Tag Archives: Hodgkins Lymphoma

Identity Theft

A year ago today, I returned home from the spa (that’s how people refer to a long term stay at a medical facility, right?) I can’t believe that an entire year has passed since then and I’m still discovering so much about myself and the world in which we live. It was all so simple when I was trapped at home for those nine months, on figurative and sort of literal house arrest. I pretty much spent the time at my leisure – taking morning walks with Jax and catching up on reading, writing, drawing, etc. Put it this way, had I been a bit older I like to think I would have qualified for the Red Hat Society. Then January came and with it was the possibility of returning to work and an abbreviated life. It was awesome to hear the “all clear” and once I walked back into the halls of the high school where I work, it was like I never left.

Nearly five months have passed since then and while some things are exactly the way they were pre- transplant others have left me feeling like I’m in an episode of the body snatchers (that’s a thing, right?) I look in the mirror and am not quite convinced that the woman with the thick curly dark hair is me (I’m pretty sure I had fine straight blondish hair for pretty much ever). I’m also not entirely sure of when I entered the world of hot flashes. I’m pretty sure I’ve been living in my own personal summer for months now, so the advent spring was not nearly as exciting for me. Now it just means that my current system of limited clothing, one leg sticking out from under the sheet and constantly flipping to the cool side of the pillow will have little to no impact. On the plus side, I recently applied the patch and my personal summer is more like summering in northern Canada. So figuring out the middle aged thing at thirty is definitely new, despite having just turned one year old based on my new stem cells. (My friends threw me an awesome first birthday party complete with bibs, baby bottles, a smash cake and even a photo booth. It was really awesome and proves how lucky I am. It came on the heels of my real birthday which also brought great celebrations. So clearly, April is my most favorite month – with two birthdays and a vacation week!) But add the body snatcher elements to my new energy level – think the tortoise in the Tortoise and the Hare and new perspective on life; I’m like a whole new person, a happy person but definitely new.

That must be why someone opted to steal my identity, because who wouldn’t want to be me, right? I found out a week ago that someone stole my identity and bought some stuff. Luckily, I’m one of those crazy people with alerts on everything and found out pretty quickly. I have to say that it has been a hassle to deal with, but in the grand scheme of my life definitely minor. I don’t blame them, my life is pretty awesome! I spent this past weekend showering one of my favorite people with love to celebrate her upcoming nuptials, reconnecting with an old friend who lives across the country, chatting with another friend for hours on the phone, arguing over a comforter set in Target with my fiancee’ (like a real couple, we haven’t had the opportunity to do much of that in this past year other than our long weekend getaway a few weeks ago). My “new” life is as full as my last one, only now the future seems less scary in some ways. That’s not to say that the scars from Hodge have all disappeared because they haven’t, now they just serve as reminders of how far I’ve come. The new me definitely exudes more confidence, looks at the world in awe, (I honestly spent quality time watching a weasel play in the garden at the cancer center today) and makes sure I appreciate everything! So I hope the party that pilfered my identity gets those qualities and not just my money (of which there isn’t a whole lot, so jokes on them).




“We know the dirty secret: You don’t battle cancer. You don’t fight it. If cancer wants you, it walks into your room at night and just takes you. It doesn’t give a damn how tough you are. The only way you survive is through a mix of science, early detection, health insurance and luck. Courage has nothing to do with it.”

Josh Friedman :It’s O.K. to be a coward about cancer, Time Magazine August 7, 2017

I read this article article several months ago and dog eared it, then ripped from the spine, and more recently scribbled notes on it. I needed to mull it over, process what Josh Friedman, the screenwriter, was actually saying. He is a self proclaimed coward, one who felt utterly betrayed by his body. And to me that makes perfect sense. I too am a coward who felt betrayed by her own body. I was afraid that death would come from me like a scene out of the Deathly Hallows in Harry Potter. (We just watched all seven movies these past few weekends, hence the reference.) It had come for so many before me without any consideration for the incredible human it may have captured. At no point did I wrap my wrists and put on pink boxing gloves and think I will strike back hard and death will retreat. That’s just not a thing. People tell me all of the time how brave I am or how strong, but in all sincerity I got lucky. I say that with certainty because one of the strongest and bravest people I had ever known didn’t make it. And for that I agree with Josh Friedman ” Because when we glorify strength without showing empathy for weakness, we end up with a toxic version of heroism, one that links bravery to goodness and cowardice to getting what you deserve.” No one deserves cancer and the people who don’t survive it are no less brave than those who do.

