My New Normal

“I can’t seem to find my new normal.” I read that a lot on a few cancer chat-boards that I frequent and I can’t get it out of my head. You see, there seems to be an assumption that after treatment/surgery and the ‘all-clear,’ that I should be dancing a jig to be cancer-free and that everything should just fall right back into place. News flash – I’m not and it doesn’t. Some people in my life sort of get it, and some have no idea – and the rest fall somewhere in the middle.

New reality #1 – I’m only kinda sorta cancer-free. Yes, the surgery technically got it all. But the kicker is I’m not officially cancer-free for 5 more years. I have 5 more years of constantly looking over my shoulder waiting to see if this bastard is coming back. 5 more years of worrying about every ache and twinge. 5 more years of getting poked, prodded, scanned and checked out every few months, and then waiting anxiously for each appointment and test result. Because the reality is, the rare bastard of cancers that I got has about a 35% chance of coming back in the near future – and if it does, it comes back much bigger and badder than before. If it comes back, I will definitely need radiation and chemo, and will most likely lose some more body parts that I’m kind of fond of. So yep – while I’m currently NED (No Evidence of Disease), I’ve still got a long road ahead of me before I can really and truly celebrate. So for now, I am still trying to find the right amount of happy dance to do to that will allow me to celebrate, and yet keep the cancer-gods from smiting me for celebrating too soon.

New reality #2 – I’ve had to re-evaluate a lot of people in my life – and what I found surprised me. I get it – people (myself included) normally just aren’t sure what to say or do when someone they know gets bad news. There’s a lot of ‘let me know if you need anything’ and ‘I’ll be praying for you’ type stuff – and that is perfectly fine. What surprised me was the complete randomness of responses from people I thought I knew, and people I’ve still never met. I had friends I’ve known for a long, long time just kind of bow out after an initial ‘hope everything works out’ – and that sucks. I’m still trying to wrap my head around a few of those. I had friends tell me that all that matters is that I’m alive – which by the way, is right up there with ‘it could be worse!’ (Rant following…Having a friend brush off how you feel is kind of shitty. By that ridiculous logic, any random person spending time say…recovering in a burn unit in a hospital after just having lost their entire family in a horrible fire should just be told to suck it up, brush off the pain and mental distress and par-tay, because hey – they’re alive! Whee hoo! Annnnnd end rant.) So yeah – if you’ve never heard the words ‘you have cancer’ said directly to you, even if you mean well, you just don’t get it. You don’t. And you can’t. Which is ok. It happens. Which brings me to my next friend experience – I have a new wonderful friend who I met on-line who is practically a twin to me. (Hi Frodo! Miss you!) And we still haven’t met face to face. She and I had the exact same rare cancers at the exact same time and seem to have a freakishly large amount of things in common. Ridiculously, freakishly large. Books, tv shows, comic strips, movies, sense of humor, all of it. As a joke I asked her what kind of OJ she drinks – turns out, the exact same one as me. Freakish, I tell you. And if it weren’t for this cancer crap, we never would have gotten to bounce catheter jokes off of each other – and that would be a shame. Another good thing – I had friends that I haven’t talked to in years come out of the woodwork and offer so much love and support that it’s amazing. And then some of my friends and most of my family responded exactly as I thought/hoped they would. Because they’re totally awesome. So yep – I learned that some of my friends suck, and most of them are awesome. It just kind of shook things up learning which was which.

