07 February 2018
APR 14
I’ve made some green/eco-friendly and reusable heat packs. Keeping with the Survival Organs theme, you can get them as a brain or a uterus!
But why buckwheat?
1. Buckwheat hulls conduct heat. Meaning you can plop one of my filled organs into the microwave for 30 seconds and it heats up. Or you can leave it in the freezer and it’s a cold compress.
2. I only use organic hulls. Much better for the environment and better for you. If the cotton organ ever breaks down, you can put the old hulls in your compost pile.
3. Less disposable. Remember those blue-ice cold packs the nurse at school gave out? While the chemical reaction was super cool, after one use you had to throw them away. That’s money in the garbage, if you ask me.
You can get your own brain or uterus over at Survival Organs.
Friend of the blog, Kim Werker, wrote up a great blog post “Taking the DIY Out of Business”. This made me sit up and take note:
As businesspeople, we cannot be successful without help. We just can’t. None of us is ace at all the tasks we need to accomplish to run our businesses. None of us, so stop planning the angry email you’re composing to me in your mind in which you’ll tell me you’re a skilled accountant, graphic designer, publicist, marketer, product designer, manufacturer, writer, editor and salesperson. If you think that, you’re full of shit.
She has a great point that in our lives, there are somethings we are just not good at. It made me think back to chemotherapy and how I nearly sent myself to the hospital from exhaustion. I simply couldn’t go to my volunteer job in New York City, come home to clean the house, make dinner and find a full-time job while squeezing in oncology appointments and dealing with medication side effects.
I tried that and you know what happened? I collapsed in the middle of the street trying to get back home from the bus stop. Thankfully, I was still on the sidewalk and two passersby helped me back up. I managed to walk the three blocks back to my apartment but I was down for the count for the rest of the day. The dishes stayed in the sink, dinner was not made and I took a five hour nap.
I learned a very valuable lesson: I can’t do it all and I can’t do it alone. We had a family meeting and my sister who lived next door, offered to clean my apartment for me. The SGT and I would have dinner at my mom’s place downstairs. And we made peace that we would probably be eating a lot of pizza and crappy hospital food for the foreseeable future.
I outsourced the things I just simply couldn’t do. And when my friends asked, ‘What can I do for you?’ I gave them ideas. Like, “I would love some company. Can you come over so my mom can go home for a bit?” Or “Paul needs some food. Can you drop off some Wendy’s and surprise him? I’ll pay you back.” People were delighted to have something to do to help out.
So if you’re managing illness or going through grief, reach out to the folks who have asked if they can help. Let them know where and how they can help you. You’ll return the favor some day and the bonds of community and friendship will strengthen between you.
APR 08
I have been blessed with a wonderful gift from Matt and Darice of Pauseli.us! And even better for you, I’m passing it on here and to my newsletter subscribers.
My two most popular posts, What to Say to a Sick Friend and What Not to Say have been given a graphic design make over.
If you sign up for my newsletter, you’ll get the high resolution PDF files for each graphic FOR FREE. Print it out, slap it on a post card or email it to a friend. Just my way of paying it forward.
APR 04
A new trend is sweeping social media. People are taking make-up less selfies and posting them online in the name of cancer awareness. There’s even a Facebook page collecting donations. For awareness. Because this is the 21st century and did you know there are people out there who aren’t aware that cancer is like totes a thing?
I know! /sarcasm
I find the trend to be at best silly (you look fine with make up on or not!) and at worst self serving.
What does taking a photo actually do for people who have cancer? How does putting up yet another photo on Facebook contribute to cancer research? What the hell does “awareness” mean?
This is what really bugs me about the trend: it’s another example of slacktivism. Do you want to help people in need? The best way isn’t spending money on a Livestrong bracelet or taking an unflattering picture. It’s donating your time, your money and your skills to organizations that actually help.
Do you want to help out on a local level? Go volunteer at a soup kitchen, go read to pediatric cancer patients or donate money to the local no kill shelter.
Want to make a meaningful impact on someone’s life? Join Big Brothers/Big Sisters. Make dinner for that person you sort of know whose going through a rough time. Put aside “feeling weird” and do something generous. Hell, buy the guy behind you in line a coffee.
When I was going through chemo, I knew people who would proudly show off their pink-washed items or smugly tell me that Lance Armstrong is their hero. I never knew how to respond since these were people who were often ‘too busy’ to really ask me how I was doing. Or see me more than once. They were the friends who faded away. But thanks for putting money into the Susan G. Komen Foundation’s already deep pockets.
