Update on 2017 so far

Well, I realized it’s been a while since my last post. Much has happened, and I’ve been very busy. I think it also goes to show how cancer is beginning to have a smaller influence in my daily life. However, the past few weeks have involved alot of cancer things, so I thought I was share.

February marked three years since my diagnosis, and subsequently March marked three years since my surgery. Three years since I heard the words, “it’s cancer”, and my life changed. Three years since I had not only my first surgery, but my first three surgeries in a short time span. Three years since the third of those surgeries was 7+ hours long and required a 5-day hospital stay in a step-down ICU. And three years since I started to come to grips with the fact that I would lose my hair as a result of chemo.

This time of year also now means that it is time for my annual scans. I had a regular check-up with my new oncologist in February, when she ordered my annual MRI and also requested a mammogram. I scheduled both quickly, wanting to get them done. However, the day before my appointment for both, I got a call saying that the MRI was denied by my new insurance. I kept my mammogram appointment, since they said that might help get the MRI approved. The mammogram went fine, and everything looked normal. However, the tech scared the sh*t out of me when instead of just taking me right inside the door from the waiting room, saying everything is clear, and letting me go, she took me all the way back to speak with the radiologist. All the radiologist wanted to do was (semi)lecture me on how I should not be getting mammograms because I am so young, and I should get an MRI or 3D ultrasound. When I told her that not only was my MRI rejected (to her shock), but the mammogram was ordered by my doctor, so I just requested that she send that as a note to my doctor. I had other things to deal with.

Getting the MRI approved ended up being a much bigger fight. It took almost two months, and numerous calls to my insurance company and my doctor’s benefits office. It got rejected multiple times, including more than one phone call that my doctor personally made to my insurance company. Apparently, I did not meet their criteria, and did not show sufficient medical necessity. I finally got a nurse navigator from my insurance involved, who at first did not prove to be extremely helpful. Once she found out that it had still gotten rejected after my doctor called, she suggested that I try to find a grant from the American Cancer Society, since it probably wouldn’t ever get approved. This was the tipping point for me, and I got mad (regrettably, at her). Even though she was very apologetic and also thought it was ridiculous that it kept getting rejected, she said there were not many other options. However, the next day, I got a call at the end of the day from her saying she had gotten it approved! Apparently, she had gotten pretty much everyone she could find involved, including her superiors, and they somehow approved it!

I quickly made an appointment to get it done, since I had been in a state of quasi-scanxiety for a solid 2 months. Luckily, I was even able to make an appointment for an evening time, so I didn’t have to make up yet another excuse for why I have so many doctors appointments. I went this week, and it went relatively smoothly. Of course when the nurse took me back, she was looking over my forms, and the conversation went as follows:

Nurse: “You said you have an implant? A breast implant?”

Me: “Yup, on the right.”

Nurse: “You mean, just one?”

Me: “Well, I had a mastectomy.”

Nurse: “And you’re 26? Oh my! You’re so young!”

Me: “Yup : )”

Keep your fingers crossed while I wait for the results!

I’ve also been trying to plan for yet another surgery to try to fix my reconstruction. Even though I received a small implant during my last surgery, I am still noticeably uneven. While it was definitely an improvement, I still struggle to find bras and shirts that I can wear that try to disguise the fact that my reconstructed side is still significantly smaller. While it has been good enough, “good enough” is not really the way I want to describe my chest long term. So, I found yet another new doctor, and met with her a few weeks ago. She was super nice, and went over my options. Basically, my best option is to have another surgery to get a larger implant (which is exactly what I was expecting her to say). However, because I had radiation, which leaves skin very tight, she said she will be limited in the size since my skin won’t stretch easily. But, I really think any improvement will help, and I am currently trying to plan when would be the best time. Luckily, this will end up being one of the easiest surgeries I’ve had.

