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.
Finally the weather is nice and we had a long enough day together to make it to two parks. First thing in the morning we head to my favorite park wearing my favorite of their new outfits.
Head first. Eyes Closed. Can’t Lose.
(to be read in the tune of “clear eyes, full hearts, can’t lose”)
“Please will you take a picture of me petting this famiko?”
This was an interesting conversation…
Our first posed photo of the day:
Back at home, E tells me a story about how much he likes yogurt pretzels.
E + PB&J = BFF
X was done and down from the table first, while he waited for us he sat quietly in the cushions. I asked him what he was up to and he told me, “I have to sit in my nest for a long time. It’s a nest.”
That last burst of energy before nap time…
A ten minute episode of Sarah & Duck
<3 NAP TIME ❤
and then on to the next park.
The park was packed with kids and I didn’t get the chance to take photos. Just this one shot of X after playing Star Wars with some 6-year-old kids.
On the way home X says to E from 20 feet away, “E, we should hug!” and E replies, “Okay!”
and they run to each other.