To Wig or Not to Wig? Or why I went bald

 Posted by on May 14, 2013 at 11:01 am
May 142013
 

That really is the biggest question most cancer patients have. After “am I going to die?” of course. It’s also the most personal decision I had to make. I’m not a doctor so I couldn’t personalize my chemotherapy regime to suit me. I knew I was going to lose my hair and there was no getting around that. So much of cancer treatment is about losing control but this? This was one thing that I had control over.

I did purchase a wig. In fact, my insurance did cover high quality human hair wigs. I never got around to buying a real one. Mine was a $20 synthetic Beatle-esque bob. I thought that maybe I could deal with life if I felt a bit more normal. I had shaved my head the week before when huge snarls of hair were trapped in my pillow case. I still had my eye brows, they had thinned out but still looked normal.

So I bought the wig. Looking at the few photos I have of me in that thing, it looked terrible. And it felt even worse. It was hot and uncomfortable and itchy. I couldn’t get it to line up nicely on my head.
Vanessa_wig
But you know what? For the one day that I wore it, I felt normal. The next day, I realized that I was normal. I just had cancer. And if anyone wanted to say something about being bald, they had that right. I also had the right to ignore them.

On the other hand, a friend’s mother also lost her hair to chemo. She wore her wig every day of treatment because it made her feel empowered. Other people only wear a headscarf. I sometimes wore a scarf around the house, but mostly I stuck to either going au natural or wearing a hat if I was very cold.

There really is no right or wrong answer. Perhaps you will chose to wear a wig when going out or deciding, “Fuck it. Bald is beautiful.” And if you don’t feel that way, that’s okay too. You reserve the right to tell off anyone who says anything different.

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Love Your Body? With Cancer?

 Posted by on May 7, 2013 at 11:51 am
May 072013
 

I’m taking part in Anne the Adventurer’s Love Yourself Link Up.

Logo3One of the bigger issues facing cancer patients and survivors is body image and sex appeal. It effects survivors of all ages, races, and genders and gets little to no attention from the medical community. It’s also something that very few survivors also talk about amongst each other.

Well, I’m talking about it today!

During chemotherapy and radiation, your body changes and it changes quickly and permanently, sometimes. The photo on the right was taken two weeks after the photo on the left. In two short weeks, all the hair on my head and pubic hair (I wasn’t prepared for that part!) fell out. In four weeks, my eyelashes were gone. After four months of chemo, my eyebrows finally left.

before_chemo_started

...to this in two weeks.

 

Your hair falls out which can be permanent. Some people have lost a limb or have under gone a biopsy which has left a scar. You’ve got either a port installed or a PICC line sticking out of your chest/arm like some new weird invention put out by Google. The removal of your port or PICC also leaves a scar. I have a scar between my breasts from the pericardial catheter was inserted and one on my arm from my PICC line. FU_cancer_scar

And if you’re prescribed steroids, like I was, your face is now swollen and you look like a chipmunk.

And while all of that is going on, you feel cranky, nauseous, and overwhelmed. Your body is no longer responding or looking like it had in ways that are familiar to you. You look bad and feel even worse.

As a cancer community, we’re not talking about the emotional and psychological impact these changes are having.

Why?

We, as patients and survivors, are too overwhelmed with what can be done and just getting through the day. Our doctors aren’t bringing it up because there isn’t enough research to nor is it really on their radar. They’re trying to get us through our days as well. And our family and friends? I think they have no idea where to even begin if they’re to talk about it.

My hair fell out in big fistfuls. I was leaving odd dark brown tumbleweeds everywhere. I finally decided to take matters into my own hands and had the SGT shave my head. When my husband was done, I looked in the mirror and burst into tears. In high school, I had a lime green mohawk. I did that on my own and I proudly rocked it. This? Was suddenly very different. There was nothing punk rock and anti-establishment about having my head shaved. I never wanted to look like this

Seeing me break down in sobs over my hair was difficult for him. I avoided looking into mirrors or talking about how I felt. I thought I looked horrible and wigs made me look worse. I felt like my body had betrayed me and I had no real idea why.  One my hair started coming in, I again didn’t want to go back to those dark times that I had just escaped.

So what can we do about this?