If you want to change the world, put down your cellphone and roll up your sleeves. A selfie isn’t going to find better and cheaper treatment options for cancer.
MAR 31
In last Friday’s newsletter, I sent out a link to a lecture I found via Lifehacker. Reddit founder, Alexis Ohanian talks about the first step to being awesome at something is to suck really hard. What a great concept!
Too bad a cartoon dog said it first.
Quote attribution aside, it’s still a great sentiment and goes hand in hand with Bob Ross’s philosophy that “talent is just applied interest.”
On Sunday, I was talking to a group of 13-year-old girls and I mentioned that a problem adults have is doing something new and out of their comfort zone. Ask a child of three to get up and dance in front of strangers and they’ll happily do it as long as the tunes are pumping. I pointed out that they’re approaching the age where they’ve developed a sense of feeling embarrassed. They’re now learning to avoid new things in order to avoid feeling embarrassed at their mediocre first attempts. But if they can embrace the suck and keep working hard, that is the key to success and happiness.
What are some things that got you past the urge to give up on a new skill?
PS If you want super cool links and things to think about, go sign up for my newsletter. It’s free and gets sent out every other Friday. Plus you’ll get a super cool gift! So go sign up.
Of course, I don’t mean awesome funk like Parliament/Funkadelic, who are also from New Jersey, but the bad funk. Those days where you just can’t get comfortable in your skin, you’re in such a terrible mood. Here are my five tips for de-funk-ifying.
1. Write out a list of 10 things that give you energy. Not just physical energy but spiritual/emotional energy. What gets you excited? It can be as mundane as the smell of a paperback book or using a new pen for the first time. Go write out 10 more, and then more. I try to aim for 100 things (I’m still working on my list) and I keep it handy. When I feel down, I pull it out and I go and do one of the things on my list. I keep going down the list until I feel better.
2. Get up and go somewhere else. Another room in the house, sit at a different table or get up and go for a quick walk. When you’re down, it seems so much easier to just stay where you are physically and metaphorically. Sometimes by changing our physical position, we can change our emotional positions. (See what I did there??)
3. Force yourself to smile and put your arms up like you just won something. Amy Cuddy’s TED talk goes over the science behind this. Personally, I’ve done it and it really does help once I get over feeling silly. I may or may not end up singing “We are the Champions” at the end.
4. Listen to uplifting music. It doesn’t have to be deep or meaningful music. I just put on songs that I know all the words to that have a fast beat. Funkadelic’s “One Nation Under a Groove” is a great one to listen to. I’ve got a Spotify playlist full of my favorites, you can listen to it here. Music not your thing? I browse websites like Cute Overload or clips from my favorite stand up comedians.
5. Hit reset on the day. And sometimes, I just need to give myself a good talking to and make the decision to just be less grumpy and bitchy. When I’m in a funk, it’s hard not to view everything through a negative lens. I call a ‘do over’ and do my best to muddle through with more patience and kindness. And I remember that tomorrow is a new day with a new slate.
What do you do to get yourself out of a bad funk? Who are your favorite funk groups?
MAR 21
Yesterday, Anna from Mochimochi Land wrote up a thoughtful post about being a beginner at a new craft. Sometimes, when we’ve mastered one skill (like knitting or sewing) it’s very difficult for adults to take a risk and try something new.
For the last two years, I’ve been trying to get better at drawing. It’s been a hard road and I’ve slacked on doodling and posting it on Instagram. The difficulty comes in getting rid of the voice (elementary school art teacher!) that says I have no talent.
Then this .gif popped up.
Which has shifted my thinking. While there’s a huge debate over Malcolm Gladwell’s 10,000 hours theory, there is a grain of truth to it. People who are masters at their thing got there by putting in the time and sweat equity into it. My knitting skills improved because I kept knitting. My drawing skills will improve if I keep on drawing.
Sometimes the answer is so simple and obvious that it’s hard to picture!
Do you feel like there’s an answer to your problem staring at you but you can’t see it? My inner sensei training is tailored made for this!
MAR 19
Monday night I was watching my favorite animated spies turned wanna be coke dealers on FX’s Archer. I’ve jokingly posted before about the show (and no, I’m not seriously thinking about getting a back tattoo) and my love for it. My love for the writing was cemented when Sterling Archer was diagnosed with breast cancer. They handled it in a sensitive and empowering way, but that’s a blog post for another day.
courtesy of FX.com
Monday night’s hilarious episode pulled me up short with a great pearl of wisdom from Archer. His coworkers, Cyril and Ray, were yelling at him for not thinking a problem through or taking anything seriously. He retorts with this gem:
I realized that I am constantly clogging my brain with a bunch of hypothetical “what if?” bullshit! The reason why Archer is able to perform under immense pressure is because he doesn’t let the unknown paralyze him with fear.
