It Takes a Village…

I have heard the expression “it takes a village to raise a child” countless times, probably more so as a result of my occupation. It is true in the sense that as a teacher you partake in the raising of children and often wear many ‘hats’ in order to do so. But aside from acknowledging that sentiment, I never really gave it much thought until recently. The second I was diagnosed with cancer, a village magically appeared – rising from the abyss and settling in around me (or something to that effect). This village consists of my parents, Jax (my sweet Golden Retriever), family, friends, next door neighbors, colleagues, doctors, nurses, Hillcresters (people at the cancer center), former and current students, and members of my community.

If one were to conduct an anthropological study, each villager would assume a unique role in the overall well being of the ‘child’ – in this case me, the cancer patient. Anthropologists study kinship which is the relationship between people based on family, marriage, or other cultural arrangements. These studies conclude that in many cultures children are not raised by their parents alone, but that the community in which the family resides also takes some responsibility for that child’s upbringing. However in the modern era, the extended family tradition was replaced by the nuclear family model, leaving parents the sole responsibility for their dependent children. Illness changes that regardless of the age of the ailing party. People graciously rally and offer support for the sick individual as well as the frantic immediate family and thus a village is born. 

Admittedly, this village model has taken some getting used to for me. As a very independent young adult (early thirties), it has been trying at times to accept the help and sometimes watchful eye of my parents. I have a very close relationship with both of my parents and have always spent a considerable amount of time with them. My mom and I sort of have that Lorelei and Rory Gilmore Girls thing happening. For example when I moved off on my own, we created a Friday night dinner and a movie night to ensure that we always had one night a week to really catch up. And my dad and I are very similar so we sometimes butt heads, but are still very close. As an only child, I have always had the full attention of my parents and have always been their sole focus. I think in some ways that may have been the result of my shocking entry into the world, two months early, causing them to fear for my life almost immediately. They had to be watchful over the incubator for nearly two months after I was born. My mom claims that she bargained with God to let me live and she would never ask for anything again. And well it worked with the help of modern medicine and apparently it will have to work again as I fight my Hodgkin’s Lymphoma nearly 32 years later on the dot (my first treatment was the week of my birthday).  Since my treatment started my parents have been there every step of the way- doctors’ appointments, treatments, etc. My mom stays with me during treatment, for me and for her own peace of mind. Once we got into the routine of the regularly scheduled programming it was easy, but now with my new refractory status, intense treatment and soon to be followed transplant, everything seems magnified. My mom has to move in with me for the 100 days and while I love being with her I also love my independence. And I think as a young adult this is the hardest part. You have to accept the fact that to your parents you are a child, their child. So we all try to compromise some and it works. After all, they are the center and foundation of my village.

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My village is also made up of my family, both blood related and life related. My grandparents, aunt, uncle, and cousin have been incredibly supportive. In some ways, this has been a blessing because we all make more of a concentrated effort to see one another. I now have monthly luncheons with my aunt and cousin, when before it seemed we only got together on birthdays or holidays. My second mom, Nancy, has also been a Godsend throughout this. She is a constant support for both myself and my mom. She too has been with me since day one, she and my mom have been best friends for over 50 years, so she is most definitely part of my family and so is her son. He is the closest thing to a brother that I’ll ever have and I am his daughter’s godmother, an honor I cannot even begin to explain. I just love that little girl to pieces. I love spending time with my ‘brother’ and his amazing wife. This experience has led us to also spend more time together. In many ways having cancer has reset my priorities, I work less and spend more time with my family and friends. I have to admit that I think I enjoy my life now more than I ever have.

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My best friend Steph has also been an instrumental member of my village, she has been my support system through all of it. I consider her family as well. When I was diagnosed, she ran the gamut of emotions that I did. After her google search on what to do when your best friend has cancer, she vowed never to treat me differently or force me to take walks in nature (which the website) and everyone else suggested. She stayed true to her word. We do what we always have and have tons of fun in the process. Every once in awhile sh” gets real when we have heavy conversations about the reality of all of this, but it’s nice to have that person to go to with the heavy stuff too. In some ways, I feel worse for her because everyone we knows asks her how I am or what I need. Takes some of the pressure off of me, but she ends up having to field a lot of questions and navigate the offerings of support. I greatly appreciate her taking one for the team (or our really small gang of two).

