check-up days aren't really fun

I had intended to write the last entry of this blog on January 2^nd, the one-year anniversary of my last day of chemotherapy. As far back as November I’d been looking forward to January 2nd, by December I was brainstorming ideas for a party or a fancy dinner to commemorate it. That was the day that was supposed to end this blog journey, it was supposed to be a triumphant end. The one-year point would mark the moment that his changed from a fresh and raw pain to a memory of something that happened once, a long time ago. I wanted that, but it didn’t happen. 

I didn’t throw a party or have a fancy dinner or write an ending to this blog. It suddenly felt strange, “off” somehow, inappropriate to celebrate.  The more time and distance that I put between myself and the end of treatment, the less I feel like the prototypical spunky survivor.

It’s true I’ve spent a great deal of time, most of it documented on this blog, looking on the bright side of things. I wanted to be a good patient, a positive force, the kind of silver-linings cancer survivor that garners praise for being “motivational” and “an inspiration”. I still feel that way, most days, and I am really quite grateful that my positive attitude held strong when I most needed it to. But there are other days, lots of days, that I am not thankful for my experience or grateful for my good luck. I’m angry that I lost so much time, frustrated that I haven’t been to heal my shattered self-confidence, bitter, anxious, sad. When I do have a bad day, an angry-frustrated-bitter-day, I can usually figure out what it is that triggered it. I still get impossibly frustrated when my hair won’t do what I want it to and I don’t have the option of throwing it up into a ponytail.  I still don’t feel like my body is entirely my own.  I still get overwhelmingly anxious at my oncology check-ups.  I still have dreams where I’m not done with chemo. And I’m still really, really not OK with the fact that this happened to me

I guess it’s getting better. There are gradually less reminders around me, more days when I don’t think about cancer at all. The truth is, I’d love to throw a party to celebrate the end, but I am less and less sure when that day will come. For now, my cancer-story feels like annoying little shadow that follows me around, invisible to anyone else but me, and celebrating anything right now would feel fake, forced, hypocritical. It will happen someday, I hope, but not quite yet.

Goodbye.. part1

   Wow oh wow has this been a long time coming. I realize that last post I wrote was almost four months ago and I’ve been keeping you guys hanging this whole time. Apologies. Part of my reluctance in posting is due to the fact that I always intended for this post to be my final one. I created this blog to help me keep in touch with friends and document my experience while fighting cancer. I’m done with that now, so there’s really no more reason to keep this going. Still, goodbyes are sad and in some strange way I’m kind of reluctant to definitively close this chapter of my life. So I’ll make you guys a deal: there will be no frequent posting, but if something comes up that is cancer-related and crucial to my life I will not hesitate to dust off the keyboard and tell you all about it.  (This is the “we can still be friends” of blog-breakups.) Ok let’s get to the important stuff…

My home/prison for the next 24 months

   I GOT IN TO DUKE!!!!! I found out less than a week after I went for my interview, so I’ve already gotten to enjoy this feeling for a few months. Honestly, I think I was starting to take it for granted a bit until I re-read my last post and was reminded of how much it means to me. I’ll be in Durham, North Carolina for a pretty intense two-year program, but at the end of it I’ll be in my dream job. How awesome is that?!? It just gets better: one of my good friends from work got into the same program, so I’ll get to be roomies with Ms.Dana Riker. I bet this won’t really totally sink in ‘till I’m packing up a U-Haul and driving south but it’s gotta be the second best news I’ve received in the last few months. Why second best? Well…

    BECAUSE THE BEST NEWS IS THAT I AM CANCER-FREE AND IN REMISSION!!!! Yes, I realize that’s the second paragraph in a row to start with all caps but you can just go ahead and shut up about that because I am CANCER-FREE and it’s simply impossible to write in lowercase :-D Oh happy day!!! Happy faces galore!!! I’m in complete remission, which means that there are absolutely no signs or symptoms to indicate that there is any more cancer in my body. Nobody can ever guarantee that I don’t have a few rogue cancer cells still floating around somewhere, so I’ll keep going to my oncology checkups every few months for the next couple of years… and then every six months for a few years after that, and then yearly for the rest of my long, healthy, happy, cancer-free life :-)

This is not the actual photo of my friends and me celebrating. That photo involved shots and scrubs and this is way prettier.

