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Stephanie Sugars
Welcome, dear friends and guests!
Important Traffic Information for the day of Stephanie's Memorial

Dear Friends,

Just a reminder that Stephanie’s Memorial is on Saturday, April 22. The original post on March 15 with the link to Eventbrite is below in case you haven’t yet sent in your RSVP or if you want to know the details of the memorial again. (Please RSVP right away if you haven’t yet so we know how many people to expect.)

We also wanted to let you know that the Sebastopol Apple Blossom Festival is the weekend of Stephanie’s memorial, April 22 & 23. Sebastopol will be crazy traffic congested – especially on Saturday for the parade.

For those of us who are coming to the Stepha

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, Elinor, and Sandy

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SS

Well, hell!
Dear loved ones,

Had a lovely day with my sister and neice. Not so lovely news from the doctors though.

Saw the pulmonologist today. He says the effusion is back and there's now about a liter around my left lung. Had 800 ML drained two weeks ago. It's come back faster this time.

Will have a CT scan tomorrow, Friday, to find out if the effusion is complicated by pulmonary embolism and/or diffuse lung mets. 

If "only" effusion, he wants me to have a pleuradeisis procedure, aka talc around the lung, soon. It's an inpatient surgical procedure requiring general anesthesia and several days in hospi







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A child with PJS

The isolation and loneliness of living with an orphan disorder can compound suffering.

The affected children and their parents re-connect me with my purpose.

Their empowerment through information and support brings great inner joy!

And email connections with affected adults have added more brothers and sisters, nephews and neices to my other family life.






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My other family

Photo of me as young adult - check out those freckled lips, they're a family trait of my other family
xoxoxox 

As a child, I loved stories of lost children finding their true families. I wasn’t an orphan, am the oldest of six siblings in a large, extended family. But I felt different. It wasn’t just being the only blond or an enneagram four. I seemed to have a different experience of the world.

I didn’t know then that the freckles on my lips and the scar on my belly were signs of a rare genetic disorder, Peutz-Jeghers syndrome (PJS). Or that recurring abdominal pain and y



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Social Support and Circle of Care

One of the overlooked benefits of being a long-term patient is meeting literally hundreds of other patients and becoming familiar with their inner and outer lives. My additional years as a volunteer hospital chaplain and founder of an online support group for people with a rare genetic disorder have taught me much about the importance of social support.

When speaking with others I’ll ask about their inner and outer resources – What keeps you going? Who’s there for you? What do you envision for your future? How are the caregivers being cared for?

These are fundamental concerns

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Iscador, anthroposophic medicine and me

Before and after photos

Top: 1996 – I failed chemo, photo with sisters Karen and Jenifer
Bottom: 1997 – At Lukas Klinik in Switzerland with Bridget & Shannon

 Dear loved ones,

I owe a great debt to Rudolf Steiner and his contributions to modern medicine – specifically Iscador and anthroposophic medicine. Since it’s largely unknown in even the alternative medicine circles, I want to describe some of my experience in this blog post. 

Back in mid-1996, I hit the wall in cancer treatment. After my diagnosis in 1991 and first recurrence a few months later, I’d engaged a varie



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Recurring themes in conversation

 What is more precious than gold? Light.
What is more precious than light? Conversation.

            - Goethe in Green Snake and Beautiful Lily

Dear loved ones,

As I mentioned in my previous posts, one of my greatest joys is sharing as many good times with as many of you as possible. And, since I’m a Gemini and an anthroposophist, one of my greatest joys is conversation.

Fortunately you are pure gold, enlightening beings, so sharing conversation with you is sublime.

In our conversations, I’ve noticed several recurring theme


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Pink is a 4-letter word

Dear loved ones, 

Let’s spare us all some embarrassment.  Please don’t PINK me.  No ribbons, t-shirts, cards, KFC.

Please don’t try to put a happy glow on what has been my 20+ year run with advanced cancer.

I just won’t buy it.

And you shouldn’t either.

We can find other ways to be loving and supportive of one another.

And we don’t need to rely upon strange stereotypes to do it!

Here are some of my sheroes :
Pink Ribbons, Inc. film trailer & excerpts
http://www.nfb.ca/film/pink_ribbons_inc_clip/

Gayle Sulik’s tribute to Rachel of The C



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What's up?
My cancer tumor markers are up. So is the burden of disease around my left lung.

What's down? Last week 800 ML of malignant pleural effusion (fluid) was drained from my lung. Unfortunately, if my new anti-hormonal medication doesn't work, it's likely to recur in shorter and shorter intervals. And I'll be looking at the end of life in this body within the year.

While I've been dealing with cancer for many years, this turn of the past six months seems more ominous. Or certainly, more uncertain.

In spring of 2011 I entered palliative care to help with pain and other symptoms. But, more importa





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