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Mikki630's Breast Cancer Chronicle
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Lymphedema
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Your Kids, Your Cancer
Women's Health & Cancer Rights Act of 1998
Reconstruction Photos--WARNING!!! GRAPHIC
Paget's Disease of the Nipple
The Breast Self Exam (BSE)
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Understanding Fibrocystic Breasts
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Sharing our stories about the good, the bad, the ugly and the FUNNY aspects of breast cancer

 

 

Demystifying breast cancer, one step at a time...  EMAIL ME

Helpful hints from

Michele Luise :

 

EMLA cream is a Godsend for needle sticks (see my PORTS page)

 

Consider taking a small tape recorder with you to your doctor appointments. ASK permission before you tape--I found my docs didn't resist once they knew why. I found it much easier to listen to the docs if I knew I had something to refer to later at home.  I also found they tended to speak more simply & explain things better if they were being recorded.

 

When booking your chemo or radiation appointments, try to book as early in the day as possible. You will reduce the chance of the docs/infusion center/radiation center getting behind schedule if you're one of the early birds! Also, after chemo you may be told to drink for the next 12 hours & urinate frequently--this is asier to do if it's NOT in the middle of the night!! Also try to scehdule ALL of your chemo appointments at once. You have a better chance of getting the time of day you want.

 

Plan on taking it easy for at least the 1st 2 days of your chemo. Not everyone feels bad, but most all feel a little tired. Pamper yourself!!

 

Buy and wear your wig BEFORE you lose your hair! Your scalp will be tender as you start to lose your hair and you do NOT want to break in a scratchy wig on a sore head!

 

 

 

We cannot direct the wind...But we can adjust the sails. 

-Anonymous

 

 

I just HAD to share this beautiful piece from one of my fellow ivillage BC board members!

 

Closing my eyes and dreaming of what it will be like for mankind when they find the cure for this insidious disease that took its toll -- but not my life. I am a warrior who bears the scars of battle, One who spent sleepless nights in fear but came out into the beautiful light of day...stronger and more alive than ever. Victorious ~~~~~~

Healing thoughts for all who are undergoing treatment now. May you be blessed...and victorious. Cyndy(blondewithbrains) in NJ

 

Strange (and not so strange) things I have noticed:  A list...

 

After my mastectomies, when I would drink something ice cold, I could actually FEEL it on the OUTSIDE. The sensation of "cold" was now noticeable in a whole new way!  I can only imagine that the nerves that were more superficial before breast tissue was removed were now closer to the INSIDE of me than before. When I'd swallow, I would notice the cold drink slide all the way down!

 

Bras hold breasts UP, but BREASTS hold bras DOWN!   (see the full HILARIOUS story under "Fun with Mail-Order Prosthetics")

 

Ramen noodles and chemo don't mix.

 

Fast food chicken sandwiches and chemo don't mix.

 

You can freak out little kids in restaurants by moving your wig

 

Mosquitoes HATE chemo.  One of the best things I noticed during chemo was that while mosquitoes would approach me, they'd get about 6" away and come no closer.  I wonder if they would explode like they do after biting the guy in that commercial for hot sauce?

 

You can use your wig as ammunition against your pre-teen's friends' misbehavior. My 10 yo daughter was absolutely mortified at the thought of her friends ever seeing me bald. I used this to my advantage. Once, while driving my daughter and her friends home from a movie, her friends began acting up in the van.  All I had to do was catch her eye in the rearview mirror, place my hand on top of my head and grab the wig--the implied threat being "Do I have to take my wig off?"  Immediately she apologized profusely, "I am SOOOO sorry MOM!" dealt with her friends and that was the end of the misbehavior. (Note: this only works if you really intend to go through with it. She knew I wasn't even CLOSE to kidding LOL)

 

Cats love to curl up and fight with wigs.

 

Dogs love to EAT wigs.

 

Cytoxan gave me a "hot snout" during its infusion.  If it was infused too quickly, my nose felt like someone was blowing hot air up my nostrils.  Upside: once they slowed the rate of infusion, this subsided. Downside: slowing it made the chemo sessions last longer than they normally would have.

 

Children LOVE your bald or fuzzy head. My son would snuggle up next to me and rub what he called, "Momma's little fluff-fluff head."

 

Children LOVE your wig (and hats and scarves)

 

You will have a love/hate relationship with your wig/scarves/hats.

 

My wig was just gorgeous!  I used to joke that once my hair grew in, I'd have my hubby shave my head and never have a bad hair day again. Three years out, this hasn't come to pass LOL. I'm proud of my bad hair days

 

Once I was diagnosed with cancer and started treatment (surgeries, chemo, radiation etc.) I bought what turned out to be (for me) all sorts of useless sh*t. Post surgical camisoles with "puffs" for breasts (used once as, they too, would slide up and look like I was fighting with 2 fuzzy midgets under my shirts). Headscarves that made me look like a really sick Hollywood has-been on a really bad day (think dark sunglasses, "NO PHOTOS PLEASE!"). Hats!  I NEVER looked good in them before cancer, so what WAS I thinking???

