some time. When I visited him in the NICU, before I could drive, I remember it being really hot and uncomfortable waiting for my taxis to come, so much so that after about three days I just started driving again. He was a snuggler from the start my sweet thing, I used to go to the NICU and think he was missing from his plastic box, but he was always scrunched down in a little ball inside his swaddling. To this day he sleeps with the blankets over his head and waxes poetic about the glory of comfy blankets. Naturally, G always kicked the blankets off when he was little. Different, but both beloved.

J was seven weeks premature, an emergency birth, and had intestinal surgery when he was one day old and 4.4 lbs. He spent five weeks in the NICU, came home and has barely been sick a day in his life. This boy who I was told I would never conceive and then that he would have a brain impairment {if he lived}, is instead the most articulate, expressive, creative old soul I have ever met. Because of his stomach, however, he couldn't tolerate formula so he nursed exclusively for quite some time and then non-exclusively {of course} for just over three years. So despite being ready to let them go, I am oh-so appreciative of these breasts. They have served me well and I have loved them always, they leave with honor and dignity and may they be at peace.

I've had a near perfect 48 hours. Friends unexpectedly dropping by at just the right time, dinner on the porch, worn out yoga pants shed for skirt, making green, minty milkshakes with whipped cream and shaved chocolate with delighted little boy, weeding garden and 10 bags of mulch laid down today. And no, I could not have moved those bags around alone, I got to do the fun part, spreading it around with a rake. 10 bags down, 10 to go and during my recovery I'll get to sit outside and watch the plants grow instead of suffocate under grass and weeds.

A month ago I was ready to put my head in the oven and today it is such a beautiful day... we are adaptable.

Spiders

I might be the most eager, excited person ever to have a mastectomy. I'm counting down the days like I'm going on vacation, I can't wait. Tote around a sack full of cancer for four months and you'll relate. Additionally my breast hurts like hell and I'm imagining evil little carcinoma trolls marching towards my lymph nodes. Enough is enough, I want to be on the flip side, on the mend.

I have a slew of medical appointments next week and through all of this I've feared only the last two chemos and now, a mammogram on Monday. I'm terrified. My poor beleaguered boobie is killing me, the tumor is hard as a rock and free-floating, I don't know how you squish that in a mammogram machine, it doesn't seem physically possible, I picture it cracking like an egg with nasty little spiders scuttling out. I think some cyst issues have joined in for fun and I'm just ready to dispatch this increasingly nuisance part of my body.

I'm feeling more and more alienated from my lovely breasts and clear that I am more than my cleavage.

There's going to be beautiful weather all next week and between appointments I'm hoping to spend time in the yard, raking out the gardens and giving all the sproutlings room to breathe. While I recover, I can sit out there in my cozy new pink bathrobe and watch them grow, feeling far more relieved than horrified.

Big Switch

Oh Rick Santorum, you crazy momentum gaining thing, I hope you win. If I had a delegate in my pocket, I would give her to you. The delight of seeing you and your sweater vest, one-on-one at a debate with that charming, graceful, smart guy who lives in the white house is almost too much to look forward to. Watching you get smooshed like the little mealy bug you are by someone who is rational and informed and actually understands history and the constitution, popcorn for everyone, it will be grande.

I know it will ultimately be Romney, but a girl can dream. I've been wondering though, what's the deal with Romney's logo? For all his money and consultants, he's got to have the worst campaign poster ever. That strange "R" is so feminine, it could be a contraceptive logo, or some bargain brand something or other. It's such the perfect symbol of his ineptitude, but I can't imagine that was the goal, poor shmuck can't get anything right. Looks pretty darned good for 65, but that's about all one can say about him.

I spoke to the head of oncology yesterday and he was super nice and supportive of my switching doctors. He recommended the guy who is my friend T's oncologist, she says he's a love him or hate him kind of guy, I'm hoping to love him. I'm sticking with mine through the surgery and the lab results and then I'm switching. I'm wasting time and emotion feeling bad about it, I don't want to hurt her feelings, knowing full well I have to learn to care about how I feel above all else, especially now. She's a fine person, and probably a great doctor, we're just not a good match. I really need an oncologist who makes me feel optimistic {and not tempted to start researching hospice care}, and who is direct and clear, doesn't feel sorry for me and is aggressive as all get out.

