Friday, December 31, 2010
There are days when this is how cancer feels and cancer treatment feel. The world is out there, and is gorgeous, but I can't get at it. I'm trapped in the cancer cage.
The road to hell is paved with good intentions.
Expectations are getting to me. The feeling of expectations placed upon me, about how I'm expected to be. Be brave. Be on top of everything. Don't be angry. Be supportive. Don't make mistakes. Be clairvoyant about what everyone else around you needs, even when you are exhausted, strung out, have been running errands all day, worrying about money, and have just had a PET scan. Alone. Because apparently your regular cancer buddy is angry with you, and everyone else has conflicts. Even when you are terrified that you are going to get results that you don't want.
Well, the truth is I feel sad, angry, overwhelmed, and hassled. Sorry I'm not living up to everyone's expectations, but more to the point, frustrated that I'm not, and wishing everyone would cut me some more slack. I'm exhausted, very down, and fighting depression. And yes, I have some pretty weird ways of trying to cover it up.
If the lymph nodes are larger, we probably will start chemo again in January. Sounds like I have three choices at least. Continue paclitaxel, which has worked fairly effectively in the past. Try an oral, maintenance chemo, like Gemzar. Up side, not as much hair loss. Down side, probably more neuropathy in my hands and feet, and that is one of the side effects that tends to bug me the most, after only GI symptoms and nausea.
Another possibility would be to repeat Adriamycin in combo with some stronger stuff like cytoxin. I'm sort of tempted by this. A much stronger drug, possibly with the potential to knock the cancer out for longer, since it's been five years since I've had it. Down side, neuropathy, and the possibility of heart damage. I would need to talk through it with Dr L. Also, I don't really know if Kevin and Tess would be up for this. It would knock me out much more thoroughly for about four months, a lot more couch time, a lot less energy. Still, spring is looking fairly mellow from the work end, and we just have PODS to empty and sort in the next few weeks.
Bones ache. Not enough exercise over the break, so the steroid symptoms are worse. Right hand and feet are swollen, and I can't seem to get the lymphedema to go down, so my elbow aches all the time. Puffy face and collarbones.
(I do try not to whine.)
Still, New Year's Eve dance party to enjoy this evening. Dancing may break me out of the cage, at least temporarily.
I don't know. I don't think I can be a badass this week.
Thursday, December 30, 2010
Pierced ear that's infected.
Neuropathy. Tingling in fingers and toes.
Bills. Bills, bills, bills.
Kevin has caregiver's syndrome.
Working part time. (Work is good...)
Trying to start a garden.
A little bit of dancing.
Ballet is brilliant.
Ballet moms are brilliant.
Zazen and breathing help.
Friday, December 10, 2010
Because if you are going to die, I'm going to come see you first.
- Alice Sims -
What's the prognosis?
Jennifer and Karen
No. I'm not. Actively anyhow. Any more than you are.
And I'm often annoyed that you don't have the guts to ask me this, when I can see it in your eyes.
As you all know, I talk about cancer, breast cancer, boobies, cancer statistics..a LOT. I am immersed in the culture of cancer and cancer care, and the bigger argument about health care (EPIC FAIL!) which is still raging in this country.
Sometimes I wish I'd shut up. Sometimes I'm sure you wish I'd shut up. But this one, PLEASE let me answer it for you.
I am not actively dying any more than you are.
Cancer these days, including metastatic cancers, GI cancers, all those nasty things that your parents either whispered about or hid when you are a kid, are now much closer to a chronic disease than the mostly fatal disease that they were back then.
Yes, I'm more likely to die of cancer than you are. But I'm not much more likely than your friend who has diabetes to die of it within, oh, say the next two to five years.
OK. Statistics. If you are an American, you are most likely to die of heart disease. One in two. Fifty percent of deaths, flat across the board. If you've been told you have a heart issue, or high cholesterol, guess what? Your disease is just as likely to kill you as mine is to kill me. Uncontrolled, you may be worse off.
Number two killer of everyone is cancer, all types. Memory is that it's about one in three. Number three is diabetes and diabetes related problems.
But why doesn't a diagnosis of heart disease get the response that cancer does?
My favorite written cancer story is called Grace and Grit. Written by Ken Wilbur but about half authored by Treya Killam Wilbur, it's about their lives, and the five years where they lived with breast cancer, and eventually diabetes as well. She was diagnosed right before their honeymoon, and the two of them lived with it during their entire marriage. This sound familiar to anyone? Its authored by Wilbur, using a large number of quotations from Treya's diaries. Wilbur has been writing for years about the perennial philosophy, and so their story is woven in with his own early philosophy. But they also went through it in the 80's, when breast cancer was killing more and more women.
One of the things Wilbur nails is the difference between the disease and the illness . The disease is what is happening physically in my body, and what that does to me. I have some cells that won't behave, that have learned NOT to stop growing and dying, and sometimes their growth interferes with other stuff, so I have to try and control them.
The ILLNESS is the vast cloud of cultural beliefs, myths, and gobbledygook that surrounds the disease. Pink ribbons, for fuck's sake. (Gag me!) The idea that it's always a fatal disease. Pity, fear, misunderstanding, the fear that it's contageous. Asshattery. Sympathy, support. Misunderstanding. Judgement.
One difference from heart disease or diabetes is that often cancer patients look like shit. Chemotherapy can be fairly obvious, and believe me, we don't just look half dead, we feel half dead. And that's pretty much now it works. Chemo kills you part of the way, killing the cancer at the same time, and then we hope that your body and immune system can rebuild itself over time from half dead back to mostly alive, without the cancer. The basic structure of this has not changed since the 1950's, and it's how almost all western cancer treatments work - chemo and radiation in particular.
Radiation for the chest for me was worse that chemotherapy, but gamma knife surgery was a piece of cake, other than taking steroids. Right now, I look in the mirror, and it bugs the shit out of me. My face is puffed up from steroids, and I joke with wertperch. The last chemo I had, strangely attached to, yes, HAMSTER protein (Nanoparticle Albumen Bound paclitaxel, an experimental drug, for those of you who like the fancy stuff) must have backfired, and I am slowly turning into a hamster. Steroids make you puffy, and over time they can make you grow more hair, so no whisker jokes, please....)
I know, I know, I'm rambling, but I'm trying to get there.
I. Am. Not. Dying. Any more than you are. I am living with a disease that to some extent can take over your life, but truly not dying.
There are about 120 women with metastatic breast cancer who talk on a a popular web site, and one of the things we constantly bump up again is that people have trouble coping with the question they can't ask. How long have you got? What is the prognosis? HOW SOON ARE YOU GOING TO CROAK? In the four years that my mother was dealing with ovarian cancer, exactly one person asked her that, and in the almost six that I have, exactly no one, until last week. Clever Jennifer, a nurse, asked what IS the prognosis? Thank the STARS! And wertperch once in a while gets the pitiful "How long does she have?" Sometimes he answers, sometimes he walks away, depends on the particular social graces and timing
But you know what? I can see it in your eyes, the moment when you want to ask me that. And geez, go for it. What's the prognosis?
Fifty percent of people with metastatic breast cancer die within two years. (pre 2002 - 22 months.)
Forty percent of people SURVIVE for five years.
Eighteen and a half percent of people are alive after fifteen years. (pre 2002 - 3 percent.)
Now stop. And think VERY carefully about the bell curve that this forms.
Half of patients die within two years. All the rest, except ten percent, go at least five. Why?
That is what statistically is called a long tail. The top of the bell curve ramps up really fast, and then the slope down is long and gradual. WHY? The ILLNESS, not the disease. My friends, I am GOING for the long tail. Fifteen years, just stay out of my Amazon freight train way.
My oncologist says he can pretty much tell how someone is going to do in the first few months of treatment. Or the first time he meets someone. About half the patients give up at the moment of diagnosis. They think Cancer = Fatal =I'm going to croak.. and they proceed to croak, treatment or no treatment. The other half say, Right. I'm going to fight. What you got for me? And a sensible physician, like Dr. Rosenberg, says we are going to take a big bat, and we are going to hit that sucker HARD. (And man, did they.) And the fighters tend to go on and on. They repeat chemotherapy. They repeat radiation. They do hormone therapy. They do clinical trials. And in the most recent study, which ran from 2005 to 2010, proves that it works, people routinely live with breast cancer for 15 to 20 years, or longer.
