Tag Archives: Cancer

Coward

“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.

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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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Summer of Porches

I’ve been on hiatus, enjoying my summer of porches. I’ve always sort of fantasized about sitting in an oversized rocker on a wide front porch with large white columns in the foreground, sipping mint juleps. I may even go so far as to envision myself wearing a southern dress and floppy sun hat. What, am I the only one who has a romanticized Gone with the Wind view of the porch? My summer of porches slightly pales in comparison of this grandiose view, but the action is far better.

I lucked out because my transplant was timed perfectly to enjoy the majestic views of the mountain and summer weather of the Berkshires (minus the rainy days and odd forty degree mornings). So the two out of seven days are phenomenal. All joking aside having my transplant in the spring allows me the opportunity to be out in the world or at least on a few porches to be exact, otherwise I would be trapped inside. I have frequented a number of fabulous porches and a makeshift patio of sorts (mine). I spend my days under the canopy photographing my birds, reading books for pleasure and work, making my way through my magazine subscriptions of which I have more than I should admit to, and visiting with friends. Just last weekend my friend Tristanne and I set up shop out there to work on wedding plans, which is both fun and completely overwhelming. Thank god I have two years to plan appropriately. I have to admit I may be a Pintrest addict who has forty wedding dresses pinned to their board and an equal number of ideas that may or may not suit our venue. By the time my planning period is over, I will definitely need an intervention of sorts. Regardless I will enjoy another month (hopefully more) of hanging out on my patio.

I also frequented a fabulous multi level porch at my friend Karen’s where we have party on the porch once (sometimes) more during the summer and fall. It has been a tradition for a number of years now and I’m glad that despite my inability to really be out in the world, I can still do things like this. I was excited to take the long way and walk up the outside steps to the second tiered deck, lined with a fun potted garden and hanging bird feeders that have frequent visitors. That wasn’t even the best part, the best part was hearing Donna’s booming voice and air hugs from everyone, except Karen who shares my hugging philosophy. I’m lucky to have these amazing women in my life, who are my coworkers and friends. I talk to Karen everyday, which makes planning party on the porches even more fun. And on those porch days we laugh uncontrollably (especially when trying to get a group selfie), eat well, and share our latest adventures. It was nice to be with my people, especially since I will miss the next six months of breakfasts and lunches while they are back at work and I am still at home.

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I also had the opportunity to frequent a new porch. Steph and her husband just redid their front porch in a beautiful reddish stain with black flooring and spindles. They really did a great job, adding lattice work and solar accents. They also have fabulous wooden rockers where you can relax and chat. I haven’t had a ton of time to spend at their still new to me home, no like their old one that used to have a back deck. I was sad that I would have to miss our annual trip to lake where much of the time is spent on the camper patio doing crosswords, playing board games, and eating Ruffle chips and French onion dips. It was actually one of the things I was most disappointed about having to skip. It’s our time to catch up without work, to read young adult fiction simultaneously like we have our own secret book club, and just really catch up.  So now we have to do that from the comfort of our porches/patios.

Friday marked my day 100, which is a really big deal in the transplant world. It means that I made it through the first three months unscathed, no acute gvh, infections, or other complications. It doesn’t mean those things can’t occur it just means that they may be less likely in some cases and or less severe in others. That doesn’t mean I’m out of the woods yet, as all of my medical team likes to remind me. Things can definitely go awry but they feel confident that I’m on the right track. I get to taper off the anti-rejection meds which might stir up some gvh but they prepare for that. My appointments are spaced out to biweekly locally and monthly in Boston. I can order take out from reputable places, which is very exciting. I love knowing that there is an option not to cook my own meals. I’m planning on waiting though till our anniversary dinner in a week and a half. Aside from that things remain the same, no public places. So I will continue to enjoy my summer of porches!

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Trending

I used to think the term trending was reserved for financiers analyzing stocks and other things I know nothing about. And then several years ago, trending became a social media term where something or someone is posted about frequently in a short period of time. That something might be a spider the size of a small dog in Australia or that someone is the celebrity of the week. Tv shows often end up trending and I have been watching one that was trending five years ago, what can I say I’m generally behind the times. But I shamelessly have been watching Gossip Girl….again, on my house arrest, which usually gets an eye roll from Josh and well just about anyone over the age of twenty. But I like the trends- the designer clothes and handbags and socialite parties. While I may never appear on page 6, a girl on house arrest can dream.

But for now, I have my own trends. I’m bringing back the head scarf and beanie, much needed accessories to keep my fabulously bald head warm. Paired with some long dangly earrings and it’s definitely a look. In terms of jewelry, I’m also donning my new Medic Alert bracelet. Fancy, I know. But actually, it is relative fancy and not at all what I pictured which was a flashing bracelet that had the “I’ve fallen and I can’t get up alarm on it”. Instead it is a tasteful sterling silver triple chain bracelet that identifies me as someone who requires irradiated blood, has had a bone marrow transplant, and sports a titanium mediport. In addition to these accessories, I’m also trying out brow liner. A bold move for me, but a necessity because they awkwardly fade even though they don’t totally fall out. So those are pretty much the tips I’ve picked up from Gossip Girl this week.

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In other trends, my counts are still trending up. After my two latest follow up appointments my numbers are slowly climbing. My white blood cell count is 1.7 (keeping me neutropenic and at a risk for infection, which is expected for a few more months), my reds are stable yet low (continually making me anemic, again to be expected), and surprisingly my platelet count has jumped nearly 80%. I have been told that all of this is good news and that engraftment has clearly taken place and the rest should normalize in due time. Until then I have to follow the transplant rules for my first 100 days, which is a post all of it’s own. So for now, I’ll finish watching Gossip Girl and create my dream closet on Pintrest for when I can get back to my normal life in 340 days (and yes I am counting and sort of joking). And dare I say, things for me are definitely trending up.

 

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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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  mind. I, however, do this process in reverse, only when I leave the sanctity of my room do I need gloves and mask. It is also then that I get to see the actual faces of the nurses I interact with on a daily basis. So far I have enjoyed visit from my fiancee, my parents, my future mother in law, and my friend Karen. Despite the process, the visiting part is the same. We talk we laugh, etc. Except visitors cannot have any food or drink in the room, because that would mean removing the mask and they have to leave and repeat the prep process if they need the restroom. The only awkward part is the goodbyes, especially with Josh. We can’t hug or anything. It’s like the end of a first date, when you aren’t sure of what to do next.

When I return home, visitors will have to undergo a similar gloves and mask process to visit me and I will have to do the same to leave my environment. So gone are the days of open door policy and now visitors have to follow the visitation rights.