I had a lovely home-cooked dinner at the home of friends last night. It's so good to be able to get out and about at least a little. I really want to make the most of these two weeks before surgery, before I get clonked on the head again and stuck on the couch.

Sweaty Skull Syndrome

I am learning so many new things. My latest discovery is Sweaty Skull Syndrome. When a room heats up, the first thing that starts to sweat is your head, if you have hair you don't notice this because your hair absorbs the sweat, or more likely, keeps your scalp cool. If you're bald, you don't notice it either until you touch your head and realize it's soaking wet, needing a mop wet, or until it starts to drip down your forehead.

I am having so much empathy for bald men, because let's face it, men are more likely to be bald, I have the luxury of only walking in their shoes temporarily. I'm imagining the bald guy on a first date, a coffee date, sitting in a café at 10 a.m. when the sun starts to shine in the window he's sitting at. Now, not only does he have to make small talk, he has to worry about whether his dome is heating up. You can't touch it because then you have to wipe your soaking hands on your pants and then just go for it with a napkin, wiping it down. You worry if it's sweating, how much? is it obvious? is it going to drip down between your eyes all while she sits there coiffed and cool as a cucumber. You start praying she'll get distracted and turn away for a minute, or best yet, go to the bathroom so you can take care of it. Poor boys, in high school they have to worry about hard-ons and then some of them have to worry about sweaty heads. I salute you bald men, it ain't easy.

The extra indignity when you're a bald woman doing chemo is that chemo kicks you right over the menopause line and you have hot flashes... constantly. So you can't avoid the sunny café window, it follows you around.

Fifteen Minutes

I had 15 perfect minutes today. J is so excited and downright joyful at the prospect of spring. He's been waxing poetic about how nice it will be to sit on the porch and read, not that this is something he's ever done, but none the less. It wasn't quite warm enough today to do that, but he decided to do his homework early {shocking}, and asked if we could go for a "nice" walk up to Cumby's and get an ice cream and so we did. We walked and talked and laughed on a beautiful day and he let me put my arm around him. And, I had the energy to walk a few blocks, small but beautiful thing.

He made me get an ice cream too because J is a fan of shared experience and he was so thrilled that I got one, that I was glad I did, even though I really didn't want one. On the way home he mentioned my surgery and said "you know Griffin really cares about you even though he acts like he doesn't". Out of the mouths of sweet babes. I said "I know", because I really do know, and lately, even Griffin is acting like he cares.

Then he went on to talk about how nice it's been to have so many people helping us out and how people really should help each other out. So people who have been helping us, please know what you've meant to this boy, how reassuring this patchwork community of ours is, it isn't only me who is grateful.

Tests Please!

I opened my laptop this morning and found the inside covered in eyelashes. I can't fathom how chemo works... how it causes something in some part of your body to reach some crazy critical mass, be it eyelashes or armpit hair, to make them all fall out all in one day... weeks and months apart from each other. Why the public hair first and the eyelashes three months later?

Triple negative breast cancer has a 63% 3-year survival rate, if you get that far, you have a 77% 5-year survival rate and once you hit five years your chances go way up. So I wonder, and I was asking my oncologist, how the hell do you get through those five years and what diagnostic methods do they use to determine if you've developed a metastases so it can be dealt with quickly. According to her it's all symptomatic, if my hip hurts for a few weeks, they'd send me for an x-ray while with someone else they'd wait a bit. I'm under the impression that most cancers are not symptomatic until it's a bit late in the game, this is not reassuring to me.

With all the high-tech equipment out there, I want to know once a year or so that nothing sneaky is going on inside me. Oncologist cites statistics that doing scans doesn't change overall numbers, but I'm not concerned with the overall numbers, I'm concerned with me, my number.  I've had every invasive test in the book, one or five more isn't gonna kill me, so I think I need to find an oncologist with a different philosophy. I'm not afraid of the radiation from an MRI at this point, I'm afraid of cancer and I don't like those numbers.