The ‘battlefield’ of cancer is difficult to navigate. There is no right way to deal for the patient, their loved ones, caregivers, friends, colleagues, etc. and yet it feels like their should be. Like maybe someone needs to write a What to expect when your expecting cancer handbook. One that outlines how each party should respond. What to do or not to do. What to say or not to say. I don’t have those answers. Even in the aftermath, I have absolutely no idea. What I know is that it’s never over. Cancer will forever be part of the life you have. And it may manifest as scanxiety at yearly appointments, ptsd, depression, brain fog, physical disabilities, etc. Or may be a shift in thinking, a new zeal for life. Regardless of the good or bad, it exists. The fear of dying doesn’t just one day disappear. If anything you make peace with it and pray that you have the ‘invisible cloak’ that keeps death from finding you for a very long time.

I think it’s important to say out loud that it’s okay to be a coward about cancer. It’s okay to full fledge panic when you hear those words applied to you. It’s okay that the experience sticks with you. No one else has to understand it. You hope others empathize, but sometimes it’s inconceivable unless it’s happening to you. I think the true test of courage is in your resiliency. Can you face crushing disappointment time and again and still find a way to keep pushing forward? Were you able to be thankful for the life you had even when the future seemed improbable? Those aren’t easy things and I commend anyone whether they have ever had a life threatening illness or not who is able to do that.

I guess I needed to mull over this article to acknowledge that no part of this experience has been without cost. And no part has been without fear. And even so, every single time I hear the lyrics:

This is my fight song
Take back my life song
Prove I’m alright song

I want to shout them at the top of my lungs. (Maybe I would have said sing if I wasn’t tone deaf, but I can’t really be sure about that.) But I think it’s important to note that I am no braver or stronger than anyone else. I did what I had to do and thankfully it has worked thus far. I had my nine month scan, with minimal scanxiety attached, and had no evidence of disease or lymphoma progression. I got my first set of vaccines and was cleared to return to work with the understanding that I had to remain vigilant about keeping a distance from sick people and maintaining a healthy lifestyle. More on how I accomplish that in the future. I know that I am grateful for my resiliency but I am equally grateful for having an opportunity to grow emotionally and spiritually as a result. I can ask for help, something I struggled with in the past. I can tell people no, because I no longer need to please. I can relax. I can love fiercely. I can be a better friend.

So it’s okay to be a coward, it’s okay to fight, it’s okay to be numb, it’s okay to feel too much. It’s up to you. Cancer doesn’t decide.

The Shift

Our American culture is fast paced and somewhat chaotic by nature. Maybe that’s the result of how we came to be Americans, fighting for our liberty from the colonial bondage instituted by Britain. So maybe our history has kept us in a perpetual fight or flight mode. Really think about it. Have you ever been to New York City where it feels like everyone is rushing toward something or on a rural backroad that virtually goes nowhere and still there is this one car that is practically on your bumper. I feel like at this stage in the game we are the country equivalent of an angsty teenager and maybe we are just that, after all our history as a nation is relatively new comparatively. Nations, like people, must undergo shifts to illicit change. After recent events, it is clear that we are in dire need of a major cultural shift. One that identifies the issues affecting us in the now; one that acknowledges that there is much work to be done. Of course that’s never easy, it requires introspection and no one likes to answer the tough questions about themselves.

In light of recent events, I was inspired to watch the documentary The Story of Diana because I needed to see an example of light. She was a truly beautiful soul who used her public fame to raise awareness for those who had no voice. She shifted the world view in a humanitarian effort to spark real change. I can’t say that I would have had the courage to walk through a mine field, even with the plastic face guard and padding; but I would like to think I’d at least get suited up. I feel like as individuals there a number of times in life when we face a ‘precipice’ that requires us to make a shift in thinking, perspective, attitude, priority, something. Think about it, in our younger years that may be finding a new table to sit at in the cafeteria, as young adults knowing when it’s time to get out of a bad relationship even though we still love the other person, or in full fledged adult mode acknowledging that maybe our first career choice wasn’t the right one. Whatever the situation is, it requires some pretty serious thinking.