My super power is being able to quickly pinpoint how and where everything can go horribly horribly wrong. Very rarely, this ability is helpful. Mostly, it keeps me from doing anything because I can’t help but wonder “what if.”
So I’m making a commitment to not go down that path of “What if?” Instead, what if I threw caution to the wind and did something without obsessing over the consequences.I’ve been able to do this a few times (like rock climbing!) and none of the scenarios my brain has shown me ever happened. What did happen is that I enjoyed myself immensely and I made some very good friends.
Perhaps this will be a better super power!
MAR 17
It is a stormy and sleeting day here in the Twin Cities. Which, for me, means a migraine or a persistently throbbing headache are on my horizon. If I’m lucky, it’ll be a dull headache that I can push through. Pre-chemo, I had a history of migraines, especially in college thanks to birth control. (My BC pills triggered my migraines which meant I wasn’t having sex. And if I wasn’t having sex, I had a zero chance of pregnancy. In a roundabout way, they worked?)
I’ve got chronic migraines now so I’ve become an expert by fire on stopping or lessening the intensity of headaches. Here are 10 things that work for me.
- Know your triggers and (if possible) avoid them. I’m still trying to figure out what mine are but the most likely culprit is the weather and my hormonal cycles. I can’t avoid them but, by keeping a diary, I know when I’m due for one.
- Take your pain medication as soon as it starts. The more time they have to work, the sooner you’ll feel better.
- Take a shower! I’m not sure why this works for me, but it does. It gives me a slight feeling of relief and relaxes me.
- Use peppermint oil. I either smell it like smelling salts or I dilute it and rub it on my temples and my upper lip. It helps to break up the pain a bit.
- No peppermint oil on hand? Try Vick’s Vaporub. In my family, Vaporub was a miracle cure in a jar. The strong smell of menthol helps when peppermint oil doesn’t.
- Use a cold compress. I’ve got a few up for sale, in the shape of brains, of course!
- Wrap the belt of a robe around your head. This one creeps out my husband but it’s a tip I got from my dad. He’d wrap a piece of fabric around his head. The pressure from the belt feels so nicely.
- Use accupressure points. Here’s a post on how to find them and what to do. I’ll be honest, this has never worked for me.
- Try out accupuncture. Like number 8, this was a waste of time and money for me. It might work for you.
- Go to sleep. The most tried and true solution for me: SLEEP. When I’m in the middle of pain, it’s hard to get sleep but after some time it does come and I feel better when I wake up.
What are some tricks that work for you? My compress friendly brains are filled with organic buckwheat hulls which hold both cold and heat. They can live in your freezer or you can microwave them and they become a hot pad!
Warning! I’m a bitter Betty today. I’ve lost another friend to cancer. This post is full of raw emotions and grief. During chemo, I encountered plenty of well-meaning but stupid people. Even in my post-chemotherapy life, I’ve had to smile politely and change the conversation when people say things like “God doesn’t give you more than you can handle” or “You gotta stay positive! If you let yourself think too much, all that stress will trigger the cancer to come back.” Um, no. While I do believe in a mind/body connection, telling someone who has been SICK that they need to stay happy, lest they become ill again is just blaming the victim. What it really says is, “Well, you did this to yourself by feeling down, stressed and tired. You can’t feel those negative emotions any more.” Gee, thanks. It’s nice to know that I basically gave myself cancer because I’ve cried, gotten angry at people or bit off more than I could chew at one point.
I hate to break it to ya, folks, but cancer doesn’t just hit pessimists. Lots of optimistic people get cancer. And some of them become bitter. And some don’t. But outlook has really no bearing on whether treatment works or not. A study published in 2006 had this to say:
However, neither situational nor dispositional optimism predicted CA 125 falling to normal levels (< or =35 U/mL).
CA 125 is a protein in the blood that can indicate the presence of cancer. So whether someone was optimistic or not, their CA 125 levels didn’t go back down to normal. What it does have a bearing on is how well you can (somewhat, sort of, kinda) cope with what’s going on and begin to rebuild after chemo is over. I was really angry at everyone during chemo. I did my best to keep breathing and work through my anger, but I did get mad. A lot. And I cried. A ton. But I kept going to chemo, I kept all of my appointments and I tried to be pleasant around my doctors and nurses. I also spoke up when I was having a crabby patty sort of day. So if you’re dealing with some hard shit right now, go ahead and get angry. Explode in tears or scream or throw something (a soft something. Like an organ). Then take very deep breaths, wash your face and try to move forward. That’s all we can do. PS Optimism is a problem among doctors, too!