I went for my pre-op physical today and my doctor said that she is going to call an oncologist she knows at the same hospital I'm using because she thinks he monitors more closely. Live and learn, I didn't think there would be so much difference in post-treatment care and monitoring, I figured everything was pretty standard. It seems there's always something new to figure out which is daunting.

On the upside, I've felt more and more awake and functional over the past few days. Actually got a few errands done and now fifth grade homework awaits and it's a little late to be starting homework, so it may not be pretty.

Flummoxed

I'm looking at my calendar and feeling overwhelmed by how much I need to get done in the next few weeks to get my ducks in a row for surgery which is only 2 1/2 weeks away. Here in my parallel, universe, I've ordered my "mastectomy post-op camisole". An "attractive" little garment that includes inside pockets for fake foam boobies {in my case, protective foam cat shields}, but more importantly inside pockets to hold the drains that will be attached to me for a week the contents of which needing to be measured and disposed of. Also a velcro front closure disguised by feminine lace for easy access. A lovely way to spend $55.

If this were a friend going through this, I'd be a great go-to person to devise a plan, a schedule, who needs to do what... I'd know what they needed. But when it's me, I'm flummoxed. I can't foresee how many days I won't be able to care for the kids here, how many days do I have to hit their dad up to have them, where will little dude go after school, so many calls to make and things to schedule. Cancer is a full-time job.

My mind is dense, can't think creatively, can't foresee the situation, I wish they'd just keep me in the hospital. All I can see is the immediate, the tall boy on the floor patiently waiting for pancakes, and even then, I'm not all that motivated.

Bilateral

I saw my surgeon today and she also agreed that a bilateral mastectomy {which is what they call a double mastectomy} was the best course of action at this point. My surgery date is March 29, one day after J turns 11. Between now and then I have endless doctors appointments. Pre-admission testing at the hospital, plastic surgeon consult even though I may choose not to reconstruct, and that can't be done until after radiation anyway, pre-surgical physical, mammogram {last ever}, surgeon {again}.

It will be really good to just get this over with, I'll admit to being nervous, I don't like big ordeals and this counts as an ordeal, I believe. You only get one night in the hospital and then they send you home with narcotics and drains {yuck}, and lots of stitches of course. Then I only get four weeks off until chemo starts up again.

In case you're wondering, because a bunch of folks have mentioned it... while I was hoping for a lumpectomy, that's not why I did chemo. Chemo was the required treatment both before and after surgery, regardless. You probably know someone who had breast cancer, a mastectomy and then was done, or maybe did radiation. There are many different kinds of breast cancer and because of my particularly aggressive type and it's advanced size, it was chemo no matter what. If I'd had a choice, I would have had a mastectomy right off in a heartbeat, but that was never an option.

I talked to the boys about the surgery last night and when later, we were watching a cartoon, J's choice, so that means a bizarre cartoon. One of the grotesque characters was male, but fat, so had boobs {or so it appeared}, and I joked "that guys got bigger boobs than I'm going to have". I thought it was a good way for them to understand, boobies going bye-bye, but they both got so mad at me.

G barked "was that really necessary, I mean really mom, seriously?" "what? I'm just joking", "well that's not funny and it really isn't necessary, can you please stop!" and little dude chimes in "yeah mom, that's not funny." "I'm just trying to use a little humor to diffuse a difficult situation." "Well DON'T".

I was really surprised by their reaction but I guess I'll be more tasteful in the future. Poor guys have a lot to process.

Persuasion

I saw my oncologist today and no persuasion was necessary. She agrees that the time has come for a mastectomy and asap. I'll see my surgeon tomorrow and likely schedule some tests and a date. I'm definitely going for a double, the lone pendulous boob is too horrifying to me. It was a long appointment, lots of waiting, and shortly after I got home and was going to hit the couch I got the dreaded school nurse phone call.

J fell at recess and the nurse thought he had broken his wrist. 3 hours, a doctor's visit and impressive stack of x-rays later, he has a slightly sprained wrist happily ensconced in a small, black, ninja looking, in his words "very stylish" brace.

