I want chocolate to taste sweet again...

It's been five days since my last drug infusion and I am beginning to slowly come out of my chemo haze.  After a lab test today, V and I went to a nearby library where I checked out two books.  How's that for optimism for my attention and focus to return soon?

I have been reflecting on what is important to me at this point in my life.  

I want:  chocolate to taste sweet again;  sunshine on my body; to eat popcorn without worrying about mouth sores; a digestive tract that doesn't constantly remind me of its existence; great writers to inspire me, not tire me; to feel hunger for food; a week without lab tests; to raise my arm without fear of dislocating a catheter; to put my hands in the dirt of my garden; to play guitar without infecting my fingers; I want a kiss from my baby granddaughter; to enjoy being touched again; to hold my wife tightly; to walk, hike and cycle; to chop vegetables; to be in the company of friends...

The above thoughts are taken from a list I composed one day.  As I read over the list now, I see how simple and basic my desires have become.  There is a Zen Buddhist concept of becoming more intimate with life.  After having so much taken away by chemo, it is easier to appreciate this.  For the rest of you, however, I recommend meditation over chemotherapy for an increased appreciation of the simple things in life.

This, from Viola, the opposite of bad walls

I Will Not Miss These Bad Walls


With this terrible vinyl paper
Spread lumpy, deteriorated
Made to look like a formic potato
Without the benefit of starch
Impossible to lean on, punitive
With patterns of angry insects

I will not miss the jigsaw puzzle
With the missing pieces, spread
Like a rash across a tiny table
Irises done over and over then put away
Forgotten and pulled out of the drawer
I will not bear it anymore

I will not miss the silent way
The waif janitress hangs
Her enormous arachnid head
With those heroin varicose legs
And arms, a chicken rib’s width
I will not miss the idle chatter
Of lazy secretaries who ignore the sick

Or the tardiness of doctors
Or the crate of pills to sort
Some days more accurately than others
I will not miss the questions unanswered
Or the gripping fear of earthly loss
Or the brave bluing that fails to brighten

They say this is a place of healing
Better put, this is a place where parts
Are lost and scars cultivate and lumpy
Tumors grow, are poisoned and retreat
It is a sarcophagus shellacked with toxins
Some will live and some will go so quickly

I will not miss the fine fuzz
Of lost hair, the soft stubble of grief
The maddening passivity of defeat in some
The trouncing determination of others
And always, the cheerful face I can’t wait
To peel like an orange so I am real as before

I will be happy to reclaim my love
And his joyful, change-jangling electricity –
How his eyes shine with discoveries
I wait eagerly for the first laugh
That will erupt like a mud pot bubble
The way he heaves with a silent grin

I look forward to the reanimation
The warming of limbs, the settling
Of his filmy digestion, the retreat
Of his haze, O soon, please, his first morning
When we really know we are the lucky ones
The first flinging of his arms around me

I will wash him again, without the tubes
I will love him delicately until exuberance
Tingles and a heartbeat samba begins again
With a flourish, I will show him the tiny bird
In the new red maple tree, the patient bird
Who waited all this time for spring

© 2009 Viola Weinberg

Finishing Chemo

Yesterday I was infused with my last dose of the chemotherapy toxins.  Finishing--what a great feeling!  I was reminded of finishing races in High School, when I ran the hurdles.  You give it every thing you have and gut it out to reach the finish line.

The next few days will still be challenging as the effects of the chemo take full effect.  Last weekend was my worst for nausea, fatigue, and generally feeling like hell.  The cancer fighting chemicals have a cumulative effect.  Each day is unpredictable. While the side effects will increase for a few days, everyday now I will have less toxins in my body.

On April 7th, I will have a CT scan to determine if any of the tumor remains.  If not, I will move to radiation therapy.  Should some of the tumor remain, I may need more chemo.  Keep your fingers crossed with me on that one.  Following chemo, I will have a couple weeks off prior to radiation to allow my body to repair.

The sun is shining today in beautiful Kenwood.  The irises are swelling; getting ready to bloom again.  I am getting very anxious to get out and work in the yard.  Next week that should become a reality.  Gardening is one of the most enjoyable and relaxing things I do.  One of the best ways to balance the barrage of daily stresses. 

Bar None

My doctor thinks I may have made medical history.  On my left index finger, I developed a series of tender raised bumps. They were red, oblong ridges which appear to be infected.  He looked at my other fingers and found no other problems.  He considered the joints, but the inflammed spots didn't conincide directly with my knuckles.

The doctor examined some medical books and found images of raised ridges, but none that really fit my condition. He even dug into his library of antiquarian medical books and looked for descriptions that might fit.

Finally, as you may have surmised from the photo,  I mentioned that I had been playing guitar about a week earlier for an hour.  He asked which hand I used on the fretboard.  Then it dawned on me!  My right index finger presses across the strings when I play a bar chord (as shown).  The inflammed ridges on my index finger fit the pattern of the guitar strings.  Mystery solved!  Unfortunately, this means no guitar playing for some time. 

So it's true -- music really IS infectious--in this case, not necessarily in a good way.  I wonder - has anyone else suffered fret finger infections during chemotherapy?  My research found no other cases!

Daffodil Day

Yesterday I was greeted at the oncology center by two volunteers from the American Cancer Society who handed me a bouquet of daffodils.  How uplifting it was to carry my flowers into the infusion room.  I looked around at my fellow travelers on the chemo path, each with their bouquets, and shed a tear.