MAR 10
Show of hands, and be honest! how many of you do a regular self-exam?
Yeah, me neither.
LifeHacker posted a great article (with NSFW videos because naked is bad) about how and why doing a breast and/or testicular exams are important.
I’m also going to add in one more: feel your lymph nodes that are in your underarms. Most women (like me!) feel them and freak out thinking it’s a lump. It is, but it’s a “lump” that’s supposed to be there.
Get to know how they feel normally, that way you know what’s normal for YOU and what’s not. If you know what normal feels like, you’ll be able to tell your doctor what feels wrong. Do they feel stiffer? Larger? Smaller? Squishier? The more information you can present your doctor, the better they’ll be at figuring out just what is wrong.
Because why not?
Do you need a reminder? I know very few guys actually do perform a testicular exam. I still have some mustachioed testicles for sale. Throw ‘em at the man in your life and print out that article.
MAR 05
I’ve been feeling super down and bummed out the last few days. One of my friends is in hospice. She’s 37. It’s so fucking unfair.
I’ve gone to martial arts class to get out my frustrations, I’ve meditated and prayed, I’ve journaled out my feelings.
In short, I’ve done exactly what I would tell a ninja training client to do.And I still feel bothered, uncomfortable and plain ol’ stuck. Just slightly less so. Which makes me feel like a fraud, like I have no idea what I’m even doing.
Talking about it with a friend, I realized that it’s more than OK to admit that I’m just plugging along in life. Too often, the Internet self we present is an idealized one (think: Pinterest Perfect) where we have the answer for everything.
This is my problem with life coaches and self-help gurus. I want to be helpful to other people because it energizes me. And I hate seeing folks in distress or trying to muddle their way through a situation (like chemo!) I’ve been through already. My driving philosophywith this blog and with Survival Organs: you’ve got the right answers deep within you. It just takes some work and help to pry them out of your head. And the “right answers” aren’t immediate cures, they help you regroup, reassess where you are and put you on your feet so you can keep going.
Which was a great reminder. The fast tips I used isn’t going to make the grief go away. It’s not supposed to be a miracle cure! It’s about taking care of myself enough that I can keep going on and not fall into a horrible depression. They’re there to help me keep thinking clearly and let me go do something productive-ish with my feelings. To do something more than just sit on the couch, gorging on bad food and then beating myself up.
So I’m going to keep breathing, writing and crafting. I’m also going to cry, think about my friend and what she means to me. And just keep going along in life.
FEB 28
I’ve been hearing and reading from my maker friends just how tired and overwhelmed they’re feeling right now.
This has been a long and hard winter for everyone. We’re all feeling the cold weather burn out and there’s more snow and cold to come.
So what do you need right now? Is it a permission slip to rest? Is it extra help? Is it permission to ask for help?
There’s a big stigma attached to asking for help. Is it a sign of weakness? Does it mean that your goals are too hard, too big or just not sustainable? Do you feel that asking for help means you’re a failure?
My knee jerk answer? HELL NO!
Taking a pause in our day, asking for help or just needing permission to regroup is actually a very healthy thing to do. If you’re running on fumes, your work will reflect that.
By building safety nets of getting help and resting, we’re investing in our own future. Take a break, give your brain a chance to power down a bit and replenish your creative stores. Then go back to the drawing board tomorrow. The results might surprise you.
Do you need help but you’re feeling so overwhelmed you can’t even think straight? Maybe I can help!
FEB 24
As a kid, my parents made me watch lots of Stallone, Van Damme and Chuck Norris movies. When they were feeling especially patriotic, I would watch Spanish dubs of Rocky IV so they could “show” and prove to me the evils of Communism and the good of Americans. Last week, I decided to sit down and re-watch the first Rocky movie, which did win several Oscars and launched the Sylvester Stallone’s career. It’s held up very well over the years and just like Jiro Dreams of Sushi, I found lots of life tips in the film.
1. A good coach calls you out on your slacking. Mickey constantly berated Rocky by calling him a tomato because he never lived up to his potential. While having someone call you names isn’t necessary, accountability is. Do you need a good corner woman? Let’s talk!
2. You’re a hero to somebody. Adrien was shy and withdrawn before she started dating Rocky. He saw her for the kind, smart and beautiful person she was. She saw him as the compassionate lunk-head he was. Everyone else thought they were crazy. Someone around thinks you’re a champ. What would happen if you see yourself through their eyes?
