Something to Say..

I always have something to say or at least that’s what my fiancee said to me this morning before he left for the office. His actual words were ” I need to stop off at the hardware store after work” and when I asked why, he replied “to pick up some bolts to shut that trap of yours”. I thought that was pretty clever. But all joking aside, he was telling the truth. My parents would certainly be in agreement. And they would be right, I generally always have something to say about everything. Now that you know that, I’ve decided to keep my blog going and instead of it primarily being pretty witty and…cancerous, it will be pretty witty and whatever else I may fancy at the time. Don’t misunderstand, I’ll still update on my cancerous situation and I am writing a book about my experience, thanks to all of your encouragement but I’m realizing more and more that it’s only a piece of my story.  I’d like to think I have more to say.

Since my transplant, I have become a morning hiker, an afternoon couch potato, and an evening contemplator. All of which I imagine sound riveting and contradictory, I’m sure. I started walking daily a few months ago in hopes of rebuilding strength lost from the last four years of chemical cocktails, radiation waves, and intruder cells. I started off walking around the block, which I was excited about because a year ago I would have needed Jax to pull me the three quarters of a mile. (Now I only use him to drag me up hills.) It didn’t take long for a mile to turn into two and even three on most days. I’ve convinced my dad to join me and Josh on weekends. It turns out I enjoy it and am having a great time exploring. Except just one side note, make sure you have the right gear to explore. Like make sure your pup has a fluorescent pinnie or bandanna so nearby hunters won’t think he’s a deer. Bundle up when it drops below 30, but not so much that you limit your range of motion. (Reasons why the Pillsbury dough boy probably wasn’t training for a marathon.) So in my afternoon couch potato mode I was able to consumer report review what to wear and landed on cold gear and a tri-climate jacket. Making those purchases means serious business. Yay for new hobbies and investing in me.

That brings me to my other crazy lately. I am all about setting and achieving goals and planning. I have so many planners to prove it; one for teaching, one for my wedding, one for life. And I love it, possibly because I love paper and stickers and highlighters and binder clips. Like I’ve mentioned before, I’m an office supply junkie who likes personalized pretty stationary. Clearly things that matter to all adults. Isn’t it adult to have stationary with your name on it. I also spend my mornings updating a to do list that I push through in the am so I can couch potato in the afternoon. My couch time is all over the place. I have watched series after series since my hospital stay to just watch (Girls), to stop living under a rock (The Sopranos and Game of Thrones), for the sake of nostalgia (Party of Five). It’s been interesting and somewhat thought provoking. There is a lot of really great tv and just as much mediocre tv and some downright bad tv.  But for now, I get to enjoy my couch potato time and plan to Hallmark Christmas movie every chance I get. It used to be a snow day treat, so I fully intend to take advantage.

And my evening contemplations are lists of all things I want to do, intend to do, hope to do and do. Most of the time we race to get through the day and don’t reflect on what we actually did. I laugh because we so often say sorry to people when we don’t get in touch and explain it away by saying “life got in the way.” I think we should apologize to ourselves for thinking life got in the way instead of being present or making plans to enjoy it even more. So that’s what I have to say today!

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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.

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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.

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The Shift

Our American culture is fast paced and somewhat chaotic by nature. Maybe that’s the result of how we came to be Americans, fighting for our liberty from the colonial bondage instituted by Britain. So maybe our history has kept us in a perpetual fight or flight mode. Really think about it. Have you ever been to New York City where it feels like everyone is rushing toward something or on a rural backroad that virtually goes nowhere and still there is this one car that is practically on your bumper. I feel like at this stage in the game we are the country equivalent of an angsty teenager and maybe we are just that, after all our history as a nation is relatively new comparatively. Nations, like people, must undergo shifts to illicit change. After recent events, it is clear that we are in dire need of a major cultural shift. One that identifies the issues affecting us in the now; one that acknowledges that there is much work to be done. Of course that’s never easy, it requires introspection and no one likes to answer the tough questions about themselves.

