07 February 2018
OCT 20
I’m adding on to a list I previously wrote, “How to be a Better Stick”.
- Ask for a hot pack placed on your arm. The heat allows your veins to dilate and it’s easier for the phlebotomist to feel. Also, it feels nice since hospitals and doctors offices are freezing.
- If you’re allowed, drink a ton of water. The more hydrated you are, the better the odds of finding a good vein.
- Keep breathing. It hurts but holding your breath makes it hurt worse. I’m speaking from personal experience on that one.
- Lastly, if they still can’t find a vein for a blood draw or for an IV ask for a specialist! Most hospitals have a vascular specialist who has a portable ultrasound machine to help them find one that does work. At the very least, this specialist also has numbing gel that he or she can inject and take away the pain temporarily. It doesn’t make you difficult or a wimp to ask. You’re not a pincushion and you don’t need to be treated like one.
Need something to squeeze? I highly suggest one of my tiny organs. They fit in the palm of your hand and can take a lot!
OCT 17
- I’m hard at work restocking Survival Organs. I’m pleased to announce a new item: stuffed breasts! While technically not an organ, they are too cool to pass up. Get yours today!
- I’ve been enjoying posting work-in-progress pictures over on Instagram. Follow me, yes?
- This DIY resin and wire bracelet is blowing me away. Makes me want to try casting again.
- Caroline McGraw reminds us that perfectionism doesn’t protect us.
- I’ve been really into looking at people’s sketchnotes.
OCT 10
- I am obsessing over this interview between SeaweedKisses and Ryo. Her daily doodles in her Hobonichi planner are too cute and super inspiring. Perhaps in 2015, I’ll really commit to a daily doodle project.
- Speaking of daily doodles, check out this YouTube video.
- Self affirmations should be done in the third person. Apparently, Vanessa pays more attention to herself in the third person.
- I made a really really big thyroid. Does it make my neck look big?
- Do you have any Fab Friday Finds to share?
OCT 06
Saturday, September 27th Stupid Cancer held their annual OMGEast conference in New York City.
A “lull” in people
I had the distinct pleasure of attending and exhibiting as Survival Organs and I came away from the conference overwhelmed with positive feelings. Here’s some things I learned and why I wish I had attended sooner.
- The young adult cancer community is one of the most positive communities I’ve encountered. By nature, I’m reserved and not very physically affectionate. I think I got hugged over 100 times at this event and 200 fist bumps/high fives.
- Ain’t no party like a cancer survivor party because cancer survivors know how to party. This rides off of number 1 above, everyone there was determined to have a good time. I was too exhausted to go to the after party conference but from what I’ve seen on Facebook, it was a ball.
- I didn’t have to explain myself. I was surrounded by 250 strangers and I left with 250 friends. I didn’t have to explain why I used humor to cope with my cancer. I didn’t have to explain what cancer is, why I got it at 25 and what that means on my outlook. I felt, much like I did rock climbing at the Gunks, like I was accepted for who I am, who I was and who I will be. And that person is loved.
As I said in my newsletter last week, I feel like Sally Field. 
I read so much about being in front of your Right People, finding a “tribe” online
and the importance of fostering communities and not cliques. But to actually experience it? None of those articles came (or can come!) close to how it feels to be surrounded by people who love and accept you.
I read so much about being in front of your Right People, finding a “tribe” onlineand the importance of fostering communities and not cliques. But to actually experience it? None of those articles came (or can come!) close to how it feels to be surrounded by people who love and accept you.
OCT 03
I almost forgot that today is Friday! Here in Minneapolis, it is very blustery (what a great word!), rainy and grey. It feels like we’ve hit mid-autumn already. Here are my fab Friday finds for the week.
- I am home and recovering from Stupid Cancer’s OMGEast. There are lots of new photos on the adoptions page.
- I made a custom purple uterus (cuterus!) for Marianne.
