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Enough

Recently I was introduced to a book that changed my life. First I listened to the audio version, which is generally what I do. But I found the book so powerful on so many levels that I actually bought it. Now it’s full of notes and highlights because I have read it over and over, and no matter where I open it to, I find something useful. It’s called “I Heart Me (The Science of Self-Love)” by David Hamilton, PhD.

I am enough!

(Disclaimer: I have nothing to do with the publishing or creation of this book, nor do I receive anything for endorsing it!)

Basically, the book explains that self worth is about biology and is in our genes, yet somehow we lose sight of it as we navigate our way through life. We seek validation from others, but our worth is within us when we reprogram our brains to acknowledge it.  In essence, the book helps us understand ourselves, learning to be truly authentic and happy, with the goal being the ability to say “I am enough” and truly mean it.

The phrase “I am enough” has become part of my daily intentions (or mantra). Every single day when I write my intentions in my journal, I start off with that phrase, even if I didn’t mean it when I first started doing it. But part of reprogramming our brains, according to Dr. Hamilton, includes repetition of this phrase because eventually we become fully aware of it and we believe it.

Thinking about what my blog would be this week, my MS sister (who actually introduced me to this book) suggested talking about all the reasons that make me feel that “I am enough” even though people with chronic illnesses often can’t recognize these things in themselves for a multitude of reasons.

For example, many of us don’t work because we are on permanent disability. For someone who identified herself first and foremost as a teacher, when I stopped working it was hard to see that “I am enough” when the thing that most defined me was no longer a part of my life. But my legacy remains and because I am still surrounded by so many young adults who have been a part of my life since they were just teenagers, they remind me that I am enough.

This guy right here is just one of the many former students who remain constants in my life. #blessed

This book also taught me that I don’t need people to like me in order to be enough. I spent so many years putting other people before myself and I thought that doing more for them meant they would like me more, and therefore I would be validated. The truth is that validation comes from within and while I love doing for others, I don’t need to in order to be enough. Narrowing my circle of friends to those who truly love and appreciate me is so much more empowering, and no matter how much or how little I give them, I know that I am enough.

These friends never make me feel like I am not enough. #mssisters

As a perfectionist, I was never happy unless I achieved perfection.  This happened in all aspects of my life. Reading this book made me see that I need not be perfect in order to be enough. I learned that only I could see what I perceived as inadequacies and faults because I was the only one holding the microscope up to myself. As promised in this book, moving forward with self-love made the perfectionism fade. I’m not saying I have overcome it entirely but I’m a whole lot better than I used to be.

Perhaps one of the most important lessons that Dr. Hamilton taught me in this book is that I don’t have to look a certain way or be a certain size in order to be enough. Body image has long been an issue for me, and learning to love my body no matter what size or shape, without shame, comes slowly. I had to learn to think outside the stereotype I felt I needed to live up to, and instead focus on the many things I do to keep myself strong. Opinions are subjective and I might not fit anyone else’s ideal, but I am 100% me. Comparing to anyone but myself resulted in an unhealthy feeling that lead to never feeling I was enough, and I am.

It doesn’t matter what i look like. Whether heavier or thinner, I am loved. Sure, I like being thinner like I am now, but I face a lot of obstacles, and regardless of my size I am enough.

Allowing my vulnerability to show has also given me great strength. There is something very liberating about baring one’s soul, and other people appreciate it even if they can’t quite identify it. Vulnerability includes being honest and authentic with ourselves and others, and only then can a true connection be made. Even though we could get hurt in the process, it’s worth it because we learn that even though we are raw and sometimes flawed, we are still enough.

But by far the most valuable lesson this book taught me is that I need to be as compassionate, forgiving, and understanding with myself as I am with others in my life. We are always quick to comfort others when they feel they have made a mistake, but we don’t offer ourselves the same courtesy. I deserve compassion. I deserve forgiveness. I deserve understanding. I am human, too. And I am enough.

Bru always always assures me that I am enough.

This book was no ordinary book for me. What I learned is that it’s very liberating to go through the process of accepting that I am enough. In every way. If you are ready to learn how to accept yourself as enough, the minutia of daily life that normally makes you feel inferior, no longer weighs you down. The progress I have made has not been easy nor has it come quickly. But every day I am making steps to be the truly happy and authentic me that is just waiting to make her appearance. I am not sure the version of me that first listened to this book would even recognize me now, and I’m not even done yet. In the meantime, I can rest comfortably knowing that I am, indeed, enough.

As Is

Some things are so hard to explain to others when you have a chronic condition. It seems like no matter how many ways I try to describe what it’s like, it just doesn’t matter, and because others don’t understand it’s all the more frustrating for me, and thus I feel pressure when I shouldn’t.