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My other friends have been equally amazing in a variety of ways. Tammy and I keep our monthly get togethers, which we started one New Years several years ago. She is also my fashion consultant. My friend Jaime, both friend and colleague have fabulous dinner dates. Matt sporadically pops in to harass me as he has done since I was 13. My high school and college friends have been awesome and offer unconditional support anytime and all the time. We go to painting parties, have kitchen table talks, and catch up for old time sake. Some of my high school friends have taken my diagnosis harder than others because back in September we lost one of our closest friends (he was more like an overprotective brother to me) to Stage 4 Melanoma. That unbearable loss led some of us to try harder to reconnect and stay connected and with my diagnosis too, it feels even more imperative that we do so. I have to admit that having all of these people in my corner has helped me stay positive throughout. 

 

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My colleagues and administration at school have been wonderful in supporting me in whatever I need. I couldn’t ask for a better school community to be a part of. I am fortunate in so many ways. You also realize the impact you have had on your students over the years. Some of my former students check in frequently over coffee, dinner, or skype (now that they are all in college) and my current students ask how I’m doing when they see me. These relationships have also been a motivating force behind staying positive. 

The part of the village that one never expects is your team of doctors and nurses and other personnel. Prior to this experience, I liked my doctors but not enough to commit to seeing them weekly. Z changed all that. As my oncologist, he has to see me and treat me, but he is not forced to invest in me personally. But he is invested and he does this with all of his patients. He takes an interest in truly getting to know you. He even reads this blog and comments on my fashion sense and just randomly checks in. I knew he was part of my village without a doubt when I saw him in attendance at a memorial race for the friend of mine that passed away in September. All I can say is he really shows up and that is so important! He isn’t the only one, the oncology and IV nurses I have met are equally as incredible. In many ways they have become my actual friends. Some on facebook, some via texting and phone calls, others just when I see them. They know about your life and you about theirs. They cheer when your blood counts are good and they are just as disappointed when things go awry. Julie may have been more upset about my refractory status and stem cell plan than I was. I can’t even tell you how much that means to me that I feel so comfortable with all of them and know that having them in my village gets me through this. And the doormen who claim I make their day with my smile also make mine. It’s the little things. 

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My community overall has offered support and words of encouragement that are appreciated more than they know! 

And lastly one of the most important members of my village is my Golden, Jax. I got Jax three years ago as a way to curb my workaholic mentality. He is my first dog and my first real commitment. For the most part it is just he and I in the house, so we have to take care of each other. I admittedly was more worried when I thought Jax had a cancerous tumor recently than I was about my own cancer status. Luckily his was a rare benign tumor, thankfully. He is like my child and to my parents a grandchild. So I can’t even express how thankful I was when the stem cell transplant coordinator told me I could keep him in the house during my 100 days of house arrest. He may not be the type of dog that picks up on the fact that I am sick, but in many ways his energy makes me better. So I’m glad to have him running around in my village. 

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From anthropological stand point, my village is pretty impressive and has certainly helped me get this far!! So thank you villagers! 

 

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Do Not Pass Go. Do Not Collect $200!

You know that phrase “Do not pass Go. Do not collect $200”? That is exactly what I heard when Z called to tell me that my latest test confirmed I still Hodgkin’s Lymphoma despite my treatment. A few days earlier I went under the knife for a second time to have two pesky inflamed nodes removed from my neck area, which had a 50/50 chance of being cancerous again. Z was hopeful that the lymph nodes were angry about something other than cancer, because it was rare to be resistant to treatment. Being the realist that I am, I hoped for the best but prepared for what I was pretty sure the results would be: cancer again. My thoracic surgeon gave my parents the unofficial results of cancer right after the biopsy, so needless to say I didn’t bat an eyelash (cause I still had them) when I woke up and my parents told me. So now I have a larger neck scar, am down two more lymph nodes, and still have Hodgkin’s – so it certainly looked like the chance card I just picked up said “Do not pass Go. Do not collect $200”! 