The past few months have also included some bad news for other people in my cancer orbit. A friend has suffered a local recurrence, requiring her to start chemo, and one of the bloggers I follow has suffered a metastatic recurrence. Then, earlier this week, I found out that my favorite blogger, Mandi Hudson of Darn Good Lemonade, passed away. I first came across her blog when I was recovering from my surgery. At the time, she was in remission from an early-stage diagnosis, and continued to publish amazing posts about advocacy and the after-effects of cancer treatment. A few months later, while I was going through radiation, she was officially diagnosed with a wide spread metastatic recurrence. Since then, she struggled to find a treatment that worked and seemed to have the bad luck of getting every odd side effect from her various treatments. But, her positivity never stopped, nor did her will to keep trying new drugs in the hopes that it would keep her here a bit longer. She is proof that you are never too young to be diagnosed, and that catching the cancer early is no guarantee of a “cure”. My thoughts are with her family and her husband, and I hope she is finally in peace and pain-free. If you would like to make a donation, she was a strong supporter of Metavivor, an all volunteer and metastatic cancer patient run organization, that works to increase funding to metastatic breast cancer.
All of these are reminders of just how quickly life can change. Along with my renewed empowerment from my trip with First Descents, I was inspired to sign up for something I NEVER would have considered before my diagnosis. In October, I will be participating in the Young Survival Coalition’s (YSC) Tour de Pink, their annual fundraising event. This means I will be riding 200 miles over 3 days, and raising money to support the programs that YSC offers to young women who are diagnosed with breast cancer. A HUGE help in making this possible (given that I do not currently own a bike) is that I was lucky enough to receive a survivor bike from YSC’s partner, Liv Cycling. For the past few years, Liv Cycling has been kind enough to donate bikes to survivor riders who do not already own bikes, and would not be able to purchase one. I am SO incredibly grateful to be receiving one, and I cannot wait to be able to start training! Once I finalize my team, I will post more about my fundraising efforts!

Here we are again

Well, it’s October…again. It’s easy to know this, even without looking at a calendar. Not because of the cooler weather, beautiful leaves, or apple cider, but because everywhere you go, everything is pink. This month will always leave me feeling conflicted. It’s all about support and awareness, but so much of what you see is misleading, inaccurate, and funds frequently just go to companies profits, and not benefiting research or cancer survivors in any way.

I’ve written a post like this for the past two years, so I feel like there’s not much else I could say. All I would say is to, once again, think about where the money from a product you are buying is going. Seriously, just read the fine print. Often it says, right there on the product, that not one cent from that purchase will do anything. Rather, just donate directly to an organization that will actually use the money to make a difference. More of your dollars will actually go to the organization, and you can pick where they go!

Here is a list of organizations that have either personally benefitted me, or truly make a difference toward research.

Consider a donation, instead of buying more pink products.

Young Survival Coalition– YSC is one of the main organizations dedicated to supporting and advocating for young women with breast cancer. If you don’t want to make a donation, consider atleast signing their petition to gain more support for the 12,000 women under 40 every year who are diagnosed with breast cancer.

First Descents– The organization that I went on my life-changing kayaking trip this summer. They are simply amazing and I feel they have truly brought me back to life.

Breast Cancer Research Foundation– BCRF is one of the most reputable research organizations. Whatever you do, don’t give to Komen!

Metavivor– This is an amazing, volunteer-based organization that is the premier organization for women diagnosed with metastatic breast cancer. They contribute 100% of their donations to research for metastatic breast cancer. Metastatic breast cancer receives so little of research funds, and they are desperately needed. I can’t afford to donate much, but this is the organization that I donated to!

October is also significant for me because it marks two years since I finished treatment. Today, actually, marks two years since my last radiation treatment. Many of the cancer survivors I have met use the end of their treatments as their “cancer-free” date and the one to celebrate. However, for me, this is harder. For me, my diagnosis started everything, my surgery was awful and is when they (theoretically) removed all the cancer, but then I still had months of chemo and radiation. When radiation ended, it was more anti-climatic than anything. It also didn’t really feel like the end. Since then, I have still had two surgeries (with one more still likely), regular scans and doctors appointments, not to mention the fact that every 12 weeks I still find myself in the oncology office to get a shot in my stomach that keeps me in menopause. So while my diagnosis, for me, is the most significant date, the end of treatment is still noteworthy. All I can do is continue to live my life as full as possible, and advocate for young women who are diagnosed with breast cancer, hoping one day for a more treatments options and a cure.

