Some Real Talk

Thursday, November 8, 2018

In a little over a month, I will be three years off chemo. That sounds like both a long time and not very much time at all.

Some of you may be wondering why I am still here, writing. You may not understand, unless you yourself have a similar experience, why I haven't been able to "move on" yet. In a lot of ways, I have moved on.

After you finish treatment, there is a lot of talk about healing. Most of it, however, refers to healing of the physical kind. Your counts need to recover, all your systems have to recover, your cells recover, etc. It is the kind of recovery that being able to eat and not throwing up consistently allow for. What is not emphasized is the healing that has to take place mentally.

In my previous posts, I mentioned that my anxiety had picked up A LOT this year. By April, I had reached the point of wondering if I would ever be able to fall asleep without first experiencing some symptoms of anxiety ever again. I was desperate and just wanted to be able to SLEEP.

Right around that time, I believe I also previously mentioned, that I was able to find a therapist who has helped me TREMENDOUSLY in this area.

I have had a lot of realizations about things in my life, but some of the most poignant ones relate back to my time being sick. I had great support from friends and family, but having a non-biased third party able to help me sort through things has been exactly what I needed.

She frequently mentions the word trauma when it comes to what I have experienced. I honestly never gave it that title because it felt like an insult to people who have actually faced trauma. I have downplayed a lot of my experience and in return have not let myself heal emotionally. I thought I was doing the right thing by downplaying it and pushing the thoughts down, but I know now that doing that is a huge part of why my anxiety manifested the way it has.

I had been healing physically, but had very much neglected to even attempt to heal mentally. I am not sure I was aware that it was something I even needed to do.

I have sat in her office consistently once as week since August. I have processed memories and moments that stick out to me most from my experience. I have had to say them out loud, which is not something I have done before. I am a pretty private person when it comes to stuff like this (shocker to those of you that know me, I know). I prefer to keep things to myself. Going back through these events has not been easy or comfortable, but I totally understand why I needed to.

What I am working on now is figuring how much is too much. Obviously, I cannot erase cancer from my history. It is a part of me and I will (unfortunately) always carry that with me. What I have come to realize is that I might be carrying it too much. Cancer is part of me, yes, but it is not the only part of me. It is okay for me to let it go a little bit and not be so consuming.  It clouds up my head a little too much, and I think that is because for so long, it had to. Going through treatment it is all you focus on. Now that I am done and life is moving on, I really have to work on letting it be part of my past without carrying it into the future (in ways that are unhealthy for me).

I am still extremely passionate about AYA care and improving it for others. I am not looking to completely move on and never talk about cancer again. I just have to find the balance between using the experience for good and letting it totally take over my brain space.

I had an appointment this week, and at the end, I realized something big. Probably 6 out of 7 days a week for the last three years, I have replayed some of the most difficult memories I have from my cancer treatment in my head before I fell asleep (D-day, my surgery, etc). It occurred to me, after this appointment, that I haven't been doing that. I don't remember the last time those images came to my mind me before I went to sleep.

Yall. Maybe it is hard to understand how big that is but it is BIG. I feel like I am free from those memories in a way, I can look back at them like they are pictures in an album, not like I am reliving them. I could honestly cry just thinking about the relief I feel. A weight has been lifted off. I feel like I got a glimpse of the "me" before cancer that I wasn't sure was still there. It took a little digging to get there, but I DID and that is worth it to me.

I still have hard days and sad days and days where I am still mad this happened to me. I still feel anxious and worried at times. I have three years (and that's just the cancer stuff) of mental healing that needs to happen, but it is happening and I am experiencing what can happen when that kind of healing takes place.

So yes, my hair has grown back, my leg is healed, and I am able to eat, BUT  I can also fall asleep at night and not get dizzy and anxious when I recall particular memories. I AM healing mentally and getting to experience it first hand has been amazing.

I had just accepted that things were the way they were and that I would adjust. I thought it was all just part of this "new me" that I would just learn to live with.

I am so glad to have been proven wrong.

