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  mind. 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.

A Letter to the ‘Person’ who Saved My Life

Dear __________________________ (Fill in the blank),

There are truly no words to express my gratitude for what you’ve done for me. At 4:23 yesterday I began receiving my life saving marrow cells. It seemed like I had been waiting, in some form of anticipation (fear) for months, the actual event was anti-climactic but the significance was far from it. I have been tethered, in every sense of the word,to my Hodgkin’s Lymphoma for just over three years now. Most of the time in the fashion of IV, but that is truly just the physical manifestation, because in all honesty at times it has been all consuming in ways unimaginable. Today is the beginning of the end of my relationship with my Hodgkins and an opportunity to have a long, happy, and healthy life. You have made that a real possibility for me and I cannot thank you enough.

This life saving material did not arrive in a special conduit nor did it enter the room in an ostentatious way, it was unassuming and selfless. A Chaplain came at the onset to bless the marrow, you, and me. It was a beautiful simple prayer that be God’s will to ultimately allow these cells to save my life. While he was speaking I thought of you, the person who has sacrificed for me, a complete stranger. I also thought of all of you, the ‘people’ who have taken care of, encouraged, supported, and helped me get here along the way. And all of you also deserve my gratitude. When a person is diagnosed with cancer they do not endure it alone. It effects their family, friends, and community and it is a community who takes on the healing. So thank you for being an integral part of that for me!

 

When the last cell was infused around 8:30, I did not feel differently but yet knew that I would be. I firmly believe that “You don’t have a right to the cards you believe you should have been dealt. But you have an obligation to play the hell out of the ones you are holding” and right now I’m holding a second chance and I’m going to “play the hell out of it” thanks to you.

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With my deepest thanks,

Krista

#PODLife

Now that I have been here nearing a week, I am getting the lay of the land. And from what I can tell, in many ways it functions like college. On Day One you lug your luggage to admissions and obtain your room number and allow your luggage to be tagged. The difference is that as an adult we could afford valet parking, which gets us a little closer to the actual admissions area rather than doing the hike from the furthest parking garage with the rest of the newbies or commuters. Another bonus is that the admissions staff at the hospital takes your luggage to your designated living space, while you undergo your first activity. Maybe someone who went to a private college where this occurred wouldn’t see how this was anything special, but I went to UMASS and lived on the 22nd floor of a tower and my roommate and I only had one trip a piece for the elevator and about a zillion bags. So this time having my zillion bags brought up for me was like winning the door prize.

My first activity (putting in my Hickman line) ran over like a bad lecture about Student Living and I didn’t arrive to my room until the evening. So my bags were all jumbled in the corner of my cramped new space. I was too exhausted at that point to care, but it was oddly reminiscent of my corner room my freshman year. Freshman year, my roommate and I landed a corner room, one of the four worst rooms on the twenty second floor of the tower. The space was so small that we had to loft a bed and stack our desks so we didn’t have to climb over other furniture or each other. This room wasn’t that bad, but I definitely had to be acutely aware of my maneuverability. It had a similar view to my college dorm as well, both were of the building next door. The night nurse told me not to get too settled because I would probably move in a few days, which I was able to do. And my new room was amazing better than any z room UMASS had to offer. It was also the room I was shamelessly scoping out during my daily laps in the pod (instead of the quad). My day nurse (who is awesome) told me on Easter that my new room was ready and it had a surprise waiting in it and boy did it ever. My soon to be mother in law and pretty much all the nurses on the floor helped me haul my luggage three doors down to a room with a much nicer view and an even better 50 inch flat screen television. It was a donation from a community member and it circulates throughout the hospital. I’m glad to have it for my stay, it would have been seriously useful in college, especially when the Sox were on. Thanks to Adrienne, I unpacked and officially settled in to my new residence for the next month or so. The picture went up, drawers were stuffed, toiletries set up in my private bath (again something I wish I had in college). All in all, my spacious new digs were an added bonus.