In light of recent events, I was inspired to watch the documentary The Story of Diana because I needed to see an example of light. She was a truly beautiful soul who used her public fame to raise awareness for those who had no voice. She shifted the world view in a humanitarian effort to spark real change. I can’t say that I would have had the courage to walk through a mine field, even with the plastic face guard and padding; but I would like to think I’d at least get suited up. I feel like as individuals there a number of times in life when we face a ‘precipice’ that requires us to make a shift in thinking, perspective, attitude, priority, something. Think about it, in our younger years that may be finding a new table to sit at in the cafeteria, as young adults knowing when it’s time to get out of a bad relationship even though we still love the other person, or in full fledged adult mode acknowledging that maybe our first career choice wasn’t the right one. Whatever the situation is, it requires some pretty serious thinking.

For me right now, my precipice or cliff moment is figuring out who I am in the wake of my transplant. Some things I know for sure are that I am fortunate and I am loved. Everything after that seems inconsequential really but still a part of the big picture. Until the age of twenty two, I was consumed by my academic studies. I had to do well, not because anyone demanded it of me but because I demanded it of myself. Until my Hodgkin’s, I was consumed by my career. And since the day of my diagnosis, I’ve been consumed by the threat of my cancer even if it didn’t appear that way. I’m not saying that it’s all I thought about or tended to, but it has always been a force to contend with. It completely changed the life I thought I would have, for better or worse. I met Josh again and fell in love, which I might have shrugged off prior because I was too busy with my job and instead I get to be busy planning my wedding (which I already have a giant Tupperware container marked wedding stuff for two years from now). I made peace with the fact that there is a very slight chance that I will ever have children of my own, which was initially devastating. Instead we will continue to have furbabies and spoil the other children in our lives. I also never thought I could sport a Natalie Portman pixie or be without Target for 127 days, thank God for Amazon.  Cancer changes things and anyone who says otherwise has never had cancer or been close to someone with it. But you adjust, it just takes a shift in thinking.

Now that I’ve had a bone marrow transplant, the threat of my cancer is still there but it’s more like a distant storm that only rumbles when I have an appointment or when the ‘Nervous Nellies’ in my life I get nervous if I do anything without a hazmat suit even if it is outdoors. Sort of like a reminder that it could rain at anytime, but I won’t melt if it does. So I’m left with this new normal that requires another shift. I need to find a healthy balance in general, my own personal zen. I haven’t quite gotten it down yet, but I think I’m getting there. For now I get to focus on me, planning my wedding, working from home until January in some capacity, writing, reading, playing with Jax, socializing from my patio and various porches, exercising, asking the tough questions, accepting the shifts, and loving the life I have.

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Summer of Porches

I’ve been on hiatus, enjoying my summer of porches. I’ve always sort of fantasized about sitting in an oversized rocker on a wide front porch with large white columns in the foreground, sipping mint juleps. I may even go so far as to envision myself wearing a southern dress and floppy sun hat. What, am I the only one who has a romanticized Gone with the Wind view of the porch? My summer of porches slightly pales in comparison of this grandiose view, but the action is far better.

I lucked out because my transplant was timed perfectly to enjoy the majestic views of the mountain and summer weather of the Berkshires (minus the rainy days and odd forty degree mornings). So the two out of seven days are phenomenal. All joking aside having my transplant in the spring allows me the opportunity to be out in the world or at least on a few porches to be exact, otherwise I would be trapped inside. I have frequented a number of fabulous porches and a makeshift patio of sorts (mine). I spend my days under the canopy photographing my birds, reading books for pleasure and work, making my way through my magazine subscriptions of which I have more than I should admit to, and visiting with friends. Just last weekend my friend Tristanne and I set up shop out there to work on wedding plans, which is both fun and completely overwhelming. Thank god I have two years to plan appropriately. I have to admit I may be a Pintrest addict who has forty wedding dresses pinned to their board and an equal number of ideas that may or may not suit our venue. By the time my planning period is over, I will definitely need an intervention of sorts. Regardless I will enjoy another month (hopefully more) of hanging out on my patio.

