Tag Archives: care partner

Gratitude

This week, my MS sisters and I were honored to participate in a video project intended to be shown at a very prestigious annual fundraiser for the MS Center where we are patients. Then to add to my excitement, I was asked to give a speech to the crowd, right after Daniel Rodriguez, the singing police officer who performed the national anthem on almost every major event here in the tri-state area in the wake of 9/11. The whole campus of the hospital is transformed into an elegant venue, as it becomes “an evening in the vineyard”, the biggest fundraiser of the year for our MS Center. Tickets are not cheap, so just being there is an honor in itself.

His voice blew me away!

For me, I am in my element when I am in front of an audience, using my skills honed through years of teaching, educating others. I love being able to share my personal struggles with others so that they can see that everyone struggles in so many different ways. I like seeing light bulbs go on in people’s minds as they make connections that they wouldn’t have made without having me standing in front of them as a visual. I like being able to speak on behalf of so many, especially when the audience is receptive (something I didn’t experience very often as a teacher!).

I’m very comfortable at the podium.

Remembering how despondent I was when I tearfully resigned my teaching position, makes me extra happy to be able to speak at events like this one. I have often been told that I’ll always be a teacher, except now the world is my classroom and my students are not held to the confines of a high school setting.

On the video screen at the entrance to the event.

Throughout the night, I had perfect strangers coming up to me and thanking me for talking to them, and telling me how inspired they were. They were the ones opening up their wallets to support the cause, yet they were quick to tell me how much they enjoyed listening to what I had to say. And all I could do was thank them right back, not only for their compliments but also for their generosity. I witnessed the kindness of strangers in the form of more handshakes and hugs than I could even begin to count. It’s nights like that when I am reminded of how positivity is contagious, and I love that. There was no pity or sadness, but rather celebration of good people doing good things for a community that desperately needs it. My heart literally could have burst out of my chest with gratitude.

My sisters.

As for me, I enjoyed a beautiful night filled with good food, good wine (and beer), and amazingly generous people. Plus I spent it with my MS sisters and my partner in crime, who rearranged his work schedule to be my date. At one point during the evening, I looked around just to take it all in so that I could lock it away in my memory for safe-keeping. At the end of the night I should have been exhausted but instead I found myself invigorated. I’m pretty sure that’s what people mean when they talk about being “high on life”.

All four one. Taken from our video.

With all that I have been through in 2017 with my breast cancer diagnosis and subsequent treatment, this night was exactly what I needed to kick-start a happier, healthier ending to what might have been the most difficult year I have ever had. No medication or treatment plan could have left me feeling better than I did when I left this event. I am so glad that I stopped to really feel the love because the memory will sustain me for longer than you could even imagine.

Just a sampling of the goodies. (photo credit: Carla)

(Also, sending a big shout out to my former student who served me some awesome craft beers. Thanks, John!)

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.

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.

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!

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!

Diagnosiversary

In preparation for my blog this week, I decided to read what I had written about my diagnosiversary last year and the year before, because I just can’t let June 2 slip by without acknowledging it. I read through the entry, and I realized that on this, the 14th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year (which I shared from the year before) on the topic. The feelings I experienced on that day, and during the weeks and months that followed, are still as raw and as powerful as they were 14 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I have shared in years past. Nothing has changed about that day, except year 14 has brought many more challenges (like breast cancer… an entirely different diagnosiversary!), but it has also brought many more rewards for which I am grateful every single day. 


This is the sign that marked my 14th radiation treatment, and I think it is a perfect representation of how I feel 14 years into my journey with MS.


June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life.


Every year on June 2, I am brought back to that day, now [fourteen] years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me.


So we got in the car, not talking to each other at all. On the way to the neurologist appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?


We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk. I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room.


The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate.


We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours. We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted or expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.


Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but [14] years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.


On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.


For [14] years I have acknowledged the importance of my diagnosiversary, and this year is no different. I’m still grateful for the many gifts I’ve been given, and even though my journey has not always been an easy one, I know that every bump in the road makes me a stronger, better version of myself. I don’t celebrate the anniversary that falls on this day. I celebrate all the things that I have managed to accomplish, all the things I can do, and all the things I am, MS and all.

