Getting Through the Night

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There are times, often in the middle of the long, dark nights, when that part of my brain which holds the fear and the sadness breaks through and I find myself in tears. Last night I created a “mantra” which (for now at least) seems to help me get back to a more positive place.

I repeat silently to myself, “live for today, live for today, live for today, live for today”.

There is a place for sadness…but the rational part of my brain knows that ultimately it is not helpful in the day to day business of getting me through this thing, which came out of nowhere and  took over my life.

I give you a poem by the great John Keats (1795-1821), who died too young…

 
WHEN I have fears that I may cease to be  
Before my pen has glean’d my teeming brain,  
Before high pil`d books, in charact’ry,  
Hold like rich garners the full-ripen’d grain;  
When I behold, upon the night’s starr’d face,
Huge cloudy symbols of a high romance,  
And feel that I may never live to trace  
Their shadows, with the magic hand of chance;  
And when I feel, fair creature of an hour!  
That I shall never look upon thee more,
Never have relish in the faery power  
Of unreflecting love;—then on the shore  
  Of the wide world I stand alone, and think,  
  Till Love and Fame to nothingness do sink.

 

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Being Home

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Did you know that my apartment is the most beautiful place in the whole world? Well it is.

When I lie in my bed, I look  at the dark  blue/green walls  with the cream colored trim and the white ceiling and they are beautiful to me.

As I wander from room to room, I admire the things I have accumulated over the years. Each one has a special memory and each is beautiful to me.

Sometimes the beauty of it all makes me weep.

And that is OK too.

In this spirit, I give you another poem by Edna St. Vincent Millay:

God’s World

 
 

 

 

 
O world, I cannot hold thee close enough!
Thy winds, thy wide grey skies!
Thy mists that roll and rise!
Thy woods this autumn day, that ache and sag
And all but cry with colour! That gaunt crag
To crush! To lift the lean of that black bluff!
World, World, I cannot get thee close enough! Long have I known a glory in it all,
But never knew I this;
Here such a passion is
As stretcheth me apart, — Lord, I do fear
Thou’st made the world too beautiful this year;
My soul is all but out of me, — let fall
No burning leaf; prithee, let no bird call.

Going Home…For a While

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Actually, I go home today for one or two weeks, and this is very good news. (I am so looking forward to a soak in the tub.)

The not so good news is that I have not yet gotten rid of all the leukemia cells and will need to return to the hospital for an third round of chemo, and another hospital stay. After that, if all goes well, I will receive a bone marrow transplant from my sister Nancy (who it seems is is a perfect match). 
I have decided that I may take a break from my blog just as I am taking a break from the hospital. How often I write will depend on how I feel when I am home and if I have anything significant (or funny) to report. Those of you who signed up to FOLLOW my blog may still be hearing from me…we shall see. Tomorrow, as they say,is another day, and I choose to leave my options open.
In the meantime, thank you for reading my words. Knowing you are out there has meant so very, very much to me as I have stumbled through the past five and a half weeks.
To my city friends…yes, you may drop by for a visit. (as long as you are not ill). I may even offer you a cup fo tea.
I plan will stick pretty close to home and when I go out I think I will wear a mask. However, a nice Fall walk on the streets of my beloved Upper West Side or into Central Park, in the company of an old friend, would be a great joy.
So…please get in touch. My home phone is: 212-787-1215.
    
This decoupage (by yours truly) expresses a lot of what I feel about my cancer experience so far…
Mary Stetten Carson
author, artist, teacher and lover of life

The Food Here is Very Good However…

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I am SO Looking Forward to Raiding my Own Refrigerator

Here at Memorial Sloan Kettering they believe “that nutrition care is as important as other aspects of care”. I am on a “Low Microbial Diet” because of my poor immune system.

 This means:

1. No raw fruits or vegetables and no raw salads. (except bananas and oranges).

2. No deli meats or cold cuts. (no problem)

3. No mold ripened cheeses and soft cheeses such as Brie, Camembert, feta, goat (I LOVE goat), and muenster.

4. No raw fish or shellfish (no problem here)

5. No soft serve ice cream or frozen yogurt. (?)

Lucky for me the hospital food which I can eat is very good and I can order meals whenever I want between 7:00am and 8:00pm. I can get coffee, tea and juice whenever I want. (I’m not sure if you can read this menu, but there are lots of good options, plus desserts and a menu of daily specials). To be honest, however, chemo kind of takes away your appetite (sigh), so a lot of food gets sent back untouched.

 


and they are “proud to offer” Afternoon Tea (With Cookies)                                   

                                                               



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There should be a special place reserved in hell for companies that demand huge markups for cancer drugs such as cytarabine.
************************************************************************

Cummings looks into prescription

drug shortages

 

Lawmaker sends letters to select distributors asking about markups

October 05, 2011|By Meredith Cohn, The Baltimore Sun

University of Maryland women’s basketball coach Brenda Frese said she was heartbroken that a chemotherapy drug used to treat her 3-year-old son, Tyler, for leukemia was in short supply and possibly unavailable.