Just like college, you essentially follow a schedule that you get credit for. The big difference is how these credits are calculated and used. One set is accumulated over four years for graduation the other over your stay for discharge. In a collegiate environment you get credits for grades, here you get credits for being an active patient. One who gets up and does laps in the pod (I try to do at least 30 minutes a day), one who eats the amounts preset by the dietitians, and drinks the desired amounts of fluid to avoid secondary issues. They credit the amount fluid you intake and the amount that is voided. I mean that literally. Every time you use the ladies, you pee into the hat and the amount is recorded. Not something I ever thought I’d discuss publicly or receive credits for. You also get points for mouth care, taking your meds, etc. All of this helps build your transcripts (patient history) but the blood work numbers will be the deciding factor on when you can be discharged. I like to think of them as the final.

As of right now, I get up around 5 and begin the mouth care regimen, wait for my vitals and morning meds, and then take a walk in the pod. It’s an easy phys ed credit. Walking for 20 minutes individually or dancing if you have your partner (Issac Victor Pole – I.V. Pole).

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After that I have someone tape up my hickman line with what is basically press and seal Glad wrap so I can shower. Showering is my absolute favorite part of the day, because you get some real privacy (unlike in college) and because you are free from the pole. I get dressed in one of my individually pre-packed outfits that is comprised of pants, a tank top, shirt and coordinating headscarf. Then I’m ready for the day, I find things to do to stay busy like crossword puzzle with Steph via speakerphone, talk and text to my family, chat with visitors, color, grade, draw, etc. I order room service, although the food quality is similar to the dining hall of most campuses. At night, I FaceTime with Josh and Jax and get bed ready. I’m usually in bed by 8:30.

I’ve had my chemo cocktails for the last five days in a row and I can say the drugs here are better than in college, mainly because they prevent you from the hangover that follows a night of partying. This morning I had full body radiation and feel like I laid out in the sun all day. I’m just as tired as if I had done that and laid out in the quad in the nice spring weather. So today, I’ll get some rest because tomorrow is my the big day. DAY O, when I get my new immune system! And then I’ll be twenty, and ready to relive my college days?

 

Admitted

Admitted is a polysemous word, or a single word with many definitions. It originates from the Greeks with the root meaning “of many senses”. I’m fairly certain words of this nature, while being a word lover’s dream, are really meant to trip everyone else up. They are part of the reason why the English language is so difficult to learn. You feel like you’ve got a handle on it and boom the word you just learned really means something totally different depending on context. Take admitted for example. I have to admit that I was not looking forward to be admitted for my stem cell transplant. There it is in one sentence, both definitions: 1. a confession of sorts and 2. being permitted to enter a place. In this particular instance, I genuinely dislike both of my options: 1. because I hate to discuss my feelings and 2. because no one wants to enter a hospital and not leave for 30 days (unless it is legitimately a spa for relaxation purposes). And yet my disdain prevented neither.

So here I am, in the hospital and I admittedly feel like I already want to go outside and feel the warm sun on my face. My gigantic bay window doesn’t quite do the job, it only shows me the sun and blue skies. It’s a tease. However, I’m sure I’ll feel differently when the temperature drops back down next week and then I’ll be glad that I don’t have to go outside. I was admitted on Wednesday and my initial welcome didn’t go so well and I had such high expectations after meeting two fabulous nurses who talked wedding planning with me. My first dose of the transplant process was to have a Hickman line put in opposite of my central line port. I was already skeptical of this new line because it was going to be a gaudy accessory, one that was attached to my body with three lumen that dangles externally. The only dangly accessory I like are earrings and this is so not an earring.

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Most people undergo the fifteen minute procedure without a hitch, and for one reason or another I seldomly fall in the category of most people. Part of the issue is that I have bad veins, I have had tiny child veins since I was a tiny child. I am a phlebotomist’s worst nightmare. It got even worse after my massive DVT/ blood clot on the left side in September of 2015 when my killer body tried to be literal. I had previously mentioned this incident and was dismissed that it would not cause any complications. Wrong, it did. After trying several times, I ended up with the Hickman on the same side as my other port and three hours worth of sedation in the form of Fentanyl and Versid. When I finally came to, I practically threw up all over my fiancee and my in-laws. Not my finest moment but at least they’re family so it seems more acceptable. Hell my parents have probably seen me throw up numerous times and so have some of my friends after a night of drinking in college (of course these occurrences were few and far in between). My mom probably thought I was drunk when I called her later that night. So needless to say night one, not so great.