That particular chance card is often accompanied by the phrase ‘go directly to jail’. And well in some respect the universe just put me in that position. My newly defined refractory status (a person who does not respond to first line treatment or induction failure) lead me down a path of appointments and decisions all ending up at the same location metaphorical jail. I went to Boston, so Doctor J could explain my ‘sentence’. She explained that I would need intensive chemotherapy and an auto stem cell transplant (solitary confinement), totaling a three week hospital stay followed by 100 days of house arrest (isolation period to protect immune system). So like I said ‘jail time’. Doctor J commented that she was surprised to see me smiling despite my sentence, but truly who wouldn’t do time if the end result was a cancer free life. Plus I was a little excited to know that my ‘cell’ could be decorated and I would not have to don the pin striped johnny. All in all my sentence, while harsh, still seemed doable. 

My sentencing doesn’t officially begin until October, but I have a lot to do between then and now. After Doctor J, reassured me that I’d be a hit in the joint thanks to my attitude, I went back to Z for me pre-sentencing appointments. And once again my calendar was full of prep work – blood tests, another echo, chemo school 2, dental appointments and more. So while I didn’t get to ‘pass Go’ and was not fortunate enough to ‘advance to Broadway’ or ‘take a ride on the Reading’ and I definitely ended up paying $200, I do get a ‘chance’ to still beat this thing and like most Monopoly games it’s going to  take a while longer to win. 

Statistical Anomaly

I should preface this by saying I hate math and nor have I ever been very good at it. The only type of math I have ever excelled in was percentages and that has more to do with my shopping habit than anything else. My basic understanding of percentages and statistical information had little to no bearing on my ability to fully grasp the array of medical data associated with cancer, more specifically Hodgkins Lymphoma. I knew in the beginning that I should pay virtually no attention to these statics, because ultimately every case is unique and more importantly I often find that I am an anomaly. 

Case in point, at the time of my biopsies (pre diagnosis) I was told that there was only a 5% chance that I had anything other than Sarcoid. Well that 5% chance ranked me among the 0.2% of men and women diagnosed with Hodgkin’s Lymphoma in their lifetime. Just so we’re clear, 2.7 out of 100,000 people are diagnosed, which equates to roughly a little over 9,000 new cases each year. 31% of those cases are people between the ages of 24-34 and a slight majority of them are men. Hodgkin’s Lymphoma is extremely rare and is ranked 23 among common cancers prevalent in the US and Europe. So talk about odds, I am 1 of the 9,190 people in 2014 diagnosed with this form of cancer. While Hodgkin’s is considered the “good kind” of cancer, if there is such a thing, that is usually cured by the front line of treatment which is generally ABVD. In terms of percentages that means that 80-90% of people are cured by this first line of therapy. Those numbers are outstanding and reassuring for most, considering so few cancers have similar success rates. I unfortunately discovered, after 4 cycles (8 treatments) of ABVD, that I am one of the rare 10-20% who do not respond to front line chemotherapy efforts. My early PET (after 2 cycles) scan showed a 98% response to treatment, meaning that the chemo had successfully killed my 4 inch tumor in my chest and the few other nodules in that area as well as the majority of the sites impacted in my neck. However, my mid PET (after 4 cycles) showed a slight uptake in one section of my neck that was initially there, but disappeared in the early version; which ultimately meant that ABVD was only partially working and would not keep my Hodgkins at bay. This made me refractory, one of the few who need a different modality of treatment. And suddenly Hodgkin’s didn’t quite seem so “good” to me.   

As one of the lucky 10% percent who would have to undergo more rigorous treatment, I had to regroup and develop a new game plan for my minority status. I was already abnormal in the sense that I had Hodgkin’s in the first place, I was female, and that I had very little side effects from chemo the first time. While my hair thinned early on and I chose to shave it, it actually grew during chemo. The Red Devil (Adriamyacin) never managed to take out my brows or lashes. I never once got sick with treatment, while I never felt good I never really felt bad either. I am one of the 33% who can taste Saline when it is administered through my port. And apparently my happy disposition is rare to many too, who often comment on how my attitude is so remarkable. While I learned to accept all of my other rarities, this refractory statistic was bit more difficult. It was really the first time throughout this entire experience where I felt discouraged and truthfully crushing disappointment. So I took the weekend to shake it off and prepare for my next steps, which include salvage chemotherapy (ICE), high dose chemo (BEAM) and an autologous stem cell transplant (CRAZY).

So here I am a statistical anomaly, who doesn’t plan on paying attention to any of the statistics as I move through this process, because clearly they rarely apply to me. And to be honest, I still hate math. Although I do occasionally wonder if with my odds I should try playing the lottery!  

