CRS

CRS.....if you've been on chemo...or if you are a woman of a certain age, you'll probably recognize this.....for others, a polite way of putting it is "Can't Remember Stuff."  For most people, when you have occasions where you can't remember a person's name, a noun, or whatever, you just chalk it up to forgetfulness.  For a breast cancer survivor(and I'd warrant other cancers as well), particularly a Stage IV survivor, that forgetfulness makes you fearful that maybe you now have brain mets.

Take a deep breath, and let it out slowly.  Fortunately, this isn't really the case...and for most people, it won't turn out to be cancer in the brain.  "Chemo brain" used to be laughed at, and doctors didn't really believe in it...but talk to any cancer patient who has gone through chemo and they'll tell you that they are foggy and that things they used to be able to remember don't come as easily to them.  I rejoice that not too long ago, someone actually did a study on it and discovered chemo brain is real. You can read up on it here.

If you say "But I've been off chemo for months!"  In actuality, I usually found that it took at least six months for side effects to go away (some go more quickly than others) and it will take up to about 18 months for most of the side effects to abate...at least that has been my personal experience each time I have gone through chemo (and stopped for any length of time).

In addition to chemo causing the fogginess, a lack of estrogen, particularly in women who have gone through either chemical induced menopause, surgical menopause or regular menopause, can cause the synapses to go a bit off.  Fortunately, that condition usually rights itself and you don't continue to have the problem.

Another reason for forgetfulness, or chemo brain, may just be out and out stress.  Being in stressful situations also makes you forgetful.  Also, if your diet has been poor, or you're not eating enough or eating things which are primarily highly refined carbohydrates, you may not be giving your brain good fuel.

So cut yourself some slack, and go eat some good brain food...cold water fish, nuts, things low on the glycemic index.  Fruit is also good...particularly bananas.  And when you're really in trouble and can't remember someone's name, just shout out "I'd like to buy a noun!"

A Funerval!

Tea at the Willard

Not too long ago, on the Inspire message board for Metastatic breast cancer, someone posted that they recently had a "Funerval."  She dubbed the term, and said that as most people would really love to attend their own wakes, why not have a "funerval" to appreciate them while they were still alive? What a great idea!

The guest of honor gave the list to someone who organized it, and it was a big party for everyone to enjoy and appreciate the honored one...in this case, someone who was diagnosed with Stage IV breast cancer.  The cancer patient didn't do anything, the friends all pitched in and they just had a big party.

What a great idea...and you could even hold anniversaries...although, I think doing it for 15 years is a little long....I DO love a party.  This photograph is the closest to a party I have...it's Maggie, me and Lourdes having tea at the Willard Hotel.  Maggie is a breast cancer survivor of 8 years, and Lourdes so far is cancer free, although her husband had breast cancer and her mother died of advanced breast cancer....and Lourdes is Maggie's sister. 

Worrying about the Future

Yesterday, someone was talking to me about waiting  to have a scan...she was terrified..."What if it shows something is there?  What if it is back?"  So many people who have had cancer or other life threatening experiences continue to live looking over their shoulder....fearful that something is going to happen.

Generally, I don't do this...Don't get me wrong, there were times in this journey when I did...it is only human nature, but I have never let that fear run (or ruin) my life.

 The way I look at it is like this....This is a daylily...each flower lasts just one day....but oh, during that one day, it is just glorious....Does it worry about the fact that tomorrow it won't be? That it will be an ugly husk of  a flower? No.  In fact, it is as it should be....the flower served to pollinate another flower and the plant will make seeds.

We have the ability to continue to look over our shoulders at something which might happen....something we have very little control over...or we have the ability to look forward.  I suggest looking forward...you're less likely to fall on your bum.

Some things to consider.  If you are really having difficulty dealing with fear of recurrence or fear of scans/tests, then I suggest that you talk to your oncologist or general practitioner. Perhaps some counseling will help, either through a therapist or perhaps a trusted clergy person.  Some people do find that they need anti-depressants or anti-anxiety drugs.  In fact, one person I know has to take a sedative before getting a PET scan because she is so wound up about it.

I would also highly recommend yoga, qi gong, and meditation.  All three practices focus on the here and now...not yesterday, not tomorrow, but the now.  Concentration on breathing helps when you have an anxiety attack, and meditation can also help in how you approach your fears or anxiety attacks...and indeed they have proven to improve your general health.  

Courage, Heroism and Cancer

A couple of years ago, a cyber-friend asked me to make a comfort quilt for her neighbor who was going through cancer treatments.  She sent some sayings, one of which I had never heard before, but loved it as I could relate.

It's attributed to John Wayne...and whether or not he really said it I suppose is beside the point.  "Courage is being scared to death and saddling up anyway."