A bit of perspective…

Today was a really sucky day, towards the end of a not very good week. You see while my job is with the federal government, I am a contractor. This means that while I work with federal employees and do the same job, I am paid through a private company and therefore do not enjoy the job security or benefits of being a federal employee. I found the true meaning of that this week when I was notified that my contracting company did not have it’s contract renewed, and that the contract for my job was awarded to another company. Now since my job is not changing, the new company is legally required to offer me the position I am already in. However, they are not required to match my current pay or benefits. While I will still have a job, what I will be paid and the benefits I will receive are completely unknown. To make matters worse, the company that was awarded the contract does not have a good reputation and is known for offering very poor benefits.

This is very upsetting to me since I can predict at least some of my medical expenses…and they are expensive. The Lupron shot that I receive every three months is a few thousand dollars alone, not to mention doctors visits or any extra tests that might be needed. I had just gotten acclimated to what my new monthly health insurance would cost. While it was very expensive, I was at least comforted by the fact that it would cover my medical bills at a similar level to what I’m used to. Now I will be starting all over again. To say the least, it was a stressful day.

Perhaps luckily, I had to leave work early today to meet with my thesis group for my Master’s program so we could interview a government representative for our project. I met up with my one group member and we were talking while we waited for the other to get through security. He asked if we had to wait for someone from the office we were going to come meet us. I said, “No, I have the office number. It’s on the 7^th floor.” His response, “oh wow, I don’t think I’ve ever been above the first floor.”

This was my first bit of perspective.

Anyone who knows about the my department knows that in addition to MANY annexes all over the DC and Northern VA area (including the one I work in), the main Department building is organized so that the higher the floor, (roughly) the more important or “higher level” someone is. (This is why when I had my internship in the Spring, I felt so important since my internship was on the 7^th floor!) When my group member responded in this way, I remembered how lucky I was to have had my internship that I was this familiar with it and still work for the agency.

We went up to our meeting, which went well, and after I stopped in my old internship office to say hello. It was so nice to see everyone, but again I was reminded how crazy this whole thing is. Here I was walking around this important building, while I just casually go to visit people I know.

This is when the perspective really started to hit.

On my way back to the metro, I really started thinking. This past Sunday marked two years since my last chemo, and when I start to think about it, it truly is crazy how far I’ve come. When I was going through treatment, there is simply no way I would have believed the experiences I would get and where I would be in such a short time. As I past the hoards of tourists, I realized how incredibly grateful I am to not only be alive, but be living in such an interesting and exciting city (that people will travel from all over the world to come visit). I get to study in a top program in my field, regularly attend lectures by renowned experts, and work every day in such an important and exciting institution.

Now don’t get me wrong, this coming semester will be extremely difficult and my job is certainly not my dream job (not to mention I have zero idea what I will do about health insurance), but I know I am in the right place and path to get there. Sometimes when I look back at pictures from high school, college, and before my diagnosis, it feels weird because it feels like another lifetime and that I was such a different person. But now sometimes I think back to what I was like going through treatment and I am so amazed at where my life is now.

Out Living It!!!

Wow, I really don’t know where to start with this update (I think I say that every time). I realized it had been a very long time since I last posted. I think that’s a good sign of moving on with non-cancer related life!

May and June in particular have been particularly hectic and, quite literally, all over the place! I finished my semester in May and went home for a short time to see my family, as well as had a few check-up appointments with my doctors. Luckily, all is well and I got another Lupron shot. Then I came back to DC for a few days before I left for Tel Aviv for my study abroad course. I was in Tel Aviv for two weeks, and then flew to Rome for a week to walk around and eat gelato. It was an amazing, beautiful, and delicious three weeks.

When I came back, I had a job interview for a government contractor position, and I got it! I started right away, so I now work with the office that helps train Foreign Service Officers before they are sent to Post. So far, it’s really challenging but also really interesting and the people I work with seem really nice. Also, a special shout-out to my supervisor who let me take a week off, after having only worked two weeks, so I could attend my white water kayaking trip in West Virginia with First Descents.

Which brings me to the main part of this post, which can be summed up in: FIRST DESCENTS IS CRAZY AWESOME!!!

