De Plane!!! De Plane!!

Question:  Tattoo or Micropigmentation??

Answers:

Photo #1: Tattoo
Photo #2: Cheap joke
Photo #3: Micropigmentation
Photo #4: Micropigmentation
Photo #5: Micropigmentation                                          
(photos 3 and 4 from: http://www.permanentcosmeticsbyjamilla.com/gallery)

A couple of years ago, my beloved patient (and friend!) Jacki told me she was going to get her eyebrows tattooed, but not really tattooed.  WHAT???  I was immediately wary and drilled her with 8 million questions about the person doing it, the cleanliness of the place etc.  Jacki is a wise woman and allowed me to tag along with her on her second appointment to spare herself from getting the third degree by me at a later date.

Jacki is a 14 year breast cancer survivor who lost some of her eyebrows during chemo and some when she was on an Aromatase Inhibitor (Arimidex, Aromasin, Femara, etc).   Aromatase Inhibitors (AI's) are the hormonal therapy pills that you take after your chemo is over to inhibit the amount of estrogen in your body (there will be another post in the future to discuss Tamoxifen and Aromatase Inhibitors).  One of the side effects of some of the AI's is hair thinning.

After a lot of thought (many years after her cancer treatment was over and her blood counts were stable), Jacki decided to get her eyebrows tattooed.  On the web, there are a lot of different names for this:  "permanent makeup, permanent cosmetics, micropigmentation".  By all definitions they are all some type of "tattooing", albeit there are different techniques, styles and levels of expertise involved apparently.  The woman who Jacki chose to do this procedure was Jamilla El-Shafei.

I can't speak with any authority about what micropigmentation entails.  Jamilla told me that she uses a different instrument than the one that tattoo artists use.  On her website, she describes Micropigmentation (or Permanent Cosmetics) as "a method of implanting medical-grade, hypo-allergenic colored pigments in the delicate tissues of the face. Specialized instruments are used to apply the pigment to the face".

Another website calls micropigmentation:  "the process of inserting colored pigments just beneath the skin's surface.  The insertion of color reaches only the papillary layer of the dermis."
http://www.lauralewispc.com/id7.html 

But back to Jamilla...

I must tell you that despite Jacki telling me how great Jamilla was and how clean her place was, I was still suspicious.  I'm a nurse and have seen some botched "tattoos" in my career.  I've seen a lot of really bad and undecipherable ink tattoos on every type of patient and every body part imaginable.  I swear, every veteran of WWII had a tattoo.  I promise you that those tattoos 60+ years after the fact, don't look so great. : )  Most nurses have heard a few horror stories about sketchy tattoo artists causing infections, Hepatitis C and worse.  So, I was skeptical.

We walked into Jamilla's beautiful office in Portsmouth, NH.  I call it an office, but it is really a beautifully restored New England home and her office is on the first level.  Her waiting room looks like something out of "House Beautiful".

Because I am a nurse, I also am aware of places that perform "cosmetic or plastic surgery" that look all fancy-schmancy and upscale, but aren't up to snuff medically speaking.  So, while I thought her waiting area was lovely (and it smelled FABULOUS!!!), I still wasn't sold.

Several volumes of photos of her work sit on the coffee table of her waiting area.  I LOVE this!!  Obviously she is not going to show pictures of crappy work out in her waiting area, but to see actual (deidentified) photos of her work is really helpful.  She does amazing work!!  Client testimonials are also there.  That is exactly what a new client wants to see....examples of her work.

With Jacki's permission, Jamilla allowed me to watch her work.  She also answered many of my questions throughout the procedure.

I also loved that she had made sure that Jacki had used her EMLA cream (which is a prescription local anesthetic cream that we use in the chemotherapy world on port-a-caths prior to sticking them with a large bore needle).

My final grade of Jamilla, her working environment and Jacki's eyebrows?

1)  A+ for spotless, sanitary, aesthetically beautiful, obvious use of clean techniques and good handwashing.  Also credentialed.  She is board certified.  She spent time training in hospitals with plastic surgery teams so she is well versed in cleanliness, sterile technique, proper cleaning and sterilization of instruments and the usage of sterile one time needles etc to do the actual work.  She also gets referrals from plastic surgeons.  Guess what?  No plastic surgeon is going to risk having their hard work screwed up by a bad "tattoo" person.  It would make them look bad.

2) A+ for providing photos of her work to show prospective clients.   I loved the way she described to Jacki exactly what the goal of her visit was and what they were going to accomplish that day.  She also told her what they wouldn't be able to accomplish in that visit.  She laid out the plan of what would happen in the final visit before we left.  She also told her "it's going to get very dark, and you will not like it, but in a week it will fade" (or something to that effect).  That is exactly what happened and Jacki was prepared for it. She also gave good instructions for how to care for it at home to prevent infection.

