Monthly Archives: March 2017

Countdown

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As I sit and write this entry, I have completed four weeks of radiation therapy for breast cancer with just two weeks left to go. It’s amazing that I have come this far already, because while I’m going through these daily treatments, it has seemed to last forever.  But my perspective has changed today because I’m way more than halfway there, and I can hear my trainer in my ear. She usually says things like, “you can do anything for 30 seconds!”, and in the scope of things, the two weeks that are ahead of me are equivalent to 30 seconds after everything I have been through since my biopsy on December 23. 

Has it been easy? Certainly not. But I have learned so much in this relatively short time frame. First of all, I have met so many amazingly kind people who have treated me with such love and care. They innately understand that cancer, regardless of type or stage, is a huge emotional (and physical) burden for the patient, and I feel exceptionally well cared for. 

I have been counting my treatments from day one, simply by taking a selfie, indicating which treatment I was on. Anyone who knows me knows that I’ll be photo journaling this entire experience…. because, well, that’s what I do! For the first week, I simply counted on my fingers. Then I realized that I couldn’t take a selfie while holding up both hands, so Bruce and I came up with the idea of making little signs indicating which treatment I am on. Then the most amazing thing happened. My incredibly sweet MS sister shared this on Facebook: 

All of a sudden, loved ones near and far started claiming numbers… and when I take that selfie with their number, I feel their presence, love, and support. The little signs I made for treatments six through ten were just larger sized index cards that I colored on. And it really doesn’t matter to me whether the signs made for me are simple clip art or elaborate paintings. The point is that it all came from the heart. This simple gesture has made me feel like the luckiest girl ever because I am surrounded by so many people who truly have my back. 

These are the simple signs I made by myself before everyone starting jumping in and claiming numbers!

This is just a sampling of what people did for me.

When I walked into the cancer center one day last week, the receptionist told me that she thought she was the happiest person in the world until she met me. I responded with, “what’s not to be happy about?”, and then we both agreed that life is pretty damn good.  

Everyone’s journey is different, and mine has had plenty of detours for sure, but I still wouldn’t change it. I have the best partner in the world who never waivers in his support for me, plus a whole network of friends that are more like family and family members that are more like friends who have stood by my side through it all. 

This one is especially meaningful for me because one of my MS sister’s sister, who I have never even met before, really wanted to make it. She is 15 years breast cancer free, and #15 marked my half-way point.

Now that I have already come two-thirds of the way, I can see the light at the end of what has felt like a never-ending tunnel. It’s hard to believe that when I post this entry, radiation therapy will be done within just ten (10!) days! On Friday, April 7, I will take my last treatment, and ring the symbolic gong in front of all of my favorite people. On April 10, it is my 45th birthday, and I get to start a whole new year of my life with all of this behind me even though the journey has been quite an education. I am all about starting fresh with a bit more perspective and a whole lot more gratitude. Most importantly, I can say cancer…what cancer? 

I intend the ring the shit out of this thing on April 7!

 

MS Awareness Month

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Since I couldn’t write anything more personal or more befitting of MS Awareness Month than I did last year, I am bringing you an encore of last year’s entry acknowledging MS Awareness month, which is March. I’m running out of time in March, so here it is!

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Being that March is MS Awareness Month, I would be remiss if I didn’t blog on the topic at least once this month. The Cambridge Dictionary defines “awareness” as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience”. While I feel that most people have the knowledge that MS exists, very few of those people (if any) are truly understanding about how different one’s life can be when MS tags along for the duration. 

The array of symptoms that each patient is afflicted with varies so vastly not only in the exact symptoms experienced, but also in the intensity that those symptoms carry. I do think that MS Awareness is more about understanding than anything else, because without a cure, that’s what we really need. 

For example, one person made a comment to me about the following scenario: We had a family event planned which required traveling over an hour just to get to the venue. Prior to that, of course, I had to shower, attend to this thick head of curls that always needs attention, dress in normal clothes (not PJs or workout gear), put on makeup, and then travel the hour. All of this in itself is exhausting without even counting in the event itself. The comment made to me was one of complete and utter disbelief, “So your energy is sapped because you showered and got ready and sat in the car for an hour?” Yup. That’s how it works. When I am dressed to go somewhere, of course I try and look my best, and I usually hear, “How are you feeling? Because you look fantastic.” Looks can be deceiving, and no one can see what’s wreaking havoc inside my body because of lesions (scleroses or scar tissue) on my brain and spinal cord. 