An Update of Sorts

Sunday, August 5, 2018

It has been awhile since I posted here. I had lunch with a friend I hadn't seen in too long a few days ago who said she missed my blog posts, so I was inspired to try to come up with something!

Actually, I have several posts in my drafts that I have started and just not liked the way the words were going, so my lack of posts isn't for lack of trying.

Anyway, I thought I would try again, so if you are reading this, then it was a success :).

2018 has been decent. Obviously, I have had worse years, but this year has had some real lows. For some reason, my anxiety picked up majorly this year (I think I mentioned this in my last post). You would think three years out that it wouldn't be as bad, but it has been worse this year. In April I found a great therapist who has been AMAZING in helping me. So while it is still present, it is MUCH improved.

There has been a lot of sadness this year. In February, we had to put Oreo, our beloved old dog down. It was his time, but it was very sudden and sad. I have had a lot of changes in my life these last few years and his death just felt like the end of an era, in a way. Maybe sounds crazy to you, but that's the only way I can put it.

Also in April, sweet Bella (who I believe I had mentioned here before...she was fellow Osteosarcoma warrior) passed away. Obviously, it hit me hard, but it hit me even harder than I expected it to. I was and am so very sad. It is one of those things I will just never understand. I think about her every day. I know she was younger than me, but she is truly one of my inspirations for getting through tough stuff but never being negative. I will never forget Bella and I hold her memory in my heart every day. I hope you will continue to keep her family in your thoughts and prayers, I know I do.

I know my feelings fall under the umbrella of survivor's guilt. To me, it was a realization of how fragile and unfair life can be. Why are we not outraged that children with SO much left to live are DYING because of a lack of research?! It just makes me so very sad.

In May, I (finally) did graduate from college! That was a big deal, but I couldn't help (still) but think it wasn't how or when I wanted it to be. I think being done with school has been hard because I realized that time in my life is over. My time at USC in Columbia always felt kind of unfinished, but knowing I am done with college just made me realize that the unfinished feeling is permanent. I will never get to go back to what I missed out on and I am still sad about it. I don't dwell on it and I am happy I was able to graduate. I graduated, got the degree, and made some good friends, so that is what counts! Unfortunately this big "teacher shortage" is not in the area where I am certified or where I live, so still no job. I am a little bummed, just because I felt like I already waited my extra year, but I have options so I will figure something out!

Honestly, I have been feeling pretty "stuck". I think this is sort of an age thing too. It just seems like so many people are moving forward with their lives and I just keep staying the same or going backward. I know I am young and have plenty of time for things to change, sometimes it is just hard! I feel like I haven't done or accomplished as much as I see other people doing. When I say this to people, their response is always "but you beat CANCER" and like yeah thats an accomplishment, but I don't feel like I can take credit for it. I got lucky, really. I am lucky to live in an area with amazing doctors and hospitals. I am lucky I could afford to see them and get the help I needed. I am lucky the drugs worked the way they should have. It doesn't feel like an accomplishment in the normal sense because I don't feel like I did anything (besides get to be miserably sick for a whole year). It may not make sense to others, but that is how it feels to me.

I had my first appointment yesterday with a new primary care doctor. I haven't had a non cancer related check up in like four years, so it was time! I had to fill out all that new patient paperwork, and one of the sheets gave me ten spaces and asked me to list any hospitalizations or surgeries I have had. There was no way I could do that, so I had to summarize, but it was weird for me. I used to be the patient that had no surgeries, hospital stays, etc. I had to be a little sad when I realized that will never be me again. I will always have this complicated medical background. Even three years later, little unexpected things like that still get me. I am thankful to be at the point where I can see a regular doctor for regular things, though!

I don't want this post to seem all negative, because despite the hard stuff, there has been good stuff too.

Some happy this summer was getting to see a concert at Madison Square Garden! I got to see Harry perform his second show there and it was amazing! We had great seats, and I would literally listen to Harry Styles read the dictionary, so his show was so good! As someone who has gone to a fair number of concerts, MSG really is a whole separate experience. I will forever be thankful I got the chance to go experience a show there.

