Some Thoughts on Two Years

This past December 22 was my two year off chemo-anniversary! In some ways it feels like a lifetime ago, and in other ways, it seems like two years isn't that long at all.

This second year was much better than last year. Things have become somewhat more "normal".  I have settled into new routines, my hair is at a length I don't hate, and my scans are now at 6 month increments. Two years ago, reaching this point seemed lightyears away, so I don't take a second of this for granted.

All that being said, this year was not without challenges. Challenges that relate to cancer and challenges that come up with life (because unfortunately getting cancer doesn't disqualify you from other crappy things). Luckily, after cancer, anything seems manageable, so there's that!

I think this year, the realization that cancer is forever really set in. I am now back on the road I had planned for myself, but I have to make accommodations for what happened. This will affect everything in my future in someway. It has been kind of a lot to take in.

I had a first, despite it being my second year. I had my first real sickness. I am not a person who gets sick (thats why it is almost laughable that I got CANCER). I had a sinus infection this past summer, but  I can't remember the last time (before cancer) that I had anything other than a cold. Anyway, I managed to pick up the nasty cough crud that was going around literally everywhere. It came on in stages and lasted for a month. Turns out I had a terrible case of bronchitis and a sinus infection. Nothing a little mucienx and antibiotic couldn't fix, but it still freaked me out. I think during cancer you get so used to feeling sick and then once you feel better, it really freaks you out to be sick again (even if it is minor). It took me a month to kick it, and at one point I did get a little fever. I felt the fever come on and honestly it scared me at first. I started to feel really dizzy and my first thought was I was going to end up in the hospital. Clearly, my mindset isn't that of your average person when they get a fever! It was definitely a reminder for me to not take being healthy for granted, but also that this cancer stuff has a deeper affect on me than I may realize.

I still measure time in increments of scans. I have a couple of very fun things this summer (including seeing Harry Styles at Madison Square Garden!!!), and in my head I calculate how many scans I have to pass to feel confident I can be excited. I feel like I should be able to relax a little (and it definitely isn't as bad as it was at first), but scans will always bring out a sense of anxiety for me.

I still cannot eat avocado (plain, at least) or those brownie crisps. I still cannot handle the taste of ice. I still sometimes smell the hospital. I finally bought a plastic bin that I have simply labeled “2015”. Everything I wore or that reminds me of that year goes in the bin. For some reason I couldn’t get rid of it, so for now, this will do. 

I think as things become more normal again, processing cancer becomes different. I am doing my best to move on (in a way) but also allow myself to process what happened. It still feels completely unbelievable that this happened to me.

On a more "updateful" note, I am about to start my last semester of school (finally!). I will be full time student teaching and I am SO excited! It has been a long time coming :). I have been keeping busy with school, work, and lots of babysitting. I will have scans at the end of January. This is my first set since my doctor moved me to 6 month increments, so it has been awhile!

Some of you may have seen that I was lucky enough to attend the AYA Global Cancer Congress, which was hosted by Teen Cancer America in Atlanta at the beginning of December. I was extremely thankful for the opportunity to attend! I am working on writing up something about it to share with them, so will be sure to share it with you too! It was an amazing experience.

I am also in the process of becoming a volunteer for the hospital system where I was treated (and yes it is a PROCESS. I started in October and am still not through). I am hopeful I will be cleared soon and can begin working with the doctors in charge of the AYA program they have going. It is fairly new and they are inviting me in as a patient advocate for the program. I am SOOOO excited about this. There is lots of room for growth, but things are in motion and I am thrilled to get to be a part of it!

All in all, things are moving forward, as I wanted them to two years ago. I remember when the nurse coordinator came to visit me in the hospital one of my last inpatient stays she said that next year at this time I would be celebrating a year off treatment. Here we are, two years later! It is just amazing to me that I went through what I did and am where I am now. I know it sounds cheesy, but I continue to be amazed by all the continued love and support. My story is not unique (unfortunately), and I could only hope that everyone has the support that I still do. I thank you from the bottom of my heart!

I will close with a fundraiser I started to celebrate two years off chemo. I chose Teen Cancer America as the recipient, for obvious reasons! They are doing amazing things in the world of AYA (adolescent/young adult) cancer and have given me a lot of cool opportunities. I know they use all donations to do great things! No pressure, but thought I would leave it here if you are interested!

https://www.crowdrise.com/ho-ho-ho-im-two-years-off-chemo/fundraiser/samanthastacy

I hope you all had a great holiday! I wish you all a happy and HEALTHY 2018!


