Victorious

The doctor says my PET Scan results are inconsistent with the activity level of malignant cells. What does that mean? It appears I have won the battle against cancer. This victory makes that hurdle race I won in high school look insignificant.

Only after getting this fantastic news, did I realize how much underlying tension was associated with the scan results. If the cancer persisted, it would have meant more chemo, more radiation, or both. After coming out the other side of that experience, I really didn't want to re-enter the dark cavern of cancer treatment. My prognosis was good, so the results weren't surprising. Still, an underlying threat that can kill you, creates a great disturbance to one's soul.

Driving home, I felt like I had escaped from a pressure chamber. Life was beautiful again, and never more so when driving through the Sonoma Valley. Drifts of fog were coming over the mountains from the ocean. They wrapped the mountains giving our favorite Hood Mountain a veiled appearance. The setting sun was beginning to create pink and red colors on the top of the fog banks. On Kenwood's Sugarloaf Mountain, a round cloud covered it's peak looking a giant ice cream cone dipped in raspberry sauce. Wonders never cease!

I am not a particularly religious person. Last fall, however, we had a religious experience in the great cathedral in Cologne, Germany. The light passing through the stained glass windows lit sculptures high on towering columns. For centuries, people experienced the same sense of the unexplainable. Hallelujah!

A PET Scan Sounds So Friendly...

Tomorrow morning I will receive my second PET Scan. The first one measured the size and exact location of my tumors. This one will show if the tumors are gone. I'm thinking positively as the thought of more chemo or radiation is too depressing.

I was not really prepared for the length of time my full recovery would take. I don't know if the medical staff hesitates to fully explain this to cancer patients or if it's just that I was always very healthy. Mostly, I feel pretty good, but my body is still battling back. The hair on one side of my chest hasn't starting growing back yet. Viola says it looks a little like Victor/Victoria when I have my shirt off. My mouth burns a little all the time and I wear down by the end of the day. But I am constantly grateful to be alive.

I notice natural beauty more now. Riding home on the bus, I saw the most spectacular cloud formations as we dropped down into Sausalito heading north. There were three distinct layers- a high fog wrapping over the mountains, above it was a layer of clouds that looked like cotton balls, and up high was a wind-blown layer of whispy clouds that looked they had been created by the hand of a Japanese brush painter. I stared in awe at the wonder of weather. What could be better than to simply view this out of the window of my bus? Next to me a young man was glued to his cell phone engaged in an argument over nothing as important as the view out the window. His loud voice really didn't bother me, but I wanted to tell him to turn off his phone and look at what he was missing. You are alive -- appreciate it!

I am still getting a grasp on this huge event in my life. What it means to be a cancer survivor, knowing that each day I enjoy and witness things I might have never experienced.

Walking Ghosts

I love the author John Berger. In his latest book, From A to X, he writes:

It's the small things which frighten us. The immense things, which can kill, make us brave.

Many people say I've been brave. Maybe so, but I was given an immense thing. I look at others going through chemo and radiation and admire their strength and courage. I was initiated into that club and remain a surviving member. It is quite an adventure on a long road. One of the many interesting people I've met during this experience was a woman who often waited in the radiation treatment room with me. She didn't need chemotherapy and had never been to that area of the clinic. She was afraid of the chemo infusion room. "The people there are like walking ghosts" she said.

I felt ghost-like at times. Straddling between two worlds. Lately, I have been gradually re-entering the land of the living each day. Two days ago, I took my first bicycle ride in over six months. It felt great even though I only rode a fraction of the distance I did last summer. Tomorrow morning, our daughter Susanne has invited me on an early morning hike. I work at home tomorrow and hike before work sounds much better than a bus ride. We'll hike the Lawndale trail pictured below.

Everyone says I look great now but I don't always feel that way. My mouth still burns and tastes metallic all the time. It has been nearly two months and the hair on the radiated side of my body still hasn't started growing back. No wonder I get fatigued with my damaged body still actively repairing itself. In two weeks I will receive a PET scan to look for any remnants of the tumors. Six months after that another one to make sure the cancer hasn't returned. I keep my fingers crossed and try to make every day special.

Goodbye Susan!

My friend, Susan , lost her battle with cancer this week. She was always active-- full of life. Twenty years ago, my wife, Barbara, noted amazing similarities between Susan's astrological chart and mine. When Barbara passed away suddenly, Susan was a loyal friend who always made sure I was getting back into living. Perhaps our most unusual intersection in life occurred when Susan was diagnosed with cancer less than a week before I discovered mine. We both had blood cancers, only Susan's was a form of leukemia difficult to treat. As you might imagine, I have been thinking about Susan a lot. Susan accomplished something the rest of us should aspire to: a life well-lived. Her life's book is closed while we still have chapters to write.

