Fragments

In my bathroom is a small MC Escher calendar, a Christmas gift. It took me until the end of January to hang it, and even then, I did it ineffectively - just scotch taping the whole thing to the windowsill in an impulsive fit, probably just to stop carrying it from one surface to another. There it still hangs, taped open to January 2014, showing a few cute little demonic lizards trapped in a mathematical cage in trippy space. Day after day I see it and think "I've got to flip it to February" but I can't get up the gumption to A) Untape it; B) Flip to a new month; C) Find a nail or tack. I think about this off and on, various times daily. Now it's March.

Saw my surgeon today in her pretty office with Van Gogh prints. She was very surprised that the pathology report from last week's third surgery showed some cancer still remaining, despite her having removed another substantial piece of me.  3.2 cm long by 2.2 cm wide by .7 cm thick - whatever that is, I'm not feeling very metric right now. Not to mention symmetric. 

I'm running out of milk and raspberries. And I'm running out of plants that keep freezing in the winter. And we are running out of coats. And I keep getting more and more bookshelves but I can't find the books I want and I keep getting more and more books. I imagine the shelves filled neatly but I don't do anything about it. My garage has boxes of books that I imagine alphabetically and thematically and neatly organized on my white and wooden shelves. But they're not. I imagine making my blog into a book or part of it into an essay, but I'm running out of tape or something. Or imagination.

I had almost no pain after the surgery. It didn't hurt me much pysically. My surgeon says she is going to consult with the pathologist regarding the specificity of his report. She wonders exactly what was sliced through or sliced next to. She also wants to consult with the radiologist. Everyone needs to be consulted to figure out what to do with me as I am not a simple case. My oncologist assured me that the chemotherapy would take care of anything left in my body. My radiologist told me that anything left in my body would not have been taken care of by chemotherapy because surgery obscures circulation. My surgeon said sometimes this just happens. I don't know.

My sister got these brown square toed boots a long time ago. They are too big and they have a sharp wrinkle that hurts my foot and they drag when I walk like I'm a slug drunkard. I steal them and wear them and ask her to give them to me whenever I'm with her in her home in her little shrine closet. She always says no you can't have them stop it they're mine. She mailed them to me.

My surgeon is going on two-week vacation. She likes France, as do I. One of my favorite memories from my last trip to France was getting croissants and hot chocolate at some little tabac somewhere, nothing fancy, but they were delicious. I think you can literally get a better pastry at a gas station in Paris than you can at the best bakery in Austin. So I might have to have a fourth lumpectomy. Or not. I'm in another white space, where I have to wait, simply wait, wait, until other people have discussed what to do about me. I don't know what the future holds in the next few weeks or beyond. The plan was to start radiation in about three weeks, and following that to start taking the hormone pill that I dread. Right now all of that is on hold in case I need another surgery or two or 10 million. Nothing is planned right now for sure.

I am okay. I am calm. I'm going out to dinner with some friends. I'm about to Spring break with two creatures of my heart. Led Zeppelin is on. The floor has been vacuumed. The counter is clean. The backpacks are flung. 

10 surprisingly ok things about having breast cancer surgery for the third time

1. You recognize the nurses, medical tech, and anesthesiologists who come in to stick an IV in your really skinny and bony hand, ask you to pee in a cup, tell you to undress and put on a green backless gown and then ask if they can do anything for you, but really they don't mean it.

2. You don't go in with a migraine from the stress like you did the first time your left boob was to be sliced open to remove life-sucking cancer because now you're pretty used to the idea and pretty calm - although still inside your subconscious is cranky but you can tamp her down.

3. You go ahead and say "No I don't like Tramadol, please get her to write me a prescription for Vicodain," because you're kind of an expert on all this stuff now, like a boss.

4. You don't even read or notice the take home instructions. Or the pain med stuff. It doesn't even hurt after a day - why? Then why'd I ask for the good stuff? Why not.

5. You call your surgeon's nurse Nancy like when you call you say "May I speak to Nancy?" Which is nice cuz you've always liked people named Nancy.

6. No one really notices you've had surgery which is fine, cuz you're kind of tired of being the sickly sliced-upon one and wish to be more like a regular buffalo in the herd.

7. Your husband forgets to ask the doctor any details about the surgery and you're not that mad like you used to be because you figure what the hell - you'll hear about it soon or maybe what the hell does it matter anyway?