New reality #3 –  7 weeks after surgery, I am still a potato. Oh sorry – a pet rock – because a potato serves a purpose. When I was awaiting my surgery date, my lovely new friend was just going through her surgery. And she suddenly became much less witty. I had to use small words when I e-mailed. I had to explain jokes. It was like her brain had decided to drop to 50% capacity. Hmmm. She told me to just wait – it would happen to me. And then she planned on mocking me relentlessly. Sure, I said. Not gonna happen. Except it did. When I first got home, I blamed it on the pain meds. Then lack of sleep. 7 weeks post-surgery, I don’t have anything to blame it on. I forget words. A lot. I stare at walls. A lot. I mix up words when I talk. A lot. I forget stuff. A lot. And I’ve just discovered I’m not completely mental. It’s called postoperative cognitive dysfunction – and it’s fairly common after the type of major surgery I had. It has to do with the levels of and length of time you’re under anesthesia. And I’ve just learned it can last for months. Possibly years. Yay me! I’m keeping my fingers crossed that it goes away soon, because it’s getting ridiculous. Ah well, at least I provide entertainment value occasionally. Like tonight, when I almost tossed the used coffee filter full of grinds into the dishwasher instead of the trash can. Good times.

New reality #4 – Constant pain and/or discomfort really, really sucks. Nothing terribly amusing or clever to add to this one. I just wish someone would have explained all the potential owies I would have after this surgery. Doctors everywhere are touting the wonders of this magical machine that is the Da Vinci robot used for my surgery. Even my surgeon happily explained that I would be up and about in 2 weeks and all better in 4 weeks. Testimonials on-line from women gleefully exclaim that they experienced zero pain after surgery and were back to work in 5 days. (Seriously. These are apparently the same women who in olden days would deliver a baby while working in the fields and just keep going.) Well apparently whatever magical little fairy that was supposed to swing by and sprinkle her ‘pain-free/fast recovery’ fairy dust all over the robot used on me, forgot. Because 7 weeks out, I’m still in pain and still tired. Which led me to do a little research. Surprise, surprise, it appears I’m not alone in the least. Most women who have the same surgery I had get a minimum of 6 weeks off work – most get 8. I initially got 4 weeks off and had to beg for 5. (Thankfully, I have an awesome boss who is letting me work what hours I can. He gets it.) Did going back to work too soon slow down my recovery? Who knows. But it sure didn’t help, I know that. The reality is that even with the magical robot machine, the surgery is what it is – a major surgery that takes women a year to fully recover from. The removal of several organs and loads of connective and soft tissue, the stripping of arteries, veins and nerves, the severing of some of those same arteries, veins and nerves, the ‘we’ll just move this over here while we work on that’ jostling of the innards, the hunt for and removal of 20-ish lymph nodes and oh yeah, the hundreds of internal, and some external, stitches isn’t a freaking walk in the park. There’s no getting around that, no matter how modern and snazzy the shiny new machine is. And I kind of wish doctors acknowledged that.

New reality #5 – Permanent health issues that no one warns you about really freaking suck…and the psychological ramifications of the shit you already know about suck even worse. Remember that nerve-severing I mentioned before? And the lymph node removal? Oddly enough, no one warns you about the permanent effects of that. I take that back – I was warned about the nerve they had to cut that went to my bladder. It just gets in the way of where they need to work, apparently. Luckily, that issue is vaguely kind of sort of fixed. But they don’t warn you that in order to find those pesky lymph nodes, they have to basically sift through a lot of stuff. And then strip down various nerves, tendons, arteries and veins to get to them. Which tends to up the chance of nerve damage, wouldn’t you say? I would, because I now have nerve damage in one leg and one arm. Permanent? Who knows. After much poking and prodding and visits from lots and lots of neurologists while I was at the hospital, I was told I *should* be better after 2 weeks, but there was a remote possibility it was permanent. Well, it’s been more than 2 weeks, so guess which way I’m leaning? *sigh* And if the shooting pains in my arm/hand and leg weren’t enough added fun, I have more to look forward to. Lymphedema, anyone? Who knew – if you remove lymph nodes, you stand a very good chance of screwing up the snazzy little lymphatic highway that runs through your body. Something to do with fluids not draining properly, increased risk of permanent damage and pain if not treated immediately, having a much higher risk of infection in the affected limb blah blah blah. I say blah blah blah because it takes a while to really kick in – usually a year or two after surgery. And I’m too damned tired to worry about yet another random health issue. Because I’m already emotionally exhausted with all the crap I already knew about. The no having kids part, the 5-years of checkups, the long recovery, the absolute emotional roller coaster that is a cancer diagnosis – I really did know all about all of that. And yet it’s still surprising to me the toll it takes. Every. Single. Day. It’s all more mentally exhausting than I ever dreamed.