Breast cancer, unlike, say, ovarian cancer is typically extremely responsive. With ovarian cancer or stomach cancer, still, if you have it, and then it RECURS, you are probably going to have a tough time. They are resistant to a lot of chemotherapy drugs, with only a five to ten percent response rate. So they stack them up, and still only 30 or 40% of patients get their cancer croaking instead of saying, HAH, I am in your base, ignoring your chemo! Whereas breast cancer has a ton of good chemo agents, and you can stack those suckers up. Gemzar. Cisplatinum, and all the other heavy metals. Thalidomide. Now, as you go down the line, the side effects get nastier, but still. THEN you can do clinical trials. Right now there's one trial, for 30 women, where they will CUSTOM design a drug for the particular protein in your PERSONAL tumors! Designer drugs! I don't qualify, but man, how cool is that? We could get Ralph Lauren to sign on and design the hospital gowns, and people would beat a path to the door. If I qualified, I'd sign up right now.
The down side is, no one knows this side of the story. So we often get, shall we say, a misguided reaction? More and more, the blog I'm writing is about the story, and the fact that NO ONE has done what we are doing, which is living with this stuff as a chronic disease, rather than a fatal one. AIDS is similar. It is no longer considered a fatal disease, because of amazing treatment developments. Some of the side affects of the treatment are nasty, and the sociocultulural illness structure is undoubtedly even worse than cancer. A stigma within a stigma. "What's the hardest part of telling your parents you have AIDS?" "Explaining to them that you are Haitian." Did you know your jammies don't go with your lesions? Well, at least I don't have CANCER. (It's possible those jokes are way out of date, and no one else will get them. From when AIDS was first appearing, about 30 years ago.)
We are, none of us, dying of cancer. We are living with it, our families are living with it, our children are living with it. Some days we cope with grace, sometimes we just cope. Elizabeth Edwards' death was hard on us. It was a reminder that in spite of how groovy we are, and our good attitudes (SMILE OR DIE) and our juicers and our raw food diets and our gin and margaritas on the sly, that this could get us, eventually. That we could do everything right, and still croak. And these gals are the tough ones - they are, like me, living with lesions in their chests, heads, livers, bones...pain, side effects, loss of function, etc. They have trouble getting in and out of their bathtubs. They might walk with a cane. But they are badasses, to a dame.
And man, do they have GUTS. Grace, AND grit.
But truly? There is nothing worse than no response. If you want to know, ask the question. A stupid question, or a silly one, in my book, is far better than nothing. And really, that is a polite way to do it - "What is the prognosis?" is just FINE. Just think about your timing, I'd sort of prefer you don't ask me in the grocery store. Two other useful questions - "How are you TODAY?" Is far better than "How are you?" You might illicit far more info than you want with the latter..and, "What's new?" Is great.
So there you go. Prognosis - good. Side effects, sort of gnarly at the moment, but whatever. I won't look like a hamster PERMANENTLY. Family drama, a little over the top, but winding down. Work, fantastic. Weather, lovely. Fine, thank you, how are you?
Wednesday, December 08, 2010
hellish weird appetite
Did I mention insomnia?
Other stressors -
All three of us with local creeping crud
Garage sale planning
Me going out of town
Nutcracker - fun, but stressful!
Oh wait - gamma knife radiation?
Bank account with fraud issue
Fake cashier's check
Close friends with a death in the family - brain cancer, glioblastoma
Other than that...Doin' dandy.
Monday, December 06, 2010
Wednesday, December 01, 2010
It happened a few days ago, and again this morning, after one bout of being up. I managed fall asleep a second time, which doesn't always work, but the had an extremely odd dream.
I'm really grieving. This last round of no cancer/cancer feels like whiplash, and also has given me a real emotional smackdown. We had ten days. Ten days where we were told, and we got to hope, that I would be cancer free (or at least between treatments, and No Evidence of Disease). Then brain metastasis number two popped up.
And I wonder. Is this the new pattern? After the first round of breast cancer, and all the nasty treatment, I went on tamoxifen, and went three years almost to the day before a rediagnosis. That bumped me up to Stage 4, and metastatic breast cancer. Meaning we can treat it, but the odds of it going away all the way are slim.
I did chemotherapy again, and went another 9 months, and then the third round - and the cancer had travelled from chest, breast and lymph system over the blood brain barrier, and we faced up to brain mets and gamma knife surgery. I also repeated chemo for the third time, to treat cancerous lymph nodes in my shoulder, chest and along the trachea.
Since that surgery and chemo, chest appears to be stable, but the second bratty little brain squid reared it's little pointy head - approximately eight months after the first. HOWEVER - it appears to have popped up visibly on the MRIs in the space of about 6-8 weeks. Slowly, creepingy, it speeds up. It sneaks in, and takes over. Sooner or later, I stop hoping for a break, and start imagining continuous chemotherapy, more rounds of gamma knife, being on the steroid for the rest of my life...
Dearly beloved, I'm TIRED. And grieving. I'm grieving for my family, who never get to have NORMAL. They have me wired on steroids and irritable, exhausted from treatments and too many doctor's appointments, worrying about money all the time...
Denial, grief, anger, bargaining, acceptance. It's not once, but over and over that you recycle these emotions. I feel as though all my fuses are blown. The only two that are operative right now are grief and anger. I cry in the car. I cry in the shower. I cry over silly dramas that people create around me, and hurt feelings, and feeling misunderstood.
And I cry about letting go.
I don't think I get to see Tess dance the Nutcracker 10 years from now.
Most of the time, I am an optimist, a fighter, a person who is taking this on as a chronic disease. Who will handle the treatments they throw at me, try new stuff, do clinical trials, inject hamster proteins into my veins to fight this disease. But at best it's a stalemate. I no longer believe I can win.
And at what point is enough enough? Do I say, I can't take this any more, please let me stop? No more treatment. No more radiation, no more chemo. Now I just get to be comfortable, and enjoy the time I have left. It's not now. It's probably not soon. But it's coming.
I see the question that no one ever asks in their eyes. They ask about the prognosis, the treatment, the timing. What they really want to ask is, how soon are you going to die? Do you know? But no one asks, it's way too socially incorrect.
No, I don't. I know the stats. I know the pattern. Nobody knows when they are going to die, your doctor doesn't know when HE is going to die. But the part I know that most people don't, is that with metastatic breast cancer, there's a choice. Most women do not exhaust all the options they have for treatment. With ovarian cancer, if it comes back, it's usually as refractory disease - in english that's cancer that does not respond to most or any chemotherapy. Breast cancer has dozens, and it is generally considered "responsive". But women..just run out of steam. Choose to stop treatment. And having seen two people through it, I know what happens next.
So it's possible that I have a much clearer idea of when and how I might die than most people.
And it is making me cry.
Wednesday, November 24, 2010
Saturday, November 20, 2010
Friday, November 19, 2010
I went to the ER yesterday because of double vision and cloudiness in my right eye, rule out a subdural hematoma, and more swelling from BOTH brain mets. Dang SQUID BRAINS!
To two friends with metastatic breast cancer: I have 12 lymph nodes currently involved, right collarbone, trachea, and last summer one under my left arm and one in my right hip. Everything is currently stable, but the are sneaky little buggers, aren't they?
Jeannie, my dear, I prescribe eggnog, and a fire, and a REALLY good book. Pure self indulgence. I am sewing tutus for little girls who will be doing the nutcracker next week, including TWO for me, one for the teeniest little ballerina you've ever seen, my girl who is 12, and a couple of ther people. My whole adult ballet class showed up yesterday either in costume, or in tutus, just because I asked them to. Princess dresses make me feel happy, as do magic pink toe shoes.
I'm feeling really sad about some drama over this past week, and loss of trust in a couple of relationships that are extremely important to me. I hope they will mend over time, since I seem to lack the energy to mend them myself. I've cried a lot.
I'm enjoying putting up my tarot cards. Several are really complicated, and some are very simple. I love hearing reactions, and Kevin finds some of then very creepy, like my poetry can be creepy and disturbing. This is probably ok; cancer is creepy and horrifying, as well. Not all tarot cards can be positive. I've been pulling the hanged man, the tower, death and the devil a lot lately in the old italian deck. Nothing really means the obvious choice.
Wednesday, November 17, 2010
Sunday, November 14, 2010
Gamma knife went fairly smoothly. I'd forgotten how unpleasant having the halo put on was. They really ratchet that sucker on tightly. Once it's on, it's not that big a deal other than it makes your head heavy. The MRI seemed to take a long time, and it was uncomfortable because my back was sore. The gamma knife itself? Seven minutes. Sort of anti-climactic. Extremely. I was really scared about this one.