8. You now understand the difference between general anesthesia with gas versus IV anesthesia (which I got) and now understand what they meant last time when they said you "kept trying to wake up" and you're glad you don't remember that.

9. You're now very sure that having surgery - even having the inside of your breast scooped out for the third time through the same opening and having a nine inch tube and hotel that was sewn into your chest muscle unsewn and ripped out - is so far and away preferable to chemotherapy that you're genuinely not the slightest bit afraid of surgery and in fact find it rather relaxing an occupation (perhaps you're an idiot).

10. Bandages, blood, stitches, waterproof super sticky plastic stuff, steri-tabs, boob flattening ace bandages, and sleeping on your back only seem normal.

Absurd but ok

“At any street corner the feeling of absurdity can strike any man in the face.”

-- Albert Camus

Lots of things have happened since I blogged yesterday, which makes yesterday feel like two months ago. 

Right after I posted my blog I got a call saying that my entire plan was to be rearranged in a whole new way, with surgery not for weeks and weeks and, instead, hopscotching in front of surgery, I was to start taking Tamoxifen - an anti-hormone pill that I've been dreading. 

"Yikes!!!!!!" I said! 

Me scared of that pill.

I'd been hoping to put Tamoxifen off for months and months and months, and was secretly even hoping maybe that everyone would forget about it and it would fall off a cliff. But ok...

Then today I got two very interesting phone calls:

1. The surgeon's nurse called to say oh my! Guess what!? We had a cancellation! Can you be here at the hospital tomorrow at 5:30 AM for a 7:30 AM surgery? I said sure… So I'm having a re-excision surgery tomorrow morning. Isn't re-excision a cool word? 

Dr. Nelson gets to cut open the same scar for the third time. Re-incise the same incision. Perhaps I should have a zipper installed. She will be scraping out a very thin lemon peel slice of remaining invasive ductal carcinoma that's right up against my ribs in the very back of my chest area. I hope she doesn't go crazy or slip and accidentally scoop out a rib and then stab my heart and kill me. I don't think she will. I trust her.

2. HEB pharmacy called, leaving an automated voicemail that my prescription was ready to be picked up. My Tamoxifen. A drug that I have to take for 5 or 10 years and that has a huge long list of side effects, and has to be delicately balanced depending on where you are with hormones. 

Hey, okay, I get it… The long-term survival rates are much better with Tamoxifen. 

But still, I think I should be able to discuss this with somebody before I start popping this little pill of a pill. How personal and lovely and charming and warm this voice mail from my grocery store makes me feel. I think I still have free will. I am not taking one molecule of that drug until I have a face-to-face meeting with my oncologist to discuss the side effects, not to mention the fact that I'm taking another prescription that is supposedly very not ok to take at the same time that you take this. I'm not going to blithely drive over to HEB and pick up a prescription and start popping it with nary a word. Well, I might, if it were more of a fun drug...

That's my latest final plan. I think. It's dada. 

I'm ok with all this!

I'm this with all ok!

Ok this is with all me!

"If at first the idea is not absurd, then there is no hope for it."

--- Albert Einstein

Lull

I am in a lull. A ditch. At time of nothingness, a vacuum, a vortex. Nothing.

Ticking away the moments that make up a dull day

Fritter and waste the hours in an off-hand way

Kicking around on a piece of ground in your home town

Waiting for someone or something to show you the way

I'm in the in-between. The in-between time, between chemotherapy and radiation. I guess my doctors weren't talking to each other so one of them was ready to start me on radiation, while another of them in another room in another corner on another planet wanted me to have a third surgery, while the third of them, the oncologist, was merrily managing my dripping. The radiation expert did not know that I needed a third surgery so was planning to send me off to the microwave right away. She was shocked and surprised when I reminded her that I was supposed to have a third surgery. I had no idea that I was the one to bring this news to her, I thought they were talking to each other behind the magic curtain. 

Now the surgeon's schedule is too booked up and she cannot fit me in. So everything has come to a screeching halt. My radiologist called me at home the other night to say that she would set up a special meeting with her colleagues on Monday, which was yesterday, to discuss and re-present my case to them. I thought that was very nice, and it made me feel good for a few days.

