Tag Archives: BMT

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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#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

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.

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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. ┬áSo 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.

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