Having trouble dealing with Baldness from Chemo?

Quite some time ago..longer than I want to admit, Carol Hoenig sent me a copy of Regina E. Savage's Mirror Makeovers and savvy thoughts of the everday gal Surviving Cancer and Baldness with a Sense of Humor  (978-0--9823705-06 , ©2009).  This is a fun little romp through one 10 year cancer survivor's thoughts about being bald and how she dealt with this issue which can be so traumatic for so many.  At 25 pages, it is hardly a heavy tome, but it carries with it an insight that I didn't have...it includes three markers for you to create your own inspirational messages and hairdos right on your mirror....so you can look in the mirror and see something different.

Ok. So it's not perfect, but I guarantee that it will make you feel better.   Or at least laugh a little. Darren Cranford offers many illustrations which are amusing... It is available on Barnes and Noble, as well as Amazon, as well as from Quiet Angel Publishing .  Check out the link, and you'll be able to find out more about Regina and the book.  Its also nice to know that a percentage of the sales is donated to Chrysalis To Wings and to Healing Oddyssey.

And...since they were so kind in sending me a complimentary copy, please leave a comment  below..(maybe even suggestions on topics you'd like me to tackle), and I'll have a random number generator pick a number and I'll send you a copy....One comment per person, please, and I'm afraid I'll have to limit it to residents of U.S.A. since I'll be forking over my own cash to send it to you. :)  I'll draw for this on June 15. So make a comment before then.

Thanks! and good luck!

The Challenges of Taking Xeloda

Xeloda is an interesting drug..it is given in tablet form and the patient takes it at home...twice a day, with meals.

Back when I was researching this, I thought that it was probable that although it is much easier for the patient (you don't have to drive to a chemo center, sit and wait to be called in, then sit and wait for the IV to deliver the chemo), it is also easy for the patient to make mistakes in taking the drug.

For instance, one thing I noticed is that although all the manufacturer's information say to take the drug within 30 minutes of completing a meal, some of the women taking it have waited for an hour afterward to take it.  This is problematic because the drug is metabolized and if it isn't taken with a meal and plenty of water, it isn't likely to do what it is supposed to.

In addition, it is easy to forget to take it after your meal...I have had guests and I've forgotten to take the tablets with me when we went out to dinner.  Even after they were gone, I forgot tonight to take them, and then had to eat something else in order to take the tablet.  If I gain weight with this, it won't be because of any steroids, rather that I am eating when I am not hungry in order to take the pills appropriately.

The last thing which happened is that I thought I understood the directions on how to take it.  I was told to take 2,000 mg twice a day within 30 minutes of eating.  Well....for the first session (two weeks) I took a total of  4 pills, when I was supposed to be taking four pills in the morning, and four in the afternoon.  I realize that it is possible for mistakes to be made in dosing when one is getting an IV, but I suspect that this kind of mistake (either taking too low a dose or missing a dose) is far more prevalent when taking drugs at home.

I'm not sure what the answer is for this...You'd think having a huge pill box with 7 days worth of "slots" with "AM" and "PM" on it would jar my memory...in fact, I set the box in front of me tonight with dinner....and promptly forgot to take them.  Thank goodness for apple pie. :)

So, double check your prescriptions and make sure that you are taking the appropriate amount....at least I took my medicine....even if it was only a half dose.

Holding on and watering our gardens

Recently, a friend of mine told me about an essay which Alice Walker (the author of The Color Purple) wrote.  He thought of me largely because of quilts and gardens.  Yet, as so often happens, when I read it I see something which applies to life in general and to the live of someone living with Stage IV cancer in particular.

In her essay, "In Search of our Mother's Gardens: The Creativity of Black women in the South (1974), Ms. Walker writes this:

Like Mem, a character in The Third Life of Grange Copeland, my mother adorned with flowers whatever shabby house we were forced to live in. And not just your typical straggly country stand of zinnias, either. She planted ambitious gardens - and still does - with over 50 different varieties of plants that bloom profusely from early March until late November. Before she left home for the fields, she watered her flowers, chopped up the grass, and laid out new beds. When she returned from the fields she might divide clumps of bulbs, dig a cold pit, uproot and replant roses, or prune branches from her taller bushes or trees - until it was too dark to see.