Tired of lying in the sunshine staying home to watch the rain

You are young and life is long and there is time to kill today

And then one day you find ten years have got behind you

No one told you when to run, you missed the starting gun

She said that she would call me on Tuesday. So here I am. It's Tuesday and I'm like a bug stuck with a pin, stuck to Tuesday, stuck at home, like a 15-year-old girl in 1973 waiting for a boy to call her. The Austin Cancer Center (my place) likes to call my home phone, so I'm just sitting around waiting for my home phone to ring. I'm doing laundry and rearranging bookshelves and I just watched an interesting movie about a girl with autism called Fly Away. And I'm trying to eat healthy food and all that stuff but I've got to say this is damn boring as hell and very frustrating. I feel like a useless used sour cream container that's just sitting there at the bottom of the recycling bin, I'm not even being recycled, I'm just sitting there.

Waiting.

And you run and you run to catch up with the sun but it's sinking

Racing around to come up behind you again

The sun is the same in a relative way, but you're older

Shorter of breath and one day closer to death

I know, I know, I'm not useless and this will pass and this is just a temporary thing and everything is going to be okay and life is wonderful. I get it. But part of the problem with having breast cancer is that it sort of sucks your identity away a little bit, and although I think I've managed to hold onto my identity pretty sort of, this feeling of waiting around for other people to tell me what to do feels very gray and foggy and I feel myself getting gray and foggy and misty, I'm kind of evaporating and getting thinner in terms of taking up space in the world. This must be what it feels like to be older and to be in poor health and to be buffeted around in the pinball game of doctors where you ping from one doctor to another to a nurse to a phone call to an appointment and on and on. Ping! Ping! I don't like that. In fact it keeps me up at night so I can now add lack of sleep to my stupid list of stupid stuff that is stupid.

Every year is getting shorter, never seem to find the time

Plans that either come to naught or half a page of scribbled lines

Hanging on in quiet desperation is the English way

The time is gone, the song is over, thought I'd something more to say

I'm in my nice home, with my nice tuna salad, and my nice yellow squash with butter and salt and pepper, and my nice television, and my nice new bookshelves. And I'm nice. And my couch is nice. I've done all the weeding and now the yard looks nice. The laundry is coming along nicely. 

Home, home again

I like to be here when I can

When I come home cold and tired

It's good to warm my bones beside the fire

Far away, across the field

The tolling of the iron bell

Calls the faithful to their knees

To hear the softly spoken magic spell

After I had my second lumpectomy, my surgeon clearly said that I would need to have a third one between chemo and radiation. She said this to ME. Somehow, my oncologist didn't know this, and when I mentioned it to her she said the chemotherapy would probably take care of the remaining margin left in my body. But then my radiologist, who apparently never heard that I was supposed to have a third surgery from anyone, said that chemotherapy sometimes doesn't get at any remaining margin because of impeded blood flow to that area due to previous surgeries. Well, that got my attention! Now I'm all like, hurry up and get this remaining margin thing out of my body stat! Let's go to surgery right now! I don't want any cancer cells in my body at all! 

So I'm getting conflicting information. I can deal with this, I know I'm not the center of the universe for doctors, or breast cancer, or surgeons or anyone. I don't expect perfection, but I would like to move along to the next stage, because the stage is flattening me.

Here is my plan:

1. Get call from a doctor. This doctor could be a radiologist or a surgeon.

2. Rush off to have surgery at a moment's notice. Or, alternately, hear that I don't need to have surgery. (Which will result in a debate with me). Or, alternately, write down a date in my calendar to have surgery sometime in the next few weeks.

3. Start radiation.

Just waiting for item number one to commence.

Lyrics: Pink Floyd "Time" (of course - but you knew that)

10 things about my radiant journey, make that 11

Getting ready to start radiation therapy 

1. When you have surgery your body is sliced open with a really sharp knife. After the slicing and removing or twisting or sewing up or fixing up your secret innards section of surgery is over, you have to be put back together. From the inside. You are sewn, cauterized, melted, glued or magicked - all of your cuts and seams stuck back together neatly. Sometimes this glue or mouse-thread or magic sticky stuff makes teeny tiny blood vessels inside your insides get kind of stuck together and not work very well. Little capillaries or tiny little arteries might not be connected to the same rivers and streams they used to be connected to. 

