Life with a hint of Lysol

I prefer to think of myself more as a Kate Spade Live Colorfully kind of girl or perhaps even a touch of Chanel No. 5, but alas the scent that lingers is a hint of Lysol. I only say this slightly in jest, because it really does stay with you. The conditions of returning to work came with an emphasis on avoiding germs, especially in the height of the worst flu epidemics in years. Whatever strain is out there is claiming lives across the country and I am unfortunately at a greater risk for being susceptible to it thanks to my weakened immune system. But there is no way to avoid flu season, not anymore. According to JacquelineHoward, a correspondent for CNN, the CDCreported that while this flu season is similar to that of the Swine Flu craze which occurred in both 2009 and 2014. The primary difference is that forty nine states (excluding Hawaii) have reported spikes in confirmed cases of the flu at the exact same time. The hope is that peak season is upon us but in reality the flue has the potential to last from October to May. So no chance on avoiding people for that long. While this is should be a concern for people in general I have to take precautions a little more seriously than vigilant hand washing. Enter Lysol.

My classroom is like every other teachers’ or at least every teacher who hates blank wall space and a drab color scheme. I spend a good chunk of time in that room, so it needs to be inviting for both me and the students. It’s littered with inspirational messages, fluorescent accents, maps, bumper stickers, informative posters, post cards from historical places, and even historical finger puppets. I promise there is no official puppet show time. I like to think my classroom always had an odor of knowledge if that’s a thing, thanks to the old and new book smell that lingered in the air. Well not this year. If you were to walk in my room right now it would smell like Lysol. The air purifiers with UV may even tone it down some, but the hint of it is always there. I come in early and turn on the purifiers, which really do make the air quality so much better. One even hooks to my phone, so I can regulate with bluetooth. Technology has really come a long way. I should thank my STEM teacher friends more. The children hand sanitize upon entry and at the end of every day I Lysol the space. If I leave my classroom I wear gloves and a mask in some areas. I like to think I’m getting back to my real life with a hint of Lysol as a reminder of where I’ve been (not that I need one). This is my first step toward normal. I still cannot frequent other public spaces without donning a mask and gloves until the year mark in April. It’s something of a slow start. And I’m happy for it.

I actually told my high school students that it felt like I wasn’t working because I was just so excited to have conversations with people aside from my immediate family and a golden retriever who so rarely replies. They may not feel that way considering I assign them homework and make them do ‘teacher fun’ activities. But for week one they seemed happy to have me back and more than considerate to follow the safety precautions. And maybe someday I’ll market a ‘hint of Lysol’ as a fresh clean smelling parfume.

Coward

“We know the dirty secret: You don’t battle cancer. You don’t fight it. If cancer wants you, it walks into your room at night and just takes you. It doesn’t give a damn how tough you are. The only way you survive is through a mix of science, early detection, health insurance and luck. Courage has nothing to do with it.”

Josh Friedman :It’s O.K. to be a coward about cancer, Time Magazine August 7, 2017

I read this article article several months ago and dog eared it, then ripped from the spine, and more recently scribbled notes on it. I needed to mull it over, process what Josh Friedman, the screenwriter, was actually saying. He is a self proclaimed coward, one who felt utterly betrayed by his body. And to me that makes perfect sense. I too am a coward who felt betrayed by her own body. I was afraid that death would come from me like a scene out of the Deathly Hallows in Harry Potter. (We just watched all seven movies these past few weekends, hence the reference.) It had come for so many before me without any consideration for the incredible human it may have captured. At no point did I wrap my wrists and put on pink boxing gloves and think I will strike back hard and death will retreat. That’s just not a thing. People tell me all of the time how brave I am or how strong, but in all sincerity I got lucky. I say that with certainty because one of the strongest and bravest people I had ever known didn’t make it. And for that I agree with Josh Friedman ” Because when we glorify strength without showing empathy for weakness, we end up with a toxic version of heroism, one that links bravery to goodness and cowardice to getting what you deserve.” No one deserves cancer and the people who don’t survive it are no less brave than those who do.

The ‘battlefield’ of cancer is difficult to navigate. There is no right way to deal for the patient, their loved ones, caregivers, friends, colleagues, etc. and yet it feels like their should be. Like maybe someone needs to write a What to expect when your expecting cancer handbook. One that outlines how each party should respond. What to do or not to do. What to say or not to say. I don’t have those answers. Even in the aftermath, I have absolutely no idea. What I know is that it’s never over. Cancer will forever be part of the life you have. And it may manifest as scanxiety at yearly appointments, ptsd, depression, brain fog, physical disabilities, etc. Or may be a shift in thinking, a new zeal for life. Regardless of the good or bad, it exists. The fear of dying doesn’t just one day disappear. If anything you make peace with it and pray that you have the ‘invisible cloak’ that keeps death from finding you for a very long time.