#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.

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!

Celebration

This week Bruce and I are finally on a little getaway alone together, celebrating all the amazing things that we always celebrate in April: my birthday, his birthday, and our wedding anniversary. This year every celebration has had an extra note of euphoria with me having completed my treatment for breast cancer just three days before the start of all the usual festivities. This entry will be short and sweet because I’m enjoying every last bit of time we have together in this rare moment of complete and utter elation, feeling like we conquered the world (that sometimes feels like it’s working against us) yet again, and nothing can bring us down. Today the moral of the story is to enjoy every moment and live happily, because you never know what tomorrow will bring. Trust me…. this is something I’ve learned first-hand! See you next week!

We love taking road trips. There is always a “beginning of the trip” selfie!

There is so much about this picture that I love.

Walking around Burlington, Vermont in the rain is still making fun memories.

No comment necessary!

One of our favorite things to do when we travel is find as many local breweries as possible.

Cloudy and gloomy to some is gloriously beautiful to others.

I can’t always keep up with Bru and his beer, especially when he orders one with breakfast. I’ll stick with coffee!

This is how we roll on a road trip!

April

Today I proudly present an entry written by my one and only, Bruce. Enjoy!


Spring is a time of renewal. Flowers and trees begin to bloom again, and animals come out of hibernation after a long, cold, and dark winter. And the month of April is the month where most of that transition occurs. That feeling of new beginnings in April has long had extra added meaning to Rennie and me, as both of our birthdays, and our wedding anniversary all fall within in a 10 day span of each other between the 10th and the 20th of the month. It’s the month of the year that has always felt as though it belongs to us, as we celebrate each other…both individually and as a couple…and begin yet another trip around the sun together. But this year, there is an added feeling of renewal and celebration, as on April 7th, after four long months, Rennie finally completed her treatment for stage 1 breast cancer that has so consumed our lives.

Here we are at the renewal of our vows on our 10th wedding anniversary. We discussed posting a picture from our actual wedding, but let’s just say that neither of us looked our best that day.

It’s been a tough time for Rennie, but as she will tell you without hesitation, everything one of us goes through, we both go through…so it’s been a tough time for me also. This has been, without a doubt, the roughest period of my life. While her MS diagnosis in 2003 was no walk in the park, that disease (except in the rarest of cases) does not kill you. Breast cancer is a foe on a whole other level. Left untreated, or treated incorrectly, I faced the possibility of losing my wife and best friend. And no matter how brave a face I put on, I’ve been scared to death since the day I first heard the words “abnormal mammogram” back in early December. But I could not let that fear consume me, because I had a job to do, and that was to be the best care partner I possibly could be for Rennie. She needed all the love, support and understanding I could muster. Thankfully, this is not a role I’m unaccustomed to, because I’ve been doing it for almost 14 years now.

One of my favorite photos of Team Rankin, taken on the campus of Rutgers University, where two 18 year olds first met many moons ago.

The job of being a care partner is not for the faint of heart, and brings with it challenges that no one is truly ever prepared for. It often means ignoring your wants and needs, and making sacrifices that no one should have to make. As I’ve said in earlier posts, this is not the life I had planned for either Rennie or myself, but it’s the life we’ve been handed. While I’d change things if I could, I know that I can’t, and I’m just grateful to be married to my best friend and the most amazingly strong person I’ve ever known. After all these years, and despite everything we’ve been through, our relationship is stronger than it’s ever been. Have all our struggles brought us closer together? Maybe. But I’d like to think we’d be in exactly the same place no matter how things had gone for us over the years.

Celebrating the last of Ren’s radiation treatments, by ringing the ceremonial gong together.

It’s been a long road from the phone call in early December telling Ren that the results of her yearly mammogram were abnormal to where we are today. There have been biopsies, tests, surgery, countless doctor’s appointments, 30 radiation treatments, and some of the most frightening times of both of our lives…because there is nothing not scary about something like cancer (no matter how soon it’s caught). But here we are on the other side of the most difficult period of both our lives, exhausted, but ready for a fresh start. A fresh start that appropriately comes to us in the month of April, the month where both of us (and our marriage) were born.