Me (and my friends) on 12/22...Two Years off chemo!

Old, New, and in Between

Last week, I had to go to Columbia for a conference with my class.

It was the first time I had spent any significant amount of time there since everything happened. I had done quick trips to get my stuff, move apartments, and I think I had one quick visit with friends.

While we weren't on campus (or even anywhere near it) we did end up driving around areas that were familiar to me.

I am going to try to put into words what I felt, but unless you can directly relate, you may not understand all the emotions I had.

I felt like two different pieces of my life were crashing together. The old me was blending in with the new me, and it was weird.

It was weird, but it was also kind of sad. I have all these vivid, tangible memories of my time in Columbia, so driving around and seeing places I used to go and talking about roads I used to drive on all the time was sad. We drove by places my friends and I would go have dinner or go shopping, and I got so nostalgic for those memories that it hurt. It was like I almost couldn't believe that my old life existed until I was smack dab in the middle of it.

Things have changed there. My friends all graduated and are no longer there, and there are things I now don't recognize. It made me sad for all that I missed. I feel like that part of my old life was never really closed up. I was stolen away, but never got any closure there. It was hard to be in familiar areas, I am not going to lie. All of the places seemed so familiar that it felt like if I closed my eyes hard enough, I could be right back there. I recognized all the places, but I did not recognize my life.

On the other hand, I was there with my class and we did have a good time. I am thankful for the opportunity to create new memories in an old place. I think I will forever mourn what I lost, though. I miss what I had and I miss what I could have had there.

This got me thinking, too, about how when people ask me why I left USC or when I tell people I had cancer. They often reply with something like "I am so sorry" and I know that is coming with love and true sorrow (because hello...cancer at 20), but I am never quite sure how to reply. I sometimes say something like "I mean it is okay" (as if I need to make them feel better for what happened to me!),  but it is NOT. It is NOT okay that I had cancer. It is not okay that this happened to me. I am still not okay with it.

I don't know what the answer is there, because I don't know what else you say or what else I should say. I don't want people to stop asking though. PLEASE ask me. I fear that people think I don't like talking about it so they don't ask questions, but I am happy to talk about it. I am not ashamed or scared to talk about it. I am proud of my story and want to share.

I do struggle with talking about it, as I believe I have mentioned before. I do not want to only talk about cancer or talk about it too much. I do not want to make people uncomfortable (but also I spent a year being much more uncomfortable than you will be hearing me talk about it). I know most people cannot relate to cancer, but this is just a part of my life. Like people talk about graduations, vacations, even minor illnesses, I can talk about cancer. It is not super common, but that is all the more reason I want to talk about it!

I feel like my old life and my new life are so separate that I guess it is weird for me to have them come together.  It is still weird to me that all of the people I have met since I had cancer never knew me before and that those that have known me awhile knew the old me too. I  blogged here before about molding all these versions of myself into one semi-functioning person, and I guess I am still trying to do just that.




And because you need to laugh, always, no matter what, writing this post made me think of this quote from my favorite show, Modern Family. Although my circumstances are a bit different (and less fun) than living a double live, I wish I thrived on it a little bit more than I do, too :).
 “I wish I were one of those people who thrives on the danger of leading a double life. You know, Bruce Wayne, Peter Parker, Hannah Montana.”- Phil Dunphy



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I do not want to take away from the top of this post, but also want to thank you for all your continued love and support. I may not be in the trenches of cancer anymore, but I am still affected by it everyday, so I truly appreciate all the love and support you still send to me!

Timing

During cancer treatment, and for some time after, you live minute by minute. Not even day by day because things can change so quickly. One minute you may be fine and the next minute you develop a fever which puts you on hospital watch. It is so incredibly draining to live this way, but it is just what you do and you adjust.

Once treatment is over, you being being able to see in increments of your scans. I think I lived 3 months by 3 months that first year. It got slightly better this past year, but even now when I think of future plans or buy concert tickets, I think of how many scans I have to "pass" before the event happens.

