One day I will step out of my body, and burst into bloom...

It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.

However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.

The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.

Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.

But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.

Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.

I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.

Fooey.

Love,
grundoon

p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.

The hardest loss of breast cancer

Why I'm up AGAIN at 6 am. Nightmares. I am dancing, and I even went out salsa dancing on Tuesday night - it helps. Trouble is I'm getting really physically exhausted.


I'm going through something really emotionally hard at the moment, and it's giving me bad dreams. wertperch and I have never told anyone else much about this, but back in 2005 when I was first diagnosed with breast cancer, I was pregnant; probably conceived when I was in England. When I wasdiagnosed, the doc said there was no way I could postpone chemo for 7 months, and also no way a fetus would survive the chemotherapy. Probable miscarriage, undoubtedy birth defects, yucky stuff. Adriamycin, in particular, is a class C teratogen. In other words, it can cause severe birth defects. In addition, the pregnancy hormones at the time were causing the cancer to progress faster. I had an estrogen positive cancer, meaning estrogen made the cancer grow more quickly. I also had the most aggressive cancer cells , by staging. Very mutated, growing very fast. "We're going to take a big ba, and we are going to hit you as hard as we can." My doctor said it was pretty much a choice - if I wanted to hang on to the baby, the cancer would probably kill me first. Kevin and I talked about it, and he said I want you more than I want that baby, and Tessie and I need you more. It was a pretty black and white decision at the time.


So I had an abortion. A D&C, about six weeks into the chemotherapy. It was actually about a week after wertperch and I got married, in May of 2005. My doctor kindly postponed it a week, so I wasn't in physical discomfort during the wedding. (Keeping in mind that I was flooded with chemotherapy drugs at the time.)

Well, yesterday the imp saw me crying, talking to a friend in ballet class, and she asked me why - so I told her. And she is furious with me - for not telling her, for not having the baby, for not getting her opinion at the time, for potentially having the baby and dying and leaving her. I realize this makes no logical sense, but it's also a huge loss for her. She wants a baby brother or sister more than anything else in the world. Remember, she was 6 at the time.What is the right time to tell her? There isn't. There never was, and there isn't. And it's bringing up this incredible amount of sadness and loss for all of us, on top of everything else.

Kevin and I wanted that baby so badly, I haven't the words to express it.

The part they forgot to tell me was that chemotherapy destroys both ovaries and eggs. If I had known ahead of time, I potentially could at least have harvested some eggs, in the hopes of carrying a pregnancy later. The chemotherapy made me perimenopausal, so now there's no chance of getting pregnant - and the odds of having bad birth defects if I did are really high. I think the doctors didn't offer it because since my cancer was estrogen positive (then) pregnancy hormones would be bad, no matter when. Now that the cancer has mutated, it's no longer an issue, but it's pretty moot at this point - I'm 45, the ovaries are toast, the eggs, well, what was the old ad? This is your brain on drugs? Chemo kills fast dividing cells, and it doesn't differentiate between those we want, and those we don't want.

Needless to say, I had a rough night. Bad dreams, where I was at an adoption agency that more or less resembled the DMV, and they pretty much just said, your paperwork is not in order, so you can't have that baby. Sorry. They took a picture of my license plate, and the tags were expired, and they would not tell me what paperwork was missing - I "was just supposed to know that". Sorry. Then they'd send me to another line, where every clerk looked like Roz from Monsters, Inc., and they all went on coffee break when I got to the front. You know the drill.

Kevin and I didn't talk about it at all until at least a year later - we were so overwhelmed with all the other emotional repercussions, I think we just set it aside, and left it for later. I finally told a close friend who was struggling with infertility about a year or so ago. Secondary infertility is different from primary infertility, but it's still real, and it was still a loss. Of a very, very wanted baby.

So I'm sad this morning. Weepy. Maybe making a quilt might help. I could make a little baby doll quilt. I think I need to grieve, and acknowledge the loss somehow. Her name would have been Caroline Grace, or Helen Grace, if a girl. Wertperch and I never decided on a boy's name.

I don't, these days, have a lot of fear of death. I'm physically so strong, that any chemical, any radiation, any star wars technology they throw at me, I seem to just sort of bulldoze my way through. I don't suffer a lot from the emotional baggage during treatment, I seem to save that up for when I'm between bouts of chemo. But oh, I wanted that baby.

That baby is the biggest thing I gave up because of breast cancer. Losing a breast was a piece of cake in comparison. Breasts are mostly decorative, and the fake ones nowadays are pretty good. I can even adjust the size, depending on whether I'm doing yoga, or going out salsa dancing, and looking a little more bimbo.

Reconstruction is just not really an option. MORE surgery? Elective surgery? That puts me back in the hospital for a week? I'm more likely to visit Machu Pichu. I think I'm much more likely to get a tattoo of a tough old wisteria over the scar than let them cut me up even more. But I don't know what tattoo to put over the other scar, the invisible one.

Baby, we miss you. I'm sorry.

This post is for Sarah, and for Grace.

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,

grundoon

A temporary goodbye

I said goodbye to my daughter this morning.

She is four. I have never lived with her father: figuring out how to be parents as a team when we never really were a team had been a long road; for the time being, it is relatively harmonious.
She will be gone for two weeks. They are flying to Hawaii, then getting on a Norwegian cruise line, to float around in the islands. Priveleged child, her auntie bought her a new wardrobe for this trip. (Eek!)