I have been working a lot with the AYA (adolescent/young adult) cancer team at Greenville Health System to get things moving there. The doctor in charge is great and I think things are moving in the right direction. They put together this advisory board and have a plan, so I am VERY excited to be a part of it!

I have had some fun trips and good times with friends, too. I think there is this weird notion out in the universe that one can hit their "quota" on bad things happening, and after that, things should automatically turn around. I hate to say it, but I just don't think that is true. I know too many people and instances to think that anymore. I think we just have accept that life is unpredictable and embrace it when things are stable and calm. It doesn't do any good to stress about what is coming, whether it be good or bad. I am trying to do more of that!

If you have read this far, thank you for your continued love and support. I have scans tomorrow (Monday the 5th) then will see my doctor Thursday afternoon. I also see my surgeon for my annual appointment on Friday. Of course, any good thoughts, prayers, etc you want to send my way are appreciated. It is weird, I no longer get super stressed or anxious before scans like I used to. My feelings this go round are more about anger. Anger that I have to deal with this at all. Anger that I have to get back in that "mode" for a week. It really just sucks!

I hope this post didn't seem to negative! Writing is an outlet for me, where I can process thoughts, so I think that is why it comes out so differently than my regular conversations. Life really is good and I am grateful.

Thank you so much for your continued love and support! I hope that you have all enjoyed your summer!

Some Thoughts on Three Years

Thursday, March 15, 2018

On March 16, it'll have been three years since I ended up sitting at my orthopedic oncologist's office being told that my knee pain was actually bone cancer. Some days, I still cannot believe that it happened at all, let alone three years ago.

My life now is basically back to "normal". It is different than the life I had three years ago, but I have a new normal. It is a good normal, and I really try not to take it for granted.

However, even three years later, I am still bitter about missing out on things. My life is "normal" and to those who look in, it doesn't appear much is different from any other 23 year old. Most days, I do not notice the differences, but they are there. I think it is hard for me to face them because it brings back the fact that I had cancer.

My hair has finally evened out, I only see my doctor twice a year, and I am not in any daily pain. I think I am finally starting to just accept that my life is and will always be different. And that really really sucks.

The honest truth of it is, my life IS different. That fact is not something I can ignore. That has not been an easy realization. I see my friends and people my age doing things people in their 20s do, and I still just feel so foreign from that. I feel like in some way I am trying to make up the lost time, but am slowly realizing that I can't make it up. The world has moved on and I have to, too. I won't gain back those lost experiences or get the chance to redo what I missed. I can only take what I have now and go forward.

I try not to let things get in the way of my regular life but it is so hard. I still live my life in the increments of my scans. I constantly have something big and somewhat scary looming in the distance, and sometimes it is just exhausting.

It is definitely better than it was in years past, but it is ALWAYS there. My last scans were clear, thankfully. The nurse who performed my bone scan gave us a good freak out when she asked if I had hit my right rib on something because she saw some uptake on the scan. She assured me it was probably nothing, but that she was going to take some extra pictures just to be safe. Y'all I cannot put into WORDS how terrified I became. It didn't help that I had to wait a week and a half to see my doctor. I had a real panic attack one night, out of was my first one I have ever had (even 3 years later, I am still having firsts). I got back in "that" place so easily. I was embracing everyday of my normal routine because I was so scared to lose it. Thankfully my doctor assured us all is well (and he was kind of pissed that the nurse doing the scan said anything). He did not even see what she was talking about (neither did the radiologist), and he said it was probably just a shadow or something. Not at ALL a concern. I was half convinced he would want do further testing, so I was THRILLED it was literally nothing at all.

In that week and a half with that in my head, I still had to function as a normal person. I couldn't let my teaching be affected by stuff going on in my daily life. I so hate that on top of the stresses of anyone else my age, I have to worry about cancer. I hate it so much. I have wondered if it will prevent people from wanting to hire me or even get to know me. I hate cancer so much. Your 20s are supposed to be relatively carefree, but I will never have that.

March always brings out these feelings for me. The days leading up to D-Day are hard. I think of how I had no idea what was coming. They are never fun days. Each year has gotten better, but I still do not look forward to the day.