I think it’s important to say out loud that it’s okay to be a coward about cancer. It’s okay to full fledge panic when you hear those words applied to you. It’s okay that the experience sticks with you. No one else has to understand it. You hope others empathize, but sometimes it’s inconceivable unless it’s happening to you. I think the true test of courage is in your resiliency. Can you face crushing disappointment time and again and still find a way to keep pushing forward? Were you able to be thankful for the life you had even when the future seemed improbable? Those aren’t easy things and I commend anyone whether they have ever had a life threatening illness or not who is able to do that.

I guess I needed to mull over this article to acknowledge that no part of this experience has been without cost. And no part has been without fear. And even so, every single time I hear the lyrics:

This is my fight song
Take back my life song
Prove I’m alright song

I want to shout them at the top of my lungs. (Maybe I would have said sing if I wasn’t tone deaf, but I can’t really be sure about that.) But I think it’s important to note that I am no braver or stronger than anyone else. I did what I had to do and thankfully it has worked thus far. I had my nine month scan, with minimal scanxiety attached, and had no evidence of disease or lymphoma progression. I got my first set of vaccines and was cleared to return to work with the understanding that I had to remain vigilant about keeping a distance from sick people and maintaining a healthy lifestyle. More on how I accomplish that in the future. I know that I am grateful for my resiliency but I am equally grateful for having an opportunity to grow emotionally and spiritually as a result. I can ask for help, something I struggled with in the past. I can tell people no, because I no longer need to please. I can relax. I can love fiercely. I can be a better friend.

So it’s okay to be a coward, it’s okay to fight, it’s okay to be numb, it’s okay to feel too much. It’s up to you. Cancer doesn’t decide.

Hesitant

I think I have been waiting for something profound to write about or say and I keep coming up empty handed, so to speak. I feel like after all of this, I should have some sage advice to offer, to myself mostly, or at the very least have a wise phrase that others may jot down in their journals – because everyone does that, right? But nope, I have not a thing. However, I did come across a quote, that I quickly jotted in my journal, that resonated with me ; “The things that is really hard and really amazing, is giving up on being perfect and beginning the work of becoming yourself”.

And I have come to realize that just being, for the majority of people, is work. In the words of one of my former students, “the struggle is real”. I’m six months out from my transplant. No gvh or signs of a struggle between my cells and my donor cells. And I just received the official word on my latest test results – 100% chimerism (meaning my immune system continues to be 100% of my donors) and 99% T-Cells (which are responsible for fighting off rogue cells, like Reed Sternberg cells that earmark Hodgkins). So those results are awesome, as were my 28% increase in lung function since March. I’m relieved to say the least, and have to admit that I was hesitant leading up to these six month benchmarks. I was hesitant to believe that they would be well…good. I interpreted every itch as the dreaded Hodgkin’s itch (by the way intense itching is not normal and is often the first sign of an underlying problem), and every abnormal sensation an angry lymph node waiting to implode my new sense of well being. And I’m not an anxious person, thank god. I can’t even imagine how many times a day I would need to utilize the deep breathing app on my Fitbit if I were. And still I’m hesitant to believe that transplant might have been the answer. I’m left with 70% doubt, since 30% success is what the data shows. And I am fully aware that no statistic has ever been accurate in my case, but the numbers play tricks with my mind. I guess no different than Calculus, I had serious doubts of passing that too. Most of the time I can look past the hesitation, but it creeps up in the oddest ways. So I have to work on it even though it hasn’t stopped me from doing anything, that’s for sure.