- Science shows that people who keep a diary/journal overall have a better outlook on life. That includes cancer patients! I love it when science proves me right.
SEP 22
Guys, it’s been ages since I’ve knitted a stitch, let me be real. I think I found the book that’s cured my dry spell.
Click to view on Ravelry
Designer and podcaster extraordinaire, Elizabeth Green Musselman aka DarkMatterKnits has made it her knitting mission to design stuff for men and boys, a (let’s be real here) neglected demographic. And this book?
It’s more than just a pattern book. Your kids may want to steal it.
There are patterns but there’s also a story of a little boy who goes and defeats a monster named Frostbite in a Calvin and Hobbes meets the Ninja Turtles sort of way. He doesn’t want to wear a sweater (honestly, who did at that age?!) so his creative mom knits him a gi, pants, a bag, throwing stars and a pair of nunchucks.
And since the throwing stars and nunchucks are made out of yarn, no one’s eye will be poked out.
What I also really like is Elizabeth’s use of yarn. All the samples are knit with Berroco Vintage, an acrylic/wool blend that I’ve used before. It’s warm without feeling like a piece of plastic, it’s affordable, and it’s machine wash and dryable! I don’t understand designers who use very expensive and easily dirtied yarn for children’s wear. Kids are grubby and have a knack for getting dirty and ain’t no one got time for handwashing out mud and grass stains.
You can also try your luck at winning a digital PDF copy right here. Just follow the Rafflecopter instructions.
Good luck and happy knitting!
SEP 19
- I’ve been busy working while listening to CraftLit’s premium audiobook “A Study In Scarlet” by Sir Arthur Conan Doyle. Jon Scholes’ voice is dreamy, don’t you think?
- Why am I so busy? You’ll have to check the schedule to find out!
- Ravens! For October! In the mail! Send me one, please?
- I don’t sit in many meetings anymore but I love this idea of taking sketchnotes.
SEP 15
I’m hitting the road for the rest of September! Here’s where you can find me:
- No Coast Craft-o-Rama Field Trip Saturday September 20, 2014 at Silverwood Park, St. Anthony, MN. I’ll be at booth #21, stop by and say hi.
- Stupid Cancer’s OMG! East Saturday September 27, 2014 at New York Law School in New York City, NY.
I’ve got more shows and more news coming up in October! Be sure to come back here and see what’s happening.
SEP 12
- Are you on my newsletter list? Sign up today because I have some big news I’m revealing today!
- Tiny Tesla on a mushroom painted on a tea cup.
- “I love you very much and wish you luck. Wish me some too. Book is on page 592.”Ernest Hemingway to Marlene Dietrich
- I want this shirt.
- I’m a closet Whovian and love the way Clara Oswald is styled. I’m living for Fashion of Doctor Who. I also really like Peter Capaldi’s coat.
SEP 08
Are you newly diagnosed with cancer? About to go through chemotherapy? I’ve compiled a list of helpful blog posts about chemotherapy.
- To Wig or Not to Wig?
- Please don’t call me an inspiration.
- The Most Frustrating Thing About Cancer
- What makes a great chemo cap?
- Sex Appeal and the Cancer Patient
- What is lymphoma?
- World Cancer Day Resources
- What we’re not talking about after cancer is over
PS Need a hug? Or just a smile? You can buy one here.
SEP 05
- Do you listen to CraftLit? Want to chat about Charles Dickens’ Bleak House and Elizabeth Gaskell’s North and South? Saturday September 6, 2014 is your chance to talk to me and Heather Ordover LIVE over here.
- I need to make my own watercolor cat.
- I love Hugs are Fun’s origami crane pattern. So cute!
AUG 29
- I’ve been posting design sneak peeks over on my Instagram account.
- Karie from Fourth Edition wants to know what you do when perfectionism rears its ugly and perfect head.
- I’ve read 40 out of 52 books this year. Here’s what I’ve read so far. What have you been reading?