3) A+ for her artistry.  Why do I keep yapping about how beautiful the surroundings were?  Well, Jamilla is an artist.  No, she really is an artist!  She paints and used to work as an interior designer if I remember her story correctly.  This is important because in her micropigmentation work, it is her eye for color, detail and artistry that makes the final product look so good.  She speaks of using her flair as an artist to be able to select different colors for different skin tones for the best outcome.

In some of the books of photos of clients, you can see that a lot of her work is trying to "fix" the botched up work of other "tattoo" artists or other permanent cosmetics practitioners.  I think her experience as an artist is evident.  Her canvas in this case is human skin.

I have seen a couple of women with badly tattooed eyebrows.  Yikes.  The difference between that and the very subtle brush strokes of Jamilla's work is like night and day.

4)  A+ for experience.  She's been practicing since 1994.  In my world (the medical world), the more cases you do the better you get.  She has the long term experience I would be looking for if I were a potential client.

5) A+ and extra credit for her compassion.  She gives discounts to cancer survivors and those with alopecia (hair loss due to medical reasons other than chemotherapy).  I have been blathering on about eyebrows because that is what Jacki had done.  Jamilla also does post-mastectomy areolar (nipple) work and scar "camouflage".  Of course she sees a lot of clients that do not have any medical issues.  These are women that just want to look better.  She loves those clients.

But, ask her about her work with cancer survivors, and you can immediately sense her joy when she speaks about helping them.  She knows that she makes them feel better about themselves and more confident about their appearance.  She says that those clients give her the most satisfaction, and that is one of the major reasons why she loves her job so much.   BAM!!! GAME OVER.  That's the answer a nurse likes to hear.  Jamilla, YOU ROCK!!!  Thank you for all of the great work you do for cancer survivors.  I was a skeptical nurse, and now I'm a fan!!

6) A+ for Jacki's eyebrows!  She looks great and received a lot of compliments.  Her eyebrows were a hot topic of discussion in our chemo clinic.....very favorable reviews by all!!!

See Jamilla's website below. She has a lot of great before and after pictures.  Make sure you check out her photos of women who came to her with botched jobs from someplace else.

Jamilla sees clients in Portsmouth, NH and at The Boston Center on Comm. Ave. in Boston.

Jamilla has a list with her prices for the services she provides.  Jacki told me that it cost her approximately $500 for her 3 sessions.  She is "extremely happy with the results".  When I asked her how painful it was, she said "it's not painful it just feels like electrostimulation at the brow area".  She is going back for an annual touch up soon.  I will ask her to take a photo afterwards (like the one she gave me yesterday), and will post it here again so you can see what a touch up does.  She says that it fades a little over time.  Apparently you can go back every year or couple of years to freshen it up.

I know I asked Jamilla if the nipple work was covered by insurance, but I can't remember if it was covered (it should be!!!).  I do know that she emphasized that she would try to work with cancer survivors if there were financial issues preventing them from having this final piece of their reconstruction completed.

http://www.permanentcosmeticsbyjamilla.com/

http://www.bostoncentercosmeticsurgery.com/

Jamilla El-Shafei

While she states that she has clients in from all over the world, obviously most of us can't afford to do that.  If you don't live in New England, see the bottom of this post for some tips from The Cleveland Clinic on what to look for in a professional micropigmentation practitioner.

One more thing..... MRI's and Tattoos:  If you are undergoing an MRI test (magnetic resonance imaging) you should let the tech know that you have had a "tattoo".  This is because some ink or pigments contain metal (Iron oxide) and MRI machines are like a big high powered magnets.  No, the tattoo doesn't explode, but the area tattooed can heat up and in rare cases burn at the tattoo site.  Most importantly the metal can interfere with the images, affecting the results of your MRI.

It would be a good idea to ask your micropigmentation practitioner if the skin pigments used contained iron oxide.  Looking at the literature on the web it looks like this is a bigger issue for older tattoos...tattoos that were done more than 20 years ago.  Apparently it is not as big of an issue with some of the pigments they use now.  But, if you have an area where a lot of black pigment was used, this contains more iron oxide (a metal). 

When we order an MRI for a patient, there is a long checklist of all the things that may or may not either interfere with the results of the MRI or would preclude you from having an MRI for safety reasons.  Whether you have had a tattoo is definitely one of the questions asked.  Having a tattoo might not keep you from being able to get an MRI, but depending on the body part they are examining in relation to the area that was tattooed.

"MRI complications. Rarely, tattoos or permanent makeup may cause swelling or burning in the affected areas during magnetic resonance imaging (MRI) exams. In some cases — such as when a person with permanent eyeliner has an MRI of the eye — tattoo pigments may interfere with the quality of the image." http://www.mayoclinic.com/health/tattoos-and-piercings/MC00020

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http://my.clevelandclinic.org/services/micropigmentation/hic_micropigmentation.aspx

Per the Cleveland Clinic site:  Do your homework

"Be sure to find a doctor or specialist who has experience in this procedure. Before having the procedure, visit the doctor you have selected. What should you look for? Examine the office area for cleanliness and professionalism. Are there appropriate waste containers for proper disposal of medical products used during the procedure? Are supplies properly stored? If your initial visit is not in the actual room where the procedure will be performed, do not be afraid to ask to see the room and request a general tour of facilities. Be aggressive - this is your appearance".

