Monthly Archives: June 2017

Truth

3 Replies

Years ago when I was still a teacher early in the blissful years of my tenure at the BORO, I thought I had died and gone to heaven, having landed there after a difficult three years teaching elsewhere. I started as a long term substitute in a North Jersey high school, where I basically saved their rich asses from much parental outrage when an existing Spanish teacher left the district in a lurch with basically no notice. As such, and because the kids were used to not having a “real” teacher for so long, they really ruled the roost. I was cursed at, disrespected on a daily basis, had items thrown at me, and I had very little support. I knew that I was not meant to stay there because I felt that despite my lack of actual classroom teaching experience, I did my very best with what I was given. I then took a tenure track position closer to home, which I thought would be perfect for me. This new district referred to itself as a “suburban school with urban tendencies.” Translation: teaching in an inner city would have been a better idea. But I stuck it out for a second year because I thought it would make a difference having made a mark during my first year there. Yet even then, little discipline was handed out when students discussed my ass in front of me, or when they made me cover the auto shop where I heard things that no teacher should hear from the mouths of adolescents.

When I found my new home, word spread quickly, and the district retaliated against me because they heard that I was leaving. They were angry because I was heavily involved in advising extra and co-curricular activities, and all they could think about was filling my shoes. I was given a final evaluation that was disgusting and filled with lies, all without a single supervisor or administrator ever stepping foot inside my classroom. It hurt my ego even though I knew the truth but I took comfort in the fact that I would be moving on come the following September.

Then came the BORO, my beloved home away from home.  I thought for sure I would end up teaching the rest of my career there, which I did, even if it was cut short due to MS. A few years after I started there, we were blessed with a new school psychologist, who in my mind had always been an under-used resource, because I never in my teaching years before that, had ever met a school psychologist that had such a similar philosophy on our students than Dr. Brett Holeman.

The best of the best right here. I challenge you to find a more dedicated, compassionate, student-focused school psychologist anywhere. Go ahead and try! You won’t find it. He is truly one of a kind.

From day one, we connected because of the many students that we worked with together. While I always had great relationships with my students (even the ones that everyone else hated), I knew I was not qualified to handle many of the issues that result from the difficult life circumstances that our most at-risk students dealt with on a daily basis. I leaned heavily on Dr. Holeman for advice on how to handle specific students and circumstances, because after all, he’s was the doctor. I was just a classroom teacher. And a damn good one, too.
Both Brett and I believed (and still do) in the wellness of each student, inside and out. Each student was (and is) a complete individual with human necessities that include feeling safe and secure, and having an outlet for talking about the things that are not measured on data-based or high-stakes testing. Each student represents more than the dollar amount spent on their education, but rather a human being needing certain affirmations in order to become functioning members of the society in which we live.
 We were like-minded colleagues with an awesome working relationship, and a mutual respect for how we both viewed our population. We stayed late at school at times, always hoping to help our students with issues ranging from abusive relationships, homelessness, eating disorders, bullying, alcoholic or incarcerated parents, and the list goes on. Sometimes, I would simply join a student in his or her first session with the Doc, so that they would feel more comfortable until they could see how much help and peace Dr. Holeman could offer them. Beyond the walls of the school building, there was nothing, unless perhaps we had a brief exchange regarding one of our mutual students, or we ran into each other on a Friday night because we happen to reside in neighboring towns.
I trust and respect this guy so much, that I often referred colleagues to him when they had personal problems because he’s that good. One year around 2005 or 2006 (I can’t remember exactly, thanks to MS, but he probably knows), I went out on a medical leave due to an exacerbation of Multiple Sclerosis, and consequently missed the entire first half of the school year, from October until February. He checked on me frequently by email, and when I finally returned, he helped me work through my transition back to school. I can’t say that anyone else (except Bruce) was there for me during that difficult time, but Brett was.
We continued to work as a team in this manner until MS forced me out of work and I retired on disability in May of 2014. It was not how I expected my career would end, but sadly, MS is a progressive illness and I just was not able to perform my job the way it deserves to be done. No amount of compassion or love for my students could fix that for me.
 One day in the Spring of 2016, one of our shared former students (approaching 30 years old), reached out to me. She was about to be homeless and was desperate for support. Dr. Holeman and I both share the philosophy that if a former student, regardless of age, needs something that we are capable of assisting with, then we will. Because we believe in the wellness of our students in the grand scheme of life, not just the four years they spend with us in the confines of the school building. I spoke to the social worker at the MS Center where I am a patient, and I did some further research as well. Then, I reached out to Brett, who I had not spoken to since I retired, explaining the situation to him and sharing with him the research I had already done. I simply asked him if he could add to the list. He responded, immediately feeling the pang of sadness for this student, who we both adored. He told me he would check with a few other contacts he had and he would get back to me the following day. Which he did. Even though he didn’t have to. Especially since (unbeknownst to me), some egregious accusations had been launched against him, and he had been placed on administrative leave, pending investigation.
It was at that time that we reconnected in person. I can’t begin to express the depth of my complete and utter shock at the things that were being said about this man, whose only motive has ever been (or will ever be) the complete wellness of the population he serves: his students.
While my challenges are medical in nature, we both understand that these obstacles make us stronger, and we do not back down from them. Instead of explosive anger, he has used that emotion to push him forward in a positive direction with fitness and the art of natural physique body building. As with our like-mindedness relating to our students, we are also alike in this situation.  Although you won’t find me entering any fitness competitions, I use exercise, specifically yoga, as a positive outlet for my frustrations. He has persevered months of listening to his name and reputation being slandered, based on unsubstantiated hearsay while keeping his integrity in tact.
What I know for sure is that Dr. Brett Holeman is the best school psychologist you’ll ever find, and he has also been voted one of NJ’s top docs for kids. He is honest to a fault, and the only thing he has ever been guilty of is advocating too hard for a student in dire circumstances. What parent or guardian would be opposed to that?
I believe that the universe brought us together again at the exact moment when it did because I have been able to support him on this rocky part of his journey, while he supported me during the rocky road of breast cancer. Both of us have lost friends, or people who we considered friends, just because we were both faced with ginormous obstacles to overcome. It is at times of great adversity that people show their true colors, and we build up our strength (both physical and mental) to overcome the challenges placed before us. The two of us accept the fact that we are allowed to be afraid of the uncertainty before us, but we continue to forge ahead because we have faith that things are going to work out the way they are meant to.
 Ultimately, we are still working together as a team, and all of the former students that we are in contact with are still learning from us. No matter how old or young they are, they see us both persevering, and not ever considering giving up. The fact of the matter is that education extends far beyond the classroom and it doesn’t end at high school graduation.