The MOST unpleasant part, in my opinion, is when they take the halo OFF. Fifteen minutes of intense, insane pressure headache. I was rubbing my forehead, covering my eyes, and still so painful that I thought I might hurl. But then the pressure evens out, and it goes away. It's a pretty miraculous technology.
Up and around that afternoon, hanging out with friends in a lawn chair in the living room (I wanted to prop my feet up....And four bruises on my skull, two in front, two back in my hair. I hope I don't lose any hair permanently. The steroid didn't seem to make me nearly as hyper, I got two decent nights' sleep. I did fall asleep during last night's ballet, as well, but it was sort of...not dull, but repetitive. Great dancers, I was just too exhausted.
Not too bad a case of the jitters. It may be that I've already adjusted to the slightly higher dose that I'm on. Very curious to see the next MRI, and how that one looks down the road. Dances with SQUIDBRAINS!
IF anyone sees adult tutus or long, full prom dress at their local second hand store for under 10 dollahs, send them my way.
Hugs to all,
Tuesday, November 02, 2010
I really, really hate the gap between a new diagnosis and when the treatment begins.
I'm scared and angry and grieving. I'd rather have cancer recur any place except my damned head. Short term memory is wonky, verbal is slightly wonky, balance is wonky, right eye is wonky, right hand and foot and now LEFT foot are wonky. I keep getting that weird twinge where it feels sprainy for a second, and then sort of goes out from underneath me. Like if you get up too quickly with your foot asleep. It would be smart of me to walk with a cane all the time, but I'm resisting it, in spades. No doubt when I fall and sprain an ankle I will smarten up.
One of my doctors got in touch with our local hospice on Friday, to help me. Among other things, they have support groups for kids and caregivers, and can assign a social worker for all sorts of other stuff, including financial advice. So we're exploring it. But for the time being I also want to continue treatment, and participate in clinical trials, because the neuro people now are saying I'm becoming a statistical anomaly. I can't use all the hospice services and continue active treatment at the same time.
Clear chest, but cancer cells crossing the blood brain barrier, little squid bastards. The next hump statistically is 2-1/2 years - half of us MBC survivors have croaked at that point. That date is April 5, 2011. Five years now is 40% survival, same as ovarian cancer, 15 years is 18.5% survival. That's a lot better than 3%, which it was from about 1980 until some time in early 2000. The 2005-2010 study looks a whole lot better. Three percent is the same as spontaneous remission - they all croaked by 15 years, except those lucky few who had the random spontaneous ice cream sundae.
I always ask for a best and worst case scenario, and although my oncologist generally won't go there, my dear primary care physician and radiation oncologist will. And the radiation guy, Dr. Harvey Wolkov, he's probably seen more of these than anyone else. He's hot shit, and a nice person and a geek, to boot. He has an adopted girl from China who is the same age as Tess, and he generally walks me down the hallway because we are enjoying our conversation so much. So he'll give me the straight dope about how people he's had in the past LIKE ME have done, and the range of prognoses.
The other straight talker is Christine, the head nurse at the infusion center who's been my boss nurse since back in 2005 when I started. She is totally straight, and gives me no bullshit. She's the one who said, "Chris, at this point it's not about getting healthy again, it's about breathing or not breathing." I laughed, and said by that standard I was doing FINE. It required a shift in perspective.
But she had one patient, diagnosed when her daughter was six, who wanted to see her girl go to prom. Did TWELVE rounds of chemo. And I thought I was tough for doing THREE. Now, I don't give a fuck about prom, but I have fairly strong motivation to get Tess first to 14, and to 18, when she gets out of high school.
I was in my cave for the last 10 days because basically all the docs who really knew anything were on vacation. How dare they have lives. My neuro guy was on vacation since August, so I saw the PA, whom I respect but don't particularly like, and she doesn't much like me. Condescending. When I argued with her about upping the steroid dose, she turns and said out loud as she typed, DECLINED RECOMMENDATION FOR STEROID DOSAGE. Snot. Now I'm up to 6 mg a day, but it pissed me off. So much for being proactive about my own health care. But then I got to talk to Stan, who is the coordinator of the gamma knife team, and he addressed most of my smaller questions about risks and benefits that you raised. They will be keeping me throughout the afternoon, to monitor the edema and such. Going home in the evening, not right away.
And right frontal lobe can affect executive decision making as well, so the doctors all have releases to talk to each other and Kevin if they see a sign of weird behavior. No credit cards or driving for this girl until further notice, and I'll tell you the loss of that autonomy is not a small thing. And drugs with mood side effects really, really bug me. I almost feel like handling chemo with all it's bleckiness and nausea and pain is easier to handle than the steroid, but I might not say that if I were in the middle of it.
Sucks to be me! (Just kidding.) Some days we cope with grace, gracias a dieu, some days we just cope.
I know I switch in and out of different coping mechanisms, and the website is a place for me to seriously indulge in displacement behavior. I tend to only grieve in private, that's why I so desperately wanted a week at Matinenda to myself. It worked, even though I had three days where I mostly just wandered around and cried.
We cope. Please let the next week pass easily, and bear with me if you come for a visit and I'm wearing a big princess dress. Playing dress up with the little girls, hanging out with the big girls, and doing ballet are what keeps me sane.
Friday, October 22, 2010
I've repeated chemo three times, and expect to repeat it in the future. I've fought HARD for a chemo that doesn't cause side effects I don't want. I'm currently on paclitaxel-NAB, which I know I have a response to, AND doesn't cause much neuropathy. (BTW, I understand that it's not the taxol drugs that actaully cause the neuropathy, but the solvent - ie petrochemical, that they are delivered WITH. LOVELY. Taxols don't cross the cell wall very easily.) I have a very agressive cancer cell, and think that western medicine is part of the solution for me.
I don't follow any sort of strict version of juicing and cleansing. I'm firmly convinced that cancer is an autoimmune disease, and that all the western meds exacerbate that - whack the hell out of your immune system, and then hope that you can come back from half dead. It's amazing to me that our systems are strong enough that we can DO this - not just once, but repeatedly. So anything I can do to boost my immune system during and between times, I do.
I try to listen VERY carefully to my body and it's cravings. Right now I crave fish and shellfish -and I'm dealing with brain mets. Omega-3 fatty acids! Strange trace minerals in shellfish. I ordered shellfish the other day at a chinese restaurant...and I ATE THE SHELLS. Pretty soon I'm going to be eating ants off the benches in the park, or something even more completely random. Whatever. If I really need formic acid, well, so be it.
Lots and lots of exercise. I started ballet about three years ago, and age 42, and a year later started dancing on pointe shoes. I'm heavy, tired, and I have crap knees, and there is nothing in the world that will get me out of bed like Thursday's class, when I get to wear those magic pink shoes. Find some kind of dance or exercise that you adore, and can get completely addicted to.
I was diagnosed when my daughter was 6. She is now 12, and I was just diagnosed for the fourth time - second brain met, which we refer to as Brain Squid. (The first one was bigger, this is just a baby squid.) So I'm having gamma knife radiation in November. A certain amount of my decision making is based on her. I will throw anything and everything available to me at this beastie until she is 18. And recently survior statistcs for metastatic babes like us have gone way up. Instead of 3% alive after 15 years, we are up to almost 19 percent! So now instead of gunning for another 6 years, I'm going for at LEAST 15.
I also recently got in touch with Stanford, to look into clinical trials. Not so much because I'm running out of options, but because there are few enough of us that I make an excellent guinea pig. If I stop responding to paclitaxel, next things in line are Gemzar and heavy metals, like cisplatinum. Yick. But any of us who have survived with mets for more than two years are ALREADY beating the odds. That means you ALREADY HAVE figured out something that you are doing that the DOCS haven't. So most of all, trust your own intuition about what you need, and what you want. I also believe in getting advice before I decide, but once you've made a decision, ask for pure support from those around you, even if they don't agree.
Thursday, October 21, 2010
Preliminary diagnosis - new brain tumor. Number two in a set. Six millimeters.
Thank goodness for a week of being able to report in cancer free, last week.
Dust off your titanium colanders, everyone.
