Tag Archives: lifelong learner

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.

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.

Tough Break

If I thought I was a hot mess before, with a fused spine, Multiple Sclerosis, breast cancer, and recent issues with my back, I had no idea it could/would get any worse. Especially since I’m a big believer in universal karma that gives us back what we put out there. I like to think I put my positivity out to the universe, and I do feel that I have always been taken care of as a result.

This week as I nurtured my back, icing it, stretching it, seeing my chiropractor and my acupuncturist, plus using my portable TENS machine at home, I started to finally feel like I was turning a corner. Then due to a 4 am wake-up call from my beloved Marty  and a subsequent fall down the stairs (which is not really unusual for me except I usually fall UP them) I ended up with two broken toes right at the joint where they meet the foot. I’m used to falling but usually I manage to do it without actually breaking any bones. I have had my share of scrapes, bumps, and bruises (mostly to my ego), but this is a new one for me. When I woke up a few hours later and discovered two of my toes pointing the wrong direction and bruising starting, I knew it couldn’t be good. But, it also could have been much worse.

6-8 weeks of this lovely shoe. Plus no yoga and only upper body workouts. This is a massive bummer for me. Particularly the no yoga part.

It’s true that for the next six-eight weeks, I will be very limited as far as physical activity goes: no yoga, only upper body exercises, and a lovely shoe that I must wear for the foreseeable future. Life with MS does this. I’m always working my butt off to take one step forward and then something silly (and often avoidable) happens, setting me back two steps. It’s an endless cycle.

The truth is that I am not invincible, contrary to how strong I feel at times. My MS family and I talk about this kind of thing a lot. We can do lots of difficult things because we are focused when we attempt them. But it’s the little things we do that we take for granted (like walking up or down stairs), and assume we can do them as easily as always, but that’s just not the case. Everything is harder when you have MS and even more so when you can’t feel your feet. Patience is easy to preach but hard to practice, specifically for someone like me, who likes to keep her body healthy and moving.

In a way, this fall happened for a reason. I tend to push myself too hard and seldom take time to rest. I often need reminders to slow down because when I’m feeling strong I just keep pushing. My body has been through a lot, and I have worked it hard even through cancer. I am 100% aware (now, if not before) that I need to give myself a break (no pun intended), not put so much pressure on myself, and be grateful for all the things that I can still do.

This is just another minor setback and I have no doubt that I will come back stronger than ever, both mentally and physically. A friend of mine shared this ancient Chinese Proverb with me, because he sensed I was feeling low: “Fall down seven times. Stand up eight.” It’s definitely the story of my life with MS, but I’m so glad he was quick to remind me. It’s what I do, and what all warriors do. As much as I may have wanted to throw my hands in the air and give up about a gazillion (or at least 40) times in the last 14 (+) years, I refuse. It’s not an option. I know I’ll rise, stronger, wiser, and hopefully with more self-love and patience when I get to the other side of this.

Plus, at age 45 I finally can say that I have broken not just one bone but two… at the same time!

Frustration

Ok. I admit I am not the most patient person, particularly when it comes to myself. I have never felt pressure to accomplish anything by anyone except me. That doesn’t mean I don’t feel it, in fact I feel that the pressure we put on ourselves is way worse than what comes from external sources such as parents, siblings, bosses, or even our own spouses.

This is not a new issue for me. I have been doing this my entire life. It’s a result of being a perfectionist. I’m not talking about simply being happy when you feel like you’ve done something perfectly. That’s a pleasant feeling for most. But for a true perfectionist, it’s so incredibly difficult to ever feel satisfied. It’s actually an illness just like depression and OCD. I got straight A’s in school, not because my parents insisted or rewarded that behavior with anything more than “Good job!”, but because I had to be perfect.

That behavior came along with me through my working years, especially as a teacher. I would have felt that I was doing a disservice to my kids if I didn’t do the job with the passion and dedication that I did. And that meant spending more hours at school than at home, and spending more time with my students and co-workers than with my own husband. Feeling satisfaction with my accomplishments that feel imperfect to me (as I compare myself to my past self) has not been an easy obstacle for me to overcome. It’s hard work and I work on it every single day.

So why am I bringing this up this week? Well, as I write this, I am heading into the third week of dealing with back spasms and soreness. For most people three weeks is not a lot of time. As a former teacher, I thrive on schedules. My “job” since retirement is staying strong and volunteering. I’m lucky enough to have an amazing trainer (the best!) who knows how to work with any and all medical conditions. But I have canceled my volunteer shifts for three weeks now, and I miss my furry friends!