When she discovered that some companies have been accused of putting profit over production or distribution of cytarabine and other drugs, she was angry — and she began writing letters.

“This is life or death, and the thought of some drugs being put out of reach made my stomach sick,” she said in an interview.

One of her letters went to Rep. Elijah E. Cummings, the ranking Democrat on the House Oversight and Government Reform Committee, who has since joined a growing list of lawmakers and regulators looking into the shortages of many lifesaving prescription drugs, which have reached record highs in recent years.

After his staff investigated, collecting documents and information from several large-scale pharmaceutical buyers, Cummings now alleges that several companies are selling some drugs on the U.S. Food and Drug Administration’s shortage list at huge markups. While not accusing the companies of wrongdoing, he sent his own letters Wednesday to five companies to request more information about the source of their drugs and their profits.

The companies — including one Cummings says is peddling the cancer drug cytarabine for $990 a vial, or 80 times its normal sales price — operate in a “gray market” that neither makes drugs nor treats patients. They are distributors who buy from manufacturers and sell to hospitals and pharmacies, though sometimes they also buy and sell among other distributors.

Cummings’ inquiry into the system could lead to price-gouging legislation or other laws to ensure that the product is safe, legally obtained and available.

“Price gouging for drugs that treat cancer in children is simply unconscionable,” Cummings said in a statement. “We want to know where these companies are getting these drugs and how much they are making in profits. Obtaining this information will help us develop concrete solutions.”

Cytarabine, a chemotherapy drug commonly prescribed for many types of cancer, has been in short supply for about a year, according to the Leukemia and Lymphoma Society. The FDA reports that its three manufacturers blame production delays and high demand.

Cummings wrote to cytarabine distributor Miami-based Allied Medical Supply’s chief executive Anthony Minnuto: “Although it is possible that you have higher labor and equipment costs than other distributors, it is difficult to understand why your company would charge over $990 a vial when the normal contract price for the drugs is approximately $12 a vial.”

Four other companies got similar letters about some of their products, which are being sold for 20 to 50 times their normal sale prices, according to documents provided to Cummings’ office by potential buyers.

One of the companies, Rockville-based Premium Rx National LLC, said it is reviewing the request.

“We intend to make a timely response to this inquiry. As a general rule, we believe secondary wholesalers play an important role in helping health care providers locate needed products during manufacturing shortages,” Brian Greenwald, the company’s president, said in an email statement.

The Emperor’s Trick for Patience

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You need a lot of patience when you are in the hospital. Today I had to be patient as the team which inserts PICC lines tried three times to find a vein that was not to twisty. Then I couldn’t find the little notebook which contains ALL my passwords. This almost pushed me over the edge, but of course I finally found it.  It was in the last place I looked….it always is.
So, today I offer you my favorite poem about patience and keeping ones cool in difficult situations.
**************************************************************

The Emperor’s Rhyme

 by A.A. Milne

The King of Peru
Who was Emperor too
had a sort of rhyme
which was useful to know
if he felt very shy
when a stranger came by
or they asked him the time
when his watch didn’t go.
Or supposing he fell,
by mistake, down a well
or tumbled when skating
and sat on his hat.
Or perhaps wasn’t told
Till his porridge was cold
That his breakfast was waiting
Or something like that.

So whenever the Emperor
got into a temper or
felt himself sulky or sad,
he would murmur and murmur
until he felt firmer
this curious rhyme that he had.

“Eight eights are sixty-four
Multiply by seven.
When it’s done,
carry one
and take away eleven.
Nine nines are eighty one
Multiply by three
If it’s more
carry four
And then it’s time for tea.”

So whenever the Queen
took his armour to clean
and didn’t remember
to use any starch.
Or his birthday, in May,
was a Horrible day,
being wet as November
and windy as March.
Or when sitting in state
with the wise and the great
he happened to hiccup
when signing his name.
Or The Queen gave a cough
when his crown tumbled off
as he bent down to pick up
a pen for the same.

So whenever the Emperor
got into a temper or
felt himself awkward or shy,
he would whisper and whisper
until he felt crisper
this odd little rhyme to the sky.

“Eight eights are eighty one
Multiply by seven.
If it’s more
carry four
and take away eleven.
Nine nines are sixty-four
Multiply by three
When it’s done
carry one
and then it’s time for tea.”

A Special Type of Human

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Thank You 
 
While everyone at Sloan Kettering contributes to making this a great hospital, it is the nurses who bring it all together for  the patients. Their professionalism, knowledge, tireless good humor,and deep empathy  never ceases to amaze me.  I have developed a deep respect for these remarkable men and women.
And it all started with a  women named Florence Nightingale. You can learn more about her below:

 
                                              ***********************************************

“I use the word nursing for want of a better. It has been limited to signify little more than the administration of medicines and the application of poultices. It ought to signify the proper use of fresh air, light, warmth, cleanliness, quiet, and the proper selection and administration of diet—all at the least expense of vital power to the patient.” 
 Florence Nightingale
Notes on Nursing: What it is and what it is not (1860)
To learn more about Florence Nightingale visit: 
          
 
 
 

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