Me, I'm living in hot flash town. Last few days I'm having them all the time, especially at night, which is keeping me up. Thank you chemo for not shrinking my tumor, but for another lovely side effect.

Hoodie

I went to the bank to make a deposit today and the teller sternly told me to take off my hood. My hoodie sweatshirt hood which I infer makes me look like a bank robber. I would be the slowest, saddest bank robber in town. They'd catch me quick, my chemo brain is not casting cunning plans.

I can breathe much better since the transfusion, but still dog tired. I keep reminding myself that even though I've done my last treatment {for now}, I'm still full of drugs, I'm not even through my whole three week cycle yet.

Rest of the week is full of doctors appointments, so we can yap, yap, yapitty yap about what the next phase of treatment will be.

Persuasion

With my brand new, shiny, hemoglobin, I went to the grocery store today and lived to tell the tale. I haven't been able to make it to the store in at least a month, so it was a small, if somewhat pedestrian victory.

Later today, my event-planning partners are coming over to jury our fine upcoming event, in the back of my mind I know I might not be there, day of, and that makes me sad and worried, because I'm girl on the ground, come event day. Nor will the artist who just recalled her application be there, as she's just been diagnosed with breast cancer -- can you say epidemic? And again, this is not an old woman, this is someone in their 40s with young{ish} children. Luckily her cancer was caught reasonably early and she is smart and savvy with a plan in place, and an excellent support system, who is now, much in my thoughts.

Craftopia is the only part of my business I've been able to keep up with albeit barely, and I have much catching up to do this week. It's my labor of love, much more than a business {because it wouldn't pay anyone's bills} but I'm glad we're keeping the momentum going. In fact we have the best pool of applicants yet and I think it will be our most fabulous show yet, I really want to be there. I'm glad I have partners to keep me from throwing in the towel, plus my partners are awesome, it's so nice to have people you can work seamlessly with, I don't think that happens all that often, it certainly doesn't for me.

Plans are very much on my mind as I have both oncologist and surgical consults late in the week. It seems unlikely that I will be able to have reconstruction along with my mastectomy because I need radiation afterwards. Before radiation, I need 3 more months of chemo, so this would be a long time to be uniboobular and I feel I've had indignities enough. This makes me think a double mastectomy might be the way to go. When all is said and done, I might decide I'm comfortable and don't need reconstruction where if I have a single, I will definitely need reconstruction because I don't see getting comfortable with having only one boob, no way, and I'll be having only that one boob for almost a year, ugh.

I'm thinking that after phase one: diagnosis and a zillion tests; phase two: 3 months of totally debilitating chemo; phase three: surgery and recovery; phase four: 3 more months of chemo: phase five: 6 weeks of daily radiation... I might just be done. I might not be up for another surgery and with the one boob, I'll have to have more surgery. I'm thinking enough might be enough. And who's to say I don't get a different breast cancer down the line? I'm certainly not confident in the diagnostic abilities available as besides the actual cancer, they put me in this boat by missing it over and over {and over}.

More and more women are choosing double mastectomies so they don't have to worry, doctor's don't like it, doctor's really like lumpectomies even when they're not all that feasible. So this week, we'll see who persuades who.

Hemo-a-go-go

Wow, that hemoglobin is powerful stuff, I feel so much better today, I can't believe it. I took a shower this morning and felt awake for the first time in ages, I literally felt my brain pop back on. I still forgot everything I needed to bring to work and subsequently forgot everything I needed to bring home, but regardless, I feel like I got a bum fuse changed.

Most grateful to my benevolent hemoglobin benefactor, to whom I wish I could send a thank you note. I still took a four hour nap after work, but didn't feel like I was going to die from climbing the stairs. The boys are at their dads, so when I got up, I could scrounge around the fridge and watch TV or get dressed and get out and I did. I forced myself and I'm so glad, I can't remember the last time I went out in the evening, so I took my iPad out on a date. We sat at the bar at Chez Pascal where my friend D is the bartender and had a small and lovely dinner. Coincidentally some friends came in for dinner celebrating a birthday and anniversary, so I joined them for a visit after I ate and it just did such a world of good for me. Spending time with real people, even if you're having dinner with your iPad is better than spending faux time with the Kardashians.