New reality #6 – The apparently compulsory pervasive perkiness of cancer survivors makes me feel guilty for having bad days. It’s almost as if I’m supposed to suddenly be a better person – one who is cheerfully grateful every single second for every breath, every dawn, every moment and have a damn halo over my head while I’m at it. I’m supposed to re-evaluate everything and discover a new-found generosity of spirit, a wiseness, a battle-hardened survivor-type attitude where I’m above the day-to-day nonsense. Yeah. I’m not. I’m different – I don’t know how yet, but I am. I know that. But most days I just pray for the pain to stop and for the cancer to stay away, and hope that today is a good day where I don’t need to go to bed after 4 or 5 hours of work – which entails sitting at a desk. But I feel like even on a bad day, I should have that weary, good-natured, happy to be here attitude – all the while curled up with teddy bears with little pink ribbons tied on them. Guess what kids – cancer and recovery isn’t always rainbows, unicorns and kittens. Sometimes folks with cancer have really shitty days. And I’ve decided that I’m not feeling guilty about it any more. When you stop to think about it, it’s better this way anyway – hiding your feelings/fears/hurts is ridiculously dumb. And counter-productive. So suck it, rainbows and unicorns! We can’t all be warrior princesses every single day no matter how hard we try.

So what does all this rambling mean? (And by the way, it’s taken almost 4 days for me to type this little blog entry – thank you postoperative cognitive dysfunction!) I’m not sure entirely. It means I’m still needing to take things one day at a time and that I’m still sorting some things out and I’m still recovering. A few weeks ago I just needed a break – I needed to retreat and curl up in my own mind and think some things through. I’m still pondering and still not completely ready to step back into the real world yet. But I’m getting there. Slowly. So don’t you worry faithful readers – all 5 of you – I’ll get back to writing the rest of my story soon. As long as I don’t forget my log-in. Or password. Or blog name. Or my own name. Or where my computer is. Or…

12 responses

  1. Sitting here relating to every freaking thing you wrote here, sister. Just yesterday I called my husband and said, “I told you this morning I was going to do something after lunch. What was it?”. Par for the course nowadays. I couldn’t even remember what I had planned to do after lunch. And I think the fairy dusting fairy was on vacation this summer. My robot got missed, too. And you can screw the compulsive perkiness. Ain’t gonna happen. It’s been almost 11 weeks since my surgery – still much pain, still much swelling (I look 6 months pregnant on a good day), my bladder is still throwing a major bitch fit and refuses to work properly, all things that make perkiness very unlikely, Ever. And I think I’m going to slap the next woman who tells me she had a hysterectomy, too, and recovery was sooo easy. I hate to tell you this, but the surgery I had is a totally different animal than the surgery you had. I was gutted. You were not. And don’t tell me to go talk to so and so because she had a hysterectomy, too, and she can give me some pointers. Unless she had a radical and was butchered like I was, her experience isn’t even in the same ballpark as mine.

    I am different, too. There is no way we can go through what we’ve been through and NOT be different. Maybe someday we will be ready for the rainbows and unicorns, maybe not. Either way, it’s ok. I think I am doing a good job of hiding my frustration, anger, sadness, just plain AAAAGGGHHH, that all of this has caused in me. I know I’m not doing myself any favors by doing so, but it seems to make the people around me feel better, so I do it. And I will probably continue to do it. Hiding and pretending. Why? Because once the cancer is “gone”, it’s all supposed to be right with the world again. And if it’s not, there must be something seriously ungrateful and wrong with me. I didn’t need chemo and rads, so its like my cancer is “less than” people who did, and I should just go on my merry way like nothing ever happened. Well, it doesn’t work that way. My world was rocked, no, shattered, this summer. And picking up the pieces of that takes a long long time.

