It’s time for a health update for all of you who have followed my story. I’m long overdue. I’ve been writing a lot in private. I joined an app for writers this past year and received a lot of positive feedback that has gone a long way to get me back to writing publicly again. I don’t struggle to write, but I hesitate to publish it publicly, where it can live forever. It was easier during cancer treatment when my head wasn’t clear enough for critical analysis of what it means to talk about the intimate details of my life in a public setting. And while I’ve received more positive feedback than negative, there are still those aggressive few who really want me to know that their friend’s cousin’s boyfriend didn’t like my blog because I didn’t look at the bright side of screaming in pain from radiation. So I’m back. I’ll don’t know for how long, but I’m back and I’ll tell you what remission is like.
It sucks. I’m annoyed that I have to say, “it’s better than having cancer,” or some jackass will come along and tell me, ” It could be worse.” Yeah, I know, and you could always stop being an annoying shit that says obvious things. It still doesn’t make the list of Best Things to Experience. If someone tells me they’re making a bucket list, I’m not gonna be like, “oh man, you gotta try healing from cancer, it’s so dope.” I have a hip pain from radiation that’s bad enough that I have to use my arms to lift my left leg into the car when I get into the driver’s seat. I have PTSD that keeps me from leaving the house or generally being social because I never know when an anxiety attack is going to hit or how much pain I’m going to be in. My teeth are breaking at an alarming rate, another expensive side-effect of radiation. I have permanent neuropathy that is somehow impossible for anyone to remember so I have to keep telling people over and over again that I can’t be out in the cold weather in winter without experiencing pain in all four limbs. I can’t even hold a cold drink from the fridge in the middle of summer. I have medical bills that I don’t even want to talk about because it’s the biggest trigger of anxiety attacks. I will say, it’s shocking we still have our home, and it’s a relief that I’ve been well enough to work as much as I have. I’ve gone from only having energy to nanny, to being able to nanny, take on chores, and still have some energy left to make dolls to sell.
I’ve just started a new paragraph and you’ve probably already forgotten I have neuropathy. Don’t worry, you’re not alone. I’ll get it tattooed on my forehead for our convenience. Thankfully, my husband, mother, and closest friends still see me as someone who is healing. It’s really lovely to have them around. I imagine they walk a fine line trying to understand how it is I want to be treated. I don’t care if they get it right, I care that they are still trying after all this time. I care that they don’t expect me to bounce back to the person I was before cancer. I’ve changed. I’ve had to change to adapt to my situation. It’s heartwarming to have people around who like the new me as much as the old. Although it has felt really weird to go from feeling popular to feeling like old news on Facebook. I got so many likes and comments when I was sick! I’m not complaining, it’s just a bizarre experience that only a sick person gets to witness first hand. When I was going through chemo I could post a photo I took of paint drying and people would say it was the coolest thing they’d ever seen. Now I can post something that’s really cool that I worked really hard on and those same people could not care less. I’m giggling as I write this. Being fake popular for a minute was fun. But seriously, it was really nice to have so many people trying to lift me up when I was at my worst. I appreciate it. (Also I’m not above pity-likes for however long I can still get away with it.)
I’m sorry if I dropped out of your life. I still like you as much as I ever did. It’s been difficult adjusting to life after cancer, and having a private space to rest has been important to the process. I’ve turned to art as therapy and it has been the most meaningful thing to come out of the pain. Being home, in my soft clothes, with a cup of tea and some yarn is so very soothing. I’ve always been sensitive to (and overwhelmed by) the loud noises and bright lights of the outside world, and that has been amplified by PTSD and general pain. It seems true for a lot of people after cancer. If they loved going out and being social before cancer, they doubly love it while healing. I enjoyed my alone time before, but now I don’t just enjoy it, I depend on it to gain the energy I need to maintain a sense of normalcy and put cancer behind me. Every time I go out I’m reminded of cancer and how much it has taken away from me.
February of 2017 was my five-year remission mark. I had my last clean CT scan and my oncologist gave me a hug and sent me on my way. I’ll still need a $3,000.00+ (out of pocket) colonoscopy every two years to remove pre-cancerous polyps and check for tumors, because my colon still hates me and I’m still at risk and will be for the rest of my life. I wish I could put cancer behind me, but, as always, I’ll take what I can get. There will be another gofundme in 2018, because I’m never going to be colonoscopy rich. You didn’t know “colonoscopy rich” was a thing. I didn’t either. It’s that thing where you can afford medical and dental bills and (I assume) still have cable TV, a tablet, go out to eat, go on vacations, afford a pet, and other things I used to take for granted.