Feeling unsettled and off my schedule is one of the hardest things for me to deal with. With all my follow-up appointments with my oncology team happening last week and this week, I have added in chiropractic care and acupuncture. And while I’m still working out with my trainer, I’m not able to go all out right now, and I miss that. I miss my at home workouts that now are amounting to little more than stretching and gentle yoga moves, and I’m missing my yoga classes. I guess that’s ok since so much of my time has been focused on getting over this hurdle with my back. I wouldn’t have time to do much more anyway considering how many appointments I’m running to.

In addition to feeling out of sorts because of the whole schedule thing, I’m frustrated. I’m stronger than I’ve been, maybe ever but I am learning that these things happen and I need to take a step back and allow myself the time to heal. This body of mine has been through a lot in recent years: Multiple Sclerosis, Spinal Fusion Surgery, and Breast Cancer just to name a few… When I look at things that way, it makes the current situation so much easier to tolerate. I am, after all, only human. And despite it all, my sippy cup of lemonade will always remain half full.

Unfortunately lately the time on my mat is spent with my foam roller, ice packs, and my portable TENS machine. 🙁

#LifeWithMS

Wednesday, May 31, 2017 is World MS Day. On this day more than any other day of the year, I stand in solidarity with my MS brothers and sisters, each of us doing something in our own individual ways to help raise awareness of this often invisible, consequently overlooked, incurable illness. This has become a powerful movement in recent years, and the theme this year is #LifeWithMS. In honor of this theme, I am sharing my thoughts on the matter, as always,  hoping to impact as many people as possible, whether they suffer from MS, have loved ones who do, or who don’t know anything about #LifeWithMS.
First of all, Multiple Sclerosis does not discriminate. Not by race, ethnicity, gender, socioeconomic status, sexual orientation, or otherwise. No one is immune or exempt from the possibility. Although most people are diagnosed between ages 20 and 40, there are no rules and it can happen way earlier or way later. Additionally, having MS does not preclude anyone from being diagnosed with other serious conditions… a fact I always knew but learned first hand having recently completed treatment for breast cancer.

My #LifeWithMS has taught me so much about myself, my friends and family, and the world in general. Because the vast majority of my symptoms are invisible, I find that I am treated very differently than the MS patient who relies upon a walker or a scooter because those are devices the whole world can see. My experience with my sisters and brothers who rely on assistive devices for ambulation is that generally other people are kind and considerate, and amazingly helpful because they can see that there is something wrong. I am generally not afforded the same consideration because looking at me, most people wouldn’t know I have anything wrong with me at all (but my therapist knows the truth!). In fact, I often get the evil eye when I pull into a handicap parking spot, and have even been questioned about it by perfect strangers. I have been dealing with this for a long time, so I no longer feel the need to engage with others or defend the fact that I am, indeed, disabled. The office of social security, the motor vehicle commission, my doctors, and the state of NJ all acknowledge it, and all these years later I don’t really give a crap if a random busy body watching me park my car does or not because I’m too busy trying to live my very best #LifeWithMS.

My point is that just because you don’t see something, it doesn’t mean that it isn’t there. I mean we can’t see gravity, but I assure you it’s there, and I don’t think anyone would argue that. So am I supposed to present an enumerated list of my symptoms to all who meet me so that they know that I suffer on a daily basis? And I do suffer from many difficult to manage symptoms, yet I always hear the dreaded “but you look so good!” My internal response is always the same: Damn… I am a great actress! (or else I think and you don’t look dumb, but you are!)

#LifeWithMS includes managing crippling fatigue, deep neuromuscular pain, bladder issues, “painsomnia” (self explanatory I hope), neuropathy (numbness, tingling, weakness, lack of coordination) on my entire left side plus my right foot, insatiable neuropathic itching fits that have left me raw and scarred all over my body, constant vertigo, muscle spasms in my legs and intercostal muscles often known as the “MS Hug”, and the list goes on and on. But when you see me out you won’t know it, because I am an actress and an optimist, and if you tell me I look great, I’ll gladly take the compliment, secretly so grateful that you don’t see me on the worst days when I can’t even remove myself from the couch.

Staying strong is my MO.

My #LifeWithMS revolves around taking care of me, and I am fortunate that I am in a position to do so. I exercise faithfully, eat well (but not without my cheat days), and I meditate. The only thing predictable about MS is its unpredictability and as such, the things I do are the only things that are within my control, and staying strong (both physically and mentally) is my only weapon.

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.