I also frequented a fabulous multi level porch at my friend Karen’s where we have party on the porch once (sometimes) more during the summer and fall. It has been a tradition for a number of years now and I’m glad that despite my inability to really be out in the world, I can still do things like this. I was excited to take the long way and walk up the outside steps to the second tiered deck, lined with a fun potted garden and hanging bird feeders that have frequent visitors. That wasn’t even the best part, the best part was hearing Donna’s booming voice and air hugs from everyone, except Karen who shares my hugging philosophy. I’m lucky to have these amazing women in my life, who are my coworkers and friends. I talk to Karen everyday, which makes planning party on the porches even more fun. And on those porch days we laugh uncontrollably (especially when trying to get a group selfie), eat well, and share our latest adventures. It was nice to be with my people, especially since I will miss the next six months of breakfasts and lunches while they are back at work and I am still at home.

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I also had the opportunity to frequent a new porch. Steph and her husband just redid their front porch in a beautiful reddish stain with black flooring and spindles. They really did a great job, adding lattice work and solar accents. They also have fabulous wooden rockers where you can relax and chat. I haven’t had a ton of time to spend at their still new to me home, no like their old one that used to have a back deck. I was sad that I would have to miss our annual trip to lake where much of the time is spent on the camper patio doing crosswords, playing board games, and eating Ruffle chips and French onion dips. It was actually one of the things I was most disappointed about having to skip. It’s our time to catch up without work, to read young adult fiction simultaneously like we have our own secret book club, and just really catch up.  So now we have to do that from the comfort of our porches/patios.

Friday marked my day 100, which is a really big deal in the transplant world. It means that I made it through the first three months unscathed, no acute gvh, infections, or other complications. It doesn’t mean those things can’t occur it just means that they may be less likely in some cases and or less severe in others. That doesn’t mean I’m out of the woods yet, as all of my medical team likes to remind me. Things can definitely go awry but they feel confident that I’m on the right track. I get to taper off the anti-rejection meds which might stir up some gvh but they prepare for that. My appointments are spaced out to biweekly locally and monthly in Boston. I can order take out from reputable places, which is very exciting. I love knowing that there is an option not to cook my own meals. I’m planning on waiting though till our anniversary dinner in a week and a half. Aside from that things remain the same, no public places. So I will continue to enjoy my summer of porches!

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On a break…

Everyone remembers the infamous Friends episode when Rachael accosts Ross for cheating and he adamantly shouts “We were on a break”. You probably don’t remember the specifics but that line is unforgettable, often repeated, and frequently used in parody. I used to joke about breaking up with my alarm clock at the start of every summer break. The very concept of being on break should illicit feelings of freedom. However, ever so rarely it does the opposite. For instance my current break from life doesn’t necessarily feel free. Now I’m guessing that’s because I have restrictions in place, similar to an ankle monitor without the actual hardware. And no, I’m not a flight risk nor did I jump bail but my doctor insists on my being sanctioned at home so I am isolated from the germy public. Both my soon to be father in law and my fiance are in complete agreement and insist on my not “rocking the boat”. I jest but in reality I have no intentions of breaking the rules, however that doesn’t mean that I have to like them. Consider this, I find going to the hospital gift shop exhilarating. I wish I was kidding. I actually have plans to visit it again on my next Thursday appointment; it’s scandalous, a shopping loophole (that is not Amazon). So as you can see my break from life is not exactly the break I would envision for myself. I have appointments frequently, and shouting “We are on a break!” probably won’t work.

So instead I dream of my girlboss status (even though it didn’t get picked up for a second season)  and being Alicia Florrick from The Good Wife. I even went so far as finding a padfolio to carry around when I return to work. I clearly have too much time on my hands with this break and have binged way too much Netflix. I never realized how much of my life was spent not on a break – running constantly. So I have since become an amateur photographer and ornithologist – inaccurately identifying neighborhood birds. I have also become a walker, not a street walker or a jay walker – a bike trail walker with my mom and my Golden. I intend to try painting and writing at everyone’s encouragement. I even signed up for an online writing camp, so we shall see. In the meantime I’m on a break…

#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!

Humor is necessary when battling Hodgkins Lymphoma at the ripe old age of 32