Wok on the Road

I love our electric wok. It sat forgotten and alone in a kitchen cabinet for years, unused and unappreciated. One day in early June I heard a whisper. “Open the cabinet. Yes, this one, way over in the corner.” When I did and saw the black electric wok with its clear glass lid, a bright idea flashbulb popped.

The wok has gone on the road. It has become an essential tool for making our suppers when we have to stay at the Inn at Mayo in Jacksonville for Tom’s chemo. I’ve sauteed chicken thighs with shallots and mushrooms, cooked yellow squash, salmon, even spinach, and shrimp fried brown rice. All kinds of comfort food.

Tonight I used the smooth nonstick surface to do double duty: first it cooked a diced Idaho potato, onion, chopped garlic and oregano in a smidge of olive oil; then after I turned the potatoes out onto our plates, it scrambled eggs. We enjoyed that feast with toast, strawberry jam, and Earl Grey tea.

We’re in the bedroom now, reading books (well, I’m typing for a few minutes, then I’ll read). Tom has blood labs first thing, then a meeting with his hematologist/oncologist, then a fun-filled afternoon of Rituxian (Rituximab) and Treanda (Bendamustine).

He drove us the whole six and a half hours from Pensacola. He’s whipped, and I’m concerned because he has a little congestion and seems to be trying to get a sinus infection. Plus, the muscle area on the right side of his neck near the catheter for the Bard Power Port in his chest got sore several days ago and is growing more uncomfortable. Needless to say, I’m glad we’re here and that he’ll be seeing his doc in the morning. I’m sure he’ll be fine. I just hate for him to go into a chemo session not feeling well. He felt great Sunday; this came up suddenly.

A good night’s sleep can be powerful medicine, and our wok supper paved the way.

Hope all yall’s evening is peaceful and comfortable.

 

Thanksgiving in August

I’ve heard gratitude is an attitude. Being a glass half-full kind of person, I believe that’s generally true. But sometimes it feels more like the flood waters from a burst levee and you find yourself suddenly engulfed.

That happened to Tom and me yesterday. The  flood waters of gratitude are more like the Sea of Galilee than the tragic debacle of a New Orleans drowned in 2005 by the breaches of Hurricane Katrina. The waters of gratitude are buoyant. They lift you up.

Tom came into the kitchen earlier than usual yesterday morning.  I was doodling around, emptying the dishwasher, drinking Komodo Dragon coffee, and listening to Will Patton read James Lee Burke’s latest, the fantastic Wayfaring Stranger.  When Tom spun me around for a hug and a morning kiss, my instant inventory of flashing eyes, bright smile, and waves of energy told me he had his groove back.

This Wednesday we’ll drive back to Jacksonville for his third R-Benda cycle, so he’ll get knocked down again for a few days, but a day like yesterday will carry a person through from point of light to point of light, false dawn to true sunrise.

We live in a pine forest. Our home is in a clearing surrounded by the woods. Pretty darned incredible paradise. Yesterday’s weather looked iffy and I wanted to mow the clearing in case it rained later in the day. If we left it to grow until we returned from Mayo next Saturday, with the August heat and humidity, the grass would be halfway to my knees. So after breakfast, newly wise from my recent poison ivy experience, I put on a long-sleeve shirt, long pants, socks and jogging shoes, gloves and a Rebecca of Sunnybrook farm hat, and headed out to crank up the little John Deere.

Little John Deere

The morning wasn’t too hot. There was even a little breeze. Vigilant mocking birds kept an eye on me and a resident hawk waggled his wings overhead. About an hour later I was in the back when a movement caught my eye. It was Tom, on the ancient 60 hp Case tractor, tipping his Tilley hat and blowing me a kiss! He was bush-hogging the area between yard grass and woods where we sow wheat, oats and rye every fall for the deer, wild turkeys and migratory birds.

The (Very) Old Case Tractor

Two hours later we were done: dirty, sweaty and happy. After lunch and a shower, Tom rested in the bedroom with the latest book he’s reading, waiting for the usual afternoon “slump.” I spent some time writing and then went to the kitchen to start dinner.

He bounded into the kitchen, smiling. “All day, no slump! I expected it, but it didn’t come. The work outside felt good. There’s a lesson in that,” he said.

Our supper, coincidentally, was roast turkey breast, baked sweet potatoes, green peas and cranberry sauce. Thanksgiving in August.

IMG_0304

Southern Penicillin

IMG_0272

Blog friends who know me from my old blogs written in my real name will recognize this phrase: southern penicillin. Its basic components are a baked sweet potato, some kind of dark leafy greens cooked in a broth (my seasoning of choice is a smoked turkey leg, a strip of Kombu, chopped onion and garlic), and turnip roots, yellow squash, speckled butter beans or whatever other veggies ring your bell and are available. And a pan of cornbread cooked in a Lodge cast iron skillet.