Of course, I can’t talk about my #LifeWithMS without talking about the incredible support system that surrounds me. I have a devoted partner, a loving MS family, a handful of beautiful friends who have stayed the course with me, and some very special family members as well. Without all of these awesome members of my team, I would be a very different person.

The most important member of my support team is this guy right here… he is my everything.

The take-away for today, the thing I most want to emphasize is that #LifeWithMS is no less worth living than life without it. I still smile endlessly, laugh without abandon, and love with all my heart. But more importantly, I am infinitely more grateful for who I am and all that I have. MS or not, life is what you make of it, and as for me, I prefer to sip lemonade over sucking lemons. Don’t you?

My MS sisters. They are absolutely the best friends I could ever ask for.

Perspective

This past week I had a few rough patches. One day I found myself telling my MS family, and they all offered me comfort in the same loving way they always do. I thanked them and told them it was all good because tomorrow is a brand new day full of possibilities. Then another day, as we all checked in with each other via text, the norm on days when we don’t see each other, I found myself when asked how I was doing, responding that I could complain but I don’t. It’s not an act or something I put on in front of people, but rather absolutely the true and honest way I live my life.

(MS) Family is everything. My girls, my sisters, my angels. They saved me and showed me how to live as Rennie.

Every day when I sit with my journal and write my gratitude list, it seems to get longer and longer. Obviously I am grateful for the most amazing husband and partner, and the life we have built together. But beyond that, I’m grateful for things most  people don’t even think about… the perfect spring day photo field-tripping with my photog buddies, an awesome workout when my trainer says things like “MS? What MS?”, a body-encompassing hug from the ones I hold dear, doggy kisses (even when I’m frustrated about cleaning up another poop in the house), and even despite MS and breast cancer, I am so incredibly grateful for my health. It is precarious at times, but I have learned to slow down and nurture it, my relationships and how they have changed as a result, and the family I would never have found if I had perfect health!

My sneaky friend Marlene caught me thoroughly making the best of the photo field trip “barn tour” we took last week.

It’s so unfortunate that many people are never given this kind of eye-opening gift… one that comes from a difficult life circumstance but makes you see everything differently. I was that person until MS forced me to give up my beloved career. And even then, it has taken me years of processing and learning how to accept myself in this new light. I genuinely feel lucky for the gifts that I’ve been given through an experience that was the hardest thing I ever had to go through. I will never, ever regret the passion, energy, sleepless nights, and endless piles of work that made me Mrs. Rankin, the teacher, because I have so many beautiful people in my life because of her.

Mrs. Rankin with some of her all-time faves at their very last Walk MS before graduating.

But Rennie, the human being, has learned how to be satisfied with her best effort and she is not (quite as) obsessed with being perfect. She appreciates every moment of every day, whether she is spending time with former students, friends, and family, or spending the day cuddled on the couch with her pups. This girl knows how lucky she is that she has the opportunity to take care of herself how and when she needs without losing sight of that because she always took care of everyone and everything job-related before anything else, including her own wellness. She always sought work/life balance but she just couldn’t make it happen. Nothing could. Except MS.

Yoga has definitely been something I have leaned makes me feel better, and has also helped me get to know who Rennie is. I’m far from perfect, but it is called a practice for a reason!

Fighting a battle against MS is not easy, and certainly made harder when breast cancer was added to the mix. But again, I learned so much about who I could count on as part of my “ride or die” team, and also about myself and my own priorities. What I know for sure is that every single day is a clean slate and offers a whole new set of opportunities for each and every one of us. Instead of dwelling on what I miss about being Mrs. Rankin, I look at how much better it is to just be Rennie. I mean, my students are still growing up in front of me and doing some massively impressive stuff. And I get to experience it totally differently because I am Rennie. I don’t have to wake up at 4:45 in the morning and be within the confines of a classroom to continue my work as a teacher. I can really enjoy nights and weekends without the pressure of the job constantly weighing in the back of my mind.

New possibilities every single day…

Now I’m not saying I was miserable when I was Mrs. Rankin because that would devalue everything I did to be the teacher I was. I loved every second of it, but I just didn’t know how much more I could love life. And I do. I take nothing for granted because there are no guarantees ever.

Life with this guy since I stopped working just keeps getting better and better.

These days I’m smiling a whole lot more, laughing out loud (often boisterously and without fear of being stared at), and definitely loving those who have stayed the course with me much more deeply than ever. Unfortunately, sometimes it takes a scare of epic proportions to gain the kind of perspective we all need to live a genuinely happy life. I’ve definitely had my share of these “scares” and oddly enough, I am happy that I have, because I am a better person, in a better place than I ever thought possible.

