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
❤ 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.
I made a magazine and it was hard. It’s full of snark and puzzles.
Everything that hurts, echos. The greater the pain, the greater the echo. Chemo interrupts the bodies ability to heal, making the healing process an extra long one. I read the blogs and forum posts of my fellow cancer survivors and it’s common for people to look at someone post-cancer and think, “Okay, they should be better by now.” Because many people can’t understand the invisible pain. They can’t understand the intense echo of suffering that follows the physical and emotional stress of cancer. It takes a lot of patience and caring to heal. There is not one path of healing that works for everyone. We cannot judge how long we think it should take for someone else to heal from trauma.
It takes irritatingly long and I’m living it. The one thing that’s more stressful than watching someone take forever to feel better is actually being that person who needs healing. I said during chemo that I believed during treatment it was harder on those close to me (emotionally) than it was for me. I still believe that. I’d much rather go through radiation two more times than watch my husband face it just once. However, after cancer, it is so much harder on the cancer survivor. The echo means I have a limited amount of time where I feel great in between long stretches of discomfort, pain and brain fog. But I have hair and I don’t look pail and sickly, so to everyone else I often seem fine when I’m not. As time goes on, the moments where I feel good are longer and the brain fog and pain is shorter, but it takes a lot of time and it’s impossible to predict what days I’m going to feel full of energy versus wanting to sleep all day and unleash my short temper on everyone who complains about the weather or other petty nothings. I’m grateful to be surrounded by people who are understanding, and have selflessly put my healing ahead of they’re expectations or desires. As much as I appreciate that, no one can heal my mind and mood as well as I can. Happiness, or even just emotional stability, isn’t about what or who happens to you (although those things do add to it), it’s about how you treat yourself and the people around you.
The post-cancer plan has been to do everything in my power to treat myself well and take care of myself by improving my daily habits and thought patterns. It’s not easy to identify what all can or needs to be improved, but I use “old me” as a compass. When I’m 80 I want to say I contributed more than I took, I want to say I was compassionate, and I want to say I enjoyed life. I’ve been trying to change habits lately. I want to eat less and I want my diet to be more raw. I want to exercise more. I want to drink more water. I want to take things lightly and laugh and play. It’s not a huge change I’m trying to make, but simple and gradual improvements here and there. All of this is meant to serve the bigger picture and how happy I am with that picture. In my search for healthy improvement, I found two things that really resonated with me while healing: Tea and sympathy.
Sympathy represents how I treat myself on an emotion level. It means that periodically I stop and pay attention to how I feel and then I say or think the phrase, “It’s okay, you’re comforted now.” That phrase makes me laugh and smile and feel comfortable. I laugh because you can’t tell anyone how they feel, including yourself, and it sounds a tiny bit patronizing. I smile because I understand the innocent optimism and caring feeling that I feel when I tell myself that. I really do want myself to feel comforted. It’s silly to say it to myself like I’m a toddler talking to another toddler, but it works. Sympathy also means when I got home from my doctor’s appointment today, I observed that I was keeping myself busy and trying to reach out to talk to others to distract myself from the flood of emotions I was feeling. When I observed myself in this state, I stopped and I looked at my reflection in the microwave and I said what I would say to someone I care about. I said, “That was a lot to process today. Don’t feel like you need to hold all of it in. Cry. Take the rest of the day off to play or write. Do something that comforts you.” Instantly I cried and it felt good.
Tea represents how I treat my body with healthy rituals (like exercise and raw foods). It means I take the time to do good things for myself every day. Specifically tea has been the most enjoyable change, as well as a use for all of my empty apothecary bottles I’ve been collecting over the years (I LOVE THEM). I started last year with pre-bagged herbal tea on a more regular basis until I worked up to turning it into a daily ritual. I’m allergic to black and green tea, so herbal is all I can do. Then I discovered the tea I was drinking (along with several other teas) possibly had cancerous amounts of pesticides. Of course it does! Everything that isn’t fresh, local, and raw eventually gets outed as cancerous or at least bad for you. If it comes in a box and has a long shelf life, it’s probably bad. It sure feels that way whether it’s true or not. I made the switch to loose leaf tea in reusable teabags. It’s like going from old canned folgers to fresh ground gourmet coffee. The taste and aroma is noticeably better, my typically poor digestion has improved, and my face is a little less red and blotchy (one of the more lasting side-effects I had from chemo). It’s also cheaper than the bagged stuff. It takes a bit longer to prepare, but that’s great! It’s a good use of my time. It’s meditative, it appeals to my hunter-gatherer instincts, and there’s a lot of room for creativity when it comes to mixing spices. Tea, walking, sleep, and good foods have all aided in improving both my body and my mood.