I couldn’t ask for a better big sister and bro-in-law.

I have simplified my life because I have had to, not because I wanted to. Things I used to do with no problem have become exponentially harder as the years pass and my condition throws more challenges my way. Gone are the days when I could plan to do anything I wanted: travel to Florida to visit family, zip in and out of the city on the train, spend hours shopping, or even just have firm plans for both days on any given weekend. But alas, those are all parts of my past because I am no longer as capable.

My beautiful MS sisters showing their support by wearing my warrior shirt.

People look at me and think I look fine.  But they don’t know how hard everything is for me. When we have firm plans (such as this week when we are attending a concert), I know that I need take time to prepare, both mentally and physically. I will limit my activities so that I am well-rested and in the right mindset to completely enjoy what is planned to the best of my ability. It’s not that I don’t want to be social and do things, but everything is so hard. Even things like taking a shower and getting myself to look presentable are difficult for me for so many reasons, not least of which is what I call “painsomnia”, a condition that affects me every single night. I challenge even the healthiest of individuals to live a “normal” life with serious sleep deprivation.

This girl gets me on a level that most of my friends can even begin to understand. Notice she is wearing my warrior shirt? Love her.

Often times when we have plans, I say that I am a “game day decision” because I never know how I’m going to feel. And if I should happen to miss an event, I am accused of being purposely “absent” because I do attend other events. Unfortunately, MS does not care what things happen on which days, and frankly, MS simply does not play nice! I don’t use it to “get out” of things, but I do realize how it limits me. I know which scenarios are doable for me, and which are not.

This guy showed up when others ran away.He is my brother from another mother and I am so grateful for his friendship.

This has not been an easy lesson to learn and I have often struggled with it through the years. I walk a fine line between happily doing the things I can and want to do, and being sad and frustrated because I know that I can’t do certain things that I used to love. Being who I am, I have learned to look at everything in my life through the glass half full lens.

Sisters from other misters.

Simply put, that means that I am grateful to have had so many wonderful experiences even if I can’t still enjoy them. Instead of dwelling on what I can no longer do, I focus on what I can do. I no longer care what anyone else thinks or says about me because I have so many awesome people who accept me exactly as I am now, not least of whom is my partner in crime, Bruce, who has never wavered. Skinny or fat, makeup or none, blonde or pink, mobile or immobile, it just doesn’t matter.

The. Best. Ever.

Now I only surround myself with people like Bruce who never make me feel anything but whole… a human being not defined by my diagnoses but rather by my character. Never do I have to explain “why” because the people that matter already know the answer, and they love me anyway. I am beyond justifying it or defending myself, and with my peeps I never have to. Even though my inner circle may have gotten smaller through the trials and tribulations of life, it offers me more strength, support, and love than I ever thought possible.

Never any shortage of laughter (or love) with my guy…

Thank you to my inner circle for keeping me whole, grounded, and genuinely happy. I don’t know how I got so lucky, but it doesn’t really matter I guess. I’ll just continue to thank the universe every damn day, not for giving me MS, but for giving me all the gifts (in the form of lessons learned and an extra special MS family) that I have been given as a result.

Transformation

It’s that time of year again… the summer is drawing to a close, with everyone taking their last trips down the shore, enjoying the joys that summer always brings, while preparing excitedly for a brand new school year.

At this time every year, I like to reflect upon how insanely different my life (and my attitude) is since MS made the decision for me to retire on disability in May, 2014, after already being on sick leave for all but the first four weeks of the school year.

Back then, I couldn’t imagine my life without the career that had defined me in so many ways, and that I was so passionate about. I considered myself beyond lucky to have a job that I loved, because so many people are not as fortunate. People often told me that I was one of the few people they knew who actually liked her job. And I did. Every damn second of it.

Now that I am a few years removed from the feeling of such a devastating loss for me, I have clarity that I didn’t have before, and gratitude for everything, including the painful, emotional, difficult situation that started me on this part of my journey. I never dreamed that I could ever be in this beautiful place that I currently find myself in, happier than ever, which I could not have imagined when I was still working.

The other day, a Staples commercial came on TV advertising their usual 10 cent sale, and I was brought back to the days when I used to have lists of which retail establishment had things on sale that I needed for my classroom so that I could stock up for the year. I used to get so excited about these things, and now it hardly even phases me. I love that because it shows how much I have grown during the last couple of years.

I’m not saying that I got here without my share of growing pains, but I am saying that I understand it’s all a part of the process. Once I opened myself up to the possibilities of creating a new life, it changed my perception of everything I knew.

