Girl Scout Motto: Be Prepared

What can I say?  I was a Girl Scout.  Brownie Scouts through Senior Scouts.  Back in the 60s, Girl Scouting in my hometown was kind of like being in a club.  It was your patriotic duty to be civic minded.  Scouting for boy and girls was a great way to accomplish that.  I think the Be Prepared motto was the same for both, but since I was not a boy scout, I won't swear to that.  

Anyway, the things you learn as a child are hard to shake.  I stand ready.  I make lists constantly.  I'm organized.  There is a huge difference between being prepared and being organized though.   You have to be prepared because things don't always happen in a nice, neat organized way.  Our dominoes, all lined up like the instructions tell us, don't fall like the the cute videos on You Tube.  Darn!

I'll try not to get off on a tangent here, but as an aside, I have to say that Mattie Mae, my mother-in-law (who lives right next door), was a Girl Scout all her life and didn't even realize it.  She's lived the Girl Scout life ALL her life.  If she'd had a badge-sash, it would have been full, full, full.  I'll wager that she could have taught Juliet Low (Girl Scout founder) a thing or two or three.  I could start a blog about my mother-in-law, which would be an incredibly fascinating read.  Take my word, at 85, she's prepared for anything.  She could survived anything.  She could mend anything with bailing twine or cure you with a combination of vinegar, honey, rubbing alcohol, baking soda, berries and who knows what all. I like to tell people that although she was born in the late 20s, it was as if she had grown up in the 1800s. But that's the way it was for most folks in the Ozarks of Arkansas.  They didn't know any other type of life.  Mattie Mae is one of a kind and I'm a much, much, much better person for having known her.  She's still  here, by the way, for those of you who do not know her.  I'll probably mention her name again from time to time.  She's one of life's blessings.  

As chemo time grows closer, I am reminded, yet again, that I need to be prepared.  As I blog along, new acquaintances pop up along the way; friends who also have breast cancer.  They offer advice that I'm so grateful to receive.  Here is one e-mail, (or part of one) from Koryn.  You'll find a link to her blog Koryns Story among my favorites. 

Other side effects from chemo I had besides extreme fatigue were constant nausea. Nothing they gave me helped and I found queezy pops from three lollies dot com on my last cycle. I highly recommend them they are the only thing that helped me. I also had Emend, Dexamethasone, and tried everything under the sun to include Zofran, Phenergan, etc. but nothing helped. I also had terrible migraines the first cycle.

My finger nails came apart from the nail beds and so did my big toe nails. It was painful.  I got acne. I had numbness in my feet and hands and still do wake up every morning with numb hands but that goes away once I begin moving around.

I got mouth sores. Food tasted awful but I didn't gain or lose over all in weight.  I actually lost some weight when all was done - I really lost my appetite about 3 months post chemo.  Odd, but it didn't last. 

When do you start??  I and a friend went to one of those food preparation places and stocked my freezer with 12 meals to get me started....I couldn't cook for months.  That was a good move. My husband was working a very high powered job in The Pentagon at the time and didn't get home until late most nights. Having the meals really helped. My church also helped us out a lot and brought  meals to us frequently.

I hired a teen girl who needed money to help me clean the house. I just didn't have the energy. It was a win win!  My neighbor walked my golden retriever every day for 6 months.  She was an angel from Heaven to me!

Walking will help and so will drinking lots of water. You have probably heard this. Chemo will back things up...keep your bowels moving....walk a little every day even if 10 minutes...add as you are able....seriously this is the single best thing you can do for yourself to get through. It helps boost your mood too.

In my past life, being prepared was an occasional challenge.  I didn't think much about it. Without a doubt, this chemo thing will prove to be my biggest. How do you prepare for the unknown?  Some people tell me that I'll just breeze through chemo.  No problem.  I've been told:  You won't have nausea; they give you medicine for that.  You might feel a bit fatigued the first couple of days, but after that you'll be okay.  You'll be able to work.  Just rest when you can.  You might not lose your hair; some people don't.  Oh please, please, please let this be me.

Here's what Koryn said about that in another e-mail to me (her last sentence is hilarious!):

As for chemo, I will tell you what my oncologist told me. Yes, some women who go through chemo do not lose all their hair. The women with breast cancer? THEY lose all their hair. Period. It is a matter of the chemo drugs (all of them) given for breast cancer. Some chemo regimens for, say, lung cancer, doesn't affect the hair as much. So you can pretty much plan on needing that wig. I had fun with the wigs. I never left home without it. And the only day when I did, I wore a scarf and was going to chemo treatment that day and I hated it. I felt like everybody was staring. If I should have been okay with it anywhere it should have been going THERE, right? But I didn't feel comfortable at all but it was hot and I was tired and I just wanted a break from the tight itchy wig.  Other women feel totally free going everywhere being bald. I had a friend who was younger than me going through it and she met me at Starbucks one day for coffee with about 1/4 inch gray fuzzy "after growth". She looked like a refugee. She is a beautiful woman. She told me that she thinks people need to know that this is what cancer looks like and that very young women get breast cancer and she is not going to hide that. She is out to eductae the world about the evils of hormones and doesn't care how she looks in the process. So you will find where you fit in there, or somewhere in between. At home I didn't even go bald because I couldn't stand how I looked passing by a mirror. Plus, my dog growled at me!

The other day Dwain and I scanned a catalog that the American Cancer Society gave me, "tlc."  I guess that stands for Tender Loving Care.  They have all sorts of lovely hats, scarves, post-surgical necessities (oh how I wish I'd seen this catalog before my mastectomy because they feature a brand new item: surgical drain belt with pockets.  For those who have dealt with the horrors of drain tubes, you will know precisely what I'm talking about.  If you're about to get a mastectomy or know someone who is, you've got to check this out.  A life-saver, if you ask me.), bras and foam breast forms, and so so so many wigs.  I asked Dwain to help me find a wig that didn't look too "wiggy."  We looked and looked.  Dwain made big Xs over the ones he disliked the most.  We finally decided on the wig pictured below.  The color will be rich brown with golden highlights (the one pictured is light reddish brown).

