Tuesday, September 20, 2016


I expect(ed) nothing.
I live(d) frugally in surprise.

And I found out today that I am NED! No Evidence of Disease! There are a couple of expressions in my support group for scan reports. One is "dancing with NED," and the other is "dating the STABLE boy." I like to say NRED: no radiologic evidence of disease. But today I say I'm dancing with Fred. NFRED! NO FUCKING RADIOLOGIC EVIDENCE OF DISEASE! Anywhere!

Didn't think I was ever going to catch a break!

Monday, September 19, 2016

Expect Nothing

I've been thinking about this Alice Walker poem all day, one of my favorites. I will find out tomorrow how I'm doing regarding the presence of cancer in my body and/or brain. I feel good, but assume nothing. Actually, that's a lie. This time around I'm just assuming there is bad news, which is what I'm getting used to. I have no idea what the plan would be if it is and TDM-1 is a bust for me. I try to stay in reality - so sure, I hope for the best, but I don't want to be surprised if it's the worst. I think if I could get to the neutral, having no expectations at all, then there wouldn't be a surfeit of disappointment and a good surprise would be really good. Alice Walker says this much better than I do.

Expect Nothing, by Alice Walker

Expect nothing. Live frugally
On surprise.
Become a stranger
To need of pity
Or, if compassion be freely
Given out
Take only enough
Stop short of urge to plead
Then purge away the need.

Wish for nothing larger
Than your own small heart
Or greater than a star;
Tame wild disappointment
With caress unmoved and cold
Make of it a parka
For your soul.

Discover the reason why
So tiny human midget
Exists at all
So scared unwise
But expect nothing. Live frugally
On surprise.

Friday, August 19, 2016


Hey Paula, thanks for encouraging me to write and hinting that no blog posts can be worrisome!

Inertia has set in. Three infusions into a new chemo, I can't really judge what the chronic side effects are. After the last infusion, I know that fatigue - crushing fatigue that does not dissipate with sleep or rest - may be an ongoing issue. Some days I think I need a little part time job to give some structure to my days, some days I nap and then sleep twelve more hours that night. It's hard to think about working on those days. Plus, the last two times I attempted to work for a living cancer shit storms unfolded and I had to back off. So, these have made me a little superstitious about trying again, and I'm not a superstitious person in general.

I don't have small children to care for, and as much I try to insinuate myself into my 18- and 20-year-olds' lives, they are not buying into it. So being an at-home-mom isn't really taking up my days this summer. The work of making the cancer yoga class happen is pretty well done. It's happening and it is primarily in the hands of the nurse supervisor and my yoga teacher. This is good, really good, but that project seems done and mostly out of my hands (aside from attending and participating, of course). I have an editorial to write for the end of September to bring a little of my jarring brand of reality to the dreaded Breast Cancer Awareness Month. There's always cooking and cleaning to do, and there's plenty of that; but come on, that doesn't complete one's need to be useful and productive as we women are well aware of. I have lots of free time to go and visit long distance friends in the northwest, but, well, I don't drive long distances myself any more, as my brain has melted enough to make my vision bad and my concentration worse.

You get the picture.

Complain, complain, whine, whine... But this is my reality and soon my friends who are teachers will go back to work, and my core peeps with whom I have a sweet little social life will go away, at least on the weekdays which is when I'm generally on my own. So... if y'all have any great ideas for a little getting-out-of-the-house cash flow... I'm ready to hear them!

Anyhow, my cancer status (the original purpose of starting this blog) is, drumroll.... UNKNOWN! I'm in that third of the three months between scans (CT for the body, MRI for the brain) that is sort of a no man's land. The initial post-scan crisis and what we do about it is done - drugs switched, another fun gamma knife, etc. - and there's only the dread anticipation of what's coming and the thready hope that the news will actually be good or even tolerable. In a lot less words (not my forte) - SCANXIETY. A break from the brain tumors would be nice, even if it's only the relief of a couple of months hiatus from thinking about it. The CT will also give us an update on the lung lesion that had grown between scans last time.

