Cancer Sucks Update #12- Why aren’t you back to normal?

Do You Even HAVE Cancer Anymore?

This might be just a guess, but I’d be willing to bet I’m not the first cancer survivor to feel lost during their fight. I’d think it is to be expected after all of the fight, loss, and change that happens during the journey. But I do wonder, how many others out there have been DOUBTED during their treatments or recovery? This is a genuine question. I assume I can’t be the only one, but at the same time, am wondering how normal these questions are? I’ve heard these questions and comments a multitude of times from the people closest to me in my life. 

    • What pain do you even have anymore?
    • Why are you still so tired?
    • Sometimes it seems like you’re just overdramatizing the pain.
    • Your actions are similar to an addict: Faking pain to keep the prescriptions coming?
    • Why are you still on those pills?
    • Why can’t you just take different pills?
    • Shouldn’t you be off your pills by now?
    • You’re not doing enough at home, why don’t you just…
    • Why aren’t you back to normal yet?

I hardly know how to react to the comments, much less get them to stop swirling and echoing inside my head. I’ve been called a monster from those who never visit, accused of faking and overdramatizing my pain or symptoms, and told consistently “don’t take it personal” regarding my concerns. Am I the only one?

So, do I have cancer anymore?

I’d love to tell you NO, and if I did, theoretically I’d be correct. I am in remission, and my CA-125 numbers (tumor markers) are remaining in the normal range. That said, I’m still on maintenance chemotherapy every three weeks, and I believe it will remain that way for a minimum of the next four years.

Why aren’t I back to normal yet?

Well, for now, my old “normal” is gone. Thanks to the chemo, I still get icky during certain times each 3-week period. Thanks to the ickies and the permanent nerve damage in my stomach from the surgery, I can’t handle full days of anything anymore. Without pain meds, my stomach pains are quite uncomfortable. But with pain meds, comes the side effect of all-over bone pain, plus the fun accusations of abuse from the ill-informed. (But, ill-informed or not, it still cuts me to the core and I refuse to be labeled as such, so I’ve stopped my pain medications. My doctors are recommending otherwise.)

What pain do I still have?

The bone pain is better after having stopped the morphine, but there are areas that just done feel like they want to heal. Bone pain is a side effect of the Avastin chemo treatment, unfortunately, so I still struggle with it around chemo time and when it’s exceedingly cold outside (thank you Minnesota). The stomach pains are hard, often causing me to want to crawl out of my skin, eat to soothe it (which just causes more discomfort), or simply rest through it.

Am I overdramatizing the pain?

I wish. I hide it as best I can, I work with it as often as I can, and am doing all I can to find relief. I go to physical therapy weekly to see Erin, one of the sweetest people you’ll ever meet, who gives me stretches and exercises to build back my strength and work out some issues caused by my chemo port (which has been removed). I understand that it has been a year since my surgery, and a good six months since my heavy chemo treatments. I’ve got some hair back, my eyelashes are short but there, and it looks like I should be good to go.

But my surgery wasn’t just a fly-by thing. They peeled my abdomen from pubic bone to breast bone and scraped every inch of my skin and organs inside free of as much cancer as they could. While scraping the cooties away, there was nerve damage that may not ever repair itself. Pain meds will hide it, but we know what those come with. Living without the pain meds means I am back to feeling everything when I eat, hunger pains aren’t just uncomfortable, they are knee-dropping, and so forth. 

To be honest, I think it is unfair for anyone to judge another for “overdramatizing” a pain we can’t understand ourselves. Even if they are making a bigger stink than you think is necessary, maybe it’s a call for attention. For understanding. For company. For love. For a freaking hug or someone to just know things are harder for you right now. 

 

So, why aren’t you back to normal yet?

I’m as close as I can be to my old “normal” right now. I’m tired of hearing how “different” I am. Of course, things are different for me, but I AM STILL ME. It is still ME. My soul isn’t different. My heart isn’t different. My smile, my voice, my feelings, my dreams, my desires, my goals are all still ME. 

But because I’m not physically the same, I keep being told how “different” I am. Ughh. Yeah, I know. All you see is how “different” I am, and it makes me realize how much you want me to be back to “normal”, which feels like I’m just a huge annoyance to everyone. 

What’s the situation today?

My last chemo treatment was scary for me. They sat me down to tell me my tumor numbers jumped up 5 points from the previous treatment, and if the results from the most recent tests come back the same or elevated we have to schedule a scan right away.  ….they called me a few days later, and it had jumped up another 6 points. 

I wanted to talk about it. About how it scared me. And about how, even after hearing the scan was clear, I’m still extra scared. About how heavy of a load this cancer crap is to carry on my shoulders. But I was so scared about being judged and doubted. 

(Update: 12/26/19- CA125 Tumor Markers jumped again, this time an added 21 points, officially knocking me out of “normal” range. However, they are still cautious to say it’s cancer and have told me it could be a respiratory infection. I have to wait for my oncologist to get back from vacation and should know more after the first of the year.)

But, it turns out, I just had to be careful whom I talk to, is all. Those that are questioning me and my pain, recovery, or pill use… aren’t the ones who understand. Those who still know I’m in here, in this broken body, I’m still hiding in here- the same old me, and those people I can still talk to. The ones who will love me and adjust to my new physical limitations without calling me “different” all the fucking time. Do they really think I need a reminder that my life is different than it was before I got stage 4 cancer?

So when I do get into the office, it’s only for a few hours at a time. I go to bed ridiculously early, since I rarely can sleep through the screaming pain in my neck from the port. (Hence the Physical Therapy appointments) I’m at the MN Oncology building an average of 3-times per week yet, but thankfully all of the people there are some of the nicest souls I’ve ever had the pleasure to know. 

Other than that, I don’t have too many updates to share, I guess. I don’t know if this update even told anything new since the past one. I just know that this road isn’t over and it is still incredibly difficult. This cancer has beat-up my family more than I thought it would. It’s caused distances that I didn’t expect, and they hurt more than the cancer itself.

Cancer is lonely. Just as I’d assume any invisible pain would be.  

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