Chemotherapy and hair loss

When I was first diagnosed with cancer at the end of last year, I didn’t think that hair loss would be much of a problem for me.  I’d make some hats, get a wig and everything would be fine.  I was wrong.  It’s fucking awful.

I should probably start by saying that not all chemotherapy protocols cause hair loss.  Loads of folks are able to go through chemotherapy with their hair fully intact, but based on my experience so far, most people have at least some hair thinning.  This is essentially the result of how chemotherapy drugs attack cells.  Cancer cells multiply and grow quickly, much faster than normal cells which is what makes them so dangerous — they begin to take over healthy, normal tissue in your body.  Chemotherapy drugs, then, are designed to kill the cells in your body with the fastest growth rates.  Of the normal cells in your body, your hair and nail cells are the ones that grow the fastest, thus chemotherapy tends to cause problems with your nails and hair.

As I write this, it’s January 28th.  I had to shave my head today.

I cried the whole time and so did my mother.  I cut my hair short in December and it hasn’t grown much since then.  She cut the excess with scissors and then used clippers to shave the rest.  When I looked at myself in the mirror, I cried harder.  I suppose I should be grateful — the shape of my head isn’t terrible or weird, but it will take me some time to get used to it.

I had originally thought that my hair might just thin significantly, because it didn’t fall out very quickly.  When I wanted to learn about ABVD chemotherapy, I read a lot of blogs and forum posts, thinking that it would be useful to me to read personal experiences.  Most folks said that their hair fell out in clumps.  Mine just fell out in wisps, a few hairs here and there.  I thought my hair was looking quite good until I went to a workshop at the BC Cancer agency last week, which I’ve started writing about for Friday’s blog.  I saw my hair at a few different angles and realized that if my hair was mussed up or disturbed at all, you could see bald patches.

I figured that would be the best time to give in and let my hair go and so I bought clippers and my mum and I took care of it this morning.  I think the toughest part for me will be getting used to having to wear something on my head.  I’m definitely not comfortable enough with how I look to go out without wearing something, but I feel awkward and strange and too warm whenever I wear a hat.  I was planning on making some chemo caps using old t-shirts, but the fabric my t-shirts are made of is a little too stretchy.  I think a trip to the thrift store is in order — we’ll see how that works out.

Tomorrow I will make an appointment for a wig consultation.  I know that it will take some time to get used to a wig, but hopefully it will give me the confidence to go out and be comfortable with myself.  I’ll probably write a bit about the process of choosing the wig and my experience wearing one in a few weeks.  Hopefully by then I’ll be able to look at myself in the mirror without recoiling.

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Media Round-up for 28/01/2018

This might be one of the oddest combinations for reviews I’ve come across in a long time: a collection of Oprah’s columns from her magazine and a hentai game.  Oh well, we all know I like trying a little of everything!

Oprah Winfrey – What I Know for Sure

what_i_know_for_sureWhat I Know for Sure is a collection of Oprah’s columns of the same name, originally published in O magazine.  Each essay is essentially a lesson about something that Oprah has learned for certain over the course of her life and I would say that the tone of the essays is generally inspirational.  What I Know for Sure isn’t the type of book that I would normally reach for, but a YouTuber I follow mentioned that it had been a source of comfort and inspiration to her and, since I am in an excellent position to absorb things that are comforting and inspirational, I thought I would give it a try.

While I did enjoy most of this book, some of the anecdotes made me shake my head at Oprah’s overwhelming privilege.  For example, one of the lessons in the Joy chapter was that one should always look after themselves as carefully as they look after others.  This is a profound idea that can be a struggle for so many of us and the fact that she spends a great deal of time in this book discussing self-care in general is fantastic.  In order to teach readers this particular lesson, however, Oprah employs a story about hiring a famous devotional singer to perform at her birthday party, something she wasn’t willing to do for herself alone and only thought of arranging once she learned that one of her close friends also liked the singer.  Why, Oprah’s friends wondered, couldn’t she have hired the singer for her birthday alone?  Why did she need to do it for someone else rather than doing it for herself?  As I said, the sentiment here is good, but the story is a problem for the wealthy and I found myself rolling my eyes as I read it.