As far as my fears and anxiety surrounding cancer, time has been the only thing to heal those toxic emotions. Sympathy has healed my stress and discomforts. Tea has healed my body and improve my health. Today was my 1.5 year check-up in remission. I have 3.5 years to go until I graduate remission. The nurse took my blood pressure today and said, “You must be super relaxed right now.” I am. I was. I hadn’t had my test results, I didn’t know what was to come, but I was able to breath deeply and tell myself, “You’re comfortable.” and that was enough in that moment. It was only a simple blood test, no scans or anything invasive or super informative, but an all-clear is an all-clear! I have a lot to celebrate and be grateful for. Mainly, I’m grateful for being alive and for the ever-growing ability to remember how great that is every day.
I made a 15 minute movie using videos I recorded on my phone while being a nanny to the twins. I started working with them just after they turned two and it has been wonderful. I love them to pieces.
Hello All. It’s been a while since I wrote. My brain is clear and “working” again. It seems without the chemo-haze I’ve lost interest in sharing my emotions to anyone and everyone on the internet. I have mixed emotions about that, but if I start talking about them I’ll end up not posting this. I’m still journaling in private. I’ve been participating in group story-telling once a week, as well as working on a long-term creative project with two writer/actors. I’ve kept up with learning the ukulele, posting weekly videos on facebook to show my progress. I’m still a nanny to the cutest twin boys and loving every second of their two-year-old energy and curiosity. And even though it’s not a main focus, I’m still supplementing income with a portrait shoot here and there. I’m about three months in to my 2nd year of remission and I’m finally feeling like cancer doesn’t define my day and cancer doesn’t define my emotions. Time has healed me in the way only time can.
Against all reason and logic, I decided to take part in a holiday bazaar this year. I say it’s against logic, because I made this decision three months before the bazaar, with next to no inventory for said event. With spots being limited, I felt that I had to jump into the opportunity whether I was ready or not. Once you get a spot at this bazaar, you’re guaranteed that space every year. I’m definitely already looking forward to next year when I will have had an entire year to create inventory for the event. For now, I’m just excited for the learning experience.
It’s been three months of intense crafting, often equating to 14-hour work days. The good news is, I LOVE IT. It’s difficult. I sometimes scream at yarn like a crazy person and throw little tantrums while I’m home alone trying to get a new pattern to work. When I say I love what I do, I don’t mean it’s easy. I enjoy it because it’s satisfying. After three months I have two tubs full of crafts and I’m ready to go! My only worry is selling out early due to a small inventory, and that is the BEST problem to have. 🙂
The bazaar is tomorrow, and everything is at a discounted price to what I usually charge for special orders or Etsy sales. If you’d like more details about the event, follow this link: http://kaminakapow.com/crochet/
The most exciting thing to come from therapy has been finding the words to express how I feel in the moment. Recently, there has been a shift in me that has caught a few people close to me by surprise. I’ve been treating adults with the same respect and leniency I pay to children. It’s something I’ve found both liberating and hard to properly describe. I told my therapist about it this week, and I shared that I’ve been wanting to write about it, but I haven’t found the words, so she listened and helped walk me through what I was feeling. It began with me describing how, for the longest time, I have preferred the company of children. And it’s not because I feel like I’m a big kid. It’s not because children match me intellectually and it’s not because I can relate to children. I can’t. The reality is that I don’t relate with them much at all, except in the realm of being fearlessly creative. All children are creative, because they haven’t yet learned to feel bad about what they create. I find that refreshing, but as an adult it can feel lonely to listen to my peers and elders talk about all the ways they are not creative, when I know from experience that they were all once creative as children, and they let that part of themselves die off. I’ve ranted on this subject plenty of times, but that’s not what I’m here to talk about today. I want to address letting go.
