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!

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. 18620357_10211201151643491_2147142869666661607_n

Trending

I used to think the term trending was reserved for financiers analyzing stocks and other things I know nothing about. And then several years ago, trending became a social media term where something or someone is posted about frequently in a short period of time. That something might be a spider the size of a small dog in Australia or that someone is the celebrity of the week. Tv shows often end up trending and I have been watching one that was trending five years ago, what can I say I’m generally behind the times. But I shamelessly have been watching Gossip Girl….again, on my house arrest, which usually gets an eye roll from Josh and well just about anyone over the age of twenty. But I like the trends- the designer clothes and handbags and socialite parties. While I may never appear on page 6, a girl on house arrest can dream.

But for now, I have my own trends. I’m bringing back the head scarf and beanie, much needed accessories to keep my fabulously bald head warm. Paired with some long dangly earrings and it’s definitely a look. In terms of jewelry, I’m also donning my new Medic Alert bracelet. Fancy, I know. But actually, it is relative fancy and not at all what I pictured which was a flashing bracelet that had the “I’ve fallen and I can’t get up alarm on it”. Instead it is a tasteful sterling silver triple chain bracelet that identifies me as someone who requires irradiated blood, has had a bone marrow transplant, and sports a titanium mediport. In addition to these accessories, I’m also trying out brow liner. A bold move for me, but a necessity because they awkwardly fade even though they don’t totally fall out. So those are pretty much the tips I’ve picked up from Gossip Girl this week.

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In other trends, my counts are still trending up. After my two latest follow up appointments my numbers are slowly climbing. My white blood cell count is 1.7 (keeping me neutropenic and at a risk for infection, which is expected for a few more months), my reds are stable yet low (continually making me anemic, again to be expected), and surprisingly my platelet count has jumped nearly 80%. I have been told that all of this is good news and that engraftment has clearly taken place and the rest should normalize in due time. Until then I have to follow the transplant rules for my first 100 days, which is a post all of it’s own. So for now, I’ll finish watching Gossip Girl and create my dream closet on Pintrest for when I can get back to my normal life in 340 days (and yes I am counting and sort of joking). And dare I say, things for me are definitely trending up.

 

Off the Cancervation

I was able to come home after eighteen days post transplant and twenty five total days on the cancervation / hospital. My time there was well spent. I was in one of the best hospitals in the nation with round the clock care. The nurses were phenomenal and I can honestly say that I was actually sad to leave some of them, which caught me by surprise. I didn’t anticipate making friends while I was there (although I hoped), but that is exactly what happened. I was able to connect with my nurses and one of the PAs on a more personal level; we talked about life, family, wedding stuff, tv, books, podcasts, etc. I think these conversations were an integral part of my quick recovery. I went into the hospital thinking that I just had to make it through and planned on doing that with a smile, when possible. Luckily for me it was never not possible. Like Doctor J said, the universe owed me one. It turns out that a small percentage, between 5 and 10%, of people undergo this process without contracting neutropenic fever or feeling miserably ill. So for once, I was on the right side of the numbers game. Feeling well with the exception of being tired allowed me to stay positive, keep busy, and pass the time. It really did go by much faster than I anticipated. Once my ANC (Absolute Neutrophil Count) started to rise, it did so quickly and the protocol stated that two days of an ANC over 500 qualified for discharge. Sunday was my second day over 500 and Josh was able to pick me up and take me home.

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But before I could leave the cancervation, I had to undergo teaching so that I could thrive at home under my new guidelines for life after an allogenic transplant. I met with one of my favorites first, Ashley, who taught me all about well pretty much everything. It was easy for me to talk to her about anything and everything, which was the case throughout my hospital stay. She was so knowledgeable about everything, which really helped in terms of getting comfortable with going home. I didn’t want to be nervous about being out of the hospital, I figured Josh would have that covered. And thanks to Ashley and Mikaela (the fabulous PA I got to know who did my med teaching), I wasn’t nervous at all. I also met with nutrition on the day of my discharge. I wanted Josh and his parents to be there since I knew Adrienne may have questions and Josh would be most impacted by the food piece once I was home. Once the teaching was over, my chauffeur (wheelchair service) arrived and I left the pod (masked and gloved) and the cancervation for the first time in a month.

I was so excited to see the not so sunny sky and be out of my room. Josh and I talked about the rules we would need to adjust to on the way home, but mostly just how happy we were to be together no masks. I couldn’t wait to see Jax. He ran circles around me at ninety miles per hour. And once I got inside, my parents were there and even though I saw them a week ago it was nice to see them at home. We all unpacked my things and got settled back in at home. Josh took the next day off and we lounged at home.

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I am so incredibly blessed to be here, to be home, to have this life, and to have had so many people in my corner throughout this process. While I was in the hospital, I received so many cards and messages from so many people and I have no words to express my gratitude to all of you. Thank you from the very bottom of my heart.

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