It’s hard to even begin how to describe how unbelievably amazing my week with First Descents (FD) was. I did not have much idea what to expect, and thanks to my busy past few months, had not had much time to come up with any preconceived notions. I am not an outdoorsy person, and I’ve certainly never kayaked before but I headed to WV knowing that everything I had heard about FD was amazing and I figured it would be a way to try something new. I could never have expected that it was be such an incredible experience and that I would meet so many amazing people who I would so quickly form such tight bonds with.

The way the week broke down was: the first day everyone arrived, then we had two days on the water, followed by a day off (in which we hiked to a waterfall), then two more days on the river. Since I am neither outdoorsy nor athletic, the actual kayaking part was tough. However, the guides as well as FD staff could not have been more helpful or understanding and took as much time as I felt needed to go over things or help me. I finally felt like I got the hang of it by the last day…so I kinda wish we had had one more day!

However, while the kayaking was awesome, and the scenery could not have been more beautiful, by far my favorite part was the people. I was one of 12 participants, plus 7 staff including a medic, photographer, and chef and sous chef. Something that I had not been expecting was that almost all the staff had had cancer themselves. Only two of the 7 staff had not had cancer. It was amazing to be surrounded by so many people who were my age and we had all been through varying degrees of the same experiences. While our ages, backgrounds, types of cancer, and treatments varied, we all understood and supported each other. We could laugh and cry about our struggles (there was quite a bit of both), and be there for each other. As I learned first hand, there is a certain magic that happens during FD trips. It didn’t matter that we were ages 18-39, from all over the country, or had different backgrounds. We all understood each other on a level that not many in the real world can, and that is a powerful feeling.

On the last night, like every night, we had a campfire (only the last one included an actual bonfire…and s’mores!). Like every night before, one of the staff asked a question to get the conversation going. We could say something if we wanted, or just listen. The last night the question was what we were going to take away from our FD experience. Many people said confidence in who they are, more openness in talking about their experiences, or a “what the f*ck” attitude when it comes to trying new things.

While I can honestly say I will take all those things away as well, I said that what I will take away more than anything is a sense of normalcy and comfort. After cancer, we all just want to feel normal again. But this can seem impossible, and finding people who you can relate too is rare. I’ve even come to see myself as not being normal in a way in which I can be proud of. I’ve overcome huge challenges and am still working hard to pursue my dreams. But spending a week around people who are actually my age and have been through cancer treatment made me feel like I wasn’t so alone. We had lots of mini pow-wows about our experiences, fears, and hopes everywhere from around the dinner table, or on the hammock at night, even on the river. It was just so refreshing to be able to have frank discussions about our experiences, and it made me feel like I wasn’t so weird or unusual.

No one was even close to being ready to leave. We all hugged and cried goodbye as we headed our separate ways. While I know we will stay in touch, especially thanks to social media, it’s so hard going back to the real world where were are not surrounded by people who truly get it. This is a group of some of the best people I have ever met, and I expect it will continue to bring me to tears every time I think about it for quite a while. But they are good tears, because as they say in FD: “Got along fine without you before. Can’t get along without you now.”

 

Scans and travels

I’m not sure where to start with this post. The past few months have been very busy, stressful, and exhausting, but now that they are almost over, the next few months should be exciting and hopeful!

Ok, so some explanation is obviously necessary.

First, I feel the need to acknowledge the fact that two years ago, I was just getting discharged from the hospital after my mastectomy. My mastectomy was the 24^th, and then I spent 4 nights in the hospital. Those few days in the hospital and the weeks that followed are a nauseous, painful, and uncomfortable blur. However, despite the small limitations I still have (like being unable to sleep on my stomach…ever again) when I think back to how I was then, I am amazed at how far I have come. I’m not sure whether to consider my surgery as my official cancer free date, but no matter what it is still a significant day.

Now onto my life in the past couple weeks. Well first, I am a full time student, and have also been working full-time in an internship. I love my internship and it has made me even more excited to start my career (which I hope to do in the next few months), but the combo by itself would be stressful and exhausting to say the least! Too many 13-hour days!