I'm not sure that you can ever wear a wig that doesn't actually look like a wig, but hey, what choice do you have if you're a woman and you're basically bald?  You can wear a wig, a scarf, a hat, or you can go around looking like one of the Coneheads from Saturday Night Live fame.  "tlc" has a super great return policy, too.  If for some reason I don't lose my hair, I can return my new unused head of hair. 

I guess I better get busy and start using my days to prepare.  Dwain and I have already started stocking the freezer with quart-sized freezer bags of homemade soups.  Mattie Mae gave us tons and tons of fresh fruit that she grew this summer -- also in the freezer.  Those will be good for those low energy days.  How many of those days can we expect?  

I'm usually such a high-energy person and I love to cook.  I love to be out and about.  I don't like to be waylaid by anything.  Ever.  I hate the idea of this whole chemo thing so much.  I dread it. It's on my mind constantly.  But I hate the idea of breast cancer coming back even more.  So I guess I better just suck it up and get used to...  But get used to what? 

I can prepare for most things.  My parents instilled a strength in me about everything, including sickness; if you're sick, go to bed, take your medicine, take care of yourself, get well and then go on.  Don't linger.  Don't enjoy being sick.  Believe me, I don't enjoy being sick.   That said, how do you prepare for the unknown?  How do you prepare your mind for such a thing as this?

Chemotherapy? Your Dentist Has Answers

Evidently when you take chemotherapy your body is at risk for developing infection, and apparently this means you can't have your teeth cleaned either.  Dwain noticed the little dental reminder magnate on our refrigerator that my next dental appointment was scheduled for late February.  He said, I don't think you can have your teeth cleaned while you're having chemo.  James' dad had to get his teeth seen to before his chemo started, so you might want to call Lynn (that's our good friend, who is also our dentist, he and his wonderful wife Margie.
My dental appointment was hurriedly set up for this morning at 7:30.  I know that is really early, but I don't mind.  Hey, they got me in on short notice, right?  I'm an early-bird anyway, so what's the difference?  Lynn and Margie know what I have gone through recently and what I'm about to endure in the near future.  And let me tell you what, both of them are a fount of information.   Lynn may be a dentist, but he has an incredible knowledge of cancer and chemotherapy and what they can do to your body medically.  He was concerned with my teeth, which after x-rays, he pronounced me healthy as could be.  He said, chemotherapy will dry out your mouth, which is a bad thing.  It can lead to tooth decay and gingivitis.  Drink lots of water.  Dry mouth is a significant condition.  Do not ignore this at all.  He handed me a sample of something called biotene dry mouth mouthwash and biotene  dry mouth toothpaste.   Use this and any other toothpaste that contains fluoride.  Rinse with Listerine, that will help to prevent gingivitis and other gum disease.  In fact, you can brush with it as well.  Brushing with baking soda as well as toothpaste to eliminate acid.  You don't want acid to build up on your teeth or in your mouth.  
He ran his fingers over my gums, top and bottom, pressing hard; something I can't remember him ever doing before.  I have no idea what he was checking for, but he seemed satisfied.  Then he pulled down his face mask, leaned back against the counter behind him and asked, Do you have any questions?  Any questions about your chemotherapy or anything associated with it?  I will try to answer them or find answers for you.  I told him no, that I wasn't far enough along in the process to have thought of questions to ask yet.  But I know that when I do, (or I should say WE, because Dwain's as involved in this process as I am.  In fact he was at the dentist appointment with me and heard every single thing Lynn had to say) Lynn or Margie will be the first people we will call, day or night.  Margie offered to come sit will me when I have my first chemotherapy session, and I have no doubt she means it.  She sat through chemo sessions with another friend of hers who was going through the same thing several years ago.   
Yesterday evening, although I hate to admit it, I had a meltdown; not a temper-tantrum, exactly, but a meltdown.  I wanted to throw things at the wall and scream at the top of my lungs (I resisted).  At whom, exactly, I could not say.  At the unfairness of it all.  The "why me-ness" of it all.   I know.  I know.  It was a selfish moment; a rewardless moment.  But sometimes you just need to cry and rage.  And I have to give Dwain huge, huge credit.  Although he started out trying to fix everything for me (as men so often do), he finally decided to just listen.  I honestly thought that by the first of the year, by January 1, 2011, I would be basically done with all that I've had to endure since "the discovery" in early November.   But evidently the little pill that I thought was going to be all that I had to take for five years, is going to be at the end of my treatment, not the only treatment.  Chemo comes first.  And I'm angry about it.  And I am scared to have to go through it.  Poison will be my cure.  Can you imagine?  Poison will kill cancer cells, hair cells, white blood cells, red blood cells and put my immune system at great risk for 18 weeks -- among other things, like my teeth.  What about my job?  How fatigued will I be?  How sick will I feel?   Oh yes.  Chemo treatments make you feel so nauseous that the doctor has to give you anti-nausea medicine.
So many questions, and I won't know the answers until I've lived through it.  That's why I'm writing this blog.  Maybe someone reading this will find help for themselves or someone they love, and pass it along.  I found a blog, Susie Johnson's Breast Cancer Triumph, that helped me.  This girl is only 35 years old and lives in Australia (or I think that's where she lives).  Her breast cancer was discovered in August.  Start from the beginning of her August discovery date and read to the present.  It's very insightful.  They do things differently in other countries, which makes me grateful to live where I do.  I honestly think we have a better health care system -- warts and all.