I enjoy being around children because they bring out the absolute best in me. This is another way I don’t relate to my peers and elders. For the most part, adults feel that children run them down and test their patients. I don’t agree. I find their honesty refreshing and I find their vulnerability endearing. I am the least stressed when I am around children. In my ideal world, we all live and let live. I don’t seek to control kids, I find no pleasure in getting them to do what I want them to do, and I’m not afraid of their raw emotions. When a child cries, I sit next to them and I allow them to cry. I rub their back if they don’t push me away. And if they do push me away, I don’t take it personally, I just let them know it’s okay to cry and I give them space. Kids appreciate this. Adults do not, or if they do, they don’t express it. When I treat adults in this manner (whether it’s literal crying or they are complaining), I’m told that I’m cold and heartless and that I don’t care. If I cared, I’d try to help them stop feeling what they feel, and I would feel sad with them and I would take on their pain. I’ve struggled with this. I’ve struggled for years feeling like I’m cold and heartless in the eyes of adults. When I shared this with my therapist, she called me wise and told me, “You recognize something important, you know that crying is good for us, and we all need a safe place to cry. You create a safe place to cry, and that is beautiful.” And I cried when she said it. I’m crying again just recalling our conversation. It’s a good feeling to have an emotional expert call me wise. I feel more grounded in who I am and I feel safer and more confident to be that person.
That led to the conversation this week, where I told her that I worry about being myself, because in the past when I have stepped into myself I’ve been met with negativity. My exact words were, “I’m feeling very comfortable with not feeling responsible for the emotions of others,” (this is something I’ve been working on with her) “but I worry about being called cold, and not having the words to stand up for myself and the fact that letting go of control is not the same thing as not caring. I still care, I just don’t feel responsible, but I don’t think that’s enough for some people to accept where I’m coming from. I want the words to express what it means to not be hooked by the emotions of others even though I do care about them.”
She replied with a poem by Chuck Swindoll. And this is another example of my “live and let live” mentality. I don’t agree with Chuck Swindoll’s religious views, but this poem is exactly how I feel. I have no problem looking past what I don’t agree with to see what I do agree with. Here is the poem.
To let go doesn’t mean to stop caring,
it means I can’t do it for someone else.
To let go is not to cut myself off,
it’s the realization that I can’t control another.
To let go is not to enable,
but to allow learning from natural consequences.
To let go is to admit powerlessness,
which means the outcome is not in my hands.
To let go is not to try to change or blame another,
I can only change myself.
To let go is not to care for,
but to care about.
To let go is not to fix,
but to be supportive.
To let go is not to judge,
but to allow another to be a human being.
To let go is not to be in the middle arranging all the outcomes,
but to allow others to effect their own outcomes.
To let go is not to be protective,
but to permit another to face reality.
To let go is not to deny,
but to accept.
To let go is not to nag, scold, or argue,
but to search out my own shortcomings and to correct them.
To let go is not to adjust everything to my desires,
but to take each day as it comes.
To let go is not to criticize and regulate anyone,
but to try to become what I dream I can be.
To let go is not to regret the past,
but to grow and live for the future.
To let go is to fear less and love more.
This is the mentality that allows me to look at another person who is suffering, and rather than judge what I think they are doing wrong, I feel fine just giving them a verbal hug by saying, “They’re doing the best they can.” If you’re trying to change someone, it means you care, and that’s not a bad thing, but it is an unhealthy expression of a beautiful emotion. Not trying to change people is what allows me to have deep and loving relationships with them. Accepting people where they are and allowing for natural consequences is rewarding. If you really care about someone, let them live. If what they do causes them pain, that’s enough of a consequence, they don’t need anyone’s negative judgement piled on top of that. I’ve learned this by paying attention to who has brought out the best in me. When someone tries to make me feel bad for who I am, or when they try to evangelize their way of thinking, that has made me push back and it brings out the monster in me. I believe I am not alone here, many children react the same way and that leads me to believe that many adults feel it too. If you show love, respect, kindness and forgiveness to a child, they return it. If you punish, yell, and lay down the law with a “my way or the highway” mentality, they will fight back and make everyone around them miserable.
Being around children has been where I have felt the safest to be myself, but thanks to therapy I’m venturing out of my safe bubble to be my best self around adults. I’m learning to let go. I’m not taking everything as personally as I have in the past. I’m learning to say, “that’s how you feel.” I don’t usually say it out loud because that would be obnoxious and rude, but it’s there in my head with every conversation, providing me with the comfort and context I need to make it through conversations with aggressive people. I’m not allowing people to project their emotions on to me. I’m learning the difference between caring for someone and caring about them. I’m learning how to be generous without being taken advantage of, and I’m learning how to respond with kindness when I am taken advantage of. I’m focusing more energy on the people who encourage me and I’m ignoring those who seek to change me rather than engaging in a struggle with them. As a result, I’m feeling safe to be myself, and free to be the best version of myself. It feels so amazing to let go.
