Friday, December 26, 2008

New chemo, and happy solstice!

My darling cuz writes me an email every night, and i save it in case I have insomnia, which is one of the more beastly side effect of cancer and chemo. This started out as a reply to her.

Just in case you wonder, I love love LOVE your emails. They are my saving grace sometimes.

Chemo this morning, and after a TON of dithering, Our dear Dr. L changed the main chemo drug from taxol to paclitaxel NAD. Three cheers for Dr. D in SF who put us on to this. In a nutshell, Taxol and that family of drugs - all from Taxis brevifolia, the pacific yew - are delivered by a toxin. Usually a solvent, doesn't that sound yummy? This is what allows it to penetrate the cell wall. The NAD in the new drug is attached to albumin - it's bound to a lipid, instead of a solvent, and THAT is what allows it to penetrate the cell wall. It's the solvent that usually causes the nerve damage, NOT the the chemo drug itself - so with this drug, I should have much less neuropathy. This is reallio trulio cause for celebration. The last three days I was back to doing the Institutional Shuffle- you know how little old ladies walk in nursling homes? That's because either they can't feel their toes, or that their feet hurt so much that they are trying to put as little pressure on them as possible. Mine is a combo - imagine the worst pins and needles you've ever had from your foot falling asleep - only it's all the time - and worse at night, when you are falling asleep.

Needless to say, having my toes and soles of me feet (and me hands) go numb is NOT conducive to a lot of stuff I like to do - knit. Play guitar, walk run jump in and out of boats...and DANCE. I really, really need the tips of my fingers and toes. So the phrase insurance companies pay attention to is QUALITY OF LIFE. I've dropped this one several times, and it seems to be working.

Another benny is that it only takes half an hour, instead of 2-1/2. I got out of chemo after only three hours! Felt like a kid who'd gotten to go home early after a terrible test!

We spent Xmas eve out at Sam and carolines, after hearing Sam sing in the UU choir. It was wonderful - Kevin seems to be joining the local Episcopalian chorus, and I may do the UU choir, so we can take our pick every Sunday. Sam's singing is pretty wonderful, and he's worked really hard at it. Also saw Cliff and Marion, and David, Jane and Lisa, which was jolly. Marion is mostly not there, with her dementia, and it's heartbreaking. She still sings Christmas carols, though.

We of course ate and drank endlessly, and being two weeks out from chemo I ate EVERYTHING. It was heaven. Cornish game hens for dinner, eggs benedict for breakfast, I cooked lots of veggies, Kevin and Tess cooked desserts. What do you suppose this says about our characters? Still mostly can't eat sugar or acid, altho I admit I did indulge in a few stocking chocolates.

Ms. Santa decided that everyone needed cashmere, so she went around buying cheap sweaters and pashminas. Kevin now claims that I really only love him because he is a giant stuffy that I can wrap in cashmere and snuggle up to. He may not be entirely far wrong.

Tess got knocked off every flight between Sunday and Wednesday - No unaccompanied minors into Seattle, over and over and over. I don't think I've ever changed a plane ticket that many times. In addition, her luggage managed to go to Seattle without her. Bob thankfully went and rescued it, since it had ALL her warm winter clothes and all her favorite clothes. Seattle Airport probably still doesn't know where it is....

So we had her here, which was jolly, and Bob flew in late Xmas night. We all sat around by the fire, and of course I went to sleep on the couch at 8 pm, as usual. I should just plan to sleep from 8 pm to 3 am, that seven hours, right?

All my love! Thank you for the best gift of all, nono - your time.

Wednesday, December 17, 2008

This is an interview about chemo and food with me and my darling Tracy, of TracyFood.

While I don’t know a lot about nutrition, I probably know even less about cancer and chemotherapy. However, one of the greatest things I keep learning as I get older is that I don’t need to know everything — I just need to know how to ask people who know stuff I don’t. So, enter the guest post!

My friend Christine does know a thing or two about cancer and chemo both, so after reading Eddie’s message, I wrote some email, asked a bunch of questions, and got more answer than I can fit in one TracyFood entry. Over the next few weeks, I’ll be posting her wisdom in a few installments, and thinking of more questions to ask, in case it turns out we’re serious about writing a book like we keep talking about over instant messages. Here we go…

The rest is at -

Friday, December 12, 2008

Short post for Koren

Dear cuz,

We've received the amazing quilts, and both Tess and Kevin immediately wrapped them around their shoulders - how's that for a virtual hug? Thank you, thank you, thank you! I will try to post piccies sometime soon. Need to figure out how to integrate images and art into this blogthing, anyhow.

