Spotlight on Megan Bonstein: Candidate For Woman of The Year!!!

My friend and classmate, Megan Bonstein, is quite simply an incredible woman. As a two-year survivor of chronic myelogenous leukemia (CML), she is "thrilled and honored to be a candidate for the Leukemia & Lymphoma Society's Woman of the Year for the New York City Chapter!" Her spotlight is below, so you can read more about her amazing story. The campaign kicked off on March 10 and will end on May 19.  Each dollar that Megan raises for LLS counts as a "vote" and the candidate with the most "votes" is named as the Man or Woman of the Year. Please read more about Megan and consider donating to Team "MegaHope: Gratefully Giving Back!" Below you'll find an interview I did with Megan - first about her campaign and then about living with chronic illness! Enjoy...

Click here for Megan's awesome site & to donate!

What made you go for this now? 

What better time than now?  This campaign is a great opportunity.  I decided to accept my nomination for many reasons.  I really want to raise money that will directly impact people's lives, and with my personal connection, impacting patients and survivors of blood cancer has special meaning to me.  I believe that direct impact can happen with the Man and Woman of the Year Campaign.  I just passed my two-year anniversary of my CML diagnosis.  Being a candidate is the ideal way for me to raise awareness, give back, and mark my two-year anniversary.  Luckily, the campaign team is from all over the Eastern United States, so we can get the word out in many communities.  The goal is to raise money that will create life-saving possibilities through new research while building on some of the current successes in treatment that have helped people like me.  I'm very excited to get started.

What would it mean to you if you won? 

As my boyfriend Elliott said, "whoever wins, blood cancer loses!"  I agree!  It's a tremendous honor just to be a candidate.  It would bring me great joy to win Woman of the Year, mostly because it would mean my campaign team and I worked hard and were able to raise a large amount of significantly needed funds.  Also, it would allow me to continue raising awareness and advocacy in a unique role.

How can readers help you? 

Readers can vote for me starting March 10 by making a donation, and passing on the website to friends or families who may be interested in learning more, making a donation, or otherwise getting involved.  Any contribution is deeply appreciated.  We will also be having events in different locations around the country, so stay tuned for updates.  If any readers have questions or ideas of ways to get further involved, contact me at megansue@gmail.com. 

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

Endometriosis - Diagnosed 11/11/08.  Age 24. 

Chronic Myelogenous Leukemia (CML) - Diagnosed 1/27/09.  Age 24. These conditions are not thought to be related in any way, 

however the process of diagnoses was related.  I had undiagnosed pelvic pain and heavy periods for years, then started having problems with rupturing ovarian cysts.  Finally I received a diagnostic laparoscopy -- a minor outpatient surgery which resulted in the discovery of endometriosis.  After the surgery, I had extensive bruising across my abdomen and pelvic region.  Having never had surgery before other than as a baby (which I don't remember) and on my wisdom teeth, I did not know that the bruising was significantly more than "normal" until I had a follow up with the OB/GYN who performed the surgery.  She saw the bruising and urged me to see a hematologist.  The hematologist I originally saw found the actual mutation in my blood that causes CML (the Philadelphia chromosome), and I was diagnosed and referred to a specialist at the Weill-Cornell Leukemia Program.

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

For someone diagnosed with any chronic illness (including endometriosis and CML), there are a few things I would say:

First of all, you are not alone. No two people have the same exact experience even if they are the same age and diagnosis, but there are others out there who can relate. Getting involved and reach our to find others with the same (or similar) illness can be very empowering.  The loneliness and isolation that can accompany chronic illness may not ever go away completely, but it has helped me tremendous to plug into communities where there are others going through similar things. By getting involved and meeting others with your same diagnosis, there is a lot of reciprocal education that can occur about treatments, side effects, new research findings, etc. This wil help a person get information and support, and also an opportunity to give information and support to others. And getting involved is also a great way to form friendships where the disease is NOT always the topics of conversation even if there is a shared diagnosis. Reading about the newest illness-related events, research, etc. is very helpful, but it took me a while to be able to do that without feeling overwhelmed. 