I have to admit that I’ve never had a hangover and this was true in this instance as well. Fentanyl and Versid were no match for my schedule. I was up at five, walking the pod as the masked marauder by 6:00 and trying to find things to do, which wasn’t too hard since I brought so much with me. I had my first dose of chemo yesterday, which is part of the conditioning process and consists of Cytoxan and Fludarabine and what feels like 700 other meds to mitigate their effects. So I spend most of the day hooked up to my walking partner, I.V. Pole. We are just getting aquatinted so it may take some time to become simpatico.

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I must admit that I’m nervous of what the rest of this process looks like but glad I was admitted to one of the best Cancer Center hospitals in the country. So for now, I’ll go with the flow and keep busy! Steph and I already worked on a crossword puzzle this morning.

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.  So 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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Making It Count

I often tell my Seniors to really make it count in those last months of high school. We’ve all been there and despite the complaining about homework, a specific teacher, or the latest drama those days flew by. I remember the beginning of senior year and thinking I had all the time in the world to get my applications done, to spend time with friends, to be a Senior. And then the months passed as quickly as I could turn the pages of the calendar. As a self proclaimed procrastinator (when it matters), time passed so quickly that I almost missed my acceptance deadline at UMASS and had to take the day off of school to drive to the admissions office and pay my deposit. (Made me seem like a great collegiate candidate.) Senior week went by the fastest and was by far the most important to me. It was that last chance to spend time with your classmates before we all went our separate ways. I have fond memories of graduation rehearsal and Erik and I repeating “right, left, right, left” like somehow we forgot how to walk, opening my eighth grade time capsule at the courtyard barbecue, having a ‘few’ around the fire at Mike’s house. It was our time. I definitely felt this way about these last two weeks, prior to to my stem cell transplant. This is my time and I’m going to make it count.

The last two weeks have been a whirlwind in relation to time. I tried to sneak every person and every activity possible. So I pretty much ‘ran around like a chicken with their head cut off’ and loved every minute of it. I spent my time laughing with friends and family. I went out to dinner and breakfasts (at my favorite spot where Becky and Maria just know my order) with my high school friends, my work friends, my family, my newly acquired friends, and my fiancee. I basically went out upteenth times, probably gained fifteen pounds, and don’t mind one bit because restaurants are forbidden for 365 days. Aside from eating lots, I also got an opportunity to visit the Museum of Fine Art in Boston with my parents where I was able to see Paul Revere mimicking Jack Black (but really the similarities are uncanny).

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 I also had the opportunity to go to a painting party where my new family (Josh’s family) got to meet and enjoy my old friends. It was a blast set up by my amazing soon to be sister in law.

It was a great way to end my thirty fourth year, start my thirty fifth and go out on high note for transplant. My birthday fell during my last full week home. It was low key and perfect, especially since I will have re-birthday soon once my stem cell are transplanted and then I will be 20! It was exactly what I needed to get in the right head space for my year of isolated interactions. I have decided to refer to it as isolation for the time being, so I can at the very least pretend it is a part of my foreign policy platform should I ever get involved in politics. (A social experiment of one if you will.) These two weeks went by fast and I certainly made them count!

“The Works”

The expression “the works” is an idiom with two meanings: 1. Everything; the full range of possibilities and 2. Severe treatment.

Now, I’ve never really been one that orders “the works”, on anything really. I can honestly say that I’ve been to the famed Jack’s Hotdogs and simply ordered my dog with ketchup only. (This should come as no to surprise to my friend Becky who works at my favorite breakfast joint, where I order the same thing every. single. time.) I’ve never dropped my vehicle off at the mechanic and asked for “the works” either, primarily because of cost; but still it suffices as a suitable example. However, today I went to Dana Farber and had “the works” and was put through “the works” (in the Italian sense, like when the mafia men give someone work someone over).