I'm actually doing really well. Other than chemo, I'm fine. This time so far has been much easier - we have a lot fewer OTHER stressors on our plates, for one thing. The biggest complication is that Tess is now an early adolescent, so we have the sulks and pouty faces thrown in with the emotional reaction to the cancer. I know she needs to get her feelings out, but does it have to be SULK?

The chemo is so far hitting me much less - i have more brains, and more appetite. I've lost a little bit of weight, but most of the week seem to be functioning normally. My continuity is sometimes a bit lacking - i get to work, and go, now what in HELL was I working on yesterday? But perhaps that's just middle age...

Our visit to UCSF for a second opinion was encouraging, and he talked with a fairly long term view. If taxol works, I can continue to use it for a long time, perhaps years. With all the treatments now, a cancer like mine is really looked at as a chronic disease, like diabetes, rather than a death sentence. We talked about a number of other chemo drugs, and stuff is being developed so fast now that there will be new treatments all the time. So try not to worry too much.

In other news, I've been doing this extremely foofoo touchy feely art thing with a group of women called Soul Collage (I kid you not) but having a blast doing it. It's pretty structured - the board are a certain size, and they have this elaborate structure around what the different cards are supposed to symbolize. I don't seem to use them that way at all, I just love MAKING them. And it's straight out of kindergarten - cut pictures you like out of magazines or old calendars, and stick 'em down with rubber cement. The structure eliminates a lot of decisions, so for me it's just pure PLAY - like cutting out paper dolls. I'll try to send you images of a few of mine, and there are quite a lot by others out on the internet if you are interested. Just don't ask me what archetype my card is supposed to symbolize.

I've picked up a couple of weird books about artists and creative process, and I'm itching to mess with collage on a larger scale - it's taken me for damned ever to realize how many unspoken rules I learned about making art, and that I'm allowed to break them. i.e. - collage isn't "serious" art, nor is mixed media. (Can you hear my mother's voice? As you know, lover her to bits, but she did have strong opinions about things...) But I love messing around and mixing things together - text and computer stuff and photographs and paper and everything. I recently saw a show of someone I know peripherally (the husband of the woman who teaches the Soul Collage class), and it was all computer printed photos that he then manipulated, like folding or cutting them and weaving the torn pieces together. and I LOVED it. She is doing a class this spring, and I'm going...just to have a couple of hours set aside for art making.

I'm also in the process of turning our living room into an art studio. A whole table and shelves just for projects, and I don't have to clean it off the dining room table in time for dinner. It frees me up to work at a bigger scale, and be much messier.

Love to all of you!

Saturday, December 06, 2008

Five down, seven to go

Chemo went pretty easily yesterday. I think we've finally found the right cocktail of drugs for most of the symptoms. It's so weird - I have a BOWL full of prescriptions in the bathroom, this for the girl who usually is reluctant to take ibuprofen.

I get tagamet (reduce stomach acid), kytril (antinausea), benadryl (prevent allergic reactions), dexamethazone (a steriod to help reduce inflammation from the taxol) ativan (to make me all happy/stupid - also antinausea, also helps reduce the jitters from the aformentioned steroid), tylenol, and then finally taxol - dripped in over 2 1/2 hours. The whole schmear takes 5 to 6 hours, depending on how easy it is to access the port, and other stuff. I usually sleep after the first hour or so, since the ativan makes it so I can barely walk, I'm so spacey. Just as well.

Then I have oral versions of must of these at home, also psyllium husks and lovely things like that, since it messes with my digestive system at the other end, as well. Kevin is making me fresh juice three times a day, which really helps - gets a little fiber into me, and because it's juice the nutrients are much easier to digest. I've lost somewhere around 6-7 pounds so far just from the chemo - there's days where I eat normally, and days where I want to eat nothing whatsoever. This is usually caused by reflux, where even drinking water give me painful heartburn. I don't remember this side effect from the last time around, but I wonder if it's also contributed to by the tumors along my trachea. Extra bumps right at the lower end of the esophogus.

This quite possibly is TMI.