Reconnecting

Returning to work last week gave me a feeling of reconnection. I didn't express myself as enthusiastically as the dancers on the wall of the SF Ballet building, but there was an inner joy... just being alive!

I only commute to the office two days a week during my first month back. Nurses thought I was rushing things to return so quickly, but my doctor allowed me to give it a try. I made it through my regular shifts, but was extremely tired at the end of the day. Normally, I read on the bus when not enjoying the beautiful views over the

Golden Gate Bridge and through Marin and Sonoma Counties. This week, my tongue and eyes burned and I was too tired to even bother with my Ipod. Thankfully, Viola chauffered me home from the bus stop. The telecommuting days are much easier, more relaxed, and without the commute. It felt great returning to work--getting out in the world again and feeling productive.

I tried a short walk on my first day back. The California Supreme Courthouse is just a block from my office. It was surrounded by wild crowds reacting to the same sex marriage ruling. How sad and disappointing to deny fellow citizens the right to

marry! On my second commute day, I made it to one my favorite places-- the main San Francisco Library. It surprised me how much that short walk tired me.

Below you can witness my ambition surpassing my ability. Our daughter and grandson, Susanne and Bryce, were actually the ones who moved most of that dirt while I spread it around new raised beds in the garden. The beds are up and the vegetables and herbs are now growing. Another year and another garden. A garden is wonderful statement about life. Always a joy, this year it is something more.

Healing

Here's a question to test your knowledge of trivia: What area of the body tans most rapidly?  Why, of course... it's the axilla, also known as the arm pit.  Now, you're probably wondering the point of this anatomical quiz. Well, after a couple weeks of radiation treatments, I became concerned about a dark brown color in my left axilla.  (Doesn't axilla sound more pleasant and sophisticated than arm pit?)   I worried about the radiation was causing an unusual skin reaction-- perhaps skin cancer.  My radiologist explained the axilla's inhanced ability to tan.  I simply had well-tanned a well tanned area of skin from the radiation.  That later became open sores when it went from a great tan to radiation burns.  Enough said!

Today, my oncologist said I am doing great.  He expects the PET scan in two months to show the cancer gone.  I will see the radiologist on Friday for a follow-up on the reactions to the radiation treatments.  I tire easily, especially in the afternoons. The skin over the radiation treatment area is improving, but still red with some scabs.  It doesn't hurt as much and most of the open sores are gone.  What a relief!  The axilla was probably the worst forcing me to keep my arm away from my side in a basic hokey-pokey position.

I caught a cold last week; most likely from attending our usual Mother's Day Brunch at the Glen Ellen Fire Department.  Normally, I hate summer colds, although they tend to be less severe than the winter versions.  This time, the cold didn't seem that bad.  Having just gone throught chemo and radiation, a cold seemed like such a minor irritation.  Ah, relativity.

Yesterday, I sat outside our local Juice Shack and drank a pineapple smoothie.  I watched people passing by and thought about how different my experience has been the last four months.  The world kept turning, but for me it was as if I had stopped and gotten off for a while.  It is nice to re-entering a more normal experience.  I am ready to get my garden planted and take on the Sonoma trails again.

Blossoming Out

Beauty may only be skin-deep, but radiation cuts to the bone.  My left upper torso is far from beautiful with blotchy redness and small scabs from radiation burns.  The flesh feels like it just came out of a toaster oven--and it is cooked medium-well.

I was told that the worst side effects of radiation would follow the last treatmennt.  An oncology staff member called it "blossoming out."  I like it when my flowers blossom, but this is not fun.  It is painful, and I am incredibly fatigued.  It seemed like such a cheerful day when I rang the bell after my last radiation treatment.  Actually, it was a cheerful day, but there's been a predictable increase in my symptoms following that treatment.

Several times a day, I put aloe vera gel followed by a vaseline-type product called Aquaphor.  It's suppose to help the skin, and it probably does, but the burn effects are still obvious and uncomfortable.  The skin stings with raw patches where the skin has come off, especially in my arm pit.  I try to keep my arm out and away from my body.  I sleep on my right side to avoid putting pressure on the sensitive left side.  I imagine the muscles, lungs, throat tissue, capillaries, etcetera, would all look inflammed if they were visible.

Hopefully, I have stopped "blossoming."  I think I may be a little less fatigued than yesterday, but that may be wishful thinking.  The doctor hopes I will be ready to return to work in about two weeks, so let the healing begin!