Hemoglobin is my new best friend! Tomorrow, I think I might actually make it to the grocery store.

Transfused and Confused

I'm squeamish, that's a fact. Always have been, always will be. I'm used to getting blood drawn and being poked and pricked from every direction and I don't fuss or flinch and I definitely, don't look. Once I look I'm a goner, I can't so much as see a syringe go into an orange. So the idea of a blood transfusion had me worried, I thought as soon as I saw the bag of blood I'd be woozy. Turns out, it doesn't really look like blood, it's not that shiny red, it's a dark purple so no problem at all.

What made me queasy was signing the consent form which tells you all the things that might be in the blood and at what corresponding risk level. HIV 1:900,000, tick-borne parasite 1:3,000, I don't really like those odds, but what are you going to do?

Blood transfusion = almost 7 hours in the cancer chair and I didn't even get one of the ones that reclines all the way. I'm told within 48 hours I could be feeling a lot better, and I hope that's the case, I am really due for a little upswing. My blood pressure was 80/50 when I got there which I guess is pretty low, so I'm in need of a Transylvanian boost. I wonder who's blood I got, it's a strange feeling. A friend said she was sure it was a virginal, professional athlete and I'd feel great, so I'm going with that over homeless guy who needed the cash.

Too Far In

Yesterday started poorly and ended well. Young, who comes to my house every month to move the dirt and mess from one place to the other {see earlier post “Young”} came and as always asked “you better yet?” When I say “no” as always, she responds with shock, “whaaa? not better yet? what wrong with your doctor, that chemo no good, you should be better now”. She proceeded to tell me about her uncle {or someone} who had stomach cancer {or something} who went to a mountain to get better “you should do that.”

Usually Young makes me laugh and I converse with her in her parallel universe, seeing how deep I can get in before my brain gets wobbly, “which mountain should I go to?”, “what should I do once I get there?” But not yesterday. Yesterday I wanted to scream and cry “go to a fucking mountain, and do what? die slowly alone in the cold on a mountain and who’s gonna watch the kids?”

Instead I went to bed and pulled the covers over my head... until I heard a big crash and ran downstairs and there was my favorite tea mug, made by a friend who had just recently moved back to australia shattered on the ground. Normally I’d say “that’s o.k., it’s just a mug, just a thing, not your fault, just a dumb accident.” But I was furious and I didn’t want to yell at her, I wanted to scream “get out, just get out.” But again, I just went back to bed, and pulled the blankets over my head and cried.

Cause that’s what I seem to do these days, cry... and complain about being tired and winded and exhausted just climbing the stairs or walking to the car. I’ve been saying that I just don’t feel like I’m getting enough air, it’s been dramatic enough to talk about.

I had regularly scheduled blood work done today and they called afterwards, as always and told me I’m neutropenic -- very {very} low white blood cells, as always, and I expected this, but today they asked, are you having trouble catching your breath? getting winded? “YES!” Apparently, my hemoglobin which your bone marrow makes is on the down low now too. Hemoglobin carries oxygen throughout your body and is made by your bone marrow. Chemo whacks your bone marrow. I was so proud of my bone marrow up until now for how well it's rebounded, but it like the rest of me has been pushed just a little to far.

They’ve told me to come in tomorrow for a blood transfusion which I’ll do, but with hesitation. I can’t help but think of all the horrible blood borne diseases like HIV and Hepatitis that are in the blood supply still undiscovered... cause you know how my luck goes. And it takes five hours and I thought I was treatment free for a few weeks.

I believe in alternative medicine and I believe in eastern medicine, but not enough and nor am I nearly knowledgeable enough about either to reject western medicine in their favor. So if I’m going with western medicine, the best I can do is embrace it and when someone says I need a blood transfusion, I’m not going to tie myself up in knots, I’m just going to get it. I’m too far in to turn back now.