So last night Tess was off with friends, and Kevin and I get into the hot tub - what bliss! - and then he went off for a beer with our friend Tom. I was sorry to see him go, and yet glad. Last time around I think he didn't take good enough care of himself through the whole treatment, and by the end was horribly run down and exhausted, and suffering from compassion burnout. I think he forgets that if he doesn't take care of himself, ultimately he won't be able to take care of me.

I puttered around the house, not accomplishing anything much, but I've got an art project in my head, and I can't work on it until I clear the decks a little bit. I even (bravely) drank a small glass of champagne. That's the trade off for acid reflux, if I eat other stuff that's really soothing, I can enjoy a glass of wine every once in a while. Probably on top of all the other junk, I had quite a buzz on, but it felt like a HUGE treat.

But back to the puttering. We have a formal living room that we hardly use (so it turns into a big ugly storage space for junk) but I'm slowly trying to turn it into an art studio. Next thing is a big ikea table, right in the middle of the room. yay! I've been doing small collages, and I want to experiment with bigger ones, and more mixed media - both collage and painting. I'm sure the first few will be hideous, but I sort of don't care. If anything is even interesting, I'll post a copy.

I have this fantasy of doing enough work to have a group show at our local art center, all on the subject of cancer and body image. I've got at least three things in mind, but they all would have to work to be the basis of a show. Both wall art and sculpture. Have you seen any of my tit bits? (Knitted...)

A thousand thank yous for all of you who pitched in for the hot tub - I'm sometimes in it three or four times a day, and off and on in the middle of the night, when the insomnia gets really bad. Lately it's been foggy here, and we have these great mysterious nights - very Jane Eyre.

Love to all,

Saturday, November 15, 2008


So what's chemo really like, you ask? Well, dearly beloved, let me tell you at least of my own experience.

Kevin and I usually arrive around 9:30 am, although this is going to change. What I'm describing is a fairly typical regimen for breast cancer, although there are LOTS of different protocols, and other types of cancer have their own.

The first bit, which yesterday didn't go as smoothly as I'd hoped, is to access a vein. I had a port-a-cath installed a week ago, which is a little subdermal gizmo with a rubber top, that's attached to a tube running into my vena cava. That means generally they can get a blood sample for labs, and give me chemo and the associated drugs, through the port, rather than using a needle in my arm. I dislike getting poked with needles in the arm every single week, and I generally find an IV uncomfortable even though they are supposed to be painless, so I like having a port.

Alas, this week it was not to be. They tried to access the port, but since the surgery is only a week old, there's still some swelling, so they couldn't hit it. Three tries, and the nurses gave up. They don't like poking around any more than necessary. So the old IV it was. Always in my left arm, and I tell you, I'm running out of veins.

Then they give a passle of pre-meds, which decrease the risk and the discomfort of chemo. Notice I said decrease, not eliminiate.

Mine looks like this - tagamet, to decrease stomach acid. I sometimes ask for that first, since it's common to arrive with an upset stomach. Benadryl, to prevent a major allergic reaction - anaphalaxia - to the chemo drug or drugs. Dexamethazone, a steroid, also to prevent an allergic reaction, and to make the chemo more effective. Ativan, an anti-anxiety drug, both to offset a manic reaction to the dexametnazone, and also anti-nausera - most tranquilizers are also secondarily anto-nausea drugs.

These take about two hours - I try to eat lunch before the atavan and benadryl hit - in other words, when the room starts spinning. Yesterday it was a shrimp burrito, and it was heaven.

Then they start the taxol. First off, many chemo drugs are caustic, so the nurses don extra-heavy duty protective clothing. Imagine a hazmat outfit, but printed in happy happy pinks and blues, face mask with an eye shield, and heavy duty, elbow length rubber gloves. I want to steal one of these for next years' halloween costume.

The taxol takes 90 minutes, and generally I sleep through most of it. One of the nastier side effects of taxol is that it seems to have weird emotional side effects - I almost always cry about 30 minutes into it, and I'm typically weepy for about two to three days after, until it's back out of my bloodstream. Hard on my soul, and hard on the people taking care of me.

On this regimen, the next thing is Avastin. This is not a traditional chemo drug (poison - kills all fast dividing cells), but an antiangiogenic. Cancer cells, in order to become tumors, have to fool your body into believing that they are normal cells, and to grow a new blood supply. Avastin prevents new capillaries from forming, so new tumors get starved. Very nifty trick, that.