    How do I even start to explain to you what it feels like to be done with this?  I’m not sure that I can even identify to myself how I feel about it. Can you believe it hasn’t even been one year? On September 21^st I went for a seemingly normal visit with my doctor, and on April 12^th I was officially in remission.  Six and half months for my life to be turned upside-down, for everything I took for granted to be knocked senseless, for me to hit lows I was completely unprepared for and then rocket right back up to the highest highs.  I know I’m being dramatic but c’mon, this WAS dramatic!!!!  It’s shaken me up quite a bit, and I don’t think I’m settled yet. There are some big questions up in the air (will I be able to have kids?) but the overwhelming sensation is just absolute joy.  A little while ago I wrote about how having cancer gives you the freedom to face the rest of life absolutely unafraid. This is still true, but I guess I never realized how it also gives you the freedom to be absolutely happy. I don’t have to second-guess good things that come my way in life, or be restrained in my enjoyment of life’s small pleasures, or have any doubts whatsoever about my worth as a person.  I spent 204 days in pain, fighting, suffering, crying, and believe me I am DONE with that. I have EARNED my happiness now and I am going to enjoy the hell out of it!!!!!!!  I plan to spend my summer having an absolutely fabulous time with my friends, partying, laughing, dancing, drinking, and listening to too many Kelly Clarkson-esque inspirational power pop-ballads.

   Well it turns out there is more that I still have to say, but it’s late and I don’t want to bore you.  I absolutely promise to finish this tomorrow, and the upside is that I don’t have to say goodbye QUITE yet :-)

PA Updates

   Hello everyone!!! Let’s start off with standard apologies: I’m so sorry I haven’t written anything on here for the last couple of weeks! I guess I got excited about being done with chemo and I just forget that there is still a lot going on with my recovery. Tomorrow I’ll write about how I’m doing physically, but today I want to talk about what’s most on my mind at the moment…. PA school!

    Right now I’m at a really uncertain juncture in the application process. Out of the nine physician assistant programs that I applied to, I got called back to interviews at five of them, but could only go to four because of my chemo schedule (we won’t mention the evil, evil school that wouldn’t let me reschedule my interview). So I interviewed at Cornell (didn’t like it, thought I did OK) and Northeastern (absolutely LOVED it, thought I did amazing) and I got waitlisted at BOTH of them! This is pretty disheartening… On one hand getting waitlisted isn’t an outright “no”, at least they liked me enough to consider me for the program. On the other hand, it totally undermines my confidence because I have no idea of gauging the result of my interviews! I thought I was a perfect fit for Northeastern and my interviews were engaging, easy, informative… but I still haven’t gotten in yet. Sad face.

   So I have two more possibilities in the pipeline. I interviewed at George Washington University last Saturday, and I thought it went okay. The program is good, but the interviews were a bit awkward. They ask questions like “when have you been most disappointed in yourself” and “tell us about a  time that you have been under a lot of stress”. I was tempted to answer “right now” to both of those, just to see if the interviewers had a sense of humor at all (I got the impression that they really didn’t!).

   MOST IMPORTANTLY, I have an interview at Duke this Tuesday. For those of you that don’t know, Duke is my top choice school. It’s my dream. I can’t believe that I even got invited to interview there, and I am beyond excited to visit. It’s so nerve-wracking though! I haven’t had a single acceptance to any other school, so I really can’t expect things to go differently at Duke, but I have SUCH high hopes for it that I can’t help but let myself get a little carried away with how awesome it would be if I actually got in.

   Nothing is certain right now. I’m waiting to hear back from GWU, and we’ll see how things go at Duke. Within the next two or three weeks I should know if I got in anywhere at all. It would be a huge bummer for me if I didn’t manage to get accepted into any school that I applied to (I mean 0 for 9? C’mon!), but it’ll just mean I’ll have to do this whole process again next year and hope for better luck. I’m trying not to stress out about it, but this is a pretty crazy time. I just want to know what’s going to happen!!!

Good News

    So remember those annoying little nodules that showed up on my lung CT a few days ago? Well, they are very very probably NOT cancer or dangerous to me in any way. Yay!!! My doctors went through and looked at all my old chest x-rays, and it turns out my lungs look perfectly clear in an x-ray done immediately before my surgery, and then these mysteriously nodules appear in an x-ray done nine hours later, after my surgery. Since there’s really no way that cancer or an infection could suddenly appear in the space of nine hours, it seems most likely that it’s some sort of foreign matter or debris that got introduced into my lungs on accident when I was intubated. I’ll still get re-scanned in 3 months to make absolutely sure that they’re not getting bigger or anything, but at least that’s one less thing I have to worry about this weekend. Hooray for good news!

All DONE!!!