Well, we saw the PA in the neurosurgeon's office who kind of gets up my nose, but she's smart. Showed me the piccie, and I'm scheduled in for another gamma knife surgery on November 11, with the same team. The lesion is 6 mm, fairly small. I'm supposed to get a call back from Laptalo's (my regular oncologist) office, and apparently this is not as schitzo as it feels - the chest stuff IS looking really good, and once a cell has crossed the blood - brain barrier it can start to grow really quickly. So I'll have a PET scan, and then an MRI on the day of gamma knife. No chemotherapy in the offing, thank goodness.
My auntie Pat and uncle Jimmy are coming to visit from the 3rd to the 9th, and I'm going to ask them if they can stay a few extra days.
I'm hanging in, not sleeping wonderfully, but whatever, about like usual. I recently got on touch with Stanford to participate in clinical trials, since I'm rapidly becoming a statistical anomaly. I'd really like to be able to help out other metastatic breast cancer patients, and people like me they can use for trials are a relatively small pool. I'm on deck for one a sleep study - where I go down and sleep in a fauncy hotel in Palo Alto with sensors all over me. Not too rough. Apparently insomnia after chemo and such is a really, really common problem. Then I can be in line for new chemotherapy trials as well, if we need it down the line.
I'll put updates on the blog, as well.
Saturday, October 16, 2010
Now, if you are a parent like me, you waffle, come out with something fairly ludicrous at the time. Typically, I would then go away, bang my head on my desk, think about what I SHOULD have said, and wait for the next opportunity to do a better job. It's rough, but it sort of works.
Couch this in the fact that this particular 12 year old has been dealing with the chronic disease and possible death of her mother for 6 years - exactly half her life, and most of her memory. This is a kid who not only has good coping skills for her age, but may have the best balance of any 12 year old I know. The best balance of any PERSON that I know. She continues to be the imp/buddha in my own personal sphere.
This question is not without thorns. And horns.
So I waffled, and hemmed and hawed, and came out with some random unconnected stuff. The bardo. I DON'T KNOW (Which was probably the truest thing I said.) Christians think this, unitarians think that, zen buddhists, I WISH this to be true. Gurgle. HELP! I'a total wuss and can we talk about this later? Then, thank goodness, we got talking about the avatar cartoon, and the subject wandered off topic.
Is there such a thing as a good death?
I think there is. My grandmother died at age 94, and demonstrated growing old with a lot of grace. She lived for almost 25 years after her husbands' death, and they had just celebrated their golden anniversary. 50 years married. 25 years after.
My mother died at 61, of ovarian cancer. She demonstrated NOT getting to grow old with quite a lot of grace. That story is told elsewhere. But I was there, and being a cancer survivor myself, it's not to hard that my own death will be similar to one of these. The option of being completely healthy until 80 years old, and then dropping dead in my sleep option has already passed me by.
So what will I say next time she asks?
The answer I WANT to believe comes in a lot of forms. Our Tess, for lack of a better term, seems like an old soul. Lots of this stuff I don't BELIEVE believe, just as I'm not sure I believe in love at first sight. Still, this one resonates with me.
The Tibetan Book of the Dead talks about the bardo, the state between things. You get to hang out there between death and rebirth, between waking and sleeping, between meditation and not. In the bardo with the other souls, you make a pact with your friends about what you are going to do in the next life, and plan out the relationships. You also generally get to hang out there, and rest, for as long as you want. Unless, of course, you have achieved nirvana, gotten off the wheel of suffering. Then you get to pick if you want to stick with it, or move up to the next level, or go back to help all beings achieve it.
What is the relationship that I have with my girl, and what pact did we make about being here together, as a mother and daughter?
I want her to remember this, down the line. That I never knew what would happen after death. But that I will still be around her, in some way, even if it is memory. Memory, there is really no only about that.
If I get to pick, this is one I want to believe. It may be a story, but it's a story that helps me inform how I want us, want her to see this, to help understand this process.
Death is not imminent. My recent health stuff has changed, and has turned a lot of stuff on it's head. Cancer statistics, which I can rattle off when asked, pointed to me having pretty low odds of surviving another five years, and that with repeated chemotherapy, and eventually continuous chemo. Not two words I happily put together. Recent tests ALL show huge improvement. Recent studies show greatly increased survival with metastatic breast cancer - like going from a 3% survival rate at 15 years to almost a 20% survival rate. This is good. I am on a medicine that I hate, an that make me feel likea train wreck..and ALL external indicators are that my cancer is going away. Who knew? Everything Changed, and I'm still making sense of the changes and the new information.
What story would you tell the help explain this stuff to your girl? Tell me of the nature of death, as you might in this circumstance.
From Tibetan buddhism:
1. Recognition of all beings as mothers. Understanding that we are all caught in the continual cycle of existence, it stands to reason that everyone you ever meet was once your mother in a past life, or will become your mother in a future life.
2. Mindfulness of kindness. It is important to be mindful of kindness in all its forms; not only in its recognition, but in its effect on the treatment of others.
3. Thought to repay kindness. When kindness is extended to you, you must be thoughful to repay that kindness.
4. Love. Because all beings are past mothers, one must generate a feeling of love toward all beings.
5. Compassion. The wish that all beings be separated from suffering and the causes of suffering.
6. The unusual attitude. "I alone will free all beings from suffering and the causes of suffering."
7. The altruistic aspiration to enlightenment.
Thursday, October 14, 2010
I grew up in mining country. News mostly isn't. Good.
And happy Metastatic Breast Cancer Day, although the happy at the beginning seems like a bit of a misnomer. Cheers for all survivors.
Friday, October 08, 2010
Cancer treatment and testing, somewhat oversimplified, is generally not about good news.
Especially when you've been doing it for a while, there tends to be a generally binary state of affairs - things have stayed the same (good) or gotten worse. (bad.) You get actual GOOD good news once in a while, but not very often.
Recently, I had a test where I got actual good news, and I have to say I'm not quite sure I believe it completely. Let me see, dearly beloved, if I can give you a feel for this.
You have a lump under your arm. Get breast exam.
You have a breast exam. Could be something suspicious.
You have mammogram. Could be lump. Biopsy, yes, it is cancer yes, there are two tumors, yes, lymph nodes involved, yes. You have shot from cancer free on February 24 to Stage 3 breast cancer in just about two weeks, and have surgery on March 17.
Every test, of that series, was not just yes, sorry, you have that, but yes, we need to do another test to see if it's worse than that. Yes.
Chemo, radiation, bal bla blah, most of this is in other places. This is a five year back summary,you go look up the details.
2006 and 2007
Tamoxifen, and a bit of a breather. About a year to return to a normal sense of "health", and oooorg, mammograms. Looks about the same. Yay!
Suspicious bump over my right collarbone, fine needle biopsy. No cancer! Cool! Go off on summer vacation.
Get back in September. Bump is bigger, nice results, and I don't entirely trust the test. Bully doctor into gettin re-tested. Core biopsy. Yup, there's cancer.
Ocober 5, 2008.
DiagnosisRecurrent breast cancer. Spreading through the lymph nodes behind my collarbone, neck, and chest. Oddly enough, I finished radiation on October 4, 2008, so if I'd made it five years, we would have celebrated that date in 2010. Identifed the recurrence three years to the day after.
This is now recurrent, metastatic cancer. October until March, 2009.
Chemotherapy again, and being something of a viking, I go 15 rounds instead of 12, in the hopes of whomping it out completely. Looks pretty good. We all know that the chances of getting rid if it completely are pretty slim.
MRI, CT scan, or PET scan now every three months. Cool piccies of chest, but ooog, those lymph nodes. Same, same, same.
2009 and 2010
January show up for a regular checkup with oncologist, and I've been having a few more headaches. He said the anti-magic words - ' "It's probably nothing but..." let's rule out brain metastasis.' Now, every time in this whole series, any time a doctor said, It's probably nothing but.."it's like a whammy....iiiiit's been something. a lump, cancer, a dvt..and I went, aw, shit. brain tumor.
Sure enough! Littlle boogers had crossed into my brain - a tumor about the size of a cherry. No wonder I had headaches. So the new adventure of gamma knife radiation, and my new favorite doctor title, medical physicist. My rocket scientist can kick your rocket scientist's ASS. And did I mention the lovely headgear?
Waiting, testing, pretty piccies of my brain. The odds of having cancer go completely away when you have metastatic breast cancer are roughly on the order of 3 percent. You don't talk much about it going away. You talk about maintenance. You don't talk about retiring at 55, but you get your paperwork in order.
Flat rate - 50 percent of people diagnosed with metastatic breast cancer die in 22 months.