For me right now, my precipice or cliff moment is figuring out who I am in the wake of my transplant. Some things I know for sure are that I am fortunate and I am loved. Everything after that seems inconsequential really but still a part of the big picture. Until the age of twenty two, I was consumed by my academic studies. I had to do well, not because anyone demanded it of me but because I demanded it of myself. Until my Hodgkin’s, I was consumed by my career. And since the day of my diagnosis, I’ve been consumed by the threat of my cancer even if it didn’t appear that way. I’m not saying that it’s all I thought about or tended to, but it has always been a force to contend with. It completely changed the life I thought I would have, for better or worse. I met Josh again and fell in love, which I might have shrugged off prior because I was too busy with my job and instead I get to be busy planning my wedding (which I already have a giant Tupperware container marked wedding stuff for two years from now). I made peace with the fact that there is a very slight chance that I will ever have children of my own, which was initially devastating. Instead we will continue to have furbabies and spoil the other children in our lives. I also never thought I could sport a Natalie Portman pixie or be without Target for 127 days, thank God for Amazon.  Cancer changes things and anyone who says otherwise has never had cancer or been close to someone with it. But you adjust, it just takes a shift in thinking.

Now that I’ve had a bone marrow transplant, the threat of my cancer is still there but it’s more like a distant storm that only rumbles when I have an appointment or when the ‘Nervous Nellies’ in my life I get nervous if I do anything without a hazmat suit even if it is outdoors. Sort of like a reminder that it could rain at anytime, but I won’t melt if it does. So I’m left with this new normal that requires another shift. I need to find a healthy balance in general, my own personal zen. I haven’t quite gotten it down yet, but I think I’m getting there. For now I get to focus on me, planning my wedding, working from home until January in some capacity, writing, reading, playing with Jax, socializing from my patio and various porches, exercising, asking the tough questions, accepting the shifts, and loving the life I have.


New to Me…

When you are little, everything is a new experience. The first time you (insert pretty much any activity here). The difference is that the majority of people don’t necessarily remember those new experiences if they occurred within their first three and half years. The inability to remember things prior to around this age is called childhood amnesia by scientists, and thought to be the result of the absence of language skills. According to studies, females tend to have an easier time recollecting earlier memories than their male counterparts. The gender difference often lies in communication skills that develop early on, females tend to tell elaborate stories about their days beginning early on allowing them to make connections to their memories. I know I was definitely one of those girls that would recap every part of the day at the dinner table and can generally remember the details of my younger years. My ‘sort of’ brother/ oldest friend always states that he has virtually no recollection of our childhood years. So maybe there is some accuracy to the study. Regardless, right now everything seems new to me. After all if we go by age of my stem cells they are only fourteen days old, which is definitely new to me.

This stem cell transplant experience has been an interesting one and not at all as I expected. I’m not really sure what I thought it would be like, but I anticipated a more caught somewhere between ‘hope and hell’ kind of thing. So much of what I read, heard from my support group or came as a disclaimer from my doctors made this experience sound overall horrific. Now I’m not saying it has been easy in any way but it has not been horrific either. I managed to keep myself occupied and make some new friends along the way. I have also begun an exercise routine in hopes of maintaining strength and shifting my new stem cells to a healthier lifestyle. I started off walking a mile and have since gone to two miles out in the pod. Walking in the pod isn’t exactly scenic so I requested a stationary bike to add to my new routine. I met with PT and was off and peddling. This new level of dedication and consistency is certainly new to me. And I like it, also new. It has been a long time since I can sincerely say that I enjoyed exercise, not since Steph and I took up running one Fall several years ago.


This new experience has also led me down a path of relaxation, albeit forced, that I am unaccustomed to. I tend to be a bit of a workaholic and have primarily focused on that over the past twelve years, so this forced break is both new and a little scary for me. In the last three weeks I have watched countless hours of Home and Garden TV, movies, a whole Netflix season, read a whole book in a day, scrapbooked and colored. I have to say though that I don not find coloring all that relaxing despite the hype it has gotten over the years. I find that I get stressed out if my picture isn’t perfect. So I may need to practice “letting it go” and “coloring outside the lines”.  I think finding new hobbies and ways to focus my attention on other things may be rejuvenating and actually help me reenergize for work when I can return next year. I may also need to get accustomed to napping, because on days like today I’m exhausted.