First time I had it, it took 90 minutes. This time they went to 60 minutes, next time I can go to 30, if i don't have a bad reaction. Again, generally sleep through it, but I have movies and books on CD just in case.

All told, takes around six hours. Then they unplug me, and I stagger home in a fog of drugs. One of these tends to wire me up, so I don't always sleep well the night after the chemo. Also makes me feel really hot and flushed - I look very pink and healthy, ironically.

It seems to take about three days to wash back out of my system. The second day after is usually the worst - energy level is lowest, nausea is highest. I've never ACTUALLY hurled from chemo, I take a VERY expensive anti-nausea drug called Zofran, but in some ways feeling like you are going to hul but never actually doing it is almost worse. At least when you have flu, and you DO hurl, you feel better for a little while after. This just goes on continuously. Bleagh.

Day four, Tuesday, so far I have felt miraculously better. Not 100%, but far better than the day before. I get two more good days, then back to the grind.

Thursday, November 13, 2008


Okay, no energy to write much tonight, but after juicing and talking about chemotherapy and nutrition and organic fud and health and my overpublicized digestive system and cancer and blahblahblah until the cows come home, I have to say that
Weight Watchers Recipe Cards, is my single most favorite web site EVAR.

I laugh SO hard every time I come back and read them. I try not to do it to often, so the text is fresh.

The soup is love, and we have an electrified fence.
grun o'doon

Monday, November 10, 2008

What does coping with grace look like?

My dear,

OK, this is really hard. I'm already tired and sick of this treatment, and it's barely begun. Yesterday one of the imps's friends had a gymnastics meet here in Davis, and I really, really wanted to go - and I didn't get out of bed. She qualified for state competition, and I MISSED it. Waves of nausea keeping me home. I don't really mind when something hurts, unless it hurts a LOT, but I fricking HATE being nauseous - and chemo is really all about nausea. Already have mouth sores. Nothing tastes good. Nasty metallic taste in my mouth. Feel like hurling all the time. It SUCKS, SUCKS, SUCKS.

I'm going to say this once, and then hopefully not say it again I'm really, really scared and angry. I'm told that the average survival for someone with this beastly disease at this stage is 2 to 3 years - 50 percent die within that time. Fuck average. Average sucks too, at this point.

I can't believe how unfair it feels. I know that I'm otherwise in good health, and will probably beat those statistics, and blah blah blah, but it creeps up on me in the middle of the night. My daughter is TEN for goodness' sake. I want to see her graduate from high school! From college! Thirteen! How can I croak on her when she's THIRTEEN? And it could be chemo or other treatment ALL the rest of the time. No break for me, no break for her, no break for wertperch. Just chronic disease, horrible, debilitating treatments, and misery.

I can retire at 55. 10 years, 11 years - how has it come to me praying that I get 10 more years? Do you have any idea how many things there are that I still want to DO? I'm already dragging myself around like an old rag bag - my body hurts from having the port-a-cath put in last week, and still bloody sick from the chemo. I have two new scars on my left breast, and that's the only tit I have left. I burst into tears on Kevin yesterday, because I feel so ugly and sliced up, and how could he possibly feel any attraction to me? I feel like a car that's ready for the junkyard. Yup, right bumper's gone, upholstery is worn out, sound like she's blown a head gasket - you should probably consider her totalled - it'd cost too much to fix her up, at this point.

I still have hope, but it's feeling like a long, hard road, with no guarantees that I ever get to feel good again. Cancer as a chronic disease is still an ugly proposition. Oral chemo - for the duration. Clinical trials. Monoclonal antibodies. Bone marrow transplants. It's not like diabetes, where if I manage it properly I can live my normal life span. I can go ahead and do every single thing RIGHT, and it's still all a gamble. It may make exactly NO difference, chemo may just make me miserable all the time I have left.

I apologize for this, people. There's really no reply, I just needed to get it out of my system. I'm trying to put on a fairly brave face for the imp, and even for wertperch, who is taking all of this pretty hard. I needed to have a place where some of the more painful stuff can leak out of the cracks. You don't have to do anything about it, just listen. (Read?)

In a way, I feel like I'm the Queen of Lies with the "brave face" I'm putting on. I want to cope with some sort of grace, and I feel like I'm missing the mark somehow.

What does coping with grace look like?