The Society notes:

As the first flower of spring, the daffodil is a symbol of hope. To the American Cancer Society, it represents the hope we all share for a future where cancer is no longer a life-threatening disease. 

Beauty in Unlikely Places Gallery

I was feeling an urge to do something creative. Unable to play my guitar and not focused enough to tackle creative writing, I turned to photography of everyday subjects in our home. Enjoy!

Why not?


A gathering in the China cabinet


Modern art fly swatter on porch

Mournful coyote eyes - detail of Neal Crosbie oil painting

.

Young, redheaded V (by Kim Scott) in hallway

.

Antique rocker on Ironwood floor

.

Little Red

Fireplace sconce in living room

Quan Yin and flowers

and the Bleo goes to...Peter Spencer!

Bleomycin is the primary cancer fighting drug I received this week.  The nurses refer to it as "Bleo".  That has a friendly sound--like an award one might receive rather than the nickname for a dangerous chemical agent.  Bleomycin is a fierce killer of cancer invaders.  Unfortunately, it kills with reckless abandon and many of the innocent cells in my body suffer the same fate as the cancer cells.  My mouth is often the most bothersome.  It feels like it's coated with aluminum flavored Pepto Bismo.

The blood clot in my right arm continues to be very painful.  Normally, I tend to avoid pain pills, but I'm forced to take Vicodin now.  It was very disappointing to learn the blood clot may take up to six months to resolve.  It seems cruel to get a blood clot on top of chemotherapy.  I read that only 1-2 percent of chemo patients develop clots, but that didn't make me feel much better.  C'est la vie!

While not getting out much these days, I look for beauty in small things.  The other night I took these pictures of tulip shadows while sitting at our dinner table.  The tulips are beautiful, to be sure, but the shadows are beautiful in quite another way.  My life feels a little like a shadow land these days; like Peter is somewhere else and only a shadow remains.  I know I will blossom and glow again like the bright tulips that made these wistful shadows.

For those who are following the food descriptors of my tumor, it is now the size of a small bean.  Yes, the dreaded chemicals have nearly erased the cancer in my body.  Two more weeks of chemotherapy and then a CT scan on April 8th to confirm that the cancer is gone.

Clots, and Shots, and Picc Lines...OH MY!

While not as scary as lions, tigers, and bears, the clots, shots, and PICC line have made the last few days harrowing.

A week after taking antibiotics for plebitis in my arm, there was no improvement.  In fact, the arm was getting more and more painful.  My oncologist ordered an ultrasound scan which uncovered blood clots in my right arm.  The clot was restricting blood flow resulting in swelling and inflammation.  The clotting was caused by the damage to the walls of the veins from the harsh drugs being infused into it.

Later that same day, I was sent to the hospital to have a PICC line inserted.  It is a catheter put in my arm and threaded into a large vein in my chest.  This way the chemotherapy won't blow out my other arm.  The chemicals feed throught two plastic ports sticking out of my arm and flow directly into a large vein where the toxins are more diluted.  The line in my arm doesn't hurt, but it sure is creepy.  At least I don't have to get stuck with needles as much.

Unfortunately, I do need to have daily injections of an anti-coagulants for five days.  Then I take Cumaden, for a month which will require twice per week lab tests.  For nine days in a row, I will be seeing nurses, doctors, or lab techs.  I am getting use to needle poke in the arm, but still hate having some injections given over my stomach. 

I have really been hit hard by the heavy dose of chemicals this week.  I have been doing little more than sleeping.  My entire digestive tract feels like it's in turmoil.  When I eat something, I can feel my stomach trying to reject it while the strong anti-nausea medications stop the stomach from rejecting the food.  A battle begins everytime I eat.  Consequently, I get very tired after eating only a small amount.  I feel like one of the Iron Man contestants who has collapsed at the finish line.

  

My head is so foggy, that I woke up last night wondering about a strange sound I heard. Viola said the sound was my own moaning in my sleep.  My picture of San Francisco on a foggy day is as vague as my brain right now.

The Perfect Lesson

My phlebitis pain in the right arm was feeling better two days ago and I picked up my guitar for a little relaxation. Beginning a study of the guitar later in life has been a challenging pleasure. It seems odd that all that frustration with finger dexterity could bring relaxation, but it works. The most fun I have with the guitar is playing for the young grandkids who are mesmerized by its sounds.

What seemed like a reasonable idea turned out to be a mistake. Upon awakening the next morning, my pain had returned in the arm with a vengence. Back to doubling down on Vicodin. It was raining yesterday and that made it feel okay to lounge around doing next to nothing.

Of course, doing next to nothing has become my modus operandi. It is strange to take several months out of one's life resigned to doing nothing. Even after previous arm and knee surgeries, I was increasing activities after a week or two. Now my life is somewhat a prolonged Buddhist meditation. A lot of sitting and breathing with a floating mind.

This is a huge event in my life; one that comes with months free to observe and experience it. It is many things: a lethal disease without modern treatment; science saving my life; the initial pre-diagnosis fears of my mortality; struggles with body ravaging treatments; a hope for a complete cure. In a few months I fully expect to be moving on with life cancer free. I know I am learning a lot from this experience, much of which will only become clear as time passes.