I’m full steam ahead planning for our wedding two years from now. And admittedly, prior to transplant, I dreamt about marrying Josh but was never quite sure we’d get there. It’s hard to future plan, when you are confronted with the possibility death. I know Tim McGraw makes it sound almost exciting in his song – “I hope you get the chance to live like you were dying”, but it isn’t and all I can say to that is F-you Tim McGraw. Now don’t get me wrong, this experience has changed my perspective and my life in a positive way, but still… Anyhow, future planning is in full swing. I already committed to a photographer, a caterer and a dj. So much for my commitment phobic nature that apparently disappeared after my lengthly relationship with Josh, Dr. Z, and Hodge. I’m having fun with the wedding planning and getting back into shape for it. I like to call it sweating for the wedding, Josh does not – especially when I make him get up early on the weekends to hit up the bike trail. But he humors me anyway. I’m more or less committed to treating my new stem cells better than my last ones, so as a result I have developed an intense relationship with Blaze (my fitbit). We count our steps, flights of stairs, and punches thrown (boxing dvd) all while enjoying Fabletics, Jax walks, and the outdoors. I genuinely feel great!! And I can’t be more thankful for it. So I guess my words of wisdom, that I won’t hesitate to tell you are “always be grateful, thankful and know that you are blessed”. And for more gems like this keep reading (National Novel Writing Month is November and I just might be working on something big). And in the meantime, I’ll keep doing the hard work of becoming myself.

 

In my first day of school clothes…

F. Scott Fitzgerald said “Life starts all over again when it gets crisp in the fall” and I couldn’t agree with him more. I have always loved September. The excitement of going back to school, new school clothes, notebooks, pens and pencils and especially my shiny new planner. My planners have completely evolved over the years from academic planners in high school and college only needed to record due dates for major assignments to my teacher planner that basically contains notes from my career in the form of handouts, sketchnotes, to do lists, records, etc. I look forward to the day my cell phone planner tracker says that my package will arrive. And I’m even more excited when I see my amazing mail carrier deliver the pretty Erin Condren box, you can’t miss it. There is nothing better than opening it to find inspiring messages and stickers before you get to your shiny new personalized planner. Yes, I am aware that I carry a dork torch and I’m proud. There are others of my tribe, my colleagues, that know exactly what I’m talking about. I received my planner at the beginning of July so I could begin making it my own for the 2017-2018 school year. And here I am on the first day of school already making plans and lists and taking notes.

Except for one thing, I can’t go to school! So here I sit in my first day of school clothes getting ready to go in for bloodwork instead of collaborating with my team. This is actually my second missed first day, I missed school two years ago when I was prepping for my auto transplant that never happened. This time I missed my first day because of the allo transplant that did. Not only will I miss the first day, but I’ll miss the whole first semester and it is terrifying. I keep thinking about my awesome substitute and what she may need, what my students will think, if my classroom will survive the chaos of learning. I know in my heart that all will be fine, but I like being there. What I really should say is this. Hi I’m a control freak! Something you think I would have let go of considering I’m rarely in control of my life thanks to Hodge. But alas, old habits die hard.

Not being there is a learning curve for me. I’m still working just from home. I’m developing an online class for my AP students and helping with the planning for my other classes. I’m working on curriculum development and partaking in personal professional development. So at least if I can’t be there I’m still part of the process. Thus, I did some school clothes shopping and I get ready for my day as if I were going to work. The awkward videos I’m making of myself doing mini lectures and explaining assignments makes it a necessity. In many ways I’m excited for this new experience and the new start that comes with the fall and +134 days after my bone marrow transplant.

#bigweekforhashtags

We can thank Chris Messina, a social technology expert, for introducing to the hashtag in 2007 with the first ever #barcamp (a global technology unconference). Since then hashtags have become commonplace and not just for twitter users either. The hashtag is used to pinpoint specific and relevant issues for an individual or in society. As a concept it has gone viral and people are using it to identify important events, like weddings. I know I fully intend to use the #goingGmeiner so I can collect the photos from that special day and the ones leading up to it. I’m not exactly tech savvy but even I can jump on this bandwagon. There fun to create, I even use it as an activity for my high school students in our history class. Who doesn’t love a tag like #fromBunkerHilltoBrexit (the history of modern parliamentary procedure) or #GameofThronesorWarsofSuccession – I just made these up, see fun! If you struggle with developing in your own hashtags just go to one of the 664,000 generators you can find on google and voila hashtag created (#cheaters).

Regardless of how you come up with your hashtags some have more meaning than others. And this week was a big one for hashtags in my world. June 4th marked #nationalcancersurvivorsday. I used to give little thought to this prior to my diagnosis nearly three and half years ago. I knew of cancer, knew many affected by it, had lost people -important people, and yet I thought very little about it in actuality. It’s not until you hear the words applied to yourself that you are thrust into this world of cancer and designated a survivor. I’m not even entirely sure of what that means to me. Yesterday I met with the fabulous Physician’s Assistant on my transplant team who first assured me that I was doing very well (numbers within normal range for normal people not just Bone Marrow Transplant recipient people) and that she thought my positivity was contagious. I laughed by then I started thinking about what being a survivor meant to me. I felt like and feel like I have obligation to the people who weren’t able to survive it -like Mike taken by Melanoma at the age of thirty two. He was always so full of life, a constant comedian with a kind heart and smiling eyes. I have to say that I was angry at cancer for taking Mike, but when my turn came I was determined to not let the bitterness prevail. I was determined to continue living on my terms and I have. I am actually grateful for the shift in perspective and thankful for my support system made up of old friends and the new ones I’ve met along the way.