However, on top of all that, I have also been dealing with scans and doctors appointments, and the stressful logistics that accompany them. First, I had to deal with the fact that my surgeon, who I was supposed to see for my annual check-up and yearly MRI, left my hospital and my appointment was canceled. So I had to find a way to get a new breast MRI and make an appointment. However, the fact that I live in DC now, and all my doctors are in PA, complicates things. Not to mention that I hate the doctor I see in DC (you’ll find out more on why soon!). In the end, my oncologist sent me an order to get an MRI in DC, and I decided to forgo a doctors visit.

Just to make things funner (and by funner, I mean terrible), when I mentioned to my oncologist on the phone (when we were discussing my breast MRI) that I had been having a weird pressure in my head that wouldn’t go away, she decided to just throw in a brain MRI. No biggie, right?

So I got both my orders and scheduled my brain MRI immediately (since I was freaking out!). I had to wait to schedule my breast MRI since I needed to see how long it would take until I got my images from last years scan to compare it too.

By some miracle, the hospital actually had weekend hours, so I was able to get my brain MRI on a Saturday and did not have to ask off from my internship. I did not expect to get the results then, though by chance, I had an appointment first thing Monday to get another Lupron shot (when I did need to ask off for). After I called out my jerk doctor for being unable and unwilling to fill out a simple for verifying my diagnosis and treatments that I needed to apply for a scholarship, I asked if he could check to see if the results were in yet since I was very concerned. He checked, but they hadn’t been read yet, so he said he would keep checking and call when he got them. I also asked if he could help me schedule the breast MRI since I had just called to schedule it and they told me that they only have 3 time slots per day for breast MRIs and the next available appointment wasn’t for another month! He said they would help, but since the scheduler was on lunch when I was there, I had to deal with the receptionist who couldn’t have cared less and was zero help.

Meanwhile, I did not hear from the doctor the rest of the day, so when I left work (at 4) I called the office. They told me the results were in, but only my doctor could give me the results (even though he didn’t write the order, and they never actually sent them to my doctor who did!). So after my begging for them to find anyone else who could because I was so worried about them yielded no results I left a message and said I would call back the next day.

I called first thing in the morning the next day, but was told that they weren’t open yet (even though the website and phone menu said otherwise), and the woman on the emergency line absolutely could not take a message or make sure the doctor actually called me back. So I didn’t hear from him the rest of the day, and by the time I could call in the afternoon, he was gone. So I left an even angrier message, but had started to assume that this meant the results were probably normal.

The doctor FINALLY called me the next morning and said there was nothing abnormal. It only took several angry phone messages and 5 days after the MRI, but all that matters is that I have NO BRAIN TUMOURS!!!! YAY!

So once I found out my brain was cancer free, I had to get back to trying to make sure my breasts are too. First I called my hospital, and they told me that they only had three possible appointment times each day and that the next available appointment was a month away. So I called around to other breast centers in the city to see if anywhere else had more flexible hours and better availability. I finally found one and was able to get a later afternoon time within a few weeks. I still had to leave work early, but it wasn’t too bad. However, since this was my second doctors appointment in less than 3 weeks (which is actually pretty good for me), and I am a seemingly healthy 25-year old, the woman’s response was “of course, gee I hope everything is ok”. Lady, you cannot even imagine!

Fast forward a few weeks and I was ready to get my breast MRI. The day before my appointment I got a call from the breast center, saying that they needed me to call my doctor and check on the status of my pre-certification (or something? Chemo brain truly is the gift that you can’t get rid of). Anyways, I ended up being in the hall of my office for twenty minutes on the phone while I tried to explain that I shouldn’t need one and that the insurance would cover it given my medical history. The woman did not accept this answer, then made me go through all the same questions I went through when I scheduled the appointment. Let’s just say I really hope none of my coworkers heard me explain how I get injections to suppress my ovaries so that is why I don’t get periods anymore. Ugh!

Luckily, the next day my actual MRI was pretty uneventful. Since I got the last appointment on a Friday, I still had to wait several days to get the results. But they actually sent to results to my doctor, and again my results were normal!

Well I still need to figure out what I want to do about my DC doctor (since I hate the current one, but finding a new one will be challenging), I feel like I have some time. I see my oncologist and radiation oncologist in May, but I’ll be done my semester and internship then. Plus, I really like both the doctors, so I’m not dreading those appointments as much.