Just for fun, lets round that up to, say, two years. Where does that put us from October 5, 2008? Oh, yes, 2010.
October 5, 2010. I had a CT scan on October 4. By pretty much finagling, and brutalizing my doctors by phone, I manage to get preliminary results.
The CT scan shows no evidence of recurrent or metastatic breast cancer.
Caveat, caveat, caveat. This has not yet been compared to the previous scan.
If this is true, it's a BIG improvement. The little baddie in my brain is slowly fading away, exactly as it's supposed to after gamma knife treatment. If this is TRUE, it's actually a radical IMPROVEMENT.
For three days, I can say, for the first time in five years, some doctor just told me I don't have cancer.
As I said, in a couple weeks we get more detail, this many not be strictly true. In the mean time, I'm enjoying the hell out of saying it.
So this bald girl walked into a bar.....
Wednesday, October 06, 2010
Tuesday, October 05, 2010
Unfortunately, I have a head cold, and I physically feel like death warmed over.
Fortunately, I had a CT scan yesterday, and as of this scan, there's "no evidence of recurrence or progression of metastatic disease." (Translation - my metastatic breast cancer has not visibly grown or changed since June. I seen the piccies. There's a slight possibility it has gone more away....)
Unfortunately, I feel like hell.
Fortunately, I also feel about a thousand times better than three days ago. Three days ago, there was a distinct possibility I'd be starting chemotherapy for the fourth time, that is now very unlikely, three months out at the soonest.
So despite the head cold, I feel wonderful. Yes, head cold. No, cancer. For now.
What makes you feel fortunate?
Sunday, October 03, 2010
The following is just a kvetch and rant - I don't need you to do anything, I just need to get it out of my system.
I am tired, cross, and hating cancer and treatment, and everything that goes with it. If anything, for me, dealing with being on a steroid is at least as awful as being on chemotherapy, and it's looking like three more months of the steroid...and if this CT scan doesn't go so well tomorrow, I get to restart chemotherapy also.
The last two weeks have really sucked beyound belief. I had a seizure...I can't drive for three months. It took almost two weeks for them to get my e-mail going at work, so I'm behind just a little bit. We're trying to move in, paying bills, getting Tess going in 7th grade...and I feel like I'm gritting my teeth with exhaustion and rage every moment.
Last week I came down with a cold. The house is in chaos. Getting a cold is usually my body's way of saying, "Tougho lucko, kid, You are in bed for three days, and all that emotional baggage that you haven't been dealing with? HERE IT IS." Sooo, just for fun, on top of everything else, I was up a lot of the night, and what I mostly want to do is cry and kick things. Rage and grief, oh GOODY my two MOST favorite emotional states. (Sarchasm, and I do mean CHASM). I need some walnuts to crush, bottles to break, and large, dangerous firearms to discharge in a safe and remote environment. Anyone have a recommendation about dispelling anger in a way that doesn't slop it onto other people? Anyone got something they want blown up?
The steroid is rough because it causes emotional and mood side effects ALL of which I dislike in myself. Hypes me up. Makes it harder for me to listen. Puffs up my face which I KNOW sounds totally trivial, but in this strange way, its not, because it's a constant reminder, everytime I look in the mirror. Hullo, hyper cancer face! How are you? Bloating, weird appetite, irritability....I know part of the irritability is fromn the steroid - but I'm not sure that knowledge makes it any easier to manage, emotionally.
Not to mention the insomnia from hell. I average four hours of sleep at a time. Friday I slept for seven, and that's the first time I remember sleeping for seven consecutive hours since...probably mid-june, when I went on the steroid? At matinenda I was typically getting four at a stretch. So add constant sleep deprivation to the rest of the list.
I feel like I can cope with most physical side effects, but the mood and emotional stuff is a bit much. Stay the hell out of my PSYCHE, you drugs!
I cope and I cope and I cope. And right now I really wish I didn't have to. I know if I have to start chemo I'll manage. Waiting to find out is hateful.
I should know by the end of this week what the regimen is, and there's a chance that chemotherapy combined with the steroid will be slightly easier than either alone. ( I know, I know, unlikely - and if you know for sure, don't tell me. Idle hope is the last refuge of...)
But the layers get thick. Not the treatment itself, but the ripples out from it. I can't drive for a while - suddenly I have to find car pools, Tess has no pickup from ballet, any errand I have to do either on foot or bike...blah blah blah.
I just got eyebrows. I really don't care about hair, but I love having eyebrows.
I don't need any of you to do anything about this.
I just needed to vent, and have you nod, and either say we understand, or we don't really understand, because we aren't in your shoes, but it's okay for you to tell us this, to let us see the rage and grief, as well as the courage and tomfoolery.
The other thing is next time we bump into each other, if it's just the two of us, ask me if I need a half an hour to vent. I tend to mostly keep this state to myself with more than one person around, so from my end it requires a quiet cup of tea, not a party. And while I'm at it, if you don't know me personally, ask someone around you, who is dealing with chronic disease, if they need to vent. You might be surprised by what you learn.
Friday, October 01, 2010
One of the non-profits NOT backed by large pharmacy. I look for the word prevention. These and Young Survivors Coalition currently get most of my $$ and volunteer effort.
More later, this publication just came out.
Tuesday, September 21, 2010
My right arm started to twitch, and I was having trouble typing. I went into the bathroom to take one of the drugs, and then my right arm REALLY started to twitch - it was jumping up and down..I also started to get dizzy. I went in to the kitchen to call 911, and by the time I got there I was losing my balance. I started to dial with my right hand, and realized it wouldn't work. I dialed 911 with my left, and then my whole right side went out from under me. I heard the dispatcher asking what was wrong, and then it was like a huge electrical shock.
Next thing I knew, there were seven GINORMOUS policemen at the door - all the dispatcher heard was me yelling before I passed out, so they were expecting a home invasion. I managed to bite the hell out of my tongue, too.
No doubt Village Homes has not seen that many cop cars in a while - five, and two fire trucks - way to make an impressin on the new neighbors. So I went to Sutter in a ambulance with a VERY cute paramedic and a grumpy blond paramedic, and had another CT scan, and the swelling around the brain tumor is back up.
I can't drive until the Doc and the DMV clear me. Dog my cats and rowrbazzle.
If I have another one, I'm supposed to lay down on my side until it's over, and then head for the ER. I'm on a new anti-seizure med, so hopefully it won't be an issue, but the driving will.
So other than that, Mrs. Lincoln, how did you like the play?
I'm a little frustrated. I was really wishing for a short BREAK from medical foo foo raw.
Friday, September 17, 2010
So amongst other things, in the three weeks since I got back, I've scheduled 12, that's twelve doctor's appointments. Yes, I managed to schedule several in two differend places at the same time.
- Primary care doc (She's the lucky dame who gets to coordinate the care of all the other docs.
- Hand therapy for lymphedema
- Neurosurgeon, to check on the progress of the brain tumor
- Port flush at the infusion center, although a fantastic conversation with the head infusion nurse. She has an amazingly clear head.
- Occupational therapy
- CT scan
- Neurologist, to try to adress the side effects of the tumor edema
- Back to primary care doc
- Ultrasound to check on DVTs
- And do I remember the other one? No.
This did not fix the headache.
I am not a regular sufferer from migraines, I've had about two or three in my lifetime, one after a bike wreck, and one after helping to refinish a hardwood floor. But I get all the classic stuff - auras, little swimmy dots in my field of vision.., and nausea. Instead of getting back in the car, I went and lay on the grass outside of Time Horton's.
Now remember, gentle reader, that we are right nest to the Buffalo airport. Behind me is some monstrous 6 lane roadway. Not the nicest picnic setting.
After a whole, we decided that I was probably not going to get back in the car that day, and Sumati went to see if we could crash at a nearby hotel. They had a room, and apparently wanted to get me off their lawn, so I went and lay in the dark, and S went to the bar and let strange men buy her drinks.
The headache did not go away.
So I talked to the doctor's office in Cally. My doc was on vacation. The acting doc said I needed to go in. I replied that I maight have some difficulty with that, since the doctor's office is in Sacramento, and I was in Buffalo. So would you please release information to me over the phone? Eventually, reluctantly, they did.
The brain tumor was starting to flare up from the gamma knife surgery. My entire right parietal lobe a was afloat in edema, and putting a week bit of pressure on my poor brains.
Extra strength tylenol is Gods Best Medicine, and thank goodness I really had brought the bathroom sink..or rather the medicine cabinet. I had a steroid with me, and started, under thier advice, taking it.