3. It’s not always about winning but about going the distance. When he was approached to fight Apollo Creed, Rocky hesitated before accepting. Then he realized this was his only chance at winning a title. His goal was to get in the ring with Apollo, even if he lost, he said, he just wanted to try. Go and try and don’t worry about the results.
4. If you can make up flashy quotes and bad puns on the spot, the public will love you.Okay, maybe it’s just me. A punny pugilist? Be still my corny heart.
5. Sometimes, you gotta use what you got, even if it ain’t glamorous. Rocky couldn’t afford to train at a fancy gym with high-tech equipment. So he used what he had, which was slabs of frozen meat and the steps of the Philadelphia Art Museum. It was free and good enough.
6. Pick a theme song. Keep it blasting. I don’t care if it’s “Eye of the Tiger” or “Gonna Fly Now” or Destiny’s Child “Survivor.” We all need a theme song to keep us fighting. Whatever gets your blood pumping, embrace it and sing it at the top of your lungs.
Ah Rocky, you’re no tomato, you’re all heart. I’m probably going to “skip” ahead and go straight to Rocky Balboa, the last in the series. What’s your favorite inspirational-sports-movie?
Do you need some help getting motivated? Do want to feel like you can tackle any steps? Let me be your ringside coach! Click here and start the conversation.
FEB 19
On Monday, I was featured on Sarah von Bergen’s Yes and Yes blog. It was a great interview to participate in and it drove a lot of traffic to here and the shop. A huge feather-in-the-cap, right? Yeah, well, I was really bummed out on Monday for a lot of different reasons.
The things I was brooding over were all things that were out of my control.
(Does that sound familiar?)
I knew I had to get out of my head and back into the world around me. When I start to ruminate, I can talk myself into a worse mood. And the mindfulness techniques I know just weren’t helping me out at the time.
So I tried something else, something more immediate, something physical that would let me just get rid of my worries. I ripped a page out of my notebook and I began to write. Every worry, every thing that made me feel bad, every last “I wish”. I scrawled it out, penmanship be damned. It was basically word vomit. And it felt so good to purge myself of all of those hurts, can’ts and wants.
After I was done, I tore up that piece of paper. I ripped it into long strips and tore it again. And then I set it on fire. Carefully, of course, and in the sink in case things got out of control. I let it burn and take away all of those bad vibes. Once there was nothing else left, I felt so much lighter.
Do you write out your frustrations? How about you joys? It might make you feel (slightly) better!
I’ve had my favorite album ever, Bruce Springsteen’s Born to Run on repeat today. I’m not sure what sparked this nostalgia. Missing home, going through my Spotify playlists, and thinking about my upcoming 29th birthday.
See, the weird thing about chemo that no one told me was that when it’s all said and done, you come through the other end totally different from how you entered. So much so that I’ve had I have trouble both connecting to my past and think about the future. I find it actually very difficult to picture what I want, dream or even hope for the next year or two or ten. Oh, there are things I would like and I’m working towards but I can’t really visualize those things.
I wish I could say that this has given me a zen-like approach to life. For the most part, it has. A lot of life is just leaning back, trusting the rope and celebrating the small stuff. And a lot of the meaning I’ve found, I’ve had to work hard at but don’t ask me what my five-year plan is. I can’t think that far ahead!
Do you have a five-year plan? Is it even worth planning that far ahead?
FEB 12
Yesterday on Twitter, I was talking about resisting the urge to make an English Paper Pieced quilt using 1/2″ hexagons. The whole thing would be hand basted and sewn together. I’d probably attach the top with the batting and backing fabric by machine, though.
CraftyPod Diane (the person who introduced me to EPP) made a great point about projects like the (knitted) Bee Keeper’s Quilt:
— CraftyPod (@CraftyPod) February 11, 2014
That last half blew my mind. A “craft of many small celebrations” is also what life is. Every little bit that we do, every inch we fight for and mountain we climb
is cause for a celebration.
is cause for a celebration.
Yesterday, friend of the blog Grace Quantock wrote this:
You are so much more than any illness ever could be. Whatever illness you have has nothing on your amazingness. You can relegate the illness down to the footnotes. After all, you are the adventure story! (Read the whole thing here.)
Even if you’re not chronically ill, you can easily replace “mistakes” or “missteps” for “illness.” Tweet: You are so much more than any mistake ever could be. Perhaps, right now, you need to thank your body for the things it is currently can to do rather than cursing it for what it cannot do.