What I know now is that regardless of how much I loved my students (and still do!), my own family always needs to come first. I often lost sight of that as a teacher, but I don’t regret it because now I have all of these amazing young adults who make up such a big part of my life, and I love that. I love watching them venture out on their own, doing the adult thing, and spreading their wings to soar.

I also know that taking care of myself is vitally important. When I was working, I overlooked my own wellness in favor of my job and my students. Again, I don’t regret it because of the amount of love and gratitude they gave back to me (and still do), but I know that I am of no good use to anyone if I am not staying on top of my own health and wellness. This includes all the things I have incorporated into my post-teacher life: meditation, yoga, hardcore exercise, acupuncture, reiki, and healthy eating, all of which force me to put myself above all others so that I can stay strong for the long haul.

I remember the days when the weekends meant nothing more than time to grade, write lesson plans, and create dynamic presentations for my classes, leaving no time to actually enjoy spending time being fully present with my loved ones. Once again, I have no regrets about how I lived my career because it’s what the kids deserved and I don’t know how to do it any other way.

But now… now life is better than I ever thought possible. My circle of friends has changed, but in a good way because I am surrounded by other people who take nothing for granted and never waste an opportunity to laugh and smile because we are grateful for the life we are living, regardless of whether we chose it or not. I am more in love with my husband than ever because we have been given this incredible gift of time together. Hell, we even booked a vacation in September, something we have never, EVER done before. Some small part of me still feels like a rebel for doing it, but no matter how much time passes, I guess old habits do, indeed, die hard. But lucky for me, I have worked very hard to help these old habits go by the wayside.

The transformation from Mrs. Rankin to Rennie has not been an easy one, but it is ongoing and I’m getting better at it all the time. I have been transforming my entire world: physically, mentally, and spiritually for the last few years, and my progress has been slow but steady, and that’s ok. I know that as human beings, one of our biggest challenges is having the ability to change according to our life circumstances, good or bad. I’m not going to lie and say that the process has been an easy one, or that I don’t have my moments of weakness, but it does get easier with time and with the determination to live my very best life possible. Rather than crying about the fact that I am not going back to work this week, I am happily wishing my former colleagues the very best of luck as they begin the new school year. Life is, after all, what we make of it, and I am making mine everything I want it to be. So who wants to join me in a glass half full of lemonade?

The sunrise over the Raritan River by Rutgers University, a very symbolic photo at a place that will always hold an extra special place in my heart.

Relative

I hate it when people say to me that they feel bad complaining about things to me because “I deal with so much”. On the one hand it is kind of sweet of them to say that, but on the other hand, I’m still a human being and friend, and my problems don’t preclude me from being able to listen to others and offer my advice.

The truth of the matter is that everything, EVERYTHING is relative. I understand that on the surface people might think that their issues are unimportant but, as I always say, the only person you can compare yourself to is you. And that goes for every aspect of life. When one of my MS friends tells me that her knee actually started bending (after lots of hard work) when it hadn’t bent like that in years, I get so excited because relative to her past, it is huge. She may as well have run a marathon, as far as I’m concerned. I never compare anyone to me, nor do I compare myself to others. It’s all about personal progress, and the same goes for personal hardships.

I realize I have had my share of personal hardships, but I don’t look at things that way. I am of the mindset that my lot in life is exactly that: mine. It’s unfair to compare myself to anyone else, and if I did I would be a completely different person than I am today.

The fact of the matter is that I don’t look at other people and compare them to me, questioning why I have been dealt the hand I have while others have a seemingly “better” hand. Problems are problems, and like assholes, we all have them. Mine are no more important than anyone else’s, and in fact I’d venture to say that mine are easier because I’ve had to deal with so many through the years, and I have gotten pretty good at handling them in my usual glass-half-full way.

So it’s not like I’m saying I want more obstacles to overcome, but I never thought I’d appreciate them the way I do, because each one makes me a better version of me. The strength I’ve derived from all I’ve been through makes me a kinder, more sensitive, more understanding human being, and overcoming the bumps along the way is perhaps the most empowering feeling I have ever had.

The challenging parts of life are not easy, but the way we respond to them molds us into who we are. It’s unfortunate that so many people can’t see the beauty that awaits when you overcome those difficult times because it is powerful and we all deserve to experience that feeling. Plus giving up, for me, is simply not an option. We get to choose our fate (in a way) by how we handle our life circumstances. Why would anyone not choose empowerment over the alternative?

Lucky to have this guy who supports me through it all, which makes everything just a little easier.

Disability

I hate it when people get the wrong idea about people on disability. I mean, I know there are dishonest people in the world who try to take advantage of social programs, but my friends and I do not fall into that category.