Overall, however, despite a few missteps, several of the chapters of the book were extremely powerful for me, particularly the chapters on Resilience, Gratitude and Connection.  I agree with many of the principles that she discusses, such as the idea that no other person can make you happy if you aren’t happy with yourself, a topic that I spent some time talking about earlier this week.  I also greatly admire Oprah’s commitment to life long learning and completely agree with her when she asks… “when you stop learning, you cease to grow and subconsciously tell the universe you’ve done it all — nothing new for you. So why are you here?”

If you’re into Oprah’s particular brand of radical self love and you like reading inspirational literature, I think that What I Know for Sure is a great book to have in your collection.  I think that this book is best read when you need a short, easy to digest pick-me-up.  If you’re having a bad day, read a column or two and you might find a little extra energy to get on with it.

HuniePop

huniepopIn the video game community, HuniePop is more than a little notorious.  It’s an OEL (original English language) soft hentai game where the player can date and/or sleep with potential anime girl mates by solving match-three puzzles.  I would say that the match-three gameplay is a cross between Bejeweled/Candy Crush and You Must Build a Boat (YMBAB).  The puzzle aspect of the game is well-designed and super fun to play.  At any given time, you can hang out with one of the game’s available female characters (you can play as a male or female protagonist, but all of the dateable characters are female).  You can ask them questions about themselves to earn currency, give them gifts to increase your reputation with them, or you can go out on dates.

The dates are where the match-three puzzles happen.  In order to successfully complete a date, you must match adjacent tiles to earn a set number of points in a set number of moves.  Each colour of tile has a characteristic associated with it and each character has a favourite characteristic, which will yield more points.  If you are able to complete several dates with one character, she will eventually join you at your home and have sex with you which involves a bonus puzzle, some poorly voice-acted moaning and a topless illustration of the character.

All in all, I found HuniePop to be disappointing.  I love romance in video games and the otome visual novel (a romantic choose-your-own-adventure genre aimed at women) is one of my favourite game genres.  Unfortunately, HuniePop lacks the emotional depth that I like to see in romance games and the character interactions consist only of surface-level fan-service.  The characters are poorly developed and the only information you learn about them is similar to what you might find in a profile of a popular boy band member in a teen magazine (height, weight, favourite colour, favourite hobby, etc…).  None of the scenarios I encountered were even remotely romantic or revealed anything deeper about the characters involved.  The game’s only surviving grace is its excellent match-three gameplay.

Me and Self Improvement

Over the past several years, I have been developing an interest in self improvement.  I’ve always been an introspective person and I’ve always been committed to lifelong learning, but recently I have been trying to take a more purposeful approach to achieving my goals and living a happy and full life.  I will own that the results of all this have been mixed.  Some years I do a great job with following through on my goals and other years, life throws a few too many curve balls and I get distracted.  Due to my illness, however, this year I want to make sure that I am doing everything I can to stay grounded, live in the moment, and manage my time well.  I have things that I want to accomplish, and I have a great opportunity to get started on them.

I haven’t always lived my life with this much intention.  In fact, for the first 30 or so years of my life, I mostly played things by ear.  In university, I chose my major solely based on the courses that interested me the most, rather than based on what could assist me in developing a successful career.  I applied for a Masters program in Archival Studies mostly on a lark.  There aren’t words to express the relief that I felt when I fell in love with it.  After finishing graduate school, I continued to learn new things and to challenge myself intellectually; however, I never made an actual plan and I never had a clue as to where I wanted my life to go.

Throughout the years when I was trying to cultivate my career as an archivist, I lacked self awareness and personal insight; as such, I completely destroyed my chances of being successful in that endeavor.  The fumbling ridiculousness of my adult career development is an essay for another day, but it was the difficulties that I encountered in my career that served as the genesis for my self improvement journey.