Learning to do this is difficult and involves a lot of tiny steps kinda like cutting out hexagons or rolling mini-skeins into a ball. And you’ll feel like you’re getting nowhere because you have two hexies down and approximately six million more to do. And then one day, you’ll put everything together and see the big picture. That you’ve made progress.
Craft small celebrations into your day. Thank your lungs for breathing as best as they can. Close your eyes, take a pause, and keep on’ stitchin’. Or truckin’. I won’t judge. (Hey, are you still stuck? That’s ok. If you want help, let me know.)
FEB 10
(And no, I don’t just mean Brita filters or Instagram filters, but those are also good filters.)
I’m talking about the filters I use to make choices every day. Tara Swiger touched on this last week and I mentioned my favorite filter to use: energy. It’s one of the biggest components to becoming a zen-like emotional ninja.
When I’m asked to do something, to join a program or even faced with what item to cross off my to-do list I have to think, “Is this energizing?” Whether you abide by the spoon theory or not, I think it’s an important question to ask yourself and it’s one I ask my ninjasto use.
Here are some of the questions I consider:
- Will this/does this bring me physical energy now or after I’m done? This is a great one for when I’m feeling lazy. I know I’ll feel more energized after I’ve done chores that I dislike.
- Will this make me feel spiritually energized? I may not want to put on pants right now but if I do and I go and see my friends, I’ll feel happier. This has also helped me limit my consumption of crappy television and deal with Internet jealousy.
- Does this bring mental energy? I really love watching Dr. Phil. I’m really ashamed of how much I love his stupid show. I watch it and end up yelling at the TV because he’s a jackass almost all of the time. By the time the show ends, however, my brain feels bloated and gross. It doesn’t bring me mental energy, in fact, it drains it! So I limit how often I watch his show. If it doesn’t make me feel smarter, give me a better understanding of a subject or spark ideas of my own, I limit to how often I indulge in it.
I’ve become very protective of where and how I expend my energies. I don’t want to be a total shut in but I also don’t want to run myself ragged. By slowly applying this filter, I’ve been able to figure out what the balance looks like for me. Do you have a decision making filter? How do you use it?
Today is World Cancer Day! In celebration (umm..?) here are some of my favorite local and national resources. You can also read more about my cancer story here and by clicking on the “chemo” and/or “cancer” tags over on the right.
Local
- For North New Jersey I loved my care team at Hackensack University Medical Center’s John Theurer Cancer Center. I was (sometimes) seen by its chairperson Dr Andre Goy. Francophiles be ware, he speaks French *very* quickly. My main doctor was Dr Anthony Mato who continues to be an amazing doctor. Love him, can’t say enough good things about him.
- For Nashville, Tennessee I received follow up treatment at Vanderbilt-Ingram Cancer Center. My doctor there was Dr David Morgan again, another great doctor. (I’ve been so lucky!)
- I also was an active member of Gilda’s Club of Nashville. They have a special group for young adult cancer survivors and I miss those ladies terribly. The workers and volunteers there are amazingly kind and patient. If you have been touched by cancer in any way, they are a great (and FREE!) resource to tap into. I stopped feeling so alone when I was a member there.
National
These are mostly online resources that helped me.
- Stupid Cancer offers support and aid to young adult cancer survivors and their parents. They also have a yearly OMG! Cancer summit in Las Vegas. Watch a bunch of a chemo patients get drunk and reenact The Hangover for a week.
- First Descents sent me on a free trip to upstate New York to go rock climbing. All I had to pay for was workout clothes. They put us up in a very swanky house with two (!) personal chefs, we had two camp Moms to take care of us, an FD rep and a nurse. Oh and nine of my now special friends. It was an amazing trip and you can read about the details here. Not into rock climbing? No probs! They have programs for kayaking and surfing.
- The Leukemia and Lymphoma Society sent me a huge package of information when I was diagnosed. They also offer advocacy services (for when your insurance refuses to cooperate) and they gave me a check for $50, randomly. Yay, free money? If you’re into marathons, they also do Team in Training as a fundraiser.
- Lymphoma Research Foundation they paired me with a buddy (Hi, Tanya!) who helped listen to me and made me feel a bit more normal. I’ve, in turn, been a mentor and buddy to someone else.
- American Cancer Society has live support for you to call and cry to. I did that once and the person was very helpful and sent me more information about what to do post-chemo. I was also offered free rides to and from all of my appointments.
And if you, or someone you know, just wants to talk to someone who has been there done that, send me a message. Do you have any good resources to suggest to others?
