THRIVE ON!

I met with a good friend recently.  We talked, like we always do.  She is a very spiritual woman, who is strong in her faith...And I always go away from our meetings feeling very uplifted.  She has this way about her...That always seems to encourage me.

And...Although sometimes I don't feel like it...She tells me that I also encourage her.  It's amazing the impact that SOMETHING...or SOMEONE can make...without really intending to.

When I began this blog 7 yrs ago....It's intention was to put myself out there...Tell MY story, so that somewhere...Somebody would feel less alone.  I wanted to Inspire...Uplift...And Encourage those living with Neurofibromatosis...And help them see that a THRIVING LIFE was possible!

A few years ago, I began to end my blog posts with "THRIVE ON!".....Which has been echoed back to me several times, which really makes me feel GREAT!

So GREAT, in fact that it has been the staple of how I live my life!

I want to share with you a way that YOU TOO...can show what a THRIVING LIFE looks like!  A way to LIVE PROUD...And shout to the world that YOU ARE AN OVER-COMER!  A person who doesn't let life's obstacles hold them back!!

Cancer?  Brain Tumors?  Neurofibromatosis?  THRIVE ON means that you go beyond JUST DEALING WITH IT!  You FACE IT!  YOU EMBRACE IT!  And you THRIVE with IT!

Get your T-shirt now by clicking on the shirt of your choice....Join ME as with THRIVE THROUGH LIFE!

THRIVE ON!

Guest Post- Mesothelioma Awareness Day

Mesothelioma Awareness Day

I am all about AWARENESS.  Especially for Neurofibromatosis....But when someone contacts me, who has stumbled across my blog, asking for help with awareness for something they are dealing with I am happy to help.

I met Heather Von St. James through my blog.  Heather is a cancer survivor.  A true fighter and advocate for Mesothelioma. Please visit her blog - http://mesothelioma.com/heather

I have to admit...I don't usually blog about things outside of my world of Neurofibromatosis, but Heather's story inspired me so much, and her fight for awareness was familiar to me. 

Heather was diagnosed with Mesothelioma at the age of 36 - and given just 15 months to live.

Mesothelioma is an aggressive form of cancer that attacks the lining of the body cavity, specifically, the lungs.  This type of cancer is caused by Asbestos- (a fibrous building material that is used for insulation)  Research has found that breathing in the minuscule asbestos fibers over long periods causes physical and metabolic changes in the body, leading to certain cancers. 

Eight years after being diagnosed, and undergoing a life saving surgery, that required the removal of her left lung, Heather has beaten the odds, and is now fighting to give Mesothelioma a face.  

Awareness is very important, it gets people talking and helps people understand that while YOU may not be affected by something - You can STILL DO SOMETHING to help someone who IS.

Please go to http://www.mesothelioma.com/ to read more about Mesothelioma

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  

Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's

 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)

Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.

  

But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...

She has a tumor that went from "nothing"...to "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.

Merry CHRISTMAS

THRIVE ON!

Is It Cancer? MPNST and Neurofibromatosis

No one wants to hear the word Cancer directed at them, or anyone for that matter.  But for those of us with risk factors, we must realize the possibility of it happening.


Neurofibromatosis carries with it a number of issues; neurofibromas,  pigment changes in the skin, skeletal anomalies, and learning disabilities.


Although neurofibromas are benign tumors, malignant peripheral nerve sheath tumors (MPNST) sometimes occur. MPNST, in the past also referred to as “malignant schwannoma” or “neurofibromosarcoma,” and can occur in the general population but is one of the hallmark complications of NF1.


MPNST, typically forms from unexpected growth of a preexisting neurofibroma, particularly a plexiform neurofibroma, the first symptom is typically unexplained or sudden pain, in the area in or around existing tumors.


Symptoms may include:

• Swelling in the extremities (arms or legs); the swelling often is painless.
• Difficulty in moving the extremity that has the tumor, including a limp.
• Soreness localized to the area of the tumor or in the extremity.

The thing to remember is that just because you have a higher risk in developing cancer, doesn't mean you will.  Being aware of your body and noting to your doctor any changes you notice is key in staying healthy, and catching things early.  Be aware of your tumors...how they feel and what they look like.

What is MPNST?

MPNST is also referred to as malignant Schwannoma, neurofibrosarcoma, and malignant neurilemmoma. This type of cancer usually develops in young or middle-aged adults, more often in men than in women. The average age of MPNST patients is between 29 and 36 years. About half of all cases of MPNST develop in people who have Neurofibromatosis.
http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor

Treatment?

To treat these tumors, a patient sees an oncologist and a neurosurgeon.  Also, patients can benefit  from being treated by medical teams that specialize in soft-tissue sarcoma tumors. Treatment of MPNST often involves several steps, depending on the location of the tumor, type of sarcoma, other patient circumstances and overall health.

Types

• There are three main types of treatment for MPNST. These treatments are surgery, radiation and chemotherapy. Doctors often use all three types in combination to create specific individual treatment plans for a patient.

*Surgical Removal

• The most common treatment for malignant peripheral nerve sheath tumors is surgical resection. Resection of tumors involves the removal of the tumor and surrounding malignant tissue. The doctors analyze the edges of the area removed, and if cancerous cells remain, they remove a little more surrounding tissue. This continues until the tissues the doctors remove are clear of cancer cells.