The headache did not go away.
It went away enough that S and I managed to get over the border and up to Guelph.
The headache went on for five days, and at one point I thought I might have to give up the trip, and fly back to Sacramento for treatment. Once I got up to the recommended dose of the steroid, the headaches decreased. I still got one before a thunderstorm, when I dove into the water, if I bent over, but it became manageable.
Sooo. We didn't know if this was flare up from the gamma kinfe, or new tumor growth. All indicators were that it was flare up, but without another MRI, no guarantees. And I couldn't have one for at least two months. So I didn't worry about it, and just treated the headache and the physical side effects of both the edema, and the steroid. Hello., clutziness, goodby sleep. And coherent thought.
Returning to Sac, all the things I hadn't been thinking about came crowding back in. What if it IS new tumor growth? BLECK. So the first thing on the list was another MRI. And these guys handed me the CD with the pics on it, so I got to see the thing before I talked to a doc about it.
No wonder my head hurt.
Yeterday I finally got to see the pictures from July, and yes, they were worse. The clumsiness and stumbling have decreased since then, and I can type a bit better, althought not as well as usual. Next week is a CT scan to see what the lymph nodes are up to. If they are just sitting around, I get to ignore them for a while longer. If they are enlarged, I will go back on paclit6axel NAB, as long as that keeps working. Them Gemzar, then probably Xyloda. I could repeat Adriamycin, but I'm not sure I want to reisk the other toxicities that are associated with it, the biggest one being heart damage.
All the other stuff is peripheral to treatment rather than cancer itself. K and I were far more worried about the MRI than the CT scan. Chemo seems pretty routine, but I'd far prefer NOT to have any new growies in my brain pan, thanks anyhow.
So I'll update as we know more. This is cancer as a chronic disease.
Tuesday, September 14, 2010
Thursday, September 09, 2010
Tuesday, June 08, 2010
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Saturday, June 05, 2010
you're never going to keep me down...
So my oncologist was encouraging. The short version is that he says most of it looks good. I go in to see him next Wednesday to determine the next steps.
The biopsies will determine if the cancer has spread to the next lymph nodes down the line. My suspicion is that the cancer is partly responding to the taxotere chemotherapy - thus the existing nodes got smaller, decreased uptake. BUT, it has also mutated, and new cells have become resistant to the current chemo. Thus, why the new lymph nodes are enlarged and showing faster glucose uptake. Clever little bastards. Life will break out, even when you sort of might kind of slightly prefer that it didn't.
How do I talk to my own genes and cells, and explain to them that I'd prefer if they didn't continue to multiply uncontrollably? The microbiology and genetics of cancer are fascinating, but I'd just as soon not be studying then from this close up. Poop. Too bad I can't fold myself inside out like a microscope, and really see what's going on.
From previous conversations with the oncologist, that probably means I take a break at this point, and start a new chemo regimen a little later in the summer or early fall. One possibility is an oral chemo called Gemzar. (Who in the Sam Hill comes up with these names?)
Needless to say, this is not the outcome I was hoping for. Still, there's lots of treatment options still available.
My poor body and spirit are feeling fairly beat up. I also find myself frustrated again that this body which I have truly always beaten to shit and still been able to depend upon, is more fragile than it looks from the outside. I think of myself as an amazon, but apparently years bashing it have taken their toll. When I had one of my knee surgeries, I asked the surgeon if he could install a zipper, since no doubt I'd be having surgery again sometime before too long. As I recall, he didn't think it was funny, and I got that LOOK. That doctor-ish I have no sense of humor look. After five years, my oncologist at least now knows when I'm joking.
I wonder what the original Amazons felt like when they started to age or got sick. Did they laugh, and continue to dash about in spite of creaky knees and sagging boob(s), or did they sail off into the sunset? I doubt they gave up, and retired to their rocking chairs to age gracefully. Became wise women. Made art. I'm not sure.
I don't ever want to be one of those sorts who won't go to party where someone has a cold because I'm such a "delicate little flower". Still, I'm feeling that there's a wee possibility I need to go a bit easier on myself, physically.
OTOH, I still want to learn to fly an ultra-light, and there are noises about motorcycles. Wonder which path I'll choose? I also need to train my replacement, in several ways.
So I hopefully have the summer to turn this ragbag chemo body back into some semblance of health. Hair! A digestive system! A mouth without sores! Fingernails! Cuts and scrapes that actually heal! What a concept!
As the Monty Python boys say, I'm NOT DEAD YET!
Wish me luck.
All my love,
Friday, June 04, 2010
Monday, May 31, 2010
We had a great group of friends show up on Saturday morning. They were all fabulous packers and helpers. Several said they might be able to come early Thursday, because of early release, but homework obviously takes precedence. We have all week, so if anyone wants to earn an hours' worth of extra $$$, they can drop by any afternoon, Tuesday-Thursday, to load up the second POD. The PODs are a brilliant moving and storage idea, and if we continue to be this mobile a society, I'm going to buy two. One as my permanent closet, and the other as my permanent art studio. Then we never have to pack or box the $%#^%$#^%& again.
Friday morning we shift gears, and I have to fast and head down for a PET scan. It's feeling pretty loaded - If I have to, I will roll with it, and get three more rounds of chemo. I just REALLY don't want the scan to find anything new. That would bum me out. If that happens, I take a break, and start a new type of chemo when I get back from my trip, yuck-o.
Still, the packing has gone amazingly smoothly, and we expect to be out on time, with a relatively clean house. Yesterday's volunteers repaired a couple of small dings where doors had banged on walls, and one towel rack that had been badly installed. And having a lot of stuff out of the house has given us more breathing room. It's sort of AIRY. Huge blessings on Sumati, without whose stellar organizing skills we would still be buried under frightening mounds of STUFF.
Love to all,
Saturday, May 15, 2010
My left ankle has been sore and swollen for about a week, off and on. Last week was rehearsals for Coppelia, so we were dancing on a hard, hard stage rather than our nice sprung studio dance floor.
Yesterday morning at chemo, I showed it to the chemo nurses. They had the same reaction I did, that I'd somehow re-injured an old ankle break, and needed to just stay off it. So I iced it all through chemotherapy.
Then yesterday afternoon I noticed it was even MORE swollen and sore than it had been the day before. Ok. Either there's a break or a sprain in there, or something weirder is going on.
I called the oncologist, and told them about it, they said go in immediately for an ultrasound, we have to rule out a DVT (deep veinal tnrombosis), the fancy name for a blood clot. They had no spaces in ultrasound, so they said go into the ER.
At about 2:30, on a Friday afternoon.
Well, the front wasn't very crowded, but man, the back was. Initially they put me into the last little curtained room, but then a bit later asked me politely if I minded being in the hallway. All 11 rooms were filled up, and they had two more ambulances coming in.
So the doctor's reaction was the same as mine = reinjured the ankle. BUT they still wanted an x-ray and an untrasound, just to be safe. If there was a clot, it could kill me, either by going and mucking up a lung, or in my case by causing a brain bleed. Not good.
In the mean time, I got quite the tragicomedy in the waiting room. The five other visitors I could see were respectively - Hysterical Mommy girl, who was alternately yelling for her mom, her husband, and a cell phone, and trying to run past the security guard. Where she thought she would go in nothing but a hospital gown is a bit of a mystery, but the nurses got so tired of it at one point they threatened to tie her down. Then we had Obese Diabetes lady, which infections along the backs of her lags (She refuses to lie down, so she has pressure on bad veins all the time), her son chewing her out, and then turns out SHE is caring at home for her demented mother, and didn't want to spend the night in the hospital to take care of a new systemic infection. Yick.
In the hallway with me was Hearing Voices girl, who apparently had been admitted for creating a "disturbance". The disturbance turned out to be that she had taken a dump on the floor of a restaurant in town. How lovely. Schizophrenic, I guessed, and that seemed to be the doc's guess as well. (I know, none of this is any of my business, but in an ER they don't worry about HIPPA violations by eavesdroppers like me.) While I was liying around waiting for my turn in ultrasound, the last guy was admitted, also a hall patient like me, for, get this, a rattlesnake bite. The classic way, too. He'd killed a little one, then picked it up to make sure it was dead. And of course it wasn't - struck him on the finger. He ALSO didn't want to be admitted, because his wife's parents were having their 50th wedding celebration the next day, and he'd still managed to clean toilets and bathtubs for it BEFORE a friend convinced him to go to the ER. It really does make red streaks up your arm. But I got to see the baby rattlesnake, in it's own personal ziplock. And it really does make red streaks up your arm.