"Some other questions to ask:

• May I see your credentials?
• May I see photos of your past work?
• If possible, may I contact a current or former patient?
• How long have you been practicing?
• What is your follow-up care policy?"

Young Survivors' Resources

Young Adult Cancer Survivors have a few different sets of challenges than their older counterparts.  We discussed  fertility issues and cancer on the last post (I should say that I discussed, you were forced to read my one sided discussion!!).

Some of the other issues that affect  YA's (as they are sometimes referred to): 

•  Education:  some young survivors have had to leave college or give up their dream of college when they were diagnosed with cancer.  With medical bills piling up many are forced to abort this dream, or put it on hold indefinitely.

• Dating:  it's hard enough to show your mastectomy scar to your husband of 35 years, but imagine that you are out there in the dating world with some of the physical scars of your cancer.  Plus sometimes it is hard to envision your own future, let alone meeting someone new and involving them in it.  Btw...I once got laughed out of a survivorship meeting when I suggested an online dating service for cancer survivors.  Well looky here....  http://www.cancermatch.com/  For this resource, I haven't had any patient of mine try it yet, so I can't vouch for it.  Just passing it along!  Here's another one that I saw in CURE magazine, but it looks like it is temporarily down  http://www.cisforcupid.com/  I will check back and will remove it if it is no longer a good site.

Also here is a dating site for those survivors who can't have sex because it is painful (some gynecological cancers), maybe some testicular cancer survivors.  Started by a woman who had stage IV cervical cancer. http://2date4love.com

• Finances:  usually if you are young,  you are working for peanuts in entry level jobs.  Most likely you are renting, haven't saved much of anything and have college loans or credit card debt on top of your medical bills. 

• Lack of any health insurance at all. 

• Loss of friendships/loss of your social network.  This happens to older cancer survivors too, but with young survivors, the support systems may not have been built up enough to help them through. Also, all their young and happening friends may not be able to handle something like a cancer diagnosis in a friend who is so young.

                                                    *************************

The SAMFund is a great organization that gives tangible financial assistance (aka money) in the form of grants (YA's can apply for grants every June).  The great thing is that you can request assistance with rent, bills, tuition costs, fertility costs etc.  There is also a social aspect to meet other young survivors at some of their events.  This is one of the few assistance programs that give REAL financial assistance to young survivors who apply. 


To be eligible for assistance you need to be: 

• between the ages of 17 and 35
• a U.S. citizen
• finished with your cancer treatment

So, it is not financial help during your treatment.  This fund is designed to provide assistance when you are getting on with your life after treatment. Finally a resource that delivers what it says it will some REAL help with funds for young survivors.  ROCK ON SAM FUND!! 

Samantha Eisenstein Watson is the director and co-founder of  The SAMFund.  I have spoken to her on the phone and emailed her a few times and she is absolutely delightful.  She is a two time cancer survivor that truly found her calling after her experiences with cancer.  Talk about inspirational and making a difference in this world.  Thank you Sam for all that you do for other young adult survivors!!!

If you want to donate to a great organization, here you go:  The SAMFund   http://www.thesamfund.org/

                                                ****************************

If you are a young survivor looking for scholarships to go back to school?  There are a LOT of scholarships for young cancer survivors or for children of cancer patients.  My advice?  Start surfing the net.  There are all kinds of scholarships that might be peculiar to the state where you live, what kind of cancer you have etc.  You have to hunt around a bit. These two came from stupidcancer.com below.


http://www.ulmanfund.org/University-Outreach/College-Scholarship-Program.aspx/


http://www.collegiatecancer.org/
                       
                                                *******************************

A great website for all things Young Survivor related is http://stupidcancer.com/.  It is the website for the "I'm Too Young for This Foundation" and they have a lot going on over there.

They have a radio show, webinars, blogs, posts, social networking and a ton of great links for young survivors.  I heard founder Matthew Zachary speak last year at the Stowe Weekend of Hope.  He was such a humorous and dynamic speaker that I blew off the workshop I had signed up for and stalked him at the young survivor workshop he was speaking at later that night.  

If SAMFund is about actual financial support, Stupidcancer.com is mostly about emotional support....networking, finding other young survivors who know how you feel, and links to great resources.  SO valuable!!  Pretty much all encompassing if you are a young survivor.


They sponsor a yearly event which sounds like a big convention for young survivors.  They have speakers, workshops all geared to them.  I am attending this year (not young and not a cancer survivor) as they let health professionals come too.  I am really stoked to check this out.  


Rates are reasonable for it and what better place to hold this event, but in VEGAS!!!

Another annual event in the Boston area is happening in March too.  The ninth annual Young Adult Cancer Conference in Boston, MA is being held on Saturday, March 24th from 8:30am to 3pm.  It's a day packed with workshops, networking and information. 


http://www.youngcancerconference.org/




Hope some of these help!!  Please pass on to any young survivors you know!!

