Mean Mr. Mustard

The last few days have been tough. The night before my next round of chemo infusions, my right arm became unexpectedly painful. Very painful! I wondered if I had sprained it somehow, but the pain was deep and unlike typical muscle pain. That night, I woke several times with drenching sweats and pain unrelieved by my pain pills. An exam the next day at the oncology center determined that I had phlebitis--an inflammation of the veins in my arm.

One of the toxic chemicals being infused directly into my veins is nitrogen mustard. This chemical is a schedule 1 substance in the Chemical Weapons Convention. Mustard gas was used extensively in both world wars with devasting effects. Interestingly, it was the first compound used in cancer chemotherapy. It has the ability to prevent the normal functioning of DNA and is also a blistering agent. It seems that my second dose of this poison traumatized my veins leading to an inflammatory response.

Antibiotics and a stronger pain pill should see me through the next few days. I took my infusions this week in the left arm. Hopefully, it will hold out while the right arm heals. If not, there is a sleeve device that can be inserted into the vein to protect the walls during infusions.  I hope to avoid that because there is enough intrusion in my veins without inserting a device.

The sun was shining triumphantly today. Viola and I sat outside by the garden. I thought of the lovely day last fall when I held one of Monet's hydrangeas in my hand while visiting Giverny. This memory stimulates powerful healing energy flowing into that right arm. Like Monet, I derive a deep pleasure from gardening which touches the essence of being alive.

Cool Enormity

It brushes your cheek in this chamber

coolly, strangely de-oxygenated

with a taste of the sacred, secret bitters

Where does it come from, cool enormity?

There is no choice but to inhale

It’s the only breath you will take this afternoon

The worn, tiled floors should be waxed

They should keep their appointments in this place

Other people like you are in those chairs, waiting

lolling like damaged dolls each with one eye up

I take a picture; they don’t care

and never once look, cool enormity

Now you ask yourself, now you let

it crawl all over you as they hit your vein

They ask, “Would you like water,” and

you decline, preferring cool enormity

Cool enormity—is it a drug in a bag?

or a woman in a white coat with a tiny caliper?

You are the drumming love in this cool universe

You are the heart-beating, white hole of existence

You will survive, enormously cool

©2009 Viola Weinberg

Here we go loop de loo!

Loopy may best describe the last few days...or maybe sleepy, dopey, mopey, pokey, anything but okey dokey. Lots of long naps and little else it seems. The drugs are certainly having a cumulative effect--effectively leaving me without much energy and full of weird aches.

Last week included a drug to boost my white blood cell count. My bones have been aching somewhat from the pressure that creates in the bone marrow. I don't believe I ever had any concept of feeling my bone marrow before this. The other m

ain problem, besides overriding fatigue, is the digestive tract. Discomfort and frequent nausea along with a terrible taste constantly in my mouth.

Today, I feel a little better. It is the last day before I get a new round of chemicals tomorrow. I watched a Nova special on preserving ancient Tibetan Temple art and a great biography on Les Paul. You have to get creative when when you're wide awake at 4:00am. Maybe after my morning nap, I will be able to actually read a book. Before initiating chemo, I thought I would fill my days at home reading lots of books, practicing some guitar lessons, organizing my desk, etc. But the best laid plans...

Viola is thinking about driving into Sonoma to get some Chinese food later today. I hope to feel up for a little ride. The sun is shining and the Sonoma Valley looks to be the most beautiful place on earth today.

A Swirl of Chemicals

After two days of heavy injections and infusions, I feel fatigued and somewhat disoriented. Two days ago, I received the weekly large dose of medications, yesterday I was infused with three additional bags, and today I will receive a shot to boost my white cells back to healthy levels.

The latest protocol, the "Stanford 5" for Hodgkin's, shortens the duration of treatment to minimize long-term side effects. During this compressed treatment, the drugs are delivered in more intense dosages.

As Viola drove me home, I began to feel the effects of the drugs. My teeth started to hurt and my tongue and mouth burned. I hit the bed immediately when we arrived home. My nerves give me an awarness of my entire body with indescribably jangled feelings. My sleep is disrupted by a frequent need to urinate. I also awakened a half dozen times drenched in sweat from the heavy steroids delivered with the cancer drugs. In spite of five nausea medications, I am feeling wretched.

The red syringe, Doxirubicon, is injected rather than dripped into my veins because it is so toxic. If it the needle where to hit the wall of my vein, or

 even if a drip struck my skin, there were be serious tissue damage with the risk of infection. It will disperse in my circulation where most cells will resist the toxic effects. Growing cells, especially the cancer, will not survive the toxic effects. Of course, this leads to the common side-effects of hair loss, mouth and digestive tract problems, and general fatigue.

This all sounds so glum, but I remain positive in spite of my worn-down body. I optimistically estimate the size of my tumor mass to be about the size of a large grape now.

Epitomizing the Audacity of Hope

Lance Armstrong--the world's greatest cyclist and the world's greatest cancer fundraiser.  He has been a hero of mine for many years.  When you hear President Obama speak of the audacity of hope, picture Lance.