Many people have said to me that I am their hero.  Mostly friends and relatives who have watched me as I go through these treatments.  First, I think "hero" is an overused word.  For one thing, I find it difficult to believe that football players and basketball stars are "heros."  Ok..so here is what Merriam Webster has to say about the definition:

1. a : a mythological or legendary figure often of divine descent endowed with great strength or abilityb : an illustrious warriorc : a man admired for his achievements and noble qualitiesd : one who shows great courage2a : the principal male character in a literary or dramatic workb : the central figure in an event, period, or movement3plural usually he·ros : submarine 24: an object of extreme admiration and devotion : idolI'm not mythical, I'm not an illustrious warrior, noble qualities? Hmm...there's one for thought, although I don't particularly feel noble.  I'll accept one who shows great courage I suppose, although truth be told, I don't feel courageous...I just do what I have to do.  No, I'm not in any literature, nor am I the central figure in anything...and 3, no, I've been called "cookie", "Sweetie" but never a sandwich (i.e. grinder, hero, submarine or sub).  I guess I can also accept that some people admire me...although once again, I don't quite get it....I do what I must....and yes, sometimes it means steeling myself to do it.  For example, I am currently on a chemotherapy called Xeloda which rather than being taken intervenously, it is administered as a pill.  The original dosage was four tablets in the morning and four tablets at night, taken for two weeks then one week off.  Unfortunately, it gave me hand-foot syndrome (swelling, peeling skin, burning sensation, pain of the hands and feet), severe gastric distress, and some other side effects which were none too pleasant.  The day before I was to start again was the first day I felt relatively human.  Not fun.  Two weeks of yuck.  So...when Tuesday morning rolled around and I had to start taking it again...I looked long and hard at those tablets.  I didn't WANT to take them.  Although the doctor reduced my dosage to 3,000 mgs rather than 4000 mgs....I really didn't want to have the same problem.  But, I gritted my teeth and took the tablets.  

That I can relate to was courage...yet, it isn't the courage I associate with heroism.  Now if I had charged into a burning house to save some people knowing full well I could be killed, that might be heroism...and yes, I understand that that example verges on stupidity...but you get the drift.

For most of us who are undergoing treatment, every day we are in treatment requires us to screw up our courage...and saddle up.  


For now, the drugs are working.  The reduced dosage may be working...I'll find out in a couple of days when my tumor markers come back.  I do know that I have low red blood cells, low hematocrit and some really whopping sized red blood cells who are trying to carry on for the reduced numbers....and yes, I still have hand-foot syndrome, and the nasty rash which burns and blisters on the back of my hands (a sign of toxicity), but at least my stomach was less upset...

Being at Peace

This last weekend I had the privilege of meeting a fellow breast cancer survivor who had some pretty big burdens. She struggled with the question of whether she had done things differently, if there would have been different outcomes in an area of her life.  This question is one which burns in the minds of some cancer patients....Would I have avoided cancer if I had done this?  Would I have been in a better position if I had gone to my doctor earlier?  Lots of "What ifs."

Of course, one of the other things that cancer patients have to deal with are the people who accuse you of causing your own cancer, and indicate that cancer is a "wake up call."  That maybe "Now you will take better care of yourself, stop eating so much, get more exercise, stop smoking..." fill in the blank...as if we need MORE life altering things to deal with at the time of diagnosis and we certainly don't need  more guilt.

I feel strongly that for most of us, we do the best that we can at the time. In retrospect, sometimes we think we could have done better.  However, with where we were at the time, with the information we had, with the personalities and resources  we have...usually the answer is we did the best that we could at that time.

The hard part is looking at that..acknowledging it, and then letting it go.  I think that most of the meditative practices, such as Yoga generally believe that.. Often, we go through the motions or even actually are able to get most of it....but letting it go, and allowing ourselves to have peace in that is difficult.

One of my constant expressions throughout life is "What is done is done" and "no use crying over spilled milk."  I am also taken by a line from the Book of Common Prayer...and if any Episcopalians can help me out, I'd appreciate it.  I remember a prayer which was said at the end of the day....only I can't remember WHICH office it is, but one of the lines is "what has been done, is done.  What has been left undone is undone," then it goes on to say to put it aside, and be at peace....go to sleep...tomorrow is another day.  All of us need to remember this and try to practice it.  I think it will lead to better inner peace and probably a healthier body...if not a healthier mind.

But there's another element to this.  I admit, I was a bit nonplussed this weekend when I heard from my college Freshman daughter who was preparing for her final exams this week.  Being "mom" I asked her if she had been studying hard.  She waffled...which indicated to me she had been umm.....enjoying life? rather than really hitting the books.  She started in on "I only have to get a 71 in order to get a 90 in the class and I only need a 3.75.. in that class and in another...."  This isn't new.  I'm not sure how I feel about it.

My daughter and I are two different people.  Maybe it is my having cancer is why she often snorts at me and says "there's more to life than studying."  Don't get me wrong.  She does well, and she's smart.  But in my book you work as hard as you can to do as well as you possibly can..and figuring out the minimum you need to do isn't doing the best you can.

I suppose it goes back to the first part of this essay.  If you do the BEST that you can, and work as hard as you can, then you can rest assured that no matter what the outcome, you did what you could in that moment.  I'm not sure that figuring out the minimum you can do is doing that...although it might just be a stress reliever for her and she is verbalizing this....but not really slacking off....but studying smartly and effectively.

A mom can only hope.

On the other hand, my husband's cousins say that she is great at time and project management and this is a useful skill once she gets out in the business world.

Time will only tell, and, of course...her grades.

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.