Friday, October 22, 2010

Response to another mom, debating whether or not to continue chemotherapy

Tough one. I'm going to tell you what I do, but not make a recommendation.

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

My titanium colander is bigger than your titanium colander

So I went to the ER day before yesterday, with a nasty, nasty headache.

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

Tell me of the nature of death

What do you say to a twelve year old who asks you what REALLY happens when you die?

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

This is all the good news I need, today.

Dearly beloved,


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

So this bald girl walked into a bar

October 8, 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


We're here, but you have to hunt for us...

Tuesday, October 05, 2010

Fortunately, unfortunately

"NO evidence of progression of recurrent or metastatic disease".

Fortunately, unfortunately.

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

Sometimes it leaks through the cracks

Dearly beloved,

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

State of the Evidence

Dearly beloved,

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.