Ok, so that was the past few sucky months. Now onto the upcoming hopeful and exciting months!

For starters, at the end of May I will be leaving for a short-term study abroad program….in Tel Aviv, Israel!! Eek! It will be two weeks, and will be seeing some amazing sights. I am also trying to see if I can add a week in Rome. I studied abroad there during college and have been dying to go back, not to mention, after a long and stressful few months with everything from doctors to my school, just going to a beautiful place where I can be totally at peace and relaxed and eat ALL THE FOOD sounds just perfect. Plus, since this will be my last summer before I enter the working world, I want to take advantage of my freedom!

After I get back in June, I will have a few weeks before I leave for New River Gorge, WV to go whitewater kayaking! I am very excited about this trip, even though I am not an outdoorsy person, but it is with the organization First Descents and I have heard nothing but amazing things about these trips! First Descents organizes these outdoor adventure trips (they also have rock climbing and surfing) for young adult cancer survivors, and they are completely free for the participants! It will definitely be an adventure, but as the organizations slogan says, I want to get “out living it!”.

But my summer travels may not be over yet. Before I graduate my program, I need to complete a capstone thesis, and since I am in an international relations program, they offer travel funding to go abroad and do research. My capstone group (yup, they’re group projects, ugh!) is studying immigration and integration in Europe, so we may get funding (not enough to cover all expenses, but still) to go and do research in places like England or Germany. Doesn’t sound too bad, does it?

Meanwhile, and in between all these trips, I will be desperately searching for a full time job as well. Besides the fact that I will be even more poor than I can possibly imagine, I also need to get a job that will offer me benefits before my health insurance card turns into a pumpkin when I turn 26 in September. Luckily, since I have taken summer classes, I will only be part time in the fall, so I will not have to repeat this semester where I am drowning in schoolwork and long days. After my internship this semester, I’m also really excited to start working in the field, so hopefully I will find something soon!

I’m really hopeful and think that 2016 will turn out to be a really great year for me! I still have a lot to figure out, and A LOT of work to do, but I’m really excited about the next few months! I feel very hopeful for the first time in a long time, and it feels great!

Two years

This is a slightly delayed post thanks to a stomach virus, but I couldn’t let the occasion pass un-acknowledged.

As of Sunday, it was two years since my diagnosis.

It’s hard to describe how I feel about this day, the day that marked two years since my diagnosis. I’ve felt this way since last year, when it was one year, and I feel like the only thing I’ve figured out since is that I probably never will. It’s hard to believe that it has been two years since I started having to deal with cancer.

Especially now that I’m done treatment, it’s crazy how much it still impacts my daily life, especially in ways you might now expect. It means that finding clothes requires careful thought, and frustration, about fitting my still uneven chest (and heinous looking port scar), despite multiple surgeries. It means learning to act like nothing is wrong when I’m having a hot flash, and just hope people don’t see the sweat forming on my forehead. It means getting creative when people ask what I did prior to starting grad school.

It also means a headache never seems to be just a headache.

The past few weeks have been busy, but even when I’m stressed, I’m glad that I’m stressed doing something I love. My start of this semester was hectic since I had to change some of my classes, and I also just started a new internship. However, on top of this, I’ve also been dealing with a strange pain/pressure in my head that won’t go away. I also need to find a new doctor because my surgeon, who I was supposed to see in a few weeks for a check-up and my yearly MRI, is leaving my hospital and all his appointments until then are canceled. Crazy!

So now I am left to find a way to get not one but two MRI’s. This is because when you tell your oncologist you have a weird pressure in your head that won’t go away, the response is, “well why don’t you get a brain MRI too”…because obviously, just throw in another MRI. Hopefully it will come back clean though, and gives me peace of mind.

Other than this, I have no new revelations or news. I’ve just been really busy and working hard and I really hope that things get a little less crazy in the next few months, but above all else, that everyone I care about and myself stay healthy!

Moonshot to Cure Cancer

By now many have heard about the “Moonshot” to cure cancer that President Obama announced in his State of the Union. He put Vice President Biden in charge of this effort to fund the many advances that are on the horizon. The VP even kicked off the initiative on Friday at the hospital where I was treated! Woot UPenn’s Abramson Cancer Center!