My Not So Private (Cancer) Status

I’m a relatively private person, not one to air their dirty laundry, so to speak, on social media or to the general public for that matter. In fact it has always been a running joke among my students; I won’t reveal anything about myself so they speculate. For instance, one class, that has since graduated, decided that if I wouldn’t tell them about my life they would instead tell me what they assumed or could conjure up; which was a relationship with a dentist (apparently I had too many dental visits one year and it seemed suspect), who enjoyed outdoor activities and drove a sweet car. They called him Roger and even gave me birthday flowers one year from my fictional dentist boyfriend Roger. Clearly my students had far too much time on their hands, but case in point I never thought it necessary to inform the masses about my personal life – to my students or anyone else for that matter. But the news of my cancer quickly became public once I told my students and even more so once I had to shave my head.

Once hair becomes optional it becomes harder to blend in with the crowd. By optional I mean I wear my wig on special occasions, when no scarves match my outfit, I want to feel normal, or am around my sweet goddaughter who seems a little reluctant to come see me in a scarf. Aside from those days, I pretty much rock the scarf. Sarah, an IV nurse from my local hospital, said it all worked out because otherwise how would I have ever known I was an attractive scarf chick. (Definitely a silver lining). I love the scarves and have fun finding new ways to tie them and am excited every time I add a new scarf to the collection, but they do draw attention. Even though no one comments, people look at you differently; sometimes sympathetically and sometimes as if you have a horrible sense of style and didn’t realize gypsy wasn’t a style. Small children move a little closer to their parents when they see you and some even point or ask their moms why that lady looks funny. I’m always more interested in the response of the parents, who explain that it could be a religious preference, a style choice, or possibly that I am sick. Either way, what I am is noticeable. 

At school, some students (who never had me or were not my actual students) were somehow offended my new look. They saw my scarf wearing as a violation of the rules and felt that it was unfair. Some were vocal about it to other staff members, who were appalled by the lack of empathy displayed by these teenagers. Some of these students immediately felt bad after being told that I was wearing the scarf as a result of my recent cancer status but others still felt as though it should not be allowed. It didn’t stop me from showing up to work everyday and doing my job as I had been for the last eight years. And hopefully my students and those in the building were able to gain some perspective. I allowed the students to ask questions if they had them in hopes that it could generate understanding or provide a teachable moment. One girl was most curious by the very visible tube in my neck that connected to my mediport. I explained how it worked and she said “I would rather die than have a tube under your skin that people could see” and very factually I replied “and you would then” and explained that sometimes you have to do things in life that you may not want to, but they have a much greater purpose.

 I think the visible elements or public views of cancer are what people dwell on – the hair loss, the scars, the paleness – but in reality those are the things that matter least. So what if the world knows you have cancer, what is important is how you react to having cancer. So in some ways I was okay with my public cancer status because I wanted others to see how I chose to handle it. I’ll keep wearing my scarves and let my biopsy scars serve as reminder of how hard you have to fight. My modeling career might be over but my life isn’t and hopefully my very public attitude about cancer might change at least one person’s private view about it!

Regularly Scheduled Programming

I have always been the type of person that liked a schedule of sorts. I like to be able to anticipate my day and know what I need to accomplish and in what time frame. Some might refer to me as a micromanager, and I can’t really argue that. Micromanaging cancer is virtually impossible, so you have to choose your battles and take control over what you can. I opted to gain control by taking on my closet and accessories suited to my new look (somewhat gypsy-esque, so I’ve been told), getting informed (I always knew I should have come with a manual), and becoming acquainted with the full process of taking on my Hodgkin’s. But ultimately the rest isn’t up to me. All I have to do is show up and see what happens. In many ways it is a lot less stressful than one would think. The only decision you make regarding your treatment is whether you are actually going to have it or not. I choose to fight but I can fully comprehend those that feel that they fought long and hard enough and need a break. So for now I am a warrior of some kind on a regularly scheduled treatment program.