Our local Publix grocery store has just had a $5 million makeover. My favorite part is their new and improved produce department, with all new coolers, lighting, and best of all an expanded greens and organics section. The department manager, Travis, came up to me the other day when he saw I was picking out a pretty bundle of extremely fresh-looking organic collard greens. In his hand was a very dark green, ruffle-leaved ball of organic kale. It was fragrant and beautiful. He knew I would have to buy some. The kale went into the pot with the collards and made the most amazing pot liquor. Tom got a cup of the strained pot liquor to drink along with his veggies. I put both greens and that power broth into a big mug. Tom has always loved this type of supper, but now, while we’re in  “chemo cuisine” mode, he craves it.

Simple food, complex benefits.

When a Wrong Diagnosis Wreaks Havoc

Pull back your leaping mind. That’s not where I’m going with this. This weird saga began almost exactly a month ago, and I’m finally ready to tell it. I can almost see a glint of Abbott and Costello humor in it. Almost.

I have a one-word note on my calendar July 1st. It’s scrawled in my tiny, nearly illegible print and circled: “rash.”  Same notation the next two days. By the 4th of July, I felt like the rocket’s red glare had lodged in my skin. The note for that day: “awful rash, right trunk.”   Next day: “rash, getting worse and spreading, slow creep down right leg.”  It itched like crazy. Tom initially thought it might be something like poison ivy and suggested I apply clobetasol, a topical steroid gel he keeps in the medicine kit. I did put a little bit on the first day, but it didn’t seem to do anything, so I quit.

By Sunday, the stuff was a roughly 16 by 9-inch mess of weeping blisters from just under my right rib cage to mid-thigh and a wide area around my waist. I even had a cluster of blisters on my lower lip, near the corner of my mouth. Tom and I would be driving over to Jacksonville July 9 for his second two-day chemo cycle at Mayo starting on the 10th. I realized there was some process at work that was going to get a lot worse before it got better if I didn’t get some help, so I went to a local urgent care center and was seen by a family medicine guy.

His verdict? “Looks like shingles.” I told him I had the shingles vaccination a couple of years ago, and pointed out the blistery area on my mouth. That did it. He changed his diagnosis to Herpes Simplex Virus One, and prescribed a massive dose of Valtrex.

I was upset. I understand a person’s body may react in strange ways to stress, worry, and lack of sleep. But this? And then I started thinking about Tom, and how I’d read that folks taking chemo shouldn’t get vaccinations while they’re in treatment because the viruses can become active in their systems. HSV-1 is a virus. I was told I had it. Was there a possibility I was endangering Tom? Oh, boy.

First thing Monday morning I faxed and called Tom’s oncology nurse at Mayo and explained my situation. She was clearly concerned, said she would speak with Dr. Tun and get back to us. Sure enough, she called back advising she was calling in a prescription for Tom to also begin a massive dose of Valtrex immediately. I felt terrible.

A couple of years ago, when Tom and I planned one of our regular summer trips to the Western North Carolina mountain town of Maggie Valley for some of that cool air, I bought what I call a “porch sittin’ dress.” It served it’s purpose well, but man, was I glad to find it hanging in my closet. By the time we drove to Jacksonville, it was the only thing I could wear. It hangs loose and has an absorbent, soft cotton liner.

 

IMG_8949

By the time we left for Jacksonville on Wednesday, the 9th, my right trunk area looked like a deeply pickled side of raw corned beef. Then, about an hour into our drive, my left thigh started itching. I looked, and sure enough, the rash had jumped to the left side and was clearly still on the move. The Valtrex hadn’t even slowed it down.

That did it. I whipped out my laptop and emailed the situation to our internist’s, Dr. Macklin’s, secretary and traffic director extraordinaire at Mayo. As I’ve noted in an earlier post, Tom and I have participated in Mayo’s executive health program for years,  so we were no stranger to Kim. She is a dedicated Energizer Bunny of schedulers, a magician. Within the hour, she had me set up to see a dermatologist the next morning. Tom was hot to take me straight to the Mayo Hospital emergency room as soon as we arrived, but once he realized our room at the Inn at Mayo was only a short walk to the ER, and I didn’t have a fever even if a secondary infection might be trying to take hold, he simmered down.