-

Young Survivors-Fertility Issues

If you are a nurse, no matter how old and feeble minded you get, there are certain patients, certain situations that you have experienced in your career, that you will never forget.  Never.  I'm not just talking about the adorable and cute patients, or the ones you grow to love.  You will also remember the difficult patients, the ones with funny stories, the ones with sad stories, a certain smell, a certain feeling, all of the things that have taught you something somewhere along the way.

In this particular situation, I remember sitting with a lovely woman in her mid twenties who had an aggressive type of cancer.  She received her first round of chemo emergently in the hospital.  The large tumor mass in her chest (that was making it difficult for her to breathe) had started to shrink quickly after she received a dose of chemo.  I was meeting with her to discuss potential participation in a clinical trial now that she was feeling and breathing better.  I met her in our outpatient chemo clinic.

We sat together and reviewed the plethora of potential side effects that are listed in the consent form for the trial.  We talked about each side effect and the likelihood of it happening.  Then I would explain what we would try to do to help her get through certain side effects.  She was smart and asked great questions. Many of the side effects she had heard before from her doctor, prior to getting her first round of chemo up on the inpatient unit.   As we were nearing the end of the side effects discussion,  I got to the "reproductive risk" paragraph.  In one sentence I had to tell her that she needed to use appropriate contraception as the effects of chemotherapy on a fetus could be disastrous.  In the next sentence I had to tell her that the chemo that we were giving her to potentially save her life, could cause her to become irreversibly infertile.

This is always a hard thing to say, but it is especially hard to say this to a 25 year old whose whole life and dreams have been turned upside down in a 2 week period.  Usually when the medical oncologist sits down and explains the side effects of chemo, this issue is discussed.  So when it is my turn to discuss it with the patient, it still may be hurtful, but they have had a little time to process it.  I quickly learned from her reaction that it had not been discussed, or if it had been discussed, this was the first time she was really hearing it.

She was in shock.  And then she got angry. And then she cried and cried and cried.  She was absolutely heartbroken and who could blame her?

She went on to get pretty aggressive treatment.  I grew to truly admire her and love her.  Many years later I am happy to report that she is alive and well and healthy today.

BUT....later that day while driving home, I was like WTF!!  That was the day that it really knocked me over the head, that young survivors have different needs than our older survivors.  After attending many conferences and seminars over the years, I have heard many in our community discuss the same thing.  For years our #1 focus has been to save the life of the cancer patient and deal with long term side effects that arise in life later.  Now we know that we need to aim for cure AND quality of life for years to come for our cancer survivors.  We need to do a better job as health professionals for our young survivors.  Survivorship has definitely become an important buzz word in the cancer world in the past few years.

In my opinion, the best think about Lance Armstrong's book, "It's Not About the Bike; My Journey Back to Life" is where he discusses sperm banking.  He has horrific disease and he is about to be treated with a stem cell transplant.  His mother insists that he banks his sperm.  It's been years since I read the book, but if I remember correctly, his mother hears another patient talking about it and insists that Lance be allowed to bank his sperm.  This one well timed intervention allows Lance to become a father later in life.  http://www.amazon.com/Its-Not-About-Bike-Journey/dp/0425179613/ref=sr_1_1?ie=UTF8&qid=1329370811&sr=8-1

The sad truth however is that Lance must have had the money to do this, or he had a fabulous health insurance that would cover it, as many of the patients that I meet do not have this as an option simply because they can't afford it.  Here's another ugly secret, there aren't a lot of health insurance companies that cover this for cancer patients.  So while not too many people come right out and say it this way, the very disgusting fact is that if you aren't lucky enough to have the funds to pay for it, you may be out of luck later in life when you want to start a family.

Lance and his wife at the time started FertileHope.  It gives some great information about the fertility issues that affect young cancer survivors.  It also offers some links and leads on where to seek help.  You can also apply for some financial assistance at this site.  It's been awhile since I have had anyone apply for this, but I think you can get some leads on discounted fees and rates, but the assistance used to be minimal.  If you have used their site recently, please update me!!

Bottom line:  it is cheaper for men.  Costs more for women as they have to take hormonal injections to stimulate the ovaries and those are pricey.  Also it is more complicated than what guys have to do.

Men:  fees associated with sperm banking plus a yearly "storage" cost to freeze.
Women:  cost of hormonal injections, egg extraction, fertilization if it's embryo,  processing, freezing and yearly storage costs.

Learn all about the processes for men and women and see what they have to offer for financial discounts:

www.fertilehope.org

http://myoncofertility.org/patients

http://www.fertilehope.org/financial-assistance/index.cfm

http://www.livestrong.com/article/31898-sperm-banks-work/

http://www.livestrong.com/ivf-donor-eggs/

If you are dealing with insurance companies, apparently there is a loophole that they use to weasel out of paying for cancer patients' fertility costs.  Read more about it at Fertile Hope.  Also, THE number one thing to remember when dealing with insurance companies.....APPEAL, APPEAL, APPEAL!!   This is of course hard to do when you are trying to preserve your energy for more important things during cancer treatment.