Thursday, November 06, 2008

The five stages of grief - sort of.

Dear cuzzes and others,

THRILLED beyond speech that Obama was elected. History in the making. I cannot tell you how joyous I am that a non-white person is in the white house. For the first time ever I can tell Tess that she could grow up to be president - and not actually lying.

Love his wife (altho WHAT was it with that red thing? Oy!), and that she doesn't pretend that everything, or her marriage, is perfect - Cindy McCain gave me the allovers - Stepford Wife from hell. Is she really an android?

TESSIE DANCED HER NUTCRACKER PART ON POINTE TODAY. First time EVAR. She's only been on pointe shoes for about 6 months. The kid is amazing, everyone - she is SO beautiful and expressive on stage, and she says "Mama! I love dancing on stage, and having people watching me dance!" (Ulterior motive - those of you here for thanksgiving, you can see her dance in it. hint, hint, hint, entice, entice, entice. And maybe even see ME dance in it! I'm practicing the part of a Party Parent in the first act - depends on chemo, though.)

I had a port-a-cath put in today, and it was a beeeyitch. Took FIVE doses of painkiller to get it down enough for me to go home. two pentathol, three vicodin. It goes like this - pain - narcotic - nausea, narcotic wears off, pain, narcotic, nausea from the narcotic, pain. Would someone PLEASE invent a painkiller that doesn't make me want to HURL?!?!? So I'm trying to find the exotic midpoint between pain low enough to handle, but without the hurling part. Tell me some good fifth grade barf jokes, I might need 'em.

OK, enough of that.

Chemo tomorrow, and they are going to give me the Steroid From Hell to me intravenously, instead of orally. Apparently this is far less likely to cause the manic jitters I had last week. So glad they THOUGHT OF IT. Wish they'd thought of it LAST week. I fricking hate hate HATE our medical system.

My cuz told me about a friend of hers they sent home the SAME DAY as her mastectomy. They tried to send me home the day AFTER the mastectomy, and I threw a fit. I was still not really handling the pain, and I was damned if I was going home, where I couldn't tell the nurse to crank up the fricking morphine. I had the surgery on a wednesday morning, and I went home on saturday. The treatment of your friend is totally, unutterably fucked. It enrages me. It boggles me. If Obama fixes exactly ONE thing, let it be our medical system. No, the war. No, energy and global warming. Fart. Ok, three?

Guess who we had a visit from last night. Wait for it.... Helen Anne! I had not seen her in something like 14 years - I think I last saw her when Nigel was FOUR. It was amazing, wonderful, fantastic - she looks exactly the same, and the two of us talked a double wide blue streak for three hours. It was SO much fun. She sends her love, and we traded much skuttlebutt about both extended families - were all of your ears burning?

I'm the walking personification of the five stages of grief right now, can you tell? Only she got it wrong. I can experience them all - denialgriefangerbargainingacceptance - in the length of one e-mail. Super Speedy Grief Queen!

However, Therese and I decided the process was missing two, especially in the grief after the loss of a boyfriend -
Denial, Grief, Anger, Bargaining, BITTERNESS, REVENGE.....and acceptance.

Remind me to post piccies of my fabulous new haircut!

Love you all tons, gobs, buckets!

Friday, October 31, 2008

And then I dropped the ipod in the loo.

So I started the chemo Thursday, and I was fine (tho jittery as all get out) until the last 10 minutes of treatment - then the big wave of nausea crashed. It's the first time that I couldn't sleep during the treatment, but I was wired to the gills, so I listened to music and wiggled the whole six hours. It was pretty awful, actually. Kevin went off to work, and next time I'm going to have friends tag team, so at least I have someone to talk to. Some of the time I was so wiggley I could only listen to half a song. The play list ended up pretty weird - something with a strong beat helped, and I think that banjos and drums affect a different part of the brain than other instruments - so lots of bang-jos and drums. If you want to make me a mix cd, I would be grateful.

I confess I wasn't expecting the chemo to hit me quite this hard, this early. Didn't sleep much on Thursday night, and still jumping out of my skin. I talked to the on-call doc on Friday, and he said it could be a reaction to the steroid (good!) rather than the chemo drugs themselves. This is hopeful, because I can probably cut out the steroid - can't very well cut out the chemo drugs themselves.