As a teacher, I was considered a state worker, and therefore not eligible for state-funded disability programs. I have no idea why, and it makes absolutely no sense to me at all. I contributed to it through my paycheck yet I could not collect from that fund. Instead, I could only collect disability through a private insurance company, with premiums (that increased every single year and even doubled when I turned 40 years old) deducted from my paycheck. There is nothing like working your tail off and bringing home less money year after year despite being at the top of the salary guide, with a Masters Degree, and longevity in the district.

As much as I cursed it every time I saw my paycheck, I was grateful for it because although it was not the same as my paycheck, it would allow me to at least pay my bills if ever I found myself unable to work, and that was the thought that I carried with me to justify it. But the first time I needed it, I called to report my disability, and was appalled to say the least. I explained to the desk monkey (sorry if this offends anyone but what follows will make you feel the same way I’m sure) that I was having an MS exacerbation. The questions that followed: How long will you be out? Are you having surgery? Did you have a baby? How can you not know how long you are going to be out? My answer: Ummmmm because I have Multiple Sclerosis. Clearly there was nothing in the list of scripted maladies that the desk monkey could equate my situation with, and he knew nothing (and I mean absolutely nothing) about MS. Not feeling well and talking to a bunch of idiots is not an easy thing to do while trying to maintain my composure. I ended up staying on disability for the first half of the school year, and I even self-paid the premiums while I was not collecting a paycheck.

Seriously. Handwriting all this with a tremor is stressful and overwhelming, to say the least.

Yet I still couldn’t complain because as much work as it was for me to get these people to understand how unpredictable MS is, I was able to pay my bills (with the help of my husband) while I was trying to rehabilitate during my absence from school. I happily returned to school, glad that I was strong enough to get there, and thinking I would never need to file another disability claim for the rest of my career. That’s me, the girl with her glass half full, thinking she was exempt from the course of MS progression, but the sad truth is that very few people have benign MS that never relapses, and I’m not one of them.

Fast forward to the year 2013. I found myself in a worse position than the time I was out on disability six or seven years prior. This time I filed my claim, pretty much without incident, and I was assigned a claims manager who still works with me to this day. He understands my situation, and is very kind, always starting out our conversations asking me how I have been feeling. He understands (I think) that I am not going to get better, and considering that I am recognized as disabled both by the state of NJ and the federal government, things are slightly easier. Yet every year… every SINGLE year, I am required to fill out an extensive packet documenting my “activities of daily living”. This might seem a small task but for someone with MS, it is overwhelming to say the least. It contains about 10-12 pages, that must be handwritten, which is not easy with a hand tremor that reduces my ability to write. When I see the envelope come in the mail, I cringe and panic, and I wonder when they will understand that MS does not get better. It progresses, even in small ways, but those small ways can be very difficult to manage despite the fact that I am not working.

This is me, every year…. hardly able to crawl out from under the massive pile of paperwork required to document the fact that I still have MS.

If my experience with my private disability plan is any indication, we have made some progress as far as awareness goes, but we still have an incredibly long way to go. Multiple Sclerosis is exacerbated by stress, and the constant submittal of the same paperwork does not help. I would love to see in my lifetime a day when people understand that MS limits my ability to complete even the most mundane of daily activities, and that having to justify myself all the time is no longer necessary.I mean, receiving the same packet every year is the same as asking me if I still have MS and if so, how much longer will I have it. I wish I didn’t “still” have Multiple Sclerosis, but unfortunately I will likely spend the rest of my life with it, and I am ok with that.  It would save us all a lot of paper, time, and energy (not to mention stress on my part)  if they would just get a clue already!

Bad Ass

This is definitely not a term I would use to describe myself. I mean I was the chubby kid who was bullied through elementary school and spent more time crying than laughing. My dad’s job moved us from rural New Hampshire to Bergen County, NJ (a very metropolitan area just outside of New York City) at this very crucial time of my childhood. I’m a lover, not a fighter, so I viewed the bullying as something I deserved, and cried over it in the privacy of my own bedroom. That chubby little kid never would have thought that people would look at her as a bad ass for simply living her life the only way she knows how.

Yet in the past few weeks, I have been called a bad ass on numerous occasions, which definitely makes me laugh. I mean I certainly don’t feel like a bad ass. I spend most of my time smiling, laughing, hugging, and laughing. Did I mention I spend a fair share of my time smiling and laughing? I’ve never even been in a fight where I actually threw a punch, though I certainly was pushed around plenty during those early days living in Northern NJ.

Me on the first day of school, slimmed down after a summer at camp.