We, as a community of doctors, survivors and family/friends, can talk about our body image issues. Telling our loved ones that we are feeling low, asking our oncologists to hook us up with cancer support therapists, and for survivors to bring it up with doctors and loved ones.

As a survivor, I’ve found that that there’s a new normal with my body. As more time passes between my last chemo and today, I’ve learned that “normal” has a fluid and evolving definition.

I’ve also learned to define myself differently. My hair, my scars and body (cancer and all) do make up a large part of who I am. So does my knitting, my art and martial arts.

Cancer patient or not, you need to figure out just who are you? What does that mean to you? What makes you special? What do you want from life, from your loved ones and from your body?

.

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What Makes a Great Chemo Hat?

 Posted by on November 6, 2012 at 10:01 pm
Nov 062012
 

My favorite chemo cap and my favorite scarf

I’ve been asked, “Hey Vanessa, I want to knit/crochet my friend a chemo hat. Do you have any tips?” Since I made my own chemo hats, I do have a few purls of wisdom to share.

  1. Use a very smooth yarn. The very fuzzy yarns with halos both irritated my bald scalp and left me sneezing from the hairs tickling my nose. I avoided using acrylic because I don’t have any wool allergies. Acrylic felt very scratchy against my head.
  2. Keep it long enough to cover the ears. A lack of hair meant my ears were always very cold.
  3. My favorite chemo cap happened to have lanolin still in the yarn from the sheep. It gives it a sheepy smell but it inadvertently moisturized my head while I wore it.
  4. A dense knit or crocheted fabric is perfect in the winter. In the summer, the cute hat with the eyelets is much better.

But most of all, make it with love. (aw!) That’s the only thing that matters (double aw!)

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What to Say When Your Friend Has Cancer

 Posted by on August 2, 2012 at 3:21 pm
Aug 022012
 

To help illustrate Tuesday’s blog post and the point I’ll be making today, I’ve written a little story. Sit back and enjoy!

Once upon a time, there lived a beautiful, smart and crafty princess named Yolanda. She lived in a castle with her husband the Prince, her mother the Queen and her sister the Troll. (She was a good troll, but a troll none the less.) On this day, Princess Yolanda was home alone with only the royal pets for company. You see, she had just returned from a two-week stay in the hospital where she found out that she was seriously ill. The queen, the prince and the troll had all gone off to their royal jobs; though what sort of job the troll had, no one was quite sure but I digress.

Princess Yolanda was laying in bed and reading the Book of Faces when there came a knock at the door. Glad to have company, the princess  welcomed Sir Robin, a friend of the family around Yolanda’s age. Her father, who died a year before Yolanda’s illness, was a powerful wizard and Sir Robin and his family would often come to seek his advice. She had not seen Sir Robin since her father’s death so it was a pleasant and unexpected surprise. She briefly recounted all she know about her royal illness but it was plain to her that Sir Robin was too distracted by his own issues.

“Sir Robin,” she said, “what seems to be the matter?”

“Oh, Princess Yolanda. I am heart-sick with grief. I want to break up with my princess but at the same time, I don’t want to. If I dump her, then what will I have to complain about?”

“Oh dear, here we go again,” thought the princess. Sir Robin and his lady were always on again/off again. Her father had told him to make a decision but he always had an excuse. Robin kept blabbing on and on but Princess Yolanda’s mind had wandered until…

“Yolanda, you really have no idea what it’s like to have problems. You might be seriously ill and might not live but that’s not a problem. I have problems,” said Sir Robin.

The moral of my long story is, DON’T SAY THAT. But what do you say so you don’t sound like an idiot?

