Wednesday, October 10, 2012

Hair Loss (aka Alopecia) and Wigs


I'm no country music expert, but there is a country song that makes me howl absolutely every time I hear it.  It's called:  "Trashy Women" by Jerry Jeff Walker and Chris Wall.

And this is my favorite stanza:

"You shoulda seen the looks on the faces of my Dad and Mom
When I showed up at the door with a date for the senior prom.

They said, "Pardon us, son, but that ain't no kid;
That's a cocktail waitress in a Dolly Parton wig".

I said, "I know it dad ain't she cool?,
That's the kind I dig."


Dolly Parton wig, Raquel Welch wig, Eva Gabor wig, Beverly Johnson wig.  What do these ladies all have in common?   For better or worse, they have been in the wig business.



 














Let's talk hair loss and wigs.  The medical term for hair loss is "Alopecia".  I believe the Latin variation of the word Alopecia translates into something like:  "Crap, my hair is falling out.  Where are my Kleenex?  I want my pre-cancer life back...NOW." 
 
Hair loss is the number one question we get asked about and usually the very first question we hear when we start telling patients about chemotherapy.  Rightfully so.  You dig your hair and you have become accustomed to having it on top of your head.
 
I have cut and pasted some of what is written below from actual emails to patients about this topic, so if you are a patient of mine, you might have heard these words before, so please forgive.
 
A quick review from an earlier posting....

The good news: chemo kills rapidly dividing cells. Cancer cells are rapidly dividing cells. They are big, unorganized, not shaped like normal cells and they proliferate like rabbits. They grow fast and out of control. So, chemotherapy kills cancer cells.....good, that is our goal.

The bad news: chemo kills rapidly dividing cells. There are some healthy "normal" cells that also come under the "rapidly dividing" category. Your white blood cells, red blood cells, platelets in the bone marrow. Also your hair follicles, the lining of your mouth, throat, GI tract. These are all rapidly dividing cells. Chemo kills these too. On the positive side, new cells are always being produced. On the negative side of things, the chemo killing off your healthy rapidly dividing cells are why you experience side effects like hair loss, mouth and throat sores, nausea, vomiting, diarrhea. Until the reinforcement new cells arrive, you have to deal with the side effects (your doctors and nurses will tell you what you can do to tolerate most of these side effects).

If you are a breast cancer patient getting Adriamycin, hair loss usually starts right before your second cycle of chemo (when or if your hair comes out depends on the type of chemo drugs given).  Some chemotherapy drugs will not cause hair loss.  Many do.  Usually you start to feel tingling on top of your head, or your scalp feels more sensitive to touch and/or sore.  Then the hair loss starts.
 
Most women want to get wig procurement done asap.  Everyone wants to get the wig in place and ready for when the first hair starts falling out. The first person I would call would be your hairdresser. See if your hairdresser has any suggestions for wig shops.

We usually suggest that you cut your hair or go a little shorter if you have long hair...like a Ginnifer Goodwin kind of length.  This is because hair tends to come out in clumps.  My patients have told me that this is what they find most depressing. They see straggly long hair clumps in their shower or on their clothes or it has fallen off into their food. With the shorter hair, they have told me it is less traumatic.  It looks better than to have long thin strands with spots that are bald.  Some patients just shave their heads right off the bat and feel liberated in a way, but most of my patients like to ease into it a bit with the short look first. It is a personal choice and everyone is different.


Wigs: Yes, you need a prescription.  Your doctor or NP has to write a prescription for a "cranial or hair prosthesis" due to alopecia due to chemotherapy and it will be covered. Don't worry...they know what to write. You don't need the prescription to just go try on wigs.  But, you will need the prescription to either fax or bring to the wig place if you are ready to order the wig.



Definitely bring a friend that you trust with you. You are going to want their opinion on how things look. I would say where you get the wig doesn't matter as much as making sure you take it to your hairdresser for shaping after you buy it. The shaping or layering makes it look more real. This is because the shape is never really right when you first see it out of the box. It always looks a little too thick on top. Your hairdresser can style it for you. I've seen some ladies get creative with $40 wigs and you would never know it was a wig. And I have seen some $600 wigs that just look like bad wigs.

Many of my ladies get their "expensive" wig and then play around with a few "cheaper" versions/styles too. On the positive side....if you ever thought about going a different color or style, now is the time to try it out!!!

Don't be afraid to ask other ladies in the waiting rooms at your cancer center if you see an awesome wig that you like. I can't tell you how many ladies have found good wig shops that way.

The good part of getting your wig at one of the medical facilities is that they are experienced with the whole insurance reimbursement part of it and will often bill your insurance company directly for you, saving you the hassle of trying to get reimbursement. Depending on what your health insurance is, you should get some money toward it or complete coverage for one wig. 


Also make sure that you get the "cap" that goes under the wig, as a lot of my women say the wig can get scratchy on your head without it. There is also kind of a gel headband that can help hold your wig in place.