I’m the rule girl. When I was working, I consistently enforced the rules in my classroom, and I’m afraid that the same attitude bled into my personal life as well. I am still bound to rules more than I’d like, but not working has made it easier for me to let certain rules slide. Still, in my eyes, that makes me boring, not bad ass. Not that I find this term negative… in fact I find it quite a compliment and also very empowering although I am not sure what qualifies me as bad ass.

I mean, I have dealt with Multiple Sclerosis quite openly for over 14 years now. I used my voice as a teacher to educate my students and colleagues, raising awareness (and money) for the cause, with my only motive being a sincere hope that the next generation can live in a world free of MS. I let them see the good, the bad, and the ugly, but I always approached it as my calling to show that overcoming adversity and rising to challenges in our paths simply make us stronger, more sympathetic, and more grateful individuals. Is that bad ass?

Here I am with my “core” MS Walkers (2010), who represented the over 450 members of our team.

I have accepted the brutal cycle that MS is… one step forward and two steps back. I have worked hard to keep my body moving, even through the times of limited mobility and function, because I am determined to stay strong. I have changed my life, my body, and how I look at exercise, fitness, and nutrition, because it takes on new meaning when it’s not about how you look, but rather it’s about how it makes you feel: strong and in control of the only things that you CAN control. Is that bad ass?

A few years ago, I endured a five hour spinal fusion and laminectomy surgery, not because I wanted to, but because I had to. This was not part what I had imagined my life would be, but I accepted it and embraced it as part of my journey because there was no choice. I worked hard to rehabilitate afterwards and get back to the place where I am most comfortable with my body. I kept moving rather than using it as an excuse to stay still because I needed to take control. Is that bad ass?

My spine and the hardware that holds it together, in all its glory!

The next obstacle in my path was a curve ball, to say the least: breast cancer. I approached it the same way I approach everything in my life. I did what I had to do, never questioning why it was happening to me. I did it with a smile on my face because of the love and support I felt in my heart. In the grand scheme of things, I knew it could have been worse, and it was a huge learning experience for me. I learned about myself and what I am capable of, as well as about the people I surround myself with. Some people live an entire lifetime without having the opportunity to see their own strength and capabilities, which is a true shame since most times we don’t know these things until we are tested to prove them. As difficult as it was, and will be for the next several years, I am grateful to have learned so much. Is that bad ass?

Post-op picture after my lumpectomy and lymph node biopsy: looking blue (literally) from the radioactive dye used to highlight the lymph nodes that were removed.

Finally, and most recently, a little tumble down a flight of stairs left me with some broken toes. Compared to all I have been through, this (although totally painful and extremely limiting to my mobility) is nothing. I laughed my way through the visit to the Urgent Care, the x-rays, the doctor’s attempt at humor (I’m not so young that I’m just growing bone overnight anymore and I must not have given enough in the collection basket that week, as this little accident happened on a Sunday), and even laughed at the silly, ugly boot which will be an extension of my body for another 4-6 weeks. It’s a small setback in the bigger picture of my life, and I just have to laugh at myself because I can do so many difficult things without consequence, but apparently walking down stairs is not one of them. Is that bad ass?

These are my toes after having been re-set by the orthopedist.

My conclusion is that “bad ass”, like beauty, is in the eye of the beholder. I never thought of myself as bad ass, I’m just living my best possible life. It’s funny that I would never label myself as a bad ass, but other people do. I’m fairly certain that the chubby girl who was so often bullied never would have thought that being pushed around by some assholes would seem so small in comparison to the real obstacles that I have had to face as an adult. And even though I don’t exactly see myself as a bad ass, I can guarantee that she sure would.

Yup. My shirt says “FC” and my socks say “bad ass”. If you don’t quite get the “FC” part, let’s just say that the “C” stands for cancer.

Nephew

Just over 28 months ago, my life most certainly changed for the better, and I never expected it to happen this way. Especially since the reason for such an amazing change entered this world at just over four pounds. That’s right… I am talking about my nephew, Lucas Scott Rankin.

 

I have a small family, and like most, we have our fair share of dysfunction. But even before he arrived, I swore to him that I would always be there to be his cool auntie, and that I’d never leave his side. And as cliche as it sounds, I have loved him from the first moment I found out about him.

It’s pretty awesome. Although he isn’t my nephew by blood, he most certainly is through my heart and soul. I have always felt a deep connection with him, and he is an endless source of happiness for me. This little guy has huge power. He has brought our little Rankin family even closer than we already were, which I never thought possible. Last year on Christmas night, Lukey gave me the best gift ever, when I heard him say “aunt” for the very first time. I thought my heart would burst right out of my chest because I had never felt that kind of pure love before, because I don’t have children of my own.

“Uncle Booce” with Lukey. Ahhhh those curls!!!

