As a Jewish person (by choice, by conversion, the hard way, over a year, in NYC) I feel connected to the white haired, angry yet helpful G-d of the Old Testament.
As a person who was raised in the Presbyterian church, I do also love me some Jesus. (And a good old-fashioned Protestant hymn.)
As a dyed in the wool, former- Dead-following, ecstatic dancing, sage burning hippie, I feel connected to the earth and the stars and the turning of the wheel. I believe in magic and fairies and elemental forces.
I know to some people, these things are mutually exclusive, but this is just my way. I know there is something bigger than us.
And while I might not always know what to call it, I do talk to it every day.
In times of trouble or doubt, I ask for direction and most importantly, I ask for my answers to be delivered in ways that I can easily understand. Then I go and do mountains of research and tap every human resource possible; all the while looking and watching and listening for signs.
And I always get them.
Taking time off chemo to undergo that pesky brain radiation had the expected result. My disease has advanced. Again, I landed in the hospital and now I am two steps back. On oxygen again, weak, behind the eight ball. Now the question I faced was this: would my current treatment still be effective, or had the time off given the cancer an edge? If so, what would my next treatment be and would it even work? I had just sent off a fresh biopsy to Paradigm for analysis and the results were disappointing. The sample taken was too small, there was nothing to report.
That left me in a tricky spot. Should I just go for the next thing and hope for the best? This would mean I could never go back to my old treatment regimen and would never know if I could have gotten more mileage from it. On the other hand, I could give my old protocol another week to see if it would finally kick back into gear— but in doing so, would risk further advancement of my disease in the case it was really tapped out.
So, I asked. “Help me out here. Show me in ways I can understand.”
When I woke up, this was the first thing in my inbox:
Okay. I guess I can see how a decision making app created to help a person select a vacation destination or a new expensive camera might also aid a chick in pursuing various chemo options. I download the thing, run the numbers and sticking with the current treatment comes out ahead. Barely.
I send an email to my favorite witch, Paige Zaferiou. I ask her to throw some cards on my behalf. Here, in part, is what she reports:
The short-term outcome of staying the course is the Daughter of Swords. This indicates a potential need for study, schooling, learning of some kind. . . This card can also indicate that a message is coming to you, and it will contain important information you do not yet possess . . . Finally, the card I pulled to determine whether you should truly stay the course is the 10 of Cups. That is the card of YES, of happiness, and wishes come true. . .
Okay. If I’m smelling what she’s stepping in, I keep going with the old stuff, but keep an eye out for some new info. Mmm hmmm . . .
Lastly, I hit up my favorite random bible quote generator and here’s what it kicks out:
Old Testament, natch. I see you, YHVH. (But also, Christians sometimes refer to the Book of Isaiah as “The Fifth Gospel”, so I see you, too, Jesus!) I take this one to mean I should listen to my gut. Which I do. I tell my oncologist I want to give the old stuff one more chance. Just to be sure.
Fast forward to yesterday’s chemo.
I am focused, determined to make the most of this. I go alone and I don’t even read. I rest quietly, imagining the great General Patton standing in front of an ginormous American flag, like the opening scene of the movie “Patton.”
Just like in the movie, he yells,
“I don’t want any messages saying ‘I’m holding my position.’ We’re not holding a goddamned thing. We’re advancing constantly and we’re not interested in holding anything except the enemy’s balls. We’re going to hold him by his balls and we’re going to kick him in the ass; twist his balls and kick the living shit out of him all the time. Our plan of operation is to advance and keep on advancing. We’re going to go through the enemy like shit through a tinhorn.”
I don’t know what a tinhorn is, but in my mind I see a tiny Patton step off the edge of the stage and into my IV tube. As he gets sucked in, another mini general takes his place and does the same. They march into my bloodstream. Kicking cancer’s ass.
