Tagged: Mayo Clinic

TL;DR: Laurel asks the universe a question. Gets answer.

help

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:

mistakes

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.

Next!

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.

 

 

 

 

 

Unsubscribing to life

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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.

 

 

 

 

 

Meanwhile, back at the ranch

The last few weeks have been a blur. I had a strong intuition I had to leave Vegas. For good, or else I would end up in the hospital there, and die. I heard a voice say it. I don’t remember packing, or driving away.  Just showing up at Katie’s house with a bulldog, and a parrot and Brett. Poor Katie. Anyway, I ended up in the hospital just like I knew I would, but I didn’t die, so I must’ve done the right thing.

Then it was out of the hospital, time to start the new chemo. I don’t know how I didn’t expect it to be different this time – I’m so much weaker. Did you know I now have ruched skin? I have more folds and pleats than a 90’s Valentino gown. I am thinking about creating a puppet theater where my arms will star as the front legs of famous elephants through the ages.

Finally the big day arrived even though my insurance carrier, Blue Shield, to whom I pay nearly $700 per month for a PPO plan, is balking at covering one of the medicines my oncologist wants included in my latest protocol – Perjeta (aka Pertuzamaub) a fully FDA-approved, aready-on-the-market HER2 breast cancer drug created by the nice folks at Genentech.  Why? Nobody knows, and while the insurance people push their papers around, there’s just this cancer taking a casual stroll through my body so I guess a decision maker somewhere said, “Ah, fuck it, two out of three aint bad…” so I will get only Herceptin and Gemcitabine this go-round.

I get what I get, and I don’t get upset. They hooked me up to the tank and the view was very pleasant out the window of the Mayo Clinic and Hil and Fireboy came and we chatted and I soaked up all the medicine like a thirsty loaf of french bread and then it was time to leave.

As I started down the hall it was as if with each step, I sunk an inch deeper into the floor. By the time I made it to the nurses’ station I felt as though I were knee-deep in linoleum. Someone put me in a wheelchair. Somehow I got home and then crawled into bed and then I started barfing. I felt like a doll with a hollow plastic body. I slept and retched and eventually, I started hallucinating. When I could, I’d pry my eyes open to stare at the geometric patterns spreading off into all directions. Millions of teeny plus signs on top of plus signs on top of plus signs. Chevrons. A flashing black and white snake that strobed the entire room. I couldn’t eat or drink anything. Not even water. As the days went on I had the sense things weren’t going well, but I also didn’t really care. Rather than the panic I’d been choking down for the last few months, I was starting to sense a strange relief nudging in. I felt as though a giant pair of scissors were descending from the sky to clip me from a silk rope so that I could be freely tossed, cartwheeling in slow motion, on to a giant pile of pillows.

Katie crawled into bed. “Don’t leave me.” she whispered. “You’re my sister.” I told her not to worry, that I was going to handle shit for her, I would pull strings and she wasn’t going to have any more problems again, ever. Like in the afterlife I have some deep mobster associations, or juice or something. I think that’s what I said. I think she laughed. Maybe I dreamed it.

Every third or fourth time I opened my eyes, Hil was rubbing my feet. They were 100 miles away but it still felt good. Once, I opened my eyes and she was standing on a chair, attaching a string of party lights to the ceiling. Another time, I peeked through one eye and she was hanging bones and lace and folk angels on a hook over a chair. Through it all,  I dry heaved constantly into a silver ice bucket.

This went on for six days. When I opened my eyes Hil was gone. She left behind magic wands made of driftwood and string and a pair of magical, bejeweled Mainifesting Earmuffs from Beezy which I now wear to bed every single night.

magicks

 

Katie works on a paint by number painting of labradors in the evenings. She got us berets to add to the art colony atmosphere and we wear them while she fills in the spaces with her brush and I sit on the sofa and Fireboy feeds me on the hour like I am a helpless baby bird.

It feels like the medicine might be working. I don’t know which will disappear first- me or the cancer. Let’s find out, shall we?