 

These last two and a half years have been a great experience, marveling at how much more he can do and how much he learns in between our visits. I have made a conscious effort to be a constant in his life because I always want him to have the same sweet memories that I do. Quite frankly, there is nothing I wouldn’t do for Luke, and I am hoping that as he grows up he will never doubt that his auntie is there for him. I will love him unconditionally and forever, and I hope he will trust me enough and confide in me because nothing will make me happier.

When I’m not feeling well, a visit from him, and now that he’s old enough, even a FaceTime call makes a world of difference and is better than any medication I could take. This past weekend, he sweetly pointed at my foot (in the oh-so-lovely boot) and asked about my “boo-boo”. Then he kissed it and hugged me, patting me on the back as he did so. Every time he says my name (Aunt Wennie), I melt because hearing it in that little voice of his is something that I have never experienced. He fills up my heart with so much love, and I find myself awe-struck by how this little boy, just twenty-something pounds, has the ability to make me smile so hard, laugh with my whole entire body, and love so deeply.

Although I wish he would stop growing up so quickly, I look forward to many fun times with him as he gets older. I envision sleepovers with me and “Uncle Booce”, and going on many adventures together. But for now, I am drinking in every last detail of him while he is toddling around, talking up a storm, repeating everything (uh oh.. time to start censoring my potty mouth!), and playing trucks everywhere. Plus, nothing in this world feels as good as Luke’s little hand in mine, and I will savor that feeling for the rest of my life. Even though we don’t share the same bloodline, we do share a last name. That automatically makes him the littlest (and most adorable) member of #TeamRankin, and I know that he will someday learn that membership does, indeed, have its privileges!

I showed Lukey the leaves that look like hearts so he pointed at it and told me “heart”. He has mine, that’s for sure.

 

 

 

Partner

The other day, Bruce turned to me, and asked me why I always refer to him as my partner rather than my husband.  It’s not that he was upset or angry about it, it’s just that he was curious. And looking back at the many blog posts that include him in any way, I do always refer to him as my partner.

I looked at him and I almost didn’t even know where to start explaining. I mean partner encompasses so much more than saying husband or spouse. By being partners, Bruce and I share every single aspect of our life together.

This is the exact spot where Bruce first saw me walking across campus, and last summer we went back to the scene of the crime!

By simply calling him my husband, no one would know that he is my care partner. He is the one I lean on when I’m not feeling well, and he puts everything else aside for me during those times. He supports me physically when I’m not well by picking up my share of the slack around the house while still working full time. He does this without complaint, knowing that if the roles were reversed, I would do the very same for him.

Calling him my husband doesn’t reflect the depth of our friendship, that started when we were just 18 years old. He was my best bud for years before we started dating, and the history we shared during those years made our relationship much more special when we finally did get together. That’s how I knew it was for keeps because he’s still my best friend. He’s the first one I turn to when I need love and support. He makes me laugh so hard that I cry (and maybe even pee a little bit… but that could be MS too!😉), and having him beside me, even if we are just sitting in silence, provides me with the kind peace of mind that calms me to my very core.

Saying that Bruce is my husband can’t possibly do justice to the guy who loved me even when my entire life revolved around my job… and even more when I added graduate school to the mix, taking away more time together from the already limited amount we had. Even when we were spending time together, I was always thinking about school or grad school. I was seldom fully present, but he supported me anyway because that’s what partners do.

Being my partner means that he has chosen to continue on our journey together despite the many obstacles we have faced. Being my partner means sharing the burden equally, and that burden can be pretty weighty at times. But when we each take half, it’s not so bad. Bruce wears many hats in our world… best friend, care partner, husband, fiancée, soul mate, and partner.

A reenactment of one of the very first pictures of us, taken in New Hope, PA.

I can’t even remember what it’s like to not have him as my partner, or when his title evolved to partner. What I do know is that having him as my partner in life has made everything better, including MS and breast cancer. Having him as my partner means I smile wider, love harder, and give thanks every damn day that he is there.

The truest sign of our partnership is that we complement each other so that each of us is better because of the other. With all that being said, it is true that Bruce is my husband. But he is my partner in this life, and being my partner entails way more than just being my husband. Plus, he’s the captain of #TeamRankin… and as we all know, #TeamRankin never loses!

Ocrevus

So I’m not your typical patient. I don’t blindly do what doctors recommend unless I have spent time learning and researching. Hence, my recent decision (which I still stand firm on) to not take the recommended Tamoxifen as part of the “protocol” for breast cancer treatment. I have learned to be a professional patient through my years of experience living with Multiple Sclerosis.