Two years ago I had my first colonoscopy revealing a very large tumor. What did they say? The size of a golf ball? I’ve forgotten these details after all the brain-fog from chemo and the general stress-induced memory loss. I remember the tumor was big and would require immediate attention. I took oral chemo, I had radiation, I had surgery, and then 8 rounds of IV chemo. It looked like things were going well after I finished treatment, and then I went in for my follow up colonoscopy the following year, almost to the day, after my initial screening. They found more polyps, and I would have to wait a week for a biopsy. I was grateful things weren’t worse, but still I was left feeling the ache of a worry that wouldn’t go away.
My results came back, and it wasn’t cancer, but it wasn’t all-clear either. They were “pre-cancerous”. If they hadn’t been removed, they would have grown into cancer. I thought about how they had been growing in my intestines while I was still on chemo. I worried over whether they would grow faster this year since I was not being treated. I didn’t just have this to worry about, I had what is now being widely studied and noticed in youth with cancer: PTSD. I had my first anxiety attack. I had my first panic attack. Every itchy throat, every tingle in my leg, every pain and every discomfort was a sign of cancer. I experienced survivors guilt, I experienced the disappointment in the eyes of people who wanted to celebrate with me and I just wasn’t feeling it.
Through it all, I never felt like I was doing anything wrong. I was feeling what I had to feel. I’m not one to fight with my emotions or try to run from them. This, I learned from my therapist, is not common. I was surprised to learn this. I thought everyone felt deeply and just didn’t feel comfortable talking about it. Nope. Most people do not allow themselves to feel any emotions they aren’t comfortable with. Wow. For me, this was step 1 in my path to recovery. Step 2 was also thanks to my therapist. She taught me a lot about how people project. I was familiar with the concept, and I’ve been able to see when I do it (another thing she pointed out was not common), but I had not understood the extent to which everyone projects. Learning these two things helped me breathe. I was still feeling cancer anxieties, but at least my anxieties about people weren’t an extra weight. My panic attacks stopped immediately after exploring and understanding how I was different. Not unique, just different than the majority. It’s empowering to understand these things. I know where I stand, and I feel a newly found comfort in being able to understand the difference between when I’ve done something wrong and when someone is just upset with themselves and projecting that on to me. (The answer is: most of the time people are projecting, and all this time I’ve been taking it personally and internalizing it and worrying about what a jerk I was.) It has nothing to do with cancer, but it’s had everything to do with giving me the specific tools I needed to push on after cancer.
After a 48-hour all-liquid diet and only 3 hours of sleep between laxative preps (I say hoping you’ll forgive all my grammatical errors), I had my second colonoscopy. Today was the big day, two years after the cancer was found, and one year after they found pre-cancerous polyps. I went in feeling calm and excited to get it over with and at least have the relief of knowing the polyps hadn’t yet grown into cancer. Whatever worries or fears I had left as fast as they came. After a year of letting myself feel everything, I was finding myself in a zen state of mind. I thought about riding the wave and not resisting whatever came at me, and I felt ready for whatever might come. To my surprise, the news was so much better than I had anticipated. I had no polyps, no inflammation, just healthy and happy intestines. They look so healthy that instead of coming back next year, I get to wait two years for another colonoscopy. This news felt amazing. After not allowing myself to consider the possibility that the news might be that good, it became overwhelming to take it all in. I’ve cried happy tears of relief and gratitude several times today. Year two of remission is going to be a lot better. Time has helped me grieve. Therapy has helped me move forward. A polyp-free screening has given me an extra boost of confidence that I don’t have to worry as much about the nasty threat of cancer. I’m ready to rock.
This year I will have my first solo booth at a holiday bizarre. I hope that you’ll come stop by for a free hug!
WHEN: 9am-4pm Saturday December 7th (the day after my birthday)
WHERE: Garden Home Rec Center – 7475 SW Oleson Rd, Portland, OR 97223
WHAT’S FOR SALE: Crochet creations! Unicorns, Mermaids, owls, jellyfish, and more unicorns. Also crocheted roses on adjustable rings, purses, dice bags, soap savers, coffee cozies, coasters and more. I also have buttons/magnets and I’m hoping I also have time to create more perler bead projects (those were popular and sold out last year!) Check out my instagram account to see all of my crochet creations as they are finished @kaminakapow If you don’t have an instagram account I think you can use this link to view my account on the web… http://statigr.am/viewer.php#/user/31754825/