Last Radiation Treatment

Here's where I began my daily treatments sessions over the last month:

Passing time...

Radiation beam aligning for treatment.

And now the fun begins...

Remote video observation of the radiation being delivered.

A happy day for staff and patients.

The plaque under the bell reads: 

We join you in joyous celebration of the completion of your treatment session...So ring the bell to say farewell.

Farewell to treatments! The radiation will continue to kill cells in my body for weeks to months.  Next week, my only medical visit will be a blood draw at the lab.  Then two doctors visits, radiologist and oncologist, the following week.

Thanks to Viola for taking the great pictures yesterday and being with me every step of the way.

What a Long, Strange Trip It's Been!

Tomorrow is my last radiation treatment!

I feel like I've been in a small car for seven or eight hours -- and I still have an hour and a half to go. The scenery is no longer interesting. Nobody in the car has anything left to say. I just want to get there and relax...but I'm not there yet. I have to keep driving.

I haven't been posting as frequently and discovered that many of you noticed. I am very tired and obviously, I'm ready to arrive at my destination. While my treatment ends this week, my recovery continues. It will be two and a half months before I can have another PET scan to see if the cancer is gone. It will take that long for the cells damaged by radiation to complete their healing process. The PET scan can't distinguish growing cells, cancerous or not.

It is hard to judge how I feel at this point. I am very tired and my eyes often burn like when I have been over-tired and trying to stay awake. My tongue still hurts,

especially after eating, but I can taste chocolate and I am glad to report it is wonderful. I felt better this past weekend sitting in my easy chair and watching the rain. When the sun is out, I want to garden but don't have the energy to do it for long. I break into a sweat easily when it seems as if I haven't really done much of anything.

The assaults on my body will soon cease and I can begin to heal this battered body. I now practice my guitar for a few minutes a day. Practice will build the calluses on my fingertips again, and time and activity will strenghten my back muscles to garden. In a few weeks, my leg muscles will be ready to take on the hills of San Francisco. Just the other day, I realized that I will ride a bicycle again soon, a thought that sent my spirits soaring.

In the meantime, the moody weather suits me just fine. I have time to think about living again--and I can't wait for it to be effortless.

Another Day, Another Dose

During the initial part of my radiation series, I began to put some normalcy back into my life. I drove a car again, visited the local library, and had lunch at our local Cafe Citti.  Viola and I visited the nearby Quarry Hill Botanical Garden. Walking around forty acres of rare and endangered Asian plants felt great, even if it did wear me out. We sat by some Tibetan prayer flags looking out at our valley and feeling grateful at being alive.

Now, after two weeks of radiation, I am beginning to feel more fatigue.  There is a sunburned feeling on my left upper body that includes both on the skin and deep in the tissues.  The effects of radiation are cumulative and what I am feeling is to be expected.  My radiologist wants me to wait at least two to three weeks after my last dose before returning to work.  Another month of feeling tired, sore, and basically lousy. So far, I am lucky that frequent applications of Aquaphor, a vaseline-like skin lotion, have keptmy skin in pretty good shape- just a blush of color.

This weekend our daughter, Zoe, visited with granddaughter, Teagan.  Now that's a way to cheer up a tired guy.

Hit Me With Your Best Shot...

I have begun radiation therapy.  "Fire Away!" as Pat Benatar sang.

Radiation therapy kills cancer cells and stops them from spreading using high doses of radiation.  My chemotherapy eliminated the tumor, but there may still be some remaining cancer cells.  The radiation will destroy any remaining cancer cells and reduce the chances of the lymphoma returning.

The radiation is a very precise procedure. A body cast was made for my head and left upper body.  I lay in the cast to position my body correctly each time and to help me remain still.  My treatment area includes both the site of the tumor as well as the lymph node chain above it.  In the photo you see a red outline done with a permanent marker (my tatoos are so small they are barely visible).  Because my cancer was Stage 1, only this one area receives the radiation dose.

The treatment itself only takes about 20 seconds to the front of my body. 

The machine then rotates 180 degrees and I receive the same dosage to the back my body. Most of the treatment time is spent carefully aligning the radiation beam. In the photo you can see red light beams from the lasers used to make the precise alignment. I will receive radiation five days a week for four weeks.

Side effects of radiation vary with the area treated and vary from individual to another.  In my case, I was told to expect fatigue, hair loss, skin changes similar to a sun burn, and some irritation on the left side of my throat.

So far, radiation is not as bad as chemotherapy.  The treatment area feels a little swollen after therapy and feels like mild sunburn.  I am experiencing fatigue, but able to get out in the yard and enjoy Spring in Kenwood.  The radiation effects tend to become more prominent after a couple weeks.  Keep those positive thoughts coming my way for mild side effects and a quick recovery.