That's really all I know right now. There aren't any dramatic symptoms telling me anything but I've learned that shit can happen without symptoms. If this post seems depressing at all please know it is actually not. I'm mostly content; I'm in relatively good health; my body feels good, if not my brain; and I know that in some ways I'm very lucky.

Maybe the above is enough. In our culture of movers, shakers, and strivers, maybe what my life is whittled down to is enough. Maybe I actually have everything I need and as much as I or any of us should want. Maybe, to steal lyrics from Blind Pilot, it's just this.

Let all things be as they should
Let my heart just drift like wood
And will I break or will I bow
if I cannot let it go?

Feel that sun just hold you right
leave you burning in the night
Feel that wind lap up your soul
if you cannot let it go
If I cannot let it go.

Wednesday, August 10, 2016



Monday, June 20, 2016

No title

I am here but sometimes I watch as though I'm not, and think what that will be like.

I don't have a bucket list. There's nowhere I'd rather be and nothing I'd rather do than be here, with my people. I am in no way the parachuting-out-of-an-airplane type.

No one knows when they will die, but the visceral experience of my every day in this realm is both a powerful motivator to find contentment and a fucking fear fest.

This was meant to be a poem, but it's not. I had a few lines yesterday in the sleepy mind before being really awake but I didn't sit up and write them down. So here are some sentences.

Yoga makes me a better person. Actually if everyone practiced yoga everyone would be a better person, in whatever way the phrase "better person" has meaning for each of us.

Coloring in a coloring book and knitting hats is not what I pictured I'd be doing in my fifties, but I am, and truthfully I love doing both. Except the part about the cracks in my fingers.

This is NOT meant to be one of those cute social media "25 things." I would never put you through that.

Friday, June 17, 2016

And six months later...

1. Unremarkable
    29 May 2016

If you're me or my metster friends, unremarkable is a miraculous word. If a scan report says an organ is unrmarkable it's very, very, very good news.

Today is the two-year anniversary of my metastatic recurrence diagnosis. This puts me at the start of  the median survival time for MBC of two to three years. I'm not sure how to think about this anniversary. I'm happy, because as I expressed on the radio the other day (see prior post for link), twice in the last two years I was sure I'd be dead in the next couple of months. That hasn't happened and for that I'm incredibly grateful - for plain old dumb luck, for my amazing medical, surgical, and radiation oncologists, for my husband, kids, family, and my family of friends, for my yoga teacher who has become my friend.

Let me explain the luck part. My radiation worked to clear my brain of lesions, and my drugs seem to keeping keeping all of my organs clear of lesions as well. This is not always the case for everyone. As many of you know, my biggest cancer pet peeve and research fantasy is the randomness of response to treatment. Some of us do well on what I've had, and some of our cancers don't respond to the same treatments, or in some cases get worse. My poor oncologist is left to start me on a treatment and as he explains every time, response all depends on the biology of my particular cancer, my singular, individual biology. Arrrgghhh. To me this is the frustration of all of us. We start a treatment and unlike getting lab results in a couple of days, we wait months for enough time to pass to be able to see changes on our imaging.

As to the title of this post:

"When a radiologist describes an imaging study as 'unremarkable' or a finding in an imaging study as 'unremarkable'the radiologist is saying that the study or finding is either 'normal' or has abnormalities that are of no significance to the patient in that situation."

2. Shit hits the fan... again. 
17 June 2016

Not so fast. Just a mere six weeks or so after a clear brain MRI I felt some vertigo and asked to have this scan a month early. Local MRI showed four new brain lesions which we arranged to have gamma knifed. Gamma knife is about the worst procedure I've had. Like something out of an old Star Trek a metal frame is attached to the head with four screws (bolts, nails, railroad spikes?). Two are placed on either side of the forehead and two in the back of the head. Local anesthesia tries but never quite gets there. Then a much more detailed MRI in the frame, where the image slices are much thinner so that sites unseen on regular MRI become visible, to look for more hidden lesions. Then the waiting game, in the frame of course, while the radiation oncologist, neurosurgeon, and medical physicist plan the treatment off of the MRI. 