For me and Brett, our lives have run oddly parallel to each other if you look at the big picture, and I could not be more grateful for his friendship or more proud of his perseverance. Just like our students, I’m still learning from him every single day.

Life does not always follow the plan you might have dreamed about, but our happiness depends on how we choose to address the difficult times. Thank you, Brett, for helping me remember this during my own trying times just by watching you. Your strength (not your muscles… although they aren’t bad either ?) is an inspiration to me and I am lucky to call you one of my very best friends.
Fight on, brother. The truth will come out and I’ll be right there celebrating with you when it does. #TeamBrett

I made this sign to hold up at one of Brett’s recent fitness competitions. It was worth making despite the blue and gold glitter that I will be finding in the oddest of places until the day I move out of this house!

Ocrevus

2 Replies
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.

Marty’s Place

5 Replies
Last week, I finally began my new adventure in volunteering. It’s a very special place, and I began researching it back in December when I saw the writing on the wall where I was volunteering at that time. I had been volunteering at the MS Center where I am a patient, at the request of the medical director, who just happens to be my neurologist. For two years, I happily drove the 23 miles each way every week, to make things even a tiny bit easier for those who have cared for me for so long. As much as I would have liked to increase my hours, I knew that I was not physically able to do so. When they finally hired a full time certified medical assistant, I saw that I no longer was needed, although I would have been happy to continue on as needed to cover vacations and sick days. Unfortunately no one ever bothered to have a conversation with me about my position, and instead I continued to show up. One day, upon arriving, I was told I was not needed and I should go home. I was irritated on so many levels that I began my search for a new volunteer gig. You see, since I am no longer working, I feel that it is my responsibility to do good for others. It keeps me productive and useful, and it feeds my soul.
So on the day I was sent home, I decided I would seek “work” elsewhere. I mean when someone is willing to work (and work hard!) for free, and instead of appreciation you are given the brush-off, it kind of sours the experience. So then I found Marty’s Place, which is a sanctuary for elderly dogs, who in their golden years find themselves without their human, perhaps because they died or entered a long term care facility where their four-legged friends could not be with them. I downloaded the application, super stoked at the possibilities…. but then breast cancer happened so everything in my life took a place on the back burner.

Morgan. She is such a little diva.

Fast forward to last week when I finally started my new “job”, after completing the orientation a few weeks prior. Let me just tell you that there could be no better fit for me to volunteer my services. Think of an assisted living facility, but for dogs. It’s bright and clean, and each dog is loved and cared for according to his or her own needs. They even do aqua-therapy with some of the dogs in order to ease medical conditions that benefit from this kind of activity. This is not a shelter, it is a home. My job is to hang out with the “residents”, playing, belly-rubbing, loving, hugging, walking, and feeding them. At one point, as I was on the floor snuggling with three different dogs, I looked around and was overwhelmed by the goodness in it all. I told the other volunteer (as this place relies heavily on volunteers and there are two volunteers for every shift) that I couldn’t think of a better way to spend a day. I was surrounded by love and gratitude. I found myself smiling uncontrollably, despite the rainy walks and my water-logged sneakers, and I smiled like that the entire car ride home.

Wendy. Love her.

If you are a regular reader of the blog, you know that I am a firm believer in the universe and that things happen just as they are supposed to. I believe that I was meant not to volunteer my time at a medical office, scanning papers, answering phones, and talking to other MS patients, but that my compassion could be put to better use taking care of truly helpless beings who only want to love and be loved. The kicker is the name: Marty’s Place. Having my own little Marty made me even more aware of the universal connection.

Kozmo

As much as I’d love to be able to put in more time than a few hours every week, I do know my physical limitations, so I know that I am doing as much as I can manage. Plus I’m pretty sure I have enough love to give these dogs to sustain them until the next week when I return. These animals are never nasty or demanding, they don’t get frustrated when things don’t go their way, and they greet everybody with a tail wag. I’d choose to spend most days with dogs over people anyway, and I won’t make any excuses about it. I have a sign in my house that says “Dogs Welcome, People Tolerated”, and a T-shirt (in three different colors) that says “Dogs (because people suck)”. Need I go on?

Teaker

Cali

Diagnosiversary

Leave a reply

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.