Whatever she planted grew as if by magic, and her fame as a grower of flowers spread over three counties. Because of her creativity with her flowers, even my memories of poverty are seen through a screen of blooms - sunflowers, petunias, roses, dahlias, forsythia, spirea, delphiniums, verbena . . . and on and on.

And I remember people coming to my mother's yard to be given cuttings from her flowers; I hear again the praise showered on her because whatever rocky soil she landed on, she turned into a garden. A garden so brilliant with colors, so original in its design, so magnificent with life and creativity, that to this day people drive by our house in Georgia - perfect strangers and imperfect strangers - and ask to stand or walk among my mother's art.

I notice that it is only when my mother is working in her flowers that she is radiant, almost to the point of being invisible except as Creator: hand and eye. She is involved in work her soul must have. Ordering the universe in the image of her personal conception of Beauty.

Her face, as she prepares the Art that is her gift, is a legacy of respect she leaves to me, for all that illuminates and cherishes life. She had handed down respect for the possibilities - and the will to grasp them.

I know that Ms. Walker is writing about the particular trials and struggles of black women living in the south, but I would offer that in many cases the same could be said about other struggles which are peculiar to the human form.  In particular, what she writes resonates with me as I struggle through cancer and the general lack of understanding what it means and the knowledge that my body is slowly failing me as I fight my own cells gone awry with toxic drugs.  

We all have to have respect for the possibilities, and tend our gardens passing on what we can...sharing and giving...no matter if our "garden" is the ability to make good meals,  paint a picture, frame a house, or write a letter.  We all have burdens and struggles, but there is so much more than that.   We are so much more than that.

I would encourage you to read the whole essay as it appeared in Ms. Magazine in Spring of 2002.  Here's the link

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     Sometimes I am amused by how my battle with cancer changes my perspective.  I recently finished a novel, An Echo in the Bone by Diana Gabaldon.  Sometimes I'm embarrassed to admit that I read her, although I do have to say that her writing has improved over the years..and they have always been a good romp even if a bit light....

However, I thought I'd share this with you...I suspect that it reflects Ms. Gabaldon's viewpoints on the topic....The conversation is between Claire Beauchamp Fraser (a time traveler from the 20th century who was trained as a surgeon in the 20th century and continues to practice her craft in the eighteenth century after traveling through time) and Benedict Arnold (who was an apothecary in New Haven, CT prior to becoming the revolutionary war figure and eventual traitor).  Claire begins this conversation begun about a bottle of laudanum, an opiate available in the 18th. century):

"...But relief of pain is one of the more important things I can offer some of the people who come to me--God knows I can't offer many of them cure."
     His brows went up at that.  "That's a rather remarkable statement.  Most persons in your profession seem to promise cure to nearly everyone."
     "How does that saying go? If wishes were horses, beggars might ride;?" I smiled, but without much humor.  "Everyone wants a cure, and certainly there's no physician who doesn't want to give them one.  But there ar a lot of things beyond the power of any physician, and while you might not tell a patient that, it's as well to know your own limits."

"You think so?"  He tilted his head, regarding me curiously. "Do you not think that the admission of such limits, a priori--and I do not mean only in the medical way but in any arena of endeavor--that such an admission in itself establishes limits:  That is, might that expectation prevent one from accopmlishing all that is possible, because one assumes that something is not possible and therefore does not strive with all one's power to achieve it?"

I blinked at him, rather surprised.

"Well....yes," I said slowly.  "If you put it that way, I'd rather think I agree with you.  After all"--I waved a hand toward the ten flap, indicating the surrounding army--"if I didn't--we didn't--believe that one can accomplish things beyond all reasonable expectation, would my husband and I be here?" (serving on the American side in the Revolutionary War).