All of this being said,  most of my patients take off their wigs the minute they get home. Get a few cotton scarves or caps for around the house for comfort. Silk can tend to slide on your head. Cotton is soft, tends to stay in place better and can absorb perspiration if your head gets too hot.

 
 
Here is the link for the wig catalog TLC which is basically connected with American Cancer Society.  These are reasonably priced wigs and headwear.
http://www.tlcdirect.org/Wigs-for-Cancer-and-Chemotherapy-Patients-TLC-Wig-Collection-American-Cancer-Society-TLC-Direct

Says it is for "women of color" but basically looks nice for any brunette
http://www.tlcdirect.org/Beverly-Johnson-Wig-Collection-for-African-American-Women-Cancer-Wigs-American-Cancer-Society-TLC-Direct?shw=1


Also some of my ladies prefer to wear a ballcap or hat and just velcro a "strip of hair" along the inside lining.  The hair strip has velcro on the top and the hat has velcro on it too. So basically your head can breathe in a nice soft hat, but you can have the look of bangs if you want to.  It doesn't look as stark as a baseball cap alone.  

http://www.tlcdirect.org/Straight-Add-a-Bang.html?did=67

I haven't known anyone to try these, but they are based on the same principle as the bangs above.  They allow the top of your head to "breathe" but still make you look like you have hair.  If you lose your hat, you are apt to look like a Benedictine Monk, so maybe not the best on a windy day : )

http://www.tlcdirect.org/Hats-with-Hair-for-Cancer-and-Chemotherapy-Patients-Hair-for-Hats-American-Cancer-Society-TLC-Direct

Here are just some nice soft caps. Some may not win any fashion awards, but there are also some that look soft and comfy and are cute too.

http://www.tlcdirect.org/Fall-Hats-and-Winter-Hats-for-Women-Cancer-and-Chemotherapy-Patients-American-Cancer-Society-TLC-Direct?shw=1

http://www.tlcdirect.org/Turbans-and-headwraps-for-Cancer-and-Chemotherapy-Patients-American-Cancer-Society-TLC-Direct?shw=1



Some Wig Shop Suggestions In Massachusetts:

Many of my ladies LOVED this place:

New England Hair Illusions        
Pondview Square Unit 16
Tyngsboro, MA 01879
They said Deborah at NE Hair Illusions was GREAT.

 

Carolyn's Wigs

32A Pleasant St, Wakefield, MA 01880

 

Nick Georges Hair Studio

(978) 750-8200

130 Sylvan St Ste 5
Danvers, MA 01923
 
 
Friend's Boutique
44 Binney Street
Boston MA 02115
The scarves and hats there are pricey. But some patients have said that the wig costs are not as high as the other stuff they sell there.

 
PK Walsh
75 2nd Ave # 430, Needham Heights, MA 02494
(781) 444-4414
Sheer Sensation
1980 Acushnet Ave
New Bedford, MA
02745

 
Joann Dwelly
930A American Legion Highway
Westport MA 02790
Here's a business that comes right to your home for a fitting.  I have never known anyone to try it, but if you try it, please let me know what you think!
Windows of Hope Beth Israel Deaconess Medical Center
Windows of Hope is located on the 9th floor of the Carl J. Shapiro Clinical Center and is open Mondays - Fridays from 9:30 a.m. to 5 p.m. or by appointment. Make an Appointment: 617-667-1899


 
MGH Images BoutiqueYawkey Center for Outpatient Care
Suite 9B
Boston, MA 02114
Phone:
617-726-3211
Fax: 617-643-1121


 
Images at Northshore 102 Endicott Street
Room C 168
Danvers, Ma. 01923
Phone:
978-882-6365
Fax: 978-882-6516
By appointment only



The American Cancer Society touts several wigbanks in Massachusetts.  ACS provides some free wigs to designated ACS wigbank salons.

Here is a listing as of 10/10/12, but keep in mind, I have found that sometimes the ACS wigbank info is not always current or that useful.  I would suggest calling the 800 227 2345 number if you are in doubt:

Hair Kingdom - Wigs - Free or Reduced
Adobe® Acrobat® PDFSomerville High School - Wigs - Free or Reduced
Adobe® Acrobat® PDFMinuteman Regional High School - Wigs - Free or Reduced
Adobe® Acrobat® PDFBiyoshi - Wigs - Free or Reduced
Adobe® Acrobat® PDFBoston Medical Center - Cancer Resource Center
Adobe® Acrobat® PDFMasquerade Wig Boutique - Wigs - Free or Reduced
Adobe® Acrobat® PDFMargo's Too - Wigs - Free or Reduced


I read this article about an ACS wigbank and called the very nice Michelle who said to call her before you come in at:  617 738 1184 and ask what they have in stock and make an appt. FREE.

http://www.wickedlocal.com/brookline/news/x353265730/Brookline-hair-salon-helps-cancer-patients-through-American-Cancer-Society-Wig-Bank?zc_p=1

http://www.biyoshisalon.com/


Try to remember this.  When chemo is over, you will get your hair back.  You will get your hair back.  You will get your hair back.  Your hair may come back a different texture, color or curlier, but you will get it back.   Your baldness is temporary. 
 