In 1997, Lance's oncologist didn't believe his patient could survive the cancer spread throughout his body. The odds for survival were small.  Prolonged chemotherapy and radiation ravaged his body.  If Lance did survive, it was unlikely he could ride again, certainly not at a

world class level.

After an unprecedented seven consecutive Tour de France victories, one of the greatest stories of our time was written.  The Tour is the most physically demanding of all sporting events.  It covers approximately 2300 miles in three weeks.  The elevation gain during the race is comparable to climbing three Mt. Everests.  Lance retired in 2005 as the greatest Tour rider in history.

Today Lance is riding in the Tour of California preparing for this summer's Tour de France.  Why come back to cycling after four years?  Lance says it is all about cancer awareness.  His

comeback is making headlines and drawing record crowds.  Many of those going out to see Lance are not cycling enthusiasts, but those touched by cancer.

LiveStrong was founded by Lance five years ago to raise money and awareness for cancer.  He dedicated his life to helping others survive cancer.  Lance has already raised over 285 million dollars for cancer research.  He spends much time visiting cancer victims everywhere he travels. There is no individual who has done more to help cancer victims.  

His book, It's Not About the Bike, is a fascinating read about his cancer battle.

A Hole in Time

Chemotherapy is different from anything else I have experienced. In the past, I have had down time following surgeries. There were a few foggy days following the anesthesia and necessary pain medications, but each day there was improvement and after a few days I felt like myself with only some localized pain.

Time moves differently on chemo and it is not always predictable. Yesterday, I had a good night's sleep, but, after only eating breakfast and taking a shower, I went back to sleep for a couple hours. Even when I feel good enough to read, the chemical attack in my body never really lets me feel quite normal.

The next couple days should be my best for a while. I will try to take advantage as I did today when I found time to organize my pictures in Photoshop. On Wednesday, I begin three straight days of chemo I.V. infusions. They will be the strongest so far. For the next six weeks, the cumulative effects of chemo will likely require more down time. Just laying around--a hole in time for me to heal.

There is good news as I gear myself up mentally for the chemical onslaught. My tumor has shrunk to about half its original size. The so-called Meyer lemon size of the tumor is now what I would call walnut size. That's based on non-scientific probing with my hopeful fingers.

Going With The Flow . . .

In the last week, I’ve learned a lot about giving what is needed—as opposed to what I want to give. In other words, it’s not about me. Peter lies curled up on the futon at the moment. exhausted from sitting at the table for lunch. He had some ambitious idea that he would get outside today, but that’s another day, I think.

In the beginning, I would present five options to him – soup, steamed vegetables, pureed vegetables, fruit, chocolate. The sad story is that he seems to have lost his taste for sweets, including (yes!) chocolate. He seems to prefer pizza, not fruit, and calls for water, not juice. If I didn’t know better, I might think he was pregnant!

He knows better than I what he needs and desires. If he says Republican roe, then so be it!
It’s lonesome like this. He’s in his own world, sweet as he is, detached and dreamy. I wander around with so many unfinished sentences inside of me. He can’t tell if his hair is falling out. Most of you know that he’s had a slight head (if any at all) for years. He shaved what he had before his first chemo treatment. Nothing looks any different, although he asks me with regularity if it’s gone.

It’s all in your point of view, I’ve decided. This is my time to get some things done. When it warms up a little, the old dianthus in front of the yurt is coming out to make way for new. The front lawn is coming up, with or without help, and we will inch toward our garden plan. Our environment is beautiful and green at the moment, belying the parched clay of summer here. But that’s months down the road. Mañanaville, my dad used to call it here.

As a Virgo, I’m a manic list maker. I found one recently that Dad had saved from my childhood. It read, “#1) ride bike, #2) wash Beulah (my platinum blonde cocker spaniel), #3) brush Beulah, #4) visit old Mrs. McGillvorie, #5) learn to cook.” Alas, I didn’t get to #5 until Peter and I married, but that dog looked like the Jayne Mansfield of dogs, Mrs. McGillvorie was sublimely happy and my bike wore out the next year.

Looking around the house, I must have found five lists today. Not a one had something that could be done in a day, including #2, written on pink, lined paper—“get Peter up for a ride to Sonoma.” Mañanaville, indeed.

I am looking out the yurt window. Outside, the cool sun has yielded to gray skies, lowering as the frigid wind blows. It was 26 degrees when I got up at 6 a.m. We shivered and drank our coffee hot. I dialed up the heat and heaped a blanket on Peter’s shoulders, and brought his red fleece watch cap to cover his head. Tomorrow morning, I will swim in this weather, which is my only real release. I am so glad I learned to swim! As cold as it will be on the morrow, I will put in on my back and draw my arms and feet in the pattern proscribed. The world will go silent and the flapping flags over the pool will call my name as I think of the one I love—who lives in a world nearly as serene.

Running on Empty

I have been incredibly tired the last few days.  My energy level has made me feel like my Dad and I in this old picture with our dog, Jiggers.  Today, I have a little more energy and am able to read a little and spend some time on the computer.