During a long and depressing stint of unemployment, I began to realize that I was basing all of my self worth and happiness on obtaining a highly specific job in a field that was shrinking.  With the job, I would be happy and fulfilled and without the job I would be miserable.  This attitude destroyed my self confidence (which has never been particularly great) and made me even less attractive to potential employers — I couldn’t hide my desperation.  After a great deal of soul searching, I decided that I was going to have to change my attitude, or I was going to be stuck in this negative feedback loop for a very long time.

And so I started to seek out mentors.  I tried to think of people in my life who might not be 100% satisfied with their jobs, but were constantly striving and working toward happiness in their lives.  I evaluated what those people were doing that I was not doing and eventually the tremendous error I had been making became clear: I was relying on something external to make me happy.

In order to be truly happy, I would need to work to be the source of my own happiness.  From there, I started making a lot of positive life changes.  I started setting goals, even if I wasn’t always great about following through with every intention I set for the year.  I made more conscious plans for ongoing learning and began focusing on skills that I felt would be both fun and useful, such as cooking, baking and knitting.  I sought out tools and mechanisms that I could use to accurately and honestly evaluate my life and my progress.

I won’t lie and say that all this suddenly turned my life around and instantly made everything better.  I still struggle most of the time with depression that can make it difficult for me to take aggressive action on aspects of my life that need improvement.  I am still working through the heavy slog of trying to figure out which path I’d like to start meandering toward career change and growth.  I am still completely selfish and judge others too harshly.  I am a work in progress.

Despite the fact that I’m still not exactly where I would like to be, I feel I do need to give myself credit for making some great changes.  I have indeed come a long way.  I am far more comfortable in my own skin these days and I have let go of at least part of the enormous chip on my shoulder.  I’m more understanding and vulnerable; I’m a better romantic partner.  I’ve always been introspective, but I am now much better at accurately assessing myself without being either way too harsh or way too lenient.  I am more honest and better at taking responsibility for my actions.

Because I have learned so much from my self improvement journey over the past few years, I will be writing from time to time about tools and techniques that I have used to facilitate all of these changes.  I hope that some of you find them useful or, at least, interesting to read about!  Have a great weekend, everyone!

We have a new puppy!

chester_crop.jpgIf you follow me on social media, you may have heard that my mother and I recently purchased a new puppy, a French Bulldog that we have named Chester.  Unfortunately, we won’t be able to bring Chester home for another month or so, but we are terribly excited about this new addition to our family!  Finding a new family dog has been a difficult process, one that we have been slogging through over the past few months.  Our previous dog (a miniature Schnauzer named Daisy) passed away just about two weeks before I became ill and had to be admitted to the hospital.  Since receiving my cancer diagnosis several weeks later, we have been pretty desperate to find a new companion and the process has been tense and emotionally loaded.

At first, I was 100% dedicated to adopting a rescue dog.  I felt like we had a responsibility to give a discarded animal a good home.  Many of the rescue organizations in my area, however, don’t have many dogs available, or they only have large dogs, which my mother and I just can’t manage.  A coworker had recommended one organization that is consistently rescuing and bringing a good volume of smaller dogs into our area.  I did some further research, saw that they were rescuing their dogs primarily from high-kill shelters in California, and I made up my mind that they were the best organization to work with.

And then we went to an adoption event.

The organization we chose has monthly adoption events in our area, usually at a local PetSmart.  They are above-board, they’re doing good work, and they treat and feed the dogs well.  It seems to be run by a team of two, one man and one woman.  At the event, we had a long discussion with the man (I’ll call him Bob) and he was adamantly against our adopting anything other than a senior dog.

Bob took one look at my mother (gray hair, walks with a cane) and decided that she would be completely incapable of looking after a younger dog.  He didn’t make any polite suggestions or ask us about how we might care for a younger dog, he just assumed and insulted.  He was very rude and he hurt my mother’s feelings.  Of course, he doesn’t know that we’re experienced dog owners or that my mother would gladly pay someone to walk the dog if she couldn’t manage, but he made unkind assumptions and acted on them in a way that was unkind and insulting.  This set my other completely against adopting a dog from that organization.