AUG 25
This week, I interviewed Johnny T (that’s him!) about testicular cancer, fatherhood and the history of daddy-blogging.
AUG 22
- My two favorite people want to speak at South by Southwest. Listen to their pitch and vote for them.
- I’m in love with this video podcast.
- I’ll be at the LoLa Art Crawl on Saturday and Sunday. You can find me at 3317 Minnehaha Avenue in Minneapolis. Come by and say hi.
- I’ve been sending out handmade postcards through Postcrossing. Sign up and you may get matched with me.
AUG 15
- Johnny T (That’s him!) bares his soul about depression and chemo. Keep tissues within reach.
- Why didn’t I think of that?
- I’ve been following Grace’s Garden Walk for a few months now. I’m shocked that she’s 17. I don’t think I had a tenth of the style and poise she had when I was her age.
- I wanted to collect stamps as a kid and I had a small collection. This makes me want to take it up again.
- A question for you all: Is bunting as signage still in or is it a craft show cliche?
AUG 11
This week’s interview is with Emily Sun. Last year, Emily was on a quest for stem cells and I blogged about it here. She’s got her cells and has been thriving in the year since. Emily currently lives in Australia with her husband and son.
Can you tell me a bit about your diagnosis story? How did your first bought with NHL get diagnosed/discovered? And then your later recurrences?
I find it really difficult to talk about this kind of thing. I just refer people to my treatment blog’s home page. One of the reasons I can’t really go into detail about it is because I am sick of giving any more attention to the diagnosis and “the whole cancer” thing. I fought it for nearly four years, that’s like an Honours degree here in Australia.
I’m looking towards the future and putting the past behind me. But in a nutshell, it was pretty typical of most young adult cancer diagnoses. I thought I was run down or stressed, so did the GP because I was a young mother and doing quite a few things at the same time. It turned out to be cancer. It’s why I just tell everyone who feels run down to going to their GP and ask for a blood test. Most blood tests are still free here in Australia – for now. Antidepressants do not cure cancer! I was stressed and anxious because my body was colonized by rogue b-cells!
How did you and your husband talk about this with your young son? Is there anything you’d do differently?
I was sick over three or four years, so I can’t really remember what we told him at the beginning. I know that a book called Mom Has Cancer really helped because it was about a boy whose mother had cancer and she survived.
It was a bit harder upon relapse. I had a lot of support from my family, the school community and friends, as well as the Australian Cancer Council. Both my husband and I have a therapist – this is subsidized by medicare in Australia.
The Cancer Council referred my son to a very experienced play therapist when we expressed our concerns about how he was coping with it all. All of these things helped.
I’m not the sort of person who has regrets anymore, so there is nothing I would do differently. We all just do the best we can at the time with the knowledge we have. I was very fortunate that I was so well supported.
Can you tell us more about what a stem cell transplant is? Why is it important for Asians/mixed Asians to get on the registry?
When I relapsed one of the doctors told me my only cure was to get donor stem– ie. the cells in our blood that have the potential to be any type of cell. That is why I went on this crazy global search for long lost and estranged relatives, and my friends helped me launch the Emily Needs Stem Cells campaign.
As I had my own stem cells stored and harvested the first time I got sick, my specialist decided to use them instead and radioimmunotherapy. I didn’t have the option of heading to the NIH for experimental T cell therapy even if I could figure out the logistics of it because I had CNS (involvement with her brain) involvement.
Once again, I was really lucky that one of two or three places Australians can access radio-immunotherapy here in Australia is at my local hospital. I had “hot-ritux” which is similar to Bexxar except it uses ritux not the other drug. I used to know what it was called but I’ve been consciously trying to forget everything I learnt about lymphoma. There’s really no use knowing so much when you’re not a doctor or a nurse. It’s all very new and experimental, but I guess all cures are at some stage. I had nothing to lose by trying this. It was a far better option than going for the allogeneic transplant.
