Tag Archives: Hodgkin’s

Hesitant

I think I have been waiting for something profound to write about or say and I keep coming up empty handed, so to speak. I feel like after all of this, I should have some sage advice to offer, to myself mostly, or at the very least have a wise phrase that others may jot down in their journals – because everyone does that, right? But nope, I have not a thing. However, I did come across a quote, that I quickly jotted in my journal, that resonated with me ; “The things that is really hard and really amazing, is giving up on being perfect and beginning the work of becoming yourself”.

And I have come to realize that just being, for the majority of people, is work. In the words of one of my former students, “the struggle is real”. I’m six months out from my transplant. No gvh or signs of a struggle between my cells and my donor cells. And I just received the official word on my latest test results – 100% chimerism (meaning my immune system continues to be 100% of my donors) and 99% T-Cells (which are responsible for fighting off rogue cells, like Reed Sternberg cells that earmark Hodgkins). So those results are awesome, as were my 28% increase in lung function since March. I’m relieved to say the least, and have to admit that I was hesitant leading up to these six month benchmarks. I was hesitant to believe that they would be well…good. I interpreted every itch as the dreaded Hodgkin’s itch (by the way intense itching is not normal and is often the first sign of an underlying problem), and every abnormal sensation an angry lymph node waiting to implode my new sense of well being. And I’m not an anxious person, thank god. I can’t even imagine how many times a day I would need to utilize the deep breathing app on my Fitbit if I were. And still I’m hesitant to believe that transplant might have been the answer. I’m left with 70% doubt, since 30% success is what the data shows. And I am fully aware that no statistic has ever been accurate in my case, but the numbers play tricks with my mind. I guess no different than Calculus, I had serious doubts of passing that too. Most of the time I can look past the hesitation, but it creeps up in the oddest ways. So I have to work on it even though it hasn’t stopped me from doing anything, that’s for sure.

I’m full steam ahead planning for our wedding two years from now. And admittedly, prior to transplant, I dreamt about marrying Josh but was never quite sure we’d get there. It’s hard to future plan, when you are confronted with the possibility death. I know Tim McGraw makes it sound almost exciting in his song – “I hope you get the chance to live like you were dying”, but it isn’t and all I can say to that is F-you Tim McGraw. Now don’t get me wrong, this experience has changed my perspective and my life in a positive way, but still… Anyhow, future planning is in full swing. I already committed to a photographer, a caterer and a dj. So much for my commitment phobic nature that apparently disappeared after my lengthly relationship with Josh, Dr. Z, and Hodge. I’m having fun with the wedding planning and getting back into shape for it. I like to call it sweating for the wedding, Josh does not – especially when I make him get up early on the weekends to hit up the bike trail. But he humors me anyway. I’m more or less committed to treating my new stem cells better than my last ones, so as a result I have developed an intense relationship with Blaze (my fitbit). We count our steps, flights of stairs, and punches thrown (boxing dvd) all while enjoying Fabletics, Jax walks, and the outdoors. I genuinely feel great!! And I can’t be more thankful for it. So I guess my words of wisdom, that I won’t hesitate to tell you are “always be grateful, thankful and know that you are blessed”. And for more gems like this keep reading (National Novel Writing Month is November and I just might be working on something big). And in the meantime, I’ll keep doing the hard work of becoming myself.

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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

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.

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.

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 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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Stuck

Somedays I think I may be stuck with Hodge forever, and I imagine no one could fault me for having that frame of mind considering it has been nearly three years now. When all of this first started, I had all the optimism of the world. And that’s not to say I didn’t have my moments, I’m sure my family and closest friends can attest to that but I still rocked my multicolored mohawk and headscarfs like all of this was a passing phase. But it appears that this phase is lasting much longer than I anticipated, it feels like I’m stuck in the thick of it. Like I’m standing still, while life is happening around me. People are taking weekend trips, flying off to Europe to take in the Old World, getting promoted, buying new homes, planning weddings, heaving babies, just living. And yes, I know that I could get away for a weekend but ultimately I’m stuck dealing with my cancer no matter what. I have to make sure my meds are all packed, that I actually have enough energy to actually go otherwise it wouldn’t be worth it, and more importantly if it follows my latest treatments if my counts are high enough to even leave the house. Like this weekend for example. On Thursday, I started to feel sick (I mean not cancer sick, like normal people sick) so I left work early only to discover that my white counts tanked and I was unfit to be around other people (especially children, my high school students, anyone that may sniffle or cough into the air). In other words, no work, no social engagements, no living life as usual. Some may say they enjoy being home and prescribed to do nothing, but the irony is that I am not one of those people. However, I can say this weekend, despite canceling multiple plans already, I’d rather be home so I’m closer to the kleenex and the numbing mouth wash that makes my mouth sores that much more manageable. So I’m stuck on the couch for the most part and I’m bitter about it. I’m bitter about how cancer has infiltrated and disrupted my life. Truly, I have been lucky so far. This is the first treatment out of six that has really knocked me down. And I’ll rally, but for now I’m hoping the referee counts really slow before I have to get up again. Like maybe he could get stuck around 7 so I have three more days to recuperate and getting back into the ‘kick some ass’ mindset.

I have to say that if I am stuck, I’m glad it’s with Josh. My relationship goals have always been to have the type of relationship that Dax Shepherd and Kristen Bell have, you know the kind that is full of love, laughing, hilarious awkwardness, and real. Despite my miserable state since Thursday, Josh has still managed to make it suck less. Last night he came home from work with Ben and Jerry’s vanilla for dinner, because that was something I could actually eat. Now how could you not love a man that brings you ice cream for dinner and even encourages you to eat it for breakfast. He also brought home Panera mac and cheese, soup and and my favorite coffee. I am one lucky girl. While we were catching up on Hulu last night from the couch, which I’m stuck on, he was going to put away the block of cheese he was snacking on and I reminded him to put in the fridge instead of the cabinet like last time. ┬áHe responded that he was glad to see that no matter how bad I felt, I could still sass him. And sass him I did. That’s the nature of the relationship with the man I’m stuck with and somehow it makes weekends like this seem more doable. It’s also part of why I’m willing to take a chance on the stem cell where I will be stuck for a lot longer than a weekend.

I’m not sure people who have never experienced cancer first hand understand how it feels to be stuck with cancer. Stuck watching everyone else around you move on, stuck worrying about just how much money all of this will actually cost, stuck wondering if it will all turn out to be worth it. My biggest issue this time when I was told I would undergo treatment again was that I was signing up to be sick. And thus far that appears true. But hopefully in the long run this course of chemo works and the stem cell transplant to follow sticks because than and only then will I get to begin a new phase of my life and move on without Hodge in tow.