This means that anywhere in your body where you had surgery you might have weird little patches of patchy little towns and villages that are no longer receiving the same nourishment, the same bloody nourishment, that they used to. They might be kind of cut off and isolated from the body's main circulatory system. Like a walled off little village that doesn't communicate effectively with the outer suburbs and counties and states and countries of your universe. 

What does this have to do with me? Do you remember me telling you that even after my second surgery, the doctor said that a tiny little margin of cancer cells had been left inside of me? A crescent moon? Well that slice might not have gotten effectively poisoned. It means that even though I've had chemotherapy, there may still be a little tiny bit of cancer inside my chest, inside my breast that's still there, unpoisoned, untouched, lying in evil wait. I think I have to go under the knife again: lumpectomy number three. 

2. You're supposed to start radiation four weeks after chemotherapy ends, six weeks at the outside. It's been two weeks so far.

3. When your breast is radiated you get tattoos, little dots that help them guide the beams in. Wonder if I can get some kind of a design, like little yin/yang signs or little teeny tiny peace signs? Or I get to pick the color of ink?

4. My doctor thinks that only my left breast will be radiated, but she wants to discuss my complex case with her Tumor Board before she makes the final decision about whether they also will be radiating my lymph nodes. That is a board that I never hope to be a member of. Or see in Chance when I play Monopoly. Meet away, leave me out.

5. The radiological side of the Austin Cancer Centers office north is on the right side of the hallway. I've never been over to the right side of the hallway and I found it much more comforting and delightful than the sickening and poisoning left side of the hall. I never want to go to the left side of the hallway again. Never thought I prefer the right over the left, but in this case I do.

6. They recommend California Baby calendula cream to help your skin with the burning. It supposedly works better than any prescription.

7. Tests show that high levels of antioxidants or vitamins A, D, E, or C render radiation therapy ineffective.

8. I will be receiving some kind of new accelerated radiation beam, I hope it's not a freaking microwave, that will make me only have to have 20 sessions instead of 30. This means I'll go every day Monday through Friday, at the same time of day each day, for four weeks straight. Each session will be only about 15 minutes. I will need to schedule it around my yoga practice, my personal trainer schedule, my tennis lessons, my pilates, and my membership and duties as a member of the board of the ballet, and the museum, and opera, and my duties as a guest lecturer at SXSW and a model for Fashion Week and running a local food bank. Actually I meant I'll try to schedule it around my viewing of the Today show, driving kids in a van, and occasionally going to Thundercloud Subs for a tuna sandwich.

9. My friend Rebecca used to try to steal bites of hamburgers from my radiologist's son and we discussed that today in my meeting.

10. The plan is still as clear as mud. I'm having a mammogram tomorrow, and then my surgeon and my radiologist and my oncologist and I and the scheduling department in the hospital and my cardiologist and perhaps the media and Pres. Barack Obama all need to consult and figure out what/who/where/why is happening first, tests, or CAT scan, or surgery blah blah. Everything depends. No one knows anything yet and everyone was confused by everyone else's requests and information. So it's a boiling pot of sticky jam but soon will cool to a sensible plan. 

11. None of this bothers me. NOTHING AFTER CHEMO SEEMS LIKE A BIG DEAL. As long as I'm not being injected with rat poison I'm delighted. Bring it on.

I'm baaaaack......I thiiiink

I'm conscious. 

I saw my doctor today at her Lakeway office because that's where she works on Mondays. I guess people who live in Lakeway get much more beautiful views and gorgeous offices that look like something out of MOMA. It was swank. If I ever do chemo again I'll be sure to move to Lakeway and use this location. Or just probably jump off a cliff. 

Dr. Gorrebeeck, my mass-ologist, says I look great (which I'm sure is on a sliding scale of the word "great," sliding all away down to maybe about a 3.4 if you're thinking about like a balance beam routine at the Olympics or something.) But I'll take it, I'd rather look "great" to her then look like I'm on my way to the ER again and my blood numbers look crappy but in a way that's normal for someone 11 days out from a 6th hit of poison so she felt tepidly delighted about it/me. 