It was really hard for me to look ahead for a long time. It wasn't that the future scared me, but more so that I was so used to living minute by minute that I forgot what it is like to be able to look ahead.

I wonder, daily, if people expect me to have moved on by now. When I bring up something that happened while I was sick or talk about it, I do not want people to think I am doing it for sympathy or attention ('cus trust me, I am not).

What I want people to understand is that I lived minute by minute for a year. I was so in the moment that I never considered looking ahead. Now that I am at 6 month scan increments and have resumed some version of "normal", I am finally seeing the impact cancer had on my life. That I will have this experience and its side effects forever. My leg will always click. My scars are there forever. I will always remember being so sick and tired. I lost out on part of my college experience that I will never get back. Things moved on without me. My entire future will now look different than I had originally expected it to. All the things I had pictured at one point will be affected by cancer. It is now like a shadow over my life.

Cancer is a traumatic experience, especially when you are young. I think everyone would agree with that. I think I tend to brush over giving it credit for being so awful. It is easy for me to do that because it just seems like it was never made to be a big deal. From the beginning it was "we found it, we will get it, and you'll be fine". I am SO thankful for that. I wouldn't go back and change it. What I need to recognize now, though, is that my story is not any less meaningful than anyone else's. I had CANCER. And it is okay that I am not over it.

I know that other people have moved on. I get it. I really wish I could. I want you to know that while yes things are going well and I no longer look sick, what you don't see, is how long it takes me to phrase what I post. You don't see how nervous I get the day of my doctors appointments. You don't see that I struggle over what to wear to these appointments because I don't want a cute outfit to be ruined by bad news. You don't see how I second guess every facial expression of every person I come in contact with. You don't see how I start comparing scenarios in my head (at diagnosis I had just done __ or was about to __ and then compare it with where I am now). You don't see how something as simple as the weather that day or a particular smell immediately brings me back to that time. I don't actually believe this stuff, but I also can't not. I struggle so much between getting comfortable with the idea that things are okay because I don't want to just assume that and have them not be. It is SO hard. I am not sure people understand how hard scan days and the waiting period are, even still.

Cancer changed the way my world works. 2 1/2 years post diagnosis, and I feel like I am just waking up the impact it left. New things reveal themselves to me everyday and my first thought is always "that is because of cancer" or "cancer did that". It drains me to think about living like this for the rest of my life (which I am thankful to get to live and blah blah blah....what other 22 year old has to justify complaining with that?).

I am getting some good opportunities because of cancer (and also got a wave from Ed Sheeran at his concert--thank you cancer card--now if anyone can help a girl out with Harry Styles......) . I had a moment in the car the other day where it almost occurred to me that I was thankful for the experience. I quickly decided that I am still not thankful for cancer. I will never understand why this happened to me. I still wish it didn't. That, however, does not mean that I can't be okay with how I am making the best of it. I got handed a really shitty card, and I am happy to see some good come of it. I can be doing these things without being thankful for cancer.


Almost two years off treatment, and things are okay. I am slowly picking up the pieces, but there are still lots of pieces out there I am sure I will not find till later. I am slowly accepting that this is just a slow process. The expectation out there is that once you are done, you are done. It is not at all like that, and I so want people to understand that. My entire life changed forever in one minute, and it would be crazy to expect me to move on so quickly.

I am realizing now that I will never be able to look forward, without first looking back. That is just how life after cancer works, I continue to discover.

Finding Balance

I should be graduating from college on Saturday.



I am not.


This time of year brings a lot of emotions back to the surface for me. I think knowing that two years ago at this time I was starting chemo and really entering that "phase" of this road brings back a lot of memories for me. Even the weather and general "feeling" of this time of the year affect it. It is a bit less powerful than it was last year, but it is still there.

I think it doesn't help that I "should" be graduating on Saturday. I know it isn't a big deal and blah blah blah, but it still sucks. It sucks because it was something that was totally out of my control. I DID everything I could. I went to class, did my homework, made good grades. I can't really explain it, other than it is not fair and I am not all that happy about it. I am so happy and excited for my friends and I do like my school now, but it is still hard and I am mourning what should have been a little extra lately.