  • “I’m really sorry you have to go through this.”  This is usually a good bet. It’s acknowledges that cancer and cancer treatments totally blow and that you really feel for your friend. Sorry doesn’t change things but it made me feel better that other folks understood my sorrow.
  • “Can I bring you some food/clean your house/water your plants?” Offering a concrete way to help is much better than, “What can I do?” While it was a sweet thing for people to ask, honestly it always left me feeling kind of blank. During my hospital stays, my sister would clean my apartment (Thank you, Maritza!) and my friend Leticia would often bring the SGT and me some Wendy’s. If you’re not near enough to do something like that, or you just don’t like hospitals, arrange a time to talk on the phone or Skype. Most of the time, I didn’t need anything from people. I just wanted company.
  • “Would you like to join me for coffee/a movie/yarn shopping?” Though I was crazy tired all the time, for my mental health’s sake I needed to get out of the house. Your friend probably will not able to walk very far or stay out very long but they’ll appreciate getting out of the house for even 10 minutes.
  • “Do you want to talk about it?” If they say no, don’t be offended. If they say yes, LISTEN. Your friend knows you don’t have all the answers, but it’s nice to just let it all out. Give them a hug or a pat on the hand and commiserate. This isn’t the time for advice.
  • Keep your friend in the loop. Let him/her know what’s going on with you, but don’t be offended if they space out. It was hard to keep my mind from wandering too much. Let them know what’s going on with your mutual friends too. Just because I had cancer didn’t mean I stopped caring about the world outside of me.

If you have anything to add to either list, feel free to leave a comment. If you’re a friend of a cancer survivor and have a question, ask away!

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Stupid Cancer

 Posted by on July 27, 2012 at 2:51 pm
Jul 272012
 

No, my cancer isn’t back. That’s the good news. The bad(ish?) news is that my immunoglobulins are, as the doctor put it, quite low. Which is why I’ve been catching nearly every cold and flu bug that comes my way. The treatment for this is six IV infusions spaced three to four weeks apart. Apparently, this is fairly normal for people who have had Hyper CVAD.

But I don’t care.

The side effects seem to be minimal (as in they only happen in 5% of patients) and I know this means that I’ll start to feel better. Having a cold is no fun, I get that. But this is another sign that I’m dealing with stupid cancer. This isn’t a treatment plan where I just take two pills and then call him in the morning–this is going into an infusion center, getting hooked up to an IV (ugh!) and just sitting there. It’s basically, what I had to do for part of my chemotherapy.

And so I’m mad. I’m mad that I can’t “really” put this behind me. I’m mad that I’m 27 and living with a chronic disease. I’m mad because it’s another six months of my life that I have to plan around treatment and possible side effects.

Thankfully, today is pay day. Which means I’m going to buy myself a sweater’s worth of yarn and cast on for the Swallowtail shawl. I’ll get through this but it still makes me pout.

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Sex Appeal and the Cancer Patient

 Posted by on July 17, 2012 at 5:03 pm
Jul 172012
 

Q: What did the boy banana say to the girl banana?

A: Hey! You’re a-PEEL-ing!

Wakka wakka! I love terrible jokes. In all seriousness, though, this blog post is in response (even though I totally agree with her!) to the Sexy Knitter’s latest entry: Don’t compare yourself to others. I’ve written a bit about my fitness goals previously and I’m happy to say that, despite my injury, I had a great day at the gym yesterday and I’m feeling very strong and sexy now.

But what about during treatment? How did I feel when I went from looking like this:

I miss that purse.

To this:

At least I still had eyebrows at this point!

The answer is mixed. Most days, I went around with out a wig on (they’re hot, itchy and would squeeze my head) letting my bald hair, ah, waft? in the breeze. I felt very invincible even thought I was still in the “touch and go” phase of treatment. I realized that I had to personally redefine what “sexy” and “sex appeal” meant to me.

So what does it mean to you, Vanessa? Well, it meant valuing my body for what it can do and focusing on the things I do like about physical self. While I have struggled with self esteem (who hasn’t?), I knew that I had some good ‘inner beauty’ qualities but those were usually small comfort when I felt like my nose was funny looking or my hair wasn’t right or I just couldn’t find any clothes that I liked.

During treatment, it dawned on me that a. no one is looking at me and b. if they are, let ‘em look! This might be the last time any one ever sees me. I would walk down the main street in my very crowded and populated town in the middle of the day with no wig on, no eye lashes and no eye brows. And you know what? No one noticed. Not many people said anything! When they did it was to either compliment me on my glasses or to say that I was really fashion forward to shave my head. Strangers thought I was just making a “statement” and not that I was sick.