Because I like to know what to expect, I was happy to learn that my treatment days and doctors’ appointments and blood draws all pretty much looked the same. Even better that most of those days start with compliments from the fabulous valet/ doormen at the cancer center. I have to admit they are a major confidence booster. I find that I smile a little bit harder every time I see them, although oddly enough I pretty much smile all the time. You have to live each day to the fullest and why not enjoy all of it? After the doormen and I chat about life and theater and my smile, I go in to reception to check in. Where without fail, I am asked my birthday and given an id card with stickers that follow me on my day’s visit. Throughout the day I will be given a hospital bracelet that I usually forget to take off and asked my birthday at least a dozen more times. I actually ordered a t-shirt that has the date just to be funny. All of the people that work in the front offices as schedulers and registrars are amazing. They know you by name and you know them. We joke and comment on each other’s outfits. It is a truly comfortable atmosphere. 

I start off on the fourth floor with my Julie or Susan or Stacie or Brenda for a blood draw. One would assume with a mediport a blood draw would be easy, but not me. I usually have to turn into a contortionist to get a blood draw on the first try. Otherwise I usually deplete Julie’s stash of saline and heparin from the cart first thing. I prefer that not happen because I am one of the lucky one third that can actually taste the saline solution and I can tell you it does not taste good at all. Once the blood work is over and I have secured my chair in the corner window by leaving all of my personal belongings (it generally looks like I have packed for the week between my cooler, book bag and other not so necessary things), I get to go down stairs for a visit with the Doc. 

My Doc visit always starts off rough with the scale. I have never particularly been fond of the SCALE, it has always mocked my height and weight discrepancy. But alas it is what it is and my cancer has had no interference with my appetite, if anything the steroids and my need to mask the taste of drugs has led me to an even greater love of snacking on popcorn and Pops. So needless to say I’m happy when I step on the scale and there has been no change and so is my Doctor because that means I’m holding steady. After that you get the usual blood pressure cuff routine and temperature, followed by the wait time before Doctor Z graces you with his presence. I actually look forward to our witty banter. He thoroughly checks my lymph nodes and discusses what is next on tap for my treatment options and always assures me that we are on the right track.

After our exchange I am back upstairs to the Infusion room for the duration of the day, where I get to spend quality time with my mom or Steph or Nancy(my chemo buddies)  and most importantly my Julie.  Julie has been my oncology nurse from the get go and as a result we have become friends. So the afternoon is usually filled with laughs and smiles and funny stories. In addition to Julie, I get to spend quality time with Susan, who recently gave me and my group of girl friends the idea to have rotating dinner parties. And I always love good book suggestions from Stacey, who is also a John Green fan.

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And once the infusion is over I go home and come back within 24 hours to receive the dreaded neulasta shot. This is by far the worst part of treatment, the shot that increases your white blood cell count to fight off possible infections. It really just makes you feel like you were hit by a mack truck for a day or that you are an adolescent re – experiencing growing pains. Super fun! I really shouldn’t complain however because it is really the only side effect that I have experienced thus far, minus the hair loss. I usually stayed home the day after neulasta, but was able to go to work the day immediately following chemo and all the other days in between. 

So my regularly scheduled programed life was only interrupted by one Wednesday every other week, a shot on that Thursday after work, followed by a rest day and then on with the rigamarole of work and life. I had to show up on the in between Wednesday for routine blood work, but aside from that it was life as usual. 

Cancer – My Latest Accessory!

I imagine that everyone would say that their style has changed over the course of their life and perhaps even some of those styles return. I know that there has definitely been an upsurge of eighties style clothing on the racks as of late. Unfortunately.

I am a firm believer that style provides a certain insight into one’s personality. As children our parents select our style for us. It is often genderized, pink for girls and blue for boys. I look back at my childhood photos and take note of my matching dresses and hats. Somewhere around nine or ten, we develop our sense of style. Mine was definitely fluorescent. I loved bright colors and honestly still do, even if I don’t wear them all that frequently. My middle school years saw spurts of colored hair (hot pink or green), my favorite bright red Airwalks that I convinced my parents to drive all the way to Thorne’s Market in Northampton (an hour away) to buy, a lime green aviator jacket that went with absolutely nothing ,way too big corduroys and tie dyed tees, peasant shirts, and poorly put together outfits. My style evened out by sophomore year, but was somewhat boring. My closet mostly consisted of jeans and neutral tone sweaters. College was comprised of sweats and hoodies for the most part. I had on jeans a black turtle neck sweater and my leather jacket one fall day and my boyfriend at the time panicked thinking we must be going someplace fancy. It was that moment I realized my sweats needed to be taken out of the rotation. After college I obtained my first grown up job as a high school teacher and made it my mission to build a professional wardrobe on a limited budget. And I must admit I really do like to wear my money. Shopping for me is like channeling Carrie Bradshaw from Sex in the City minus the Jimmy Choos and Dolce due to a lack of funds. I pride myself on never duplicating outfits within a school year. I wear the pieces multiple times but never the same way. My students refer to me as somewhat of a fashionista. I’ll take that compliment any day.

