07 February 2018
JAN 03
Do you remember having to buddy up with a classmate in elementary school? It was a quick way to do a head count and make sure that small children don’t wander off. I remember this system dropping off after the age of 10.
Now, as an adult, I’ve found that this system is still a great idea.
Yesterday, I had an appointment with a cardiologist. This is my first time since my cancer diagnosis that I’ve had to see one. I had a check-up echocardiogram done in November and the results so far are less than stellar. Next week I go for an MRI and a pulmonary function test. When those results come in, I’ll have a better idea of what level and type of heart failure/damage I have. Thanks, cancer.
What does this have to do with the buddy system?
I go to most of my appointments alone but this time the SGT came with me. I’m so glad he did. When the cardiologist mentioned putting off having a baby for a little while, I broke down in tears and I stopped listening.
By having someone with me, they were able to listen to the doctor and ask the questions I was too overwhelmed to ask.
Later that night, he explained what the doctor said. While getting pregnant while on beta blockers is not ideal, this class of drugs isn’t contraindicated. That means, it’s been linked to a lower birth weight but it doesn’t necessarily mean that the fetus will have severe birth defects. She also said that we could suspend taking the drugs in order to get pregnant.
If you’re facing something scary, who can you take along as a life jacket? Who can you trust to be your eyes, ears and mouth when you’re too busy treading water?
DEC 31
Way back in January, I posted my theme for this year: “Recalled to Life”. A nod to Dickens‘ A Tale of Two Cities. The phrase was perfect for this year, I finally started feeling strong enough to chase after dreams and enjoy life post-chemo.
Milestones and accomplishments:
- I got into art journaling, zentangling and sketching in the earlier part of the year. I’ve let that go a bit but I am getting ready to get back into gear.
- Once again, we picked up and moved to the Midwest. The SGT and I bought our first house, so we’re committed to living in Minneapolis for a good while.
- I’ve gone rock climbing, wrote a book, and made some friends.
- Oh yeah, I’ve also opened up an Etsy store, wrote a bunch of guest posts and I’m offering my ninja coaching services!
It’s been a very full year and I am sad to see it go. BUT! I am really looking forward to 2014 and I’m hoping it’s half as cool as this year. Today, I’m going to break out my paints and pencils and mull over the theme for 2014.
What was a recurring theme for 2013? Is there a big action word you want to use to describe 2014?
DEC 23
What else can you do with a Survival Organ? You can get your friends to sign it and then put it up as a Christmas ornament!
DEC 17
I have found out the secret to having the best, most memorable, Martha Stewart level Christmas in the world. This secret applies to other high stress holidays, too.
Are you ready?
I’ve gotten rid of all expectations!
This doesn’t mean that I’ve grumpily announced that no matter what I do, everything will be crappy. That attitude is just not cute and guarantees that you and those around you will have an awful time.
I’m learning to just let things be good enough. When we get too wrapped up in perfection, we get nothing done. So this Christmas, I’m doing the best I can to make it the way I want it to be.
I baked chocolate mint chip cookies and the bottoms were a little burned. They’re still delicious and my neighbors were happy to receive them.
I’ve set up my planner for 2014 and it’s not the perfect system but it’s good enough.
This Saturday is my morning of quiet contemplation. I’m going to spend the time thinking about what themeI want to set for the coming year. I know that next year, like previous years, will be messy, full of mistakes, fabulous times and moments of wondering just where the heck am I headed? And that’s fine! That’s part of the adventure of life.
Do you need help embracing less-than-perfect? Let me know and we’ll map out a game plan together.
DEC 11
It’s -8 degrees Fahrenheit out today (that’s -22 for your Celsius folks!) and I’m feeling cold and silly. I’ve written some knitting haikus before but this time I’ve fitted Zen wisdom for your inner knitter.
Do you have any purls of wisdom to meditate on? Don’t forget to sign up for my Day of Quiet on December 21st. Or set up a one on one ninja training session with me.
DEC 09
On Saturday, my local church offered a day of rest and silent meditation. It was billed as a day of quiet contemplation of Advent and as a way to relax in preparation for the chaos that is (sometimes) Christmas. And as an extra bit of care, hot soup was served.
Unfortunately, despite writing it down, I totally forgot to go.
That doesn’t mean that I can’t do that on my own!
I am going to declare that Saturday, December 21, 2013 from 10am central to 12pm central will be spent in quiet contemplation. And it doesn’t have to be about Advent or anything religious–Christian or otherwise!