JAN 29
I think of my life as having two big eras: before cancer and after cancer. BC me was really unhappy with who I was, how I looked and what I stood for. I wanted to start all over and try to become someone else. Someone prettier, cooler and more together than what I was. My wish was granted; the rug was pulled out from under me.
After chemo finished up, I had a lot of thinking ahead of me. The doctors assured me that I was going to live, but they didn’t tell me just how I was going to go back to living. And what the hell did being “alive” mean now?
Then it hit me. I had to wrest meaning from the jaws of this nightmarish monster. This was my chance to start over and become the person I wanted to be, but I would do this safely, correctly, and lovingly. My pain and suffering were justified now. By losing my hair, I learned to love it. By losing my ability to breathe deeply and painlessly, I learned to love my lungs. By losing my period, I learned to care for my ovaries.
I started by acting like someone who has their shit together. Then I branched out into feeling really happy when my body started repairing itself. I embraced my growing in hair, strange looks from strangers and all. I challenged myself to walk a little taller and bring beauty into the world.
A few months of doing those things, I was hit with another epiphany. By doing all of these things on a daily basis, I *was* practicing self-care. It wasn’t just a lie I told myself, I was really doing it. I learned that it wasn’t just ritual or a habit of thinking for the short-term. This is how you practice self-love all day, every day, for the rest of your life.
Duh.
So now I take stock and make time to:
- try new things and go on bold adventures
- read a little bit every day
- be creative, be messy and make mistakes
I make time in my week to do these things not just because they’re fun but because it’s the secret to being a cool-as-a-cucumber-totally-chilled-out ninja. What do you need to do more of to feel better? Do you need help figuring it out? Let’s talk!
JAN 24
Subtitle: Update on my cardiology visit. Hashtag hallelu!
Yesterday was a day brimming with good news. The biggest was my follow up cardiology appointment.
The tl;dr is this: I’m FINE! My heart is fine, my valves are fine, there’s no scarring, no nothing.
I’m going to still be monitored on a regular basis for the next year just to be on the safe side (and get some data down), if I maintain looking this good I won’t need to be seen ever again!
Best of all, I was able to keep my composure and I got my all of my questions answered. Here’s how:
I keep a small notebook with me and I write down all of my questions the night before. While the doctor’s talking, I’m also busy taking notes.
By taking notes and repeating back what I’ve written down to the doctor, I am confirming that what I’m hearing is correct (active listening!) and I’m more likely to remember what she said later.
Towards the end of our appointment, I also make sure to go over the questions I had the night before. Most of them were already answered so I summarize what she said earlier and I ask for more clarification if I’m still unsure about anything.
You are your best advocate, if you don’t understand something, say something. Click to Tweet this.
I have no shame any more in asking for more detail or for clarity. I usually jokingly say, “Explain this to me like I’m five, please.” I am mindful of their time, so I do try to keep it brief. At the end of an initial consult, I make sure to get their business card and their assistant/nurse’s card as well. I also ask if I may email them on the off chance I have more questions. I haven’t had a doctor say no to me just yet.
Do you take notes when you see the doctor?
JAN 21
Frequently Asked Questions:
- What are they? They are hand sewn and stuffed organs with cute faces.
- Organs? Yes, organs. As in body parts. Like hearts, lungs, and livers.
- What’s the point? To make people feel like they have permission to laugh at whatever they’re going through.
- What do I do with it? Whatever you want. Hug ‘em, squeeze ‘em, punch ‘em or toss ‘em across the room. They’re tough enough to take whatever you can dish out. My organs are made from 100% cotton fabric so you can write all over them with a Sharpie.
- I don’t have cancer, is this for me/can I still buy it? Totally! It’s for anyone who has ever looked in the mirror and said “Body, why are you doing this to me? I thought we were a team, bro.” Or you can buy one and gift it to a friend who needs a pick me up.
The last semester of my junior year of high school (Spring 2002) I got a mohawk.
That’s a real Polaroid picture!
I was really deep into punk rock at the time and I wanted to do something shocking that was also legal. (I’ve always been a goody two shoes and super anxious about getting into trouble. I hate that I’ve returned library books late.) So a mohawk seemed a safer and less expensive bet than industrial piercings or a tattoo.
The reactions I got from people were surprising. I expected to hear how weird it was (I was not popular in high school) or have people ask me “Why?” Instead, I had people asking me, “What happened to your hair?” (It ran away and joined the circus. I got it cut, duh!) Or, my favorite reaction, “Nice hair cut, puta.” In Spanish, “puta” means slut. I had to laugh at that one; I had no idea that mohawks were a sign that I was ‘easy’.