My style drastically changed with my cancer, as did the rest of my life. But I had no intention of letting potential hair loss, pale skin and weight fluctuation take away my style. Instead I decided to embrace it and let it reflect my attitude about my recent diagnosis. My first step was to go with a short hair style, so that once my hair started falling out it would be far less drastic. I began my search for the perfect hair cut on Pintrest and found Jennifer Lawrence’s look to be daring but still feminine. So I went for it, certainly something I had never been brave enough to do before. I think it is funny now that I thought that was brave. Either way, I went to Ulta, sat in the chair, showed the stylist the picture, and said just go for it. She tried to talk me out of it at first but after I explained my situation she quickly decided it was a great idea. It took some getting used to and the people that had not yet been informed of my recent health problems just thought I was in need of a change and it looked great. I have to admit it might just have been my best hair cut ever.

I knew that my hair was slated to fall out after a few rounds of chemo so I promptly signed up for the Look Good Feel Better skin, hair, and make up workshop offered at MOMENTS HOUSE our local cancer support center. I actually received a private session because no one else showed up for the date I chose. So Steph (my BFF) and I got make up advice from a local stylist, I received a ton of amazing products donated by top Companies partnering with the American Cancer Society, tried on a few wigs (some of which were hilarious like an eighty hair band style), learned a few ways to tie head scarves, and overall had a fun evening. After that I felt pretty confident about how to apply make and when the time came if I needed to pencil in my eyebrows I would not be walking around with a permanently surprised set of brows or an angry scowl look.

True to form my hair started to shed shortly after my first cycle of ABVD (two treatments). It was worse then my Golden Retriever, between the two of us there was hair everywhere. I decided enough was enough and convinced Steph, the beauty school drop out (Just to clarify, Steph pursued cosmetology before finding her true calling and becoming an amazing High School History teacher.), to once again be my hair dresser. Only this time I didn’t need a trim, I wanted her to first shave it into a multi-colored mohawk just so I could say I once had a mohawk and then shave it entirely. She was far more nervous about it than I was. I thought of it as making the most of a difficult situation. Why not have fun with it? Steph was hesitant but was a trooper in the end. It was actually the first time she had ever done my hair that it was pain free for me at least. She of course ended up with hair and dye all over her hands, but I have to admit for thirty minutes I totally rocked my mohawk. Steph convinced me to post it to my facebook page to show people just how I was handling my Hodgkin’s Lymphoma diagnosis without giving the nitty gritty details. It was actually really freeing for me and nice to see the support of so many.

Once the mohawk was shaved off came the wig and head scarfs. I was fortunate enough to have grandparents that purchased a top of the line wig for me. I went to Hair Studio, where Frank swept me to a private room in the studio and had me try on wigs that he could custom alter to best suit me. I found a great wig, darker than my natural color, with a little bit of an edge that I just fell in love with. It many ways it looked better than my actual hair ever did and I wore it a lot at first, despite that I constantly got food in it because well I must just be a messy eater and that it was a little uncomfortable around the ears. It looked so natural that strangers and even my colleagues and students (who should have known better) thought it was real. So I’ll take that as a win.

But overtime, I felt like the head scarf was more of my every day style and I had purchased tons of them to match and properly accessorize every outfit. One of my eighth grade students even bought one for me, she said that they suited me and she was pretty sure the one she selected was my favorite color. And she was right, It was a beautiful ombre turquoise scarf that I just love for both the sentiment and the style. I watched you tube videos made by the amazing Karina Moreira for beauty tips and scarf tying. So I wear my scarves all different ways, but rest assured they match my outfit and jewelry. My oncologist and team of nurses as well as friends and family comment on my matching, especially because I am far too well dressed for chemo (so they think). I personally think feeling put together makes me feel both beautiful and ready to face anything. I actually joked to my friend Tammy that I had somehow morphed into the Blair Waldorf (Gossip Girl reference) of cancer patients and that my cancer was just my latest accessory!

