My Continuous Battle With Tiger Girl!

Hello my wonderful readers,

First of all, I cracked up when I saw there was an actual comic book character named "Tiger Girl" since that's what I've been calling myself for the past 3 weeks! I am, of course, referring to the sexy, pesky and painful tiger-stripe rash all over my body that I first wrote about here. The rash is a severe allergic reaction to the IV Remicade that I received on September 11, but who woulda thought I'd still be popping Benadryl like it's candy?


The reaction also started giving me nosebleeds, severe fatigue, and weird bruising, so my rheumatologist referred me to Dr. Bernard Feigenbaum - an allergist in New York City. I've never had to see an allergist before, but to be honest, I was kind of digging the whole profession. The doctor and his nurse sat down with me and took down a detailed narrative of my past month. It kind of felt like being transported into a mystery novel: "Where were you on the night of September the 14th?" "Who were you with....when did these mysterious stripes first appear?" I'm sure it was slightly less exciting than all of that, but hey -  a girl's gotta cope!


In all seriousness, though, I'd recommend that doc to anyone and it's no surprise the referral came from Dr. Jessica Berman, my rock star rheumatologist. Ever since I met her, the quality of my medical care has skyrocketed and I feel a genuine sense of security amidst this recent chaos. That says a lot. After the appointment with Dr. Feigenbaum (brace yourself), he called a few days later "just to check up." We confirmed that the outbreaks were, in fact, from the Remicade and that unfortunately I can't even conceive of introducing a new medication into my system until this junk is out of my system. It could take a few more days or it could take months, so that's the rough part. My awesome insurance company also wont approve another medication until the end of October, so I guess I was in no rush anyway. Sigh...the red tape & daily realities of a sick chick.


In the meantime, Dr. Berman is in touch an impressive amount, reassuring me that we'll get this under control. I'm also still on prednisone - a steroid that helps my pain tremendously, but also gives me the following SWEET side effects:


1) A face that resembles that of a chipmunk more and more every day :( 

2) Inordinate amounts of sweating (thanks for putting up with me John)

3) A general sense that I'm about to jump out of my own skin...no big deal

4) Insomnia (at least I'm all caught up on my TV shows)

5) Foolish amounts of gas (again, thanks for loving me anyway John)

6) Constant thirst ( I think my apartment building is experiencing a water shortage because of me)
7) An appetite that can only be described as akin to Garfield

To be honest, the tone of this post sort of mirrors a general shift in my outlook lately - a kind of "going with the flow because what the heck else can I do?" feeling. I've got to laugh about all of this or I'll lose it. It's actually been pretty fascinating to see the coping mechanisms that our minds are capable of utilizing when our bodies couldn't be more unpredictable. I'll write more about that later, but for now - thanks for reading!

Love,

Maya

Spotlight On A Superwoman: Meet Liza Talusan!

It's a very funny thing to grow up and start looking back on the other "grown-ups" who have filled your childhood. Once tall, all-knowing, and sometimes intimidating figures simply turn into fellow human beings; people to reflect on, learn from, and relate to in a whole new way. And thanks to social networking sites like Facebook (they do have their benefits!), we can re-connect easily and often. In the past few years, I've had the chance to be in touch with many inspiring  mentors, teachers, and professors from my past. One of those special individuals is Liza Talusan.

I spent 13 years (Kindergarten - 12th grade) at Friends Academy, a Quaker school on Long Island. It afforded me so many opportunities, but in retrospect one of the greatest gifts was its faculty. I first met Liza in middle school when she was a faculty leader of "Natural Helpers", a peer mentoring group I was part of in high school. Liza was undoubtedly known as one of those "cool teachers" - and not the kind that had to try for that title. Her personality was laid back, understanding, and just plain fun. She also formed Friends Academy's first a capella group - the Quaker Notes (for that name alone, she deserves a spotlight, right?) and we got to sing together for a while!

From left to right: Joli, Evan, Liza, Jada & Jorge -
a beautiful family

It wasn't until this past year, though, when I  started paying attention to Liza's  amazing blog, that I realized what a phenomenal woman she really is. As the wife of  Mr. Vega (the coolest of all theater teachers who also worked at Friends Academy), the mother of three beautiful children, and a full-time administrator at Stonehill College  (Director of Intercultural Affairs), you'd think she'd have her plate more than full.  But it seemed Liza discovered an entirely new level of energy and passion once cancer entered the scene.

On August 17, 2005 Liza's family was hit with life-altering news: their oldest daughter, Joli, was diagnosed with Retinoblastoma (a childhood cancer arising from immature retinal cells in both eyes) at age 2. In the years to come, Liza fought this battle hand in hand with her daughter and modeled true strength and love on the face of adversity (to the left is this dynamic duo).  Not only did they find courage, but they found meaning in this fight. Liza went on to become involved with families coping with Retinoblastoma and still works hard to spread awareness today. Cancer crept into other parts of Liza's life as well. Finding out that she was a "pre-vivor"(someone who is genetically positive for cancer but has not yet developed detectable tumors), just like her two sisters, could have had disastrous effects for someone so full of life. But Liza transformed even this news into something wrought with purpose, dignity, and beautiful strength. To be honest, Liza makes it that much easier for me to keep fighting my fight - she's living proof that nothing's out of reach.