I don’t care about having those things, as long as I can afford to get my polyps removed and come home to my home that we still haven’t lost and hug my husband who is still healthy with perfect teeth and gripe about silly shit like being fake popular. I want to make my mom laugh and eat waffles with my grandparents and play D&D with my nerd crew and crochet a doll. I want to play Minecraft with the twins. I want to catch pokemon with Tori. I want to garden and take photos in the spring and listen to university lectures on youtube.
When the cancer bites
When radiation stings
When I’m feeling bad
I simply remember my favorite things
And then I have an anxiety attack and I only feel moderately baaaaaaaad
In January I had my routine colonoscopy, bloodwork, CAT scan and check-ups. I’m still in remission. That’s the good news. The bad news is I’m still living with the side-effects, including severe hip pains that are likely from the radiation I received, and mounting medical bills.
I did have polyps that had to be removed again, and they believe I will have to continue to have them removed every two years, most likely for the rest of my life. If I don’t have them removed they will almost certainly turn into tumors again and I’ll be back on chemo with a cancer that is likely more aggressive and harder to treat than the first time around. I was coming to terms with my health and pretty happy that I have a way to prevent the cancer my body keeps trying it’s hardest to produce. Then I received bills I was not expecting. Read more here: gofundme.com/2auhmrtg
I recently had my regularly scheduled scan and I am happy to report I am still NED (no evidence of disease). The results left my oncologist feeling confident enough to allow me to graduate from scans every six months and move on to yearly scans. If anything seems unusual I’m to report to him immediately for a scan. This will be my first whole year without a scan since 2011. I do have one test this year, a colonoscopy in September, but other than that I’m free from hospitals. The results have also allowed me to enter a place of comfort. I was once anxious between every scan, living with a fear that it was going to return at any moment, but now that I’m halfway through my third year of remission I’m starting to let go of the fear.
Thanks to intermittent fasting I’ve also seen an increase in my energy levels. I am still trying to work off the weight gain that was a result of being prescribed steroids. I hate steroids. I hate what they did to my body. Okay, I hate what all of it did to my body, but steroids stick out to me as the thing that, if I have to do this again, I’ll fight to avoid taking. My poor knees are too weak to carry around any extra weight. I can no longer stand up without assistance from a person or an object. Fatigue after chemo is no joke. If you haven’t been through chemo or any other process that wrecks your body, you absolutely cannot relate. I was once an athlete and I recall how challenging and rewarding it was to push myself to go a little farther each day. This is not what it’s like in remission. I was once out of shape and sedentary (at the time I didn’t know I had cancer). This is also not what it’s like in remission. I am confined to consistency rather than improvement. If I push myself to walk further or be more active I risk being so pained and tired that I’m stuck in bed healing for a week. At one point I felt a surge of energy and made use of it, walking over 5 miles 4 days in a row, and it put me out for month and took several months after that to build back up to my walking routine. People without cancer find this alarming and worry there is a problem, but I talk to my doctors about it and it is normal. if I keep to walking 2-3 miles a day, 6 days a week, everything is fine. On the 6th day I try to get as close to 5 miles as I can, and then I have a day off to recover. All is well if I stick to this schedule.
While I’ve been working toward health and recovery I took the time to teach myself watercolor painting. If you’re interested to see what I’ve been up to, I’ve added a portfolio to my website featuring the best paintings. kaminakapow.com/watercolor/
Healing is slow and the medical bills still suck. The out of pocket cost of a scan is 1/6 of what I make in an entire year. I pinch my pennies and pay for it so my husband can afford everything else. Despite the troubles, in general life is alright. It’s really nice to be able to say that. Life is alright. There’s a new normal to adjust to that others tend to be bummed out about, but I’m hopeful. I might not enjoy being physically restricted and feeling like everything is moving slower than I want it to, but I do love being a hermit. I love being at home, maintaining a garden, painting, doing housework, writing, and having the freedom to be lost in thought while I work with my hands. I enjoy the 20+ hours a week I spend volunteering my heart to cancer support groups. I enjoy navigating the tricky waters of using social media to spread knowledge about empathy.
