Wigs, chemo hair loss. Los Angeles, CA. What have you learned?

Thank you, rogam!

A sister from the southern U.S. writes me.  Yes, yes!  My parents are from the South, and I try to ask the Lord to bless me with the good things those people are and have.  (Example: The manners to say "Hello," or "Good Morning."  I was raised in Southern California.

My current hairdresser stunned me by telling me that she can make me a wig.  I have to say immediately, I looked at her like I don't understand English.  That would be a kindness too good for me because I'm humble (I have Godfearing witnesses), and then I realized, "Claim the favor, expect blessings from the Lord!"

Thank you, for the heads up about returns!  I think I should allow my hairdresser to make the human hair wig and then get a synthetic wig tailored to it.

rogam, I'm the "responsible one."  I'm the one others can lean on, it's hard for me to do the same.

Love in Christ,

Sessna1

I agree with my Sister in Christ that she will NOT need Chemo.  Amen.  I had never heard of sisterlocks.  I had to "Google" it and read up on it.  I did not see any pages that offered sisterlock wigs.

Yes!  The challenges keep you uncertain, on your toes, and off the boards too much.

BC does need to come out of the shame closet.  I told my nurse practitioner that when I am successful in remission, I'll wear the little pink backpack.  I will have earned it.  At first, I didn't want to think about using it because of what it means.  Then I thought, that's not right!  People need to know.  Then the Holy Ghost hit me with some wisdom, "At least they didn't choose YOUR favorite color, girl!"  Enuf' said.

Are you doing the sisterlocks on your own, or would your hairdresser have any info on the latest, including wigs?

Thank you for sharing.

Love in Christ,

sessna1

You are welcome, Sis. patoo.  I have a prayer warrior teaching me to pray more earnestly and beseechingly.

Praise God!  Thank you for answering our prayers, Jesus.

From a Biblical teaching heard on KWAV 107.9  Los Angeles, CA, Acts 16:16-40, King James Version

SUMMARY:   Everyone needs a song to sing at midnight.  When times are most darkest we need to be able to praise the Lord.  We need to be able to come before him in faith with joy in our hearts.  It reminds us and others that we are connected to Him, His Servants, and His Obedient Children.

The Apostle Paul and a leading member of the Christian community, Silas, were put into prison for crimes against Rome.  They were in Macedonia at the time, a province of  the Roman empire.   Their actual offense was casting a spirit out of a young woman.  The spirit in her had the power to make predictions.  Her masters earned money from her fortune telling.  When Paul and Silas they cast the spirit out, it costs them a good income source.  Angrily, they took Paul and Silas before the magistrates who tore their clothes off them, and then commanded them to be beaten and thrown into prison.

The jailor was directed not to let them loose.  Their feet were bound in stocks.  At midnight, Paul and Silas prayed and sang praises to God.  The other prisoners heard them.  There was a great earthquake, which shook the foundations of the prison and opened all the doors.  Every prisoner's shackles and restraints were loosed.

The jailor awoke, as he was asleep at the time.  He saw the prison doors open and realized he would be killed for allowing the prisoners to escape.  He drew his sword to commit suicide.  Paul cried out in a loud voice and told the jailor not to harm himself, as no prisoner had escaped.  The Jailor asked Paul and Silas what he must do to be saved.  The Jailor was saved by hearing the Word of God and believing.  The earthquake roused those in the prison house also; Paul and Silas preached the Word to them.  The Jailor took Paul and Silas out of prison, washed their wounds, took them to his house and fed them.  The jailor and all of his house heard the Gospel preached and received salvation.

Sis. Patoo, you are right!  That was it.  I was disheartened by the content.  I know full well that a good web site takes time, money, time, commitment, time, and more money.  I know that.

Oh, man. 1st cycle, two days out from infusions.  The cramps/nausea is worst.  Then the dizziness and that food all tastes like zinc lozenges (think sucking on nickles).  There is a GOOD reason to keep your bathroom floor clean - you may have to nap on it.  I did not toss my cookies, but I was too woozed to make it back to bed.  The cold helped my shivering until I could get back into my bed.  Taking my pain meds.  God IS in control.

Sessna1

Dear Sis.s patoo, ILinda, Roya, and rogam,

I am feeling your prayers, and you are in mine.  I had a shot from the doctor's office because my white blood cell count was too low.  The nurse said it would take a week to kick in.  I could testify that it took less than a day.  I visualize the angels pinpointing the cells that must be removed from my body.  I pray for our leaders, the Obama family, and I am grateful for you being there.

Love in Christ,

Edna

Amen, Sis. Roya, I am in agreement with you in prayer and all of my spirit.

Hello to my Sis.s!  patoo, Roya, tyra, rogam, ILinda,

Now I know what "bone pain" is in your hips (from the Neulasta injection).  Whoaaaa.  I haven't dropped off the boards, and I will not!,  I'm just resting a whole lot.

This is almost like a game here - figure out what the pain is.  Look at my notepad to see what medicine I took last and when.  Take medicine accordingly.  Do 15 minute chore.  Lie back down.  How do people go to work and do chemo at the same time?  I'm too concerned about the options, i.e., uh oh, is that burp?  Hmm, maybe a tummy cramp.  Nausea?  Dizziness?  Do I need to get to the bathroom and sit?  Headache?  Are my glasses dirty or is my vision blurry... no... sun sensitivity?  My favorite side effect of being woozed is waking up believing that the doorbell has been rung.  Praise God that the sound is pretty distinct, and I can tell when I've just imagined that I heard the doorbell.  (smile with me, please.  It is kind of funny... just a little bit.)

Next round, Cycle II, March 30th.

I am faithfully using my Carol's Daughter leave in conditioner, and I like the fragrance (Tui).  I'll try that Black Vanilla Bean next.