While I began these spotlights intending to write about people currently living with chronic illness and/or disability, I thought Liza's perspective was an especially powerful one. As a pre-vivor and someone particularly motivated to live life, we can all learn so much from her. And if you didn't think Liza could be a bigger rock star, did I mention that she's about to run her SECOND half-marathon this October? It's an endeavor she has named "Marathon B4 Mastectomy" and writes about eloquently on her awesome blog. But enough out of me. At this point, let me let Liza's incredible voice speak for herself...

What is the year you were first diagnosed? How old were you ?  

I found out I was BRCA+ in October 2007 - after my sister, Mary, was diagnosed with breast cancer at age 36, and after my sister Grace tested positive for the BRCA gene. I had just turned 32 years old.

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

Finding out I was BRCA positive was made extra helpful by the fact that I had a wonderful support system of my sisters who had paved the way. I saw what they had both gone through, ranging from having to deal with aggressive cancer treatments to the preventative testing and prophylactic surgeries. Because of my family support, I was also quickly connected to many online support groups, most notably Facing Our Risk of Cancer Empowered (www.facingourrisk.org). They are a leading organization of professionals, patients, and pre-vivors who knew exactly what the BRCA gene was all about, the risks that are associated with being BRCA+, and the emotional turmoil that accompanies knowing your body is a ticking time bomb.   

Of course, there is no cure for BRCA; rather, there are a number of options for managing the risk of cancer: prophylactic surgery, chemoprevention, surveillance, to name a few. With BRCA, these measures involve both the breasts and the ovaries, each carry a different percentage risk of developing cancer. My advice is to arm yourself with knowledge, and embrace that even the knowledge is evolving. I do the best I can, each day, to manage the anxiety, the physical risks, environmental risks, and the emotional exhaustion that comes with hereditary cancer. I also do the best I can, each day, to embrace the lesson being BRCA positive has given me: to live life.  

Please explain a bit how your condition affects you. (for example: What are the symptoms and what is the hardest to cope with? Has the disease changed with time? etc. )

As a pre-vivor (someone who is genetically positive for cancer but who has not developed detectable tumors), there is a great deal of mental stress: "When will a tumor appear?" or "WILL a tumor appear?" or "Is this pain in my breast just a pain, or is it a tumor?" There are so many doctor's appointments, naturally, that come with being BRCA positive -- surveillance of both my breasts (through frequent mammograms and MRIs) and ovaries (ultrasounds and exams). There are also steps towards preventative mastectomies and preventative oopherectomies, each carry major side effects. Decisions whether or not to reconstruct breasts, take hormones, enter into surgical menopause, or which kind of surgeries to have are also very difficult decisions to make.

Given the odds (anywhere between 60-90% chance of developing breast cancer and 40-60% chance of developing breast cancer), it seems the longer I go without tumors, the more likely I am to develop them. Also, the older I get, the closer I get to menopause which seems to increase my risk. 

What are 3 things you couldn't live without?

1. Meeting other women who are also BRCA positive has been life changing. I attended the national meeting for BRCA, hosted by FORCE, and was able to see women in different stages of mastectomy recovery.

2. My sisters who are my role models in this whole process.

3. The support of my family, particularly my husband, who has been unconditionally supportive of my decisions. I've met so many women who do not have supportive partners, which simply makes this an even tougher process. 

                                                                                   

What are you most proud of?

In January 2010, I decided to do a "Marathon B4 Mastectomy". While I knew I wasn't going to run a full marathon before my surgery, I did commit to running a 1/2 marathon. C'mon .. "Half Marathon B4 Mastectomy" just didn't have the same ring to it! About 20 people joined me on this journey and, in June 2010, I ran my first 1/2 marathon. I came in nearly last, but I crossed the finish line! I felt so proud of myself that I signed up for a second 1/2 marathon that I'll be running in October. Now, while your readers don't know me, I always mention that I'm 5'3", 190 lbs, and certainly not built like a runner, especially a distance runner. I'm living proof that plus sized women are also strong, determined, disciplined, and motivated athletes, just like the skinny gals! 

Where do you get your strength?

I wake up every single day thankful for my family. My children, especially my oldest child who was diagnosed with cancer when she turned 2 years old, are what I live for each day. I want them to be proud of me, I want them to be able to talk about their mother with pride and admiration. I need to look in the mirror, every single day, and know that I made my kids proud. Selfishly, I need to know that I did something to make the world a better place for them and for generations after them.