Experiencing chronic illness is overwhelming and it can be a major bummer. It can bring on so many emotions. Don't apologize for any of this and don't feel afraid to find a safe place to talk about what you're going through. Make sure you voice your concerns to doctors/nurses.medical professionals. Be your own advocare, and if you feel it is helpful, bring a friend or family members to your doctor's appointments. As much as no one would "Sign up" for any chronic illness, I do believe with all the ups and downs, it builds enormous inner strength. You are so much stronger than you will probably ever know.

Please explain a bit how your condition affects you. 

Endometriosis: The cause of endometriosis is unknown and there is no cure.  I have most likely been experiencing endometriosis since puberty.  For me, the symptoms have historically included very heavy, painful periods, cramps throughout the month, bloating, abdominal pain, pelvic pain, ovarian cyst ruptures, and fatigue.  Endometriosis is thought to be an immune disorder, and may explain the fact that I have always been susceptible to "catching whatever's going around."  Since being on continual hormonal treatment, I no longer have 

a monthly period, so menstrual-related symptoms are much lessened.  All other symptoms remain present but improved.  There are times when I have  hot water bottle on my belly for days, and times when I barely notice any pain.  I have personally found acupuncture to be helpful for pain management. There is a significant chance that my fertility could be compromised by endometriosis, but I won't know that unless I decide to try for children.

CML:  The cause of CML is unknown in my case, and there is no cure.  The only potential symptom of CML  I ever displayed was bruising.  I had been feeling a bit of fatigue around the time of diagnosis, but that was not out of the ordinary for me for years, so it could have been due to the endometriosis.  More than ten years ago, CML was usually treated with a bone marrow transplant, which is a very risky procedure.  Since the advent of Gleevec, the first of a class of drugs called Tyrosine Kinase Inhibitors (TKIs), CML patients have often been treated instead with TKIs.  The survival rate has gone way up with this new class of drugs.  They may be sometimes referred to as "soft 

chemo" and are taken orally.  I was very lucky to never be hospitalized long term, never go through traditional chemo or raidiation with hair loss.  That being said, I did not tolerate treatment well initially. As a chronic cancer, this is a cancer people which people "live with" on treatment indefinitely.  The biggest problem has been dealing with side 

effects.   I was first put on the TKI Gleevec, which caused severe rash, headache, extreme bone and joint pain, thinning hair, muscle cramps, 

anemia, vomiting, diarrhea AND constipation, puffiness around 

the eyes, bloating.  Even with these side effects, the Gleevec was incredibly effective at fighting the CML and I had a complete molecular response within about eight months.  I am so grateful for the swift response to treatment I had.  Once the leukemia was deemed undetectable, I was eventually switched to Tasigna, a newer TKI.  Thankfully, I have tolerated it much better, but continue to live with side effects--mostly joint pain and muscle cramps.  The biggest change over time has been the improvement of my day-to-day living with the change of my treatment.  If I decide to have children, there will very likely be some challenges as I should not be off treatment for a very long period of time but cannot be pregnant on any TKI.

The hardest thing to cope with for me is knowing if and when it's

 appropriate to share the fact that I am living with chronic illness.  I am very interested in speaking with people living with multiple chronic illnesses, because I am certain there are many people out there who fit that description.  My life has been deeply impacted by chronic illness and I am not ashamed of that, but it is also not definitive of who I am, so separating all that out can be challenging.  Another very hard thing is just the fact that life feels a lot more unpredictable as a direct cause of chronic illness.

What are 3 things you couldn't live without? 

Family, friends, and creativity.

What are you most proud of? 

How far I've come.  I could say much more about this, but in the simplest terms, that is what I'm most proud of.

Where do you get your strength? 

My family and friends are incredibly supportive.  I have found strength within myself as I've continued to do lots of soul-searching and as I've continued to strive for optimum wellness. Being involved with people and organizations, plugging into the community gives me strength, whether it's a chronic illness community or not.  Having opportunities to be creative is incredibly empowering (whether it's writing, photography, drawing, designing, etc.).

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

To the medical professionals who have positively impacted my life, thank you!  To all medical professionals:  I hope as all my good doctors have done, you will listen to and be present with your patients; it is an integral part of care.  Please keep up the 

good work on finding life-changing treatments and cures...and 

thank you for your long hours and dedication!

 Thank you so much Megan! You're a true role model and we'll be cheering you on!

Love,

Maya