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The Chair

If you were to play a word association game with the word chemotherapy it would most likely be paired with one of the following: toxic, nausea, hair loss, scary, confining, etc. It is similar to the association of cancer with death. The issue with these associations is that there is little to suggest anything different, thus creating a fear factor before ever actually experiencing it. I admittedly was no different. I pictured chemo like a scene from a poorly made drama. 

CUT TO: A poorly lit room, painted a putrid shade of yellow that gave everything a dingy appearance. Old school wooden folding chairs, the kind with the slightly cushioned seat and upper back section, were placed in a circle in the center of the room. The twelve occupants seated in the chairs stared blankly at the television, read silently, or talked in hushed tones as they shifted uncomfortably in their chairs. Many sipped coffee out of their paper cups with their free hand, while the other remained stationary and hooked up by IV to the pole that would slowly drip the cancer killing toxins. The nurses station was a single wooden desk off to the side pilled with a stack of paper and extra IVs. The nurses circulated the room checking on their patients periodically, both parties seemed distant and dismayed. 

Imagine my surprise when chemo looked absolutely nothing like the movie scene directed by my over active imagination. The infusion room is an entire floor of the hospital and seats thirty patients at a time. Each patient has a fancy recliner  fully equipped with massage. The deluxe model chairs were only part of the ambiance achieved in the infusion room. Each station also has a comfortable chair and ottoman for the family member, friend, or care giver that accompanies the patient. The rooms are open, but can easily be made private by simply pulling the curtains. Everyone has a window overlooking the beautiful well maintained gardens or landscaped grounds. And the natural light on the unit negates the buzz of fluorescent lights and low grade buzz of most hospitals. Each infusion patient also has free wireless access and their own personal mini flat screen television and dvd player. The infusion unit was designed to make everyone as comfortable as possible. If need be there are actual physical room isolated from the other stations for those patients that require additional privacy or other special considerations.

I personally prefer the corner room as I like to call it that overlooks the grounds (and construction on the new radiation oncology wing). Because I am a creature of habit, I actually once cut off an elderly woman walking in the direction of my chair. Clearly I have no shame! I’m usually in my chair from around 10:30 to 1:30, hooked up to my ‘stripper’ pole. Some of my chemo drugs are run through the IV drip the others are administered by hand by my Julie. I also have the pleasure of getting to know Susan, Stacey, and Tammy throughout the course of my day stay. All of the oncology nurses are AMAZING! They are personable, knowledgeable, insightful, and genuinely great to be around. I have developed a closer friendship with Julie because she was initially assigned to me and my chair and later because she’s awesome and we just connected. Julie has to don her highly fashionable blue dressing gown, gloves, and mask while injecting my chemo drugs into the IV that directly runs into my mediport. We generally joke about life, talk about family, friends, and guys, suggest restaurants and activities, and just converse like friends do over cocktails; only in this case the cocktail can be lethal. The day is full of laughs for me, the fabulous nurses, and my ‘guest’ which is usually my mom. I have to admit I enjoy the day and look forward to seeing everyone. I’ll be happy when we are making shopping plans rather than injecting chemo drugs, but until then I can honestly say it is nothing like I imagined. 

People act like my day of chemo is like going to the electric chair. Everyone wishes me luck or calls me later on that night to see how I made out. And I suppose unless you see it for yourself you may imagine a scene similar to the one I did only worse. After Steph came with me for treatment she understood what I meant when I said I thought of it as a good day. We played cards, joked with Julie and Susan, and overall enjoyed the few hours overlooking the freshly manicured grass. She tried to tell my coworkers that it was almost fun and they just stared at her wide eyed, much like they did me. I brought my second mom, Nancy, with me once as well for similar reasons – so she could see it and stop thinking I was being tortured. After our day of jokes, sharing pictures, eating popcorn and fruit salad, she too realized that she let her preconceived notions of cancer get the best of her. She was even offered a complimentary Reiki treatment that day. So, unless you go through it or accompany someone who is, people will look at you sympathetically on those days and wish you luck because to them the Chair is something out of a horror movie. 

Humor is necessary when battling Hodgkins Lymphoma at the ripe old age of 32