clarity
As we all prepare for Thanksgiving next week, I want to confide a few secrets. Shh, it’s just between us.
First of all, this photograph was taken with my iPhone while noodling away (yes, a $4.99 blue pool noodle) in my swimming pool. And… as tempted as I was to edit it, add filters and doctor it up as a “work of art” like I have done with all my previous photographs—in the spirit of this post, I left it alone.
Although this past year has been full of challenges, those difficult days melt away when I start floating around. I have Bluetooth ear plugs attached to a wire that I put on the top of my head, shove on a baseball cap, add my sunglasses (missing the rubber stoppers that goes inside the metal prong for my nose), put my phone on the side of the pool, get out the noodle, the gloves and the fins, kick and tread water around and around. Sometimes I blast a 70s Led Zeppelin playlist, Beyoncé’s Homecoming Coachella concert or today it was the Kills’ latest album. And, dear reader, I often talk to friends while I bounce on the noodle and not do much of a workout at all.
I am blessed to have a pool. Water therapy loosens the stiffness from the scleroderma and sometimes helps the neuropathy. But, the heating bill is insane. Don’t tell Mr. Bouton!
Second secret: the cancer came back at the end of this summer, for the sixth time. Between different procedures and tests I was at the hospital just about every week for six weeks. The final diagnosis: 4-6 months left or we have another infusion protocol that is relatively new but may work for my continued relapse of diffuse large B-cell Non Hodgkin Lymphoma (DLBCL). It’s every three weeks.
“So doc,” I asked, “ how many of these infusions will it take?”
“Well…he answered slowly and in a measured tone, “as long as you’re alive. And it’s a 30-50% chance of efficacy. If we get a clear scan, you could take a break, for awhile, then restart.”
“No way” I said, ” I want to die. I am tired, leave me alone.”
Then I spent two days in bed, getting up only to eat. I took lots of painkillers and anti-anxiety pills to numb out the agony of such a decision: to fight or succumb to the inevitable. Once you give up on treatment, death comes on faster. After two days I got into the pool (where apparently I do my best thinking), and decided to fight. The more I talked to Dave, the more clarity I had that fighting was still the better alternative than waiting for this cancer to continue its virulent spread not only all over my breasts (where it has grown into a scaly monster that disgusts me more than the bloodiest looking Halloween costume) and into my brain, which seems like the next logical move. After 48 hours I concluded lying in bed feeling tired and nauseous with possible swollen legs is better than having a stroke that takes out my ability to talk and write! We’ll save that part for when the infusions really stop working. You’re all on high alert to help procure bags of morphine and pour that shit down my port.
I’ve had one hit of the new chemo infusion and already the scaly monster has morphed into a smoother, more “user” friendly red blob. No painful welts and no purple flaking. I go back next Monday the 20th for another 1 1/2 hour session and if I am going to cloak this every three week visit in more positive terms: it’s better than dialysis. And just think, in a few more months I’ll know everyone in that infusion room. More friends (and hopefully readers of my blog!).
My third and final secret is that I love Thanksgiving. It’s controversial these days, I know. At the risk of offending you, dear reader: I am patriotic. I love this country. I hate the political divides, but I call it growing pains. We’re a democracy, well, actually a republic trying to figure out what we want; what is most important; who we should fight for; what we’re fighting about, and who is worthy of our support. We’re a young country, a very wealthy country— a world power beyond what our Founding Fathers could have imagined. This is in spite of our troubled history that is tainted with the slaughter of American Indians and taking their ancestral lands, and using slaves to till our farms to produce cotton which required painful picking in harsh conditions.
However, judging from those who clamor to get over or through our borders— more people want to live here than in their own countries, unless you’re a terrorist and want to kill us, especially the Jews, but I’ll save that sobering thought for another blog post.
In the meantime, the idea that Western values of freedom to speak, worship, and work to fulfill your dreams still exist. These rights were hard fought and so very precious to our survival.
Celebrating Thanksgiving as a national holiday is our secret weapon: what country sanctions a day off whose stated goal is to honor our freedoms with the ones you love? To take time and find appreciation for even the smallest of blessings? You don’t even have to eat turkey! (I gotta say though, smoked turkey or deep fried turkey is revolutionary, and please, dark meat is always the best choice). Go vegan, eat samosas, make the tamales, stuff yourself with sushi, Thai coconut soup, ramen, and fragrant fried fish. Just don’t leave out pumpkin pie!
Although I am still riddled with disease and infusion #2 might be a little difficult I am so happy to be here—even if I need to lay on the couch while my kitchen is bustling with preparation.
Luckily the couch gives me that same clear view of the mountain with the glistening pool that invites me to float, to listen, to think, to stare at such beauty, and let you in on my secrets.