While that guy was a huge jerk, he did make some good points.  My mother is getting older and she does have mobility issues and I don’t plan to stay home forever to help her look after a dog.  After thinking about all that, I realized that we might need to reconsider.  My conscience told me that getting a senior dog would be a great idea, but I just didn’t think that our hearts could manage a lot of illness and veterinary visits  —  not to mention a possible death so soon after the death of our beloved Daisy.

And then my father suggested to my mother that we try to find a French Bulldog puppy.  Our family has a long history with French Bulldogs.  My mother adopted her first one in the early 1970s, when she was single.  Trina lived for several years after I was born and from then on we always had a French Bulldog as our family pet until 2003, when our last one passed away.  We were unable to find another Frenchie at that time and so we decided to adopt Daisy.

While I wasn’t keen on the idea of house training a puppy with everything that we have going on, once I began thinking about French Bulldogs, I began to realize how well they suit our current needs.  They are great companions who tend to bond closely with one or two people, they’re huge couch potatoes who don’t need lots of exercise and, essentially, they’re bred to be calm and relaxed pets.  They aren’t working dogs who need a lot of stimulation to be happy.  I know that, right now, this is the best option for our family.

I’ll be posting a lot more about Chester and his development in the future.  I hope you enjoy all the cute photos!

 

Media Round-up for 21/01/2018

The Blacklist

blacklistThe Blacklist is the first episodic law enforcement procedural that I have enjoyed in years.  I’ve been speeding through seasons 1-3 (I watched them some time ago and wanted a refresher) so that I can enjoy season 4,  If I had to compare the Blacklist to another series, I’d say that it’s quite similar to the J. J. Abrams spy drama, Alias.  I feel like Alias is much maligned these days, but it remains one of my favourite TV series of all time (the first three seasons anyway, after that it really does go downhill).  The Blacklist has a similar structure that I find to be highly entertaining.

The show features two main protagonists: FBI agent Elizabeth Keen (Meghan Boone) and Raymond Reddington (James Spader).  Raymond Reddington is a former high level US Intelligence officer turned notorious criminal (number 1 on the FBI’s Most Wanted list).  One day, he turns himself in to the FBI in Washington, DC with a plan to assist them in capturing a list of criminals (the Blacklist) that are so nefarious, the FBI is unaware of their existence.  Reddington states that the only FBI agent he will work with directly is Elizabeth Keen, a profiler who is, on that same day, just starting a new position with the Bureau.

Shenanigans and James Spader spy badassery ensue.  It’s pretty damned fun.  I’ve always enjoyed the monster-of-the-week plus interesting overarching plot format.  The supporting cast is good and, of course, James Spader is incredible.  A lot of the overarching plots are a bit ridiculous, but I’m a sucker for high drama.  I’d say that the only aspects of the show that grow tiresome over the first two seasons are the roller coaster relationship between Elizabeth Keen and her husband, Tom, and Elizabeth’s ever-changing feelings about Reddington.  The nature of their true relationship isn’t revealed until, as far as I can tell, season 4 and, in my opinion, this is drawing things out a little too much.  Elizabeth waffles between cursing Reddington, reminding us constantly about how evil he is, and then also clearly caring for him a great deal.  This is probably what any normal person would do in her situation, but it starts to grate a bit if you’re binge-watching.

All-in-all, I would recommend this show to pretty well anyone.  I know it’s difficult these days to justify trying out what looks like it could be a fairly standard police procedural (there are so many now and they’re mostly bad), but I think the Blacklist is definitely worth a try.  James Spader’s performance alone, in my opinion, is worth it.

Lisa Morosky – The Bootstrap VA

bootstrap vaAs I said in my Goals for 2018 posts, I am in the midst of evaluating my options for a career change.  Right now, I’m not completely certain as to what my plan will be, but I do know that I am interested in working online so that I can be more flexible and location neutral.  I am also at a point in my life where I feel like the best way for me to obtain real satisfaction in my career will be to start my own business.  One of the options that I have been considering is working as a virtual assistant.