There is one other fund where you can apply for funds to assist you with fertility costs.  The Sam Fund.  It is an AWESOME fund for young survivors.  Application for financial assistance happens once a year in June only. You can apply for assistance for rent, to help pay tuition costs, fertility costs, medical costs, necessities etc.

http://www.thesamfund.org/pages/grants.html


If you are looking for a really good and honest charitable foundation to donate to that actually helps young cancer survivors, this is it.  More about this and a few other resources for young survivors in my next post.


Hope this helps!

Definitely Not for Everyone

Let's get it right out there.  This book is ABSOLUTELY not for everyone.  I really have to know a patient and their sense of humor before I recommend this book to them.  But for some of my patients, especially my male patients in their 40's and 50's, this has been the one "cancer" book that reaches them and helps them.

I've always felt that you have to find "whatever works" for each particular patient.  One size definitely does not fit all.  If raunchy humor is what it takes to connect with a patient, I will throw every ounce of "professionalism" away to connect with them. 

Here's my disclaimer....I grew up with 2 brothers.  Enough said?  In your dreams!!  I have the best brothers a girl could ask for.  I would take a bullet for either one of them.  Please don't tell them that, as it is my job as their sister to insult them, tease them, mock them, and torture them, just as they have done to me all of my life!!!

Why am I telling you this?  Because one of the best gifts my brothers (and my wonderful father) helped me to develop is my sense of humor.  I have a "guy's" sense of humor.  Everyone in our family has a "warped" or "sick" sense of humor thanks to my Dad.  When we all get together, there is constant ribbing, insults and laughter, but there is always an undercurrent of deep love.  

If you are a person who has a sense of humor that is a little "off", you know that when you find someone else who is also a little "off", it is a delightful thing.  It is like..."game on!!!"  Nothing delights me more than when I meet a new patient and discover in the course of a conversation that they are also a little "off".  I realize that this will be the start of a great relationship.

These are the folks who will love this book...people with a warped sense of humor.   If you love Howard Stern, Jimmy Kimmel, Artie Lange, Jimmy Fallon, Steve Martin, Chris Rock or South Park, then read this book.  

    

I loved this book.  Schimmel prior to his diagnosis with Non Hodgkins Lymphoma, was a very raunchy   comedian.  I can't say that I was crazy about him, but I always found him to be an interesting guest when I heard him on Howard Stern.  His personal life was a total disaster.  He was pretty screwed up.  When I heard him promoting this book about his experience with cancer and his subsequent treatment, I knew I had to check it out.  Why?  Because if you have read more than a few books about cancer, there is usually not a lot of humor to be found.  I couldn't wait to see what Schimmel's take on the cancer experience was. 

Here's what I know.  If you have an offbeat sense of humor before you are diagnosed with cancer, then you will continue to find humor even in the darkest of places....a cancer diagnosis.  That is what Schimmel has done in this book.  He says what people might be thinking, but not verbalizing.  When do you need a sense of humor the most?  In dark and challenging times, to help you through it.

If "F-bombs" and "guy" type humor upset you, then you shouldn't read this book.  If you are disgusted by Schimmel's comments in an early chapter about his fantasy of wanting to "bang" his chemo nurse, then quickly put this book down.  You will find it to be offensive and upsetting.  If you set out to read this book and can only focus on the raunchy humor or "vulgarity" then you will miss the ultimately beautiful message in this book.  That's right...beautiful.  There's the surprise.  Robert Schimmel's personal life may be beyond crazy.  But he fights for his crazy life and he triumphs.  His humor is incredibly irreverent.  But he is touched by his fellow cancer survivors that he meets on his journey, and his humor touches them.  

What I thought was going to just be a lot of "funny" observations about his experience with cancer, ended up   with a beautiful ending.  This book made me laugh out loud. It also had me sobbing at the end. 

After this book came out, Schimmel found himself with a new following when he went on the comedy club circuit.  At the end of every performance he would connect with the cancer survivors who came to see him.  He would stay and talk with them afterwards.  He had found a new purpose.  He helped a lot of people with this book, especially men.  

Does this mean Schimmel became an angel?  No.  Reports several years later revealed that his crazy life was still pretty crazy.  Sadly, he died a few years ago.  No, it was not his cancer that was the cause.  He was a passenger in a car which got into a motor vehicle accident.  He sustained fatal injuries.

He was human.  He had flaws.  He also had a great sense of humor.  At the end of the day, he gave something back by sharing his talents with others, which in turn enriched his own life.  He gave a great gift to many cancer survivors by writing this book. 

http://www.amazon.com/Cancer-Five-Dollars-chemo-included/dp/B002U0KOO0/ref=sr_1_1?ie=UTF8&qid=1327188600&sr=8-1

Metal Mouth

Many patients getting chemotherapy complain of taste changes (and some experience changes in their sense of smell too).  The official medical name is called Dysgeusia, but no one really calls it this.  We call it taste disturbance, alteration in taste or "metal mouth".  One of my patients told me the taste was "like chewing on  a ball of aluminum foil".

