In silence

Well. I was planning to tell you how last week I drove through the insanely beautiful-in-Fall part of Massachusetts to my meditation class, soaking up the said beauty. I wanted you to know how the whole nature thing was really doing it for me in terms of calm, and being present, and how a line the leader read from a book before we were to all sit: How do you find your way? In silence. 

I was planning also to tell you that because a teeny tiny pinhead-sized hole at the top of my mostly-healed abdominal scar refuses to close, I have to go back to the hospital so the surgeon can check it out, i.e. cut back in and see what's up. Most likely it's a stitch that did not dissolve after my surgery in June. It's not a huge deal apparently. It's a little deal. I keep repeating that to myself.

I even had planned a mildly humorous line about how it has to do with stitches and the procedure is happening on Halloween hahahaha. And then.

And then later that week my cousin died, ill for a long time.

And then the next day my father was in the ER with a tingling right hand, which turned out to be a mass on his neck, possibly compressing his spinal cord.

And so now my own concerns about my identity after cancer, about taking the PARP inhibitor and its side effects, about my own longevity or lack thereof, those I need to push to the side.

Now it is about my cousin, who I knew was sick, but did not guess was getting worse. Who I hadn't seen in years. Now it is about my 83-year-old father who has never spent a day of his life in a hospital, who is now surely going to be spending a lot longer than that.

My illness is not the only illness, my fears few among millions. A small drop, really. And yet it feels like the earth below my feet is threatening to crack entirely open. And the only way through is through.

Enormous Changes at the Last Minute (PARP star)

I've always loved the book Enormous Changes at the Last Minute as much for Grace Paley's sublime voice as for the aptness of the title to describe so many situations in my life. Last week the title popped into my head again two days before I was to begin a clinical trial, my maintenance plan, or as I like to call it, chapter 2 of The Big Horrible. 

Let me back up a little. The clinical trial I was going to be on was testing the efficacy of a combination of immunotherapy (promising for several cancers but not shown to be very effective for treating ovarian) with a drug called a PARP inhibitor. PARP inhibitors stop the PARP protein in cancer cells from repairing themselves when damaged. 

Up until very recently, PARP inhibitors have shown great success keeping away disease in ovarian cancer patients who have the BRCA gene mutation. While this is great news, BRCA-positive patients account for only about 15% of the 300,000 women diagnosed with ovarian cancer each year. OC patients without the gene mutation could not get a PARP inhibitor for maintenance, except via clinical trial. 

But while I was away on vacation, a paper published in the New England Journal of Medicine showed that one PARP inhibitor significantly increased progression-free survival (PFS) in ovarian cancer patients, including those who are BRCA-negative (like me). Given this, I'm now able to get this drug without joining a trial.

Enter Enormous Change at the sort-of Last Minute!  No trial for me. Instead, I'll now take a PARP inhibitor daily (called Zejula, or Z. for short) for my maintenance plan, under the care of my current oncologist.  While Z. comes with its own set of possibly-serious side effects, I'm definitely less anxious with this new plan.

For one thing, there'll be no question if I'm getting the PARP inhibitor or a placebo. And for another, I'm under the care of my trusted oncologist, rather than the trial doctors and nurses. It's 2 pills once a day in my house, rather than pills plus a monthly infusion in the hospital. 

What I give up is a 40% chance of getting a PARP inhibitor combined with immunotherapy (which shows great promise), and a 40% chance of getting the PARP inhibitor plus a placebo. What I get is a100% chance of getting the PARP inhibitor. I'm happy with that. 

I began taking Z. 2 nights ago, so I don't have a huge sense of side effects yet. I have read that mostly, they can make you nauseous, constipated, and really really tired. PARP inhibitors lower white blood cells, red blood cells, and platelets. If they get too low, I might need a blood transfusion. Really hoping that doesn't happen. 

So at the moment, I'm feeling good, my hair is ever-so-slowly growing back, and I'm taking a drug that significantly increases progression-free survival (PFS) of this disease. I'm not ecstatic, exactly (stay tuned for Tales of Assorted Side Effects!) but, compared to the other enormous change at the last minute this past March, I'm feeling hopeful. And grateful, always grateful. 

Cold comfort

Hello people who read this,

As you may or may not have noticed, it's been a few weeks since I last wrote. I was on vacation for two of them (massive thanks go out to the city of Chicago for the architecture river cruise, to Amtrak Empire Builder for a glorious ride through snowy Glacier National Park, and to the city of Portland for your consistently fantastic coffee and people-watching. and for fabulous friends in the Laurelhurst area), and for the last few days have been flat-out with the common cold, probably picked up from traveling on planes and trains.

I can't tell you how happy it makes me to write, "common cold." Or, to write, "common." I mean don't get me wrong, the cold is kicking my ass briefly, but it's clearly just a cold, and it's on its way out. The common cold. Like everyone gets. Just a normal cold. Normal!

I can't lie, I was really nervous when I knew it was coming --- like, my immune system has taken a serious hit this year, right? And the first day, when I couldn't get out of bed until 11:00 am, and was coughing and short of breath, I thought, this is it. My immune system is bust, and this cold will be the end of me. I'm going out on a cold.

Turns out it was "just a cold," and even though "just a cold" still feels crummy, it has the perk this time of feeling "normal," and at least right now, a normal feeling is a luxurious feeling to me. Please raise a tissue with me in celebration!