Next morning came and I left Tom in the room preparing for his own full morning of appointments and afternoon of Rituximab and Bendamustine, and headed down the long, climate-controlled corridor from our room at the Inn past the Cannaday Building, the bustling Mayo Building where the hospital is, and to the Davis Building, where I took an elevator to dermatology. Young Dr. Gordon had been prepped with the info on my local urgent care diagnosis. After seeing the rash, he began shaking his head, brow furrowed. He quizzed me closely on whether it was possible I had come into contact with poison ivy. I explained that we live in the woods in a Longleaf pine forest, and that I take frequent walks, so while I couldn’t recall seeing or touching any, it was impossible to be sure.  He expressed the belief that the rash almost certainly had to be the result of a plant such as poison ivy, oak or sumac. Dr. Gordon stepped out for a moment and returned with another dermatologist, Dr. Cappel, who examined the rash and said he concurred with Dr. Gordon’s thoughts on the matter. Dr. Gordon and his wise-eyed and kind registered nurse, JoAnn, took several cultures and performed a punch biopsy. She gave me several large non-stick bandages to cover the blisters. I began to feel better already, knowing that whatever the heck it was, they were going to get to the bottom of it, and fast. He started me on a 14-day course of Prednisone and said to continue the Valtrex, at least until the lab results were back.

Since I was banned from the chemo unit for this trip, miserable me picked up the prescription and decamped to the motel room.

So what was it? Dr. Gordon called me first thing Friday morning and told me I could stop taking Valtrex and so could Tom.  There was no HSV, no shingles. It was poison ivy. I later learned we caught it before a secondary infection could get going, thank heavens. The Prednisone is powerful stuff. Kind of two-edged sword and not something I would like to have to take very often, but it was clearly the medicine I needed to get the situation under control. Bizarre, huh?

IMG_8953

Tom said, “I knew it! You got into something. What was that stuff you were pulling out by the little pool house?”

Once we were back home, I thought about his words and clearly recalled an afternoon at the end of June, either the 29th or 30th, when I got frustrated with all the blackberry briars and unidentifiable green weeds that had grown up in a narrow space between sidewalk and chain link fence  just a sidewalk away from my pretty little under-the-stairs pocket garden of flowers and herbs. Wearing jogging shorts and a tank top, I put on gloves to protect my hands from the thorny briars, and started pulling furiously with my dominant hand, the right one, up my thigh and probably even touching my midriff when the loose tank top billowed out. It was hot and I didn’t get very far with the project.

So Sunday afternoon, I went out with my camera to take a look, after first reviewing internet pages of images of the various forms poison ivy takes. There, even more luxuriant than before, thriving from the abundant rains we’ve had this summer, was the prettiest, scariest crop of poison ivy a person could imagine. I took pictures (from a distance), went back inside, and locked the door! Attack of the killer poison ivy!

IMG_0236

All the blisters dried up within the week, and soon my skin only looked like there was a very large, geometrical deeply tan birthmark with lines running in all directions, no longer purply-red. It’s still visible, but fading fast.

Tom’s next trip to Mayo for his third R-Benda cycle is coming up fast. We’ll drive to Jacksonville a week from today, with chemo on Thursday and Friday, then a Neulasta injection on Saturday.  And I plan to be sitting in the “guest” chair right beside him this time.

 

 

 

Don’t Call Me “Caregiver”

Does anybody else have a problem with the word “caregiver?”

Okay, it’s true my husband has mantle cell lymphoma. And yes, when we found out, I bought a big yellow 3-ring binder and tabbed it to keep track of labs, tests, treatments, doctors, reports, travel arrangements, research, emails and faxes.

Yes, I sat in on Tom’s bone marrow biopsy and shared big-eyed looks with the skilled young woman twisting the auger.

Of course, I massage Tom’s feet, legs, back, arms, shoulders and neck until this lean tough man who groans at first finally purrs like a happy tiger. This man who sneaked me peanut butter and jelly sandwiches and spent the night in my room when I was in the hospital a few years ago. This man who would kill anybody before breakfast if they put a dent in my morning smile.

Call me Tom’s mate, best friend, lover, running buddy. “I am Tom’s caregiver” is a sentence that will never cross my lips. It makes him sound passive in his own care, even incapable, and that’s so far off the mark it could be in outer space.

The cover of our bright yellow ring binder has a transparent sleeve. I slipped in a photo of Tom and me, our arms around each other, big conspiratorial smiles. It’s what the doctors and nurses see when we go in for appointments. Tom has the diagnosis, but we both have the disease, and we will share that journey step for step, along with the remission, the recovery, and living our next dream.

So please, don’t call me “caregiver.” Just call me Sally.

Dose of Inspiration

When you or the person you love most in the world pulls a bad diagnosis out of life’s jar of gumballs, it’s all too easy to become overwhelmed by the silty, swirling slew of internet assertions, listservs, support groups, tiny print scientific papers and raw emotion engendered by the hard kernel of fear that pulls you down, down, down into the brackish dark water.

I was so there last week. Tom and I had recently returned from yet another trip to Jacksonville for his second chemo cycle. The nausea and fatigue were hanging on longer than they did after the first treatment. For the first time in our thirty-plus year marriage, I began to feel the small pond of our fourteen-year age difference widening into a gulf. It was a terrible feeling.