It actually started yesterday. I went to the second floor labs and needed to have twenty tubes and one urine sample. Now my max tubes previously was approximately sixteen for the clinical trial prep testing. Twenty, seriously? Even the phlebotomist said it with an exclamation. Luckily my port decided to cooperate (so there was no ballet recital) and they had hats (the only convenient way to pee in a cup). After my blood sacrifice, I headed over to the Dana building for a PET scan where I was injected with nuclear medicine, told to let it stew for an hour, and then scanned for microscopic cancer cells that at this point would definitely be considered rogue. I surprisingly had little scanxiety this time around (although I think my future mother in law may have taken it over for me). And then I got to go back to the hotel with zero results and return at seven a.m. for more.

So I started off my day with a nice man informing me to undress from the waist up and keep the open part of the johnny in the front (oh joy)! Like I said once before it’s all fun and games until someone winds up in a johnny. But alas there I was and there he was applying electrodes and cold gel like substance so he could properly conduct my echocardiogram. So after getting to hear my heart song and putting my clothes back on, I got to go hang out in a glass box and repeatedly blow into a tube. I have to say the woman who does the Pulmonary Lung function testing is awesome, she makes being encased like a zoo animal almost enjoyable. From there, I was able to meet my social worker who had the task of evaluating me. I was initially skeptical, because well the first social worker I was assigned was a hugger and I am not. Luckily, this one did not attempt to hug me and did not make me cry. She was very straightforward and inquired about how I perceived my transplant and that isolation that followed. She was pleased by my planner and the support offered by my parents, despite that my ever so witty father joked that I was not in their planner way back when. I like to think people find our joking nature refreshing, either that or they think we’re all insane.

After that we met with the clinical nurse that I had been emailing for quite some time with my laundry list of transplant questions. And she was as fabulous as I had hoped. She thoroughly explained the transplant process and went through the schedule and the expectations. I now know how stem cells work and how they will transform my current immune system. I did uncover that if my donor has a different blood type, mine will actual change as my infant stem cells multiply. I have a better understanding of the conditioning regiment which will consist of chemotherapy drugs as well as a very low dose of full body radiation. I did have a moment when talking with Pat, when the topic of whether or not I had had the opportunity to freeze my eggs before all of this started, came up. It always catches me off guard, the tears. I don’t even think I want children, but the not having the choice is hard for me to accept. Thankfully, the subject passed quickly and we went on to discuss other things. She too was impressed by my planner with the color coded med list and illustrated doctor contact page. I think my preparedness helps bring insight to my control freak nature, which has its pros and cons when dealing with this particular situation.

Following my info session, I had a quick EKG and then I was able to meet with my transplant physician who is exceptional in his field and growing on me on a personal level as we get to know each other. Meeting with him was more of a formality, he wanted to check in and have me sign on the dotted line consenting to this process. At this point any attempt at negotiating had already passed. He offered me data, but I didn’t need it anymore. The decision had been made. My PET scan was clear, the stars are aligning so to speak, so as far as I am concerned it’s a go. And it is April 12th, I’ll check in and get my new cells nearly a week later. I did learn that my twenty year old match was from Europe and agreed to donate marrow cells that matched my genetic cellular make up on nine out of ten factors.

And then on to the radiation oncologist, who explained her portion of the process and measured me for lung blocking which would be used during the procedure to protect my lungs. This appointment was relatively quick, which was welcomed after having gone through “the works” the rest of the day. I am now aware that my doctor like to order “the works” and that nine appointments in two days leaves you feeling like you’ve been through “the works”. But I’ll take it, since it is the last of the hoops I need to jump through before I can start the transplant process.

We did manage to sneak in a quick coffee, several minutes in the healing garden, and lunch. I just didn’t want anyone to think that the scheduler was trying to deprive us of food.

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Humor is necessary when battling Hodgkins Lymphoma at the ripe old age of 32