I did muster up the energy to take Tess out halloween shopping on Friday. They had a teacher service day (PT conferences next week) so they got Halloween off. How cool is that? So we went to Ross Dress for Less, which I've decided is my new favorite Halloween store. Tess went as an evil rock star - with this fabulous glitzy tango dress - and her first real pair of high heels. She's right on that magic edge between kid and teenager, and has wonderful qualities of both - not to mention that when she and Georgia and all the rest are sixteen they are going to stop traffic. Are these kids unusually beautiful, or am I biased?

I didn't actually really drop the ipod in the loo, I just came close. I was listening to music on the ipod; IV in my arm. Sometimes switching to the laptop for a different music mix - Kevin uses the ipod more, so it's mostly his music; and a BP cuff on the OTHER arm because they were monitoring a problem with one of the drugs. So in order to go the restroom, it was a fairly big ordeal. Remove the BP cuff, unwrap the blankets, get my shoes back on, disconnect from the computer, unplug the chemo pump, and then wheel it across the room. I just put the ipod on top of the pump, rather than spending more time untangling yet another wire. And sure enough, when I got into the restroom, the little bugger tried HARD to leap into the toilet. I caught it, thank goodness.

Thursday, October 30, 2008

Tuesday, October 28, 2008

Gastlycrumb tinies

So it's about what we feared - a recurrence in seven lymph nodes.
From the look of it, it's the same cancer as before, creeping back.

At this point, there are not good odds for a cure, so we are starting
to think of it as a chronic disease instead of a cureable one.
There's always a small chance of a cure - the "long tail" in the
statistics, but it's unlikely. (For those of you that like numbers,
let me know, and I'll tell you what I know, and point you to the
studies I've already read.)

I start chemo again soon, possibly this week, certainly next. I'm
having a new port put in a week from today, so I don't have to be
stuck with their little needles every week. This regimen will be
Taxol and Avastin. Taxol has all the usual caveats, hair loss,
nausea, blah de blah. Avastin is a monoclonal antibody (aren't I
fauncy) that targets the blood vessels to starve tumors. It's the hot
and fancy new treatment, and increases the response rate considerably.

As for how you all can help - I'm doing okay, other than the waking upat 3 am bidness, which is a pain. The support people are currently more in need of support than I am - send Tess your love, and give Kevin the opportunity to vent, or preferably go out and kick things and strangle small animals.

Lots of love,

Saturday, October 25, 2008

[Insert ugly emoticon here]

The preliminary biopsy results are "consistent with a metastatic
recurrence of breast cancer". As of the moment, that's pretty much all we know - I got this from an on-call doc whom I don't know, not from any of the regular doctors. I go in to talk with my oncologist on Monday, and then will have a much better idea of what the next line of treatment is, and whether it's possible to cure it, or only to
control it.

I'm doing OK, the wert and the imp are having a harder time. I haven't used the word "metastatic" with the imp yet, but she does know that the breast cancer has come back.

I'm glad I nagged my doctor to take a second look at the lymph nodes....

Friday, October 10, 2008

PET scan

"PET scan? What, are they looking for,
little cats and dogs inside you?
What fresh hell is this?

- wertperch

I had a PET scan on Wednesday morning, Oct. 8. The technical explanation, above, covers the imaging process - this is the more personal version.

The PET scan started out about 24 hours before the scan itself - I was not supposed to exercise. That meant I missed my Tuesday morning dance class - major bummer. But even 24 hours after exercising hard, muscles are still uptaking glucose, so it can obscure the scan.

It also requires fasting for 6 hours beforehand, which I don't really mind, since I often skip breakfast. What it did mean, though, is that I couldn't have my usual Yorkshire tea, and arrived at the doctor's offices with a raging caffeine headache. I seriously considered cheating, and told the nurse with all the pokey pokey. She laughed, and said that actually, they've tested it, and that caffeine increases the glucose uptake, and it can, indeed, obscure the test. Glad I didn't cheat.

Injection of the radioactive glucose, and a command that I was not even allowed to READ for the next hour - so the muscles holding up the book wouldn't steal the glucose. Who knew? But along with a fairly hefty dose of Valium, I did what any stressed-out, worried, former cancer patient would do - I fell asleep in the chair for an hour.

Then they helped me stagger in to the PET machine, where I lay for 45 minutes while the machine buzzed and whirred. The only uncomfortable part is that I had to hold my arms up over my head the whole time - I didn't know it was possible to get muscle cramps in your shoulders.