I am continually trying to figure out how to mold all 3 versions of myself into one semi-functioning person. I am finding this especially hard lately. I am feeling more like my pre-cancer self, but I have to balance where to put all the "stuff" that came along with cancer. I may be a "regular" person again, but I have scars, experiences, and knowledge that weren't there before (and are important). I don't want to forget about my experience, but I also do not want to only be known for being the girl who had cancer.

Cancer left me with a lot of new emotions and feelings. I have some new anxieties (I had to drive to something near the hospital a few days ago and my heart started racing just getting off the exit) and some new fears. These feelings and emotions come and go, but one emotion that has been more present lately is guilt.

A lot of you probably know (or saw on Facebook) that I hit my sideview mirror backing out of the garage a few weeks ago. I was pretty bummed about it, seeing as I am generally a careful person. We called the dealer to get an estimate, so I was prepared to spend that amount of money on it. When I took it into the dealer, they told me it was worse than they thought (is it ever not?) and they gave me a new total that was over 2x the original amount.

I cried. Right there in the Hyundai dealership, I burst into tears.

And then I hated myself for crying.

Was I seriously crying over fixing a CAR? I tried to get some perspective into my brain, but it still didn't stop the tears. People have real problems and I am crying about having to shell out a little extra to fix my car. Two years ago, I would have willingly hit my mirror on the garage just to have that be my biggest problem. I felt so bad for crying over something that is easily fixable and not a big deal at all (and although I didn't want to spend the money on the car, I did indeed have it).

People, including the lady who was helping me at the car place, told me I was not the first person to cry. That it is okay that I still cry about normal people problems. I just feel like I know better and therefore it shouldn't bother me as much.

I hate that it does, but as I was saying before, how do I balance all I know with being a regular person?? I need to be able to be who I was, but also be aware of what I know and I am finding that to be extremely difficult. I shouldn't feel guilty about these things, but I do.

Everything I do, I have an added perspective of, which is great, mostly. I am thankful and aware for the little things, but sometimes that prevents me from just being okay with being frustrated or upset. It is tough figuring out exactly where I feel comfortable.



On a more personal note, my semester just ended and I am officially done with my 3rd year of college. I was thinking about it and this was only really the second year I got to finish "officially". I now have to begin fighting my life scholarship for next year, so wish me luck with that!

Things are going well and I am preparing to have a summer that I wanted so badly two years ago. I have been in a thing lately with reading my old posts and looking at pictures. I really wish I had documented more. I think the further I get from it, the more I need to really absorb it to know that it was real and that it happened.

Other than that, I have scans again in July, and have otherwise just been keeping busy. The last few weeks of school were super intense, and I am looking forward to a relatively relaxing summer. I don't have much planned other than some nannying, hopefully some fun trips with friends, and plotting how I can meet Harry Styles. He (finally) went solo and I am DETERMINED that this is my chance to finally meet him. He's playing small venues, so at this point I'm just hoping to get tickets, but I have no shame at all about pulling out the cancer card if I need it. It is finally hot and humid here, so I am trying to figure out what to do with my hair at the length it is at in that weather. I like the length, but it isn't all the same length yet, so it is a struggle.

I guess I'll end there for now. It is crazy to look back on two years ago and compare it with now. I truly am very thankful to be here, even if some days are still hard. Please keep sweet Bella (local osteosarcoma fighter) in your thoughts and prayers as she is beginning some new immunotherapy and radiation treatments.

Thanks for all the continued love and support. It still means the world!

Cancer's Mark...Two Years Later

Tomorrow is two years.

Two years since I found out my subtle knee "pain" was actually cancer. Two years since I lost my normal.

That means that March 15 is the last day the last two years where I did not think about cancer at all. It will forever be the last day I had of my previous "normal".

I found my old backpack and planner a few weeks ago. It got tossed in the basement in the chaos of everything and I hadn't seen it in two years. I didn't realize the planner was still in it. I flipped through it and it made me sad. I had all the dates for the fall semester that year and all the dates for the spring semester that I never finished. Most haunting of all though, was where I had written "doctors appointment 8:15". Never in a million years would I have ever thought that appointment would hold as much weight as it does now.

I wasn't as anxious about the approaching date this year. Am I thrilled to see that date on the calendar? Not really, but compared to last year at this time, I am in a much better place. I know it is important to mark the day somehow, but part of me kind of just wants to ignore it this year.