Once again I was really very lucky that one on the doctors on the original team, he’s now my specialist, told them to harvest my cells the first time around for insurance. I’m so grateful that he did that.
I knew that it would be very hard to find an Asian donor for a few reasons, but the main one being minority groups do not really donate blood, let alone stem cells. Actually, I’ll let my more articulate friend explain:
I am really hoping that there are big leaps and bounds made in treating blood cancers in the next few years, so donor transplants will be a thing of the past.
I know you’re a talented pianist! Did you find music a good way to deal with stress? Why or why not? What does making music do for you (in general)? How does it make you feel?
I know you’re a talented pianist! Did you find music a good way to deal with stress? Why or why not? What does making music do for you (in general)? How does it make you feel?
I only started playing piano again when I got sick. I played in my teens like many Asian girls of my generation, but burnt out. I was stuck at home a lot and there’s only so many DVDs and downloads you can watch. I wasn’t able to focus on reading or very much else.
It wasn’t until I nearly died that I realized how much I love music across different genres.
It helps me express emotions for which there are no words and I think setting myself the challenge of learning something new throughout treatment made me feel alive. I was still doing something and it was very tangible. I took my keyboard into the transplant room with me and kept playing except on the few really bad days. I didn’t want to see anyone except the nurses, the volunteers and my doctor when I had the transplant. It was also a good way to bond with my son who had started taking piano lessons.
I have been reading about neuroplasticity lately and I’m sure keeping my mind active that way has helped combat the cognitive deficits I’m supposed to have because of all the treatment I’ve had – which included whole head radiation. Lol.
Lastly, what are a few tips you wish you had known when you were first diagnosed? Are there any tips you can share for survivors with young children?
I mentioned earlier on that I was initially diagnosed with stress induced anxiety – which is not entirely untrue since the mysterious symptoms of cancer can cause a lot of stress. It was impossible to know back then what a difference an excellent specialist makes. When you’ve never been critically ill, you just assume every doctor had to go through some vigorous training to be a specialist so they would all be decent especially if a hospital employed them.
It’s been about four years since my initial diagnosis and in that time social networking has exploded exponentially so it is easier to find other people who have been through the same thing. However, it’s a double edged sword because sometimes it’s not helpful to compare yourself to others especially if you are the one who keeps on relapsing. I know it has been a long process to get me to this place of acceptance. It is hard to feel grateful for still being alive when you are not really sure how much longer you will be alive for, but I guess it’s true for all of us. I’ve always had a very rational approach to treatment so I wouldn’t try any alternative therapies.
As for survivors with young children, I guess it depends how young they are. My child was three when I was first diagnosed, and he recently turned seven. I was just the sick mummy in bed for a long time and felt really guilty about not being able to be there for him. These days I try not to ruminate so much. There really isn’t any point. It is what it is. I would say look after yourself because if you are feeling happy, your child will reflect this.
A friend of mine who is a research student in psychology gave me some handy hints. I definitely felt a big turnaround when I applied them.
1. Be self-compassionate: Don’t be so hard on yourself. Just remind yourself of how awesome you are just to have said yes to treatment. This also includes self-care. Doing things that feel good. For me it’s the routine of washing my face in the morning with my overpriced essential oils cleanser. It’s just really little things that you don’t think would make such a big difference, but it does.
2. Be mindful: Just notice how you react in certain situations and instead of just getting lost in the emotion. Label it.
3. Find others in a similar boat: I left the support group I met you on, but I do check in on others who have been through something similar. Knowing that they go through similar ups and downs makes me feel less alone.
2. Be mindful: Just notice how you react in certain situations and instead of just getting lost in the emotion. Label it.
3. Find others in a similar boat: I left the support group I met you on, but I do check in on others who have been through something similar. Knowing that they go through similar ups and downs makes me feel less alone.
Thanks, Emily! If you’d like to donate stem cells you can find more information at Be the Match.
No comments:
Post a Comment