     It’s official; I had my last day of chemotherapy on Tuesday!!!! This is definitely a big milestone. Remember nine weeks ago when I was first starting this thing and I was nervous about going in for my first day? I really can’t believe it’s been over two months and that I actually finished this without anything going seriously wrong. I’ve had a lot of bad days, I lost my hair, I’ve changed so much physically… but from now on I can just look forward to improving little by little every day. I must say, overall my experience at Beth Israel has been fantastic. My chemo nurses even got me this cute little pin to celebrate my last day of chemo. Maybe I’ll be lucky and it’ll help make it snow (I love the snow!). 

    Of course, it’s not entirely smooth sailing from here on out. In fact, I had kind of an unpleasant visit to the emergency department last night. I started feeling sudden chest pain in the afternoon, and so my doctors said I had to go in and get it checked out. Turns out having cancer and undergoing chemo predisposes me to blood clots, so they really had to do a CT to make sure I wasn’t having a pulmonary embolus (a clot in my lung). It took a whole lot of tries to finally get an IV in my arm (my veins are tired of being used and abused) but in the end it all went well. This is a good news/ bad news situation. Good news: I did not have a pulmonary embolus, and although there’s no good reason for my chest pain at least it was nothing serious and I got to go home last night. Bad news: My CT showed five nodules in my lungs. Given my history of cancer, the immediate concern is that they might be metastases of my tumor. That’s not the ONLY thing they could be, and in fact it seems pretty unlikely given that I just finished chemotherapy, but it’s still concerning and it has to be checked out. Bummer, but I have an appointment with my oncologist this afternoon to see how we’ll proceed. 

Faking a smile

Hopefully my last IV for a very long time

   On a much happier note, guess who is on the cover of the BIDMC Quarterly? That would be me!! Don’t know what the BIDMC Quarterly is? Well, its only the coolest magazine in the world, and also Beth Israel’s internal publication about the goings-on at the hospital. Turns out the photographers for the “Look Good Feel Better” event that I went to a few months ago were taking photos for the magazine. It’s just a small article on the inside with a few paragraphs about the event, but I’m excited for my first cover anyway. Funny story: none of my nurses from chemo recognized me on the cover, because none of them knew me when I had my normal brown hair! Would you have recognized me based on this photo?

   Well, now that I’m all done with chemo I am looking forward to all the awesome stuff that I can do as I start to feel better. One of my next posts will have to be a list (yay!) of things I want to enjoy, eat, accomplish, or attempt in my post-cancer life. Stay tuned!

Lonesome

    I had a big cry today. Nothing in particular set it off, at least nothing that I can think of, it’s just been an accumulation of a lot of emotional stress over the last few days (or maybe weeks). I slept in a lot, and then I was just so overwhelmingly sad that I burst into tears for no reason at all.

  The more I think about it, the more I think it has to do with this sort of isolating quarantine that I’ve had to live in. If you know me at all then you must know that I really like people. I like the people I work with, I like making new friends, I like going out, I like to be social. In fact, I think I really NEED it in order to be happy. Everyone does, to one degree or another, but it just so happens that I’m the kind of person who needs a lot more social interaction to feel fulfilled and joyful. I remember reading somewhere that an introvert feels drained by the company of people, while extroverts feed off of group interaction and are energized by it. I definitely fall into the latter category.

   I’m at a point in my life where circumstance has distanced a lot of my close friends, and then all this sickness and chemotherapy just makes the situation so much worse. Every single day I feel tired and nauseated, and that’s not a good recipe for hanging out or having the energy to feel social. That means I stay at home a lot and hang out with my parents (although I love my parents, I’m not counting that time as “social”), and in return all that time alone depresses me and makes me less energetic. It’s an increasing cycle of loneliness and isolation, but it’s difficult to break because there’s a very real physical illness driving it.

     So what do I do? I guess right now it seems like the only thing I can do is wait it out. My last day of chemo is next Tuesday, and after that I’ll start feeling better little-by-little. Hopefully my cheer will return once I’m feeling well enough to hang out with friends again, and until then I’ll try to find ways to keep myself entertained so I don’t completely give in to feeling miserable.

    Cancer isn’t fun, guys. I don’t recommend it.

Quick Update

     I think I finally feel like I might be getting over the worst of this chemo thing!!!!  I had my last long week of Monday-Friday chemotherapy last week, so this weekend was pretty rough. I spent most of it in bed feeling miserable and nauseated, which is unfortunate because my dad is here visiting and I’d like to be able to do more fun things with him. At least last night we went to go see “We Bought a Zoo”, which was lighthearted and sweet and pretty much the perfect movie to see when you’re feeling crappy and have been cooped up all week at home. I still have to be very careful not to catch any gross illnesses and it seems like everyone is sick right now, so I snuck in my own popcorn and just wore a mask the whole time I was out of the house. It’s funny, because I assumed I would catch more strange looks with my mask on, but I must be getting used to it from the baldness because I didn’t even notice :-)

    Today I had my second-to-last treatment with Bleomycin (it’s usually on Monday but got bumped because of the holidays) which means I only have ONE MORE DAY of chemo next week and then I’m done for good! I’m still feeling pretty exhausted at the moment, but at least we’re getting there!!!!