Wait. Something is wrong. The back of my head is on fire? I sit up, confused. Itchy. A nurse walks past my door, looks my way, does a double-take, reels back in. I look at my arm, hand, see my veins bulging like snakes. Suddenly, there are six nurses in my room. There is a great deal of rushing around. Someone squirts a huge dose of Benadryl into my line after the generals. I fall over sideways, like a bear shot with a tranquilizer dart. “You could have warned me” I say.
What I didn’t know, is that on or around the sixth dose of Paclitaxel, some patients suddenly display an allergic reaction. For those that do, this signals the end of this course of treatment.
Aha! The missing information!
Nope. There’s something else. Today, from my oncologist:
We looked back at the genomic analysis from early 2014 and it highlighted that TOPO2A is expressed in the cancer cells, which could mean that this is one of the drivers of the cancer. Inhibition of this enzyme could therefore be an effective strategy. Liposomal doxorubicin would be the best drug with which to pursue this.
Now THAT is what I call news I can use. I start my new treatment next Thursday. I am happy I did what I did. I may have lost another week but I know now, with certainty that the treatment had done all it could. I never have to say, “I wonder if . . .”
I am confident the new stuff will do some good for a good long time.
I am grateful to whatever force it is that guides us if only we ask. And listen. And if you haven’t seen it, “Patton” is a really good movie.
I can’t lie, bouncing back from the radiation has been way tougher than I thought it would be. I’m not good at sitting still and resting, which makes everything worse. Even when things are best case scenario, cancer has a way of stealing away just a teeny bit of your life at a time. So slow and insidious, you might not even notice. Things go sideways for a bit, then you think everything is back to normal. But when you actually take stock and look closely, you suddenly see that your hobbies have dropped away, and all your outings are doctor visits, and your laugh:cry ratio is all wrong . . .
One of the members of my palliative team at Mayo is a chaplain. She is awesome. I connected with her right off the bat—so much that she officiated at our wedding. I met with her a couple of months ago and I don’t remember the specifics of what was discussed, but she said something which has literally been echoing through my head for weeks. Now, mind you, she’s from Mexico so she speaks with a heavy Spanish accent. This is how it sounds in my brain:
“Make peace with waaaat is caaaming.”
Make peace with what is coming. Okay. Which part? Death? More and different chemo? Getting uglier? The baby? Being able to do less and less? Why? What if I don’t?
Sometimes I think about all the famous, beloved people who have been stolen from us way too early because of stupid cancer. The one that really gets me furious and riled up is Adam Yauch, from the Beastie Boys. I mean, come on. It’s just astounding to me that we live in a world where a BEASTIE BOY can die from cancer. That is just so wrong.
It does seem like the direction we’re heading with all the incredible advancements in nanotech and genomic stuff, pretty soon death won’t be about a tall skeleton man taking your hand in a hospital bed, but more of an ‘opting out’. Sort of like unsubscribing from an email list.
Just think how nice that might be. You could just get old as dirt and do pretty much everything you ever wanted to do. One day you would just say, “Yep, I think I’m ready to find out what comes after this.” You could finish off all your work and creations and say goodbye and just peacefully float away.
Or you could say, “Eff that ess! I love it here and I’m not leaving.”
That’s what I would do.
What I thought being bald would look like:
What I actually look like as a bald person:
Whole brain radiation does not evenly cook one’s scalp. My hair fell out in a manner that I now know is classified as a “Six” on the Norwood Hair Loss Scale. I also wasn’t prepared for how surprisingly physically painful the process would be. My best friend came over and went at me with Fireboy’s clippers and that helped a little bit, but all in all it was a three-day ordeal which culminated with me sitting in the bathtub with a trash can pulling my hair out in clumps. When I climbed out I had a fight with myself whether or not to look in the mirror. In the end I went for it—I mean, I’m going to have to look at some point, right? I was met with what I can only describe as a monk with mange.
I was fully prepared to weep at the loss of my feminine locks. Like Sinead O’Connor in the “Nothing Compares 2 U” video, I would bravely wipe my tears and embrace my new bald self like the badass cancer warrior chick I am. Right.