The medications given with chemo do a great job of preventing pain, nausea, and other undesirous side-effects.  They don't, however, control the fatigue.  I have mostly slept the last couple days.  I get up, have a cup of coffee and by the time I finish a bowl of oatmeal, I am ready to lay down again.  I take a shower, and need another nap.

I have instituted a circuit training program.  I get out of bed, eat, go the recliner, sip tea, lay down on the futon, snack, go back to bed.  Bed, recliner, futon, bed, recliner, futon, repeat.

I will cross my fingers for a good day tomorrow. Wednesday means I get another infusion at the oncology center.  For now, the sun is shining brightly through a rain cleared sky and everything is lovely.  I pick up my book on Zen Buddhism and reflect on the larger things in life. 

Are You Ready to Rumble?

Yesterday, the battle began in my body. The evil forces of lymphoma met head-on with the powerful forces of Nitrogen Mustard, Doxorubicin, Vincristine, Bleomycin, and Neulasta. Along with a larger team of supporting drugs to control side-effects like nausea and reduced numbers of white blood cells, I am marching to victory.

Over the course of two and half hours, various drugs were infused through an IV in my arm, some in bags dripped into the IV and other delivered in syringes by nurses. Nausea was controlled by two bags of anti-nausea medication and a pill that cost $135.00 each. It all worked- it better for that much money! I didn't really feel much until the end of the session when a mild tingling and slight burning sensation moved throughout my veins and arteries. I left feeling a little spaced out, but not really in pain. I didn't feel well at all when we got home and immediately slept for a couple hours. Viola wanted me describe how I felt, but it wasn't easy to put into words. I felt odd; a little like someone had injected Icy-Hot rub into my circulatory system. It was tingling, warm and cool, in my feet, in my hands, and even in my teeth. I had a sweat in bed and experienced fevers and chills later. My body temperature was 96.5. I sat in my recliner covered in a blanket only occasionally able to focus on the TV.

I slept well, but woke at 4:30 am. I feel a little better today. There is a strange metallic taste in my mouth and body feels out of sorts. I am fatigued and a little spacey, but able to read and use the computer. So far, I have been able to eat, although it often driven more by will power than appetite. Having a Jewish mother in the house pretty much guarantees I won't be lacking for food or instructions to eat and drink.

Today, my visit to the oncology center included an injection to stimulate the body to make more white blood cells as the cancer fighting drugs wipe them out. I was told that tomorrow I will begin three to four days of aching joints and some pain in my bones. I try to stay focused on the fact that my cancer is now shrinking instead of growing.

Thanks so much to everyone who sent well wishes. They are truly comforting.

The Night Before

This entry from Viola.

I’m looking across the room at a photograph taken during our first summer. He’s so handsome, smiling his unselfconscious wide smile. I know Alice is taking this picture, as we sit on a bench in Langley, Washington after great plates of Swedish pancakes at the local breakfast joint. It’s before you could tell that she had a rare nerve disease; the camera is steady and trained perfectly on us. I look thinner than I remember, totally infatuated, happy beyond words.
There’s a certain lightness in this photo that I try to recapture as I stare. For a couple of years, Peter and I have felt the weight of all mankind on our shoulders. Deaths, family matters, responsibilities, a new college degree (for him), retirement (for me) a new career (for him) and so much else. I let the image burn itself into my heart. The photo was taken on one of our first excursions, to the Pacific Northwest, where we made love in a log castle in late afternoon sun as the wind whipped across Puget Sound, making the windows rattle.
As I think about tomorrow, the beginning of chemotherapy for Peter, I try to go back, back to that simple time when our lively happiness meant we might hike for the morning, or bend deep in a forest to inspect a tiny fern, or eat sloppily from metal bowls of muscles in a honky tonk close by. We had each seen a lot of sad things before this photo, and yet, we seemed young and untouched. In another photo on this blog, we strike a similar pose at the top of the Eiffel Tower in a drenching, freezing ice storm. Happy as we look then, the cancer was growing in him.
I’ve tried to prepare for his chemo—I’ve made sweeping shopping trips into town for soft foods and a thermometer, selecting hard candy for a bowl by his chair, batteries for emergencies and trash bags and sanitizing products and special soaps. I’ve had blankets cleaned and bought soft sheets for the futon in his office if he decides to sleep there in the afternoons. I’m trying to get into the 20-second hand washing routine before and after I touch him.
I can’t keep my hands off him, of course. It’s like I’m afraid he will suddenly jump on a train to a distant destination, and we will be rudely separated. We know we are lucky and his prognosis is good, but it’s going to be hellish, nonetheless. I watched as he shaved his head in preparation for tomorrow, looking back at me in the mirror as he did. I know that, no matter what we do, we will never be prepared.
The sun is going down and it’s time for me to come in from the yurt. Before I do, I tear my eyes from the photograph and look outside at the beautiful Mayacamas in a strange, fiery dusk. We are lucky in so many ways, I tell myself again. Lucky enough to live in beauty, lucky to have each other. And now, I make my way through the wintery garden to our wonderful, simple home in Kenwood. Night has fallen and the nightingale wails.