Inspiration

   Chemotherapy has a way of wearing you down. I’m in my last cycle, which means I have to finish this week and then only do two more Mondays of treatment before I’m done for good. I should be more motivated than ever, now that the end is so near, but this feels more like the doldrums than the home stretch. I’m just tired; tired of getting up early every morning, tired of going to the same curtained room for chemo, tired of being bald, tired of feeling sick, tired of being tired, etc etc. That probably explains why I haven’t been writing as often. Even though things are happening in my life, I just am not motivated to write about them because I’m too worn down to find anything interesting.

    So today after chemo I was in this funky worn-down mood, thinking about how I didn’t have anything interesting to write about, when what do you know, I get a surprise package at my door. I love receiving gifts under any circumstances, but this was especially sweet because it was an extremely thoughtful gift from someone I don’t know very well at all. A kind note and simple gifts turned my mood around a lot, and it made me start thinking about things that I find inspirational.

   I’ve been hearing this word a lot recently, “inspirational”. Apparently many of you out there reading this blog find it (and me) to be inspirational. So I looked it up. Inspiring: having an animating or exalting effect. Wow, that’s pretty powerful. If reading this, or hearing my story, manages to encourage you or raise your spirits, then I am sure that this will be one of the best things to come out of this whole cancer debacle. Here are some things that move me, encourage me, and lift my spirits. These are my sources of inspiration.

The view from my bed

My wall of notes and cards. Whenever I get a handwritten note in the mail, my mood immediately improves. I am shocked (really, truly, completely surprised) by the thoughtfulness and kindness of people I know. Some of these cards are from family, some are from close friends, but many are from people that I would consider just acquaintances, who took the time and energy to send me an encouraging though when I really need it most. This wall reminds me that you never truly know who you affect as you go through life, and it’s just so lovely to look at from my sickbed. I also keep my “cats pajamas” shirt that my work peeps signed after my surgery, and a calendar where I can cross off every day and really see how close I am to the end of chemo.

The inspirational collage on my door. When I was in the hospital with my bowel obstruction (when I found out I had cancer) my wonderful roommates put together this poster for me. It’s a collage of cheerful photos and sayings, and it’s just a happy thing to look at every time I walk out the door. As if that wasn’t enough, they included a little secret pocket full of inspirational sayings to get me through the day. It’s nice to read an encouraging thought before facing another loooooong day, and my absolute favorite quotes get put up on my mirror, like this one from Robert Frost. 

    There are many more inspirational things that keep me going throughout this ordeal. Messages on facebook from friends I haven’t seen in years, the constant support of my family (especially my mom), long prayers, feedback from this blog, and the kindness of my medical team… if I think about it, I’m really constantly surrounded by sources of encouragement. It’s a huge blessing, and much of it is due to you guys. So please, keep it up. Keep sending me your thoughts and prayers (I really think that helps), and please know how important your support has been, and how grateful I am for all of your kindness during this difficult time. I don’t know if I’ll ever be able to express how much each and every gesture means to me, but I’ll keep trying!

Wigging out

   Wow it has been way too long since I wrote anything. Sorry everyone, I guess I’ve had a pretty eventful week. Let’s see… my mom left on Friday and my friends Jim, Betsy, and Lucy did a great job of keeping me company/ babysitting me/ taking care of me until my sister got here Saturday afternoon. I feel like I’ve been awfully busy with my sister, although mostly we’ve been staying home and trying out a bunch of new, healthy recipes and watching a lot of TV. It’s a tough life, right?

    Oh, and another really exciting thing happened… my wigs arrived on Monday! I was definitely looking forward to that. When I first found out about the whole cancer thing I wasn’t even really sure if I would want to get any wigs, but then I learned that my insurance refunds me up to $500 ($500!!!) in wigs per calendar year. Well, they call them “hair prostheses” and require a prescription from your doctor, but it’s the same thing. Turns out $500 doesn’t get you very far in the wig world though, since any decent synthetic wig costs at least $250 anyway. Cancer is expensive! So now I have four options when it comes to the top of my head: I can go bald, wear a wig, tie on a scarf, or put on a hat. Let’s examine them one by one.