Yesterday was #nationalbestfriendday and I am lucky to have some of the bestest friends around. Some who have been there for me since grade school and others I picked up along the road of life. Speaking of roads, my friend Karen took a day off to take me to my DFCI appointment yesterday. That’s how lucky I am and the road trip conversation was the best. So despite my pseudo house arrest I manage to stay connected with my friends. Steph and I chat almost daily and Tammy and I planned a fake Starbucks date for this weekend. Just this week one of dearest friends, Kristy spent a rainy afternoon donned in a mask for six hours so we could catch up while she was home from California. She and I reminisced about our middle and high school escapades and recalled our love for all things 90210. Another one of my high school friends popped over on the same day and it felt like we are seniors all over again (#just like it was 2000).

Bringing me to yesterday’s other hashtag #classof2017, where I missed graduation for one of the first times in my thirteen year career. I was sad not to be there. There is something to be said about the closure of graduation and seeing your students off. This class was special to me because I had the honor having many of them multiple times, in fact I had a few three out of their four years of high school. They become your kids and any teacher will vouch to that. So I offered them congratulations and wished that they not do well in the world but that they also do good. I have had the opportunity to see many students go off into the world and do amazing things – working on a cure in the labs at Dana Farber, become a historical building architect, an amazing middle school teacher who genuinely cares for his students and the world in which they live, physical therapists, museum curators, writers, musicians, and world travelers to places like Germany and New Zealand. So in my case I have to say I’m #luckyinlife for so many reasons!

Making Adjustments

As I am approaching day +40 from my stem cell, one piece of advice I might offer other transplanters is to find a way to be comfortable making adjustments. I, like most people, am a creature of habit; so having my routine upended has been somewhat of an adjustment. I went from workaholic and social butterfly to homebody virtually overnight (well a 25 day hospital stay) and it is taking some adjusting. The first week or so when I cam home I found that I was frequently tired and even incorporated some napping. By the end of the second week naps were no longer needed. I found that I’m not quite ready to walk around the block just yet and can only go to the corner and back and that that needs to be enough for now. I also discovered that 2 miles on the stationary bike is easy and it makes up for the lack of walking distance. My next task is to add in some Yoga and hand weights to rebuild what I have lost from years of treatment and deconditioning. As of June 1st, I intend on making it part of my new routine.

Admittedly until now, much of what I have been doing is shamelessly binge watching Netflix and Hulu. Even as we speak Game of Thrones is on in the background (which if you haven’t invested in watching you may want to). It was a much needed break from chaotic year leading to the transplant, where I worked full time amid treatments and appointments as well as maintaining a full social calendar. No wonder why the couch seemed foreign, well that and the fact that we had to invest in a new one per transplant regulations. The last week I was starting to feel unaccomplished, which is not something I am okay with. So I decided to take some initiative and actually work on a graduate class I had been putting off and finish it. It was nice to get back into the game and made me realize that I just need to adjust my frame of mind and set new goals that are not necessarily career driven.

One of these goals is accepting my new normal for what feels like the hundredth time since being saddled with Hodge in the first place. Only this time, I like to think of it as playing for keeps. My commitment-phobe nature sometimes rears it’s head so I recognize there may be somewhat of a learning curve on this, but I am determined that extreme make over on the cellular level was not for naught. Changing my eating habits has been relatively easy, since I have to be aware of what I am eating and where it came from. Since it generally has to be made in my own kitchen it takes the guesswork out of it. Definitely an adjustment from having take out and frequenting restaurants with my girlfriends on a weekly basis. You need to be creative and try new meals or making things in a new way. For example, in order to have ‘raw’ vegetables you have to flash boil them to remove any bacteria this includes tomatoes for a sandwich or celery and onions in a macaroni salad. You also have to pack all of your meals if you go anywhere, so I have reverted to packing a lunch bag on travel days or if visiting. That is by far the biggest adjustment. That and no going to public spaces. For a time I was daydreaming about Target and was actually excited to shop in the gift shop at the hospital. I even order our groceries online through SHOPS4YOU so Josh can pick them up on his way home from work. Like I said making adjustments.