However, this is also personal for the Vice President sine he lost his son to cancer last year (seriously, those pictures from Beau Biden’s funeral are heartbreaking). But he also wants to know why it’s personal to everyone else! Here is my letter to the Vice President:

Dear Mr. Vice President,

Like too many people, cancer is very personal for me. I truly wish I didn’t know as much about cancer as I do. This is because not only did I lose my Dad to pancreatic cancer, but I am also a breast cancer survivor.

For most of my life, I had never really known someone close to me who had cancer. However, soon after I finished my freshman year of college, my Dad was admitted to the hospital. It took almost two weeks for the doctors to realize that all his symptoms, which included suffering a major stroke, were being caused by Stage 4 pancreatic cancer. Pancreatic cancer is a particularly aggressive cancer, with few treatments available. My Dad was my hero, and he fought hard for a year. Unfortunately, he passed away the next summer. I was 20 years old.

I spent my remaining two years of college trying to adjust to life without my Dad. Life was harder than I could have imagined, but I didn’t let that stop me from living the life I knew he would want me to. I still pursued my dreams and worked hard to make them possible.

When I graduated college, I was ready to move on to the next phase of my life. I had finally figured out what I wanted to do, and I was excited about my future. I applied to graduate school, and dreamed of getting to work in foreign policy. However, soon after I finished my graduate school applications, cancer invaded my life again. This time, however, I was the patient. I was diagnosed with Stage 3 breast cancer at just 23 years old.

Less than a year out of college, and I was facing aggressive cancer treatments, as well as my own mortality. I had to make major medical decisions, but what was harder was postponing starting school. I had a major surgery, months of chemo, lost my hair, and weeks of radiation. But, I survived the treatments! I finally got to move to DC and start studying what I was so passionate about.

This doesn’t mean it has been easy since finishing treatment. I will be on hormonal therapy for the next several years, which comes with side effects and risks of its own. I have also had multiple reconstructive surgeries since, and frequently need to see doctors or have tests and scans.

It’s also hard being so young with a disease that is often associated with being older. People are constantly shocked by how young I am, and I find it hard to relate to many other breast cancer survivors. Luckily, I have found the amazing young adult cancer community and I enjoy trying to bring awareness to the fact that anyone can get cancer. While I don’t know if my cancer will come back or if someone else close to me will get diagnosed, I know cancer will continue to be a big part of my life. That is why I truly hope I see cancer become a chronic disease in my lifetime! Or maybe even a cure!

Let the Vice President know why it’s personal to you: https://www.whitehouse.gov/webform/cancer-touches-all-us-share-your-story-here

In with the new!-2016

It’s 2016! As I sit down to write this post, I’m not sure what to say (so this will probably be short!). Last year, all I wanted was for the year to be over. I don’t think I have ever wanted a year to be over more than I wanted 2014 to be over. 2015 was a better year…a much better year! But at the same time, I feel guilty because I know some people close to me have had difficult years and dealt with their own losses and challenges. I’ve also had some of my own stresses that have been getting the better of me recently. It’s super annoying how cancer can make you feel guilty about having normal stresses…I mean, come on, I can’t be super human ALL the time!

But then I look back and see how much I have grown in the past year. I am halfway completed my Master’s degree and have made it over a year out of treatment and remained cancer-free! I am also, cautiously, optimistic and hopeful that 2016 will finally be the year that things in other parts of my life finally come together. I will finish my Master’s degree and am already starting to look for full-time positions in my field (which is early-mainly for financial reasons and since I will need new healthcare once I turn 26 in September).

I’ve never been big on making New Year’s resolutions, and like most, I’ve never really kept any that I have made in the past. And all I really want, above all, is to remain healthy! While I certainly will continue, though definitely need to improve, living a healthy lifestyle, I know that this is atleast partly out of my hands. So all I can do is continue to live my life, taking advantage of every opportunity and new experience.

I know I have some challenges coming up this year, but I am looking forward to many more and much bigger and better exciting new experiences!

A day in the life…

As I was walking home last night, a thought occurred to me about my day. For me, now, it was a pretty normal day…nothing out of the ordinary. But the more I thought about, the more I realized that it kinda perfectly showed what its like to be a young adult who is trying to adjust to life after a cancer diagnosis.