Chemotherapy affects the rapidly dividing cells the most.  Think of these places as the spots with mucous membranes or gentle linings/delicate skin.  The mouth, the hair follicles, the throat, your whole digestive tract, the bone marrow...these are the places that are most sensitive to chemotherapy.  That is why with some chemotherapy drugs-your hair falls out, you get mouth sores, or throat sores, or diarrhea, and your blood counts drop (because your bone marrow is affected).  Discouraging to hear, but remember, most of these side effects are temporary.

They don't know exactly why some cancer patients lose their taste,  but it makes sense that if you can get mouth sores on the gentle lining of your mouth, it makes sense that the delicate tissue of your tongue would be affected too.  Your taste buds are on your tongue and so your taste can be affected.

Some patients complain of a metal taste in their mouths.  Sometimes it lasts for a few days each cycle of chemo and sometimes it hangs around all the time.  Some patients only get it when the chemo is infusing or when the port-a-cath is being flushed.

Also I hear complaints of a "pasty taste" or that their taste is "just not right".   Foods that they have always loved, just don't seem to taste right.

The bad news?  There is no 100% antidote for this.  When chemo is over (or within a month or so after it is over), this will go away.  That is hardly a consolation when you have 4 more months of chemotherapy in your future.

The good news?  Here are a few tips that might help you.  Bottom line:  it's trial and error on your part to see what works for you, as everyone is different.

Some things that may help you with the metal taste:

Use plastic utensils instead  It may seem silly but for a lot of patients these really help.  Carry spares in your purse.

Glass vs Metal Cookware (pyrex, glass casserole dishes etc)

Use mints, gum, hard candies.  Try the sharp or more "sour" tasting candies.  The ones with "pucker power" tend to be more favored.  In our clinic we give lemon flavored hard candies for patients to suck on during the port flush or during the chemo administration when the metal taste is stronger.  I would advise every cancer patient keep a small stash in your purse or your clinic bag.

Also, eat foods that are chilled or at colder temperatures to see if that makes a difference.

If meat is particularly "off", try different marinades.

Spices, herbs, seasonings.  Keep in mind if you are the cancer patient and you are also the cook for your family, your taste being off can lead to some heavy duty eye watering and coughing at the dinner table when you might have "seasoned to taste".  Have someone volunteer to be a "taster".  Or better still....let someone else do the cooking!!!!

Some patients getting radiation treatments to the head and neck also complain of these changes.

Here's my shout out to a great website that we use a lot in our chemo clinic.  We print out info sheets of whatever particular chemotherapy drugs our patients are starting and we give them to our patients and review the "most expected" side effects with them.  It is Scott Hamilton's venture:   www.chemocare.com

http://www.chemocare.com/managing/taste_changes.asp

Here's their list of the chemo drugs that are more likely to alter your taste:
Carboplatin
Cisplatin
Cyclophosphamide
Dacarbazine
5 FU
Doxorubicin
Taxol
Methotrexate
Vincristine

This final product, I can't vouch for.  I just found it online.  Very pricey water at $26 for a twelve pack.  But if you are bothered by metal taste and this helps I'm all for it, as dehydration is one of the side effects of chemo that we most want to prevent.  http://www.delightwater.com/

If you try it and it is great, please let me know.  If you try it and it is bunk, please let me know that too and I will remove it from this post.

" I Just Started Chemotherapy and I Think I'm Peeing Blood"

Let's see, the last post was about your bowels and today's is about "Pee".  What a great blog this is!!  I should be down to 2 followers in no time!!

This post is for you if you are a cancer patient receiving the chemotherapy drug Doxorubicin.  You might also know it under it's trade name, Adriamycin.  Some of my patients have their own special names for it:  "The Red Devil",  "The drug that looks like Kool-Aid in the big fat syringe", "the F-ing drug that stole my hair".  The one thing they all remember, is that Doxubicin is the RED drug.  Or Rojo, Rosso, Rouge, Vermelho, depending on what language you speak.

If you get Doxorubicin in the chemotherapy clinic, later that evening (and sometimes into the next day) you will urinate and your "pee" will be red. It doesn't burn.  It doesn't hurt to urinate.  It just is RED.

When I talk to patients about potential side effects of chemo, this is my favorite analogy.  We don't go through that whole long list of side effects of chemo with you just to scare the bejesus out of you.  We want you to be prepared, so that some things aren't so scary if they happen to you.  We want you to learn what is "normal" to expect with chemo (or I should say your new TEMPORARY normal) and on the flip side of that, what side effects you need to let us know about ASAP.

Imagine we give you Doxorubicin on your very first day of chemo (when you are already SO overwhelmed with information and scared).  No one tells you that your urine will be red.  Later that night, you get up to go to the bathroom and you urinate and the toilet bowl is totally red.  You are going to think that you are bleeding to death.  You are going to imagine that your kidneys are shutting down.  You are going to be scared.

