Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.
So, here's how I feel today, which is:
12 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).
19 weeks after my last radiation treatment.
And hopefully I've had my FINAL, round of "treatment". KNOCK. ON. WOOD.
Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.
Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.
Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be compiling things written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. Most of which feels like it has no real focus or reason it just explodes out. Anxiety has plagued my life but kept in check didn't get the better of me, to having full-blown panic attacks. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. I promise.
Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.
Sore: Well, that has to be a given, right? I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But It's still all up to me to do it and pretty much nothing was going to stop me. Just don't make me laugh.
Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into osteoarthritis and it's not any fun. Chemo-induced arthritis of the bones hits you like a ton of bricks and never lets up. And it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the next "round of oil" and we will discuss if there is any way to manage these MOST ANNOYING symptoms.
Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and osteoarthritis, so not sure who's at fault here). I would say that it's gotten worse since ending chemo, and 3:00-4:00am is my new wake up, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.
Misc: I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is any grey now in it, so possibly one perk?!
Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have another scan and blood work scheduled for April 10th and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...
Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!
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