Love in Christ,

Sessna1

The post is gasping away...

Well, I'm the one who started it, so, I'll recap my journey/story.

The most important thing I have thus far learned about acquiring a wig?

YOU CANNOT GET YOUR MONEY BACK FOR ANY REASON>  ALL SALES ARE FINAL.

Do NOT let the store clerk put your wig in a box/bag to send it home.  Have it on a Styrofoam head in your hand with a plastic bag over it as you leave the store.  Make sure they give you what you have paid for because

A good wig has no problem costing you upwards of $300.00.

Get your wig as soon as possible because you'll need to be clear headed (not upset) while choosing it.  Do not buy when you are stressed out.  Do not buy if you feel uncomfortable in the store.  Do not buy if you can't stop crying.  Leave.  Get a best friend, return later, or choose a different shop with a better vibe.  Cute little pin curls take a lot of not so cute little maintenance.

HMOs generally won't pay for a Cranial Prosthesis (medical billing jargon for wig).  Your doctor must write a prescription for you, just like for medication.  Blue Shield/Blue Cross are currently rumored to be the best paying for a Cranial Prosthesis (... medical billing jargon for wig).  No one in medical billing will reimburse you any funds for a "wig."  Wigs are not medically necessary.

Invest in a Antibacterial Wig Cap, or two ... available at headcovers.com.  More on them later.  I bought a comfy grip, but haven't used it yet.

If your current hairstylist is not a sharp cookie, you're gonna need someone who is.  It is hard to talk to someone about losing your hair and the steps you'll take.

Please read the previous posts in this subject.

First, your head starts to get itchy in ways that it didn't before.  That's weird.

I think that before we start the first cycle of treatment that we need to begin covering our hair with either a wig or a hat.  Shield the hair faithfully from the sun.  When it comes back in... 6 months - a year from now... many complain that it is dry.  Massage your scalp with the pads of your fingers, never use your fingernails.

Sometimes the scalp tries to repair damage to it (like when a pressing comb gets too close) and makes these clear little sores that take strands of hair out with them.  You wonder what they are.  I've never seen many, but it reminds me of the water part of a white head after it has headed off.  It's like a tiny, clear, scab.  You wonder if a bug bit your head somewhere.  Alas, no.

Some say that you can get little bumps on your scalp, also.

It is very hard by day 14 not to note that your hair is "excessively shedding."  By day 23-24, you can make a pretty good faux hairball out of your own hair.  Use a rubber saber tooth (two teeth pick comb) gently.  Do not brush your hair.  The follicles are letting go at the root.

You don't believe me?  Ahem.  Tug on a hair or three "down there."  See how easily it came out w/o pain?  When you pluck a wayward eyelash or eyebrow, it doesn't hurt much, if at all.  The hair is letting go beneath the skin, people.  No way to stop it from doing so in a reaction tot he chemicals being utilized to extend/save your life. 

Clean it out of the sink with a paper towel.  Don't waste money on drain cleaner.

Don't treat your hair like you used to.  It's not strong enough for that during treatment or a good 6 months after.  Be gentle, like it's your baby's hair.

You need to assess your choice well before handing anyone any money for a wig.

How much time do you have to dedicate to wig care?  How much money?  Any community support or programs in your medical facility/plan?  Mentor program at the local big hospital?'

It so helps to talk with someone who has climbed the mountain successfully before you...

How much time do you have to dedicate to wig care?  How much money?

Oh - I said that before.  Because, it bears repeating.

You'll need to have a place to keep your wig away from family pets - especially cats.  All they see is a furry creature to taunt.

Carol's Daughter makes a line of hair products that work and smell delightfully delicious.  Very gentle.

Moisturize your face after cleaning it daily.  Okay.  After you clean your face daily, use a good moisturizer like from Fashion Fair (you ARE worth it).  Don't let your complexion dry out.  Use cotton balls and bottled water to be gentle to your face after removing makeup and before applying moisturizer.

Drink water, drink water, drink water.  Flush out toxins that your body doesn't need.

Be kind to yourself.   You will have good days and not so good days.  Do brain stretches like crossword puzzles or Sudoku puzzles or something that taxes your reasoning skills.  There are different levels for puzzles, there is a level for all of us if we look for it.

If you believe in God, talk with Him as often as you are moved to do so.  If you do or do not, find someone you can confide in to talk to who is wise.  This is not a journey to make alone and without support.  It is too scary.

headcovers.com has nice sleep hats.  Silk sleeping scarves are best, but your head might get too cold without a cotton cap.  The cute little classic baseball hat (BC-299) fits a little too tight if there is hair left on your head.

Love in Christ,

Sessna1

Dear Sis. in Christ,

My scalp was itchy, so I broke out the Carol's Daughter products and washed my thinning hair.

I thought - hmm.  If I was an artist, I'd be thinking about how to film this.  I had the following thought.

Have you seen a movie directed by Henry Jaglom called "Eating" in 1990?   It has Candice Bergen's Mom in it, Frances Bergen.   She was quite the looker in her day. 

Okay. I was thinking there should be a movie called "The Chemotherapy Museum."

A frank depiction of the diagnosis, the decisions, the frustrations, the cocktail, the side effects (I know, SEs), etc.  It is told by six women who are docents in The Chemotherapy Museum.

At the end of the film, all six groups meet up at the end of the tour.

One docent announces, "I can't speak for what happened to all of the women you have seen and heard here today, as no life is ever lived out within a museum, and no life should end there.  All I can speak for are those who have gone on to fight five - ten years out or more, like her...

And then the next docent says, "and her,"  and the next until all six are pointing at each other and you realize they were six of the women depicted within the museum.  Their personal story is part of the movie.  To work in the museum, you must have been "through it already."

Love in Christ,

Sessna1