Thank you for letting me, be myself, Again!

I want to thank everyone for helping me along my journey so far.  As Sly and the Family Stone sang, "Thank you, for lettin' me, be myself, again!"  

Your cards, emails, phone calls, flowers, casseroles, pies, cakes, cookies, CDs, books, prayers, chants, and positive vibes have kept me going through tough times.  It seemed that every time I would start to feel depressed, someone would make contact and cheer me up.  I feel very humbled by the many, many acts of love and caring.  Knowing you are surrounded by love is more comforting than I can adequately describe.

Most deserving of my appreciation is Viola.  She is the who held me tight and stayed strong in those scary weeks last January when we awaited the diagnosis of the mysterious lump.  She's kept fresh flowers in our home, helped me bathe and get dressed, covered me with blankets and propped me up with pillows. She has fed me so well that I gained a couple pounds instead of losing weight, both surprising and pleasing the oncology staff.  It is hard to imagine getting through the past couple months without her.

V and I look forward to seeing all our friends and family again.  Happy together, like that day pictured below, celebrating our tenth anniversary last fall-- travelling by train from London to Paris and returning to Monet's garden where were married.

Not that too!

I received some disturbing information at my radiation education session.  I was prepared to hear about the side effects, such as burning of the skin and fatigue.  I learned that I will get some scarring in my lungs and possibly in my throat.  But nothing prepared me for the news that I would lose my chest hair.  "Not that too!", I cried.

There is only so much a man can take and I so I began googling chest hair loss.  Much to my relief, there are solutions for this most embarassing of problems. 

Yes, you probably recognize it, an actual Austin Power's chest hair piece for only $19.95.

An even simpler solution is a shirt I can wear on those hot days of summer when I want a natural look.

Should my deepest fear be realized and my chest hair fails to grow back, there are the Japanese chest hair implant clinics.

My google search even lead me to a mystery that my new specialized knowledge solved.  I know there is no mystery in the article below, it is simply one of the side effects of chest radiation.

It's Getting Better All the Time!

Good news today at the oncology center! My doctor cannot feel any evidence of the tumor.  He will not order a diagnostic scan now since any remaining cancer cells should be eliminated by the radiation treatments.  My lymphocytes are back to normal and I can discontinue the support medications I was taking three times daily.  I can go out in public shaking hands and kissing babies.  I can eat popcorn now without the risk of mouth sores, but it will be hard to enjoy until butter tastes like butter again.

One of the best things about today--I got the PICC line removed! I couldn't look as they pulled the twenty inch catheter out through my biceps muscle.  It is such a relief not worrying about lifting my arm too high or snagging the tubes dangling out of my arm.  If this sounds too graphic, be grateful I haven't posted pictures!

And there was more good news about my arm with the blood clot. It is no longer painful and the doctor will reduce my intake of anti-coagulants from six months to three months.  I also get to reduce my visits to the lab for blood draws from once a week to twice per month.  I asked the doctor if I would be able to do one arm push-ups when the treatment is over.  He said "Sure".  I said that's great because I never could before.

I Can See Clearly Now

The last chemo infusion was nine days ago and the drugs are slowly wearing off. Like the planet in springtime, I am coming alive again-- more energy, more mental focus, more taste sensations...I am starting to feel more like me.  It is truly as if a haze were lifting and everything is becoming clear.  I'm as happy as an onion flower bursting from its sheath.

Today I tended to the grape vines, tying up new canes and making a few more pruning cuts on the old vines.  The photo shows me learning about grapes from the 95 year old master gardener and my father-in-law, Glen Smith.

I had a CT scan this week and found out it was only for measuring purposes and not to diagnose the cancer.   I was very surprised when the technician said she was going to tatoo me.  I thought she was kidding, but no, I got three permanent dots tatooed on my body.  These will serve as reference points to align the radiation beams.  And I can now proudly proclaim in any bar, " Yeah, I got three tats!" (Apologies to cousin Denton Toddhunter, renowned tatoo artist.)

Monday morning it will be lab tests and a visit with the oncology doctor.  He will most likely order a diagnostic scan to search for a hopefully non-existent tumor. 

Lunch today with two great friends from Sacramento, Anita and Larry Fein, made my life seem almost normal.  We sat outdoors in beautiful weather eating simple Italian food at our local restaurant, Cafe Citti.

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

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Young, redheaded V (by Kim Scott) in hallway

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Antique rocker on Ironwood floor

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Little Red

Fireplace sconce in living room

Quan Yin and flowers