Then, thank the [Powers That Be], they let me go, and wertperch walked me down the street to the local coffee and tea shop. Food! Strong. Black. Assam. It had to be one of the top three cups of tea I've had in my entire life.


My doctor called me in the early afternoon.

Although I don't know a lot of the details, apparently there are seven locations that showed up as "hot spots" on the scan - two behind my right collarbone (the ones I was nagging the docs about in the first place), two in my right chest wall, and three along my mediastinum - adjacent to the trachea, apparently. Given the pattern, it's very unlikely that it's not a recurrence of the previous breast cancer.

I will know much more when I speak with my oncologist, this afternoon. From what I read, this is a regional recurrence - the next layer of lymph nodes out from the original cancer site.

Good things - if it is contained within the lymph nodes, it's a better prognosis than if they are new tumors. The fact that it's within the lymph nodes means my immune system is still fighting the cancer, and in addition that the cancer has not invaded any other organs. Breast cancer is most likely to go next to the brain, bones, liver and other abdominal soft tissue, and lungs. The fact that there is no evidence of any additional metabolic activity in any of those is a good sign.

Also, the fact that the CA-15-3 numbers are not up means that it's not invaded my bloodstream, so thus another indicator that it's contained within the lymph nodes.

Down side - wertperch and the imp are distraught.

I'm fairly philosophical about the whole thing. I'm VERY glad I bullied my docs into taking a second look at that beastly lymph node above my collarbone - proves my intuition is more accurate than their biopsies. (So there!)

The upside of having done the treatment before is that I know what to expect - although the treatment is brutal, I survived, I recovered, and was back to pretty much full health, barring the odd shoulder stiffness and reflux. I've also been getting more exercise, and the tougher I am going into it, the better the results usually are. Can you say, "durable"? And I even still have my own axe and teeth!

So I will add an update to this sometime over the weekend. Sometimes it takes me a few days to process all the medical gobbledygook, and then we'll all know what we are in store for. (For what we are in store?) - We'll all know what to expect.

Love to all,


Monday, June 30, 2008

You Are Basil

You are quite popular and loved by post people.

You have a mild temperament, but your style is definitely distinctive.

You are sweet, attractive, and you often smell good.

Friday, June 27, 2008

the mental dental waiting room

I missed a day of work today.

The reason I missed a day of work is that last night, as I talked on the phone to my darling Sumati, I felt a lump over my right collarbone. Lymph node, I think, and since that's how I detected the breast cancer in the first place, I thought, yeah, better get that one checked out.

Now, if you are not a cancer survivor, you may not quite know what this is like. Greg and I joke about it, he says, "yeah, I had cancer this morning, when I shaved. I cut myself, and when it wouldn't stop bleeding, I think, Oh my god, it's cancer coming back, and I'll have to have....." and your brain goes into overdrive imagining not just the next step, but the next 97 steps.

But the truth is, I'm not in a panic. I'm not in a snit. This time it's much more like being in the waiting room at the dentist's office.

I know it could be bad news. But it's a weird combination of slightly wired and, truthfully, bored. I know, I know, possible cancer recurrence, supraclavicular lymph node, more chemo, more radiation, blah blah blah, whatever. Yawn.

Honestly. I have a lot of fun planned for this weekend, and I am NOT going to miss any of it, or not enjoy any of it, because my brain has decided to kill me. Truth is, if I have a recurrence of the cancer, we'll deal with it. And I refuse, refuse, refuse to waste the next week fantasizing about what will happen if it's bad news.

Did you hear me, Powers That Be? I'm just going to live my life, and enjoy this celebration that's happening this weekend, and frankly, it's about Caroline, it's not about me, so let me just let it be about her. If worries come up, I'm going to pet them, tell them how cute and small they are, and send them on their merry way.

For you information junkies, I seem to have a supraclavicular lymph node that suddenly got large - around 2 centimeters. the oncologists' office sent me in for a fine needle biopsy, but that won't happen for a week - the large and grunchy gears of the medical establishment do not grind at a rapid rate, so now I'm in the Mental Dental Office for a week. So be it.

But in the mean time, tomorrow I'm going rafting, and Sunday is a party, and I think I'll just pass on the whole turning my brains to mush with worries for the time being.

Wednesday, June 11, 2008