---

I've never been to Hawaii. Tessie has been on airplanes more in the four years since she was born than I had until well into my 20s. Her first sail at nine days old, her first airplane ride, at twelve. Days. Old. We flew from Port Townsend up to San Juan Island, just for the day, her, her dad, me, still recovering from labor, and my parents. Although we didn't know it at that point, my mother in the early stages of dying of cancer. It was an idyllic day, walking from the tiny airport into the town of San Juan, checking out the shop and the islanders, who have remarkably the same kind of mein as Port Townsenders, tending toward the fuzzy, mossy, besweatered, bearded and long-haired.

---

This saying goodbye. Goodbye for me, is a hard thing to say. For a moment the goodbye echoes - how can I know, saying goodbye is really for only two weeks? It was still dark, in the early morning, when I walked outside, carrying her, to tuck her into the car seat to say goodbye. And becuase it was dark, I was aware of the potential demons there, waiting, perhaps to pounce on me after they left. Visions of the plane crashing. Her father neglecting her, falling, down, off the edge of the boat, breathing water in. I know these imaginings are just that, imaginings, so I get a comforting book and a cup of tea to chase the demons out of my mind until the sun comes up, when they will not be able to "get" me.

But now that the sun is up, I'm aware of this dull ache, not so much sadness as the feeling of having lost a limb - of something that is so close to being a part of me that I take it for granted, until it's not there any more. The closest parallel feeling I can describe to this was when I left my husband. When I did, it wasn't so much the conciousness of being apart, that was my choice. It was the almost subconcious awareness of something missing; the common vocabulary, memory, experience, the reflection of all the time shared back from someone else that is suddenly, palpably absent. I still also feel this about my mother, who at certain time has a presence more palpable in its absence, that it sometimes was when she was alive. Her art lines my walls; her gifts occupy every niche on my shelves; her life, every niche in my mind. Tessie starts to replace the occupation of these niches....

---

Being a parent is learning to live with an intensity of emotion that is unfamiliar. This small human, who I jokingly named imp/buddha here, has been living up to her nickname. She can drive me to pinnacles of joy, tears of laughter, and tears of rage and defeat all in the same day. I recognise our hideous inadequacy, when faced with the realization that someone is so dependent, that their character is shaped by our hand, our words, our own behavior and very soul. This knowledge would probably paralyze anyone who came into it with full awareness of what they are getting into, but luckily, I doubt that anyone ever does. Loving someone as a parent is loving generously by default. Children are fundamentally selfish. They never know the struggles, the sacrifices, the doubts, that a parent goes through; then they walk away and say, "Bye, mom, I'm going off to college, see you in a year!" without ever realizing that they have walked away with a significant chunk of your soul, and all, all of your heart. If you try to turn a child to your own will to make them into someone for yourself rather than for their own self, my strong suspicion is you will be hoist to your own petard. The more you wrap them up and try to keep them close, the more they will struggle, fight their bonds, try to get away from you.

Conversly, the only way to keep them close is to let them go. My parents were good at this: both my sister and I went off on our merry way, and eventually came to know our parents as friends and colleagues, rather than people to whom we owed duty and who had expectations of us. I think I was singularly lucky in having this, but I never appreciated the challenge it provokes.

---

Tessie starts kindergarten next fall; in the Bay area the choice of, and agonizing over, applying for kindergarten seems to cause almost as much angst as applying for college causes parents in more civilized places. People fight, struggle, schmooze, discuss the pros and cons of various schools and educational approaches. Yesterday we visited a Waldorf kindergarten. I fell in love with this place; in a way it is a microcosm of what I imagine when I talk about Everything, Kansas. The kids are encouraged to grow amazingly as whole people, to learn control of their bodies, their emotions, and their minds. The teachers talk about how they help the children blossom - who is this person, and how can we support them in becoming themselves? A high school senior is there speaking; he is incredibly articulate, talking about being a "global citizen", and being in control of his own learning. I have a hard time imagining a public school student talk like this in front of 60 people; I certainly couldn't at that age.

At one point I leaned over to my housemate, and said the hell with the kids, I want to go to kindergarten here. "The children dance, sing, hear poetry, paint, every day". Can I please spend MY day like this? And your child could too, to the tune of around twelve thousand dollars a year.
I look around the room. There is one other couple who's child is mixed race: mom is asian american, dad is white. Everyone else in the room is white, whiter, whitest....WASPS. I can hazard a guess that everyone in the room is also college educated, probably professional, almost all two parent families (with the exception of my single-mom housemate and me) northern european ancestry. So much for diversity. Waldorf education has an underlayment of privelege, of christianity, of entitlement, that I find off-putting. I long for this for Tessie...so clean, so safe, so touchy-feely, and yet it also scares me. With this choice, will I also take her away from a sense of the diversity, the incredible variation, the great unwashed-ness of human kind? Probably. Will she end up in this lily-white classroom, and come home one day, crying about the fact that she is "different"? Probably. Is there anything I can do to protect her from it? Probably not. She is a future "woman of color"; I am not. I fundamentally cannot share her experience. So I agonize over how to help her, how to take the rough and scraping edges of the world off as much as possible, knowing she will still be hurt by the sharpnesses I don't see, don't anticipate.

---

There is really not a specific point to this rambling: only the observation of my own experience as a parent, loving my child, wanting what is best and easy for her, dreading what will be hard. Saying a temporary goodbye like this, makes me pause a moment on the bigger goodbyes that are yet to come, inevitably. I dislike saying goodbye; friends notice that I have a tendency to disappear instead of saying elaborate goodbyes; perhaps this is why. Within each temporary goodbye is encapulated the bigger goodbyes...which I never, ever, want to have to say.