Side note - when I was lying on my floor at home in front of the refrigerator, on the non-pacific ocean of my floor, apparently my blood pressure had gotten so low that it was kind of cool and sexy in an ER textbooky way, so that the seven (!) paramedics hunkishly occupying our house got all excited. One kept pulling my eyelid to see how white it was inside because it was so spectacular. This one large dark handsome guy (let's call him Kent) kept saying "Hey!!! Guys, come over here - check this out it's totally white! Oh wow, look at this, it's a perfect example of (something medical something something)."  I missed the term as I was blacking in and out. Then another guy or two (let's call them (Dorf and Ian) would rush over, yank down my eyelid like a roller shade and say "Oh man that's really cool!" I was thinking to myself: "Oh goody I've always wanted to donate my body to science and now at least my lower eyelid can assist these delightful young men in their learning about loss of blood to the head!" Also: I can hear you and I can feel that. It was very dreamy as in like a dream, not as in awesome.

Doctoro also said I've got a large splash of anemia and some sky-high white blood cells, all of which she feels are rather normal for a blob of my type right now. 

Luckily she also said I could go back to driving, which is a good thing since I got to drive all over Austin going to three hardware stores looking for flexible surgical latex rubber tubing and funnels to help three 8th grade girls build a water balloon launching creation from hell for their algebra class. Two out of three stores were out....must be a popular item. Looks like giant spaghetti. 

I am fairly pleased with the end result of the water balloon hell thing that yes could indeed launch a water balloon over 100 meters. I remain unamused with the time management skills of teenagers and yes mine leads that parade of 11:59-ishness so I cast so aspersions especially. I just feel that redoing eighth-grade right now does not fit with either my personal aesthetic or mood.

And, as we were getting THAT particular little projet put to bed, I thought I heard a voice alarmingly like Violet's piping up from the backseat at about mile 50 of tube-searching, saying something like "Oh yeah I also have to bake film video do make create a fancy iced cake tonight for speech class tomorrow" and my mom translator translated this into "Yes darling that's nice whatever you say," which also means "I'm going to pretend I didn't hear that." Sorry can't take it all on. I am currently upstairs in my bed with the covers pulled up to my chin drinking a gin and tonic and speaking this blog into my phone. I know no cake. I bake no cake. I speak no cake. I cake no care.

Which reminds me, why did I going to the hospital last week after all? Since no doctor seems to really know what the cause of my fainting was, my intuition has secretly whispered it to my subconscious. 

I know. 

My body wanted a break from chaos so it shut me down. It turned on my off switch and caused me to discontinue cease and desist all operations and fall to the ground quickly and efficiently and CLEARLY so that I could be carried away to a cave to lay still for 48 hours. The body knows.

For the first time in six months, while I was in the hospital, I lay still. For a LONG TIME. I stopped. I did not move except to the bathroom. For 48 hours. I did not turn on the lights. I did not talk on the phone. I did not watch television. I did not read magazine or a book (alarming for me). I did not have visitors except for a few family members and even then only for a few minutes. Did not want any. I wanted no input. I did not wash my face or take a shower or change out of my backless pantsless gown. It was blessedly quiet and I rested and slept. I confess, this may sound very strange, but I liked it. I needed a break and I got it. I think my brain knew this and forced it to happen even against my own will. 

Now I'm back.

People keep asking me about the tests that are going to show if the chemotherapy was effective. One of the reasons I started writing this very blog was because of the mind fuck that it is to have cancer and have the scenario that I have which means that there is no way to tell if chemotherapy was is or ever could be effective. This is what I wrote about my first few blogs because it was SO FREAKING STRESSFUL to accept. Yes cancer cells went to my lymph nodes but only a teeny tiny amount smaller than a part of a grain of rice. From there, it didn't seem to have spread to my bones or my lungs or my brain, at least not in any way that showed up on any scans. So therefore there was no tumor in my body to watch shrink under the course of chemotherapy. So therefore there is no way to rescan my body and see anything that shows the effectiveness of chemotherapy. Nothing to measure. The whole goal of chemo was preventative, just in case one cell of cancer had been circulating around in my body. I don't know if chemotherapy was effective. My oncologist doesn't know if chemotherapy was effective. My radiologist doesn't know if chemotherapy was effective. My surgeon doesn't know if chemotherapy was effective. Not one of us will ever know if all of that poison that I just took into my body did anything at all or was effective or was even needed.  That made it hard for me to take because I know I was taking something that was making me very sick, possibly for no reason. But the fear of cancer was greater than the discomfort of a no-measure leap of faith, so I took the chemotherapy. And now I'm facing another surgery and radiation, with the exact same scenario: I have no idea if either of these or ANYTHING I'm doing is even necessary. Yet here I go. It's kind of a metaphor for life: WHY???????? What does it mean? Maybe nothing. 

