All posts by kristamariep

I always struggle to find the right words to describe myself. So rather than try, I'll list some words and you can piece together whatever description best suits me after reading my blog. Thirty two Dedicated Golden Retriever Mom High School History Teacher Loves Art History and Russian History Fascinated by psychology Lover of Books Springsteen fan Fashionista Believes in retail therapy and Emily Post Netflix subscriber Stubborn Cancer patient Hodgkins Lymphoma Fighter Strong Emotional Social Sarcastic Snarky

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.

IMG_20170412_111852_214

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.

IMG_20170504_210440_038

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.

20170507_165224

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.

IMG_20170507_165426_866

New to Me…

When you are little, everything is a new experience. The first time you (insert pretty much any activity here). The difference is that the majority of people don’t necessarily remember those new experiences if they occurred within their first three and half years. The inability to remember things prior to around this age is called childhood amnesia by scientists, and thought to be the result of the absence of language skills. According to studies, females tend to have an easier time recollecting earlier memories than their male counterparts. The gender difference often lies in communication skills that develop early on, females tend to tell elaborate stories about their days beginning early on allowing them to make connections to their memories. I know I was definitely one of those girls that would recap every part of the day at the dinner table and can generally remember the details of my younger years. My ‘sort of’ brother/ oldest friend always states that he has virtually no recollection of our childhood years. So maybe there is some accuracy to the study. Regardless, right now everything seems new to me. After all if we go by age of my stem cells they are only fourteen days old, which is definitely new to me.

This stem cell transplant experience has been an interesting one and not at all as I expected. I’m not really sure what I thought it would be like, but I anticipated a more caught somewhere between ‘hope and hell’ kind of thing. So much of what I read, heard from my support group or came as a disclaimer from my doctors made this experience sound overall horrific. Now I’m not saying it has been easy in any way but it has not been horrific either. I managed to keep myself occupied and make some new friends along the way. I have also begun an exercise routine in hopes of maintaining strength and shifting my new stem cells to a healthier lifestyle. I started off walking a mile and have since gone to two miles out in the pod. Walking in the pod isn’t exactly scenic so I requested a stationary bike to add to my new routine. I met with PT and was off and peddling. This new level of dedication and consistency is certainly new to me. And I like it, also new. It has been a long time since I can sincerely say that I enjoyed exercise, not since Steph and I took up running one Fall several years ago.

IMG_20170503_114356_194

This new experience has also led me down a path of relaxation, albeit forced, that I am unaccustomed to. I tend to be a bit of a workaholic and have primarily focused on that over the past twelve years, so this forced break is both new and a little scary for me. In the last three weeks I have watched countless hours of Home and Garden TV, movies, a whole Netflix season, read a whole book in a day, scrapbooked and colored. I have to say though that I don not find coloring all that relaxing despite the hype it has gotten over the years. I find that I get stressed out if my picture isn’t perfect. So I may need to practice “letting it go” and “coloring outside the lines”.  I think finding new hobbies and ways to focus my attention on other things may be rejuvenating and actually help me reenergize for work when I can return next year. I may also need to get accustomed to napping, because on days like today I’m exhausted.

IMG_20170428_111209_680

All of the medical ‘stuff’ is new to me as well. It may feel like I’ve been working on my med degree for the last three years, but this experience has led to many firsts. I needed platelets for the first time and they look like orange juice. Creepy and interesting. Apparently they can also have a green tinge if a female on birth control donated them. Again creepy and interesting. I have learned all about cell growth and their functions. My waiting game has officially ended. My cells began engrafting yesterday and by today I had 110 neutrophils or new cells created by my new stem cells that will contribute to my new immune system. I have to say that I am very excited about it. I’m still treading lightly and am cautiously optimistic because there could be snags related to gvhd or graft versus host disease along the way, but for now so far so good. I’m hoping to be home sometime next week as a result of my new cell growth. But before I get to leave, I have to undergo a series of classes with the PAs, nurses, and nutritionist to learn how to get back to life as an allo transplant patient. In many ways I’m excited about this new phase and am truly blessed to have the opportunity to get a chance to start new and the support of so many to help along the way! Only this time I’ll be able to remember all of these new things, even in the next three and half years of my infant stem cell life.

IMG_20170430_173700_628

The Waiting Game (The Technical Version)

I’ve always been a huge fan of games, it may be my mildly competitive nature or that I like things that require me to think. In more recent years, gaming has become popular. Both in the world of video games and board games. I can say that I lack the coordination to be a video gamer as evidenced by several Wii mishaps involving Steph and the controller. So, I generally stick to board games. Steph and I get our fill on our two week vacation every summer at the lake. We make it a point to purchase some new games and often play our old favorites in addition to our daily crossword puzzling. Admittedly, however, there are not a ton of two player games so we sometimes have to be creative with the rules. In the last year or so, we have found others who enjoy games like we do and some far far more than we do. We attended a game night here and there and had tons of fun. A few months ago we had a game night at Steph’s with our coworkers and laughed till we cried while playing Telestrations. It is definitely a new favorite. It’s one of those games where a simple innocent vet’s office drawing turns into an animal sacrifice as a result of some creative interpretations or Karen.

 

Games are generally more fun with multiple people. I have never loved the concept of solitaire. Although I have used the deck of cards, that came in bag six of Halley’s transplant activity bags, to play it. At least it is a legitimate game. Right now, I’m in the middle of the WAITING GAME. I’m not exactly sure how I ended up playing this game, but I’m pretty sure it’s because I was voluntold once I signed on the dotted line for my Bone Marrow transplant. I had transplant eight days ago and was told on that day that from here we wait. We wait for your counts to fall to unbelievably low numbers and then slowly rise. The rise is the proof of marrow engraftment, meaning that it took and my new cells are doing their job. So here I am on Day +8 with an all time low for me with a 0.30 white blood cell count, 29 hematocrit, and a 42,000 platelet count. And they can still go lower before they come back up, hence the waiting game!

Once the cells engraft the rise should initially creep up and then steadily rise. I receive Neupogen shots daily to help stimulate the white cell growth factor. And I’ve played this portion of the game with previous treatments, but marrow itself takes longer to engraft and regenerate. I have been told it can take up to fourteen to twenty days. Right now to me, that feels like a lifetime. One thing I have always lacked is patience, even though it may not be that noticeable. So I watch my progress chart waiting for the end game which is a wbc/anc of 1000 for the win and a one way trip back to the Berkshires.

18192386_10211003712387633_6480871513079406898_o

I am luck that I am still feeling well despite the severity of my counts (which again are on schedule and where they are supposed to be). At least this part of the game is predictable. I’m a bit tired and find that I need an extra morning nap. However, I did just read an article this morning about how important napping is in Europe and has been found to increase intellectual capacity and energy. So I’ll take my nap and consider it an energy boost to keep playing. I get my activity points daily and go out walking in the pod. I head out with my headphones and cellphone to record my steps in an effort to stay active and prevent atrophy. Also, just for something to keep me busy. Yesterday, I actually managed to put in an hour in the pod and walked just over two miles. I was impressed with myself, plus it makes the game more tolerable. Studies have shown that activity helps rebuild faster too. And I keep busy in other ways too, but I’ll be happy when I see my numbers rise and the Waiting Game is over.