Turns out my bald self is a little more monk-y than spunk-y.
Of course, this led to some research on the practice of tonsure, the weird bald-on-the-top look which I’d seen in various forms of art in history classes, which I learned was mostly the practice of ancient Catholic Monks. Those guys undertook it as a physical representation of their renunciation of worldly goods, but it also exists in Buddhist, Hindu and maybe even Celtic traditions. So, in typical fashion, I didn’t get what I expected, but I learned something new.
Another side effect of the radiation is an actual physical burn which makes my forehead look like a Boy Scout’s first attempt at a campfire hot dog. That, combined with my funky monk ‘do makes for quite a look, let me assure you. So I slapped on a wig (which I got at Dion’s Le Wig Shoppe in Scottsdale) and added a hat and—lo and behold. I basically look like my normal old self.
I’m going to keep my number 6 Norwood. If nothing else, I figure it’ll give me an edge on my bangs. Fireboy invented a contraption to replace the Penguin Cold Caps, so I’ll start using that next week and let the hair farming commence. I’ll be posting some info on that in case anyone else wants to do a lil DIY follicle freezing. I picked up a recommendation on some hair and scalp rejuvenating product to try from our PA, (who is also a stylist) and I’ll review here soon, too.
I applaud all you glam baldsters out there, it just wasn’t in the cards for me.
In Latin, summa ope means “whatever it takes.” I decided yesterday that’s my new motto. Bottom line. When I roll those words around in my mind, I feel a steely resolve assemble inside me like scaffolding. On the outside I may look a bit worse for wear, but deep down, I feel like a seven-foot tall Viking swinging a bloody axe.
Two weeks ago I was driving along in my car and the phone rang. I stopped at a red light and watched a gang of overweight, red-faced tourists pedal past my bumper on rental bikes. I pushed a button on the steering wheel and a voice floated out of my speakers. It said, “There is cancer in your brain.”
I hung a left and headed for home. Strangely enough, this news didn’t come as a complete shock. I’d been picking up weird signals—I actually kind of expected to hear something along these lines, though I can’t explain how. I guess if you are really able to tune into your body, it finds a way to let you know. However it happened, I’m grateful.
I met with a radiation oncologist a few days later. He said 10 treatments should do it. I was only a tiny bit terrified because they told me I couldn’t have both radiation and chemo at the same time. I need my chemo. I mean, the last time I went off it for a week, the wheels fell off and I landed in the hospital.
So, I decided I’d have a long talk with my cells. They’re inside me, they should do what I tell them to. I figured it was worth a try. I said, “Cells. Listen up. You bad ones especially. Now I’m going to need you to chill out for a bit. JUST CHILL. Give me two weeks, you jerks. I mean it!” I was very firm. And I meant what I said.
Yesterday was my last treatment. My best friend came along. She handed me a brain-shaped piece of coral. I squeezed it during my last zap and then we went out for Slurpees. (For the brain freeze, get it?) My doctor is optimistic. He said the success rate for stuff like this is around 60% and anyway the radiation must be working on some level or I would be experiencing new neurological symptoms. The best part of the story is that despite all my best efforts with the Penguin Cold Cap system, I’m going to lose my hair after all. Ha! Good one, universe!
Moving forward I’ll get scans every three months and I’ll be on an Alzheimer’s drug called Namenda for six – it’s been shown to protect against memory loss in patients who have undergone whole brain radiation. The only side effect of all these brain zaps is that human voices and music have taken on a mechanical, robotic tone. It’s like Daft Punk up in here all the time. I don’t really mind it. It adds a bit of interest to the boring stories people tell. All in all, it wasn’t so bad. It seems my cells actually behaved themselves and it was kind of nice to experience something with a beginning, a middle and an end for a change. If I’m lucky, this stage IV stuff will go on and on and on and on . . .