I'm good with that. 

I don't know. 

So I've got my little appointment book and I've been busily making appointments with cardiologists, mammogrammers, my surgeon, my new radiologist, and stuff like that. I'm setting up the next section of this little journey. I'm busy for a second and for a second this distracts me from what we all know deep down: maybe it all does mean nothing. 

I'm heading out. To the next part of my Appalachian Trail, which blessedly will not include poison darts through my chest. Radiation lies ahead. 

I'm conscious.

That's all I know for now.

A premonition

I think my last blog post was a premonition, a message from the future, because oh my friends and bunny rabbits and pages and sages and wise pebbles and my friends, I had a fall. A smear to the ground. A syncope. 

Sunday night I reposed upon the couch as per usual in my post chemo blur, waiting for the clouds to clear. But I was more flat, more like a cooling bowl of soup no one had blown on for a long time, more like an old congealing yogurt than usual. As I had said only a little while earlier on my blog, I felt much more flat and depleted that I thought I should have felt that day. I wanted to be planning my post chemo party and getting ready for a brighter future. But I didn't feel like it.

I glared upon the Olympics. I drank tea. I ate my traditional burnt toast. In a moment of forced cheer I decided to sip a Negra Modelo beer, hoping that it would make me feel more Olympian, avian, human. I took a sip, then another. It was cold and good.

Then.

A poison dart from across the veil of life pierced me and I was instantly plunged into cold boiling hot galloping ski jumping heart beats and I gasped - could not breathe or think. My heart was rocketing up up up faster and faster and I felt out of my body - in an instant. I tried to feel my pulse - I could not know how. I tried to talk to alert Mike that I needed help. Everything got black and webby with huge gaping Swiss cheese grey holes of smoke. I tried to get up and fell, laying my face on the cold floor. I was overwhelmed with sickness and doom and fear. I tried to get up again. 

I woke to my children crying and Mike over me. My head was on the wood floor, it was blessedly cold. The webs descended. Sirens were coming, my baby was crying and my only thought, even more than survival, was - do not let my children fear. My eyes closed. Men surrounded me and lifted me, pricked me and bled me, carried me and took me. 

"Often she dreamt she had two wings, and one was frightened, and one was happy."

Erin Bow

What did I know? No thing. 

Where did I go? To a dream.

Where am I? In a room under watch.

What did I know? I was falling.

What was I? A blue bird, a paper doll.

I was lifted and carried and strapped and pierced and bled and driven and bundled and touched and oxygenated. I submitted. I arrived at an ER Sunday evening dark. I was admitted (to Harvard!? No. To the world of real writers? No. Somewhere? Yes.) I am still here. I had what's called syncope - passing out, but they don't know why for certain, so want to be careful. Want to make sure my heart is ok. Chemo drugs can be bitchy to the heart in all ways - romantically, physically, emotionally, hilariously, absurdly. A wise kind doctorman from a wise kind continent said "sudden onset syncope can be notorious" so he wants to watch me. My new heavy metal band: Notorious Syncope.

I don't need anything.

I'm waiting.

I'm patient.

Literally.

My family is ok. We are all ok. My friends and family thank you again for your love. I hope to move past all this soon. I'll go slowly don't worry.

But I wonder what I knew.

MARGARET ATWOOD

Foretelling the Future

It doesn't matter how it's done,

these hints, these whispers:

 

whether it is some god

blowing through your head

as through a round bone

flute, or bright

stones fallen on the sand

 

or a charlatan, stringing you

a line with bird gut,

 

or smoke, or the taut hair

of a dead girl singing.

 

It doesn’t matter what is said

 

but you can feel

those crystal hands, stroking

the air around your body

till the air glows white

 

and you are like the moon

seen from the earth, oval and gentle

and filled with light.

 

The moon seen from the moon

is a different thing.

"Yesterday the bird of night did sit,
Even at noon-day, upon the market-place,
Hooting and shrieking."
(Julius Caesar, 1.3) 

Shakespeare