Why that Saturday? Well, it’s the one before the Christmas Eve/Christmas Day hoopla. Television commercials are going to be doing their best to whip people into a last minute shopping frenzy and you’ll probably be feeling the crunch to finish up on metaphorical cookie parties.
Join me for a break! Sign up for this campaign below. The week before you’ll get an email of materials around the house to gather. Then the Friday before, I will send you an email filled with ways to meditate, points to ponder and some of my favorite sources.
So sign up and make a commitment to take a break, even if it’s just for a half hour.
* = required field
DEC 04
This week marks my first Minnesota snow storm. It’s caught us here at the Dojo by surprise and I’m sending up a message of thanks to Amazon’s next day shipping. I spent most of my morning slowly shoveling my snow before things get too crazy.
It was hard work and required more energy than I imagined. Three years ago, I was slowly inching towards the half way point of chemo and it was a very snowy winter in NJ. I could barely hold my head up most days, let alone a shovel.
I had to take many, many, many breaks from hauling and shoveling to catch my breath, steady my heart beats and gather my will. I wanted to quit and I’ve been cursing Jack Frost. I remembered my rock climbing trip and how there were times I wanted to quit. How near to tears I was because I just couldn’t quite find a way to get up the rock wall. But I kept going.
And I’m still going…probably still shoveling as well.
DEC 02
Happy December! I am so very proud to announce that on November 29th, I won National Novel Writing Month! I gave up earlier in the week thinking that I just wouldn’t be able to write any more but I pulled through! I don’t think I would have been able to do it with out my collection of notebooks.
Before, during and after chemotherapy I wrote in my journals about what was going on, how I was feeling both physically and emotionally and what I was looking forward to. The neuropathy in my finger tips made writing (and knitting, holding chop sticks, and picking up things) difficult but I did it any way.
I am so glad I did.
My NaNo book is about my cancer experience. It’s been three years since I was last admitted into the hospital, those memories have either been blocked out or have faded away. I had forgotten certain moments or my time line, as I recall it, was mixed up.
I was able to turn to my notebooks full of those painful memories to get me back on track. My rereading and writing in those moments to my narrative, I was able to trigger other memories.
Reading through my scrawled notes, I was able to see when I went from feeling so angry about having cancer and having to spend so much time in a hospital to feeling more resigned at my fate and determined to see it through.
I don’t think I could have pressed on with NaNo if I didn’t think about finding my diary from that year. Present Vanessa is very happy that Past Vanessa kept up her writing habits.
Art journaling in the Gunks
Do you keep a diary or a journal? What ways has your writing habit helped you out?
To go along with the pointers I gave in my Holiday Sanity interview, I made up a handy dandy printable to give out to those well meaning but stupid people in our lives. Here’s “What Not to Say to Someone with Cancer”
Right click and hit “save as…” and print out a whole bunch. Keep ‘em in your purse or wallet. When someone says one of the above, you won’t need to come up with a pithy retort! They’ll be in violation of the social rules of not being a jerk.
If you’re still in need of figuring out what else to say to the chronically rude and/or stupid, call me and together we’ll come up with a plan of emotional defense.
NOV 22
I am very excited to present my newest (virtual) product: Unlock Your Inner Sensei.
What is it?
It’s a one hour phone (or video!) call with me. We’ll discuss what’s been bugging you and ways to fix it. You and I will brain storm ideas that work for you in your specific (and confidential) situation.
Okay, so what’s a sensei?
Sensei, in Japanese means “teacher”. It’s used after a person’s name to denote that they are a professional (usually with professors, teachers and lawyers). We all wish that we had a wise teacher or mentor to guide us, a Splinter to our inner Ninja Turtle.
But I say, you can be your own guru, you just need to tap into it.
So come along with me and let’s kick butt together.
NOV 19
One of my fellow Starship Captains contacted me about a custom Survival Organ. A friend of hers has pancreatic cancer and she wanted to know if I could make a new cancer-free pancreas. I jumped at the challenge and came up with Penny!
The fabric was not one I would normally choose since I prefer to use plain cotton. I think I’ve made it work pretty well, Penny looks a little like a cartoon bandit or bank robber.
If you would like a custom Survival Organ, send me an email or pick up a ready made one at the shop!
I’ve teamed up with Tara Swiger for a super cool interview. Her Holiday Sanity, which I’m working on, covers how to get through this hectic time of the year with some sanity in tact. It’s full of great tips, spaces to write out lists and ways to make that list seem less like a mountain of DOOM. Plus, when you pick up a copy, you’re also invited into a private (as in it won’t show up in your feed) Facebook group!