 

If you let the weeds in your flowerbeds get butt-high, your neighbors will ultimately fix up your garden. They'll tell you it's all to help out during your recovery, but it may actually be because they're tired of looking at them!  Hey, I'll take help where I can find it... heeheehee

 

Some of your friends can REALLY cook!

 

And some of them CAN'T! (just kidding--thought it fit well here)

 

You are stronger than you think you are.

 

 

 

A cute little song for all undergoing chemo---

 

Sue Friedman wrote this hilarious ditty. She started a nonprofit organization for women at risk of hereditary breast and ovarian cancer.  Please visit her website:
www.facingourrisk.org

 

Neutropeniaville

 

(Sung to the tune of Margaritaville)

 

I'm out here in Texas

My doc drives a Lexus.

He keeps telling me my prognosis is good.

To say that is easy

When you're not bald and queasy

And your only concern is "iron or wood?"

 

Wasting away again in Neutropeniaville

Searching for a vein which hasn't been stuck.

I'd like to claim there's a doctor to blame.

But they say, it's my own bad luck.

 

Don't know the reason

I'm staying all season.

Nothing is sure but this new hematoma.

But it's a real beauty.

All black and blue-ey.

I should have asked for the nurses diploma.

 

Wasting away again in Neutropeniaville.

Searching for a vein which hasn't been shot.

I'd like to claim there's a pathologist to blame.

But he says he's probably not.

 

I got a bad migraine I was in so much pain.

I asked my doctor to give me relief.

Now I've a bottle of Darvon,

And will soon have a buzz on.

And dream I'm in Florida out on some beach.

 

Wasting away again in Neutropeniaville.

Searching for a vein that hasn't been blown.

I'd like to claim there's a hospital to blame.

But they say the fault could be my own.

 

 

 

 

A Reason, a Season or a Lifetime...

 

People come into your life for a REASON, a SEASON, or a LIFETIME.

When you figure out which it is, you know exactly what to do.

 

When someone is in your life for a REASON, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up or out and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled; their work is done. The prayer you sent up has been answered and it is now time to move on.

 

When people come into your life for a SEASON, it is because your turn has come to share, grow, or learn. They may bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it! It is real! But, only for a season.

 

LIFETIME relationships teach you lifetime lessons; those things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person/people (anyway); and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant.

 

 

 

I'VE LEARNED......

~ that you can do something in an instant that will give you heartache for life.

~ that it's taken me a long time to become the person I want to be.

~ that you should always leave loved ones with loving words. It may be the last time you see them.

~ that you can keep going long after you can't.

~ that we are responsible for what we do, no matter how we feel.

~ that either you control your attitude or it controls you.

~ that regardless of how hot and steamy a relationship is at first, the passion fades and there had better be something else to take its place.

~ that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

~ that money is a lousy way of keeping score.

~ that my best friend and I can do anything or nothing and have the best time.

~ that sometimes the people you expect to kick you when you're down will be the ones to help you get back up.

~ that sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

~ that true friendship continues to grow, even over the longest distance. Same goes for true love.

~ that just because someone doesn't love you the way you want them to doesn't mean they don't love you with all they have.

~ that maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

~ that no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

~ that it isn't always enough to be forgiven by others. Sometimes you have to learn to forgive yourself.

~ that no matter how bad your heart is broken the world doesn't stop for your grief.

~ that our background and circumstances may have influenced who we are, but we are responsible for who we become.

~ that just because two people argue, it doesn't mean they don't love each other And just because they don't argue, it doesn't mean they do.

~ that we don't have to change friends if we understand that friends change.

~ that you shouldn't be so eager to find out a secret. It could change your life forever.

~ that two people can look at the exact same thing and see something totally different.

~ THAT YOUR LIFE CAN BE CHANGED IN A MATTER OF HOURS BY PEOPLE WHO YOU DON'T EVEN KNOW.

~ that even when you think you have no more to give, when a friend cries out to you, you will find the strength to help.

~ that credentials on the wall do not make you are a decent human being.

~ that the people you care about most in life are taken from you too soon.

 

 

 

A few words about some of the tests you may undergo...

 

COLONOSCOPY: (or, "Your Friend, the Toilet") (7/16/00)

 

(This is a HILARIOUS story I just HAD to share!  Everyone is always SO freaked out at the thought of having one, I'm living proof that you can even find humor in THIS test!)

