Tag Archives: Cancer

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.

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

#PODLife

Now that I have been here nearing a week, I am getting the lay of the land. And from what I can tell, in many ways it functions like college. On Day One you lug your luggage to admissions and obtain your room number and allow your luggage to be tagged. The difference is that as an adult we could afford valet parking, which gets us a little closer to the actual admissions area rather than doing the hike from the furthest parking garage with the rest of the newbies or commuters. Another bonus is that the admissions staff at the hospital takes your luggage to your designated living space, while you undergo your first activity. Maybe someone who went to a private college where this occurred wouldn’t see how this was anything special, but I went to UMASS and lived on the 22nd floor of a tower and my roommate and I only had one trip a piece for the elevator and about a zillion bags. So this time having my zillion bags brought up for me was like winning the door prize.

My first activity (putting in my Hickman line) ran over like a bad lecture about Student Living and I didn’t arrive to my room until the evening. So my bags were all jumbled in the corner of my cramped new space. I was too exhausted at that point to care, but it was oddly reminiscent of my corner room my freshman year. Freshman year, my roommate and I landed a corner room, one of the four worst rooms on the twenty second floor of the tower. The space was so small that we had to loft a bed and stack our desks so we didn’t have to climb over other furniture or each other. This room wasn’t that bad, but I definitely had to be acutely aware of my maneuverability. It had a similar view to my college dorm as well, both were of the building next door. The night nurse told me not to get too settled because I would probably move in a few days, which I was able to do. And my new room was amazing better than any z room UMASS had to offer. It was also the room I was shamelessly scoping out during my daily laps in the pod (instead of the quad). My day nurse (who is awesome) told me on Easter that my new room was ready and it had a surprise waiting in it and boy did it ever. My soon to be mother in law and pretty much all the nurses on the floor helped me haul my luggage three doors down to a room with a much nicer view and an even better 50 inch flat screen television. It was a donation from a community member and it circulates throughout the hospital. I’m glad to have it for my stay, it would have been seriously useful in college, especially when the Sox were on. Thanks to Adrienne, I unpacked and officially settled in to my new residence for the next month or so. The picture went up, drawers were stuffed, toiletries set up in my private bath (again something I wish I had in college). All in all, my spacious new digs were an added bonus.

Just like college, you essentially follow a schedule that you get credit for. The big difference is how these credits are calculated and used. One set is accumulated over four years for graduation the other over your stay for discharge. In a collegiate environment you get credits for grades, here you get credits for being an active patient. One who gets up and does laps in the pod (I try to do at least 30 minutes a day), one who eats the amounts preset by the dietitians, and drinks the desired amounts of fluid to avoid secondary issues. They credit the amount fluid you intake and the amount that is voided. I mean that literally. Every time you use the ladies, you pee into the hat and the amount is recorded. Not something I ever thought I’d discuss publicly or receive credits for. You also get points for mouth care, taking your meds, etc. All of this helps build your transcripts (patient history) but the blood work numbers will be the deciding factor on when you can be discharged. I like to think of them as the final.

As of right now, I get up around 5 and begin the mouth care regimen, wait for my vitals and morning meds, and then take a walk in the pod. It’s an easy phys ed credit. Walking for 20 minutes individually or dancing if you have your partner (Issac Victor Pole – I.V. Pole).

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After that I have someone tape up my hickman line with what is basically press and seal Glad wrap so I can shower. Showering is my absolute favorite part of the day, because you get some real privacy (unlike in college) and because you are free from the pole. I get dressed in one of my individually pre-packed outfits that is comprised of pants, a tank top, shirt and coordinating headscarf. Then I’m ready for the day, I find things to do to stay busy like crossword puzzle with Steph via speakerphone, talk and text to my family, chat with visitors, color, grade, draw, etc. I order room service, although the food quality is similar to the dining hall of most campuses. At night, I FaceTime with Josh and Jax and get bed ready. I’m usually in bed by 8:30.

I’ve had my chemo cocktails for the last five days in a row and I can say the drugs here are better than in college, mainly because they prevent you from the hangover that follows a night of partying. This morning I had full body radiation and feel like I laid out in the sun all day. I’m just as tired as if I had done that and laid out in the quad in the nice spring weather. So today, I’ll get some rest because tomorrow is my the big day. DAY O, when I get my new immune system! And then I’ll be twenty, and ready to relive my college days?