That sounds all well and good, but how do you get through the holidays when you’re Sick and Tired. It’s only mid-November but I’m already hearing from people that their Holly Jolly gauge is broken and all they want to do is sleep their way through the next few months.
It doesn’t have to be that way!
Watch the video to find out:
- How to make the most of the season, even if you’re not feeling it.
- 3 ways to make the holidays more enjoyable.
- How to talk to someone who is having a tough time this season.
You can pick up your copy of Holiday Sanity today and $5 of every kit sold goes to My Very Own Blanket.
I wrote up a list of things to say to a cancer patient last year. I’ve been going through my archives to see what could do with an update. I think these six things apply to any friend who is sick, whether it’s cancer or exhaustion.
I’ve gone through and I’ve turned that list into a handy table for you to print out and give to your friends. You can even pin it on Pinterest!
NOV 05
I love reading Abby Glassenberg’s blog, While She Naps. Not only have I learned quite a bit about softie construction (and the legal side of soft toy making too!), I’ve also had a chance to think more about my business and myself.
She wrote a terrific post about some of the rules she has in place both personally and for her family. For example, no cartoons before homework is done. (When I was little, I wasn’t allowed to watch the Simpsons until my homework was done. Bill Nye the Science Guy was on right after school, so that was ok to watch before because it was educational.)
Sick by Jaysun via Flickr
I’ve been thinking about my own rules and the rules my friends have when it comes to their health. “I’ll sleep when I’m dead,” is a popular one. As is, “I can’t be sick. I have too much to do.”
Does that sound familiar?
While it’s a common pattern of thinking, that rule is awfully dangerous. It opens the door for infections to get worse and by not resting when we need it, our immune system stays suppressed. Which means it’s easier to get sick again!
What would, in all seriousness, happen if you were selfish enough to take care of yourself? Would your family, friends and work suffer if you broke the rules and let yourself really and honestly rest? What if you did delegate and just let the dishes pile up and the floor remain dusty while you felt run down?
It’s difficult to imagine, but I don’t think it would be too impossible. Give yourself permission to let go and feel better.
The node minions wish you a happy and cancer free Halloween! You can pick up your own node here and the plastic toys come courtesy of Tiny Things Are Cute.
OCT 30
October still has one day left but I’ve got quite a bit on my plate for November. First, it’s NaNoWriMo time! November is National Novel Writing Month and this year I’m really committed to participating and finishing. That means writing 50,000 words in 30 days or 2,000 words a day. I’m keeping the subject of my writing a secret for now but I’ll be posting my daily word counts over here (and on Facebook and Twitter) if anyone would like to cheer me on.
The second big project is making up testicles for Movember. Not many people realize that testicular cancer strikes men between the ages of 20 and 39. While the diagnosis rates aren’t as high as prostate cancer (1 in 6 men will be diagnosed with prostate cancer after the age of 50) it is a young man’s disease and one that isn’t talked about as much.
So I’m doing my part to get people talking by sticking a ‘stache on my balls.
I mustache you a question but I’ll shave it for later.
I’ll be finishing up my first batch of balls and adding them to the shop on Friday November 1st.
What are your plans for November?
OCT 28
Full disclosure: I was given a free copy of this review because Heather Ordover and I are both Captains in the Starship. I have not been paid for this review, I just like the book!
I started Heather’s newest novel, Grounded, with some skepticism, to be honest. I love MamaO and I’m a huge fan of her podcast, CraftLit. And I really do love to knit, current funk aside. However, I really can’t stand fiction books about knitting. The very few I’ve tried to read have felt so hokey with the author injecting contrived knitting metaphors every chance s/he gets. For me, the whole plot seems nothing more than an excuse for the author to mention that s/he is a knitter. Oh and did you know they know the difference between Fair Isle and intarsia? Did they let you know that they’re a knitter? Because they are.
I should have had more faith in Heather’s skill as a writer. She answered my unspoken prayer for a novel that prominently features knitting without cramming it down the reader’s throat.
The protagonist, Hannah Rose, is a 17 year old knitter from Arizona who is whisked away to pre-September 11th Brooklyn after she accidentally set her ex-boyfriend on fire. With her mind. Oops! The book, part one of a series, focuses on Rosie’s psychic training and budding romance.
I also avoid books with teenaged protagonists because, like the knitting thing, most authors have no idea how to write them well. Even JK Rowling. They’re either caricatures of angst (Harry Potter and Ronald Weasley this means you!) or far too mature and wordy (Dawson’s Creek) to be believable. Hannah Rose and her friends are neither. HR is spunky! And feisty! She has a sense of self worth. Most of all, she isn’t obnoxious and acknowledges when she’s being a snot.