 

The ins & outs of a colonoscopy--had one a few weeks ago--piece 'o cake considering all that we've had to endure!   The prep is definitely worse than the test!

 

There is a growing number of docs who recognize that women with BC have a higher incidence of colon cancers. Many are ordering colonoscopies as a baseline "just in case." Once you have that first one (if normal) you most likely won't need one for another 5-10 years unless you're having symptoms of a bowel problem (also will depend upon your age & family hx as well).

 

There are a number of preps, depending upon your doc & the facility. Some patients need to  to drink a gallon of salty cherry liquid the day before. My prep involved something called Fleets Phospho-Soda. It was 3 oz of solution that you mixed with water & took in divided doses (1/2 the night before, 1/2 the am of the procedure).

 

It was a yummy (NOT!!!!!) ginger-lemon flavor. I couldn't drink all of the solution each time, so I decided to go the enema bag til clear route--(nurses here will remember the High-Hot-Helluva Lot enemas from the hospitals). Since I couldn't finish the prep, I wanted to make sure I was "clean".

 

There is a funny story attached to my prep (well, it's funny NOW LOL): the day before the test I was on clear liquids only (no red or purple popsicles or Kool-aid--they make your insides look bloody to a doc). I began my prep solution at 7pm and JUST as I began running to the john, we lost our power during some hellacious storms!

 

Here I am, got the runs, grabbing a flashlight, diving over my kids to run to the toilet--thank God we don't have well water or we couldn't have flushed --ick. Tornado sirens. GREAT--I'm gonna die with my pants around my ankles. LOL  I joked that as a nurse whose most recent job was adult incontinence products, I was lucky I had adult wipes and diapers in the basement if I needed them. What an experience!

 

The test itself was not bad at all!! My doc & I had decided to avoid the IV sedation (due to the lymphedema in both arms, I didn't want an IV stick). Many docs don't get sedation for their OWN tests (I didn't know that--and then they go to work).Well, every nurse I talked to made such a big deal out of me NOT having sedation--they hadn't had many patients go "natural", that I ended up chickening out & getting the sedation (dumb, dumb dumb re: IV in my lymphedema affected arms). I floated but watched most of the test on the screen.

 

They give sedation more for anxiety over having a tube stuck up your butt than for any pain. They expand your colon with air.You may feel a little momentary cramping as they move the scope around a curve, but that's it. They can use a pediatric scope on you that is only as thick as a chubby pen--there was NO discomfort with this scope. I wouldn't hesitate to have this test done without the sedation next time.

 

After the procedure, you'll be in a recovery room to let the remnants of your sedation wear off and to let the "butt air" fly--they want you to get rid of the air they pumped into you. Don't worry-it may be loud, but it doesn't smell (thank God! LOL). It's the only situation I know of where it's appropriate to make that noise in public... (I could be wrong LOL)

 

Procedure takes 15-30 minutes usually ( slightly longer if removing polyps), recovery was less than 1/2 hour in my case. Hope this tale lessened your anxiety!

 

 

By the way...ABOUT THAT PREP SOLUTION

 

I was thinking of patenting some new flavors:  So far, it seems that NOBODY I know has enjoyed "Salty Cherry" or "Salty Ginger-Lemon". Since the sh*t is ALREADY salty--why add SWEET to the mix????????? Wouldn't it make more sense to make it taste like a salty BROTH like veggie or chicken or beef flavored?????????

 

While I'm on a rant here, what would possess these drug companies to combine sweet with overwhelmingly salty? Rest assured that THEY must know something that WE don't! So, next time I make Kool-Aid for the kids, I'm gonna go easy on the sugar and add 4 cups of salt to the pitcher. And make sure the path to the bathroom is clear.... LOL

 

By the way, the name "Go-lytely" will make you go ANYTHING BUT! LOL What a misnomer. Cheers! Any other flavor ideas?

 

 

 

 

FUN WITH MAIL-ORDER PROSTHETICS! (7/16/00)

 

Jodee is a GREAT company--very compassionate women staffers and very good service. This is a FUNNY story.  Remember that I had a bilateral mastectomy, so this won't apply to those of you missing only a partial or single breast.

 

I tried regular silicone prostheses and a mastectomy bra, but in my size (42D)the combo weighed as much as a full 2 liter bottle of soda! I found that to be uncomfortable and HOT!  Smart me, found the Jodee catalog & ordered a bra with FOAM prostheses built right in...nice and lightweight. I thought they would be PERFECT for me. So I ordered my usual size.

 

They arrived and I promptly tore into the box, went into our powder room and tried them on. My family heard a burst of HYSTERICAL laughter come from behind that closed door...