I think it is because I have settled in a bit to this "new" normal. While it is not where I expected to be, I am happy. I like my school and my job. I have a routine and my days are busy. I honestly have less time to focus on the date this year.

I know I kind of let on to it, but last year was an extremely hard year for me. Coming off of treatment and just feeling in "transition" for a year was not easy. I struggled a lot with a lot of things. It wasn't until my scans last October (my doctor called those my 1 year scans) that I really felt some of my "old" normal return. For some reason, it does a lot for me mentally to be able to put this experience in years rather than months. I almost did not realize how hard last year was until this year started.

I am so thankful to be where I am two years post diagnosis. I am on no medications, my scans from February were clean and if my August scans are clean I will get to go to 6 month increments, my hair finally feels like hair again (although I am waiting for the day I can put it ALL in a ponytail), I am back to basically full leg function, I could keep going but you get it. Back when this first started my mom said that everyday that gets further from D-Day will get better. I am so thankful I have found that to be true.

With my last set of scans, I wasn't as anxious as I was annoyed to get back into that mode. I do not live in cancer mode anymore so having to go back there is annoying. I have to figure out how to schedule scans in between my already insane schedule. It is just very inconvenient now, and I am jealous that not everyone has to deal with this.

All that said, I want to emphasize that cancer is not gone from my life.

I may not be thinking about it as much as I once did, but it does cross my mind everyday. It literally altered the course of my life. I know for a fact if it had not happened, I would still be at USC and I would be graduating in May. I am where I am because of cancer. I am slowly coming to accept that (not easily).

I still have pain in my leg. If I sit with it bent too long, it hurts to straighten it. It "clicks" when I bend it back and forth or walk up the stairs. I do not say this to sound ungrateful, but it is not a "normal" leg. I am so thankful to be able to function regularly and that it wasn't worse, but sometimes it is still annoying. I am not sure if these things will continue to get better or if it is what it is at this point. The skin to the left of my scar is numb (so my lower thigh). Not a big deal, but it is still a mark cancer left.

I have not talked much about this (I did post it on my FB page a few weeks ago with scan results), but I have noticed some things about my hearing this past year. At first I didn't think much of it, but once I got back to school and work I noticed it more consistently. It wasn't affecting my daily life or regular conversations, but it was still something I picked up on. I noticed that I could sometimes hear people, but couldn't understand what they were saying. I get really frustrated when the TV is on and people are talking. Phone conversations can be difficult and sometimes things just don't sound as clear to me as they once did.

I brought up these concerns to my oncologist at our last appointment and he referred me to an audiologist. He said he didn't think I received enough to have major damage, but it was still worth checking out.

I went to the audiologist this afternoon and had a hearing test, and while the results are far from awful, cancer left its mark there too.

I have high frequency hearing loss. She said this is very common with patients who received Cisplatin (a kind of chemo I got). She said this is why I was experiencing all those things I mentioned above. I am far from needing hear aids and I am normal in every other range, but there is quite a drop in my high frequency. She said she has seen worse so I shouldn't worry, but I will have annual appointments for the next couple of years.

I am glad I wasn't going crazy and there is a justified reason for it, but it was still kind of sad to hear. I know that this is hardly a major problem and I am so thankful it is not worse, but it still kind of sucks. I mentioned that I work with kids a lot and sometimes I have to ask them to repeat themselves and she said that makes sense as kids can fall into that high frequency range where I struggle. I spend a ton of time with kids and am going to be a teacher so that kind of sucked to hear, if I am being honest.

So totally not the end of the world, and in the scheme of life it is nothing, but it is just another thing that cancer caused. Cancer doesn't just end when treatment does...I will be dealing with these side effects for the rest of my life.

Not to end on an unhappy note, I will just say thank you so much for the all the love and support these last two years. Part of me cannot believe it has been two years and another part of me cannot believe it happened at all! I am so thankful tomorrow will be March 16, 2017. I am hoping for a good day! Throw a little kindness into the world tomorrow...you never know who might need it.

I want to share two things I wrote for Teen Cancer America that they shared. The first one was back in November/December and the second one was the beginning of February. I hope you will read, share, and support TCA however you can! They are truly doing awesome things.

https://www.teencanceramerica.org/on-being-thankful/

https://www.teencanceramerica.org/the-lost-year/ (this is one of my favorite things I ever wrote)