Tag Archives: allogenic stem cell transplant

Visitation Rights

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Growing up, my house house was the place we congregated at. I would say from middle school on, it was no surprise for one of my friends to just show up at the house. My closest high school friends became a permanent fixture. I even remember being ousted from my own couch, while my friend Mike staked claim. Eventually it just was like that, and my parents, especially my mom, welcomed our ‘guests’ because then she knew where we were and what we were doing in those formative years. By the time we could all drive, our house had a revolving door. To this day my friend Matt still comes to the house unannounced and I smile thinking about those days when it was a regular occurrence. We would often sit around the kitchen table and talk or play Pitch or hang out in the living room and watch movies. It was nice having such a close knit group of friends that felt at home at your house. Several of my friends even took up residence at one time or another, making for some interesting stories. I wouldn’t have wanted it any other way.

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But as you get older those friendships remain but the frequency at which you see them often isn’t. One of my oldest friends, Tammy, and I actually came up with a New Years resolution years ago to find time at least once a month to get together and doing something new. It was probably one of our most ingenious ideas because it has taken us to new restaurants, the theater, even Philadelphia on the train. We don’t always find the time, but at least we give it our best go. A lot of the time in order to stay in touch with your adult friends we resort the phone or social media. On occasion, I prefer to send letters like to my oldest and ‘bestest’ friends Kristy and Aimee. They serve as nice reminders that the thought is still there. I fortunate to have stayed in touch with most of my high school friends and equally as fortunate to made new friends as an adult through work. I love my work people. We enjoy breakfast daily before the work day begins and the dynamic is both hilarious and much needed to get through a day of ‘adulting’. It is one of the things I will miss most over the course of my year long hiatus.

I initially thought that i wouldn’t really want to see people during my hospital stay, but thus far that hasn’t been the case. I thoroughly enjoy my visits from my family, friends, the doctors, nurses and the pcas. I have had some phenomenal conversations over this past week in a half with the some of the amazing nurses. It helps pass the time and I’m so social by nature, so I need those interactions. I have heard great stories about homelands in Jamaica, travel, weddings, promposals, life in general. The doctors and nurses come in unannounced like my old days, but my everyone else has visitation rights. That doesn’t mean that you have to stand outside the door and look in like an observation tank, despite what Matt thinks. There is no sign on the door that says don’t touch the animals, but close. There are signs instructing people how to prepare for their visit.

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When you get to the pod you must check in at the front desk where you will receive your visitors badge and closable plastic belonging bag to put any personal items that you need to bring into the room. Otherwise you will be directed to put your things in a storage locker nearby. After you get situated, you must go to the ‘dressing station’ to hand sanitize, put on your purple gloves, and don your hospital grade mask before you enter my room. So needless say, everyone I see is wearing purple gloves and a mask. It’s an odd fashion trend in my ┬ámind. I, however, do this process in reverse, only when I leave the sanctity of my room do I need gloves and mask. It is also then that I get to see the actual faces of the nurses I interact with on a daily basis. So far I have enjoyed visit from my fiancee, my parents, my future mother in law, and my friend Karen. Despite the process, the visiting part is the same. We talk we laugh, etc. Except visitors cannot have any food or drink in the room, because that would mean removing the mask and they have to leave and repeat the prep process if they need the restroom. The only awkward part is the goodbyes, especially with Josh. We can’t hug or anything. It’s like the end of a first date, when you aren’t sure of what to do next.

When I return home, visitors will have to undergo a similar gloves and mask process to visit me and I will have to do the same to leave my environment. So gone are the days of open door policy and now visitors have to follow the visitation rights.

On the Rocks…

When you hear the phrase “on the rocks” maybe you immediately think of a chilled refreshing alcoholic beverage or maybe you envision Tom Cruise pouring you a cocktail straight out of his 1988 New York City bar. Either way it is all about letting down your inhibitions and relaxing for at least the twenty minutes you are sipping your beverage and the two hours after the alcohol lingers in the system and your brain believes that it has been rewarded with dopamine. After all the consumption of alcohol is ingrained in our history. Hell in America’s early years it was safer to drink alcohol than take a chance on “dirty water” (No offense directed at Boston or the Standell song). Alcohol was a staple in many communities, even a currency in some. George Washington actually had to send a federal army into western Pennsylvania to put down a rebellion of farmers angered over Hamilton’s whiskey tax. Alcohol was some pretty serious business. That’s also probably why Temperance Societies in the Antebellum years fell short of a ban and why the Prohibition Era is characterized by the likes of bootleggers and speak easies. Today, people enjoy an adult beverage here and there which is a non issue when done in moderation. Women enjoy wine nights with their girlfriends and men indulge in craft beer gatherings. One can become a connoisseur of sorts, which is something I know very little about. Now don’t get me wrong I enjoy a sweet and fruity glass of Riesling, or a tart lemon drop at the camp on vacation, and the very occasional rum and coke for old time’s sake (when I apparently used to drink like a man in college temporarily). In the last three years, I can probably count the number of drinks I’ve had on both hands, mostly because with a cancer diagnosis comes a slew of meds that may or may not interact negatively with alcohol. Plus, I’m not a huge fan of testing the limits, mostly because I don’t want it to be like that one time in college I had a ‘little’ too much and had my date drop me off at a different apartment building just in case he was a Criminal Minds serial killer and I tried to go in the wrong apartment and my neighbor had to bring me home.

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At the current juncture anyhow, most of my cocktails are in the form of chemo, but this time I ordered mine on the rocks. I was elated to learn from my PET scan on the 10th that I had a complete response from the heinous GND combination that had landed me in the hospital the week before and deflated in the same instant I learned that I had to complete two more cycles (four more treatments) before I could go to transplant. Since I couldn’t run order a scotch on the rocks to drown my sorrows I ordered my chemo on the rocks instead. Cryotherapy has been studied and claims to be a deterrent in the development of chemo related hand foot disease and mucositis. I have tried chewing on ice for the infusing period of the Doxil (the red liposomal devil) and it hasn’t quite been successful, but that could be attributed to the sheer heinousness of the drug, the insanely high dosage needed to kill off Hodge, or the fact that I take Cellcept which may complicate matters. Either way, it didn’t stop me from attempting cryotherapy on my hands and feet, so there I sat with plastic gloves on submerged in a bag of ice and hospital socked feet in a basin of cubes. It looked hilarious, it was certainly entertaining, and it may have been the first time I ever considered taking a warm blanket. At this point, I’m willing to try just about anything to make this process easier as I prepare for my upcoming stem cell transplant, which officially has a timeline. I will check in the hospital the week of the 9th of April, for what will inevitably be the most difficult (and painful) thing I will have had to endure yet.

As I get closer to this check in date I can honestly say I’ll probably need a stiff drink!