 

I walked out of the bathroom with my fancy new hooters and everyone burst out laughing! It appears that they run rather LARGE and when I ordered a D, it looked like an H--resembled 2 huge Tupperware bowls on my chest!! We laughed so hard, we almost wet our pants LOL!!  The poor woman at Jodee was mortified but very grateful for my sense of humor. I advised her to tell people that they run LARGE! I re-ordered a B cup and that was perfect. But my escapade doesn't end here...

 

I had joined a new company and had to fly from MI to California for a business trip. Since none of these people knew I'd had cancer, I wore the Jodee bra on the plane. Well, until BOTH boobs are gone, you NEVER realize that not only does a bra hold boobs UP, but BOOBS hold a BRA DOWN! I'm sitting on the plane & start to notice my Jodee's creeping UPWARD! I discreetly tug & hope they'll stay in place for the rest of the flight. No such luck.

 

By the time the plane landed, they were up so high (not only did I look STACKED) that I no longer needed the airline pillow to support my head. First time I've ever been able to bury my face in my own breasts LOL!!!!  Can you just PICTURE this???  I put them in my suitcase and went without after that!

Hope you got a chuckle out of this!

 

 

HALLOWEEN FUN WITH PROSTHETICS 1999 & 2000

 

1999: My then-12 yo daughter was having difficulty deciding what to be for Halloween that year.  I jokingly told her she could use my bra with the fake foam hooters built in and go as the "newly enhanced" Britney Spears. So she DID LOL--we bought one of those headsets & away she went. Pretty cheap costume LOL.

 

The following year, she was having the same dilemma--"What should I go as?" Having no energy (or imagination) I told her to repeat the Britney costume. She rolled her eyes at me, as only those 13yo's can do.

 

She went into the other room. After a few minutes, she came to show me her costume.....but she turned the tables on me!  I was expecting Britney, but what did I get?  Well, she had strapped the hooter bra on, alright, but she had put it on her BUTT!! She put on a pair of spandex pants and was going to go out as JENNIFER LOPEZ!!  I was laughing so hard, I almost peed my pants!

 

 

 

List of suggestions for women having a TRAM flap

 

 

1. Find nightgowns and robes that button or zip all the way down the front. 

 

2. Make sure you have a comfortable sports bra or two. 

 

3. Sweat pants come in very handy the first weeks. Wearing jeans or anything with a zipper in the front can be a challenge- even for several months.

 

4. If you have a passenger van, have a stool on hand to get in. 

 

5. Identify a comfortable place to sleep sitting up or propped up. Find a variety of sizes and shapes of pillows.

 

6. After surgery for pain: Morphine might make you feel sick. Ask for something else like Demerol if you need it.

 

7. In addition to pain medication, some women have needed muscle relaxers  to stand up straight again.

 

8. Enlist a friend to come to the hospital and wash your hair when you feel up to it.

 

9. Looking good helps you and those around you feel better- bring along makeup and costume jewelry (nothing expensive).

 

10. Ask for stool softeners or laxatives early.  The meds and surgery can mess up your system and the discomfort of constipation can be worse than some of the surgical pain. 

 

11.  If someone can stay with you in the hospital, it is helpful.  Because of the abdominal incision, sitting up and scooting up in bed are difficult.  Having someone right there to help or summon help is wonderful.  They can also help you walk several times a day which can help your progress (and get your bowels moving again). 

 

12. Get Susan Love's Breast book-lots of great info that can help you understand your situation and help you with questions for your Dr.

 

13. Ask for copies of your pathology reports.  The information will help as you read about breast cancer. (Another woman suggested:"What I have done today for my sister is I called my oncologist's office and asked that my copy for my complete history as well as my mother's [as you remember she died in 1989]. I thought this information would be very helpful in her quest to find answers and get the best possible care. I also now feel that it is important that both my sister and myself should keep all this information as we might be able to pass this all on to our daughters if they ever need it.")

 

14. Access the Internet site: www.ivillage.com. Go to the "board" then "AllHealth" and then "Breast Cancer."  You will find others who have gone through the same procedure

 

15. Be patient.  Each woman is unique in terms of healing. Some will return to work in 3 weeks, some in 6, some may take longer. 

 

16. Follow doctor's orders for exercise.  If possible, build arm and leg muscles before tram flap. 

 

17. Remember you will no longer be able to use the abs.  Getting out of bed and turning over in bed takes practice.  You will figure this out, remember to be patient!!

 

18.  You may experience abdominal "contractions" or slight cramping- this is because the muscle is still attached in your abdomen. It is perfectly normal and does not hurt- eventually it feels like a girdle might feel. My Dr. says this can last up to 2 years.  It really isn't anything that interferes with activity. Just nice to know it is "normal"!

 

19. Take care of yourself and let others take care of you too.

 

20. Celebrate your decision to have reconstruction and your choice of a TRAM flap!