Saturday, February 28, 2009

Unexpected gifts

"Has it ocurred to you
that what feels like calamity
may be a gift,
given to you
because you are the rare being
who can use a hard gift like this?
Dr. Hallowell to Hillary Stevens
Mrs. Stevens Hears The Mermaids Singing
May Sarton

Thursday, February 26, 2009

The not-so-strange case of treatment worse than dis-ease

This is a common case of the treatment being worse than the symptoms that required medication. Not so mysterious, right. But I tell you this week has been the one from hell: frustrating, expensive, and just plan awful.

It started with a urinary tract infection (UTI), the second in two months. This one more severe than the first but while both had sudden onsets, this one brought teeth chattering, bone clattering, shaking chills and a rapidly spiked fever that started about 7pm would not and did not come down for nearly 12 hours. It spiked quickly, staying at 102.5 while I huddled under blankets, a quilt, a down comforter and a heating pad in a long thick flannel night gown.

The next day I saw my primary care physician; she prescribed
cipro for the UTI clearly bringing out bigger guns this time.

After just one dose on Tuesday night, I awoke on Wednesday with petechiae. But was told not to worry about it because it was
"a localized reaction". OK, I thought, I can live with this......until the next phase began with unspeakable abdominal pain, nausea and vomiting -- at night. Only at night.

My first UTI was in December. At that time, my primary care physician said she was suspicious that the chlordiazepoxide-clidinium prescribed by my gastroenterologist might be the culprit. It has a known side effect for urine retention. A nice cozy environment for bacterial growth. We didn't make any changes then: perhaps it was coincidental. Kind of watch and wait. I'm good with that. I've been doing for three years for CLL.

But looking back over the week, I was kept awake by fever and chills, by indigestion, abdominal pain, nausea and vomiting every night.
Now, I am sick, I am tired, angry, frustrated.

Here's the thing. To be prescribed cipro to treat a UTI caused by chlordiazepoxide-clidinium prescribed for severe abdominal pain and then have abdominal pain, indigestion, nausea and vomiting from the cipro is a lot crazy-making. And there's more: cipro has other side effects like: vasculitis and mouth ulcers (Behcets symptoms for which I take prednisone, colchicine and budesonide.
But there's even more: cipro also depresses bone marrow, lowers hematocrit and hemoglobin. I am Coombs Positive for autoimmune hemolytic anemia (AIHA); have had one severe bout for which I was hospitalized and transfused). And, cipro is known to cause tendon ruptures. The risk factors are: people over 60 years who take corticosteroids. I am in that age range........I take prednisone......

Wheeeeeee. This feels like a roller coaster ride?
Or a day in the fun house.
But in reality it is a big expensive, frustrating round of illness, prescriptions that cause new illnesses needing new prescriptions to treat the -- well, you know more & more & more & more.
I know I am not the only one whose been on this roller coaster ride. Check the link out for a dandy little poem that tells the same story I'm telling but in an amusing-sort-of-way. I just don't feel amusing. I need to rant.

I want to rant. I also need to lay this experience out as objectively as I can to be sure that (1) I'm not crazy and (2) this really is happening in the way I think it is. Am I done ranting ........ I am. But I don't know that I feel any better.

Today I am reviewing the list of poisons that I ingest every day. So that I can have a normal, regular life. Regulate by body's dys-regulated immune system. Keep fatigue from putting me down for days at a time; keep mouth ulcers/lesions at bay and allow me to eat, talk, work -- brush my teeth (small enough request, I think); prevent severe abdominal pain, and run-away-every-day-diarhea from Behcets. That list of toxic junk worries me -- although it used to be longer still! With even higher doses.

So, I'm not unmindful of how fortunate I am. I know there are people who are really sick. Who have really aggressive CLL and Behcets that moves to the lungs, the neurological system, the eyes.
I don't mean to complain.
I don't think I'm a whiner.

But I am angry and I'm wondering if this is the only way out or around this ??????? mess ??????

Monday, February 23, 2009


I work at the Monarch School of New England, a private nonprofit school for children with severe disabilities -- children who are medically fragile.

Every child there is special -- special in that they are loved fully and without reserve by their families and the staff at the school.

Perhaps one shouldn't have 'favorites' in such an environment. But there are some children who touch your hearts in unexpected ways. One child, Brandon, was one of my special favorites. Well, truth to tell, Brandon was everyone's favorite.

When he was born, doctors said he may not live long, maybe just a few years. But he was strong and loved. And had a will to live that gave him 8 years of love and life.