It’s popular to word this in a way that annoys me, that it all happens for a reason. It’s not that cancer happened for a reason. People don’t get cancer because they need a wake up call. That’s absurd. It can be beautifully poetic if someone wasn’t living fully before cancer and used their second chance to turn their life around, but it’s still absurd to say cancer happened for that reason. I was living life to the fullest before cancer. I was on a path I was proud of. But the nature of having to contemplate your own mortality would easily cause anyone to change priorities. I care less about some things and more about others. I’ve changed. It wasn’t easy and it wasn’t something I wanted or even needed to do. I feel I had no choice, either change or be miserable trying to pretend nothing has changed. My body is different now, and so must my habits be. If my habits must change, so must my expectations and goals. I’d happily go back in time and not have cancer and keep going down the path I was on. It wasn’t perfect, but it was alright. I’ve mourned the loss of a life I can no longer live, and I’ve found new purpose, new interests, and new goals that are just grand and passion-filled as the goals I had before cancer. (Typing that gave me a giant cheesy grin). My new normal has lead me to return to one thing I never wanted to change about myself: I feel alright.
Welcome to adult preschool. Everyone sit in a circle and shut up.
I am a woman. I had an intellectual conversation about emotions with two men (acquaintances) today and they were completely capable of keeping up with me on an emotional level, and they didn’t take it as an insult when I noted their sensitivity. They heard it as a compliment. One of them shared that he feels completely comfortable kissing other men with the same emotion that a mother would kiss her child, but he wasn’t raised in America and he’s sure he would struggle with shame and the stupidity of homophobia if he had been.
When it comes to female friends, I have binders full of them. We aren’t mean to one another. We don’t talk crap about one another. We have deep, loving, strong and lasting friendships. I keep hearing people (usually men) insist women are mean to each other, but I see it equally in both genders. This is not a girl thing.
I can change a flat tire and my husband mends his own clothes. Gender stereotypes are stupid, illogical, and inaccurate. Men are not any less hormonal (hello testosterone tantrums!), they aren’t any more even headed or better at making smart choices.
Women aren’t any less capable of running companies and countries than men are. I’ve worked with kids long enough to witness with 100% consistency that boys cry just as often as girls. They act just as irrationally as girls. They have just as many tantrums and they get their feelings hurt for the exact same reasons. Meanwhile parents tell the boys how they should be, and they really have to work hard to repeatedly tell their boys not to cry, over and over again, day in and day out, until the boys have learned how to pretend they don’t feel.
Girls are told they are sensitive and soft and “Sure sweety, you can be a leader someday,” but what they should add is, “If you can learn how to be cold and detached and pretend like you don’t have emotions, like we’ve forced our boys to be, then sure, you can be a leader, too.”
Being a leader in America isn’t for girls right now. But are boys really up to the task either? I’m not convinced they are. It sounds to me like what we really want are robots in charge. Beautiful machines that just see people as $$$ and don’t feel a thing. That’s why I’m voting for a robot for president in our next election. Men, you tried your best, but you’re still flawed with hormones and emotions that come out in the worst ways as you work extra hard to suppress and control them. We need a real leader. We need a robot. #robotforpresident
30 seconds after that last post I got a call from my oncologist.
“We got another test result back and the results look so incredibly good that I want to change our course of action. Let’s wait and rescan you in 3 months to see if it was just an irritant that cause inflammation, because that’s what it’s looking like.”
I like it. I’m still coming down from feeling a bit jerked around, but this is good news and I’m gonna enjoy it while it’s here!
My tests weren’t perfect and now there will be more tests. The area where the cancer used to be is still clear and looking great, however there is some unusual swelling of the lymph nodes in my chest. It could be nothing. It could easily be nothing. But of course I’m at risk, so they want to do everything they can to rule out cancer. Next step is to see a new specialist and probably get a biopsy.
I’m doing the best when I’m alone, being present with myself and how I feel. Every single time someone tells me something about how they believe things will turn out, “I just know everything will be okay!” that brings me out of this place of presence and strengthens the pathway to future-thinking and the “what if” thoughts that cause more pain. Being around other people is hard for that reason, and pretty much only that reason. So I’m turtle shelling and finding my calm place of truth and presence. I take refuge in the truth, and how I feel in this moment. And this moment. And this moment. And this one. 🙂