After sitting on a completed blog post for nearly a week, I finally just posted it today so lucky you (!), you’ll be getting a twofer (two for one). It seems whenever I create a post when everything is pretty much fine and dandy, it turns out, eh not so much. The other post from today (but written on Saturday) was all about the specific details of treatment and the day to day experiences but this morning I feel like I want to share something different. I went to edit that post to see if I could just add what has transpired in the last 5 days but so much has happened that it’d either be the longest post ever or not flow very well. We will just say that post is a medical update and this is an emotional update. This one’s a doozy so bear with me.
I feel like my attitude has changed a lot in the last week and I decided I can’t only blog when I’m feeling good and positive because that is not an accurate representation of what I’m truly going through and I want this blog to be as honest as possible. But, to preface this post, I will be referencing the previous entry throughout so click here if you want to be up to date.
I haven’t been able to sleep very well, especially this past week, due to the continuing mouth pain which seems to be consistently at a 7 or 8 out of 10. I’m not sure if it’s primarily the pain, lack of sleep, being stuck in a hospital room, steady stream of pain medications or all of the above but I am in a funk. This morning is particularly rough because a person in the room next to me did not make it. I know this probably happens daily in a hospital of this nature but it has really affected me. I pressed the nurse call bell thingy at 2:30am for more pain medications and she asked if the pain woke me up or the cleaning crew. I knew when my mom left last night that someone had passed due to the large family outside of the room who were hysterical but didn’t know for sure and would hate to make such a big assumption. I asked my nurse if they didn’t make it, she responded, ‘no honey, they didn’t.’ I immediately burst into tears. She consoled me and I said when will this sh*t end, the cancer and the pain. She didn’t have an answer. I then told her that she was such a blessing for doing this for a living and she responded that she wishes everyday that she is put out of a job. This is by no means the first time I’ve heard that.
For the last year, I’ve felt so lucky and so blessed to call myself a survivor, although that word, survivor, always made me feel uneasy since it was too soon to say for sure. I was right. Here I am again, back in this situation that is so much more than just a situation. It is life or death. Going through cancer the first time around I had the blissful naivety of I will beat this, no problem. I was so incredibly confident that I was going to kick this thing the first time and be done with it. While I am still positive I will overcome and have my game face on, it’s just different. My body and mind isn’t as strong as it has already been through all of this before, not to mention 5 rounds of chemotherapy. I knew how serious it was the first time around but at the same time, I didn’t understand or really believe the true seriousness of the situation. I really thought of it as a bump in the road for a few months and then back to normal life. Being diagnosed for the second time, you’re an old pro… But not in the good way. Yes, it has helped me be more prepared in what to bring to the hospital and what to expect, I have more patience being in a hospital room for a month and I am much better at being my own patient advocate but there’s also the grim realization that this worst case scenario is happening for the second time and the outcome could not be the same.
I’m not saying I’m not going to make it but I know that the odds are against me much more than the first time around. I made the mistake of looking up statistics and let’s just say I wish I didn’t. Yes, I will pursue the stem cell transplant and yes, it can still cure me. I do have a chance move on with my life once more and hopefully never have to do this ever again. But there’s that overwhelming thought of what if I have the worst case scenario of a worst case scenario.
Social media doesn’t help. It is super helpful when I do post things and get hundreds of likes and well wishes but it also stings every time someone gets married or engaged, someone gets pregnant or a job promotion, etc. It’s those little reminders that my life is on hold, once again. It’s not that I’m having FOMO (fear of missing out) but rather I’m missing out on precious time to be making my own memories. But I guess FOMO has something to do with it because I can tell you exactly how many weddings I’ll be missing, how many birthdays, baby showers, and the like I will not be able to attend. Heck, I’m even missing my 10 year reunion which is such a bummer and here people are complaining that it’s $65 for the ticket. Let’s stop being annoying and all buy our tickets so it is an awesome night and we show how badass our class was then and now. By the looks of most of you: the success in your jobs, vacations you go on, dinners you post on Instagram, I think y’all can afford it. Be so lucky you are healthy enough to be able to attend and show off how far you’ve come since high school. That’s the point isn’t it? LOL
Not only is the missing out part hard but the constant negativity on social media is exhausting (see example above) and I find myself losing empathy for people. Yes, it is struggle that they’re facing but most of it seems so mundane and miniscule. They have no idea what true pain or struggle looks like but then again, they do. You only know what you’ve experienced and if the worst day of your life is your car breaking down, a fight with your boyfriend/girlfriend or your kitchen countertop not coming in on time, then that really is your worst day because you don’t know any differently. I’m becoming envious of the naivety other people are able to have. The ability to truly believe that those issues are the absolute worst. I’ve had people compare their almost diagnosis to what I’m going through and I nearly giggle. Sorry, you almost had an issue. I’m losing a little bit of my free-ness or ability to empathize because I would do anything for some of those problems. There’s that old saying that if you threw your problems in a pile with everyone else’s, you’d be fighting to get yours back. I’m not too confident that I would at this point. My problems are a pretty big f’ing deal.
Being in agony consistently for 6 days straight due to the jaw pain and oral mucositis (yes, I finally got the mouth sores and they’re all in my mouth/throat) is really taking a toll on me emotionally. I’ve had a CT scan of the jaw/neck which came back negative so they can’t tell me why I’m in such terrible pain. Then yesterday, after taking a nap, I noticed I have random swelling to the inside of my left thigh near my groin. To the ultrasound department I go and it too comes back negative. They were thinking it was a blood clot and I even said to the nurse, I kind of wish it was because I don’t want to deal with another unknown issue. She didn’t disagree. The unknown is the worst. Everyday that I shower, I look at myself in the mirror and see a new bald spot. Yet another side effect of chemo. This whole post terrifies me because I’m not even in the worst part yet. I still have the stem cell transplant which is hands down going to be the hardest thing I will ever have to do.
But after bitching, moaning and crying this morning, I can guarantee you one thing, I will NOT become that negative person. That friend who you are unable to confide in about your problems because they seem too small. I will shake off this attitude and sadness and get back to being positive because it is the only way you survive this situation. I still have so much to be thankful for. Heck, everyday in my journal I write 3 new things that I’m grateful for and I never seem to run out things to mention. I needed this post to let it all out there. Release the negativity out of my mind and body and leave room for my positive outlook once more. I feel better already. I will laugh and cry with you and be there as a friend as so many of you have been there for me. I just really hope this puts your life into perspective as well and the next time you feel down, know that someone understands. Someone out there is feeling it too and regardless if it’s on a different level or scale, pain is pain, sadness is sadness, and if we all stop living behind the filters of social media and truly put ourselves out there, I believe we would all have so much more in common than the shallow surface people are only willing to share anymore. I can be just as guilty as the next person which is why I felt this post was necessary. It had to be said; I couldn’t keep living in my own angst. I truly believe that we become closer and more connected as humans when we are able to share our deepest and darkest fears and that’s just what I did today. Again at 5am. I really need to stop doing this and get some sleep!!
Thanks for reading. I hope this wasn’t a total downer and will allow us to be more open to eachother. I wish you all the happiness, love and success this world has to offer. Just make sure you don’t stand in your own way and do whatever it takes to make your dreams happen. At the end of the day, always choose happiness.
All my love,
PS – As always, here’s a quick link to my gofundme. I still have a long ways to go. Thanks for sharing!
PSS – Sorry if there are grammatical errors throughout. I’m too tired to edit 🙂