    There’s no way around it. Cancer sucks. I love you dearly Samantha and I always will. You are the one light in this darkness, the one part of it I wouldn’t trade for anything in the world. . .

    • I absolutely adore my Frodo. Thank you for sticking with me through all of this emotional nightmare. You paint to work through things and I write – we’re such a cute couple. And I love you too. You’re kind of awesome, you know.

  2. Rant accepted. Sorry I ended up in the suck pile. By the way… I’m elated that you’re blogging again. I have honestly missed this (and you) very much.

    • You were only on the suck pile temporarily. I’m done being all emotional and whatnot – well, other than the basic hormonal chick emotional standard. And thank you. I missed you too. Jerk.

  3. I’ve been trying to think of the words I want to say after this post. Samantha and I have talked since she wrote this (obviously) and I even though she disagrees, I really feel like I could have done a better job. A lot of what she wrote was new to me. I mean, I knew she was tired of feeling like “I’m cured, everything should be awesome” but I … I dunno, I feel like I missed on the subtleties. I think for me I was too busy being in awe of her to realize that she didn’t need me to see her as a hero so much as to see her as my wife. In need. Of a husband. To hold her hand.

    Don’t get me wrong. I made her laugh. To the point she told me I really had to stop because it was hurting her incisions. But laughter is not empathy, is not what she necessarily needs.

    We have talked since she wrote this and it is not that I have failed her. It is just that I FEEL that I failed her. I love her and I have a penis. Yes, that means I want to do dirty, dirty things to her. But more than that, it means I want to fix whatever is wrong. It is what we men are cursed with. She has reassured me that I did not fail her. But I know I could have done better.

    So you – yeah YOU. If you have a penis and a woman you love dealing with this shit pay attention. No, not to me, to Samantha. Read what she is saying, and read between the lines. Then apply it to your woman. Be what she needs, not what you think she needs. Accept that even then you will be wrong. Suck it up. That’s what being a man is.

    The end.

  4. Reading about what you have had to endure is making me so very sad. I don’t know what to say except that I love you. As a person on “the other side” who has had to watch several family members and friends battle cancer, all I know is, as you said, cancer sucks. I’m so thankful for having you in my life and I wish I could offer more than words of encouragement, prayers and love. But at least i can do that. I pray that your pain subsides quickly along with those other crappy side effects. Big hugs and lots of healing vibes are coming your way, Chica.

    • Hey chica. I’m finally getting off my butt and getting back to my blog. I love you too, you know. And thank you for your thoughts, prayers and love. It really is much appreciated. I think you’ll be happy to know that I am mostly better. Still random pains and lingering nerve damage, but it’s getting better every day. And knowing what the alternative was…yeah, I’m good. Really. Hugs to you and the family.

  5. Ahh, the DaVinci robot. I caught a quick glimpse of it in the operating room. Sitting there, all covered in plastic, waiting for me. Sure it only makes 5 little holes, but it does mess things up inside. I understand completely what you have gone through. Post surgery, I called the doctor’s office several times with questions. Things they seem to forget to tell you, like, it will be 3 weeks before you can go to the bathroom without having any pain (if you can go at all).

    It won’t be long before you are writing about puppies and unicorns. Cancer will be a thing of the past.

    • I’m almost back to writing about puppies and unicorns! Almost. But you’re right – it makes 5 little holes, but it sure does screw things up. Stoopid robot. 🙂 I’m doing better – but still not even close to 100% 5+ months later. I blame those freaks of nature that have it done, go back to work a week later, and are running marathons in 6 weeks. They ruin it for us normal folks! 🙂

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