So we tell you in advance..."tonight your pee will be red".  You are prepared.  No sweat.  No panic.  You can go back to sleep.

Btw.....the red color should get lighter in color each time you urinate and should be totally gone later the next day.  So, don't worry.

You may be saying why didn't my doctors and nurses tell me this?  Most likely they mentioned it somewhere in between the other 8 million things they want you to remember on your first day of chemo and you don't remember hearing it.  Which reminds me to tell you that it is always a good idea to bring a support person, or note taker with you on your first day of chemo (more on that another day), as 4 ears are better than 2.

If your doctor or nurse really didn't tell you about this, I will say that oncology (cancer) doctors and nurses are some of the hardest working folks on the planet and sometimes they are human just like you and forgot to warn you about it.

Doxorubicin is used to treat a lot of different types of cancers, but it is given to almost all breast cancer patients.  They give it in combination with another drug called Cytoxan or Cyclophosphamide.

Since we are on the topic of urinating, I will tell you one more thing.  Cytoxan, can irritate the bladder and cause problems.  The most important thing with Cytoxan is to drink plenty of fluids and to empty your bladder frequently.  You need to really tank up on fluids (several liters) especially the day before, day of and day after you get your dose.  Also you need to empty your bladder every couple of hours and absolutely at bedtime.  This is to keep flushing out your system and keep the Cytoxan from just sitting in your bladder and irritating it.

Hope this helps!

"Ask Me About My Bowels"

In regards to my multiple questions about his bowels, my patient, the very great Mr. "M" once said, "I'm going to get a bumper sticker that says "Ask Me About My Bowels".  He also said, "F-Interferon and the Horse that it Rode in On", but that is a topic for another day!!!  He was a truly great and original man and one of my favorite patients of all time.  

So, let's talk constipation.  Yes, we nurses are a strange lot.  "Hi, nice to see you.  How are you eating?  How are you drinking?  How are your BOWELS????"  We might have only known you for a few minutes and there we are asking the most personal of details!!

When you are on chemotherapy, some of the medications that we give you to combat nausea, can cause constipation (Zofran, Kytril etc).  That is when they are not causing diarrhea!!  No, just kidding, the diarrhea is usually due to something else : )   These drugs are so great at battling nausea that we usually just tell you to keep taking them and then we suggest medications to keep your bowels working too.  

If you are on narcotics for pain, these drugs are notorious for causing constipation.  Make sure that you are on some kind of medication for your bowels if you are on any kind of narcotic (Percocet, Morphine etc).    After one particular surgical procedure, Mr. "M" complained of "wicked constipation" and I suggested something for him.  I didn't hear from him for a day or two, but I did receive an email that simply said, "The church bells finally rang!!"   

A lot of ovarian cancer patients have issues with their bowels because they have had their insides tweaked and torqued and twisted and tortured. They tend to get bowel obstructions (blockages) due to adhesions (aka a kind of scarring), after having had such extensive abdominal surgery done.

I am not advocating for whatever procedure they are selling on the link below, but I like the way they describe what adhesions are and how you can get them from having intensive abdominal surgery.   

"Adhesions form as the bodies first response to a trauma, surgery, infection, or inflammation. These adhesions are made up of strong, fibrous cross links that attach to the nearby tissues and organs of the damaged area. When the abdomen or bowel experiences a trauma, adhesions can begin to form in the bowels, causing bowel obstructions. These adhesions can cause bowel obstruction in three different ways.

1. Adhesions can form inside the bowel.

When the bowel experiences a trauma, such as a surgery to remove part of the bowel, adhesions can form inside the bowel. These adhesions, made of thick collagen bonds, make it difficult for food to pass and can often cause cramping and pain during the digestion process.

2. Adhesions can surround and restrict the bowel from the outside.

After a pelvic or abdominal trauma, adhesions can form outside the bowels. These adhesions can surround the delicate tissues of the bowel, restricting and pinching them from the outside. This causes a decrease in digestive function and often pain and cramping after eating.

3. Adhesions can surround and kink the bowel like a garden hose.

When adhesions form on the outside of the bowel, they can surround the bowel causing it to kink much like a garden hose. This often creates a partial bowel obstruction, which makes digestion of solid foods difficult.

http://www.clearpassage.com/blog/3-ways-adhesions-cause-bowel-obstructions/

There are other reasons for cancer patients getting constipation. Senakot, Miralax, Colace, Peri-Colace, Dulcolax, Lactulose and my all time favorite name (usually for a colonic prep prior to a colonoscopy).."Go-lytely" (Someone at that drug company had quite the sense of humor). If you are a cancer patient, I can guarantee that you have tried at least one of the drugs above. 

So this week, one of my support group members told me that her nurse practitioner told her about "Coconut Water" to help with constipation. Apparently the NP reported that she didn't know what the mechanism was or how it worked, but that the word on the street among her ovarian cancer patients was that it seemed to work.

My support group member reported back to us that it did indeed work!!!