I’m going to be brutally honest here and I’m going to share some of the invisible symptoms that I endure every single day but you don’t see. Maybe if I talk about them, even if they are embarrassing, we can get to a place where awareness equals more compassion. 

First and foremost, let me just say that I am blessed with some symptoms that are considered “rare” for MS patients. I’d like to tell each and every one of you that if anyone (even a neurologist) tells you that pain is not a symptom of MS, run (unless you have MS, then just walk, hobble, or roll yourself away as quickly and safely as possible)! The reason why I mention pain first is simply because it interferes with my sleep. The pain is bone deep, and it’s a constant ache (with an excruciating spasm here and there), primarily in my lower extremities. It’s very difficult for me to find a comfortable position, and when I do, it’s only temporary. Late at night I often wander around the house from bed to couch to chair seeking comfort so I can sleep. I have tried all of the prescription (and over-the-counter) sleep aides, and pain killers of all varieties, but to no avail. In addition to the pain, I deal with what I refer to as a “cranky” bladder. This means that when I have to urinate I can’t, and I try and try until tears are streaming down my cheeks. But then again, god forbid I sneeze or laugh, then the opposite is true. There is a solution (self-cathetorization) which I am NOT open to at this point in my life. I can’t even believe I’m writing this, but people should know. This doesn’t just happen at night, but it’s worse at night, and adds to my inability to sleep.  Sleep deprivation on its own is enough to really mess with your thought processes, not even taking into account cognitive deficiencies due to MS. Imagine how you’d function sleeping only 1-2 hours at a time. Every. Single. Night. 

In addition to just feeling sleepy because of my nighttime habits, I also get to enjoy the body crippling fatigue that is so common with MS. Imagine that one minute you feel fine, and then the next minute, you can’t even  summon the energy to pick your leg up to take a step. Everything feels like it’s wrapped in lead, and you feel as though you’re just sinking in quicksand. There were many days while I was still working when all I could do was put my head on my desk and cry because I didn’t know how I’d make it to my car, or home. When you tell someone with MS how tired you are, understand that your tired (because you didn’t get a good night’s sleep) can in no way compare with MS fatigue. It is, for sure, in a category all its own.

Another fun symptom is my total lack of balance. There is a neurological test known as Romberg’s Test. I am Romberg’s positive, which sounds good but it isn’t. When a patient stands with feet together, arms by sides, and eyes closed, a Romberg’s positive patient will sway, or even stumble or fall. It’s a test that is used to detect poor balance. While I don’t walk around with my eyes closed and my feet together, I am always off-balance. I have a wide based gait as a coping mechanism, but being off-balance can be extremely debilitating. I can’t be in crowded places because I can’t maneuver a crowd with my wide gait, and when there are a lot of people around, I lose my footing. This happened one time at a funeral repast, and I stumbled very obviously. Another guest at the table (who knows of my condition) said, “Did you have a nice trip? Did you just get those feet?”, and because not enough people were listening to him, he repeated it until he was reasonably satisfied that a sufficient number of other guests heard his little “joke”. I cried all the way home. And people wonder why I like to do things low-key and at home whenever possible…

Another symptom that is considered rare is the MS itch. It’s insatiable. And because it is neurological, topical creams and antihistamines are useless.  I have scratched and scarred my skin in so many places, it’s ridiculous. Once the itch starts, it doesn’t stop, and the next thing I know, I’m raw and swollen. The worst part is how badly it burns when I get in the shower afterwards. I have one friend who also gets this itch (shoutout to Cathy!), and it seems that it usually affects the same area so that’s good, I guess. She gets it on her torso, and I always get it on my legs, feet, hands, and shoulders. With all these scars, I’ll never be a model, but they are a part of me and I consider them a badge of honor. Proof of my battle. 

