Tag Archives: cancer patient

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

# PatientProblems

This may come as a shock to some, but I have been known to have very little patience. I attribute that to being an only child and rarely having to wait for or share anything. And when I was forced to wait, per say in a restaurant, I would dance around and hope that other diners would give me oyster crackers for my efforts. In other words, if I have to be patient I have to find a way to stay entertained. As an adult, I realize that patience is a virtue…blah…blah but that doesn’t mean I have to like it. After all, we as thirty somethings are just on the cusp of the instant gratification Millennials (the generation following Gen X). Now after this past year and a half I recognize that instant gratification is not in my future (and I didn’t even have to call a psychic for that information). But I would love for one instance where at it at least seemed plausible.

Since my remission reveal and blood clot debacle, I have spent increasingly more time among a variety of medical personnel – my tried and true oncologists, my new Polish cardiologist, x-ray techs, my favorite nurses and more. Aside from the running around to attend these appointments, I admit I enjoy bantering with Z, talking with my favorite nurses about life, and getting to know some of the newbies added to my schedule. But despite all of that, I would at some point like to catch up over cocktails rather than pop in once a week to have my port poked for a blood draw, or gooey sticky ultrasound gunk spread over my body to see if my clot is clearing. Which is and I officially have a neck again and my face actually looks like me. Unfortunately on Monday, I was told I have to reenter the world of dreaded Prednisone steroids to clear another bout of pneumonitis. Hence my issue as a patient with patience. There is nothing I hate more than steroids (well cancer, but nothing else). Steroids are awful and the last time, they made me physically unrecognizable (And Halloween will be over so I cannot even attempt to pass myself off as Pumpkinhead from that terrible horror flick) and more importantly they made me overly emotional and angry. I told Josh he should probably ship out in a couple of weeks once they kick in to avoid a repeat of last time, when he had just moved in and I did phenomenal job of testing his patience. Now I know he won’t actually go anywhere, but I have valid concerns about how these drugs impact my life and my already ‘charming personality’ (hopefully everyone caught the snark in that). I have to take them, because if I don’t my reoccurring pneumonitis (lung inflammation) may become fibrotic and permanent impairing my ability to get a full breath of air for the rest of my life. So I recognize the importance, but I’m a bit aggravated that once again I am in the 5% that contracted this nasty lung side effect in the first place. All I want is a chance to celebrate my remission and attempt being normal for five minutes.

I didn’t realize how not normal my life has become. I’m so used to doctors and appointments and what happens if…that I forget sometimes that other people don’t have to do those things. As it was just the other day, I backed into Josh’s car in our own driveway (minimal cosmetic damage – no one was hurt) and I laughed because it was kind of nice to worry about something that was not related to my health, only the fact that my garage and driving privileges should probably be revoked. That’s when it hit me that my normal isn’t who I used to be, it’s who I am now after all of this. And I hope some semblance of even a new normal surfaces and my appointments slow down, I can actually walk up a flight of stairs, and my marriage to Hodge is finally terminated (I think I’ll probably be skeptical or have some form of scanxiety at least until I’ve been in remission for a year). I guess until then though, I have to learn a lesson in patience and just enjoy the moment!

A day in the life…

My eighth grade students are currently working on their career fair projects. They had to conduct research on five careers that peaked their interest and five potential colleges that they would possibly consider after high school based on their career choice. Despite a significant amount of hemming and hawing the majority were at least able to muster up enough energy to use class time to complete these tasks. Once they finished the research component they were asked to select one of their career choices to develop an essay, trifold board, and presentation. Enter more hemming and hawing and even some outright complaining. But alas they continued anyway, because failing a pass fail High School Prep class seemed somewhat ridiculous even to them. However, one component stood out to them and it was the section where they were to describe a day in the life of (enter career here). They were taken aback by the responsibilities some of these occupations required in a day, especially since many of the eighth graders complain about having to attend school for six hours and being asked to complete even the simplest of tasks. When I asked them what they thought it looked like to be an adult with legitimate responsibilities, one replied easier than this makes it sound. I just laughed but then I got to thinking about how many roles we play as adults and how different each of those roles really is. I would need to consider a day in the life of a teacher, a daughter, a girlfriend, a friend, and a cancer patient. This was the first time I really considered what a day in the life of me looked like.