Stupid questions aside, I learned that sometimes no matter what you do, some people will never be happy with you. Stacey over at Fresh Stitches has a bunch of great tips about negating Negative Nellies.
But what if all those negative words are coming from you?
I’ve wrestled with this all my life. Earlier this month, I was feeling really down about where I’ve been, what I’ve done, and where I’m going. I was thinking about all of this pretty heavy stuff while organizing my office and found this photo. Then it hit me, “Why don’t you put on a metaphorical mohawk?” At this stage in my life, while I still list the Sex Pistols, the Clash and the Ramones as my top three favorite bands, I’m not going to sport a mohawk.
That doesn’t mean I can’t answer those voices with the same snark and logic that I answered back to real people.
Some questions I’ve been asking those Negative Nellies have been:
- “Who are you?” Is this just a criticism I’ve heard from someone else about a different person that I’ve internalized? The answer has been quite surprising. (This goes along with “consider the source,” is that person projecting their fears on you?)
- “What’s really going on?” Am I feeling nervous about something? Am I feeling vulnerable? Am I just misinterpreting a situation?
- “What’s the outcome I really, honestly, deeply want?” What is the (negative) outcome I’m afraid of happening? What’s the (positive) outcome I’m also afraid of happening? And finally, what is the most likely to happen?
These questions are very open-ended and the answers that have bubbled up out of seemingly nowhere have been enlightening. Put on your metaphorical mohawk and answer the haters directly. You are who you are and they need to accept that.
JAN 07
In my archives, I wrote a post about the Julia Cameron book The Artist’s Way
and some of the things I learned after twelve weeks of consistent morning pages. The book (which I should reread) is great about explaining why and how everyone is an artist regardless of mediums. But it’s so hard to believe that, isn’t it?
and some of the things I learned after twelve weeks of consistent morning pages. The book (which I should reread) is great about explaining why and how everyone is an artist regardless of mediums. But it’s so hard to believe that, isn’t it?
I’ve been trying for a year to get into the habit of art journaling. Over at r/journalingisart, one Redditor pointed out that there are very few blog posts that talk about the downsides or frustrations that can come along with any sort of art practice. So here are some of my frustrations:
I’m really good about keeping a word filled notebook. In fact, all of the notebooks pictured here are full of words. Words are my friends, it’s how I think. But I really want to start thinking more visually. I want to be able to express myself with pictures rather than words.
So I do my best and I try. And I hate what I come up with so I tell myself that I’m not really artistic and I should stick to words and knitting. But there’s that unfulfilled longing to be more comfortable with fine art.
How can we let go of this baggage? For me, it’s about doing my best to set aside self doubt and move forward anyway. Perhaps for you, it’s to approach things as a child would.
What do you do to let go of your baggage?
JAN 06
After seeing FreshStitches and WhileSheNaps post about their financial wrap ups (mega inspiring, people!) I wanted to chime in from a new person’s perspective.
I declared Survival Organs open for business in August, with my crochet pattern up before then (and $40 went to Stupid Cancer, thanks!!) My first idea was that I could sell finished crocheted lymph nodes as pins. But after making a bunch I realized I wasn’t enjoying them, they were taking too long to make despite their size, and (most importantly) my wrists were killing me.
So I experimented and tried making them out of felt. And, quite frankly, they sucked.
The face was right and my blanket stitches are pretty even, which I’m really proud of. But overall? Not what I imagined and again, not very efficient.
Then it dawned on me: Make them REALLY big and out of fabric. These three were born in late August.
A trio of lymph nodes
Since then, I’ve made pink lymph nodes, thyroids, testicles, white blood cells and a custom order pancreas. I’ve even taken my mascot, Lymhttp://mixedmartialartsandcrafts.com/wp-admin/post-new.phpphy, out with me rock climbing and he’s collected autographs.
The best result about totally changing up my design? I went from having one sale to five!My views have gone up, more people have been making it as a favorite and have messaged me to say how cute they are.
While I’m still very much in the start up phase of my business, I’ve managed to make a $6 profit. It’s hardly enough to buy a small latte at Starbucks, but it’s amazing for only four months of work!
By staying open to trying out new things, I’ve been able to come up with a plan that’s low cost, fast and more fun to make. If you’re determined to start up your own Etsy biz, take a hard look at what you want sell and how you make it. By staying flexible, viewing everything as an experiment, and listening to my body’s pain signals I’ve found the right formula for my success.
No comments:
Post a Comment