1. Going bald. 

Hello up there!

Pros: Super easy, no prep time. I have been told I have a pleasantly round head.

Cons: Quite chilly, especially in the winter. Also, it is obvious that I have cancer and sometimes people give me odd looks. Today I thought it would be funny to stand in the “hair care” section of Marshalls and sigh forlornly while staring at the products; apparently no one else shares my sense of humor.

2. Wearing a wig.

Hair. In my face. All the time.

This wig is actually more flattering, the lighting is just bad.

Pros: Not immediately obvious that I have cancer. Easy to achieve a chic hairstyle with absolutely no time investment.

Cons: It gets really hot. When I wear a hat I just whip it off as soon as I get warm to cool off, something tells me that this will not be as socially acceptable with a wig. Also, I feel like my hair is always in my face, and I can’t tie it back because then the mesh-wig part shows.

3. Tying a scarf on.

It's staying on, for now!

Pros: Can be more festive than a hat. Lots of different ways to tie it and show off my individual style. It says “I might have cancer, but I have cancer with flair”.

Cons: I really don’t know that many ways to tie a scarf, although I see ethnic girls on the street rocking cool scarves all the time. I can barely manage pulling it into a bun-type thing without having it fall out immediately. Also, I feel like it looks super cancer-y.

4. Putting on a hat.

So warm and fuzzy!

Pros: Very warm and winter appropriate. Can easily be removed when I get too warm.

Cons: When wearing a cool-looking knit hat, the wind will go right through it and my head gets very cold. To combat this, I wear a less-cool-looking hat outside and switch to a knit hat indoors. Who wants to carry around two hats?

    Well, there you have it, the four head-styles (a more appropriate term than hair-styles, I think) available to a woman undergoing chemotherapy. It could be worse though, I could be a dude and then I’d only have two options!

Face Time

    Most of you have never seen me without makeup. If I tried, I could probably list every person in the last year who could have possibly caught me in the small window between waking up and doing my makeup, and if you exclude family and roommates that list is TINY. It’s not like I’m terribly ashamed of the way I look, it’s just that putting on makeup is an important part of the way I like to present myself to world. It’s the same reason none of you have caught me out and about in sweatpants and flip-flops, I don’t really want people to see me that way.

    What’s the problem? Well, it’s hard to feel pretty when you’re sick. It’s not like this is some groundbreaking statement, just about anyone who has spent a weekend shuffling around battling a bad head cold can back me up here. There’s nothing appealing about dark bags, puffy eyes, red noses, or splotchy skin. Fortunately, most illnesses come and go in a reasonable amount of time and let us all resume our happy, fresh-faced activities. Unfortunately for me, I’m in it for the long-haul this time. There are plenty of days when I’m feeling tired or down, and I just don’t feel like making myself up. That would be all fine and dandy if I didn’t care about it, but the truth is that seeing myself without any makeup on, actually looking sick, makes me feel more down in the dumps than before, and I don’t want to go out looking that way.

    So here’s what I’m gonna do: I know you guys like pictures, so I’ll document what I look like as I go through my regular makeup ritual for everyone to see. I think it makes a big difference, so hopefully this will keep motivating me to take a few minutes to pamper myself in the mornings. On days when I’m really sick and can’t be bothered to do anything to my face, well, everyone I know will already have seen what I look like without any makeup on so it won’t be a big deal.  

      (If this was a movie, this is where the snazzy musical montage would play while I got ready and took a bunch of photos. Also, I’m well aware that it’s past 3 in the afternoon and I’m just now getting myself ready for the day. Shut up. I have cancer.)

    Oooh okay deep breath aaaaaand this is what I look like with nothing on my face.

Well, that’s a lie, I have a lot of features on my face like eyes and lips and a nose and stuff. I mean I have no MAKEUP on my face, which makes this is a pretty scary picture for me to post, and probably a semi-scary picture for you to look at. Let’s move on, shall we?

Much better. This is me after doing my foundation and concealer. It’s funny how not having hair changes how you look. I think the quality of my skin is much more noticeable now, and so I spend a lot more time covering blemishes and trying to lighten up those dark areas under my eyes. Another thing that I do more now that I don’t have hair is….

Add blush!!! I was never much of a blush girl before, but it’s crazy how a pop of pink on your cheeks can make a huge difference between looking kinda tired to looking very healthy and awake. Now I do my eyes and…

TADA we’re done. I’m forever grateful to the eyelashes that still haven’t fallen out. They’re definitely sparser than they used to be, but if these last few suckers can stay with me for a few weeks longer I’ll be a happy girl.