So, I can only report this to you based on the experience of one patient, but I always listen to my patients!!!

She used Trader Joe's Coconut Water with Mango.  She says the taste is rather vile, but it beats knocking back another shot of Milk of Magnesia.

I've seen Coconut water in several grocery stores, so it shouldn't be too hard to find. 

If you try it and it works, let me know!!! 

Hope it helps!!!

A Little Bling for a Good Cause

Here's my disclaimer...I have a particular soft spot in my heart for a certain group of ovarian cancer survivors.  They are the incredible "Goddesses" of the BMC Ovarian Cancer Mind-Body Support Group!!!  Here is one of their favorite resources:  Ovations for the Cure.  


Ovations for the Cure has raised 1.4 million dollars to support ovarian cancer research and programs, the majority at Dana Farber Cancer Institute and Brigham and Women's Hospital in MA.

Per their website:  “Ovations for the Cure is an organization dedicated to supporting research objectives, groundbreaking treatment programs, public education awareness efforts, patient information and morale-boosting initiatives for ovarian cancer survivors.”  We're all for that!!

http://www.ovationsforthecure.org

Ovations has a variety of programs:

•  The annual “Learning for Living with Ovarian Cancer Symposium”—a free conference open to ovarian cancer survivors to discuss the latest research and news about ovarian cancer. 

•  Their "Happy Feet" program which provided a boost of fab fashion shoes to over 3500 women. 

•  The “Princess Bead and Bracelet” project which provides free bracelets to ovarian cancer survivors as a “way of guiding them on their road to recovery” 

•  The “Helping Hands" food assistance program-provides a month’s worth of food for 8 ovarian cancer survivors per month who need assistance.  Two of my support group members received assistance from this program and they were very grateful for these well balanced meals.  They deliver them to your house.   Apply at:   www.ovationsforthecure.org/programs/programs_helpinghands.php

I think that the "Helping Hands" program is just for women in Massachusetts, but the website says New England.  I will investigate this, but in the interim I would suggest that you apply online or contact Susan Patterson at 508-655-5412 (current 2012 phone number) or susan@ovationsforthecure.org for specifics. 

Here's a picture of the awesome bracelet that is given free to all ovarian cancer survivors ($50 if you received the free shoes from Happy Feet program already).  It really is beautiful.

To get your survivor bracelet:   www.ovationsforthecure.org/programs/programs_princess.php 

There is also a "supporters" bracelet for the loved ones of ovarian cancer patients ($100).  The money goes to a good cause.  The only difference between this and the survivor bracelet is that the bead on this one has a few rows of "clear" beads and says "supporter" on it.  The other is solid teal and has the word "survivor" on the bead.

To order your supporter bracelet, go to the same website and order right below the link above.

When I called Ovations in 2011, they had not come up with the supporter bracelet and I was not very  happy about this.  I loved the bracelet and wanted to show my support for my "Goddesses".  So, I made my own.  

I strongly encourage buying your bracelets from Ovations because they are a much higher quality than the one I made.  Also, most importantly, the proceeds from sales go to ovarian cancer research and programs.  Ultimately we all want a CURE FOR OVARIAN CANCER!!!

BUT....I also know that if you are an ovarian cancer survivor who already got the free shoes from Ovations, $50 is a lot of money (especially if you are going through treatment).  I would hate to see a survivor denied the opportunity to wear one to show her solidarity with her sisters, and to tell the world that she is an ovarian cancer survivor.  So, I will tell you where I got my beads.  I will also tell you that it was extremely easy to make this.  You basically just unscrew the ends and slide 3 beads on.  Believe me when I tell you that if I can do it, anyone can.

I strongly URGE you to buy yours from Ovations, but here are the links to buy the bead and bracelet if you can't afford the $50.  Remember, if you didn't get the "Happy Feet" already from Ovations and you are an ovarian cancer survivor, the bracelet is FREE.

Teal crystal bead:    http://www.amazon.com/Christmas-Bling-Jewelry-Swarovski-Compatible/dp/B00427QX0S/ref=sr_1_1?ie=UTF8&qid=1328157785&sr=8-1

I also honor my patients with other cancers besides ovarian cancer.  They have beautiful beads in pink for breast cancer, blue for colon cancer, orange for leukemia (this one's for you Cindy!!) etc.  Check out Amazon or www.artbeads.com  (look for the Caspia line on artbeads).

The bracelet is called a 2.5 mm cuff bracelet.  You can get them in sterling or cheaper if it is not real sterling.

For all of the bracelets (from Ovations or other), make sure you tighten the little balls at the ends every time you put it on, as they tend to loosen and fall off. 

If you would like to donate to Ovations, it is a good cause.  If you would like to "sponsor" a bracelet for an ovarian cancer survivor, go to the same Ovations link to donate.

If you are a cancer survivor and don't know what "color" has been chosen to represent "your" cancer, here is a list:   http://www.chemoangels.net/Angels%20Corner/Sub%20Folders/cancer_colors.htm

Hope this helps!!