 
One final note....and it's just my opinion, but if Jaclyn Smith wigs look this bad on Jaclyn Smith, there is no hope that they are going to look decent on the rest of us!!!  
http://www.paulayoung.com/category/wigs/jaclyn+smith+wigs.do?

A8034


Hope this helps!

Sunday, October 7, 2012

Nurses as Advocates...Love Your Nurse!!

They take great care of you.  They also rub your back when you need it, make you a peanut butter sandwich at 2 a.m., get you to laugh, let you cry on their shoulder, are quiet when you need them to be, know just the right trick to get your portacath to work, they run interference with that surly doctor (or complement the great doctor!).  They know things about you that you have never told anyone else.  They have been your champion since the first days of chemo. They make your clinic day or hospital stay bearable.  They help you live.  They help you when it is time to die. You rely on them.  You trust them.  You love them (and they love you too!!).  They are your NURSES!!!
Here's a shout out to all of the AMAZING nurses I have worked with in the past 32 years.  I'm not supposed to tell you where I work, so here's a vague shout out to the nurses I love and respect the most:  The nurses of 7 East and the nurses of our chemo clinic!!!

To the survivors out there....I hope that you all had the experience of having that one special nurse (or hopefully many special nurses!!) who helped you get through your rough times.

If you did have that experience, please consider nominating that nurse for a CURE Magazine Extraordinary Healer Award.   Believe me, even if she doesn't "win",  the nomination will sincerely touch your nurse's heart.

I was grateful to be nominated one year (so no, you can't nominate me again and I am not trolling for votes!!  : )).  But something really struck me that year.  CURE is a national magazine. There were only about 100 nurses nominated across the country.  I was shocked.   I know at least 100 nurses in my own hospital worthy of this award.

So, I am on a personal mission.  A lot of our patients don't have computers to do online applications to tell about their nurse.  I am starting a little campaign in our chemo clinic.  If the patient fills out their essay on paper, I will type it up and submit it online for them.  I am going to put up posters to remind patients of this contest.  Hey...the winning essay author patient/survivor wins a trip too!!

I want to see WAY more oncology nurses nominated for this award!!!!!!!  They are out there working hard everyday!!

 http://www.curetoday.com/index.cfm/fuseaction/magazine.extraordinaryHealersLanding?contest=3
 From CURE:  "About the Contest
Tell CURE about your nurse, and you both could win a trip to Washington D.C.!
Do you know an extraordinary oncology nurse whose compassion, expertise and helpfulness made all the difference in your or your loved one's cancer journey? CURE wants to know!
For the seventh year in a row, CURE is giving you a unique opportunity to honor an oncology nurse through the 2013 Extraordinary Healer Award for Oncology Nursing! Now through March 20, 2013, CURE will accept essay nominations from patients, survivors, caregivers and peers detailing the extraordinary skills that a special oncology nurse has exhibited.
Three nurse finalists and the individuals who nominated them by essay, plus one guest each, will receive round-trip airfare and two-night accommodations in Washington D.C., where they will be honored at a reception to be held in conjunction with the Oncology Nursing Society's 38th Annual Congress, on April 15, 2013. One nurse will be presented with the 2013 Extraordinary Healer Award for Oncology Nursing, and will also receive a special gift in recognition of his or her service to cancer patients and survivors.
Send us your essay nomination before March 20, 2013 for the chance to join CURE in honoring your oncology nurse!"

A bad nurse or even just an "okay" nurse can make your hospital stay intolerable.  A great nurse can make such a difference in your whole cancer experience.

Here is one of my fabulous nurses that I had when I had surgery this summer.  She was wonderful, full of kindness and happiness, and she had the world's greatest name.....ROSEBUD.  I kid you not!!  She was just what you would want for a nurse.  Thank you Rosebud!!  You can best believe that I will be nominating Rosebud for the CURE extraordinary healer award.




My other fabulous nurse?  I don't have a picture because I met her in the recovery room and didn't have my phone with me to take pix.  Her name?  Jane Thompson of Ellison 3 PACU.  When I met Jane, I absolutely knew that I was going to be okay.  We had a moment that I will absolutely never forget.  Thank you Jane!!!  Your mother (a nurse) would be SO proud of the amazing nurse that you are!!!

Here's to the NURSES WHO ROCK and the patients they LOVE!!!!!!!!!!!
  
Major kudos to this young nurse that gets it.  Use any and all tactics that you need to, to connect with a patient.
http://www.timesunion.com/local/article/Grumpy-patient-tender-nurse-1357686.php



This is just a shout out for an awesome blog devoted just to cheesy vintage "nurse" romance trashy novels whose cover pix I have copied below!!  Hysterical!!