Tag Archives: Hodgkins Lymphoma

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.

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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.

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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.

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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

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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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.

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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.

My Someday Love

So there I was tissues in hand preparing to cry through an episode of This is Us (my new favorite show) when I was completely derailed by Josh. Most evenings he comes home from work, puts his bag down on the old leather recliner, that once belonged to his Grandpa John, in the corner of our living room and walks over kisses me hello and goes about his business. On Tuesday March 7, he didn’t go about business as usual. Instead, he came in the door, dropped the bag onto the chair, walked toward me and dropped to one knee. Jax thought he should join him and got up off of the couch and got to the floor with ‘dad’. In that moment Josh asked me to marry him and spend our lives together. I immediately said yes!! and cried! He leaned in to kiss me and so did Jax, which made up the most perfect moment of my life. There we were…the three of us, as it should be. Josh slipped the most beautiful vintage engagement ring on my finger and said he couldn’t wait to spend our lives together and there it was…I knew I had found my Someday Love. The one that I had always hoped for.

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Josh always knew. He claimed I was the ‘one that got away’ in college and now I was his fiancee, making him a very lucky man. I have to say, I may not have known then but I know without a doubt now that I am the lucky one. Josh walked back into my life when most people really would have run in the other direction. And instead of bailing on any of the opportunities I gave him to in the two and a half years we have been back together, he just shrugs me off and says any time we have together is better than ever being apart. It’s hard to balance a relationship while having cancer. I have always struggled with the fact that I may be responsible for his  ultimate heartbreak and not by any choice of my own but at the hands of Hodge. Josh has always said it was too late for that, he was all in. And he is! He even asked my father for permission, which meant a lot to me. I am very close to my parents and that tradition was one I had hoped to have as part of our love story.

Since Tuesday, things have been a whirlwind of excitement and congratulatory statements. My mom and Nancy arrived in our kitchen in their pajamas the night of the engagement and sang “Going to the chapel”. Their excitement made taco engagement night even better! Josh’s parents were equally excited and couldn’t wait to see us in person over the weekend. I was overjoyed to be able to call Josh’s sister and her wife my sisters in law. Halley (Josh’s sister’s wife and I had bonded instantly and became fast friends.) We called Josh’s ninety four year old grandmother because we just couldn’t wait to tell her the happy news. I called Steph right away, but I had suspected she already knew and she did. She had been colluding with Josh to help him find the perfect ring. I am lucky to have Steph, despite that I drive her crazy, she is that friend. The one that can help your fiancee out and keep the secret (no matter how hard I tried to get her to tell me), the one that you share your secret pintrest boards and she is suddenly heart happy that you have a secret princess/ hopeless romantic side that you have been denying for years. Now I can look forward to planning our wedding in two years. I have plenty of time during my transplant recovery period to think about it (and a fancy new wedding planner thanks to Sarah and Halley to plan it in).

I am so excited to start this new chapter of my life with Josh and Jax. March 7 has now changed my life instantaneously twice. Once with my cancer diagnosis and now with my engagement. Both prove how important it is to cherish the moments of your life that matter! ❤

Countdown to Major Tom

So I have never really been a David Bowie fan, although that may be because I really don’t know much that he has done other than the movie Labyrinth and even than my recollection is fuzzy. This should be evident considering I genuinely believed that the name of the song or at the very least the lyrics contained the phrase Countdown to Major Tom. Although he was beloved by many as shown by the out pouring of emotion from his fans after his recent passing. However, the song Space Oddity came to mind, not because this post has anything to do with the moon landing that occurred in 1969 or A Space Odyssey, the movie that came out in 1968. Nor does it have to do with drugs, which some speculate the song has some connection to or at least not those drugs. The title or at least what I initially thought was the title seemed fitting for this post because I am counting down to Major Tom or my anonymous 9/10 donor match who I have now assigned this awesome alias.

I have exactly forty three days until the week of April 9th, which is my tentative week of check in for my allogenic stem cell transplant. Now I have to tell you, I envision something from outer space when I think about the actual medical procedure that is a transplant. I’m pretty certain I won’t attempt to wear tin foil on my head to ward off mind control as these new alien cells embark upon my body, through what is pretty much a blood transfusion. After that, what they in the medical profession call Day 0, I have no idea what to expect which in  my world is terrifying. I am a planner. I plan for everything, even things I can’t really plan for. My various Pintrest boards (public and private) can attest that as can my Erin Condren planner obsession. At this point I have a various personal planners, a teacher planner, and now a transplant planner. I have been creating lists of doctors and medications, appointments, and people to contact, and paper work to file, and to do lists to accomplish all of those things. This makes me sound like an obsessive compulsive Type A personality and that might not be untrue. What may be more true is my love of stationary, planners, and paper. And yes I know that is insane, but there are others like me who get oddly excited when Erin Condren comes out with a seasonal box or your new address labels have finally arrived in the mail. So back to my original point before my planner love took me off on a tangent, I have a need to plan. I have forty three days to plan and then the abyss for at least the incubation period while Major Tom’s cells take hold.

I never anticipated how much planning could really be involved. I had to get all of my legal affairs in order. And I do want to say that there is nothing worse than having to talk to your parents and your boyfriend about your last wishes at thirty four or having to ask your best friend to be your Healthcare proxy because you know the previous mentioned parties couldn’t possibly respect your wishes (not that it will be any easier for her). I have to figure out the logistics of how to leave my teaching career for 365 days (worst case scenario) after thirteen years and not worry about my current classes, my future classes, money, etc. I have this need to plan all of it, make videos for the days I’ll miss before my AP  kids have to take their exam, write their letters for the day of, all the little things that I want to make sure they don’t miss out on. It’s not just school. I want to see as many people, sneak in as many road trips, and spend time with the people who have made my life so beautiful and there are only so many weekends in forty three days (because after that, I can only see them as ninja wearing hospital masked faces for a very long time). It’s a lot to take in. All while prepping my house for transplant, redoing our mildew ridden bathroom and cleaning out… well everything. And I can’t forget packing for my 100 day stay in Boston while the transplant process takes place. Did I mention continuing another cycle of chemo, dealing with a slew of other medical related appointments and working and my actual everyday life. It’s a little overwhelming (and the transplant piece is in itself is the same and terrifying and exciting). I may need a planner for my planner as I countdown to Major Tom.

 

On the Rocks…

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

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

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