(Diana Gabaldon, An Echo in the Bone. New York: Delacorte Press, an imprint of the Random House Publishing Group, 2009.  ISBN:  978-0-440-338871).  Page 565.

So, yes....do what we can to alleviate pain, but don't sell yourself short.  Much in the world cannot be explained...including the tenacity that some of us have to hold onto life and to persevere even though the odds seem against us.  Each day is our own...each day we can chose to look backwards, or forwards with worry...instead, the trick is to claim each day unto itself and make the best of it that we can....living every moment with whatever gusto we can muster.

Roadblocks

The other day, I was reading a plea for help on the Inspire website and something occurred to me.  We are our own worst enemies.  Often, when we are facing something we know will take a lot of work, or is scary in some way, or that we really don't want to do, we ask for help....then immediately shoot down the suggestions which come our way.

We through up roadblocks to our own progress.  I think it is probably human nature, but we can do this to excess and to the detriment of our lives.

We need to re-examine.  Look at this sign again..the first thing you see is "Bridge Closed to Thru Traffic"...but just below is a "detour" sign.  We can get around this....we can go forward, although it may not be the path that we originally were thinking of.  The path may not be the easiest, it may not be the most direct, nor may it be as scenic....but it can be done....and the best thing to do is to take it one small step at a time.

The World Doesn't Understand Stage IV diagnosis

This evening, I heard something and was quite stunned.  Ryan O'Neil was diagnosed with Stage IV prostate cancer.  His comment was "I'm so grateful they caught it early."  Early? Ryan, you need to get your ears cleaned out.  Stage IV is LATE STAGE cancer...it means you will never be free if you are lucky enough to survive it for 5 years and only 10% do.

There was a woman on the Inspire MBC site (Metastatic Breast Cancer) who said that a woman who was a close friend of hers commented "Oh, are you still fighting that? I thought you were over it."  Just because we have hair, doesn't mean we are out of treatment, nor that we have beaten the disease back to "No Evidence of Disease" (NED).  It means we usually have a monkey on our back, although I refuse to let this monkey be of any great weight.

It means that we risk bankrupting our families, or draining the money intended for college and retirement.

It means that when the NBCC says that patients should receive no more than 4 treatments because it doesn't prolong life that much, that we live in fear that our insurance companies will not allow further treatments, no matter how well we are doing or physically able....it means that we live in fear of not being covered at all because we have a pre-exisiting condition (something that "Obamacare" would prevent if it were allowed to stay in place, but that portion won't come into effect until 2014...leaving those of us who are not in the top 1% scared that we won't get the treatment which would help or that we need just because we are not wealthy.

It means that we can be on a drug, but have the cancer mutate so that drug is no longer effective.  Then, we wait and hope that something else will work.  It means that those of us who were diagnosed back in the dark ages and don't have fresh tissue samples can't be tested to see how effective a drug might be before destroying our nerve endings trying it to see if we can beat it back.

It means that people say stupid stuff to you like "Well, insurance companies have the right to pull the plug, just how far are you going to go and take these drugs?"  Well, I'm standing here in the grocery store talking to you....and if you really believe that, then you're telling me that my life isn't worth living or saving....and I wonder how you would feel if the tables were turned.

Mind Games

I'm kind of  in a fog..For one thing, I'm tired from too much stimulation and walking at the SAQA conference.

The second thing is I'm falling prey to something really common for a cancer patient.  On Tuesday, my oncologist drew my blood for the regular routine tests as well as my tumor markers.  He said that he'd call me on Friday with the results.  I gave him my cell phone number explaining that I was gong to be in Philadelphia for most of the week.

He didn't call my cell phone.  No messages.  He didn't call home either.  Now, part of me says "Oh, the results just didn't get back in because you were there late on a  Tuesday afternoon and perhaps there wasn't enough in your "batch." (they hold them and send them in in batches of I think 50 or so).  The other part of me starts to panic and say "he didn't call you because he has bad news and he didn't want to upset you over the weekend."

Unfortunately, he doesn't work on Mondays, so I didn't get a call today either.

Waiting causes you to play all sorts of mind games.  YUCK.