This time, I was going in for four lesions, which take about 20 minutes each to zap. I was looking at about an hour twenty on the table. Do you think this fucking cancer cares about my plans? My tired daughter/chauffeur waiting for me? My peace of mind? Anything about me but killing me? Not so much. Turns out I spent five hours on that table having 22 lesions gamma knifed. One bathroom break added in. All in all, about seven hours wearing the Star Trek frame. I think I might have set some sort of record, but I have no idea. The cowboys at the rads clinic must have concluded that since I can't have whole brain radiation again that they would just go for it. I picture Dr. Kee, Dr. Adler, and the physicist whose name escapes me engaging in a huddle, coming out, doing a big chest bump, and hiking the ball. They were rock stars, as were the nurses and even an aromatherapy lady spritzing me with lavender and telling me to breathe as they bolted the frame on. I was loopy (Ativan and Oxycodone), most of the time but I sensed that there was always some combination of this group around me, making sure I was doing OK. I wasn't (who would?), but as we like to say at my house, it was "good enough for who it's for."

Anyway, Thai food for Ani and me was the reward then my calm, competent, awesome heroic daughter drove me home. I had a headache on the way home and through bedtime but as with my first gamma knife I felt fine the next day. You'd think I'd be quite the mess but the up side to this treatment is such minimal after effects.

3. Rough Spring

The end of high school for my youngest was rough, as it is for a lot of seniors. He made it though so in the midst of the brain mets debacle was graduation week, family from out of town, awards night, parties, the graduation itself. I got my original mets diagnosis a couple of weeks before my daughter graduated, and had started chemo by her graduation date. June of 2015, no graduations but 18 brain tumors and whole brain radiation. My poor hubs absolutely DREADS this time of year now. I do too. Oh yeah! Let's add in a knee surgery for Jon a couple of weeks before graduation. Our friends were there for us, as they always are, cleaning, mowing the lawn, cooking, getting ready for a party we were having a little trouble getting ready for ourselves. My gratitude and love for this group of chosen family knows no bounds. 

4. Liminal

Our little family seems to muddle through, though sometimes I feel like the comic book drawing with just one person under a raining cloud and everyone else in the sunshine. That's my place in between. I just finished a lovely graphic memoir of living with MBC by Toronto artist Teva Harrison. It's called "In-Between Days." She writes, "I occupy the liminal spaces, slipping between unnoticed. It's like living in the shadows." I'm terminal, but surprisingly not dead yet. It's a strange place to be. I love my friends, and it's awkward to say these honest things for fear of making people sad or too careful about what they say around me. I know (I hope) that my people know there is nothing they should change or squelch on my behalf. Most of me loves basking in the stuff of life (much of it hilarious) that I'm sure to hear at ladies' night tonight. But I find myself feeling confused by the conversations going on around me, especially when they reference the future. I get confused anyway, with all the brain shit going on, but I'm filled with a sad clarity when I have no idea how to participate in conversations about next year, or hair turning gray, or getting older - the things that people talk about in the concrete spaces where I don't live any more.

5. Trials

If you want to get a headache start looking for a clinical trial. The system is extremely difficult for patients. The trials I see are ones that exclude me, either for the autoimmune disease I have or for the cancer drugs I've already taken. It's just part of the shit show. Hopefully when I see Dr. Raish we can hone in on something that can control my brain a little better. I'm looking at the drug neratinib, and hoping to get it through expanded access, as my pretreatment with capecitabine excludes me from the phase III trial. 

That's about it and not nearly it after five months of not writing. I hope I can focus and write more regularly, starting with reporting back the news of next week. For this moment, happy to have both my children at home with us, happy to get dressed and go to yoga class, happy my husband is so awesome, happy to be alive.

Thursday, May 26, 2016

Radio Interview


Well, it's been almost six months since I wrote here. I am musing about a post in my head but not ready to write yet. For now, a link if you feel like listening. It's about 20 minutes. ❤️❤️

Wednesday, January 20, 2016

Crap After Crap and a Good Life in Between

This seems to be the nature of living with metastatic disease. We get a little break between scans (sometimes), then we deal with the crap the scans reveal. In between times are good. For me I mostly feel really good. So that’s lucky.  