It’s all a new experience and not in a bad way just different. But that’s true of life, the one thing for certain is change. I like to think I embrace albeit begrudgingly at times. This change for me is drastic. After doing a chimerism test which tells how much of my immune system is mine and how much is my donor’s I know that I am 100% her and 91% in regard to T-cells, so the change has already occurred. And that is the first hurdle to jump in this much longer race. I joke that I was able to win the initial sprint and now I have to endure the marathon. Like most things, it is an adjustment whether it’s your pace in a race, a dress for a formal event, day to day life for nearly everyone.

The Time Is Now

I have never been a fan of a countdown clock, not that I’ve really ever had one but regardless I am not a fan. It hangs over your head like a looming deadline. And let’s face it, no one likes deadlines, even if you do work better under pressure like I do. I may not like the countdown clock because in my mind it always seems to countdown to something drastic. I remember when I was a kid one of my favorite movies was the American Rabbit (which I passed on to my goddaughter for the sake of nostalgia) and I think it had a countdown clock or at least I remember it that way when the Vulture was about to take over. (I may need to check on that.) But in movies the countdown clock is always a bad thing, it tends to be the moment when everyone holds their breath to brace themselves for the horror or when the bomb squad gets called in to save the day. I had the date April 12th circled on the calendar and everyday that it came closer the worse it seemed, like the countdown clock. I even asked Josh if we could make a break for it a couple of times and he told me it wasn’t worth the fallout…ughhh.

That meant I had to have my last day at school, which was tough. As a teacher, I have always believed that the kids that walk through your door are “your kids” and leaving them with anyone other than me was difficult. Plus I had to pack up my room completely in anticipation for adding the seventh grade to our school next year. So the walls were bare and the kids were somber, but they were also thoughtful and kind. My seniors planned a birthday/going away party and bought me a beautiful journal and wrote messages in it. I was surprised I managed to hold it together. I almost made it the whole day until one of my sophomore asked me why bad things happen to good people and I couldn’t really provide him with a good answer other than that life isn’t always fair. I also made sure to tell him that despite that fact, I wouldn’t change mine for anything. I have an incredible life, I just also have refractory Hodgkin’s Lymphoma. I hope if I have taught them anything about life it is to persevere with a positive attitude regardless of the circumstances you may be faced with. Since I left on Friday, I have received little notes and photos from them here and there which mean a lot me.

I didn’t want to give myself too much time between the transplant and stopping work, because I think living in my headspace for too long wouldn’t have been beneficial. So I had the weekend and two days, much of which I spent dining out with family and friends and packing. Packing for a BMT (Bone Marrow/Stem Cell Transplant) is hard. All clothes, blankets, etc. need to be freshly laundered and placed in plastic bags. I of course had to do mine by outfit fully equipped with pants, a tank top, shirt, and matching headscarf because when you look good you feel better. Either that or I believe myself to be Coco Chanel. I also needed to pack for 30 days in isolation, that means I needed books, activities, coloring, technology, etc. It all amounted to seven bags stuffed full and a box. Josh was hoping for a bell hop at the hospital, but he was disappointed.

Once the packing was done, I also needed to do something about my hair. I had been informed that it would fall out from the treatment. There is nothing worse than losing your hair in pieces and waking up with it in your mouth. I do that now with golden retriever fur….yuck! So I decided to take matters into my own hands and shave it first. I’m not super emotional about my hair, after all Steph shaved it into a multicolored mohawk the first time. So this time Josh did it and we went with funny. Things I’ve learned about this process, if you can’t laugh you’ll cry.  So we went with funny. I think I pull off a mustache quite well, just not as good as Josh!

I was ready to go after that I guess, kind of, sort of. I am fortunate to have so many people in my life that make it hard to leave. For example, my soon to be sister in law arranged daily fun activity bags to be opened once I have my transplant. Similarly Steph, knowing how much I love cards and stationary, arranged Kards for Krista at school and handed me a box of hand written notes for inspiration and encouragement. There are so many people who make up my amazing support system and luckily I was able to see most of them before I left. The day before I left I managed to sneak in a Home Depot run with my dad, lunch with my mom, ball with Jax, talk time with Nancy (my second mom) and Steph and Bryan, and couch time with Josh. I knew I couldn’t run because they were all the reasons why I was doing this. I am young and healthy enough to endure the process and if I waited that may not be the case. So the Time is Now and I’m as ready as I’ll ever be.