I happen to have a unique relationship with my neurologist, in that we discuss in detail the treatment options that are being created and tested in clinical trials. We always have. I appreciate that he is always willing to answer my questions honestly, and he fully supported my decision to participate in the clinical trial for what later became known in the MS community as Gilenya. He understands that I am proactive, and that I can intelligently decipher data to reflect the truth, not just the numbers. It’s a relationship we have built over the last almost 13 of my 14 years living with MS, and I trust this man implicitly as the “captain” of my healthcare team.

While my MRIs have been “stable”, this only means that the changes are not yet detectable, and I have had two major relapses in the last four years, one of which was most definitely a brain stem occurrence, which is generally difficult to read on MRI anyway. I always use the same facility for my MRIs, for the sake of comparison, but they don’t use the most powerful machines available. But that part doesn’t even matter because regardless of what the MRI says, clinically, (while not horrible) I am not doing as well as I was several years ago, despite me working harder and harder on the things I can do to help myself.

For years now, I have been watching a new MS treatment (Ocrevus) through development and clinical trials. I do things like set up google alerts so that any time the drug is mentioned, I get a link to the article sent to me. I then read and research more on Google Scholar. I combine data with testimonials, and of course discuss these things with my neurologist every chance I can get. On paper, it seemed like this was going to be a perfect fit for me. The efficacy resulted in NEDA (no evidence of disease activity, something we all strive for since there is no cure) with a very impressive safety profile. Initially, it was due to be approved in December of 2016, but due to “marketing issues”, the date was pushed to March of 2017.

A lot of things happened in that time. Like breast cancer. When I found out I didn’t need chemotherapy and that radiation would do the trick, I was so incredibly relieved, not just for the obvious reasons, but also for the fact that chemo would have excluded me as a candidate for Ocrevus. Additionally, however, it was discovered that in a trial comparing Ocrevus to an existing MS treatment (Rebif), there were six cases of breast cancer in the Ocrevus arm, and none in the Rebif arm. As a result, the packaging insert contains a warning about possible malignancies that could not be explained in the trial. The insert states that women should be screened regularly for breast cancer, and I thought, “Well damn! No one is going to be screened more regularly than I am from here on out,” convinced that I was still a candidate.

Last week I had the appointment that my neurologist and I had carefully scheduled, hoping that by the date chosen, all the red tape would be sorted out, both by insurance companies as well as by the hospital’s review board, which it has been. But when he walked in the room, I knew from his face that the conversation I had feared was about to happen.  He looked at me and he told me that we were going to have a very difficult conversation, and one he had been dreading for some time. The bottom line is that my neurologist is not comfortable putting me on a treatment that caused malignancies when I have just finished treatment for breast cancer. This was a short study, just two years, and that’s a pretty high number of breast cancer diagnoses in a short amount of time. He also admittedly said that because the study was short, he fears longer term effects which are not yet available until extension trials produce more data. He said he would do it but he would worry about me all the time. And to be perfectly honest, if this guy, who has had no motive other than my health for 13 years now, is not comfortable, then neither am I. That’s how much I respect the relationship we have built, even though I was (and still am) utterly devastated. My dreams of NEDA came crashing down, and I found myself crying buckets of tears of disappointment.

Instead of dwelling on that, because he’s not all that comfortable with tears, he told me about another treatment in development that he likes very much, probably because he knew I’d write it down and do the same due diligence I always have. When he left the room, he acknowledged that my reaction was better than he had anticipated, and I told him that’s great, but I’m just going to sit in here and cry a little more before I come out of the exam room. I was mostly joking but I did my share of shedding tears. I had placed all of my energy on this and for a brief minute, very out of character for me, asked why I had to get damn breast cancer. But only for a minute because that’s not me. I moved on. Reality is what it is, and I am grateful for stable MRIs even if clinically I’m not as stable as the MRI reads. When I finally emerged from the exam room, the nurses started in, joking with my neuro saying things like, “Why did you make Rennie cry?”. It’s just one of the many reasons why this is my chosen team to manage my illness.

When I left the MS Center, I felt lonely, afraid, and pissed off that breast cancer robbed me of this dream I have been chasing for so long. At that moment, it didn’t matter how many people in my life make me complete and happy every single day. I chose to give myself a very brief pity party, which was pretty easy since Bruce was away, and my friends weren’t around. I never overstay my welcome at these parties, but I’d be lying if I said I never threw them. Being human means that we experience all of our emotions, good, bad, and ugly. And believe me, I am an ugly cryer! So I did a little wallowing, and I came out the other side with more perspective and more certainty that the only predictable part about MS is its crazy unpredictability.