Lisa Morosky’s book covers a lot of the basics that anyone would need to start a virtual assisting business.  I would say, though, that this book is an excellent and straightforward primer to working as a freelancer online in any capacity.  She has provided advice on productivity and project management software, tracking expenses, marketing and getting and keeping clients.  All this is presented in a package that is easy to read and loaded with links to resources for further reading.  I particularly like the fact that Morosky has clearly outlined business elements that a VA will absolutely need to have before starting their business, along with other elements that can be acquired or created as the business is growing and evolving.

I am thrilled that I read the Bootstrap VA at this moment.  It has provided me with so many ideas for how I can slowly start learning some new skills that will help me narrow down my goals.  The neuropathy in my hands has limited my options for what I can do with my free time, but I can certainly watch some webinars on social media marketing and search engine optimization and start working on my website.  It is my hope that, even if I decide eventually not to take the path of starting a VA business, I will be able to use a lot of what I learned from this book to find the right path for me.

Chemotherapy side effects and invisible disability

I don’t feel like writing today. In fact, I’ve been planning my schedule so that I don’t need to write on the weekends at all (as I am writing this, it’s Saturday, January 13th). I’ve been trying my best to write one week ahead of schedule, but everything this week has been a struggle and so here I sit on Saturday completing work that should have been finished several days ago.

I have neuropathy in my hands. This is a common chemotherapy side effect that I, and I think probably most people, knew nothing about prior to being diagnosed with cancer. My fingertips, in particular, are numb and tingly and every time I push a key on my keyboard, it feels like they’re asleep. My hands themselves are also very weak — I have almost no grip strength and have trouble hanging on to most objects for any length of time. If I spend too much time typing or holding any objects, the muscles in my arms start to ache and I’m at risk of dropping what I’m holding.

This has diminished my quality of life considerably. I was hoping to indulge in a lot of my hobbies during my time away from work and that is impossible for me now. I can’t knit, I can’t do any crafts, and I can’t colour. Writing in my journals has also become difficult and I usually have to cut myself short because of the discomfort. I haven’t tried playing a lot of controller-based video games, but I am going to assume that I won’t be able to play them for long sessions as using my 3DS has been okay only in short bursts.

The neuropathy is also limiting where and how I can travel. Earlier this week I decided to go on an outing downtown to shop at a Japanese dollar store that sells Daiso products. I brought a takeaway coffee on the train with me and realized after one stop that I wouldn’t be able to hold on to the coffee for the whole trip downtown. I decided to get off the train and run another errand closer to home first, mostly so that I could throw the coffee away.

On my way home, I had another realization: what happens if I can’t get a seat on the train? If I can’t hang on to my coffee for more than a few minutes, how am I going to keep myself steady hanging onto a post while standing on the train? I had happened to sit in a seat reserved for the elderly and people with disabilities. At every station I nervously glanced around to see if anyone who would need my seat had entered the car. I didn’t know how I would manage if I had to give up my seat, but I also didn’t think I would be able to explain why I needed a seat so desperately. Right now, I look fine. My hair has been thinning a little bit, but not so much that anyone would notice and I have no other visual side effects. Everything that is wrong with me is completely invisible.

I won’t be taking public transit for now. In some respects this is probably for the best. During chemotherapy you are extremely vulnerable to infections and getting sick can delay your treatment significantly. We all know that public transit is a great place to catch a cold or the flu, so it’s probably a good idea to avoid it, but it’s shitty to feel like my treatment is limiting my life to this extent. My boyfriend and I had planned to go out for a fancy dinner downtown at a restaurant, where an old friend of mine is the executive chef, to celebrate my birthday when he’s next in town. Those plans are on hold indefinitely.

Unfortunately, I’m not sure if there’s anything that can be done about the neuropathy. I will be talking with my oncologist before my next treatment about lowering my dosage of the drug in my protocol that causes neuropathy (vinblastine), but I’m not sure how this may affect my treatment over the long term. I know that the neuropathy will likely go away within a few months of my completing treatment, but I am concerned that it may continue long after the fact, particularly since it seems to be quite severe for me.