So if no one was looking, and if they were they liked what they saw, why was I getting hung up about being ugly? That epiphany has to be one of the most freeing moments of my life. Sexy means loving myself and letting myself be me. It also means eating nourishing foods (guest post on this coming up soon!), getting up and moving my butt for a half hour a day to keep osteoporosis away, and generally taking care of my appearance.

So go on, take care of yourself and wear what you want to wear! No one is looking, no one is judging you. Sadly, we’re all too busy judging ourselves.

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How Knitting Saved My Life

 Posted by on April 19, 2012 at 3:06 am
Apr 192012
 
I was asked today what was something that helped me get through my cancer diagnosis and treatment. Several things did help, journaling my feelings, talking to other cancer survivors (you’re a survivor from the moment of diagnosis!) and keeping as active as
possible even if it was just getting out of bed and sitting up in a chair. But the number one thing that both saved my life and my sanity was my knitting.

Stripey Hat

During the three months of chemotherapy I finished five hats, a cowl and a scarf. I started but never finished two sweaters and a pair of socks. Knitting gave me a purpose, a way to mark the passage of time, and most of all an outlet for my pent up anxiety and anger. Knitting went from something that I would do most days to something that I had to do every single waking moment. If I knit fast enough,   I could outpace my cancer’s growth. If I bought enough yarn and had enough projects planned, I could keep death at bay. St Peter couldn’t take me away, I had a sweater to finish first!
Chemo treatment made time slow horribly down. If I had something to work on, my day felt like it went by marginally faster. I would wake up at 5.30 am from a fitful night’s rest and just knit until the sun rose. If I had something to make, I could say that I did more than just lay in a hospital bed hooked up to an IV. My good days were ones where I knitted endlessly. My bad days were marked by stitches rather than inches.
Stabbing my knitting needles through the yarn became my rosary. The rhythmic click became at once soothing and my fight song. I would knit to examine my feelings and to gain distance from them. It was impossible to knit and cry simultaneously so I chose to knit. My world was suddenly much uglier and angry but now I had a way to bring some color and beauty into it. Knitting helped to remind me that I had a modicum of control in the world and that I could grow something pleasurable. Every day that I made a stitch was a day that I brought beauty into my world even if my hands were numb.
The drive to create also became a beacon of hope. It was a reason to keep going through chemo. I had still many more yards to knit. And I still do. There’s still more beauty for me to knit, if cancer didn’t stop that, nothing else will. I am a knitter, I can do anything.

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I did it!

 Posted by on August 9, 2011 at 4:46 pm
Aug 092011
 

I’ve been blogging about my weight gain and my current struggle with anxiety and depression. I’ve been slowly doing the things I’ve needed to do except for one big thing: exercise. I haven’t done any martial arts since September 2009. I have been sedentary for one year. Obviously, this was not by choice but I haven’t really broken a sweat since February.

So yesterday, I finally decided that I was going to just do it. I was reaching for my wallet to pay for a subscription for Interweave Press’ Piecework Magazine when I stopped myself. I had just finished updating this blog and whining about not owning a single pair of jeans that fit to my sister when it really hit me. I was going to go for a run, damnit, and if/when I did that subscription would be my reward. And I stuck to my word and now the newest issue is on its way to me!

Run, Forrest! Run!

I did day 1 of the Couch to 5k program which is a 5 minute warm up walk, 60 seconds of jogging and 90 seconds of walking for 20 minutes and end it with a 5 minute cool down walk. I didn’t really jog too often (I was on a treadmill and the fastest I went was 4.8 miles per hour) because I realized just how much “damage” my endurance and cardio-vascular health has taken this year. I’m chalking it up to a combination of chemo and bedrest as to why it was much harder doing the program this time than when I was just a couch potato. It’s made me realize that while in many ways, I’m not sick any more but in other ways I still am.And if my cancer were to reoccur, I wouldn’t be able to handle any sort of treatment at the fitness level I’m at now. I didn’t really think of things that way, but our good friend Lee pointed that out.

Now, I have a bigger reason to move my butt. After some expenses have been paid for, I’ll be on the serious hunt for a new martial arts studio and I need to be at a better fitness level than where I am now at if I want to have fun in class. Or just not die from exhaustion. ;) Now that I’m getting back into running, I need to knit up some accessories but I have no idea what would be. Any suggestions from the peanut gallery are most welcomed!

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