Like I said, Summa ope. Whatever it takes.
Of all the cancer treatments I’ve been on, my least favorite was Affinitor. Why? Because they told me not to take baths! (It makes the skin on your feet peel off.) They also told me, “not to clap my hands” (?!) but I didn’t give a crap about that rule, because I am not addicted to generating applause.
I am, however, addicted to long, hot baths.
Baths have now replaced all my former vices— and I had plenty, let me tell you. Like any good gateway drug, it now takes more than some cut-rate epsom salts to get me off. (Plus, so much of that store-bought product comes with extra chemicals.) So, half out of necessity, half out of curiosity, I’ve become a bit of a mad scientist. Bathtub gin, bathtub meth— pfft, let’s make some REAL bathtub drugs! Who’s getting in with me?
Kava/Damiana Soak for Magicks and Happy Thoughts
(I order my herbs and muslin bags from Mountain Rose Herbs, they’re organic, and fairly priced.)
I must preface this one by saying I am a bit of a hippie. This bath smells like Stevie Nicks’ dirty laundry and the water you soak in will be a sludgy brown color. (It won’t stain your skin or tub though.) If you can get past those two hurdles— embrace them, even—in my experience, this bath is pretty doggone rewarding.
Mix 1 cup kava and 1/2 cup of damiana in a pot and fill with water. Bring up to a boil and then simmer over medium low heat for 20 minutes. Strain the herbs into a muslin bag and tie. Give it a squeeze and toss into the tub along with the “broth” you just made. Light some candles. Get in and float away . . . see what happens next.
This is the place I live. Some mornings, I wake up and for just one delicious second or two, I forget. Then it comes washing back over me and afterwards, all the day long, I drag a heavy backpack full of thoughts about where I am around with me—everywhere I go. As a permanent resident, I have to. There are many things that need to be done in order to ensure my continued stay. Most of them aren’t pleasant, but for me, leaving seems way worse than sticking around.
Some people live here alongside me, just as I do—as permanent residents; some people are just stopping through and everyone else are in this place, but not of it. I don’t know too many locals like myself. Probably busy with their backpacks, like I am. The people who are just visiting can be found everywhere—on the covers of checkout line magazines, especially. (Seems like a large number of them are reality show stars, doesn’t it?) The ones who are visiting just love to tell people about their journey here. They talk a lot about bravery and re-ordered priorities. I know their stay in this place is no fun —however short it may be—but they get to leave and never come back and that is something special. Let me tell you.
Then there’s the rest. They’re here around us visitors and lifers but they’re neither. They imagine they might understand what it’s like here, because they all know someone who has stopped by or lived or died where I live so they think they know something, but they don’t, really.
The longer I live here, I find these people harder and harder to understand—as if a slow-growing language barrier has developed. Sort of like my neighborhood is showing the first signs of gentrification. There’s all these cool people around and someone opened a rad cheese shop and it’s exciting until the realization comes that the cheese is out of the budget and there’s nothing in common with any of these people around who are wealthy beyond measure in ways I am not. More and more frequently I am finding myself resenting them for their carefree lifestyles and want to scream, “GTFO away from me unless you’d like to pick up this heavy-ass back pack for a while.” Unfortunately, because of that language barrier I mentioned before, what they hear me say is, “Tell me about that interesting show/book/article you watched/read about my town and how an obscure scientist is making huge strides in developing a Nairobian bean paste which when injected daily, might one day in the distant future make this place an abandoned ghost town full of tumbleweeds.” and they smile with relief and shove another hefty item into my bulging backpack so they are hands-free to go about eating the expensive, delicious cheese that is just out of my reach.
I imagine myself sitting on a bench on the dusty road that runs through this place. My permanent residence. A bus rolls up and belches out a new batch to wander the town. They all disembark with game faces on. Some look tough, resolved. Some laugh, some cry. Who will stay, who will go? Why them and not others? How do I keep my heart and communication lines open? How do I make the most of my life here as permanent resident? How do I let go of this ridiculously heavy backpack? Can I please taste some of that cheese?