All of the medical ‘stuff’ is new to me as well. It may feel like I’ve been working on my med degree for the last three years, but this experience has led to many firsts. I needed platelets for the first time and they look like orange juice. Creepy and interesting. Apparently they can also have a green tinge if a female on birth control donated them. Again creepy and interesting. I have learned all about cell growth and their functions. My waiting game has officially ended. My cells began engrafting yesterday and by today I had 110 neutrophils or new cells created by my new stem cells that will contribute to my new immune system. I have to say that I am very excited about it. I’m still treading lightly and am cautiously optimistic because there could be snags related to gvhd or graft versus host disease along the way, but for now so far so good. I’m hoping to be home sometime next week as a result of my new cell growth. But before I get to leave, I have to undergo a series of classes with the PAs, nurses, and nutritionist to learn how to get back to life as an allo transplant patient. In many ways I’m excited about this new phase and am truly blessed to have the opportunity to get a chance to start new and the support of so many to help along the way! Only this time I’ll be able to remember all of these new things, even in the next three and half years of my infant stem cell life.


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.


With my deepest thanks,


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.


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.



In the Middle of a Memory

Admittedly, I am one of those people that turns up the radio in their car, sings off key and may even dance a little (who am I kidding, a lot). I often wonder what the driver in the lane across from me is thinking. I’m pretty sure he or she must think I’m insane, unless they too are one of these turn up the radio and turn into the next Carrie Underwood. I use her as an example only because she was one of us that managed to get a spot on American Idol and jettison herself to stardom. I do not see that in my future, mainly because I am secretly tone deaf – not so secret if you have ever actually heard me sing. Anyway, the song I find myself belting out in the car as of late is Cole Swindel’s (sorry if you are not a country fan) In the Middle of a Memory. It just resonates with me and I realized why when I briefly attended Spring Fling at my high school. And yes, teaching high school is like being in high school permanently; you attend dances and games, hear about all the drama, have to figure out the lunch situation, and have homework nightly. The difference is that you actually hope you are not the ‘cool’ teacher. But there I was at this dance because my seniors asked me to come and take pictures since I would be unable to attend prom, when I normally do these photoshoots, and the realization that I was about to pause my life for the next year came with the camera flash.

I am leaving my life, as I know it, in the middle of a memory. That’s what life is all about making memories, some of which are captured on film and many are less momentous but more important to your story. And I am virtually walking away from all of it and even though I know it is necessary and it may be the end to Hodge (who has been both harassing and stalking me for nearly three years now), it doesn’t make that concept any easier. It’s not about what you may be missing. That would have been the worst when you were in high school, the thought of missing out on something, anything that anyone else is doing. It’s about not getting to live your own life…I can’t just walk in the door and except sloppy dog kisses from Jax or Josh for that matter. I can’t just pick up the phone and ask my mom if she wants to come with on a Target run so we can buy things we don’t need. I can’t tag along with my dad on a random errand. I can’t go on road trips to Yankee Candle and Judie’s with my girl friends, or have dinner out with anyone. I can’t even attend my sweet goddaughter’s birthday. Work is an obvious can’t and I will feel left out of the loop there. Weddings are a definite no (which means there won’t be any fun photo booth pictures unless I can convince Josh we need one at home). So in many ways I am walking away from my life in the middle of a memory.


And I know I will be able to stay connected through facetime/skype and the phone and social media, but it’s not the same. And I will be a terrible hermit, especially because I don’t believe I have the right wardrobe for it. For some reason when I picture a hermit, I picture an aging male with a father time beard and canvas nightshirt with a walking stick. Funny that the wardrobe was the thing I don’t think I have in that scenario. (Steph may have been right years ago, my head IS a scary place). But regardless of the fact I am social, not town mayor social necessarily but social. Just ask my soon to be sister in law, Halley, who got to see first hand my social butterfly tendencies at the Cancer Center. I know everyone, they know me, and we enjoy each other’s company. And yes it may be an odd place to make friends, but nevertheless I did. I am someone who needs that, who thrives on interaction with others and the very thought of 365 days of comparable solitude doesn’t leave me very excited. I know it’s for the best, I know I’ll adjust but it still feels like I’m taking a time out.

Here is what I can say, always be present in your life because you don’t want to walk out in the middle of a memory – what if that memory is one that you will cherish until your old and grey?  What if that moment changes your life and you want to hang on to it as long as possible? Enjoy the moments of your life, sing loudly in the car, do the unexpected because there may come a time when you can’t. In two weeks, I won’t be able to live my normal life, so I will have to find ways to make transplant time memories. I’m guessing they will be interesting and will all include hospital masks (which I intend to decorate) and gloves. Even though I may be walking out in the middle of a memory in one way I’m walking into one in another. This experience will no doubt be the most challenging and rewarding of my life.