First, I got up and went to have a consultation with a new plastic surgeon. I still have to get my nipple reconstruction, but I was also really looking forward to another opinion. To be perfectly honest, I’m not very happy with how my reconstruction is. I was told (quite literally in fact) that reconstruction can look so normal that you may not be able to tell. No one would ever say that about mine. I am somewhat the same size, which for now is enough, but my skin is very elastic which means my natural side does not sit the same as the reconstructed side. This is exacerbated by the fact that the radiation makes my reconstructed side even stiffer.

So off the meet another doctor I went. It was a little weird because the office was not in a big hospital and does more elective procedures than non-elective (atleast it seems). The doctor was very friendly though and actually had my original plastic surgeon as a student! (This is not totally surprising since I in part chose her because she went to med school where I had my previous surgeries) Unfortunately, the consultation did not go quite as planned. She agreed that I was still uneven (which did make me feel less crazy), but said that I would not be a great candidate for nipple reconstruction because my nipple is pretty flat and light in color. It would not be worth having a procedure to recreate something that is flat, and in order to get the right color, they would have to tattoo both nipples. She also said that there isn’t anything she could do to make me more symmetrical. So overall, a pretty disappointing appointment. She did inject some more steroids into my port scar, which has started to become more painful. Since it’s keloided, she said she could definitely try to revise the scar by cutting out the scar and redoing it. However, this would make the scar longer when they close it and she suggested I wait.

After my appointment, I went back to my apartment and changed, and then attended a lecture on security sector reform in Tunisia. One major perk of living in DC is that there are always tons of interesting events that are free and open to the public, so I have been trying to go to as many as I can. The lecture was really interesting (well for nerds like me), and luckily close to my campus so after it was just a short walk to the library so I could try to get some work done (hah which didn’t really happen). Then I had class, and then after class I met with a girl who currently has a paid internship with the State Department (my ultimate goal!) so I could pick her brain on an application process that can only be compared to the Hunger Games.

So all in all, a pretty normal day for me. But it kinda encapsulates the weird juxtaposition that is my life and the life of a young adult trying to not let a cancer diagnosis stop them. It’s hard, but I don’t think any young person wants to let their diagnosis stop them from living their life.

One year cancer free?

This is a delayed post, which will also be brief since I am typing with two fingers thanks to a hand brace and a broken pinky. But I felt it required acknowledgment since, as of about a week and a half ago, I was officially one year out of active treatment. I remember my last radiation treatment being very anti-climatic, and I still feel that way about this particular cancerversary.

One thing I will say is I can’t believe how fast this year has gone. Next month when I finish this semester, I will be half way done my Master’s degree. February also feels close (though I guess it is still 3 months away), which will be 2 years since my diagnosis. Two years?!?! I don’t even understand how that’s possible. Two years seems like such a long time.

I also know that I still feel the effects of my treatment. Chemo brain does not seem to be going away completely. I still have many times when I can’t remember something, lose my train of thought, or just have a hard time concentrating. This is annoying and sometimes embarrassing, for example like a few weeks ago when I was giving a presentation in one of my classes and lost my train of thought for a good 45 seconds so it was just silence and me saying “ummm, uhhh, hmm”. To be fair, I was also rushed because I didn’t have as much time as I thought, kept getting interrupted by my professor (because he does that to everyone), and annoyed with the b*tch sitting in the back row channeling Liz Lemon with her nonstop eye rolls! But still, it wasn’t my best moment.

I’ve also had a crazy, difficult few weeks. My best friend lost her Dad to stupid cancer, and one of my aunt’s passed away suddenly. It’s been constant reminders that you never know what’s going to happen and you should enjoy each day. A particularly important reminder as we head into the holiday season.

All I know is that I feel pretty good most of the time, but I still have moments when I am absolutely paranoid that my cancer will come back. I can only hope that with time this will get less, but I don’t really expect it to ever permanently go away.

The doctor said this type of brace is named after a boxing term, so he told me to fee free to embellish my story. The sad truth is I fell going up the stairs…at the library…while holding coffee. Lesson learned: take the elevator.