When I tell people that I’m adopted, often they’ll say, “Oh, did you ever think of finding out who your ‘real’ parents are?” My mom and dad told me that I was adopted when I was really young. I don’t remember the exact words that they used, but they must have framed it in such a way that the news gave me the impression that while they weren’t directly responsible for my genetic material, they WERE the people who were supposed to raise me. I still feel that the people I called mom & dad are the parents I was supposed to have, and I’m not curious about my supposed other “real” parents; but I do feel just a slight bit of worry that they’re gypsies, or circus people and they might be missing teeth and/or living in trailers. It’s just a hunch I have.
I like the idea of baby spirits floating around on clouds, carefully selecting their parents. That’s why when Fireboy and I kicked off our IVF journey I made a fancy brochure that touted all our most appealing features. I was really going after the sophisticated, discerning baby market—the way a five star hotel would lure choosy guests. My informative brochure showcased all the benefits of selecting us as parents; from instant Ivy League legacy status, to our wide variety of in-house pets, to the high level of tech support and extensive library—including the complete and final print edition of Encyclopedia Brittanica! Swimming lessons! Travel to exotic destinations! Organic, home-cooked meals! I was really surprised when time after try, we had no little taker.
Then again, having me for a mom probably won’t be all gravy either. While I still remember each and every song, game and art project I picked up in during my 12+ years of teaching, I can’t run very fast anymore. I spend the better part of one day a week hooked up to an IV. And, if we’re being honest, I just might not be on this planet for very long.
I was in college when my mom died. Her death gutted me in a way I probably still haven’t full recovered from, but I loved her with all my heart and if I had it all over to do again—floating around on a cloud, clad in a heavenly diaper—browsing to discover the one perfect mom for me—I’d chose her again in a minute. She was and is, my “real” mom.
So, it makes my heart sing that there’s a baby that’s chosen me for a mom. Finally. A baby who assembled a team of brilliant doctors and a dedicated surrogate in order to incarnate Earthside. And while I might not be this little person’s “real” mother in the eyes of some, I know what the deal is. Also, while we might not be technically related, because this kid picked us, and the trouble it’s gone through to get here—I already like its style.
I used to be a really nice person. I had one mood, and it was good.
Nowadays, I am feeling not so nice. I have several thousand moods and they range from mild annoyance to fury. There’s a condition people refer to as “chemo brain”, which is the short-term memory loss and general absent-mindedness that people report after having undergone chemotherapy, but no one gave me a heads up about cancer rage. Cancer rage is the name I’ve given the condition that results when your body, mind and spirit all hurt so much from the heavy lifting of this disease that you involuntarily become kind of a jerk. Symptoms include eye rolling, sarcastic comments, pouting, stomping, mood swings, cracking your chewing gum and aggressive lane changing.
If I had a dollar for each time I’ve lashed out at someone I love, I’d take them all on an all-expenses paid getaway. (Which they deserve. Trust me.) The thing that is so very diabolical about cancer rage, is that it happens when I am in very real physical pain and feeling isolated and the end result is that the pain is still there, but the isolation is multiplied tenfold. I’m sorry. I’m sorry. I’m sorry . . .
So, while I used to be 100% nice and 100% cancer-free, I figure between my lungs, lymph nodes, bones, gall bladder and liver, my current TMP or, Total Mean Percentage is hovering around 62%. Since I just invented this condition, I don’t have any idea what the end-stage looks like. Maybe once I hit 75% TMP I will transcend petty anger and feel only happy again. Maybe I’ll get so freakin’ mean my teeth will turn into fangs and I’ll grow scaly armor and wings like a dragon and I’ll fly into a volcano. Consider me the world’s first cancer rage research scientist. I’ll take notes and report my findings. I apologize in advance if they seem bitchy.