His mother said of him that "when he smiles, the whole world smiles".

ROCHESTER ; Brandon Michael McKeown, 8, passed away Thursday, Feb. 19, 2009 at Frisbie Memorial Hospital following a challenging yet full life with Lissencephaly. Born Sept. 12, 2000 in Exeter, N.H., he was the son of Brian and Billie-Jo (Haycock) McKeown. Brandon attended the Monarch School of New England in Rochester. He enjoyed spending time with his friends at school, taking long walks with his family, cuddling, and weekends at Nonna's. Members of his family include his parents, Brian and Billie-Jo Mckeown of Rochester; brother, Brett McKeown of Rochester; paternal grandparents, Joanne "Nonna" Riggio of Rochester, and Raymond McKeown Jr. of Dover; maternal grandmother, Dinah "Nunny" Haycock of Epsom; aunts and uncles, Raymond and Amanda McKeown of Rochester, Grace Cromleholme, of Rochester, Tina Haycock of Epsom, and David Haycock of Farmington; cousins, Jaiden Hayes of Dover, Sasha and Ana Bounchanh and Maxi Velasquez all of Northwood. Family and friends may call Monday, Feb. 23 from 6 p.m. to 8 p.m. at the R. M. Edgerly and Son Funeral Home. 86 S. Main St. Rochester. Brandon's family encourages everyone to come in casual and comfortable attire. A funeral service will be held Tuesday at 11 a.m. in the chapel of the funeral home. Burial will take place in the spring. In lieu of flowers, donations may be made in Brandon's memory to the Monarch School of New England, PO Box 1921, Rochester, NH, 03866.

Wednesday, February 18, 2009

She touched my heart unexpectedly

This is a story about knitting and the desire to re-live ancient crafts just for love. Only love. A love story in the very best sense of the word. One with unexpected layers, meaning and depth.

The story starts late one evening, while I was checking email, some favorite blogs and the CLL boards one last time before going bed with a book. But the appeal of the internet and its compelling visuals held me -- led me from portal to portal to the next and the next and the next.

(I'am a new knitter; so it was knitting that caught my attention in those late night hours discovering other knitters, designers, suppliers and dreaming of things I'll make one day).

Anyway, in that late night march through the ether of the internet, I came to blog called Spiffy Knits and stayed awhile, captivated by writer, a former-editor-turned stay-at-home- mom in central Massachusetts. I liked her style, immediately; it was home-y, straight-forward, no-nonsense. I like the way she wrote about her life, her children, her husband (whom she referred to as , well you guessed it, "Mr. Spiffy").

Through the blog, I followed her discovery of knitting, her advance to spinning and then hand dying. Through her stories, I began to feel a strong connection to this woman whom I've never met. She spoke to me; I felt I was making a friend.

Soon she's writing about a collaboration with other artisans to create an on-line presence for their wares. Her work is beautiful. Lovely. Lush colors. I wanted to purchase some of her yarn. But oddly none was available for sale. There were examples of her work but no current work for sale. "Hmmmmm", I thought, "What's up here?" It didn't fit with the previous enthusiasm. So back I went to Spiffy Knits to settle the mystery.

In June of '08, she writes about fatigue; she's unhappy about always being tired.

In July she's making the rounds of specialists -- Gastroenterologist. Hepatologist.

Then comes the dreaded C-word and the diagnosis in August.
Primary liver cancer.

But she continues posting both before and after major surgery only 3 days after getting the diagnosis.

She seemed so brave; so strong and optimistic. She had an intelligent, clear-headed approach to learning fast what she needed to know. She writes about chemo; you sense her preparation for the battle ahead. She never uses "D" word. Said, it wasn't about her; not about her life and her love for her kids and desire to see them grow up. She was clear about that.

But then story ends: no more entries. Nothing. Empty. Blank.

I felt let-down. I wanted more. I dreaded learning more. But I couldn't let it go. I googled her knitting friends. That's when I found it: the final good-bye: their memorial to her life from friends and sister artists. She died in October just 2 months after the diagnosis.

My sorrow was deep and profound.

I didn't get to bed for hours. I could not move. She stayed with me for days. She's with me still.

Today, I know this: a beautiful young woman's life touched my heart so unexpectedly. And I am blessed for the encounter. However brief. However illusive.

Monday, February 2, 2009

Great Glory

Credit for these inspirational quotes and images goes to 'artella muse' a fun and artsy website.