So, like most of my medical adventures, I didn't "present" normally. The infusion nurses said there'd usually be swelling or a red area further up my leg. There wasn't. They said it would be very painful. Apparently my definition of very painful is a bit wonky these days. And yes, there is a partial occlusion deftly hidden behind my left knee.
So oh goody, on top of the other treatment, I get to have a shot of blood thinner every day for a month, and try to keep that little sucker from growing any more. Who knew? But I'm glad I went ahead and went in, and didn't just blow it off as a sore ankle.
I'm in good spirits, just trying to remember to prop it up and help it circulate whenever I'm sitting down (ha ha ha.) Anyone who has mad packing skills, and can get over in the next couple of weeks would be HUGELY appreciated.
Love to all,
Monday, May 03, 2010
Social Couture is offering Manolo for the Bride readers a chance to win a $50 gift certificate to that fabulous store. To enter, leave a comment on this post telling us which of Social Couture’s themes is your favorite.
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This giveaway will end at 11:59 p.m. EST on Sunday, May 9, and the winner – chosen via the trusty random number generator – will be announced the next day along with yet another awesome giveaway! Good luck!
Sunday, May 02, 2010
It was gorgeous day here in Davis. First really pretty summer day we've had - everyone in shorts, and a nice breeze. Tess and I went to our ballet class, although I didn't do the whole class - one of the nastier side effects of taxol drugs is that they make your joints ache, and that one has been hitting me pretty hard lately.
I came home, and Kevin and I had talked about going to the farmer's market, but I wanted to just sit and putter for a bit. So we had a cup of tea, and he went merrily off in his kilt, and I puttered. You know Kevin gets chatted up a lot just because of the accent; add a utilikilt in, and it takes him four hours to go to the co-op. Everyone from the teenagers to little old ladies want to have a gossip with him.
Meanwhile, I was canning asparagus. We'd had 5 pounds of leftovers from Fiddlers, and I was curious to try a recipe I ran across. I invented the pickling spice, and it smelled heavenly. It ended up being four quart jars, which doesn't look like much (I always want to at least fill the canner, so I require seven jar recipes) but I suspect once we open one it'll last a while. One of my dancer friends made me a bloody mary a while ago with some homemade tomato juice from last summer, and it was deee-lish, and that's how we got inspired to do the asparagus. You know that fresh tomato taste makes canning so worth it. One of the weirder spices I put into the pickling spice was cardomom, so there's a chance they will be awful. I've already made chutney and three kinds of marmalade this spring, so I'm not very sentimental about stuff I don't like. I dump it down the disposal.
Then Kevin came home. I went off to sit by the pool at Jenny's house for a bit, and he went to the theatre to see if the ballet crew needed help. Tessie's performances are next weekend, and we just moved into the theatre yesterday. Kevin has been needing some guy time, and a couple of the adults who dance with me are lots of fun, so I was enouraging him to go and paint and pound nails.
Tess and Chloe went off to a birthday party. Sixth grade is now apparently the age where they switch from all girl parties to mixed ones. This was a pool party, but from 5:30 until 10 pm, and the whole class was invited. There's apparently a 6th grade dance, and lots of rumors about who is going with whom.
Kevin and I had a cocktail with Jenny and David, and then wandered home. He and I had gotten gifts for each other, and they are pretty telling.
I have a new bike, a one speed, except for the fact that it's blue it could be the bike ridden by the wicked witch in Wizard of Oz. I love it. Davis is totally flat, so I don't need gears, and I can step across, so I can ride it wearing a skirt, and when I'm doing chemo I'd far rather ride upright. But I've been longing for baskets - one for the front, and one for the back, (to stuff Toto into, obviously). Kevin hunted around all six of our local bike shops, and found an actual detachable wicker one for the front, with a handle and everything. It's perfect, and I did the happy dance.
For Kevin, I found this great fanny pack, made by Kelty and full of bells and whistles. It is both a butt pack and it has a shoulder strap so he can carry it as a Man Bag. THEN it ALSO unfolds into a day pack, so you can take it travelling. Two water bottle pockets. He and I are constantly searching for the perfect travelling bag, big enough to stuff souvenirs into, but no so big as to be awkward. I'm usually overloaded, and he doesn't have quite enough room. But the combo cracked me up - very high tech, and very elegant low tech. (Although it has a snazzy plastic clip to attach it to the front of the bike.)
We ate Indian food, and then settled down to watch a silly movie. I made it about half an hour, and then realized what I really wanted to do was curl up with my book. So that is what we did. We actually went out the night before and ate a huge mound of Indian food, and that was our anniversary date. Tessie came along, because really Kevin married into a family, not just me.
So that was the anniversary. I'm still bald, or bald again, and I fall asleep at 8 pm. Another good piece of news is that I might not have to do 12 rounds of chemo. I've done six, and we can tell I'm responding because there's a lymph node above my clavicle that I can feel, and it's getting smaller. Presuming everything else is responding this well, we'll do a PET scan, and I might be able to take a break after 9. That would be GREAT, since the chemo is wreaking havoc with not just my joints and my vanity, but my poor digestive system. Haven't lost a lot of weight, but it's creeping down, and the side effects definitely increase over the course of chemo.
So that's our news. All my love.
Wednesday, April 21, 2010
Drive through desert.
Arrive casa del Fargus two days later.
Hang out in Taos for a few days. Drink all of Fargus' wine, and get blisters from guitar music.
Drive east to Rancho Jet-Poop.
Read all of Jet-Poop's comic books.
Drive east, Tennessee? Visit town, where I was born...
Visit czeano's parents in Sparta.
Chapel Hill, visit Don and Monty.
Alexandria, chez Good/Estrada residence.
Be terrified of large guns.
Eat custard with Liz of Del Ray custard shop fame. try to determine if I bounced a check 6 years ago.
Wine and dine the HONS.
Visit dr. doyle. Drink melomel and cider. Have pagan ritual.
Manhattan? New haus of infinite monkeys with jongleur and FAB.
Drink Serendipity scotch with The Custodian!
Endycott. Tiffanys. Also Aunt Dot and Uncle Daivid.
Toronto - wine and dine eh2, we owe them one.
ONTARIO. Anyone who doesn't mind mosquitoes in the north woods is welcome to visit, although I have to pick the time. DON'T come during the family reunion, it's a full house and then some.
Visit Maline and George in Leadville, Wisconsin.
grundy goes shopping with maline, wertperch does guy stuff with george.
Various and sundry Michigan noders, including some grand high [clampe|muckymucks] and mutants.
HOMEWARD, via Laramie.
Good luck with that.
Tuesday, March 02, 2010
Monday, March 01, 2010
Many bothans have died to bring you this information. ----that is all----
1) Alphabetize your CD collection. (2:30 am)
2) Paint your toe shoes with cobalt blue watercolors. (1:30 am)
3) Fold laundry load dishwasher forget what you were doing fold more laundry leave in pile on end of bed so it gets kicked and unfolded. Never put away.
4) Give wertperch all your credit cards and checkbook, so you do not spend money, because you are effectively hypomanic, and you need the money to close on the house.
5) Do not spend money. I tell you three times.
6) Start an ENORMOUS oil painting of yourself from the first cleavage calendar. Get scared of creepy stare-y blue-green eyeballs in self portrait.
7) DO NOT SPEND MORE MONEY.
8) Find Pogo books at comic book store, and ask wertperch to please please PLEASE let you buy them. Gloat to pogophile friend. Consider selling all Heinlein pulps on Ebay. Wish for a copy of grampa's comics, which would solve all the loan complications.
9) Read the paperwork for the house. Realize favorite clause is the warning that living in a development with a golf course on the north end (Yeah, are we yuppie, or what?) is the warning about ERRANT GOLF BALLS all caps, in bold. HOW DUMB WOULD YOU HAVE TO BE NOT TO KNOW THIS?
10) Drink heavily. Booze offsets the effects of the steroids. Ask doctor(s) if there's a problem with drinking gingerale and vodka, with candied ginger, starting at, oh, say, 10:30 in the morning. Docs say, for three weeks, if you are controlling the hypomania, then yes, just don't take benzos at the same time. Consider this as good advice. Celebrate by DRINKING. Thank you, Jethro Bodine. Toss me a PBR.