I had gamma knife surgery yesterday to zap four small lesions in my brain. I won’t know until scans in three months reveal how well it worked, though it is thought to be a very effective treatment. Regardless, for the next three months I can sort of ignore it all, unless actual symptoms reveal a problem. I haven’t even had symptoms yet, of any of the cancer, aside from the original early stage lump and the little lump in my neck that foretold a metastatic recurrence. I like the ignoring part. Nothing about my life will improve if I think about it all the time, so I choose not to. 

So, to the gamma knife. Doctors do NOT like administering whole brain radiation more than once, so I have basically used up that option. Not that I want more, as the cognitive impairments have been becoming more apparent as time goes on. I like my brain! I hate to see it being fucked with, but choices aside from the WBR were basically nil at the time.  Fortunately the lesions found in my MRI were gamma knife-able.  

Basically gamma knife is targeted radiation to only the lesions so as not to damage healthy brain tissue. It involves having a frame
essentially bolted to the head: two screws(?), nails (?) – I don’t know what they were really. The worst part by far was the ginormous syringes full of Novacaine they shot in at each site before they made holes in my head. There were two sites on my forehead and two more on the lower back of my head. Through most of the last three years I have sucked it up and taken what has been thrown at me. Those motherfucking shots hurt so damn much I blubbered and cried behind the frame.  Even with the pre-meds of Ativan and Oxycodone, even with the numbing cream, even with my pretty high pain tolerance.

This all occurred after yet another MRI, this one having images (slices) every millimeter rather than the norm of every five millimeters.  Here’s where they found the pesky fourth lesion to zap, a nice bonus of one that won’t have grown for three months while I wait for more scans.

Then… Believe it or not, I sat in a room with my head bolted to a frame while the radiation oncologist, the neurosurgeon, and the medical physicist planned the treatment based on the fresh MRI. Turned out there was a complicated case before me so the wait was who-knows-how-long.  I was wearing scrub pants that must have been a size XXXXL and a gown tied in the back which of course kept untying, as they always do.

At left is the space helmet-y thing they put on me so the medical physicist could somehow measure whatever it was he needed to measure. Each lesion took about 20 minutes to zap so about an hour and twenty for the procedure in a fairly uncomfortable position. I didn’t really feel anything, which goes for radiation procedures while they’re happening. I was then wheeled back to whatever room my head got poked to take the frame off. And that was that. Jon and I left and drove the two hours home. After sleeping until noon today, I felt pretty normal, practiced yoga, tested my balance during said practice and it was pretty ok. 

So… None of this seems very pink to me. My friends with MBC and I tolerate gazillions of procedures that seem like science fiction to
prolong our lives.  I and many of these women blog, post pictures, tweet, yell at politicians (Rand Paul sucks by the way) and former Komen CEO Nancy Brinker, because we all know we have been mostly forsaken in the breast cancer conversation of the last few decades.  With the founding of METUP and the Metastatic Breast Cancer Project things just may be looking up for us. Hopefully Joe Biden adds to the positives by allocating and reallocating big dollars for mets research.  After all, it is the metastatic cancer that actually kills. No one ever died from a tumor in her/his breast.  

I am SO looking forward to attending my second Living Beyond Breast Cancer Conference for Metastatic Breast Cancer Patients in April. I long to spend in-person time with the friends I made there last year, who have continued to be my online sisters in the interim. I don’t know what I would do without them. To be able to say whatever you want about this shit to people who understand completely and deeply is precious. To have and to give empathy as opposed to sympathy is also precious. And to be able to make jokes about all this is also precious. 

So we will continue to live our precious lives and make the most of the time doing what we love, cultivating our favorite relationships, and of course watching the Pats win the Superbowl.  Though if I’m realistic it’s going to go the Panthers way.

And just for kicks, Louie thinking he's waiting for dinner. More kicks: fresh tattoo! It is the second half a Lucille Clifton poem, Blessing the Boats.

may you open your eyes to water
water waving forever
and may you in your innocence
sail through this to that