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!

Journaling

I’ve always been a writer. I have stacks of journals from my younger years when I was very consistent with my writing. I have sporadic journals that take me through my college years and the years immediately after college. Then when I became a teacher, there was no time for being reflective about myself as I had too many tasks on my plate. Between the grading and the lesson planning and the prepping of lessons and the emotional (and physical) exhaustion from worrying about my students more than I did about myself, it just kind of slipped by the wayside. Kind of like reading for pleasure…but now I find myself in a completely different place and even though I do a ton of work on myself, both physically and mentally, I do not commit it to paper. 

Just a few of my journals from days gone by.

So while I was recovering from my recent surgery, a box arrived at my house. When I opened it, I discovered a beautiful journal. More specifically a “daily greatness yoga journal: your master plan for a beautifully conscious life.” Full disclosure here: I do sometimes spend hours of sleepless “painsomniac” time late at night shopping, and I recently had been looking at journals. This one certainly looks like something I would purchase for myself, but had I? I spent some time looking through my Amazon activity, my PayPal account, and all of my other banking only to discover that I did not purchase this journal for myself. What I came upon after being asked in a vague way if I had gotten a package that day, was that my beautiful friend Mary chose this journal for me. 

When I brought it to show her how perfect this journal is, she loved it so much that she bought one for herself. Mary and I have a unique relationship in that we laugh over silly things like we are a couple of 12 year-old kids, but we also have very deep conversations where we become self-reflective. And that’s what this journal is all about.

When Mary’s journal arrived, we got together to talk about it and how we intended to modify certain parts that are pre-printed so that it would be more beneficial for us. One of the exercises in the beginning of the journal included writing letters to ourselves about all that we hope to be and accomplish in the next year, and then we sealed those letters up to be opened next year at this time. Everyone can benefit from this kind of activity because it allows you to tap into your own (realistic and achievable) self-expectations. We both understand that goal-setting is very different for us now that neither of us is working, but that doesn’t make those goals any less important. 

My letter to myself.

The beauty of this particular journal is that it gives great prompts for starting the day and ending the day. I’m not saying that everyone should keep a journal, but starting off the day at least thinking about things like what you’re grateful for, what inspires you, and what you’d love to do that day, automatically puts you in a position of focusing on good things. Don’t they say that attitude is half the battle? Thinking positive thoughts about the upcoming day is very grounding for me. Similarly, there are prompts for the evening that guide you into thinking about what you learned about yourself (or your yoga practice), how you could have reacted differently to a situation, what made you happy that day, or what you need to let go of, just to name a few. There’s room to chart yoga, meditation, and inspiration, in addition to the usual space to air what’s on your mind and in your heart. It’s so very different than any journal I’ve ever had before, since in the past I typically used nothing more than blank notebooks, and it’s one of the most amazing gifts anyone has ever gotten me. It shows how much Mary understands me, and my need to continue evolving and growing as I travel on my journey. More importantly, she is walking (or rollating or scootering) right beside me, which is more than I could ever ask for. 

This is just a sample, but each page is unique.

Now that I have begun the journaling process again, I am reminded of just how therapeutic it can be. I realize how good it feels to put my thoughts on paper and I love that this journal is guiding me in such a positive direction, using things like yoga and meditation, to help me see things differently than if I simply used a blank notebook. This has been the perfect tool for me to really think about myself and what I hope to be and do with my life. The timing of this gift is perfect because I have always found that I journaled most during trying times, and now as I continue my battle with MS (and now breast cancer added to the mix), I am doing it in my usual making lemonade, glass half full kind of way. 

I am in love with this graphic that comes early on in the journal.

If you don’t think keeping a journal is for you, I challenge you to try it. Heck, even Bruce has started journaling! I never thought I would be into meditation, and I absolutely hated yoga at first. But all it took was just some patience and time to figure out what works for me, and my life has not been the same since. 

There is no one more generous or thoughtful than my Mary and I am grateful for her every single day of my life.

When big changes happen in life, often it is intimidating, not to mention overwhelming. I have always reminded myself that even baby steps are still steps, as long as they are moving in the right direction. I am certainly dealing with some big challenges right now, and I could easily fall into darkness rather than light. But with a tool as simple as a journal that keeps me focused on all the positive things around me, I am finding that I have not lost myself in the darkness. I look ahead eagerly at all the great changes that will inevitably come from this bump in the road, just as has always been the case. Sometimes it just takes something small (like a prompt in a beautiful journal given to me by a beautiful friend), to keep me grounded in who I am: an eternal optimist. 

