Tag Archives: Bone Marrow transplant

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.