11) Sort more CDs. Fold clothes. Consider alphabetizing the books. Try to resist. Start cleaning up the backyard, find an old pot full of glorious orange Oregon dirt. Dye everything white in the house orange with Oregon iron oxide. Find that wertperch wants to kill you, even though you've dyed his boring white tee shirts. You talk too much.
12) Aphabetize the books, and start boxing up the ones you don't want. Anyone want any books? If you pay the shipping, I send to you.
13) Cook strange things at midnight. Have stomachache the next day. Drink all the booze in the house, which isn't much, except for wertperch's exotic beer stash.
14) Take hydrocodone on an empty stomach. Hurl. Eat cheerios. Hurl. Visit new house, and christen it by hurling in the master bath. Consider peeing on the corners, it would show about the same amount of class.
15) Try not to kill wertperch, or cause wertperch to kill you.
16) Try to resist the temptation to chase bad drivers down the street, and go generally postal. Go to the grocery store with cancer survivor across the street (GliomaGirl), using stroller to haul booze. Don't take babies. Realize that both of you have the attention span of a gnat, and cannot have anything remotely resembling a normal conversation. Have fun anyway. Notice the tellers looking extremely disturbed about the six large bottles of booze that you are putting where the baby's butt would be. Get the giggles. Talk loudly about cancer survival, complete with head wounds. Realize that we probably do not project the image of responsible moms. Make garbled fuckfuck noises. Drink, not so heavily, upon returning home.
17) Spend many, many minutes on phones with LARGE BUREAUCRACIES, medical, and bankinal, realestatinal.. Try to decide which to hate the most.
18) 3:00 am - surf furniture stores. Do not steal credit cards back from wertperch. Consider freezing cash card into a block of ice.
19) Look for cocktail dresses actually named after cocktails. DO NOT BUY THE COCKTAIL DRESSES. Realize menfolk of family have better taste, and furthermore look better in cocktail dresses than grundoon does, and have found cooler dresses. Wonder if menfolk are all really gay. Think it unlikely.
20) Shop for large caliber handguns and chainsaws.
21) Write really complicated emotional stuff, and decide NOT to post all of it. Lose battle. Post it anyway. Cry all day, and have nightmares. Take extra-strong sleeping medication, and still sleep for only four hours.
23) Search for cobalt blue suede boots and chaps for GammaGirl superheroine costume. Find them in England, on Ebay. DO NOT BUY THE CHAPS. Decide to wait until AFTER the house closes. Wear gammagirl wig and tiara to POOlates class.
23) Dance ballet class, on pointe, for 2-1/2 hours. Still get so wired that you consider going to the ER for help, after talking to all medical offices for more than 20 minutes, and still not getting answers. Try not to kill wertperch. Go out for a beer, drink mai tais, and find out it's salsa night at the Grad. Call the ballet dancer who might be available. Go and salsa for two more hours. Get happy. Dance with sweaty boys, and do the ballet/hiphop/salsa with Maia. Consider the merits running away to Morocco to become exotic dancers. Drink more mai tais. Find out that next day thighs will hurt, a LOT, and it's still worth it, because you haven't gone postal. Lather, rinse and repeat. Do not fold, spindle or mutilate.
Many bothans have died to bring you this information.
----that is all----
Thursday, February 25, 2010
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.
Monday, February 15, 2010
I used to think that falling in love, or being in love required a lot of time. That I should wait, and weigh, and consider, and perhaps make a list of someone's most wonderful (or most irritating) habits, before I committed myself, mentally, to believing that I love them.
I no longer believe that this is true.
I have men friends who claim they "fall in love with" the swish of a dress, sunlight on hair, the turn of an ankle perhaps. Altough I can't say that I experience this, I do find it easy to fall for someone. Perhaps one is visual, the other is mental. Molecular. I don't know.
In order to make sense of this for you, I have to work both backwards and forwards.
I am reading a book called Blithe Tomatoes. It's for my book club, which tends to be Books with Wine once a month. But oddly enough, the author is the husband of the woman who sells flowers at the Davis farmer's market, right next to the booth where wertperch and I sell vegetables.
This evening, I couldn't concentrate on the book, much as I like it. My mind is wandering.
Sunday afternoon, two lovely young men came to interview me, grundoon, and wertperch, about how we met, and the strange and wondrous internet site where that took place. We sat for almost four hours, trying not to look self-concious in front of QXZ's big camera, while Walter asked us questions. How we met, when we actually first met "in person", why we think everything2 became a social network without obviously meaning to, how we've met other noders, whether pigs have wings. It was fascinating, emotional, and very hard work.
And the interview did me a big favor, which was to remind me of a number of things and people that I love, and that interest me. What makes people drawn to each other. What creates the impulse to read some anonymous someone's work, until they don't seem so anonymous, and you start to want to know the person behind the writing. Why creating, and creativity, and a creative community, means so much to me.
So as I was reading (-ish; mostly daydreaming), I was thinking about how I missed Laurel, and wished for more people around me who enjoy the making of things, whether that be writing or drawing, cooking or origami, or the building huge concrete earthworks or statues of women.
And I wondered why I had managed to forget, for most of this fall, that I love the making of things, and the process of the making of things with other people.
Which, in my completely convoluted and roundabout daydreaming sort of way, brought me to Richard.
I met Richard at the Strawberry Music Festival. I had travelled down a day and half early, to try and find a slightly more pleasant campsite amongst the other three thousand Strawberry visitors than the one we had the previous year. I thought I had found a fairly pleasant spot, but not long after starting to set up tents, I got booted out of my spot. I'd slopped over a boundary sign.
This kind fellow from across the road said, come down here! I have more than enough space set aside.
I waffled for a bit, never being very good at accepting favors from a stranger, and then decided it was okay. I moved my campsite, taking up a fairly teeny space on the edge of his site, and then joined him and two of his friends for a short chat.
That chat ended up going on for something around six hours.
Richard is lovely. Interesting, funny, and interested. His two friends were the same. They were also experienced strawberry campers, and had a camp with easily 14 tents, two three burner stoves, a keg - a KEG, people - of beer, and numerous luxuries. And they shared me in without even a blink. Every so often, I would get self-concious about taking up their shade, drinking their booze, eating their food, etc, but they managed to not just seem oblivious to the unevenness of contribution, but to make me feel like one of the family.
And I fell in love.
They asked me questions; and really, carefully, listened to the answers. This is one of the few conversations I really remember where anyone really wanted to know, in detail, what this whole metastatic cancer trip is like, and took the time to listen with total care. We shared stories; every so often we'd be drawn away for music, but in hindsight this was by far my favorite part of the festival, this wonderful person, and the wonderful group of people he had drawn around him.
Now, I know, I know, I have to qualify this. I'll try to separate, clearly, the difference between falling in love like this, and the impulse to possess someone. It's very clear to me that I love people, of many genders, and far too many of them to have any concept of possessing, (or shagging) even a few. This is much more about that feeling that this person is someone I want to keep, to continue to know. It's mostly about that internal recognition that I don't actually need to know this person's bad habits, dreams, values; that I can just love them, like that, without trying, and without expecting or demanding anything.
As soon as wertperch and the others arrived, I told him, I've fallen madly in love with our neighbor, I can't wait for you to meet him. At this point, the crowd was much larger, but they also hit it off, just as I expected.
We traded contact info, and promises to keep in touch.
Fast foward to the rest of the fall. The downside of having people tell you how brave you are facing cancer, and how well you are handling it, is that when you aren't brave, and aren't handling it well, it's harder to admit. This fall I was feeling very angry, extremely sorry for myself, and pitiful. And I could hardly stand to be in the room with me. With that said, not enjoying my own emotional state, I couldn't imagine that anyone else could possibly want to be in the same room as me. Depression and self-pity are two of my least favorite states, and I would like to pretend I never experience them. It's a lie.
And I haven't stayed in touch with Richard, because since I couldn't stand myself, why on earth would he be interested in talking with me? What a useless friend I must be.
But I've slowly been climbing out of that pit. Slowly, sloggingly, covered with mud, but climbing out none the less.
One of the other subjects that came up during the noder love interview, was why I thought that everything2, as a community, became such. What is it about these people that keeps me coming back, that keeps me in touch, as no other electronic "place" does?
And I talked about Laurel, and that feeling of love, that here was a person I could value, before I'd ever met her.
This post seems to have no conclusion. It was a strange thread of ideas that I was trying to get down, I may try to break it down into smaller bits as I think on it. More soon.