A day in my life as a teacher starts off at 5:30 when my first alarm goes off and I awaken to Florence and the Machine telling me to “Shake it Out”. If I’m being honest I hit the snooze at least three times before I have no choice but to get out of my nice warm bed because my second alarm is going off and it is at least seven feet away. I may be a morning person by nature but I’m not crazy enough to want to hop right up and get ready. My morning routine consists of letting the dog out, getting is breakfast ready, drinking some OJ, taking my vitamins, and listening to music while I put make up on and get dressed. I know me, so I also know that I have to lay out my clothes and matching accessories the night before, same goes with lunch and snacks. It’s funny how ever night is still a school night even though I’m almost thirty three. Once I’m ready, I double check my bag and decide if I’m going to bring breakfast or buy breakfast on the way to work. One requires me to make coffee and grab a breakfast sandwich from the freezer and the other to roll through McDonalds or DD on the way in. Once I arrive at school I enjoy a breakfast chat with my favorite friends and colleagues. Anything goes in the history office for breakfast conversation and it rarely directly relates to work. My favorite story was when we were discussing the concept of a cougar and my boss referred to an older women seeking younger male companionship as a puma only the way she said it, it sounded like pewma. We laughed and laughed and we still do especially because once she realized her error she said “oh that’s right I meant coyote.” Needless to say my morning always starts off with a laugh thanks to these amazing women and thank god because the rest of the day is not so laid back. AT 7:45, I take on my teaching duties which entail teaching lessons, organizing activities, managing student behavior, grading, planning, filing paperwork, attending meetings and learning teams and hoping that I get at least 50% of what needs to be done in the course of the day done at school. If not than that means I have a minimum of two three hours each night when I get home and that doesn’t even include making sure my lesson plans are done before Monday of the next week, which usually get done on Sundays. I think if you asked students, their parents, the general public how many hours teachers work, most would think it was just the duration of the school day. I wish that were true. The majority of teachers spend their weekends and evening time dealing with school related things. People don’t realize that the school day is taught teaching and handling problems as they arise in regard to trying to get a student back on track, reporting homelessness, attending IEP meetings, differentiating plans or scrapping a whole lesson when you realize the kids just don’t get it. So all in all the day in the life of a teacher is constantly changing, important, fun, stressful, exhausting and sometimes maddening. AT the end of the day, after teaching my five classes and trying to squeeze in as much grading, organizing, planning, and filing in the fifty eight minutes I have free I’m pretty much spent and some days, the really hard ones defeated. It’s frustrating to see a lack of genuine interest in education, where students refuse to pick up a pencil, submit work, participate in even the smallest way but somehow the teacher is blamed if they aren’t engaged. So a day in the life of teacher is nothing short of ambitious.

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A day in the life as a daughter has changed drastically since becoming an adult. I find that I am so thankful for my parents and all that they have done for me and will do. I find that as an adult part of being a good daughter is checking in with them frequently and keeping them in the loop about daily activities, important subjects, their lives, my life. I like to spend quality time with my parents because after all they are my parents. Fridays are mother daughter night and include food, shopping, movies; things of that nature. I spend time with my dad on the weekends taking a ride to Home Depot or Advanced Auto or some other place he has an errand. Plus I usually see him bright and early because he has sanctioned the garage at my house as his own. In a lot of ways, it’s nice to know that they are always close by when I need them or even when I don’t. So the life of a daughter requires you to be conscientious and thoughtful. You may be an adult but they are still your parents.

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A day in the life of a girlfriend is new to me. As a self proclaimed commitment phobe, I have avoided this title for nearly ten years until about 6 six months ago when Josh walked back into my life. Now starting a new relationship is always fun and exciting but it is also somewhat nerve wracking as you try to gage how your new significant other will react to the way you say things, do things, just are, in general. Josh and I are very different so this temperature reading part of our relationship has been amusing. We have found things that we have in common, started new traditions for ourselves, and agreed to disagree about other things. It’s all new territory for me, so the day in the life of a girlfriend is exciting and new.But it also requires me to be more considerate and willing to compromise than I generally am in my other roles. For example I am a morning person, Josh is more of a night person and it has been interesting trying to navigate what that looks like for us.The best part for me is seeing how these things play out. ┬áBut most importantly a day in my life as a girlfriend is filled with love (I know, so cheesy).

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A day in the life as a friend is busy. I am constantly trying to catch up with my friends in some capacity, via phone, email, coffee, dinner dates, etc. and I love every minute of it. I have maintained friendship from childhood and added new ones along the way and I make time in my schedule to fit everyone in. I believe that these friendships in my life have really shaped my life. My friends have been there through the good, the bad, and the ugly and they continue to celebrate with me, cry with me, and vent with me when necessary. Together we are so much stronger than when we are on our own.

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And lastly a day in the life of a cancer patient is confusing. I say this because there are nearly whole days I forget that I have cancer, but that moment when I remember kind of sucks. And even when I do really think about my cancerous status, there are times I am thankful for it. I am a better person because of it and I know that. But other days I’m worried and angry at the universe for making me have to deal with the big things at such a young age. So a day in the life of a cancer patient is sort of like being on a roller coaster that at the current juncture seems infinite and will continue to seem that way until you hear the words remission. And roller coasters are scary but they are also exhilarating and can change in an instant. So in this case I guess I get to enjoy the ride.

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I didn’t even include dog momma and I can’t even imagine a day for those of you who have to add mom in general. So many of us are so many things and when we really think about a day in the life of…we realize how complex a day really is. More importantly we realize how meaningful a day is where we get to be all of these things.