Monthly Archives: May 2017
New Beginnings
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.
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!
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.
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.
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.
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.
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.
Clinical Trials
Today I am sharing an updated version of a previous blog post because I couldn’t let Clinical Trials Awareness Week go by without acknowledging the many, many patients who put their health and welfare on the line each and every day as human guinea pigs, in order to broaden the spectrum of treatment options for patients suffering from a myriad of conditions. I am a week late, but without further ado, I present my own experience as a clinical trial participant.
___________________________________________________________________________________________________
In honor of Clinical Trials Awareness Week (May 1-7, 2017), I decided to share my experience as a participant in the clinical trial for what was once FTY720, then Fingolimod, and ultimately became Gilenya, the first oral medication for relapsing forms of Multiple Sclerosis.
The months leading up to my search for alternate treatment options were some of the darkest of my life. I had exhausted all of the available approved medications (at that time only four different injectables options). After I had failed on a once a month infusion therapy, which to me was nothing more than hanging out with my friends once a month, except we all had IVs in our arms, I began my last remaining option: a daily injection, which ruled my world. I had horrible injection site reactions, regardless of how diligently I rotated my injection sites. I tried a heating pad, I tried ice, I tried morning, I tried night, I tried just after a shower. I tried everything to make things better, but to no avail. The worst part about the MS treatments is that they don’t offer any “relief”, and taking them is a really all about the future. They are the best chance we have of slowing the progression of an inevitably progressive illness, but there is no instant gratification, and the results will never truly be known. In any case, I knew I wanted to be on treatment, but I did not feel that I could withstand the torture of the burning lumps, bruises, and excruciating after-effects of my current medication.
With no other treatment options available to me, I dove into the world of clinical trials. Coincidentally, I had seen a segment on the news regarding the Novartis Freedoms II trial testing the efficacy and safety of an oral medication, and I learned that the trial was recruiting participants. I found an online screener, completed it, and was directed to a study center that was participating. After the online screener, I received a generic “thank you for your interest” email, advising me that if my preliminary responses indicated I was eligible, a study nurse would contact me. I felt deflated, again yearning for instant gratification yet not getting it. But several days later, I received a phone call from the nurse, and spent about an hour discussing the course of my MS in great detail. At the end of our conversation, I was one step closer as we scheduled a face-to-face appointment to discuss the informed consent, which is a huge document outlining every single side effect that had been reported, as well as what my responsibilities would include. It was a pretty scary wad of papers that my husband and I scoured through (also enlisting the help of my dad, my sister, and my mother-in-law), and came back with a list of questions for my next appointment.
In November of 2008, I had my first of many appointments at The Gimbel MS Center at Holy Name Hospital in Teaneck, NJ. It was one of the very first ever comprehensive care centers for MS and it has a great reputation, particularly relating to research studies. I met with the study nurse who went over the informed consent, point by point with me. She patiently answered all of my questions, understanding of how scary a proposition it is to enroll in a research study where you may (or may not) be taking a medication that is brand new, with side effects and efficacy yet to be discovered. Preliminary results from early trials can be encouraging but still do not tell the entire story. But that November day in ’08, I made a decision that undoubtedly changed my life for the better. I consented to a two year, double blind, placebo controlled clinical trial. I knew that the possibility existed that I would be on no medication at all for two years, but they were testing two different drug strengths versus placebo, so I felt that my odds were pretty good. Instead of a fifty/fifty chance of getting the product, I had a two out of three chance. In my mind, I just knew that the universe would take care of me.
Being in a clinical trial requires commitment. Even before I took my first dose, I had two full days of baseline testing which included visits with a dermatologist, an ophthalmologist, pulmonary exams, MRIs, EKGs, and I even had to wear a 24 hour Holter Monitor (which I told my students was recording everything going on in the classroom…and they believed it!). Additionally, I had to meet with the researching neurologist, the examining neurologist, and I underwent a battery of neurological tests (which I’m convinced are all meant as torture devices) with the study nurse. And this process was repeated every 3 months. As much as scheduling was often difficult because I was still working, being monitored so closely made me feel safe even in previously uncharted territory in the world of MS treatments.
It didn’t take long before I was convinced that I was on the product and not a placebo. I am very sensitive to medications, and I am known to experience side effects, even those deemed “rare” for most patients. This was no exception! In fact, there were times that I was forced to take a “study drug holiday” until things normalized in my system. I was doubtful that my elevated liver enzymes, or the variation of my absolute lymphocyte count could be attributed to the “placebo effect”! But I still stuck it out. I committed for a two year trial, and I knew in advance what the risks were. I could have opted out at any time, but I felt it was important to follow through. They might not have liked how my body reacted at times, but it was data that needed to be collected for the good of the MS Community.
Nothing about the clinical trial surprised me, including the fact that they did not want to use me in an extension trial. In fact, they did not even want me to complete the trial with them. At month 21, the very product I had been taking, became commercially available as Gilenya, the first ever oral medication for relapsing forms of Multiple Sclerosis. I maintain that if my numbers were ideal throughout my time in the trial, I would have been asked to complete the “exit” portion, which in essence, would have sealed my numbers into the results of the trial (and also given me “free” study meds for 3 more months!). I transitioned to the commercial product, which was fine by me, because I still got what I wanted in the end: another treatment option.
Years later, we were “unblinded”, and as it turns out, I was on Gilenya the whole time. I learned a lot through the process, and I know it taught me more about being a “professional patient” than I ever thought possible. It’s true that my motives for enrolling in the clinical trial were self-serving, but ultimately I knew that I was also doing for the greater good. I was patient number 002516, and I’m damn proud of it.
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.
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.
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…