Heather Ordover knows teenagers and knows how to write them so they appear far more human than they sometimes act. Her women and girls are written like normal people as are her male characters. I sometimes feel like there is recently a deficit in authors who can write normal characters. Thank goodness for Mama O. She writes people who are interesting, quirky but not strange straw men.
You can order either a hard copy or ebook over at Heather’s shop and pick up some Grounded inspired sock patterns while you’re at it. She’s also inviting anyone who feels inspired to design patterns based on the series and charge for them. So break out the knitting needles and create fan fiction patterns.
OCT 22
Personas by nnova via Flickr.
One of the fun parts of a First Descents trip is coming up with a camp nickname. It needs to be a good one because all week you’ll be called by that name and the staff will only know you by that name for future trips. After careful consideration, I decided on the name Ninja. It fits in with my overall manifesto and who I wish I was.
By the end of the trip, I wasn’t wishing to be Ninja. I was Ninja.
It’s been a little over a month since I came back and I’ve been thinking more about my persona. Carl Jung defined a persona as,
a kind of mask, designed on the one hand to make a definite impression upon others, and on the other to conceal the true nature of the individual.
What is it that I want to conceal? What sort of definite impression do I want to make on others? Is adopting a persona all that terrible, if you’re using it for good and not evil?
It’s quite hard for me to glean lessons from our failures, admit when we’ve succeeded or asking for assistance from others. But it isn’t that difficult for Ninja.
That week as Ninja, I was able to put myself in some really physically frightening (for me) situations, try to re-climb a passage that was emotionally difficult and open myself up to vulnerability. I’ve been home for a month and I’m trying to add those parts of Ninja to my permanent self. Letting myself be open to new and scary situations, reaching out to form connections with others, and being okay with uncertainty.
Masks by Giant Ginko via Flickr
So what does your persona look like? Is it someone who takes healthy risks? Is it someone who tries new things, even if she feels like she’ll look silly? Does he put up and enforce healthy boundaries? How can you integrate the traits you wish you had into your real self?
Yesterday, I got the best news a cancer survivor could get. Well…best news after “you’re in remission!”
Three years ago last month, I was diagnosed with an aggressive form of Non-Hodgkin’s Lymphoma. I finished chemotherapy in January 2011. Yesterday, my oncologist said that Monday’s CT scan was my last scan ever.
As in, no more scans to see if my cancer has returned.
She feels confident that after three years, it’s not going to come back.
They’re not throwing around the word “cured” yet but the odds of recurrence is very low.
Not only am I better, I’m super better.
And honestly, I’m not sure how I feel about that. I feel so lucky and a bit like I’ve been kicked out of the nest and not entirely sure that I’ll learn to fly before hitting the ground.
For now, I’m taking some deep breaths and just focus on feeling thankful.
OCT 15
Helping Grandma walk by Rosie O’Beirne via Flickr
I’ve been mentoring a newly diagnosed lymphoma patient and my biggest advice to her is to find a professional to talk to after treatment finishes.
Why?
The biggest misconception that “healthy” people have is that after treatment is over and the doctor declares you to be in remission, it’s back to business as usual. Well meaning family and friends would ask me if I felt excited to “get back to normal”.
I learned quickly that there is no “back to normal” after something as life changing as cancer. It really rocked the foundation of who I perceived myself to be. While I still feel like I’m scrambling to make up for the year I lost to cancer, I’ve taken this time to rewrite my story.
And I can’t do that alone. Which means YOU probably can’t either. And that’s more than OK.
In an unscientific study I conducted via Facebook, after chemo mental health care is ignored or plain not brought up by patients and oncologists around the world. I’m not sure why that is.
My hypothesis is that our eagerness to “get back to normal” makes us reluctant to talk about anything that’s not “fine.” I’ve done this myself. The SGT told my oncologist, Dr Morgan at Vanderbilt University (he’s awesome!), that I was catching every cold and flu that came my way. I insisted that I was fine. Sure I was always sick but what difference does it make?
Well, a big one. He ordered six rounds of immunoglobulin therapy to help boost my immune system. It’s been about a year since I did IVIG and it’s helped tremendously. In my rush to put cancer and chemo behind me, I tend to overlook when I’m not okay.
What do you do when you’re not okay?
To borrow a page out of Brene Brown‘s book, The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are, I get deliberate, I get inspired and I get going. For me that looks like this:
- I recognize that I’m not feeling okay. And I give my self permission to just sit with that feeling, as uncomfortable as it is.
- I break out either the knitting, my sewing machine or my paints and I keep my hands busy.