Throughout my life, I've always been overly critical of myself: of how I looked, how I dressed, who I knew, who I didn't know, and what I professionally aspired to do. Yet, deep down, I lacked confidence and self-esteem and tried to always over compensate for where I fell short.  After being diagnosed as BRCA positive, I have learned to love myself. I have learned to love myself for my faults as well as my strengths. Whether it's chronic illness or a hereditary risk, I believe my condition is a gift. Knowing I'm BRCA positive has taught me to see the beauty in people, to withhold judging of others based simply on what I see on the surface. After all, no one can tell just by looking at me that I'm BRCA+, that I carry this incredible risk for developing cancer. So, in turn, I try my best not to judge others based on what they show me; rather, I try to approach them with a curiosity and acceptance for what I can't see.  

If you could send one message to medical professionals around the world, what would it be?

Accept that you may have said something 20x that day, but I may be hearing it for the first time in my life. I feel like this should be Bed Side Manner 101. And, maybe it is. But, in too many ways, I've been told really difficult news without any sensitivity. For example, when I was pregnant with my child (after I had found out I was BRCA+), a medical professional straight out just said, "Well, if you want, we can just schedule you for a C-Section and remove your ovaries at that time." So matter of fact. I was like, "Wait? What did you just say to me??" I was already so emotional from being pregnant, and here someone was suggesting a life-changing surgery for me as if it was nothing. Another example was when I was having an ultrasound of my breasts because I had found a lump, a medical professional decided to give me a lecture on why I should not breastfeed my baby. Should not? Yes, that's right. There was little I could do as I was laying on a table with myself exposed, and all I could do was fight back tears.

Thank you so much Liza! We're all better for knowing your story...

Love,

Maya

A Cause So Near & Dear to Me (Please Read)

The two beauties above are Sara and Laura Ferrarone, my boyfriend's sisters and two women I couldn't love more. They both live with a progressive and life-threatening disease called Friedreich's Ataxia (FA). This is the exciting part: it seems a cure (and our family's miracle) could be on the horizon! Margaret Ferrarone (John, Sara, and Laura's amazing mom and my "other mama") is participating in Ride Ataxia Philadelphia, a long bike ride this October to raise money for FA research. We could use your support - even five dollars means a lot. Please read Margaret's recent letter to family and friends and learn a bit more about this incredible family...

Sara Ferrarone

Laura Ferrarone

Dear Friends,

 Two young women in my life continue to make me proud everyday in the way they approach and accept the challenges of their life’s course.  As you know, these are my daughters, Sara and Laura.  Since I gave up working over a year ago to focus more fully on their needs and to figure out how to help them gain more independence, I likely have faced one of the tougher challenges of my life.  First, I am everyday faced with their physical and health obstacles and there have been many.  Second, I am emotionally connected to the frustrations they face as they are losing abilities and having to accept those losses.  Finally, I am anxious that there is not a cure TODAY for Friedreich’s ataxia.  I remember at Sara’s diagnosis in 1996 when the doctor said that potential cures would be the year 2000 or beyond;  that seemed like a lifetime.  Well, never in my wildest dreams did I think that in 2010, I would still be waiting.  Little did I understand what it takes to cure a disease.

Laura, John & Sara

 On September 26, Sara and I are travelling to Philadelphia to the Children’s Hospital to begin a drug trial that will last a couple of months with 5 separate trips to Philly.  This is one of several studies that are underway or will be underway in the months to come.  Both Sara and Laura will participate in another study here in Rochester next Spring.  Finally, a little hope has arrived at our door.  Our years of fund raising and contributing have meant something.

 On October 10, I am going back to Philadelphia for the Ride Ataxia bicycle ride.  I am no bike rider and in fact just borrowed a bike this summer to start riding and to gain the confidence to ride in an event such as this.  I am slow and steady!  I will set no records and in fact I just hope I won’t keel over after the many hill climbs outside Philly.  It may be more of a walk with my bike by my side!  However, my purpose is not a bike ride, it is to focus on the treasures of my life while helping fund the research.

The Wonderful Ferrarones and me, Italy 2010

As many of you addressed in this letter have given so much before, my request is not made without hesitation.  There are endless ways that friends and family have supported Sara and Laura over these many years.  They have benefited from the financial support to research but, more importantly they have been immeasurably blessed by the love, care and thoughtfulness of many.

If you are able and interested in supporting this Ride Ataxia, I have a fund raising page set up online with a link below.  If you are interested in sending a check for me to donate, that is fine too.  All fund raising goes to FARA, the Friedreich’s ataxia Research Alliance.  These are friends and close allies who are so diligently working with researchers around the world to cure this disease.  Please check out FARA’s website if you are interested in more info.  Click here to reach my personal  fund raising.

Again, many thanks for enduring my years of asking for help.  My appreciation is sincere and infinite.

Margaret

Thanks for reading! I hope you'll consider sponsoring Margaret in this great endeavor and adding to our family's hope. It would mean the world.

Love,

Maya