Long Story

I don’t write anymore. Not because I don’t want to but because every time I think about what to write, it just becomes sad and frustrating.

To clear things up, this is what has been happening cancer-wise:

I have been declared in remission on February 8. Yes, I am in remission. Am I happy about it? Yes and no. Remission brings on a whole new set of worries and changes to adjust to. Remission doesn’t mean treatments and doctor’s appointments are over. I still had my stem cell transplant after remission on March 1. I stayed in the hospital for a solid month. Then, I had the typical 100-day post-transplant isolation. Remission doesn’t mean I can do all the things I used to  be able to do. Remission doesn’t mean you’re done with taking a million medications everyday and dealing with all these unknown side effects. I still get nauseous. I’m still in pain. My legs are so weak, I can barely walk on my own. I’m so tired, all the time. Just putting away dishes makes me so exhausted. And why do we cook standing up? Can I get a chair for my stove? Seriously. Or an on call masseuse? I feel so useless all the time.

The biggest fear is reoccurrence. I’m only in remission. I am not cured, and I’m not sure that day will ever come. So can I really cross off #76 on the bucket list? I don’t feel like I can just yet. When I get sick and I have a cough, I wonder. When I have a sharp pain in my spine, I wonder. I find myself unconsciously checking my lymph nodes around my neck and underarms.

My original Winship transplant oncologist left the practice. I was the last patient he sent to transplant before leaving. So my new transplant oncologist sucks. Since I’ve been assigned to her in March, I’ve only seen her twice. The first time was a 2 minute introduction. She never came to see me in the hospital or check in on any of my follow ups. She changed my treatment schedule without notifying me. I showed up to the clinic, had my blood drawn and port accessed. I was sitting in the chemo chair and given pre-meds (Tylenol and Benadryl). That’s when the nurse told me that I wasn’t supposed to get treatment that day. They just sent me home after giving me drowsy meds. Thanks, Emory.

I’m currently on what the cancer community calls maintenance treatment since my Hodgkins was so aggressive. I’m done with chemo, radiation, etc. My maintenance drug, brentuximab, is an immunotherapy treatment, which I was on before. My doctor wants to do 12 treatments, once every four weeks. That’s another YEAR of treatment. However, if the side effects get too bad, they’ll reduce the dose or stop the treatments. It’s just a precaution to make sure everything is gone.

My skin GVHD (graft vs. host disease) has now been found to be chronic. I have a bunch of red spots all over my body. It looks like I’m a leper. At least the ones on my face have faded pretty nicely. But, my face! I’ve been on high does steroids because of my GVHD. Now, I have moon face. It’s so swollen, puffy, and round. I look horrible. My hair is growing back nicely though. Hopefully, I’ll have a good amount by October for my sister’s wedding. I’m glad it’s only skin GVHD though. GI GVHD sucked and I didn’t even have that bad of a bout with it so I can’t imagine having it chronically.

The side effects of all the meds I’m on are getting crazy. I started taking something for the GVHD and that triggered some side effect. They prescribed me some other medication for those side effects. Those meds give you new side effects, so they continue to prescribe more medication for that. Along with the nausea, pain, and fatigue, my body has become so weak. I can barely lift anything. I can barely walk. My hands won’t stop shaking. Even my voice is shaking. My legs and feet are so tingly, I can barely feel them sometimes. I can’t hold utensils or write. Even typing is difficult. So many typos. Don’t ask me to write anything or fill out any forms. Some days, I wake up and I feel alright. Some days, I just want to lay in bed all day. You just never know. I wish the side effects were more predictable. This too shall pass.

Ughhhh so that’s what’s going on with that. Non-cancer news:

Wedding planning has been going very smoothly. I guess planning 3 national sorority conventions gave me some experience. We’ve secured the venue, catering, planner, floral designer, photographer, videographer, DJ, photo booth, hair and makeup, and wedding gown. I guess losing your job, living in the hospital, and being in isolation for 100 days really has its perks. Since most of the big things are finished, I’m going to take a break to focus on my sister’s wedding coming up in October!

I am going stir crazy not being able to work. Usually I would Cricut something, but my hands are so shaky. I can’t place the vinyl with this hand tremors. Now, I’m trying to find some local nonprofits to get connected with. There are no resources for young adult cancer survivors in Northwest Georgia. Maybe because there are no young adult cancer survivors here, let alone young adults in general. There are a lot of cancer resources here, but they’re geared toward older cancer survivors. And again, my life revolves around cancer now.

I suppose that’s all. It’s so sad how my cancer life updates are longer. It’s probably because there’s more to complain about.

Now for my rant.

I’ve been thinking about this with the political atmosphere lately. Then, Independence Day came. Then, I had a really good discussion with my fellow MPA alum. All over the news, all over social media, you can’t not see it. Everyone is sharing stories, their opinions. There are so many sides to hear from. Everything is getting distorted and I feel like the public is more confused than ever. To really stay up to date, you have to scour several reputable news sources to really figure out my own opinions.

Honestly, I don’t care who you like, who you don’t like, what articles you post from tabloid websites. Do you as long as you exercise your right to vote as well. The right to vote is not something that everyone has, yet we don’t take advantage of it. We are so lucky. This is your voice in a country of millions. Your voice, your choice. And not just federal elections every four years. Yes, that is a good start, but think about it. Do you see the President everyday? No. If you don’t like something, can you call up the President? No. If you can though, let me know.

Local elections are where it’s at! Everything is local! Thanks for teaching me that, EP! Your local representatives are there for a reason. They are the ones that have to represent the needs of their constituency. Their job is to listen to you and your concerns. If they don’t, vote them out. If they do, vote for them to stay. JUST GO VOTE! Don’t make anymore excuses. This is your civic duty. Employers are required to give you time to go vote. Don’t blame it on your crappy boss. Early voting is literally weeks and weeks long, even held on weekends. Why is it that when I go to vote in a local election, the room is empty!? I went to vote and there were maybe three other people there. I was masked up, barely walking, hands so shaky I couldn’t fill out my forms. WHAT IS YOUR EXCUSE?! This has become such a pet peeve of mine. It’s a shame seeing people throw away such an amazing right that we have in this beautiful country of ours.

The End. Bye!

~SL

P.S. It’s not completely done yet, but check it out: www.justinandstephenie.com.

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