I could say more, but to be honest, it’s painful for me to keep typing. Please keep in mind that my capacity to chat online and respond to comments is diminished at the moment. I’m trying to keep up with things as best I can and I appreciate your patience!

Time for a spending freeze!

3712392Despite the fact that my parents and I intended to not buy tons of presents for Christmas this year, I wound up overspending on gifts, both for my parents and for myself.  Right now, due to my current financial circumstances, I feel like the best way to get back on track is to go on a spending freeze, which I will be starting this week.  I have attempted this challenge twice previously and I have found it to a great tool for boosting savings or debt repayment.

As I said in Part 1 of my Goals for 2018 series, I learned a lot about personal finance in 2017 — something that I had avoided dealing with for the majority of my adult life.  I’ve always been terrible about money and I felt like I was so stuck in my irresponsible ways that I was beyond help.  I began to realize, however, that in order to move forward with my life and give myself options for the future, I needed to make a significant change.  There’s nothing that can make you feel more stuck than having a large amount of personal debt and no savings.

I did a lot of research —  mostly through YouTube.  I wanted to know how normal folks were managing to make smart financial decisions to pay down debt and save money and I needed to start with the basics.  It turns out that there’s a substantial frugal living community on YouTube from which I was able to glean a lot of simple tips and basic best practices.  It was in a YouTube video that I first heard about the concept of a spending freeze.  The more I learned about this technique, the more I felt that it might be useful for my situation.

At the time, I had also been watching a lot of videos about minimalism and de-cluttering.  These videos stressed using what you have instead of buying more things that you don’t need and might never use.  The minimalists got me thinking about the things that I owned that I hadn’t yet used and I started to take a rough inventory.  It turns out that I own loads of manga I haven’t read (though in most cases I have read the scans and just not the hard copy English releases), games I haven’t played, books I haven’t read, and I have a stash of arts and crafts materials that I haven’t yet used, such as yarn, needle felting kits, and colouring books.  What, then, other than food, basic bills, toiletries, and a few aesthetic treatments I have regularly, did I need to spend any money on?

Absolutely nothing.

And so I decided, toward the end of February, that I would have two spending freezes in 2017: one in March and one in September.  I chose those months in particular because they were my extra paycheque months for 2017, thus I could maximize the amount of money that I would pay toward my debt.  I set the following rules for myself:

  1. I will purchase no video games, books, manga, crafting supplies, home decor, clothing, stationery or any other consumer goods.
  2. If I run out of any toiletries, such as facial cleanser or hand soap, I can re-purchase the same item or replace it with something in a similar price range.
  3. I have a small allowance set aside for eating out and I cannot exceed that amount (if my mother wants to buy dinner once in awhile, this does not count against my allowance).
  4. I may have one or two pre-planned video game purchases.  I can purchase these when they are released; however, it may be better to wait until a price drop if I am not going to start playing them immediately.

My attempt in March was a disaster.  I fell off the wagon almost immediately and consistently over-spent my takeout allowance.  I was poorly prepared (both financially and mentally), but I did manage to reduce my spending significantly and pay a solid amount toward my debt.  My September attempt was a huge success and I came very close to paying off my credit card balance ($8000 at the beginning of 2017) entirely, a feat I would proudly achieve in October.

Right now, my net income has been substantially reduced.  I am earning about 35% less than usual; however, I have been spending like I am earning my full income (or even a little more than that).  This is mostly emotional spending.  Some of my purchases have been necessary as they are mechanisms that I believe will assist me in achieving my goals for the 2018, but many of my purchases have been “Hi, I have Cancer, so I will now treat myself” in nature.  I don’t feel any guilt about making those purchases, because I am happy with them and I feel like we all need to be a little frivolous at times, but now it’s time to reign myself in.

Throughout the rest of January and all of February I will be following the rules that I have set for myself above.  This will allow me, hopefully, to pay off my holiday spending quickly and set me on track for another financially responsible year in 2018!  I’ll be posting some periodic updates on my progress, so please check them out!