Evolution

There is no rhyme or reason to what I blog about. Honestly.  I have a list of things that I’ve kept through the years that are options to write about, but I do prefer to be more topical and I try to write about whatever moves me from week to week. I find inspiration from so many different people and events, so I never have to worry that I won’t have something to say. This week, my inspiration came from my trainer. 

When she came into my life three years ago I was a different person than I am today. I often don’t even realize the changes that I have made but today it naturally came up during the course of my workout. I consider her a dear friend and she has changed my life, and her perspective is incredibly valuable to me. 

I was enrolled in her class almost exactly three years ago, as part of a 12 week wellness program for MS patients. It was something I had always wanted to participate in but because I was still working prior to that, it was not a possibility because the program took place during the week, during the day. I walked in there in the midst of a deep depression fueled by a relapse that took me away from my livelihood. I was under the misguided impression that my co-workers were my friends and I felt completely removed and isolated from them. I missed my students like crazy and I desperately wanted to feel well enough to work, but I was struggling to regain my strength. Plus I was carrying at least 30 pounds of extra weight brought on by high dose steroids and lack of mobility. With hindsight being 20/20, I can say for certain that I was at an all time low emotional place, and I didn’t even know it. 

Then I met Diane. She was like a ray of sunshine in a sea of darkness for me. On day one, I have to admit that I was a little intimidated. After all, she is exactly what you would expect of a trainer who demands that you listen and give everything your all, and who is accustomed to getting results. As an athlete, I was used to that, but because I was as low as I was, I feared I would let her down… or more importantly, that I would let myself down. 

After the 12 weeks, I continued to attend classes with Diane, as part of the benefit to having completed the 12 week wellness program was having access to “graduate” classes such as Strength & Balance and Spin classes. I found the classes so empowering because they were allowing me to begin taking control of my body again. The more empowered I became, the harder I worked, and the better I felt. Additionally, I met a whole gang of other MS warriors who quickly became the support I was longing for from the friends who turned out to be anything but. And so began the process of evolving for the teacher formerly known as Mrs. Rankin. 

One thing I know for sure is that we, as humans, owe it to ourselves to be open to evolving. Evolution, to me, simply means changing, learning, and growing. I didn’t realize how much work I had cut out for myself back then because I couldn’t see beyond the darkness of my normally optimistic soul. Diane (and my MS family) helped me begin to put the pieces of my life back together again, and thankfully, they each have taken their rightful place in my heart as we all move forward together.

I am forever grateful for the love and support of my very special MS family. They helped me find myself when I was so lost.

I am forever grateful for the love and support of my very special MS family. They helped me find myself when I was so lost.

Through exercise, I began to help my body get strong again. Through meditation, I have learned how to achieve true inner piece. And through therapy, I am still working on accepting my life as is, because it’s the only one I get. 

Don’t get me wrong: not every single day in the last three years has been sunshine and roses. But that’s ok because when I look back and I compare myself to where I was then, I am proud of the progress I have made across the board, both physically and emotionally. Looking at me, it’s easy to see the changes I’ve made physically. But equally important is the fact that I am more grounded, more centered, and I am definitely a much complete individual than I was before. I can only hope that when I look back on today three years from now that I can say the same because I’m actually pretty excited to see where I can go from here. 

I never thought I would be here today, feeling such joy every single day, and that I would be so grateful for my life as it is now. I am way different than I was three years ago, yet innately the same as I have always been. Except now I like to think that I am the new and improved version of the person I once was. As the saying goes, I may not be there yet, but I’m getting closer every day. 

#truth

#truth

The moral of the story today is that no matter how deep the darkness, there is light to be found, as long as you open your eyes to it. And after all, we can’t truly appreciate how glorious the sun is if we don’t experience the rain. Just as flowers don’t grow without rain, we as human beings don’t grow without overcoming the obstacles in our path. I, for one, hope to never stop evolving because seeing how far I have come is perhaps the most empowering feeling I have ever experienced. You should try it. You might be surprised at the new, improved you that emerges on the other side. I dare you. 

Even though I have gotten smaller, that's not what my journey has been about. It's about finding strength, hard work, staying positive, and never giving up. Even though may I have gotten smaller, my inner strength has grown exponentially larger.

Even though I have gotten smaller, that’s not what my journey has been about. It’s about finding strength, hard work, staying positive, and never giving up. Even though may I have gotten smaller, my inner strength has grown exponentially larger.