Other symptoms include what I call “surface” numbness from the underside of my breasts all the way down my body, left sided weakness and loss of coordination and function, and what is jokingly referred to as “fumble fingers”. My fine motor skills are definitely lacking! I can’t color between the lines, I can’t clasp my necklaces (love my magnetic clasps!), and I can’t even tie my shoelaces (but I use Hickies laces). The “MS hug” is not the kind of hug you want to have, as it squeezes from the ribs, all the way around to the upper back, and often causes shortness of breath. 

Perhaps the worst of all the nuisance symptoms I deal with are the cognitive ones because they are by far the scariest. Most times, it’s just simple things like trying to remember the word I want to use, or even forgetting my thought in the middle of speaking. Focus and retention are big weaknesses for me, so I’ve learned to watch certain TV shows and movies with the closed-captioning on. This allows me to read and listen, a true teacher strategy. But by far, the most frightening of incidents happened to me just a handful of times, but all in the very recent past. I was driving along my very familiar route when all of a sudden I couldn’t figure out where I was. I started to panic, pulling over at my first opportunity. I cautiously looked around, hoping for something to look familiar. Nothing. Finally, I realized I have the perfect tool for this, my GPS. I turned it on and after several deep breaths, I continued on my way. Often I use it even when I know where I am going, simply for the reassurance that it offers me. 

The point is, that many MS patients look just like me. We don’t necessarily use assistive devices to help us ambulate, nor do we have neon signs over our heads pointing us out. But we are not like our “healthy” counterparts because despite what you see, every second of every minute of every day is a battle. We do look good, but we are also good actors because we have to be. It’s the life we have been given, and we accept it because we are warriors and we have to. It would be a whole lot easier if awareness really did bring about understanding and compassion from those around us. But for now, I’ll just take comfort in the fact that most folks even know what MS is! 

So the next time you see me (or someone who looks “healthy” like I do) getting out of my car in a handicap parking stall, don’t judge me for not being handicapped enough, and know that even though you can’t see it, my battle is, indeed, very real. 

Not getting the sideways glares and dirty looks from others (on the rare occasion I actually go to a store and use the handicap parking stall) might make me feel that, perhaps, awareness truly can lead to compassion. 

Kids

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As a teacher, I often found myself wondering how people outside of education didn’t understand the bond that we teachers, particularly at the high school level, share with our students. I always felt the need to defend my “kids”, even when I didn’t necessarily agree with their behaviors or their choices. They are teenagers, after all, and if I was annoyed with something they did, I was always able to separate that from the person inside. My philosophy on education includes viewing the entire person, not just the data that the student represents. 

Now here I am, officially retired almost three full years, and I’m still being questioned as to why I would still maintain relationships with my now adult students. So in an effort for those who do not understand, this week I seek to explain what makes these bonds between us so strong. 

If you wonder how it happens, you probably have a visual of teachers when you were growing up: unapproachable, stand-offish, and only willing to do the minimum amount of work necessary to bring home the piss-poor salary they earned for a day’s work. When I was in school, I don’t recall ever having stayed after school with a teacher, nor were there parent teacher conferences or phone calls home to parents to discuss anything that happened in the classroom or otherwise. 

The reality, however, is that in this day and age, students often feel more comfortable approaching their teachers as a source of comfort and encouragement than anyone else. My classroom door was always open for these students, both before and after school, and often times during my lunchtime (a whopping 28 minutes), too. There is something very special between a student and teacher, that develops each year as they move one step closer to graduation. Even when they were no longer my students, I would see them every single day, and our relationships evolved.  Watching them graduate was often-times as prideful a moment for me as it was for their parents, and as college students,  military personnel, or members of the workforce I don’t feel it’s strange that many of them are still so closely in contact with me. 

When called into question recently by someone who has never worked in a school environment, I felt myself getting defensive. It’s not like I’m a predator who has sought out these “kids”, who by the way are mostly in their 20’s, and even approaching their 30’s. Our relationships have evolved into something completely different than student/teacher and although many will always consider me “Mama Rankin”, others were able to transition more easily to the friendship side of things. Their parents are aware of it, appreciate it, and even encourage it. Hell, their parents have even become my friends in many cases (shout out to them for raising awesome kids that I adore! You know who you are!).

