My husband was jumping up and down with joy when my acceptance letter came in the mail Saturday. I’d been “approved” . . . Green lit . . . Fast forwarded . . . First in line . . . to a Social Security Disability. Why wasn’t I excited? After pondering a deep set depression I realized the answer. The government stamped my cancer as “or will end in death” . . . It is one thing to walk the path of a cancer diagnosis without a cure . .. It is another to put a neon light on the trail . . . Can we use the checks? Absolutely. Have my work hours dwindled down to only a few paid jobs a week. Yes. Is it worth the psychological price? I’ll need to give this concept more time to settle in.

Posted in Uncategorized | 1 Comment

Stage IV “Incurable”

It was my fault.  I asked.  Dear Dr. Heinrich, “What is my official cancer diagnosis?”  The reply is my heading . . . I could have not asked and maybe held a little more hope.  I push researchers and I didn’t want to say, “Hey, over here, yeah, me, I’m a stage IV cancer patient do you think you could hurry your research up a little if I donated some tumor tissue to your research center?”  The media headlines, “Miraculous Cancer Cure” yet each and every treatment so far won’t help with my type of tumors . . .

I do have despondent days but those lately have been a brain chemistry imbalance and not emotionally triggered.

And yet, the roadblocks I’m constantly having to maneuver around, can at this point be dealt with.  It is a place where “wants” doesn’t exist only “needs” are considered.  Fantasy is replaced by reality.  I plan mind games with “wouldn’t it be nice to go to a tropical island” only to realize I’d have to take this body with me. Daily desires are filtered down to  a “cup of herbal tea” and “walk in the park.”.  I’ve learned on “bad days” I can’t mingle with “polite society”.  I learned that last week when a sad mood took over and I thought granddaughter could cheer me up.  Instead she ran to her mother.  She later said, “I was scared, I’ve never seen grandmother so sad.”

Thus a delicate balancing act between functioning, staying positive and learning how to deal with what I’ve been given in the most gracious way I can.

Posted in Uncategorized | 1 Comment

I always thought I’d travel more

I was fortunate as a child to have travelled to Europe with my family for six weeks when I was 8 years old.  Walt Disney had died that year and Disney Studios wanted to show the world the studio was alive and well.  My father was in charge of foreign relations and a business trip to promote the to be released movie “Jungle Book” was arranged by the studio that included mom and us kids as mini ambassadors. We stayed at High End hotels where my breakfast tea and came with a whole tea pot to take me from “pretend tea parties” to real ones.  We toured the Steiff Stuffed animals factory where dad needed to sign off on the Baloo the Bear and Kaa prototypes that would accompany the movie.  We visited Embassies where the movie “Jungle Book” was screened and we got to eat American hamburgers.

I always thought I’d travel in life.   In college I spent 9 months in Europe.  First in studies in Florence and London and the summer working in a pub in Wales.  The Welsh men would tease me by ordering drinks in Welsh and I had to do the math of pounds to dollars back to shillings.  The patrons would say “And one for you lass” and these pints added up in a night until I’d have to crawl the four flights to the small bed I had for lodging in the attic.

Then I married a musician and all travel involved what gigs we could book.  Brian would perform at small clubs and restaurants in exchange for dinner, tips and a floor for us to sleep on.  We’d get to the beach.  The Oregon coast is gorgeous. Then children came and travel got complicated financially and linguistically.  Would our one year old cry throughout the concert or sleep peacefully under the light table?  We had experiences of both.

Maybe, marrying a musician and being on a tight budget saved me.  As years rolled by travel eluded us.  What monies I could save up went to visit my mother on Molokai which happened 3 times in 25 years.  I couldn’t afford to take both children so it was my daughter who went with me.  She loved the long white empty beaches and slashing in the warm water ocean as much as I did.  My son never met my mother.

What I learned yesterday could be an important lesson between desire and reality.  There is some solid research that says states of hypoxia (lack of oxygen) promotes tumor growth. The researcher who discovered this, Dr. Baysal, states those living in high altitudes with my gene mutation, SDHB, part of the TCA (Kreb’s Cycle) are at risk for developing tumors.  Tumors can’t grow if oxygen is present.  Prolonged lack of oxygen allows tumor growth.  I asked him if this could also include flying?  He thinks definitely.  Those years I wanted to travel and couldn’t might have saved tumor growth until my fifties.  Did that long saved up for trip to Scotland and Paris for our 25th wedding anniversary trigger the spark?  I had cancer symptoms on that trip I didn’t know were cancer at the time.

Did dad travelling around the world for Disney throughout the 1960s spur his tumors on?

I can only speculate.



Posted in Uncategorized | Leave a comment

Stay out of corners

Depression lurks in every corner when one has cancer. I try to stay in the middle of the room where it can’t reach me. It doesn’t take much to be edged into the shadows. The usual triggers are an upset stomach, headache, wondering will I ever feel well again? Then I remember the book on optimism I read saying find the positive. I picture granddaugther laughing on the swing yesterday. This backyard swing has an old rope attached to a limb of a walnut tree. The rope is so old the tree has wrapped itsbark around the original loop. Then granddaughter wants off the swing to help Grandpa sweep the fallen leaves into a corner . . . And I remember how I have to stay out of corners.

There are the daily physical symptoms and then the harder long range reality. I already have more tumors. I will always have tumors. I have to mentally plan for another surgery when the last scars as still healing. There is no doctor who can answer why the tumors keep returning. I spend days upon days trying to find that needle in the haystack myself. I read hundreds of research papesr only to conclude “no one knows.”

The world seems noisier and more crowded when you live with limited energy. Cars seem to drive too fast. The leaf blowers are everywhere.

I crawl back under the covers for the sixth time today. Hoping a nap will give me an escape from the nausea. A cat joins me and whacks me with a claw when the nap doesn’t happen and I get up again. Try to be productive when there is nothing inspiring me to do so. What’s the reward? Another week’s stay in the hospital?

Then granddaugther drops by for a visit and “Living in the moment” becomes easy. She’s constantly moving from book to puzzle to ho,p stomp and spin. Her giggles spur the twirling faster and faster, “We all fall down.”

Posted in Uncategorized | 2 Comments

Fresh off the press . . . New song written by Brian Freeman during a walk in the rain last week while pondering a silent cancer . . . This speaks to more than just my condition.  MP3 version to come.

Silent Song

Waiting for the revelation that may never come

Listening to the explanation told with tangled tongues

Waiting for the day I’m told there’s no more to be done

Waiting is my last horse in the race that I can run

Every hand that I am dealt I have to fold once more

Every time I hear a knock there’s no one at the door

Special is a word that I’m beginning to despise

Special isolates you from your ordinary life

Who hears the scream that make no sound

So few can hear this silent song

Somewhere is the key that’s locked behind an unseen door

Somewhere is the balm to soothe a battered, beaten soul

Time is always running never pausing for one breath

Leaving me behind to try to catch up with the rest

One moment there is sunshine then a fog too thick to tell

If I am walking in this world or crossing into hell

Adding pieces to the puzzle, no more in the box

The picture will not come together, far too many lost

Who hears the screams that make no sound

So few can hear this silent song

Waiting for the revelation that may never come

Listening to the explanation told with tangled tongues

Waiting for the day when there is no more be done

Strangers fight inside me when they’re silent I have won

Who hears my scream that make no sound

So few can hear this silent song

Who hears my screams that make no sound

Posted in Uncategorized | 3 Comments