The Thursday before Spring break back in 2015, I had my advisement for the next semester. I can SO CLEARLY remember that appointment. It was raining, my classes had been canceled that day, and I had to drive to campus for the 5 minute advisement appointment. The power had gone out or something and I ended up getting stuck in the parking garage for longer than I was at advisement! The other day, when putting on my raincoat, I realized the pink pen I used at that appointment and a sheet of paper I got are still in the pocket from that day. Part of me wants to take it out because it hurts, but the other part of me is leaving it because it is a small piece of life still in place from before.

I am slowly coming around to the idea that the past is the past, and it is okay for me to put cancer in the past. It makes me nervous and all kinds of other feelings to feel like I can officially do that, but I need to give myself permission to acknowledge that it happened and truly move on from it.

As for where I am three years later?

I am FINALLY going to graduate in May! I am just starting the job hunt and although everyone keeps saying there is a teacher shortage, that is not what I have found to be the case! I know I will find something and have time, so I am not stressing yet!

I have been doing a fair amount for and with TCA. I never posted about the Global Congress like I wanted to, but it was such an incredible experience. Considering three years ago I had no idea AYA cancer was acknowledged by people at all, it was AMAZING to be in a room with people from all over the world dedicated solely to AYA cancer patients.

I am FINALLY in with the GHS AYA team! I am thrilled to be a part of it. I am on their "team" as a patient advocate and am SO looking forward to getting to focus more of my time on this cause this summer. It is so important to me, and I think change is definitely going to happen!

Physically, I am pretty much normal. My leg still clicks and I can definitely always tell that it is different, but I am on my feet the majority of the day everyday, and so far, no problems. My hair is finally evened out and all of it goes into a pony tail! Honestly, no complaints there.

Emotionally? Things are not as "normal". Cancer is a huge event at any age, but at 20 it is just so different. Most days, I am fine, but some days it is still a huge part of what I think about before I go to sleep. I replay events in my head or just think about how the heck this even happened to me. I think I am still in disbelief that I made it through that year and am where I am. I still think about cancer everyday.

There's this fun thing called survivor's guilt (please note my sarcasm), which I have read about, but am currently experiencing. It is hard. No one has any answers of why some people do well and others don't, but I think of those (close to me and others) who don't get as "easy" an experience as me. I always think of a quote from the movie Dunkirk (which is obviously on a way different topic), but at the end, Harry Styles' character says that "survival isn't fair". It just isn't. I In life, in cancer, in war. I feel like there's just nothing more to say than that. I am just broken for so many people. Treatment causes so much suffering and to not have the outcome you want is just unspeakable. Sometimes I feel guilty about even complaining because I know things could have been so much different. I look at other people's experiences and don't even want to mention mine because I feel like mine doesn't even compare to what some people experience.

As I reflect on 3 years since what was one of the worst days of my life, I am so incredibly thankful to be where I am. Things are not perfect. I have had a TON of hard days and changes (related to cancer and not). I always like the months of January and February because they don't hold any cancer memories (other than scans). I have had some anxiety leading up to tomorrow just thinking about how three years ago I had no idea how much things were going to change the next day. I still remember so many details from that day. Where I was standing when the doctor called, what I said to my friends, etc. It breaks my heart to replay it in my head. It feels like I am watching a movie where I know something the character doesn't and you just want to tell the character to turn around. I was talking to my friends about it a few weeks ago, and they were telling me their memories of that day. It made me realized that I do not think we have ever talked about how that day affected their lives too. I was also thinking about all the love, support, and gifts I got from those of you. I hate that I feel like I slacked in my thank yous, but please know how much I still love and appreciate all that was done for me.

I cannot say I am looking forward to the memories tomorrow will bring, but I cannot stop the day from coming. I am thankful that it is 3 years later and that I will get to wake up tomorrow, head to the kindergarten class I am student teaching in, and just have a "normal" day. The normal I wanted so badly to return to 3 years ago.

Thank you so much for all the continued love and support. It means the world that people still care. I honestly have no idea how we made it through this experience, and I know it wouldn't have been possible without all the love and support we feel from so many of you!

All the love to you!