The reason I chose to write about this particular topic this week is because I have been overwhelmed (in a really good way) by the outpouring of love and support I have been getting from my kids and their families as I fight my battle with breast cancer. In fact,  they have been way more attentive than some people who I have called friends for many, many years. As always, I have been deriving strength from them as I continue the “lead by example” model I always tried to set for them in the classroom, but now they get to see it in a real world setting. The best lessons learned in life do not happen within the confines of a school classroom.  

Last week I was lucky enough that three of my kids (ranging in age) reached out to me because they wanted to get together. That is, for sure, a very happy week for me! It gives me great joy to still bear witness to their accomplishments, no matter how small they may seem.  Additionally, I have gotten many text messages from former students, near and far, which have served multiple purposes. For one, I am reminded of why I became a teacher in the first place because this is the true reward of teaching. And secondly, they give me strength and energize me so that I can continue forward on this journey, with a smile on my face and a bounce in my step. 

As a woman who never gave  birth to any children of my own, I feel incredibly lucky. When I first became a teacher, I never anticipated that I would be surrounded by so many young people who feel more like my family than some of my actual family does! In my eyes, it’s just one more way the universe has taken care of me because they are another piece of the puzzle that makes me who I am, and a more complete version of myself than I am without them. I will defend these relationships for as long as I have to because they are way too important to me to let go by the wayside, especially during trying times. I’m sure if you looked at your “cheering section”, it would be comprised of people from all areas of your life…including your work. As a teacher, I spent more hours with my students than with anyone else, including my co-workers, and sometimes even my poor husband. Naturally, my kids make up a large part of my cheering section, and I wouldn’t have it any other way. After all, some of them are my biggest fans! And the feeling is quite mutual…

Positivity

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The above conversation happened between me and one of my “kids” the other night. She was a little anxious because she has to have her wisdom teeth taken out. My response to her was nothing forced and it reflects exactly who I am and how I live my life. 

When I think about what a different person I could be if not for maintaining the perspective that I do, it blows my mind. Yes, I have Multiple Sclerosis. Yes, MS forced me to leave my beloved career as a teacher long before I was ready. But others have MS that is far more debilitating than mine is. Yes, I have breast cancer. But others have far more aggressive cancer than mine. I know that the universe has reasons for having me travel this particular road, and I’m starting to see some of them. 

When I was first diagnosed with breast cancer, I wrote about how the reasons would become clear as I continue on the journey, just as they have (and continue to do so) on my journey with MS these last 14 years. 

When that last text came from my girl, I read it over and over again. First of all, it’s a huge compliment, especially coming from a 20 year-old. But most importantly, she was able to put into words exactly what I believe part of my purpose to be. We all know people who are all doom and gloom. I can’t tolerate that sort of person, and in fact, I surround myself with those who are more like I am. That’s not to say that there isn’t room for an occasional pity party, because we all need that release at times.  But if not short-lived then it’s way too easy to get stuck in a dark and scary place. 

It’s not like I sat there and thought carefully before crafting my response to her. It’s just who I am. I can’t imagine living my life looking through a filter of negativity. How do you then feel joy? Do you laugh? Do you smile? Does your heart feel love? Do you appreciate the precious moments that are present every single day? These are all such vital pieces of who I am and I wonder if people who don’t carry the same perspective as I do ever truly feel those parts of being human at all, much less with the same genuine intensity as I do. 

I have always been a mostly optimistic person by nature, and I find it so interesting that even as I’ve gotten older and have had more obstacles to tackle along the way, my positivity keeps growing when it could just as easily have taken a turn in the other direction.  While at one time the obstacles I face might have seemed insurmountable, I understand that every challenge makes me stronger, and when I am stronger, it’s only natural to have a more positive attitude, and the cycle continues…

I’m not sure if I was born this way, if I became this way, or if I chose to be this way. I do know that if it was a choice, it was not a conscious one, and was rooted in straight-up refusal to be a miserable human being. Even though they say that “misery loves company”, I have found the exact opposite to be true.