The  afternoon’s prototypical panhandle Florida late July flash thunderstorms and thick air matched the brewing storm I could feel behind my eyes as I drove to the post office and the grocery store. My throat felt lumpy like I was about to cry or scream. Hoping for distraction, I turned on the car radio. Rather than mere distraction, I found inspiration from the gifted host of the co-produced NPR TED Radio Hour, Guy Raz.  The topic for his show that day was an exploration “of the minds and bodies of champions who achieve extraordinary feats.”

In the segment I listened to, he interviewed swimming champion Diana Nyad, who at age 64 became the first person to swim from Cuba to Florida without a protective cage.  She attempted the swim four times unsuccessfully over a period of 35 years. It almost cost Nyad her life. But in September of 2013,the year in which her self-described mantra was “find a way,” Diana Nyad succeeded. Her spirit and physical prowess are phenomenal.

The TED Radio Hour interview changed my personal channel altogether and I had an epiphany that I needed to stock my emotional quiver with inspirational arrows. And that I needed to get back on track with my creative projects, to write my way through this storm.  I’m grateful to my trusty old car radio, and to Guy Raz and Diana Nyad for guiding me with the touchstones of their words all the way from the bottom of the river back up into the fresh air and light. Because of them and the serendipity of the moment, I figured out how I could write about Tom and my experience with MCL. Because of them, I’m writing again and there’s hardly a better feeling in the world.

So now, to keep that inspirational thang going, I’ve started looking at more TED talks, listening to magnificent music, writing  and playing my big old rafter-rattling piano again.

Here’s Diana Nyad’s TED Talk:  “Never, Ever Give Up.” Enjoy.

 

“The Guy”

It’s the med techs, nurses, schedulers and physician’s assistants that make this deal a whole lot easier to swallow than it might otherwise be. They’ve got situations and issues of their own without a doubt, but you would never know it.

Take Ray. He’s the med tech at our local cancer center that takes Tom’s blood labs every two weeks and flash faxes them over to Mayo. The luck of the draw got us to Ray the first time we went in. Let’s see, that would have been June 26, just about one month ago.

Ray’s not young, not old, with blue highways of experience in his calm, dark eyes. He retired from a career in the Navy, did a high wire act in real estate before everybody crashed with or without a net, then went back to school for his med tech certificate. Ray is kind and he is careful. Checks everything twice. Gives you the feeling he knows his bit of the interlocking puzzle is a corner piece.  And he’s right. These periodic blood labs let Tom’s Mayo docs assess whether he is ready for the next treatment cycle.

Ray uses a winged infusion set , sometimes called a butterfly needle. Tom thinks of it as a dragonfly, because its proboscis dips delicately into his blood, sure and unquivering, even while it fills several vials. The technology, along with Ray’s steady hand, results in no bruising or discomfort.

After the first blood-letting, we asked Ray if he would be available to do this every time. “Sure,” he said with a smile that put lights in his eyes. “Just ask for the guy.” We must have looked confused. He waved a hand at the other blood-letting stations in two rows around the small room. Sure enough, all the other med techs were female. He’s “the guy,” and we’re grateful to have him on the team.

 

Respite

We sent a postcard to ourselves today, a reminder of secret afternoons spent in cool, dark caves. Curved into a comma, I lie on top of our blue Oxford pinstripe sheets, heart beating in rhythm to Tom’s beside me. The feather pillow dressed in softest butter yellow rises and falls over his chest, where he has enfolded it for warmth. One degree too cool and the air-conditioner is nothing if not efficient. I touch a freckle on Tom’s arm and covet the thick fringe of dark eyelashes that tremble with each inhalation and exhalation. I watch his lean left cheek, the one I can see, as it blows out with each breath. Not a snore, but a musical rumble, a ripple of life.

Freight Train

Tired and nervous as a cat, I am sitting in Room 138 of the Courtyard Marriott adjacent to the Mayo Clinic in Jacksonville. Tom is in the shower, preparing for a routine EKG at 11:50, then an appointment with head and neck surgeon and otolaryngologist, Dr. John D.  Casler at 1:15, then a 3 p.m. with a nurse practitioner to go over labs and clear him for general anesthesia tomorrow morning for Dr. Casler to remove the enlarged lymph nodes from the left side of Tom’s neck.

11:45 now, and we’re in the Davis Building. Tom has gone in for the EKG, which we are well-accustomed to, since we both get one every year as part of our physicals.

It’s been so many months since I kept a regular journal  the very act of putting ink onto paper feels strange, revolutionary.

I’m so anxious about Tom’s health I can barely focus my eyes. He would say I am hollering before we’ve been hit and of course he is right about that. Nonetheless, I feel half-paralyzed, jerky, spastic. Much too distracted to read a book.

I see that I am in no-way prepared for our “real” aging, possible illnesses and eventual death. Not his. Not my own. And it’s coming one-eyed and fast, like a freight train out of a tunnel.