Although I am not a candidate for Ocrevus (sadly), I applaud the fact other patients are benefitting from it, because our options as MS patients are so very limited. In fact, this is the first treatment that is approved to treat progressive forms of Multiple Sclerosis, which definitely makes me happy when I look at the big picture. So instead of focusing on myself, I simply turned my focus to the greater good of it all. Scientists are making great strides all the time, and while there is no cure, there are new treatments in development all the time, and maybe the next one will work for me.

In the meantime, I remain committed to my wellness, both inside and outside. I nourish my spirit and my soul as well as my body, because that’s the one thing that I have control over on this crazy journey. Like I have said many times in the past, this is not how I envisioned my journey, but it’s mine to walk, and I choose to do so with a smile on my face, love in my heart, and a glass of lemonade, half full (of course), in my hand (even if it is a “sippy cup”).

Whether it’s hot coffee…

…or a cool beverage, I always drink from a “sippy cup”. I drop things way to easily and I trip over nothing, so this is our accommodation for me not spilling everything everywhere.

Tamoxifen

Although I have completed the bulk of my treatment for breast cancer, there are still decisions to be made regarding what’s next. Now I know I’m no ordinary patient, because living with MS for 14 years now kind of gives me professional status. I’m no amateur at sifting through the data and the numbers and the information that patients are often bombarded with. I am not the one who blindly follows whatever the doctors say, without asking questions and doing my own due diligence.

Here in the US, there is a standard protocol for treating breast cancer (written by all the best breast cancer specialists from all the top cancer institutes), depending on many factors, and there is even a little flow chart so you can map out what your treatment looks like. Some of the factors that affect the protocol include the size of the tumor, the pathology of the tumor, and the Oncotype score of the tumor, which indicates the likelihood of recurrence.

This is what the flow chart looks like, with markings from my Oncologist indicating where we were at the time of that visit.

For me, my treatment began with the lumpectomy and lymph node biopsy. Then once I was healed enough from my surgery, I completed six weeks (30 treatments) of daily radiation. The next step, presumably, would be taking a medication, often referred to as a “hormone moderator” or “endocrine therapy”  (Tamoxifen) for the next 10 years, because my cancer is fed by estrogen. This is the part I take issue with. As an MS patient, I am no stranger to medications, and I’m always balancing out the risk versus the reward for each one. I also happen to be very sensitive to side effects so this process is always very difficult for me, and the decisions are never made without Bruce being on board.

We have been discussing this medication since January, knowing full well that I wouldn’t start taking it until after I completed radiation and we had our little celebratory vacation. We have been talking to anybody and everybody about their thoughts: doctors, nurses, survivors, and each other. We did our own research separately online, too. I allowed myself 20 minute time frames to do this, because otherwise I could easily end up in a rabbit hole of information, obsessing for hours. My concerns center around the side effects, many of which mimic MS symptoms, so I became anxious that everything would be magnified for me. There is little to no data out there about the effect of this medication on MS patients. Many otherwise “healthy” (aside from breast cancer) women are miserably torturing themselves on a medication that for me (and my specific case), is simply not worth the “reward”. But I also happen to be a “rule girl” so I wavered minute to minute until very recently.

We did a virtual 5K (which ended up being over 5 miles) with my photo friends. Too many photographers in one great place means that there are detours everywhere!

Now I’m not saying my decision is the right one for everyone. But what I am saying is that data can be easily manipulated, and often is, to make things seem more (or less) favorable. When four women out of 1000 on Tamoxifen have a recurrence of breast cancer as opposed to seven women out of 1000 not on Tamoxifen, the percentage is low. Yet when extrapolated out far enough, the difference between 0.4 and 0.7 becomes upwards of 40%. And that’s how patients who are already at their most vulnerable and most dependent on their physicians, diligently do as they are told without questioning it. Because it’s scary. But through my journey with MS, I have learned to ask questions, and to advocate for myself because no matter how amazing my medical team is, once I am not sitting in front of them, they are not thinking about me or my case. They move on to the next patient, and I am the one who has to live with the decisions I make. And the decision I have made is to NOT take Tamoxifen.

I had a very small tumor, no genetic markers, no family history, low Oncotype score, clear nodes, and clear margins. All of this makes my risk of recurrence low. Plus I will be monitored frequently in the months and years ahead, and therefore I feel comfortable with my decision. Bruce and I made this decision together because we are a team, and I know that I’m not walking this journey alone. My quality of life affects him, and we both agree that quality of life trumps all. I know that according to medical professionals, I may be taking a chance, but it’s worth it. Plus, I know that together Bru and I are strong enough to beat anything, and we already kicked cancer’s ass once…

Team Rankin always wins. We have proven it already, but we will do it again if need be!