- I start talking about it either in person, via email or on this blog. While being so public isn’t for everyone (and that’s fine!), talking to someone, like other survivors or a professional therapist, is an important aspect of feeling better.
Do some deep thinking and come up with some ways to feel a bit better. And if that means reaching out for professional help, remember there’s no shame in doing so.
OCT 11
Yesterday’s email from Tara Swiger’s newsletter talked about a scary thing that happened to her last weekend. She was teaching her Map Making class when a student pipped up with this comment:
“[...] what’s to stop people from ripping off any idea I have? I mean, you’re not the first person to tell people how to get stuff done, this is all in a hundred books already, no offense. You’re not even the first person to have pink hair, but are you paying the person who had that idea first?!?”"
Ouch. (In my life, I’ve found that anyone who starts/ends a sentence with “no offense” or “with all due respect” really means, “I think you’re stupid and wrong.”) Here’s someone who showed up late to a free (!) class and pointed out every thing that she sometimes worries about.
What did Tara do with this unwanted, unrelated and unasked for criticism?
She took a deep breath and moved the conversation forward and way from his criticism.
Here’s my own similar story.
by Da Puglet via Flickr
When I announced the opening of Survival Organs on Facebook, I also posted in a private Non-Hodgkin’s Lymphoma group that my shop was open for business.
The very first comment I got wasn’t what I was wishing for.
A user I didn’t recognize left a comment saying, “Why would anyone want this? I don’t get the point. Good luck to you, I suppose.”
Not exactly the most encouraging of words to receive after doing something really scary. I wanted to write a really nasty (and public) comment chiding this woman for writing something so hurtful and downright rude. But I stopped myself and walked away from the computer. I went back and wrote that I agree, it’s a very niche product and thanking her for her good wishes.
Then something unexpected and really awesome happened.
I made my very first sale. And the person who bought it, left a comment on that thread as well. She said, “No way. These are so awesome. I’m totally buying one.”
I went from feeling like my worst fears were confirmed to realizing that my product isn’t for everyone. And that’s more than okay! Those who find my organs cute are my buyers and my biggest champions.
And that’s true for any business. There will always be critics but those who “get” you and your thing will be your return customers. The hard part is ignoring the haters (they’re always gonna hate) and growing the connections with your fans.
Have you experienced feeling like an imposter? What did you do?
OCT 07
October is Breast Cancer Awareness Month and the stores are awash in pink (and Christmas decorations). It drives me (and some of the breast cancer survivors at my First Descentstrip) crazy for several reasons:
- It’s sometimes a scam. The Better Business Bureau warns about “pinkwashing” scams. Some companies like to put out products in pink or with the pink awareness ribbon on it but they’re not actually donating any money or resources to breast cancer charities. So when you buy that kind of product, all that money is going to the company and not to survivors.
- The money donated gets capped at a certain point. You’re going to need reading glasses to read the fine print on product labels because sometimes the money donated gets capped off. As in once Company X donates $50,000 in proceeds, they’re not going to donate any more, even if they make $5 million from product y.
- Not all charities are charitable. The most notorious one is the Susan G. Komen foundation. According to a Reuters article from 2012,The organization’s 2011 financial statement reports that 43 percent of donations were spent on education, 18 percent on fund-raising and administration, 15 percent on research awards and grants, 12 percent on screening and 5 percent on treatment. (Various other items accounted for the rest.)They’re spending more on organizing “Race for the Cure” than they are on actually finding a cure. Charitynavigator.org rates their financials as a 59 out of 70; they’re not spending money the way they say they’re spending money.It’s easy to throw money at a problem and research needs funding in order to exist. On a smaller and personal scale, your time makes a bigger difference in the life of a cancer survivor. Do you have a friend with breast (or any other kind!) cancer? That friend needs you more than he or she needs stuff. Help them figure out ways to beat the blues, help them out by walking their pet iguana or anything else on this list. Mostly, be a friend and listen.If you don’t know anyone with cancer but you still feel the need to do something, call up your local cancer hospital/ward and ask about volunteering. When I was undergoing immunoglobulin therapy, there was a couple who would bring their therapy dogs to the chemo floor and let the dogs cheer people up.Even though I was in remission and IVIG was just to help boost my immune system, I still felt so scared and alone. Having a well behaved and cute dog just come and put her head on my lap made me feel like I was going to be okay. You don’t need to have a therapy dog to do something like that. Go around the chemo floor and see if anyone could use a glass of water or just a friendly face to shoot the breeze with. Cancer is incredibly isolating, a smiling face and a hand to hold becomes so precious when one feels so forgotten.
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