Tag Archives: Bone Marrow transplant

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…

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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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.

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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.