Radiation Therapy

• Radiation is the use of specifically directed ionized radiation in a medical setting. Radiation is a common treatment for these tumors, and is often very effective at different stages. Preoperatively, radiation can reduce the size of a MPNST, making surgery easier for the doctor and therefore reducing the time spent under anesthesia. Radiation helps doctors achieve clear borders without having to cut out more tissue, which is very important when the tumor is in a peripheral area such as an arm or leg. Clearing the borders without going deeper often saves the patient from an amputation. Radiation can also destroy cancer cells that surgery couldn't remove.  (Radiation is sometimes used as a "last resort" with people with NF, because it has been studied that Radiation can make the symptoms of Neurofibromatosis worse.  Your doctor will decide what is best for YOU and your situation

Chemotherapy

• While chemotherapy is not particularly effective at treating localized MPNST, doctors often use it to treat cancer that has spread to other areas. Chemotherapy, taken either orally or intravenously, involves taking medication that kills cells.

I didn't want to start the week with a negative post that scares people, but MPNST happens....And the more you know about it, the better chances you will have at catching it sooner.

MPNST is rare...But if you arm yourself with knowledge, IF it does happen to you, your outcome will be much more positive.

Even when it's scary....Even when it's overwhelming...A Positive Attitude is key in fighting ANY battle!  Remember, it's E.A.S.Y. to THRIVE; EDUCATE yourself-Watch your ATTITUDE-SHARE your stories-and YIELD to the possibility that anything is possible!

THRIVE ON!

Boob Awareness and Neurofibromatosis

"Save the Tata's",   "I *heart* boobies",  "Think Pink",  "Put the squeeze on Breast Cancer"

It's hard to miss.  Pink is EVERYWHERE!  Even the Diet Pepsi can I am drinking from right now is pink.  But if you haven't heard, October is breast cancer awareness month and it's in FULL swing!

Celebrating 25 years, The National Breast Cancer Awareness Association has been promoting awareness to help women all over the world to become experts with their own bodies.  The Awareness doesn't just stop there, however...It involves everyone around the woman as well.

But what if you have a condition like Neurofibromatosis; a genetic condition that causes benign tumors or neurofibromas to grow along nerves in the body or on or under the skin?

I have Neurofibromatosis.  I also have many tumors that are scattered all over my body...Including my breasts.  The topic of breast cancer scares me, since people with 'NF' are more prone to various types of cancer.

When doing a self breast exam, it's hard for me to distinguish if what I am feeling is "normal"....Because normal for a woman with Neurofibromatosis, means something completely different for a woman without NF.

The first step in doing an exam is to get to know your boobs.  Seriously.  Touch em, squeeze em, tug on em....Trust me, they won't fall off!  

Normal boobs are lumpy, so get to know your "lumps".

Test 1

Using a mirror, inspect your boobs with your arms at your sides, with your hands on your hips, and with your arms raised while flexing your chest muscles.  Men do this too, and sure it may look or seem silly, but it can save your life, so do it!

Test 2

Look for any changes in contour, swelling, dimpling of skin, or appearance of the nipple. It is normal if your right and left breasts do not match.  I have names for my boobs, but that's another blog post entirely.

Test 3

Using the pads of your fingers, press firmly on your boob, checking the entire boob and armpit area. Move around your boob in a circular pattern. Remember to use the same method every month. Check both boobs. If you have any growths or painful lumps, make an appnt with your Dr. ASAP!  

Test 4

Gently squeeze the nipple of each boob and report any discharge to your doctor immediately.  Ladies, if you are breastfeeding, this of course does not apply to you.

Test 5

Examine both breasts lying down.  

(I have to do this with the doors locked, cuz some people in my house may take this as an open invitation)

Women with Neurofibromatosis have a harder time with breast exams, because new neurofibromas are constantly appearing, but if you get comfy with touching your boobs, and being aware of any sudden or painful changes, you can have a successful breast exam too.

Is It Breast Cancer? Warning Signs You Shouldn't Ignore

Breast cancer has some obvious and not-so-obvious symptoms that you shouldn't ignore. Pay attention to your breast health so that you can identify changes early on. Schedule an appointment with your doctor right away if you experience any of the following symptoms in one or both breasts:

• A new firm lump or mass in your breast
• Your nipple suddenly becomes inverted (goes in) or dimpled
• Discharge from your breast other than milk that comes out on its own
• You're being treated for an infection of the breast and it doesn't get any better or any worse after a week or two
  
  
  I have wanted to talk about this topic for a LONG time, but wasn't sure how to approach it.  And all joking aside, it is estimated that approximately 40,000 women (just in the USA) will die from breast cancer!  So while you may think it's silly or uncomfortable to touch yourself, it could very likely save your life!
  
  
  Being comfortable with my own body, is VITAL, if I am to THRIVE.  Thriving doesn't just stop at Neurofibromatosis....I plan to THRIVE in every single area of my life!
  
  
  If you haven't touched your boobs this month....do it RIGHT NOW!
  
  
  Thrive On!